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File: 1507325470867.png (404.78 KB, 1365x431, ABIM-Exam-Review-Alzheimers-Co…)

No. 399180

Previous Thread: >>>/snow/387658


Discuss people who feign or exaggerate chronic illnesses and medical crises for attention and asspats online. Previous topic focused primarily on Instagram accounts, but posts from blogs and other social media sites are admissible.


Most Recent IG Cows:
kelly.ronahan / me_and_the_mr (has her own thread >>>/snow/359452)
hypermobileguy
chronically_jacquie (has her own thread >>>/snow/391202)
outrageously_helpful_orion (Jaq's friend)
MyBlondeVoyage
onemorestep2
endlessvoices
chronically.ams
chronically_carmel
shelbiepaulley / beepaulley
gorgeous_gatorade_princess

Most Recent Tumblr Cows:
bendywarrior (Tumblr)

The Munchie Queen of all time is Robyn Brown, who has her own threads (original: >>>/snow/197138). Sadly she is now incognito.


What Is A "Spoonie"?
People who identify as 'Spoonies' are referencing 'The Spoon Theory,' written by a woman with lupus to explain the chronic illness experience to a healthy friend who asked her what it really feels like to live with her medical problems.
https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

The 'Spoonie' Community is, in general, a legitimate supportive network for people dealing with chronic illness. In recent years, however, it has become polluted with SJW types and has attracted a new breed of attention-seeking catfish: people who lie about, fake having, and/or exaggerate existing medical problems and crises for no benefit other than to garner attention.


What Is Munchausen By Internet (MBI)?
From Dr. Marc Feldman, an expert in factitious disorders including Munchausen Syndrome, first described Munchausen By Internet in 2000:
>>…the advent of online support groups, combined with access to vast stores of medical information, enabled individuals seeking to gain sympathy by relating a series of harrowing medical or psychological problems that defy comprehension to misuse the groups.[1] Communication forums specializing in medical or psychological recovery were established to give lay users support in navigating often confusing and frustrating medical processes and bureaucracy. Communities often formed on those forums, with the goal of sharing information to help other members. Medical websites also became common, giving lay users access to literature in a way that was accessible to those without specific medical training. As Internet communication grew in popularity, users began to forgo the doctors and hospitals often consulted for medical advice. Frequenting virtual communities that have experience with a medical problem, Feldman notes, is easier than going through the physical pain or illness that would be necessary before visiting a doctor to get the attention sought. By pretending to be gravely ill, Internet users can gain sympathy from a group whose sole reason for existence is support. Health care professionals, with their limited time, greater medical knowledge, and tendency to be more skeptical in their diagnoses, may be less likely to provide that support.


Links to Articles and Info on MBI:
https://www.munchausen.com (Dr. Feldman's website)
https://www.thestranger.com/seattle/the-lying-disease/Content?oid=15337239
https://www.abc.net.au/news/health/munchausen-by-internet-what-drives-people-to-fake-an-illness/7631990
https://www.theguardian.com/society/2015/apr/29/jules-gibson-munchausen-by-internet-sickness-bloggers-fake-it-whole-pantry
https://en.wikipedia.org/wiki/Munchausen_by_Internet#Characteristics

No. 399214

Chloe'sChroniclesOfBeingAHistrionicAsshole really needs to be on the main list.

No. 399217

>>399214
We keep forgetting her. Oops, guess she’s not memorable.

No. 399305

File: 1507339345821.jpeg (95.86 KB, 750x370, 3D3A748D-52F0-4269-B1AF-E556E0…)

How much you want to bet that Allyson will attempt again and go through the whole “woe is me”, attempt, psych hospital for a few days, release process again in the next week days? Ffs, you’d think her psychiatrist would do more to keep her safe (she said her psych didn’t do ANYTHING today) if she was this bad… why do these hospitals keep releasing her if she’s a constant threat to herself?!

No. 399317

karolynprg (the girl who created hospital glam) is so cringey

No. 399319

Also discussed in the last thread:

servicedogpaws
ehlersdanlosgirls
aubreys.lyme.journey
twistedchronicwarrior
littlemisswheeler

No. 399323

Can we start discussing Chloe Print Lambert now? I don't want to be an asshole, I know she lost her baby and I'm not saying we should talk about that. But at some point her munchie behavior has to be up for scrutiny again.

No. 399332

>>399323
Discuss away. I’d avoid the baby subject but munchie antics are fine.

No. 399376

File: 1507355189057.png (602.07 KB, 899x599, cpl1.png)

>>The NHS is under ever such a strain so we al need to stop going to hospital unnecessarily. Except for me, because I'm the sickest little princess.

What's actually wrong with this one? Powerchair and oxygen, but no copious hashtags to work it out from.

No. 399377

File: 1507355435224.png (806.04 KB, 914x585, cpl2.png)

>>399376

answering my own question: the usual array of easily-exaggerated conditions, and whatever Fowlers Syndrome is. Also lines hanging out the top of the shirt, because what's the point in having them otherwise?

No. 399382

>>399377
Disposable exam gloves? And another eds “warrior “ smiling while sitting on the ground in a bad position.

No. 399383

>>399382

cos an overpriced heat wrap saves you from excruciating back pain…. mmmhm

No. 399386

>>399377
Oh my God the munchies are truly starting to flock towards CRPS now.. why. Please stick to easily faked invisible shit, please. If they’re not posting pictures of their horrifyingly swollen or atrophied discolored deformed limbs, they definitely don’t have a legit CRPS diagnosis. Why the hell do I keep seeing them now going after CRPS? Jesus Christ.

No. 399402

>>399377

Fowlers is a new fashionable dx for people who can't pee. Because it MUST be a syndrome and not, you know, the fuckload of opioids and anticholinergics they're on.

CPL has a long history of mental illness and eventually decided physical illness gets more asspats.

No. 399403

>>399376
Five ambulances??? How the fuck can she afford this life style?

No. 399407

File: 1507369499989.jpg (721.67 KB, 1250x396, everydaythesame.jpg)

Austrian cow:
- back pain for 2 weeks and painkillers don't help
- she couldn't go to the grocery store, because of her bloodpressure problems(she lives with her parents)
- she keeps mentioning her birth mark and I guess now it's the 5th time she mentioned it in half a year. I don't think she went to any dermatologist the first 4 times
- has a headache for 15 month, they diagnosed a sinusitis and she goes to a neurologist for help. He prescribed a triptan, but it didn't help
- a week ago she mentioned a neuroma(CRPS) at her wrist. Now a doctor wants to measure the function of her nerve(?). She also wants a MR-neurography. She doesn't tag the CRPS
- she couldn't pee for hours and she kept crying. She peed 420 ml.
- she wants a full body cat-scan because of it
- appointment at the neurologist, GP, dermatologist, ophthalmologist, rheumatologist, clinic for endo, doctor for colitis and crohns and the dentist

How can you measure 420 ml? It's such an exact amount. Besides that when you are in a lot of pain you probably won't grab a container to pee in.
I'm still thinking she's trying to get another headache diagnosis. She mentioned migraines month ago, but the migraines disappeared.
And her list with all the appointments makes me speechless.

Sorry for the text wall.

No. 399415

File: 1507372487700.png (156.39 KB, 750x1079, IMG_6660.PNG)

Apparently Dani has decided to abandon the GP diagnosis in favor of loudly yelling "my severe anorexia! The thoughts are so loud!". When asked if the ensures were for her GP she replies that they are to make up for what she hasn't eaten as she is "having a rough time with her weight".
When she was in search of the GP diagnosis she claimed the anorexia wasn't a factor and she was in recovery for two years. Now that it seems like tests aren't supporting her severe GP diagnosis she has decided to abandon it and try the ana one again. The sudden abandoning of one diagnosis for a full blown version of another doesn't seem believable.

No. 399416

>>399305
Bendy's "psychosis" is a hoot. It's the typical malingering presentation (although in her case it's Munchausen's).

I went through her schizophrenia tag the other day and she reports having random onsets of delusions, hearing only isolated commands (which seem to intensify for no apparent reason), hearing voices that compose complex sentences like "cut [your] throat and die so that the demons don't have a host", seeing "shadow people" (classic amphetamine psychosis; she does take adderall), "delusions" that come and go for a few hrs at a time, and positive symptoms (i.e., hallucinations, delusions) that she claims don't respond at all to heroic doses of old school and atypical antipsychotics.

I think she really does have a schizoaffective-BP diagnosis (along with a handful of others I’m sure), but only because she likes to pick up as many MI diagnoses she can during her weekly trip to the psych unit, and all that's required is for her to make some kind of scene and cry about the voices and the PTSD triggers and the obsessive intrusive thoughts and so on and so forth.

Anything to feel special and to make her miserable ass boyfriend worried, I guess.

No. 399419

>>399402
She tries to hide this side of things now, but she started out with an eating disorder and PD. She's an absolutely classic case of someone transitioning into getting her "supply" from munchie behaviours instead, it's painfully blatant. Most of her issues are fabricated or self induced, though there may be a tiny amount of real stuff like benign hypermobility that got her the EDS diagnosis (if she actually has it). Her powerchair was purchased by her parents, kek.

She is one of the most "successful" UK munchies in terms of what she drains from the NHS, from donation services, and all that. Very like chloes chronicles, but way better at hiding her mental illness. CC needs only a bit of poking to show that she's a raving loon, CPL is deceptively convincing unless you've followed her for a long time and picked up on her manipulations, or are getting good at spotting these types. She's munchie af, I think a lot more intelligent than Chloes Chonicles which is why she seems more convincing and doesn't invent such obviously stupid stories ("vaccines changed my DNA!!!").

There must be something in the water in the UK.

No. 399433

>>399403
UK cow, the taxpayer paid.

No. 399453

>>399416
Not only that, but her psychosis only happens when it’s convenient for her.

She likes to pick up illnesses that her followers / who she’s following have. A few years back, she was following someone who had EDS so she had to have hEDS (even though joint hypermobility is a key indicator of Lupus and other autoimmune issues); then one of her followers had cEDS; then one of her followers had schizoaffective (she’s been diagnosed with schizophrenia for YEARS and then all of a sudden it was changed – which I know definitely happens, it was just odd); then someone had vEDS (she had to be the most speshul “sever” type despite not having any major events or typical features); then it appeared copied a well-known blogger with CVID (that person was in the process of getting it diagnosed and all of a sudden Allyson had it diagnosed without any prior mention of it → when she was questioned about it, she claimed her doctors had been working on the diagnosis for a long time)

No. 399454

File: 1507381856536.png (195.47 KB, 750x1279, IMG_2416.PNG)

Today in 'absolutely fucking overkill that's not even how it works what the fuck': NG tube with a Farrell drain bag, all exposed. That does not even work, never mind how gross it is. No GI would prescribe it in that configuration. The bag needs to be below the stoma for it to work, you fucking munchies idiots!!!

No. 399465

>>399454
Doctors sometimes do prescribe ng for drainage usually after a peg has failed to drain or for blockage but they don’t work well with bags like that..

No. 399488

>>399465

I have never seen an NG for drainage without an active suction, and a vacuum bag like a Farrell is not going to do much for that. If and when we need to put in a relief suction tube, we connect it to a suction line. Even then it's hit and miss, and almost always we use large gauge NGs, not the feeding gauge atraumatic NG she seems to have in her nose.

She's a total Munchie, having at one point claimed to have NMO and MS, now she's down to NMO but shows no myelitis or ON. Instead, she claims to have 'leaky gut' and GP, and the presence of leaky gut makes the whole thing suspect. I mean, she has a photo of herself in a hot tub with a drink, complaining about her gastric bleed. Dude, not only is hot water a big no-no with demyelinating disorders like NMO, you also don't just chill around when you have a gastric bleed. She's making shit up to the extreme. Not to be mean, but perhaps she'd benefit from having NMO for a day. Also, she's spreading panic bullshit about it, such as it having a low survival rate - I hate people who do that, their nonsense hurts patients who have been recently diagnosed and try to navigate their new real.

No. 399494

File: 1507389056048.png (1.02 MB, 1536x2048, image.png)

>>399376
Found this in the comments of one of her ig pics if it helps

No. 399501

>>399494

Ok so… I knew, or I thought I knew, CPL. we were in the same support group. Back then, she was trying to get a mito diagnosis, having wasted a lot of money on getting tested for every single possible mitochondrial aetiology and to no avail. Initially, I really did feel for her - she had the worst life ever: lots of mental baggage, depression etc. despite fairly affluent middle class English upbringing, and now all those health woes. But then, the whole thing became weird. I suffered from intestinal failure and started TPN around this time. She asked me why, so I explained what the relevant factors were in my case. Boom, a few weeks later, she claims to have the same issues and went on TPN. Reportedly, this has happened to so many people that most of us in that support group gently told everyone to just not tell her shit about our diagnoses because she'll start claiming that.

Other than deconditioning and some normal hypermobility plus a lot of mental health issues, she has nothing wrong with her. She's a massive emotional drain to anyone who keeps in touch with her, always having crises and plays the mental health card to her docs and to her friends alike: if she doesn't get her way, she eventually threatens suicide or self-harm, and suddenly she gets whatever she wants. That's how she controls her parents, who are well-meaning but not the brightest, and her boyfriend. CPL has been doing this for the best part of a decade now, and she does not expect to get better. She has no plans for her life except being sick, and hey, considering the shitload of stuff and donations she gets from various people, it's working out quite well for her!

Ps. her orthopaedic consultant advised her that using a wheelchair will just weaken and decondition her, so she cried and threatened suicide until her parents got her the wheelchair from the set of a fucking movie (forgot which one, sorry). She's bizarre.

No. 399539

>>399501
The wheelchair was from the set of me before you kek

No. 399545

>>399539

Jesus. Christ.

No. 399547

>>399377

IBS is a chronic illness?

No. 399561

>>399453
Schizoaffective is more attractive I guess because it's basically two serious MIs rolled into one dx, and it's not super well known so the snowflake value is high. Although she doesn't even get it right, since in a recent post she explains that she experiences psychosis "when she's depressed", making it mood-congruent. Plus, her "depressive episode(s)" always seem to be a few hours long, i.e. when she's not receiving enough attention from the internet or her boyfriend.

No. 399566

File: 1507398009553.png (65.66 KB, 1370x448, Screen Shot 2017-10-07 at 1.27…)

>>399305
I'm also a big fan of her autism routine.

No. 399575

>>399566

Wtf. Which idiot is that? Surely if she can type this, she will be able to let them know by text.

Ah, caricatures of illness, so fun.

No. 399635

File: 1507405377608.jpg (215.55 KB, 1080x1378, IMG_20171007_213654.jpg)

Because finishing with two dislocated kneecaps makes complete sense…..

No. 399641

>>399635

I have no idea how she can have EDS and compete. She also says she has gastroparesis and MCAS.

No. 399647

>>399641
You wouldn’t be able to be a gymnast with EDS, and having two dislocated kneecaps would make walking impossible, let alone a gymnastics routine. And no doctor who treats EDS would let their patient participate. I call complete bullshit.

No. 399652

>>399635
Is this the same girl that shaves her head because of mast cell activation syndrome (totally not a treatment for that)? She is super annoying and maybe has mast cell but nothing else

No. 399677

File: 1507407351998.png (1.91 MB, 1536x2048, F4CB21D1-537E-4061-807A-68558F…)

Sooper serious anorexia

No. 399684

>>399575
Bendycripple, sorry I forgot to add that.

No. 399743

>>399647

Sporting bodies in the UK are under a duty of care towards competitors, and to stay insured. One of the conditions to stay insured is to require all competitors to have a medical clearance letter - I've issued my fair share of these. Practice guides are quite clear about what is and isn't permissible. I am not an orthopod, but I cannot possibly imagine any ortho to sign off on someone with anything beyond trivial and well managed EDS to participate in gymnastics of all things. This leaves two scenarios.

1) She's not actively competing.
2) More likely, she has not been diagnosed with EDS, or if she has, it is minimal, and she's exaggerating it. Even then, because the EIA risk, MCAS/D should rule out participation alone

I find her shaving her head very, very suspicious. A lot of Munchies somehow try to visually allude to the bald sick cancer kid trope (hi, Jonzie!). I think at some point she realized she's never going to be a top grade gymnast, so she made herself special by adopting the 'look at how awesome I am despite my limitations!' trope.

No. 399750

>>399647

I don't know what she means by dislocating her kneecaps but it is manifestly impossible to walk on dislocated knees. Even people with frequent dislocations can't even hobble on it, and we often give them gas and air just to make sure they don't pass out from the pain. Also, it's not uncommon for people to confuse a dislocation with various ligament tears around the knee, so I doubt she would know whether she dislocated her knee or merely tore a ligament without some pretty damn urgent imaging. Of course, the favorite word of every EDS Munchie is 'subluxation', which is this idea of a subclinical dislocation that self-reduces. Needless to say, that's bullcrap. The assertion that she 1) dislocated both of her knees, 2) went on to compete, 3) was not immediately pulled off and sent to A&E is patently ridiculous. Just how stupid does she think people are?

No. 399754

>>399750
Why do you feel like this is the fave word of munchies? Subluxations happen A LOT in the true EDS population, obs they would happen with munchies. But the way you phrased it makes it sound like EDSers don’t experience this – subluxations in EDS are much more frequent than complete dislocations. Am I missing what you meant?

No. 399763

>>399376

What exactly is 'this' she's referring to? There are few things that someone in her state needs urgent A&E case management for, but then can be discharged with. Readmissions are generally a sign that things aren't doing well and the patient should not have been discharged. If she had the same issue five times in a few weeks, each requiring emergency admission, we would normally have considered either holding her until she's stabilized for a while, or figuring out a way to manage her condition at home (e.g. by giving her a supply of
PRN meds she can IV push). There are very few things I can think of that on one hand can be suffered repeatedly over weeks but at the same time necessitate a visit to A&E. In general, even very medically frail people can be provided with pain plans, nausea plans, other palliative care plans to reduce their reliance on A&E, so I am a little dubious as to just how positive staff would be about Princess Chloe rocking up at A&E for the fifth time in a few weeks. Sure, looking at her - very evidently mentally unwell young girl with long health history, exaggerated infantile attitude and a recent traumatic experience -, staff might have elected not to go spare on her bleeding the NHS dry by treating the A&E as light evening entertainment whenever she's bored and her boyfriend can't meet the need for attention that's such an integral part of her personality disorder, but that's far from the spin she's putting on it, whereby they were so positive and understanding. Here's a secret, Chloe: we're too busy in the A&E to deal with your shit and discuss whether you should or shouldn't spend every evening there. Normally, we make notes in your clinical chart for your GP or your consultant to figure out how to reduce your dependence on the A&E, usually phrased as 'referral to establish an ongoing plan of care for such instances' or some other string of NHSese. So yeah, I wouldn't take A&E docs and nurses not telling you to knock it the fuck off as a confirmation that you should indeed keep entertaining them every other night.

No. 399766

>>399754

Yes, but it's probably not your fault. The point is, while a dislocation is usually pretty damn obvious (as by definition, most dislocations don't reduce themselves, and reduction might require medical assistance, and is painful anyways), subluxations are by definition not quite obvious. As a physician, I know I couldn't tell whether I have subluxed my shoulder or just pulled it a little too hard without some imaging, and safe to say that a lot of the time, what EDSers - especially of the Munchie/histrionic sort - claim are subluxations may be just about anything: sprains, strains, pulled muscles, whatever. But because subluxations have become a frequent term in EDS circles, a lot of people with EDS may - innocently or not - think every time their joints suddenly dislike a force applied on them, but do so without the clear signs of a deformity etc. that happens with dislocations, the joint is subluxed.

TL, DR: subluxations are only one kind of joint damage and the popularity of the concept in EDS groups might cause patients to misidentify anything short of a traumatic dislocation as a subluxation, usually inaccurately.

No. 399778

>>399766
Once you actually have them in EDS and they are confirmed, they’re pretty easy to distinguish. At least for me? Idk… subluxations look and feel way different than other soft tissue injuries to me.

But I definitely see where you’re coming from much better now, thanks :)

Saged for noncon

No. 399779

File: 1507411879228.jpeg (89 KB, 750x425, B9E8B822-7B82-4C27-992F-BF7524…)

Oh look, allyson is drunk (again). I’m sure that’s great paired with her MIs, CIs, and medications…

No. 399865

File: 1507419675252.png (844.17 KB, 640x1136, IMG_3036.PNG)

>>399214
Saw this on her FB page! She got called out on here for the BS about home oxygen and her use of the mask. In this picture she's switched to nasal cannula…the piece hanging down over her mouth is kore commonly assosciated with measuring CO2 (during a sleep study or when very unwell in hospital)

She's never actually shown her home oxygen equipment….I call more BS!

No. 399869

>>399539

WTF. In the UK, there may be a waiting list for wheelchairs, but you can get a rental in the meantime. The fact that wheelchair services did not supply her with one is a big flashin' red flag right there. Even if it takes some time (my husband suffered a devastating attack of transverse myelitis recently and became an incomplete C3 quad, so I'm quite familiar with the length it may take to get a highly custom wheelchair that can hold all the equipment he needs), you can get a temporary rental - the hospital helped us arrange for one, and while it was old and took ages to charge, it wasn't too bad. For someone who can, if need be, self-propel and/or have her boyfriend push her around, Chloe was in no desperate need for a wheelchair ASAP, as e.g. someone who suffered an SCI and couldn't go home from the hospital/rehab until they have a suitable wheelchair would have. So the rush acquisition of a wheelchair (one designed for a male quadriplegic, no less, which means it's designed for someone with a different body shape, characteristics, needs etc.) sounds fishy. Let's face it - they had the money laying around, Chloe cried and probably threatened suicide/self-harm until she got what she wanted, which is a wheelchair that is completely overkill for her needs. My hunch is that she tried to apply for one through her docs, who told her she did not need one, or if she did, she would benefit most from a manual wheelchair. Which she couldn't possibly abide - I mean, she's the sickest little spoonie ever, right? Can't have her look like anything other than super severely ill.

These people make me legit sick.

No. 399872

>>399865

LOL that's a nasal cannula with a capnography probe. Absolutely never used in home healthcare, it's mainly an ICU and PSG thing. Just how full of shit can she get at this point? It looks to me like she swiped that from her last hospital admission… which is its own kind of pathetic.

No. 399876

>>399872
They use those co2 measurers here for anything where you’re sedated (even if you’re not under anesthesia). So she could have even grabbed it from any test or procedure she whined enough to get

No. 399879

>>399872
How sad that she’s taking medical supplies to munchie better kek. If you’re going to steal medical waste from the hospital, at least choose something useful, like tape or tissues.

No. 399880

>>399876
She's actually hilarious in how terrible her faking and acting is. Except for the whole bleeding the NHS dry part, that is.

There has to be something in the water in the UK that we have these supermunchies like Chloe's Chronicles and Chloe Print Lambert. You'd think the NHS would restrain them, plenty of people do struggle or wait to get care they do need. If only they could their manipulation skills to some good use.

No. 399885

File: 1507421572307.jpg (680.75 KB, 775x1675, Screenshot_20171007-190917.jpg)

Kek. She goes down the munchie rabbit hole more by the day.

No. 399886

>>399880

Genuinely sick people will always receive worse care than these supermunchies, even if they need it much more: if you're actually sick, you don't have the time and energy to navigate the system and try to get the most out of it - you're too busy being sick. Plus, most sick people don't get the same sort of sick satisfaction out of gaming the system that the Chloes and the other Munchies get. To them, it's almost like a game of wits as they try to outwit us. So often, I see patients have really weirdly excited reactions at the prospect of some horrid procedure. I never understood why, although I am now starting to see that to the Munchies, this is all a very, very exciting game. They're not just competing with each other, but also trying to outwit us: sure, they may never have finished college, but I bet it makes them feel clever when they manage to lie to us and get away with it.

No. 399954

>>399885
Pretty sure a good percentage of people have MRSA on their skin. Any staph bacteria is normal on your skin and nose and any open areas. Even getting it in your stomach is not an issue. The problem is if it gets into a wound, and especially if it gets into your bloodstream. It hits people with weak immune systems the hardest, including children and the elderly. And the only difference between mrsa and normal staph is that mrsa is resist to a type of antibiotics, but can still be treated by other types. Unfortunately for her, she’s only carrying mrsa and isn’t sick with a fatal illness. Bummer,she’ll have to find something else to debilitate her.

No. 399955

>>399885
Why do munchies think people want to see their messy rooms?

No. 399961

>>399955
they used up all of their spoons taking pictures and filming their vlogs while trying to remember the broken and scattered pieces of their medical 'history'

No. 400051

File: 1507442355318.png (162.2 KB, 748x1095, IMG_5903.PNG)


No. 400052

File: 1507442375736.png (267.62 KB, 750x1334, IMG_5900.PNG)


No. 400053

File: 1507442404628.png (299.87 KB, 750x1334, IMG_5901.PNG)


No. 400054

File: 1507442429113.png (267.31 KB, 750x1334, IMG_5902.PNG)


No. 400108

>>399886
>So often, I see patients have really weirdly excited reactions at the prospect of some horrid procedure. I never understood why, although I am now starting to see that to the Munchies, this is all a very, very exciting game. They're not just competing with each other, but also trying to outwit us: sure, they may never have finished college, but I bet it makes them feel clever when they manage to lie to us and get away with it.

For some, it does indeed. I've read "Playing Sick?" by doctor Feldman. Most FD/Munchausen patients that admitted to factitious behavior either did not know why they did it or did it purely for attention. But one woman admitted that the primary reason why she did it, was because she got a kick out of outsmarting doctors. She called doctors 'the most highly trained professionals in the world', so she got really excited if she was able to elude them.

No. 400125

>>399869

I know people who've paid for their legitimately needed wheelchairs, because waiting for months is not fair when you're asking someone to put their life on hold. But SHE GOT A MOVIE PROP? WTF? that's not even measured for her! Also I bet she's the kind of munch who loved that film and saw herself as the romantic lead tragically disabled…. most disabled people I know HATED that film!

saged for rage

No. 400148

>>400108

Well, that just makes me ecstatic about spending my Sunday on call treating these fucks.

In a sense, I count myself lucky - my hospital is in a shithole area, so most of the people are either legit sick (usually involving alcohol) or malingering/borderline malingering (example: woman who needs to get out of abusive relationship pretends to have 'nonspecific, ill-localized abdominal pain', which is THE flashing Munchie red sign). The former are easy to treat once they are out of the combative phase, and the latter are at least not sociopathic fucks who do it for Instagram likes. For some reason, I can respect someone who wants to get out of a shitty job more than someone who lies to me so they can flash their tubes and treatments on Instagram.

Most of the people on the ward don't know that I used to have a feeding tube myself (to keep my weight up during chemo). It's definitely a valuable experience for a GI doc - helps me filter out the more blatant bullshit.

What is perhaps so very obnoxious about many of these spoonies is that they go straight for the expensive stuff. Fine, you want to be 'sick', here have some amoxiclav. But no, they need their latest spoonie memes. It used to be mito, but then tests involving thymidine phosphorylase came along and it turned out that you can't just claim MNGIE because you threw up twice. Now, it's the EDS/POTS/GP cluster, which puzzles the fuck out of me: where WERE these patients say, 30 years ago, when virtually all cases of GP were known to be related to a diabetic neuropathy of the interstitial cells of Cajal? It's kinda odd that with Facebook and Instagram, a huge cohort of patients who have somehow never been documented in medical history have somehow appeared out of thin air. I can already see the next memes: CRPS (not THAT hard to fake, and gets you nice drugs and a wheelchair!), PANDAS (beloved of MSbP parents and parents who just can't accept their kid is a little shit), MTHFR and autoimmune encephalitides (a friendly neurologist told me they have a LOT of people claiming to have some AI, usually NMDARE, which puts docs in a difficult position: the only truly objective test is a brain biopsy, and patients are not unreasonable demanding to be treated empirically without confirming dx using a possibly v risky test. But beyond that, symptoms are all subjective, and not that hard to fake (reportedly, a patient nudging docs towards NMDARE was found to have Brain on Fire, a book by an NMDARE sufferer, Susannah Cahalane, with her at all times - carefully annotated and labeled like a med school textbook). This will be such a fun time.

No. 400150

>>400125

I think that was largely because wheelchair services refused to give her a powerchair because she did not meet the criteria, and more importantly, it is NOT good for her. What she needs is training her body to live with orthostasis, not spending all day in a wheelchair that is halfway to laying flat and further deconditioning her circulation

No. 400152

>>400125

LOL both me and husband (incomplete C3 quad due to transverse myelitis) HATED it.

When hubby was measured for a wheelchair, they were looking at stuff similar to the wheelchair Chloe P-L has (invacare Storm 3G - that's similar, right?), as he's suffering from quite a lot of spinal pain and anything that makes him more comfortable is worthwhile. The OT suggested that actually sitting more or less upright would be better for him in the long run, as it would keep his circulation from getting lazy. He's using compression garments to avoid DVTs and pooling, and two straps to keep him upright, but is otherwise sitting in a more natural position. So I don't understand why Chloe, who is neurologically just fine and is not paralyzed, needs a reclining wheelchair when it doesn't help her Pots or whatever she claims to have. Also, according to the OT, if you have feeding tubes or an ostomy (or both, as my DH), a reclining wheelchair will only contribute to constipation. Not sure how or why but it makes sense - DH never had issues with that while a lot of quads with similar injuries do.

No. 400153

>>400152
Reclining wheelchair/wheelchair, in general, is just going to make her "pots" aka deconditioning 100x worse. kek

No. 400155

>>400148
As a person with a few of these things listed, it pisses me off that munchies jump around from each of them as their illness of choice. They would never be so excited to deal with the actual shit that comes with each of them if they truly had them.

No. 400158

>>400153
I'm not wk'ing for Chloe but i do actually know someone who depends on a reclining wheelchair because dysautonomia causes her to pass out while sitting. Without the possibility to recline in her chair, she would be bedbound. So it could actually be a help for some people
But 100% agree, wheelchairs for POTS should only be a very temporary or occasional solution

saged but borderline blogging

No. 400164

>>399501

absolute kek. iirc she started out trying to be the most sickest ana princess ever so clearly she knows how to manipulate people well. it's sickening

No. 400167

>>400158

Rarely, there might be a point in having a reclining wheelchair for e.g. someone with POTS recovering from sepsis. It's a short term solution while conditioning takes, whereas most of these fuckers are using it as a long term lifestyle. Because how better to make your invisible illness visible than the Munchiest, most overpowered wheelchair you can get, so that you can scoot your perfectly fine body in a wheelchair designed for people with extremely limited function.

No. 400168

>>400152

I wonder when ostomies are going to be the new Munchie accessory.

No. 400172

>>400168
@mollyollyostomy makes sure to lift her shirt in EVERY FUCKING PICTURE she posts whether it's appropriate (is it ever?) or not and all her posts consist of making sure we know about her drainage and the noises her poop shoot make.

No. 400173

>>400158
But was this pots or dysautonomia? Dysautonomia is an umbrella term so where one condition could benefit from the reclining chair, POTS would not. Passing out upon sitting sounds like a positional type dysautonomia different from POTS, like OI, but POTS could be the culprit (since you only specified dysautonomia, I cannot assume you meant POTS).

Rarely would a knowledgeable physician knowing anything about positional dysautonomias or deconditioning suggest any sort of chair long term for POTS or a few other dysautonomias, but in situations where it can help you actually stay out of bed, it’s obviously the better option.

No. 400189

File: 1507471098480.png (196.65 KB, 675x1091, IMG_1965.PNG)

Dani gets called out

No. 400190

File: 1507471130005.png (243.26 KB, 750x1041, IMG_1966.PNG)

Part 2

No. 400203

>>400125
People always post this crap when the subject of buying chairs comes up and it. is. not. true.

If you really do legitimately need a certain type of (expensive, unusual) wheelchair, then wheelchair services will pay for it. People are already blogging too much on this topic so I won't say more than that, but stop pushing the idea that buying yourself a fancy chair is legit.

No. 400205

>>400190
seems like a lot of her followers are calling her out at the moment. I think they're getting sick of her blatent attention seeking.

No. 400217

>>400173
I know she have POTS but i do not know whether it's that specifically or another kind of dysautonomia. But OI is a factor for sure

No. 400220

>>400203
I agree to some extend! If you need some special kind of electric chair, you will get one. But the process can be long.
But people needing a manual chair often just get the cheapest option insurance or what so ever can get away with. But in general manual chairs for non-paralyzed users are a whole other thing

No. 400224

>>400168
God, I hope never. Although somehow I don't think that would stick. Having a bag of poop or piss on your belly probably can't compare to the glamour that feeding tubes appear to be. Maybe people would go for MACE stoma's, though that would require people to actually do 24- or 48-hourly rectal irrigation first, which is no fun at all even if you actually need it. Maybe Mitrofanoff appendicovesicostomy? Nah, I think obstipation is easier to fake or self-induce than bladder retention.

But if not ostomies, what would it be? Ports already seem to be in the mix, so they don't count. Maybe home oxygen therapy? Easy to fake, but it doesn't require an invasive procedure or surgery like feeding tubes or ports do. Maybe electric stimulators, be it for bladder, bowels, stomach or pain? Or intrathecal pumps, either for opiates or baclofen?

No. 400227

>>400203

It depends. Sometimes it takes considerable time for wheelchair services to get their act together, and often the alternative is waiting in the hospital or being stuck at home. After being released from rehab, DH was told it would take at least 2-3 months to get a suitable wheelchair. We were fortunate as we got our hands on a good loaner, but I can well imagine that people being stuck with the wrong kind of wheelchair may fancy getting the wheelchair through another route, even if it zmeans paying for it. For instance, a friend we know was provided a temp wheelchair that had a bit of an awkward seating shape and it really interfered with his self-cathing. A lot of these small issues can become a pretty big deal when it comes to the most severely disabled.

Sorry for the blogging.

No. 400228

>>400224

Well, a lot of Munchies used to have stims in the early days of this madness… they abandoned it because it would have meant an expectation of some recovery. Although I do recall some Munchies, one in particular who at some point was allegedly on deaths door and is now a mother of two - the stim has carried this expectation of recovery that meant a lot of these Munchies had to given up. Good on them, btw.

Maybe trachs are the next logical progression. I've already seen a few Munchies claim various respiratory issues and get BiPAPs (if you did not have breathing issues before, spending a lot of time on BiPAPs and CPAPs is guaranteed to fuck up your diaphragm) and, ever so puzzlingly, the Vest (normwlly used for chest physio in CF)…

No. 400233

>>400155
Ditto. They all want the label but they won’t want all the pain, Meds, and other crap that actually go along with having these disorders. Saged for rage sorry.

No. 400238

>>400228
We should set up a pool. I'm not sure about trachs though. I think it's more scary having a hole in your throat versus a tube in your stomach. At least, it would be for me. You do have a point about the stimulators though. It would have to something that comes with a need for ongoing treatment, like the feeds that come with a feeding tube, or the infusions with a port.

In that respect, an ostomy isn't fun either. Yes, you do do need the wafers and bags, but after the surgery you usually are either cured or you get a lot of relief from whatever condition created the need for the ostomy.

Right now I can't think of other treatments that would be good candidates to be the next munchie hype though.

No. 400239

>>400228

I wonder how they convince doctors to give them the physio vests if they don't have CF tho?

No. 400240

>>400228

oh and I think we're going to go full circle back to "I have an incurable brain tumour".

No. 400248

File: 1507480757233.jpg (222.88 KB, 387x566, wheelchair.jpg)

Speaking of wheelchairs: The swiss cow wants a new one and her insurance company hasn't approved this one yet.

She can smile while having unbearable nervepain and she's able to test a wheelchair! And she has fun! Superstrong fighter sarcasm off

She thinks this one will make her less dependant, because she can't use her manual one thanks to her inflammed shoulder. And the car of her bf is too small for an electric wheelchair. I doubt that you can use such a big wheelchair. Maybe as a bicycle, but in a grocery store? Or in the village? I'm no expert on this so maybe I'm wrong.

No. 400250

>>400248
That's just a manual wheelchair with an add-on motorized bike. It's used like you say, as a bike. If you were to go for groceries, you doff the add-on part and go into the store in just the wheelchair. The add-on part is only for longer distances.

No. 400251

>>400250
O wait, this one isn't even a bike, it just a fully motorized add-on. Well, same difference. They are used in exactly the same way as an add-on handbike (power assisted or not) would be used. (Except that a handbike can also be used for sports, of course. But the transport purposes are the same.)

No. 400259

File: 1507482481209.jpg (248.37 KB, 2267x616, dUOMeyS.jpg)

Look who's a fan of Jaquie!

No. 400261

>>400248

Clearly her definition of unbearable pain is from a different book. In my experience, unbearable nerve pain means being on the verge of passing out, not giggling all over the countryside.

No. 400263

>>400248
Know of any more German-speaking munchkins? For some reason I find them particularly amusing. The German language just amplifies the whining for some reason and makes it even more obnoxious.

No. 400268

>>400251

There are some newer add-ons that are smaller and are also appropriate for indoor use. But her whole setup looks terribly fitted.

No. 400271

>>400224

Mitrofanoff is actually the newest trend here among munchies. Just claim you keep peeing your pants because you can't control your bladder. Insist that you have to cath yourself so you can't pee your pants. Then make clear you abso-fucking-lutely cannot self-cath because of your poor fragile EDS hands et voilà!

No. 400309

>>400263
I only know rheuma_esgibtkeinzujung and her instagram is a goldmine. She follows a few really OTT spoonies, but no one particular comes to my mind.

>>400261
She was a nurse and I guess this makes it even worse. And she's able to smile because of the asperger autism. She has CRPS in one of legs and it doesn't seem like it at all.

>>400268
She normally has a pink wheelchair. She waited for the pink for over a year? And it seems too small. Guess she can't use the pink one with the addon. Her insurance company doesn't want her to have a wheelchair, because she's still able to walk with crutches.

No. 400345

>>400248
Heartfilledminds on tumblr just got one of these too. She’s always been pretty OTT; not really sure if she’s munchie or not.

No. 400367

>>400271
No… people actually want that? I know these people are crazy but that’s beyond if not completely necessary holy balls man! Sage for non contribution but still WTF?

No. 400395

>>400271

Isn’t it a huge surgery?

No. 400396

>>400271
Really?

I'd expect that complaining of incontinence without signs of detrusor instability during urodynamic testing would get you a script for oxybutynine at most, maybe some botox injections. But even for those I'd expect a urologist to want proof of an actual problem. Most causes of incontinence aren't even solved by intermittent catheterization, and if there is actual detrusor instability that doesn't respond to meds and/or botox, a Mitrofanoff wouldn't even solve that. And stress incontinence has other types of treatment that are far less invasive. So for what kind of incontinence will a urologist even do a Mitrofanoff?

No. 400399

>>400396
It’s usually chronic urinary retention that’s the problem - not trying to give munchies ideas - but EDS bladders can stretch and hold huuuuge amounts of pee and then they can’t go.

No. 400401

>>400395
Yeah, it is. It's more complicated than a conventional urinary diversion (Bricker urostomy=Ileal conduit) and has quite a high percentage of revision surgeries.

No. 400405

>>400399
I know, that's the reason I know my way around these procedures, kek. But urinary retention is testable. But so is incontinence, so I don't get how people will get a Mitrofanoff for saying they are incontinent if they aren't. And I don't even get why someone would do a Mitrofanoff for incontinence in the first place.

No. 400418

>>400405

I see what you’re saying now. No, I don’t understand why they’d do that either.

I once heard a urology nurse say “we teach kids who are blind to self cath” yet I’ve seen quite a few EDS people claim they can’t…..

No. 400426

>>400399
This happens to me hence I’m so confused as to why someone would even want that- being cathed (obviously way way less invasive,) but it’s still extraordinarily unpleasant (they’d have to go through that for awhile first) and I’m certain a cystoscopy would be in order and that wasn’t exactly a picnic. All of this and more would be done before something so invasive but even the aforesaid were too invasive for me. Notwithstanding if a Dr actually did commit malpractice like that said munchie would never stop bitching about the stoma; it’s always something and if a “problem” is fixed there’s always another on the horizon. When you look at the number of hashtags of disorders on their insta’s, one would think the odds of having so many disorders would be astronomically impossible, yet it seems no one bats an eyelash. I don’t get it.

No. 400427

>>400418
>I once heard a urology nurse say “we teach kids who are blind to self cath” yet I’ve seen quite a few EDS people claim they can’t…..
I've said it before, but if you can unzip your pants and drop them down, I don't see a reason why you can't self cath. If you can't undo your pants, I see why you can't do it.

If it's about the functionality of your hands and arms, that is. Of course if your urethra spasms or something, that's a different thing.

No. 400436

File: 1507492218569.png (2.2 MB, 1536x2048, 117F77D1-667F-4EEF-AB40-BA16C0…)

Another munchie who only uses the child-sized tube feed bags. Sure, you can use them if you’re willing to refill them every few hours, but it’s impossible if you’re trying to tube feed a normal overnight amount. Many home health companies and insurances will only provide the small bags to children. Of course getting in enough calories isn’t a worry if you’ve got an eating disorder.

No. 400439

File: 1507492279117.png (277.91 KB, 1536x2048, 50B41E8D-0A98-43E5-9DF5-F628AF…)

>>400436
Here’s the caption

No. 400443

>>400427
If your EDS affects your hands so bad you can’t self cath, you probably wouldn’t be able to do anything independently. Including using a touch screen phone (harder on fingers than people realize) and running an active social media account. Attention whoring much?

No. 400452

>>400436
JFC now the tongue! I just can’t with these assholes.

No. 400458

>>400443

Maybe it's a slightly different action, but when my hands are bad I can't use tampons… and I guess with catherisation there's a time-pressure element? So waiting for an injury to subside might not be practical.

*not WKing, just musing

No. 400460

>>400418

Yah, I call bullshit on the 'people with EDS can't selfcath'. DH (incomplete quad) has basically no fine motor skills in his hands and rehab kept at it trying to teach him to selfcath until they worked something out rather than jumping straight to a Mitro or a suprapubic. I am no expert on EDS but I am pretty sure that if a quadriplegic with feeling in about two fingers in his left hand and almost zero strength can selfcath, their poor widdle joints are gonna be just ok.

No. 400465

>>400224
Skip for stimfag blog if you don’t feel like reading. I swear it’s not a “I have it worse” post, just pure rage.

Oh hell no. I’m on the road to finally getting an Interstim for my shitty bladder and painful urethra, and it took almost five years of multiple cystoscopies, biopsies, cancer scares, pelvic floor PT, PTNS, and piss-myself pain. I took every possible medication, new and old. Gained weight from trying steroids for it. I can’t walk more than quarter of a mile at a time without feeling like my urethra is being invaded by razors. I can’t sit or stand for a loger time. I live on pyridium constantly, but it’s not enough.

It’s two fucking surgeries. First one to put that shit in to make sure it works, another one to put it in for good if it does work or take it out if it doesn’t. It’s my last chance at relativity pain-free life. I now feel the rage every person with POTS and EDS on this site must feel while reading about those fucking spoonies.

Again, sage for ragefag and urologyfag.

No. 400482

>>400460
Well, the hands aren't the only body part you need to cath. The shoulders and elbows have to work too. If you can't use those, it's pretty darned hard to reach down there. But I agree that most EDSers would be perfectly able to cath.

>>400465
I feel your pain, anon. I won't blog even more, but I feel you. I really hope the stim works for you.

And yeah, as an EDSer I am mightily pissed off (pun intended) that EDS seems to be the new munchie disease. I wished they could come up with their own, non-existing disease so they didn't bother actual patients. I mean, what was wrong with Morgellons?

No. 400487

>>400482

I keep suggesting Morgellons! It's rare, it's controversial, and it came from the internet! It's perfect for them!

No. 400490

>>400460

I have a SCS following multiple back surgeries that have failed epically and left me in a shitload of pain (I had chemo that messed with my bone density and caused a lot of tiny fractures in my vertebrae and damage to my lamina). After the fourth failed spinal fusion and laminectomy, I finally got a SCS. It saved my life and my job (I needed so many pain meds, I couldn't function). I hope the stim works for you

Sage for unusual positivity.

No. 400515

>>400487

I often thought of just agreeing on creating a syndrome that can have any symptom and is diagnosed solely subjectively, treatment is giving the patient whatever toy they want without bothering to spend time on why they're not improving or how they can be fixed.

The part that pisses me off (sorry for self righteous medic blogging here) is that most people who go into medicine are a little obsessive about their patients. We spend a A LOT of sleepless nights wondering about why despite the best possible treatment a certain patient doesn't improve. Not once my wife has woken up to me sitting at the computer at 4am looking up possible new treatment routes on PubMed, only to have the patient then subvert it by interfering with it or sabotaging it. Now, as said, sometimes I have sympathy with malingering as an idiom of distress. I had a patient once who had constant bad nausea and vomiting, and did not respond to classical antiemetics. So I kept trying more and more exotic antiemetics, even going to trials for drugs. It turned out she was self inducing it all because this was the only way she could get away from her abusive husband. It pissed me off at the time but I came to terms with it. What I can't come to terms with is people doing this shit to get Instagram popular, to be special and celebrated as heroic when all they are are lying little shits.

And I have no idea how the anon married to quad bloke can be so calm… I would be fucking pissed beyond belief if my loved one were truly unwell and I had to see all these healthy teens putting themselves through harsh procedures just so they can get likes and be popular. People just don't appreciate what they have until its gone.

No. 400522

>>400482

As long as either your shoulders or your wrist or your elbows work, you can use any of those three to induce and push past the sphincter. There are even tools to help people with severe paralysis self cath - the occupational therapy girls here have some amazing shit, and I really think there are very few excuses for a Mitrofanoff in someone with EDS, especially considering the risks.

No. 400527

>>400522
Maybe, but if you can't undo your pants, that's still not gonna work.

I didn't want to blogfag but can't react to it without doing so: I was in a position for some time where I couldn't go to the bathroom myself because of my shoulders. I do agree though that cathing doesn't need much in functionality of either hand or arm; after my shoulder surgery I very quickly learned how to do it.

No. 400554

>>400527

My best buddy from med school had early onset MS. By the time we graduated, he had very limited function in his hands and was using a wheelchair full time. Anyway, even way back, he couldn't handle buttons and zippers, similarly to the situation you describe about getting your pants down. So his then-girlfriend and later wife, who was at the time working at a stroke ward, came up with a great idea and converted most of the buttons and zippers to velcro closures. I think it gave him a lot of independence back, although sadly he ended up taking his own life a few years later. The point being - there's a solution around most problems :)

No. 400559

>>400515
>Now, as said, sometimes I have sympathy with malingering as an idiom of distress.

I get that. I do agree though that it really sucks for the doctor in scenarios like the one you described. I would wish someone like that woman would instead trust her GP enough to ask for the help she actually needs, instead of a referral for whatever specialist.

Now I'm not sure how Munchausen by Internet fits in here, but factitious disorder comes from distress as well. If you are able to cope with normal life, you don't munchie yourself into having a wheelchair or feeding tube. Those people miss certain abilities or (coping) skills to be able to live their live as a healthy person.

I find it a hard condition to deal with, because these people are actual patients, yet they also very clearly lie. There is an element of free will here. I think the best analogy would be that of an alcoholic: they turn to alcohol because there's something in their life they can't deal with. And although they choose to drink that first glass, after a certain point they loose the ability to make a conscious choice not to drink. And stopping is very, very hard.

But as I said: I don't know how Instagram and Facebook factors into this. Sometimes I think that many people there actually do it for some sort of fame. In my mind, that's not the same as a factitious disorder patient who was emotionall neglected as a child and feels they can only bind people to them if they are sick. But I may be wrong about that, I'm really not sure.

No. 400570

>>400554
The zippers or buttons weren't the problem in my case. I had my arm in a sling so I couldn't reach down. Belief me, I had a whole team of OTs, PTs and rehab technicians work with me for months. Thank God it was only temporary.

As is my horrible blogging, which I will stop now.

No. 400622

>>400345

I agree she's OTT, but her insurance paid for it so she's probably not a munchie.

No. 400623

File: 1507501316209.jpeg (549.69 KB, 750x1086, 9C669680-8563-48D7-9054-360C81…)

100% definitely (sarcasm) looks like someone who is so ill that they’re worried their “CVID” will turn a mild sore throat, some swollen glands, and a mild fever (something that, surprise, happens in autoimmune diseases – 3 of which she claims to have – on a normal basis) into a sinus infection or bronchitis.

Correct me (a person with CVID) if I’m wrong, but even though being sick can weaken your immune system to catch something else, your original illness is not all of a sudden going to develop into something else? Contracting a SI or bronch a lot more frequently and easily in CVID is common, but an immunodeficiency doesn’t defy the laws of microbiology and turn one bacteria / virus (or an autoimmune reaction) into a whole other thing?!

No. 400625

>>400622
Just because insurance had paid for it doesn’t mean she’s not a munchie (ie all the munchies who manipulate / trick their doctors into getting doctors and insurances to believe things). It was the government who paid for it (she’s in a socialized medicine country and does not have private insurance), and we see munchies like JBN and MBV (among others) where the government will pay for their treatments even though it’s pretty obvious they don’t need it…

No. 400630

>>400625

I think MBV pays privately for the Breakspear stuff. The NHS likes to keep the woo woo shit separate from actual medicine.

No. 400633

>>400623

Which cow is this?

No. 400634

>>400623

Also daily antibiotics won't protect you against viruses. Enjoy your thrush though kek

No. 400637

>>400633
bendywarrior on tumblr

She’s been one of our fave cows lately

No. 400638

>>400634
>>400623

And daily antibiotics are NOT a standard treatment for CVID kek. Not only is it a bad idea (creates resistance, fucks with the body, many things are not bacterial), most people with CVID are antibiotic resistant – one of the other reasons we can’t fight things well…

No. 400653

Watching Family Feud and one of the top answers to “Nobody Wants to See Pictures of Your What? was “medical procedures/surgeries” kek

saged for non-cow

No. 400691

>>400623

I don't think she understands what CVID is and how it works. Nor does her doctor if he prescribed her prophylactic abx long term, which is fucktarded. The only time we give CVID/SCID pts prophylactic abx and avx is if they're having a surgery or dental work done to prevent nosocomial infective endocarditis. In very rare instances, patients with CVID/SCID who get central lines might get a short course of prophylactic abx to make sure that if they do go septic, they don't keel over before we have time to put down the paper. But it's a rotten idea in general, and it's very heavily discouraged. If I tried to do it, in my infinite wisdom, I'd get the hospital pharmacist calling my boss and then I'd be in trouble….

No. 400692

>>400630

Not quite, the NHS does from time to time pay for weird unproven shit, but Breakspear could not operate within the NHS system for the sheer volume of cost ineffective woo. That's why they're self funded, that is, patients pay exorbitant prices for a £10 banana bag because they know few places are unscrupulous enough to let them persist in the sick person image rather than tell them to go see a shrink.

I am seriously thinking of setting up a clinic to capitalize on these Munchie fucks. Every patient will get a professional opinion saying they're the most severe case we have ever seen, we'd take all their bullshit diagnoses seriously, prescribe the most basic meds for them and charge them through nose and ears. Think of it as a public service - keeping these assholes out of the NHS would be a blessing.

No. 400693

>>400634

Thrush is not viral, it's a fungal infx.

No. 400694

>>400653

Yeah, I may be a doctor but I get uneasy when people show me or tell me about their medical stuff outside work. Err… I don't care? Plus, just why would you? It's a weird sort of exhibitionism. I'm not saying sick people should hide - although I would never in a blue moon have felt the need to inform everyone I worked with about my tubes and stuff, and unlike most spoonies, I don't get upset when someone says I don't look sick. I spend a LOT of time trying not to look sick, so it feels like a compliment on a job well done rather than invalidating my struggle. Most of my coworkers did not know I had cancer until I started losing my hair and using a cane to relieve bone pain. At times I genuinely wonder if there's something organically wrong with people who don't seem to have a stopgap reaction that would make them think twice before baring their tubes and bags in the public.

No. 400713

>>400693
Yup, it’s fungal, but also a common side affect of antibiotics. Also, antibiotics can cause yeast infections in women. Fun times.

No. 400714

>>400694
Most normal chronically ill people feel the same. Trying to be a normal, functioning adult is hard enough, more so with a chronic illness, and even more so when people are staring/asking dumb questions/questioning your ability/treating you either like you’re fragile or totally incapable. Outside the ott side of the spoonie community, no one gives a shit that you’re sick.

No. 400716

>>400630
MBV pays for her own treatment (or her parents do). Her family is well off. Other Breakspear people are fundraising, or can't go as often as she can. There's a circlejerk of fundraising among people with fringe diagnoses who attend non legit clinics.

MBV does use the NHS too but it's only a subsidiary. This is why it's, for me at least, impossible to be pissed at her like I am with other uk people who deliberately exploit the NHS (princess cpl who of course isn't wasting resources!). It may be odd but if this is her route to feeling better, okay. She's way healthier than she used to be - I guess from reversing deconditioning.It's people like CPL, Nicole and Chloe's chronicles who are the problem in the way they hoover up scarce resources.

Woo shit isn't good but if they pay for it themselves and it cheers them up and distracts them, then okay.

No. 400718

>>400716
>>400630

Regardless, the point is that there are munchies that get stuff approved by insurance. The two are not mutually exclusive.

No. 400719

>>400638
And isn’t there a multitude of different antibiotics that each treat specific types of bacteria? If daily antibiotics actually worked to prevent illness, wouldn’t she have to be on nearly every type to cover all the bases? Just seems impractical, even without throwing in side affects and encouraging resistance.

No. 400721

>>400718
Unfortunately all it takes is a doctor that’s willing to say you need it, whether you actually do or not. Look at Lyme audrey and the chronically jaquie thread, both of them have tons of things they absolutely don’t need.

No. 400752

>>400719
Yes, there are specifics to treat certain things, though your typical bacterial infection can be treated with the same type of abx that another typical bacterial infection could be treated with. The problem is, very few major illnesses are caused by bacteria, thus a daily antibiotics just ruin your body, cause things like UTIs (which you get freaking enough of in general with CVID), and not even treat half the shit you contract with CVID (mainly viral infections, and bacterial infections that are not typically abx-resistant but do not respond well to abx in CVID patients)

“General antibiotics” are about as helpful as a placebo (especially in CVID) and are, arguably, more dangerous long term (for the patient AND society) than most other medications. General abx (and use of abx in viral/fungal infections) help create more abx-resistant illnesses!

No. 400760

>>400719
I take daily antibiotics for cystic acne. There's all different types. She needs to not obsess over a sore throat.

No. 400780

>>400760
And you use it in a thing that, hmmm, is caused by bacteria and in which daily abx is standard treatment!

Worrying about some aches, sore throat, mild fever in someone who claims to have three autoimmune illnesses is like someone with … let’s say arthritis worrying about grinding joints that have been there for awhile.

Researching a little more shows that preventative abx have traditionally been used as a way to prevent illness in CVID, however, that practice is being trickled out for the reasons I have exhausted previously as well as other preventatives and medications being more effective (immune replacement therapy like IVIG, immune boosters, as need abx when indicated, and better management of the disease(s) causing CVID – like autoimmune disorders)

No. 400786

File: 1507523201198.png (2 MB, 1440x2560, Screenshot_20171008-211648.png)

So she is having a near anaphylactic reaction and has the ability to Instagram about it ? Shit, even when I'm having a moderate reaction the last thing I'm doing is looking at social media much less my phone. And she is wearing all that make-up? I can't even wear certain chapticks and definitely cannot wear any foundation. Very rarely I can wear some eyeliner and mascara and even when i do it lasts 30 minutes before I itch my eyes out. Oh, and she commented on one of her posts saying she either has MCAD or a carcinoid tumor. How about the third possibility that you went through 3 scans that showed absolutely nothing was wrong with you!?

No. 400787

File: 1507523245558.png (1.88 MB, 1440x2560, Screenshot_20171008-211651.png)

Her poor doctors.

No. 400815

File: 1507531297059.jpeg (1.21 MB, 1242x1819, DE386157-2EB2-47C5-A8AC-19DBE9…)

I honestly can’t tell if this girls a munchie or not. She seems like she wants attention but also seems like she wants to get better. She also follows all the basic munchie girls.

No. 400824

>>400815
She’s apparently a GP gainer, which I doubt exists. If you’re not getting enough calories, you lose weight, that’s just how science works, right? Her insurance has flat-out denied most of what she claims to need, even with her doctor’s input, which is usually fairly telling. And she acts like all the munchie cows, showing off her tube and whining and posting about how she’s practically dying, so she’s either a munchie or way, way over dramatic and ott

No. 400827

>>400787
If you’re having a mast cell attack, you’re not emailing your doctor to ask what to do. You’re either treating it at home or going to the er. And she’s posing for a selfie, which pretty much sums up that she’s fine.

No. 400829

File: 1507533138703.jpeg (1.02 MB, 1242x1815, 0006C807-FF7C-4CD9-83C1-ADFAA9…)

>>400815
This picture screams attention. Tons of hashtags were used on this one. She wants attention but then claims to hate everything going on for more attention. Munchie antics

No. 400831

>>400815
been following her for awhile, gp gainer is just stupid, but its always one thing after another, infections, ignoring symptoms for something bigger to happen. she doesnt seem as aggressive as the other munchies but she certainly aims for something more serious than what is going through.

No. 400832

>>400452
isnt it fun to have a tube!!?

No. 400842

>>400815

She’s not a hardcore munchie but she’s a munchie. She’s all over the gastroparesis Facebook groups showing off about her serious illness. To be fair she’s had some tube complications but she wanted that tube, so, suck it up cupcake.

No. 400845

File: 1507538859637.png (313.45 KB, 1280x1918, IMG_0368.PNG)

Not as much of a joke as claiming to have a diagnosis the NHS doesn't issue (leaky gut syndrome, really?) and another that she has zero symptoms for (NMO). This little miracle claims to have a condition that kills, paralyzes and blinds people… and has exactly zero symptoms for it. I wonder if it has been diagnosed by an actual doctor or the same woo doc who diagnosed the leaky gut.

I watched a friend die from TM caused by NMO… needless to say it's pissing me off no end to see it used as the new Munchie badge by this asshole. She constantly keeps oscillating between NMO and MS when in reality, the diagnosis and differentiation is quite simple (you would not normally be dx'd w/NMO unless you're AQP4 positive, so the whole malarkey of having both, then having NMO only, then suddenly changing it to MS just doesn't happen… especially as NMO responds to different treatments and some MS treatments are harmful in NMO).

No. 400846

File: 1507539002190.png (272.12 KB, 1257x1471, IMG_0369.PNG)

>>400845

Also let's not forget, this is the girl who hangs out in a hot tub… with a demyelinating disorder… while claiming a GI bleed… drinking champagne. Kill me now.

No. 400849

>>400787
And suddenly she gets daily reaction.
Why did she get the epipens? For Anaphylaxis? It sounds like she bothered the poor doctor so much to get rid of her.
The make-up part is really weird. She probably knows that it triggers whatever is wrong with her, but it works because suddenly her mother is giving her ton of attention.

No. 400850

>>400845

Oh holy shit. I'm with you. TM paralyzed the love of my life overnight, turning an ex-performance athlete into a ventilator dependent quad relying on me and his nurses for everything, from setting up his feeds through medication to changing his bags. I see him fight so hard every day to get some vestiges of function back, but it's been almost two years and doctors aren't optimistic. He's an incomplete quadriplegic, though, and while at the present he has function in only some of his fingers on one hand, we hope that with time this will improve. Perhaps young Paige ought to hang out with some people whose lives were devastated by transverse myelitis. She wouldn't want to fake NMO after that!

No. 400851

File: 1507540581739.jpg (180.49 KB, 624x624, IMG_0363.JPG)

Let's talk about the satanic creation called Spoonie Living App… here are some of my favourites. #stupidthingwarrior #dumbspooniefighter

No. 400852

File: 1507540618197.jpg (84.6 KB, 640x640, IMG_0362.JPG)

More SpoonieLivingApp cringe…

No. 400853

File: 1507540655371.jpg (134.61 KB, 640x640, IMG_0360.JPG)

In case 'Tummy Trouble Warrior' didn't out you in a coma….

No. 400854

File: 1507540681342.jpg (297.73 KB, 1080x1080, IMG_0357.JPG)

#ListEverySymptomWarrior

No. 400855

File: 1507540713703.jpg (163.68 KB, 640x640, IMG_0364.JPG)

#AttentionSeekingQueen

No. 400864

>>400851
You WHAT? WTF. What does that app even do? Give you pre-made hashtags for every symptom out there to click on, or whatever?

No. 400873

>>400786

I call total utter bullshit. If you're trying to claim even mild anaphylaxis, don't post a close up of your face. I had my first anaphlyactic reaction this year. It was mild, managed with OTC antihistamines, but my eyelids swelled up and my lips too. Her face looks like there's a suspicious lack of anything going on.

Saged for blog-as-comparison

No. 400884

>>400864

It's Satan's own Instagram knockoff with pre-made spoonie stickers. A whine for every condition, and always a new tomorrow!

No. 400885

>>400786

Not an immunologist/allergist, but I have never seen anyone with anaphylaxis look this much like they don't have anaphylaxis. Kek at least rub your eyes, woman.

No. 400886

>>400884

I have a few of the conditions featured on those hideous labels, but the "warrior" thing irks me so badly. Most people who use that term in hashtags are the worst for whining, ironically.

No. 400887

File: 1507550610461.jpg (246.36 KB, 1080x1080, IMG_0358.JPG)

>>400884

I see your spoonie therapy cat and raise you this…

No. 400895

>>400887
What the fuck is a high risk MRI?!

No. 400896

>>400853

IBS warrior? She probably gets the poops from eating junk food and thinks it’s a chronic illness.

No. 400905

>>400887

Now you've drawn attention to this horrendous app, I wonder how many munchies reading this will now be using those stickers….

No. 400912

>>400460
I have EDS and CRPS Type I in both hands and when I have to I can self cath; it isn’t easy if my hands are numb or burning but it CAN be done. Sorry for blog fagging but just wanted to add that I’m in full agreement re: BS.

No. 400913

>>400487
I seconded that shit when you first brought it up. I swear it’s the perfect “Disease” for them. God when I learned about it in class it just gave me the creeps and since it’s such a “bad disorder” idk why they’re not chomping at the big.

No. 400916

>>400515
A few of us had discussed making up a Syndrome for a certain special person who seems to accumulate the disorders her viewers have. Sage for non contrib

No. 400917

>>400916

Ahhh. Maybe someone should comment on her vids and mention a completely made up symptom then see how long it takes her to copy it hahaha

No. 400918

>>400638
Correct me if I’m wrong but I thought for CVID you take immunoglobulins daily and only take antibiotics when you have an infection (and as the previous anon said, if you took antibiotics daily —> resistance —> what do you do when you’re actually sick and need abx?

No. 400919

>>400895

It's a spoonie term for when the MRI is in an area where they have a pacemaker implanted. Because you know, radiologists have no idea about how all that works, and they're just going to put you in a magnet and hope that it won't stop your heart. Lol.

No. 400921

>>400913

Because all doctors know Morgellons is delusional. Go straight to psych, do not pass Go, do not collect medical attention and munchie toys. I spent 18 months observing schizophrenics, and several of them insisted that they had Morgellons inflicted by the government or "them."

Munchies choose illnesses which are documented and listed in the ICD but whose diagnoses rely heavily on self-reported symptoms.

Have you read about "rope worms" and the MMS cult? I lost several hours one night on the thread on Kfarms.

No. 400922

File: 1507557620832.jpg (204.24 KB, 640x640, IMG_0370.JPG)

"ICU conqueror" Jesus.

No. 400924

>>400921

MMS as in…..methyl whateveritis?

No. 400925

>>400846
>>400851
God they’re such champions aren’t they? JFC kek sage for non contrib

No. 400926

File: 1507557868917.jpg (294.22 KB, 1080x1080, IMG_0371.JPG)

At least this one admits she's got issues.

No. 400930

>>400853
Forgive me for being triggered but I can’t stand it when all these people claim OCD because they don’t know what true OCD is. I guarantee none of them have the part 2 where they do the ritualistic behavior to neutralize part 1. Sorry for psychfagging

No. 400931

>>400930
sage for self post. as someone who actually has to do certain rituals multiple times i agree with what you just said. ocd isn't a self insult it's actually super painful.

No. 400933

>>400925
Sadly I think it’s miracle medical solution. I googled MMS and sadly found this.
http://www.faim.org/miracle-mineral-solution-mms

No. 400934

>>400933

Ahhhh, tied up in the big pharma conspiracy. Perfect for munchies whose docs won't treat their non existent diseases

No. 400936

>>400922
Good grief. "TPN cutie"?? Yeah, I'm sure having to rely on IV feedings that increase your risk of sepsis and liver failure and could potentially shave years off your life because the only alternative is dying of starvation right now is very, very cute.

I'm just gonna say it, but I think the spoonie community is hugely toxic and may be responsible for a lot of deaths now and in the near future. Which is especially sad because it started out as caring people reaching out to help others and to seek help themselves.

No. 400937

>>400936

This is what I like to think the actual friends I've made online through chronic illness groups are (caring/helping/advice). The wider lot though, it's all one-upmanship and self interest.

No. 400938

>>400694
t's hilarious that they are obsessed with collecting as many "invisible" illnesses as they can and then turning all of them into the most visible medical conditions possible. "but you don't look sick!" kek. to some people they look like they have a terminal illness, to others they look fucking insane, either way… not invisible.

No. 400940

>>400913
morgellon's is like a meth psychosis delusion though. it's too easily confirmed bullshit with a quick google search, so most munchies wouldn't go for it. plus, you can't really fool doctors with it since they know it's not real in the slightest.

No. 400942

>>400924

Miracle Mineral Supplement. A hippie woo friend of mine kept pushing it on me when I was in cancer treatment. Thanks, but no thanks!

Look-up the Church of Genesis II thread on Kfarms.

No. 400943

>>400942

I'm not sure if I dare. I already have blood pressure problems ;)

No. 400944

>>400930

Also, so many people conflate OCD with OCPD.

No. 400948

>>400921
I did some 'research' today. It turns out we all are infected with it, and it's caused by chemtrails. The fibers are actually nanotechnology and they are used to make those infected more susceptible for mind control. Just so you know.

But yeah, I think it's too much 'out there' for most munchies. Even if they pretty much create their own disease (in concert with woo woo doctors and/or actual doctors that may mean well but have forgotten about the scientific approach they once learned about) they like to take either an existing one and change it's definition (as happened with chronic Lyme) or they stretch the criteria so wide that a much larger part of the population now has the condition (as is happening with EDS). They like to base their diagnoses and symptoms on something that sounds real and to someone who only looks at it superficially, could have a scientific explanation.

No. 400949

>>400943

"Rope worms" would be hilarious woo if they weren't so gross and if parents weren't attributing their kids' autism to "rope worms" and forcing MMS enemas on them.

No. 400950

>>400949

Oh my god that's horrific. Also bad science. Very bad science.

No. 400953

File: 1507560876688.png (152.45 KB, 1078x606, Screen Shot 2017-10-09 at 10.3…)

I get the sense that bendycripple's boyfriend is Not Right in some way (obviously…) and they're probably co-dependent, but she's truly a nightmare girlfriend. Like other munchie partners, he seems resigned and helpless to the fact that her entire life is devoted to seeking attention for made up physical and mental health problems and sitting around vaping (while he waits on her hand and foot). If he's not giving her enough attention, she invents some improbable and super serious symptom, so he has to play Parent Figure and "keep an eye on her" (she loves this)/do everything for her. He's wasting his life.

The munchie gig is a drain on healthcare resources, yeah, but the emotional abuse they inflict on their loved ones is just as despicable.

No. 400955

>>400926

Lactose intolerant super hero??? They really do have to milk every little thing right?

No. 400968

>>400955

Hey, speak for yourself. There have been times I wished I had some superhero abilities such as iron sphincters or super speed to get to the bathroom…

No. 400972

>>400950

Every once in a while I get patients who claim to have them. They're shocked when I tell them rope worms don't exist. Some docs give them a course of ivermectin but that's no defense to 'you're all big pharma shills'…

No. 400988

>>400918
Immune boosters daily (vit C, other meds), IViG / SCiG weekly to monthly depending on severity. Daily abx used to be a thing but more and more research says it’s useless as a preventative.

No. 400989

>>400953
She found him at a group home…

No. 400999

>>400955
Was this an intentional pun? Good kek either way

No. 401004

>>400988
Thank for clearing that up for me anon. So why continue doing that stuff when they can so easily be called out?

No. 401005

File: 1507572360842.png (290.64 KB, 1277x1452, IMG_0373.PNG)

Lol, chronicallyp has an upset because someone called her (though with a typo…) on not being able to drain through an NG tube unless the bag is below the stomach (not stoma… I think that was a typo). Paige, since you're lurking here:

1) it's evident you don't have MS or NMO, so stop pretending.
2) Yay, you have an NG tube. I bet that took lots of whining. But you don't need to screw a Farrell on it just to look more pathetic.
3) You're full of shit. The angry, expletive-laden reaction calling people 'uneducated' when it's you pretending to have conditions that do not exist (leaky gut syndrome, really?) is just ridiculous. I don't know whom you conned into giving you a tube, but it's screamingly evident you just make it up as you go along.

Also, have you decided whether you'll be faking NMO or MS this week? Or will you just sit in the hot tub (haha absolute no no with any demyelinating disorder… as you'd know if you actually had one!) complaining about your gastric bleed while laughing and having champagne?

Few spoonies are like you, but you're not damaged, Paige, you're scum.

Ps. You can hide an NG under clothing, you can hide a Farrell under your shirt as most people with one tend to do… but you just HAVE to show the world your gastric contents, right?

No. 401014

>>401005

Jeez, I haven't heard "leaky gut syndrome" since my mom sent me to a chinese herbalist (don't ask). At least claim something that actually exists, kek

No. 401016

>>401005

I found her Facebook. She's definitely sick and definitely came close to death from sepsis (there are pictures to prove it) but still, man, SO OTT.
There she describes herself as a "Multiple Sclerosis Fighter", nothing about NMO.

No. 401019

>>401014

How can you be so uneducated? Don't you know Paige with all her 18 years and made-up conditions (some are real and she doesn't have them (MS/NMO), others are BS (leaky gut), yet others are super trivial, e.g. SIBO).

No. 401030

>>401016

Here's when she claimed both MS and NMO, which btw does not exist… either you're AQP4+ and thus have NMO, or you're not and thus have MS, or you're double positive (anti-MOG anti-AQP4+).

Pretty sure she doesn't know anyone with either of those conditions… or she'd know how devastating they can be.

She has a central line, so having picked up sepsis at some point doesn't mean a lot. With a Hickman, it's when and not if.

No. 401031

File: 1507576051651.png (205.71 KB, 749x1286, IMG_2396.PNG)

Oops forgot photo.

No. 401033

>>401016
Pics dude, this is an image board

Or at least post a link because no one wants to waste time hunting down this munchies FB

No. 401034

>>401016

Jesus, found her fb too. The way she's glommed on to nurses and two other kids with health issues, it just screams Munchie. A lot of Munchies do that - they get into hospital with a minor issue, and meet a few full time big league spoonies with their tubes and stuff… they become friends… and eventually they convince themselves they have the same symptoms. We see that to a lesser extent in adult care, but my girlfriend (works at a children's hospital) says it's quite frequent to have symptoms wander through the ward, with kids who have the right kind of damage (being neglected, ignored etc. - the Munchie starter pack) pretending to have the same.

No. 401038

>>401031
How tf is SIBO even a chronic illness? You treat it and it goes away?! Yeah it can come back but it’s essentially a bacterial infection in a way, yeah?

No. 401041

>>401005
In addition:
-Farrell bags aren’t used in people with ng tubes that are for feeding (like why would you suck out what you just put in?)
-they won’t work attached to an ng like that, which is obvious since the bag is empty
-anyone who actually needs stomach venting because of GP most likely won’t have any type of gtube, if you’re stomach is that fucked, a j tube is a better bet
-anyone can get sepsis, it’s not a special spoonie illness. You can get it from even a small cut.
-she just looks like a total moron

No. 401042

>>401038
Nope, not chronic. Chronic illnesses are ones that don’t have cures. But anything to add another hashtag kek

No. 401043

>>401038

People with slow gastric transit, especially if they're on PPIs as many are, are at a higher risk for a recurrent SIBO, but it's not a chronic illness. It always clears up with antibiotics. Always. If it doesn't, it's not SIBO.

At the same time, many people haven't had the proper test (jejunal aspirate showing a bacterial count exceeding 0.1G/ml). Maybe she got her SIBO diagnosis where she was 'diagnosed' with leaky gut….

No. 401045

>>401031

Lol for someone who claims to have liver disease, she's on TPN… liver disease is an absolute contraindication in most cases.

Also, she's got the straightest back of any scoliosis patient I've ever seen.

No. 401049

>>401031
So she’s claiming g and j tubes and TPN, but has an ng? Kek dumb munchie thinking no one’s going to notice. Here’s a hint: if your GP is severe enough to need extended tube feeding, they’ll give you a more permanent tube. A long term ng makes sense if a doctor is sick of their patient begging for one or if they just won’t eat for a non-physical reason, a competent doctor isn’t going to do surgery on someone who doesn’t need it. Who wants to guess when she’ll be jumping on the eds/pots train? Also, top kek on the champagne in the hot tube with a gastric bleed. It’s not advised to drink in a hot tub for anyone, and drinking in general is not good at all for GP. And if she does have a gastric bleed, drinking champagne would not feel good. But if she actually had one, it’s not a super huge deal, people get ulcers, especially if they’re taking handfuls of otc painkillers, as I’m sure she is, to make sure people know she’s sick.

No. 401050

>>401045
Bet that champagne goes real nice with TPN…

No. 401052

File: 1507578047188.png (113.24 KB, 640x757, IMG_3054.PNG)

i wonder what the other players would think if they realised there isn't much physically wrong with HMG

No. 401054

>>401049

On the other hand, if you have MS or NMO, a hot tub can bring on your symptoms pretty damn fast (Uhthoff's phenomenon). There goes another bullshit excuse of hers.

No. 401056

>>401050

And liver disease.

No. 401066

>>401019
Jesus I’ve had SIBO many times and a course of Xifaxin will fix you right up. Sage for rage at these ridiculous people hashtagging all this BS.

No. 401067

>>401043
That’s what I thought. I was tested after weird bouts of GI issues but I was told it was easily treatable (even with immune issues), so I was hella confused at why these people were claiming it as a chronic illnesss that never goes away…

No. 401071

>>401031
Cuz anyone with even mild gastric issues knows not to drink alcohol, JFC it’s like they try to insult our intelligence. Sage for rage

No. 401096

>>401049

Epic cow in the making Paige has now gone private. I guess it's only fun being a super spoonie warrior when no one questions your obviously made up illnesses.

No. 401097

>>401049

TBH looking at the pictures of her and her super tubie pals in the hospital, they all looked pretty fucking anorexic. I wonder if she's yet another SPOONIE WARRIOR hiding an ED under all the medical woes.

No. 401099

>>401052

God those pictures were so embarassing to look at. The other guys playing are obviously disabled, and he's just out in the chair his parents bought him for shits and giggles, calling himself an athlete (despite having grown to epic proportions through self-imposed immobility and terrible diet). He's an embarassment.

No. 401103

File: 1507583572440.png (84.05 KB, 942x214, Screen Shot 2017-10-09 at 22.0…)

While we're on the subject of Luke/hypermobileguy, this is something that's always struck me as odd. Lots of the "spoonie warriors" do mutual followbacks, for maximum asspats. Luke doesn't. He just seems to want attention without having to give it to others. I've never seen him comment on anyone's pictures.

Sage for speculation

No. 401107

>>401103
Check out who he follows; quite a collection of 'spoonies'

No. 401114

>>401103
Ha, the most narcissistic ones (can u say j a q u i e) don't follow back, I'm not surprised he doesn't.

No. 401116

File: 1507584558591.jpg (44.31 KB, 625x352, ab031d0f5129e90b892fb65e7c1c3c…)

>>401096

You can't stop the milk, Paige.

No. 401121

>>401107

Oh, yeah. Looking through his or Jaq's followers list is a surefire way of finding fresh milk!

No. 401124

File: 1507584966337.jpeg (176.13 KB, 750x744, DDBC01FC-F6DB-473D-A1F1-0AC2FE…)

tf are there even accounts like this?! Pros of wheelchairs. Pros of mental illnesses. Pros of chronic illnesses. I’m a part time wheelchair user and I don’t know why anyone would try to glamourize it… the only pro of having a wheelchair is that you can go out and fucking live your life more than you could without it. Like I get SOME of these accounts are made semi-ironically and others kind of try to promote positivity for the people who have no other choice but to mask their issues with forced positivity but ffs. kill me now, please.

No. 401126

>>401124

I'm a p/t wheelchair user too, and I see this as just good humour? Is this a submissions blog tho? That's a bit odd.

No. 401134

>>401126

A lot of the fucking comments are pretty cringeworthy. I've been there and back when it comes to health - pretty much been everything between wheelchair bound and elite athlete (rower/runner). If being in a freakin' wheelchair affects your life enough to set up a whole fucking blog about it, you've got issues :)

No. 401136

>>401126
Yea it’s a submissions blog / personal blog. With things like “I don’t want to see or been seen by able bodied people”. Idk. The way it’s presented just irks me and it’s not a humour blog, it’s just place for whining tbh

No. 401137

>>401124

What is it with a vast number of spoonies shaving their hair or cutting it very short or otherwise making themselves look like they're undergoing chemo (hi Jonzie!)? We get it, cancer kids are the archetypal sick people and you want to get some of our glamour… actually, no, we don't get it. What the fuck ARE you doing?

Ps. as time moves on, fewer and fewer chemo regimens make you lose your hair. There are now whole monotherapies for certain cancers that contain no cytotoxics at all, or contain large molecular cytotoxics that are less prone to induce hair loss, with monoclonal antibodies doing the heavy lifting.

No. 401138

>>401136

Great, more dumb Tiny Tim disability activism - the kind of disability activism that makes everyone think we're cunts, and rightly so.

No. 401139

File: 1507585929530.jpg (371.25 KB, 1080x1689, Screenshot_20171009-225055_01.…)

Oh wow.

No. 401140

>>401136

Oh, in that case it can get in the sea. If it was inviting things like "I don't fall over when drunk now!" (something a friend once said) then I might have been into it as a kind of approaching-adversity-with-humour thing.

No. 401141

>>401139
Just when I thought the spoonie madness couldn't get worse.. I guess you have to do something to compensate for the fact you don't have a service dog?

No. 401145

File: 1507586189819.jpg (428.76 KB, 1276x1369, Miranda.jpg)

>>401137

I posted this a while ago - it seems relevant to your question. It's the I LOOK SICK thing I guess. Even malabsorption doesn't make yoru hair fall out like this - and what medications do that aren't cancer drugs?? It's just more attention seeking I guess.

No. 401149

>>401139

KEK the tubie bear has a G tube and Luke can't get his doctors to give HIM one!

Remember when someone moaned about adults using donation things like Tubie Friends meant for kids, and the next thing Nicole posted was her fucking Tubie rabbit? Way to be a grown up, Nicole.

No. 401153

>>401139
Cringeworthy

No. 401157

>>401145
Kek none of those things make you lose your hair. It’s totally them trying to look like child cancer sufferers, who get attention and free shit. Surprise, bitches, no one cares about your whining. There’s a big difference between our cows and a bald three year old that could possibly die. They’re just too selfish to realize it.

No. 401158

>>401139
Ew ew ew get it away from me

No. 401159

>>401149
Am I a bad person if I think that'a really funny?

BTW, why is he on oxygen?

No. 401160

>>401157

Here's the kicker - IT'S OKAY TO JUST SHAVE YOUR HEAD FOR AESTHETIC REASONS. Some people look great with it. No need to pretend it's due to being so ill. I did it once before and I'd do it again but now I'm a wheelchair user I'd worry that people would jump to the wrong conclusions haha

Saged for blog-ish

No. 401161

>>401159

Oxygen…. well, he has asthma. But he's also claimed that his sats drop when he sleeps. Which is either bullshit and he's bought the tubing online, or he has sleep apnoea. My money's on the former.

No. 401162

>>401124
So does she use a wheelchair, or is this blog actually run by the wheelchair itself? But seriously, this is weird and definitely not normal. Yes, there are a few things that come along with chronic illness or disability that aren’t terrible (if you’re tube fed, no more cooking or washing dishes, for example), but they’re usually pretty overshadowed by the fact that actually it mostly all sucks.

No. 401163

>>401158
that innocent bear is being subjected to so much bullshit omg

No. 401164

>>401161

Oh, also he's been asked and clarified that it's a "compressor", he's not on bottled o2.

No. 401165

>>401161
If you have sleep apnea, don’t you use one of those machines with the mask, and not straight oxygen?

No. 401168

>>401165

CPAP, yes. But sleep apnoea was the only thing I could think of where one's oxygen saturation would legitimately drop while asleep only.

No. 401169

>>401160
Totally, but these munchies that do it only do it to purposely look more sick, like that gymnast that says she does it for mast cell disease but is out and about everywhere with apparently no issues

No. 401172

>>401168
I would think a cpap would be an easier and less expensive way to fix that, once your airway is open you should be getting enough oxygen.

No. 401173

>>401163
It's almost a type of MBP. Thankfully though, his 'victim' is not actually suffering.

No. 401174

>>401173
munchausen bear proxy?

No. 401175

>>401174

#saveoli

No. 401177

>>401172

It's a bit of a pointless debate, he doesn't need that shit.

No. 401190

>>401177
Kek true.

No. 401194

>>401034

Oh kek, ChronicallyP (Paige's) FB gets better.
I did some looking in her friends list and there are a few familiar names in there:
Chloe Leanne
Ruby Shallom (another "vaccine injured" one)
Amy (Chronically.ams)

She's collecting famous munchies too haha

No. 401195

>>401161

O2 for asthma is basically virtually never prescribed in the UK, especially given new treatments like Xolair. O2 is exclusively prescribed if and only if you have exhausted every possibility, including subq bricanyl pumps.

No. 401197

>>401194

Ruby Shallom is a fantastic munchie headcase. Been waiting for someone to write up her latest looney tunes.

No. 401198

>>401197

Alas I am not your anon for that. Maybe someone who's been following her a while?

If no one has, I could do a bit of cow investigation.

No. 401242

File: 1507595502605.png (187.24 KB, 750x1104, IMG_6711.PNG)

Claims she is doing the all liquid diet.
She is terrible at trying to go dairy free - has a dairy free milkshake but then has cream of chicken soup. She mentioned she bought a bunch of cream of type soups - cream is in the name - does she not realize that means it contains dairy.

No. 401254

>>401197

One of the things about Ruby is her younger sister had cancer, lymphoma if I remember correctly. I hesitated to bring that up due to her sister being so young, but I wonder if that could be a contributing factor.

No. 401260

>>401254

Close relative with serious illness can be a trigger point for munchie/attention seeking behaviour… of course, not always.

No. 401264

File: 1507597848363.jpg (1.49 MB, 3264x2448, IMG_1632.JPG)

Lulz, what's got up this one's butt?

No. 401286

File: 1507601053789.png (176.29 KB, 750x1334, IMG_7556.PNG)

Looks like she is angling for a tube! Says she couldn't eat the huge plate of Mac and cheese and has only ate saltines today. (Never mind an earlier pic of a piece of cake she ate and posted about.) She forgot also that is lactose intolerant.

No. 401287

>>401286

Who suggested she needed a feeding tube? I'll bet my right leg they have no medical degree…. and that they're also a massive munchie.

No. 401291

>>401287
The whole overall thing is bad. She said she has lost massive amounts of weight and is force feeding herself to gain 2-3 pounds a week to stay nourished. I am no dietician, but I don't think weight gaining is a sign of health in someone necessarily (aside from small children/babies.) Particularly when said person is very obese and has claimed joint issues already.

No. 401293

>>401291

To gain even two pounds of fat a week don't you have to be eating like 7000 EXTRA calories? One pound is 3500 calories.

No. 401294

>>401291

Wait, wait. She's obese but trying to gain weight to maintain said obesity? I'm not quite her size but when I'm sick I take it as a few bonus pounds lost, and just stay hydrated… she'll be claiming malnutrition next, amirite? kek

No. 401296

>>401116
>>401124
Had this been done sarcastically, if written well (idk I haven’t looked at it,) and executed well re: all the munchie toys and hashtags, it could have been (*note “could.”)

Hey are you guys actually telling me I have to create an insta to view these asshats? I vowed I wouldn’t for the longest time but I wanna see this stuff firsthand. You guys have got me hooked JFC! Sage for non contrib

No. 401297

>>401139
Of Ffs kek sage for just a certain je ne sais quoi

No. 401298

>>401159
No - well if you’re terrible then I’m just as guilty cuz I thought that comment was funny AF. Sage for solidarity kek

No. 401324

>>401296
Some of them you can view on Insta and Tumblr without having accounts.

No. 401328

>>401296

If someone's insta or Tumblr is private then you have to make an account and request to follow them. It can look suspicious if you're not posting about similar things.

No. 401333

File: 1507609384975.jpeg (186.69 KB, 750x1334, 7B315CD9-1C6F-4792-8EB8-F81A21…)


No. 401335

>>401333

This makes me happy. She's getting advice from others with illness who obviously have seen other younger people start to mimic what they see as "normal" behaviours for their conditions and want to make sure she doesn't go down the same path.

She could definitely use a diet overhaul though, if her dysautonomia is that bad.

No. 401336

File: 1507609748876.jpeg (334.93 KB, 750x1334, BB5F83DB-7232-49A1-8757-CFC61F…)

If it’s not a mental crisis with her, it’s some ridiculous overreaction to symptoms that happen with the things that she is proven to have (autoimmune disorders) in the form of acute illnesses – because it couldn’t actually be one of her 100 chronic illnesses “flaring”

No. 401340

File: 1507609961214.jpeg (Spoiler Image, 70.77 KB, 750x329, 74AEE5E2-86DC-443E-88B8-D242E1…)

>>401336
Oh but apparently she had a mental crisis earlier today that no one paid attention to so that’s probably why

No. 401349

>>401340

I read through her list of diagnoses and she's bullshitting so badly. The chances of having all of those, even just a few of those at once (say, EDS, Cystic Fibrosis and Rheumatoid Arthritis) together are astronomically slim.

No. 401353

>>401349
Exactly. We’ve mentioned that before which is why she became one of our milkiest cows. She has a bunch of unrelated unlikely disorders; she is also only a carrier for CF (which she changed to having pulmonary fibrosis), has never had genetic testing for her “vEDS”. She however does have proof of at least one autoimmune: Lupus. She is clearly very mentally ill with the amount of times she has attempted suicide (though many of them scream attention), but her BPD is very obvious as are some other potential mental health issues. There’s still some skepticism about a few of the ones she claims though (for instance, she shows very few signs of AvPD that would not already fall into her prior BPD dx). She just likes to add illness upon illness to her list, copy other well known actually sick people, and make it seem like she’s super “sever” (she can’t spell severe right for the life of her) and enjoys weekly trips to the mental hospital.

No. 401354

>>401353

Saged for blogging, but seeing a trainwreck like her makes me proud that I've pulled my life around before I hit 30. BPD is a tough thing to live with especially if you have a modicum of self-awareness so can see the chaos you cause. Her boyfriend needs to stop enabling her.

No. 401361

File: 1507612263658.png (480.77 KB, 600x718, Screen Shot 2017-10-10 at 05.4…)

Terrible trauma! SIX panic attacks!

>> Quick mom, take my picture for the internet or no one will ever know!

No. 401364

>>401242
This pic just screams Ana - it’s the quintessential “look at my thigh gap” pose JFC.

No. 401366

>>401324
Thank you to you and the anon below for explaining to grandma how insta works kek. Sage for non contrib

No. 401369

>>401349

Since she's so keen to overmedicalise everything about herself, it's odd she hasn't written about her acne problem.

No. 401372

>>401264
No one is competing with her. She isn't sick, so there is no competition. Kek . She just has to post something to make herself feel relevant or that someone cares. But no one cares .

By the way, I see her anaphylaxis reaction was so bad that she, again, is wearing makeup today. The was the most OTT blatant munchie lie I have ever seen. At least she could have rubbed her face a little or used all that make-up she has to make her lips look like they were swollen or eyes were puffy. Oh shoot…maybe I just gave her tips for next time she has a sooper special snowflake reaction.

No. 401375

>>401372

She seems to be blissfully unaware that she's also one of the overcompetitive OTT spoonies.

No. 401378

>>401375
I'm not so sure she is unaware! Everything about her is so calculated. I wish I could share some milk but it would out me. But let's just say she is seriously delusional

No. 401379

>>401369
Oh she has. She’s said it from the normal steroid that they give in autoimmune disorders (I’m blanking on the name); that’s also why she’s gained weight

No. 401380

>>401379
Pred? Fair enough, it can cause acne. But really, overdramatizing much?

No. 401398

>>401340
everything she posts about psychosis is a ridiculous crock of shit. she's certainly got some sophisticated, abstract command hallucinations going on. she acknowledges that the voices aren't real and are a symptom of her mental illness – since she evidently has strong insight, she shouldn't have a compulsion to indulge the "commands". if you know why it's happening, it's just a disturbing nuisance. if the voices were so painfully real to her that she's considering following their commands, then she's not functional enough right now to fill us in about her low grade fever and achy muscles (which apparently require a trip to urgent care first thing tomorrow morning.)

sorry to blogfag, but because munchies are consistently misrepresenting the nature of their factitious illnesses online for asspats and heart emojis, they're making stigma worse. they're poisoning "disability activism". i seriously hope that laypeople aren't putting too much stock in "friendly reminder that adurrduurrrdurr" tumblr posts and inspirational insta memes about how courageous, Chronically Infantile spoonies should be applauded for getting out of bed.

No. 401425

>>401379

Her level of obesity does not happen from the dosage of pred given for autoimmune disorders. Unless she got high dose pred, which is more common either short term to stop an exacerbation or longer term as part of chemotherapy, she would not gain this much weight unless she gorged herself on shitty carby food.

No. 401446

She is trying SO hard to be Jaqui and it's unbearable…so fucking sick of munchie vlogs with their dumbass "intros" like honestly who the fuck cares? It blows my mind they have so many 'loyal' followers.

No. 401447

>>401446

Also she has THREE fucking service dogs?!?

OTT much?

No. 401452

>>401364
She posts the "body check" ana photos all the time. I have noticed that her mirror is at an angle which is why her legs look longer/thinner.
She has a history of ana but I suspect that it is more a side effect of a bigger mental issue. I wish her therapist would start to work with her on finding the root of the issue so she would get out of the house and start to create a life for herself that doesn't revolve around illness.

No. 401456

>>401425
She gets high dose pred in cycles, I believe. Most of her weight was purge-only OSFED, but the combo of pred and ED did not do her favours.

No. 401458

>>401372
>>401378
She's 100% aware of what she's doing. When her sister had a really bad lupus flare she wrote that she's also sick and no one cares. What does she want? A mother who coddles her nonstop? Her mother kept driving littlemisswheeler to doctor's appointments and to the ER and it seems like it isn't enough coddling.

I don't know if the other anon noted the same thing: Every time certain people she follows have a flare, she also has a flare or a health crisis. And it often ends up with her going to the ER and she makes sure to post about it in her ig stories. Or she makes live videos while battling 10/10 pain.


Honestly? I'd like to know who the competitive spoonies are. Who is she jealous or afraid of?

No. 401481

>>401447
>Also she has THREE fucking service dogs?!?

Wait, the second and third aren't just pets?

No. 401485

>>401446

OH kek

>> now I have my feeding tube I can medically retire and make money by whining about my privileged life on YouTube all day. Yayyyyyyyyyyyyyy

No. 401495

>>401481

In her fucking "Intro" before all her vlogs it lists them and they all have some kind of "vest" or "Identification" on them

No. 401548

>>401361

Being a carrier for CF does not put you at risk for (I)PF, which is an entirely different disease that touches CF only at the physiology of the resultant damage, and even there it's pretty easily differentiable.

Jesus, how stupid do these munchie fucks think everyone else is?!

No. 401552

>>401458

> I don't know if the other anon noted the same thing: Every time certain people she follows have a flare, she also has a flare or a health crisis. And it often ends up with her going to the ER and she makes sure to post about it in her ig stories. Or she makes live videos while battling 10/10 pain.


That's insanely common with people w/BPD and Munchies in general, too. Partly, it's attention seeking ("why u pay attention to that other person?"), but it's probably the most heartrending feature of the disease. A friend used to be married to a Munchie who claimed to have a list of chronic conditions longer than one could imagine, while he had relatively severe (bag-for-life severe) Crohn's. So every time he got an exacerbation, suddenly she got sick the next day. She literally couldn't stand attention not being on her. This escalated to stupid heights when she would claim to be sick just when he needed her the most. Eventually, he realised she was making most of it up and dumped her, thank fuck. But it's horrific to behold what Munchies can sometimes do for attention…

No. 401554

Hey, what happened to that greeneggsandspoons whats her face girl? She was mentioned months back and deleted her insta… anyone got info?

No. 401555

>>401446

Cauchy is a great name for a dog… but beyond that, it's irredeemable bullcrap.

One, she has a fucking infantile voice that is just grating. Now, I don't exactly have the most grown-up voice myself, but this is the kind of infantile, cutesy voice that smacks of emotional immaturity.

Two, if I hear the words 'gastroparesis, that means paralysed stomach' once more, I will go on a fucking rampage. No, it really doesn't mean that. By definition, paralysis means a disruption between the CNS and the organ, whereas in this case, what's happening is that the CNS/ANS is just fine, it's the automyogenic system of the stomach (the stomach has a system similar to the heart: it has its own pacemaker that coordinates the ripple-like movements responsible for peristalsis and coordinates those with the two gates of the stomach: the cardia and the pylorus) run by the interstitial cells of Cajal that is fucked up. I know paralysis sounds much more serious, but that really isn't the case here (which is why e.g. quadriplegics - who suffer damage to the CNS - don't get GP, but uncontrolled diabetics - who suffer damage to peripheral nerves - do).

Three, the lead dietitian I work with, who happened to be my dietitian when I briefly enjoyed a feeding tube during chemo, encourages people with tubes to cook so that they don't completely lose their relationship to normal human food. So it's laudable that they cook, but… why is most of the food they're making so crap? It looks like the simplest meals, badly done. And I'm saying that as someone who isn't exactly a masterchef.

No. 401557

>>401554

She's around. New username is greeneggsnspoons.

No. 401560

>>401557
Thanks for the info
Sorry if I replied wrong I totally don't know how this works haha

No. 401561

File: 1507656209842.png (1.18 MB, 1240x794, paige_is_a_mendacious_asshole.…)

Today in 'context is everything': so, uh, Paige, are you feeling miserable with your gastric bleed, or relaxed with a glass of champagne?

The more I dig into this girl, the more appalled I am by her constant stream of ever-changing lies. She probably had some chronic health issues at some point, but she kept, and keeps, exaggerating them like the good Munchie she is. The likes explain it all: whining about a gastric bleed nets you more likes, after all, and what is life about if not Instagram spoonie popularity?

No. 401564

>>401555
I think it's because most people don't know the difference between paresis and paralysis.

Although tbh, I'm not sure gastroparesis is even an accurate name for delayed stomach emptying. I was dx'd with delayed emptying, and it took me a while before I understood that gastroparesis and what people called - translated into English - 'stomach paralysis' is the same thing. I had people say to me: "I know this woman, her stomach is actually paralyzed" and I thought "poor fck, that must be horrible! If a stomach that's just a little slower causes this*, how terrible it must be if it doesn't move at all!"

But yeah, it seems they all use "partially paralyzed". I blame Jaquie for that, though she was probably not the first to explain it like that.

No. 401565

>>401564

I had a French GI registrar who was massively scolded by the Trust lawyers after some munchie complained. Apparently, in French, GP is referred to as a 'lazy stomach', and that, of course, upset the darling spoonie warrior princess unicorn fighter queen zebra.

No. 401570

>>401561
Wow. Good detective work. But of course she is feeling absolutely terrible in this picture. Can't you tell? I always wait until I feel like I'm dying and then wip out my camera to take a selfie. Don't we all? Kodak had it all wrong with what they told us were moments worth of capturing on camera.

No. 401572

>>401565
That's hilarious. I'd seriously consider doing consultations in French from now on.

No. 401575

File: 1507657314984.png (406.74 KB, 506x661, more_paige_bullcrap.png)

Totally not fucked up when your entire circle of friends are the people you met on M2… at this point, I'm wondering

1) which of them actually has MS or NMO that Paige decided to borrow,
2) what she'll borrow next.

M2 is a medical ward at Sheffield Children's, so she'd be basically sharing a ward with metabolic, GI, respiratory (esp. CF), and just about anything not surgical. In places like this, it's not unheard of to have people with mild issues come in who end up 'borrowing' a few symptoms. It's like the Munchie equivalent of the old theory that jail is a school for criminals.

No. 401577

>>401565
I think it shows that the name you use to refer to a certain problem, actually matters. 'Lazy stomach' is imo a pretty accurate description, and it does not sound as devastating as 'gastroparesis'. Where I live, it's simply called "delayed stomach emptying. Gastroparesis is - maybe - used for the most severe cases (though I'm not sure about that). And guess what? I do not feel like I have an illness. Yes, there is a problem with how my stomach functions, and yes, it explains my symptoms. But in my mind, I do not have a chronic illness.

Saged for using semi-blog to make a point.

No. 401600

>>401577

Good point. Also, GP is really a spectrum illness. Somewhere at one end is dumping syndrome, then there's normal gastric transit, then there is delayed gastric transit and finally, gastric inertia. The problem, however, is that symptoms don't always neatly correlate to gastric emptying, in particular, GES is no predictor of severity of symptoms. I've always found that a weird little fact and sometimes I do wonder whether it is really the case that some people exaggerate their condition as soon as it has a name. A colleague told me about a patient who had asymptomatic slow gastric transit for years until she was told by a locum reviewing her test results from years back that she had severely decreased gastric emptying (and indeed, her GES was pretty far below normal). Suddenly, she started reporting GI symptoms: vomiting, nausea, constipation etc. To a great extent, how we think about our conditions determines how we experience them, and a lot of these Munchies are really just victims of the past generation of munchies who demanded that their conditions be taken 'seriously'. Now they are, and look what it's gotten us - 17-year-olds who instead of school, parties and dating are talking about what tube they're going to get next and how to get their doc to give them their next toy.

No. 401620

File: 1507662492408.jpeg (1.47 MB, 1242x1700, E442DAC8-D24C-4108-BBC3-341016…)

She says she’s not like chronically jaquie and that she can’t eat and tries to eat healthy but all her posts are shit food. Macaroni, ice cream, chips and cheese. And she posted a plate full of noodles and said “this is all I could eat” that’s a lot, especially for someone who apparently can’t keep anything down. She’s making herself sick.

No. 401628

File: 1507662982185.jpg (269.23 KB, 750x1334, IMG_1658.JPG)

ru_ana :surprised no-one's covered this munchie yet, although annoyingly she's deleted almost all of her main 'sickness' posts. Supposedly has cystic fibrosis and around 2 years ago became end stage, put on transplant list and apparently had '6 weeks to live'. Set up a go-fund-me for an oxygen concentrator, sorry but obviously the NHS would supply one if you needed oxygen. Oh and then suddenly went from dying to back to normal, no oxygen or wheelchair etc etc. Then suddenly has cancerous tumours in her spine - stage 4, shaves all her hair off in a live insta feed in preparation for chemo, and then her hair grows back normally.. Oh yes and before all of this, she did a shoot for the daily mirror with an 'oxyfit' oxygen tank - not medical oxygen but something you can buy off amazon.

No. 401650

File: 1507665375311.png (889.42 KB, 937x596, wtfvaugh.png)

This particular munchie is pretty fucking gross. Apparently her floor is littered with syringes, vials, and random lengths of tubing after a single day?

Her profile disclaims schizophrenia, as well as the standard grab bag of narcolepsy, EDS, and MCAD. What is it with this combination that seems to shout to the world they're out for pitybux?

No. 401654

>>401650
It’s because they’re pretty easy to fake but appear devastating (and can be depending on effect on actually having them) so munchies jump onto them. As someone with some of those, it pisses me off to no end.

No. 401657

>>401650
Also… FIND A FUCKING BAG OR SOMETHING? Who tf throws that much shit on the floor? Even on my worst days am I able to make it to a trash can or get a grocery bag to place my garbage in.

No. 401660

FYI

No. 401665

File: 1507666786442.jpeg (Spoiler Image, 696.39 KB, 750x969, EEF4A99B-DF4D-4B1E-8C69-823C6C…)

Guys bendywarrior wrote a suicide note to her boyfriend and posted it online before even acting on anything. Attention seeking much?

No. 401668

>>401665
She also never actually went to urgent care and just decided her symptoms were definitely strep without the test. Funny how she never mentioned those pesky white patches or yellowing of your tongue like you typically get with strep, but simply symptoms that could be attributed to her Lupus

No. 401671

>>401665

Her handwriting is infantile beyond belief. But… WHO does that to their boyfriend?! Who posts this, before killing themselves, online!?

No. 401672

>>401650

This is crappy hygiene. If you depend on IV medications, you cannot possibly afford having this kind of mess, you're literally inviting sepsis. Some people just shouldn't be trusted with home IV meds.

No. 401679

>>401665

This note looks like someone trying too hard to show they have have handwriting being degenerated by a mental disorder. Traditionally schizophrenia was remarked to have these characteristics but this girl is faking it.

I have epilepsy, and before attacks my handwriting will go south during auras. When you're writing during an impaired state, you don't pay attention to the lines of the page, and each individual letter isn't clearly legible.

All in all, her NPD/BPD/APD is making her a choice asshole.

No. 401680

>>401665
This shit is fucking infuriating. Someone who wants to kill themselves so desperately wouldn't risk getting stopped by posting it online before doing anything.

I also don't buy the whole "I'm going to use whatever available", if you've been seriously suicidal you most likely already know how you're going to do it

No. 401718

>>401620
These cows have no concept of what gastroparesis actually is. Try missing food so much that you eat just a couple crackers and then have them sit in your stomach in an acid slurry for hours until they decided to come up, and still feeling sick the next day. Not Mac and cheese and ice cream and chips.

No. 401719

>>401679

Why does a bpd diagnosis seem to give cows the okay to regularly threaten or attempt suicide? They claim they can’t help it, but there are plenty of people with bpd that doing that shit.

No. 401721

>>401650

Anyone with EDS knows to not leave things on the floor to trip over, and if that’s where she’s doing iv stuff, hello infection. Also, it’s just gross.

No. 401725

>>401650

“Sterile is just another word for more trash.” No, you moron, sterile is not getting sepsis and dying. Absolutely horrendous. Even with sterile conditions, there’s still a risk for infections. Why the fuck would you not even follow basic line care protocols? Also, why can photograph and IG all of that (with all the spoonie tags, of course), but can’t get it in the trash?

No. 401726

>>401650
I think some munchies like to feign psychotic illnesses to be extra special (bendy), but I wonder if it's an insurance policy for some of them, so if their bullshit gets called out they can always claim they were delusional/ill (win-win).

No. 401731

>>401679
Her handwriting is like this when she’s “lucid” (she claims it’s because of some disorder that is similar to dyslexia). She just has shite handwriting but it’s probably played up for show.

>>401726
Oh there are TONS of even actually mentally ill people (not even just munchies) that will find any symptom of their disorder to excuse shitty behaviour (it was something you saw a lot of in shelbi too if you paid attention to her posts on tumblr). Mental illnesses EXPLAIN behaviours, they don’t fucking excuse them.

No. 401733

>>401719
a lot of people with BPD are starting to leverage their toxic behavior with intellectualized defenses about how they really have little control over their reactions and are actually the most empathetic people alive (https://letsqueerthingsup.com/2017/08/15/your-bias-against-people-with-borderline-is-still-ableist/ – sidenote: this guy is a psych munchie i've been hate-reading for a while now but the milk comes slowly) so they see something like bendy's note as a cry for help from a source of great pain and desperation instead of a way to manipulate her boyfriend into paying attention to her and garnering "are you ok, love?? <3<3<3" asks in her inbox. even then they defend that behavior because she "hasn't learned any other way to cope". i'm sure behind the scenes this behavior is triggered by her boyfriend being nice to another girl or something. yes, bendy is clearly a low functioning BPD and i'm sure she's impulsively suicidal at times, but this note is top fucking kek.

No. 401735

>>401733
“At times” kek. Try literally every fucking moment someone isn’t paying attention to her or she doesn’t have some acute physical symptom to whine about. Have to agree with the “low-functioning” bit

No. 401738

File: 1507675148815.jpeg (114.22 KB, 750x424, 252B1059-F6CA-4BE2-88D0-ED5213…)

She should probably get a paper journal… having a public online journal screams attention. The nature of journaling is supposed to be private.

No. 401739

>>401735
i mean in the sense that at times she might actually want to kill herself even if she knows she won't. just giving her the benefit of the doubt bc she's obviously fucked. obviously most of the time she just goes through her normal i'll kill myself if you don't pay attention to me routine.

No. 401742

File: 1507676124793.png (136.28 KB, 1104x902, Screen Shot 2017-10-10 at 6.53…)

>>401738
the demons go away when she's a little achey.

No. 401777

File: 1507683282709.jpeg (159.22 KB, 750x717, F64A23CD-AAF4-4ED1-B8E7-C47528…)

>>401742
bendy is just one excuse after another. not finding a way to get to a hospital screams “I’m just saying this for attention”. If you’re seriously in a crisis, you wouldn’t wait to go to the hospital. She has full coverage of her medical shit so, hell, she could call an ambulance!

No. 401778

File: 1507683322191.jpeg (160.78 KB, 750x730, DE05639F-0B56-43CE-A25A-E9166A…)


No. 401788

>>401733

Oh joy, it's another queer wannabe theorist who uses 'folks' to mean people and thinks their Gender Studies degree and Cluster B PD dx will somehow make them qualified to discuss psychiatry.

No. 401794

File: 1507686369588.png (745.03 KB, 815x604, wtfkat.png)

Someone may have posted gorgeous_gatorade_princess pasta story earlier, but there's a few details in here that just do not jive with like. Any of the diagnoses she has.

Gastro and being well over 200? Judging by the girl's other posts, she clearly has an undiagnosed eating disorder. You don't get to being almost 300 lbs without some kind of unhealthy relationship with food. She's claimed she was raped when she was a little kid, which if true fits in pretty perfectly with how some rape victims try to make themselves physically unattractive as a response.

She's a fucking conundrum. I wouldn't doubt if she were lying about being raped, because of the fact she had no qualms about hanging out alone with a boy in her room for a while there, as well as her friends and family generally treating her as though she were normal if obnoxious.

Idk, I'm through playing armchair psychiatrist. So many of these munchies don't attend enough of their mental health appts, to try to really anchor that validation in for the the physical problems that don't exist. It's exhausting to see. It's like there's 10 munchies for every normal sick person.

Which there must be, especially for a lot of these rarer disorders. EDS as a genetic mutation is still relatively rare, but hypermobility isn't. Narcolepsy is rare, but we've seen a good handful of munchies hoarding that disorder.

And some of this is the fact that yeah even while resource hoarding, they're benefiting clinics and hospitals. The more patients seen, the more disorders diagnosed, the more can be billed. You have to wonder how many docs of these munchies care too much that they're clearly malingering. I've seen maybe three or four munchies outright declare they've had doctors call Munchausen on them, out of the several dozen we've discussed.

I see a lot of unhealthy behaviors exhibited when I go to the specialist I see. A lot of very overweight people, a lot of unnecessary mobility devices, a lot of attention seeking behavior from the more mentally challenged women, a lot of inter-reliance within this group. I see relatively few from the normal-looking, normal-behaving cross section of society.

No. 401797

>>401794
You can’t just force feed yourself with GP. And she’s eating way more than what she posts judging just by her photos. Plus, what she’s force-feeding herself aren’t GP friendly foods, yet she’s still considerably overweight. You don’t have narcolepsy and Eds just by claiming it, both have to be diagnosed by specialists, and she can barely get herself to pt and doesn’t have any paperwork to give her school. When you’re diagnosed with EDS at least, your doctor would give you that, although accommodations for EDS for school are usually only using a computer instead of hand writing things, and no contact sports or running in PE.

No. 401799

>>401788
he's awful. he was diagnosed bipolar 1 after having a BPD meltdown in front of his friends and playing it up at the hospital as psychosis. since he probably researches his factitious illnesses religiously, i'm sure he gave the "right" answers to questions about sleep, etc. eventually his dx changed to BPD (he literally mourned the loss of his bipolar label), which i have no doubt about. he also says he has OCPD, OCD, ADHD, alcoholism for about a week, complex PTSD, and probably one or two more.

his strategy of calling attention to himself is via syrupy novel-length blog posts masquerading as "disability activism", where he just repeats the same pointless truisms over and over again in various styles of prose. if you ctrl+f "folks" on his blog posts you'll get like 15-30 hits, btw. he started out writing dumbass listicles for everydayfeminism and decided he'd like to be the voice of everybody with a mental illness instead.

he's a pretty subdued, self-aware (sort of) munchie i guess.

No. 401803

>>401794
something about ggp that i don't understand is her visual impairment. does anyone know if she's ever been more specific about it? it seems legitimate but i guess it's too boring to milk?

No. 401806

File: 1507688040522.png (240.33 KB, 1136x850, Screen Shot 2017-10-10 at 10.0…)

>>401799
samefagging, sorry, but i just read his latest post and it's rich. it's like he finally had a moment of reflection/guilt about how his MI diagnoses (BPD aside) are fantasies of his, but instead of stepping away from the platform he appointed himself to, he turned that shit around in the most attention seeking way imaginable.

No. 401809

>>401803

I think it's called aniridia? One of the few legit things this girl has. Judging by her pictures, and comparing them to others, it's probably legit.

https://en.wikipedia.org/wiki/Aniridia

No. 401812

>>401809

The diagnosis of aniridia (absence of the iris for those who don't want to google it) does seem to fit based on her pictures. Although I haven't seen her explain how severe her vision loss is. I would expect she has some legitimate vision loss (I believe she met her friend who she has an unhealthy attachment to at a camp for people who are blind/have vision loss). Regardless she still plays that up to be more severe than it is. When she went to freshman orientation for the second time she complained that nobody would assist her to the auditorium. Seeing as she seems to have no problem navigating public transportation by herself in Boston, I would suspect that she should be able to find the auditorium in a school that she has already attended for a year.
I would guess that her vision loss is the reason that she has an IEP - but she is trying to get excessive accommodations for illnesses she seems to have self diagnosed.
She seems to play up a lot of her issues at school (she doesn't seem to have a lot of trouble when she is hanging out with her few friends) - she doesn't seem to have a lot of family support and I think she is trying to get that support at school but she does it in a way that pushes most people away.
And it makes her another munchie that spends more time chasing diagnoses for non-existent physical conditions than she does for the true underlying mental health issues

No. 401818

>>401812
I don’t know, you’d think she’d play up a rare diagnosis more, and also, if it affected her vision at all, she’d already have an iep with vision services provided by a teacher for the visually impaired. That would be set up in middle school and would automatically transfer to high school with all her accommodations

No. 401827

>>401794

She’s four years behind, so…should have graduated this year it sounds like. Just get your GED and be done.

No. 401828

>>401818
I think she does already have an IEP - IEPs are typically reviewed every year and students/parents can ask for a review earlier if they want.
The eye condition has probably been present since birth and I would suspect that she has had an IEP since she entered the school system. The vision loss isn't too difficult to document and since this has likely been an issue throughout her schooling the needed accommodations have already been established.
She likely requested an additional IEP meeting or went to the yearly review with a list of demands/accommodations she wants for her other "diagnoses" that she has no documentation to support.

No. 401831

File: 1507694294394.jpeg (306.58 KB, 745x1095, 9A8009B8-E2A8-4913-BCA0-9C4CE4…)


No. 401847

>>401831
I'm confused, since when do students have to pay to retake classes in public schools? Or even private schools?

No. 401851

>>401847
You don’t. Public education is free. It’s kind of a basic right in the us. And I don’t understand how someone can get 4 years behind and still stay in a normal high school, especially if she has an iep (it’s pretty much impossible to fail a kid with an iep)

No. 401854

>>401851
The only reason would be attendance, but if you miss enough school to be held back 4 times, you’d have already been dropped, unless you have some special arrangement, which we know she doesn’t have, since that’s what she’s been whining to get. Her story just doesn’t add up.

No. 401856

>>401831
Wait, so she’s got GP, but is going to the cookie store? And now she’s got cancer? If you’re going to be a munchie, consistency is the key. She’s obviously not aware of how ridiculous she sounds.

No. 401878

>>401856

Where does she claim cancer?

Also, I'm dubious about the aniridia. She seems to have intact irises.

No. 401881

>>401878
See her fuckton of tags. This bitch makes me rage so hard.

No. 401907

>>401809
Hm. According to Wikipedia, aniridia can - amongst others - be caused by WAGR syndrome.

>WAGR syndrome .. is a rare genetic syndrome in which affected children are predisposed to develop Wilms tumour (a tumour of the kidneys), Aniridia (absence of the coloured part of the eye, the iris), Genitourinary anomalies, and Retardation.[1]


>A subset of WAGR syndrome patients shows severe childhood obesity; the acronym WAGRO (O for obesity) has been used to describe this category.[3]


Another possible cause can be
>Gillespie syndrome, also called aniridia, cerebellar ataxia and mental deficiency.

Has she ever refered to her vision problems as being part of some sort of syndrome?

No. 401913

>>401851

I doubt the 4 years behind. I thought she was only 16 (someone had posted a picture of her birthyear on a hospital band but I can't find it). If she is 16 she is only 1-2 years behind. She keeps focusing on how she is now graduating in 2021 instead of 2020.
Its very possible that her parents waited an extra year to put her in school or that she repeated an extra grade.
She likely has an IEP for vision related accommodations only. She should be capable of being fully mainstreamed with maybe some extra help from a teacher for the visually impaired, enlarged print, etc (although based on her homework shots she doesn't even use large print text). Her missing school has nothing to do with her vision loss, which is why she was held back freshman year. If she was held back more than that I think it was probably at a very young age.

Also someone asked her if she tried a gluten free and/or dairy free diet. She said yes and that gluten free didn't go well (wouldn't if all you like to eat is cake and mac and cheese). She made it sound like the dairy free didn't work because she found out she was lactose intolerant. Um - then a dairy free diet might be what you need. For someone who claims lactose intolerance 97% of her food pictures involve dairy

No. 401916

Kinda irrelevant and weird, but that gatorade girl reminds me a lot of a 19 year old girl I once worked with. They look similar, tall and heavy set, and have similar mannerisms, the sleepy eyes, slow movements, sedated voice. They talk the exact same. Maybe it's the drugs they're on. The girl I worked with was raped so bad as a little kid she never 'grew past' that stage of her life, so was kinda like learning disabled, but through psychological trauma. It makes me feel like this girl could be a bit behind developmentally too but she types well and doesn't appear to go to a special school or anything. But I'm trying to remember if this patient I knew before was good at typing.. I know she spent a lot of time online.

Sorry for random blogging. But they're so alike. I wouldn't be surprised if her eye condition was part of an overarching syndrome.

No. 401917

>>401916
I agree something seems 'off' about her. I don't mean that in an negative way (well, not positive either) but more like she could have some sort of learning disability. If that's the case, should we discuss her here?

No. 401919

>>401628

Wow, munchie gold mine there!
I shall do more digging on this one.

No. 401923

>>401803

IANAD, but it looks to me like she has some degree of micropthalmia.

No. 401949

So I’m no medfag but I ran bendycripple’s medication list through an interactions checker and there were 28 major reactions, as well as like a gazillion moderate ones. I think most her physical symptoms are medication induced if real. Can a pro medfag confirm or deny said hypothesis?

Sage for non con/ Internet medfagging

No. 401954

>>401949
Anyone with the slightest pharma knowledge can tell that a ton of those meds have major interactions. No right doctor would put you on the combination unless there were no other options. My guess is she was prescribed each of them at different times and despite doctors telling her to stop one and start another, she decided to stay on both.

No. 401958

>>401954
she might have gotten them from different drs at different pharmacies. i used to work in the pharmacy department of an insurance co and we'd have to call pharmacies all the time cause whiny brats would get mad their drs didn't prescribe everything they wanted, so they'd try to get it somewhere else. pharmacies won't find out unless the drug is scheduled if we don't deny the presriptions.

sage for pharmacy shit.

No. 401969

>>401954
Wow, I just found her profile at http://bendycripple.tumblr.com/SpoonieConditions
Even just looking at her conditions, how is she even alive? O, that's right.

No. 401999

File: 1507735349757.jpg (115.17 KB, 1033x989, ooq6OmR.jpg)

She's claiming SLE, right? There is a picture of her ANA test on her Tumblr. She probably thinks the positive test (with a titre of 1:40) is proof of her claim. Well guess what, it's not. A titre of 1:40 is technically called a positive ANA test, but it is the lowest possible titre and it almost never means anyting. Normally, a titre of 1:80 or even 1:160 and anything below that, rules out a connective tissue disease. If it's 1:320 and there are other clinical signs of a connective tissue disease, the patient should be assessed further.

It is important to say that about 2% of patients with SLE will not have a positive ANA test. But that means that in the vast majority of cases, a barely positive ANA test (which 1:40 is) means that the patient does not have Lupus.

No. 402008

File: 1507735938195.png (3.2 MB, 1536x2048, mbv2.PNG)

Speaking of meds interactions, here's MyBlondeVoyage's newest medication plan. It's mostly supplements until the second page which includes prescription-only stuff and … well, no wonder she's fatigued.

No. 402009

File: 1507736011252.png (3.14 MB, 1536x2048, mbv3.PNG)

>>402008

Part 2. I do find it weird that some Instagram spoonies who have called out others are still lapping up MBV's shit despite her being treated at a centre that could find something wrong with anyone.

No. 402013

File: 1507736257810.jpeg (420.59 KB, 1270x1481, image.jpeg)

>>401907
She says it's a branch off ms

No. 402018

>>402013
Err.. I'm really curious what she means by that. Optic Neuritis is by some seen as a forme fruste of MS, but I don't think that's what she means. Aniridia is - as far as I know - either congenital or traumatic. Hers is most probably congenital. So unless she somehow has two eye conditions (which is statistically unlikely) it isn't linked to MS.

No. 402022

>>402018

Maybe she means that sometimes people with MS develop whatever condition that is?

No. 402039

>>401949

Happy to confirm there's no way a decent doctor would prescribe those together. More so, many are non synergistic equivalents, which leads me to suspect they're heavily doctor shopping. While none of the interactions are in the fatal realm, altogether they're bad enough that this little pocket pharmacy would never be prescribed to a single person.

No. 402040

>>401999
Do you mean autoimmune disease? Most CTDs are not assessed by ANA

And this is not testing for SLE; it says right on the test that it’s for RA. Learn to read (though I see you point regardless).

No. 402041

>>402022

They don't. Aniridia affects the iris, MS doesnt affect the eye but the optic nerve. Aniridia is almost always congenital and rarely, traumatic.

No. 402042

>>401999

A speckled 1:40 is almost always a leftover of a mild viral infection.

No. 402043

>>402009
Who's doing that? I think MBV gets a soft ride because she pays for everything instead of ebegging. That's much less annoying.

No. 402045

>>401949
i did this too recently actually because i couldn't believe any doctor would prescribe a zillion drugs that are seriously contraindicated with lithium. i think the doctors she sees seem pretty willing to bend to her whim though, so the list probably reflects medications she's been on the past. if you're the kind of person who has a Med List page on your personal blog, then it's unlikely you'd update the list when you go off something i guess.

i know she's low income and probably on medicaid, but i don't know enough about the bureaucratic and private interest side of things to understand whether or not overprescribing all this shit benefits her clinicians.

No. 402048

>>402040
>Do you mean autoimmune disease? Most CTDs are not assessed by ANA

They are. Not all of them, but SLE, Sclerodermia, Sjögren's disease, MCTD are all associated with a positive ANA test. And I did see that the testing paper said reumatoid artritis testing. But as RA actually has a much lower percentage of patients with positive ANA (only about 20-40%, whereas with SLE it's at least 98%) I assumed that she had posted that particular picture because she thinks it is proof of her Lupus claim. As I said, it is still possible she has Lupus. But a titre of 1:40 makes it actually less likely she has it instead of more.

No. 402049

>>402048
That’s because those CTDs are autoimmune…

No. 402059

>>402043

bettergraces, whose usually quick to point out bullshit

No. 402061

File: 1507739698438.png (212.54 KB, 1102x1234, Screen Shot 2017-10-11 at 12.2…)

>>399180
some anon has been blowing up her asks but it doesn't seem like she's ready to do an attention-delete yet. in fact it seems like she's publishing them so her followers will validate her.

anyway, her poor boyfriend probably thinks this is the only girl he'll ever get since he clearly has no self-esteem. apparently he has his own health issues but that doesn't stop her from insisting that he invest all of his physical and emotional energy indulging her histrionics. dude should apply for caregiver benefits, jfc.

and kek at "he's doing everything to keep me sage"

No. 402062

>>402013
I don't think she is claiming MS (yet). I think she more likely meant that she has an eye condition often seen in individuals with MS. I don't doubt her eye problems - her eyes don't look "normal" - although I think she exaggerates the severity.
It's a little sad that she went to the suicide walk alone and the "friend" she made is an adult woman. I swear she is screaming "mommy please love me".
I kind of feel bad for her since she is so young and definitely has a couple legit issues (vision, mental health, overweight) and doesn't seem to have a great support system. However I get the feeling that she is probably the kind of person who is almost insufferable to be around. I get the impressions she is very demanding and doesn't necessarily know how to use the word "please". I almost picture temper tantrums based on her "if they won't give me X, then I will do Y (go to school without rollator, refuse to eat lunch) to really show them" attitude.
She is still so young. With the right mentor she could probably get back on track.

No. 402072

>>402061
Seems like multiple anons tbh

She gets them all the time. Never deletes or changes username (nor does it appear that she ever actually blocks anons), but will switch anon on and off when she “just can’t handle it anymore”

No. 402074

>>402059
kek, I do follow her but mostly for her cats as she barely posts about her health. I scrolled through her pics from last year just now but can't find the one I'm thinking of so maybe she deleted it. Anyway she did post about maybe going to Breakspear a few times but then she complained about how they weren't answering her questions right or something, so I guess she dropped it. I remember her talking about them not having an evidence base so idk why she doesn't call it out now.

Sage for non contrib

No. 402075

>>402062
Sadly, this is exactly the same as what we saw/see in Shelbi and she’s what… 25? Hopefully she’s young enough to outgrow the need for cottling but we know that doesn’t happen…

No. 402096

>>402075
* by she I mean GGP

No. 402118

>>402075
GGP is still in high school (although held back a year or two). I believe she is 16 (age was confirmed when she was first mentioned here because she was very close to the lolcow-age minimum - I can't find that post right now). So she is still really young - young enough that she could really use a mother-like figure.
She seems to be screaming for adult attention which is why I think her issues are played up at school and she frequently seeks out doctors - she seems to be looking for someone who is supposed to be in a caring role to take her under their wing.
Unfortunately for her the way she seems to go about it likely irritates everyone around her.

No. 402120

>>402059
bettergraces is no better than any of the other spoonies and there's no sense in putting her on a pedestal for calling people out. she's always getting herself into shit that's not her business. sage for non contribution and me not liking her.

No. 402123

>>402048

Ehhh, idk. Rheumatology is weird. I had a mildly positive ANA, which prompted more specialized blood tests and showed I was highly positive for anti-RNP. Unfortunately that seemed to be the only objective factor my docs used in slapping me with the MCTD diagnosis. It seems rheums are more willing to give a positive diagnosis on a lower threshold, because the diseases develop gradually, and it's good financial gain for the rheums to have frequent follow ups to monitor someone at the borderline stage.

Maybe I'm just being cynical about the docs intentions, but a lot of the time, even in my experience, they're trying to keep patients in as long as possible. I'm working on getting undiagnosed and out of the system, but the doc would only say that I'm in good health and ordered a 4 mo follow up instead of cutting me loose. It's fucking mystifying, but with that kind of system in place, it really lets people latch onto these provisional diagnoses and milk them for all they're worth.

No. 402124

>>402118
Yeah, that’s what I mean. GGP is in high school so hopefully has time to grow but we still see it in people like shelbi who are in their 20s

No. 402141

>>401851
I knew a guy who graduated when he was 20 or 21 because he was an autismo supreme who would rather watch anime and pretend to be a super linux hacker than do work.

No. 402154

>>402120

Hoooooooooo boy.

A childhood friend of mine went to Cambridge with bettergraces and described her as hands down the worst person she has ever had the pleasure to meet. With a medieval studies doctorate and too much feminism/too little attractiveness to marry, bettergraces has earlynon adopted chronic illness as her meal ticket. She's not only an absolutely obnoxious person but also a Munchie to boot. She's an inveterate manipulator who got everything she could out of the university to have an easier time doing her DPhil, and when things didn't go her way, she's basically threatened her college that she'll claim discrimination. I've got way more stories about her but this should suffice. She's also not entirely devoid of woo and bullshit… IIRC she's also a Breakspear client.

No. 402173

>>402154
woooow. i thought i was the minority opinion. i really really don't like her nosy ass. she likes to argue and then backtrack when someone tells her she's wrong too. iirc she was also an ardent carmel supporter.

No. 402188

File: 1507753260591.png (250.5 KB, 1262x1141, IMG_0379.PNG)

Lol

No. 402189

File: 1507753300773.png (197.4 KB, 750x1062, IMG_2419.PNG)

Ain't life a party?

No. 402192

>>402189
Jesus the matching kiddie stickers on feeding tubes. This whole picture screams eating disorder treatment to me.

No. 402193

File: 1507753672403.png (116.65 KB, 1517x557, IMG_0381.PNG)

We are horrid people.

No. 402194

File: 1507753788392.png (301.45 KB, 1179x1284, IMG_0382.PNG)

Squalene was indeed used in the gulf war… as a vaccine adjuvant, which is how it's used everywhere else. It's safe, cheap and natural. In fact, your body produces squalene! It's part of the fat you deposit that forms a fingerprint. But this is Chloe, and not enough people have died from easily preventable illnesses that have vaccines…

No. 402195

File: 1507753862562.png (206.82 KB, 1198x1149, IMG_0380.PNG)

Excuse me, sir, can I interest you in a shot of aborted fetus?

Kill me now.

No. 402197

>>402195

(for those unfamiliar with it: these are cell lines, not cells. The cells are injected with a modified virus, and serve as a host for the virus to multiply. The virus is then injected, not the cells and least of all the DNA. By the way, you regularly eat DNA of animals of a different gender and you aren't turning trans just yet, are you.

I feel for Chloe but she's endangering people like me, who have to rely on herd immunity because they cannot form antibodies and thus cannot be vaccinated. I'd kill to have the kind of safety that she could easily have through vaccination. And of course she hasn't proved shit about how her mystery fake illness is caused by vaccines that are overwhelmingly safe…)

No. 402200

>>402197

Hell, a lot of women take in cells containing male DNA via their genitalia. Sometimes, that DNA joins with her own DNA and a male child grows within her over a period of months.

37% of women turn male after giving birth to a son.

No. 402202

You know, if Chloe's rants wouldn't scream 'I know jack shit about science', I'd be much more inclined to take her ludicrous claim of being vaccine damaged more seriously. Then again, this IS the girl who believes vaccines rewrote her DNA and gave her EDS… move over CRISPR!

No. 402203

>>402195
She has absolutely no knowledge of science or medicine. Also, she’s the one claiming she got a genetic disease from a vaccine, which is completely impossible. And no, they don’t harvest aborted babies to make vaccines. How dumb is this bitch?

No. 402204

>>402200
I’ve heard that. It totally happened to my cousin’s sister’s uncle’s wife’s best friend. Her name’s Kevin now.

No. 402208

Back in med school, I did some research on neurodegenerative disorders. Part of our stock in trade is inducing a condition called EAE, which is basically artificial MS: fragments of myelin and an adjuvant are administered until the poor mouse gets all brain damaged due to their own immune system mounting an attack against the anti-myelin vaccine.

Now, the typical adjuvant used is Freund's, which is a nasty fucker and is falling out of favour as it makes the animal suffer, and it can be very unhealthy if you accidentally stick yourself with it. So we've looked at better ways of giving mice MS, and tested squalene among others. Turns out squalene was not nasty enough, not by far, to make the mice turn their brains into cheese. More interestingly, the lab moron, son of a fairly well known clinical immunologist, stuck himself with enough squalene to shoot up a hundred mice (but no myelin extract). This was 15 years ago. He's still well, and all he had was some soreness and inflammation that subsided with some NSAIDs and topical cooling for staged release.

No. 402220

>>402204
37% seems a bit high though. I'd say it's more like 18%.

Ok, if they used aborted babies for vaccines.. somehow I think the pro-life movemens would be all over it. I think the percentage of vaccinated christians and other people that objected on ethical grounds would be a bit lower, too.

I have to say though, of all the vaccines out there, the HPV vaccine is the one I have the most doubts about regarding it's usefulness. But that still doesn't mean I believe people like her.

No. 402226

>>402220

Cell lines need either pluripotent stem cells (=> embryonal), induced pluripotent stem cells or tumor cells. For various reasons, tumor cell lines aren't used for vax. Yes, the cell lines did come from aborted foetuses… as in, 30 or so years ago, there was a biopsy of embryonal stem cells. Since then, tons and tons of the stuff has been bred and cultured, so that the original cells are probably long dead now. So in no meaningful way is embryonal tissue even USED for vaccine development, never mind that the cells have literally no other purpose than to serve as food for the virus to multiply in vitro and it's the viral antigen that's injected, not the cells.

Dumb Munchie fucks.

No. 402237

>>402173
I've DM'd with BG a few times and she definitely isn't a Carmel supporter. Not gonna id myself by saying everything we talked about but she doesn't go to Breakspear either, she's talked about it on her feed a few times. Not saying you have to like her or anything but imo she's not even ott let alone a munchie. She should get less involved in drama though, that's annoying.

Sage for boring

No. 402246

>>402197
I agree. I’m terrified not only for my safety as someone with immune dysfunction who relies on herd immunity but for anyone who also relies on this. The more fear-mongering that uninformed munchies create, the more deadly the conditions that actually ill people have become…

No. 402249

>>402189
im no medanon but it really grinds my gears when munchies bang on how incompetent doctors and staff are.

No. 402262

>>402249
I mean some docs are pretty dang incompetent (saw a neuro for neuro issues and all he was interested in were my knock knees), so I kind of see their point. But it definitely grinds my gears when there’s clearly nothing wrong, they say that about every doctor they see, and they only whine about incompetency because the doctors won’t give in to their games.

No. 402267

>>402246
Chloe Leanne has to be the single worst U.K. munchie since she's not only manipulative and greedy and ruining her own life and the lives of everyone around her, but also actively endangering people by spreading outright lies.

No. 402272

>>402249
Same. They’re only “incompetent” when they’re “actual” Drs who call them out on their BS and their little fee fees can’t take it so the Dr “must be incompetent.”

No. 402288

>>402272

Thing is, I've been at the receiving end of this attitude, and it can be truly abhorrent. Munchies are already pretty damn frustrating. It's like you're trying to solve a riddle that they keep changing every time you get close to a solution, but being what we are, we try to give them the best care possible. Even if we do suspect they're making shit up, we have to treat them with the utmost respect and professionalism - imagine having to treat people with all possible respect when you know they're trying to defraud you and possibly put you in a situation where you might lose your licence. I know most Munchies don't realize this, but they're playing with the careers and livelihoods of their doctors - and for what? A few cute Instagram shots of their new tube?

No. 402322

>>402288
Oh I’m completely aware (psychfag here) and although I’ve only dealt with a few munchies, I think it’s MUCH easier to be on the receiving end for me than it is for Dr’s like yourself who, like you said “once you come close to developing a Tx/ suddenly “X” symptom presents, and as you said, you can’t directly accuse a pt or you could risk losing you license. For me it’s like getting screwed and never being called again but for you they’re just bending you guys over and giving it to you hard. It must be maddening. Sage for psychfagging and empathizing.

No. 402341

>>402237
I’ve talked w/BG too and while we aren’t close, I don’t believe for a moment she goes to Breakspear.
She’s been nothing but kind to me and helped me through a rough patch, honestly.
That’s all I can say without outing myself.

No. 402353

File: 1507775374325.jpeg (168.17 KB, 750x558, D01E15AA-5C0D-4E88-B440-7BF5C8…)

This person is sticking up for bendycripple kek. Doesn’t seem like a munchie necessarily but definitely OTT and obviously has something wrong if she thinks allison is in the right.

No. 402366

>>402189

Well that looks like it's a whole buttload of unhealthy competitiveness, be it ED or who's-the-sickest?

No. 402368

>>402267

Exactly. Even if (and this is a HUGE FUCKING IF) she and others were actually made ill by the HPV vaccine, that doesn't mean that all other vaccines, which have been in use far longer, are dangerous. If a whole lot of young women don't get the HPV vaccine due to her, then that's really only their health it impacts on. If a whole lot of people decide not to get their kids vaccinated, that's another story altogether.

No. 402407

File: 1507791044834.jpg (272.12 KB, 1080x1234, IMG_20171012_084933.jpg)

It's official, the spoonie community has been taken over by munchies. These are the top photos on IG for the #spoonie tag.

No. 402421

>>402407
the faces of debilitating chronic illnesses

No. 402442

>>402407

Oh look, it's tomxmitchell on the right middle! He's a massive Munchie. He may have legit T1D, but everything else is made up. Especially his mysterious 'paralysis' of three out of four limbs (which alone does not tend to happen… paralysis usually affects 2 or 4 limbs, but with the exception of stroke, almost never 3: 3 limbs paralyzed is, unless proven otherwise, psychogenic).

No. 402443

File: 1507801851627.png (338.35 KB, 1269x1795, IMG_0383.PNG)

Vaccine injured AND Lyme disease. Maybe she needs to develop EDS and there's the trifecta.

No. 402444

File: 1507801907395.png (379.26 KB, 1260x1318, IMG_0384.PNG)

Vaccine essential oil MSbP klaxon!

No. 402445

>>402444

Oh look, it's another vaccine CRISPR! This one thinks vax gave her child MTHFR (I think she means MTHRF deficiency… we all have MTHFR!).

No. 402450

>>402443

Just googled NDPH. Sounds like a horrible, rare illness?! Nope, it's New Daily Persistent Headaches. Girl's got chronic headaches. But that wouldn't sound as dramatic I guess.

No. 402451

>>402450

NDPH isn't even a diagnosis or a disorder, it's used to differentiate between new onset persistent headaches (need to be checked out urgently) and old persistent headaches (don't).

No. 402452

File: 1507805522901.png (44.31 KB, 993x516, IMG_0385.PNG)

Except when she's faking a central line.

No. 402454

>>402442

Wow, the second male munchie we've had!

Does't Ruby Shallom claim she only has one functioning limb too?

No. 402458

>>402454
>Does't Ruby Shallom claim she only has one functioning limb too?

Vaccine injured Chloe (sorry, forgot her screenname) too. Seems like that's what people say now if they claim to be absolutely the sickest, almost dying, nonfunctioning person out there?

I mean, only one functioning limb is possible (rare, but possible) but having three limbs paralyzed and one not, is almost not physiologically possible. Very possible for conversion disorder, though.

No. 402470

>>402458

Indeed. The first descriptions of conversion disorder, by Freud himself no less, pertained to sensations of paralysis that made no sense with respect to the innervation of the hand (glove paralysis). Safe to say that 3 limbs out of 4 is very convenient - sounds severe, but doesn't limit you as much as quadriplegia would. Sadly, in reality, it does not happen…. ever, with the exception maybe of strokes.

No. 402474

>>402470

Yeah, I can see why these morons don't want to pretend to be quadriplegic. My husband is an incomplete C3 quad due to transverse myelitis, and it's horrible. Wouldn't wish it on my worst enemy. He's taking it in good cheer, but I know he'd give everything for a single fully functioning limb. Sadly, as his injury was quite some time ago and he still hasn't recovered more than the ability to wriggle two fingers a tiny bit (enough to guide his powerchair but not for much more), it looks like this is going to be his life forever. I can't stand people LARPing our misfortune.

Sage for blogging.

No. 402486

>>402368
>>402445
I wish these people would just say that it was something unique in the HPV vaccine that caused it… Like sure, it can affect an individual’s health if they don’t get it (even though there haven’t been extended studies on it), but telling people not to vaccinate hurts people that are truly sick and can’t get vaccines or can only get dead ones. We’re going to have outbreaks of things like mumps and smallpox again killing thousands of people (especially chronically ill people who rely on herd immunity or just can’t physically handle being sick). It’s terrifying.

No. 402490

>>402486

Except there's no more or less proof that the HPV vaccine is/was tainted than that other vaccines are. The HPV vaccine is a bog standard viral vaccine. It has the same adverse effects as any capsid protein vaccine.

The thing is, purely statistically, some people will have their chronic health issues start after the vaccination, and many interpret that as post hoc ergo propter hoc.

No. 402501

>>402490
That was not the point of the post – it was a side note that held little evidence scientifically but is what is believed by the majority of people who get vaccines that haven’t been around as it’s predecessors.

Regardless of safety / run of the mill vaccine status, cautioning people against something like the HPV vaccine affects – at worse – the individuals who do not get vaccinated. Cautioning people against most other vaccines depleats or eliminates herd immunity and can be detrimental to all of society, especially the young, weak, and actually ill.

No. 402502

>>402490
But I do agree with the fact that some illnesses will start after the vaccine and they believe the vaccine is the reason. Anyone with statistics knowledge (obviously not these people claiming vaccine injuries) will know correlation does not always equal causation

Thinking vaccines cause genetics to change like causing EDS or MTHFR deficiency is laughable.

No. 402523

>>402474

Jesus. I have no idea how you put up with watching Munchie assholes after that. I would've had a stroke by now :) Clearly you and your husband are a lot more patient/lenient than I would be.

Best wishes for however much recovery is possible for your man. This must be heartbreaking.

Sage for unusual empathy.

No. 402524

>>402501

That's a fair point, though Gardasil has been around longer than a vast number of medications, none of which are feared to the same degree. As one of those 'young, weak and actually ill' (at least 2 of those 3!), I find the primal selfishness of these people unbearable. But hey, what do I know, I'm just a big pharma shill :P

These folks definitely don't have a MoTHerFuckeR deficiency :P

No. 402558

>>402407

I think it's obvious that most of the popular spoonies are munchies. If they were actually as ill as they claim they are they wouldn't have the energy to be that active on social media

No. 402561

>>402558

What is more puzzling is how few of them actually decide to devote their energies to something productive, such as going to school or - God forbid - work or provide for their family. Instead, many of them see their chronic illness as a free ticket to spend their whole life doing nothing except talk about their chronic illness. This is sometimes acceptable, e.g. if you're having high intensity chemo, you may not be able to do much more with your life, but given how many accommodations are available to these people, it's unhealthy that their entire lives and identities revolve around how sick they are. Losing an identity is a traumatic experience, and many have spent the years normal humans spend building a self-image and a concept of who and what one is (teens to twenties) creating this identity that revolved around being sick. And they're convinced that only other sick people understand them, which is a) not true, b) not healthy. So what you get are people who with every passing day are more and more entrenched in an image of themselves as sick. I hate to say this, but I don't see much of a future for them. And they don't want one, either - because life is scary. In the real world, you can't expect everyone to treat you like a precious fragile hero. In the real world, you've got to do something before someone calls you a warrior or brave or stuff. In the real world, you've got to spend time and energy on figuring out who or what you are (it's far from easy). And who wants that? With this new trend of massive Munchieing (it was NOT this bad just ten years ago!) due to the growing patient power of chronically ill people, you've got a significant part of a generation who probably has convinced themselves, too, that they're sick. If you want to know what their life will be like, look at the older ones, such as Jaqui and HMGuy: a trite, boring life that they can only afford because their parents are paying for it. Eventually, you and I will pay for their malingering, which is going to be just great. Given how quickly the spoonie community disavows anyone who gets better (after all, their continued efforts are about convincing everyone that they're incurable!), the deck is stacked against any of them ever having a normal life.

No. 402578

>>402561
It’s not just attention from other sick people, it’s specifically from other spoonies, who are nearly all either ott or are munchies themselves. Most genuinely ill people don’t have any interest in getting involved with people who’s whole lives are hypedfocused on their illness.

No. 402582

File: 1507832322586.png (391.4 KB, 503x616, Screenshot 2017-10-12 20.18.11…)

>>402578

And the sweet, sweet pity bucks.

No. 402584

And the sweet, sweet publicity.

No. 402585

File: 1507832624078.png (245.23 KB, 468x625, Screenshot 2017-10-12 20.20.57…)

Ooops, forgot to attach the image.

No. 402586

>>402561

Ooof this hit me in the feels. After having constructed an identity heavily centered around being physically active and healthy, getting diagnosed with an autoimmune disorder more or less wrecked the possibility of that identity, which is why I've been working on getting it undiagnosed. If there's even a remote possibility that I don't have this disease, I would rather have the chance to be the person I've wanted to be for around 10 years.

And that's part of the problem with so many of these munchie cows. They aren't interested in contributing to society, and give a very thinly veiled self-servicing platform to talk all about them them them while arguing that they're raising awareness. When all the while, they're the ones increasing the stigma about being ill and being productive.

How many dipshits have we seen wandering around complaining about no spoons and not bathing and woe is them they can't work bc fake EDS/fibro/gastro/unicornitis. This isn't contributing to awareness, nor is it advocating for the chronically ill.

Anybody who is actually chronically ill, and not a self-centered asshole, would do anything to have the chance to do the things they love to do. I mean, there are self-centered assholes with chronic diseases, which are the OTT group, but if you're a relatively well adjusted person who wants to contribute to society, you're going to try to do something that isn't focused on a.) you or b.) your disease.

sage for blogging

No. 402587

File: 1507832775767.jpg (440.2 KB, 904x617, alltag.jpg)

She's nominated for an award called "Alltagshelden". It's not a big deal, but I think it's really sad that she's actually nominated for something like this.

"(…) is nominated for her open and remarkably honest way of writing about everyday life with rheumatism".
Honest? She's totally OTT and a munchie. She tries to advocate and at the same time she's also telling everyone that she's sickest kid around.

It seems like she gave up trying to get a diagnosis(GP and POTS). Now it's a mysterious heart condition, because her pulse was around 160 when she walked the dog. She stays in bed all day and keeps wondering why her heart is pissed off.

No. 402593

File: 1507833197885.png (135.59 KB, 701x625, wtfchloe.png)

>>402582

I like the clear eating disorder vibes she so radiates with these chipper in-bed selfies, while droning on about the hideous physical sequelae about her nonexistant vaccine injury.

Unfortunately, reading the comments on her FB are heartbreaking. There are so many moms commenting they won't be getting their girl vaccinated bc XYZ, mostly focused around how fucking terrifying Chloe's story would be, if it were actually true.

She has such a broad audience, and she uses it for such evil. Her narcissism is so disgusting. I hope she lives a good long life, and lives every hour with regret over her decision to frighten so many people away from medical vaccines.

No. 402594

File: 1507833702992.png (142.72 KB, 706x677, wtfchloe2.png)

>>402593

Chloe's another of the poor misfortunate hEDSers who are "terminal". Why. WHY do they keep doing this? She's transitioning from milking the vaccine injury to it being a narrative of… vaccine triggered EDS? Whu–? Also the standard MCAD/POTS/gastro.

Yes, please Chloe. Make it terminal. Pull a "Me Before You" scenario– you're only suffering, why not end it at a nice cozy euthanasia clinic? Clearly you'll never dance again, so please just fucking put everyone out of your misery.

No. 402601

>>402578
it seems that the spoonie community has mostly devolved into a contest to see who can appear the most convincingly ill and who can garner the most sympathetic followers. given that a lot of them are clearly eating disordered (the spoopy spoonies), it's not surprising that their internet community would become a sick girl olympics (or WWF, since they know know everyone else is also full of shit.)

obviously some of the more eloquent attention-saturated munchies get tons of real asspats from gullible people, but that's like #spooniegoals and the competition is the ladder.

though on the other hand, there are people like dani and bendycripple who don't seem to have enough wits to play with the big dogs since they're frankly below average intelligence. also, i think they're more low-functioning borderlines, so they aren't able to fish for attention in a calculated way, instead they act out impulsively and demand attention. OT, but i wish robin would come back, since she's the perfect balance between the two types.

No. 402606

File: 1507836678163.png (44.69 KB, 1100x404, Screen Shot 2017-10-12 at 3.21…)

Listing TMJ first, kek.

Anyway, her bf has PTSD, depression and anxiety and yet she proudly boasts about how much he takes care of her during her daily string of outrageous crises. Her self-victimization runs so deep that she feels absolutely zero shame about emotionally abusing a vulnerable person.

No. 402613

File: 1507837120375.png (1.23 MB, 750x1334, IMG_2422.PNG)

Look who's shopping for new symptoms…

No. 402614

File: 1507837225622.png (1.65 MB, 750x1334, IMG_2423.PNG)

Yeah, that's not very likely, but please keep disrespecting the people keeping you alive.

Ps. looking at the tube without seeing the stoma site, I'd have guessed SPC too. That's because it's gunky as fuck. Jesus.

No. 402616

>>402594
Her EDS description is right off an internet list of symptoms, and doesn’t sound anything like an actual Eds case (the vast majority of EDS patients rarely have full dislocations; daily subluxations, yes, but not full ones). Not to mention that you’re born with EDS, you cannot get it from any other means. And lung problems are nota generally recognized symptom of Eds, especially in hEDS (they can happen rarely in a few of the other types). I’m pretty sure she just read a list of symptoms and wrote them all down, since most people have different mixes of symptoms, while she’s given herself all of them.

No. 402618

>>402593

That makes no sense. Did she die from organ failure or from her ANS being wrecked (which doesn't usually kill people)? Also, screw your whining, I've been in asystole multiple times and no, it's not the same thing as whining.

I hope Chloe enjoys being responsible for dozens of dead and maimed kids whose parents read her sympathy grabbing lies and didn't vaccinate.

No. 402619

>>402613
“Someone tell what the symptoms are so I can fake them”. Munchies are terrible people.

No. 402620

>>402616

Yes. In the context of FII this is often referred to as a caricature of an illness.

No. 402622

>>402618
EDS and pots don’t kill people (except veds, which she obviously does not have). Mcas technically can, if you’re someone who gets typical anaphylaxis, but not everyone with mcas gets that. And GP can as well, if you’re not treating it and just letting yourself starve, or if no treatments are working, but just by looking at her stomach, she’s not even close to dying.

No. 402623

So I was horrified to discover this site. How sad must you be to sit and scrutinise people who are chronically sick? If you’re genuinely ill then you should focus on your own life and health, not others. Grow up.(USER HAS BEEN PUT OUT TO PASTURE)

No. 402624

>>402618
Shit, you can die from cancer caused by hpv as an adult if you didn’t get those vaccines as a kid. That’s why vaccines are created, to keep people from dying from easily preventable diseases.

No. 402625

>>402619

A good friend has MCAS. The real deal. I helped her get diagnosed via a bone marrow biopsy, not just slap the label on after two itches. It ruined her life, led to her asshole husband leaving her, she lost her career and she barely got by with support from us until she finally got a little better. Care to have those symptoms, Paige? Oh wait, you can't… you're already a full time spoonie.

No. 402626

>>402623

Ok, Charlotte Harris. Perhaps you might want to consider why people here are upset about what these people do. I suggest you start by reading the messages by the girl married to a quadriplegic. Then go straight up.

Judgmental asshat.

No. 402627

>>402614
Does she have three tubes? What's the button on the right, just above the PJ bottoms?

And yeah, that does look like an SPC if you're only looking at the tube. But no, a doctor would not have thought that your bladder was up in your stomach. I get that there are doctors out there who don't know their bum from their elbow in a figurative way, but if you're being literal: that just doesn't happen.

Also: why not clean yourself up a bit? And don't say your skin is too sensitive to clean the tape goo off, because a little vegetable oil on a cotton ball does the trick quite nicely.

No. 402628

>>402625
Not to mention the blistering, bleeding, oozing rashes, the breathing problems, the gi problems, and all that fun stuff. Actually having mcas and any of the other munchie’s favorite diseases suck, especially since most people who are sick have to still be responsible adults because no one’s going to take care of them and give them money to lay around and be lazy and whiny. Surviving on disability on works if you have others helping you, and not everyone is that lucky

No. 402629

>>402626
Definitely. But report spam by using spam-chan.

No. 402630

>>402627
Yeah, adhesive reactions are common in people who have EDS and mcas…. not to mention it looks gross, and seriously, how lazy is she? She doesn’t have pots, she’s severely deconditioned from laying in bed 24/7. It’s like that experiment NASA did, they paid people to lay in bed for a long time, and it fucked those people’s orthostatic blood pressures

No. 402631

>>402614
Her g tube is absolutely disgusting. You can tell by the color(s) she’s been purging out of it.

No. 402633

>>402627

From top to bottom: G, J, C-tube. A coecostomy tube is used for a lot of things, mainly for people with chronic constipation to lavage the coecum with some miralax or water and soften up the poop.

No. 402634

>>402614
And if she feeds herself through the j-port, why does she have an extension attached with nothing going through it? The whole point of a button tube is that the extension can come off when it’s not being used. Kind of looks like she’s not using her set-up correctly, maybe like she doesn’t actually need it??

No. 402636

>>402627

From top to bottom: G, J, C-tube. A coecostomy tube is used for a lot of things, mainly for people with chronic constipation to lavage the coecum with some miralax or water and soften up the poop.

No. 402638

>>402633
I have never heard of a c-tube before. Pretty sure it’s not a common practice. You can put all those things in a j-tube and they’ll go to the same place. But that’s how munchies rate themselves, by the number of extra holes they can get punched in their bodies.

No. 402642

>>402636
I thought c-tubes were mostly for people who have spina bifida or similar conditions that cause bowel problems?

No. 402648

>>402636
Ah, caecostomy. That was the only thing I could think of, but I wasn't sure. Many surgeons would rather not use a button for it, at least from what I heard. Might be different in the US though.

No. 402649

>>402642
Can be used for other causes, too. Basically everything you could use rectal irrigation for, so both obstipation and fecal incontinence with a wide range of causes. MS, SCI, idiopathic obstipation, anal atresia, etc.

No. 402659

>>402648
I haven’t heard of anyone here in the us getting one , though I’m not a doctor. For severe chronic constipation, people tend to either do enemas and medication, or have their colons removed and have to have colostomy bags.

No. 402663

>>402594

I'm sorry, given that this idiot believes that vaccines contain DNA from other humans (lol no), why is ANYONE taking her seriously, and why isn't she universally encountered with the scorn one should reserve for this level of scientific ignorance?

No. 402665

>>402659

Yes, c-tubes are last ditch attempts before an ileostomy as they're still more easily reversible than an ileostomy. They're not frequent but if the patient's main issue is neurogenic constipation and their intestines are otherwise healthy, we sometimes prefer to try that.

No. 402669

>>402659
A caecostomy or MACE procedure would be the last option before going for an ileostomy. They tend to be done either because someone is already irrigating rectally and are having a hard time doing it because they can't reach behind or the balloon or conus is causing rectal problems. The second possibility would be that anal irrigation is not as effective as one would like. The idea is that antegrade irrigation would be more effective than doing it rectally.

In most cases though, I think rectal irrigation works fine and there's no need to have a hole poked in your belly. But that's just me. If it would make irrigation a faster process or would cause less vagal reaction, it'd be another thing. But as far as I know, the process remains the same. Hence why it is indeed not a common procedure. For a small group of patients though, it can greatly improve their quality of life.

No. 402670

>>402665
Oops, I typed too slow. O well.

No. 402702

>>402669

Knowing how rare they are in the NHS, especially for someone without a clear neurological disorder (no, sorry, fake MS and/or NMO does not count…), I think Paige has been whining until she finally got more tubes than her buddies. Because who would want an ostomy…

No. 402708

Soooo… the plot thickens.

Q: What's the best predictor of FII?
A: A close friend or relative going through serious illness while you are in your formative years.

It turns out that Ruby Shallom, another 'vaccine injured' (JFC!) young lady, has several photos with a younger female relative (won't post them as she's under the cow age limit and is legitimately sick, unlike Ruby) who is quite evidently undergoing chemotherapy and has an NG tube.

A few months later, Ruby gets her very own chronic health issue, with the completely insane '3 limbs out of 4' paralysis, which just does. not. happen.

Interesting, huh?

No. 402743

I’m the judgemental one? I’m not the one sat analysing other peoples lives. I’ve really begun to dislike the chronic illness community and it’s very sad. We should be supporting each other 😞

No. 402775

>>402743

Maybe think about why you have begun to dislike the chronic illness community?

One, you're not entitled to anyone's support. Least of all are you entitled to everyone's support.

Two, as you might realise if you had spent more than five cursory seconds reading this site, just about everyone in this thread is chronically ill, a caregiver, a doctor or a combination of these. You could pick someone randomly and the likelihood of them having real world experience with chronic illness that far exceeds what these pathetic Instagram Munchies are pretending most of the time.

So yeah… you're judgmental. All of us are affected in some way. We care for people and our time is stolen by people who compete in how many tubes they can cheat out of a gastro consultant while blocking precious beds. We have health issues and have to deal in addition with the prejudice that comes from a public ill-informed by Munchies and their caricaturesque version of illness. We live with sick people and have to watch them suffer while people claim their conditions and treat life as a never-ending holiday courtesy of the Spoonie Card.

Trust me, nobody here is getting any joy out of these people, and if they disappeared from one day to another and never came back, that'd be fantastic. We'd much rather live in a world where our lives aren't marred by silly young people pretending serious illnesses to get that sweet, sweet support and affection that they're too lazy to otherwise get.

If you want support, work for it. Prove you're worth supporting, and that includes more than posting every dumb EDS meme on your Facebook (please… the whiny quote by Grahame about how no condition has been mistreated and underestimated is exactly why Grahame isn't taken seriously anymore).

No. 402779

>>402775
Most of this is true but there are some painfully obvious vendettas going on too.

No. 402782

File: 1507855767695.png (338.01 KB, 559x603, Screenshot 2017-10-13 02.43.37…)

More wheezes from the Land Where Vaccines Alter Your DNA: because she couldn't get it prescribed on the NHS (because WHY?!), Chloe e-begged for IVIG. But… it might not work, because her immunoglobulins are too damaged.

Say WHAT?! I mean, ok, she thinks vaccines contain human DNA, so she's already several cups short of a tea service, but… the point of IVIG is to replace immunoglobulins, even where basically none are present. Also, given that immunoglobulins are proteins, they're not 'alive' and thus can't be 'dead'. Gah. Fucking hell.

But, it gets better… she is, among others, raising cash to get tested for ADEM. Err… I had ADEM, at age 19. I can tell you with absolute confidence that you don't have ADEM and not realise it. It causes rapid as fuck neurological decline that's basically like getting late stage MS in an afternoon. It is unmistakable, and untreated, it tends to be fatal or at least leave you pretty battered. But hey… what do I know, I'm just a horrible person, whereas she keeps copy/pasting every serious-sounding medical acronym on her diagnosis list. And like every crook, she thinks deep down it's all heavy metals.

I would be much, much more lenient if she wouldn't frighten and dissuade parents from vaccinating their kids. And for what? The money she gets from gofundmes? The affection? The lifelong free ride? What IS worth endangering another human life? I truly want to know.

No. 402784

>>402779

What, here?

I don't know, who do you think do people here have a vendetta against who did not do something horrifically obnoxious herself?

No. 402787

>>402784
The German woman is one example - like no one is really that interested and it's clear she annoys that one poster who keeps putting her stuff here. She's ott but not really milky, she's never been majorly obnoxious like real lolcows.

No. 402806

>>402782
Also ivig doesn’t necessarily help pots, and it definitely does nothing for EDS and GP. And a stem cell transplant?? That helps literally nothing she claims to have, plus it’s not an easy thing to get.

No. 402807

>>402782
It sounds like she thinks immunoglobulin are tiny living creatures in her body ….not how it works. Further confirmation that she’s a moron.

No. 402821

>>402779
No vendettas, just laughing at people who are way over the top or obviously faking yet are putting themselves very much out in the public eye just for attention. Fair game, in everyone’s opinion. Sounds like we’ve got a butthurt munchie on here kek

No. 402824

>>402806
Ivig only is used for acute idiopathic dysautonomia, which is different from pots caused or concurrent with Eds.

No. 402828

>>402782

One of the things that strikes me about this picture is how much strength and posture she has. She's able to keep that contorted posture to look down at an awkward spot on her body. The way she has enough strength in her neck and shoulders to lift and hold her arms and head.

That is not the body language or posture of someone with severe muscle weakness. Or even joint weakness. wtfe why can't these munchies see how ridiculous they look, when they look so healthy?

No. 402844

>>402782
>>aka I’m too sick
Top kek. Too sick for a treatment used in people with literally no immune system.

No. 402850

File: 1507863908598.jpeg (104.53 KB, 750x374, CF4D5E9C-0EBB-4EC9-807A-795107…)

bendy gave EVERY excuse not to go to the closest hospital in her “crisis” (and couldn’t afford to go to the “good” one but could get Starbucks and go to multiple different stores), cuddled up with her boyfriend and focused on her “strep”, and apparently was fine today so she didn’t go to the hospital like she said she was going to… ie probably posted about wanting to kill herself for attention and then was fine when her bf gave her some? I don’t know about other anons, but if I was a) experiencing psychosis or b) on the verge of killing myself I would go to the fucking hospital ASAP or at least suffer in silence (or maybe tell someone that could help me not post about it on the damn internet).

She’s never going to try for a job, but if she ever decided that she wanted to turn her life around, a blog like this would destroy her chances…

No. 402868

>>402821
Easy to say, but no. I'm a regular poster about actual munchies like Jaq and CL. Vendetta posting is a real issue just like self posting, and it's stupid to pretend it's not. It's discouraged on here and KF because it clogs up the discussions with personal grudges.

And that's about 100% more of an explanation than you deserve if you can't think past "reeeee munchie" anytime someone criticizes the boards.

No. 402872

>>402868
Seconded that I think there is quite a bit of vendetta posting that happens here but sometimes people truly think that the people they dislike are munchies regardless of their dislike. Also agree that the thought that anyone who criticizes the board is a munchie is laughable – “you disagree with my speculation therefore you’re a munchie too”. Kek.

saged for stupidity and samefagging

No. 402878

>>402872
Judging on past interactions here, the people who get the angriest and most accusatory are themselves either munchies, their friends, or ott spoonies. So it’s a statement based in observation, sorry you don’t like that. Also, plenty of people are brought up once, but are determined to not be munchies or way over the top, and they’re not talked anymore any further. And if someone hates the site so much, don’t read it.

No. 402901

>>402828

Yes! Also, someone paralyzed in one of their arms couldn't possibly keep that pose. Look at her hands!

No. 402906

>>402561

You are so right about the communities not being like this 10 years ago! I have been since since I was 11 but didn't join any online communities (Oh AOL) until I was 15. Everything was so supportive and I didn't even know MBI was a thing until a few years ago. God what I'd give to pass off my symptoms to one if these munchies for a week!!

Sage for no real contribution

No. 402910

>>402901
And the core strength necessary to hold your head up like that. She’s not teetering on the edge of death as she claims kek

No. 402915

>>402901
>>402910
I was wondering about this. She seems to have great strength in her neck and shoulders, something that would not exist with paralysis or muscle weakness as she claims (muscle weakness in the arm tends to include the shoulder and some neck muscles), and would not be guaranteed if she actually “developed EDS” (regardless it’d probably be hella uncomfortable with anyone with slight cervical instability). It struck me as very odd when I saw it (“huh this girl my actually be a little ill” → “how dumb does this girl think people are” / “how dumb are people to believe this?”). Her movie appearance made it seem [now obvious for attention] that she had zero strength and here she appears to be using neck muscles and BOTH arms.

No. 402918

File: 1507877822354.jpeg (378.29 KB, 1936x1936, 28B7F67C-4CEB-40C0-B745-83F973…)

bendycripple answers an ask about how she says she’s not going to the “good hospital” now because she and her bf are trying to keep her safe at home (this obviously has not worked multiple times in the past) and how $35 Uber fare is too expensive (but they went to Walmart yesterday and went to some drug store with Uber / got Starbucks the other day?). Then the next post is her talking about how she is suicidal. Excuse after excuse about why she wouldn’t get help. I know it’s not ideal for low-functioning BPD people to always have to be hospitalized but either deal with it by talking to a therapist / outpatient team / going to a psych inpatient or stfu and keep that crap off the internet; it’s so freaking attention seeking if you’re posting “I’m going to kill myself” “I’m going to overdose” “I’m suicidal” every 5 seconds online and you look like the Munchie Who Cried Suicide™ /end rant/

No. 402921

File: 1507878353555.png (1.62 MB, 750x1334, 1341C885-AEBE-47FD-B537-AA8E83…)

I’m honestly filled with rage because of this girl. HER GES WAS NORMAL. Her GI diagnosed her because she could only eat half the sandwich and because of her other symptoms? That’s ridiculous.
Oh, and of course she didn’t go to school because the tests the day before wore her out. Of course.
I was a high school dropout in grade 9 and (luckily) got my GED. I regret dropping out everyday but I just want to yell at this girl to drop out and take the GED.
Is it too hateful of me to say that I doubt she’d be able to pass the GED though? Kek

No. 402922

File: 1507878521569.png (2.49 MB, 750x1334, 0D0D0923-CCC3-418E-A315-FB4624…)


No. 402935

>>402921
>I’m honestly filled with rage because of this girl. HER GES WAS NORMAL. Her GI diagnosed her because she could only eat half the sandwich and because of her other symptoms?

Say what? Yeah, let's just diagnose people based on their symptoms alone. Because there is no such thing as functional dyspepsia, somatization, factitious disorder, malingering or even, I don't know, other medical problems that can cause early satiety, nausea and vomiting?

You know, next time I'm tired I'll ask my GP to diagnose me with iron deficiency anemia, even if my hemoglobin and ferritine levels are great. And if I've got a headache that increases with straining or sneezing, that must be a brain tumour, even if my MRI is completely normal, right? 'Cause there's absolutely not other explanation for those symptoms, and they can never be transient, stress-related and completely benign.

Where do all those people find these kind of doctors?

No. 402941

File: 1507892169602.png (190.28 KB, 746x1200, IMG_2425.PNG)

Perhaps if we stopped giving Munchies 'Child of Courage' and 'Pride of Britain' awards, it would be less of an eligible lifestyle choice and we could actually focus on no outing and treating those who really need it.

No. 402944

>>402935

Places like Breakspear.

No. 402945

>>402944
You mean this place, where apparently they do detoxification and treat electrical sensitivity?
https://breakspearmedical.com/ That's just great.

No. 402948

>>402921

Haven't watched the video, but I'm guessing she's jumping the gun. At the end of her previous video, she outright states that her results won't be in for another three days at earliest. It's possible she filmed the video (gastric emptying scan) around Monday and didn't post it til now, but I'm guessing she hasn't had official word and is making shit up.

No. 402954

>>402948

Agreed. She said a nurse called to tell her the diagnosis over the phone. That does NOT happen. They won't even give you freaking lab results over the phone. Though she did say they were prescribing erythromycin which is used to treat GP…but I guess she could of easily copied that off someone else on IG or other social media.

No. 402958


No. 402959

>>402958

That is specifically for ADMINSITRATIVE issues, such as remind them of an appointment or meds. They can't divulge a dx.

No. 402961

>>402959
LOL MAD COW. WATCH OUT EVERYONE.

No. 402962

>>402959
Unless it was an NP? I watched the first half of the video (somehow missed the fact that she said a nurse called her?) but she did say she got the results much faster than she had expected. And the fact that she's starting erythro seems to suggest she spoke with either a doctor or someone who called on behalf of the doctor.

No. 402967

>>402962

I haven't watched the video. But it would be unusual for someone to call to discuss a diagnosis, particularly a new diagnosis, over the phone.
I can see them calling her and giving her the results if they were normal. But abnormal results/diagnosis usually warrant an actual visit (that can be documented, billed, etc…).

No. 402974

>>402961

Different anon, and far from mad. HIPAA is not always easy to understand and some nuances are fine, e.g. what qualifies as an adminsitrative and what as a clinical call.

No. 402978

>>402974
Yeah. I must be some unique snowflake, because after appointments and tests, my team tells me to look at my dx and results of my online emr.

If I have any questions, send them a message or give them a call. I don't have to actually go in and see someone unless I'm showing physical symptoms or need blood drawn. We do everything over EPIC patient portals and phone calls.

No. 402986

>>402954
My nurse called to tell me that my GES was normal (thank fuck!) but obviously couldn’t say I didn’t have something wrong or did… ffs

sagef for self blogging to make a point

No. 402989

>>402978
^ samefagging

No. 402991

>>402978

Yup, you can look it up on the EMR, but the point is, for various reasons, telling dxs over the phone is frowned upon, both as a privacy issue (it's hard to verify who really is on the other end of a phone) and a clinical issue (misunderstandings can be devastating - in med school, they told us about a guy who was told he had a benign brain tumour, but he apparently didn't hear or understand the benign part and tried to kill himself when in reality he had an indolent slow expanding benign growth).

No. 402993

>>402991
>>402991
When you have an established history with a patient over a period of years, how can it be hard to verify? On HIPAA forms, there is an actual check box for "leave test results on answering machine or with emergency contact."

How would my emergency contact go about verifying themselves when being called on a cell phone?

"Have anon call us back, their rdw is off and you or them need to pick up x script when you can."

No. 402997

>>402993

Easily. For instance, I have north of 200 people I consider established patients and I'll be fucked if I can determine whether I'm talking to them, their parents/spouse or a total stranger.

In fact, some sensitive units, such as UGM, send test results to your GP so that they can then call you to meet them and discuss them with you. So do we if we find something untoward. Even with established patients, if the result is that they have a chronic illness that will require a lifetime of adjustments, I'd like to not tell them that over the phone. That's just bad bedside manner, and God knows I'm not much for that to begin with.

No. 403001

holy fucking shit. sage for blogpost but i dont think ive ever been so pissed off by a thread. my younger sister was severely chronically ill with a lot of things that keep popping up on this thread and she passed away last year. she was 9. how fucking dare these people use this to be popular, for attention, how dare they take resources and cause truly sick people to sometimes be unnecessarily questioned (my mother had to meet with cps multiple times because they wanted to rule out mbp which was understandably extremely difficult for her.) absolutely disgusting.

No. 403003

>>403001

I'm sorry about your sister ;( it's totally understandable that this thread and the assholes contained therein would make you furious.

Sage for empathy.

No. 403005

>>402997
I live in a rural area, so there's not much confusion.

Sorry for assuming. :)

No. 403040

>>402991
>>402997

This has also been my experience. Even a simple blood test to confirm or deny presence of a disease was something my rheumatologists didn't want to discuss over the phone. They scheduled an appointment for me to come in and explain to me what the results meant and what they were prescribing to address it.

Which makes me feel this girl is full of shit. She's from the Boston metro area, there's no way that there aren't enough NPs or RAs to make a quick sit down with her for like a 15 minute discussion and explain the results.

Also the fact she had her tests done over the day yesterday, and got called ass-oh-hundred hours in the morning the following day? Fucking unheard of. It would preclude anyone going home and actually getting sleep. It would mean her results were processed overnight, and that her doctor and the nursing staff had time to meet late that night or early this morning to discuss and agree upon the the results.

So no. The girl is straight up lying.

No. 403074

>>403040

Also, typically, a GES is done by a nuke unit, then the nuke tech or radiologist writes it up, then that goes to their GI doc, then the GI doc passes it on to the GP/PCP. No freaking way you would get the results the next day.

No. 403090

>>402594

Ugh, Stem cell treatment won't do shit. Though it gets her a nice all expenses paid trip to the USA.

No. 403092

>>402594

Also many people with hEDS aren't diagnosed until their teens or later because the symptoms gradually increase until they can't be ignored any more (and in girls, puberty can be a major trigger for it getting worse). She's not mysteriously special with this.

Also her extreme deconditioning could be contributing to the symptoms. If you don't use your muscles or ligaments they won't be strong enough to hold your joints in place.

No. 403129

>>403092
The majority of people with eds who are diagnosed as adults have had health issues their whole lives, it’s just taken until adulthood to see the one doctor that puts all the pieces together. You don’t just randomly start getting symptoms, although it’s true they tend to worsen with age. But she reports being totally fine as a child, which doesn’t fit eds at all.

No. 403135

>>402663

Because she has lots of followers who will then round on any detractors a la HOW VERY DARE YOU DISAGREE WITH SOMEONE SO ILL.

No. 403138

>>403040
Eh, I worked at a GI clinic in a major US city, and MDs would call patients with results all the time. Depending on the severity of the issue, they would often have the RNs call to discuss the result and treatment plan with the pt for anything short of cancer. I’ve seen GES results be disclosed the next day too. The tech sends a message to the MD, MD reviews, diagnoses, and comes up with treatment plan, then sends message to RN to call pt. Pt can request call from MD or for the RN to ask MD specific questions, and call them back with answers.

My husband was notified of his cancer over the phone by his MD from a different hospital too. Maybe it’s because I’ve worked in a few extremely busy clinics where this was the norm, and the MDs are booked out for weeks or months for even the shortest visits, but I don’t see anything wrong with this as long as pt agreed to communication by phone.

No. 403140

>>403138
Cancer isn't that much of a deal these days anyway. You take a year off work for treatment, and 9 out of 10 people survive cancer these days.

No. 403147

>>403138

I mean, sure cancer, or a perforated bowel, or something more life threatening than gastropareisis in a fatty teenager. I guess I'm also a little suspicious because it's not exactly a private clinic either– she went to a public hospital and got tests done there, not tests by her normal GP. I'm still more likely to be suspicious that it's a bullshit story given that it's her story, rather than it being any suspicious defining factor of the practice.

Or maybe this is yet another instance of docs hoovering up healthy but money-paying clients in a bid to balance the books. If he can keep her in treatment with only a drug and a few check ups, it would balance out the actually sick people who need intensive, time consuming, costly procedures etc.

No. 403174

>>403090

Unfortunately, given her patronage of Breakspear, it's quite clear that any treatments she's getting rely on the placebo effect. So no wonder the NHS didn't want to waste IVIG on her (which she explained as having to do it privately because she's so complicated… girl, the oncology ward two floors up does IVIG for people with rare blood cancers etc. who are as complex as you get… you only have to pay for IVIG in the UK if you want it for something for which it will never have any use. She does not have an immune deficiency or a demonstrated autoimmune illness. She's a lunatic who thinks vaccines rewrite your DNA. And thanks to pushy borderline MSbP mummy + the extremely influential anti vax lobby (thank you anti-science idiots in parliament and the enablers of these Munchies like Breakspear!), nobody in the NHS could tell this girl that what she needs is a long stay in a psych ward with all her tubes removed, away from all medical stuff and doing a daily graduated exercise routine. Cut off from her enablers, she could have a future. This way, I'd be surprised if she does not die of a iatrogenic illness, most likely a line infection, and fuck me, I'm Dr Bad Guy for suggesting that instead of enabling her slow suicide, we should perhaps do the painful but right thing of locking her away from the crazy Munchie competition, get her off the fentanyl and get her out of her fake three outta four paralysis by some forced exercise.

No. 403180

>>403140
That was some OT sidestep there. Nah, he was stage 2 colon cancer due to Crohn’s, so he required just surgery as the lymph nodes were clean. No colon now, but better quality of life overall. Cancer free almost two years now.

Also, he only took the six weeks required to recover from surgery off. He worked an hourly job with no short term disability at the time and didn’t even have enough time off, so his coworkers donated theirs to him, and the company matched it.

Sage for blogging about people, who actually have life-threatening diseases.

No. 403182

>>403180

I worked through most of my cancer treatment, too. In retrospect, having all grown up since then and accompanied quite a few people through that journey as their physician, I am grateful work let me stay - it kept me sane and took my mind off the possibility of not making it out of this alive.

Sage for off topic talk about actual illnesses.

No. 403197

>>403174
This is the only thing that would help Chloe Leanne. And CPL too. It's sad they're so determined to keep any real help at a distance in favour of these fantasy worlds. Such a waste of time and money and medical resources, and their (could be) perfectly physically healthy young lives, if some iatrogenic shit does get them. I think they're bloodsuckers but I don't want them dead, I want them in the intensive psych tx they need.

No. 403222

>>403197

Oh, but if you deny that their issues are 100% organic - even for someone like CPL who used to self-harm, or others who had EDs or other issues -, you're ableist and all sorts of horrible things. It is beyond me why many of these people are treated for organic dysfunctions in the absence of hard evidence of a disorder when they have psychiatric histories that more than adequately explain why they're the way they are….

No. 403303

>>403222
They don’t realize that even real chronic illnesses have psychological facets (ex. heds can cause severe anxiety due to screwed up adrenaline release). If they’d admit that, maybe it’d get them started down the right path.

No. 403305

What are the classic signs of an internet munchie? I sort of know a girl irl but online all she talks about is her EDS and how awful her treatment is and how she can't afford shit but she spends a small fortune on high end cosmetics.

sage for no contribution

No. 403311

>>403305
Diagnoses in their bios, referring to the same issue by multiple names (I have EDS, hypermobility and bad knees!), listing hospital admissions, infantile behavior like saying "tubie", sucking up to obvious munchies like Jaquie, trying to get a tube (taking a wild guess that 99% of people with tubes on Instagram don't need them), having a spoonie account focusing on their illness or "raising awareness" but only in ways that direct pity at themselves. Posting constant updates about symptoms including gross and trivial shit that no one cares about (there's nothing to be ashamed of in having an embarrassing condition, but no one cares if you pooped today after three days of constipation, fuck off), and never anything interesting or life related. Having spoonie friends but not real friends, or preferring spoonie friends. Entering spoonie giveaways for stuff to signal how sick they supposedly are. BUYING A CHAIR instead of doing some fucking physiotherapy if wheelchair services won't get them one.

No. 403313

sage for samefagging but also - vlogging at all unless they have an absolutely unquestionable medical illness and, the most reliable signal - writing for the mighty, kek.

No. 403317

>>403311
And symptoms that sound exactly like every basic list you pull up-yes illnesses have the same symptoms, but it’s incredibly rare for one person to have every possible symptom. Also, they only talk about their illness, and nothing else, and they complain excessively about what doctors and other medical professionals tell them.

No. 403321

>>403305
Yeah, I think I have a personal cow, but I’m not sure. Started off with gastroparesis, then all of a sudden has EDS and pots and cant get enough calories through her feeding tube so she has to have tpn. She’s always going to the hospital for things that end up being fine, she calls herself a ‘super tubie’, but she also was bulimic for a long time and was recently sent to an ed treatment center to ‘help her eat againk’, but she was too complex for them.

No. 403323

>>403321
Post her.

No. 403327

File: 1507951168191.png (2.82 MB, 1536x2048, DED929F7-D179-470D-AA44-56A081…)

>>403323
Ok, here’s a sample, you guys judge (her IG and fb are both public). Tubes, lines, hospital visits all over the place. Can’t work, is on disability, but does a shitton of fun stuff.

No. 403328

File: 1507951222318.jpeg (454.29 KB, 1533x1883, 198D28A4-6CE7-49F4-8064-A6DBF0…)

>>403327
Maybe actually sick, I dunno. If she is actually sick, she’s way way ott

No. 403329

File: 1507951250654.jpeg (421.25 KB, 1536x1891, D6C03970-651C-4FC4-8680-63C222…)


No. 403330

File: 1507951278093.png (1.05 MB, 1536x2048, 328D1005-834F-42E5-A107-AAB048…)


No. 403331

File: 1507951297114.jpeg (205.04 KB, 1532x702, 9547E750-01C9-457C-BBC2-706005…)


No. 403333

File: 1507951543168.jpeg (394.1 KB, 1503x1072, E03D74CA-BF82-4263-8BB9-89B2ED…)

>>403331
Here’s the beginning of going to ed treatment…just a bit suspicious since the Phoenix/Mesa area is a huge medical specialist hotspot in the us (like mayo has a campus there, and a million hospitals)

No. 403335

>>403330

She looks very healthy for having TPN. Also while it's nice she gets out, surely someone with as many fucking tubes and shit would have a weakened immune system, but going to the zoo and ballgames doesn't seem to phase her.

It's so weird with these munchies. Either it's do nothing ever, or it's going way over the top. It's never just "oh hey I went to the library and then to the bagel shop."

Idk from my experience, as someone with a disorder that every time my immune system gets tickled it kicks my ass in the wrong ways, I'm usually one to avoid going to loads of mass event activities just by merit of not wanting to get the newest variation of the cold.

No. 403336

>>403335
Yeah, I was looking at that thinking "this person is not malnourished".

Also check out her dangling lines, I bet she watches Jaq's videos. I'm not quick to call someone a full on munchie but I think she's a former ana chan who's somatizing everything and has lucked out (according to the spoonie view of the world) by being hypermobile enough to score an EDS diagnosis. Probably benefit most from PD treatment rather than having her delusions enabled.

No. 403342

>>403336
She doesn’t go to the one EDS specialist in that area either, so I doubt that diagnosis. She’s also claimed her central line “fell out” (they’re sewn in until your skin and tissue underneath has grown into them, they normally have to be surgically removed and cut out). And of course her whole fb page is filled with praise and compliments and “you’re so brave”s

No. 403344

>>403336
I will admit I’m a bit biased since I’m the op, but it all seems a little fishy to me. I’m totally willing to admit I’m wrong though, and that it’s more of a personal infuriation

No. 403362

>>403327

Yeeeeah somehow that doesn't scream malnourished at the verge of starvation….

No. 403366

>>403342

In ten years of GI medicine looking after a LOT of patients on TPN, I have seen the following number of central lines fall out: one.

That was a young child who was engaged in some rough horseplay with other kids who yanked on his Groshong and out it went. Oops.

Feeding tubes do fall out from time to time - having also been briefly tube fed, I have had the pleasure of that happen to me, and it's gross as fuck. But central lines? They're solidly anchored and they have a small 'cuff' on the inside made of a material that the tissue meshes with, so sutures or not, the tissue grows around it and ripping it out is like ripping out a chunk of your own flesh.

I'm calling bullshit.

No. 403367

>>403329

I think you're trying hard enough… people with EDS don't go for a run and suddenly realize it's not that great an idea as their joints dislocate. Well before dislocations, joints sublux and that in and of itself is a pretty sharp signal to slow the f down.

Also, anyone with EDS severe enough to be affected like this by a run doesn't develop it overnight, which means unless this was the first time she ever ran in her life, she must be suffering from Chloe's Magical Rapid Onset EDS Without Prodromes.

No. 403370

File: 1507959610693.png (301.81 KB, 1268x1686, IMG_0386.PNG)

It takes outstanding bravery to claim NMO and scare people with low survival rates (lol what)… or is it MS? Or is it both (which doesn't happen)? But curiously, you can hang out in a hot tub without losing your sight and pissing yourself, as people with MS usually do in hot water?

Outstanding bravery indeed.

I'm glad awards like this exist, but handing them out without rigorous medical evaluation of all the evidence is just going to encourage more Munchies to play up the heroic card. Hey, why wouldn't you if there's a prize in it?

No. 403371

>>403333

No GI doc would ever refer a non-eating disordered patient to an ED clinic. Not only are ED treatment beds expensive and in short supply, insurance won't cover it unless it's, well, for an ED - and most clinics don't know how to deal with an organic GI issue that's not a sequela of an ED.

Also, oral food intake is not, NOT, not an accepted or workable method of getting one's enteral intake to go up. What the fuck is she on about? If she can eat, however little, then GI would focus on getting as many cals in via that as possible, and perhaps supplement it with enteral feeds, not jump to TPN.

Sadly, there are very few objective steps on the way to TPN and faking tube feed intolerance is basically as easy as saying it hurt and made her nauseous. Which is what she seems to be doing, and how she entered the spoonie big leagues that is TPN.

No. 403372

>>403331

Jesus. Her fb friends list reads like a who's who of Munchie Facebook, especially lots of 'mito' patients (lol nope). I would not be surprised if she claimed the golden trifecta (EDS, POTS, MCAS) and eventually decided she had mito, complete with wheelchair and oxygen/respiratory support.

No. 403373

>>403370

The curious case of the heat tolerant MS patient who does not show neurological symptoms, does not post about regular MRIs, does not seem to be taking any MS medication (especially if she is taking the IV or injectable ones, which I bet she would spam her feed with!)… what a crock of shite, and what a disservice to pediatric MS patients and parents, who already have an uphill battle to fight in getting a diagnosis.

No. 403374

File: 1507960499161.png (364.79 KB, 1251x1254, IMG_0392.PNG)

Step One to the Munchie Way of Getting Your Dream Diagnosis: latch on to a little kid everyone calls brave. People will think you're a good, altruistic person while you can copy their symptoms to your heart's content.

No. 403562

>>403371
Yeah, I read that and thought: "does she try to convince her followers that her doctors refered her to an ED unit with an organic problem, or was that the way her doctor tried to sell it to her?"

I don't get why a psychiatric evalution is not required before starting TPN unless in cases like short bowel syndrome etc., in which it's clear someone can't tolerate tube feeds. I've heard of hospitals requiring it even for PEG placements, just to make sure there isn't an underlying eating disorder or whatever. Since TPN is SO much more risky than tube feeding, I'd say that's one type of treatment you don't want to start without either a very clear cause or a psych eval, and preferably both. (Since even if there is a clear cause, I'd expect it to be scary as heck and it very much changes the way you live.)

No. 403565

>>402594
This is OT, but what scares me very much is that the way she writes is so alike someone I used to know online who killed herself after she asked her doctors turned her down when she asked for physician assisted suicide.

No. 403574

>>403562

At least over here we do not initiate TPN unless we have excluded any other causes. That means while we do not formally need a psych evaluation, it would be unusual for us to put someone on TPN where there's at least some risk that they're making shit up or having an ED. And still some slip through the net… (Paige, the Chloes, etc.)

No. 403595

>>403574
Of course, some patients are just too good at lying. I knew this girl of whom I was sure a large part of her problems was factitious, telling people how the psychologist agreed that she was soo healthy psychologically, that her symptoms couldn't possibly be somatization. How I knew for sure, you ask me? Other than the fact she found herself very interesting and always copied symptoms of the person she was closest to at that time, she was suddenly able to walk normally when she thought no-one was watching. I consider that to be quite indicative.

When patients are evaluated for possible factitious disorder, imo this should be done by a psychiatrist and not a psychologist (and I'm - in a few months - the latter, but as I'm not an MD I don't think I could possibly be asked to judge if someones symptoms make sense, medically) AND their medical records should be studied. No just going on current symptoms, I want to know how it all developed and if they tried to pursue other diagnoses or treatment before.

But that's just me.

No. 403610

>>403370
>>403373

Wow just stumbled across this thread and it is super disturbing about a lot of people I follow! In defence of Paige though, she has posted in her stories a photo of her drug list before which definitely said Gilenya (an oral MS drug). Think it would be pretty bloody tough to be prescribed Gilenya without a confirmed MS diagnosis.

Also to everyone getting all caught up over the hot tub image, I have MS and have hot baths/showers all the time. Just because heat exacerbates MS symptoms doesn't mean it happens to everyone, particularly if that person isn't symptomatic. If Paige had optic neuritis, bladder issues then yeah maybe she would wet herself/go blind in the hot tub, but don't recall her ever claiming to have those problems.

No. 403611

what's the latest on Jonzie?
Been offline ages. Last I saw she'd resurfaced as a full on munchie wearing epileptic helmets.
She's always been one of my favourite cows. I know I know READ THE THREAD. Have been but there's a lot of shite n blogging n crap to sift through to be fair.
Kudos to whoever caught up with her thus far!

No. 403624

File: 1507988919948.png (659.39 KB, 814x602, wtfkaty3.png)

Has Katy been posted here yet? I forget.

Katy is ostensibly a nurse (what specialization, I don't know), but more importantly to her, a super seriously ill spoonie u guise.

Actually, she's really the only one that creeps me the fuck out, because this is one munchie who has medical power over others, and given her obvious narcissism and host of other mental issues, I really worry about the people under her.

And, as a nurse with actual training she can do that whole giving a story of a rare disease and have some credibility. Although I'm not sure how nutcracker syndrome landed her in the hospital.

Docs and medtechs who have had serious illnesses while working at your job: you've discussed your condition with your co-workers, right? But probably never taken it to instagram to this degree?

No. 403627

File: 1507989242915.png (332.41 KB, 933x619, wtfkaty4.png)

>>403624

A follow up with Katy. 5 surgeries on her stomach? 5? Is she couting those tiny buttonhole surgeries? I believe maybe one or two, because she has a gnarly, long scar going down her stomach, but it's the first time I've heard surgery as an option for at least one of the things she lists in her tags, like gastro.

C'mon lady. Stop trying to garner admiring asspats about this shit.

No. 403651

>>403610

Gilenya is a first line relatively harmless
MS drug. Sometimes it's prescribed for CIS and radiologically unconfirmed clinical MS or 'borderline MacDonald' MS. It is definitely never prescribed for NMO. Mainstay NMO therapy is immunosuppressive. Adolescent MS guidelines strongly favour early DMD therapy so she could have easily scored some fingolimod some other way, especially by whining about not wanting to self-inject and not wanting to go on birth control (which you have to on teriflunomide). Or, even simpler… she put it on her drugs list. Considering there are more photos of her tubes around than there are of the jets hitting the Twin Towers, I am surprised there's not a single one of her MS meds, her MRIs, her radiology report etc.

No. 403655

>>403610

Yeah, she has NMO without optic neuritis and transverse myelitis ;) lol

Or she has the mythical pure white matter MS, which happens but is fairly rare. If she claims she has a clinically significant form of MS that means she can barely walk unaided etc. it's safe to say she would have issues with hot water.

Her whole case doesn't make sense.

No. 403663

>>403624

I only discussed it with my boss because he was my GI doctor when i had cancer a few years ago. Some of my sharper colleagues have spotted my port (it's poking out a lot these days). But never instagrammen my own illness sheesh.

No. 403668

Future blogposts in this thread will receive bans of significant length. If it continues, the thread will be locked since it's mostly selfposting and blogging at this point.

No. 403672

>>403627

SMAS has a surgical route but the rest? Maybe doing a Nissen or a Thal subtotal fundo for GP.

No. 403673

>>403610

Hi Paige.

No. 403674

>>403672

This shit is cancerous. It's endless. Post milk or shut the fuck up

No. 403682

File: 1507999636820.png (323.84 KB, 1179x1270, IMG_0394.PNG)

Yay more panic mongering by the scientifically illiterate.

The phone number is the Bexsero pregnancy registry. A lot of drugs have special pregnancy surveillance programmes, which does not mean they're dangerous (unlike e.g. isotretinoin, which has a patient registry that patients need to be enrolled in before administration due to the high risk of malformations) - it's a way to study outcomes post-marketing. Of course, the woman who thinks that vaccines contain DNA and can give you EDS can totally diagnose you had an 'adverse reaction' from a photo.

Btw, she does indeed have the most severe common adverse reaction of the flu shot: erythema and pain at the injection site.

No. 403686

File: 1507999768695.jpeg (127.52 KB, 750x530, 0436A74D-3672-46F1-AA0E-B0F631…)

No wonder people like bendycripple continue to be munchies! they get people like this suggesting that TMJ DSYFUNCTION (everyone has a TMJ; having TMJ is not a disorder) is TN! kek pain and popping (and some other stuff) is NOWHERE close to TN!

No. 403687

>>403682
Chloe Leanne is a public menace. She's the only munchie (apart from Kelly when she was draining the blood supply) causing such direct and obvious harm. Is there any way to stop her? I don't mean in an online army way, I know it's against the rules. Genuinely asking because I'm at a loss but she disturbs me so much. Her lies and fearmongering are reaching such an extreme.

No. 403692

File: 1508000404245.jpg (55.05 KB, 640x760, IMG_0349.JPG)

>>403687

No, sadly being an idiot is not against the law, and unfortunately anyone taking her to task would be forcefully silenced by her army of sycophants who would ruin your life for bullying such a poor sick creature. The anti-vaccine movement rides on the wings of stupidity, and there are few powers on earth that are more powerful than that. They'll wheel her out and show her as the true cost of vaccines, and you've basically lost.

And given that she's not really terminally I'll just making shit up, she will be around for a loooooooooong time spouting her dangerous nonsense.

Pic related but not Chloe.

No. 403703

File: 1508001681962.jpeg (209.37 KB, 750x679, D70134FE-F1B4-4A01-B261-453168…)

bendy is also another one (re: Jaquie, Shelbi, and other gp munchies) who continues to eat/drink things that make her sick with her “gastroparesis” – totally NOT bulimia guise!!! You would think that something that makes you throw up a lot would cause your mind and body to be disgusted by that thing…

No. 403705

File: 1508001808132.jpeg (337.91 KB, 750x1334, 418D9F7D-0585-4118-8799-8621D4…)

>>403687
Chloe is a public menace, yes. I called her out and my personal Facebook was posted on her IG story and I got plenty of hateful responses-beyond the expected “you’re stupid” responses. I was told that it would be better if I were nonverbal (which came out of nowhere but I guess they were wishing severe autism on me? Yeah, my loved ones would prefer that to death or me getting polio.
I think some of what I said, beyond my original response to her, was posted when we were using the temp site. I can post it again if you want (including Chloe’s own sweet response kek).
People have said that her army (and she herself) will attack you. It’s true. Calling her out made me fill a lot better though.

No. 403709

>>403705

Vaccine skepticism and 'helping' the 'vaccine injured' is big business. Even the government is playing along (see: sodium oxybate is funded only for vaccine damaged narcoleptics in the UK…), there's always the hope for a class action lawsuit that will net them millions and of course the 'clinics' that make a mint out of giving the attention to these idiots that thankfully the NHS is unwilling to give them (for now) need to protect their revenue stream. You're brave for publicly going up against her. Anti-vaxxers are like a cult… one that is not afraid of dirty tricks.

No. 403710

>>403703

That's unlikely. Unless you had something else in your stomach (in which case you'd have thrown that up as well), liquids would have passed into your jejunum by then…

No. 403717

>>403710
Not to mention that plain coffee is pretty bland and easy-ish on the stomach (obviously not as easy as water), but she almost definitely had milk (I know what she usually gets and it’s not black coffee coffee) or soy in it (latte, mocha, mocciato) – two things that you typically avoid in GP anyway… She’s making herself sick if she truly has delayed emptying just like these others.

No. 403719

>>403709
Being brave is the last thing I was, honestly. It got so bad I was having my fiancé read my responses before I did because (sorry for blogging but seems relevent?) I’ve dealt with my own depression stuff and you never know what they’ll say. I honestly didn’t know what I was getting in to. I was just fed up.
Upside to that was a message from someone who agreed with me!
I learned anti-vaxxers really dislike being linked to medical journals.
Would I be mistaken in believing that anti-vaxxers are only even remotely taken seriously in the U.K.? Like, if I mentioned vaccine injury to any of my docs they’d look at me like I grew two two heads.

No. 403731

File: 1508005162231.png (662.01 KB, 853x677, sweetspoonieprincess screensho…)

Okay i haven't seen anything on this girl in here, but good god she's OTT

She started out with getting a service dog for her PTSD, then she started getting sooper serius lung infections all the time. Suddenly her service dog was also a syncope alert dog. And just a few days ago she got the precious combo of EDS and POTS.

Her EDS was diagnosed by beighton score + her history of injuries kek - that doesn't mean EDS. At most she was a mild case of HSD. She uses the spoonie term to its breaking point and her shopping often contains of medical alert bracelets stating important information such as "fish allergy"

The worst part: she does the most cringy music.ly's i've ever seen, often while using her nebulizer.
Oh and she's also a "little"/cglre

Ig @sweetspoonieprincess

No. 403736

>>403719
You'd be mistaken as to thinking anyone gives a fuck about your woe is me diary!
You're not sorry at all.
WTF is going on with this thread
Grow 3 heads bitch

No. 403742

>>403687
Maybe writing Skeptic Magazine or something like that (preferable someone who is able to get lots of publicity - wouldn't know where else to start as I'm not from the UK) and ask them to look into her case and publish about it?

No. 403743


No. 403744

>>403668
Please enforce this.

No. 403746

>>403736
You’re sweet but I was responding to someone else. It’s not like I posted a whole paragraph about how awful my life is. It was half a sentence. Calm yourself.
The only reason I said anything at all is because calling Chloe out got me more than 100 comments of hate and most munchies never act that way or would go so far as to post someone’s personal account to (I believe) more than 10k followers. I don’t want that to happen to anyone here unless they are okay with that/know what they’re getting into.
But I’ll work on growing three heads, thanks.

No. 403748

>>403746

Nobody gives a fuck. You're missing the point

No. 403751

>>403748
Don’t worry, I won’t post anything else unless explicitly asked. Sorry for the inconvenience. I thought it was relevant, I was wrong.

No. 403752

File: 1508007631599.gif (491.49 KB, 500x316, images.duckduckgo.com.gif)


No. 403769

>>403731

Irlen syndrome aka Irlen-Meares scotopic sensitivity syndrome is a huge tip-off for bullshit. The theory is that Irlen is a syndrome manifesting similar to dyslexia and in some sense related to ASDs. It use to be big in the heyday of internet autism, when people were scammed into buying expensive filter glasses that were supposed to help. It's a complete woo diagnosis.

SBM debunks it: https://sciencebasedmedicine.org/irlen-syndrome/

No. 403780

>>403769
Not who you replied to but I’ve never even heard of that before and I love learning about bullshit diagnoses- did it not ever gain much traction?
It always kind of annoys me when people list chronic bronchitis because I never think they really have it. If they did, they’d list it as COPD and real chronic bronchitis is a form of COPD.
Yes, munchie with asthma, you get bronchitis sometimes. It’s annoying. That’s doesn’t equal chronic bronchitis.

No. 403781

>>403780
are u ever going to piss off

No. 403788

>>403780

It did gain plenty of traction in that a lot of Irlen lens sellers got pretty rich, and it used to be widely diagnosed in the UK by quacks hired to get little Johnny extra time on their GCSEs. Fortunately, it's now more or less in abeyance.

No. 403789

>>403781

What the fuck is your problem?

No. 403811

smas is supposed to be extremely rare, yet I see dozens of spoonies diagnosed with it. It makes little sense. I've even seen someone with a duodenal tube claim sma syndrome, which seems to defeat the point of a tube in SMAS?

No. 403812

>>403769

Yeah, I’d never heard of it, but when I googled it, the top result is the website that sells the colored glasses.

No. 403813

>>403811

Well, it's a diagnosis of exclusion, so it's a Munchie's wet dream. No objective tests, pretty common and easy to fake symptoms, surgery is only sometimes effective, and a great cover for EDs that at the same time provides spoonie toys. What's not to love, eh?

No. 403814

>>403811

As far as I know, it is really rare. And it pretty much only happens in very underweight people. But there’s nothing stopping spoonies from claiming it. They probably wouldn’t want it if they knew it was usually reversible. But anything they can do/claim/say to get one of those precious toobz kek

No. 403815

>>403813
I thought it usually goes away after significant weigh gain? I’m probably wrong kek

No. 403816

File: 1508015623123.jpeg (363.03 KB, 1568x930, 891F4FE5-812E-4573-BA72-584E51…)

>>403811
Not a doctor, but pretty sure the weight of most spoonies rules it out. I think I saw a valid case of it on IG recently, but it was in a baby who had been in a spica cast for a long time after surgery, and it was so sad because her parents tried everything, but you could see this poor girl’s ribs.

No. 403818

>>403788
So it was something more prevalent in the U.K.? I’d just never heard of it. Thanks for the response.

No. 403819

>>403815

Actually, even modest weight gain is sufficient to reverse it if the weight is stored as fat. However, similar to MALS, there is at least a theory that revascularisatoin does not always happen properly, or at least that's what spoonies use to explain why they weigh a ton but still claim SMAS.

No. 403822

>>403781
I asked someone a question. Is that not allowed here anymore? Someone (possibly you) didn’t like something I was posting about. I stopped. That’s what you wanted, right? Would you prefer I not post anything, including milk?
What do you want me to do? Why do I seemingly make you so angry that it bothers you I asked someone else a question?
Actually, how do you know I’m even the same person who was asked to stop posting about what happens when you publicly confront Chloe? I am, but how do you know that?

No. 403824

>>403822
Not the same anon, but you omit to sage every time, that and your self-important posting style tend to stand out.

No. 403825

>>403824
Thanks for not being hateful towards me. I appreciate it. I’m sorry about forgetting to sage. I’ll go back to lurking now.(USER HAS BEEN PUT OUT TO PASTURE)

No. 403831

>>403825
you may have missed this important admin message from 6hrs ago >>403668

No. 403937

File: 1508031781876.jpeg (203.69 KB, 750x737, 25D96819-BD30-4C24-9684-FBE942…)

bendy is now getting convinced that she has TN from strep. kek these anons tho

No. 403940

File: 1508032437825.png (134.92 KB, 1145x986, IMG_0399.PNG)

Found this on Bendycripple's. Whcih one of you reprobates did this? :)

No. 403945

>>403940
YOU did
and u are boring as fuck

No. 403947

>>403945

Err, no I didn't…? I don't even know what creosote smells like. Also, it's frankly pretty funny.

No. 403949

>>403945
Your retorts are the most boring thing here. Stop shitting up the thread.

No. 403955

i think there's a troll on here kek
>>403949
>>403781
stop being an asshole so i dont have to cringe at the Edge and be distracted from the malingering fuckwad cows

No. 403957

I would have way more respect for these gastrocunts if any of them had the guts to admit it was caused by purging (assuming they really do have GP)

No. 403970

Angie Dong is back. I'm really confused how a person who claims full bedbound status has not gone to a care facility and instead chooses to rent flats or hotel rooms and suffer alone and pay for expensive carers but I suppose they'd claim it's to be hidden from their supposedly abusive parents. But wouldn't a facility block her parents from seeing her without her consent since she's of age? I do believe she's partially disabled or mentally convinced herself that she is. I have friends who know people who know her and say it's pretty bad but Im just so puzzled. Further alarmed by her thorough write ups. Could she use that ability to type for freelance writing? What does she do all day? What independence is she preserving?

skagra3482.tumblr.com/post/162152554725/over-1100-people-were-manipulated-with-deliberate

No. 403972

>>403668

Oh PLEASE also stop the medfagging too! It's taken over this board.

No. 403975

File: 1508041931012.png (291.03 KB, 1531x1447, IMG_0402.PNG)

Lol, the most transparent sign of a scam: 'urgently need [lots of cash] by tomorrow or irreversible, disastrous consequences will follow!' Oh, Angie…

No. 403978

Also, at risk of being called out for medfagging (sorry!) - Angie's medical records (https://skagra3482.tumblr.com/post/154956743845/do-not-reblog-digital-markings-eg-page-numbers) are nothing if not unusual. A doctor's letter without a letterhead? The weird language? The whole thing stinks.

No. 403981

File: 1508042482193.png (396.63 KB, 1356x1498, IMG_0403.PNG)

Also worth noting: the only name she did not redact was her GP, Mark Donohoe. Of COURSE he runs an 'integrative' (read: quackery) clinic… like Breakspear but with more kangaroos and crikey!

No. 403983

>>403972
This. I think we need a New England journal of medicine thread over in ot.
saged opinion

No. 403986

>>403983

I don't know, often enough the medfaggery, when germane, tends to be useful in explaining why a particular Munchie's claims are so preposterous. It's like trying to discuss Luna without mentioning heroin.

No. 403987

>>403986
I agree. But it’s up to the admins, of course.

No. 403990

>>403981
plus her seeing a doctor in Mosman (one of the most expensive suburbs in Sydney) when she's said before that she lives in the inner west doesn't make any sense when he's not even a specialist - she should at least be seeing doctors in her local health district.

No. 403998

I have some thoughts on what I think I supposed to be a letter from one doctor to another on Angie Dong’s tumblr but it may come off as medfagging so I’m not sure I should. Would y’all prefer I not? I just wanted to ask first.

No. 404000

>>403975

She can only be carried out/moved by paramedics because of her CRPS?! Oh come On! I was wheelchair bound for a period of time due to my crps but this is to the crazy extreme. This feels like such a scam with all the money needing to be raised immediately otherwise her caregiver is going to be deported?! This is so OTT and beyond it is laughable. Who buys into this load of crap??? My jaw is hanging down just reading this :-o

No. 404001

>>403981
Integrative clinics are not all wack-a-doodle in Australia. They seem reasonably straight compared to what's going on overseas. The Dr you see is a GP. I've been to some here and the issue is price really, of consults and treatments. I go to one from time to time as I need a different kind of advice than a regular GP will give. But obviously, some do see them to avoid too much questioning over their conditions.

No. 404003

>>404000
it reads to me exactly like the money is going into her caregiver's account, to meet immigration rules. the carer is a student so I doubt they are qualified in Australia for this part-time work role.

No. 404004

File: 1508046441182.png (1.18 MB, 1440x2560, Screenshot_20171014-224554.png)

"I'm your kids future ER doctor"

..dear God.

No. 404005

>>404003
Maybe this is ignorant of me but if this were me, having this happen (especially if it happened more than once and it sounds like it has) would make me want a caregiver who is a citizen. I get that there are bad caregivers, but that doesn’t mean there’s only one good one.
Are there not companies in Australia that supply caregivers and monitor them to ensure they’re professional and what the patient needs?

No. 404007

>>403978
That is the longest letter “written by a Dr” I’ve ever read and why such great detail? Specific details generally aren’t given and the provider letters are much more concise. I’m calling BS.

No. 404009

I have a big hunch Angie has convinced herself that shes disabled after she had her fall and most doctors haven't been able to qualify her for much because when they examine her they find her healthy with no nerve damage? This could also explain her strained relationship with her parents because her parents agree with the doctors. I feel like she would not truly be in this situation if she actually had cprs.

Does her ability to type and type a lot indicate anything? Hand strength to use a wheelchair?

No. 404016

>>404007

The entire letter is unusual. The tone is weird, even for Aussie docs' letters, which are a little different from what we are used to here but not THAT much. But the weirdest part is the very non-medical way of going about writing it, the lack of standard headings, no clear dx part, the explanation of cortisol's physiological role (whaaaaa'?) and my absolute favourite: referring to the patient as 'unfortunate'. Now, I know some doctors who have had long relationships with patients who have a tragic story, and sometimes that comes through, but this is excessive. I think this is the letter Angie thinks she SHOULD have received rather than what she indeed DID receive, which was probably rather different. I have never in my life seem the 'every objective test result is normal which only strengthens the diagnosis of this serious disease' line of argumentation, which is truly weird. Clearly she is unaware of what objective findings would be expected in CRPS.

No. 404017

>>404005

I don't know about Australia, but in my experience, the fact that someone is a carer for a seriously ill person might well get a stay of execution of the deportation order until alternative arrangements are found. The entire scenario is unrealistic.

No. 404019

>>404004

Think I've commented on this before, but maybe it bears repeating. There are few areas in medicine that require a degree of physical fitness and bodily integrity. Emergency medicine is one. There are doctors with very serious medical conditions, there are paraplegic surgeons, there's a world-renowned pediatrician who has OI… but ER docs need to be able to perform a lot of fairly physical maneuvers, and that's sadly essentially incompatible with some chronic illnesses.

Sage for medfagging but the point couldn't have been made without it.

No. 404020

>>403998

I'd be happy to hear it… but perhaps admins can weigh in on how much medfaggery is still ok.

No. 404022

>>403668
THANK YOU thank you thank you! This thread too often veers into a bit of an overblogging spoonie shitshow. This is an ANONYMOUS imageboard people. No, we don't give a shit what personal illness you have and no, you do not need to blog about your crap under the guise of it being relevant. Fuck off with your 'better than the other spoonies' illfag blogging in here. If you can't help but bang on about yourself then don't fucking post.
>>404021
I agree re: medfagging. Relevant comments to explain why something is suspicious or contradictory to actual medicine are good. Cross-talk posts between clinicians or general rants or tangents which have nothing to do with the OTT's being discussed are not okay.

No. 404023

File: 1508053349056.png (735.51 KB, 750x1334, C5A3EC27-8609-4476-8829-EE4F7F…)

>>404020
It’s this one I’m particularly interested in. First thing I noticed was the “many thanks”. That just seems odd. Why would you be thankful you got to see a patient if you were a doctor?
This sentence is extremely problematic:
“She is an unfortunate 20 year old with extremely severe problems.” Calling a patient unfortunate would be unprofessional and the emphasis on “extremely severe problems” seems inappropriate. That’s not how you relay your assessment of a patient.
That’s all I’ll say as I know some are possibly annoyed by medfagging.

No. 404027

>>404021
I would agree with this. Medfaggotry that explains why something a munchie posts is ridiculous can be helpful.
Sage for no contribution.

No. 404028

>>404023
If you are concise about why things sound weird, I don't see any problem with medfagging. I think when shit gets excessively technical and clinicians are replying to each other in shop talk comments that take over the discussion, that is when medfagging becomes a problem.

No. 404029

While we are on the topic of inappropriate posting issues, can I just remind people:
YOU DO NOT HAVE TO SAY WHY YOU ARE SAGING! Please stop the "saging for …." closing statements; they are superfluous and annoying. This is a pet peeve issue that has infected this site due to newfaggery. Please stop.

No. 404034

>>404023

Many thanks is common. These letters go to the patient's GP (PCP) and it's common courtesy by a specialist to thank the referring clinician.

No. 404035

>>404023

Personally the weirdest part to me is that while the injury mechanism of the initial injury is described, its consequence isn't. Did she have a rotator cuff tear? Did she dislocate? etc. - this would be pretty standard to note…

No. 404037

>>404023

It is also quite revealing that it does not differentiate between what the patient conveyed and what they themselves found. Rule #0 of writing clinic letters is to make it always very clear what the patient's self reported history is and what our findings are. This takes Angie's reported stuff as solid fact, all and the whole. That's very unusual… or not of course if you are pretending to write your own doctor's notes….

No. 404038

>>404034
Ah, okay. It just seemed odd since I’ve personally never seen it.

No. 404073

>>404016

The whole letter is very odd. (sidenote: this letter/conversation has happened before)
I will say that I have actually seen doctors (in the US) use "unfortunate" to describe a patient in notes more than once (They are sometimes encouraged to use an adjective to describe the patient - typically it is something like "pleasant")
However, describing someone as having "extremely severe problems" doesn't fit for a doctor. Its also very weird that the letter is thanking someone for referring the patient yet them spending the majority of the letter going over medical history/patient report (and as previous person stated it is odd it is taken as fact and not noted as "patient report". The referring doctor should already know this history and no doctor has the time to write/read redundant information.
This all does make more sense if you wrote the letter yourself.

Additionally - medfaggery seems fine when explaining why milk doesn't make sense. However this board has recently gone into long tangents discussing medical information that ends up no longer relating back to a cow.

No. 404088

>>404073
Is it possible that she asked a doctor to write certain stuff in more detail to be able to later use the letter for some sort of insurance or disability claim? Just a thought, because the letter reads as a hybrid between an actual medical letter and an exposé by a bad lawyer trying to explain how sick his client actually is.

No. 404091

>>404088

I don't know about Australia, but over here, those letters have to be in a particular form. Among others, they have to be on letterhead, but also have to be formatted like an expert's testimony. There are some rules for format etc. for that. I find it very hard to believe that a doctor would voluntarily write something like this.

No. 404092

Was this posted here before?
http://andyzer0.tumblr.com/post/160352743900/emergencybedridden-facing-homelessness

I suddenly remembered that I had read somewhere about there being several fundraisers for Angie Dong (sometimes spelled differently or using another name) and how it was all a scam. What I couldn't remember though, is if lolcow was actually the place that lead me to this the last time I read about her. So sorry if it is. If it isn't, or if it was but you haven't seen it before: enjoy. I think there's more about her to be found on anti-hoax sites.

No. 404108

>>404092
We have definitely been over her and talked about the dr's letter before. In an earlier one of these threads.

No. 404124

>>404108

A lot of this has been gone over, like you said. It resulted in Angie flouncing, going dark for a few months to lick her wounds, and then coming back to beg for money.

Munchie thread 3 started off talking about Angie:

>>>/snow/237479

No. 404126

>>403987
Sage.your.fucking.posts. Jesus Christ, you can hardly complain when you're clogging up the thread with unsaged whining

No. 404128

File: 1508079085470.png (1.55 MB, 750x1334, IMG_6766.PNG)

Last Dani was mentioned here it was noted that it was suspicious that she claimed she couldn't keep even a bite of solid food down but could take large handfuls of pills with no problem. Surprise - guess who can no longer keep any pills down?
Claimed she was doing an only liquid fire but now complains that even the small bites of solids cause hours of vomiting (if even the tiniest bite of solids consistently causes you pain/nausea/vomiting you think that would be enough motivation to stick to a liquid diet)

No. 404133

File: 1508079689810.jpg (432.71 KB, 1200x1800, IMG_6771.JPG)

Additionally she is claiming her doctor at home refuses to see her for anything related to her stomach/nausea/vomiting and that only the doctor at temple will see her (even though it seems more like she really is just participating in research studies there). I suspect the problem is more that her regular doctor is tired of her inconsistent presentation and likely drug-seeking behavior.
And I could be wrong but it's also really weird that she claims her insurance won't allow her to go to urgent care - only a doctor or hospital. Around here the urgent cares take Medicaid and most insurances try to discourage you from going to the hospital instead of urgent care because it is more costly. I just suspect she has worn out her welcome at urgent care because it probably looks like she is going there looking for drugs (they tend to have notices about not treating chronic pain for this reason). Plus hospital visits are worth more spoonie points.

I doubt she had been following any sort of recommended diet as she says her sister who has been living overseas for years is visiting and most family reunions are centered around food (and we know she can't resist it). Her sister is probably getting a lot of attention and is a stark reminder that she sits at home and does nothing.

Additionally - you would think someone who vomits as much as she claims wouldn't want to keep the lip/tongue hardware in place.

No. 404139

>>404133

lol I love how the area docs are getting wise to Dani's malingering and turning her away. At least they've put their foot down with how much they'll let her waste resources.

Also grogeous_gatorade_princess has moved into a private instagram, which is a little sad. More work to get milk. @chronically_couragous

No. 404140

File: 1508081327466.png (645.36 KB, 815x600, wtfsara.png)

I think this is the first time I've actually heard Sara admit she has a personality disorder, and no surprise, it's borderline. Also

>My Mom used to feel the need to check in with me daily up to a few months ago


More like "I used to be an insufferable bitch to get attention like threaten suicide or self harm so my mom would call me."

It's good she has some self awareness, but god damn if she has so little empathy for people. It's like they're just there to fill the black hole of need.

It also sheds light onto this whole rheumatoid arthritis thing. She may actually have that, but the whole flushing issue, the pushing for magnesium infusions, any extra medical procedures I'm hazarding to guess were to get the attention she felt she needed.

No. 404173

>>404140
you don't get sympathy or spoonie points for BPD.

Didn't she claim to have a big heart and people are always praising her for being extremely empathic?

What I don't get about the whole RA story: is it really that bad? Before she moved out she wasn't able to walk long distances or stand for a long time. Did the lack of attention improved her RA?
Her shoulder is healed, so of course she needs another health crisis to milk. It seems like the people around her don't give her enough attention, when she whines about her super serious TN and chronic migraines.

No. 404178

>>404133
Insurance prefers if you to urgent care, since it’s considerably cheaper than an ER, and urgent cares typically accept all forms of insurance, so that claim is bs. But really she’s still trying to get that feeding tube she so desperately wants. She’s obviously just going down the list of GP symptoms and claiming every one of them. This is the woman that has self-tubed multiple times in the past, without any valid reason, so she’s now trying a new angle. She had no problem eating food literally a week ago, not too long after her testing showed Very mild problems that could easily be caused by her history of disordered eating or medication. The eating disorder route wasn’t getting her a tube because she can’t keep herself from eating junk, so she’s swinging back to the claim of GP.

No. 404204

>>404178

She claims to have Medicaid/Medicare. I did a little research of Medicaid in New Jersey and there are urgent care centers that accept Medicaid. I do not think urgent care is required to take medicaid and there was an (old) article that suggested that urgent care centers are not as accessible in low-income areas as they try to target people with private insurance that reimburses better. So there is the remote possibility that the urgent care center closest to her doesn't accept Medicaid. However, I really doubt it as unless the urgent care is overflowing with business, then low reimbursement (since they aren't likely to be doing any high cost tests/procedures) is better than no reimbursement (and the benefit of Medicaid is that you tend to know how much they are going to reimburse).
That being said - I think the urgent care won't take me is more of an excuse - she either hasn't tried since hospital visits make her look sicker or they don't want her since she complains about chronic pain/problems (her casually claiming to misplace pain medication suggests that she likely abuses medication - not necessarily intentionally). The fact that her local doctors don't want to see her (and neither do the urgent care - or even the emergency room - suggests that they have caught on to her. I actually think that while she appears to be attention seeking online, in person she probably appears to be drug-seeking with her complaints of severe chronic pain and medical history that doesn't add up - especially since her facial expressions rarely show pain).

I think her doctors/therapist are trying to push for her to get off of disability and the thought of that is probably terrifying (I assume she has little work experience and would likely only be able to get a minimum wage job, which is pretty hard to survive on). Having a tube strengthens her argument to stay on disability (as well as having hospital visits instead of regular doctors appointments).

No. 404210

>>404204

Admins and mods, is calling people out for speculating on stuff that isn't known, self blogging?

I have a condition which requires IV fluids in an emergency room setting with possible admission if it decides to "take me out" one day. RA doesn't effect just joints, but is systemic.

My main diagnosis is SLE, And I call my GPs nurse line if I am feeling like death that day. Ten times out of ten they tell me to go to the actual emergency room because it's a condition that can cause death if not stabilized.

Now maybe I'm being over the top myself, but if RA is systemic, can't it cause lung conditions and such that would require stablization that isn't doable in an urgent care? Out in my area we jokingly refer to urgent cares as "Doc in a box" because that's what they resemble.

No. 404214

>>404210

You have your cows mixed up I think. The urgent care is in reference to Dani/endlessvoices. She doesn't have arthritis. She is claiming she is having constant nausea/vomiting and that she can't keep any meds down (and thus can't take her anti-nausea meds). When someone asked why she doesn't go to her doctor to get the anti-nausea med that dissolves in your mouth she said her local doctor refuses to see her and that she can't go to urgent care due to insurance. This is not a case of her having a severe illness that may require legitimate hospitalization. She reads this page and whenever someone questions something about her (like her claims of not being able to eat a bite of solid food but being able to swallow a handful of pills) she suddenly develops those symptoms.
To give Dani a little bit of credit - she has seemed to reduce her frequent flyer status at the hospital (probably because she is well known there and per her report they either stick her in a corner for a long time or try to kick her out as soon as possible).

No. 404228

>>404214
And it’s not like an er is going to do much for nausea kek. She probably just got tired of waiting for nothing

No. 404241

>>404210
I’m assuming this is in reference to Sarah (littlemisswheeler)?
I have SLE as well and if I go to my doctor and my UA is showing infection, my (personal-this is not standard) course of treatment includes a liter of saline in outpatient emergency and some super obnoxious antibiotics in IV or IM form. If my blood work shows my lactate level is off, they load me up on IV saline until is better.
RA is systemic as well, just like lupus and while Sarah can be OTT, she’s gotten better about it IMO.

No. 404283

>>404241

Not all RA is systemic… in fact, pauciarticular RA is usually not systemic at all. However, most of its systemic effects, such as hematological issues or RA associated pulmonary fibrosis, have a very gradual onset and >>40210 is right in that most urgent cares are ill equipped to deal with the more complex sequelae.

littlemisswheeler seems to have one thing in common with many other Munchies discussed on this board: BPD that is expressed through emotional manipulation of others via illness and suicide threats.

No. 404286

File: 1508103649775.png (87.7 KB, 640x834, IMG_3094.PNG)


No. 404287

File: 1508103676572.png (59.09 KB, 640x747, IMG_3093.PNG)

>>404286
Missing the attention?

No. 404292

File: 1508104862152.png (2.34 MB, 1536x2048, 41D00BD7-1152-47C9-BE9C-6FC68A…)

She’s sucking in her ribs so much.

Pic 1/2

No. 404293

File: 1508104914492.png (276.22 KB, 1536x2048, D743777D-2EE9-4D4F-BC2F-922267…)

>>404292

I swear these grown women act about 15.

Pic 2/2

No. 404325

>>404292
This is not normal.
She looks pretty damn excited about showing off her tubes for someone who’s so self conscious. Really the only thing showing is her obvious eating disorder. Not to mention that it takes longer than that for a malnourished person to feel better after starting tube feeds. .

No. 404331

>>404325

Yes but she’s on Kate Farms which is magic miracle formula for poor malnourished people like Aubrey. It worked exactly the same for Chronically Jaquie too.

No. 404340

>>404331
They make special formulas for people who can’t handle normal ones that are also allergen free and peptide based, but that insurance will pay for. No need to buy something organic and whole-foody, unless you have an eating disorder.

No. 404341

>>404340
(Although she was totally without a tube for a while, and didn’t die, so she probably doesn’t need a tube at all)

No. 404410

All these munchies jumping on the CRPS train makes me wonder… are there doctors who diagnose CRPS with absolutely zero physical abnormalities? You can’t have CRPS if your limb looks normal. You’d have color change, edema or atrophy, a temperature difference from your other limb, and eventually most likely bone changes seen on a bone scan, as well as deformity of the limb itself. How the fuck are they trying to fake CRPS?

I’ve seen two munchies in the past who tried to fake it in various ways before being caught. One would submerge her limb in a bucket of ice water before a doctor appointment, and the other literally burned a fuck ton of sores all over her arm to claim she’s “burning from the inside out”. How the fuck do you fake that disease without any physical findings? What the fuck.

No. 404414

>>404410
Bone scans are no longer diagnostic for CRPS. And it can occur without significant color change (there will be some). However, I’ve never seen a case with no physical indicators. There’s a list of signs and 3 (I think I remember right) have to be clinically verified. The temperature difference (and a significant change after a sympathetic block) can’t be faked- they put stickers on you and watch.

There is no way their diagnosis is clinical. And if it is, their doctors should lose their license. Pain patients already face crazy stigma.

No. 404416

>>404414
Yeah the bone scan I said was possible eventually, not just for a loss in bone density (which doesn’t always happen), but also any scan can eventually show the bones deforming. Claw toes or fingers, limb at a weird angle, etc.

I don’t get how it’s possible to fake to a doctor, unless there’s legit practicing physicians out there that diagnose someone with CRPS with nothing but the patient claiming burning pain. There’s just so many physical symptoms. Also hair and nail growth change. It boggles my mind that there are doctors who would diagnose it with nothing more than just claims of pain, wtf.

I guess the munchies are getting tired of not feeling speshul enough with their Fibro/EDS/GP claims.

No. 404461

File: 1508145012164.png (619.33 KB, 1536x2048, IMG_9608.PNG)


No. 404474

>>404461

Other than pretending to be seriously sick yet competing in gymnastics, for which no sane doctor could sign her off? Other than shaving her head to look more woe is me littlest cancer kid, because people associate bald with seriously ill? Other than lying either about her sporting activities or her health, or perhaps even both? She's totally done nothing wrong.

No. 404475

>>404416

There are plenty of superficial diagnoses where the symptoms are merely attested by the patient. Maybe shown on a photo. And yes, it is possible to induce limb swelling factitiously - we've had a factitious CRPS case during my stint in A&E who has had the diagnosis for YEARS until a clever neurologist saw the ligature marks on her wrist that she used to induce eythematous swelling.

No. 404477

>>404325

In fact, in the beginning, most patients feel a lot worse. Catabolism (the energy expenditure required to break down food) is draining them faster than they can replace. First days on tube feeds make people remarkably grouchy.

No. 404482

>>404410

Ps. interesting paper on CRPS malingerers - note ALL of these patients were dx'd CRPS I despite blanks in the objective evidence https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2917825/

No. 404484

>>404477
Wow. I did not know that. I really wish they'd told me that.

But yeah, it's very strange that all these Munchies start to feel 'so much better' just after a FEW DAYS on feeds. In the Jaquie thread, we were just discussing how she came back from 'severe malnourishment' on a feed rate of 25ml/h. Yes, she actually said that. But if you remember, she also felt "back alive" after ONE NIGHT of TPN. But of course, a permanent tube will help you feel better MUCH faster than that nasal tube they give to normal patients because they actually need nutrients like.. right away and can't wait until they find a doctor who is willing to poke a hole in their body just so they can use those cute tubie pads. I'm sure that must be it. I mean, just like medicine or fluids through a port work better than a normal IV or even.. dare I say the farmacological equivalent of the same drug taken orally? Oral is such a dirty word anyway, don't you agree? Oral sex, oral intake: all naughty and very, very wrong. Better have a clean tube for your nutrients and fluids and save yourself for marriage.

No. 404489

>>404484
For sure. It totally throws your body out of whack. That’s why many patients are hospitalized when starting tube feeds, because there’s a high risk of problems, including refeeding syndrome. And even after the first few days and weeks, it can take months to feel better. I’ve heard that TPN is the same, even taking longer sometimes. And even once you’ve been on a steady tube feeding regime, going down on the rate and/or the amount even for just a day or two will make you feel like shit.

No. 404490

>>404477
And because your body is working harder, and also because your metabolism starts to increase, the first couple days to weeks or months, you can actually lose weight instead of gain it, and there has to be adjustments to the amount.

No. 404493

>>404474
Honestly, I think that she wanted to compete in gymnastics but wasn’t good enough to do the non-disabled ones, so she went with a mild diagnosis she was given (since there’s no way you could do gymnastics with moderate to severe mcas, and definitely not with eds), so she could be in the lower-expectations disability group. And then she shaves her head for pity points and asspats, since none of the illness she claims either cause hair loss or are treated with medications that cause it. It’s actually pretty pathetic, not to mention insulting to people who are actually sick but who aren’t attention whores.

No. 404497

>>404490
Also, if you're gaining weight, your body then needs even more calories to maintain and to gain further. So if you've lost a shitton of weight, you WILL hit a plateau sometime and you will have to increase your rate.

But with the Munchies it seems to be that they have their rate a little higher at first and then lower it. Probably because they only want to gain 3 pounds and not more, which is suspicious in it's own right.

I know your body can lack all sorts of nutrients while still having a normal weight, but when you claim that you haven't been able to keep anything down for weeks or months, you'd expect them to have lost a good 20 pounds if not more. Normal doctors don't stick a permanent tube in your body when you've lost 5 pounds. Unless you've lost a lot more, there is time to try out different meds, diets, liquid shakes etc. In a normal situation, your body can handle losing 5 pounds. If it weren't, you'd be in hospital on tube feeds every time you'd had a stomach bug./[

No. 404500

>>404493

Not WKing but I thought she shaved her hair due to alopecia?

I agree that nobody with EDS should be doing gymnastics, let alone competing,

No. 404501

>>404500
Well, that would actually be a valid reason if it’s true. However, it still doesn’t mean she’s disabled.

No. 404505

>>404501

Yup.

It's important to note that FII is not always inducing an illness de novo, it also includes exacerbating a known condition. So asymptomatic or only borderline pathological hypermobility exacerbated by the physical demands of gymnastics, which are arguably pretty grueling even if you're completely healthy, is a form of FII. Instead of non-glamourously managing your condition and avoiding triggers, she intentionally made herself worse to play the heroic role that Munchies so desire: the tragic hero against the world, the heroic fighter who does [stuff] despite limitations. And she scored big time.

No. 404513

>>404505
>It's important to note that FII is not always inducing an illness de novo, it also includes exacerbating a known condition.

Thank you, I've been meaning to point that out. Sometimes that seems to be forgotten here. There's not just "munchausen" and "genuinely sick but OTT", but it's also very possible to be both genuinely sick and have factitious disorder. Factitious illness can be anything from exaggeration of existing symptoms (having a mild headache and claiming to have mind-splitting power drills in your head) to lying about symptoms that simply aren't there, fiddling with tests to change it's outcome (a famous study found that about 2,7% of kidney stones submitted by patients were pebbles or other artefacts), faking symptoms (like a seizure), self-inducing symptoms or injury or making an existing injury worse (like pulling an already instable shoulder out of joint to make it even more lax, or simply refusing to doing the exercises that will help you) to even dissimulation, which is ignoring symptoms of disease to deliberatly let it get much worse before seeking medical attention.

Basically, if it's done to get attention from medical personnel or people around you because of how sick you are (or because of how brave/good you are despite being sick) it's factitious disorder. And it's quite possible to be actually sick, too. In fact, this is quite common. For example, it's estimated that about 40% of brittle diabetes is factitious in origin. Note that it's not the diabetes that is being faked here, but the fact that the illness doesn't respond well to treatment. Thus making them poor sick people who need attention and special consideration.

No. 404517

File: 1508164140625.jpeg (141.56 KB, 1506x732, image.jpeg)

I don't know how to link videos but chronically vlogging girl just admitted it was miscommunication and she does Not have gastroparesis kek

No. 404520

File: 1508164295396.jpeg (255.21 KB, 1536x1652, image.jpeg)

Whoever left this comment on her gastroparesis video made my day "it's like being told you're a double leg amputee with two working legs" kek

No. 404521

>>404517
Err.. the title of that vid is "misdiagnosed - Everyone makes mistakes". So what was it? Was she misdiagnosed (i.e.: the doctor made a mistake) or did she misunderstand (i.e.: SHE made a mistake)?

No. 404525

>>404521

Here's the vid. Train wreck warning.

No. 404528

>>404525

In this vid she straight up says, "I'm not the type of person to google my symptoms". Bullshit. There's multiple vids in which you say, "I've been doing a lot of research on my condition…"

Which means, for a high school student with no access to medical journals or aggregate websites like EBSCO or LexusNexus, you use google. stfu and stop lying it's despicable trying to cover your ass after you were called out so easily.

No. 404529

I actually watched that video. (Know I shouldn't have, but hey.) The first five minutes she keeps repeating that the nurse miscommunicated and that because she trusts her doctor and never googles her symptoms (guess that means she is 80+ years old, because there are no other people who NEVER google symptoms). I think the point she was making was that the nurse said they were starting her on erythromicin (sp?) and because she was told they would only do that if she had GP, she concluded she has GP because she doesn't Google her symptoms so she could not know that a normal test means she doesn't have it. Something like that. And then she repeats that a few times with the same words in a different order.

Then she goes on saying that people told her a GES is very reliable, and "you may choose to believe that". But she knows people who are completely feeding tube reliant and their test was normal, and nothing is completely accurate.

Well.. it is true that symptoms of GP don't correlate with the test very well. As is, I might add, true for many conditions and tests. But 'she knows people' that rely 100% on their tubes with a normal GES. 1. How many friends IRL does she have with feeding tubes? That's quite a coincidence. Because she doesn't look up her symptoms online, right? So if she knows about other peoples symptoms and tubes, she MUST know them IRL. Sure. 2. It may suprise you, but there are actually OTHER disorders and problems that may necessitate a feeding tube. Crazy, huh? 3. WHO is talking about a feeding tube? O right, she is. Glad to know that's what this is all about.

Then she says it's no ones fault, but it was the nurses' fault. But it's no ones fault. And she talks about how frustrating it is that she doesn't have gastroparesis. (Because she still doesn't have answers, but still.) She is doing silly stuff with her friend and then complains about how she almost passed out while getting up after lying down (girl, that's called orthostatic hypotension and is REALLY common and not abnormal in any shape, way or form - especially in girls your age). She says normally she "never get's this close to passing out". Wait, what? So you claim to have dysautonomia, yet if you get lightheaded when you get up from the bed, that's out of the norm for you??

Aaaand she tells us she had autonomic testing and will get the results in a few weeks. I don't actively follow her, but from what I've seen her, I thought she was claiming POTS? Apparently, she doesn't have a diagnosis yet. Says she has dysautonomia, but not a clear diagnosis. So was she actually told by a doctor she had dysautonomia, or was that another misunderstanding? And how do you know that's un umbrella term and not a real diagnosis if you never Google symptoms?


As I said: don't watch it. Or watch it and don't try to make sense of it, because that will seriously fuck you up.

No. 404530

>>404521

She's blaming it on the nurse miscommunicating it, and keeps repeating that she's a professional and she believed her. Which kinda makes me think… she's not the brightest, so how does she know her doctor is any good? But I digress.

What I really think happened based on my understanding of GI medicine (I'm a GI doc, but deal primarily with interventional medicine), is that her GES came back clear indeed. She was then told she will be prescribed erythro, because 1) erythro is relatively harmless, 2) it does not kill your gut flora as much as many others, 3) it can be given empirically and it may provide symptomatic relief for the ever so tiny group of people who have GP but for some reason once in a blue moon test negative during GES (mostly: people who have mild GP due to some antimuscarinic side effect, but that's another story). I have also heard of motility docs prescribing erythromycin after normal GES to see if there is a psych component (pronounced placebo effect may then reveal an unusual improvement in symptoms, esp. subjective symptoms of nausea). She deduced that if she did not have GP, she would not be getting treatment for GP. In her case, it's perhaps 50% her obsessing over having GP and 50% just not being very bright.

No. 404532

>>404528
Funny, eh? Yet in her last vlog, she says "I did my research, talked to my doctor and I also talked to my support groups" (3 min. mark)

But that "research" totally didn't involve Google, guys.



She uses Bing.

No. 404535

>>404529

If she is not googling her symptoms (doubt it in this day and age), then she is gathering all her medical information from the social media of OTT spoonies.
She is trying to blame the nurse but she never says the nurse said she had GP. More that the nurse said the test results were normal but they were starting her on medication. She heard medication and gave herself the diagnosis. The same way she has already given herself a diagnosis of POTS/dysautonomia even though she hasn't gotten the test results yet (the real reason the doctor didn't provide the school with documentation that she needed half days - because they haven't diagnosed her with half the things she claimed).

It is sad that she seems to be tackling what she thinks are severe medical problems without any parental support. Seems like there is no parent to help her process any of the information. She really wants to be in the spoonie community and so she jumped at what she thought was a diagnosis without really hearing what was being told to her. She has the impulsive mind of a teen.

No. 404536

>>404525
Kek she’s admitting she wanted to have GP

No. 404538

>>404535
Or she doesn’t have support because people are tired of her malingering and refuse to play into it

No. 404539

>>404529

> she doesn't Google her symptoms


One of the first signs of a Munchie taught in med school is a medical background or detailed knowledge of the illness they claim to have, gained usually from the interwebs. So it would be entirely unsurprising to think that she was aware of this and mentions it so often because she really, really does not want to be thought of as a Munchie. Again, this would not be unheard of…

> Then she goes on saying that people told her a GES is very reliable, and "you may choose to believe that". But she knows people who are completely feeding tube reliant and their test was normal, and nothing is completely accurate.


Of course there are, but not for motility indications. For instance, abdominal pain upon eating might be accompanied by a normal GES. As said in a prior comment, she's not the brightest, and she might not understand indications.

Symptom intensity and GES results indeed do not correlate, but having GP and having an abnormal GES correlate very, very tightly - indeed, that's how the GES cut off values were determined: by reference to what the median cutoff point is between asymptomatic and symptomatic patients.

On a different note, it is noticeable that standing up puts her out of breath, and, I assume, quite tachycardic. That is not because she has POTS although one could be forgiven for thinking so: it is because she's obese, deconditioned and lacks the vasomotor fitness required for the (adequate and present) ANS signals to her peripheral blood vessels to be implemented by her vascular system. So the body needs to manage using positive chronotropy (faster heartbeats), causing tachycardia. Symptomatically this is similar to POTS, but in reality, it's plain old morbid obesity.

No. 404540

>>404539
Exactly. So many cows are claiming pots when I’m sure most of them are just deconditioned and severely out of shape

No. 404542

>>404539
And she is getting a wheelchair??
https://www.youtube.com/watch?v=7kFh_ppE6rY

I couldn't bear watching the vid, so I don't know why. But yeah, that's a sure way to mess her body up even further.

No. 404543

>>404535

She does not seem to be very bright and it's safe to assume neither are her parents. Judging from the picture I get, and her deferential attitude towards professionals in her latest vid, she sounds like she's coming from a blue collar family and her psychosocial experiences were largely marked by emotional deprivation. Not entirely unusually, she might recall times of acute health crises as peak times of affection, and came to associate being sick with the pleasant feelings of being loved and tended to. Based on this, she developed a friendship with someone with a chronic illness, then almost sympathetically felt a drive to 'become' sick herself - partly, as Freud would say, with 'cathexis becoming identification' (the emotional energy of affection is discharged by making oneself more similar to the object of one's attention), partly because she believes she will get what she needs if she, too, is sick. I have absolutely no doubt that she knows she is not sick. Her actions are quite manipulative and she is quite consciously twisting facts, so I do doubt that she genuinely believes she's sick. She does, however, know and believe that good things come from being sick - her vlog, her friendship, her fans, affection, time, sympathy - and it is those things that she's pursuing.

No. 404546

>>404513
Though obviously the occasional exaggeration of a symptom is not a whole disorder in and of itself. Most people do it from time to time to get out or work or some prior commitment, or just because. It’s human nature. It’s when it becomes a consistent thing where it turns into a problem.

No. 404550

>>404546

On the other hand, intentional exacerbation (as opposed to exaggeration) of a health issue (intentional meaning the intent here is directed towards worsening one's condition, as opposed to doing something with a disregard as to whether it worsens one's health or not) is always pathological, and that's largely what's happening in Ms Coates' case. It's like someone with a peanut allergy getting a job in a peanut butter factory.

No. 404551

>>404540

Also, it's fantastically easy to fake. Sharply cutting fluid intake is one way to do it, although it will reduce base BP as well. But using certain medications, it can be very convincingly faked, and I am fairly sure many a Munchie has gotten their coveted POTS dx that way. And of course POTS gets you a wheelchair, and boom! you've arrived in the spoonie world.

No. 404555

>>404525

"I don't have gastroparesis… and that's ok…" said in a choked voice near tears

Now, given that she doesn't have GP, wtf exactly are they looking for answers for? Given her situation, I think there's a very clear suggestion that any answers she needs are in the realm of either CD/somatization or FII. Possibly malingering, given her chasing various overt secondary gains (half days at school, a wheelchair, tubes, etc.).

No. 404562

>>404546
Well, as with any psychological disorder, it should only be diagnosed if the symptoms either severely limit someone in their day to day life, or if it causes substantial pain or suffering. Your example is technically not FD but malingering (there is an external motivator) which is not a mental disorder -
just morally questionable. But even if the motivation is internal (to garner sympathy) it is - as you say - a matter of quantity. I distinctly remember that one time when I was about six years old and I came out of my bed when I was supposed to be sleeping because I wanted the attention of my parents. Normally they'd tell me to go back to bed, but I told them my tummy hurt so I got to sit on my mothers lap until I was sleepy and then she brought me back to bed and kissed me tonight.

Good behavior? No, of course not. Factitious behavior? Yeah, sure. Factitious disorder imposed on self? Not in the least. Like you said: it's human nature. I think we all like being cared for and it might be tempting to tell your new friend that during your third year you didn't just write an essay that got you an A+, but you did that while being sick with mono - thus gaining their admiration. If that's something you only do occasionally and you don't create a whole identity out of it or start using crutches at work so people will think you are brave, or if you deliberately make your condition worse because you can't handle being a grown-up, you're probably OK.

No. 404564

File: 1508169635316.jpg (270.04 KB, 1310x1526, ggp1.jpg)

Over on GGP's OTHER Instagram, the one she shares with her best friend, she's suspiciously excited to be labelled a Fall Risk during testing.

No. 404567

>>404551
This is why most neurologists and other doctors who treat pots want you to be hydrated for the testing, and why they do a range of autonomic testing before confirming a pots diagnosis. There’s also medications that can affect the testing, and you have to be off of them for up to ten days before the tests. Of course not all doctors do that, and not all of them do tests beyond the tilt table. And the tilt table test is very, very easy to manipulate. Hopefully most doctors don’t automatically jump to wheelchairs (which is not good for pots at all), but munchies are unfortunate examples of this not being the case

No. 404570

>>404562
Exactly, and that’s was my point in trying to respond to that other anon. Attention seeking behaviours happen and are not automatically FII like they were saying. I’m sure plenty of people have said they had a killer headache when it was “mild” or “moderate” (and don’t get me started on subjectivity). Or there are days that people will say they’re feel so ill that they can’t get out of bed but they probably can. There’s so much more that’s goes into true FII. Everyone occasionally wants some admiration or attention, but it’s a problem and likely more of FII if there is significant gain or it happens more frequently. I guess it’s a fine line but some of these peeps are pretty obvious (like Coates doing things that bring on symptoms [obviously some EDSers with mild EDS can still participate in gymnastics / sports and some ignorant or negligent doctors will allow it (had this happen), but a smart person not wanting to damage their body will stop when it hurts]). And in Coates’s case, competing with MCAS is walking a dangerous and stupid line knowing EIA is very common.

No. 404572

>>404564
It’s not that hard. If you say you’re dizzy (if you’re actually dizzy or not), they’d rather slap a fall risk on you than risk it. Dehydration can easily make it look like you’re a risk, or if you seem to have problems walking, or if you just had anesthesia. It’s really nothing special.

No. 404573

>>404564
You get labeled fall risk if you have even mildly fallen in the last 6 mo, get dizzy, or use a mobility aid at my hospital. Not uncommon in someone who is overweight and uses a rollator. It’s not a “special” marking at all…

No. 404575

>>404570
>Exactly, and that’s was my point in trying to respond to that other anon.

Lol, I was that anon. But I should've been more specific. I wrote: "if it's done for attention" but I meant: "if it's done for attention AND reaches the 'diagnostic threshold' (so to say) it's factitious disorder". Just like being moody or sad doesn't make you depressed.

But my point was that there is a whole range of behaviours that can be factitious disorder. It's not just making shit up or self-inducing symptoms, but doing the opposite you should do to help your symptoms or a whole lot of other things can be FD as well. It's the motivation that counts: if you don't take your meds because you're depressed and can't be bothered or even are actively wanting to kill yourself it's not FD. If you don't take them because you are selling them on the streets, it's not FD. If you're not taking them because you can't stand the side effects: not FD. If you are not taking them because it makes you sicker and you want to be sick because that gets you attention from health professionals and/or the love and admiration of your family members and friends, THEN it is FD. And if you don't take them because you want to be sick to get out of dinner with the in-laws, it's malingering, of course.

No. 404579

>>404575
YES, yes, yes. Sorry. I must have misunderstood your original post and didn’t connect you to the orginal. But that’s definitely more clear.

No. 404599

Out of curiosity to help me understand some of these spoonies better, how could they even be Munchies if FII cannot be diagnosed with any other mental disorder?

The ones with BPD will crave attention no matter how they get it because of BPD, the ones with anxiety disorders often obsess over their illnesses and symptoms because of the anxiety, a lot of depressed people feel the need for comfort by others even if it’s not for the depression, and people with psychosis often believe they are sick when they are not.

So where does one mental illness stop and get replaced with FII? Motivation? I often wonder if some of our beloved “munchies” fall into the “other mental disorder” category and aren’t trying to gain anything but have some other driving mental disorder causing the hyperfocus? Quite clearly we have the ones where it’s obvious but there’s have been some people where it’s a very questionable line.

(sorry if this was blogging, I really don’t know if it is – I just want to understand the people and disorder in this topic better than Google)

No. 404607

>>404599
>Out of curiosity to help me understand some of these spoonies better, how could they even be Munchies if FII cannot be diagnosed with any other mental disorder?

Who says it can't? It's pretty common for someone with FD/FII to have Borderline, for example. And it's perfectly possible to have other mental conditions, as well.

Or do I not quite understand your question?

No. 404608

>>404595
It's both FD, actually. Though I think exaggeration is more common among people who don't have FD. And once you start fabricating symptoms, it turns pathological more quickly. But it all can be a part of FD.

No. 404609

>>404607
The true diagnostic criteria of FII excludes the presence of any other mental disorder.

No. 404622

>>404609
>The true diagnostic criteria of FII excludes the presence of any other mental disorder.
Not as I learned them (DSM IV/IV-TR). What criteria say that?


(BTW: I know there has been compains about medfagging and I assume that includes psychfagging. But on the other hand: if you can't talk about the definition of factitious disorder in a thread about factitious disorder.. where can one? But please, do shut me/us up if it annoys you.)

No. 404632

>>404622
Never mind, found it

ICD-10:

>C. Most commonly used exclusion criteria: absence of a confirmed physical or mental disorder, which could explain the symptoms.


As with the DSM, exclusion is other disorder that better explain the symptoms. It says not "exclusion of any other disorder", but "exclusion of other disorder which could explain the symptoms. So is someone is starving themselves because they feel they are fat while they are not and they fit criteria for anorexia nervosa, it's not factitious disorder if they vomit, but it's anorexia. Now vomiting in anorexia is motivated differently than in FD, but take BPD. As with FD/FII, patients want attention. Feeling empty inside is even one of the BPD criteria. But faking symptoms for attention is not. So if someone is feigning being unable to walk, that goes beyond the behavior we normally see in BPD, so the patient has both BPD and FD. With self-harm behavior the line may be more thin a times, but again it comes down to motivation. While some people with Borderline self-harm because of their internal pain for which they have no other way to deal, there is a subset of BPD patients who use self-harm to manipulate others. So it becomes a matter of quantity and of motivation. Does a person self-harm to avoid being left alone? That is consistent with a severe form of BPD in a patient who has a poor grasp of their condition. Do they self-harm because they want attention from a doctor and to show how severe their BPD is and is this maybe even more common than doing it to prevent being left alone or manipulate their loved ones into certain actions? Then I would consider an additional diagnosis of FD.

No. 404634

>>404632
Also, please: I don't mean to shit on BPD patients, especially those who are trying to get a handle on their very complex condition. It's just an example; as I said, a certain subset of BPD patients can be very manipulative.

No. 404647

any doctor worth their salt wouldn't take these lists of complaints from borderline all that seriously if they were presenting with them over and over again after tests ruled everything out. but that's not fair to those with bpd that don't malinger and actually need help. doctors really have such a shit time differentiating and i feel for the doctor anons here that have to go with their gut and hope they're not turning away a truly sick person.

No. 404660

>>404647

As a physician, you don't have to think a particular way, but there are routes you CANNOT go down on. For example, you cannot assume that an African-American male having neurological symptoms is drug related, or that an Asian college kid displaying agitation is probably on illicitly obtained amphetamines - even if statistically, on a large population, that would be more likely than in other populations (not saying it is - these are just random examples). Equally, considering BPD when assessing the legitimacy of self-reported complaints is usually not a relevant characteristic because statistically, most patients with BPD do not lie, although most lying patients do have BPD.

No. 404666

>>404647

Oops it sent before I was finished, sorry. Cont. from >>404660

Anyway, as a result, we don't send them away. We'd rather CYA and overtreat, knowing that if they do come to harm due to that, we can point at the statements they gave, rather than trying to fly by our guts and possibly not treat someone with a severe illness because we didn't believe them. Every doctor's nightmare is turning away a patient who would have deserved treatment, who then comes to harm.

Of course, that doesn't mean we're not trying to ascertain if they're full of crap. There are things we can do to decrease the risk, e.g. we can use the least invasive treatments, we can proceed stepwise and we can require additional diagnostics before more serious interventions such as invasive and risky surgery.

The problem with Munchies is that if it can be faked, they know how to. They're internet savvy, they know what we look for to filter them out and they're sadly good manipulators, as many with BPD are (whether they're manipulative or not). Doctors, on the other hand, are sometimes a little autistic, often not very sharp on the uptake as to whether a certain person is lying to them or not, and easier to dupe than one would think.

What IS shocking is how many of these spoonies, who got very very invasive treatment based on mainly easily influenceable tests plus subjective symptoms, have extremely colourful mental health histories. I won't discriminate against a patient with BPD, but I will double triple check anything they tell me - I usually ask if I can talk to their previous treating physicians, and see how they react. Some flat out refuse to give permission, which is a warning sign, others give a BS explanation ('Dr. X was prejudiced against me because of my BPD'), and every once in a while they think I'm bluffing and when I call them, it turns out the patient has flat out fabricated previous lab reports and findings! It does definitely add a sort of excitement to our work that I truly feel we could do without, but as long as these people are getting their precious asspats from the toys for which we are the gatekeepers, this won't change.

I am convinced that the way to deal with this is to treat wheelchairs and tubes and all those Munchie toys as elective surgeries. If they want one, they can have one if they give consent, no questions asked. At least that way, they won't lie and they'll pay for it. Can't pay? Don't Munchie. It's of course detrimental for them and a complete contravention of 'do no harm', but what powers do we have to stop a patient who insists on forcing us to do harm to them because they want to keep up with the Munchies?

No. 404675

>>404525
I made it halfway through before I could finish and that was a feat in its own right- hell I deserve some damn asspats! Seriously though I can’t watch these munchies vlogs. Honestly I want to so badly so I could appreciate the full kek but they are some of the most insufferable people and can prattle on about nothing for an extended period of time. As others have previously remarked I cannot stand this “GD warrior shite!” No you are not a warrior: you don’t even have a problem (in this munchie’s case it’s delayed gastric emptying, which she clearly desperately wants,) and her GES was absolutely normal so they’re isn’t even a “weakening” or I’m sorry, “paralysis,” as the munchies prefer, and seems legitimately down! Would she prefer severe gastric motility? I will never understand how they’ll bitch until they get their coveted toy and then bitch about how it “hurts” or “isn’t working as well anymore.” Nor have I ever seen such reactions worthy of a higher score on the Beck Depression Inventory when they aren’t diagnosed with said disorder JFC! The insanity, the high key insanity!

No. 404682

>>404675

Because it's an addiction. It fills a gap in their lives, but only temporarily, kinda like drugs. And once they get it, they'll eventually need more. They get their coveted tube, they'll start hungering for a wheelchair. They get that, they'll want oxygen. And so on. It's never enough, and the ride never ends.

No. 404692

>>404532
Rofl at bing. Tip of the hat anon.

Something I’ll never understand is how it’s okay with their parents if they’re “not well enough” for school but they’re “well enough” to attend sleepovers, bowling, and whatever else. Granted my parents are pretty old school and both are in medicine so I wasn’t allowed to just “take the day off“ so if I stayed home from school I was legitimately sick, but on the rarest of events where my fever would go down by the afternoon or I’d stop coughing/vomiting (from whatever at the time “typical kid virus/flu” hit,) even if I felt better I wasn’t allowed to go out cuz my mom said “if I was too sick for school I was too sick to spend time with my friends.” Not to agree with my mom <gasp> but she does have a point and another thing that bothers the crap out of me with all these Spoonie s is they want all of these extra accommodations but they don’t even do the work half the time so why even bother getting the documentation to prove you have X disorder? They’re always all “so exhausted” but yet have all the time in the world for blogging, editing (even if minor,) doing crafts, writing pen pals, and whatever other “Spoonie fad” is en vogue ATM but don’t have enough to finish their work and study. Sage for rage and relevant context.

No. 404693

File: 1508184074234.jpeg (188.92 KB, 750x563, F89AC5CA-8EFB-4E27-8BBD-A0CA25…)

bendy is drunk once again (claims she only drinks on fridays and doesn’t get drunk often but today is monday and we’ve known she’s drunk at least 3x since we started discussing her). how does this girl not die from liver or kidney failure drinking with her supposed conditions and medications?

and she’s brought the bad feelings about her past assault on herself by posting in detail about it on her blog? maybe if you can’t handle thinking about it don’t add to your thoughts by explaining it to the world?!

No. 404695

>>404692
Are any Instagram spoonies really good at / successful at anything?

No. 404698

>>404564
As most of you know anyone can be labeled a “fall risk,” you just have to tell them you are and you’ll get that coveted intake bracelet. I’ve only been following the posts here but it seems that GGP has always posted from Mass General; while I work at another hospital in the area, a friend’s an ER nurse at Mass Gen, and from what I understand they’re much kinder to frequent flyers than we are. If you are “recognized” as a frequent flier at either BWH or BI you generally get a bed in the hallway until psych comes (assuming they haven’t left before that) after huffing and puffing cuz a GSW or cardiac pt was being worked on even though she came first (how tf dare they?)

No. 404699

>>404695
circlejerking?

No. 404701

>>404692

Because if you are convinced your child is sick (which is preferable to 's/he is a manipulative shithead'), it's like losing a child while still having them there in your life. So you settle for any small glimpses of that kid you knew returning, even if it's just for a few moments. You see this with legitimately sick children, as well as with Munchies. My wife is a pediatrician (hospitalist) and she says she has seen maybe 2-3 instances in her whole career when parents of sick kids insisted on them doing homework in hospital according to their abilities - even if they're usually advised to do that, as it restores an important aspect of normalcy to the child in the long run. But in the short term, you do not want to fight with your sick child, and even non-Munchie sick kids know how to abuse the situation. It's natural. Plus kids are a little sociopathic by nature.

Whether they're playing along or are unwitting victims (something often discussed on spoonie message boards is how to shut one's own parents out of one's diagnostic or treatment process as far as one can, which above the age of 14 most patients can do pretty well), parents respond instinctively to their sick children doing something they seem to enjoy.

No. 404710

>>404567
Yea I think so. Can I get a psychfag over here cuz it’s been awhile? The 4 D’s (danger, deviance, distress, and dysfunction(in my life or others)) determine if there’s a problem (i.e., I have spent so much time googling symptoms to assert I have X disorder I don’t have time for my studies, etc.,) v. the “occasional malingering” for some external gain (i.e., I’ve been working 80 hour weeks and after 2 months I’m just “too exhausted to get out of bed” and take the day off.) In the first example I, whether I have insight or not, am causing significant distress in my life so there’s a problem but in the latter, I’m fairly certain I “could’ve gotten out of bed” but was exhausted so I justified playing hookey because of the number of hours worked. Am I correct on that or splitting hairs? Thanks in advance.

No. 404714

>>404695

If they were, they wouldn't be Munchies. Munchieing takes the place of true accomplishments, helping themselves to explain why they're failures.

There are some who managed to capitalize on Munchieing, such as Lucy Watts, who managed to parlay her "illness" into a fucking MBE and an association with the internatoinal pediatric palliative association, by pretending to be terminal for the best 5 years or so. And recently, Paige "Leaky Gut" Patching managed to munch out a 'child of courage' award. It does indeed take courage to list SIBO and leaky gut as a serious chronic illness, or to pretend you have MS and NMO, then MS only,… and so on.

But if you're asking whether the cure for cancer will be developed by an Instagram spoonie or whether any of them will make great art… the answer is nope. There are talented scientists, great artists and good people with chronic illnesses who work hard to overcome their limitations. Many have tried to give back - I know for me (sorry for the selfblog) going into medicine with a heavy research component was a way to give back and help others because I knew what chronic illness as a child was like. But those people are too busy being sick and still getting shit done to whine about their stuff on The Mighty or Instagram their latest tube.

No. 404718

What's wrong with her eyes though? She looks like she's learning disabled. I don't think she's really got munchausens, probably hypochrondria and health anxiety but she doesn't strike me as munch.

No. 404720

>>404718

She claims it's aniridia, but I don't know - not an ophthalmologist but I've only seen traumatic aniridia that did not cause ptosis. At the same time, aniridia tends to go with Wilms tumours and MR as WGAS syndrome. She does not seem to have MR per se, though. She's just not very bright.

No. 404722

>>404714
Yes Dr! This, this, and more this! Chronically ill people who work <eegads indeed> truly exist and usually deplete most of their energy between their legitimate illness and working; they don’t have all this extra time for crafting, always vlogging, blogging about every symptom like it’s a severe illness (i.e., chronic bronchitis and chronic diarrhea, etc.,) and generally they’ve used their energy constructively. Conversely we’re blessed with these munchie asshats, who not only cause problems for actual pts and Dr’s, but see no problem with draining resources actual sick people could have used, and yes munchies, we see you: we know you read here cuz most of you seemingly “adjust” your symptoms/illness rather quickly as a result of something pointed out here by someone in medfaggotry (cuz that’s not a red flag whatsoever.)

No. 404731

File: 1508188721777.png (226.63 KB, 1316x1746, IMG_0411.PNG)

Oh look who doesn't like her tubie.

"The greatest tragedy in life is coveting something for the longest time… and attaining it."

No. 404754

>>404720
To me, she honestly just looks stoned 24/7 and a good cover up is blaming it on a disorder. She even sounds stoned all the time.

No. 404761

>>404695
a couple of the actually sick "spoonies" are excellent writers but none of the munchies seem to be good at anything in particular

No. 404767

>>404722
Maybe I’m just an optimist but I still feel like there are a few chronically ill people who are successful in life who have taken to blogging or what have you in an attempt at finding a useful coping mechanism. So I do feel like there are some successful Insta / YouTube spoonies but that’s just me and it’s far and few between

No. 404768

>>404720

She claims it's a behavioral mechanism she's adopted to protect her eyes from excessive light. w/e It's just as likely she does it to call attention to herself.

No. 404781

>>404774

Ex husband??? Wait, are we talking about the same cow? The girl who is twentysomething and still in high school… was… married and divorced?

No. 404785

>>404767
Of course there’s always the exception (idk anyone but there has to be some who are actually ill and as you said used blogging as therapy. There’s also people who lack any formal training in criminal justice, but have an affinity for informative murder porn, and have turned their blogging about crime into a profitable business.

I think the problem is that the McSpoonies see the chronically ill writing well so they assume since they’re “chronically ill” too they should also take to it, however the chronically ill person didn’t choose their situation, and for the most part they make the best out of whatever situation they’re dealt with and adapt to a lot of shite; they didn’t put their life on pause when they got their Dx/ and continued to mature v. the McSpoonies who as soon as they got their diagnose(s) they put everything else on pause and put all their energy and focus into their “illness” and being sick. Being sick is their identity; it’s all they know and because they’ve made it the sole focus of their lives, they’re emotionally and academically stunted.

No. 404786

>>404761
Yeah, I think anyone who is primarily obsessed with being a spoonie (or is really a munchie or driven by other mental illness) probably doesn't succeed at much in the real world or have genuine talents, but there are some people on the fringes of the IG community who are talented.

No. 404788

>>404785

They're excellent at lying to us :)

No, really. Munchieing is an addiction, and it swallows up the addict's life. There's precious little you have time for when your life is all about looking up your next toy or your next diagnosis. Just because the addiction of these people is endogenous (dopamine from rewards of their activities, sympathy, etc.) doesn't make them any less a bunch of junkies.

No. 404796

>>404786

It doesn't matter how talented you are. Talent never got anyone anywhere. You need to hone your skill and work on your craft in every field, and if your life is about googling diagnoses and daydreaming about tubes, you can't do that.

No. 404852

File: 1508202502841.png (329.39 KB, 750x1334, CCFFED62-5F96-42D7-81E6-8B68AC…)

Could be legit sick but has a long list of things…

Does it piss anyone else off when people claim (or doctors have diagnosed) RA along with EDS without genetic confirmation? RA and many other autoimmune issues cause VERY similar symptoms to EDS including hypermobility. hEDS shouldn’t be diagnosed with other illnesses that cause hypermobility because it is soooo unlikely that hEDS would happen with some completely different disorder that also causes hypermobility (rare for other types of EDS to be paired with other things too but at least you can have more substantial, eveidence based non-subjective proof there)

No. 404853

>>404852
Can you have endo AND pcos? isn’t at least one of them a diagnosis of exclusion?

No. 404854

>>404852

I have never heard of a tumor recurrence being 'masked by organs'. That's what freakin' PET scans and MRIs are for - tumor tissue can be fairly well differentiated, and where the question is if someone is having a relapse or not of ovarian cancer, the whole 'they're guessing I have another but whatever' attitude sounds highly dubious.

No. 404856

>>404852

She had… a ten pound ovarian tumor? I'm sorry, the pelvic region isn't exactly like the gut where an expanding tumor is masked. It sounds like it would have compressed like fucking everything. Nerves, the bladder, god knows what. God this woman is crazy.

No. 404857

File: 1508203047870.jpg (26.42 KB, 235x235, IMG_0412.JPG)

>>404852

Safe to say I'm not doubting the PCOS dx. I do doubt whether EDS can be ddx'd at her weight from ligaments stretched to tearing point by her weight.

No. 404858

>>404857

Oddly, while she is very apparently morbidly obese, her weight gain does not have the typical steroid cheeks that happens with the high dose prednisone or dexamethasone administered with chemotherapy. No, this is a legit 'freshman fifteen' (gained by ingesting the daily nutritional needs of fifteen freshmen at once).

No. 404862

>>404856

There have been massive multicystic masses removed from ovaries, some over 150lbs (yes, one hundred and fifty lbs). These, however, are benign. Ovarian cancer is an asshole and I cannot imagine it growing to ten lbs without riddling you with mets all over the fucking place. On the other hand, she could have had a benign ovarian cyst, which is almost like a mass, which is almost like a tumour, which is almost like cancer, so basically, or so she would say, she had cancer. No, she probably didn't.

No. 404863

>>404852

Ps. Just some explanatory medfagging: ovaries weigh about 10 grams tops in healthy people. Ovarian cancer expands the ovary to about 4-10cm longest longitudinal axis length, but that's never going to be 10lbs in weight. Ovarian cysts, on the other hand, can be arbitrarily big and because they're not malignant, they're unlikely to kill you before they have the chance to grow fat. Importantly, ovarian cysts cannot become cancerous unlike some benign tumours.

Something's not right with her story.

No. 404866

>>404863

Yeah this is why I was stumped. I've heard of beastly large ovarian benign cysts (though 150lbs is the largest I've heard augh), and I'm going through her blog like a fucking moron trying to find where she actually talks about anything other than EDS and eating disorders… Nope.

You'd think a cancer scare would be something she checks on annually, but I guess that part of her lie slipped past her.

No. 404868

File: 1508204182074.jpg (57.88 KB, 539x546, IMG_0413.JPG)

>>404866

Yup. Her Facebook profile pic has fibro-freakin'-myalgia awareness on it. Not ovarian cancer, which must have been, if it did happen, a brush with death. No, fibrofuckingmyalgia it is.

Have a hard time believing the cancer angle on this one.

No. 404869

>>404868

What's her facebook handle, please?

No. 404871

>>404868
Yeah, you would think cancer would be your top priority since there is a chance of recovery. But I guess because that COULD be cured it won’t get asspats in her mind.

The whole thing just seems strange.

No. 404872

>>404869
Jami Gettings is her name. She’s one of the first to pop up it seems.

No. 404873

Hahaha holy shit, i've been reading this thread for months and literally just made the connection that i've totally seen mcas mcgymnast on a "medical mysteries" rare illness show here in the uk about a year ago. I remember her talking about the drs telling her mum to say goodbye to her and her showing off her warrior beads. hhhaaaaahahaha holy shit.

No. 404874

>>404873

Dude. She's allergic… to… her… tears.

How exactly that works and how her tear ducts and tear gland cells haven't been destroyed (there IS an autoimmune illness involving that, but it looks different) is a mystery.

If she were any more full of crap, I'd be referring her for an ileostomy.

No. 404875

File: 1508204798621.png (247.97 KB, 1403x1104, IMG_3226.PNG)


No. 404880

>>404874
It is completely possible to be allergic to tears but it usually involves being allergic to ALL water and just causes rashes. Her puffy eyes are so normal with tears it’s laughable she calls it an allergy.

There is also a possibility to have mast cell reactions to tears in some cases of MCAS, but it’s paired with the same reaction to your own sweat (IT SUCKS), is caused by different salts/“toxins” being released with the liquids, and is not a true allergy; it causes rashes and extreme itching but is just a mast cell trigger (I can’t remember how my doc explained the difference between actual allergic reactions and MCAS reactions).

No. 404893

>>404857
And most people who claim eds but don’t have it but still go to doctors end up getting diagnosed with fibro, since it’s another of those diagnosed-by-exclusion illnesses. But RA, while causing general joint pain, has stiffness, redness, and swelling that eds doesn’t have. 95% of eds pain is completely invisible, which is why cows think it’s easy to fake (good luck proofing the other diagnosis criteria if you don’t have it, but that’s beside the point). But if anything, her diagnosis is morbid obesity, and she’d most likely have far fewer if no health issues if she lost weight. I’m sure her weight has also led to severe deconditioning, and hello increased joint flexibility and orthostatic symptoms.

No. 404894

>>404880
Omg my eyes get red and puffy when I cry, at I gonna die you gyez?? So scared. Please donate.
Kek. These munchies will use literally any little thing to act like they are the most specialist sick person ever. Water allergies, true ones, are incredibly, incredibly rare, and devastating. The real sufferers, like most people who are seriously ill, aren’t out there whoring for attention.

No. 404920


No. 404921

>>404920

oh, her hair fell out due to "stress and trauma". But conveniently, not her brows or eyelashes..

No. 404924

>>404852
>>404852
Please forgive my blogging but it meets the context and considering it took 4 years of pain, scans, different Meds like plaquinel, roids, and methotrexate (which didn’t work cuz I didn’t have RA,) and other BS before finally one Dr suggested CRPS cuz of the redness, white, swelling, etc., and was put on lyrica (a godsend,) and another Dr suggested I get tested for EDS at the genetics lab and was actually diagnosed so yea it pisses the absolute f**k out of me. If they even saw what my hands can look like from the CRPS they’d shit themselves and my hips sublux often but I’m not bitching (okay except for now and my apoligies but they annoy the hell out of me,) 24/7 and listing every GD symptom I’ve ever experienced. Hell why don’t they write down shite like the flu, constipation, and inability to regulate body temp kek? Sorry but sage for rage- I get they can claim certain illnesses and can even fake symptoms to appear to have a certain disorder but when a diagnosis is purely congenital and you haven’t been tested for said disorder, how tf can you feel okay saying you have it? That’s like saying I’m sure I have breast cancer but I’ve never had a mammogram.

No. 404925

>>404857
Obviously being heavy makes your joints, ligaments, tendons, etc work harder so how can you decipher between even contemplating an EDS Dx/ cuz weight has to play a role, yes? Some medfag help me out here please.

No. 404927

>>404868
JFC f**king gag me with a spoon kek

No. 404934

>>404925

Hi, EDS-fag not medfag here. For an EDS dx in someone her size, the Beighton score (hypermobility in various joints) wouldn't be possible to test for in all joints (I imagine her size makes touching hands to the floor an impossibility for example). But she'd also need a history of pain in multiple joints (with no other cause like being obese putting strain on them!), poor healing, rectal or uterine prolapse and subluxations/dislocations.

No. 404943

>>404934
And don’t forget that they’re looking more at family history for diagnosing hEDS, because it’s super uncommon to not have at least a parent with it (it’s a dominant inheritance pattern, most likely involving multiple genes, and therefore very, very unlikely to occur through spontaneous mutation, unlike the other types of eds). There are so many factors that you have to have for it to actually be heds and not just normal, common (and benign) hypermobility. My guess is that many of the cows that claim eds don’t have it.

No. 404944

>>404943
And skin involvement. It’s not eds of any kind of your skin’s not affected in some way.

No. 404947

>>404943

I'm guessing a lot of docs who diagnose it are going on hypermobility alone. And they're not diagnosing it, they're speculating, and the cows can add a "serious illness" to their list because that's basically the same as diagnosis, right?

No. 404948

>>404934
And not poor healing like it takes just a little longer than the average person (there’s many factors for that, including poor diet and low blood cells of some type or something like that). EDS slow healing can be months, like 4 months for tiny skin biopsies, 6+ months for surgery, and any stitches ripping out again and again and leaving nasty scars.

No. 404949

>>404947
Totally. Most doctors read a paragraph or two about it in med school, but have never had an eds patient. So a person who’s hypermobile comes in and insists they have eds; the doctor sees that they’re hypermobile, and person (who if they’re a munchie has read about eds symptoms online) tells the doctor all the perfect eds symptoms they have (many of which are invisible). A good doctor refers them to someone who has experience with eds and can pick out a real case from benign joint hypermobility, but I’m sure lots of doctors just go by the hypermobility and the patient’s self-reported symptoms and go, “yeah, looks like eds”. And the munchie leaves so excited to have a rare(ish) disease, when really they don’t have it.

No. 404992

>>404873

> say goodbye to her


It is a frequent misunderstanding that this actually happens. It does… on tv. In reality, doctors never tell you to 'say your farewells' to a sick relative.

One, if you are the caregiver, as the parents in this case would be, there is usually a conference where the doctors discuss that they're out of options and they will be initiating the Liverpool Pathway. Even in an emergency, doctors never use the term 'say your goodbyes'. If it looks like a longer drawn out process, the phrase we use is 'spend some quality time together'. If it looks like a fast decline, then simply 'you may wish to spend some time together' or something. The point being: BS!!!

No. 405000

Have you ever considered that Natasha's telling the truth and the media have just twisted her words?

No. 405002

Also, looking back on her photos she did loose her eyebrows.

No. 405006

Do you not think she's a bit fat to be a good gymnast anyway?

No. 405008

>>405000
This is a very fair point. I think Natasha is awful in how she exaggerates and dramatises everything, but we can't go by anything reported in the media and assume it's what she said herself.

No. 405019

>>405000

Ever been profiled in the media? In print media at least, you get to go through the proof yourself, and make corrections. My theory is that if she has been misunderstood, she has just found it way too appealing to her Munchie self-perception to correct.

No. 405021

>>405019
Yes. No, you do not routinely get to proof it.

No. 405023

Actually I have and they took things I said way out of context.

Plus, you don’t proof the daily mail.

I think I saw on her Facebook that the medical mysteries aired over a year after they filmed so I guess things changed in that time.

I don’t think Natasha is a munchie, I just think she doesn’t handle herself very well.

No. 405033

>>405019

Yes, and no. It is wise to stipulate with the author beforehand that you will only participate if you are able to see the relevant parts of the piece before it is published and make changes if necessary, but it is not standard practice.

No. 405046

>>405023
>Actually I have and they took things I said way out of context.

Can second that. It's very easy to be misportrayed in the media, both written and on TV/radio. (And no, you don't always get to proofread or see before it airs. In fact, I've never encountered that.)

BUT this girl has her own YT channel as well. I have only seen a part of one video, and I think maybe she's not Munchie, but she is OTT.

No. 405052

What’s her YT like?

No. 405066

>>405046

Ok then, perhaps my experience was just unusually fortunate, but I always got to proof my parts of the final article. Oh well.

At the same time, why exactly would one want to air their medical dirty laundry in the media, even in connection with her gymnastics? I mean, these 'gawk at my super rare medical story written for people whose rarest medical experience is the flu', inevitably overusing words like brave and courageous, don't raise any awareness and what they do is freakishly distorted. You've got to be some degree of Munchie or OTT to even collaborate on one of these, especially so if you're pitching it (crrrringe!).

Also, I don't see the dividing line drawn between OTT and Munchie. Exaggerating your health conditions (OTT) is part of FII…

No. 405071

Her assistance dog is legit so her condition has to be because of all the Doctors letters and testing that goes into getting the one she has.

No. 405072

>>405066
>Also, I don't see the dividing line drawn between OTT and Munchie. Exaggerating your health conditions (OTT) is part of FII…

True, I think on here it's more used in a way to distinguish between "not sick/not as sick as they say they are" and "actually sick, but oversharing and much emphasis on their so called bravery despite being sick."

At least, that's how I interpret it. There's different ways I can tell you that I was sick with the flu last week. I can tell you I was sick with the flu last week and did some work from home on the days I felt a bit better. OR I can tell you that I was in bed for seven days straight, had a temperature of 104, was so weak that I couldn't even sit up straight and then my boss called me to ask if I could maybe work from home and finish the final analysis while I was coughing my lungs up and everything got black before my eyes when I even tried to sit up straight, and my SO even had to carry me to the bathroom three(!) times and, but despite that I managed to finish the analysis AND proofread an article for a colleague and next week I will be back at work, because that's just who I am.

(Before anyone says it: NOT blogging, just making up shit to give an example.)


But I also think the distinction could be people who actually have FD, versus people who probably are pretty normal IRL, but exaggerate only/mainly online (and are actually sick with the disease they say they have).

No. 405075

>>405071
>Her assistance dog is legit so her condition has to be because of all the Doctors letters and testing that goes into getting the one she has.

Who are you referring to? I don't know, so don't know where they live. But I think it's pretty clear if you're reading here that at least in the US, it is very easy to get a service dog if you aren't even sick. There is no registry at the national level and most states don't even have one, so ALL your dog needs to be to pass of as a service dog is well behaved. Plus, you must be able to mention a task it's been trained for. Although I respect people for being able to train their dog at all (I don't think I could do it, but I'm more of a cat person anyway) I don't think that having a service dog is any indication on the genuineness of an illness. In fact, at least on social media, I'm afraid the correlation tends to go the other way.

No. 405079

She’s british right?

No. 405083

>>405071
ah yes, 'munchie is legit, we must acknowledge her legitimacy'. we've been through this before, you know.

No. 405090

Do they do assistance dogs for munchies? Hahahaha

She’s even got his own IG page for him. I think it’s SirenDoodle or something stupid like that

No. 405102

>>405066
I still think that even if she is actually sick, she’s definitely milking it for the gymnastics. I can understand someone with a physical problem that affects movement, such as cerebral palsy or a limb amputation or Down syndrome (very low muscle tone), needing to be in the disibility category, but MCAS doesn’t affect those things. So she’s using her illness as an excuse to why she’s not good enough to compete with the “normal” gymnasts. (I’m throwing out the eds diagnosis, because it would be impossible for her to have that and do gymnastics at her level. Yes she’s not olympic caliber, but she’s still better than many, many people). It’s not really fair to people with mobility challenges to have to compete with someone who is physically capable.

No. 405103

>>405071

Ok, let's mull over that word 'legit' for a second.

There are three patients in my (hypothetical) waiting room. All carry a diagnosis of, say, GP.


Pt 1 was dx'd by her GP based on almost solely clinical findings and a cursory GES that was borderline. She used to visit the same GP all her life, and so the GP took everything at face value.

Pt 2 was diagnosed by a specialist at a national referral hospital for GI issues. "You don't have to do a GES", she told the consultant. "I just had one done." She produces a recent GES result that shows significantly slowed gastric emptying. Little does the consultant know that she faked that result (yes, you can fake the test itself, but you can also photoshop a fake report, and we cannot possibly verify every single report).

Pt 3 visits the same national referral hospital. She takes [drug name omitted], an OTC antimuscarinic that slows her gastric transit to a halt. She tests positive.

From a structural medical perspective, all of these have a legit dx of GP - all issued by a real, legitimate doctor. Yet none of them actually have GP.

Which of them would you have me take at face value, and why, pray tell? I think they can all get fucked, but according to this theory, if someone has a doctor's letter stating a dx, we should take that as sacred fact. Because doctors never make mistakes, the diagnostic process is 100% bulletproof and so on.

Additionally, a previous dx can often be used to bolster the position of a patient. You cheat your way to a dx, you show it to your GP and all your doctors, they of course take it at face value - especially if they're juniors and the letter is signed by a senior consultant at a national CoE for GI issues. Give it a few years and you will have dozens of letters that reiterate your diagnosis. Nobody will even want to go back to whether your initial test was accurate or even real - again, we don't have the time and on the grand scheme of things, people have managed to factitiously get mastectomies (!!!!!!!), and if they can cheat all the tests it takes to get irreversible, radical, major surgery, then lying to us should be a piece of cake, right?

Bottom line: 'no.'

No. 405105

>>405102

She has EDS too, so assuming she's legit, she either shouldn't compete at all and she is compounding her own illness with it (=> FII warning sign) or she is faking her mobility issues to be able to compete as the one-eyed man in the kingdom of the blind.

No. 405109

>>405105
Gymnastics would be prohibitively painful in eds. Eds causes subluxations from things like taking off a shirt, or walking, or writing. And that’s daily, after months of physical therapy. There is no way she’d be able to do all those things that gymnasts do. She could have joint hypermobility, sure, I’m assuming lots of gymnasts do. But eds, no way. Even with how beat up their skin gets from the bars and floor, with eds and it’s weak skin and slow healing, she’s be covered in sores.

No. 405111

I just found a post by her and she doesn't claim to have EDS, she says she has 'joint hypermobility syndrome' so that's fair I guess

No. 405114

>>405103
You kind of sound like a horrible doctor who suspects every patient, though? I mean, do you believe anyone is genuinely sick orrrrrr

kek, that's if you are really a doctor. I have severe doubts about some of the "medfags" on here.

No. 405123

>>405114

I am probably horrible, but I definitely do not suspect every patient. Pain doctors get drug seekers. Orthos and rheumys deal with compensation seekers. We get plain old Munchies and malingerers, some for good reason.

Perhaps it's worth pointing out that a malingerer can be sick and/or have problems that require help, and a Munchie is someone in desperate, desperate need of help. If I did not suspect it when shit doesn't add up, I'd be no better than the pulmonologist who once diagnosed a heart attack as bronchitis because he was so bound to his own professional perspective, he was unwilling to consider that a chest issue may involve anything other than the lungs (probably anecdotal but often mentioned in med school). Giving people what they ask for is not our job. Our job is to give them what they need, and if a healthy degree of suspicion is involved, fine. The glory of working in tertiary referrals is that you are unlikely to see the same person too often. Mind you, we also get the cases nobody else wanted, so arguably we get the self-described medical mysteries.

Ps. Don't ever start your conversation with a doctor by saying you're a medical mystery. Don't get our hopes up. It's not fair.

No. 405125

>>405114

Can't really attest to the population at large other than my good self but I do know especially younger docs enjoy reading this and similar threads. When you're young and inexperienced, you're more than a little gullible and nobody wants to kill their career before it began in earnest because they believed what the patient said a little too much.

No. 405131

>>405111

Joint Hypermobility Syndrome is considered the same as hEDS as far as joint issues are concerned.

No. 405153

>>405125
i'm almost positive my gp knows about this thread because of something he said a few weeks ago that we laughed at but i think he was serious

No. 405172

>>405131

The new diagnostic criteria changed this. EDS requires systemic involvement. Hypermobility Syndrome (JHS, BJHS etc.) is not sufficient. EDS charities and the HMSA in the UK have been insisting for years that HMS = hEDS, they were wrong.

No. 405200

>>405172

Well, given that hEDS is pretty much what you decide it is (as in, there is no single diagnostic test that conclusively determines for each patient whether they have or don't have hEDS), I am somewhat dubious as to the meaning of a hEDS and HMS not being the same… I mean, there's no evidence based reason why either co-classification or separation is better than the other way, though I do much prefer keeping HMS and hEDS separate.

No. 405203

>>405172
kek, the new guidelines are still human designed and have particular aims driving what is included, don't fool yourself that they're somehow perfect and unbiased.

No. 405205

>>405172
They weren't wrong, according to the old criteria it was the same basically.

No. 405213

>>405203

I never said it was perfect. I just pointed out that the old HMS = hEDS view is no longer considered correct.
That's one of the good things about the new criteria and one of the reasons they were created.

Also the HMS = hEDS thing was true only because no one ever thought hard about it and the charities involved should never have pushed it because it turned people who were naturally flexible into rare disease zebra warriors.

No. 405215

>>405213

God damn it. I fucking can't stand the whole zebra thing.

No. 405229

File: 1508277398590.jpg (6.96 MB, 4032x3024, THIS ONE.JPG)

Remember Dominique Graffeo? The munchie that records her outings with her “service dog” and claims all kinds of drama? The dog that is “fully trained” when it was rescued only this past summer? She randomly has almost 100k subscribers on youtube and people are starting to call her out about driving, I’m so giddy because she has made so much money off of faking her illness…

She lives in Alabama (she posts a PO box for “fan mail”) and according to google, Alabama doesn’t let people drive 6 months after an episode of syncope/LOC. Don’t have much info on the bottom person because they don’t have videos but above commenter claiming to have POTS appears to have a service dog, so not sure if munchie or not considering most service dogs are fake and not actually registered.

I feel like this confirms dominique’s munchie-ism because surely they would take away her license?

No. 405231

>>405229

Hm. Is POTS a mandatory disqualifier as opposed to a discretionary disqualifier based on the physician's judgment? Not to wk, just wondering, as e.g. in most countries, POTS is discretionary while NCS is mandatory, just like epilepsy.

But I can well imagine this person has just been busted. In which case, lol.

No. 405232

>>405229

Ps. apoquel is not an allergy medication but a JAK1 inhibitor and thus a specific antipruritic.

No. 405238

>>405231
My state pulled my license and we have a 3 month versus 6 month requirement. They pull for seizures and multiple syncope. You don't lose it for just a random faint or if they know it was due to say dehydration for a virus or heat exhaustion. However, if you have multiple faints bye bye license.
Sage for self blog but felt it was relevant.

No. 405253

>>405231
POTS can indeed be a discretionary disqualifier depending on the situation.

In my state, it’s 6 months with loss of consciousness or seizure.

For me, I was cleared by my doctor despite a POTS dx prior to getting my license because one can usually tell when you will faint with most dysautonomias. You also increase your chances of driving if you have some sort of working treatment and can safely pull over at the onset of most pre-syncopal events, you can drive.

Regardless of if you are allowed to keep your license, you do have ALL legal responsibility if your syncope causes an accident.

No. 405256

>>405253
I have never heard that, and I see a pots specialist. Pots is different for driving I’m assuming, because seizures are definitely a no-no. It’s not like passing out in pots is random like siezures are, with pots you know it’s coming, and you better not be suddenly standing up while driving, or you’ve got some much more serious things to address as far as safe driving goes. All the munchies with pots service dogs will tell you otherwise, but pots passing out is pretty easy to avoid if you’re following medical guidelines and are careful and aren’t a complete idiot.

No. 405268

>>405256
>>I’ve never heard that
Could you be more vague on what “that” you’re referring to in my post with multiple points?

You reiterated exactly what I said. You can tell when you’re going to pass out with POTS…

It probably was slightly different for me being cleared since I have multiple dysautonomias, not just POTS, but loss of consciousness within the last 6mo period is 100% listed on the disqualification sheet for licenses without doctor clearance in my state. And, yes, regardless if your doctor clears you, by negligence laws you are responsible for it legally because you are driving knowing you have a medical condition that could potentially put others and yourself in danger (it’s considered medical negligence).

No. 405269

>>405268
err, medical negligence from a patient / law standard, not a doctor being negligent. should have clarified

No. 405270

>>405213
And hypermobility syndrome doesn’t include all the other manifestations of eds that happen other than the joints. Joints are just part of eds, it can affect nearly every organ system in the body. The reason it’s important to separate the two is that people with eds need much more treatment from many specialties, and insurance or state-funded health care doesn’t want to pay for that for a patient who only has hms (not that it doesn’t have valid symptoms,because it totally does, hms just doesn’t have the range and variety that eds has). Being diagnosed with hms gets you pt, but for someone who actually has eds (the new criteria) can get the treatment they need )and maybe didn’t know they needed), without insurance saying it’s unnecessary. If you actually have eds, it’s not about the label (being a special zebra or whatever, I think that’s dumb and infantalizes it), it’s about getting the appropriate treatment to be able to live as normal a life as possible. It’s not about being special and getting accessories and calling yourself a unicorn zebra warrior; munchies’ view of eds is frankly quite insulting and demeaning of those of us that have eds and it’s complications but are trying to be normal, responsible adults to the best of our abilities.

No. 405273

>>405268
I’ve never heard that having pots and passing out from it automatically disqualifies you from driving. I see a pots specialist and have previously seen the Mayo Clinic for pots, and neither one have ever told me I couldn’t drive. But yes, you are always responsible for yourself and your vehicle; it doesn’t matter if you pass out from dysautonomia or have a random heart attack, if you cause an accident it’s your fault, and moreso if you knew you shouldnt be driving in that moment.

No. 405275

>>405114
Good job, Dr. Anon. I would hope, as a patient, that you consider every single option when diagnosing a patient, whether it’s something the patient wants to hear or not. No one wants to hear that there’s a psychological component to their illness, whether it’s entirely psychological or if that’s just a facet of it. But if you treat a patient who’s not physically ill for a physical problem, you could be doing more harm than good (look at Chloe and jaquie and all the other cows that have had tubes and lines unnecessarily put into them). Plus, even the most physical of illnesses have psychological factors. POTS and MCAS can be worse with anxiety, having cancer or MS can cause severe depression. And the opposite is true as well; a mental illness may only show physical symptoms. A patient who comes to an er with heart problems may have an eating disorder that’s caused said problems. You’re not the bad guy for being thorough and questioning people, you are being a diligent and doing your job much better than the doctors of all these munchies.

No. 405277

>>405275
Top kek, well, you have to be a munchie considering how desperately you're brownnosing someone who anonymously says they're a doctor. stfu, no one wants to hear about your medfag fetish.

No. 405289

>>405275

I would be fine with hearing there's a psychological component to my illness, because that means it'll go away unlike some physical illnesses that last a lifetime. I'd actually be thrilled if this was all in my head.

No. 405291

>>405277

For all your doctor/med hate, you must be a munchie. I sure hope so, for your sake, because otherwise you’re just a bitch, and sadly there’s no cure for that.

No. 405292

>>405289

Exactly. If an illness is purely psychological, you can be cured. With most of the munchie-popular illnesses, people who actually have them are stuck with those for life.

No. 405294

>>405291

Only munchies are convinced that doctors are always wrong and that illness can’t possibly psychological. But whatever, even if the “doctor” isn’t actually one, all doctors should still be open to everything. Just because someone’s convinced their illness is totally not mental in any way doesn’t mean they’re right kek. Look at all the cows discussed on here.

No. 405301

>>405291
Nope, not a munchie, just find your obsession with the medfags comical. Don't you even know that sucking up to medical staff is a tell?

idc if you think I'm a bitch

No. 405313

>>405291
you have to suspect that some medfags are sophisticated munchies. anyone who doesn't take medfagging with a grain of salt here is stupid as shit, frankly. even on actual MD forums there are munchies playing the part.

No. 405315

>>405312

Has no one on this site heard of writing to someone to bring up a point without meaning it literally to that person? We do it all the time assuming cows are reading, We all know that anyone can claim to be anything on the internet , none of us are five. I’m so sorry that you find recognizing people’s good work (as in the medical community in general) so abhorrent. And munchies don’t brown nose as much as they lie, manipulate, and demand. But hope all that cynicism works out for you.

No. 405324

>>405313
Indeed. Not to mention the fact that you can be a real medfag AND a munchie. Some people on this board want to assign everyone into neat categories (both the ig spoonies and posters on here), but we'd do well to remember that anyone at all may have FD, whether they're a doctor or not, and that it's not that difficult to keep up a ruse online if you're moderately bright. There may be some real doctors on here but I'd bet real-world money that not everyone who has said or strongly implied they're a medfag is one. It's mostly a boring sidetrack anyway, can't you go and complain on doctors' forums if the job is sooo tough? We have farming to do.

No. 405332

>>405324
Yup. Time to move on to milk. Anyone got anything? My usual cows are depressingly dry today.

No. 405335

>>405153

Please share!

No. 405337

File: 1508292901237.png (1.34 MB, 1536x2048, ams3.PNG)

Sorry it's not super milky. Chronically.ams has done a Q&A…. and is moving to Australia where they will apparently give her the coveted tube.

No. 405338

File: 1508292936585.png (1.24 MB, 1536x2048, Ams1.PNG)

Here someone is starting to smell the cowshit, which of course she denies.

No. 405339

File: 1508292978190.png (1.79 MB, 1536x2048, Ams2.PNG)

Has anyone seen her "faint" in her vlogs? Can anyone stand to watch them in the first place?

No. 405341

File: 1508293048811.png (4.06 MB, 1536x2048, ams4.PNG)

And finally, no surprise that her favourite show is medical-based. Munchies love that shit - remember JBN's trip to the set of Casualty?

No. 405358

>>405339
Lol heart murmur.

>>405341
Every Munchie or OTT I know is infatuated by any medical shows.. haven’t found one yet that isn’t obsessed with Greys Anatomy.

No. 405389

File: 1508307746304.png (910.7 KB, 1080x1920, Screenshot_20171018-081710.png)

This is one of my favourite new profiles since you can just watch her spiral into munchiness. Her profile started out normal and slowly all of her photos became medical.

She also manages to take selfies during cluster headaches, which just doesn't happen. If you can smile for a photo it's probably not a cluster headache.

No. 405392

>>405389
Who openly broadcasts their opiates to the Internet… really? Wtf.

No. 405400

>>405389
Yeeeaaaah…No. If you are in the middle of cluster headaches, you are NOT going to be like "ayyyyy did prime selfeh tyme!"

>>405392
Right? I always wonder if pain patients on opioids consider their location could be geotagged and/or they could be doxed and someone could try to rob them for it, given how much of an epidemic there is now. I have even heard of addicts going through trash of known patients to dig out their used patches because there is always a residual amount in there (at least with fentanyl).

No. 405418

>>405389
Ooh look at the nice accessories this lucky girl has!

No. 405441

>>405389

I know the hospital (LUMC) she's being treated at quite well. It's a major university research hospital, and it's somewhat known for their docs being, err, a little more enterprising than they ought to be sometimes. That is, lots of weird ass ideas and weird ass treatment suggestions. Looking at her medications, she is incredibly overmedicated. Two different short acting opioids? Cymbalta and Lyrica together? Etc.

No. 405442

>>405339

HoKPP? Seriously? It's one of the rarest channelopathies, and the clinical appearance is easy to fake while the genetics are not. I'd love to know if she actually had genetic testing for this or, you know, just made it up, because I'm a little dubious as to the number of spoonies who list HoKPP as just another of their conditions…

No. 405448

>>405442

I think I recall her saying of her family members also had this. Of course, people can say anything.

No. 405453

>>405389
> you can just watch her spiral into munchiness.

O wow, I see what you mean. At first it's fairly normal selfies, her at the beach, etc. Then all of a sudden it's pill porn, "look at all my different braces" and about TEN pictures of her during a f*cking cluster headache showing off her oxygen mask.

That's just.. no. You are trying to tell us that you have a headache condition that is known as "suicide headache" because people actually want to DIE if they have an attack, and you manage to take a selfie during it? Not just once or twice, but time and time again? Normally the mere mention of 'cluster headache' would elicit all my emphathy, but THIS? No, no, and NO.

No. 405460

>>405358

kek, at least this one actually wears compression stockings

No. 405480

>>405441

One of the reasons I refuse to go to the LUMC personally. But I know a lot of people that love going there because they get everything they want.

No. 405485

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