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Previous Thread: >>>/snow/387658Discuss 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
chronically_jacquie (has her own thread >>>/snow/391202
outrageously_helpful_orion (Jaq's friend)
shelbiepaulley / beepaulley
gorgeous_gatorade_princessMost Recent Tumblr Cows:
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. 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=15337239https://www.abc.net.au/news/health/munchausen-by-internet-what-drives-people-to-fake-an-illness/7631990https://www.theguardian.com/society/2015/apr/29/jules-gibson-munchausen-by-internet-sickness-bloggers-fake-it-whole-pantryhttps://en.wikipedia.org/wiki/Munchausen_by_Internet#Characteristics
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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?!
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>>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.
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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?
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.
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- 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.
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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.
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.
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.
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)
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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!!!
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.
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Found this in the comments of one of her ig pics if it helps
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.
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I'm also a big fan of her autism routine.
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.
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Because finishing with two dislocated kneecaps makes complete sense…..
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Sooper serious anorexia
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.
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.
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.
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
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Oh look, allyson is drunk (again). I’m sure that’s great paired with her MIs, CIs, and medications…
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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!
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.
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.
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Kek. She goes down the munchie rabbit hole more by the day.
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.
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>>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.
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
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.
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.
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
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.
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Dani gets called out
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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.
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
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?
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.
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)…
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.
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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.
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Look who's a fan of Jaquie!
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.
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
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…..
>>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.
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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.
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Here’s the caption
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
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.
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?
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.
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.
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.
>>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.
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.
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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?!
bendywarrior on tumblr
She’s been one of our fave cows lately
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.
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.
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!
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)
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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!?
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Her poor doctors.
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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.
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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
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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).
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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.
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.
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Let's talk about the satanic creation called Spoonie Living App… here are some of my favourites. #stupidthingwarrior #dumbspooniefighter
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More SpoonieLivingApp cringe…
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In case 'Tummy Trouble Warrior' didn't out you in a coma….
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You WHAT? WTF. What does that app even do
? Give you pre-made hashtags for every symptom out there to click on, or whatever?
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
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I see your spoonie therapy cat and raise you this…
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.
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"ICU conqueror" Jesus.
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At least this one admits she's got issues.
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
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.
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.
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.
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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.
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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?
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.
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.
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Oops forgot photo.
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
-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
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….
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.
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.
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i wonder what the other players would think if they realised there isn't much physically wrong with HMG
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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
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You can't stop the milk, Paige.
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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.
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.
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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?
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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.
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.
Am I a bad person if I think that'a really funny?
BTW, why is he on oxygen?
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
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:
Ruby Shallom (another "vaccine injured" one)
She's collecting famous munchies too haha
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.
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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.
Close relative with serious illness can be a trigger
point for munchie/attention seeking behaviour… of course, not always.
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Lulz, what's got up this one's butt?
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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.
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
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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.
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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”
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Oh but apparently she had a mental crisis earlier today that no one paid attention to so that’s probably why
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Terrible trauma! SIX panic attacks!
>> Quick mom, take my picture for the internet or no one will ever know!
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.
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.
Also she has THREE fucking service dogs?!?
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.
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?
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?!
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.
Thanks for the info
Sorry if I replied wrong I totally don't know how this works haha
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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?
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.
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.
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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.
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.
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.
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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.
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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.
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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?
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Guys bendywarrior wrote a suicide note to her boyfriend and posted it online before even acting on anything. Attention seeking much?
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.
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.
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.
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She should probably get a paper journal… having a public online journal screams attention. The nature of journaling is supposed to be private.
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the demons go away when she's a little achey.
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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!
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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.
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.
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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.
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
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.
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Where does she claim cancer?
Also, I'm dubious about the aniridia. She seems to have intact irises.
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.
>A subset of WAGR syndrome patients shows severe childhood obesity; the acronym WAGRO (O for obesity) has been used to describe this category.
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?
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
Wow, munchie gold mine there!
I shall do more digging on this one.
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.
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.
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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.
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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.
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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.
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She says it's a branch off ms
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).
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.
>>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.
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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"
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.
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”
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
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.
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.
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.
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Ain't life a party?
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We are horrid people.
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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…
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Excuse me, sir, can I interest you in a shot of aborted fetus?
Kill me now.
(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…)
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.
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.
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.
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.
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
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.
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.
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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.
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It's official, the spoonie community has been taken over by munchies. These are the top photos on IG for the #spoonie tag.
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Vaccine injured AND Lyme disease. Maybe she needs to develop EDS and there's the trifecta.
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Vaccine essential oil MSbP klaxon!
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Except when she's faking a central line.
Wow, the second male munchie we've had!
Does't Ruby Shallom claim she only has one functioning limb too?
>>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.
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.
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.
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.
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.
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.
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
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
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.
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And the sweet, sweet pity bucks.
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Ooops, forgot to attach the image.
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
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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.
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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.
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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.
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.
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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.
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Look who's shopping for new symptoms…
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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.
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.
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.
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.
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.
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.
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).
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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.
I don't know, who do you think do people here have a vendetta against who did not do something horrifically obnoxious herself?
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?
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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…
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.
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
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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/
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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
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>>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?
? 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?
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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.
You mean this place, where apparently they do detoxification and treat electrical sensitivity?https://breakspearmedical.com/
That's just great.
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…).
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.
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."
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.
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.
I live in a rural area, so there's not much confusion.
Sorry for assuming. :)
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.
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.
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.
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.
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.
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.
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.
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.
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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.
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Maybe actually sick, I dunno. If she is actually sick, she’s way way ott
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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)
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.
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.
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.
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.
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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 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.
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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.
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.)
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.
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.
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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?
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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.
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.
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.
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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.
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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!
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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.
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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…
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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.
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.
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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
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
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.
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/
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.
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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.
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?
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bendy is now getting convinced that she has TN from strep. kek these anons tho
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Found this on Bendycripple's. Whcih one of you reprobates did this? :)
and u are boring as fuck
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
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Lol, the most transparent sign of a scam: 'urgently need [lots of cash] by tomorrow or irreversible, disastrous consequences will follow!' Oh, Angie…
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.
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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!
This. I think we need a New England journal of medicine thread over in ot.
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"I'm your kids future ER doctor"
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?
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.
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.
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.
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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.
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.
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.
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.
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
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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)
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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.
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
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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.
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.
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).
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.
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).
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.
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.
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Missing the attention?
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She’s sucking in her ribs so much.
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I swear these grown women act about 15.
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. .
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.
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.
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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.
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./[
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,
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.
>>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.
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I don't know how to link videos but chronically vlogging girl just admitted it was miscommunication and she does Not have gastroparesis kek
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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
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.
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.
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.
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.
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.
> 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.
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.
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.
"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.).
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.
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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.
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
>>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.
>>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?
>>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.)
Never mind, found it
>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.
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.
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?
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.
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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?!
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.
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.
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.
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.)
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Oh look who doesn't like her tubie.
"The greatest tragedy in life is coveting something for the longest time… and attaining it."
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.
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.
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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)
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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.
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.
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.
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.
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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.
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.
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.
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).
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.
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.
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.
> 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!!!
>>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
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…
>>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).
>>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.
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.'
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.
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.
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.
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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?
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.
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.
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.
>>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).
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.
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.
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
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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.
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Here someone is starting to smell the cowshit, which of course she denies.
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Has anyone seen her "faint" in her vlogs? Can anyone stand to watch them in the first place?
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And finally, no surprise that her favourite show is medical-based. Munchies love that shit - remember JBN's trip to the set of Casualty?
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.
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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.
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).
>>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.