Community Munchausen's by Internet (Malingerers, Munchies, Spoonies, etc) - Feigning Illnesses for Attention

[Munchie_Minder]

Since you seem to have expertise in the subject, have you seen or heard of the oval 8 finger braces? I keep seeing people who claim to have EDS wear them. I thought they were used more for straightening fingers deformed by RA or nerve entrapment. Do they do anything for hypermobile fingers?

As others have mentioned, they are definitely helpful for certain conditions which are more likely to be found in EDS: swan neck deformity, hyperextions, and DIP dysfunctions. These splints are made to be in the “active” range of motion, and are only supposed to give support and prevent range of motion that leads to hyperextension. As others have mentioned, they need to be prescribed and then fit by an OT to be effective and limit pain and future injury. True EDS can benefit greatly from them. DIP joint dysfunction alone can cause a great deal of pain doing daily activities.

 

[Chicken Picnic]

Seeing all these people with PICC lines fiddling with them and having shitty dressings makes me cringe so bad.

I used to work in oncology, where a lot of patients going for chemo have a PICC fitted as chemo can be painful and/or damaging to your veins after a while. Not everyone opts for one, but depending on how much you're having and what drug, a lot of people get them.

If anyone isn't aware of the difference between all these different lines, here's a little medical PSA. Central lines are put in your neck, go down to your heart. PICC lines are in your upper arm and also go to your heart.

I don't know the process for central line insertions, but PICC lines got put in on the daily at my place. They numb the area, then thread the line up your arm into your chest. You're awake for the whole thing and they use ultrasound to guide it. As it's a line to your heart it's important to have regular dressing changes and to keep it clean, as any bacteria is going straight there. Most people have a bandage over their lines to keep them from catching on clothes etc, it's like a netted tube-bandage. This is on top of the clear looking plaster thing that someone posted previous. You don't touch it without wearing full protection (gloves & gown) and it needs to be regularly flushed through with sterile saline so it is clean and bacteria free.

So yeah, fiddling and pulling on your PICC is a dumb fucking thing to do and you are genuinely putting yourself at risk of serious infections. But hey, who wouldn't want e-coli floating straight down into your heart after you fingered your line to take a cute tube selfie when you haven't washed in days or haven't washed your hands after you had a shit?

 

[HotpieIsTheNightKing]

As others have mentioned, they are definitely helpful for certain conditions which are more likely to be found in EDS: swan neck deformity, hyperextions, and DIP dysfunctions. These splints are made to be in the “active” range of motion, and are only supposed to give support and prevent range of motion that leads to hyperextension. As others have mentioned, they need to be prescribed and then fit by an OT to be effective and limit pain and future injury. True EDS can benefit greatly from them. DIP joint dysfunction alone can cause a great deal of pain doing daily activities.

All true, they can be quite helpful to pain reduction and function, especially if you work with your hands. However, so many of these people use the damn etsy splints. They look pretty, but they just don't work nearly as well, especially the ones for a thumb MCP joint. Try bringing this up in the community, saying you should see a hand therapist and be measured for splints that are certified as medical equipment and they will jump down your throat like you wouldn't believe. It's actually causing some problems too. Insurance is as always trying to get out of paying for the legitimate ones. Due to the etsy knockoffs, they now are starting to argue that there is a cheaper alternative, so therefore they should not have to pay for the real ones. This is why we can't have nice things.

 

[large_farva]

Sarah-Jean barely survived a VERBAL ATTACK severe mocking.
Some asshat did call her out, but the entire recorded portion of the video shows the man talking in a normal tone of voice.
It's far from a "verbal attack", he just made a fool of himself. For a rando that hasn't seen her IG or youtube, he sure smelled her shit from a mile away tho.

Couldn't dl the video this time

I WAS VERBALLY ATTACKED!!

While visiting New York this past week- on Monday I took the subway with a friend and my father. The subway was packed and fitting my wheelchair in was not easy but I made it in. I was offered help by a man asking if I needed more room. I thanked him for his help and said that I was fine and smile. This man seemed to be nice and thoughtful- man was I wrong. Just a few minutes into our trip into the city I started to feel very itchy and my heart started to race. I had mentioned to my best friend who was on the trip with us that I probably should be wearing my mask. She went into my bag and handed it to me, and I put it on. Not even a minute later this so-called nice man asked if he could ask me a question. Not knowing what it would be about but I of course said sure. He asked why I use my mask and I explained that the easiest way to tell you is that I have a extreme allergy. Things went down hill and fast. And I don’t take my word for it as some of what I’m about to say may be out of order but initially he said very rudely “ so you didn’t need a mask before and now you do? “. I said YES!! He wasn’t happy with my answer. He kept tearing me apart with questions. Why this why that. How this how that. Pretty quickly I had several women attacking him for attacking me. Now if you know me at all I am very blunt and outspoken and I’m very short tempered when it comes to ignorance. But I felt that I should keep my mouth shut and let him speak the way he feels. I was not in the mood to be involved in drama. It took all I had to say nothing. I did put my quick two sense in but not much at all. 4 woman including my friend tried to shit him up. He started with “ you’re in wheelchair but you have sunglasses, nice mask, nails and then at some point mentioned a nice phone”. Like what!! What does that mean. Can people in wheelchairs not have stuff. Should I not wear shoes either? After many times of him going on about my things a nice woman started to record him while I was recording him from my lap. The woman from Ireland was so amazing with defending me. After us begging him to get off at a stop he eventually did. (Continued in comments) # verbalabuse # abuse # wheelchair
And he was reported when cameras showed this attack to a worker on the subway. We only recorded a very shot moment of this 10-12min long attack. Still in shock. Please share this story.

Screenshots of her story, I can't believe she even lived to tell people about the horrors of having someone talk to you in a normal voice.

This is what she lives for, she can't get doctors to listen to her but going out in public and deliberately acting a fool, delaying flights, being a nuisance, she is just waiting for someone to say anything so she can REEEEE about being attacked.


Just in case anyone else missed this, seems a good time to relive it. If it weren't for shit like this, I would never check her channel.

 

[Free Pancakes]

That guy is totally a dick though. There are legitimate reasons to be in a wheelchair and still have your nails done and have a nice phone. Pure luck that he singled out an actual faker.

 

[Punkinsplice]

Yeah he was out of line, but I see how many times she uses the word "attack" and give her story the side eye. If she is telling us an accurate account of the conversation, then I would 100% tell him to fuck off. The ladies coming to her defense could mean that he really was being offensive. I don't think it ever a good idea to green light an inquiry of "can I ask you a personal question?" from a complete stranger on public transport , either, but she isn't the brightest bulb on the Christmas tree.

 

[Munchie_Minder]

Sarah-Jean barely survived a VERBAL ATTACK severe mocking.
Some asshat did call her out, but the entire recorded portion of the video shows the man talking in a normal tone of voice.
It's far from a "verbal attack", he just made a fool of himself. For a rando that hasn't seen her IG or youtube, he sure smelled her shit from a mile away tho.

Couldn't dl the video this time

View attachment 983670



Screenshots of her story, I can't believe she even lived to tell people about the horrors of having someone talk to you in a normal voice.

This is what she lives for, she can't get doctors to listen to her but going out in public and deliberately acting a fool, delaying flights, being a nuisance, she is just waiting for someone to say anything so she can REEEEE about being attacked.
View attachment 983671View attachment 983674View attachment 983676View attachment 983677

Just in case anyone else missed this, seems a good time to relive it. If it weren't for shit like this, I would never check her channel.
View attachment 983680

Bahahaha...

Yeah he was out of line, but I see how many times she uses the word "attack" and give her story the side eye. If she is telling us an accurate account of the conversation, then I would 100% tell him to fuck off. The ladies coming to her defense could mean that he really was being offensive. I don't think it ever a good idea to green light an inquiry of "can I ask you a personal question?" from a complete stranger on public transport , either, but she isn't the brightest bulb on the Christmas tree.

Has anyone actually been able to watch the. Video? Here’s my take. I doubt her side of the story. What I’m guessing is that she said something about not being able to afford something or was trying to get some kind of treatment or something. Why else would someone bring up any of those things unless they were just completely mental? Compared to the rest of the world, having a smart drive, cell phone, nails did and traveling means you are pretty rich. I’m wondering if this guy didn’t maybe search her name really quickly or something.

I have seen and known many full time wheelchair users and a chief complaint in women’s circles has always been how to keep your fingers looking less chewed up and scuffed up without wearing gloves and getting daily polish change. So maybe he noticed her inexperience with her chair and all the other stuff just set him off. I dunno.

I would like to see the actual video to see this “verbal assault”.

 

[Ellesse_warrior]

Bahahaha...

Has anyone actually been able to watch the. Video? Here’s my take. I doubt her side of the story. What I’m guessing is that she said something about not being able to afford something or was trying to get some kind of treatment or something. Why else would someone bring up any of those things unless they were just completely mental? Compared to the rest of the world, having a smart drive, cell phone, nails did and traveling means you are pretty rich. I’m wondering if this guy didn’t maybe search her name really quickly or something.

I have seen and known many full time wheelchair users and a chief complaint in women’s circles has always been how to keep your fingers looking less chewed up and scuffed up without wearing gloves and getting daily polish change. So maybe he noticed her inexperience with her chair and all the other stuff just set him off. I dunno.

I would like to see the actual video to see this “verbal assault”.

There isn't a video, it looks like it should be a video but I checked her insta and it doesn't play. She obviously chickened out of actually filming him or is drunk again and fucked up the upload

 

[Spooniest spoon]

Here to dump the latest Amanda/ren drama because she's been munching hard and it's been pretty entertaining.

Spoiler: Penny the PICC

IF spent ages arguing over whether this is real or not. Ifgw had a poll debating whether it was real or fake. I'm inclined to think real as her previous attempts at faking toobs (looking at you IV picture) were so laughably bad. I really don't think she has the skills or intelligence to fake this.



Close up and by far the worst picture of her so far.

Anyway, today we have the inevitable PICC drama. Somehow during a dressing change, her PICC got yanked out by 10cm so now she's "waiting for a replacement"

Tl;dr- Ren announced PICC line and named it. Reddit shat itself arguing about whether it was real. She's not claiming it got ripped out during a dressing change and she's getting a new one. Also confirmed she does not have GP.

 

[large_farva]

There isn't a video, it looks like it should be a video but I checked her insta and it doesn't play. She obviously chickened out of actually filming him or is drunk again and fucked up the upload

I can play it, but only on my phone through the app. I have tried a couple things and so far unsuccessful at doing anything but saving the video on my phone through the app, and I cannot download it. The best idea I've got so far is to do it in the most exceptional way and I'm just not ready to take a video of a video on my cell phone.

So here's the transcript from the portion she posted to instagram. If she's able to post it on youtube with her intro song, I have no doubt she will.
The video starts after the initial incident already happened. My best guess is this guy mumbled something loud enough for someone to hear and got called out for it, which resulted in him acting defensive and annoyed. The guy has an accent and speaks broken english.

BAD MAN: ...on the sunglasses. ...then on and then off

SJ: laughing

BAD MAN: I speak with myself

WOMAN ONE: Why don't you get off at the next stop if you don't like it then

BAD MAN: I speak with myself, that's what I said

WOMAN ONE: Well everybody can hear you

BAD MAN: Yeah but I speak with myself, am I wrong?

WOMAN ONE: Well then talk in your head and don't use your mouth. ?... respect

BAD MAN: I know I speak with myself, a lot of people speak with themselves and piss me off. Sunglasses. Mask. Fingernails.

SJ: Oh no it's fine, thank you so much

---Camera Cuts---

Starts again, in SJ's lap, pointed down to obscure that she is recording this person who begins this take saying "don't follow me"

BAD MAN: ...don't follow me..I speak with myself"

WOMAN ONE: are you having a bad day or something?

SJ: Laughing


BAD MAN: ...just encourage everything, they give you bullshit and everything and they encourage it"

SJ: You got issues. Major issues

BAD MAN: Some people they have issues, people they embrace them

SJ: Laughing

WOMAN TWO: Well good for you, you shouldn't embrace yours

WOMAN TWO: Hopefully you end up in a ? cell, Then you can really embrace your issues with those people

BAD MAN: They have a nice wheelchair, they have nice things, have everything

SJ: Have a good day (to someone else)

BAD MAN: Yeah, you're right, Let me get off

Other Womyn: Yeah you should
Good
Bye

BAD MAN: And not gonna give a fuck

WOMAN TWO: Oh my god I am shaking

SJ: What Was that?

 

[Ellesse_warrior]

I can play it, but only on my phone through the app. I have tried a couple things and so far unsuccessful at doing anything but saving the video on my phone through the app, and I cannot download it. The best idea I've got so far is to do it in the most exceptional way and I'm just not ready to take a video of a video on my cell phone.

So here's the transcript from the portion she posted to instagram. If she's able to post it on youtube with her intro song, I have no doubt she will.
The video starts after the initial incident already happened. My best guess is this guy mumbled something loud enough for someone to hear and got called out for it, which resulted in him acting defensive and annoyed. The guy has an accent and speaks broken english.

I don't have the app maybe that's why it wouldn't work, it's usually not an issue though so that's weird. Thanks for the transcript though. Is this the offending 'attack'?

'BAD MAN: They have a nice wheelchair, they have nice things, have everything '

TBH SJ laughing at the man talking to himself is a lot ruder than this imo.

 

[Punkinsplice]

Ok, SJ and the other woman sounded more like they were on the attack, and they were hateful, imo. That guy didn't make sense, but he didn't seem aggressive.

 

[Dr. Celery MD]

I can play it, but only on my phone through the app. I have tried a couple things and so far unsuccessful at doing anything but saving the video on my phone through the app, and I cannot download it. The best idea I've got so far is to do it in the most exceptional way and I'm just not ready to take a video of a video on my cell phone.

Here's the video.

 

[HotpieIsTheNightKing]

I can play it, but only on my phone through the app. I have tried a couple things and so far unsuccessful at doing anything but saving the video on my phone through the app, and I cannot download it. The best idea I've got so far is to do it in the most exceptional way and I'm just not ready to take a video of a video on my cell phone.

So here's the transcript from the portion she posted to instagram. If she's able to post it on youtube with her intro song, I have no doubt she will.
The video starts after the initial incident already happened. My best guess is this guy mumbled something loud enough for someone to hear and got called out for it, which resulted in him acting defensive and annoyed. The guy has an accent and speaks broken english.

Bless you for giving us this. What I'm hearing here is that all parties involved are mental. This is what I come here for, organic jerry springer!

 

[WarpedTourWasFun]

So she got a group of strangers to gang up on a possibly mentally ill man who doesn't have a stellar grasp on the English language. What a class act.

 

[Occam's Epilady]

I've got a new one for you guys. Julia, previously @key.lyme.die, currently @spoons.of.juju. She claims the whole EDS cluster, plus PCOS and (newly) MVP. Her GFM is at $2,100 currently.



In her GFM
(archive ), she describes quite clearly how she developed anxiety, depression, and migraines. She could have worked on addressing (and advocating for) these issues, which are valid and can be crippling for people. Fortunately for us, instead of doing anything helpful for herself or others, she rushed home to Portland to see her "primary care naturopath," and was diagnosed with . . . chronic Lyme. Since then, she has seen numerous "Lyme literate" doctors, who have put her on a whole host of ridiculous treatments. And for some reason, it didn't work! In spite of IV antibiotics, she still feels her heart racing, due to what is clearly NOT anxiety omg how dare you even consider that.



Here's one of my favorite things about Juju: she has an oxygen tube and is totally clear on the fact that there's nothing actually wrong with her lungs. It's the babesia causing her perceived shortness of breath, you guys #definitelynotanxiety





A few weeks ago, Juju found, to what I'm sure was everybody's shock, that there was something actually physically wrong with her -- mitral valve prolapse.

Spoiler: MVP

Now as you may know, MVP is fairly common and not usually a big deal, but Juju is special, so she immediately starts tagging everything with all sorts of cardiology terms, and ups her GFM goals.



. . . only to find out that her heart isn't causing any problems WOMP WOMP.

She also posts tons of artsy photographs where she uses props to try to demonstrate that she really does feel sick, all on insta. She only has 80 posts so far; she only started her account this summer, after she got her "Lyme" diagnosis and treatments. In a CRAZY coincidence, it turned out that unnecessary antibiotics and constantly perseverating on her "illness" have only made her feel worse! Totally inexplicable.

I feel like she's going to come out with some good stuff: she clearly has the energy and resources to doctor-shop and is tapped in to some community of enabling woo doctors, plus she seems to both be naturally thin and willing to play it up and/or starve herself . . .

 

[Punkinsplice]

Julia has definite potential, especially with the drama. I can't wait for our resident medical gurus to weigh in, but my vote is on somatizing untreated mental illnesses. MVP is real, and it can be a symptom (not sure if that is the right word) of Marfan Syndrome. I see she is very thin, any idea on a height? Not that i have any real medical knowledge, mind you!

 

[Occam's Epilady]

Julia has definite potential, especially with the drama. I can't wait for our resident medical gurus to weigh in, but my vote is on somatizing untreated mental illnesses. MVP is real, and it can be a symptom (not sure if that is the right word) of Marfan Syndrome. I see she is very thin, any idea on a height? Not that i have any real medical knowledge, mind you!

She does look tall to me in the pictures where she's next to objects and other people that can provide a sense of scale! How funny would it be if she does have Marfan's and her team of superstar natural doctors had missed it for months . . . only for a farmer to guess it within 10 seconds?

(obviously it wouldn't ACTUALLY be funny if she had Marfan's and I hope she doesn't)

 

[Punkinsplice]

She does look fairly tall to me in the pictures where she's next to objects and other people that can provide a sense of scale. How funny would it be if she does have Marfan's and her team of superstar natural doctors had missed it for months . . . only for a farmer to guess it within 10 seconds?

^(obviously it wouldn't ACTUALLY be funny if she had Marfan's and I hope she doesn't)

I know, that would be terrible, but reading about the sudden MVP made my heart (haha) sink just because I am a little familiar with this condition. I got the impression that she did not have a heart murmer until recently, or was it just not caught in previous exams? I think it is an aortic dissection that can suddenly kill her with Marfan. MVP is something that you can have without knowing, but maybe her heart weakened because of a hidden ED and made it worse? I am really grasping here, though. I am curious whether she has lost weight or was always skinny. I don't like to jump to anorexia just because she is thin.

 

[large_farva]

Oh I found a new one too, they're fucking everywhere. Another chronic lyme warrior, this one had a PICC but upgraded to a port after lots of arguing.

Katie Dingman / @wonderfullyyoung

Katie is suffering from chronic normal test results, PANS/PANDAS and chronic lyme

wtf is an unprovoked seizure?


Ah but she has had several more EEGs since, and all were chronically normal.

Tilt table test was normal, she does not have POTS


Normal MRI



But she is on a life-saving regimen of... things.


Ozone therapy?



IVIG



this is just a little OTT



Someone refusing to put a port in a perfectly healthy person, how dare they!

Got herself a port in August. What a great surprise!


And immediately starts fucking with it





She recently had her gall bladder removed and has made so many posts about it, you'd think it was exciting or something.


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