File: 1508812374249.jpg (20.19 KB, 275x149, 1500493920508.jpg)
No. 408576
Previous Thread:
>>>/snow/399180Discuss 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.Recent Cows:(yes there are A LOT; IG unless otherwise stated)chronicallyp
chronicallyruby
chloeschronicles_of_illness (insta) / Chloe's Chronicals of Chronic Illness (facebook)
diagnose rheuma (facebook)
endlessvoices
chronically.ams
hypermobileguy
outrageously_helpful_orion (jaquie's friend)
MyBlondeVoyage
onemorestep2
chronically_carmel / queerzebra (tumblr)
gorgeous_gatorade_princess / unicorn.spoonie
bendywarrior (tumblr)
karolynprg
twistedchronicwarrior
shelbiepaulley / beepaulley
servicedogpaws
ehlersdanlosgirls
littlemisswheeler
chloeprintlambert
borderline.mummy
Active Cows with Their Own Threads:kelly.ronahan / me_and_the_mr [
>>>/snow/381123 ]
chronically_jaquie [
>>>/snow/391202 ]
What Is A "Spoonie"?People who identify as 'Spoonies' are referencing 'The Spoon Theory,' written by a woman with lupus to explain the chronic illness experience to a healthy friend who asked her what it really feels like to live with her medical problems.
https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/The 'Spoonie' Community is, in general, a legitimate supportive network for people dealing with chronic illness. In recent years, however, it has become polluted with SJW types and has attracted a new breed of attention-seeking catfish: people who lie about, fake having, and/or exaggerate existing medical problems and crises for no benefit other than to garner attention.
What Is Munchausen By Internet (MBI)?From Dr. Marc Feldman, an expert in factitious disorders including Munchausen Syndrome, first described Munchausen By Internet in 2000:
>>…the advent of online support groups, combined with access to vast stores of medical information, enabled individuals seeking to gain sympathy by relating a series of harrowing medical or psychological problems that defy comprehension to misuse the groups.[1] Communication forums specializing in medical or psychological recovery were established to give lay users support in navigating often confusing and frustrating medical processes and bureaucracy. Communities often formed on those forums, with the goal of sharing information to help other members. Medical websites also became common, giving lay users access to literature in a way that was accessible to those without specific medical training. As Internet communication grew in popularity, users began to forgo the doctors and hospitals often consulted for medical advice. Frequenting virtual communities that have experience with a medical problem, Feldman notes, is easier than going through the physical pain or illness that would be necessary before visiting a doctor to get the attention sought. By pretending to be gravely ill, Internet users can gain sympathy from a group whose sole reason for existence is support. Health care professionals, with their limited time, greater medical knowledge, and tendency to be more skeptical in their diagnoses, may be less likely to provide that support.Links to Articles and Info on MBI:https://www.munchausen.com (Dr. Feldman's website)
https://www.thestranger.com/seattle/the-lying-disease/Content?oid=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 No. 408578
File: 1508812645438.jpg (463.9 KB, 1297x1658, FullSizeRender 4.jpg)
Sorry for reposting this from the last thread, but it was right before the new thread was made. Delete if not allowed.
GGP on her other account, stating she can't eat most foods. Kek,not if it's not come from Dunkin Donuts she can't…
No. 408599
File: 1508815052779.jpeg (349.8 KB, 750x1049, B5429B05-5001-4381-B556-BF7E54…)
bendycripple, ladies and gents, mooching more of tax payers. classic munchie using programs that would actually be good for those who need it… though I guess you could argue that she’s too mentally f*cked to get a job
No. 408613
>>408599What a fucking idiot. Energy drinks with POTS are a terrible idea! Also it pretty much invalidates her claims to have a plethora of heart conditions if she even considers drinking them.
(From the list on her tumblr:
mitral valve prolapse
long QT syndrome
postural orthostatic tachycardia syndrome
ventricular arrhythmia
inappropriate sinus tachycardia
other dysautonomia)
No. 408777
File: 1508853520105.png (1.35 MB, 640x1136, IMG_6498.PNG)
Claims shoulder is dislocated due to super severe EDS (uses knee braces and a wheelchair at the same time which is unneeded) covers "dislocation" with an emoji and posts video of her moving her middle finger and holding her arm up.
Yourlivingdeadgurl
She's also got Austin Carlisle wrapped around her little finger - he genuinely has a severe connective tissue disorder that has ruined his career in music, she's had several people that are famous in the alternative rock and metal scene push her wheelchair including the lead singer of "we the Kings" been following her a while. I'm not convinced she's got EDS.
No. 408973
File: 1508890000275.png (2.78 MB, 1440x2560, Screenshot_20171024-190336.png)
Wtf?
Also no precious central line and tpn for her! Just tube feeds and of course she has to add "well I'm going to try to mess up these tube feeds however possible so I can get a scary special picc and temp TPN because I'm so sick"
No. 408990
File: 1508893135612.png (1.46 MB, 1440x2560, Screenshot_20171024-195834.png)
Does anyone follow her personal account?
No. 409012
File: 1508901742599.png (239.83 KB, 496x598, you must have had some shitty …)
every time i go into the facebook support groups lookin for genuine tips i see cringey shit like this
No. 409018
>>409012SALT PILLS.
Heck. If you can swallow a pill, then you can eat some fucking soup.
No. 409025
File: 1508909977361.jpg (393.09 KB, 1304x1489, FullSizeRender.jpg)
Kat (Unicorn Spoonie/ GGP ) went to Olive Garden! How come these cows who can't eat anything because of their super bad stomach problems can eat this greasy shit? Whatever her stomach issue is, GP or not, this would NOT be recommended. She posted lots of pictures - the soup was cream based and covered in cheese too. Oh dear.
No. 409027
File: 1508910021058.jpg (237.08 KB, 1273x1482, FullSizeRender 5.jpg)
>>409025Does this chicken dish look fucking "light" to you?
No. 409037
File: 1508914490889.jpg (660.88 KB, 1260x1680, Phototastic-25_10_2017_b19d5ee…)
Here's some recent milk from Dani Endless Voices. Until the comments on this post, she wasn't really posting much about her symptoms. But after the concern from this follower, she spirals into munchiedom. I'll get those screencapped as well.
No. 409039
File: 1508914915065.jpg (422.79 KB, 1260x1680, Phototastic-25_10_2017_e2bd2e2…)
These posts followed the concerned comments.
No. 409043
File: 1508915266096.jpg (289.74 KB, 1680x1260, Phototastic-25_10_2017_8190bff…)
And two recent Facebook posts.
No. 409115
File: 1508936427752.png (1.01 MB, 1536x2048, IMG_0363.PNG)
Can we discuss this girl lily more photos to come
No. 409116
File: 1508936449327.png (2.53 MB, 1536x2048, IMG_0359.PNG)
No. 409117
File: 1508936469568.png (3.23 MB, 1536x2048, IMG_0364.PNG)
No. 409118
File: 1508936488918.png (3.68 MB, 1536x2048, IMG_0365.PNG)
No. 409119
File: 1508936509982.png (2.88 MB, 1536x2048, IMG_0366.PNG)
No. 409120
File: 1508936521841.png (980.13 KB, 2048x1536, IMG_0360.PNG)
No. 409128
File: 1508937796656.png (652.66 KB, 818x604, wtfruby5.png)
Speaking of munchies fixating on their pain drugs, here we have Ruby smugly posing for a hospital selfie.
I dunno about anyone else, but if I'm in extreme pain, I don't have the composure she's showing. Granted she's probably drugged to the gill, but still.
Of course, somehow fibro and CFS and a vaccine injury is supposed to put her in the hospital for something like extreme pain. Just aching muscles and shit. Ffs.
No. 409163
File: 1508943403673.jpg (465.38 KB, 1284x1881, FullSizeRender 6.jpg)
MyBlondeVoyage is at Breakspear having a 6 week holiday, I mean TREATMENT course. Her story shows she's been going out with friends a lot in London. I'm surprised she can eat this, considering she's still having "Allergy vaccinations" for things like lamb, broccoli, garlic and onions. She's taking the fucking piss.
No. 409164
>>409002>A full dislocated joint is one of the most painful things possible, and rare even for eds. It’s not a sit at home and take selfies event, it’s go to the er because you’re on the verge of passing out from pain.That
really depends. On a lot of things, but mainly on whether the dislocation was traumatic or atraumatic and how loose the joint is in the first place. It's possible to have a dislocation that makes you almost pass out, but it's also possible to have a dislocation that's more like "aw shit, can't get it back in by myself." I mean:
I wouldn't make selfies, but I don't get the whole oversharing thing in the first place.
Having said that.. that picture doesn't look like a dislocation at all. Not even like a sublux, but it's not like we can see that now, can we? And that's probably the whole point of that emoticon.
She definitely is actively lifting her shoulder (like a shrugging position) and while I guess it
is possible to be stuck in that location when your muscles go into spasm with a dislocation or subluxation, it also is
exactly the thing that actors tend to do when they have to pretend to have a dislocated shoulder and are creating some asymmetry to make it look like the joint is not in it's normal position. I'm sitting here trying to figure out in which direction the humeral head would be dislocated or subluxated for the muscles to hold it in that position, and to be honest I can't find it.
No. 409226
>>409166>>4092123.5 does in fact equal 35 in the US. Not comatose level, but definitely below the baseline of 70 (7)-100 (10) in the general population.
>>409002I have to agree with
>>409164on this one. Dislocations that happen due to lax joints as opposed to trauma to the joint tend to hurt less and you tend to get used to them in EDS. Not to mention it’s a lot easier to explain to the general population that your joint has dislocated as opposed to trying to explain what a subluxation is. Obviously, the munchies don’t differentiate because multiple dislocations sounds more severe and gets more asspats than multiple subluxations, but most people can’t wrap their head around the fact that joints can partially come out of place – they think there is an “in place” and an “out of place” and nothing in between.
No. 409436
>>409041What do you mean?
>>409039"My intestines hurt."
Omg..im dying at that comment.
I guess she is bored milking GP, or slowly working herself up to bigger and better things?
So her mild GP she fought (literally fought) for years for is not enough for her anymore, or getting to that point and she's probably growing tired of manipulating her situation for that precious tube.. I get a feeling that she still tubes herself off camera (wised up) as she leaves little evidence behind time to time. Also get the feeling that if her Drs wont set her up with tube feeds, she'll probably just tube herself and tell the internet it's an NJ temple placed. (Which won't go over well with the net anyway because shed be lacking everything that comes with the home tube feeds)
Now she's moving on to (or getting there) intestinal issues.
She must have already forgotten her intestines function just fine. Zero issue there like motility and poor absorption.
Just like her GI system will digest liquids with no issue, but suddenly she can't do a liquid diet because she is so nauseated, she couldn't keep liquids down, and liquids
trigger her super special anorexia.
And when she eats solids it's not even soft or puree.
The entire situation really just makes me have a gut feeling that once she's caught or backed into a corner she will throw back that her anorexia is so so severe and not just the worst her state has seen but the worst North America has seen, "look what my ED did to my body. I will never fully recover from this damage."
No. 409616
>>409568Concur.
10/10 pain is very, very rare. Most people do not experience it, ever, in their lives, and people have gotten shot, stabbed and subjected to horrific injuries without reaching 10/10. A 10/10 pain level is an acute medical emergency, as much as an MI or a stroke.
Now, nurses don't score your pain on a 10/10 scale. You do, and they put it down. There are specific pain instruments that need to be administered and scored by nurses, but the V/NAS scale, which is the one that goes 1-10 and is most often used, is entirely subjective to what the patient says.
Ps. In truly severe pain, analgesics don't knock you out but actually increase wakefulness as they pull you out of pain delirium.
No. 409683
File: 1509034659546.png (337.21 KB, 686x593, Screen Shot 2017-10-26 at 17.1…)
kek, Lily is in Chronicallyp's cow herd!
No. 409689
File: 1509036561981.png (539.25 KB, 540x927, Screenshot_2017-10-26-17-38-16…)
Yet another one running feeds at 35ml an hour and claiming weight gain…
No. 409774
File: 1509048326864.jpeg (151.83 KB, 749x746, 2BB4CBC1-6DDD-40B7-9A62-FDA7AF…)
Okay you guys, so I did some sleuthing on Facebook because Dani (endlessvoices) and found some interesting stuff, like this picture of her boyfriend who most of us (myself included) didn’t believe existed.
No. 409775
File: 1509048426079.jpeg (151.26 KB, 750x751, 7612C2AC-5731-4152-8088-14E4BA…)
>>409774Then there’s this one- she used to actually care what she looked like in pictures- like she looks happier too?
No. 409777
File: 1509048522637.jpeg (118.52 KB, 750x644, 8035EE98-B67A-4A03-81BC-D9860C…)
>>409775Is she diabetic? Does ED mess with your sugar this way? Like I know it can make it go down but? This is really high.
No. 409779
File: 1509048577784.png (1.17 MB, 750x1334, A7107CE1-4077-4B71-8EA4-A8E274…)
>>409777But my favorite is this one, for obvious reasons.
No. 409832
File: 1509053903737.png (598.59 KB, 720x1109, wp_ss_20171026_0001 (2).png)
Look who is having to miss another pageant. Nicole has been in hospital again just days before a pageant event she was excited about. Still not sure how nobody (including Nicole considering how much she understands about the psychogenic nature of her illness) has connected the dots between her planned pageant appearances and hospitalisations.
No. 409834
File: 1509054081045.png (332.4 KB, 709x988, wp_ss_20171026_0002 (2).png)
>>409832The hospital post from a few days ago.
No. 409988
>>409861>>409966She wants to have it though..she has been angling for POTs for a long time..and since internet has shown these munchies that GP,EDS,POTs somehow became the in style group of illnesses she must also have the other illnesses to be more specialer because mild GP is just not enough.
She has been going this way for a long time.
It's really a matter of time before she caves and starts on about having full blown Pots and eds online..shes going to claim them with or without an actual dr doing testing and diagnosis.
No. 409991
>>409777>>409779>>409808She's not diabetic.
In fact she has been called out on IG for testing her BS.
She bought the monitor and the supplies needed out of pocket for personal use. I will try to find the post on IG and share it here.
Basically she said she only checks it twice a month (I think) and only because she has a relative or 2 that is diabetic and she has to keep an eye on it..which makes no sense at all.
For a BS like that I won't be surprised if she had a type of sugar on her finger or had a sugar binge until it posted high enough.
130 and up is high
180 and up is high after eating
She's running so low on attention since she's switched her IG account again..this will get interesting.
She truly has no knowledge about blood sugar and diabetes and still tries to pull this type of shit. It's sad.
No. 409992
>>409774This is the ONLY picture of them and him.
He doesn't like his picture taken..
No. 410006
File: 1509067733673.jpg (920.59 KB, 1073x4246, Screenshot_20171026-202317.jpg)
1
No. 410008
File: 1509067747796.jpg (1.33 MB, 1057x6112, Screenshot_20171026-202418.jpg)
2
No. 410009
File: 1509067762656.jpg (1.48 MB, 1008x6283, Screenshot_20171026-202533.jpg)
3
No. 410011
File: 1509067817908.jpg (1.19 MB, 1078x5427, Screenshot_20171026-202650.jpg)
And it didn't even attach..sorry.
Last one
4
No. 410077
>>410067I'm not-very-dramatically ill, have about 5 medical/psych/social people whose care I'm under but I wouldn't call them a "team" because they don't do anything together as such. Only two even work for the same hospital. If I see my cardiologist, his findings don't go to my rheumatologist and vice versa.
But maybe it's just me being weary of Jaquie comandeering her "team". I'll stop now because this is getting decidedly off topic.
No. 410089
>>410008>>410011I like how she bounces between saying she checks it a few times a month to once every two months to once every two weeks depending on who is questioning her/what they are questioning her
>>409777I wouldn't be surprised if she tested without washing her hands - after eating candy (which I believe she says she always keeps in the house). I don't know much about BGs but I would guess it is easier to fake a high than a low. Although its interesting because most of these munchies complain of low BG and Dani is choosing to go high. She is clearly not gaining attention via the GP route so maybe its time to pick a new disease?
>>409779This post is from almost a year ago - she surprisingly hasn't jumped on the EDS bandwagon but she has been angling for a POTS diagnosis for a while but I don't think she can get any doctor to take her complaints seriously. I don't doubt that she wishes she could have EDS/POTS like the other munchies she worships. She gets called out enough for the BS she posts so I am guessing that is what has stopped her from claiming EDS/POTS recently
>>409037For someone who apparently has a history of being a pharmacy tech - she seems to know nothing about medications. She also doesn't seem to have a grasp of a regular doctor vs GI specialist. I do wonder who is prescribing all her meds since she doesn't seem to see her PCP anymore. And interestingly the smart pill test was really just for a research study - not for any diagnostic purpose. And she probably wouldn't have "flares" if she could control herself and stick to a liquid diet for more than 2 days.
>>409774I don't doubt that the boyfriend did exisit - I just wonder if he currently considers her his girlfriend. For someone in what is claimed to be a long term relationship and who lives close to each other - they certainly don't spend very much time together. I get the impression that he more or less just calls her up every once in a while to sleep with her. I don't blame him for not wanting to appear in her attention hungry medical saga.
She does look happier and healthier in the older pictures. She just spends so much time inside obsessing over imaginary health problems. She is one of the cows that would benefit most from leaving her house and getting some sort of job or volunteer position.
Thanks for sharing the new (and old) milk about her - one of my favorite cows. I have been considering requesting her private IG since I know she won't be able to resist followers despite claiming to want privacy.
No. 410092
>>410089You can't fake low blood glucose as far as I know.
Once I felt a bit wobbly while in the kitchen, and tested my sugar in case it had dropped, and it read simply "HIGH" meaning so high it was out of testable range. I'd forgotten to wash my hands first and I'd been making cinnamon rolls…
No. 410154
>>410016>If it counts for anything what people refer to as a permanent tube is not permanentO, I know. I just refer to it as permanent as opposed to a nasal tube, if that makes any sense. Normally when you only need feeds temporarily you'd get a nasal tube. If it gets more permanent (whether that is
actually permanent or just "very long term and probably permanent") you start looking at the PEG/PEG-J/GJ/J etc. options. And while it is
reversible, it will still leave a permanent scar.
It's just a whole other ballgame compared to a nasal tube you just pull out and everything is back to where you started. That's what I mean.
No. 410167
>>410092Yes, you can, admittedly, it's not very practical. I found this out by mistake once, similarly to you. Except I did wash my hands… I just didn't dry them. The residual water diluted the blood and I got a LOW reading, but oddly enough, no error. Retesting with dried fingers, I got a very normal 5.0.
HbA1c, on the other hand, is reportedly impossible to fake indeed. Dilution won't work either, as the value is a fraction of the glycated hemoglobin in all hemoglobin in the sample.
No. 410252
>>410198She can try but like it was mentioned it will be impossible for her to do at a medical level any Drs actually care about/will worry about..temple will just tell her to adjust her liquid diet or tell her to use the fodmap diet and/or liquid diet.
She'll be upset they don't freak and want to send her to an endo. Specialist
She can manipulate very little with prn bs checks, but her A1c has always been normal and that's the important part.
No. 410357
>>410006>>410089I love her comment "I'm not officially diagnosed."
I know I'm not the only one picking up on the wording here..
Runs in the family so her Drs want her to check it time to time (which in Dani terms means she checks it when wanting new and different attention and for no medical reason.)
Just because diabetes runs in the family doesn't mean dani is also diabetic or ever will be and with no symptoms and indicators her Drs are concerned about there's literally no point in her bragging posts (look how sick I am. Look at all my numbers. They don't lie type bragging)
"Not officially diagnosed"
Priceless.
No. 410364
>>410357>I love her comment "I'm not officially diagnosed."Made me laugh as well. You see, it's not exactly a lie, but sounds SO much better than "no, I'm not diabetic in any way, shape or form."
"Well.. I'm not
officially tested as the smartest person on earth, but…"
"I didn't invent the internet per se, but…"
"I'm not
really an alien from outer space, but…"
No. 410576
File: 1509150107089.jpg (783.28 KB, 1045x1883, Screenshot_20171027-192010.jpg)
No. 410635
File: 1509155090608.jpeg (191.24 KB, 750x1005, 1A8F9267-3FF4-4817-8E3A-BA1A48…)
Woohoo! Actually being productive and got a job…
1/3
No. 410636
File: 1509155161966.jpeg (558.14 KB, 750x956, 2EEAD9C3-FD59-41C9-95C3-548576…)
Quits job after TWO SHIFTS bc sitting at a cash register all day was too serious for her POTS
2/3
No. 410638
File: 1509155252722.jpeg (198.76 KB, 750x1088, FA5C5095-AAC3-47A1-A56E-158D97…)
Now gunning for a port, because the at home infusions three days a week aren’t enough anymore…
3/3
It’s annoying amusing watching this one spiral into munchieism
No. 410645
>>410638Haha wow that was a quick turnaround.
US POTS anons: are saline infusions considered standard treatment over there? I've never heard of non-hospitalised POTS patients getting them here in Europe (for like, emergency treatment).
No. 410650
>>410645They’re not standard per se, but they have pretty good efficacy if you experience hypovolemia due to POTS. The increase in blood volume can help minimize symptoms, but if you’re only using it for the tachy (like most of these munchies are doing), it become less effective quite quickly.
On the upside, many of these munchies are probably dehydrated instead of having POTS, which means the saline is probably actually helping them. But the downside is that insurance or taxpayers are paying for $400 salt water multiple times per week because these little shits can’t (won’t) drink water and increase electrolytes.
No. 410659
>>410653Getting a job but stopping after two shifts isn’t commendable, though. Yeah, it’s better than the lazy munchies but there are a TON of people with
severe chronic illnesses who have long-lasting jobs. Sure, sometimes it causes us to have worse days, but it’s effort.
No. 410678
File: 1509158598488.jpeg (504.27 KB, 750x680, 1F8B2699-95A0-4417-B5F5-B22CE1…)
Jaq’s friend is spiraling further into Munchiedom by starting… dun dun dun… A PATREON kek
No. 410688
>>410683Exactly.
But you can get multiple infusions each week without centrals and these people don’t seem to understand that. There are so many risks of centrals that rarely outweigh the risks.
No. 410695
File: 1509160825371.jpeg (228.68 KB, 750x949, AF827269-D1BC-4790-B700-C21A80…)
bendycripple
I’m assuming that this is not good for all of her supposed GI issues.. idiot. “Sever” (it’s SEVERE with an “e” at the end) gastroparesis, cyclic vomiting, and IBS would not be nice to you with flaxseed or shredded wheat.
Flaxseed alone can cause GI side effects such as bloating, gas, abdominal pain, constipation, diarrhea, stomachache, and nausea in healthy people. Shredded wheat is dense and is hard to digest in normal gastric transit.
But I don’t her you complaining about barfing or shitting herself like she seems to enjoy updating everyone on, so… guess she’s very much lying about her GI issues because this doesn’t add up.
No. 410769
Angie is supposedly planned to go to a hospital (finally)
https://skagra3482.tumblr.com/post/166573039807/the-remainder-of-my-life-could-be-marred-byHowever she is back demanding money to purchase a spine-board (which shes been asking for for years - why hasnt she gotten one yet?) so people can transport her properly. She seems to paint a lot of health workers very, very, very negatively and speaks theoretically about what can happen to her. Also revealing doctors and nurses made her walk and stand the last time she was at a hospital seems to me show a discrepency in what they think is wrong vs her own opinion. Angie reveals a lot more information about her situation through this stuff than her actual documents.
" The spine board could prevent a repeat of my mistreatment in hospitals w/ limited resources. In 2014, ill-equipped patient transport staff dragged me upright & forced me to walk (and collapse). When patient transport wasn’t arranged in 2013, hospital staff wanted to institutionalise me for lying down outside to wait for a taxi. While severely injured, I had to stumble outside a huge hospital campus to escape them and seek help from a stranger to get home."
Is it getting pretty clear a good portion of her disability is in her head?
No. 410776
File: 1509175121214.jpg (294.68 KB, 1680x1260, Phototastic-28_10_2017_a25df60…)
The results of Dani's Neurologist appointment.
No. 410785
>>410781It's a common duality. I just watched some possible-cow's (definitely OTT) Instagram video where they talked about how they were currently having the worst migraine of their life, couldn't stand the light etc (despite holding the phone up to their face to record).
Same OTT maybe-cow described themselves as "bed bound" then a few hours later posted a pic of themselves making cakes. Like, yeah. I don't think you know what "bed bound" means.
No. 410881
File: 1509203391670.jpeg (532.7 KB, 750x1013, 6CD88FEC-FC5C-4ED7-9886-D6564C…)
This girl looks like she’s slipping into munchiedom
No. 410888
File: 1509203891258.jpeg (431.2 KB, 1936x1936, 01007CA2-D903-4645-A6CC-21A9F3…)
so much health drama with bendycripple. if it’s not a psychosis or suicide issue, it has to be some bizarre occurrence caused by her “very sever” vascular EDS. I’m gonna say eardrums don’t spontaneously perforate even in fragile types of EDS…
No. 410994
File: 1509217153608.png (180.74 KB, 750x1067, IMG_5188.PNG)
'boyfriend' gets mentioned on here again
existence of said boyfriend questioned… again
>OMG GUYS LOOK AT MY OUTFIT IM GOING TO SEE MY SUPER REAL, TOTALLY NOT A FIGMENT OF MY IMAGINATION BOYFRIEND
Stop lurking on lolcow and making up illnesses and boyfriends and get back to actually doing something with your life Dani. You had a good job that allowed you to not only help yourself but to help others. Go back to that. Anyone in ANY kind of recovery, be that ED or addiction, will tell you that having a focus outside of yourself is important.
No. 411048
File: 1509224046294.jpeg (342.95 KB, 750x1167, B523E702-E54C-407B-A0E2-6615E1…)
Well this one is interesting. May be ill, but is definitely OTT about how bad she is and how others treat her. (OP is the same as reblogged person)
No. 411064
>>411048She LIVES IN THE UK, what the fuck. Can't believe she's whining about lack of support and wanting to move. This is an incredibly safe and secure country to be disabled in compared to the majority of the world.
Not pro DWP or anything, but she's delusional if she thinks she'll be better off (almost) anywhere else. While people who deserve to be on benefits do regularly get rejected, they also reject people who shouldn't be on them.
No. 411081
>>411048She could just get a flu vaccination but I guess that wouldn't get her as much attention as a mask.
>>411064Right! Also the rate of successful appeals for disability benefits is pretty high (probably because it's mostly legit applicants who bother going through the process)
No. 411084
>>411081Further exploration reveals she has fibro, the wheelchair she wants is a powerchair (she probably has no chair at all since there's a manual on the wish list too - for all that people love to bitch about Wheelchajr services, they do get you a chair or a voucher quick enough if you
actually need it), and she's around a U.K. size 20.
No. 411092
File: 1509229114784.jpg (254.87 KB, 1080x1535, Screenshot_20170929-231830_01.…)
This account just appeared as a suggested account for me to follow.
I don't think anyone could take a photo of them having an absence seizure, even if it is psychosomatic.
No. 411139
>>411048This is the most disgusting thing on this forum I've ever seen..omfg.
She needs to not drag everyone around her down and be thankful for what she still has. Not lost of a cheap gift list..lost it at wheelchair. Not cheap!
No. 411141
>>411092She albino?
Her eyes are telling me albino
No. 411160
File: 1509235948474.jpg (442.63 KB, 978x610, ott.jpg)
- collapsed thanks to severe nerve pain, in the ER they noticed her weak pulse and high blood pressure,they checked for a lung embolism
- emergency doctor wanted to give her Ketamine and the doctor at the hospital only gave her some weak painkillers
- didn't sleep for 7 days, but can take photos, that aren't blurred
- she's even able to write a blog entry without grammar or speelling mistakes and it's really long!
- they told her to stop screaming, because there are other patients
When you notice that you got poked 12 times you obviously don't need Ketamine. And being able to take a "good" photo is also a clear sign, that you aren't in so much pain. I'm still wondering how she's able to keep her 9k followers while being to OTT? How can you believe such a story?
No. 411206
File: 1509241383915.png (30.64 KB, 516x624, wtfsock.png)
Also found on sockknitteranon, a bunch of bitchy munchies citing a now dead link about not exercising bc waaah paaaaain.
The dead link was to some article about how exercise doesn't help chronic fatigue syndrome. Y'know: the only pain syndrome that has no biological basis, and what 3/4s of these munchies bitch about.
So here's something: almost all pain syndromes that are biologically based, and not due to trauma, can be relieved by mild exercise. Hell, even the ones due to mild trauma can be helped by exercise. CFS just has to be so special snowflake that golly nothing can help but ridiculous amount of drugs and wheelchairs, you guys!
Fuck me, I guess my myositis isn't nearly as serious as these people's CFS, since moving around helps my muscles feel better. Gosh, I haven't considered how privileged I am for being able to medicate with exercise.
Please excuse me while I jog to the river and drown myself.
No. 411208
File: 1509241612685.png (39.09 KB, 564x684, wtfsock2.png)
>>411206Sock likening her fibromyalgia to smallpox and being an incurable disease. I love this woman, it's like she never emerged from the melodrama of LJ.
No. 411259
File: 1509250495800.jpg (278.35 KB, 1264x1809, FullSizeRender 7.jpg)
LittleMissWheeler has multiple anaphylaxis causing allergies and doesn't know what causes all of them. Therefore, this seems a totally sensible place to go for dinner.
No. 411299
>>411214Which makes the exceptions all the more shocking and wasteful: Chloe Print Lambert, Chloe Prinf Lambert
eyerollAnd Paige. No words.
No. 411338
File: 1509274609711.jpeg (1.03 MB, 3797x3797, 0EB9CB0C-4B32-4FA5-9953-9C8D20…)
Can we talk about how chronically.ams edits her pictures to make her look skinnier? Screams ED.
No. 411354
>>411338Wow, that's bad. I am really bad at spotting things like this, but like the other anon said: this is not subtle at all. Meaning even I can see it.
Also: how long has she had her NJ for? Shouldn't she be at a more healthy weight now? The earliest post I found of her with a nasal tube was november 2016, though I believe there is a tube-free hiatus between then and now. But still: she should've gained a good amount of weight. It seems like she gained
some weight, but she still doesn't look like she is at a healthy weight.
There is also a picture somewhere of her at a BMI of 14 where she also sucks in her stomach for good measure for "feeding tube awareness". I've been in that bmi-range, and I would definitely NOT have wanted anyone to take pictures of me. I'm not saying I was ashamed of it, but.. well I was, to be honest. It's nasty. It looks nasty and it feels nasty, it's painful and it made me feel very self-aware. I don't get why people want to pose like that in front of a mirror and take pictures of their emaciated body,
unless they had an eating disorder.
No. 411372
>>411259She's also using make-up and facial masks, so going to that place for dinner isn't odd at all.
Why are they still trying to rule out MCAD? It has been a year now and they are still looking for an explanation.
No. 411376
File: 1509284241427.jpeg (83.54 KB, 640x548, A918C800-E2F9-4C30-8C7F-79F88A…)
Back in the hospital using an array of precious resources for a psychological problem.
Having the NG tube back hasn’t resulted in ER avoidance at all!
No. 411378
File: 1509284298050.jpeg (297.87 KB, 640x903, 48F06123-9B8F-4378-AFA0-971F2C…)
>>411376Care plan and care overseen by Psychiatry; says it all really
No. 411389
>>411378I have lupus. It attacks my brain in addition to my skin and lungs. Until I had four of the eleven criteria observed under medical supervision, I was in and out of psychiatric appointments for years. My symptoms were written up as part of my anxiety disorder.
Since being treated for the autoimmune and not the psychiatric, my symptoms disappeared completely, and so did the anxiety.
Sage for self blogging and white knighting.
No. 411407
>>411389It seems you're not terribly familiar with Nicole. Nothing is wrong with Nicole other than having an ED and making herself throw up. The other anon isn't saying that Nicole isn't sick because she's seeing a psych. Initially, Nicole had been saying that gastro had been overseeing her care, and milking that to show how the doctors really did think she was physically and and how she wasn't somatizing. Gradually, after she started attending therapy, she admitted she had a somatic disorder.
Now, that a psychologist is overseeing her care, it's more likely that everyone on the team has agreed that her somatic disorder causes most of the problems. I have no idea about adrenal insufficiency, could be another thing she's faking.
Initially she faked the asthma she claimed to have forever, until it turned out her "asthma" was actually her breathing weirdly during panic attacks, and food allergies. So, don't worry my dude. No one is saying anyone is less sick because part of their illness fucks with their brain.
Otherwise we'd have to ignore epilepsy, MS, meningitis, etc, etc, etc.
No. 411491
>>411258Obviously you didn’t read the post well then. It said “MOST (NOT ALL) people with EDS”. We get it, fat-shaming is bad, but that was not what was done here. Only a
minority of EDS patients, even those bed bound, will put on significant weight. A
majority of cows claiming EDS are way more than a little overweight (and many of them were so before their “EDS symptoms” even popped up). The point was that these cows made a minority seem like a majority, not that it never happened ffs.
you’re as bad as the munchies if you’re coming in here and defending yourself on your weight and precious hEDS not letting you exercise.
No. 411583
>>411491Yep I have hEDS and whilst I am not the smallest I've ever been by any means my heaviest is a mid-range healthy. Being bed bound doesn't = obesity, you get muscle wastage which leads to weight loss!
hEDS can swim/ aqua aerobics especially if comorbid with any POTS/ syncope issues. Literally floating in water can be exercise!
sage for semi-blogging
No. 411631
>>411583Yeah, I have somewhat bad EDS - not totally bedbound, but mostly - and I can barely stay at a minimum healthy weight. No ED and no GP to stop me from eating, it's my metabolism. I get weird EDS nausea but basically I can eat fine (like 99% of the liars on Instagram can) most of the time and my food is indulgent as I struggle to keep weight on. So called EDS-ers who don't look marfanoid at all are probably lying about their diagnosis, like they do about everything else. Or got "diagnosed" by a very stupid doctor like Jaq's.
Saged for blogfagging despite being on topic.
No. 411636
File: 1509318221026.jpg (868.69 KB, 1440x2194, Screenshot_20171029-175854.jpg)
It seems like
Some one dipped into 2 or 3 of their medications again?
I'm not sure but felt this needed to be shared.
No. 411650
>>411631People who don't look marfanoid are lying? You knoe it's not a major criteria, right?
I met loads of hEDS people at one of the conference and only some of them had that, but i'm pretty sure most of them actually had hEDS
Saged
No. 411658
>>411652And even in cEDS, like I mentioned in my OP about the topic, you don’t tend to see true marfanoid habitus, you see marfanoid wingspan, spindly fingers, the torso-leg ratio, and
typically a shorter stature than the rest of their non-EDS family members. No facial feature, no abnormal height. But definitely the slenderness and typically an overactive metabolism.
While it’s not a criteria in hEDS or the other types, it’s pretyy indicative.
No. 411661
>>411650Kek, guessing you're overweight, then. No one said it's
impossible to be bigger or that people will look the same as someone with Marfan's. But the first OP who brought up the topic way back in the thread was right that there are loads of people claiming EDS who have joint pain because they're fat.
like probably you given how butt hurt you sound.
No. 411666
>>411650Most people who go to the conferences are exactly the kind of OTT whiners we mock, half of them have probably manipulated their way into the diagnosis in the 1st place. Sooo, why were you there? If this is the EDS Society you're talking about, we all pretty much know they're shit. They supported and publicized
Carmel of all people.
No. 411667
File: 1509321579469.jpeg (413.78 KB, 750x875, 5A96F26F-044D-42F6-A6D8-9C680D…)
But we should get back to actual milk and not argue about EDS. I just made a statement regarding how these cows probably don’t have it because x.
Guess who’s suicidal and hearing voices again since she’s not having some physical crisis? Her burst eardrum healed up quick…
No. 411702
>>411699You can develop it. My friend was diagnosed when she was about 30.
But yes, the tell with Nicole is she'd mention ANYTHING that could be an actual illness.
No. 411712
>>411699She has mentioned it before, I can't find where though bc it was awhile ago, however if you look at the symptoms of adrenal insufficiency they are the same as her psychosomatic issues… nausea, vomiting, lack of energy, weight loss… JBN has an ED, bulemia most likely(she seems to be able to keep down sweets that she eats amazingly) advanced bulemics do not need to do the typical purge and pretty much are able to vomit by just the feeling of food in their stomach. It's obvious that Nicole was drastically overweight and didn't get much positive attention until she started to lose weight. . . Massive kek, just go to therapy Nicole, you would massively benefit if you were just honest with your therapist and actually went to your therapy appointments!!!
Sage for repetition and addressing the OTT munchie herself
No. 411740
File: 1509329947332.png (2.46 MB, 1536x2048, 4B86FA33-D92A-404D-9CA5-3DE637…)
Terrible as usual. Can’t eat anything at dinner but can eat her favorite chocolates…because they’re sugar free. (Sugar isn’t the problem in chocolate in GP, it’s the fat). Hello attention whore with nothing more than an eating disorder. Good thing they gave her that tube to purge with.
No. 411750
>>411742Honestly Angie makes me sad because she's clearly very very mentally unwell and completely unwilling to accept any medical help. Her absolute refusal to go through any psych evaluation makes me leery of her - anyone bedbound and in the condition she says she's in, relying on donations and carers, would have mental health issues - so refusing ANY psych help makes her seem overly defensive. Plus, she's in Sydney - yes, hospitals aren't perfect, but the medical care she's going to get when she is admitted will be the best public care in the country. She should accept the psych help offered to her; she won't be insitutionalised because she's not a danger to anyone, and they'll be able to help unravel her mental and physical health issues (I think she does have some, but with a lot of mental health overlap).
Blog for context - I've been sectioned in a Sydney hospital and while it's terrifying to be held against your will, the psych care here is the best it can be. Life in a psych ward would still be better than what she says her situation is.
No. 411756
>>411750I agree with all of this and feel really sad for her too since a lot of her health issues and quality of life seem self imposed (I guess like a lot of these cows) and that's just sad.
I know someone who has a friend who has seen her in person and it's been reported it's really bad. I really hate that she's using people the way she is. But maybe she truly doesn't know any better? Her defensiveness really kicks in at any provocation or advice from others…
No. 411778
>>411774I mean she's an awful person attitude wise and her current model of living is obviously unsustainable. I'd like to think she cant help it but ya know…just wish she'd relent.
Shouldn't she be taxed for all these donations?
No. 411793
>>411691She might be being honest about the adrenal insufficiency as it’s a known complication of steroids used to treat asthma (she’s previously had a lot of steroid based asthma treatment hence the previously high BMI)
Convenient though as it gives her the perfect excuse to run to the ER all the time otherwise her care plan might have said give IV fluids and IV anti nausea then discharge (i.e don’t indulge her somatic disorder by admitting to the hospital)
No. 411858
File: 1509354658754.png (211.65 KB, 720x1046, wp_ss_20171030_0001 (2).png)
Dan wants to try and get a service dog again. Not sure what for exactly. Not sure what a dog could do to help her.
No. 411872
File: 1509360141242.jpg (571.94 KB, 1080x1657, Screenshot_20171030-104105_01.…)
No. 411896
File: 1509368769635.jpeg (484.75 KB, 750x1094, 6DC7F760-6CED-450A-99E4-C0FAE6…)
Hoping her GES shows something. It’s my favorite when munchies claim they want tests to come back positive because they “want answers” Autum will be gunning for a super special toob before 2017 is up! Mark my words!!
No. 411927
>>411858A service dog for what? Would it eat all the solid food in her apartment so that she is forced to stick to a liquid diet?
A pet would probably do her some good - give her something else to focus on besides herself and get her out of the house a little if it needed to be walked. She does more harm sitting at home obsessing over anything she thinks could be a medical problem. But it wouldn't be a service dog - at most it would be an emotional support animal (although we all know she would claim it was a service dog).
There is no way that she would be able to qualify for a service dog through any sort of charity. And probably wouldn't be able to afford a dog otherwise. She whined about her food stamps being cut (does anyone besides her actually call them food stamps anymore) so how does she expect to food herself and a dog.
And please - no blogposting in response about how your emotional support animal is a lifesaver or how your service dog has cured your POTS.
No. 412225
>>412134Probably because most of these cows can't think of anyone besides themselves - all other living (and non-living) things are just placed on this earth to serve them.
A service dog must be worth at least +100,000 spoonie points so consequences be damned. They don't see it as a living creature but rather as another attention grabbing tool to cross off on the ultimate spoonie checklist.
A service dog is a glamorous spoonie accessory. Plus you can make it its own IG to really show it off and try to get it to go viral doing tasks it doesn't need to do.
I have seen it questioned on here if the next munchie accessory will be an ostomy bag. I think there is a reason why these munchies lean towards tubes, ports, braces, wheelchairs, and service dogs but not ostomy bags and the like. They see some sort of glamour in them. However, there is little glamour to be seen in having a bag of poop hanging off of you.
No. 412268
>>411742Is it just me or in her supposed “medical reports” she links, she’s never actually even diagnosed with CRPS? And the one “neurologist” even admits there are zero actual visible symptoms of any problems…? Kek.
Can’t brush her teeth because she never gets out of bed? Wow. There’s some crazy munchies here that we all discuss, but hell, this chick is a fuckin shitshow.
No. 412328
>>412225This is why the IG spoonies that I find most believable are the ones with IBD who are fairly open about the unpleasantness it causes for them. There are a few of the EDS and POTS people who I believe are completely legit, but I won't name them as they'll just get picked apart. But even though she can be a little attention seeking sometimes, I think it's easy to tell that someone like crazycrohnie is really ill and not making an ott big deal out of nothing.
Does anyone follow accordingtokenz? I couldn't get caps as most of it was short videos in her story, but she made one hell of a fuss in hospital about her first doctor and had to get switched to another, then floated about the first one apologizing. The whole thing seems sus. He wanted to take her off her pain meds and discharge her - maybe thought there was nothing seriously wrong? Now the doctor she has is supposedly commenting on how complex she is and shit. It rings alarm bells to me. I used to believe in her unquestioningly but now I don't know.
No. 412347
File: 1509443303880.jpg (450.4 KB, 1260x1680, Phototastic-31_10_2017_d3ec432…)
The latest from Dani.
No. 412348
>>412225>>there is little glamour to be seen in having a bag of poop hanging off of you.I think you are right about that. I too have wondered what the next thing would be, but somehow I don't see an ostomy would be it. Although there are very 'cute' ostomy bag covers, I think anything to do with poo and pee wouldn't do it. Plus, the feeding tube thing is very heavily linked with eating disorders and being skinny in general: it does provide pity points, but it also gives them an excuse not to eat in public. Or to be very specific about what they will or won't eat. With an ostomy, if it is working like it should, no one knows you have one. And the thing that would provide pity points is having a lot of leaks, and nothing can make being covered in your own waste make cute or glamorous. Also, even with a surgical feeding tube it is still a minor operation, while ostomy surgery is a bigger 'investment', so to say.
Although someone here said that a continent urinary diversion is popular in some circles nowadays, so who knows. But still: sticking a catheter in your belly button to pee is probably still more glamorous than having a bag of pee attached to your belly? I don't know.
Still, I do wonder what the next thing will be. Someone suggested oxygen, but I'm not sure. It has to be something that will provide continuous pity points, like a tube or a regular infusions through a port. Not something that will actually solve a problem for good. Maybe gastric stimulators will have a short burst in popularity because of that Raven girl in the US, but it seems like most people in the GP crowd rather have a tube than something that comes with the expectation of recovery (at least for lay persons it does, I assume). So they will probably move on to the next thing.
No. 412358
File: 1509445100523.jpg (217.63 KB, 1731x996, Phototastic-31_10_2017_5a9b265…)
Danis recent Facebook posts
No. 412366
>>412348Suprapubics are on the rise, and some EDS cows are claiming Fowler's syndrome, which is not all that surprising given that Fowler herself identified enkephalin toxicity as one of the causant mechanisms (and most EDS cows are on some opioid).
I've also seen some angling for spinal cord stimulators, for no good reason (SCS has no evidence base in genuine orthopaedic pain as EDS would cause, and arguably it may not even be a good idea to have with dysautonomia).
Wheelchairs, especially the big bulky look at how sick I am kind, are on the rise among Munchies. As are C-tubes and MACEs: as a gastro registrar, I've seen maybe three MACE patients. In the last year? I've seen five people, all young women and giving off an odd ED vibe, angling for one. They were distinctly uneasy when I asked them how they even knew what a MACE was (unless you care for a LOT of patients with constipation, which tends to be the case where e,g, you have a large neurological population but is not the case with us, a regular hospital that ships most of its neuro cases to a tertiary ref, you do not encounter MACEs all that often…).
Oxygen is definitely on the rise, it's not hard to get (you can even get commercial oxygen bottles) and it's "totally like The Fault In Our Stars" (overheard in the waiting room, grrroan…). As a general rule, I do not approve requests for oxygen because I'm a fucking gastroenterologist, but I know some docs who do it for patients who have been with them for a long time, whether they know them well enough or not. In general, I tend to offer patients who push me for it an admission to the respiratory unit (a dreadful place, having spent a week there with pneumonia once, I got maybe ten minutes of sleep and left sicker than I got in), and a shed load of arterial blood gases. In case you're unfamiliar, or the patient is, I tend to describe it as having a red hot poker jammed into your wrist, because that's basically what it feels like. Suddenly, a lot of people are no longer all that peachy keen on it.
For non-UK fags, IVIG is all the new rage. Buddies from the hospital where I used to work in the States (mid- to large base hospital somewhere in Virginia, caring for a very mixed population: servicemen/women, dependents, military wives who somatise their anxiety about their loved ones, kids who make themselves sick so their dad comes home from deployment… we did have an unusual amount of factitious illness, sadly) tell me that patients are pushing for IVIG a lot, and because IVIG is not rationed for a small closed list of conditions the way it is in the UK (indeed, IVIG manufacturers are more or less pushing the idea of IVIG being a treatment for any immune
dysfunction as opposed to
deficiency, and so should be considered a possible treatment for any and all autoimmune conditions, and doctors tend to rationalize it away by saying that they're actually saving money because IVIG does not have the immunosuppressive side effects - infections in the short term, malignancies in the long run).
No. 412396
>>412366So, how does that even work? They come to see you and say "hey doc, I was thinking about a MACE, that sounds good"? Or "what about some oxygen, eh?" I've had a few procedures in the past and I use meds, but I can't remember me ever
asking for something. It was always "these are your test results, we need to do X". Or sometimes "there's a few options, namely X, Y or Z."
Do they just straight up ask for something, or is it more subtle? Like "I've been irrigating rectally for some time, but it's so hard to reach back, are there any other options?"
No. 412495
>>412439I think thats how a lot of well meaning people get sucked into the OTT spoonie bordering on munchie hole. People who may have a legitimate illness turn to the internet for support/advice. They find this great spoonie community of people who supposedly know what they are going through. And while people can pretend to be supportive of each other, there is some sort of competitiveness behind it. If you are only dealing with issue X, then clearly you are inferior because someone else is dealing with issues X, Y, and Z and wouldn't they be happy to only be dealing with issue X. The more equipment you have the less someone is going to question if you are really sick. Plus social media makes it seem like these issues are a lot more common then they likely really are. Social media algorithms will suggest/show you people who are similar to people you follow/view. Half these people probably turned to social media because they couldn't find anyone in their real life who was dealing with the same problem but all the sudden you a group of people who may live all over the country but are right there in your living room and it makes it seem more common. Plus it encourages these people to hyperfocus on every little symptom/twinge because it could be something serious.
Even with the legit munchies - how common is it really? I would assume the numbers are increasing thanks to social media (I have worked in geriatrics and have never encountered a patient who seemed to be a munchie - but most of my patients don't access the internet). Sometimes I think that IG shows us all the munchies because we look at some munchie profiles.
No. 412700
File: 1509497016845.jpg (444.18 KB, 1057x1389, Screenshot_20171031-194015.jpg)
Sure Jan.
No. 412747
File: 1509506545944.jpeg (208.53 KB, 750x611, D12B9A7F-7BF7-491C-A2F8-DF2551…)
bendycripple is so full of shit kek
>>I have actual demons inside of me
attention whoring, much?!
No. 412750
>>412707While many people do not need to continually replace their NG tube, people whose tube may come out more frequently are likely to be taught how to insert a new one - parents of kids with NG tubes may be taught to reinsert the tube if the child is likely to displace it due to vomiting or pulling on it - better than having to go back to the hospital every time it comes out. Someone like Nicole is probably taught how to reinsert it because since the chance she will displace it due to vomiting is high - otherwise she will have another reason to run back to the ER every five minutes.
That being said - I see no reason to make an instructional video (I haven't watched hers) about it as it is definitely not something that anyone should try to learn via video.
No. 412754
>>412745Sounds like a lot of uneccesary risk for losing a good motivator for adhering to the recovery program (tube removal)
Hate to get medical treatment where you’re from tbh.
No. 412827
File: 1509520265797.jpg (329.37 KB, 1080x1364, IMG_20171101_080905.jpg)
So this happened in one of the POTS groups I'm in. Almost all comments were explaining how to fail the test and only one or two people pointed out the ridiculousness of this post.
No. 412845
>>412707I can. It saves time and costs, plus it is more comfortable because you can actually
feel in what direction you need to push the tube. It's quite common for people who either need one for longer then say two or three months, or who only do night feeds. You place your own tube in the evening and remove it in the morning. The alternative would be having a nurse come by twice every day OR walk around with your tube all day while you aren't even using it - with all the heartburn that a tube can cause, especially on an empty stomach.
Parents tend to place tubes for their little children and teenagers or grown-ups place their own tubes.
Most things you need to do long term that don't require special equipment you can learn to do yourself. If you aren't too squeamish. Just how people needing B12 injections are taught to do it themselves or how you learn to self catheterize, irrigate your colon, change a G-button, etc.
I haven't seen her video so I can't comment on that specifically, but people placing their own NG tubes is not strange OR special. It's done every day by lots of people.
No. 412847
>>412827That's… bad. You could say at least they are being honest about it, but the fact that the majority was explaining how to 'fail' it is quite worrisome. I'd be asking myself if that is how
they got their diagnosis?
No. 412858
File: 1509530493665.jpg (138.72 KB, 720x1280, _20171101_110019.JPG)
1/3
No. 412859
File: 1509530511696.jpg (142.32 KB, 720x1280, _20171101_105945.JPG)
2/3
No. 412860
File: 1509530529977.jpg (140.85 KB, 720x1280, _20171101_105907.JPG)
3/3
No. 412872
>>412827I question everyone who stays in these groups tbh (unless you're there for milk!)
All the FB groups are full of 'how do I get diagnosed' questions. You just have to post you have a headache and someone will comment about how you have a CSF leak!
POTS is a 100% manageable condition, if you already know that salt and water helps then why go to a specialist?! It isn't a dx that (in the UK) would lead to different treatment, benefits etc!
sage for blogging/rant!
No. 412910
File: 1509542583193.jpg (968.78 KB, 1564x1564, IMG_20171101_142159.jpg)
Another one from this group. Apparently one picture is enough to diagnose EDS.
No. 412911
File: 1509542656818.jpg (275.94 KB, 1080x1522, IMG_20171101_141943.jpg)
A lot of them also insist that POTS causes heart attacks and get angry when they are not allowed to tell the 'truth'
No. 412950
>>412901I'm a fan of this entertainment!
sage for blogging
When I got dx'd EDS I'd never heard of it going online to find all these communities was a shock and definitely made the dx more scary than it is (I have hEDS it is definitively NOT scary!) suddenly people were on about extreme medical emergencies suddenly happening to them having previously been healthy most of their lives.
No. 412970
File: 1509549502729.jpg (577.79 KB, 1125x988, dog sweater.jpg)
Top kek. Spoiler image because this is disgusting. The Frey Life (if you don't know, a CF patient who is quite OTT) made a sweater out of Mary's dog's old hair scraps… I thought you had to be careful of germs with CF? They literally glued his hair to a shirt…
What's with these OTT Spoonies/Munchies and their stupid service dogs? You only have to browse an illness hashtag for a few posts before finding some stupid dog.
No. 412991
File: 1509551049060.jpg (5.88 MB, 4032x3024, kek pots dog.jpg)
>>412982Instagram is a fucking goldmine
No. 412999
>>412991So glad this was brought up. I fucking hate "POTS Service Dogs". Like sorry you don't need that…
sage for non-contribution
No. 413012
>>412991oh my god. If you faint and it is just POTS/ vasovagal syncope you a) come round superfast and b) do not need to be in the recovery position.
I can't believe what people get 'service dogs' for in the US!!
sage for non-contribution/ samesies
No. 413020
>>413014It builds into the idea that 'spoonies' are so misunderstood, we all have to fight so hard for the correct diagnosis, doctors know nothing etc.
Gone are the days of 'oh you keep fainting, drink some more and add salt'. Patient follws doctor's advice, all better. I think some people with POTS genuinely hate that it doesn't require medication etc!
I've seen people argue that the tilt table it 'barbaric' and 'outdated' etc. It isn't 'fun' but nor are blood tests. It honestly isn't that bad!
No. 413027
>>413019Yep, blogging but shock horror I got diagnosed hEDS and I'm not suddenly 'bed bound' or having an awful life, I don't 'feel potsie' etc. I'm biased as I was diagnosed by chance so I never had that frustration of 'what is wrong with me, no one understands'. Literally 'oh you have this heart defect, oh you're bendy, lets chat to the doctor in the nextdoor clinic,' arm span measurement and genetic test. I don't magically have new symptoms!
sage for blogging/ humble brag
No. 413069
File: 1509558883638.png (361.89 KB, 1262x1276, Screenshot 2017-11-01 18.50.26…)
Chloe's Chronicles of Whines is absolutely legendary right now.
- Chloe is getting pay-to-play IVIG. Which she spells IVIGRT. It's not 'replacement therapy' unless you have an immunodeficiency, you munchie fuck.
- She's terminal. And she'll totally die unless she gets £lots.00 by yesterday 4pm.
- ICU nurses and doctors are caring for her… for free. Oh, pull the other one.
- She may need to resort to… watch this… a SYRINGE DRIVER for pain! Because that's totally how it works lol.
- She is still hoping to go to the US to get stem cell treatment but not HSCT… yay stem cell woo.
- She claims that the cutting edge stem cell treatment she wants is not available in the UK. Cleverly, having learned from Brakespear munchies that raising funds for woo clinics will attract some criticism, she has not revealed this wonderfully groundbreaking treatment, the hospital that does it, the lead clinician or indeed any other details.
- She still has CRISPR vaccine syndrome. We so badass, our Gardasil vaccines rewrite your DNA.
And finally, the part that just takes the biscuit:
> We vaccine injured and the entire chronic illness community are treated unfairly compared with someone with a well known disease; such as MS or Cancer. it's neglect and discrimination. I am finally going to get the help I feel everyone deserves and because not many people have the luxury of what I hope to be getting, I want to reassure you all that this fight isn’t my fight, it’s our fight. I will not give up on us. Trust me, I'm going to regain my strength and I'm going to kick up a lot of fuss and I won't surrender until our voices have been heard. Justice will prevail.
For fuck's fucking sake. I can't even be legit mad… this is so hilariously deranged, it's too funny to get mad at. Chloe, you're neglected because you do not have a treatable organic disorder stemming from the vaccines you claim have made you sick. She wouldn't even accept a diagnosis that could lead to treatment if it did not confirm her own theory of why she's sick (we call this 'compensation neurosis').
No. 413077
>>412396
> Do they just straight up ask for something, or is it more subtle? Like "I've been irrigating rectally for some time, but it's so hard to reach back, are there any other options?"Both.
In general, some Munchies will go straight all out and say "I want X". Sometimes, they couch it in words like "my GP/specialist/other specialist/previous doc/pet lizard suggested I raise the possibility of a MACE with you". Other times, they'll gently push by listing all the details of the indication, straight from the NICE guidelines, often enough in the same order.
No. 413094
>>413077Well, if actually another specialist suggested it, that wouldn't be so strange, would it? E.g. the only reason I know what a MACE is, is because my GI suggested it might help with some problems I have with irrigation. So he refered me to a surgeon in a bigger hospital who does a lot of MACE surgeries. The surgeon explained why he said he thought it wouldn't work for me, so that was that.
Although, when I think of it,
I didn't ask the surgeon about it: it was in the referral letter of course. But is that what you mean? That patients are asking for stuff the referring physician doesn't mention anywhere?
No. 413095
File: 1509562056256.png (262.1 KB, 1536x2048, 6250B90B-493C-4CDE-98D3-637C3B…)
Medfags, can you really be in septic shock and have normal inflammatory markers? My personal knowledge is that CRP will rise in infection, especially sepsis.
No. 413102
>>413095Not a medfag, but that last bit with autoantibodies showing up as false-neg/false-pos without knowing which autoantibodies she means specifically) is not unusual especially if you get mono or the flu.
Although still neurotransmitters don't explain why your blood shows no inflammation markers. Inflammatory responses aren't generally modulated by the brain, they're modulated by other organs.
No. 413192
>>413069It is sickening that she is asking for so much money when she has the NHS. The NHS is not perfect but it will care for you, it will keep you alive and it will offer evidence based treatments and in some circumstances fund treatments abroad.
To ask for this much money, especially for her wheelchair (if she requires a wheelchair she would get at least part funding from wheelchair services i.e. she might get funded for electric chair but not reclining and you can pay top up for reclining).
It is absolutely disgusting. Her definitions of the conditions she has on her gofundme aren't even correct!
No. 413209
>>413095This is a crock of shite.
This makes absolutely no medical sense at all, and whoever gave her this 'diagnosis' should lose their licence. That's not how neurotransmitters work, it's not how inflammatory markers work and hyperthermia and fever are the same thing.
No. 413237
File: 1509580252632.jpeg (435.31 KB, 750x725, A04AEB0B-DA7B-41C2-AC14-42B980…)
this person (also known as zebrapotsie) thinks she knows SO much about POTS and dysautonomia and likes to argue about it with people. not sure if she’s the same zebrapotsie as the one on IG, but she’s definitely OTT. just scrolling through either tumblr you can tell. she says “suspected EDS” but has already jumped on the zebra bandwagon (POTS IS NOT A RARE DISEASE YOU LITTLE SHITS, nor is hEDS if you count all the self dx’s and misinformed doctor dx’s ffs)
No. 413445
>>413406None of her conditions are progressive 'I don't need a chair YET'
Repeats all her symptoms multiple times throughout video
Gets a book on low FODMAP even though given she has an ED and GP she'd have a dietician!
Onbviously mentions how she wants a service dog!!!
No. 413480
>>413406Why does she keep making new YouTube channels? She already has 2-3 and they are all the same. She just abandons one for another but changes nothing about the videos and has minimal views/followers (most of whom are just there to comment here). Same with IG - she has at least 3-4 profiles.
Love that she stresses that people with chronic illness can do things, when she sits at home and watches Netflix all day long.
She looks particularly greasy this video. Too bad - she looked better and happier in those old pictures someone posted here.
She is a grown woman trapped in a teenagers mind - between her choice of accessories and love of young adult books (at least she does read).
With her sister leaving town she will probably go back to doing absolutely nothing all day.
And yes - love the I don't need any of those devices - YET. At least she reads the boards here and realizes she can't afford a dog
No. 413533
>>413406I can’t ever make it through a single one of her videos because her voice is so damn grating on my ears.
>>413480My guess is in hopes of it being a better name and people searching will find her and watch her. But alas if you don’t have a decent camera, a better sob story and click bate titles no ones going to watch your YouTube.
No. 413595
>>413533She was mildly more active in this one than previous ones - but I doubt that will last with her sister going back overseas. Hell this one had a 2 second guest appearance by her sister, who seemed uninterested in being on the video - I wonder if her sister knows about the vlog or thinks she was just snapchatting or something. My guess is that she doesn't play up the illnesses as much around the family, because they are over the BS (and also the whole being ill when its convenient for you thing). She did make sure she listed her illnesses and symptoms multiple times (and play the "there are so many I can't keep track" card) but did not seem to go into the typical nausea/dizziness/vomiting monologue (granted I skipped around the video a bit because I can't stand to listen to her babble for too long).
She is entirely too dull to ever get people to consistently watch her story. She is one of my favorite cows for some reason but I typically can't make it through a video. She makes it very hard to like her. The terrible camera angles and lighting don't help (I like how she apologized for quickly putting her hand in the screen but ignored the fact that her leg was in the way the whole time).
No. 413639
>>411084It makes me laugh - they offered me a wheelchair voucher right there and then. I told them I'd rather take the free manual wheelchair that the NHS provide, so they measured me up and within 3 months it was at my door. BUT now that I've gotten the manual chair I am on a 3 year waiting list for a powerchair through social services.
It seems like half these UK spoonies have no idea how wheelchair services work, or EDS for that matter.
No. 413706
File: 1509653707458.jpg (139.38 KB, 720x1280, _20171102_210920.JPG)
Of course it can't be allergies, it has to be something speeshul.
So far the comments talk about a csf leak (of course), deviated septum, mcad, hydrocephalus, empty sella syndrome, pots, food allergies, puppy nose cyst (lmao what)
No. 413857
>>413406Oh Jesus fucking Christ Dani! That "GOOOOOOOD MORNING" intro is so totally not obviously mimicking Mary or Jaquie (bitch please). Ugh her voice! It really is like nails on chalkboard irritating. She squicks me out so hard. She kept fondling that one greasy lock of hair but damn girl wash your fucking hair.
Apparently she edits using GoPro Splice but her videos are such shit quality, if she is using a GoPro, what is up with that?
No. 413871
File: 1509671039805.png (418.58 KB, 640x1136, IMG_9989.PNG)
No. 413872
File: 1509671103496.png (383.77 KB, 640x1136, IMG_9990.PNG)
No. 413873
File: 1509671130080.png (418.07 KB, 640x1136, IMG_9991.PNG)
No. 413875
File: 1509671166059.png (376.55 KB, 640x1136, IMG_9992.PNG)
No. 413876
>>413857I haven't looked recently but usually all of the people she subscribes to on youtube are more well-known chronic illness vloggers. But the combination of her voice, terrible editting/quality, and lack of a life and anyone else in her life makes it unlikely she will ever succeed as a chronic illness vlogger.
I think she is just using the GoPro editing software, not the actual camera. She posted a while ago that she bought a camera to vlog with but that it only worked when plugged into her computer, making it worthless. It looked to be more like an old Flip camera - you know the ones they stopped making a several years ago (her smartphone likely takes better video than that - hell her laptop probably does too). She won't be able to afford a decent camera anytime in the near future (unless she gets a job - like she is fully capable of doing).
Its hard enough to make a vlog successful (think of how many people actually try vs how many actually succeed) and it won't happen when you never leave your bedroom, have no supporting "cast of characters", have a terrible video camera and lighting, have a voice that is unpleasant to listen to, and in general are a greasy adult (that last video was the worst she has been in a while) who is obsessed with tween fashion.
>>413852She only reads trashy young adult novels - the writing in half the books she reads isn't earning her any vocab points - unless she needs to talk about vampires
No. 413877
File: 1509671208175.png (356.8 KB, 640x1136, IMG_9993.PNG)
No. 413881
>>413877She is beyond description disgusting. Comparing herself to Charlie Guard and to CF patients! Girl is mentally ill and deconditioned, and that's it. Everything she and her family posts is a lie and it gets bigger and bigger, more and more grandiose.
I feel so sorry for anyone who has been tricked into giving her money.
No. 413897
File: 1509675025883.png (1.42 MB, 1440x2560, Screenshot_20171102-204734.png)
Toobzzz
She is getting worse.
When her Drs. Say no to her "I'm not begging beg" for a tube she will just give herself a ng tube again and claim they put in an NJ..will be very interesting to watch!
I guess she didn't learn to not be on this app the first time around..i think she is just fishing for attention since her sucessful sister has been home ….and if she had emailed her dr for an appt she would have heard back by now. They don't not reply to the emails specially appointment related changes and if they call her on top of replying they'd leave a made appointment in voice mail and email for her to change if needed. In other words she's not trying to get in sooner. She is lying about it so she can enjoy extra time whining for attention and more time to try to figure out how to make herself sick as possible by het appt.
Her dad just spent a little fortune on liquid meals for her..i hope she's not that bad of a person to toss that away like nothing..
And what is with the insane GP spam?? Holy cow….its like someone who has a mole removed for cosmetic reasons and then posts about skin cancer and how they nearly died and how painful the surgery was every day all day.
Wth?
Dani GP shit is past offensive and ridiculous. She has a reverseable delay, and has other but worse issues going on and doesn't post anything at all about them anymore..i guess there is no fun in that when she actually has the illness
No. 413950
File: 1509682411491.png (542.34 KB, 750x1334, IMG_7618.PNG)
Ugg - screenshot of all the videos on Dani's new channel - all of her in the same unflattering pose touching that piece of hair. I attempted to get through the most recent video - had to scroll past the boring ramblings. She is looking really greasy, like she hasn't showered in a week.
Since she does read this page, it seems like she is making an attempt to film outside of her bedroom - now most videos will probably take place in her cluttered living room. She went on and on about how she can't get enough calories via liquids only so she has gone back to solids which make her so nauseous she can't eat (I doubt she can't get enough calories via liquids - probably because she fills up on junk drinks with no calories). If she can't get enough liquid calories via mouth, I doubt her desired tube would make much of a difference.
She films her mom - which interestingly doesn't seem to have anything to do with her illnesses - my guess is her parents don't care for her over exaggerated medical drama and therefore she doesn't want them to know she is filming a follow about how sick she is.
Also talks about the boyfriend - other than sharing a car she doesn't seem to have much of a relationship with him - they might hang out one night this weekend. For someone she who seems to live in walking distance they rarely spend time together. If she wants to be a mom she should probably work a bit harder at her relationships.
And she is going to the mall to get her nails done (which she previously claimed was a one time extravagance but seems to happen regularly - something about her long nails grosses me out). She begged her dad to buy her special shakes but has no probably getting her nails done. If you are going to do some self care - start with a shower.
No. 413957
>>413877I won't lie - as an NHS doctor, I have initially been somewhat sympathetic towards her plight, not because her claims of having a condition the NHS flat out cannot or would not treat are realistic but because I know there are, sadly, unscrupulous bastards preying on sick people by convincing them that their issue is iatrogenic and therefore the ordinary health system will not help them.
However, let's get this straight: with very few exceptions, if the NHS does not fund it, it is because it lacks evidence of cost effectiveness or safety, or costs more than £30,000/QALY. In the case of Chloe, she claims an injury that makes no biological sense in language that makes no biological sense with a pathophysiology that makes… you get it. If the treatment is outright unavailable in the UK, that would be because it is not safe or not ethical. While I'm not an expert on the matter, I know that the evidence for stem cell treatments is highly speculative in many conditions (unlike HSCT, which has a solid evidence basis for some indications, it is not clear if USCT has an appreciable benefit on ANY condition), and a lot of stem cell treatment is offered under the 'right to try' justification in the US. Because stem cells are not a pharmaceutical but a tissue product, they're not subject to the effectiveness requirement for an FDA approval, and that way woo lieth.
I used to believe that Chloe was duped, because a lot of what she is saying sounds like the kind of nonsense quacks say to pull the wool over their marks' eyes. But I feel that construction is less and less sustainable. Her alarmism of short term irreversible damage is just not realistic. IVIG, which she claims is necessary to render her fit to fly, is not an an approved treatment for MCAS (it quite simply does not work), and it's rather odd she refers to it as IVIG replacement therapy - that language is used almost exclusively for patients with an immune deficiency. Which makes me wonder whether she and her doctor are colluding to have IVIG presacrived and dispensed to her for an unapproved indication by citing a different diagnosis as a pretext.
MCAS will not suddenly irreversibly 'rot your body', her talk about cellular decay and neurotransmitters and all that seems to have absolutely no evidence to support it (show me some radiolabelled neurotransmitter assays or antireceptor antibodies or SOMETHING more than this quackish nonsense!).
As for her paranoid, swivel-eyed claims that she's a high profile case and fundraising would prejudice her situation… oh ffs. It's not like we're scouring the internet for fake vaccine victims and get them black-bagged and shipped to Guantanamo if someone raises money for them, to be permanently deprived of their precious toob feedz. And her description of a 'near death experience' as a medical symptom is just ludicrous. To anyone unfamiliar with what went down: this is a young lady on a stupid amount of drugs who is obsessed with her own health and dramatizes her situation quite a bit. NDEs are not medical phenomena, they're mental phenomena, and I can't believe I have to say this but they're not a reflection of how you're doing. I've had patients have NDEs induced purely from stress, health anxiety and dissociative anaesthetics. It also makes no sense: she first describes the NDE to have happened on a Wednesday after the day she had secretions 'flood her lungs' (on the 13th), but then describes recovering from the secretions 'flooding her lungs' due to the NDE. So which one is it - did she have the NDE when she had the secretions, or on the Wednesday thereafter? Also, given that she's in quite precarious health, how can secretions 'flood her lungs' without her getting aspiration pneumonia?
Chloe has, in my view, long passed the stage of innocent victimhood and moved on to being a vile, predatory, deceptive character. Her and her whole set of enablers - family, etc. - need to face the consequences of their actions. If you want to Munchie your life away, that's your right, but you do not get to deceive people with spurious explanations and panic-mongering of your impending death. I hope someone brings this to the attention of police and her treating physicians, and stops this nonsense.
No. 413992
File: 1509687144379.jpg (289.98 KB, 1000x1000, IMG_9999.JPG)
No. 414049
>>413950Let's just say this boyfriend actually exists. If she's so sick/weak/in pain all the time….. what sort of boyfriend would let her drop the car off for him? Can't he go get it?? It's been bothering me for weeks.
And someone please tell me I'm not the only one who found her voice in the 11/2/17 video particularly painful to listen to.
No. 414080
>>413992The way this works, if she's GIVEN a lump sum that takes her personal savings over £16,000 then she will no longer be eligible for certain disability benefits (not all, though). If someone fundraised for something (eg. the special wheelchair she needs) on her behalf and gifted the WHEELCHAIR to her instead of the cash, she'd be okay to keep it though.
~ disability benefits fag
No. 414101
>>414080Kek, appreciate your clarification, anon, but she doesn't need a wheelchair (let alone the kind she wants - she may have let herself get deconditioned enough that a regular cheap transport chair could be helpful while she regains strength) or disability benefits.
Anyone catch the bit where she says £120,000 would only last them eleven months? She's living in a fantasy.
No. 414125
>>413992This looks like a flight of words. She looks like when my bipolar friends goes manic, which is probably very likely. My first thought was wondering how this bitch has enough energy to resource and type all this shit up, especially if she's mostly paralyzed and bedbound to boot?
But then I remembered mania and now I wonder how long she's eluded the grasp of psych doctors.
Also her bragging about palliative care is bullshit and she's milking that. Anybody who's got a condition that's not going to improve or go into remission will be under some form of palliative care, as it really just means care that reduces the symptoms rather than curing the condition. Before she has said hospice, and treats the two interchangeably, so I'm thinking Chloe is doing a lot of exaggerating in regards to how severe her state is.
No. 414161
File: 1509713438795.png (260.49 KB, 1080x1920, Screenshot_20171103-134828.png)
I give up on this group. I just can't deal with all the bullshit anymore.
No. 414316
>>414187Spot on..thanks for the laugh!
her bs will eventually catch up to her..see the great thing about palliative care is it comes with the full multidisciplinary care that generally come to your home..so this includes a Dr, a RN, Social Worker, therapist and at times additional help.
They don't push people into hospice period….the patient has to ask and the patient actually has to have a Drs referral, and a terminal prognosis and there is no set plan..hospice is based on an idea per person and FAMILY needs. So if she was/is on palliative care she can't continue to fake at this severity for long before they notice it..palliative care and hospice care are amazing but they are in the home a lot, for good reason of course.
Maybe I don't have the full picture here but none of her story makes much sense to me.
No. 414359
File: 1509734004079.png (134.31 KB, 720x1280, Screenshot_20171103-192920.png)
>>414161Someone asked him what specialists he sees for pots. Of course not a normal response but this nonsense.
No. 414404
File: 1509739505915.png (4.22 MB, 1536x2048, image.png)
Ggp on her newest account now is on a big health kick i can only assume it's to lose weight so her GI shows more concern for her in her next appointment so she can get a precious toob kek never gunna happen
No. 414442
File: 1509742832794.jpeg (1.09 MB, 1242x1832, 5B8B30EB-FA88-4F5A-88FD-10CA6C…)
Autumn is gunning for a central line and eventually wants a port, as if home infusions didn’t give her enough “super special spoonie points”. There are so many people that could really benefit from saline infusions but people like this that beg their doctors for PICCs and Ports ruin it for them too.
No. 414448
>>414442So bizarre in the UK we just don't have all these home infusions etc. If you can't get adequate hydration orally you are in hospital until they can sort it out. Obviously SOME people get to the stage of having a port, but it is just incredibly rare aside from cancer patients.
If at all possible then patients who can't have food/fluid orally have it through a PEG.
Ports and cannulas are avoided because of the infection risk, espcially in a non-hospital environment.
No. 414457
>>414404Isn't she one of the ones who claim to have (or want) GP?
If she actually has GP she would gain weight eating that!
(Its a temp weight gain due to fluids and the food sitting in there making extra gas and bloating. When the food starts getting digested you loose some of the water weight. But when you have munchies eating these foods all day every day it just keeps building up)
No. 414461
>>414448Yeah, right. The most I've ever encountered is a couple temporary PICC lines, and a few PEGs and they were in learning disabled children. And they never had these portable feed backpack or kangaroo joey's or whatever that so many of the munchies have.. They'd just have fortisips and water at meal times.
I'd never even heard of home infusions and could never have conceived of going to the hospital just for saline before these threads.
No. 414462
>>414457I think she had a GES and they said it wasn't GP (though at first she misunderstood and announced that it was).
But for any digestion issues, fruit with the skin on is a no no.
No. 414465
>>414442It surprises me that they push for central lines so often!
You would think getting to brag about a nurse coming to your home and placing an IV for salt water would be something they would want..easily more attention that way.
They get a central line and no more special rn coming home to give an IV.
but I guess getting IVs are not fun to have all the time as they are so unpleasant and can hurt..
A midline is ideal for this. I hope they go that direction. Giving this cow a central line is signing her death certificate.
Plus ports are awful! It surprises me also that these cows seem to love ports..you can't see a port unless it is accessed..a central line (power Hickman, broviac, picc) is not.
No. 414472
>>414464And it's shitty because there
is a small percentage of people who would benefit from, but can't get saline in the UK. Of course drowned out among all the Americans whining about how they want this port and that port and home infusions.
eyeroll No. 414519
>>414485I honestly don't think the NHS does badly by those with EDS +/- autonomic dysfunction. I just genuinely think that if you can't drink enough fluid then that needs to be solved (ie. PEG) not by saline drips.
Even if you have really bad vomitting you can self inject (intermuscular) with cyclizine at home. Not need for a port! Prescription, tiny training when you're in hospital because your vomiting got so bad and a sharps bin. Simple!
Soooper ill spoonies will also lead you to believe that everyone with EDS is on strong prescription pain meds and that migraines are never JUST migraines!
No. 414532
>>414529Neither are ideal but my reasoning is someone can either drink in which case they need neither port nor PEG or they can't eat or drink in which case that needs investigating if anti-nausea isn't helping. In which case they need a feeding tube. If they need that long term then PEG or PEG-J (rather than NG/NJ) is the best option, especially for adults.
But essentially my point is- drink more, yes it is boring but the vast majority of people with POTS can do it (contrary to instagram!)
No. 414591
File: 1509751265303.jpg (717.97 KB, 1080x2416, Screenshot_20171103-181943.jpg)
Some one is working her way towards another super special serious spoonie illness..oh my. Brave Dani just can't seem to catch a break!
No. 414653
>>414645Did they give a reason for this?
(I've never considered chasing IV saline as I can drink water fine, only ever had it when I've fainted while already in hospital.)
No. 414689
>>414687It's called freedom of speech, hun
Have you considered that we're "slandering" these people because their behaviour hurt others with (actual) health conditions?
No. 414704
>>414687Sounds like somebody missed their twice-weekly therapy session. And forgot to refill their mood stabilizers.
We don't care what you think. And no, this isn't slander. And no, you can't go to fucking prison for slander.
And no, those other people we post don't have illnesses either. Go make a tearful plea to your insta followers how mean we are.
No. 414715
>>414591Her spelling is so bad I can barely understand what she is trying to explain. Is she trying to say it is weird she sits in a recliner with her head on the armrest - because I don't find that super uncommon if you are by yourself in a big cushioned chair. I don't sit the "normal" way in an armchair and there is 0% chance I have EDS.
She seems to be trying really hard to take the feedback that the vlogs and posts in her bedroom were boring - guess what Dani they are boring in your living room too! She needs to get a hobby or a job
No. 414726
File: 1509760819428.jpg (420.82 KB, 762x573, angie everyone's stalking her …)
An old post of Angie's…disability and stalking are the only two words she knows.
No. 414727
File: 1509761111347.jpg (Spoiler Image,229.99 KB, 1000x1000, IMG_0013.JPG)
No. 414728
File: 1509761127155.jpg (Spoiler Image,208.85 KB, 1000x1000, IMG_0014.JPG)
No. 414729
File: 1509761143500.jpg (Spoiler Image,192.01 KB, 1000x1000, IMG_0015.JPG)
No. 414731
>>414687Are you aware of the definition of slander? Because discussing idiots online is not it.
A large portion of us have these same illnesses these ~super sick~ girls "have." We're not oblivious to the reality of chronic illness.
Sadly, while those discussed on this forum CAN take off their (sick) "shoes", actual chronically ill people can't.
P.S.: EDS and the other popular ones aren't curable, no, but they are treatable and are usually relatively easy to manage. The OTT crowd don't try to have a better quality of life that is totally possible %99 of the time. So, maybe they should try to do the necessary steps to feel better instead of screaming INCURABLE!!!!
No. 414747
>>414729I don't know which is worse, watching her vacuum up NHS resources or blatantly act out ana-chan attention seeking.
Normally I'm no fan of forced psych treatment for dubious illnesses - like the history of weird shit with CFS patients, which probably affected genuinely ill people, not just somatisers. But if ever someone needed to be sectioned, it's her. She is putting her life at risk with factitious behavior and seeking unneeded, dangerous treatments.
No. 414795
>>414747Not sure sectioning a predatory sociopath is the best way to go about things. Beds on psych wards are scarce as they already are.
Chloe and her parents are all together in this sick, depraved game of getting money and attention and resources out of everyone and their dog. It'd be funny if it weren't so messed up.
No. 414835
>>414591I don't comment on here often but DEAR GOD DOES SHE KNOW HOW TO MAKE ANY OTHER FACE?! It's a consistent cross between straining so hard her eyes are about to fall down, and lifting her eyebrows till they meet her hairline. I saw older pictures on here another anon had found and she was actually pretty. Only thing worse than this new face is her god awful voice.
Sage for rant/lack of contribution.
No. 414851
>>414733You’re likely among the minority. Sadly, it appears that many of the farmers use information on private accounts by requesting to follow the person. Sure, maybe people need to not accept random follow requests, but the user was under the assumption they (the farmer) was another chronically ill person to connect with. So, yeah, some of the stuff in here borders slander (making false statements because farmers misreading or adding things that are explicitly stated), and stalking (person puts account on private, proceeds to search for YouTube accounts, other IG accounts, etc after the person has asked them to stop)
General note, freedom of speech only exists when you don’t infringe on others’ rights, which has been pushed in here a few times.
| sorry for appearing to white knight and be a lawfag | No. 414853
File: 1509779467858.jpeg (61.7 KB, 750x230, 9295A218-8CAB-4382-A9A0-804716…)
what the actual fuck, allyson?! I can’t tell if she actually thinks minor symptoms are major problems (hypochondriasis) or if she posts this shit for asspats.
let’s review. bendycripple has had multiple psychotic episodes, a sinus infection, bronchitis, a busted eardrum, probably other stuff I’m forgetting, and now this within a matter of one to two weeks. she claims to have CVID, which yes, increases infection frequency (if she actually has it), but this is ridiculous! If she was getting one thing on top of another (surely she doesn’t get over each in less than two days), you’d think she’d be in hospital.
No. 414858
>>414857Did I say accessing private accounts was slander? No, I said
>>…making false statements…Learn to fucking read.
No. 414898
>>414891if youre really getting upset that people are getting milk to use to mock, not to gain anything by blackmail or harming someone or actually ruining their reputation, then you might be on the wrong site. goes along with the no cowtipping rule, this isnt some autistic anonymous hate army bent on ruining peoples lives. a few stray farmers can certainly take things to far but there are rules in place to keep people safe and farmhands are quick to remove offending material. stop. if you think someone is stalking, report them, bring it to meta.
you must be a spoonie community convert if youre this sensitive to some seriously minor shit.
No. 414961
File: 1509806760260.jpeg (227.87 KB, 750x1178, 2CB06634-32AB-45F5-A604-1F2674…)
Sooper sick, all caused by her own doing
No. 415032
>>415024Bless your heart anon thank you.
Take a shot/hit everytime Dr.Phil rolls his eyes, calls out BS, and/or guests gets stressed out/crys/walks off!
No. 415115
File: 1509819316373.png (543.24 KB, 640x1136, IMG_0016.PNG)
No. 415251
File: 1509830540478.png (3.6 MB, 1242x2208, C6905993-3A2C-4579-A056-480F71…)
Poor Autumn is sad that she doesn’t have gastroparesis
No. 415556
>>415291There's definitely something wrong health wise, and i don't doubt her EDS diagnosis
OTT? might be
No. 415617
File: 1509848187970.jpeg (195.82 KB, 750x960, AC318F9E-D87E-4B11-AF5F-2E169B…)
>>415251Someone in the community is angry with autumn! If that couldn’t be more blatant
No. 415625
File: 1509848971778.png (577.11 KB, 926x634, medicinal pretzels.png)
this overdramatic post coupled with the image made me lose my shit
people just don't know what it's like! having to drink WATER and eat PRETZELS!
No. 415755
>>415626There are very few instances in medicine where every day matters. With acute illnesses, every second can matter. With some fast growing tumours, a week's delay can make a big difference. But there are no chronic conditions where if you don't get treatment within two weeks, you will irreversibly decline. Least of all as the treatment itself is quite speculative. If it works, it'll work whenever. Chloe is a mendacious sociopath, and while I used to think she might be misdirected by her doctor exploiting her anti-vax paranoia, I am now pretty sure this is just a great moneymaking scheme for Chloe and her family. It's fun for the whole family: of course, Chloe herself does not need to get any work done, family can draw carers' allowances, and meanwhile prey on legitimately sick people & get the fat pity bucks. Oh and in the meantime, while criticisimg the NHS up and down, she has no problems getting her medical needs met by them, only paying for evident quackery and unproven treatments (IVIG) for unproven claims like her mysterious vaccine induced EDS.
No. 415943
>>415798yep!
Also again no actual footage (but still uploads really regularly).
No family, no boyfriend.
Voice sounds awful because of purging IMO
No. 415956
>>415952I don't know why she started #gastroparesis -ing but she just had a GES and it was completely normal (her story shows her results). So now she is saying how she 'needs answers' etc.
I don't know enough of her backstory to know what her symptoms are or what has already been tried. Basically I think she reported 'symptoms' (she is slim) and then when she actually got tested obviously it showed nothing.
No. 415988
File: 1509893598836.jpg (161.12 KB, 646x1426, ZITlFRL.jpg)
>>415956This is from two months ago. SHE was very confident. And SHE was pretty sure. Maybe just wait until the doctor tells you what's wrong with you? I don't know, it's just a suggestion.
No. 415993
>>415988I'm scrolling through an account of her (not Instagram, but it looks a bit like it? I don't know - I feel old) and she used to have an eating disorder.
It REALLY seems that GP these days is a magnet for ex-ED patients nowadays. It's probably nice to have a medical reason not to eat what en when everybody else is eating.
GI docs need to be on this. They need to know that with young women coming in with symptoms of GP, eating disorders NEED to be in the back or their mind until they are satisfied that they are an actual medical patient with no overlap or background of an ED.
No. 415997
File: 1509894508816.jpeg (256.62 KB, 750x1191, A81EDB4F-5527-4A56-B67E-D04F8B…)
Her rheumatologists said she’s hypermobile, like many people on this planet. No diagnosis of EDS but hashtags it anyway. This is where it all began.
No. 416001
File: 1509894795761.jpg (334.75 KB, 2420x1024, 6MjcKp3.jpg)
O wow.
No. 416005
File: 1509894926606.jpeg (692.55 KB, 1474x2600, 23C6FFCE-D1CE-401E-801E-0FC072…)
>>415997If you look back she admits everything is normal.
No. 416008
>>415992I see what you mean. Scrolling now, and it's very much of "I am sure that .. is caused by ..". She basically goes on what she "feels" might be wrong.
I do feel bad for her though. She is obviously unwell, mentally. She has some sort of "need" to be physically sick. Of course that's true for everyone with factitious disorder, but some of the OTT spoonies here obviously just want attention and lie a lot for that. With her, I'm not even sure if she
really knows what she is doing.
No. 416013
>>416009I know, what the actual fuck! "Someimes I think about shaving my head just so I'll look sick" really???
Firstly there are very few illnesses that cause baldness mainly chemotherapy for cancer and alopecia so by shaving your head to 'actually look sick' she is basically saying she wants to look like she has one of those two illnesses (basically cancer).
Urgh. Also all her testing came back fine and yet she has a 'pots doctor'??? She means autonomics or cardiology not a 'pots doctor' why would you see a 'pots doctor' if you don't have pots because ALL YOUR AUTONOMIC TESTING IS FINE!
No. 416016
File: 1509895367050.jpg (184.38 KB, 658x1430, XQdPuZk.jpg)
>>Doctor says I don't have HEDS
>>I'm taking it as a diagnosis of HEDS
What's wrong with this picture?
Also: she says her rheumatologist "also thinks" she has HEDS. No, they said she was hypermobile and it could be HEDS but they didn't know much about it.
No. 416018
>>416001This one irks me. The other stuff she posts are kinda hilarious, but this one just reaffirms she's a malingering dipshit. Like, trust me, if you are sick, like if you have a condition that makes it hard for your body to absorb nutrition, or retain adequate water, things like that, it is visible to other people. People can tell a sick person from a healthy person, even people who've never met you before.
Before people start harping on how I'm wrong bc XYZ of their own experience, the statement above is based on my own experience. I had a serious flare of what I now know was a disease state, and it was obvious even to strangers even when there was no behavioral signals. With these cows so many of them are always insisting they almost passed out and you know they did the whole swooning thing, or have a wheelchair or a cane, or some weird shitty munchie prop.
If you really are sick, aren't medicated or treated for the sickness you insist you have, it would be obvious to other people. It's an innate human ability to detect sickness in others.
No. 416027
File: 1509896493447.jpg (353.37 KB, 2408x1142, EUVKGym.jpg)
>>416020Well, she says somewhere that she was diagnosed with chronic lyme. The problem is that a) that's not a real thing and b) how can be believe she is "diagnosed" with anything if she literally tells us that a doctor said she didn't have something, and then she "takes that as a diagnosis of" that same thing?
Also, see picture: she's kinda obsessed with cancer.
No. 416029
File: 1509896569988.png (852.76 KB, 920x560, remyretard.png)
oh man. y'all need to check out Remy Riot/Karina Hagelin/Sadie Turner/Remy Hagelin/this bitch has had about seven names:
https://www.instagram.com/femmesupremacy/she's kind of a big figure in the zine circles, specifically zines catered toward "femmes," the made-up concept of "radical vulnerability," endorsing self-care by begging for money from other people and then using it on Sugarpill makeup and Modcloth dresses, and then calling the people who don't dig that shit ableist, transphobic (because technically she's genderqueer), femmephobic, fatphobic, the list goes on
her insta is private unfortunately but I can post a lot of screenshots if people are more interested in her BS, also she accepts mostly everyone who requests her.
some of her greatest hits include:
>>pretending to have lupus when really the problem is just that she's obese>>speaking of the obesity, everything she posts is tagged with #fatfemme or some variant thereof even if the picture is not even relevant to being fat or femme>>she used to be much much thinner but apparently this was during a period of heroin addiction where she used opiates and alcohol to self-medicate her PTSD (yes, she has that too, of course) after being raped>>posted photos of bruises after a BDSM session with a guy and bragged about how easily she bruises, then repackaged the same photos later and tried to sell a "this is what a male feminist did when he raped me" narrative>>see: http://silverstorm1000.tumblr.com/post/138209981510/femmefilth666-this-is-what-a-male-feminist>>her tumblr, femmefilth666, was a gold mine but now what's left is just the posts people have reblogged. I don't believe she's remade>>the reason for this is probably that a huge portion of her fanbase in the zine community has realized she's full of shit and are calling her out everywhere for it>>triggered constantly and sometimes posts pictures of herself crying in public with the hashtag…. #cryinginpublic. apparently this is a revolutionary movement and she goes out of her way to do it>>has a long history of asking for rent/food/utilities money from people and then using it to buy expensive shit>>unsurprisingly spoiled-ass brat with rich parents who still support her financially at 27>>grad student in library sciences who literally wears a $300 leather tit harness as part of her daily outfits>>regularly posts pictures of when she was skinny as a reminder that she used to be hotter but packages it as "I was miserable when I looked like this I was strung out on heroin">>considers every guy who fucked her while she used opiates (I word it this way because I don't believe she was ever addicted to anything) a rapist>>tells you that if you don't call her hot it's because you're fatphobic>>got into a relationship with another person in her zine circle who then invited her to visit them in Berlin for a month, the girlfriend ended up broke because Remy made her pay for the entire trip expenses and threatened to call her abusive to her huge fanbase if she didn't>>aside from the lupus she apparently has some other chronic illnesses like fibromyalgia or ehlers-danlos because she's bitching about "pain" all the time >>calls herself a lesbian despite adamantly identifying as genderqueer and wanting to use they/them pronouns I really could keep going but I don't know how much more anyone wants to hear lol.
tl;dr Tumblr was femmefilth666 but deactivated although a lot of posts are still archived, Instagram is femmesupremacy and is private but she accepts everyone (including me, we don't know each other but we've gone to the same uni for years and my friend circle has just watched this trainwreck in awe for a while)
I'll post more screenshots of her messy-ass instagram if people are interested so I don't flood the thread but I'll post some of her greatest hits
No. 416037
>>416036If she is such a feminist advocate etc. then why is she perpetuating the idea that all rapes are violent and leave obvious physical injury?
If she had such severe and obvious bruising then why didn't she go to the police? It would be one of the few instances where assault (sexual or otherwise) would be open and shut case.
No. 416039
File: 1509897215320.png (447.23 KB, 510x593, remy1.png)
>>416029what this girl literally wears to work in a library
No. 416040
File: 1509897266206.png (689.36 KB, 922x598, remy3.png)
>>416029letting you know that if you don't call her attractive in this bodysuit you hate fat people
No. 416042
File: 1509897303702.png (710.8 KB, 934x599, remy4.png)
>>416029an example of the public crying posts (there is at least one a week)
No. 416043
File: 1509897358483.png (788.44 KB, 935x597, remy5.png)
>>416029one of the many "look how hot I used to be" posts disguised as "I was so sick and messed up when this was taken" ft. Every Man Who Fucked Me Back Then Is Trash
No. 416053
>>416036thanks for finding that lol I couldn't track it down for some reason. but that's pretty much the shit hitting the fan. there are even more stories in the multiple shares of the post (mind, a lot of these people are wack as fuck too with their "spoon" shit and their weird radical-healing lingo like "witnessed" which makes me just think of Mad Max, but seeing her finally get mass-dragged was refreshing). after this whole conversation she threatened suicide to many of the former friends of hers posting in this thread and proceeded to demand on insta that, as a person with BPD, she demands YOU to go out of your way to treat her nicely so she doesn't commit suicide. because that's how that works.
I think this is when the tumblr was deactivated and the insta became private.
No. 416054
>>416001Sounds like another person with a mental illness that is desperately reaching for a physical illness to gain more pity points.
I understand the sentiment to some degree - severe depression and other mental illnesses can make you feel like crap and make it really hard to get out of bed and do things. However, most people don't understand mental illnesses - particularly to that degree so there is more of a thought of "just don't be sad" when it is a lot more complicated than that. People are much more understanding of a physical illness (nobody is making memes telling people they wouldn't have cancer if they went outside for a run but there are plenty of memes that suggest that depression wouldn't exist if you just went outside).
That being said - these munchies (like this autumn chick, dani, and many more) are doing themselves no favors by spending all their time and energy trying to get a diagnosis for a physical illness. Many mental illnesses are manageable/treatable and since they have access to all these fancy specialists they probably also have access to a therapist and some decent meds if needed.
Lots of people are productive human beings with mental illness and/or physical illnesses - no need to try to create a whole persona around being a sick so you can get all the pity points.
No. 416061
File: 1509898345941.png (108.14 KB, 488x241, Screen Shot 2017-11-05 at 11.1…)
also I just noticed this in the tumblr post I linked. David Bowie raped statues y'all
No. 416070
File: 1509898868013.jpg (113.01 KB, 510x593, IMG_8687.JPG)
>>416039Jesus who the fuck wears this to work? It's always a shame when fat chicks don't dress flattering to their body type and wear clothes that are 10 times to small to be ~sexy n sassy~ ~bodyposi!!~ when they just look like a bloated whale suffocating on fabric. That belt lol. Also if she's so fuckin anti-fatphobic or fat acceptance or w/e then why did she shoop her body? Like was it really THAT necessary that she needed to put a thigh gap in her pic? Does she think that's inspiring or believable? Pic related
>>416043of course it's someone else's fault and not her fault for being a heroin addict. Boohoo. I wonder how many people she took advantage of when she was an addict? Bet all the dudes she fucked for dope are now "they RAPED me when I was in a VUNERABLE STATE!!11 uwu" and all the dudes she took advantage/manipulated for free dope without having to fuck are kind gentlemen who helped her in her time of need.
No. 416072
>>415798Its like she knows that her main vlog audience is people coming from this site. She directly addresses every question mentioned here or tries to explain it away.
- Claims she didn't film in the grocery store because she had to push the cart to brace herself during "dizzy spells" but has not problem filming herself while walking in the parking lot. She is making more attempts to have other people in the vlog but it totally unsuccessful at it (her aunt clearly had no desire to be a part of it). Her guest appearances are really just brief "say hi to the camera" with no real content. I suspect that she can't play up the illnesses around her family/boyfriend. She can claim she needed to brace herself on the shopping cart and couldn't film but likely just didn't want to film herself doing normal shopping where she can't actually talk about all her "symptoms" because her mom/aunt would probably tell her to knock it off (or ask her why she is trying to film her distress). I don't think she plays up the illnesses as much around family as they are likely tired of it.
I don't doubt the existence of the "boyfriend" but I doubt it is a healthy relationship. If you have been going out for 14 years and live within walking distance of each other (also can't walk around the grocery store without support but can drop off a car and walk home with no problems?) then you should probably spend more than maybe an evening together once a week. She gets very defensive about this relationship (there is no need to explain why you aren't getting dressed up - especially if you aren't going to show any part of your interaction with him). I doubt it is a healthy relationship, but I hope for her sake she isn't stuck in some sort of abusive relationship where he is just using her.
- And if we are to believe the results of her shopping trips then there is no reason why she can't stick to a liquid diet for a while. Of course her newest thing is that she can't get enough calories via a liquid diet.
Also - just terrible resource spending. Not sure she will like whatever shakes her father bought her or if they will work - but buys two large cases. Ginger tea was recommended so she bought 4 different kinds at once instead of one at a time. If you are really so scarce on money for food - you would buy one, see if it work, and then maybe try another.
And since her lack of a hobby has been discussed her multiple times she really is trying to stress that she reads in another room.
No. 416077
File: 1509899266511.png (496.63 KB, 479x600, remy2.png)
>>416070I actually think she shoops to make herself look fatter if anything, or at least poses in ways that make her look fatter. I see her sometimes in person and she's fat but not quite as huge as I think she wants people to believe she is.
No. 416080
>>416070I think that bottom one is just rolls around the tops of her legs/ vagina?!
Basically she just can't dress appropriately. Fine wear hot pants if you want to for a night out, don't wear it to work!
No. 416089
>>416075>>416079I thought too at a far away glance, and then I noticed the blurring around the thighs and zoomed in on the pixels in between. She pulled apart/ further extended the space between them. You can blatantly see it in the pixels (color, highlight/shadow, and blurring effect on pixels that occurs in apps like facetune) and the specific area blurring around her…. croch region but not on the other shorts region. I work part-time for a graphic design company, and even if the photo was shaken or naturally blurry it wouldn't occur like that. It was actually the first & most obvious sh00p to spot, so I'm surprised. And a look at her other pics she shoops her arm fat smaller frequently. Idgaf if she sh00ps herself into amatue space barbie, it's just a bit hypocritical to be all bodyposi, fat acceptance, anti-fatphobia, preaching against it. While shooping your fat to be smaller. Like hypocritical. That's all, not a reach, it's a bit relevant based on her niche and activism.
>>416077I'd believe that too just to hop on the fat femme fad. You've seen her IRL? Does she just look less plump? Or…? Jw
No. 416110
File: 1509902456016.png (3.6 MB, 2000x2300, Untitled (5).png)
Can we talk about how autumn "made an eds awareness card" with a text she copied from stickmancommonications
No. 416117
File: 1509902754728.png (120.36 KB, 745x1189, IMG_8697.PNG)
>>416029>>416077Plz don't tell me she lives in DC. Plz. Plus if you google her name all these callout posts and all her fundraisers show up and there's a whole lot of them kek
No. 416148
File: 1509990514210.png (155.88 KB, 749x1028, IMG_7653.PNG)
Dani is now trying to get people to buy her clothes via an app and sayings it's so that her and her boyfriend can get their first place together.
Interesting that she barely seems to spend any real time with him but her relationship with him is questioned on here and all the sudden they want to move in together. I think it's more trying to validate a relationship for her online critics rather than deal with the fact that she is likely in an unhealthy relationship.
I would imagine she doesn't have enough clothes to sell to make a dent in a security deposit. Additionally she already has a place of her own (and I would assume the bf does to). It sounds like her place is government subsidized and she made it seem like hers was larger than most so why give that up?
I doubt they are really considering moving in together and she can use money as the reason why it is taking so long - just like she uses it to claim why she can't start/stick to a recommended diet
She does get points for only mentioning mental illness in that post - that really is her biggest issue and if she did some real work in that area then she might find other areas improve as well.
Dani, since we know you read this - please for your own sake get away from social media for a while. You spend so much time justifying yourself to strangers and digging yourself into a deeper hole. You have potential and since you don't seem to get a lot of support from social media it is only hurting you. Work on getting a life beyond being a "chronic illness warrior" - you will find the real world much more satisfying
No. 416294
>>416110I'm sorry, but do these people realize why others ask them what happened?
Nobody, and I mean nobody, gives a fuck about the minutiae of your illness. Asking people 'hey, what happened to you?' is a way to open a conversation during which some degree of social empathy is shown. What people care about is building a connection, not learning all about your fascinating medical conditions. If someone handed me a card that explains their super special illness, I'd run for the hills. The excuse of not wanting to explain does not sit too well with me, either - you can simply say 'I have a chronic illness that affects my joints' or 'I'm sorry, I don't feel like talking about it'.
As a doctor, patients often ask me about some of the more evident signs of my past illness. I think it's a great way to allow them to learn something about me rather than making the whole thing an inquisition, and allows them to relate and vice versa. In reality, I haven't often encountered this happening - most people are sufficiently scared of uppity/annoying spoonies throwing a fit if you dare ask them about their braces/wheelchair/etc. If this happens often enough to you to have to hand out cards, you must be living in a different alternate universe.
This is really similar to people getting pissed about being told they don't look sick. Most actually unwell people go great lengths to not look sick, and being told I don't look sick is like praise on a job well done. On the other hand, it's Munchies like Autumn who want to look as sick as possible, even considering shaving their head, lest they feel their precious illness is 'invalidated'. It is entirely, wholly unacceptable to be an asshole when most people do mean well - as opposed to people who say 'you look ok, you must not be as sick as you pretend', which btw if you actually know you're sick, as opposed to pretending and worried about getting rumbled, would not normally bother you all that much unless it's said by your doctor or your boss. So what if some random dude thinks you don't look sick? The world doesn't owe us a duty to permanently validate us, and least of all does it owe us a duty to on one hand not treat us as useless cripples, while at the same time not treat us like everyone else…
No. 416316
>>416110BUT YOU DON'T HAVE EDS AUTUMN!
Also makes me annoyed that stickman have this card. Whilst there is believed to be a genetic link between hypermobility and autism the number of people who actually need a communication card about EDS (i.e. who have EDS and need communication cards) is pretty small! Usually people with communication needs and physical illnesses have hospital 'passports' and/or medical alert bracelet with next of kin/ carer info!
No. 416381
>>416089I have seen her a few times in the last few months, she and I are in totally different graduate programs on a pretty big campus so we only cross paths in the same places (student union food spots, bus stops etc). but yeah, she is obese in person, but I think in some pictures she accentuates the obesity. for instance, the picture with her holding the cat. that's not a good angle for anyone – I'm very thin and untoned and would also look pretty gross from that angle IMO because I have literally zero tricep definition. but I think she, idk, intentionally poses to make herself look fatter in the same way that thinspo chicks pose to look thinner? or at least she thinks it's somehow possible to be obese and have an hourglass figure with dainty wrists etc hence the photoshopping? I genuinely think she's delusional enough to believe this kind of body type is possible. because in person she's fat but she doesn't have an hourglass figure. she's just… fat. but also not morbidly obese, like some of her photos make her look (like the underwear pic I posted earlier). idk, it's very strange to me. I think it speaks a lot to how insane she is.
>>416117yes, she does live in the DC area. she churns out those GoFundMe and YouCaring pages like it's in and of itself a job. all of them involve her escaping "toxic living situations" because people I know who have lived with her at different times all report the same trajectory: everyone gets along at first, Remy's myriad illnesses and
triggers are made known to everyone, Remy does standard bad-roommate shit like not pulling her weight on the housework or actively engaging in stupid self-destructive behaviors in the house, roommates confront her about it, she freaks out and threatens suicide, calls everyone living with her an abuser, then needs to move somewhere else. the reason she needs the money is because she breaks fuckin leases every other month lol. she also is a compulsive cat collector – I know three people who have cats she has adopted then couldn't take care of and/or take with her when she moves to a new place. either that or she just sends them to live with her rich parents. then turns around and calls herself a "cat lady." girl…
No. 416414
File: 1510005383130.png (558.33 KB, 1280x720, lolcow.png)
>>416381She seems to use a lot of different names online.
Have people seen this? She says she is 100% healthy
https://imgur.com/a/eWIrm No. 416441
File: 1510006811982.jpeg (196.74 KB, 750x1202, 0116052B-BE3A-4DDE-9B8E-914042…)
>>416316This one was my favorite yet. She’s disabled from everything she’s never been diagnosed with
No. 416479
File: 1510008155653.jpg (111.51 KB, 868x1000, living_with_krasinski.jpg)
>>416441Does she know she's John Krasinski?
No. 416487
File: 1510008536328.jpeg (104.12 KB, 750x444, 78174AD6-F9BA-49E7-9900-14C1A9…)
Why on fucking earth would you make this public to anyone but your doctor (or maybe SO)?
No. 416506
File: 1510010727084.png (39.17 KB, 408x151, Screen Shot 2017-11-06 at 23.2…)
Seen in a disability group on FB…..
Didn't HypermobileGuy's dad buy his wheelchair for him? He's like, 23 and has never worked in his life. How would he be able to save up for an £8,000+ wheelchair with all the bells and whistles?
No. 416519
>>416506It would take awhile but if he gets all the income his supposed conditions would entitle him to he would get
£83.10/ week for care
£58/ week for mobility
£173/ week for living costs (unable to work)
and his rent/ most of his rent paid
So depending how and where he lives and how much he actually spends on care and mobility then he could easily save up over £400/month if he doesn't actually need that much care etc.
No. 416530
File: 1510013327130.jpeg (181.42 KB, 750x1036, E697B73E-83C7-401B-BD79-47B32D…)
>>416472Glad someone finally DID call autumn out on her munchie behavior, more people need to though! She needs mental help, not physical.
No. 416589
>>414728WTF is a "toxicity burn" or "toxicity blister"? It just looks like normal skin that's had a dressed pulled off recently.
Also top keks at the "Chloe has to wear carbon filter masks 24/7" right above a picture where she's not wearing one…
No. 416653
>>416016Sweet jesus no. I agree the geneticist (if she was exactly as described) could have been more helpful, but she should have explained that being hypermobile isn't the same as having a hypermobility DISORDER. It's like finding out you're anaemic and straight away jumping to I HAVE CANCER. Just, no.
I'm dreading the day Autumn discovers (and is validated by) The EDS Society.
No. 416663
File: 1510023393796.jpeg (835.83 KB, 2078x2078, D45AACEB-2016-415F-92AC-614B0A…)
>>416653Uh oh someone’s spilling the beans
No. 416751
>>416747I think the Stickman Card for EDS is especially useful for someone who doesn't use mobility aids all the time, but does need to sit down a lot, or has trouble with balance. It isn't exactly a doctor's letter, but it spells it out in an accessible way.
(Personally my fave is the one aimed at wheelchair users that reads "Warning: leaning may
trigger biting reflex")
saged for going a bit off topic
No. 416878
File: 1510037629070.jpeg (259 KB, 750x1154, 4FC0E504-C045-444E-975C-6795FA…)
Finally got what she wanted
No. 416894
File: 1510041790373.jpeg (186.61 KB, 750x821, D49CB79B-2110-49B6-B96B-D6CA7D…)
>>416653Autumn had no problem climbing mountains and hiking last year but all of a sudden got EDS, and cannot stand for several hours for a job? I’m confused
No. 416926
>>416653what an awful thought…
She's milking that hypermobility "diagnosis", hosting EDS group meetings. I suspect it's a way of figuring out what symptoms to develop next, and also the sweet sweet validation ofc
No. 416974
File: 1510056615406.jpeg (276.87 KB, 750x1086, 9D981654-3C99-4737-AB4F-EF535E…)
>>416973Just think. She still has MORE undiagnosed illnesses, on top of the ones she’s already pretending to have.
No. 416977
File: 1510057187728.png (474.52 KB, 934x609, wtfcassie.png)
One of Autumn's followers, who nags at Autumn for munchie advice.
I'm gonna go ahead and say that her "diagnosis" of EDS is probably bullshit. I don't imagine that a doctor would complete a page from the EDS society to give her documentation she has EDS.
Also has the golden trifecta of EDS/gastro/POTS, and her latest post is about coming off of benzos.
No. 416978
File: 1510057851040.png (184.7 KB, 937x596, wtfcassie2.png)
>>416977And she was in a "gastro" flare a few months earlier that landed her in the hospital? I'm sorry, but that makes no sense. She's showing all the signs of that classic attention seeking behavior.
No. 416982
>>416977In actual EDS cases, benzos aren’t that surprising because of anxiety caused by whacked up adrenaline responses, but who knows.
As for the handout, the doc sounds like a quack if they gave that handout. Usually the hospitals have their own info sheets or print out stuff from the NIH or NORD, not a patient/researcher combination society.
The whole things seems weird because in EDS, when you have genetic testing, you don’t tend to have “matches”, you tend to have “deletions”. Most EDS is caused by full deletions of certain collagen genes, or very mutated ones. If this girl actually had a gene from vEDS or cEDS that showed any significant mutation on those genes, she would have that type, not fucking hEDS. Conclusion? She doesn’t know shit and either her doctor is an idiot or she has just lied to everyone.
As for the EDS/POTS/Gp thing, my doctor thinks it’s such a load of crap. There is genetic link between EDS/POTS/MCAS, but when they were testing for bowel disorders, he said that Gp is rare as a whole, even in other conditions (besides diabetes); ie it’s not actually a common thing in EDS as these munchies would make everyone believe…
No. 416984
File: 1510058582360.jpg (8.07 MB, 4032x3024, image.jpg)
>>416977You can literally print this paper out yourself off of the website. Takes 5 seconds.
No. 416986
You guys should check this one out
https://www.instagram.com/alexhaagaard/
>claims to have pots, eds, mcas, chiari and a mystery bleeding disorder>talks about having an appointment at a EDS clinic but never said anything about it afterwards>calls themself medical mystery>posts brain scans with clear evidence of NO chiari, still thinks doctors are wrong>suddenly needs a wheelchair and a mask>admits history of self harm but still claims to just bleed from weird places out of nowhere>self proclaimed fat but doesn't do an effort to change that > admits to not having diagnosis Also have some crazy pictures of a pulse ox showing her heart rate raising over 100 bpm. However it also shows her oxygen levels as very low, so i doubt it's working
Sorry for no screenshots, i can't get it to work for some reason
No. 416989
File: 1510058896556.png (706.18 KB, 932x600, wtfcassie3.png)
>>416978Cassie has apparently already gone down the wheelchair route when she was in high school. ??? She also has her cane with her. Tags in this post are: {TAGS} #ehlersdanlos #ehlersdanlossyndrome #ehlersdanlostype3 #gastroparesis #spoonie #mitralvalveprolapse #fibromyalgia #crps #amps #chronicillness #chronicpain #spoonielife
Wow she's just throwing the kitchen sink in there.
No. 417000
File: 1510059975500.png (584 KB, 934x603, wtfcassie4.png)
>>416989
>I still technically have Fibro, but it's because of the EDS. wat?
Also haha sounds like doctors had wised up to her bullshit pretty quick when she was in highschool.
>After years of misdiagnosis and being told it's all in my head, Im so glad to know what it is.Yeah no. No doctor would tell you that a condition that causes pain and weakness also causes a condition that indicates unknown sources of pain and weakness.
No. 417002
>>416982I wholly agree, and just to add: either one of two things are happening.
1. the munchies take gastric delaying drugs in order to slow their digestion on purpose to get a diagnosis or
2. they have eating disorders which also can cause delayed gastric emptying.
I dont know why these brats think a tube is such a coveted thing, no way would I want something like that coming out of my skin. it can get infected easily and all that.
No. 417006
>>417001>>417000Well, EDS and fibro is actually often seen together. In general fibro is often seen in chronic pain conditions
I don't think EDS causes fibro however
No. 417010
File: 1510061250705.png (549.31 KB, 934x606, wtfmadi.png)
Another cow who didn't get what she wanted. Instead of gasp a diagnosis and IVIG she got a responsible doctor who referred her and some antivirals haha.
Hint: it's later discovered all her problems are due to infected tonsils, which she presents in the most hilariously overblown way possible.
No. 417020
File: 1510061798504.png (640.22 KB, 935x597, wtfmadi2.png)
>>417010Along with having the standard fare teenage disease, like bad tonsils and mono, she also suffers from a near terminal case of the stupids. Who on earth puts their full name out on instagram?
No. 417027
>>417002>>416982I totally agree! The hospital that tastes my gastroparesis and bowel problems only sees about 5 EDS patients per year. They do however see tons of diabetes patients, ED patients and patients on heaps of opioids.
Finding someone with both EDS and GP that doesn't take opioids or has an ED past is (Un)surprisingly difficult.
No. 417036
>>416977You can just print that off the internet and fill it in yourself!
https://www.ehlers-danlos.com/heds-diagnostic-checklist/And whilst your geneticist might refer to the checklist you'd still get an actual written letter to you and your GP/PCP saying this is the diagnosis and this is the plan. That actually peice of paper is not a diagnosis!!!
No. 417042
>>417006The problem here is that from fibromyalgia is a dx of exclusion; aka they cannot figure out what the cause of your symptoms is, and have (supposedly) ruled out any other pathological cause. Once you recieve a dx of say, hEDS (or RA, lupus, etc) the fibro dx no longer applies.
Source : straight from my geneticist's mouth
No. 417046
>>417042Yes yes yes! The same is true with chronic fatigue syndrome/ME once you know your chronic fatigue is from a biological cause i.e. weird joints/ heart/ bladder impacting your sleep then you don't have CFS anymore.
CFS and fibromyalgia are the 'we don't know why' diagnoses, once they know why you don't have them anymore!
But hey, that'd mean you have to edit your insta bio and hastags and look less sick…
No. 417059
>>417046Fibromyalgia is such a pain in the arse. It's ill-defined, it has no aetiology… My GP thinks Pfizer invented it to flog Lyrica. I've met other doctors who think they know exactly what it is and how it works. No one agrees. I've encountered the idea often that fibro is what happens when your brain's sensitivity is increased, therefore "secondary" fibromyalgia is a thing. You have a condition that causes pain - EDS, whatever - so your brain is always "on" to pain and that is(?) or leads to(?) fibromyalgia. But isn't that AMPS? Or chronic pain syndrome? And fibro is meant to have specific diagnostic criteria - the tender points are meant to stop it being a wastebasket dx. But then a lot of medical professionals don't bother with the tender points. It's used interchangeably with CFS.
It's a fucken shitshow so I can't blame anyone for not knowing what the eff is going on. There is no correct view because they're making it up as they go along.
THAT SAID, people clinging to CFS/fibro dx after being dx with a quantifiable thing are doing so purely because they gotta catch em all.
No. 417153
>>417010Err… bone marrow failure? And she'd have that why exactly?
One, bone marrow failure is automatically excluded unless she has multilineage cytopaenia. Two, not only is BMF rare, it also occurs only in a small number of defined circumstances: exposure to certain chemicals (e.g. previous chemo), some rare genetic defects that show the multilineage cytopaenia in the first decade of life and sometimes, rarely, myeloid cancers. Three, I've never heard of a myeloid cancer presenting only with some vague immune dysfunction. Four, I get it, she wants to have an oncologist because that's so cool among spoonies (it's like hitting the major league!), but bone marrow failure is either minimal and trivial and needs no treatment other than monitoring and occasional transfusions, or it is way too severe for her to have it. In the vast majority of cases, the onset of BMF is very slow. I have some personal experience with it (aftereffects of chemo) - my counts started declining four years after my last treatment and it wasn't for another three years that I needed a transfusion, and I'm managed with monitoring and tranexamate. So BMF is either very slow-moving and indolent, as it is in most cases (I have several patients who are in various stages of BMF and MDS, and many we don't even bother treating because they're more likely to die with the disease than of it!), or - in the rare case associated with a myeloid malignancy - fulminant, fast-moving and pretty much unmistakable. But yeah, why don't you waste the time of a paediatric oncologist, it's not like they have actual sick kids with cancer to deal with.
(Personal note: I was very young when I had cancer, and it was like the whole world crashed on top of me. The fact that my oncologist took the time to talk to me and keep me emotionally going has saved my life. The worst that can happen when Munchies steal a gastro's time is longer wait times. The worst thing that can happen when Munchies steal oncology capabilities is worse care, less attention, greater risk of missed issues, worse psychological care and ultimately a far worse outcome for the patient. Just so Miss Munchie can have her coveted oncology appointment, someone who may just have been diagnosed with a potentially terminal cancer will have their appointment cut short. Asshole.)
TL, DR: stop whining, you don't have cancer, and you definitely don't have bone marrow failure.
No. 417171
>>416984"Do you consider yourself double jointed?"
Oh EDS Society, you epitome of clinical incompetence.
No. 417183
>>416986She's suspicious. It's like she has found a niche area she loves ranting about (disability issues), but of course, you can't credibly do that unless you have a disability of your own. So she set out forthwith to get herself one.
Also, no matter what the self-anointed spoonie medical experts are saying, she does not have low-lying cerebellar tonsils and definitely does not look like she has Chiari. Her principal problem seems to be an acute awareness of her own mediocrity and a bitterness arising from this, which she expresses by a sort of 'angry cripple' attitude - she's angry at the world because she never got the career and accomplishments she wanted, so instead of satisfying herself with what she is and what she's got (among others, a healthy albeit deconditioned body), she has twisted herself to this image of the misanthropic spoonie warrior, of whom we accept a degree of gruffness since they're after all in pain, or so they claim. This is an incredibly bad precedent to teach/show to other disabled people, because in life, this kind of bitterness doesn't get you anywhere. But hey… who am I to dictate to someone who unironically wears a pin that says 'dismantle privilege' how to live their lives?
No. 417246
File: 1510076194629.png (622.61 KB, 1536x2048, 716B2BE9-FDAA-4BB7-9F74-347862…)
>>417183Holy shit we got us a munchie here. Perfectly normal vital signs, normal brain scan (very much not chiari because that’s super obvious, her brain looks perfect, physically at least kek), and a gofuckme even though she lives in Canada, land of free health care
No. 417294
File: 1510078694436.jpeg (16.38 KB, 259x320, A902ACCC-45D0-4644-BE64-AC5784…)
>>417247Here’s what chiari looks like, if anyone’s interested
No. 417376
File: 1510081769601.png (639.37 KB, 652x738, 24243423432.png)
>>417309How is this extreme special hypermobility? Everyone can do this, we used to do this in school all the time and everyone in my class could do it. I love how hard they try to be special.
No. 417393
>>416979Agreed - If there is any truth to it, then its that after not being given the diagnosis she wanted, she went doctor shopping and found a doctor that knows nothing about EDS and convinced that doctor that the diagnosis fit. I wouldn't be surprised if sometimes these doctors agree to a diagnosis because they just can't make sense of the nonsense that the munchies present (I would imagine its hard to diagnose based on imaginary symptoms).
Even if the doctor did - I doubt they would print out the checklist from a website and provide that as documentation.
Generally, the fact that the EDS Society has made a "diagnostic checklist for doctors across all disciplines to be able to diagnose EDS" is suspicious. Its not a diagnosis that should be given out by a random doctor. Are you going to print it out and bring it to your urologist expecting him to diagnose you with EDS? They seem to be trying to convince everyone they have EDS while at the same time doing things that I would only expect of an organization for a condition that is so rare that there are only a handful of doctors who have ever seen/heard of it.
No. 417431
File: 1510084422628.png (550.29 KB, 933x602, wtfmadi3.png)
>>417020
>wishes she had smallpox or measles to get more copious asspats>has gallbladder removedI really think we ought to take people like this and parachute them into a region on earth where measles is still endemic. Maybe some polio or croup.
What the fuck is it with these assholes and wishing they were so visibly ill? Trust me, even when you're visibly ill, more likely people are going to be looking at you with wariness and trepidation. They don't want what you have if it looks like you're contagious.
But these munchies think that any attention is good attention.
No. 417439
>>417382Everyone is obsessed with having vEDS/ cEDS because it is more severe than hEDS. Loads of people are like 'my skin is stretchy I can't just have hEDS' even though that is a diagnostic factor of hEDS…
She has enough money on her gofuckme to get the genetic testing, but I'm sure as soon as that comes back negative she'll just be like 'waahhh I need the scan for Chiari'
No. 417502
File: 1510087204571.png (160.06 KB, 1008x555, the evil is defeated.png)
Someone tipped the lolcow pots group lmao. "THE EVIL IS DEFEATED"!
No. 417529
>>417521Found the post with one of them
This one:
>>415625 No. 417551
>>417502>The devil is defeated>Your in an Army full of Soldiers, so what one do thats on them>God don't like uglyThese delusions are so sad and unnerving. Imagine being so caught up in your own little world that you seriously believe there's a war being waged between devils and armies of sick angels. Later, an omnipotent sky fairy will conveniently overlook your wrongs for the 'greater justice' of handing the karma to the devils who couldn't let you have your delusions in peace.
The amount of victimhood and bias is scary.
>on notice>for copyrightSigh, these poor little women trying to make sense of the world…
>>417529Lol, this isn't even bad. She must be more embarrassed that she got caught acting like such a privileged drama queen complaining about the price of consuming salty, brand name goods.
No. 417578
>>417569I think they all want to be kids with cancer. All they see is all the stuff kids with cancer get. They don't see the illness, the days and days of doing nothing, missing out, days in isolation etc.
They just see smiling bald children on make-a-wish and disney with balloons and cards.
No. 417618
>>417578>>417594Oh god, and they don't know that the reason why those children get showered with gifts and attention is because it's often literally their
last year on this earth! Their one little life to live is ending, say by Christmas. Half of these old bags probably don't even remember what it's like to be 8 or 9 years old. They couldn't comprehend living for only that long and having to act brave…no words man.
No. 417638
>>417622Don't worry, someone from your group is hunting our admin and we will be shut down within 24 hours :)
(that's how the internet works, right?)
No. 417654
File: 1510091819032.png (775.21 KB, 933x534, aub.png)
>>417502lel when people think the internet is actually a private safe haven and screenshots with their own admissions are slander or somehow copyright??
but anyway, this smug bitch gotta be through the moon. soon the whole nations, hecken maybe the WORLD will know how BRAVE she is!
No. 417656
File: 1510091925084.png (489.01 KB, 640x1136, 55F4EFEF-8A18-4AC3-84E8-61FE6C…)
So ‘chronicallytina’ basically just proved she lurks lolcow. Yesterday she was shit talking Autum in her stories then posted this today, which was actually posted on lolcow yesterday.
Tina used be known as ‘tsfight’ and has been posted here before. She goes through a lotttt of procedures and something ALWAYS seems to go wrong. She claims to hate being sick but seems pretty damn proud of all her tubes and is always posting hospital equipment n shit. She talks plenty of BS too and is super OTT.
No. 417718
File: 1510093897348.jpeg (485.99 KB, 750x1084, 8B539C82-B4B5-4E66-A004-5FFEA4…)
So Autum didn’t get her super special port but is over the moon about her PICC!!
No. 417723
>>417353I’ve been in a similar position and I was glad someone called me out on that shit. It wasn’t healthy to obsess over my health issues or make them super public, and i realized how toxic the spoonie “community was”. Many others here have been in a similar situation or were socially knowledgeable enough originally not to pull that shit. So how did we feel to be on that side? Kinda crappy at first, but it’s been fucking great since!
So yeah, we’re calling people out because the people that are posted here, especially the regulars, make it harder for us (actually sick people and doctors) to live our lives or give/get treatments. Some farmers will go too far, but the vast majority of the farmers who post in here don’t want to support spoonies because most of them are munchies or malingering little shits who make our lives that much harder.
teal deer: take your whining elsewhere and have fun supporting malingering / narcissistic lazy assholes
No. 417728
>>417371Well, it can
technically in EDS (especially cEDS with major skin symptoms), but I guess that wouldn’t be mysteriously then, huh?
No. 417776
>>417763Central lines etc actually scare me. I have no idea how even a munchie could be pleased about getting one.
I had one in my neck once and there are so so so many things I would prefer than to have that again.
I know I sound like a wimp but I'd take a displaced fracture reduction over a central line.
If your veins in your arms/ legs/ feet etc are still working don't get a central!!!
No. 417786
>>417784For reference as someone who has never ever got an infected wound/ cannula etc (even dodgy slow healing stuff) I have never ever considered my regular blood tests/ cannulas to pose any infection risk. It seems ridiculous that someone without an immune system problem would even consider this.
However it is a legit concern for a central line because they are dangerous!!! Especially for saline?! When you can just drink?
No. 417788
>>417786>>It seems ridiculous that someone without an immune system problem would even consider this. I’m confused. The person you replied to said they
*did have an immune system problem which is why they worry about simple sticks, so was this referring to someone like Autumn thinking they would get an infection from multiple sticks?
No. 417790
>>417787I'm aware I'm just one person but I have hEDS and have been genetically tested and don't have cEDS.
I have wide very thin scars that will randomly tear open.
I also am the walking definition (yes I say walking :P ) of the new hEDS criteria including heart valve issues etc. For this reason I find it annoying when people insist they 'must have cEDS' because of 'x with my skin'. Basically I just don't beleive anyone who hasn't had genetic testing saying they have vEDS or cEDS 'but their doctor just won't listen'.
>>417788Yes I'm aware that the poster has an immune condition and needs to be aware. I was giving the perspective of 'it is normal for YOU to think of this' but it isn't normal for someone who has regular needles to worry about infection if they don't have an immune condition. I think I maybe double negatived. Basically Autumn does not need a central line, it is a risk for a condition that poses basically no risks if you just drink more.
No. 417800
>>417790That makes more sense!
Yeah, there’s definitely soft tissue fragility in hEDS (all types of EDS as a matter of fact), so it’s annoying af when hEDS px (or non EDS px) claim that they must have cEDS. Diagnostic criteria of ALL types mention tissue fragility of some sort. And only a small portion of cEDS px have stretch marks (they are most common in hEDS and rarely seen in cEDS because of the cEDS elasticity), so if any of these hEDS munchies have “stretch marks without weight/muscle gain“ and are claiming cEDS without genetic testing, they’re likely 95% or so full of crap…
No. 417831
>>417819As someone with it, hell yeah I’m ready for me to move on. They’re making a disease that can be very
problematic and life changing into a fun game shitshow competition and it’s giving EDSers a bad name.
I wage PANDAS will come back, or the switch will be to MS (that of course they will fake the proof of or just say “I’ve had testing” when they haven’t)
No. 417888
File: 1510100800864.jpeg (252.94 KB, 750x1082, 743ECCFB-49F0-4DD8-AD96-5B8379…)
Either you smashed your toes on something and broke them or you didn’t! but Nope! It’s a medical mystery!! Because she’s so speshul.
No. 417898
>>417895harassment? i'm sorry how
also a tip: don't call others bad people and then wish for them to get cancer
No. 417904
>>417895Have you not realised yet that no one gives a fuck if you complain to a sheriff or not? Just do it and stop begging for attention.
Also wishing cancer on people whilst trying to take the moral high ground doesn't really work.
No. 417906
>>417888Vasculitis and broken toes have entirely different symptoms?
With vasculitis there is fever, nausea - general infection symptoms.
With broken toes there would be no infection symptoms? Your foot would just hurt…
No. 417919
File: 1510102103221.png (1.2 MB, 750x1334, 0B7A7A5F-01AA-4BE2-A867-865B04…)
No. 417923
File: 1510102181609.png (302.87 KB, 750x1334, 42D26C88-5CEA-43F4-96E1-DC7FE6…)
When poorly managed Crohns results in you developing EDS, POTS and GP :’(
No. 417945
File: 1510103112838.jpeg (276.54 KB, 750x1334, 45E8EC02-2F46-4A15-A79D-EA0DBA…)
Lots of people are calling out Autumn and she’s apparently blocking them. If you can’t take the heat, Autumn, don’t like the fire!
No. 417950
File: 1510103312107.jpeg (721.07 KB, 750x1157, 1CA61954-C28A-4291-8BBE-DF178D…)
Anyone seen this chick? She has generalized hypermobility spectrum disorder but acts like she has full blown EDS and claims to have an immunodeficiency (does not specify which one, which is odd). She has a semi-custom wheelchair that she either paid for or somehow got the European country she lives in to pay for it, and wears a vogmask
No. 417955
>>417950Idk if she's a munchie, but basically theres no difference between eds 3 and hsd
The new criteria hsd criteria is the same as the old eds 3 criteria from what i know? I could be wrong tho
No. 417970
>>417955You are wrong. Asymptomatic hypermobility is at one end of the spectrum, HSD is in the middle towards EDS, and EDS (including hypermobile type) is at the far end.
To your point about “idk if she’s a munchie”
- trying to get an electric wheelchair for her sooper severe HSD
- claims POTS w/o TTT
- takes pictures of pulse ox / bp all the time
- pill porn
- had to drop out of school and work but has tons of energy to be active on social media
- lab tests (bloods, mri) keep coming back normal but is convinced she definitely has more illnesses
Shall I continue?
No. 417973
>>417961EDS 3 is hEDS kek
EDS 3, hypermobility EDS (hEDS), hypermobile EDS (hEDS), and EDS hypermobility type (EDS-HM) are all names for the same thing.
No. 417982
>>417975Quote from her:
>>I’m not really functioning ATM … too busy calling nhs, doctors … being sick is a full time job- Aspen collar, no proven neck instability on mris
- thinks she has CCI (see above)
- gets dizzy, but it HAS TO be something different than POTS
- has to act especially ill while in public (invisible illness? no way!)
- has an inhaler and spacer because…?
- was perfectly capable standing / walking a few months ago
And the list list on and on
No. 417989
>>417502Satire is a valid fair use exemption to copyright laws.
This will be fun. We're all on 24 hours' notice… might as well spend it looking into Kariann Grissom. She seems to be a cow in her own right, of the pet-designated-as-assistance-animal breed. She keeps going on about society's disrespect for assistance animals when she has one for… yup, dysautonomia. I get it - a puppy is cuter than Florinef, salt supplements and compression stockings, but there is absolutely no evidence that dogs have any effect beyond emotional comfort for ANS disorders. But hey, what do I know… I'm just an ableist shithead with a medical degree, not one of the wise, smart spoonies who all know so much more than their ignorant doctors.
No. 417990
>>417977No one is making fun of anyone. We’re pointing out inconsistencies that make it hard for us
actually ill people to get proper treatment. “They’re not harming anyone” my ass. Tell that to my face with a wait time of 6+ mo for a much needed specialist.
No. 417996
>>417970This girl is a munchie.
But that definition of a spectrum that you're pushing is dumb and wrong, kek. The new criteria have the benefit of weeding out some munchies, but they're primarily designed for research (and through collabing with Lara and her cronies, who are idiots) and don't have ultimate authority. It's a huge mistake to oversimplify and assume that just because they're new, they're better. In some ways yes, in some ways no. It's obvious from your attempt to use a spectrum to describe hEDS and related issues that you don't have a good understanding of the mechanisms involved, but speculating like that is misleading for others. Someone can have hEDS according to the new criteria and be very well and functional (because hEDS isn't that big of a deal), or they can only "qualify" for HSD but because of their specific constellation of problems, be more unwell. That's not to say we shouldn't have hEDS and HSD categorizations since defined groupings for research are useful. But there are reasons why not all clinicians (within EDS) fully support the new criteria, and one is the somewhat false division implied, which you're over-emphasizing and misunderstanding.
No. 417998
>>417831PANDAS is a parents' disease, to explain why Little Archie is not a shithead but actually had her brain scrambled by streptococci.
Fowler's syndrome is on the rise. FND, thanks to asshole activists, now cannot be treated as a purely psychiatric disorder, lest you offend the patient's' poor sensitive souls, and hey presto off to wheelchair they go. Mitochondrial disease is always a good one, as there are enough quacks to diagnose 'mitochondrial dysfunction' from dark field microscopy, eye of newt and other totally legit peer reviewed techniques(TM). Epilepsy and narcolepsy are also beloved new Munchie illnesses
No. 418004
>>417871I had cancer as a 19-year-old, and it affects (not effects) me to this day. I turned my life around, went into medicine to help people. So I see assholes like you who fill their pathological need for attention on a daily basis, stealing my time and draining my patience from cases that actually deserve my time and effort. Someday, probably quite soon, I will in all likelihood have a relapse, and when I do, I will probably die from it. That's just how it goes. I've chosen to spend this time helping those I can. You and your attention seeking buddies are in my way - and for what? Instagram likes to make up for the fact that you are thoroughly mediocre? Something to be 'wrong' with you so you can be a brave fighter and play the activist when in reality you live with the blessings of good health and living in an affluent nation where you can indulge your medical fetish on the public/parents' dime.
But it's ok, at least while you're entertaining the sheriff with your misunderstanding of what discriminatory harassment is, you aren't taking crucial resources away from people in need of healthcare…
No. 418026
File: 1510106265861.jpeg (370.43 KB, 1936x1936, 785E680C-4ADC-4977-879A-E65458…)
>>417996Let’s be more of a jerk when trying to get people to understand your point ;) The spectrum description was released with the criteria so OP is likely mentioning that — I don’t think it’s them misunderstanding or over-generalizing but instead going off of something that may or may not be true, despite being published.
No. 418037
>>418029Your point? They’re still two separate to things at this point regardless of symptomology kek. There’s a possibility they’re one in the same but we won’t know until genetics are proven for hEDS and/or HSD. So my original point still stands: she has been diagnosed with HSD, her doctor told her it was not EDS, yet she acts like it is (not with symptoms, but with rarity, etc).
It wasn’t an EDS HSD debate platform, it was a “this girl is OTT, if not full on munchie for x, y, z”
No. 418038
>>417871FYI: here's a little primer on how medicine works. A diagnosis is made based on the overall clinical picture. That is, it's like a puzzle, with each test result, each thing the patient says, all of it, being a single tile. Now, some tiles are more important than others. In fact, some tiles can completely contradict a diagnosis. If I have dozens of tiles pointing towards gastroparesis but then witness the patient gulping down deep fried cookie batter by the pound, that person does not have gastroparesis, end of exercise. As such, screenshots etc. can identify patterns that are vastly inconsistent with claimed disability. You wouldn't know that, because you spend your life in a cocoon of well-meaning but not very smart people who indulge your every whim because to them, it is completely alien that someone would be so messed up on the inside as to fake or exaggerate a medical condition to get asspats. Of course, you and I know you're different. You live off that attention, you breathe it in like thick nectar or the mist-laden morning air of early Spring. And over time, you've convinced yourself you're a warrior and entitled to the attention you steal from others. You've convinced yourself you deserve this. You've convinced yourself you're actually unwell, but deep down, you know what this is about - the neediness, the love you feel you never got and the sense of psychopathological entitlement that was with you from the moment of your birth onwards, the little voice that tells you that you deserve this, and if they're not giving it willingly, you're going to take it by force. And living in small town Ohio, most people don't know better. Heck, with some patchy medical education, know enough to bamboozle your not very bright local PCP, whom you can get anything out of. Your local community has no understanding of medicine or health issues, and to them, you can play the poor sick single mother with POTS, oh my, who refuses to be beaten by this illness blah blah.
I hope you get to start your pet store and that it will not get too hard too soon, which is how people lapse into Munchiedom. Until then, please stop wishing illnesses a million times more serious than anything you've ever seen up close on other people who endanger your little sociopathic scheme to bilk your local community out of money and sympathy.
No. 418065
File: 1510107663400.png (Spoiler Image,1.19 MB, 750x1334, B524B73A-C9E9-4417-8A64-4F0584…)
I’m gonna say that if you are bleeding this much, you should probably worry more about that and stopping it than making a story on IG about it…
No. 418069
>>418026Sorry, I didn't mean to be a jerk, but it gets on my nerves that people are still lapping up The Criteria (barf) on here when the EDS Society was so heavily involved, we know they're shitheads, and the criteria aren't even agreed upon by all clinicians. There's a circlejerk of EDS-ers in here who love the criteria because they think meeting it makes them sicker and better than the cows, but anon arselicking is equally as stupid and makes them sound like OTTs too. Fact is, hEDS isn't a serious illness most of the time even if you do fit the 2017 criteria.
I agree there are also some good points about the criteria and too many people with ridiculously mild issues were getting an EDS diagnosis. But wanking over hEDS vs HSD is only embarrassing yourselves (people who do it, not anon I'm replying to).
No. 418090
>>418069Original anon you replied to here.
No, I completely agree with you. It strikes me in a bad way that the EDS Society was so heavily involved, but I used the spectrum as a basis to explain the difference (even though it’s a very bad explanation). There are good and bad things about the 2017 criteria; if anything, it at least attempts to clearly separate hEDS and cEDS clinically and attempt to prevent mild issues from being labeled as a multisystemic disorder, which was needed. Obvisously diagnosis title does not equal symptom severity nor is it the end all be all to wrap up lose ends. I should have simply stated “we won’t know the difference until genetics prove it”, but I did not, so… ¯\_(ツ)_/¯
Regardless, bendy.living seems to very much over exaggerate her HSD no matter what’s its called.
No. 418095
>>417950KEK, Yeah I know that girl, it’s me
But thank you for using for time stalking me, I know it takes some effort
Next time could you please do your work a bit better, since half the things you’re confused about is already written somewhere on my IG
To make it easier I made a little Q&A in my story, though I might as well answer your questions?
Do I come off as OTT sometimes? Probably! It’s not my intention what so ever
Also I’m not here to whine about how you’re all disgusting people, I find this website hilarious and agree with much of it
So yeah, though I might as well let you know that I participate in discussions on lolcow frequently and that I’m not crying over your accusations
Feel free to ask me whatever
Also thank you for all the follow requests, nice to see who some of are
No. 418107
>>418095Way to out yourself kek
These boards are anonymous for a reason and now all of your little followers who come here will see this and realize you post shit too. How do the ones who are posted know that it hasn’t been you talking about them this whole time?
No. 418112
>>418095oh yeah I'm SURE you're getting so many follow requests
eyeroll nice try at attention grabbing kek
No. 418117
>>418107I’m not really hiding that I think autumn is a faker (which is what I have commented on) so nah, no worries there
>>418112No I’m not getting a lot of follow requests but I have gotten 3-4 the last 15 minuets.
But yes, let’s say it’s abour attention ofc
No. 418122
>>418065Please tell me we are not looking at what I think we are……
And if it is that is not a blood disorder blood..thats more like a medium to heavy flow easily managed by women everywhere in the world..im going to remain hopeful that I am just seeing the picture wring and that it's her armpit of something?
No. 418123
>>418057And with that, the thread has come full circle, to Robyn, Queen of Munchies.
But generally, there are a few ways.
1) Non-medics can't differentiate between outright faking, PNES and an epileptic seizure. They may attest to the Doctor that you've had several seizures when, well, you didn't.
2) Theres technically no strict requirement for a seizure to be witnessed by a physician during EEG. In fact, some people do have a valid epilepsy dx without a seizure during EEG. It happens.
3) Some meds lower the seizure threshold considerably. So does caffeine, not getting sleep and so on.
4) It's not hard to Google what a postictal state feels like, and most doctors would be convinced. A patient I came across a long time ago, back when I was still a med student, did that. None of her seizures were ever witnessed, but her boyfriend attested to them and she described postictal amnesia and confusion, so she got her much coveted dx.
No. 418126
>>418065No, it isn't.
Bleeding from a serious blood disorder or thrombocytopaenia s/t malignancy or cytotoxic chemo looks nothing like that. That absorbed puddle of blood? We're looking at, say, 20ml tops. People with a serious blood disorder can have hour-long nosebleeds that cause an appreciable drop in Hgb, for instance. This? Seems like someone had a normal period and decided it's drama time.
No. 418182
>>418178Eh, I expected it and honestly don't care. This whole thread has given me a laugh tonight thought.
Some people are just so fucking stupid, it's like they want to be caught in their lies.
No. 418196
>>418186Honestly have no idea. People seem to think that there is some magical test for hEDS.
It's typically not genetic, but in a small percentage of those who actually have EDS there is a mutation in the TNXB gene. But other than that you can't do a genetic screening for it.
Plus, the Beighton scale is kind of bullshit. Most of those claming to have hEDS probably "gave themselves the test".
No. 418204
>>418186I think there are many farmers/lurkers on here who have fallen down the spoonie community rabbit hole and are here to try to validate themselves. I don't think that a lot of these OTT spoonies have bad intentions but I think a lot of them have gotten sucked into what seems like a supportive community but really ends up being a quicksand pit of one-upmanship. Many of them probably do think that they truly have the illnesses they have been diagnosed with and thanks to hashtags and social media it makes it seem like these are very common but "misunderstood" problems (I have worked in a branch of healthcare for years and never encountered someone with EDS professionally or personally - at least someone that broadcasts it.). They probably turned to the internet in the first place because they didn't have someone in real life who they felt could understand the problems they were experiencing. But once you enter the spoonie rabbit hole the little aches and pains suddenly become life threatening chronic time bombs.
Thats why the posts like
>>418176 are so irritating on this board. I know people get frustrated with cows but if you have to shout "I am so mad because I have problems X Y and Z and I only wish they knew what real pain was" then you are no better than the people you are complaining about. Express your frustration without making it a blogpost about how you are so much better than the cows. If you can't do that without listing all your diagnoses then spend a little more time lurking and learn how to not be a cow.
No. 418214
>>418204Agreed. I think a lot of people just want some compassion, and instead find a competition to see who can be the most disabled.
>>418203Also, I believe either it isn't as rare as they thought, or they're getting better at diagnosing? Lol. The whole situation around EDS is kinda up in the air most of the time.
No. 418274
>>418256ADMIN!!!!
WTactualF is happening?!?!?!?
No. 418294
>>418288Omg we don’t care about your precious diagnosis. Any moron can print a checklist off the internet.
ADMIN!! STOP. ALL. THIS. BULLSHIT.
No. 418418
File: 1510133050472.png (1.92 MB, 1440x2560, Screenshot_20171108-011242.png)
Someone is going to be featured on animal planet during the super bowl with her dog doing their souper speshul rescue tricks
No. 418471
File: 1510141332876.jpeg (557.09 KB, 1865x2632, FF507C38-93BC-4A9A-B12C-0CB473…)
Another past post , wishing she were sick… with cancer.
No. 418475
>>418471Of course she wants cancer, she wants the asspats and the excuse to lay around and not do anything. I very much doubt she’d still think that if she was actually sick with anything, especially cancer. What a horrible person.
(Also, I do not believe at all that 1/4 of pots patients are disabled, deconditioned and not following treatment guidelines, sure, but not permanently disabled. Of course letting them get wheelchairs like so many of our cows isn’t exactly helping either).
No. 418499
>>418393Kek, I saw someone (don't know who it was, so can't post screencaps - sorry) say "when I am at the doctors my heartrate is always pretty high, but they still think I'm fine".
Ok. So, you are nervous when you see a doctor. That's OK, it happens to the best of us. I would imagine that's only worse when you are trying to fake your symptoms, so I sympathize.
No. 418501
>>418471She's really obsessed with cancer, isn't she?
I mean, I can understand it to
some degree, but she is taking it SO much farther. I've often heard people with invisible illness say "at least if you break your leg, it's clear to people that you can't do everything". I get that. Invisibility of an illness can be a blessing
and a curse. But "wishing" a broken leg (not even wishing it, but comparing the visibility of it to your own disorder) is SO, SO different from saying "at least if I had cancer.." etc. That's crazy. And I could understand her
thinking that (she is, after all, clearly mentally unwell - I can imagine struggline with invisible symptoms and feeling misunderstood will take your mind to crazy places) but I'd think that she would be ashamed right after for even thinking it. Not Autumn though. It's not just a thought that pops in her head and that she is trying to push away, it is something that she thinks of often and she posts in a public space over and over.
That's just beyond creepy. She's not some small kid seeing the kids at the childrens' hospital get to go to the Zoo at night or get a giant stuffed toy without understanding how sick they are. She's a grown woman who KNOWS what cancer is and she is very deliberatey posting how she wishes she would get the same special treatment dying kids get.
No. 418506
>>418471>>418501She is taking it to another level.
I understand the sentiment of wanting to have a visible illness so that people can better understand how you feel (e.g. severe depression can make it hard to get out of bed but try telling that to people and some will say "just don't be sad" or "going for a walk outside will cure it" but nobody is going to tell a person with cancer to just suck it up and get out of bed).
However, Autumn is taking it way beyond that sentiment of wanting to be understood. She wants people to be surprised by how much she does (she couldn't last more than 1 shift sitting at a cash register) - she is basically saying she wants to be seen as an inspirational spoonie warrior. She wants to be seen as brave for doing basic everyday tasks that adults perform every day (illness or no illness). A lot of people with disabilities actually find it insulting when you call them inspirational for doing basic life tasks.
No. 418508
>>418507>>418506She WANTS to be inspiration porn #spooniewarrior
I really think we're going to see this spiral now she is getting a central line.
No. 418530
File: 1510148691085.jpg (464.35 KB, 1635x1274, k9G7oBK.jpg)
So Aubrey is getting tested for narcolepsy and also has had testing for MALS (see next post).
No. 418531
File: 1510148792444.jpg (370.95 KB, 1713x1281, 6uayDi9.jpg)
How long do we think before she hops on the EDS train? I've seen her do stretches in the hospital so she's not too stiff. Who knows, she could have some hypermobile joint or even more than one and it could give her a diagnosis that's not as controversial as chronic lyme is.
No. 418535
>>418531(Although of course EDS wouldn't justify the longterm IV abx, so I guess she'll keep the Lyme dx too. But just as she can use her POTS diagnosis for doctors who don't believe she needs e.g. a port for her Lyme treatment to say she
also needs easy access because of her POTS, she could use an EDS dx for doctors who don't believe she needs a walking aid/wheelchair/brace/painkillers etc. for her Lyme. Just hope I haven't given her any ideas now..)
No. 418541
>>418530is that her first time mentioning narcolepsy? i havent seen her tag anything or mention anything outside of uwu muh pain!
probably gonna shoot for those amphetamines now that her spoopy ass is gaining weight from her tube.
No. 418547
>>418541I don't know. And I'm not really up for going through her whole account, tbh.
It's odd though how 'common' narcolepsy is becoming. It's the new EDS in that respect. And I'm sure there are doctors out there who are willing to diagnose idiopathic hypersomnia/excessive daytime sleepiness (another EDS! Kek) as atypical narcolepsy/narcolepsy without cataplexy.
You're using a shitload of (IV) meds, are complaning of pain, have allowed yourself to become deconditioned as heck, and
now you're wondering why you are tired? I think they think that narcolepsy meds will make them have more energy. Guess what: it doesn't work like that. Maybe, temporarily. But it mainly makes you NOT fall asleep. Almost like they were meant to do that, huh? Doesn't do jack for actually feeling tired unless you also make sure you get some sleep and do some exercise. Working helps, too.
No. 418558
>>418553Wait, does she say somewhere she doesn't have GP, or is that your interpretation?
(Which, btw, could be totally right, as one of her doctors asked her if maybe she couldn't eat because of stress while she was in hospital for her tube surgery. I can't imagine that would happen if she clearly had a severely delayed gastric transit.)
No. 418563
>>418557Somehow I think even doctors may find it easier to give them a tube or whatever. Maybe they'll think "she already has a port, a tube is way less risky" or "she has a port, so
obviously my colleagues have already determined she is actually really sick" and just go along with what they ask for.
No. 418663
Not wk-ing, but here’s a long post so hold onto your hats.
A lot of people that have recently been made aware of this thread seem to be under the impression that this forum is here for the sole purpose of insulting disabled people. I'm going to continue to respect fb group rules and the privacy of those in the closed groups (I'm not the anon that posted the SS from the FB groups before), but I will say that a lot of people there seem to not understand the reason for this thread.
A good majority of these people posted here are scamming others out of money and putting a strain on the healthcare system (regardless of country). No, I don’t think that screenshots should have been shared from a closed group/private account, but honestly there a TON of OTT spoonies and people just reaching for any diagnosis that they can get. I feel like the person that posted the screenshots failed to show the farm how complex these groups are. It takes more than a few screenshots to understand how these groups work, and it’s way more interesting and sad than you think.
The way I see it there are 5 different types of members of spoonie support FB groups:
1. Parent of child with illness that are there to learn more about the illness (~10%)
2. People new to the illness, yet to discover all of the OTT BS (~10%)
3. ACTUAL sick people (~20%)
4. People in the process of genuinely getting diagnosed (~10%)
5. And finally we have the people there just to ask if that spot that is definitely a bug bite is definitely MCAD and they are the same people that suggest wild diagnoses for random (sometimes normal person) symptoms. (~50%)
From reading comments, some people commenting and getting angry and/or hurt over this thread haven’t even read it, they have just heard secondhand that it is a “group to make fun of disabilities”. Most people in the group are taking it personally, as if the group as a whole is being attacked. They are failing to see that this thread supports ACTUAL sick people, but calls out the problematic/OTT/munchie.
Yeah, I think some posts here have gone too far from my own personal moral standpoint, but as a whole this thread is truth seeking and gives credit where it is due to those that have actual medical issues and don’t scam their peers.
So to the people of Facebook: It’s not all about you. Just because you are a part of some “support group” that has some bad apples does not mean that this thread is making fun of your legitimate disability and/or illness. But if you poorly represent the community by spreading false and dangerous medical advise/information or attempt to deceive the public for attention or money, you can be assured that this thread IS talking about you.
TL;DR: lots of people upset on Facebook, but most have the wool pulled over their eyes and can’t see that they’re surrounded by muchiedom.
No. 418711
>>417431Yay, measles, hooray for childhood deafness and possible death. Idiot.
It SUCKS looking sick. No amount of concealer can hide the fact that I'm exhausted all the time.
No. 418733
File: 1510163138022.jpeg (474.03 KB, 750x1124, 1344CE6B-43E2-4664-AF61-6567E3…)
She got her soooooper special PICC
No. 418755
File: 1510165231275.png (1.37 MB, 1440x2562, 20171108_111733.png)
Yes now you can make your medical "accessory" even more noticeable because they are so much fun…
No. 418791
>>418755Get a port put in while you’re awake, and then maybe you’ll have something to brag about. Except not really, because nobody cares, and really no one wants to hear about or see it.
Also, none of these munchies realize that their excessive thumbs-up’s makes it pretty obvious they DON’T have eds.
No. 418838
>>418663It's interesting to see the breakdown, and I think you're probably being conservative with the 50% estimate.
I honestly don't care if the Facebook people do end up reading this, nor if their jimmies are rustled. But just to get things straight, I would say that the majority of posters on this particular thread have some kind of sickness or disability, which is the root cause for our making fun of the munchies.
The following is addressed to the visitors from the FB group as a whole:
Because actually sick people have sat in waiting rooms listening to some entitled dipshit in an examining room screaming about how they're not being treated fairly. We've watched our wait times crawl over the hours while people who have nothing more wrong with them than mental illness and obesity take up our appointment time, leaving the actual sick people, who don't want to be there to begin with, try to cram their appointment in the 15 minutes left of the hour appointment you were supposed to have.
We've seen doctors rush into the rooms where you're having "an episode" of whatever flavor illness of the month, and walk back out rolling their eyes within a few minutes. We hear them say no, they're not going to admit you, just drink more water.
We DO know you in person. We've been in waiting rooms with you, watched your behavior, and what's prevented us from calling you out in public is not engaging in nasty behavior in a place where people are trying to get well.
So no. We don't have the plethora of personality disorders that prompt you to encourage us to fight you, to give you our real identities. You munchies are fucking crazy, and we're all rather tired of your bullshit.
No. 418884
>>418838^^^ THIS.
I've probably mentioned it a few million times that I've been on both sides of the stethoscope. Not wishing to blog, here's an important thing I learned.
We think that pussyfooting around the fact that some people are pretending to be sick for sympathy is somehow in the patients' best interests. I was a freshly minted MBBS when I saw the opposite, this time as a patient: a whole ward of sick people, some terminally ill (clinical oncology), having their meds delayed because a spoonie with six billion chronic conditions who was given a bed there due to bed shortages for pain control was constantly keeping the nursing staff occupied. She had fainting spells and pain episodes and demanded her Farrell bag to be changed every few hours and she refused to selfcath ('I'm in a hospital, I cannot possibly be asked to CISC!') and everything else under the sun. Meanwhile, the dude across from me having chemo for SCLC was puking his guts out because the nurses were too busy with Little Miss Whiny while he was waiting for his Emend. Eventually, after four days of this horror, she was discharged. And lo and behold, that afternoon, I was downstairs to get some fresh air when I saw her being wheeled down the road by her male friend, tucking into a massive box of chips and cheese. Yes, the TPN-fed serious pain case, devouring a barrel of carbs and fat.
I was fortunate enough to find my way back to the land of the living and, eventually, medical practice. Now, see, one of the things you have to make your peace with is the fact that you can't save them all. Some of your patients will die. Some will die because of your mistakes, or because of avoidable things. I can live with that (if you can't, medicine will kill you). What I can't deal with is the constant nagging worry whether I could have saved Mrs. Smith if I had not been held up by the very obvious anorexic disguised as EDS case. I can't refuse to see them, blacklist them, report them or even tell them I'll deal with the actually sick people first, and I'm actually ok with that - it's scary to have the power to refuse to even consider a patient, and doctors don't need it. But I lack viable ways of diversion from the ordinary path of medical treatment in my speciality. I can't make a binding psych referral, I cannot refuse to see her unless she's been cleared by a shrink and I cannot call her on malingering, no matter how evident. In fact, I can only report it if the case has a third party payer or social security fraud aspect. Apparently, our system does not think drawing critical resources from the actually ill, for the sake of instagram photos, is acceptable. I have managed to clamp down on patients taking photos with me in it, but of course it's their hospital room, they do what they want. A number of our nursing staff has complained about patients taking photos of them hanging IV bags, God knows why.
And the worry that I could have served my genuinely ill (with a disease I can at least treat - I'm a gastroenterologist, not a shrink) patients better if I had somehow managed to push the known malingerers and Munchies under my care away is something that haunts me. I can't be in two places at the same time. Every time a patient checks in to my clinic but goes home before they're up because Munchies think an appointment means they will have to tell me their life story (I have some very complex patients, and they/their caregivers can respect my time, so why can't these kids?), I worry if they had some red flag issues going on that I could have spotted if I had the chance to see them, which I would have had if McWhiny could have kept the appointment time to her allotted hours. And I have to deal with the insane shit-stirring every time they don't get their way: tell them they can't have more pain medication from me as they've got a pain physician already who ought to be treating that aspect of their illness and they sic Trust lawyers on me, tell them their tests were normal and I get a call from the patient's GP (who often enough happens to be a friend/relative) saying it's unacceptable I disbelieved (the trendy world right now is 'invalidated', perhaps even 'gaslighted') their patient.
This isn't a harmless game. Not to the millions of sick people who rely on the resources these parasites are taking for their own emotional gratification.
No. 418889
You can be an OTT spoonie, but you'll never be THIS OTT spoonie:
http://superpunkjellyfish.tumblr.com/post/158907782680/about-me
> i’m autistic, i have adhd, c-ptsd, continuous dissociative amnesia and prosopamnesia. i am constantly dissociating. i have chronic pain in my hip joints, which i think has been around since i was a teenager. it can be triggered by walking for periods of time longer than ten minutes, standing for the same amount of time, sitting without getting up ((time varies)), or sometimes my hips just decide to hurt. i’m a cane user. i use the spoon theory. i occasionally suffer from delusions and hallucinations. the hallucinations are generally minor, such as seeing movement from the corner of my eyes, or thinking i see bugs when there isn’t anything there. related, my favourite bug is a wood louse, which i call melvins. I love spoonies who goaded your shrink into diagnosing them with C-PTSD instead of BPD.
No. 418897
File: 1510175772715.jpg (303.87 KB, 1892x1120, 64ZenRo.jpg)
Going through Aubreys account is.. interesting, shall we say.
The comments on this post are as well (will post them, too)
No. 418902
File: 1510176194062.jpg (382.95 KB, 1968x1196, mmYGKaO.jpg)
>>418897She gets a lot of reactions of people saying their experience is exactly the same: they have Lyme as well and their seizures didn't show up on EEG, too. But of course, that can't possibly mean you have PNES. No way.
Also, can someone please tell to me how Lyme could cause seizures that are not epileptic but also not psychosomatic? Apparently, it IS happening due to brain damage/neurolyme or whatever, but it's NOT epileptic?
Curious, isn't it? How so many peole with Lyme apparently have "real" seizures (by which they mean, in this context, non-psychogenic) but also not epileptic? I.. don't get it. Don't even understand what they could possibly mean by that.
No. 418923
>>418913You would be correct.. hEDS is underdiagnosed and probably not rare (though new estimates say that it’s still only like 1/2500 – technically still rare). It’s super funny to watch these munchies whine how “someone said my sooper severe hEDS isn’t rare!”
The person you replied to said that EDS (the way the phrased it, as a whole) isn’t rare, however (1/5000). Don’t really care if it is or not, but statistically – as a whole – it is because of the rarity of types like vEDS (1/250,000) and dEDS (small number of people worldwife), and technically even cEDS (1/10,000-20,000). It’s clearly not as rare as, say, Osteogenesis Imperfecta however.
No. 418930
>>418804Because:
1. Some of us here have the illnesses these people are exaggerating, lying about, faking etc. It reflects badly on us, and distorts people (inc doctors') views of the illnesses which can badly affect us.
2. The worst of these people are preying on actually sick people for attention, gifts, money. That's frankly disgusting.
No. 418943
>>418902O, forgot to point out: she can never catch her seizures as well, 'cause they mostly happen at night and she
doesn't want to wake up her boyfriend. Kek.
No. 418949
Ok
>>4188891. If you have autism then you may have PROPRAGNOSIA but you don't have prosopamnesia, there are two recorded cases EVER.
2. She in no way has 'continous dissociative amnesia' otherwise she wouldn't know she had it. That is where you don't remember anything since a set point to the present.
3. C-PTSD and BPD/EUPD are different things though many people with CPD/EUPD will have experienced trauma. Additionally often women with autism are misdiagnosed with BPD/EUPD.
However, I'm by no means whiteknighting her all her stuff about disoociation and prosopamnesia is just flat out a lie. Additionally people who are 'constantly dissociating' don't have time for a tumblr because they spend hours doing nothing/ doing nothing directed/ useful as their brain 'checks out'.
No. 418950
>>418943The idea that she can notice she's having a seizure then wake up her boyfriend is laughable!
Also, from experience, you know when the person you're sharing a bed with is having one. Unless you've hit the NyQuil.
No. 418964
>>418947But that's the thing. Of course, NEAD/PNES would be a sensible diagnosis. But they don't want that diagnosis. They can accept that "non epileptic" part, but that that means they are psychogenic, is not something they'd be willing to accept.
(Though of course, part of that is because many people think that psychosomatic is the same as "the doctor doesn't believe me" or "they think I'm faking it", but even when people truly understand what it means, they
still won't accept that. And as you say: it's nothing to be ashamed of. In a way, it's a smart way of your body to tell you that something is wrong. But for some people, everything just
has to be 100% somatic because admitting that there is a psychogenic factor, or even that they have depression or other problems, is just something they aren't willing to do.)
No. 418984
>>418982I was honestly quite relieved to get it. Though I can be a bit iffy about it in terms of it making it harder to get PTSD issues addressed, knowing I have it has made me much more self-aware as I've known what behaviours to try to change, what patterns to work my way out of.
I guess doctor shopping happens in any area, though. Almost impossible to do on the NHS, luckily.
No. 418988
>>418986It is diagnosed, I have a close friend with it but she was only recently diagnosed (late twenties) despite documented trauma since age 6, social services etc. She has had periods of wellness and success but is so ill right now in terms of dissociation etc that she is in hospital for her own safety (when not disscociated she isn't at all a risk to herself etc.)
Obviously biased because I have a friend and I'm sure you can be less ill and be diagnosed (I really hope she will be less ill in the future!) but a lot of people claim to have a diagnosis who just plain and simple don't. It is exremely rare to even get it diagnosed via community psychiatry team (CMHT) usually you end up in specialist mental health services before diagnosis.
(UK)
(obviously saged)
No. 419053
>>418897I’m honestly surprised no medfag has mentioned dystonia or that this chicks doctors didn’t suggest it? Dystonia is sort of like a muscle reaction to meds they don’t agree with the body (like being on antibiotics that you don’t acrually need…) and can be mistaken for a seizure cause it causes that all too famous grand mal look of full on shaking and “seizing” but the difference is that dystonia reactions are pure muscle and no brain involvement - it’s all Mast cells fucking with you cause you took something you shouldn’t have taken. The pt also remains conscious therefore remembers the episode and obvs it wouldn’t show up on an EEG because it’s not a seizure.
Boom mystery solved. Get off those damn IV abx and your so called seizures will stop. You’re welcome.
No. 419085
>>419053Cerebral palsy fag here.
I have dystonia in my body from neurons constantly misfiring in my brain.
This is what upsets me about these cows. If you're disabled from birth, you are given life lessons from doctors and therapists as a kid. You are given a small stipend from the government, and when your parents die, you are given enough money to just get by and survive.
Sage for self posting blogging faggotry.
No. 419105
>>418905The girl she mentioned it to is on private so I don't know much about her (although she lists 5+ illnesses in her bio) - but based on that interaction that girl is 95% of the way there on her own anyway.
The girl's doctor refuses to give her IV saline so she has been going to urgent care because there is "a doctor there who knows a lot about all of my conditions and will give me IV saline whenever without a script". She claims her GI problems prevent her from drinking enough to take care of her POTS. Sounds like the urgent care doctor is just giving her what she wants (IV saline) since it probably gets her out of his hair. And if he is a doctor than he doesn't need a script to do it. She doesn't want the regular doctor to know she is seeing the urgent care one and she is looking for a new doctor (aka doctor shopping until she finds one who will give her what she wants). Sounds like a serious drain on resources.
I would guess at this point anyone who is turning to Autumn, who is so obviously a munchie, is probably almost there themselves.
No. 419155
File: 1510194448911.jpeg (219.07 KB, 750x824, 220B032B-25CB-4E4C-8A2F-713735…)
bendycripple is back at it again with her psychosis that reads like a trashy teenage novel. the anons she is getting calling her out though are golden.
No. 419173
File: 1510195106994.png (1.16 MB, 640x1136, IMG_1732.PNG)
Seems legit….. (medfags?)
No. 419213
File: 1510197078081.jpeg (244.03 KB, 750x537, 4DCFC202-5729-416F-8E16-ECFF9B…)
Wtf. Autumn claimed MS and ALS in the tags here?!
No. 419238
>>419234This was
before the hEDS…
7 May No. 419248
>>419205Breakspear isn't only a health clinic, it's a diagnostic miracle centre where you can be told you have things no other place has even HEARD of, apparently.
If MBV stopped taking all the supplements they gave her, I guarantee nothing bad would come of it. They're just expensive woo for overly anxious anorexics.
No. 419303
>>418889This person has their own thread at
>>412346, theres all this shit about them molesting their sister and claiming to have pedo OCD, they also legally changed their name to Castiel because of Supernatural
No. 419352
File: 1510211469259.png (1.96 MB, 1440x2560, Screenshot_20171108-230757.png)
400mg benadryl in 4 hrs.???
No. 419367
File: 1510215742466.jpeg (279.61 KB, 738x1251, 14E3B02A-1071-44D8-A18B-9DBA6A…)
So the GoFuckMe munchies can now face legal trouble/fraud convictions… The article claimed she scammed that money out of family/“friends”. She was also ordered to repay some $79,XXX out of the full $260,XXX lol
No. 419373
File: 1510216068096.jpeg (191.09 KB, 750x1186, 4214A8F6-4EA4-4EFA-92CF-704A66…)
sentenced to prison for 2 years… collected a whopping total of $264,163 while pretending to be dying from cancer
No. 419378
>>418217THANK YOU! Enough with the EDS TALK! This is NOT an EDS discussion board and I am sick to death of all the posts dissecting criteria and symptoms etc. TAKE IT ELSEWHERE. This is the second time this thread has been overrun with EDS faggotry. If you are going to post about EDS, just don't. ENOUGH ALREADY.
Also this is not a "I am so pissed at certain spoonies because I am REALLY legit sick!" hugbox. STOP. You are as bad as the cows being posted. GTFO.
No. 419460
>>419352kek the maximum
daily dose is 400mg. The maximum rec. in a 4 hr span is 36-78mg. Girl, unless Benadryl has ZERO efficacy on you (ie it wouldn’t even treat your allergies), you lying through your story.
No. 419461
>>419367While this is true, please remember the rules of lolcow. You cannot engage with munchies outside outside of this thread. Although you would probably love to report their fundraisers, without solid proof beyond a reasonable doubt, you should not. While it’s pretty obvious who some of the munchies are (those who have GoFxckMes in places with free healthcare), there are a good lot of people in here who may / may not be munchies like we claim and a report can do damage.
teal deer; be careful and mindful reporting fundraisers or the legality can turn back on you
No. 419529
>>419503What, exactly, is wrong with being judgmental?
Being judgmental without understanding the situation is no doubt bad. But most of us do understand the situation. Most people here are, or have been, severely unwell.
As for your issues,
1) the idea that keeping to work led you to be permanently flared up makes no medical sense,
2) your 'fatigue', however much you love to whine about it, is not the worst thing in the world (trust me, you haven't seen fatigue until you're on chemo and your Hgb is around 6.5 and sitting up in bed makes you pant),
3) holy incoherent writing, Batman. Just don't blame it on brain fog.
No. 419583
>>419569It must suck having to go to school and contribute to society. Give me your address and I'll share some of my trust fund pity bux for you.
BRB. Making it rain at lunch with a bottle of wine. Then I get to go back home and watch tv and work out.
I fucking hate cows who whine about having to work. Social security, section 8, and food stamps will take care of you for life. When life hands you a shitty hand, take what you're entitled to due to real medical issues, and laugh at others who are so sad that you are actually disabled, and not contributing to society.
-lupus warrior
No. 419584
File: 1510248395224.gif (767.61 KB, 275x220, 1466014012899.gif)
>>419568>>419550>>419569>>419570welcome to the board. sorry you got found and called out for being ott. maybe review your life. now politely fuck off cus this shit is getting old
No. 419589
>>419568If you are actually sick, not OTT and not attention-whoring, we are not talking about you here. It's simple as that. If you'd take the time to lurk, you will see that sometimes someone is brought up and when others say "no, she's actually sick, look at this post/this information" they are dropped just as quickly.
What we DO talk about, is those people in your group - or anywhere on the internet - who always copy the symptoms of others. Those people who always post about something major in their life or a major symptom they 'suddenly' developed because someone else in the group is having a particularly bad time and all the attention is focused on them. Those people who ask you if you know a doctor who will diagnose them even if they don't fit the criteria of your illness. Those people ONLY have certain symptoms when others are present. People who are over-dramatic about every little symptom. People who go to specialist with fake symptoms. And whos histories are changing all the time. If you're active in a support group or on social media, I'm sure you've seen those people, too.
They are the people who steal resources from the actual sick. Who abuse the time of doctors and who betray the patient/physician relationship. Who make it more difficult for
everyone else, including YOU, to be believed by their doctors and to get a little support from family an friends when you need it most. They cannot help or support you, because they either are dealing with people pretending to be sick, or because they don't trust people anymore because they have been lied to so often. Those people who make it difficult to get treatment or funding you need, because the government and your insurance can't trust people either.
THOSE are the people we make 'fun' of. Not even that per se, it's more that we point out inconsistencies in their stories. And yeah, there's fun too. Some humor is often needed to get through the day you know? Because just like you, the majority of us are people who
know what it is to be sick. Most of us are either sick or disabled ourselves, a caretaker for someone who is sick, or work in the medical field, or any combination of those. So yeah, it's safe to say most of us here DO know what it's like to be sick.
So if you are actually sick, I'm sure you're just as fed up as we are with people trying to screw the system and infiltrate in support groups of people who ARE sick and who are just trying to find some information or support. THAT is the evil you should be fighting.
No. 419599
File: 1510250320868.png (817.73 KB, 640x1136, 0D73FF42-2EB7-4868-9658-3D36F0…)
Look who’s at the airport and now needs a vog mask and wheelchair (despite not having mobility or immune problems). Also, no one who’s feeding tube dependent can survive running a pump at 35 ml/hr. It would be physically impossible to get in enough calories a day to live. And of course she’s vlogging about the whole “experience”, despite how exhausting she claims it is.
No. 419895
>>419568
> Just like when people are anti-gay and then they have a kid who becomes gay I think that's hilariousI don't know if you're off your meds or you're really this stupid, but ok… wanna talk about karma? Let's talk about karma. Do you know who is due for a big meeting with it? People who pretend to be sick. We just keep mocking them, but that's nowhere near as fearsome as the karmic retribution they're due for all the time, money and medical attention they stole from others who needed it more. If they only had to live a day as severely ill as they pretend to be, they would realize just how horrid their exploitative behavior was. That's karma. Wanna talk about karma? Talk to the munchies about it: Aubrey the totally well girl who is prancing around with a feeding tube, the EDS whiners who think wheelchairs are a fashion accessory, the POTSies who are actually just lazy an deconditioned, the teens who have realized that in this super-sensitive society a chronic illness is a lifetime ticket to goodies, free money and activism asspats, with no expectations because to expect something of a disabled person is 'judgmental'.
Oh, go fuck off.
No. 419910
>>419602If you're feeding from a non-sealed bag, it is a very bad idea to keep the bag exposed in any way. One, non-sealed bags have natural atmosphere so heat and light is more likely to accelerate the contents' decay and decomposition. Two, from time to time, the plug on top can spring open and the consequences are not fun. There are special compartmented backpacks with an externally exposed pouch for the pump that allows patients to conceal their feeding tube - in general, Munchies tend to not want the special backpack but come into the hospital with a year's supply of tube pads even before they have gotten their tube! Sane people, however, really love feeding backpacks: they're safe, sturdy, keep your food from sticking to your stuff if the plug opens and to most normal people who want to be discreet about their tube feeding, it's a great choice. But of course it's all different in Munchieland. Reminds me of those people who have a suprapubic and instead of having a leg bag, they carry around these big-ass bags of their own urine, some even keep the whole thing exposed (hello world, I pee in a bag, look at my urine!). Same for TPN.
No. 419947
File: 1510274412375.jpg (602.74 KB, 1080x1969, Screenshot_20171109-180742.jpg)
Any Dani decoders around?
She has been whinning about her appt in December was to far away and people kept encouraging her to call them to get in sooner if they have an opening or see her pcp inbetween if temple couldn't get her in sooner. Her response to the local family dr was laughable bs, it's been posted here. But of course Dani won't do anything she needs to specially when people try to help so she kept saying "I emailed them but haven't heard back. I'll call in a few days if I dont get an email". And again she emailed. Go figure.
So everyone knows she had an appt. At temple in december.
But posts this?
Attention post to remind everyone how sick she is and has to "travel" 90 minutes for out of state GI care because she's too special for the whole of her home state and so special she's in a research study fucking up the data they are getting?
If she got in sooner she didn't say.
This attention seeking post is the most annoying to me for some reason.
I can't wait for her next round of testing.
I SORT of hope they give her tubes, so she ends up in the hospital from fucking with it and they discover what's really wrong with her.
I highly doubt they'd give her any stomach access with her purging history, but I sort of hope they do only for the purpose she gets caught red handed and can get the actually medical care she needs.
The research study is most likely with a pacer company..which means she would/could if dr orders it.. get a temporary one she can whine about carrying (like the smart pill and heart monitor that she wore crop tops with to "challenge her body dismoprhia" mainly to show off the monitor leads) before they'd place a pacer to see if it even works for her.
Then the tubes would be next if she was actually sick. Her GP is so mild and self inflicted that even a pacer is laughable….even her taking motility meds are laughable. (She hasn't been on the proper motility medication "timeline" and still thinks they will go straight to tubes)
She doesn't need anything but she thinks she is needing everything. But the more she pushes for all the stuff she wants (all the tubes surgeries procedures everything under the moon) the more they will have her admitted where she can't really continue with hurting herself.
If they give her stomach access they will pull it once she goes from not being sick to being very sick from purging through it.
She has had no hospitalizations in years..her labs are hardly ever off (hardly off if they are. Her high K drama was completely made up)
So to go from fine to malnourished will raise flags.
Most importantly Temple won't give her tubes because there is no indicator she needs them for those reasons.
No. 419964
>>419947That…facial expression
I pray to every deity out there that Dani does not get tubed, ever. She'd end up causing so much more harm by fucking around with it.
sage but I mostly just feel sorry for this girl. I mentioned it a million threads back but I was in the same treatment center with her back when she was less OTT and idolizing ED. Even back then I assumed she was a little slow in the head, and despite all the batshit crazy things she says and does I wish she would just get help for her psych issues and leave the medical toys alone
No. 419993
File: 1510280034862.jpeg (553.87 KB, 2078x1181, 0B11E50D-5909-4B31-A0E4-4A1F64…)
Munchie who’s geneticist THINKS she has kyphoscoliotic EDS, never actually genetically tested, then automatically says she has it in her Update Post… then complains about weight loss (when she has a history of anorexia) and asked for a PICC and the cardiologist said NO… surprise surprise. But she’s still seeking a doctor who will do it . It’s another autumn
No. 419995
>>419964That's why I sort of hope they do the tubes.
It's dangerous, but they wouldn't place them if not medically needed. These large motility clinics don't screw around like other places and Drs. At most she might eventually have a temporary NJ.
I don't want to see her (or anyone) hurt themselves but she would do it and she would end up in the er before things get to bad because she loves making ER trips for everything that's never wrong.
So she'd start feeling dehydrated, go in as soon as she can.
She focuses on her physical state obsessively so any little change would be noticed.
The kicker is if she got a G tube or a GJ her formula would counteract all purging..so many people have no problem with draining stomach AS NEEDED because they do their feeds properly and get everything from that. And her intestines work fine and her stomach is fine and her body absorbs liquids completely. It does solids too unless she purges. At her rate of delay food will digest and go further, just takes a little longer but nothing life style changes can't fix.
Frankly she needs to get on the right med regime, actually do it, actually do whatever diet they want her to do and actually do it, go through the different med regime if one doesn't help or whatever including domperidone. She can take reglan..only recently she started saying no. My guess is to limit her med options to erythromycin because domperidone is too expensive (it's really not. And she gets money for her illness for this reason and if her dad just spent all that money on skandishake she probably won't drink he could buy the med for less than that was) and shes allergic to Reglan..
But it's Dani so nothing will be done as she says she's doing and she just wants those tubes so bad.
She has so many different accounts to keep up her own bs I think because she is still milking FB groups and private about how to get the tubes but then turns around and says she's not and will wait and see what the dr recommends.
-diet changes
-exercise
-some life style changes
-medication trial and error over a long period with tests to monitor the stomach emptying to see the effects or other testing
-botox which is commonly done every 3 months and takes more than one treatment for some people
-check up testing
If the delay isnt improving with these treatments and she's actually sick like weight, vitals, blood work etc more invasive measure would be taken.
-pysch
-temp. Pacer
-pacer check GES
-pacer surgery if it fixed the delay
- if not NJ trial
- if her labs improve with feeds then usually J tube but some do choose to stay with NJ as J tubes are painful for many..and less scars.
-NG as need for air release
-GJ
She would benefit from a fundo surgery surgery . For her very real gerd issue. Which would probably "cure" her severe GP. It's a surgery to tighten the sphincter to help prevent acid back flow and some people loose the ability to vomit and purge afterwards
The other sphincter where the stomach goes to the intestine (where botox is usually put) has helped improve motility too.
And of course the gastric bypass.
Which blows me away we don't see more of that here..since most cows here hide their ED as GP
You'd think they'd be all over a gastric bypass.. (just like all these procedures surgery timeline it varies person to person what helps.)
Basically the order this goes give or take some. .given her labs are always fine she won't get down the list like she wants. She literally shows no symptoms or signs of this little delay effecting her health. There is no physical reason she can not consume a liquid and puree/soft food diet. People live through very long periods of this diet, including forever.
And if she truly felt as sick as she says she would have no problem sticking to that diet to start with!
No. 420021
>>419947>>419964>>419995She definitely doesn't need to be tubed. In her last video she did admit that she wanted a tube even though she knows everyone will give her flack for it. She thinks its the only option because she just can't drink enough to stop her from getting migraines (this sounds a lot like POTS spoonies with mild GP who try claiming they need a tube and/or port because they simply can't drink the tons of liquids they need). We all know that Dani isn't following any of the recommendations that would allow her to feel better. However, I am not sure Dani fully realizes she isn't. I suspect that since she drinks an ensure or makes a smoothie or tries liquids only for a day that she is trying hard. She knows she slips up (and I think it happens a lot more than she admits) but I think she believes she is truly trying.
I think she would temporarily improve if she got a tube (and she doesn't need a permanent one). It would give her something to show off and tell people how sick she is. It would probably get her out of her apartment more. The problem is that it wouldn't fix the real problem. She is seeking attention and real relationships with people. She is hoping that people will care about her if they could see she was truly sick (I think she did get positive attention for being sick when she was little). However, in the real world people aren't really going to care about her tube. They will politely listen at first but then get tired of hearing about it. That is when the trouble will really start - she will likely try to escalate the medical problems thinking that if she appeared sicker then people would actually care.
While she tends to be my favorite cow - I think its because she is one of the few who I think really could make a positive change in her life. She has taken some of the criticism here and tried to change - she has stopped the frequent ER visits and knows not to rush there for certain issues. She talks about doctors and meds all the time but I think the only real help she has actually gotten recently is her weekly therapy appointment (and that therapist is doing her no favors and lets her go on and on about the ED - which is likely caused by the same issue that causes her to seek out physical diagnoses). She doesn't seem to have a primary care doctor she sees anymore, she doesn't see a GI locally anymore. She only seems to see her therapist and the Temple specialist (and the last visit to temple was solely for the research study and not for the specialist)
I think Dani and Autumn both suffer from severe mental illnesses - the kind that wear you down and make it hard to get out of bed in the morning. They are searching for a physical illness to better explain to the people around them why they feel like crap. The difference is that Autumn seems to be making a conscious decision to do so whereas I think Dani really does truly believe that she is sick.
There is nothing wrong with having a mental illness and getting the proper treatment combo (meds/therapy) for it. Its not as "glamorous" (aka much more stigma) as a physical ailment but I would respect half of these people so much more if they would admit that the problem is mostly psychological. If they have all this access to specialists then surely they should have access to proper mental health support.
No. 420059
File: 1510287667262.jpeg (203.17 KB, 730x721, 34229143-E8C9-4C63-8D69-9B2D0F…)
>>420047It’s 100% BS, she is lying through her teeth.
No. 420068
File: 1510288600052.jpeg (139.09 KB, 640x754, 3A58E5C3-1C0D-41BD-805B-3ACDB0…)
>>420059Also, there’s a next to zero chance she’d have that rare and severe of a disease and be undiagnosed, although that’s literally the absolute munchie dream
No. 420078
>>420013Right but she learned her lesson when she self tubed and went to her fucking Drs appointment with it in!
Self tubing would be hidden this time and if she does certain things with a self tubed NG,and she goes downhill her Drs would see the numbers and think she is sick, not that she is placing an NG at home to purge.
But I guess the good thing is NG tubes are extremely hard to purge through except for air.
No. 420090
>>420078While Dani has a history of ED, I don't think she is looking for a feeding tube in order to purge through it. She wants the feeding tube because it screams "Look at me! I am sick!". I think she would be perfectly satisfied with an NG tube - for a while (until she realizes it won't give her the attention she is looking for in which case she will likely escalate to try to look sicker hoping that if she is sicker she will get the attention - when in fact its probably her obsession with being sick that is driving many people away. And if she wants to try to get that attention from the OTT spoonie community she will need a thousand more toys to get enough spoonie points to be recognized).
She won't make the mistake of self-tubing in front of a doctor. And I am sure when she sees the doctor she will exaggerate her symptoms and tell him she is following all the recommendations. Her labs and weight will likely not match her self report of her severe symptoms and therefore the doctor will likely not be alarmed (or believe her symptoms are as severe as she reports - especially its obvious that she is angling for a tube).
The problem for Dani is that she isn't really that great at manipulating doctors. Its easy for them to just ignore her or pass her off to another doctor without worrying that she is going to cause a big problem. She doesn't have the charming personality or resources that will allow her to sweet talk her way or doctor shop until she can get what she wants. Her voice is irritating to listen to (likely due to the reflux and vomiting). The piercings, greasy hair, bad mismatched extensions, bad hair dye jobs, long fake nails (there is just something about hers that seems trashy not classy), child-like accessories (hello kitty necklace) - its just not a look that I can see many doctors being drawn to. Its not that she is ugly (in fact there are some older pictures where she looks pretty darn good and its not that far off from her current look) and if thats your style, fine. Unfortunately, the way you present yourself does make a difference in how people view you and treat you. If she had a ton of money, looks wouldn't matter so much - but she is trying to do this all on very little funds.
No. 420107
>>420021I agree and disagree.
Dani has mental illness she is bipolar and used to frequently have some rough manic episodes. She admitted to inducing some episodes in treatment long time ago.
One of her pages had (or maybe still does have) she suffers from a lot of mental disorders.
She could get pretty mean during mania..and I really think that's the main issue when it comes down to her over all grammar on posts, the sudden mood changes in posting, why she has rude replies and won't take any advise..she recognizes her mental illnesses, takes meds, therapy etc. But she stops her meds a lot.
I know her GERD is real and it is probably just as bad as she makes it seem. It's common in premature births, add in drug and medication use, poor diet, and her binging and purging I'm sure she is really hurting with that.
I think her symptoms for gerd scare her, specially when manic, and starts freaking out.
Once she comes down that topic seems to die down for a while. (Like passing out all the time suddenly stopping..like how she uses her ED and gp back and forth..she drops one thing for another til bored or gets caught)
Like her boyfriend taking her to another er because she was in so so much pain and dying but he couldn't give her the car til morning (something like that)
That morning she had chilled down and didn't go and tried to hide it until she got really annoyed with everyone asking how it went.
Her whole life has been this way in many different ways.
The gerd symptoms that scare her without doubt explain why she feels like something is really wrong..so the way I see it is it's both..she wants attention. She wants some one to support her she wants some one to comfort her and she doesn't have it.
Once any childhood issues and mental illness improved she dove deep into ED world. When that died down she jumped to physical and still goes back and forth.
I think she knows her physical illnesses are not bad and feels like no one will care if she's not bad. And jumps on the ED train for a while and back to physical.
I think she knows her motility is totally manageable and will improve or go away, but at the same time is embarrassed all she really has is acid so shes veen trying to induce GP (just like her manic episodes, her ulcers, her throat stretched, her acid, etc) it's a huge cycle and pattern.
Right now her inducing worked in her favor, and as much as she obsesses over medical all day every day, and initially knowing she made her stomach a little delayed, she mimics what she sees every where online and having a little learning disability and mental instability some one else's symptoms become her symptoms and now thinks she has GP and the knowledge she has of inducing that delay gets pushed aside until it catches up to her with her Drs.
I think she knows her intestines are fine but says they hurt her for attention, she knows her body will digest soft/ liquids normally but claims otherwise for attention. But her Drs have the facts they know she shouldn't have a problem with liquid and her intestines are fine.
If she keeps pushing them saying I can't I can't I can't they will either do test or reassure her she's ok. If she keeps pushing that's when they will get pysch involved to see if she's just scared from symptoms, faking them, being a munchie etc.
Honestly I want them to catch her because she needs better help. It's not all in her head and made up. Some of it is real with what she feels are things no one will take seriously like having gerd..despite it being pretty severe. And some of it is basically a powerful hope induced illnesses will stay permanently (or so she hopes currently. This one is the worst to happen..the effects are devastating) or the induced illness will happen just right to get what she's wanting And then stop trying to induce it And avoid future follow ups, And some of it is faked for attention (breaking her bones, passing out all the time, burning arm with no memory," having a limp" (long time ago she posted a video of her walking to send to service dog people) having a boyfriend, vitamins used in pill porn, photos etc)
She could have a life. And I hope she comes back to reality before she's in her 60s and realizes she wasted her life for no reason other than attention and wanting someone to care.
The best way to get someone to care is to care about them and not desperately cling to illness for negative attention.
No. 420118
>>420107This! Much more in line with what I was thinking than I was able to explain in the previous post. I think you have hit it spot on.
I fully believe that her GERD is real and very severe (given her birth history and the current state of her voice). It probably doesn't help that it is a real condition that can cause real pain/discomfort but if you mention it to your average person they are going to blow it off as just a little reflux/heartburn. Hers is clearly at the more extreme end of the spectrum. I am surprised she hasn't had a Nissen fundoplication (In a recent continuing ed course I took we were told its a lot less common these days but I think that was more in reference to young kids who often had the procedure done at the same time as a g-tube placement).
She has mentioned bipolar before and it does seem to explain a lot of her weird behavior and I can see it being the cause for her relationship breakdowns over the years. Its not uncommon for people with bipolar to stop taking their meds every once in a while.
I don't follow her private IG but based on her videos she has stopped talking about the vomiting and has been hyperfocused on the dehydration causing headaches.
The whole punching the wall thing a few months back could likely have been a combo of mania and attention seeking. She is the perfect storm of inducing and mimicking some symptoms for attention and then adapting them as her own.
She needs to get her mental state under better control. And step outside her own little bubble. Right now her life is completely focused on herself. No healthy relationship/friendship is focused solely on one person and she is going to have to show some genuine interest in others if she wants to get that interest back. Its a give and take not a take take take.
Well done anon expressing what I have been suspecting but haven't been able to put into words correctly along with the extra insight you provided.
Dani may be one of my favorite cows but I am also sort of rooting for her.
No. 420190
>>420059Definitely BS. The Kyphoscoliotic type is marked by not only severe hypotonia at birth, but also by a
progressive kyphoscoliosis that is either present at birth or develops within the first year. Plus, severe hypotonia together with marked joint laxity makes for a
VERY floppy kid. You don't miss that. It's possible to miss the correct diagnosis at first, but it will be very clear in a very early stage that something is wrong.
Also, the kyphoscoliotic type can actually be diagnosed with a urine test. So there is NO excuse not to test someone if you think they might have it.
No. 420194
>>420021Good breakdown of Autumn/Dani.
>>I would respect half of these people so much more if they would admit that the problem is mostly psychological.Absolutely. And think of what it would take for someone to admit that they lied about their illness. It takes some serious stones to admit to factitious disorder.
Really, if someone like Autumn would say kind of what you just said about her here:
"I feel SO miserable mentally that I just wanted
something to be able to explain to people how I actually felt inside so I made up symptoms and I lied to my doctors because I felt that being physically ill somehow made it easier to cope with my mental problems." If she would do that and would seek mental help for her factitious disorder, then I would truly have the
utmost respect for her.
No. 420222
>>420107I think you are spot on when it comes to her psychology and the way she pushes certain knowlegde to the side until she cannot ignore it anymore. She seems to know what she is doing but not fully realizing it, in some way.
But I have to say, if GERD is her main problem, any nasal tube will only make things worse. I had an NG tube for a while after surgery and it made my esophagus feel like it was on fire. I've had esophagitis, but the pain and burning from the NG was worse than that. I hope she and/or her doctors will realize that before they put in a tube. I know it'll probably not be the same for every patient, but an increase of acid reflux is a known problem with nasal tubes. So chances are she'll be (even more) miserable.
(Although I do believe she has GERD, couldn't the state of her voice point to self-incuced vomiting as well? Does she purge, or has she done so in the past, as far as we know?)
No. 420227
>>420219Kek, that's kind of what I was going for.
We could use it for a quick assessment of how munchie someone is.
Although, maybe we should also make a Munchie-scale, so we can assess first how likely it is that someone actually IS munchie (a lot of actually sick people would score high on 'spoonie points' as well). And after that we can calculate their spoonie points. When you combine these two numbers, you can first see how likely it is that someone is actually a munchie, and the second number will in a way show how "effective" someone is at being one.
No. 420231
>>420222I don't get why they don't put her on omeprazole (prilosec, zegerid, losec…)
Ideally you don't stay on it long term (there is an increase in symptoms when coming off it that needs to be managed with OTC antacids).
I know she is OTT'ing it but literally why all this GI doctors etc. it can literally be managed by PCP, how is she even getting referred to these doctors? Can you just see any doctor you like in the US?
No. 420238
>>420232Pill porn. Especially padded out with supplements.
Psych history before their physical "illness" that they deny or hide.
Gofuckme.
No. 420294
>>420231I believe she is on a PPI or some other type of reflux med. I wouldn't be surprised if she isn't the most consistent about taking it, which probably doesn't help. She also seems to spend a lot of time lying down, which is generally not recommend.
I believe her reflux is a lot more severe than the average person's reflux. She is also on other medications that can make it worse.
Most people view reflux as a mild inconvenience and probably don't experience it to the degree that she does so it gets brushed off and her concerns about it aren't validated. I can see how this combined with her mental health issues can be a bad combination.
And yes her voice can also be caused by vomiting. Her vocal cords are likely chronically irritated from a combination of reflux and vomiting.
No. 420314
File: 1510323784537.jpeg (229.85 KB, 750x1198, 12416C76-1235-4052-96F8-13F91F…)
Where in any of her posts is she showing any reactions that fit MCAD!? Her next goal apparently ? she’s going to pretend to react from the tape around her new sooper speshul PICC, I’d be willing to bet money
No. 420350
File: 1510330473486.jpeg (295.49 KB, 749x1072, 66C76AE8-17EA-434D-B44B-12BE78…)
>>420341But her EDS is causing her hernia ???
No. 420352
File: 1510330816707.jpeg (162.23 KB, 750x876, 874055EF-FC82-41FB-B4D9-778816…)
>>420350It’s common no matter what. Blaming it on her UNDIAGNOSED EDS is bullshit
No. 420371
File: 1510332652183.jpeg (121.15 KB, 750x385, C7878B33-8BA7-48E1-9418-239129…)
Also, in her post where she claims Chronic Lyme (kek), she says “growing list of conditions”. This doesn’t typically happen, especially with the ones she’s claiming, unless someone is faking them or adding things on willy nilly. Most of the things she is claiming are congenital and, sure, may get more symptomatic but they don’t steadily appear (or get diagnosed) like this.
If you have a good doctor who knows how illnesses interact, any patient with the potential of EDS would also get cardio, autonomic, and immune (autoimmune, immunodeficiency, and allergy) – among other things – workup referrals right then and there OR the diagnosing doctor would contact the primary to do it.
As for Lyme, you have to have been bitten by a tick, and symptoms usually appear within the first few weeks. She never said she was bitten?!
But she was claiming MS and ALS in the tags way before any of this other stuff (on a picture where she made a list of all of her symptoms that mysteriously matched every EDS diagnostic criteria symptom to the “T”), which require extensive testing that she didn’t have, so it’s apparent she’s willing to claim this without proof.
There are so many more things that what the internet can reveal about these conditions that the munchies wouldn’t know about because they’re not experiencing it or twisting the arms of doctors who don’t know shit about these specific things and it’s so damn obvious…
No. 420382
File: 1510333318682.jpeg (235.99 KB, 750x1085, FDA45DD6-6F91-4C21-826D-4085FF…)
And the mysterious follower strikes again!!!! They’re Calling you out for the second time autumn!
No. 420425
>>420371How can one be "just beginning" a chronic illness journey? Chronic literally means you've had the condition a long time.
>>420359Go back to Tumblr
No. 420429
File: 1510336287713.png (532.3 KB, 586x689, Screen Shot 2017-11-10 at 17.4…)
Gorgeous_Gatorade_Princess admits a little problem. This might account for her POTS symptoms. Not sure why she insisted on a GES though, because this explains her gastric issues.
No. 420478
>>420474She described herself as a lesbian transwoman. Unless I'm getting something wrong, that means DMAB. She's also using female pronouns, which a MtF would but a FtM probably wouldn't.
Of course, she's an epic social justice cow so hey…
Further fun things from her introduction:
> At heart, I'm an inventor, but I've always wanted to help people with my creations. I believe strongly in cross disciplinary collaboration.She sure did invent a lot of health conditions for herself.
No. 420493
File: 1510340334064.jpg (235.98 KB, 1189x1447, FullSizeRender 8.jpg)
Autumn is bullshitting so transparently that people aren't even calling her out subtly.
If you were an adult and you had a bleeding disorder, you would know which type.
No. 420494
Mystery solved, see pic attached.
Surgical andropause is a fantastic term never ever used in medicine, but basically, it means that having your balls chopped off had the requisite result (lack of male hormones). "Living" with male andropause IS WHAT SHE FUCKING WANTED - it's the result of an elective surgery to give her the hormonal conformation that she desired. And now she has he gall to not only rephrase this as menopause (a far, far more severe condition due to the involvement of estrogen in the body's calcium metabolism), but also say she 'lives with' this oh so terrible condition THAT SHE HERSELF GOT DOCTORS TO INFLICT ON HER.
Jesus.
One of my best friends from school had Ewing's sarcoma in her hip. She did not lose her leg, but she had to undergo radiation that rendered her menopausal at the age of 16. It messed up her body and her life and her mental state quite a bit (she's ok now, but it was a long road). And this little Munchie shit goes and appropriates the actual health issues of women that she by definition cannot possibly have (a biological male, which is what she'll forever be, can never have menopause!!!)? The entitlement is disgusting. She loves playing the social justice dweeb, but she keeps appropriating women's pain and suffering.
Oh also? If she really had as much talent for learning new programming languages as she claims, she wouldn't need to work at PetSmart, she could just get freelance coding gigs and make a mint. But I guess it's not real work if you can't prance around showing off your IV line and fielding questions about how sick you are.
No. 420496
Found her(autumn's) other social media if someone's interrested
https://living-with-autumn.tumblr.com/https://www.facebook.com/autumnjade.schuttFacebook says she's non binary, so not MTF
No. 420497
File: 1510340363507.jpg (194.81 KB, 1188x1367, FullSizeRender 9.jpg)
Also, kek
No. 420509
File: 1510340666584.png (360.7 KB, 2048x1333, IMG_0457.PNG)
Oops forgot to attach pic earlier to
>>420494 No. 420511
File: 1510340738240.png (144.08 KB, 1034x1008, IMG_0458.PNG)
"You doctors think you know everything! You don't know shit! My friend who has EDS totally knows more than you with your years of med school, internship, residency and enough med school debt to bankrupt a smaller country!"
No. 420512
>>420509Thanks for this, clears up a bunch of stuff!
It's stupid putting "Surgical andropause" there. It's like saying you "live with laser enhanced vision" or something else you had COMPLETELY WILFULLY DONE, nay, WANTED.
Autumn needs her own thread, badly. She's been tipped on Instagram but she ain't stopping.
No. 420554
File: 1510345001089.jpeg (190.43 KB, 750x1043, 8545ADAC-E0CC-41C9-BDB6-B7B36B…)
Well someone else calling her out on how she found a doctor to place a PICC with vWD.. of course no answer. And she deleted all the other comments calling her out too
No. 420561
>>420552a lot of anorexics have gastroparesis but that goes away over time and as more food is introduced. maybe it's that?
true gastroparesis is not common.
No. 420562
File: 1510345315537.jpeg (56.86 KB, 750x299, 7B6F66B7-33CC-4457-8802-550BF3…)
She’s MTF, she had her balls chopped off according to her.
No. 420565
>>420429>>420479>>420487She instead on having a GES in hope she would have a delay and can then pretend she just never had bulimia. If she had GP she would be throwing up foods..so it's like she thinks she's smooth.."with gp people will finally feel bad for me when I throw up and it's ok for me to throw up whenever."
Basically it's a way for her to enable her bulimia and not have to worry about people thinking she is bulimic.
It's a lot more common than it should be..pretty much all her special illnesses are caused from her ed..and she is young and not really smart enough to manipulate adults with degrees as well as others.
No. 420617
>>420604The menopause (whilst it has many symptoms that come alongside this) is defined as when menstruation ceases for 12 consecutive months for no other medical reason other than aging.
If you've never had periods you can't go through the menopause. Additionally if you biologically could never have periods you are completely not impacted by menopause. No mood swings, essentially hormonal withdrawal etc. Literally not a medical thing other than she had surgery, the impact of that surgery is 100% quality of life/ psychological not a health issue NOR the same as the menopause. A direct result of the surgery is also larger breasts and weight gain. It may also lead to hot flashes but again, this in no way = menopause, it is just a shared symptom of orchidectomy and menopause.
No. 420679
>>420659THANK YOU.
Next thing you know he'll be tagging amenorrhea as well!
No. 420688
File: 1510375505890.jpeg (231.3 KB, 750x970, CF4D4EA0-A651-47E0-82D1-4A9CBA…)
Already showing off her tubez. Arm up and connected
No. 420778
>>420241Also when they present with more than one very rare disease. I mean we've seen cows with up to what…4-5 rare illnesses. Like things that would make you rarer than a spotted unicorn riding a unicycle while playing the violin.
Also, redundant posting. POTS and dysautonomia, for example, trying to bulk up their list of afflictions to appear more sick and speshul to the untrained eye.
No. 420873
>>420870No worries. It is a bit confusing since both have claimed GP that tests show they do not have. Information here was posted about both that seem to indicate they have an eating disorder. And Autumn is proudly showing off her new tubes. GGP doesn't have any tubes but would love one.
>>420688Those more familiar with PICCs - I assume its only common to thread the infusion line down your sleeve and out the front of your shirt if you are trying to be the world's best munchie.
(She appears to be getting the saline infusion at home right now - but I am waiting for her to start doing them out in public even though I assume that it is something that doesn't take all day and could easily be done in the privacy of your own home - but then wouldn't allow any extra pity points)
No. 420890
>>420809As someone with lupus, this is frustrating with the rashes. Systemic rashes are a symptom of lupus.
I currently have a candida all over my legs. It's not lupus, but from fungus from gardening and sweating/neglected hygiene. I still had to see my doctor to make sure it wasn't my lupus flaring up, because rashes are a sign of actual flare in the illness.
No. 420894
>>420465Which has been mentioned but…
This. Girl. Doesn’t. Even. Have. Mild. Scoliosis. Or. Kyphosis.
No. 420895
>>420894i was thinking the same
Also i would've been progressive from birth
No. 420897
>>420511>>420513>>420809These things actually do pop up in true cases of EDS some, despite not being typical symptoms. The dystonia because of the strain on muscles from no joint stability and the pseudoseizures because of high adrenaline levels. I’ll try to find the research articles outlining a few of the less common things to prove the point.
Regardless, she’s full of shit.
No. 420902
>>420899I feel like her response to a call out would be that anorexia and anorexia nervosa are different.
Though anorexia (loss of appetite) isn't generally diagnosed given it is explained by other medical issues.
No. 420907
File: 1510406824337.jpeg (Spoiler Image,78.69 KB, 750x267, EFA41DEC-C852-4777-9143-584F0E…)
>>420902It’s paired with her mental health issues though, not the physical ones.
The thing is, she could get SO MUCH ATTENTION with anorexia, but instead she’s wasting our precious resource.
No. 420912
>>420907I guess if she lost enough weight to go to treatment and acted how she does she'd get a personality disoder diagnosis and I guess she realises that? I don't know.
I think in the US you don't have to be that physically ill to go to treatment though? Your insurance just has to pay?
In the UK you have to be dying.
To be honest I think the cost is probably the same financially. It is just that she is seeing specialists who then have less space for actually ill patients.
All the US munchies and all the UK/ireland munchies just need to go to their own special treatment centres. I don't know if the UK even has anywhere for adults with somatising disoders.
No. 420980
>>420328>>420460>>420476>>420509Idgaf about what they want to identify as personally. My question was purely related to the menopause tag in their bio… and it seems my query was relevant.
How stupid have you got to be to equate anything that isn’t the menopause, to the menopause? It’s been used in defence at murder trials, it can be that serious.
/sage for noncon
No. 421036
File: 1510420804559.jpeg (365.92 KB, 750x1054, 03B9B11F-474A-45E5-9C91-F1DB66…)
We already established she’s full of shit, but…
1) no, probably no one else on insta has this type as it’s only been reported in 60 people worldwide and you typically lose most use of limbs by the age of 20 (I doubt you’d bet IGing)
2) this would be your most likely type, but as you have zero affected family members and hEDS rarely spontaneously mutates, NO, just no
3) all of the main types, spare vEDS, affect larger joints. hEDS affects small and large. cEDS affects primarily large. vEDS affects primarily small. The rarer types, spare a few, tend to affect both.
4) recessive doesn’t mean everyone else in your family doesn’t have it, idiot, it means that it’s passed down differently and less frequently. learn basic biology (how tf did you graduate high school?!)
(she’s also pushing for a PICC but doesn’t want a port)
No. 421077
>>421065The majority of our EDS cows probably have (near-)benign joint hypermobility (which is common in like 75%+ of the general population?!),
maybe with some pain, and a chronic case of ineedasspatitis — a terrible, horrible disease that’s often affects others more than the carrier!
No. 421098
File: 1510426115295.jpeg (268.9 KB, 750x1202, 1594212C-B1F4-4487-A4D3-F1660D…)
I found the idiot that posted the screenshot and forgot to cover her photo
@dontmesswithmorgs
No. 421218
>>421180Kek yeah sure. You brought yourself into this with by being a speshul spoonie yourself and got easily called out by not cropping your own profile out of screen shots.
If someone feels the need to say how much better they are than their spoonie buddies, they're probably just as bad.
No. 421231
>>421204>>421218Not Morgan and not a spoonie. I didn't actually even see the screenshots with her picture in them.
Just a regular user of the board - who often calls out people who are clearly spoonies that think they are superior.
No. 421369
File: 1510449553122.png (1.2 MB, 1536x2048, DCE4EF25-2A8E-43C7-B45C-E4091A…)
Can’t eat or drink anything, has to have a gj tube and port for survival, super serious pots. Posts picture holding a beer. Sure, you’re reaaalllly sick. (Alcohol and pots do not mix at all, it’s a good way to pass out very quickly)
No. 421411
File: 1510454006223.jpg (702.4 KB, 2172x3862, 20171111_202122.jpg)
The center picture was posted first. The picture the caption went to was just solid black.
Then she posts more of course..im not sure how long apart the victim and attention cry was from the next posts only that it was the same day..all posted 2 days ago.
Also can someone please explain why she has the mental illnesses awareness photo she's using to advertise her selling stuff?
No. 421431
>>421369Agreed but it could also be the pup is
Too big, squirmy heavy,for her to pick up and hold it? Specially with any type of tubing or whatever issues.
So she may be holding the beer for him for the picture since he picked up the dog for it and couldn't hold the beer?
Or she was just drinking it.
So..one of my nurses told me about another patient (obviously no names no details all of the confidentiality things)
Who had a trach for severe aspiration issues and who obviously is NPO long term and fed through a G tube. This guy though..omg. he would still drink and eat..more drink..rn had caught him having coffee and beer orally!
The point to this is, we all have one thing in common, we are human beings.
If it is her beer it's stupid to do with everything she keeps claiming and if what she claims is somewhat true she will learn why she should not have booze.
She's being careless and just a idiot if it is hers and I hope she doesn't hurt herself (though we know she would just love that)
No. 421442
File: 1510456689876.jpg (806.76 KB, 1065x1894, 20171111_144710.jpg)
I don't know if anyone remembers Liana Judd, but I went through my block list recently and found out she's still an attention-seeking scumbag.
Currently:
>~recovery warrior~
>claims to have BPD, PTSD and an eating disorder
>posts are as histrionic and crazy as ever
>has a breakdown and goes to hospital several times a week
>already planning to travel interstate to treat her super serious bulimia she decided she had a week ago
>3-5 posts a day of insane rambling
-still fat
No. 421458
>>421431I don't follow Aubrey's story, so I don't know the full details of her tube.
Although her case is likely very different from the trach patient who is supposed to be npo eating (I am an slp who has spent many years working with dysphagia patients). It is fairly common for someone who is NPO or on restricted consistencies due to dysphagia to not follow the recommendations. However, there is typically some sort of cognitive impairment involved so they don't fully understand the risks (aspiration leading to possible aspiration pneumonia which can result in death). Additionally, these people often don't feel any pain while eating or have had a sudden event which caused eating by mouth to be dangerous (side note - trachs do not decrease/prevent the risk of aspiration). Its different compared to someone who gets a tube because they claim that eating causes so much pain.
That being said we are all human and a lot of social interactions are centered around eating. It can be very socially isolating to be NPO. So I understand a person slipping up from time to time - although like many of these munchies, I assume there is a lot more "slipping up" when they aren't in front of the camera because its easy to only be sick when its convenient when you aren't actually as sick as you claim.
No. 421462
>>421411Sadly, the person who mentioned knowing her in treatment was just giving a logical/more informed background regarding why Dani is the way she is. There is something about Dani that is different from a lot of the other munchies. I think it is a little clearer that she clearly suffers from some mental health issues and that is the reason she is constantly seeking medical diagnoses. That person also mentioned some possible mild cognitive impairment, which always makes Dani really defensive (Dani reads this thread). That person may or may not even be following her personal account since I don't think they actually provided any new info). It won't last long anyway - she will just create a new IG or youtube (which is why she has 3-4 accounts on each). If she truly wanted to stop being posted on here, she would either try to focus on improving her mental health, the real root of her problems, or stop accepting strangers.
>>421454Despite a million people telling her fruit isn't good for GP, she hasn't picked up on that. I think she thinks because its frozen it is fine.
She is claiming the shake is for a migraine because she has been claiming that the migraines are due to her not being able to get enough nutrition. Her newest reason she is angling for a tube is that she just simply can't consume enough calories and the lack of nutrients causes migraines and dizziness. I think if she really looked at what she is eating she would discover that there are plenty of ways she could get more calories in if she tried - like prioritizing what she drank to make sure she got calories (we have seen pictures of no-calorie drinks like the ICE drinks, which have no nutritional value and I think I have seen large containers of over-processed fruit punch on her table full of liquids).
No. 421473
>>421472I wasn't meaning to wk - was actually trying to do the opposite given the prior person brought up the point that there are people with tubes who eat when not recommended and I was trying to point out that was likely a very different situation that aubrey.
Having worked with many people who do eat when they aren't supposed to I understand the reasons why it happens - but I don't think that situation applies to aubrey who is clearly a munchie. If that is her beer, there are several reasons why she shouldn't be drinking it based on her claims.
I suspect, like many munchies, that she probably indulges in those pleasures much more that she shows on social media. I suspect half these munchies are able to do a lot of things they claim not to be able to do - they just don't post it on social media. If she "slipped up" its more that she posted a picture exposing her lies and not so much that she consumed something she shouldn't have (which I suspect happens more often than she admits online)
No. 421481
>>421473No worries just a misunderstanding then. Aubrey’s definitely eating way more than she lets on, because she’s shown her tube feed rate a few times and it’s way too low to get a sustainable amount of calories in even if she ran it 24/7. At the rate she’s at, she could only get a maximum of 840 ml a day, if she never unhooked her tube (no showering, no stopping to add more in or take meds). Also, she’s got the small bag, so she can only run a maximum of 500 ml overnight (those bags are usually only for children and people who only need supplemental feeding). She’s said she uses a 1.5 formula, which, running 24/7, would max her out at 1,260 calories a day. And since it’s unrealistic to tube feed a full 24 hours a day, she’s getting even less calories, which is about half what someone her age and activity level should be getting. So there’s no way she’s only tube feeding, it’s mathematically and biologically impossible.
No. 421579
File: 1510478190634.png (789.37 KB, 1440x2560, Screenshot_2017-11-12-20-12-37…)
>>408576This account seems to entirely be hospital admissions for vomiting and low potassium, has a shaved head and went to a child's party in a "super-tubie" shirt. Talks about vomiting for hours on end on every second or third post. Don't think it's proper mbi but something's up here.
No. 421643
>>421579I really don't think she is a munchie. OTT yes, but I think that would depend how things go once she has her NJ and is healed. If it carries on like this then definitely OTT but it could be that at the moment her life genuinely is just hospital and puking. Most people who comment on her facebook (which is linked to her IG) are real life family and friends (based on location/ surnames).
Additionally whilst her face is puffy her legs are incredibly thin and arms not much better. (Can't screen cap right now, apologies I know this is an image board!)
No. 421655
>>421643(I didn't look into it so cannot comment on her specifically, but:) I genuinely think it can be hard to distinguish 'actually sick, but oversharing and making weird hospital selfies' from 'garden-variety-OTT-spoonie-with-munchie-tendencies' nowadays.
Sure, the ones that are munchie AF one can always recognize as such, but the problem is that people who are actually sick and looking for some support can get sucked into the OTT side of the spoonie community real quick. After a while, they might think it is normal to make a seperate account to 'document their chronic illness journey', post pill porn, hospital selfies or refer to themselves as 'spoonie warrior' or 'tubie'. Especially the young ones who also do not have 'normal' people with a chronic illness or disability in their lives to show them that you don't have to make everything about your condition and that you can, in fact, go on with your life even if you have to make some adaptations to do so. We've even had some farmers who told us they used to have a so called 'spoonie account' but removed it once they saw the light.
I know I am kind of rambling, but I really think the very fact that it is so hard to make the distinction sometimes shows how much damage that part of the spoonie community is doing on social media. The very fact that normal people who happen to have a health problem now may think it is normal to show off hospital bracelets and doctor shop 'till you drop and find 'answers' is truly horrifying. If I had a kid that had even the most minor of health problems, I'd be truly worried.
No. 421703
File: 1510505296075.png (493.22 KB, 640x1136, IMG_1739.PNG)
Found this girl in a known cow's followers. Has the obvious EDS/POTS and angling for MCAS. Tags both hEDS and cEDS which … well, can't happen. Also this….
No. 421704
File: 1510505347938.png (142.51 KB, 640x1136, IMG_1740.PNG)
>>421703But before that last picture she'd already started tagging MS! Ohh munchies…
No. 421724
File: 1510507470040.png (2.21 MB, 1440x2560, Screenshot_20171112-090653.png)
Kek!
No. 421818
>>421802Seems like yet another doctor who normally doesn't place this type of tube but went ahead anyway. WHY?
As to the girl (don't remember her name): I saw a few videos of her a while ago. Although I cannot remember specifics, I did not get strong munchie vibes from her. She seems to have all the 'popular' diagnoses and interventions, but that shouldn't make someone a potential munchie (although sadly, on Instagram it does). My tentative opinion is that she falls more in this category
>>421655. Which is sad in a way, because she could spiral into full munchiedom if she doesn't watch herself, even if she started out just wanting to share some of her experiences.
But, as I said: I haven't seen too much from her.
No. 421963
>>416072she needs to be an adult. at her age
budgeting is common sense. I think most grade school kids are better at budgets than she seems to be….but she is very bipolar and it is pretty common for people who suffer with bipolar to have erratic spending/spending/shopping sprees.
But her so called therapist would help her with it and set up a reasonable and simple way for Dani to keep track of her monthly expenses, even week by week if easier for Dani.
I don't think she has a boyfriend. There is one old picture of them together and that is it and they have been together for a long time..she does have a brother…makes me wonder..(not that she is dating her brother but using a bad picture of him to say this is my boyfriend) there would be a lot more mention of BF on her family pages..and the whole being sick but never brings her this car or anything. not a single picture anywhere but the one on the couch. and what happened to those rings she had to pawn? She said that she was heartbroken because "the boy" got them for her
(like promise rings) but she need the money to pay for the car before they repo it.."boy" did what to help that? "boy" said he would buy back her rings. so where are the rings? pawn shop or sold..doesn't add up because her father ended up doing the car and agreed dani would pay him monthly what she can..so the "boy" could have got the rings back since theyd have the money with a lower payment to the father. I question if the therapist is real..and if it is she has had a pretty bad dr for the last several years..Dani is the only cow I feel bad for. She could do so much in her life for herself and others..i fear for when she finally breaks out of this shit and realizes what she did with her life and how much it hurt others and how much she hurt herself for no gain
No. 422218
File: 1510531023530.jpg (254.97 KB, 750x1070, IMG_9650.jpg)
Someone seems pissed
No. 422231
>>4222181. who the fuck is this?
2. no conditions they tag involve "remission"
No. 422235
>>422231She has been mentioned here a few times, a biit OTT but mostly aggressive
Can't remember all her old usernames, she changes quite often
No. 422397
>>411248I also have hEDS, and Lipedema as well, which is a common comorbidity (supposedly, the hyperlaxity and thus hyperpermeability of tissues, including blood and lymphatic vessels, can contribute to weight gain. They aren't sure if it's chicken or egg with EDS/Hypermobility/Lipedema yet though, research is underway to try and nail that one down). The Marfanoid habitus is not "a large majority" but it does happen more often in EDS than in the general population. It's more common in cEDS, though. I don't have a Marfanoid body type or even abnormal looking hands, and yet I have both of the Marfan's "signs" that define Marfanoid arachnodactyly. Further, the worst thing about gastroparesis is that it can be unpredictable and intermittent. I only have an "episode" once or twice a week, thankfully, because now that I take thyroid meds (officially for depression) my digestive tract moves along more normally.
(medfagging) No. 422586
File: 1510546390094.png (988.43 KB, 1440x2560, Screenshot_20171112-201141.png)
This is littlemisswheeler other account. Caption to follow
No. 422588
File: 1510546521121.png (473.25 KB, 1440x2560, Screenshot_20171112-201158.png)
She is "fucking awesome" top kek. This new whole I have mast cell and am going to post my red face (which I don't doubt she just pinched her cheeks) in ever single story picture to prove to everyone I'm soooper speshul
No. 422750
>>422602She's on disability thanks to the TN and chronic migraine and maybe RA. She claimed several times that all three of them are under control and as soon as people want her to go to work she ends up needing a pain shot. She even considers taking makeup classes again, so she can't be that sick?
What really irks me about her "mast cell story" is that she is trying really hard to stay sick. Instead of refusing Toradol shots like she's supposed to she happily receives them and afterwards she runs to her allergist. And instead of making sure that her current medication, makeup or diet isn't causing it, she needs test after test.
Why is she seeing a hematologist?
No. 422762
>>422713Edited:
I think the Jaquie thread has been around a little too long to just merge it back, so unless admin says otherwise it will stay separate, obviously Kelly's thread also will stay separate.
As for the Autumn thread I believe it would be best to bring back into this thread, it's a newer thread and has no reason to be separated.
(Sorry to anyone who saw my last post)
No. 422767
>>422762Thank you based Farmhand. Agreed in full.
While I am addressing you, I have a question [Sorry in advance for the autism]. You guys have recently labeled some bans as "medfagging"
[example:
>>422397 ], but I think that is a misnomer for this particular offense. 'Medfagging' is the term we've been using for when medical professionals explain clinical things in here. It can be helpful if concise and relevant to the discussion; i.e., not descending into a drawn-out string of shop-talk posts between clinicians.
This is different to when illfags come in here to post about how they are ~*actually sick*~ and blog excessively about their own illnesses/how much better they are than the other spoonies. How about we call this offense 'spoonfagging'?
No. 422774
>>422767For us Medfagging is when people come into the thread writing walls of text trying to get attention through their "knowledge in the medical field", it draws a close line to blogging. I can bring it up with other farmhands to discuss terms and meanings, but to be clear that it is still against the rules.
There is a difference between bluntly informing people
>hospitals don't do blood test like that because ectAnd being an attentionwhore
>hey medfag here! -instert 12 paragraph essay going into extreme detail-Sorry if it's caused any confusion, I'll try to clear it up.
No. 422775
>>422767Seconded. I often thought "where's the medfagging in this??"
Also, I think it's a good idea not to have too many seperate spoonie threads. Jaquie is different though. For one thing, she has daily vlogs, which makes it an ever-going shitshow. A lot of people comment on her vlogs and her instagram, which provides interesting milk also sometimes.
Someone like Autumn or Aubrey is milky, but they do not stand apart from the other cows, not
that much. If we start seperate threads for everyone who is discussed here for a little longer than average, we might as well give everyone a seperate thread - which I think no one wants. Also, someone like Autumn might just go private for a while or disappear if she finds she doesn't get the kind of attention she wants from her account, and maybe reappear elsewhere after some time. Jaquie has been around long enough to assume that she's there to stay unless something major would happen that'd change her or habits. And she's some kind of trend-setter, so in the Jaquie thread we also discuss Janiece and other people who are trying to be just like her. Autumn is a follower: she is trying to be like Jaquie and other high-profile munchies, but no one is trying to be like her.
Plus, some people in the Jaquie thread
only follow her, or only occasionally lurk and/or post here (like me). I don't think there are many farmers who only follow Autumn - she's just not interesting enough. Interesting, yes, but not enough to carry her own thread.
Wow. Did I just make a case for how Jaquie is more special than all the other spoonies? I must be sick or something.
No. 422780
>>422774>>For us Medfagging is when people come into the thread writing walls of text trying to get attention through their "knowledge in the medical field"For me too, although I personally also think of it as medfagging if it doesn't cross the line. Someone just explaining (wether it is a patient, a clinician or e.g. a caregiver) how a certain condition/diagnostic process/hospital policy works, I would call medfagging as well. And I do not think of that kind of medfagging as bad. Just as some degree of blogging isn't bad, if it is used in a manner that contributes to understanding of how something works. As we've said before, the only way to know if someone is telling things about their symptoms that don't add up, is by having an understanding of how an illness
normally affects patients.
Also, these
>>411680>>418176>>418288>>421298are not in line with the definition you just gave of medfagging.
No. 422782
>>422780I am not the usual mod in this thread so I might have made a mistake, I will ask another farmhand, they know better than me about those bans. To spare derailing this thread any further can I please ask you to move these type of questions to /meta/?
Sorry for any misinformation and derailing the thread. This is my last reply about this in this thread. I'll ask someone else to answer in /meta/.
No. 422786
>>422768Just read some of the 'reasons for signing'. Sigh. Do they even
know what we discuss here? And WHY? I guess most of them don't. They just read 'cyberbullying of chronicly ill people' and there's an immediate outrage. Which I completely understand and woud be completely against, if that actually was wat we were doing.
No. 422793
>>422789We should start our own petitions:
"Stop Instagram from allowing users to glorify chronic illness, helping other people to lie to their doctors to waste medical recourses and pull young and vulnerable people with a chronic illness into dangerous Munchausen By Internet trend."
Or:
"Make YouTube demonitize Factitious Disorder videos."
"Stop scammers on Patreon who are making money by pretending to be sicker than they actually are."
"Protect our youth from being brainwashed by social media to think being ill and doing nothing with your life makes you brave and strong"
…and a few more.
No. 422825
File: 1510590813705.png (374.94 KB, 631x737, Screen Shot 2017-11-13 at 16.3…)
Found Chloe Leanne's Twitter. And her OTHER twitter. Shall scour for milk when I'm feeling well enough.
In the meantime, have a taster (she's fishing for attention)
No. 422883
>>422875Just… no.
Go justify being fat elsewhere. This thread isn't for that.
No. 423336
File: 1510625582986.png (483.8 KB, 732x745, Screen Shot 2017-11-14 at 02.0…)
Browsing Chloe Leanne's twitter is so boring. It's just her attacking people who post about the importance of vaccines, and sending them multiple pictures of her ana-chan languid hospital bed poses. She's wearing crop tops in a lot of them so you can see her toobs. Again, no point if you can't show them off right?
No. 423351
>>423336I would fuckin love to know what the staff who had to deal with her bed blocking ana chan self thought in private. She's the worst UK munchie. And one of the few who is pure munchie, not OTT. It's all for sick emotional (and now $$$) gain.
I kind of get it when it's the shitty US doctors who give into manipulation by Jaquie and her ilk since they make money off them, but how do gross people like Chloe Leanne and Paige and Chloe Print Lambert DO this? As in why don't staff throw them straight into psych, not saying "tell me what behaviours they use so I can munch it up too", kek. It's so blatant and wasteful. CPL uses A&E for narcissistic supply and Paige fucks with her tube on purpose. The doctors must know this, and anyone who's graduated as a doctor knows Chloe Leanne is spewing shit with her Muh EDS Vaccine! sperging everywhere.
No. 423432
>>423425Not as long as her parents pander to her (and enjoy the money) I guess.
Agree with the anon about the positioning looking like it takes effort. Looks like she's holding herself up with core muscles there.
No. 423483
File: 1510640324035.jpg (1.83 MB, 2896x2896, 20171114_000958.jpg)
>>419947From her last hospital admission mentioned here.
This shows one of the two clot freak outs she has had with IVs.
It's almost like she us trying to will her body into making a clot after the IV is pulled and she's discharged. Hun, it doesn't really work that way.
No. 423515
>>420021>>423492Yup..it is the hospitals policy in the states. You must leave in a wheelchair. It's a liability thing. If you walk out and you get hurt or pass out or whatever, it is the hospitals fault. You leave in a wheel chair and go home..if you trip or fall or whatever it is not the hospitals fault.
If you refuse the chair transfer you usually have to sign papers.
No. 423738
File: 1510678259732.jpeg (249.78 KB, 750x1095, FF06E7A2-E0EE-4972-8E96-1A79B4…)
How the hell do you go from Chronic Lyme (which is not even a real thing) to having MALS and CIPO, like how much shit can you possibly make up!?! You already have a fucking toob, stop while you’re ahead you nut job.
No. 423899
>>423897at least some of them learned to sage
But yea the thread has been more popular since the facebook incident
No. 423903
>>423889Welcome anon! Fellow fb group lurker here. I joined illness fb groups before I knew how crazy those groups can be, then shortly found this board. I'm amazed at how many people from the groups didn't come here to read and just assumed that this board is to harass and insult disabled people. When I first discovered the fb groups I was so excited to be able to connect with other people that share the same life-long illnesses I have. That good feeling ended when it was suggested that my cutaneous mastocytosis is definitely leukemia despite a bone marrow biopsy and I am definitely dying and need a port and toob STAT. These people can be so obsessed with collecting diagnoses and they drag others down with them. I went there looking for help and support and left with a deep, itching feeling that something is seriously off with the "spoonie community".
I switch between laughing at the milk in the groups and deep sadness that these people are hurting themselves and others, this shit gets depressing. But then someone comes along and asks how to get diagnosis that their doctor refuses to give them and the whole cycle starts over.
No. 423960
>>423908id rather an ot thread so attention whores can talk about how better they are than cow because of x, but it will still be a stupid hug box of whining.
stop pointing out how you came here, how youre laffin and how much they annoy you because your sooper special illness is totally legit. you look no better.
No. 424022
>>420241-puts symptoms, features or anecdotes like arachnodactyly or knee pain on their diagnosis list
- has a wheelchair/is getting a wheelchair for POTS or another condition where it is not recommended
-"is this (normal thing) (something serious like cancer or rare like MCAS)"
-Tells anyone who has 1 symptom of a disease that they must have it
-Takes every chance to complain about non-disabled people being ableist
-Talks about their ~super serious medication(s)~ like oxycodone
-One ups everyone who has their condition
-"I'M DYING FROM THIS TOTALLY NON-FATAL ILLNESS"
No. 424109
File: 1510704095856.png (793.33 KB, 750x1334, IMG_3300.PNG)
Has katiwithoutthee been brought up yet?
She's 26, claims cEDS/hEDS despite having whole exome sequencing and definitely not having cEDS, POTS but drinks frequenly and takes meds that will aggravate it, and of course gastroparesis and had to get a tube despite being perfectly capable of eating solids.
Oh and PTSD! She mentions it on posts from 2013 where she got a service dog and never mentions the dog or ptsd again (???) until recently in order to get medical marijuana.
She seemed legitimate at first glance and I appreciated that her idea of advocating wasn't just helping herself. Of course she has a gofuckme but can afford TONS of bottles of liquor, high end cosmetics, Starbucks, hockey games, concert tickets, and photography equipment.
I think it's all a photo op to her.
I have a ton of screenshots but how do I put more than one photo in a post?
No. 424112
File: 1510704383489.png (992.83 KB, 750x1334, IMG_3319.PNG)
No. 424113
File: 1510704468130.png (1.4 MB, 750x1334, IMG_3328.PNG)
I can tell you for a fact there are signs all over that room asking you not to take pictures.
No. 424114
File: 1510704568449.png (1.71 MB, 750x1334, IMG_3303.PNG)
But she'll die without her toobz!
No. 424116
File: 1510704742638.png (892.59 KB, 750x1334, IMG_3310.PNG)
No. 424118
File: 1510704838579.png (956.17 KB, 750x1334, IMG_3305.PNG)
She got a cheek hair with smartdrive! Great for POTS, right?!
No. 424120
File: 1510705072127.png (935.05 KB, 750x1334, IMG_3323.PNG)
It seems like she demanded infusions because she couldn't possibly drink enough water to handle her pots symptoms, yet here she is with a fucking Venti from Starbucks. Somehow she can drink coffee and alcohol but not water?
No. 424131
File: 1510706989814.jpg (431.48 KB, 1277x1657, FullSizeRender 6.jpg)
This service dog's account popped up in my Explore page. I find it hilariously narcissistic/self righteous that its vest is covered in both passive-aggressive DON'T LOOK AT ME stickers, and also one advertising its fucking Instagram account. Oh lordy
No. 424132
File: 1510707063253.jpg (339.15 KB, 1241x1447, FullSizeRender 5.jpg)
Also wow, GGP/UnicornSpoonie has latched onto a new way to get attention. But I thought she needed a walker?? Oh these krazy kids…
No. 424162
>>424149I don't follow her new IG but if I remember correctly - she doesn't actually have a diagnosis of POTS. Its another self-diagnosis. And I thought she was claiming bulimia - guess anorexia is more "glamorous".
Also if she only went .5 miles than she certainly wasn't running for an hour - when she says "off and on" she must primarily mean off because most people can slowly walk .5 miles in much less than an hour. Good for her for trying to get some exercise but if she thinks she seriously got a decent amount of exercise, she is wrong (based on the GGP instagram she would go around Boston with her friends using her rollator and I am sure she traveled farther than .5 miles in an hour). I suspect the whole story is a lie to try to make herself seem like a brave spoonie warrior - but she has not concept of how to make that lie seem believable.