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Autoimmune Disorders and Rare

For non-believers with Autoimmune Disorders and Rare Disorders. Lupus, Raynaud's, Celiac, MS, etc., Ehlers-Danlos Syndrome, Primary Immunodeficiency Disorders, 22q Deletion, etc.

For non-believers with Autoimmune Disorders and Rare Disorders. Lupus, Raynaud's, Celiac, MS, etc., Ehlers-Danlos Syndrome, Primary Immunodeficiency Disorders, 22q Deletion, etc.

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Oldest Posts By TaraMarshall (4) Posts by anyone

Autoimmune Disorders and Rare
Mar 20, 2018Mar 2018

Posted by TaraMarshall
For us zebras and rainbow zebras. What helps, what hurts, and shoulders to cry on in the electronic sense, at least. We're tired, we hurt, and we're allowed to bitch about it!
1 comment
Autoimmune Disorders and Rare
Mar 20, 2018Mar 2018

Posted by sassygirl3869
Nice you started this-I have low immune system since surviving leukemia-in remission for 5 years. Diagnosed with fibromyalgia in my 40s-went into remission for awhile but now have Graft vs Host disease from bone marrow transplant. Limits use of my ...
1 comment
Autoimmune Disorders and Rare
Mar 20, 2018Mar 2018

Posted by KKGator
Thanks for starting this group.
1 comment
Autoimmune Disorders and Rare
Mar 20, 2018Mar 2018

Posted by memorylikeasieve
Hiiiiiii. Any fellow narcoleptics in here?
1 comment
Autoimmune Disorders and Rare
Mar 20, 2018Mar 2018

Posted by Rugglesby
I don't have an auto immune problem myself, but many around me do, mother has lupus, an ex has schrogens, another ex has auto immune hepatitis, I went through transplant with her and a young friend has crohns..
2 comments
Autoimmune Disorders and Rare
Mar 20, 2018Mar 2018

Posted by RobH86
I have ulcerative colitis. It isn't very fun. Much symathy for all members of this group. Stay happy and as healthy as you can
1 comment
Autoimmune Disorders and Rare
Mar 20, 2018Mar 2018

Posted by SallyInStitches
Thank you. Gluten issues. Can't afford the cost of a diagnosis of celiac's even with insurance.
1 comment
Autoimmune Disorders and Rare
Mar 21, 2018Mar 2018

Posted by TaraMarshall
I have a regrettably list of diagnoses. Primary Immunodeficiency Disorders: Total IgA Deficiency and CVID. Autoimmune Disorders: Celiac Disease, Raynaud's Phenomena, and Lupus. Ehlers-Danlos Syndrome, IBS-C, Epilepsy, Autism, Depression, Anxiety, ...
2 comments
Autoimmune Disorders and Rare
Mar 21, 2018Mar 2018

Posted by Liebran
Lupus, Raynauds, Sjogren's syndrome--plus. They are calling it Undifferentiated Connective Disease-symptoms of some of the autoimmune diseases. Nice you started this list.
1 comment
Autoimmune Disorders and Rare
Mar 21, 2018Mar 2018

Posted by JulieBFree
I was diagnosed with Type 1 diabetes shortly after my daughter was born in 2008. I also have low thyroid and arthritis that (thankfully) only flares up once in a while. Thanks for creating this group. :)
1 comment
Autoimmune Disorders and Rare
Mar 21, 2018Mar 2018

Posted by LadyAlyxandrea
Has anyone here heard of or been diagnosed with hidradenitis suppurtiva or HS?
1 comment
Autoimmune Disorders and Rare
Mar 22, 2018Mar 2018

Posted by LadyAlyxandrea
Tomorrow I'm going to ask my specialist about getting a handicap placard. My GP ks I'm exaggerating my need for it. Do you have any suggestions on how to ask for it without coming off as just lazy?
4 comments
Autoimmune Disorders and Rare
Mar 27, 2018Mar 2018

Posted by Cassandra
I fell off my porch yesterday. I have fibromyalgia & diabetes (& others), which I've never received proper medical care for. I get periodic flare ups of inflammation that cause muscle pain and weakness. For the last few weeks, my left ankle has ...
5 comments
Autoimmune Disorders and Rare
Mar 27, 2018Mar 2018

Posted by LadyAlyxandrea
So I've now been diagnosed with essential tremor and Mylonic jerking? Weird
3 comments
Autoimmune Disorders and Rare
Mar 28, 2018Mar 2018

Posted by LadyAlyxandrea
I am just so pissed off with this war on opioids. It drives me nuts. My pain doctor is now being squeezed into getting me off pain meds, and with very little alternative aid. It is not because he wants to either. It's because I'm 27 and have no ...
5 comments
Autoimmune Disorders and Rare
Mar 28, 2018Mar 2018

Posted by RobH86
Sad to hear about one of my favourite Magicians 'Dynamo'. He is very popular over here in the UK and I knew he had Chron's disease, but it didn't seem to affect him until now. I myself have Ulcerative Colitis (similar to Chron's) and have suffered ...
1 comment
Autoimmune Disorders and Rare
Apr 2, 2018Apr 2018

Posted by LadyAlyxandrea
Well today was my last OT session, and my new weighted silverware arrived so yay. Unfortunately still have not heard from the Geneticist about an appointment ugh and my neuro is out for two days so I can't tell him about the medicine reactions.
1 comment
Autoimmune Disorders and Rare
Apr 2, 2018Apr 2018

Posted by Lysistrata
Has anyone here looked into autophagy? I have an AI condition that every medical professional has told me is largely untreatable. I tend to believe almost anything is treatable through diet, but my anti-inflammatory diet doesn't seem to be making...
2 comments
Autoimmune Disorders and Rare
Apr 3, 2018Apr 2018

Posted by Melbates
This is what I'm battling right now trying to explain to people my body doesn't work the way it looks like it should work.
2 comments
Autoimmune Disorders and Rare
Apr 4, 2018Apr 2018

Posted by LadyAlyxandrea
Every time
4 comments
Autoimmune Disorders and Rare
Apr 5, 2018Apr 2018

Posted by LadyAlyxandrea
So after work I checked into our e.r. to get a torodol shot for my perpetual migraine. In the middle of getting examined, my left nostril starts dripping water. Doctor R ks "Hm I don't feel right just popping you a cocktail and letting you run off. I...
2 comments
Autoimmune Disorders and Rare
Apr 6, 2018Apr 2018

Posted by LadyAlyxandrea
Sorry I'm all out of spoons but can I offer you a knife instead? -stabs-
3 comments
Autoimmune Disorders and Rare
Apr 8, 2018Apr 2018

Posted by Melbates
Body is a temple
3 comments
Autoimmune Disorders and Rare
Apr 9, 2018Apr 2018

Posted by Corsaire
New to the site but am very interested in meeting like minded individuals.... my affliction is cushing's disease.
1 comment
Autoimmune Disorders and Rare
Apr 9, 2018Apr 2018

Posted by Allikat
New to the group. I have lived with Psoriasis for the past 16years, I have also been told other wierd skin patches are eczema a with crippling gut issues. I am on Stalara, my 3rd type of biologic shot it's seems to keep my skin as clear as Embrel or ...
3 comments


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Photos 29 More

Posted by Sonja44Sums it up.

Posted by Sonja44This meme cracks me up. I'm Fine.

Posted by PiperMckennaAlways cold + sick days = Mermaid. Sometimes living with peoples who like the AC isn't such a bad thing.

Posted by PiperMckennaI'm quite prone to bruising because of EDS....any tips on how to reduce the look of bruises? Ideally I'd like to prevent them. But it's too late for that today. haha

Posted by LadyAlyxandreaI didn't learn my lesson well enough in March when my incisions refused to heal because i was working the crazy shifts.

Posted by ponz111I have restless leg syndrome which is not uncommon but with me it is my whole body which has the complusion to move.

Posted by LadyAlyxandreaPost op day 3 update: There will be some TMI, which I will mark so you can skip if you don't want to get grossed out.

Posted by LadyAlyxandreaBehold!!!! My weightloss progress thus far!!!! And an update: Surgery in two days.

Posted by RavenCTTruth,,,,,

Posted by LadyAlyxandreaHow it feels going to the doctor

Posted by LutherzmeAnybody else have to do this once a week?

Posted by LadyAlyxandreaPsst hey kid.... You wanna see something cool? (I scared the shit out of my ortho p.a. as he walked by my office. It was freaking hysterical)

Posted by LadyAlyxandreaFor today's game of "whats that weird random pain" I broke my big toe.

Posted by LadyAlyxandreaSo I finally have the date for MEETING my new neurosurgeon.

Posted by sassygirl3869Medical Reasons For Using Cannabis

Posted by sassygirl3869Multiple Sclerosis Relief
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