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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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Most Commented Posts By TaraMarshall (4) (Page 5 / 9) Posts by anyone

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 9, 2018Apr 2018

Posted by Basilisa01
Thank you for making this group. I was diagnosed with polydermatomyositis, fibromialya and IBS on Dec 2011. My conditions atracks all type of muscles, the skin and my digestive system. The treatments caused me lost of near and far sight, diabetes, ...
2 comments
Autoimmune Disorders and Rare
Apr 9, 2018Apr 2018

Posted by JustADreamer
I have Guillain-Barre Syndrome. First time was 9/12/1993. Was in Sarasota Memorial Hospital for 6 months. . The hospital did a story on me, as well as a medical magazine, from California. Critical Care Nurses. October of 1994. Hope to...
2 comments
Shared from Health & Happiness
Apr 11, 2018Apr 2018

Posted by TaraMarshall
Woke up with right hip partially dislocated, can't get it to slip back into place. Ow. Need to suck it up, I've got a meeting with the Phoenix PD Cross Disability Advisory Council to get to. Life with Ehlers-Danlos Syndrome. If I can't get it ...
2 comments
Autoimmune Disorders and Rare
Apr 18, 2018Apr 2018

Posted by Robert56
I am going to bed. My new g is to pull up lights on youtube and let it play all night LIVE .
2 comments
Shared from Health & Happiness
Apr 30, 2018Apr 2018

Posted by TaraMarshall
So, I was wondering if anyone else had read Dr. Terry Wahls' books on nutrition/special diets for autoimmunity? I've done most of her suggestions, and pushed my ANA numbers for Lupus into remission. I would consider that fairly successful, ...
2 comments
Autoimmune Disorders and Rare
Jun 25, 2018Jun 2018

Posted by BookDeath
Just returned from seeing my new neuro-nurse practitioner! (A female, btw.) She was like night and day from the previous neuro-jerk! We're titrating down from this horrid AED and discussed what is acceptable in terms of seizures. ALL AEDS have ...
2 comments
Autoimmune Disorders and Rare
Jun 28, 2018Jun 2018

Posted by Fredbeth
Hi. New member here. I have EPGA, with lung damage, Arthritis, Reynauds and various issues due to above illness. It all sucks. My heart goes out to all of us sufferers.
2 comments
Autoimmune Disorders and Rare
Jul 3, 2018Jul 2018

Posted by Dingodog
So, how are you dealing with the social security, lack of income, insurance, copays and rent mortgage and so on. My wife was misdiagnosed with MS about 3 years ago even though she was asymptomatic. I just found out today that insurance for the with...
2 comments
Autoimmune Disorders and Rare
Jul 3, 2018Jul 2018

Posted by LadyAlyxandrea
I am pretty sure today will be the last day I can wear makeup. This is a acceptance because I've always really loved how pretty I am with makeup on, but as I struggled with my eyeliner and worse with my mascara I realized it's probably just not ...
2 comments
Autoimmune Disorders and Rare
Jul 8, 2018Jul 2018

Posted by nutrition_nerd
That's right!
2 comments
Autoimmune Disorders and Rare
Jul 13, 2018Jul 2018

Posted by LadyAlyxandrea
I've a lengthy to do list today, despite wanting to spend it all in bed. So far I'm doing good. Frequent breaks, doing what I can do sitting down. I still need to get the trash together so my brother can take it out for me (too hard to take it ...
2 comments
Autoimmune Disorders and Rare
Jul 30, 2018Jul 2018

Posted by memorylikeasieve
Little victory: to-day I made a homemade barbecue sauce despite awful back pain. It entailed over an hour of standing at a stove in arch support shoes and a back brace, but I did it!
2 comments
Autoimmune Disorders and Rare
Aug 1, 2018Aug 2018

Posted by BookDeath
I'm getting VERY tired tired of having to explain to each new doctor that no, I don't IBS (irritable bowel syndrome), bad enough though that is. I have collagenous colitis, which a form of INFLAMMATORY BOWEL DISEASE, akin to Crohn's and the like. It...
2 comments
Autoimmune Disorders and Rare
Aug 22, 2018Aug 2018

Posted by LadyAlyxandrea
Aaaand I've developed cervical vertigo. It's kinda debilitating. Like more than pain. Even laying down it feels like I just got off a spiny ride at the fair. It makes me nauseated and my head feels like it might roll off. I can stand and walk and ...
2 comments
Autoimmune Disorders and Rare
Aug 23, 2018Aug 2018

Posted by Lutherzme
Hi there. I've been fighting polymyositis for over 10 years. It tore up my lungs in about 8 and Ive been lucky enough to receive a double lung transplant. 3 Plus years since and I'm still truckin'! ScienceSaves BetterLivingThruChemistry
2 comments
Autoimmune Disorders and Rare
Aug 24, 2018Aug 2018

Posted by LadyAlyxandrea
It's not fair that I have all the suffering of Crohn's disease and none of the weightloss. If I have to suffer I'd rather it have one silver lining
2 comments
Autoimmune Disorders and Rare
Aug 27, 2018Aug 2018

Posted by LadyAlyxandrea
Just another day in the life of an EDS patient Took one step and spraines my ankle
2 comments
Autoimmune Disorders and Rare
Aug 27, 2018Aug 2018

Posted by LadyAlyxandrea
After spraining My ankle I turned around two hours later and broke my toe. Y'all don't know how gross it is to set a toe bone. It made a squishing pop
2 comments
Autoimmune Disorders and Rare
Sep 9, 2018Sep 2018

Posted by ArtzyNerd
Hi all. I'm celiac and PCOS. Also have IgA deficiency
2 comments
Autoimmune Disorders and Rare
Sep 17, 2018Sep 2018

Posted by RobH86
Does anyone have experience of CBD infused water. I Have ulcerative colitis, and read today that Coke a Cola is considering making a drink with the oil in it. The only product I have found available to me now is called love hemp water. Does it really...
2 comments
Autoimmune Disorders and Rare
Sep 19, 2018Sep 2018

Posted by LadyAlyxandrea
My pain is getting much worse. I've dropped out of taekwando because I just hurt too much now. Master says I can still participate the days I can and I don't have to do everything, I can sit out as much as I need, too. He's so kind and understanding ...
2 comments
Autoimmune Disorders and Rare
Oct 9, 2018Oct 2018

Posted by sassygirl3869
Fibromyalgia Relief
2 comments
Autoimmune Disorders and Rare
Nov 1, 2018Nov 2018

Posted by DoDapper
My primary rare disorders are terminale filum TCS (tethered cord syndrome) and arachnoiditis. Not a rare disorder but related to my TCS correction, I have a T1-L3 fusion. Nice to see this group.
2 comments
Autoimmune Disorders and Rare
Nov 3, 2018Nov 2018

Posted by LadyAlyxandrea
Going through the "memories" on Facebook and I realized it's just a journal of my disorder and chronic pain of me slowly evolving from "DRUGS ARE BAD!" to "Drugs are good, m'kay" In my defense I will not actually survive without my medicine, and I ...
2 comments

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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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