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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 Viewed Posts By TaraMarshall (4) (Page 6 / 9) Posts by anyone

Autoimmune Disorders and Rare
Aug 27, 2018Aug 2018

Posted by dawilderone
Ulcerative colitis and psoriatic arthritis. Had no idea that UC was auto-immune until informed by Dr who diagnosed PA
1 comment
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
Oct 4, 2018Oct 2018

Posted by ArtzyNerd
Initiation of Phase 2 Clinical Trial of Therapeutic Vaccine for Celiac Disease
1 comment
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 11, 2018Nov 2018

Posted by LadyAlyxandrea
Okay now I am irritated. I am on a little immunosuppression therapy to try and control my mcas. (Mast cell activation syndrome) My coworkers and family are all well aware that I'm immunosuppressed. My coworker was at work with a sore throat for ...
3 comments
Autoimmune Disorders and Rare
Nov 20, 2018Nov 2018

Posted by LadyAlyxandrea
Adjusted my meds lately, and felt really really not half bad tonight. Especially after sleeping like 12 hours lol. I started taking an extended release muscle relaxer instead of my normal ones that knock me out, and started taking my oxy by halves ...
2 comments
Autoimmune Disorders and Rare
Dec 28, 2018Dec 2018

Posted by LadyAlyxandrea
The holidays are almost over and honestly I couldn't be more relieved. Like most chronically ill people, the holidays cost about a thousand more spoons than I am allotted. It's really a challenge getting back this time. I've been having like a month ...
3 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
Jun 3, 2018Jun 2018

Posted by rogeralyn
Although this is about introducing the new Bionic pancreas, the first 9 min's are probably the best explanation of what it's like to live with T1 diabetes. ://youtu.be/bZXmfTxd79Q
1 comment
Autoimmune Disorders and Rare
Jun 17, 2018Jun 2018

Posted by BookDeath
Hello, all. I have: Post-stroke syndrome (now rearing its ugly head); collagenous colitis (a form of inflammatory bowel disease); epilepsy; and osteoporosis, mild CP, AND an AVN. Do I fit this group?
4 comments
Autoimmune Disorders and Rare
Aug 13, 2018Aug 2018

Posted by LadyAlyxandrea
Behold friends! My feet after one hour of cooking. Notice the soft ball sized ankle swelling, the horrific spasm that has my toes locked in a twisted position. Ahhhh multifocal dystonia is so much FUN. Freaking EDS. when people ask why I need a ...
1 comment
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 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
Jan 1, 2019Jan 2019

Posted by LadyAlyxandrea
Fun stuff! My brother and father have the flu. Bad. Plot twist my stupid brother sipped out of my pop the other day too. If you recall I'm immunosuppressed. And last night I woke up with my throat on fire. Now it's still tender but not at all as ...
1 comment
Autoimmune Disorders and Rare
Jan 22, 2019Jan 2019

Posted by Nunulady
Does anyone here have Lupus? Have you ever had the cash on your face? Thanks.
0 comments
Autoimmune Disorders and Rare
Mar 9, 2019Mar 2019

Posted by KarlaMcNeese
Anyone else here living with multiple sclerosis? I was diagnosed in 2013. Not currently on any dmd's, although in the past I've been on Copaxone (hated the needles).
0 comments
Autoimmune Disorders and Rare
Mar 14, 2019Mar 2019

Posted by LadyAlyxandrea
Day 2: helppppp The abdominal pain wouldn't be so bad, if it were not for EVERY MUSCLE IN MY BODY feeling pulled. Muscles I didnt know i had hurt. Goodness gracious. Yesterday was alright, i felt pretty decent, but today holy moly no thank you. ...
2 comments
Autoimmune Disorders and Rare
Mar 12, 2019Mar 2019

Posted by LadyAlyxandrea
Miraculously enough, I've finished it all. My bathroom sparkles, my living room is perfectly set up so I can reach my books and charger, my bedroom is perfect. The fridge is stocked, enough cigarettes to last me two weeks stacked neatly by my bed, my...
2 comments
Autoimmune Disorders and Rare
Mar 13, 2019Mar 2019

Posted by LadyAlyxandrea
I LIVE almost home now. I'm on a lot of meds so feeling pretty okay my calves are sore AF and my stomach was really painful until the drugs kicked in. I'm pretty good though I got some nugs and my mom is helping me get around. Since I haven't ...
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
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
Jul 3, 2018Jul 2018

Posted by LadyAlyxandrea
I threw my dinner on the floor. My tremors are so bad lately I always feel like I've got giant vibrators instead of arms. I normally laugh it off and try not to let it get to me, but watching the fried chicken I spent two hours making fly around my ...
1 comment
Autoimmune Disorders and Rare
Jul 10, 2018Jul 2018

Posted by LadyAlyxandrea
Little Victory time! I went shopping a while ago, got some food. Came home and cooked some food and two angel food cakes (I call them faithless food cakes lol).
3 comments

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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