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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 6 / 9) Posts by anyone

Autoimmune Disorders and Rare
Nov 4, 2018Nov 2018

Posted by LadyAlyxandrea
The war on opioids has claimed yet another victim. Day after day I hear of another pain patient committing suicide, and today is no different except this time they committed suicide by cop, and it was my moms friend. Today, I felt a sort of ...
2 comments
Autoimmune Disorders and Rare
Nov 12, 2018Nov 2018

Posted by LadyAlyxandrea
So I broke the small bones in my left foot and my toe about two months ago. I've not followed up with an ortho because my neck is more important to get fixed and I can only afford one major issue a year. Anyway my other foot the toenail on my big toe...
2 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 2, 2018Dec 2018

Posted by sassygirl3869
18 Common Pet Peeves When You Have Chronic Illness
2 comments
Autoimmune Disorders and Rare
Dec 17, 2018Dec 2018

Posted by LadyAlyxandrea
Narcolepsy. Let me tell you out of ALL of the problems I have I think that one is the most inconvenient. Growing up I never understood just how powerful narcolepsy can be. I would complain about my mom always falling asleep "come on just get up and ...
2 comments
Autoimmune Disorders and Rare
Jan 1, 2019Jan 2019

Posted by LadyAlyxandrea
How it feels going to the doctor
2 comments
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 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 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 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 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
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 13, 2018Jun 2018

Posted by LadyAlyxandrea
So today I saw my 'new' pain specialist. I say new but I've been a coworker of his for 3 years. He took one look at my cervical CT and shuddered. 3 neurosurgeons and a spinal surgeon and a different pain specialist ALL said my neck looked fine. ...
1 comment
Autoimmune Disorders and Rare
Jun 21, 2018Jun 2018

Posted by JesseBoren
Went to the hematologist today, she says it looks like I do have polycythemia vera. Go back in 10 days for final results, if those aren't definitive I will have to get a bone marrow biopsy. Luckily it's very treatable although it's called a blood ...
1 comment
Autoimmune Disorders and Rare
Jun 23, 2018Jun 2018

Posted by memorylikeasieve
So I went to physical therapy today for my initial appointment and they discovered that I have joint hypermobility, which is why everything slides out of whack so easily, and why I've been having so many dislocations and muscle spasms. It's kind of ...
1 comment
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 6, 2018Jul 2018

Posted by memorylikeasieve
I work running deliveries with Door Dash, which is a lot like Uber Eats. Tonight I was unhappy with myself because I had to end my delivery hours earlier than I thought i should do. But with this narcolepsy and joint hypermobility I should probably...
1 comment
Autoimmune Disorders and Rare
Jul 12, 2018Jul 2018

Posted by LadyAlyxandrea
Little victories: I washed the dishes and remembered my lunch today
1 comment

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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