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.


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Always cold + sick days = Mermaid. Sometimes living with peoples who like the AC isn't such a bad thing.
Posted in Autoimmune Disorders and Rare group
PiperMckenna 6 MO July 2 Jul 2 00 comments
I'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 in Autoimmune Disorders and Rare group
PiperMckenna 6 MO June 27 Jun 27 44 comments
Hello! I'm Piper. I've been diagnosed with Elhers-Danlos Syndrome. Anyone else have this diagnosis? I'm currently looking for recommendations for a nice shoulder brace because my shoulder just won't stay the heck in, tips on living with EDS, info ...
Also posted in General & Hellos
PiperMckenna 6 MO June 26 Jun 26 22 comments
I didn't learn my lesson well enough in March when my incisions refused to heal because i was working the crazy shifts. Today i got multiple sets of stitches in my shoulder and my thigh. Dermatology removed some deep benign skin tumors to send to ...
Posted in Autoimmune Disorders and Rare group
LadyAlyxandrea 8 KS June 19 Jun 19 11 comment
I met with HR and was approved to begin part time as of august 1st. I also met with my new disability lawyer and he said my case will be difficult because of my age but he is certain i can win. Now comes the challenge: The judge my lawyer wants...
Posted in Autoimmune Disorders and Rare group
LadyAlyxandrea 8 KS June 8 Jun 8 33 comments
So I'm officially immunosuppressed. My secondary injection went well and we are already showing signs that my immune system is suppressing. That's exactly what we want, but I forgot a crucial variable when we decided on this endeavor. I am always ...
Posted in Autoimmune Disorders and Rare group
LadyAlyxandrea 8 KS May 27 May 27 00 comments
I am currently working with Amber pharmacy out of Omaha with my humira program and I have to say, they are the most comprehensive and fully amazing pharmacy I've ever seen. All the pharmacies around here just fill meds but this place has coordinators...
Posted in Autoimmune Disorders and Rare group
LadyAlyxandrea 8 KS May 18 May 18 00 comments
My gp frustrates me sometimes. We work REALLY well together one on one, but when it comes to working together as a team on my issues that require working together with my entire healthcare team, he plugs his ears and goes "nananana let the diagnosing...
Posted in Autoimmune Disorders and Rare group
LadyAlyxandrea 8 KS May 16 May 16 33 comments
Gonna be a LOOOOOONG day....insomnia attack from hell of course when i have a meeting in 6 hours with my supervisor and HR about my shift to part time and my disability application and then an appointment with my doctor. Plus side friday i get my ...
Posted in Autoimmune Disorders and Rare group
LadyAlyxandrea 8 KS May 16 May 16 22 comments
I'm cleaning the entire house today. Well, my half and the laundry and computer room (can we even call it a computer room anymore no one uses the computers and it's basically just become a storage area at the bottom of the stairs....) as well as ...
Posted in Autoimmune Disorders and Rare group
LadyAlyxandrea 8 KS May 10 May 10 22 comments
First post in this group: In 2017 I experienced a severe auto-immune flare up that lasted about 6 weeks. Eventually I was diagnosed with systemic lupus and put on a very expensive immune system suppressant. Have begun dodge triggers and find ...
Posted in Autoimmune Disorders and Rare group
AnonySchmoose 8 HI May 10 May 10 00 comments
Well my belly button finally healed. My other two are starting to, i think. Took them long enough. Today is my last 12 hour shift and my last over night. Now on saturdays I'll work 7p-3a, which is much more doable for me since my usual bedtime is ...
Posted in Autoimmune Disorders and Rare group
LadyAlyxandrea 8 KS May 4 May 4 00 comments
Hello, I'm wondering if anyone has heard of an experimental therapy for essentially stalling auto-immune disease called Helminthic Therapy? It's basically ingesting live parasites (e.g., worms) to provoke an infection that requires the immune system ...
Posted in Autoimmune Disorders and Rare group
Swanky 6 TX Apr 21 Apr 21 00 comments
So doc cleaned out my incisions and reglued them shut. Apparently for whatever reason those two just don't want to heal shut and that's why they keep getting infected. She hopes the glue will urge them to shut but if they don't start closing by next ...
Posted in Autoimmune Disorders and Rare group
LadyAlyxandrea 8 KS Apr 15 Apr 15 11 comment
It's been one month now since my surgery and my belly button is still infected. Worse now tonight my right bottom port started oozing pink foam. I'm going to go out on a limb and say that's not a good thing. Called the doctor and she made an ...
Posted in Autoimmune Disorders and Rare group
LadyAlyxandrea 8 KS Apr 12 Apr 12 44 comments
I have restless leg syndrome which is not uncommon but with me it is my whole body which has the complusion to move. If I lay down to try and sleep it sets in. And i will hit the bed very hard with my fist a few times which helps only a few seconds. ...
Posted in Autoimmune Disorders and Rare group
ponz111 4 IL Apr 3 Apr 3 22 comments
So two days ago I started my new anti-epileptic, topamax. I'm on a really really low dose so far so I haven't really noticed any changes. However for the last two days I've thought I've been losing my mind. Every soda I drank tasted flat and stale ...
Posted in Autoimmune Disorders and Rare group
LadyAlyxandrea 8 KS Apr 3 Apr 3 11 comment
Goooooood morning! I slept 19 hours. I return to work tomorrow. I forsee I shall suffer lol
Posted in Autoimmune Disorders and Rare group
LadyAlyxandrea 8 KS Mar 31 Mar 31 00 comments
Yesterday for Dinner my brother and I went to McDonald's because ALL day i only wanted some freaking nugs. I went in starving because i knew we were going today and i was so excited for nugs And i ate 3 nugs and 5 fries and was almost sick from ...
Posted in Autoimmune Disorders and Rare group
LadyAlyxandrea 8 KS Mar 29 Mar 29 22 comments
Good article [healthgossip.site]
Posted in Autoimmune Disorders and Rare group
Lutherzme 8 PA Mar 28 Mar 28 11 comment
You've heard of Angels in the Outfield Well get ready for Almonds in my Icecream Ffs I cannot get a break
Posted in Autoimmune Disorders and Rare group
LadyAlyxandrea 8 KS Mar 26 Mar 26 11 comment
Tried googling support for non-religious terminally ill and all I get is a bunch of links for faith with dying and how faith is dying. What about those of us dying who don't have a faith? Where's our help?
Posted in Autoimmune Disorders and Rare group
LadyAlyxandrea 8 KS Mar 25 Mar 25 11 comment
Managed to flip my sleep schedule back to normal, but now I'm constantly tired again and taking naps again. I think the infection is on the downward move, getting better, so maybe I'm just exhausted from fighting that and healing. oh and my new ...
Posted in Autoimmune Disorders and Rare group
LadyAlyxandrea 8 KS Mar 25 Mar 25 11 comment
pain, infection, weird red scabs that look like scabies, unstable and bizarre sleeping patterns, hormone imbalance, absolutely ridiculous nightmares, root canal, only being able to be out for 3 hours before absolutely crashing... All this I can ...
Posted in Autoimmune Disorders and Rare group
LadyAlyxandrea 8 KS Mar 23 Mar 23 22 comments
My new dentist is a cunning one. He didnt tell me until I was in the chair that we were doing a root canal today. He said he knew I'd try to put it off if I knew. He's very correct. I've never had a root canal before, and I'm already terrified of ...
Posted in Autoimmune Disorders and Rare group
LadyAlyxandrea 8 KS Mar 22 Mar 22 11 comment


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