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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.

RecentPosts By TaraMarshall (4) Posts by anyone

Autoimmune Disorders and Rare
Aug 16, 2020Aug 2020

Posted by Sonja44
Sums it up.
0 comments
Autoimmune Disorders and Rare
Aug 15, 2020Aug 2020

Posted by Sonja44
This meme cracks me up. I'm Fine.
1 comment
Autoimmune Disorders and Rare
Aug 15, 2020Aug 2020

Posted by Sonja44
Im new here. Just popping in to say hi.
1 comment
Autoimmune Disorders and Rare
Jul 29, 2020Jul 2020

Posted by PandaCat
I need to lose some COVID weight but it’s so frustrating wanting to exercise after dinner bc I have insulin on board and then my sugar goes low. Then I load up on sugar to get it right again. Grrr... (autoimmune diabetes)
0 comments
Autoimmune Disorders and Rare
Jul 2, 2019Jul 2019

Posted by PiperMckenna
Always cold + sick days = Mermaid. Sometimes living with peoples who like the AC isn't such a bad thing.
0 comments
Autoimmune Disorders and Rare
Jun 27, 2019Jun 2019

Posted by PiperMckenna
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
5 comments
Shared from General & Hellos
Jun 26, 2019Jun 2019

Posted by PiperMckenna
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 ...
2 comments
Autoimmune Disorders and Rare
Jun 19, 2019Jun 2019

Posted by LadyAlyxandrea
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 ...
1 comment
Autoimmune Disorders and Rare
Jun 8, 2019Jun 2019

Posted by LadyAlyxandrea
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 to ...
3 comments
Autoimmune Disorders and Rare
May 27, 2019May 2019

Posted by LadyAlyxandrea
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 in...
0 comments
Autoimmune Disorders and Rare
May 18, 2019May 2019

Posted by LadyAlyxandrea
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...
0 comments
Autoimmune Disorders and Rare
May 16, 2019May 2019

Posted by LadyAlyxandrea
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...
3 comments
Autoimmune Disorders and Rare
May 16, 2019May 2019

Posted by LadyAlyxandrea
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 ...
2 comments
Autoimmune Disorders and Rare
May 10, 2019May 2019

Posted by LadyAlyxandrea
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 ...
2 comments
Autoimmune Disorders and Rare
May 10, 2019May 2019

Posted by AnonySchmoose
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 ...
0 comments
Autoimmune Disorders and Rare
May 4, 2019May 2019

Posted by LadyAlyxandrea
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 ...
0 comments
Autoimmune Disorders and Rare
Apr 21, 2019Apr 2019

Posted by Swanky
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 ...
0 comments
Autoimmune Disorders and Rare
Apr 15, 2019Apr 2019

Posted by LadyAlyxandrea
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 ...
1 comment
Autoimmune Disorders and Rare
Apr 12, 2019Apr 2019

Posted by LadyAlyxandrea
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 ...
4 comments
Autoimmune Disorders and Rare
Apr 3, 2019Apr 2019

Posted by ponz111
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. ...
2 comments
Autoimmune Disorders and Rare
Apr 3, 2019Apr 2019

Posted by LadyAlyxandrea
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 ...
1 comment
Autoimmune Disorders and Rare
Mar 31, 2019Mar 2019

Posted by LadyAlyxandrea
Goooooood morning! I slept 19 hours. I return to work tomorrow. I forsee I shall suffer lol
0 comments
Autoimmune Disorders and Rare
Mar 29, 2019Mar 2019

Posted by LadyAlyxandrea
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 over...
2 comments
Autoimmune Disorders and Rare
Mar 28, 2019Mar 2019

Posted by Lutherzme
Good article
1 comment
Autoimmune Disorders and Rare
Mar 26, 2019Mar 2019

Posted by LadyAlyxandrea
You've heard of Angels in the Outfield Well get ready for Almonds in my Icecream Ffs I cannot get a break
1 comment


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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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