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

Autoimmune Disorders and Rare
Nov 12, 2018Nov 2018

Posted by Dingodog
My wife was misdiagnosed with MS a few years back. She was 60, asymptomatic but had a plaque pattern on consistant with, but not exclusive to MS. They started he on an MS drug right away. I later learned the there is no medical therapy that will ...
0 comments
Autoimmune Disorders and Rare
Nov 18, 2018Nov 2018

Posted by rogeralyn
About 2 weeks ago I asked Tara if I could post this here and have not heard a response so... I am starting a new site designed for people who have a chronic illness or condition and find it hard to start a relationship on other dating sites. It's ...
0 comments
Autoimmune Disorders and Rare
Nov 22, 2018Nov 2018

Posted by rogeralyn
Based on feedback I've changed the name and web address of the previously announed new dating website for the chronically ill. It's now at:
0 comments
Autoimmune Disorders and Rare
Dec 6, 2018Dec 2018

Posted by LadyAlyxandrea
If you ever feel like someone doesn't really listen to you, just remember I told my GP that I was being referred to a specialist for M.S. and he said "oh that's good"
1 comment
Autoimmune Disorders and Rare
Jan 1, 2019Jan 2019

Posted by LadyAlyxandrea
How it feels going to the doctor
2 comments
Autoimmune Disorders and Rare
Jan 6, 2019Jan 2019

Posted by sassygirl3869
Chronic Illness Makes it Hurtful to Look at Social Media?
5 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
Mar 17, 2019Mar 2019

Posted by LadyAlyxandrea
Today was pretty good. I slept 8 hours and managed to stay awake the whole day without a nap. I cleaned my wounds and took a real shower, washed my hair and everything. That was a little too gunho, alas, and I nearly fainted in the shower. But I'm ...
3 comments
Autoimmune Disorders and Rare
Mar 19, 2019Mar 2019

Posted by LadyAlyxandrea
Day 6, not one person from work has asked me how I'm doing during my recovery. Not a single person. Today this makes me feel really sad and uncared for. When lisa has her surgery we all talked to her every day and made sure she was doing alright. ...
1 comment
Autoimmune Disorders and Rare
Mar 21, 2019Mar 2019

Posted by LadyAlyxandrea
Aaaaand I have staph.....?
3 comments
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
Mar 22, 2019Mar 2019

Posted by LadyAlyxandrea
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 ...
1 comment
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
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
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 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
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
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
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
Jan 9, 2019Jan 2019

Posted by LadyAlyxandrea
I need to rant. Crps comes with debilitating brain fog. I'm talking Alzheimer's level forgetfulness. Unfortunately my mother can't seem to comprehend this, and is constantly berating me and insulting me and talking down to me. Today I forgot to ...
1 comment
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
Feb 20, 2019Feb 2019

Posted by sassygirl3869
Feeling guilty on good days with chronic illness? Does anyone feel this way?
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
Jan 6, 2019Jan 2019

Posted by LadyAlyxandrea
I've managed to sleep on and off for about 15 hours today. I'm actually in an uncharacteristically large amount of pain from the trip. It concerns me. My last three trips to Kansas city didn't hurt this bad. But I'm also fighting off a ...
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

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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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