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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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RecentPosts By TaraMarshall (4) (Page 2 / 9) Posts by anyone

Autoimmune Disorders and Rare
Mar 25, 2019Mar 2019

Posted by LadyAlyxandrea
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?
1 comment
Autoimmune Disorders and Rare
Mar 25, 2019Mar 2019

Posted by LadyAlyxandrea
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 ...
1 comment
Autoimmune Disorders and Rare
Mar 23, 2019Mar 2019

Posted by LadyAlyxandrea
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 ...
2 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
Mar 21, 2019Mar 2019

Posted by LadyAlyxandrea
Aaaaand I have staph.....?
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 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 16, 2019Mar 2019

Posted by LadyAlyxandrea
Post 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. Today was my moms birthday. I managed the hazardous trek up stairs to attend her birthday lunch. I ate a slice and a half of pizza...
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
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 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 11, 2019Mar 2019

Posted by LadyAlyxandrea
Behold!!!! My weightloss progress thus far!!!! And an update: Surgery in two days. One day left of work. The doctor took me off 90% of my pain meds before surgery, to thicken up my blood. This has been a very horrifying time. I've discovered ...
5 comments
Autoimmune Disorders and Rare
Mar 9, 2019Mar 2019

Posted by Razorbacktat
Anyone research Tumor Necrosis Factor -a reducing diet or lifestyle. To my research it seems to be the key to all my aliments.
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 8, 2019Mar 2019

Posted by Swanky
Hello, I have been living with a Systemic Sclerosis limited/cutaneous diagnosis since 1994, and was just recently diagnosed with Antiphospholipid Syndrome, a blood clotting disorder. I'm wondering if anyone has these conditions? Thank you.
1 comment
Autoimmune Disorders and Rare
Mar 2, 2019Mar 2019

Posted by LadyAlyxandrea
Still alive!!! I know many of you (like 2) have been wondering where I've been. Truthfully I discovered the video game I used to play like 15 years ago came out on mobile so.... Anyway, I am having surgery on the 13th. Passed my preop appointment ...
4 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
Feb 18, 2019Feb 2019

Posted by Agenderaj
POLLHello! My name is AJ and my pronouns are they/them and he/him. I'm really happy to have found this group! I have gastroparesis and CVS, among other things. I was wondering who else here has GI conditions/issues, what they are, and how we might be ...
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3 comments
Autoimmune Disorders and Rare
Feb 11, 2019Feb 2019

Posted by Lutherzme
Once free, drug for rare disease now being sold for $375K a year.
1 comment
Autoimmune Disorders and Rare
Feb 10, 2019Feb 2019

Posted by LadyAlyxandrea
Oh non-existent lord give me strength. My aunt who is an RN is now a naturopathic homeopathic pyramid scheme smuck. I posted about how this new medicine gave me RLS. Suddenly she's linking me to veggies that counter RLS and teas and essential oils....
3 comments
Autoimmune Disorders and Rare
Feb 5, 2019Feb 2019

Posted by LadyAlyxandrea
I am SO livid. For a few weeks I've been having horrific facial flushing like ON FIRE feeling. I've been struggling with sleep. My angina came back for the first time since I was 18. My nerve pain is 40-60% worse than ever. And I found out today...
3 comments
Autoimmune Disorders and Rare
Jan 30, 2019Jan 2019

Posted by LadyAlyxandrea
Night terrors now. Fantastic.
2 comments
Autoimmune Disorders and Rare
Jan 27, 2019Jan 2019

Posted by LadyAlyxandrea
I had a miracle!!!! Yesterday I couldn't walk at all, no weight on my leg. Then I massaged the muscle a little, oh mama did that hurt. But then I stood up and POOF all better! Well sorta. I can walk again. Still sore, and my kneecap is bruised on ...
2 comments
Autoimmune Disorders and Rare
Jan 23, 2019Jan 2019

Posted by LadyAlyxandrea
I fell on the ice yesterday. Yep. Both legs are completely out of commission. I now have no working arms, nor legs. I'm just an emotional talking paperweight
4 comments
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

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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