How many autoimmune diseases can you have?

That's a lot to manage. How are you doing with this?

Denise

😂😂 I’m tired! Honestly that would be my chief complaint. That and all the pain i have 24/7. It’s in my joints, my spine, neck, back, knees, it’s literally head to toe. And it can be inside out depending if any of my autoimmunes go out of remission. All the medication (23 prescriptions taken several times a day including chemo) make me even more tired. That’s just the physical part of it.

Mentally it’s depressing because I’m only 51 years old and I’ve been living on SSI for 10 years now because for some freak of nature my body decided to come up with these autoimmunes ..8 & counting and I say that because I was just told yesterday about the 8th one and it seems every time I turn around there’s another one. No one in my family has them yet they’re hereditary…🤷🏻‍♀️ I missed out on a lot of my kids fun part of their teen years because i couldn’t take them to the places or do things with them like regular parents do. I spend most of my day confined to a recliner. Because im in pain. I watch as life goes on around me….friends…family….ppls whose dreams came true…or had half a chance at making them. I’m angry at my body for doing this. Angry at myself for feeling this way. And the saddest part is I’ve already accepted that my lifespan was told once to me by a Dr to be mid 60’s. IF…IF I make it there. I’ve literally almost died 4 times between 2019-2023. It was crazy. And they told me if i ever got covid good chance i might not survive..I’ve had it 3x…I’m a fighter. I’m just depressed and angry.

But I wake up everyday and I try to look at the lil things in life I am grateful for …. Because that’s how I live a happy healthy life. Instead of curling up and dying. I have 2 beautiful daughters that are now 22 & 21. I taught myself to crochet last summer and now I have my own lil business Kozy Kidz Kaps of making children’s character crocheted hats. And I love it! I make sure I go out with friends atleast once a month. My sister once a month. So there’s a couple times out. Plus I go out with my kids. I am planning a cruise this summer. Granted I can’t do all the activities I might want. But i can go to the indoor pool because it has the staircase and not the ladder, I sit by the ocean in the afternoon and I’m allowed 1 frozen mudslide 😂 (I normally can’t and don’t drink due to autoimmune hepatitis but on vacation my dr lets me have 1 a day…since I might vacation every 1-2 years. Although I haven’t been in 3!) I love playing bingo. Sitting on the deck having a puff, listening to the music while watching the ocean and looking over the ppl either facing or sometimes they’re playing a game with the ppl. Watch karaoke. Go on shore. I have a scooter so i just zip around the boat n shore 😂. I take my joy where i can!

😂😂 I’m tired! Honestly that would be my chief complaint. That and all the pain i have 24/7. It’s in my joints, my spine, neck, back, knees, it’s literally head to toe. And it can be inside out depending if any of my autoimmunes go out of remission. All the medication (23 prescriptions taken several times a day including chemo) make me even more tired. That’s just the physical part of it.

Mentally it’s depressing because I’m only 51 years old and I’ve been living on SSI for 10 years now because for some freak of nature my body decided to come up with these autoimmunes ..8 & counting and I say that because I was just told yesterday about the 8th one and it seems every time I turn around there’s another one. No one in my family has them yet they’re hereditary…🤷🏻‍♀️ I missed out on a lot of my kids fun part of their teen years because i couldn’t take them to the places or do things with them like regular parents do. I spend most of my day confined to a recliner. Because im in pain. I watch as life goes on around me….friends…family….ppls whose dreams came true…or had half a chance at making them. I’m angry at my body for doing this. Angry at myself for feeling this way. And the saddest part is I’ve already accepted that my lifespan was told once to me by a Dr to be mid 60’s. IF…IF I make it there. I’ve literally almost died 4 times between 2019-2023. It was crazy. And they told me if i ever got covid good chance i might not survive..I’ve had it 3x…I’m a fighter. I’m just depressed and angry.

But I wake up everyday and I try to look at the lil things in life I am grateful for …. Because that’s how I live a happy healthy life. Instead of curling up and dying. I have 2 beautiful daughters that are now 22 & 21. I taught myself to crochet last summer and now I have my own lil business Kozy Kidz Kaps of making children’s character crocheted hats. And I love it! I make sure I go out with friends atleast once a month. My sister once a month. So there’s a couple times out. Plus I go out with my kids. I am planning a cruise this summer. Granted I can’t do all the activities I might want. But i can go to the indoor pool because it has the staircase and not the ladder, I sit by the ocean in the afternoon and I’m allowed 1 frozen mudslide 😂 (I normally can’t and don’t drink due to autoimmune hepatitis but on vacation my dr lets me have 1 a day…since I might vacation every 1-2 years. Although I haven’t been in 3!) I love playing bingo. Sitting on the deck having a puff, listening to the music while watching the ocean and looking over the ppl either facing or sometimes they’re playing a game with the ppl. Watch karaoke. Go on shore. I have a scooter so i just zip around the boat n shore 😂. I take my joy where i can!

@sallysworld73 So sorry. Hang in there.
Drugs can cause autoimmune disorders. My simple example is if I take ibuprofen, I will get a psoriatic arthritis flare.
Do you have lupus erythematosus ? This is from Medicine Plus:

"Ten percent of individuals worldwide are affected by autoimmune diseases, with systemic lupus erythematosus (SLE) being one of the most common.1 Drug-induced lupus erythematosus (DILE) was first recognized in 1945 with sulfadiazine as the offending agent.2 Since then, more than 90 medications from more than 10 drug classes have been implicated in causing lupus.1,3 DILE is estimated to affect 15,000 to 20,000 individuals each year and accounts for 10% of SLE cases.
https://www.pharmacytimes.com/view/drug-induced-autoimmune-diseases
The most common medicines known to cause drug-induced lupus erythematosus are:
Isoniazid
Hydralazine
Procainamide
Tumor-necrosis factor (TNF) alpha inhibitors (such as etanercept, infliximab and adalimumab)
Minocycline
Quinidine

Other less common drugs may also cause the condition. These may include:
Anti-seizure medicines
Capoten
Chlorpromazine
Methyldopa
Sulfasalazine
Levamisole, typically as a contaminant of cocaine
https://medlineplus.gov/ency/article/000446.htm#:~:text=Anti%2Dseizure%20medicines,Symptoms%20may%20include:
Having 3 or more autoimmune disorders is referred to as Multiple Autoimmune Syndrome (MAS).

You know what??? I think at 3 autoimmune diseases, you have officially earned the right to take any and all current and future diagnoses and either make up a new name for each of them or make one name that encompasses ALL of them.

I call all my diseases/disorders (I’m only up to 3 chronic illnesses) collectively (and this is the polite version of the name here):
Heinous Freakery Most Foul

To me it is just my shorthand for the way my body gets too inflamed too much and doesn’t stop being inflamed normally and I’m just not going to feel well because of it.

In the last 1.5 years, I have been diagnosed with Sjogren's, Hashimoto's, RA, Autoimmune Hepatitis 1, Barrett's Esophagus. and am currently working with Mayo's GI and Urogynecology to finally get some answers on the gut issues I've had for 30+ years. I've seen numerous doctor's and specialists over the years and no one, except Mayo, has been able to arrive at an answer. They have identified Chron's and failed pelvic floor and we're working on resolutions. I've gone from a long-distance runner, long distance bike rider, master gardener, gymnast to a person unable to function normally due to pain, extreme fatigue and depression. All I can say is that you have to advocate for yourself constantly. I have always felt that there is a connection between all of my issues and Mayo has been able to confirm that everything is autoimmune related to each other. So far, no medications have been prescribed for the specific AI issues. Be strong and dn't give up!!!