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Author Topic: Out of curiosity... anyone else battling an autoimmune disease?  (Read 878 times)

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Offline bluerose9978

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Out of curiosity... anyone else battling an autoimmune disease?
« on: December 02, 2017, 01:48:48 AM »
I have been battling an autoimmune disease called antiphospholipid syndrome since my early teens. I actually didn't know at that time what I had. My doctor knew I had something related to lupus but didn't know what it was and I was formally diagnosed by the Mayo clinic when I was 20 when I was having flares in the form of hemi-chorea and constant migraines with auras.

Since that time, I have had mini strokes and miscarriages, preeclampsia, grand mal seizures, thrombocytopenia, livedo riticularus, and many other symptoms.

I'm just curious as to whether anyone else in the pony community can relate. I almost feel alone as I personally have not met anyone who has APS. I have family who suffer from other autoimmune diseases so they can kind of relate.

Offline Carebearnmbr46

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Re: Out of curiosity... anyone else battling an autoimmune disease?
« Reply #1 on: December 02, 2017, 04:43:15 AM »
I don’t. But my heart goes out to you. It must be incredibly hard and trying at times to battle something you feel like you have no control over. But just because you have this disorder, you’re really not that different from the rest of us. I’m sure you have a beautiful spirit and a great personality. Maybe you’ve heard that before. I genuinely mean it, though.  We all have hard things to battle. I suffer from social anxiety (mild but still daunting). I think I have mild Asperger’s syndrome too. I also have OCD. Please don’t feel alone. You aren’t. I care. And I’m sure others do too.

Offline Mewtwofan1

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Re: Out of curiosity... anyone else battling an autoimmune disease?
« Reply #2 on: December 02, 2017, 06:23:29 AM »
I don’t have it, nor have I heard of it until now. While I don’t have anything I’m aware of, I know how hard it is. My mother has Crohn’s, so I can kind of relate. It’s not a picnic having something like that. But hey. You’re living life in hardcore mode!
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Offline bluerose9978

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Re: Out of curiosity... anyone else battling an autoimmune disease?
« Reply #3 on: December 02, 2017, 01:24:02 PM »
Thanks, guys! I just never hear anything about autoimmune diseases from Hollywood or in the news. Recently, Selena Gomez finally came out that she had lupus because she had to have a kidney transplant. I have found with my disease that 50% of people with it also have lupus (SLE). Thankfully, I am not one of them. Also, blood clots (DVTs, PEs) are also very common with this disease. I have been able to avoid them so far. Maybe it is because of my active lifestyle. Maybe because I stay hydrated. Maybe because I got on blood thinners at an early age. But it scares me.

So if anyone else has a chronic disease, please do share!

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Re: Out of curiosity... anyone else battling an autoimmune disease?
« Reply #4 on: December 02, 2017, 09:05:45 PM »
That sounds so rough. :hug: I have an autoimmune disease of the thyroid. Makes me forever tired, cold and sluggish.
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Offline bluerose9978

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Re: Out of curiosity... anyone else battling an autoimmune disease?
« Reply #5 on: December 02, 2017, 09:19:08 PM »
That sounds so rough. :hug: I have an autoimmune disease of the thyroid. Makes me forever tired, cold and sluggish.

I'm always tired and cold, too. I'm not sure if I'm cold from APS itself or because of the blood thinners, though. I sometimes wonder whether I have Reynauds, too, especially when my fingers and toes change color and won't warm up. It seems autoimmune diseases like to travel in packs. Some people have several. I don't know how they deal. I have enough problems dealing with one.

Offline Einhornbaby

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Re: Out of curiosity... anyone else battling an autoimmune disease?
« Reply #6 on: December 04, 2017, 01:36:34 PM »
Im really sorry to hear that  :hug: that kind of battle is hard, I wish you lots of power to carry on!
Im battling Hashimoto-Thyreoiditis and Diabetes next to a couple of other things. Going on is hard sometimes.

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Offline bluerose9978

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Re: Out of curiosity... anyone else battling an autoimmune disease?
« Reply #7 on: December 04, 2017, 02:19:37 PM »
Im really sorry to hear that  :hug: that kind of battle is hard, I wish you lots of power to carry on!
Im battling Hashimoto-Thyreoiditis and Diabetes next to a couple of other things. Going on is hard sometimes.

Wow, that's a lot to be battling! What do you do to make
life better /easier? Since I am tired and cold all the time, coffee is a helper for me.

Offline achab1984

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Re: Out of curiosity... anyone else battling an autoimmune disease?
« Reply #8 on: December 04, 2017, 02:48:55 PM »
I have something with my stomach and lots of intestine issues in my life! :( Stuff that will never go away ever! :(

Offline Mami Tomoe

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Re: Out of curiosity... anyone else battling an autoimmune disease?
« Reply #9 on: December 04, 2017, 04:50:32 PM »
My mom does and im sure I have crohns too my mom doesn't have any meds that work for her
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Offline bluerose9978

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Re: Out of curiosity... anyone else battling an autoimmune disease?
« Reply #10 on: December 04, 2017, 05:01:25 PM »
My mom does and im sure I have crohns too my mom doesn't have any meds that work for her

Trust me, I understand. Some of my meds help somewhat but mostly in preventing symptoms. I still get migraines, still get dizzy spells like I have gotten before a seizure, haven't been able to make it through a pregnancy and have clotting issues.

Offline achab1984

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Re: Out of curiosity... anyone else battling an autoimmune disease?
« Reply #11 on: December 04, 2017, 06:07:36 PM »
Oh and I also found out that I have a gluten allergy also! No wonder I have felt like $#*@ for so many years now!

Offline pinkkittywinks

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Re: Out of curiosity... anyone else battling an autoimmune disease?
« Reply #12 on: December 05, 2017, 08:56:45 PM »
Wow, APS sounds awful, I'm sorry you have to deal with that :( I've not heard of it before, what athing to live with.

I have Coeliac disease, Dermatitis Herpetiformis and I've recently had surgery to treat and diagnose Endometriosis (I believe there is some sort of immune system involvement with Endometriosis)

There is no medication I can take for the Coeliac Disease or Dermatitis Herpetiformis, like most autoimmune disease you can only manage the symptoms. I have to stick to a very strict gluten free diet.

Autoimmune Thyroid disease runs in the female side of my family, but I'm the only Coeliac/DH in the family.

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Offline bluerose9978

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Re: Out of curiosity... anyone else battling an autoimmune disease?
« Reply #13 on: December 05, 2017, 09:12:11 PM »
Oh and I also found out that I have a gluten allergy also! No wonder I have felt like $#*@ for so many years now!

I have a cousin with Celiac. I don't envy people with it. Fortunately, it's something that is well known enough that there are so many gluten free foods. However, for me, when I go eat, I can never find where they offer vitamin K- free foods when I need to avoid them for my disease because vitamin K clots your blood and works to counteract with my blood thinners and throw off my INR which I have to get tested every month while being on them to make sure my blood isn't too thin or too thick.

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Re: Out of curiosity... anyone else battling an autoimmune disease?
« Reply #14 on: December 05, 2017, 09:29:13 PM »
It's tricky as gluten free is a bit of a fad, that can make it difficult for someone with an intolerance or Coeliac disease as things labled as gluten free, might not be :crazy: you have to check, check and check again. Gluten also hides in medication (even prescribed medication), beauty products , drinks and so on.

That's tricky trying to avoid a vitamin :( most foods they fortify with vitamins as they think we all need extra and it's not always true. Barley Malt is used as a carrier to fortify foods with vitamins and it's not gluten free, often turning what would be gluten free to not being safe! I also avoid vitamin E fortified things as it's often derived from wheat.

Love pkw xxx