The MLP Arena
Pony Talk => Off Topic => Topic started by: bluerose9978 on December 01, 2017, 05:48:48 PM
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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.
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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.
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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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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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That sounds so rough. :hug: I have an autoimmune disease of the thyroid. Makes me forever tired, cold and sluggish.
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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.
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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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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.
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I have something with my stomach and lots of intestine issues in my life! :( Stuff that will never go away ever! :(
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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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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.
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Oh and I also found out that I have a gluten allergy also! No wonder I have felt like $#*@ for so many years now!
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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.
Love pkw xxx
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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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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
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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
It's really tricky to avoid things that interact with Coumadin (the blood thinner I take). I can't take most over the counter meds without an interaction. The only pain medicine I can take is Tylenol. I can't eat greens. No lettuce, broccoli, beans, peas, guacamole, kale, spinach, brussel sprouts, blueberries, pumpkins, etc.
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:(
As a rule of thumb, I'm safe with fresh foods you cook from scratch, but no veggies/greens would make me miserable. Bread and processed foods are easy to live with imho.
You have to be careful with most medications, but blood thinners are tricky. I had a boss who took blood thinners (she suffered from multiple strokes) and like you had blood drawn every month.
:hug:
Love pkw xxx
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Nothing serious, just Anemia and thyroid issues. Anemia is the bigger problem which is supposedly caused by heavy menstral bleeding but they never really checked for any internal bleeding, just assumed that was the cause. Anyways, Iron supplements do not work for me so I need iron infusions.
All I want to do is sleep and before the infusions, I would have to take several naps a day. I was getting blood work every 2 weeks. Now its once a month. My CBC is always "funky" and no one seems to know why.
There are other symptoms but fatigue is the biggest one. I am also always cold, especially my feet, shortness of breath, ect which can be caused by the thyroid or anemia.
Plus I think I am allergic to some common food ingredient that is used alot here but not in China. When I was there, I didn't have the stomach issues that I have here.
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Nothing serious, just Anemia and thyroid issues. Anemia is the bigger problem which is supposedly caused by heavy menstral bleeding but they never really checked for any internal bleeding, just assumed that was the cause. Anyways, Iron supplements do not work for me so I need iron infusions.
All I want to do is sleep and before the infusions, I would have to take several naps a day. I was getting blood work every 2 weeks. Now its once a month. My CBC is always "funky" and no one seems to know why.
There are other symptoms but fatigue is the biggest one. I am also always cold, especially my feet, shortness of breath, ect which can be caused by the thyroid or anemia.
Plus I think I am allergic to some common food ingredient that is used alot here but not in China. When I was there, I didn't have the stomach issues that I have here.
I'm anemic, too. My anemia isn't as bad anymore since I had a uterine ablation (I was suffering heavy periods from APS plus the blood thinners on top). Like you, I am always cold. Have they checked you at all for Reynaud's? I have been told by people doing ultrasounds on my legs I have small blood vessels and I'm almost worried that they will diagnose me with it within a few years.
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Oh no, so sorry to hear that so many people here have to deal with such bad symtoms and diseases... :(
Youre so strong guys, so strong!! Dont stop keeping your heads up, I know you can! :hug:
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.
First thing for me : keeping up with the docs, having my blood tested every 8-12 weeks at least and checking the symptoms. It was hard to accept at first since I had a fear of needles but in the end its better to know whats going on than to speculate what could be :)
In everyday life :
Im having sports therapy twice a week which helps me a lot... Cant go each time Id like to since moving hurts too much sometimes but to be honest : it was the only thing that was really helpful yet.
I try to eat healthy. I have banned convenience food and artificial sugar (and as pinkkittywinks said, be safe with veggies and cooking from scratch!) and I try to keep myself away from too much stress and drama since it makes the symptoms worse.
Im also trying not to think about it all too much and try to enjoy little things. My husband i.e. has a clever trick : whenever I start moaning he will respond with "Did you read the news today" or anything like that to get me to discuss something else to distract me. Works well these days. Distraction is a big thing when you have a bad day in battle!
And coffee really is a savior!! <3 Indeed!
Keep strong! :hug: youre not alone!! If you feel to, Im always open for talking!!
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First thing for me : keeping up with the docs, having my blood tested every 8-12 weeks at least and checking the symptoms. It was hard to accept at first since I had a fear of needles but in the end its better to know whats going on than to speculate what could be :)
In everyday life :
Im having sports therapy twice a week which helps me a lot... Cant go each time Id like to since moving hurts too much sometimes but to be honest : it was the only thing that was really helpful yet.
I try to eat healthy. I have banned convenience food and artificial sugar (and as pinkkittywinks said, be safe with veggies and cooking from scratch!) and I try to keep myself away from too much stress and drama since it makes the symptoms worse.
Im also trying not to think about it all too much and try to enjoy little things. My husband i.e. has a clever trick : whenever I start moaning he will respond with "Did you read the news today" or anything like that to get me to discuss something else to distract me. Works well these days. Distraction is a big thing when you have a bad day in battle!
And coffee really is a savior!! <3 Indeed!
Keep strong! :hug: youre not alone!! If you feel to, Im always open for talking!!
I understand about the needle thing. I have to have my blood tested at least once per month. If my blood is off (like it is right now since I started new medication because my GI doc diagnosed me with IBS) then I have to go in more often until we can get the correct dosage so my blood won't be too thin or clot too much.
Like others, I have banned certain foods/drinks for myself. I don't drink sugary drinks. I may indulge in a latte/cappuccino from time to time, but no juice or soda pop. I don't eat red meat. I drink a lot of water. I drink a glass of red wine at night (it has thinning properties and antioxidants and since the only thing my docs have said is in moderation, I'm going to continue unless they say otherwise).
I have a two-year-old and we go outside almost daily unless the weather is bad and get our vitamin D. He's very active and keeps me active.
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Tiki I used to have to treated for anemia and folic acid deficiency at least once every 12 months. It was put down to me having Coeliac disease, but since I had my heavy periods stopped (IUD to control heavy bleeding), I've only been treated for anemia and folic acid deficiency once in the last six years. I'm sorry you struggle with your thyroid as well, it's a horrible illness.
Einhornbaby you have a lot to deal with. My Mum has had serious thyroid issues throughout her life, including Hashimoto-Thyreoiditis. I've had an unstable thyroid in the past and have yearly thyroid checks.
Love pkw xxx
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I was diagnosed with Rheumitoid Arthitis when I was 3yrs old. Contrary to popular belief its not a old persons disease and doesn't just effect the joints. Its a serious autoimmune disease that can't cause a lot of damage. I'm legally blind without glasses after it attacked my eyes and had kidney and heart damage as a child. You're not alone hun
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I was diagnosed with Rheumitoid Arthitis when I was 3yrs old. Contrary to popular belief its not a old persons disease and doesn't just effect the joints. Its a serious autoimmune disease that can't cause a lot of damage. I'm legally blind without glasses after it attacked my eyes and had kidney and heart damage as a child. You're not alone hun
I'm so sorry. My grandma had it, too. Her fingers and hands looks like they belonged to someone else, they were so large and swollen. I don't think of it as an old person's disease. I have always thought of osteoarthritis as more of an old person's disease, even through my grandma seemed to be affected later in life. But I do understand how autoimmune diseases don't just limit themselves to attacking one place, such as the joints. Since mine is known to attack the blood, and yet I suffer with brain trauma and kidney and liver trauma.
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Just got diagnosed with Ehler Danlos Syndrome and then the Hypermobility variant, or HMS-EDS....10 years back they told me...Owh you just have Fibromyalgia...here is a leaflet...read it and you don't have to come back because there is no treath for it and if the pain is to much just take OTC Paracetamol!!!!
I'm 39...and next time I go to the Reumatologist....I need to speak about getting a wheelchair for times I need to walk to far or when walking is a nono for that day...
This dissease effect me on soooo many levels....and because I got my diagnose just before the Christmas Season....I find it difficult to express how this is affecting my life....I'm still in a WTF modus....sorry!
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Just got diagnosed with Ehler Danlos Syndrome and then the Hypermobility variant, or HMS-EDS....10 years back they told me...Owh you just have Fibromyalgia...here is a leaflet...read it and you don't have to come back because there is no treath for it and if the pain is to much just take OTC Paracetamol!!!!
I'm 39...and next time I go to the Reumatologist....I need to speak about getting a wheelchair for times I need to walk to far or when walking is a nono for that day...
This dissease effect me on soooo many levels....and because I got my diagnose just before the Christmas Season....I find it difficult to express how this is affecting my life....I'm still in a WTF modus....sorry!
Oh, man! I'm so sorry! I don't blame you at all for being in WTF mode, especially since so many people are misdiagnosed when it comes to autoimmune diseases or told it's all in our heads. It's so frustrating! And we can't get help until something catastrophic happens.
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My rheumatologist tentatively diagnosed me with EDS a few years ago but since it primarily presents in me as several hypermobile joints he didn't bother with the genetic testing. I have trouble with stitches and scarring too. Aside from joint pain I don't have a lot of problems.
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Some of the things described here are terrifying. You are all so strong for talking about it and be open.
I suffer from Hypothyroidism, IBS, Anxiety and Depression. Working on it though!