CIU. What is it and what does it mean to me?
Last year I was diagnosed with CIU. I will explain what it is then how it effects me.
Chronic Idiopathic Urticaria. Chronic Urticaria means chronic hives, Idiopathic means they don't know why this happens.
What happens is an antibody gets triggered, then attacks my healthy cells. This forms the mast cells (hives). Then these antibody's travel through the rest of my body looking what looks foreign to it and attacks it. This is an autoimmune disease.
To me, this means I can eat any piece of food then I break out in hives, I start to swell, then it attacks my stomach and bowels, putting me in alot of pain. Finally, it targets my eyes causing severe rash around my eyes, severe dryness and, yes, blindness.
The risk is that I will eventually swell to the point I will choke to death. We don't know what else will happen because my doctor has not seen to many people with this disease that it attacked my stomach/bowels and eyes like it did me. This disease is different for everyone, and will attack differently for everyone. Some people are lucky and just get a severe rash with swelling. I have not been that lucky.
What happened is this. Last year, the night before we had our first foster care placement I broke out in hives. We chucked it up to stress and excitement of having a child in our home and left it. Two weeks later, I woke up on a saturday, and grabbed a piece of pizza out of the fridge for breakfast. Mind you, I had this same pizza two nights prior and had no issue. That is where I broke out in hives, started to swell, and I could feel the pain in my stomach, I knew this was bigger then just hives so I said to Bo, my husband, that we needed to get to the ER. We started to get our shoes on when I stopped being able to see. I freaked out and had Bo call 911. I had already taken a few antihistimines but they were not working and the fact that I went blind scared the shit out of me. By the time the ambulance got to our house my sight returned and swelling went down, but I was more than exhausted.
Today I am on regular antihistimines. By the way, if you take benedryl regularly. Stop. They have found that taking benedryl regularly leads to early dementia. I now take Zyzal, as it doesnt cause drowsiness but still does the trick. I had to the learn that lesson the hard way. I take 24 hour allegra twice a day as well as a VERY EXPENSIVE shot called Xolair. I have to get this shot once a month but after my follow up next month we will probably move to a couple months in between. Its designed like karo syrup. It sticks in my bloodstream so it stays, you have to go on a building up period at first and you run the risk of swelling so you carry around an epi pen for a while. Then you go on a maintenence period like I am now.
Now I struggle with being extremely dehydrated. I drink SO MUCH water and tea during the day. There are days where I forget to work as hard on it and I pay for it. I lay down and the world will just spin and spin. I try to work out and laying down to do floor exercises make me pukish, though I have never puked. If I use to heavy a weight the world will spin and it feels like I'll never be able to excercise like everyone else does. I still have flare ups. I'll be feeling hot, then cold, my ears will get red and swell. The worst is when I feel my back is on fire. I just take an extra antihistimine and drink more water. Its all I can do. But its not as severe as it was in the beginning.
There is good news in this. Some people have to deal with this the rest of their lives once they are diagnosed. But theres a damn good chance that one day, I will wake up, and this will be gone. As fast as it came on, it'll walk out the door. My doctor said the average is about 3 years. This february will mark one full year. Two to go. I know that by eating better and excercising I am changing my cells. My hope is that it will make me recover from this faster. Heres hoping.
I am starting this blog to journal this crazy ride. To remember what works and what doesn't. And, for anyone who is diagnosed with this crazy autoimmune disease, to show your not alone.
-B
Chronic Idiopathic Urticaria. Chronic Urticaria means chronic hives, Idiopathic means they don't know why this happens.
What happens is an antibody gets triggered, then attacks my healthy cells. This forms the mast cells (hives). Then these antibody's travel through the rest of my body looking what looks foreign to it and attacks it. This is an autoimmune disease.
To me, this means I can eat any piece of food then I break out in hives, I start to swell, then it attacks my stomach and bowels, putting me in alot of pain. Finally, it targets my eyes causing severe rash around my eyes, severe dryness and, yes, blindness.
The risk is that I will eventually swell to the point I will choke to death. We don't know what else will happen because my doctor has not seen to many people with this disease that it attacked my stomach/bowels and eyes like it did me. This disease is different for everyone, and will attack differently for everyone. Some people are lucky and just get a severe rash with swelling. I have not been that lucky.
What happened is this. Last year, the night before we had our first foster care placement I broke out in hives. We chucked it up to stress and excitement of having a child in our home and left it. Two weeks later, I woke up on a saturday, and grabbed a piece of pizza out of the fridge for breakfast. Mind you, I had this same pizza two nights prior and had no issue. That is where I broke out in hives, started to swell, and I could feel the pain in my stomach, I knew this was bigger then just hives so I said to Bo, my husband, that we needed to get to the ER. We started to get our shoes on when I stopped being able to see. I freaked out and had Bo call 911. I had already taken a few antihistimines but they were not working and the fact that I went blind scared the shit out of me. By the time the ambulance got to our house my sight returned and swelling went down, but I was more than exhausted.
Today I am on regular antihistimines. By the way, if you take benedryl regularly. Stop. They have found that taking benedryl regularly leads to early dementia. I now take Zyzal, as it doesnt cause drowsiness but still does the trick. I had to the learn that lesson the hard way. I take 24 hour allegra twice a day as well as a VERY EXPENSIVE shot called Xolair. I have to get this shot once a month but after my follow up next month we will probably move to a couple months in between. Its designed like karo syrup. It sticks in my bloodstream so it stays, you have to go on a building up period at first and you run the risk of swelling so you carry around an epi pen for a while. Then you go on a maintenence period like I am now.
Now I struggle with being extremely dehydrated. I drink SO MUCH water and tea during the day. There are days where I forget to work as hard on it and I pay for it. I lay down and the world will just spin and spin. I try to work out and laying down to do floor exercises make me pukish, though I have never puked. If I use to heavy a weight the world will spin and it feels like I'll never be able to excercise like everyone else does. I still have flare ups. I'll be feeling hot, then cold, my ears will get red and swell. The worst is when I feel my back is on fire. I just take an extra antihistimine and drink more water. Its all I can do. But its not as severe as it was in the beginning.
There is good news in this. Some people have to deal with this the rest of their lives once they are diagnosed. But theres a damn good chance that one day, I will wake up, and this will be gone. As fast as it came on, it'll walk out the door. My doctor said the average is about 3 years. This february will mark one full year. Two to go. I know that by eating better and excercising I am changing my cells. My hope is that it will make me recover from this faster. Heres hoping.
I am starting this blog to journal this crazy ride. To remember what works and what doesn't. And, for anyone who is diagnosed with this crazy autoimmune disease, to show your not alone.
-B
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