I get a lot of questions about my Chronic Idiopathic Urticaria Angioedema. I still have a lot of questions about it myself! It's rare and is made even more rare by the fact that no one case is the same. People with it have different symptoms, different medications, and different responses to treatments.
1. What is Chronic Idiopathic Urticaria Angioedema?
Chronic means lasting longer than 6 weeks. Idiopathic means they don't know what caused it. Urticaria is hives. Angioedema is swelling. Put together they make an evil combination that I refer to as "the Unicorns".
2. How long have you had it?
44 weeks or 11 months.
3. What caused it?
They don't know. It started as an anaphylaxis (throat closing) reaction to grass cutting at school. I've always been highly allergic to grass, just never reacted like that. And I only knew it was anaphylaxis because I googled it! Then many more anaphylaxis reactions happened to random things and then the diagnosis was made.
4. Did you still work?
Yes, I had an amazing student teacher during the first half the school year who helped out a ton. I usually nap after school. My body adjusted to the high dose antihistamines after a few months. I am thankful for summer and a chance to rest!
5. Can it be cured?
From what I know about CIUA, there is not a cure. But people can go into remission. The year mark that I'm approaching is the time in which most people start to go into remission. (Fingers Crossed) Remission usually begins with swell/hive free days. I don't have those. I'm on a constant swell and hives that act up every day.
6. What is the shot you talk about?
Xolair. It's an injection that has something to do with immunoglobulin and mast cells and blocking allergic reactions. Next week I will receive my 2nd shot. It is monthly. I've seen no change in symptoms. But, I am still hopeful that the xolair will begin to work! I'm still on all my daily medications until I start to see changes.
7. Why have you gained so much weight? (I worded it nicer than it's been asked)
I was on high-dose steroids for 8 months. They have gnarly side effects and bizarre cravings/appetite issues. I'm also on 400+mg of antihistamines (one Benadryl pill is 25mg) daily. These large doses have the side effect of not being able to lose weight. And throw in the fact that I'm an emotional eater and the past 11 months have been a crazy emotional roller coaster and it's not a good combination.
8. How can I help you?
Pray. Pray for remission. Pray for my emotional health. Just pray! :)
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