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My Battle With Chronic Idiopathic Urticaria

4/19/2018

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Top: Fall 2013
​Bottom: Summer 2017
LIFE UPDATE:
So, today I am sharing something that only my closest family and friends have known about me. I'm not normally one to share something this personal, but I decided to post about my 7+ year struggle with chronic idiopathic urticaria {fancy term for unknown cause of chronic hives} to raise awareness and hopefully inspire others. This is my story:
After moving to Texas my sophomore year of high school I developed these spots that I thought were mosquito bites so for several months we kind of ignored them and I tried using bug repellent to prevent more "bites". We had our house treated more than normal for pests to try and help prevent these assumed mosquito bites, but it seemed to be doing nothing. I didn't have them every single day and they only lasted for a day or so, itching, slightly hurting, and swelling a bit- kind of similar to mosquito bites {which is where the assumption comes from}. Plus, living in Texas there is no shortage of these pesky bugs- LOL.
We went with this assumption for about a year before my mom and I went to a primary care doctor to inquire further. The doctor was "certain" that I had ringworm. My mom and I were so surprised by this as all the ways you get ringworm didn't really seem to fit with my lifestyle, but we trusted his expertise and went with this new diagnosis. The only issue was I had to get my blood taken every 3 months to make sure the intensity of the medication wasn't affecting my liver. After 3 months I saw absolutely 0 improvement and didn't see the reason to continue on such intense medicine {along with having to get blood drawn again} in order to keep trying something that clearly wasn't working. 
With this we went to a dermatologist. After meeting with them, they basically said they couldn't help me and recommended I go see an allergist. At this point I am a senior in high school. We then go to the allergist, but after the meeting we just didn't feel confident in the doctor's opinion or plan of action, so again we were back to square one. Feeling defeated I just kind of tried to ignore this issue and "suck it up" to try to just "recover" on my own from whatever this was that I was suffering from. However, that didn't last long before I was ready to try something to help me heal. We decided we needed to go back to the dermatologist because we were convinced that since these we spots on my skin that they should be able to help me. Well, they told us the exact same thing as the first time- that they couldn't help me and that I needed to go see the allergist. After this I felt REALLY defeated and frustrated because I was about to go into college and had been suffering for 3 years now with literally no answers. The top picture in the collage above is from the fall of my freshman year of college- probably when my hives {unknown at the time} were at their worst. I remember that day like it was yesterday. I was sitting on my dorm bed and lifted up my shirt and gasped. I was shocked at all the spots I saw and I cried because I knew I looked horrible and I had no idea how to heal my illness.
With this I went back to the allergist and this time we felt more confident about their plan of action to finding out the cause of these spots. They took 7 vials of blood to test me for all allergies {this is also when we figured out I have a vasovagal response to blood drawn/ injections-basically fainting- more fun! NOT}. The results came back that I had no allergies to anything and was just pretty deficient in vitamin D. Although, this finally led to a true diagnosis. I didn't have mosquito bites or ringworm, but instead chronic idiopathic urticaria. This translated basically means I have chronic hives that the cause for them is unknown {since my blood work came back clear}. I was prescribed a high dose of vitamin D to take for a few months to raise my level back to normal and they hoped this would cure my chronic hives. The vitamin D was great, except unfortunately it did not seem to be a long term solution for curing my hives. After about 6 months I was seeing them increasingly again and was pretty disappointed. I decided to just ignore it and hope, once again, that they would naturally go away.
Unfortunately, my spots didn't just "go away", they persisted, and over the course of my junior and senior years of college they seemed to increase and spread across my body. For my college graduation gift my mom took me to The Bahamas for a week and while there my hives were so bad we decided it was time to act again. It was time to REALLY find a cure. Upon returning to the US we made another appointment with the allergist. The bottom picture of the collage above is right after college graduation, right before this next allergist appointment {showing how bad it had gotten again}. This time the allergist told me about an intense medication, Xolair that was used to treat asthma and chronic idiopathic urticaria. I was skeptical at first because the medicine was newer, it was extremely expensive {like thousands of dollars per month}, was labeled in the same category as chemotherapy, and came in the form of two thick shots per month. I knew though after 6 years of suffering, I had to give it a shot because I NEEDED a cure.
So, in order to be approved for Xolair I had to first "fail" the most "rigorous treatment plan". That involved taking 2 different types of over-the-counter medications twice a day for a few months, not seeing significant improvement in my condition. That's exactly what happened, so after those few months I was approved for Xolair and was prescribed to be on it for 6 months, being hopeful it would cure me! The day after my first injection I had literally one spot and then for the next 6 months I had no more spots! It has been a miracle. That 6 months ended today as I had my last injection! It has been the longest, hardest road to recovery, but through this long journey I have experienced God's goodness. HE IS SO GOOD. Medicine is only half the battle, He had to make it actually effective and I am overjoyed that He has healed me and taken all the pain away. I've always been a really healthy person- rarely getting sick or needing to go to the doctor, so fighting this long battle was so hard for me, but I am SO excited to be able to proclaim VICTORY! Additionally, I only had 2 vasovagal responses out of the 6 months, which I consider a win since it very easily could have happened every time, making it an even more difficult road to recovery. 
Having chronic idiopathic urticaria has taught me so much. I had so many days of embarrassment because of these spots, and being someone that has always been very confident with myself and my appearance, this was something that really plagued me. I learned to love myself and care less about the small minded judgements of others. I also learned to not be so quick to jump to conclusions about people. Everyone is walking their own path with their own struggles- whether it's internal or external, so this entire battle really helped remind me to ALWAYS practice kindness first. The allergist believes this condition could have been triggered by stress {and sadly there's no guarantee I won't struggle with this condition off and on throughout my life}. Therefore, I have really been forced to slow down, take deep breaths, practice things that destress {yoga is a great one I'm looking forward to hopefully getting back into}, and to always make sure I am placing myself in healthy, encouraging, passionate situations- especially related to my career. Life is too short to work in a job where you are always stressed and unhappy. Be confident and strong enough to make the change! I did, and it was one of the best decisions I have ever made, and now I am even better at identifying what I need in my career.
So from sharing my story I hope y'all feel a renewed hope that God can work miracles in the most hopeless situations and that He makes everything good in His timing- NEVER give up. That He is so powerful and the importance of living KIND and being strong enough to place yourself in only healthy situations!

I hope you enjoyed my little life update! I am so happy to close this chapter of my life!:)

xoxo, Jess   
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