The life of a sick person

Me with a hive (*technically angioedema). 06-16-14

Me with a hive (*technically angioedema). 06-16-14

2014-06-26 22.16.28

A hive on my other eye 2 days later

 From June 2005 until August 2014, I have suffered from chronic urticaria and angioedema. For all you non-medical people reading this, chronic is considered anything that lasts more than six months, urticaria is hives and angioedema is a hive in the tissue of the first layer of the skin-like the lips.

After nine years of dealing with hives on any and every part of my body, I had given up all hope of ever getting better. When I say I had given up, I am not being overdramatic. I am not trying to give my writing more of a punch. In terms of hope, I literally had none. No faith in doctors or medicine or anything. I honestly believed I would struggle with one day waking up with my eyes like they are in the pictures above or with my foot being so swollen I couldn’t put on shoes to walk to class to take a test. I honestly believed for the rest of my life I would deal with randomly being unable to do simple stuff like write or hold a fork with my dominate hand because my hand was swollen to five times its normal size. Once again, nothing I am saying is for dramatic effect; these are all real examples. Fall semester last year I missed a geography quiz because my foot was so swollen I couldn’t put on shoes to walk across campus and no one was around to drive me. Countless times, I have struggled to eat with my left hand because I was unable to bend the enormously swollen fingers on my right hand. One time, I had to get my dad to cut my chicken for me. At the time I was 18 years old. I ask for no pity- only understanding.

On top of this, I was told by people close to me that if I prayed enough and if I trusted enough, God would heal me. So of course, when he didn’t what those same messages conveyed to me was that I didn’t believe enough, I didn’t pray enough. I fully believe God works miracles. I also believe that sometimes God works through doctors. Let me tell you something: there is absolutely no shame in not being healed through a miracle. God does not fit in the palm of your hand. God does not fit in your box and he is not limited by you. While I encourage anyone with health problems to pray consistently and fervently, I want you to know this: if God doesn’t heal you, it is not necessarily a reflection of your faith.

In Matthew 16:33, Jesus said in this world you WILL have trouble but take heart for I have overcome the world. He did. You can. Suffering is a part of this life. Sometimes you get better. Sometimes you don’t. Never let anyone tell you that’s indicative of your faith in Jesus Christ.

After nine years, I have been hive free for 82 days. 83 days ago I literally couldn’t remember the last time I hadn’t had at least one hive on my body because it had been literal years.

In the middle of August, I began to get Xolair injections. Xolair is this wonderful new drug that combats chronic hives for people who don’t know what causes it and nothing else works for- I was a perfect candidate. I vividly remember the day my mom called to tell me the doctors wanted me to try it. I cried in the parking lot. I sat there and bawled because I had hope and it overwhelmed me. In The Hunger Games , President Snow explains that the reasons for The Hunger Games is because the only thing stronger than hope is fear. I don’t think I have ever felt an emotion more strongly and wholly than the hope I felt in that moment. I fully believe that Jesus gave me this. Just because it came from Christ through doctors doesn’t make it any less sweet for me. If anything it makes it more so. I know what it is like to struggle with looking like something from a freak show on a weekly basis. I’ve gotten countless second glances and innumerable, “Oh my goodness, what is wrong with you?” I struggled to be ok with it. I don’t know that I ever became content with it. Resignation doesn’t equal contentment. But I can tell you one thing for sure. I am far more grateful now than I would have had I been healed seven years ago or even three years ago. And since God has chosen to heal me through modern medicine I have been blessed by more people. I have doctors and nurses who care about me on a personal level. They want to know how I’m doing in school. They want me to succeed on every level.

I am writing this for 10th grade little Jackie being told hives could last who knows how long: 6 weeks, 6 months or 6 years and never believing it would actually be longer than 6 years. I am writing to every person who is in the middle of a seemingly endless tunnel. I am writing this to the person who goes to doctors and get 13 tests that all come back negative but is still living with a broken body.

My love, there is a light at the end of the tunnel. Keep fighting. Get out of bed and tell the world and the pain and the shame to go to hell. I use strong words because I have strong feelings and I refuse to sugarcoat it- even for naive little Jackie. She deserves the truth. It will suck. It will hurt mentally and physically. At one point in your life you’ll take 11 pills a day and feel shameful but it’s okay. Make it to October 23, 2014. Sit in the doctors office and laugh as Jeanette Arnold and Richard DeShazo casually talk about weaning you off your medicine- something you thought would be a lifelong crutch. Fight til you get to August 17, 2014 and your hives are literally nothing more than a bad dream. Become the girl who can feel UGLY and still take a selfie smiling to document the a painful hive. You get to be her one day. And I’m proud of her.

I’ve given you Jesus’s words now here’s something from Taylor Swift because TSwift knows angst AND how to be classy.

Hold on, baby, you’re losing it// The water’s high, you’re jumping into it// And letting go… and no one knows// That you cry, but you don’t tell anyone// That you might not be the golden one// And you’re tied together with a smile// But you’re coming undone.

People mock her but she knows her stuff. I just want you to know that there is hope. It will not come when you want it to. It may not come til heaven. But one day, everything will be fine and you will know the full value of a working body. You’ll want to cry sweet tears of relief when you can do normal things without consequences. Until then, I’m here to chat with. I understand, at least to some extent, what your going through. Talk to me. Tell me what makes you cry and jaded. Get it out if you need to. I’m without judgment: jackiegiles93@gmail.com
Or do it your own. Cry. Journal. Blog about it to let someone else know they aren’t alone. Let it teach you grace and patience.
I wanna hear your story.
Love, Jackie

P.S. Please share if you know anyone else who needs to grace and encouragement!

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