Chronicittles: Katie's Lupus' Story {part one}

April 3, 2014

{Chronicittles Disclaimer: Those that are sharing their personal chronicittles stories are sharing just that- their stories. They are people that are struggling {or have struggled} with the ins and outs of a chronic illness and have found ways of surviving and thriving. Their stories are meant to encourage, inspire, and challenge those that are struggling but are in no way meant to be a physician's advice. Please be aware that this is a space for learning and encouraging and not a space that will allow critical comments of any persons story. A reader should consult with his/her physician regarding any information gleaned from these stories. Thank you so much for reading!}

It's with great pleasure that I share with y'all today part one of Katie's story! Even though I have never met her "in person" I am honored to call her a friend! She is truly inspiring and I am excited to have her share her story with y'all! If you have not already spent some time at her blog you definitely should! You will quickly fall in love with this gal, her sweet writing, and her lovely pictures! 
*all pictures in Katie's post story are Katie's *
I am so thankful that Rebecca is letting me share my story on her blog today. 
This Fall, I finally opened up on my blog, Hope Engaged, about the many years I've dealt with failing health, and how the Lord has redeemed this part of my story! Today you'll hear Part 1 of my health story, and next Thursday, you'll hear part two:) 

Part 1
I feel incredibly thankful for you readers. Truly, what a beautiful community we have here in blogging. One of the reasons I started this blog was to share my life with others. To connect. To build community. To be honest and vulnerable…and real. 
Photo property of Katie, Hope Engaged Blog
And I realized on Thanksgiving day, after I ran 3 miles straight at our local "Run for Food" race, that I was incredibly grateful to be able to run. You might look at this and laugh and think  "3 miles…ppssshhh, that's nothing". And if 3 miles is cake to you…YOU GO GIRL! But to me, a girl with body broken, this was something. It was a victory. 
And while delighting in this small miracle, I also realized how little I've shared with you about my health. I'm not really sure the reason. Maybe there is a fear that i'll seem whiny, or ungrateful, or just sad. And I suppose sometimes I really do feel each of those emotions as though they owned me. But they don't own me, and my health doesn't either, and in the spirit of being brave, i'm ready. 
To share. At least…to being to share. 

My freshman year in the dorms, I woke up one morning and thought I was paralyzed. I couldn't move. My sweet roommate did my hair, got me dressed, and somehow managed to cart me to the health center. My joints were swelled so bad I was practically worthless. I couldn't open doors, I had to take massive amounts of pain killers to just get out of bed and walk. I felt like a walking arthritis ad. Wasn't that only for 80 year olds? I thought…not 18 year olds.   
Photo property of Katie, Hope Engaged Blog
For years I was tested for everything under the sun. everything came back negative. the doctors were baffled. They had no idea. So my body was pumped with antibiotics and harsh painkillers. and my heart pumped out hurt and confusion, and my eyes poured tears. every day, every day, every day, and then repeat. Psalms 56:8 says that the Lord collects our tears in a bottle. I think he must own a whole storeroom of mine. 

A few years out of college, I began realizing that I wasn't going to get better by just believing the doctors confusion. I decided it was high time to do some research of my own. One day I happened upon a link that said "If you have 4 or more of these symptoms, you may have Lupus"

I had 9 of the symptoms. I marched myself right into the hospital and kindly/frantically asked if I could be tested for Lupus. It was positive. I'll never forget that day. I opened the results, and I wept. 
I was scared, but also grateful that I had uncovered the first step in getting better. 

But it was still a long road. 

My very first appointment with a rheumatologist after my diagnosis was thick was fear. 
I was told:
- you can't have kids
-you are allergic to the sun, and must be covered AT ALL TIMES
-you must be on medications for the rest of your life because Lupus is a chronic disease. 

In a dazed stupor I stumbled home and proceeded to cry myself into a literal mess. The kind of low howling cry where tears and snot and hair mingle and you look as though you just crawled out of a swamp. red eyes puffy, and pain oozing from every fiber and cell in my body. 

The truth was,I wanted to have kids, and I loved the sun, and I never wanted to take medication ever again. Never ever ever! But the doctors orders were completely opposite. On my way out the door at the doctors, I was handed an old ladies magazine full of SPF clothing that would help keep me "safe" from a Lupus flare. I opened the first page and was mortified to discover that what they wanted to sell me was visors, and big brimmed hats and baggy clothes and just generally old people doing old people things. This just isn't fair! I cried. I'm not old. I don't want to do old people things! 
And so I began to hide. I wore floppy big hats everywhere, even in my car. I covered every inch of my body with fabric. I lost my tan and became pasty white. And I began to resent normal people who wore normal clothes like tank tops and swim suits. I'll never forget one day at the beach in Santa Cruz. I was literally covered head to toe in clothing, with a huge floppy hat on (from the dang magazine!)
and I just snapped. I was so envious of all my family around me that just ran around in suits like it was 
no big thang. and it was no big thing…normal people wear bathing suits. 
Photo property of Katie, Hope Engaged Blog
For any of you that have struggled with a chronic illness, you get this. You get that "normal" things are so enticing and dreamy when you can't have them. and you "get" the emotional pain attached to the physical pain. But this story ends in hope, I promise. 
it's a long one, so i'll share more next Thursday in Part 2. Thank you for giving me the space to share this part of my life with you. In a sense, it's liberating! And Jesus has done so much, so i'm excited to share more! And as a last word, if any of you are struggling with health, I'd love to pray for you:) So send me an email!! 

Happy Thursday dear ones! 
much love,
Isn't she simply wonderful?? Thank you so much Katie for taking the time to share part of your story! Stay tuned next Thursday for part two of Katie's journey!

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