My health journey, Part 1

Monday, December 2


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. 

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. 

{on race day…}

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.   

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
and
-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. 

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 soon 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 Monday dear ones! 
It's December…WOO HOO!! 
much love,
Katie 

To read more, Part 2 is {here}



33 comments :

  1. Oh, Katie, that sounds so tough. But I want to hear the 2nd part!

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  2. I'm so glad you are able to share this. Now we can all pray for you!

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  3. That sounds so hard! I am looking forward to part 2 and seeing how God has worked in your life. I've had a bit of a health scare lately but Jesus has been with me through it all!

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  4. wow. that sounds hard but I know everyone has their struggles. I have had my fair share of mine thru the years. 10 yrs with stomach issues after having gallbladder surgery 10 yrs ago. our struggles is what makes us who we are today. You can get thru this. and can beat it with power of Prayer and faith and strength in God.

    pinkowl07.blogspot.com

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  5. That must have been such a terrifying time. Congratulations on your amazing running achievement and your bravery to share your story, another testament to your strength :) x

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  6. Wow you are such a brave soul!! Praises to God for the healing that he is more than able to do. I have an Aunt and a friend with Lupus, it's more common than people know.

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  7. Amazing! Thanks so much for sharing. I never realized how much healing and liberation comes with sharing our struggles and fears. Much love to you my dear friend!

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  8. Thanks so much for sharing-- I can't wait to read part 2. That sounds difficult but it's wonderful that you've gained such a great perspective.

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  9. thank you for being brave and sharing.
    as much as your struggle is exactly a struggle - your life is such a light to those around you.
    i'm very interested in reading part two.
    you are such a beautiful & strong woman who puts her faith in the Lord - and it is encouraging.

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  10. So so thankful for your honesty and opening up your heart to us. :) What an AMAZING story, can't wait to hear the rest! I can't imagine what you are going through.....I'll probably have more to say once I see Part 2 :)

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  11. Thank you for being so open and honest! You are so brave!

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  12. that must be really difficult. i just finished reading mother teresa's biography last week, and it was a really challenging read. there were a lot of times that she suffered physically and gave it up to god as an offering. she actually chose suffering so that she could relate to jesus and be closer to god. i've been questioning what lessons i'm going to take away from this going forward. looking forward to reading part 2.

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  13. you write so beautifully friend : )i can't even imagine hearing that kind of news. i can't wait to read part two because i know that God is good and he has amazing plans for you in the future : )

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  14. Oh my goodness, Katie, I had no idea! I'm so sorry that you have had to walk through this (especially so long with NO answers!). I am excited to read part two of this story, though!

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  15. Can't wait to hear part 2! What an amazing journey already!

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  16. I can only run a mile at most, and am more of a sprinter, so three miles is incredible to me.
    +Victoria+

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  17. Thanks for your vulnerability, Katie. I didn't realize the extent of what you were dealing with when you were diagnosed with Lupus. I wanted to share one of the promises of Scripture I've clung to and claimed over and over again amongst my health challenges... Amos 9:11, "I will restore David's fallen shelter--I will repair its broken walls and restore its ruins--and will rebuild it as it used to be." So cool :) Looking forward to hearing part 2 of your story! Love ya!

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  18. Wow, what a story. I admire your vulnerability in sharing your health journey, Katie. I look forward to hearing the continuation of this tale, and hope the outlook now is bright.

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  19. ;-) Your story WILL insipre others! and show them that ..... THERE IS ANOTHER WAY! as it has me, so thank you again!

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  20. Thank you for sharing this story. My best friend was just diagnosed with a rare disease and I sometimes struggle with finding the right words, love, and support for her. Reading over this reminds me that it doesn't matter what words I say, as long as I'm there supporting her - it means something.

    So glad to hear you're doing well today and were able to run 3 miles!

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  21. oh sweet friend my heart is heavy after reading this! thank u for doing the brave thing and sharing your story. it's exciting to imagine how many lives you have touched already. i am anxious to hear part II and know that i am praying for you love. you are beautiful. you have a beautiful heart and a beautiful soul. love you!

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  22. Thank you for opening up about this struggle. I cannot even imagine the painful years of wondering the why's and how's of the future. I am excited to hear Part 2, and even more excited for the part that is still to be written (and has been written by the hands of the One who holds you when the questions and worries arise!) because there is hope and there is joy even in suffering. Love you for your bravery, honesty, and joyful attitude!

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  23. Oh Katie you are so brave to share! You truly are an inspiration dear! My husband and I have been been struggling with illness over the last two years, first me and now him. I understand the emotion that comes with the physical pain. The unknown and the struggle to continue to praise in the midst of turmoil! Praying sweet friend. Can't wait to hear the rest! Love!

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  24. You´re so brave to share. I love you and I´m so thankful for how far you have come! xoxo

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  25. So much love for you, girl!! This made me weep xoxo

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  26. I missed reading your posts! I've been MIA for so long...traveling and being sick! Thank you so much for sharing your heart and journey, I can't wait to read more! You are so beautiful and I'm so grateful you use this pedestal to proclaim the Hope that Christ offers! Love ya girlfriend!

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  27. Wow, what a story. I have a friend that has lupus… you're so brave to share your journey. I know God will do great things and be glorified through it all! What a beautiful heart you have!

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  28. love you so!!! I'm sure you looked awesome covered from head to toe and wearing a floppy hat. I'm sorry I keep forgetting to write you back via Facebook (gosh I'm awful!!). MY health has been so bad these past few weeks that I can't get much done. BUT David and I are heading to his lake house for a WEEK after christmas where we will do nothing but vege out. they do have the inter webs though, sooo I'd love to chat then?!?

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  29. Wow. I can't imagine having to go to such extremes to stay out of the sun for fear of a Lupus flare. That is intense and so sad. That's like asking you to hide yourself from the world! Can't wait to read part two and see what Jesus has done for you! :)

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  30. First time visiting your site and I'm a fellow blogger - one of my readers referred me over to you after she read my post announcing that I was diagnosed with SLE recently. Would love to hear more about your journey and am finding comfort in reading your story & knowing that I'm not alone. xoxo

    www.pennypincherfashion.com

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  31. Katie - I've stumbled upon your blog many random times and have always loved it, but somehow never happened upon the informatino about your lupus.

    Reading about your description of waking up one day feeling paralyzed and in pain was like looking into my own life at the moment I realized something much more serious than a little joint pain here and there was going on.

    As you clearly understand, the day you receive a lupus diagnosis is one of the most horrible days imaginable. It's such a serious disease, but when they present it like there's no hope left for a normal life, it really does make you want to give up.

    I am glad that we have both been able to get out there and live life to the fullest, and overcome to some extent, the lupus diagnosis! You're an inspiration!! Thank you for sharing your journey - it's nice to not feel alone in it all!

    xoxo Elle

    https://itsaromanthing.wordpress.com/

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I LOVE hearing from you friend:) Your comment will make my day!