Friday, June 3, 2011

Accepting the Answers

I've been avoiding this post. There are a million things rushing through my head but not a single word I want to say. When I started this blog, I couldn't wait for the day I would finally receive my diagnosis. I thought it would be so exciting. I would breathe a sigh of relief and share with you the problem, the solution and the 10-step plan to be good as new. We would all sort of celebrate and reflect on how crazy this year has been. I wasn't ready to talk about a chronic disease. I wasn't ready to say there is no cure. I can't accept that "treatment" only helps to slow the disease down.

There's a lot to wrap my head around. I'm still trying to process all of this and I know I'll be tossed between tears, anger, strength and hope in the days and weeks to come. For now, I'll share my heart and try to put this new reality into words.

I have ankylosing spondylitis. It is a chronic inflammatory disease that affects the spine and sacroiliac joints. Basically the joints and ligaments along the spine become inflamed, creating pain and stiffness. Eventually, the joints and bones fuse together. AS is a systemic disease that can also affect the eyes, heart and lungs. Nobody knows what causes AS and there is currently no cure. Treatment focuses on reducing pain, preventing deformities and slowing down the progression of the disesase.

Unfortunately, my xrays and MRIs show that I already have significant damage to my hips, pelvis and spine. I don't know exactly what that means yet except that it explains months of suffering. There will be more tests and discussions in the days to come. In the meantime, my treatment entails giving myself a shot once a week for the rest of my life, or until God or science comes up with something better. I made the mistake of googling the medication I'll be on. Main risk: cancer. Right now I don't exactly have a choice because we need to control the disease from moving so quickly. It's ironic how you have to chose between slowing one disease down and possibly injecting yourself with another.

So here I am - thinking about the present, wondering about the future and trying to settle into a new normal. I won't take this sitting down (or hunched over). I will tear this thing apart and learn everything there is to know about this disease. I'll fight for each and every day because the alternative is just unacceptable. There's a long road ahead. I have no illusions that it will be easy. All I know is that I am strong, God is still good, and this story has just begun.

Thank you to those who have walked beside me from the beginning and to those who have just joined along the way. We all have our own roads to journey, our own challenges and triumphs. I am thankful and humbled to walk with you.


With Much Love,
Kim

14 comments:

  1. Kim- I admire your strength through all this. You are so full of life and energy.

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  2. We're praying for a miracle! XO Shyrah

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  3. I'll be praying for you too.

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  4. Hey Kim,
    I am going to send an email to your yahoo account. My wife's cousin has this same condition.

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  5. Kim, Kim, Kim...can't get you out of my heart and mind. You show amazing strength that I know will be tested along this bumpy road. Your writing is incredible and lets us all understand more fully what you are going through. Thank you for taking the time to include us.
    Love and gentle hugs,
    Grandma Jane

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  6. Kim, I think your attitude will go a long way towards recovery. Your Grandma Jane, has told me several times how you never complain and how amazingly strong you are. I have no doubt you will lick this thing with all the love that surrounds you and your positive attitude. You, Jed, and your kids are in my thoughts and prayers. xoxoxoxo, Jeriann Edwards

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  7. Your MIL shared your latest post, and I'm hoping "JHew" will have some good advice. I wish I could put my arms around you and make it better, but I know you're doing all you can, and your attitude is so incredible! Having that adorable (and adoring) husband of yours to help is a wonderful boon as well. On a COMPLETE side note, if there is anything Grandpa can bring over from us when he visits, let us know! Love, Barbara

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  8. Bless you, Darling Girl, for the courage and strength you continue to show during your day to day awareness and acceptance of what is happening to you and for sharing this with all of us.
    You are constantly on my mind and in my prayers, and know you have a loving family and countless friends who keep you on their minds all the time.
    Wishing you comfort every day, and much love and support, to you and to your beautiful family.
    Love, Aunty MJ

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  9. Kim...I took some time early this morning to read, and catch up on what you've been up to. It was so absolutely refreshing to see you again, and I'm reminded of the light you bring to any room. Until today, I didn't know...really didn't know. And now, I'm taken aback by your grace and wisdom...the fire in your belly. I'm glad we share a time zone and won't let years go by ever again. Love you...Mel

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  10. Thank you for all the lovely comments.

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  11. Kim, my prayers are with you. You're phenomenal--strong, positive, and faithful. Keep fighting the good fight. Always keep the dynamic sparkle you have.
    God bless!
    Love,
    Karen

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  12. Kim, I'm so sorry. I know how it feels as I was just diagnosed about 10 months ago.

    My father has it too.

    I'm thankful you found my blog & that we can be friends on this journey together. Two writer-mamas with two baby girls each and incredible husbands and an incredible God, who also share a disease.

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  13. Kim~ Just found you...I was a friend of Sara's so when I read you have AS I wanted to read your precious story... Sending you love and hugs~
    xo
    Robin
    All Things Heart and Home

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