January 28, 2013

Canes, Planes and Automobiles.

I am so thankful, so grateful, so happy.  I haven’t felt happiness in quite sometime.  DBS the friend you love, the friend you adore when everything goes according to plan but can also be the friend that fools you, the friend that you thought you could count on to get you places and doesn’t, the friend that lets you down and hurts you.

DBS.  Dystonia.  So many lessons learned, so many things this disease has taught me, some good and some bad.  For the last 6 months, I haven’t been myself, I have been super sad, highly volatile, and quite frankly hurtful to the ones I love the most.  I didn’t understand why this was happening and my neuro said, its okay women your age suffer from depression and yet I knew that wasn’t right, but she was the expert.

Then my battery started heating up in my chest…

Then my walking started to fail…

Then came the cane…and I felt my world that I knew for the last 7 years slowly start crumbling…

But then I went to see one of my old docs and he said lets rewire you…and we did…

on January 18, 2013…I got my life back, I got my smile back, I felt the darkness go away and my can do attitude came back…I remember opening my eyes and the Medtronic rep saying “Carrie, we found an open circuit”.  I just started to cry, when he asked “why, the tears”?  I knew those were tears of relief. tears of happiness, tears knowing that I finally was seeing the light and happiness again, comfort in knowing I was right.

7 days later post rewiring and battery change, I am happy to say I walked 2 miles and smiled.  I will never take a step for granted ever again, I will never assume this miracle I have will always be here.  This was reminder to enjoy life, to walk every step and smile every day.

10 days later, I put on my favorite heeled boots I first bought 7 years ago when I realized I could wear heels again and smiled.  I sent a letter to the person I hurt the most and knew I was forgiven because he saw someone he once knew return when I opened my eyes after surgery.

10 days later, I am relieved to know me again and be in love with myself, my dystonia and my wires again.  But what I am most thankful for, is my family and my friends that have constantly supported me on this journey.  My love to all of you!  Oh and “candy cane” – you taught me many lessons, but for now its back in the closet for you, I hope that I don’t see you for a really, really long time.

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3 responses to “January 28, 2013

  1. Carrie, I’m thrilled that your issue turned out to be one of faulty circuitry. Each of us with Dystonia has our own unique journey but we find tremendous support in our community of friends. Please enjoy those heels for both of us. I find happiness with my Aerosoles (lol): http://dystoniamuse.com/2013/01/03/shoe-fetish/. -Pamela-

  2. Janet Hieshetter

    Carrie,
    This is great news! Thanks for sharing it. I am so glad you are feeling better.
    With admiration,
    Janet

    Janet Hieshetter
    Executive Director
    DMRF
    1 E. Wacker Drive, #2810
    Chicago, IL 60601
    312.755.0198
    http://www.dystonia-foundation.org

  3. You inspire me more than you could ever know. xo

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