A.S. Face 2072: Debbie

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I’m Debbie. I’m a normal stay at home housewife. I homeschooled my Autistic daughter all the way through highschool.

When she became independent enough I decided I needed some “me” time and I took up dancing at the age of 49. I was about a year into my aerial athletics when my symptoms began. I started to feel weak like the flu, run down and no energy, I had pain in my neck, traps and elbow and I was losing grip strength (which is incredibly important when you are hanging upside down from your hands \uD83D\uDE02).
I went to my primary care physician’s assistant and she dismissed me with out even an X-ray. She did preliminary blood work which came back within normal limits so she said I was fine but she could refer me to a rheumatologist “if I wanted to make this a big deal”. Well, turns out my daughter works for a rheumatologist so he ordered an MRI immediately. The results came back that my C 5/6 had fused together and pushed into my dura mater and punctured it. I was sent to a Duke Neurosurgeon and had an emergency ACDF. My neurosurgeon dx’d me with AS.
The diagnosis of Ankylosing Spondylitis was put on my chart and I was never told about it. I had to ask about it. PCP said that it was because the C5/6 fused together but still to this day no one has done the blood test for AS. My rheumatologist ordered a Dexa and I do have osteoporosis.
Anyway besides all that I dance to try to keep my mind off of everything else. It is my escape. I find that the more active I am the less I hurt (for the most part). I have to find the happy balance of not “over doing it” ~ gee I hate that phrase!
I am a competitive an aerialist, which means I do Pole and Lyra, some trapeeze. Silks is waaaay too dangerous for me. I also love hula hoop.
In February I competed in my 3rd National Competition and came in first place in my division. My program was completely inspired by all of YOU. I am a person of Faith and as they were introducing me, I stood backstage and I prayed. I prayed for all of you, that you would be with me on stage and that I would represent us and make people know what it’s like to battle and fight like we do. God heard me and allowed me to have amazing energy.
So today I go back to battling. Trying to find the balance. Thank you all for letting me share.
North Carolina, United States of America

3 Responses to “A.S. Face 2072: Debbie”

  1. Dear Debbie,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. Thank you for sharing. It is amazing what you can do! I am truly impressed. Welcome to our Group. It is a very safe haven to express yourself. And many thanks to Cookie. Our fearless leader. Much love 🙂

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