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

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
I went to my primary care physician’s assistant and she dismissed me without 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 “overdoing 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

One Response to “Debbie”

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

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