A.S. Face 1096: S. P.

 

new 1096

I am 24 years old and have Ankylosing Spondylitis. I have exhibited symptoms for approximately 8 years. The crippling pain would leave me crawling to try to get to the bathroom. I would literally get stuck and not be able to move, people thought I was being dramatic, people didn’t believe me. I saw numerous specialists and was repeatedly told I had weak stomach muscles which caused my lower back pain. I used to get miserable steroid joint injections in my sacroiliac joints and eventually had a blood test determining I am HLA-B27 positive. There is no known genetic history, but I do not know my dad’s side of the family. The disease limited me in my tap dance classes and synchronized swimming in college. I used to be very fit and loved personal training, I am now struggling to get back to my active lifestyle. I have been taking Enbrel for about 5 years, but don’t follow the correct regimen because I am so scared of the long term side effects. When I do take it, it does wonders. I realize that if I continue to not follow doctor’s orders the drug could become ineffective. I have this inner battle every day. I hope I will get to see a cure in my lifetime. I hope I will be able to give birth to a child one day. Until then I will do my best to overcome the challenges AS has presented and try to remember to live every day to the fullest. It is comforting to know other people are dealing with the same thing and I wish them the very best.

Pennsylvania, United States of America

 


3 Responses to “A.S. Face 1096: S. P.”

  1. Please remember “fear” can steal the quality out of our life. Just move forward as doctors suggest.
    This s what I do, or try.

  2. S.,
    I know exactly how you feel and are going through, especially about following the “correct regimen” with the Enbrel shot. I go through the same thing with my Humira shot. It is an inner battle.

    I also went through the same thing where I had a hard time just crawling to the bathroom.

    It is good to know there are others going through this same thing, but it would be much better if no one ever had to suffer the way we do. Look up some of the support groups on Facebook.

    Things do seem to get better over time, or maybe I am just getting better at dealing with this. Try to hang in there,
    Josh

  3. Dear S,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

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