A.S. Face 0490: P.C.


    The beginning stages of my A.S. didn’t start until after I turned 21 years old. I credit the gene, HLA-B27 to have become active due to trauma. My mother died abruptly when I was just 17, then I was involved in a work related accident where I was life flighted to Syracuse University Hospital, I was only 19 and I had just graduated high school! I pulled through but I should’ve died! Then shortly before my 21st birthday my father died in a scuba accident! After I turned 21 I had major pain in my S.I. joints! I could barely tie my shoes let alone put them on for work! I wasn’t diagnosed until I was 26 yrs old. Through all those years the doctors just said I wasn’t getting enough exercise or some other B.S. excuse! I was in construction as an electrician so I know I was getting plenty of exercise! It was a battle with doctors to try and find a diagnosis! It was as if they didn’t believe me and were playing games with me! I wanted to go nuts, I felt like I was because I couldnt find a health care professional to believe me! Finally in april of 2011 I backed my things and moved to Maine. The heath care in Maine was great! The doctors and 2 specialists figured me out in 2 and a half months! It was a relief to finally know what was wrong with me! After all the years of pain and struggling, I knew I had A.S… I never heard of it until my rhumey diagnosed me but he educated me about it and how my life will be and put me on Humira! I didn’t like the side effects from the drug but for the relief I was more then willing to try it! It’s been a long journey up to now. A lot of pain and frustration mostly! I ended up losing everything from A.S. including my career! I didn’t know what to do so I sought for guidance! I was told my many healthcare professionals and family to go for Social Security Disability! I did and it was a loooooong battle! It took 2 yrs to finally win my case infront of a ALJ! The judge agreed to for my approval but she didn’t’ even understand why it had to go as far as it did with me sitting in front of her which disgusted her! I now live with my brother in an apartment we share! Its been a long journey up to this point but now I have peace and I can enjoy life! Thanks for reading! Take care and positive thoughts to all!

Maine, United States of America

2 Responses to “A.S. Face 0490: P.C.”

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

  2. I am So sorry for your losses (you’ve had so many), including your health!

    As you know with A.S., you cannot do things you once could, such as tying shoes, putting socks on (without lots of pain), sit cross-legged on the floor, clip your toenails, pick up stuff off the ground, etc., etc., etc. I wish you the best for your health.

    I am trying to work as long as I can, hopefully for another 7 years. I was diagnosed when I was 49, after being misdiagnosed, and in so much pain for years. I am currently taking Sulfasalazine and Mobic. My rheumy is going to put me on a drug study soon, to see if that works. I have been on Methotrexate, Humira, and Enbrel, but they worked a short time only (the Methotrexate made me feel strange).

    I am able to walk only with the help of a cart to walk behind. I do swim and ride my bicycle for exercise. I sincerely hope that you and your brother have a wonderful life together.

    Again, I am so sorry for your losses (I lost my son who also had A.S. in July 2013). I am originally from R.I., and have been to Maine many times. We moved to Michigan in 1993–he died from cancer. My 3 dogs and my hubby and daughter & son-in-law keep me going!

    God bless, you! Welcome to the A.S. group!!!
    Sincerely, Stephania #445 and Bradley (my son) #1484

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