A.S. Face 0093: Stephanie

I am Stephanie , I am 49 years old and have AS, I am HLA 27B positive.  I was diagnosed one year ago November 2010.  I have had recognizable symptoms of AS since I was about 18 years old starting with painful, chronic TMJ and hip pain and some manageable joint discomfort.  During my 20’s and 30’s I suffered from bouts of Iritis and some joint pain here and there and continual hip pain.  I always thought it was just me.  At 42 years old I had my first major flare up and became incapacitated.  I was tested for RA, Lupus and a host of other things, not tested for AS or HLA 27B, one doctor thought it was in my head.  The final diagnosis I was told was Reactive Arthritis probably due to an ear ache.  I was put on Celebrex and had steroid shots in my ankles.  After a year I was better.  Then last year it happened again, starting with Iritis, then hip pain, back ache, rib pain and a terrible stiff neck; oh yes and swollen feet, upper thighs, sore knees and fingers.  But the things that I really could not bare were the back and neck spasms that hit me every time I moved, like someone was brutally kicking me every time I breathed.  It just kept getting worse, more unable to move, eat, shower, I was scared to move, it took me at least 20 minutes to get out of bed and get to the bathroom, I had to psych myself up to make a move and prepare myself mentally for the pain.  Never in my life had I experienced anything so violently painful.  I was put on a course of steroids and sent to a rheumatologist. I am now on Remicade and Methotrexate, this combination works really well for me.  I am of course worried about taking these drugs, but I am happy I can get out of bed each day, I need to.  I continue to work, bring up three children and go to the gym, I have a supportive husband.   I am worried about my future and what it may hold and the uncertain path of this disease.  But I try to stay positive, I have plans, I want to go back to college and do a masters.  I want to and will try to lead a normal life.
Cookie, thank you for organizing this site.  It is very interesting to read every one’s story.

Ashland, Oregon United States of America From Britain

3 Responses to “A.S. Face 0093: Stephanie”

  1. Dear Stephanie,
    Thank you for much for sharing your story with us. I, too suffered for a long time with unbearable hip pain, I wish you the best. Thank you for your kind words, it has been my pleasure and honor to do this.
    Sincerely Cookie

  2. Dear Stephanie, I am still seeking the proper treatment. I know the kind of intense sever pain you live with. Even without treatment I only have some pain medication, I still have managed to go to college on line which I highly suggest. I am planning on teaching college on line from the safety of my home where I can rest as needed. I try not to worry about the future but sometimes it creeps in. Just take one day at a time. Today I left my house for a little bit and didnt hurt too bad till this night. So it was a good day. I start a new job soon and I am so scared of how bad I will hurt during and after work but I need to for the money to support my kids till I graduate and get a more suitable job for AS. Good Luck enjoy you good days!

  3. Thanks Carla. I read your story too, you’ve had a tough time. I hope you find the right combination of medication you need. That made a huge difference for me but I don’t know how long it will last. Like all of us I am determined to not let AS destroy my life and will work around it and keep making plans and have dreams.

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