A.S. Face 0093: Stephanie Downer-Mellini
I am Stephanie Downer-Mellini, 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
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
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!
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.