A.S. Face 0478: Eleanor Jampen

A.S. Face 0478: Eleanor Jampen

Hello there, My name is Eleanor Jampen, and I live near Calgary, Alberta, Canada.  I was diagnosed with AS, finally, March 30th, 2011. I remember the exact date, cause it just so happens to be my son’s birthday. I had been having lower back pain for a few years and was sent to every kind of dr. who just sent me for more and more tests. At one time, I was being sent for blood test a few times a month! I had bone density tests, bone scans, regular xrays and finally a MRI. They honestly couldn’t see anything, so they thought I might be getting osteoporosis. Was referred to a specialist that put me on some calcium drops to help.  Didn’t help. In the meantime, my walking was getting worse. I remember sitting in the living room looking at the stairs that lead to my room. I would wonder how I was going to make it up there without crying or crawling. It was horrible. Every move I made hurt more than I have ever hurt before. No one was telling me what was wrong and I was sinking deeper into a depression. What was the point of it all when I couldn’t walk more then a few steps without wanting to scream. I tried doing aqua fitness, but found the movements in that painful. Sneezing was the worse. I would try to hold it off, but that made it worse. My poor kids didn’t know what to do and neither did my husband. We all felt helpless. I saw a Rheumatologist that said I didn’t have A.S. Which I was grateful cause I read up on it. It was all a huge mystery to everyone. As it turned out, it did show I have a fracture in my upper back. I was told to STOP LIFTING!! I am on a waiting list for surgery to repair that. In the meantime, I still couldn’t walk. Finally, my doctor sent me to an internist. Maybe they could help. I figured, I had checked off most of the specialists in the city any, why not add one more to my list. When I went in to his office, he has me do simple movements. Then he had me stand against the wall. How crooked could I be? He told me “i have a diagnosis for you. You have Ankylosing Spondylitis”. Wow. would you believe all I could say was Oh.  I had waited 2 years to hear someone say something like that. No more testing, no more blood work. They had a diagnosis for me. He made an appointment to my new rheumatologist. (the previous one retired).  When I left his office, I sat in the car and cried and cried. I was both relieved and scared all at the same time. That was the hardest I have cried in a long time. So much relief and pressure gone!  At my appointment with the Rheumatologist, he suggested I give Simponi a try. It would be a monthly injection.  I have been on this injection for a little over a year now and I can walk!!! The stairs are no longer a hardship. I can’t walk miles and miles and if I push myself to do that, then I will pay for it. But, the pain level has gone down so much now. I feel human now. I am now living it as best as I can. I had to quit my job due to the upper back fracture. It was just too hard.

Now that I know what I have, I have been sharing it with family members. As far as I know I am the only one that has been diagnosed with it.  It was brought to my attention that my grandmother suffered severe back/joint pain that would sometimes have her in bed for days. Sad to think there was no help for her other than pain meds. I am convinced she must have had AS. I guess that is my story. A bit jumbled, but that’s it in a nutshell.

Alberta Canada