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

5 Responses to “A.S. Face 0478: Eleanor Jampen”

  1. oh I so understand your story is almost like my story I am so sorry. If you ever care to talk look me up on face book 🙂

  2. “So much relief and preasure gone…” you’ll remember what you were wearing that day for the rest of your life. Once again, the diagnosis is one of the best days of our lives.

    “…that is my story. A bit jumbled…” No Eleanor. Your story, as all the FACe’s stories are, is crystal clear. You’ve been writing it in your head for a long time now…and what a relief to finally tell it to those who understand. It’s another good day for you!

  3. Dear Eleanor,
    Thank you so much for sharing your story with us. Your story was perfect, just what it was meant to be.
    Sincerely Cookie

  4. Eleanor, thank you for sharing your story. I pray I am not out of line here, but I just received my diagnosis two days ago. 14 years ago, I started with lower back pain. I ended up seeing a Gonsted Chiropractor who was fantastic at what he did. I say this because I since moved to Texas and I tried two in the same category…. Gonsted. No help, but then found another that told me the technique is complex. I believe this chiropractor in NY and the new one here in Texas helps in addition with the other things that all of you mention. I am not excited about the DMARDs and Biologics as I don’t do well with Meds. Hypersensitive. But if you need help finding a good chiropractor and deep tissue massage therapy for the inflammation, there may be some help. Again-respectfully so, not all Chiropractors are the same and could make things worse, but a good one might just be a blessing. I go every two weeks now that I know. Keeps my spine flexible and healthy with movement and blood flow. The first step to exercise. Please write me with questions. Love to all of you. You are strong people!!!

  5. Welcome to the group, Eleanor! So glad the meds have helped somewhat. I have recently been switched to Enbrel. Wish me luck!
    Stephania #445

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