I was so anxious for the Rheumy appointment to get there so I could understand some of these very specific and unsual tests that were ordered. Ones that as a nurse I had never seen ordered. Again, with Shane by my side we walk in for answers.
Dr. Bell greets us kindly and sits down by his computer to pull up my electronic medical records (EMR). He already knew what was going on but took the time to review each lab even those that were borderline normal. He looks me in the eye and says “I think we have figured out what is causing your pain.”
My eyes bugged, my heart skipped and I had butterflies in my stomach. I had seen 3 doctors that truly felt it was the beginning of MS; but it was words only spelling bee members would learn. ANKYLOSING SPONDYLITIS (AS).
What? What is that? I knew from medical terminology that spondo was spine but what the heck? He then told me it is an autoimmune disease on the chromosome that activates in your 30’s usually. He said I was positive for the HLA-B27 antigen.
What does this mean now? How does this change things for my future? I haven’t had much of a life the last couple years I was thinking so is it just going to get worse? Why do all of these questions run through your head but you never ask the? He explains further that AS causes a lose of mobility in the spine (like bamboo spine) as they joints begin to fuse together on their own accord. Also, the larger joints are affected with this disease.
I immediately felt relief and shock all at once. Finally a diagnosis! Yet, it is lifelong and I hadn’t even gotten to the treatment part. My options for treatment were becoming just medicinal as I had done PT, massage, accupuncture, you name it to try to help. So, he prescribed Celebrex for me. Within a week I was up off the couch, even cleaned a tad bit. I could move around and not feel like I had an elephant weighing me down. My dose was increased quickly and so was my Rayos (an extended release steroid).
At this point in time the boys were starting Spring lacrosse and I remember it being such a cold weekend but I wanted to see them play. I hate missing things with my kids. I went, I stood, I sat, but I also cried that day. I cried for the reality that someday I might not be able to turn or twist or even walk due to this disease. Someday I may be so stiff in my spine I can’t travel. So, acceptance was settling in but Iwas still grieving along the way.