My name is Amie Davis, I’m 43 years old, a wife, a mother and I have Ankylosing Spondylitis, for the 2nd time. If you are reading this, then you are somewhat familiar with AS and are probably wondering how I got it twice when there is no cure. My story is a bit unique but yet so similar to that of many AS sufferers.
At 22, I gave birth to my first son and shortly thereafter experienced swelling in my right knee and a knuckle on my left hand. Skin lesions appeared on my legs and buttocks and then the severe back pain developed. The pain was so intense that I could not stand to be hugged, let alone lift my baby out of the crib. I would crawl into his room, lower the side of his crib, slide him out and nurse him there on the floor of his room.
The orthopedic doctor at our clinic in town told me I had rheumatoid arthritis and referred me to the rheumatologist that only came to the local hospital once a month. It was he who, despite my being HLA-B27 negative and a woman (being told it was a man’s disease), diagnosed AS. Little did I know at the time how unusual that was, when typically people fight for 10-15 years for a diagnosis. I was given several medications, a couple pamphlets and sent home with orders to stop nursing my baby immediately, sleep flat on my back without a pillow and the assurance that if my spine fused, the pain would stop. I was a good girl. I asked no questions. I simply took upwards of 15 pills a day and did what I needed to do to keep my household running while working fulltime.
That period of my life is a blur. Physically, mentally and emotionally exhausted I kept pushing along, day by day. I don’t recall when the symptoms disappeared, when I stopped slathering Icy Hot on my knees, when I quit taking handfuls of medication but I’m fairly certain I battled AS for about 3 years. I’m sure I worried that the disease would hit hard when I was pregnant with my 2nd son but with him being born 7 weeks prematurely during an emergency C-section, I believe God knew I couldn’t handle an AS attack as well and blessed me by allowing the remission to continue.
As it does, life went on. The children grew, the marriage failed and my experience with AS became a distant memory. There were other health challenges; surgery to fuse the subtalar joint in my right foot, Grave’s disease requiring radioactive iodine treatment, IBS and plantar fasciitis.
Three years ago I met a wonderful man and we were married which brought about many of the major stressors in an adult’s life. We experienced the stress of blending 2 very different families, moving from my home, my oldest son leaving for college, loss of my job, financial crisis and now, a serious, life-altering illness. The reprieve is over, my AS is back, with a vengeance.
It took me awhile to realize what was happening. I kept chalking up the aches to getting old. I complained to my husband that he had the most uncomfortable couch in the world when I couldn’t stay in one position for longer than 10 minutes. Our mattress must be old and needed to be replaced when my back and hips hurt every morning. I work with autistic children and as they became harder and harder to lift, I convinced myself they were only growing bigger. When I couldn’t open a jar, it was because I hadn’t been working out. Needing to rest while climbing the stairs to our bedroom proved how out of shape I’d gotten. It was the searing pain in my neck that finally sent me to the doctor. He decided it was a herniated disc, prescribed Tramadol ordered a neck x-ray and told me to come back in a couple weeks if it didn’t get better. It didn’t. While the neck pain became less intense, the pain in my upper and lower back increased. My ribs hurt and deep breathing is impossible, the fatigue, debilitating. I used to work 40 hours a week, now I work a 3 hour shift, 3 days a week and cannot handle any more. Typically 2 events a day is my limit. The perfect day is one where I don’t have to leave the house.
I continued to push my doctor but he refused to believe I was ever diagnosed with AS. He kept arguing, “But your back is not fused.” The neck x-ray showed no damage and he told me the lumbar x-rays and my bloodwork were normal and since I was HLA B-27 negative, it couldn’t be AS. Having little faith in him at this point because he simply was not listening to what I said, I requested copies of all the test results. The lumbar x-rays show sclerosis and sacroiliitis and the bloodwork flagged 3 areas, including low white blood count and high C-reactive protein, both commonly found with autoimmune diseases. How is this considered normal? That was the final straw and I’m now seeing a rheumatologist in town. Though he has an awful bedside manner, he at least listens to what I say and doesn’t make me feel as if I’m making this up. He ordered a bone scan and diagnosed me in the beginning stages of spondyloarthropathy, which appears to be undifferentiated spondylitis. It’s a start. I also tracked down the specialist that saw me 21 years ago though he can’t see me until January 2012.
Meanwhile I attempt to adjust to a new way of life. I try not to beat myself up for being weak or lazy, to not feel guilty if I need to take a nap or cancel an evening outing because it’s just one too many things that day, but still there’s that voice telling me I’m a wimp, suck it up, everybody hurts. After playing the roles of mother, father, husband and wife, I’m learning to let my husband do things for me without feeling like I need to reciprocate or that I’ve become a burden. He didn’t sign up for this. He thought he was marrying a healthy woman. These are my own thoughts, not his as he assures me that he loves me no matter what and that he looks forward to taking care of me because I so rarely accept help.
Last year I became a reiki master and am focusing on using positive thoughts and energy to handle pain and stimulate my body to heal itself. I use Facebook and Twitter to raise awareness and offer support to others dealing with chronic pain and illness. I’d also like to host a monthly meeting for suffers in my town.
His timing perfect as always, God waited until I was most capable of handling life with AS before ending my remission. Everything happens for a reason, doesn’t it?
Beloit, Wisconsin United States of America