A.S. Face 0039: Jude Chewning
I am a 37 year old mother of two and partner in life to a very supportive and loving husband. My Ankylosing Spondylitis story, like many stories, begins ten years before my 2009 diagnosis. Three years ago I was in the best shape of my life – hiking six or more times a week, working for a non-profit in a position I loved and loving the life I was leading with the family I had made for myself. In a very short time, my AS has taken away my ability to work, hike and, in a very real way, has changed everything about my life.
In 1999, I began experiencing intermittent lower back pain that the doctor diagnosed as being caused by “hard living”. Assuming that everyone has back pain, I didn’t pay it any mind. About every six or eight months I would take a course of steroids and some vicodin and everything would go back to normal. Then in 2006, I woke up with terrible eye pain and sensitivity to light that my regular eye doctor was not able to fix. I found myself at Yale New Haven Hospital early one Sunday morning in the hands of one of the top Iritis/Uveitis specialists in the country. After diagnosing me with iritis and taking my history, he requested a blood test for HLA-B27. He explained the connection between iritis and back pain, which many of us in the AS community know too well. Two weeks later, I learned that I was not HLA-B27 positive and I had a sigh of relief. Over the next three years the episodes of back pain became more and more frequent and difficult to treat. In early 2009, my general practitioner suggested I get an MRI and see a Rheumatologist. A month later, I was diagnosed with AS based on the fusion of both of the sacroiliac joints in my pelvis. I remember calling my husband when I got in the car and saying, “This is ridiculous, I just have a little back pain and they want me to start taking IV drugs! Forget it!”
By the end of that summer the pain had gotten so bad that I was unable to walk. I woke up every morning and had to sit on a heating pad for 45 minutes before I was able to function at all. My job entailed driving all over the state to different speaking engagements and I was no longer able to sit in the car for any length of time. My youngest daughter started half day kindergarten that year and, although it was my job to pick her up each day from school, I could no longer make it from the parking lot to the school. That September we (my doctor and I) started Enbrel, six months later we tried Remicade and a year after that we moved to Humira. So far, nothing has helped.
I really can’t sugar coat the effect this disease has had on my life. The amount of things I can do are limited. I have constant and often debilitating pain in my hands, neck, back, shoulders, hips and knees despite taking morphine and vicodin daily. Sitting for any length of time aggravates the pain in my hips and back while standing and walking on hard surfaces causes neck pain so severe it makes me sick to my stomach. Using my hands is also painful so it is hard to find things to occupy my time. On top of all of that, the smallest amount of activity can and usually does leave me exhausted.
My family and I have recently relocated to an area with a warmer climate and I am excited to get established with a new set of doctors. I am hopeful that the combination of new medications, exercise and a healthy diet will give me my life back. There is no cure for this disease but I am doing my best to enjoy the bad days and celebrate the better days.
North Carolina United States of America