I must start off, for those of you who may not know, with a definition of Ankylosing Spondylitis.
***(thanks to Michael Smith of Spondyville for this info)
My experience with AS did not start with the typical lower back pain. Several years ago I worked in a small room which was crowded with 9 workers; very tight quarters.
At one time a virus ran rampant through our small work group. Shortly after that, I began having several cases of Iritis (also known as Uveitis. For a while, I even had the inflammation in both eyes. I also had a retinal hole, which was repaired by laser surgery in 1982 by my ophthalmologist Dr. Navin Amin. During a follow-up eye examination, Dr. Amin saw something-and kept urging me to go see a general practitioner. While cleaning up the kitchen after dinner one night my mother, who is a nurse, noticed that I could not turn my head from side to side very much and began to worry. She took me from doctor to doctor trying to discover what was wrong. A round of physical therapy only served to make things worse instead of better. I credit my ophthalmologist and physical therapist and my mother for actually putting all my symptoms together to figure out what was going on. Five years of visiting different doctors brought no answers. Yet I still had cases of iritis and back pain and could not move my neck in normal range of motion. Finally I found and made an appointment with Dr. Owen Kantor, a Rheumatologist at Barnes-Jewish Hospital . The hospital is a teaching hospital of Washington University Medical School in my home city of St. Louis, Missouri. The school and hospital have the reputation of being one of the best in this Midwest area of the country, always getting in on the latest in medical advances.
Today, I can still remember my husband Ernie’s reaction when Dr. Kantor handed him a booklet about AS. He started flipping through the booklet, and after a few minutes he exclaimed, “This booklet is all about you”! In the back of the booklet was a form to send in to become a member of SAA. I, always being an information seeker, was quick to fill out and send this for.
For several years Dr. Kantor and his replacement Dr. Christine Kovacs followed me faithfully. Dr. Kantor and Dr. Kovacs saw me through many ups and downs of AS, including repeated flare-ups of Iritis. During this time period, I experimented with various drugs to treat my AS, including Clinoril, Voltaren, Indomethacin, Prednisone, Daypro and Vioxx. After several years of experimenting the drugs ceased to offer any relief and I was still having flare-ups of the Iritis. Then, at the suggestion of Dr. Kantor, I began to take Azulfidene. This seemed to keep the iritis from flaring up quite so often. Every time I tried to stop taking the Azulfidene – the iritis would return!
Sadly, Dr. Kantor died of a brain tumor in July of 1997. For a while I lived without seeing a doctor. Who could replace Dr. Kantor? Soon I ran out of my meds and got a really bad flare. I knew that I needed to see a doctor and return to taking my meds. Because of this circumstance, I then became a patient of Dr. Rand Sommer. I decided against visiting another doctor at Washington University/BJC because their offices are on the 16th floor and require a long walk from the parking garage to the office suite. Dr Sommer’s office was located in a medical office building on the 10th floor and could be reached by a short walk from the parking lot and an elevator ride.
Under the care of Dr. Sommer, I have been through many more up and downs of AS and other medical conditions.
At first I didn’t like Dr. Sommer all that much, having been spoiled by how caring and what a good doctor Dr. Kantor was. Over the years, Dr. Sommer has grown on me. He also is a deeply caring physician. This is evident in the fact that he never rushes you through and appointment. This keeps him behind schedule most of the time, but the assurance that he will listen to and devote as much time to you as you need is well worth the extra waiting time. This is also evident in that he recently moved his office from the University Club Tower building in Richmond Heights to the new DesLoge Outpatient Center at St. Luke’s Hospital in Chesterfield, Missouri. The building in Richmond Heights served its purpose while his office was located there. Recently, there has been a lot of retail construction in that area and most of the services which were located in the building (x-ray, lab, MRI, etc.) have moved out of the building. The new Outpatient Center contains most of these services on the same floor, with space for doctor’s offices on the floors above. I remember several years ago, a center like this was just a dream for AS Patients and now it seems that the medical community has caught on to how helpful this type of arrangement is.
Today, my AS is kept pretty well under control with daily doses of Celebrex and Azulfidene and twice weekly injections of Enbrel. I also take other medications for GERD and Hypertension and Depression/Anxiety as well as a multivitamin, B12 and Benefiber. At night I sleep with a CPAP machine to control obstructive sleep apnea. Recently added 2 different nasal sprays for sinus problems. I try to do my stretching exercised on a daily basis, but still struggle with getting enough aerobic exercise. When time and pain levels allow, I do enjoy walking, swimming and riding an exercise bike, some Yoga and working with a Balance Ball.
Many years of living with the pain and discomfort of AS has led me to develop my own bag of tricks for pain relief. I share them in my next post.
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