A.S. Face 1514: Lillian S. Frederick
As a teenager I ran track, played sports, was active but I always hurt. My back was problematic. I was hospitalized in traction in 1981 and again a few years later. In my work career I was a Sr. Word Processing and Desktop Publishing Specialist and I had Carpal Tunnel syndrome in both hands. In 1993 I had surgery in my left had, it returned three years later and I never had surgery in my right hand ‑‑ left hand recovery was too long due to underlying arthritis. I was able to retire on disability under Worker’s Comp in 1998. This was before everyone had a computer at home.
Unknowingly, I also had cervical spine compression. In 2001 my gait changed, I was losing the ability to walk, my body was becoming numb and my bladder was shutting down. I had to have emergency spinal surgery for a severe spinal injury. What injury? I had not been in an accident nor had a fall. After a few months my surgeon released me but wanted me to be in the care of a rheumatologist because I also had Rheumatoid Arthritis, Degenerative Disc Disease and Spinal Stenosis. My Primary Care Doctor referred me to a Rheumatologist. After prescribing two medications, she asked me to work with her for six months. I agreed. She suspected AS (but did not tell me) and went looking for it by putting together EVERY X‑Ray that I could find from over the years. I had many (back, neck, chest, hands and feet). Using blood tests, scans, MRIs, etc. she took her time, did research and finally gave me a diagnosis. She told me that AS is not usually “looked for or suspected” in women or even in men and it is often found in men when they have had an accident. I did not get the AS diagnosis until she had been treating me for more than two years.
I was treated successfully with Remicade infusions every six to eight weeks for five years without side effects or issues. In December 2013 the infusion landed me in the ER and admittance to the hospital in intensive care for three days. After a brief break, I had the next infusion in March 2014. Same side effects (electrolytes depleted and my heart compromised) but this time, I passed out, had a fall and broke a bone in my left foot. Another intensive care hospital stay in addition to four weeks in a rehab facility. I can no longer take Remicade and so far another biologic has not been determined to be beneficial to me. Between the two Remicade episodes, In January 2013, I received the diagnosis of Myositis (inflammation of the muscles) so I’m on a high dosage of Prednisone but I hope to be completely weaned from it by July 2015.
I take 8 different prescription meds for RA and SA and I have had three spinal fusions. My walking has become extremely problematic and my body is always in pain but I try to find beauty in every day and joy in being alive.
Maryland, United States of America