A.S. Face 0928: S. Elizabeth Smith
S. Elizabeth Smith
Diagnosed AS Jan. 2004
In 2000 at the age of 42 I set a goal for myself to enter and complete a triathlon. I had been an avid cyclist for a few years but wasn’t in what I would call “great shape”! So I started running, cycling, kayaking & swimming, doing 1 or 2 of those things every day. In 2001 I entered the Danskin triathlon that took place at Disney World, it was only open to women and that made it less terrifying for me! Well I did it and survived, I cried as I ran through the finish line, I couldn’t believe I had actually done it! That event gave me the courage and self esteem to start entering 5 & 10k races every weekend as well as doing another triathlon and the Disney half marathon. I was in the best physical shape of my life but was growing increasingly unhappy in my marriage, in Nov. of 2003 my husband moved out. In Dec. my beautiful black lab Jake died, I felt like my life had become a country song! In Jan of 04′ I woke up one morning and literally could not move, I was terrified and completely alone. After what seemed like hours I was able to call my parents in NY and through my tears asked my Dad to come down and help me. The journey began….
My toes, ankles, knees, hands, wrists had tripled in size they were so swollen. Every joint in my body was in excruciating pain, my back felt like it would snap in two, I couldn’t walk. The first doctor I saw was an Orthopedic, the waiting room was packed and when the woman at the desk saw me in my wheelchair she ran out and brought me back to the doctor. Just having to take X-rays was beyond painful. After hearing my story the doctor said I needed to see a Rheumatologist right away and sent me over to his office. This doctor drained a ton of synovial fluid out of both knees, took some blood and gave me steroid injections. I was sent home with prescriptions for anti-inflammatories & more steroids and waited for the results of my blood work. At my next appt the doctor said I ” probably” had psoriatic arthritis, I said, but I don’t have psoriasis, his reply was ” don’t worry you’ll get it”! Needless to say I started looking for another doctor and found someone who was highly regarded by his peers and had written several books. He never could come up with a specific diagnosis and also sent me home with more prescriptions. I decided I would do my own research and at the suggestion of a friend made an appt at the Mayo Clinic. By the time I was on my way to Jacksonville I was 99% certain I had AS. I had been tested for everything from Lupus to Lyme but never for the HLA-B27 gene. The doctor agreed with me and had me tested for it, success at last, I was positive for the gene. At this point I realized I needed to move back to NY to be close to family for the support I knew I would need to fight this battle. I found a great doctor and started taking Enbrel, it worked well for about 2 years until I had a positive ppd test and was told I had to stop taking the injections. 6 months later I woke up with a horrible pain in my left eye and knew I was now going to have to battle Uveitis, it took over two years to get it under control and my Rheumy and eye doc worked hand in hand to help me. They consulted with a Pulmonologist about putting me back on biologics and determined it was necessary in order to save my eye sight. I have been on Humira weekly for 2 years now and as of 3 weeks ago my eye has been “quiet” for the first time since 2011.
In June I applied for SSD as I can no longer sit at a computer all day due to 3 herniated disks of my c-spine and 1 of my t-spine. I’m told surgery is the only fix but am reluctant to do it. So I take each day as it comes and take great solace from all of you. As I said to Cookie, I never knew anyone else with this disease and now because of her kindness, determination and courage know 937 other folks that understand the pain and the toll AS takes on our lives. From the bottom of my heart, thank you Cookie for everything, you are truly remarkable.
Sue aka S. Elizabeth Smith
New York, United States of America