A.S. Face 2203: Linda
My name is Linda and I am a face of Ankylosing Spondylitis. I am 72 years old, live in suburban Detroit, Michigan and am blessed with a son, grandchildren, and great grandchildren. I retired at age 67, after working 46 years. I didn’t really want to retire, but I no longer had the strength for the daily battles.
I have lived with the complexities of this disease all my life, along with several other conditions. From the time I was born I was unable to tolerate most foods. I eventually went on to live a fairly nor-mal life, albeit one with pain and discomfort. My father would rub my legs and back in order to ease the pain enough for me to fall asleep. I was never given any “passes” though. No one ever believed that I was really hurting. Thought I was just making it up. When I did go to the doctor, and they would ask what hurt, I wanted to say everything! Of course, I knew they wouldn’t believe me either, so I would say my hip, or my knee, or my foot, etc.
My serious pain and mysterious issues started in my 20’s. I was told more than once that I had Rheumatoid Arthritis or Lupus, even when the tests came back negative. They said I would not live more than five more years. Made me so angry that I didn’t see doctors except when I had to. I had a son to raise and had no intention of leaving this earth until that was done. I seemed to always have one infec-tion after another – kidney, respiratory, throat, ear, intestinal, female related, etc. Had a rare virus which resulted in hepatitis, meningitis, and encephalitis. Fatigue, low grade fever, joint and muscle pain were my constant companions. Following doctor’s advice, I was taking 13-15 aspirin a day, plus other self-help remedies, which only resulted in many, many ulcers and being medicated for that.
I discovered that I had Celiac Disease when I was 39, purely by accident. I was having problems with my neck and the doctor showed me my x-ray, saying I had premature osteoporosis. He said I was way too young and had no clue why I had it. He gave me a script for Motrin and sent me home. I start-ed researching premature osteoporosis, and found out that it was a precursor for Celiac disease. My mother had Celiac (also diagnosed late in life) but was soon also diagnosed with dementia, so I hadn’t even thought about the hereditary implications of Celiac. I was then tested for Celiac with positive re-sults. Went on a strict gluten-free diet and was much improved in that area.
I have had various medical issues over the years; some which I now realize are undoubtedly re-lated to my Spondylitis. Bone and muscle pain of course, unending fatigue, Reynaud’s syndrome, ten-donitis, bursitis, trigeminal neuralgia, vertigo, surgery for two kinds of cancer, cramping everywhere, many allergies and reactions, flu-like symptoms, vitamin deficiencies, psoriasis, bone loss, many bone spurs, torn ligaments and tendons, stomach and intestinal conditions, and aortic insufficiency, to name a few.
I was diagnosed with Spondylitis in 2011, when I was 64 years old. The Rheumatologist wanted to put me on Methotrexate or some other AS related medicine, but I felt that at my age, and in my condi-tion, the risks outweighed the benefits. With all my issues, she was cautious about treating me. She said “You scare me”. In addition to the aforementioned, I have developed type II diabetes, emphysema, iron deficiency anemia, high blood pressure, gastroparesis, diverticular disease, GERD, and hepatocellular disease. I treated myself fairly successfully for many years with ibuprofen, along with my special diet and stomach meds. The ibuprofen has however, taken a toll and I can no longer take it. I now get iron infusions when I need them, take pain meds only (Tylenol and Tramadol), omeprazole, Metformin, Lis-inopril, plus topical medications for my psoriasis. I am now on a walker, and my worst issues are my jaw, neck, hands, shoulders, ribs, back and hips.
Quite honestly, I am amazed that I am still here. I have lived my life with purpose and love, and I believe that has helped see me through the hard times. I pray that I have not passed on the inheritable tendency for this disease to my loved ones. Hopefully there will be new medical intervention for those that come after me. Now that I am older, and tend to look back now and then, it is the joy and love I remember – much more so than the trials and tribulations. Lately, it has meant so much to be able to read the stories of others similar to myself. I don’t feel as alone.
Michigan, United States of America
The Faces Of Ankylosing Spondylitis 
Dear Linda,
Thank you so much for sharing your story with us.
Sincerely Cookie
So much of your story sounds like my Mother’s story. It is a tragedy when a person has to wait sixty plus years for a diagnosis. May you blessed with comfort and strength as you continue this journey my AS sister. Much love and a big warm hug to you.