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

2 Responses to “A.S. Face 2203: Linda”

  1. Dear Linda,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. 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.

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