My name is Debbie Kenney. I’m a 58 yr old wife, mother of 3 and grandmother of 8. I was diagnosed with AS in my early 30’s after a lower backache that just wouldn’t go away. I am writing this at 2:00am from the living room recliner because the pain in my thoracic spine is preventing me from getting comfortable in bed.
I’ve been on every drug therapy regimen available with no satisfactory results. In November of 2011 I had to stop NSAIDS due to a severe GI bleed that nearly cost me my life. I ‘tough it out’ without meds now because I have no other choice. When I’m desperate I take 1/2 of an Aleve and keep my fingers crossed.
This autoimmune disease seems to run in my family. My Father was discharged from the Navy during WWII because his back pain prevented him from carrying out his job. He wasn’t diagnosed until he was 85. His Father suffered from back pain. Two of my daughters and at least two of my grandchildren are positive for HLA-B27.
AS has cost me my career. I am a retired RN-retired because I could no longer perform my duties due to the pain and fatigue. Fortunately I was able to obtain SS Disability, after being turned down once then hiring a lawyer. AS has affected my joints systemically, I have two kidneys full of Uric Acid stones, an occasional irregular heartbeat, constant overwhelming fatigue and crazy things like deeply split fingernails and gray teeth that the Drs can’t explain. I’m loosing my independence slowly but surely. The future scares me. My husband has Parkinson’s Disease. How will I take care of him? I don’t want to be a burden to my husband and daughters. I don’t want to be wheelchair bound in my 60’s. I don’t want to spend the rest of my life in pain.
Maryland United States of America