A.S. Face 1151: Ruth Anne
My name is Ruth Anne and I have Ankylosing Spondylitis
My journey with AS started when I was in my teens. I always had problems with my back, hips, knees and ankles. There would be days I would wake up and be unable to move but by mid afternoon whatever it was would go away. I just kept thinking to myself I must have hurt it or hit the joint in someway or another to cause the pain. I would occasionally get pain in my knees and ankle that wouldn’t go away and the doctors would tell me to rest the joint and use crutches because it’s inflamed. I remember being back and forth to the doctor and would end up on crutches or have some joint wrapped to keep it from hurting every few weeks and would constantly complain about back pain! I ignored the pain as much as possible and tried to keep going to reach my dreams. I became a nurse and worked in the field for several years before the pain in my back in hips started to get unbearable. I kept going to the doctor and kept being told you have inflammation in your hip and back (but you shouldn’t) and it should go away and take it easy at work. I remember waking up one day and not being able to move or even get out of bed and that’s when I started to realize something was really, really wrong. I also noticed that I was having trouble getting moving in the mornings and that seemed to get increasingly worse and I just attributed to other medical issues I had. For several years I tried to continue working and keep the pain as hidden as possible. I knew I could no longer ignore the pain when l had trouble climbing my own stairs to my apartment at the end of the day. I had to eventually leave my career as a nurse because I could no longer handle the job, I couldn’t lift patients, I couldn’t even push the med carts and I was definitely moving a lot slower than I used to and still had no idea why. I finally got one of my doctors, an endocrinologist to see that obviously there is a definite problem here and so began my journey to a rheumatologist. I saw my rheumatologist for the first time and at first he said wow your joints are tight and your inflamed everywhere but I’m not sure what it is you have. After several years of no treatment and not knowing what it was I had my mobility started to decline. I could no longer climb stairs, I could no longer even walk a block or stand for any length of time. About 2 years ago my rheumatologist said all your x rays and CT scans say the same thing and we believe you have Ankylosing Spondylitis. I am now on Remicade every 6 weeks and take medication for pain because as we all know AS is a horribly painful condition. I have a power wheelchair, still can not do stairs (or very many) and still can’t walk a block. Unfortunately because my disease was left so long untreated, they are not sure I will ever reach a remission. My one wish is that when someone goes to a doctor and the doctor sees constant inflammation in joints and the spine that they recognize it and send that person to a specialist so they are diagnosed earlier. I continue to not be able to work but I volunteer as a Scout Leader and Group Commissioner in my local scout group and love it. I hope for the future they will find a cause and a cure and that the new generations of spondy’s don’t have to suffer nearly as much as we all do! I am hopeful for the future even though I have AS and I don’t dwell on what will happen tomorrow, I live each day as it comes and cherish each pain free moment I have and hope that there will be more!
British Columbia, Canada