A.S. Face 0188: Lisa Lee

My name is Lisa Lee and I live in Aberdeen, South Dakota. I was a nurses aide at the ripe old age of 26 when I started having back pain.  No one could figure out what was causing it, so I pretty much got ignored and called a “whiner” for the next 10 years or so.  I couldn’t do my job any more, so I went back to school and got my degree as a registered nurse.  I worked as much as I could, and tried to just ignore the pain.  As time went on, the pain started getting really intense, and my doctor could tell when it was bad because I started walking funny. I had two children during that time, so my doctor would see me bringing the boys in for their check ups and shots and could tell when my back was “acting up.” After about 5 more years of this, she decided maybe we better do some more x-rays.  Two days later I get a phone call from the clinic, “You won’t even believe this!” the nurse says.  “You have ankylosing spondylitis and the doctor wants to see you right away.”  Well, having been an RN for over a dozen years at that point, I knew exactly what AS was. The doctor “guesstimated” that I’d had AS for 12 to 15 years and my coccyx and pelvis were already fused together.  The first thing I felt was relief!!  Relief that I wasn’t really a whining cry baby and that my pain was legitimate.  That was five years ago.  I’m 47 now, and have been on Remicade for almost 5 years.  Getting my AS diagnosed under control has changed my life.  I used to work part time because it took days to recuperate from working a single shift.  Now I not only work full time, I am also the team coordinator for my sons’ hockey team and fill several roles for our local hockey association.  We are very busy and I tend to take on too much sometimes.  I can tell when I’ve overdone it because my partially fused spine will remind me.  That’s when I need to pay attention and take it easy for a day or two.  I can’t just ignore it and power my way through it anymore, and at my age, who wants to?  I take better care of myself now, and so do my family and friends.  I don’t have an unlimited supply of git ‘er done, but if I plan ahead, I do just fine. 
  Lisa Lee
Aberdeen South Dakota United States of America

4 Responses to “A.S. Face 0188: Lisa Lee”

  1. Dear Lisa,

    Thank you so much for sharing your story with us. It took me an extremely long time to get my diagnoses and when I did, the relief alone to know it wasn’t in my head was remarkable. I was blessed that remicade has given me back a quality of life that I can manage. It is about listening to your body and knowing what you can and can’t do and remembering you are only human! Thank you again.
    Sincerely Cookie

  2. I read so many stories like this. I can totally relate. I am so glad I can read these stories of others with As so I know I am not insane when I get the trrrible pain. Remicade helped me so much until the lung infections came. Maybe when my kids are older and not bringing so many viruses home I will try again. Thanks for sharing your story!

  3. It’s frustrating to be called a whiner. I too have had this for 14 years before diagnosis. I am trying to eat more raw veggies, supplements that a naturopath doc is helping me with. Whatever I can and pray that things can be not so bad as they were when I had this major flare that they finally diagnosed me. Bittersweet..,.. Finding out what caused the pain was good, but taking one day at a time … Some days are better than others.

  4. Thank you for sharing your story….!! You are an inspiration to me.

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