I am a mom, a grandma, a wife, a caregiver and a patient. These things both define me and yet make me different. I was first diagnosed with AS in 2002. In hindsight I have experienced problems with flexibility and inflammation my entire life. I was never able to do sports or gymnastics like my friends were while growing up. To me, finding love of life is not limited to these things. I love God, my family, nature and all the beauty that living brings. Even if living means pain and sickness, I am thankful for the living that allows me to enjoy while I still can.
Since 2002 I have been on every NSAID there is. I can no longer take them as I have eroded a hole in my esophagus. I have had my left hip replaced and my neck has fused. I have tried injectable drugs and infusion drugs with some relief for time, only to then experience disease progression.
I have worked in the oncology field for more than 20 years, and I believe that having AS makes me a compassionate and empathetic caregiver. It also makes me realize many more humans experience worse than me on a daily basis.
No matter how bad the pain is, or how completely awful I feel. My joints can swell, become stiff and I could be completely sick and unable to breath. None of these things compare to the feeling of being alone in my illness. Having no one to understand or show mercy to me. Growing older and frailer by myself; these are my greatest fears.
I often joke that when I am unable to work any longer, or care for others and myself, I want to sit in a comfortable chair, in the sun in a flower garden, surrounded by butterflies and wildlife. I want to know that my family loves me, that they know I love them and that I have always done the absolute most and given them my all. It might sound like a fantasy, but there are days this quiet place in my mind is the only relief from the pain. Solace and peace with life can be the best medicine.
Nampa, Idaho USA