Marie Claude Lalonde
I was diagnosed with AS in my early 30s when I could not lift my baby girl out of her crib. I had such back pain that my diaphragm would spasm at night. I had seen doctors about my pain for about 10 years. I saw a chiro who suggested my pain was due to physical abuse received at the hand of my father at age 7! My dad never gave me anything but love. I saw another doctor who suggested one of my legs was longer than the other, causing hip pain.
Needless to say I was glad for a diagnosis since it validated that I was not just a whiner. On the other hand, I went through a short period of mourning for my perceived previous helathy self. I had been a professional actress/singer in broadway productions. This explained why some days I just could barely keep up with the rest of the cast. I remember being on stage and having a male actor carry me through a dance sequence when my back refused to move.
I had been a ballroom dancer and had to stop when the basic starting position caused me to groan spontaneously. When I am in crisis, my body can emit scary groans when I try to get up, or turn in a chair. It can be frightening for people around me, and embarassing.
I now own a music academy and have never missed work because of AS. I have been self-employed all my life and just do not miss work – ever. Although my kids and husband have medical insurance, I am not eligible because of my condition. This is very frustrating to me. I spend thousands of dollars every year in prescriptions and never miss work. I do not cost the health care system any more than other people but I am considered by my disease, not my worth.
I would love to try new drugs but cannot afford their prohibitive costs. If I were to ask for Provincial help to cover their costs, my family would have to stop paying for their insurance and also become recipients of the provincial program. This means that tax payers would now be supporting my whole family (not just me). What a wasteful system.
As for my pain, summer seems to worst. I can go through weeks of horrible rib and throrax pain, making breathing and moving very hard. Narcotics do not agree with me, as the next day I feel dopey and have flu like symptoms. Not worth it. I find that Tylenol extra strength and a glass of wine helps me fall asleep 🙂
Life is good and full. I try to be grateful for my great life and not dwell on this inconvenient condition.