I was sent to a chiropractor with back pain at the age of 12 after a car accident. My x-rays showed degenerative disk and spine disease. I was told the degenerative changes were from growing too fast. I was a very active teen and never really sat still. When I had to sit still it was very difficult and uncomfortable. I have always had pain in my back and never had good flexibility so sports were not for me. I loved roller coasters, roller skating, and swimming. I stayed active throughout college. I married and had a child at 22 and this is where my pain started to get interesting.
All three of my pregnancies were very difficult and I was in such pain like never before. They had difficulties giving me epidurals. One birth they gave up on the epidural altogether and another I had 14 injections before it took. Carrying my pregnancies to holding my babies was absolutely miserable. Cleaning dirty milk bottles, doing dishes, and holding a toddler was the worst time in my 20s. I could not bend over to bathe my children so I knew at 29 that this was my last pregnancy.
Fast forward through motherhood to now and I have progressed into advanced AS. I am 44. I currently use a cane and have lost an inch and a half in height. I was officially diagnosed about five years ago. I diagnosed myself. I had to fight for a rheumatologist to recognize my disease. “The best Rheumatologist in Dallas” diagnosed me with a different condition. I am HLAB27-. I had to fight for the correct diagnosis from them. It was not until I had radiographic evidence in my SI joints that it was written down and officially diagnosed. This was despite my MRI and CT-positive bamboo calcified spine and inability to bend over. I have seen a few docs since then, to say the least.
I work part-time when I can with my petconomy business. I have a supportive family.
Pain is too often overlooked and dismissed. Pain is destructive to us not just painful. We must be our own advocates and have someone to advocate with us. Shop around, get many answers, and ask lots of questions. The more you know, the more you know.
