My Long, Unique Journey
Last updated: September 2023
I was born with several orthopedic issues including too many bones and no muscles connected to my spine on the right side. I also had spina bifida. The doctors in 1962 told my parents to let the state have me and try again.
I thank God every day that they didn't. I know my childhood was very different from most. I didn't walk until I was 4 years old, and that was after extensive experimental surgeries to remove most of the extra bones, correct the spina bifida, and create muscle tissue so I could have enough of an infrastructure to walk. At that young age I was also diagnosed with arthritis. I often wonder if the tools were available if AS would have been found.
Noone knew how much pain I was in
My parents and siblings put up with me and my needs. I caught every virus that flew around. Sickly is how my records described it. I managed to catch rheumatic fever and had many relapses. I even lost the use of my legs for an entire year. I was tutored at home for second grade. Once I got smart, you know, preteen and teen years, I just wouldn't turn in medical notes to school. I had already lived with discrimination on the playground.
Elementary, middle, and high school friends had no idea how much pain I was in. I just thought everyone had pain like mine. I never discussed it with my parents or my siblings. I wasn't held back from outdoor play at home. At school my friends didn't know about my restrictions after about 6th grade.
Receiving a diagnosis of ankylosing spondylitis
When I was 16 I developed migraines and stiff neck and back. My mom tried all she could until we finally found a chiropractor fresh out of school. He did a full workup including x-rays. He said all of my vertebrae were luxated due to all of the surgery when I was 4. Then the whopper - ankylosing spondylitis. Lots of spurs and partial fusions.
He said it was a boy's disease, patted me on the back and advised me to stay fit and don't get too fat. Yes, in 1978 doctors would say that.
I rode horses, bicycles, and any number of invented sleds when it snowed. I broke a leg, my fingers were always purple from breaks and such. I made it to adulthood, had a few miscarriages, one beautiful daughter who now has her own little girl, I have a nice and long marriage, and once upon a time a career in office work and retail.
Turning 50 and going to the ER
Then I had my 50th birthday and all heck broke loose. My body had had enough. After 2 trips to the ER, I was advised to see a rheumatologist. My GP had overlooked my earlier diagnosis of AS. When the rheumatologist saw me and the images she took, she told me how much my body had been affected by AS.
I was in shock to say the least. At work, I broke some ribs moving ledgers. Ledgers! Back to the ER, etc. I have so many microfractures in my floating ribs and my entire rib cage is fused. My vertebrae are a mess. I have more bone spurs than I thought possible. I am fusing straight which is good for me.
I am more than AS
Fusions, weakened immune system, a body that is attacking more than just my bones, and here I am. I am 57, I love my life when I take care of myself and I take it easy when my AS flares. I fell on some stairs in August of 2019 and shattered my L4 vertebrae and snapped off a piece of my L4 transverse process. I can thank my AS for the fusions in my lumbar area because I would have lost everything from the waist down. So I am learning my new limitations.
I pray, I cry, I laugh and smile, and I pray some more. Above all, I do not let AS have me.
PS, I also have RA, severe DDD, Radiculopathy, Polyarthropathy, and Fibromyalgia. So life is pretty peachy! (insert snark)
Do you notice worsening flares in colder weather?