My Long, Unique Journey

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.

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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)

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AnkylosingSpondylitis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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