Ankylosing Spondylitis Sucks
My story started with being diagnosed with fibromyalgia in my early 20s and then with AS at 29. Both are awful and I got a double whammy. I can handle the fibro, but AS sucks.
I was devastated when I was diagnosed with AS. I was an EMT, a CNA and had just finished all my prereqs for nursing school. Now I was being told I had to get out of the medical field.
AS changed my life
I had to change my lifestyle, my jobs, and my field of study. The doctor tried to give me an open-ended prescription for Percocet and told me I would be on painkillers for the rest of my life. I did not take them. No one told me AS is progressive and to start treating it then.
Two years ago, I woke up on a Sunday and couldn't move, my body felt stiff and twisted and contorted in ways I didn't think my body could go. This last year, I have had very painful epidurals, spinal blockers, steroid shots, and even nerve cauterizations.
None of them helped.
My body feels broken
Fast forward to now. I am 44. I will be having my third back surgery, for a spinal fusion, in November. I can't pick up my grandson, as I can barely bend over. I have resorted to flat slip-on shoes when I always used to wear high heels.
I have to log roll off my bed. Between the AS and the fibro, my body feels broken, beat up, bruised, stiff, like I have been hit by a truck and wrapped in barbed wire.
I forget things, when I speak it is like my brain and my mouth are not on the same page and I get my words mixed up or say the wrong word. I often forget and lose things.
I am so fatigued that it makes it difficult to not want to spend every second of every day in bed.
No one understands what I am going through or how I feel, as I don't "look" sick. And it seems that a lot of doctors don't really know much about AS.
In short, as I think many of you can agree, AS sucks.
Do you use the word disability to describe your AS?