The Spondylitis Association of America collects stories from patients around the world. This is an updated version of a piece I wrote in 2016 for Faces of Ankylosing Spondylitis, a website dedicated entirely to the stories of those with AS.
I am Face 1818.
My memory of that day in 1997 centers around driving home on I-295 in Portland, in the Fore River area; that’s when the words I’d just heard took hold. “You have ankylosing spondylitis.”
I kept thinking to myself, ‘Arthritis? Me? I have a chronic disease? I’m 37.’ After about five years of misunderstood and increasing pain, there it was. The truth.
Four weeks ago, at age 59, in Corning, New York, I completed my 11th marathon, a 26.2-mile march through the hills and pastures of the Southern Finger Lakes.
The journey from pain to diagnosis to marathons was filled with twists and turns and was much longer.
Years ago, the disease left me with fusion in several locations in my spine and decreased mobility. Playing with my children on the floor consisted of getting on all fours and letting them climb on me. Most everything else was too painful. Bumping into an unseen object or stepping into a hole sent me into convulsions. Breathing deeply was near impossible. Sneezing was impossible. The mobility in my neck and hips are compromised.
When my first rheumatologist, Dr. Larry Anderson, ordered an exhaustive set of X-rays way back in the mid-1990s, it was so painful trying to position myself on the table, that it brought tears – both me and the X-ray technician.
Running? Very funny. If I ever attempted to jog, two or three steps were about all the pain would allow. My diaphragm screamed, ‘Stop.’
After years of drug trials, I began Enbrel injections in 2003. As I recall, the relief began fairly quickly and some light activities, such as golfing, became palatable and more enjoyable. Breathing wasn’t as painful. At some point, I stopped waking up all night long when I rolled over.
About nine years ago, my daughter, Doria, was preparing for her high school basketball season and wanted somebody to run with her. I told her I’d give it a try.
I hadn’t run much since graduate school (mid-1980s) and before that as a participant in high school and college athletics. I wasn’t expecting much. A sedentary occupation and a sedentary lifestyle fed the AS beast.
At first, a quarter mile was about all I could muster. Doria would run ahead. I’d walk for a while and try again when she looped back in my direction. After a little while, I could do a mile. Soon, she was practicing with the team and that was it.
I was starting to feel some benefit, however, and kept going. There’s a roundabout down the street from our house, exactly one mile. I vividly recall the euphoria of making it to the roundabout and back without stopping. I could run. I could breath. My legs were coming back.
Then I noticed a couple of friends posting road race photos on social media. It looked fun. Doria and I registered for one, the Jingle Bell Run in December of 2010 in Freeport, Maine. A fundraiser for, drum roll please, the Arthritis Foundation.
I was hooked for all the right reasons. I was feeling better. The road running community is supportive and inclusive of all ability levels. And, yes, it stirred a little competitive juice. In short, I smelled fun.
The thought of running more regularly was attractive. I wanted to increase my mileage and consulted my rheumatologist, Dr. Brian Daikh, asking if such a load was advisable. His answer was simple and direct: “If you feel up to it, go ahead.”
From there, I methodically kept upping the ante. That first 5K turned into a 10K, then 10 miles, then a half marathon. The more I ran, the better I felt. The pain doesn’t go away, but the inflammation and “flares” are more infrequent. The disease is not reversible nor curable. There are good days and bad days. For the most part, though, my body has held up and I continue to learn how to control (or so I think) the inflammation with a combination of exercise and nutrition.
When I’m outside, moving around and lost in the moment, in those fleeting moments, the AS takes a break.
Dan King is an editor/page designer for Mainely Media, LLC. His next marathon adventure is scheduled for January, the Zoom! Yah! Yah! Indoor Marathon at his alma mater, St. Olaf College. If this column provides motivation to one person, that’s a victory. For more information, visit www.spondylitis.org.
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