A.S. Face 0852: Chris Kelly
Chris Kelly – Mantua, NJ Age – 47
My journey with AS started 12 years ago. I play the piano as a side job and noticed pain when sitting on the piano bench. I figured that I was just sitting too long, but over a number of years the pain got progressively worse. As time went on, the pain gradually moved down the back of both legs and into both heels. I found that I had horrible pain if I either stood or sat more than 5 minutes at a time. I saw numerous “specialists” and was misdiagnosed with the following: piriformis syndrome, sacroiliac disorder, fibromyalgia, lumbago, and weaver’s bottom.
6 years ago I was testing for my 2nd degree black belt and went into rapid AFib. I had to be cardioverted, and now go into Afib with any kind of rigorous exercise. In addition, I developed frozen shoulder in both shoulders. Even though I have stopped karate, I have labrum/rotator cuff tears in both shoulders. My saving grace used to be lying down, but now that my shoulders are acting up, there is no position where I am pain free. I feel badly for my wife, as she often says that she feels helpless. She is a nurse and one of the most compassionate people I know, so I can’t imagine how hard this is for her. My daughters are 14 and 21. Both will often tell their friends that I “have butt problems” when they come over and I am lying on the floor. 3 years ago I develop both posterior and anterior uveitis in both eyes. If I am in a lighted area, it is like I am looking through a screen of dots. I have dental pain from gritting my teeth from pain, and now have 3 teeth on the top and bottom that have worn down to nerves. I don’t feel human anymore. I have dedicated my professional career to providing care, education, advocacy and support for children and adults with neurological disorders. I would love to apply these skills to AS in some way, but it seems there are very few career opportunities. I am fighting to work full time, but it is difficult now because I have a training job where I have to stand or sit in one place for 8 hours each day. I am trying to do yoga but it doesn’t give me the same rush as the martial arts. I have a sit-to-stand desk which has helped at work. I also have a seat cushion from “Relax the Back” that I take to restaurants and any other locations where I will be sitting. I am currently taking Tramadol and Percocet. NSAIDs did nothing for me. Rheumy wants me to try Remicade, but I’m not ready. She said I will know when I am ready. On a positive note, I have an amazing wife and family. I feel blessed. People can say what they want about facebook…but if it wasn’t for the facebook, I wouldn’t have met all my AS friends. I wish all who suffer with AS the best in the future. If any of you know of any career opportunities in the Learning/Development/Ed Design in the AS/autoimmune disorder fields, I would appreciate it if you would let me know. I would love to spend my remaining professional career helping those like us who fight this horrible condition every day.
New Jersey, United States of America