A.S. Face 0852: Chris Kelly

Face 852

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.

Chris

New Jersey, United States of America


5 Responses to “A.S. Face 0852: Chris Kelly”

  1. Hi Chris, wish I had a job suggestion, sorry I don’t, but I really wish you well, and have you thought of trying tai chi instead of Yoga? A physiotherapist was teaching it on a hospital AS course and people were swearing by it… 🙂

    Jane 709

  2. Dear Chris,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  3. Thank you Chris, You have a lot of friends and supporters for those times when it gets hard to understand how to take that next step. It is a journey and you have friends who understand your butt problem.

  4. Sorry Chris, good to hear your story. Avoid wheat and gluten, as that feeds this disease. 37 years with AS! But food change has helped, especially with gut bloating, psoriasis and iritis and vertigo. Bowels are much better. I do research on AS and related nutritional studies. Go to GOOGLE SCHOLAR to see scientific research on any medical subject. Enjoy !

  5. Hi Chris,
    I too suffer from the butt pain (from the sacroiliac joints) as well as pain shooting down my leg due to sciatica. Nerve blocks and cortisone have given me significant relief, although they are a temporary solution. My doctor also suggested radiofrequency nerve ablation which I am considering.Good luck and stay positive!

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