I have found much solace in reading the stories of others here. Iteems only fair that if their contribution offered some healing or comfort to me that I submit the same in the hope that someone might connect.
My AS manifested itself when I was 11 years of age the first time that I recall. One very warm August I had two weeks of brutally sharp hip spasms that were a mystery to everyone. In October, at the age of 13, a flare that was for me the beginning of the end hit. It faded in November but by December it was back FOREVER.
It was my left hip that raged with mysterious unknown pain. It is funny now that in retrospect I thought I was so grown up and now I view 14-year-old boys thinking how young I was when my youth ended. I was given the phenomenally bad advice so many of us get and bottles of aspirin for a year or so. I would suspect that I averaged 20-24 aspirin a day for not less than a year. My parents knew this was unwise but the pain in my hip would not subside without the aspirin but still within a year it was obvious that my leg was bending into the most awkward of positions.
Those first two years were a blur. Lots of missed school. Lots of days trudging in the backseat of my parents car wincing at every pothole or bump looking for a Doctor with a name for my woes. I got the name but not much relief when I was 15 or 16. I refined my aspirin habit to more modern NSAIDs of all shapes sizes and colors. Whatever had happened it was obvious that my left leg was now deformed and I walked with a severe limp. By the age of 18 I was self medicating with lots of alcohol to wash down the NSAID "de jour"; also I was in college with an attitude that presumed my life would not last past 50 and a lifestyle to match. I still would swim every other day but when I missed a month out of laziness or the normal foolishness of youth I would return to the pool scared by the loss of my stroke or flexibility. Oddly the one blessing of this disease was also my greatest curse: I had been told that AS usually kicks in or shows up in a man's late twenties, yet it hit me so young it robbed me much of my youth.
At age 20 I was fearful of entering the real world, yet being at least a good enough a student to get into law school I decided to follow that road, always figuring that one day I would be employable only by myself. At least AS gave me the foresight to see that I'd better prepare for a future where I could no longer rely on my physical abilities. Without doubt at age 21 (just before my 22nd birthday) I was at my lowest. My left leg had been awkwardly bent for more than 5 years and it seemed to refuse to gain an ounce of weight. My rightleg (which I would simply refer to as my "good" leg) was showing all the signs of fusing at the hip and my left shoulder was also beginning to lose mobility.
Most depressing of all was that I couldn't find a Doctor who could change the course of my health. Things were bad enough, but it seemed they were about to become horrible without change or help. I tried every Doctor I could find on the Eastern seaboard to try to get someone to fix my hips. I knew my spine and shoulders were likely to be vulnerable from the aggressive nature of my AS at the age of only 22. After many Doctors advising me "I was WAAAAY to young for a hip replacement" I found Dr. Michael Bronson in NY. He was young and a little arrogant and saw no reason not to "pop" in new hips. Well that summer he did and my left leg was straight for the first time in years although some muscles had atrophied beyond repair. That led to what was possibly the best two or three years of my life: I reduced my NSAID intake on my own and I was able to play tennis again and golf without pain. Small and childish pleasures perhaps, but what other type of pleasures are there? By age 27 my spine was getting very involved and my right shoulder now had a limited range of motion. Neck pains appeared with blindingly severity causing pains that made it difficult to keep my eyes open. I spent my summers at the NJ shore swimming in the ocean surf and self-medicating in the bars at night. I figured I might as well enjoy it while I had my limited health.
By 30 my spine was bent and from my back difficulties my stride was again abnormal. Then I met Diane and things started looking better. For the first time in a long while I got a chance to see myself and my humor through the eyes of a very caring person. I had thought after 15 years of chronic pain that all other people saw was how hobbled I felt. I knew I was a tough but I didn't think the world saw me that way. I knew I had a lot to offer but sometimes it seemed like I didn't have the energy. Diane reminded me that most folks saw my toughness and my wit.
I write this on the eve of the first repair of my right hip, which was replaced one year after my left. AS has won too many battles to count in my life, but the one inevitable fact is that I must live my life with AS and I must find a way to do it with some type of courage and joy. The alternative is living it a way I did for years when I let AS get the best of me. I am 40 now and despite AS medicines making fatherhood unlikely I am the proud father of triplet girls born 1/30/2002. I have a roof over my head and I have more friends than I merit. I prefer to believe I am lucky. I hope 10 years from now I feel the same.