I’m 40 years old. I suspect that my AS started surfacing when I was in my early teens because I constantly had hip pain and sometimes lower back pain. But because I was training for and competing in 1,500 and 3,000 meters on the track teams, and playing on Volleyball teams in middle school, high school and college in China, we always just thought it was the sports injuries associated with training. Over the years, the pain had crept up along my spine and toward my neck. Finally, right before I came to the States for graduate school at the age of 25, I was diagnosed with AS, which of course, we had never heard of. It probably would not have made much of a difference had I been diagnosed with AS earlier, since there was and is no effective treatment or cure of the disease.
Over the last 15 years or so, my conditions have definitely worsened. I have very limited range of motion on my back and my neck and I cannot easily bend down to tie my right shoe because of my right hip. You can definitely tell from my posture that there’s something wrong with my back and neck. But given that I’m at “advanced” stage of the disease (given that I’ve had it for at least 25 years), I consider myself lucky compared to some of the fellow AS’ers, who are in a lot worse conditions than I am. I’ve long gotten so used to being in pain constantly. What has been most frustrating is that I can’t do a lot of the stuff that I could easily do and can’t play a lot of the sports I love and was extremely good at.
I’m sure a lot of you share the same feeling – being in one position, being it sitting, laying down, or walking, for a long period of time, usually does a number on you. I used to take some regular pain meds to alleviate some of the pain, but in recent years, I’m not really taking anything. I can’t do any jogging, or play volleyball, soccer and badminton competitively anymore. But I’ve gotten into some other hobbies, which make life just as fulfilling I train and compete in K-9 sport of Schutzhund and enjoy hiking and backpacking. I know – people drop their jaws when they see or hear that I backpack for days with a 60 lb pack on my back Doctors have all warned against me doing any arduous exercises and basically all wanted me to just do light stretching and then resign to just trying to prolong the period of time before certain parts of my body are worn out and need replacement. Basically, they said the only thing that can be done is to get a hip replacement at some point in time. But I’ve been lifting weight and doing fast walking in the gym and I’ve found that these actually help me counter and combat the forward curving of my spine. Any given day, my body feels the best coming out of the gym
It is so encouraging to see so many of you with this debilitating disease sharing amazing stories of you overcoming the challenges of having these conditions. It is so true that so few people know about this horrible and incurable disease that affects so many people’s quality of life. I applaud this project to raise the awareness of AS and truly hope that people who have it can feel free to share their stories and experiences, good or bad And knowing that God always loves us and has a plan for each and every one of us is always comforting ….
Born in China, now living in Arizona, United States of America