My name is Ernest Wong and I am from Long Island, New York. When I was 15, I fell hard playing basketball, and my knees swelled up like pineapples. Initial diagnosis was Juvenile Rheumatoid Arthritis. Doc had to extract puss from my knees weekly for couple of months. The pain spread to my hips and feet, and the flareups were awful. As a young adult, I went to see a doctor who diagnosed it as Ankylosing Spondylitis. There was no Internet then and literature was scarce. The doc put me on Asulphadine, but that didn’t seem to do much. An orthopedic surgeon recommended hip replacement, but I was way too young for that. AS didn’t really affect my daily activities, so I didn’t really do much to take care of it, as I was able to physically and mentally cope with the pain and stiffness. But the pain slowly got progressively worse, and 30+ years later my hips have very limited range of motion, my back has mostly fused and my neck is really tight.
In retrospect, I should have actively managed my disease better. I was sporadic at best. I saw a rheumy, did some physical therapy, tried acupuncture and various home remedies, went to the gym, did stretching exercises, etc. However, I was never consistent and didn’t follow through more than a few months on anything. The rheumy recommended Humira or Enbrel, but there were no proven studies that they actually help AS, plus they have their own risks. So I ended up just taking Motrin to keep the inflammation down, with a side benefit of easing the pain and stiffness.
As they say, “Hindsight is 20/20″. Ten years from now, I will be looking back at this moment and saying “I wish I did _____”. So, rather than saying that, I hope to be saying “I’m glad I did _____!” instead. I try to do more stretching exercises throughout the day, incorporating them into my daily routines. I am blessed to have a supportive, loving and generous wife, who insisted we install an Endless Pool in our home, so I don’t have any excuses not to swim and exercise. Not only is swimming great for the joints, it is also excellent for the heart and overall health. Stretching, strengthening and range of motion are the most important daily exercises. Lying flat on your back, lying on your tummy, hanging from a bar on the ceiling, chin tucks, neck rotation, sitting straight, walking tall … the list goes on and on.
For those recently diagnosed, don’t despair. With proper care, you will continue to lead a happy and fulfilling life! I like to think of my AS as an ‘inconvenience’ rather than a disease. I always think that there are people who are much worse off than me. How can I complain about my ‘inconvenience’ when others are suffering much more? My positive attitude has definitely helped me throughout the years. My doctor was telling my wife that AS sufferers are often depressed and lack energy. My wife just smiled, because I am the exact opposite. Perhaps my condition is not as severe as others, or maybe I have a high tolerance for pain. Either way, I am not letting AS defeat me. I am charging ahead with my life! Make no mistake, there is no magic pill unfortunately. You still need to spend time and attention to care for yourself. But you can enjoy life!
Thank you Cookie for pulling us all together into this ‘community’. I don’t know anyone with AS, but now I know I am not alone. Thank you to everyone for sharing your stories! They are inspiring!
Best regards, Ernest
New York United States of America