A.S. Face 0403: Ernest Wong

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


10 Responses to “A.S. Face 0403: Ernest Wong”

  1. I’m speechless (and that’s a big deal). Such logic, such clarity. You nailed it Ernest. This is why I read FACE’s. Becaue guys like Ernest have “been there and done “AS”, and he’s telling me there is life after AS. If you can do it Ernest, then I can. I’ll shut up now and soak all the above in.

  2. Right on Ernest BTW Im from Long Island as well. Stay strong…

    • Thank you for your kind words Derek, Tara, Marti, Abdul and Cookie! I’ve been reading more stories and my heart goes out to everyone. I feel blessed that I can still do a lot of activities that I want. Hope everyone feels better. Stay positive … It is our best ally!

      Derek, you are quite incredible yourself! Such courage and determination!

      Tara, where Long Island are you? I’m from in Suffolk, near Sunken Meadow Park.

      Abdul, I wish it were my car. I went to a driving event. That was a Lamborghini, which I got to drive for 3min. 🙂

      Cookie, you are the BEST! Thank you so much for pulling us together! May God bless you and your family!

  3. Hi Ernest 🙂
    Very inspiring story.
    Thank you so much for sharing.

  4. nice car…i mean nice story lol
    thank for you story buddy and remamber we have AS but AS never have ME

  5. Dear Ernest,
    Thank you so much for sharing your story. It is my honor to do this and you are right, from this day forward you are never alone. Thank you for being such an inspiration to me and others.. you are my magic pill today.
    Sincerely Cookie

  6. My husband and his sister and their father all have AS. In addition to exercise have you tried anything with diet? My husband and his sister have found that a no starch diet reduces their pain and inflammation tremendously. My husband Jeff was taking a ton of pain meds every day, and when he eliminates starches (bread, potatoes, rice, corn, pasta) he only takes about 2 Advil every morning. It’s not for the faint of heart.

    We’ve learned to make a lot of things with coconut and almond flour, but it’s hard for my husband because of course he misses bread! My SIL is really good at it and never eats starch anymore because she feels so much better. She was researching what she could do to manage her pain when she was pregnant since she couldn’t take NSID’s, when she came across the information.
    Might be something worth checking out.

    I have a friend from high school that has AS, and when I told her about how my husband eats, she said she’d rather take the medication! ha ha But seriously, his rheumytologist said he was in remission. I know it won’t reverse damage, but it will prevent any future damage.

    We were especially interested in teaching our children about how to manage it. We have 6 kids, and the statistic is that they have a 50/50 chance of getting it. Hopefully watching their dad feel so much better from how he eats will help any of them who end up with it.

    Good luck to you, I’m amazed how many people live with this disease yet it’s relatively unknown to the general population.

    • Hi Amy,

      Thank you for your information! I actually first came across the low-starch, no-starch diet on Faces a couple of weeks ago. I’m deliberating whether to try it or not. Luckily, the pain is not too bad (or I have a high pain threshold), and I am blessed to be able to function pretty well. It’s just my neck that is very tight and uncomfortable, and my back is almost fused. So I’m not sure if the big sacrifice/change will give me the same magnitude of benefit. I only take 800mg Motrin/day, and sometimes I even forget.
      But if there us a chance to improve my quality of life even a little, it may be worth it. I remember adding a lot of fruit to my diet 15 years ago, and it did help a lot.

      May I ask a few questions? Did they consult a doctor before starting the diet? What did they change first? How long did it take to transition? Is it possible to switch alone (and not involve the whole family)? What do they do when they dine at a restaurant? Being Chinese, (brown) rice is the main staple. I wonder what my alternatives are.

      We have 3 girls and I pray they never get this. However, the 10yr old just started complaining of pain in the right ankle this week. 😦 I’d hate to impose a diet on her so young, and deprive her of so many yummy foods, unless it will really help her.

      Thanks again for your advice! I’m glad that your husband and SIL have found relief. And I hope your children are spared the agony.

      Best wishes!
      Ernest

  7. Keep up the good work Ernest!

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