I am so thankful today. I get to write my own success story.
First of all, thank you to everyone on this site who has helped me along this journey as I continue it. I, like many here, was lost and looking for help when I stumbled upon my fellow AS-kickers. Thank you to all of you who give your time and energy to help others. May God bless you. We need each other. AND, a big thank you to Professor Ebringer and his team.
For me it started with shoulder pain in June of 2007. I was 45 years old and pretty active. My first thought was that I had pain from my golf swing. It's not a pretty sight. My primary care Dr. Richard Ellis of Kaiser Permanente prescribed Motrin and rest. Over the next few weeks, the pain intensifed so that it was difficult to sleep. Then, it progressed to the point that I had a hard time combing my hair and putting on a shirt. Pain and stiffness in my neck was next. I noticed the pain subsided after taking a warm shower and getting on with the day. Over the next 4 months I continued taking Motrin 800mg 3 times a day, received a cortisone shot in both shoulders, was getting prepared for shoulder surgery, started taking predisone and was in quite a bit of pain. Fortunately, Dr. Richard Ellis has a suspicion about my symptoms and gave me a blood test that showed I was positive for the HLA-B27 marker. Next, he sent me to the Rheumotologist.
When I was told I have Ankylosing Spondilytis I was disappointed. I was prescribed more predisone, methotrexate and more Motrin 800mg. I started doing my own research and found www.kickas.org
and Professor Ebringer's research.
I read up on the website and did some changes in my diet but not enough to get results. At the same time I started giving myself Enbrel injections which took away all the pain. I was using Enbrel once a week, as prescribed, until I eventually only needed it once a month and my Rheumatologist was fine with this.
During this time I continued to research the No Starch Diet/Low Starch Diet other diets; "The Maker's Diet", "The Hallelujah Diet", "Atkins Diet", the "No Night Shade Vegetables Diet" and also had some first hand experience from an acquaintance who had severe A.S. in his twenties than found life-long relief through diet based on Fruits, Vegetables, Nuts, and Whole Wheat foods, which for him was based on the Seventh Day Adventist Bible based diet which is a vegetarian diet.
We are like walking laboratories. We research and then we experiment to find out what works for us. Thankfully we have enough similarities that we can find common ground and encourage one another with hope and ideas. I am currently reading Carol Sinclair's "The IBS Low-Starch Diet" book and finding much comfort in knowing that others have the same ups and downs that I do. I think I read a quote here at Kickas.org, from John "Dragonslayer", who responded to one of my questions early on, and said "your pain will train you." How true that is. I have carried that with me. I finally got sick of injecting myself with Enbrel and its potential side-effects and decided to follow the research and advice and change my diet. With Enbrel, and other biologics, it's a love/hate relationship. I'm thankful for the pain relief but I don't want to risk the side-effects.
It has been over 100 days since I used Enbrel and I am feeling great! Wow! That felt good to write. I am cautiously optimistic. I am an ASKicker!!! I am not going to let this thing beat me. I have eliminated potatoes as they cause the most problems for me. I have been able to get by on a Low Starch Diet. I am eating those good fruits I used to avoid. I am eating tasty green vegetables I used to not like. I enjoy eating all the best meats. I can eat whole wheat bread (I make it at home), brown rice (on occasion) and whole wheat pasta (also, limited). If I have a flare up, I change what I am eating. I feel it in my hands and shoulders at night if I have made some poor choices with my food. I exercise 3-4 times a week and that seems to help as well.
Thanks again. The journey continues for all of us. One day at a time is actually a good way to live.