Ankylosing Spondylitis - My Journey from Complacency to Living Pain Free
I’d like to share with you my personal story about my experiences living with Ankylosing Spondylitis (AS). I’m 46 years old and I was diagnosed when I was 28. Like many AS sufferers out there, I was misdiagnosed for many years, had tons x-rays and MRIs misread, and finally, after a very specific blood test (which tests for the HLA-B27 gene) I was told exactly what I suffer from. Most people who have this gene have AS.
Despite the pain, I was a stubborn kid and even more stubborn adult. I always told my parents or anyone else who was concerned from watching me limp, that I was fine – just a little stiff. Growing up I was very active in sports and martial arts, and I was embarrassed that my pain started to keep me on the sidelines. As I got older, I was afraid to deal with my scary sounding disease head on, so I kept my affliction to myself. The less people who knew about my AS, the better. My friends, parents, and siblings all meant well but I didn't want to share what I was going through. It was not just the pain, it was the feeling of hopelessness. The feeling that you can’t explain this disease to anyone, that you can’t really truthfully tell a friend or loved one what it’s like to feel 90 years old in your 20 or 30 or 40 year old body and have them identify or really understand. You can’t possibly explain that realization you have one morning while trying to figure out a relatively painless way to simply roll out of bed that this may be as good as you'll ever feel. I made a resolution that this would be my silent cross to bear, and bear alone. My affliction left me depressed and complacent and feeling completely isolated.
AS is an inflammatory disease that can cause some of the vertebrae in your spine to fuse together. This fusing makes the spine less flexible and can result in a hunched-forward posture. If ribs are affected, it may be difficult to breathe deeply. Signs and symptoms of AS typically begin in early adulthood. Inflammation also can occur in other parts of your body — most commonly, your eyes. I had a flare-up in my right eye about 5 years ago. It was extremely irritating and I could not stop rubbing it. After two days, my eye was so bloodshot and swollen, I wasn't able to open it and I had to go to the emergency room where they gave me some drops. I had an appointment with an ophthalmologist the very next day, who diagnosed me with Iritis and after prescribing a combination of drops which helped the swelling subside. My eyes have always been pretty light sensitive and there have been other times where I have had Iritis flare-ups but, so far I have been lucky to have had good vision with no need for a prescription.
Aside from a slight limp I might not look outwardly sick, but inside my body there was always a maelstrom swirling each and every day. My body was in a chronic cycle of inflammation and as I got older, the pain became more and more intrusive into the quality of my life. On the days when the pain was really bad, I would get very depressed and I grew complacent and resigned. I was starting to accept the hand I was dealt and I slowly started to downsize my active lifestyle as I watched my window of vibrant health get smaller and smaller…
Three years ago, I decided to make a career change and focus on holistic health, nutrition and traditional Chinese medicine. I had been working in the food and wine business as a chef and wine consultant for most of my adult life and the physical demands of my jobs combined with my apathy for my disease, left me in constant pain every day. Through my research, I discovered that more and more people with AS were finding relief through a no starch diet (NSD), yoga, intermittent fasting and meditation. I had been relying on ignoring my pain as best I could and western medicine, which for me only masked the symptoms temporarily, never worked on the core of my problem. With my newfound career path and inspiration, I started reflecting on my fears, and writing down what challenges and obstacles I would encounter with trying to eliminate my pain, and what would I gain from the process. I ultimately made the decision to not accept my condition and its power over me. I didn’t want the temporary relief or side effects from pain killers or anti-inflammatory drugs. I wanted genuine, continued relief. I wanted a remission that would last a lifetime and I knew it was only attainable with a complete commitment to a change in diet, practicing yoga, intermittent fasting and stress management.
I started experimenting with my diet to find what I could tolerate and what I could not. I began a food log and tested all my food with iodine drops to see the starch content. I quickly learned not to trust everything I read, as there is a lot of misinformation out there. One of my goals in my journey to be pain free was to do it completely naturally. Drugs and I don’t get along too well, and the powerful NSAIDS I was taking were impacting both my mental and physical state. They were helping with the pain, but for how long and at what price? It took me several months of experimenting before I got things really dialed in with my new diet, but now that I’m comfortable with this way of life that I’m completely off any prescription medications and genuinely pain free. I changed my exercise routine to always include some form of yoga or stretching and I was introduced and started working part time for a natural vitamin company and taking their vitamins and supplements. I believe my clean diet, exercise and the quality of vitamins have really made a tremendous difference in my every day well being.
Now for all the good news and my happy ending: After three months with my new regime, the transformation had been dramatic. Not only did I lose a significant amount of weight, I also regained my strength, flexibility, stamina, and I’m proud to say as I turn 47 years old in a few months, I am undoubtedly in the best shape of my life. I no longer have to sit idly on the sidelines and watch my kids or others play sports, I’m right there with them - just the way it should be.
I recognized what I wanted to accomplish, I weighed my fears associated with changing to a regimented diet, added daily exercise, intermittent fasting and made my health paramount to everything else. I also spent a good deal of time contemplating what if it didn’t work? I realized I needed to go out on a limb, get out of my complacent comfort zone and do it. It turned out to be the best decision and commitment I ever made. I finally summoned up the courage to heal, not just physically, but mentally and spiritually as well. I found the desire to push the envelope and become the best version of John possible--for myself, my kids and family and everyone I love and care about. As a wonderful result of that courage, I’m in the best shape of my life, and I never want to look back – the future looks too damn rosy and appealing. I'm sharing is story as a way to offer those who may be able to find even the smallest bit of identification with anything I said and I’d love to hear from you. No one should have to sit idle as their life passes them by. I’m here as proof to show that getting back in the game is so very worth it.
Recent Comments
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What a thrilling turn of events about half way through your story! It just shows what you can do when you truly make a decision to change your circumstances... the rest begins to fall into place. I want to congratulate you for being brave enough to firstly learn and then finally do. Your story warms my heart and I thank you for sharing.
You have not had it easy.I am happy that you are on the mend and wish you well for your future.