I am 39. I first had serious symptoms of AS about 10 years ago, but went in to remission for a few years. About 6 years ago it came back for good, and I was forced to deal with the reality of what I had. I was lucky in that I was aware of the disease already since my father had it as well. I went to the doctor’s and came up B27 positive, with a severe set of symptoms to match.
Being a fighter I refused to take the doctor at her word without giving alternative therapies a chance as the solutions offered me were not my first choice! The cause is not understood, and the treatments are all damaging over time! Supressing the immune system can make it easier for cancer and other things to grow in the body, so I did not like that alternative, and supressing pain allows the disease to fuse and destroy joints and even internal organs (my father died from heart problems which may have been exacerbated by inflammation of his heart valves by the disease) – so clearly I did not like that choice as well. I also knew that many of the treatments would be hard on my liver. Were the treatments almost as bad as the disease? I had to find a way around this.
I tried all sorts of things, for months, everything from fasting (which works temporarily) to various supplements, exercises and meditations. Nothing worked. I could barely dress myself some days and just walking from my house to my car to drive to work was very difficult. I was amazed at how painful the disease could be and how it wore down on one’s psyche so quickly. I was unable to sleep for more than a few hours at a time.
Then I found out about the no starch diet on kickAs.org – and I vowed to give it a shot. I knew it could take 6 weeks or more to take effect, and I could see that it would be difficult to pull off. I wanted to give it a ‘for sure’ test shot to know whether it would work for me, so I decided on something drastic. I started at zero after fasting on water only for 13 days, and added only three items into my diet at first – Butter, Ground lamb, and raisins. I knew there was NO starch whatsoever in those items. I knew it was dangerous nutritionally but I was desperate to prove the diet one way or the other – no cheating was to be allowed. Initially it was difficult but I got used to it. There was some initial reduction of pain, but not much and I knew to be patient with this test. As the weeks wore on I got used to the routine, eating only those three things and trying to focus on the rest of my life. I tried not to compare one day with the next, lest I fall for ‘dieters remorse’ and give up too easily. It was hard to know for sure what was going on and I wanted to give it time.
One morning perhaps 5 or 6 weeks into this experiment as I was walking down the street to a friends house – I arrived at my destination and realized that I had just walked three whole blocks and was completely without pain. Tears ran down my face as I realized that something had changed – that perhaps, just perhaps, I was going to get out of this life of pain. Over the next week or two almost all traces of pain had gone away, and I was sleeping again. I was amazed and empowered.
I have been on this diet now for 5 or 6 years – I have added a few things of course, and found safe sources for any missing nutrients. I have also found that the remaining bits of pain go away when I exercise so thats what I do. I have done tremendous amounts of reading on supplements and health, nutrition and the body, to make sure that I am not hurting myself too much by living this way. I am convinced now that indeed this is not nearly as bad as the alternative. Nowdays I get to eat eggs, cheese, some veggies like carrots and celery (raw), tomatoes and even the occasional square of chocolate. I know if I ever go too far into veggie-land or cheese-land or starchyville I will pay for it, and every so often I do wake up in mild pain in the early morning, but when I do, its always due to something I did – I can always pinpoint the mistake I made. Along the way I learned about a few tricks, like avoiding xanthan and other ‘gums’, sleeping at an angle, etc. Most days I forget I have AS at all, yet if I stray from the diet it will come right back, so it is not in remission – I just have it on a short leash. Amazingly I have had my blood checked and my cholesterol and other numbers are in great shape as well, so this diet of mine appears to not be quite as dangerous as I would at first imagine.
As a part of my exercise routine a few years back I discovered cycling, and it has turned into a passion. I have done many 100+ mile rides and spent many hours spinning up and down the local mountains, taking in the scenery. I am now training up to ride in my first real race, a local time trial event. I am sure to be fighting for last place, but I will give it my best! I am lucky to have the opportunity to do something like this.
A few years back I was lucky enough to run into the woman of my dreams, and now we are happily married! She is very supportive of my chosen lifestyle and I look forward to growing old with her. I know we will be able to deal with any issues that come up, whether due to AS or not!
When I look back now there are honestly times I think that perhaps I am better off with this disease. I would not wish it on my worst enemy, yet my life has transformed in so many ways since it first showed up. I have become more solidly on my spiritual path, I am in the best shape of my life and I have a great marriage. If I look at where I was before AS, that life pales in comparison, like a shadow, another darker person who didn’t seem to care much about life. Its funny how we don’t appreciate things until we fear they may be taken away. I am grateful for this life, whatever form it chooses to manifest.
– Bill Hammond, 8/21/2013
California, United States of America