I was in horrible pain for months and my first doctor said I couldn’t have AS because I was a woman. This was 1996-97 before there was so much information available on the web, but I found enough to diagnose myself based on my symptoms. For many years I struggled with different medications and found Remicaid worked the best. Unfortunately along the way I decided to open my own business and couldn’t afford it anymore, but I was running myself ragged with a restaurant (note to self, don’t do that again!). Now at 42, I’m finally in remission. I am able to exercise with yoga and even zumba. I have minimal pain periodically, but for the first time in a decade, I can usually remove it with meditation, stretching, rest and Reiki (instead of Oxycontin).
One of the worst things of living with this disease is that the pain is hard to describe to someone who has never felt the debilitating effects of this disease. I have been through months at a time where I couldn’t walk without a cane. I have some fusion in my lower spine, so I’m constantly trying to straighten up. I know when I’ve pushed myself too hard when I walk by a mirror or window and see myself stooped over. And then it’s time to stop.I believe strongly in doing whatever you need to do to find relief. I also think it’s so important to keep moving, even when it hurts. Just a little walk up and down the hall in your house if that’s all you can manage. You also need to learn to give yourself a break and ask for help or just give yourself permission to rest and heal. I always felt so guilty when I couldn’t do an activity or event because of the pain. I now am okay with saying I’m having a bad day and am not up to it.
One of my greatest wishes is for a cure to be found so no one has to go through what I’ve been through with this. I’m not naïve, I know it can come back with a fury any time, but for now I’m doing what I can to be as healthy as possible. I wish all of my fellow AS’ers a good day, as often as possible. And most of all, know that you aren’t alone.
Sundance Wyoming United States of America