Hello my name is Amy. I’m almost 42 and almost a year into my diagnosis. Professionally I was very active and spend most of my time on my feet. That was until 2014 when I started working from home my daily step count went from a few thousand to a few hundred. I knew that something was wrong when getting up was almost impossible. I only slept a few hours at a time, and my body felt like someone was dumping cement into my joints….. I discussed this with my primary care Dr who just told me it was stress.
In November 2015 I decided I needed more. So I found a new primary care physician. I went in on day one and said “I’m 40 there is no reason I shouldn’t be able to move, or cross my legs anymore”. We went through my family history and I expressed that my Mom, Dad, and Brother all see the same rheumatologist for various issues but my brother has been going since his early teens…. The wonderful Dr agreed that this was not normal, and that I didn’t have to live life this way and ordered a series of blood test. One of which was HLA B27 which I was positive for.
Thankfully, the rest of my family had the same doctor, so getting in was easy, and they already had 20 years of “family history”. After some X-Rays and MRI I am suffering from some fusion in my right SI joint, but so far not the left. Come to find out my brother and I are both dealing with the same issue (mom most likely as well)…. They have been treated for so long that they have never been tested for HLA B27 before.
I refuse to let AS get the best of me. For fun, I drag race my car. In 2015 I was the 2015 Sportsman Champion for the Mountain States VW Racing Association. I’m the only female who did the VW races in my area (CO, NM, UT), and to have young girls come up to you and say how you are their idol is a honor. I am stronger than AS. With my Dr’s help, exercise, PT, and my medications I can do everything I did before, except cross my legs. I have had to make a minor change to support my hobby, I had to upgrade my car from a Volkswagen Bug to a Firebird because it is easier to get in and out of and driving it at high speeds is easier on my body. But I refuse to give up on my dreams, or myself.
Colorado, United States of America