Hello my name is Tiffany Bordelon, I’m 19 years old I live in Washington, and I have one of the most unusual cases of AS that I have ever read or hear about. When everything started I was 17. I was sitting in my room reading book when all the sudden I had a muscle spasm in my back, my muscles tend to do that a lot so I never thought anything of it until it happened again about an hour later when I was in the bath trying to soak my aching hips. At that point in my life I had broken 13 bones, including my left hip, my right elbow twice, my left foot twice, my tail bone, and various digits and had, had 5 surgeries. After I got out of the bath I went into my mom’s room to tell her what had happened and she said that I was just fine but to watch it and see if anything else happens. That was in July of 2012 I had just graduated high school, a year ahead of my class, and was getting ready to go off to college at Eastern Washington University which was 300 miles from home. So when September came and nothing major had happened other that a few more spasms my parents and I drove away from home towards what I hoped would be the greatest year of my life so far. Little did I know that in that year I would repeatedly have these muscle spasms that would increase in amount of time and pain. I had gone to see the doctors on campus several times and left every time with more anti-inflammatory’s, muscle relaxers and even more frustrated that they couldn’t tell me what was going on with my body and why everything hurt so much. I usually have a very high pain tolerance I mean after all the bones that I have broken in my life pain is nothing to me really, but for some reason this pain was different. I knew something was really wrong but I couldn’t get any of the doctors to listen to me. I knew that my hips are all funky because my legs are different lengths, there’s enough of a difference that when I sit with my knees up you can see about an inch between the tops of my knees. I tried to get my hips pushed back into place as I normally do by my chiropractor and I ended up in bed for a week unable to move.
In December things got really bad for me, I was having problems walking; I started to use a cane as something to support myself so that I could walk to and from my classes. Silly me thinking that I could take 18 credit hours my second quarter of college were my classrooms would also be spread all over the campus giving me 10 minutes to walk from one side of the campus to the other as to not be late for class, in the middle of winter. I had long ago forgone the traditional backpack, as I couldn’t carry anything, for one on wheels. After a spontaneous trip home to see my regular doctor I was once again left frustrated and with yet more anti-inflammatory’s. I went back to school and toughed out the rest of the quarter and when I went home for spring break I saw my regular doctor again; she decided this time to do some blood work and told me to see a rheumatologist. Turns out that I was HLA-B27 positive. But that was only the beginning of my struggle.
I started my final quarter of my freshman year of college without any more answers. I tried to get in to see a rheumatologist around my school but no one would take my case, and in late April my parents and I made the decision to pull me out of school. During the time I was processing all of the paperwork I had contacted several places back home hoping that someone would take my case on. And finally I found Dr. Sidhu. He was booked out until June but I didn’t mind waiting, what was more time when you had spent nearly a year in constant pain. When I finally got in to see him he ordered a long list of blood work and x-rays and MRI’s to be done. I didn’t see him again until July; exactly one year after everything had started. I won’t lie that was a very long month for me, during that time I had lost feeling in my leg completely and could not pick up my foot at all, I used crutches to walk refusing to use a wheel chair. And when I did see him, he had no answers for me, so he ordered more tests and gave me another anti-inflammatory that he said should have stopped the pain. Well the rest of July passed, I had taken all of the medicine and it had made things worse. I started to lose feeling in my left leg too but I could still move it most of the time. When August came, my next appointment t came with it. That was when my entire life changed. He told me I have this really weird disease called Ankylosing Spondylitis, I had heard of it before but I knew next to nothing about it. I’m really glad I had my dad there that day because I didn’t follow anything after that, I cried right there in front of the doctor, I was so thankful to have a diagnosis after over a year of struggling with this debilitating disease. Finally when I had recovered enough, I asked the dreaded questions, was there a cure and what were my treatment options? He said that no there is no cure at this time, and that because I had a stubborn case and the anti-inflammatory’s hadn’t worked we were going to use a TNF blocker called Simponi. It is a once monthly shot self-administered and it will suppress my immune system. Each shot costs 3,000 dollars. They gave me one trial shot that day and two more trials to take home and use.
Three weeks later I could walk again, I didn’t hurt as bad anymore. It has now been 10 months sense I got my diagnosis and I’m noticing more and more pain. I still can’t sit or stand for long periods of time and I have a lot of trouble sleeping. I see a chiropractor every week at least once if not twice. I won’t ever have a normal life though, as the shots cause me to be so tired that I cannot do anything for a week after receiving them, they also make me sick every time. I have been getting worse lately but I am trying to stay strong. This has been a long road for me and it seems like it will only get longer, but I know that with the help of my friends and family I know that nothing can stop me, and AS isn’t going to change that.
Washington, United States of America