My name is Sarah, I am 16 years old and I live in Orange, Connecticut. I was diagnosed with Ankylosing Spondylitis (AS) in January 2007. But my problems began way before that in May 2006. I started having small aches in my lower back. I thought it was nothing since I was used to having back pain. I had been having small aches and back problems since 2004. I had even dislocated one of my vertebras when I was in 7th grade. But as the pain grew worse, it started to spread. Soon, I was walking with a limp because my hip and my lower back were in so much pain. I could barely bend over, and I wasn’t even able to pick up my books off the desk at school.
I went to a spine specialist to see what he could do for me. What he said was pretty much, “You don’t need any surgical help, so there isn’t anything I can do.” My mother asked him about the possibility of physical therapy, and he wrote an 8-week order for me. I went to therapy hoping that they would be able to help me. Therapy lasted into the summertime and the pain wasn’t much better. Even after the 8 weeks of therapy 3-4 times a week, my pain was still pretty bad. I had made some progress but not enough to make a huge difference. I started waking up in the middle of the night at about 4 AM. My mom would try to calm me down since I seemed to be having minor spasms. I would usually end up on the couch recliner with ice on my lower back so I would be able to go to sleep again.
The pain was so bad that I didn’t feel like eating that much. I lost 15 pounds that summer. Since I was constantly taking Advil, eating something before taking it was important. I was taking 800mg of Advil twice a day, which is a lot for a person of my size (I’m only 5 ft tall!) but my doctor thought that the Advil would significantly help with my pain.
In August of 2007 we went on a 3-week vacation to my grandparent’s cottage in Sebago Lake, Maine. It was difficult to have fun when I was in constant pain. When I came back from Maine, I went to see an orthopedic doctor who basically told me that the pain I was having were simply growing pains, and there was nothing to worry about. But both my mother and I knew that there was something else going on.
The start of freshman year was a difficult one. I had to get a doctors note to be able to take Advil at the nurse’s office if I needed to. My doctor had me get a MRI to see if they could come any closer to figuring out what was wrong. Later that day my doctor called me and asked me to get blood drawn because they believed that the MRI could possibly indicate leukemia. They also saw a few compression fractures. I was constantly missing school to go to Guilford to see an oncologist. My grades suffered terribly and things were getting really hard.
After a couple months of going to the hematologist-oncologist with still no answers, they ordered a bone marrow biopsy for December 15, 2007. That entire day was a blur thanks to the anesthesia. When the results came back, there was still little information that could help diagnose me. I was tested for absolutely everything: AIDS, lime disease, cat scratch fever, tuberculosis, and more.
Finally I was sent to see a rheumatologist in New Haven to see if there was anything she could do. After 7 months of endless doctor’s appointments, tests, and intense pain I was given some answers. Immediately my rheumatologist thought of AS. She had seen a case similar to mine and it was easy for her to diagnose me. She had blood drawn to test for HLA-B27 (which is commonly positive in people with AS) and surprisingly that test came up negative. She was still pretty sure that I had AS. She prescribed an NSAID, which helped my pain considerably.
Since starting the medication my life has changed in a HUGE way. The summer before my sophomore year in high school we were back in Maine, and I was back in the water. I went tubing like crazy and I even got up on water skis! I have told myself that AS is not going to stop me from living life to the fullest. I am a singer, and I enjoy writing my own songs. Getting up on those water skis was a big inspiration for the very first song I have ever written. I am extremely proud of myself for not giving up and pushing through life’s challenges.
Going into my sophomore year was amazing. I was pretty much back to normal and the pain was very limited. I had the wonderful opportunity to travel to Italy with a class at my school, and I was able to do it with little pain. Since I was in so much pain before I wasn’t able to participate in gym class, which made my muscles lose their strength. I am proud to say that today I actually possess muscles! I’ve been working hard to build up my strength again, and my doctors have been telling me that I’m looking more and more like a happy go-lucky teenager than I had in the past. When we go to Maine again this summer…I plan to get up on water skis, and stay up for more than 30 seconds this time! I hope that anyone who reads this realizes that you can get through anything as long as you have hope.