Hi, I Am Stephanie And I Just Turned 16 Years Old.
I have always been very physically active, involved in different sports such as basketball, track, martial arts, and once in high school my freshman year water polo and swim team. My hips and joints would periodically hurt when I was active, but I just believed it was from the rigorous work outs I would attempt and complete. This school year (2011-2012), my sophomore year, during the end of water polo season (end of October), I began to get excruciating pain in my hips. The last six games I had to sit out on because I simply could not swim and could not walk. My mother and I talked and believed it was viral bursitis, a condition my mother had at 15. We went to the doctors and I was given Naproxen to help.
During this time, I still had PE, which would end in December. I did not want to tell my teacher because I did not was to repeat sophomore PE next year when I was feeling better when I could be done with it this year. So I didn’t tell, and tried to do the running and the sports. One day I had tried to run and it hurt so badly I started crying. So I began to walk. What usually took me three minutes to run, took me 15 to walk because I was in so much pain. I finally told my teacher what we thought I had, and he let me continue to lead the stretching but insisted I sit out for the rest of the class period.
The Naproxen was not working, so we went back, but this time by chance the on call doctor was a Pediatric Rheumatoid Specialist. She ordered blood work and upped the dosage.
I was still in school, and because I am in the IB program at my school missing school wasn’t an option. I had a 4.6 GPA, but I could barely walk. To get from one period to another it would take me almost ten minutes, and our passing periods are only 7. I was in so much pain I asked my teachers if I could lay down in the back of class because otherwise I would have to go home.
A couple weeks later the blood work comes in and we get a call from my doctor. “She has arthritis; you need to come into the office tomorrow.”
I was stunned, but at least we knew what it was.
We go in, and she explains that I have Juvenile Spondyloarthropathy, and puts me on Methotrexate pills once a week.
I reacted horribly to them. The day after I took them I would be unable to get out of bed, and would miss school. I couldn’t eat, and lost 20 pounds. Being 5’2″, 123 lbs to begin with, and having 12% body fat, I couldn’t lose that much weight and be healthy. You could see my ribs and spine. I was missing 1-3 days of school a week, but somehow I maintained a 4.6 GPA.
I spent Christmas Eve and New Years huddled over a toilet puking up the few meager bites I had managed to take, and after there was nothing left in my stomach I sat there and dry heaved for hours.
My PE teacher was concerned, and would send me to the gym so I could take a nap. I would sleep in second period PE and then go home and take a three hour nap. And then sleep ten hours a night. My PE teacher passed me with an A, because I tried up until I was so sick I couldn’t move.
My mom decided to take me off this medication and we set up an appointment with my doctor again.
She decided to try the Methotrexate shots because she didn’t want to put me on Humira or Enbrel yet.
We did the shots for three months. They hurt, and they didn’t help. I was still in pain and still sick to my stomach.
We went back to the doctor and I am now on Humira twice a week. It is absolutely the most painful shot, the medicine burns like crazy, but it is helping. Somewhat. It bruises up the entire half of my stomach, but I am only sick the day after.
My high school started sending me truancy letters, and we had to go get a 504. Now our only concern is that the Humira isn’t working as well as it should, and that now I am immune suppressed. So I have to be really careful about my health. I have had a few minor infections caused by the Humira, but it isn’t life threatening yet.
I finished my Sophomore year with a 4.2 GPA having missed 40 days of school.
I am still in pain every day, but I can walk my dog again. I can never play the sports I love, but you have to live for the small victories. I have lost some friends, but I have also learned who my true friends are. They are the ones that not only invite me to the mall, but rent me a wheelchair on a day I can’t walk and push me around.
I am glad sophomore year is over, and hope my junior year will be better. I hope that the Humira works, and that the pain goes away. I live every day for the small victories; being able to walk, slowly, but walking all the same.