It’s 12 noon, 15 minutes left to 6th period math class. Mr. Butner, my eighth grade sequential one math teacher has been droning on for 83 minutes about quadratic equations. I look around the room and observe my fellow classmates, staring off into space and doodling in their notebooks. Then I realize it’s time for me to get out of class to do my 12:00 dose of Vexol. I guess that’s what’s called a bitter irony.
Discovering my disease was a fluke. When I was 8, my mom took me to the eye doctor because one of my eyes looked like I was having an allergic reaction. After examining my eyes, the doctor actually found iritis in my other eye. The redness and itchiness had nothing to do with my disease, although ultimately I was diagnosed in both eyes. It was like someone had sent us a sign that something was wrong. If it was wasn’t for my mom and her “over-protectiveness” I would have begun to lose my vision. Thus started a long journey of doctors’ offices and prednisone eyedrops and dilating drops and monthly visits (and more) to the eye doctor.
I’ve seen so many eye doctors with so many opinions on what should be done about my iritis/uveitis in the past few years. It’s getting to the point where if I have to listen to my mom tell one more doctor my medical history, I’m going to become physically sick. Up until recently, I never felt that my disease was really impacting my life. So I had to do nine eye drops a day. I guess I got used to it. My mom and I would be driving home from an appointment after more cells were discovered and she would ask me, “Emily, how come you aren’t affected by this?” I would say that all it meant was another drop every day. It didn’t affect my daily life. But now I am fourteen, and my disease has definitely had an impact on my life. Last year when my eyes were being examined at a monthly appointment, my eye pressure had suddenly increased. I was given glaucoma drops, and everything has changed.
Now I’m on a drug to deal with this new problem because everything has changed. It’s called methotrexate. Methotrexate. It’s such a scary name for a drug that every ophthalmologist I’ve spoken to describes as a miracle drug. Why can’t they name it something else? Like, oh maybe, “Trixie?” Then on Sundays at 10:00 a.m. after breakfast I could say to my mom, “I’m taking my Trixie now!” Or at least something a little more kid-friendly. After all, there are a lot of kids, including me, who are depending on this drug to keep their eyes “quiet.”
To be perfectly honest, I’m not exactly sure how I feel about my disease. Some days I’m scared; some days I feel like going a little bit crazy and screaming and punching a pillow; some days I feel adrift and not totally connected to my situation. But on some rare days I feel strong and determined to beat this disease. I know I’ll do whatever it takes.
CLICK AND READ . . .
How often should my child get an eye examination if they have JRA?
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