What happens outside the doctor's office - Christine - Age 14
Hello, my name is Christine. I am 14 years old and live in Texas. I was diagnosed with spondyloarthropathy 4 years ago. I go to a pediatric rheumatologist every three months or so. My problems started with my feet. I often woke up with a lot of pain in my feet. Sometimes it would last all day. Then my hands started hurting. It wasn't until a year after I was diagnosed that my back started hurting. I also have constant canker sores in my mouth. My rheumatologist says it is because I have spondylitis, which is an autoimmune disorder.
It's really frustrating sometimes because not many people know how I feel and they don't really understand. I sometimes get really bad migraine headaches, some of which are so bad that I completely lose sight in my left eye. It really bothers me when people say they have a migraine and it's really just a headache because they don't know how bad it can really be.
My school has been really great with helping me. I get a rolling chair with a cushion on the back. Sometimes when my hands really hurt, I only have to do the odds or the evens instead of the whole thing in math. I test in a small group so I can get up and walk around without bothering anybody. I don't have to take lots of notes because my teachers give me notes. It really helps especially on days when my hands hurt really badly.
These are some of my dislikes
- Sitting for long periods of time - It's really hard to get comfortable when I sit for a long time, but when I get up, it's usually worse.
- Nighttime - I have a hard time sleeping sometimes. I often wake up in the middle of the night and its really hard to go back to sleep.
- Mornings - I am not a morning person. There is a difference between waking up and getting out of bed. I have to be woken up at least half an hour before its time to get out of bed so I can be ready to get up, or I'll hurt more.
- Gym - Sometimes the class has to run eight times (2 miles) around the track instead of 4 times (1 mile). I get to walk now, but that is still a struggle. It's easier to walk than run, but it still hurts.
What I have learned
I have learned that I can't just wait for somebody to make me feel better because usually they don't know what to do. I have decided not to just sit around all day and feel sorry for myself. Complaining doesn't really solve anything so I try not to. It doesn't do any good. I save complaining for when I see the doctor.
These are some of my likes
- Swimming - because its very relaxing and I don't really have to do much.
- Ice skating - It is fun to go with friends.
- Animals - My cat Princess is the best part of my day. When I come home, my kitty greets me. Most of the time I think she wants food, but I'd like to think she came to see me. She can act crazy some of the time, but most of the time she can be very calm. I really like it when she sits on my lap and I pet her and she starts purring. She is very soft.
- Friends - Sometimes I can feel a little left out because I want to do everything they do, but sometimes it's hard. I had a good friend that had rheumatoid arthritis, and she was my only friend who might have had an idea of what it's like. Then I met someone else about a year after who knows exactly what it's like because she has spondyloarthropathy too! I was sorry that she had it, but I was so excited that someone else knew what I was going through, and I knew what she was/is going through. It is nice having a friend whom you can relate to.