Wednesday, September 12, 2012

The Little Things

    I've been meaning to write this blog post for a while, but I feel that it's especially necessary now.
    I'm not going to specify my location at all, but I live near a very wonderful hospital. Now you're probably thinking great doctors, wonderful specialties, exceptional care, etc. But I'm thinking butterflies. In every rheumatology room I've been in so far, there have been one or two butterflies painted on tiles on the ceiling. They give me something to look at every time I'm laying down having my joints essentially ripped apart by Dr. Rheumy.
    I looked up the butterflies and later discovered that employees, patients, children, and volunteers painted those butterflies. I think that's really great, because in the midst of the awfulness that goes hand-in-hand with rheumatology appointments, it provides a way out. A reminder that the outside world still exists even if the world of health is crumbling. I'd like to just take a second and say thank you to all of these volunteers for all of their hard-work, and not just at my hospital, but at all of the hospitals around the world. It's not just butterflies, either. It's the brightly colored walls, the people playing with the toddlers in the waiting rooms, and the many pieces of paper scattered throughout the hospital with the names of ordinary citizens who have donated money in hope that a life could take a better course.
   All of these brings me to one point, which is that the little things matter just as much as the big ones. You don't have to be a pediatric rheumatologist, a fellow arthritis-bearer, or a saint to help a sick kid. It's the little things that really count. The friend that calls just to say, "How are you doing?", the card in the mail, the answering questions about your arthritis for you when you're having a tough day, the smile  that comes from hope and not happiness.
    People underestimate how important they are.

Love,
Rachel

Thursday, September 6, 2012

Laughing Knees

*Written about one week ago*

   "Why do you think I roar?" I asked my eighth grade geometry class last year.
   "Why?" asked some skeptical friends. 
   "Because I'm a dinosaur!" This was my little catchphrase for a couple of weeks, and I still use it every once and awhile. It's stupid, but I was proud that I could think of something that rhymed on-the-spot like that. For those of you who don't already know this, I am a really terrible rhymer. Last year we had to make simple, basic-level rhyming poems to prove that we could rhyme and I had to redo mine because it was a "near rhyme" and not an "actual rhyme". 
    At least for me, I take pride in the things that I can do that don't come naturally to me. For example, social studies comes pretty easily for me. I'm just good at that type of thing. But I'm much more proud of my mini, on-the-spot rhyme than I am of an 'A' in social studies. That rhyme took some brain cells.
    I hope to improve upon things that I am not doing so well and stay consistent in the areas that I'm doing fine in. I hope not to get too caught up in goals in the process, and I hope not to slip through any cracks. I must have enough energy in reserve to be able to pick myself up when I fall. I mean this literally and metaphorically. 
    Speaking of meaning that literally, my knees have been giving out a lot lately. Sometimes I'll stand up and one of my knees practically laughs at me and I know that I must sit down again before things get worse. Oh, and apparently I've picked up some habits of when my arthritis is flaring up. My friend pointed these out to me when she declared to me that I was having a bad day with my pain. I was told that I rub my joints, rest my head on my chin, and mess with my eyes a lot. I am often astounded by how much my friends actually know about me. Even I didn't know that was true. 
    I'm not stupid when it comes to my JRA, and I know that the cause is my white blood cells attacking my joints, but I still feel like my joints are the evil ones in the situation. As crazy as it sounds, I get mad at my joints. A mix of mad and frustrated and disappointed. But where do I go with that? 
    School. Full of people who look at you like you're an alien when you say the words "polyarticular juvenile rheumatoid arthritis". People who ask you why your pencil grip is so huge. People who bump you in the hallway without realizing how much that will kill your hips. People who don't understand why you take stairs so slowly. People who ask you why you "get" to bring your laptop to class. People who think that only old people get arthritis. 
    About a year ago, I remember really considering whether I wanted to refer to my arthritis as "JRA" all of the time as opposed to "arthritis" so that people wouldn't associate me with an old person. Then I realized something crucial. The way I word my arthritis does not deserve that much of my time or thoughts, and I will call it whatever I want. 

Love,
Rachel