Friday, April 27, 2012

Just Live

    I guess I should write a blog post.
    I get my first Enbrel shot in about an thirty minutes. It's actually two shots. Uno and dos. Maybe if I become awesome I can inject them myself. Ooh! Better idea! Maybe if I become super-beast I can inject them both at once! No turning back after that point, huh?
    But for now, the syringe is in the hands of my mother. I'm so lucky that she's a pharmacist. Enbrel isn't supposed to hurt nearly as much as the methotrexate, and it's supposed to be tolerated well. We even do the "make-it-yourself" kind (am I really relating a JRA medicine to personal pizzas?), which my pediatric rheumatologist claims is less painful. I reallyyyyyy hope so. My goal for getting my Enbrel injection is to not freak out and make my heartbeat go off the charts. Sounds simple, but you try it. Home is meant to be a safe place. Doesn't seem so safe when a needle is being stuck into your arm three times a week.
    I'm expected by my biofeedback person to associate a shot with something good. What will my good thing be? I'm not really sure. Maybe I'll go play piano or guitar or something. Of course, I'd do that anyway. So I don't know what I'll do. I guess I should figure that out.
    I have an announcement to make that I know for a fact will make you sad. My eraser turtle Stan died. If you don't know about Stan, follow this link: Growing Down. It is really quite sad. His head fell off. It was wobbly anyway, but being in my purse for a week didn't help. His last adventure? Our chorus field trip. Man, I loved that little turtle. We had a ceremony for him in Enrichment 1. My teeny tiny turtle son is gone. And then, OF COURSE, the day after I found out that he was dead, we had to sing the most depressing song ever (that reminded me and my friends of Stan) during chorus. Four of my chorus friends and I lived the day in a depressed sort of fashion.
    In one of my classes, my teacher keeps insisting that she is doing things to prepare us for high school. In fact, she's been doing that the whole time I've been in her class. I get her point. We really do need to be prepared. But sometimes we're only preparing for something. Our teachers have claimed to be preparing us for high school ever since I entered sixth grade. Before that, our fifth grade teachers were preparing us for middle school. In high school, our teachers will probably be preparing us for college.
    But if we are always preparing, we are never just living. What if, just for once, we want to live in the moment? Life isn't about the step after this. It's about the step we're about to put down. The others follow. It's not as complicated as everyone makes it out to be.
    Not that we should be totally unprepared. We just can't make preparation our main focus. When we do, we get distracted from being in the present. Guess what? It's okay to just be.
    I don't mean to complain, but my hips and knees have just been brutal lately. I wonder what other people think when I limp around and use my heating pad and stuff. I've had to wear these heat patches on my back lately because it's been so bad, but they get so hot that you have to put them on top of your clothing (I STILL got a burn). People have asked me about them a lot. Lately, I've been pretty annoyed with answering questions about my arthritis from my peers. Of course, I don't show that. I just, oh what's the word, grimace. But I am pretty darn good at hiding it. That probably goes along with my lack of facial expressions.
    I seriously have an addiction to making jokes about my arthritis (unless I'm in a serious amount of pain). When we were doing a project in language arts, I requested that I would get to play the part of an old woman who was constantly babbling about her arthritis and was carrying a cane. It didn't work out that way but hey, I had fun. Sometimes I have to remind myself to take things a little more seriously. Sometimes I have to remind myself to take things a little more lightly. It all depends on the day.
    I love writing on here. It's how I talk without speaking, and inform without telling.

Love,
Rachel 

2 comments:

  1. I should probably take my arthritis a bit more serious too. :) I choose not to though, most of the time. I like to laugh, and between one friend and I, we are so particularly cutting with comments to the point him and I die on the floor laughing. We're very immature about it, to think we are actually high school age!
    I have symmentric (affects both sides) psoriatic arthritis, and I've had it since I was a baby: I affectionaly call him Arthur because he's 'grown' on me. Quite literally because sometimes I find random joints aching and find out they too are arthritic.
    I think it's mighty fine of you to blog about your arthritis: I do too, and you can check out my blog if you'd like.
    I know this is a long comment, but just to add in one more thing: Lovely Biblical quotes. It's very good to express that!

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  2. Why take it seriously if you don't have to? Haha I think it's really cool how chill you seem with your arthritis. Plus, it's always good to have that one friend who you can joke around with.
    I am only somewhat familiar with psoriatic arthritis, but I will make sure to include you in my prayers.
    I found your blog. We're title twins! Hahaha I like your blog. Thank you for your kind words!
    Love,
    Rachel

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Feel free to comment or shoot me an email - thekidwitharthritis@gmail.com I'll try to get back to you either way!