Tuesday, May 29, 2012

Birthday Post

    Remember when I mentioned that over twenty different countries were viewing my blog? Well, now I'm up to forty! This is so exciting :)
    Plusssss today is my birthday. Which makes me feel like forty different countries is like a blog-present. I think I'm going crazy. And while we're on the subject, thank you for all the singing and the cards and the presents and the love today!!!!!!!!!!
     Everyone was asking me if I feel any different being a year older now, but honestly I don't. I'm still just me. I'm still just a person. I'm still going to write on this blog, I'm still going to play guitar until my fingertips are numb, and I'm still going to reread things excessively. So no, I do not feel any different. I still feel like me.
     I feel pretty neutral about birthdays. They're fun, sure, but I don't like how people get sad about them, especially older people. Who cares how old you are? Just have fun. Don't stop having fun. We were talking about retirement in geometry, and I casually mentioned that I don't ever want to really retire. Because the thing is I want to be a medical missionary, and it's not like I'm ever going to stop doing that. "If I did retire I'd at least be doing things," I told my friend, seeking a compromise.
    "Retirement is when you just sit and wait to die," he replied.
    "Why would you ever wait for it?" I laughed, "Trust me, it will come fast enough, it doesn't need to be waited for!" We laughed some, but really. I hope I'm never to the point where I'm not doing anything productive, whether it's traveling the world as a medical missionary, folding clothes for a homeless shelter, writing a book one finger tap at a time, or being an ear to listen.
    So happy birthday to me. I have to go to my chorus concert soon, and I am seriously debating about whether to curl or straighten my hair. It's naturally very wavy, so I'm thinking more along the lines of curling as that should be easier. But I don't really know for sure. Life's hardest decisions are the small ones.
     One more thing about birthdays: enjoy them, because you only get one a year.

Love,
Rachel 

Tuesday, May 22, 2012

A Chariot to the Sun

     Apollo's chariot skimmed the sun. My chariot dove straight into it. 
     My chariot is better than Apollo's, to put it simply. I built my chariot off of dreams with weight and substance*, not empty visions. Apollo built his depending on four horses to pull it. I built mine pulled by hope and even fear. 
     Things are much more amazing when you take a chance to see the fire, to feel the heat layering up on your skin. Apollo saw the outside and got a simple taste of the sparkling fire but never felt it. But how can someone convince Apollo to just go for it? Isn't that the tiniest bit impossible? Why can't Apollo just "let his hair down"? 
     I feel sorry for Apollo. 
     On a completely different note, I haven't had biofeedback in a really long time. I don't really miss it, I was just thinking about it. I'm pretty darn proud of myself for going ahead and agreeing to try that out about a year ago. It hasn't helped my arthritis at all, but it's made me better at coping with the pain. I've gotten to the point where I'm willing to try anything, even if it's something that I think is crazy. When you're truly in a lot of pain, you don't shut down ideas before trying them. 
     Not that the pain isn't still excruciating. My wrists and knees have been the worse lately. I know it's bad when I go into a zone where I almost don't feel it. My head spins a bit and audible things aren't quite as clear and precise, and then there I am, soaring my chariot into the sun.  
     It's a tricky situation, telling someone that you're in pain. If you say yes, you come across as weak. If you say no, you're setting yourself up for failure when you later have to explain why you couldn't get all of the notes down. If you say just a little, they look at you suspiciously. People see past lies like that. Took me an awful long time to learn. 
     I wish there was someone to talk to, even if they wouldn't understand. 
     So in response to my occupational therapist telling my mother that I was "traumatizing and wearing out" my hands by playing five different instruments, my mother said that she thinks that playing and writing music is good for me psychologically. I wonder if that's true. I don't really see it as much of a stress reliever because I scarcely feel stressed. I see it as an anger and frustration outlet type thing. I'm always better at piano when I'm mad/aggravated and when it's early in the morning (I don't know why, so don't ask me). 
     Anyway, I had an amusing conversation with my occupational therapist. 
OT: What do you normally do when you get home from school?
Me: Play piano. 
OT: What do you do if that hurts?
Me: Play guitar. 
OT: What if that hurts, too?
Me: Practice my cello. 
OT: But wouldn't that be painful, too?
Me: Then I'd play ukelele. 
OT: (Disappointed sigh)
Me: I sing, too. 

The singing part seemed to comfort her a little bit. (Until I mentioned that I sing while playing guitar...I'm evil.)  Makes me feel a little better too. Singing is probably up there with piano as one of my favorite things to do. Plus, it doesn't even hurt! Not even my jaw, usually! It's pretty perfect, huh? Except of course when I decide to play an instrument at the same time...
    Clearly, my fun level is more important than my pain level. That's something I'm pretty proud of. I've grown up fast, but I still have my young-person priorities very set-in-stone.
    A lot of people ask me what my favorite instrument to listen to is. Honestly, I really like listening to singing, but I also love to listen to piano. But I like to watch the pianist while the piece is being played. Because if there's some depressing moment going on and the pianist looks like they've just been offered a super high-paying, easy job, then I can't enjoy the music. If it's glorious, look like it's glorious. If you as the musician are not invested, then I am not going to be invested, either. Of course, I'm not the best at this. My lack of facial expressions does not offer any assistance. 
     It never feels good to get something you didn't work for. I mean, it's nice and all, but it's when you get something that you really worked for that it counts. 
     A lot of arthritis blogs talk about the importance of getting a lot of sleep when you have a chronic illness, to help rejuvenate your body. This has never been an issue for me, because I am pretty incredible at sticking to a 9:00-10:00 bedtime. This is just my personal rule; my parents don't really have any rules about what time I go to bed (not that they would let me go to bed at 1:00 a.m. or anything). I have discovered that I'd rather wake up and feel great (except for some serious aggravating joint stiffness) than stay up late and wake up sluggish. Still, I'm convinced that if I went on a wacky sleep pattern my arthritis would be worse. So I'm going to be your mother right now and tell you to go to bed early and take naps throughout the day. 
     My birthday is in a week! I don't tend to get as excited about birthdays as most people do. It's not a real measurement of your age. It's simply the number of laps you've run around the sun. As far as I'm concerned, my chariot's already been to the sun and back. So how are you going to judge my age now?

Love,
Rachel 
    
*See that, youth people?



Thursday, May 17, 2012

Metaphors and Moral Dilemmas

   It's been an unenjoyable week with my arthritis, to put it simply. It seems like the whole world is working around me but my stupid joints don't. I have to have special accommodations for testing, including that I don't fill in answer sheets (they severely irritate my finger joints). I am really getting annoyed with people, even my friends, saying they're "jealous" of me and all because I don't have to fill the answer sheets in. Let's get something straight. I would gladly trade with you. Keep your mouth shut.
    It is only when I am writing and when I am reading that I realize how much I love metaphors. Some people have asked me how I think of them (or how I come up with them, if you'd rather put it that way). I don't have an answer for this. I can't make up a simple formula that everyone wants to hear. When I'm writing, I don't think about using metaphors. I honestly think in a metaphorical way. Sometimes I even have to translate what I'm thinking out of a metaphorical phase and into a more logical statement before it comes out of my mouth. I'm not some dreamy lunatic, I just think outside of the box.
    I think that's where poetry steps in. It's so much easier to just collide all of my metaphoric thoughts in a poem than try to smush them all into an essay. By the way, I updated my Poetry Page! You should check it out ;)
    Apparently according to one of my friends I interpret music figuratively. For example, my absolute favorite song in the whole wide world is "Try Again" by Keane. That is pretty much the most gorgeous song ever. It's both sad and uplifting, inspiring and sympathetic. The instrumental background is gorgeous. There are not too many lyrics. It's simple and magnificent. I would strongly suggest that you listen to it. I promise you that you'll thank me later. Anyway, it has so many metaphors that I drown in the beauty of it all (well looky there, a metaphor!). 
    My friend Addie and I were talking about books awhile ago, and she mentioned a book that she said "seemed like a book I might like." She then proceeded to say, "It's all metaphorical and stuff, like you." We laughed, but that's the truth. I honestly have no idea how I remember that, but I remember random things. I'm pretty positive that we all do.
    I've been extremely interested in moral dilemmas lately. My driver person (it's complicated), Allie, took a philosophy course and whenever we would be at my house we would ponder some of them and discuss our opinions. If you don't know what moral dilemmas are, here's an example:

    Five men are tied to a train track. The train is approaching them. You are standing on a bridge above the train track. There is another man on the bridge. You know that if you push him over, it will stop the train and the five men will be saved. Do you push him over? If so, is life measured in numbers or quality?

     I find these incredibly intriguing. Some of them baffle me so badly. I honestly have no idea what I would do in a large number of the situations. I also think that it's great to reexamine your morals and what is really important to you. These are the things I do in my free time, everybody!
     They (no, I don't know who they is, thank you very much) say that math problems are good for your brain. But I believe that reading and contemplating metaphors and moral dilemmas is a significantly better workout for the human mind than any logical questions.

Love,
Rachel
        

Monday, May 14, 2012

Brainwashed by Society

   Hello everyone!
   Guess how great I am at getting Enbrel injections? Awesome!!!!!!!! I'm not trying to brag, but it is something I am proud of. 
    My arthritis hasn't been too bad this week, but it hasn't been great, either. My knees and ankles are the worst. I guess I'll just have to keep waiting for the Enbrel to kick in. I'm not bad at waiting. My patience isn't great, but it also isn't terrible. I'd say one and a half years of constant pain is a little too long to wait. 
    This week has brought about few miniature miracles for me. I know that sounds stupid, but seriously. I think I'll list them now, just to give you some perspective :)
  1. I got to sleep in school, during what I would label the worst thing ever that happens at our school. SCORE!!!!!!!!!!!!!!!!
  2. My friends had bread :D
  3. I am going to adopt another eraser turtle!!!!!!
    I will not elaborate on one and two, but I would very much like to tell you about number three. Since Stan's (my former eraser turtle) death, I have decided that I have had adequate time to move on and it is time to bring in another little turtle. 
    The new turtle has a light blue shell opposed to Stan's orange shell. He's quite adorable. I don't have a name for him yet, but he's definitely a boy. Email me with suggestions at thekidwitharthritis@gmail.com. I got some name suggestions as a response for my former post about this, but I haven't chosen yet. What do you think of the name Carl?
     So I always asked a lot of questions, and as I was thinking during my guitar lesson I began to wonder about major and minor keys. (If you don't know much about music, bear with me here. It'll get deeper in a moment, I promise.) We associate major keys with happiness and minor keys with sadness. But does that come naturally? Or is it something we're taught? Is it just because sadder songs tend to be in minor keys and happy songs tend to be in major keys?
     I asked my chorus teacher, and she said that it's more of something we're taught than a natural correlation between major and minor and moods. I get that, and I'm fine with that answer because I know that coming from her it's accurate. Let me tell you what I'm not okay with. I have been brainwashed by society. 
     Which got me to wondering what other concepts we're taught as if it's just normal but really we were just brainwashed into. Like the concept of people older than you knowing more than you. I think that really depends on what you count as "knowing". I don't consider more knowledge knowing more. I consider knowing more as how to get the very best out of life. And personally, I think preschoolers do that better than anyone else.
      What about the common thought that everyone should be able to pay attention and focus to an infinite degree? I think it's good that our minds are willing to drop something all together and explore something else. To be honest with you, I have trouble sitting through movies. They're too long and I'm too fidgety. Does that mean I have an issue? No! It means that I squeeze a lot of thoughts into a little bit of time.
       Or what about that, for the most part, eating fruit on bread is unacceptable? Listen, people. If you can eat jelly on bread, I can eat pineapple rings on bread. Who are you to tell me that's not normal? Deal with it.
       Why is red always love and blue always depression and green always growth? Is it wrong if I think of it in another way?
       What about the Jaws theme song? Why is it that every time I hear that I look around suspiciously? Why has society decided that it's a good idea to classify everything and associate it with something else? What if a major key is simply a major key, and a minor key is simply a minor key?
        Lastly, the most pressing question of all. Can we push through all of these misunderstandings, and will we be better people if we can?
Comment if you have any more examples of society brainwashing people. Hope I gave you something to think on!

Love,
Rachel

Wednesday, May 2, 2012

A Mind Cloud

    Ow! Cough! Ow! Cough! Ow! Cough!
    That's pretty much how my day went. My arthritis was awful. It feels like a million of the strongest people in the world are crushing my joints. So today it was mostly my lower extremities, especially my knees. It hurt my hips to sit down and my knees to stand up. It hurt my ankles to move in general. Oh when oh when will the Enbrel kick in? Yep, that's what I do when I'm in pain. Make little rhyming phrases to the tunes of my childhood songs. Mature, aren't I?
    As odd as this sounds, I have trouble thinking when I'm in pain. I hear words individually instead of all together and I can't process them because pain is this enormous cloud in my mind. It sounds so metaphorical here, but it's not. It's reality for me. 
    Oh and then my cough. I'm pretty sure it's either a part of still getting over my spring break pneumonia or just a pretty casual cough. I thought I was done with the effects of the pneumonia, but it's been pretty on and off. I think it's probably just a "routine" cough. Because of my methotrexate and Enbrel, I get sick more easily than other people due to a weakening immune system. But I am strong! (and stubborn...)
     People tell me that they "worry about me". Let's get something straight. I do not need anyone worrying about me. Even I don't worry about me. I worry about the arthritis, and I worry about injections (even though I'm pretty Super-Woman when it comes to those), and I worry about the future. (I know, I know, I shouldn't worry. I don't need a lecture.) But I don't worry about me. No one needs to. God's already got me taken care of. Worrying about me is like having the job of writing the number 7 over and over again on a slate of concrete in a blank room. It's a job that doesn't need to be done. So stop doing it; you're wasting your own time. 
     Not that I don't appreciate everything. It just gets old. Prayers are still welcome. 
     In moments of great pain, I desperately wish that someone could understand. But as many words as my mouth can spill will never bring someone to understanding. Understanding the frustration of my 2010 doctors, the life-changing moment of the knee and ankle ultrasound results, the devastation in being awake for two sets of injections, and more and more is an impossibility. The list of everything goes on and on and on, and while I need someone to "get it" no one does. How do I explain such an atrocious amount of pain without coming across as whiny or a complainer? 
      So I move on with my life and pretend that they all get it. I wonder if people even want to get it.  
      I always joke with one of my friends (who shares the exact same schedule as me from electives to core classes) that it's about time for me to amputate my own leg. Pros: No knee or ankle or toe arthritis. Cons: No leg. At first I was going to do the honor of chopping it off but I decided that it would be better if she did it. Of course, the plan is for us to say that I did it myself. She is not about to get arrested!!!
      I wonder what my life would be like if I didn't have arthritis on a pretty much daily basis. Would I be walking down the hall to put my lacrosse gear in another classroom? Would I be running around the gym and beating someone in a flexibility contest? Would I be happier?
      That last question bugs me a lot. I don't know how to answer it. 
      Can't be comfortable. Can't be out of pain. Can't relax. I have this disease, this polyarticular juvenile rheumatoid arthritis. Can't calm down. Can't take a deep breath. Can't breathe at all. 
      Can inspire. Can create. Can dream. I have this disease, this polyarticular juvenile rheumatoid arthritis. Can blog for 24 different countries. Can pray to the one and only wonderful God who listens and responds. Can live. 
       Arthritis stops me, but it also pushes me forward.