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 

Thursday, April 19, 2012

Drumroll Please

   I promised another blog post by Friday, so here it is.
   My pneumonia symptoms and the last bit of a scratchy throat are officially gone! Hooray! That was getting pretty annoying.
   I saw my pediatric rheumatologist! It went...drumroll please...well!!!!!!!!!!!! I know, you're surprised. I have to admit that I was, too. He's starting me on Enbrel on top of my methotrexate, which he feels is the absolute best medicine for JRA. While it does mean three shots a week when you add it to my methotrexate (collective awwww), I'd say it has a pretty good chance of making me feel better. Even though I was disappointed with the methotrexate, I still have hope for this one. But let me just say, if it doesn't help, I am going to be extremely frustrated. 
   He (my pediatric rheumatologist) felt active arthritis in my knees and wrists. I have to say, I find the whole "active" thing a little creepy. It's weird to think that at this very minute unnecessary fluid is collecting in my joints and my own body is attacking itself. 
   People are so annoying. I'm sorry for such a general statement, but really. I mean, if I actually go out on a limb and TELL you I have arthritis opposed to just saying, "It's none of your business", which I generally try to avoid saying, don't fire back with an, "Oh, I think I have that too." No. I'm not saying that nobody else has arthritis, but I'm not talking about arthritis caused by sports and injuries or old person arthritis. I am on dangerous medications to control my autoimmune disease. Don't judge so quickly. I usually manage to keep my mouth shut in these situations (thank goodness!), but sometimes I speak up. 
   I'd also like to go ahead and mention that there are two types of people who say that. First, there are the people who honestly just don't understand. I'm fine with these people. I typically just explain a little deeper. I don't want anyone to feel bad for saying that if the intentions were good. I wouldn't even consider that something I have to forgive. It's just a misunderstanding. No big deal. 
    Then, there are the people who are really being quite rude and say it in a "suck-it-up" type of tone. That's when I have to keep my mouth shut and walk away or breathe and then speak. I know, I know, it's an education opportunity. But I'm only human. 
    I feel like the people who actually understand my arthritis, the excruciating pain, and what is does to me are extremely limited. In fact, the only people who fully know everything are other kids/teens with arthritis. It's sad in a way, but it's almost like a little mission. Still, I don't want to complain, because that's just pointless. It's hard to find the line. 
    I still feel so misunderstood about my arthritis, even though I've tried to open up and teach people about it. It just feels so alone sometimes. While I can sit and talk to someone about my arthritis, they'll never truly understand. But I'm going to meet TONS of kids with arthritis this summer at a conference! That sure will be fun. 
   So I read that arthritis is nicknamed "The Invisible Disease" because no one can see the pain. I confirmed my suspicion of multiple "invisible diseases" when I typed "The Invisible Disease" into Google and came up with a range of diseases from depression to FAS to fibromyalgia. 
   Our chorus field trip went well. The bus ride wasn't too bumpy, so my back only ached a little. Plus, I had a stool to sit on instead of standing the whole time, especially since I was in a particularly great amount of pain due to my appointment the previous day. To my chorus teacher: Thank you for all the work you always put in to make sure that I was going to be able to reduce my amounts of pain. It is very much appreciated. 
   Speaking of particularly great amounts of pain, the last few days have been pretty much miserable. My knees and ankles hurt awfully and there was a interval of about twenty minutes yesterday when I got home from school where I could barely walk without my right ankle collapsing on me. Hopefully school will be okay tomorrow. Shall it be a Henry day?
   I really wish I could have done girls' lacrosse at my school this year. All my friends are doing it, and every time is comes up I just feel like I failed at my goal. Maybe there's some truth to that. Maybe I didn't say all that I needed to say to my rheumatologist. Maybe I didn't learn fast enough.
   Or maybe I'm exactly where I'm supposed to be. Maybe it's all part of God's plan for me to feel pain and desperation so that I can go out into the wold with a greater knowledge. Maybe it's all a gift. 
   I'm proud of how far I've come, but I still have a ways to go. No fear, I will never give up. I'm not even tired yet. 

Love,
Rachel

Monday, April 16, 2012

Pressing Questions

    I. Was. Sick.
    I had a pneumonia thing over my school vacation. It really stunk. 
    But I also did a lot of fun stuff. I went over to my friend's house, went bowling with my dad (18 points in 6 frames....yeah, I'm great), and went to my favorite Italian place. Also, I have been on a roll with piano lately. It's quite fun. I'm learning how to play 'Jar of Hearts' by Christina Perri, which is so much fun because the piano part is one of the prettiest things my ears have ever heard. 
    My chorus class is going on a field trip Wednesday. I don't know how I feel about field trips. Buses are just not for me (back problems....this is the one reason this paragraph is related to arthritis), and they throw off my internal schedule a little bit. Hopefully this one will be fun. Stan (my eraser turtle) visited my chorus class today. He was disappointed to find out that only four people were recognizing his singing efforts. 
   I am sorry for not posting in so long. Again, I was sick. I really just felt like sleeping. Plus, most of the time these blog posts end up being pretty deep, and I didn't feel like thinking much. 
   So I don't have much to blog about. I see my pediatric rheumatologist tomorrow, so THAT should be interesting. These appointments don't exactly have a history of good communication and "smooth sailing", if you will. I'll try to blog again by Friday, that way I can give updates. Because things WILL change. 
   I really have no clue what to blog about right now. I could tell you about the pain, but I've spoken of that. Nothing has changed. Maybe that's what hurts more than my joints sometimes. I am writing this in between listening to 'Drive By' by Train on constant repeat.
   Aha! I found a website with 40 of life's "pressing questions" so I decided that I'll answer a couple, since I really don't have anything better to write on here. :)

Q1: What are the top three qualities you look for in a friend?
   A: 1. Uniqueness. I don't want to be friends with two of the same person.
     2. Non-ignorant. I can't think of a more direct word that means this, so I just put two together. Ignorance is one of the biggest things that gets on my nerves. I absolutely can't do it. Ignorance to me includes being shallow, discriminatory, and judgmental.
     3. A sense of humor. I don't take myself too seriously and I wouldn't want my friends to.

Q2: When did you first realize that life was short?
   A: When I turned 10, because then I was double digits and I was like "Oh my gosh, it's not as long as I thought."

Q3: What's a common misconception people have about you?
   A: Probably that I'm some freak-nerd because I skipped a grade. Also, people have misconceptions about my arthritis since it is constantly associated with osteoarthritis.

Q4: When you look into the past, what do you miss the most?
   A: Not being in constant pain.

Q5: What have you done that you are truly proud of?
   A: Learned American Sign Language, created this blog, made the decision to skip a grade even when I was terrified.

Q6: What didn't last forever, but was still worth your while?
   A: Water therapy (tear tear)

Well, that officially fills up this blog post! Send me prayers regarding to my appointment tomorrow! Thanks!

Love,
Rachel 

Friday, April 6, 2012

A Second Older

    I was thinking earlier today about how every second we live we're a second older than the last second (if that makes any sense whatsoever). It is sort of a funny thought, and a couple of my friends looked very uncomfortable when I told them this. Maybe it's a negative thing. But, as I have stated previously, negative things often lead to positive things. This thought made me think more about how I spend my time and whether I am generally productive or unproductive.
    This got me thinking about the fine line between doing something productive and doing something unproductive. Take playing piano for example. I do this wayyyyy more than I should (at least according to my occupational therapist), and most people would consider playing piano a productive thing. But then again, it's not like I perform or compete or anything. I play for myself; to express myself. I would consider it productive, but some people would consider it unproductive. I can't think of a good way to really draw a clear line. I think I'll leave this one open.
    My fingers hurt so badly right now. I'm glad to be able to type this, considering how stiff my PIP joints are. This may have to be a shorter post because of it.
    Let's get something straight with my arthritis: I don't need anyone telling me what I can and can't do. This goes way back to me being the overly-stubborn person that I am. I have already decided that I am going to do some things in the next couple months that are going to hurt. It might be a little difficult to persuade people to let me do these things. I would prefer not to elaborate on this until later on, because I'm pretty sure some of the people I need to persuade read my blog.
    A lot of people think I'm stupid for allowing myself to do things that hurt and going against the general idea of what is safe for me. I'm not saying I'm about to climb Everest. It's all made up of small steps.
    One of my closest friends who knows I have arthritis sits next to me in social studies. As I was managing to write my notes in class the other day opposed to typing them on my laptop, he asked me, "Is it more important for you to look normal or to not be in pain?" I found this to be an intriguing question, but I was sure of my answer and did not find it to be particularly challenging. What I find intriguing is all the different perspectives people have on it.
    "Look normal," I responded quickly, not looking up from my trembling pencil.
    "Seriously?" he asked, surprised. At once, I knew he fell into the other category. I nodded in response to his attempt at clarification. "But if it's going to hurt, then..."
    "If I cope too much in hopes of stopping the pain, I'm not doing anything. I'm adapting. I'm letting the pain win. After a certain point, I set my priorities. Not that I haven't made some changes." I could tell he was stunned at this answer. I don't know if I'm right or not. I don't know if it's better to find ways to brush off the major pain or to live through it and look "normal". For now, I choose to look normal, not because I want to hide my arthritis from others but because a part of me wants to hide it from myself.
    On a much lighter note, a guy who knows British Sign Language came and talked to our school. The point wasn't that he knows the language (he was actually a poet), but he did mention that. How awesome would it be if I knew BSL and ASL??? I am very, very excited about this. At the same time, I have a feeling that I would get quite a few things confused.
    I love to write. Isn't it wonderful that by stringing previously known words together in unique and intuitive ways we can change minds, inspire people, and provoke emotions? I find this thing - this writing thing - to be a gorgeous art.

Love,
Rachel 

Sunday, April 1, 2012

Growing Down

   I often witness adults telling children to "Grow up already!" when they do something immature. This is a frequent scenario in many public places. They become frustrated with young people and wish that the whole world was composed of adults. Well honestly, what fun would that be? We're the thinkers, the inspirers, the unreasonable ones. Some people grow out of youthfulness and the fortunate ones don't. As my grandma always tells me "I'm a kid at heart," (while biting the heads off of gummy bears). I believe this to be the perfect mindset. We cannot allow ourselves to be burdened by all of the trouble the world carries, because A) Jesus already did that and B) it's not like it's doing us any good. If everyone in the world took the advice of children, I can guarantee that it would be a much happier place. Honestly, I wish everyone had a swing set. Now those are pretty much the best things ever. I think when I'm a missionary one day, I'm going to bring people a Bible, a musical device, and a swing set.
   Plus, are adults really that much better than children for the most part? Maybe this is shallow, but I've met a lot of adults who are much less bright than a lot of middle schoolers I know. Maybe the goal should be to grow down, instead. Not in immaturity, but instead in creativity and independence. While I think a majority of people would tell you that immaturity decreases as age rises, I disagree. Adults have it set in their minds that they must act and live a certain way. At the end of the road, though, I'd rather say I took the one that was right for me over the one society expected me to.
   My mother wrote about my resistance to following the status quo in an assignment for school when she had to write a paper about me. It's true; I'm not afraid to voice my opinion. The goal isn't for people to necessarily agree. The goal is for eyes and minds to be open. I am very grateful to those who open mine.
   I have a turtle now. Some say he's an eraser, but I call him my bestie.

     Anyway, the other day his head almost broke off. I know, it's sad. Luckily my chorus teacher took up the task of performing surgery on it. To my dismay, one of my best friends held my turtle hostage and that did not help in Stan's (that's his name) recovery. Shame on you!
     I talked with Stan. The conversation when as follows:
Me: Hey, Stan, how's your neck doing?
Stan: (silent)
Me: Look, I know you must be sore and all, but I would really appreciate a response.
Stan: (Silent, stares at me)
Me: I'll get over it.
     Stan has also been through the mauling process by my kitten. I really feel for that little turtle.
     Oh, and for you who asked me, I learned how to play the F.U.N. Spongebob Song on ukulele.
     I need to find a godmother for Stan, but my two best candidates, who were two of my friends in my chorus class, have proven themselves to be irresponsible caretakers. If you would be interested in god-mothering Stan, contact me here. Also, I am possibly doing an arthritis walk in early May, so if anyone that knows me would like to tag along, please click the same link for god-mothering Stan and shoot me a quick email.
     A girl in one of my classes at school on Friday was astounded to learn that I know ASL (American Sign Language). I don't remember how it came up, but I do remember the after-conversation.

Person: Oh. My. Gosh. You actually know sign language? Like, you can do the whole hand thing?
Me: Nodding
Person: Okay, okay, okay say something!
Me: (Signing, not talking) Whenever people ask me to say something in sign language, I never know what to say. This just makes for a few awkward moments between us. 
Person: Ooh! What'd you say?
Me: Basically that I never know what to say when people ask me to say something.
Person: Haha, okay, well can you teach me how to spell my name?

     I taught her promptly, and she was giddy and pleased. I cannot stress the importance of learning another language enough. It opens so many doors. So far I only know ASL and English, but I hope to learn Spanish and French as well.
     My science teacher and I were debating about whether you can create matter or not. I said that it's possible, while he insisted it was not. Look, I know that there are laws stating that matter cannot be created nor destroyed, but let us remember that back in Christopher Columbus' time there were also laws saying that the Earth was flat. "We think we can't invent matter, so we say it's not possible. But just because we haven't figured it out yet doesn't mean it's not possible." I am telling you, the world is sooooooo not that logical.
     Thank you to my sister and mother for the best day ever.

Love,
Rachel