Saturday, June 29, 2013

Aim High

      In elementary or middle school (I can't remember which), I watched a video on smallpox. That video changed the way I think.
      I haven't told many people about this, but that video really hit me. First, we saw all of these pictures of people infected with smallpox. It was horrifying and hard to look at, but more than anything, it was saddening. Many of them were only children. Children like me. That could have been me. It really hurts to see things like that. But then the laboratories took over the screen. They showed the creation of the smallpox vaccine. Then, they showed all of the epidemiologists and health organizations working together. You know what the goal was? The goal was the eradicate smallpox from the entire world.
      I was stunned when I saw this. Their goal was the whole world! I cannot imagine shooting for a goal that big. I mean, isn't the world all we have, at least right now? There isn't a bigger goal! How in the world did they think they were going to completely eradicate smallpox? Plus, doesn't that seem kind of unattainable? Isn't that just setting themselves up for failure?
      Nope. They did it. They eradicated smallpox. There are no more cases.
      If they can eradicate smallpox, can't I set high goals, too? After all, they were only human. This is the perfect example of what teamwork and aiming high can do for you. I find it bothersome that some people think I'm crazy when I aim high.
      On top of many other things, I am aiming for remission. I am not putting a time limit on it, because that will upset me if I don't reach it, but I want it very badly. I don't think it is unreasonable or stupid. I think remission is something I will one day have. I truly do. Of course, I hope that remission arrives sooner rather than later, but I know it will. I think that is the Christian hope that everyone speaks so highly of: knowing that this life is not the end of things. So even if I never go into remission in this life, one day everything will be lovely and pain-free and I will be able to run and chase fireflies without tiring or hurting. However, that doesn't make today much easier. Because today, it hurts. And today, I was limited by it.
      People always used to tell me that I could use my juvenile arthritis to relate to other kids with juvenile arthritis one day. I'm pretty confident that I'm no longer headed down the pediatric rheumatology path, but I really do think it will be an experience I can use to relate to others with. When people first suggested that I will be able to speak to other kids with arthritis one day, I was a little overwhelmed. I mean first of all, I'm nothing special in dealing with this. I'm pretty darn average. Secondly, how in the world will I be able to talk to kids with arthritis? Won't it make me upset? It's hard at the arthritis conference to look around at the conference area and know that all of the other kids hurt too. It's hard to walk up to the kids of a mom whose blog I read and know how much they have been through. I don't go through as much pain as some of the kids there, and it's hard to think that they have to deal with the same pain or worse pain. In fact, it is hard to know that they have to deal with any pain at all. It is not okay with me.
      But now it seems so clear that even though I don't believe my arthritis is a blessing or purposeful "gift", God will be able to use it. I will be able to look in that child's eyes with empathy and I will be able to know how badly it does hurt. I may not be able to fix it, especially since I no longer have my heart set on being a doctor, but I will be able to understand. I cannot even begin to count how many times I've wanted someone to understand.
      I will aim however high I want. If human beings can eradicate smallpox, then I can live an extraordinary life.


Sunday, June 23, 2013

Never Defined By Disease

      I'm the girl writing the angry blog post at midnight on my bed in my room. Honestly, I was about to go to bed. In fact, I want to go to bed. I don't even need to write this, as terrible as it sounds. I have an idea for another post separate from this one already, and I wrote a post yesterday that I was planning on publishing Monday. But for some reason, I get my best ideas late at night. Tonight is one of those nights.
      It really, really bothers me when people tell me that my JRA does not define me. I know that sounds very odd.* But hear me out. I never thought it defined me in the first place. In fact, I'm sure it doesn't. However, I think sometimes my JRA is all people see of me. Wrist splints and a slight limp can be the first thing people notice. But that doesn't mean it defines me, that means other people don't look past it.
      When people tell me that JRA does not define me, even when they're trying to be encouraging, it is somewhat offensive. It implies that I act like it does, or thought it did. I mean for goodness sake, half of the people who say that read this blog. Clearly they never read "Defined".
      Also, by saying, "Your juvenile arthritis does not define you," when we are not even talking about juvenile arthritis tells me that it does define me. What if the last thing someone told you was that your disease does not define you? Is that the last thing you would want to hear from that person? It obviously defines me if someone brings it up randomly! Was there really nothing better to say, nothing about who I am as a person and not as a disease?
      Additionally, no one ever tells you what does define you when they say that arthritis doesn't define you. If my arthritis doesn't define me, what does? Is it Jesus? Is it music? Is it writing? No one ever tells me. I want to know. If you don't think arthritis defines me, what do you think does? After all, what does define you is more important than what does not. If you look up a word in the dictionary, it doesn't tell you what it isn't. It tells you what it is. So if you are going to try to tell someone that they are not defined by their arthritis, you better be ready to tell them what they are defined by.
      I do not mean to be so angry. I just get really worked up. I'm truly infuriated right now, because I see this happen so much and I see so many broken hearts because of it.
      As with all things, there are exceptions to this. If someone says something along the lines of, "I am no greater than my disease,", then it is perfectly acceptable and even admirable to say, "Your disease does not define you." It is when it is random and spontaneous that it stings so badly.
      Writing this, I debate whether I bring on this "encouragement" myself. Do I focus too much on my arthritis? Should I even be writing this blog? Why not just keep to myself and pretend my pain doesn't exist? Why do I allow my phone to buzz with new emails, texts, tweets, and alerts relating to my arthritis? Why not block it all out? Am I shaping my identity around my arthritis?
     Personally, I think I should be able to keep a blog about juvenile rheumatoid arthritis without being told every five seconds that my arthritis does not define me. Because I know that, and I always have. I'm just scared that I'll let it, intentionally or unintentionally.


*As much as I hate it when people tell me that my JRA does not define me, it is NOT better to tell someone that their arthritis does define them. In fact, it's a million times worse. Luckily that has never happened to me.

Monday, June 10, 2013

Two Hours and Fifteen Minutes

     What kind of first-time rheumatology visit starts at 3:40? Don't labs usually close at 6? How in the world are we going to get everything done with so little time? 3:40 is so late for a first-time rheumatology appointment. I don't even know what to think about it.
     I have been to this hospital before, where I had a not-so-great rheumatologist. I was diagnosed with juvenile rheumatoid arthritis there. They promised me they were as sure as they could possibly be about my diagnosis, then retracted it a few weeks later. When I was diagnosed, I got all sorts of fun things. They gave me a whole backpack, which my family now refers to as the "arthritis backpack", and a pen that looks like a syringe. I got tons of pamphlets and amusing trinkets. It is sort of to make you feel better, I guess, after you've been diagnosed with a life-altering and incurable disease. While no material possessions can stop the ache of being chronically ill, I did appreciate the fun things. I have a feeling this appointment will not involve any fun things.
     I've got to stop thinking about it, or I will go crazy. Or maybe I already am. Not even a swingset could cure this kind of panic, and that is saying a lot. 
      I like to listen to music while I'm in the shower (and sing along, that is a must) so I turn my phone on shuffle. Then I put it in this giant can I have (don't ask, it's very odd) as a makeshift speaker and hop in the shower and jam out. Yesterday morning, the first song that came on the shuffle was "Unwell" by Matchbox 20. The lyrics are, "I'm not crazy I'm just a little unwell / I know right now you can't tell / but stay awhile and maybe then you'll see / a different side of me." My plan is the break into this song during the appointment if it is suggested that everything is in my head, as it often is with chronically ill patients. I'm totally kidding.
      As far as I can remember, the waiting room at the hospital I'm going to is pretty nice, with high-tech little play computers and colors and it is big and open. I'm pretty sure there are more glass walls than opaque walls, which is always nice. I love to be able to see outside. It is a perfect reminder that my world is much, much more than hospitals.
      I really don't feel the need to make this post any longer, so I'm just going to end it here.  I have about three hours and fifteen minutes until my appointment. 3:40 is coming way too fast.


Thursday, June 6, 2013

Hoping For a Miracle

     I have got to get my life together.
     I've been off methotrexate for a few weeks now, and I would just like to say how nice it is to not always feel sick. I ate dinner a few nights ago - a Sunday night, mind you - and didn't feel like I was going to throw up. If that's not a miracle, I don't know what is. I even had cake, people. CAKE. 
     Obviously there are tradeoffs with cutting your medication like that. For example, I cannot lean my head on my left hand without excrutiating pain in my wrists. My joints are all stiff, and it is surprisingly tough to type. My right knee is extremely painful. But can I just say that I feel great overall? I don't feel like I constantly have the flu. It is so liberating.
      My last day of school was Monday, and I have been so happy these last three days. Everyone was talking about how upset they are that freshman year is over, but I do not have a single ounce of sorrow in my body. It is all pure joy. I like learning, I really do, but I am ready for summer. And honestly, I think I learn a lot on my own time. I have a whole plan of books I'm going to read and things I'm going to do. As Mark Twain famously said, "I have never let my schooling interfere with my education."
     But these past few days, my focus has been pure relaxation. I've been waking up late and sleeping much better than I had been. I've been going to the pool with a close friend of mine. It is so much fun to feel like a normal teenager. I haven't had very many appointments (though that changes starting next week) and besides my right knee and wrists, I feel well enough to move around a lot. Sometimes my friend and I just lay on the pool chairs, intent on getting a summer tan, and talk about the oddest things. It is lovely. I love the pool, I love not going to school, and I love the summer heat.
     Last night, I went to a "Handbell Polishing Party". Basically, my handbell group is taking a break over the summer, as we always do, so we polished the bells to make sure they stay nice and clean. We finished about fifteen minutes early, and I offered to take our trash out to the dumpster (the bell polish stinks). The dumpster at my church is temptingly close to the swingset. Naturally, I could not resist venturing over to the playground. It was quiet and no one else was there.
      I. LOVE. SWINGS.
      It is a dream of mine, a radical, never-going-to-happen dream, that everyone will one day have a swingset and a guitar. I often think about ways to incorporate music and swingsets into mission work. If you think of anything, let me know. I'm interested.
      Seriously, I was in heaven for about ten minutes before my dad came to pick me up. It was wonderfully quiet. The only sound was the chirping of the birds in the trees. The temperature was probably in the mid-70s, which is perfect. It was the most peaceful I've felt in a really long time. Honestly, I only find true peace like that when I'm not with other people.
      These moments of peace are nice of course, but they don't last. On Monday, June 10th, I have my first appointment with a potential new pediatric rheumatologist. Things are at a standstill with my current rheumatologist, and though he has gotten me far in my treatment, I think he has helped me as much as he can. I'm excited for the appointment Monday, but I'm also terrified. I try not to be too hopeful. If I go in expecting too much, I will leave disappointed. I am praying for a miracle, as outrageous as it seems. I'm praying that I'll go into the appointment and she'll be able to pinpoint the exact problem, and give me an alternative to methotrexate, and be willing to offer new suggestions and try new treatments. But most importantly, I am hoping that she will see the person in me. I am hoping that she won't see me as a case that belongs in a medical textbook, but as someone who breathes and cries and screams and laughs. I am hoping that she will understand how much pain I am in and how much I would like to be free. I feel trapped in my arthritis. I long for freedom, but it is like I am stuck behind jail bars.
      I am not expecting a miracle, but I am hoping for one. I am hoping that this will be a breakthrough.
      It is actually really hard to write about this appointment, simply because I am so nervous. There are so, so many things that could go wrong. Of course, I'm not supposed to worry or be anxious about these things, but how can I not? How can I put it all aside? There is no assurance that everything will go well.
      Underneath all the thick layers of scars I have from bad experiences with doctors, I still cannot help myself from wanting to view them as a very young child does. I want to believe I will go to the doctor and s/he will make me feel better. Unfortunately, that is not how the real world works. I hate that every day. I'm frightened beyond belief for this appointment. I could really use some prayers.