Monday, April 15, 2013


      I would happily accept a little more control over my life. Actually, a LOT more control. This post is a suggested post from a friend who would rather remained unnamed.
      Dealing with autoimmune arthritis takes a whole lot of patience. I don't have a large or small amount of patience in my opinion; I would consider myself average. Of course, I strive to be patient, but I just think I'm pretty typical when it comes to that trait. I find not being able to participate in activities to be extremely frustrating. Luckily, people are fairly understanding, especially my teachers. I've heard many horror stories about teachers who are cruel and ignorant to other kids with arthritis, but I'm fortunate enough to have never had a major problem with any of my teachers, though some are quite aggravating. 
      Having autoimmune arthritis means that I have to be conscious of how much I am doing. I cannot afford to overdo it (which I constantly do) or I will feel completely exhausted and defeated later. I've gotten better at this over time, but I generally want to do what seems fun to me. I think this is perfectly normal, because what human doesn't, but I have to remember that what is fun for fifteen minutes has the potential to throw me into a flare lasting many days. 
      A lot of times I go to things and push myself to try new things because I genuinely think I can do them. I'll show up somewhere (take school, for example) feeling relatively fine. The pain is not unmanageable and I still feel able to accomplish what needs to be accomplished. However, I wear out very quickly and I'm stupid enough not to anticipate this. I often start out feeling half-okay and then go downhill. I mean, I've fallen asleep several times in the cafeteria. It's a problem. 
      For this reason, there are few things that are more helpful than a schedule. When I have a schedule (or even just a general outline) of what is going to be happening at an event or in class, it takes about a thousand pounds of weight off of my chest. If were are doing major activities, I prioritize a certain one, like activity 3 for example, and then I know to take it easy on activities 1 and 2. I can space out my energy levels to make sure that I get to do everything I want to do. I can also know ahead of time whether or not and when I will need to sit out. That said, it is important to keep in mind that autoimmune arthritis has some patterns but is also very unpredictable. I may feel better than I expect or worse in a single second. Even with proper spacing and taking it easy, my arthritis can flare. Sometimes I do more than I thought I would be able to and end up feeling not too shabby. 
      People don't tend to realize that juvenile arthritis takes a toll on my whole body. Not only do my joints hurt, but my stomach aches from medications and I'm severely fatigued (speaking of that...I promised myself I would take a nap today....and I didn't...). It is really hard for me to do a lot of "normal" things, and that is beyond frustrating.
      Prioritizing has become astoundingly important as my disease progresses. Prioritizing my physical activities has taught me a lot about prioritizing my life. At the top of everything has to be God, and then my family and my friends. Grades are important, but they aren't everything. I personally think adults put too much stress on school. School is not the world. In fact, it's a very small portion of it. Everything can wait if someone you love needs you. Everything. I think that's really easy to forget, but worth remembering. 
       Now, I'd like to share with you one of the best pictures I've ever taken. This is one of the bookshelves in my house. No books were rearranged in the production of this photograph. 

       Just take a moment and let that sink it. The "Raising a Child With Arthritis" book is in between four books about raising dogs. I think I laughed for a good ten minutes straight after observing this. 


Monday, April 1, 2013

Forgetting the Words

     "It's like forgetting the words to your favorite song, 
      You can't believe it, you were always singing along.
      It was so easy, and the words so sweet, 
      You can't remember, you try to feel the beat."

      I just found Regina Spektor's song "Eet" a few weeks ago, but I can confidently say that it is one of the best songs I have ever heard in my life. It isn't thought to be a particularly sad or depressing song, but I find it tragic. To me, it's one of the saddest songs I've ever heard. I'm not even going to try to lie; I teared up the first time I heard it. The lyrics encompass so many different things. 
      Since I am basing this blog post off of the song, it would probably be beneficial for you to listen to it first. If you don't listen all the way through, then shame on you, because it is absolutely beautiful. 

    This song, at least to me, is about change. Something that changes so drastically that you can barely remember how it felt before. I was different before all of this set in and flipped my life around. It's like when I try to remember how it felt to run around freely with my friends, or play games in the gym at school. For a long time, that was my "favorite song". No matter what happened during the day at school, when my friends and I had our short recess break in middle school we ran a mile. Consistency is what gives us our favorite song. I was so used to singing it, so used to it that I failed to realize how much I loved it. 
     However, when much of my physical ability was torn away from me it became harder and harder to sing the words. And whenever someone else sings the song, in this case runs around and participates, I feel horribly alone and left out because that used to be my favorite song, too. Now I've forgotten the words. 
      I don't remember exactly how it felt to not be in constant pain. I lay awake many, many nights trying to "feel the beat" because I just can't believe that I can't quite remember. Of course, one of the biggest questions in my life is whether or not I will ever be able to remember the lyrics. Will I ever be able to run and jump and dash up the stairs again? Or is that song forever lost? Do I need to pick a new favorite song? I sure don't want to. I don't want to let go of the old one. 
      I don't want to let go. 
      I wish I could sit here and write that I have finally achieved remission. But I haven't. Right now, I'm not on an uphill track with my arthritis. So far, none of the chemicals they've forced into my body have helped me remember more than a few lyrics. However, I am hopeful that things are going to get better. They either get better or worse or stay the same, and I don't see any reason why they shouldn't just get better.
       Every time something big happens in our lives, we think back to our "favorite song", or how things were before. No one warned me that I would be forgetting the lyrics. No one gave me a heads up. Above all, "Eet" reminds me that most things in my life will go from being a reality to a memory. The experiences I have, the people I know, even things like my health that I didn't expect to go so quickly. It's all here one day and the next only a memory.