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

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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!