Friday, December 21, 2012

I Do What I Want

       Every day feels like a year.
       But flares can be pushed through, and battles can be overcome, and good will prevail. It's just been a long week. The kind of week that leaves me miserably exhausted. Predictably, I replayed my stupidity and didn't get my methotrexate.
       "I do what I want."
       I don't know how I got to using this phrase so much, but I do know that it's SUPER helpful. If you ever can't think of a response for something, just throw out an "I do what I want" and you're set, I promise. This started for me in school. I have a terrible habit of walking out of a class and forgetting what my next class is. Not wanting to stand stupidly, I pick a direction and just walk until I can remember. Most of the time, life likes to mess with me by making the decision that I randomly picked completely and tragically wrong. So I do what I have to do; I turn around. Of course, then I'll walk up to a friend and start talking with them and they'll say something along the lines of, "What were you doing, cause you, like, turned around right after you started walking." 
      "I do what I want." It honestly works perfectly. How can anyone argue with that? People just give an uncomfortable nod and another topic works itself into the empty chamber of conversation. I've discovered that this works well in a medical sense, too.
      "Why did you stop your Enbrel?"
      "I do what I want."
      Yeah, I stopped my Enbrel. It was giving me headaches and just making me feel generally crummy.  My pediatric rheumatologist said that it usually doesn't come with side effects, but it did this time! He's actually going to contact the FDA about it, because apparently he had another juvenile arthritis patient who stopped Enbrel because of headaches as well. I'm glad to be off the Enbrel, because my headaches vanished and I sure don't mind not having to be stuck three times (now it's only once for the methotrexate). If anyone else has had headaches along with Enbrel, please send me an email, I'd love to discuss it more and try to do a little detective work.
      I was a teensy bit worried (okay, a lot-a-bit worried) that my doctor would be frustrated with me for stopping the Enbrel. I have a sort of "silence" problem in hospital rooms. I go into appointments angry and desperately needing to explain my current situation, but then once I'm in there and in pain I just don't say anything. Then, I walk out without the results I want just because I couldn't bring myself to speak up. At my last appointment though, I was clear and articulate and he was not upset at all (probably since stopping the Enbrel has not affected my joints at all). Actually, he was very understanding.
     I hate medication. It is a terrible and ungrateful thing to say, but I really do. I oppose the whole "baby aspirin a day" thing and only take my medicine when I feel like I need it. I'm not one of those people who completely rejects all medications and believes that herbal leaves or a special diet or more self-confidence or God will cure me, but I just don't like extra stuff floating around my system. Especially if it's not crucial. Of course, that ends up backfiring a lot, when I take NSAIDs too late and feel awful because my arthritis is not being controlled.  
     Sometimes, with my arthritis, I wonder if I'm good enough. I often don't have the energy to go out with friends. Does that make me a bad friend? I don't always feel well enough for church activities. Does that make me a bad Christian? I have to email all of my notes and do a lot of things with accommodations. Does that make me a bad student?
     There are so many things about arthritis that I never prepared for.


Love,
Rachel

1 comment:

  1. My adult rheumy told me before starting Enbrel that headaches are a common side effect if that helps! xx

    ReplyDelete

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