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.



  1. I'm praying with you, Rach. I can relate to so much of what you said in this post. Hang in there and keep fighting/advocating for yourself! Love you!

  2. Rachel,

    I do hope that this doctor will help you! Which doctor are you going too?


  3. Hang in there, Rachel, praying for you! I completely understand about the doctors. It's so hard to stay hopeful and positive when you've had terrible doctor experiences... and you also don't want to get your hopes up about treatment and then be disappointed.

    I hope everything DOES go well though and that there will be a miracle. You never know :)

  4. Rachel, you are truly an inspiration! My family constantly keeps you and your family in our prayers. Although, I don't fully understand what you go through daily, you seem to always stay positive no matter the depth of the news. You're a strong, bright, and courageous young lady. Most of all a fighter. You're amazing! Praying for miracles.

  5. I just wanted you to know that I love your blog. I also am a 15 year old girl with JRA, and everything you say seems to be so relevant to my life. Stay strong, and I hope your doctor's appointment went well!


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