Wednesday, March 23, 2011

Forever

   Today could qualify as an awful day with my arthritis.
   I found myself very upset as we were walking outside after third core. My language arts teacher had just showed me my score from the benchmark we took yesterday. Apparently I was missing a bubble. That almost brought tears to my eyes right there. Not that I was missing a bubble. That I knew I'd done all my bubbles because I check back a gazillion times like a freak. I calmly tried to explain that I'd been having trouble pressing down my pencil hard enough for the machine to read my answers. My language arts teacher assured me that next time there would be a teacher to bubble for me.
   More than anything, I am scared of forever. I can see having to lie in my heated blanket all through my birthdays. A vivid picture in my mind shows a wedding band not fitting thanks to a swollen ring finger. These things scare me to death. I didn't want to tell anyone that I'm scared. But I know I'm not alone. I know that they're are 294,000 other kids in America with arthritis that might also be terrified.
  Even with the amazing plan we have for dealing with my arthritis, I read stories all the time about kids who have their arthritis controlled when suddenly their medications stop helping. The positive side, though, is that I know that no matter what happens the doctors will be able to keep in under control somehow.
  A person in my science class asked me why I leave early all the time yesterday. I laughed lightly and then explained to her what juvenile idiopathic arthritis is and how it is easy for me to get frustrated with it. I said this casually. When I listen to myself, I sound so much more brave.
  I have been so cold today. It's from my medicine. It was some seventy degrees outside and I was shivering.
  I had to best time in water therapy yesterday. Stacie, another patient, and I were all around in the seven foot area and I was trying to touch the bottom of the pool, which is more complicated when you add arthritis. I joked that no one was leaving the pool until I accomplished it, and we all laughed for forever.
  So what do I believe lies in my future? Forevers like my forever with Stacie. Forevers like my forever with 'R'. Those kind of forevers. And some arthritis. Just to make me realize how great the other forevers really are.

Love,
Rachel

11 comments:

  1. If your cold u should go inside. Don't try to be normal! I stopped trying to be normal a LONG time ago

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  2. Addie,
    Going inside doesn't help much...I want to be normal health wise. I know we'll always be weird! Luv ya!

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  3. Rachel, you may not think so but you really are strong! I know that its hard and i cant even imagine how you go through all this but its o.k to be scared. Its o.k to be scared of the future. Its o.k to be scared of what will happen with arthritis. Its normal. Totally normal.
    ILY! =)

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  4. I am so NOT strong, but even so, thank you for your kind words. They mean the world to me.

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  5. i know what you mean when you say you hate it when people say "i understand". thats why the other day, when i said that, i took it back immediatly. just know that we are always, always there for you!!!!!!!


    hang in there!,
    Amelia

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  6. Aw no don't take it back you have great, honest intentions! Love ya!

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  7. Rachel! I just want you to know that you have touched me very deeply! This made me cry! You know sometimes I am so selfish... I see myself feeling sorry for myself because of my arm while one of my favorite people of my childhood is suffering so much more than me. You know rachel, this made me had an epiphany too. I am also scared. But really I have NO reason to be scared for myself.

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  8. I am glad you enjoy my posts, Amanda! Never downplay the significance of your own illness - everyone has their own troubles! I liked how you called me one of your favorite people from your childhood, and right back at ya. :) You have the right to be scared by all means, and I hope your surgery goes flawlessly! I'll praying for you, and if you need a visitor, I am certainly happy to stop by! Love ya!

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  9. Hi Rachel! Wow, it's been really great reading your blog. You remind me of myself when I was your age! I was diagnosed with JIA as a child and I'm now in my 20s. I can tell you that with time, living with RA becomes a lot easier. Some days I completely forget about it! When I was just diagnosed I also had a lot of thoughts about "forever" and what life would be like as I got older. But you know what? Even though the pain can make life challenging, my JIA has never really limited me in my goals. And it won't limit you in yours either, once you keep up this wonderful spirit you have! :) I wish you best of luck and lots of strength :)

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  10. Oh..I meant to add...the worries you have about your wedding band not fitting are normal! You should see what my hands look like after all these years 0_o I used to feel a little self conscious, but now I'm just really proud of my hands (and other joints) for being strong enough to withstand so much pain and damage. Don't worry about the wedding band - if it doesn't fit, you can always get it re-sized to fit perfectly ;) take care :)

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  11. Thank you for all of your kind words, Lily! You are an inspiration!

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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!