Sunday, March 27, 2011

Cinderella

   I am not good at talking. My presentation about arthritis (well it was really more about my pain syndrome, since that's what the diagnosis was at the time...) flat out stunk. Everyone said it was good, but I wish I could change lots of things about it. Like the way my voice was shaking the whole time. I was fearful of the world knowing what I am going through. Obviously, I am no longer fearful.
   I hate the way I almost cried when I was thanking my friends and my language arts teacher, along with all my other teachers. Being the over-thinker that I am, I spent the whole day wondering why I almost cried. Now I know why.
   I almost cried because I can never give anyone enough. I can never thank Dana enough for all the times she sat by me. I can never thank my language arts teacher enough for her email which read 'I am here for you, now and always.'. I can never thank my social studies teacher enough for all the times she hugged me and told me that she's there for me. I can never thank my rheumatologist enough for believing my pain even when his colleagues had different ideas.
   Simply saying thank you is just not good enough. As I thanked my science teacher for bubbling my answers on the benchmarks in the hallway a few days ago, I realized that she'll never know how much it meant to me. How much it meant that she would give up some of her time so that the ordinary kid with arthritis didn't have to go through all the pain.
  Long story short, I was presented with an opportunity to be recognized, and I very much dislike being recognized.
   I am scared of not being recognized for all of my faults. What about the stubborn me? I don't want other kids with arthritis to read it and think, 'Oh, that kid has arthritis, she's so brave, she's not scared. She's one of those perfect people who can go through anything.'. I don't want it to seem all Cinderella, fairy-tale like. Because quite frankly, it's not. Cinderella never did anything wrong. She wasn't stubborn, she never complained, and she got lucky a lot. Cinderella raises the bar for life a ton. Apparently you're supposed to be visited by a fairy godmother and then fall in love with a prince at a ball.
   Anyway, I'd rather other kids with physical challenges know that everyone gets scared, that everyone worries, and that it is hard. I want them to know that there are other people like them out there.
     I saw the original The Karate Kid movie. It was long and I was tired, but I got through it. Honestly, my attention span is not long enough. I learned a lot from that movie though. I learned that even though it didn't seem like he was learning anything, he was. Maybe arthritis will be like that. I also learned that people who shape mini tree things, fix bikes and faucets, and climb over fences well into adulthood are pretty cool. I don't think that was the point though...

Love,
Rachel

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

Friday, March 18, 2011

A Different Kind of Family

   My best friend. My mentor. She listens. She talks. She laughs. All while making me feel better. She sounds amazing, doesn't she? She is.
   Stacie. A physical therapist. She does my pool therapy. I love her to death. We have way too much fun for one to call it therapy. I anxiously await Tuesdays and Thursdays, the two days of the week I'm guaranteed to see her (unless she goes blind - inside joke).
   I can always count on her to be there, to support me, and to make me laugh, whether we're talking about penguins (this one's for you, Mary!) or bullying. No matter how bad my day has been, Stacie makes it amazing. Not many people can do that. She's so special in so many ways! I can't even describe it. Trying to write this here on a computer is just not good enough. Now that I'm trying, I'm realizing that this probably doesn't even sound very good. Stacie is just indescribably incredible. I wish every one of you could have the pleasure of meeting her in person. (Oh and Stacie, I'm still mad at you for not going to your dance class. Rainy weather is not an excuse!) Love ya Stacie!
   There are a lot of people in my life that are indescribable. I think I've realized this more with arthritis. For example, I already knew my parents were indescribable, but before arthritis, I never knew people like Stacie and my rheumatologist. Here's a very abbreviated list:
1) STACIE!
2) My wonderful rheumatologist
3) My teachers
   Thank you if you're in that list! Even if you're not, thank you for reading my blog. Furthermore, thank you to my friends, who are also amazing. I have too many people to thank and too little time!
   I am worried about my fingers, because today in science and at dinner, they turned BRIGHT red and it scares me because they hurt so bad and I know they're inflamed. I cried at the end of science. I was hurting, frustrated, and upset that they were hurting that bad all on top of my right knee and back killing me. My science teacher was extremely nice and came up to me. She offered to let me stay in her classroom for a while to give my joints a rest before starting the long walk to my first elective. My social studies teacher also came in. She mentioned that all my friends were worried about me. I love you guys! In the future, please don't worry about me. I'm always going to be fine. I just have to get through my roughest days.
   Anyway, after a couple minutes in the science classroom, I blurted out, "Well, I don't want to just stand here!" At this my science teacher laughed and my social studies teacher walked back to her classroom. My science teacher then procceeded to walk me down to my elective. She saw my untied shoe and offered to tie it for me (I can't; my back, knees, fingers, elbows, and wrists don't make it possible) but I stubbornly refused to accept her help.
   I am really super stubborn about help. It makes me feel useless. Yes, I have arthritis, but I am NOT useless, though it often feels that way. I know that physically I can't do everything, and I am real with myself. I let myself down when I can't do simple things like hold my pencil and tie my shoes. It frustrates me. I know I set myself up for disappointment but I don't know what else to do. Goals? I'm starting to hate them. They're just an open door to failure. I know I'll change my mind. Not yet, though. At least not today. Too much help tends to make us lazy. So I refuse to accept it. I occasionally accept it, but not often. Also, I feel awful for the people who probably feel obligated to help me. I am such a mess.
   I was just chatting with my friend Julia on Gmail. She called me stubborn. I laughed at the irony. I am in fact the most stubborn person I've ever met in my life. I don't believe in holidays where you have to wear a certain color (such as St. Patrick's Day). On top of it all, I expect myself to be perfect and I set goals I'll never reach. Oh and did I mention I don't accept help? J
   Family. What comes to mind? Probably your parents, siblings, grandparents, aunts, uncles, cousins, etc. But if you asked me who my family was, I'd probably say which one. Of course I have my direct family, whom I love very much. Then I have my school family, which consists of caring teachers and close-knit friends. Thirdly and finally, I have my medical family. My rheumatologist and Stacie are the main two in this group, followed by a line of patients who I frequently see at the pool. I love all of my families more than anything in the world.

Love,
Rachel

This blog post is dedicated to Stacie.

Monday, March 14, 2011

Defined

I promised you all I would blog today, so here I go.

   My ankle and wrist on my right side and my left knee have been particularly bad today. When at the computer lab in language arts, two of my knuckles on my left hand turned bright red and looked a little puffy.
   I get by okay with writing in class now that I have this cool grip thing on my pencil that my occupational therapist gave me. The most frustrating part of my day; science class. Why? Well, my joints are pretty bad there anyway, since I'm still recovering from walking to lunch and physical activity *cough cough recess*. Plus, science usually involves scissors, which I can't even think about using at this point.
   In science, I sit beside this kid named, well, we'll just called him 'R'. Anyway, 'R' usually ends up doing most of the work since I can't bend my fingers into weird ways and write and color and cut and stuff like that. Most of the other tables are four-person tables, but it's just me and 'R' at a two-person table. I feel so poorly for him! I can barely do the work and I feel awful when he is stuck doing it. 'R' is also one of the kindest people to have to deal with my arthritis. He is alway asking me if I need help and I can tell he genuinely cares. Why, he'll even tell the science teacher if he thinks I'm struggling and ask her to assist me. So 'R', if you're reading this, thank you!
   I have been refered to as 'the kid with arthritis' several times now, but not because of my blog. No, I named my blog after all those titles were thrown around. Do I mind? Of course not. It would be wrong to mind. If that's the only way they know me, then fine. Call me the kid with arthritis. It honestly doesn't bother me. I just hope that whoever thinks I'm that and that alone should probably get to know me better. I'd love to know them!
   So do I define myself as the kid with arthritis? Not singularly. I define myself as a sixth grader, spunky, creative, messy, moody, and fun. Arthritis is just on the side. It's like food coloring and water. Arthritis is the food coloring, and the water is me. You can put the food coloring into the water, and it will be very visible, very obvious that it's there. Yet when you taste it, you can't tell the difference between the colorful water and the plain water. (Trust me, my sister and I tested this out.) So everyone sees my arthritis, and refers to me like that, but when you get to know me, arthritis is really just on the side. Not that it hasn't shaped who I am. It has. Sure, being defined as the kid with a problem can hurt, but we just have to remember that the more vulnerable we become and the more we open up the less we get called that. It's fine when people call me the kid with arthritis. Because truly I am the kid with arthritis, at least in smaller communities. In bigger communities, however, I am a kid with arthritis.
   Why is my blog called, 'The Kid With Arthritis' then, if I am truly more than my disease? Well, living with arthritis is the topic of my blog, that's why. Also, I think that there are too many old people arthritis blogs and blogs from moms with children who have arthritis but not enough blogs from actual kids. No mom can tell how their kid feels, they can only tell how they feel about their kid. This is for all the kids with arthritis who want to know how other kids feel. But it is not only for other kids with arthritis. It's also for people with different challenges, or even with no particular challenges at all right now.
   Not that this is truly important, but I am making banana cupcakes right now, and they are soooooo good. I also made my own pizza dough (I used yeast and yes, Dana, it went well!) and I am making chicken salad for the rest of my family (all with the help of my little sister). I'm a vegetarian; none of them are. My mom doesn't eat red meat but that doesn't really count.
   My rheumatologist (whom I love to death) really wants me to see the original Karate Kid movie. Something about wax on wax off. I don't know. I'll see it, though. Time to hit the Demand channels and Netflix!
Love,
Rachel

Saturday, March 12, 2011

My Very First Post!

   Today, I will post my first post.
   Since this is my first post, and since you may not know me before reading this, I'll take some time to describe myself.
   My name is Rachel. I am a middle schooler. I am spunky, moody, messy, and creative. Recently, though, I have been diagnosed with polyarticular juvenile idiopathic arthritis, or JIA. It is in virtually all of my joints besides my hips, shoulders, jaw, and toes. I live close to and amazing hospital where I go for rheumatology. My rheumatologist is amazing. He is so incredible that trying to describe him with words would disrespect all the work he has put in to making me feel better. I don't have the classic inflammatory arthritis, but when he ran tests, he found the arthritis hiding deep inside of me.
   I miss that days where I could run around and fling a lacrosse stick. Luckily, I have a ton of amazing people surronding me. Everyone has been so supportive.
   So why am I writing this blog? Well, one of my friends told me about another person who was very dear to her and I read this person's blog. She, too, had an autoimmune disorder. Through her blog, she provided hope and inspiration to others and learned more about herself.
   Now that you know about what's happening to me, I'm taking a fresh start. I'm not looking back. I'm taking life as it's thrown at me.

Love,
Rachel