Wednesday, December 21, 2011

Little Things I Love About Life

1. I love how two of my teachers emailed me at the exact same time down to the minute a few days ago. What a coincidence!

2. I love being in Super Target and cranking up a model radio on a local hit station to hear Adele's pure voice singing "Someone Like You". I instantly appreciated the song and proceeded to half-blast it. Over the course of that shopping trip, I saw eight people stopping, enjoying the music, and even singing along. I'm glad to know that I can brighten people's days.

3. I love social studies. I have the best friends in that class and we share the weirdest moments (Who watches a hen lay an egg? Sicko!)

4. I love waking up to purple light shining into my light blue room and music playing softly.

5. I love making cookies with my two favorite people in the world.

6. I love playing with toddlers and watching their faces light up at things I became disenchanted with years ago.

7. I love when it gets really cold and I get to use like twenty blankets and everything but my head is under the covers.

8. I love it when a song comes onto the radio that I used to love but I sort of forgot about! (Funny how we can still remember the lyrics to songs we last heard a year ago...maybe it's just me).

Shout outs to Annie, Gen, and Taylor. You guys are the best!

Love,
Rachel 

Sunday, December 18, 2011

Another Poem

    I am in a writing club at school (surprise, surprise) and we had to create either a short story or poem using five words randomly selected from the dictionary. My words were equipment, let up, Canada, develop, and orange. Due to my obsession with poetry, I went for a poem. Maybe you'll like it!

She was traveling,
Getting away,
From her tiny,
Miniature world.

Canada wasn't,
Too far ahead,
Only a few,
Million moments.

Her equipment,
For life was packed,
In a small duffel bag,
And a huge heart.

The rain let up,
As an orange sunset,
Took its place,
In the mournful sky.

Her hair was,
Beginning to develop,
A curly texture,
Due to the humidity.

Millions of moments,
Until Canada,
Until peace,
Until then.

Love,
Rachel 

Friday, December 9, 2011

Pancakes

   My arthritis doesn't stop me from doing everything. I have been making some pretty wicked pancakes with my friend 'D' every time she comes over. We made a letters, stars, swirls, hearts, and perfect circles. Last time we made them, they were either burned or practically just batter. This time, however, we passed!
   "D, how do you expect me to flip a swirl?" I asked. I was flipping and monitoring the pancakes while she was pouring the batter in unique shapes on the pan. We laughed as I attempted it, which only broke it into two pieces. The second piece was in the shape of a liver. So I ate the liver pancake, and she got the swirl.
    We don't make full-sized pancakes, only Silver Dollars. So it took us about an hour, even though we had two pans going at once. I have determined that I like experiencing the process more than eating the pancakes.
    I read a recent blog post where the author wrote everything that was on her bulletin board. I decided that I will do this, just for the fun of it, and for your amusement.

4 Drawings - One of a sunset, one of a person, one of a kitchen, and the other a person as well. (All drawn by me, except the kitchen one, which was drawn by my sister)
Foam Cross - That I made in like 2nd grade in Sunday school. It says faith and has hearts and a dove (all stickers)
California Postcard - My fifth grade teacher went to California and brought us back postcards.
Fancy Name Thing - I drew it, and it says Rachel, with different colors around it. Hard to explain.
Birthday Card - From my friend 'D'!
Note - A very sweet letter from my friend 'A'.
Amusement Park Ticket - From our 6th grade field trip
Bakery Contact Card - I got it after they let me try a free cupcake before a running race.
Bookmark - My sister made it, and it says my name.
Build-A-Bear Certificate - From last summer. I'm convinced that I'm secretly five years old.
Hospital Bracelet - I got a pink hospital bracelet because the nurses love me. I am showing it off. ;)
A Giant, Orange 'R' - That my friend made for me as a birthday gift.
Collage of Song Titles - My friend randomly made this for me, and I absolutely adore it.

That's all for now!

Love,
Rachel 

Tuesday, November 29, 2011

Sigh

   It is a day where you just sigh. What else is there to do?  Note to self: when you are mad at the person who wrote a stupid pamphlet about a certain medical condition, it is very satisfying to rip up the pamphlet and throw it into the geometry class garbage can.
   I think Adele deserves a movie. Not like a biography or documentary, more like a "Mamma Mia" thing, where the story line is based on all of ABBA's songs and they are all included to fit the current scene. It is actually quite hard to explain. Even so, I think it would be a great idea and I would very much appreciate bragging rights on this for the future, thank you very much. I just got completely off track. *Sigh*.
   I have just been so sluggish lately. I was very sick from my medication yesterday, and I had to stay home from school. I'm pretty sure I've already used up all of my sick days for the year. The shots hurttttttt! My mom has to give them to me, and as much as I hate to admit it, she's doing a pretty good job. I have figured out how to practically freeze my arm to the point where I don't feel the needle but just the medication going in. I freeze my arm so badly, though, that I am begin to ponder if the freezing hurts more than the needle would. However, I am not willing to take that chance!
   "Love" is my go-to signature thing. Some people say "sincerely", others "yours truly", and some "thanks", and though I do occasionally use the latter, I find that "love" is always appropriate. Maybe some people see it as ignorant, arrogant, and unprofessional, but I see it as kind and gentle. No matter who you are, Godly love exists for you, so it doesn't matter if I'm writing "love" to my teachers asking for make-up work or to my best friend. "Love" is universal.
   I really hope that there is another kid with arthritis out there who is reading my blog or who has found it. I really hope I make a difference.

Love,
Rachel

Wednesday, November 23, 2011

Letters

   So I have already told you about how crazy my family is in stores. I will proceed to tell you that at an apartment store the other day, we found a huge bin with packs of napkins in it. Each pack of napkins had a letter of the alphabet on it. We were digging through it trying to spell out our names when my dad practically shouts, "First one to find all of our initials wins!" (He meant the first initial of each family member.) Instantly, we became freaks, digging through the bin and clinging on to the important letters while looking around frantically to see who was winning. I don't remember who won, but I remember thinking, I am going to remember these moments. Now I'm laughing, realizing I used the word "remember" three times in the past sentence. Normally I would change this, but I think I'll just leave it this time.
   I am going to have to start physical therapy back *tear tear*. I really don't like physical therapy, as it is very painful and quite frankly inconvenient. But I guess I need it, because lately I have had some problems with my knees and ankles just collapsing on me. Luckily, I have only fallen at home, and then once on the carpet and once on a sofa. I fear that it will happen at school. I got my second set of corticosteroid injections, but my crazy body had some serious problems and they almost kept me overnight. Thank goodness they didn't, because I would not have been a happy patient!
   I felt the injections (again). Grrrrr. It may not be a big deal to most, but I don't like the idea or feeling of very long needles being stuck straight through my joints. I wanted to yell - in fact, I thought I was screaming for them to stop and put me to sleep, but the sedation had frozen my tongue. If I ever get these again, you can bet I will not be feeling them, because I am going to have some very serious talks with these doctors. Ridiculousness! I was extremely weak after the injections, and I was wheeled out of the hospital. I literally could not  stand up without falling back down; it was an odd sensation. Anyway, stubborn little me went to school the next day even though I could barely stand in the shower. I guess this was what you could call a mistake, because I had to be wheeled down to the front office to call my mom to come and pick me up just about forty-five minutes later.
   This seems to be a dilemma I am constantly facing. How do I balance my wants to be normal (health-wise) with my desire to not be in pain? It may sound like the same thing, but it's really not. For example, I have trouble in cello with bowing, as it is extremely uncomfortable for my wrists and fingers. Do I take frequent breaks to spare me pain? Or keep going with tears in my eyes just to fit it? So many decisions no one could have prepared me for.
   I am proud to say that I have already chosen my 2012 Halloween costume: the elephant from the Paradise music video. It is going to be GREAT!!!!
   My kitten mauled my toe last night. My sister is like, "Ow, that must have hurt." My response?
   "Yeah, but my arthritic knee hurts more."

Love,
Rachel





Saturday, November 5, 2011

Don't Speak

   I am making a little Hall-of-Fame type thing for things I hate to hear about my arthritis. I have received all of these comments, and I need to vent.

1. "It's going to be okay."
    Why? Because it's not okay with me. Of course it is okay with you. You don't live in constant pain.
2. "I understand,"
    Why? Do you really understand? Think before you speak, or just don't speak at all.
3. "You're so brave,"
    Why? I don't feel brave. I feel like you misunderstand me when I call you that. Plus, it makes you impossible to talk to, because I don't want to ruin your image of me.
4. "My grandma has that,"
    Why? So basically, you're calling me old. And your grandma and I probably don't even have the same type of arthritis. On top of that, it's different being young with arthritis.
5. "Try insert medication/therapy name here,"
    Why? You don't know me, what medications I'm on, or what side effects this stuff comes with. This decision is between me, my parents, and my doctors.
6. "You seem to be doing better,"
    Why? I don't feel any better, to be honest. This makes me want to scream. I am not the hard shell I sometimes appear to be.
7. "I don't believe you. You're too young."
    Why? Do you honestly think I would think of a disease called polyarticular juvenile rheumatoid arthritis just off the top of my head? Of course I'm telling the truth! If you want to call the one pediatric rheumatologist left for me in my area, feel free to do so!
8. "I know someone who has much worse arthritis,"
    Why? It makes me feel like my disease is unimportant and I shouldn't be feeling any pain. Regardless, I am. So don't even bring it up.
9. "I read about a woman who tried acupuncture (or something of the sort) and she feels great now!)
      Why? Have you noticed that we're not the same person?
10. "Do you still have it?"
      Why? Of course! This just brings my mind to when I was diagnosed, something I try to avoid thinking about.
11. "You're lucky you don't have to (write notes, walk around, carry your book bag),"
      Why? I think this is perhaps the worst of all. I would give so much to be able to do these things. You are lucky you can write notes, walk around, and carry your book bag. I itch to run. I want to help carry things and write my own notes. I don't consider myself to be "lucky" for not having to do these things.
12. "Stay positive,"
      Why? Sometimes, I just need someone to empathize.
13. "You don't really need that," *Gestures to my wheelchair.
      Why? First of all, you wouldn't know. Second of all, what are you trying to say here? Third of all, I can go through my arthritis from early July 2010, if you want. I can talk to you about every time I haven't been able to walk down the hall. This one makes me want to scream, "SHUT UP!!!!!"

   Sorry for the angry blog post.

Love,
Rachel










Friday, October 28, 2011

The Rarest Pencil Sharpener of All

   This year, I am taking geometry.
   Yesterday, we had a pretty big test. I use a fatter pencil and put an even larger pencil grip around it to help with my fingers, though my efforts against arthritis always seem to fail. Anyway, I needed to sharpen my pencil. Interesting, huh? So I walked up to my teacher, Mr. B, "Excuse me, is there a pencil sharpener I can use?" He asked another teacher who pointed me to one. Usually, my pencil fits. This time however, it did not.
   Disappointed, I explained the issue. She let me try another one, but it didn't work either. So I was forced to venture out of the media center and to the guidance office, right across the hall. To my dismay, no one was in there and I was not about to set off any alarms or get in trouble for prodding around for a pencil sharpener. Quickly (and, as you may guess, painfully) I went to the next nearest classroom, a 6th grade one. But they had a substitute and not wanting to take too long, I scurried over to the one next door.
   "Do you have a pencil sharpener I can use?" I asked.
   "No, I don't. I'm sorry." With a sigh, I power-walked to the next classroom.
   My language arts teacher from last year welcomed me in. "Do you have a pencil sharpener I can borrow?" I pleaded desperately.
    "Yes, I have two." Thankfully, one of them worked.
    All in all, the process took about five minutes, and they were already giving test instructions when I walked back into the room we were testing in. At that point, I had a swollen knee, painful wrists, ankles, and hips, and red fingers. I completed my test trying my hardest to concentrate, and I did fairly well, but I could've done better.
   If you haven't figured it out yet, I skipped seventh grade and I am now in eighth grade. I am glad to say that it is going very well. I think I need to stop preparing myself for the worst. I have made so many friends. The only itsy-bitsy problem (oh, I miss my Itsy-Bitsy Spider days) is that they are all sort of perfect. Of course, I know this can't be true. Somehow, I miss the chaos, the laughter, the obvious flaws that made me feel so connected with my peers from 6th grade. I will give it time, as that is all I can do. It's not like I'm going around saying, "Look, I need you to tell me a problem you have so I can know that you're not perfect and I can feel better about myself and feel more at home here."
   I got to see Stacie a yesterday! I haven't seen her in months, and I missed her so much. It's great to know that some things in my life are consistent.
   Lastly, I really want to learn to play the harp. I don't know why, but I do. By the time I'm 21, I want to be able to play:

1. Piano (done that!)
2. Handbells (done that!)
3. Guitar
4. Cello (done that!)
5. Harp
6. Ukulele

   So guitar, harp, and ukulele are the only ones left. I figure guitar and ukulele will sort of go together, but I honestly have no clue how I'm going to learn to play the harp. Maybe my Christmas wish will be for a ukulele (yes, I do think they're adorable, don't judge).
   My arthritis may make it hard to play some of these things (cello is extremely painful), but I WILL get there. It's called determination. I have absolutely no doubt, however, that it will come with great Mrs. D, Mrs. I, Mrs. F F I, Mrs. C, Mrs. U, Mrs. L T Y. (I got that from one of my favorite movies, Matilda, even though the book is 20 times better.)

Love,
Rachel
 
 

Saturday, September 17, 2011

My Inner Artist

   Last night, around 11 o'clock or so, I painted. Yes, painted. I painted a story, a sunset in a forest, and a splatter picture. The story would look strange to anyone but me. It is mostly a collection of different sorts of lines placed in a way that explained so much of my life. My sunset was gorgeous, if I do say so myself (but the trees weren't as good as I would have liked them to be). The sunset was made up of pink, yellow, lavender, and sky blue streaks on yellow paper. My "splatter" picture was very abstract, and all I did was jerk the paintbrush so the paint would fly across my paper.
   I had fun.
   I find that now that I have been physically limited, I have turned to more artsy things. I am currently involved in painting, Gingerbread (trust me, VERY artsy), hand bells, chorus, cello, piano*, making photo books/calendars/cards with Shutterfly, and drawing/sketching. So I guess this is the "new me".
   Still, I miss the athletic me.

Love,
Rachel 

Monday, September 12, 2011

My Very Mature Family

      Most people would describe my parents as serious and quiet. Don't get me wrong - they are HUGE on fun (probably more than me, but then again, people say I'm serious, too). They are just more calm around co-workers and pretty much everyone but me and my sister. My dad is ALL the time cracking jokes he learned from his dad, and my mom gets so into some things that no one can hide their laughter.
      As we were grocery shopping, I learned of all the very immature things my parents have done in stores. One of my family members once went on the speaker and said, "Child hurt in the toy aisle," just to get a laugh. My grandmother of all people stuck toilet plungers down the aisle and positioned them so that no carts could get around them. As a child, my grandfather peeled all the bananas in the banana section. A scene from my dad's childhood:
      "So you're talking in my class? Do you want to teach the class?" The teacher asked my dad.
      My dad walked to the front of the room. "Okay, class dismissed." He said contently.
I had to share these stories because they are the secret to success in life; being able to laugh. Sometimes it's nice to know that my seemingly perfect parents have it in them to just have fun sometimes.

Love,
Rachel

Friday, August 26, 2011

My Day

   Reflecting on the day, it was very, er, interesting. It began with me scurrying around as usual, then my mom dropping me off at school. I began my day by talking to my friends. Then I tripped and fell on the way to class. When I got to chorus, I spent five minutes straight thinking about nothing but one teacher who had changed teams and all the pride he had in his old team. In language arts, I drew a pig. In social studies, I looked at my teacher's wife's driver's license from a while ago. Then in science, well, I'm not completely allowed to say what happened there, but it was pretty much the weirdest most fun science class ever.
   Next, in math, we had a sub. I was so amazed that one person could talk while the rest of the class was silent. I mean, seriously. I looked like a kid with twenty boxes of sharp crayons.
   When I got home, I had a deep conversation about dolphins, drowning, and overly large houses. Then I had an online conversation with one of my sorta-kinda friends and found out that he is one of the most amazing people I have ever met.
   So that's my day.

Love,
Rachel


Monday, August 22, 2011

The Glass Box

   I know it's like the longest poem ever but the lines are short so bear with me! I wrote this poem on a really bad day and I hope people in every type of "negative" situation can relate to it. 

She’s trapped in,
A glass box,
She’s helpless,
She knows,
What the world,
Around her,
Looks like,
But fate traps her,
And won’t free her.
People try to help her,
But they can’t,
And so they move on,
With their own,
Beautiful lives.
Some of them come back,
To spend time with her,
But they don’t understand,
How badly,
She needs to get out.
Specialists come and see her,
They tell her to live with it,
They are not,
Wise enough,
To know that she’s screaming,
She screams until,
Her throat hurts,
But the sound is muffled,
Through the thick glass.
She can’t help,
But feel like,
Merely an infant,
Defenseless and small,
Helpless as always.
And everyday,
Her hope shrinks,
As people and doctors,
Pass by and stare,
At her funny gait.
They’ve given up,
And she doesn’t know,
What to do,
Because no one,
Can relate to her,
She desperately needs,
A hand to hold,
Not just a friend’s,
A caregiver’s.
She’s lonely,
No one understands,
As much as they try,
They keep failing,
They keep losing.
She can’t help,
But wonder,
What she’s missing,
As she looks around,
From her box of glass.
She cries every night,
And no one knows,
The whole story,
All of it,
Thrown at her,
At once,
She’s overwhelmed,
She can’t take,
More burdens.
So she lets go.

Tuesday, August 9, 2011

The Lord's Gift

   I did not have any symptoms of arthritis in fifth grade. In fact, my teacher once told me not to be in the front of the line because I walked too quickly. (Who knew that six months later I would not even be near the front.) I just wanted to clear this up because this had nothing to do with why I had to sit out on Field Day.
   Anyway, a couple days before Field Day, I cut my head open slightly beside my eyebrow. I had to go to acute care and it was bleeding like crazy. One of the teachers even used her sweater to stop the bleeding. I had to have the wound glued together (yes, glued. It was a substitute for stitches.). Sadly, the doctor informed me that I would not be able to run around until it healed.
   So I sat patiently through the first activity. I was bored, hot, frustrated, and tired. On top of that, I was lonely. God, I need a friend. I prayed. We moved onto the next activity. I looked up into the sky and saw an orange butterfly fluttering carelessly around above my head. Instinctively, I stuck out my finger for it to land on, even though aside from the ones in museums they never do.
   Maybe that is why I was so surprised when it gently curled its legs around my finger. I smiled, holding my finger still. It's beautiful. I thought. Plus, it was orange, and orange is by far my favorite color. To my dismay, my class was moving to the next activity, and everybody knows that as soon as you move when a butterfly is on your finger, it flys away. "Good-bye, little butterfly," I said aloud. I stood up and rested my hand down, expecting it to fly away. Instead, it flew right up to my shoulder. As soon as we were at the next activity, I placed it on my finger with ease. It was in that moment that I connected the butterfly with my prayer. I smiled up into the sky and thanked God.
   That butterfly stayed with me throughtout the whole Field Day. Of course, it would occasionally dance away for a few moments at a time, but it always loyally came back. Everyone around me was amazed. I was, too. I loved that orange butterfly. It was fairly big for a butterfly but still little comparatively. When it was time to reenter the classroom, I spoke very lovingly to the little butterfly because I knew God had sent it to me, "Alright, I have to go now. Thank you little butterfly!" I watched it fly away. "Thank you, God." That's what it's like to have God. You are cared for and loved, and you always have a friend.
   Right now, I have "Be a Butterfly" written on my hand, to remind me to always be the friend that makes someones day memorable.

Love,
Rachel

Saturday, July 30, 2011

A Poem of Thanks

   I originally wrote this poem to my rheumatologist (in February, when I was pleased with my treatment program), but a lot of it also applies to everyone who has helped me in my struggles with arthritis, including my teachers, friends, physical therapists, doctors, blog-readers, family, and millions more.


  
I cried and you,
Comforted me,
I screamed and you,
Heard me,
I pleaded and you,
Listened.

The night before,
I cried,
No one could,
Truly understand,
The pain and,
The hurt.

I only knew,
The darker path,
You provided,
A sanctuary,
Of healing and,
Of truth.

Thank you isn’t,
Nearly enough,
Because when I was lost,
You pulled me out,
When I grow up,
I’ll be like you.

No one explained it,
Without me feeling,
Utterly crushed,
But you provided,
Hope and a future,
To a sick little girl.

Soon I’ll feel better,
Because you cared,
You found the reason,
When no one else could,
My gratitude for you,
Will never cease.

I cried happy tears and you,
Kept on talking,
I laughed and you,
Laughed with me,
I smiled and you,
Smiled. 

Saturday, July 2, 2011

Range of Thought

  My range of motion is improving greatly with my muscle relaxer. I have also started biofeedback, and I find it interesting as well as beneficial.
   I was thinking about my range of motion and then thought about what my range of thought is. I can go from feeling so happy to very distraught and upset. Not quickly, but gradually. Is it better to have a larger range of thought or not? I cannot seem to decide. I guess it depends on where your range of thought is. If it's from like Under-the-Weather to Depressed, then that's not good, but what if it's like Satisfied to Ecstatic? Is that better? Would we really be humans, really have hearts if our range of thought was not larger than that?
   How could we see the needs of everyone else if we were always happy? Could we really watch clips about starving children and neglected animals and still be happy? Sure, those clips don't have to affect your whole mood, but if they don't touch your heart your range of thought might be a little too high. How could we ever learn? A bigger range of thought brings lessons, understanding, and hope.
   I took full advantage of the swing set while I was on vacation. It was such a lovely moment - the sky beginning to darken, the clouds drifting overhead. Three little boys who were playing on the playground as well were burying their feet in the sand. I felt as if I was flying but experienced a limited amount of pain. It was the most movement I've ever had without excruciating pain. I thought, I could stay here forever and be perfectly happy...Then No. I opened my eyes immediately. I could not stay there forever and be perfectly happy. That was a selfish type of happy; good to indulge in every once and awhile but unhealthy if one stays too long. It is okay to have these moments but then we must stop the swing, rejuvenated and ready to take on harder tasks.
   Happiness is only recognized if sorrow is felt. Otherwise, happiness is more like numbness. If we are always happy, we do not take enough chances and make enough mistakes.
   Hurting is part of being human. We're all going to hurt physically and emotionally at some point, and if we don't we obviously haven't summoned up the strength, courage, and humility to learn lessons to make a difference.

Love,
Rachel

Thursday, June 30, 2011

Prayers for Bella

   A dog is a man's best friend, right? Well, Bella is my best friend. She is my German Shepherd. I love that dog to death. She is 5 years old now, and we got her as a puppy. Bella and I have some good ol' memories.


   She was staying at the kennel for a little while. She had been having some trouble with her hind leg lately and when the vet did x-rays she found arthritis in her knee (I feel ya, Bella!) and a torn tendon. They decided to perform surgery on her. Anyway, we were eating breakfast when my mom's phone rang. She ran out of the restaurant to get reception and found signal outside of the restaurant. We could see her through the window, and we could tell she was talking to the vet. It worried us as she paced back and forth and looked sorrowful. Instantly, we all became frantic and anxious.
   I had a weird feeling. I wanted her to get off of the phone and come tell us what happened to end the feeling of suspense. At the same time, I was worried something very bad had happened, and I didn't want to lose the normalcy in my life. Bella is always there for me, even when people aren't.
   My mother finally got off of the phone after what seemed like eternity. I had eaten a few bites of my pancake but couldn't eat anymore without feeling sick. My mother came back in and sat down. "What happened to Bella?" I asked instinctively.
   "She's okay," my mother said first, sensing my urgency. "They couldn't do the surgery. She has some sort of bone deformity, so they're going to do a different surgery to fix that leg. It will take six weeks of recovery instead of the two or the days the other surgery would have taken. They can't do the other surgery because she would have a high risk of fracture." We all breathed a sigh of relief. Still, I felt awful. My poor Bella!
   "She's also going to have to go to physical therapy. She'll need to go on this underwater treadmill, and there's a place in (city) that she can go to." We all sort of laughed at the thought of that.
   "Maybe I'll just bring her along with me. Think I can convince Stacie to exercise Bella, too?" We all laughed.
   So now Bella and me and both in physical therapy. I feel so bad for that dog. She has had several surgeries, because she also has this calcium buildup thing in her neck. Please pray for her to have a full recovery.



Sunday, June 26, 2011

Wondering

   Everyone I know agrees that I never give my mind a break. I am always, always thinking. Lately I have been wondering about my future. I very strongly want to be a missionary doctor. But who knows? I have been known to dramatically change, question, and view things differently on the spot.
   Maybe there is no use in wondering.
   Maybe there is.
   I had a strange dream the other night (as usual). There were two spacecrafts and about ten kids from my science class were in one of them, led by my science teacher and a lady I met when some kids stayed at our house. In the other spacecraft was another science teacher in my school and abut twelve of his kids. Anyway, it was about 5:00 or 6:00 a.m., and the spacecraft was scheduled to launch at 8:00 a.m. The decision I had to make was whether to go or not. Like all space missions, it was risky and dangerous. This one, however, was particularly risky and dangerous. Yet it was a great opportunity. I couldn't decide. Everyone was telling me different things.
   I woke up frightened and frantic. I sat up, ready to sort out my feelings, and thought, Why didn't I go? It would be amazing... Then it hit me: fear. I wasn't going because of fear.
   I am not afraid of death. I am Christian, and I have accepted my ticket to heaven as Corrie ten Boom puts it. Instead, I am afraid of pain and suffering.
   I think one of the most awful things one can do is to let fear control your life. Yeah, it's okay to be scared, but when you let that feeling control your life, you've got a problem on your hands. Now I'm not saying you should go jumping off buildings or not be cautious, but most things we're scared of are actually pretty safe. Things like traveling on a risky space mission, however, are not. But would it not be magnificent to die gazing at the stars that are so close and earth that is so far? If we don't take risks in life, what are we living for?
   Looking back on it, I wouldn't go, not at this time in my life. I'd go only if I felt like I'd accomplished everything on Earth. I feel called to help others. I would go, just not yet.
   The only way to grow is to take risks. This motto has gotten me through a recent situation and continues to inspire me.
   Anyway, I was so intrigued by this dream that I asked all of my family and even emailed my science teacher. I've gotten "Yes, I would definitely go," and "No way!" So what would you do? Comment with your answer, please!

Love,
Rachel 

Thursday, June 23, 2011

Just Since July

   I am doing summer camp now.
   Soon after I got to camp, I made friends. One girl quickly became close with me, and we enjoyed talking to each other even though we were just going over the basics. It is nice to make new friends even though I adore my "old" ones. I haven't had that feeling in a while.
   I very much enjoyed being around her, though she was part of one of the camps that would be leaving for three days to canoe and camp out. I was somewhat disappointed because I wouldn't see her until Friday, but I am excited for her. She is not new to the camp and was able to give me a lot of information.
   We pretty much hung out with each other all day. Then free-time came. "What are you going to do, Rachel?"
   "Um, I'll probably just read," I replied contently. I just finished a very good book (A Bend in the Road, by Nicholas Sparks).
   "Oh. Well do you want to play soccer with us?" She asked. I hadn't told anyone except the camp staff about my arthritis.
   "No thanks," I replied. Later, she came back and sat at the picnic table beside me.
   "Hey, do you want to go play tether ball?" She asked eagerly. I shook my head, using the same response I had for soccer. "Oh." She had a confused, disappointed, and slightly offended look on her face. I could tell she didn't know what to think. She probably thought I was completely avoiding her. She has no idea about the blood draw marks on my arm I struggle to hide (that's why I wore that Aeropostale jacket all year, for those of you who didn't know), the pain in my hips, my frequent visits to the children's hospital, or how much I'd love to play soccer and tether ball. I decided, though, that it was time to tell her.
   "I'm sorry I can't play with you." (Yeah, I know, I sound like I'm five) "I have this disease called juvenile rheumatoid arthritis. Sort of like arthritis in old people, except my joints have aged early. So basically, it hurts to move. Oh my gosh, that sounds awful." I laughed and she did too. A look of understanding crossed her face, even though she obviously wasn't very educated on the disease. Then again, she didn't need to be.
   "I'm sorry. For you, I mean. That must suck." She said it in a matter-of-fact way that made me smile.
   "Well, I guess you could say that. But it's okay. I'm used to it." After that, we carried on as normal.
   These are the kind of moments where I look around, from the poppy green of the summer trees to the kids burying their feet in the sand of the volleyball court, and smile. I realize just how marvelous the world is.
   I was attempting to do a high ropes challenge course earlier this week (yeah, a little ambitious for me, but I have to push myself). I got all clipped up to wires and ropes and climbed up staples in a tree. Finally, I was at the top, but my hip felt so very crushed. I realized that I wasn't going to make it. "I need to come down!" I shouted to my camp counselor.
   "Why?" he shouted back in reply.
   "My hip hurts!" I replied. This particular counselor did not know about my arthritis.
   "Can you climb back down, or would that make it hurt more?" he asked kindly. I replied that it would hurt more and so he had me let go of the tree and swing so very high up as he lowered me down forty feet or so. I was in tears, and horribly embarrassed. "Is your hip okay? What happened?" he asked, concerned.
   "I'm okay. I have arthritis in my hip." I wiped away tears. He unhooked me.
   "How long have you had arthritis?" he asked tenderly, "All your life?"
   "No," I responded through tears, "Just since July,"
   After that I walked over to the bench and took a break, frustrated with myself. I was able to zipline later that day however. I am having lots of fun at camp despite my troubles. I even got a, "Don't only old people get arthritis?" when it came up with another girl that I am affected by arthritic troubles.
   I wish I could have done the high ropes course. I wish people would understand. Maybe I just need to lower my expectations.

Love,
Rachel
   

Tuesday, June 14, 2011

You Hit Rachel

   It's summer! Am I excited? No. Am I completely bummed because I love all of my friends so much and I won't get to see them as much now that school is over? Yes.
   My arthritis is getting really annoying. Like seriously though. Could it ever just decide, Oh, look, Rachel's having fun at a pool party, could we just have a little mercy on her knees today? Well, the answer is apparently No. I have to say, I'm a little disappointed. 
   I am eager to watch my first summer with bad arthritic pain unfold. Maybe eager is the wrong word. I am not the excited type of eager but more the curious type of eager. In about a month I will have had JRA for a year. That seems like such a long time! It doesn't feel that long. Then again, nothing ever feels that long. I am so sad that school is over. I would do anything to do this year over, even with all my arthritic struggles.
   I'm seriously wondering whether I should throw a birthday party for my arthritis. It's like a really annoying, sometimes mean friend to me. It has taught me so much though. It's taught me how to live, how to think, how to act, and how to accept things without adjusting to them. I'm sort of thankful for it, though I would tell you otherwise if I were in one of my worst days right now. So I probably won't. 
   I have been pondering lately if I am more of a burden to my friends than I am worth. I think this is probably true, but I don't think anyone will admit it. All of my friends are way too kind.
   There used to be this phenomenon going on at school where whenever something would hit me or anything everyone would go, "You hit Rachel!" This used to happen all the time. Basketballs, soccer balls, erasers, markers, food, whatever. People must think I'm fragile. Which is sort of true. When I'm in bad arthritic pain, people try to hug me, which in turn hurts my back even more.
   I always respond with, "I'm fine, really." because I always am fine and nobody ever believes that I'm fine. It honestly never hurts, and if it does only for a second.
   "I'm sooooooo sorry!"
   "It's okay, it didn't hurt, really."
   "Are you sure?"
   "I'm sure,"
   "Positive?"
   "Positive,"
   "Oh, I'm so sorry!"
   "It's fine, really. It didn't hurt. I don't care."
   I do have to say that it's sweet how much everyone looks after me. Even the most misbehaved kids worry about me when I get hit with things. It's funny and sweet and I swear you can almost see the threads that knit me and all of my peers together.
   There I go, talking about school again. It's probably pretty obvious that I miss it. I would give anything to do this year over again. If I knew then what I know now about my arthritis, I would've been more demanding.
   I am getting way overly stubborn. I was at the pool with one of my friends. Being the caring person that she is, she kindly ordered me not to jump into the pool as she knew it would hurt my joints. "Rachel, do not jump in. It's going to hurt. I don't want you to get hurt." She said. I thought it would probably hurt, too. Still, I was not satisfied with the feeling of being controlled so as soon as she wasn't looking I jumped into the pool. Let me tell you, it hurt.

Love,
Rachel 
   

Friday, June 10, 2011

Coming to a Close

   Arthritis commercials make me mad. They act like it's only that people with arthritis have trouble climbing stairs and it hurts a little bit. From connecting with other people with arthritis and personal experience, I know that the pain is much worse. It's excruciating. The kind of pain where you think, What if it never goes away? Would life be worth living? Yeah, it can be that bad. Of course, there are many degrees of arthritis severity and pain. I try not to look as they show what seems like a mild, nagging pain on the television. I have a feeling that the commercial creators do not suffer from arthritis.
   Anyway, my arthritis has been okay, I guess. My hips have been really bothering me. They sometimes hurt more than my knees, which is saying a lot, considering my knees pretty much murder me. I mean, actually I murder my knees, at least my immune system does. Thanks a lot, immune system!
   I am on a muscle relaxer, because I have muscle tension and a pain syndrome on top of my arthritis. It's weird to think that in a month I will have had arthritis for a year. I had to see an opthamologist today, because kids with arthritis can get eye inflammation called uveitis. (See More About JRA for more information.) My eyeballs are good!
   I learned what people have been keeping from me today. Here's what happened:
   All of a sudden, some of my friends come bursting out of the closet, tossing balloons. This closet that is usually only used when Dana, London and I are hiding presents for teachers, is holding about fifteen people. It was insane. I was very confused at first (I swear they're lucky I'm not dead from a heart attack), but then they all came towards me hugging me and wishing me a happy birthday. I laughed and hugged all of them multiple times. It was a surprise party for me! How incredibly sweet! I received a mountain of cards and gifts. Thank you all so much! It was lovely and beautiful and all those types of things!
  So as for my arthritis, I'm okay, though I am in the midst of a tsunami of pain.
  School ended today. Let me tell you, I cried. I hugged everyone, even people I barely know. Give me some time, and I'll tell you why it was so upsetting for me.  
Love,
Rachel



Monday, May 30, 2011

Perfection to Remember

   Our school went to an amusement park which I will not name for location privacy purposes. We rode there on an activity bus. I sat beside my friend Dana. I brought poems, wrote poems, wrote a letter, listened to music on my iPod, read a Nicholas Sparks book, and talked/laughed with Dana on the way there. Suddenly, a wave of excitement crashed upon the bus, as one of the boys claimed to see one of the big rides. Everyone was so excited! It was lovely to see everyone so happy, and though my excitement was not as great as theirs, (I'm the calmer type) I marveled at seeing them all so ecstatic. (My friends commented that I don't really have many facial expressions.)
   We got our lunch passes and tickets then got into our groups. My mother, physical therapists, and I had agreed that it would be best for me to rent a wheelchair there. I did not want to hold my friends back and be the weak link; it would not have been fair to my friends. Luckily, our chaperon, my friend's dad, was very understanding and assisted me in the process of renting and returning the wheelchair as well as pushing it. My friends also helped push me around. To all of my friends (even London, who scared me to death as she pushed that thing around): thank you so much!
   Anyway, we all had a ton of fun. We were in line for one of the rides; our group had split up. All of the sudden, a teacher came up to us and asked, "Are you all from (the school we go to)?" nodded. "The buses are leaving. We have to go, now." He said it with an urgency that made us run (well, I rolled) to our chaperon and race to get the other half of our group. Finally, after they came back, it began pouring rain. Our chaperon checked the wheelchair back in for me and all of my friends ran back to the bus, ankle-deep in murky water. I walked slowly and painfully, watching the rain pound so hard on the ground that it caused ripples of waves on the pavement. I smiled, thinking back to my blog post 'Rain's Advocate'. Water squished in my tennis shoes, and my hair got seriously curly and messed up. My pink shirt and denim shorts were literally soaked, and water droplets were clinging on to my eyelashes. I would've looked the same if I'd jumped into a pool. Finally, our chaperon caught up with me and walked with me (how sweet!) to the bus. We were the last ones on and the wettest. I climbed up the steep stairs and all eyes became hooked on us as we stepped into view.
   My language arts teacher and science teacher, both of whom attended the field trip, looked at me. "Are you okay?" My language arts teacher asked me kindly.
   "Oh, yeah, I'm okay," I laughed, running my fingers through my hair in an attempt to keep it untangled and straight (which proved unsuccessful). Everyone on the bus was grumpy and wet and exhausted. "Stop," I told them. "This will make the trip memorable. We're going to look back at it and say 'remember when we went to the amusement park and it rained like crazy and then we went, soaking wet, to (insert restaurant name here)?" Gradually, the whole bus lightened up and laughed it off.
   So thank you to everyone on that bus. Thank you London for your view of Lindsay Lohan on The Parent Trap, Mr. Bus Driver for driving our bus, Dana for helping me with my list, my teachers and our chaperon for ensuring the safety of all of us, Alexus for dancing in the rain, Joey and Amber for being awesome, Deja for pretending to suffer from amnesia, and tons of others. I love you guys and I always will!
   It was on this trip, in the moment that I felt that my life was impeccable. Pain and problems can't stop me.
   Thank you for the best day ever.

Love,
Rachel

Monday, May 23, 2011

Millions of Moments

   Today, I thought about why I even started this blog in the first place. I finally came to a conclusion that writing saves me when I feel as if I'm going to break. Of course, a majority of my days, though pain-filled, are beautiful and marvelous. I don't always feel as if I'm going to break. (Which is way different than feeling like I'm going to fall down from arthritis.) Even so, when I do, writing my blog helps me recall memories from my past. Memories of better moments. Soon, I am so enclosed in my moment that I am nowhere to be found. My face advertises a blank expression. The happiest words I've ever heard echo around me, and I am able to relive them in my head. As soon as the picture fogs up and then disappears, I am able to apply the happy thoughts in even the worst of situations.
   I don't think people realize how much I've learned from this. Everyone learns something important and unique at some point in their life. Since that point is now for me, I hope that I am like an ingredient in a recipe. Adding something to your recipe for life. Then, after you combine it with all your ingredients, it might taste just a tiny bit sweeter.
   Isn't a tiny bit all we need at times?
   I have been feeling okay lately, and brilliant for part of today. I'm not saying that there was no pain; it was just to a lesser degree.
   The other day I was watching a commercial with London and Addie (two of my friends) about butterflies you grow in your home. It then occurred to me how much I love butterflies. Probably for the most shallow of reasons. But that's okay. I can be deep with other things.
   I am now a huge fan of Adele, especially 'Someone Like You' and 'Turning Tables'. I need an Adele piano book. I absolutely LOVE piano, and I have spent too long clunking around trying to pick out notes. I'm going to get lazy and find a book.
   People are hiding something from me. I will not elaborate on this.
   To Addie and London: Remember Drizzle?

Love,
Rachel

Friday, May 13, 2011

Rain's Advocate

   'Pocketful of Sunshine' and 'Walking on Sunshine' both emphasize the link between  positive things and the sun. If you say you had a rainy day, it is automatically an indicator that you mean you had a bad day. But why? Of course, people don't like to be wet when they are walking to work in the morning, going outside, etc. Still, the rain is not going to just stop, and if it did we'd all be wishing we hadn't complained about our curly hair and wet clothes. I mean, I understand why the rain can be annoying. But the sun beating down on us can be just as bad. 
   Since the rain is not going to stop, why not enjoy it? It is so much fun to spin around and dance in the pouring rain; it makes you feel like a part of the earth rather than an addition. (By the way, if you have arthritis, rain flares it up, so I can understand the hesitance there.) Even so, from now on, I am rain's advocate.
  So I think I have arthritis in my hips. Today was a bad day. No, today was an awful day. No, today was one of my worst days ever. I have had so many teachers help me this week. I'll abbreviate to keep this short.
Thank you to...

My Language Arts Teacher
My School Guidance Counselor
My Spanish Teacher
My Science Teacher
Dana 
   
   I saw Stacie! It made my day absolutely perfect. 

Love,
Rachel 







   

Friday, May 6, 2011

My Twilight Sleep

   Everything is so much greener now. Looking out the window of my kitchen, bright green trees overlap each other, soaking in the sunlight. I thought about this today as we read a poem about summer and a poem about December in language arts. It compared fallen leaves to cornflakes and snow as sugar. I'll never eat my cereal the same way.
   I had my injections done. I was excited as we pulled up to the hospital but nervous and slightly anxious. An IV was placed into my hand (ouch!) and they covered my legs with some orangish-brownish stuff before they sedated me. It was conscious sedation, and let me tell you, I felt those needles. I have two red dots on my ankles and three on one knee and two on the other. I don't really like to think about the fact that they went deep into my joint and I watched it happen. So I guess it was somewhat traumatic. Still, I was bubbling over with hope. One of the nurses (or maybe one of the anesthesiologists?) taught me how to make my breathing line change by taking different types of breaths, so I had fun with that and monitoring my heart and blood oxygen levels. 
   I was very slow to wake up from my 'twilight sleep'. My friend Amelia would tell you that I was probably in a daze. That has been happening a lot lately. I'm just kind of out of it, just daydreaming. Amelia gets the biggest kick out of it; I always snap back to her laughing and smiling, which, in turn, makes my day better. Luv ya, Amelia!
   When I woke up, I was crying. My parents later informed me that the first words I said were, "I felt it,". I can believe that. 
   So far, the injections haven't really done anything, at least not with the pain. But results vary, and my pediatric rheumatologist said that it may take a few weeks. So I'll be patient. 
   My arthritis has been awful since the injections. At least, the pain has been awful. Maybe it's because I switched off the medication that made my stomach hurt? The soreness from the injections has passed, but they still hurt a lot. It is very frustrating, as I was hoping for quicker results. I will remain patient though. I admit to being scared. Scared about what will happen if the injections do not work for my pain. At this point though, the weekly Methotrexate shot/ oral steroids will be nothing compared to arthritis pain. I still have my biggest flare-ups during science. After all the walking around of the day, I start to really feel the effects. They always hurt, but it is most definitely worst in science. Late science-mid first elective, really. As much as I try to hold back tears, they escape like little prisoners breaking free. I think they are sometimes the only outward sign of my pain. I think people have found it hard to believe that even when I'm laughing, smiling, and having a great time I feel like collapsing. Always. Anyway, I do not want to cry mostly because I want to walk down the hallway without teachers and other students stopping me to try to intervene. Of course, everyone has beautiful intentions. Also, my tears are abnormally cold (well, at least I think they're colder than normal tears) and I do not like anything that involves cold and wet except rainy winter days. I do love rain, I love it even more than sunshine, but it makes my arthritis worse. I guess I'll have to wear a space suit next time I feel like splashing in puddles and making my hair curly.
   My would-be math teacher (it's complicated) and social studies teacher stopped me in the hallway the other day, witnessing my tears and hoping to help. They offered to let me stay in their classrooms, take my stuff, etc., but I refused. Now I know I'm stubborn, but this wasn't really a stubborn issue (at first). This was me wanting to be able to walk down the hallway, carrying my own stuff, feeling "normal". My would-be math teacher tried to take my lunch box for me, but I entwined in with my arm and kept the firmest grip possible with arthritic fingers on it. (I guess that's where my stubborn qualities came in.) Finally, she settled on just walking me to class. 
   I haven't seen Stacie in over a month, and - no joke - I am going absolutely crazy. I need her. We're like sisters. I also miss the other patient, Philina. The three of us laugh for what seems like eternity but ends in a moment. Six days until I see her again! May 12th will probably be one of the best days of my life!
   I have the urge to run. I sincerely hope to get there soon.
   I have always thought that the best type of literature is the type that doesn't end. The type that you can apply to your life, create your own ending to, and use as soil as you sprout. Literature that leaves thoughts unspoken, ideas hushed, voices quieted, yet understandable if one thinks hard enough. So I hope that my blog does exactly that. Leaves open lessons, thoughts, and ideas without a clear blueprint. 

Love,
Rachel 

Friday, April 22, 2011

It's Your Life

  "Uh, I have to take this medicine." Is a phrase many people with chronic, or even temporary, illnesses sometimes say. I admit to being one of these people. "Uh, I have to take this annoying medication that hurts my stomach." I'd say.
  It is very easy to slip into these thoughts. But we have options. If you don't like your medicine, talk to your doctors. Chances are, there is an alternative that you can try. For all those kids out there: you don't have to be an adult to tell your doctor that you don't like your medicine. Does it have annoying side effects? Is it not helping very much? Well, it's your life. You have the right to say so.
   Through this, I am not saying that there will be alternatives or that the alternatives will work better. For some people, of course, there will not be. Also, if your doctor has you on a plan, don't try to screw it up. But you might be surprised at how many similar and yet different medications are available.
   The other important thing to remember is that we are blessed to have medications that will help us and even keep us alive in some cases. We ought not act as if we are annoyed by them, unless they really are not benefiting us in any way. So from now on, it's "I can," with me, not, "I have to.".
   I have injections for my knees and ankles scheduled! I am very excited, as I know they will make me feel much better. I had an appointment with my pediatric rheumatologist earlier today and it went beautifully. Oh and I'm still looking for ways to make needles less painful, so if anybody has any ideas, COMMENT! I have already discovered the helpfulness of a quick nurse who barely says a thing before you're being swabbed and stuck. It also helps me to pray quickly while it's going in and to think about something else. I know thinking about something else doesn't work for most people. I have a lot to think about, though. I never give my mind a break. Believe me, I look straight at the needle. Otherwise I'd freak out and when it pierces my skin I'd jump. If you look at it, it seems like less of a big deal, too. Of course, everyone probably has a different opinion on this. 
   I watched the movie Alice in Wonderland (the newer version) last night. I've been thinking (surprise, surprise) and I've noticed that I am a lot like Alice. I am stubborn, curious, and awful at making decisions. I think we all have a little Alice in us. But let me tell you, I most definitely got my dose!
Sorry this post is so late, I haven't had much time to write or much stuff to write about!
Love,
Rachel 

Friday, April 1, 2011

The Art of Naming Crayola Crayons

   I have always been intrigued by the number of crayons Crayola produces and how many different colors they come up with. Any color you can name can be found in a pack of Crayola crayons. I like Crayola the best out of all the different brands. I probably sound like I'm about five years old right now.
  What intrigues me even more than the variety of colors is the variety of names Crayola crayons possess. Some of my favorites:
Beaver
Fuzzy Wuzzy
Electric Lime
Unmellow Yellow
Baby's Blanket
   I admit it; I'm jealous. I am jealous of the people who get to sit down and decide the names of all these crayons. They honestly have one of the best jobs in the world. So that's one of my crazy little goals. To figure out how to name some Crayola crayons. I think it's good to have little crazy goals. The other day, my goal was to run out of shampoo and conditioner at the same time. Accomplished!
   So I emailed Crayola.
   Apparently they get their names from a book called "Color: Universal Language and Dictionary of Names" which was published by the U.S. Bureau of Standards. That's pretty awesome, if you ask me.
   Lately, my knees and ankles have been awful. I don't know what's up with them!
   So all and all it has been a good week, even though my arthritis has been very bad.

Love,
Rachel
  
  
  

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