Rachel...what I look like when I'm happy...which is more often than not

 
Welcome to my page. I'm fifteen years old (at least that's how old I was in 2001, when I wrote this story), and sometimes I feel that without me, my doctors wouldn't have a paycheck. You see, I have a whole slew of medical problems.  Several of them are the type you've probably heard of before (asthma, depression, and tendonitis), and others are so unusual you'd probably miss them in a spelling bee (tissue granulomas, Raynaud's, spondolo-epiphyseal dysplasia, osteosarcoma, bi-polar disease, and gastroenteritis with protein-losing enteropathy). It's the weird ones that I want to tell you about. But first, I'd like you to learn a bit about me, Rachel.

Here's what makes me tick. I'm smart and pretty mature and I love to help people. I have always been an honor student.  Even when I spent a month out of school and five months in a wheelchair with casts up to my thighs, I was able to keep up with my work and maintain an "A" average.  I'm really proud of that. Reminds me that I am a fighter. I've never given up and never plan on doing so. 

I love to read, act, play music and write.  My editorials have been in newspapers and even in Time magazine (a letter to the editor on  5/24/99 about Columbine).  I'm on the Speech and Debate team in my school, and this year I was valedictorian of the eighth-grade class.  I love to play the flute (and to receive awards for my playing). I love to swim, too, and I used to be on our local swim team. I graduated from high school three years early, and I have since then become very busy! 

I recently became a Rotary ambassador, and got to speak at their district conference, encouraging adults to promote disability awareness. The Rotary helped me establish a penpal program for ill kids, too.  Here's how I spend my time. I work for Rotary and a local music company, spend time as a political intern, take college classes four days a week, and play flute, piccolo, clarinet, and saxophone in two local orchestras. I do a lot of genetic research, as my biggest goal is to discover how my illnesses are linked. I take Portuguese and Italian so I can communicate better with the kids I meet in my ambassador position. I hope that someday I'll be working for the federal government.

I think that it's cool to help others. I worked on a project to collect donations of stuffed animals for a local fire department so that the officers could bring the toys on emergency calls that involved children. I also co-chaired a holiday toy drive at my school. I really enjoyed those activities.

Like everyone, I have a bad side.  I am stubborn and I cry a lot. I cry because I donít have many friends and because I am constantly teased. I like school, but the teasing gets to be too much.  A few of my classmates stand up for me (one recently became my boyfriend), but most of the other kids just hang around when they want my homework. 

I wrote a poem and recited it in front of my peers about what itís like to be disabled. It was a difficult thing to do.  At the end of the speech, my classmates all started applauding.  I had changed their views!  To them, I was no longer just a girl on crutches or in a wheelchair who was often absent (11 operations so far and another just around the corner). They learned that I, too, have a personality.

I guess I'd better tell you the medical part of my story. It all began when I was in kindergarten.  My mom picked me up from school one day and she was quite frightened.  My skin was a pale, pasty white and my eyes looked like almonds.  Since I am not Asian, she knew that this was not a good sign.  She rushed me to the doctorís office, and what I remember from that point on was one horrible test after another. Nobody seemed to know what was going on since I had so many things wrong with me. 

Finally my doctor sent me to an immunology specialist.  This doctor and a gastroenterologist found that my immune system had turned against me and was actually attacking my intestines. My white blood cells were acting as if my own body were an invader, like a bacteria or virus or some other foreign substance. They caused my intestines to blister, and I was losing the protein from my body through the blisters. I was put on special liquid vitamin supplements and a strict diet. All I was allowed to eat at the time was turkey and apples. The blistering finally stopped, and the doctors hoped that the vitamins and diet would prevent my intestines from having another nasty allergic reaction to itself. Strange!

After several years, I went into remission with the help of a special medication that I take twice a day.  I no longer have those symptoms most of the time.  Not bad at all, except that even the common cold keeps me out of school for a few days.

The epiphysial dysplasia is the worst medical problem I have.  It, too, started when I was five years old.  One day, I just couldnít stand up on my own. My legs HURT LIKE HELL!!! After a lot of tests, the doctors learned that I have a square hip joint that was trying to fit into a round socket. In order to relieve the pain, I needed to use crutches and have a special brace made.  I remember being so embarrassed because it had to go directly on my skin and my dad had to help me wrestle it on until I was strong enough to do it myself. I wore the brace for two years and continued to use crutches whenever the pain was bad. 

The good news is that for a couple of years I was pain-free. The bad news is that when I was eleven, I began to have unbearable pain again, this time in my feet.  I was sent to another medical specialist who attributed it to flat feet.  Special shoe inserts to create an arch in my feet just didn't work to ease the pain. And so on to another doctor, where I was told that my ankles were turned the wrong direction. It's always something!

I learned that the only option I had was surgery. It was not an option that I could accept at first, and I started to cry. So did my mom, and we had a real bawl-fest for a few minutes. After talking it over with my dad, we decided to go ahead with the operation (a bilateral tibial osteotomy) real soon. This procedure involves cutting a triangular chunk of bone out of the ankle and replacing it with a screw to encourage correct bone growth.  Fun, huh? 

One of the highlights of my life was when I was selected to be a student ambassador to Australia. I met three incredible teenagers, Cami, Taylor, and Sarah, who accepted me for who I am. They just ignored the way I walked and the fact that I have two leg braces. They are my best friends, the kind of people I can trust with my deepest secrets. They cheer me up when I'm down and are always there to have a great time with. They even made me laugh when I sprained my ankle so I wouldnít have to focus on the pain so much. They are truly wonderful people. 

To kids with disabilities and to kids without--never give up.  Always follow your dreams.  People may tease you for parts of yourself that they don't understand. What I've learned is that along with the tough times in your life comes a great deal of good. That has certainly been the case for me. 

Love to you all, Rachel (my new nickname is Sergeant Trooper!)

More about osteosarcoma
More about bi-polar disease
And an essay I wrote that won an award:
Growing up in today's world


 
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Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468

Created: November 16, 2004