Hi!
My name is Quinn. I am 12 years old and I have a twin sister, Brandy, and
a 13 year old brother named Byron. Some of the time we have fun together
and some of the time we don't. When we get mad at each other, we can usually
solve whatever the problem is. For example, sometimes we decide to share
stuff so that everyone can have a turn...like when we are playing the Nintendo
we get the same amount of time when we share. Then we are all happy.
Do
I have a story to tell you! I guess I'll begin with
the good parts!
I
like funny jokes and watching funny plays and movies. And goosebumps and
worsdsearch puzzles. I also like to take care of our pets…four cats and
lots of ants who live in their own farm. I love my Ant farm and I take
very good care of it. I have been known to make many potions using
all my mom's stuff in the house, 'til she hid it from me...hehehe.
Going
to Cub Scouts and earning awards is the absolute best. The other scouts
are nice to me because they want to be nice. After scouts is over a lot
of times we play tag outside or something. Now that's fun!
I'm
also really smart, according to IQ tests, and I love anything that hasto
do with science. My family's great, and I know they're here to love and
help me. Here's why I need their help. I have two diseases: one called
ataxia and one called bi-polar mood swings. Believe me, they are NOT fun!
First
of all let me tell you about my ataxia. I have to see a doctor called a
Neurologist to take care of it. Ataxia is a progressive loss of Muscular
Control. Luckily, I have a slow progression ataxia. Most kids with ataxia
end up in wheelchairs, and you can bet that I'm hoping that will not happen
to me. The ataxia makes me have tremors in my hands and fingers, so I take
a special medicine to help stop the shaking in my hands. It is really hard
for me to write, so I got to have a computer at school to type. Even though
I type really slowly, it's better than my handwriting... just too hard
when you have this ataxia problem. Try shaking your hand a little bit while
you write. Weird, isn't it?
It's
also tough for me to speak distinctly. You have to listen really carefully
because I have a slur in my speech. It's hard for people to understand
me, but it's really difficult for me to talk clearly. Believe me, that
is frustrating…for everyone!
There's
more, too! I tend to trip all the time and I fall a lot since my coordination
is very bad. I do not like having ataxia…at all! Think about what it would
be like for you. It is very annoying to me.
Now
on to my Bi-polar Mood Swings. I take some more medicines for this problem...in
fact, I take a whole handful of pills with breakfast and dinner every day.
They get stuck in my throat sometimes and I do not like this, but they
do help me a lot. Without my pills I feel like I am out of control and
nobody wants to be around me. This disease makes me feel like I can’t think.
It's so very depressing! The thing about these mood swings is that sometimes
I'm OK and other times I throw things, bang my head off the walls, and
yell at everybody. I can't help it. Everybody yells back at me and things
get even worse. On those days I have to stay in my room until I get in
control again.
Sometimes
I even see things that aren't really there. Once I thought there
were spiders all over in the tub, even though there weren't. I was
VERY scared. Sometimes I think bugs are crawling all over me and I hit
myself all over to get them off. My Mom tells me that they're notreally
there, but they sure are real to me. This seeing things in my mind
is called hallucinating. I hate the hallucinations because they're scary
and because they make me look like I'm stupid. I really feel bad about
myself, because I do not have very much patience and I get very mad easily.
Sometimes I get something called a panic attack, too. It feels like I can’t
breathe and I get really scared. I go to a psychiatrist for help with these
problems, and I've learned that I just have
to take it a day at a time.
I don’t
like to go out for recess because I don’t seem to get along withother kids.
They just don’t understand me, so I normally stay in and do extra assignments
for extra credit.
I
don’t have any friends at school and this makes me very sad. I wish the
other kids would understand give me a chance, but they don’t. They call
me 4 eyes sometimes and when I tell them 4 eyes are better than 2 they
get mad and say no they're not. When
they call me names I tell them that sticks
and stones will break my bones but names can never hurt me. I just
try to tune them out and ignore them and they hate that. At least I love
to go to scouts, so that's good, right?
What do you think? Here's a newer picture of
me...Thanks for visiting!
P.S. I hope that you'll write
to me
Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Last updated: November 14, 2004
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