for visiting. My name is Jackie and I'm 17 years old (when I wrote this in 2001). I have three brothers
and three dogs. And I have six of the best friends ever...they are incredible!
I also have a pretty nasty disease, but more about that later. My friends
and I all like the same things, and I have fun going to the mall or the
movies or the beach with them. I used to join them in skiing, rollerblading
and diving, too, but my medical problems make that impossible now. Fortunately,
I absolutely love theatre, and despite my illness, I can still enjoy shows.
Recently I've seen Annie, Les Mis, the Nutcracker, Joseph and the Amazing
Technicolor Dreamcoat, and a Chorus Line. Every once in awhile, my parents
take my younger brothers and I to the ballet. When I'm watching actors
or dancers, I forget about what I'm no longer able to do, and appreciate
just being able to attend the performances.
suffered from something called gastro-esophageal reflux disease (GERD)
for what seems like forever, even though I didn't start treatment until
I was in the fourth grade. I have a type of GERD that's both severe AND
chronic, which means that I've had lots of tests, doctors, and hospitals,
and that I've had this problem for a very long time. In fact, this week
I have to go to the hospital to have a periscope put down my throat so
that the doctors can see how my esophagus is doing. The "periscope" is
really called an endoscope, and the procedure an endoscopy. I might even
find it interesting, if it were someone else who was going to have it!
a stomach with a special muscle on the top that contracts to keep your
food down there once you've eaten. With GERD, the muscle on my stomach
doesn't tighten up as it should, resulting in stomach acid, and food, coming
back up my throat. Even though I take some pretty strong medications, I
usually vomit at least once a day, all because of that pesky little muscle.
Because acid is pretty strong stuff when it leaves your stomach (where
it's supposed to live),it has done a number on my throat, even causing
bleeding. Once I had to be fed through a tube into my stomach. Incredibly
weird, but I guess you can get used to most everything.
I went for three weeks without holding anything down. Not only had
I lost a lot of weight--I lost strength too. I was admitted into a hospital,
and my regular doctors weren't available. Some doctor who didn't know me
decided that it was absolutely impossible for me to have GERD...because
was 16. Seems like GERD is primarily a condition of infants that is
outgrown by the time the children are school-aged. Because my symptoms
didn't "fit the textbook", I was diagnosed with an eating disorder, instead,
despite my mother's attempts to tell everyone that I have chronic GERD.
of real concerns over the amount of weight I'd lost, and because "they
knew best", I was sent to a psychiatric hospital to "get treatment for
the eating disorder". After three weeks of therapy, during which time,
coincidentally, the GERD got under control, I was discharged. I went to
my regular GI doc and pediatrician and they both whole-heartedly undiagnosed
the "eating disorder"!
I can't say that this disease has been particularly pleasant, I remind
myself that there are other people out there worse off than I am, and I
tell myself that I ought to be happy that I'm alive. I try to remember
to laugh about something everyday, too, because I've noticed that when
I do, I have a different attitude about being sick.
thing about being me is having an illness that makes me tired and weak.
The odd thing is that at the same time, the best thing about being me is
my illness. You see, it is because of it that I've been able to appreciate
more, become a better friend, and become more dedicated to finding a cure
so that others don't have to suffer.
is often hard for me because of all the meds I have to take, because of
my weight fluctuations (I can lose 5 pounds in just 2 days when I'm having
a sick spell with a lot of vomiting), and because of all the class time
I miss. Though I usually don't get teased too much when I miss school,
it's tough, and even tougher when kids make comments like, "I haven't seen
you in so long, do I know you?"
my computer, and I must say that this is one thing I am really good at!
When I was in the hospital I was able to communicate to people via e-mail
and when I am home with GERD problems, I can zoom off in cyberspace and
talk to people around the world. Not only do I love working on computers,
I get paid for it too--doesn't get much better than that!
going to a college next year far from home, and a special team of
doctors has been set up for me who are skilled in the management of GERD.
I plan to major in chemistry and pre-med, and will hopefully (cross your
fingers) become a medical researcher. I don't want any kids to go through
what I deal with everyday. My doctors tell me that my problems will never
go away, and that I am at risk for developing even more difficulties from
them. I'll give you a for instance so that you'll have a sense of what
they're talking about. I've recently been diagnosed with pernicious anemia
(not enough strong red blood cells) because my stomach can no longer absorb
my doctor recently, and when I asked, "so when do you think this will be
all gone?", she looked at me and with the straightest face said, "I'm sorry
to tell you I don't think you've gone through the worst yet. That's going
to come in the next few months to a year." Whoa.. I was so upset!
I was like, "What are you saying!" I guess I've concluded that I'm
not a good patient. Can you believe the worst has yet to come??
Grr, what a thing to tell a kid! They may think that
this disease will continue to invade my body, but I plan, someday, to find
a cure. Wish me luck!
you enjoyed my story. I recently started a discussion group for kids with
medical problems. If you'd like to join, send an e-mail message (totally
blank) to this address,
and you'll soon be chatting with the rest of us! Jackie