Welcome,
thanks for taking the time to read my story. My name is Bridget, and
I'm
nineteen-years old.
As I
look up at the night sky I always pick out one star that I make mine
and
that is the star that I wish upon. My wishes are so varied...I
wish
that I could somehow keep in contact with my friends from high school,
I wish that I could remember what it was like to run, I wish that I
could
do all of the small things that you never appreciate until they are
gone,
but most of all, I wish that I could make a difference in the
world.
Right
now I am working on making that last wish come true by studying to be a
special education teacher and working with young children with
disabilities.
The best times I have are those I spend with 'my kids,' because they
accept
me just the way that I am. They are wonderful! I believe that
there
is nothing better in life than to make a child smile.
Medical
conditions have pretty much been a part of my life since I was born, so
the transition from 'healthy' to 'sick' was more of a gradual change
than
a major transition. As an infant, I was what is called a
'near-miss'
SIDS baby. SIDS stands for 'sudden infant death syndrome,' and as you
can
see, I survived (thank God), but not without many emergency
recussitations.
I would sometimes stop breathing when I slept, and nobody has ever
figured
out why. You can imagine how scary this was for my parents.
Fortunately,
I 'grew out' of that medical problem!
What
I did not grow out of were the constant difficulties that I had with my
bladder. After a zillion tests, I learned that I had something called a
neurogenic bladder, which means that it just does not respond the way
it's
supposed to when full of urine. And get this, at the age of
eleven,
I was also diagnosed with lupus, a strange condition in which the body
attacks itself as if it were a bad germ. My mother has the same problem.
Though
I grew up with these challenges, there were not many things I
couldn't
do. That is, until my senior year of high school, when I
developed
mononucleosis, and the virus that caused it, Epstein Barr, continued to
hang around for a long time. My body just broke down under the weight
of
it all, and I missed almost three months of school, completely
removed
from my friends, the activities I loved, and the excitement I should
have
felt during my last year of high school.
Returning
to school after a long time was very difficult because everyone else
had
all of these special memories of senior year that I didn't have, and
sometimes
it felt like they had forgotten about me. I was very lucky to
have
a great group of friends, though. They didn't treat me any differently
because I was sick, and they did their best to get me out of the house
whenever I felt able.
When
you take steroids for a long time, one of the things that happens is
that
you gain weight. I learned to ignore the stares and comments about my
appearance,
but they still hurt. I did learn during this time that once people
understand
why someone is different they often are able to accept those
differences
better.
During
this year of being sick, one of my wishes came true. While my
teachers
at school questioned whether or not I would be able to graduate, I had
been busy making plans for the next year. And guess what? I not
only
graduated from high school, I graduated fourth in my class and received
a full tuition scholarship to college.
Unfortunately,
my medical litany did not end in high school. Right before college, I
was
diagnosed with fibromyalgia (a muscle pain disorder), chronic fatigue,
Hashimoto's thyroiditis (an autoimmune disease where my body attacks my
thyroid gland), sinus node tachycardia (my heart races without any
reason
that I can figure out), and neuropathy (a loss of sensation in my hands
and feet).
All of
these problems made college life very difficult for me. I struggled to
get my class work done, which left little time for a social life.
I have not yet been on my first date, and sometimes I wonder if anyone
will ever want to date someone with so many problems. But then I
try to focus on today, right now, and the things I can
control.
I'm learning to be an advocate for myself and to speak up when I need
to
. . . not easy when you are painfully shy.
From
the sounds of it, my medical problems seem to play a big part in my
life,
but that is actually far from the truth. They are a part of who I
am, but I am so much more than a bunch of diagnoses. I still try
to do all of the things that I enjoy, like listening to music, writing,
working with children, and collecting frogs (even though I am actually
terrified of the real ones).
It is
not easy growing up with a chronic illness. But as a result of all my
experiences,
I have learned who my real friends are. I have become even closer to my
mom, my best friend of all. And I have come to the realization
that
though I wish there were cures for my problems, I know that regardless,
I am OK, and that when I wish upon a star, many of my wishes can still
come true.
Thanks
for visiting my page! Bridget
Update:
Hooray, I'll be graduating from college in May, and beginning student
teaching
in January. On the medical front, my heart condition has officially
been
diagnosed as POTS (postural orthostatic tachycardia syndrome) which is
related somehow to the Chronic fatigue syndrome. I've also
acquired
some new diagnoses involving an assortment of knee problems including
arthritis
and chondromalacia. Unfortunately, these require braces, PT and meds
and
may require surgery if the less invasive things don't work.
The new
labels for my problems don't really change anything, I am still me no
matter
what diagnosis they place on it and my life continues on no matter
what.
It is more a comfort knowing that there is a name/names for what is
going
on and that someone believes me...there is nothing worse than doctors
that
refuse to listen or say its all in my head. As far as I am concerned,
the
labels are just convenient ways for doctors to share information on
medical
conditions...I am not a lupus, a fibromyalgia, a POTS, an insulin
resitance,
an arthritis. I am a person with lupus, a person with fibromyalgia, a
person
with POTS, etc., and they are only a small part of who I am. I
wish
people could see past the symptoms, the differences, and see all of the
similarities between me and them. Perhaps I may never be able to
run or jump, to be a perfect size 8, or to fit the image of "normal"
but
I am myself and right now that seems to me to be a pretty good person
to
be. Bridget
Some
links you might find helpful:
The
Lupus Foundation of America
The
Fibromyalgia Support Center
Hashimoto's
thyroiditis
More
about POTS
Want
to read my pieces on 'making
it to the top' or 'sharing
secrets'?
mailto:bethany_summer@yahoo.com