We got a diagnosis after my mom went to library and read every book
she could on health
conditions that had my symptoms for months . She came
up with 2 illnesses
that matched, FMS and CFIDS. Eventually we got
insurance and met
my wonderful doctor, Lori Utech. She didn't think I was
crazy, and after many
tests Dr. Utech agreed with my mom that I had FMS
and CFIDS. Then things
got worse, I became homebound.
A virus left me to sick to go to school. I had a slight recovery and was
able to go back
to school for 3 weeks and then went down again. We then
decided to find a
way to keep me up with my school work. We were able
found a Homebound
teaching program. I have a tutor who comes every week
brings my work and
keeps me up to date. Not going to school made me more
depressed and I was
then put on Prozac. After home schooling for the rest of
my 7th grade year
I had a break through. During the summer I went to a
chiropractor who gave
me Malic acid and magnesium pills, along with a fruit
and vegetable supplement.
And I thought I was recovering. I was outside
playing basketball
and running around, actually being a kid. I then began my
8th grade year actually
in the school building and did well until the first
school virus came
around and knocked me down.
Since then I have been homebound, and doing my best maintain some
what of a life. My
tutor, Pam signed us up with The Dream Factory. An
organization who grant
"wishes" to sick children. They arranged for me to get
a computer and all
the software needed. I am very grateful to Pam and the
Dream Factory. I then
got the internet. On there I met friends and other FMS,
CFIDS, and depression
sufferers. In April I began my own support group on-
line. I met lots of
people and learned so many things. Then I began my own
mailing list for FMS
and CFS. I find lots of new information on coping
strategies, studies,
and medicines. People need to know what FMS and CFS
is, even if they don't
have it. My theory is if you touch enough peoples lives
you might learn something
yourself and you might change someone's life.
A average week for me is working on-line on my web site and my
mailing list. I attend
FMS and CFS support groups on-line everyday they are
provided. I have my
tutor come every Monday, Wedsnday, and Friday. I
work on my school
work and try to not push my limits. And thats the extent
of my week. I don't
get to play outside or hang around with my friends. I don't
get to travel, I never
have even been on a vacation. My life is on the computer
and sleeping. I don't
have all the "listed" sypmtoms of FMS and CFS. I live
each day with extreme
fatigue and pain. I am in the process of changing that
by trying new therapies.
Something I'm learning is you can't cope you and you can't live with
illness unless you
try to learn and touch everything. If I would have never
pushed myself to make
these mailing lists and join those support groups I
would probably be
much sicker. You can never know too much, you can
never try too much,
and you can never teach enough. I don't want people to
have to go through
anything like I did, being told "its all in your mind."
Everything I do on-line
effects my life and many others. It may be a small life,
but it means the world
to me. Luckily my parents support me in my efforts to
help others. They
always tell me its a good idea and they know how hard it is
to have FMS and CFIDS.
It is very painful for my parents to see me like this
and they try to help
me stay healthy. It doesn't really matter to me that I don't
have many friends
with faces, but it does matter to me that I tried my best to
help them to live
with FMS and CFIDS. In most peoples opinions I Don't
have a life, but in
mine I have a pretty good one, and hopes of it getting
better.
The best advice I can give is, never stop trying, don't ever pass up a
learning opportunity,
and always try to help. If you keep learning you give
yourself the chance
to be healthy, and to have a life. The only way to cope is
to keep hope. You
can't be a kid with FMS and CFIDS, so you have to take
other directions.
You have to find ways for outlets, like writing, talking,
learning, dreaming,
and music. These have helped me tremendously, if I didn't
have dreams or hopes
I wouldn't be able to get out of bed. And it all starts
when you finally realize
you can live with FMS and CFIDS, I'm Proof.
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