When I was 4 1/2 years old my mom began to notice some bruising on my
left hand and swelling of my knees. We lived in Port Townsend Washington
at the time and my doctor told her it was just normal bruising that kids
get (I was a very active child). After a few more visits and a bit more
proding from my mother the doctor finally agreed that there might be a
larger problem and gave her the choice of taking me to another hospital in
Port Angeles or to the children's hospital in Seattle. She chose Seattle
because that was where the doctor suspected I would end up anyhow. At the
children's hospital the specialists diagnosed JRA and I began therapy and
treatments accordingly. After a few more months of proding the doctors
administered two biopsies (one to my left leg and another to my left hand)
and determined that it wasn't JRA after all, but linear scleroderma. Since
then I have been through a gammet of therapies and treatments that were
experimental. It wasn't until this year that a rheumatologist was finally
able to diagnose mixed connective tissue disease with the combination of
both JRA and Linear Scleroderma.
I have been given everything from steroids (orally and intervenuosly) to
depenisilmine?(question on spelling). Occupational, and Physical Therapist
have had their way with me from water therapy to wax paraphin dips. All of
my joints have been affected as well as skin patches on both hands, chest,
legs and under the left arm. My hands are both affected to the point that
when I went to my newest rheumatologist all he could say at our first
meeting was "this is messy" as he looked at my hands (hehehehe)! I have
slight involvement of the esophagus (cricopharyngeal spincter and
esophogeal spincter for those who have more medical background). I also
have some lasting effects of the steroids I took when I was seven which
include cushoniod hump on my back and necrosis of the femor head on both
hips. I spent many months in and out of the hospitals throughout my life.
Praise God that when my family made the move from Port Townsend Washington
to Vancouver Washington, I was accepted to Shriners Hospital where all of
the care was paid for by the Shriners. If it weren't for that, my parents
would be in more debt than they already are.
I have had 4 surgeries. My bones didn't grow in width, only in height from
the time I was eight years old. As a result, I had two broken bones that
needed repair. I also had surgery on my left hand to bring out the
fingers. My hand was stuck in a fist and washing was difficult, so the
doctor clipped the inner set of tendons and gave me a joint replacement in
the top three joints of the last three fingers. The bottom two joints of
those fingers were fused. I also had surgery on my right index finger. I
feel very fortunate to be where I am now. I went to junior college and
recieved my Associates Degree. I was able to then move on to a four year
institution to recieve my Bachelor Degree in Speech and Hearing Science.
Last year I was accepted to a master program in Speech-Language Pathology
at WSU where I have spent the last eight months working on a master
degree. I had a class load equal to the other full time students and had
the wonderful opportunity to work with two clients a quarter. I lived in
Spokane Washington in my own appartment and attended school. Since then I
have decided to change my career direction. I did very well in my work at
WSU, but was not feeling fullfilled there on a personal level. I am
currently applying to a Master program in Marriage and Family Counseling
at George Fox University in Portland Oregon. I am taking methotrexate for
the first time and am doing well.
My main mode of transportation these days is an electric scooter (brand
new through Medicaid). Ol' Tess (my old scooter) has been put into
retirement after six great years of use. I am looking for a new abode in
the Portland area, but in the mean time I live with mom and dad. The
rheumatologist tells me that my tendons in my hand are so tight that one
day soon they will just pop and I'll need surgery on that. I'm biding my
time to keep the function. I am also biding time on hip replacements. As
long as I can handle it, life is grand. I want to keep function in my
hands because I am an artist.
When I'm not in school sticking to the books like glue, I like to draw,
paint, play with clay, write peotry, sing, read, shop, and party with the
gang (no drinking of course due to methotrexate). I am involved with the
local Sclerderma support group as well as a variety of other church
groups. I love life and it loves me! God is gracious and kind and it's
only through His strength that I am at the place I am. I've never been
healed physically, but emotionally he heals me everyday. If anyone would
like to be in contact with me, feel free to e-mail. I would also love to
talk with anyone who is interested in our local chapter of the Scleroderma
Support group in Portland, Oregon. Thank you for reading my story. God
Bless. I made it to 24 and am very close to 25! Praise God!
scootergirl22@hotmail.com
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