I am a 29 year-old wife and mother of three daughters, ages ten,
eight and three years. I have been diagnosed with Reflex Sympathetic
Dystrophy /Chronic Regional Pain Syndrome.
On March 21, 2002, it was a normal day as usual. I was working
overtime hours for General Electric as a Collection Specialist
while my husband was home for the night (he was an over-the-road
truck driver and would be gone for days at the time), getting
our daughters ready for bedtime routine.
I arrived home and went to tuck and say prayers with my daughters.
I shut the lights off, walked out of the room and tripped on a
piece of carpet that was on the stair landing, which made me fall
down seven stairs. I knew I was in PAIN! I cried out for my husband
who had to carry me downstairs. I had to wait for my brother to
watch my children before I went to the hospital. It seemed like
hours went by, then the doctor said that I would have to see an
surgeon for my right knee.
I was off from work and the bills started piling up. I was finally
able to see a surgeon and he said that I had "chondromalicia
of the patella in medial femoral." I was like, um, ok what
do we have to do to get this fixed? I was scheduled for out-patient
surgery on May 9, 2002. I was in so much pain, but of course everyone
said that you just had surgery and need to rest.
My doctor told me that I was going to have a hard time with my
knee/leg because it was "Grade III chondromlacia of the patella
in the medial femoral." I was "totally disabled"
which in my terms means no end of month bonus and no money. I
was getting partial payments; then in January 2003, I was told
by General Electric that I "abandoned" my position and
was terminated.
So then I had to apply for Social Services which was the most
awful experience that I ever had to do. I felt so belittled and
ashamed that I had to get hurt and not be able to work. I am still
in a lot of pain and still "totally disabled." I finally
was referred to a Pain Specialist and was diagnosed with Reflex
Sympathetic Dystrophy/Chronic Regional Pain Syndrome. I just started
crying to my doctor and said "thank you" because until
then I felt like I was crazy and it was just in my head. My family
didn't even believe how much pain I was in.
I was crying one night and couldn't even have the blanket comforter
touch me because it was too much weight on my legs. I was even
scared to go outside if it was too windy. My children can't even
touch me which hurts the most sometimes. I just bite my lip and
deal with the pain so I can just enjoy a moment with them. It
feels like 1000 pin needles poking me all at the same time. Then
it starts getting fire-burning all down my leg. I was getting
scared and the pain just increased more and more. I was told by
my pain specialist I would start to get regular nerve blocks and
injections. I'm up to about 30 injections from my neck to my spine.
I was very athletic growing up - always in baseball, softball,
basketball, volleyball, up through my adult life. Now, I can barely
move. I want to be able to sit through a soccer game for my daughter
to cheer her on, but sometimes I just can't anymore. I am Native
American from the Seneca Nation on the Cattaraugus Indian Reservation
and have been the first in this area to be diagnosed with this
disease. At this time, I am trying to fundraise just be able to
get the special physical therapy that could save my leg. I haven't
had any feeling in my right leg since August 2004.
I have been trying to get awareness out here and trying to get
treatments earlier. Now RSD is rapidly taking over my body on
my left side, back and now going into my arms. I am only 29 years
old and feel like I'm 60. I am still pending for SSI and SSD,
and still totally disabled. Hopefully, I won't get denied again.
I have to thank my husband, Bryan, for everything. He was able
to get me a used computer so I was able to talk to people who
are going through the same thing. I'm going to fight to make sure
that RSD/CRPS is taken serious on my reservation and in my area
of New York!
