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I grew up in Framingham, Massachusetts.
And they told me that I had Juvenile Rhumatoid Arthritis
and at that point that's all that they knew.
So I started with my first bout of CRPS at
8 years old, um...
I had the RSD for several years before that just undiagnosed
probably since like 6 years old
and I was just dealing with it without medications, but it was
pretty bad. My biggest frustration is that people
don't listen. It has taken
me a very long time to get the physicians that
care for me in the way I feel I need to be
cared for. I've search high and low
to find doctors that have been appropriate for me.
When you have a patient come to you and has been through
a lot, listen to your patients. They often know
better than what the textbook says. They might not have
all the symptoms, but your patients know what they're going through.
And that's a big thing I've learned over and over and over
going through all my issues.
I've been told so many times that I'm a psych case
because it doesn't fit the book, and then
eventually, years down...
the road they figure out what it is.
And, I've finally had doctors say
well patients like you, you don't fit the book
you write the book. Well but that doesn't help at the time
when I'm going through the issues and they are telling me that
it's just impossible.
People with disabilities are people. They're not just numbers, they're just
statistics, they're not just you know...
people that they are going to have to deal with and they're going have
to do things for. But we are actual people
and that we have feelings and that we have emotions, and
that we are going to be coming through they're hospital doors, looking for care
equal care -- equal access to care,
and that's what they say they give
equal care to all patients that come through their doors, but they're not
giving equal access to care to people with disabilities.