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"My Story"

My name is Roz and I have been diagnosed with Scleroderma
(CREST FORM)since 1981 and Rheumatoid Arthritis since 1997.
Heres my story...( get comfortable ). In 1991 I was building
my dream house on the coast in Northern California. I got an
infection in my forefinger and it didn't heal so I went to my
doctor...who sent me to a Dermatologist. The specialist did
what specialist's love to do. He took one look at my finger and
ordered enough tests for about four people. When I went back for
my follow up visit he told me that I had Scleroderma (SD). He
left the room so fast that his shadow couldn't keep up! I used
his office phone and called my primary care physician (pcp)
who said drop by on your way home and we'll talk. My pcp
counseled me about SD and told me that I had to learn to be an
advocate for myself. He said I had a rare disease that most
doctors didn't know much about...himself included. He gave me a
huge hug and said,"We'll do this together". Twenty years later he
and I are still doing it together, he is my advocate at my HMO
and my friend. I don't know where I would be today without his
caring and concern. I started reading about SD because that is
how I learn. I got books from medical libraries with help from my
pcp. I didn't feel sick but the more I read the more scared I
became. It appeared that my life had taken a real turn downward
and most literature said that I had a limited lifespan.

Mt pcp kept checking me each month for signs of change. He kept
telling me I had to relax and not be stressed. Not easy when all
the information I found told me that I was a dead woman. I looked
for support groups but found none. I had an active life. I owned
my own business...taught as an adjunct instructor at a community
college and was an active volunteer in my community. I put in 18
hour days. Then in 1989 my body started falling apart. My hands
ballooned up like catcher mitts, the skin on my face and arms
started to get tight. There was no warning. I just woke up this
way one morning. My pcp said it was now time to see a
Rheumatologist. I was scared and very stressed. I thought this was
it...the end is here. My Rheumatologist put me through a gambit of
testing, lungs,kidneys,liver and heart then she started me on drugs.
She taught me that I should be connected to Stanford University
because of my SD. I started going there once a year to have their
team of specialists review my records and see if there were
suggestions for treatment. That is how a three way connection was
set up between the medical people who take care of me today was
established. These three doctors have regular sized egos and are
collaborative in nature. It is because SD is a "designer disease"
different in each one of us and these three people are interested
in my welfare and don't mind a challenge.

I volunteered skin punch biopsies and blood samples at Stanford's
research studies. I wanted a cure! I didn't feel as scared but I
did understand that I was getting sicker. I felt like I was still
in control. I had knowledge about SD. My Rheumatologist told me
about the SD Foundation and I went to their main office during a
vacation. It was the first time that I had met anyone else who
had SD. I will never forget it...her face was tight and her hands
curved and she seemed to be in lots of pain. I was determined that
would not be me. With the help of my medical team I spent four
months at a hand clinic where I learned many tricks in taking care
of my puffed hands. I learned biofeedback techniques to help me
keep my fingers warm. I started going to meditation classes. I
sold my business and tried to par down my life. My friends were
great, they encouraged me and nurtured me. They cheered me on.
The drugs seemed to be working and my body went into remission,
life was getting easy again. I coasted along for six years, not
being in pain and able to use my hands again. I had a life returned.
In 1993 I moved to Portland,OR. because of my husband's employment.
The weather was much colder there and I started to suffer joint pain.
The Rheumatologist I was seeing there basically ignored my complaints
and told me I was fine. I knew I wasn't fine because I felt awful!
I never did find medical care there that met my needs.

I couldn't even find a pcp who understood SD. It is very scarey when
your pcp doesn't know more than you do about your disease. Portland
did have a support group for SD so I joined and learned about Dr.
Furst in Seattle. I went to see him (with records in hand) and was told
that I just wasn't "sick enough" for any of the studies being conducted.
I was feeling rotten most of the time. I went to a SD conference in Los
Angeles and got new information and went back home armed for a
medical fight. I wanted to feel better. Each day was a struggle to get up,
go to work, stay awake and function. I could feel myself going
downward .I knew my remission was over but I didn't know where I was
headed. I did feel knowledgeable about SD and argued with every
medical person whose path I crossed. I wanted to feel better and
this wasn't "in my head". Through a fluke I got offered a full time
job at the community college I had worked at in California and jumped
at the chance to return to warmer weather and better health care. I
made the rounds of my three former caregivers, had a battery of testing
and was told that now in addition to SD I also had RA. Every drug I was
given to relieve the joint pain made me feel worse some place in my body.
I couldn't stop being sick and no one could figure out what to do to help.
I was feeling desperate and depressed and very, very, very ill.

In 1998 my feet started to hurt. They hurt so much that walking was a
monumental task. I was worried and extremely scared once again. One
morning I woke up and my right foot was purple. I called my pcp and
Rheumatologist, they took one look, ruled out blood clot and I was
sent to Stanford University. This was the fastest HMO referral and
authorization in all medical history! I had gangrene in my toes. It
is still painful to talk about this, but I'm writing this to help
others. In a two year period of incredible pain, hospital stays
(7 total), amputations (4 total) and a drug fog I have climbed
back up to be with the living. My right leg was amputated three
inches below my knee on January 17th,2001. I now have a prosthesis
and Im learning to walk again. Some day I'll be able to come back to
this page and elaborate more on my "foot saga", but right now I
really can't go there. The circulation in my right foot shut down
because of Raynaud's which is a part of my SD ( it is the "R" in CREST).
I have a life back and I no longer feel ill. I can deal with
the joint pain that I have because of RA. New drugs on the market have
helped me a great deal and don't tear up my gut. I don't work, I live
on disability from my previous employment. I am grateful to not be in
pain any longer or a drug fog ( my pcp refers to this time period as my
("chemical vacation").

I am happy to be back in the world. I no longer feel scared all the
time. I have learned much about my strengths and what I value in life.
I know that stress is a trigger for me and I have changed my lifestyle.
I don't have regrets and I look forward to the future. I hope my story
has been of value to you. If you want to contact me you can do that via
this page. If you have an autoimmune disease know that you are not
alone in this world or your struggle. Please join me in letting the powers
that we know that we want research funding for autoimmune diseases so
the next generation will be able to find a cure. Go in peace.

This story was a written on August 18th, 2001.

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