My life has always been one of turmoil but some of the pieces started to
fit together when I was diagnosed with Hep C in October of 95.

For the last few years I was consistently becoming weaker and more
fatigued, getting to the point of hardly being able to get out of bed. 
The aching went from mild to severe.  The memory loss and confusion made
me think I was getting the Alzheimer's disease I had just lost my
grandma too.  The boundless energy, love for life, and adventure were
fading fast.  I started to think I was either getting old fast, the
stress from my job was too much, or the depression that used to rule my
life was coming back to haunt me.

About a month after losing my cat of 13 yrs. (was like my child), I got
very sick and the doctors couldn't seem to find anything wrong.  They
did test after test and then finally one doctor asked me if I had ever
had a blood transfusion.  I thought back to the 18 yrs. before when I
lost my baby through Placenta Previa and remembered the three units of
blood that were given to me.  I couldn't figure out why something I had
that long ago would be responsible for my being sick that day.

A week later the doctor called me at work and dropped the bomb.  I had
Hepatitis C. Not knowing anything about it, I asked what we could do to
cure it and was told there was no cure, but that it was nothing to worry
about.  I thought, well if it was nothing to worry about then why did I
feel so bad.  I was sent to a hepatologist in my area who really didn't
think there was any reason for my complaint's as my LFT'S were not too
far above normal.  I was told it was probably something stemming from a
psychological nature.  I kept getting sicker and sicker.

Realizing that no one seemed to know much about this disease, I started
doing my own research.  I made an appointment with the doctor, and asked
if he had done a PCR.  He said no, but said we should do one being that
I was still having so many complaint's.  After that came back positive,
a biopsy was then set up.  A couple of days after the biopsy I was told
everything looked fine but that he wanted to send a sample down to the
University for further evaluation.

Two weeks went by and I was thinking that everything was great with my
liver and that he must have been right.  The only reason for my
complaint's was the depression coming back.  Then I got the phone call
telling me things were not all right, that I had active hep with
fibrosis.  He said he wanted me to go down to the University for
Interferon treatment.  A few weeks later I started the Inf.  It was
rough at first, but I expected worse.  I was praying that this would
cure everything.  Struggling at work and home, I thought, if this works
it will be worth it all.  Three months later I was told to stop the
treatment as I wasn't responding.  My doctor looked at me with hope and
said that I would qualify for the upcoming trial of Inf/Riba.

My husband tried to help me through all this but could only stand by and
watch what he once saw as a strong woman full of life, becoming someone
that was totally dependent on him. 

My career as a car salesperson was one I prided myself in doing a great
job of.  I used to love to go to work.  I loved my customers as I looked
upon them as my friends.  My muscles and joints ached so bad that
running across a car lot to wait on customers was becoming impossible. 
The long hours, the snow removal, the intense concentration required,
the happy energetic attitude was becoming a struggle I couldn't fight
anymore.

About a month ago I was put in a position that gave me no other way to
turn.  As of this week, I've had to start the process of SSDI.

I'm now feeling the pain of losing the ability to work, of providing the
part of the household income that could cause us to lose everything we
have, of putting the heavy burden on my husband who is already so
stressed and fearful, and of losing my medical insurance.  I feel now,
I've become what some would call a "useless member of the human race."

The other day when I was at the courthouse waiting for my lawyer, I was
watching people go by, smiling and laughing, running up and down stairs,
going from one job to another.  I thought, God, how wonderful to be able
to do that.  How I longed to just run up those stairs.  How I longed to
be running around at my job, feeling like I was contributing, and
feeling pride in myself.

Then the pain in my side grabbed at me, my muscles and joints were
aching so bad I could hardly sit, my stomach was feeling so upset.....I
was so exhausted I only wanted to go to sleep.  As I was trying to sit
there a feeling of total fear ran through my body.  Reality struck.  I
couldn't run up and down those stairs anymore.  I couldn't run around at
my job like I used to.  I wasn't healthy and energetic anymore.  I felt
like a crippled up, tired old woman watching the world go by.

The hurt was overwhelming.  I sat there and all I could do was cry. 
People walked by and looked at me.  I could just imagine them thinking
"Man, what's her problem."  I wanted so bad to tell them how lucky they
were.  How I envied them.  How I wanted to do what they were
doing..................

I've had comments made like "Oh I hear you're now a lady of leisure,"
"How I envy you being able to sit home and not work," or "You know, some
of us DO have to work.  We can't all sit at home and relax."  Each time
I hear a comment like this, I die a little more inside.  If they only
knew how I longed to do these things they are saying I'm doing. 
Relaxing and being a lady of leisure.......NO!  I'm a lady that's sick! 
I'm being made to feel like I'm sitting home enjoying myself at the
expense of others.

Accepting this fate is the most defeating feeling I've ever had. 
Accepting the fact that this sickness may get worse and not better, and
that I may never be able to go back to the energetic, and productive
person I was.  Accepting the fact that I'm going to be made to feel like
crap by the system I'd paid into for years, and made to have to grovel
and beg for help just to survive.  To have my already weakened self
esteem all but taken from me.

For those of you that are asymtomatic, I pray you stay that way.  I wish
no one had to ever face the humiliation and defeat of this.  SSDI is not
to me something that is a victory.

I know that being the person I am, I will overcome this and find a way
to make my life productive again.  I may not be bringing home money, or
be in a structured job, but I'll still work to help others.  I'll find a
way to come out of this with my head held high.  I refuse to be taken
down and kept there.  I'm a fighter and will find a way to beat this. 
But for now, I am forced to go the route of something that is tearing me
up.

Through all this much good has come.  I've found a group of doctors and
nurses that have been nothing but great!  They've been there for me,
actually listening and believing.  They haven't trivialized my pain or
made light of a situation that has been to me, a very devastating and
defeating one.  I met a lawyer who was so kind to offer her services and
help at no charge, not once making me feel guilty for not having the
funds to give her.  My family and friends have been there with so much love, 
writing letters to congressman, and any other place they could think that 
would help.  My husband has stuck by me and tried to understand and accept
this cruel disease and the underhanded way it has affected our lives.

I started a support group through Hepatitis Education Project.  I've got
some of the most special people in the world in my group.  One being a
little 13 yr. old girl that I consider to be like my own.  The support
group was started with the help of Sara Amber, opening up doors of
communication so that people that once thought they were alone, found
they had friends they could turn to.  Jamie has been through the whole
thing, interpreting biopsies, blood tests, guiding my way through the
Inf., taking my frantic phone calls, and just being the loving,
unselfish friend she is.  

One of the best parts of this whole thing is the beautiful family I've
acquired through the list.  The most caring and loving people in the
world.  For this I have Jeanne to thank.  When I was so alone and
scared, being newly diagnosed, Jeanne got me hooked up to this great
family. She has since shared her love and become the "sis" I never had.

Why things happen as they do, I'll never understand.  I know there is a
reason for everything.

Vikki   - [email protected]