My name is Karen
Bell but every one knows me as Coffee, a high school nickname
attributed to my massive consumption of the heavenly liquid.
I live on the coast in Rhode Island, where I ended up during
my hitch hiking day's way back in the early 70's. I am a 51-year-old
artist and mother of 2 boys, Sean, 29yrs and Justin, 18yrs.
In 1994 I donated blood. A few weeks later I received a letter
from the Red Cross informing me that I had Non-A Non-B Hepatitis.
My efforts to discover what exactly this meant for me seemed
to go nowhere. My Dr. basically told me to go home and not
worry about it. By 1998 the affects of the Dragon were beginning
to take a major toll on my body. My Dr. sent me to a specialist
and a decision was made not to start treatment as I had lost
substantial weight already (was 105 lbs) and she didn't think
that I could tolerate it.
That year, my new found Hep angel and leader of my support
group, lost her battle with the Dragon, my abusive marriage
fell apart for good and I lost my house and bought a 21' camper
(the Dragon Wagon). I rented a room for the winter and lived
in my truck for the summer. Since my kids were pretty well
grown and I no longer had material possessions to worry about,
I filed for bankruptcy, began educating myself about HCV,
forced myself to gain weight, made the decision to start treatment
and buckled down for the ride.
In January of this year I informed my boss, in a small art
studio, that I had decided on treatment and would start in
February. I had medical coverage through work and my boss
I received a phone call from my eldest son the first week
of February, informing me that my first husband (his father)
had been admitted to the hospital in the final stages of cirrhosis
(HCV) and it didn't look good. During that week my son had
to make the decision to cut off life support and allow his
Dad to pass. I went with him that day and together we held
each other and stayed with Cliff for the 8 hours it took for
him to pass. There just are no words for the way that day
affected both of us. One week later, to the day, I took my
My sides were brutal but my determination was strong. I began
working 1 day less per week and managed to carry my weight
the rest of the week. My life, like so many others, had completely
changed. I lost most of my hair and all of my pizzazz, my
wbc count dropped, my bone density went severely low, and
I developed arthritis and emphysemic shadows on my lungs.
Some days just walking my little dog Kesey is a challenge.
In May, after coming face to face with an extraordinary amount
of ignorance in both the general public and the medical community,
I decided that the world needed to have a book written by
the only people who could truly educate them, the courageous
people who were dealing with HCV and the devastating effects
of treatment, the Dragon Slayers themselves. That was when
I started HepCAwareness
In April and May my boss hired 2 new people to work in the
studio. In June she explained to me that the money was tight
and that she had to let me go. Since I had worked there for
4 years and been a very reliable and hard working employee,
it didn't take a genius to figure out why I was the one to
go. Since it was a small business it wasn't covered by Cobra.
After a million phone calls all of my options have run out
and I find myself without any medical coverage. I just had
my 6mth PCR done and my viral count went down but not enough
to be considered a responder. I suppose that since I am a
1a genotype that the decision to stop treatment at this point
may have been made anyway but I'm (((ANGRY))) that that choice
was taken out of my hands!
I intend to direct both the anger and compassion I feel towards
my commitment to make the rest of the world outside of Hepperland
aware of what is going on. I have read hundreds of compelling
stories from fellow Dragon Slayers and our stories need to
be heard. I am a firm believer that everything happens for
a reason and I refuse to be a victim. My mission is clear
and my resolve is firm. Look out world here I come!
Be blessed, be
You can reach me at: HepCAwareness@aol.com
This is my on-line
art gallery: http://www.DragonflyGalleries.com
here to return to the member stories list