Re: Treatment etc.

June 11, 2004

Terry...

So many people have such an awful time on treatment...and for too many people

there are after effects. And at the same time many people seem to breeze through

treatment. We don't really know the extent of damage from treatment....they

aren't interested in providing that information...and certainly don't want us to

know the things that treatment can bring on. Shucks, they don't even know all

that much about the effects of hep c on the body other than liver damage...and

in the last couple years they've learned that it causes some forms of dementia.

I think the reason why we are told over and over again to drink lots of water is

because the build up of ammonia has a terrible effect on the brain. It's called

encephalitis (sp?) and is a horrible thing. One of my brother in laws had it for

several months before he died of liver failure. He couldn't even remember how to

dress himself. I keep that memory in my mind as I'm struggling to drink all that

water...

But I don't think any of this was what Alley was talking about. She was talking

about a 20 year high school reunion...people who hadn't seen each other for 20

years getting together. And when people in a situation like that ask how you

are, they don't really want to know.

Alley has gone through so much over the years. She too suffered horribly with

treatment...and then had a cancer that the treatment was large doses of

interferon. But she held on to positive thinking and survived treatment and then

the cancer treatment. She had some awful years and that shouldn't be

discredited. And she still lives with awful headaches. She's been an inspiration

for many of us.

Headaches sure seem to be a re-occurring theme. I don't know if it's treatment

or the hep. However, I lived with migraines for many years of my life and when

on rebetron, they went away to never return. Yet other people who haven't dealt

with horrible headaches in their lives, get them during treatment and live with

them post treatment. That goes to show you that treatment does have some affect

on us that has yet to be explained.

Headaches ... the worst thing about headaches is that you can't disassociate

from them. We seem to be able to disassociate from individual pains in other

parts of the body...but lose that ability when the pain is in the head...or when

it's a systemic pain like joints, etc.

Why we all react to treatment so differently, I don't understand. Doesn't seem

to have anything to do with how fit we are or how healthy we are despite the

hep. This has come up often over the years. Strange that with treatment like

chemo, the sides are so predictable while the sides from hep c treatment are so

different from one person to the next.

Wow, I've really rambled on...didn't mean to do that. I still have evening

chores to do...and my shot...and, have a lot of mail to get through before I

head to bed. I've been reclaiming my life from the internet...

BTW, 3 more shots to do and that's counting the shot for tonight. After it, 2

more weeks and then I'm done. Waa hoo...the light is getting brighter at the end

of this tunnel.

Blessings

Tatezi

I agree with you about not elaborating on sickness and being positive, but

you seem to be able to do more and have a more productive life than some of us.

You have a full life. When everything you do is a struggle for the energy to do

it, and many things you love to do are taken away from you, it is a different

story, though I still lie to many people and smile, when they ask, how are you.

June 11, 2004