Re: Welcome - Terri

[Guest guest]

Hi Terri

Welcome welcome

You have landed in a safe place.

We will try to help you with info, experiance, and support.

We will be more than happy to try.

Wow, youve had a rough go of it, and for that, Im really sorry.

This virus is really hard on some folks, and others seem to breeze right thru.

I am don in kansas, 59, 1B, no treatment or biopsy yet, DX'd in 2008.

I try to be the research guy, to help everyone find info.

I am also the one who is building the HCV Links Library, to help us all have HCV info in one place.

Click this link.

http://health.dir./group/ /links

Terri, please feel free to talk with us about anything that you need to.

You will see that we talk about most stuff because the HCV seems to affect every aspect of one's life.

The only thing we dont do is fight or spam, because sick folks dont need this.

Hang in there my friend. Your not alone and loved, so never give up.

We will talk more.

love

don in ks

From: Terri Amacher <terramac@...>Subject: [ ] Welcome Date: Friday, June 25, 2010, 10:30 AM

Hi Everyone,

My name is terramac( for terri). I am 50 yrs old. I was going to say young, but lately thats not quite the truth. I have four great kids. Only one is still at home. She is just starting HighSchool this fall, so we'll see how that one goes...She really is great though. She has had to put up with a sick Mom, something the older ones didnt have to worry about during their school years. That is ONE of the things that makes me mad about this disease.

I found out I have HVC is Aug. 2005. (I was infected during a surgury I had following a car wreck,the day before I turned 21.) I had been feeling absolutely drained for quite a while, but everyone said "your just getting older." I was thinking,NO, this is not normal, so went to Dr.and he did some blood work that showed that i had Hep C. What a Shock. I literally dropped my jaw. WHAT? He Scheduled biopsy right away and it came back 3/3. Then I started Peg/Rib treatment. It was like bing, bang, boom. They had me all lined out, and my head was still spinning from finding out what I had on Hep c. I went to the bookstore and started reading. That helped me alot. I needed to understand what was happening to me. I would recommend this to anyone who first finds out about having Hep C. they say "knowledge is power".

I am genotype 1b. My first round of treatment didnt work. I didn't even cleared, so they took me off at 5 mo. and said see ya. I really felt lost then. I have this virus in me, growing and Im just supposed to pretend its not there? I had started having joint pain at that time that I didnt understand, but was becoming quite intense. They said that Hep C can cause this and Interferon can cause this, no way of knowing which one. Great! The joint pain was getting pretty bad, so they put me on vivoden to take as needed. I was tested for cryroglobulemia(sp), neg. My Doctor then recommend we maybe try daily infergen shots. I started this treatment and was on it for 10 months, but still did not respond. Daily infergen treatment is a very brutal treatment to go through. I was very, very ill during this time. I, myself, had to try, or I would

always wonder if that might have kicked it. By this time my pain had progressed to where my doctor had started me on morphine for relief. I finished the infergen in june of 2008.

I was also having terrible whole body sweating attacks that had been going on since before I was first diagnosed. these attacks happen 6-10 times a day and can last for an hour or more. My clothes are drenched. My skin is red, cold and clammy. My skin actually feels a shock sensation when the sweating starts. It is NOT like exercise sweating, at all. Hormone imbalance has been ruled out. I searched the web and talked to countless doctors and i can find nothing on this. I had started taking gabapenton for the joint pain and this actually helped relieve my sweating problem. I wonder why?

I have been diagnosed with fybromialgia and neuropothy, from the Hep c or its treatment. My medications seem to be in a good balance now, to try to have some quality of life.

I can no longer work, I can hardly walk some days. my hands and feet hurt, my joints hurt. THIS SUCKS!!

I was a very active person before this Hep C caught up to me. My doctors say im not coping well with the acceptance of my illness. I hate my illness. I want my old self and life back. How do I cope with that??

Im joining this group, because Im hoping to find some way to get through this. I need to be able to talk or think about my illness, without crying. (and yes I take anti-depressants) Obviously I need help. So.... here I am.

Terri