Re: Hi there Terri ( Terramac)

[Guest guest]

Hi! I am Trudy. I have genotype 2 stage 2 plus with active fibosis( biopsy 11/2009) . I have not yet done Tx due to it taking a while to get a handle on how to deal with pain issues. Turned out it is Fibro, taking Gabapentin 300x4, not a miracle, makes me Fuzzy...but helps with pain but not all the time, I also have Renauds syndrome...vascular deteriation in hands and feet. Cannot tolerate cold, not even holding a cold soda..Lately I find I am constantly dropping small items( keys, silverware etc) due to spreading and relentless numbness. But I quess I have finally after 3 yrs since dx ,made it thro all stages of grief. Except with tx coming up there is another stage...Scared Shitless Stage !! I have recently decided to deal with pain, push thru it in times I thought I couldnt, cause I am re claiming a good amount of my old life! Not going to give in to this disease another day! This is MY LIFE and I AM AWESOME ! now my

life needs to reflect my AWESOMENESS ! Will never be a better time than TODAY to step along on the journey that puts my value and uniqueness in the world, If you are on Facebook many of us are too. And if so Teri ( my Twisted Sister LOL) can send an invite to our page called Silver Linings. It will help put all into perspective. And make you smile. Smile a REALLY big SMILE.

WELCOME and SIT A SPELL....Trudy in it is always OKhttp://www.facebook.com/people/andTrudy-Kinsey/1340460877 " A well-behaved woman never made History" Trudy

From: Teri Gottlieb <theresagottlieb@...> Sent: Fri, June 25, 2010 2:02:53 PMSubject: Re: [ ] Welcome

Terri,

It seems like you and I have a few things in common, and not just our name. I am 52, was diagnosed with Hep C Type 1A in 2004. After the biopsy they determined I had this virus in my body for about 25 years. Counted back, 5 units of untested blood in 1980 when I had my son.

I was in shock when I found out I had Hep C. It's strange but my biggest fear was how was I going to tell my husband and my son this. I had re-married just 3 years before my diagnosis and he didn't sign on for this... and my son, the virus came from blood I received due to loss of blood when having him and being severely anemic to start with. I didn't want him to feel like it was his fault. It took me years to tell him how I got the virus and actually he took it quite differently than I expected. The difference between you and me at this point is nobody rushed me into anything. It was about 10 months from diagnosis to the time I started tx. I had time to adjust and get ready for it. I had time to make a decision and not have a decision made for me. What I didn't know at the time was that if I didn't start tx I was about 6 months from being put on the list to wait for a new liver. I was

told this about halfway thru tx. I went thru 48 weeks of Peg-Interfuron and Ribavirin and thought every day would be my last. Fever, chills, shaking, nausea, you name it I had it. I even lost my hair twice. I also needed 3 blood transfusions during that time but got away with just 2. Treatment was no picnic for me.

About 3 months into treatment I noticed my brain was not acting right... I couldn't remember things... like names of people I'd known for years... or words. Our house became an endless game of charades. My husband got quite good at it actually. I was trying to find the word hurricane in my head and all I could come out with was water and I made a big swirling movement with my hand... Hubs popped out with "Hurricane?" Yep. that was the word. This went on and on and I was told it would go away after tx was over... nope, still have it. I also started getting these horrible pains. I called the doctor, got the nurse and told her that I was positive I had broken my leg during my sleep. And then I told her I was talking about the big bone and it was my right leg. She told me over the phone to stand up. I did. She then told me my leg was not broken and it was the treatment. Vicodin.

Lots of them. What no one realized was that right about 3 months into treatment Fibromyalgia reared it's ugly head. And you're absolutely right, it sucks.

I wound up clearing during tx and have been SVR for 5 years now. The Hep C is gone but the Fibro lingers on.

Sounds like what you are describing is a hot flash. Those suck pretty much too. I wound up needing a hysterectomy 18 months after I finished treatment. What you are describing is what happened to me for two weeks straight 24/7. It would cycle with me... the hot flash would last 20 minutes followed by 10 minutes of freezing followed by 20 more minutes of heat... it was horrible. I was on hormone therapy for a year, then stopped that and the hot flashes came back for about a month then they went away. I still get an occasional one here and there but not enough to even count. Maybe 2 a month.

I haven't been able to work since I started treatment. There are days I can't get out of bed. Then there are days that I feel almost halfway okay and I push myself to get stuff done.... Like now.. I'm in the process of moving... I actually have to move on Tuesday of next week. I will over do it one day or for two days and then I am a mess for a couple days after that. I doubt very seriously that I will ever be back to my old self again.

Your doctor's saying that you are not coping well with your illness..... there's a reason for that. When you were diagnosed with Hep C everything went really fast... from diagnosis to the start of treatment. When someone is diagnosed with something as serious as Hep C, there are 5 stages that the person must go thru in order to cope. These are the same 5 stages that you go thru when you lose a loved one. It's called the 5 Stages of Grief.

Stage 1: Denial and Isolation

Stage 2: Anger

Stage 3: Bargaining

Stage 4: Depression

Stage 5: Acceptance

It seems like things went so fast for you right from the start that you never got thru these stages.... From your message it sounds like you are stuck in stage 2. There is no time limit on each stage but usually the whole process takes a few months. It sounds like you didn't get the chance to go thru these stages before you were thrown into treatment... and then the treatment didn't work. That would start the cycle all over again.

Don't lose hope, there are new treatments for Hep C in the pipeline... I've heard they should be available as early as the end of this year. There are clinical tests going on right now all over the world. As for the Fibro.... I've heard Celexa is not the most liver friendly medication and it's extremely expensive. I tried the Gabapentin but it did nothing for me. My doctor just put me on Amitriptyline and so far its working.. slowly but surely. I also have Norco for the days that are unbearable. Since I started on the Amitriptyline I haven't needed the Norco much.

I know, you got dealt a bad hand.. we all did. It sucks. Every person on here would probably give their right eye to be the way they were a day before they got infected. Here is the good part, you have found a soft place to land. A group where everyone cares and everyone is willing to help. Welcome to our little world here. I think you will find the experience comforting.

Hugs,

Teri in Chicago

From: Terri Amacher <terramac (DOT) com> Sent: Fri, June 25, 2010 10:30:36 AMSubject: [ ] Welcome

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