Re: It's hitting me!

[Guest guest]

ok diane...it is time to stop relying on the husband that is unreliable. I

am sure you did not get this far in life without some inner strength...NOW

IS THE TIME TO FIND IT! There are several options that you have. You simply

have to want to chose them. First,do you have a telephone? Second do you go

to church..that is within walking distance? Third do you want to stop being

sick and tired of being sick and tired...if so,let me know and I will give

you many options to get yourself well...with or without your husbands

cooperation..and,it does not have to get worse from here!

>From: " & Diane Gray " <dustygray@...>

>Reply-

>< >

>Subject: [ ] It's hitting me!

>Date: Fri, 26 Oct 2001 21:08:32 -0700

>

>Claudine,

> I really wanted to go to the conference this weekend. It looks like

>that isn't going to happen. I need my husband's active participation and

>support in this and I'm just not getting it. I feel like I'm going through

>this alone. I haven't been able to find a doctor; I was hoping to find one

>at the conference. But, even if I find one I can't get there without him

>taking me and he has said that I'm asking too much. He says he needs his

>days off to just rest. I have a hard enough time getting him to take me to

>do the grocery shopping. I am tired of nagging him about it. I'm not

>going to nag anymore, I refuse. If he won't go buy groceries, I'll go

>hungry (he eats at work). If he won't help me find a doctor, I won't have

>one. I'm sick; I'm tired and I'm in pain. Where is he right this minute,

>he went to see his friends. I'm alone. I can't fight this thing alone, I

>just can't do it. From a simple practical point of view, there isn't a

>doctor within walking distance.

>

> I want to thank the group for all of the information that's been

>sent. I wish I understood what it says. It might give me some hope. But,

>it's just over my head. The one thing I do understand is that it's only

>going to get worse.

>

>Diane

_________________________________________________________________

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[Guest guest]

Diane,

Everything said (I guess it's ), I'm

saying too! Maybe it's time to get fed up. There is

help available, do NOT give up. My husband was not

supportive at all at first, I really thought he could

care less. It did turn out he was more scared than me,

and didn't have a clue as to how to help me, and

avoiding me was his way of coping. Things worked out

fine for me. However, it does sound a little deeper in

your case. You've told him HOW you need him to help,

and he is putting his own selfish needs first - at

least that is how it appears. Only you can decide the

truth of that. And if that is the way of it, then you

MUST think of yourself, and depend only on yourself to

get done whatever must be done. Don't be afraid to ask

others for help. Think all your options (other family,

church, shelters, friends, etc.) through carefully.

And don't give up! And, if ANYTHING is over your head,

JUST ASK QUESTIONS!!! There are no dumb questions. We

all started out not knowing a thing about this disease

when we were first diagnosed. We've been there too.

It's why we're here now. And we will do all we can to

help you too.

Claudine

--- cathy nasser <cathy11757@...> wrote:

> ok diane...it is time to stop relying on the husband

> that is unreliable. I

> am sure you did not get this far in life without

> some inner strength...NOW

> IS THE TIME TO FIND IT! There are several options

> that you have. You simply

> have to want to chose them. First,do you have a

> telephone? Second do you go

> to church..that is within walking distance? Third do

> you want to stop being

> sick and tired of being sick and tired...if so,let

> me know and I will give

> you many options to get yourself well...with or

> without your husbands

> cooperation..and,it does not have to get worse from

> here!

__________________________________________________

[Guest guest]

Dear Diane, I started a combo therapy 4 years ago and lasted only three

months because I felt my husband was ver unsupportive I again started a

program 2/25/01 and became determined I would get through this come hell or

high water because this is my LIFE and I'm in control of it!!!!!! anytime you

want to vent, talk or need some support we are all here for you!!!! I joined

this group a while ago but I haven't participated alot and I just want you to

know you have touched my heart as i'm sure you have to all of us but my

friend you must take control of YOUR LIFE! I don't know your whole story but

Iv'e been a nurse for over 25 years and I council many people there are many

community sources to get you where you need to go and then there is your

support group for friendship, Love ect.... Many Blessings, Light and Love

Lynne a fellow hepper!!!!!

[Guest guest]

Hi Diane,

I think I just sent in some basic stuff on

nutrition. If that doesn't answer those questions let

me know. Honestly, I can't remember exactly what I

sent! Yes, exercise is very important. Not only will

it help you feel better physically, but mentally too.

And you'll sleep better too! Just know your limits. If

your not used to doing much, start slow and gradually

work up to 'more'. Walking is great, but muscle

strengthening exercises are important too. As for the

amantadine - It is completely useless by itself.

Studies using it with interferon have been

contradictory. It appears that it may work best when

used with both interferon and ribavirin. Infact, there

is a study going on now using the Peg-Intron along

with both ribavirin and amantadine. Several doctors in

San are involved. There may be some in Houston

too. Amatadine has been around for a very long time

and is a really inexpensive drug too. If I were going

on treatment I would try to get my doctor to give me a

prescription for it to take, even outside of a study.

But there are no non-interferon based treatments yet,

and there probably won't be for several years at

least. Nothing is even into phase III trials yet that

I can think of. It will be long while I'm afraid. For

now the pegylated interferons are really all there is

for someone needing medical treatment.

Good luck,

Claudine

__________________________________________________

[Guest guest]

Dear ,

First, yes I have a telephone. I am not a member of a church. I am both agoraphobic (fear of open places)and xenophobic (fear of people I don't know), this makes it very difficult for me to get out. I am a member of both Abbas Daughters and After His Heart in , that's how I get my spiritual nourishment.

I did manage to make the last 15 minutes of the last speaker at the conference and the question session that followed. As a result of that I found a website called "Hepatitis Central" which gave me the names of 4 doctors in Houston. In addition a person told me that there is an organization that will give me a free ride because I am a Medicaid patient. Now all I have to do is get there name and phone number.

In March of 1995, when the doctor told me that I was going to die, I thought he was giving me good news. Since then my life has been getting better. In March of 1998 when the doctor in Las Vegas told me that I didn't have the virus I believed that God had cured me of it. Now that the virus is back it has really thrown me for a loop. In 1995 I had nothing to lose; that is not the case now. I know you can't tell it from what you've heard so far, but I am by and large a very happy person and Tom is by and large a good husband. He doesn't know how to deal with this any more than I do. He keeps telling me, 'If I could fix it I would, but I can't". He is the stereotypical " Wayne" type, 'a man's gotta do what a man's gotta do'. I'm sure you know the type.

I look forward to hearing from you.

Diane

Re: [ ] It's hitting me!

ok diane...it is time to stop relying on the husband that is unreliable. I am sure you did not get this far in life without some inner strength...NOW IS THE TIME TO FIND IT! There are several options that you have. You simply have to want to chose them. First,do you have a telephone? Second do you go to church..that is within walking distance? Third do you want to stop being sick and tired of being sick and tired...if so,let me know and I will give you many options to get yourself well...with or without your husbands cooperation..and,it does not have to get worse from here!

[Guest guest]

Claudine,

Can you just give it to me in simple terms. What should I be eating, not eating? What herbs should I be taking, avoiding? What other things can I be doing? What should I avoid doing (drinking is an obvious example)? Would exercise help? Have you heard anything about a study by Dr. Jill P. at the University of Pennsylvania at Hershey on using Amantadine for HCV? The letter she sent me in 1997 said she was getting a 67% response rate without the side effects of Interferon. Is there a treatment besides Interferon? I know that as soon as I hit 'send' I'll start thinking of more questions, but that's all I can think of right now.

Thank you so much for your support.

Diane

Re: [ ] It's hitting me!

Diane, Everything said (I guess it's ), I'msaying too! Maybe it's time to get fed up. There ishelp available, do NOT give up. My husband was notsupportive at all at first, I really thought he couldcare less. It did turn out he was more scared than me,and didn't have a clue as to how to help me, andavoiding me was his way of coping. Things worked outfine for me. However, it does sound a little deeper inyour case. You've told him HOW you need him to help,and he is putting his own selfish needs first - atleast that is how it appears. Only you can decide thetruth of that. And if that is the way of it, then youMUST think of yourself, and depend only on yourself toget done whatever must be done. Don't be afraid to askothers for help. Think all your options (other family,church, shelters, friends, etc.) through carefully.And don't give up! And, if ANYTHING is over your head,JUST ASK QUESTIONS!!! There are no dumb questions. Weall started out not knowing a thing about this diseasewhen we were first diagnosed. We've been there too.It's why we're here now. And we will do all we can tohelp you too. Claudine

[Guest guest]

I have heard there is an organization in this area that will give me a free ride to doctor's offices. Do you know how I can get their name and number?

Thank you,

Diane

Re: [ ] It's hitting me!

Dear Diane, I started a combo therapy 4 years ago and lasted only three months because I felt my husband was ver unsupportive I again started a program 2/25/01 and became determined I would get through this come hell or high water because this is my LIFE and I'm in control of it!!!!!! anytime you want to vent, talk or need some support we are all here for you!!!! I joined this group a while ago but I haven't participated alot and I just want you to know you have touched my heart as i'm sure you have to all of us but my friend you must take control of YOUR LIFE! I don't know your whole story but Iv'e been a nurse for over 25 years and I council many people there are many community sources to get you where you need to go and then there is your support group for friendship, Love ect.... Many Blessings, Light and Love Lynne a fellow hepper!!!!!

[Guest guest]

Dear Diane. I am sorry you are having such a hard

time. I am the wife of a hep c patient and am having

a hard time. I work full time do all the shopping,

bills,meals, but sometimes it is very hard and I just

need to get away for a few hours. Women are usually

the caregivers, not always you househusbands don't get

mad, and some men can't cope with the reverse of these

roles. I thank God every day that I am able to help

my hepc husband even the days that he is having a rage

attack and yelling at me for nothing. Well maybe not

those days. Anyway hang in there and pray for your

husband to have the courage to help you. Is there

anyone else close to you that can. I will pray for

you that you get some help also. A hepc wife

--- & Diane Gray <dustygray@...>

wrote:

> Claudine,

> I really wanted to go to the conference this

> weekend. It looks like that isn't going to happen.

> I need my husband's active participation and support

> in this and I'm just not getting it. I feel like

> I'm going through this alone. I haven't been able

> to find a doctor; I was hoping to find one at the

> conference. But, even if I find one I can't get

> there without him taking me and he has said that I'm

> asking too much. He says he needs his days off to

> just rest. I have a hard enough time getting him to

> take me to do the grocery shopping. I am tired of

> nagging him about it. I'm not going to nag anymore,

> I refuse. If he won't go buy groceries, I'll go

> hungry (he eats at work). If he won't help me find

> a doctor, I won't have one. I'm sick; I'm tired and

> I'm in pain. Where is he right this minute, he went

> to see his friends. I'm alone. I can't fight this

> thing alone, I just can't do it. From a simple

> practical point of view, there isn't a doctor within

> walking distance.

>

> I want to thank the group for all of the

> information that's been sent. I wish I understood

> what it says. It might give me some hope. But,

> it's just over my head. The one thing I do

> understand is that it's only going to get worse.

>

> Diane

>

__________________________________________________

[Guest guest]

When Tom came in from work tonight he said that what is going on with me had finally hit him and all he could do was go out on the loading dock and sob. He is usually good at being able to show his feelings, but not normally in that dramatic a fashion. After he told me that he said. "Oh hell, I shouldn't have told you that; I'm supposed to be strong for you." I think that may be what's going on, he's having so many feelings about this that he feels he can't share with me lest he bring me down too. We had a good talk about it and I think things are going to get better.

These radical, violent mood swings I'm going through are really starting to be a problem. I had been chalking it up to the fact I am post-menopausal as a result of a hysterectomy about a year ago. Now, I'm beginning to think that it may be the virus causing it. It seems that I'm tired all of the time and just can't 'get it together' to keep the house clean and in a house as small as ours (160 sq ft) if it isn't spotless it looks a wreck. Right now it looks a wreck and that makes him very uncomfortable and out of sorts.

We are working our way through this.

Diane

Re: [ ] It's hitting me!

Dear Diane. I am sorry you are having such a hardtime. I am the wife of a hep c patient and am havinga hard time. I work full time do all the shopping,bills,meals, but sometimes it is very hard and I justneed to get away for a few hours. Women are usuallythe caregivers, not always you househusbands don't getmad, and some men can't cope with the reverse of theseroles. I thank God every day that I am able to helpmy hepc husband even the days that he is having a rageattack and yelling at me for nothing. Well maybe notthose days. Anyway hang in there and pray for yourhusband to have the courage to help you. Is thereanyone else close to you that can. I will pray foryou that you get some help also. A hepc wife

[Guest guest]

Great Diane, remember you always have us for support!!!! Love and Light

Lynne

[Guest guest]

Hi Diane,

This sounds sort of familiar! It took my husband

up until the day before my first injection to finally

admit how scared he had been. Every time I wanted to

talk about having HCV, going on treatment, etc., he

just would change the subject. It got worse and worse

until right before I was ready to start. Then when I

tried to talk about it, with the first sentence out of

my mouth he got up and walked outside. By then it had

become very obvious to me he did NOT want to talk

about it. When he finally came back in that afternoon

I MADE him sit down and talk to me, I told him how it

really hurt that he didn't care. He told me he was

scared and felt helpless. He felt like he should have

been able to 'fix' this for me - you know, like he'd

fix a flat tire for me or something I guess, lol. He

just didn't know what to do, and he was scared, and

not used to these feelings and didn't know how to

handle them, or how to help me. I had to tell him that

he couldn't fix this, and I had to spell out EXACTLY

how he could help me, what I needed from him. I had to

be VERY specific - like I wanted him to take me to my

doctor appointments at least in the beginning, since I

didn't know how I would feel. One of the other things

I told him was that I wanted him to watch this video

the doctor had given me on the treatments and giving

myself injections, and so he did. When the time came

for my first injection he sat right there and talked

me through the whole thing. He was great after that,

and still is. I really think he was having a harder

time coping than I was, and avoiding the whole issue

was how he was coping, up until then. We BOTH felt

better after all this came out.

If you are going through menopause, and now this

too, your mood swings and lack of energy could be

caused by BOTH things. Make sure you also talk to a

doctor about this! You probably need to be on an

antidepressant. Maybe hormones too! Whatever it is,

you (and he) shouldn't just try to live with it, there

is help available.

Take care,

Claudine

__________________________________________________

[Guest guest]

Claudine, I underwent a hysterectomy last September and have been on HRT (estrogen and progesterone) and 1,000 IU's of vitamin ever since. I am at the moment waiting to hear from M.D. Hospital to see if they will accept me as a patient. That is my first choice. If they turn me down I'll try St. Luke's. Both are excellent teaching hospitals, but M.D. is just a hair better. I've been asking everyone I know to pray that I get in.

Diane

If you are going through menopause, and now thistoo, your mood swings and lack of energy could becaused by BOTH things. Make sure you also talk to adoctor about this! You probably need to be on anantidepressant. Maybe hormones too! Whatever it is,you (and he) shouldn't just try to live with it, thereis help available.Take care,Claudine

[Guest guest]

I'm counting on it.

Diane

Re: [ ] It's hitting me!

Great Diane, remember you always have us for support!!!! Love and Light Lynne