Re: Suggestions re Loss of Appetite

[Guest guest]

Jackie thank you for the complement, and I hope that telling my story

can help other people not have such a hard time. I went through the

hard times in my early adult hood when doctors and probably no one

else really paid attention to the problems I had. Now some of those

problems, such as untreated and then under treatment for low thyroid

probably have something to do with my cirrhosis. And when my parents

took me to a crippled children's clinic on the recommendation of our

family doctor and they refused to do anything about the curvature of

my spine because it would take a year out of my life for the surgery

to fix it. Not getting it fixed (the difference in my leg length

causing the curvature) is what started the arthritis and continues to

increase it in my spine today.I would like to go back and tell those

doctors just how much more it actually did take out of my life, one

year at 18 would have been nothing. But they are probably all dead.

I was depressed, spent time in a psychiatric ward, much counseling,

but nothing helped at least until they discovered the thyroid

problem.I know I wasn't the best parent to my children. So, I

understand when people think they just can't take it. I want them to

know there is something out there to help them, some people who care.

People who don't think you are an immature selfish person when you

can't handle the impossible. To all those people suffering from these

things, I give a big hug and pray to God to help them through it. It

isn't me who manages as much as I do, it is his spirit within me which

enables me to accept whatever happens. Just know, I am no saint, I

get frustrated, upset with people who hurt me, have to try hard and it

takes a long time to forgive them when they think they have done

nothing needing forgiveness. And then I get angry at myself because I

can't just forgive and forget as I should. We all have our gifts.

Bobby was able to do something I am not sure I could have done even

when I had more energy. Others here have the gift of being able to

pray for everybody who needs it.Some are excellent caretakers. Me, I

play the piano/organ at church, and pray too, but it seems there just

isn't enough praying because there are so many people who need prayer.

It is overwhelming. Jan

On Tue, Mar 15, 2011 at 1:26 AM, Jackie Ellermann

wrote:

> Jan:  You are a real inspiration to everyone who reads this.  I am blessed to

know you.  Jackie

>

>

>>

>>

>>

>> Subject: Re: Re: Suggestions re Loss of Appetite

>> To: livercirrhosissupport

>> Date: Sunday, March 13, 2011, 2:38 PM

>>

>>

>>

>>

>>

>>

>> I know the stress of being a caretaker, I took care of both of my parents

when

>> they where ill before they passed away. And unfortunately that is not what

this

>> is, because he is not a caretaker in anyway shape or form. We have been

married

>> almost 35 years and the first 10 were horrible, the next 20 so so. But the

last

>> couple have been two people living together leading very different lives.

>> It was not the best but tolerable, then in June 2010 when I ended up in the

>> hospital and found out I was sick everything went straight to H***. He never

>> came and saw me in the hospital though I was there for 5 days and getting

some

>> of the most horrible, confusing, mind boggling information I have ever heard.

No

>> idea I was even sick till I ended up in the hospital, and then to be told

after

>> a battery of tests that you have what we call advanced liver disease, and

what

>> you call end stage liver disease.

>>

>> When I came home and told him he asked me what I wanted him to do about it,

and

>> it has just gone down hill from there. All of my doctors want me to quit

>> working, I have 2 jobs and I babysit my grandkids 2 days a week. But I don't

>> want to be in the house with him because he is retired. I have had 2

wonderful

>> offers of places to live with people I love but unfortunately one of them

would

>> put me 8 hours away from my sons and grandkids, the other 1.5 hours away. so

I

>> would no longer be the involved grandmother that I am and want to be. So if

the

>> choice is to put up with him or move away from my grandkids then he wins.

When I

>> was told to get my affairs in order he would not even discuss burial sites

with

>> me so I bought my own, with my parents and no room for him and I feel bad but

>> the boys will have to figure out what to do with him when the time comes.

>>

>> And just a quick update no there has been no apology of any kind and I do not

>> expect one. But you do have to laugh at the irony of life, he is an

alcoholic,

>> drug user most of is life and I am the one dying from cirrosis!

>>

>> He is out today, I don't know or care were so I am going to curl up with my

dogs

>> and finish a book I am reading and rest up because I am working the next 8

days

>> straight. Hope you all have a good day and thanks for everything, Joan

>>

>> ________________________________

>>

>> To: livercirrhosissupport

>> Sent: Sat, March 12, 2011 4:45:22 PM

>> Subject: Re: Suggestions re Loss of Appetite

>>

>> Joan,

>>

>> Everyone else has said it; I needn't repeat it. Everyone needs an

>> opportunity to vent from time to time, and I know you feel the empathy

>> and even love from group members who have responded. I hope that your

>> husband has apologized for his outrageous statement. Perhaps he, too,

>> was overwhelmed and put his mouth in action before putting his brain in

>> gear. If so, he surely should apologize. If those are his true

>> feelings, I pray that God will show you a way to " die to him, " to get

>> yourself away from this calously selfish a*s!

>>

>> Bill (in middle GA)

>>

>>

>>> >>

>>> >> I am grateful to be a part of this group. My significant other/best

>> friend

>>> has

>>> >>cirrhosis, and I feel like both of our lives have been totally

>> dismantled. I

>>> >>will be forever indebted to the members of this group for the

>> information and

>>> >>words of encouragement I find here.

>>> >>

>>> >>

>>> >> My biggest concern now is his lack of appetite. He is adamant about

>> wanting

>>> to

>>> >>live, but he seems unable to understand that he can't live without

>> food and

>>> >>water. I feel like I have done everything I can. I fluctuate between

>> trying

>>> to

>>> >>keep a strong, positive attitude and feeling absolutely helpless and

>> hopeless.

>>> >>Does anyone have any suggestions for ways I can get more food into

>> my sweetie?

>>> >>At this point, I don't know any more things I can do or words I can

>> say.

>>> >>

>>> >

>>> >

>>> >

>>> >

>>> >

[Guest guest]

Jacke, Jan, Bev I cannot thank you enough for sharing your stories with me. they

help a lot, make me feel so not alone. Since I have found this group I never

feel alone with the cirrosis but at other times I feel really alone with the

rest of it. And not that I am glad I am not the only one stuck in a bad

situation it just gives me strength to know that other people go through this

and worst and still manage to keep their faith ( I am really trying to) and get

through each day. Although the sleeping I am jealous of, haven't slept more than

3 or 4 hours a day or night in I don't remember how long. Fell asleep with my

babies (my dogs) about 11 last night and sure enough woke up at 3 and that was

it for the night. I feel so tired like I could sleep for 12 hours straight and

then I just don't and it gets so frustrating and of course if I wake his

highness up there is hell to pay.

Have a good night and I love you all, Joan

________________________________

To: livercirrhosissupport

Sent: Tue, March 15, 2011 5:34:51 PM

Subject: Re: Re: Suggestions re Loss of Appetite

Jackie thank you for the complement, and I hope that telling my story

can help other people not have such a hard time. I went through the

hard times in my early adult hood when doctors and probably no one

else really paid attention to the problems I had. Now some of those

problems, such as untreated and then under treatment for low thyroid

probably have something to do with my cirrhosis. And when my parents

took me to a crippled children's clinic on the recommendation of our

family doctor and they refused to do anything about the curvature of

my spine because it would take a year out of my life for the surgery

to fix it. Not getting it fixed (the difference in my leg length

causing the curvature) is what started the arthritis and continues to

increase it in my spine today.I would like to go back and tell those

doctors just how much more it actually did take out of my life, one

year at 18 would have been nothing. But they are probably all dead.

I was depressed, spent time in a psychiatric ward, much counseling,

but nothing helped at least until they discovered the thyroid

problem.I know I wasn't the best parent to my children. So, I

understand when people think they just can't take it. I want them to

know there is something out there to help them, some people who care.

People who don't think you are an immature selfish person when you

can't handle the impossible. To all those people suffering from these

things, I give a big hug and pray to God to help them through it. It

isn't me who manages as much as I do, it is his spirit within me which

enables me to accept whatever happens. Just know, I am no saint, I

get frustrated, upset with people who hurt me, have to try hard and it

takes a long time to forgive them when they think they have done

nothing needing forgiveness. And then I get angry at myself because I

can't just forgive and forget as I should. We all have our gifts.

Bobby was able to do something I am not sure I could have done even

when I had more energy. Others here have the gift of being able to

pray for everybody who needs it.Some are excellent caretakers. Me, I

play the piano/organ at church, and pray too, but it seems there just

isn't enough praying because there are so many people who need prayer.

It is overwhelming. Jan

On Tue, Mar 15, 2011 at 1:26 AM, Jackie Ellermann

wrote:

> Jan: You are a real inspiration to everyone who reads this. I am blessed to

>know you. Jackie

>

>

>>

>>

>>

>> Subject: Re: Re: Suggestions re Loss of Appetite

>> To: livercirrhosissupport

>> Date: Sunday, March 13, 2011, 2:38 PM

>>

>>

>>

>>

>>

>>

>> I know the stress of being a caretaker, I took care of both of my parents

when

>> they where ill before they passed away. And unfortunately that is not what

>this

>> is, because he is not a caretaker in anyway shape or form. We have been

>married

>> almost 35 years and the first 10 were horrible, the next 20 so so. But the

>last

>> couple have been two people living together leading very different lives.

>> It was not the best but tolerable, then in June 2010 when I ended up in the

>> hospital and found out I was sick everything went straight to H***. He never

>> came and saw me in the hospital though I was there for 5 days and getting

some

>> of the most horrible, confusing, mind boggling information I have ever heard.

>>No

>> idea I was even sick till I ended up in the hospital, and then to be told

>after

>> a battery of tests that you have what we call advanced liver disease, and

what

>> you call end stage liver disease.

>>

>> When I came home and told him he asked me what I wanted him to do about it,

>and

>> it has just gone down hill from there. All of my doctors want me to quit

>> working, I have 2 jobs and I babysit my grandkids 2 days a week. But I don't

>> want to be in the house with him because he is retired. I have had 2

wonderful

>> offers of places to live with people I love but unfortunately one of them

>would

>> put me 8 hours away from my sons and grandkids, the other 1.5 hours away. so

I

>> would no longer be the involved grandmother that I am and want to be. So if

>the

>> choice is to put up with him or move away from my grandkids then he wins.

When

>>I

>> was told to get my affairs in order he would not even discuss burial sites

>with

>> me so I bought my own, with my parents and no room for him and I feel bad but

>> the boys will have to figure out what to do with him when the time comes.

>>

>> And just a quick update no there has been no apology of any kind and I do not

>> expect one. But you do have to laugh at the irony of life, he is an

alcoholic,

>> drug user most of is life and I am the one dying from cirrosis!

>>

>> He is out today, I don't know or care were so I am going to curl up with my

>>dogs

>> and finish a book I am reading and rest up because I am working the next 8

>days

>> straight. Hope you all have a good day and thanks for everything, Joan

>>

>> ________________________________

>>

>> To: livercirrhosissupport

>> Sent: Sat, March 12, 2011 4:45:22 PM

>> Subject: Re: Suggestions re Loss of Appetite

>>

>> Joan,

>>

>> Everyone else has said it; I needn't repeat it. Everyone needs an

>> opportunity to vent from time to time, and I know you feel the empathy

>> and even love from group members who have responded. I hope that your

>> husband has apologized for his outrageous statement. Perhaps he, too,

>> was overwhelmed and put his mouth in action before putting his brain in

>> gear. If so, he surely should apologize. If those are his true

>> feelings, I pray that God will show you a way to " die to him, " to get

>> yourself away from this calously selfish a*s!

>>

>> Bill (in middle GA)

>>

>>

>>> >>

>>> >> I am grateful to be a part of this group. My significant other/best

>> friend

>>> has

>>> >>cirrhosis, and I feel like both of our lives have been totally

>> dismantled. I

>>> >>will be forever indebted to the members of this group for the

>> information and

>>> >>words of encouragement I find here.

>>> >>

>>> >>

>>> >> My biggest concern now is his lack of appetite. He is adamant about

>> wanting

>>> to

>>> >>live, but he seems unable to understand that he can't live without

>> food and

>>> >>water. I feel like I have done everything I can. I fluctuate between

>> trying

>>> to

>>> >>keep a strong, positive attitude and feeling absolutely helpless and

>> hopeless.

>>> >>Does anyone have any suggestions for ways I can get more food into

>> my sweetie?

>>> >>At this point, I don't know any more things I can do or words I can

>> say.

>>> >>

>>> >

>>> >

>>> >

>>> >

>>> >

[Guest guest]

Joan:  I'm so glad you have those dogs.  They are your " fur babies " and will

give you comfort and unconditional love whenever you need it most.  I think

maybe that's why God provided these pets for us so that we could be comforted in

times of sadness and loneliness.  We have 3 cats and I love them so. You keep

on hanging in there!  All of us on this group care about you so much and you

can come online and talk anytime.  I love talking to people and look forward to

messages for me.  Praying especially for you tonight and also praying that God

will soften your husband's heart.  Miracles do happen, you know.  My is a

walking, talking miracle.  Never never give up!  Love, Jackie 

>>

>>

>>

>> Subject: Re: Re: Suggestions re Loss of Appetite

>> To: livercirrhosissupport

>> Date: Sunday, March 13, 2011, 2:38 PM

>>

>>

>>

>>

>>

>>

>> I know the stress of being a caretaker, I took care of both of my parents

when

>> they where ill before they passed away. And unfortunately that is not what

>this

>> is, because he is not a caretaker in anyway shape or form. We have been

>married

>> almost 35 years and the first 10 were horrible, the next 20 so so. But the

>last

>> couple have been two people living together leading very different lives.

>> It was not the best but tolerable, then in June 2010 when I ended up in the

>> hospital and found out I was sick everything went straight to H***. He never

>> came and saw me in the hospital though I was there for 5 days and getting

some

>> of the most horrible, confusing, mind boggling information I have ever heard.

>>No

>> idea I was even sick till I ended up in the hospital, and then to be told

>after

>> a battery of tests that you have what we call advanced liver disease, and

what

>> you call end stage liver disease.

>>

>> When I came home and told him he asked me what I wanted him to do about it,

>and

>> it has just gone down hill from there. All of my doctors want me to quit

>> working, I have 2 jobs and I babysit my grandkids 2 days a week. But I don't

>> want to be in the house with him because he is retired. I have had 2

wonderful

>> offers of places to live with people I love but unfortunately one of them

>would

>> put me 8 hours away from my sons and grandkids, the other 1.5 hours away. so

I

>> would no longer be the involved grandmother that I am and want to be. So if

>the

>> choice is to put up with him or move away from my grandkids then he wins.

When

>>I

>> was told to get my affairs in order he would not even discuss burial sites

>with

>> me so I bought my own, with my parents and no room for him and I feel bad but

>> the boys will have to figure out what to do with him when the time comes.

>>

>> And just a quick update no there has been no apology of any kind and I do not

>> expect one. But you do have to laugh at the irony of life, he is an

alcoholic,

>> drug user most of is life and I am the one dying from cirrosis!

>>

>> He is out today, I don't know or care were so I am going to curl up with my

>>dogs

>> and finish a book I am reading and rest up because I am working the next 8

>days

>> straight. Hope you all have a good day and thanks for everything, Joan

>>

>> ________________________________

>>

>> To: livercirrhosissupport

>> Sent: Sat, March 12, 2011 4:45:22 PM

>> Subject: Re: Suggestions re Loss of Appetite

>>

>> Joan,

>>

>> Everyone else has said it; I needn't repeat it. Everyone needs an

>> opportunity to vent from time to time, and I know you feel the empathy

>> and even love from group members who have responded. I hope that your

>> husband has apologized for his outrageous statement. Perhaps he, too,

>> was overwhelmed and put his mouth in action before putting his brain in

>> gear. If so, he surely should apologize. If those are his true

>> feelings, I pray that God will show you a way to " die to him, " to get

>> yourself away from this calously selfish a*s!

>>

>> Bill (in middle GA)

>>

>>

>>> >>

>>> >> I am grateful to be a part of this group. My significant other/best

>> friend

>>> has

>>> >>cirrhosis, and I feel like both of our lives have been totally

>> dismantled. I

>>> >>will be forever indebted to the members of this group for the

>> information and

>>> >>words of encouragement I find here.

>>> >>

>>> >>

>>> >> My biggest concern now is his lack of appetite. He is adamant about

>> wanting

>>> to

>>> >>live, but he seems unable to understand that he can't live without

>> food and

>>> >>water. I feel like I have done everything I can. I fluctuate between

>> trying

>>> to

>>> >>keep a strong, positive attitude and feeling absolutely helpless and

>> hopeless.

>>> >>Does anyone have any suggestions for ways I can get more food into

>> my sweetie?

>>> >>At this point, I don't know any more things I can do or words I can

>> say.

>>> >>

>>> >

>>> >

>>> >

>>> >

>>> >

[Guest guest]

Jan:  I am so very thankful to God for your gifts and that He has given you the

strength to use them.  You are a help to others just by the things you do each

day serving your church and being a good person to other people.  I am glad you

shared some of your background story with us.  I was recently feeling bad and

it was an encouragement to me to hear that I'm not the only one who doesn't get

taken seriously.  You know, while was so very sick I kept a journal of

what we were going thru.  Now I am writing a book about the experience.  While

he was sick I was sort of on " auto-pilot " .  I would get up every day and do

whatever had to be done.  The top priority was what to do to make him

comfortable and able to get thru another day.  You can well imagine the

emotional toll that would take on a person.  After the crisis was over and I

was off Zoloft, and I was beginning to write my book I found myself re-living

the crisis.  My husband was

very compassionate about it, but I didn't want him to know just how much I went

thru because I didn't want him to feel guilty.  One day last Dec. I went to our

primary care dr for a routine visit to get my prescriptions renewed for my

meds.  She asked me how was doing and I told her about this ordeal we went

thru in Nov. which turned out to be " much ado about nothing " that he wound up in

the hospital for.  (remember--she asked me about this)  I wanted to tell her

the whole story.  Sometimes it helps to just talk about things, and she wanted

me to give her the " short version " because she had other patients in the waiting

room.  Never mind the last time I was in there to see her I waited 1/2 hour in

the exam room before she came in.  I was gracious to her but left there feeling

very insulted.  It hurt to know that I wasn't listened to.  I had been thru

the most terrible crisis of my life and I think she should have taken the time

to listen

to me.  I was feeling emotionally fragile and I feel like if I need a dr I

want one who will take the time to find out what's going on with the " whole

person. "   My husband has the best drs and gets the best care.  Thank God I am

not sick.  I feel like the care I get is sub-standard and don't know where to

go to get good care.  Just the thought of trying to find a dr makes me wanna

break out in hives.  The last good dr I had was the one who delivered my twins

and he died in 1995.  I miss him so.  Well, anyway, thank you, my friend for

being there to listen to me.  You have helped me tonight.  As always, keeping

you in my prayers.  Love, Jackie

>>

>>

>>

>> Subject: Re: Re: Suggestions re Loss of Appetite

>> To: livercirrhosissupport

>> Date: Sunday, March 13, 2011, 2:38 PM

>>

>>

>>

>>

>>

>>

>> I know the stress of being a caretaker, I took care of both of my parents

when

>> they where ill before they passed away. And unfortunately that is not what

this

>> is, because he is not a caretaker in anyway shape or form. We have been

married

>> almost 35 years and the first 10 were horrible, the next 20 so so. But the

last

>> couple have been two people living together leading very different lives.

>> It was not the best but tolerable, then in June 2010 when I ended up in the

>> hospital and found out I was sick everything went straight to H***. He never

>> came and saw me in the hospital though I was there for 5 days and getting

some

>> of the most horrible, confusing, mind boggling information I have ever heard.

No

>> idea I was even sick till I ended up in the hospital, and then to be told

after

>> a battery of tests that you have what we call advanced liver disease, and

what

>> you call end stage liver disease.

>>

>> When I came home and told him he asked me what I wanted him to do about it,

and

>> it has just gone down hill from there. All of my doctors want me to quit

>> working, I have 2 jobs and I babysit my grandkids 2 days a week. But I don't

>> want to be in the house with him because he is retired. I have had 2

wonderful

>> offers of places to live with people I love but unfortunately one of them

would

>> put me 8 hours away from my sons and grandkids, the other 1.5 hours away. so

I

>> would no longer be the involved grandmother that I am and want to be. So if

the

>> choice is to put up with him or move away from my grandkids then he wins.

When I

>> was told to get my affairs in order he would not even discuss burial sites

with

>> me so I bought my own, with my parents and no room for him and I feel bad but

>> the boys will have to figure out what to do with him when the time comes.

>>

>> And just a quick update no there has been no apology of any kind and I do not

>> expect one. But you do have to laugh at the irony of life, he is an

alcoholic,

>> drug user most of is life and I am the one dying from cirrosis!

>>

>> He is out today, I don't know or care were so I am going to curl up with my

dogs

>> and finish a book I am reading and rest up because I am working the next 8

days

>> straight. Hope you all have a good day and thanks for everything, Joan

>>

>> ________________________________

>>

>> To: livercirrhosissupport

>> Sent: Sat, March 12, 2011 4:45:22 PM

>> Subject: Re: Suggestions re Loss of Appetite

>>

>> Joan,

>>

>> Everyone else has said it; I needn't repeat it. Everyone needs an

>> opportunity to vent from time to time, and I know you feel the empathy

>> and even love from group members who have responded. I hope that your

>> husband has apologized for his outrageous statement. Perhaps he, too,

>> was overwhelmed and put his mouth in action before putting his brain in

>> gear. If so, he surely should apologize. If those are his true

>> feelings, I pray that God will show you a way to " die to him, " to get

>> yourself away from this calously selfish a*s!

>>

>> Bill (in middle GA)

>>

>>

>>> >>

>>> >> I am grateful to be a part of this group. My significant other/best

>> friend

>>> has

>>> >>cirrhosis, and I feel like both of our lives have been totally

>> dismantled. I

>>> >>will be forever indebted to the members of this group for the

>> information and

>>> >>words of encouragement I find here.

>>> >>

>>> >>

>>> >> My biggest concern now is his lack of appetite. He is adamant about

>> wanting

>>> to

>>> >>live, but he seems unable to understand that he can't live without

>> food and

>>> >>water. I feel like I have done everything I can. I fluctuate between

>> trying

>>> to

>>> >>keep a strong, positive attitude and feeling absolutely helpless and

>> hopeless.

>>> >>Does anyone have any suggestions for ways I can get more food into

>> my sweetie?

>>> >>At this point, I don't know any more things I can do or words I can

>> say.

>>> >>

>>> >

>>> >

>>> >

>>> >

>>> >

[Guest guest]

Jackie - I think it is normal to re-experience things after they are

all over. While it is happening, we don't have time to really think

about them,then when it is over, we really get hit by the immensity of

what we have gone through. I understand why you don't want to let

your husband know all about it, make him feel guilty. I think I have

told here about when I injured my back moving a mattress at my

grandfather's house. My grandfather never knew anything of what

followed. Everybody who did know was instructed not to tell him. I

didn't want him to feel guilty for insisting we take it upstairs. I

loved him too much to want to hurt him that way.

Joan, I don't remember if you have said if you have been told what

stage you are at with the cirrhosis. But if you were what we call End

Stage, you must be wonderwoman to do what you are doing, the work,

babysitting and your situation at home. Even in earlier stages I was

having trouble though not all from the cirrhosis. That insurance

thing is really a hard thing. Do you have any arrangements so you can

be at least partially independent? A separate checking account. I am

bringing it up because the day may come when you have to pay for

things your husband obviously won't pay for, such as a cleaning lady,

someone responsible to stay with you if you are able to have a

transplant. Even co pay on medications, things like that. Can you

possibly start saving up for those things now. Maybe one of your

children would be willing to be joint on an account so they could have

access to it if you can't. I have an account with one of my

daughters. And another " checking " accounnt which I only use a debit

card for and a savings account where my check goes automatically every

month. I have online banking so I can transfer money from one to

another, and trustful friends who could withdraw money for me if need

be. Have been a little foggy lately, so surprised I have thought of

these things. But I think it is important that while you have to live

in the same house as your husband, that you can operate independently

from him. Jan

On Tue, Mar 15, 2011 at 8:32 PM, Jackie Ellermann

wrote:

> Jan:  I am so very thankful to God for your gifts and that He has given you

the strength to use them.  You are a help to others just by the things you do

each day serving your church and being a good person to other people.  I am glad

you shared some of your background story with us.  I was recently feeling bad

and it was an encouragement to me to hear that I'm not the only one who doesn't

get taken seriously.  You know, while was so very sick I kept a journal of

what we were going thru.  Now I am writing a book about the experience.  While

he was sick I was sort of on " auto-pilot " .  I would get up every day and do

whatever had to be done.  The top priority was what to do to make him

comfortable and able to get thru another day.  You can well imagine the

emotional toll that would take on a person.  After the crisis was over and I was

off Zoloft, and I was beginning to write my book I found myself re-living the

crisis.  My husband was

>  very compassionate about it, but I didn't want him to know just how much I

went thru because I didn't want him to feel guilty.  One day last Dec. I went to

our primary care dr for a routine visit to get my prescriptions renewed for my

meds.  She asked me how was doing and I told her about this ordeal we went

thru in Nov. which turned out to be " much ado about nothing " that he wound up in

the hospital for.  (remember--she asked me about this)  I wanted to tell her the

whole story.  Sometimes it helps to just talk about things, and she wanted me to

give her the " short version " because she had other patients in the waiting

room.  Never mind the last time I was in there to see her I waited 1/2 hour in

the exam room before she came in.  I was gracious to her but left there feeling

very insulted.  It hurt to know that I wasn't listened to.  I had been thru the

most terrible crisis of my life and I think she should have taken the time to

listen

>  to me.  I was feeling emotionally fragile and I feel like if I need a dr I

want one who will take the time to find out what's going on with the " whole

person. "   My husband has the best drs and gets the best care.  Thank God I am

not sick.  I feel like the care I get is sub-standard and don't know where to go

to get good care.  Just the thought of trying to find a dr makes me wanna break

out in hives.  The last good dr I had was the one who delivered my twins and he

died in 1995.  I miss him so.  Well, anyway, thank you, my friend for being

there to listen to me.  You have helped me tonight.  As always, keeping you in

my prayers.  Love, Jackie

>

>

>>>

>>>

>>>

>>> Subject: Re: Re: Suggestions re Loss of Appetite

>>> To: livercirrhosissupport

>>> Date: Sunday, March 13, 2011, 2:38 PM

>>>

>>>

>>>

>>>

>>>

>>>

>>> I know the stress of being a caretaker, I took care of both of my parents

when

>>> they where ill before they passed away. And unfortunately that is not what

this

>>> is, because he is not a caretaker in anyway shape or form. We have been

married

>>> almost 35 years and the first 10 were horrible, the next 20 so so. But the

last

>>> couple have been two people living together leading very different lives.

>>> It was not the best but tolerable, then in June 2010 when I ended up in the

>>> hospital and found out I was sick everything went straight to H***. He never

>>> came and saw me in the hospital though I was there for 5 days and getting

some

>>> of the most horrible, confusing, mind boggling information I have ever

heard. No

>>> idea I was even sick till I ended up in the hospital, and then to be told

after

>>> a battery of tests that you have what we call advanced liver disease, and

what

>>> you call end stage liver disease.

>>>

>>> When I came home and told him he asked me what I wanted him to do about it,

and

>>> it has just gone down hill from there. All of my doctors want me to quit

>>> working, I have 2 jobs and I babysit my grandkids 2 days a week. But I don't

>>> want to be in the house with him because he is retired. I have had 2

wonderful

>>> offers of places to live with people I love but unfortunately one of them

would

>>> put me 8 hours away from my sons and grandkids, the other 1.5 hours away. so

I

>>> would no longer be the involved grandmother that I am and want to be. So if

the

>>> choice is to put up with him or move away from my grandkids then he wins.

When I

>>> was told to get my affairs in order he would not even discuss burial sites

with

>>> me so I bought my own, with my parents and no room for him and I feel bad

but

>>> the boys will have to figure out what to do with him when the time comes.

>>>

>>> And just a quick update no there has been no apology of any kind and I do

not

>>> expect one. But you do have to laugh at the irony of life, he is an

alcoholic,

>>> drug user most of is life and I am the one dying from cirrosis!

>>>

>>> He is out today, I don't know or care were so I am going to curl up with my

dogs

>>> and finish a book I am reading and rest up because I am working the next 8

days

>>> straight. Hope you all have a good day and thanks for everything, Joan

>>>

>>> ________________________________

>>>

>>> To: livercirrhosissupport

>>> Sent: Sat, March 12, 2011 4:45:22 PM

>>> Subject: Re: Suggestions re Loss of Appetite

>>>

>>> Joan,

>>>

>>> Everyone else has said it; I needn't repeat it. Everyone needs an

>>> opportunity to vent from time to time, and I know you feel the empathy

>>> and even love from group members who have responded. I hope that your

>>> husband has apologized for his outrageous statement. Perhaps he, too,

>>> was overwhelmed and put his mouth in action before putting his brain in

>>> gear. If so, he surely should apologize. If those are his true

>>> feelings, I pray that God will show you a way to " die to him, " to get

>>> yourself away from this calously selfish a*s!

>>>

>>> Bill (in middle GA)

>>>

>>>

>>>> >>

>>>> >> I am grateful to be a part of this group. My significant other/best

>>> friend

>>>> has

>>>> >>cirrhosis, and I feel like both of our lives have been totally

>>> dismantled. I

>>>> >>will be forever indebted to the members of this group for the

>>> information and

>>>> >>words of encouragement I find here.

>>>> >>

>>>> >>

>>>> >> My biggest concern now is his lack of appetite. He is adamant about

>>> wanting

>>>> to

>>>> >>live, but he seems unable to understand that he can't live without

>>> food and

>>>> >>water. I feel like I have done everything I can. I fluctuate between

>>> trying

>>>> to

>>>> >>keep a strong, positive attitude and feeling absolutely helpless and

>>> hopeless.

>>>> >>Does anyone have any suggestions for ways I can get more food into

>>> my sweetie?

>>>> >>At this point, I don't know any more things I can do or words I can

>>> say.

>>>> >>

>>>> >

>>>> >

>>>> >

>>>> >

>>>> >

[Guest guest]

Yes Jan, you and I are probably a lot a like, I am in end stage yes, told to get

my affairs in order, told probably have 2 to maybe 5 years to live. But all of

you who were given the same time frames have beaten it and I will too! Yes I

have some money stashed away, I have a savings account that my husband knows

nothing about but one of my sons does. When he gave me hell for using his money

to buy my burial plot I changed a lot of things without his knowledge. I have

always worked, have always contributed to this family and when he couldn't

because of his drinking or drug abuse I worked 3 jobs to keep a roof over our

sons heads. But now all of a sudden it is his money, well if he only knew. We

had wills made years ago but I have since my diagnosis been to a lawyer and had

a whole new will made. My savings account I am hoping will be to take my 3

grandchildren to Disney World one day but if not then it will pay for my care

when I need it. My family doctor is helping me apply for disability but it is

difficult being married they want to know why I need it when my husband has a

good pension, but also with that good pension comes life time benefits for me

whether we are together or not. I have checked with his company and I will

always have perscription, hospital, dental coverage no matter what happens. So

in some ways I am lucky and if he should pass before me then I will receive his

pension for myself.

I have a very good friend who may be getting a divorce, although I pray they can

work it out. But if not then she and I are talking about getting a place

together and I will sue my husband for support if I have to. I pray every day

for strength and courage and yes selfishly for at least a couple of months if

not more of peace and quiet away from my husband before I go. I feel I have

earned at least that.

Joan

________________________________

To: livercirrhosissupport

Sent: Wed, March 16, 2011 1:41:02 AM

Subject: Re: Re: Suggestions re Loss of Appetite

Jackie - I think it is normal to re-experience things after they are

all over. While it is happening, we don't have time to really think

about them,then when it is over, we really get hit by the immensity of

what we have gone through. I understand why you don't want to let

your husband know all about it, make him feel guilty. I think I have

told here about when I injured my back moving a mattress at my

grandfather's house. My grandfather never knew anything of what

followed. Everybody who did know was instructed not to tell him. I

didn't want him to feel guilty for insisting we take it upstairs. I

loved him too much to want to hurt him that way.

Joan, I don't remember if you have said if you have been told what

stage you are at with the cirrhosis. But if you were what we call End

Stage, you must be wonderwoman to do what you are doing, the work,

babysitting and your situation at home. Even in earlier stages I was

having trouble though not all from the cirrhosis. That insurance

thing is really a hard thing. Do you have any arrangements so you can

be at least partially independent? A separate checking account. I am

bringing it up because the day may come when you have to pay for

things your husband obviously won't pay for, such as a cleaning lady,

someone responsible to stay with you if you are able to have a

transplant. Even co pay on medications, things like that. Can you

possibly start saving up for those things now. Maybe one of your

children would be willing to be joint on an account so they could have

access to it if you can't. I have an account with one of my

daughters. And another " checking " accounnt which I only use a debit

card for and a savings account where my check goes automatically every

month. I have online banking so I can transfer money from one to

another, and trustful friends who could withdraw money for me if need

be. Have been a little foggy lately, so surprised I have thought of

these things. But I think it is important that while you have to live

in the same house as your husband, that you can operate independently

from him. Jan

On Tue, Mar 15, 2011 at 8:32 PM, Jackie Ellermann

wrote:

> Jan: I am so very thankful to God for your gifts and that He has given you

the

>strength to use them. You are a help to others just by the things you do each

>day serving your church and being a good person to other people. I am glad you

>shared some of your background story with us. I was recently feeling bad and

it

>was an encouragement to me to hear that I'm not the only one who doesn't get

>taken seriously. You know, while was so very sick I kept a journal of

what

>we were going thru. Now I am writing a book about the experience. While he

was

>sick I was sort of on " auto-pilot " . I would get up every day and do whatever

>had to be done. The top priority was what to do to make him comfortable and

>able to get thru another day. You can well imagine the emotional toll that

>would take on a person. After the crisis was over and I was off Zoloft, and I

>was beginning to write my book I found myself re-living the crisis. My husband

>was

> very compassionate about it, but I didn't want him to know just how much I

>went thru because I didn't want him to feel guilty. One day last Dec. I went

to

>our primary care dr for a routine visit to get my prescriptions renewed for my

>meds. She asked me how was doing and I told her about this ordeal we went

>thru in Nov. which turned out to be " much ado about nothing " that he wound up

in

>the hospital for. (remember--she asked me about this) I wanted to tell her

the

>whole story. Sometimes it helps to just talk about things, and she wanted me

to

>give her the " short version " because she had other patients in the waiting

>room. Never mind the last time I was in there to see her I waited 1/2 hour in

>the exam room before she came in. I was gracious to her but left there feeling

>very insulted. It hurt to know that I wasn't listened to. I had been thru the

>most terrible crisis of my life and I think she should have taken the time to

>listen

> to me. I was feeling emotionally fragile and I feel like if I need a dr I

>want one who will take the time to find out what's going on with the " whole

>person. " My husband has the best drs and gets the best care. Thank God I am

>not sick. I feel like the care I get is sub-standard and don't know where to

go

>to get good care. Just the thought of trying to find a dr makes me wanna break

>out in hives. The last good dr I had was the one who delivered my twins and he

>died in 1995. I miss him so. Well, anyway, thank you, my friend for being

>there to listen to me. You have helped me tonight. As always, keeping you in

>my prayers. Love, Jackie

>

>

>>>

>>>

>>>

>>> Subject: Re: Re: Suggestions re Loss of Appetite

>>> To: livercirrhosissupport

>>> Date: Sunday, March 13, 2011, 2:38 PM

>>>

>>>

>>>

>>>

>>>

>>>

>>> I know the stress of being a caretaker, I took care of both of my parents

>when

>>> they where ill before they passed away. And unfortunately that is not what

>>this

>>> is, because he is not a caretaker in anyway shape or form. We have been

>>married

>>> almost 35 years and the first 10 were horrible, the next 20 so so. But the

>>last

>>> couple have been two people living together leading very different lives.

>>> It was not the best but tolerable, then in June 2010 when I ended up in the

>>> hospital and found out I was sick everything went straight to H***. He never

>>> came and saw me in the hospital though I was there for 5 days and getting

>some

>>> of the most horrible, confusing, mind boggling information I have ever

heard.

>>>No

>>> idea I was even sick till I ended up in the hospital, and then to be told

>>after

>>> a battery of tests that you have what we call advanced liver disease, and

>what

>>> you call end stage liver disease.

>>>

>>> When I came home and told him he asked me what I wanted him to do about it,

>>and

>>> it has just gone down hill from there. All of my doctors want me to quit

>>> working, I have 2 jobs and I babysit my grandkids 2 days a week. But I don't

>>> want to be in the house with him because he is retired. I have had 2

>wonderful

>>> offers of places to live with people I love but unfortunately one of them

>>would

>>> put me 8 hours away from my sons and grandkids, the other 1.5 hours away. so

>I

>>> would no longer be the involved grandmother that I am and want to be. So if

>>the

>>> choice is to put up with him or move away from my grandkids then he wins.

When

>>>I

>>> was told to get my affairs in order he would not even discuss burial sites

>>with

>>> me so I bought my own, with my parents and no room for him and I feel bad

but

>>> the boys will have to figure out what to do with him when the time comes.

>>>

>>> And just a quick update no there has been no apology of any kind and I do

not

>>> expect one. But you do have to laugh at the irony of life, he is an

>alcoholic,

>>> drug user most of is life and I am the one dying from cirrosis!

>>>

>>> He is out today, I don't know or care were so I am going to curl up with my

>>>dogs

>>> and finish a book I am reading and rest up because I am working the next 8

>>days

>>> straight. Hope you all have a good day and thanks for everything, Joan

>>>

>>> ________________________________

>>>

>>> To: livercirrhosissupport

>>> Sent: Sat, March 12, 2011 4:45:22 PM

>>> Subject: Re: Suggestions re Loss of Appetite

>>>

>>> Joan,

>>>

>>> Everyone else has said it; I needn't repeat it. Everyone needs an

>>> opportunity to vent from time to time, and I know you feel the empathy

>>> and even love from group members who have responded. I hope that your

>>> husband has apologized for his outrageous statement. Perhaps he, too,

>>> was overwhelmed and put his mouth in action before putting his brain in

>>> gear. If so, he surely should apologize. If those are his true

>>> feelings, I pray that God will show you a way to " die to him, " to get

>>> yourself away from this calously selfish a*s!

>>>

>>> Bill (in middle GA)

>>>

>>>

>>>> >>

>>>> >> I am grateful to be a part of this group. My significant other/best

>>> friend

>>>> has

>>>> >>cirrhosis, and I feel like both of our lives have been totally

>>> dismantled. I

>>>> >>will be forever indebted to the members of this group for the

>>> information and

>>>> >>words of encouragement I find here.

>>>> >>

>>>> >>

>>>> >> My biggest concern now is his lack of appetite. He is adamant about

>>> wanting

>>>> to

>>>> >>live, but he seems unable to understand that he can't live without

>>> food and

>>>> >>water. I feel like I have done everything I can. I fluctuate between

>>> trying

>>>> to

>>>> >>keep a strong, positive attitude and feeling absolutely helpless and

>>> hopeless.

>>>> >>Does anyone have any suggestions for ways I can get more food into

>>> my sweetie?

>>>> >>At this point, I don't know any more things I can do or words I can

>>> say.

>>>> >>

>>>> >

>>>> >

>>>> >

>>>> >

>>>> >

[Guest guest]

joan, your story is mine all the way.my husband is still working because if he

retires we loss all benefits.he makes really good money.but i filed for

disablity when i was  told i needed a transplant  i had no trouble getting it

with back pay.they never even mentioned my husband that should not matter

because this is money you worked for all thoughs years.good luck hope everything

will work out for you.

 

bev,tx

>>>

>>>

>>>

>>> Subject: Re: Re: Suggestions re Loss of Appetite

>>> To: livercirrhosissupport

>>> Date: Sunday, March 13, 2011, 2:38 PM

>>>

>>>

>>>

>>>

>>>

>>>

>>> I know the stress of being a caretaker, I took care of both of my parents

>when

>>> they where ill before they passed away. And unfortunately that is not what

>>this

>>> is, because he is not a caretaker in anyway shape or form. We have been

>>married

>>> almost 35 years and the first 10 were horrible, the next 20 so so. But the

>>last

>>> couple have been two people living together leading very different lives.

>>> It was not the best but tolerable, then in June 2010 when I ended up in the

>>> hospital and found out I was sick everything went straight to H***. He never

>>> came and saw me in the hospital though I was there for 5 days and getting

>some

>>> of the most horrible, confusing, mind boggling information I have ever

heard.

>>>No

>>> idea I was even sick till I ended up in the hospital, and then to be told

>>after

>>> a battery of tests that you have what we call advanced liver disease, and

>what

>>> you call end stage liver disease.

>>>

>>> When I came home and told him he asked me what I wanted him to do about it,

>>and

>>> it has just gone down hill from there. All of my doctors want me to quit

>>> working, I have 2 jobs and I babysit my grandkids 2 days a week. But I don't

>>> want to be in the house with him because he is retired. I have had 2

>wonderful

>>> offers of places to live with people I love but unfortunately one of them

>>would

>>> put me 8 hours away from my sons and grandkids, the other 1.5 hours away. so

>I

>>> would no longer be the involved grandmother that I am and want to be. So if

>>the

>>> choice is to put up with him or move away from my grandkids then he wins.

When

>>>I

>>> was told to get my affairs in order he would not even discuss burial sites

>>with

>>> me so I bought my own, with my parents and no room for him and I feel bad

but

>>> the boys will have to figure out what to do with him when the time comes.

>>>

>>> And just a quick update no there has been no apology of any kind and I do

not

>>> expect one. But you do have to laugh at the irony of life, he is an

>alcoholic,

>>> drug user most of is life and I am the one dying from cirrosis!

>>>

>>> He is out today, I don't know or care were so I am going to curl up with my

>>>dogs

>>> and finish a book I am reading and rest up because I am working the next 8

>>days

>>> straight. Hope you all have a good day and thanks for everything, Joan

>>>

>>> ________________________________

>>>

>>> To: livercirrhosissupport

>>> Sent: Sat, March 12, 2011 4:45:22 PM

>>> Subject: Re: Suggestions re Loss of Appetite

>>>

>>> Joan,

>>>

>>> Everyone else has said it; I needn't repeat it. Everyone needs an

>>> opportunity to vent from time to time, and I know you feel the empathy

>>> and even love from group members who have responded. I hope that your

>>> husband has apologized for his outrageous statement. Perhaps he, too,

>>> was overwhelmed and put his mouth in action before putting his brain in

>>> gear. If so, he surely should apologize. If those are his true

>>> feelings, I pray that God will show you a way to " die to him, " to get

>>> yourself away from this calously selfish a*s!

>>>

>>> Bill (in middle GA)

>>>

>>>

>>>> >>

>>>> >> I am grateful to be a part of this group. My significant other/best

>>> friend

>>>> has

>>>> >>cirrhosis, and I feel like both of our lives have been totally

>>> dismantled. I

>>>> >>will be forever indebted to the members of this group for the

>>> information and

>>>> >>words of encouragement I find here.

>>>> >>

>>>> >>

>>>> >> My biggest concern now is his lack of appetite. He is adamant about

>>> wanting

>>>> to

>>>> >>live, but he seems unable to understand that he can't live without

>>> food and

>>>> >>water. I feel like I have done everything I can. I fluctuate between

>>> trying

>>>> to

>>>> >>keep a strong, positive attitude and feeling absolutely helpless and

>>> hopeless.

>>>> >>Does anyone have any suggestions for ways I can get more food into

>>> my sweetie?

>>>> >>At this point, I don't know any more things I can do or words I can

>>> say.

>>>> >>

>>>> >

>>>> >

>>>> >

>>>> >

>>>> >

[Guest guest]

Joan, you deserve all the good there is in the world. How long before

you can retire if you don't get disability. I have to apply for

disability again said I was going to more than a year ago, but just

haven't gotten it done. It takes energy I don't have, or need for

other things. Guess it would be easier to get on it if I hadn't been

turned down before, don't qualify for SS disability because I waited

too long, so amount wouldn't really change my situation, just have

more to help my kids out, give myself a few options too, like easier

to pay for new computer when old one goes.

When you get down, teed off like you did a few days ago post it here,

that is one of the functions of this site. We support each other

whether it is giving information of lending an ear. Jan

> Yes Jan, you and I are probably a lot a like, I am in end stage yes, told to

get

> my affairs in order, told probably have 2 to maybe 5 years to live. But all of

> you who were given the same time frames have beaten it and I will too! Yes I

> have some money stashed away, I have a savings account that my husband knows

> nothing about but one of my sons does. When he gave me hell for using his

money

> to buy my burial plot I changed a lot of things without his knowledge. I have

> always worked, have always contributed to this family and when he couldn't

> because of his drinking or drug abuse I worked 3 jobs to keep a roof over our

> sons heads. But now all of a sudden it is his money, well if he only knew. We

> had wills made years ago but I have since my diagnosis been to a lawyer and

had

> a whole new will made. My savings account I am hoping will be to take my 3

> grandchildren to Disney World one day but if not then it will pay for my care

> when I need it. My family doctor is helping me apply for disability but it is

> difficult being married they want to know why I need it when my husband has a

> good pension, but also with that good pension comes life time benefits for me

> whether we are together or not. I have checked with his company and I will

> always have perscription, hospital, dental coverage no matter what happens. So

> in some ways I am lucky and if he should pass before me then I will receive

his

> pension for myself.

>

> I have a very good friend who may be getting a divorce, although I pray they

can

> work it out. But if not then she and I are talking about getting a place

> together and I will sue my husband for support if I have to. I pray every day

> for strength and courage and yes selfishly for at least a couple of months if

> not more of peace and quiet away from my husband before I go. I feel I have

> earned at least that.

> Joan

>

>

>

>

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Wed, March 16, 2011 1:41:02 AM

> Subject: Re: Re: Suggestions re Loss of Appetite

>

>

> Jackie - I think it is normal to re-experience things after they are

> all over.  While it is happening, we don't have time to really think

> about them,then when it is over, we really get hit by the immensity of

> what we have gone through.  I understand why you don't want to let

> your husband know all about it, make him feel guilty.  I think I have

> told here about when I injured my back moving a mattress at my

> grandfather's house.  My grandfather never knew anything of what

> followed.  Everybody who did know was instructed not to tell him.  I

> didn't want him to feel guilty for insisting we take it upstairs.  I

> loved him too much to want to hurt him that way.

>

> Joan, I don't remember if you have said if you have been told what

> stage you are at with the cirrhosis.  But if you were what we call End

> Stage, you must be wonderwoman to do what you are doing, the work,

> babysitting and your situation at home.  Even in earlier stages I was

> having trouble though not all from the cirrhosis.  That insurance

> thing is really a hard thing.  Do you have any arrangements so you can

> be at least partially independent?  A separate checking account.  I am

> bringing it up because the day may come when you have to pay for

> things your husband obviously won't pay for, such as a cleaning lady,

> someone responsible to stay with you if you are able to have a

> transplant.  Even co pay on medications, things like that.  Can you

> possibly start saving up for those things now.  Maybe one of your

> children would be willing to be joint on an account so they could have

> access to it if you can't.  I have an account with one of  my

> daughters. And another " checking " accounnt which I only use a debit

> card for and a savings account where my check goes automatically every

> month.  I have online banking so I can transfer money from one to

> another, and trustful friends who could withdraw money for me if need

> be.  Have been a little foggy lately, so surprised I have thought of

> these things.  But I think it is important that while you have to live

> in the same house as your husband, that you can operate independently

> from him.  Jan

>

> On Tue, Mar 15, 2011 at 8:32 PM, Jackie Ellermann

> wrote:

>> Jan:  I am so very thankful to God for your gifts and that He has given you

the

>>strength to use them.  You are a help to others just by the things you do each

>>day serving your church and being a good person to other people.  I am glad

you

>>shared some of your background story with us.  I was recently feeling bad and

it

>>was an encouragement to me to hear that I'm not the only one who doesn't get

>>taken seriously.  You know, while was so very sick I kept a journal of

what

>>we were going thru.  Now I am writing a book about the experience.  While he

was

>>sick I was sort of on " auto-pilot " .  I would get up every day and do whatever

>>had to be done.  The top priority was what to do to make him comfortable and

>>able to get thru another day.  You can well imagine the emotional toll that

>>would take on a person.  After the crisis was over and I was off Zoloft, and I

>>was beginning to write my book I found myself re-living the crisis.  My

husband

>>was

>>  very compassionate about it, but I didn't want him to know just how much I

>>went thru because I didn't want him to feel guilty.  One day last Dec. I went

to

>>our primary care dr for a routine visit to get my prescriptions renewed for my

>>meds.  She asked me how was doing and I told her about this ordeal we

went

>>thru in Nov. which turned out to be " much ado about nothing " that he wound up

in

>>the hospital for.  (remember--she asked me about this)  I wanted to tell her

the

>>whole story.  Sometimes it helps to just talk about things, and she wanted me

to

>>give her the " short version " because she had other patients in the waiting

>>room.  Never mind the last time I was in there to see her I waited 1/2 hour in

>>the exam room before she came in.  I was gracious to her but left there

feeling

>>very insulted.  It hurt to know that I wasn't listened to.  I had been thru

the

>>most terrible crisis of my life and I think she should have taken the time to

>>listen

>>  to me.  I was feeling emotionally fragile and I feel like if I need a dr I

>>want one who will take the time to find out what's going on with the " whole

>>person. "  My husband has the best drs and gets the best care.  Thank God I am

>>not sick.  I feel like the care I get is sub-standard and don't know where to

go

>>to get good care.  Just the thought of trying to find a dr makes me wanna

break

>>out in hives.  The last good dr I had was the one who delivered my twins and

he

>>died in 1995.  I miss him so.  Well, anyway, thank you, my friend for being

>>there to listen to me.  You have helped me tonight.  As always, keeping you in

>>my prayers.  Love, Jackie

>>

>>

>>>>

>>>>

>>>>

>>>> Subject: Re: Re: Suggestions re Loss of Appetite

>>>> To: livercirrhosissupport

>>>> Date: Sunday, March 13, 2011, 2:38 PM

>>>>

>>>>

>>>>

>>>>

>>>>

>>>>

>>>> I know the stress of being a caretaker, I took care of both of my parents

>>when

>>>> they where ill before they passed away. And unfortunately that is not what

>>>this

>>>> is, because he is not a caretaker in anyway shape or form. We have been

>>>married

>>>> almost 35 years and the first 10 were horrible, the next 20 so so. But the

>>>last

>>>> couple have been two people living together leading very different lives.

>>>> It was not the best but tolerable, then in June 2010 when I ended up in the

>>>> hospital and found out I was sick everything went straight to H***. He

never

>>>> came and saw me in the hospital though I was there for 5 days and getting

>>some

>>>> of the most horrible, confusing, mind boggling information I have ever

heard.

>>>>No

>>>> idea I was even sick till I ended up in the hospital, and then to be told

>>>after

>>>> a battery of tests that you have what we call advanced liver disease, and

>>what

>>>> you call end stage liver disease.

>>>>

>>>> When I came home and told him he asked me what I wanted him to do about it,

>>>and

>>>> it has just gone down hill from there. All of my doctors want me to quit

>>>> working, I have 2 jobs and I babysit my grandkids 2 days a week. But I

don't

>>>> want to be in the house with him because he is retired. I have had 2

>>wonderful

>>>> offers of places to live with people I love but unfortunately one of them

>>>would

>>>> put me 8 hours away from my sons and grandkids, the other 1.5 hours away.

so

>>I

>>>> would no longer be the involved grandmother that I am and want to be. So if

>>>the

>>>> choice is to put up with him or move away from my grandkids then he wins.

When

>>>>I

>>>> was told to get my affairs in order he would not even discuss burial sites

>>>with

>>>> me so I bought my own, with my parents and no room for him and I feel bad

> but

>>>> the boys will have to figure out what to do with him when the time comes.

>>>>

>>>> And just a quick update no there has been no apology of any kind and I do

> not

>>>> expect one. But you do have to laugh at the irony of life, he is an

>>alcoholic,

>>>> drug user most of is life and I am the one dying from cirrosis!

>>>>

>>>> He is out today, I don't know or care were so I am going to curl up with my

>>>>dogs

>>>> and finish a book I am reading and rest up because I am working the next 8

>>>days

>>>> straight. Hope you all have a good day and thanks for everything, Joan

>>>>

>>>> ________________________________

>>>>

>>>> To: livercirrhosissupport

>>>> Sent: Sat, March 12, 2011 4:45:22 PM

>>>> Subject: Re: Suggestions re Loss of Appetite

>>>>

>>>> Joan,

>>>>

>>>> Everyone else has said it; I needn't repeat it. Everyone needs an

>>>> opportunity to vent from time to time, and I know you feel the empathy

>>>> and even love from group members who have responded. I hope that your

>>>> husband has apologized for his outrageous statement. Perhaps he, too,

>>>> was overwhelmed and put his mouth in action before putting his brain in

>>>> gear. If so, he surely should apologize. If those are his true

>>>> feelings, I pray that God will show you a way to " die to him, " to get

>>>> yourself away from this calously selfish a*s!

>>>>

>>>> Bill (in middle GA)

>>>>

>>>>

>>>>> >>

>>>>> >> I am grateful to be a part of this group. My significant other/best

>>>> friend

>>>>> has

>>>>> >>cirrhosis, and I feel like both of our lives have been totally

>>>> dismantled. I

>>>>> >>will be forever indebted to the members of this group for the

>>>> information and

>>>>> >>words of encouragement I find here.

>>>>> >>

>>>>> >>

>>>>> >> My biggest concern now is his lack of appetite. He is adamant about

>>>> wanting

>>>>> to

>>>>> >>live, but he seems unable to understand that he can't live without

>>>> food and

>>>>> >>water. I feel like I have done everything I can. I fluctuate between

>>>> trying

>>>>> to

>>>>> >>keep a strong, positive attitude and feeling absolutely helpless and

>>>> hopeless.

>>>>> >>Does anyone have any suggestions for ways I can get more food into

>>>> my sweetie?

>>>>> >>At this point, I don't know any more things I can do or words I can

>>>> say.

>>>>> >>

>>>>> >

>>>>> >

>>>>> >

>>>>> >

>>>>> >