RE:

February 8, 2009

,

I don't have liver disease, I was my husband's caregiver until he passed on Jan.

26. I do, however, have other health problems. I have heart disease, diabetes,

fibromyalgia, gastroparesis with a gastri pacemaker and depression. My husband

went the last 12-18 months of his life, never leaving the house other than for a

rare doctor's visit and trips to the hospital. I usually get out about 1-2

times weekly in the colder months, if I'm able. In the warmer months, I try to

get out at least every other day. Now, having said that, I do go outside every

day to take care of my dogs and get the mail. I have always been the type that

just would not sit down and quit. Even before I got my gastric pacemaker and I

was vomiting over 20 times a day, I MADE a way to go out to run my own errands.

Even if it meant pulling over on the side of the road to throw up several times

during the outing. Since my husband's death, I have been out on trips to town

or to family or friends houses at least every other day. I think staying

indoors all the time contributes to my depression and I refuse to do that. I

sometimes make a trip into town just to run by and get a milkshake just so I

have a reason to get out. I just don't want to give in to my illnesses or to

the temptation to become a hermit now that my husband has passed. Now, all that

is just my way of looking at my own life. All of us are not alike and thank the

Lord for that! My way works for me, I'm by no means saying it is right for

you. Also, the more advanced your liver disease gets, the less able you will be

to get out. You do need to get out of bed every day that you can possibly drag

yourself out. Even if it's just to go from the bed to the sofa or a comfortable

chair, it's important to say to yourself " I will not lie in this bed and die " .

Again, that's just my opinion hun. I'm praying for you . I cannot imagine

what it

must be like to be you and live under your circumstances. Make the best

choices you can for your own health and well being. God bless you!

Warm hugs..............

Diane

________________________________

To: livercirrhosissupport

Sent: Sunday, February 8, 2009 6:15:13 PM

Subject: Re:

Abijann,

How do folks keep finding a reason to get out of bed each day. I can go days at

a time and don't go out. Is anyone else out their haveing to be there own

caretaker??

From: abijann <no_reply@yahoogroup s.com>

Subject:

To: livercirrhosissuppo rtyahoogroups (DOT) com

Date: Saturday, February 7, 2009, 5:07 PM

Welcome to this group. I wish you had at least someone there that

could be with you now. It sounds like you have gone through quite

a lot. If you have any questions at all, please ask us.

All questions are very important. I tell others that their

questions might give an answer to those who just read the

posts here and doesn't post themselves. You never know who

else you might be helping. I'm glad you found us and I hope

you enjoy being here.

February 8, 2009

, what you are feeling is normal and I'm sure we've all had those

days..or weeks. It was really helpful for me to talk to the transplant

psychologist (sp?). I was started on wellbutrin and in like two weeks

I started taking care of me again. I know it's gross but I wouldn't

shower for three days at a time, I never returned phone calls or

emails, my vision was so focused on everything that was wrong with me.

I know anti-depressants aren't for everyone and I never felt one work

on me until wellbutrin. The other suggestion and more important would

be to give it to God, or whatever your higher power may be. You might

be alone in your apartment but you've got my support and hope with

you. If I can climb up out of the dark than anyone can

And.. I'm not sure about this but I think that you are able to have

palliative care or hospice even if you are on the list. You probably

need a doctor to refer you and/or you might need to be more sick. It

couldn't hurt to look into it and it would provide you with a support

system. Just a thought.

>

> From: abijann <no_reply >

> Subject:

> To: livercirrhosissupport

> Date: Saturday, February 7, 2009, 5:07 PM

>

> Welcome to this group. I wish you had at least someone there that

> could be with you now. It sounds like you have gone through quite

> a lot. If you have any questions at all, please ask us.

> All questions are very important. I tell others that their

> questions might give an answer to those who just read the

> posts here and doesn't post themselves. You never know who

> else you might be helping. I'm glad you found us and I hope

> you enjoy being here.

>

February 8, 2009

, do you own a good computer? Is it new, and fast? I am stuck in one place

most days right here on my couch because the more I move around, the more it

wakes up my pain. My pills make the pain go to sleep, but I have to stay still

for them to work the best. Of course there are things to be done, and this is

why my doctor is fleible on how to dose the medication. On a Saturday, I stay

still and take one or two fewer pills, untill the shopping, then I take an extra

pill, and cat box duty, which is usually around 2:00 am Sunday, and I take an

extra pill in order to do that. I have found a bunch of things to do on the

computer, and I will write a post in a few minutes on what they are. Love, Bobby

Sent via BlackBerry from T-Mobile

To: livercirrhosissupport

Date: Saturday, February 7, 2009, 5:07 PM

Welcome to this group. I wish you had at least someone there that

could be with you now. It sounds like you have gone through quite

a lot. If you have any questions at all, please ask us.

All questions are very important. I tell others that their

questions might give an answer to those who just read the

posts here and doesn't post themselves. You never know who

else you might be helping. I'm glad you found us and I hope

you enjoy being here.

February 8, 2009

My gosh,Abijann. Your post was amazing. It made ME feel better and I wouldn't

say I'm really depressed right now., but even us caregivers who are doing okay

right now can benefit from your words.... you're so right about loving yourself

and taking care of yourself. .Once again, I'm going to keep it for future

reference. You are so wise. I just love you! It's like you know just what to

say.

Love,Jill

We don't remember days, we remember moments.

Life is not measured by the breaths we take,but by the moments that take our

breath away.

From: abijann <no_reply >

Subject:

To: livercirrhosissupport

Date: Sunday, February 8, 2009, 10:06 PM

Did you ever notice that when someone finds out someone is sick

with a serious condition... all of a sudden they don't know what to

say to that person. Or, if someone sees someone depressed, they

don't approach them as often. It is a normal response that people

only want to be around the healthy and well.

Being depressed yourself can have a similar effect, especially if

you think other people don't understand what you are going through,

if they never experienced what you are going through, or they

don't hear what you say to them, or they say something to make you

feel less important or appreciated.

There are tons of caregivers out there who are totally on their

own taking care of their loved ones. They don't know who to

turn to for help or whether they will have to pay for someone's

elses help. They can feel trapped or isolated.

People who are sick don't always feel like being around others.

Having others there can, at times, wear them out. When someone

comes to your home...you tend to make them the center of attention

and you offer them drinks and listen to all they say. Some

patients feel that it is their obligation to entertain and

make the person visiting them feel welcome and comfortable even

if they do not feel well. And some patients don't like to

be made the center of attention by having others who ask

them why they didn't see such and such a doctor and why they

don't try different things that others suggest.

It isn't bad that you don't go outside your home. What is

bad is if you don't want to leave your home.

If you start to look at the beauty of creation and think

about that...it will lift your spirit. Going outside and

looking at the sky at night with the stars, make me realize

how very small I am in comparison and how my problem seem

to become less and almost meaningless. Doing things that

comfort yourself is good also...like preparing a bath with

only a candle lit in the bathroom, or trying a new tea you

never drank before, or warming a towel to wrap up in

after your bath.

You have to realize how very special you are. You have

to sit down and say and look at all you do for others in

your life and maybe now it is your turn to be treated special.

It takes loving yourself. They say you cannot love others,

unless you love yourself first. Love flows from you to

others around you and that is what people will remember you

by. It means being yourself and opening up your heart to

them...it means being their for them and letting them be

there for you. There is a time when we have to take care of

others, but there is also a time when others will have to

take care of us. This gives us a chance to learn compassion

and understanding, it also gives us a chance to experience

others doing for us in our times of need. Experience

life and learn how to enjoy it. Live each and everyday...

forget about the past and don't be afraid of the future that

you cannot do anything about. Live in the here and now.

When you wake in the morning...try to add some things to

your day where you can do something special just for

yourself.... no matter how minor it is. You don't have

to run around to do that. In the olden days, most people

only had their homes to stay in...they didn't have the

modern transportations we have now a days to run all over

the place. They had to learn how to entertain themselves

without all the modern TV, computers, etc we have today.

Depression is very hard to come out of. Life at times

can seem torturous... but, it doesn't have to be that way.

I wish I could give you a hug, cause I know you are going

through so very much.

February 9, 2009

I am replying to my own post to give some examples of how I deal with this house

bound situation. I used to be a gardener for the city and county of Denver. I

worked outside every day, 8 hours a day. I a musician, and used to play drums in

a country band. I am a big game hunter and fisherman, and used to camp in our 16

foot Cheyenne lodge in the high country of northern Colorado, near the small

towb of Oak Creek. We set up our bigger teepee poles permanantly on my best

friend's private land, 5,000 acres surrounded by 100 square miles of national

forest and BLM land. We were active in every way, spending every weekend in the

summer away, fishing or camping or attending a mountain man rondevoux. Now we

are both out of work, in the house 24 hours a day. 7 days a week. Tommorrow I go

to the doctor to get my eye looked at. I have some kind of infection, and

jaundice. I am scared. NOw, about how I spend my time, I watch lots of movies at

HULU . Com. It is free internet movies, and tv. I also use a program called " the

gimp " to make graphics for my blog, billybobswildride. The link for my blog is

in the link section.

The beating heart on my blog, and the spinning wong baker pain scale was made

with the gimp. You can easily make all kinds of animated gif images with this

program, and it is totally 100 percent free, because it is open source.

I also use a scylpting program to digitally. Sculpt in 3D. Z brush is very fun,

but expensive, at $600 dollars. I bought it before I got so sick, in hopes of

making a career in animation. I still hope to do this. Then there is a program

called " miro " which is a free web browser for videos.

There is a free program called google sketch up- you can use to sculpt 3D

buildings for Google earth. I built our house, and a radio tower, and a Greek

Orthodox cathedral, and my moms house and uploaded them to the google earth 3D

warehouse. I am " denver gardener " in the 3D warehouse.

If you open google earth on your computer, and scroll down to the Denver area,

you will see a radio tower located south of downtown. I grew up in a tiny house

500 feet west of this tower. I built it in google sketch up, and just found out

now that my model was accepted into the world 3D layer of google earth. This

means that it will exist as long as there is a google.

If you use sketch up, you can learn to do 3D modeling for Google earth. Keep in

mind that school children are responsible for the vast majority of the 3D

models.

Then, you can view your creation in google earth. I fly in the flight simulater

on google earth every day. I have flown in the mountains along the Canadian

border near Washington state, and even. In the deep ouit back of Austrailia. I

fly in Africa, and all over Europe. Just install google earth, and open the

program, scroll down to a location you are familiar with and select from the

tools drop down menu, and you can select either an f16 fighter, or a prop plane.

It is sometimes breath taking to fly over the Colorado rocky mountains in this

flight simulater, because is have such a vivid imagination, and my

encephalopathy does all the rest.

For those who are really bored, you can join second life. It is a paralelle

universe located in cyberspace. You sign up, and then you create a persona and

live whatever kind of life you wish there. They even have their own money, which

is interchangeable with US dollars, and you can earn money there also, and even

work at a " job " .

I hope someone will be able to find something to do using this information!

Love, Bobby A.

Sent via BlackBerry from T-Mobile

To: livercirrhosissupport

Date: Saturday, February 7, 2009, 5:07 PM

Welcome to this group. I wish you had at least someone there that

could be with you now. It sounds like you have gone through quite

a lot. If you have any questions at all, please ask us.

All questions are very important. I tell others that their

questions might give an answer to those who just read the

posts here and doesn't post themselves. You never know who

else you might be helping. I'm glad you found us and I hope

you enjoy being here.

February 9, 2009

Very well put Abijan. That was special.

Roni

> Did you ever notice that when someone finds out someone is sick

> with a serious condition...all of a sudden they don't know what to

> say to that person. Or, if someone sees someone depressed, they

> don't approach them as often. It is a normal response that people

> only want to be around the healthy and well.

>

> Being depressed yourself can have a similar effect, especially if

> you think other people don't understand what you are going through,

> if they never experienced what you are going through, or they

> don't hear what you say to them, or they say something to make you

> feel less important or appreciated.

>

> There are tons of caregivers out there who are totally on their

> own taking care of their loved ones. They don't know who to

> turn to for help or whether they will have to pay for someone's

> elses help. They can feel trapped or isolated.

>

> People who are sick don't always feel like being around others.

> Having others there can, at times, wear them out. When someone

> comes to your home...you tend to make them the center of attention

> and you offer them drinks and listen to all they say. Some

> patients feel that it is their obligation to entertain and

> make the person visiting them feel welcome and comfortable even

> if they do not feel well. And some patients don't like to

> be made the center of attention by having others who ask

> them why they didn't see such and such a doctor and why they

> don't try different things that others suggest.

>

> It isn't bad that you don't go outside your home. What is

> bad is if you don't want to leave your home.

> If you start to look at the beauty of creation and think

> about that...it will lift your spirit. Going outside and

> looking at the sky at night with the stars, make me realize

> how very small I am in comparison and how my problem seem

> to become less and almost meaningless. Doing things that

> comfort yourself is good also...like preparing a bath with

> only a candle lit in the bathroom, or trying a new tea you

> never drank before, or warming a towel to wrap up in

> after your bath.

>

> You have to realize how very special you are. You have

> to sit down and say and look at all you do for others in

> your life and maybe now it is your turn to be treated special.

> It takes loving yourself. They say you cannot love others,

> unless you love yourself first. Love flows from you to

> others around you and that is what people will remember you

> by. It means being yourself and opening up your heart to

> them...it means being their for them and letting them be

> there for you. There is a time when we have to take care of

> others, but there is also a time when others will have to

> take care of us. This gives us a chance to learn compassion

> and understanding, it also gives us a chance to experience

> others doing for us in our times of need. Experience

> life and learn how to enjoy it. Live each and everyday...

> forget about the past and don't be afraid of the future that

> you cannot do anything about. Live in the here and now.

>

> When you wake in the morning...try to add some things to

> your day where you can do something special just for

> yourself....no matter how minor it is. You don't have

> to run around to do that. In the olden days, most people

> only had their homes to stay in...they didn't have the

> modern transportations we have now a days to run all over

> the place. They had to learn how to entertain themselves

> without all the modern TV, computers, etc we have today.

>

> Depression is very hard to come out of. Life at times

> can seem torturous...but, it doesn't have to be that way.

>

> I wish I could give you a hug, cause I know you are going

> through so very much.

>

February 9, 2009

Bobby - you amaze me. Between my medicines, my age, I have trouble doing a

lot of things, such as the things you mention below. I did set up a my

space page to communicate online with my youngest son, but can't get back in

it after setting it up. So, I bought him a pay as you go phone whereby we

can talk anytime we want since it is Verizon like our cell phone. Friends

want me to join Facebook. They say just go there and it will tell you how.

I haven't done it yet. I used to teach computers, and I can't get this one

to back up periodically onto a cd. Tells me it can't use the cd I put in,

but once it did do some and then quit. I used to teach computers, now I have

trouble learning anything new on here. I don't think I have hepatic

encephalopathy like you do. But I can't do what you are doing. I have to

leave the house (and sometimes I have to force myself to do that) and find

outside stimulation to keep me going, and then come home and crash for a day

or so. I have been up since some time after 10 or so, usually turn on the

computer before I go to the bathroom after getting up, but didn't turn it on

until 1/2 hour or so ago, now 4:11. I am determined not to leave the house

today, just going to rest, not even practicing my keyboard today, reading

and sleeping. Maybe I can talk my grandson into making dinner again. Or we

will have tilapia again, simplest thing to make in a hurry. Sorry for the

rambling, put it down to that brain problem. Jan H

> I am replying to my own post to give some examples of how I deal with this

> house bound situation. I used to be a gardener for the city and county of

> Denver. I worked outside every day, 8 hours a day. I a musician, and used to

> play drums in a country band. I am a big game hunter and fisherman, and used

> to camp in our 16 foot Cheyenne lodge in the high country of northern

> Colorado, near the small towb of Oak Creek. We set up our bigger teepee

> poles permanantly on my best friend's private land, 5,000 acres surrounded

> by 100 square miles of national forest and BLM land. We were active in every

> way, spending every weekend in the summer away, fishing or camping or

> attending a mountain man rondevoux. Now we are both out of work, in the

> house 24 hours a day. 7 days a week. Tommorrow I go to the doctor to get my

> eye looked at. I have some kind of infection, and jaundice. I am scared.

> NOw, about how I spend my time, I watch lots of movies at HULU . Com. It is

> free internet movies, and tv. I also use a program called " the gimp " to make

> graphics for my blog, billybobswildride. The link for my blog is in the link

> section.

> The beating heart on my blog, and the spinning wong baker pain scale was

> made with the gimp. You can easily make all kinds of animated gif images

> with this program, and it is totally 100 percent free, because it is open

> source.

> I also use a scylpting program to digitally. Sculpt in 3D. Z brush is very

> fun, but expensive, at $600 dollars. I bought it before I got so sick, in

> hopes of making a career in animation. I still hope to do this. Then there

> is a program called " miro " which is a free web browser for videos.

> There is a free program called google sketch up- you can use to sculpt 3D

> buildings for Google earth. I built our house, and a radio tower, and a

> Greek Orthodox cathedral, and my moms house and uploaded them to the google

> earth 3D warehouse. I am " denver gardener " in the 3D warehouse.

> If you open google earth on your computer, and scroll down to the Denver

> area, you will see a radio tower located south of downtown. I grew up in a

> tiny house 500 feet west of this tower. I built it in google sketch up, and

> just found out now that my model was accepted into the world 3D layer of

> google earth. This means that it will exist as long as there is a google.

> If you use sketch up, you can learn to do 3D modeling for Google earth.

> Keep in mind that school children are responsible for the vast majority of

> the 3D models.

> Then, you can view your creation in google earth. I fly in the flight

> simulater on google earth every day. I have flown in the mountains along the

> Canadian border near Washington state, and even. In the deep ouit back of

> Austrailia. I fly in Africa, and all over Europe. Just install google earth,

> and open the program, scroll down to a location you are familiar with and

> select from the tools drop down menu, and you can select either an f16

> fighter, or a prop plane. It is sometimes breath taking to fly over the

> Colorado rocky mountains in this flight simulater, because is have such a

> vivid imagination, and my encephalopathy does all the rest.

> For those who are really bored, you can join second life. It is a paralelle

> universe located in cyberspace. You sign up, and then you create a persona

> and live whatever kind of life you wish there. They even have their own

> money, which is interchangeable with US dollars, and you can earn money

> there also, and even work at a " job " .

> I hope someone will be able to find something to do using this

> information! Love, Bobby A.

> Sent via BlackBerry from T-Mobile

>

> To: livercirrhosissupport

>

> Date: Saturday, February 7, 2009, 5:07 PM

>

> Welcome to this group. I wish you had at least someone there that

>

> could be with you now. It sounds like you have gone through quite

>

> a lot. If you have any questions at all, please ask us.

>

> All questions are very important. I tell others that their

>

> questions might give an answer to those who just read the

>

> posts here and doesn't post themselves. You never know who

>

> else you might be helping. I'm glad you found us and I hope

>

> you enjoy being here.

>

February 9, 2009

Jan, I'm on facebook and I set it up myself. If I can do it anyone can!! I was

very proud of myself......knowing that this old lady has a facebook page and I

actually did it without help. I feel like I'm so with it!!!!

Love,Jill

We don't remember days, we remember moments.

Life is not measured by the breaths we take,but by the moments that take our

breath away.

>

> From: abijann <no_reply@yahoogroup s.com>

>

> Subject:

>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

>

> Date: Saturday, February 7, 2009, 5:07 PM

>

> Welcome to this group. I wish you had at least someone there that

>

> could be with you now. It sounds like you have gone through quite

>

> a lot. If you have any questions at all, please ask us.

>

> All questions are very important. I tell others that their

>

> questions might give an answer to those who just read the

>

> posts here and doesn't post themselves. You never know who

>

> else you might be helping. I'm glad you found us and I hope

>

> you enjoy being here.

>

February 9, 2009

Hey, I'm on Facebook too! Look me up!

Hugs.........

Diane

________________________________

To: livercirrhosissupport

Sent: Monday, February 9, 2009 7:35:33 PM

Subject: Re:

Jan, I'm on facebook and I set it up myself. If I can do it anyone can!! I was

very proud of myself...... knowing that this old lady has a facebook page and I

actually did it without help. I feel like I'm so with it!!!!

Love,Jill

We don't remember days, we remember moments.

Life is not measured by the breaths we take,but by the moments that take our

breath away.

>

> From: abijann <no_reply@yahoogrou p s.com>

>

> Subject:

>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

>

> Date: Saturday, February 7, 2009, 5:07 PM

>

> Welcome to this group. I wish you had at least someone there that

>

> could be with you now. It sounds like you have gone through quite

>

> a lot. If you have any questions at all, please ask us.

>

> All questions are very important. I tell others that their

>

> questions might give an answer to those who just read the

>

> posts here and doesn't post themselves. You never know who

>

> else you might be helping. I'm glad you found us and I hope

>

> you enjoy being here.

>

February 9, 2009

Oh, Jan, I am going to have to help you with some trouble shooting. Mayvbe we

can find some solutions. It's Occam's razor. Usually a very simple problem,

easily solved. big hug---Love, Bobby

long life, old age, everything good-Apache prayer

________________________________

To: livercirrhosissupport

Sent: Monday, February 9, 2009 4:15:22 PM