Change of Focus

[Guest guest]

Thanks Mac. Do I feel like a burden? Not yet, but I worry about

becoming one. I worry about putting too much on my children but I

am afraid there is no way to avoid it, eventually. My own mother

died when I was 9, so I have a fair concept of that. My children

are 10 and 18. Both boys that have a lot of growing up to do.

It has always been my policy to tell my children the truth, so I

don't avoid that. But, yes, at the same time I work hard to not

make my disease the focus of their lives and let their lives stay as

normal as possible for the time being. When you don't feel well it

can become difficult to go to the basketball game for them that

night. Mostly I battle relentless fatigue.

How can you help someone with cirrhosis? I don't know the answer to

that. Each person is an individual and has different needs. I am

divorced for 2 reasons. 1. It is difficult to live with someone

who is manic depressive. 2. It is even more difficult to live with

someone whose answer to ALL problems is to scream at me. I was

supposed to fix myself, heal myself. Geez, I couldn't even think

with all the screaming at me and the boys for every imperfection

that we possessed. What was important to me, and what I felt would

help me, and the kids, was to be able to live a more peaceful life.

And it has helped all of us. Harping on a person, for whatever

reason, is just not the answer. If it is a person like me who is a

little bit hard headed, it not only is not the answer, but I am

likely to react and do the wrong thing to show they do not have and

will not have control over me.

I have to say I am impressed with the caregivers on this list and am

sorry for the pain that you have to go through. I am totally amazed

at what some of you endure and the love you have to give. I think

that is an amazingly wonderful gift you give, even if the receiver

doesn't yet appreciate it. I have hope that one day they will.

I don't have that kind of care and have never had it in my life,

but I think it helps me to know that it is possible.

Now forgive me for a little venting on my part. It also makes me

angry that I don't have that kind of care. Especially now that I

realize if I don't have that kind of care it decreases my chances of

getting a new liver. It seems unfair and takes away one of the

things I've had pride in ... that I have always been a surviver on

my own, through my strength of mind.

I wish it were as simple as stopping drinking or drugs for me. But

I don't have cirrhosis for those reasons.

I think there is a fine line between giving up and acceptance. No

one should give up and I have not given up. I hope that I will get

a new liver one day and survive that and go on to do the things I'd

like to do. But despite what my x-husband says, I cannot make them

give me a liver at my convenience and money cannot make it happen.

I'm 46 and I would dearly like to see my grandchildren and have a

sheep farm and keep working and training my herding dogs, etc. etc.

But I think it is irresponsible to ignore the fact that I might not

live a whole lot longer and I must prepare for that as well. I

really need to do that new will, I have no idea where I want to be

buried, except I have this crazy notion I don't want to be in a line

of plots in a generic cemetary in the blazing sun all day, etc.

Hardest of all is the not knowing.... how long will this liver last,

will I get a new one and will I be able to have another chance at

life if I do.

Well, thanks again for the opportunity to vent, Mac. If you can

come up with ways to help those of us with cirrhosis may God bless

you. I think though, you and many of you, are already doing what

you can.

Crislip

Kentucky

---------- Forward message ----------

Date: Tue, 28 Nov 2006 05:59:01 -0000

To: livercirrhosissupport

Subject: Change of Focus

Wow. There has been a lot of great discussion. Awesome!

It's good to get it all out. But it seems like a caregiver free for

all.

Since it was Monday Night Football, how about we punt a question to

the other side?

For me, since I didn't know how my wife " really " felt all of the

time,

I won't know if I was ever the burden. Do those with cirrhosis feel

like a burden to someone they love? Or are the " caregivers " (I like

loved ones myself)a burden also? Do you hide feelings from them so

not

too hurt them? Spare them the truth so to speak? Are there

suggestions

we could do to better the lives of someone with cirrhosis?

Any other topics?

MaC