Re: don't give up Marie

[Guest guest]

Dear Marie,

I wish I could find words to make everything all right. All I can do is

validate what you're feeling. Why would you feel " normal " ? You have to deal

with the pain and limitations posed by a disease that crashes through every

aspect of your life like a bull in a china shop; you have to deal with the

adjustments of making a move (difficult for anyone); you have to deal with

whatever the heck the medications you're on are doing to your body and mind; you

have to deal with the way your daughter is behaving (which would rip anyone's

heart out); you have to deal with doctors who have very little real knowledge

about our disease but often would rather make you feel crazy than admit their

ignorance; you have to process all the emotions coming at you because of all of

the above. Sane? Why should you feel sane? It's a can of worms. Maybe we can

all help you disentangle them. So many of us have been where you are.

First, DON'T DO ANYTHING RASH. This is no time to make irreversible decisions.

You will not always be where you are now. There is life left. Here's something

I've done: Sit down with a notebook and on the top of each page, write one

issue. Page One could be " My Daughter " . Page two could be " My symptoms " . You

also could have " My doctors " " My medications " " My day-to-day practical

problems " Then just write (if you can--it doesn't have to be neat or readable)

and spill your guts about each problem separately. Curse and swear or whatever

you need to do, but pour your feelings on to the paper. Then list possible

plans of action that might make each one better. Is there anything you can do

today to address any of these things? You can turn back and forth between the

pages as things pop into your head. Sometimes when things pile up they cause

your grief to increase exponentially. Maybe separating them out will help you

tackle one thing at a time. I sometimes draw pictures

or designs in the notebook to express my feelings. Sometimes I cut out

pictures and glue them for collages about how I feel.

Does your yellow pages list any numbers where you can maybe get some social

services for grief and stress counseling? Does your doctor know about the

extraneous stress in your life and how you are feeling?

As for God, I'll tell you my personal belief because you asked. I believe that

He is suffering right along with us. People have made a mess of the world in so

many ways and I believe that even every disease goes back to something someone

somewhere screwed up. I think we're all dealing with the poop that people

through the ages have been throwing at the fan--misusing the environment,

misusing ourselves, misusing each other. Stress piles on stress and mistakes

multiply. I believe that God grieves when good people suffer the effects of a

fallen world and I believe that some day He will fix everything. I don't think

I would still be alive if I didn't believe that. I wish I could help you find a

good church family somewhere in your area. Unfortunately, many of the people

who claim to represent God do no such thing and can sometimes do more damage

than good. It's not always easy to hook up with a good group.

Please hang in there and keep us posted on how you are doing. I hope I haven't

been too preachy. My heart aches for you and I wish I could fix it. All I can

do is pray and tell you that I know part of what you feel (pain, limitations,

doctor crap...). Maybe someone else in the group can identify with some of the

things I don't understand--like being rejected by your own flesh and blood.

Take a deep breath. Don't give up.

laura

snowespi <snowespi@...> wrote:

Good=morning to all! PLease forgive me for what I am about to write. I

am in a very bad way. I can only imagine what my neighbors must think

if they can hear here. I live in condos and we are connected. I can't

keep living like this. I don't know what to do. I feel like I am being

tortured my daughter. For being ill. For having whatever the hell i

have. Auto-immune crap. I am so sick and tired of being sick and tired.

I am tired of the hooops I have to jump throug to get good help from

what is now a business. ANd they call themselves doctors. It make me

sick. If I am not crazy.... I sure will be soon. The way I feel I feel

like I am losing it and am going to go insane. I am not normal. My

behavior this morning is not mnornal. To wake up and within half and

hour be screaming and crying. Like a breakdown or something> is that

normal???? I need help and I don't know what to do. I am on prednisone

and I think that does not effect me very well but what the heck am I

supposed to do when I have to take it or I can't walk. The inflamation

is so bad. I am just SO TIRED!!!!

If there is a God where is he? Marie

[Guest guest]

Dear Marie,

I wish I could find words to make everything all right. All I can do is

validate what you're feeling. Why would you feel " normal " ? You have to deal

with the pain and limitations posed by a disease that crashes through every

aspect of your life like a bull in a china shop; you have to deal with the

adjustments of making a move (difficult for anyone); you have to deal with

whatever the heck the medications you're on are doing to your body and mind; you

have to deal with the way your daughter is behaving (which would rip anyone's

heart out); you have to deal with doctors who have very little real knowledge

about our disease but often would rather make you feel crazy than admit their

ignorance; you have to process all the emotions coming at you because of all of

the above. Sane? Why should you feel sane? It's a can of worms. Maybe we can

all help you disentangle them. So many of us have been where you are.

First, DON'T DO ANYTHING RASH. This is no time to make irreversible decisions.

You will not always be where you are now. There is life left. Here's something

I've done: Sit down with a notebook and on the top of each page, write one

issue. Page One could be " My Daughter " . Page two could be " My symptoms " . You

also could have " My doctors " " My medications " " My day-to-day practical

problems " Then just write (if you can--it doesn't have to be neat or readable)

and spill your guts about each problem separately. Curse and swear or whatever

you need to do, but pour your feelings on to the paper. Then list possible

plans of action that might make each one better. Is there anything you can do

today to address any of these things? You can turn back and forth between the

pages as things pop into your head. Sometimes when things pile up they cause

your grief to increase exponentially. Maybe separating them out will help you

tackle one thing at a time. I sometimes draw pictures

or designs in the notebook to express my feelings. Sometimes I cut out

pictures and glue them for collages about how I feel.

Does your yellow pages list any numbers where you can maybe get some social

services for grief and stress counseling? Does your doctor know about the

extraneous stress in your life and how you are feeling?

As for God, I'll tell you my personal belief because you asked. I believe that

He is suffering right along with us. People have made a mess of the world in so

many ways and I believe that even every disease goes back to something someone

somewhere screwed up. I think we're all dealing with the poop that people

through the ages have been throwing at the fan--misusing the environment,

misusing ourselves, misusing each other. Stress piles on stress and mistakes

multiply. I believe that God grieves when good people suffer the effects of a

fallen world and I believe that some day He will fix everything. I don't think

I would still be alive if I didn't believe that. I wish I could help you find a

good church family somewhere in your area. Unfortunately, many of the people

who claim to represent God do no such thing and can sometimes do more damage

than good. It's not always easy to hook up with a good group.

Please hang in there and keep us posted on how you are doing. I hope I haven't

been too preachy. My heart aches for you and I wish I could fix it. All I can

do is pray and tell you that I know part of what you feel (pain, limitations,

doctor crap...). Maybe someone else in the group can identify with some of the

things I don't understand--like being rejected by your own flesh and blood.

Take a deep breath. Don't give up.

laura

snowespi <snowespi@...> wrote:

Good=morning to all! PLease forgive me for what I am about to write. I

am in a very bad way. I can only imagine what my neighbors must think

if they can hear here. I live in condos and we are connected. I can't

keep living like this. I don't know what to do. I feel like I am being

tortured my daughter. For being ill. For having whatever the hell i

have. Auto-immune crap. I am so sick and tired of being sick and tired.

I am tired of the hooops I have to jump throug to get good help from

what is now a business. ANd they call themselves doctors. It make me

sick. If I am not crazy.... I sure will be soon. The way I feel I feel

like I am losing it and am going to go insane. I am not normal. My

behavior this morning is not mnornal. To wake up and within half and

hour be screaming and crying. Like a breakdown or something> is that

normal???? I need help and I don't know what to do. I am on prednisone

and I think that does not effect me very well but what the heck am I

supposed to do when I have to take it or I can't walk. The inflamation

is so bad. I am just SO TIRED!!!!

If there is a God where is he? Marie