Re: Not in a good place, I'm having a teenage tantrum

[Guest guest]

Oh Ze....I'm UP...I was just checking the Board before I turned off my Toyboy & There you are in such a rotten state.....BUGGER BUGGER BUGGER....it IS such a S-it for you ....you are WAY too young to be struggling with all of this.

Gosh Rob is a Big Fella isn't he...he HAS to know what is REALLY going on for you it won't be a level playing field for you both in your relationship......I'm not mush of a counsellor so I won't even try that stuff BUT all this protecting the partner business is jsu BOLLOCKS....

Jack n' Jill might've made it up or down that blinkin' hill IF they'd tried to CARRY the Pail TOGETHER !!!!!!!!!!!!!!!!!!!

Your Dad is a whole other kettle of fish....do his medical team know of your circumstances???? Maybe ask them to call your Brother in for a Dose of Reality since he's able bodied! Why do people tippy toe around the useless I Wonder !!!!!!

GOSH I'm in a FIGHTING mood tonight ....amybe I'm trying to lend you some strength my zesty friend! You are allowed to fall over whenever you need to....just be prepared for us to get all toey on your behalf!

Your darling girl will probably be the one who somehow just gets on with it...children have a sixth sense I think. My 5 year old grand-daughter is already grieving my death WITH me the funny little mite. She brings it up, not me. She's got loads of questions & they're often ridiculously practical! We spend a lot of time rolling around onm my bed with her looking through my scanaldous collection of Baubles & jewelry ...she shoosses what earrings I'm to wear for the day....I don't choose the clothes until AFTER she's chosen the Baubles!!!!!!

Life isn't FAIR...it's blinkin' well cHaotic & shocking a lot of the time & we take our place within the chaos...life just IS I reckon!

When I get into the space you're in tonight I often do just as you suggested...I IMAGINE any place, any stae of being, any physicality & GO THERE in my mind....I sit in a comfy chair or flop on a couch or hang on my front verandah & just drift to a spot that feels DIFFERENT!

Oh HUGE HUGS to you Zena.....

in Oz

>> > I'm feeling scared, guilty, worried, down> > I hate what is happening to me> > I hate that there is no cure> > I hate that they can't give me a prognosis> > I hate having to worry about every little thing.> > I hate that I can't just get on an do stuff> > I hate the idea that I might not see my baby grow up.> > I hate that she's got to live life with a mum that isn't firing on all> cylinders.> > I hate that I have to curtail one of my hobbies.> > I hate that I have to plan going out so that I don't run out of O2> > I've tried to talk to Rob, but I end up 'pulling my self together' and> saying 'don't mind me, I'm fine really' And I'm doing this not to upset> him too much. I don't know if he really knows the full implications of> PF, and I don't know how to bring it up.> > But I'm not Ok right now.> > I want to scream and shout and rage at the unfairness of it all (except> that I'd get too out of breath [8-|] I can't even have a damn good> laugh at anything as it makes me cough too much [] )> > My father is having a second op following problems with a hip> replacement, and I was his main carer, (frankly my brother is useless> and selfish when it comes to looking after dad, happy to borrow dads> car, but not so good at running errands) so I'm now worrying at how he's> going to cope> > And to top everything I have a wisdom tooth causing me lots of problems,> it started last night, so I won't get to a dentist until at least> tomorrow and I need to see a doctor tomorrow as I'm starting to get a> cough as well [8-|]> > Right now, I've just had enough and I want to step out of my body for a> little while and hop into someone elses while it get's on with it.>

[Guest guest]

Oh Ze....I'm UP...I was just checking the Board before I turned off my Toyboy & There you are in such a rotten state.....BUGGER BUGGER BUGGER....it IS such a S-it for you ....you are WAY too young to be struggling with all of this.

Gosh Rob is a Big Fella isn't he...he HAS to know what is REALLY going on for you it won't be a level playing field for you both in your relationship......I'm not mush of a counsellor so I won't even try that stuff BUT all this protecting the partner business is jsu BOLLOCKS....

Jack n' Jill might've made it up or down that blinkin' hill IF they'd tried to CARRY the Pail TOGETHER !!!!!!!!!!!!!!!!!!!

Your Dad is a whole other kettle of fish....do his medical team know of your circumstances???? Maybe ask them to call your Brother in for a Dose of Reality since he's able bodied! Why do people tippy toe around the useless I Wonder !!!!!!

GOSH I'm in a FIGHTING mood tonight ....amybe I'm trying to lend you some strength my zesty friend! You are allowed to fall over whenever you need to....just be prepared for us to get all toey on your behalf!

Your darling girl will probably be the one who somehow just gets on with it...children have a sixth sense I think. My 5 year old grand-daughter is already grieving my death WITH me the funny little mite. She brings it up, not me. She's got loads of questions & they're often ridiculously practical! We spend a lot of time rolling around onm my bed with her looking through my scanaldous collection of Baubles & jewelry ...she shoosses what earrings I'm to wear for the day....I don't choose the clothes until AFTER she's chosen the Baubles!!!!!!

Life isn't FAIR...it's blinkin' well cHaotic & shocking a lot of the time & we take our place within the chaos...life just IS I reckon!

When I get into the space you're in tonight I often do just as you suggested...I IMAGINE any place, any stae of being, any physicality & GO THERE in my mind....I sit in a comfy chair or flop on a couch or hang on my front verandah & just drift to a spot that feels DIFFERENT!

Oh HUGE HUGS to you Zena.....

in Oz

>> > I'm feeling scared, guilty, worried, down> > I hate what is happening to me> > I hate that there is no cure> > I hate that they can't give me a prognosis> > I hate having to worry about every little thing.> > I hate that I can't just get on an do stuff> > I hate the idea that I might not see my baby grow up.> > I hate that she's got to live life with a mum that isn't firing on all> cylinders.> > I hate that I have to curtail one of my hobbies.> > I hate that I have to plan going out so that I don't run out of O2> > I've tried to talk to Rob, but I end up 'pulling my self together' and> saying 'don't mind me, I'm fine really' And I'm doing this not to upset> him too much. I don't know if he really knows the full implications of> PF, and I don't know how to bring it up.> > But I'm not Ok right now.> > I want to scream and shout and rage at the unfairness of it all (except> that I'd get too out of breath [8-|] I can't even have a damn good> laugh at anything as it makes me cough too much [] )> > My father is having a second op following problems with a hip> replacement, and I was his main carer, (frankly my brother is useless> and selfish when it comes to looking after dad, happy to borrow dads> car, but not so good at running errands) so I'm now worrying at how he's> going to cope> > And to top everything I have a wisdom tooth causing me lots of problems,> it started last night, so I won't get to a dentist until at least> tomorrow and I need to see a doctor tomorrow as I'm starting to get a> cough as well [8-|]> > Right now, I've just had enough and I want to step out of my body for a> little while and hop into someone elses while it get's on with it.>

[Guest guest]

Thanks for your reply xx

It's my failing, not Rob's that I can't talk to him properly. I know that, and he is really supportive,

My brother is an inconsiderate selfish ar$e to be honest. Always has been, can't see much changing. He's also an ostrich, likes the view under the sand when there is a problem I feel so sorry for my dad right now, as I know he really wants to be doing more for me, as dad's do, but his circumstances mean he's almost house bound (he does manage to hobble to the pub, but it's not that far!) so he's feeling helpless where I'm concerned.

Thank you for catching me xx

> >> >> > I'm feeling scared, guilty, worried, down> >> > I hate what is happening to me> >> > I hate that there is no cure> >> > I hate that they can't give me a prognosis> >> > I hate having to worry about every little thing.> >> > I hate that I can't just get on an do stuff> >> > I hate the idea that I might not see my baby grow up.> >> > I hate that she's got to live life with a mum that isn't firing on all> > cylinders.> >> > I hate that I have to curtail one of my hobbies.> >> > I hate that I have to plan going out so that I don't run out of O2> >> > I've tried to talk to Rob, but I end up 'pulling my self together' and> > saying 'don't mind me, I'm fine really' And I'm doing this not to> upset> > him too much. I don't know if he really knows the full implications of> > PF, and I don't know how to bring it up.> >> > But I'm not Ok right now.> >> > I want to scream and shout and rage at the unfairness of it all> (except> > that I'd get too out of breath [8-|] I can't even have a damn good> > laugh at anything as it makes me cough too much [] )> >> > My father is having a second op following problems with a hip> > replacement, and I was his main carer, (frankly my brother is useless> > and selfish when it comes to looking after dad, happy to borrow dads> > car, but not so good at running errands) so I'm now worrying at how> he's> > going to cope> >> > And to top everything I have a wisdom tooth causing me lots of> problems,> > it started last night, so I won't get to a dentist until at least> > tomorrow and I need to see a doctor tomorrow as I'm starting to get a> > cough as well [8-|]> >> > Right now, I've just had enough and I want to step out of my body for> a> > little while and hop into someone elses while it get's on with it.> >> > > > > > > > <http://smiley.smileycentral.com/download/index.jhtml?partner=ZSzeb097_Z\> SYYYYYYYYAU & utm_id=7925>>

[Guest guest]

zena

sorry you are feeling so blue. i guess the widom tooth has just

about pushed you over the edge. i hope you have some very strong

painkillers. did you phone nhs 24 and ask their advice. they can

make an appointment for you at a hospital clinic at least for

painkillers.

try not to worry about your dad, it sounds like things can only get

better for him and home care will just have to fill the void.

rob on the other hand. men. if only they'd realise we don't need

want or expect them to solve our problems and make everything

better. all we want is a cuddle usually cos its the physical feeling

of support that gives us back our strength.

ive been married 25 years and finally my andy gets it but its so hard

for men who are wired to problem solve. andy is great but he is not

open to knowing what the future is going to bring and i just decided

thats fine because it will be here soon enough and then he will deal

with it. andy has an interest in a few people on the board but i

think when he needs to he will use it himself.

i'm sorry i can't do much to help. especially about lilith. that is

hell the thought of not being around for her. i hope you do get a

transplant. the longest person in the uk is 18 yrs after

transplant.

happy new year babes, we are here.

may

uip 06.06

glasgow

>

>

> I'm feeling scared, guilty, worried, down

>

> I hate what is happening to me

>

> I hate that there is no cure

>

> I hate that they can't give me a prognosis

>

> I hate having to worry about every little thing.

>

> I hate that I can't just get on an do stuff

>

> I hate the idea that I might not see my baby grow up.

>

> I hate that she's got to live life with a mum that isn't firing on

all

> cylinders.

>

> I hate that I have to curtail one of my hobbies.

>

> I hate that I have to plan going out so that I don't run out of O2

>

> I've tried to talk to Rob, but I end up 'pulling my self together'

and

> saying 'don't mind me, I'm fine really' And I'm doing this not to

upset

> him too much. I don't know if he really knows the full

implications of

> PF, and I don't know how to bring it up.

>

> But I'm not Ok right now.

>

> I want to scream and shout and rage at the unfairness of it all

(except

> that I'd get too out of breath [8-|] I can't even have a damn good

> laugh at anything as it makes me cough too much [] )

>

> My father is having a second op following problems with a hip

> replacement, and I was his main carer, (frankly my brother is

useless

> and selfish when it comes to looking after dad, happy to borrow dads

> car, but not so good at running errands) so I'm now worrying at how

he's

> going to cope

>

> And to top everything I have a wisdom tooth causing me lots of

problems,

> it started last night, so I won't get to a dentist until at least

> tomorrow and I need to see a doctor tomorrow as I'm starting to get

a

> cough as well [8-|]

>

> Right now, I've just had enough and I want to step out of my body

for a

> little while and hop into someone elses while it get's on with it.

>

[Guest guest]

Thanks May,

I'm going to watch the rest of Dr Who and go back to bed!

What you said about> >> > > > I'm feeling scared, guilty, worried, down> > > > I hate what is happening to me> > > > I hate that there is no cure> > > > I hate that they can't give me a prognosis> > > > I hate having to worry about every little thing.> > > > I hate that I can't just get on an do stuff> > > > I hate the idea that I might not see my baby grow up.> > > > I hate that she's got to live life with a mum that isn't firing on > all> > cylinders.> > > > I hate that I have to curtail one of my hobbies.> > > > I hate that I have to plan going out so that I don't run out of O2> > > > I've tried to talk to Rob, but I end up 'pulling my self together' > and> > saying 'don't mind me, I'm fine really' And I'm doing this not to > upset> > him too much. I don't know if he really knows the full > implications of> > PF, and I don't know how to bring it up.> > > > But I'm not Ok right now.> > > > I want to scream and shout and rage at the unfairness of it all > (except> > that I'd get too out of breath [8-|] I can't even have a damn good> > laugh at anything as it makes me cough too much [] )> > > > My father is having a second op following problems with a hip> > replacement, and I was his main carer, (frankly my brother is > useless> > and selfish when it comes to looking after dad, happy to borrow dads> > car, but not so good at running errands) so I'm now worrying at how > he's> > going to cope> > > > And to top everything I have a wisdom tooth causing me lots of > problems,> > it started last night, so I won't get to a dentist until at least> > tomorrow and I need to see a doctor tomorrow as I'm starting to get > a> > cough as well [8-|]> > > > Right now, I've just had enough and I want to step out of my body > for a> > little while and hop into someone elses while it get's on with it.> >>

[Guest guest]

Well, I'd loan you my body but its under repair at the moment.

Besides, sure would look funny on you.

Probably all of us hate those same things. I would say the one that

you can do something about is talking to Rob. Pulling yourself

together is vastly overrated. I did it 55 years and never opened up

so I'm a pro. You owe it to yourself to get it all out. You owe it to

him as well. You can't afford the additional emotional energy that

treading lightly and avoiding cause.

You could cut and paste what you wrote here into a word document and

hand it to him. That would bring it up. Ask him the hard questions as

in the " do you know " questions. Taking care of both legal matters and

personal wishes in the future and all those possibilities and

concerns does bring a certain relief. Then you can just go back to

dealing with today more.

I can't imagine the one pain you describe of might not be able to see

your baby grow up. But all you can do is give your child everything

you've got and have preparations just in case. It's still an ugly

thought but all any of us can do in life is our best, not the

impossible. As to you not firing on all cylinders, she doesn't care

about that...only one cylinder that counts to her, your love. Thats

the incredible thing about babies, children, kids. It takes them a

long time to get demanding and build expectations like adults. They

accept and just need love. Tina's son, Kaleb, had a great day

yesterday and he even understands what the outcome might be. But he

had a special day between the movie and then coming home and laying

with her and he hasn't developed the social barriers to keep him from

asking the big question that was on his mind. What bonding they had.

As to your father, you're going to have to depend more on the medical

professionals and put less burden on yourself and just do what you

can. I don't know about there but here the hip replacement work and

therapy programs after are very good. To have complications and have

to get redo's isn't unusual as, I know this comes as a shock, we all

have different body shapes, and sometimes they don't pick the perfect

match the first time. I don't know but I saw my father-in-law go

through this in his 80's and he went through it popping back out and

having to get it forced back into place, then another surgery. But

then he was fine (he'd had both knees and both hips done).

I can't scream today either so I'll do a huge cyberscream on your

behalf. I'm lucky i guess that I don't have a baby to worry about but

at the same time I feel a bit unlucky I don't. Go hold her and at

least for a moment you're in another special place.

Long ago lost my wisdom....and my wisdom teeth. Not sure why

sometimes they work so hard to try to let those devils come in....my

mouth was way too small and, in spite of what some ugly people might

say (but of course not me), I'm sure yours isn't big enough either

for extra unneeded teeth.

One of my worst habits in my worst depression was to ruminate,

because once I'd start I'd do it for days (basically stepping out of

my body and making myself numb). However, I'm still allowed to do it

for a day when I need to. So maybe today is your day to step out and

just not deal with it. I'll join you wherever you step because its

about all I can do today, as my marching orders from ER allow for

little else. Strangely, I might have spent all day home doing little

today anyway, but now knowing I have to still sucks.

Do you feel like you're prisoner to your body? I think I do

sometimes. But then I decide to break free (Houdini am me). Now, I

know I can't for 2-3 days but meanwhile I'm working on the plans

after those days.

Meanwhile all the things around here I needed to do and didn't feel

like Sunday and couldn't yesterday because wasted day at ER now why

is it when I have a good excuse not to do them (could have done them

for days) it annoys me, I want to do them now.

OK, my scream for you was heard throughout cyberland. Not much other

advice except to level with Rob, even if he doesn't want to hear it.

My next of kin is my ex-wife (yes, my world is strange) and she's the

one who insisted on taking me to the ER (I would have driven self)

but it helps that she is fully aware, even bluntly aware. I know its

painful to her but I've found over the years that she's pretty

strong, except when married to me and me taking care of everything.

But being aware means I don't have to hide facts, I didn't need to

say yesterday " oh its nothing " . I could say the doctor said get to ER

because it could be a blood clot and I could die if I don't. Never

thought I'd be looking an pneumonia as a good result but because she

knew, she was able to as well. I have a portfolio that I call my

hospital and emergency papers and notes. She's well aware of what it

means and that I carried it with me (Medical power of attorney and

everything else in it). But it means not only am I prepared for all

the possible outcomes, so is she. If you prepare Rob, you'll both

feel better and one burden of pretending will be lifted.

>

>

> I'm feeling scared, guilty, worried, down

>

> I hate what is happening to me

>

> I hate that there is no cure

>

> I hate that they can't give me a prognosis

>

> I hate having to worry about every little thing.

>

> I hate that I can't just get on an do stuff

>

> I hate the idea that I might not see my baby grow up.

>

> I hate that she's got to live life with a mum that isn't firing on

all

> cylinders.

>

> I hate that I have to curtail one of my hobbies.

>

> I hate that I have to plan going out so that I don't run out of O2

>

> I've tried to talk to Rob, but I end up 'pulling my self together'

and

> saying 'don't mind me, I'm fine really' And I'm doing this not to

upset

> him too much. I don't know if he really knows the full

implications of

> PF, and I don't know how to bring it up.

>

> But I'm not Ok right now.

>

> I want to scream and shout and rage at the unfairness of it all

(except

> that I'd get too out of breath [8-|] I can't even have a damn good

> laugh at anything as it makes me cough too much [] )

>

> My father is having a second op following problems with a hip

> replacement, and I was his main carer, (frankly my brother is

useless

> and selfish when it comes to looking after dad, happy to borrow dads

> car, but not so good at running errands) so I'm now worrying at how

he's

> going to cope

>

> And to top everything I have a wisdom tooth causing me lots of

problems,

> it started last night, so I won't get to a dentist until at least

> tomorrow and I need to see a doctor tomorrow as I'm starting to get

a

> cough as well [8-|]

>

> Right now, I've just had enough and I want to step out of my body

for a

> little while and hop into someone elses while it get's on with it.

>

[Guest guest]

Yes, sounds familiar....I didn't talk through an entire marriage

about things bothering me. I wasn't very smart....you're smarter than

me so level with Rob.

As to brother, nothing you can do.

As to father, oh he can still father.....over the phone......when you

can get to see him, just hearing your voice, seeing you, hugging you.

You can show him that at this point in his life fathering is just

about one thing, being there to talk to when you want to hear his

voice. My father died when I was in college and we weren't close (to

say the least). But, I did observe and her father. And, I know

that he still provided comfort in just being there but I know that

even by just discussing ordinary things she helped him still feel

like a father. Call and talk to him about your baby....the funny

things she's done recently. Share something that simple and he'll

feel all the joy of being your father.

> > >

> > >

> > > I'm feeling scared, guilty, worried, down

> > >

> > > I hate what is happening to me

> > >

> > > I hate that there is no cure

> > >

> > > I hate that they can't give me a prognosis

> > >

> > > I hate having to worry about every little thing.

> > >

> > > I hate that I can't just get on an do stuff

> > >

> > > I hate the idea that I might not see my baby grow up.

> > >

> > > I hate that she's got to live life with a mum that isn't firing

on

> all

> > > cylinders.

> > >

> > > I hate that I have to curtail one of my hobbies.

> > >

> > > I hate that I have to plan going out so that I don't run out of

O2

> > >

> > > I've tried to talk to Rob, but I end up 'pulling my self

together'

> and

> > > saying 'don't mind me, I'm fine really' And I'm doing this not

to

> > upset

> > > him too much. I don't know if he really knows the full

implications

> of

> > > PF, and I don't know how to bring it up.

> > >

> > > But I'm not Ok right now.

> > >

> > > I want to scream and shout and rage at the unfairness of it all

> > (except

> > > that I'd get too out of breath [8-|] I can't even have a damn

good

> > > laugh at anything as it makes me cough too much [] )

> > >

> > > My father is having a second op following problems with a hip

> > > replacement, and I was his main carer, (frankly my brother is

> useless

> > > and selfish when it comes to looking after dad, happy to borrow

dads

> > > car, but not so good at running errands) so I'm now worrying at

how

> > he's

> > > going to cope

> > >

> > > And to top everything I have a wisdom tooth causing me lots of

> > problems,

> > > it started last night, so I won't get to a dentist until at

least

> > > tomorrow and I need to see a doctor tomorrow as I'm starting to

get

> a

> > > cough as well [8-|]

> > >

> > > Right now, I've just had enough and I want to step out of my

body

> for

> > a

> > > little while and hop into someone elses while it get's on with

it.

> > >

> >

> >

> >

> >

> >

> >

> >

> >

> <http://smiley.smileycentral.com/download/index.jhtml?

partner=ZSzeb097_Z\

> \

> > SYYYYYYYYAU & utm_id=7925>

> >

>

[Guest guest]

Yes, sounds familiar....I didn't talk through an entire marriage

about things bothering me. I wasn't very smart....you're smarter than

me so level with Rob.

As to brother, nothing you can do.

As to father, oh he can still father.....over the phone......when you

can get to see him, just hearing your voice, seeing you, hugging you.

You can show him that at this point in his life fathering is just

about one thing, being there to talk to when you want to hear his

voice. My father died when I was in college and we weren't close (to

say the least). But, I did observe and her father. And, I know

that he still provided comfort in just being there but I know that

even by just discussing ordinary things she helped him still feel

like a father. Call and talk to him about your baby....the funny

things she's done recently. Share something that simple and he'll

feel all the joy of being your father.

> > >

> > >

> > > I'm feeling scared, guilty, worried, down

> > >

> > > I hate what is happening to me

> > >

> > > I hate that there is no cure

> > >

> > > I hate that they can't give me a prognosis

> > >

> > > I hate having to worry about every little thing.

> > >

> > > I hate that I can't just get on an do stuff

> > >

> > > I hate the idea that I might not see my baby grow up.

> > >

> > > I hate that she's got to live life with a mum that isn't firing

on

> all

> > > cylinders.

> > >

> > > I hate that I have to curtail one of my hobbies.

> > >

> > > I hate that I have to plan going out so that I don't run out of

O2

> > >

> > > I've tried to talk to Rob, but I end up 'pulling my self

together'

> and

> > > saying 'don't mind me, I'm fine really' And I'm doing this not

to

> > upset

> > > him too much. I don't know if he really knows the full

implications

> of

> > > PF, and I don't know how to bring it up.

> > >

> > > But I'm not Ok right now.

> > >

> > > I want to scream and shout and rage at the unfairness of it all

> > (except

> > > that I'd get too out of breath [8-|] I can't even have a damn

good

> > > laugh at anything as it makes me cough too much [] )

> > >

> > > My father is having a second op following problems with a hip

> > > replacement, and I was his main carer, (frankly my brother is

> useless

> > > and selfish when it comes to looking after dad, happy to borrow

dads

> > > car, but not so good at running errands) so I'm now worrying at

how

> > he's

> > > going to cope

> > >

> > > And to top everything I have a wisdom tooth causing me lots of

> > problems,

> > > it started last night, so I won't get to a dentist until at

least

> > > tomorrow and I need to see a doctor tomorrow as I'm starting to

get

> a

> > > cough as well [8-|]

> > >

> > > Right now, I've just had enough and I want to step out of my

body

> for

> > a

> > > little while and hop into someone elses while it get's on with

it.

> > >

> >

> >

> >

> >

> >

> >

> >

> >

> <http://smiley.smileycentral.com/download/index.jhtml?

partner=ZSzeb097_Z\

> \

> > SYYYYYYYYAU & utm_id=7925>

> >

>

[Guest guest]

New Years Resolution....never will be without painkillers in the

house again. I never used them before in my life but I had leftovers

from surgery and had them here on Sunday. Not only relieved pain but

protected lung by allowing me to breathe deeper. I imagine I would

have been worse pneumonia wise without them. I won't use them when

not needed, but I've learned they have their time and place.

Ok, you people keep talking about Dr. Who....now I have to go

research this thing....whatever it is. I can't go on through another

day ignorant. Off to find out about this strange British phenomenon.

> > >

> > >

> > > I'm feeling scared, guilty, worried, down

> > >

> > > I hate what is happening to me

> > >

> > > I hate that there is no cure

> > >

> > > I hate that they can't give me a prognosis

> > >

> > > I hate having to worry about every little thing.

> > >

> > > I hate that I can't just get on an do stuff

> > >

> > > I hate the idea that I might not see my baby grow up.

> > >

> > > I hate that she's got to live life with a mum that isn't firing

on

> > all

> > > cylinders.

> > >

> > > I hate that I have to curtail one of my hobbies.

> > >

> > > I hate that I have to plan going out so that I don't run out of

O2

> > >

> > > I've tried to talk to Rob, but I end up 'pulling my self

together'

> > and

> > > saying 'don't mind me, I'm fine really' And I'm doing this not

to

> > upset

> > > him too much. I don't know if he really knows the full

> > implications of

> > > PF, and I don't know how to bring it up.

> > >

> > > But I'm not Ok right now.

> > >

> > > I want to scream and shout and rage at the unfairness of it all

> > (except

> > > that I'd get too out of breath [8-|] I can't even have a damn

good

> > > laugh at anything as it makes me cough too much [] )

> > >

> > > My father is having a second op following problems with a hip

> > > replacement, and I was his main carer, (frankly my brother is

> > useless

> > > and selfish when it comes to looking after dad, happy to borrow

dads

> > > car, but not so good at running errands) so I'm now worrying at

how

> > he's

> > > going to cope

> > >

> > > And to top everything I have a wisdom tooth causing me lots of

> > problems,

> > > it started last night, so I won't get to a dentist until at

least

> > > tomorrow and I need to see a doctor tomorrow as I'm starting to

get

> > a

> > > cough as well [8-|]

> > >

> > > Right now, I've just had enough and I want to step out of my

body

> > for a

> > > little while and hop into someone elses while it get's on with

it.

> > >

> >

>

[Guest guest]

New Years Resolution....never will be without painkillers in the

house again. I never used them before in my life but I had leftovers

from surgery and had them here on Sunday. Not only relieved pain but

protected lung by allowing me to breathe deeper. I imagine I would

have been worse pneumonia wise without them. I won't use them when

not needed, but I've learned they have their time and place.

Ok, you people keep talking about Dr. Who....now I have to go

research this thing....whatever it is. I can't go on through another

day ignorant. Off to find out about this strange British phenomenon.

> > >

> > >

> > > I'm feeling scared, guilty, worried, down

> > >

> > > I hate what is happening to me

> > >

> > > I hate that there is no cure

> > >

> > > I hate that they can't give me a prognosis

> > >

> > > I hate having to worry about every little thing.

> > >

> > > I hate that I can't just get on an do stuff

> > >

> > > I hate the idea that I might not see my baby grow up.

> > >

> > > I hate that she's got to live life with a mum that isn't firing

on

> > all

> > > cylinders.

> > >

> > > I hate that I have to curtail one of my hobbies.

> > >

> > > I hate that I have to plan going out so that I don't run out of

O2

> > >

> > > I've tried to talk to Rob, but I end up 'pulling my self

together'

> > and

> > > saying 'don't mind me, I'm fine really' And I'm doing this not

to

> > upset

> > > him too much. I don't know if he really knows the full

> > implications of

> > > PF, and I don't know how to bring it up.

> > >

> > > But I'm not Ok right now.

> > >

> > > I want to scream and shout and rage at the unfairness of it all

> > (except

> > > that I'd get too out of breath [8-|] I can't even have a damn

good

> > > laugh at anything as it makes me cough too much [] )

> > >

> > > My father is having a second op following problems with a hip

> > > replacement, and I was his main carer, (frankly my brother is

> > useless

> > > and selfish when it comes to looking after dad, happy to borrow

dads

> > > car, but not so good at running errands) so I'm now worrying at

how

> > he's

> > > going to cope

> > >

> > > And to top everything I have a wisdom tooth causing me lots of

> > problems,

> > > it started last night, so I won't get to a dentist until at

least

> > > tomorrow and I need to see a doctor tomorrow as I'm starting to

get

> > a

> > > cough as well [8-|]

> > >

> > > Right now, I've just had enough and I want to step out of my

body

> > for a

> > > little while and hop into someone elses while it get's on with

it.

> > >

> >

>

[Guest guest]

Oh Zena!

My heart breaks for you and the tears run for you! And I so know how

it is to carry everything for everyone and then wonder how everyone

will survive when your gone! And do they get it? no not really, why

dont they get it? Because they dont want to get or I dont want them

to get it?

I will tell you what I did to my Rob (yep my other halfs name is Rob

too) I took the book from the Files section here " Patient Information

Handbook " I printed it all out and made it into a book! Then one

day when Rob was in front of the TV watching racing I went in and

said here you can read about what it is they say I have. It took him

a few days but he read through it awhile and he got the gist of it,

he probably stopped when it got to the scary parts but he got it

enough to figure out that it was serious. It still sits here on our

desk tucked in the papers but always visual enough to know its there.

I think our families dont want to see because we dont want them to

see, its scary to us so we protect them. Your dad is like my mum, my

mum lives with me (gee look at that writing mum and not mom and I

keep saying 's words oh I need some sleep I guess) anyways my mom

has diabetes and has had eye surgery etc, if you ask me she shouldnt

be driving but the state lets her. She is hard and complicated most

of the time and used to me taking care of things but she has had to

adjust because I have had to insist on it but in the end she is my

mom I can tell her some things and she gets it but doesnt know what

to say. But she is still there.

I know how it is to want to be some where else and to drift away gosh

I do it often.

Oh Lilith, sweet little one she is. that is the devastating part and

that is the part that will eat you alive Zena if you let it, it will

consume you if you allow yourself to think like that all the time.

Kids are so resilunt and bounce back they do as says ask silly

but practical questions. Share the time with her answer her

questions as they come, rejoice in the time you do have with her

because look around the board Joyce has been here for years, and

Leanne and some of the others have been dealing with this for years

and they are still here, dont miss the time you do have beating

yourself up about what you cant have anymore your burning energy on

the past then and not the future! Take charge of your care, work on

what you can, eat healthy, live healthy, exercise and so forth to

extend what ever time it is that you have here on earth! If you

yourself read through the patient information book you will see a

part in there that says Attitude is everything so how you look at

this and fight for yourself ends up being your going to be here

awhile longer, its probably the stuborness that keeps us here alot

longer, right Joyce?

Hang in there my friend! It will all come into place and another day

will come tomorrow and the sun will shine for you again!

Sandie

> > > >

> > > >

> > > > I'm feeling scared, guilty, worried, down

> > > >

> > > > I hate what is happening to me

> > > >

> > > > I hate that there is no cure

> > > >

> > > > I hate that they can't give me a prognosis

> > > >

> > > > I hate having to worry about every little thing.

> > > >

> > > > I hate that I can't just get on an do stuff

> > > >

> > > > I hate the idea that I might not see my baby grow up.

> > > >

> > > > I hate that she's got to live life with a mum that isn't

firing

> on

> > > all

> > > > cylinders.

> > > >

> > > > I hate that I have to curtail one of my hobbies.

> > > >

> > > > I hate that I have to plan going out so that I don't run out

of

> O2

> > > >

> > > > I've tried to talk to Rob, but I end up 'pulling my self

> together'

> > > and

> > > > saying 'don't mind me, I'm fine really' And I'm doing this

not

> to

> > > upset

> > > > him too much. I don't know if he really knows the full

> > > implications of

> > > > PF, and I don't know how to bring it up.

> > > >

> > > > But I'm not Ok right now.

> > > >

> > > > I want to scream and shout and rage at the unfairness of it

all

> > > (except

> > > > that I'd get too out of breath [8-|] I can't even have a damn

> good

> > > > laugh at anything as it makes me cough too much [] )

> > > >

> > > > My father is having a second op following problems with a hip

> > > > replacement, and I was his main carer, (frankly my brother is

> > > useless

> > > > and selfish when it comes to looking after dad, happy to

borrow

> dads

> > > > car, but not so good at running errands) so I'm now worrying

at

> how

> > > he's

> > > > going to cope

> > > >

> > > > And to top everything I have a wisdom tooth causing me lots of

> > > problems,

> > > > it started last night, so I won't get to a dentist until at

> least

> > > > tomorrow and I need to see a doctor tomorrow as I'm starting

to

> get

> > > a

> > > > cough as well [8-|]

> > > >

> > > > Right now, I've just had enough and I want to step out of my

> body

> > > for a

> > > > little while and hop into someone elses while it get's on

with

> it.

> > > >

> > >

> >

>

[Guest guest]

Oh Zena!

My heart breaks for you and the tears run for you! And I so know how

it is to carry everything for everyone and then wonder how everyone

will survive when your gone! And do they get it? no not really, why

dont they get it? Because they dont want to get or I dont want them

to get it?

I will tell you what I did to my Rob (yep my other halfs name is Rob

too) I took the book from the Files section here " Patient Information

Handbook " I printed it all out and made it into a book! Then one

day when Rob was in front of the TV watching racing I went in and

said here you can read about what it is they say I have. It took him

a few days but he read through it awhile and he got the gist of it,

he probably stopped when it got to the scary parts but he got it

enough to figure out that it was serious. It still sits here on our

desk tucked in the papers but always visual enough to know its there.

I think our families dont want to see because we dont want them to

see, its scary to us so we protect them. Your dad is like my mum, my

mum lives with me (gee look at that writing mum and not mom and I

keep saying 's words oh I need some sleep I guess) anyways my mom

has diabetes and has had eye surgery etc, if you ask me she shouldnt

be driving but the state lets her. She is hard and complicated most

of the time and used to me taking care of things but she has had to

adjust because I have had to insist on it but in the end she is my

mom I can tell her some things and she gets it but doesnt know what

to say. But she is still there.

I know how it is to want to be some where else and to drift away gosh

I do it often.

Oh Lilith, sweet little one she is. that is the devastating part and

that is the part that will eat you alive Zena if you let it, it will

consume you if you allow yourself to think like that all the time.

Kids are so resilunt and bounce back they do as says ask silly

but practical questions. Share the time with her answer her

questions as they come, rejoice in the time you do have with her

because look around the board Joyce has been here for years, and

Leanne and some of the others have been dealing with this for years

and they are still here, dont miss the time you do have beating

yourself up about what you cant have anymore your burning energy on

the past then and not the future! Take charge of your care, work on

what you can, eat healthy, live healthy, exercise and so forth to

extend what ever time it is that you have here on earth! If you

yourself read through the patient information book you will see a

part in there that says Attitude is everything so how you look at

this and fight for yourself ends up being your going to be here

awhile longer, its probably the stuborness that keeps us here alot

longer, right Joyce?

Hang in there my friend! It will all come into place and another day

will come tomorrow and the sun will shine for you again!

Sandie

> > > >

> > > >

> > > > I'm feeling scared, guilty, worried, down

> > > >

> > > > I hate what is happening to me

> > > >

> > > > I hate that there is no cure

> > > >

> > > > I hate that they can't give me a prognosis

> > > >

> > > > I hate having to worry about every little thing.

> > > >

> > > > I hate that I can't just get on an do stuff

> > > >

> > > > I hate the idea that I might not see my baby grow up.

> > > >

> > > > I hate that she's got to live life with a mum that isn't

firing

> on

> > > all

> > > > cylinders.

> > > >

> > > > I hate that I have to curtail one of my hobbies.

> > > >

> > > > I hate that I have to plan going out so that I don't run out

of

> O2

> > > >

> > > > I've tried to talk to Rob, but I end up 'pulling my self

> together'

> > > and

> > > > saying 'don't mind me, I'm fine really' And I'm doing this

not

> to

> > > upset

> > > > him too much. I don't know if he really knows the full

> > > implications of

> > > > PF, and I don't know how to bring it up.

> > > >

> > > > But I'm not Ok right now.

> > > >

> > > > I want to scream and shout and rage at the unfairness of it

all

> > > (except

> > > > that I'd get too out of breath [8-|] I can't even have a damn

> good

> > > > laugh at anything as it makes me cough too much [] )

> > > >

> > > > My father is having a second op following problems with a hip

> > > > replacement, and I was his main carer, (frankly my brother is

> > > useless

> > > > and selfish when it comes to looking after dad, happy to

borrow

> dads

> > > > car, but not so good at running errands) so I'm now worrying

at

> how

> > > he's

> > > > going to cope

> > > >

> > > > And to top everything I have a wisdom tooth causing me lots of

> > > problems,

> > > > it started last night, so I won't get to a dentist until at

> least

> > > > tomorrow and I need to see a doctor tomorrow as I'm starting

to

> get

> > > a

> > > > cough as well [8-|]

> > > >

> > > > Right now, I've just had enough and I want to step out of my

> body

> > > for a

> > > > little while and hop into someone elses while it get's on

with

> it.

> > > >

> > >

> >

>

[Guest guest]

Oh, Zena honey, you just break my heart. Always when I even lean towards pity for myself......I think of all you babies with little ones to raise and living to do....and I think "why not me?" I have lived a full life, I was blessed to be allowed to raise my kids, to see 7 grandbabies born and hold them close. I have been blessed with a great guy and wonderful friends. God has given me so much in this life.

You guys deserve a chance to live, too. I am praying so hard for a cure for all of you, even a treatment.

Scream and kick if you want. You are allowed!

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> > I'm feeling scared, guilty, worried, down> > I hate what is happening to me> > I hate that there is no cure> > I hate that they can't give me a prognosis> > I hate having to worry about every little thing.> > I hate that I can't just get on an do stuff> > I hate the idea that I might not see my baby grow up.> > I hate that she's got to live life with a mum that isn't firing on all> cylinders.> > I hate that I have to curtail one of my hobbies.> > I hate that I have to plan going out so that I don't run out of O2> > I've tried to talk to Rob, but I end up 'pulling my self together' and> saying 'don't mind me, I'm fine really' And I'm doing this not to upset> him too much. I don't know if he really knows the full implications of> PF, and I don't know how to bring it up.> > But I'm not Ok right now.> > I want to scream and shout and rage at the unfairness of it all (except> that I'd get too out of breath [8-|] I can't even have a damn good> laugh at anything as it makes me cough too much [] )> > My father is having a second op following problems with a hip> replacement, and I was his main carer, (frankly my brother is useless> and selfish when it comes to looking after dad, happy to borrow dads> car, but not so good at running errands) so I'm now worrying at how he's> going to cope> > And to top everything I have a wisdom tooth causing me lots of problems,> it started last night, so I won't get to a dentist until at least> tomorrow and I need to see a doctor tomorrow as I'm starting to get a> cough as well [8-|]> > Right now, I've just had enough and I want to step out of my body for a> little while and hop into someone elses while it get's on with it.>

[Guest guest]

Zena...I wish I could wave a magic wand (we wave magic on this board for other things!) and take away all your problems and stress.

I heard Dr. (on the radio) say if we can't take care of loved ones (your dad)we needn't feel bad for what we can't do, just try to 'provide' help for them another way. Does this work for you? Sounds like your brother may not be an answer, but maybe if you talk straight to him....

Your resistance is low right now but it will come back up.

Hang on.

Hugs.

Mama-Sher, ild 3-06, OR.Don't fret about tomorrow, God is already there!

[Guest guest]

...you are a girl after my own heart. I feel frustrated too when the able-bodied are sooo catered too. How do women get themselves in a position to be 'afraid' of telling it like it is.

When someone steps on my toes I holler OUCH!

I watch a lot (to much?) of TV to carry me away. It works for me. And music.

hugs.

Mama-Sher, ild 3-06, OR.Don't fret about tomorrow, God is already there!

Re: Not in a good place, I'm having a teenage tantrum

Oh Ze....I'm UP...I was just checking the Board before I turned off my Toyboy & There you are in such a rotten state.....BUGGER BUGGER BUGGER....it IS such a S-it for you ....you are WAY too young to be struggling with all of this.

Gosh Rob is a Big Fella isn't he...he HAS to know what is REALLY going on for you it won't be a level playing field for you both in your relationship......I'm not mush of a counsellor so I won't even try that stuff BUT all this protecting the partner business is jsu BOLLOCKS....

Jack n' Jill might've made it up or down that blinkin' hill IF they'd tried to CARRY the Pail TOGETHER !!!!!!!!!!!!!!!!!!!

Your Dad is a whole other kettle of fish....do his medical team know of your circumstances???? Maybe ask them to call your Brother in for a Dose of Reality since he's able bodied! Why do people tippy toe around the useless I Wonder !!!!!!

GOSH I'm in a FIGHTING mood tonight ....amybe I'm trying to lend you some strength my zesty friend! You are allowed to fall over whenever you need to....just be prepared for us to get all toey on your behalf!

Your darling girl will probably be the one who somehow just gets on with it...children have a sixth sense I think. My 5 year old grand-daughter is already grieving my death WITH me the funny little mite. She brings it up, not me. She's got loads of questions & they're often ridiculously practical! We spend a lot of time rolling around onm my bed with her looking through my scanaldous collection of Baubles & jewelry ...she shoosses what earrings I'm to wear for the day....I don't choose the clothes until AFTER she's chosen the Baubles!!!!!!

Life isn't FAIR...it's blinkin' well cHaotic & shocking a lot of the time & we take our place within the chaos...life just IS I reckon!

When I get into the space you're in tonight I often do just as you suggested...I IMAGINE any place, any stae of being, any physicality & GO THERE in my mind....I sit in a comfy chair or flop on a couch or hang on my front verandah & just drift to a spot that feels DIFFERENT!

Oh HUGE HUGS to you Zena.....

in Oz

>> > I'm feeling scared, guilty, worried, down> > I hate what is happening to me> > I hate that there is no cure> > I hate that they can't give me a prognosis> > I hate having to worry about every little thing.> > I hate that I can't just get on an do stuff> > I hate the idea that I might not see my baby grow up.> > I hate that she's got to live life with a mum that isn't firing on all> cylinders.> > I hate that I have to curtail one of my hobbies.> > I hate that I have to plan going out so that I don't run out of O2> > I've tried to talk to Rob, but I end up 'pulling my self together' and> saying 'don't mind me, I'm fine really' And I'm doing this not to upset> him too much. I don't know if he really knows the full implications of> PF, and I don't know how to bring it up.> > But I'm not Ok right now.> > I want to scream and shout and rage at the unfairness of it all (except> that I'd get too out of breath [8-|] I can't even have a damn good> laugh at anything as it makes me cough too much [] )> > My father is having a second op following problems with a hip> replacement, and I was his main carer, (frankly my brother is useless> and selfish when it comes to looking after dad, happy to borrow dads> car, but not so good at running errands) so I'm now worrying at how he's> going to cope> > And to top everything I have a wisdom tooth causing me lots of problems,> it started last night, so I won't get to a dentist until at least> tomorrow and I need to see a doctor tomorrow as I'm starting to get a> cough as well [8-|]> > Right now, I've just had enough and I want to step out of my body for a> little while and hop into someone elses while it get's on with it.>

[Guest guest]

Bruce,

Sound advice as always xx

I think I keep thinking I'll find the right time to talk to Rob 'properly' and there never seems to be a right time. I will talk to him, I know it's better for both of us in the long run. Talking about others is a very good idea, thank you for that one

Love Ze xx> > > > > >> > > > > >> > > > > > I'm feeling scared, guilty, worried, down> > > > > >> > > > > > I hate what is happening to me> > > > > >> > > > > > I hate that there is no cure> > > > > >> > > > > > I hate that they can't give me a prognosis> > > > > >> > > > > > I hate having to worry about every little thing.> > > > > >> > > > > > I hate that I can't just get on an do stuff> > > > > >> > > > > > I hate the idea that I might not see my baby grow up.> > > > > >> > > > > > I hate that she's got to live life with a mum that isn't > > firing > > > on> > > > > all> > > > > > cylinders.> > > > > >> > > > > > I hate that I have to curtail one of my hobbies.> > > > > >> > > > > > I hate that I have to plan going out so that I don't run > out > > of > > > O2> > > > > >> > > > > > I've tried to talk to Rob, but I end up 'pulling my self > > > together'> > > > > and> > > > > > saying 'don't mind me, I'm fine really' And I'm doing this > > not > > > to> > > > > upset> > > > > > him too much. I don't know if he really knows the full> > > > > implications of> > > > > > PF, and I don't know how to bring it up.> > > > > >> > > > > > But I'm not Ok right now.> > > > > >> > > > > > I want to scream and shout and rage at the unfairness of it > > all> > > > > (except> > > > > > that I'd get too out of breath [8-|] I can't even have a > damn > > > good> > > > > > laugh at anything as it makes me cough too much [] )> > > > > >> > > > > > My father is having a second op following problems with a > hip> > > > > > replacement, and I was his main carer, (frankly my brother > is> > > > > useless> > > > > > and selfish when it comes to looking after dad, happy to > > borrow > > > dads> > > > > > car, but not so good at running errands) so I'm now > worrying > > at > > > how> > > > > he's> > > > > > going to cope> > > > > >> > > > > > And to top everything I have a wisdom tooth causing me lots > of> > > > > problems,> > > > > > it started last night, so I won't get to a dentist until at > > > least> > > > > > tomorrow and I need to see a doctor tomorrow as I'm > starting > > to > > > get> > > > > a> > > > > > cough as well [8-|]> > > > > >> > > > > > Right now, I've just had enough and I want to step out of > my > > > body> > > > > for a> > > > > > little while and hop into someone elses while it get's on > > with > > > it.> > > > > >> > > > >> > > >> > >> >>

[Guest guest]

Bruce...I'm really glad that you and can have good talks. It's obvious you two care about/for each other. She's close and you have a history together. I'm glad you two are still 'together'.

Mama-Sher, ild 3-06, OR.Don't fret about tomorrow, God is already there!

Re: Not in a good place, I'm having a teenage tantrum

Sharing as much as possible helps prepare. I share with stories about the important people in my life-yes that includes all of you. Now, I do it just like she shares stories of her friends. But, I think it puts it in real terms too, human terms. I might talk about our wild Aussie New Year but I also talk about those further along, in stages I've yet to reach and the struggles. She knows I have this incredible friend, Gwynne, in Fort Worth who is courageous but on a high liter flow waiting and praying for a transplant and had a very scary day last week. As we were spending 7 1/2 hours mostly with nothing to do we talked yesterday, not about how bad I was or would be or such but about the realities as I shared things about my friends. So she heard of Joyce's episode with the humidifier and generally of how I think and worry about her. I talked to her about a man on another board who died recently in hospice and the struggles before he accepted that as the appropriate step then how he died peacefully.Yes, I talk about the Aussie Crazy, Gena, too. And I've mentioned Irene and her job. And we've talked about the insanity and courage of Motorcycle and my hopes that Leanne will get her transplant in time to make San . I've talked about other's shower experiences, is the word Bubble Head, and the time in which something that taken for granted becomes so difficult. So, without ever coming here to the board, she's getting a picture of the realities of all the stages of the disease and the things we go through. Not forced, but just the way two people discuss their friends. So, she knows the support I get here and she knows the love we have as a community. But, in knowing those things and sharing she knows the scary and bad parts too. She knows that yesterday's trip to the ER isn't unusual and as time passes they become more a normal part of our lives. She knows my life expectancy but she knows from my discussing my friends what can happen and how it is to live at the various stages and the choices we make and I've made. I know the funny things her students did this week and the teacher who made a fool of herself in the dark backstage before the talent show by reaching for another teacher and unintentionally finding herself grabbing her breasts.....lol. I know how her friends are doing. I know her mother's bad days with COPD. So, rather than the PFF brochure or some internet site (and I quite imagine she's done research online herself) maybe its easier if you talk about whats going on in your friends lives, the good and bad, those more advanced than you, and, yes, even discussing when one of them dies. If I were talking to her tonight, I'm sure I'd be talking about Zena's anger today and fears of not being there for her daughter and wondering how to talk to Rob. So, maybe just talking about those in your life here might tell him a lot about the realities of the disease in an easier way. Then as you talk of your fears for your friends, you can discuss your fears for yourself.> > > > >> > > > >> > > > > I'm feeling scared, guilty, worried, down> > > > >> > > > > I hate what is happening to me> > > > >> > > > > I hate that there is no cure> > > > >> > > > > I hate that they can't give me a prognosis> > > > >> > > > > I hate having to worry about every little thing.> > > > >> > > > > I hate that I can't just get on an do stuff> > > > >> > > > > I hate the idea that I might not see my baby grow up.> > > > >> > > > > I hate that she's got to live life with a mum that isn't > firing > > on> > > > all> > > > > cylinders.> > > > >> > > > > I hate that I have to curtail one of my hobbies.> > > > >> > > > > I hate that I have to plan going out so that I don't run out > of > > O2> > > > >> > > > > I've tried to talk to Rob, but I end up 'pulling my self > > together'> > > > and> > > > > saying 'don't mind me, I'm fine really' And I'm doing this > not > > to> > > > upset> > > > > him too much. I don't know if he really knows the full> > > > implications of> > > > > PF, and I don't know how to bring it up.> > > > >> > > > > But I'm not Ok right now.> > > > >> > > > > I want to scream and shout and rage at the unfairness of it > all> > > > (except> > > > > that I'd get too out of breath [8-|] I can't even have a damn > > good> > > > > laugh at anything as it makes me cough too much [] )> > > > >> > > > > My father is having a second op following problems with a hip> > > > > replacement, and I was his main carer, (frankly my brother is> > > > useless> > > > > and selfish when it comes to looking after dad, happy to > borrow > > dads> > > > > car, but not so good at running errands) so I'm now worrying > at > > how> > > > he's> > > > > going to cope> > > > >> > > > > And to top everything I have a wisdom tooth causing me lots of> > > > problems,> > > > > it started last night, so I won't get to a dentist until at > > least> > > > > tomorrow and I need to see a doctor tomorrow as I'm starting > to > > get> > > > a> > > > > cough as well [8-|]> > > > >> > > > > Right now, I've just had enough and I want to step out of my > > body> > > > for a> > > > > little while and hop into someone elses while it get's on > with > > it.> > > > >> > > >> > >> >>

[Guest guest]

is proof that insanity is the nearest thing to genius....lol

Now, I translate and follow her Aussie Brain. Kettle of Fish didn't

surprise me at all. I do wonder about about a granddaughter being

trained to be a future (oh she's got to love it). But, only

could have worked Jack and Jill into the answer.

I also reaffirm her bollocks comment on protecting partners. I did

it....8 years never a fight...we protected each other. We were great

at sharing the good but not ever the bad.

The new me says complete openness and honesty of thoughts and

feelings. Why does this board work so well? Because we share

everything. We laugh, we vent, we cry, we feel pain together. We

don't hold back. Yet, with those closest to us offline we feel that

need. Its not fair to us or the other person nor healthy to either.

I don't know how could have handled suddenly finding out I'd

had a terminal disease for some years and was not dying. I think

though she's handling the truth very well and if she needs help she

can talk to her counselor about it. Furthermore, when and if she

faces decisions on me, if I'm incapable, she has my counselor to

support and confirm her decisions. But, she's being allowed to go

through the process.

I have friends its more difficult for. But, I'm not going to live

falsely nor pretend. Better they adjust over time than face it all at

once. One in particular kept saying " you're going to beat this. " I

had to explain the facts more than once. But, our friendship was

built on honesty and openness and we both still need the friendship

so this was way too big a topic to start not being honest about.

's comments on her granddaughter asking questions and discussing.

Weren't we all better when we were kids and started learning too many

rules (well, except some like ). It's like Kaleb. While we all

hope and pray for Tina. He understands...not fully, but some. And, if

he can know he can lay in bed with his mother and ask questions and

bring up the subject, he doesn't have to suppress sadness or anger.

Its when we learn to say the " right " or " safe " or " politically

correct " things that we so get into trouble because the emotions and

feelings are all there, regardless of how we try to suppress them.

From experience, I can tell you that you don't want to deal with how

they all come out at once after suppressing them 55 years.

We've had others come on the board and talk about not having told

their mother or brother or whomever the full story. How would you

feel if they had the problem and hid part of it from you? Now you

can't be sure they will accept it well, but you can only do your part

of communication. I think of a recent example here. What if we'd all

ignored the obvious and not said a word to Tammy about smoking? I

completely believe one thing that brought her to us was wanting

support in quitting. We were open and honest. Some might have said

harsh. But, we have a new friend and she's going to beat the

addiction.

Literally, we are talking life and death and we've become much to

protective if we can't communicate about those subjects with those

who mean the most to us. The safe subjects aren't the ones that are

most important in life.

> >

> >

> > I'm feeling scared, guilty, worried, down

> >

> > I hate what is happening to me

> >

> > I hate that there is no cure

> >

> > I hate that they can't give me a prognosis

> >

> > I hate having to worry about every little thing.

> >

> > I hate that I can't just get on an do stuff

> >

> > I hate the idea that I might not see my baby grow up.

> >

> > I hate that she's got to live life with a mum that isn't firing

on all

> > cylinders.

> >

> > I hate that I have to curtail one of my hobbies.

> >

> > I hate that I have to plan going out so that I don't run out of

O2

> >

> > I've tried to talk to Rob, but I end up 'pulling my self

together' and

> > saying 'don't mind me, I'm fine really' And I'm doing this not

to upset

> > him too much. I don't know if he really knows the full

implications of

> > PF, and I don't know how to bring it up.

> >

> > But I'm not Ok right now.

> >

> > I want to scream and shout and rage at the unfairness of it all

(except

> > that I'd get too out of breath [8-|] I can't even have a damn

good

> > laugh at anything as it makes me cough too much [] )

> >

> > My father is having a second op following problems with a hip

> > replacement, and I was his main carer, (frankly my brother is

useless

> > and selfish when it comes to looking after dad, happy to borrow

dads

> > car, but not so good at running errands) so I'm now worrying at

how he's

> > going to cope

> >

> > And to top everything I have a wisdom tooth causing me lots of

problems,

> > it started last night, so I won't get to a dentist until at

least

> > tomorrow and I need to see a doctor tomorrow as I'm starting to

get a

> > cough as well [8-|]

> >

> > Right now, I've just had enough and I want to step out of my

body for a

> > little while and hop into someone elses while it get's on with

it.

> >

>

[Guest guest]

Bruce... I really agree with what you write here. About "complete openness and honesty of thoughts and feelings" with board members. We do share everything, as you write it. But do we do it with others, as you wrote.

I also agree with NOT sharing offline not being fair to us or another person close to us.

I wonder if it's easy to 'get lost' in a support group and inadvertently close ourselves off to a loved one, or say here what we could say to a loved one?

I spend a lot of hours at my computer...not all here...and although Rich and I talk all the time and about everything, I'm going to spend less time here and more time with him.

You open a good subject Bruce. Thanks. Got me to thinking.

Communicating comes easy for me but I know that's not true for everyone. I'm hoping this new year will bring a determination to all of us to share as openly with others as we do here and not be afraid to ask for what we need.

We express our needs so openly here and yet we know none of us here can supply the needs for another through cyberspace. You know what I mean....needs beyond support, encouragement and understanding. And that's huge.

This Christmas was a real eye-opener for me. I asked myself, "If this is my last Christmas, how do I want to spend it"? And I spent it ,as I wanted to. You all know the story. And now I can say, "If this is my last year, what do I want it to be?" And that question brings me back to what you opened Bruce.

Make our time what we need, ask for what we want and don't back down if we don't get it the first time. Prioritize, take care of ourselves without guilt, don't do what we can't do. Say no when we need to, ask for help,

be lavish with thank yous and love. I want my last days to be filled with gratitude not resentment and to have that I'm responsible too. What about any of you?

Mama-Sher, ild 3-06, OR.Don't fret about tomorrow, God is already there!

Re: Not in a good place, I'm having a teenage tantrum

is proof that insanity is the nearest thing to genius....lolNow, I translate and follow her Aussie Brain. Kettle of Fish didn't surprise me at all. I do wonder about about a granddaughter being trained to be a future (oh she's got to love it). But, only could have worked Jack and Jill into the answer.I also reaffirm her bollocks comment on protecting partners. I did it....8 years never a fight...we protected each other. We were great at sharing the good but not ever the bad. The new me says complete openness and honesty of thoughts and feelings. Why does this board work so well? Because we share everything. We laugh, we vent, we cry, we feel pain together. We don't hold back. Yet, with those closest to us offline we feel that need. Its not fair to us or the other person nor healthy to either.I don't know how could have handled suddenly finding out I'd had a terminal disease for some years and was not dying. I think though she's handling the truth very well and if she needs help she can talk to her counselor about it. Furthermore, when and if she faces decisions on me, if I'm incapable, she has my counselor to support and confirm her decisions. But, she's being allowed to go through the process.I have friends its more difficult for. But, I'm not going to live falsely nor pretend. Better they adjust over time than face it all at once. One in particular kept saying "you're going to beat this." I had to explain the facts more than once. But, our friendship was built on honesty and openness and we both still need the friendship so this was way too big a topic to start not being honest about. 's comments on her granddaughter asking questions and discussing. Weren't we all better when we were kids and started learning too many rules (well, except some like ). It's like Kaleb. While we all hope and pray for Tina. He understands...not fully, but some. And, if he can know he can lay in bed with his mother and ask questions and bring up the subject, he doesn't have to suppress sadness or anger. Its when we learn to say the "right" or "safe" or "politically correct" things that we so get into trouble because the emotions and feelings are all there, regardless of how we try to suppress them. From experience, I can tell you that you don't want to deal with how they all come out at once after suppressing them 55 years.We've had others come on the board and talk about not having told their mother or brother or whomever the full story. How would you feel if they had the problem and hid part of it from you? Now you can't be sure they will accept it well, but you can only do your part of communication. I think of a recent example here. What if we'd all ignored the obvious and not said a word to Tammy about smoking? I completely believe one thing that brought her to us was wanting support in quitting. We were open and honest. Some might have said harsh. But, we have a new friend and she's going to beat the addiction. Literally, we are talking life and death and we've become much to protective if we can't communicate about those subjects with those who mean the most to us. The safe subjects aren't the ones that are most important in life.> >> > > > I'm feeling scared, guilty, worried, down> > > > I hate what is happening to me> > > > I hate that there is no cure> > > > I hate that they can't give me a prognosis> > > > I hate having to worry about every little thing.> > > > I hate that I can't just get on an do stuff> > > > I hate the idea that I might not see my baby grow up.> > > > I hate that she's got to live life with a mum that isn't firing on all> > cylinders.> > > > I hate that I have to curtail one of my hobbies.> > > > I hate that I have to plan going out so that I don't run out of O2> > > > I've tried to talk to Rob, but I end up 'pulling my self together' and> > saying 'don't mind me, I'm fine really' And I'm doing this not to upset> > him too much. I don't know if he really knows the full implications of> > PF, and I don't know how to bring it up.> > > > But I'm not Ok right now.> > > > I want to scream and shout and rage at the unfairness of it all (except> > that I'd get too out of breath [8-|] I can't even have a damn good> > laugh at anything as it makes me cough too much [] )> > > > My father is having a second op following problems with a hip> > replacement, and I was his main carer, (frankly my brother is useless> > and selfish when it comes to looking after dad, happy to borrow dads> > car, but not so good at running errands) so I'm now worrying at how he's> > going to cope> > > > And to top everything I have a wisdom tooth causing me lots of problems,> > it started last night, so I won't get to a dentist until at least> > tomorrow and I need to see a doctor tomorrow as I'm starting to get a> > cough as well [8-|]> > > > Right now, I've just had enough and I want to step out of my body for a> > little while and hop into someone elses while it get's on with it.> >>

[Guest guest]

Bruce... I really agree with what you write here. About "complete openness and honesty of thoughts and feelings" with board members. We do share everything, as you write it. But do we do it with others, as you wrote.

I also agree with NOT sharing offline not being fair to us or another person close to us.

I wonder if it's easy to 'get lost' in a support group and inadvertently close ourselves off to a loved one, or say here what we could say to a loved one?

I spend a lot of hours at my computer...not all here...and although Rich and I talk all the time and about everything, I'm going to spend less time here and more time with him.

You open a good subject Bruce. Thanks. Got me to thinking.

Communicating comes easy for me but I know that's not true for everyone. I'm hoping this new year will bring a determination to all of us to share as openly with others as we do here and not be afraid to ask for what we need.

We express our needs so openly here and yet we know none of us here can supply the needs for another through cyberspace. You know what I mean....needs beyond support, encouragement and understanding. And that's huge.

This Christmas was a real eye-opener for me. I asked myself, "If this is my last Christmas, how do I want to spend it"? And I spent it ,as I wanted to. You all know the story. And now I can say, "If this is my last year, what do I want it to be?" And that question brings me back to what you opened Bruce.

Make our time what we need, ask for what we want and don't back down if we don't get it the first time. Prioritize, take care of ourselves without guilt, don't do what we can't do. Say no when we need to, ask for help,

be lavish with thank yous and love. I want my last days to be filled with gratitude not resentment and to have that I'm responsible too. What about any of you?

Mama-Sher, ild 3-06, OR.Don't fret about tomorrow, God is already there!

Re: Not in a good place, I'm having a teenage tantrum

is proof that insanity is the nearest thing to genius....lolNow, I translate and follow her Aussie Brain. Kettle of Fish didn't surprise me at all. I do wonder about about a granddaughter being trained to be a future (oh she's got to love it). But, only could have worked Jack and Jill into the answer.I also reaffirm her bollocks comment on protecting partners. I did it....8 years never a fight...we protected each other. We were great at sharing the good but not ever the bad. The new me says complete openness and honesty of thoughts and feelings. Why does this board work so well? Because we share everything. We laugh, we vent, we cry, we feel pain together. We don't hold back. Yet, with those closest to us offline we feel that need. Its not fair to us or the other person nor healthy to either.I don't know how could have handled suddenly finding out I'd had a terminal disease for some years and was not dying. I think though she's handling the truth very well and if she needs help she can talk to her counselor about it. Furthermore, when and if she faces decisions on me, if I'm incapable, she has my counselor to support and confirm her decisions. But, she's being allowed to go through the process.I have friends its more difficult for. But, I'm not going to live falsely nor pretend. Better they adjust over time than face it all at once. One in particular kept saying "you're going to beat this." I had to explain the facts more than once. But, our friendship was built on honesty and openness and we both still need the friendship so this was way too big a topic to start not being honest about. 's comments on her granddaughter asking questions and discussing. Weren't we all better when we were kids and started learning too many rules (well, except some like ). It's like Kaleb. While we all hope and pray for Tina. He understands...not fully, but some. And, if he can know he can lay in bed with his mother and ask questions and bring up the subject, he doesn't have to suppress sadness or anger. Its when we learn to say the "right" or "safe" or "politically correct" things that we so get into trouble because the emotions and feelings are all there, regardless of how we try to suppress them. From experience, I can tell you that you don't want to deal with how they all come out at once after suppressing them 55 years.We've had others come on the board and talk about not having told their mother or brother or whomever the full story. How would you feel if they had the problem and hid part of it from you? Now you can't be sure they will accept it well, but you can only do your part of communication. I think of a recent example here. What if we'd all ignored the obvious and not said a word to Tammy about smoking? I completely believe one thing that brought her to us was wanting support in quitting. We were open and honest. Some might have said harsh. But, we have a new friend and she's going to beat the addiction. Literally, we are talking life and death and we've become much to protective if we can't communicate about those subjects with those who mean the most to us. The safe subjects aren't the ones that are most important in life.> >> > > > I'm feeling scared, guilty, worried, down> > > > I hate what is happening to me> > > > I hate that there is no cure> > > > I hate that they can't give me a prognosis> > > > I hate having to worry about every little thing.> > > > I hate that I can't just get on an do stuff> > > > I hate the idea that I might not see my baby grow up.> > > > I hate that she's got to live life with a mum that isn't firing on all> > cylinders.> > > > I hate that I have to curtail one of my hobbies.> > > > I hate that I have to plan going out so that I don't run out of O2> > > > I've tried to talk to Rob, but I end up 'pulling my self together' and> > saying 'don't mind me, I'm fine really' And I'm doing this not to upset> > him too much. I don't know if he really knows the full implications of> > PF, and I don't know how to bring it up.> > > > But I'm not Ok right now.> > > > I want to scream and shout and rage at the unfairness of it all (except> > that I'd get too out of breath [8-|] I can't even have a damn good> > laugh at anything as it makes me cough too much [] )> > > > My father is having a second op following problems with a hip> > replacement, and I was his main carer, (frankly my brother is useless> > and selfish when it comes to looking after dad, happy to borrow dads> > car, but not so good at running errands) so I'm now worrying at how he's> > going to cope> > > > And to top everything I have a wisdom tooth causing me lots of problems,> > it started last night, so I won't get to a dentist until at least> > tomorrow and I need to see a doctor tomorrow as I'm starting to get a> > cough as well [8-|]> > > > Right now, I've just had enough and I want to step out of my body for a> > little while and hop into someone elses while it get's on with it.> >>

[Guest guest]

I'm fwd this post to the group again. I thought it would spark a reply...

Re: Not in a good place, I'm having a teenage tantrum

is proof that insanity is the nearest thing to genius....lolNow, I translate and follow her Aussie Brain. Kettle of Fish didn't surprise me at all. I do wonder about about a granddaughter being trained to be a future (oh she's got to love it). But, only could have worked Jack and Jill into the answer.I also reaffirm her bollocks comment on protecting partners. I did it....8 years never a fight...we protected each other. We were great at sharing the good but not ever the bad. The new me says complete openness and honesty of thoughts and feelings. Why does this board work so well? Because we share everything. We laugh, we vent, we cry, we feel pain together. We don't hold back. Yet, with those closest to us offline we feel that need. Its not fair to us or the other person nor healthy to either.I don't know how could have handled suddenly finding out I'd had a terminal disease for some years and was not dying. I think though she's handling the truth very well and if she needs help she can talk to her counselor about it. Furthermore, when and if she faces decisions on me, if I'm incapable, she has my counselor to support and confirm her decisions. But, she's being allowed to go through the process.I have friends its more difficult for. But, I'm not going to live falsely nor pretend. Better they adjust over time than face it all at once. One in particular kept saying "you're going to beat this." I had to explain the facts more than once. But, our friendship was built on honesty and openness and we both still need the friendship so this was way too big a topic to start not being honest about. 's comments on her granddaughter asking questions and discussing. Weren't we all better when we were kids and started learning too many rules (well, except some like ). It's like Kaleb. While we all hope and pray for Tina. He understands...not fully, but some. And, if he can know he can lay in bed with his mother and ask questions and bring up the subject, he doesn't have to suppress sadness or anger. Its when we learn to say the "right" or "safe" or "politically correct" things that we so get into trouble because the emotions and feelings are all there, regardless of how we try to suppress them. From experience, I can tell you that you don't want to deal with how they all come out at once after suppressing them 55 years.We've had others come on the board and talk about not having told their mother or brother or whomever the full story. How would you feel if they had the problem and hid part of it from you? Now you can't be sure they will accept it well, but you can only do your part of communication. I think of a recent example here. What if we'd all ignored the obvious and not said a word to Tammy about smoking? I completely believe one thing that brought her to us was wanting support in quitting. We were open and honest. Some might have said harsh. But, we have a new friend and she's going to beat the addiction. Literally, we are talking life and death and we've become much to protective if we can't communicate about those subjects with those who mean the most to us. The safe subjects aren't the ones that are most important in life.> >> > > > I'm feeling scared, guilty, worried, down> > > > I hate what is happening to me> > > > I hate that there is no cure> > > > I hate that they can't give me a prognosis> > > > I hate having to worry about every little thing.> > > > I hate that I can't just get on an do stuff> > > > I hate the idea that I might not see my baby grow up.> > > > I hate that she's got to live life with a mum that isn't firing on all> > cylinders.> > > > I hate that I have to curtail one of my hobbies.> > > > I hate that I have to plan going out so that I don't run out of O2> > > > I've tried to talk to Rob, but I end up 'pulling my self together' and> > saying 'don't mind me, I'm fine really' And I'm doing this not to upset> > him too much. I don't know if he really knows the full implications of> > PF, and I don't know how to bring it up.> > > > But I'm not Ok right now.> > > > I want to scream and shout and rage at the unfairness of it all (except> > that I'd get too out of breath [8-|] I can't even have a damn good> > laugh at anything as it makes me cough too much [] )> > > > My father is having a second op following problems with a hip> > replacement, and I was his main carer, (frankly my brother is useless> > and selfish when it comes to looking after dad, happy to borrow dads> > car, but not so good at running errands) so I'm now worrying at how he's> > going to cope> > > > And to top everything I have a wisdom tooth causing me lots of problems,> > it started last night, so I won't get to a dentist until at least> > tomorrow and I need to see a doctor tomorrow as I'm starting to get a> > cough as well [8-|]> > > > Right now, I've just had enough and I want to step out of my body for a> > little while and hop into someone elses while it get's on with it.> >>

[Guest guest]

SHER

I don't think its the board or support groups. In fact, I think they

help break the barrier. I believe we learn, we are trained, to

protect others to say what is safe, to be politically correct. Some

of us are more hesitant than others. We avoid unpleasant subjects.

Societal rules and personal barriers we set suck. Why can't we just

say whats on our minds? Well, I was taught proper behavior. Vastly

overrated. No more for me. I'm going to express feelings. If I can't

be honest with someone then I'm going to talk to someone else. I've

shared very private things with Sher and if I was there in person the

new me would share the same. It adds substance. When she called me

yesterday it was special...personal...meaningful because we have

shared matters of importance and substance. Now we also talked about

Rosebud and my Beanie Babies.

There's not enough true communication in the world, not enough

hugging, not enough kissing, not enough touching. We observe life

sometimes more than we live it. I'm now completely honest with my

friends. I was up until 2:30 this morning chatting with one so dear

to me. We talked about things in her life she's never shared with

anyone outside her family. We can help each other because we have no

barriers. Who builds all these walls? Society? Us? But we're so close

that I could tell from the first words she typed last night that it

was a bad night for her. I knew it would be a while before she opened

up. She cried a lot. But when we finished she knew still that my love

for her was unconditional and I think she believed there was hope

that she didn't when we started....hope for her happiness.

I'm afraid we lead rather shallow lives because they center on

actions and thoughts often more than our deepest feelings. Until you

feel comfortable sharing your strongest fear, your best dream, your

wildest fantasy, what you're most proud of, and the one thing in your

life you're most ashamed of, then you haven't come to a complete and

total openness whether its with your spouse or a friend.

We talk about deep dark secrets. Well, I'm sorry.....everything is

part of who I am and how I got here. So, I'm not hiding anything. I

didn't know the value of expressing emotions and so I never really

lived. I do now and I have friendships I never imagined. And, its not

based on an image or who I wish I was or anything else.

I ask any of you who have been parents. Have you ever said to your

kids, you can talk to me about anything? Did you mean it? Really

anything? Without you jumping all over them that they would even

consider such a thing? Can you talk to your spouse about anything?

Why not?

I don't spend a lot of time thinking or talking about dying. But,

those in my life all know I have a terminal disease, nothing held

back. They know how I feel about it. OMG, I know they are here for

me.

I know this is one rambling post, but I do so think we lose a lot of

life because we can't communicate freely. We get so bogged down in

the things that are trivial and not those that are important.

No one here knows my favorite color...isn't that one of those

standard get acquainted questions? Don't think any of my friends or

family does. But every one in my life and here knows the disease I

have today and know that I've been through rough times with

depression and anxiety. And they've still embraced me, not run away.

I didn't know that was possible before.

How many of you have seen a psychiatrist or a counselor but felt you

couldn't tell friends, some sense of shame or fear they'd think less

of you? Eagleton had to withdraw as a candidate for Vice

President of the US in 1972 because he'd seen as psychiatrist. I'm

more inclined to agree with his opponent, Spiro Agnew, who said " that

shouldn't be an issue. He was far more worried about all those in

Washington who hadn't seen one. "

So we're conditioned. I've revolted against the conditioning. Sher

either has or it never took on her.

> > >

> > >

> > > I'm feeling scared, guilty, worried, down

> > >

> > > I hate what is happening to me

> > >

> > > I hate that there is no cure

> > >

> > > I hate that they can't give me a prognosis

> > >

> > > I hate having to worry about every little thing.

> > >

> > > I hate that I can't just get on an do stuff

> > >

> > > I hate the idea that I might not see my baby grow up.

> > >

> > > I hate that she's got to live life with a mum that isn't

firing

> on all

> > > cylinders.

> > >

> > > I hate that I have to curtail one of my hobbies.

> > >

> > > I hate that I have to plan going out so that I don't run out

of

> O2

> > >

> > > I've tried to talk to Rob, but I end up 'pulling my self

> together' and

> > > saying 'don't mind me, I'm fine really' And I'm doing this

not

> to upset

> > > him too much. I don't know if he really knows the full

> implications of

> > > PF, and I don't know how to bring it up.

> > >

> > > But I'm not Ok right now.

> > >

> > > I want to scream and shout and rage at the unfairness of it

all

> (except

> > > that I'd get too out of breath [8-|] I can't even have a damn

> good

> > > laugh at anything as it makes me cough too much [] )

> > >

> > > My father is having a second op following problems with a hip

> > > replacement, and I was his main carer, (frankly my brother is

> useless

> > > and selfish when it comes to looking after dad, happy to

borrow

> dads

> > > car, but not so good at running errands) so I'm now worrying

at

> how he's

> > > going to cope

> > >

> > > And to top everything I have a wisdom tooth causing me lots

of

> problems,

> > > it started last night, so I won't get to a dentist until at

> least

> > > tomorrow and I need to see a doctor tomorrow as I'm starting

to

> get a

> > > cough as well [8-|]

> > >

> > > Right now, I've just had enough and I want to step out of my

> body for a

> > > little while and hop into someone elses while it get's on

with

> it.

> > >

> >

>

[Guest guest]

SHER

I don't think its the board or support groups. In fact, I think they

help break the barrier. I believe we learn, we are trained, to

protect others to say what is safe, to be politically correct. Some

of us are more hesitant than others. We avoid unpleasant subjects.

Societal rules and personal barriers we set suck. Why can't we just

say whats on our minds? Well, I was taught proper behavior. Vastly

overrated. No more for me. I'm going to express feelings. If I can't

be honest with someone then I'm going to talk to someone else. I've

shared very private things with Sher and if I was there in person the

new me would share the same. It adds substance. When she called me

yesterday it was special...personal...meaningful because we have

shared matters of importance and substance. Now we also talked about

Rosebud and my Beanie Babies.

There's not enough true communication in the world, not enough

hugging, not enough kissing, not enough touching. We observe life

sometimes more than we live it. I'm now completely honest with my

friends. I was up until 2:30 this morning chatting with one so dear

to me. We talked about things in her life she's never shared with

anyone outside her family. We can help each other because we have no

barriers. Who builds all these walls? Society? Us? But we're so close

that I could tell from the first words she typed last night that it

was a bad night for her. I knew it would be a while before she opened

up. She cried a lot. But when we finished she knew still that my love

for her was unconditional and I think she believed there was hope

that she didn't when we started....hope for her happiness.

I'm afraid we lead rather shallow lives because they center on

actions and thoughts often more than our deepest feelings. Until you

feel comfortable sharing your strongest fear, your best dream, your

wildest fantasy, what you're most proud of, and the one thing in your

life you're most ashamed of, then you haven't come to a complete and

total openness whether its with your spouse or a friend.

We talk about deep dark secrets. Well, I'm sorry.....everything is

part of who I am and how I got here. So, I'm not hiding anything. I

didn't know the value of expressing emotions and so I never really

lived. I do now and I have friendships I never imagined. And, its not

based on an image or who I wish I was or anything else.

I ask any of you who have been parents. Have you ever said to your

kids, you can talk to me about anything? Did you mean it? Really

anything? Without you jumping all over them that they would even

consider such a thing? Can you talk to your spouse about anything?

Why not?

I don't spend a lot of time thinking or talking about dying. But,

those in my life all know I have a terminal disease, nothing held

back. They know how I feel about it. OMG, I know they are here for

me.

I know this is one rambling post, but I do so think we lose a lot of

life because we can't communicate freely. We get so bogged down in

the things that are trivial and not those that are important.

No one here knows my favorite color...isn't that one of those

standard get acquainted questions? Don't think any of my friends or

family does. But every one in my life and here knows the disease I

have today and know that I've been through rough times with

depression and anxiety. And they've still embraced me, not run away.

I didn't know that was possible before.

How many of you have seen a psychiatrist or a counselor but felt you

couldn't tell friends, some sense of shame or fear they'd think less

of you? Eagleton had to withdraw as a candidate for Vice

President of the US in 1972 because he'd seen as psychiatrist. I'm

more inclined to agree with his opponent, Spiro Agnew, who said " that

shouldn't be an issue. He was far more worried about all those in

Washington who hadn't seen one. "

So we're conditioned. I've revolted against the conditioning. Sher

either has or it never took on her.

> > >

> > >

> > > I'm feeling scared, guilty, worried, down

> > >

> > > I hate what is happening to me

> > >

> > > I hate that there is no cure

> > >

> > > I hate that they can't give me a prognosis

> > >

> > > I hate having to worry about every little thing.

> > >

> > > I hate that I can't just get on an do stuff

> > >

> > > I hate the idea that I might not see my baby grow up.

> > >

> > > I hate that she's got to live life with a mum that isn't

firing

> on all

> > > cylinders.

> > >

> > > I hate that I have to curtail one of my hobbies.

> > >

> > > I hate that I have to plan going out so that I don't run out

of

> O2

> > >

> > > I've tried to talk to Rob, but I end up 'pulling my self

> together' and

> > > saying 'don't mind me, I'm fine really' And I'm doing this

not

> to upset

> > > him too much. I don't know if he really knows the full

> implications of

> > > PF, and I don't know how to bring it up.

> > >

> > > But I'm not Ok right now.

> > >

> > > I want to scream and shout and rage at the unfairness of it

all

> (except

> > > that I'd get too out of breath [8-|] I can't even have a damn

> good

> > > laugh at anything as it makes me cough too much [] )

> > >

> > > My father is having a second op following problems with a hip

> > > replacement, and I was his main carer, (frankly my brother is

> useless

> > > and selfish when it comes to looking after dad, happy to

borrow

> dads

> > > car, but not so good at running errands) so I'm now worrying

at

> how he's

> > > going to cope

> > >

> > > And to top everything I have a wisdom tooth causing me lots

of

> problems,

> > > it started last night, so I won't get to a dentist until at

> least

> > > tomorrow and I need to see a doctor tomorrow as I'm starting

to

> get a

> > > cough as well [8-|]

> > >

> > > Right now, I've just had enough and I want to step out of my

> body for a

> > > little while and hop into someone elses while it get's on

with

> it.

> > >

> >

>

[Guest guest]

Bruce...thanks for this reply. Perhaps my usual open conversations are a little hard to take...I was told once that talking to me is like being hit with a stun gun! lol

Eleanor Roosevelt said: "We are the sum total of our lives".

My wish is that we here on the board would speak to loved ones off the board as candid as we do to each other.

Like you, I revolted and glad I have. I like the new me (well, the old me) much better.

Mama-Sher, ild 3-06, OR.Don't fret about tomorrow, God is already there!

Fw: Re: Not in a good place, I'm having a teenage tantrum

SHERI don't think its the board or support groups. In fact, I think they help break the barrier. I believe we learn, we are trained, to protect others to say what is safe, to be politically correct. Some of us are more hesitant than others. We avoid unpleasant subjects. Societal rules and personal barriers we set suck. Why can't we just say whats on our minds? Well, I was taught proper behavior. Vastly overrated. No more for me. I'm going to express feelings. If I can't be honest with someone then I'm going to talk to someone else. I've shared very private things with Sher and if I was there in person the new me would share the same. It adds substance. When she called me yesterday it was special...personal...meaningful because we have shared matters of importance and substance. Now we also talked about Rosebud and my Beanie Babies. There's not enough true communication in the world, not enough hugging, not enough kissing, not enough touching. We observe life sometimes more than we live it. I'm now completely honest with my friends. I was up until 2:30 this morning chatting with one so dear to me. We talked about things in her life she's never shared with anyone outside her family. We can help each other because we have no barriers. Who builds all these walls? Society? Us? But we're so close that I could tell from the first words she typed last night that it was a bad night for her. I knew it would be a while before she opened up. She cried a lot. But when we finished she knew still that my love for her was unconditional and I think she believed there was hope that she didn't when we started....hope for her happiness.I'm afraid we lead rather shallow lives because they center on actions and thoughts often more than our deepest feelings. Until you feel comfortable sharing your strongest fear, your best dream, your wildest fantasy, what you're most proud of, and the one thing in your life you're most ashamed of, then you haven't come to a complete and total openness whether its with your spouse or a friend.We talk about deep dark secrets. Well, I'm sorry.....everything is part of who I am and how I got here. So, I'm not hiding anything. I didn't know the value of expressing emotions and so I never really lived. I do now and I have friendships I never imagined. And, its not based on an image or who I wish I was or anything else. I ask any of you who have been parents. Have you ever said to your kids, you can talk to me about anything? Did you mean it? Really anything? Without you jumping all over them that they would even consider such a thing? Can you talk to your spouse about anything? Why not?I don't spend a lot of time thinking or talking about dying. But, those in my life all know I have a terminal disease, nothing held back. They know how I feel about it. OMG, I know they are here for me. I know this is one rambling post, but I do so think we lose a lot of life because we can't communicate freely. We get so bogged down in the things that are trivial and not those that are important. No one here knows my favorite color...isn't that one of those standard get acquainted questions? Don't think any of my friends or family does. But every one in my life and here knows the disease I have today and know that I've been through rough times with depression and anxiety. And they've still embraced me, not run away. I didn't know that was possible before. How many of you have seen a psychiatrist or a counselor but felt you couldn't tell friends, some sense of shame or fear they'd think less of you? Eagleton had to withdraw as a candidate for Vice President of the US in 1972 because he'd seen as psychiatrist. I'm more inclined to agree with his opponent, Spiro Agnew, who said "that shouldn't be an issue. He was far more worried about all those in Washington who hadn't seen one." So we're conditioned. I've revolted against the conditioning. Sher either has or it never took on her. > > >> > > > > > I'm feeling scared, guilty, worried, down> > > > > > I hate what is happening to me> > > > > > I hate that there is no cure> > > > > > I hate that they can't give me a prognosis> > > > > > I hate having to worry about every little thing.> > > > > > I hate that I can't just get on an do stuff> > > > > > I hate the idea that I might not see my baby grow up.> > > > > > I hate that she's got to live life with a mum that isn't firing > on all> > > cylinders.> > > > > > I hate that I have to curtail one of my hobbies.> > > > > > I hate that I have to plan going out so that I don't run out of > O2> > > > > > I've tried to talk to Rob, but I end up 'pulling my self > together' and> > > saying 'don't mind me, I'm fine really' And I'm doing this not > to upset> > > him too much. I don't know if he really knows the full > implications of> > > PF, and I don't know how to bring it up.> > > > > > But I'm not Ok right now.> > > > > > I want to scream and shout and rage at the unfairness of it all > (except> > > that I'd get too out of breath [8-|] I can't even have a damn > good> > > laugh at anything as it makes me cough too much [] )> > > > > > My father is having a second op following problems with a hip> > > replacement, and I was his main carer, (frankly my brother is > useless> > > and selfish when it comes to looking after dad, happy to borrow > dads> > > car, but not so good at running errands) so I'm now worrying at > how he's> > > going to cope> > > > > > And to top everything I have a wisdom tooth causing me lots of > problems,> > > it started last night, so I won't get to a dentist until at > least> > > tomorrow and I need to see a doctor tomorrow as I'm starting to > get a> > > cough as well [8-|]> > > > > > Right now, I've just had enough and I want to step out of my > body for a> > > little while and hop into someone elses while it get's on with > it.> > >> >>

[Guest guest]

You are like a stun gun. You and I had differences that you may not

even remember and we discussed and resolved in private one time long

ago. And, look where we are now. I adore you and you adore me and I

don't even need to be told to know it.

lol

> > > >

> > > >

> > > > I'm feeling scared, guilty, worried, down

> > > >

> > > > I hate what is happening to me

> > > >

> > > > I hate that there is no cure

> > > >

> > > > I hate that they can't give me a prognosis

> > > >

> > > > I hate having to worry about every little thing.

> > > >

> > > > I hate that I can't just get on an do stuff

> > > >

> > > > I hate the idea that I might not see my baby grow up.

> > > >

> > > > I hate that she's got to live life with a mum that isn't

> firing

> > on all

> > > > cylinders.

> > > >

> > > > I hate that I have to curtail one of my hobbies.

> > > >

> > > > I hate that I have to plan going out so that I don't run

out

> of

> > O2

> > > >

> > > > I've tried to talk to Rob, but I end up 'pulling my self

> > together' and

> > > > saying 'don't mind me, I'm fine really' And I'm doing this

> not

> > to upset

> > > > him too much. I don't know if he really knows the full

> > implications of

> > > > PF, and I don't know how to bring it up.

> > > >

> > > > But I'm not Ok right now.

> > > >

> > > > I want to scream and shout and rage at the unfairness of it

> all

> > (except

> > > > that I'd get too out of breath [8-|] I can't even have a

damn

> > good

> > > > laugh at anything as it makes me cough too much [] )

> > > >

> > > > My father is having a second op following problems with a

hip

> > > > replacement, and I was his main carer, (frankly my brother

is

> > useless

> > > > and selfish when it comes to looking after dad, happy to

> borrow

> > dads

> > > > car, but not so good at running errands) so I'm now

worrying

> at

> > how he's

> > > > going to cope

> > > >

> > > > And to top everything I have a wisdom tooth causing me lots

> of

> > problems,

> > > > it started last night, so I won't get to a dentist until at

> > least

> > > > tomorrow and I need to see a doctor tomorrow as I'm

starting

> to

> > get a

> > > > cough as well [8-|]

> > > >

> > > > Right now, I've just had enough and I want to step out of

my

> > body for a

> > > > little while and hop into someone elses while it get's on

> with

> > it.

> > > >

> > >

> >

>