RE: ((((((((((hugs)))))))))) to jamie re pissed

[Guest guest]

May, , , I have posted about this topic quite a bit. Seems

as if "chronic illness" acts like a friend and family

filter. The caring people " float" to the

top, understand or at least don't go into denial, and are there no

matter what.

Others ( including family member) have just disappeared from my life.

So called friends haven't called in months ( one friend of 40 years

just stopped calling after I couldn't do things on her schedule).We

don't get invited to get togethers as often . I can depend on those

staying people and that's OK for me.

Being scared on the inside is my daily situation...I put on " my other

face" whenever I go out and whenever I'm with people.

I realize that the O2 makes most of them very

uncomfortble...tough!!!!It keeps me going so they just have to deal!!

After I leave the party or lunch

or meeting the "real me" returns. I 've told my husband that I'm like

one of those inflatable dolls that people put in the passenger seat.

I'm defalted in the car on the way and get pumped up into the "

on display" when I get to my destination. I go back to deflated

as soon as I get back to the car!!!!

But I got there, had a good time being with people who care, and that's

the way I play this new life!!!

I'm no stronger than anyone else, I've learned some coping skills over

all my years (63)

.

I also cried about Judy and I don't really know her...I just know that

she has to be very strong and her family has to be strong for her.

She is in my prayers .

Z fibriotic NSIP/05

Z fibriotic NSIP/o5/PA

Potter, reader,carousel lover and

MomMom to Darah

“I’m gonna be iron like a lion in Zion”

Bob Marley

may wrote:

jamie

i'm so sorry for your situation.

i hate when people say things like 'you are such a strong person' -

its a cliche that they say to make themselves feel better. its

crap. people don't have any choice about most of the trials that

come their way. we only have a choice of how we deal with it.

because you deal with it bravely and with courage doesn't mean you

aren't bloody scared all the time. bravery and courage is nothing to

do with strength its abouts being scared and still facing things.

telling us about the feelings brought up by judy's transplant is

brave and honest and helpful to others. you are entitled to how you

feel and they have to be expressed.

our family and friends do have a choice to deal with us or embrace

denial. our husbands don't really do they - they are in it with us.

i am very impressed with andy even though he still won't let me talk

too deep. i figure he is doing as good as he can. he won't read

this group yet but he is getting more interested in my recaps of

everyone and has his favourites. yesterday i met an old work

colleague, who has a secondary cancer that can't be got rid of, and

andy stayed to say hallo to him but was uncomfortable. i reckon that

was good enough. he could have left before he arrived.

iain this friend and i talked about how everyone crosses the street

when they see you (metaphorically) and i had him in stitches telling

him about a reunion i went to a few weeks ago. i hadn't seen these

ex colleagues for years and really was going only to catch up with a

guy i used to be engaged to (he wasn't there in the end). anyway, i

hadn't thought about people asking me what i was doing now so i

wasn't prepared. so when asked i just blurted out that i had a 'wee

terminal lung condition but my death wasn't imminent'. well these

people all geared up for a fun night out were flabbergasted. they

were all ready to impress each other with how well they have climbed

up the career ladder. eventually one guy came to my rescue and said,

remember i had my heart attack, another said proudly i've got

fibromyalga. the people who were there to brag about their jobs just

didn't have anywhere to go.

my two sisters have been the worse - one even told me that her lung

function was as bad as mine whilst smoking a joint and running

upstairs with an armful of wet washing. my brother in australia

(with bronchiestasis) and my youngest brother have been wonderful and

have made up for all the rest. they haven't been perfect but they

don't avoid me or my topics.

my neice who lost her own mum when she was 15 has been the best and i

can't believe how often she puts me straight. i feel closer to her

and her sister than i do to my own daughter. we nursed my sister

together for the last 7 weeks of her battle with mesothelioma.

pauline was in another city and i went to stay for the duration. i

don't think there is anything more intimate than sharing that

experience. my neices again had no choice but to deal with it, but

only found the courage when time was running out. they needed me to

deal with all pauline's emotions.

i hope you feel better soon and return to having good times with your

children.

may

No virus found in this incoming message.

Checked by AVG Free Edition. Version: 7.5.484 / Virus Database: 269.12.6/971 - Release Date: 8/24/2007 2:59 PM

[Guest guest]

May, , , I have posted about this topic quite a bit. Seems

as if "chronic illness" acts like a friend and family

filter. The caring people " float" to the

top, understand or at least don't go into denial, and are there no

matter what.

Others ( including family member) have just disappeared from my life.

So called friends haven't called in months ( one friend of 40 years

just stopped calling after I couldn't do things on her schedule).We

don't get invited to get togethers as often . I can depend on those

staying people and that's OK for me.

Being scared on the inside is my daily situation...I put on " my other

face" whenever I go out and whenever I'm with people.

I realize that the O2 makes most of them very

uncomfortble...tough!!!!It keeps me going so they just have to deal!!

After I leave the party or lunch

or meeting the "real me" returns. I 've told my husband that I'm like

one of those inflatable dolls that people put in the passenger seat.

I'm defalted in the car on the way and get pumped up into the "

on display" when I get to my destination. I go back to deflated

as soon as I get back to the car!!!!

But I got there, had a good time being with people who care, and that's

the way I play this new life!!!

I'm no stronger than anyone else, I've learned some coping skills over

all my years (63)

.

I also cried about Judy and I don't really know her...I just know that

she has to be very strong and her family has to be strong for her.

She is in my prayers .

Z fibriotic NSIP/05

Z fibriotic NSIP/o5/PA

Potter, reader,carousel lover and

MomMom to Darah

“I’m gonna be iron like a lion in Zion”

Bob Marley

may wrote:

jamie

i'm so sorry for your situation.

i hate when people say things like 'you are such a strong person' -

its a cliche that they say to make themselves feel better. its

crap. people don't have any choice about most of the trials that

come their way. we only have a choice of how we deal with it.

because you deal with it bravely and with courage doesn't mean you

aren't bloody scared all the time. bravery and courage is nothing to

do with strength its abouts being scared and still facing things.

telling us about the feelings brought up by judy's transplant is

brave and honest and helpful to others. you are entitled to how you

feel and they have to be expressed.

our family and friends do have a choice to deal with us or embrace

denial. our husbands don't really do they - they are in it with us.

i am very impressed with andy even though he still won't let me talk

too deep. i figure he is doing as good as he can. he won't read

this group yet but he is getting more interested in my recaps of

everyone and has his favourites. yesterday i met an old work

colleague, who has a secondary cancer that can't be got rid of, and

andy stayed to say hallo to him but was uncomfortable. i reckon that

was good enough. he could have left before he arrived.

iain this friend and i talked about how everyone crosses the street

when they see you (metaphorically) and i had him in stitches telling

him about a reunion i went to a few weeks ago. i hadn't seen these

ex colleagues for years and really was going only to catch up with a

guy i used to be engaged to (he wasn't there in the end). anyway, i

hadn't thought about people asking me what i was doing now so i

wasn't prepared. so when asked i just blurted out that i had a 'wee

terminal lung condition but my death wasn't imminent'. well these

people all geared up for a fun night out were flabbergasted. they

were all ready to impress each other with how well they have climbed

up the career ladder. eventually one guy came to my rescue and said,

remember i had my heart attack, another said proudly i've got

fibromyalga. the people who were there to brag about their jobs just

didn't have anywhere to go.

my two sisters have been the worse - one even told me that her lung

function was as bad as mine whilst smoking a joint and running

upstairs with an armful of wet washing. my brother in australia

(with bronchiestasis) and my youngest brother have been wonderful and

have made up for all the rest. they haven't been perfect but they

don't avoid me or my topics.

my neice who lost her own mum when she was 15 has been the best and i

can't believe how often she puts me straight. i feel closer to her

and her sister than i do to my own daughter. we nursed my sister

together for the last 7 weeks of her battle with mesothelioma.

pauline was in another city and i went to stay for the duration. i

don't think there is anything more intimate than sharing that

experience. my neices again had no choice but to deal with it, but

only found the courage when time was running out. they needed me to

deal with all pauline's emotions.

i hope you feel better soon and return to having good times with your

children.

may

No virus found in this incoming message.

Checked by AVG Free Edition. Version: 7.5.484 / Virus Database: 269.12.6/971 - Release Date: 8/24/2007 2:59 PM

[Guest guest]

May, , , I have posted about this topic quite a bit. Seems

as if "chronic illness" acts like a friend and family

filter. The caring people " float" to the

top, understand or at least don't go into denial, and are there no

matter what.

Others ( including family member) have just disappeared from my life.

So called friends haven't called in months ( one friend of 40 years

just stopped calling after I couldn't do things on her schedule).We

don't get invited to get togethers as often . I can depend on those

staying people and that's OK for me.

Being scared on the inside is my daily situation...I put on " my other

face" whenever I go out and whenever I'm with people.

I realize that the O2 makes most of them very

uncomfortble...tough!!!!It keeps me going so they just have to deal!!

After I leave the party or lunch

or meeting the "real me" returns. I 've told my husband that I'm like

one of those inflatable dolls that people put in the passenger seat.

I'm defalted in the car on the way and get pumped up into the "

on display" when I get to my destination. I go back to deflated

as soon as I get back to the car!!!!

But I got there, had a good time being with people who care, and that's

the way I play this new life!!!

I'm no stronger than anyone else, I've learned some coping skills over

all my years (63)

.

I also cried about Judy and I don't really know her...I just know that

she has to be very strong and her family has to be strong for her.

She is in my prayers .

Z fibriotic NSIP/05

Z fibriotic NSIP/o5/PA

Potter, reader,carousel lover and

MomMom to Darah

“I’m gonna be iron like a lion in Zion”

Bob Marley

may wrote:

jamie

i'm so sorry for your situation.

i hate when people say things like 'you are such a strong person' -

its a cliche that they say to make themselves feel better. its

crap. people don't have any choice about most of the trials that

come their way. we only have a choice of how we deal with it.

because you deal with it bravely and with courage doesn't mean you

aren't bloody scared all the time. bravery and courage is nothing to

do with strength its abouts being scared and still facing things.

telling us about the feelings brought up by judy's transplant is

brave and honest and helpful to others. you are entitled to how you

feel and they have to be expressed.

our family and friends do have a choice to deal with us or embrace

denial. our husbands don't really do they - they are in it with us.

i am very impressed with andy even though he still won't let me talk

too deep. i figure he is doing as good as he can. he won't read

this group yet but he is getting more interested in my recaps of

everyone and has his favourites. yesterday i met an old work

colleague, who has a secondary cancer that can't be got rid of, and

andy stayed to say hallo to him but was uncomfortable. i reckon that

was good enough. he could have left before he arrived.

iain this friend and i talked about how everyone crosses the street

when they see you (metaphorically) and i had him in stitches telling

him about a reunion i went to a few weeks ago. i hadn't seen these

ex colleagues for years and really was going only to catch up with a

guy i used to be engaged to (he wasn't there in the end). anyway, i

hadn't thought about people asking me what i was doing now so i

wasn't prepared. so when asked i just blurted out that i had a 'wee

terminal lung condition but my death wasn't imminent'. well these

people all geared up for a fun night out were flabbergasted. they

were all ready to impress each other with how well they have climbed

up the career ladder. eventually one guy came to my rescue and said,

remember i had my heart attack, another said proudly i've got

fibromyalga. the people who were there to brag about their jobs just

didn't have anywhere to go.

my two sisters have been the worse - one even told me that her lung

function was as bad as mine whilst smoking a joint and running

upstairs with an armful of wet washing. my brother in australia

(with bronchiestasis) and my youngest brother have been wonderful and

have made up for all the rest. they haven't been perfect but they

don't avoid me or my topics.

my neice who lost her own mum when she was 15 has been the best and i

can't believe how often she puts me straight. i feel closer to her

and her sister than i do to my own daughter. we nursed my sister

together for the last 7 weeks of her battle with mesothelioma.

pauline was in another city and i went to stay for the duration. i

don't think there is anything more intimate than sharing that

experience. my neices again had no choice but to deal with it, but

only found the courage when time was running out. they needed me to

deal with all pauline's emotions.

i hope you feel better soon and return to having good times with your

children.

may

No virus found in this incoming message.

Checked by AVG Free Edition. Version: 7.5.484 / Virus Database: 269.12.6/971 - Release Date: 8/24/2007 2:59 PM

[Guest guest]

,

Thank you for your post. I have the "other person face" also. I act one way when I am with people and another when at home or especially alone. Most friends, who were really acquaintainces, have disappeared. I heard from them for a while, but now I am sure they just got tired of me being forever sick. We dont get invited to things anymore. What fun am I? i cough all the time, cant do the things that all our used to be friends do. I understand them not inviting us to things but it still hurts. I agree with you that people are uncomfortable with my oxygen. They dont know what to say and usuallyl will talk around me instead of to me. Everyone was really attentive when they all thought I was going to die soon but when I didnt, and I got better but not well, they just seemed to get tired of it. Even my kids act like they are tired of me being sick. They dont call very much and sometimes do not ask how I am feeling. I can count on my husband though. I am thankful for him and his faithfulness.

Thank you for posting your thoughts.

L

NIPF01/ph/06

Re: ((((((((((hugs)))))))))) to jamie re pissed

May, , , I have posted about this topic quite a bit. Seems as if "chronic illness" acts like a friend and familyfilter. The caring people " float" to the top, understand or at least don't go into denial, and are there no matter what.Others ( including family member) have just disappeared from my life. So called friends haven't called in months ( one friend of 40 years just stopped calling after I couldn't do things on her schedule).We don't get invited to get togethers as often . I can depend on those staying people and that's OK for me.Being scared on the inside is my daily situation...I put on " my other face" whenever I go out and whenever I'm with people. I realize that the O2 makes most of them very uncomfortble...tough!!!!It keeps me going so they just have to deal!! After I leave the party or lunchor meeting the "real me" returns. I 've told my husband that I'm like one of those inflatable dolls that people put in the passenger seat. I'm defalted in the car on the way and get pumped up into the " on display" when I get to my destination. I go back to deflated as soon as I get back to the car!!!!But I got there, had a good time being with people who care, and that's the way I play this new life!!!I'm no stronger than anyone else, I've learned some coping skills over all my years (63) . I also cried about Judy and I don't really know her...I just know that she has to be very strong and her family has to be strong for her.She is in my prayers .

Z fibriotic NSIP/o5/PA

Potter, reader,carousel lover and MomMom to Darah

“I’m gonna be iron like a lion in Zion” Bob Marleymay wrote:

jamiei'm so sorry for your situation. i hate when people say things like 'you are such a strong person' - its a cliche that they say to make themselves feel better. its crap. people don't have any choice about most of the trials that come their way. we only have a choice of how we deal with it. because you deal with it bravely and with courage doesn't mean you aren't bloody scared all the time. bravery and courage is nothing to do with strength its abouts being scared and still facing things.telling us about the feelings brought up by judy's transplant is brave and honest and helpful to others. you are entitled to how you feel and they have to be expressed. our family and friends do have a choice to deal with us or embrace denial. our husbands don't really do they - they are in it with us. i am very impressed with andy even though he still won't let me talk too deep. i figure he is doing as good as he can. he won't read this group yet but he is getting more interested in my recaps of everyone and has his favourites. yesterday i met an old work colleague, who has a secondary cancer that can't be got rid of, and andy stayed to say hallo to him but was uncomfortable. i reckon that was good enough. he could have left before he arrived. iain this friend and i talked about how everyone crosses the street when they see you (metaphorically) and i had him in stitches telling him about a reunion i went to a few weeks ago. i hadn't seen these ex colleagues for years and really was going only to catch up with a guy i used to be engaged to (he wasn't there in the end). anyway, i hadn't thought about people asking me what i was doing now so i wasn't prepared. so when asked i just blurted out that i had a 'wee terminal lung condition but my death wasn't imminent'. well these people all geared up for a fun night out were flabbergasted. they were all ready to impress each other with how well they have climbed up the career ladder. eventually one guy came to my rescue and said, remember i had my heart attack, another said proudly i've got fibromyalga. the people who were there to brag about their jobs just didn't have anywhere to go. my two sisters have been the worse - one even told me that her lung function was as bad as mine whilst smoking a joint and running upstairs with an armful of wet washing. my brother in australia (with bronchiestasis) and my youngest brother have been wonderful and have made up for all the rest. they haven't been perfect but they don't avoid me or my topics.my neice who lost her own mum when she was 15 has been the best and i can't believe how often she puts me straight. i feel closer to her and her sister than i do to my own daughter. we nursed my sister together for the last 7 weeks of her battle with mesothelioma. pauline was in another city and i went to stay for the duration. i don't think there is anything more intimate than sharing that experience. my neices again had no choice but to deal with it, but only found the courage when time was running out. they needed me to deal with all pauline's emotions. i hope you feel better soon and return to having good times with your children.may

No virus found in this incoming message.

Checked by AVG Free Edition. Version: 7.5.484 / Virus Database: 269.12.6/971 - Release Date: 8/24/2007 2:59 PM

[Guest guest]

, and all the others who posted

on this subject .

Thanks for the honest truth. I think many

of us who don’t post a lot feel the same way and have similar experiences

with friends and family.

Florida P.F. 04/06

From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of Lentz

Sent: Saturday, August 25, 2007

10:56 AM

To: Breathe-Support

Subject: Re:

((((((((((hugs)))))))))) to jamie re pissed

,

Thank you for your post. I have the " other person

face " also. I act one way when I am with people and another when at

home or especially alone. Most friends, who were really acquaintainces,

have disappeared. I heard from them for a while, but now I am sure they

just got tired of me being forever sick. We dont get invited to things

anymore. What fun am I? i cough all the time, cant do the things

that all our used to be friends do. I understand them not inviting us to

things but it still hurts. I agree with you that people are uncomfortable

with my oxygen. They dont know what to say and usuallyl will talk around

me instead of to me. Everyone was really attentive when they all thought I was

going to die soon but when I didnt, and I got better but not well, they just

seemed to get tired of it. Even my kids act like they are tired of me

being sick. They dont call very much and sometimes do not ask how I am

feeling. I can count on my husband though. I am thankful for him

and his faithfulness.

Thank you for posting your thoughts.

L

NIPF01/ph/06

Re:

((((((((((hugs)))))))))) to jamie re pissed

May, , , I have posted about this topic

quite a bit. Seems as if " chronic illness " acts like a

friend and family

filter. The

caring people " float " to the top, understand or at least don't go

into denial, and are there no matter what.

Others ( including family member) have just disappeared from my life. So

called friends haven't called in months ( one friend of 40 years just stopped

calling after I couldn't do things on her schedule).We don't get invited to get

togethers as often . I can depend on those staying people and that's OK for me.

Being scared on the inside is my daily situation...I put on "

my other face " whenever I go out and whenever I'm with people.

I realize that the O2 makes most of them very uncomfortble...tough!!!!It

keeps me going so they just have to deal!! After I leave the party or

lunch

or meeting the " real me " returns. I 've told my husband that

I'm like one of those inflatable dolls that people put in the passenger

seat. I'm defalted in the car on the way and get pumped up into the

" on display " when I get to my destination. I go back to

deflated as soon as I get back to the car!!!!

But I got there, had a good time being with people who care, and that's the way

I play this new life!!!

I'm no stronger than anyone else, I've learned some coping skills over all my

years (63)

.

I also cried about Judy and I don't really know her...I just know that she has

to be very strong and her family has to be strong for her.

She is in my prayers .

Z fibriotic NSIP/o5/PA

Potter, reader,carousel lover and MomMom

to Darah

“I’m

gonna be iron like a lion in Zion”

Bob Marley

may wrote:

jamie

i'm so sorry for your situation.

i hate when people say things like 'you are such a strong person' -

its a cliche that they say to make themselves feel better. its

crap. people don't have any choice about most of the trials that

come their way. we only have a choice of how we deal with it.

because you deal with it bravely and with courage doesn't mean you

aren't bloody scared all the time. bravery and courage is nothing to

do with strength its abouts being scared and still facing things.

telling us about the feelings brought up by judy's transplant is

brave and honest and helpful to others. you are entitled to how you

feel and they have to be expressed.

our family and friends do have a choice to deal with us or embrace

denial. our husbands don't really do they - they are in it with us.

i am very impressed with andy even though he still won't let me talk

too deep. i figure he is doing as good as he can. he won't read

this group yet but he is getting more interested in my recaps of

everyone and has his favourites. yesterday i met an old work

colleague, who has a secondary cancer that can't be got rid of, and

andy stayed to say hallo to him but was uncomfortable. i reckon that

was good enough. he could have left before he arrived.

iain this friend and i talked about how everyone crosses the street

when they see you (metaphorically) and i had him in stitches telling

him about a reunion i went to a few weeks ago. i hadn't seen these

ex colleagues for years and really was going only to catch up with a

guy i used to be engaged to (he wasn't there in the end). anyway, i

hadn't thought about people asking me what i was doing now so i

wasn't prepared. so when asked i just blurted out that i had a 'wee

terminal lung condition but my death wasn't imminent'. well these

people all geared up for a fun night out were flabbergasted. they

were all ready to impress each other with how well they have climbed

up the career ladder. eventually one guy came to my rescue and said,

remember i had my heart attack, another said proudly i've got

fibromyalga. the people who were there to brag about their jobs just

didn't have anywhere to go.

my two sisters have been the worse - one even told me that her lung

function was as bad as mine whilst smoking a joint and running

upstairs with an armful of wet washing. my brother in australia

(with bronchiestasis) and my youngest brother have been wonderful and

have made up for all the rest. they haven't been perfect but they

don't avoid me or my topics.

my neice who lost her own mum when she was 15 has been the best and i

can't believe how often she puts me straight. i feel closer to her

and her sister than i do to my own daughter. we nursed my sister

together for the last 7 weeks of her battle with mesothelioma.

pauline was in another city and i went to stay for the duration. i

don't think there is anything more intimate than sharing that

experience. my neices again had no choice but to deal with it, but

only found the courage when time was running out. they needed me to

deal with all pauline's emotions.

i hope you feel better soon and return to having good times with your

children.

may

size=4 width="90%" align=center>

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.484 / Virus Database: 269.12.6/971 - Release Date: 8/24/2007 2:59 PM