Re: Strange responses to knowledge of illness

[Guest guest]

Joyce How cruel!! maybe their not friends, but can't understand your son's reaction at all. Maybe send him a message that you also changed your will!!!! I've been lucky, maybe more than others. KS t-09-24-08

To: Breathe-Support Sent: Thursday, January 15, 2009 4:45:26 PMSubject: Strange responses to knowledge of illness

When I told a few friends and my son that I had an illness that was terminal some of them and my son responded with:Well, we all have to go sometime. Has anyone had someone say this to them and if so what do you say when they say that? It hurt me deeply when my son said that to me. And, it is such a cold thing to say.....it also hurt when my friends say it to me or as one said well, you are getting old you didn't expect to live to be 90 did you? (actually I did! LOL ). Joyce R. Prescott AZ PF Nov o8

[Guest guest]

Joyce How cruel!! maybe their not friends, but can't understand your son's reaction at all. Maybe send him a message that you also changed your will!!!! I've been lucky, maybe more than others. KS t-09-24-08

To: Breathe-Support Sent: Thursday, January 15, 2009 4:45:26 PMSubject: Strange responses to knowledge of illness

When I told a few friends and my son that I had an illness that was terminal some of them and my son responded with:Well, we all have to go sometime. Has anyone had someone say this to them and if so what do you say when they say that? It hurt me deeply when my son said that to me. And, it is such a cold thing to say.....it also hurt when my friends say it to me or as one said well, you are getting old you didn't expect to live to be 90 did you? (actually I did! LOL ). Joyce R. Prescott AZ PF Nov o8

[Guest guest]

Joyce How cruel!! maybe their not friends, but can't understand your son's reaction at all. Maybe send him a message that you also changed your will!!!! I've been lucky, maybe more than others. KS t-09-24-08

To: Breathe-Support Sent: Thursday, January 15, 2009 4:45:26 PMSubject: Strange responses to knowledge of illness

When I told a few friends and my son that I had an illness that was terminal some of them and my son responded with:Well, we all have to go sometime. Has anyone had someone say this to them and if so what do you say when they say that? It hurt me deeply when my son said that to me. And, it is such a cold thing to say.....it also hurt when my friends say it to me or as one said well, you are getting old you didn't expect to live to be 90 did you? (actually I did! LOL ). Joyce R. Prescott AZ PF Nov o8

[Guest guest]

Joyce, that was totally cruel and uncalled for. One little eye opener for them.. get a straw and put some cotton in it and tell them to hold their noses and breathe through it.. That is just an example for them. I just can't imagine. I am sorry. Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  When I told a few friends and my son that I had an illness that was terminal some of them and my son responded with:Well, we all have to go sometime. Has anyone had someone say this to them and if so what do you say when they say that? It hurt me deeply when my son said that to me. And, it is such a cold thing to say.....it also hurt when my friends say it to me or as one said well, you are getting old you didn't expect to live to be 90 did you? (actually I did! LOL ). Joyce R. Prescott AZ PF Nov o8

[Guest guest]

Joyce, that was totally cruel and uncalled for. One little eye opener for them.. get a straw and put some cotton in it and tell them to hold their noses and breathe through it.. That is just an example for them. I just can't imagine. I am sorry. Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  When I told a few friends and my son that I had an illness that was terminal some of them and my son responded with:Well, we all have to go sometime. Has anyone had someone say this to them and if so what do you say when they say that? It hurt me deeply when my son said that to me. And, it is such a cold thing to say.....it also hurt when my friends say it to me or as one said well, you are getting old you didn't expect to live to be 90 did you? (actually I did! LOL ). Joyce R. Prescott AZ PF Nov o8

[Guest guest]

Joyce, that was totally cruel and uncalled for. One little eye opener for them.. get a straw and put some cotton in it and tell them to hold their noses and breathe through it.. That is just an example for them. I just can't imagine. I am sorry. Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  When I told a few friends and my son that I had an illness that was terminal some of them and my son responded with:Well, we all have to go sometime. Has anyone had someone say this to them and if so what do you say when they say that? It hurt me deeply when my son said that to me. And, it is such a cold thing to say.....it also hurt when my friends say it to me or as one said well, you are getting old you didn't expect to live to be 90 did you? (actually I did! LOL ). Joyce R. Prescott AZ PF Nov o8

[Guest guest]

Joyce,

I'm sorry you have gotten such harsh responses! It is very odd how our

loved ones react. My parents and siblings were probably the most

positive. On the other hand, I've had to distance myself from a few

people who reacted harshly and didn't seem to care that they hurt me.

Sometimes the people who make those unexpected nasty remarks are trying

not to show how much they are hurting for you.

33 FL

IPF 1/06

>

> When I told a few friends and my son that I had an illness that was

> terminal some of them and my son responded with:Well, we all have to

go

> sometime. Has anyone had someone say this to them and if so what do

you

> say when they say that? It hurt me deeply when my son said that to

me.

> And, it is such a cold thing to say.....it also hurt when my friends

> say it to me or as one said well, you are getting old you didn't

expect

> to live to be 90 did you? (actually I did! LOL ). Joyce R. Prescott

AZ

> PF Nov o8

>

[Guest guest]

Joyce,

I'm sorry you have gotten such harsh responses! It is very odd how our

loved ones react. My parents and siblings were probably the most

positive. On the other hand, I've had to distance myself from a few

people who reacted harshly and didn't seem to care that they hurt me.

Sometimes the people who make those unexpected nasty remarks are trying

not to show how much they are hurting for you.

33 FL

IPF 1/06

>

> When I told a few friends and my son that I had an illness that was

> terminal some of them and my son responded with:Well, we all have to

go

> sometime. Has anyone had someone say this to them and if so what do

you

> say when they say that? It hurt me deeply when my son said that to

me.

> And, it is such a cold thing to say.....it also hurt when my friends

> say it to me or as one said well, you are getting old you didn't

expect

> to live to be 90 did you? (actually I did! LOL ). Joyce R. Prescott

AZ

> PF Nov o8

>

[Guest guest]

Joyce,

I'm sorry you have gotten such harsh responses! It is very odd how our

loved ones react. My parents and siblings were probably the most

positive. On the other hand, I've had to distance myself from a few

people who reacted harshly and didn't seem to care that they hurt me.

Sometimes the people who make those unexpected nasty remarks are trying

not to show how much they are hurting for you.

33 FL

IPF 1/06

>

> When I told a few friends and my son that I had an illness that was

> terminal some of them and my son responded with:Well, we all have to

go

> sometime. Has anyone had someone say this to them and if so what do

you

> say when they say that? It hurt me deeply when my son said that to

me.

> And, it is such a cold thing to say.....it also hurt when my friends

> say it to me or as one said well, you are getting old you didn't

expect

> to live to be 90 did you? (actually I did! LOL ). Joyce R. Prescott

AZ

> PF Nov o8

>

[Guest guest]

Joyce,

Wow, I'm so sorry that the people around you reacted with so little compassion. And I'm with you, I expected to live to be 90 too!

I think that all of us have had some mixed experiences with people being less sympathetic than we would wish them to be. I've lost some friends who are not comfortable around me since I was diagnosed and on oxygen. My family has for the most part been wonderful. My son is young, he was only 20 when I was diagnosed. He still struggles with the idea that I won't be around as long as he might like me to be but for the most part he's very supportive.

Maybe your son and your friends just need some time to get used to the idea. Make some information available to them and give them some time to digest. Maybe that will help.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Thursday, January 15, 2009 5:45:26 PMSubject: Strange responses to knowledge of illness

When I told a few friends and my son that I had an illness that was terminal some of them and my son responded with:Well, we all have to go sometime. Has anyone had someone say this to them and if so what do you say when they say that? It hurt me deeply when my son said that to me. And, it is such a cold thing to say.....it also hurt when my friends say it to me or as one said well, you are getting old you didn't expect to live to be 90 did you? (actually I did! LOL ). Joyce R. Prescott AZ PF Nov o8

[Guest guest]

Joyce,

Wow, I'm so sorry that the people around you reacted with so little compassion. And I'm with you, I expected to live to be 90 too!

I think that all of us have had some mixed experiences with people being less sympathetic than we would wish them to be. I've lost some friends who are not comfortable around me since I was diagnosed and on oxygen. My family has for the most part been wonderful. My son is young, he was only 20 when I was diagnosed. He still struggles with the idea that I won't be around as long as he might like me to be but for the most part he's very supportive.

Maybe your son and your friends just need some time to get used to the idea. Make some information available to them and give them some time to digest. Maybe that will help.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Thursday, January 15, 2009 5:45:26 PMSubject: Strange responses to knowledge of illness

When I told a few friends and my son that I had an illness that was terminal some of them and my son responded with:Well, we all have to go sometime. Has anyone had someone say this to them and if so what do you say when they say that? It hurt me deeply when my son said that to me. And, it is such a cold thing to say.....it also hurt when my friends say it to me or as one said well, you are getting old you didn't expect to live to be 90 did you? (actually I did! LOL ). Joyce R. Prescott AZ PF Nov o8

[Guest guest]

Joyce, I've previously stated that illness

seems to act like a filter in some strange way.

The people who truly care float to the top and many unlikely ones seem

to disappear.

They stopped calling!!

I've had to distance myself from many who I thought were friends but

who really

were not.. On the other hands I have become closer with many who I

would not have

expected to be so caring. Family members ( for me...my brother)

sometimes are the one that

hurt us the most. My brother thinks that because I can get out ( with

O2.. mind you) I'm fine and

not ill. So why can't I just drop everything and run whenever my 89

year old very strong Mom needs help.He of course

sends his wife...I guess he figures that that counts. No matter what

I;ve said, or what Mike has told him

.. he just doesn't get it at all! It's painful to admit that he makes me

so angry..but just saying that takes energy

away from my positive activities.

Sorry for sort of dumping on you...didn't mean to.

Have a good week-end.

I'm happy that you connected with Jewish Hospital in Denver...it's

supposed to be outstanding.

Z fibriotic NSIP/05

Z 64,

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to

Darah

and Sara

“I’m gonna

be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

greycharlie wrote:

When I told a few friends and my son that I had an illness that

was

terminal some of them and my son responded with:Well, we all have to go

sometime. Has anyone had someone say this to them and if so what do you

say when they say that? It hurt me deeply when my son said that to me.

And, it is such a cold thing to say.....it also hurt when my friends

say it to me or as one said well, you are getting old you didn't expect

to live to be 90 did you? (actually I did! LOL ). Joyce R. Prescott AZ

PF Nov o8

No virus found in this incoming message.

Checked by AVG - http://www.avg.com Version: 8.0.176 / Virus Database: 270.10.7/1895 - Release Date: 1/15/2009 7:46 AM

[Guest guest]

Joyce, I've previously stated that illness

seems to act like a filter in some strange way.

The people who truly care float to the top and many unlikely ones seem

to disappear.

They stopped calling!!

I've had to distance myself from many who I thought were friends but

who really

were not.. On the other hands I have become closer with many who I

would not have

expected to be so caring. Family members ( for me...my brother)

sometimes are the one that

hurt us the most. My brother thinks that because I can get out ( with

O2.. mind you) I'm fine and

not ill. So why can't I just drop everything and run whenever my 89

year old very strong Mom needs help.He of course

sends his wife...I guess he figures that that counts. No matter what

I;ve said, or what Mike has told him

.. he just doesn't get it at all! It's painful to admit that he makes me

so angry..but just saying that takes energy

away from my positive activities.

Sorry for sort of dumping on you...didn't mean to.

Have a good week-end.

I'm happy that you connected with Jewish Hospital in Denver...it's

supposed to be outstanding.

Z fibriotic NSIP/05

Z 64,

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to

Darah

and Sara

“I’m gonna

be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

greycharlie wrote:

When I told a few friends and my son that I had an illness that

was

terminal some of them and my son responded with:Well, we all have to go

sometime. Has anyone had someone say this to them and if so what do you

say when they say that? It hurt me deeply when my son said that to me.

And, it is such a cold thing to say.....it also hurt when my friends

say it to me or as one said well, you are getting old you didn't expect

to live to be 90 did you? (actually I did! LOL ). Joyce R. Prescott AZ

PF Nov o8

No virus found in this incoming message.

Checked by AVG - http://www.avg.com Version: 8.0.176 / Virus Database: 270.10.7/1895 - Release Date: 1/15/2009 7:46 AM

[Guest guest]

Joyce, I've previously stated that illness

seems to act like a filter in some strange way.

The people who truly care float to the top and many unlikely ones seem

to disappear.

They stopped calling!!

I've had to distance myself from many who I thought were friends but

who really

were not.. On the other hands I have become closer with many who I

would not have

expected to be so caring. Family members ( for me...my brother)

sometimes are the one that

hurt us the most. My brother thinks that because I can get out ( with

O2.. mind you) I'm fine and

not ill. So why can't I just drop everything and run whenever my 89

year old very strong Mom needs help.He of course

sends his wife...I guess he figures that that counts. No matter what

I;ve said, or what Mike has told him

.. he just doesn't get it at all! It's painful to admit that he makes me

so angry..but just saying that takes energy

away from my positive activities.

Sorry for sort of dumping on you...didn't mean to.

Have a good week-end.

I'm happy that you connected with Jewish Hospital in Denver...it's

supposed to be outstanding.

Z fibriotic NSIP/05

Z 64,

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to

Darah

and Sara

“I’m gonna

be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

greycharlie wrote:

When I told a few friends and my son that I had an illness that

was

terminal some of them and my son responded with:Well, we all have to go

sometime. Has anyone had someone say this to them and if so what do you

say when they say that? It hurt me deeply when my son said that to me.

And, it is such a cold thing to say.....it also hurt when my friends

say it to me or as one said well, you are getting old you didn't expect

to live to be 90 did you? (actually I did! LOL ). Joyce R. Prescott AZ

PF Nov o8

No virus found in this incoming message.

Checked by AVG - http://www.avg.com Version: 8.0.176 / Virus Database: 270.10.7/1895 - Release Date: 1/15/2009 7:46 AM

[Guest guest]

Joyce R....what terrible insensitive things to say to an ill person. I'd TELL my son how hurt I feel and you seem to have very cool friends...no pet help, no driving for medical and such a cavalier attitude about your illness.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Strange responses to knowledge of illness

When I told a few friends and my son that I had an illness that was terminal some of them and my son responded with:Well, we all have to go sometime. Has anyone had someone say this to them and if so what do you say when they say that? It hurt me deeply when my son said that to me. And, it is such a cold thing to say.....it also hurt when my friends say it to me or as one said well, you are getting old you didn't expect to live to be 90 did you? (actually I did! LOL ). Joyce R. Prescott AZ PF Nov o8

[Guest guest]

Joyce R....what terrible insensitive things to say to an ill person. I'd TELL my son how hurt I feel and you seem to have very cool friends...no pet help, no driving for medical and such a cavalier attitude about your illness.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Strange responses to knowledge of illness

When I told a few friends and my son that I had an illness that was terminal some of them and my son responded with:Well, we all have to go sometime. Has anyone had someone say this to them and if so what do you say when they say that? It hurt me deeply when my son said that to me. And, it is such a cold thing to say.....it also hurt when my friends say it to me or as one said well, you are getting old you didn't expect to live to be 90 did you? (actually I did! LOL ). Joyce R. Prescott AZ PF Nov o8

[Guest guest]

-thank you for "dumping" on me because I thought I was the only one having these strange responses. They make me want to punch them in the mouth! My son is like your brother. He just says "nope your going to live for another 30 years" and that is the end of it for him. Not very supportive at all. I think he is missing an emotion chip..as several of my friends are. Some think I am making too big a deal over it and they think it is a big ego I have that I would travel to Demver to a prestigous hospital.They think I am over reacting! I have one friend who is a psychiatrist and when I mentioned Jewish National she jumped in and said "absolutely!" She understood my illness and thought the support groups advice was positive and necessary. She backs me 100 per cent..Oh it would be so nice if she were My psychiatrist! Couldn't have such good luck but she brought up the fact that I am all ready having a problem keeping the house up and thought that if I could afford it I should get someone in at least twice a month to wash my floors and do the heavy cleaning. She thought it would be better for my lungs and for me. I will see if I can afford it.

I have noticed that even on 3 liters of oxygen now I am still breathless if I start doing things. Even walking to a restaurant can produce a lack of oxygen in me. It seems harder and harder to breathe and I have only been diagnosed for a few months. Can that be? Maybe it is all in my head? I do tend to think it is all in my head. I feel like I am putting on or am a hpochondriac. Making it up. I don't know why I should be having more difficulty breathing. When he first put me on oxygen (2 liters) It was so wonderful! I loved it and now 2 liters doesn't seem enough. How can that be? And now I am having days when I simply cannot breathe. I feel like I am suffocating. I get scared. It's like I bring air in but I'm not getting any air. It frightens me. And, do I tell my doctor about it? I told my Primary and all she said is "Well, you are looking good". So, my telling her about the incident went onto deaf ears. I was fine then so it was nothing to be concerned about. It made me feel like I was lying. That I never really had the incidents. Or, that it was all in my mind! That this was unimportant information. So, hearing about your problems with others about your illness helps me realize I am not alone! Joyce R Prescott AZ ipf 11-08.

Re: Strange responses to knowledge of illness

Joyce, I've previously stated that illness seems to act like a filter in some strange way.The people who truly care float to the top and many unlikely ones seem to disappear.They stopped calling!!I've had to distance myself from many who I thought were friends but who really were not.. On the other hands I have become closer with many who I would not have expected to be so caring. Family members ( for me...my brother) sometimes are the one thathurt us the most. My brother thinks that because I can get out ( with O2.. mind you) I'm fine andnot ill. So why can't I just drop everything and run whenever my 89 year old very strong Mom needs help.He of coursesends his wife...I guess he figures that that counts. No matter what I;ve said, or what Mike has told him. he just doesn't get it at all! It's painful to admit that he makes me so angry..but just saying that takes energyaway from my positive activities.Sorry for sort of dumping on you...didn't mean to.Have a good week-end.I'm happy that you connected with Jewish Hospital in Denver...it's supposed to be outstanding.

Z 64, fibriotic NSIP/o5/PA

And "mild" PH/10/07 and Reynaud's too!!

No, NSIP was not self-inflicted.I never smoked!

Potter, reader,carousel lover and MomMom to Darah

and Sara

"I'm gonna be iron like a lion in Zion" Bob Marley

Vinca Minor-periwinkle is my flower

<!--[if !supportEmptyParas]--> <!--[endif]-->

<!--[if !supportEmptyParas]--> <!--[endif]-->greycharlie wrote:

When I told a few friends and my son that I had an illness that was terminal some of them and my son responded with:Well, we all have to go sometime. Has anyone had someone say this to them and if so what do you say when they say that? It hurt me deeply when my son said that to me. And, it is such a cold thing to say.....it also hurt when my friends say it to me or as one said well, you are getting old you didn't expect to live to be 90 did you? (actually I did! LOL ). Joyce R. Prescott AZ PF Nov o8

No virus found in this incoming message.

Checked by AVG - http://www.avg.com Version: 8.0.176 / Virus Database: 270.10.7/1895 - Release Date: 1/15/2009 7:46 AM

[Guest guest]

Joyce, Do you have an oximeter? It is the best thing we can do for ourselves. You need to check your saturation in all different situations. 2 or 3 L may not be enough when you are active. If your saturation is dropping below 90 for more that a few min. you are getting damage in the rest of your organs. It is so very important. I am not sure but I didn't see Bruce tell you about them.Most of us have ordered them on line. $65.00 & up.  Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  -thank you for "dumping" on me because I thought I was the only one having these strange responses. They make me want to punch them in the mouth! My son is like your brother. He just says "nope your going to live for another 30 years" and that is the end of it for him. Not very supportive at all. I think he is missing an emotion chip..as several of my friends are. Some think I am making too big a deal over it and they think it is a big ego I have that I would travel to Demver to  a prestigous hospital.They think I am over reacting! I have one friend who is a psychiatrist and when I mentioned Jewish National she jumped in and said "absolutely!" She understood my illness and thought the support groups advice was positive and necessary. She backs me 100 per cent..Oh it would be so nice if she were My psychiatrist! Couldn't have such good luck but she brought up the fact that I am all ready having a problem keeping the house up and thought that if I could afford it I should get someone in at least twice a month to wash my floors and do the heavy cleaning. She thought it would be better for my lungs and for me. I will see if I can afford it.I have noticed that even on 3 liters of oxygen now I am still breathless if I start doing things. Even walking to a restaurant can produce a lack of oxygen in me. It seems harder and harder to breathe and I have only been diagnosed for a few months. Can that be? Maybe it is all in my head? I do tend to think it is all in my head. I feel like I am putting on or am a hpochondriac. Making it up. I don't know why I should be having more difficulty breathing. When he first put me on oxygen (2 liters) It was so wonderful! I loved it and now 2 liters doesn't seem enough. How can that be? And now I am having days when I simply cannot breathe. I feel like I am suffocating. I get scared. It's like I bring air in but I'm not getting any air. It frightens me. And, do I tell my doctor about it? I told my Primary and all she said is "Well, you are looking good". So, my telling her about the incident went onto deaf ears. I was fine then so it was nothing to be concerned about. It made me feel like I was lying. That I never really had the incidents. Or, that it was all in my mind! That this was unimportant information. So, hearing about your problems with others about your illness helps me realize I am not alone! Joyce R Prescott AZ ipf 11-08. Re: Strange responses to knowledge of illnessJoyce, I've previously stated that illness seems to act like a filter in some strange way.The people who truly care float to the top and many unlikely ones seem to disappear.They stopped calling!!I've had to distance myself from many who I thought were friends but who really were not.. On the other hands I have become closer with many who I would not have expected to be so caring.  Family members ( for me...my brother) sometimes are the one thathurt us the most.  My brother thinks that because I can get out ( with O2.. mind you) I'm fine andnot ill. So why can't I just drop everything and run whenever my 89 year old very strong Mom needs help.He of coursesends his wife...I guess he figures that that counts.  No matter what I;ve said, or what Mike has told him. he just doesn't get it at all! It's painful to admit that he makes me so angry..but just saying that takes energyaway from my positive activities.Sorry for sort of dumping on you...didn't mean to.Have a good week-end.I'm happy that you connected with Jewish Hospital in Denver...it's supposed to be outstanding. Z 64, fibriotic NSIP/o5/PAAnd "mild" PH/10/07 and Reynaud's too!!No, NSIP was not self-inflicted.I never smoked!Potter, reader,carousel lover and MomMom to Darahand Sara      "I'm gonna be iron like a lion in Zion"  Bob MarleyVinca Minor-periwinkle is my flower<!--[if !supportEmptyParas]--> <!--[endif]--><!--[if !supportEmptyParas]--> <!--[endif]-->greycharlie wrote:When I told a few friends and my son that I had an illness that was terminal some of them and my son responded with:Well, we all have to go sometime. Has anyone had someone say this to them and if so what do you say when they say that? It hurt me deeply when my son said that to me. And, it is such a cold thing to say.....it also hurt when my friends say it to me or as one said well, you are getting old you didn't expectto live to be 90 did you? (actually I did! LOL ). Joyce R. Prescott AZPF Nov o8No virus found in this incoming message.

Checked by AVG - http://www.avg.com Version: 8.0.176 / Virus Database: 270.10.7/1895 - Release Date: 1/15/2009 7:46 AM

[Guest guest]



Peggy- I have been told about getting a oximeter but have no money at the moment to get one. I will get one as soon as I can. I see my Primary doc today and will ask her for a prescription. If my insurance company won't honor it I can use it as a tax deduction if I have a prescription. I'm afraid my doc will think me foolish for asking but, what the hell, I can try. Joyce Prescott IPF 11-08

Re: Strange responses to knowledge of illness

Joyce, I've previously stated that illness seems to act like a filter in some strange way.The people who truly care float to the top and many unlikely ones seem to disappear.They stopped calling!!I've had to distance myself from many who I thought were friends but who reallywere not.. On the other hands I have become closer with many who I would not haveexpected to be so caring. Family members ( for me...my brother) sometimes are the one thathurt us the most. My brother thinks that because I can get out ( with O2.. mind you) I'm fine andnot ill. So why can't I just drop everything and run whenever my 89 year old very strong Mom needs help.He of coursesends his wife...I guess he figures that that counts. No matter what I;ve said, or what Mike has told him. he just doesn't get it at all! It's painful to admit that he makes me so angry..but just saying that takes energyaway from my positive activities.Sorry for sort of dumping on you...didn't mean to.Have a good week-end.I'm happy that you connected with Jewish Hospital in Denver...it's supposed to be outstanding.

Z 64, fibriotic NSIP/o5/PA

And "mild" PH/10/07 and Reynaud's too!!

No, NSIP was not self-inflicted.I never smoked!

Potter, reader,carousel lover and MomMom to Darah

and Sara

"I'm gonna be iron like a lion in Zion" Bob Marley

Vinca Minor-periwinkle is my flower

<!--[if !supportEmptyParas]--><!--[endif]-->

<!--[if !supportEmptyParas]--><!--[endif]-->greycharlie wrote:

When I told a few friends and my son that I had an illness that wasterminal some of them and my son responded with:Well, we all have to gosometime. Has anyone had someone say this to them and if so what do yousay when they say that? It hurt me deeply when my son said that to me.And, it is such a cold thing to say.....it also hurt when my friendssay it to me or as one said well, you are getting old you didn't expectto live to be 90 did you? (actually I did! LOL ). Joyce R. Prescott AZPF Nov o8No virus found in this incoming message.

Checked by AVG - http://www.avg.com Version: 8.0.176 / Virus Database: 270.10.7/1895 - Release Date: 1/15/2009 7:46 AM

[Guest guest]



Peggy- I have been told about getting a oximeter but have no money at the moment to get one. I will get one as soon as I can. I see my Primary doc today and will ask her for a prescription. If my insurance company won't honor it I can use it as a tax deduction if I have a prescription. I'm afraid my doc will think me foolish for asking but, what the hell, I can try. Joyce Prescott IPF 11-08

Re: Strange responses to knowledge of illness

Joyce, I've previously stated that illness seems to act like a filter in some strange way.The people who truly care float to the top and many unlikely ones seem to disappear.They stopped calling!!I've had to distance myself from many who I thought were friends but who reallywere not.. On the other hands I have become closer with many who I would not haveexpected to be so caring. Family members ( for me...my brother) sometimes are the one thathurt us the most. My brother thinks that because I can get out ( with O2.. mind you) I'm fine andnot ill. So why can't I just drop everything and run whenever my 89 year old very strong Mom needs help.He of coursesends his wife...I guess he figures that that counts. No matter what I;ve said, or what Mike has told him. he just doesn't get it at all! It's painful to admit that he makes me so angry..but just saying that takes energyaway from my positive activities.Sorry for sort of dumping on you...didn't mean to.Have a good week-end.I'm happy that you connected with Jewish Hospital in Denver...it's supposed to be outstanding.

Z 64, fibriotic NSIP/o5/PA

And "mild" PH/10/07 and Reynaud's too!!

No, NSIP was not self-inflicted.I never smoked!

Potter, reader,carousel lover and MomMom to Darah

and Sara

"I'm gonna be iron like a lion in Zion" Bob Marley

Vinca Minor-periwinkle is my flower

<!--[if !supportEmptyParas]--><!--[endif]-->

<!--[if !supportEmptyParas]--><!--[endif]-->greycharlie wrote:

When I told a few friends and my son that I had an illness that wasterminal some of them and my son responded with:Well, we all have to gosometime. Has anyone had someone say this to them and if so what do yousay when they say that? It hurt me deeply when my son said that to me.And, it is such a cold thing to say.....it also hurt when my friendssay it to me or as one said well, you are getting old you didn't expectto live to be 90 did you? (actually I did! LOL ). Joyce R. Prescott AZPF Nov o8No virus found in this incoming message.

Checked by AVG - http://www.avg.com Version: 8.0.176 / Virus Database: 270.10.7/1895 - Release Date: 1/15/2009 7:46 AM

[Guest guest]



Peggy- I have been told about getting a oximeter but have no money at the moment to get one. I will get one as soon as I can. I see my Primary doc today and will ask her for a prescription. If my insurance company won't honor it I can use it as a tax deduction if I have a prescription. I'm afraid my doc will think me foolish for asking but, what the hell, I can try. Joyce Prescott IPF 11-08

Re: Strange responses to knowledge of illness

Joyce, I've previously stated that illness seems to act like a filter in some strange way.The people who truly care float to the top and many unlikely ones seem to disappear.They stopped calling!!I've had to distance myself from many who I thought were friends but who reallywere not.. On the other hands I have become closer with many who I would not haveexpected to be so caring. Family members ( for me...my brother) sometimes are the one thathurt us the most. My brother thinks that because I can get out ( with O2.. mind you) I'm fine andnot ill. So why can't I just drop everything and run whenever my 89 year old very strong Mom needs help.He of coursesends his wife...I guess he figures that that counts. No matter what I;ve said, or what Mike has told him. he just doesn't get it at all! It's painful to admit that he makes me so angry..but just saying that takes energyaway from my positive activities.Sorry for sort of dumping on you...didn't mean to.Have a good week-end.I'm happy that you connected with Jewish Hospital in Denver...it's supposed to be outstanding.

Z 64, fibriotic NSIP/o5/PA

And "mild" PH/10/07 and Reynaud's too!!

No, NSIP was not self-inflicted.I never smoked!

Potter, reader,carousel lover and MomMom to Darah

and Sara

"I'm gonna be iron like a lion in Zion" Bob Marley

Vinca Minor-periwinkle is my flower

<!--[if !supportEmptyParas]--><!--[endif]-->

<!--[if !supportEmptyParas]--><!--[endif]-->greycharlie wrote:

When I told a few friends and my son that I had an illness that wasterminal some of them and my son responded with:Well, we all have to gosometime. Has anyone had someone say this to them and if so what do yousay when they say that? It hurt me deeply when my son said that to me.And, it is such a cold thing to say.....it also hurt when my friendssay it to me or as one said well, you are getting old you didn't expectto live to be 90 did you? (actually I did! LOL ). Joyce R. Prescott AZPF Nov o8No virus found in this incoming message.

Checked by AVG - http://www.avg.com Version: 8.0.176 / Virus Database: 270.10.7/1895 - Release Date: 1/15/2009 7:46 AM

[Guest guest]

I would think that their seemingly rude comments is an effort to avoid the dark truth of your statement, not a lack of sympathy. Jack79/IPF - UIP/dx06/05 Maine

To: Breathe-Support Sent: Thursday, January 15, 2009 5:45:26 PMSubject: Strange responses to knowledge of illness

When I told a few friends and my son that I had an illness that was terminal some of them and my son responded with:Well, we all have to go sometime. Has anyone had someone say this to them and if so what do you say when they say that? It hurt me deeply when my son said that to me. And, it is such a cold thing to say.....it also hurt when my friends say it to me or as one said well, you are getting old you didn't expect to live to be 90 did you? (actually I did! LOL ). Joyce R. Prescott AZ PF Nov o8

[Guest guest]

I would think that their seemingly rude comments is an effort to avoid the dark truth of your statement, not a lack of sympathy. Jack79/IPF - UIP/dx06/05 Maine

To: Breathe-Support Sent: Thursday, January 15, 2009 5:45:26 PMSubject: Strange responses to knowledge of illness

When I told a few friends and my son that I had an illness that was terminal some of them and my son responded with:Well, we all have to go sometime. Has anyone had someone say this to them and if so what do you say when they say that? It hurt me deeply when my son said that to me. And, it is such a cold thing to say.....it also hurt when my friends say it to me or as one said well, you are getting old you didn't expect to live to be 90 did you? (actually I did! LOL ). Joyce R. Prescott AZ PF Nov o8

[Guest guest]

I would think that their seemingly rude comments is an effort to avoid the dark truth of your statement, not a lack of sympathy. Jack79/IPF - UIP/dx06/05 Maine

To: Breathe-Support Sent: Thursday, January 15, 2009 5:45:26 PMSubject: Strange responses to knowledge of illness

When I told a few friends and my son that I had an illness that was terminal some of them and my son responded with:Well, we all have to go sometime. Has anyone had someone say this to them and if so what do you say when they say that? It hurt me deeply when my son said that to me. And, it is such a cold thing to say.....it also hurt when my friends say it to me or as one said well, you are getting old you didn't expect to live to be 90 did you? (actually I did! LOL ). Joyce R. Prescott AZ PF Nov o8

[Guest guest]

Joyce, Some of us have had Docs tell us not to use them.. my response to that is they don't have this disease and don't have a clue what it is like to have your saturation drop until you drop. It just makes me nuts.. Anyhow you will be doing yourself such a huge favor buying one. When your walking and your thigh muscles hurt that is lack of 0xygen. I had that for probably 2 or 3 years before I was Dx. (diagnosed) So you will find 99% of Docs say they understand but they can't until they walk around with this monster on your back. The thing that is your BEST for you is attitude.. Stay as positive as possible. Find happy where everyou find yourself. Trust me the sad days of sorrow, anger and why me will find you....FIGHT girl FIGHT..God Bless you with sweet peace and strength. Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  Peggy- I have been told about getting a oximeter but have no money at the moment to get one. I will get one as soon as I can. I see my Primary doc today and will ask her for a prescription. If my insurance company won't honor it I can use it as a tax deduction if I have a prescription. I'm afraid my doc will think me foolish for asking but, what the hell, I can try. Joyce Prescott IPF 11-08Re: Strange responses to knowledge of illnessJoyce, I've previously stated that illness seems to act like a filter in some strange way.The people who truly care float to the top and many unlikely ones seem to disappear.They stopped calling!!I've had to distance myself from many who I thought were friends but who reallywere not.. On the other hands I have become closer with many who I would not haveexpected to be so caring. Family members ( for me...my brother) sometimes are the one thathurt us the most. My brother thinks that because I can get out ( with O2.. mind you) I'm fine andnot ill. So why can't I just drop everything and run whenever my 89 year old very strong Mom needs help.He of coursesends his wife...I guess he figures that that counts. No matter what I;ve said, or what Mike has told him. he just doesn't get it at all! It's painful to admit that he makes me so angry..but just saying that takes energyaway from my positive activities.Sorry for sort of dumping on you...didn't mean to.Have a good week-end.I'm happy that you connected with Jewish Hospital in Denver...it's supposed to be outstanding. Z 64, fibriotic NSIP/o5/PAAnd "mild" PH/10/07 and Reynaud's too!!No, NSIP was not self-inflicted.I never smoked!Potter, reader,carousel lover and MomMom to Darahand Sara"I'm gonna be iron like a lion in Zion" Bob MarleyVinca Minor-periwinkle is my flower<!--[if !supportEmptyParas]--><!--[endif]--><!--[if !supportEmptyParas]--><!--[endif]-->greycharlie wrote:When I told a few friends and my son that I had an illness that wasterminal some of them and my son responded with:Well, we all have to gosometime. Has anyone had someone say this to them and if so what do yousay when they say that? It hurt me deeply when my son said that to me.And, it is such a cold thing to say.....it also hurt when my friendssay it to me or as one said well, you are getting old you didn't expectto live to be 90 did you? (actually I did! LOL ). Joyce R. Prescott AZPF Nov o8No virus found in this incoming message.

Checked by AVG - http://www.avg.com Version: 8.0.176 / Virus Database: 270.10.7/1895 - Release Date: 1/15/2009 7:46 AM