Re: Kidney disease young, vs. later in life

[Guest guest]

Kathleen,

It's funny how different people react to things differently. You say that you

get the " pitty attitude " I get the exact opposite. I don't tell people too

often unless I am in a position where I have to. Most of the people in my life

don't understand. My mother whom is a nurse and you would think would be more

understanding acts like it is just a scrape on the knee. The rest of my family

acts like it doesn't exist. Then there are/where the so called " friends " that

would call me a loser for not going out to bars late at night. Then there are my

real friends that try and understand but really can't. It is hard sometimes

because my 2 best friends are alcoholics... they have control over it... it

isn't like they are wasted all the time but usually if I want to hang out with

them on a night that we are all off work then i have to go to the bar and then

if I don't drink because I usually only will once a month.. everybody asks me

why I am not drinking and telling them that you are not a big

drinker and only occasionally drink well that is not acceptable. So I think

that in the long run nobody really understands and in some cases they really

just don't care... at least from what i have seen of people. I think that I am

attracting the wrong people in my life. All I want from friends and family is

understanding ... I wish that they would understand that some days i just don't

have the energy to do anything especially working full time at one job and part

time at another. I don't think that it should be that hard to ask! OK I am sorry

I will stop the complaining. It has been a rough week.

Kathleen wrote:

Ruminating about Pierre's latest posting...

I find those of us who develop kidney disease at a younger age are

much more " well adjusted " to it than someone who is faced with it at a

much later stage in life - more accepting, maybe? Generally by the

time we know what's going on and what it means for the rest of our

life, we've gotten used to the protocol, doctor visits, meds, and

dietary restrictions, etc., etc. So it doesn't seem so earth shaking

when we're going through the first stages of the disease and it's

diagnosis.

The one thing that does bother me, however, is (what I call) the

" pitying attitude " of others. And having CKD for so long, and looking

about 10 years younger than I really am, I see it a lot. It's gotten

to the point where I don't strike up conversations in the patient

waiting room at the nephrologists anymore and don't mention it to

co-workers and friends unless it's absolutely necessary or I know them

really, really well. Most seem to feel that it's a death sentance,

because they don't know much about kidney disease, or they only see

very sick and worn out people on dialysis. Rather than being a death

sentance for me, it's helped me to appreciate life more than the

average person does. Plus, I was taught at a very young age that I

needed to be able to manage my health care.

Kathleen

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home page:

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Visit our companion website at www.igan.ca. The site is entirely supported by

donations. If you would like to help, go to:

http://www.igan.ca/id62.htm

Thank you

[Guest guest]

Kathleen and Jill,

I was diagnosed @ 29 (I'm 41 now) and by the grace of God I was able to accept

the diagnosis pretty quickly. I also learned very quickly to share the dx only

to my very few friends and family. This way they don't treat me differently.

Most of the people at church were shocked when I asked for prayer for the tx.

They had no clue that I had a CKD.

Jill, I hope you find friends that will understand what you are going through.

Real friends want only the best for you.

Jing

jill higby wrote:

Kathleen,

It's funny how different people react to things differently. You say that you

get the " pitty attitude " I get the exact opposite. I don't tell people too

often unless I am in a position where I have to. Most of the people in my life

don't understand. My mother whom is a nurse and you would think would be more

understanding acts like it is just a scrape on the knee. The rest of my family

acts like it doesn't exist. Then there are/where the so called " friends " that

would call me a loser for not going out to bars late at night. Then there are my

real friends that try and understand but really can't. It is hard sometimes

because my 2 best friends are alcoholics... they have control over it... it

isn't like they are wasted all the time but usually if I want to hang out with

them on a night that we are all off work then i have to go to the bar and then

if I don't drink because I usually only will once a month.. everybody asks me

why I am not drinking and telling them that you are not a big

drinker and only occasionally drink well that is not acceptable. So I think that

in the long run nobody really understands and in some cases they really just

don't care... at least from what i have seen of people. I think that I am

attracting the wrong people in my life. All I want from friends and family is

understanding ... I wish that they would understand that some days i just don't

have the energy to do anything especially working full time at one job and part

time at another. I don't think that it should be that hard to ask! OK I am sorry

I will stop the complaining. It has been a rough week.

Kathleen wrote:

Ruminating about Pierre's latest posting...

I find those of us who develop kidney disease at a younger age are

much more " well adjusted " to it than someone who is faced with it at a

much later stage in life - more accepting, maybe? Generally by the

time we know what's going on and what it means for the rest of our

life, we've gotten used to the protocol, doctor visits, meds, and

dietary restrictions, etc., etc. So it doesn't seem so earth shaking

when we're going through the first stages of the disease and it's

diagnosis.

The one thing that does bother me, however, is (what I call) the

" pitying attitude " of others. And having CKD for so long, and looking

about 10 years younger than I really am, I see it a lot. It's gotten

to the point where I don't strike up conversations in the patient

waiting room at the nephrologists anymore and don't mention it to

co-workers and friends unless it's absolutely necessary or I know them

really, really well. Most seem to feel that it's a death sentance,

because they don't know much about kidney disease, or they only see

very sick and worn out people on dialysis. Rather than being a death

sentance for me, it's helped me to appreciate life more than the

average person does. Plus, I was taught at a very young age that I

needed to be able to manage my health care.

Kathleen

To edit your settings for the group, go to our Yahoo Group

home page:

http://groups.yahoo.com/group/iga-nephropathy/

To unsubcribe via email,

iga-nephropathy-unsubscribe

Visit our companion website at www.igan.ca. The site is entirely supported by

donations. If you would like to help, go to:

http://www.igan.ca/id62.htm

Thank you

[Guest guest]

Kathleen and Jill,

I was diagnosed @ 29 (I'm 41 now) and by the grace of God I was able to accept

the diagnosis pretty quickly. I also learned very quickly to share the dx only

to my very few friends and family. This way they don't treat me differently.

Most of the people at church were shocked when I asked for prayer for the tx.

They had no clue that I had a CKD.

Jill, I hope you find friends that will understand what you are going through.

Real friends want only the best for you.

Jing

jill higby wrote:

Kathleen,

It's funny how different people react to things differently. You say that you

get the " pitty attitude " I get the exact opposite. I don't tell people too

often unless I am in a position where I have to. Most of the people in my life

don't understand. My mother whom is a nurse and you would think would be more

understanding acts like it is just a scrape on the knee. The rest of my family

acts like it doesn't exist. Then there are/where the so called " friends " that

would call me a loser for not going out to bars late at night. Then there are my

real friends that try and understand but really can't. It is hard sometimes

because my 2 best friends are alcoholics... they have control over it... it

isn't like they are wasted all the time but usually if I want to hang out with

them on a night that we are all off work then i have to go to the bar and then

if I don't drink because I usually only will once a month.. everybody asks me

why I am not drinking and telling them that you are not a big

drinker and only occasionally drink well that is not acceptable. So I think that

in the long run nobody really understands and in some cases they really just

don't care... at least from what i have seen of people. I think that I am

attracting the wrong people in my life. All I want from friends and family is

understanding ... I wish that they would understand that some days i just don't

have the energy to do anything especially working full time at one job and part

time at another. I don't think that it should be that hard to ask! OK I am sorry

I will stop the complaining. It has been a rough week.

Kathleen wrote:

Ruminating about Pierre's latest posting...

I find those of us who develop kidney disease at a younger age are

much more " well adjusted " to it than someone who is faced with it at a

much later stage in life - more accepting, maybe? Generally by the

time we know what's going on and what it means for the rest of our

life, we've gotten used to the protocol, doctor visits, meds, and

dietary restrictions, etc., etc. So it doesn't seem so earth shaking

when we're going through the first stages of the disease and it's

diagnosis.

The one thing that does bother me, however, is (what I call) the

" pitying attitude " of others. And having CKD for so long, and looking

about 10 years younger than I really am, I see it a lot. It's gotten

to the point where I don't strike up conversations in the patient

waiting room at the nephrologists anymore and don't mention it to

co-workers and friends unless it's absolutely necessary or I know them

really, really well. Most seem to feel that it's a death sentance,

because they don't know much about kidney disease, or they only see

very sick and worn out people on dialysis. Rather than being a death

sentance for me, it's helped me to appreciate life more than the

average person does. Plus, I was taught at a very young age that I

needed to be able to manage my health care.

Kathleen

To edit your settings for the group, go to our Yahoo Group

home page:

http://groups.yahoo.com/group/iga-nephropathy/

To unsubcribe via email,

iga-nephropathy-unsubscribe

Visit our companion website at www.igan.ca. The site is entirely supported by

donations. If you would like to help, go to:

http://www.igan.ca/id62.htm

Thank you

[Guest guest]

Kathleen and Jill,

I was diagnosed @ 29 (I'm 41 now) and by the grace of God I was able to accept

the diagnosis pretty quickly. I also learned very quickly to share the dx only

to my very few friends and family. This way they don't treat me differently.

Most of the people at church were shocked when I asked for prayer for the tx.

They had no clue that I had a CKD.

Jill, I hope you find friends that will understand what you are going through.

Real friends want only the best for you.

Jing

jill higby wrote:

Kathleen,

It's funny how different people react to things differently. You say that you

get the " pitty attitude " I get the exact opposite. I don't tell people too

often unless I am in a position where I have to. Most of the people in my life

don't understand. My mother whom is a nurse and you would think would be more

understanding acts like it is just a scrape on the knee. The rest of my family

acts like it doesn't exist. Then there are/where the so called " friends " that

would call me a loser for not going out to bars late at night. Then there are my

real friends that try and understand but really can't. It is hard sometimes

because my 2 best friends are alcoholics... they have control over it... it

isn't like they are wasted all the time but usually if I want to hang out with

them on a night that we are all off work then i have to go to the bar and then

if I don't drink because I usually only will once a month.. everybody asks me

why I am not drinking and telling them that you are not a big

drinker and only occasionally drink well that is not acceptable. So I think that

in the long run nobody really understands and in some cases they really just

don't care... at least from what i have seen of people. I think that I am

attracting the wrong people in my life. All I want from friends and family is

understanding ... I wish that they would understand that some days i just don't

have the energy to do anything especially working full time at one job and part

time at another. I don't think that it should be that hard to ask! OK I am sorry

I will stop the complaining. It has been a rough week.

Kathleen wrote:

Ruminating about Pierre's latest posting...

I find those of us who develop kidney disease at a younger age are

much more " well adjusted " to it than someone who is faced with it at a

much later stage in life - more accepting, maybe? Generally by the

time we know what's going on and what it means for the rest of our

life, we've gotten used to the protocol, doctor visits, meds, and

dietary restrictions, etc., etc. So it doesn't seem so earth shaking

when we're going through the first stages of the disease and it's

diagnosis.

The one thing that does bother me, however, is (what I call) the

" pitying attitude " of others. And having CKD for so long, and looking

about 10 years younger than I really am, I see it a lot. It's gotten

to the point where I don't strike up conversations in the patient

waiting room at the nephrologists anymore and don't mention it to

co-workers and friends unless it's absolutely necessary or I know them

really, really well. Most seem to feel that it's a death sentance,

because they don't know much about kidney disease, or they only see

very sick and worn out people on dialysis. Rather than being a death

sentance for me, it's helped me to appreciate life more than the

average person does. Plus, I was taught at a very young age that I

needed to be able to manage my health care.

Kathleen

To edit your settings for the group, go to our Yahoo Group

home page:

http://groups.yahoo.com/group/iga-nephropathy/

To unsubcribe via email,

iga-nephropathy-unsubscribe

Visit our companion website at www.igan.ca. The site is entirely supported by

donations. If you would like to help, go to:

http://www.igan.ca/id62.htm

Thank you

[Guest guest]

Hello Group:

Can someone please post what tx is and also CKD? Thank you.

BTW, I have shared 's condition with everyone who'll ask about. I regret

this a little because I don't want them picturing him as sickly. Right now, his

attitude is wonderful, as long as we treat him the same.

Thanks,

Esther

Jing son wrote:

Kathleen and Jill,

I was diagnosed @ 29 (I'm 41 now) and by the grace of God I was able to accept

the diagnosis pretty quickly. I also learned very quickly to share the dx only

to my very few friends and family. This way they don't treat me differently.

Most of the people at church were shocked when I asked for prayer for the tx.

They had no clue that I had a CKD.

Jill, I hope you find friends that will understand what you are going through.

Real friends want only the best for you.

Jing

jill higby wrote:

Kathleen,

It's funny how different people react to things differently. You say that you

get the " pitty attitude " I get the exact opposite. I don't tell people too often

unless I am in a position where I have to. Most of the people in my life don't

understand. My mother whom is a nurse and you would think would be more

understanding acts like it is just a scrape on the knee. The rest of my family

acts like it doesn't exist. Then there are/where the so called " friends " that

would call me a loser for not going out to bars late at night. Then there are my

real friends that try and understand but really can't. It is hard sometimes

because my 2 best friends are alcoholics... they have control over it... it

isn't like they are wasted all the time but usually if I want to hang out with

them on a night that we are all off work then i have to go to the bar and then

if I don't drink because I usually only will once a month.. everybody asks me

why I am not drinking and telling them that you are not a big

drinker and only occasionally drink well that is not acceptable. So I think that

in the long run nobody really understands and in some cases they really just

don't care... at least from what i have seen of people. I think that I am

attracting the wrong people in my life. All I want from friends and family is

understanding ... I wish that they would understand that some days i just don't

have the energy to do anything especially working full time at one job and part

time at another. I don't think that it should be that hard to ask! OK I am sorry

I will stop the complaining. It has been a rough week.

Kathleen wrote:

Ruminating about Pierre's latest posting...

I find those of us who develop kidney disease at a younger age are

much more " well adjusted " to it than someone who is faced with it at a

much later stage in life - more accepting, maybe? Generally by the

time we know what's going on and what it means for the rest of our

life, we've gotten used to the protocol, doctor visits, meds, and

dietary restrictions, etc., etc. So it doesn't seem so earth shaking

when we're going through the first stages of the disease and it's

diagnosis.

The one thing that does bother me, however, is (what I call) the

" pitying attitude " of others. And having CKD for so long, and looking

about 10 years younger than I really am, I see it a lot. It's gotten

to the point where I don't strike up conversations in the patient

waiting room at the nephrologists anymore and don't mention it to

co-workers and friends unless it's absolutely necessary or I know them

really, really well. Most seem to feel that it's a death sentance,

because they don't know much about kidney disease, or they only see

very sick and worn out people on dialysis. Rather than being a death

sentance for me, it's helped me to appreciate life more than the

average person does. Plus, I was taught at a very young age that I

needed to be able to manage my health care.

Kathleen

To edit your settings for the group, go to our Yahoo Group

home page:

http://groups.yahoo.com/group/iga-nephropathy/

To unsubcribe via email,

iga-nephropathy-unsubscribe

Visit our companion website at www.igan.ca. The site is entirely supported by

donations. If you would like to help, go to:

http://www.igan.ca/id62.htm

Thank you

[Guest guest]

Sorry Esther, we tend to use shortcuts here.

CKD is chronic kidney disease, and tx stands for transplant.

In a message dated 12/16/2004 11:50:47 PM Eastern Standard Time, Esther G

writes:

>

>Hello Group:

>Can someone please post what tx is and also CKD?  Thank you.

>BTW, I have shared 's condition with everyone who'll ask about.  I regret

this a little because I don't want them picturing him as sickly.  Right now, his

attitude is wonderful, as long as we treat him the same.

>Thanks,

>Esther

>

>Jing son wrote:

>

>Kathleen and Jill,

>

>I was diagnosed @ 29 (I'm 41 now) and by the grace of God I was able to accept

the diagnosis pretty quickly. I also learned very quickly to share the dx only

to my very few friends and family. This way they don't treat me differently.

Most of the people at church were shocked when I asked for prayer for the tx.

They had no clue that I had a CKD.

>

>Jill, I hope you find friends that will understand what you are going through.

Real friends want only the best for you.

>

>Jing

>

>jill higby wrote:

>Kathleen,

>It's funny how different people react to things differently. You say that you

get the " pitty attitude " I get the exact opposite. I don't tell people too often

unless I am in a position where I have to. Most of the people in my life don't

understand. My mother whom is a nurse and you would think would be more

understanding acts like it is just a scrape on the knee. The rest of my family

acts like it doesn't exist. Then there are/where the so called " friends " that

would call me a loser for not going out to bars late at night. Then there are my

real friends that try and understand but really can't. It is hard sometimes

because my 2 best friends are alcoholics... they have control over it... it

isn't like they are wasted all the time but usually if I want to hang out with

them on a night that we are all off work then i have to go to the bar and then

if I don't drink because I usually only will once a month.. everybody asks me

why I am not drinking and telling them that you are not a big

>drinker and only occasionally drink well that is not acceptable. So I think

that in the long run nobody really understands and in some cases they really

just don't care... at least from what i have seen of people. I think that I am

attracting the wrong people in my life. All I want from friends and family is

understanding ... I wish that they would understand that some days i just don't

have the energy to do anything especially working full time at one job and part

time at another. I don't think that it should be that hard to ask! OK I am sorry

I will stop the complaining. It has been a rough week.

>

>Kathleen wrote:

>Ruminating about Pierre's latest posting...

>

>I find those of us who develop kidney disease at a younger age are

>much more " well adjusted " to it than someone who is faced with it at a

>much later stage in life - more accepting, maybe? Generally by the

>time we know what's going on and what it means for the rest of our

>life, we've gotten used to the protocol, doctor visits, meds, and

>dietary restrictions, etc., etc. So it doesn't seem so earth shaking

>when we're going through the first stages of the disease and it's

>diagnosis.

>

>The one thing that does bother me, however, is (what I call) the

> " pitying attitude " of others. And having CKD for so long, and looking

>about 10 years younger than I really am, I see it a lot. It's gotten

>to the point where I don't strike up conversations in the patient

>waiting room at the nephrologists anymore and don't mention it to

>co-workers and friends unless it's absolutely necessary or I know them

>really, really well. Most seem to feel that it's a death sentance,

>because they don't know much about kidney disease, or they only see

>very sick and worn out people on dialysis. Rather than being a death

>sentance for me, it's helped me to appreciate life more than the

>average person does. Plus, I was taught at a very young age that I

>needed to be able to manage my health care.

>

>Kathleen

>

>

>

>

>

>

>

>To edit your settings for the group, go to our Yahoo Group

>home page:

>http://groups.yahoo.com/group/iga-nephropathy/

>

>To unsubcribe via email,

>iga-nephropathy-unsubscribe

>Visit our companion website at www.igan.ca. The site is entirely supported by

donations. If you would like to help, go to:

>http://www.igan.ca/id62.htm

>

>Thank you

>

>

>

[Guest guest]

Thanks . I couldn't figure how taxes or Texas figured into the

conversation. LOL!

Esther

W4JC@... wrote:

Sorry Esther, we tend to use shortcuts here.

CKD is chronic kidney disease, and tx stands for transplant.

In a message dated 12/16/2004 11:50:47 PM Eastern Standard Time, Esther G

writes:

>

>Hello Group:

>Can someone please post what tx is and also CKD? Thank you.

>BTW, I have shared 's condition with everyone who'll ask about. I regret

this a little because I don't want them picturing him as sickly. Right now, his

attitude is wonderful, as long as we treat him the same.

>Thanks,

>Esther

>

>Jing son wrote:

>

>Kathleen and Jill,

>

>I was diagnosed @ 29 (I'm 41 now) and by the grace of God I was able to accept

the diagnosis pretty quickly. I also learned very quickly to share the dx only

to my very few friends and family. This way they don't treat me differently.

Most of the people at church were shocked when I asked for prayer for the tx.

They had no clue that I had a CKD.

>

>Jill, I hope you find friends that will understand what you are going through.

Real friends want only the best for you.

>

>Jing

>

>jill higby wrote:

>Kathleen,

>It's funny how different people react to things differently. You say that you

get the " pitty attitude " I get the exact opposite. I don't tell people too often

unless I am in a position where I have to. Most of the people in my life don't

understand. My mother whom is a nurse and you would think would be more

understanding acts like it is just a scrape on the knee. The rest of my family

acts like it doesn't exist. Then there are/where the so called " friends " that

would call me a loser for not going out to bars late at night. Then there are my

real friends that try and understand but really can't. It is hard sometimes

because my 2 best friends are alcoholics... they have control over it... it

isn't like they are wasted all the time but usually if I want to hang out with

them on a night that we are all off work then i have to go to the bar and then

if I don't drink because I usually only will once a month.. everybody asks me

why I am not drinking and telling them that you are not a big

>drinker and only occasionally drink well that is not acceptable. So I think

that in the long run nobody really understands and in some cases they really

just don't care... at least from what i have seen of people. I think that I am

attracting the wrong people in my life. All I want from friends and family is

understanding ... I wish that they would understand that some days i just don't

have the energy to do anything especially working full time at one job and part

time at another. I don't think that it should be that hard to ask! OK I am sorry

I will stop the complaining. It has been a rough week.

>

>Kathleen wrote:

>Ruminating about Pierre's latest posting...

>

>I find those of us who develop kidney disease at a younger age are

>much more " well adjusted " to it than someone who is faced with it at a

>much later stage in life - more accepting, maybe? Generally by the

>time we know what's going on and what it means for the rest of our

>life, we've gotten used to the protocol, doctor visits, meds, and

>dietary restrictions, etc., etc. So it doesn't seem so earth shaking

>when we're going through the first stages of the disease and it's

>diagnosis.

>

>The one thing that does bother me, however, is (what I call) the

> " pitying attitude " of others. And having CKD for so long, and looking

>about 10 years younger than I really am, I see it a lot. It's gotten

>to the point where I don't strike up conversations in the patient

>waiting room at the nephrologists anymore and don't mention it to

>co-workers and friends unless it's absolutely necessary or I know them

>really, really well. Most seem to feel that it's a death sentance,

>because they don't know much about kidney disease, or they only see

>very sick and worn out people on dialysis. Rather than being a death

>sentance for me, it's helped me to appreciate life more than the

>average person does. Plus, I was taught at a very young age that I

>needed to be able to manage my health care.

>

>Kathleen

>

>

>

>

>

>

>

>To edit your settings for the group, go to our Yahoo Group

>home page:

>http://groups.yahoo.com/group/iga-nephropathy/

>

>To unsubcribe via email,

>iga-nephropathy-unsubscribe

>Visit our companion website at www.igan.ca. The site is entirely supported by

donations. If you would like to help, go to:

>http://www.igan.ca/id62.htm

>

>Thank you

>

>

>

[Guest guest]

An idea that I hear all the time, from people who aren't there yet, and from

people who don't have kidney disease themselves, and also from the media, is

the " it's a death sentence " thing. Well my friends, if it's a death sentence

to have esrd, it's a pretty long time on death row. Life itself is a death

sentence.

I have a lot more chance of being killed driving on the local expressway on

any given day than I do of dying from esrd or being on dialysis. Geez, even

the risk I take crossing the intersection in the morning to get my coffee

seems greater than the risk from esrd. I mean, I could get run over by a

speeding car, I could slip on the ice and break my neck or it my head on the

concrete curb, or a meteorite or a piece of man-made space debris could fall

from the sky and annihilate me... And then there's global warning, and other

geographic-type things. There's no end to the risks we take in every day

life. So, I don't see my thrice weekly dialysis treatment as a death

sentence at all. If anything, it's a life sentence.

So, I guess my message is, quit worrying about it, be positive, and enjoy

the life you have, within whatever your belief system is. I don't want to

hear anyone on this group talking about a " death sentence " , Ok!?

Pierre

[Guest guest]

Hats off to you, Pierre!

I agree a 100%. Thank you for having such a positive attitude!!!

-beth

[Guest guest]

I second that one. Moreover, unlike most glib medical optimism, from

everything I've seen, it's true.

Cy

Pierre Lachaine wrote:

An idea that I hear all the time, from people who aren't there yet, and from

people who don't have kidney disease themselves, and also from the media, is

the " it's a death sentence " thing. Well my friends, if it's a death sentence

to have esrd, it's a pretty long time on death row. Life itself is a death

sentence.

I have a lot more chance of being killed driving on the local expressway on

any given day than I do of dying from esrd or being on dialysis. Geez, even

the risk I take crossing the intersection in the morning to get my coffee

seems greater than the risk from esrd. I mean, I could get run over by a

speeding car, I could slip on the ice and break my neck or it my head on the

concrete curb, or a meteorite or a piece of man-made space debris could fall

from the sky and annihilate me... And then there's global warning, and other

geographic-type things. There's no end to the risks we take in every day

life. So, I don't see my thrice weekly dialysis treatment as a death

sentence at all. If anything, it's a life sentence.

So, I guess my message is, quit worrying about it, be positive, and enjoy

the life you have, within whatever your belief system is. I don't want to

hear anyone on this group talking about a " death sentence " , Ok!?

Pierre

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Visit our companion website at www.igan.ca. The site is entirely supported by

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Thank you

[Guest guest]

pierre,

well put!

christine

> An idea that I hear all the time, from people who aren't there yet,

and from

> people who don't have kidney disease themselves, and also from the

media, is

> the " it's a death sentence " thing. Well my friends, if it's a death

sentence

> to have esrd, it's a pretty long time on death row. Life itself is

a death

> sentence.

>

> I have a lot more chance of being killed driving on the local

expressway on

> any given day than I do of dying from esrd or being on dialysis.

Geez, even

> the risk I take crossing the intersection in the morning to get my

coffee

> seems greater than the risk from esrd. I mean, I could get run over

by a

> speeding car, I could slip on the ice and break my neck or it my

head on the

> concrete curb, or a meteorite or a piece of man-made space debris

could fall

> from the sky and annihilate me... And then there's global warning,

and other

> geographic-type things. There's no end to the risks we take in

every day

> life. So, I don't see my thrice weekly dialysis treatment as a death

> sentence at all. If anything, it's a life sentence.

>

> So, I guess my message is, quit worrying about it, be positive, and

enjoy

> the life you have, within whatever your belief system is. I don't

want to

> hear anyone on this group talking about a " death sentence " , Ok!?

>

> Pierre

[Guest guest]

" " I don't want to hear anyone on this group talking about a " death sentence " ,

Ok!? " "

*sniffle* Does this mean I can't use my favorite line anymore? ;o) " This isn't

a death sentence, it's a change of life sentence. "

You are so right Pierre. I have always told my kids that you are dying from the

day you are born so just live and enjoy the day.

Amy G.

Re: Kidney disease young, vs. later in life

An idea that I hear all the time, from people who aren't there yet, and from

people who don't have kidney disease themselves, and also from the media, is

the " it's a death sentence " thing. Well my friends, if it's a death sentence

to have esrd, it's a pretty long time on death row. Life itself is a death

sentence.

I have a lot more chance of being killed driving on the local expressway on

any given day than I do of dying from esrd or being on dialysis. Geez, even

the risk I take crossing the intersection in the morning to get my coffee

seems greater than the risk from esrd. I mean, I could get run over by a

speeding car, I could slip on the ice and break my neck or it my head on the

concrete curb, or a meteorite or a piece of man-made space debris could fall

from the sky and annihilate me... And then there's global warning, and other

geographic-type things. There's no end to the risks we take in every day

life. So, I don't see my thrice weekly dialysis treatment as a death

sentence at all. If anything, it's a life sentence.

So, I guess my message is, quit worrying about it, be positive, and enjoy

the life you have, within whatever your belief system is. I don't want to

hear anyone on this group talking about a " death sentence " , Ok!?

Pierre

To edit your settings for the group, go to our Yahoo Group

home page:

http://groups.yahoo.com/group/iga-nephropathy/

To unsubcribe via email,

iga-nephropathy-unsubscribe

Visit our companion website at www.igan.ca. The site is entirely supported by

donations. If you would like to help, go to:

http://www.igan.ca/id62.htm

Thank you

[Guest guest]

Kathleen,

I think you are on to something here. I also think that those of us in our

late 20's to early 40's tend to have young kids or aspirations of having

children. When we get hit with our diagnosis and the sometimes daily side

effects of medications or the disease it's rough. We are set in our life

pattern of working, taking care of children and house, and paying off the debt

we incurred in our early 20's. A major life change hits us older people hard

due to the responsibilities we already carry and the worry that we won't be able

to continue with them. I know my initial reaction is " How is this going to

affect my kids? " " What will happen to them if something happens to me? " As a

teen diagnosed there are problems to deal with but once you settle into the

routine it becomes part of your life and you build the responsibilities in your

life already adjusted to the fact that you have this disease.

I also talk about my disease to anyone who wants to know about it.

Partially to raise the awareness of live donor transplants since whenever you

say " I'm a kidney patient " the first question you get is " Are you on dialysis? "

and " What will happen when your kidneys fail? " I find this is a great

opportunity to educate people on live donor transplants....I know quite a few

people I've spoken with didn't even realize they did live donor kidney

transplants. I was being measured by the woman at Curves the other day and she

asked the " What will happen if your kidneys fail? " question. I answered, in a

very relaxed tone, " I'll either have a transplant from a live donor or cadaver

or go on dialysis. " She just looked at me and was in amazement...she said " Just

like that, you sound like it's second hand. " I think just letting people know

it's just part of our life now, yes a major disease but just part of our life

none the less, is helpful in combating the " pity " factor. Perhaps it's just the

teacher in me but I think it's good to educate people about diseases they have

no idea exist. Think about it, if the 100,000 or so people diagnosed each year

with IgAN told just 5 people each about this disease, that adds up to 500,000

people knowing about it's existence and about live donor transplant

opportunities. My hope is that it helps someone else down the road.

Amy G.

Kidney disease young, vs. later in life

Ruminating about Pierre's latest posting...

I find those of us who develop kidney disease at a younger age are

much more " well adjusted " to it than someone who is faced with it at a

much later stage in life - more accepting, maybe? Generally by the

time we know what's going on and what it means for the rest of our

life, we've gotten used to the protocol, doctor visits, meds, and

dietary restrictions, etc., etc. So it doesn't seem so earth shaking

when we're going through the first stages of the disease and it's

diagnosis.

The one thing that does bother me, however, is (what I call) the

" pitying attitude " of others. And having CKD for so long, and looking

about 10 years younger than I really am, I see it a lot. It's gotten

to the point where I don't strike up conversations in the patient

waiting room at the nephrologists anymore and don't mention it to

co-workers and friends unless it's absolutely necessary or I know them

really, really well. Most seem to feel that it's a death sentance,

because they don't know much about kidney disease, or they only see

very sick and worn out people on dialysis. Rather than being a death

sentance for me, it's helped me to appreciate life more than the

average person does. Plus, I was taught at a very young age that I

needed to be able to manage my health care.

Kathleen

To edit your settings for the group, go to our Yahoo Group

home page:

http://groups.yahoo.com/group/iga-nephropathy/

To unsubcribe via email,

iga-nephropathy-unsubscribe

Visit our companion website at www.igan.ca. The site is entirely supported by

donations. If you would like to help, go to:

http://www.igan.ca/id62.htm

Thank you

[Guest guest]

> An idea that I hear all the time, from people who aren't there yet,

and from

> people who don't have kidney disease themselves, and also from the

media, is

> the " it's a death sentence " thing. Well my friends, if it's a death

sentence

> to have esrd, it's a pretty long time on death row. Life itself is a

death

> sentence.

Very well put, Pierre. I put in my original post that those who were

unfamiliar with kidney disease or don't know about it, think that it's

a horrible thing that was something like a death sentance. I know

that it is NOT a death sentance, and I make every effort to correct

those with that understanding. I just don't usually go around

advertising the fact that I have chronic kidney disease and will

eventually end up with a transplant or on dialysis, mainly because

most people I interact with don't need to know. My life is impacted

by it, of course, and if someone asks about my fistula I'm very

forth-coming about it. I have found that most people are intriqued by

it, but are kind of put-off by the looks of my fistula. It's become

really lumpy and ropey - which is good, but they think that there's

some kind of machine or shunt in there. Once most of them overcome

their initial reaction and find out it's just my normal veins and

arteries, they're interested by what it is and how/why it's made.

Kind of a neat sociological study, too.

Kathleen

[Guest guest]

> An idea that I hear all the time, from people who aren't there yet,

and from

> people who don't have kidney disease themselves, and also from the

media, is

> the " it's a death sentence " thing. Well my friends, if it's a death

sentence

> to have esrd, it's a pretty long time on death row. Life itself is a

death

> sentence.

Very well put, Pierre. I put in my original post that those who were

unfamiliar with kidney disease or don't know about it, think that it's

a horrible thing that was something like a death sentance. I know

that it is NOT a death sentance, and I make every effort to correct

those with that understanding. I just don't usually go around

advertising the fact that I have chronic kidney disease and will

eventually end up with a transplant or on dialysis, mainly because

most people I interact with don't need to know. My life is impacted

by it, of course, and if someone asks about my fistula I'm very

forth-coming about it. I have found that most people are intriqued by

it, but are kind of put-off by the looks of my fistula. It's become

really lumpy and ropey - which is good, but they think that there's

some kind of machine or shunt in there. Once most of them overcome

their initial reaction and find out it's just my normal veins and

arteries, they're interested by what it is and how/why it's made.

Kind of a neat sociological study, too.

Kathleen

[Guest guest]

> Kathleen,

> I think you are on to something here. I also think that those

of us in our late 20's to early 40's tend to have young kids or

aspirations of having children. When we get hit with our diagnosis

and the sometimes daily side effects of medications or the disease

it's rough. We are set in our life pattern of working, taking care of

children and house, and paying off the debt we incurred in our early

20's. A major life change hits us older people hard due to the

responsibilities we already carry and the worry that we won't be able

to continue with them.

Exactly, Amy. I've been living with it since I was 9, so the dietary

restrictions and the medications are second-nature. My life choices

have also been affected by it because I needed to be forthcoming with

all of my potential long-term relationships, I had to chose jobs based

on health care coverage, I knew at a young age that getting pregnant

was a bad idea, and I needed to be somewhat close to a metropolitan

area in order to find good, accessible care. All of this has been

molded into the framework of my " health education " that my parents

instilled in me. I still call them with questions about care (mostly

confirming that I made the right decision and re-capping the options),

but it's mainly because they were both employed in the health care

field for years - dad was a hospital administrator and mom worked in

the ER. My husband is a wonderful " team mate " and is there for

whatever I need. In fact, it's funny, but when my bp starts to rise I

tend to get migraines - which my meds do nothing to mute the pain, and

last summer was really bad 5 weeks of migraine. So, I call and talk

to my nurse, she tells me to come in for a shot, he picks me up and

makes sure I have something to throw up in on the 5 minute ride home

(the 3rd time I did this he decided that we should just keep something

in his car, it was a rough summer...), and he puts me to bed with my

cell phone set on his office number right next to my pillow. Plus, on

top of all that, he gives really *really* good hugs.

So, I guess you could say that I've been " trained " at a young age to

know what to do or who to call with questions about my medical care or

with flare-ups. And yes, I did do some rapid growing up as a child

and was a bit more responsible at an earlier age, but I still had a

childhood and my parents still treated me as normal. As far as my

marriage goes, *I'm* the normal one - I married a really terrific guy

who's an engineer. Keeps life interesting, and me grounded.

Kathleen

[Guest guest]

Hi Kathleen

Thanks for a great series of posts. It's nice to hear some optimism and

positive attitude.

Most people never even notice my fistula. I guess maybe because it's on the

upper arm, so it's not that obvious even with a t-shirt. I don't often wear

alter tops, so that's not a problem : )

Friends and relatives who touch it think there is a motor in there. They

usually recoil in horror as soon as they feel it, just like some people do

at the sight of blood : )

....and everyone has a hard time understanding the concept that it's just an

enlarged vein connected to an artery.

It's not too pretty this morning though. Two treatments ago, the nurse had

to re-needle my arterial because the first one hurt. I told her I thought

the tip was touching the wall of the artery, so she removed it and put in a

second one in a different way. It didn't look at the time like there was any

" infiltration " , which is what they call it when blood leaks out of the

fistula into surrounding tissue, but this morning, it's all black and blue

on one side - so that must be what happened (ie. the needle tip must have

caused a very slow leak). It looks exactly like severe bruising - but it

should gradually disappear over the next week or so. If I ever do get into

home hemo, that would be one good thing about it: needling myself. I might

be a little squeamish at first, but it's something I look forward to having

more control over.

Pierre

Re: Kidney disease young, vs. later in life

>

>

> > An idea that I hear all the time, from people who aren't there yet,

> and from

> > people who don't have kidney disease themselves, and also from the

> media, is

> > the " it's a death sentence " thing. Well my friends, if it's a death

> sentence

> > to have esrd, it's a pretty long time on death row. Life itself is a

> death

> > sentence.

>

> Very well put, Pierre. I put in my original post that those who were

> unfamiliar with kidney disease or don't know about it, think that it's

> a horrible thing that was something like a death sentance. I know

> that it is NOT a death sentance, and I make every effort to correct

> those with that understanding. I just don't usually go around

> advertising the fact that I have chronic kidney disease and will

> eventually end up with a transplant or on dialysis, mainly because

> most people I interact with don't need to know. My life is impacted

> by it, of course, and if someone asks about my fistula I'm very

> forth-coming about it. I have found that most people are intriqued by

> it, but are kind of put-off by the looks of my fistula. It's become

> really lumpy and ropey - which is good, but they think that there's

> some kind of machine or shunt in there. Once most of them overcome

> their initial reaction and find out it's just my normal veins and

> arteries, they're interested by what it is and how/why it's made.

> Kind of a neat sociological study, too.

>

> Kathleen

>

>

[Guest guest]

I am in complete agreement Pierre! And Amy, your line is perfect. It IS

just a change of life, not a death sentence. If anything, IgAN is a blessing in

that it certainly makes you count your blessings and appreciate life much more

:-)

In a message dated 12/17/2004 2:17:05 PM Pacific Standard Time,

purrfect@... writes:

> *sniffle* Does this mean I can't use my favorite line anymore? ;o) " This

> isn't a death sentence, it's a change of life sentence. "

>

> You are so right Pierre. I have always told my kids that you are dying from

> the day you are born so just live and enjoy the day.

>

> Amy G.

[Guest guest]

I am in complete agreement Pierre! And Amy, your line is perfect. It IS

just a change of life, not a death sentence. If anything, IgAN is a blessing in

that it certainly makes you count your blessings and appreciate life much more

:-)

In a message dated 12/17/2004 2:17:05 PM Pacific Standard Time,

purrfect@... writes:

> *sniffle* Does this mean I can't use my favorite line anymore? ;o) " This

> isn't a death sentence, it's a change of life sentence. "

>

> You are so right Pierre. I have always told my kids that you are dying from

> the day you are born so just live and enjoy the day.

>

> Amy G.

[Guest guest]

I am in complete agreement Pierre! And Amy, your line is perfect. It IS

just a change of life, not a death sentence. If anything, IgAN is a blessing in

that it certainly makes you count your blessings and appreciate life much more

:-)

In a message dated 12/17/2004 2:17:05 PM Pacific Standard Time,

purrfect@... writes:

> *sniffle* Does this mean I can't use my favorite line anymore? ;o) " This

> isn't a death sentence, it's a change of life sentence. "

>

> You are so right Pierre. I have always told my kids that you are dying from

> the day you are born so just live and enjoy the day.

>

> Amy G.

[Guest guest]

Kathleen,

You are very blessed to have such a treasure for a husband!

In a message dated 12/17/2004 9:37:12 PM Pacific Standard Time,

kmadsen12000@... writes:

> My husband is a wonderful " team mate " and is there for

> whatever I need. In fact, it's funny, but when my bp starts to rise I

> tend to get migraines - which my meds do nothing to mute the pain, and

> last summer was really bad 5 weeks of migraine. So, I call and talk

> to my nurse, she tells me to come in for a shot, he picks me up and

> makes sure I have something to throw up in on the 5 minute ride home

> (the 3rd time I did this he decided that we should just keep something

> in his car, it was a rough summer...), and he puts me to bed with my

> cell phone set on his office number right next to my pillow. Plus, on

> top of all that, he gives really *really* good hugs.

>

> So, I guess you could say that I've been " trained " at a young age to

> know what to do or who to call with questions about my medical care or

> with flare-ups. And yes, I did do some rapid growing up as a child

> and was a bit more responsible at an earlier age, but I still had a

> childhood and my parents still treated me as normal. As far as my

> marriage goes, *I'm* the normal one - I married a really terrific guy

> who's an engineer. Keeps life interesting, and me grounded.

>

> Kathleen

>

[Guest guest]

Amy:

That's great that you are working to raise awareness. I've done a couple of

presentations to groups, and one to Bar/Bat Mitzvah candidates who have to do a

Mitzvah (good deed) project, hoping that one would choose organ donation

awareness as their project.

Talking to people, I ask them who likes to wait on line, like at the movies. No

one volunteers. So then I say what if you didn't see the movie, you could die,

who would wait on line. Most, if not all, raise their hands. Then I ask them how

they would feel if the line for movie was 5 years long, and everyday they

waited, they might not make it, or they'd have to spend time hooked to a

machine. I tell that that is what it is like everyday for someone waiting on the

organ list. I got a lot of comments from parents in the room asking how to

become a donor.

Amy Griswold wrote:

Kathleen,

I think you are on to something here. I also think that those of us in our

late 20's to early 40's tend to have young kids or aspirations of having

children. When we get hit with our diagnosis and the sometimes daily side

effects of medications or the disease it's rough. We are set in our life

pattern of working, taking care of children and house, and paying off the debt

we incurred in our early 20's. A major life change hits us older people hard

due to the responsibilities we already carry and the worry that we won't be able

to continue with them. I know my initial reaction is " How is this going to

affect my kids? " " What will happen to them if something happens to me? " As a

teen diagnosed there are problems to deal with but once you settle into the

routine it becomes part of your life and you build the responsibilities in your

life already adjusted to the fact that you have this disease.

I also talk about my disease to anyone who wants to know about it.

Partially to raise the awareness of live donor transplants since whenever you

say " I'm a kidney patient " the first question you get is " Are you on dialysis? "

and " What will happen when your kidneys fail? " I find this is a great

opportunity to educate people on live donor transplants....I know quite a few

people I've spoken with didn't even realize they did live donor kidney

transplants. I was being measured by the woman at Curves the other day and she

asked the " What will happen if your kidneys fail? " question. I answered, in a

very relaxed tone, " I'll either have a transplant from a live donor or cadaver

or go on dialysis. " She just looked at me and was in amazement...she said " Just

like that, you sound like it's second hand. " I think just letting people know

it's just part of our life now, yes a major disease but just part of our life

none the less, is helpful in combating the " pity " factor. Perhaps it's

just the teacher in me but I think it's good to educate people about diseases

they have no idea exist. Think about it, if the 100,000 or so people diagnosed

each year with IgAN told just 5 people each about this disease, that adds up to

500,000 people knowing about it's existence and about live donor transplant

opportunities. My hope is that it helps someone else down the road.

Amy G.

Kidney disease young, vs. later in life

Ruminating about Pierre's latest posting...

I find those of us who develop kidney disease at a younger age are

much more " well adjusted " to it than someone who is faced with it at a

much later stage in life - more accepting, maybe? Generally by the

time we know what's going on and what it means for the rest of our

life, we've gotten used to the protocol, doctor visits, meds, and

dietary restrictions, etc., etc. So it doesn't seem so earth shaking

when we're going through the first stages of the disease and it's

diagnosis.

The one thing that does bother me, however, is (what I call) the

" pitying attitude " of others. And having CKD for so long, and looking

about 10 years younger than I really am, I see it a lot. It's gotten

to the point where I don't strike up conversations in the patient

waiting room at the nephrologists anymore and don't mention it to

co-workers and friends unless it's absolutely necessary or I know them

really, really well. Most seem to feel that it's a death sentance,

because they don't know much about kidney disease, or they only see

very sick and worn out people on dialysis. Rather than being a death

sentance for me, it's helped me to appreciate life more than the

average person does. Plus, I was taught at a very young age that I

needed to be able to manage my health care.

Kathleen

To edit your settings for the group, go to our Yahoo Group

home page:

http://groups.yahoo.com/group/iga-nephropathy/

To unsubcribe via email,

iga-nephropathy-unsubscribe

Visit our companion website at www.igan.ca. The site is entirely supported by

donations. If you would like to help, go to:

http://www.igan.ca/id62.htm

Thank you

[Guest guest]

Hi ,

Thank you so much for all you are doing to raise awareness. I really like the

analogy of standing in line to watch a movie! That is something everyone can

understand. I think I will borrow that analogy for people I talk to if you

don't mind, but I will give you credit for coming up with the idea :-)

In a message dated 12/20/2004 9:25:26 AM Eastern Standard Time, Cohen

writes:

>

>Amy:

>

>That's great that you are working to raise awareness. I've done a couple of

presentations to groups, and one to Bar/Bat Mitzvah candidates who have to do a

Mitzvah (good deed) project, hoping that one would choose organ donation

awareness as their project.

>

>Talking to people, I ask them who likes to wait on line, like at the movies. No

one volunteers. So then I say what if you didn't see the movie, you could die,

who would wait on line. Most, if not all, raise their hands. Then I ask them how

they would feel if the line for movie was 5 years long, and everyday they

waited, they might not make it, or they'd have to spend time hooked to a

machine. I tell that that is what it is like everyday for someone waiting on the

organ list. I got a lot of comments from parents in the room asking how to

become a donor.

>

>

>

>Amy Griswold wrote:

>Kathleen,

>    I think you are on to something here.  I also think that those of us in our

late 20's to early 40's tend to have young kids or aspirations of having

children.  When we get hit with our diagnosis and the sometimes daily side

effects of medications or the disease it's rough.  We are set in our life

pattern of working, taking care of children and house, and paying off the debt

we incurred in our early 20's.  A major life change hits us older people hard

due to the responsibilities we already carry and the worry that we won't be able

to continue with them.  I know my initial reaction is " How is this going to

affect my kids? "   " What will happen to them if something happens to me? "  As a

teen diagnosed there are problems to deal with but once you settle into the

routine it becomes part of your life and you build the responsibilities in your

life already adjusted to the fact that you have this disease.  

>    I also talk about my disease to anyone who wants to know about it.

 Partially to raise the awareness of live donor transplants since whenever you

say " I'm a kidney patient " the first question you get is " Are you on dialysis? "

and " What will happen when your kidneys fail? "  I find this is a great

opportunity to educate people on live donor transplants....I know quite a few

people I've spoken with didn't even realize they did live donor kidney

transplants.  I was being measured by the woman at Curves the other day and she

asked the " What will happen if your kidneys fail? " question.  I answered, in a

very relaxed tone, " I'll either have a transplant from a live donor or cadaver

or go on dialysis. "  She just looked at me and was in amazement...she said " Just

like that, you sound like it's second hand. "  I think just letting people know

it's just part of our life now, yes a major disease but just part of our life

none the less, is helpful in combating the " pity " factor. Perhaps it's

> just the teacher in me but I think it's good to educate people about diseases

they have no idea exist.  Think about it, if the 100,000 or so people diagnosed

each year with IgAN told just 5 people each about this disease, that adds up to

500,000 people knowing about it's existence and about live donor transplant

opportunities.  My hope is that it helps someone else down the road.

>

>Amy G.

>   Kidney disease young, vs. later in life

>

>

>

>  Ruminating about Pierre's latest posting...

>

>  I find those of us who develop kidney disease at a younger age are

>  much more " well adjusted " to it than someone who is faced with it at a

>  much later stage in life - more accepting, maybe?  Generally by the

>  time we know what's going on and what it means for the rest of our

>  life, we've gotten used to the protocol, doctor visits, meds, and

>  dietary restrictions, etc., etc.  So it doesn't seem so earth shaking

>  when we're going through the first stages of the disease and it's

>  diagnosis.

>

>  The one thing that does bother me, however, is (what I call) the

>   " pitying attitude " of others.  And having CKD for so long, and looking

>  about 10 years younger than I really am, I see it a lot.  It's gotten

>  to the point where I don't strike up conversations in the patient

>  waiting room at the nephrologists anymore and don't mention it to

>  co-workers and friends unless it's absolutely necessary or I know them

>  really, really well.  Most seem to feel that it's a death sentance,

>  because they don't know much about kidney disease, or they only see

>  very sick and worn out people on dialysis.  Rather than being a death

>  sentance for me, it's helped me to appreciate life more than the

>  average person does.  Plus, I was taught at a very young age that I

>  needed to be able to manage my health care.

>

>  Kathleen

>

>

>

>

>

>

>

>  To edit your settings for the group, go to our Yahoo Group

>  home page:

>  http://groups.yahoo.com/group/iga-nephropathy/

>

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>  iga-nephropathy-unsubscribe

>  Visit our companion website at www.igan.ca. The site is entirely supported by

donations. If you would like to help, go to:

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>

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>

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>        

[Guest guest]

,

What an awesome analogy. We just wrapped up Mitzvah Day at 's School.

How I wish we had you & Barb here for presentations!

Cy

Kidney disease young, vs. later in life

>

>

>

> Ruminating about Pierre's latest posting...

>

> I find those of us who develop kidney disease at a younger age are

> much more " well adjusted " to it than someone who is faced with it at a

> much later stage in life - more accepting, maybe? Generally by the

> time we know what's going on and what it means for the rest of our

> life, we've gotten used to the protocol, doctor visits, meds, and

> dietary restrictions, etc., etc. So it doesn't seem so earth shaking

> when we're going through the first stages of the disease and it's

> diagnosis.

>

> The one thing that does bother me, however, is (what I call) the

> " pitying attitude " of others. And having CKD for so long, and looking

> about 10 years younger than I really am, I see it a lot. It's gotten

> to the point where I don't strike up conversations in the patient

> waiting room at the nephrologists anymore and don't mention it to

> co-workers and friends unless it's absolutely necessary or I know them

> really, really well. Most seem to feel that it's a death sentance,

> because they don't know much about kidney disease, or they only see

> very sick and worn out people on dialysis. Rather than being a death

> sentance for me, it's helped me to appreciate life more than the

> average person does. Plus, I was taught at a very young age that I

> needed to be able to manage my health care.

>

> Kathleen

>

>

>

>

>

>

>

> To edit your settings for the group, go to our Yahoo Group

> home page:

> http://groups.yahoo.com/group/iga-nephropathy/

>

> To unsubcribe via email,

> iga-nephropathy-unsubscribe

> Visit our companion website at www.igan.ca. The site is entirely

supported by donations. If you would like to help, go to:

> http://www.igan.ca/id62.htm

>

> Thank you

>

>

>

[Guest guest]

Hey ,

Since you don't have a ©, then I will steal that AND the point idea.

Anything to raise awareness :-)

In a message dated 12/20/2004 10:23:34 AM Pacific Standard Time,

garymattcohen@... writes:

> , since I have no © on it, go right ahead. I think that anything

> that a " normal " person can understand works. I also made up an " average "

workday

> with points (like the spoon story) that I have adults take. After they give

> me their score, I say " OK, now take away half your points and let's see what

> you're willing to give up. " I tell them that is a decision " we " need to make

> everyday - what we can and cannot do just because we don't have all that

> energy.

>

>

>