Re: How do you respond to....

[Guest guest]

You may not " get well soon " but the more important thing is that you may not

get worse too. This disease can go into a holding pattern and effectively be

in remission. In the last 2 weeks my creatinine has decreased from 2.8 to 2.3

and my hemoglobin has increased to normal levels so I am no longer anemic (even

though still tired). I try to think of it as just another bump in the road,

IGAN that is, and something that I may not " recover " from, but definitely

something that is not going to slow me down either. My friends also are

concerned,

and probably more concerned that I am with my cavalier attitude. I do believe

that positive attitude begets positive results.

Just my thoughts.

[Guest guest]

Hi Amy,

I just tell them I appreciate their concern for me and leave it at that. I

know they mean well, so I just thank them. If it is someone who I really want

to know more details, then I tell them that I have a chronic condition that is

a permanent one, but it all depends on who it is that is that I am talking

to.

Sorry about the septic tank...you needed one more thing to deal with didn't

you :-)

[Guest guest]

Hi Amy,

I just tell them I appreciate their concern for me and leave it at that. I

know they mean well, so I just thank them. If it is someone who I really want

to know more details, then I tell them that I have a chronic condition that is

a permanent one, but it all depends on who it is that is that I am talking

to.

Sorry about the septic tank...you needed one more thing to deal with didn't

you :-)

[Guest guest]

Hi Amy,

I just tell them I appreciate their concern for me and leave it at that. I

know they mean well, so I just thank them. If it is someone who I really want

to know more details, then I tell them that I have a chronic condition that is

a permanent one, but it all depends on who it is that is that I am talking

to.

Sorry about the septic tank...you needed one more thing to deal with didn't

you :-)

[Guest guest]

Wow ! And the good news just keeps on coming this week! Thanks for

sharing yours. That is great news both about the anemia and about the

creatinine

going down. Yeah!!!!! Keep up the positive attitude :-)

[Guest guest]

Wow ! And the good news just keeps on coming this week! Thanks for

sharing yours. That is great news both about the anemia and about the

creatinine

going down. Yeah!!!!! Keep up the positive attitude :-)

[Guest guest]

Wow ! And the good news just keeps on coming this week! Thanks for

sharing yours. That is great news both about the anemia and about the

creatinine

going down. Yeah!!!!! Keep up the positive attitude :-)

[Guest guest]

Amy, I know exactly what you mean. I just want to ring their

neck...especially when they say " im sorry that you have to go

through this " ...i know they mean well, but...argh..anyways, my

response usually to the get well soon statment is " thanks, we'll see "

Hope all is well in your neck of the woods!

>

> How do you respond to people saying " I hope you get well soon " ? I

just

> don't know how to respond to this when people say it. Right now I

sort

> of smile and shake my head yes...but I'm getting to the point

where I

> want to scream " WELL THAT WILL NEVER HAPPEN! " or say " Not in this

> lifetime " or something sarcastic like that. So does anyone have a

good

> response to " Get well soon " when you know darn well you won't ever

be

> " getting well " ?

>

> Amy...who could use some more sleep but is waiting on the septic

guys to

> come pump the tank.

[Guest guest]

Hi ,

This is one I hear all the time too. I love your T-shirt idea :-)

a message dated 4/2/2004 1:19:50 PM Pacific Standard Time,

garymattcohen@... writes:

> " Wow, you don't look sick. " I love that one - maybe I should check if they

> have some med that can make me look sick too, or I'll get a shirt that says

> " It's better to look good than to feel good " or " I'm with the sick guy " that

> has an arrow pointing up.

[Guest guest]

, I know that it's important to keep a positive attitude and for the

most part I do. I smile and nod and generally thank them for their concern.

It just gets wearing when in your head you get this...ya right...go thru

every time you hear that " get well " . I also don't think most people know

what to say when faced with a person who isn't going to " get well " . We need

to come up with a new catch phrase like " I hope things continue to go well

for you " or " Keep on keepin' on " or something like that. ) By the way

Congratulations on your great lab results. I just got a great set of

results on Thursday that resulted in my prednisone dose going lower. Good

news abounds.

that " you don't look sick " thing gets me too! Ohhhh the times I've

heard that in the mere 7 months since I found out about this. Most days I

don't feel sick either but dang how are you supposed to look when your

kidneys are failing? Perhaps if we get a makeup artist to work on it we can

all " look sick " so people know. Heck even on prednisone you just look like

you have a cubby face and have put on weight. (something that is

commonplace in our society so nobody thinks anything of it. LOL!) I love

your friends response and will be using that one in future on some of my

more sarcastic friends.

Oh and the septic tank wasn't a big deal thing just a regular

maintanance thing...it hadn't been pumped in close to 4 years and was in

need of it before we ended up with problems. The worst part was having to

get up early to wait for the guy to get here. Hehehehe...

Amy

[Guest guest]

, I know that it's important to keep a positive attitude and for the

most part I do. I smile and nod and generally thank them for their concern.

It just gets wearing when in your head you get this...ya right...go thru

every time you hear that " get well " . I also don't think most people know

what to say when faced with a person who isn't going to " get well " . We need

to come up with a new catch phrase like " I hope things continue to go well

for you " or " Keep on keepin' on " or something like that. ) By the way

Congratulations on your great lab results. I just got a great set of

results on Thursday that resulted in my prednisone dose going lower. Good

news abounds.

that " you don't look sick " thing gets me too! Ohhhh the times I've

heard that in the mere 7 months since I found out about this. Most days I

don't feel sick either but dang how are you supposed to look when your

kidneys are failing? Perhaps if we get a makeup artist to work on it we can

all " look sick " so people know. Heck even on prednisone you just look like

you have a cubby face and have put on weight. (something that is

commonplace in our society so nobody thinks anything of it. LOL!) I love

your friends response and will be using that one in future on some of my

more sarcastic friends.

Oh and the septic tank wasn't a big deal thing just a regular

maintanance thing...it hadn't been pumped in close to 4 years and was in

need of it before we ended up with problems. The worst part was having to

get up early to wait for the guy to get here. Hehehehe...

Amy

[Guest guest]

That's a hard one. I think I raised that one with Pierre when I first

started on this board. I've come 'round to agreeing with him that the best

you can do is thank them for their good wishes, however mis-construed.

However, I really do like screaming " WELL THAT WILL NEVER HAPPEN! " . When

was dying, some people, including his mum, sent him all sorts of

terminally perky and cheery get well cards. It is a very good thing that I

was hopelessly busy, because I might have started acting on some of my

sincere wishes...

Cy

How do you respond to....

>

> How do you respond to people saying " I hope you get well soon " ? I just

> don't know how to respond to this when people say it. Right now I sort

> of smile and shake my head yes...but I'm getting to the point where I

> want to scream " WELL THAT WILL NEVER HAPPEN! " or say " Not in this

> lifetime " or something sarcastic like that. So does anyone have a good

> response to " Get well soon " when you know darn well you won't ever be

> " getting well " ?

>

> Amy...who could use some more sleep but is waiting on the septic guys to

> come pump the tank.

>

>

>

>

>

> 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]

That's a hard one. I think I raised that one with Pierre when I first

started on this board. I've come 'round to agreeing with him that the best

you can do is thank them for their good wishes, however mis-construed.

However, I really do like screaming " WELL THAT WILL NEVER HAPPEN! " . When

was dying, some people, including his mum, sent him all sorts of

terminally perky and cheery get well cards. It is a very good thing that I

was hopelessly busy, because I might have started acting on some of my

sincere wishes...

Cy

How do you respond to....

>

> How do you respond to people saying " I hope you get well soon " ? I just

> don't know how to respond to this when people say it. Right now I sort

> of smile and shake my head yes...but I'm getting to the point where I

> want to scream " WELL THAT WILL NEVER HAPPEN! " or say " Not in this

> lifetime " or something sarcastic like that. So does anyone have a good

> response to " Get well soon " when you know darn well you won't ever be

> " getting well " ?

>

> Amy...who could use some more sleep but is waiting on the septic guys to

> come pump the tank.

>

>

>

>

>

> 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]

Congrats on that creatinine increase - and especially getting the

anemia under control. The anemia is a real life changer. I know it's made

all the difference in the world in our house to get 's anemia under

control!

Cy

Re: How do you respond to....

> You may not " get well soon " but the more important thing is that you may

not

> get worse too. This disease can go into a holding pattern and effectively

be

> in remission. In the last 2 weeks my creatinine has decreased from 2.8 to

2.3

> and my hemoglobin has increased to normal levels so I am no longer anemic

(even

> though still tired). I try to think of it as just another bump in the

road,

> IGAN that is, and something that I may not " recover " from, but definitely

> something that is not going to slow me down either. My friends also are

concerned,

> and probably more concerned that I am with my cavalier attitude. I do

believe

> that positive attitude begets positive results.

> Just my thoughts.

>

>

>

>

[Guest guest]

Congrats on that creatinine increase - and especially getting the

anemia under control. The anemia is a real life changer. I know it's made

all the difference in the world in our house to get 's anemia under

control!

Cy

Re: How do you respond to....

> You may not " get well soon " but the more important thing is that you may

not

> get worse too. This disease can go into a holding pattern and effectively

be

> in remission. In the last 2 weeks my creatinine has decreased from 2.8 to

2.3

> and my hemoglobin has increased to normal levels so I am no longer anemic

(even

> though still tired). I try to think of it as just another bump in the

road,

> IGAN that is, and something that I may not " recover " from, but definitely

> something that is not going to slow me down either. My friends also are

concerned,

> and probably more concerned that I am with my cavalier attitude. I do

believe

> that positive attitude begets positive results.

> Just my thoughts.

>

>

>

>

[Guest guest]

Congrats on that creatinine increase - and especially getting the

anemia under control. The anemia is a real life changer. I know it's made

all the difference in the world in our house to get 's anemia under

control!

Cy

Re: How do you respond to....

> You may not " get well soon " but the more important thing is that you may

not

> get worse too. This disease can go into a holding pattern and effectively

be

> in remission. In the last 2 weeks my creatinine has decreased from 2.8 to

2.3

> and my hemoglobin has increased to normal levels so I am no longer anemic

(even

> though still tired). I try to think of it as just another bump in the

road,

> IGAN that is, and something that I may not " recover " from, but definitely

> something that is not going to slow me down either. My friends also are

concerned,

> and probably more concerned that I am with my cavalier attitude. I do

believe

> that positive attitude begets positive results.

> Just my thoughts.

>

>

>

>

[Guest guest]

Hi Amy,

I get a lot of well-meaning responses like that.

If it's an acquaintance, I just simply smile and thank them. I

focus on the fact that they have good intentions, and I try not to

think about the fact I will never get well....it just hurts too much.

If it's a friend, I usually like to explain to them how my disease

is a chronic illness, won't get better, blah blah blah. And then

explain how I will carry on with a full life and positive attitude

despite it. My friends, they are very understanding and won't make

the same mistake again. : )

Sophia

>

> How do you respond to people saying " I hope you get well soon " ? I

just

> don't know how to respond to this when people say it. Right now I

sort

> of smile and shake my head yes...but I'm getting to the point

where I

> want to scream " WELL THAT WILL NEVER HAPPEN! " or say " Not in this

> lifetime " or something sarcastic like that. So does anyone have a

good

> response to " Get well soon " when you know darn well you won't ever

be

> " getting well " ?

>

> Amy...who could use some more sleep but is waiting on the septic

guys to

> come pump the tank.

[Guest guest]

Hi Amy,

I get a lot of well-meaning responses like that.

If it's an acquaintance, I just simply smile and thank them. I

focus on the fact that they have good intentions, and I try not to

think about the fact I will never get well....it just hurts too much.

If it's a friend, I usually like to explain to them how my disease

is a chronic illness, won't get better, blah blah blah. And then

explain how I will carry on with a full life and positive attitude

despite it. My friends, they are very understanding and won't make

the same mistake again. : )

Sophia

>

> How do you respond to people saying " I hope you get well soon " ? I

just

> don't know how to respond to this when people say it. Right now I

sort

> of smile and shake my head yes...but I'm getting to the point

where I

> want to scream " WELL THAT WILL NEVER HAPPEN! " or say " Not in this

> lifetime " or something sarcastic like that. So does anyone have a

good

> response to " Get well soon " when you know darn well you won't ever

be

> " getting well " ?

>

> Amy...who could use some more sleep but is waiting on the septic

guys to

> come pump the tank.

[Guest guest]

Hi Amy,

I get a lot of well-meaning responses like that.

If it's an acquaintance, I just simply smile and thank them. I

focus on the fact that they have good intentions, and I try not to

think about the fact I will never get well....it just hurts too much.

If it's a friend, I usually like to explain to them how my disease

is a chronic illness, won't get better, blah blah blah. And then

explain how I will carry on with a full life and positive attitude

despite it. My friends, they are very understanding and won't make

the same mistake again. : )

Sophia

>

> How do you respond to people saying " I hope you get well soon " ? I

just

> don't know how to respond to this when people say it. Right now I

sort

> of smile and shake my head yes...but I'm getting to the point

where I

> want to scream " WELL THAT WILL NEVER HAPPEN! " or say " Not in this

> lifetime " or something sarcastic like that. So does anyone have a

good

> response to " Get well soon " when you know darn well you won't ever

be

> " getting well " ?

>

> Amy...who could use some more sleep but is waiting on the septic

guys to

> come pump the tank.

[Guest guest]

This was a problem I had when my son was born. He has Down Syndrome

and had surgery when he was 3 days old, it tore me up for people to

tell us " get well soon " it's like " HE WAS BORN THIS WAY " Anyone can

look at my son and see the DS features, there is no hideing it. I

had a friend who asked if he could " grow out of it " I kinda giggled

and shrugged them off.

If they want to put in thier 2 cents I tell them to pray for me. I'm

not big on religion but every drop helps.

BRANDY

>

> How do you respond to people saying " I hope you get well soon " ? I

just

> don't know how to respond to this when people say it. Right now I

sort

> of smile and shake my head yes...but I'm getting to the point where

I

> want to scream " WELL THAT WILL NEVER HAPPEN! " or say " Not in this

> lifetime " or something sarcastic like that. So does anyone have a

good

> response to " Get well soon " when you know darn well you won't ever

be

> " getting well " ?

>

> Amy...who could use some more sleep but is waiting on the septic

guys to

> come pump the tank.

[Guest guest]

This was a problem I had when my son was born. He has Down Syndrome

and had surgery when he was 3 days old, it tore me up for people to

tell us " get well soon " it's like " HE WAS BORN THIS WAY " Anyone can

look at my son and see the DS features, there is no hideing it. I

had a friend who asked if he could " grow out of it " I kinda giggled

and shrugged them off.

If they want to put in thier 2 cents I tell them to pray for me. I'm

not big on religion but every drop helps.

BRANDY

>

> How do you respond to people saying " I hope you get well soon " ? I

just

> don't know how to respond to this when people say it. Right now I

sort

> of smile and shake my head yes...but I'm getting to the point where

I

> want to scream " WELL THAT WILL NEVER HAPPEN! " or say " Not in this

> lifetime " or something sarcastic like that. So does anyone have a

good

> response to " Get well soon " when you know darn well you won't ever

be

> " getting well " ?

>

> Amy...who could use some more sleep but is waiting on the septic

guys to

> come pump the tank.

[Guest guest]

This was a problem I had when my son was born. He has Down Syndrome

and had surgery when he was 3 days old, it tore me up for people to

tell us " get well soon " it's like " HE WAS BORN THIS WAY " Anyone can

look at my son and see the DS features, there is no hideing it. I

had a friend who asked if he could " grow out of it " I kinda giggled

and shrugged them off.

If they want to put in thier 2 cents I tell them to pray for me. I'm

not big on religion but every drop helps.

BRANDY

>

> How do you respond to people saying " I hope you get well soon " ? I

just

> don't know how to respond to this when people say it. Right now I

sort

> of smile and shake my head yes...but I'm getting to the point where

I

> want to scream " WELL THAT WILL NEVER HAPPEN! " or say " Not in this

> lifetime " or something sarcastic like that. So does anyone have a

good

> response to " Get well soon " when you know darn well you won't ever

be

> " getting well " ?

>

> Amy...who could use some more sleep but is waiting on the septic

guys to

> come pump the tank.

[Guest guest]

I agree it a pain but " You don't look sick " is worse of the two. If

you ever find a T'Shirt that says " I look better than I fell " let me

know I want a couple. It would save a lot of time telling people I

could just wear it when I am having a bad day.

Martha

>

> How do you respond to people saying " I hope you get well soon " ? I

just

> don't know how to respond to this when people say it. Right now I

sort

> of smile and shake my head yes...but I'm getting to the point where

I

> want to scream " WELL THAT WILL NEVER HAPPEN! " or say " Not in this

> lifetime " or something sarcastic like that. So does anyone have a

good

> response to " Get well soon " when you know darn well you won't ever

be

> " getting well " ?

>

> Amy...who could use some more sleep but is waiting on the septic

guys to

> come pump the tank.

[Guest guest]

I agree it a pain but " You don't look sick " is worse of the two. If

you ever find a T'Shirt that says " I look better than I fell " let me

know I want a couple. It would save a lot of time telling people I

could just wear it when I am having a bad day.

Martha

>

> How do you respond to people saying " I hope you get well soon " ? I

just

> don't know how to respond to this when people say it. Right now I

sort

> of smile and shake my head yes...but I'm getting to the point where

I

> want to scream " WELL THAT WILL NEVER HAPPEN! " or say " Not in this

> lifetime " or something sarcastic like that. So does anyone have a

good

> response to " Get well soon " when you know darn well you won't ever

be

> " getting well " ?

>

> Amy...who could use some more sleep but is waiting on the septic

guys to

> come pump the tank.