Rogue cars, buses, and other cliches.

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just1more

New member
I got this a lot last week from 'idiots' after my son was in the hospital for a week.
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<br />We ended up being flown to our primary hospital where they ended up banding two bleeding varices in his esophagus (he has CF-caused liver cirrhosis). Yet, then people ask, "oh so is he better now" as if he has been fixed. How am I supposed to answer that? Yes, he stopped bleeding and we are home, but nobody can think this is normal or something good; and frankly NO he is not better this is a progression in his liver issues I was not ready for at 9!
 
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hmw

New member
<div class="FTQUOTE"><begin quote>The bus one gets to me also. My daughter is pretty healthy for the most part, so we live a fairly normal life and are not going around depressed over her disease. But sometimes, especially when someone from one of the CF forums passes, I can get a little down for awhile. I think I am entitled to grieve that my daughter won't live a "normal" life span. Anyway, the next time someone tries to "comfort" me by letting me know no one is guaranteed long life...you could get hit by a bus tomorrow...I want to say, "Your kid is on the sidewalk, my kid is in the middle of the road. Who do you think will get hit by the bus?!"</end quote></div> SO well said!!!!
 
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hmw

New member
<div class="FTQUOTE"><begin quote>The bus one gets to me also. My daughter is pretty healthy for the most part, so we live a fairly normal life and are not going around depressed over her disease. But sometimes, especially when someone from one of the CF forums passes, I can get a little down for awhile. I think I am entitled to grieve that my daughter won't live a "normal" life span. Anyway, the next time someone tries to "comfort" me by letting me know no one is guaranteed long life...you could get hit by a bus tomorrow...I want to say, "Your kid is on the sidewalk, my kid is in the middle of the road. Who do you think will get hit by the bus?!"</end quote> SO well said!!!!
 
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hmw

New member
<p><div class="FTQUOTE"><begin quote>The bus one gets to me also. My daughter is pretty healthy for the most part, so we live a fairly normal life and are not going around depressed over her disease. But sometimes, especially when someone from one of the CF forums passes, I can get a little down for awhile. I think I am entitled to grieve that my daughter won't live a "normal" life span. <br /> <br />Anyway, the next time someone tries to "comfort" me by letting me know no one is guaranteed long life...you could get hit by a bus tomorrow...I want to say, "Your kid is on the sidewalk, my kid is in the middle of the road. Who do you think will get hit by the bus?!"</end quote> <br />SO well said!!!!
 
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Rebjane

Super Moderator
Teri,

I love what you said ,too! One things that annoys me and I KNOW they don't mean too, but because I am a nurse people always say how my daughter is so lucky I am her mom. One time someone said it; she was actually being very sweet and I looked at her and said "I think I'm pretty lucky to have Maggie to be MY daughter".
 
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Rebjane

Super Moderator
Teri,

I love what you said ,too! One things that annoys me and I KNOW they don't mean too, but because I am a nurse people always say how my daughter is so lucky I am her mom. One time someone said it; she was actually being very sweet and I looked at her and said "I think I'm pretty lucky to have Maggie to be MY daughter".
 
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Rebjane

Super Moderator
Teri,
<br />
<br />I love what you said ,too! One things that annoys me and I KNOW they don't mean too, but because I am a nurse people always say how my daughter is so lucky I am her mom. One time someone said it; she was actually being very sweet and I looked at her and said "I think I'm pretty lucky to have Maggie to be MY daughter".
 
C

chrissyd

New member
I'm not sure if this fits in...but someone actually said to my husband that, "Chrissy's CF isn't like normal CF."
He had a fit! Mainly because this was not the first time my "CF" was made out to be "not a big deal". Not that I want everyone to make it a big deal or anything but a little acknowledgement would be nice. (These people still smoked around me and always made it sound like their cold was the worst thing in the world. So I think that it was said as a your problems not as bad as mine is.)

Oh and when I was working full time I used to get asked, "haven't they cured that yet?" and "how did you catch it?"
 
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chrissyd

New member
I'm not sure if this fits in...but someone actually said to my husband that, "Chrissy's CF isn't like normal CF."
He had a fit! Mainly because this was not the first time my "CF" was made out to be "not a big deal". Not that I want everyone to make it a big deal or anything but a little acknowledgement would be nice. (These people still smoked around me and always made it sound like their cold was the worst thing in the world. So I think that it was said as a your problems not as bad as mine is.)

Oh and when I was working full time I used to get asked, "haven't they cured that yet?" and "how did you catch it?"
 
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chrissyd

New member
I'm not sure if this fits in...but someone actually said to my husband that, "Chrissy's CF isn't like normal CF."
<br />He had a fit! Mainly because this was not the first time my "CF" was made out to be "not a big deal". Not that I want everyone to make it a big deal or anything but a little acknowledgement would be nice. (These people still smoked around me and always made it sound like their cold was the worst thing in the world. So I think that it was said as a your problems not as bad as mine is.)
<br />
<br />Oh and when I was working full time I used to get asked, "haven't they cured that yet?" and "how did you catch it?"
<br />
<br />
 
M

mamaScarlett

Active member
I pretty much think that people generally mean well, or just don't know what to say. I mean heck there's been times in conversation where I've found out that someone's loved one has passed away and I haven't known what to say, or walked away and thought 'i shouldn't have said that'.
The only thing that reallllllllly ticks me off is when people that do know, (or <em>should</em> know better) come near me while they are sick anyway bc they don't really think its a big deal to risk getting me sick. I've actually had people come to my home, tell me when they arrive that they have a cold, but tell me that if I get it to not worry bc its 'not that bad'. I've had sick people come into my home and tell me that I shouldn't have parties if I don't want to get sick! NO, you shouldn't be selfish and come to my house while you're getting over the flu! It minimizes my Cf by hugging/kissing me, or being close to me when you know you are sick-thats crossing a line.
As far being part of a cf community, for me its a tricky balance. I never was part of this cf community until I was an adult. No one tried to stop me, I just never felt the need for it. I have heard docs and nurses caution against too much of it. But to be honest, after being involved in online support now for many years I do see the caution. (i also see the benefits as well) I personally can't have Cf in any way take more time from my day that it already does. (hours of chest pt, vitamins, meds, etc) And for me, its not healthy to be talking daily/hourly about it. I would say to someone else, go based off your own feelings. If you start to walk away from chats feeling frustrated, negative or down/discouraged then its probably time to scale it back. It should be a good thing, not another frustration.
 
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mamaScarlett

Active member
I pretty much think that people generally mean well, or just don't know what to say. I mean heck there's been times in conversation where I've found out that someone's loved one has passed away and I haven't known what to say, or walked away and thought 'i shouldn't have said that'.
The only thing that reallllllllly ticks me off is when people that do know, (or <em>should</em> know better) come near me while they are sick anyway bc they don't really think its a big deal to risk getting me sick. I've actually had people come to my home, tell me when they arrive that they have a cold, but tell me that if I get it to not worry bc its 'not that bad'. I've had sick people come into my home and tell me that I shouldn't have parties if I don't want to get sick! NO, you shouldn't be selfish and come to my house while you're getting over the flu! It minimizes my Cf by hugging/kissing me, or being close to me when you know you are sick-thats crossing a line.
As far being part of a cf community, for me its a tricky balance. I never was part of this cf community until I was an adult. No one tried to stop me, I just never felt the need for it. I have heard docs and nurses caution against too much of it. But to be honest, after being involved in online support now for many years I do see the caution. (i also see the benefits as well) I personally can't have Cf in any way take more time from my day that it already does. (hours of chest pt, vitamins, meds, etc) And for me, its not healthy to be talking daily/hourly about it. I would say to someone else, go based off your own feelings. If you start to walk away from chats feeling frustrated, negative or down/discouraged then its probably time to scale it back. It should be a good thing, not another frustration.
 
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mamaScarlett

Active member
<p>I pretty much think that people generally mean well, or just don't know what to say. I mean heck there's been times in conversation where I've found out that someone's loved one has passed away and I haven't known what to say, or walked away and thought 'i shouldn't have said that'.
<p>The only thing that reallllllllly ticks me off is when people that do know, (or <em>should</em> know better) come near me while they are sick anyway bc they don't really think its a big deal to risk getting me sick. I've actually had people come to my home, tell me when they arrive that they have a cold, but tell me that if I get it to not worry bc its 'not that bad'. I've had sick people come into my home and tell me that I shouldn't have parties if I don't want to get sick! NO, you shouldn't be selfish and come to my house while you're getting over the flu! It minimizes my Cf by hugging/kissing me, or being close to me when you know you are sick-thats crossing a line.
<p>As far being part of a cf community, for me its a tricky balance. I never was part of this cf community until I was an adult. No one tried to stop me, I just never felt the need for it. I have heard docs and nurses caution against too much of it. But to be honest, after being involved in online support now for many years I do see the caution. (i also see the benefits as well) I personally can't have Cf in any way take more time from my day that it already does. (hours of chest pt, vitamins, meds, etc) And for me, its not healthy to be talking daily/hourly about it. I would say to someone else, go based off your own feelings. If you start to walk away from chats feeling frustrated, negative or down/discouraged then its probably time to scale it back. It should be a good thing, not another frustration.
 
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Ratatosk

Administrator
Staff member
I too feel that people mean well or don't know what to say. A number of times my MIL will make comments about DS and I realize that SHE'S trying to reassure herself. And I tend to be not necessarily gloom and doom, but a realist. Things can change at the drop of a hat and I don't want to lull myself into a sense of false security.

As for sickies coming to our house -- drives me NUTS. Especially the "it's just a cold" only to find out it's pneumonia, bronchitis... This winter a relative "just had a sinus/head cold" and was feeling much better but when we stopped by their house to drop something off she had chills, was achy, a cough. A week later she FINALLY felt well enough not to sleep they day away because she apparently had influenza A. Grrr!
 
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Ratatosk

Administrator
Staff member
I too feel that people mean well or don't know what to say. A number of times my MIL will make comments about DS and I realize that SHE'S trying to reassure herself. And I tend to be not necessarily gloom and doom, but a realist. Things can change at the drop of a hat and I don't want to lull myself into a sense of false security.

As for sickies coming to our house -- drives me NUTS. Especially the "it's just a cold" only to find out it's pneumonia, bronchitis... This winter a relative "just had a sinus/head cold" and was feeling much better but when we stopped by their house to drop something off she had chills, was achy, a cough. A week later she FINALLY felt well enough not to sleep they day away because she apparently had influenza A. Grrr!
 
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Ratatosk

Administrator
Staff member
I too feel that people mean well or don't know what to say. A number of times my MIL will make comments about DS and I realize that SHE'S trying to reassure herself. And I tend to be not necessarily gloom and doom, but a realist. Things can change at the drop of a hat and I don't want to lull myself into a sense of false security.
<br />
<br />As for sickies coming to our house -- drives me NUTS. Especially the "it's just a cold" only to find out it's pneumonia, bronchitis... This winter a relative "just had a sinus/head cold" and was feeling much better but when we stopped by their house to drop something off she had chills, was achy, a cough. A week later she FINALLY felt well enough not to sleep they day away because she apparently had influenza A. Grrr!
 
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krisgabes

New member
This post is so interesting! You guys have made me definately laugh over here because I have absolutely heard every one of those things!! I completely feel the same way. As many people on here know because I've posted before in other threads, I have liver cirrhosis related to the CF too as well as an enlarged spleen and lately I was told I needed a transplant. First thing that ticked me off was when my doctor asked me "how do you feel about getting a transplant?" UMMMMMMMMMM what do you think!! Then as a result of the enlarged spleen and liver I'm a bit more "round bellied" so to speak. I have AT LEAST 2 people a week asking me if I'm pregnant, or "how far along" am I. One woman actually stood there and was like, no way, you're kidding right? Some people just need to mind their own business! lol


I've also gotten the "god bless you" and the "I just got over the same thing a week ago/I have bad allergies too" comment. lol I do the same, I just say thank you and move on too.
 
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krisgabes

New member
This post is so interesting! You guys have made me definately laugh over here because I have absolutely heard every one of those things!! I completely feel the same way. As many people on here know because I've posted before in other threads, I have liver cirrhosis related to the CF too as well as an enlarged spleen and lately I was told I needed a transplant. First thing that ticked me off was when my doctor asked me "how do you feel about getting a transplant?" UMMMMMMMMMM what do you think!! Then as a result of the enlarged spleen and liver I'm a bit more "round bellied" so to speak. I have AT LEAST 2 people a week asking me if I'm pregnant, or "how far along" am I. One woman actually stood there and was like, no way, you're kidding right? Some people just need to mind their own business! lol


I've also gotten the "god bless you" and the "I just got over the same thing a week ago/I have bad allergies too" comment. lol I do the same, I just say thank you and move on too.
 
K

krisgabes

New member
This post is so interesting! You guys have made me definately laugh over here because I have absolutely heard every one of those things!! I completely feel the same way. As many people on here know because I've posted before in other threads, I have liver cirrhosis related to the CF too as well as an enlarged spleen and lately I was told I needed a transplant. First thing that ticked me off was when my doctor asked me "how do you feel about getting a transplant?" UMMMMMMMMMM what do you think!! Then as a result of the enlarged spleen and liver I'm a bit more "round bellied" so to speak. I have AT LEAST 2 people a week asking me if I'm pregnant, or "how far along" am I. One woman actually stood there and was like, no way, you're kidding right? Some people just need to mind their own business! lol
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<br />I've also gotten the "god bless you" and the "I just got over the same thing a week ago/I have bad allergies too" comment. lol I do the same, I just say thank you and move on too.
 
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krisgabes

New member
Oh! And some people assuming that my CF isn't as bad as others because I'm "not like those other sick kids who need to be in the hospital all the time".
 
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