Why are some people so ignorant ????

[tammykrumrey]

I agree that it is so much more frustrating when it comes from your family or friends. I, too, love to educate people about CF and hope that I can leave a good enough impression that the next time they see a fund raiser for CF, they think about our conversation. So strangers, well, they just normally don't understand much about CF.

But with those who do know, it can be aggravating. Recently I was telling one of my friends (who has a son with Asthma, and although I know it is a challenging condition itself, it seems she is always comparing it to CF) about our little friend Kaylee who is 10 with CF, and has been given only a few more months to live. Her comment was see how lucky you are. Your kids aren't very sick at all and have such mild CF. To which I agreed to, at first.

But then later on after I hung up the phone, I became frustrated. I don't feel lucky. We have to work hard to keep them healthy. It doesn't just happen. And when they are crying about tummy aches that I can't make go away, or when we are fighting over taking enzymes or whatever...I don't feel lucky. Having to stop what we are doing to do the Vest doesn't make me feel lucky. They are just progressing slower than our little friend Kaylee.

Yes, people can be ignorant to what we go through to keep our kids 'looking' healthy.

 

[tammykrumrey]

I agree that it is so much more frustrating when it comes from your family or friends. I, too, love to educate people about CF and hope that I can leave a good enough impression that the next time they see a fund raiser for CF, they think about our conversation. So strangers, well, they just normally don't understand much about CF.

But with those who do know, it can be aggravating. Recently I was telling one of my friends (who has a son with Asthma, and although I know it is a challenging condition itself, it seems she is always comparing it to CF) about our little friend Kaylee who is 10 with CF, and has been given only a few more months to live. Her comment was see how lucky you are. Your kids aren't very sick at all and have such mild CF. To which I agreed to, at first.

But then later on after I hung up the phone, I became frustrated. I don't feel lucky. We have to work hard to keep them healthy. It doesn't just happen. And when they are crying about tummy aches that I can't make go away, or when we are fighting over taking enzymes or whatever...I don't feel lucky. Having to stop what we are doing to do the Vest doesn't make me feel lucky. They are just progressing slower than our little friend Kaylee.

Yes, people can be ignorant to what we go through to keep our kids 'looking' healthy.

 

[tammykrumrey]

I agree that it is so much more frustrating when it comes from your family or friends. I, too, love to educate people about CF and hope that I can leave a good enough impression that the next time they see a fund raiser for CF, they think about our conversation. So strangers, well, they just normally don't understand much about CF.

But with those who do know, it can be aggravating. Recently I was telling one of my friends (who has a son with Asthma, and although I know it is a challenging condition itself, it seems she is always comparing it to CF) about our little friend Kaylee who is 10 with CF, and has been given only a few more months to live. Her comment was see how lucky you are. Your kids aren't very sick at all and have such mild CF. To which I agreed to, at first.

But then later on after I hung up the phone, I became frustrated. I don't feel lucky. We have to work hard to keep them healthy. It doesn't just happen. And when they are crying about tummy aches that I can't make go away, or when we are fighting over taking enzymes or whatever...I don't feel lucky. Having to stop what we are doing to do the Vest doesn't make me feel lucky. They are just progressing slower than our little friend Kaylee.

Yes, people can be ignorant to what we go through to keep our kids 'looking' healthy.

 

[tammykrumrey]

I agree that it is so much more frustrating when it comes from your family or friends. I, too, love to educate people about CF and hope that I can leave a good enough impression that the next time they see a fund raiser for CF, they think about our conversation. So strangers, well, they just normally don't understand much about CF.

But with those who do know, it can be aggravating. Recently I was telling one of my friends (who has a son with Asthma, and although I know it is a challenging condition itself, it seems she is always comparing it to CF) about our little friend Kaylee who is 10 with CF, and has been given only a few more months to live. Her comment was see how lucky you are. Your kids aren't very sick at all and have such mild CF. To which I agreed to, at first.

But then later on after I hung up the phone, I became frustrated. I don't feel lucky. We have to work hard to keep them healthy. It doesn't just happen. And when they are crying about tummy aches that I can't make go away, or when we are fighting over taking enzymes or whatever...I don't feel lucky. Having to stop what we are doing to do the Vest doesn't make me feel lucky. They are just progressing slower than our little friend Kaylee.

Yes, people can be ignorant to what we go through to keep our kids 'looking' healthy.

 

[sweetwhite30]

I had this lady at happy harrys tell me he just looks so healthy for someone having cf. and i said well it takes alot to keep him as plump and cute and smiling as he is... She then said i know he has cf but he just does not look like it..I then told her well i am glad and thank you because it means alot to me that the world will see him in this good healthy state we strive hard at doing.... people are just so darn stupid or have a misperception of what cf. is or how it looks....

 

[sweetwhite30]

I had this lady at happy harrys tell me he just looks so healthy for someone having cf. and i said well it takes alot to keep him as plump and cute and smiling as he is... She then said i know he has cf but he just does not look like it..I then told her well i am glad and thank you because it means alot to me that the world will see him in this good healthy state we strive hard at doing.... people are just so darn stupid or have a misperception of what cf. is or how it looks....

 

[sweetwhite30]

I had this lady at happy harrys tell me he just looks so healthy for someone having cf. and i said well it takes alot to keep him as plump and cute and smiling as he is... She then said i know he has cf but he just does not look like it..I then told her well i am glad and thank you because it means alot to me that the world will see him in this good healthy state we strive hard at doing.... people are just so darn stupid or have a misperception of what cf. is or how it looks....

 

[sweetwhite30]

I had this lady at happy harrys tell me he just looks so healthy for someone having cf. and i said well it takes alot to keep him as plump and cute and smiling as he is... She then said i know he has cf but he just does not look like it..I then told her well i am glad and thank you because it means alot to me that the world will see him in this good healthy state we strive hard at doing.... people are just so darn stupid or have a misperception of what cf. is or how it looks....

 

[sweetwhite30]

I had this lady at happy harrys tell me he just looks so healthy for someone having cf. and i said well it takes alot to keep him as plump and cute and smiling as he is... She then said i know he has cf but he just does not look like it..I then told her well i am glad and thank you because it means alot to me that the world will see him in this good healthy state we strive hard at doing.... people are just so darn stupid or have a misperception of what cf. is or how it looks....

 

[sweetwhite30]

I had this lady at happy harrys tell me he just looks so healthy for someone having cf. and i said well it takes alot to keep him as plump and cute and smiling as he is... She then said i know he has cf but he just does not look like it..I then told her well i am glad and thank you because it means alot to me that the world will see him in this good healthy state we strive hard at doing.... people are just so darn stupid or have a misperception of what cf. is or how it looks....

 

[usedtobeinca]

My favorites:

When describing the MI/repture/ostomy bag/skin breakdown/re-connect surgery drama of Thomas' first few months, I'm almost cut off mid-sentenct with "well it's all behind him now." Yeah, the surgery is, but the danger of MIE is always there, and it's never over with cf - it doesn't go away and is never "all behind him now." Argh!

When explaining to my former boss that we we're moving from our former small town home after Thomas was born to Portland (Ore) where Oregon's only two CF care center are to be closer to his care, the response being - "but isn't it true that he won't be needing to see the cf docs very much after this (being the drama of the gripe described above)." Rrrrr.

Oh, and "don't focus on the negative, you can't let yourself think that way..." when describing innermost fears to family members regarding CF in general and while we were going through Thomas' MI issues during last year's 8 week hospital stay. Nice support.

I know, shouldn't be too big a deal, and it isn't every day, but it's always there. Like Sakasuka said, it's our job to educate them. So very true, there is no better way to handle it.

OK, enough griping - got it off my chest.

 

[usedtobeinca]

My favorites:

When describing the MI/repture/ostomy bag/skin breakdown/re-connect surgery drama of Thomas' first few months, I'm almost cut off mid-sentenct with "well it's all behind him now." Yeah, the surgery is, but the danger of MIE is always there, and it's never over with cf - it doesn't go away and is never "all behind him now." Argh!

When explaining to my former boss that we we're moving from our former small town home after Thomas was born to Portland (Ore) where Oregon's only two CF care center are to be closer to his care, the response being - "but isn't it true that he won't be needing to see the cf docs very much after this (being the drama of the gripe described above)." Rrrrr.

Oh, and "don't focus on the negative, you can't let yourself think that way..." when describing innermost fears to family members regarding CF in general and while we were going through Thomas' MI issues during last year's 8 week hospital stay. Nice support.

I know, shouldn't be too big a deal, and it isn't every day, but it's always there. Like Sakasuka said, it's our job to educate them. So very true, there is no better way to handle it.

OK, enough griping - got it off my chest.

 

[usedtobeinca]

My favorites:

When describing the MI/repture/ostomy bag/skin breakdown/re-connect surgery drama of Thomas' first few months, I'm almost cut off mid-sentenct with "well it's all behind him now." Yeah, the surgery is, but the danger of MIE is always there, and it's never over with cf - it doesn't go away and is never "all behind him now." Argh!

When explaining to my former boss that we we're moving from our former small town home after Thomas was born to Portland (Ore) where Oregon's only two CF care center are to be closer to his care, the response being - "but isn't it true that he won't be needing to see the cf docs very much after this (being the drama of the gripe described above)." Rrrrr.

Oh, and "don't focus on the negative, you can't let yourself think that way..." when describing innermost fears to family members regarding CF in general and while we were going through Thomas' MI issues during last year's 8 week hospital stay. Nice support.

I know, shouldn't be too big a deal, and it isn't every day, but it's always there. Like Sakasuka said, it's our job to educate them. So very true, there is no better way to handle it.

OK, enough griping - got it off my chest.

 

[usedtobeinca]

My favorites:

When describing the MI/repture/ostomy bag/skin breakdown/re-connect surgery drama of Thomas' first few months, I'm almost cut off mid-sentenct with "well it's all behind him now." Yeah, the surgery is, but the danger of MIE is always there, and it's never over with cf - it doesn't go away and is never "all behind him now." Argh!

When explaining to my former boss that we we're moving from our former small town home after Thomas was born to Portland (Ore) where Oregon's only two CF care center are to be closer to his care, the response being - "but isn't it true that he won't be needing to see the cf docs very much after this (being the drama of the gripe described above)." Rrrrr.

Oh, and "don't focus on the negative, you can't let yourself think that way..." when describing innermost fears to family members regarding CF in general and while we were going through Thomas' MI issues during last year's 8 week hospital stay. Nice support.

I know, shouldn't be too big a deal, and it isn't every day, but it's always there. Like Sakasuka said, it's our job to educate them. So very true, there is no better way to handle it.

OK, enough griping - got it off my chest.

 

[usedtobeinca]

My favorites:

When describing the MI/repture/ostomy bag/skin breakdown/re-connect surgery drama of Thomas' first few months, I'm almost cut off mid-sentenct with "well it's all behind him now." Yeah, the surgery is, but the danger of MIE is always there, and it's never over with cf - it doesn't go away and is never "all behind him now." Argh!

When explaining to my former boss that we we're moving from our former small town home after Thomas was born to Portland (Ore) where Oregon's only two CF care center are to be closer to his care, the response being - "but isn't it true that he won't be needing to see the cf docs very much after this (being the drama of the gripe described above)." Rrrrr.

Oh, and "don't focus on the negative, you can't let yourself think that way..." when describing innermost fears to family members regarding CF in general and while we were going through Thomas' MI issues during last year's 8 week hospital stay. Nice support.

I know, shouldn't be too big a deal, and it isn't every day, but it's always there. Like Sakasuka said, it's our job to educate them. So very true, there is no better way to handle it.

OK, enough griping - got it off my chest.

 

[usedtobeinca]

My favorites:

When describing the MI/repture/ostomy bag/skin breakdown/re-connect surgery drama of Thomas' first few months, I'm almost cut off mid-sentenct with "well it's all behind him now." Yeah, the surgery is, but the danger of MIE is always there, and it's never over with cf - it doesn't go away and is never "all behind him now." Argh!

When explaining to my former boss that we we're moving from our former small town home after Thomas was born to Portland (Ore) where Oregon's only two CF care center are to be closer to his care, the response being - "but isn't it true that he won't be needing to see the cf docs very much after this (being the drama of the gripe described above)." Rrrrr.

Oh, and "don't focus on the negative, you can't let yourself think that way..." when describing innermost fears to family members regarding CF in general and while we were going through Thomas' MI issues during last year's 8 week hospital stay. Nice support.

I know, shouldn't be too big a deal, and it isn't every day, but it's always there. Like Sakasuka said, it's our job to educate them. So very true, there is no better way to handle it.

OK, enough griping - got it off my chest.

 

[usedtobeinca]

Oh, one more (this post is new to me so I'm letting it all hang out):

From family and friends (who should know better), other parents and strangers - mentioning here and there "...oh sounds like he's got a little cough. Oh you should have a doctor check that out..." Yeah, turns out we've thought of that, though it gets repeated even after explaining that he has CF.

Interestingly the most understanding have been other kiddos Thomas knows and plays with. They've seen his treatments (and even bag changes last summer) and were nothing but intrigued. No wierdness. It's the adults who seem unable to understand.

Guess this bugs me more than I originally thought. Our clinic social worker had some good ideas for educating people - I look forward to the opportunity to give them a try.

 

[usedtobeinca]

Oh, one more (this post is new to me so I'm letting it all hang out):

From family and friends (who should know better), other parents and strangers - mentioning here and there "...oh sounds like he's got a little cough. Oh you should have a doctor check that out..." Yeah, turns out we've thought of that, though it gets repeated even after explaining that he has CF.

Interestingly the most understanding have been other kiddos Thomas knows and plays with. They've seen his treatments (and even bag changes last summer) and were nothing but intrigued. No wierdness. It's the adults who seem unable to understand.

Guess this bugs me more than I originally thought. Our clinic social worker had some good ideas for educating people - I look forward to the opportunity to give them a try.

 

[usedtobeinca]

Oh, one more (this post is new to me so I'm letting it all hang out):

From family and friends (who should know better), other parents and strangers - mentioning here and there "...oh sounds like he's got a little cough. Oh you should have a doctor check that out..." Yeah, turns out we've thought of that, though it gets repeated even after explaining that he has CF.

Interestingly the most understanding have been other kiddos Thomas knows and plays with. They've seen his treatments (and even bag changes last summer) and were nothing but intrigued. No wierdness. It's the adults who seem unable to understand.

Guess this bugs me more than I originally thought. Our clinic social worker had some good ideas for educating people - I look forward to the opportunity to give them a try.

 

[usedtobeinca]

Oh, one more (this post is new to me so I'm letting it all hang out):

From family and friends (who should know better), other parents and strangers - mentioning here and there "...oh sounds like he's got a little cough. Oh you should have a doctor check that out..." Yeah, turns out we've thought of that, though it gets repeated even after explaining that he has CF.

Interestingly the most understanding have been other kiddos Thomas knows and plays with. They've seen his treatments (and even bag changes last summer) and were nothing but intrigued. No wierdness. It's the adults who seem unable to understand.

Guess this bugs me more than I originally thought. Our clinic social worker had some good ideas for educating people - I look forward to the opportunity to give them a try.