Why are some people so ignorant ????

[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.

 

[Ratatosk]

DH got the "he'll get better/outgrow this" comment yesterday about DS. And then he had to explain that it was a progressive disease...

 

[Ratatosk]

DH got the "he'll get better/outgrow this" comment yesterday about DS. And then he had to explain that it was a progressive disease...

 

[Ratatosk]

DH got the "he'll get better/outgrow this" comment yesterday about DS. And then he had to explain that it was a progressive disease...

 

[Ratatosk]

DH got the "he'll get better/outgrow this" comment yesterday about DS. And then he had to explain that it was a progressive disease...

 

[Ratatosk]

DH got the "he'll get better/outgrow this" comment yesterday about DS. And then he had to explain that it was a progressive disease...

 

[Ratatosk]

DH got the "he'll get better/outgrow this" comment yesterday about DS. And then he had to explain that it was a progressive disease...

 

[JORDYSMOM]

I am all for educating people about CF. I try every chance I get to do just that. (still trying to educate myself though lol) BUT-some people just can't be educated! My BIL for example. He has been told over and over about CF and he just doesn't seem to listen.

The other night he was going on and on about how my hubby should be following his dream of singing because he is so talented etc. My hubby is more than talented he has a great gift! He has simply made the very unselfish choice of being a full time husb and dad. I told my BIL that because of Jordan's health issues, the singing career had to be put on hold. He then said, "well I understand, but he's out of the hosp and all that has changed right?" I said "No he still has CF and there's still no cure!"

I feel better now-I guess I've been carrying that around with me for the past few days! Thanks for the post.

Stacey

 

[JORDYSMOM]

I am all for educating people about CF. I try every chance I get to do just that. (still trying to educate myself though lol) BUT-some people just can't be educated! My BIL for example. He has been told over and over about CF and he just doesn't seem to listen.

The other night he was going on and on about how my hubby should be following his dream of singing because he is so talented etc. My hubby is more than talented he has a great gift! He has simply made the very unselfish choice of being a full time husb and dad. I told my BIL that because of Jordan's health issues, the singing career had to be put on hold. He then said, "well I understand, but he's out of the hosp and all that has changed right?" I said "No he still has CF and there's still no cure!"

I feel better now-I guess I've been carrying that around with me for the past few days! Thanks for the post.

Stacey

 

[JORDYSMOM]

I am all for educating people about CF. I try every chance I get to do just that. (still trying to educate myself though lol) BUT-some people just can't be educated! My BIL for example. He has been told over and over about CF and he just doesn't seem to listen.

The other night he was going on and on about how my hubby should be following his dream of singing because he is so talented etc. My hubby is more than talented he has a great gift! He has simply made the very unselfish choice of being a full time husb and dad. I told my BIL that because of Jordan's health issues, the singing career had to be put on hold. He then said, "well I understand, but he's out of the hosp and all that has changed right?" I said "No he still has CF and there's still no cure!"

I feel better now-I guess I've been carrying that around with me for the past few days! Thanks for the post.

Stacey

 

[JORDYSMOM]

I am all for educating people about CF. I try every chance I get to do just that. (still trying to educate myself though lol) BUT-some people just can't be educated! My BIL for example. He has been told over and over about CF and he just doesn't seem to listen.

The other night he was going on and on about how my hubby should be following his dream of singing because he is so talented etc. My hubby is more than talented he has a great gift! He has simply made the very unselfish choice of being a full time husb and dad. I told my BIL that because of Jordan's health issues, the singing career had to be put on hold. He then said, "well I understand, but he's out of the hosp and all that has changed right?" I said "No he still has CF and there's still no cure!"

I feel better now-I guess I've been carrying that around with me for the past few days! Thanks for the post.

Stacey

 

[JORDYSMOM]

I am all for educating people about CF. I try every chance I get to do just that. (still trying to educate myself though lol) BUT-some people just can't be educated! My BIL for example. He has been told over and over about CF and he just doesn't seem to listen.

The other night he was going on and on about how my hubby should be following his dream of singing because he is so talented etc. My hubby is more than talented he has a great gift! He has simply made the very unselfish choice of being a full time husb and dad. I told my BIL that because of Jordan's health issues, the singing career had to be put on hold. He then said, "well I understand, but he's out of the hosp and all that has changed right?" I said "No he still has CF and there's still no cure!"

I feel better now-I guess I've been carrying that around with me for the past few days! Thanks for the post.

Stacey

 

[JORDYSMOM]

I am all for educating people about CF. I try every chance I get to do just that. (still trying to educate myself though lol) BUT-some people just can't be educated! My BIL for example. He has been told over and over about CF and he just doesn't seem to listen.

The other night he was going on and on about how my hubby should be following his dream of singing because he is so talented etc. My hubby is more than talented he has a great gift! He has simply made the very unselfish choice of being a full time husb and dad. I told my BIL that because of Jordan's health issues, the singing career had to be put on hold. He then said, "well I understand, but he's out of the hosp and all that has changed right?" I said "No he still has CF and there's still no cure!"

I feel better now-I guess I've been carrying that around with me for the past few days! Thanks for the post.

Stacey

 

[cysticfibrosisgirl]

I have CF and my CF had affected my lungs and digestive system the same. What I get mad about is that people that live on our sreet say to my mom, She has CF? Well would it help to take out the carpet in her room? So I sent the women an e-mail telling her what CF is and she's like are you sure thats right? I am like yes I live with it!?

What also made me mad it that I was in one of the hospitals in our town and I was there to get IV meds for a tune-up. and the ER doc had oudered this. So I got put on the 6th floor of the hospital and then I see 2 new docs and they say to me take off your oxygen! You don't seem to need it. And he goes on and on about how my chest x-ray was not showing an infection! and then he wanted to know how I was Dx!

Then I said to him I am here to make sure my cough does not turn into an infection I did not say I am her for an infection!!!! I was so mad! I started to cry.
With CF you want to try and keep infections alway!

Well my case of CF was dx thru a stool test. and PFT's my doctors are hoping someday they can find my genes. But for now we have to work with what is here.
So thats how things have gone with me...

 

[cysticfibrosisgirl]

I have CF and my CF had affected my lungs and digestive system the same. What I get mad about is that people that live on our sreet say to my mom, She has CF? Well would it help to take out the carpet in her room? So I sent the women an e-mail telling her what CF is and she's like are you sure thats right? I am like yes I live with it!?

What also made me mad it that I was in one of the hospitals in our town and I was there to get IV meds for a tune-up. and the ER doc had oudered this. So I got put on the 6th floor of the hospital and then I see 2 new docs and they say to me take off your oxygen! You don't seem to need it. And he goes on and on about how my chest x-ray was not showing an infection! and then he wanted to know how I was Dx!

Then I said to him I am here to make sure my cough does not turn into an infection I did not say I am her for an infection!!!! I was so mad! I started to cry.
With CF you want to try and keep infections alway!

Well my case of CF was dx thru a stool test. and PFT's my doctors are hoping someday they can find my genes. But for now we have to work with what is here.
So thats how things have gone with me...

 

[cysticfibrosisgirl]

I have CF and my CF had affected my lungs and digestive system the same. What I get mad about is that people that live on our sreet say to my mom, She has CF? Well would it help to take out the carpet in her room? So I sent the women an e-mail telling her what CF is and she's like are you sure thats right? I am like yes I live with it!?

What also made me mad it that I was in one of the hospitals in our town and I was there to get IV meds for a tune-up. and the ER doc had oudered this. So I got put on the 6th floor of the hospital and then I see 2 new docs and they say to me take off your oxygen! You don't seem to need it. And he goes on and on about how my chest x-ray was not showing an infection! and then he wanted to know how I was Dx!

Then I said to him I am here to make sure my cough does not turn into an infection I did not say I am her for an infection!!!! I was so mad! I started to cry.
With CF you want to try and keep infections alway!

Well my case of CF was dx thru a stool test. and PFT's my doctors are hoping someday they can find my genes. But for now we have to work with what is here.
So thats how things have gone with me...

 

[cysticfibrosisgirl]

I have CF and my CF had affected my lungs and digestive system the same. What I get mad about is that people that live on our sreet say to my mom, She has CF? Well would it help to take out the carpet in her room? So I sent the women an e-mail telling her what CF is and she's like are you sure thats right? I am like yes I live with it!?

What also made me mad it that I was in one of the hospitals in our town and I was there to get IV meds for a tune-up. and the ER doc had oudered this. So I got put on the 6th floor of the hospital and then I see 2 new docs and they say to me take off your oxygen! You don't seem to need it. And he goes on and on about how my chest x-ray was not showing an infection! and then he wanted to know how I was Dx!

Then I said to him I am here to make sure my cough does not turn into an infection I did not say I am her for an infection!!!! I was so mad! I started to cry.
With CF you want to try and keep infections alway!

Well my case of CF was dx thru a stool test. and PFT's my doctors are hoping someday they can find my genes. But for now we have to work with what is here.
So thats how things have gone with me...

 

[cysticfibrosisgirl]

I have CF and my CF had affected my lungs and digestive system the same. What I get mad about is that people that live on our sreet say to my mom, She has CF? Well would it help to take out the carpet in her room? So I sent the women an e-mail telling her what CF is and she's like are you sure thats right? I am like yes I live with it!?

What also made me mad it that I was in one of the hospitals in our town and I was there to get IV meds for a tune-up. and the ER doc had oudered this. So I got put on the 6th floor of the hospital and then I see 2 new docs and they say to me take off your oxygen! You don't seem to need it. And he goes on and on about how my chest x-ray was not showing an infection! and then he wanted to know how I was Dx!

Then I said to him I am here to make sure my cough does not turn into an infection I did not say I am her for an infection!!!! I was so mad! I started to cry.
With CF you want to try and keep infections alway!

Well my case of CF was dx thru a stool test. and PFT's my doctors are hoping someday they can find my genes. But for now we have to work with what is here.
So thats how things have gone with me...

 

[cysticfibrosisgirl]

I have CF and my CF had affected my lungs and digestive system the same. What I get mad about is that people that live on our sreet say to my mom, She has CF? Well would it help to take out the carpet in her room? So I sent the women an e-mail telling her what CF is and she's like are you sure thats right? I am like yes I live with it!?

What also made me mad it that I was in one of the hospitals in our town and I was there to get IV meds for a tune-up. and the ER doc had oudered this. So I got put on the 6th floor of the hospital and then I see 2 new docs and they say to me take off your oxygen! You don't seem to need it. And he goes on and on about how my chest x-ray was not showing an infection! and then he wanted to know how I was Dx!

Then I said to him I am here to make sure my cough does not turn into an infection I did not say I am her for an infection!!!! I was so mad! I started to cry.
With CF you want to try and keep infections alway!

Well my case of CF was dx thru a stool test. and PFT's my doctors are hoping someday they can find my genes. But for now we have to work with what is here.
So thats how things have gone with me...