behavior problems with cf kids

[cysticfibrosisgirl]

I am a 19 year old with CF. This is what I think:

Cystic Fibrosis is a very sad diease and having it is allot to work with. I have all I can do to get anything done in a day but treatmnts. Some of us with CF can not do much at all. I con't go out allot becuase I get short of breath when I walk. So going shoping becomes very hard. I con't go to school becuase I keeped getting sick and never could keep up with the work. I also was very sleepy all the time at school. So you moms out there who do not have CF think about how different it was for you to be able to have a normal life and go to school with out becoming overly sleepy. Think about how nice it was to not have think about the word (hospital). It's hard for teens to act good when they have CF becuase there is soo much sad stuff about the illness that makes us CFers so sad and even puts off our madness. Try talking with your teen about how it feels to be sick with CF. Give them a hug becuase you won't have that hug forever! Use that hug now becuase it will not be there much longer.

19w CF D F508's

 

[cysticfibrosisgirl]

I am a 19 year old with CF. This is what I think:

Cystic Fibrosis is a very sad diease and having it is allot to work with. I have all I can do to get anything done in a day but treatmnts. Some of us with CF can not do much at all. I con't go out allot becuase I get short of breath when I walk. So going shoping becomes very hard. I con't go to school becuase I keeped getting sick and never could keep up with the work. I also was very sleepy all the time at school. So you moms out there who do not have CF think about how different it was for you to be able to have a normal life and go to school with out becoming overly sleepy. Think about how nice it was to not have think about the word (hospital). It's hard for teens to act good when they have CF becuase there is soo much sad stuff about the illness that makes us CFers so sad and even puts off our madness. Try talking with your teen about how it feels to be sick with CF. Give them a hug becuase you won't have that hug forever! Use that hug now becuase it will not be there much longer.

19w CF D F508's

 

[cysticfibrosisgirl]

I am a 19 year old with CF. This is what I think:

Cystic Fibrosis is a very sad diease and having it is allot to work with. I have all I can do to get anything done in a day but treatmnts. Some of us with CF can not do much at all. I con't go out allot becuase I get short of breath when I walk. So going shoping becomes very hard. I con't go to school becuase I keeped getting sick and never could keep up with the work. I also was very sleepy all the time at school. So you moms out there who do not have CF think about how different it was for you to be able to have a normal life and go to school with out becoming overly sleepy. Think about how nice it was to not have think about the word (hospital). It's hard for teens to act good when they have CF becuase there is soo much sad stuff about the illness that makes us CFers so sad and even puts off our madness. Try talking with your teen about how it feels to be sick with CF. Give them a hug becuase you won't have that hug forever! Use that hug now becuase it will not be there much longer.

19w CF D F508's

 

[Emily65Roses]

I suppose we can all hold out hope for heroes to let trains run over them... for the most part, though, it's about as useful as holding out hope that wings will sprout from my butt and I'll fly to the moon on fart power.

My farts <i>are</i> pretty powerful though... *ponders*

 

[Emily65Roses]

I suppose we can all hold out hope for heroes to let trains run over them... for the most part, though, it's about as useful as holding out hope that wings will sprout from my butt and I'll fly to the moon on fart power.

My farts <i>are</i> pretty powerful though... *ponders*

 

[Emily65Roses]

I suppose we can all hold out hope for heroes to let trains run over them... for the most part, though, it's about as useful as holding out hope that wings will sprout from my butt and I'll fly to the moon on fart power.

My farts <i>are</i> pretty powerful though... *ponders*

 

[2perfectboys]

If u truly live w/o hope then I could see why someone would not want to do treatments. I have hope for a lot of things, not just CF I have hope for our society in general even though it's a really screwed up world today. I have hope that I will live a long time and see my little ones having children of their own. I could get run over by a semi tommorrow or tommorrow could be the day I finally win the lottery, that's what makes life, most things are possible in life. I hope my butt never grows wings, it would break the poor wings.

 

[2perfectboys]

If u truly live w/o hope then I could see why someone would not want to do treatments. I have hope for a lot of things, not just CF I have hope for our society in general even though it's a really screwed up world today. I have hope that I will live a long time and see my little ones having children of their own. I could get run over by a semi tommorrow or tommorrow could be the day I finally win the lottery, that's what makes life, most things are possible in life. I hope my butt never grows wings, it would break the poor wings.

 

[2perfectboys]

If u truly live w/o hope then I could see why someone would not want to do treatments. I have hope for a lot of things, not just CF I have hope for our society in general even though it's a really screwed up world today. I have hope that I will live a long time and see my little ones having children of their own. I could get run over by a semi tommorrow or tommorrow could be the day I finally win the lottery, that's what makes life, most things are possible in life. I hope my butt never grows wings, it would break the poor wings.

 

[Emily65Roses]

lol I was hoping you'd take it lightly. I knew it sounded kinda snarky and rude, but I really just thought it was too funny not to say. I couldn't help myself. <img src="i/expressions/devil.gif" border="0">

 

[Emily65Roses]

lol I was hoping you'd take it lightly. I knew it sounded kinda snarky and rude, but I really just thought it was too funny not to say. I couldn't help myself. <img src="i/expressions/devil.gif" border="0">

 

[Emily65Roses]

lol I was hoping you'd take it lightly. I knew it sounded kinda snarky and rude, but I really just thought it was too funny not to say. I couldn't help myself. <img src="i/expressions/devil.gif" border="0">

 

[2perfectboys]

yeah, i'm just imaging wings on two butt cheeks and this massive gas streak through the air

 

[2perfectboys]

yeah, i'm just imaging wings on two butt cheeks and this massive gas streak through the air

 

[2perfectboys]

yeah, i'm just imaging wings on two butt cheeks and this massive gas streak through the air

 

[EmilysMom]

If my butt sprouted wings right now, you'd all be in trouble........they could take over the world!
2Perfect boys....remember when I first heard the train analogy, it was 22 years ago, (Emily just turned 23 over the weekend!) long before Pulmozyme and nearly 90% of the drugs that are on the market now for CF. I just thought it was always a really good analogy for people that don't understand what CF is and think.....your kid is sick.....Poo-Poo!! People think CF can go away or get better and the train analogy gave them the idea that it wouldn't. Our family unfortunately were very good at believing (for a long time) that Emily would "grow out" of CF, so it was nice to be able to impact them with the train analogy. It gave them a way to understand.

 

[EmilysMom]

If my butt sprouted wings right now, you'd all be in trouble........they could take over the world!
2Perfect boys....remember when I first heard the train analogy, it was 22 years ago, (Emily just turned 23 over the weekend!) long before Pulmozyme and nearly 90% of the drugs that are on the market now for CF. I just thought it was always a really good analogy for people that don't understand what CF is and think.....your kid is sick.....Poo-Poo!! People think CF can go away or get better and the train analogy gave them the idea that it wouldn't. Our family unfortunately were very good at believing (for a long time) that Emily would "grow out" of CF, so it was nice to be able to impact them with the train analogy. It gave them a way to understand.

 

[EmilysMom]

If my butt sprouted wings right now, you'd all be in trouble........they could take over the world!
2Perfect boys....remember when I first heard the train analogy, it was 22 years ago, (Emily just turned 23 over the weekend!) long before Pulmozyme and nearly 90% of the drugs that are on the market now for CF. I just thought it was always a really good analogy for people that don't understand what CF is and think.....your kid is sick.....Poo-Poo!! People think CF can go away or get better and the train analogy gave them the idea that it wouldn't. Our family unfortunately were very good at believing (for a long time) that Emily would "grow out" of CF, so it was nice to be able to impact them with the train analogy. It gave them a way to understand.

 

[2perfectboys]

Hey Barbara,
Oh I do agree with the train analogy, but I think that train is not traveling as fast as it use to. Maybe i am just too positive, and have not really been trough enough of the bad CF experiences, but I will always hope, as i'm sure u have as a proud mother to a wonderful daughter, Emily. I don't think that cure will ever come, but I do think they will make CF controlable one day, like diabeties, wheter it is in 5 years, 10 years, or 50 years, the technology will continue to improve. In the 8 years, since my son was diagnoised, there has not really been any major medical advancements, but when I was talking to the lady about getting my son into the Denfuusol trial, she was talking so positively about the drug, and made the comment, wouldn't it have been nice to have this drug when he was born, but it wasn't, but if it is seen as benifical and gets FDA approval, there will be infants that can benefit from it from the begining helping better outcomes later.

Lori

 

[2perfectboys]

Hey Barbara,
Oh I do agree with the train analogy, but I think that train is not traveling as fast as it use to. Maybe i am just too positive, and have not really been trough enough of the bad CF experiences, but I will always hope, as i'm sure u have as a proud mother to a wonderful daughter, Emily. I don't think that cure will ever come, but I do think they will make CF controlable one day, like diabeties, wheter it is in 5 years, 10 years, or 50 years, the technology will continue to improve. In the 8 years, since my son was diagnoised, there has not really been any major medical advancements, but when I was talking to the lady about getting my son into the Denfuusol trial, she was talking so positively about the drug, and made the comment, wouldn't it have been nice to have this drug when he was born, but it wasn't, but if it is seen as benifical and gets FDA approval, there will be infants that can benefit from it from the begining helping better outcomes later.

Lori