Borderline CF, i need someone relate to with CF

[monkeysrock724]

<img src="">

I have borderline CF and i am a teenager and was just diagnosed in September of 06'. So far my life hasn't changed much physically, but emotionally it has hit hard. doing treatments like my nebulizer every night and my accapella 100 breaths a day. I know this is nothing compared to full blown people with cystic fibrosis, but i still am affected every day. When i was told that most men with CF were infertile, i felt as if my life did a complete 180 and i broke out crying. All i want in like are healthy children and when i was told that it was likely i was infertile, i was in complete shock. It's hard to cope with maybe being infertile when you really look foward to having children later in life.

Another major issue is explaining CF to my friends. The hardest thing about telling them about my CF is how they don't understand the severity of Cystic Fibrosis and the everyday life style change that comes along with CF. I feel as if they think im weird all of a sudden because i have this disease that they haven't heard of and truthfully, i hadn't heard of it until my doctor told me i had it. Sometimes i am ridiculed for my disease and it is made into a joke, and that hurts more than anything in the world.

There are some good things about CF and that is i have a deep deep appreciation for life and realize how precious every moment of life is. It's hard to have a constant positive attitude towards the disease because sometimes all you want to do is get into bed and cry and get all your feelings out, rather than hiding them within you.

i have never met someone else with CF and when no one can relate to you, it is weird. I try to tell my parents that they don't understand, and no matter what, they never will. You can't "understand" until you live with this horrible disease. it causes fights in the family and unwanted attention from other people.

i just need someone to relate to

thanks

 

[monkeysrock724]

<img src="">

I have borderline CF and i am a teenager and was just diagnosed in September of 06'. So far my life hasn't changed much physically, but emotionally it has hit hard. doing treatments like my nebulizer every night and my accapella 100 breaths a day. I know this is nothing compared to full blown people with cystic fibrosis, but i still am affected every day. When i was told that most men with CF were infertile, i felt as if my life did a complete 180 and i broke out crying. All i want in like are healthy children and when i was told that it was likely i was infertile, i was in complete shock. It's hard to cope with maybe being infertile when you really look foward to having children later in life.

Another major issue is explaining CF to my friends. The hardest thing about telling them about my CF is how they don't understand the severity of Cystic Fibrosis and the everyday life style change that comes along with CF. I feel as if they think im weird all of a sudden because i have this disease that they haven't heard of and truthfully, i hadn't heard of it until my doctor told me i had it. Sometimes i am ridiculed for my disease and it is made into a joke, and that hurts more than anything in the world.

There are some good things about CF and that is i have a deep deep appreciation for life and realize how precious every moment of life is. It's hard to have a constant positive attitude towards the disease because sometimes all you want to do is get into bed and cry and get all your feelings out, rather than hiding them within you.

i have never met someone else with CF and when no one can relate to you, it is weird. I try to tell my parents that they don't understand, and no matter what, they never will. You can't "understand" until you live with this horrible disease. it causes fights in the family and unwanted attention from other people.

i just need someone to relate to

thanks

 

[monkeysrock724]

<img src="">

I have borderline CF and i am a teenager and was just diagnosed in September of 06'. So far my life hasn't changed much physically, but emotionally it has hit hard. doing treatments like my nebulizer every night and my accapella 100 breaths a day. I know this is nothing compared to full blown people with cystic fibrosis, but i still am affected every day. When i was told that most men with CF were infertile, i felt as if my life did a complete 180 and i broke out crying. All i want in like are healthy children and when i was told that it was likely i was infertile, i was in complete shock. It's hard to cope with maybe being infertile when you really look foward to having children later in life.

Another major issue is explaining CF to my friends. The hardest thing about telling them about my CF is how they don't understand the severity of Cystic Fibrosis and the everyday life style change that comes along with CF. I feel as if they think im weird all of a sudden because i have this disease that they haven't heard of and truthfully, i hadn't heard of it until my doctor told me i had it. Sometimes i am ridiculed for my disease and it is made into a joke, and that hurts more than anything in the world.

There are some good things about CF and that is i have a deep deep appreciation for life and realize how precious every moment of life is. It's hard to have a constant positive attitude towards the disease because sometimes all you want to do is get into bed and cry and get all your feelings out, rather than hiding them within you.

i have never met someone else with CF and when no one can relate to you, it is weird. I try to tell my parents that they don't understand, and no matter what, they never will. You can't "understand" until you live with this horrible disease. it causes fights in the family and unwanted attention from other people.

i just need someone to relate to

thanks

 

[monkeysrock724]

<img src="">

I have borderline CF and i am a teenager and was just diagnosed in September of 06'. So far my life hasn't changed much physically, but emotionally it has hit hard. doing treatments like my nebulizer every night and my accapella 100 breaths a day. I know this is nothing compared to full blown people with cystic fibrosis, but i still am affected every day. When i was told that most men with CF were infertile, i felt as if my life did a complete 180 and i broke out crying. All i want in like are healthy children and when i was told that it was likely i was infertile, i was in complete shock. It's hard to cope with maybe being infertile when you really look foward to having children later in life.

Another major issue is explaining CF to my friends. The hardest thing about telling them about my CF is how they don't understand the severity of Cystic Fibrosis and the everyday life style change that comes along with CF. I feel as if they think im weird all of a sudden because i have this disease that they haven't heard of and truthfully, i hadn't heard of it until my doctor told me i had it. Sometimes i am ridiculed for my disease and it is made into a joke, and that hurts more than anything in the world.

There are some good things about CF and that is i have a deep deep appreciation for life and realize how precious every moment of life is. It's hard to have a constant positive attitude towards the disease because sometimes all you want to do is get into bed and cry and get all your feelings out, rather than hiding them within you.

i have never met someone else with CF and when no one can relate to you, it is weird. I try to tell my parents that they don't understand, and no matter what, they never will. You can't "understand" until you live with this horrible disease. it causes fights in the family and unwanted attention from other people.

i just need someone to relate to

thanks

 

[monkeysrock724]

<img src="">

I have borderline CF and i am a teenager and was just diagnosed in September of 06'. So far my life hasn't changed much physically, but emotionally it has hit hard. doing treatments like my nebulizer every night and my accapella 100 breaths a day. I know this is nothing compared to full blown people with cystic fibrosis, but i still am affected every day. When i was told that most men with CF were infertile, i felt as if my life did a complete 180 and i broke out crying. All i want in like are healthy children and when i was told that it was likely i was infertile, i was in complete shock. It's hard to cope with maybe being infertile when you really look foward to having children later in life.

Another major issue is explaining CF to my friends. The hardest thing about telling them about my CF is how they don't understand the severity of Cystic Fibrosis and the everyday life style change that comes along with CF. I feel as if they think im weird all of a sudden because i have this disease that they haven't heard of and truthfully, i hadn't heard of it until my doctor told me i had it. Sometimes i am ridiculed for my disease and it is made into a joke, and that hurts more than anything in the world.

There are some good things about CF and that is i have a deep deep appreciation for life and realize how precious every moment of life is. It's hard to have a constant positive attitude towards the disease because sometimes all you want to do is get into bed and cry and get all your feelings out, rather than hiding them within you.

i have never met someone else with CF and when no one can relate to you, it is weird. I try to tell my parents that they don't understand, and no matter what, they never will. You can't "understand" until you live with this horrible disease. it causes fights in the family and unwanted attention from other people.

i just need someone to relate to

thanks

 

[monkeysrock724]

<img src="">

I have borderline CF and i am a teenager and was just diagnosed in September of 06'. So far my life hasn't changed much physically, but emotionally it has hit hard. doing treatments like my nebulizer every night and my accapella 100 breaths a day. I know this is nothing compared to full blown people with cystic fibrosis, but i still am affected every day. When i was told that most men with CF were infertile, i felt as if my life did a complete 180 and i broke out crying. All i want in like are healthy children and when i was told that it was likely i was infertile, i was in complete shock. It's hard to cope with maybe being infertile when you really look foward to having children later in life.

Another major issue is explaining CF to my friends. The hardest thing about telling them about my CF is how they don't understand the severity of Cystic Fibrosis and the everyday life style change that comes along with CF. I feel as if they think im weird all of a sudden because i have this disease that they haven't heard of and truthfully, i hadn't heard of it until my doctor told me i had it. Sometimes i am ridiculed for my disease and it is made into a joke, and that hurts more than anything in the world.

There are some good things about CF and that is i have a deep deep appreciation for life and realize how precious every moment of life is. It's hard to have a constant positive attitude towards the disease because sometimes all you want to do is get into bed and cry and get all your feelings out, rather than hiding them within you.

i have never met someone else with CF and when no one can relate to you, it is weird. I try to tell my parents that they don't understand, and no matter what, they never will. You can't "understand" until you live with this horrible disease. it causes fights in the family and unwanted attention from other people.

i just need someone to relate to

thanks

 

[robert321]

i wasn't diagnosed until i was 14 and i basically never told anyone and everybody found out from rumors going around, in hindsight that was a stupid move, be up front with people that you want to know about your cf, it's none of the other people's business anyway, you're a guy so you have to act all tough, i went though the same thing. Don't let it define you and keep on with your life, when people treat you different call them on it, it'll stop. ignore the jokes and work on coming up with some good comeback oneliners, it'll all work out don't let it get you down

 

[robert321]

i wasn't diagnosed until i was 14 and i basically never told anyone and everybody found out from rumors going around, in hindsight that was a stupid move, be up front with people that you want to know about your cf, it's none of the other people's business anyway, you're a guy so you have to act all tough, i went though the same thing. Don't let it define you and keep on with your life, when people treat you different call them on it, it'll stop. ignore the jokes and work on coming up with some good comeback oneliners, it'll all work out don't let it get you down

 

[robert321]

i wasn't diagnosed until i was 14 and i basically never told anyone and everybody found out from rumors going around, in hindsight that was a stupid move, be up front with people that you want to know about your cf, it's none of the other people's business anyway, you're a guy so you have to act all tough, i went though the same thing. Don't let it define you and keep on with your life, when people treat you different call them on it, it'll stop. ignore the jokes and work on coming up with some good comeback oneliners, it'll all work out don't let it get you down

 

[robert321]

i wasn't diagnosed until i was 14 and i basically never told anyone and everybody found out from rumors going around, in hindsight that was a stupid move, be up front with people that you want to know about your cf, it's none of the other people's business anyway, you're a guy so you have to act all tough, i went though the same thing. Don't let it define you and keep on with your life, when people treat you different call them on it, it'll stop. ignore the jokes and work on coming up with some good comeback oneliners, it'll all work out don't let it get you down

 

[robert321]

i wasn't diagnosed until i was 14 and i basically never told anyone and everybody found out from rumors going around, in hindsight that was a stupid move, be up front with people that you want to know about your cf, it's none of the other people's business anyway, you're a guy so you have to act all tough, i went though the same thing. Don't let it define you and keep on with your life, when people treat you different call them on it, it'll stop. ignore the jokes and work on coming up with some good comeback oneliners, it'll all work out don't let it get you down

 

[robert321]

i wasn't diagnosed until i was 14 and i basically never told anyone and everybody found out from rumors going around, in hindsight that was a stupid move, be up front with people that you want to know about your cf, it's none of the other people's business anyway, you're a guy so you have to act all tough, i went though the same thing. Don't let it define you and keep on with your life, when people treat you different call them on it, it'll stop. ignore the jokes and work on coming up with some good comeback oneliners, it'll all work out don't let it get you down

 

[JORDYSMOM]

Hey there-

My son was dx at 15. He went through some of the same things you are talking about. He has some really awesome friends though. True friends who have made many changes so that my son can continue to come to their homes and ride in their cars, etc. The one's who smoked either quit or don't smoke around him. If these people are your true friends, they won't care that you have to be mindful of the little things.

Two years ago we had no clue what CF was either. This site has educated us more than anything we've read or been told by docs. Educate yourself as best you can. That will help you come up with those effective oneliners that Robert mentioned.

My son was very upset about the fertility issue as well. We have a big family with lots of children and he has always seen himself as a father someday. I will tell you what I told him. Just because you may not be able to be a biological father, doesn't mean you aren't meant to be somebody's daddy! My husband is a step father to my children. When I met him, I asked him if he had any kids. He said "yes but I just haven't met them yet". He did not know I had kids at the time. He knew he couldn't have children, but that he was supposed to be a dad someday. My boys are very close to him and he loves them as his own. There is always a reason for everything. If being a dad is important to you, you can make it happen.

Also - I know you think your parents don't understand how you feel. I think all teenagers think that way. You are right that no one every truly knows how another person feels. This is one of the reasons I come to this section of this site. I want to see what other teenagers are talking about. I want to know what is bothering my son. I can't speak for your parents, but I can speak for me. I would take this disease away from my son and put it on myself in a heart beat. I felt so guilty for "giving" him this awful disease. I know that I couldn't control what the genes did inside of me, but moms just feel guilty. Anyway, trust that your parents are as horrified as you are. All we want to do is protect our kids from awful things. This crappy disease is something we can't protect you guys from. That just really stinks!! I hope you can take this hand you've been dealt and do something positive with it. I will keep you and your parents in my prayers.

Stacey

 

[JORDYSMOM]

Hey there-

My son was dx at 15. He went through some of the same things you are talking about. He has some really awesome friends though. True friends who have made many changes so that my son can continue to come to their homes and ride in their cars, etc. The one's who smoked either quit or don't smoke around him. If these people are your true friends, they won't care that you have to be mindful of the little things.

Two years ago we had no clue what CF was either. This site has educated us more than anything we've read or been told by docs. Educate yourself as best you can. That will help you come up with those effective oneliners that Robert mentioned.

My son was very upset about the fertility issue as well. We have a big family with lots of children and he has always seen himself as a father someday. I will tell you what I told him. Just because you may not be able to be a biological father, doesn't mean you aren't meant to be somebody's daddy! My husband is a step father to my children. When I met him, I asked him if he had any kids. He said "yes but I just haven't met them yet". He did not know I had kids at the time. He knew he couldn't have children, but that he was supposed to be a dad someday. My boys are very close to him and he loves them as his own. There is always a reason for everything. If being a dad is important to you, you can make it happen.

Also - I know you think your parents don't understand how you feel. I think all teenagers think that way. You are right that no one every truly knows how another person feels. This is one of the reasons I come to this section of this site. I want to see what other teenagers are talking about. I want to know what is bothering my son. I can't speak for your parents, but I can speak for me. I would take this disease away from my son and put it on myself in a heart beat. I felt so guilty for "giving" him this awful disease. I know that I couldn't control what the genes did inside of me, but moms just feel guilty. Anyway, trust that your parents are as horrified as you are. All we want to do is protect our kids from awful things. This crappy disease is something we can't protect you guys from. That just really stinks!! I hope you can take this hand you've been dealt and do something positive with it. I will keep you and your parents in my prayers.

Stacey

 

[JORDYSMOM]

Hey there-

My son was dx at 15. He went through some of the same things you are talking about. He has some really awesome friends though. True friends who have made many changes so that my son can continue to come to their homes and ride in their cars, etc. The one's who smoked either quit or don't smoke around him. If these people are your true friends, they won't care that you have to be mindful of the little things.

Two years ago we had no clue what CF was either. This site has educated us more than anything we've read or been told by docs. Educate yourself as best you can. That will help you come up with those effective oneliners that Robert mentioned.

My son was very upset about the fertility issue as well. We have a big family with lots of children and he has always seen himself as a father someday. I will tell you what I told him. Just because you may not be able to be a biological father, doesn't mean you aren't meant to be somebody's daddy! My husband is a step father to my children. When I met him, I asked him if he had any kids. He said "yes but I just haven't met them yet". He did not know I had kids at the time. He knew he couldn't have children, but that he was supposed to be a dad someday. My boys are very close to him and he loves them as his own. There is always a reason for everything. If being a dad is important to you, you can make it happen.

Also - I know you think your parents don't understand how you feel. I think all teenagers think that way. You are right that no one every truly knows how another person feels. This is one of the reasons I come to this section of this site. I want to see what other teenagers are talking about. I want to know what is bothering my son. I can't speak for your parents, but I can speak for me. I would take this disease away from my son and put it on myself in a heart beat. I felt so guilty for "giving" him this awful disease. I know that I couldn't control what the genes did inside of me, but moms just feel guilty. Anyway, trust that your parents are as horrified as you are. All we want to do is protect our kids from awful things. This crappy disease is something we can't protect you guys from. That just really stinks!! I hope you can take this hand you've been dealt and do something positive with it. I will keep you and your parents in my prayers.

Stacey

 

[JORDYSMOM]

Hey there-

My son was dx at 15. He went through some of the same things you are talking about. He has some really awesome friends though. True friends who have made many changes so that my son can continue to come to their homes and ride in their cars, etc. The one's who smoked either quit or don't smoke around him. If these people are your true friends, they won't care that you have to be mindful of the little things.

Two years ago we had no clue what CF was either. This site has educated us more than anything we've read or been told by docs. Educate yourself as best you can. That will help you come up with those effective oneliners that Robert mentioned.

My son was very upset about the fertility issue as well. We have a big family with lots of children and he has always seen himself as a father someday. I will tell you what I told him. Just because you may not be able to be a biological father, doesn't mean you aren't meant to be somebody's daddy! My husband is a step father to my children. When I met him, I asked him if he had any kids. He said "yes but I just haven't met them yet". He did not know I had kids at the time. He knew he couldn't have children, but that he was supposed to be a dad someday. My boys are very close to him and he loves them as his own. There is always a reason for everything. If being a dad is important to you, you can make it happen.

Also - I know you think your parents don't understand how you feel. I think all teenagers think that way. You are right that no one every truly knows how another person feels. This is one of the reasons I come to this section of this site. I want to see what other teenagers are talking about. I want to know what is bothering my son. I can't speak for your parents, but I can speak for me. I would take this disease away from my son and put it on myself in a heart beat. I felt so guilty for "giving" him this awful disease. I know that I couldn't control what the genes did inside of me, but moms just feel guilty. Anyway, trust that your parents are as horrified as you are. All we want to do is protect our kids from awful things. This crappy disease is something we can't protect you guys from. That just really stinks!! I hope you can take this hand you've been dealt and do something positive with it. I will keep you and your parents in my prayers.

Stacey

 

[JORDYSMOM]

Hey there-

My son was dx at 15. He went through some of the same things you are talking about. He has some really awesome friends though. True friends who have made many changes so that my son can continue to come to their homes and ride in their cars, etc. The one's who smoked either quit or don't smoke around him. If these people are your true friends, they won't care that you have to be mindful of the little things.

Two years ago we had no clue what CF was either. This site has educated us more than anything we've read or been told by docs. Educate yourself as best you can. That will help you come up with those effective oneliners that Robert mentioned.

My son was very upset about the fertility issue as well. We have a big family with lots of children and he has always seen himself as a father someday. I will tell you what I told him. Just because you may not be able to be a biological father, doesn't mean you aren't meant to be somebody's daddy! My husband is a step father to my children. When I met him, I asked him if he had any kids. He said "yes but I just haven't met them yet". He did not know I had kids at the time. He knew he couldn't have children, but that he was supposed to be a dad someday. My boys are very close to him and he loves them as his own. There is always a reason for everything. If being a dad is important to you, you can make it happen.

Also - I know you think your parents don't understand how you feel. I think all teenagers think that way. You are right that no one every truly knows how another person feels. This is one of the reasons I come to this section of this site. I want to see what other teenagers are talking about. I want to know what is bothering my son. I can't speak for your parents, but I can speak for me. I would take this disease away from my son and put it on myself in a heart beat. I felt so guilty for "giving" him this awful disease. I know that I couldn't control what the genes did inside of me, but moms just feel guilty. Anyway, trust that your parents are as horrified as you are. All we want to do is protect our kids from awful things. This crappy disease is something we can't protect you guys from. That just really stinks!! I hope you can take this hand you've been dealt and do something positive with it. I will keep you and your parents in my prayers.

Stacey

 

[JORDYSMOM]

Hey there-

My son was dx at 15. He went through some of the same things you are talking about. He has some really awesome friends though. True friends who have made many changes so that my son can continue to come to their homes and ride in their cars, etc. The one's who smoked either quit or don't smoke around him. If these people are your true friends, they won't care that you have to be mindful of the little things.

Two years ago we had no clue what CF was either. This site has educated us more than anything we've read or been told by docs. Educate yourself as best you can. That will help you come up with those effective oneliners that Robert mentioned.

My son was very upset about the fertility issue as well. We have a big family with lots of children and he has always seen himself as a father someday. I will tell you what I told him. Just because you may not be able to be a biological father, doesn't mean you aren't meant to be somebody's daddy! My husband is a step father to my children. When I met him, I asked him if he had any kids. He said "yes but I just haven't met them yet". He did not know I had kids at the time. He knew he couldn't have children, but that he was supposed to be a dad someday. My boys are very close to him and he loves them as his own. There is always a reason for everything. If being a dad is important to you, you can make it happen.

Also - I know you think your parents don't understand how you feel. I think all teenagers think that way. You are right that no one every truly knows how another person feels. This is one of the reasons I come to this section of this site. I want to see what other teenagers are talking about. I want to know what is bothering my son. I can't speak for your parents, but I can speak for me. I would take this disease away from my son and put it on myself in a heart beat. I felt so guilty for "giving" him this awful disease. I know that I couldn't control what the genes did inside of me, but moms just feel guilty. Anyway, trust that your parents are as horrified as you are. All we want to do is protect our kids from awful things. This crappy disease is something we can't protect you guys from. That just really stinks!! I hope you can take this hand you've been dealt and do something positive with it. I will keep you and your parents in my prayers.

Stacey

 

[JazzysMom]

Not being a guy I cant totally relate, but let me say this. Until you are out of school & an "adult" things are rough. Well actually then you trade one set of rough things for another I guess because life can be cruel in general.

People (not just kids) can be cruel especially when its regarding something they dont know about. So IMHO its up to you to educate especially if part of the teasing is from lack of it!

Anyway...I wanted to point out that CF guys arent infertile as in never able to have biological kids of their own. They do produce sperm. It just cant get from point A to point B the traditional way and requires medical intervention. BUT even if they were infertile.......THAT shouldnt define you as a human. Being a MAN is much more then being a child producer.

 

[JazzysMom]

Not being a guy I cant totally relate, but let me say this. Until you are out of school & an "adult" things are rough. Well actually then you trade one set of rough things for another I guess because life can be cruel in general.

People (not just kids) can be cruel especially when its regarding something they dont know about. So IMHO its up to you to educate especially if part of the teasing is from lack of it!

Anyway...I wanted to point out that CF guys arent infertile as in never able to have biological kids of their own. They do produce sperm. It just cant get from point A to point B the traditional way and requires medical intervention. BUT even if they were infertile.......THAT shouldnt define you as a human. Being a MAN is much more then being a child producer.