Can I vent for a minute??

[MamatoAlexa]

I have really debated posting this. I will probably try to figure out how to get the post deleted sometime in the near future but right now I need to get this out to people that really understand.

One of my sisters friends just had a baby that was DX with CF. Sis asked if she could pass my contact info along to the new Mom so she could contact me if/when she wants to talk about everything. I am all about supporting people with new CF dx. I am happy that my story can give hope to others. I did that interview on GMA for that exact reason, to give people hope. At the same time, I want to scream at my sister that it is not easy living with CF. We live 4 hours apart so she does not see the day to day struggle which thankfully is not terribly great for me at this point. Sure, I live a pretty "normal" life but that does not mean that everyday is easy and that I do not struggle. I guess my biggest vent is that even those close to use do not always understand what it is like to have to take time out of the day to do nebs and take pills or what it is like to feel self conscience about coughing or how draining a coughing fit can be or how frustrating it is when you are so tired but cannot sleep because you are coughing which only tires you out even more.

O.K. I feel better now! Normally I am so upbeat about living with CF but today the normal end of pregnancy aches, pains, hormones, raising a toddler and all of the CF crap has worn me down a touch!

 

[MamatoAlexa]

I have really debated posting this. I will probably try to figure out how to get the post deleted sometime in the near future but right now I need to get this out to people that really understand.

One of my sisters friends just had a baby that was DX with CF. Sis asked if she could pass my contact info along to the new Mom so she could contact me if/when she wants to talk about everything. I am all about supporting people with new CF dx. I am happy that my story can give hope to others. I did that interview on GMA for that exact reason, to give people hope. At the same time, I want to scream at my sister that it is not easy living with CF. We live 4 hours apart so she does not see the day to day struggle which thankfully is not terribly great for me at this point. Sure, I live a pretty "normal" life but that does not mean that everyday is easy and that I do not struggle. I guess my biggest vent is that even those close to use do not always understand what it is like to have to take time out of the day to do nebs and take pills or what it is like to feel self conscience about coughing or how draining a coughing fit can be or how frustrating it is when you are so tired but cannot sleep because you are coughing which only tires you out even more.

O.K. I feel better now! Normally I am so upbeat about living with CF but today the normal end of pregnancy aches, pains, hormones, raising a toddler and all of the CF crap has worn me down a touch!

 

[MamatoAlexa]

I have really debated posting this. I will probably try to figure out how to get the post deleted sometime in the near future but right now I need to get this out to people that really understand.

One of my sisters friends just had a baby that was DX with CF. Sis asked if she could pass my contact info along to the new Mom so she could contact me if/when she wants to talk about everything. I am all about supporting people with new CF dx. I am happy that my story can give hope to others. I did that interview on GMA for that exact reason, to give people hope. At the same time, I want to scream at my sister that it is not easy living with CF. We live 4 hours apart so she does not see the day to day struggle which thankfully is not terribly great for me at this point. Sure, I live a pretty "normal" life but that does not mean that everyday is easy and that I do not struggle. I guess my biggest vent is that even those close to use do not always understand what it is like to have to take time out of the day to do nebs and take pills or what it is like to feel self conscience about coughing or how draining a coughing fit can be or how frustrating it is when you are so tired but cannot sleep because you are coughing which only tires you out even more.

O.K. I feel better now! Normally I am so upbeat about living with CF but today the normal end of pregnancy aches, pains, hormones, raising a toddler and all of the CF crap has worn me down a touch!

 

[MamatoAlexa]

I have really debated posting this. I will probably try to figure out how to get the post deleted sometime in the near future but right now I need to get this out to people that really understand.

One of my sisters friends just had a baby that was DX with CF. Sis asked if she could pass my contact info along to the new Mom so she could contact me if/when she wants to talk about everything. I am all about supporting people with new CF dx. I am happy that my story can give hope to others. I did that interview on GMA for that exact reason, to give people hope. At the same time, I want to scream at my sister that it is not easy living with CF. We live 4 hours apart so she does not see the day to day struggle which thankfully is not terribly great for me at this point. Sure, I live a pretty "normal" life but that does not mean that everyday is easy and that I do not struggle. I guess my biggest vent is that even those close to use do not always understand what it is like to have to take time out of the day to do nebs and take pills or what it is like to feel self conscience about coughing or how draining a coughing fit can be or how frustrating it is when you are so tired but cannot sleep because you are coughing which only tires you out even more.

O.K. I feel better now! Normally I am so upbeat about living with CF but today the normal end of pregnancy aches, pains, hormones, raising a toddler and all of the CF crap has worn me down a touch!

 

[MamatoAlexa]

I have really debated posting this. I will probably try to figure out how to get the post deleted sometime in the near future but right now I need to get this out to people that really understand.

One of my sisters friends just had a baby that was DX with CF. Sis asked if she could pass my contact info along to the new Mom so she could contact me if/when she wants to talk about everything. I am all about supporting people with new CF dx. I am happy that my story can give hope to others. I did that interview on GMA for that exact reason, to give people hope. At the same time, I want to scream at my sister that it is not easy living with CF. We live 4 hours apart so she does not see the day to day struggle which thankfully is not terribly great for me at this point. Sure, I live a pretty "normal" life but that does not mean that everyday is easy and that I do not struggle. I guess my biggest vent is that even those close to use do not always understand what it is like to have to take time out of the day to do nebs and take pills or what it is like to feel self conscience about coughing or how draining a coughing fit can be or how frustrating it is when you are so tired but cannot sleep because you are coughing which only tires you out even more.

O.K. I feel better now! Normally I am so upbeat about living with CF but today the normal end of pregnancy aches, pains, hormones, raising a toddler and all of the CF crap has worn me down a touch!

 

[rubyroselee]

Hi Anne,

I totally understand you when you say you were not sure about posting that. I would have felt the same way. I have always been upbeat about my CF and have always taken a positive approach to it. There are always "down" days of course.

It's like you want to tell the world that things can be nice and normal for some of us for the time being, but you always know in the back of your head how serious this disease is and how it affects you every day. It is mentally draining, physically draining, and even social draining. You want to be able to tell this newly-diagnosed family that things will be okay, but sometimes it's not.

It's so hard to explain to a newly-diagnosed family what it's like to have CF. I once went a support group for parents with CF children when I was a teenager. (TonyaH might remember that if she's reading this). Anyhow, I was there to give them support and answer their questions to the best of my ability. There are no right answers because you can only go from your life experiences with CF.

If you decide to talk to this child's parents, let them be the lead. Let them ask their questions and you can answer the best you can. Be honest and open, but keep in mind that you have no idea how they might handle the information you tell them.

I would just be your upbeat and "hopeful" person that you are. And as I've told you before, I was one of those people that you gave hope to when I saw your story on GMA.

 

[rubyroselee]

Hi Anne,

I totally understand you when you say you were not sure about posting that. I would have felt the same way. I have always been upbeat about my CF and have always taken a positive approach to it. There are always "down" days of course.

It's like you want to tell the world that things can be nice and normal for some of us for the time being, but you always know in the back of your head how serious this disease is and how it affects you every day. It is mentally draining, physically draining, and even social draining. You want to be able to tell this newly-diagnosed family that things will be okay, but sometimes it's not.

It's so hard to explain to a newly-diagnosed family what it's like to have CF. I once went a support group for parents with CF children when I was a teenager. (TonyaH might remember that if she's reading this). Anyhow, I was there to give them support and answer their questions to the best of my ability. There are no right answers because you can only go from your life experiences with CF.

If you decide to talk to this child's parents, let them be the lead. Let them ask their questions and you can answer the best you can. Be honest and open, but keep in mind that you have no idea how they might handle the information you tell them.

I would just be your upbeat and "hopeful" person that you are. And as I've told you before, I was one of those people that you gave hope to when I saw your story on GMA.

 

[rubyroselee]

Hi Anne,

I totally understand you when you say you were not sure about posting that. I would have felt the same way. I have always been upbeat about my CF and have always taken a positive approach to it. There are always "down" days of course.

It's like you want to tell the world that things can be nice and normal for some of us for the time being, but you always know in the back of your head how serious this disease is and how it affects you every day. It is mentally draining, physically draining, and even social draining. You want to be able to tell this newly-diagnosed family that things will be okay, but sometimes it's not.

It's so hard to explain to a newly-diagnosed family what it's like to have CF. I once went a support group for parents with CF children when I was a teenager. (TonyaH might remember that if she's reading this). Anyhow, I was there to give them support and answer their questions to the best of my ability. There are no right answers because you can only go from your life experiences with CF.

If you decide to talk to this child's parents, let them be the lead. Let them ask their questions and you can answer the best you can. Be honest and open, but keep in mind that you have no idea how they might handle the information you tell them.

I would just be your upbeat and "hopeful" person that you are. And as I've told you before, I was one of those people that you gave hope to when I saw your story on GMA.

 

[rubyroselee]

Hi Anne,

I totally understand you when you say you were not sure about posting that. I would have felt the same way. I have always been upbeat about my CF and have always taken a positive approach to it. There are always "down" days of course.

It's like you want to tell the world that things can be nice and normal for some of us for the time being, but you always know in the back of your head how serious this disease is and how it affects you every day. It is mentally draining, physically draining, and even social draining. You want to be able to tell this newly-diagnosed family that things will be okay, but sometimes it's not.

It's so hard to explain to a newly-diagnosed family what it's like to have CF. I once went a support group for parents with CF children when I was a teenager. (TonyaH might remember that if she's reading this). Anyhow, I was there to give them support and answer their questions to the best of my ability. There are no right answers because you can only go from your life experiences with CF.

If you decide to talk to this child's parents, let them be the lead. Let them ask their questions and you can answer the best you can. Be honest and open, but keep in mind that you have no idea how they might handle the information you tell them.

I would just be your upbeat and "hopeful" person that you are. And as I've told you before, I was one of those people that you gave hope to when I saw your story on GMA.

 

[rubyroselee]

Hi Anne,

I totally understand you when you say you were not sure about posting that. I would have felt the same way. I have always been upbeat about my CF and have always taken a positive approach to it. There are always "down" days of course.

It's like you want to tell the world that things can be nice and normal for some of us for the time being, but you always know in the back of your head how serious this disease is and how it affects you every day. It is mentally draining, physically draining, and even social draining. You want to be able to tell this newly-diagnosed family that things will be okay, but sometimes it's not.

It's so hard to explain to a newly-diagnosed family what it's like to have CF. I once went a support group for parents with CF children when I was a teenager. (TonyaH might remember that if she's reading this). Anyhow, I was there to give them support and answer their questions to the best of my ability. There are no right answers because you can only go from your life experiences with CF.

If you decide to talk to this child's parents, let them be the lead. Let them ask their questions and you can answer the best you can. Be honest and open, but keep in mind that you have no idea how they might handle the information you tell them.

I would just be your upbeat and "hopeful" person that you are. And as I've told you before, I was one of those people that you gave hope to when I saw your story on GMA.

 

[ashleydog]

I understand what you mean, so many in my family forget ( or never realized) the extent of what CF means to my life. I guess we have done sucha good job of being positive, they forget all about the big negatives. My uncle and aunt who are a doctor and nurse, didn't even get it. We talked about it for a while this year after they had me meet and encourage a girl with cf who was having a rough time. I try and be honest with people, yes my health is relativley good right now, but I have lost so many friends to CF too.

 

[ashleydog]

I understand what you mean, so many in my family forget ( or never realized) the extent of what CF means to my life. I guess we have done sucha good job of being positive, they forget all about the big negatives. My uncle and aunt who are a doctor and nurse, didn't even get it. We talked about it for a while this year after they had me meet and encourage a girl with cf who was having a rough time. I try and be honest with people, yes my health is relativley good right now, but I have lost so many friends to CF too.

 

[ashleydog]

I understand what you mean, so many in my family forget ( or never realized) the extent of what CF means to my life. I guess we have done sucha good job of being positive, they forget all about the big negatives. My uncle and aunt who are a doctor and nurse, didn't even get it. We talked about it for a while this year after they had me meet and encourage a girl with cf who was having a rough time. I try and be honest with people, yes my health is relativley good right now, but I have lost so many friends to CF too.

 

[ashleydog]

I understand what you mean, so many in my family forget ( or never realized) the extent of what CF means to my life. I guess we have done sucha good job of being positive, they forget all about the big negatives. My uncle and aunt who are a doctor and nurse, didn't even get it. We talked about it for a while this year after they had me meet and encourage a girl with cf who was having a rough time. I try and be honest with people, yes my health is relativley good right now, but I have lost so many friends to CF too.

 

[ashleydog]

I understand what you mean, so many in my family forget ( or never realized) the extent of what CF means to my life. I guess we have done sucha good job of being positive, they forget all about the big negatives. My uncle and aunt who are a doctor and nurse, didn't even get it. We talked about it for a while this year after they had me meet and encourage a girl with cf who was having a rough time. I try and be honest with people, yes my health is relativley good right now, but I have lost so many friends to CF too.

 

[Keepercjr]

I think that unless they are by your side day in and day out or you post a running blog detailing every health event, nobody besides immediate family will have a clue. I think even my DH doesn't really get it sometimes. My mom over reacts, my dad is ok with it all, and everyone else just kinda waits for my reaction to anything. If I downplay it or stay upbeat then they figure no big deal.

This past summer I went to a gathering at my aunt and uncle's house (5 hours away). They had several people over as it was their grandaughter's birthday. It was an outside pool party kinda deal and lots of them were smoking (not my family but their friends, etc) all around the pool and tables. They live on a few acres so there was A LOT of space for them to walk away and smoke. I don't know them very well so I asked my aunt if she thought it would be appropriate if she asked them to smoke in the driveway instead of around the kids and especially ME. She said no, she wasn't going to say anything. They were outside and were fine. It really pissed me off. This is a woman who has driven 5 hours to come to our CF walks and knew all about the struggle my parents (her and my dad are siblings) had with my brother till he died at age 13. Yet she doesn't get it at all.

Hope you can help the family - I have a local friend w/ a 2 yo w/ CF and she calls me all the time to ask questions. I like to think I'm helping her a bit.

Gotta run

 

[Keepercjr]

I think that unless they are by your side day in and day out or you post a running blog detailing every health event, nobody besides immediate family will have a clue. I think even my DH doesn't really get it sometimes. My mom over reacts, my dad is ok with it all, and everyone else just kinda waits for my reaction to anything. If I downplay it or stay upbeat then they figure no big deal.

This past summer I went to a gathering at my aunt and uncle's house (5 hours away). They had several people over as it was their grandaughter's birthday. It was an outside pool party kinda deal and lots of them were smoking (not my family but their friends, etc) all around the pool and tables. They live on a few acres so there was A LOT of space for them to walk away and smoke. I don't know them very well so I asked my aunt if she thought it would be appropriate if she asked them to smoke in the driveway instead of around the kids and especially ME. She said no, she wasn't going to say anything. They were outside and were fine. It really pissed me off. This is a woman who has driven 5 hours to come to our CF walks and knew all about the struggle my parents (her and my dad are siblings) had with my brother till he died at age 13. Yet she doesn't get it at all.

Hope you can help the family - I have a local friend w/ a 2 yo w/ CF and she calls me all the time to ask questions. I like to think I'm helping her a bit.

Gotta run

 

[Keepercjr]

I think that unless they are by your side day in and day out or you post a running blog detailing every health event, nobody besides immediate family will have a clue. I think even my DH doesn't really get it sometimes. My mom over reacts, my dad is ok with it all, and everyone else just kinda waits for my reaction to anything. If I downplay it or stay upbeat then they figure no big deal.

This past summer I went to a gathering at my aunt and uncle's house (5 hours away). They had several people over as it was their grandaughter's birthday. It was an outside pool party kinda deal and lots of them were smoking (not my family but their friends, etc) all around the pool and tables. They live on a few acres so there was A LOT of space for them to walk away and smoke. I don't know them very well so I asked my aunt if she thought it would be appropriate if she asked them to smoke in the driveway instead of around the kids and especially ME. She said no, she wasn't going to say anything. They were outside and were fine. It really pissed me off. This is a woman who has driven 5 hours to come to our CF walks and knew all about the struggle my parents (her and my dad are siblings) had with my brother till he died at age 13. Yet she doesn't get it at all.

Hope you can help the family - I have a local friend w/ a 2 yo w/ CF and she calls me all the time to ask questions. I like to think I'm helping her a bit.

Gotta run

 

[Keepercjr]

I think that unless they are by your side day in and day out or you post a running blog detailing every health event, nobody besides immediate family will have a clue. I think even my DH doesn't really get it sometimes. My mom over reacts, my dad is ok with it all, and everyone else just kinda waits for my reaction to anything. If I downplay it or stay upbeat then they figure no big deal.

This past summer I went to a gathering at my aunt and uncle's house (5 hours away). They had several people over as it was their grandaughter's birthday. It was an outside pool party kinda deal and lots of them were smoking (not my family but their friends, etc) all around the pool and tables. They live on a few acres so there was A LOT of space for them to walk away and smoke. I don't know them very well so I asked my aunt if she thought it would be appropriate if she asked them to smoke in the driveway instead of around the kids and especially ME. She said no, she wasn't going to say anything. They were outside and were fine. It really pissed me off. This is a woman who has driven 5 hours to come to our CF walks and knew all about the struggle my parents (her and my dad are siblings) had with my brother till he died at age 13. Yet she doesn't get it at all.

Hope you can help the family - I have a local friend w/ a 2 yo w/ CF and she calls me all the time to ask questions. I like to think I'm helping her a bit.

Gotta run

 

[Keepercjr]

I think that unless they are by your side day in and day out or you post a running blog detailing every health event, nobody besides immediate family will have a clue. I think even my DH doesn't really get it sometimes. My mom over reacts, my dad is ok with it all, and everyone else just kinda waits for my reaction to anything. If I downplay it or stay upbeat then they figure no big deal.

This past summer I went to a gathering at my aunt and uncle's house (5 hours away). They had several people over as it was their grandaughter's birthday. It was an outside pool party kinda deal and lots of them were smoking (not my family but their friends, etc) all around the pool and tables. They live on a few acres so there was A LOT of space for them to walk away and smoke. I don't know them very well so I asked my aunt if she thought it would be appropriate if she asked them to smoke in the driveway instead of around the kids and especially ME. She said no, she wasn't going to say anything. They were outside and were fine. It really pissed me off. This is a woman who has driven 5 hours to come to our CF walks and knew all about the struggle my parents (her and my dad are siblings) had with my brother till he died at age 13. Yet she doesn't get it at all.

Hope you can help the family - I have a local friend w/ a 2 yo w/ CF and she calls me all the time to ask questions. I like to think I'm helping her a bit.

Gotta run