Finding Peace

[CBJ]

Hello to everyone out there,I've enjoyed 26 years of life with CF now and it's been quite a ride. I'm writting to everyone just to get input on other people's views who live with CF in there life. My lungs are on the verge of needing oxygen since I won't get a lung transplant. My weight is low even though I eat more than any of my friends. Everyday it's something different even though it all starts out the same. I wake up and cough for an hr. then it's breakfast before I do my nebulizer. Then from there some days I feel good and other days I wish the day would end and tommarrow would come. I try to be as positive as I can be everyday but some days I really get down on CF. It's been good cause it made me the great person I've become but at the same time I feel it robbed me of a full life. If I didn't have music in my life it would be twice as hard to deal with. I've been trying lately to do things I use to be able to do but it hasn't been workin out to great. Going for nature walks to the beach are to hard,even fishing has been hard to do lately. I make up for the walks with driving around and fishing with going out with friends on the boat and driving only,but it's not the same. I'm lucky I have great friends who understand me and my disease and they help me out alot with support.Ofcourse I have a great family that helps me but it's important to me that my frinds are on board with me. These are some things on my mind and I will continue to use this forum to share and help along the way with this disease that controls are life Cystic Fibrosis. Thank you for listening
-Charlie
26 yrs old
Nantucket MA

 

[CBJ]

Hello to everyone out there,I've enjoyed 26 years of life with CF now and it's been quite a ride. I'm writting to everyone just to get input on other people's views who live with CF in there life. My lungs are on the verge of needing oxygen since I won't get a lung transplant. My weight is low even though I eat more than any of my friends. Everyday it's something different even though it all starts out the same. I wake up and cough for an hr. then it's breakfast before I do my nebulizer. Then from there some days I feel good and other days I wish the day would end and tommarrow would come. I try to be as positive as I can be everyday but some days I really get down on CF. It's been good cause it made me the great person I've become but at the same time I feel it robbed me of a full life. If I didn't have music in my life it would be twice as hard to deal with. I've been trying lately to do things I use to be able to do but it hasn't been workin out to great. Going for nature walks to the beach are to hard,even fishing has been hard to do lately. I make up for the walks with driving around and fishing with going out with friends on the boat and driving only,but it's not the same. I'm lucky I have great friends who understand me and my disease and they help me out alot with support.Ofcourse I have a great family that helps me but it's important to me that my frinds are on board with me. These are some things on my mind and I will continue to use this forum to share and help along the way with this disease that controls are life Cystic Fibrosis. Thank you for listening
-Charlie
26 yrs old
Nantucket MA

 

[CBJ]

Hello to everyone out there,I've enjoyed 26 years of life with CF now and it's been quite a ride. I'm writting to everyone just to get input on other people's views who live with CF in there life. My lungs are on the verge of needing oxygen since I won't get a lung transplant. My weight is low even though I eat more than any of my friends. Everyday it's something different even though it all starts out the same. I wake up and cough for an hr. then it's breakfast before I do my nebulizer. Then from there some days I feel good and other days I wish the day would end and tommarrow would come. I try to be as positive as I can be everyday but some days I really get down on CF. It's been good cause it made me the great person I've become but at the same time I feel it robbed me of a full life. If I didn't have music in my life it would be twice as hard to deal with. I've been trying lately to do things I use to be able to do but it hasn't been workin out to great. Going for nature walks to the beach are to hard,even fishing has been hard to do lately. I make up for the walks with driving around and fishing with going out with friends on the boat and driving only,but it's not the same. I'm lucky I have great friends who understand me and my disease and they help me out alot with support.Ofcourse I have a great family that helps me but it's important to me that my frinds are on board with me. These are some things on my mind and I will continue to use this forum to share and help along the way with this disease that controls are life Cystic Fibrosis. Thank you for listening
-Charlie
26 yrs old
Nantucket MA

 

[CBJ]

Hello to everyone out there,I've enjoyed 26 years of life with CF now and it's been quite a ride. I'm writting to everyone just to get input on other people's views who live with CF in there life. My lungs are on the verge of needing oxygen since I won't get a lung transplant. My weight is low even though I eat more than any of my friends. Everyday it's something different even though it all starts out the same. I wake up and cough for an hr. then it's breakfast before I do my nebulizer. Then from there some days I feel good and other days I wish the day would end and tommarrow would come. I try to be as positive as I can be everyday but some days I really get down on CF. It's been good cause it made me the great person I've become but at the same time I feel it robbed me of a full life. If I didn't have music in my life it would be twice as hard to deal with. I've been trying lately to do things I use to be able to do but it hasn't been workin out to great. Going for nature walks to the beach are to hard,even fishing has been hard to do lately. I make up for the walks with driving around and fishing with going out with friends on the boat and driving only,but it's not the same. I'm lucky I have great friends who understand me and my disease and they help me out alot with support.Ofcourse I have a great family that helps me but it's important to me that my frinds are on board with me. These are some things on my mind and I will continue to use this forum to share and help along the way with this disease that controls are life Cystic Fibrosis. Thank you for listening
-Charlie
26 yrs old
Nantucket MA

 

[CBJ]

Hello to everyone out there,I've enjoyed 26 years of life with CF now and it's been quite a ride. I'm writting to everyone just to get input on other people's views who live with CF in there life. My lungs are on the verge of needing oxygen since I won't get a lung transplant. My weight is low even though I eat more than any of my friends. Everyday it's something different even though it all starts out the same. I wake up and cough for an hr. then it's breakfast before I do my nebulizer. Then from there some days I feel good and other days I wish the day would end and tommarrow would come. I try to be as positive as I can be everyday but some days I really get down on CF. It's been good cause it made me the great person I've become but at the same time I feel it robbed me of a full life. If I didn't have music in my life it would be twice as hard to deal with. I've been trying lately to do things I use to be able to do but it hasn't been workin out to great. Going for nature walks to the beach are to hard,even fishing has been hard to do lately. I make up for the walks with driving around and fishing with going out with friends on the boat and driving only,but it's not the same. I'm lucky I have great friends who understand me and my disease and they help me out alot with support.Ofcourse I have a great family that helps me but it's important to me that my frinds are on board with me. These are some things on my mind and I will continue to use this forum to share and help along the way with this disease that controls are life Cystic Fibrosis. Thank you for listening
-Charlie
26 yrs old
Nantucket MA

 

[randmel89]

Hello Charlie,

My name is Melissa I am 33 with CF. I hope you find it very comfortable here. I haven't been here very long but I have meant some terrific and caring people. I understand everything you say about CF getting you down. I have days were I am thrilled to be alive and other days that feel like death is approaching.

You said you had music, may I ask if you play an instrument? or just like music in its self. My husband is a professional Bass player and has a band called Intrusted. I find his Christian Rock very comforting to me.

Hope to learn more about you.

Hugs

 

[randmel89]

Hello Charlie,

My name is Melissa I am 33 with CF. I hope you find it very comfortable here. I haven't been here very long but I have meant some terrific and caring people. I understand everything you say about CF getting you down. I have days were I am thrilled to be alive and other days that feel like death is approaching.

You said you had music, may I ask if you play an instrument? or just like music in its self. My husband is a professional Bass player and has a band called Intrusted. I find his Christian Rock very comforting to me.

Hope to learn more about you.

Hugs

 

[randmel89]

Hello Charlie,

My name is Melissa I am 33 with CF. I hope you find it very comfortable here. I haven't been here very long but I have meant some terrific and caring people. I understand everything you say about CF getting you down. I have days were I am thrilled to be alive and other days that feel like death is approaching.

You said you had music, may I ask if you play an instrument? or just like music in its self. My husband is a professional Bass player and has a band called Intrusted. I find his Christian Rock very comforting to me.

Hope to learn more about you.

Hugs

 

[randmel89]

Hello Charlie,

My name is Melissa I am 33 with CF. I hope you find it very comfortable here. I haven't been here very long but I have meant some terrific and caring people. I understand everything you say about CF getting you down. I have days were I am thrilled to be alive and other days that feel like death is approaching.

You said you had music, may I ask if you play an instrument? or just like music in its self. My husband is a professional Bass player and has a band called Intrusted. I find his Christian Rock very comforting to me.

Hope to learn more about you.

Hugs

 

[randmel89]

Hello Charlie,

My name is Melissa I am 33 with CF. I hope you find it very comfortable here. I haven't been here very long but I have meant some terrific and caring people. I understand everything you say about CF getting you down. I have days were I am thrilled to be alive and other days that feel like death is approaching.

You said you had music, may I ask if you play an instrument? or just like music in its self. My husband is a professional Bass player and has a band called Intrusted. I find his Christian Rock very comforting to me.

Hope to learn more about you.

Hugs

 

[CBJ]

Hello Melissa, good song by the way. Thank you for your input,I'm new to all of this too. Yes I play a few instruments.Piano,Guitar,Bass,Drums,and trying to learn the banjo this winter. Depends on the mood for what I need to listen too. Thank you once again and hope we all work together and find a cure.

CBJ

 

[CBJ]

Hello Melissa, good song by the way. Thank you for your input,I'm new to all of this too. Yes I play a few instruments.Piano,Guitar,Bass,Drums,and trying to learn the banjo this winter. Depends on the mood for what I need to listen too. Thank you once again and hope we all work together and find a cure.

CBJ

 

[CBJ]

Hello Melissa, good song by the way. Thank you for your input,I'm new to all of this too. Yes I play a few instruments.Piano,Guitar,Bass,Drums,and trying to learn the banjo this winter. Depends on the mood for what I need to listen too. Thank you once again and hope we all work together and find a cure.

CBJ

 

[CBJ]

Hello Melissa, good song by the way. Thank you for your input,I'm new to all of this too. Yes I play a few instruments.Piano,Guitar,Bass,Drums,and trying to learn the banjo this winter. Depends on the mood for what I need to listen too. Thank you once again and hope we all work together and find a cure.

CBJ

 

[CBJ]

Hello Melissa, good song by the way. Thank you for your input,I'm new to all of this too. Yes I play a few instruments.Piano,Guitar,Bass,Drums,and trying to learn the banjo this winter. Depends on the mood for what I need to listen too. Thank you once again and hope we all work together and find a cure.

CBJ

 

[Wheezie]

Welcome to the boards Charlie. I understand what you're feeling too. It is really hard to keep a positive outlook when there are some days it just seems likes it's pointless to even try. But there are other days where things just fall into place and I'm happy to be alive. I guess, as with anything, we take the good with the bad. If you want to share thoughts and feelings, these boards are a good place to do it. You can also start a blog, which is a great way to vent or just share stories and struggles. <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[Wheezie]

Welcome to the boards Charlie. I understand what you're feeling too. It is really hard to keep a positive outlook when there are some days it just seems likes it's pointless to even try. But there are other days where things just fall into place and I'm happy to be alive. I guess, as with anything, we take the good with the bad. If you want to share thoughts and feelings, these boards are a good place to do it. You can also start a blog, which is a great way to vent or just share stories and struggles. <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[Wheezie]

Welcome to the boards Charlie. I understand what you're feeling too. It is really hard to keep a positive outlook when there are some days it just seems likes it's pointless to even try. But there are other days where things just fall into place and I'm happy to be alive. I guess, as with anything, we take the good with the bad. If you want to share thoughts and feelings, these boards are a good place to do it. You can also start a blog, which is a great way to vent or just share stories and struggles. <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[Wheezie]

Welcome to the boards Charlie. I understand what you're feeling too. It is really hard to keep a positive outlook when there are some days it just seems likes it's pointless to even try. But there are other days where things just fall into place and I'm happy to be alive. I guess, as with anything, we take the good with the bad. If you want to share thoughts and feelings, these boards are a good place to do it. You can also start a blog, which is a great way to vent or just share stories and struggles. <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[Wheezie]

Welcome to the boards Charlie. I understand what you're feeling too. It is really hard to keep a positive outlook when there are some days it just seems likes it's pointless to even try. But there are other days where things just fall into place and I'm happy to be alive. I guess, as with anything, we take the good with the bad. If you want to share thoughts and feelings, these boards are a good place to do it. You can also start a blog, which is a great way to vent or just share stories and struggles. <img src="i/expressions/face-icon-small-happy.gif" border="0">