Is this how you feel about CF?

N

NYCLawGirl

New member
I have to agree with Mel, who I think was extremely brave in being honest btw (just my humble opinion). I absolutely love my life, and I'm willing to do whatever it takes to keep fighting, but at the same time I recognize that "life" is more than just survival. As CF progresses it definitely becomes a daily struggle just to breathe, not to mention doing other things that may have been possible before (like hiking, or camping for me). I think when Mel mentioned that CF can "take away one's spirit" that was the best description...sometimes I feel like CF has "stolen" some of the most important things in my life. I hope to regain some of this through tx, of course, but I don't harbor any delusions about tx being a "cure." CF will eventually win, I guess, and in that sense the fight (while totally meaningful) is still somewhat of a "postponement of dying."

PLEASE don't take this as being general. IMHO, CF is WAY too variant between individuals to make generalzations!
 
N

NYCLawGirl

New member
I have to agree with Mel, who I think was extremely brave in being honest btw (just my humble opinion). I absolutely love my life, and I'm willing to do whatever it takes to keep fighting, but at the same time I recognize that "life" is more than just survival. As CF progresses it definitely becomes a daily struggle just to breathe, not to mention doing other things that may have been possible before (like hiking, or camping for me). I think when Mel mentioned that CF can "take away one's spirit" that was the best description...sometimes I feel like CF has "stolen" some of the most important things in my life. I hope to regain some of this through tx, of course, but I don't harbor any delusions about tx being a "cure." CF will eventually win, I guess, and in that sense the fight (while totally meaningful) is still somewhat of a "postponement of dying."

PLEASE don't take this as being general. IMHO, CF is WAY too variant between individuals to make generalzations!
 
N

NYCLawGirl

New member
I have to agree with Mel, who I think was extremely brave in being honest btw (just my humble opinion). I absolutely love my life, and I'm willing to do whatever it takes to keep fighting, but at the same time I recognize that "life" is more than just survival. As CF progresses it definitely becomes a daily struggle just to breathe, not to mention doing other things that may have been possible before (like hiking, or camping for me). I think when Mel mentioned that CF can "take away one's spirit" that was the best description...sometimes I feel like CF has "stolen" some of the most important things in my life. I hope to regain some of this through tx, of course, but I don't harbor any delusions about tx being a "cure." CF will eventually win, I guess, and in that sense the fight (while totally meaningful) is still somewhat of a "postponement of dying."

PLEASE don't take this as being general. IMHO, CF is WAY too variant between individuals to make generalzations!
 
N

NYCLawGirl

New member
I have to agree with Mel, who I think was extremely brave in being honest btw (just my humble opinion). I absolutely love my life, and I'm willing to do whatever it takes to keep fighting, but at the same time I recognize that "life" is more than just survival. As CF progresses it definitely becomes a daily struggle just to breathe, not to mention doing other things that may have been possible before (like hiking, or camping for me). I think when Mel mentioned that CF can "take away one's spirit" that was the best description...sometimes I feel like CF has "stolen" some of the most important things in my life. I hope to regain some of this through tx, of course, but I don't harbor any delusions about tx being a "cure." CF will eventually win, I guess, and in that sense the fight (while totally meaningful) is still somewhat of a "postponement of dying."

PLEASE don't take this as being general. IMHO, CF is WAY too variant between individuals to make generalzations!
 
N

NYCLawGirl

New member
I have to agree with Mel, who I think was extremely brave in being honest btw (just my humble opinion). I absolutely love my life, and I'm willing to do whatever it takes to keep fighting, but at the same time I recognize that "life" is more than just survival. As CF progresses it definitely becomes a daily struggle just to breathe, not to mention doing other things that may have been possible before (like hiking, or camping for me). I think when Mel mentioned that CF can "take away one's spirit" that was the best description...sometimes I feel like CF has "stolen" some of the most important things in my life. I hope to regain some of this through tx, of course, but I don't harbor any delusions about tx being a "cure." CF will eventually win, I guess, and in that sense the fight (while totally meaningful) is still somewhat of a "postponement of dying."
<br />
<br />PLEASE don't take this as being general. IMHO, CF is WAY too variant between individuals to make generalzations!
 
F

Faust

New member
Technically, and at times quite literally, life with CF is a constant struggle to stay alive. There aren't too many other diseases that require the type of time, energy, and emotional investment that CF takes. Throw in more and more of one of us trying to be a normal person with a job/career, house, kids maybe, college, and eventually everyone breaks to some extent or in some way. I personally do 5-5 1/2 hours of treatments per day. Then I do 2 huge nasal rinses per day to help fight off my sinus crap. I make it a point to eat healthy, and for many CF's that is a horrible fight in itself. If you have CF and take care of yourself properly AND work full time (and do nebs and vest the old non e-flow way) you are basically working two full time jobs @ 70-80 hours per week just spent trying to earn money/keep health insurance/and stay alive. Then you have people like myself who spend a good deal of money on supplements to battle the symptoms and other conditions associated with the disease, and this can be VERY costly. Then you have those who do the smart thing and exercise/work out, which is another time sink normal people don't have the time for, yet alone us. I could go on and on and most on here know what I'm saying.


I'm 37 and in great shape with this disease, and I bust my ass and get down about it at times. There are others on here who aren't as healthy as me and are having a much more difficult time trying to stay alive than I am. In general, if we are being honest with ourselves, I think yes life with CF is a big struggle.
 
F

Faust

New member
Technically, and at times quite literally, life with CF is a constant struggle to stay alive. There aren't too many other diseases that require the type of time, energy, and emotional investment that CF takes. Throw in more and more of one of us trying to be a normal person with a job/career, house, kids maybe, college, and eventually everyone breaks to some extent or in some way. I personally do 5-5 1/2 hours of treatments per day. Then I do 2 huge nasal rinses per day to help fight off my sinus crap. I make it a point to eat healthy, and for many CF's that is a horrible fight in itself. If you have CF and take care of yourself properly AND work full time (and do nebs and vest the old non e-flow way) you are basically working two full time jobs @ 70-80 hours per week just spent trying to earn money/keep health insurance/and stay alive. Then you have people like myself who spend a good deal of money on supplements to battle the symptoms and other conditions associated with the disease, and this can be VERY costly. Then you have those who do the smart thing and exercise/work out, which is another time sink normal people don't have the time for, yet alone us. I could go on and on and most on here know what I'm saying.


I'm 37 and in great shape with this disease, and I bust my ass and get down about it at times. There are others on here who aren't as healthy as me and are having a much more difficult time trying to stay alive than I am. In general, if we are being honest with ourselves, I think yes life with CF is a big struggle.
 
F

Faust

New member
Technically, and at times quite literally, life with CF is a constant struggle to stay alive. There aren't too many other diseases that require the type of time, energy, and emotional investment that CF takes. Throw in more and more of one of us trying to be a normal person with a job/career, house, kids maybe, college, and eventually everyone breaks to some extent or in some way. I personally do 5-5 1/2 hours of treatments per day. Then I do 2 huge nasal rinses per day to help fight off my sinus crap. I make it a point to eat healthy, and for many CF's that is a horrible fight in itself. If you have CF and take care of yourself properly AND work full time (and do nebs and vest the old non e-flow way) you are basically working two full time jobs @ 70-80 hours per week just spent trying to earn money/keep health insurance/and stay alive. Then you have people like myself who spend a good deal of money on supplements to battle the symptoms and other conditions associated with the disease, and this can be VERY costly. Then you have those who do the smart thing and exercise/work out, which is another time sink normal people don't have the time for, yet alone us. I could go on and on and most on here know what I'm saying.


I'm 37 and in great shape with this disease, and I bust my ass and get down about it at times. There are others on here who aren't as healthy as me and are having a much more difficult time trying to stay alive than I am. In general, if we are being honest with ourselves, I think yes life with CF is a big struggle.
 
F

Faust

New member
Technically, and at times quite literally, life with CF is a constant struggle to stay alive. There aren't too many other diseases that require the type of time, energy, and emotional investment that CF takes. Throw in more and more of one of us trying to be a normal person with a job/career, house, kids maybe, college, and eventually everyone breaks to some extent or in some way. I personally do 5-5 1/2 hours of treatments per day. Then I do 2 huge nasal rinses per day to help fight off my sinus crap. I make it a point to eat healthy, and for many CF's that is a horrible fight in itself. If you have CF and take care of yourself properly AND work full time (and do nebs and vest the old non e-flow way) you are basically working two full time jobs @ 70-80 hours per week just spent trying to earn money/keep health insurance/and stay alive. Then you have people like myself who spend a good deal of money on supplements to battle the symptoms and other conditions associated with the disease, and this can be VERY costly. Then you have those who do the smart thing and exercise/work out, which is another time sink normal people don't have the time for, yet alone us. I could go on and on and most on here know what I'm saying.


I'm 37 and in great shape with this disease, and I bust my ass and get down about it at times. There are others on here who aren't as healthy as me and are having a much more difficult time trying to stay alive than I am. In general, if we are being honest with ourselves, I think yes life with CF is a big struggle.
 
F

Faust

New member
Technically, and at times quite literally, life with CF is a constant struggle to stay alive. There aren't too many other diseases that require the type of time, energy, and emotional investment that CF takes. Throw in more and more of one of us trying to be a normal person with a job/career, house, kids maybe, college, and eventually everyone breaks to some extent or in some way. I personally do 5-5 1/2 hours of treatments per day. Then I do 2 huge nasal rinses per day to help fight off my sinus crap. I make it a point to eat healthy, and for many CF's that is a horrible fight in itself. If you have CF and take care of yourself properly AND work full time (and do nebs and vest the old non e-flow way) you are basically working two full time jobs @ 70-80 hours per week just spent trying to earn money/keep health insurance/and stay alive. Then you have people like myself who spend a good deal of money on supplements to battle the symptoms and other conditions associated with the disease, and this can be VERY costly. Then you have those who do the smart thing and exercise/work out, which is another time sink normal people don't have the time for, yet alone us. I could go on and on and most on here know what I'm saying.
<br />
<br />
<br />I'm 37 and in great shape with this disease, and I bust my ass and get down about it at times. There are others on here who aren't as healthy as me and are having a much more difficult time trying to stay alive than I am. In general, if we are being honest with ourselves, I think yes life with CF is a big struggle.
<br />
<br />
 
M

MargaritaChic

New member
Being able to get the viewpoint of people who have (and continue) to struggle with CF is so helpful to me.

I think you are all amazing people and I appreciate your honest answers.

My hope for my daughter is that she can grow up and know that CF will be a part of her life but will not define who she is.
 
M

MargaritaChic

New member
Being able to get the viewpoint of people who have (and continue) to struggle with CF is so helpful to me.

I think you are all amazing people and I appreciate your honest answers.

My hope for my daughter is that she can grow up and know that CF will be a part of her life but will not define who she is.
 
M

MargaritaChic

New member
Being able to get the viewpoint of people who have (and continue) to struggle with CF is so helpful to me.

I think you are all amazing people and I appreciate your honest answers.

My hope for my daughter is that she can grow up and know that CF will be a part of her life but will not define who she is.
 
M

MargaritaChic

New member
Being able to get the viewpoint of people who have (and continue) to struggle with CF is so helpful to me.

I think you are all amazing people and I appreciate your honest answers.

My hope for my daughter is that she can grow up and know that CF will be a part of her life but will not define who she is.
 
M

MargaritaChic

New member
Being able to get the viewpoint of people who have (and continue) to struggle with CF is so helpful to me.
<br />
<br />I think you are all amazing people and I appreciate your honest answers.
<br />
<br />My hope for my daughter is that she can grow up and know that CF will be a part of her life but will not define who she is.
 
S

SeeEff

Guest
a constant struggle just to stay alive?

hmmm, no. I feel like it's a constant struggle to stay healthy.
breathing treatments, pills, keeping weight up, exercising, staying away from sick people, etc.
 
S

SeeEff

Guest
a constant struggle just to stay alive?

hmmm, no. I feel like it's a constant struggle to stay healthy.
breathing treatments, pills, keeping weight up, exercising, staying away from sick people, etc.
 
S

SeeEff

Guest
a constant struggle just to stay alive?

hmmm, no. I feel like it's a constant struggle to stay healthy.
breathing treatments, pills, keeping weight up, exercising, staying away from sick people, etc.
 
S

SeeEff

Guest
a constant struggle just to stay alive?

hmmm, no. I feel like it's a constant struggle to stay healthy.
breathing treatments, pills, keeping weight up, exercising, staying away from sick people, etc.
 
S

SeeEff

Guest
a constant struggle just to stay alive?
<br />
<br />hmmm, no. I feel like it's a constant struggle to stay healthy.
<br />breathing treatments, pills, keeping weight up, exercising, staying away from sick people, etc.
 
You must log in or register to reply here.
Top