What Does Fighting CF Mean To You?

C

CowTown

New member
I'm curious, what does 'Fighting CF" mean to you?

When someone tells you, "Keep fighting!", and you think to yourself, Oh yes, I am fighting the good fight, or I will always fight..... what are some of those ways you're fighting? Is it that you get up everyday and do your treatments, is it that you are enjoying life so that means you're 'fighting? Or does fighting just mean dealing with it?
 
C

CowTown

New member
I'm curious, what does 'Fighting CF" mean to you?

When someone tells you, "Keep fighting!", and you think to yourself, Oh yes, I am fighting the good fight, or I will always fight..... what are some of those ways you're fighting? Is it that you get up everyday and do your treatments, is it that you are enjoying life so that means you're 'fighting? Or does fighting just mean dealing with it?
 
C

CowTown

New member
I'm curious, what does 'Fighting CF" mean to you?

When someone tells you, "Keep fighting!", and you think to yourself, Oh yes, I am fighting the good fight, or I will always fight..... what are some of those ways you're fighting? Is it that you get up everyday and do your treatments, is it that you are enjoying life so that means you're 'fighting? Or does fighting just mean dealing with it?
 
C

CowTown

New member
I'm curious, what does 'Fighting CF" mean to you?

When someone tells you, "Keep fighting!", and you think to yourself, Oh yes, I am fighting the good fight, or I will always fight..... what are some of those ways you're fighting? Is it that you get up everyday and do your treatments, is it that you are enjoying life so that means you're 'fighting? Or does fighting just mean dealing with it?
 
C

CowTown

New member
I'm curious, what does 'Fighting CF" mean to you?

When someone tells you, "Keep fighting!", and you think to yourself, Oh yes, I am fighting the good fight, or I will always fight..... what are some of those ways you're fighting? Is it that you get up everyday and do your treatments, is it that you are enjoying life so that means you're 'fighting? Or does fighting just mean dealing with it?
 
K

ktsmom

New member
What Does Fighting Mean To You?

Right now "fighting CF" is refusing to allow CF to steal mine or my child's or my family's joy of life due to the following (or some variation of it, every single stinking day):

Katy and her sister made these elaborate plans last night so that THEY got to sleep on this air mattress we had made up for their cousins to sleep on over the weekend. So of course Katy falls asleep doing breathing treatments last night. This morning, she barely wakes up just as I'm finishing her MORNING breathing treatments and says, "Mommy, don't forget to put me on the special bed with Kyra". And when I gently say, "sweetie, it is morning time; night time is over; you already slept there" she just breaks down into the saddest thing you have ever seen. It took her 30 minutes to recover from that this morning - and every ounce of empathy and love I had to coax her out of it, reassure her, etc.

A small thing, I know, but this is how I "fight" CF. It is not going to incrementally keep stealing away my child's opportunities for the little joys of daily life.
 
K

ktsmom

New member
What Does Fighting Mean To You?

Right now "fighting CF" is refusing to allow CF to steal mine or my child's or my family's joy of life due to the following (or some variation of it, every single stinking day):

Katy and her sister made these elaborate plans last night so that THEY got to sleep on this air mattress we had made up for their cousins to sleep on over the weekend. So of course Katy falls asleep doing breathing treatments last night. This morning, she barely wakes up just as I'm finishing her MORNING breathing treatments and says, "Mommy, don't forget to put me on the special bed with Kyra". And when I gently say, "sweetie, it is morning time; night time is over; you already slept there" she just breaks down into the saddest thing you have ever seen. It took her 30 minutes to recover from that this morning - and every ounce of empathy and love I had to coax her out of it, reassure her, etc.

A small thing, I know, but this is how I "fight" CF. It is not going to incrementally keep stealing away my child's opportunities for the little joys of daily life.
 
K

ktsmom

New member
What Does Fighting Mean To You?

Right now "fighting CF" is refusing to allow CF to steal mine or my child's or my family's joy of life due to the following (or some variation of it, every single stinking day):

Katy and her sister made these elaborate plans last night so that THEY got to sleep on this air mattress we had made up for their cousins to sleep on over the weekend. So of course Katy falls asleep doing breathing treatments last night. This morning, she barely wakes up just as I'm finishing her MORNING breathing treatments and says, "Mommy, don't forget to put me on the special bed with Kyra". And when I gently say, "sweetie, it is morning time; night time is over; you already slept there" she just breaks down into the saddest thing you have ever seen. It took her 30 minutes to recover from that this morning - and every ounce of empathy and love I had to coax her out of it, reassure her, etc.

A small thing, I know, but this is how I "fight" CF. It is not going to incrementally keep stealing away my child's opportunities for the little joys of daily life.
 
K

ktsmom

New member
What Does Fighting Mean To You?

Right now "fighting CF" is refusing to allow CF to steal mine or my child's or my family's joy of life due to the following (or some variation of it, every single stinking day):

Katy and her sister made these elaborate plans last night so that THEY got to sleep on this air mattress we had made up for their cousins to sleep on over the weekend. So of course Katy falls asleep doing breathing treatments last night. This morning, she barely wakes up just as I'm finishing her MORNING breathing treatments and says, "Mommy, don't forget to put me on the special bed with Kyra". And when I gently say, "sweetie, it is morning time; night time is over; you already slept there" she just breaks down into the saddest thing you have ever seen. It took her 30 minutes to recover from that this morning - and every ounce of empathy and love I had to coax her out of it, reassure her, etc.

A small thing, I know, but this is how I "fight" CF. It is not going to incrementally keep stealing away my child's opportunities for the little joys of daily life.
 
K

ktsmom

New member
What Does Fighting Mean To You?

Right now "fighting CF" is refusing to allow CF to steal mine or my child's or my family's joy of life due to the following (or some variation of it, every single stinking day):

Katy and her sister made these elaborate plans last night so that THEY got to sleep on this air mattress we had made up for their cousins to sleep on over the weekend. So of course Katy falls asleep doing breathing treatments last night. This morning, she barely wakes up just as I'm finishing her MORNING breathing treatments and says, "Mommy, don't forget to put me on the special bed with Kyra". And when I gently say, "sweetie, it is morning time; night time is over; you already slept there" she just breaks down into the saddest thing you have ever seen. It took her 30 minutes to recover from that this morning - and every ounce of empathy and love I had to coax her out of it, reassure her, etc.

A small thing, I know, but this is how I "fight" CF. It is not going to incrementally keep stealing away my child's opportunities for the little joys of daily life.
 
A

Aka2007

New member
What Does Fighting Mean To You?

Fighting CF to me is getting my treatments done. But often I don't get them done and I end up with a bad cough or infection. Fighting CF also to me is keeping my body going even when I am soo hungry I feeling like I am going to die. I get my tube-feeding going and that to me is fighting CF. Fighting CF can also be working with my mind and trying to keep the happness and good things going and trying not to let the saying (I am going to die soon) get to me. Fighting CF is also getting up in the morning to try and just (live) get my meds going and treatments. But with CF I feel I never really (live) I fight to live. Fighting CF also to me is helping new docs and people who don't understand CF. Fighting CF is a very hard job but to me it's kind of like a war with time. If you don't do your treatments at the right time then it's a war with an infection. It is just so sad to me that two little genes can cause so many issues and so many sick people and children. That's fighing CF in my own words. And I find fighting CF is a job I could not do alone with out help from my mom. I thank her allot.

_____________________________________________________________
20/w CF F508 other not known
 
A

Aka2007

New member
What Does Fighting Mean To You?

Fighting CF to me is getting my treatments done. But often I don't get them done and I end up with a bad cough or infection. Fighting CF also to me is keeping my body going even when I am soo hungry I feeling like I am going to die. I get my tube-feeding going and that to me is fighting CF. Fighting CF can also be working with my mind and trying to keep the happness and good things going and trying not to let the saying (I am going to die soon) get to me. Fighting CF is also getting up in the morning to try and just (live) get my meds going and treatments. But with CF I feel I never really (live) I fight to live. Fighting CF also to me is helping new docs and people who don't understand CF. Fighting CF is a very hard job but to me it's kind of like a war with time. If you don't do your treatments at the right time then it's a war with an infection. It is just so sad to me that two little genes can cause so many issues and so many sick people and children. That's fighing CF in my own words. And I find fighting CF is a job I could not do alone with out help from my mom. I thank her allot.

_____________________________________________________________
20/w CF F508 other not known
 
A

Aka2007

New member
What Does Fighting Mean To You?

Fighting CF to me is getting my treatments done. But often I don't get them done and I end up with a bad cough or infection. Fighting CF also to me is keeping my body going even when I am soo hungry I feeling like I am going to die. I get my tube-feeding going and that to me is fighting CF. Fighting CF can also be working with my mind and trying to keep the happness and good things going and trying not to let the saying (I am going to die soon) get to me. Fighting CF is also getting up in the morning to try and just (live) get my meds going and treatments. But with CF I feel I never really (live) I fight to live. Fighting CF also to me is helping new docs and people who don't understand CF. Fighting CF is a very hard job but to me it's kind of like a war with time. If you don't do your treatments at the right time then it's a war with an infection. It is just so sad to me that two little genes can cause so many issues and so many sick people and children. That's fighing CF in my own words. And I find fighting CF is a job I could not do alone with out help from my mom. I thank her allot.

_____________________________________________________________
20/w CF F508 other not known
 
A

Aka2007

New member
What Does Fighting Mean To You?

Fighting CF to me is getting my treatments done. But often I don't get them done and I end up with a bad cough or infection. Fighting CF also to me is keeping my body going even when I am soo hungry I feeling like I am going to die. I get my tube-feeding going and that to me is fighting CF. Fighting CF can also be working with my mind and trying to keep the happness and good things going and trying not to let the saying (I am going to die soon) get to me. Fighting CF is also getting up in the morning to try and just (live) get my meds going and treatments. But with CF I feel I never really (live) I fight to live. Fighting CF also to me is helping new docs and people who don't understand CF. Fighting CF is a very hard job but to me it's kind of like a war with time. If you don't do your treatments at the right time then it's a war with an infection. It is just so sad to me that two little genes can cause so many issues and so many sick people and children. That's fighing CF in my own words. And I find fighting CF is a job I could not do alone with out help from my mom. I thank her allot.

_____________________________________________________________
20/w CF F508 other not known
 
A

Aka2007

New member
What Does Fighting Mean To You?

Fighting CF to me is getting my treatments done. But often I don't get them done and I end up with a bad cough or infection. Fighting CF also to me is keeping my body going even when I am soo hungry I feeling like I am going to die. I get my tube-feeding going and that to me is fighting CF. Fighting CF can also be working with my mind and trying to keep the happness and good things going and trying not to let the saying (I am going to die soon) get to me. Fighting CF is also getting up in the morning to try and just (live) get my meds going and treatments. But with CF I feel I never really (live) I fight to live. Fighting CF also to me is helping new docs and people who don't understand CF. Fighting CF is a very hard job but to me it's kind of like a war with time. If you don't do your treatments at the right time then it's a war with an infection. It is just so sad to me that two little genes can cause so many issues and so many sick people and children. That's fighing CF in my own words. And I find fighting CF is a job I could not do alone with out help from my mom. I thank her allot.

_____________________________________________________________
20/w CF F508 other not known
 
J

JORDYSMOM

New member
To me fighting CF means educating myself more and more each day so that I can help my son stay a step ahead of it. Sometimes that means explaining to him why we do certain treatments, run certain tests and monitor this or that. Also, I think if I am to spread awareness, I should know what I'm talking about. I think spreading awareness increases the chances of raising funds for research. If people don't know about a disease, they certainly won't donate money to it's research.

I bombard my family with information whether they ask for it or not. I forward information from this site to them and all of my friends. I ask them to forward it to others. My hubby and I are asking our families to make a donation to the CFF instead of buying us Christmas gifts this year. Just he and I. I would never take away the kiddo's gifts.

I fight to juggle bills and find enough money to afford the meds my son needs. I fight daily to control my emotions; to not completely lose my mind. I break down from time to time, but then I always think of the people here on this site who have it so much harder than we do, or who have lost their fight.

Stacey
 
J

JORDYSMOM

New member
To me fighting CF means educating myself more and more each day so that I can help my son stay a step ahead of it. Sometimes that means explaining to him why we do certain treatments, run certain tests and monitor this or that. Also, I think if I am to spread awareness, I should know what I'm talking about. I think spreading awareness increases the chances of raising funds for research. If people don't know about a disease, they certainly won't donate money to it's research.

I bombard my family with information whether they ask for it or not. I forward information from this site to them and all of my friends. I ask them to forward it to others. My hubby and I are asking our families to make a donation to the CFF instead of buying us Christmas gifts this year. Just he and I. I would never take away the kiddo's gifts.

I fight to juggle bills and find enough money to afford the meds my son needs. I fight daily to control my emotions; to not completely lose my mind. I break down from time to time, but then I always think of the people here on this site who have it so much harder than we do, or who have lost their fight.

Stacey
 
J

JORDYSMOM

New member
To me fighting CF means educating myself more and more each day so that I can help my son stay a step ahead of it. Sometimes that means explaining to him why we do certain treatments, run certain tests and monitor this or that. Also, I think if I am to spread awareness, I should know what I'm talking about. I think spreading awareness increases the chances of raising funds for research. If people don't know about a disease, they certainly won't donate money to it's research.

I bombard my family with information whether they ask for it or not. I forward information from this site to them and all of my friends. I ask them to forward it to others. My hubby and I are asking our families to make a donation to the CFF instead of buying us Christmas gifts this year. Just he and I. I would never take away the kiddo's gifts.

I fight to juggle bills and find enough money to afford the meds my son needs. I fight daily to control my emotions; to not completely lose my mind. I break down from time to time, but then I always think of the people here on this site who have it so much harder than we do, or who have lost their fight.

Stacey
 
J

JORDYSMOM

New member
To me fighting CF means educating myself more and more each day so that I can help my son stay a step ahead of it. Sometimes that means explaining to him why we do certain treatments, run certain tests and monitor this or that. Also, I think if I am to spread awareness, I should know what I'm talking about. I think spreading awareness increases the chances of raising funds for research. If people don't know about a disease, they certainly won't donate money to it's research.

I bombard my family with information whether they ask for it or not. I forward information from this site to them and all of my friends. I ask them to forward it to others. My hubby and I are asking our families to make a donation to the CFF instead of buying us Christmas gifts this year. Just he and I. I would never take away the kiddo's gifts.

I fight to juggle bills and find enough money to afford the meds my son needs. I fight daily to control my emotions; to not completely lose my mind. I break down from time to time, but then I always think of the people here on this site who have it so much harder than we do, or who have lost their fight.

Stacey
 
J

JORDYSMOM

New member
To me fighting CF means educating myself more and more each day so that I can help my son stay a step ahead of it. Sometimes that means explaining to him why we do certain treatments, run certain tests and monitor this or that. Also, I think if I am to spread awareness, I should know what I'm talking about. I think spreading awareness increases the chances of raising funds for research. If people don't know about a disease, they certainly won't donate money to it's research.

I bombard my family with information whether they ask for it or not. I forward information from this site to them and all of my friends. I ask them to forward it to others. My hubby and I are asking our families to make a donation to the CFF instead of buying us Christmas gifts this year. Just he and I. I would never take away the kiddo's gifts.

I fight to juggle bills and find enough money to afford the meds my son needs. I fight daily to control my emotions; to not completely lose my mind. I break down from time to time, but then I always think of the people here on this site who have it so much harder than we do, or who have lost their fight.

Stacey
 
You must log in or register to reply here.
Top