I'm so scared

[welshwitch]

I definitely agree with a lot of what has been said. There IS no way to quantify that eternal question "How long will I live?" I have been struggling w. that question for TOOOOO long....

One thing that has really helped me is gaining some sort of control over my CF. I really didn't start to engage in any of the real treatments besides pills until last year. I found out that the treatments really do actually work and that I have some sort of power over this. It was really great to do that and to stop feeling the helpless "there is nothing I can do, this disease will get me eventually anyway so there is no point."

The main idea is, there is ALWAYS something you can be doing. I feel healthier than ever and I know deep in my heart that I have quite a few years in front of me before things start to go downhill, if they ever do. My Dr. made the point that if things continue to go this well, I could have a normal lifespan. However, this is something that I refuse to take as a ticket to normalcy and that I don't have to earn it. There is NO WAY I can continue at this rate w. out continuing to work my butt off.

At the same time, I need to respect CF and the fact that a lot of people (including some that I knew) didn't make it this long. Some kids I know w.CF that I used to play with died in their early 20s. So I know that no matter what attitude you choose to take, the harsh reality, the "numbers" as NYCLawGirl said, are true. As much as I would like to think, it isn't just for fundraising.

It is about choice. You can choose to live your life optimistically, or you can choose to live it in fear. I am slowly learning to get rid of the fear and face whatever it is I have to face. Your daughter will to. Much luck to both of you.

 

[welshwitch]

I definitely agree with a lot of what has been said. There IS no way to quantify that eternal question "How long will I live?" I have been struggling w. that question for TOOOOO long....

One thing that has really helped me is gaining some sort of control over my CF. I really didn't start to engage in any of the real treatments besides pills until last year. I found out that the treatments really do actually work and that I have some sort of power over this. It was really great to do that and to stop feeling the helpless "there is nothing I can do, this disease will get me eventually anyway so there is no point."

The main idea is, there is ALWAYS something you can be doing. I feel healthier than ever and I know deep in my heart that I have quite a few years in front of me before things start to go downhill, if they ever do. My Dr. made the point that if things continue to go this well, I could have a normal lifespan. However, this is something that I refuse to take as a ticket to normalcy and that I don't have to earn it. There is NO WAY I can continue at this rate w. out continuing to work my butt off.

At the same time, I need to respect CF and the fact that a lot of people (including some that I knew) didn't make it this long. Some kids I know w.CF that I used to play with died in their early 20s. So I know that no matter what attitude you choose to take, the harsh reality, the "numbers" as NYCLawGirl said, are true. As much as I would like to think, it isn't just for fundraising.

It is about choice. You can choose to live your life optimistically, or you can choose to live it in fear. I am slowly learning to get rid of the fear and face whatever it is I have to face. Your daughter will to. Much luck to both of you.

 

[welshwitch]

I definitely agree with a lot of what has been said. There IS no way to quantify that eternal question "How long will I live?" I have been struggling w. that question for TOOOOO long....

One thing that has really helped me is gaining some sort of control over my CF. I really didn't start to engage in any of the real treatments besides pills until last year. I found out that the treatments really do actually work and that I have some sort of power over this. It was really great to do that and to stop feeling the helpless "there is nothing I can do, this disease will get me eventually anyway so there is no point."

The main idea is, there is ALWAYS something you can be doing. I feel healthier than ever and I know deep in my heart that I have quite a few years in front of me before things start to go downhill, if they ever do. My Dr. made the point that if things continue to go this well, I could have a normal lifespan. However, this is something that I refuse to take as a ticket to normalcy and that I don't have to earn it. There is NO WAY I can continue at this rate w. out continuing to work my butt off.

At the same time, I need to respect CF and the fact that a lot of people (including some that I knew) didn't make it this long. Some kids I know w.CF that I used to play with died in their early 20s. So I know that no matter what attitude you choose to take, the harsh reality, the "numbers" as NYCLawGirl said, are true. As much as I would like to think, it isn't just for fundraising.

It is about choice. You can choose to live your life optimistically, or you can choose to live it in fear. I am slowly learning to get rid of the fear and face whatever it is I have to face. Your daughter will to. Much luck to both of you.

 

[welshwitch]

I definitely agree with a lot of what has been said. There IS no way to quantify that eternal question "How long will I live?" I have been struggling w. that question for TOOOOO long....

One thing that has really helped me is gaining some sort of control over my CF. I really didn't start to engage in any of the real treatments besides pills until last year. I found out that the treatments really do actually work and that I have some sort of power over this. It was really great to do that and to stop feeling the helpless "there is nothing I can do, this disease will get me eventually anyway so there is no point."

The main idea is, there is ALWAYS something you can be doing. I feel healthier than ever and I know deep in my heart that I have quite a few years in front of me before things start to go downhill, if they ever do. My Dr. made the point that if things continue to go this well, I could have a normal lifespan. However, this is something that I refuse to take as a ticket to normalcy and that I don't have to earn it. There is NO WAY I can continue at this rate w. out continuing to work my butt off.

At the same time, I need to respect CF and the fact that a lot of people (including some that I knew) didn't make it this long. Some kids I know w.CF that I used to play with died in their early 20s. So I know that no matter what attitude you choose to take, the harsh reality, the "numbers" as NYCLawGirl said, are true. As much as I would like to think, it isn't just for fundraising.

It is about choice. You can choose to live your life optimistically, or you can choose to live it in fear. I am slowly learning to get rid of the fear and face whatever it is I have to face. Your daughter will to. Much luck to both of you.

 

[welshwitch]

I definitely agree with a lot of what has been said. There IS no way to quantify that eternal question "How long will I live?" I have been struggling w. that question for TOOOOO long....
<br />
<br />One thing that has really helped me is gaining some sort of control over my CF. I really didn't start to engage in any of the real treatments besides pills until last year. I found out that the treatments really do actually work and that I have some sort of power over this. It was really great to do that and to stop feeling the helpless "there is nothing I can do, this disease will get me eventually anyway so there is no point."
<br />
<br />The main idea is, there is ALWAYS something you can be doing. I feel healthier than ever and I know deep in my heart that I have quite a few years in front of me before things start to go downhill, if they ever do. My Dr. made the point that if things continue to go this well, I could have a normal lifespan. However, this is something that I refuse to take as a ticket to normalcy and that I don't have to earn it. There is NO WAY I can continue at this rate w. out continuing to work my butt off.
<br />
<br />At the same time, I need to respect CF and the fact that a lot of people (including some that I knew) didn't make it this long. Some kids I know w.CF that I used to play with died in their early 20s. So I know that no matter what attitude you choose to take, the harsh reality, the "numbers" as NYCLawGirl said, are true. As much as I would like to think, it isn't just for fundraising.
<br />
<br />It is about choice. You can choose to live your life optimistically, or you can choose to live it in fear. I am slowly learning to get rid of the fear and face whatever it is I have to face. Your daughter will to. Much luck to both of you.
<br />
<br />

 

[dswilson67]

I really can't add too much, but the last time Dan was in the hosp, when we were being discharged the doc said, if he does all the things he is suppose to be doing, treatments, vitamins, and such he should live a long life, long enough to put me in the rest home. I'm only 40 now, don't expect to go there for a very long time.

 

[dswilson67]

I really can't add too much, but the last time Dan was in the hosp, when we were being discharged the doc said, if he does all the things he is suppose to be doing, treatments, vitamins, and such he should live a long life, long enough to put me in the rest home. I'm only 40 now, don't expect to go there for a very long time.

 

[dswilson67]

I really can't add too much, but the last time Dan was in the hosp, when we were being discharged the doc said, if he does all the things he is suppose to be doing, treatments, vitamins, and such he should live a long life, long enough to put me in the rest home. I'm only 40 now, don't expect to go there for a very long time.

 

[dswilson67]

I really can't add too much, but the last time Dan was in the hosp, when we were being discharged the doc said, if he does all the things he is suppose to be doing, treatments, vitamins, and such he should live a long life, long enough to put me in the rest home. I'm only 40 now, don't expect to go there for a very long time.

 

[dswilson67]

I really can't add too much, but the last time Dan was in the hosp, when we were being discharged the doc said, if he does all the things he is suppose to be doing, treatments, vitamins, and such he should live a long life, long enough to put me in the rest home. I'm only 40 now, don't expect to go there for a very long time.

 

[beleache]

Hey Katie,

I dont have much to add either. You got so many good replies..

Like everyone said, enjoy your little Ellie <img src="i/expressions/face-icon-small-smile.gif" border="0">

Learn all that you can for her care and to help her make the right decisions when it comes time for her to take control of her disease..

After i got dxd, ( at 44 i was already past the average life expectancy) I pretty much had it in my head that i would be dying at any time..Went on for a few years w/ that hanging over my head. Went into renal failure due to meds (if you want to know that whole story PM me) and really thought i was dying , this time for sure.. During the kidney failure i had a near death experience and became closer to God.. That in itself has been a tremendous help to me...

What im trying to say is i was wasting so much precious time worry and not really enjoy MY life to the best of my abilities..

Im not saying i dont worry, i certainly do. I just think i am in so much better control of my situation...

Take care , {{{{{Hugs}}}}} to you and God Bless <img src="i/expressions/praying.gif" border="0"> ~ <img src="i/expressions/heart.gif" border="0"> joni

 

[beleache]

Hey Katie,

I dont have much to add either. You got so many good replies..

Like everyone said, enjoy your little Ellie <img src="i/expressions/face-icon-small-smile.gif" border="0">

Learn all that you can for her care and to help her make the right decisions when it comes time for her to take control of her disease..

After i got dxd, ( at 44 i was already past the average life expectancy) I pretty much had it in my head that i would be dying at any time..Went on for a few years w/ that hanging over my head. Went into renal failure due to meds (if you want to know that whole story PM me) and really thought i was dying , this time for sure.. During the kidney failure i had a near death experience and became closer to God.. That in itself has been a tremendous help to me...

What im trying to say is i was wasting so much precious time worry and not really enjoy MY life to the best of my abilities..

Im not saying i dont worry, i certainly do. I just think i am in so much better control of my situation...

Take care , {{{{{Hugs}}}}} to you and God Bless <img src="i/expressions/praying.gif" border="0"> ~ <img src="i/expressions/heart.gif" border="0"> joni

 

[beleache]

Hey Katie,

I dont have much to add either. You got so many good replies..

Like everyone said, enjoy your little Ellie <img src="i/expressions/face-icon-small-smile.gif" border="0">

Learn all that you can for her care and to help her make the right decisions when it comes time for her to take control of her disease..

After i got dxd, ( at 44 i was already past the average life expectancy) I pretty much had it in my head that i would be dying at any time..Went on for a few years w/ that hanging over my head. Went into renal failure due to meds (if you want to know that whole story PM me) and really thought i was dying , this time for sure.. During the kidney failure i had a near death experience and became closer to God.. That in itself has been a tremendous help to me...

What im trying to say is i was wasting so much precious time worry and not really enjoy MY life to the best of my abilities..

Im not saying i dont worry, i certainly do. I just think i am in so much better control of my situation...

Take care , {{{{{Hugs}}}}} to you and God Bless <img src="i/expressions/praying.gif" border="0"> ~ <img src="i/expressions/heart.gif" border="0"> joni

 

[beleache]

Hey Katie,

I dont have much to add either. You got so many good replies..

Like everyone said, enjoy your little Ellie <img src="i/expressions/face-icon-small-smile.gif" border="0">

Learn all that you can for her care and to help her make the right decisions when it comes time for her to take control of her disease..

After i got dxd, ( at 44 i was already past the average life expectancy) I pretty much had it in my head that i would be dying at any time..Went on for a few years w/ that hanging over my head. Went into renal failure due to meds (if you want to know that whole story PM me) and really thought i was dying , this time for sure.. During the kidney failure i had a near death experience and became closer to God.. That in itself has been a tremendous help to me...

What im trying to say is i was wasting so much precious time worry and not really enjoy MY life to the best of my abilities..

Im not saying i dont worry, i certainly do. I just think i am in so much better control of my situation...

Take care , {{{{{Hugs}}}}} to you and God Bless <img src="i/expressions/praying.gif" border="0"> ~ <img src="i/expressions/heart.gif" border="0"> joni

 

[beleache]

Hey Katie,
<br />
<br /> I dont have much to add either. You got so many good replies..
<br />
<br />Like everyone said, enjoy your little Ellie <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br /> Learn all that you can for her care and to help her make the right decisions when it comes time for her to take control of her disease..
<br />
<br />After i got dxd, ( at 44 i was already past the average life expectancy) I pretty much had it in my head that i would be dying at any time..Went on for a few years w/ that hanging over my head. Went into renal failure due to meds (if you want to know that whole story PM me) and really thought i was dying , this time for sure.. During the kidney failure i had a near death experience and became closer to God.. That in itself has been a tremendous help to me...
<br />
<br />What im trying to say is i was wasting so much precious time worry and not really enjoy MY life to the best of my abilities..
<br />
<br />Im not saying i dont worry, i certainly do. I just think i am in so much better control of my situation...
<br />
<br />Take care , {{{{{Hugs}}}}} to you and God Bless <img src="i/expressions/praying.gif" border="0"> ~ <img src="i/expressions/heart.gif" border="0"> joni

 

[lovingBenandCambree]

I didnt read all of the responses, but just wanted to say that i have an incredible life. I am 28 yrs old I have my bachelors degree in Psychology, a beautiful 4 yr old daughter and an amazing husband of 6 years. We are truly blessed. Yes CF has definitley put obstacles in our way, but i can't express the joy that I have had to live most<img src="i/expressions/face-icon-small-smile.gif" border="0"> days to the fullest to understand the true purpose of life and to make the most of what I have been given. never tell your daughter that she can't do something because she has CF, i.e. dance, play sports, whatever. Although that did add fuel to the fire with me. I know that life would be great without CF, but I would have missed out on the lessons I have learned and the wisdom I have gained. Good luck, I pray that your Ellie has as an amazing life as I have.

 

[lovingBenandCambree]

I didnt read all of the responses, but just wanted to say that i have an incredible life. I am 28 yrs old I have my bachelors degree in Psychology, a beautiful 4 yr old daughter and an amazing husband of 6 years. We are truly blessed. Yes CF has definitley put obstacles in our way, but i can't express the joy that I have had to live most<img src="i/expressions/face-icon-small-smile.gif" border="0"> days to the fullest to understand the true purpose of life and to make the most of what I have been given. never tell your daughter that she can't do something because she has CF, i.e. dance, play sports, whatever. Although that did add fuel to the fire with me. I know that life would be great without CF, but I would have missed out on the lessons I have learned and the wisdom I have gained. Good luck, I pray that your Ellie has as an amazing life as I have.

 

[lovingBenandCambree]

I didnt read all of the responses, but just wanted to say that i have an incredible life. I am 28 yrs old I have my bachelors degree in Psychology, a beautiful 4 yr old daughter and an amazing husband of 6 years. We are truly blessed. Yes CF has definitley put obstacles in our way, but i can't express the joy that I have had to live most<img src="i/expressions/face-icon-small-smile.gif" border="0"> days to the fullest to understand the true purpose of life and to make the most of what I have been given. never tell your daughter that she can't do something because she has CF, i.e. dance, play sports, whatever. Although that did add fuel to the fire with me. I know that life would be great without CF, but I would have missed out on the lessons I have learned and the wisdom I have gained. Good luck, I pray that your Ellie has as an amazing life as I have.

 

[lovingBenandCambree]

I didnt read all of the responses, but just wanted to say that i have an incredible life. I am 28 yrs old I have my bachelors degree in Psychology, a beautiful 4 yr old daughter and an amazing husband of 6 years. We are truly blessed. Yes CF has definitley put obstacles in our way, but i can't express the joy that I have had to live most<img src="i/expressions/face-icon-small-smile.gif" border="0"> days to the fullest to understand the true purpose of life and to make the most of what I have been given. never tell your daughter that she can't do something because she has CF, i.e. dance, play sports, whatever. Although that did add fuel to the fire with me. I know that life would be great without CF, but I would have missed out on the lessons I have learned and the wisdom I have gained. Good luck, I pray that your Ellie has as an amazing life as I have.

 

[lovingBenandCambree]

I didnt read all of the responses, but just wanted to say that i have an incredible life. I am 28 yrs old I have my bachelors degree in Psychology, a beautiful 4 yr old daughter and an amazing husband of 6 years. We are truly blessed. Yes CF has definitley put obstacles in our way, but i can't express the joy that I have had to live most<img src="i/expressions/face-icon-small-smile.gif" border="0"> days to the fullest to understand the true purpose of life and to make the most of what I have been given. never tell your daughter that she can't do something because she has CF, i.e. dance, play sports, whatever. Although that did add fuel to the fire with me. I know that life would be great without CF, but I would have missed out on the lessons I have learned and the wisdom I have gained. Good luck, I pray that your Ellie has as an amazing life as I have.