Feeling careless

[marisalynn]

I also understand what you mean. Some of the posts that I read make me feel very careless also. I am not nearly as faithful with my treatments and exercise as I could be, but I feel the same way that I don't want to be spending hours and hours a day doing these things when I could be living my life. I have resigned to the fact that I will probably never be 100% faithful with my regimen, and it is a constant struggle to remember to do everything.
Marisa RN, 22w/CF

 

[marisalynn]

I also understand what you mean. Some of the posts that I read make me feel very careless also. I am not nearly as faithful with my treatments and exercise as I could be, but I feel the same way that I don't want to be spending hours and hours a day doing these things when I could be living my life. I have resigned to the fact that I will probably never be 100% faithful with my regimen, and it is a constant struggle to remember to do everything.
Marisa RN, 22w/CF

 

[marisalynn]

I also understand what you mean. Some of the posts that I read make me feel very careless also. I am not nearly as faithful with my treatments and exercise as I could be, but I feel the same way that I don't want to be spending hours and hours a day doing these things when I could be living my life. I have resigned to the fact that I will probably never be 100% faithful with my regimen, and it is a constant struggle to remember to do everything.
Marisa RN, 22w/CF

 

[marisalynn]

I also understand what you mean. Some of the posts that I read make me feel very careless also. I am not nearly as faithful with my treatments and exercise as I could be, but I feel the same way that I don't want to be spending hours and hours a day doing these things when I could be living my life. I have resigned to the fact that I will probably never be 100% faithful with my regimen, and it is a constant struggle to remember to do everything.
Marisa RN, 22w/CF

 

[marisalynn]

I also understand what you mean. Some of the posts that I read make me feel very careless also. I am not nearly as faithful with my treatments and exercise as I could be, but I feel the same way that I don't want to be spending hours and hours a day doing these things when I could be living my life. I have resigned to the fact that I will probably never be 100% faithful with my regimen, and it is a constant struggle to remember to do everything.
<br />Marisa RN, 22w/CF

 

[saveferris2009]

We have a number of new treatments in the pipeline - not all will get to the market but if one does, it has the potential to dramatically slow the progression of our disease.

But the meds won't take away existing lung damage.

I'm investing time now in hopes that one of these meds works somewhere down the line.

Also, if I do my treatments religiously and clean my nebs daily, exercise, etc, I feel so much better. This improves my quality of life. I'm in the hospital less. That's quality of life. I cough less and I have more energy - that's quality of life.

I try really hard to find short cuts though. Like I use a small countertop dishwasher to sterilize and clean my nebs all in one step (i use the dishwasher only for neb cleaning - nothing else). I use my eFlow to cut down treatment time. I do work or homework while I was in school while I did nebs/vest.

So there are ways, in my experience, to be compliant and not spend 5 hours a day on treatments. My treatments, plus neb washing, is 2 hours a day. (Albuterol, Cromolyn Sodium, Pulmozyme 2x a day, nebbed abx and a Vest). Neb washing takes maybe 3 minutes to put in the dishwasher and 3 minutes to take out.

if i didn't have my shortcuts, i think i would feel like you - overwhelmed by the potential investment in time on a daily basis.

 

[saveferris2009]

We have a number of new treatments in the pipeline - not all will get to the market but if one does, it has the potential to dramatically slow the progression of our disease.

But the meds won't take away existing lung damage.

I'm investing time now in hopes that one of these meds works somewhere down the line.

Also, if I do my treatments religiously and clean my nebs daily, exercise, etc, I feel so much better. This improves my quality of life. I'm in the hospital less. That's quality of life. I cough less and I have more energy - that's quality of life.

I try really hard to find short cuts though. Like I use a small countertop dishwasher to sterilize and clean my nebs all in one step (i use the dishwasher only for neb cleaning - nothing else). I use my eFlow to cut down treatment time. I do work or homework while I was in school while I did nebs/vest.

So there are ways, in my experience, to be compliant and not spend 5 hours a day on treatments. My treatments, plus neb washing, is 2 hours a day. (Albuterol, Cromolyn Sodium, Pulmozyme 2x a day, nebbed abx and a Vest). Neb washing takes maybe 3 minutes to put in the dishwasher and 3 minutes to take out.

if i didn't have my shortcuts, i think i would feel like you - overwhelmed by the potential investment in time on a daily basis.

 

[saveferris2009]

We have a number of new treatments in the pipeline - not all will get to the market but if one does, it has the potential to dramatically slow the progression of our disease.

But the meds won't take away existing lung damage.

I'm investing time now in hopes that one of these meds works somewhere down the line.

Also, if I do my treatments religiously and clean my nebs daily, exercise, etc, I feel so much better. This improves my quality of life. I'm in the hospital less. That's quality of life. I cough less and I have more energy - that's quality of life.

I try really hard to find short cuts though. Like I use a small countertop dishwasher to sterilize and clean my nebs all in one step (i use the dishwasher only for neb cleaning - nothing else). I use my eFlow to cut down treatment time. I do work or homework while I was in school while I did nebs/vest.

So there are ways, in my experience, to be compliant and not spend 5 hours a day on treatments. My treatments, plus neb washing, is 2 hours a day. (Albuterol, Cromolyn Sodium, Pulmozyme 2x a day, nebbed abx and a Vest). Neb washing takes maybe 3 minutes to put in the dishwasher and 3 minutes to take out.

if i didn't have my shortcuts, i think i would feel like you - overwhelmed by the potential investment in time on a daily basis.

 

[saveferris2009]

We have a number of new treatments in the pipeline - not all will get to the market but if one does, it has the potential to dramatically slow the progression of our disease.

But the meds won't take away existing lung damage.

I'm investing time now in hopes that one of these meds works somewhere down the line.

Also, if I do my treatments religiously and clean my nebs daily, exercise, etc, I feel so much better. This improves my quality of life. I'm in the hospital less. That's quality of life. I cough less and I have more energy - that's quality of life.

I try really hard to find short cuts though. Like I use a small countertop dishwasher to sterilize and clean my nebs all in one step (i use the dishwasher only for neb cleaning - nothing else). I use my eFlow to cut down treatment time. I do work or homework while I was in school while I did nebs/vest.

So there are ways, in my experience, to be compliant and not spend 5 hours a day on treatments. My treatments, plus neb washing, is 2 hours a day. (Albuterol, Cromolyn Sodium, Pulmozyme 2x a day, nebbed abx and a Vest). Neb washing takes maybe 3 minutes to put in the dishwasher and 3 minutes to take out.

if i didn't have my shortcuts, i think i would feel like you - overwhelmed by the potential investment in time on a daily basis.

 

[saveferris2009]

We have a number of new treatments in the pipeline - not all will get to the market but if one does, it has the potential to dramatically slow the progression of our disease.
<br />
<br />But the meds won't take away existing lung damage.
<br />
<br />I'm investing time now in hopes that one of these meds works somewhere down the line.
<br />
<br />Also, if I do my treatments religiously and clean my nebs daily, exercise, etc, I feel so much better. This improves my quality of life. I'm in the hospital less. That's quality of life. I cough less and I have more energy - that's quality of life.
<br />
<br />I try really hard to find short cuts though. Like I use a small countertop dishwasher to sterilize and clean my nebs all in one step (i use the dishwasher only for neb cleaning - nothing else). I use my eFlow to cut down treatment time. I do work or homework while I was in school while I did nebs/vest.
<br />
<br />So there are ways, in my experience, to be compliant and not spend 5 hours a day on treatments. My treatments, plus neb washing, is 2 hours a day. (Albuterol, Cromolyn Sodium, Pulmozyme 2x a day, nebbed abx and a Vest). Neb washing takes maybe 3 minutes to put in the dishwasher and 3 minutes to take out.
<br />
<br />if i didn't have my shortcuts, i think i would feel like you - overwhelmed by the potential investment in time on a daily basis.

 

[JazzysMom]

I UNDERSTAND!

I also think....mind you IMHO tho and please dont beat me up about what I am about to say......

The longer you deal with things, the older you get the more you just tired of it.

You get tired of being the "good patient, the compliant one, the one holding out for that med or cure while trying to keep progression at bay"

I dont think its bad to feel this way. I also think its great for other CFers to know that in REALITY not everyone does everything everyday even knowing the potential results.

I do believe in quality versus quantity, but I also take one day at a time because.....well just because!

 

[JazzysMom]

I UNDERSTAND!

I also think....mind you IMHO tho and please dont beat me up about what I am about to say......

The longer you deal with things, the older you get the more you just tired of it.

You get tired of being the "good patient, the compliant one, the one holding out for that med or cure while trying to keep progression at bay"

I dont think its bad to feel this way. I also think its great for other CFers to know that in REALITY not everyone does everything everyday even knowing the potential results.

I do believe in quality versus quantity, but I also take one day at a time because.....well just because!

 

[JazzysMom]

I UNDERSTAND!

I also think....mind you IMHO tho and please dont beat me up about what I am about to say......

The longer you deal with things, the older you get the more you just tired of it.

You get tired of being the "good patient, the compliant one, the one holding out for that med or cure while trying to keep progression at bay"

I dont think its bad to feel this way. I also think its great for other CFers to know that in REALITY not everyone does everything everyday even knowing the potential results.

I do believe in quality versus quantity, but I also take one day at a time because.....well just because!

 

[JazzysMom]

I UNDERSTAND!

I also think....mind you IMHO tho and please dont beat me up about what I am about to say......

The longer you deal with things, the older you get the more you just tired of it.

You get tired of being the "good patient, the compliant one, the one holding out for that med or cure while trying to keep progression at bay"

I dont think its bad to feel this way. I also think its great for other CFers to know that in REALITY not everyone does everything everyday even knowing the potential results.

I do believe in quality versus quantity, but I also take one day at a time because.....well just because!

 

[JazzysMom]

I UNDERSTAND!
<br />
<br />I also think....mind you IMHO tho and please dont beat me up about what I am about to say......
<br />
<br />The longer you deal with things, the older you get the more you just tired of it.
<br />
<br />You get tired of being the "good patient, the compliant one, the one holding out for that med or cure while trying to keep progression at bay"
<br />
<br />I dont think its bad to feel this way. I also think its great for other CFers to know that in REALITY not everyone does everything everyday even knowing the potential results.
<br />
<br />I do believe in quality versus quantity, but I also take one day at a time because.....well just because!
<br />
<br />

 

[Ratatosk]

I just try to do the best I can -- streamline care, cleaning, treatments as best we can. I was feeling bad this weekend because I noticed giant dust bunnies up on our shelves. but did I stop and dust everything -- no... The shower thing made me pause briefly -- wondering what I may have exposed DS to in the past, but the one article indicated shower filters should be change WEEKLY? DS mainly takes baths right now... Sits in his own filth.. Sigh!

I hear of parents taking their kids out of school and being homebound for most of the school year once a flu case hits. There was something I read yesterday about having it in the 504 that their child has to come in from the rain. Am I a terrible mother in that I let DS run around in the rain...

 

[Ratatosk]

I just try to do the best I can -- streamline care, cleaning, treatments as best we can. I was feeling bad this weekend because I noticed giant dust bunnies up on our shelves. but did I stop and dust everything -- no... The shower thing made me pause briefly -- wondering what I may have exposed DS to in the past, but the one article indicated shower filters should be change WEEKLY? DS mainly takes baths right now... Sits in his own filth.. Sigh!

I hear of parents taking their kids out of school and being homebound for most of the school year once a flu case hits. There was something I read yesterday about having it in the 504 that their child has to come in from the rain. Am I a terrible mother in that I let DS run around in the rain...

 

[Ratatosk]

I just try to do the best I can -- streamline care, cleaning, treatments as best we can. I was feeling bad this weekend because I noticed giant dust bunnies up on our shelves. but did I stop and dust everything -- no... The shower thing made me pause briefly -- wondering what I may have exposed DS to in the past, but the one article indicated shower filters should be change WEEKLY? DS mainly takes baths right now... Sits in his own filth.. Sigh!

I hear of parents taking their kids out of school and being homebound for most of the school year once a flu case hits. There was something I read yesterday about having it in the 504 that their child has to come in from the rain. Am I a terrible mother in that I let DS run around in the rain...

 

[Ratatosk]

I just try to do the best I can -- streamline care, cleaning, treatments as best we can. I was feeling bad this weekend because I noticed giant dust bunnies up on our shelves. but did I stop and dust everything -- no... The shower thing made me pause briefly -- wondering what I may have exposed DS to in the past, but the one article indicated shower filters should be change WEEKLY? DS mainly takes baths right now... Sits in his own filth.. Sigh!

I hear of parents taking their kids out of school and being homebound for most of the school year once a flu case hits. There was something I read yesterday about having it in the 504 that their child has to come in from the rain. Am I a terrible mother in that I let DS run around in the rain...

 

[Ratatosk]

I just try to do the best I can -- streamline care, cleaning, treatments as best we can. I was feeling bad this weekend because I noticed giant dust bunnies up on our shelves. but did I stop and dust everything -- no... The shower thing made me pause briefly -- wondering what I may have exposed DS to in the past, but the one article indicated shower filters should be change WEEKLY? DS mainly takes baths right now... Sits in his own filth.. Sigh!
<br />
<br />I hear of parents taking their kids out of school and being homebound for most of the school year once a flu case hits. There was something I read yesterday about having it in the 504 that their child has to come in from the rain. Am I a terrible mother in that I let DS run around in the rain...