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Feeling careless

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pegsoninthepresent

New member
remember for all the people who posts they are doing everything right ....remember they once too felt like you and thought they did everything wrong and thats wat got them into gear
 
P

pegsoninthepresent

New member
remember for all the people who posts they are doing everything right ....remember they once too felt like you and thought they did everything wrong and thats wat got them into gear
 
P

pegsoninthepresent

New member
remember for all the people who posts they are doing everything right ....remember they once too felt like you and thought they did everything wrong and thats wat got them into gear
 
P

pegsoninthepresent

New member
remember for all the people who posts they are doing everything right ....remember they once too felt like you and thought they did everything wrong and thats wat got them into gear
 
P

pegsoninthepresent

New member
remember for all the people who posts they are doing everything right ....remember they once too felt like you and thought they did everything wrong and thats wat got them into gear
 
C

cfpatience

Guest
Hi. My name is Mary. Mom of a 10 yr old with CF. I just learned about this web site for the first time a few days back. I am just in amazement as I read these posts. It makes me feel really "out of it". Some of the meds mentioned I have never heard of...I don't even know what is wrong with a hot shower, or working in the garden...or lot's of stuff here.

My son was diagnoised at age 3 mo. FTT. At first I was not very good at doing the manual PT, and as an infant he faught the mask a lot. His health was not the best back then. But as he tolerated the mask and we got the vest his health has been great. I was always faithful not to miss a treatment or meds for the first 8 years of his life.

I am still faithful...but not as...in that sometimes if we have traveled and come home really late...I don't keep him up till wee hours to give him his pm treatment. If we are out to eat and I forgot the adek...I don't run home and get it...usually always on Christmas night he skips his treatment.

Once I even asked him would he like to see how it is to get up in the morning if he didn't have cf and he was all for that. So we get up (late) have breakfast and have a great day. Treatments resumed as usual in the eve. But that special morning meant a lot to him.

We are very rigid about hand washing, but I gave up long ago to be too strict that life was unjoyful. Out doc once said...the more germs he is exposed to the more immunity he will build up. The doc also said if he wanted to have a sleep over (once in a while) at a friends house, it wouldn't be a big deal to skip that mornings treatment. He said the kids should have some fun sometimes.

The way I feel is be faithful most all the time...and sometimes have a little fun. I am talking about once in a while... not once a month or once a week.

All that said....my son probably does not have as bad of health as many of you. But a lot of time to have good health you have to have fun...laugh..live...have happiness and peace within. This is what works for us...but it may not be what works for the next person.
 
C

cfpatience

Guest
Hi. My name is Mary. Mom of a 10 yr old with CF. I just learned about this web site for the first time a few days back. I am just in amazement as I read these posts. It makes me feel really "out of it". Some of the meds mentioned I have never heard of...I don't even know what is wrong with a hot shower, or working in the garden...or lot's of stuff here.

My son was diagnoised at age 3 mo. FTT. At first I was not very good at doing the manual PT, and as an infant he faught the mask a lot. His health was not the best back then. But as he tolerated the mask and we got the vest his health has been great. I was always faithful not to miss a treatment or meds for the first 8 years of his life.

I am still faithful...but not as...in that sometimes if we have traveled and come home really late...I don't keep him up till wee hours to give him his pm treatment. If we are out to eat and I forgot the adek...I don't run home and get it...usually always on Christmas night he skips his treatment.

Once I even asked him would he like to see how it is to get up in the morning if he didn't have cf and he was all for that. So we get up (late) have breakfast and have a great day. Treatments resumed as usual in the eve. But that special morning meant a lot to him.

We are very rigid about hand washing, but I gave up long ago to be too strict that life was unjoyful. Out doc once said...the more germs he is exposed to the more immunity he will build up. The doc also said if he wanted to have a sleep over (once in a while) at a friends house, it wouldn't be a big deal to skip that mornings treatment. He said the kids should have some fun sometimes.

The way I feel is be faithful most all the time...and sometimes have a little fun. I am talking about once in a while... not once a month or once a week.

All that said....my son probably does not have as bad of health as many of you. But a lot of time to have good health you have to have fun...laugh..live...have happiness and peace within. This is what works for us...but it may not be what works for the next person.
 
C

cfpatience

Guest
Hi. My name is Mary. Mom of a 10 yr old with CF. I just learned about this web site for the first time a few days back. I am just in amazement as I read these posts. It makes me feel really "out of it". Some of the meds mentioned I have never heard of...I don't even know what is wrong with a hot shower, or working in the garden...or lot's of stuff here.

My son was diagnoised at age 3 mo. FTT. At first I was not very good at doing the manual PT, and as an infant he faught the mask a lot. His health was not the best back then. But as he tolerated the mask and we got the vest his health has been great. I was always faithful not to miss a treatment or meds for the first 8 years of his life.

I am still faithful...but not as...in that sometimes if we have traveled and come home really late...I don't keep him up till wee hours to give him his pm treatment. If we are out to eat and I forgot the adek...I don't run home and get it...usually always on Christmas night he skips his treatment.

Once I even asked him would he like to see how it is to get up in the morning if he didn't have cf and he was all for that. So we get up (late) have breakfast and have a great day. Treatments resumed as usual in the eve. But that special morning meant a lot to him.

We are very rigid about hand washing, but I gave up long ago to be too strict that life was unjoyful. Out doc once said...the more germs he is exposed to the more immunity he will build up. The doc also said if he wanted to have a sleep over (once in a while) at a friends house, it wouldn't be a big deal to skip that mornings treatment. He said the kids should have some fun sometimes.

The way I feel is be faithful most all the time...and sometimes have a little fun. I am talking about once in a while... not once a month or once a week.

All that said....my son probably does not have as bad of health as many of you. But a lot of time to have good health you have to have fun...laugh..live...have happiness and peace within. This is what works for us...but it may not be what works for the next person.
 
C

cfpatience

Guest
Hi. My name is Mary. Mom of a 10 yr old with CF. I just learned about this web site for the first time a few days back. I am just in amazement as I read these posts. It makes me feel really "out of it". Some of the meds mentioned I have never heard of...I don't even know what is wrong with a hot shower, or working in the garden...or lot's of stuff here.

My son was diagnoised at age 3 mo. FTT. At first I was not very good at doing the manual PT, and as an infant he faught the mask a lot. His health was not the best back then. But as he tolerated the mask and we got the vest his health has been great. I was always faithful not to miss a treatment or meds for the first 8 years of his life.

I am still faithful...but not as...in that sometimes if we have traveled and come home really late...I don't keep him up till wee hours to give him his pm treatment. If we are out to eat and I forgot the adek...I don't run home and get it...usually always on Christmas night he skips his treatment.

Once I even asked him would he like to see how it is to get up in the morning if he didn't have cf and he was all for that. So we get up (late) have breakfast and have a great day. Treatments resumed as usual in the eve. But that special morning meant a lot to him.

We are very rigid about hand washing, but I gave up long ago to be too strict that life was unjoyful. Out doc once said...the more germs he is exposed to the more immunity he will build up. The doc also said if he wanted to have a sleep over (once in a while) at a friends house, it wouldn't be a big deal to skip that mornings treatment. He said the kids should have some fun sometimes.

The way I feel is be faithful most all the time...and sometimes have a little fun. I am talking about once in a while... not once a month or once a week.

All that said....my son probably does not have as bad of health as many of you. But a lot of time to have good health you have to have fun...laugh..live...have happiness and peace within. This is what works for us...but it may not be what works for the next person.
 
C

cfpatience

Guest
Hi. My name is Mary. Mom of a 10 yr old with CF. I just learned about this web site for the first time a few days back. I am just in amazement as I read these posts. It makes me feel really "out of it". Some of the meds mentioned I have never heard of...I don't even know what is wrong with a hot shower, or working in the garden...or lot's of stuff here.
<br />
<br />My son was diagnoised at age 3 mo. FTT. At first I was not very good at doing the manual PT, and as an infant he faught the mask a lot. His health was not the best back then. But as he tolerated the mask and we got the vest his health has been great. I was always faithful not to miss a treatment or meds for the first 8 years of his life.
<br />
<br />I am still faithful...but not as...in that sometimes if we have traveled and come home really late...I don't keep him up till wee hours to give him his pm treatment. If we are out to eat and I forgot the adek...I don't run home and get it...usually always on Christmas night he skips his treatment.
<br />
<br />Once I even asked him would he like to see how it is to get up in the morning if he didn't have cf and he was all for that. So we get up (late) have breakfast and have a great day. Treatments resumed as usual in the eve. But that special morning meant a lot to him.
<br />
<br />We are very rigid about hand washing, but I gave up long ago to be too strict that life was unjoyful. Out doc once said...the more germs he is exposed to the more immunity he will build up. The doc also said if he wanted to have a sleep over (once in a while) at a friends house, it wouldn't be a big deal to skip that mornings treatment. He said the kids should have some fun sometimes.
<br />
<br />The way I feel is be faithful most all the time...and sometimes have a little fun. I am talking about once in a while... not once a month or once a week.
<br />
<br />All that said....my son probably does not have as bad of health as many of you. But a lot of time to have good health you have to have fun...laugh..live...have happiness and peace within. This is what works for us...but it may not be what works for the next person.
<br />
<br />
 
K

Keepercjr

Guest
Jessica I feel the SAME WAY! And at the moment you are even doing more than I am. I have to remember I have a life to live and also it just isn't possible for me to spend hours a day doing treatments w/ 2 children. Getting to the gym right now isn't that much of a possibility either till baby is a little older.

When we were little and my brother was in the hospital (I wasn't hospitalized till I was 16 except once as a baby) our CF doctor made a point of letting my brother skip an IV dose so he could make it to school activities - even encouraging him to do so.

There has to be a balance. Some days the balance is tipped towards treatments, and some days the balance is tipped towards "being normal". And what Melissa said - I'm tired( !!) of doing treatments, pills, inhalers. I'm grateful for them but that doesn't mean I don't get to be tired of doing all that just to keep a baseline.

I try my best. That is all I can do. I garden, take warm showers, have 2 kids, play in the rain, travel abroad, send my son to preschool etc. I'm not sacrificing quality for a the chance at a little more quantity (and so far so good!).
 
K

Keepercjr

Guest
Jessica I feel the SAME WAY! And at the moment you are even doing more than I am. I have to remember I have a life to live and also it just isn't possible for me to spend hours a day doing treatments w/ 2 children. Getting to the gym right now isn't that much of a possibility either till baby is a little older.

When we were little and my brother was in the hospital (I wasn't hospitalized till I was 16 except once as a baby) our CF doctor made a point of letting my brother skip an IV dose so he could make it to school activities - even encouraging him to do so.

There has to be a balance. Some days the balance is tipped towards treatments, and some days the balance is tipped towards "being normal". And what Melissa said - I'm tired( !!) of doing treatments, pills, inhalers. I'm grateful for them but that doesn't mean I don't get to be tired of doing all that just to keep a baseline.

I try my best. That is all I can do. I garden, take warm showers, have 2 kids, play in the rain, travel abroad, send my son to preschool etc. I'm not sacrificing quality for a the chance at a little more quantity (and so far so good!).
 
K

Keepercjr

Guest
Jessica I feel the SAME WAY! And at the moment you are even doing more than I am. I have to remember I have a life to live and also it just isn't possible for me to spend hours a day doing treatments w/ 2 children. Getting to the gym right now isn't that much of a possibility either till baby is a little older.

When we were little and my brother was in the hospital (I wasn't hospitalized till I was 16 except once as a baby) our CF doctor made a point of letting my brother skip an IV dose so he could make it to school activities - even encouraging him to do so.

There has to be a balance. Some days the balance is tipped towards treatments, and some days the balance is tipped towards "being normal". And what Melissa said - I'm tired( !!) of doing treatments, pills, inhalers. I'm grateful for them but that doesn't mean I don't get to be tired of doing all that just to keep a baseline.

I try my best. That is all I can do. I garden, take warm showers, have 2 kids, play in the rain, travel abroad, send my son to preschool etc. I'm not sacrificing quality for a the chance at a little more quantity (and so far so good!).
 
K

Keepercjr

Guest
Jessica I feel the SAME WAY! And at the moment you are even doing more than I am. I have to remember I have a life to live and also it just isn't possible for me to spend hours a day doing treatments w/ 2 children. Getting to the gym right now isn't that much of a possibility either till baby is a little older.

When we were little and my brother was in the hospital (I wasn't hospitalized till I was 16 except once as a baby) our CF doctor made a point of letting my brother skip an IV dose so he could make it to school activities - even encouraging him to do so.

There has to be a balance. Some days the balance is tipped towards treatments, and some days the balance is tipped towards "being normal". And what Melissa said - I'm tired( !!) of doing treatments, pills, inhalers. I'm grateful for them but that doesn't mean I don't get to be tired of doing all that just to keep a baseline.

I try my best. That is all I can do. I garden, take warm showers, have 2 kids, play in the rain, travel abroad, send my son to preschool etc. I'm not sacrificing quality for a the chance at a little more quantity (and so far so good!).
 
K

Keepercjr

Guest
Jessica I feel the SAME WAY! And at the moment you are even doing more than I am. I have to remember I have a life to live and also it just isn't possible for me to spend hours a day doing treatments w/ 2 children. Getting to the gym right now isn't that much of a possibility either till baby is a little older.
<br />
<br />When we were little and my brother was in the hospital (I wasn't hospitalized till I was 16 except once as a baby) our CF doctor made a point of letting my brother skip an IV dose so he could make it to school activities - even encouraging him to do so.
<br />
<br />There has to be a balance. Some days the balance is tipped towards treatments, and some days the balance is tipped towards "being normal". And what Melissa said - I'm tired( !!) of doing treatments, pills, inhalers. I'm grateful for them but that doesn't mean I don't get to be tired of doing all that just to keep a baseline.
<br />
<br />I try my best. That is all I can do. I garden, take warm showers, have 2 kids, play in the rain, travel abroad, send my son to preschool etc. I'm not sacrificing quality for a the chance at a little more quantity (and so far so good!).
 
J

jbrandonAW

New member
Aww man yall are awesome... Its soo great to know others feel like me (which I guess is the point of this whole post). I have to say until just recently I sucked at doing meds. As of now I am great at taking all of them, the hardest part of finding the time to be on my vest. At bedtime is great -but in the mornings I have an awake toddler. As it is Im not getting enough sleep so to wake up an hour early for the vest is just not happening...sigh...soon I hope.
 
J

jbrandonAW

New member
Aww man yall are awesome... Its soo great to know others feel like me (which I guess is the point of this whole post). I have to say until just recently I sucked at doing meds. As of now I am great at taking all of them, the hardest part of finding the time to be on my vest. At bedtime is great -but in the mornings I have an awake toddler. As it is Im not getting enough sleep so to wake up an hour early for the vest is just not happening...sigh...soon I hope.
 
J

jbrandonAW

New member
Aww man yall are awesome... Its soo great to know others feel like me (which I guess is the point of this whole post). I have to say until just recently I sucked at doing meds. As of now I am great at taking all of them, the hardest part of finding the time to be on my vest. At bedtime is great -but in the mornings I have an awake toddler. As it is Im not getting enough sleep so to wake up an hour early for the vest is just not happening...sigh...soon I hope.
 
J

jbrandonAW

New member
Aww man yall are awesome... Its soo great to know others feel like me (which I guess is the point of this whole post). I have to say until just recently I sucked at doing meds. As of now I am great at taking all of them, the hardest part of finding the time to be on my vest. At bedtime is great -but in the mornings I have an awake toddler. As it is Im not getting enough sleep so to wake up an hour early for the vest is just not happening...sigh...soon I hope.
 
J

jbrandonAW

New member
Aww man yall are awesome... Its soo great to know others feel like me (which I guess is the point of this whole post). I have to say until just recently I sucked at doing meds. As of now I am great at taking all of them, the hardest part of finding the time to be on my vest. At bedtime is great -but in the mornings I have an awake toddler. As it is Im not getting enough sleep so to wake up an hour early for the vest is just not happening...sigh...soon I hope.
 
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