what do you guys do in a day?

[melleemac]

Hi
I have twin 12 year olds with cf. The only advice I can really give you is to get into a routine that suits you and stick to it. Easier said then done I know. My boys have to get up between 5.30am and 6am every school day morning. Once up they take their advair and then half an hour of manual physiotherapy each. Then breakfast and the majority of their meds, then about half an hour of compressor meds, tobramycin. They have to be out for the bus by 8am for school. A physiotherapist goes to the school around lunch time to do their next treatment. They get in from school around 3.30 and normally nap, once awake they do their pulmozyme, supper and meds, homework, another physio treatment, and then tobramycin again. Its really hectic and tiring on them but its their way of life. Yes sometimes they get really down about it, at times really ticked off because they cant stay outside with their friends, but they also know the outcome if they dont do it. They have alot of hospital appointments and stays so have to play catch up at school alot, they just do the best they can which is all anyone can ask for. Take care!
Mel

 

[melleemac]

Hi
I have twin 12 year olds with cf. The only advice I can really give you is to get into a routine that suits you and stick to it. Easier said then done I know. My boys have to get up between 5.30am and 6am every school day morning. Once up they take their advair and then half an hour of manual physiotherapy each. Then breakfast and the majority of their meds, then about half an hour of compressor meds, tobramycin. They have to be out for the bus by 8am for school. A physiotherapist goes to the school around lunch time to do their next treatment. They get in from school around 3.30 and normally nap, once awake they do their pulmozyme, supper and meds, homework, another physio treatment, and then tobramycin again. Its really hectic and tiring on them but its their way of life. Yes sometimes they get really down about it, at times really ticked off because they cant stay outside with their friends, but they also know the outcome if they dont do it. They have alot of hospital appointments and stays so have to play catch up at school alot, they just do the best they can which is all anyone can ask for. Take care!
Mel

 

[melleemac]

Hi
I have twin 12 year olds with cf. The only advice I can really give you is to get into a routine that suits you and stick to it. Easier said then done I know. My boys have to get up between 5.30am and 6am every school day morning. Once up they take their advair and then half an hour of manual physiotherapy each. Then breakfast and the majority of their meds, then about half an hour of compressor meds, tobramycin. They have to be out for the bus by 8am for school. A physiotherapist goes to the school around lunch time to do their next treatment. They get in from school around 3.30 and normally nap, once awake they do their pulmozyme, supper and meds, homework, another physio treatment, and then tobramycin again. Its really hectic and tiring on them but its their way of life. Yes sometimes they get really down about it, at times really ticked off because they cant stay outside with their friends, but they also know the outcome if they dont do it. They have alot of hospital appointments and stays so have to play catch up at school alot, they just do the best they can which is all anyone can ask for. Take care!
Mel

 

[melleemac]

Hi
I have twin 12 year olds with cf. The only advice I can really give you is to get into a routine that suits you and stick to it. Easier said then done I know. My boys have to get up between 5.30am and 6am every school day morning. Once up they take their advair and then half an hour of manual physiotherapy each. Then breakfast and the majority of their meds, then about half an hour of compressor meds, tobramycin. They have to be out for the bus by 8am for school. A physiotherapist goes to the school around lunch time to do their next treatment. They get in from school around 3.30 and normally nap, once awake they do their pulmozyme, supper and meds, homework, another physio treatment, and then tobramycin again. Its really hectic and tiring on them but its their way of life. Yes sometimes they get really down about it, at times really ticked off because they cant stay outside with their friends, but they also know the outcome if they dont do it. They have alot of hospital appointments and stays so have to play catch up at school alot, they just do the best they can which is all anyone can ask for. Take care!
Mel

 

[melleemac]

Hi
I have twin 12 year olds with cf. The only advice I can really give you is to get into a routine that suits you and stick to it. Easier said then done I know. My boys have to get up between 5.30am and 6am every school day morning. Once up they take their advair and then half an hour of manual physiotherapy each. Then breakfast and the majority of their meds, then about half an hour of compressor meds, tobramycin. They have to be out for the bus by 8am for school. A physiotherapist goes to the school around lunch time to do their next treatment. They get in from school around 3.30 and normally nap, once awake they do their pulmozyme, supper and meds, homework, another physio treatment, and then tobramycin again. Its really hectic and tiring on them but its their way of life. Yes sometimes they get really down about it, at times really ticked off because they cant stay outside with their friends, but they also know the outcome if they dont do it. They have alot of hospital appointments and stays so have to play catch up at school alot, they just do the best they can which is all anyone can ask for. Take care!
Mel

 

[beleache]

Hi, I don't have much to add.. just want you to know that you are not alone.. if you want to talk pm me... Take care and God Bless you.. <img src="i/expressions/heart.gif" border="0">

 

[beleache]

Hi, I don't have much to add.. just want you to know that you are not alone.. if you want to talk pm me... Take care and God Bless you.. <img src="i/expressions/heart.gif" border="0">

 

[beleache]

Hi, I don't have much to add.. just want you to know that you are not alone.. if you want to talk pm me... Take care and God Bless you.. <img src="i/expressions/heart.gif" border="0">

 

[beleache]

Hi, I don't have much to add.. just want you to know that you are not alone.. if you want to talk pm me... Take care and God Bless you.. <img src="i/expressions/heart.gif" border="0">

 

[beleache]

Hi, I don't have much to add.. just want you to know that you are not alone.. if you want to talk pm me... Take care and God Bless you.. <img src="i/expressions/heart.gif" border="0">

 

[bittyhorse23]

We all get down in the dumps about this disease...it is natural. I am going through alot metally right now and am getting started on anti-depressants for it <img src="i/expressions/face-icon-small-sad.gif" border="0">

I work full time and always have and it has never really been a problem with me. I do my treatments in the morning before I go to work and when I get home from work. I don't do much social during the week because I need sleep and to do my treatments so I make up for it on the weekends. It is just a matter of having a routine. I also go to school full time but my classes are all online because I know that trying to find time to go to an on campus school would deplete me physically.

If you know you can not work full time but want to work find something part time with hours that you can work during your "best" time of the day. It may make you feel better <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[bittyhorse23]

We all get down in the dumps about this disease...it is natural. I am going through alot metally right now and am getting started on anti-depressants for it <img src="i/expressions/face-icon-small-sad.gif" border="0">

I work full time and always have and it has never really been a problem with me. I do my treatments in the morning before I go to work and when I get home from work. I don't do much social during the week because I need sleep and to do my treatments so I make up for it on the weekends. It is just a matter of having a routine. I also go to school full time but my classes are all online because I know that trying to find time to go to an on campus school would deplete me physically.

If you know you can not work full time but want to work find something part time with hours that you can work during your "best" time of the day. It may make you feel better <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[bittyhorse23]

We all get down in the dumps about this disease...it is natural. I am going through alot metally right now and am getting started on anti-depressants for it <img src="i/expressions/face-icon-small-sad.gif" border="0">

I work full time and always have and it has never really been a problem with me. I do my treatments in the morning before I go to work and when I get home from work. I don't do much social during the week because I need sleep and to do my treatments so I make up for it on the weekends. It is just a matter of having a routine. I also go to school full time but my classes are all online because I know that trying to find time to go to an on campus school would deplete me physically.

If you know you can not work full time but want to work find something part time with hours that you can work during your "best" time of the day. It may make you feel better <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[bittyhorse23]

We all get down in the dumps about this disease...it is natural. I am going through alot metally right now and am getting started on anti-depressants for it <img src="i/expressions/face-icon-small-sad.gif" border="0">

I work full time and always have and it has never really been a problem with me. I do my treatments in the morning before I go to work and when I get home from work. I don't do much social during the week because I need sleep and to do my treatments so I make up for it on the weekends. It is just a matter of having a routine. I also go to school full time but my classes are all online because I know that trying to find time to go to an on campus school would deplete me physically.

If you know you can not work full time but want to work find something part time with hours that you can work during your "best" time of the day. It may make you feel better <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[bittyhorse23]

We all get down in the dumps about this disease...it is natural. I am going through alot metally right now and am getting started on anti-depressants for it <img src="i/expressions/face-icon-small-sad.gif" border="0">

I work full time and always have and it has never really been a problem with me. I do my treatments in the morning before I go to work and when I get home from work. I don't do much social during the week because I need sleep and to do my treatments so I make up for it on the weekends. It is just a matter of having a routine. I also go to school full time but my classes are all online because I know that trying to find time to go to an on campus school would deplete me physically.

If you know you can not work full time but want to work find something part time with hours that you can work during your "best" time of the day. It may make you feel better <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Aspiemom]

Yes, we all get tired of feeling sick and being restricted. Some days are better than others. I don't really have anyone to talk to, either, except for my mother. She's 40 min. away and we talk by cell phone a few times a day, even though there's not a lot going on to talk about! Who else is going to listen to my health report of the day?<img src="i/expressions/face-icon-small-wink.gif" border="0"><img src="i/expressions/coughing.gif" border="0">

I've often wondered, too, how people manage when they work or go to school. My visiting nurse told me she's given IV treatments to lawyers in their offices - sounds weird to me. I am considered disabled and I homeschool my son and have a hard time getting it all done, especially in the morning. My nebs/medicine routine takes me about 2 hrs. I just started the Hyper-Tonic saline and I'm not adjusting too well to it and have to stop often until I can stop my coughing and resume and that really adds on to the time. I'm supposed to get a Vest soon, but I understand I can use that at the same time as some Nebs. But I can't teach school, etc. with the neb in my mouth so it does cramp my style. Sunday mornings it's hard to get to church on time!

 

[Aspiemom]

Yes, we all get tired of feeling sick and being restricted. Some days are better than others. I don't really have anyone to talk to, either, except for my mother. She's 40 min. away and we talk by cell phone a few times a day, even though there's not a lot going on to talk about! Who else is going to listen to my health report of the day?<img src="i/expressions/face-icon-small-wink.gif" border="0"><img src="i/expressions/coughing.gif" border="0">

I've often wondered, too, how people manage when they work or go to school. My visiting nurse told me she's given IV treatments to lawyers in their offices - sounds weird to me. I am considered disabled and I homeschool my son and have a hard time getting it all done, especially in the morning. My nebs/medicine routine takes me about 2 hrs. I just started the Hyper-Tonic saline and I'm not adjusting too well to it and have to stop often until I can stop my coughing and resume and that really adds on to the time. I'm supposed to get a Vest soon, but I understand I can use that at the same time as some Nebs. But I can't teach school, etc. with the neb in my mouth so it does cramp my style. Sunday mornings it's hard to get to church on time!

 

[Aspiemom]

Yes, we all get tired of feeling sick and being restricted. Some days are better than others. I don't really have anyone to talk to, either, except for my mother. She's 40 min. away and we talk by cell phone a few times a day, even though there's not a lot going on to talk about! Who else is going to listen to my health report of the day?<img src="i/expressions/face-icon-small-wink.gif" border="0"><img src="i/expressions/coughing.gif" border="0">

I've often wondered, too, how people manage when they work or go to school. My visiting nurse told me she's given IV treatments to lawyers in their offices - sounds weird to me. I am considered disabled and I homeschool my son and have a hard time getting it all done, especially in the morning. My nebs/medicine routine takes me about 2 hrs. I just started the Hyper-Tonic saline and I'm not adjusting too well to it and have to stop often until I can stop my coughing and resume and that really adds on to the time. I'm supposed to get a Vest soon, but I understand I can use that at the same time as some Nebs. But I can't teach school, etc. with the neb in my mouth so it does cramp my style. Sunday mornings it's hard to get to church on time!

 

[Aspiemom]

Yes, we all get tired of feeling sick and being restricted. Some days are better than others. I don't really have anyone to talk to, either, except for my mother. She's 40 min. away and we talk by cell phone a few times a day, even though there's not a lot going on to talk about! Who else is going to listen to my health report of the day?<img src="i/expressions/face-icon-small-wink.gif" border="0"><img src="i/expressions/coughing.gif" border="0">

I've often wondered, too, how people manage when they work or go to school. My visiting nurse told me she's given IV treatments to lawyers in their offices - sounds weird to me. I am considered disabled and I homeschool my son and have a hard time getting it all done, especially in the morning. My nebs/medicine routine takes me about 2 hrs. I just started the Hyper-Tonic saline and I'm not adjusting too well to it and have to stop often until I can stop my coughing and resume and that really adds on to the time. I'm supposed to get a Vest soon, but I understand I can use that at the same time as some Nebs. But I can't teach school, etc. with the neb in my mouth so it does cramp my style. Sunday mornings it's hard to get to church on time!

 

[Aspiemom]

Yes, we all get tired of feeling sick and being restricted. Some days are better than others. I don't really have anyone to talk to, either, except for my mother. She's 40 min. away and we talk by cell phone a few times a day, even though there's not a lot going on to talk about! Who else is going to listen to my health report of the day?<img src="i/expressions/face-icon-small-wink.gif" border="0"><img src="i/expressions/coughing.gif" border="0">

I've often wondered, too, how people manage when they work or go to school. My visiting nurse told me she's given IV treatments to lawyers in their offices - sounds weird to me. I am considered disabled and I homeschool my son and have a hard time getting it all done, especially in the morning. My nebs/medicine routine takes me about 2 hrs. I just started the Hyper-Tonic saline and I'm not adjusting too well to it and have to stop often until I can stop my coughing and resume and that really adds on to the time. I'm supposed to get a Vest soon, but I understand I can use that at the same time as some Nebs. But I can't teach school, etc. with the neb in my mouth so it does cramp my style. Sunday mornings it's hard to get to church on time!