How does one manage....

ethansmomma · Feb 19, 2007

Hi everyone!! I am new to this site - my name is Robin, I am 29, just diagnosed in 2002 w/CF - how they didn't diagnose me until then is beyond me, seriously...
If something similar has been posted before about this, I apologize, again, I am new here, and have been reading and reading as much as I can, and haven't seen anything....
Here's my question. I am married with a son who is 1. I work at a call center taking customer service calls, full time, 9-6. I have worked all of my life doing a similar job. How does one manage to do it all?? And I am so serious. How does a person work a 40 hour job (meaning they are basically gone almost 10 hours a day between lunch and travel time), do all of the required treatments (vest, TOBI, pulmozyme), cook dinner, take care of a child AND a house all in one day??? Since my son came along, I just feel SO overwhelmed! I feel like I am exausted ALL of the time!!! Don't get me wrong, I love my little guy - he is my little angel, and as I have read others say, I just look at him and tell myself that I have to do ALL that I can for ME to be healthy to take care of HIM as long as possible...
My husband has to be the best man in the WORLD. He just goes so far beyond a normal husband... he helps with dishes, laundry, cooking, cleaning... he get's Ethan ready in the mornings... So you see he really helps a lot, and I am STILL exausted. Working part-time at my job is not an option, I have tried. Getting a part time job somewhere else wouldn't even cover daycare costs for Ethan. I would be working just to be able to send him to daycare, and well, what sense does that make.
I was just hoping maybe to get some opinions/suggestions on how to manage it all, and still have maybe some "quality" time with the family, you know??
My husband wants me to quit my job and apply for SSD, I called my doctor's office and talked to the nurse, just to ask where to even start on getting information, not saying that is what I am 100% for sure doing. She said to me, "You aren't disabled.". OK, I know this, all I wanted was information - she just made me feel like the biggest idiot, and like I am trying to get a handout or something from the government. Still makes me mad thinking about that.....
SORRY - if anyone can help me out I would appreciate it..
Oh - my FEV1 is around 65% - and at my last appointment, my doctor even told me that if I keep at the rate I am going, I'm cutting years, basically, off of my life. At one point within the last couple of years I was around 90% FEV1.... And that number has comtinued to drop slightly over the last several appointments.

<img src="i/expressions/face-icon-small-confused.gif" border="0">Thanks everyone - it's been nice reading all about you guys! <img src="i/expressions/face-icon-small-blush.gif" border="0">)

Robin

ethansmomma · Feb 19, 2007

Hi everyone!! I am new to this site - my name is Robin, I am 29, just diagnosed in 2002 w/CF - how they didn't diagnose me until then is beyond me, seriously...
If something similar has been posted before about this, I apologize, again, I am new here, and have been reading and reading as much as I can, and haven't seen anything....
Here's my question. I am married with a son who is 1. I work at a call center taking customer service calls, full time, 9-6. I have worked all of my life doing a similar job. How does one manage to do it all?? And I am so serious. How does a person work a 40 hour job (meaning they are basically gone almost 10 hours a day between lunch and travel time), do all of the required treatments (vest, TOBI, pulmozyme), cook dinner, take care of a child AND a house all in one day??? Since my son came along, I just feel SO overwhelmed! I feel like I am exausted ALL of the time!!! Don't get me wrong, I love my little guy - he is my little angel, and as I have read others say, I just look at him and tell myself that I have to do ALL that I can for ME to be healthy to take care of HIM as long as possible...
My husband has to be the best man in the WORLD. He just goes so far beyond a normal husband... he helps with dishes, laundry, cooking, cleaning... he get's Ethan ready in the mornings... So you see he really helps a lot, and I am STILL exausted. Working part-time at my job is not an option, I have tried. Getting a part time job somewhere else wouldn't even cover daycare costs for Ethan. I would be working just to be able to send him to daycare, and well, what sense does that make.
I was just hoping maybe to get some opinions/suggestions on how to manage it all, and still have maybe some "quality" time with the family, you know??
My husband wants me to quit my job and apply for SSD, I called my doctor's office and talked to the nurse, just to ask where to even start on getting information, not saying that is what I am 100% for sure doing. She said to me, "You aren't disabled.". OK, I know this, all I wanted was information - she just made me feel like the biggest idiot, and like I am trying to get a handout or something from the government. Still makes me mad thinking about that.....
SORRY - if anyone can help me out I would appreciate it..
Oh - my FEV1 is around 65% - and at my last appointment, my doctor even told me that if I keep at the rate I am going, I'm cutting years, basically, off of my life. At one point within the last couple of years I was around 90% FEV1.... And that number has comtinued to drop slightly over the last several appointments.

<img src="i/expressions/face-icon-small-confused.gif" border="0">Thanks everyone - it's been nice reading all about you guys! <img src="i/expressions/face-icon-small-blush.gif" border="0">)

Robin

ethansmomma · Feb 19, 2007

Hi everyone!! I am new to this site - my name is Robin, I am 29, just diagnosed in 2002 w/CF - how they didn't diagnose me until then is beyond me, seriously...
If something similar has been posted before about this, I apologize, again, I am new here, and have been reading and reading as much as I can, and haven't seen anything....
Here's my question. I am married with a son who is 1. I work at a call center taking customer service calls, full time, 9-6. I have worked all of my life doing a similar job. How does one manage to do it all?? And I am so serious. How does a person work a 40 hour job (meaning they are basically gone almost 10 hours a day between lunch and travel time), do all of the required treatments (vest, TOBI, pulmozyme), cook dinner, take care of a child AND a house all in one day??? Since my son came along, I just feel SO overwhelmed! I feel like I am exausted ALL of the time!!! Don't get me wrong, I love my little guy - he is my little angel, and as I have read others say, I just look at him and tell myself that I have to do ALL that I can for ME to be healthy to take care of HIM as long as possible...
My husband has to be the best man in the WORLD. He just goes so far beyond a normal husband... he helps with dishes, laundry, cooking, cleaning... he get's Ethan ready in the mornings... So you see he really helps a lot, and I am STILL exausted. Working part-time at my job is not an option, I have tried. Getting a part time job somewhere else wouldn't even cover daycare costs for Ethan. I would be working just to be able to send him to daycare, and well, what sense does that make.
I was just hoping maybe to get some opinions/suggestions on how to manage it all, and still have maybe some "quality" time with the family, you know??
My husband wants me to quit my job and apply for SSD, I called my doctor's office and talked to the nurse, just to ask where to even start on getting information, not saying that is what I am 100% for sure doing. She said to me, "You aren't disabled.". OK, I know this, all I wanted was information - she just made me feel like the biggest idiot, and like I am trying to get a handout or something from the government. Still makes me mad thinking about that.....
SORRY - if anyone can help me out I would appreciate it..
Oh - my FEV1 is around 65% - and at my last appointment, my doctor even told me that if I keep at the rate I am going, I'm cutting years, basically, off of my life. At one point within the last couple of years I was around 90% FEV1.... And that number has comtinued to drop slightly over the last several appointments.

<img src="i/expressions/face-icon-small-confused.gif" border="0">Thanks everyone - it's been nice reading all about you guys! <img src="i/expressions/face-icon-small-blush.gif" border="0">)

Robin

NoExcuses · Feb 19, 2007

This story seems pretty typical from what I'm hearing.... CFers have kids, they continue to work, and their health declines pretty rapidly. I'm sure you've read similar stories on this board.

I'm not big on public assistance, but I am big on staying at home and raising children. And I am also big on not dying and trying to stay around to be with your kid. Afterall, why have a kid if you're going to see him one or two hours a day due to work & meds? Seems silly to me.

I would advocate going on SSDI. Your kid will be grateful to be able to spend more time with you.

NoExcuses · Feb 19, 2007

This story seems pretty typical from what I'm hearing.... CFers have kids, they continue to work, and their health declines pretty rapidly. I'm sure you've read similar stories on this board.

I'm not big on public assistance, but I am big on staying at home and raising children. And I am also big on not dying and trying to stay around to be with your kid. Afterall, why have a kid if you're going to see him one or two hours a day due to work & meds? Seems silly to me.

I would advocate going on SSDI. Your kid will be grateful to be able to spend more time with you.

NoExcuses · Feb 19, 2007

This story seems pretty typical from what I'm hearing.... CFers have kids, they continue to work, and their health declines pretty rapidly. I'm sure you've read similar stories on this board.

I'm not big on public assistance, but I am big on staying at home and raising children. And I am also big on not dying and trying to stay around to be with your kid. Afterall, why have a kid if you're going to see him one or two hours a day due to work & meds? Seems silly to me.

I would advocate going on SSDI. Your kid will be grateful to be able to spend more time with you.

dasjsmum · Feb 19, 2007

As a mum to two younger children, one with cf (I also have two grown up with cf), I understand where you are coming from, and I'm sure everyone else does too, even those without children!! IT IS SOOO HARD!!
Last year I was doing a degree full time plus the house etc. and my cfer was not doing so well...we did heaps of sets of treatments which took up to an hour in the morning and arvo...trying to do it all...I'm thinking of deferring my studies this year as it all got too much...so stressed.

Personally, I'm with Amy on this, I think it is great to be at home with your kids if possible, mine are both at school, but there is still so much to do. Your health will suffer in the end, is it worth it...that's what I ask myself...the continuous pressure to have /need more money while we become more stressed and physically run down, too tired to do anything.

Perhaps you could work part time...is your work important to you? How badly do you need the money? Could you hold off a bit until your son gets older and is at school?

dasjsmum · Feb 19, 2007

As a mum to two younger children, one with cf (I also have two grown up with cf), I understand where you are coming from, and I'm sure everyone else does too, even those without children!! IT IS SOOO HARD!!
Last year I was doing a degree full time plus the house etc. and my cfer was not doing so well...we did heaps of sets of treatments which took up to an hour in the morning and arvo...trying to do it all...I'm thinking of deferring my studies this year as it all got too much...so stressed.

Personally, I'm with Amy on this, I think it is great to be at home with your kids if possible, mine are both at school, but there is still so much to do. Your health will suffer in the end, is it worth it...that's what I ask myself...the continuous pressure to have /need more money while we become more stressed and physically run down, too tired to do anything.

Perhaps you could work part time...is your work important to you? How badly do you need the money? Could you hold off a bit until your son gets older and is at school?

dasjsmum · Feb 19, 2007

As a mum to two younger children, one with cf (I also have two grown up with cf), I understand where you are coming from, and I'm sure everyone else does too, even those without children!! IT IS SOOO HARD!!
Last year I was doing a degree full time plus the house etc. and my cfer was not doing so well...we did heaps of sets of treatments which took up to an hour in the morning and arvo...trying to do it all...I'm thinking of deferring my studies this year as it all got too much...so stressed.

Personally, I'm with Amy on this, I think it is great to be at home with your kids if possible, mine are both at school, but there is still so much to do. Your health will suffer in the end, is it worth it...that's what I ask myself...the continuous pressure to have /need more money while we become more stressed and physically run down, too tired to do anything.

Perhaps you could work part time...is your work important to you? How badly do you need the money? Could you hold off a bit until your son gets older and is at school?

Ratatosk · Feb 19, 2007

Are there any jobs in closer proximity -- so you can save on commute time, plus be able to do a load of laundry, a treatment at home over the noon hour. Is there any way you can do a treatment over your lunch hour or during your commute? Get a power inverter and hook your compressor into the cigarrette lighter and do Tobi treatments? Just a thought...

What about hiring a cleaning person to come in every other week just to scrub and vacuum floors?

Ratatosk · Feb 19, 2007

Are there any jobs in closer proximity -- so you can save on commute time, plus be able to do a load of laundry, a treatment at home over the noon hour. Is there any way you can do a treatment over your lunch hour or during your commute? Get a power inverter and hook your compressor into the cigarrette lighter and do Tobi treatments? Just a thought...

What about hiring a cleaning person to come in every other week just to scrub and vacuum floors?

Ratatosk · Feb 19, 2007

Are there any jobs in closer proximity -- so you can save on commute time, plus be able to do a load of laundry, a treatment at home over the noon hour. Is there any way you can do a treatment over your lunch hour or during your commute? Get a power inverter and hook your compressor into the cigarrette lighter and do Tobi treatments? Just a thought...

What about hiring a cleaning person to come in every other week just to scrub and vacuum floors?

NoExcuses · Feb 19, 2007

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i>
Get a power inverter and hook your compressor into the cigarrette lighter and do Tobi treatments? Just a thought...
</end quote></div>

that could lower PSI.... be very cautious when you do that with compressors and meds like TOBI.....

NoExcuses · Feb 19, 2007

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i>
Get a power inverter and hook your compressor into the cigarrette lighter and do Tobi treatments? Just a thought...
</end quote></div>

that could lower PSI.... be very cautious when you do that with compressors and meds like TOBI.....

NoExcuses · Feb 19, 2007

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i>
Get a power inverter and hook your compressor into the cigarrette lighter and do Tobi treatments? Just a thought...
</end quote></div>

that could lower PSI.... be very cautious when you do that with compressors and meds like TOBI.....

tapia · Feb 19, 2007

Robin,

I know it all too well...I work 40 hours and last month was one of my hardest. I had a clinic appointment and my doctor told me that my numbers were going down again. So he told me that if i didn't do my treatments the way i am supposed to i will continue to drop. And he made the perfect point...do you want to see your daughter get married? Graduate from Highschool? My baby is going to be 5 next month.

Well i was bummed but i knew i had to do something. I can't afford to eat out everynight, so i have to cook for her and my hubby...i do laundry and clean the house. So i spoke to my boss and told him...i need to come in to work at 10 am instead of 8:30am to do my morning treatments and i cannot leave work later than 7 pm for my night treatments. I still cook when i get home but i don't clean. It's up to my hubby to help there. I do very light picking up around the house during the week because my daughter likes me to read to her or just sit around and talk...so we do that ....but the real cleaning is done on the weekends. Unless you can afford for someone to clean your house once a week/or biweekly.

Honestly, i do every treatments and haven't missed one since January and i can honestly say i feel a whole lot better. And i can tell the difference from before.

I get tired, and when i completely feel so tired i just do my treatments and nothing else. I let them eat a frozen dinner for one night. Or take a day off from work when you feel tired...still send your son to daycare and sleep and rest it off. That is what i have been doing. I feel a lot better...

tapia · Feb 19, 2007

Robin,

I know it all too well...I work 40 hours and last month was one of my hardest. I had a clinic appointment and my doctor told me that my numbers were going down again. So he told me that if i didn't do my treatments the way i am supposed to i will continue to drop. And he made the perfect point...do you want to see your daughter get married? Graduate from Highschool? My baby is going to be 5 next month.

Well i was bummed but i knew i had to do something. I can't afford to eat out everynight, so i have to cook for her and my hubby...i do laundry and clean the house. So i spoke to my boss and told him...i need to come in to work at 10 am instead of 8:30am to do my morning treatments and i cannot leave work later than 7 pm for my night treatments. I still cook when i get home but i don't clean. It's up to my hubby to help there. I do very light picking up around the house during the week because my daughter likes me to read to her or just sit around and talk...so we do that ....but the real cleaning is done on the weekends. Unless you can afford for someone to clean your house once a week/or biweekly.

Honestly, i do every treatments and haven't missed one since January and i can honestly say i feel a whole lot better. And i can tell the difference from before.

I get tired, and when i completely feel so tired i just do my treatments and nothing else. I let them eat a frozen dinner for one night. Or take a day off from work when you feel tired...still send your son to daycare and sleep and rest it off. That is what i have been doing. I feel a lot better...

tapia · Feb 19, 2007

Robin,

I know it all too well...I work 40 hours and last month was one of my hardest. I had a clinic appointment and my doctor told me that my numbers were going down again. So he told me that if i didn't do my treatments the way i am supposed to i will continue to drop. And he made the perfect point...do you want to see your daughter get married? Graduate from Highschool? My baby is going to be 5 next month.

Well i was bummed but i knew i had to do something. I can't afford to eat out everynight, so i have to cook for her and my hubby...i do laundry and clean the house. So i spoke to my boss and told him...i need to come in to work at 10 am instead of 8:30am to do my morning treatments and i cannot leave work later than 7 pm for my night treatments. I still cook when i get home but i don't clean. It's up to my hubby to help there. I do very light picking up around the house during the week because my daughter likes me to read to her or just sit around and talk...so we do that ....but the real cleaning is done on the weekends. Unless you can afford for someone to clean your house once a week/or biweekly.

Honestly, i do every treatments and haven't missed one since January and i can honestly say i feel a whole lot better. And i can tell the difference from before.

I get tired, and when i completely feel so tired i just do my treatments and nothing else. I let them eat a frozen dinner for one night. Or take a day off from work when you feel tired...still send your son to daycare and sleep and rest it off. That is what i have been doing. I feel a lot better...

Ratatosk · Feb 19, 2007

Even using a pari-proneb hooked into the power inverter? Not the pari trek.. I thought there were a couple people who used their regular compressors, with the power inverter here? Good to know if that's the case. I've thought about it, but we've never taken any major road trips with DS where he needs nebs along the way. We've always stopped before he needs his treatments.

Ratatosk · Feb 19, 2007

Even using a pari-proneb hooked into the power inverter? Not the pari trek.. I thought there were a couple people who used their regular compressors, with the power inverter here? Good to know if that's the case. I've thought about it, but we've never taken any major road trips with DS where he needs nebs along the way. We've always stopped before he needs his treatments.

How does one manage....

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