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.
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How does one manage....
- Thread starter ethansmomma
- Start date
lightNlife
New member
As much as we all wish we could "have it all", there comes a time when we have to face up to the reality that we cannot have it all. Sacrifices have to be made in order to maintain our health and overall quality of life. Personally, I feel that health and family should be made a priority over working outside the home.
Plan carefully and make wise decisions. Learn how to budget your energy and your financial resources. You may find that working outside of the home won't always be a possibility for you. Don't be afraid to ask for help when you need it, and be sure to have a support system available to you (family, friends, etc.) who can help fill in the gaps when you have to do a tune-up or something.
Remember that even people without CF often fall far short of being able to "do it all." Don't put undue pressure on yourself, it will only backfire.
Best wishes
Plan carefully and make wise decisions. Learn how to budget your energy and your financial resources. You may find that working outside of the home won't always be a possibility for you. Don't be afraid to ask for help when you need it, and be sure to have a support system available to you (family, friends, etc.) who can help fill in the gaps when you have to do a tune-up or something.
Remember that even people without CF often fall far short of being able to "do it all." Don't put undue pressure on yourself, it will only backfire.
Best wishes
lightNlife
New member
As much as we all wish we could "have it all", there comes a time when we have to face up to the reality that we cannot have it all. Sacrifices have to be made in order to maintain our health and overall quality of life. Personally, I feel that health and family should be made a priority over working outside the home.
Plan carefully and make wise decisions. Learn how to budget your energy and your financial resources. You may find that working outside of the home won't always be a possibility for you. Don't be afraid to ask for help when you need it, and be sure to have a support system available to you (family, friends, etc.) who can help fill in the gaps when you have to do a tune-up or something.
Remember that even people without CF often fall far short of being able to "do it all." Don't put undue pressure on yourself, it will only backfire.
Best wishes
Plan carefully and make wise decisions. Learn how to budget your energy and your financial resources. You may find that working outside of the home won't always be a possibility for you. Don't be afraid to ask for help when you need it, and be sure to have a support system available to you (family, friends, etc.) who can help fill in the gaps when you have to do a tune-up or something.
Remember that even people without CF often fall far short of being able to "do it all." Don't put undue pressure on yourself, it will only backfire.
Best wishes
lightNlife
New member
As much as we all wish we could "have it all", there comes a time when we have to face up to the reality that we cannot have it all. Sacrifices have to be made in order to maintain our health and overall quality of life. Personally, I feel that health and family should be made a priority over working outside the home.
Plan carefully and make wise decisions. Learn how to budget your energy and your financial resources. You may find that working outside of the home won't always be a possibility for you. Don't be afraid to ask for help when you need it, and be sure to have a support system available to you (family, friends, etc.) who can help fill in the gaps when you have to do a tune-up or something.
Remember that even people without CF often fall far short of being able to "do it all." Don't put undue pressure on yourself, it will only backfire.
Best wishes
Plan carefully and make wise decisions. Learn how to budget your energy and your financial resources. You may find that working outside of the home won't always be a possibility for you. Don't be afraid to ask for help when you need it, and be sure to have a support system available to you (family, friends, etc.) who can help fill in the gaps when you have to do a tune-up or something.
Remember that even people without CF often fall far short of being able to "do it all." Don't put undue pressure on yourself, it will only backfire.
Best wishes
I stay at home with our 3 year old, and I still can't seem to get it all done!<img src="i/expressions/face-icon-small-blush.gif" border="0"> But staying home lets me nap, exercise, do my meds and extra meds when I need to, etc. I would seriously consider it if you don't "need" to work (for insurance, etc.<img src="i/expressions/face-icon-small-wink.gif" border="0"> ). It will also cut down on your exposure to other people who feel the need to come to work sick, and pass it on to everyone else<img src="i/expressions/face-icon-small-frown.gif" border="0"> .
I stay at home with our 3 year old, and I still can't seem to get it all done!<img src="i/expressions/face-icon-small-blush.gif" border="0"> But staying home lets me nap, exercise, do my meds and extra meds when I need to, etc. I would seriously consider it if you don't "need" to work (for insurance, etc.<img src="i/expressions/face-icon-small-wink.gif" border="0"> ). It will also cut down on your exposure to other people who feel the need to come to work sick, and pass it on to everyone else<img src="i/expressions/face-icon-small-frown.gif" border="0"> .
I stay at home with our 3 year old, and I still can't seem to get it all done!<img src="i/expressions/face-icon-small-blush.gif" border="0"> But staying home lets me nap, exercise, do my meds and extra meds when I need to, etc. I would seriously consider it if you don't "need" to work (for insurance, etc.<img src="i/expressions/face-icon-small-wink.gif" border="0"> ). It will also cut down on your exposure to other people who feel the need to come to work sick, and pass it on to everyone else<img src="i/expressions/face-icon-small-frown.gif" border="0"> .
Emily65Roses
New member
Given that you've looked into part-time work and it doesn't fit somehow... I say SS also. That nurse had no right to tell you "you're not disabled" unless she knows you personally. If your health is going to hell because of all the work you're putting in, you need to cut back. Period, end of story. I hate people that judge without knowing all the information, it really pisses me off.
Having said that, apply for disability. There's some starter information here:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ssa.gov/d&s1.htm">SS</a>
Having said that, apply for disability. There's some starter information here:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ssa.gov/d&s1.htm">SS</a>
Emily65Roses
New member
Given that you've looked into part-time work and it doesn't fit somehow... I say SS also. That nurse had no right to tell you "you're not disabled" unless she knows you personally. If your health is going to hell because of all the work you're putting in, you need to cut back. Period, end of story. I hate people that judge without knowing all the information, it really pisses me off.
Having said that, apply for disability. There's some starter information here:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ssa.gov/d&s1.htm">SS</a>
Having said that, apply for disability. There's some starter information here:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ssa.gov/d&s1.htm">SS</a>
Emily65Roses
New member
Given that you've looked into part-time work and it doesn't fit somehow... I say SS also. That nurse had no right to tell you "you're not disabled" unless she knows you personally. If your health is going to hell because of all the work you're putting in, you need to cut back. Period, end of story. I hate people that judge without knowing all the information, it really pisses me off.
Having said that, apply for disability. There's some starter information here:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ssa.gov/d&s1.htm">SS</a>
Having said that, apply for disability. There's some starter information here:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ssa.gov/d&s1.htm">SS</a>
JennifersHope
New member
As some one who works 50 plus hours a week and spends for the most part commuting an hour each way to work.... (depending on what campus I go to) I can honestly tell you.. It is impossible to do it all..
I was 29 when I was dx with CF as well.. how they missed the dx is beyond me as well.. I was born with pneumonia....and had it every year since I was born...
I just recently graduated from Nursing school and even going to nursing school was so hard on me... I dragged myself across campus many of times using an umbrella as an IV pole.. It took a real toll on my health....I was in the hospital every 12 weeks at the min.... I couldn't keep up with my treatments and sleep.. and homework...I had to let some things drop.. and since I wouldn't let it be my grades or my job it was usually my health
Right now I am still overdoing it..and I am not doing my treatments that good...I have not done a sputum culture because I am to afraid to have to go on IVs at the moment.
It doesn't help that I am a total pushover and always offer to help and stay late and come in early... For me the only answer I can think of..to be able to cut back on my hours at work is I have to reduce my bills.....
My plan is to move to a less expensive area and buy a home there...This way I won't have to work so much, and I will have more time to enjoy my "more healthy years"
I want to enjoy my life...so I guess the bottom line is.. You have to cut something somewhere.... I would push the SSI issue.. Part of me wishes that I Could do it.. I am sick to death of paying 2 and 3 thousand dollars a month to try to catch up on medical bills... without hope of stopping.
good luck
Jennifer
I was 29 when I was dx with CF as well.. how they missed the dx is beyond me as well.. I was born with pneumonia....and had it every year since I was born...
I just recently graduated from Nursing school and even going to nursing school was so hard on me... I dragged myself across campus many of times using an umbrella as an IV pole.. It took a real toll on my health....I was in the hospital every 12 weeks at the min.... I couldn't keep up with my treatments and sleep.. and homework...I had to let some things drop.. and since I wouldn't let it be my grades or my job it was usually my health
Right now I am still overdoing it..and I am not doing my treatments that good...I have not done a sputum culture because I am to afraid to have to go on IVs at the moment.
It doesn't help that I am a total pushover and always offer to help and stay late and come in early... For me the only answer I can think of..to be able to cut back on my hours at work is I have to reduce my bills.....
My plan is to move to a less expensive area and buy a home there...This way I won't have to work so much, and I will have more time to enjoy my "more healthy years"
I want to enjoy my life...so I guess the bottom line is.. You have to cut something somewhere.... I would push the SSI issue.. Part of me wishes that I Could do it.. I am sick to death of paying 2 and 3 thousand dollars a month to try to catch up on medical bills... without hope of stopping.
good luck
Jennifer
JennifersHope
New member
As some one who works 50 plus hours a week and spends for the most part commuting an hour each way to work.... (depending on what campus I go to) I can honestly tell you.. It is impossible to do it all..
I was 29 when I was dx with CF as well.. how they missed the dx is beyond me as well.. I was born with pneumonia....and had it every year since I was born...
I just recently graduated from Nursing school and even going to nursing school was so hard on me... I dragged myself across campus many of times using an umbrella as an IV pole.. It took a real toll on my health....I was in the hospital every 12 weeks at the min.... I couldn't keep up with my treatments and sleep.. and homework...I had to let some things drop.. and since I wouldn't let it be my grades or my job it was usually my health
Right now I am still overdoing it..and I am not doing my treatments that good...I have not done a sputum culture because I am to afraid to have to go on IVs at the moment.
It doesn't help that I am a total pushover and always offer to help and stay late and come in early... For me the only answer I can think of..to be able to cut back on my hours at work is I have to reduce my bills.....
My plan is to move to a less expensive area and buy a home there...This way I won't have to work so much, and I will have more time to enjoy my "more healthy years"
I want to enjoy my life...so I guess the bottom line is.. You have to cut something somewhere.... I would push the SSI issue.. Part of me wishes that I Could do it.. I am sick to death of paying 2 and 3 thousand dollars a month to try to catch up on medical bills... without hope of stopping.
good luck
Jennifer
I was 29 when I was dx with CF as well.. how they missed the dx is beyond me as well.. I was born with pneumonia....and had it every year since I was born...
I just recently graduated from Nursing school and even going to nursing school was so hard on me... I dragged myself across campus many of times using an umbrella as an IV pole.. It took a real toll on my health....I was in the hospital every 12 weeks at the min.... I couldn't keep up with my treatments and sleep.. and homework...I had to let some things drop.. and since I wouldn't let it be my grades or my job it was usually my health
Right now I am still overdoing it..and I am not doing my treatments that good...I have not done a sputum culture because I am to afraid to have to go on IVs at the moment.
It doesn't help that I am a total pushover and always offer to help and stay late and come in early... For me the only answer I can think of..to be able to cut back on my hours at work is I have to reduce my bills.....
My plan is to move to a less expensive area and buy a home there...This way I won't have to work so much, and I will have more time to enjoy my "more healthy years"
I want to enjoy my life...so I guess the bottom line is.. You have to cut something somewhere.... I would push the SSI issue.. Part of me wishes that I Could do it.. I am sick to death of paying 2 and 3 thousand dollars a month to try to catch up on medical bills... without hope of stopping.
good luck
Jennifer
JennifersHope
New member
As some one who works 50 plus hours a week and spends for the most part commuting an hour each way to work.... (depending on what campus I go to) I can honestly tell you.. It is impossible to do it all..
I was 29 when I was dx with CF as well.. how they missed the dx is beyond me as well.. I was born with pneumonia....and had it every year since I was born...
I just recently graduated from Nursing school and even going to nursing school was so hard on me... I dragged myself across campus many of times using an umbrella as an IV pole.. It took a real toll on my health....I was in the hospital every 12 weeks at the min.... I couldn't keep up with my treatments and sleep.. and homework...I had to let some things drop.. and since I wouldn't let it be my grades or my job it was usually my health
Right now I am still overdoing it..and I am not doing my treatments that good...I have not done a sputum culture because I am to afraid to have to go on IVs at the moment.
It doesn't help that I am a total pushover and always offer to help and stay late and come in early... For me the only answer I can think of..to be able to cut back on my hours at work is I have to reduce my bills.....
My plan is to move to a less expensive area and buy a home there...This way I won't have to work so much, and I will have more time to enjoy my "more healthy years"
I want to enjoy my life...so I guess the bottom line is.. You have to cut something somewhere.... I would push the SSI issue.. Part of me wishes that I Could do it.. I am sick to death of paying 2 and 3 thousand dollars a month to try to catch up on medical bills... without hope of stopping.
good luck
Jennifer
I was 29 when I was dx with CF as well.. how they missed the dx is beyond me as well.. I was born with pneumonia....and had it every year since I was born...
I just recently graduated from Nursing school and even going to nursing school was so hard on me... I dragged myself across campus many of times using an umbrella as an IV pole.. It took a real toll on my health....I was in the hospital every 12 weeks at the min.... I couldn't keep up with my treatments and sleep.. and homework...I had to let some things drop.. and since I wouldn't let it be my grades or my job it was usually my health
Right now I am still overdoing it..and I am not doing my treatments that good...I have not done a sputum culture because I am to afraid to have to go on IVs at the moment.
It doesn't help that I am a total pushover and always offer to help and stay late and come in early... For me the only answer I can think of..to be able to cut back on my hours at work is I have to reduce my bills.....
My plan is to move to a less expensive area and buy a home there...This way I won't have to work so much, and I will have more time to enjoy my "more healthy years"
I want to enjoy my life...so I guess the bottom line is.. You have to cut something somewhere.... I would push the SSI issue.. Part of me wishes that I Could do it.. I am sick to death of paying 2 and 3 thousand dollars a month to try to catch up on medical bills... without hope of stopping.
good luck
Jennifer
mom2lillian
New member
Perhaps if you are not able to or ready to go to part time or get SSI can you use some FMLA time?
My employer covers me under FMLA (if there are 40 in your company they have to also cover you) anyway if I blow red on peak flow or feel somethign coming on I stay home for a day or two and do extra treatments and rest, I cannot tell you how many colds infections etc this has suppressed or averted for me ( I learned this from someone who worked with AIDS patients and could not come to work by mandate if they felt least bit sick and they noticed they got sick far less often if they stayed home day before they were actually sick--now if only we could get everyone at work to do this instead of spreading aroudn their junk!).
Also when I am at work I am germ crazy, if someone comes to work sick I wait until they go to lunch or home for day and I spray their area with lysol <img src="i/expressions/face-icon-small-blush.gif" border="0"> if they work right by me and I do this for my desk area daily, I also have stopped touching handles, community phones keyboards etc without washign afterwards whcih helps.
ALso, if your #'s have dropped that much should you not be on IV's? I also get time off when on IV's so I woudl take that time off plus a couple days at end to get energy back, is htis an option for you? I work for a very large company so I do realize not everyone may have these abilities so I am just throwing ideas out there.
I hope you figure out what works for you and I am sorry your nurse sucks as that was really crappy of her but I do believe their are guidelines they have to go by for who can qualify and who cannot depending on lung functions etc but she very well could have went about it better
My employer covers me under FMLA (if there are 40 in your company they have to also cover you) anyway if I blow red on peak flow or feel somethign coming on I stay home for a day or two and do extra treatments and rest, I cannot tell you how many colds infections etc this has suppressed or averted for me ( I learned this from someone who worked with AIDS patients and could not come to work by mandate if they felt least bit sick and they noticed they got sick far less often if they stayed home day before they were actually sick--now if only we could get everyone at work to do this instead of spreading aroudn their junk!).
Also when I am at work I am germ crazy, if someone comes to work sick I wait until they go to lunch or home for day and I spray their area with lysol <img src="i/expressions/face-icon-small-blush.gif" border="0"> if they work right by me and I do this for my desk area daily, I also have stopped touching handles, community phones keyboards etc without washign afterwards whcih helps.
ALso, if your #'s have dropped that much should you not be on IV's? I also get time off when on IV's so I woudl take that time off plus a couple days at end to get energy back, is htis an option for you? I work for a very large company so I do realize not everyone may have these abilities so I am just throwing ideas out there.
I hope you figure out what works for you and I am sorry your nurse sucks as that was really crappy of her but I do believe their are guidelines they have to go by for who can qualify and who cannot depending on lung functions etc but she very well could have went about it better
mom2lillian
New member
Perhaps if you are not able to or ready to go to part time or get SSI can you use some FMLA time?
My employer covers me under FMLA (if there are 40 in your company they have to also cover you) anyway if I blow red on peak flow or feel somethign coming on I stay home for a day or two and do extra treatments and rest, I cannot tell you how many colds infections etc this has suppressed or averted for me ( I learned this from someone who worked with AIDS patients and could not come to work by mandate if they felt least bit sick and they noticed they got sick far less often if they stayed home day before they were actually sick--now if only we could get everyone at work to do this instead of spreading aroudn their junk!).
Also when I am at work I am germ crazy, if someone comes to work sick I wait until they go to lunch or home for day and I spray their area with lysol <img src="i/expressions/face-icon-small-blush.gif" border="0"> if they work right by me and I do this for my desk area daily, I also have stopped touching handles, community phones keyboards etc without washign afterwards whcih helps.
ALso, if your #'s have dropped that much should you not be on IV's? I also get time off when on IV's so I woudl take that time off plus a couple days at end to get energy back, is htis an option for you? I work for a very large company so I do realize not everyone may have these abilities so I am just throwing ideas out there.
I hope you figure out what works for you and I am sorry your nurse sucks as that was really crappy of her but I do believe their are guidelines they have to go by for who can qualify and who cannot depending on lung functions etc but she very well could have went about it better
My employer covers me under FMLA (if there are 40 in your company they have to also cover you) anyway if I blow red on peak flow or feel somethign coming on I stay home for a day or two and do extra treatments and rest, I cannot tell you how many colds infections etc this has suppressed or averted for me ( I learned this from someone who worked with AIDS patients and could not come to work by mandate if they felt least bit sick and they noticed they got sick far less often if they stayed home day before they were actually sick--now if only we could get everyone at work to do this instead of spreading aroudn their junk!).
Also when I am at work I am germ crazy, if someone comes to work sick I wait until they go to lunch or home for day and I spray their area with lysol <img src="i/expressions/face-icon-small-blush.gif" border="0"> if they work right by me and I do this for my desk area daily, I also have stopped touching handles, community phones keyboards etc without washign afterwards whcih helps.
ALso, if your #'s have dropped that much should you not be on IV's? I also get time off when on IV's so I woudl take that time off plus a couple days at end to get energy back, is htis an option for you? I work for a very large company so I do realize not everyone may have these abilities so I am just throwing ideas out there.
I hope you figure out what works for you and I am sorry your nurse sucks as that was really crappy of her but I do believe their are guidelines they have to go by for who can qualify and who cannot depending on lung functions etc but she very well could have went about it better
mom2lillian
New member
Perhaps if you are not able to or ready to go to part time or get SSI can you use some FMLA time?
My employer covers me under FMLA (if there are 40 in your company they have to also cover you) anyway if I blow red on peak flow or feel somethign coming on I stay home for a day or two and do extra treatments and rest, I cannot tell you how many colds infections etc this has suppressed or averted for me ( I learned this from someone who worked with AIDS patients and could not come to work by mandate if they felt least bit sick and they noticed they got sick far less often if they stayed home day before they were actually sick--now if only we could get everyone at work to do this instead of spreading aroudn their junk!).
Also when I am at work I am germ crazy, if someone comes to work sick I wait until they go to lunch or home for day and I spray their area with lysol <img src="i/expressions/face-icon-small-blush.gif" border="0"> if they work right by me and I do this for my desk area daily, I also have stopped touching handles, community phones keyboards etc without washign afterwards whcih helps.
ALso, if your #'s have dropped that much should you not be on IV's? I also get time off when on IV's so I woudl take that time off plus a couple days at end to get energy back, is htis an option for you? I work for a very large company so I do realize not everyone may have these abilities so I am just throwing ideas out there.
I hope you figure out what works for you and I am sorry your nurse sucks as that was really crappy of her but I do believe their are guidelines they have to go by for who can qualify and who cannot depending on lung functions etc but she very well could have went about it better
My employer covers me under FMLA (if there are 40 in your company they have to also cover you) anyway if I blow red on peak flow or feel somethign coming on I stay home for a day or two and do extra treatments and rest, I cannot tell you how many colds infections etc this has suppressed or averted for me ( I learned this from someone who worked with AIDS patients and could not come to work by mandate if they felt least bit sick and they noticed they got sick far less often if they stayed home day before they were actually sick--now if only we could get everyone at work to do this instead of spreading aroudn their junk!).
Also when I am at work I am germ crazy, if someone comes to work sick I wait until they go to lunch or home for day and I spray their area with lysol <img src="i/expressions/face-icon-small-blush.gif" border="0"> if they work right by me and I do this for my desk area daily, I also have stopped touching handles, community phones keyboards etc without washign afterwards whcih helps.
ALso, if your #'s have dropped that much should you not be on IV's? I also get time off when on IV's so I woudl take that time off plus a couple days at end to get energy back, is htis an option for you? I work for a very large company so I do realize not everyone may have these abilities so I am just throwing ideas out there.
I hope you figure out what works for you and I am sorry your nurse sucks as that was really crappy of her but I do believe their are guidelines they have to go by for who can qualify and who cannot depending on lung functions etc but she very well could have went about it better
would your company consider a career break, we can do this at our company. At least you would be at home, and if your health improves and your son goes to school, then you could return. In the meantime you could pick up a part-time job or even one working from home. As a father who works nights, I love my time with my kids in the mornings before the wife comes back from her 4 hours at work twice a week.