How do you AFFORD children when you have CF?

[fondreflections]

I can understand how non-CF parents can afford to have children with CF. Moreso, if both parents work. Plus, you have better insurance coverage for the child while under 18 or whatever it is.

However, how can CF parents make ends meet with kids? Moreso, if you have a child also affected with CF. I'm guessing either you have a lot of money or you get lots of state assistance. I'm not trying to offend or anything, but I can't help to wonder.

Jake and I are doing 'okay'. However, I only have Capital Blue Cross. I put out about $400.00 every 3 months on medications, and I'm not on that many. We don't qualify for any state assistance which would help with some of those copays. My enzymes alone are $125.00 every 3 months.

I no longer work but do get Social Security. For those of you that know, the given Social Security amount isn't much to brag about. Jake carries the burden which makes me feel like a 'piece of crap' half the time. I find odd jobs for maybe a 1 month, then nothing for awhile. I dare not find a real job with Social Security for 2 main reasons. One - I wouldn't last too long before ending up in the hospital. My MRSA would get out of control. Two - I couldn't afford to have my Social Security cut off. Without that, the arguments might start.

So really...How can you afford it? I have no problem using the state to afford a child since I feel they have made enough money on Jake and I over the years. Plus, the state would rather give drug-addicted people help vs. people with CF (a disease that I couldn't prevent). I hate insurance companies and everything that has to do with them. But I can't see how a family could make ends meet without some kind of assistance. I just don't see it...

 

[fondreflections]

I can understand how non-CF parents can afford to have children with CF. Moreso, if both parents work. Plus, you have better insurance coverage for the child while under 18 or whatever it is.

However, how can CF parents make ends meet with kids? Moreso, if you have a child also affected with CF. I'm guessing either you have a lot of money or you get lots of state assistance. I'm not trying to offend or anything, but I can't help to wonder.

Jake and I are doing 'okay'. However, I only have Capital Blue Cross. I put out about $400.00 every 3 months on medications, and I'm not on that many. We don't qualify for any state assistance which would help with some of those copays. My enzymes alone are $125.00 every 3 months.

I no longer work but do get Social Security. For those of you that know, the given Social Security amount isn't much to brag about. Jake carries the burden which makes me feel like a 'piece of crap' half the time. I find odd jobs for maybe a 1 month, then nothing for awhile. I dare not find a real job with Social Security for 2 main reasons. One - I wouldn't last too long before ending up in the hospital. My MRSA would get out of control. Two - I couldn't afford to have my Social Security cut off. Without that, the arguments might start.

So really...How can you afford it? I have no problem using the state to afford a child since I feel they have made enough money on Jake and I over the years. Plus, the state would rather give drug-addicted people help vs. people with CF (a disease that I couldn't prevent). I hate insurance companies and everything that has to do with them. But I can't see how a family could make ends meet without some kind of assistance. I just don't see it...

 

[fondreflections]

I can understand how non-CF parents can afford to have children with CF. Moreso, if both parents work. Plus, you have better insurance coverage for the child while under 18 or whatever it is.

However, how can CF parents make ends meet with kids? Moreso, if you have a child also affected with CF. I'm guessing either you have a lot of money or you get lots of state assistance. I'm not trying to offend or anything, but I can't help to wonder.

Jake and I are doing 'okay'. However, I only have Capital Blue Cross. I put out about $400.00 every 3 months on medications, and I'm not on that many. We don't qualify for any state assistance which would help with some of those copays. My enzymes alone are $125.00 every 3 months.

I no longer work but do get Social Security. For those of you that know, the given Social Security amount isn't much to brag about. Jake carries the burden which makes me feel like a 'piece of crap' half the time. I find odd jobs for maybe a 1 month, then nothing for awhile. I dare not find a real job with Social Security for 2 main reasons. One - I wouldn't last too long before ending up in the hospital. My MRSA would get out of control. Two - I couldn't afford to have my Social Security cut off. Without that, the arguments might start.

So really...How can you afford it? I have no problem using the state to afford a child since I feel they have made enough money on Jake and I over the years. Plus, the state would rather give drug-addicted people help vs. people with CF (a disease that I couldn't prevent). I hate insurance companies and everything that has to do with them. But I can't see how a family could make ends meet without some kind of assistance. I just don't see it...

 

[fondreflections]

I can understand how non-CF parents can afford to have children with CF. Moreso, if both parents work. Plus, you have better insurance coverage for the child while under 18 or whatever it is.

However, how can CF parents make ends meet with kids? Moreso, if you have a child also affected with CF. I'm guessing either you have a lot of money or you get lots of state assistance. I'm not trying to offend or anything, but I can't help to wonder.

Jake and I are doing 'okay'. However, I only have Capital Blue Cross. I put out about $400.00 every 3 months on medications, and I'm not on that many. We don't qualify for any state assistance which would help with some of those copays. My enzymes alone are $125.00 every 3 months.

I no longer work but do get Social Security. For those of you that know, the given Social Security amount isn't much to brag about. Jake carries the burden which makes me feel like a 'piece of crap' half the time. I find odd jobs for maybe a 1 month, then nothing for awhile. I dare not find a real job with Social Security for 2 main reasons. One - I wouldn't last too long before ending up in the hospital. My MRSA would get out of control. Two - I couldn't afford to have my Social Security cut off. Without that, the arguments might start.

So really...How can you afford it? I have no problem using the state to afford a child since I feel they have made enough money on Jake and I over the years. Plus, the state would rather give drug-addicted people help vs. people with CF (a disease that I couldn't prevent). I hate insurance companies and everything that has to do with them. But I can't see how a family could make ends meet without some kind of assistance. I just don't see it...

 

[fondreflections]

I can understand how non-CF parents can afford to have children with CF. Moreso, if both parents work. Plus, you have better insurance coverage for the child while under 18 or whatever it is.
<br />
<br />However, how can CF parents make ends meet with kids? Moreso, if you have a child also affected with CF. I'm guessing either you have a lot of money or you get lots of state assistance. I'm not trying to offend or anything, but I can't help to wonder.
<br />
<br />Jake and I are doing 'okay'. However, I only have Capital Blue Cross. I put out about $400.00 every 3 months on medications, and I'm not on that many. We don't qualify for any state assistance which would help with some of those copays. My enzymes alone are $125.00 every 3 months.
<br />
<br />I no longer work but do get Social Security. For those of you that know, the given Social Security amount isn't much to brag about. Jake carries the burden which makes me feel like a 'piece of crap' half the time. I find odd jobs for maybe a 1 month, then nothing for awhile. I dare not find a real job with Social Security for 2 main reasons. One - I wouldn't last too long before ending up in the hospital. My MRSA would get out of control. Two - I couldn't afford to have my Social Security cut off. Without that, the arguments might start.
<br />
<br />So really...How can you afford it? I have no problem using the state to afford a child since I feel they have made enough money on Jake and I over the years. Plus, the state would rather give drug-addicted people help vs. people with CF (a disease that I couldn't prevent). I hate insurance companies and everything that has to do with them. But I can't see how a family could make ends meet without some kind of assistance. I just don't see it...

 

[JazzysMom]

I think much does depend on the health benefits. Almost as much if not moreso then the income. My husband has a state job so his benefits are awesome.

I do have to say tho that even with that great coverage, the co pays add up. Life would be much different if our coverage wasnt as good.

We learned very quickly when I had to stop working how "the real world works" regarding $$$$$$ LOL

We went through hell & back for many years financially. I dont qualify for state aid as long as we are married. I do collect SSDI for Jazmine & myself which helps & fortunately made good $$ for many years while working. This, of course, boosts up what my SSDI is.

I have to also say that my Indemnity Policy for when I am in the hospital has really saved us & often let us embelish in things. It actually paid for my 40th birthday party.


This is the first time we have owned a brand new car. We were never in a position to buy new before. Our mortgage is extremely cheap because we lucked out on finding this house.

We were patient & careful when making any major decisions. We were cautious of spending ANY $$ including for groceries. The only thing that wasnt negotiable was my meds.

I do feel that priorities play a part. I had a friend (no CF) who truly felt that the internet was a NEED so financial counseling for her family didnt work.

Getting back to the basics is difficult, but often is the first step. Even then it might not be enough to balance the financial needs.

I also believe that some of us are just lucky!!!!!

 

[JazzysMom]

I think much does depend on the health benefits. Almost as much if not moreso then the income. My husband has a state job so his benefits are awesome.

I do have to say tho that even with that great coverage, the co pays add up. Life would be much different if our coverage wasnt as good.

We learned very quickly when I had to stop working how "the real world works" regarding $$$$$$ LOL

We went through hell & back for many years financially. I dont qualify for state aid as long as we are married. I do collect SSDI for Jazmine & myself which helps & fortunately made good $$ for many years while working. This, of course, boosts up what my SSDI is.

I have to also say that my Indemnity Policy for when I am in the hospital has really saved us & often let us embelish in things. It actually paid for my 40th birthday party.


This is the first time we have owned a brand new car. We were never in a position to buy new before. Our mortgage is extremely cheap because we lucked out on finding this house.

We were patient & careful when making any major decisions. We were cautious of spending ANY $$ including for groceries. The only thing that wasnt negotiable was my meds.

I do feel that priorities play a part. I had a friend (no CF) who truly felt that the internet was a NEED so financial counseling for her family didnt work.

Getting back to the basics is difficult, but often is the first step. Even then it might not be enough to balance the financial needs.

I also believe that some of us are just lucky!!!!!

 

[JazzysMom]

I think much does depend on the health benefits. Almost as much if not moreso then the income. My husband has a state job so his benefits are awesome.

I do have to say tho that even with that great coverage, the co pays add up. Life would be much different if our coverage wasnt as good.

We learned very quickly when I had to stop working how "the real world works" regarding $$$$$$ LOL

We went through hell & back for many years financially. I dont qualify for state aid as long as we are married. I do collect SSDI for Jazmine & myself which helps & fortunately made good $$ for many years while working. This, of course, boosts up what my SSDI is.

I have to also say that my Indemnity Policy for when I am in the hospital has really saved us & often let us embelish in things. It actually paid for my 40th birthday party.


This is the first time we have owned a brand new car. We were never in a position to buy new before. Our mortgage is extremely cheap because we lucked out on finding this house.

We were patient & careful when making any major decisions. We were cautious of spending ANY $$ including for groceries. The only thing that wasnt negotiable was my meds.

I do feel that priorities play a part. I had a friend (no CF) who truly felt that the internet was a NEED so financial counseling for her family didnt work.

Getting back to the basics is difficult, but often is the first step. Even then it might not be enough to balance the financial needs.

I also believe that some of us are just lucky!!!!!

 

[JazzysMom]

I think much does depend on the health benefits. Almost as much if not moreso then the income. My husband has a state job so his benefits are awesome.

I do have to say tho that even with that great coverage, the co pays add up. Life would be much different if our coverage wasnt as good.

We learned very quickly when I had to stop working how "the real world works" regarding $$$$$$ LOL

We went through hell & back for many years financially. I dont qualify for state aid as long as we are married. I do collect SSDI for Jazmine & myself which helps & fortunately made good $$ for many years while working. This, of course, boosts up what my SSDI is.

I have to also say that my Indemnity Policy for when I am in the hospital has really saved us & often let us embelish in things. It actually paid for my 40th birthday party.


This is the first time we have owned a brand new car. We were never in a position to buy new before. Our mortgage is extremely cheap because we lucked out on finding this house.

We were patient & careful when making any major decisions. We were cautious of spending ANY $$ including for groceries. The only thing that wasnt negotiable was my meds.

I do feel that priorities play a part. I had a friend (no CF) who truly felt that the internet was a NEED so financial counseling for her family didnt work.

Getting back to the basics is difficult, but often is the first step. Even then it might not be enough to balance the financial needs.

I also believe that some of us are just lucky!!!!!

 

[JazzysMom]

I think much does depend on the health benefits. Almost as much if not moreso then the income. My husband has a state job so his benefits are awesome.
<br />
<br />I do have to say tho that even with that great coverage, the co pays add up. Life would be much different if our coverage wasnt as good.
<br />
<br />We learned very quickly when I had to stop working how "the real world works" regarding $$$$$$ LOL
<br />
<br />We went through hell & back for many years financially. I dont qualify for state aid as long as we are married. I do collect SSDI for Jazmine & myself which helps & fortunately made good $$ for many years while working. This, of course, boosts up what my SSDI is.
<br />
<br />I have to also say that my Indemnity Policy for when I am in the hospital has really saved us & often let us embelish in things. It actually paid for my 40th birthday party.
<br />
<br />
<br />This is the first time we have owned a brand new car. We were never in a position to buy new before. Our mortgage is extremely cheap because we lucked out on finding this house.
<br />
<br />We were patient & careful when making any major decisions. We were cautious of spending ANY $$ including for groceries. The only thing that wasnt negotiable was my meds.
<br />
<br />I do feel that priorities play a part. I had a friend (no CF) who truly felt that the internet was a NEED so financial counseling for her family didnt work.
<br />
<br />Getting back to the basics is difficult, but often is the first step. Even then it might not be enough to balance the financial needs.
<br />
<br />I also believe that some of us are just lucky!!!!!
<br />
<br />
<br />
<br />
<br />
<br />

 

[fondreflections]

Melissa,

Thank you for your honesty!

Jake is the finance manager for a car dealership which can be a good thing or bad thing, depending how you look at it. We do watch everything we spend a single penny on and have close to no debt, not counting our car or mortgage.

However, Jake gets paid a salary and monthly commissions. The salary is nice because it's consistant. However if people aren't buying cars, then there isn't a great commission check at the end of the month...Right now and for a few months, people aren't buying cars due to the poor economy.

Our family deductible is $4,000!!! I swear I'm not lying. $2,000 for him, $2,000 for me. I'll even 'push back' my CF appointments by a month if I'm feeling alright because I know I'll have a bill on the way. I don't recall my last dental or vision checkups either. They aren't a priority so they don't get done. I don't need an extra bill. Then, you add the copays...

 

[fondreflections]

Melissa,

Thank you for your honesty!

Jake is the finance manager for a car dealership which can be a good thing or bad thing, depending how you look at it. We do watch everything we spend a single penny on and have close to no debt, not counting our car or mortgage.

However, Jake gets paid a salary and monthly commissions. The salary is nice because it's consistant. However if people aren't buying cars, then there isn't a great commission check at the end of the month...Right now and for a few months, people aren't buying cars due to the poor economy.

Our family deductible is $4,000!!! I swear I'm not lying. $2,000 for him, $2,000 for me. I'll even 'push back' my CF appointments by a month if I'm feeling alright because I know I'll have a bill on the way. I don't recall my last dental or vision checkups either. They aren't a priority so they don't get done. I don't need an extra bill. Then, you add the copays...

 

[fondreflections]

Melissa,

Thank you for your honesty!

Jake is the finance manager for a car dealership which can be a good thing or bad thing, depending how you look at it. We do watch everything we spend a single penny on and have close to no debt, not counting our car or mortgage.

However, Jake gets paid a salary and monthly commissions. The salary is nice because it's consistant. However if people aren't buying cars, then there isn't a great commission check at the end of the month...Right now and for a few months, people aren't buying cars due to the poor economy.

Our family deductible is $4,000!!! I swear I'm not lying. $2,000 for him, $2,000 for me. I'll even 'push back' my CF appointments by a month if I'm feeling alright because I know I'll have a bill on the way. I don't recall my last dental or vision checkups either. They aren't a priority so they don't get done. I don't need an extra bill. Then, you add the copays...

 

[fondreflections]

Melissa,

Thank you for your honesty!

Jake is the finance manager for a car dealership which can be a good thing or bad thing, depending how you look at it. We do watch everything we spend a single penny on and have close to no debt, not counting our car or mortgage.

However, Jake gets paid a salary and monthly commissions. The salary is nice because it's consistant. However if people aren't buying cars, then there isn't a great commission check at the end of the month...Right now and for a few months, people aren't buying cars due to the poor economy.

Our family deductible is $4,000!!! I swear I'm not lying. $2,000 for him, $2,000 for me. I'll even 'push back' my CF appointments by a month if I'm feeling alright because I know I'll have a bill on the way. I don't recall my last dental or vision checkups either. They aren't a priority so they don't get done. I don't need an extra bill. Then, you add the copays...

 

[fondreflections]

Melissa,
<br />
<br />Thank you for your honesty!
<br />
<br />Jake is the finance manager for a car dealership which can be a good thing or bad thing, depending how you look at it. We do watch everything we spend a single penny on and have close to no debt, not counting our car or mortgage.
<br />
<br />However, Jake gets paid a salary and monthly commissions. The salary is nice because it's consistant. However if people aren't buying cars, then there isn't a great commission check at the end of the month...Right now and for a few months, people aren't buying cars due to the poor economy.
<br />
<br />Our family deductible is $4,000!!! I swear I'm not lying. $2,000 for him, $2,000 for me. I'll even 'push back' my CF appointments by a month if I'm feeling alright because I know I'll have a bill on the way. I don't recall my last dental or vision checkups either. They aren't a priority so they don't get done. I don't need an extra bill. Then, you add the copays...

 

[tara]

I like to call CF my triplet child. Mostly because at the twins age, CF actually takes more hours out of my day than they do! But after you posed this question, I realized CF also costs more than the twins do.

I don't really pinch pennies, but I also don't overspend ridiculously (I still cut coupons and eat in!) Let's just say I'm a cheapskate by nature. My husband has a full time job and so did I until I got pregnant. Now I collect SSDI because my FEV1 was borderline for SSDI qualifications at the time, now it's slightly below at my best.

I do think I'm fortunate, however things can change in an instant, like two years ago when DH lost his job due to layoffs. There we were with a mortgage, a car payment, 18 month old twins and no income. (at the time SSDI was still in limbo for me) Once again, fortunately the first interview DH had turned out to be a great job where he remains to this day.

Honestly, like Mel said, I think a lot of the cost has to do with the type of health insurance you have/qualify for. In california there is a state program called Genetically Handicapped Persons Program (GHPP) and that, combined with MediCal would offer low to no cost health insurance for CFers in this state. It is my understanding, to be eligible for that combo you do need to have very little assets and income, but at least it's a safety net in the state I live in. I know it's there if I need it.

I don't really look at having kids as an added expense, it is just an expense. There are ways to cut corners. You could go nuts trying to afford every little gadget you think you need for an infant but when it comes down to it they just need to be clean, loved and fed. CF aside, a lot of the toys we have and activities we do are luxuries that would/could be cut from the budget if need be.

 

[tara]

I like to call CF my triplet child. Mostly because at the twins age, CF actually takes more hours out of my day than they do! But after you posed this question, I realized CF also costs more than the twins do.

I don't really pinch pennies, but I also don't overspend ridiculously (I still cut coupons and eat in!) Let's just say I'm a cheapskate by nature. My husband has a full time job and so did I until I got pregnant. Now I collect SSDI because my FEV1 was borderline for SSDI qualifications at the time, now it's slightly below at my best.

I do think I'm fortunate, however things can change in an instant, like two years ago when DH lost his job due to layoffs. There we were with a mortgage, a car payment, 18 month old twins and no income. (at the time SSDI was still in limbo for me) Once again, fortunately the first interview DH had turned out to be a great job where he remains to this day.

Honestly, like Mel said, I think a lot of the cost has to do with the type of health insurance you have/qualify for. In california there is a state program called Genetically Handicapped Persons Program (GHPP) and that, combined with MediCal would offer low to no cost health insurance for CFers in this state. It is my understanding, to be eligible for that combo you do need to have very little assets and income, but at least it's a safety net in the state I live in. I know it's there if I need it.

I don't really look at having kids as an added expense, it is just an expense. There are ways to cut corners. You could go nuts trying to afford every little gadget you think you need for an infant but when it comes down to it they just need to be clean, loved and fed. CF aside, a lot of the toys we have and activities we do are luxuries that would/could be cut from the budget if need be.

 

[tara]

I like to call CF my triplet child. Mostly because at the twins age, CF actually takes more hours out of my day than they do! But after you posed this question, I realized CF also costs more than the twins do.

I don't really pinch pennies, but I also don't overspend ridiculously (I still cut coupons and eat in!) Let's just say I'm a cheapskate by nature. My husband has a full time job and so did I until I got pregnant. Now I collect SSDI because my FEV1 was borderline for SSDI qualifications at the time, now it's slightly below at my best.

I do think I'm fortunate, however things can change in an instant, like two years ago when DH lost his job due to layoffs. There we were with a mortgage, a car payment, 18 month old twins and no income. (at the time SSDI was still in limbo for me) Once again, fortunately the first interview DH had turned out to be a great job where he remains to this day.

Honestly, like Mel said, I think a lot of the cost has to do with the type of health insurance you have/qualify for. In california there is a state program called Genetically Handicapped Persons Program (GHPP) and that, combined with MediCal would offer low to no cost health insurance for CFers in this state. It is my understanding, to be eligible for that combo you do need to have very little assets and income, but at least it's a safety net in the state I live in. I know it's there if I need it.

I don't really look at having kids as an added expense, it is just an expense. There are ways to cut corners. You could go nuts trying to afford every little gadget you think you need for an infant but when it comes down to it they just need to be clean, loved and fed. CF aside, a lot of the toys we have and activities we do are luxuries that would/could be cut from the budget if need be.

 

[tara]

I like to call CF my triplet child. Mostly because at the twins age, CF actually takes more hours out of my day than they do! But after you posed this question, I realized CF also costs more than the twins do.

I don't really pinch pennies, but I also don't overspend ridiculously (I still cut coupons and eat in!) Let's just say I'm a cheapskate by nature. My husband has a full time job and so did I until I got pregnant. Now I collect SSDI because my FEV1 was borderline for SSDI qualifications at the time, now it's slightly below at my best.

I do think I'm fortunate, however things can change in an instant, like two years ago when DH lost his job due to layoffs. There we were with a mortgage, a car payment, 18 month old twins and no income. (at the time SSDI was still in limbo for me) Once again, fortunately the first interview DH had turned out to be a great job where he remains to this day.

Honestly, like Mel said, I think a lot of the cost has to do with the type of health insurance you have/qualify for. In california there is a state program called Genetically Handicapped Persons Program (GHPP) and that, combined with MediCal would offer low to no cost health insurance for CFers in this state. It is my understanding, to be eligible for that combo you do need to have very little assets and income, but at least it's a safety net in the state I live in. I know it's there if I need it.

I don't really look at having kids as an added expense, it is just an expense. There are ways to cut corners. You could go nuts trying to afford every little gadget you think you need for an infant but when it comes down to it they just need to be clean, loved and fed. CF aside, a lot of the toys we have and activities we do are luxuries that would/could be cut from the budget if need be.

 

[tara]

I like to call CF my triplet child. Mostly because at the twins age, CF actually takes more hours out of my day than they do! But after you posed this question, I realized CF also costs more than the twins do.
<br />
<br />I don't really pinch pennies, but I also don't overspend ridiculously (I still cut coupons and eat in!) Let's just say I'm a cheapskate by nature. My husband has a full time job and so did I until I got pregnant. Now I collect SSDI because my FEV1 was borderline for SSDI qualifications at the time, now it's slightly below at my best.
<br />
<br />I do think I'm fortunate, however things can change in an instant, like two years ago when DH lost his job due to layoffs. There we were with a mortgage, a car payment, 18 month old twins and no income. (at the time SSDI was still in limbo for me) Once again, fortunately the first interview DH had turned out to be a great job where he remains to this day.
<br />
<br />Honestly, like Mel said, I think a lot of the cost has to do with the type of health insurance you have/qualify for. In california there is a state program called Genetically Handicapped Persons Program (GHPP) and that, combined with MediCal would offer low to no cost health insurance for CFers in this state. It is my understanding, to be eligible for that combo you do need to have very little assets and income, but at least it's a safety net in the state I live in. I know it's there if I need it.
<br />
<br />I don't really look at having kids as an added expense, it is just an expense. There are ways to cut corners. You could go nuts trying to afford every little gadget you think you need for an infant but when it comes down to it they just need to be clean, loved and fed. CF aside, a lot of the toys we have and activities we do are luxuries that would/could be cut from the budget if need be.
<br />
<br />