Extraordinary Expenses

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bittyhorse23

New member
This is a GREAT list! I don't have anything else to add!

I wanted to say SaltyandSweet it is NOT a stretch for clothes. Over the years (and even after a few months) I have to buy new shirts because of the barrel chest affect. Shirts that fit me a few months ago are now way too tight in the chest. Mainly work clothes so I have to fork more money out to but new stuff that doesn't make me look like I am trying to seduce my way into a raise!!!! And I have a range of pants to fit me during my sick and healthy months!
 
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bittyhorse23

New member
This is a GREAT list! I don't have anything else to add!

I wanted to say SaltyandSweet it is NOT a stretch for clothes. Over the years (and even after a few months) I have to buy new shirts because of the barrel chest affect. Shirts that fit me a few months ago are now way too tight in the chest. Mainly work clothes so I have to fork more money out to but new stuff that doesn't make me look like I am trying to seduce my way into a raise!!!! And I have a range of pants to fit me during my sick and healthy months!
 
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bittyhorse23

New member
This is a GREAT list! I don't have anything else to add!

I wanted to say SaltyandSweet it is NOT a stretch for clothes. Over the years (and even after a few months) I have to buy new shirts because of the barrel chest affect. Shirts that fit me a few months ago are now way too tight in the chest. Mainly work clothes so I have to fork more money out to but new stuff that doesn't make me look like I am trying to seduce my way into a raise!!!! And I have a range of pants to fit me during my sick and healthy months!
 
B

bittyhorse23

New member
This is a GREAT list! I don't have anything else to add!

I wanted to say SaltyandSweet it is NOT a stretch for clothes. Over the years (and even after a few months) I have to buy new shirts because of the barrel chest affect. Shirts that fit me a few months ago are now way too tight in the chest. Mainly work clothes so I have to fork more money out to but new stuff that doesn't make me look like I am trying to seduce my way into a raise!!!! And I have a range of pants to fit me during my sick and healthy months!
 
B

bittyhorse23

New member
This is a GREAT list! I don't have anything else to add!
<br />
<br />I wanted to say SaltyandSweet it is NOT a stretch for clothes. Over the years (and even after a few months) I have to buy new shirts because of the barrel chest affect. Shirts that fit me a few months ago are now way too tight in the chest. Mainly work clothes so I have to fork more money out to but new stuff that doesn't make me look like I am trying to seduce my way into a raise!!!! And I have a range of pants to fit me during my sick and healthy months!
 
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momtoCory

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Sevenstars</b></i>

- Juice or a juicer. I buy a lot of the 'superfood' Naked juices because they have so many good vitamins, protein, iron etc. Those things are )(#$*#ing expensive! 3$ for a little 16oz bottle.




We love those......It is the only "fruit" I can get Cory to drink
 
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momtoCory

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Sevenstars</b></i>

- Juice or a juicer. I buy a lot of the 'superfood' Naked juices because they have so many good vitamins, protein, iron etc. Those things are )(#$*#ing expensive! 3$ for a little 16oz bottle.




We love those......It is the only "fruit" I can get Cory to drink
 
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momtoCory

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Sevenstars</b></i>

- Juice or a juicer. I buy a lot of the 'superfood' Naked juices because they have so many good vitamins, protein, iron etc. Those things are )(#$*#ing expensive! 3$ for a little 16oz bottle.




We love those......It is the only "fruit" I can get Cory to drink
 
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momtoCory

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Sevenstars</b></i>

- Juice or a juicer. I buy a lot of the 'superfood' Naked juices because they have so many good vitamins, protein, iron etc. Those things are )(#$*#ing expensive! 3$ for a little 16oz bottle.




We love those......It is the only "fruit" I can get Cory to drink
 
M

momtoCory

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Sevenstars</b></i>
<br />
<br />- Juice or a juicer. I buy a lot of the 'superfood' Naked juices because they have so many good vitamins, protein, iron etc. Those things are )(#$*#ing expensive! 3$ for a little 16oz bottle.
<br />
<br />
<br />
<br />
<br />We love those......It is the only "fruit" I can get Cory to drink
 
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Ratatosk

Administrator
Staff member
Oh and realize again that this is a personal choice... But our CF clinic in the City is out of network and because our local clinic has a recently "accreditted" CF clinic and feel their care is adequate -- they won't refer us. So we pay a higher percentage of the charges, some things aren't covered because we go out of network...
 
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Ratatosk

Administrator
Staff member
Oh and realize again that this is a personal choice... But our CF clinic in the City is out of network and because our local clinic has a recently "accreditted" CF clinic and feel their care is adequate -- they won't refer us. So we pay a higher percentage of the charges, some things aren't covered because we go out of network...
 
R

Ratatosk

Administrator
Staff member
Oh and realize again that this is a personal choice... But our CF clinic in the City is out of network and because our local clinic has a recently "accreditted" CF clinic and feel their care is adequate -- they won't refer us. So we pay a higher percentage of the charges, some things aren't covered because we go out of network...
 
R

Ratatosk

Administrator
Staff member
Oh and realize again that this is a personal choice... But our CF clinic in the City is out of network and because our local clinic has a recently "accreditted" CF clinic and feel their care is adequate -- they won't refer us. So we pay a higher percentage of the charges, some things aren't covered because we go out of network...
 
R

Ratatosk

Administrator
Staff member
Oh and realize again that this is a personal choice... But our CF clinic in the City is out of network and because our local clinic has a recently "accreditted" CF clinic and feel their care is adequate -- they won't refer us. So we pay a higher percentage of the charges, some things aren't covered because we go out of network...
 
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SaltyAndSweet

New member
Wuffles, Time = money. I totally agree that time off of work is an extraordinary expense for us. It has been driving me crazy that I have to use up my vacation time for doctors visits and sick time off, which leaves me with zero paid "vacation" time and sometimes I have to take unpaid leave just because of CF. (I know most of us are in this boat).

My healthy friends are off on a Caribbean cruise right now, and another will be headed to Hawaii for a week. My coworker just got back from a week vacation to the California beaches. I make more money than any of them. BUT because of CF, I have no vacation time to use and not enough money left in the bank to go with them.

I was thinking of starting another topic about the things we have to give up because of CF, like vacations. Ratatosk posted a comment about not HAVING to own a dog, but it is something that MOST families have. I wouldn't consider a dog a luxury in that way. Having to do without, just because of CF, is NOT fair. I don't want it to get too depressing though. Should I start a thread on this?

Reminder that I am making a list of these items to use as an educational tool, possibly for fund raising events and other advocacy/education purposes. We could use these lists to show, and "prove" with numbers, the things that we HAVE to have for medical reasons, including what HELPS us cope with our CF, and what we HAVE to go without because of CF.

Thanks to all for your comments!
~aspen
 
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SaltyAndSweet

New member
Wuffles, Time = money. I totally agree that time off of work is an extraordinary expense for us. It has been driving me crazy that I have to use up my vacation time for doctors visits and sick time off, which leaves me with zero paid "vacation" time and sometimes I have to take unpaid leave just because of CF. (I know most of us are in this boat).

My healthy friends are off on a Caribbean cruise right now, and another will be headed to Hawaii for a week. My coworker just got back from a week vacation to the California beaches. I make more money than any of them. BUT because of CF, I have no vacation time to use and not enough money left in the bank to go with them.

I was thinking of starting another topic about the things we have to give up because of CF, like vacations. Ratatosk posted a comment about not HAVING to own a dog, but it is something that MOST families have. I wouldn't consider a dog a luxury in that way. Having to do without, just because of CF, is NOT fair. I don't want it to get too depressing though. Should I start a thread on this?

Reminder that I am making a list of these items to use as an educational tool, possibly for fund raising events and other advocacy/education purposes. We could use these lists to show, and "prove" with numbers, the things that we HAVE to have for medical reasons, including what HELPS us cope with our CF, and what we HAVE to go without because of CF.

Thanks to all for your comments!
~aspen
 
S

SaltyAndSweet

New member
Wuffles, Time = money. I totally agree that time off of work is an extraordinary expense for us. It has been driving me crazy that I have to use up my vacation time for doctors visits and sick time off, which leaves me with zero paid "vacation" time and sometimes I have to take unpaid leave just because of CF. (I know most of us are in this boat).

My healthy friends are off on a Caribbean cruise right now, and another will be headed to Hawaii for a week. My coworker just got back from a week vacation to the California beaches. I make more money than any of them. BUT because of CF, I have no vacation time to use and not enough money left in the bank to go with them.

I was thinking of starting another topic about the things we have to give up because of CF, like vacations. Ratatosk posted a comment about not HAVING to own a dog, but it is something that MOST families have. I wouldn't consider a dog a luxury in that way. Having to do without, just because of CF, is NOT fair. I don't want it to get too depressing though. Should I start a thread on this?

Reminder that I am making a list of these items to use as an educational tool, possibly for fund raising events and other advocacy/education purposes. We could use these lists to show, and "prove" with numbers, the things that we HAVE to have for medical reasons, including what HELPS us cope with our CF, and what we HAVE to go without because of CF.

Thanks to all for your comments!
~aspen
 
S

SaltyAndSweet

New member
Wuffles, Time = money. I totally agree that time off of work is an extraordinary expense for us. It has been driving me crazy that I have to use up my vacation time for doctors visits and sick time off, which leaves me with zero paid "vacation" time and sometimes I have to take unpaid leave just because of CF. (I know most of us are in this boat).

My healthy friends are off on a Caribbean cruise right now, and another will be headed to Hawaii for a week. My coworker just got back from a week vacation to the California beaches. I make more money than any of them. BUT because of CF, I have no vacation time to use and not enough money left in the bank to go with them.

I was thinking of starting another topic about the things we have to give up because of CF, like vacations. Ratatosk posted a comment about not HAVING to own a dog, but it is something that MOST families have. I wouldn't consider a dog a luxury in that way. Having to do without, just because of CF, is NOT fair. I don't want it to get too depressing though. Should I start a thread on this?

Reminder that I am making a list of these items to use as an educational tool, possibly for fund raising events and other advocacy/education purposes. We could use these lists to show, and "prove" with numbers, the things that we HAVE to have for medical reasons, including what HELPS us cope with our CF, and what we HAVE to go without because of CF.

Thanks to all for your comments!
~aspen
 
S

SaltyAndSweet

New member
Wuffles, Time = money. I totally agree that time off of work is an extraordinary expense for us. It has been driving me crazy that I have to use up my vacation time for doctors visits and sick time off, which leaves me with zero paid "vacation" time and sometimes I have to take unpaid leave just because of CF. (I know most of us are in this boat).
<br />
<br />My healthy friends are off on a Caribbean cruise right now, and another will be headed to Hawaii for a week. My coworker just got back from a week vacation to the California beaches. I make more money than any of them. BUT because of CF, I have no vacation time to use and not enough money left in the bank to go with them.
<br />
<br />I was thinking of starting another topic about the things we have to give up because of CF, like vacations. Ratatosk posted a comment about not HAVING to own a dog, but it is something that MOST families have. I wouldn't consider a dog a luxury in that way. Having to do without, just because of CF, is NOT fair. I don't want it to get too depressing though. Should I start a thread on this?
<br />
<br />Reminder that I am making a list of these items to use as an educational tool, possibly for fund raising events and other advocacy/education purposes. We could use these lists to show, and "prove" with numbers, the things that we HAVE to have for medical reasons, including what HELPS us cope with our CF, and what we HAVE to go without because of CF.
<br />
<br />Thanks to all for your comments!
<br />~aspen
 
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