Need help overcoming guilt...

[TonyaH]

Hi Em,

I feel so badly that you are feeling this way. If any of the people making you feel this way had to spend even one day with the knowledge that their child had an incurable disease, they would change their tune in a heartbeat. Unfortunately/thankfully, they will not know what it is like to deal with the reality of CF.

Lauren, (lightnlife) has some very good information about dealing with an "invisible disease". Sadly, even when there are symptoms, people still don't see the severity of CF. It is an easy disease to hide. This past fall when my son was in the hospital, friends just did not understand the weight of the issue. To them, he has a cough. To them, he's skinny. To them, he takes enzymes that "make him better".

I would question wether these people are behaving this way because they don't understand, or because they do not want to understand? Is it possible that they don't want to believe Abby could have CF and don't know how to deal with it?

 

[TonyaH]

Hi Em,

I feel so badly that you are feeling this way. If any of the people making you feel this way had to spend even one day with the knowledge that their child had an incurable disease, they would change their tune in a heartbeat. Unfortunately/thankfully, they will not know what it is like to deal with the reality of CF.

Lauren, (lightnlife) has some very good information about dealing with an "invisible disease". Sadly, even when there are symptoms, people still don't see the severity of CF. It is an easy disease to hide. This past fall when my son was in the hospital, friends just did not understand the weight of the issue. To them, he has a cough. To them, he's skinny. To them, he takes enzymes that "make him better".

I would question wether these people are behaving this way because they don't understand, or because they do not want to understand? Is it possible that they don't want to believe Abby could have CF and don't know how to deal with it?

 

[TonyaH]

Hi Em,

I feel so badly that you are feeling this way. If any of the people making you feel this way had to spend even one day with the knowledge that their child had an incurable disease, they would change their tune in a heartbeat. Unfortunately/thankfully, they will not know what it is like to deal with the reality of CF.

Lauren, (lightnlife) has some very good information about dealing with an "invisible disease". Sadly, even when there are symptoms, people still don't see the severity of CF. It is an easy disease to hide. This past fall when my son was in the hospital, friends just did not understand the weight of the issue. To them, he has a cough. To them, he's skinny. To them, he takes enzymes that "make him better".

I would question wether these people are behaving this way because they don't understand, or because they do not want to understand? Is it possible that they don't want to believe Abby could have CF and don't know how to deal with it?

 

[TonyaH]

Hi Em,

I feel so badly that you are feeling this way. If any of the people making you feel this way had to spend even one day with the knowledge that their child had an incurable disease, they would change their tune in a heartbeat. Unfortunately/thankfully, they will not know what it is like to deal with the reality of CF.

Lauren, (lightnlife) has some very good information about dealing with an "invisible disease". Sadly, even when there are symptoms, people still don't see the severity of CF. It is an easy disease to hide. This past fall when my son was in the hospital, friends just did not understand the weight of the issue. To them, he has a cough. To them, he's skinny. To them, he takes enzymes that "make him better".

I would question wether these people are behaving this way because they don't understand, or because they do not want to understand? Is it possible that they don't want to believe Abby could have CF and don't know how to deal with it?

 

[TonyaH]

Hi Em,

I feel so badly that you are feeling this way. If any of the people making you feel this way had to spend even one day with the knowledge that their child had an incurable disease, they would change their tune in a heartbeat. Unfortunately/thankfully, they will not know what it is like to deal with the reality of CF.

Lauren, (lightnlife) has some very good information about dealing with an "invisible disease". Sadly, even when there are symptoms, people still don't see the severity of CF. It is an easy disease to hide. This past fall when my son was in the hospital, friends just did not understand the weight of the issue. To them, he has a cough. To them, he's skinny. To them, he takes enzymes that "make him better".

I would question wether these people are behaving this way because they don't understand, or because they do not want to understand? Is it possible that they don't want to believe Abby could have CF and don't know how to deal with it?

 

[AbbysMama]

Thanks Heather and Tonya. The issues now lie more with co-workers and friends who don't get it. I've decided to let-go of them ever getting it (easier said than done, because I'm more of a control freak than I'd like to admit). I'm so glad to know that there are folks on here who understand.

Thanks for giving me some perspective about what I can do to help future generations of CF'ers.

I have a new goal: To keep my daughter as healthy as I can for as long as I can AND to promote CF awareness through fundraising endeavors.

THANK YOU. I feel better.

Em

 

[AbbysMama]

Thanks Heather and Tonya. The issues now lie more with co-workers and friends who don't get it. I've decided to let-go of them ever getting it (easier said than done, because I'm more of a control freak than I'd like to admit). I'm so glad to know that there are folks on here who understand.

Thanks for giving me some perspective about what I can do to help future generations of CF'ers.

I have a new goal: To keep my daughter as healthy as I can for as long as I can AND to promote CF awareness through fundraising endeavors.

THANK YOU. I feel better.

Em

 

[AbbysMama]

Thanks Heather and Tonya. The issues now lie more with co-workers and friends who don't get it. I've decided to let-go of them ever getting it (easier said than done, because I'm more of a control freak than I'd like to admit). I'm so glad to know that there are folks on here who understand.

Thanks for giving me some perspective about what I can do to help future generations of CF'ers.

I have a new goal: To keep my daughter as healthy as I can for as long as I can AND to promote CF awareness through fundraising endeavors.

THANK YOU. I feel better.

Em

 

[AbbysMama]

Thanks Heather and Tonya. The issues now lie more with co-workers and friends who don't get it. I've decided to let-go of them ever getting it (easier said than done, because I'm more of a control freak than I'd like to admit). I'm so glad to know that there are folks on here who understand.

Thanks for giving me some perspective about what I can do to help future generations of CF'ers.

I have a new goal: To keep my daughter as healthy as I can for as long as I can AND to promote CF awareness through fundraising endeavors.

THANK YOU. I feel better.

Em

 

[AbbysMama]

Thanks Heather and Tonya. The issues now lie more with co-workers and friends who don't get it. I've decided to let-go of them ever getting it (easier said than done, because I'm more of a control freak than I'd like to admit). I'm so glad to know that there are folks on here who understand.

Thanks for giving me some perspective about what I can do to help future generations of CF'ers.

I have a new goal: To keep my daughter as healthy as I can for as long as I can AND to promote CF awareness through fundraising endeavors.

THANK YOU. I feel better.

Em

 

[dyza]

I think you are doing a fantastic job in keeping her healthy, long may it continue.

Heres another way to put it to any doubters. Ask them why they brush their teeth when their teeth look so healthy....its all about preventative measures.

Craig

 

[dyza]

I think you are doing a fantastic job in keeping her healthy, long may it continue.

Heres another way to put it to any doubters. Ask them why they brush their teeth when their teeth look so healthy....its all about preventative measures.

Craig

 

[dyza]

I think you are doing a fantastic job in keeping her healthy, long may it continue.

Heres another way to put it to any doubters. Ask them why they brush their teeth when their teeth look so healthy....its all about preventative measures.

Craig

 

[dyza]

I think you are doing a fantastic job in keeping her healthy, long may it continue.

Heres another way to put it to any doubters. Ask them why they brush their teeth when their teeth look so healthy....its all about preventative measures.

Craig

 

[dyza]

I think you are doing a fantastic job in keeping her healthy, long may it continue.

Heres another way to put it to any doubters. Ask them why they brush their teeth when their teeth look so healthy....its all about preventative measures.

Craig

 

[Ratatosk]

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

Thanks Heather and Tonya. The issues now lie more with co-workers and friends who don't get it. I've decided to let-go of them ever getting it (easier said than done, because I'm more of a control freak than I'd like to admit). I'm so glad to know that there are folks on here who understand.
Em</end quote></div>

When DS was diagnosed, several well meaning relatives kept telling us "maybe it'll be a mild case" and I was crushed when we asked his CF doctor about that and were told there's not such thing. CF is a progressive dieasee and even though DS's symptoms are mainly digestive eventually his lungs WILL be affected.

Coworkers and family members just don't get it. I cringe when I hear the accusatory "he doesn't look sick". DH pretty much tells the doubters "well, gee, I guess the genetic test results from Mayo were wrong. Or stresses how HARD we work to keep DS healthy" -- 3 half hour vest/cpt treatments per day, numerous medications, nebulized meds... Just ignore them. It used to bug me more, but now I'm PROUD at what we're able to do. Prior to DS's birth, I used to think I was so busy with work, working out, socializing --- my coworkers complain about a $55 copay or waking up at 4:30 in the morning ONCE in awhile. Heck, I just paid a $602 copay (tobi, etc) I get up at 5:30 every morning -- walk in my shoes people <img src="i/expressions/face-icon-small-smile.gif" border="0">

As for asking people to donate... You're asking people to support the CFF for vital research for treatments and medications. Every year I send out emails and letters asking for donations for great strides. I get very little support from most of my coworkers -- a few support me and I support them with their causes -- relay for life, diabetes. We all have our causes -- prior to DS' birth mine were my university alumni association, humane society and my neighbors' causes -- American Heart Association & Diabetes. Nowdays, we primarily donate to the CFF, the U gets a MUCH smaller donation and I only support other causes if someone comes and personally asks for a donation -- friends, coworkers, neighbors...

 

[Ratatosk]

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

Thanks Heather and Tonya. The issues now lie more with co-workers and friends who don't get it. I've decided to let-go of them ever getting it (easier said than done, because I'm more of a control freak than I'd like to admit). I'm so glad to know that there are folks on here who understand.
Em</end quote></div>

When DS was diagnosed, several well meaning relatives kept telling us "maybe it'll be a mild case" and I was crushed when we asked his CF doctor about that and were told there's not such thing. CF is a progressive dieasee and even though DS's symptoms are mainly digestive eventually his lungs WILL be affected.

Coworkers and family members just don't get it. I cringe when I hear the accusatory "he doesn't look sick". DH pretty much tells the doubters "well, gee, I guess the genetic test results from Mayo were wrong. Or stresses how HARD we work to keep DS healthy" -- 3 half hour vest/cpt treatments per day, numerous medications, nebulized meds... Just ignore them. It used to bug me more, but now I'm PROUD at what we're able to do. Prior to DS's birth, I used to think I was so busy with work, working out, socializing --- my coworkers complain about a $55 copay or waking up at 4:30 in the morning ONCE in awhile. Heck, I just paid a $602 copay (tobi, etc) I get up at 5:30 every morning -- walk in my shoes people <img src="i/expressions/face-icon-small-smile.gif" border="0">

As for asking people to donate... You're asking people to support the CFF for vital research for treatments and medications. Every year I send out emails and letters asking for donations for great strides. I get very little support from most of my coworkers -- a few support me and I support them with their causes -- relay for life, diabetes. We all have our causes -- prior to DS' birth mine were my university alumni association, humane society and my neighbors' causes -- American Heart Association & Diabetes. Nowdays, we primarily donate to the CFF, the U gets a MUCH smaller donation and I only support other causes if someone comes and personally asks for a donation -- friends, coworkers, neighbors...

 

[Ratatosk]

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

Thanks Heather and Tonya. The issues now lie more with co-workers and friends who don't get it. I've decided to let-go of them ever getting it (easier said than done, because I'm more of a control freak than I'd like to admit). I'm so glad to know that there are folks on here who understand.
Em</end quote></div>

When DS was diagnosed, several well meaning relatives kept telling us "maybe it'll be a mild case" and I was crushed when we asked his CF doctor about that and were told there's not such thing. CF is a progressive dieasee and even though DS's symptoms are mainly digestive eventually his lungs WILL be affected.

Coworkers and family members just don't get it. I cringe when I hear the accusatory "he doesn't look sick". DH pretty much tells the doubters "well, gee, I guess the genetic test results from Mayo were wrong. Or stresses how HARD we work to keep DS healthy" -- 3 half hour vest/cpt treatments per day, numerous medications, nebulized meds... Just ignore them. It used to bug me more, but now I'm PROUD at what we're able to do. Prior to DS's birth, I used to think I was so busy with work, working out, socializing --- my coworkers complain about a $55 copay or waking up at 4:30 in the morning ONCE in awhile. Heck, I just paid a $602 copay (tobi, etc) I get up at 5:30 every morning -- walk in my shoes people <img src="i/expressions/face-icon-small-smile.gif" border="0">

As for asking people to donate... You're asking people to support the CFF for vital research for treatments and medications. Every year I send out emails and letters asking for donations for great strides. I get very little support from most of my coworkers -- a few support me and I support them with their causes -- relay for life, diabetes. We all have our causes -- prior to DS' birth mine were my university alumni association, humane society and my neighbors' causes -- American Heart Association & Diabetes. Nowdays, we primarily donate to the CFF, the U gets a MUCH smaller donation and I only support other causes if someone comes and personally asks for a donation -- friends, coworkers, neighbors...

 

[Ratatosk]

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

Thanks Heather and Tonya. The issues now lie more with co-workers and friends who don't get it. I've decided to let-go of them ever getting it (easier said than done, because I'm more of a control freak than I'd like to admit). I'm so glad to know that there are folks on here who understand.
Em</end quote>

When DS was diagnosed, several well meaning relatives kept telling us "maybe it'll be a mild case" and I was crushed when we asked his CF doctor about that and were told there's not such thing. CF is a progressive dieasee and even though DS's symptoms are mainly digestive eventually his lungs WILL be affected.

Coworkers and family members just don't get it. I cringe when I hear the accusatory "he doesn't look sick". DH pretty much tells the doubters "well, gee, I guess the genetic test results from Mayo were wrong. Or stresses how HARD we work to keep DS healthy" -- 3 half hour vest/cpt treatments per day, numerous medications, nebulized meds... Just ignore them. It used to bug me more, but now I'm PROUD at what we're able to do. Prior to DS's birth, I used to think I was so busy with work, working out, socializing --- my coworkers complain about a $55 copay or waking up at 4:30 in the morning ONCE in awhile. Heck, I just paid a $602 copay (tobi, etc) I get up at 5:30 every morning -- walk in my shoes people <img src="i/expressions/face-icon-small-smile.gif" border="0">

As for asking people to donate... You're asking people to support the CFF for vital research for treatments and medications. Every year I send out emails and letters asking for donations for great strides. I get very little support from most of my coworkers -- a few support me and I support them with their causes -- relay for life, diabetes. We all have our causes -- prior to DS' birth mine were my university alumni association, humane society and my neighbors' causes -- American Heart Association & Diabetes. Nowdays, we primarily donate to the CFF, the U gets a MUCH smaller donation and I only support other causes if someone comes and personally asks for a donation -- friends, coworkers, neighbors...

 

[Ratatosk]

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

Thanks Heather and Tonya. The issues now lie more with co-workers and friends who don't get it. I've decided to let-go of them ever getting it (easier said than done, because I'm more of a control freak than I'd like to admit). I'm so glad to know that there are folks on here who understand.
Em</end quote>

When DS was diagnosed, several well meaning relatives kept telling us "maybe it'll be a mild case" and I was crushed when we asked his CF doctor about that and were told there's not such thing. CF is a progressive dieasee and even though DS's symptoms are mainly digestive eventually his lungs WILL be affected.

Coworkers and family members just don't get it. I cringe when I hear the accusatory "he doesn't look sick". DH pretty much tells the doubters "well, gee, I guess the genetic test results from Mayo were wrong. Or stresses how HARD we work to keep DS healthy" -- 3 half hour vest/cpt treatments per day, numerous medications, nebulized meds... Just ignore them. It used to bug me more, but now I'm PROUD at what we're able to do. Prior to DS's birth, I used to think I was so busy with work, working out, socializing --- my coworkers complain about a $55 copay or waking up at 4:30 in the morning ONCE in awhile. Heck, I just paid a $602 copay (tobi, etc) I get up at 5:30 every morning -- walk in my shoes people <img src="i/expressions/face-icon-small-smile.gif" border="0">

As for asking people to donate... You're asking people to support the CFF for vital research for treatments and medications. Every year I send out emails and letters asking for donations for great strides. I get very little support from most of my coworkers -- a few support me and I support them with their causes -- relay for life, diabetes. We all have our causes -- prior to DS' birth mine were my university alumni association, humane society and my neighbors' causes -- American Heart Association & Diabetes. Nowdays, we primarily donate to the CFF, the U gets a MUCH smaller donation and I only support other causes if someone comes and personally asks for a donation -- friends, coworkers, neighbors...