Oh and another thing... Some people -- family members, coworkers -- love the attention of being sick. You know the type, who go into great detail about all their aches and pains, appointments, medications. Maybe you're dealing with a jealous relative who thinks it's a competition.
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Need help overcoming guilt...
- Thread starter AbbysMama
- Start date
Oh and another thing... Some people -- family members, coworkers -- love the attention of being sick. You know the type, who go into great detail about all their aches and pains, appointments, medications. Maybe you're dealing with a jealous relative who thinks it's a competition.
Oh and another thing... Some people -- family members, coworkers -- love the attention of being sick. You know the type, who go into great detail about all their aches and pains, appointments, medications. Maybe you're dealing with a jealous relative who thinks it's a competition.
Oh and another thing... Some people -- family members, coworkers -- love the attention of being sick. You know the type, who go into great detail about all their aches and pains, appointments, medications. Maybe you're dealing with a jealous relative who thinks it's a competition.
Oh and another thing... Some people -- family members, coworkers -- love the attention of being sick. You know the type, who go into great detail about all their aches and pains, appointments, medications. Maybe you're dealing with a jealous relative who thinks it's a competition.
I'm 30 years old. I was a sick child; but my parents were told that I wasn't dying and ruled out CF with no testing. I love my parents. I do, but I wish they had fought harder to find out what was wrong with me.
Don't you let ANYONE make you feel bad for protecting your daughter. Never ever let them.
I tell people all of the time, CF is progressive. But we don't all start from the same place at the same time...
Keep fighting, and educate those who do not get it. Its our only hope, I think the more who know the reality of CF; the more who will fight to cure it.
<img src="i/expressions/rose.gif" border="0">
Chrissy
30 W/CF
Don't you let ANYONE make you feel bad for protecting your daughter. Never ever let them.
I tell people all of the time, CF is progressive. But we don't all start from the same place at the same time...
Keep fighting, and educate those who do not get it. Its our only hope, I think the more who know the reality of CF; the more who will fight to cure it.
<img src="i/expressions/rose.gif" border="0">
Chrissy
30 W/CF
I'm 30 years old. I was a sick child; but my parents were told that I wasn't dying and ruled out CF with no testing. I love my parents. I do, but I wish they had fought harder to find out what was wrong with me.
Don't you let ANYONE make you feel bad for protecting your daughter. Never ever let them.
I tell people all of the time, CF is progressive. But we don't all start from the same place at the same time...
Keep fighting, and educate those who do not get it. Its our only hope, I think the more who know the reality of CF; the more who will fight to cure it.
<img src="i/expressions/rose.gif" border="0">
Chrissy
30 W/CF
Don't you let ANYONE make you feel bad for protecting your daughter. Never ever let them.
I tell people all of the time, CF is progressive. But we don't all start from the same place at the same time...
Keep fighting, and educate those who do not get it. Its our only hope, I think the more who know the reality of CF; the more who will fight to cure it.
<img src="i/expressions/rose.gif" border="0">
Chrissy
30 W/CF
I'm 30 years old. I was a sick child; but my parents were told that I wasn't dying and ruled out CF with no testing. I love my parents. I do, but I wish they had fought harder to find out what was wrong with me.
Don't you let ANYONE make you feel bad for protecting your daughter. Never ever let them.
I tell people all of the time, CF is progressive. But we don't all start from the same place at the same time...
Keep fighting, and educate those who do not get it. Its our only hope, I think the more who know the reality of CF; the more who will fight to cure it.
<img src="i/expressions/rose.gif" border="0">
Chrissy
30 W/CF
Don't you let ANYONE make you feel bad for protecting your daughter. Never ever let them.
I tell people all of the time, CF is progressive. But we don't all start from the same place at the same time...
Keep fighting, and educate those who do not get it. Its our only hope, I think the more who know the reality of CF; the more who will fight to cure it.
<img src="i/expressions/rose.gif" border="0">
Chrissy
30 W/CF
I'm 30 years old. I was a sick child; but my parents were told that I wasn't dying and ruled out CF with no testing. I love my parents. I do, but I wish they had fought harder to find out what was wrong with me.
Don't you let ANYONE make you feel bad for protecting your daughter. Never ever let them.
I tell people all of the time, CF is progressive. But we don't all start from the same place at the same time...
Keep fighting, and educate those who do not get it. Its our only hope, I think the more who know the reality of CF; the more who will fight to cure it.
<img src="i/expressions/rose.gif" border="0">
Chrissy
30 W/CF
Don't you let ANYONE make you feel bad for protecting your daughter. Never ever let them.
I tell people all of the time, CF is progressive. But we don't all start from the same place at the same time...
Keep fighting, and educate those who do not get it. Its our only hope, I think the more who know the reality of CF; the more who will fight to cure it.
<img src="i/expressions/rose.gif" border="0">
Chrissy
30 W/CF
I'm 30 years old. I was a sick child; but my parents were told that I wasn't dying and ruled out CF with no testing. I love my parents. I do, but I wish they had fought harder to find out what was wrong with me.
Don't you let ANYONE make you feel bad for protecting your daughter. Never ever let them.
I tell people all of the time, CF is progressive. But we don't all start from the same place at the same time...
Keep fighting, and educate those who do not get it. Its our only hope, I think the more who know the reality of CF; the more who will fight to cure it.
<img src="i/expressions/rose.gif" border="0">
Chrissy
30 W/CF
Don't you let ANYONE make you feel bad for protecting your daughter. Never ever let them.
I tell people all of the time, CF is progressive. But we don't all start from the same place at the same time...
Keep fighting, and educate those who do not get it. Its our only hope, I think the more who know the reality of CF; the more who will fight to cure it.
<img src="i/expressions/rose.gif" border="0">
Chrissy
30 W/CF
S
sdelorenzo
Guest
I try not to talk about the impact cf has on our family. I don't talk about how much time treatments take, etc. to others. I really don't think people want to hear about other peoples problems. I want others to see what a great life my kids have despite their diagnosis. But I do use Great Strides as an opportunity to educate all of our family and friends (basically everyone we know) on cf and how it impacts my family's life. I include a cf article from the newspaper or an article I saw on-line with our Great Strides letter. Often it is about another child with cf and what they go through. That way it is not just about my children and nephew, but about others with cf too and what they go through. I discuss how cf impacts our life and what the research will do for my children and those with cf. I also talk about the emotional toll on our family and what it is like to walk down this road with my kids. I make sure they understand my kids are doing well because of the generous donations to the CF Foundation in the past. That is what enables my kids to have a great life. But we need more donations to continue to keep them this healthy and to raise the life expectancy. People we know don't have misconceptions about cf as a result of our Great Strides information that we have given them. I thankfully don't have to explain anything about cf because they already all know. We also don't ask anyone to walk with us. We just ask for a donation. That way you could just go to the walk but not expect anyone to show up that morning. After all, the way I see it is walking won't get us a cure, but there $'s will. Those who want to show up will without me asking.
I know you might not feel as though your daughter is fighting cf. Hopefully she won't have to anytime soon. But chances are she will have some symptoms at some point. I, too, have had years go by with my kids where they seem perfectly healthy. Then I get an unexpected call from the nurse with a culture that turns everything upside down. We all just got the flu last week even though we had the flu shots. Here I am in sitting in the hospital with my four-year-old son who has pneumonia now. He hasn't been in the hospital since he was three-months old. I wasn't expecting this.
So try not to worry about what anyone else thinks about raising money for cf. You will just stress yourself out if you wonder about what other people might think. Also, just be thankful you are having these wonderful times with your daughter. Praise God!
Sharon, mom of Sophia, 6 and Jack, 4 both with cf, aunt to Joseph, 10 with cf
I know you might not feel as though your daughter is fighting cf. Hopefully she won't have to anytime soon. But chances are she will have some symptoms at some point. I, too, have had years go by with my kids where they seem perfectly healthy. Then I get an unexpected call from the nurse with a culture that turns everything upside down. We all just got the flu last week even though we had the flu shots. Here I am in sitting in the hospital with my four-year-old son who has pneumonia now. He hasn't been in the hospital since he was three-months old. I wasn't expecting this.
So try not to worry about what anyone else thinks about raising money for cf. You will just stress yourself out if you wonder about what other people might think. Also, just be thankful you are having these wonderful times with your daughter. Praise God!
Sharon, mom of Sophia, 6 and Jack, 4 both with cf, aunt to Joseph, 10 with cf
S
sdelorenzo
Guest
I try not to talk about the impact cf has on our family. I don't talk about how much time treatments take, etc. to others. I really don't think people want to hear about other peoples problems. I want others to see what a great life my kids have despite their diagnosis. But I do use Great Strides as an opportunity to educate all of our family and friends (basically everyone we know) on cf and how it impacts my family's life. I include a cf article from the newspaper or an article I saw on-line with our Great Strides letter. Often it is about another child with cf and what they go through. That way it is not just about my children and nephew, but about others with cf too and what they go through. I discuss how cf impacts our life and what the research will do for my children and those with cf. I also talk about the emotional toll on our family and what it is like to walk down this road with my kids. I make sure they understand my kids are doing well because of the generous donations to the CF Foundation in the past. That is what enables my kids to have a great life. But we need more donations to continue to keep them this healthy and to raise the life expectancy. People we know don't have misconceptions about cf as a result of our Great Strides information that we have given them. I thankfully don't have to explain anything about cf because they already all know. We also don't ask anyone to walk with us. We just ask for a donation. That way you could just go to the walk but not expect anyone to show up that morning. After all, the way I see it is walking won't get us a cure, but there $'s will. Those who want to show up will without me asking.
I know you might not feel as though your daughter is fighting cf. Hopefully she won't have to anytime soon. But chances are she will have some symptoms at some point. I, too, have had years go by with my kids where they seem perfectly healthy. Then I get an unexpected call from the nurse with a culture that turns everything upside down. We all just got the flu last week even though we had the flu shots. Here I am in sitting in the hospital with my four-year-old son who has pneumonia now. He hasn't been in the hospital since he was three-months old. I wasn't expecting this.
So try not to worry about what anyone else thinks about raising money for cf. You will just stress yourself out if you wonder about what other people might think. Also, just be thankful you are having these wonderful times with your daughter. Praise God!
Sharon, mom of Sophia, 6 and Jack, 4 both with cf, aunt to Joseph, 10 with cf
I know you might not feel as though your daughter is fighting cf. Hopefully she won't have to anytime soon. But chances are she will have some symptoms at some point. I, too, have had years go by with my kids where they seem perfectly healthy. Then I get an unexpected call from the nurse with a culture that turns everything upside down. We all just got the flu last week even though we had the flu shots. Here I am in sitting in the hospital with my four-year-old son who has pneumonia now. He hasn't been in the hospital since he was three-months old. I wasn't expecting this.
So try not to worry about what anyone else thinks about raising money for cf. You will just stress yourself out if you wonder about what other people might think. Also, just be thankful you are having these wonderful times with your daughter. Praise God!
Sharon, mom of Sophia, 6 and Jack, 4 both with cf, aunt to Joseph, 10 with cf
S
sdelorenzo
Guest
I try not to talk about the impact cf has on our family. I don't talk about how much time treatments take, etc. to others. I really don't think people want to hear about other peoples problems. I want others to see what a great life my kids have despite their diagnosis. But I do use Great Strides as an opportunity to educate all of our family and friends (basically everyone we know) on cf and how it impacts my family's life. I include a cf article from the newspaper or an article I saw on-line with our Great Strides letter. Often it is about another child with cf and what they go through. That way it is not just about my children and nephew, but about others with cf too and what they go through. I discuss how cf impacts our life and what the research will do for my children and those with cf. I also talk about the emotional toll on our family and what it is like to walk down this road with my kids. I make sure they understand my kids are doing well because of the generous donations to the CF Foundation in the past. That is what enables my kids to have a great life. But we need more donations to continue to keep them this healthy and to raise the life expectancy. People we know don't have misconceptions about cf as a result of our Great Strides information that we have given them. I thankfully don't have to explain anything about cf because they already all know. We also don't ask anyone to walk with us. We just ask for a donation. That way you could just go to the walk but not expect anyone to show up that morning. After all, the way I see it is walking won't get us a cure, but there $'s will. Those who want to show up will without me asking.
I know you might not feel as though your daughter is fighting cf. Hopefully she won't have to anytime soon. But chances are she will have some symptoms at some point. I, too, have had years go by with my kids where they seem perfectly healthy. Then I get an unexpected call from the nurse with a culture that turns everything upside down. We all just got the flu last week even though we had the flu shots. Here I am in sitting in the hospital with my four-year-old son who has pneumonia now. He hasn't been in the hospital since he was three-months old. I wasn't expecting this.
So try not to worry about what anyone else thinks about raising money for cf. You will just stress yourself out if you wonder about what other people might think. Also, just be thankful you are having these wonderful times with your daughter. Praise God!
Sharon, mom of Sophia, 6 and Jack, 4 both with cf, aunt to Joseph, 10 with cf
I know you might not feel as though your daughter is fighting cf. Hopefully she won't have to anytime soon. But chances are she will have some symptoms at some point. I, too, have had years go by with my kids where they seem perfectly healthy. Then I get an unexpected call from the nurse with a culture that turns everything upside down. We all just got the flu last week even though we had the flu shots. Here I am in sitting in the hospital with my four-year-old son who has pneumonia now. He hasn't been in the hospital since he was three-months old. I wasn't expecting this.
So try not to worry about what anyone else thinks about raising money for cf. You will just stress yourself out if you wonder about what other people might think. Also, just be thankful you are having these wonderful times with your daughter. Praise God!
Sharon, mom of Sophia, 6 and Jack, 4 both with cf, aunt to Joseph, 10 with cf
S
sdelorenzo
Guest
I try not to talk about the impact cf has on our family. I don't talk about how much time treatments take, etc. to others. I really don't think people want to hear about other peoples problems. I want others to see what a great life my kids have despite their diagnosis. But I do use Great Strides as an opportunity to educate all of our family and friends (basically everyone we know) on cf and how it impacts my family's life. I include a cf article from the newspaper or an article I saw on-line with our Great Strides letter. Often it is about another child with cf and what they go through. That way it is not just about my children and nephew, but about others with cf too and what they go through. I discuss how cf impacts our life and what the research will do for my children and those with cf. I also talk about the emotional toll on our family and what it is like to walk down this road with my kids. I make sure they understand my kids are doing well because of the generous donations to the CF Foundation in the past. That is what enables my kids to have a great life. But we need more donations to continue to keep them this healthy and to raise the life expectancy. People we know don't have misconceptions about cf as a result of our Great Strides information that we have given them. I thankfully don't have to explain anything about cf because they already all know. We also don't ask anyone to walk with us. We just ask for a donation. That way you could just go to the walk but not expect anyone to show up that morning. After all, the way I see it is walking won't get us a cure, but there $'s will. Those who want to show up will without me asking.
I know you might not feel as though your daughter is fighting cf. Hopefully she won't have to anytime soon. But chances are she will have some symptoms at some point. I, too, have had years go by with my kids where they seem perfectly healthy. Then I get an unexpected call from the nurse with a culture that turns everything upside down. We all just got the flu last week even though we had the flu shots. Here I am in sitting in the hospital with my four-year-old son who has pneumonia now. He hasn't been in the hospital since he was three-months old. I wasn't expecting this.
So try not to worry about what anyone else thinks about raising money for cf. You will just stress yourself out if you wonder about what other people might think. Also, just be thankful you are having these wonderful times with your daughter. Praise God!
Sharon, mom of Sophia, 6 and Jack, 4 both with cf, aunt to Joseph, 10 with cf
I know you might not feel as though your daughter is fighting cf. Hopefully she won't have to anytime soon. But chances are she will have some symptoms at some point. I, too, have had years go by with my kids where they seem perfectly healthy. Then I get an unexpected call from the nurse with a culture that turns everything upside down. We all just got the flu last week even though we had the flu shots. Here I am in sitting in the hospital with my four-year-old son who has pneumonia now. He hasn't been in the hospital since he was three-months old. I wasn't expecting this.
So try not to worry about what anyone else thinks about raising money for cf. You will just stress yourself out if you wonder about what other people might think. Also, just be thankful you are having these wonderful times with your daughter. Praise God!
Sharon, mom of Sophia, 6 and Jack, 4 both with cf, aunt to Joseph, 10 with cf
S
sdelorenzo
Guest
I try not to talk about the impact cf has on our family. I don't talk about how much time treatments take, etc. to others. I really don't think people want to hear about other peoples problems. I want others to see what a great life my kids have despite their diagnosis. But I do use Great Strides as an opportunity to educate all of our family and friends (basically everyone we know) on cf and how it impacts my family's life. I include a cf article from the newspaper or an article I saw on-line with our Great Strides letter. Often it is about another child with cf and what they go through. That way it is not just about my children and nephew, but about others with cf too and what they go through. I discuss how cf impacts our life and what the research will do for my children and those with cf. I also talk about the emotional toll on our family and what it is like to walk down this road with my kids. I make sure they understand my kids are doing well because of the generous donations to the CF Foundation in the past. That is what enables my kids to have a great life. But we need more donations to continue to keep them this healthy and to raise the life expectancy. People we know don't have misconceptions about cf as a result of our Great Strides information that we have given them. I thankfully don't have to explain anything about cf because they already all know. We also don't ask anyone to walk with us. We just ask for a donation. That way you could just go to the walk but not expect anyone to show up that morning. After all, the way I see it is walking won't get us a cure, but there $'s will. Those who want to show up will without me asking.
I know you might not feel as though your daughter is fighting cf. Hopefully she won't have to anytime soon. But chances are she will have some symptoms at some point. I, too, have had years go by with my kids where they seem perfectly healthy. Then I get an unexpected call from the nurse with a culture that turns everything upside down. We all just got the flu last week even though we had the flu shots. Here I am in sitting in the hospital with my four-year-old son who has pneumonia now. He hasn't been in the hospital since he was three-months old. I wasn't expecting this.
So try not to worry about what anyone else thinks about raising money for cf. You will just stress yourself out if you wonder about what other people might think. Also, just be thankful you are having these wonderful times with your daughter. Praise God!
Sharon, mom of Sophia, 6 and Jack, 4 both with cf, aunt to Joseph, 10 with cf
I know you might not feel as though your daughter is fighting cf. Hopefully she won't have to anytime soon. But chances are she will have some symptoms at some point. I, too, have had years go by with my kids where they seem perfectly healthy. Then I get an unexpected call from the nurse with a culture that turns everything upside down. We all just got the flu last week even though we had the flu shots. Here I am in sitting in the hospital with my four-year-old son who has pneumonia now. He hasn't been in the hospital since he was three-months old. I wasn't expecting this.
So try not to worry about what anyone else thinks about raising money for cf. You will just stress yourself out if you wonder about what other people might think. Also, just be thankful you are having these wonderful times with your daughter. Praise God!
Sharon, mom of Sophia, 6 and Jack, 4 both with cf, aunt to Joseph, 10 with cf
kayleesgrandma
New member
I hate to present negative information--but it is still a fact that half of the children with CF still die before they reach the age of 20. The fact that there are so many 20 and 30 yr olds here on site-- is that the parents worked so hard, as was previously mentioned. If you have been following some of the other members--there is a whole range of problems that their children are sufffering with--like Garren (vnhoward), Reece (mom2RT), Isaiah (sweetwhite)...My Kaylee is the same D 508 and R117 H. I too felt guilty when people even from here would ask how she was and she was doing great. Then she got psuedo and had to go on Tobi and Cipro...so the long road starts.
Having CF is like having an elephant in the closet-at any time it can get out and rear it's ugly head--you never know what a simple thing like a cold or even playing in the dirt can do...
Looking at Kaylee's xrays the other day on her 3month/year visit--we compared them to the last two years...a little tiny bit of decrease, barely noticable, each year. How sad, they can NEVER get better--only worse.
I liked the "brushing your teeth" anology--that was great. You need to stress what you do to prevent it, what is happening to her lungs that cannot be reversed--that you want to see her graduate and maybe get married. That 1 in 30 people are carriers, and it could happen to them in a heartbeat...or to their grandchildren. As them if they would feel that way if you told them she had cancer--I'm sure you would have received so much more sympathy.
Sorry for the rant--but stupid people just really p*** me off!!!
PS--DON'T--I REPEAT--DON'T--FEEL GUILTY--ALWAYS USE IT FOR AN OPPORTUNITY TO EDUCATE!!!
Having CF is like having an elephant in the closet-at any time it can get out and rear it's ugly head--you never know what a simple thing like a cold or even playing in the dirt can do...
Looking at Kaylee's xrays the other day on her 3month/year visit--we compared them to the last two years...a little tiny bit of decrease, barely noticable, each year. How sad, they can NEVER get better--only worse.
I liked the "brushing your teeth" anology--that was great. You need to stress what you do to prevent it, what is happening to her lungs that cannot be reversed--that you want to see her graduate and maybe get married. That 1 in 30 people are carriers, and it could happen to them in a heartbeat...or to their grandchildren. As them if they would feel that way if you told them she had cancer--I'm sure you would have received so much more sympathy.
Sorry for the rant--but stupid people just really p*** me off!!!
PS--DON'T--I REPEAT--DON'T--FEEL GUILTY--ALWAYS USE IT FOR AN OPPORTUNITY TO EDUCATE!!!
kayleesgrandma
New member
I hate to present negative information--but it is still a fact that half of the children with CF still die before they reach the age of 20. The fact that there are so many 20 and 30 yr olds here on site-- is that the parents worked so hard, as was previously mentioned. If you have been following some of the other members--there is a whole range of problems that their children are sufffering with--like Garren (vnhoward), Reece (mom2RT), Isaiah (sweetwhite)...My Kaylee is the same D 508 and R117 H. I too felt guilty when people even from here would ask how she was and she was doing great. Then she got psuedo and had to go on Tobi and Cipro...so the long road starts.
Having CF is like having an elephant in the closet-at any time it can get out and rear it's ugly head--you never know what a simple thing like a cold or even playing in the dirt can do...
Looking at Kaylee's xrays the other day on her 3month/year visit--we compared them to the last two years...a little tiny bit of decrease, barely noticable, each year. How sad, they can NEVER get better--only worse.
I liked the "brushing your teeth" anology--that was great. You need to stress what you do to prevent it, what is happening to her lungs that cannot be reversed--that you want to see her graduate and maybe get married. That 1 in 30 people are carriers, and it could happen to them in a heartbeat...or to their grandchildren. As them if they would feel that way if you told them she had cancer--I'm sure you would have received so much more sympathy.
Sorry for the rant--but stupid people just really p*** me off!!!
PS--DON'T--I REPEAT--DON'T--FEEL GUILTY--ALWAYS USE IT FOR AN OPPORTUNITY TO EDUCATE!!!
Having CF is like having an elephant in the closet-at any time it can get out and rear it's ugly head--you never know what a simple thing like a cold or even playing in the dirt can do...
Looking at Kaylee's xrays the other day on her 3month/year visit--we compared them to the last two years...a little tiny bit of decrease, barely noticable, each year. How sad, they can NEVER get better--only worse.
I liked the "brushing your teeth" anology--that was great. You need to stress what you do to prevent it, what is happening to her lungs that cannot be reversed--that you want to see her graduate and maybe get married. That 1 in 30 people are carriers, and it could happen to them in a heartbeat...or to their grandchildren. As them if they would feel that way if you told them she had cancer--I'm sure you would have received so much more sympathy.
Sorry for the rant--but stupid people just really p*** me off!!!
PS--DON'T--I REPEAT--DON'T--FEEL GUILTY--ALWAYS USE IT FOR AN OPPORTUNITY TO EDUCATE!!!
kayleesgrandma
New member
I hate to present negative information--but it is still a fact that half of the children with CF still die before they reach the age of 20. The fact that there are so many 20 and 30 yr olds here on site-- is that the parents worked so hard, as was previously mentioned. If you have been following some of the other members--there is a whole range of problems that their children are sufffering with--like Garren (vnhoward), Reece (mom2RT), Isaiah (sweetwhite)...My Kaylee is the same D 508 and R117 H. I too felt guilty when people even from here would ask how she was and she was doing great. Then she got psuedo and had to go on Tobi and Cipro...so the long road starts.
Having CF is like having an elephant in the closet-at any time it can get out and rear it's ugly head--you never know what a simple thing like a cold or even playing in the dirt can do...
Looking at Kaylee's xrays the other day on her 3month/year visit--we compared them to the last two years...a little tiny bit of decrease, barely noticable, each year. How sad, they can NEVER get better--only worse.
I liked the "brushing your teeth" anology--that was great. You need to stress what you do to prevent it, what is happening to her lungs that cannot be reversed--that you want to see her graduate and maybe get married. That 1 in 30 people are carriers, and it could happen to them in a heartbeat...or to their grandchildren. As them if they would feel that way if you told them she had cancer--I'm sure you would have received so much more sympathy.
Sorry for the rant--but stupid people just really p*** me off!!!
PS--DON'T--I REPEAT--DON'T--FEEL GUILTY--ALWAYS USE IT FOR AN OPPORTUNITY TO EDUCATE!!!
Having CF is like having an elephant in the closet-at any time it can get out and rear it's ugly head--you never know what a simple thing like a cold or even playing in the dirt can do...
Looking at Kaylee's xrays the other day on her 3month/year visit--we compared them to the last two years...a little tiny bit of decrease, barely noticable, each year. How sad, they can NEVER get better--only worse.
I liked the "brushing your teeth" anology--that was great. You need to stress what you do to prevent it, what is happening to her lungs that cannot be reversed--that you want to see her graduate and maybe get married. That 1 in 30 people are carriers, and it could happen to them in a heartbeat...or to their grandchildren. As them if they would feel that way if you told them she had cancer--I'm sure you would have received so much more sympathy.
Sorry for the rant--but stupid people just really p*** me off!!!
PS--DON'T--I REPEAT--DON'T--FEEL GUILTY--ALWAYS USE IT FOR AN OPPORTUNITY TO EDUCATE!!!
kayleesgrandma
New member
I hate to present negative information--but it is still a fact that half of the children with CF still die before they reach the age of 20. The fact that there are so many 20 and 30 yr olds here on site-- is that the parents worked so hard, as was previously mentioned. If you have been following some of the other members--there is a whole range of problems that their children are sufffering with--like Garren (vnhoward), Reece (mom2RT), Isaiah (sweetwhite)...My Kaylee is the same D 508 and R117 H. I too felt guilty when people even from here would ask how she was and she was doing great. Then she got psuedo and had to go on Tobi and Cipro...so the long road starts.
Having CF is like having an elephant in the closet-at any time it can get out and rear it's ugly head--you never know what a simple thing like a cold or even playing in the dirt can do...
Looking at Kaylee's xrays the other day on her 3month/year visit--we compared them to the last two years...a little tiny bit of decrease, barely noticable, each year. How sad, they can NEVER get better--only worse.
I liked the "brushing your teeth" anology--that was great. You need to stress what you do to prevent it, what is happening to her lungs that cannot be reversed--that you want to see her graduate and maybe get married. That 1 in 30 people are carriers, and it could happen to them in a heartbeat...or to their grandchildren. As them if they would feel that way if you told them she had cancer--I'm sure you would have received so much more sympathy.
Sorry for the rant--but stupid people just really p*** me off!!!
PS--DON'T--I REPEAT--DON'T--FEEL GUILTY--ALWAYS USE IT FOR AN OPPORTUNITY TO EDUCATE!!!
Having CF is like having an elephant in the closet-at any time it can get out and rear it's ugly head--you never know what a simple thing like a cold or even playing in the dirt can do...
Looking at Kaylee's xrays the other day on her 3month/year visit--we compared them to the last two years...a little tiny bit of decrease, barely noticable, each year. How sad, they can NEVER get better--only worse.
I liked the "brushing your teeth" anology--that was great. You need to stress what you do to prevent it, what is happening to her lungs that cannot be reversed--that you want to see her graduate and maybe get married. That 1 in 30 people are carriers, and it could happen to them in a heartbeat...or to their grandchildren. As them if they would feel that way if you told them she had cancer--I'm sure you would have received so much more sympathy.
Sorry for the rant--but stupid people just really p*** me off!!!
PS--DON'T--I REPEAT--DON'T--FEEL GUILTY--ALWAYS USE IT FOR AN OPPORTUNITY TO EDUCATE!!!
kayleesgrandma
New member
I hate to present negative information--but it is still a fact that half of the children with CF still die before they reach the age of 20. The fact that there are so many 20 and 30 yr olds here on site-- is that the parents worked so hard, as was previously mentioned. If you have been following some of the other members--there is a whole range of problems that their children are sufffering with--like Garren (vnhoward), Reece (mom2RT), Isaiah (sweetwhite)...My Kaylee is the same D 508 and R117 H. I too felt guilty when people even from here would ask how she was and she was doing great. Then she got psuedo and had to go on Tobi and Cipro...so the long road starts.
Having CF is like having an elephant in the closet-at any time it can get out and rear it's ugly head--you never know what a simple thing like a cold or even playing in the dirt can do...
Looking at Kaylee's xrays the other day on her 3month/year visit--we compared them to the last two years...a little tiny bit of decrease, barely noticable, each year. How sad, they can NEVER get better--only worse.
I liked the "brushing your teeth" anology--that was great. You need to stress what you do to prevent it, what is happening to her lungs that cannot be reversed--that you want to see her graduate and maybe get married. That 1 in 30 people are carriers, and it could happen to them in a heartbeat...or to their grandchildren. As them if they would feel that way if you told them she had cancer--I'm sure you would have received so much more sympathy.
Sorry for the rant--but stupid people just really p*** me off!!!
PS--DON'T--I REPEAT--DON'T--FEEL GUILTY--ALWAYS USE IT FOR AN OPPORTUNITY TO EDUCATE!!!
Having CF is like having an elephant in the closet-at any time it can get out and rear it's ugly head--you never know what a simple thing like a cold or even playing in the dirt can do...
Looking at Kaylee's xrays the other day on her 3month/year visit--we compared them to the last two years...a little tiny bit of decrease, barely noticable, each year. How sad, they can NEVER get better--only worse.
I liked the "brushing your teeth" anology--that was great. You need to stress what you do to prevent it, what is happening to her lungs that cannot be reversed--that you want to see her graduate and maybe get married. That 1 in 30 people are carriers, and it could happen to them in a heartbeat...or to their grandchildren. As them if they would feel that way if you told them she had cancer--I'm sure you would have received so much more sympathy.
Sorry for the rant--but stupid people just really p*** me off!!!
PS--DON'T--I REPEAT--DON'T--FEEL GUILTY--ALWAYS USE IT FOR AN OPPORTUNITY TO EDUCATE!!!