I wouldn't go to a support group either...for the same exact reasons as saveferris, I work so hard everyday to maintain my health and I wouldn't want to put that at risk. This is why I never go to Great Strides meetings either. I think it's just another cruelty of CF, to have a disease that doesn't allow you to be around the other people in the world who know best what you are going through. So happy I found this site though!
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Support Groups
- Thread starter AimeeSue82
- Start date
I wouldn't go to a support group either...for the same exact reasons as saveferris, I work so hard everyday to maintain my health and I wouldn't want to put that at risk. This is why I never go to Great Strides meetings either. I think it's just another cruelty of CF, to have a disease that doesn't allow you to be around the other people in the world who know best what you are going through. So happy I found this site though!
I wouldn't go to a support group either...for the same exact reasons as saveferris, I work so hard everyday to maintain my health and I wouldn't want to put that at risk. This is why I never go to Great Strides meetings either. I think it's just another cruelty of CF, to have a disease that doesn't allow you to be around the other people in the world who know best what you are going through. So happy I found this site though!
I wouldn't go to a support group either...for the same exact reasons as saveferris, I work so hard everyday to maintain my health and I wouldn't want to put that at risk. This is why I never go to Great Strides meetings either. I think it's just another cruelty of CF, to have a disease that doesn't allow you to be around the other people in the world who know best what you are going through. So happy I found this site though!
I wouldn't go to a support group either...for the same exact reasons as saveferris, I work so hard everyday to maintain my health and I wouldn't want to put that at risk. This is why I never go to Great Strides meetings either. I think it's just another cruelty of CF, to have a disease that doesn't allow you to be around the other people in the world who know best what you are going through. So happy I found this site though!
megcfgirl05
New member
you all need not to be negative. you are around CF people all the time, in the clinics, at the mall, you never know who has it, and were they coughed. Wear masks, bring hand sanitizers. you know i have only met one other Cf person in my LIFE that i know of. It would be neat to meet other people like me! We can ALwyas take precautions, and if other CFrs have mersa or the other then do not come, i think that can respect that idea! Or just start an online thing, if it doesnt work out the other way that you have planned. We all work hard on staying healthy, but we cant live in a bubble our whole lives! Especially Children all children are the most sickly people, bc they are just children, we take care of them and take the risk of getting sick bc we love them and want to make them feel better, so in that instance we are taking the risk that way, why not the other in meeting CF people sharing ideas, stories, and anything that makes us feel better! I dont know thats just my though, any one can do what they want and when they want!! Go for it!!
xoxo-Megan
xoxo-Megan
megcfgirl05
New member
you all need not to be negative. you are around CF people all the time, in the clinics, at the mall, you never know who has it, and were they coughed. Wear masks, bring hand sanitizers. you know i have only met one other Cf person in my LIFE that i know of. It would be neat to meet other people like me! We can ALwyas take precautions, and if other CFrs have mersa or the other then do not come, i think that can respect that idea! Or just start an online thing, if it doesnt work out the other way that you have planned. We all work hard on staying healthy, but we cant live in a bubble our whole lives! Especially Children all children are the most sickly people, bc they are just children, we take care of them and take the risk of getting sick bc we love them and want to make them feel better, so in that instance we are taking the risk that way, why not the other in meeting CF people sharing ideas, stories, and anything that makes us feel better! I dont know thats just my though, any one can do what they want and when they want!! Go for it!!
xoxo-Megan
xoxo-Megan
megcfgirl05
New member
you all need not to be negative. you are around CF people all the time, in the clinics, at the mall, you never know who has it, and were they coughed. Wear masks, bring hand sanitizers. you know i have only met one other Cf person in my LIFE that i know of. It would be neat to meet other people like me! We can ALwyas take precautions, and if other CFrs have mersa or the other then do not come, i think that can respect that idea! Or just start an online thing, if it doesnt work out the other way that you have planned. We all work hard on staying healthy, but we cant live in a bubble our whole lives! Especially Children all children are the most sickly people, bc they are just children, we take care of them and take the risk of getting sick bc we love them and want to make them feel better, so in that instance we are taking the risk that way, why not the other in meeting CF people sharing ideas, stories, and anything that makes us feel better! I dont know thats just my though, any one can do what they want and when they want!! Go for it!!
xoxo-Megan
xoxo-Megan
megcfgirl05
New member
you all need not to be negative. you are around CF people all the time, in the clinics, at the mall, you never know who has it, and were they coughed. Wear masks, bring hand sanitizers. you know i have only met one other Cf person in my LIFE that i know of. It would be neat to meet other people like me! We can ALwyas take precautions, and if other CFrs have mersa or the other then do not come, i think that can respect that idea! Or just start an online thing, if it doesnt work out the other way that you have planned. We all work hard on staying healthy, but we cant live in a bubble our whole lives! Especially Children all children are the most sickly people, bc they are just children, we take care of them and take the risk of getting sick bc we love them and want to make them feel better, so in that instance we are taking the risk that way, why not the other in meeting CF people sharing ideas, stories, and anything that makes us feel better! I dont know thats just my though, any one can do what they want and when they want!! Go for it!!
xoxo-Megan
xoxo-Megan
megcfgirl05
New member
you all need not to be negative. you are around CF people all the time, in the clinics, at the mall, you never know who has it, and were they coughed. Wear masks, bring hand sanitizers. you know i have only met one other Cf person in my LIFE that i know of. It would be neat to meet other people like me! We can ALwyas take precautions, and if other CFrs have mersa or the other then do not come, i think that can respect that idea! Or just start an online thing, if it doesnt work out the other way that you have planned. We all work hard on staying healthy, but we cant live in a bubble our whole lives! Especially Children all children are the most sickly people, bc they are just children, we take care of them and take the risk of getting sick bc we love them and want to make them feel better, so in that instance we are taking the risk that way, why not the other in meeting CF people sharing ideas, stories, and anything that makes us feel better! I dont know thats just my though, any one can do what they want and when they want!! Go for it!!
<br />
<br />xoxo-Megan
<br />
<br />xoxo-Megan
I think support groups can be good or bad when I first was introduced to CF world support groups back then we were warned aganist by another parent. Only becasue at that time is was more or less parents full of negativity and feeling sorry for themselves and pretty much continuous talk of your children dying but that was some 20 years ago. My 24 yr old and 28 yr old have friends with CF that they hang out with and when in the hospital when other cf patients are there they hang out (masks of course etc) I find that they need each other, they can talk share and help each other emotionally more than sometimes non CF caregivers can understand or assist. And caregivers could also use a face to face constructive support . So if done correctly I think it would be a very good idea. There are days we all need to know someone else has been in or is in our shoes.
I think support groups can be good or bad when I first was introduced to CF world support groups back then we were warned aganist by another parent. Only becasue at that time is was more or less parents full of negativity and feeling sorry for themselves and pretty much continuous talk of your children dying but that was some 20 years ago. My 24 yr old and 28 yr old have friends with CF that they hang out with and when in the hospital when other cf patients are there they hang out (masks of course etc) I find that they need each other, they can talk share and help each other emotionally more than sometimes non CF caregivers can understand or assist. And caregivers could also use a face to face constructive support . So if done correctly I think it would be a very good idea. There are days we all need to know someone else has been in or is in our shoes.
I think support groups can be good or bad when I first was introduced to CF world support groups back then we were warned aganist by another parent. Only becasue at that time is was more or less parents full of negativity and feeling sorry for themselves and pretty much continuous talk of your children dying but that was some 20 years ago. My 24 yr old and 28 yr old have friends with CF that they hang out with and when in the hospital when other cf patients are there they hang out (masks of course etc) I find that they need each other, they can talk share and help each other emotionally more than sometimes non CF caregivers can understand or assist. And caregivers could also use a face to face constructive support . So if done correctly I think it would be a very good idea. There are days we all need to know someone else has been in or is in our shoes.
I think support groups can be good or bad when I first was introduced to CF world support groups back then we were warned aganist by another parent. Only becasue at that time is was more or less parents full of negativity and feeling sorry for themselves and pretty much continuous talk of your children dying but that was some 20 years ago. My 24 yr old and 28 yr old have friends with CF that they hang out with and when in the hospital when other cf patients are there they hang out (masks of course etc) I find that they need each other, they can talk share and help each other emotionally more than sometimes non CF caregivers can understand or assist. And caregivers could also use a face to face constructive support . So if done correctly I think it would be a very good idea. There are days we all need to know someone else has been in or is in our shoes.
I think support groups can be good or bad when I first was introduced to CF world support groups back then we were warned aganist by another parent. Only becasue at that time is was more or less parents full of negativity and feeling sorry for themselves and pretty much continuous talk of your children dying but that was some 20 years ago. My 24 yr old and 28 yr old have friends with CF that they hang out with and when in the hospital when other cf patients are there they hang out (masks of course etc) I find that they need each other, they can talk share and help each other emotionally more than sometimes non CF caregivers can understand or assist. And caregivers could also use a face to face constructive support . So if done correctly I think it would be a very good idea. There are days we all need to know someone else has been in or is in our shoes.
PedsNP2007
New member
Meg,
I beg to differ. Being around kids is very different than being around other CF people. Children (normal healthy ones) do not routinely carry around cultured bacteria in their respiratory tract. I would rather be exposed to a virus from a child than another strain of pseudomonas that is going to set up a home in my lungs and can cause ongoing problems.
I haven't been to a support group in 20 years. I did tae kwon do and breathing exercises with my old CF clinic when I was a young child. I shudder now when I think of how we were all around each other and people coughing, etc. No one really knew better back then. Heck, my siblings and I even went one year to camp.
Yes, we have a cruel disease that does not permit us to hang around each other and receive support that way. Yes, there are ways around it with having "good cultures" that allow you to attend CFRI, etc. Sorry, but I saw pictures of CFRI with people closer than "the 3 food rule." I can't imagine taking that risk. You never know what the culture wasn't able to grow out. Remember, you are only taking a "part" of the flora that lives in your lungs for culture. The MRSA or multi-drug resistant pseudomonas could have evaded being cultured.
I know I sound paranoid, but I want to stay as healthy as I can and not risk getting anything else that could also cause harm to my sister with CF.
I know that emotional support is big so I can see why CF people want to gather together. To me, the risk is too great. I have the emotional support I need from a few friends (some are my coworkers in the hospital). True, they don't know the depths of what CF can do on a daily basis, but a couple of them have cared for end-stage CF children and understand the fatality of this disease.
So, I would avoid support groups. Online groups are not the same, but the infection risk is nil.
Jenn
31 yo cf
I beg to differ. Being around kids is very different than being around other CF people. Children (normal healthy ones) do not routinely carry around cultured bacteria in their respiratory tract. I would rather be exposed to a virus from a child than another strain of pseudomonas that is going to set up a home in my lungs and can cause ongoing problems.
I haven't been to a support group in 20 years. I did tae kwon do and breathing exercises with my old CF clinic when I was a young child. I shudder now when I think of how we were all around each other and people coughing, etc. No one really knew better back then. Heck, my siblings and I even went one year to camp.
Yes, we have a cruel disease that does not permit us to hang around each other and receive support that way. Yes, there are ways around it with having "good cultures" that allow you to attend CFRI, etc. Sorry, but I saw pictures of CFRI with people closer than "the 3 food rule." I can't imagine taking that risk. You never know what the culture wasn't able to grow out. Remember, you are only taking a "part" of the flora that lives in your lungs for culture. The MRSA or multi-drug resistant pseudomonas could have evaded being cultured.
I know I sound paranoid, but I want to stay as healthy as I can and not risk getting anything else that could also cause harm to my sister with CF.
I know that emotional support is big so I can see why CF people want to gather together. To me, the risk is too great. I have the emotional support I need from a few friends (some are my coworkers in the hospital). True, they don't know the depths of what CF can do on a daily basis, but a couple of them have cared for end-stage CF children and understand the fatality of this disease.
So, I would avoid support groups. Online groups are not the same, but the infection risk is nil.
Jenn
31 yo cf
PedsNP2007
New member
Meg,
I beg to differ. Being around kids is very different than being around other CF people. Children (normal healthy ones) do not routinely carry around cultured bacteria in their respiratory tract. I would rather be exposed to a virus from a child than another strain of pseudomonas that is going to set up a home in my lungs and can cause ongoing problems.
I haven't been to a support group in 20 years. I did tae kwon do and breathing exercises with my old CF clinic when I was a young child. I shudder now when I think of how we were all around each other and people coughing, etc. No one really knew better back then. Heck, my siblings and I even went one year to camp.
Yes, we have a cruel disease that does not permit us to hang around each other and receive support that way. Yes, there are ways around it with having "good cultures" that allow you to attend CFRI, etc. Sorry, but I saw pictures of CFRI with people closer than "the 3 food rule." I can't imagine taking that risk. You never know what the culture wasn't able to grow out. Remember, you are only taking a "part" of the flora that lives in your lungs for culture. The MRSA or multi-drug resistant pseudomonas could have evaded being cultured.
I know I sound paranoid, but I want to stay as healthy as I can and not risk getting anything else that could also cause harm to my sister with CF.
I know that emotional support is big so I can see why CF people want to gather together. To me, the risk is too great. I have the emotional support I need from a few friends (some are my coworkers in the hospital). True, they don't know the depths of what CF can do on a daily basis, but a couple of them have cared for end-stage CF children and understand the fatality of this disease.
So, I would avoid support groups. Online groups are not the same, but the infection risk is nil.
Jenn
31 yo cf
I beg to differ. Being around kids is very different than being around other CF people. Children (normal healthy ones) do not routinely carry around cultured bacteria in their respiratory tract. I would rather be exposed to a virus from a child than another strain of pseudomonas that is going to set up a home in my lungs and can cause ongoing problems.
I haven't been to a support group in 20 years. I did tae kwon do and breathing exercises with my old CF clinic when I was a young child. I shudder now when I think of how we were all around each other and people coughing, etc. No one really knew better back then. Heck, my siblings and I even went one year to camp.
Yes, we have a cruel disease that does not permit us to hang around each other and receive support that way. Yes, there are ways around it with having "good cultures" that allow you to attend CFRI, etc. Sorry, but I saw pictures of CFRI with people closer than "the 3 food rule." I can't imagine taking that risk. You never know what the culture wasn't able to grow out. Remember, you are only taking a "part" of the flora that lives in your lungs for culture. The MRSA or multi-drug resistant pseudomonas could have evaded being cultured.
I know I sound paranoid, but I want to stay as healthy as I can and not risk getting anything else that could also cause harm to my sister with CF.
I know that emotional support is big so I can see why CF people want to gather together. To me, the risk is too great. I have the emotional support I need from a few friends (some are my coworkers in the hospital). True, they don't know the depths of what CF can do on a daily basis, but a couple of them have cared for end-stage CF children and understand the fatality of this disease.
So, I would avoid support groups. Online groups are not the same, but the infection risk is nil.
Jenn
31 yo cf
PedsNP2007
New member
Meg,
I beg to differ. Being around kids is very different than being around other CF people. Children (normal healthy ones) do not routinely carry around cultured bacteria in their respiratory tract. I would rather be exposed to a virus from a child than another strain of pseudomonas that is going to set up a home in my lungs and can cause ongoing problems.
I haven't been to a support group in 20 years. I did tae kwon do and breathing exercises with my old CF clinic when I was a young child. I shudder now when I think of how we were all around each other and people coughing, etc. No one really knew better back then. Heck, my siblings and I even went one year to camp.
Yes, we have a cruel disease that does not permit us to hang around each other and receive support that way. Yes, there are ways around it with having "good cultures" that allow you to attend CFRI, etc. Sorry, but I saw pictures of CFRI with people closer than "the 3 food rule." I can't imagine taking that risk. You never know what the culture wasn't able to grow out. Remember, you are only taking a "part" of the flora that lives in your lungs for culture. The MRSA or multi-drug resistant pseudomonas could have evaded being cultured.
I know I sound paranoid, but I want to stay as healthy as I can and not risk getting anything else that could also cause harm to my sister with CF.
I know that emotional support is big so I can see why CF people want to gather together. To me, the risk is too great. I have the emotional support I need from a few friends (some are my coworkers in the hospital). True, they don't know the depths of what CF can do on a daily basis, but a couple of them have cared for end-stage CF children and understand the fatality of this disease.
So, I would avoid support groups. Online groups are not the same, but the infection risk is nil.
Jenn
31 yo cf
I beg to differ. Being around kids is very different than being around other CF people. Children (normal healthy ones) do not routinely carry around cultured bacteria in their respiratory tract. I would rather be exposed to a virus from a child than another strain of pseudomonas that is going to set up a home in my lungs and can cause ongoing problems.
I haven't been to a support group in 20 years. I did tae kwon do and breathing exercises with my old CF clinic when I was a young child. I shudder now when I think of how we were all around each other and people coughing, etc. No one really knew better back then. Heck, my siblings and I even went one year to camp.
Yes, we have a cruel disease that does not permit us to hang around each other and receive support that way. Yes, there are ways around it with having "good cultures" that allow you to attend CFRI, etc. Sorry, but I saw pictures of CFRI with people closer than "the 3 food rule." I can't imagine taking that risk. You never know what the culture wasn't able to grow out. Remember, you are only taking a "part" of the flora that lives in your lungs for culture. The MRSA or multi-drug resistant pseudomonas could have evaded being cultured.
I know I sound paranoid, but I want to stay as healthy as I can and not risk getting anything else that could also cause harm to my sister with CF.
I know that emotional support is big so I can see why CF people want to gather together. To me, the risk is too great. I have the emotional support I need from a few friends (some are my coworkers in the hospital). True, they don't know the depths of what CF can do on a daily basis, but a couple of them have cared for end-stage CF children and understand the fatality of this disease.
So, I would avoid support groups. Online groups are not the same, but the infection risk is nil.
Jenn
31 yo cf
PedsNP2007
New member
Meg,
I beg to differ. Being around kids is very different than being around other CF people. Children (normal healthy ones) do not routinely carry around cultured bacteria in their respiratory tract. I would rather be exposed to a virus from a child than another strain of pseudomonas that is going to set up a home in my lungs and can cause ongoing problems.
I haven't been to a support group in 20 years. I did tae kwon do and breathing exercises with my old CF clinic when I was a young child. I shudder now when I think of how we were all around each other and people coughing, etc. No one really knew better back then. Heck, my siblings and I even went one year to camp.
Yes, we have a cruel disease that does not permit us to hang around each other and receive support that way. Yes, there are ways around it with having "good cultures" that allow you to attend CFRI, etc. Sorry, but I saw pictures of CFRI with people closer than "the 3 food rule." I can't imagine taking that risk. You never know what the culture wasn't able to grow out. Remember, you are only taking a "part" of the flora that lives in your lungs for culture. The MRSA or multi-drug resistant pseudomonas could have evaded being cultured.
I know I sound paranoid, but I want to stay as healthy as I can and not risk getting anything else that could also cause harm to my sister with CF.
I know that emotional support is big so I can see why CF people want to gather together. To me, the risk is too great. I have the emotional support I need from a few friends (some are my coworkers in the hospital). True, they don't know the depths of what CF can do on a daily basis, but a couple of them have cared for end-stage CF children and understand the fatality of this disease.
So, I would avoid support groups. Online groups are not the same, but the infection risk is nil.
Jenn
31 yo cf
I beg to differ. Being around kids is very different than being around other CF people. Children (normal healthy ones) do not routinely carry around cultured bacteria in their respiratory tract. I would rather be exposed to a virus from a child than another strain of pseudomonas that is going to set up a home in my lungs and can cause ongoing problems.
I haven't been to a support group in 20 years. I did tae kwon do and breathing exercises with my old CF clinic when I was a young child. I shudder now when I think of how we were all around each other and people coughing, etc. No one really knew better back then. Heck, my siblings and I even went one year to camp.
Yes, we have a cruel disease that does not permit us to hang around each other and receive support that way. Yes, there are ways around it with having "good cultures" that allow you to attend CFRI, etc. Sorry, but I saw pictures of CFRI with people closer than "the 3 food rule." I can't imagine taking that risk. You never know what the culture wasn't able to grow out. Remember, you are only taking a "part" of the flora that lives in your lungs for culture. The MRSA or multi-drug resistant pseudomonas could have evaded being cultured.
I know I sound paranoid, but I want to stay as healthy as I can and not risk getting anything else that could also cause harm to my sister with CF.
I know that emotional support is big so I can see why CF people want to gather together. To me, the risk is too great. I have the emotional support I need from a few friends (some are my coworkers in the hospital). True, they don't know the depths of what CF can do on a daily basis, but a couple of them have cared for end-stage CF children and understand the fatality of this disease.
So, I would avoid support groups. Online groups are not the same, but the infection risk is nil.
Jenn
31 yo cf
PedsNP2007
New member
Meg,
<br />
<br />I beg to differ. Being around kids is very different than being around other CF people. Children (normal healthy ones) do not routinely carry around cultured bacteria in their respiratory tract. I would rather be exposed to a virus from a child than another strain of pseudomonas that is going to set up a home in my lungs and can cause ongoing problems.
<br />
<br />I haven't been to a support group in 20 years. I did tae kwon do and breathing exercises with my old CF clinic when I was a young child. I shudder now when I think of how we were all around each other and people coughing, etc. No one really knew better back then. Heck, my siblings and I even went one year to camp.
<br />
<br />Yes, we have a cruel disease that does not permit us to hang around each other and receive support that way. Yes, there are ways around it with having "good cultures" that allow you to attend CFRI, etc. Sorry, but I saw pictures of CFRI with people closer than "the 3 food rule." I can't imagine taking that risk. You never know what the culture wasn't able to grow out. Remember, you are only taking a "part" of the flora that lives in your lungs for culture. The MRSA or multi-drug resistant pseudomonas could have evaded being cultured.
<br />
<br />I know I sound paranoid, but I want to stay as healthy as I can and not risk getting anything else that could also cause harm to my sister with CF.
<br />
<br />I know that emotional support is big so I can see why CF people want to gather together. To me, the risk is too great. I have the emotional support I need from a few friends (some are my coworkers in the hospital). True, they don't know the depths of what CF can do on a daily basis, but a couple of them have cared for end-stage CF children and understand the fatality of this disease.
<br />
<br />So, I would avoid support groups. Online groups are not the same, but the infection risk is nil.
<br />
<br />Jenn
<br />31 yo cf
<br />
<br />I beg to differ. Being around kids is very different than being around other CF people. Children (normal healthy ones) do not routinely carry around cultured bacteria in their respiratory tract. I would rather be exposed to a virus from a child than another strain of pseudomonas that is going to set up a home in my lungs and can cause ongoing problems.
<br />
<br />I haven't been to a support group in 20 years. I did tae kwon do and breathing exercises with my old CF clinic when I was a young child. I shudder now when I think of how we were all around each other and people coughing, etc. No one really knew better back then. Heck, my siblings and I even went one year to camp.
<br />
<br />Yes, we have a cruel disease that does not permit us to hang around each other and receive support that way. Yes, there are ways around it with having "good cultures" that allow you to attend CFRI, etc. Sorry, but I saw pictures of CFRI with people closer than "the 3 food rule." I can't imagine taking that risk. You never know what the culture wasn't able to grow out. Remember, you are only taking a "part" of the flora that lives in your lungs for culture. The MRSA or multi-drug resistant pseudomonas could have evaded being cultured.
<br />
<br />I know I sound paranoid, but I want to stay as healthy as I can and not risk getting anything else that could also cause harm to my sister with CF.
<br />
<br />I know that emotional support is big so I can see why CF people want to gather together. To me, the risk is too great. I have the emotional support I need from a few friends (some are my coworkers in the hospital). True, they don't know the depths of what CF can do on a daily basis, but a couple of them have cared for end-stage CF children and understand the fatality of this disease.
<br />
<br />So, I would avoid support groups. Online groups are not the same, but the infection risk is nil.
<br />
<br />Jenn
<br />31 yo cf