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Frustration with a friend'

SandyCheeks

New member
I am around alot of CFers and am wondering sure that I have been an idiot at times (not purposefuly). Can any of you tell me what kinds of things are appropriate to say or talk about with someone who you would know has the disease. What types of people make you feel encouraged, or okay with talking about cf? Sometimes I feel as though there is a white elephant in the room and it would be helpful to talk about it. Any suggestions
 

SandyCheeks

New member
I am around alot of CFers and am wondering sure that I have been an idiot at times (not purposefuly). Can any of you tell me what kinds of things are appropriate to say or talk about with someone who you would know has the disease. What types of people make you feel encouraged, or okay with talking about cf? Sometimes I feel as though there is a white elephant in the room and it would be helpful to talk about it. Any suggestions
 

SandyCheeks

New member
I am around alot of CFers and am wondering sure that I have been an idiot at times (not purposefuly). Can any of you tell me what kinds of things are appropriate to say or talk about with someone who you would know has the disease. What types of people make you feel encouraged, or okay with talking about cf? Sometimes I feel as though there is a white elephant in the room and it would be helpful to talk about it. Any suggestions
 

SandyCheeks

New member
I am around alot of CFers and am wondering sure that I have been an idiot at times (not purposefuly). Can any of you tell me what kinds of things are appropriate to say or talk about with someone who you would know has the disease. What types of people make you feel encouraged, or okay with talking about cf? Sometimes I feel as though there is a white elephant in the room and it would be helpful to talk about it. Any suggestions
 

SandyCheeks

New member
I am around alot of CFers and am wondering sure that I have been an idiot at times (not purposefuly). Can any of you tell me what kinds of things are appropriate to say or talk about with someone who you would know has the disease. What types of people make you feel encouraged, or okay with talking about cf? Sometimes I feel as though there is a white elephant in the room and it would be helpful to talk about it. Any suggestions
 

maelstrom

New member
Hi Piper - I definitely see where you are coming from now. I can only imagine that it would be seriously frustrating to deal with that "well if you just tried harder" attitude when you already are trying really hard. The difference with my husband is that he is not trying hard... he's pretty much non-compliant for any treatments, other than exercise. His attitude tends to be "well I'm just going to get sick in the end anyway, so what's the point in bothering with these therapies?" That type of pessimism drives me crazy! I have pretty much given up arguing with him about it, and I try to respect his feeling on CF, realizing that he's been dealing with this his whole life.

That said, I really would like to change his mind, and I've been trying to think of ways to do this without just annoying him. I actually started putting together a website with information on all the newest therapies.. supposed to be a "scientific" way of looking at things with an optimistic perspective, since he also is an engineer who likes to look at numbers and facts. After reading your post and the responses to it that optimism can be really frustrating to CFers, I sorta freaked out that maybe the website is a bad idea and will just annoy people instead of helping. I hope not.

Anyway sorry to get off topic - in regards to your initial post, I also noticed that the 'optimist' was answering in response to someone being surprised at your age. I've had similar experiences - recently after doing a CFF fundraiser, we mentioned to someone we'd just met that that's where we'd been - this person started going on about how CF is such a horrible disease and it's so sad etc etc etc. We both kept quiet but in my head I got angry and wanted to tell her that there's been so much progress she doesn't know about. Same thing happened in my physiology class when the professor was talking about CF as a childhood disease and that people don't live into their teens... again I got mad and wanted to tell him he didn't know what he was talking about. (I didn't say anything.) I think this reaction is because these people who don't necessarily know anything about CF other than it being a fatal disease often express their thoughts in a way that it strikes a chord with all the fears that I try to surpress. "What do you mean it's a horrible disease?? My husband isn't going to die any time soon, so whatever!!!" Ha. It's just a defensive response. So, maybe your friend felt something similar, and her defensive reaction was to shoot back that people with CF can live just fine if they do these new treatments. I don't know. Just my perspective, again - sorry for being so long winded!
 

maelstrom

New member
Hi Piper - I definitely see where you are coming from now. I can only imagine that it would be seriously frustrating to deal with that "well if you just tried harder" attitude when you already are trying really hard. The difference with my husband is that he is not trying hard... he's pretty much non-compliant for any treatments, other than exercise. His attitude tends to be "well I'm just going to get sick in the end anyway, so what's the point in bothering with these therapies?" That type of pessimism drives me crazy! I have pretty much given up arguing with him about it, and I try to respect his feeling on CF, realizing that he's been dealing with this his whole life.

That said, I really would like to change his mind, and I've been trying to think of ways to do this without just annoying him. I actually started putting together a website with information on all the newest therapies.. supposed to be a "scientific" way of looking at things with an optimistic perspective, since he also is an engineer who likes to look at numbers and facts. After reading your post and the responses to it that optimism can be really frustrating to CFers, I sorta freaked out that maybe the website is a bad idea and will just annoy people instead of helping. I hope not.

Anyway sorry to get off topic - in regards to your initial post, I also noticed that the 'optimist' was answering in response to someone being surprised at your age. I've had similar experiences - recently after doing a CFF fundraiser, we mentioned to someone we'd just met that that's where we'd been - this person started going on about how CF is such a horrible disease and it's so sad etc etc etc. We both kept quiet but in my head I got angry and wanted to tell her that there's been so much progress she doesn't know about. Same thing happened in my physiology class when the professor was talking about CF as a childhood disease and that people don't live into their teens... again I got mad and wanted to tell him he didn't know what he was talking about. (I didn't say anything.) I think this reaction is because these people who don't necessarily know anything about CF other than it being a fatal disease often express their thoughts in a way that it strikes a chord with all the fears that I try to surpress. "What do you mean it's a horrible disease?? My husband isn't going to die any time soon, so whatever!!!" Ha. It's just a defensive response. So, maybe your friend felt something similar, and her defensive reaction was to shoot back that people with CF can live just fine if they do these new treatments. I don't know. Just my perspective, again - sorry for being so long winded!
 

maelstrom

New member
Hi Piper - I definitely see where you are coming from now. I can only imagine that it would be seriously frustrating to deal with that "well if you just tried harder" attitude when you already are trying really hard. The difference with my husband is that he is not trying hard... he's pretty much non-compliant for any treatments, other than exercise. His attitude tends to be "well I'm just going to get sick in the end anyway, so what's the point in bothering with these therapies?" That type of pessimism drives me crazy! I have pretty much given up arguing with him about it, and I try to respect his feeling on CF, realizing that he's been dealing with this his whole life.

That said, I really would like to change his mind, and I've been trying to think of ways to do this without just annoying him. I actually started putting together a website with information on all the newest therapies.. supposed to be a "scientific" way of looking at things with an optimistic perspective, since he also is an engineer who likes to look at numbers and facts. After reading your post and the responses to it that optimism can be really frustrating to CFers, I sorta freaked out that maybe the website is a bad idea and will just annoy people instead of helping. I hope not.

Anyway sorry to get off topic - in regards to your initial post, I also noticed that the 'optimist' was answering in response to someone being surprised at your age. I've had similar experiences - recently after doing a CFF fundraiser, we mentioned to someone we'd just met that that's where we'd been - this person started going on about how CF is such a horrible disease and it's so sad etc etc etc. We both kept quiet but in my head I got angry and wanted to tell her that there's been so much progress she doesn't know about. Same thing happened in my physiology class when the professor was talking about CF as a childhood disease and that people don't live into their teens... again I got mad and wanted to tell him he didn't know what he was talking about. (I didn't say anything.) I think this reaction is because these people who don't necessarily know anything about CF other than it being a fatal disease often express their thoughts in a way that it strikes a chord with all the fears that I try to surpress. "What do you mean it's a horrible disease?? My husband isn't going to die any time soon, so whatever!!!" Ha. It's just a defensive response. So, maybe your friend felt something similar, and her defensive reaction was to shoot back that people with CF can live just fine if they do these new treatments. I don't know. Just my perspective, again - sorry for being so long winded!
 

maelstrom

New member
Hi Piper - I definitely see where you are coming from now. I can only imagine that it would be seriously frustrating to deal with that "well if you just tried harder" attitude when you already are trying really hard. The difference with my husband is that he is not trying hard... he's pretty much non-compliant for any treatments, other than exercise. His attitude tends to be "well I'm just going to get sick in the end anyway, so what's the point in bothering with these therapies?" That type of pessimism drives me crazy! I have pretty much given up arguing with him about it, and I try to respect his feeling on CF, realizing that he's been dealing with this his whole life.

That said, I really would like to change his mind, and I've been trying to think of ways to do this without just annoying him. I actually started putting together a website with information on all the newest therapies.. supposed to be a "scientific" way of looking at things with an optimistic perspective, since he also is an engineer who likes to look at numbers and facts. After reading your post and the responses to it that optimism can be really frustrating to CFers, I sorta freaked out that maybe the website is a bad idea and will just annoy people instead of helping. I hope not.

Anyway sorry to get off topic - in regards to your initial post, I also noticed that the 'optimist' was answering in response to someone being surprised at your age. I've had similar experiences - recently after doing a CFF fundraiser, we mentioned to someone we'd just met that that's where we'd been - this person started going on about how CF is such a horrible disease and it's so sad etc etc etc. We both kept quiet but in my head I got angry and wanted to tell her that there's been so much progress she doesn't know about. Same thing happened in my physiology class when the professor was talking about CF as a childhood disease and that people don't live into their teens... again I got mad and wanted to tell him he didn't know what he was talking about. (I didn't say anything.) I think this reaction is because these people who don't necessarily know anything about CF other than it being a fatal disease often express their thoughts in a way that it strikes a chord with all the fears that I try to surpress. "What do you mean it's a horrible disease?? My husband isn't going to die any time soon, so whatever!!!" Ha. It's just a defensive response. So, maybe your friend felt something similar, and her defensive reaction was to shoot back that people with CF can live just fine if they do these new treatments. I don't know. Just my perspective, again - sorry for being so long winded!
 

maelstrom

New member
Hi Piper - I definitely see where you are coming from now. I can only imagine that it would be seriously frustrating to deal with that "well if you just tried harder" attitude when you already are trying really hard. The difference with my husband is that he is not trying hard... he's pretty much non-compliant for any treatments, other than exercise. His attitude tends to be "well I'm just going to get sick in the end anyway, so what's the point in bothering with these therapies?" That type of pessimism drives me crazy! I have pretty much given up arguing with him about it, and I try to respect his feeling on CF, realizing that he's been dealing with this his whole life.
<br />
<br />That said, I really would like to change his mind, and I've been trying to think of ways to do this without just annoying him. I actually started putting together a website with information on all the newest therapies.. supposed to be a "scientific" way of looking at things with an optimistic perspective, since he also is an engineer who likes to look at numbers and facts. After reading your post and the responses to it that optimism can be really frustrating to CFers, I sorta freaked out that maybe the website is a bad idea and will just annoy people instead of helping. I hope not.
<br />
<br />Anyway sorry to get off topic - in regards to your initial post, I also noticed that the 'optimist' was answering in response to someone being surprised at your age. I've had similar experiences - recently after doing a CFF fundraiser, we mentioned to someone we'd just met that that's where we'd been - this person started going on about how CF is such a horrible disease and it's so sad etc etc etc. We both kept quiet but in my head I got angry and wanted to tell her that there's been so much progress she doesn't know about. Same thing happened in my physiology class when the professor was talking about CF as a childhood disease and that people don't live into their teens... again I got mad and wanted to tell him he didn't know what he was talking about. (I didn't say anything.) I think this reaction is because these people who don't necessarily know anything about CF other than it being a fatal disease often express their thoughts in a way that it strikes a chord with all the fears that I try to surpress. "What do you mean it's a horrible disease?? My husband isn't going to die any time soon, so whatever!!!" Ha. It's just a defensive response. So, maybe your friend felt something similar, and her defensive reaction was to shoot back that people with CF can live just fine if they do these new treatments. I don't know. Just my perspective, again - sorry for being so long winded!
 

SaltyAndSweet

New member
Maelstrom, I am learning a lot from you today! Thank you. Personally, being a blogger myself, I really like your idea of putting together a website about new therapies. If you get really geeky/technical about it, I am sure your engineer husband may show interest in it... (I'm an engineer too!) But aside from your husband and I, no doubt a site like that would help a lot of other people too. I think you should go for it! As far as being annoying, don't push anything on him or your readers. Try to stick to the facts and allow the reader to make an educated decision. Let your husband know what you are up to and if he is mentally ready, he will listen. Also try to not discredit readers if their way isn't your way.

The hardest thing I am finding as my health declines is the struggle to balance happiness and CF. CF is becoming a much larger influence in my life, and as that happens there is less time in the day to spend doing things that make me happy. I can't find a way to make the two of them coexist. To me it is that fine line of quality of life vs. therapy. I am in a constant struggle to find it and I know I am not the only one here. Also, I hope I don't upset anyone here by saying this, but just because there are therapies to help us live longer, doesn't change the fact that this IS a horrible disease to deal/live with. Yes we are living longer, but we have to give up a lot to do so. I hope that may shed a little light on my frustrations at least.
 

SaltyAndSweet

New member
Maelstrom, I am learning a lot from you today! Thank you. Personally, being a blogger myself, I really like your idea of putting together a website about new therapies. If you get really geeky/technical about it, I am sure your engineer husband may show interest in it... (I'm an engineer too!) But aside from your husband and I, no doubt a site like that would help a lot of other people too. I think you should go for it! As far as being annoying, don't push anything on him or your readers. Try to stick to the facts and allow the reader to make an educated decision. Let your husband know what you are up to and if he is mentally ready, he will listen. Also try to not discredit readers if their way isn't your way.

The hardest thing I am finding as my health declines is the struggle to balance happiness and CF. CF is becoming a much larger influence in my life, and as that happens there is less time in the day to spend doing things that make me happy. I can't find a way to make the two of them coexist. To me it is that fine line of quality of life vs. therapy. I am in a constant struggle to find it and I know I am not the only one here. Also, I hope I don't upset anyone here by saying this, but just because there are therapies to help us live longer, doesn't change the fact that this IS a horrible disease to deal/live with. Yes we are living longer, but we have to give up a lot to do so. I hope that may shed a little light on my frustrations at least.
 

SaltyAndSweet

New member
Maelstrom, I am learning a lot from you today! Thank you. Personally, being a blogger myself, I really like your idea of putting together a website about new therapies. If you get really geeky/technical about it, I am sure your engineer husband may show interest in it... (I'm an engineer too!) But aside from your husband and I, no doubt a site like that would help a lot of other people too. I think you should go for it! As far as being annoying, don't push anything on him or your readers. Try to stick to the facts and allow the reader to make an educated decision. Let your husband know what you are up to and if he is mentally ready, he will listen. Also try to not discredit readers if their way isn't your way.

The hardest thing I am finding as my health declines is the struggle to balance happiness and CF. CF is becoming a much larger influence in my life, and as that happens there is less time in the day to spend doing things that make me happy. I can't find a way to make the two of them coexist. To me it is that fine line of quality of life vs. therapy. I am in a constant struggle to find it and I know I am not the only one here. Also, I hope I don't upset anyone here by saying this, but just because there are therapies to help us live longer, doesn't change the fact that this IS a horrible disease to deal/live with. Yes we are living longer, but we have to give up a lot to do so. I hope that may shed a little light on my frustrations at least.
 

SaltyAndSweet

New member
Maelstrom, I am learning a lot from you today! Thank you. Personally, being a blogger myself, I really like your idea of putting together a website about new therapies. If you get really geeky/technical about it, I am sure your engineer husband may show interest in it... (I'm an engineer too!) But aside from your husband and I, no doubt a site like that would help a lot of other people too. I think you should go for it! As far as being annoying, don't push anything on him or your readers. Try to stick to the facts and allow the reader to make an educated decision. Let your husband know what you are up to and if he is mentally ready, he will listen. Also try to not discredit readers if their way isn't your way.

The hardest thing I am finding as my health declines is the struggle to balance happiness and CF. CF is becoming a much larger influence in my life, and as that happens there is less time in the day to spend doing things that make me happy. I can't find a way to make the two of them coexist. To me it is that fine line of quality of life vs. therapy. I am in a constant struggle to find it and I know I am not the only one here. Also, I hope I don't upset anyone here by saying this, but just because there are therapies to help us live longer, doesn't change the fact that this IS a horrible disease to deal/live with. Yes we are living longer, but we have to give up a lot to do so. I hope that may shed a little light on my frustrations at least.
 

SaltyAndSweet

New member
Maelstrom, I am learning a lot from you today! Thank you. Personally, being a blogger myself, I really like your idea of putting together a website about new therapies. If you get really geeky/technical about it, I am sure your engineer husband may show interest in it... (I'm an engineer too!) But aside from your husband and I, no doubt a site like that would help a lot of other people too. I think you should go for it! As far as being annoying, don't push anything on him or your readers. Try to stick to the facts and allow the reader to make an educated decision. Let your husband know what you are up to and if he is mentally ready, he will listen. Also try to not discredit readers if their way isn't your way.
<br />
<br />The hardest thing I am finding as my health declines is the struggle to balance happiness and CF. CF is becoming a much larger influence in my life, and as that happens there is less time in the day to spend doing things that make me happy. I can't find a way to make the two of them coexist. To me it is that fine line of quality of life vs. therapy. I am in a constant struggle to find it and I know I am not the only one here. Also, I hope I don't upset anyone here by saying this, but just because there are therapies to help us live longer, doesn't change the fact that this IS a horrible disease to deal/live with. Yes we are living longer, but we have to give up a lot to do so. I hope that may shed a little light on my frustrations at least.
 

SaltyAndSweet

New member
Oh! and NYCLawGirl thank you for posting about this. It's helping me get through a rough patch right now. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

SaltyAndSweet

New member
Oh! and NYCLawGirl thank you for posting about this. It's helping me get through a rough patch right now. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

SaltyAndSweet

New member
Oh! and NYCLawGirl thank you for posting about this. It's helping me get through a rough patch right now. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

SaltyAndSweet

New member
Oh! and NYCLawGirl thank you for posting about this. It's helping me get through a rough patch right now. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

SaltyAndSweet

New member
Oh! and NYCLawGirl thank you for posting about this. It's helping me get through a rough patch right now. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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