How do you........

R

Ratatosk

Administrator
Staff member
In that situation, I guess I'd explain that there is a LOT of information online and in the library that is outdated. A well-meaning friend once gave me a book on CF and it had been reprinted so many times and the info was pre-1997 -- so life expectancy was signficantly less, no such thing as tobi, so pseudomonas was described as life ending...

I usually explain that we work hard at keeping DS healthy with 3-4 vest/cpt treatments daily, nebulized drugs, proper nutrition, vitamins and other meds in the hopes that he doesn't get sick. That DS is still a normal, active child, who needs some extra things to keep him that way.
 
R

Ratatosk

Administrator
Staff member
In that situation, I guess I'd explain that there is a LOT of information online and in the library that is outdated. A well-meaning friend once gave me a book on CF and it had been reprinted so many times and the info was pre-1997 -- so life expectancy was signficantly less, no such thing as tobi, so pseudomonas was described as life ending...

I usually explain that we work hard at keeping DS healthy with 3-4 vest/cpt treatments daily, nebulized drugs, proper nutrition, vitamins and other meds in the hopes that he doesn't get sick. That DS is still a normal, active child, who needs some extra things to keep him that way.
 
R

Ratatosk

Administrator
Staff member
In that situation, I guess I'd explain that there is a LOT of information online and in the library that is outdated. A well-meaning friend once gave me a book on CF and it had been reprinted so many times and the info was pre-1997 -- so life expectancy was signficantly less, no such thing as tobi, so pseudomonas was described as life ending...

I usually explain that we work hard at keeping DS healthy with 3-4 vest/cpt treatments daily, nebulized drugs, proper nutrition, vitamins and other meds in the hopes that he doesn't get sick. That DS is still a normal, active child, who needs some extra things to keep him that way.
 
R

Ratatosk

Administrator
Staff member
In that situation, I guess I'd explain that there is a LOT of information online and in the library that is outdated. A well-meaning friend once gave me a book on CF and it had been reprinted so many times and the info was pre-1997 -- so life expectancy was signficantly less, no such thing as tobi, so pseudomonas was described as life ending...

I usually explain that we work hard at keeping DS healthy with 3-4 vest/cpt treatments daily, nebulized drugs, proper nutrition, vitamins and other meds in the hopes that he doesn't get sick. That DS is still a normal, active child, who needs some extra things to keep him that way.
 
R

Ratatosk

Administrator
Staff member
In that situation, I guess I'd explain that there is a LOT of information online and in the library that is outdated. A well-meaning friend once gave me a book on CF and it had been reprinted so many times and the info was pre-1997 -- so life expectancy was signficantly less, no such thing as tobi, so pseudomonas was described as life ending...
<br />
<br />I usually explain that we work hard at keeping DS healthy with 3-4 vest/cpt treatments daily, nebulized drugs, proper nutrition, vitamins and other meds in the hopes that he doesn't get sick. That DS is still a normal, active child, who needs some extra things to keep him that way.
 
M

MicheleGazelle

New member
I don't know if any of this can be adapted to other situations, but here are some situations I have been in and some things I did that were fairly effective:

When I was still extremely ill and newly diagnosed, my kids were asking me up to 40 times a day "How do you feel?" At some point, I began snarkily saying "I am going to start a website and post my hourly and minutely updates on how I FEEL in both German and Spanish so that all this fretting will at least be educational." After that, they only asked me about 5 or 6 times a day. <img src="i/expressions/face-icon-small-smile.gif" border="0"> My oldest son's explanation: once I became sarcastic, he figured I was getting back to my old self and, yes, mostly likely I would live. <img src="i/expressions/face-icon-small-smile.gif" border="0">

At some point, I had a serious discussion with my kids about how this totally sucked and I was facing a long, hard, miserable recovery but I <b>would</b> live. So please quit freaking out over every little cough. I need my energy to take care of myself and answering constant questions about how I feel only sucks away my energy.

A few years ago, a man I knew learned I have CF and started on the pity party routine. I asked him if I should feel sorry for him for having been born male since he doesn't know what it's like to be female. I told him I was BORN this way and I don't know what it's like to be any other way. This is just how it is. And life with a diagnosis is so much better than life without one. He never brought it up again.

I have told people that I really needed their sympathy a lot more when I didn't have a diagnosis and everyone just thought I was "lazy" and "difficult" and "wouldn't be sick all the time if I would just eat my vegetables". Having a diagnosis gets me a lot of pity but I am really a lot better off since I was finally correctly diagnosed. Not having a diagnosis just got me crapped on by people who had ridiculous, unrealistic expectations of me.

I have told people I don't need anyone's pity. It does nothing to enhance my life. But I do deeply appreciate compassion for the things I struggle with, patience and tolerance when I make an arse of myself because of medication issues and/or just not feeling well, and so forth.

I try to have patience with people who have just learned something "big" about me and are overwhelmed but I refuse to get dragged into their emotional swirl. It is <b>their</b> emotional stuff, not mine. I already came to grips with this stuff. I don't need emotional fixing and I really don't have the time or energy to get sucked into their emotional reaction to this "news". It isn't news to me. I already know and have known for some time. I respect the fact that it can be tough to swallow, but I do my best to make sure they understand it is THEM that is having a hard time swallowing it, not me.

Peace and good luck with this.
 
M

MicheleGazelle

New member
I don't know if any of this can be adapted to other situations, but here are some situations I have been in and some things I did that were fairly effective:

When I was still extremely ill and newly diagnosed, my kids were asking me up to 40 times a day "How do you feel?" At some point, I began snarkily saying "I am going to start a website and post my hourly and minutely updates on how I FEEL in both German and Spanish so that all this fretting will at least be educational." After that, they only asked me about 5 or 6 times a day. <img src="i/expressions/face-icon-small-smile.gif" border="0"> My oldest son's explanation: once I became sarcastic, he figured I was getting back to my old self and, yes, mostly likely I would live. <img src="i/expressions/face-icon-small-smile.gif" border="0">

At some point, I had a serious discussion with my kids about how this totally sucked and I was facing a long, hard, miserable recovery but I <b>would</b> live. So please quit freaking out over every little cough. I need my energy to take care of myself and answering constant questions about how I feel only sucks away my energy.

A few years ago, a man I knew learned I have CF and started on the pity party routine. I asked him if I should feel sorry for him for having been born male since he doesn't know what it's like to be female. I told him I was BORN this way and I don't know what it's like to be any other way. This is just how it is. And life with a diagnosis is so much better than life without one. He never brought it up again.

I have told people that I really needed their sympathy a lot more when I didn't have a diagnosis and everyone just thought I was "lazy" and "difficult" and "wouldn't be sick all the time if I would just eat my vegetables". Having a diagnosis gets me a lot of pity but I am really a lot better off since I was finally correctly diagnosed. Not having a diagnosis just got me crapped on by people who had ridiculous, unrealistic expectations of me.

I have told people I don't need anyone's pity. It does nothing to enhance my life. But I do deeply appreciate compassion for the things I struggle with, patience and tolerance when I make an arse of myself because of medication issues and/or just not feeling well, and so forth.

I try to have patience with people who have just learned something "big" about me and are overwhelmed but I refuse to get dragged into their emotional swirl. It is <b>their</b> emotional stuff, not mine. I already came to grips with this stuff. I don't need emotional fixing and I really don't have the time or energy to get sucked into their emotional reaction to this "news". It isn't news to me. I already know and have known for some time. I respect the fact that it can be tough to swallow, but I do my best to make sure they understand it is THEM that is having a hard time swallowing it, not me.

Peace and good luck with this.
 
M

MicheleGazelle

New member
I don't know if any of this can be adapted to other situations, but here are some situations I have been in and some things I did that were fairly effective:

When I was still extremely ill and newly diagnosed, my kids were asking me up to 40 times a day "How do you feel?" At some point, I began snarkily saying "I am going to start a website and post my hourly and minutely updates on how I FEEL in both German and Spanish so that all this fretting will at least be educational." After that, they only asked me about 5 or 6 times a day. <img src="i/expressions/face-icon-small-smile.gif" border="0"> My oldest son's explanation: once I became sarcastic, he figured I was getting back to my old self and, yes, mostly likely I would live. <img src="i/expressions/face-icon-small-smile.gif" border="0">

At some point, I had a serious discussion with my kids about how this totally sucked and I was facing a long, hard, miserable recovery but I <b>would</b> live. So please quit freaking out over every little cough. I need my energy to take care of myself and answering constant questions about how I feel only sucks away my energy.

A few years ago, a man I knew learned I have CF and started on the pity party routine. I asked him if I should feel sorry for him for having been born male since he doesn't know what it's like to be female. I told him I was BORN this way and I don't know what it's like to be any other way. This is just how it is. And life with a diagnosis is so much better than life without one. He never brought it up again.

I have told people that I really needed their sympathy a lot more when I didn't have a diagnosis and everyone just thought I was "lazy" and "difficult" and "wouldn't be sick all the time if I would just eat my vegetables". Having a diagnosis gets me a lot of pity but I am really a lot better off since I was finally correctly diagnosed. Not having a diagnosis just got me crapped on by people who had ridiculous, unrealistic expectations of me.

I have told people I don't need anyone's pity. It does nothing to enhance my life. But I do deeply appreciate compassion for the things I struggle with, patience and tolerance when I make an arse of myself because of medication issues and/or just not feeling well, and so forth.

I try to have patience with people who have just learned something "big" about me and are overwhelmed but I refuse to get dragged into their emotional swirl. It is <b>their</b> emotional stuff, not mine. I already came to grips with this stuff. I don't need emotional fixing and I really don't have the time or energy to get sucked into their emotional reaction to this "news". It isn't news to me. I already know and have known for some time. I respect the fact that it can be tough to swallow, but I do my best to make sure they understand it is THEM that is having a hard time swallowing it, not me.

Peace and good luck with this.
 
M

MicheleGazelle

New member
I don't know if any of this can be adapted to other situations, but here are some situations I have been in and some things I did that were fairly effective:

When I was still extremely ill and newly diagnosed, my kids were asking me up to 40 times a day "How do you feel?" At some point, I began snarkily saying "I am going to start a website and post my hourly and minutely updates on how I FEEL in both German and Spanish so that all this fretting will at least be educational." After that, they only asked me about 5 or 6 times a day. <img src="i/expressions/face-icon-small-smile.gif" border="0"> My oldest son's explanation: once I became sarcastic, he figured I was getting back to my old self and, yes, mostly likely I would live. <img src="i/expressions/face-icon-small-smile.gif" border="0">

At some point, I had a serious discussion with my kids about how this totally sucked and I was facing a long, hard, miserable recovery but I <b>would</b> live. So please quit freaking out over every little cough. I need my energy to take care of myself and answering constant questions about how I feel only sucks away my energy.

A few years ago, a man I knew learned I have CF and started on the pity party routine. I asked him if I should feel sorry for him for having been born male since he doesn't know what it's like to be female. I told him I was BORN this way and I don't know what it's like to be any other way. This is just how it is. And life with a diagnosis is so much better than life without one. He never brought it up again.

I have told people that I really needed their sympathy a lot more when I didn't have a diagnosis and everyone just thought I was "lazy" and "difficult" and "wouldn't be sick all the time if I would just eat my vegetables". Having a diagnosis gets me a lot of pity but I am really a lot better off since I was finally correctly diagnosed. Not having a diagnosis just got me crapped on by people who had ridiculous, unrealistic expectations of me.

I have told people I don't need anyone's pity. It does nothing to enhance my life. But I do deeply appreciate compassion for the things I struggle with, patience and tolerance when I make an arse of myself because of medication issues and/or just not feeling well, and so forth.

I try to have patience with people who have just learned something "big" about me and are overwhelmed but I refuse to get dragged into their emotional swirl. It is <b>their</b> emotional stuff, not mine. I already came to grips with this stuff. I don't need emotional fixing and I really don't have the time or energy to get sucked into their emotional reaction to this "news". It isn't news to me. I already know and have known for some time. I respect the fact that it can be tough to swallow, but I do my best to make sure they understand it is THEM that is having a hard time swallowing it, not me.

Peace and good luck with this.
 
M

MicheleGazelle

New member
I don't know if any of this can be adapted to other situations, but here are some situations I have been in and some things I did that were fairly effective:
<br />
<br />When I was still extremely ill and newly diagnosed, my kids were asking me up to 40 times a day "How do you feel?" At some point, I began snarkily saying "I am going to start a website and post my hourly and minutely updates on how I FEEL in both German and Spanish so that all this fretting will at least be educational." After that, they only asked me about 5 or 6 times a day. <img src="i/expressions/face-icon-small-smile.gif" border="0"> My oldest son's explanation: once I became sarcastic, he figured I was getting back to my old self and, yes, mostly likely I would live. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />At some point, I had a serious discussion with my kids about how this totally sucked and I was facing a long, hard, miserable recovery but I <b>would</b> live. So please quit freaking out over every little cough. I need my energy to take care of myself and answering constant questions about how I feel only sucks away my energy.
<br />
<br />A few years ago, a man I knew learned I have CF and started on the pity party routine. I asked him if I should feel sorry for him for having been born male since he doesn't know what it's like to be female. I told him I was BORN this way and I don't know what it's like to be any other way. This is just how it is. And life with a diagnosis is so much better than life without one. He never brought it up again.
<br />
<br />I have told people that I really needed their sympathy a lot more when I didn't have a diagnosis and everyone just thought I was "lazy" and "difficult" and "wouldn't be sick all the time if I would just eat my vegetables". Having a diagnosis gets me a lot of pity but I am really a lot better off since I was finally correctly diagnosed. Not having a diagnosis just got me crapped on by people who had ridiculous, unrealistic expectations of me.
<br />
<br />I have told people I don't need anyone's pity. It does nothing to enhance my life. But I do deeply appreciate compassion for the things I struggle with, patience and tolerance when I make an arse of myself because of medication issues and/or just not feeling well, and so forth.
<br />
<br />I try to have patience with people who have just learned something "big" about me and are overwhelmed but I refuse to get dragged into their emotional swirl. It is <b>their</b> emotional stuff, not mine. I already came to grips with this stuff. I don't need emotional fixing and I really don't have the time or energy to get sucked into their emotional reaction to this "news". It isn't news to me. I already know and have known for some time. I respect the fact that it can be tough to swallow, but I do my best to make sure they understand it is THEM that is having a hard time swallowing it, not me.
<br />
<br />Peace and good luck with this.
 
W

welshwitch

Guest
Hey Michelle,

I don't really have anything to add but I want to thank you for your insightful remarks re: how to react when people find out something "big" about you. It made me really rethink some of my patterns and why I try to avoid people finding out I have CF.

I have a tendancy to want to "protect" people I love from finding out my secret. For some reason, I feel like they won't be able to "handle" it or they already have enough on their plate without having to worry about me. But, at the same time, I feel really bad that I try to protect them from this truth. It's like, do I underestimate some of the people in my life from being able to be a support to me? Then, I start feeling like I am playing this weird power game with them, like those who have "earned it" I let them in on my health struggles. Those who have not, I leave them in the dark, only to find out later on their own and then I feel again responsible for their pain.

The funny thing is, the people in my life who i HAVE let in on my health issues have stuck by me thru thick and thin!

I guess ultimately I don't know how to approach the issue, as everytime I tell people about my CF it really comes out of left field and I start crying about it.....someday I'd really like to be able to discuss it calmly without being terrified of THEIR reaction.
 
W

welshwitch

Guest
Hey Michelle,

I don't really have anything to add but I want to thank you for your insightful remarks re: how to react when people find out something "big" about you. It made me really rethink some of my patterns and why I try to avoid people finding out I have CF.

I have a tendancy to want to "protect" people I love from finding out my secret. For some reason, I feel like they won't be able to "handle" it or they already have enough on their plate without having to worry about me. But, at the same time, I feel really bad that I try to protect them from this truth. It's like, do I underestimate some of the people in my life from being able to be a support to me? Then, I start feeling like I am playing this weird power game with them, like those who have "earned it" I let them in on my health struggles. Those who have not, I leave them in the dark, only to find out later on their own and then I feel again responsible for their pain.

The funny thing is, the people in my life who i HAVE let in on my health issues have stuck by me thru thick and thin!

I guess ultimately I don't know how to approach the issue, as everytime I tell people about my CF it really comes out of left field and I start crying about it.....someday I'd really like to be able to discuss it calmly without being terrified of THEIR reaction.
 
W

welshwitch

Guest
Hey Michelle,

I don't really have anything to add but I want to thank you for your insightful remarks re: how to react when people find out something "big" about you. It made me really rethink some of my patterns and why I try to avoid people finding out I have CF.

I have a tendancy to want to "protect" people I love from finding out my secret. For some reason, I feel like they won't be able to "handle" it or they already have enough on their plate without having to worry about me. But, at the same time, I feel really bad that I try to protect them from this truth. It's like, do I underestimate some of the people in my life from being able to be a support to me? Then, I start feeling like I am playing this weird power game with them, like those who have "earned it" I let them in on my health struggles. Those who have not, I leave them in the dark, only to find out later on their own and then I feel again responsible for their pain.

The funny thing is, the people in my life who i HAVE let in on my health issues have stuck by me thru thick and thin!

I guess ultimately I don't know how to approach the issue, as everytime I tell people about my CF it really comes out of left field and I start crying about it.....someday I'd really like to be able to discuss it calmly without being terrified of THEIR reaction.
 
W

welshwitch

Guest
Hey Michelle,

I don't really have anything to add but I want to thank you for your insightful remarks re: how to react when people find out something "big" about you. It made me really rethink some of my patterns and why I try to avoid people finding out I have CF.

I have a tendancy to want to "protect" people I love from finding out my secret. For some reason, I feel like they won't be able to "handle" it or they already have enough on their plate without having to worry about me. But, at the same time, I feel really bad that I try to protect them from this truth. It's like, do I underestimate some of the people in my life from being able to be a support to me? Then, I start feeling like I am playing this weird power game with them, like those who have "earned it" I let them in on my health struggles. Those who have not, I leave them in the dark, only to find out later on their own and then I feel again responsible for their pain.

The funny thing is, the people in my life who i HAVE let in on my health issues have stuck by me thru thick and thin!

I guess ultimately I don't know how to approach the issue, as everytime I tell people about my CF it really comes out of left field and I start crying about it.....someday I'd really like to be able to discuss it calmly without being terrified of THEIR reaction.
 
W

welshwitch

Guest
Hey Michelle,
<br />
<br />I don't really have anything to add but I want to thank you for your insightful remarks re: how to react when people find out something "big" about you. It made me really rethink some of my patterns and why I try to avoid people finding out I have CF.
<br />
<br />I have a tendancy to want to "protect" people I love from finding out my secret. For some reason, I feel like they won't be able to "handle" it or they already have enough on their plate without having to worry about me. But, at the same time, I feel really bad that I try to protect them from this truth. It's like, do I underestimate some of the people in my life from being able to be a support to me? Then, I start feeling like I am playing this weird power game with them, like those who have "earned it" I let them in on my health struggles. Those who have not, I leave them in the dark, only to find out later on their own and then I feel again responsible for their pain.
<br />
<br />The funny thing is, the people in my life who i HAVE let in on my health issues have stuck by me thru thick and thin!
<br />
<br />I guess ultimately I don't know how to approach the issue, as everytime I tell people about my CF it really comes out of left field and I start crying about it.....someday I'd really like to be able to discuss it calmly without being terrified of THEIR reaction.
 
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