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Making the transition to CF Activism/being an Advocate

W

welshwitch

Guest
Hi all!

just wanted to check w. folks to see who has gone beyond just the "dealing with CF" piece to actually "being an activist" for CF. What do I mean by this? Fundraisers, spreading CF awareness, bike rides, etc. I know lots of parents with CF children do this, but what about CFers themselves?

Those who are advocates, I ask you this:

*How does being an advocate make you feel good?
*Have you ever gotten any kind of negative reaction from friends/family (ie from fundraising or events)
*Do you feel like being an activist makes you feel more in control of your CF?
*Is it something you recommend?
*What types of issues do you deal with when you reach out to the CF community when it comes to other CFers (cross infection?)
*Any other tips/words of wisdom?

I think in the next couple years since I've gotten a handle on accepting that I actually HAVE CF, I would like to give back to the community, organize a marathon, or something to that nature to raise $$ for CF.....
 
W

welshwitch

Guest
Hi all!

just wanted to check w. folks to see who has gone beyond just the "dealing with CF" piece to actually "being an activist" for CF. What do I mean by this? Fundraisers, spreading CF awareness, bike rides, etc. I know lots of parents with CF children do this, but what about CFers themselves?

Those who are advocates, I ask you this:

*How does being an advocate make you feel good?
*Have you ever gotten any kind of negative reaction from friends/family (ie from fundraising or events)
*Do you feel like being an activist makes you feel more in control of your CF?
*Is it something you recommend?
*What types of issues do you deal with when you reach out to the CF community when it comes to other CFers (cross infection?)
*Any other tips/words of wisdom?

I think in the next couple years since I've gotten a handle on accepting that I actually HAVE CF, I would like to give back to the community, organize a marathon, or something to that nature to raise $$ for CF.....
 
W

welshwitch

Guest
Hi all!

just wanted to check w. folks to see who has gone beyond just the "dealing with CF" piece to actually "being an activist" for CF. What do I mean by this? Fundraisers, spreading CF awareness, bike rides, etc. I know lots of parents with CF children do this, but what about CFers themselves?

Those who are advocates, I ask you this:

*How does being an advocate make you feel good?
*Have you ever gotten any kind of negative reaction from friends/family (ie from fundraising or events)
*Do you feel like being an activist makes you feel more in control of your CF?
*Is it something you recommend?
*What types of issues do you deal with when you reach out to the CF community when it comes to other CFers (cross infection?)
*Any other tips/words of wisdom?

I think in the next couple years since I've gotten a handle on accepting that I actually HAVE CF, I would like to give back to the community, organize a marathon, or something to that nature to raise $$ for CF.....
 
W

welshwitch

Guest
Hi all!

just wanted to check w. folks to see who has gone beyond just the "dealing with CF" piece to actually "being an activist" for CF. What do I mean by this? Fundraisers, spreading CF awareness, bike rides, etc. I know lots of parents with CF children do this, but what about CFers themselves?

Those who are advocates, I ask you this:

*How does being an advocate make you feel good?
*Have you ever gotten any kind of negative reaction from friends/family (ie from fundraising or events)
*Do you feel like being an activist makes you feel more in control of your CF?
*Is it something you recommend?
*What types of issues do you deal with when you reach out to the CF community when it comes to other CFers (cross infection?)
*Any other tips/words of wisdom?

I think in the next couple years since I've gotten a handle on accepting that I actually HAVE CF, I would like to give back to the community, organize a marathon, or something to that nature to raise $$ for CF.....
 
W

welshwitch

Guest
Hi all!
<br />
<br />just wanted to check w. folks to see who has gone beyond just the "dealing with CF" piece to actually "being an activist" for CF. What do I mean by this? Fundraisers, spreading CF awareness, bike rides, etc. I know lots of parents with CF children do this, but what about CFers themselves?
<br />
<br />Those who are advocates, I ask you this:
<br />
<br />*How does being an advocate make you feel good?
<br />*Have you ever gotten any kind of negative reaction from friends/family (ie from fundraising or events)
<br />*Do you feel like being an activist makes you feel more in control of your CF?
<br />*Is it something you recommend?
<br />*What types of issues do you deal with when you reach out to the CF community when it comes to other CFers (cross infection?)
<br />*Any other tips/words of wisdom?
<br />
<br />I think in the next couple years since I've gotten a handle on accepting that I actually HAVE CF, I would like to give back to the community, organize a marathon, or something to that nature to raise $$ for CF.....
 
G

GriffinsMama

New member
Wow, That's so great that you're considering this. I haven't been able to do any fundraising yet and I want to. I missed Great Strides this year because we were in the middle of renovations on the place we rent. I've been considering doing a raffle with donated goods and local services. I know quite a few artists etc who I think would donate. I thought about doing it at a local pizza/pasta hotspot. I'm a caregiver to my son, I don't actually have cf myself
 
G

GriffinsMama

New member
Wow, That's so great that you're considering this. I haven't been able to do any fundraising yet and I want to. I missed Great Strides this year because we were in the middle of renovations on the place we rent. I've been considering doing a raffle with donated goods and local services. I know quite a few artists etc who I think would donate. I thought about doing it at a local pizza/pasta hotspot. I'm a caregiver to my son, I don't actually have cf myself
 
G

GriffinsMama

New member
Wow, That's so great that you're considering this. I haven't been able to do any fundraising yet and I want to. I missed Great Strides this year because we were in the middle of renovations on the place we rent. I've been considering doing a raffle with donated goods and local services. I know quite a few artists etc who I think would donate. I thought about doing it at a local pizza/pasta hotspot. I'm a caregiver to my son, I don't actually have cf myself
 
G

GriffinsMama

New member
Wow, That's so great that you're considering this. I haven't been able to do any fundraising yet and I want to. I missed Great Strides this year because we were in the middle of renovations on the place we rent. I've been considering doing a raffle with donated goods and local services. I know quite a few artists etc who I think would donate. I thought about doing it at a local pizza/pasta hotspot. I'm a caregiver to my son, I don't actually have cf myself
 
G

GriffinsMama

New member
Wow, That's so great that you're considering this. I haven't been able to do any fundraising yet and I want to. I missed Great Strides this year because we were in the middle of renovations on the place we rent. I've been considering doing a raffle with donated goods and local services. I know quite a few artists etc who I think would donate. I thought about doing it at a local pizza/pasta hotspot. I'm a caregiver to my son, I don't actually have cf myself
 
M

MicheleGazelle

New member
I run a website where I try to share what has worked for my son and I. Generally speaking, I believe strongly in "light one candle rather than curse the dark" and in bottom-up solutions rather than top-down solutions -- in this case, grass-roots movements of folks coping with CF first-hand and finding alternative medicine, diet and lifestyle solutions instead of waiting for some researcher to discover The Cure. That's part of why I participate in online forums like this one and in email lists.
<b>
*How does being an advocate make you feel good?</b>
I periodically hear from people who have found my website and tell me it has helped them improve their health. These contacts make it easier for me to put up with often getting hostility from folks for various reasons.

<b>*Have you ever gotten any kind of negative reaction from friends/family (ie from fundraising or events)</b>
I am close to my sons who are very supportive but not too close to other family members. Friends are in short supply at the moment. Most of them come from email lists right now or I have friends who have no idea I have CF. So for me, this is a non-issue. My mother probably thinks I'm a loon for putting so much time and energy into my websites...etc... I don't really care. I doubt I could ever make my mother "approve" of me. It no longer matters.<shrug>

<b>*Do you feel like being an activist makes you feel more in control of your CF?</b>
Not exactly. It does give me perspective on how well my son and I are doing. I have suffered a lot, in part because I was diagnosed so late and in part because I come from a dysfunctional family, and of late I am often fed up with the crap in my life. Participating in the online CF community and reaching out to others makes me aware of how healthy I am given my diagnosis and how healthy my son. That part makes it easier to not go completely postal when I'm having a bad day.

<b>*Is it something you recommend?</b>
I've done volunteer work since I was 16 and I've read plenty of stuff on the psychological benefits of doing good. So, yes, I do recommend it. Depression is fueled by a sense of helplessness. Feeling like there is something you can DO about it is generally a good way to combat anger, depression, frustration, etc when faced with such a serious problem.


<b>*What types of issues do you deal with when you reach out to the CF community when it comes to other CFers (cross infection?)</b>
I promote lifestyle and dietary changes as a primary defense against illness.

<b>*Any other tips/words of wisdom? </b>
Know when to take a break from it. Your Cause isn't going to bend over backwards to make you happy. So don't expect it to. When things get tough, set it aside for a bit -- an hour, a day, a week -- and take a mental and emotional break from it so you don't wind up feeling burdened by it and resentful. If you don't keep it in perspective, it's easy to wind up bitter, frustrated and so on. Been there, done that. Got the t-shirt.
 
M

MicheleGazelle

New member
I run a website where I try to share what has worked for my son and I. Generally speaking, I believe strongly in "light one candle rather than curse the dark" and in bottom-up solutions rather than top-down solutions -- in this case, grass-roots movements of folks coping with CF first-hand and finding alternative medicine, diet and lifestyle solutions instead of waiting for some researcher to discover The Cure. That's part of why I participate in online forums like this one and in email lists.
<b>
*How does being an advocate make you feel good?</b>
I periodically hear from people who have found my website and tell me it has helped them improve their health. These contacts make it easier for me to put up with often getting hostility from folks for various reasons.

<b>*Have you ever gotten any kind of negative reaction from friends/family (ie from fundraising or events)</b>
I am close to my sons who are very supportive but not too close to other family members. Friends are in short supply at the moment. Most of them come from email lists right now or I have friends who have no idea I have CF. So for me, this is a non-issue. My mother probably thinks I'm a loon for putting so much time and energy into my websites...etc... I don't really care. I doubt I could ever make my mother "approve" of me. It no longer matters.<shrug>

<b>*Do you feel like being an activist makes you feel more in control of your CF?</b>
Not exactly. It does give me perspective on how well my son and I are doing. I have suffered a lot, in part because I was diagnosed so late and in part because I come from a dysfunctional family, and of late I am often fed up with the crap in my life. Participating in the online CF community and reaching out to others makes me aware of how healthy I am given my diagnosis and how healthy my son. That part makes it easier to not go completely postal when I'm having a bad day.

<b>*Is it something you recommend?</b>
I've done volunteer work since I was 16 and I've read plenty of stuff on the psychological benefits of doing good. So, yes, I do recommend it. Depression is fueled by a sense of helplessness. Feeling like there is something you can DO about it is generally a good way to combat anger, depression, frustration, etc when faced with such a serious problem.


<b>*What types of issues do you deal with when you reach out to the CF community when it comes to other CFers (cross infection?)</b>
I promote lifestyle and dietary changes as a primary defense against illness.

<b>*Any other tips/words of wisdom? </b>
Know when to take a break from it. Your Cause isn't going to bend over backwards to make you happy. So don't expect it to. When things get tough, set it aside for a bit -- an hour, a day, a week -- and take a mental and emotional break from it so you don't wind up feeling burdened by it and resentful. If you don't keep it in perspective, it's easy to wind up bitter, frustrated and so on. Been there, done that. Got the t-shirt.
 
M

MicheleGazelle

New member
I run a website where I try to share what has worked for my son and I. Generally speaking, I believe strongly in "light one candle rather than curse the dark" and in bottom-up solutions rather than top-down solutions -- in this case, grass-roots movements of folks coping with CF first-hand and finding alternative medicine, diet and lifestyle solutions instead of waiting for some researcher to discover The Cure. That's part of why I participate in online forums like this one and in email lists.
<b>
*How does being an advocate make you feel good?</b>
I periodically hear from people who have found my website and tell me it has helped them improve their health. These contacts make it easier for me to put up with often getting hostility from folks for various reasons.

<b>*Have you ever gotten any kind of negative reaction from friends/family (ie from fundraising or events)</b>
I am close to my sons who are very supportive but not too close to other family members. Friends are in short supply at the moment. Most of them come from email lists right now or I have friends who have no idea I have CF. So for me, this is a non-issue. My mother probably thinks I'm a loon for putting so much time and energy into my websites...etc... I don't really care. I doubt I could ever make my mother "approve" of me. It no longer matters.<shrug>

<b>*Do you feel like being an activist makes you feel more in control of your CF?</b>
Not exactly. It does give me perspective on how well my son and I are doing. I have suffered a lot, in part because I was diagnosed so late and in part because I come from a dysfunctional family, and of late I am often fed up with the crap in my life. Participating in the online CF community and reaching out to others makes me aware of how healthy I am given my diagnosis and how healthy my son. That part makes it easier to not go completely postal when I'm having a bad day.

<b>*Is it something you recommend?</b>
I've done volunteer work since I was 16 and I've read plenty of stuff on the psychological benefits of doing good. So, yes, I do recommend it. Depression is fueled by a sense of helplessness. Feeling like there is something you can DO about it is generally a good way to combat anger, depression, frustration, etc when faced with such a serious problem.


<b>*What types of issues do you deal with when you reach out to the CF community when it comes to other CFers (cross infection?)</b>
I promote lifestyle and dietary changes as a primary defense against illness.

<b>*Any other tips/words of wisdom? </b>
Know when to take a break from it. Your Cause isn't going to bend over backwards to make you happy. So don't expect it to. When things get tough, set it aside for a bit -- an hour, a day, a week -- and take a mental and emotional break from it so you don't wind up feeling burdened by it and resentful. If you don't keep it in perspective, it's easy to wind up bitter, frustrated and so on. Been there, done that. Got the t-shirt.
 
M

MicheleGazelle

New member
I run a website where I try to share what has worked for my son and I. Generally speaking, I believe strongly in "light one candle rather than curse the dark" and in bottom-up solutions rather than top-down solutions -- in this case, grass-roots movements of folks coping with CF first-hand and finding alternative medicine, diet and lifestyle solutions instead of waiting for some researcher to discover The Cure. That's part of why I participate in online forums like this one and in email lists.
<b>
*How does being an advocate make you feel good?</b>
I periodically hear from people who have found my website and tell me it has helped them improve their health. These contacts make it easier for me to put up with often getting hostility from folks for various reasons.

<b>*Have you ever gotten any kind of negative reaction from friends/family (ie from fundraising or events)</b>
I am close to my sons who are very supportive but not too close to other family members. Friends are in short supply at the moment. Most of them come from email lists right now or I have friends who have no idea I have CF. So for me, this is a non-issue. My mother probably thinks I'm a loon for putting so much time and energy into my websites...etc... I don't really care. I doubt I could ever make my mother "approve" of me. It no longer matters.<shrug>

<b>*Do you feel like being an activist makes you feel more in control of your CF?</b>
Not exactly. It does give me perspective on how well my son and I are doing. I have suffered a lot, in part because I was diagnosed so late and in part because I come from a dysfunctional family, and of late I am often fed up with the crap in my life. Participating in the online CF community and reaching out to others makes me aware of how healthy I am given my diagnosis and how healthy my son. That part makes it easier to not go completely postal when I'm having a bad day.

<b>*Is it something you recommend?</b>
I've done volunteer work since I was 16 and I've read plenty of stuff on the psychological benefits of doing good. So, yes, I do recommend it. Depression is fueled by a sense of helplessness. Feeling like there is something you can DO about it is generally a good way to combat anger, depression, frustration, etc when faced with such a serious problem.


<b>*What types of issues do you deal with when you reach out to the CF community when it comes to other CFers (cross infection?)</b>
I promote lifestyle and dietary changes as a primary defense against illness.

<b>*Any other tips/words of wisdom? </b>
Know when to take a break from it. Your Cause isn't going to bend over backwards to make you happy. So don't expect it to. When things get tough, set it aside for a bit -- an hour, a day, a week -- and take a mental and emotional break from it so you don't wind up feeling burdened by it and resentful. If you don't keep it in perspective, it's easy to wind up bitter, frustrated and so on. Been there, done that. Got the t-shirt.
 
M

MicheleGazelle

New member
I run a website where I try to share what has worked for my son and I. Generally speaking, I believe strongly in "light one candle rather than curse the dark" and in bottom-up solutions rather than top-down solutions -- in this case, grass-roots movements of folks coping with CF first-hand and finding alternative medicine, diet and lifestyle solutions instead of waiting for some researcher to discover The Cure. That's part of why I participate in online forums like this one and in email lists.
<br /><b>
<br />*How does being an advocate make you feel good?</b>
<br />I periodically hear from people who have found my website and tell me it has helped them improve their health. These contacts make it easier for me to put up with often getting hostility from folks for various reasons.
<br />
<br /><b>*Have you ever gotten any kind of negative reaction from friends/family (ie from fundraising or events)</b>
<br />I am close to my sons who are very supportive but not too close to other family members. Friends are in short supply at the moment. Most of them come from email lists right now or I have friends who have no idea I have CF. So for me, this is a non-issue. My mother probably thinks I'm a loon for putting so much time and energy into my websites...etc... I don't really care. I doubt I could ever make my mother "approve" of me. It no longer matters.<shrug>
<br />
<br /><b>*Do you feel like being an activist makes you feel more in control of your CF?</b>
<br />Not exactly. It does give me perspective on how well my son and I are doing. I have suffered a lot, in part because I was diagnosed so late and in part because I come from a dysfunctional family, and of late I am often fed up with the crap in my life. Participating in the online CF community and reaching out to others makes me aware of how healthy I am given my diagnosis and how healthy my son. That part makes it easier to not go completely postal when I'm having a bad day.
<br />
<br /><b>*Is it something you recommend?</b>
<br />I've done volunteer work since I was 16 and I've read plenty of stuff on the psychological benefits of doing good. So, yes, I do recommend it. Depression is fueled by a sense of helplessness. Feeling like there is something you can DO about it is generally a good way to combat anger, depression, frustration, etc when faced with such a serious problem.
<br />
<br />
<br /><b>*What types of issues do you deal with when you reach out to the CF community when it comes to other CFers (cross infection?)</b>
<br />I promote lifestyle and dietary changes as a primary defense against illness.
<br />
<br /><b>*Any other tips/words of wisdom? </b>
<br />Know when to take a break from it. Your Cause isn't going to bend over backwards to make you happy. So don't expect it to. When things get tough, set it aside for a bit -- an hour, a day, a week -- and take a mental and emotional break from it so you don't wind up feeling burdened by it and resentful. If you don't keep it in perspective, it's easy to wind up bitter, frustrated and so on. Been there, done that. Got the t-shirt.
 
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