A little help?

[Martha]

Hi everyone!

After having worked for a research project about the lives of CF patients, I am pursuing CF as the topic for my undergraduate senior thesis. I've decided to turn to this forum as a way of hearing about CF from the people that know it best (that's you!). Though I have done quite a bit of reading about CF, I still have a few questions that I hope some of you with CF, with family or friends with CF... really anyone that knows more than I do, could help me out with.

Please know that all of your responses will be treated with the greatest respect and all of your comments will remain anonymous. Feel free to PM me if you'd prefer your messages to be more private. I am so eager to learn more about CF and I am confident that any information you provide for me will be extremely helpful.

So...

I'm interested most in how CF impacts the sense of self, specifically in terms of living with CF into adulthood. Consider the following:

1. I have noticed talk about adults with CF as being an exception, or that some people are living longer than they are "supposed to" with CF. Have you made life decisions based on the assumption of a shorter life expectancy?

If so, how do you feel about those decisions? Regretful? Happy? Disappointed? Optimistic?

2. How central a role does CF play in your identity now?

How has the role of CF as part of your identity changed over the course of your life?

Feel free to let me know anything else about CF that wasn't asked about in these questions (and I'm sure there's tons to tell). My research is focused mostly on issues faced by adults living with CF, but I'd appreciate any feedback. Thank you so much!

Martha

 

[Martha]

Hi everyone!

After having worked for a research project about the lives of CF patients, I am pursuing CF as the topic for my undergraduate senior thesis. I've decided to turn to this forum as a way of hearing about CF from the people that know it best (that's you!). Though I have done quite a bit of reading about CF, I still have a few questions that I hope some of you with CF, with family or friends with CF... really anyone that knows more than I do, could help me out with.

Please know that all of your responses will be treated with the greatest respect and all of your comments will remain anonymous. Feel free to PM me if you'd prefer your messages to be more private. I am so eager to learn more about CF and I am confident that any information you provide for me will be extremely helpful.

So...

I'm interested most in how CF impacts the sense of self, specifically in terms of living with CF into adulthood. Consider the following:

1. I have noticed talk about adults with CF as being an exception, or that some people are living longer than they are "supposed to" with CF. Have you made life decisions based on the assumption of a shorter life expectancy?

If so, how do you feel about those decisions? Regretful? Happy? Disappointed? Optimistic?

2. How central a role does CF play in your identity now?

How has the role of CF as part of your identity changed over the course of your life?

Feel free to let me know anything else about CF that wasn't asked about in these questions (and I'm sure there's tons to tell). My research is focused mostly on issues faced by adults living with CF, but I'd appreciate any feedback. Thank you so much!

Martha

 

[Martha]

Hi everyone!

After having worked for a research project about the lives of CF patients, I am pursuing CF as the topic for my undergraduate senior thesis. I've decided to turn to this forum as a way of hearing about CF from the people that know it best (that's you!). Though I have done quite a bit of reading about CF, I still have a few questions that I hope some of you with CF, with family or friends with CF... really anyone that knows more than I do, could help me out with.

Please know that all of your responses will be treated with the greatest respect and all of your comments will remain anonymous. Feel free to PM me if you'd prefer your messages to be more private. I am so eager to learn more about CF and I am confident that any information you provide for me will be extremely helpful.

So...

I'm interested most in how CF impacts the sense of self, specifically in terms of living with CF into adulthood. Consider the following:

1. I have noticed talk about adults with CF as being an exception, or that some people are living longer than they are "supposed to" with CF. Have you made life decisions based on the assumption of a shorter life expectancy?

If so, how do you feel about those decisions? Regretful? Happy? Disappointed? Optimistic?

2. How central a role does CF play in your identity now?

How has the role of CF as part of your identity changed over the course of your life?

Feel free to let me know anything else about CF that wasn't asked about in these questions (and I'm sure there's tons to tell). My research is focused mostly on issues faced by adults living with CF, but I'd appreciate any feedback. Thank you so much!

Martha

 

[Martha]

Hi everyone!

After having worked for a research project about the lives of CF patients, I am pursuing CF as the topic for my undergraduate senior thesis. I've decided to turn to this forum as a way of hearing about CF from the people that know it best (that's you!). Though I have done quite a bit of reading about CF, I still have a few questions that I hope some of you with CF, with family or friends with CF... really anyone that knows more than I do, could help me out with.

Please know that all of your responses will be treated with the greatest respect and all of your comments will remain anonymous. Feel free to PM me if you'd prefer your messages to be more private. I am so eager to learn more about CF and I am confident that any information you provide for me will be extremely helpful.

So...

I'm interested most in how CF impacts the sense of self, specifically in terms of living with CF into adulthood. Consider the following:

1. I have noticed talk about adults with CF as being an exception, or that some people are living longer than they are "supposed to" with CF. Have you made life decisions based on the assumption of a shorter life expectancy?

If so, how do you feel about those decisions? Regretful? Happy? Disappointed? Optimistic?

2. How central a role does CF play in your identity now?

How has the role of CF as part of your identity changed over the course of your life?

Feel free to let me know anything else about CF that wasn't asked about in these questions (and I'm sure there's tons to tell). My research is focused mostly on issues faced by adults living with CF, but I'd appreciate any feedback. Thank you so much!

Martha

 

[Martha]

Hi everyone!

After having worked for a research project about the lives of CF patients, I am pursuing CF as the topic for my undergraduate senior thesis. I've decided to turn to this forum as a way of hearing about CF from the people that know it best (that's you!). Though I have done quite a bit of reading about CF, I still have a few questions that I hope some of you with CF, with family or friends with CF... really anyone that knows more than I do, could help me out with.

Please know that all of your responses will be treated with the greatest respect and all of your comments will remain anonymous. Feel free to PM me if you'd prefer your messages to be more private. I am so eager to learn more about CF and I am confident that any information you provide for me will be extremely helpful.

So...

I'm interested most in how CF impacts the sense of self, specifically in terms of living with CF into adulthood. Consider the following:

1. I have noticed talk about adults with CF as being an exception, or that some people are living longer than they are "supposed to" with CF. Have you made life decisions based on the assumption of a shorter life expectancy?

If so, how do you feel about those decisions? Regretful? Happy? Disappointed? Optimistic?

2. How central a role does CF play in your identity now?

How has the role of CF as part of your identity changed over the course of your life?

Feel free to let me know anything else about CF that wasn't asked about in these questions (and I'm sure there's tons to tell). My research is focused mostly on issues faced by adults living with CF, but I'd appreciate any feedback. Thank you so much!

Martha

 

[lightNlife]

Here are my responses, as well as links to my blogs and other sources of info:

1. I have noticed talk about adults with CF as being an exception, or that some people are living longer than they are "supposed to" with CF. Have you made life decisions based on the assumption of a shorter life expectancy?

<i>I was never told I was limited. I've always been a goal-oriented person, and I've set out to do many things. There were times when I grew discouraged that I might not find a spouse "in time" to experience a nice life before CF claimed me as its victim, but that fear was assuaged. I've had to learn to be flexible with my plans in the interest of self-preservation. There are times when I'm frustrated that I had to make so many difficult decisions at a young age. For example, none of my non-CF peers has an advance directive or even knows what a DNR is.

The link below is a video clip of me and my husband, discussing life with CF.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfvoice.com/info/caregivers/lifestyle/sickness_health.jsp
">http://www.cfvoice.com/info/ca...e/sickness_health.jsp
</a>
For the most part, I'm content with the decisions we've made. The decision not to be parents is a bit of a sore spot still, but we're learning to move forward in that part of our lives as well. I'm confident and optimistic that any decisions made with CF in mind will be done with careful consideration to the overall quality of life. I know my husband and extended family would never push me to do something that I don't want. For example, no one is going to lay any guilt trips on us for our decision to forgo transplantation. It's the right thing for us, and that's how we face our future together. </i>

If so, how do you feel about those decisions? Regretful? Happy? Disappointed? Optimistic?

2. How central a role does CF play in your identity now?
<i> One of the things I strive for is to let people know who I am before they know what I have (i.e. CF). I want them to get to know that talkative, creative redhead and her talented husband before we let them know that I have CF. My personality, my "spirit" is who I am. CF is just something I have--like thick hair or that crazy freckle on the bottom of my foot. As Lindsay Wadleigh once put it "CF has shaped my goals. When you're young, the world is your canvas; CF shows you which colors and medium to use." </i>

How has the role of CF as part of your identity changed over the course of your life?

<i> due to its progressive nature, CF has taken an increasingly more prominent role in my life. The harder CF gets to fight, the harder my family and I work at maintaining a sense of "normal." My husband and I have learned to adjust our priorities based on my current health status. Again, I do not consider CF my identity. I'm a lot more than just a bundle of proteins and carbon chains. </i>

Feel free to let me know anything else about CF that wasn't asked about in these questions (and I'm sure there's tons to tell). My research is focused mostly on issues faced by adults living with CF, but I'd appreciate any feedback. Thank you so much!

 

[lightNlife]

Here are my responses, as well as links to my blogs and other sources of info:

1. I have noticed talk about adults with CF as being an exception, or that some people are living longer than they are "supposed to" with CF. Have you made life decisions based on the assumption of a shorter life expectancy?

<i>I was never told I was limited. I've always been a goal-oriented person, and I've set out to do many things. There were times when I grew discouraged that I might not find a spouse "in time" to experience a nice life before CF claimed me as its victim, but that fear was assuaged. I've had to learn to be flexible with my plans in the interest of self-preservation. There are times when I'm frustrated that I had to make so many difficult decisions at a young age. For example, none of my non-CF peers has an advance directive or even knows what a DNR is.

The link below is a video clip of me and my husband, discussing life with CF.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfvoice.com/info/caregivers/lifestyle/sickness_health.jsp
">http://www.cfvoice.com/info/ca...e/sickness_health.jsp
</a>
For the most part, I'm content with the decisions we've made. The decision not to be parents is a bit of a sore spot still, but we're learning to move forward in that part of our lives as well. I'm confident and optimistic that any decisions made with CF in mind will be done with careful consideration to the overall quality of life. I know my husband and extended family would never push me to do something that I don't want. For example, no one is going to lay any guilt trips on us for our decision to forgo transplantation. It's the right thing for us, and that's how we face our future together. </i>

If so, how do you feel about those decisions? Regretful? Happy? Disappointed? Optimistic?

2. How central a role does CF play in your identity now?
<i> One of the things I strive for is to let people know who I am before they know what I have (i.e. CF). I want them to get to know that talkative, creative redhead and her talented husband before we let them know that I have CF. My personality, my "spirit" is who I am. CF is just something I have--like thick hair or that crazy freckle on the bottom of my foot. As Lindsay Wadleigh once put it "CF has shaped my goals. When you're young, the world is your canvas; CF shows you which colors and medium to use." </i>

How has the role of CF as part of your identity changed over the course of your life?

<i> due to its progressive nature, CF has taken an increasingly more prominent role in my life. The harder CF gets to fight, the harder my family and I work at maintaining a sense of "normal." My husband and I have learned to adjust our priorities based on my current health status. Again, I do not consider CF my identity. I'm a lot more than just a bundle of proteins and carbon chains. </i>

Feel free to let me know anything else about CF that wasn't asked about in these questions (and I'm sure there's tons to tell). My research is focused mostly on issues faced by adults living with CF, but I'd appreciate any feedback. Thank you so much!

 

[lightNlife]

Here are my responses, as well as links to my blogs and other sources of info:

1. I have noticed talk about adults with CF as being an exception, or that some people are living longer than they are "supposed to" with CF. Have you made life decisions based on the assumption of a shorter life expectancy?

<i>I was never told I was limited. I've always been a goal-oriented person, and I've set out to do many things. There were times when I grew discouraged that I might not find a spouse "in time" to experience a nice life before CF claimed me as its victim, but that fear was assuaged. I've had to learn to be flexible with my plans in the interest of self-preservation. There are times when I'm frustrated that I had to make so many difficult decisions at a young age. For example, none of my non-CF peers has an advance directive or even knows what a DNR is.

The link below is a video clip of me and my husband, discussing life with CF.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfvoice.com/info/caregivers/lifestyle/sickness_health.jsp
">http://www.cfvoice.com/info/ca...e/sickness_health.jsp
</a>
For the most part, I'm content with the decisions we've made. The decision not to be parents is a bit of a sore spot still, but we're learning to move forward in that part of our lives as well. I'm confident and optimistic that any decisions made with CF in mind will be done with careful consideration to the overall quality of life. I know my husband and extended family would never push me to do something that I don't want. For example, no one is going to lay any guilt trips on us for our decision to forgo transplantation. It's the right thing for us, and that's how we face our future together. </i>

If so, how do you feel about those decisions? Regretful? Happy? Disappointed? Optimistic?

2. How central a role does CF play in your identity now?
<i> One of the things I strive for is to let people know who I am before they know what I have (i.e. CF). I want them to get to know that talkative, creative redhead and her talented husband before we let them know that I have CF. My personality, my "spirit" is who I am. CF is just something I have--like thick hair or that crazy freckle on the bottom of my foot. As Lindsay Wadleigh once put it "CF has shaped my goals. When you're young, the world is your canvas; CF shows you which colors and medium to use." </i>

How has the role of CF as part of your identity changed over the course of your life?

<i> due to its progressive nature, CF has taken an increasingly more prominent role in my life. The harder CF gets to fight, the harder my family and I work at maintaining a sense of "normal." My husband and I have learned to adjust our priorities based on my current health status. Again, I do not consider CF my identity. I'm a lot more than just a bundle of proteins and carbon chains. </i>

Feel free to let me know anything else about CF that wasn't asked about in these questions (and I'm sure there's tons to tell). My research is focused mostly on issues faced by adults living with CF, but I'd appreciate any feedback. Thank you so much!

 

[lightNlife]

Here are my responses, as well as links to my blogs and other sources of info:

1. I have noticed talk about adults with CF as being an exception, or that some people are living longer than they are "supposed to" with CF. Have you made life decisions based on the assumption of a shorter life expectancy?

<i>I was never told I was limited. I've always been a goal-oriented person, and I've set out to do many things. There were times when I grew discouraged that I might not find a spouse "in time" to experience a nice life before CF claimed me as its victim, but that fear was assuaged. I've had to learn to be flexible with my plans in the interest of self-preservation. There are times when I'm frustrated that I had to make so many difficult decisions at a young age. For example, none of my non-CF peers has an advance directive or even knows what a DNR is.

The link below is a video clip of me and my husband, discussing life with CF.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfvoice.com/info/caregivers/lifestyle/sickness_health.jsp
">http://www.cfvoice.com/info/ca...e/sickness_health.jsp
</a>
For the most part, I'm content with the decisions we've made. The decision not to be parents is a bit of a sore spot still, but we're learning to move forward in that part of our lives as well. I'm confident and optimistic that any decisions made with CF in mind will be done with careful consideration to the overall quality of life. I know my husband and extended family would never push me to do something that I don't want. For example, no one is going to lay any guilt trips on us for our decision to forgo transplantation. It's the right thing for us, and that's how we face our future together. </i>

If so, how do you feel about those decisions? Regretful? Happy? Disappointed? Optimistic?

2. How central a role does CF play in your identity now?
<i> One of the things I strive for is to let people know who I am before they know what I have (i.e. CF). I want them to get to know that talkative, creative redhead and her talented husband before we let them know that I have CF. My personality, my "spirit" is who I am. CF is just something I have--like thick hair or that crazy freckle on the bottom of my foot. As Lindsay Wadleigh once put it "CF has shaped my goals. When you're young, the world is your canvas; CF shows you which colors and medium to use." </i>

How has the role of CF as part of your identity changed over the course of your life?

<i> due to its progressive nature, CF has taken an increasingly more prominent role in my life. The harder CF gets to fight, the harder my family and I work at maintaining a sense of "normal." My husband and I have learned to adjust our priorities based on my current health status. Again, I do not consider CF my identity. I'm a lot more than just a bundle of proteins and carbon chains. </i>

Feel free to let me know anything else about CF that wasn't asked about in these questions (and I'm sure there's tons to tell). My research is focused mostly on issues faced by adults living with CF, but I'd appreciate any feedback. Thank you so much!

 

[lightNlife]

Here are my responses, as well as links to my blogs and other sources of info:

1. I have noticed talk about adults with CF as being an exception, or that some people are living longer than they are "supposed to" with CF. Have you made life decisions based on the assumption of a shorter life expectancy?

<i>I was never told I was limited. I've always been a goal-oriented person, and I've set out to do many things. There were times when I grew discouraged that I might not find a spouse "in time" to experience a nice life before CF claimed me as its victim, but that fear was assuaged. I've had to learn to be flexible with my plans in the interest of self-preservation. There are times when I'm frustrated that I had to make so many difficult decisions at a young age. For example, none of my non-CF peers has an advance directive or even knows what a DNR is.

The link below is a video clip of me and my husband, discussing life with CF.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfvoice.com/info/caregivers/lifestyle/sickness_health.jsp
">http://www.cfvoice.com/info/ca...e/sickness_health.jsp
</a>
For the most part, I'm content with the decisions we've made. The decision not to be parents is a bit of a sore spot still, but we're learning to move forward in that part of our lives as well. I'm confident and optimistic that any decisions made with CF in mind will be done with careful consideration to the overall quality of life. I know my husband and extended family would never push me to do something that I don't want. For example, no one is going to lay any guilt trips on us for our decision to forgo transplantation. It's the right thing for us, and that's how we face our future together. </i>

If so, how do you feel about those decisions? Regretful? Happy? Disappointed? Optimistic?

2. How central a role does CF play in your identity now?
<i> One of the things I strive for is to let people know who I am before they know what I have (i.e. CF). I want them to get to know that talkative, creative redhead and her talented husband before we let them know that I have CF. My personality, my "spirit" is who I am. CF is just something I have--like thick hair or that crazy freckle on the bottom of my foot. As Lindsay Wadleigh once put it "CF has shaped my goals. When you're young, the world is your canvas; CF shows you which colors and medium to use." </i>

How has the role of CF as part of your identity changed over the course of your life?

<i> due to its progressive nature, CF has taken an increasingly more prominent role in my life. The harder CF gets to fight, the harder my family and I work at maintaining a sense of "normal." My husband and I have learned to adjust our priorities based on my current health status. Again, I do not consider CF my identity. I'm a lot more than just a bundle of proteins and carbon chains. </i>

Feel free to let me know anything else about CF that wasn't asked about in these questions (and I'm sure there's tons to tell). My research is focused mostly on issues faced by adults living with CF, but I'd appreciate any feedback. Thank you so much!

 

[kswitch]

maybe it's just me, but i would feel better about fielding questions to someone preparing a senior thesis (that's you!) if i knew more about you, your work, your intention, your organization, your angle, etc.

i know that many on this site are of the mindset to educate any and all about cf whenever possible. so, for them, i respond:

<div class="FTQUOTE"><begin quote>
1. I have noticed talk about adults with CF as being an exception, or that some people are living longer than they are "supposed to" with CF. Have you made life decisions based on the assumption of a shorter life expectancy?
</end quote></div>

well, being that we have been told time and time again that cure was right around the corner, you'd think we'd have learned pretty early not to put much credence to what "they" say. never-the-less, people with cf who are adults now didn't have the prognosis that kids today have.

the timestamp tends to leave an impression on the minds of the godless cystics. i dropped out of high school because i failed to see the value if i was to have no future; i turned to street drugs as they were more accessible than the prescription drugs i needed so desperately; i even tried a quicker suicide, to no avail. death has plans of its own, so here i sit, twenty-nine years after my curse, still waiting for it.

<div class="FTQUOTE"><begin quote>
If so, how do you feel about those decisions? Regretful? Happy? Disappointed? Optimistic?
</end quote></div>

let's see... i'm a dropout, a felon, a student, and poor. would i make any changes? not a one; i rather like me, cf and all.

<div class="FTQUOTE"><begin quote>
2. How central a role does CF play in your identity now?
</end quote></div>

unless you have an unstated, specific, academic definition of identity, this question, to me, is a bit redundant. being as cf has been a lifelong illness, it inseparable from my identity. no amount of drugs, illicit or otherwise, has been able to change that. maybe the late diagnoses can recall an identity without cf, but i cannot.

<div class="FTQUOTE"><begin quote>
How has the role of CF as part of your identity changed over the course of your life?
</end quote></div>

my attitude towards cf has matured parallel to progression of the disease. go figure.

k-

 

[kswitch]

maybe it's just me, but i would feel better about fielding questions to someone preparing a senior thesis (that's you!) if i knew more about you, your work, your intention, your organization, your angle, etc.

i know that many on this site are of the mindset to educate any and all about cf whenever possible. so, for them, i respond:

<div class="FTQUOTE"><begin quote>
1. I have noticed talk about adults with CF as being an exception, or that some people are living longer than they are "supposed to" with CF. Have you made life decisions based on the assumption of a shorter life expectancy?
</end quote></div>

well, being that we have been told time and time again that cure was right around the corner, you'd think we'd have learned pretty early not to put much credence to what "they" say. never-the-less, people with cf who are adults now didn't have the prognosis that kids today have.

the timestamp tends to leave an impression on the minds of the godless cystics. i dropped out of high school because i failed to see the value if i was to have no future; i turned to street drugs as they were more accessible than the prescription drugs i needed so desperately; i even tried a quicker suicide, to no avail. death has plans of its own, so here i sit, twenty-nine years after my curse, still waiting for it.

<div class="FTQUOTE"><begin quote>
If so, how do you feel about those decisions? Regretful? Happy? Disappointed? Optimistic?
</end quote></div>

let's see... i'm a dropout, a felon, a student, and poor. would i make any changes? not a one; i rather like me, cf and all.

<div class="FTQUOTE"><begin quote>
2. How central a role does CF play in your identity now?
</end quote></div>

unless you have an unstated, specific, academic definition of identity, this question, to me, is a bit redundant. being as cf has been a lifelong illness, it inseparable from my identity. no amount of drugs, illicit or otherwise, has been able to change that. maybe the late diagnoses can recall an identity without cf, but i cannot.

<div class="FTQUOTE"><begin quote>
How has the role of CF as part of your identity changed over the course of your life?
</end quote></div>

my attitude towards cf has matured parallel to progression of the disease. go figure.

k-

 

[kswitch]

maybe it's just me, but i would feel better about fielding questions to someone preparing a senior thesis (that's you!) if i knew more about you, your work, your intention, your organization, your angle, etc.

i know that many on this site are of the mindset to educate any and all about cf whenever possible. so, for them, i respond:

<div class="FTQUOTE"><begin quote>
1. I have noticed talk about adults with CF as being an exception, or that some people are living longer than they are "supposed to" with CF. Have you made life decisions based on the assumption of a shorter life expectancy?
</end quote></div>

well, being that we have been told time and time again that cure was right around the corner, you'd think we'd have learned pretty early not to put much credence to what "they" say. never-the-less, people with cf who are adults now didn't have the prognosis that kids today have.

the timestamp tends to leave an impression on the minds of the godless cystics. i dropped out of high school because i failed to see the value if i was to have no future; i turned to street drugs as they were more accessible than the prescription drugs i needed so desperately; i even tried a quicker suicide, to no avail. death has plans of its own, so here i sit, twenty-nine years after my curse, still waiting for it.

<div class="FTQUOTE"><begin quote>
If so, how do you feel about those decisions? Regretful? Happy? Disappointed? Optimistic?
</end quote></div>

let's see... i'm a dropout, a felon, a student, and poor. would i make any changes? not a one; i rather like me, cf and all.

<div class="FTQUOTE"><begin quote>
2. How central a role does CF play in your identity now?
</end quote></div>

unless you have an unstated, specific, academic definition of identity, this question, to me, is a bit redundant. being as cf has been a lifelong illness, it inseparable from my identity. no amount of drugs, illicit or otherwise, has been able to change that. maybe the late diagnoses can recall an identity without cf, but i cannot.

<div class="FTQUOTE"><begin quote>
How has the role of CF as part of your identity changed over the course of your life?
</end quote></div>

my attitude towards cf has matured parallel to progression of the disease. go figure.

k-

 

[kswitch]

maybe it's just me, but i would feel better about fielding questions to someone preparing a senior thesis (that's you!) if i knew more about you, your work, your intention, your organization, your angle, etc.

i know that many on this site are of the mindset to educate any and all about cf whenever possible. so, for them, i respond:

<div class="FTQUOTE"><begin quote>
1. I have noticed talk about adults with CF as being an exception, or that some people are living longer than they are "supposed to" with CF. Have you made life decisions based on the assumption of a shorter life expectancy?
</end quote>

well, being that we have been told time and time again that cure was right around the corner, you'd think we'd have learned pretty early not to put much credence to what "they" say. never-the-less, people with cf who are adults now didn't have the prognosis that kids today have.

the timestamp tends to leave an impression on the minds of the godless cystics. i dropped out of high school because i failed to see the value if i was to have no future; i turned to street drugs as they were more accessible than the prescription drugs i needed so desperately; i even tried a quicker suicide, to no avail. death has plans of its own, so here i sit, twenty-nine years after my curse, still waiting for it.

<div class="FTQUOTE"><begin quote>
If so, how do you feel about those decisions? Regretful? Happy? Disappointed? Optimistic?
</end quote>

let's see... i'm a dropout, a felon, a student, and poor. would i make any changes? not a one; i rather like me, cf and all.

<div class="FTQUOTE"><begin quote>
2. How central a role does CF play in your identity now?
</end quote>

unless you have an unstated, specific, academic definition of identity, this question, to me, is a bit redundant. being as cf has been a lifelong illness, it inseparable from my identity. no amount of drugs, illicit or otherwise, has been able to change that. maybe the late diagnoses can recall an identity without cf, but i cannot.

<div class="FTQUOTE"><begin quote>
How has the role of CF as part of your identity changed over the course of your life?
</end quote>

my attitude towards cf has matured parallel to progression of the disease. go figure.

k-

 

[kswitch]

maybe it's just me, but i would feel better about fielding questions to someone preparing a senior thesis (that's you!) if i knew more about you, your work, your intention, your organization, your angle, etc.

i know that many on this site are of the mindset to educate any and all about cf whenever possible. so, for them, i respond:

<div class="FTQUOTE"><begin quote>
1. I have noticed talk about adults with CF as being an exception, or that some people are living longer than they are "supposed to" with CF. Have you made life decisions based on the assumption of a shorter life expectancy?
</end quote>

well, being that we have been told time and time again that cure was right around the corner, you'd think we'd have learned pretty early not to put much credence to what "they" say. never-the-less, people with cf who are adults now didn't have the prognosis that kids today have.

the timestamp tends to leave an impression on the minds of the godless cystics. i dropped out of high school because i failed to see the value if i was to have no future; i turned to street drugs as they were more accessible than the prescription drugs i needed so desperately; i even tried a quicker suicide, to no avail. death has plans of its own, so here i sit, twenty-nine years after my curse, still waiting for it.

<div class="FTQUOTE"><begin quote>
If so, how do you feel about those decisions? Regretful? Happy? Disappointed? Optimistic?
</end quote>

let's see... i'm a dropout, a felon, a student, and poor. would i make any changes? not a one; i rather like me, cf and all.

<div class="FTQUOTE"><begin quote>
2. How central a role does CF play in your identity now?
</end quote>

unless you have an unstated, specific, academic definition of identity, this question, to me, is a bit redundant. being as cf has been a lifelong illness, it inseparable from my identity. no amount of drugs, illicit or otherwise, has been able to change that. maybe the late diagnoses can recall an identity without cf, but i cannot.

<div class="FTQUOTE"><begin quote>
How has the role of CF as part of your identity changed over the course of your life?
</end quote>

my attitude towards cf has matured parallel to progression of the disease. go figure.

k-

 

[bittyhorse23]

I'm sending you a PM <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[bittyhorse23]

I'm sending you a PM <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[bittyhorse23]

I'm sending you a PM <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[bittyhorse23]

I'm sending you a PM <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[bittyhorse23]

I'm sending you a PM <img src="i/expressions/face-icon-small-smile.gif" border="0">