Introducing someone to CF

Solo · Aug 8, 2008

I personally told everyone I directly work with about me having CF, and even though they know, they will never truly understand. They might say they understand it, but you never truly know what one goes through until you have walked in their shoes. For instance, I am trying to go mostly dairy-free, but I cheated last night and had a cheese pizza. Well needless to say, I literally paid the price for my deviating from my self-imposed diet; I had severe stomach pains and threw up about every 2 hours. (It was probably a combination of that and catching a stomach bug, cause someone at my work was sick)I could not get up; I was accurately placed in the fetal position all day long and could not catch even a minute of sleep last night. Hence, I am dosing myself with Tylenol with Coedine, and it seems to be working fine. Now I called off today, but this is an anomaly for me as I almost never call out. I'm certain that if anyone at my job experienced the same pain sensations that I had they would have gone to the ER in a heartbeat. It boggles my mind how people complain of a little headache or muscle ache or call off due to them stubbing their toe when in reality pain has a leading role in my life.

Solo · Aug 8, 2008

I personally told everyone I directly work with about me having CF, and even though they know, they will never truly understand. They might say they understand it, but you never truly know what one goes through until you have walked in their shoes. For instance, I am trying to go mostly dairy-free, but I cheated last night and had a cheese pizza. Well needless to say, I literally paid the price for my deviating from my self-imposed diet; I had severe stomach pains and threw up about every 2 hours. (It was probably a combination of that and catching a stomach bug, cause someone at my work was sick)I could not get up; I was accurately placed in the fetal position all day long and could not catch even a minute of sleep last night. Hence, I am dosing myself with Tylenol with Coedine, and it seems to be working fine. Now I called off today, but this is an anomaly for me as I almost never call out. I'm certain that if anyone at my job experienced the same pain sensations that I had they would have gone to the ER in a heartbeat. It boggles my mind how people complain of a little headache or muscle ache or call off due to them stubbing their toe when in reality pain has a leading role in my life.

Solo · Aug 8, 2008

I personally told everyone I directly work with about me having CF, and even though they know, they will never truly understand. They might say they understand it, but you never truly know what one goes through until you have walked in their shoes. For instance, I am trying to go mostly dairy-free, but I cheated last night and had a cheese pizza. Well needless to say, I literally paid the price for my deviating from my self-imposed diet; I had severe stomach pains and threw up about every 2 hours. (It was probably a combination of that and catching a stomach bug, cause someone at my work was sick)I could not get up; I was accurately placed in the fetal position all day long and could not catch even a minute of sleep last night. Hence, I am dosing myself with Tylenol with Coedine, and it seems to be working fine. Now I called off today, but this is an anomaly for me as I almost never call out. I'm certain that if anyone at my job experienced the same pain sensations that I had they would have gone to the ER in a heartbeat. It boggles my mind how people complain of a little headache or muscle ache or call off due to them stubbing their toe when in reality pain has a leading role in my life.

Solo · Aug 8, 2008

I personally told everyone I directly work with about me having CF, and even though they know, they will never truly understand. They might say they understand it, but you never truly know what one goes through until you have walked in their shoes. For instance, I am trying to go mostly dairy-free, but I cheated last night and had a cheese pizza. Well needless to say, I literally paid the price for my deviating from my self-imposed diet; I had severe stomach pains and threw up about every 2 hours. (It was probably a combination of that and catching a stomach bug, cause someone at my work was sick)I could not get up; I was accurately placed in the fetal position all day long and could not catch even a minute of sleep last night. Hence, I am dosing myself with Tylenol with Coedine, and it seems to be working fine. Now I called off today, but this is an anomaly for me as I almost never call out. I'm certain that if anyone at my job experienced the same pain sensations that I had they would have gone to the ER in a heartbeat. It boggles my mind how people complain of a little headache or muscle ache or call off due to them stubbing their toe when in reality pain has a leading role in my life.

Solo · Aug 8, 2008

I personally told everyone I directly work with about me having CF, and even though they know, they will never truly understand. They might say they understand it, but you never truly know what one goes through until you have walked in their shoes. For instance, I am trying to go mostly dairy-free, but I cheated last night and had a cheese pizza. Well needless to say, I literally paid the price for my deviating from my self-imposed diet; I had severe stomach pains and threw up about every 2 hours. (It was probably a combination of that and catching a stomach bug, cause someone at my work was sick)I could not get up; I was accurately placed in the fetal position all day long and could not catch even a minute of sleep last night. Hence, I am dosing myself with Tylenol with Coedine, and it seems to be working fine. Now I called off today, but this is an anomaly for me as I almost never call out. I'm certain that if anyone at my job experienced the same pain sensations that I had they would have gone to the ER in a heartbeat. It boggles my mind how people complain of a little headache or muscle ache or call off due to them stubbing their toe when in reality pain has a leading role in my life.

MicheleGazelle · Aug 9, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: Isabella
but i want him to have all the information i have. i think it's totally unfair to glaze over what i know of this disease and the possibilities of the worst case scenarios, because........well i just think he should know.

</end quote></div>

I'm not one to gloss over or sugar coat anything. In fact, I fairly often get myself in hot water for being too blunt. But I also know this:
A) Everyone dies. "Death and taxes" and all that. It isn't unique to CF.
B) There are lots of examples of people living healthier, longer lives with CF than is expected. Through online forums, I am acquainted with people in their 70's with CF. I am also acquainted with people who have made lifestyle changes and such and gotten off drugs, reversed antibiotic resistence in infections, etc. So far, I haven't seen you include any of that. If you aren't going to include stuff like that, then a collage of dead people doesn't really tell the truth about CF. It only tells a half-truth and half-truths are a very hard type of lie to argue against.

Yes, you could die at a very young age because you have CF. However, focusing on that as a likely outcome while glossing over the many people who have worked extremely hard to achieve a better outcome makes it even more likely that it will turn out exactly as you predict. For that reason, I think it's a bad idea. For your own mental health (and future physical health -- optimists tend to fair better in the face of adversity), I hope you will consider either ditching the collage of dead people or finding some positive information to balance it with.

Just a longer explanation of my earlier remark.

Good luck, whatever you decide to do.

MicheleGazelle · Aug 9, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: Isabella
but i want him to have all the information i have. i think it's totally unfair to glaze over what i know of this disease and the possibilities of the worst case scenarios, because........well i just think he should know.

</end quote></div>

I'm not one to gloss over or sugar coat anything. In fact, I fairly often get myself in hot water for being too blunt. But I also know this:
A) Everyone dies. "Death and taxes" and all that. It isn't unique to CF.
B) There are lots of examples of people living healthier, longer lives with CF than is expected. Through online forums, I am acquainted with people in their 70's with CF. I am also acquainted with people who have made lifestyle changes and such and gotten off drugs, reversed antibiotic resistence in infections, etc. So far, I haven't seen you include any of that. If you aren't going to include stuff like that, then a collage of dead people doesn't really tell the truth about CF. It only tells a half-truth and half-truths are a very hard type of lie to argue against.

Yes, you could die at a very young age because you have CF. However, focusing on that as a likely outcome while glossing over the many people who have worked extremely hard to achieve a better outcome makes it even more likely that it will turn out exactly as you predict. For that reason, I think it's a bad idea. For your own mental health (and future physical health -- optimists tend to fair better in the face of adversity), I hope you will consider either ditching the collage of dead people or finding some positive information to balance it with.

Just a longer explanation of my earlier remark.

Good luck, whatever you decide to do.

MicheleGazelle · Aug 9, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: Isabella
but i want him to have all the information i have. i think it's totally unfair to glaze over what i know of this disease and the possibilities of the worst case scenarios, because........well i just think he should know.

</end quote></div>

I'm not one to gloss over or sugar coat anything. In fact, I fairly often get myself in hot water for being too blunt. But I also know this:
A) Everyone dies. "Death and taxes" and all that. It isn't unique to CF.
B) There are lots of examples of people living healthier, longer lives with CF than is expected. Through online forums, I am acquainted with people in their 70's with CF. I am also acquainted with people who have made lifestyle changes and such and gotten off drugs, reversed antibiotic resistence in infections, etc. So far, I haven't seen you include any of that. If you aren't going to include stuff like that, then a collage of dead people doesn't really tell the truth about CF. It only tells a half-truth and half-truths are a very hard type of lie to argue against.

Yes, you could die at a very young age because you have CF. However, focusing on that as a likely outcome while glossing over the many people who have worked extremely hard to achieve a better outcome makes it even more likely that it will turn out exactly as you predict. For that reason, I think it's a bad idea. For your own mental health (and future physical health -- optimists tend to fair better in the face of adversity), I hope you will consider either ditching the collage of dead people or finding some positive information to balance it with.

Just a longer explanation of my earlier remark.

Good luck, whatever you decide to do.

MicheleGazelle · Aug 9, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: Isabella
but i want him to have all the information i have. i think it's totally unfair to glaze over what i know of this disease and the possibilities of the worst case scenarios, because........well i just think he should know.

</end quote>

I'm not one to gloss over or sugar coat anything. In fact, I fairly often get myself in hot water for being too blunt. But I also know this:
A) Everyone dies. "Death and taxes" and all that. It isn't unique to CF.
B) There are lots of examples of people living healthier, longer lives with CF than is expected. Through online forums, I am acquainted with people in their 70's with CF. I am also acquainted with people who have made lifestyle changes and such and gotten off drugs, reversed antibiotic resistence in infections, etc. So far, I haven't seen you include any of that. If you aren't going to include stuff like that, then a collage of dead people doesn't really tell the truth about CF. It only tells a half-truth and half-truths are a very hard type of lie to argue against.

Yes, you could die at a very young age because you have CF. However, focusing on that as a likely outcome while glossing over the many people who have worked extremely hard to achieve a better outcome makes it even more likely that it will turn out exactly as you predict. For that reason, I think it's a bad idea. For your own mental health (and future physical health -- optimists tend to fair better in the face of adversity), I hope you will consider either ditching the collage of dead people or finding some positive information to balance it with.

Just a longer explanation of my earlier remark.

Good luck, whatever you decide to do.

MicheleGazelle · Aug 9, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: Isabella
 but i want him to have all the information i have. i think it's totally unfair to glaze over what i know of this disease and the possibilities of the worst case scenarios, because........well i just think he should know.
 
 </end quote>
 
 I'm not one to gloss over or sugar coat anything. In fact, I fairly often get myself in hot water for being too blunt. But I also know this:
 A) Everyone dies. "Death and taxes" and all that. It isn't unique to CF.
 B) There are lots of examples of people living healthier, longer lives with CF than is expected. Through online forums, I am acquainted with people in their 70's with CF. I am also acquainted with people who have made lifestyle changes and such and gotten off drugs, reversed antibiotic resistence in infections, etc. So far, I haven't seen you include any of that. If you aren't going to include stuff like that, then a collage of dead people doesn't really tell the truth about CF. It only tells a half-truth and half-truths are a very hard type of lie to argue against.
 
 Yes, you could die at a very young age because you have CF. However, focusing on that as a likely outcome while glossing over the many people who have worked extremely hard to achieve a better outcome makes it even more likely that it will turn out exactly as you predict. For that reason, I think it's a bad idea. For your own mental health (and future physical health -- optimists tend to fair better in the face of adversity), I hope you will consider either ditching the collage of dead people or finding some positive information to balance it with.
 
 Just a longer explanation of my earlier remark.
 
 Good luck, whatever you decide to do.

SeeEff · Aug 9, 2008

"i want to include frankie abernathy (because i have self destructive tendencies), but that will be difficult since that season of the real world is not on dvd."

sorry but just to respond to that part. As a person with CF I was totally and completely offended by that girl & her behavior on that show. what a whiny, selfish little troll.
she didn't even have symptoms til she was - what? 15 years old?
I've had symptoms & meds & treatments since birth! get over it!
then she drinks & smokes? *&#% that!

sorry, I don't mean to offend anyone - but anytime someone mentions that girl & try to use her as an example of CF - ticks me off HUGE!

you sound like a great gal & I wish you the best of luck with your happy future <img src="i/expressions/face-icon-small-smile.gif" border="0">

SeeEff · Aug 9, 2008

"i want to include frankie abernathy (because i have self destructive tendencies), but that will be difficult since that season of the real world is not on dvd."

sorry but just to respond to that part. As a person with CF I was totally and completely offended by that girl & her behavior on that show. what a whiny, selfish little troll.
she didn't even have symptoms til she was - what? 15 years old?
I've had symptoms & meds & treatments since birth! get over it!
then she drinks & smokes? *&#% that!

sorry, I don't mean to offend anyone - but anytime someone mentions that girl & try to use her as an example of CF - ticks me off HUGE!

you sound like a great gal & I wish you the best of luck with your happy future <img src="i/expressions/face-icon-small-smile.gif" border="0">

SeeEff · Aug 9, 2008

"i want to include frankie abernathy (because i have self destructive tendencies), but that will be difficult since that season of the real world is not on dvd."

sorry but just to respond to that part. As a person with CF I was totally and completely offended by that girl & her behavior on that show. what a whiny, selfish little troll.
she didn't even have symptoms til she was - what? 15 years old?
I've had symptoms & meds & treatments since birth! get over it!
then she drinks & smokes? *&#% that!

sorry, I don't mean to offend anyone - but anytime someone mentions that girl & try to use her as an example of CF - ticks me off HUGE!

you sound like a great gal & I wish you the best of luck with your happy future <img src="i/expressions/face-icon-small-smile.gif" border="0">

SeeEff · Aug 9, 2008

"i want to include frankie abernathy (because i have self destructive tendencies), but that will be difficult since that season of the real world is not on dvd."

sorry but just to respond to that part. As a person with CF I was totally and completely offended by that girl & her behavior on that show. what a whiny, selfish little troll.
she didn't even have symptoms til she was - what? 15 years old?
I've had symptoms & meds & treatments since birth! get over it!
then she drinks & smokes? *&#% that!

sorry, I don't mean to offend anyone - but anytime someone mentions that girl & try to use her as an example of CF - ticks me off HUGE!

you sound like a great gal & I wish you the best of luck with your happy future <img src="i/expressions/face-icon-small-smile.gif" border="0">

SeeEff · Aug 9, 2008

"i want to include frankie abernathy (because i have self destructive tendencies), but that will be difficult since that season of the real world is not on dvd."
 
 sorry but just to respond to that part. As a person with CF I was totally and completely offended by that girl & her behavior on that show. what a whiny, selfish little troll.
 she didn't even have symptoms til she was - what? 15 years old?
 I've had symptoms & meds & treatments since birth! get over it!
 then she drinks & smokes? *&#% that!
 
 sorry, I don't mean to offend anyone - but anytime someone mentions that girl & try to use her as an example of CF - ticks me off HUGE!
 
 you sound like a great gal & I wish you the best of luck with your happy future <img src="i/expressions/face-icon-small-smile.gif" border="0">

Diane · Aug 10, 2008