cf is merciful

shamrock · Jan 17, 2007

I wasn't going to respond to this post/thread thing, but I think my opinion is slightly different to the ones I have read so I figured I would at my own to pennies.

In my personal opinion, I would much rather have cf then be blind or deaf. I would not change one single thing or experience in my life.

I am firmly of the belief that life is what you make it, quality and not quantity and all that jazz. It may be the case that we won't live to be 40, that we may need to spend weeks on ivs, do hours of treatment of day, pop more pills then sweets etc etc, but that's the cards that we (pwcf) have been dealt. We could sit and wallow at the injustice, or we could do all our stuff and then get on with enjoying life.

To me, I am grateful I can see the sun set, I can see colours and I can hear music.

My reply probably scores an 11 on a 1-10 scale of cheesiness, but nonetheless its mine and I'm sticking to it.

*Sorry if the first page had replies like this, I only read the second! <img src="i/expressions/face-icon-small-smile.gif" border="0">

shamrock · Jan 17, 2007

I wasn't going to respond to this post/thread thing, but I think my opinion is slightly different to the ones I have read so I figured I would at my own to pennies.

In my personal opinion, I would much rather have cf then be blind or deaf. I would not change one single thing or experience in my life.

I am firmly of the belief that life is what you make it, quality and not quantity and all that jazz. It may be the case that we won't live to be 40, that we may need to spend weeks on ivs, do hours of treatment of day, pop more pills then sweets etc etc, but that's the cards that we (pwcf) have been dealt. We could sit and wallow at the injustice, or we could do all our stuff and then get on with enjoying life.

To me, I am grateful I can see the sun set, I can see colours and I can hear music.

My reply probably scores an 11 on a 1-10 scale of cheesiness, but nonetheless its mine and I'm sticking to it.

*Sorry if the first page had replies like this, I only read the second! <img src="i/expressions/face-icon-small-smile.gif" border="0">

shamrock · Jan 17, 2007

I wasn't going to respond to this post/thread thing, but I think my opinion is slightly different to the ones I have read so I figured I would at my own to pennies.

In my personal opinion, I would much rather have cf then be blind or deaf. I would not change one single thing or experience in my life.

I am firmly of the belief that life is what you make it, quality and not quantity and all that jazz. It may be the case that we won't live to be 40, that we may need to spend weeks on ivs, do hours of treatment of day, pop more pills then sweets etc etc, but that's the cards that we (pwcf) have been dealt. We could sit and wallow at the injustice, or we could do all our stuff and then get on with enjoying life.

To me, I am grateful I can see the sun set, I can see colours and I can hear music.

My reply probably scores an 11 on a 1-10 scale of cheesiness, but nonetheless its mine and I'm sticking to it.

*Sorry if the first page had replies like this, I only read the second! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Justsmurfin · Jan 17, 2007

I probably shouldn't get into this as it touches a nerve...

CF wasn't merciful for my friend who suffered most of her life and died at age 13. And no this wasn't a long time ago, this was just 5 years ago. CF still kills young. Most people with CF are still looking at shortened life spans...how shortened varies.

As some one with rather severe vision issues I have been a part of several forums for people with varying vision problems. Most blind people don't see being blind as a big issue. Same with deaf people. Sue Thomas anyone?

My mom is battling breast cancer. I love her and hate seeing her suffer but she's has two surgeries, will do 6 weeks of radiation and take tamoxifen....probably never have a reoccurance or anything. Essentially she will be cured. My dad had a stroke several years ago...it was awful but two years later his life is back to normal and he probably will never have anymore strokes or associated issues.

I would much rather have cancer than CF> Much rather be deaf or blind than have CF. CHildhood leukemia has a survival rate of 90% or so. There are tons of promising treatments for cancer. I don't consider blindness of deafness illnesses or even really disabilities. and as someone with visual issues take offense at that thought

Justsmurfin · Jan 17, 2007

I probably shouldn't get into this as it touches a nerve...

CF wasn't merciful for my friend who suffered most of her life and died at age 13. And no this wasn't a long time ago, this was just 5 years ago. CF still kills young. Most people with CF are still looking at shortened life spans...how shortened varies.

As some one with rather severe vision issues I have been a part of several forums for people with varying vision problems. Most blind people don't see being blind as a big issue. Same with deaf people. Sue Thomas anyone?

My mom is battling breast cancer. I love her and hate seeing her suffer but she's has two surgeries, will do 6 weeks of radiation and take tamoxifen....probably never have a reoccurance or anything. Essentially she will be cured. My dad had a stroke several years ago...it was awful but two years later his life is back to normal and he probably will never have anymore strokes or associated issues.

I would much rather have cancer than CF> Much rather be deaf or blind than have CF. CHildhood leukemia has a survival rate of 90% or so. There are tons of promising treatments for cancer. I don't consider blindness of deafness illnesses or even really disabilities. and as someone with visual issues take offense at that thought

Justsmurfin · Jan 17, 2007

I probably shouldn't get into this as it touches a nerve...

CF wasn't merciful for my friend who suffered most of her life and died at age 13. And no this wasn't a long time ago, this was just 5 years ago. CF still kills young. Most people with CF are still looking at shortened life spans...how shortened varies.

As some one with rather severe vision issues I have been a part of several forums for people with varying vision problems. Most blind people don't see being blind as a big issue. Same with deaf people. Sue Thomas anyone?

My mom is battling breast cancer. I love her and hate seeing her suffer but she's has two surgeries, will do 6 weeks of radiation and take tamoxifen....probably never have a reoccurance or anything. Essentially she will be cured. My dad had a stroke several years ago...it was awful but two years later his life is back to normal and he probably will never have anymore strokes or associated issues.

I would much rather have cancer than CF> Much rather be deaf or blind than have CF. CHildhood leukemia has a survival rate of 90% or so. There are tons of promising treatments for cancer. I don't consider blindness of deafness illnesses or even really disabilities. and as someone with visual issues take offense at that thought

LGMClark1 · Jan 17, 2007

My husband says things like that when I start complaining about my health..I know he's saying it to be positive and make me feel better...he'll say stuff like "Hey, you never know, I can get hit by a bus on my way home..that will be it" or "Hey, you could have the parasitic head of your twin coming out from the top of your head!"
He makes me laugh...no matter what, you could always be worse off...

LGMClark1 · Jan 17, 2007

My husband says things like that when I start complaining about my health..I know he's saying it to be positive and make me feel better...he'll say stuff like "Hey, you never know, I can get hit by a bus on my way home..that will be it" or "Hey, you could have the parasitic head of your twin coming out from the top of your head!"
He makes me laugh...no matter what, you could always be worse off...

LGMClark1 · Jan 17, 2007

My husband says things like that when I start complaining about my health..I know he's saying it to be positive and make me feel better...he'll say stuff like "Hey, you never know, I can get hit by a bus on my way home..that will be it" or "Hey, you could have the parasitic head of your twin coming out from the top of your head!"
He makes me laugh...no matter what, you could always be worse off...

Landy · Jan 17, 2007

Here's what I've considered through out my life--there is always someone out there that has it worse than I do and until I draw my last few breaths, this will continue to be the case.

As I was in Target yesterday, I heard what I thought was a child misbehaving in the front of the store and I could hear this from the back of the store.
As I went to the front of the store to check out, I noticed a young man, I would assume to be around 20ish, in a wheelchair. He clearly did not have control of many bodily functions, including his speech, and I remember feeling sorry for this young man. I also felt compassion for his caretaker. I remember thinking that she was a strong person. I am pretty sure that I could not do her job.

Situations like these and many others make me thankful that although I'm not perfectly made, it could be a whole lot worse.

Landy · Jan 17, 2007

Here's what I've considered through out my life--there is always someone out there that has it worse than I do and until I draw my last few breaths, this will continue to be the case.

As I was in Target yesterday, I heard what I thought was a child misbehaving in the front of the store and I could hear this from the back of the store.
As I went to the front of the store to check out, I noticed a young man, I would assume to be around 20ish, in a wheelchair. He clearly did not have control of many bodily functions, including his speech, and I remember feeling sorry for this young man. I also felt compassion for his caretaker. I remember thinking that she was a strong person. I am pretty sure that I could not do her job.

Situations like these and many others make me thankful that although I'm not perfectly made, it could be a whole lot worse.

Landy · Jan 17, 2007

Here's what I've considered through out my life--there is always someone out there that has it worse than I do and until I draw my last few breaths, this will continue to be the case.

As I was in Target yesterday, I heard what I thought was a child misbehaving in the front of the store and I could hear this from the back of the store.
As I went to the front of the store to check out, I noticed a young man, I would assume to be around 20ish, in a wheelchair. He clearly did not have control of many bodily functions, including his speech, and I remember feeling sorry for this young man. I also felt compassion for his caretaker. I remember thinking that she was a strong person. I am pretty sure that I could not do her job.

Situations like these and many others make me thankful that although I'm not perfectly made, it could be a whole lot worse.

BigBee · Jan 17, 2007

I've typed and erased at least 4 responses all typed at different times over the last few days. Let's see if this one sticks. Here is my two cents worth of rambling.

I've got a different view from most, but not all of you. I'm the one watching the people I love suffer. I used to think CF sucked the worst suck there was. Now I have a friend who has ALS (Lou Gehrig's Disease) and that has far and away taken over on my list as sucking the worst.

With ALS, there is no cure and the lone treatment, Rilutek - has been shown scientifically to prolong the life of persons with ALS by at least a few months. Your entire body becomes paralyzed, (as in you can't even use your finger to change the channel on the remote or hold up your own head), you can't talk, and shortly thereafter you suffocate or choke and die - survival is maybe 5 years from diagnosis if you are really, really lucky.

In my opinion, with ALS there is no hope. Zero. None. It is fatal in a very short time and the 2-5 years you have are, again in my opinion, an extremely poor quality of life. There is no hope for a recovery or a much improved life span with therapies/medications.

I have much hope for those I love with CF. I don't for my friend with ALS. To me, that is a huge difference. Every other disease I have personally seen (even those that have taken the lives of children I know) had hope of some sort. Even if you aren't in the camp that believes in a cure for CF in the near future, the medication therapies, the avg age in Denmark and at the MN center give me hope. Not an unrealistic hope, but a hope nonetheless.

I know the suffering that CF imparts on those who have it and those who love them. Just because someone I love has it worse doesn't change the reality of the depth of devastation that CF eventually imparts.

As Allie so poignantly put it "but that doesn't make CF merciful, any more than losing your legs is merciful because hey, you could have lost your arms too"

BigBee · Jan 17, 2007

I've typed and erased at least 4 responses all typed at different times over the last few days. Let's see if this one sticks. Here is my two cents worth of rambling.

I've got a different view from most, but not all of you. I'm the one watching the people I love suffer. I used to think CF sucked the worst suck there was. Now I have a friend who has ALS (Lou Gehrig's Disease) and that has far and away taken over on my list as sucking the worst.

With ALS, there is no cure and the lone treatment, Rilutek - has been shown scientifically to prolong the life of persons with ALS by at least a few months. Your entire body becomes paralyzed, (as in you can't even use your finger to change the channel on the remote or hold up your own head), you can't talk, and shortly thereafter you suffocate or choke and die - survival is maybe 5 years from diagnosis if you are really, really lucky.

In my opinion, with ALS there is no hope. Zero. None. It is fatal in a very short time and the 2-5 years you have are, again in my opinion, an extremely poor quality of life. There is no hope for a recovery or a much improved life span with therapies/medications.

I have much hope for those I love with CF. I don't for my friend with ALS. To me, that is a huge difference. Every other disease I have personally seen (even those that have taken the lives of children I know) had hope of some sort. Even if you aren't in the camp that believes in a cure for CF in the near future, the medication therapies, the avg age in Denmark and at the MN center give me hope. Not an unrealistic hope, but a hope nonetheless.

I know the suffering that CF imparts on those who have it and those who love them. Just because someone I love has it worse doesn't change the reality of the depth of devastation that CF eventually imparts.

As Allie so poignantly put it "but that doesn't make CF merciful, any more than losing your legs is merciful because hey, you could have lost your arms too"

BigBee · Jan 17, 2007

I've typed and erased at least 4 responses all typed at different times over the last few days. Let's see if this one sticks. Here is my two cents worth of rambling.

I've got a different view from most, but not all of you. I'm the one watching the people I love suffer. I used to think CF sucked the worst suck there was. Now I have a friend who has ALS (Lou Gehrig's Disease) and that has far and away taken over on my list as sucking the worst.

With ALS, there is no cure and the lone treatment, Rilutek - has been shown scientifically to prolong the life of persons with ALS by at least a few months. Your entire body becomes paralyzed, (as in you can't even use your finger to change the channel on the remote or hold up your own head), you can't talk, and shortly thereafter you suffocate or choke and die - survival is maybe 5 years from diagnosis if you are really, really lucky.

In my opinion, with ALS there is no hope. Zero. None. It is fatal in a very short time and the 2-5 years you have are, again in my opinion, an extremely poor quality of life. There is no hope for a recovery or a much improved life span with therapies/medications.

I have much hope for those I love with CF. I don't for my friend with ALS. To me, that is a huge difference. Every other disease I have personally seen (even those that have taken the lives of children I know) had hope of some sort. Even if you aren't in the camp that believes in a cure for CF in the near future, the medication therapies, the avg age in Denmark and at the MN center give me hope. Not an unrealistic hope, but a hope nonetheless.

I know the suffering that CF imparts on those who have it and those who love them. Just because someone I love has it worse doesn't change the reality of the depth of devastation that CF eventually imparts.

As Allie so poignantly put it "but that doesn't make CF merciful, any more than losing your legs is merciful because hey, you could have lost your arms too"

onlyoneloveinmylife · Jan 17, 2007

I agree that there are conditions worse than CF. But being someone with a severe hearing loss(95% gone right ear, 75% gone left ear) it isn't anywhere near as bad as CF. lack of hearing does not hamper your ability to do things, such as running, playing with your kids or nephews and neices, working, making love to your spouse<img src="i/expressions/face-icon-small-wink.gif" border="0"><img src="i/expressions/face-icon-small-happy.gif" border="0"> you don't die from being deaf, you don't hurt either. being nearly deaf isn't fun but i would take that any day over CF.

onlyoneloveinmylife · Jan 17, 2007

I agree that there are conditions worse than CF. But being someone with a severe hearing loss(95% gone right ear, 75% gone left ear) it isn't anywhere near as bad as CF. lack of hearing does not hamper your ability to do things, such as running, playing with your kids or nephews and neices, working, making love to your spouse<img src="i/expressions/face-icon-small-wink.gif" border="0"><img src="i/expressions/face-icon-small-happy.gif" border="0"> you don't die from being deaf, you don't hurt either. being nearly deaf isn't fun but i would take that any day over CF.

onlyoneloveinmylife · Jan 17, 2007

I agree that there are conditions worse than CF. But being someone with a severe hearing loss(95% gone right ear, 75% gone left ear) it isn't anywhere near as bad as CF. lack of hearing does not hamper your ability to do things, such as running, playing with your kids or nephews and neices, working, making love to your spouse<img src="i/expressions/face-icon-small-wink.gif" border="0"><img src="i/expressions/face-icon-small-happy.gif" border="0"> you don't die from being deaf, you don't hurt either. being nearly deaf isn't fun but i would take that any day over CF.

65rosessamurai · Jan 17, 2007

Since the exchange rate is so high, my two yen won't be worth anything!

But, I can see there are many viewpoints to which is worse than which, either of which are the worst of two (or more) evils!

As for how a person's meaning is expressed in writing, it's only as good as how the writer expresses it.

And, this post looks so nostalgic of WinAce's kind of topics.

65rosessamurai · Jan 17, 2007

Since the exchange rate is so high, my two yen won't be worth anything!

But, I can see there are many viewpoints to which is worse than which, either of which are the worst of two (or more) evils!

As for how a person's meaning is expressed in writing, it's only as good as how the writer expresses it.

And, this post looks so nostalgic of WinAce's kind of topics.

cf is merciful

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