cf is merciful

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JustDucky

New member
Cory, thank you for sharing a bit of your life. I certainly know what you mean. As I have posted earlier, I have muscular dystrophy (a rare kind that presents in life in the 3rd, 4th or 5th decade, usually not too life altering unless it is the kind that affects the diaphragm, which did happen to me) and CF....If people like odds, that is about a 1 in a million shot to have both (my doc says that, I am having trouble finding odds on the type of dystrophy alone, literally about 4 papers published on the disease!!! It doesn't even have a real name, just a diiscription of distal myopathy with early respiratory failure). You sound like a very strong person who has been through alot in life as well and have a good attitude. Just keep plugging along, it is good to see you here. I like what you have to say regarding comparing disabilities, I also happen to agree that everyone who has them has their own set of problems to deal with (all in my previous posts). It's like trying to compare end stage heart disease to a brain tumor, both very serious diseases but very different to the people who live with them. Different treatments, different tests, different meds, and perhaps different life expectancies. The thing that might unite them is a fighting spirit or just the opposite might be the case. It sounds like your friend and you are meant for each other, both fighters.
Hope I am not sounding sappy here, just what my heart is telling me to write!
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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Scarlett81

New member
Usually when a person says the odds of a person getting hit by a bus....yadda yadda vs the cf thing.....they are saying that they don't live their life waiting for the day they die.

And I'm sorry-but too many cfers do live like that. From what I see personally, too many cfers think about it on a continuous daily basis like they have something to prove by bringing it up. I don't mean to offend anyone by saying that, its just my personal opinion. But to me, thats not living.

These are all personal choices of how you will chose to live. Will you chose to sit around in a circle discussing your impending cf death? I won't.
 
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Scarlett81

New member
Usually when a person says the odds of a person getting hit by a bus....yadda yadda vs the cf thing.....they are saying that they don't live their life waiting for the day they die.

And I'm sorry-but too many cfers do live like that. From what I see personally, too many cfers think about it on a continuous daily basis like they have something to prove by bringing it up. I don't mean to offend anyone by saying that, its just my personal opinion. But to me, thats not living.

These are all personal choices of how you will chose to live. Will you chose to sit around in a circle discussing your impending cf death? I won't.
 
S

Scarlett81

New member
Usually when a person says the odds of a person getting hit by a bus....yadda yadda vs the cf thing.....they are saying that they don't live their life waiting for the day they die.

And I'm sorry-but too many cfers do live like that. From what I see personally, too many cfers think about it on a continuous daily basis like they have something to prove by bringing it up. I don't mean to offend anyone by saying that, its just my personal opinion. But to me, thats not living.

These are all personal choices of how you will chose to live. Will you chose to sit around in a circle discussing your impending cf death? I won't.
 
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Scarlett81

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JazzysMom</b></i>

ON Rami's behalf......maybe his words were not the best choice. Given his thoughts at the time of this post, maybe its what he felt. ON another thread he also agrees with someone who doesnt want to live. I know Rami pretty well and believe he posts what his heart & emotions are saying right at that moment. Maybe something happened to get this thought provoked for him. Dont crucify him even if many of us have seen the worst side of CF including death. He isnt having a walk thru the park with his CF. He is struggling to stay alive like us, but without most of the meds & proper care that we get. REMEMBER WRITTEN WORDS DONT ALWAYS EXPRESS WHAT OUR TRUE THOUGHTS/MEANINGS ARE!</end quote></div>

Well said Mel. Rami has been dealt a hand just as tough as anyone else with this disease-but its worse b/c he has had to live with hunger and war and need.

Its all in how you look at it. Thats all. And his outlook is different than someone elses, and vice versa.
 
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Scarlett81

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JazzysMom</b></i>

ON Rami's behalf......maybe his words were not the best choice. Given his thoughts at the time of this post, maybe its what he felt. ON another thread he also agrees with someone who doesnt want to live. I know Rami pretty well and believe he posts what his heart & emotions are saying right at that moment. Maybe something happened to get this thought provoked for him. Dont crucify him even if many of us have seen the worst side of CF including death. He isnt having a walk thru the park with his CF. He is struggling to stay alive like us, but without most of the meds & proper care that we get. REMEMBER WRITTEN WORDS DONT ALWAYS EXPRESS WHAT OUR TRUE THOUGHTS/MEANINGS ARE!</end quote></div>

Well said Mel. Rami has been dealt a hand just as tough as anyone else with this disease-but its worse b/c he has had to live with hunger and war and need.

Its all in how you look at it. Thats all. And his outlook is different than someone elses, and vice versa.
 
S

Scarlett81

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JazzysMom</b></i>

ON Rami's behalf......maybe his words were not the best choice. Given his thoughts at the time of this post, maybe its what he felt. ON another thread he also agrees with someone who doesnt want to live. I know Rami pretty well and believe he posts what his heart & emotions are saying right at that moment. Maybe something happened to get this thought provoked for him. Dont crucify him even if many of us have seen the worst side of CF including death. He isnt having a walk thru the park with his CF. He is struggling to stay alive like us, but without most of the meds & proper care that we get. REMEMBER WRITTEN WORDS DONT ALWAYS EXPRESS WHAT OUR TRUE THOUGHTS/MEANINGS ARE!</end quote></div>

Well said Mel. Rami has been dealt a hand just as tough as anyone else with this disease-but its worse b/c he has had to live with hunger and war and need.

Its all in how you look at it. Thats all. And his outlook is different than someone elses, and vice versa.
 
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Emily65Roses

New member
I think about my death in a very specific way. "Well, I'm going to die before I should, so I better not d*ck around."

In other words, I get the sh*t I wanna do done as soon as possible instead of putting it off for the sake of being lazy or whatever. And I don't think there's anything wrong with that. In fact, I think it makes for good prioritizing.
 
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Emily65Roses

New member
I think about my death in a very specific way. "Well, I'm going to die before I should, so I better not d*ck around."

In other words, I get the sh*t I wanna do done as soon as possible instead of putting it off for the sake of being lazy or whatever. And I don't think there's anything wrong with that. In fact, I think it makes for good prioritizing.
 
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Emily65Roses

New member
I think about my death in a very specific way. "Well, I'm going to die before I should, so I better not d*ck around."

In other words, I get the sh*t I wanna do done as soon as possible instead of putting it off for the sake of being lazy or whatever. And I don't think there's anything wrong with that. In fact, I think it makes for good prioritizing.
 
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Lilith

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Scarlett81</b></i>

From what I see personally, too many cfers think about it on a continuous daily basis like they have something to prove by bringing it up. I don't mean to offend anyone by saying that, its just my personal opinion. But to me, thats not living.

These are all personal choices of how you will chose to live. Will you chose to sit around in a circle discussing your impending cf death? I won't.</end quote></div><br>

</br>I will. I'll discuss it, I'll get my frustration out rather than bottle it up and be blindsided in the end...much like a bus. I don't choose to ignore the inevitable. I embrace it and I prepare for it. I turn it into morbid humor. I don't turn and run from it, pretending it will never happen, like many I've seen on this board would rather do. And I think its insulting when the people who do face the truth and choose to discuss it are called "negative" and "suicidal". I have nothing to prove by talking about death. I'm not trying to look brave and courageous. I'm thinking ahead and preparing myself, simple as that, while still enjoying my life, my art, my family and my husband. Happy as the day is long, with death still as a topic of discussion at some points. Yep, its possible! It just boggles my mind that the topic of death, something that happens every day and is a part of freakin' life, is still treated like a taboo around here. Just thought I'd speak out on that point as one of the so-called "negatives" on this forum.<br>

</br>As for Rami's point, I disagree. I side with the fact that CF will knock you flat on your rear and keep coming back for more till the bitter end. Blindness and deafness don't. But my opinon on that has already been stated by many others. I won't repeat the same lecture.
 
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Lilith

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Scarlett81</b></i>

From what I see personally, too many cfers think about it on a continuous daily basis like they have something to prove by bringing it up. I don't mean to offend anyone by saying that, its just my personal opinion. But to me, thats not living.

These are all personal choices of how you will chose to live. Will you chose to sit around in a circle discussing your impending cf death? I won't.</end quote></div><br>

</br>I will. I'll discuss it, I'll get my frustration out rather than bottle it up and be blindsided in the end...much like a bus. I don't choose to ignore the inevitable. I embrace it and I prepare for it. I turn it into morbid humor. I don't turn and run from it, pretending it will never happen, like many I've seen on this board would rather do. And I think its insulting when the people who do face the truth and choose to discuss it are called "negative" and "suicidal". I have nothing to prove by talking about death. I'm not trying to look brave and courageous. I'm thinking ahead and preparing myself, simple as that, while still enjoying my life, my art, my family and my husband. Happy as the day is long, with death still as a topic of discussion at some points. Yep, its possible! It just boggles my mind that the topic of death, something that happens every day and is a part of freakin' life, is still treated like a taboo around here. Just thought I'd speak out on that point as one of the so-called "negatives" on this forum.<br>

</br>As for Rami's point, I disagree. I side with the fact that CF will knock you flat on your rear and keep coming back for more till the bitter end. Blindness and deafness don't. But my opinon on that has already been stated by many others. I won't repeat the same lecture.
 
L

Lilith

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Scarlett81</b></i>

From what I see personally, too many cfers think about it on a continuous daily basis like they have something to prove by bringing it up. I don't mean to offend anyone by saying that, its just my personal opinion. But to me, thats not living.

These are all personal choices of how you will chose to live. Will you chose to sit around in a circle discussing your impending cf death? I won't.</end quote></div><br>

</br>I will. I'll discuss it, I'll get my frustration out rather than bottle it up and be blindsided in the end...much like a bus. I don't choose to ignore the inevitable. I embrace it and I prepare for it. I turn it into morbid humor. I don't turn and run from it, pretending it will never happen, like many I've seen on this board would rather do. And I think its insulting when the people who do face the truth and choose to discuss it are called "negative" and "suicidal". I have nothing to prove by talking about death. I'm not trying to look brave and courageous. I'm thinking ahead and preparing myself, simple as that, while still enjoying my life, my art, my family and my husband. Happy as the day is long, with death still as a topic of discussion at some points. Yep, its possible! It just boggles my mind that the topic of death, something that happens every day and is a part of freakin' life, is still treated like a taboo around here. Just thought I'd speak out on that point as one of the so-called "negatives" on this forum.<br>

</br>As for Rami's point, I disagree. I side with the fact that CF will knock you flat on your rear and keep coming back for more till the bitter end. Blindness and deafness don't. But my opinon on that has already been stated by many others. I won't repeat the same lecture.
 
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Emily65Roses

New member
Hear hear, Lisa!!!

I think much more courageous than turning your back on facts and pretending truth isn't there... is embracing it, talking about it when need be, cracking jokes at its expense. And while you may choose either path you like, those of us that choose the latter are not negative or suicidal or whatever the hell else. *shrug*
 
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Emily65Roses

New member
Hear hear, Lisa!!!

I think much more courageous than turning your back on facts and pretending truth isn't there... is embracing it, talking about it when need be, cracking jokes at its expense. And while you may choose either path you like, those of us that choose the latter are not negative or suicidal or whatever the hell else. *shrug*
 
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Emily65Roses

New member
Hear hear, Lisa!!!

I think much more courageous than turning your back on facts and pretending truth isn't there... is embracing it, talking about it when need be, cracking jokes at its expense. And while you may choose either path you like, those of us that choose the latter are not negative or suicidal or whatever the hell else. *shrug*
 
A

Allie

New member
I'm going to make a really stupid comparison. To me, it's like the people who won't say Voldemort in Harry Potter. They are letting him have a huge measure of control by the very fear of his name. So it is with death. If you can talk about it, joke about it, etc....what power does it have? The fear dissipates.

Ry used to always say "If you can joke about something, it doesn't have any power. "

And it's kind of like Melissa's sig "The truth does not change based on your ability to stomach it" Or something close to that.

*shrug* My 2 shekels
 
A

Allie

New member
I'm going to make a really stupid comparison. To me, it's like the people who won't say Voldemort in Harry Potter. They are letting him have a huge measure of control by the very fear of his name. So it is with death. If you can talk about it, joke about it, etc....what power does it have? The fear dissipates.

Ry used to always say "If you can joke about something, it doesn't have any power. "

And it's kind of like Melissa's sig "The truth does not change based on your ability to stomach it" Or something close to that.

*shrug* My 2 shekels
 
A

Allie

New member
I'm going to make a really stupid comparison. To me, it's like the people who won't say Voldemort in Harry Potter. They are letting him have a huge measure of control by the very fear of his name. So it is with death. If you can talk about it, joke about it, etc....what power does it have? The fear dissipates.

Ry used to always say "If you can joke about something, it doesn't have any power. "

And it's kind of like Melissa's sig "The truth does not change based on your ability to stomach it" Or something close to that.

*shrug* My 2 shekels
 
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Emily65Roses

New member
We should start calling CF "You Know Who" and death "He Who Must Not Be Named" !!!!!

I love nerdy comparisons. <img src="i/expressions/heart.gif" border="0">
 
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