Don't wait on Death

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Brad

New member
I guess I am very lucky being 49 with Cf, still working and I have a Son,( he is Healthy )

I hear people talking about the time of their death. I went through all my life, Waiting.
When I was 8 I heard a doctor tell my mother that I would not live long enough to
finish high school, so I went thru life waiting on death,,,,,,what a waste of time it was...
Death comes to everyone, Cf or no Cf , I would like to go back in time and knock the
hell out of those doctors, the charts and life tables thay have don't mean Sh*t !!!!!

I say Live forget about death, it will come when it comes and NO ONE, not even the Best
doctors can say when it will happen... God calls is all when the time is right,,,,,,,,,,,,

It pisses me off when I hear Young people with Cf worried about death those damn
doctors cause a lot of pain and worry for no Good reason, They fill our heads with
their life charts, a chart is nothing more than a guess and that is ALL.......
I had a doc tell me back in 88 that I had maybe 3 years , ( up yours doc ) So stop guessing and waiting ( like I did ) and Just Live the Best Life You can,,,,
After all, that is all anyone can Do, Cf or no Cf,,,,,,,,

Live and Be Happy
 
B

Brad

New member
I guess I am very lucky being 49 with Cf, still working and I have a Son,( he is Healthy )

I hear people talking about the time of their death. I went through all my life, Waiting.
When I was 8 I heard a doctor tell my mother that I would not live long enough to
finish high school, so I went thru life waiting on death,,,,,,what a waste of time it was...
Death comes to everyone, Cf or no Cf , I would like to go back in time and knock the
hell out of those doctors, the charts and life tables thay have don't mean Sh*t !!!!!

I say Live forget about death, it will come when it comes and NO ONE, not even the Best
doctors can say when it will happen... God calls is all when the time is right,,,,,,,,,,,,

It pisses me off when I hear Young people with Cf worried about death those damn
doctors cause a lot of pain and worry for no Good reason, They fill our heads with
their life charts, a chart is nothing more than a guess and that is ALL.......
I had a doc tell me back in 88 that I had maybe 3 years , ( up yours doc ) So stop guessing and waiting ( like I did ) and Just Live the Best Life You can,,,,
After all, that is all anyone can Do, Cf or no Cf,,,,,,,,

Live and Be Happy
 
C

CowTown

New member
See Brad, you inspire me. I knew it. Thanks for sharing your view about this. I grew up "waiting" too!!! I've never heard anyone else mention that. I took it out on myself as a result because I wanted to experience all these things before I died, so I think I was trying to speed up the process. Very strange, but it stemmed from the information I got from doctors. Once I hit about 18, I realized that maybe I wasn't going to die so young. That's when I started picking up my act and taking better care of myself. In 1997, I had a doctor tell me I had about 2 years left before I would need a transplant. That scared me to no end, but boy....he was wrong. I think it's very important too to live and not wait. Although I have been struggling with this lately, I do believe that is what everyone SHOULD be doing.

Well, I will keep these thoughts with me as I try and get out of worrying about how long I will be here with my new husband. It's true that that is wasted time, but hard to get out of your mind sometimes.
 
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CowTown

New member
See Brad, you inspire me. I knew it. Thanks for sharing your view about this. I grew up "waiting" too!!! I've never heard anyone else mention that. I took it out on myself as a result because I wanted to experience all these things before I died, so I think I was trying to speed up the process. Very strange, but it stemmed from the information I got from doctors. Once I hit about 18, I realized that maybe I wasn't going to die so young. That's when I started picking up my act and taking better care of myself. In 1997, I had a doctor tell me I had about 2 years left before I would need a transplant. That scared me to no end, but boy....he was wrong. I think it's very important too to live and not wait. Although I have been struggling with this lately, I do believe that is what everyone SHOULD be doing.

Well, I will keep these thoughts with me as I try and get out of worrying about how long I will be here with my new husband. It's true that that is wasted time, but hard to get out of your mind sometimes.
 
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thelizardqueen

New member
When I was 13, I had a doc tell me that my CF was getting a lot worse, and that I should start taking better control of myself. 11 years later, and no - my CF was not getting worse, I've only been on IV once, and my docs tell me that I'm in great condition for someone who has CF. In fact, I've been told that people would never have known that I have CF because I am hardly as sick.
 
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thelizardqueen

New member
When I was 13, I had a doc tell me that my CF was getting a lot worse, and that I should start taking better control of myself. 11 years later, and no - my CF was not getting worse, I've only been on IV once, and my docs tell me that I'm in great condition for someone who has CF. In fact, I've been told that people would never have known that I have CF because I am hardly as sick.
 
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Beth

New member
One of my sisters nurses told her an age that she could expect to make it to. I can't remember what it was maybe 30 or so. She was 12 and wants to have kids. If I would have been in the room at that time I would have punched that lady. She had no right to say that to my sister or any young person. When my sister was first diagnosed I was so mad. One of the only thoughts running through my mind was I want to die before my sister. It is not going to happen the other way around. I would bet money that my sister will live longer than me, she will be a mother, and anyone who thinks otherwise can kiss my @$$. She thinks a lot about when she will die. How she will live on her own. If she will have kids. Can she get a job. She is 14 she should not be worried about these things. She is smart and funny and a kind person. I would give anything to see her be a mom, married, and supporting herself as best as she can. I really wish that she would come to this site and see that these things do happen for people like her. I wish she would put the quantity of life out of her mind and focus on the quality of it. I know that everyone thinks about death CF or no but it doesn't help to dwell on it.
 
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Beth

New member
One of my sisters nurses told her an age that she could expect to make it to. I can't remember what it was maybe 30 or so. She was 12 and wants to have kids. If I would have been in the room at that time I would have punched that lady. She had no right to say that to my sister or any young person. When my sister was first diagnosed I was so mad. One of the only thoughts running through my mind was I want to die before my sister. It is not going to happen the other way around. I would bet money that my sister will live longer than me, she will be a mother, and anyone who thinks otherwise can kiss my @$$. She thinks a lot about when she will die. How she will live on her own. If she will have kids. Can she get a job. She is 14 she should not be worried about these things. She is smart and funny and a kind person. I would give anything to see her be a mom, married, and supporting herself as best as she can. I really wish that she would come to this site and see that these things do happen for people like her. I wish she would put the quantity of life out of her mind and focus on the quality of it. I know that everyone thinks about death CF or no but it doesn't help to dwell on it.
 
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mcbrash

New member
Oh how many times I had wished that I had never been told a life expectancy for my son. Matt was born in 1978 and at that time I was told that the longest we could expect him to be with us was 16/17. Of course when you are told something like that you obvioulsy don't think your child has much of a future to look forward to and you do your best to make sure the time you do have with him/her is the best you can possibly have. Well Matt fooled those Drs. and lived until he was 27, he passed away last May but there are so many things that I'd have done differently had I not been told those few words. Each and every time that he would get sick I would be asking myself "is this it, am I going to lose him now?"

Even though grieve now and will do for the rest of my life, I actually started grieving back in 1978 when first being told about his illness and "how long" he would be with us.

Sandy
 
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mcbrash

New member
Oh how many times I had wished that I had never been told a life expectancy for my son. Matt was born in 1978 and at that time I was told that the longest we could expect him to be with us was 16/17. Of course when you are told something like that you obvioulsy don't think your child has much of a future to look forward to and you do your best to make sure the time you do have with him/her is the best you can possibly have. Well Matt fooled those Drs. and lived until he was 27, he passed away last May but there are so many things that I'd have done differently had I not been told those few words. Each and every time that he would get sick I would be asking myself "is this it, am I going to lose him now?"

Even though grieve now and will do for the rest of my life, I actually started grieving back in 1978 when first being told about his illness and "how long" he would be with us.

Sandy
 
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Faust

New member
My story mirrors Brad's. I was an actual poster child for the Cystic Fibrosis foundation. One of the earliest memories I have was overhearing the doc tell me mom that I wouldn't live to see 5. Then it became 10, then 15, then the dreaded all killer - 20. I had some rough times in my teens, but I "leveled out" into my 20's. Here I am, about to turn 35, and I have 99% PFT's, I am 6 feet tall, and weigh 206 lbs. When i was lifting weights big time, evey person I met that found out I had CF all said "wow man, I would have never guessed, you look so normal". To me, I think the biggest intangible part about living long with CF is tenacity and being an overall mean SOB. Sure you can do everything right treatment wise, but if you are one of those passive types that just throws themselves at the docs and wants them to do everything for them with magic pills and magic IV's, those people are MUCH more likely to die much younger than the guy who does all the right things treatment and supplement wise, but has that tough as nails mentality regarding their disease. I fully believe a very strong, tough as nails mentality regarding our disease does wonders for longevity.
 
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Faust

New member
My story mirrors Brad's. I was an actual poster child for the Cystic Fibrosis foundation. One of the earliest memories I have was overhearing the doc tell me mom that I wouldn't live to see 5. Then it became 10, then 15, then the dreaded all killer - 20. I had some rough times in my teens, but I "leveled out" into my 20's. Here I am, about to turn 35, and I have 99% PFT's, I am 6 feet tall, and weigh 206 lbs. When i was lifting weights big time, evey person I met that found out I had CF all said "wow man, I would have never guessed, you look so normal". To me, I think the biggest intangible part about living long with CF is tenacity and being an overall mean SOB. Sure you can do everything right treatment wise, but if you are one of those passive types that just throws themselves at the docs and wants them to do everything for them with magic pills and magic IV's, those people are MUCH more likely to die much younger than the guy who does all the right things treatment and supplement wise, but has that tough as nails mentality regarding their disease. I fully believe a very strong, tough as nails mentality regarding our disease does wonders for longevity.
 
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Ben

Guest
Very well said Brad!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I think right along the same lines as you! I heard this quote once and thought about it after I read your post..."Get busy living..or get busy dying." Life is too short (for everyone in the world) for us to just sit around waiting for it to end. I agree...some (not all) people need to be more optimistic and stop and smell the flowers (as they say).
Thanks for posting this! Have a nice day! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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Ben

Guest
Very well said Brad!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I think right along the same lines as you! I heard this quote once and thought about it after I read your post..."Get busy living..or get busy dying." Life is too short (for everyone in the world) for us to just sit around waiting for it to end. I agree...some (not all) people need to be more optimistic and stop and smell the flowers (as they say).
Thanks for posting this! Have a nice day! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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thelizardqueen

New member
I'm in the same boat as you SeanDavis. When I was diagnosed at 6 weeks, the docs informed my mum that I wouldn't live past 6, and then 12, then 16, then 24. Well I'm 24 now and am incredibly healthy. I can say with almost certainty that I will live a lot longer then 24. I have, and always will prove those doctors wrong!
 
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thelizardqueen

New member
I'm in the same boat as you SeanDavis. When I was diagnosed at 6 weeks, the docs informed my mum that I wouldn't live past 6, and then 12, then 16, then 24. Well I'm 24 now and am incredibly healthy. I can say with almost certainty that I will live a lot longer then 24. I have, and always will prove those doctors wrong!
 
A

Allie

New member
I don't think anyone waits on death, but I think it's natural to be curious about something that is more likely to happen to you at a young age than your peers. I know we all talk about that errant bus and what not, but the fact of the matter is, that bud will likely never come. I agree with not sitting around waiting to die, but I think few people do that, I just think they have a natural curiousity that shouldn't be discouraged as "waiting to die". I hate it whenever I see taboos or stigma attached to the dicussion about death, because it can make it that much more hidden and frightening. Death is a reality. And there's nothing wrong with reality. I think about death, and I don't even have CF.


I hate when it turns into "If you talk about death, you're a negative nancy, etc" The odds of dying, of CF, younger than your peers is high. It's natural to be curious. I'd rather someone satisfied that than live in fear of it. I know there are people who agree iwth me but I doubt they'll speak up, so feel free to ream em if you choose.
 
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Allie

New member
I don't think anyone waits on death, but I think it's natural to be curious about something that is more likely to happen to you at a young age than your peers. I know we all talk about that errant bus and what not, but the fact of the matter is, that bud will likely never come. I agree with not sitting around waiting to die, but I think few people do that, I just think they have a natural curiousity that shouldn't be discouraged as "waiting to die". I hate it whenever I see taboos or stigma attached to the dicussion about death, because it can make it that much more hidden and frightening. Death is a reality. And there's nothing wrong with reality. I think about death, and I don't even have CF.


I hate when it turns into "If you talk about death, you're a negative nancy, etc" The odds of dying, of CF, younger than your peers is high. It's natural to be curious. I'd rather someone satisfied that than live in fear of it. I know there are people who agree iwth me but I doubt they'll speak up, so feel free to ream em if you choose.
 
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