You'll all like this.

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sam123

New member
P.S.
WHY does this board have to be so negative. I don't think Rutgersnyy is braging, and who's to say they won;t live to 70 w/o any real issues. Someone can do all the treatments in the world and die at 18 and others can do none at all and live more than 40 years, WE are not all the same and should be able to reconize that there are diff views of CF and accept them for the purpose they serve. I want to hear the severe cases and I want to hear the exemplary ones, if it was not for both views, this site would be boring and could be titled, MY CF and NEAR DEATH or MILD CF FOREVER......u guys r right, CF is progressive and we all know our limitations or where we think they r, but some can push these limits to the extreme, others can't because they don't want to or in most cases just truly can't, because of their health, but in the end we all still live daily w/CF
 
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Emily65Roses

New member
Rock on if you want to live that way, Rutgers.

But don't call the rest of us down for accepting what we perceive (and the rest of the world, for that matter) perceives to be <b><u>reality</b></u>. Mmkay?
 
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Emily65Roses

New member
Rock on if you want to live that way, Rutgers.

But don't call the rest of us down for accepting what we perceive (and the rest of the world, for that matter) perceives to be <b><u>reality</b></u>. Mmkay?
 
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Emily65Roses

New member
Rock on if you want to live that way, Rutgers.

But don't call the rest of us down for accepting what we perceive (and the rest of the world, for that matter) perceives to be <b><u>reality</b></u>. Mmkay?
 
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Rutgersnyy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>

Rock on if you want to live that way, Rutgers.



But don't call the rest of us down for accepting what we perceive (and the rest of the world, for that matter) perceives to be <b><u>reality</b></u>. Mmkay?</end quote></div>

That is my whole point, the rest of the world accepts that so you feel comfortable believing there is nothing you can do so why try. No one preaches tough love, no one wants to sound cold hearted, not even doctors. If you can look in the mirror and truly believe are doing all you can do then my hat's off to you.

I try not to take what everyone else says to heart, so what they believe means nothing to me. I do know my body, and even though I am human and have CF, I know I can accomplish much. That is my reality. And I have already achieved so much more than anyone thought when I was born.

A Progressive Disease does not mean you don't have a say in how fast it progresses. I know it might be easier to ignore that because it will take a lot of work and you may fail. And that might be too tough of a reality.
 
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Rutgersnyy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>

Rock on if you want to live that way, Rutgers.



But don't call the rest of us down for accepting what we perceive (and the rest of the world, for that matter) perceives to be <b><u>reality</b></u>. Mmkay?</end quote></div>

That is my whole point, the rest of the world accepts that so you feel comfortable believing there is nothing you can do so why try. No one preaches tough love, no one wants to sound cold hearted, not even doctors. If you can look in the mirror and truly believe are doing all you can do then my hat's off to you.

I try not to take what everyone else says to heart, so what they believe means nothing to me. I do know my body, and even though I am human and have CF, I know I can accomplish much. That is my reality. And I have already achieved so much more than anyone thought when I was born.

A Progressive Disease does not mean you don't have a say in how fast it progresses. I know it might be easier to ignore that because it will take a lot of work and you may fail. And that might be too tough of a reality.
 
R

Rutgersnyy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>

Rock on if you want to live that way, Rutgers.



But don't call the rest of us down for accepting what we perceive (and the rest of the world, for that matter) perceives to be <b><u>reality</b></u>. Mmkay?</end quote></div>

That is my whole point, the rest of the world accepts that so you feel comfortable believing there is nothing you can do so why try. No one preaches tough love, no one wants to sound cold hearted, not even doctors. If you can look in the mirror and truly believe are doing all you can do then my hat's off to you.

I try not to take what everyone else says to heart, so what they believe means nothing to me. I do know my body, and even though I am human and have CF, I know I can accomplish much. That is my reality. And I have already achieved so much more than anyone thought when I was born.

A Progressive Disease does not mean you don't have a say in how fast it progresses. I know it might be easier to ignore that because it will take a lot of work and you may fail. And that might be too tough of a reality.
 
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coltsfan715

New member
Okay maybe I have no reason to take offense to practically EVERYTHING that you have said Rutgers ... BUT I have.

For one - I try and I do things that I am able to do - BUT when you are functioning with 30% lung function and working with O2 sats in the low 90s because your lungs have been beaten and battered from infection after infection then explain to me how I am supposed to run a mile - or climb a gajillion stairs a day or bench anything weighing more than a gallon of milk (lol - exagerating people), or ride a bike without hyperventilating or feeling like I am going to die because I can't breathe.

I am not miserable I am not unhappy. I get scared at times but that is because I have NOT been able to control things with my health in recent years. I used to have no problem keeping things under control with CF - though I will say I NEVER recall having lung function in the 90s - except maybe when I was under the age of 10. I thought for a period of time that I would never -- NEVER -- let CF get me.

I have tried supplements and am still trying them I am trying walking as a form of exercise because it is all I can do right now and YA KNOW WHAT? I am still losing lung function. I am STILL short of breath I am still feeling physically crummy many days - BUT I keep going.

Just because someone may be having difficulty with their health does not mean they are unhappy. Just because someone has low lung function and is UNABLE To do things doesn't mean they don't try. To sit and assume that someone at 30% could run a mile IF THEY PUT THEIR MIND TO IT is crazy to me.

I also think you are wrong I think people do preach tough love - I hear that phrase more times than I care to recall, people I know sound cold hearted all the time. On this site people may not always be that way, but I think that is because people try to support others on here even if they don't see things the same way or even if they are not in the same position as the other person.

I do not think that everyone with CF will die from CF - but I think the odds may be against many and that most of us probably will at least have some serious issues/setbacks with CF and some very tough moments on the way. I try not to listen to people sometimes too - but I do listen to my body and believe it or not there IS more to a person's ability than mental strength at times. If mental strength were all that was needed I could defeat the nation's army with my hands binded and my eye's blindfolded, but alas I can't because my body is not strong enough at present. I say that NOT because I have convinced it it isn't strong enough but because IT has convinced me it is not strong enough to do the things that I used to be able to do.

Why would anyone NOT try to get better because they are afraid they will fail that is just dumb. I know there are things - supplement wise - that I have not tried because they can be dangerous and I don't want to play around with what little lung function I have left at this point, but if someone could offer me something that could help and had relatively few side effects then I would try it.

Anyone on the face of this planet has the right to say the can't do something, but because of people with your mentality many of them don't. I went for years practically killing myself to do things that were too much for me and all I would do is get sick and end up in the hospital. I have JUST now in recent months gotten to a point where I can accept that some things are out of my reach at the current moment. Does that mean I am not going to try to get them back .. NO but I am accepting I can't do them now and I am not going to be depressed if I don't get those abilities back either. It is a part of life at times.

That is great that you have never had to call in sick and that you have only been hospitalized once ... to put things into perspective for you and make you realize that sometimes things just don't work out the same way for everyone with CF. I have been hospitalized roughly every year of my life - with the past few years increasing in frequency to 2 times a year and this year 3. I WISH that I had only been sick and in the hospital once, but it didn't work out that way - not because I didn't put my mind to not being sick - but because I couldn't get rid of the cold that didn't listen to my mind saying ... I am not going to get sick.

As for not looking handicapped that is fine and I enjoy not having any obvious physical problems BUT at the same time I sometimes just wish there was something about me that screamed ... SHE CAN'T BREATHE(cause that is how I feel sometimes) lol it would make things so much easier than having to explain why I can't walk faster, why I can't lift heavy things AND carry them and so on.

I don't believe you should use CF as an excuse and for that reason I never told anyone I had CF because I didn't want to be treated differently - as MANY people on this site deal with everyday. I do think CF is a reason or explanation that is perfectly viable and realistic though. It IS the reason that our lung function ultimately takes a hit - when it does - I know YOURS isn't going too ... but whatever I mean in general.

I can appreciate your point of view but like I said pretty much everything you said offended me because I am someone that HAS tried several things to improve my health in the past year and a half since I have become more "sick" as my lung function slipped I started grappling at different things HOPING something would make a difference and ya know what - no matter how many times I thought THIS IS GOING TO HELP THIS IS GOING TO DO THE TRICK ... it hasn't yet. I am still sitting here struggling to get better. I think your point of view is admirable in some respects but I also think it is a bit misguided in others. Learn to appreciate other people's struggles and not just compare them to your own and say or indicate that if they person REALLY tried they could do it. I know for me I REALLY tried alot of things and I am sure many others on here have as well. For some the things they tried helped a little for some they helped a lot, for others not so much. It is the way of life. If there was ONE sure fire way to stay healthy life would be easy and we all know it isn't - there is NO sure fire way for anything let alone staying healthy with CF.

Then again .. if you put your mind to it .. maybe you can cure yourself ... okay sorry that was catty but seriously. There ARE some things that are just not in our control no matter how badly we want them to be.

Happy Holidays,
Linds
 
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coltsfan715

New member
Okay maybe I have no reason to take offense to practically EVERYTHING that you have said Rutgers ... BUT I have.

For one - I try and I do things that I am able to do - BUT when you are functioning with 30% lung function and working with O2 sats in the low 90s because your lungs have been beaten and battered from infection after infection then explain to me how I am supposed to run a mile - or climb a gajillion stairs a day or bench anything weighing more than a gallon of milk (lol - exagerating people), or ride a bike without hyperventilating or feeling like I am going to die because I can't breathe.

I am not miserable I am not unhappy. I get scared at times but that is because I have NOT been able to control things with my health in recent years. I used to have no problem keeping things under control with CF - though I will say I NEVER recall having lung function in the 90s - except maybe when I was under the age of 10. I thought for a period of time that I would never -- NEVER -- let CF get me.

I have tried supplements and am still trying them I am trying walking as a form of exercise because it is all I can do right now and YA KNOW WHAT? I am still losing lung function. I am STILL short of breath I am still feeling physically crummy many days - BUT I keep going.

Just because someone may be having difficulty with their health does not mean they are unhappy. Just because someone has low lung function and is UNABLE To do things doesn't mean they don't try. To sit and assume that someone at 30% could run a mile IF THEY PUT THEIR MIND TO IT is crazy to me.

I also think you are wrong I think people do preach tough love - I hear that phrase more times than I care to recall, people I know sound cold hearted all the time. On this site people may not always be that way, but I think that is because people try to support others on here even if they don't see things the same way or even if they are not in the same position as the other person.

I do not think that everyone with CF will die from CF - but I think the odds may be against many and that most of us probably will at least have some serious issues/setbacks with CF and some very tough moments on the way. I try not to listen to people sometimes too - but I do listen to my body and believe it or not there IS more to a person's ability than mental strength at times. If mental strength were all that was needed I could defeat the nation's army with my hands binded and my eye's blindfolded, but alas I can't because my body is not strong enough at present. I say that NOT because I have convinced it it isn't strong enough but because IT has convinced me it is not strong enough to do the things that I used to be able to do.

Why would anyone NOT try to get better because they are afraid they will fail that is just dumb. I know there are things - supplement wise - that I have not tried because they can be dangerous and I don't want to play around with what little lung function I have left at this point, but if someone could offer me something that could help and had relatively few side effects then I would try it.

Anyone on the face of this planet has the right to say the can't do something, but because of people with your mentality many of them don't. I went for years practically killing myself to do things that were too much for me and all I would do is get sick and end up in the hospital. I have JUST now in recent months gotten to a point where I can accept that some things are out of my reach at the current moment. Does that mean I am not going to try to get them back .. NO but I am accepting I can't do them now and I am not going to be depressed if I don't get those abilities back either. It is a part of life at times.

That is great that you have never had to call in sick and that you have only been hospitalized once ... to put things into perspective for you and make you realize that sometimes things just don't work out the same way for everyone with CF. I have been hospitalized roughly every year of my life - with the past few years increasing in frequency to 2 times a year and this year 3. I WISH that I had only been sick and in the hospital once, but it didn't work out that way - not because I didn't put my mind to not being sick - but because I couldn't get rid of the cold that didn't listen to my mind saying ... I am not going to get sick.

As for not looking handicapped that is fine and I enjoy not having any obvious physical problems BUT at the same time I sometimes just wish there was something about me that screamed ... SHE CAN'T BREATHE(cause that is how I feel sometimes) lol it would make things so much easier than having to explain why I can't walk faster, why I can't lift heavy things AND carry them and so on.

I don't believe you should use CF as an excuse and for that reason I never told anyone I had CF because I didn't want to be treated differently - as MANY people on this site deal with everyday. I do think CF is a reason or explanation that is perfectly viable and realistic though. It IS the reason that our lung function ultimately takes a hit - when it does - I know YOURS isn't going too ... but whatever I mean in general.

I can appreciate your point of view but like I said pretty much everything you said offended me because I am someone that HAS tried several things to improve my health in the past year and a half since I have become more "sick" as my lung function slipped I started grappling at different things HOPING something would make a difference and ya know what - no matter how many times I thought THIS IS GOING TO HELP THIS IS GOING TO DO THE TRICK ... it hasn't yet. I am still sitting here struggling to get better. I think your point of view is admirable in some respects but I also think it is a bit misguided in others. Learn to appreciate other people's struggles and not just compare them to your own and say or indicate that if they person REALLY tried they could do it. I know for me I REALLY tried alot of things and I am sure many others on here have as well. For some the things they tried helped a little for some they helped a lot, for others not so much. It is the way of life. If there was ONE sure fire way to stay healthy life would be easy and we all know it isn't - there is NO sure fire way for anything let alone staying healthy with CF.

Then again .. if you put your mind to it .. maybe you can cure yourself ... okay sorry that was catty but seriously. There ARE some things that are just not in our control no matter how badly we want them to be.

Happy Holidays,
Linds
 
C

coltsfan715

New member
Okay maybe I have no reason to take offense to practically EVERYTHING that you have said Rutgers ... BUT I have.

For one - I try and I do things that I am able to do - BUT when you are functioning with 30% lung function and working with O2 sats in the low 90s because your lungs have been beaten and battered from infection after infection then explain to me how I am supposed to run a mile - or climb a gajillion stairs a day or bench anything weighing more than a gallon of milk (lol - exagerating people), or ride a bike without hyperventilating or feeling like I am going to die because I can't breathe.

I am not miserable I am not unhappy. I get scared at times but that is because I have NOT been able to control things with my health in recent years. I used to have no problem keeping things under control with CF - though I will say I NEVER recall having lung function in the 90s - except maybe when I was under the age of 10. I thought for a period of time that I would never -- NEVER -- let CF get me.

I have tried supplements and am still trying them I am trying walking as a form of exercise because it is all I can do right now and YA KNOW WHAT? I am still losing lung function. I am STILL short of breath I am still feeling physically crummy many days - BUT I keep going.

Just because someone may be having difficulty with their health does not mean they are unhappy. Just because someone has low lung function and is UNABLE To do things doesn't mean they don't try. To sit and assume that someone at 30% could run a mile IF THEY PUT THEIR MIND TO IT is crazy to me.

I also think you are wrong I think people do preach tough love - I hear that phrase more times than I care to recall, people I know sound cold hearted all the time. On this site people may not always be that way, but I think that is because people try to support others on here even if they don't see things the same way or even if they are not in the same position as the other person.

I do not think that everyone with CF will die from CF - but I think the odds may be against many and that most of us probably will at least have some serious issues/setbacks with CF and some very tough moments on the way. I try not to listen to people sometimes too - but I do listen to my body and believe it or not there IS more to a person's ability than mental strength at times. If mental strength were all that was needed I could defeat the nation's army with my hands binded and my eye's blindfolded, but alas I can't because my body is not strong enough at present. I say that NOT because I have convinced it it isn't strong enough but because IT has convinced me it is not strong enough to do the things that I used to be able to do.

Why would anyone NOT try to get better because they are afraid they will fail that is just dumb. I know there are things - supplement wise - that I have not tried because they can be dangerous and I don't want to play around with what little lung function I have left at this point, but if someone could offer me something that could help and had relatively few side effects then I would try it.

Anyone on the face of this planet has the right to say the can't do something, but because of people with your mentality many of them don't. I went for years practically killing myself to do things that were too much for me and all I would do is get sick and end up in the hospital. I have JUST now in recent months gotten to a point where I can accept that some things are out of my reach at the current moment. Does that mean I am not going to try to get them back .. NO but I am accepting I can't do them now and I am not going to be depressed if I don't get those abilities back either. It is a part of life at times.

That is great that you have never had to call in sick and that you have only been hospitalized once ... to put things into perspective for you and make you realize that sometimes things just don't work out the same way for everyone with CF. I have been hospitalized roughly every year of my life - with the past few years increasing in frequency to 2 times a year and this year 3. I WISH that I had only been sick and in the hospital once, but it didn't work out that way - not because I didn't put my mind to not being sick - but because I couldn't get rid of the cold that didn't listen to my mind saying ... I am not going to get sick.

As for not looking handicapped that is fine and I enjoy not having any obvious physical problems BUT at the same time I sometimes just wish there was something about me that screamed ... SHE CAN'T BREATHE(cause that is how I feel sometimes) lol it would make things so much easier than having to explain why I can't walk faster, why I can't lift heavy things AND carry them and so on.

I don't believe you should use CF as an excuse and for that reason I never told anyone I had CF because I didn't want to be treated differently - as MANY people on this site deal with everyday. I do think CF is a reason or explanation that is perfectly viable and realistic though. It IS the reason that our lung function ultimately takes a hit - when it does - I know YOURS isn't going too ... but whatever I mean in general.

I can appreciate your point of view but like I said pretty much everything you said offended me because I am someone that HAS tried several things to improve my health in the past year and a half since I have become more "sick" as my lung function slipped I started grappling at different things HOPING something would make a difference and ya know what - no matter how many times I thought THIS IS GOING TO HELP THIS IS GOING TO DO THE TRICK ... it hasn't yet. I am still sitting here struggling to get better. I think your point of view is admirable in some respects but I also think it is a bit misguided in others. Learn to appreciate other people's struggles and not just compare them to your own and say or indicate that if they person REALLY tried they could do it. I know for me I REALLY tried alot of things and I am sure many others on here have as well. For some the things they tried helped a little for some they helped a lot, for others not so much. It is the way of life. If there was ONE sure fire way to stay healthy life would be easy and we all know it isn't - there is NO sure fire way for anything let alone staying healthy with CF.

Then again .. if you put your mind to it .. maybe you can cure yourself ... okay sorry that was catty but seriously. There ARE some things that are just not in our control no matter how badly we want them to be.

Happy Holidays,
Linds
 
S

shauna

New member
just had to say perfectly said Lindsay! I was going to reply...and say how my entire life i've always thought CF wont kill me until i uncontrollably got sicker...but you said it all for me!

happy holidays to all

x
 
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shauna

New member
just had to say perfectly said Lindsay! I was going to reply...and say how my entire life i've always thought CF wont kill me until i uncontrollably got sicker...but you said it all for me!

happy holidays to all

x
 
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shauna

New member
just had to say perfectly said Lindsay! I was going to reply...and say how my entire life i've always thought CF wont kill me until i uncontrollably got sicker...but you said it all for me!

happy holidays to all

x
 
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JazzysMom

New member
Lindsey, you took the words right out of my head, but presented it so much better. For that I thank you & as already said....Happy Holidays to All!
 
J

JazzysMom

New member
Lindsey, you took the words right out of my head, but presented it so much better. For that I thank you & as already said....Happy Holidays to All!
 
J

JazzysMom

New member
Lindsey, you took the words right out of my head, but presented it so much better. For that I thank you & as already said....Happy Holidays to All!
 
O

onlyoneloveinmylife

New member
Lindsay, well said. Bravo.


some people just won't get it until they are in our shoes. for most CFers there comes a time when we just can't control CF anymore, and it's not from a lack of trying. hopefully these people never have to learn. i think it's best to ignore these kinds of people, cause you can't win. it's like talking to a wall.
 
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