Emily65Roses
New member
Allie wasn't thoughtless. She was just truthful, and you don't want to hear it. That's your problem, not ours.
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
CF Progresion
- Thread starter anonymous
- Start date
This person put it best:
<div class="FTQUOTE"><begin quote>
If you ask about progression, you'll get answers about progression.
Progression is from mild>moderate>severe>end stage>death.
Pace is hard to predict for an individual.
</end quote></div>
I was honest, and I tend to teach my kiddo, like I was taught by my mother, that if someone asks you a question, you tell them the truth. All I did was tell her the truth. If people can't handle it, it's not my problem, and I refuse to let it be, I beat myself enough as is without letting people rag on me for being honest.
<div class="FTQUOTE"><begin quote>
If you ask about progression, you'll get answers about progression.
Progression is from mild>moderate>severe>end stage>death.
Pace is hard to predict for an individual.
</end quote></div>
I was honest, and I tend to teach my kiddo, like I was taught by my mother, that if someone asks you a question, you tell them the truth. All I did was tell her the truth. If people can't handle it, it's not my problem, and I refuse to let it be, I beat myself enough as is without letting people rag on me for being honest.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>luke</b></i>
I think it ironic that that several have commented Charlotte shouldn't post questions in the adult section when many of your responses reflect the manners of a chilld. I guess I missed the rule where people were allowed to be thoughtless and rude in the adult section but not in the family section. I find it embarrassing that a forum created for support can be so rude to a mother trying to understand and cope with CF in her child. With that being said...if the intent is to attack me because Allie was thoughtless and I called her on it that is fine. I just suggest you find a better point to do it on and leave frightened mothers looking for support out of it.
luke</end quote></div>
Deja Vu.
All I'll say is that I hear you and agree, and that this conversation won't go any further than what's already been said. Been there done that.
I think it ironic that that several have commented Charlotte shouldn't post questions in the adult section when many of your responses reflect the manners of a chilld. I guess I missed the rule where people were allowed to be thoughtless and rude in the adult section but not in the family section. I find it embarrassing that a forum created for support can be so rude to a mother trying to understand and cope with CF in her child. With that being said...if the intent is to attack me because Allie was thoughtless and I called her on it that is fine. I just suggest you find a better point to do it on and leave frightened mothers looking for support out of it.
luke</end quote></div>
Deja Vu.
All I'll say is that I hear you and agree, and that this conversation won't go any further than what's already been said. Been there done that.
thelizardqueen
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>luke</b></i>
many of your responses reflect the manners of a chilld. I guess I missed the rule where people were allowed to be thoughtless and rude in the adult section but not in the family section. I find it embarrassing that a forum created for support can be so rude to a mother trying to understand and cope with CF in her child. With that being said...if the intent is to attack me because Allie was thoughtless and I called her on it that is fine. I just suggest you find a better point to do it on and leave frightened mothers looking for support out of it.
luke</end quote></div>
First off, Allie wasn't being rude. She stated a simple fact. Whether anyone wanted to hear it or not, it was a fact. That you don't like what she said is not her problem. Second, I guess I missed the part where when someone tells the truth they are being a child. I don't recall reading anything that sounded childish to me, but then again, maybe when people tell the truth, that's being childish. I think its childish that people are calling her out and telling her not to state the fact that CF progression eventually means death.
many of your responses reflect the manners of a chilld. I guess I missed the rule where people were allowed to be thoughtless and rude in the adult section but not in the family section. I find it embarrassing that a forum created for support can be so rude to a mother trying to understand and cope with CF in her child. With that being said...if the intent is to attack me because Allie was thoughtless and I called her on it that is fine. I just suggest you find a better point to do it on and leave frightened mothers looking for support out of it.
luke</end quote></div>
First off, Allie wasn't being rude. She stated a simple fact. Whether anyone wanted to hear it or not, it was a fact. That you don't like what she said is not her problem. Second, I guess I missed the part where when someone tells the truth they are being a child. I don't recall reading anything that sounded childish to me, but then again, maybe when people tell the truth, that's being childish. I think its childish that people are calling her out and telling her not to state the fact that CF progression eventually means death.
OK. I'm home now and can actually sign on.
Actually, Luke, it was your post that had ticked me off the most - tho' Charlotte's desire to be somewhat coddled because she was sensitive hadn't made my day either.
In my mind this Adult Forum is the ONE and ONLY place where adult CFers can be completely frank with one another without having to protect others in their lives, IMHO they should not have to namby pamby around or sugar coat the truth up on this board to protect parents, spouses, friends, etc. They probably all do that a bit (or a lot) in the real world.
For Charlotte to be upset that someone said progression goes from mild eventually and finally to dead is her problem.
For you to ask adults folks to be "sensitive" and "polite" because a parent has posted is to disenfranchise those adults and ask them to "fake it" just one more time.
Debbie, pointed out the difference just fine in my opinion. Other parents (Jane comes to mind immediately) have posted their question twice sometimes (once in Families and once in Adults) with the Adult post being phrased "I want to know how you all see it". I think its perfectly reasonable when posting in adults to get the adult viewpoint - as blunt as that might be.
You might find my viewpoint childish...and that's just fine with me.
It's kind of interesting to be called childish when I'm a 61-year old.
Actually, Luke, it was your post that had ticked me off the most - tho' Charlotte's desire to be somewhat coddled because she was sensitive hadn't made my day either.
In my mind this Adult Forum is the ONE and ONLY place where adult CFers can be completely frank with one another without having to protect others in their lives, IMHO they should not have to namby pamby around or sugar coat the truth up on this board to protect parents, spouses, friends, etc. They probably all do that a bit (or a lot) in the real world.
For Charlotte to be upset that someone said progression goes from mild eventually and finally to dead is her problem.
For you to ask adults folks to be "sensitive" and "polite" because a parent has posted is to disenfranchise those adults and ask them to "fake it" just one more time.
Debbie, pointed out the difference just fine in my opinion. Other parents (Jane comes to mind immediately) have posted their question twice sometimes (once in Families and once in Adults) with the Adult post being phrased "I want to know how you all see it". I think its perfectly reasonable when posting in adults to get the adult viewpoint - as blunt as that might be.
You might find my viewpoint childish...and that's just fine with me.
It's kind of interesting to be called childish when I'm a 61-year old.
M
melleemac
Guest
Speaking as a cf mother of two, I wish somebody had been alot more blunt with me when my kids were diagnosed! I learned an awful lot about cf the hard way. When the boys were first diagnosedI was told just that it was disease of the lung and digestive system. No one bothered telling me about any of the other effects it could have. Basically I found out after the boys were diagnosed with one thing after another i e the kidney dyalasis. Every time the Drs would find something else wrong with them it was like being kicked in the gut.
Personally, Im am glad that I can come somewhere and get an honest anwer, instead of the normal hums and ahs I get half the time when consulting a physician! For that I am thankful.
Mel
Personally, Im am glad that I can come somewhere and get an honest anwer, instead of the normal hums and ahs I get half the time when consulting a physician! For that I am thankful.
Mel
JennifersHope
New member
General statement.. I am the first to admit that I have denial issues, not as bad as I was but still have it. I have been around this board long enough to know to take things with a grain or even at times, a truck load of salt.
I have only been diagnoised with CF for a short period of time considering a lot of you have known you whole lives and now you are adults. On this board, I have never ever been shown anything but love and support. I have been told to give myself a break, be good to myself, to give myself time.
The very people who are harsh about reality.. or who don't have problems with their reality are the very same ones who have told me to relax and be good to myself. ( mainly Emily because I used to talk to her a lot still do when I can ) Emily and I have different veiws on a lot of things, she has had her whole life to get use to her CF so she has no trouble saying it like she sees it. She is very good at lending support to me. She has helped me deal with things because she is more in touch with certain realities then I am. I have asked her a zillion questions. SHe has never told me tough sh** deal. NEVER. I in turn would never say that to a parent that has had even less time then me. I also talk to Allie often. I know that she is going through Hell right now, and doesn't have it in her to sugar coat anything, or even be to positive about anything right now. That is fine. Anyone who talked to her would know she is stuggling to survive right now and also that she is a very loving soul.
I do not veiw all aspects of CF the same way as a lot of you do, I am in a different place. Mostly still trying to find my way.. But thanks to everyones help on here, I am much better. I do think that we need to be honest with ourselves and with others about how we feel about things but I also feel bad for this mom because she is not used to the idea yet, this is new for her. I don't think she should have to suck it up and get used to it just yet and told tough crap lady your kid is going to die. No one expected that of me thankfully. I would probably have shot myself. Really No one is taking away anyones right to be expressive. But for me I do feel a little sense of obligation to try to help newer people deal in the best way for them. Only to give back what I was given.
Again, not directed at anyone. I just can't stand seeing this kind of thing.
Jennifer
I have only been diagnoised with CF for a short period of time considering a lot of you have known you whole lives and now you are adults. On this board, I have never ever been shown anything but love and support. I have been told to give myself a break, be good to myself, to give myself time.
The very people who are harsh about reality.. or who don't have problems with their reality are the very same ones who have told me to relax and be good to myself. ( mainly Emily because I used to talk to her a lot still do when I can ) Emily and I have different veiws on a lot of things, she has had her whole life to get use to her CF so she has no trouble saying it like she sees it. She is very good at lending support to me. She has helped me deal with things because she is more in touch with certain realities then I am. I have asked her a zillion questions. SHe has never told me tough sh** deal. NEVER. I in turn would never say that to a parent that has had even less time then me. I also talk to Allie often. I know that she is going through Hell right now, and doesn't have it in her to sugar coat anything, or even be to positive about anything right now. That is fine. Anyone who talked to her would know she is stuggling to survive right now and also that she is a very loving soul.
I do not veiw all aspects of CF the same way as a lot of you do, I am in a different place. Mostly still trying to find my way.. But thanks to everyones help on here, I am much better. I do think that we need to be honest with ourselves and with others about how we feel about things but I also feel bad for this mom because she is not used to the idea yet, this is new for her. I don't think she should have to suck it up and get used to it just yet and told tough crap lady your kid is going to die. No one expected that of me thankfully. I would probably have shot myself. Really No one is taking away anyones right to be expressive. But for me I do feel a little sense of obligation to try to help newer people deal in the best way for them. Only to give back what I was given.
Again, not directed at anyone. I just can't stand seeing this kind of thing.
Jennifer
F
fr3ak
Guest
In my opinion the adults of the CF community have paved the way for the younger generation to walk in our footsteps..just like the CFs before us!
CF was originally known as a childhood disease because of the fact that we just didn't survive long enough to become an adult....
with medication and science of today we have broken the boundaries of death and ventured into uncharted waters of adulthood.
I just think that if someone comes here looking for support or advice or someone to talk to that can relate about either a new partner that they have just become involved with that has CF, or a new baby that has just been diagnosed, what better ppl to be asking questions then the ones that have lived it, the ones that have walked those first steps and make it though childhood and achieved adulthood....(not every CF sees adulthood)
Drs can give you a medical answer, but no one can give you the answers about a disease so intimately then that of someone that has walked with it every day, struggled with it with every breath that we take and poured our whole existence into surviving it....
I know when mum was 8 months pregnant they lost my heartbeat and told her she would still have to wait till she was full term and give birth to a still born...well, I wasn't dead I was very much alive, but things were not going to be easy.... I didn't get diagnosed until I was 6 months old, by that time I was in such a bad state I was only given 3 months to live...and all the drs could say was that if I had of died then my mother would have been charged with neglect...there were no apologies about my misdiagnosis they just sat both my parents down and told them to take me home and love me, Id be dead soon.... I was given my death clock and every time I passed a birthday I was told a new prediction....(needless to say I'm still here so my death clock is still ticking!)
Things don't need to be sugar-coated but try putting yourself in someone else's shoes who comes here looking for support only to be told the very worse case scenario, which I could almost guarantee they already know what the worst case scenario is!
From what I read she didnt ask if her kid was gunna die, or how she was going to die, or when she was going to die,she asked about progression of the disease, her child is only 2 years old, she has a long road to travel before she starts digging the hole to bury her in....
I know from my experiences as an adult the one thing that pissed me off more then anything is being buried long before Im dead, ppl dwell on death and dying far too often ,they waste so much time on it that they eventually forget how to live...(just to clarify I have knocked on deaths door many times and he has answered, but I've managed to slam the door shut)
keep fighting hard, it's all you can do, the day you give up the fight is the day the battle is lost!!
CF was originally known as a childhood disease because of the fact that we just didn't survive long enough to become an adult....
with medication and science of today we have broken the boundaries of death and ventured into uncharted waters of adulthood.
I just think that if someone comes here looking for support or advice or someone to talk to that can relate about either a new partner that they have just become involved with that has CF, or a new baby that has just been diagnosed, what better ppl to be asking questions then the ones that have lived it, the ones that have walked those first steps and make it though childhood and achieved adulthood....(not every CF sees adulthood)
Drs can give you a medical answer, but no one can give you the answers about a disease so intimately then that of someone that has walked with it every day, struggled with it with every breath that we take and poured our whole existence into surviving it....
I know when mum was 8 months pregnant they lost my heartbeat and told her she would still have to wait till she was full term and give birth to a still born...well, I wasn't dead I was very much alive, but things were not going to be easy.... I didn't get diagnosed until I was 6 months old, by that time I was in such a bad state I was only given 3 months to live...and all the drs could say was that if I had of died then my mother would have been charged with neglect...there were no apologies about my misdiagnosis they just sat both my parents down and told them to take me home and love me, Id be dead soon.... I was given my death clock and every time I passed a birthday I was told a new prediction....(needless to say I'm still here so my death clock is still ticking!)
Things don't need to be sugar-coated but try putting yourself in someone else's shoes who comes here looking for support only to be told the very worse case scenario, which I could almost guarantee they already know what the worst case scenario is!
From what I read she didnt ask if her kid was gunna die, or how she was going to die, or when she was going to die,she asked about progression of the disease, her child is only 2 years old, she has a long road to travel before she starts digging the hole to bury her in....
I know from my experiences as an adult the one thing that pissed me off more then anything is being buried long before Im dead, ppl dwell on death and dying far too often ,they waste so much time on it that they eventually forget how to live...(just to clarify I have knocked on deaths door many times and he has answered, but I've managed to slam the door shut)
keep fighting hard, it's all you can do, the day you give up the fight is the day the battle is lost!!
Not singling any one person out here, but in general, it's obvious that there are TONS of people on this forum that are new to the internet. Or atleast new to internet forums. By the way some people react to some benign statements on here, it's as if they had a naked bat guano covered stalker outside their window brandishing a butcher knife. I'd like to see how some of you would have felt being on some of the forums I have been on. I know it's generally nice nice around here, and that's fine with me, but some of the "I have issues with that" things I see here are laughable.
F
fr3ak
Guest
I dunno why all my posts end up with no spaces, grrrr its annoying!
So.....I am confused.
Some people think that sugarcoating is bad and some think that it is good. We obviously have had a lot of responses for both and now it seems to be getting mean. So why can't we agree to disagree and stop this? seems like we are getting no where.
My opinion is that maybe Charlotte knew the end result but wanted it stated sentively instead of bluntly. Not her fault, i can't imagine what it would be like to be a parent to a new CFer. And its not the fault of the blunt people. That is how they like it and good for them.
Lets stop the fighting..please!
(How do people get all those cute smiley faces. i only know this one <img src="i/expressions/face-icon-small-smile.gif" border="0">
Sue 24w/CF
Some people think that sugarcoating is bad and some think that it is good. We obviously have had a lot of responses for both and now it seems to be getting mean. So why can't we agree to disagree and stop this? seems like we are getting no where.
My opinion is that maybe Charlotte knew the end result but wanted it stated sentively instead of bluntly. Not her fault, i can't imagine what it would be like to be a parent to a new CFer. And its not the fault of the blunt people. That is how they like it and good for them.
Lets stop the fighting..please!
(How do people get all those cute smiley faces. i only know this one <img src="i/expressions/face-icon-small-smile.gif" border="0">
Sue 24w/CF
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
So.....I am confused.
Some people think that sugarcoating is bad and some think that it is good. We obviously have had a lot of responses for both and now it seems to be getting mean. So why can't we agree to disagree and stop this? seems like we are getting no where.
My opinion is that maybe Charlotte knew the end result but wanted it stated sentively instead of bluntly. Not her fault, i can't imagine what it would be like to be a parent to a new CFer. And its not the fault of the blunt people. That is how they like it and good for them.
Lets stop the fighting..please!
(How do people get all those cute smiley faces. i only know this one <img src="">
Sue 24w/CF</end quote></div>
Since I have been here (nowhere near as long as many others, but a while now anyways), I have come to realize that if you want things sugarcoated, you have come to the wrong place. I think a large majority of the regular posters here just tell it like it is, without trying to be asses. I know it must suck to be a new parent of a CF'r, but we are going to tell you the truth and be nice about it. If people don't like that, maybe they can go to this other CF forum that is much more geared towards making things sound better than what they are:
www.ultrasugarcoatedcfforum.com
So.....I am confused.
Some people think that sugarcoating is bad and some think that it is good. We obviously have had a lot of responses for both and now it seems to be getting mean. So why can't we agree to disagree and stop this? seems like we are getting no where.
My opinion is that maybe Charlotte knew the end result but wanted it stated sentively instead of bluntly. Not her fault, i can't imagine what it would be like to be a parent to a new CFer. And its not the fault of the blunt people. That is how they like it and good for them.
Lets stop the fighting..please!
(How do people get all those cute smiley faces. i only know this one <img src="">
Sue 24w/CF</end quote></div>
Since I have been here (nowhere near as long as many others, but a while now anyways), I have come to realize that if you want things sugarcoated, you have come to the wrong place. I think a large majority of the regular posters here just tell it like it is, without trying to be asses. I know it must suck to be a new parent of a CF'r, but we are going to tell you the truth and be nice about it. If people don't like that, maybe they can go to this other CF forum that is much more geared towards making things sound better than what they are:
www.ultrasugarcoatedcfforum.com
L
luke
Guest
You know times like these really make me miss Allan. He is the only one I really ever felt challenged me in this forum. With Allan we seemed to debate real issues that made you think. To debate on whether to be kind to someone or not is ridiculous, absolutely fruitless and I will not take part. It does baffle me though how so many people can explain being rude by just saying they are just, "being truthful" "speaking their mind" and are just "blunt".
and Lisa....I don't know you and couldn't care less if I "ticked you off" or not. If you would read the question no one wanted to be coddled. What she did want is an answer to the question, does CF progress differently in everyone. Which doesn't equal, yes everyone dies. That wouldn't be what is different...that would be what is the same. But since you think it is OK to be thoughtless than maybe next time you come on this board looking for support I will be sure to respond in kind
have a nice evening folks.
luke
and Lisa....I don't know you and couldn't care less if I "ticked you off" or not. If you would read the question no one wanted to be coddled. What she did want is an answer to the question, does CF progress differently in everyone. Which doesn't equal, yes everyone dies. That wouldn't be what is different...that would be what is the same. But since you think it is OK to be thoughtless than maybe next time you come on this board looking for support I will be sure to respond in kind
have a nice evening folks.
luke
Emily65Roses
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
My opinion is that maybe Charlotte knew the end result but wanted it stated sentively instead of bluntly. </end quote></div>
My main problem with everyone having a cow and a half is that the way Allie said it was rather sensitive. She didn't say "HEY YOU'RE KIDS GOING TO CROAK HAHAHAHAA ON YOU!" She mentioned the "end result being the same." I don't think there are much nicer ways of saying that.
Luke, as for me, I wasn't rude until you jumped down Allie's throat for no reason. She wasn't being rude. At least, I don't think so. And I know I'm not the only one. If you want rude, I'm sure we can show you rude. She was, as we all said, "truthful" and "blunt." Sometimes they can go hand in hand with rude, sometimes not. I'd say this is a "not" time.
My opinion is that maybe Charlotte knew the end result but wanted it stated sentively instead of bluntly. </end quote></div>
My main problem with everyone having a cow and a half is that the way Allie said it was rather sensitive. She didn't say "HEY YOU'RE KIDS GOING TO CROAK HAHAHAHAA ON YOU!" She mentioned the "end result being the same." I don't think there are much nicer ways of saying that.
Luke, as for me, I wasn't rude until you jumped down Allie's throat for no reason. She wasn't being rude. At least, I don't think so. And I know I'm not the only one. If you want rude, I'm sure we can show you rude. She was, as we all said, "truthful" and "blunt." Sometimes they can go hand in hand with rude, sometimes not. I'd say this is a "not" time.
Emily65Roses
New member
And d*mnit Sean!!! I was all excited to go see that website, and then it wasn't there! <img src="i/expressions/face-icon-small-wink.gif" border="0">
F
fr3ak
Guest
Lisa, yessum I am using the enter....it used to work that way LOL
Hmmmm do I gotta use the space bar, just to make my life difficult hahaha
Please tell me there's an easier way hahaha
hmmm nope spacebar did nada, *growls*
Hmmmm do I gotta use the space bar, just to make my life difficult hahaha
Please tell me there's an easier way hahaha
hmmm nope spacebar did nada, *growls*
Originally posted by: anonymous
My opinion is that maybe Charlotte knew the end result but wanted it stated sentively instead of bluntly.
My main problem with everyone having a cow and a half is that the way Allie said it was rather sensitive.
i wasn't saying that she wasn't sensitive. She was blunt. And that is fine by me and not fine by others so it was unfair to jump down her or Charlotte's throat like people were doing. Not you Emily but others. I agree with the poster that said that it is much better to debate topics not how people talk or write
Sue 24w/CF
My opinion is that maybe Charlotte knew the end result but wanted it stated sentively instead of bluntly.
My main problem with everyone having a cow and a half is that the way Allie said it was rather sensitive.
i wasn't saying that she wasn't sensitive. She was blunt. And that is fine by me and not fine by others so it was unfair to jump down her or Charlotte's throat like people were doing. Not you Emily but others. I agree with the poster that said that it is much better to debate topics not how people talk or write
Sue 24w/CF