Are cf people doomed?

[Ender]

I was talking to my friend, and she said that in all her textbooks, (health phsycology) they make cf seem so depressing and she said "like everything i read in a description makes it seem like people with cf are doomed....but i feel like thats not true...am i wrong"

I said, na, we're not doomed, it just takes a lot of work...hehe

What do you guys think? You ever look at cf as a death sentence at times, and feel a little hopeless. If you do, do you think that with harder determination, (ie more exercise, more nebs) that you can pretty much lead a normal existence.

In other words, do you think that you do all that you can do to stay your best, and do you ever get down on yourselves sometimes when you aren't as vigilant?

I sometimes feel myself smothered in this disease...and i feel like it's supressing me at times. I just get too caught up in it, it becomes consuming, and i lose site of what's really important in life. Anyone else ever get into this train of thought, and were you able to get out?

Ok totally random. It just came to mind.

 

[anonymous]

Here we go again...hold on everyone...it's going to be a bumpy ride!<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[thelizardqueen]

To be honest - I don't see myself "Suffering" with CF. So many people say they "suffer" with CF, and I don't see it that way at all. I'm 25 years old and still have mild CF. I've had only a handful of hospitalizations, and nothing major in my life (health wise) has happened. I honestly think - for myself anyway - that with some hard work - I will live a longish life. CF isn't all doom and gloom. Sure CF is sucky and we will all die prematuraly from it, but whatever - I'm used to CF. "Suffering" to me conjures up images of pain, etc - and CF hasn't really caused me pain. Sure all my treatments and stuff suck a**, but life goes on, I carry on. Its a part of me, it doesn't make me.

I don't see it as a death sentence, because here I am - 25 years old and still for the most part healthy, with no really major problems. I know this isn't the case for all CFers - after all, we're all different when it comes to our health, but I could have easily gotten cancer, or had some other genetic disease. Sure I feel helpless sometimes when I'm sick, because I think 'grief - here we go again', but I also think - I'm used to this - just another bump in the road.

The only thing I don't like about CF is the whole time line aspect. Like I need to crame everything into such a short time. Or sometimes I wonder if I should be doing something more spectacular because I have such a short life to live. Like am I doing enough (not health wise, but in my personal life)? Should I live life more on the edge instead of planning all the time?

That being said, I'm sure I'll change my way of thinking, when I won't be able to walk up a flight of stairs without gasping for air, or I'll have to make the decision of whether or not I want a lung transplant. But at this stage in my life, I'm not really overtly worried yet. Why worry over something that hasn't happened yet, and might not happen for awhile? If I did - then I'd be worrying my whole life away - and that's a sucky way to live.

 

[onlyoneloveinmylife]

i don't think us CFers are doomed. i just tell myself, everyone has
to die sometime. our time may just be sooner is all. CF may take
our body but it can never take a our spirit.

 

[Scarlett81]

I don't really see myself as suffering either. Sure I'm healthy now, but I've had some very hard times with my Cf looking back. But I view suffering as more of a mental state of mind. I think I've suffered more mentally/emotionally from Cf related thing and non-cf related things. Any real suffering in my life is attributed to non-Cf issues.

No I don't view myself as doomed at all. I also think that is a state of mind. And its been proven that the mind set is powerful enough to affect an outcome, right? I have the power to do what I want with my life. I have days where my Cf controls me, but I don't think thats the same thing.

So-no I'm not doomed. But I don't believe in "fate" either......but that's a whole nother story!<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[onlyoneloveinmylife]

i agree with liz. i thought that way too at 25, now i'm 29, my lung
function has dropped a bit to the low 30s. but for the most part my
outlook is the same, the only thing different is it is harder to do
things now.

 

[Lilith]

Well, technically if you think about it life is a death sentence.
 We're all going to die eventually.  But it does feel
like a penalty, since there is probably more than a 50% chance you
know how you're going to die, and you can pinpoint when moreso than
a normal person.<br>
<br>
Yeah, I get down on myself when I'm not vigilant, and I usually pay
for it in the end.  As far as getting smothered and lost in
morbid thought, yup, I've done that too.  But I'm a goth, so
most of what I think of is morbid <img src="i/expressions/face-icon-small-tongue.gif" border="0">  Seriously, though, I
always manage to kick myself out of it.  I go through stages;
depression, anger, and then going back to my saucy, trash-talking
self.  Gives me sort of an adrenaline rush to get myself back
in gear.  Call it a re-fueling for my fervor.  I go
through that a lot, actually, to varying degrees...<br>
<br>
Anyway, I hope I answered your question <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[chipper28]

Grumble.. Grumble..

That was my sound this morning. I impressively broke my arm two years ago, so I've got an almost six inch plate in my arm that my body isn't fond of, so the surgeon is going to take it out this weekend. Thus, I was at the surgery center this morning doing pre-op. The last time I had a surgery, the anaesthesiologist gave me a drug that I'd told him I was allergic to and I did the ol' anaphylaxis number, so I had two anaesthesiologists come to my pre-op appointment instead of the one nurse.

My CF diagnosis is new (less than three months), but I'd identify my health with CF to be identical to my health back in May. Therefore, it makes no sense for these guys to basically argue with me that I shouldn't have the plate out and should really just wear a splint for the rest of my life rather than having a couple of hours of anaesthesia!!! Absurd! And this is in the medical field. I wish there was some understanding that CF is very individual and you can't just paint one broad picture.

I honestly was thinking this morning that withholding info on the cf diagnosis and going with the vague, nebulous statemetns of "asthma, rad, bronchitis, something like that", but I'm normally of the opinion that it should be a good thing to give docs more info.

Oh well, just whining!

 

[julie]

I don't have CF so I'm going to weigh in with a different perspective here.

I am having a hard time making this come out in words how I am thinking about it in my head, so here goes my attempt. I would never wish CF on myself or on anyone else, but Mark and I were talking the other night and both agreed that in a somewhat strange way, at least those with CF KNOW they will die younger, and that gives some the incentive to live life to the fullest. Do things that the rest of us might not do, live a bit recklessly in order to LIVE life. Quality of life over Quantity of years.


It's kind of like that country song (don't know the name or all the correct lyrics) "I'd go sky diving, I'd go rocky mountain climing, I'd go 2.7 seconds on a bull named ______, and I'd love deeper and I'd ______ sweeter and I'd give forgiveness I'd been denying.... I hope someday you get the chance to live like you were dying.

Not sure if that makes sense, but that's how Mark tries to live his life, and I do what I can to try and see that it happens.

 

[lightNlife]

<span style=
" font-family: Verdana; font-size: x-small;">Incidentally, the song
is "Live Like you Were Dying" by Tim McGraw.
<img src=""><br>
<br>
My attitude about whether CF is a death sentence or just a crappy
daily struggle changes like shifting sand. Depending on what wave
I'm experiencing at the moment or season, my opinion changes. Some
days I find myself in particularly depressive moods because it
seems like no matter how hard I work at being healthy, my body has
other plans. Other days come that are exceptionally encouraging and
give me hope that each day that I'm well enough to fight, then
fight I will.<br>
<br>
I can't think of a time since becoming aware of having CF that I've
been able to forget I have it--even as much as I'd like to. Every
enzyme I take reminds me I have it. Every enzyme I foolishly
"forget" to take reminds me.<br>
<br>
My general feeling at this point, based on my own experiences and
from what my parents have shared with me, is that CF can and will
kill me. This is a sobering reality to face, but for me it's not a
fearful one. My personal convictions and faith enable me to hold
firmly to the belief that my only comfort in life and death is that
I with body and soul, both in life and death, am not my own, but
belong unto my faithful Savior.<span style=
" font-size: x-small;"><br>
<br>
<span style=" font-size: x-small; font-family: Verdana;">Is
CF a death sentence? In some ways yes. But for me it has no bearing
on what I place my hope in what awaits me after death; namely,
eternal life.<br>
<br>

 

[onlyoneloveinmylife]

well done lightNlife, I also believe we will be rewarded for our
pain and suffering on earth with eternal life with our Savior. the
key i think is to live life like it's your last day, because no one
is guaranteed A tomorrow.

 

[Ender]

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

Here we go again...hold on everyone...it's going to be a bumpy ride!<img src="i/expressions/face-icon-small-confused.gif" border="0"></end quote></div>

I had no idea what you were talking about, and then i read some of that huge thread. Sweet jesus. hehehhehe, i should have read that first. It's all explained <img src="i/expressions/face-icon-small-tongue.gif" border="0">

 

[mousesmom]

Dont ever believe that CF has more control of your life than you do. This is what monique likes to say.

 

[Diane]

Where do i start? EVERY person in life is doomed . EVERYONE is dieing from the moment they are born. I used to think of cf as a death sentence, till i started getting older and seeing perfectly healthy people die for all sorts of reasons. Look at 9-11, chances are the healthy ones thought they had the rest of their lives to live, not knowing they wouldn't even make it to lunchtime...... Then theres an old friend of mine who's husband set the house on fire with her and the kids in it. ( she died , the kids survived)...... Theres also my ex boyfriend who was stabbed to death. A kid down the street who was hit by a car riding his bike...... a little 10 year old girl hit by a bus ...... a 12 year old boy who climbed up a pole by the traintracks and was electrocuted......my neighbor's son who died of cancer at 31. It isnt just people with illness's that are doomed. We just have an idea of what might take us. Although most do....not everyone with cf dies of cf .

 

[Dustin82]

my oppionion is u cant think about when u are goin to die u have to thinkin about what u are goin to do tommrow and be happy with the cards u got because u cant get a re deal on ur life what u got is what u got just be happy u have a chances to see the sun everyday and see the stars at night. My parents always told me there is always someone worse off then u are so just be happy with what u got!!!!!!!!!!!!


Dustin
24 CFRD Male
Missouri

 

[anonymous]

We cfers are doomed only if we put our faith into someone (or something) other than ourselves. It is nice to think that there is an eternal life after death but all of that is just an idea. What if that idea is not reality. Take care of yourself and be happy with what you have instead of wishing for what you don't have.

 

[Chaggie]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i> We cfers are
doomed only if we put our faith into someone (or something) other
than ourselves. It is nice to think that there is an eternal life
after death but all of that is just an idea. What if that idea is
not reality. Take care of yourself and be happy with what you have
instead of wishing for what you don't have.</end quote></div><br>
<br>
Couldn't have said it better myself.

 

[anonymous]

Doomed?! Well you're certainly going to be doomed if you went around with that attitude! Like Diane(?) said everyone in life is 'doomed', we're all going to die! Life is what you make it!

 

[JazzysMom]

IMHO I think it depends on what you consider doomed. If you mean we know what the outcome is then that applies to everyone that is ever born. If you mean the timing of our death then that varies. If you mean the lack of living instead of existing while alive then that varies. I know many people that are doomed tht dont have a chronic illness! That being said I dont consider myself doomed. Some days are more of a challenge & I dont look forward to the progression, but doomed is not an accurate term for ME!

 

[littledebbie]

This just sooo depends on what you mean?  Doomed to die from
CF...yes.   Doomed to die too young...yes.  Doomed
to a miserable existence...no.  <br>
<br>
Truly when people ask me things like your friend did I usually
say..yep <img src="i/expressions/face-icon-small-smile.gif" border="0">  Because I usually interpret that as ...."is
there any life saving treatment, any loop hole you could fall into
thus changing your fate, any chance you won't have to die from this
disease"...and so I usually tell them...yep we're doomed,
we're dying young but doing it with a lot of style and wit.<br>
<br>