Living with cystic fibrosis

TCNJcystic

New member
I don't do a lot of posting at this forum or any other CF forum. Most of my time here is just spent reading the posts I think I can learn a thing or two from. I wanted to post something and maybe get an "amen" or two from the crowd if I'm lucky.

I'm not going to say anyone is wrong or any particular person has been getting me down lately because if I've learned anything, it's that everyone has their own ***** to deal with, and mine ain't any worse than anyone else's.

The meat and potatoes of what I want to say is that I hate hearing all this talk about death all the time on this forum. Cue the expected "then don't come to the big kids forum" response. My problem with this is that I am a big kid, and I've been living with cf for 20 years, and I've lost friends and a cousin to this disease. It sucks, I won't disagree with anyone on that, but I'm a full-fledged big kid who doesn't think it's even remotely necessary to dwell on the death side of things.

What the hell are we doing, though, by embracing death like belongs to the cf community alone? I've heard people write here to make it seem as if life is one decrescendo toward the inevitable death that all cfers have to endure. Death is something that everyone goes through, and it is the direction everyone's life is headed in. What I've found separates some of the death talk on this forum from the way death is viewed in non cfers, is that cfers here tend to think about it an awful lot, whereas other people don't.

I've gone through my phase of thinking about death everyday. It could be tomorrow. Who knows? I was jealous of non cfers who seemed to live like they were immortal, planning their lives to include their 50th wedding anniversary. Most of these people don't worry about the proverbial "tomorrow," and I'm asking, "Why should cfers?"

We, cfers and non cfers, simply don't get enough time on this planet to really, really understand how amazing it is to simply be alive. We take the smell of the air on a given day for granted. We don't see how amazing it is when a child laughs, or when friends sign up for the Great Strides walk behind your back. We don't often enough sit back and say, "holy *****. this life thing is absolutely unbelievable."

When it comes down to it, the life of anyone, cfer or non, shouldn't be spent worrying about death or even about trying to make that April 15th deadline, it should be spent as happily as it possibly can be, in celebration of life rather than fear of death.

The argument that cfers get the "license" to have a morbid sense of humor is alright by me, I guess. It's not an attitude I'd like to adopt, and I think it's a waste of time to adopt it when there is so much more positive in this lifetime to think about than the tragedy of this disease.

Again, I know I've probably gotten to some people, and I really really really completely genuinely don't mean to offend anyone. I know you have your own ***** to deal with, and your attitudes are a result of your lives, which I can never understand. I completely respect and understand that, and any argument to my character is just going to be responded to with a copy of this paragraph. It's as sincere as anyone has ever been.

I'll close with a line from RENT, which I think describes this whole idea pretty accurately:
"To people living with, living with, living with...not dying from disease."
 

Allie

New member
Bill, would you just lock this thread now and get it over with?

Here's the thing, we've run in circles over and over again. No one is going to change. Can we all just coexist and stop telling each other how to be? That's what I really want. Just for everyone to stop trying to police each other.

I;m not offended, I realize you and I see life differently, and that's fine. But I'm not going to change my life view, and neither are you, Mazel tov to both of us.

I just know this is all going to turn into one big fight, and that to me is more negative than talking about death, is animosity.
 

thelizardqueen

New member
I want this thread locked. I'm tired of getting into arguements, because you know this one will spark another biggie. I'm tired of people telling each other how to feel. That's fine that you feel that way, and its fine that others feel a different way, but don't tell us how to feel. We can't control what we think about or feel about whether its negative or not. Everyone in entitled to their own feelings, and everyone is entitled to tell each other how we feel, but again don't tell us how we should be thinking. End of comment.
 

Jem

New member
Hi Steve--

For a young man you seem wise beyond your years. 16 years ago while pregnant with my third child I had a frank discussion with my doctor about my health. When the conversation was over I felt like I should just dig my grave now and jump in. His outlook on my future was very depressing. But then my husband and I looked at the two children we had and knowing there was a third on the way made the conscience decision to live life the best we could and value the time we had together and the great blessings of our children. I'm 47 now and although I have one lung my PFT's are 45. The last time I had a tune up was 7 years ago just before they took out the rest of my left lung due to massive bouts of hemaptysis. I have CF but I also have a wonderful husband (we just celebrated our 25th wedding anniversary), three great kids, a multitude of extended family and friends. I'm a wife, a mom, a daughter, a sister, I've been a Girl Scout Leader, president of the PTA, as well as involved in various church and local charities. My life is full and I do not think about dying because today is all any of us have and I will not waste today on what might happen tomorrow or the next day. I have had friends and family pass away at a younger age than I am now from various cancers, heart attacks, a car accident, and yes --also in the World Trade Center on 911. We all have to accept the fact that we are going to die. No one escapes it. Having CF just helped me accept it at a much younger age and I feel it has made me make good choices in my life along the way because I knew that I wanted my time here on earth to be worthy of this great gift of life. So to you Steve I say "AMEN!" And may you always cherish the present as a present and make the most of it. <img src="i/expressions/heart.gif" border="0">
 

julie

New member
Steve I agree with what you are saying. I don't have a problem with the occasional morbid humor or comment, but it does seem that more and more on this forum the focus turns do death and dying and disecting those two things. and it's just frustrating. Neither I, nor my husband can understand why the focus lies so strongly there lately. It hasn't always been that way. It's definately healthy to discuss it on occasion, I think those who avoid facing it at least once are just fooling themselves. But I don't think it's any prize to dwell on in the least. Address and deal with the difficulties of it, and then move on with the joys of life.

There are those who can't do that, and it is their own burden. And there are others who can, but even they aren't free of burdens. To each his own I suppose.

And I'm not sure I understand the problem with what Steve wrote???? He expressed his feelings, his frustrations with some of the commentary on the board lately. I don't see him telling anyone how to feel. I feel how I do, steve feels how he does, joe schmoe feels a different way.... But there is no harm in him, or anyone else expressing those feelings. And just because someone makes a suggestion that doesn't agree with your opinion, doens't mean they are telling you how to feel. It's just a suggestion, take it or leave it. I think the foot needs to come down though when people are being personally attacked and the name calling begins. I don't see any of that here and don't really understand why anyone wants it locked.

By you asking bill to lock this thread, you are prohibiting others from sharing their feelings and views as well. And as long as there is no mud slinging going on, no name calling and downright nasty personal attacks, I really don't understand why we can't all have a healthy opinion. Even if it is on a controversial subject. If we are all the adults we claim we are, then we should be able to deal just fine.

If it's such a problem, maybe it's a good idea to just not come back for anymore reading on this particular topic.

BTW, very eloquently put Steve.
 

Allie

New member
It's not that I have a problem with Steve's opinion, I don't. It's his right. But I don't wish to be told what my rights to express nd not express are, aand I don't wish to be told how to feel and speak.

I want this locked, because I don't want more fighitng and animosity on the board...and no one changes, so why start it? Really, can't we all accept each other as we are? Let's just let each other be each other....Steve can be Steve, Julie can be Julie, Allie can be Allie....
 

Faust

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

I don't see him telling anyone how to feel. I feel how I do, steve feels how he does, joe schmoe feels a different way.... But there is no harm in him, or anyone else expressing those feelings. And just because someone makes a suggestion that doesn't agree with your opinion, doens't mean they are telling you how to feel. It's just a suggestion, take it or leave it. I think the foot needs to come down though when people are being personally attacked and the name calling begins. I don't see any of that here and don't really understand why anyone wants it locked.



By you asking bill to lock this thread, you are prohibiting others from sharing their feelings and views as well. And as long as there is no mud slinging going on, no name calling and downright nasty personal attacks, I really don't understand why we can't all have a healthy opinion. Even if it is on a controversial subject. If we are all the adults we claim we are, then we should be able to deal just fine.

</end quote></div>


<a target=_blank class=ftalternatingbarlinklarge href="http://dictionary.reference.com/search?q=Irony
">http://dictionary.reference.com/search?q=Irony
</a>

And the main idea of this post:


<a target=_blank class=ftalternatingbarlinklarge href="http://dictionary.reference.com/search?r=2&q=hypocrisy
">http://dictionary.reference.com/search?r=2&q=hypocrisy
</a>

I think such a powerful representation of those two definitions, especially the second one, in one post, has just opened a rift in space and time where my monitor used to sit. Quick question julie, and I personally don't have any feelings towards Steves post, I just don't care. But do you not see what would warrant me to say this, when you are voicing such an opinion in this thread, with the doozy you posted just not too long ago? Come on now. What did you score on the ASFAB?
 

anonymous

New member
Jem, thank you so much for your kind words. I think we can all agree we've had times when we've been down, but I really appreciate you sharing your inspiring story with us. I actually feel a little better when I see a cfer turn around like that and live for the day.

Julie, thanks for understanding the positive/non confrontational nature of my original post. I agree that as long as this topic stays positive in nature, and more people like Jem can share their stories of life with us, then there is no reason this thread should stay locked.

I'm not one for arguing.
 

julie

New member
Where has he told anyone what rights are to be expressed and what rights aren't? Where is he telling anyone how to feel or speak? He's just sharing HIS opinion of what's going on, what's been said/written.

I think the only fighting that is going to happen on this board is when people start telling him he has no right to express his feelings. I don't know if you see it Allie but you are telling HIM to do or not to do exactly what you say you have a problem with-telling others how to feel and behave.

I don't see the harm in letting this continue into a healthy discussion and see where it goes. I (PERSONALLY) don't think there is any need to lock a thread because you don't agree with what is being discussed. There is a report to moderator button for offensive comments, profanity, grossly inappropriate discussions and whatever else Bill has designed it for (Bill, maybe you can specify for us since we all have a different opinion as to why/when it's appropriate to use) but I don't believe the purpose of it is because you don't like the topic.
 

Allie

New member
<b>I;m not offended, I realize you and I see life differently, and that's fine. But I'm not going to change my life view, and neither are you, Mazel tov to both of us.

I just know this is all going to turn into one big fight, and that to me is more negative than talking about death, is animosity. </b>

THis was the whoel point of what I stated, I'm not offended, I'm just sick of all the fighting...can't we all just get along? *sigh*
 

anonymous

New member
Now that is something that could eventually lead to the thread being locked. How inappropriate is that comment? I don't have time enough to get into the reasons why it can offend others, but those that have enough sense can see why you were inappropriate with that comment.

We are all here for one reason, to support one another, not to knock each other down. I for one agree with living today for today and enjoying every moment I have with my son (who has CF). He deserves this as much as I. Death, yea it will come, but will come with myself and my son knowing that we loved each other and enjoyed each other every day we had together. Bottom line.

Mom to 3 1/2 yr old w/cf
 

anonymous

New member
When I speak of being inappropriate, I speak of the "down syndrome" comment, not yours Allie.

Mom to 3 1/2 yr old with CF
 

julie

New member
Janet,

I loved what you shared with us. Reminds me that when I have a bad day, there is still so much to look forward to. Why not live life like that. I don't have CF, so maybe it's different for me, although maybe not. But I really liked what you wrote. Thanks for sharing.
 

Faust

New member
Considering I have taught kickball to downs patients, but just haven't had the opportunity or ability to teach them hockey, that is inappropriate how? That aside, and my feelings how I don't understand how some peoples views can change weekly, there really is no point in commenting further. For future reference, if I say I am going to go take some abused kids to the mall, it is *OK* because I used to take care of abused kids. Just so you guys know k?
 

Ender

New member
I think we just all need to get drunk together, have our outs, and then kiss, make up, and get even drunker.

Anyone up for it?

Kiel
 

Faust

New member
I'm fine with getting drunk with you Ender. But some others, well...I'd atleast have to poop in their gas tank in the parking lot or something.
 
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