Poverty Vs. CF

[WinAce]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Now, are you trying to tell me that what Winace is in anyway encouraging? In fact, has he ever encouraged anyone with anything, besides hoping that it all ends quickly? <hr></blockquote>

That was pretty low. Just because I take issue with your stance--the same one that would tell a cancer patient to suck it up and celebrate, instead of being there for them--is not license to insinuate the most vile things. If you dare make such accusations, do it publicly, instead of hiding behind the veil of anonymity. That's what scumbag politicians do--with attack ads funded by "concerned citizens" (who just coincidentally happen to be on their payroll)--not what decent people do.

I am in awe, though, that you read through all 226 of the messages I've posted to date and found I haven't contributed anything. That must have taken a few hours.... I don't spam every support thread with a tired cliche, yes. When I have something that I actually think will help, I'll post it. (If you're really curious--and I doubt it, as it seems you're more interested in attacking me--you can click the "see previous posts" button.) More often, I'll contact someone by private message, because <b>(1)</b> genuine support tends to get drowned out by posts like yours, and <b>(2)</b> there's this principle about trying to do something for its own sake, not to be seen and admired by men. You may even recall the guy who articulated it.

<blockquote>Quote<br><hr>And Winace, please don't bullshit us about the affects of our disease. If you're gonna list ailments that we get, please don't make up rubbish about drowing in blood.<hr></blockquote> I can attest (as someone who's had both bleeding from the lung, and nearly drowned in water once) that the sensation is eerily similar. Also,
<blockquote>Quote<br><hr> <a target=new class=ftalternatingbarlinklarge href="http://www.sportslayne.com/dads.php">CF from a father's point of view</a>
Later on, as the [lung] scaring becomes severe, the likelihood of hemoptysis increases. Hemoptysis is when blood vessels in the lungs burst. The patient starts coughing up brilliant red blood. It's a very painful and very frightening experience. It's usually treatable but in extreme cases the patient can literally drown in his or her own blood.<hr></blockquote>

Someone suggested, via PM, that those arguing CF is no big deal just haven't experienced it for themselves, or otherwise don't know much about it. I'm not a big fan of armchair-psychoanalysis, but I'm beginning to think they were right. It would certainly explain the attitude.

 

[Lilith]

No, I don't think that something like that is called for, but all WinAce tried to express with his original post in THIS thread is that people with CF *do* have it bad. Are you going to dispute a fact? Are you saying that our lives are just as good as everyone elses? Not everything is sunshine and rainbows, no matter how much we wish it was. I would think those of us with CF understand that, but apparently there are some who want to blindly think that everything is just fine and that we should never get upset or depressed, and if we do, god forbid we express it! I really do feel sorry for these people because it's going to come back to bite them in the a** if they are ever reduced to what this disease can really rob us of. And I think it's rather arrogant for those without CF themselves to tell us how we should feel about what we have to deal with. Offer advice, or a different way of looking at the situation. Don't sit there and go, "Oh, well, you're just a negative person." Better to be a little negative now and gear up for the inevitable then to pretend that everything is fine, wouldn't you agree?

 

[anonymous]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>It's not neccasery to do it on a post when someone is depressed and seeking encouragement.<hr></blockquote>

Mockingbird, are you depressed and looking for encouragement? I thought you were just trying to show that poverty can be worse than CF. Well, I encourage you. (Manhugs.)

Q

 

[anonymous]

Of course I'm not disputing life with Cystic Fibrosis is harder. I'm just saying it doesn't mean all suffering and death.

And yes, Winace, I did go through your posts. Don't try tell me you're not infamous around the board as quite easily being the most negative here.

If others had done the same, they would have understood my references to the posts regarding god and encouragement - obviously I'm not talking about this post. And Q, if you had even read the first post on this topic, you'd see Mockingbird was refering to a different topic where that quote was taken from.

Are you denying that you have a tendency to post on some topics when your opinion isn't really wanted Winace?

and btw

Hemoptysis (pronounced he-MOP-tis-is) is coughing up blood from the respiratory tract. The blood can come from the nose, mouth, throat, the airway passages leading to the lungs, or the lungs. The word "hemoptysis" comes from the Greek "haima," meaning "blood," and "ptysis," which means "a spitting".

Yes, some of the very severe cases of it can cause an oxygen deficiency which may lead to a drowning-like sensation. But then again, if what I read is correct, even menstruation can cause Hemoptysis.

CT

 

[anonymous]

WinAce you said yourself you had hemoptysis and it wasnt that bad. I've had it too, so have a lot of people on here. Just because the feeling of it feels like water doesnt mean you should equate it to drowning. And yes, if you had a hemmorage of some kind you could drown, i suppose, without treatment. But dont you think this is extreme, and dont you think then that it is UNNECESSARY for you to always talk this way about CF?

I have cepacia, I have just been told to start the transplant evaluation process, I have very low PFT's, I've had scary hemoptysis, etc. etc. etc., i've lost part of my lung already to surgery.... but I dont have your attitude, and i NEVER EVER will. There are some people who no matter what happens wont have an attitude like that. Thats the first time I have ever even LISTED my problems in the way that you seem to list problems all the time, and just seeing it written there already makes me feel like a martyr. Your attitude sucks, plain and simple. But just as plain and simple: you are totally entitled to it.

There is only so much PC crap we can take...just as WinAce can say whatever he wants, I am completely entitled to dislike it, and be TOTALLY depressed by what he says. His comments make me uneasy and sad, but, thats my problem I guess, and I can only wish that he would tone it down sometimes for my sake, but I guess thats not my place, and I should just avoid reading them.

 

[anonymous]

Hey,
It's kewl to hear you're keeping positive with your condition. I really admire that. I only hope that when my health is nearing yours I can maintain an attitude like that.

Yeah, we are all entitled to say what we want. It doesn't make it right though.

Sure, I might have been a bit hard on Winace, but no one can refute that is unneccasery to list the symptoms in places when it's not appropriate?

If someone is depressed, is it neccasery to make the person realize that it is likely to only get worse?

 

[JennifersHope]

This is going to be my last response I make on this thread because I am getting to personally involved now and it isn't good for me....I hope that none of you ever have to face the things that WInacs is facing... Before you decide to change him.. and remember I am the queen of being optimistic. and even the queen of denial about CF, so if I can be understanding then I am sure you compassionate ppl can as well.

Winase is in a horrible, horrible situation. If you have bothered to get to know him, read his website. The guy needs a transplant or he is going to die period. His stupid insurance won't pay for it, he has from what he expressed in the past have trouble with his family, (NO ONE BE AS presumptious as to say tht you know why).. he left everything he knows as his comfort and moved to a state to try to beg ppl to let him have a surgery to let him live. He is not old, he is young... He finally found a reason to live and that was in Jess....

You tell me what Lemon aide should this kid make?? Who are we to curve his right to speak his heart and mind.. I think it is a priviledge and I mean privilidge to be in relationship with ppl who are sturggling such heart ache.... I pray that not myself, or any of you have to find reasons to fix someone. I

Remember.. I don't even agree with what he writes, though I can relate to the fear or pain and suffering... I am alway positive to a fault, and yes some of it is denial and some is just because I have a faith in GOD.

BUt how come as adults we are more interested in proving that we are right then facing the reality that we have a friend who is suffering such great pain, emotinally and physically.. why would that not be the focus instead of you continually trying to prove your point.. By the way I do think you have a good point.. In fact I play a game called the happy/grateful game and when I am done we try to list things I am happy for.. I am all for positive.. but that doesn't negate we have a friend... that I am afraid we are going to lose to CF if something isn't done... do you want your last words or interactions to be telling him how he should freaken feel......

Get over your need to be right and support each other... I am newer to this board but the ppl on here are so wonderful and support me so much that I have such a great sense of peace knowing that they are here for me.. I just think everyone deserves that right.. and I can only speak for myselff. IF anyone wants to complain.. go for it.. I will validate your feelings one million percent, if anyone wants to find the positive in things GO FOR IT.. that is my style as well.. I am right there... but would you do me a favor??? Please kick me off this board if I ever become insensitive to each others needs...

Thanks,

Jennifer
33 /CF and Addisons


Funny I keep seeing other ppl sighn either hope or Jennifer 33.... and it hasn't been me.. I would love to get to meet them Hope and the other Jennifer...

 

[WinAce]

There seems to be a pattern here, of people who dislike me--for reasons independent of my posts, as I will demonstrate below--making silly comments and digging a hole for themselves.

<blockquote>Quote
<hr><i>Originally posted by: <b>Anonymous</b></i>
Is it clever to say how bad the disease is when someone is looking for encouragement?<hr></blockquote>

Somehow, I doubt you'd be this mad if someone wrote "Other people have it worse," or similar cliches.

It doesn't seem like you've even read the posts in question with any detail. The one where I allegedly encouraged someone to commit suicide (wtf?) was in a thread started by a mom writing the story of how she aborted a fetus with CF. Several people chimed in saying CF was no big thing. I happen to disagree--it IS a big thing, one of the worst out there as far as diseases go. Because many parents are unaware of this, I outlined just a few of the complications it's likely to cause, that a healthy child would be unlikely to come down with.

So, what did I do that was inappropriate? (Is this where the crickets start chirping?)

Mockingbird quoted something I wrote out-of-context and started this topic, which was about comparing CF with poverty. (Nevermind that, as used in the original thread, it was the type of poverty we're familiar with here, not the excruciatingly horrid condition of people in the Third World.) I argued with him, citing some unflattering but realistic facts about CF (and comparing them, in all fairness, to almost equally grotesque things a poor African might face, such as a guinea worm infection). Morbid, yes, but in a topic specifically comparing which is more crappy, there's no denying it belongs.

Amusingly, that was the same topic where I wrote a supportive post to another parent, suggesting they not blame themselves. Shows how long the attention span is for those who'd demonize me.

<blockquote>Quote
<hr>...Or to say god doesn't exist when someone is saying how God is the only thing that keeps them living...?<hr></blockquote>

I don't recall saying this, and ask that you support it with a relevant link. (Alternatively, you may take back this claim and apologize.)

I do remember taking issue with someone who gloated about how God made sure her transplant succeed (which sounded bizarre, even from the perspective of a believer--even if God thought her more deserving of it, than all those who died, was it really appropriate to brag about it?). I recall telling someone who thought God intentionally gave them CF to make their lives miserable, that it wasn't that. (I've seen the devastating effects of someone believing God is out to get them. Such beliefs are not your generic, benign theism, and are very destructive, because--if someone infallible thinks you deserve it--put two and two together about how your self-esteem will fare.)

Aside from my post about what CF might give a child, there were:

* Posts saying God inflicted CF on the baby.
* A post asking (and I quote) <i>"Why are you allowing yourself to get pregnant?!?"</i>
* Posts saying the mother was a murderer for aborting.

So, where are you challenging people who suggested God gave someone's child CF? (How is THAT positive, if God himself hates you that much?) Where are the self-righteous posts condemning the poster who said <b>she was a baby-killer</b>, or implying she shouldn't be allowed to reproduce?

I hope it's not simply that some people are chronic whiners, who take issue with my posts (which aren't even objectionable, in context, when you think about it) because they don't like me. My "negative attitude" exists only in people's imaginations, as is pretty clear to anyone who actually took the time to understand what I wrote.

 

[anonymous]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>And Q, if you had even read the first post on this topic, you'd see Mockingbird was refering to a different topic where that quote was taken from.<hr></blockquote>

I took it that was why he decided to start a new thread -- to narrow the discussion. He offered some stark observations about poverty. Ace countered with some stark ones about CF. How is one post more "negative" than the other?

BTW, do you know the etymology of "pedant"?

Q

 

[anonymous]

Gah. I didn't say you suggested suicide. I meant through your posts, you make death sound like a repreive from our suffering - even your old sig was a testomy to that.

And as for the comments on God - Yes, I was refering to the transplant topic. Her religious beliefs were completely harmless. You just tried to prove god was a tyrant who played dice with people's lives. She believed that she would be fine because god would protect her. What's so wrong about that?

and btw, you of all people shouldn't make comments on complaining.

This is my last post. I respect what Jennifer said, even if I disagree with some of it. This isn't doing any good. It's quite apparant you have no remorse, and will not alter your posting habits - so why am I even bothering?

 

[Lilith]

WinAce, I'd like to have a link to your site if you don't mind. I'd be interested in reading what you've got to say, and decide for myself if you are as bad of a person as the people on this forum make you out to be. I highly doubt it, however...

 

[Emily65Roses]

<a target=new class=ftalternatingbarlinklarge href="http://www.save-allan.org/
">http://www.save-allan.org/
</a>
<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

It's better to just go through his old posts....

but here it is:

<a target=new class=ftalternatingbarlinklarge href="http://www.save-allan.org/
">http://www.save-allan.org/
</a>

 

[Lilith]

Thank you!

 

[WinAce]

My old sig was from the Hitchhiker's Guide to the Galaxy (one of the funniest novels ever written, full of droll British humor). It was written in the vein of Monty Python's irreverent <i>"Always Look on the Bright Side of Life,"</i> and was specifically intended to mock those people who, like you, read too much into my posts.

I've argued that a god who'd intentionally afflict someone with CF is a tyrant (something I stand by), not that God necessarily must be. The only topic where I remember that being brought up is where someone <i>did</i> sound suicidal, because they thought God was out to get them. As I said, that belief is <b>NOT</b> at all harmless.

Given that you said that would be your last post, I take it an apology for all the slanderous false claims about me will <b>NOT</b> be forthcoming, right?

As for the website,
<a target=new class=ftalternatingbarlinklarge href="http://www.save-allan.org">http://www.save-allan.org</a> (click "my journal")

<b>Warning:</b> I do some of my *actual* complaining there. Mostly clowning around and jokes, though.

 

[JennifersHope]

Awwwwwwwwwwwwwwwwwwwwwwwww I LOVE THE NEW PICTURE OF YOU AND JESS THAT POPS UP SO FREAKEN CUTE....

THANKS FOR POSTING IT EMILY AS ALLAN...

 

[Lilith]

Okey-dokey...I've read some of WinAce's site and I just have this to say. Judging from his journal, he has every right to complain, but on the other hand, he's not the insensitve ba*tard that some of you are making him out to be. Perhaps you misunderstand his posts, and that's all there is. I write the same kind of stuff! Somewhat morbid humor mixed with some jokes...and the normal complaints? What exactly is so horrible about it? Maybe it's because I agree with his views on some things, I don't know... But I do know one thing. If that makes me just as 'bad', so be it.

 

[anonymous]

Heh. It wasn't mean as an apology at all. Winace, I don't even disagree with everything you say. You've got a place on this board - I mean, the links below are evidence of this. But if you look at some of them, you've really gotto admit that some of the comments weren't entirely neccasery...


<a target=new class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=4318&FTVAR_MSGDBTABLE=">http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=4318&FTVAR_MSGDBTABLE=</a> (Honestly, this is good advice - no sarcasm here)

<a target=new class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=4306&FTVAR_MSGDBTABLE=">http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=4306&FTVAR_MSGDBTABLE=</a> (Good advice - saying adopt instead of having own. I agree with)

<a target=new class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=4279&FTVAR_MSGDBTABLE=">http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=4279&FTVAR_MSGDBTABLE=</a> (Makes sense)

<a target=new class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=4141&FTVAR_MSGDBTABLE=">http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=4141&FTVAR_MSGDBTABLE=</a> (Stupid about our disease))

<a target=new class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=4106&FTVAR_MSGDBTABLE=&STARTPAGE=2">http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=4106&FTVAR_MSGDBTABLE=&STARTPAGE=2</a> (Some stupid stuff about religion - and what's bad is that it makes sense)...

<a target=new class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=3597&FTVAR_MSGDBTABLE=">http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=3597&FTVAR_MSGDBTABLE=</a> (You might have had good intentions with this...)

Winace, I really like listening about what you have to say. But you do hurt people with some of your comments. You just need to learn to shutup every now and then, imho.


Ok, and that really was my last post... =P

 

[anonymous]

I would just like to express that i know that CF is not a bowl of cherries and yes there are going to be times when people need support and times when this disease is worse than other times. I understand that! but i do agree with the poster that replied that Winace is not encouraging and i do not recall a time when he has been, it seems to me that nothing positive has happened in his life, excluding the fact that he met the love of his life and i am very happy for him. Maybe he should include the joy he has found in her in some of his writing on this forum. My daughter is only 9 years old and when she is 19 years old i don't think that i would want her to read any of his posts or comments on CF. We ( my daughter and I ) have met some remarkable people at clinic, older ( college ) that have given her such good advice and encouragement. I just hope that my child always stays positive, even when things are not so good, She loves being Happy even with CF

Kaitsmom<img src="i/expressions/rose.gif" border="0">

 

[anonymous]

It is not Winaces job to set a good example of CF for your daughter. it is yours. Winace is suffering. that is truth. You will do your child a big diservice by trying to protect your child from anything negative. Not that I think she should read those posts, after all they were posted in an adult forum... I think your daughter one day will be a mature loving person, and with that maturity will come an abilty to have compassion on someone who is suffering so much. If a child is raised properly, they become secure in who they are. I


Warning GOD talk don't read further if you don't want to read about it.

...I know that you are a christian because I have read your posts. I am not trying to judge you, but when your daughter is older are you going to protect her from the bible stories that talk about suffering and pain..to me as CFer it bring a lot of comfort to be able to know I am not alone in my pain I just have to add this cause Kaits mom does believe in God. Maybe you can by praying for winace and ask God to relieve his pain or do something tangible to help him get his lungs he so badly needs...

I am so glad that we are not God, because we would condem each other all right into hell because we think we know best. God is the judge of our hearts ( if you believe in GOd) and my favorite scripture is judge not lest you be judged.
And Kaits mom, in all honesty it might be easier for you because your daughter is still young, she might not have suffered to the extent that WInace has and I pray she never does, but unles you have been in the exact shoes... can't you do what you profess your faith is.??.. and that is love one another... that is the greatest commandment of your faith...Loving one another is just love... once you got that down then feel free to move on to fixing ppl...


I agree you have a point about being positive but who cares what I think, the point is we have a friend.. who no matter what is suffering... In the practice of your own faith, what did Jesus do for ppl that suffered??? did he tell them suck it up....??? be positive... OF COURSE not,, the bible which you believe in says that Jesus cries when we cry.. he laid hands on ppl who were tortured, hs heart breaks for the sick in this world... aren't we supposed to be like HIM?.

Okay sorry about the religion guys... but you were warned... I don't ever force my thoughts on anyone but I just happen to know she has some similair beliefs as me...and it bothers me to have someone say they are a christian and then make us look like butt heads but not being loving...


Jennifer 33 w CF and Addison's forgot to sign in