Poverty Vs. CF

[Mockingbird]

<blockquote>Quote<br><hr><i>Originally posted by: <b>WinAce</b></i><br>As an aside, comparing a disease which robs your very breath, gives you diabetes, haunts you throughout childhood (only becoming worse through adolescence and adulthood, when you should be enjoying yourself the most) and ultimately kills you to poverty is just plain condescending. CF is about as wicked as they come, so let's not pretend it's just a walk in the park or mundane "challenge." <hr></blockquote>

Did you get your pride hurt? I'm sorry. You know I once saw a man begging for money? He didn't have any hands, and he was banging his head against the pavement ground in an effort to induce sympathy. I saw another man, he cried out of gratitude when he recieved half an ear of corn. Children rooting through garbage cans because they don't have enough to eat. Do you even know what poverty is? I don't know what poverty is, because i've always had enough to eat, and a roof over my head. i've never had to live my life begging in the streets, looked upon with disdain by all who passed.

Sorry to break it to you, but just because you have cepacia and need a lung transplant, you don't have the worst life in the world. The POINT I was trying to make, is we all have thngs like this in our lives. For anyone to say they have life worse than anyone else is arrogant and stupid. To tell the truth, I really get sick of you saying how absolutely terrible CF is all the time. is it so hard to admit it isn't all that bad? Or is it a pride issue, you just don't want anyone to think you've had to survive anything less than hell itself.

Whatever, the only reason you irked me this time is calling poverty some mundane challenge, so insignificant when compared to your suffering. Give people some consideration next time. They don't deserve to be stomped on just because you think you have it worse. <img src="i/expressions/brokenheart.gif" border="0">

 

[WinAce]

Care for a lighter to set that strawman on fire with, Mockingbird? I never mentioned <i>myself</i>. So far, I've managed to avoid a lot of the things I've seen happen to friends. Debilitating things. Scary things that make <i>Night of the Living Dead</i> and <i>Alien</i> look like a Barney song. Drowning (literally) in your own blood, having constant agonizing pain so bad you couldn't move, being unable to eat on your own. Having your breathing literally corked by infected phlegm, and developing such a degree of osteoporosis that chest PT or the Vest shatters ribs. Before slowly and agonizingly attaching you to a ventilator and killing you while family and friends watch.

Yes, compared to that, almost any poverty you could name is a walk in the park. It'd take a guinea worm infestation in Sub-Saharan Africa to even <i>begin</i> to compare with some of what this illness brings. Compared to a lifetime of CF, even several years of homelessness wouldn't be that horrible. It would certainly be a challenge, but it's like seriously comparing a broken leg to paraplegia! And unlike CF, despite being something I wouldn't wish on my worst enemies, even extreme poverty is at least a curable, often temporary condition. It need not haunt you until the day you die (although it can).

So you may want to get off your high horse for a moment, and consider that yes, CF is one of the worst conditions humanity will <i>ever</i> have to deal with. It has not a single redeeming aspect, and is a vile, disgusting disease which will, when finally defeated, only prompt shouts of <i>"Ding dong, the b itch is dead!"</i> No one will mourn it, and they most certainly won't be saying <i>"come now, it was no big deal."</i>

LIFE is good, even through challenges like CF. To claim, on that basis, that CF <u>itself</u> isn't all that bad, is irrational, dangerous and stupid. (Dangerous, because it downplays the problem and potentially helps others ignore that the illness must be hunted down and mercilessly destroyed, not celebrated.)

 

[Mockingbird]

<blockquote>Quote<br><hr><i>Originally posted by: <b>WinAce</b></i><br>So you may want to get off your high horse for a moment, and consider that yes, CF is one of the worst conditions humanity will <i>ever</i> have to deal with. <hr></blockquote>

Is it? Well, if it makes you happy to think that... I guess it would be sort of a crime to disillusion you after you've obviously worked so hard. Be sure to keep your eyes closed.

 

[pedalup]

When i say whoa, i mean whoA........................... I JUST READ THIS POST AND THIS IS SOME DEEP S***!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

[Lilith]

I will agree with WinAce that this disease is BAD...but then again, if it wasn't CF for us, it would be something else. In life, SOMETHING always has to get f***ed up...that's just the way it goes. If we weren't facing CF, we'd be facing something else and thinking that IT was the most horrible thing. After all, everyone likes to bi*** about their situation at some point. It's just human nature. Everyone (or at least the majority of people) think they have it worse than everyone else. Personally, I'd rather have CF than have to deal with anything else. I've learned to handle it to the best of my ability, and if the time ever comes (and it inevitably will) that I'm choking on my own phlem and on a ventilator, then I'll pump up the morophine and be satisfied that I had a good life while it lasted.

 

[anonymous]

I agree with Lilith and Mockingbird. No matter what comes the attitude that WinAce has doesn't help anything. If it isn't one thing it is another. and saying that something is one of the worst things in the world? ("Napoleon, as if anyone could even know that").

I think when we start trying to compare greivances and whose pain is more painful, it causes trouble.

I am not, however, trying to be all fair and square here... the quote that Mockingbird cut and pasted from WinAce really irked me too.

Life CAN be a walk in the park, if you chose to make it so. CF is a disease, and if we didnt have diseases and bad things none of us would ever learn anything. Am I crazy or aren't these life lessons that many of us have learned early on? I mean come on, it is the oldest story in the book-- IT MAKES YOU STRONGER, and a better person! And when you die, its not like something is happening to you that isn't going to happen to everyone else! OPEN YOUR EYES WINACE, and stop complaining.

 

[WinAce]

Regardless of how you try to quantify "badness," CF is going to come out on top (or very close to it).

(1) It affects all aspects of life. Money, diet, school, jobs, vacation, dating, you name it, you probably can't do it without being extra careful.
(2) It requires incessant, tedious, often very painful and otherwise annoying treatments to even manage (read: keep under enough control that life is tolerable, and you don't immediately die). Chest PT, nebs, pills, IV drugs, hospitalizations, G-tubes, mediports...
(3) It leads to a variety of very, very nasty complications that would be powerful bitching material in and of themselves: Arthritis sucks. Diabetes sucks. Osteoporosis sucks. Cor pulmonale sucks. Liver failure sucks. Tobramycin-induced deafness sucks. Etc. etc. etc.
(4) It affects people from childhood onwards (one of the things that make it truly insidious). And with far too few exceptions it can only go downhill.
(5) It's incurable. Cancer can kill you, but it can also be wiped from your body. The poor man can pull himself out of even the nastiest situation with cleverness and luck. Short of an act of the gods, though, CF will be with you until a real-life cure is invented (so don't bet on ever getting rid of it).

I can think of only a few things I'd rather not have equally, or more. Tay Sachs is one of the rare problems that I'd call even more insidious, and then, in some ways, it still isn't as bad (it will probably kill you physically before it can eat away at you mentally).

It's funny, also, how the vast majority of the population that <i>doesn't</i> face a chronic, unrelenting illness learn anything or are resilient enough to deal with major setbacks, if CF is so good for that. If you didn't know better, you'd almost think those "life lessons" CF is supposed to bring you are nonsense, and people deserve more credit. It's pretty obvious that CF does no such thing, in reality; it merely provides a filtering effect. Those that are strong by themselves are predisposed to surviving longer, whereas those that are weaker wind up depressed, potentially stop taking their meds, and die quickly, leaving only the other group visible. Presto, "CF made those people stronger!"

I'll admit that I'd rather have CF than, say, see a loved one tortured by some warlord, but that isn't saying much. It's more an argument against sociopathic warlords, than an argument for CF not being so bad. It amazes me more with each passing day how people can have such a rose-colored view of the world without popping and leaving magic lemon faery scent everywhere. That's the only label appropriate for those who'd insist CF is no big deal, and would call others matter-of-factly pointing out that it is "complaining."

This is a board comprised mostly of those with the disease, so it's safe to take off the "oh, it's no big deal" armor we all put on from time to time to "outsiders." Seriously. You won't get all your unwanted leg hair removed by a lightning bolt just for admitting CF is bad.

 

[Mockingbird]

Don't forget to add the drowning in your own blood thing to your list, too. And the constant agonizing pain. Or i guess those would fit under number three? I wouldn't want you to leave anything out. It's funny; of all the people i've known with CF (and there have been a lot, what with me going to CF camp and with my hospital stays at PCMC is Salt Lake City and all) i haven't known one person with conditions as serious as you say so many of your friends have been through. Now i have known severe cases of CF, but never anyone with broken ribs from CPT, or being unable to eat on their own, or any of the others. not even in their last stages. I just think it's kind of weird you would have seen all that, and yet i haven't even seen one, nor, for that matter, has anyone else mentioned anything about that. Strange, eh?

By the way, i'm curious exactly how a poor man would be able to pull himself out of his situation with cleverness and luck. Especially if say, he happened to be in a third world country, where there wasn't anything for him to pull himself up too. Ah, but of course poor people must all be lazy, right? Now where have I heard that before? It was somewhere.... Oh yeah! Rich people like to say stuff like that. you know, people who were born with silver spoons in their mouths. A lot of european royalty had that sort of attitude as well if i'm not mistaken. you know, tyrants, mostly.

And i happen to know a few people who have survived cancer. Yeah, I guess that chemotherapy is something awful. Of course, I'm sure it doesn't even compare to the effects of TOBI. I mean temporary hearing loss; that's really huge. And as for the so very few people who die from cancer, well there I've seen severe cases such as people not being able to feed themselves, having so much pain they have to be on constant morphine. I kinda always thought that seemed to much worse than dying with CF. I guess i don't know anything. oh, well.

Oh, and by the way, if you still want to trade places with someone homeless, I'm sure that guy I was talking about is still in front of the train station in Guang Zho (or Canton, if you prefer) Unless he's completely bashed his brains out by now, of course. If nothing else, i'm sure he'd love to know how he'd be able to pull himself up with that bit of cleverness you were talking about. There's also a few people in Kueng Ming I didn't mention. Maybe you could just write your devine wisdom on a sheet of paper, and i could get it translated for them. i'd have to track these people down of course, but at least I'd finally be able to help them. Oh, and I have a friend who did a mission in Africa for a short time. She still has people she keeps in contact with so it would be easy for here to just send it over there. Please, please don't keep this wisdom of yours to yourself. i've never been able to forget those people, and I really would do anything. It's something that's important to me, anyway.

 

[anonymous]

Mockingbird has a stick up his a**.

Each one of us has a right to complain. Whether if we do or not is our privlage. At times, we each have a right to claim that there is no greater pain or suffering than our pain (everyone has that right). Life is suffering. Not in a bleak way, but in a matter of fact way. If Mockingbird can't loosen his belt strap a notch to digest a little relative compassion, how can we be sure he is able to be compassionate for the handless man on the street banging his head on the ground asking for assistance. If you cut off one man's finger and another man's hand, who is to say one is to endure greater pain. To each, the pain of the event is consuming in the event. Pain is pain. If Mockingbird hasn't figured this out yet, he is the one we should all pitty.

Mockingbird thinks WinAce is arrogant in his claims of suffering, when in fact Mockingbird is the arrogant one in his attempts to diminish anothers experience.

Mockingbird please... enough with the petty attitude. Thank you.

 

[anonymous]

Mockingbird you are just above us all aren't you? Thank you for gracing us with your boundless wisdom and easy temperment. You have taught us all something here. Thank you.

 

[kybert]

mockingbird its not up to you to decide how bad winace has it or anyone else for that matter. if you find cf to be easier than what people describe, good for you. lets hope it stays that way for a while. but how dare you belittle people who are going through worse. by the way, my brother was one of those extremely sickly people winace mentions. you may as well go spit on his bloody grave.

 

[Mockingbird]

Pain is pain... WHICH WAS THE POINT I WAS TRYING TO MAKE IN THE FIRST PLACE! Sheesh. if you're going to attack me, then at least read my posts first. And then Read WinAce's post, why don't you, and then you can realize your argument was the exact opposite of what he was saying, that CF is the worst pain in the world and that nothing else compares to it.

And please forgive me for not showing any compassion to WinAce; i guess I figured he was already making enough of his own.

 

[Mockingbird]

<blockquote>Quote<br><hr><i>Originally posted by: <b>kybert</b></i><br> by the way, my brother was one of those extremely sickly people winace mentions. you may as well go spit on his bloody grave.<hr></blockquote>

Yeah, i think i won't since that's not what i was trying to do in the first place. I'm sorry for your brother, i really am.

 

[JazzysMom]

I am suppose to be getting ready for my friends wedding right now, but I couldnt not respond. I dont know what type of person I would be without CF. If we go by my enviromental influence I would be caring & devoted. If we go by genetics (barring CF itself) I would be stubborn & argumentative. Does my CF reinforce these qualities I already think I would posess. ABSOLUTELY. If someone doesnt have these qualities of some degree I dont think CF would all of a sudden make them stronger in anyway. In that aspect of life I think you have the weaker & the stronger with or without illnesses. You have people that "appear" to have it all like no serious healthy problems, enough $$$ to be comfortable, a loving family etc yet they blow their brains out. We have had that a lot recently near us. The "reasons" seem to be ridiculous to us, but those people it must have been a torture. What I think illness in general (not for everyone please note) does is offer an easier going view of the everyday things. Since many of us work very hard at maintaining our health level just to enjoy another day, I think that we dont worry about the little things because we deal with bigger things on a regular basis. Yes there is an acception to everything I am thinking, but I am talking in general. So we might not become "stronger" because of CF, but we normally "appreciate" life or what we have more. I say it like that because what everyone appreciates, needs or wants to "live" is different. I hope my thoughts have come thru a little clearer on this post then how it seems in my head. Everyone have a good day!

 

[ClashPunk82]

I agree with Mockingbird. There are so many people suffering in the world and to say CF is the worst just isn't right. I would rather have CF than be a poverty stricken person in South Africa dying of AIDS. Yes CF blows sometimes but it has made me who I am and I have met so many wonderful people throughout my life. I had to grow up fast but I am glad I did because as I grew up I knew what was right and what was wrong and I didn't have to go through the rebellious teen years to find myself. I have known who I am for a long time and I am proud of who I am and what I have become. And Winace I know it must be hard for you but comparing CF to Tay Sachs is cruel. Tay Sachs is by far worse than CF. I can't even imagine what that must feel like. The child knows nothing but pain until they die what around their 5th birthday. There are so many other horrible things out there and if I had to be stricken with any of them then CF doesn't seem that bad.

 

[NoDayButToday]

It's life. There are bad things in everyone's lives. I personally would say that CF is on the worse end of that spectrum, but if Mockingbird, you don't agree, then you are very lucky.

However, life isn't a competition. I certainly am not going to be sitting on my death bed (hopefully decades from now) and thinking "Well at least I wasn't poor on the streets" or "At least it wasn't Tay Sachs that killed me" or "At least I'm not an AIDS orphan." I don't think many people think thoughts like that while they reflect back on their lives. I'll probably be thinking "What a ride."

 

[anonymous]

all i know is that WinAce's posts make me depressed. the detail that he goes into about these horrible problems that people with CF has are just disturbing, but the thing is, it is not because he is writing about how wonderful these people are, or even writing for thier sake. Instead he is just writing in the most gruesome detail about thier problems in order to make HIS point, and its disturbing. I know if I had any of those problems with my CF i wouldnt want someone writing about me in that way on a board, and using me as an example of one of the "worst things in life" or something.

However, he totally has a right to his opinion, but I can honestly say that after reading his post about the blood and the ventilator, I couldnt sleep last night. It freaks me out, and I have CF pretty bad...actually, i pretty much have the same cf characteristics as winace, but NOT the outlook on life.

Whatever, it is just my opinion that his dramatic descriptions and detail do nothing to help anyone.

 

[TCNJcystic]

I just read this whole thread and I can't even believe it's happening.

I swear this happens every time I try to join a CF discussion group. I spend a few weeks here and then realize that everyone has too much "I know a lot of sh*t because I've been through a lot of sh*t" pretension running through their veins. Then I typically leave because I don't want to read it. Here's a few remarks though because I'm in a pretentious sort of mood.

Mockingbird: This thread is actually titled Poverty Vs. CF. Are you serious? The title of the thread itself implies that we're about to argue which one sucks worse. Who cares? I'm willing to bet they both suck pretty hard. The fact that you made another thread branched from an original thread just to address WinAce and actually make him feel bad about himself instead of approaching the topic in a serious manner is so callous that I can't even fathom it. The opening sentence of the post reads "Did you get your pride hurt? I'm sorry." The amount of immature sarcasm there is unbelievable. Where's the intelligent discussion? Why even start the topic, man? "Sorry to break it to you, but just because you have cepacia and need a lung transplant, you don't have the worst life in the world. " You've got gems like this floating around your original post, which you directed at a kid who is actually about to die because he can't afford a lung transplant. Are you kidding me???? Maybe some people somehow do have it worse. Maybe Africa is wrought with people who would just kill to be in WinAce's shoes (doubtful) but even so, you don't say sh*t like that to a kid in his position. Damn. Beyond all this, I don't even know why you had to start this thread. It was an awful thing to do from the beginning. You could have just left WinAce's idea in the other topic where it belonged in context and had some level of understanding or sympathy for the kid that you didn't have to point out so graphically how horrible it was that he would even suggest such a thing IN A BRAND NEW THREAD. Wow. My brains hurts right now.

WinAce: Man, I don't even know what I would have said in your shoes. You got attacked for no good reason. I don't agree with your outlook on life, but I defend to the death your right to explain it. CF does suck though a lot though. You actually touched on a really close to home idea about how we all wear our armor about how we're not supposed to say how bad it is to other people. If there is one place we should be able to take it off, I suppose it is here.

Sorry if I came off as a preachy douchebag. Well. Sorry I'm a preachy douchebag. Some things in life just make my head spin and I don't know why some other people think it's okay.

 

[Lilith]

Alright...*sigh* I'm posting again because this is a conflicted topic for me and I need to spew. In my point of view, I agree with both WinAce AND Mockingbird. I agree with WinAce that yes, this is probably one of the worst things anyone has to go through. I'm not in his shoes, nor am I anywhere near his level of illness. My FEV1 is in the 65% range, so I consider myself lucky up to this point. But I can't deny that I've cried myself to sleep in fear of what is probably going to happen to me in the future. I don't want to choke to death on my own phlem. I don't want to be chained down to a hospital bed, unable to move because of the agony. I don't want to feel like my lungs are on fire just because I'm trying to breathe. From the personal aspect, I don't want my family or boyfriend/husband to have to watch it, either. I don't even want to have kids because I don't want them to have to watch their mother die, or to put them through the same kind of hell.

And yes, it IS Hell on Earth. Maybe not the only type, but it's certainly up there.

But I also agree with Mockingbird that there are hundreds of other dibilitating diseases that ravage the body and the mind. Poverty is a horrible thing, I'll agree with that, too. I don't think it's as bad as dying of a disease, however. At least most poverty-stricken people (unless they have a disease on TOP of that) can breathe! Probably the worst part of CF, the thing that makes it so damn terrible, is the fact that most of us have to live with it for a LONG time. Some people think that the shortened lifespan is bad. I look at it the other way. I'd rather die early than have to carry this out for 85+ years (whatever the normal human lifespan is today). The mental aspect is what ultimately kills, I think. Cancer patients, at least, usually aren't born with it, and it kills them quickly. That to me is mercy compared to agonizing over literally every aspect of your life until the day you finally die.

Don't take this the wrong way, I'm by no means suicidal. I'm just making a point.

So, after all this rambling that I've done, all I have to say is this. WinAce, you have a right to feel the way you do about this disease. I can totally understand where you're coming from because I, too, have the same kind of thoughts sometimes as you, and by no means do I look at this disease (or the world, for that matter) with rose-colored glasses. Mockingbird, I can't say that everything you've said to WinAce was wrong, but perhaps not worded in the best way possible. Yes, there are some pretty nasty things out there in the world, and CF is just one of them.

But you have to admit, it's on the worst side of the spectrum.

 

[anonymous]

If you don't want to know about CF <i>as it really is</i> -- which is perfectly understandable, given what it really is -- then don't read the threads in which concrete details about it are likely to pop up. A thread that addresses the competing pitfalls of poverty and CF is bound to contain some stark observations, don't you think? No need to read it over breakfast, or at all.

That said, I don't see how illustrating the truth about CF represents a "bad attitude." If you prefer sugarcoated clichés and truisms, more power to you. They might keep you sane. Others, however, might stay sane by addressing reality as it is rather than as they wish it were or as they heard it ought to be. Why are these people automatically labeled "pessimists" or "complainers"? Their approach might not be everyone's cup of Kool-Aid, but at least it holds up to scrutiny.

As for the poverty-CF comparison itself, if you ask a guy who is poor <i>and</i> has CF -- hell, if you ask <i>me</i> -- which problem is worse, what will he answer? Most days, he'll say the illness is worse, especially since it likely has caused or contributed to his poverty and limits his ability to climb out of it. That he even entertains the possibility of climbing out of poverty tells him his illness is the worse problem because, as someone pointed out, he knows he'll never climb out of having CF. Still, on other days, he might say his poverty is worse, since it limits his ability to treat his illness in addition to causing the other woes Mock mentioned.

The point is, it's not necessarily one or the other but often one <i>and</i> the other. You read on these boards that "if it weren't CF it would be something else." Again, that's a nice, comforting sentiment, but it's not true. If it weren't CF it might be <i>nothing</i> else; on the other hand, it could be CF and <i>everything</i> else. I don't see how having CF somehow keeps other misfortune at bay.

Q