7/1/07 - My thought for America...........

Ill keep this plain and simple, not all 270,000 of you, but the cross section of America represented by the 30,000 - 40,000 people who were at the NJ State Fair yesterday, as well as the people that this charitable works have put me in touch with - you disgust me.

Now I know this sounds harsh - so let me say something politically correct to assuage this; too fucking bad. Truly, all those people mentioned - you disgust me. Lets go through the roll of dishonor if you will and chop these demographics as I fill in my disgust.

First and foremost - the people who run the fair are exempt from this whole post. They went out of their way to set us up as well as they can in a spot that those who have tried before to get a 'spot at the fair' can tell you was the essence of a sweet deal. I want to thank you for the shot, one would think that in a numbers game that access to an average of 35,000 people would give us an excellent shot at being able to raise money for those who need it the most right now. I mean $1 per person, would be a shit load of money and there wasn't a person there that would fork over $1 and go into bankruptcy and or become homeless because of it. NO ONE. However - after 10 hours of work and an immense set up we took home a sum too embarrassing to mention. That's absolutely disgusting.

So LETS STARTS IT OFF shall we...........

People at the NJ State Fair........you disgust me! You are Americans! You have been blessed either by random chance OR by luck to be an American instead of born into some third world country where you have to pray for your next fucking meal! And yet yesterday, you paraded by, eating your $6 hot dogs, drinking your $4 drinks and when you stop by our table and find out that were looking for a one dollar donation, for which you would get a raffle tickets AND a postcard, you get this glazed over looked in your face that's nothing short of priceless! Its that look that says the following - "I'm too fucking cheap to give you a dollar and now I need away to skulk away from the table without LOOKING like the cheap motherfucker that I really am." And this culminates in many ways; the I'll stare right past you once you tell me that the shirts and things aren't free, the I'll feign deafness once I hear any dollar amount, the I'll just back away to a safe distance and then flee. But what gals me is that you came over to see if we were giving the shit away so you must have fucking wanted it. I could cite incidences of this but they were too numerous to list and I have no desire to vomit on my keyboard. I have an idea for you - the next time you sit in front of your TV and look at something terrorist related around the globe and wonder; "why do they hate us so much?" look in the fucking mirror. But yet, as we drove away from the event; exhausted and dejected - the parking lot was full of cars with bumper stickers saying Never Forget 9/11/01!

People who say you want to help out but find new ways to never be around when we need the help........you disgust me. Yes, and if this is too hard to read (again) too fucking bad. I talk to people all the time and they say the same thing, "what can I do?" and when we have an event no one shows up to help. Do me a favor, save your breath and don't ask if you have no intention of ever showing up. Why even ask? WHY? Does it sound good? Does the ASKING make you feel good? WHAT IS IT? Are you at a loss for words? Hey I've got one for you - silence is fucking golden. Don't offer and promise us and then have allllll these new excuses not to be there, because we just think you talking shit right now. So save some dignity and say NOTHING. Nod if you need something to do.

First responders who take advantage of your peers to further your own goals......you disgust me. THERE IT IS - the ugly truth! I look at this problem that we face and I say to myself, this will never get better. Why? Simple........until we as a community get out shit together and stop all the bullshit, no one in their right mind SHOULD take us seriously - EVER. But what kills me is this, reality that you somehow lose and its real simple. 9/11 afforded you a quasi celebrity status because of what you have gone through, before that no one knew who the fuck you were! And quite frankly, no one gave a shit who you were - cause you ain't that interesting anyway. So now, you've been given, what some would consider the chance of a lifetime, to make a difference and call attention to a serious social issue and your fucking it up with your ego. Were all supposed to be in this together? All animals are created equal? You ever heard of this? EVER? Because your actions and words speak volumes as to you using this to make a name for yourselves and not anything more. And when people see you and us doing the same work they lump us into the same category so cut the shit. You want to save the world? You want to make a difference? Put your ego the same place it was on 9/10/01.

Overall, this was a disgusting performance by the representation of Americana. It has left a piss poor taste in my mouth. We don't have to do this, we donate our time to help our own, but were ALL SICK and were trying to save the lives of our own! The City and Government aren't doing the right thing so we have to! STOP MAKING IT FUCKING HARDER THAN IT HAS TO BE.

6/27/07 - Politics at its absolute worst

So I have been reduced, by the weather mainly but also this exacerbation, to spending all non-essential moments sitting of the sofa in front of the Air Conditioner. Believe me, if they didn't award a Nobel Prize to the lady or gent who invented air conditioning - I want to put in the paperwork myself. This device is literally saving my life. Outside of the AC, I am relegated to wandering around (well more like shuffle due to the speed or lack there of), coughing, wheezing and sputtering like that old Chevy Nova I used to drive. However - if I try to relax and remain still in the air conditioning; I can keep the coughing down to as much as possible. One problem with this would be finding people around me to identify this large difference and use some common sense in respecting that. However, that is the stuff of a completely different ranting post altogether. Back to the title - politics at its worst!

I have been watching, with great interest as these congressional hearings are taking place regarding the air quality at Ground Zero on and just after September 11, 2001. Fascinating stuff, really! Because they are devoting time and money into a dog and pony show to affix blame, show that they are 'addressing' problem, and overall trying to get to the bottom of this mess. In my opinion - 100% bullshit. They are showing Ms Whitman in the "hot seat" as they call it (leaving me to wonder who dubbed this the hot seat? last time they showed her, she was breathing just fine - that's more than I can say about me and my friends! so how HOT exactly is this seat? must be a figurative hot. because when you fight for every breath - this crap must be put into perspective). She and the committees banter about, while people testify how their health is ruined and they haven't been well a day since 9/11 (mind you these are the people that we need to pay attention to). The media and politicians, point the finger at her - she points the finger at the terrorists and other politicians (camera pans to gallery and these people are still sick and dying)!

Would SOMEONE please tell me what this accomplishes? Even if they get this woman to stand on her chair, raise both her arms in the air, and yell "I lied! And I did it to fucking KILL all these good people!" My lungs will not heal! My buddies tumors will not go away! People will continue to die! But, this is the minor part of the problem, because THEN I see the people that are politically active in the charities on TV getting swept up in allllll the bullshit! Intelligent people being interviewed, giving the verbal equivalent of 'off with their heads' at a French Revolution fiesta. And now I know why we will die en mass while the people who are supposed to protect us - fiddle as Nero did.

What we need here is action directed towards making the future different from the present, and the past. We need for the ill to be identified, and then placed under the auspices of one central agency. In looking over what is currently in place, just considering the two most notable groups (NYPD, FDNY) the two have different benefits and they all got sick from the same place! Once you radiate away from the 'big 2' what hope is there that the other exposure victims will have anything better? The answer is - one way, designate an agency to follow and treat these people, smart money says that neither the city nor state would have the funds or logistics to be able to do this - that leaves the federal government (oddly enough, the same ones that are engaged in major league finger pointing right now and not doing a damned thing about getting this 'agency' off the ground). So how would this work? Well they have a system in place for the people that served their country and can get medical care already, its called the V.A. and I hope to God any new systems don't look anything like it - because it just don't work. So perhaps by looking at the need, and taking into consideration a model that does not work particularly well - these people that are supposed to represent us and protect us can design some system that can save us!

Otherwise........I'd like to ask the circus to fold up its tent and stop wasting my time, because I have precious little of it. Save your grandstanding please, save your scapegoat, get behind some closed doors and put together something of use instead of flapping your arms and making a lot of empty noise.

6/21/07 - Longest day of the year (but they all feel LONG when you cant breathe)

When you struggle for every breath, every day feels like the longest day you've ever been through. It makes everything, even things that you wouldn't consider become a factor.

First, is the obvious shortness of breath (SOB) - this is the award winner of the signs and symptoms and the one that causes the chain effect of all the others, it ranges from mild inability to catch your breath to the feeling like someone sitting on your chest. It comes in gasps, it involves huge coughing fits, and combinations of wheezing and rattling in your chest from the mucous. From here we look into the non obvious symptoms of this exacerbation of COPD. (Mind you the horrible cough is particular to WTC COPD patients and has been called "WTC Cough")

Chest pains - when the SOB gets bad the chest pains come on. They are usually of the stabbing variety but can get entertainingly crushing, just enough so to have a middle aged guy freak that he thinks hes having "the big one". But SOB and chest pains kinda go hand in hand, were not so far out of the realm of head scratching yet.

Confusion - yes confusion accompanied by its sibling dizziness. When the SOB increases so do these lovely symptoms, the dizziness is more expected but the confusion is subtle and can last for hours after breathing treatments. Not all out wandering the halls naked confusion, but the sneaky "what did I come in here for?" confusion that you find happening over and over again. This can be from a multitude of causes, hypoxia (lack of oxygen) and forms of malnutrition that begin to occur rapidly after the onset of an exacerbation. Here's where people will start saying hmmmm. One of the dangerous symptoms is that my body burns 3x the amount of energy just to be able to breathe that a 'normals' persons body would burn. So if I'm not consuming 3x the normal calories, this is a cycle that in short order will lead to some form of nutrient deprivation.

Not far from nutrition is dehydration, which is also tied into the 3x the breathing rate problems. Every time you exhale, you breathe out oxygen, carbon dioxide and water vapors the latter being the end product of aerobic respiration even down to a cellular level. Problem is, when you are working much harder to exhale, your pumping out more water vapor with each passing breath. COPD is marked many times not by the inability to get air into the lungs, but rather by the inability to fully exhale what you have taken in; this creates a back-up situation that leads to various methods of forced exhalations.

Low grade fevers are a favorite of mine and are usually the reward for laboring to breathe all day long, they happen in the late afternoons and evenings and put that nice total body shitty feeling into the equation.

So here I am on the official longest day of the year, experiencing all of the above, looking at the clock - exhausted.......praying for this day to end.

6/18/07 - A few days of hospital stay, just what the doctor ordered (yah rite!)

So as the title says, nothing like a few days in the hospital to scare the crap out of you - and more importantly......... to remind me that whenever I think Ive got this whole lung thing figured out - wham! Welcome back to earth. As of about a week ago, in the evening, my lungs just decided to take a vacation. No one can track down why. Make no mistake, this is not from a lack of trying - as it seems people need to be able to pin these things down into neat and tidy boxes; or else they start turning on you.

Yes, once the 'usual's have been discarded - we have arrived at; "well you must have done something you weren't supposed to be doing!" And I don't wish to relay that I'm not curious as to why this happened - but it may be that I've just had a lot more time with this in my head ruminating around to accept the fact that the 'C' in COPD, stands for chronic and that by definition means that this will continue to bite me in the ass at not only predictable - but odd intervals as well. So here I sit, first day back home in a while; short of breath, confused and I felt the need for an update.........this fuckin' sucks.

And if the timing could be of the 'cant get any worse variety' - this weekend was supposed to be the weekend where we, as a charity and community were supposed to be able to go and see the new Michael Moore movie - SICKO. Do the red carpet thing, get to get some media attention on the plight and the charity, and now if I want to see this thing, it'll cost me $10.50 - just like everyone else. Great. Now I could probably launch here into a LONG diatribe about me feelings regarding Mr. Moore and his movie making styles - but.........as he has offered to help to us as ill first responders in this plight - I shall reserve judgement. So for those hoping to read something scathing about him here, you'll just have to wait, as will we all, to see if this movie that highlights at least 3 ill 9/11 first responders who receive free medical treatment in Cuba - can get the attention of a blissfully ignorant nation. If he can accomplish that, then I may very well become one of his biggest fans for saving all of my friends lives.

Otherwise, here I am - a bit battered and run down, certainly humbled by the last week - hoping like hell that whatever set this off; chooses to do it few and far between.

5/24/07 - Yankees take 2 outta 3 from Boston, but the pregame ceremonies leave me wondering.

Last night I got to go see a Yankees/Red Sox game (for the non NYer - these tickets are hard to get), and amidst all the pageantry of the stadium and almost pristine baseball weather - there were ceremonies held for the victims of the 33 students killed in the Va Tech shooting of a few months ago. The field had the logo of the maroon ribbon with the black 'VT' across it by the on-deck circles, the Yankees wore the same logo on the side of their hats, and there were many dignitaries that appeared behind home plate to be recognized by the crowd. Some were University people, some were members of the emergency services that were involved in the tragedy. And it was very emotional (I have a friend who is a Va Tech alumni), right up until the moment when the Yankee Captain, Derek Jeter, trotted out from the dugout with one of those over sized checks in the amount of One Million Dollars addressed to Virgina Tech University - and my immediate thought was; what the fuck?

Sad as that may seem, its the truth. I, sat in the stadium and thought; if you can give $1,000,000 to a University that lost 33 people, why cant you give money to the sick first responders in your own city? So I allowed these thoughts to marinate in my brain for the duration of the game, and they got worse as I had to excuse myself to nebulize shortly after the first inning, and worse still as I ran into a guy I worked with in the concession stand line and him and I spent 30 minutes swapping stories of how fucked up our lives are now, thanks to the WTC. So by this point in time, these horrible thoughts were ripe in my head.

It was here that I started to calm a bit, the Yankees started to win and I began to calm down, and think with a bit more clarity. I remembered that after 9/11, Yankee Stadium was the site of a ceremony and they had the first responders to the stadium for a game of thanks. I was in that toxic shithole, Ground Zero (of course I wasn't calling it that then - back then there was a purpose still; bring home as many people as possible) but I did hear that they had done some really nice things there. And it was then that it hit me that tragic events have a really fucking short 'shelf-life'.

Back then, late September and October of 2001 - man, WTC was all anybody could talk about. Now, its a tourist attraction, a logo on a shirt and a 20 second sound byte as the 're-building' progresses. But what happens to the people after the glitz and glamour (if you will), the media attention fade? There are people involved in these tragedies, what becomes of them? Well as for the people effected by 9/11 I think I've spent enough time ranting about whats happening to us, but what about other tragedies? Well as far as the victims of Katrina, in the gulf coast, we will probably never know any additional cost of life - however while New Orleans is 'up and running'; a short trip outside of the city will show anyone who cares to look - that all is not well in the Gulf Coast.In the Tsunami in Asia of 2004, the death toll was calculated at 229,866 - however, 2 and a half years later - due to diseases caused by the lack of sanitation; the death rate has now risen to 283,000. That's 53,134 additional people dead from diseases following a tragedy - and they went completely unnoticed! Now Va Tech is the site of the latest tragedy, and so they get a trip to the mecca of baseball and a million dollars from the Yankees and are pretty much on their way to obscurity like the rest of us.

My problem, and hopefully one that wont emulate the Tsunami, is that this tragedy isn't ready for the history books just yet. See everyone that passes now, is still a number to be calculated in 'the butchers bill' of 9/11. But THIS is how short a shelf life tragic events have. Its like our action movies - we have a max tolerance of about 120 minutes for it. This is how long term events like war and genocide continue - the people perpetrating it know that even of they are discovered; all they have to do is wait a bit for people to forget and then they can get right back to the business of warring and killing. So here we are - after our allotted 2 hours of action movie are up, plus after the news stories of 'the sick rescue workers' have all be written and we suddenly find ourselves in what category now? Passe'?