12/01/06 - The other half of yesterday into today.

I didn't want to tarnish the previous post because, in my opinion, what happened in SJU was incredible. But I've entered new phases in this battle of mine and they aren't the direction I was hoping to go in.

First, yesterday I was back at the pharmacy picking up new medication. Now there is nothing new about that, lately when I walk in I feel as I do going to my regular morning coffee guy - they say hello by name. No one should have their pharmacist know them by name, unless they live in a town of 100 people! But the 'new' part of this ordeal, was that this medication is to manage side effects of other medications that I have only started taking because of this condition. I cannot underscore how 'anti-medication' a person I am, and now I have to take drugs to deal with what other drugs are doing to me. Were goin the wrong way here. And like the snowball at the top of the hill, I fear that this is going to pick up steam.

Second, is that it would appear that my other half has lost patience in my restricted lifestyle. I have tried to keep as much 'life as usual' but there are differences in how much and what I can and cant do. The 'yearbook answer' part of me says that everyone deals with stress in different ways and that I don't have the right to say much, because my limitations do radiate out to affect other people. What they think and say is not under my control. But the 'unevolved' part of me is pissed off. I find that I push myself harder than I should so that life doesn't stray too far from normal and that others don't have to feel as much of the pinch. And when I can't accomplish that goal I make sure that I apologize for having this illness 'make things different'. But today I got the response "no amount of sorries will do it." This is when pissed off set in. I understand that frustrations lead to anger, but who can I get angry at? I'm frustrated as hell. I want my life back! ALL OF IT. I want back 5 days a week in the gym and all of the other physical stuff I USED to be able to do. But that's not realistic right now; so who do I get to be pissed off at and take it out on? The city? The Government? Osama? Who? I guess I'm just kinda screwed because the 19 guys who started this whole thing in motion are dead - so I get cheated out of targets to beat up on. This has been brewing for a while, I've tried to head it off by talking and explaining that I'm limited because of how much I can do before I get short of breath. I would hope that this would be a good enough explanation, I mean its not like anyone who knows me and looks at me when I try to move around too much or speak too much cant visibly see how difficult it is. Once again, I feel the tug around my neck of another no-win situation. Thanks.

So what do I do? The drugs Ill have to take to keep, at least in my own mind, moving towards a solution. As for the other-half, what is there to do? People can react however they want, not much to say about that. But I can say that I really don't need the added stress, I simply don't have the lung power to argue. Frankly, I could use some assistance, emotionally in what I'm struggling through. But that's not up to me.

12/01/06 - A good day.

Yesterday the charity hosted an event on the campus of Saint Johns University. This is the third event this semester, and instead of the students being tired of seeing us set our table up and try to sell tee shirts and talk about the sick first responders - they came out in record numbers. This amazes me. It amazes me for several reasons:
1) These student, besides a select few who went to Stuy HS near Ground Zero, or lost someone they knew in the WTC or are sons and daughters of cops and firefighters - have no vested interest in what's happening to the rescue and recovery workers.
2) This is a science heavy school, most of the kids that attend are going to be physicians, PAs, Med tech's, Toxicologists and pharmacists. So the problem that all these people, including myself have been having with the medical community is going to be short lived. This next generation of students that will be treating us will hit their professional schools of choice already with a foundation of what the problem is. From this strong foundation, they can build and become great health care providers.
3) The guys who went to the conference kept up to their word, they worked twice as hard because they had seen first hand the apathy and hopelessness that was all over that conference. And true to form they DID do a much better job. Its probably unfair to these guys to even compare the two events, one was a gathering laying down getting ready to die while the other was a gathering of young people gearing up to begin to fight. (Ill take the second any day)

I felt a bit off for this event though, at one time I staffed an event in NYC solo, sans car. That involved carrying 2 large shirt boxes and all the paperwork needed through several boroughs on the NYC Subway system. Yesterday I couldn't even wheel the 2 boxes from my car to the building and or back. It took help to do it. Plus I attempted to be able to speak to the students personally, but the effort was too much. Shortly after the beginning, I had to tone my efforts down greatly. I also was using my Proventil pump around every 3 hours instead of 4, which didn't escape the notice of one of the guys who is a pharmacy student. But I made it through the day and I am so proud of not only the charity but Saint Johns University on the whole.

11/27/06 - Wondering if Ill ever adjust to this.

I'm sitting here, using my new home nebulizer that my new pulmonologist has provided for me to manage the shortness of breath, wondering - if this is as good as I can hope for things to get?

I've spent a lot of reflective time about this predicament that I find myself in lately. I was an active person. I prided myself in being in better shape than kids half my age. Never mind the mentality needed to be a civil servant who works in a 'emergency' position. All of this I have had to adjust to being either removed or severely limited, and Ill tell you what - I'm having a hard time with it. Quite frankly it sucks.

I find myself looking for building elevators when a year ago I would run up anything short of 5 flights of stairs. I'm looking for places near where I live to do business that have parking spaces instead of making use of the walk to the stores in the area in which I live. (I've spent years making fun of people in my building who wait for the bus which is a few blocks away, I've made my other half miserable about this because she's famous for it - now it looks like I owe SOMEONE an apology). I can walk about 500 Ft before I become short of breath and I am used to 45 minutes of cardio 3 times a week. I cant lift, hell I cant even lift normal stuff! And I had people calling me daily to train them in the gym! I had to call a neighbor yesterday to help me get a box up from the store across from the building, and we were talking the elevator. It sickens me to think about and see what I have become. But I don't know what options I have.

I push my limits every day, the docs all agree that I should try and 'take it easy' and I refuse. I do what I must and miss only what I have to so that my life is only so disturbed. I keep in mind that when this clears up, and if I have anything to say about it - it will, I don't want to be too far behind. I've got plans, big ones. I've got future career plans, ones that make great use of the skills I've learned on my past job. But these plans, like anything that is worthwhile, take a lot of work. If I allow myself to fall off the track, I may never get back on. (This is something I just feel) I am a part of a charity that is starting to move in the direction of notice. We are making progress in getting out the message and raising funds. If I let this fall off, what will I think of myself? I've given up on thousands who are getting sick because I myself am sicker than I was. Ill pass on that thanks.

I've got relationships to maintain, and I haven't been a very good companion, son, brother or friend lately. I know this, I know that everyone on the recieving end of one of those descriptions knows this. They are all being patient with me, but I see the frustration. I just feel so unlike 'myself', that its hard to be the me they expect. I feel isolated from most people, but don't like to be around other people who are sick. Two days in the hospital and the sick people were driving me nuts.

I'm conflicted because, for the charity - the goal is to raise peoples awareness of how the illnesses are affecting the first responders, but I don't want them to know how sick I am because I would not be able to stand their pity. I am at odds with myself and my 'job'.

Overall, I guess the questions remains - is this something that will go away in time? If it is, I can stand just about anything as long as there is an end in sight. Or, is this the best life is going to get? And then, can I make the adjustments so that I can be more 'myself' with my new self? I've adjusted to illness before, I've had to, but in looking back the adjustments were minor compared to this. So while I ponder the answer that only time will tell, I will finish this nebulizer treatment and try not to get too jittery in the process.