12/8/06 - I need to take my own advice....

I spent an entire post before ranting about how physicians treating people exposed to the toxicity of the WTC need to 'let go' of whatever that know about 'normal' people medicine and start over. I should have listened to my own advice.

I have spent much time speaking to people regarding my condition and what I am going through. Most of this is in an effort to raise awareness and give people almost a walking 'call-to-action' if you will. I figure that if this 'sick rescue worker' epidemic has a face, especially one they know, then more people will be likely to help out. And it has worked, a lot of my friends and relatives have not known how many people were suffering and exactly to what extent. After speaking with me , they seem to have a better idea. This also prompts them to ask "what can I do?" Which allows me to funnel them towards either our charity or one of a number of organizations that are doing great work, but need funds or bodies to carry out their mission. (by the way in case anyone was wondering; that's why I'm writing this blog).

In some cases however, people tend to get that 'poor puppy dog look" in their eyes and that drives me nuts. But alas, its a numbers game; if I can speak to 20 people and have 3 look at me with pity, 3 walk away unaffected - that still leaves me with 14 people that want to help. I like those numbers. Some well meaning people however take it upon themselves to be hands-on in my treatment. I've gotten numerous suggestions to homeopathic remedies, alternative treatment options and things they think will help. In fairness to all of these people; I research out everything people tell me and some things I have either incorporated into my regime and others I have not. One of these helpful-hints arrived at my door the other day in the form of a gift.

Someone who saw our charity and works for a company that specializes in herbal remedies as well as purification systems, sent me a very expensive air purifier as a gift. I was truly touched. The machine was accompanied by a letter telling me that their children were bad asthmatics and after they had gotten the machine in their home, the asthma got much better. So unlike the pills and drinks people have been suggesting to me, I decided to hook the machine up without any research beyond the manufactures site. I mean, with RADs, one of the triggers is allergens - so removing the allergens would be a good thing. I called the person up to offer a heartfelt thank you and they walked me through the set-up process.

I chose the bedroom to set the machine up in. I don't really spend too much time in one particular room of the house, but figure I try to be in bed for at least 8 hours a day, plus I have a hard time sleeping anyway - maybe this will help. Several factors made this air purifier seem like a real good idea, first I live in a building that has been around for a while. Old walls, poor ventilation, drying steam heat. Second, I live by a 'transportation hub' that has the full compliment of cars, busses and trains going by 24 hours a day. All this contributes to a higher than normal levels of dust inside. So I hook this sucker up according to my instructions and feel that I'm doing one more thing to manage this condition.

After the first night I woke up, not having slept any better and my throat was kinda soar, but figured the steam heat was the culprit. Went about my day and attributed the kinda-worse shortness of breath to the drop in temperature. The second morning I woke up, I knew something was wrong. First thing my other-half says to me is "my throat is killing me and I think I'm getting a cold", which may have been the explanation except that not only was my throat killing me - but my lungs were on fire. Every breath I took in burned, I headed straight for the nebulizer and the first few inhalations were excruciating. After a while the nebulizer began to hurt less and I could breathe better, but throughout the day, the burning would return shortly after my treatment. This set me off looking for what this machine was doing that was causing this reaction. (This was the one new variable that was causing discomfort in both people in the house)

So after a quick hit back to the company website to find out the advertised mechanism, I began to learn how these purifiers work. According to the site, the machine works by "combining high intensity UVX light with a specially developed rare metal hydrophilic coating on an engineered matrix, Radiant Catalytic Ionization (RCI) reduces airborne contaminants, and odors while creating super oxide ions and hydro-peroxides. These products of our Advanced Oxidation Process continue working to reduce more odors and VOC's, and to attack micro-organisms." All of this sounds very high tech and wonderful, plus there are loads of testimonials on the site. Now I know, some are reading along shaking their heads - but the kicker to this machine is that I know people who use this exact same machine and swear by it. So its something in the way that this is set up, because my other-half was affected by this as well (meaning its not just me).

So looking deeper into this process, I find that this 'super oxide ion' is ozone which is a toxic gas. Ok all of a sudden this machine seems like a really bad idea. Why would anyone use them? But more realistically, why do people that I know use and love them? So I start to look at differences between these people and me, first thing that jumps out, I have bad lungs. That's primary but not the most important. What is most important is that the people that I know who use these all have actual houses and/or businesses - all places with a lot more spaces than my typical NYC apartment. According to the donor when they walked me through the set-up the machine was set to its 'lowest' setting. This setting is to purify 250 sqft. My bedroom isn't 250 sqft, hell this is NYC - some apartments aren't 250 sqft. So the machine has been shut down.

What I learned from this was simple, I have reached that point where things that seem like a good idea on the basis of 'circumstantial evidence' I'm grasping at in an attempt to get better quicker. In this attempt I may have made things worse. I need to be more careful, my lungs still burn. As for those people reading this because your in a similar situation to myself, or were considering an air purifier, I will pass on the benefit of my research.

There is nothing wrong with these units, many people swear by them - but as the old saying Caveat emptor (let the buyer beware) states, know everything about the machine your purchasing. Space seems to be the primary concern, most of the better units purify areas from 250-3000 sqft. In machines that use any 'ionic technology' the by-product is ozone - and unlike an AC unit, more is not better. They also have machines that do not put out ozone, so maybe look into one of those. Health also plays a consideration, ozone is more likely to bother you if you have reduced lung function - so keep that in mind.

12/5/06 - Weddings and Cold Weather

This weekend was interesting. It involved me switching between patient and therapist and back again throughout the entire weekend. I guess you could call that interesting. This weekend friends of mine got married, finally! It was a bit of a long engagement and everyone was very happy to see them tie the knot. Now me at a wedding is sort of amusing. Between my past medical issues and my present lets run down the list of things I cant do. No drinking, no fatty foods, no dancing (walking is a monumental achievement at this point). So what can I do? Well I found out, sit there and be a target for people who are getting progressively drunker to tell me al about there lives from DNA right up until that evening. And its only a matter of time before the questions as to why I cant drink or dance or eat what's on the table start to mount.

I usually start off telling people amusing stories like, "my parole officer is somewhere in the crowd and one drink I'm goin back." But after a few times of sending strangers walking away shaking their heads, you eventually wind up having some well meaning buddy tell someone the truth and the lot of them come staggering back to gush. And normally this is the extent of it, a few moments of abject pity and they stumble away because the DJ has decided to grace us with 'the chicken dance.' But this wedding was different, there were three civilian WTC survivors in attendance. And while our charity targets those who are physically ill from this event - so much of my time is spent listening to and helping to categorize symptoms and make suggestions as to which physicians to see and which to avoid. But these people were physically healthy but emotionally banged up.

Now as you can see by my categorizing these poor folks emotional state as 'banged up' that these things are above my paygrade. I accept that, I feel that someone's emotional problems should probably not be dealt with by an untrained individual, but this, apparently, is where the thinking of myself and these 3 went their separate ways. They wanted help understanding why the whole horrific event happened and they wanted me to tell them. WoW. If they only knew who they were asking, they would seriously think about joining me in never drinking again.

The three were divided into groups in several ways. Two were female, one was male. Two were inside the buildings and had to get out (with first responder help as it turned out) while one was outside walking with her small child. All of them admitted very soon into the conversations that their lives were an absolute mess because of this and NONE of them had been to any therapy to alleviate what they were going through. I don't want to make you think that we took over a table and held a small 'group session', however for the time it took overall that may have been a better idea - no, they somehow managed to stagger themselves into 30-45 minute informal 'chats'.

All of them led off so kind, "I'm sorry that your sick because of the WTC, you know of it wasn't for someone like you I wouldn't have gotten out of those buildings, but ever since that day I've always wanted to know......" And so it began. The questions were a clever way of 'lets say what were thinking or feeling and see if this is normal.' I've never played this game before, and I'm not wanting to play again. However I walked away from this event knowing several things that I didn't know before, or knowing for sure things I only suspected before. As the evening wound down the bride and groom expressed how glad they were that I had come, I wonder how happy they will be when they get my bill.

What I learned was this, for civilians, there is no point of reference for what they went through and saw that day. It was cruel and unusual punishment to subject these people to that kind of emotional stress. For people like me, there was a career of smaller tragedies that we had to go through to get to that day. Even for the rookies and probies, the academy had hopefully insinuated that stuff like this happens. But the civilians, the people working in these buildings or walking by in the street - PTSD is as foreign to them as Attic Greek is to me. These people lives, as it stands now, are ruined. The second thing I learned is that therapy is very necessary and for the civilians should be mandated.

Now, I'm not a proponent of therapy by any means. I gag at how most Americans run to their therapist to figure out whom to blame for their shitty lives. Is it gonna be Mom's fault today or shall we break out old drunk uncle Al, who once looked at me kinda funny at that pool party? In the immortal words of Tony Soprano, "what ever happened to Gary Cooper, the strong silent type? Ill tell ya, they knew that if they ever got him to be in touch with his feelings - theyda never been able to shut him up!" Ahhh that's deluxe. Now - with that being said, I've been through therapy in regards to this awful day. I'm not ashamed to admit this, there were times, usually anniversaries, when I felt that I needed to speak with someone (someone Id never see again) about the wild things that were going thru my head. And it helped greatly, for I believe one major reason. I needed to hear from someone that the wild, disturbing thoughts I was having were the same thoughts that everyone else was having. Now when I heard someone tell me this, I was relieved, but maintained a degree of skepticism that this is part of the handbook answer - but sitting down and talking to these three people, its right on the money.

Three people, 2 genders, 2 ethnicities - as a matter of fact very little in common at all besides their position on the globe 5+ years ago. All with the exact same feelings and thoughts. It should have been a group session, I think they would have gotten more out of each other than they did from me. One would sit down and ease the conversation towards that day and the effects, vent and leave with some words of comfort from me that I'm sure were useless. A moment later another would sit down and the same thing would happen, besides the huge feeling of deja vu I wanted to say, "hey, see that guy over there? He was there that day and he just told me the same thing!" But that would be bad (who knows I may want to take up therapy at weddings as a side occupation so Id better develop good habits now). It was after the third and final one left that I realized that the people that I had spoken to weren't 'talking out their ass'. It really was the truth, people exposed to similar traumatic events go through similar processes and think and feel the same things.

So I left that event with an overwhelming feeling of sorrow for what the civilians involved with that day. I would like to tell all of them to seek out someone professional and speak with them about what your thinking and feeling. It was not normal to go through what you had to, you were never trained for that. Talking to a professional can help. And as I walked outside I then realized something else about that night and, more than likely, many days and nights to come - the cold weather really messes up my lungs. This is unfortunate as well, you see - I've never been fond of the temperature extremes we have in NYC, but if pressed to pick one over the other, cold always won out. Its simple really, by my logic - you can always put on more clothes, you can only take so much off. But walking outside that night was really the first blast of cold for the season and it hurt. My lungs felt like they were on fire with every breath I took in. So it looks like cold is going to be a problem for me - and the bad news is, it has only just begun.