12/22/06 - Holiday shopping

That time of year is here again. Holidays. The sprit of the holidays is upon us! In times past that must have meant something very sacred and spiritual, but today this has come to mean flocking in droves to malls to share the 'holiday spirit' with other in the form of pushing and shoving. Now this idea isn't new to NY, nor is it new to me. I've grown accustom to this behavior over the years and made allowances for a certain amount 'inconvience' come the holiday season.

However this year I found that this whole fiasco was now complicated by my lack of breath power as well as stamina. I went into the store with a limited number of things that I had to get, so I figured that this wouldn't be all that difficult. However, just getting into the stores involved more walking than I was prepared to do. I had taken the subway around, knowing that driving would be a major hassle and the subway stations aren't located right next to the stores that I needed to go to. (Not that driving would have enabled me to park right in front of the stores either - but this is just another thing to not be fond of about "Christmas Sprit c 2006")

When I finally pushed my way through the throngs of people on the street and got into the store I was already exhausted. Sucking wind, having something to get, and not knowing where that 'something' was geographically located is where problems began to present themselves. Combine this with the fact that I was under the opinion that the gift requested was more driven by humility than desire and I found myself standing on the checkout line waiting for a gift certificate! This seems like a better idea. I didnt have to run around to find the aforementioned humble request, and I can spend more so that the 'reciever' of this gift can get things they really need.

All of this may seem strange to a reader, but I am someone who prides themselves on searching out that perfect gift. Ive been this way for years, paying close atttention to the things people say they like and need and putting a spin on unique-ness on things is my Christmas legacy. Well that legacy ends this year, and I'm not happy about it. I just dont have the stamina or breath power to do the searching that I once did. (And for those thinking that I need to switch to the internet to find these pearls, its not the same as turning something over in your hands to look at it from all angles BEFORE you buy it!)

These are the things that I find I cannot do anymore, these things all have something else in common - they ALL fall under the 'gee I never appreciated being able to do that until now' things as well. So I march into the Christmas holiday less prepared than I would like to be. This is depressing, I cant explain why exactly, but I feel removed from this whole festive season. I know that others feel the same way, Ive read emails from other sick first responders and they have been more fatalistic in thier writtings. When I first read these words, I was a bit put off, feeling that these words, as written, represented giving up. However now that Im going through this, my first holiday season ill, I am reaching a deeper understanding as to what these people are feeling.

One email that was sent said that "we as first responders need to celebrate every holiday that we can; as we do not know how many of them we have left". Its sad but I know, first hand what the author of that statement means.

12/19/06 - The luck of warmth ends the same day as a doctors appointment.

I hope that everyone hasn't missed me too much, but by some stroke of luck the weather in NY has been useasonably warm. We've probably been somewhere in the neighborhood of 15-20 degrees above normal. This works out well because the cold bothers my lungs a lot. So for the past two weeks, I have enjoyed a bit of a respite. But somewhere in the back of my mind, I knew that this would not last. And today the weather and the calendar caught up with one another.

So while I tried to get accustomed to the cold again, which involves a lot of burning when I breathe, I headed off to the pulmonologist for my next follow up appointment. The drive up was, of course, interesting as the holidays approach - the roads in NY tend to resemble parking lots more and more. So it takes most of my patience not to freak out on these holiday drivers who have now decided to use this time on the parkways to tend to all sorts of personal grooming details. However, this story isn't simply to illustrate my semi-fanaticism while driving, nor to say that I cannot yell at these people (which after reading these last posts would be a no-brainer) - but that even the act of becoming upset causes ones breathing rate to increase. This is inherently bad when you become short of breath while driving (or crawling along as it happened to be), so it didn't take me very long to realize that I needed to calm down and just accept the fact that when I get there - I get there.

This incident is one of many that serve to illustrated a few things; first, you never appreciate little things you do until you can no longer do them. And second, you usually will not realize that you can no longer do these things till the most inconvenient moment possible. So we can add getting upset while driving to the list of things on the things I wont be doing for a while.

I arrive at the doctors office and walk the two blocks to the building, while still adjusting to the cold. Happy to be inside, I wait for the doctor to see me. He seemed to be happy that the regime he has me on is working to at least keep this loss of pulmonary function at bay. However, as I explained to him, while the nebulizer works so much better than the Albuterol Inhaler, it does keep me kind of tethered to the house. For which he explained that this is what I am going to have to get myself to accept. This is the first of the news that I was not going to like.

He sat across the table and stated that after looking over the test results that this wasn't a simple case of RADs but was looking more and more like COPD. For the non-medical people reading this, COPD (Chronic Obstructive Pulmonary Disease) is an umbrella term used to describe lung disease associated with airflow obstruction. Most generally, emphysema, chronic bronchitis and chronic asthma either alone or in combinations fall into this category. However my symptoms take on the asthma/emphysema combo. While there have been great advancements in this disease process over the years, COPD is considered a chronic, debilitating and sometimes fatal disease. I am more concerned with the chronic part of this, I guess somewhere I held out hope in the RADs diagnosis that this would completely clear one day and Id return to a "normal life".

Well with that knowledge - I think I will concentrate on the "great advancements" that have been made in pharmaceutics enabling people with this condition to live not only longer but with a better quality of life than previously predicted. So stay tuned as we take this journey together, the drugs that the doctor has had me on have been, at least, holding the progression at bay. This is a good sign - at least as far as I'm concerned. I'm sure that there will be good days and bad days and I will more than likely be doing my entries on the bad days.

I hope that the weather warms back up a bit again, it was nice not to have my lungs burn in the cold.