1/12/07 - An amazing gift(s)

Well the weather has stayed to this side of cold for the past few days and, as expected, this is not helping the breathing issue. And as explained before, the best way to manage this is by staying out of the cold and staying true to the medication regime. This in turn, however, means that I have to be close to home every four hours to be able to nebulize.

Now some research online has shown that they do have portable nebulizers. It is amazing that medicine has advanced to the point that it has. People often think of 'medical advancements' in terms of something that 'cures' something. A new drug or procedure that comes along to remove a health malady entirely. But as I go through this journey, I am learning that sometimes the advancements just allow the ill person to be able function more in 'regular' society. However, in looking over finance and need - I had resigned myself to the fact that this piece of equipment was not something that I was going to be able to add to my arsenal against this illness.

Well much to my surprise, a friend got together with family and has given me one of these portable devices. I was stunned, as one might imagine this is not a 'gift' that I would politic for months in advance of Christmas or my birthday - so for them to take it upon themselves to get and give this to me evokes emotion that I am hard pressed to describe. Its people like this.....

The '(s)' portion of the title refers to another gift that I (or more accurately the charity) has received. The charity has taken an image to not only raise funds but awareness of the plight of those of us who are getting sick right now. The combination of the original idea, finding a photographer to take the shot and someone to format the image (it amazes me what people can do with photographs) all took some time from conception to finished product - but it was done 'in house'. This means that either someone who works with the charity of someone they felt they could ask a favor of did all this work. So at this point we were left with (what I think) is a very powerful and moving image and now needed to shop around and find the most cost effective way to get this out to the public.

This is where the gift came in. A gentleman who runs has many business affiliations stepped up and offered us to print 2001 of these images for free! This is amazing. The cost of printing this number of posters could easily run north of $5k and he came to the charity and said, in a manner of speaking, that this was the least that he could do for those who had given so much to this city and country and still continue to give. He also has made it to point to try and work with the charity to raise and or donate as much cash towards the cause as he can. Its people like this.....

Its people like this.......that come along and restore your hope that this may not end as badly as it looks sometimes. Its people like this.......that show up when you least expect it and give a pure gift that gives you the energy to drag yourself out of bed in the morning because now you see that there are those who are there to help you out. Its people like this........that let you know that while the politicians and other 'talking heads' argue the validity of WTC illnesses to save themselves a buck, that there are those who have not abandoned common sense.

I know that most of my posts have not been happy, but it was a pleasure to write this one. THANK YOU.

1/10/07 - Winter is here

Oh well as I ended my last post, winter has indeed arrived. We have (over the course of a very short week) gone from spring to winter. Saturday it was 70 degrees. Today the high will be 38. This isn't helping me breathe. I've become almost leashed to the house, because I need to be able to use my nebulizer every 4 hours. This is problematic in more ways that you can think.

Starting back in the balmy 70 degree day, we had gone to visit friends that we had not seen in some time. They have a 5 month old daughter that is adorable. We decided that the day would be perfect, drive out there and even if the mood struck the new parents we could take the baby outside for a little while. I used my nebulizer just before I left the house and we set off. Now I have a Proventil inhaler to use that I can carry around with me, but it doesn't work half as well as the Albuterol treatment that is delivered via the nebulizer. While we enjoyed the visit, because we had not seen these people for a while two thing stuck out for me.

First - it was the first time we had been together since I had really gotten sick. This presented a different situation for them and me. For them they have been used to seeing my at some of my most active moments, now they are seeing me at some of my most limited. For me it was the first time that I had been around someone new for a while, and their reactions surprised me. To put it in a word - their reaction consisted of varying levels of pity. If there is one thing that I cant stand - its pity. I've done and accomplished too much to have someone look at me the same way they would a stray dog that has been hit by a car. It makes me angry. What I really want, is for them to look at me and for themto get angry! Angry at what is happening and so angry that they look to what they can do to change things. Who can they call, or write to? Who is going to make sure that more people don't get sick? For them to look past me, their ill friend and see a multitude of others - but they don't. They only see me. What good is that? I try to illuminate them by telling them the stories of all the others that this is happening to, but you can see that they only see me. My other-half is so sick of hearing me relate these stories that she can hardly stand to hear it again. Which brings me to the second difference between this visit and all the others we have enjoyed with this couple over the years.

At some point in time, the puffs of the Proventil pump just wasn't getting it done. This happened to be mid-way into when more people had shown up and things may have expanded to dinner and movies for all involved. But because of this increasing shortness of breath, I had to leave and head back home to get a full treatment. My other half didn't really have much choice, she just had to get into the car. The couple didn't have much of a choice - unless they felt like piling into the vehicle and bringing the baby along back to the house - because I needed to nebulize. This isn't the fist time this has happened by any stretch of the imagination. They very next day when we were taking advantage of some after Christmas sales, it had to be cut short on account of SOB. My life, my activities have reached out and pulled other people into it. This isn't what I want to happen.

In the whole my other half is great about this, she usually is reminding me of when I have to nebulize so we can start to head home - but sometimes she gets downright frustrated with what's happening. I mean at this point I'm on 4 hour leashes (including travel time!). The alternative, I guess is that I can just not go out if I know that the trip is going to take longer than a few hours, but I don't want to do this. I want to be as involved with life as I can be. And I don't want to fan the flames of something else that has been lurking in the not-too-distant shadows - depression.

I haven't wanted to notice this, but with this last bout of backtracking, I can feel depression getting closer and closer. Now that the weather has turned colder (where it's actually supposed to be) I think my whole existence has entered winter.

1/7/07 - Even with warm weather there will be good and bad days

So we have been having the warmest winter in as long as I can remember. This, for some people (like me), is a blessing. For those who adore the 'winter sports' this is probably more like a curse. I know that I have stated on more than one occasion in this blog that the cold weather is very painful and that this stretch that we have been enjoying is so much of a bonus. However, I may have begun to think that as long as it remained warm that I would be alright. This, as it turns out it not the case. I guess if it was, I could just move to Arizona and watch all the NYC sitcoms to feel like I was home.

However for a reason that I cannot explain, it has been a very rough few days. My shortness of breath has increased even in the face of 70 degree weather in January. So I guess that I don't have as much of 'a line' on this as I thought. This may be one of the more frustrating factors of having these problems creep up in your life. Unpredictability. Or maybe its just that I don't want to fully admit or give in to what is happening. However, just when I thought that I was closing in on and narrowing down the factors that aggravate this condition, I get thrown for a loop.

Up until a few days ago when this got a bit worse, I was happily cruising along enjoying the fact that we had turned a corner and that it was being managed to a much better degree. I was able to speak for a longer amount of time without getting short of breath, not getting hoarse towards the end of the day and confining the bad incidents of shortness of breath to times when I exerted myself. Now this didn't make me happy (because of how active I have always been accustomed to being) but in looking back to how bad things were - I was grateful. But then things began to revert back to the way they were. Shortness of breath increased, sometimes for no reason. I have called my doctor and gotten my appointment moved up a week. This was something else that I was grateful for, when this is 'better managed' I can have 'monthly' appointments on a regular schedule. Now that schedule has had to be advanced again.

I know that sooner or later I will have to deal with the cold, and now with this decline for no reason, I'm that much more worried.