[ PULMONARY ] Change Reactions

(Previous Pulmonary posts are listed at Previous Pulmonary/ILD Posts or just click the PULMONARY/ILD button in the link bar)

(A quick note: I tried to keep the tone light but I had trouble doing that, despite rewriting this numerous times. I’ve tried to keep the paragraphs short and segment the portions with line breaks to allow you to more easily read, and hopefully enjoy, these ramblings. Oh, and I left you a couple of my favorite musical treats at the end to leave you dancing.)

Before:

oxygen

And After:

IMG_1694

The” before” picture is my old oxygen buddy, a shoulder slung oxygen tank that I have been wearing since April of 2010. Like Robin, Tonto, Boo Boo, and others, it has been a faithful companion. But, it has been replaced by the “after” picture (well, not the picture but an actual physical thingee), the Invacare XPO2 portable oxygen concentrator. As this blog post meanders forward, this simple switchout of units will hopefully parallel what the last three months have meant to and done for me. At the very least, it will allow me to center my thoughts.

The “four months” I refer to in the title of this blog post are the months from August thru November 2012, a period of time that has been a busy and eventful for the rest of you as it has been for myself, in its own way. These four months are a milestone in my progress. These four months are pure me and where the “me” is going.

August marked the end of my 3rd year of being officially disabled by my interstitial lung disease, even though I’ve had it for an indeterminate time longer. We still cannot pinpoint how or why this developed, other than postulate that it happened as a result of some dust substance inhaled somewhere while working. In any case, for my sanity, that really doesn’t matter anymore. What mattered in August was that, for the first time since I have contracted this, my life would change in another profound way.

MedicareCard

I had to figure out Medicare…

…At age 56. What I had always seen as the( still ) prime of my life. That alone has been enough to dwell on, but then I reached the distinct pleasure of choosing a Medicare plan or plans, which is kind of like choosing from a large buffet menu when you would rather not have to eat there.

bad_buffet

I automatically received Medicare Part A because of all the taxes paid over my 37 years of working. That is essentially the free appetizer, good stuff but hardly filling the plate. If I wanted more coverage, I would have to belly up to the main steam table, where Medicare Part B was on the menu. Part B adds $99 (and soon more) to the bill, giving you more meat but still leaving the plate a bit empty.


There is more to read. Just click here.

Advertisements

In the Heat Of The Day: A Miss And A Hit

Previous posts about my ILD can be found here: Pulmonary / ILD Posts

In the Philadelphia area, Wednesday was another hot day in the chain of heat wave days that have cursed the country and the Philly area. It was hot enough that my sweat broke out in sweat. I fried absolutely nothing on the sidewalk but if I did, I’d blog about it.

However, as I have mentioned in previous blogs posts like this one (PULMONARY: The Heat Was/Is On ), I am now in my own uncharted territory. The dreaded OZONE WARNING. This announcement by concerned looking weatherpeople as part of the litany of do’s and don’t’s on a very hot day is now seemingly aimed directly at me.

Wednesday was a very hot day. Trust me. I know this because, even though I now have to concern myself with the dangers of heat to my lungs because of my progressive lung disease, I still am human. I still do not want to sit at the window and worry or envy those who can brave the elements.

The very hot day also coincided with two things that I actually had planned to do. Usually my planning nowadays doesn’t go much deeper than making sure I take my shower before someone maliciously launches the washing machine. This day, I had places that I wanted to go. And they were out of the house. Outside. In the heat. In the Ozone that I had been warned about.

So far, I’ve handled the heat as well as can be expected from someone who has hidden from it, but hiding is giving up. You can’t hide from life, too.

As you’ll note, the title of this post tells you that I had a “miss” and a “hit”. The miss involved something that I was really excited about going to and the “hit” was something to took too long to finally happen but was wonderful.

I have to use discretion with my discretionary income, since disposable income was disposed of a long time ago. I am always grateful when a concert or event comes along with an affordable ticket price. As you may have noticed if you follow me on Twitter and Facebook, I LOVE, repeat, LOVE music, with a special place in my soul for music from Philly. When I listen to a song or group that came out of Philadelphia, it not only excites me as music but also as a little bit of hometown pride.

One group/project that I have been following and championing has been a Philly “supergroup” called IN THE POCKET. Started by David Uosikkinen , drummer for THE HOOTERS, POCKET has been paying tribute to songs and artists who are essential to the history and flavor of Philly music. Started a couple of years ago, the project also benefits the music programs at SETTLEMENT MUSIC SCHOOL. I attended SETTLEMENT in Germantown when I was a kid and learned music theory and tried to learn piano and trumpet. I did better at learning how to ride the “E” bus and eat at the Linton’s at Germantown and Chelten Aves.


There is more to read. Just click here.

PULMONARY: The Heat Was/Is On


Note: Links to previous posts about my pulmonary issues are at the end of this blog post.

Allow me to be heat-grumpy for a few paragraphs. When I am done and you have enjoyed it all, you can surf off to TMZ to get the real lowdown about Tom and Katie splitting up.

There are certain universal things that you will find when you are on social media on a day like today. Among them, you know that people will moan about getting up for work, about the indignities of the work day, about traffic, about co-workers, about bosses, about the double grande fou fou coffee they had to wait for in line that morning. These are time tested and time worn complaints, they occur every day, and guess what, they are part of the work experience.

People will also complain about the weather. Surprise, weather happens everyday. Tomorrow, there will be weather. The next day there will be weather. Whether you like today’s weather or now.

Last week for the first time this summer, the Philly area had its first heat wave. Three (count them) three days with temperatures over 90 degrees and high humidty. This ended with a deluge of rain Friday night that annoyed Cliff Lee of the Philadelphia Phillies. Yes, twitter was filled with personal accounts of LAWRENCE OF ARABIA style perseverance in the face of three (count them) three days of high temperatures. True, Twitter is made for outrageous poetic license when discussing a subject, but sometimes, it is awe inspiring.

Now, Philadelphia about to go all dramatic equatorial again.

I bring up these two items to tie them into my pulmonary update. You see, the heat that you have to slog through is different in one major respect from the heat that I have to slog through. Mainly, you get to slog through it. Yes, you will sweat and be cranky and be uncomfortable and be cranky (yeah, I said cranky twice). However, you will have that opportunity to be cranky.

Pulmonary patients know that every weathercast about high heat will include both ozone advisories as well as the warning that those with respiratory issues should stay indoors. Well, that now includes me.

I used to hate the hot weather, but for very different reasons. I was hot, I was sweaty, I was uncomfortable. Except I did not have Twitter to bitchtweet about it. I had my co-workers, my friends and my family. I loved the cold weather, also loved the chill.

Now, with my interstitial lung disease, the words that every weatherperson says when the heat is high (PEOPLE WITH RESPIRATORY PROBLEMS SHOULD STAY INSIDE) become a depressing refrain. Mainly because they are true. Now, the weatherpeople also tell you to check in with people with respiratory problems to make sure they are comfortable. If you really want to make me comfortable, send me off to a luxury hotel in Hawaii.


There is more to read. Just click here.

[Pulmonary] Of Discipline And Desire

For those of you really, really good at calendars, it has been almost 6 weeks since my last update. Now for the mea culpas that really don’t matter as to why it took me so long.

As I’ve mentioned in the past, I have a couple of goals that are still being defined for this blog, and by extension, my life going forward. The main one is to use the blog to retain the relevance, impact, growth, and happiness that I enjoyed in my previous career and find a way to remain relevant to myself and others for my future. The other is to communicate with others who share my lung disease to simply say “I’m here if you need me”.

OK, I lied. There is one more than a couple of goals. That would be to entertain and interest you enough that you want to come back to have more of a conversation with me here, as well as on my Twitter and Facebook pages.

Now that we are past all the mea culpas, time for the real reason.

DISCIPLINE.

I’m not talking punishment, repetition, or lockstep actions. When I talk discipline, it is a state of mind, an ability to organize, prioritize, and exercise what you want to accomplish.

At St. Thomas More High School in Philadelphia, Mr. Pyne was our “disciplinarian”. The job description of this position is a major reason why DISCIPLINE is assigned such a negative mindset. If you saw Mr. Pyne, you had committed an infraction and were about to be punished.

You would be sent to DETENTION!!!

Detention consisted of sitting quietly in the school auditorium for an hour “reflecting” on what you did. Kind of a teenage “time out”. As hard as it may be to believe, I only had detention once in my four year high school tenure. I got it because I was the “one too many” who used the excuse that I got stuck behind a trolley on the way to school.

In reality, I was not a daredevil in school. Aside from just narrowly missing being caught when we explored the catacombs above the auditorium (they had been sealed off for years), I simply sucked at detention worthy efforts. When I was in second or third grade, I played hooky for a day. However, I spent the day laying on some lawn furniture right outside my house, like I wouldn’t be seen or caught. Diabolical!!!

Even in real life, discipline is too often associated with punishment . I have found out that, especially recently, discipline is an essential element in any effort that you undertake in your life.

For example, I used to weigh 420 pounds( I am now at 260 and counting). I weighed that for years. However, I substituted satisfaction with myself for the ability to see what I could be. That was not to be more handsome or ripped, but simply more able.

Still, discipline was terrifying, because it meant change. The trouble is that the word itself implied forced change, not willing change. That thought process went out the window when I finally got my head convinced to get my body in better shape.

The gastric bypass required a lot of preparation, including psychological, to make sure I was mentally ready to make this work. Otherwise, it would have been a total waste of effort and potential. However, the discipline came into play because what followed the actual procedure demanded a progressive discipline. Not one borne of remorse and punishment, but one born of renewed potential, energy, and life.

The discipline required after gastric bypass extended to learning and understanding a new way to eat as well as discovering other ways to make the weight loss work. As you probably know, gastric bypass is not magic. The surgeons do not simply cut fat out of you. The operation will start you off, but if you do not find the discipline to follow new dietary requirements and lifestyle changes, you will wind up failing at the effort.

This newly discovered discipline extended to how I approached everything else in my life. I found myself more focused on planning and executing anything that I undertook. And it worked. I found that, for the first time in my life, I actually had total control of my successes and decisions, that blind luck played less of a role in my life.

The same happened with my knee replacements. This operation removed excuses and allowed the discipline required to recover to morph into the discipline needed in other areas of my life. Mea culpas took a back seat to my actions.

Then along came my Interstitial Lung Disease. This too requires discipline to handle it, but a much more exhausting discipline than anything else I have ever undertaken required. It is a discipline borne as much out of a desire to survive as it is a desire to progress. So much that I now do is to slow down the progression of the disease.

Now, I attempt to find relevant ways to channel that survival discipline into as productive a discipline as I can muster to feel as useful as I did when I was able to work. That involves this blog.

I have written over the years, including a few years of covering children’s videos for an industry trade publication. However, when I’ve written in the past, there was always a defined subject, one that related directly to my position. Now, I have no defined position, so my writing has taken on a more exploring tone. My blog posts cover what I have lived, what I hope to live, what I love and what I hope to learn to love. Aside from the lung disease updates, I try to write with an eye towards what I would want to read and share with others.

Discipline to write consistently has been lacking recently. I cannot really mea culpa this. Part of it is that I still have not found my relevance in my current and future world. This leads to confidence that what I write appeals or informs at least one other person.

The rest of it is simply losing the discipline to not mentally dismiss your own efforts and not feel so important to yourself anymore. That is a tough discipline to get around. That leads you back to the old “I’ll get to it soon enough” mindset. That leads to doing it later. That leads to a loss of the discipline that I now cherish. It isn’t a lack of desire, it is a lack of self-motivation.

And that it the essence of discipline, at least according to the ADIMIKE55 DICTIONARY. Discipline is simply self-motivation. And self-motivation is something very precious that should never be lost.

Let’s just say that I misplaced it recently while trying to figure out my life. But I think I found it under my skin and am ready to rev back up from discipline to desire.

So, back to writing on a more regular (and hopefully consistently informative) basis. And if you find me lacking in discipline, feel free to send me to detention. After all, I can no longer blame the trolley for being in my way on my own tracks.