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] 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.


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.

Where Have I Been??? Reasons To Believe.

Hello, all.

As you can see, it has been about 5 weeks since I’ve posted last. I’m getting a couple of things prepared right now to get this blog back on track. I hope to make it both entertaining and interesting for you as well as useful and productive for me as I face down my illness and try to maintain relevance.

I have also been experimenting with sites like Klout and Empire Avenue to find ways to build connections that are good for all of us, so stay tuned.

I need to show you nothing but my best, so that the bar is constantly set higher for me to achieve. Stick with me, and you won’t be disappointed.

Watch for postings and tweets for the next, and more frequent, posts.

While you are waiting, here is one of my favorite Jimmy Webb songs. There is no hidden meaning, just helps me get back from a brief absence.

[Pulmonary] Of Anniversaries, Happy And Happier

Anniversaries are odd things. Because the word is often proceeded by the word “Happy”, you tend to think of Hallmark moments and celebrations. Yet, all of these words, when absent of the qualifier “happy” can take on a lot of very different meanings.

This month is the 2nd anniversary of a hallmark moment for me that would not initially be seen in even the same town as the adjective “happy”. However, I still choose to celebrate it, because a celebration reminds us of how far we’ve come and how far we need to travel to get to the next “celebration”.

This month is also the 5th anniversary that deserves the word “happy” leading it proudly. For the sake of proceeding in a calendar fashion, I’ll visit that celebration first.

5 years ago, on a Friday the 13th in the month of April, I weighed over 420 pounds. I had been big for a long time, but when I turned 50, all of a sudden things changed. I was still outwardly the same person, but in my mind’s eye, that was no longer something I wanted to accept.

I used to give a lot of presentations and speeches concerning the video industry and other topics. As I planned for these events, I had a mental picture of myself successfully imparting my knowledge and ideas, and looking much thinner. It was a pleasant and professional vision, because I believed in my knowledge so strongly that I felt it so overwhelmed my body image that my message would still be received with great enthusiasm.

However, as I hit 50, I began to feel the “I’m getting older” thoughts elbowing their way into my life. The biggest way that they manifested themselves was in my confidence with others. No longer could I picture myself on stage, making a presentation in front of hundreds or thousands with a confident body image. I saw myself as I was, and it took a toll.

Since I had tried without success to diet, I decided that a scarily big decision had to be made. I had not been hospitalized overnight since I had my tonsils out as a child. However, I investigated having GASTRIC BYPASS SURGERY. I underwent the full procedure, simply because there is no turning back in major life decisions for me. Since then, my weight dropped as low as 250 pounds and my pants fall down much more pleasingly a lot.

This was a hard decision, and while I enthusiastically support anyone who wants to do it, I also advise them to choose a program that will get them ready for it. I had 6 months of psychological and motivational meetings to make sure that I was ready for major surgery.

So, a 5th anniversary of losing 170+ pounds is a good thing, a “happy” anniversary.

Two years ago in April, about two months after I had my second knee replacement surgery, I went to my pulmonologist because I had a terrible cough in the morning, a dry cough that made it tough to breathe and even stand up. My pulmonary doctor checked me over and took me for a walk in the hallway. I did not make it the length of the hallway before my oxygen levels dropped to very low levels.

They admitted me for some testing and then decided that a biopsy was needed. I had lung problems, but all the tests they ran were inconclusive as to just what kind. I never smoked and really didn’t drink, so they needed to see exactly what I had. I had the biopsy the following week and was diagnosed with an ILD (Interstitial Lung Disease) classified as NSIP (Non-Specific Interstitial Pneumonitis). My feelings and fears were as vague as what that diagnosis implied.

It was not a cancer, COPD, or other more easily recognized conditions. I was terrified, since this was just a beginning of exploration. This followed 8 months of highs and lows, from being laid off from my general manager position at TLA Video because the stores were being phased out, to successful double knee replacement that allowed me to bend at the knees, which you really don’t miss until you cannot do that.

If you click the PULMONARY tab in the masthead above or in the KEYWORDS, you will find more details on my disease. I don’t want to repeat them all over again to save space for the current 2nd anniversary update.

Since NSIP is progressive, you cannot cure it, you cannot reverse it, you cannot ignore it. The best you can do is to slow it down to as close to a glacial pace as you can and work to figure out how to live as relevant and useful a life as possible. Knowing that you will probably never be able to return to a work environment, the vague future needs to be rethought and that is what you now strive to do for the future.

I do a series of tests every three months in addition to checkups and doctor visits. These tests usually are two parts and I do them at the Penn Lung Center at the University of Pennsylvania. The tests are strenuous and a little daunting, if only because you know that the next phase of action is based on what these tests show has occurred to you since the last set.

They are not physically strenuous, like the pulmonary rehab exercise sessions that I do a few days a week. The first part is a six-minute walk, which is exactly what is says, except that you have monitors present to gauge your oxygen levels, pulse, heart rate, BP, and fatigue. There is no right or wrong with these tests, you simply proceed at the best pace that you can and periodically give feedback on how you are feeling.

Six minutes can seem really really really long when the walk is in a bare long narrow hospital corridor that looks like a Hitchcock trick shot. However, your progress here shows what you can expect on your own and also boost your confidence when you are out in public, walking to get here and there with your oxygen buddy.

The second set of tests is the most exhausting. These are the PFT’s or the Pulmonary Function Testing. This is not physically strenuous like exercise would be, but it involves a series of breathing tests that are designed to measure your lungs capacity, power, ability to exhale, gas exchange levels, and other things. This usually takes about 25-30 minutes or so. The exertion is purely the result of so much intense breathing in such a short time.

The test themselves are performed with a clip put on your nose so that you must breathe through your mouth. I hate the clip because the sinus pressure is then felt in my ears. It feels likes cabin pressure on an airplane. Some of the tests are perform in a chair, with a mouthpiece attached to the unit. You breathe normally and then must inhale quickly and deeply, then exhale for a few seconds, seeing how smoothly and completely you can clear your lungs.

The other part of the test is conducted in a closed booth that would have intimidated Charles Van Doren on THE $64,000 QUESTION. These tests also include the introduction of some carbon monoxide into your system for the gas exchange, as well as some very odd feeling resistance from the machine as you attempt to inhale and exhale. One of my problems is that, at times, I would cough before it was finished. Totally unavoidable, but a reason to have to repeat it again. My record is four times on the same test.

Finally, I see my specialist and we see what the plans are for the next three months.

The good news is that I am now off of the evil, nasty, weight adding steroids! HUZZAH!!! We have been decreasing them over the last six months. At one point, I had put 45 pounds back on and got really puffy from the prednisone, topping out at 298. However, as I adjusted my diet and got off the steroids, I am now down to 268 and hopefully getting even lighter. The only concern is that I have to monitor the weight loss, because a rapid weight loss could be a sign of disease progression.

I also now get to see the results of my PFT’s, even though I may not really understand some of the medical terms. The tests see a PREDICTIVE level for each test based on my height, age, and weight if I was healthy. This is compared to the ACTUAL , which is what it says, the actual ability of my lungs. In percentages, these results show around a 50% loss of capacity and ability in my lungs, mostly from my left lung. This has been steady for almost a year, so we have this mother tamed for now.

However, this will someday not be the case and when that starts to happen, I will look back on this anniversary to celebrate what I have accomplished so far, and happily look to our next step.

The great thing about anniversaries is how they are numbered for each passing year. My intention is to be numbering these “anniversaries” into a very high and very happy double digit future.

My buddy

My buddy 🙂