By Christopher Green
Good old reliable Webster’s tags it as that“quality or state of being lazy, sluggish, or indifferent.” I say, as it applies to me, that I would call it a reaction to events, of sorts, or perhaps a seven year itch that is too bothersome to scratch. Or, in that ironic parlay of those decades younger that I, whatever, insert shrug here.
But it isn’t the first part because I’m certainly not lazy, although to some people, including a few of my former clients; it just might appear that way. It could very well be the second part, being sluggish because lord almighty, it seems as if every day feels like I am full of sludge before I even drag myself out of bed.
And so I think that the part that applies to me is also, I imagine the bane of people dealing with a chronic disease everywhere and that is resigned indifference.
Try to put yourself into my shoes for a moment, and so I am asking you to imagine the daily routine of someone with a chronic disease. They call it managing your disease or condition or whatever it is that is afflicting you, whatever it is that makes you feel like Sisyphus, whatever it is that makes you beat back the tedium of the routine, whatever it is you face every day when the escape of dreams falls out of your eyes and you realize you are right smack in the middle of your real life again.
This routine I go through every day to stave off the inevitable has been well documented previously on this blog, but in case you are new… I do twenty minute breathing treatments four times a day. I use a nebulizer to inhale an antibiotic twice a day, 25 minutes per dose, every other week, I try to exercise and I take over 15 different medications to manage my various conditions. So on a slow day I devote over two hours of my time toward medicine and treatments and on busy days, about three hours.
Don’t forget this all happens with external oxygen with me at all times. Without that O2, I could not function at the compromised level in which I operate already.
I know people who have been in far worse conditions for a lot longer than I have. I look at Cuyahoga County Judge Peter Sikora, a friend and one of my last connections to the world of politics, and wonder how he does it. He has been in his wheelchair for decades and yet I have never seen him fall into that particular form of melancholy that lurks right behind the optimism needed to literally depend on people for your life.
He has been and always will be one of my heroes.
I guess it might be the seven year itch for me. After all, it’s been a little more than seven years now that I have been tethered to an outside oxygen source. But it’s been more than 25 years since I took my first dose of medicine related to my respiratory problems.
That’s almost half of my life swallowing medicine and doing breathing treatments.
Sometimes I think I am the profit margin for the medical industrial complex. But then again, if not for those people who are dedicated to profit AND medical salvation, I would be dead. Never less, I am often conflicted about that sweet spot where altruism meets financial gratification.
Let me give you an example of why my resolve has been shaken.
As anyone who has followed the blog knows, I am always in some sort of respiratory distress which usually presents itself in the form of mucus, lots of mucus that, when I lay down, collects in my lungs in a different manner than when I am awake.
Of course when I am awake and alert, I do all sorts of stuff to get that excess mucus caused by yet another in a string of a hundred different infections up and out of my lungs. I do that pneumatic pump vest that breaks it up. To get that mucus in condition to get out of my lungs, I drink
gallons of water and other healthy drinks like green tea and vitamin waters to help the process along.
I am including some more information via links about my pneumatic vest and some of the real reasons why health care costs are sky rocketing with regards to medical devices at the end of this post.
So the first thing in the morning, when I am in one of these exacerbation periods, I need to get things moving in order to get me going.
Think about it this way. You get up and before you can make it to the john or the fridge you have to do some kind of inhaler to start off the elimination process. Of course, since the mucus has been given six, seven or if I am really lucky (cursed), eight hours to coagulate, it takes
longer to get going.
I think there is an exponential relationship between length of time lying down and the amount of time it takes upon waking to be able to take a few breaths in a row and not lapsing into a round of deep painful but productive coughing.
(Now I know this is getting a little clinically graphic, but it really enhances the “feel” of why I am currently in a prolonged stretch of lethargic funk. I’m not sure but isn’t that redundant?)
And the exhaustion that sets in. Remember I am compromised to begin with, so I am always a little tired. But during these episodes, I get grizzly bear tired. I sleep through the hours and so, of course, let people down.
Now that was my favorite thing to do when I was in the deepest throes of my alcoholic daze, letting people down, blowing opportunities, you get the drift.
Well now when I have the perfect excuse, I am still pushing people away.
My world seems to be closing in on me. Not getting out of the house enough. Hell, not getting out of the living room enough. It’s very easy to slip right into that drama of being a modern day version of Camille only without the romantic choices and not being in Paris. Westlake, Ohio is nowhere near as cool a place to waste away as Paris.
This stretch is ruining my resolve, getting under my skin so much that I have no more spare room between my bone and the outside world.
I know I have finally worn out my welcome to a lot of people that have meant well over the last seven years with invitations. They have slowed down to a trickle. The person who is harmed the most is Laurie since she has to put up with my mood swings, the people that we know who no
longer send invitations.
Anyway, just when the whole world is opening up, my world is closing in. One thing I can say about my life is that I had absolutely the worst timing of anyone I know. I have blown so many opportunities because I wasn’t ready to take advantage of them when they came along.
Still, all is not so bleak. I am writing and really learning to play the guitar better than I did back in the days when I was getting paid to kind of sing and try to play in front of people.
I guess in the long stretch of life you have to learn how to adapt or you are just there.
I am still not willing to head over to the clinic and say give me those lungs. The risk, at least to me, is higher than getting the transplant than being restricted.
We shall see how that is going to work out when I head over to the clinic, probably within the next month to see how I am doing.
I want to apologize for not writing sooner than this.
But it’s been a bad month for me and my diminished skills.
is a link to the vest so you can, if interested, find out more about this particular device at this link:
By the way, we decided to purchase this from the company in order to limit our costs. Most people would keep on “renting” this device through Medicare and insurance and so end up paying at least four or five times the amount it cost in insurance and insurance copays to outright purchase the equipment.
I investigated and found a way to buy it. Most people are REQUIRED to keep renting this and other medical devices even though it would be cost effective to purchase them out right. You can thank former Ohio Senator George Voinovich, for one, for insisting that the status quo remains when legislation came up to allow people on Medicare purchase medical equipment. This link to The Heritage Foundation, a conservative “think tank” had this to say…
Campaign contributions from companies such as Invacare went along way to persuade republicans and democrats alike to keep the status quo.
And here is a link to a Fox News article about former senator Voinovich. This is all about preserving revenue streams for medical device manufactures instead of looking out for the long term costs of providing medical assistance to those on Medicare.