IPF JOURNEY 04-28-2017 [death by eros]

Looking at death as a woman came to me the other day when I ran across some pictures of death as a woman. I typically think of the same old image of a man in a robe and hood with a scythe. He is behind or beside some poor bugger in a bed in his last breath. The picture is sentimental and melancholic. [Including a discussion of violent death is avoided here because to do so is justwoman standing skull spoils the whole thing.]  So I found this first image by accident, actually it was in a Pinterest email (creepy, yes?) that “thought” I’d be interested. I was. I thought the theme to be unusual for a painting from whatever period it appeared to be. I was wrong. It is new.

So here stands a woman, in a very classical form, painted by a young Italian named Roberto Ferri whose work harkens back to perhaps the late Renaissance period where people still looked like people even if they were very much idealized.

My weak art history aside, the woman, Death, is not being subjugated by a male. Or raped, or carried off on a stallion, or peed on by cherubs nor even idolized in the center of an enormous shell born unto the realm of the gods.

She ponders, like Hamlet, the mortality of both men and women. Her power seems total but not without an ironic mercy for those at her feet.

Another work by the same artist, while on the same kind of theme is much stronger to me. It feels violent, and unlike our previous classic nude, appears to me to be both the cause of death and the abductor of  life – perhaps the plague, or cancer, or merely age. Her hands are older than her body which I didn’t notice at first. Her right hand’s fingers begin to redden while her left hand cradles the skull in the shadows, red and marked by the signs of age accented with a wart. Whatever Ferri was thinking when he paintedFerrio this I personally like the contrast of old hands and a young body. I’ll leave the rest to your imagination as I continue my quest for images and writings on this most intriguing topic.

 

 

 

 

IPF JOURNEY 02-14-2017 [Happy Valentines Day, and don’t forget to take your meds]

ofev-cropped-small
Ofev (nintedanib)

It was a good week all in all. Last week that is. I was off the Ofev (150 Mg) and after three days the diarrhea was gone. I could plan the day a bit then. I felt quite good, was actually into exercises, began eating and mostly enjoying it, and returned to reading and a bit of writing.

That may all be over now. We shall see. Today I began taking Ofev again, but at a reduced dosage of 100 Mg. I think I may have mentioned that it is designed to slow the progressions of the fibrosis, but does not cure it.)  I took a pill at around seven a.m. and now, just shy of two hours later, I feel a familiar strangeness in my body. It is most pronounced in my face of all things. A kind of headache in my eyes and also a something, not a tingling per se, but a “presence” through my body. I am just a little dizzy. Well, shit. Here we go again.

I am reminded of Howard Becker, sociologist, who had done his dissertation on jazz musicians smoking marijuana. Smart guy. I believe this would have been in the 1960s. A significant finding of his, which I find less and less tenable over time, is that one is actually taught to enjoy marijuana.

howard-becker
Howard Becker

Specifically, a novice smokes some while a more experienced user coaches or facilitates him or her in that the strange feelings such as a dizziness, dry mouth, hunger, slowed time and a “buzzing” throughout the body is a good thing, otherwise it might be considered as unpleasant. Well now… I do recall one instance in my teens that, although  a single case, supports this. I recall being in a car with my buddies. It was during high school. We, a couple of experienced marijuana users, including  myself, although perhaps less so, introduced a mutual friend to the drug. Yes, in a car. Yes, during high school. And maybe, perhaps, already being followed around by the “narcs”. That is true. Consider now that this would have been 1966 or 1967 in San Jose CA, the soon to become the prime city of an emerging Silicon Valley. But that doesn’t matter. So this kid takes a toke or two and soon starts talking loudly about how it isn’t doing anything. His eyes are wide and a bit strange. He was, in the parlance of the drug world, “fucked up”. Yep. But we had to explain to him that what was happening to him was a good thing and to roll with it. We thought it very, very funny of course, that he didn’t know he was stoned. It was a scene out of a movie, but one of several that had not yet been made. That would be a decade or two later. Regardless, that scene always came to mind when explaining Howard Becker’s theory of deviance to my classes, and how it is not the  act of deviance that is of importance, but rather how a society comes to label it as so.

Where was I? Oh yes, these odd feelings throughout my body unfortunately do not feel pleasant in the least. Of this I feel a bit cheated, although it appears to be the norm for such medications. Other than the likes of Diazepam and pain killers I have not heard of anyone enjoying medicinal side effects. Alas.

So what is there of any philosophical importance to this entry? Well, via a phone conversation with a person who I think can now be considered a friend, he brought up the notion of how when people are reminded of death, their behavior tends towards fear, resentment, and resistance and hostility to other groups. The name of social psychologist, Sheldon Solomon Solomon,

came up so later I knocked around the internet a bit and found a one hour lecture by him on Youtube that works pretty well as a summation of this idea.

It was based on his book The Worm at the Core, which is basically on the how we perceive death and how such perceptions exist as cultural phenomena. Or something like that. When nobody’s around I’ll probably watch it again.

I did begin another documentary on death called “The Denial of Death” claiming to be based on the work of Ernest Becker (yes, a different Becker from the one mentioned earlier) who devoted a lifetime exploring the topic. The film was a bust however and I quit watching it. I was a mix of interviews and a travel log. It lacked the intellectual zeal of the previous one.

So my quest continues. I need to go a bit further than simply playing over and over ,as well as reading, the works of Alan Watts. Although I wouldn’t be at all surprised if after all is said and done, I  ended up there after all.

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IPF JOURNEY 02-11-2017 [relief]

I have a little confession to make.

When I was first diagnosed with IPF, I got this sense of relief. It was relief of my earthly obligations. I was done. Well, certainly on my way. So then, what is the use? That is, what obligations could I have that still had relevance for me? Well, I do anyway and you probably guessed that. But this strange relief. Have you ever woken up in the morning with a cold coming on? It is uncomfortable. You are, to a very slight degree, suffering. But then you think, well, then I should take the day off. The day off! And without any guilt as well. No emails. No phones. No managers. No silly chit chat among fellow workers. A friggin’ day off. Maybe it was worth a bit of discomfort after all.

It is, or was I should say, a bit like that. I have a doctor’s note excusing me from participating in all those things I’d rather not. A release of tension. It was accompanied by a sense of bewilderment as well mind you. I was bewildered with images of me dead. And then there is that bizarre and futile attempt to imagine what it is like being dead. It is that very disturbing limitation of our brains to imagine “nothing”. More to the point, to “be” nothing. Certainly reading a bit of Alan Watts on the subject is helpful, for a while anyway. And then later it is not.

PART TWO

I know a lot of time has passed since last put something in this journal/blog thing. I wondered why during all that time I was not writing. I think I had simply become bored. Bored with the outside and bored with the inside. Or perhaps just tired. Maybe that. I have a reminder that pops up on my computers, iPhone and Watch. It says “Write every fucking day!” And I wasn’t. I dodged it. I ignored it. I felt a little guilty too. Imagine that. I did not turn it off.

Yes, tired. Getting some physical therapy during this period did not improve things. I did not eat much. I didn’t read much. And I didn’t do a lot of things of which I cannot remember, as I did not do them.

All of this was due to the great “Lung Biopsy”. I don’t recommend one unless absolutely necessary. For me it was. I usually do OK with surgery and such. I like the drugs and recover quickly. I banter with doctors and nurses, which they all loved immensely.

nurse_ratchedNot this time. The biopsy was the reason for all of that coughing mentioned in the earlier entries. And pain. I mentioned throwing up mucus from my lungs, not my stomach. A horrible and a bit frightening experience. The surgical site on my right side hurt a lot too. So I would cough and it would hurt a lot. And I was coughing all the time. Now you know why.

Perhaps more on the biopsy experience tomorrow, or even later. I have this story about this amazing hallucination and, well, later.Oh, Nurse Ratched was in it. That’s here in the picture.

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IPF JOURNEY 10-28-2016 [Robby the robot and other devices]

JOURNAL 10-28-2016

Missed a day. So it goes. No need to apologize I guess because this is all strung together so from a reader’s standpoint it doesn’t matter at all. Nothing happened yesterday. Some physical therapy. Oh, and phone call after phone call by by the “therapist” (out of the goodness of her heart) with Apria, the oxygen supply company. I won’t  bore you with the details, but if for some reason you are interested go only and read the 679 (to date) complaints about Apria’s service. Or lack thereof. Yes, a real time killer.

The condition of my condition: Walk just a little and start coughing a lot. Now the cough is a wee bit “productive” and I think that is good. Failing miserably with the spirometer, a device into which you blow into and suck slowly out and into your lungs in an effort to measure lung capacity. hudson-rci-voldyne-5000-incentive-spirometer-wiwllfsciCoughing takes all the fun out of the process. Told to use it ten time a an hour. If I am awake 12 hours that’s 120… dang! I don’t think so. But can’t hurt to try. Cough.. cough..hack, etc. The spirometer looks like this:

More on condition: I am still dragging the 50 foot tube around with continuous O2 feed. This comes from an absurdly ugly machine I think I already told you about. It puffs like it is breathing while a 199_0motor runs continuously. It puffs too. It is kind of steam-punk in gray molded plastic. Ugly as sin. Robby the robot with a bad, bad hangover. I’m kind of use to it, or am just too tired to care. Suppose to be OK on a pulse regulator when up and walking etc. But that means dragging a tank around. When using the pulse setting the Os are triggered by inhaling, which is pretty cool. A little puff, puff. It extends the life of the tank two or three times. Possibly for traveling. More on traveling later. It looks like this. Exactly:img-resize

Now for the thingy bag. It is an ancient Eagle Creek product that is maybe less than ten inches tall, has several compartments and even while wearing it is pretty unnoticeable. Nearly so anyway. I told you a couple of days ago about the contents but thought I’d share its shape and size for no other reason than to share its shape and size. Green. The metal parts are rusting out but shouldn’t actually break for a few more hundred sometings.

Reading a book called Mortal, a topic now dear to my heart. I am half way through and now very tired of learning all about geriatrics. I’m not going to get that far. Although I could end up with many of the same problems. As Donald Trump would say, “I don’t know. Really, I don’t know. What do you think?” What DO you think? How the hell should you know? But the book started off about death itself and that was fine with me. S says it gets into other stuff after the geriatric thing.The geriatric thing is, worth reading, or at least knowing if for no other reason that showing yet another example of the dark side of humanity. Or the lack of humanity humans are capable of. Essentially, old people are screwed. Hey, vote Republican and cut medicare and social security. Use the money for the young and the military and bank bail outs. Etcetera, etcetera.

But the notion of “death with dignity” is the topic that appeals to me. Of course that is pretty selfish, because it does not inherently address what the surviving spouse or maybe close family, but most likely the spouse, is to do with his or her life afterwards. Most old folks that you find outside of a cardboard box are either alone in a house that they can barely, if at all, manage, or in some kind of rest home, resting, whether they want to or not. Great planning by the social engineers. You know who you are and which side of the aisle you are on.

OK, I’ll slow down now. But there is plenty more of that coming up down the road. I think. Depends on the road.

Done for the day. Cough, cough.

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IPF JOURNEY 10-26-2016 [door nails]

One mans journey down the path of IPF.

JOURNAL 10-26-2016

Last night, with my eyes closed and I think  asleep, I see my dead body. Stiff as a board, as it were. No movement. Nothing there. I was not cool about this one bit. I also saw S crying hysterically and shaking my body once or twice – nothing excessive. Nope. Dead as a door nail.

I was saddened. I think a bit afraid too. But mostly saddened by her loss. It was as if I could feel what she felt. I guess I was sorry to go too. Of course, being gone already makes this an untenable situation, unless, well, never mind.

I’m still chicken to share this stuff but am also thinking it might make for a good read. Who talks about death? I now see why Timothy Leary had his death recorded on video. Or so it has been said.

timothy-leary-books-and-stories-and-written-works-u4-1
Last days for ol’ Tim

I cannot find the videotape online. I’m way too tired to spend a lot of time on that. Two weeks ago I would have been relentless. The fact is that a lot of stuff I get side tracked with trying to verify or get a better explanation of, clicking open window after window, isn’t really worth it. More fetish than function.

Where was I. Dead I believe. Or dreaming such. I’m taking a break now.

A bit later on:

Kind of revived right now. I think visit from LVN helped. Stimulation. Focus on something other than a blank wall and the online Guardian for the fourth time. And there is Facebook. Paid some bills. That was engaging. Really. Can’t mop, can’t vacuum, can’t do dishes, can’t cook on gas stove, can’t take out garbage – well, now that I think about it, maybe with a portable tank. But still cough after any exercise.

Hey, that new case/cover for the laptop is great – if it holds together. So three hours of online shopping and comparing was worth it after all. Dang! Anything else I need?

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IPF JOURNEY 10-25-2016 [kind of gross]

JOURNAL 10-25-2016

This is one of those days. well, there haven’t befraud-copyen very many since I started this, but nonetheless… To continue, it IS a day that has been mostly crap. I had two doctor’s appointments which is the biggest field trip since out of the hospital.

So the coughing came back. Have you ever coughed to hard and long that you start vomiting are? It is really weird. You really don’t know what is coming up or out, making prediction impossible. I.e. sit tight or run to the sink? Ain’t life a bitch. (Bad word but I use it colloquially.) [Is this a good place to start looking at how many negative epithets refer to women? Nah. Later maybe.]

This is hard today. I am coughing too much to focus. Teeth gnashing too. Like when you really really don’t want to throw up. But even this I must share.

So about those doctors. It was two meetings in which I am basically told “good luck; wait and see; maybe the new drugs will work” and so forth. Nobody saying’ nuttin’!

Really tired right now. The puking air thing came back late today, so who knows on that score?

Is this too dreary?

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IPF JOURNEY 10-24-2016 [the hose job]

JOURNAL 10-24-2016

OK, today I am forcing it. Writing that is. I seem disinterested in myself. I wonder how that works. Usually I have some sense of presence, or sense of being. That is why I trim my goatee isn’t it? It is why I chose to dress the way I do? Engagement perhaps. But that is not what I was thinking before I wrote this.

I don’t wear a watch any more. I am still quite interested in the time. But you see, as walking even five or ten feet seems to start up this never ending cough, I must conserve myself and keep the little stuff on my person, such as the time (iPhone), medicine reminders (iPhone), phone (iPhone), and calendar (iPhone). The oximeter is a good idea too. My hearing aids – I hate having to go back to the office for those when I need them. Saline solution for my drying out nose from the cannula. I haven’t even talked about the cannula and the fifty foot tubing yet have I? Later. Oh, and a handkerchief. You should have one on you also. Especially if you wear glasses or your significant other does. A life saver. No, don’t blow your nose in it. That’s disgusting.

And now, confessions of an Amazon crawler. Here is the deal. I don’t know about you, but around here, any time some new venture begins, I need some new device. A thingy. Something that is thought of as a tool of sorts, but is really only a distraction. Sometimes yes, it is a useful and even a needed thingy. Take the spirometer or instance. Um, I think that was it. Soon it will be a flexible shower head and, embarrassingly enough, a shower stool or, in my case, a bench – much classier. So far none of this stuff is a good example of what I was really talking about. It is another subject now that I think of it. Something like, here is a list of the changes in my environment I must make that daily remind me of my situation. Sounds better. But what I really mean is, well, a rocking chair has been discussed of late. Good for the legs to keep them moving. That is great! A new piece of furniture, all shiny and smelling new and for certain enhancing my life style and, maybe, even my life.  Oh, a laptop case since I am carrying it around the apartment all the time and it must enhance the integrity of the little machine. I mean, I can’t carry the laptop, lap top around. I need a friggin’ leather shell friggin’ protect it. That too about three hours total of get right. The end.

Cannula. It means thin reed. It is used to drain off disgusting liquids from the human body. But not in my case. It is that plastic tube with the little tubes attached that go in your nose to supply oxygen. Now, probably the only times you have seen this is in the scene of a movie where the main cop’s buddy is in the hospital and clearly is not going to make it.

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No, they don’t look like this these days. They just feel like they do

Or perhaps in an interview with some old guy suffering from air pollution in some documentary. About air pollution. Or in real life it is the old guy in the grocery store in the electric go cart whom you don’t want to look at and worse yet, you don’t want him to see you looking at him. That’s me now. But you can look. It’s OK. Maybe.

There are two types of oxygen feed I have experienced so far. The first, and the one that seemed to say to me that things weren’t quite as bad as they might be, is the pulse regulated portable tank. Being pulse means it pumps air when you inhale. Good idea. Long range. The other is continuous. From a tank, short range. A couple of hours? Yea, if is coming from a tank you can actually carry. Continuous means, for me anyway, 24/7. That is as bad as it gets. In the house you drag a fifty foot tube behind you everywhere you go. You sleep with it. There is an obnoxious O2 condensing machine (I’me actually grateful it is there and works) that makes noise all the time. That is my current condition. I’ll fill you in on the portable condensers when I get more information.

Here is the most remarkable thing: I adjusted immediately! WTF? No complaining. No barking at S. No blaming anything, including myself. At any rate, I’m OK with it at present. I do fear that something really weird is going on like, for instance, I wanted out of my obligations and this fucked up world, or country anyway, I’m not going to pursue this right now as I am not sure what I am talking about. But think about it. How’d you like to just turn the machine off and sit and think a spell? And I don’t mean a vacation. That’s temporary. I mean turning the whole thing off. As my nephew would say: yea….Yeah!