IPF JOURNEY 05-03-2017 [Life itself is a disease with a very poor prognosis…]

“Life itself is a disease with a very poor prognosis, it lingers on for years and invariably ends with death ”  ~Carl Jung

Carl Jung use to look like this near the end of his own “prognosis”: jung-11

One wonders if guys like him were ever happy. I don’t get the sense that happiness was ever on their agenda. Look at all the great Western philosophers and show me how many were happy. I don’t think I am happy either. I don’t even seem to want to be. So there it is.

This morning follows the previous day, but the previous day is not really over yet.

PROCEDURE:BRAVO, or Bravo, or Bravo 48 hr Ph monitoring. Along with an upper endoscopy, the bravo procedure was done to me yesterday whey most people were having lunch. A small Ph monitoring transmitter, a bit larger than a Tylenol capsule is attached to the esophagus to register Ph activity due to reflux and the like. It looks like this:

Bravo-Capsule-Size-ComparisonIt can be for a 48 or 96 hour recording period. Mine is 48, thank you. A small receiver and recorder, about the size of an old fashioned pager is kept at all times with the patient within three feet during the recording period. Imagine this: before this miniature technology a small wire ran up the esophagus out of the patient’s mouth to the reorder. You can find a picture of an unhappy looking middle-aged man looking straight at you with this wire coming out of the corner of his mouth. So I have very little to complain about all things said. The results of this test is all important to qualifying for getting on the lung transplant list. Obviously they aren’t going to plug some new lungs on to a broken pipe. I’m OK  with that. Good plumbing is good plumbing.

The recorder I am using looks like this:

pic-bravo-monitoring-systemThere are better ones. Good luck and all.

More importantly is that I got that Jung quote from listening to an Alan Watts recording which kind of popped up in front of me on Youtube while I was doing something else of which I can’t remember any more. Watts was speaking on the topic “Why Proper Discipline is Important” which I thought ironic enough to just let play on while I did other things. But I ended up doing his thing, more or less.

Discipline is a dirty word, he says, at least in our usual usage, and he chooses to replace it with “skill” which, face it, does sound much more appealing. After some comparisons to children having to learn to play the piano etc., he gets to the point of the spiritual journey, and how LSD became so popular among the young people of the 60s and 70s, but also how such unprepared tripping misses the mark regarding really gaining anything substantial – whatever that is.He is referring to the spiritual quest of the youth (WASP) of the period. There is clearly more to discuss on this topic, but what I liked was that one might make this “trip” and come back and say “wow, that was far out” or something or other, but really have little tangible to show for it. He states that “It is the immemorial wisdom that everyone who takes the heroic journey must bring something back,” in order to prove it. Maybe. Good thing to think about.

I think about LSD in particular a lot and have read some on the topic and watched some videos on Youtube. The early work by the likes of Aldous Huxley, and even Bill Wilson (known for his part in creating AA) with of course Alan Watts and a few other familiar names, Tim Leary perhaps the most obvious if not the most constructive, are fascinating.

Why does LSD fascinate me? It is because it offers the experience of connectivity. Connectivity is the common thread I found among my readings and viewings. This refers to the successful “trips” which had some manner of safety controls in place. I had one crummy and fairly paranoid trip mostly by myself under the covers of my bed when I was sixteen or so. I never tried it again. I do not regret having not actually taken it, so much as not having “experienced” it. I feel the same way about the Vietnam war. I certainly do not wish to have participated in it, but long for the genuine kind of “knowing” of it that only those where were there can truly have.

 

IPF JOURNEY 04-18-2017 [she waits in the air]

Death: 11/1997
DEATH – [I guess I wrote this.]
11/30/97

hope-iiDeath, come sleep with me
but do not spend the night
it is early yet, there is still promise
we might yet find the time
to know each other a little better

Come sleep with me
but do not think you can stay
no it is not for you to impose yourself
not yet, not yet
the moon you see, is still full

But come closer, don’t be shy
after having come all this way
why not hold my hand
I’ll stroke your cheek
we can whisper to each other secret things

Yes, that’s it, you’ve got it now
lie there, be a friend
I won’t hurt you, don’t be afraid
no, I don’t mean to tease you
I know, I know

All right then, you may go
perhaps it just isn’t the right time
you know, to stay
maybe tomorrow, yes possibly
I’ll be here you know, as always, for you

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IPF JOURNEY 04-13-2017 [I just don’t feel sick enough (yet)]

When I was diagnosed with IPF around August 2016, I of course immediately Googled around and looked at worst-case-scenarios and soon after was ready to order an urn for my ashes that very week. Really. I found a pretty cool one too.

IMG_2868
That yellow thing is a mushroom. Neat, eh?

I had, of course, jumped the gun by years. Understandably, though, I was a bit excitable at the time.

I had biopsy surgery around November 2016. It was a big deal with lots of tubes and wires and such. I got a lot of attention from nurses though. That part was OK.

Recovery was pretty horrible. Being a guy that is pretty hard on himself in life, careless if you will, I have been under the knife a few times. But never have I experienced such a horrible recovery as this one – not even after a double bypass. No, not this time. I was coughing all the time and often coughing up large amounts of mucous , making horrible noises and occasionally vomiting as well. Not a pretty picture, sorry. This sent on for a couple of weeks if I recall correctly.

But of the last few months, in spite of having to drag around a large oxygen tank when I go out, I feel pretty good. Well, periodic episodes of fatigue have been occurring. I thought it was just laziness. I don’t think so now. Actually I read another IPFer’s post somewhere that referred to this feeling as a malaise. Good word.

In spite of that, I am driving around with a disabled parking plaque and the oxygen tank and making a few visits out of the house, and doing a bit of writing and, once in a while, vacuuming the living room. We even have a housekeeper come in a few times a month. Well la de da, ain’t we living fanciful now?

So yeah, I feel like I should feel worse considering the parking permit and sitting around a lot and all. Watching documentaries and reading all manner of stuff, and scribbling thoughts down here and there and saving articles without any reason to any more. So, and don’t tell anybody, I actually feel kind of guilty. You know, “guilt – the gift that keeps on giving”. I don’t know if people experience that feeling any more. Psychologists refer to the notion of shame, but that is a bit overboard in my case. Shame is longer lasting. Maybe lasting a lifetime. Guilt can just be something to mess you up in the short haul, even if over and over and over.

Anyway, what am I thinking? That I would feel better if I felt worse? It is vaguely like having all your symptoms of some frightening ailment completely disappear on the day you finally get to see your doctor. Try to untangle that one if you can.

Maybe feeling too good right now is OK then. I mean, things could be very different tomorrow couldn’t they?

 

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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