IPF JOURNEY 02-11-2017 [what matters in the end]

It is not even 11 am yet. House cleaner is working. Spanish speaking (no English to speak of) small brown woman. It is always the same. Imagine the Vulcans landing on Earth for the first time. Probably the most obvious thing they would see in the global social structure is that brown people do all the work and white people have all the fun. Of course this would be a cursory glance, but actually because of that, invaluable. We do get a bit bogged down with nuance and forget the proverbial “forest”.

Time and Space:
It seems that whatever I am doing, or use to do anyway, always felt like it was the wrong thing and that I should be doing that “other thing.” Reading student’s papers, I should be paying bills. Writing something for the class, I should be grading. Updating the syllabus? Need to read that stuff from the local union. I “should” really finish that book I started… And so it goes.

Interestingly I never bothered to research the concept. It might, after all, be a known and even treatable syndrome. Man, a little late now. Anyway, a non-academic Google search failed just now, instead coming up with mostly  how to be efficient (not a bad idea, but again a bit late) and how not to multi-task .

On the day-to-day for today thing, coughing kind of up and down. Best not to move. I joke that I only cough when I move, breathe, or talk. Not a joke. Dr. S. is throwing another med at me. It is a psychotropic first and a chronic cough thing way last on list of applications. Not very interested. But should try anyway. Hope the side effects don’t kill me. – What am I saying!

220px-100mg_generic_benzonatate_capsules
Benzonatate

I have continued reading, quite slowly, Gawande’s book titled “Being Mortal: Medicine and What Matters in the End”, 51GzTLFuAML.jpgand it is digging deeper into how our endings tend to play out and he compares in a pretty broad sense the difference between a prolonged struggle in and out (sometimes only in) a hospital, and  getting cut and probed and drugged and such, versus the calmness of the hospice and the “human” care you receive. This really sticks with me. Dr. S. totally freaked out last week when I asked her PA about a little “I’m done now” kit mentioned somewhere in my readings. She called me directly at home and was very, very upset and wanted me to avoid such thinking, at least for now. Shit, she is wrong. But professionals rarely listen to the lay person. And that is another thing that Gawande talks about. Cool.

Jesus, I am running on. Maybe you should quit here even if I go on some more. Take a break. I would but have NOTHING else to do, but maybe pay a couple of bills. Listening to Janacek string quartets and wondering why I have been avoiding this recording for4717_1a344877f11195aaf947ccfe48ee9c89.jpg the past four years. Well, it probably became too familiar and I really don’t like things being that familiar. That is why most of the classics are just out for me.

—-UPDATE!——– Breaking News  ———-
Dr. S’s PA emailed me that I got approved for OFEV. What the hell is that? Well, in the simplest terms it is a cancer treatment that is also used for IPF. Side effects are bad, bad, bad. Bad all over. Even possible liver damage. Nausea and direahaa  etc. This is JUST what I have been reading about for Christ’s sake! Or my sake. So this would be on top of a list of pills that, well, is already pretty large. Are “they” going to make me sick to make me un-sick? I mean, well, you get it. Treat one discomfort by creating another. I am not happy right now.

——UPDATE 2 ———-
New nurse. Really sharp. Knows her meds and seems to very up on IPF as well. Was a bit concerned about my med regime from Dr. S. She did not know why I was not on a steroid. Very concerned that this cough has lasted so long.

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Author: estrayer

sociology - that's it, sociology

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