Thursday, September 28, 2017

Trying To Fake It; we're dropping like flies

Probably due to the power link boondoggle in East County, and no telling what madness in Miami, ...
never mind.  I decided to not follow that tack.

I wonder if the people I play music with have any idea that it is actually painful much of the time lately.  I've done a lot of faking and finessing.   I think what happened is certain blood things are too low or weird.

Trying to be a good citizen I attempted to call my primary care physician.  The lady I talked to, some kind of tech or nurse, immediately books a pulmonary specialist.  All this is Scripps.  I wonder out loud if it would be a better idea to get the hematologist in on the act, or at least my general purpose doctor.  I don't think the tech even knew who she was.

That seemed dumb.  They have a pretty good website for keeping track of tests and appointments. so I went that route.  Sure beats the odd phone process.  After replaying the hone call in my mind, I canceled the pulmonary appointment Who was that chick and why was she avoiding my regular doctors?).  , and sent Dr. House a message saying I was going to cut down on the med if I didn't hear otherwise because the shortness of breath thing is way out of hand.

I call him Dr. House because he is about as openly sympathetic and understanding as that TV Dr.  And I liked House.  I like this guy but it has taken 3 years to figure out how to keep him in line.  This is the most concern ever for symptoms.  Glad he's in the loop.  I don't necessarily think it is pulmonary.  I think we got our this and that levels to off.  Anemia and if I took iron supplements the world ends.  Maybe. He says don't take the iron.  OK.

I can't believe I was slated to go help my friend who was to have an autologous bone marrow stem cell transplant.  They find enough of your own stuff to rebuild the bone marrow.  He has multiple myeloma.

Soon enough I was shown the error of my thinking.  I am in no position to help even for a week.  The whole thing snowballed the week I was feeling better than I have in at least 3 or 4 years, on my recent Texas trip.

I heard of his plight and wondered if it would be possible to visit while he was in Houston.  Next thing is I am asked if my offer to help was still good.  It just went on from there.  It's crazy. I have MPN issue, another long time friend has some thing to be removed from a lung,; not benign but encapsulated.

Everyone looking at the exit.  Nuts.   I have to get the place cleaned up and put other stuff right so the government doesn't make life hell for relatives.  By the way, there is a big difference between democracy and liberty.  We do not have, and the sane among us do not want a democracy.  Those are the lovely folk who do things like charge money for you to exit.  Annoy the survivors.

OK.  Anyway, it could work out that I take less in the way of stuff to retard cell production.    I just hope no itch/pruritus returns and this feeling like muscles aren't getting any O2 goes away.

We have three gigs in two days this weekend.  Sat midday, Sat evening, and Sunday afternoon.  Sunday is the big deal.  The local newspaper in that neck of the woods wrote a big article about us.  Very nice.

But when you get winded walking out the front door, down three steps to a car 8 feet away to retrieve your phone, or my phone, in this case, something is off.  Does not feel like the winded I would get from smoking or congestion.

I still say the best approach to medical issues, when you have the option, is to ignore and deny and wait for the malady or annoyance to fade away.  9 times out of 10 that works.  It does for me.   If it won't go away, drop all your preconceived rules and notions.   Finagle insurance or treatment one way or another.  It may take some hard to find out of pocket, but if they are concerned they will help.

But you cannot get there if you only sit there imagining every reason why you can't get it done.  You are trying to demonstrate your intelligence in an "I'm a hopeless victim" sort of way to play dumb, .  All your objections are no doubt real.  You have to play dumb; be ignorant.   Much involves shutting up at right time, and letting them know you are strapped at the right time.

I was very lucky because Dr. Lopez invited me to be the subject of study for about ten physicians overall.   This was back when slight sweating or being splashed with water set off a horrible dynamic itching which showed no welts and scratching didn't quite get.  Like ants running all over your arms and torso and legs, but different.  They directed me to the hematologist after numerous blood tests and observation of symptoms.  Twice they had me in for their conference.  They hold it after normal work at a private practice.  Often it is for people who can't otherwise afford treatment, and for weirdo cases.   Imagine the equivalent of 20 exams for free.  And by the best in town.

They would examine, make notes, send the patients home then discuss the cases and arrive at a general theory.  I spent out of pocket for office visits and blood work.  The I asked an insurance broker how the whole buy-or-die ACA deal worked.  I was on highly subsidized insurance for a time. I faked earning enough that I could pay 125/mo and have tons of choice.  Had I gone the free stuff for those making less than that amount, they wouldn't allow me to copay, and wouldn't allow me on the plan that gives choice.

I believe the free stuff is a trap.  You go their HMO style routine and you will most like die if you have a progressive chronic disease that can get really bad quick.  I bet they'd still be trying to feed me steroids and allergy meds.  It pays to pull that couple hundred form somewhere if you have to.  The hotshot I went to, referred by the well-to-do,  cut it to $100/ visit.  The conference stuff was free.  The blood lob charged extremely low rates for what I expected.  Not everyone hates poor people;  just those who claim to be the saviors of the financially challenged.  Those people are not your friends.

Anyway, I realize this could either blow up unpleasantly, or it could smooth out as it has done on and off through this journey.  Even winded I can do much I could not do a few years ago.

All I care about s not leaving a bunch of junk and work when I kick.   On days like today I think I better hurry up, just in case forever is nearer that it appears.


  1. I doubt it's relevant, but in my case the SOB was caused by my gaining 50 pounds when I quit smoking. I could not climb stairs or tie my shoes without a break between left and right. When the weight disappeared, so did the SOB. Good luck to ya in any event!!

  2. Bummer. Hope they can do something for you quick.


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Ballistic Mountain, CA, United States
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