I Still Find these "Awareness" Things to be largely bunk

I have always been irked by the approach used by most charities and victimhood organizations.  Often, I would try to examine my aversion to their tactics and found it difficult to pin down.  For example, I think 5K runs are marvelous but I recoil on the self aggrandizement I see on the T shirts and in the rhetoric of people who claim they are fighting to cure something by walking or pouring ice on their heads.

My thought has always been, go get an education on the topic and do some real troubleshooting and experimenting.  People could have marched for days and days to find a cure for darkness, but the result would not have been a single light bulb.  It is a business.

Be that as it may, I always wondered, "What if I had that disease?  Would I feel differently?"  I guess not.

On the mpninfo.org site which is all the info and cutting edge stuff related to myeloproliferative neoplasms--f'd up bone marrow stuff---they announced that

September is National Blood Cancer Awareness Month

Yay.  Why am I not overly enthused?  No telling.  I guess I'd rather it be "Kick  arrogant, useless, pompous, disrespectful hematologists and oncologists in the ass month.  And punch them in the nose too!!"

 But, that is just me, I'm sure.  And maybe the doctors who go nuts because of the idiocy of their less respectful colleagues agree.  I know of at least one who does.  But he's in Iowa.  

So, part of taking matters into my own hands requires trying to educate myself a bit.  Believe me, I do not pretend to understand or even try to nail down the biology and chemical factors in minute detail.  I do try to keep up with treatments and diagnosis of specific subgroups among the bone marrow production disorders.  That is what myeloproliferative means.  

And I often worry that I am too resentful and hard on my hematologist.  But then I look at info from conferences and such, all listing symptoms associated with various conditions, or percentage of people in that group with particular symptoms.  This is the guy who said my symptoms were irrelevant.  And the guy who forgot that half the problem is anemia, and also did not order labs even though cell counts and such are the big deal.

For awhile I just wanted to ignore it and not think.  But then after that last visit, I saw little choice. This pompous caste system advocate from S.Africa would let people die before he would acquire enough humility to reasonably trouble shoot, or suspend his ego for ten seconds. 

But to the point.  Even though I have this rare disease.  It was rare disease awareness month or week not long ago. Geez.  Even though; I still would get no big thrill out of a T-shirt or people running around the block.  How about making it legal to seek any drug or therapy that you choose to try?  Things like that.  Get the FDA, which serves mainly to facilitate pharmaceutical wars between companies and the public.  If you are in then they help you. If you aren't then your product is forbidden.

Adults should not have to have permission to get pain relief.  As it is, many are in horrendous pain but have minimal resources and their doctors are afraid of various agencies ruining their practice if they just do the compassionate thing.  It is a sick, "Mother may I?" game that treats one set of adults as having the right to dictate and be the arbiter of other adults choices.  And the majority of people seem ok with that.  Just cannot help that busy body, pushy thing.

And again that brings me back to charities. Good cause or not, do not harass me for more money at the checkout counter.   Do not push and cajole me at work, making it like you are so holy for being a pushy charity cop, and anyone who doesn't like it is heartless.  Screw off!!  Nervy ass companies. You want big numbers for the charity?  Give me a raise or pay it yourself.  Maybe my charity is helping the poor family down the street buy the kid shoes.  Or food. 

I tell you, the big charity game is bunk.

So, we are all now aware that there are a zillion kinds of blood cancer.  Lots of people live longer than you will if they have the type that is well contained with certain dope.  Some people do not do so well because of sensitivity or something; they have bad side effects, etc. 

The thing is, you probably have worries of your own.  I do not care if you are aware.  What they should have is a month to raise awareness that you cannot be aware of everyone else's conditions of life, needs, or best choices.  That would go a long way toward improving stuff for all.

Anyone knows that there are more avenues of research which can yield useful results than one could ever count or know.  Often doing research in one area sheds light on some unexpected field.  Nincompoops and pretend scientists don't get that.

So, my theory is that my symptoms more closely fit myeloid fibrosis, probably secondary, but even in that there are inconsistencies.  The inconsistencies present with the polycythemia vera dx are consistent with the MF dx. It is crazy.  But even crazier if you are poor and limited in choices.  Believe me, the whole affordable health care debacle just lulls the poor and stupid to sleep while the bureaucracy of the allegedly free stuff systematically kills them off through incompetence and pure neglect.  A sick citizen is of little use to the greater good.  Believe me, eugenicists really are in positions of power.  And they are not always right.  

Sometimes they are, I guess.  

For example, a husband and father in my situation is way more worth helping than I am.  Assuming he is trying to help support and provide guidance and all that for his family, and carry his weight in the marriage.  But this system of pretend medicine will result in many like that falling through the cracks.  It is another part of the great pretense.  Like the fiction of "Hands up, don't shoot me" .  Never ever happened, but it became the battle cry.  Facts are no fun.

Some symptoms of this stuff are confusion, irritability,  and depression.   What a big surprise.  None of that here!!  

There's an MPN education foundation that has big conferences and a lot of Mayo clinic participation and such.  I want to hook up with those people.  This thing of floating in limbo is getting old.  

I am enthused.  I see now that the expensive bone scan can easily miss earlier forms of MF.  I think you have to be far advanced for it to show like that. But I guess no one wants a bone marrow biopsy.  Stick a needle through your hip and suck out some juice.  I bet my guy screwed one up and the patient got an infection and either sued or died, so he hates to go there.  I do not want it either, but there may be no other choice.  I hope there is another choice. Invasive procedures are...invasive.  

I rambled on and on.  But, at least it is here in case something ever happens.

You can be sure you may not feel much compassion from Dr Saven at scripps. And you will wonder if he even pulled the right file.  However in DeMoines, Dr. Shrek--yes, that is the name-- think I spell it right--is a real prince and very sharp.  

Bucking the Medico Madness

Ever since my last visit to Dracula the oncological egomaniac, my resentment of his methods and statements has grown.  I am given to delayed reactions.  It is my nature.  So, I just kind of puzzled over his attitude while there.

Then it downed on me;  if the issue he has stubbornly confined himself to addressing is the level of various blood components, why schedule an appointment without a lab to see if the new poison regimen is working out?  And, if a lab were scheduled and he has no desire to troubleshoot further, why bother with the appointment?  He can call and say to take more, take less, or he could say, "Hey, I pulled my head out of my posterior long enough to realize maybe I need to check for xyz, since my initial dx seems slightly flawed".

Anyway, I called his office and they claim to have put a lab request in and canceled the appointment.  I told them I was disturbed that the guy obviously did not spend even a minute reviewing my file prior to the last visit.  His questions were that of a person who could get someone killed by refusal to just look, double check, Think, for crying out loud!

If I had no symptoms why would I even be there?  I am one who doesn't look for problems and could care less what tests show if I am feeling well.  For a doctor to tell me symptoms from the disease or the "cure" have nothing to do with blood values is enough to get that doctor punched out.  This is why I never go alone any more.

I expect him to take great umbrage at me daring to second guess him, or catch his mistake about the lab.  It may be the death of me.  I can tell you that this bullshit subsidized care is such that they do what they can to kill you if it is cheaper than treating you.  I am not so sure I blame them, except they pretend to be cutting edge, best practice, best survival hope and they pretend in their PR to care.   That is the sickening thing, the pretense and the dishonesty, not to mention the offhanded arrogance coupled with incompetence.

I suddenly have a desire to fix this thing somehow, just so I can throw up the finger to the whole system and particularly those who are too dumb to know they are not the brightest people in the room, and they have no right to make people suffer when they could do otherwise.

Geez.  I know what I am sounding like.  Anyway, I think I have made a move that will either bring some worthwhile communication and action to the process, or I made an enemy out of someone who is not functioning as an asset or ally at this point anyway.

I know I sound like a broken record and someone who bitches all the time but I am not really like that, I don't think.  I am just still sick of this, and of the fact it can't be explained to someone in any way that makes sense to them.  Thank God for the internet at times like this.  Others have similar symptoms for a variety of ills, and others deal with the bureaucrats.  There are a couple of groups that have good info; AP--aquagenic pruritus, and MPN--myeloproliferative neoplasms.  Lots of cutting edge stuff from everywhere.

The common foe for many of these people is the ignorance and arrogance of medical professionals.  Then there are those who have really good luck with professionals in the field.  Those are the ones whose experience helps others find workable solutions to these things.  It seems that the Mayo, or Mayonnaise, Clinic is a good place to go.  Scripps, is hit or miss.  Many horror stories about being marginalized and treated like dirt.  I won't put up with it, so I at least won't be in the system going down the wrong path should they not come around.

I have an ace in the hole; a crack hematologist who will give full attention to all info I can give him.  Too bad he is in Iowa, but his letter based on initial data helped get me to this point.  His theories were broadly proven correct.

Also, I somehow managed to get a fair amount of the poison pill refilled.  Enough to last awhile. I am also not afraid to increase or decrease dose on my own based on various symptoms, and data, should the lab order actually be submitted.

I wonder what happens if I do nothing?  But I know.  Bummer. I prefer the do nothing option.

Lucy and Baxter

Once again, I am house sitting and baby sitting a huge white dog.  This is not Max the dog though.  He suddenly became affected by an aggressive form of cancer--bone, I think--and was put down.  The owners were so depressed they decided to just go to Ramona to visit puppies and such at the Great Pyrenees factory run by a woman who must like having a lot of dogs around.

This dog is Frank.  When they went to visit the factory, they said hello to all the breeders and puppies, then they encounter a three year old misfit who was a rescue.  They were all set to go home and come back another time until he gave them "the look".  So, the brought him home.

Frank is not normal.  I think he is an empath, or otherwise semi-psychic.   He began life in northern California.  My guess is that he was in the employ of rednecks as only this state can produce.  He kept running away in the last year.  The actual dog psychic, who has proven useful in the old vet office, even though no one would openly admit consulting her, claims that Frank was on a ranch or farm, protecting animals, and that they were either being slaughtered on site or otherwise suffering less than blissful lives.

He isn't exactly gun shy, but, especially at first, appeared to slightly flinch at times.   He just lays down and plays invisible.  Or he did.  Then if you show him some affection he kind of melts into it.  Very smart animal.  He looks you in the eye with a soulful, searching gaze, like he is reading your mind.  I like this guy.  He very rarely barks.

But he will go see who is coming and make sure they are OK.  No bullying people or creatures, but I'd want his 100LB self with me if someone tried to harm me.  He is subtly protective.  Hard to explain this creature.  I am sure he understands what I try to explain.

On walks, sometimes he just stops and waits until I look him in the eye, pet him and let him know he's OK.  Then he happily continues on his way.  The collar is so loose that it pulled right over his head the first time he stopped.  He looked at me seemingly waiting for me to put it back on to keep up appearances.  

I take my friends old 4runner and cart him down to Shelter Island for an early morning stroll.  Others sometimes have the same idea.  I have to wonder why people who have dogs that hate other people and animals bother bringing their aberrant pets somewhere where others have to contend with them.  Fortunately they are on leashes.  I do not hold to the adage that there are no bad dogs, on;y bad people.   Any thinking person who has been around the block knows that there are plenty of each.

Probably the same people with creep dogs are the ones who say that.  The cool goofs who hate their own species.  That still gets me.  Somehow those people think that hating your own species is a sign of intelligence.  Oh well.

Lucy was not one such person.  She was there with Baxter, a small to medium sized curly haired girl dog.  A nice gentle young pup.  Lucy, too.  At least I introduced myself while the dogs sniffed one another's interesting bits.   Somehow I don't think the idea escaped either of us.  Being genteel, shy folk, we settled for a smile and a nod.

Introducing myself is a sign that my desire to be more gregarious is taking hold, ever so slightly.

I will go back.  She was kind of cute, and may be as incredibly interesting as I am, and also may have just fallen down the rabbit hole, or between the seams somewhere along the way.  Unlike the hell lady with the shepherd pup.  She didn't have it on a leash and it ran to see Frankie.  He is very calm and polite to other animals.  She comes running and screaming, "not cool!!  not cool!" repeat ad infinitum.  All the while giving me a dirty look like it was my fault.  Her pup was too young to be a jerky shepherd.  Hey, many are.  Not all, but some. Inbred, or closet nazis, who knows.  So there was no issue. No need to panic.  

She grabbed the pup and ran back where she came from, after hooking his leash up.  All the while sneering at me in her hysterical, "NOT COOL!!!" panic.  I was waiting for her to call me "Mister Man".  I like Lucy better, and Baxter too.

Even though Not Cool was a cute pup, I think Hell Lady will see to it that he fulfills his maximum potential to be a hell dog jerk soon enough.

Really.  I would never say I am a dog person because I have encountered way too many dog owners who take no responsibility for their animals and use them as a way to inflict harassment upon others.  And if someone says, hey your uninvited dog tore my stocking, pissed on my baby stroller, made me wreck my bike, etc., all of a sudden you are the horrible, hateful person who abuses animals.

Screw that.  I don't keep animals bred to run cooped up in a little townhouse then pretend I am so compassionate and loving.  No those people are sick fuquits who have a passive aggressive streak larger than Fido's droppings which they pick up only if someone is watching.

Lucy and Baxter seem nice though.  She did not appear to be using the pooch as an alter ego.  And it is the type of critter that is fine in most environments. Indoors or out.  I will head down there again, but the condition of my condition makes me wonder if I can even entertain ideas of any sort of partner.  I can do things but need a ton of off time from most things too.

You never know.

Simple Goal

Due to the fact that it is way too late for most things I would consider worthwhile for me to do or find, I  have drawn my goals in a bit.

All I want is to be streamlined neat and organized in house and vehicle, and be nowhere near anyone when I die.  Unless I had someone I wanted to be with at the time.  As it is, I want to be far from humanity when I check out and leave no mess, and no confusion in my wake.

That is it.  But for some reason, achieving that minor bit of normalcy--something taken for granted by most people--is almost impossible for me.  It makes no sense.  I'm referring to the reasonable handle on clutter, mess, and paperwork, not about being off in the wilderness when I kick.

So, maybe I will get it done.  I am getting angry enough to fight the fatigue factor some, but dang.  Just an hour or so yesterday at work and bammo--the skin attack.  Comes over like a rush but lasts a long time.  Not much fun.  I wonder what is what with that.

My doctor resentment is a thing I am trying to subdue.  But I need to take it into my own hands some because I am sure we have this thing figured incorrectly, or he does.  He is half right.  But if we do not get on it soon, I am pretty sure the dominoes will fall at an accelerating rate and there will be no return.

I just don't even know how to begin.  I know I am becoming less sensible and able to decently communicate.  I am way edgier than is normal.

Some guy was making a big deal about how people ended up in line at a convenience store the other day.  You know how when it all of a sudden backs up and the main aisle gets blocked, and all that.  So he says, "hey how about helping me fix this and line up over here!  He was behind me, and I was kind of at an in between spot by a little island of goods, and the person ahead of me was my friend and she was involved in telling me something.

So the guy, who was nearly a head taller than me, starts grumbling again about people lining up wrong.  I tried to defuse it saying the design didn't lend itself to big lines.  They usually don't happen for long.  He grumbles back, "There is nothing wrong with the design, people just have no brains, blablabla."  I did not consider him very bright and I was sick of it already.

Soo...I finally look at him and say, "Yes, you are right, we are all so fucking goddam stupid. You are the only one who is bright. We are just too fucking stupid to do it your way!!"  And I was perfectly prepared for him to attack if he wanted. I just did not care.

He shut up and mumbled under his breath, "No argument there."  And I mumbled to my friend, "I told you, the California redneck is in a class of its own".   Then I offered him to go ahead of me and he refused.  Both of us not being at all polite in tone or manner.

He was a jerk, but what the heck was it with me?  I just do not care sometimes.  And I am tired forever of know-it-alls who spend all day trying to find reasons to prove their non-existent superiority.

This keeps up I will probably punch harmonica John in the nose next time he says some rude arrogant BS. Everyone thinks they know things regarding others, and maybe they do not.

Time to seriously try to find that parasail and learn how to fly it.

Little Adventure

So, Sande and I decided if we could find some new place to play tonight.  Karen is out of town and we did not want to go anywhere and seem the same old faces.

So, she researches on line and we hit a place on the edge of downtown.  Odd neighborhood right off the trolley line--a fact to remember for next time.

It was some sort of open mic deal, but they had bad equipment.  Nice little stage and mic stands falling apart, one broken mic and one working but barely staying put.   We made due with that.  At least her guitar has a plug in and that was serviceable.  I just projected acoustically and got on her mic for the solos.

Little glimpse of stage area when place was empty--before we packed it.   The mic on the right fell apart in my hands and was inop.  The stand fell apart too.  Wish I had a pic of the crowd when the place filled.  It is small so only about 30 people, but that is actually a lot sometimes.  The night was a victory of sorts.  And really kind of a surprise. 

We started playing and there were just four or five people, at most, in the house.  By the second tune the place was packed.  And it stayed packed until we were done.  Homeless wanderers stopped and stared in.  The doors were open so they could hear, plus there were some tables outside.

The cool thing is that we did not know these people, and they were mostly in their 20's and some in their 30's--maybe.  And they liked it.  Anyone who thinks people in 30s and 20s do not know anything about music and all that are wrong.  I would say my peers, who are stuck in the 60s and 70s are the ones whose musical sense and evolution is stifled.

My God, Viet Nam is over, get a job and shut the F''' up!!   So to speak

Really, this is where I part ways with so many; I do not pine for the 60s, for the flower power whatever.  I do not pine for demonstrations and woodstock fantasies.  I never did like obscenely loud music.  I never did like mass groups or collective nonsense.

I'm a creature of seams.  Neither did I think most of the protest people had a clue, nor did the reactionary idiots pulling in national guard on campus fools, or lining up police with rifles fitted with bayonets.  The latter happened at FSU.  The alleged demonstration was more a gathering of people looking for pot, sex, and the entertainment of the spectacle.  I think it was a demonstration against ROTC on campus; the usual thing of collectivist types interfering with the choices of others.  No one forced people to join ROTC, though the draft was a motive.

So, there I was; despiser of the draft, disgusted with the sheep mentality and ignorance of my peers.  A bunch of parrots who had no idea what the totality of the facts were.  No inkling about the Constitution or much else.  But if you did the parrot thing and smoked pot, and did the hippie appearance---instant acceptance!!!  Alone no more, and relieved of the burden of thinking for yourself.  Big relief to many.

How did I end up here?

So, this was a successful experiment.  We did play the element of surprise a bit.  I knew if we acted mild mannered and unassuming, they'd figure these old weirdos would be playing the usual Neil Young, or "The Cruel War is Raging" or other protest crap.

We did originals and one killer spanish song from Argentina.  Sande lived in Spain for a few years speaking only spanish.  I love that spanish melody junk.  Hits me where I live.

This is how we quietly make waves.  Also looking forward to playing with Chris Hamilton band at Mt Laguna on the 19th.  Up on Sunrise parkway, a two lane road in the Cleveland national forest.  Only one venue up there.  I will take a break from another stint of house and pet sitting.  This time with the new great pyrenees, Frank.  Now Frank is one smart and cool creature.  We hit it off from the first.  We miss Max, but Frank will be a little easier because he is highly telepathic and has a high IQ as well as plenty of integrity.
More on that later

#1 panderer and demagogue ever

Maybe not ever.  Maybe Steve Cohen is just very adept at following the tradition of pond scum pandering, agitating politicians.

For some reason I am on his email list.  He's a democrat out of Memphis and since he can't run on the "I'm Black, therefore you have to vote for me or be a racist and traitor to your people" platform, (which most Black politicians do in Shelby County--even against others of their race),  runs on the "I'm not Black, but I'm connected and would stop at nothing to buy your vote by any means no matter how low, dishonest, etc."  "I have pull and will rain federal dollars on the 'hood and even pretend that this majority Black city, run by Blacks, is racist and you are all victims forever.

He is unbelievable.  I cannot believe the people in the 'hood would vote for him. He's a snakey, sneaky, slimy creep.

Check him out.  If you are a progressive even, and honest with yourself after reading his stuff and checking him out, you, too, will want to vomit and hide your sister.
the end

In Demand. yay. Let me Tell You Bout HJ

So, there is a long time resident of SD county who is probably not far from my age.  Old, in some books.

He fancies himself, "Harmonica John", and is a big wheel in the organizing of the yearly harp fest in La Mesa.  I think la mesa. Can't always tell where El Cajon ends and other names begin.

Anyway.  People who did not hang in the blues circles and such would call me Harmonica John when I first got here.  I discouraged that.  Since my facebook is under an alias I told them to use that name when they needed to say something in public or at a jam or whatever.  I explained that 1. I would never fancy myself the only John somehow connected with stupid harmonicas, and 2.  that there was cat around town calling himself that and I wanted to avoid the mix up.  Besides, he was here first.

The guy is a very good player but not a ground breaker.  I find him to be very good at what thousands of blues harp players try to play.  Nice, but not really original.  But good.  And he's a pompous $%^&*head.

So, now the marine is back wanting me to play and has streamlined that band, much like I am encouraging Sande to do.  Just makes sense for our likely venues and if the bass is iffy for gigs and can only practice sometimes, do without.  Last gig was only the three of us, Guitar and vocal lady, viola lady, and me.  It was far better than most outings.

Anyway so there are four separate acts who want me playing with them.  That is great.  Now, I do not hang in blues circles or harmonica circles--often the same--since I arrived.  Just not into it.  And not into most of the people.  The ones who don't have to play 50 year old tough guy with all the usual affectations. Or any year old tough guy.  It spans generations.

For some reason though, Harmonica John seems to feel threatened.

I posted an old Memphis video on FB for the benefit of the marine and his girl, because they were curious.

So, they have something nice to say and HJ immediately wants to critique, as if he is the ultimate.  "Well, you are better now but blabla decent then."  ??? No one asked.  I found it nervy and offensive but you do not defend or you give the pompous something to feel ego fed over.

Ha. But then others jump in.  Sande said I was a God.  oh geez.  among other nice praise.  He has to answer, "Well, I wouldn't go that far..etc."  Saying his idea of a god and hers were different. It is crazy.  He is known in this area and I just play without promoting myself much.

Anyway, I tried to end it at the beginning by just saying WTF Friday. Zip..over the head.

So all this god stuff happened and I finally said, The men don't know but the pretty girls understand.  Haha. That shut him up.

He is right, maybe. I think I am better now. Different anyway.  By necessity.  But no one asked.  Should I say he has great tone and technical skill but lacks punch, excitement and originality?   No, I should not.  You didn't ask. I pretended you did.

It has taken all my life to believe that any seemingly competent person would be threatened or intimidated by me in any field or endeavor.  Finally I realized that some people always think they are in competition in odd games that many people don't even play.  But, even smart people can be so screwed up and egocentric that they become petty and small minded.  All in an effort to be elite and superior.  Problem is they freak that maybe they convince no one, or that their competition does not even care.

 Maybe more playing will be good, and more of it will bring in a little bit of cash.

I need every dime and every thread I can touch.  Unstable and screwy times
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Never Say Die, (except when appropriate)

It grates on me whenever someone says something like, "never say never".  They just said it!!!  Twice, for cryin' out loud.

Never say die?  OK.  But what do I say instead?

Thank you, Powers that Be, I suppose...

Or the old one about, "You know when you assume, that means you make an ass out of u and me."  Utter nonsense!!  These words exist for a reason.  You assume things all the time.  You assume that bottle of water is not really hydrochloric acid, for example.

And never has its place.  Just like always has its place.

Another case of people being smart enough to sort of understand, but not quite smart enough to really get it.  But they think they are way ahead of the game, mentally.  It happens.

It pays to know that you may not know it all.

What I am thinking now, though, has little to do with that.  I have been doing some mild checking on this physical stuff and I definitely think part of the dx is erroneous, and I think another test is needed, and I have a feeling I know what it will reveal.  In a way it may be more serious than the erroneous part of the present diagnosis.  However, I think that it is likely to be curable with some kind of stem cell hooplah.  Whether I am a candidate is another story, but I see no reason this cannot turn around.

To say anything is incurable is stupid.  Maybe they do not presently know how to cure something, or maybe a particular medico is behind the curve on new therapies and cures.  No true scientist or competent trouble shooter would label a problem as unsolvable.  Not yet solved and impossible to solve are two different things.

It is crazy that people with conditions which leave them very fatigued are the very ones who most need to take charge and protect against lazy or incompetent, or arrogantly unconcerned physicians. But that is the name of the game.  It is good to bring a level headed friend with you so you don't ransack the office or beat the doctor senseless with stethoscopes and other weapons which may be handy.  That is what I do.  And it has kept me from flying right over the edge a time or two.
'
But now I have a plan, and I have resources which will help guide me.  Mostly a very dedicated and concerned hematologist way over in Iowa who has offered to review any lab results and such.  He is one who helped in the early stage of this game.

Oh, so now it looks as if I will be playing with Chris Hamilton band some more.  He's the ex Marine sniper.   He and his girl Emily and Richard Resonator are playing the only place in Mt. Laguna and that is just fantastic.  Super cool venue.  And now they invited me to come join them.

They have figured out that it works best around here to streamline the deal.  It is hard to get bass players to commit or show for practice anyway.  Sande and I are running into that, as well.  I think we do better just the two of us, or us plus the viola, Karen.  Looks like my thinking is swaying Sande on this.  Chris, Emily and Richard have figured it out too.

So, in the next couple of months I am playing with Sande and with Chris and them, and with another guy.  At this rate I will be a fixture at Hard Rock Cafe.  All three are booked there.

The trick now is to find some energy.  I am working on it.  I can hide it when I play, but if I were to actually hang around with people it would be very hard to hide the fatigue and discomfort.  But the more I learn how, the better off things are.  I do not have much concern about the stuff except that fatigue can prevent activity.  But I always think about things as if there is no issue. Only when I get up to tackle those things and find it way more difficult than I thought.  Or maybe not doable at the moment.

There is too much of what I call magic in life to "assume" the worst is a foregone conclusion.  It simply is not.  Especially in my case.  And I have a vague plan for the best of futures, and the shortest.  Bases covered.  I should found an institution which teaches scientists and doctors how to be decent trouble shooters and how to leave their egos at home.  And make them pay me big bucks for putting them in their place.
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Yikes and stuff

It does get old finding that not too many people can follow a sentence this long.  And not many can properly interpret even that basic level of complexity.

I'd say it is not their fault, but much of the time it is.  That is because people refuse to step back and accept that, sometimes, what they want to be true simply is not.  Greed and cowardice fuel the purposeful ignorance as much as anything.  Fear of not being part of the herd, and ignoring truth as a result, is cowardice in my book.  Much more so than suicide.  Odd juxtaposition. But that school which calls suicide cowardly is pure ignorant BS.  It annoys me.

But the refusal to see reality out of belonging to some team or because it gives you a way to be accepted is sad.  But maybe it is the smart thing.  Either way people freak when their treasured illusion is revealed.

I think a whole slough of people suffer that in the case of Obama, as just one example.  Everyone wants to believe he is not owned by big money and is totally above board.  If confronted with any duplicity on his part, they immediately shout, "but, right wing!!!! but Bush!!!!  but Republican!!!", etc.  It would be funny if it weren't so bizarrely scary.

They fall for the idea that you must pick one of two teams.  Which of the establishment's choices do you like?  Any flavor you want, as long as it is chocolate or vanilla.

I have rarely seen anything like it.

People often ignore the context and qualifiers of a statement so that they can ignorantly go off on someone.  Often me.  Makes me think I should have read the book by Glenn Beck, "Arguing With Idiots".  I love the title, and remember seeing the cover in airport shops.  The title and cover were great, no matter how one may feel about the author.  I can identify with the sentiment.  (I'm pretty sure it goes of on a tack which is not what I'm after here, but that is irrelevant.  I like it for the pictures.)

As soon as you see yourself pulled out of context for what appears to be the pleasure of your antagonist, who obviously loves to do verbal battle for the sake of the battle itself, you know the conversation will never be more than an unpleasant waste of time.

I've known people that counter logic and proof with things like, "That's your truth, not mine", "There is no absolute truth, everyone's reality is different", etc.  Or, "Oh, that's your logic.  I'm more intuitive."

Great.  So you learn to get along with dimwits and to avoid constant conflict, you begin to dumb yourself down.  It is a mistake.  Put up with the arrogant jerks who feign an air of superiority, and smash them. At least you will have a higher level of discourse and self esteem.

Or you may find some like minded people who can accept new information, even when it bursts their little bubble of preconceived belief and such.  Once in awhile I wonder what I got myself into. I can almost visualize what's what, but not for long.  Some false narrative runs in my mind which has always ensured my obscurity, and poverty of sorts.  Much to the pleasure of some, I fear.  Not that they would all admit to such sick and sneaky sadistic pleasure.

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Back in the Fight, or trying to be

This serious depression issue is a nuisance, to say the least.  I know it involves a lot of lies which cloud the mind, but it takes a lot not to feed and believe the destructive pronouncements which run through my mind.  People deal with those things.

Life is a lot of adjust and adapt and compensate for the weaknesses.  Deal with it.  Just how it works. It is not a thing of being a victim really.

That brings me to my resistance to people being described as victims of hurricanes and other incidents in nature.  Come on.  Humans are made to find ways to steel themselves against the hostile environment in which we live.  That does not make us victims. What a stupid outlook.  If we are victims for living on earth then what is the alternative?  Things happen.  It is all physics and such and alleged scientists do not know it all. They know it some.  The ego bound doctors and scientists of the world want to halt advancement right here because they are lazy, arrogant, insufferable creeps.

Really adept scientists and doctors are not fearful of what they don't know.  They like to learn and convincing you of their superiority is not job 1, like it is for my hematologist.  Soon, I expect to can this guy.

For awhile I was so sick of this whole semi-cancer issue that I quit looking into it and all that.  But I cannot let it go because when the blood levels are left on their own, I get the itching attacks and such.  With or without treatment, fatigue is the norm.

Anyway, I am almost sure the dx is slightly off.  I will annoy anyone reading with initials, which I hate, but I don't care.  I do not think PV makes sense.  We are solidly in the realm of myeloproliferative disorders. Bone marrow malfunctions.  There are different ones.  I just don't think it makes sense to dx a disorder which is characterized by too many red blood cells when the count is normal or low.  And when anemia is a marked issue.  All that is low.  Other stuff is high, and I am thinking we need the bone marrow biopsy, even though I have avoided it.

But this crazy ass doctor is not who I want doing it.  He doesn't even read the file, and he ignores every symptom I describe, claiming those things are "separate issues, not related" to the blood troubles.  Wrong.  They are directly related and something is being missed.  I am almost too tired to care, but fortunately I can get enough anger going for some adrenalin to kick in.

Rational anger.  The kind that is measured but is based upon logic and solutions and lack of tolerance for ego bound, pompous nincompoops whose insistence on maintaining their superiority could cost years off your life.  I won't have it any more.  This is why I bring my good friend the ex trauma nurse with me.  Otherwise I might explode and end up in jail.  Seriously.

How did the medical world turn into this?  Oh well, lots of people manage to benefit.  And the ones who die aren't around to complain.  But, believe me, having a rare disease is very risky when you have a pompous egomaniac for a doctor.  They are too closed minded not to kill you before getting it right.

Being poor, depressed and sick make it difficult to get in front of the curve, but I will.  If I happen to die as a result of these creepy guys I hope their names are smeared by my friends.  Right now I will say, do not go to Dr Flores, internist or Dr Saven , oncologist/hematologist.  I want to punch both of them right now, or else get my money back.  Maybe in another life they'd be great, but the bureaucratic mess has brought out their cowardice in the form of arrogance and disrespect.  Afraid of being sued for being creepos who do not know it all.

Geez.  Doctors whose number one goal is shielding themselves from responsibility get no respect from me.  I've had it.  But I have a plan,. so we shall see.