Yay, September is Blood Cancer Awareness Month

I have been improving over the last year, but not always.  My energy level peaked when I was in Texas, but began to wane, even before I left.  Still it is better overall.  Mentally, and I suppose emotionally, I am a mess.  Who cares, you can change your own mind easier than physical malfunctions.

The MPN people sent out an email discussing the reasons why re awareness, I guess.  People always talk about awareness related to this that or the other.  I generally scoff and become annoyed. Great, I am aware that wars are rarely what they appear to be.  That sure helps. Not

BTW, MPN means myeloproliferative neoplasms = bone marrow malfunction.  Got a mutation and blablabla.   ET is what they settled on for me after first thinking PV.   ET= essential thrombocythemia---more platelets than is good.  Way too many if unchecked.   PV polycythemia vera= over production of red blood cells.  Those are simplifications.  Lots of overlap and that sort of thing.  Biological stuff is like that.  Messy, with vaguely defined parameters and boundaries.

Here's the first part of what they sent.   I have no idea what friends and family think. It is not that relevant.  I am the one who generally refuses to believe I have any other problem than that I am a defective, weak minded person, and I imagined all this.

Deep down, I do not think I have a disease, I think I am just no good and can't manage to live a good life like most or some people.

Here's prt of the mpn outfit's message:

What does an "awareness" campaign have to do with PV, ET or MF?

Dear (My name, which I will pretend you do not know)  In a few days, the  month will change to September, which is recognized nationally as Blood Cancer Awareness Month. While you are already aware of MPNs, or myeloproliferative neoplasms, there are many factors indirectly but adversely affecting people living with Polycythemia Vera, Essential Thrombocythemia and Myelofibrosis. A few we hear from patients frequently are Friends or family not believing they are "really" sick or have cancer Insurance or disability denying coverage or a claim Problems getting medication, either because it is too expensive, their deductible is too high, or the medication is not approved for MPN No suitable clinical trials for their diagnosis of PV or ET No way to prevent progression (Since I am doing well on the cheapest, easiest pill, Hydrea, I have had no coverage issues.  I have not sought any sort of disability or any of that.  Not disabled. Especially now.  Far worse 2 or 3 years ago.  Medicare and others play a game. If you let them they will screw you.  It is how they max profits/cut costs/meet budget.  Certain things they flag automatically  hoping you are too sick to argue, then you die--problem solved>  And therein lies the biggest question over single payer---will they actually be more dogmatic and arbitrary, leaving you less recourse than you have now?  I said it was a question. I don't know. Sometimes, I don't care)

Here we are playing heart of Georgetown, TX.  We drew and held a crowd.  I am on far right. The fiddle and I were getting used to one another.  He is stellar.


They go on:

These are problems being addressed by the MPN Research Foundation and other advocacy groups 12 months of the year through education, research funding, and advocacy. Although a month of awareness won't resolve the issue completely, it is a good opportunity for us to work together toward improving the lives of people with PV, ET, and MF. Here are a few activities you can share with friends and family during September to spread awareness about MPNs:...

That's end of them and what follows is my point of view.  I left off their list of things.  Not making an MPN-centric twitter profile pic.  They actually have it, you just click here and there.  I do not do twitter. 

In that I am trying to lead by example.  It may take time before enough of the country follows that example.  Especially elected officials.   Twitter would improve if they banned politicians, 501c and any other blatant power vehicle.  I probably would still ignore it.

               In Texas in early August.  There is absolutely no way I could have done this 2 or 3 years ago.  Even a year ago, I think.  It would have resulted in a pruritus attack like you have no idea.  Unless, of course, you do.  Seriously, a big step.  Other factors, too, besides the intractable itch attacks.  No hives but feels like attack of hyper active ants running all over.  That day was energy peak for last year or more.  Now I wonder how all the big houses built up high on the banks fared with all the flooding.  This was closer to San Antonio, but rivers don't always care.

OK, I am not doing the social media and battery of links they have in their message to me.   If anyone cared to look it up they can go to mpn.org or other place.  

The Houston flooding will influence some of the ongoing research and upcoming stem cell transplants.  

I think Houston has a nit wit mayor, like New Orleans when Katrina hit.  Maybe not as bad as that, but still a nit wit.  The governor of Texas seems competent in this scenario.  Plus the people of Houston are less dimwitted overall than New Orleans people were.  Like it or not, they were dumb as rocks.   People try to blame Bush, but the governor and mayor involved with Katrina were absolutely incompetent, negligent, and too stupid to know they were worthless.  Remember footage of even the cops looting?

Oh well.   This really sucks.  I can only hope that Spike Lee doesn't get involved and try to make another natural disaster into a racial issue.  Those people ought to have enough money by now, so playing on hate and fear and lies should be a thing of the past for them.  Give it up race fanatics.  You are dumber than you think.

OK.  Sande, the lady in whose band I play, won the Western Country Music Assoc. entertainer and vocalist of the year, in her age category and for female.  Genre was called "new country".  Despite all the categorization it is a big win.  She goes to Nashville vicinity for nationals in March.  I guess that is probably a solo adventure, as was this round.  No telling, I may be in Texas by then.  Hard to say.

I'd just like to go see what those people think of what I do.  So, if I had a chance to go, and maybe back her on a show or even open mic at the Bluebird, I'd like to try it. I think I taught her everything that scored her these awards. Two trophies, vocalist and entertainer. 

I bet hematologists and oncologists just made up the whole mpn deal.  They didn't used to know what it was.  I guess the test for chromosomal mutation is their tangible proof.  It is bogus.  Or could be.  Easily.  Something that people can live with for years.  Somewhat active years.  So, my guess is that it is a designer disease.

That's OK. Pretty sure blunt force trauma, resulting from something stupid I may do, is much more likely to do me in than this nonsense.