msb-0092 Uh, I won... Holy crap I won!

msb-0092 Uh, I won... Holy crap ... I won!

Feedback comes first so...

Thank you Miss Chris for your sentiments on the last episode: "msb-0091 Serious Sirius Christmas Fantasy". (Go to the blog and read the comments if you want to know. But, yah! I am da man! :-)

Brain Cheese seems to be under the weather, as does Friday's Child, or at least her partner, so go over and drop them a note of encouragement.

MDMHvonPA will shortly be regaling us with his roundup of the blog-o-sphere.

I gotta tell ya, it takes me a long time to record those because I'm always cracking up at some point or other.

The expressions and "tour de phrase" he uses are priceless. Sometimes I'm trying to read his stuff for the tenth time, and I'm still guffawing.

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Onto other news:

The "Your big break! Be a Sirius DJ For a Day - For Charity" contest didn't quite turn out the way my life usually does.

Uh, I won... I won! I won? :-)

I'm still waiting on Mark Yashimoto Nemcoff to get in touch with me regarding the money (My credit card paymentwon't go through? Should I send a cheque?)

I'm also hoping to get an MP3 that I can actually use from "Don Lafontaine" (The man who's done all those "In a world where ..." movie, tv shows, tv ads (Geico is the most memorable one,) and radio promos. [ http://www.donlafontaine.com/ ] :-)

"In a world where disability strikes 10 per cent of the population,
only one man has the guts to take on the powers that be,
and raise his voice in a challenge to media demagoguery
and the tyranny of the mass market.

That man is Charles Rovira and he can be heard at MSBPodcast.com."

That would be "sweet". (I'm also dying to find out what is that mike is that he uses [the picture is on his site] :-)

But I'm going to "Be a Sirius DJ For a Day" this January. Yay!

Sirius have about 6 million listeners.

After doing some math, like who's listening at specifically that time, I figure that works out to maybe 50 MSers who might catch the show, maybe. Maybe I'll be able to pick some of those up.

(Then again, who knows if there might be some potential advertisers listening.)

We'll see if I actually reach some new MSers with this show.

Woo, hoo...

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I'm also commissioning a cartoon figure of "Ixy" walking around with a red cane.

"Ixy" will be my stand-in. Complete with my red cane.

I figure it's got to be more appealing, representing us coping with MS, than "Larry the Lesion" representing the disease of MS. (Google for "Larry the Lesion" and you'll get to "Mandatory Rest Period" [http://www.todmaffin.com/blogs/ms/], Tod and Kim Maffin's more medically oriented MS web site and podcast.)

Tod and Kim Maffin tread where I don't want to go. Mostly because I'm am "not" qualified.

What I "am" qualified to do for us MSers is to listen to any and all of us and to put out some entertaining shows, while opening the door to information we do need.

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Here are some facts about me:

My IQ is in the 150s (Sure, sure. So why do I feel so stoo-pud. :-)

My cholesterol is in the 160s.

My weight is in the 170s.

My height is a meter, 80. (okay, okay. I may be, uh, stretch-ing, it a bit. :-)

And my health, in general, is excellent.

Apart from the sclera affecting my motion, I'm in the absolute pink of health.

So why do I live with a constant, nagging sense of dread?

Why do I keep expecting to hear the other shoe drop?

Its part and parcel of being a realist, I guess.

I always remember that "In to every life a little rain must fall" and, just like buying mutual funds where "past performance is no indication of the future", I have been hit by a shit load of, uh, shit loads.

But that doesn't mean that I'm suddenly due for a turn around.

Life doesn't work that way.

Only Goofie, down at the entrance to "Disney World", sings "Oh, the world owes me a living..." and only a two dimensional cartoon character could possibly believe it.

Lets look at the economics of the situation with a sense of social as well as fiscal responsibility.

According to the W.H.O., the World Health Organization, 10% of the world is disabled. (http://www.who.int/nmh/a5817/en/) (I'm quoting some real world facts so you don't think I'm just pulling numbers of of my ass.)

That's about 600 million people, six hun-dred mill-ion people, of all ages, sexes, races and cultures. (That's twice the population of these United States.)

Right now, we're ignoring that ten percent of the world, for their consumption, and still paying out ginormous sums in health care, which is:

• health insurance, (companies which make sure that they don't pay out because that impacts on their bottom line,) and
• health care providers (also companies which make sure that they don't pay out in drugs and services, because that impacts on their bottom line.)

Meanwhile we, the health care users, are getting the short end of the stick because we're immediately suspected of malingering, and then, to add insult to injury, we are prevented from contributing except as guinea pigs.

That is so stupid, short sighted and wasteful (and I hate wastefulness. I regard it as a personal offense to my sense of parsimony.)

To combat this attitude, I am running this podcast.

It can be a boon for the drug companies and the other paraphernelia and service companies.

But, it can be an even bigger boon to us MSers. We can find out what is out there for us.

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I went into a kind of denial after my recoveries from my two first episodes...

I lived in blissful ignorance of MS for almost 15 years after my first undiagnosed episode, and then for another 15 years until I had a third relapse and had to learn to cope with walking with a cane, and by then denial was "not" an option.

And the mass media was an unwitting co-conspirator in my eventual disability.

There were no media outlets for information about the disease and the treatments that could have abated it.

It was "far" too easy for me to bury my head in the sand.

If there had been a show like this, one where I could tune into and they weren't depressing my ass off with jargon and terminology, I might have taken better care, appropriate care, and I might have prevented my having to use a cane to "schlep" around, slowly.

What made me attractive to my employers over the years, my brains and my ability to use them, are now hampered by what has happened to my body, and to my central nervous system.
(And once you fall off the radar ... well, you've fallen off the radar, haven't you.)

But I'm no less intelligent (and neither are all the other MSers I've encountered in the blog-o-sphere.)

But human beings rather waste what doesn't fit in, wouldn't we, rather than just "listen" to any ideas from those who no longer fit in.

Well this is "that" show, and hopefully the first of many, where the square pegs start, not just moaning and groaning, bitching and whining but start to contribute to the wider discussion about what can be done about us (beyond Hitler's "final solution",) with us and for us.

10% of this country is not making it and 5% of this country can only make it part of the way, part of the time, because the rest of us, the 85% of this country that are not currently disabled, are not asking what we 10%ers, and what we MSers, 'can' contribute.

We have brains and we have experience and we are 'not' being consulted.

We are rarely seen and we are treated like shit because this country has never known what the Hell to do with anybody who is 'other.'

Yes, we are 'other.'

Stop being scared of our differences.

We aren't Martians.

We won't come down from outer space to molest your cattle.

We aren't a drag on the economy, unless your economy isn't being 'realistic'.

This show is about injecting a little reality into all our lives.

And I'm not going to sit here and preach to the choir.

I'm trying to use the internet and this podcast to promote some efficiency into the commercial reality of our existence.

That's what winning this promo spot means to me.

I have a model, and like all models, it being honed and refined through what I experience.

Its a model of communications in the internet age, far from the tyranny of the numbers; the concept of "the hit show" being shoved down our thoats, when its just a reduction of a whole bunch of focus groups.

Its a way for MSers to take their place and their opportunity to get the information we need out here.

msb-0075 Care to share

msb-0075 Care to share

Feedback comes first so...

Dave, okay you don't like country and you didn't like "Lars needs Women."

Well what do you like?

Seriously. Its your show too.

Give me a genre and I'll look for it on the Podsafe Music Network.

They've growing their collection so they're growing the pool I can swim in.

You don't like country music. I do. I like anything thats well played.

You didn't like "Lars needs Women I did. It thought was funny. Like I sad, I like anything thats well played. (Even "ThrashMetal" but its never well sung. On purpose. :-)

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Here again is my advice on podcasting, on iTunes (or some other podcatcher) and the iPod.

"You don't need an iPod. (which is also the title of a song by "Uncle Seth" which you encountered on msb-0068 Memes, Words, Phrases and Sentences.)

That's only good if you want to carry the show around.

You don't even need iTunes (though you can get it for free at http://www.apple.com/itunes/download/ )

Its not the only podcatcher out there. (There's also iPodder at http://www.ipodder.org/directory/4/ipodderSoftware )

Its just that its extremely convenient to use iTunes.

If you had it, you could just open a web page on my podcast (at http://phobos.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?id=120932170
) and say yes to all the questions until you see my late, great cat Wiki and then simply subscribe.

Its the easiest way really."

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There were a couple of good articles in the music section of the Sunday New York Times. You might want to check it out...

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We are the proud slaves of a fifteen pound, female "Maine Coon" cat.

We let the cat scratch out her name to us: "Aixe la Chapelle!" (Okay, she only scratched out an "X" in the sand of her litter box. Give her a break, eh...)

Lord help us....

We have a cat who wants to bring a balanced equilibrium to ruling.

She's not dealing with the issues of this millenium.

"Le traité d'Aixe la Chapelle" was designed to ... oh shit ... it dealt with the place of Turkey in Europe in 1818. Now they're in; only 200 years late...

Maybe our "Euro Kitty" knows more than she's letting on. :-)

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Kee'rist. I've been going over my posts and some of the comments I've been leaving on my blog ( http://multiplesclerosisblog.blogspot.com/ ) and on other people's blogs (all linked to from my blog,) and I'm such a blow hard; they read well but I sound/read like some kind of freak :-)

I really must thank mdmhvonpa for providing the initial list of bloggers.

I'd love to be doing this show with him.

He seems to have a presence and provides quick, pithy aphorisms to everybody. (Hey! Want to try it? Drop me an email: charles [at] MSBPodcast.com. We could do something that would relieve my poor listeners out there. )

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Erik Kjelland recorded an album called "Everybody Falls" for the Multiple Sclerosis Association of America that "deserves" your support. ( http:/www.everybodyfalls.com or http://www.brightercd.com/purchasethecd.html )

You should "buy" it, and I'm not saying that just because I did.

Since its for the MS Society, I don't think they'll mind if I play a snippet.

You are more likely to tell your friends about it and get them to "buy" it.

They can even come and play the snippet off of this show, for free, and get the ordering into off of the show notes of directly from the show links.

Actually, it sounds pretty darn good.

Its well produced.

Its got nice, straight-forward vocals.

But I do take some exception to labeling the tunes as Rock.

They are simply too melodic for that and the guitar is definitely not "heavy." (Not a bad thing. :-)

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PBS just ran a fascinating special called "Remaking American Medicine." ( http://www.pbs.org/remakingamericanmedicine/care.html )

It states that, like all human endeavours, our health care suffers from the same basic systemantic flaw, and that flaw is that systems oppose their own function.

(To read more about systemantics head to http://www.generalsystemantics.com/Systemantics.htm or buy the book
Systemantics™. 2d ed. 319 pages. 1986. ISBN 0-9618251-0-3 [Softcover])

Just like Social Security would perhaps be better labeled as Social inSecurity, our health care would perhaps be better labeled as Health don't Care.

Its run, by the state or for profit, by healthy people, and consists of as many hoops as they can think of to place in the way. They're just doing their job, its nothing personal...

It also consists of a myriad of systemic obstacles, and therefore systemantic constructs, to the actual delivery of healthcare.

First and foremost of these is that doctors are not paid to take care of you when you're healthy. They are paid only for treating you for something, (and honestly, you're not guaranteed of anything as they're only practicing medicine.)

(Go for an annual check up twice a year and see how much of that will be covered by your insurance.)

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Next comes with the duplication of record keeping.

If and when you move, none of your records are available unless you specifically request their transfer, in writing.

(Good luck in getting transfered without an expensive power of attorney if you can't write for any reason. If you can't pay, roll up your arm and bend over.)

In my travels across America (both through Canada and through the United States) and in Europe, I have seen dozens of doctors, dentists, clinicians, pharmacists, therapists and specialists none of which know about any of the rest.

I have seen the inside of far more clinics to confirm what I already knew than my legs can now manage in a single trip.

And none of the records acquired in one place are available in the next place.

I have had to fill out the same damn forms over and over and over.

(I have given gallons of blood unnecessarily, just because none of the doctors had access to another's doctors results. [And I hate getting stuck and bled. It increaces my chance for an infection and potentially for an exacerbation every single time.])

Curiosity killed the cat, and I'm not taking any bets on the longevity of this reluctant patient.

Basically, we have to start keeping and transporting our own medical records in a USB dongle because if Doctor A doesn't know about what Doctor B's doing, he's likely to reorder a test uselessly, or to do something counter-indicated (read stupid) and possibly kill us.

We can put multiple megabytes of information on there and the doctor can add his new info, or save us all a lot of pain and waste of both time and money re-ordering tests.

If you hear any guff about patient confidentiality from any wise-ass, just tell them you're the patient and you demand that you be provided with a machine readable copy of your records.

There's CPT and IDC-9 data on you, prescription and medication interaction information and you're not leaving without a machine readable copy of your information.

And the next time you're handed one of these stupids forms to fill out, just hand them the dongle and tell them that they can copy all of the info there. (I figure if enough of us treat them like they were poor, stupid and ignorant, they'll eventually get the message.)

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Now that we've got our end of this handled; (we want our records damn it and we're going to make their lives easier if it kills them,) how do we get the poor (*cough* *cough*) doctors to stop having to fight with the public and private plans out there.

Shared care implies shared funding.

That implies a single payment point. Given the reticence of the Federal gummint to do anything not involving shifting rubble in foreign parts, I wouldn't count on them for a thing.

Next best thing, implies 50 payment points, State by State medical plans, with coordination on expenses by CPT and ICD-9 code.

The health care providers have got to be stopped from playing their stupid friggin' games; calling the same part or procedure by different names and/or numbers and having different price structures depending on what they can get away with charging by using the old divide and conquer technique. (The term ripping off the unsuspecting comes unbidden into my mind.)

Just look at three different hospital's records from just three different parts of the country. (I have,) and check out the myriad of inventory part numbers for the same part and the myriad of prices for the same part too.

Each hospital has its own price list from each manufacturer. Each manufacturer has its own price lists for each hospital.

Enough of that shit.

If its a procedure or part, I want it to be called the same thing and to cost the same.

I don't want a price based on whether I buy it in one state or the next.

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Then we'd only have one worry left; getting ripped off by less that scrupulous health care administrators.

That's what regulators are for, with stiff prison terms if they fail to regulate.

Honestly, we have got to start making these companies play fair, on a level playing field.

The problem with Adam Smith's "invisible hand of the market forces" is that its attached to an arm that is getting twisted into a pretzel.

Companies never play fair.

They're always trying to get an advantage not based on the quality of their products or their services.

They never want to compete.

Fine.

They already have a patent system to take care of that.

But that doesn't seem to be enough, does it?

Lets set the prices and take competition right out of it, or at least to another level entirely.

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Medicare mobility devices cutbacks on the 15th, bad, our votes on the 7th, good.

Go and bug your representatives.