Episode 33: Mary Dell, MD (Medical Detective): Another MD, Myotonic Dystrophy--Could this be it?

For some time now, I've been convinced that at least a large percentage of my maladies (and, lord, there are plenty of them to divvy up) correspond to some sort of neurological disorder and, most likely, a neuromuscular disorder.

As you may or may not be aware, I am a Master's-prepared medical librarian, and conducting literature searches for physicians is something I have been doing for many years.  Thus, I am proficient in medical literature research.  In previous episodes, I've laid out my evidence that there is something going on in my hypothalamus, a critical part of the brain that sends hormonal messages to the pituitary, which is more commonly known for as the director in the brain for autonomic functions such as breathing, heart rate, sleep/wake cycle, temperature, etc. I have documented problems in each of these areas.

I have many of the signs (quantifiable evidence) and symptoms (subjective, qualitative evidence) of multiple sclerosis and some of the muscle dystrophies.  In fact, my neurologist, the wonderful, eminent, and human Dr. A., told me last week he would diagnose me now with MS based on my symptoms and the diffuse periventricular white matter lesions my MRI shows, except that I'm "too old" for a new MS diagnosis and also do not have lesions in my cervical spinal column, as would be expected with MS.

Episode 32: Wegener's Granulomatosis Rears its Ugly Nazi Head, and It's Got a Hole Right in the Middle of its Face

Okay, so maybe he was a Nazi and maybe he wasn't, but based on some research that he WAS, the doctor whose name stands for granulomatosis with polyangiitis, today's "preferred," non-epynomous name for what used to be called Wegener's Granulomatosis, I'll try to use the newer name, or GPA for short.

Whatever the hell it's called, it's hell.

Okay, I don't even have a firm diagnosis at this point--or, rather, I don't have the labs to back up the clinical diagnosis I was given by my Johns Hopkins rheumatologist, but given the fact that this is the place where the best specialists in most fields hang their pointy hats, I have to accept that she may well be right.

When I saw the kidney/vasculitis specialist for Wegener's a few months ago, she told me I needed to see the rheumatologist on an ongoing basis.  I'd told her I wanted to cancel those appointments because my symptoms weren't bad at all--I don't enjoy these visits to Baltimore physicians and would like to minimize the pain in the ass of having to go there.

But today I just want to bitch a little about GPA or whichever vasculitis is apparently destroying my body one tiny bit of artery at a time.  So, to update all my loyal fans (I think my only readers are what's known as pirate or vampire sites that click up your viewings though no one is actually viewing anything), these are the symptoms of GPA I've had and that are currently emerging.

I'm not going into all the other damned conditions I have; in one of my earlier episodes I list them, and it's just too depressing to go through again.

So here's the timeline, more or less, for JUST GPA in my life:

Episode 31 - On Trickle-Down Economics--Have you noticed the word "trick" starts the whole concept?

Before I get started, I want to thank my Uncle Freeman (marvelous name, isn't it?  So Scottish).  He was on duty in Hawaii on the day Pearl Harbor was struck.  Today is the anniversary of that day in infamy.  I am so grateful that Freeman lived, so grateful he was my uncle and his wife my aunt--beautiful, beautiful Ruth--so grateful he lived so he could father all three of the sons who would become my tall, handsome cousins when I entered the family.  Thank you, Freeman, and may you be round dancing and meeting all those ancestors you traced back to the 9th Century in heaven!

Now, back to the business of the day.

One of Reagan's two initiatives that have altered our world so drastically, leaving us in the midst of turmoil and fear and need (the other being the Reagan Doctrine--another episode):  Trickle-Down Economics. Have you noticed that the word "trick" starts the whole concept?

The idea was spoon fed to the American public by claiming that the method would grow jobs and make our economy stronger.

How?  It's simple!  Before TRICKle Down, everyone in the U.S. paid approximately the same rate in taxes--that is, other than the very poor who were given a break--something the gimmes resent so horribly even though that "break" doesn't even compare to the mega-rich's robbery legally sanctioned by this policy.

So, let's take the richest among us and give them a TAX BREAK!  If we do that, they will invest all that extra money into new ventures, new jobs, and new wealth for everyone!  Right?!

How dumb do you have to be to believe that?

Let's make the money earned on investments an exception from regular old income taxes for wages EARNED.  Let's tax investments at a mere 15 percent, rather than the 30-something they used to have to cough up like the working schmucks still do.  How hard is it to do that math?  Take away money from the public coffers, and not just any money, BIG MONEY, and it will miraculously re-appear when the masses have good-paying jobs.  Um.   I think the other half of that math equation has been zeroed out.  So where will the money come from?  That's right, sports fans, you and me, the working stiffs whose checks get smaller every year theirs get fatter.  Damned obese, actually.

Let's let the rich get richer on their investments--no work required to do that, just money, and they've got plenty of that, so let's just make it easier for them to make MORE money and cut their tax rates by more than half. There's a sucker born every minute, and a whole lot of them buy into this malarkey.

Because we ALL know that the rich have the best in mind for the rest of us.  They are always willing to share their wealth. (Ooooooooooooooooooh, that sounds Socialist; gives me the chills; god knows it's a far scarier thing for everyone to be entitled to a reasonable living than for all the money to be hoarded at the tippy top while the rest of us suffer.)

But wait?  With all that extra money we've given them, why are the Mega Rich sending all the jobs overseas? That's not what Ronnie promised!  Why are they closing factories and plants here in the U.S., the  place their money was supposed to trickle down to?  Why are they buying up small corporations that are barely making it, bankrupting them, and declaring bankruptcy so they don't have to pay anything back, and leaving the tab with the taxpayers?  And WHY THE HELL do half the citizens they are shoving this to keep believing their lies and buying into their crap?  Oh, wait, they can't buy into it--they don't have enough money left.  They just give their brains, hearts, and souls over to it and watch their assets dwindle.

TRICKLE DOWN?

The only things that have trickled down in this country since the Reagan era are the number of jobs in this nation,
drip
drip
drip
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the amount of money in our bank accounts,
drip
drip
drip
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the amount of money in our retirement funds, and, most of all,
drip
drip
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drip
drip
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our quality of life,
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drip
drip
drip
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our hopes for the future, our hopes for our children's future . . .

Episode 30: What's My Name? Mary Dell, MD (Medical Detective)

Here’s a call out to the then-Snoop Dogg (now "Lion," or was last I heard) for the use of his title—gotta love that tune! http://www.youtube.com/watch?v=wHKEJqMSiDg[Contains “obscene” language.  And while we’re discussing that, here’s a link to George Carlin’s “SevenDirty Words” to loosen you up.]

Okay, if your ears can't handle a little profane reality--here's what I'm really talking about today:  MYSTERY SOLVED, or at least a huge chunk of it, no thanks to the doctor/patient relationship I'm now negotiating with my much-loved primary care physician who, I fear, is burning out on me and on her practice in general.  And who can blame her?  Our health care system is so messed up today with everyone's running a patient's care OTHER than her own doctor--that's backasswards.  If I were a caring physician today, I'd be as burned out as she is.  I could just as easily have included this in my Down the Rabbit Hole series on the madness of today’s health care system as the story starts with more of that madness.  First, I will lay out the facts:

Episode 29: Background Music While Sabine Leaves this World

NOTE:  All persons' names other than Sabine's have been changed to maintain their privacy.


Before you start "watching" this episode['s text cross the screen, delivering visual messages--hopefully], you must turn on your audio and listen to this version of Amy Winehouse's "Will You Still Love Me Tomorrow?"  NOT the one that is on most of the compilations; this one is in the soundtrack of The Diary of Bridget Jones, a totally arbitrary fact, since I heard it as the lead song on the European press of Lioness:  Hidden Treasures, while the U.S. press of that album has a different version I like much less.  This one is simpler, not so produced, which fit perfectly into the gentle but good vibe mood we wanted while listening to it over the holidays last year, while we sat vigil by Sabine's bedside.

Here's the correct version:  http://www.youtube.com/watch?v=Ludxpkyrab0.

Only by playing that version of Amy's "Will You Still Love Me Tomorrow?" as you "view" this episode might an ache rise in your chest similar to the one now in mine as I think about my last days with my dearest friend, mentor, and treasure--Sabine.  I've written about her before, so you may want to catch up on the story by going to earlier posts--Click on "Sabine" in my labels on the right-hand lower side of my first screen to access those.

Episode 28: A Sixties Childhood: Mrs. Brown, You've Got A Besotted Student

First grade teacher:  Mrs. Brown.

Pretty.  Big brown eyes and a beehive of rich brown hair.  Wore pretty clothes.  A lot younger than Mrs. Erwin, who'd taught kindergarten.

She was my first crush--oh, wait, that was Davy Jones.

Very little of that school year remains in the memory vault, but anyone who has had the demon anxiety stabbing its little fork into one's psyche as I so regularly did (until Effexor saved me--but that's another episode) will relate to the horror of this memory and the damage it must have inflicted on my already neurotic little six-year-old soul.

Mrs. Brown sat with the class during lunch, and each day a different student would be selected for the honor of sitting right beside her!  She always sat on the end, and I'm sure this was to relieve her of the duty of sitting between two students--but we didn't think like that then.  We were certain she was as happy to sit with us through lunch as we were with her.

On that day, I had been selected--at last, and to my immense joy--as the Chosen One. All morning I envisioned sitting next to Mrs. Brown and having the most wonderful conversation with her--or whatever six-year-olds want when sitting next to a beloved teacher.  My memory isn't quite that good, but I have to think I'd be trying to come up with stuff to say.

Of course, I could think of nothing to say.  Yes, even six-year-olds can be shy, and this memory tells me I'd already acquired that trait in spades by then.  But I was holding my own until . . .  I took a big bite of my apple and . . . .   Can you guess?

Episode 27: Mary Dell, MD (Medical Detective)

This episode promises to meander somewhat.

I've decided to give myself an MD after my name.  That's right, Mary Dell, MD.

NO!  Not Medical Doctor--believe it or not, this isn't about my ego, and I don't pretend to know a fraction of what physicians and other health professionals know.  I've been interested in a few very specific health conditions, since they have affected members of my family, and since I became a smorgasbord of chronic disease myself.  I don't want their jobs.  I don't like dealing with blood and guts.  I like research, on anything at all, really, but since these medical problems keep plaguing me and folks I know (like all of us), that's what I'm researching these days.  And, heck, I'm a bona fide medical librarian, so I know how to do it.

No, just call me Mary Dell, MD, for Medical Detective. And this is the Mary Dell Mystery Disease show.  MD MD, MD--

Will that get me hired to consult for House?  Ha.