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
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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
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our quality of life,
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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.

Episode 26: Down the Rabbit Hole Yet Again aka Health Care Due Diligence

Health care due diligence.

Has a nice ring to it.

We patients, the so-called "consumers" of health care, expect due diligence when we entrust our bodies and minds to that system.

But that's not what the term refers to.  No, "due diligence" is an accounting term, a requirement to investigate a potential investment before recommending it to clients.  If you are an investment banker, that is.  And you know how concerned they have been about our welfare over the past, say, oh, twenty years. These shills for the megarich are selling our flesh on the open market, while the megarich buy personal physicians and specialists who come to their homes or live there, sort of like modern-day Rasputins.

And the rest of us are relegated to a system built on corruption. I don't mean the health professionals and researchers and all of those who, with integrity, are working to make lives better for their fellow human beings.

I'm talking about the ones who are exercising their due diligence.  You know, them.

"'The best sort of due diligence process begins with a game plan [or strategy], and it proceeds along that game plan, only changing as dynamics of the due diligence changes or as [new issues] are discovered,' says Mr. Van Demark," one of the principals in the investment firm quoted in an article online (URL below).

I'm glad to know our physical and mental anguish is bandied about on the market as a game. Gives me extreme confidence in the system, let me tell you.

Episode 25: Down the Rabbit Hole and Suffocating

Air.

The breath of life.

We are immersed in its invisible currents, and it travels throughout our bodies to bring life to each cell, our lungs infusing our blood with that precious O, and our blood cells in organs along the route suck it up, this life-giving element without which they, and we, will die.

Air.

How easy it is to take for granted, to forget about its ubiquitous and necessary presence in each moment we know ourselves to exist.

Thanks so much to Douglas A. Sirois for permission to use this beautiful image, one that captures my feeling about the sacredness of air, especially given my increasing lack of the element in which we are immersed and dead without! The artist has many spiritual and fantasy illustrations I love!
www.dougsirois.com
douglas.sirois@verizon.net
http://dsiroisillustration.blogspot.com/
http://www.imdb.com/name/nm4223178/

So.  Why is it that my cells are not getting enough air?  That is the medical question of the day, the hour, the year. In fact, dyspnea—shortness of breath—began noticeably for me over Christmas and New Year’s while traveling to Europe and Switzerland. Actually, it was more like utter exhaustion than shortness of breath—the shortness of breath came because I was trying to get that precious air to the muscles that threatened to give out beneath me.

Air didn’t seem so invisible to me that day.  Of course, I couldn’t see it, but I could visualize its little superhero blobs traveling newly oxygenated from my lungs through the arteries, greeted with joy and celebration by the thirsty cells waiting in muscle and tendon and bone and organ, the parts of us that need that bloody, airy drink to keep going.   

Episode 24: Down the Rabbit Hole aka the U.S. Health Care System

Should you find yourself on the cusp of death in these United States, be afraid.  Be very afraid.

Okay, so we’re all afraid on the cusp of death, so how about this:  Should you find yourself sick for any reason in these United States, be afraid.  Be very afraid.

I live close to the finest medical institutions on this planet, and I have arguably the best insurance company covering my care, so my care should be top-notch and should not end up bankrupting me, right?

Well, it was a different insurance company covering me when I did have to go bankrupt due to losing my job because I was ill—yes, I know that’s illegal, but you just try to fight it and see how useful that in—in my case, I gave up after one of three appeals because I was so darned sick, so exhausted, and my mind and abilities to do paperwork were not up to the task, and so I let it go.

Let it go.

Let everything go.

Because when you’re sick in the United States today, that’s likely what you’ll have to do.

The issues abound, and I intend to take each one on in future episodes, but for today I’ll focus on what I believe to be the underlying problem, the fundamental issue escalating costs and reducing coverage.

Episode 23: A Sabine Christmas

I'm coming to this topic raw, unpolished.  Uncertain of what I want to say or even how to begin to say it.  I imagine I will massage this episode innumerable times in the future, and I'm not sure I'll get very far with this very first attempt.

I want to write about it, to connect with the persons and places and emotions I connected with then, but the task is daunting on so many levels, the most daunting being the pain I feel when I think of her, lying there in the hospice bed, sleeping most of the time, thankfully--she wasn't in a lot of pain most days, but exceptions certainly came, and even if medication kept the physical pain at bay the psychic pain was palpable to us all.

We tried to do what she'd wanted.

Sabine knew she was dying, and she and I had shared emails in which we talked about what we'd want in our last days.  I'd visited her a year ago in Albania, and I was dumbfounded that she had lived another year after her surgeon told her they'd decided her cancer was inoperable--in other words, it had won.  The only way to defy Sabine's determination to live was to be relentless and brutal, and her cancer was both--though for the longest time she'd say she had cancer, but cancer didn't have her.

Episode 22: From Bad To Worse Part Deux

In the pilot of The Mary Dell Show, I explained how the name of the show is based on my brother's recording me as a kid on his reel-to-reel tape player as he interviewed me about newsworthy topics such as how to catch lightning bugs.

When seeing that gigantic tape player on the foyer floor as my parents said good-bye to my big brother on his way to Georgia Tech, the impact of his leaving hit me for the first time.  That tape player defined my brother, and it defined the relationship I'd had with him my whole life.

That would mean no more Mary Dell shows, no more Walter Kronkite-depth interviews on the workings of my then eight-year-old mind.

And I mentioned that as my first heartbreak.

My second came when my baby was born two months early and was given a 50/50 chance for life in his first 24 hours, and a third came about nine months later when I learned he must've had a stroke while fighting for his life in the Isolette for 26 days, and his entire left side was partially paralyzed. And a simultanous one when learning, at the same time, that he had craniosynostosis, a malformation affecting the skull bones, which explained the odd shape his had developed into by then. By the time he was a year old, he'd had two neurosurgeries to chisel open the sutures between those bones, which had fused prematurely and forced his brain to grow in a long shape from front to back.

In a flash of nature's ironic fun with us, Jason had a third surgery to add plastic to those same sutures because, having been forced open with hammer and chisel, they refused to close again, as they do in most kids' heads well before then. And in yet another flash, nature took away his hair when he was in his early 20's, leaving his skull, with its scars and bone ridges exposed and no camouflage at all for it shape which, thankfully, had greatly improved after his surgeries but still draws attention until one gets to know the person he is, and of course it doesn't matter at all then. Nevertheless, life has been tough for him, and appearance matters in this superficial world. He's fortunate, though, that he is a very good looking guy, so any flaws in his appearance quickly disappear once you get to know him, as is true for all persons with unusual physical characteristics.

[N.B. June 27, 2014.  In an interesting--no, groundbreaking, for me--twist, Jason's early baldness may have been for the exact same reason he was born with craniosynostosis--a genetic condition that I'm convinced runs in my family called myotonic dystrophy. The two conditions were just recently connected genetically by scientists. I'd been sure since this happened that there was a reason for my pregnancy problems and Jason's issues, something that would explain both--I was not satisfied with the explanation given at the time that his craniosynostosis was the result of a random gene mutation. Of course, doctors knew so much less than about our genes. The Genome Project was merely a dream then. It's taken me 35 years and a whole lot doctors' appointments, tests, medical advancements due to research, and personal sleuthing to finally come, I believe, to the answer. I'll know for sure soon, since a Hopkins neurologist has reviewed and agreed to take my case, and I'll see her on July 9.]

Episode 21: From Bad to Worse--Or--Just Another Typical Day

Flu.

Something so mundane, yet something that will righteously kick your ass.

As it has mine over the past week plus.  Today was my first day back to the office, yesterday my first day on email--something that never, never happens.  Hell, the whole month I was in Europe I was online and in touch, wired and ready for sound, practically every day. It was more fun checking in after a day in the Alps, though, than it was last night still sweating and miserable thanks to a tenacious round of aches, fever, major killer cough, malaise, headache, head-stuffed-with-cotton ache, dizziness, a touch of nausea cum diarrhea ... well, you get the gist. On the other hand, I was only seeing the Alps (if I'd had a bucket list, they would've *pun alert* topped it) because my dearest friend Sabine was then dying of cancer and had invited me (and paid for me) to spend a month with her as her family and friends said good-bye--so that part was NOT fun. It was beautiful, because of the way Sabine had arranged everything--and, thus, fun did occur, as when we celebrated Christmas in German style with her family (actually, no blood relations there, but family nonetheless) who would adopt her adopted daughter after her death).

So, obviously, things could be far worse--but tell that to a body racked with flu. So, back at work, my "To Do" list has had an increasing "Should've Damned Done That!" category, and let me tell you it is not much fun to lie around hoping to die at the same time you're stressing about who's going to lay into you at work for something you should've done already, the whole time kind of praying that everyone lets you slide because the flu is the flu, an equal opportunity ass slayer.

In fact, not to make light of a sad subject, the flu killed my grand-daddy whom I never knew when my own daddy was only four years old.  At least that's how I've pieced things together, my father having been born in 1915.  [MY, I am truly old myself, as that statistic lays bare. But I like when, where, and to whom I was born, so I really don't care that this grand journey has cranked along quite a while.  Frankly, I'm lucky on a variety of levels that I've come this far!]

My dad told me that his father died in a gutter in the city, and from that I'd gathered he'd been a drinker or, more accurately, a drunk.

But in later years I learned about the 1918 flu outbreak, which lasted more than that one year, into the year when Dad would have, in fact, been four, and the fact that hundreds, thousands, were dying in the streets of Washington, DC, and suddenly my grandfather became a hero in my eyes. He dared not bring his illness home to his wife and little boy, so he died in the streets with the masses though I've no doubt my grandma (from whose name the "Dell" of the Mary Dell Show is derived) would have tucked him into bed and brought him tea and homemade soup to ease his dying days had he actually gone home.

I learned that and saw photos of the dead bodies in Influenza--a hell of a book, by the way, though not quite as masterful as And The Band Played On, but the message of both was that a major pandemic of any kind will turn society upside down, and not only the disease itself is ugly. One day I'll get around to ordering my paternal grandfather's death certificate from Vital Statistics.

On my mom's side, I already know that her dad died of an aneurysm of the aorta in his 50's--maybe a year or two older than I am now. I remember that because my brother and I were kids when she told us that.  He might have been all of twelve, and without thinking he laughed and said, "Wow, that's sounds cool!  An aneurysm of the aorta!"

Of course, I knew that immediately as the words came out of his mouth he'd realized they weren't exactly the right thing to say to your mom just after she's told you about her father's death. And so I cringed when she said, "Well, I don't think that's something to laugh about" or something equivalent. I hope Mom also realized immediately after she said that that my brother would have figured this out out and already felt bad about having said that--my brother J was quite sensitive.

In other words:  AWKWARD!

But I know the cardiovascular system on both sides ain't the greatest.  MY dad died of a myocardial infarction, MI for short (clever, huh?) just shy of his 70th birthday this very month .... uh, in 1985.  I was 25, and he'd gone with Mom to their ocean getaway and died in the shower the morning after a night of dancing to Big Band music, the music they'd danced to the night they met in 1947 at the Spanish Ballroom in Glen Echo Park.

TO BE CONTINUED

Episode 20: Down the Rabbit Hole OR On Being a Patient in Today's Health Care System

If you've ever read Alice's Adventures in Wonderland, you know that "Wonderland" is not a happy place to be.  Nothing makes sense there, and when Alice tries to get out of the underground warren she falls into, she is thwarted at every turn by absurdity.  Nothing is as expected; everything is illogical; nothing makes sense; frankly, the place is terrifying.

Just like today's health care system in these United States of America.

Now, I've had some good doctors, and I'm not here to doctor-bash.  Nearly all of the absurdities I've been subjected to have been thanks to the insurance companies--you know, the ones that are supposed to pay for services to make us healthier but, in fact, are money-making entities far more interested in lining the pockets of their CEOs and shareholders than in taking care of the sick who rely on them and who pay for their coverage. We are their customers, and if they didn't have a monopoly on the whole thing, they couldn't get away with what they do.  If we had a choice about how to pay the astronomical costs of taking care of ourselves--those skyrocketing costs ALSO thanks to those same filthy rich CEOs and soul-less company owners--we'd never shop at their "stores," ever.

But we can't vote with our feet.  We can't take our business down the street to get a better deal.  They've got us in their gnarly fingers and are pushing pins into our inert bodies while pocketing all the money in their bank accounts overseas--not even keeping our dollars right here in the good ol' USA.

Oh, well, hey.  That's what Obamacare is all about--breaking that monopoly.

Episode 24: On What Jesus Said About Hypocrites

I wasn't too old--five, six maybe--before I realized something was very, very wrong with this world I'd been born into.

Things just weren't adding up.

What I learned in church--that Jesus loved everyone the same, that we were supposed to love everyone the same as He did--just didn't appear to be happening in day-to-day life.

I arrived a few days late in the dog days of a hot Washington, DC, summer, disappointing my brother, as my due date had been the 4th, and he'd drawn a picture of me "shooting out like a firecracker," as he wrote in the caption.

The year's events demonstrate the transition in our nation from the innocent and prosperous (for white people) 1950's to the next decade, during which society would be turned upside down by a bunch of white college students rebelling against the values of their parents (my sister included) and the unrest and protest of those "other" Americans--the ones who'd lived at the margins of society since merchants sold them into slavery and, despite Lincoln's Emancipation Proclamation, had never really been freed.

But what did I know of that?  My family lived in a post-war, solidly built brick Cape Cod in a neighborhood of nearly identical such homes, each with the dappled trunk of a sycamore stretching ever higher into the sky, dropping spiky seedballs into the grass below for children's bare feet to painfully land on.

Those were the worries I had as a child--not whether my mother could pay the heating bill, or whether the lights could be turned on at night, as one of my students would write many years later when I assigned an essay in which they were to describe a difficult time in their lives.