Episode 43: Of Newts and Poisons and Efts and Fathers and Ghias and Hard Drugs

1st WITCH.  Round about the cauldron go;  In the poison'd entrails throw.— 

ALL.             Double, double toil and trouble;
                     Fire burn, and cauldron bubble.  

 2nd  WITCH.
                     Eye of newt, and toe of frog,
                     Wool of bat, and tongue of dog,
                     Adder's fork, and blind-worm's sting,
                     Lizard's leg, and owlet's wing,—
                     For a charm of powerful trouble,
                     Like a hell-broth boil and bubble.

Those witches in MacBeth knew how to cook up a poison stew.

Today I'm thinking about poison after the demise (I believe) of my pet red-spotted newt, a creature whose skin is toxic enough to kill college students drunk enough or challenged enough by peers to eat them and die.

Now, as long as you don't plan to eat your red-spotted newts, keeping them is perfectly safe, though washing hands well after handling them is an obviously wise move. They actually do well in captivity, living up to 20 years, according to a former amphibian zookeeper whose site I'll cite here soon. (Misplaced modifier alert! No, the zookeeper isn't an amphibian; he cares for amphibians in a zoo, ha.)

Of course, you must carefully care (no redundancy there) for these little creatures, and they do require specific care, such as calcium in their diets, to live very long. I asked said expert whether I could keep them in a terrarium filled with the soil and moss from my back yard, the place where I'd found my pets, periodically replenishing that soil with new from the yard so the tiny organisms the newts feed on would be restored.

The expert told me I could easily keep them ten years with this system, especially if I augment their diet with freshly caught tasties such as (small) earthworms dusted with calcium powder and rolly-pollies aka potato bugs. The latter's tiny armadillo-like exoskeletons contain lots of calcium. The humus-rich soil and leaf litter from my yard contains the newt's favorite delicacy, the snow flea, so Fred and Ethel would get many fresh batches of their comfort food.

Eft is the juvenile, terrestrial stage of the newt. A bright orange jewel on damp brown leaf litter after a rain is how you'll most likely find one of these creatures that are so prevalent in Appalachia.

In the case of one of my adorable missing eft, HE was not poisonous. I was. 

Episode 42: New Clue Dammit, and It Ain't Looking--or Sounding--Good, But Sometimes it Does Sound Funny

A new(ish) clue

Can you tell that I love language? Can you tell I have a difficult time cutting off the flow of language in my brain? I used to be concise when I needed to be, really. As a writer I understand the value in being concise. I just have a nearly impossible time doing it anymore, and now I think I understand why.

"From the brain and the brain only arise our pleasures, joys, laughter and jests, as well as our sorrows, pains, griefs, and tears.... These things we suffer all come from the brain, when it is not healthy, but becomes abnormally hot, cold, moist or dry."—Hippocrates

The medical sign of transcortical motor aphasia (TCMA) refers to a problem in forming words because of a lesion in the frontal lobe of the brain. Mostly, this disorder is caused by a stroke, but it can also be a consequence of progressive neuromuscular disorders. And, actually, I have no idea if this is what is going on in my brain. It just helps me to try to solve these puzzles; I'm right sometimes and wrong sometimes. But thinking about what's going on with my mind and body and doing research about it is sort of wired into my being. When I stop being curious is when I hope I stop.

So I'll simply call this weird-thing-happening-with-random-words-coming-out-of-my-mouth "aphasia," and that's probably the wrong word for it, too. I actually think it's paraphasia. These sorts of substitutions happen to everyone--a man well known for them was a certain Dr. or Mr. Spooner; hence they are also known as spoonerisms. They are normal. But they are happening to me as many as two and three times a day, along with other problems with speaking clearly (some stuttering and mixing up words), so I can't help but think this is yet another part of this neuro thing plaguing me, whatever my eventual diagnosis turns out to be.

So, here are some examples of recent spoonerisms or aphasia or whatever it is:

• I've had my hole in the sand lately (for "head," obviously, and OUCH on the other)
• Kidney chap for chimney cap
• Graham crapper for graham cracker (some of these are priceless)
• Graham cracker price instead of graham cracker crust (I love to bake--have I mentioned that? This was a conversation about, obviously, making pies)
• Klondike Pete for Yukon Cornelius--you know, the prospector in Rudolf the Red-Nosed Reindeer. This one isn't so weird; many "normal" people occasionally make these types of word substitutions, but they're happening alarmingly frequently these days.

This one's a little personal, but it's kind of beautiful, so I'm including it anyway:

• You don't understand how much I love our make loving.

That was spoken to my Honey when trying to explain why I have no energy for sex these days, which I discussed on Episode __, about sex with chronic disease.

Today was a whole new record, though. Honey got home at about 8:30 pm from work, and we hung out for the evening chatting and, THRILLED, actually having sex! It was as amazing as ever, and we both needed it, Lord knows. Before that, though, we had fun talking, and the word substitutions started flowing like a waterfall full of stuffed animals and car engines:

• "Over the Window" for "Over the Rainbow"
• "Kitchens" for "kittens"--My adult son just got two of the most adorable little tabbies. In fact, I think they were heaven sent--more on this in an upcoming episode.
• Discussing with Honey attendance at one of my best friend's boyfriend's (another of my best friends) cousins (another dear, good friend)--see what I mean about being utterly unable to be concise anymore?--and where we might sleep, I said, "We can do a towel" when I meant "We can do a tent."

This is my current personal favorite, however:

• Saying to Honey that the word play and puns were flowing out of me (the really cool side of this word soup I'm in), I said I should make it a "stand-up commune." 

I figure my twisted neurons had conflated "comedy" and "routine"--the long oo sound of that word, to come up with that one.

A couple more since I first penned this episode:

• Sunny of Yellowbrook Farm (I actually think that one's sort of poetic)
• "I'm going to hang out the blanket that I cooked." (Honey's washer and dryer are in the kitchen--that's how I figure this one came about.)
• "I'm going to drop this [a package] off at the airport." I meant "post office." Here, I figure the connection relates to the air mail envelopes in which my Aunt Helen's typed missives from Istanbul, where she was the principal of a girls' school, would arrive. Both places are also sort of "official," so it all makes a strange kind of sense.

Disturbing? Hells yes. Fascinating? HELLS yes.

And this next one illustrates another little problem my body's been having lately, but I know it's not something I alone of my age group is experiencing: the joys of incontinence. At least it's urinary incontinence and not fecal, though I went through that even greater fun for a period a few years ago which, thankfully, has mostly resolved. I have a story to tell on about that, but it's about as disgusting as they get, so I'll spare you for now. It doesn't even have a funny punch line, so maybe I'll skip it entirely. But these are the indignities rained upon (oh, dear, poor choice of words in this context) a person with chronic disease.

Anyway, as Honey and I were laughing so hard at something one of us said (we do find each other entertaining), I peed my pants and, dammit, I'd just put on those pajamas with the little miniature schnauzers all over them Honey had given me last Christmas! [This reminds me of a favorite scene in one of my favorite movies, and definitely my favorite Coen Brothers flick, though Fargo was close--Raising Arizona, in which the rich southern sheriff-type father of quintuplets is asked by police what his kidnapped baby had been wearing, and he says, "I don't know! Little Yodas and shit!" Hilarious.

After raising my laughter-tear-stained face from the mattress where I'd planted it during the fit, I said:

• "I need to take off these piss-stained cones" (meaning clothes). Lord knows where that came from. I don't even want to think about it!

When I went to Baltimore to see Dr. RQ, the Bad (Red) Queen of Neurology on July 9, I told the first doctor who'd taken my history that I was having episodes of word substitution while talking and had begun keeping a list. Unfortunately, it had been in my iPhone notes, and I'm too poor for an iPhone anymore, so I had a different one on me. I know these practically by heart, but when the doctor put me on the spot by asking me for examples, I couldn't think of a one. Figures. 

Maybe if I could have given them some examples of my aphasia, they would have taken my neurological problems seriously, but dammit that's the whole problem with aphasia in the first place!

Naturally, I had to put my Medical Detective hat back on and pick up my magnifying glass. Lucky for me, when I looked at the notes on my defunct iPhone, I had already done that research and found the culprit that I'd sort of, er, forgotten about: transcortical motor aphasia. I'd remembered the term "substitution aphasia," which makes sense, but tonight I read the medical term with trans-effing-cortical trepidation.

In a 1986 study, patients with TCMA also showed perseravation--a repetition of words or gestures after they make any sense socially. What I found particularly relevant about this is NOT that I've noticed myself doing this but by a further description of what is most likely happening in the brain to make this happen:

In a broader sense, [perserevation] is used for a wide range of functionless behaviours that arise from a failure of the brain to either inhibit prepotent responses or to allow its usual progress to a different behavior, and includes impairment in set shifting and task switching in social and other contexts. (Dictionary of Biological Psychology)

I've long said that one of my major problems is that I keep getting "stuck." When I start something, I can't seem to stop, even if it's something I don't like doing--such as doing paperwork.  Ugh.  Hell to get started on it, but once I'm there I have a hard time stopping, even if I'm going to be late somewhere.

This also applies extremely well to my sleep issues. When I'm awake, I have a hell of a time settling down and going to sleep. When I'm asleep, well, as you know I have an even harder time getting up, even if it's for something I really want to do. Case in point: I missed a weekend-long Labor Day party this weekend with my very best friends simply because I couldn't get out of bed.

Hey, not being able to get up to go to work is one thing, but not being able to get up to par-TAY with some of my dearest friends?

This shit don't sound good.

And here's an interesting Wikipedia quotation: (Students! Never use Wikipedia in school  papers--it's an unreliable source--but I'm too lazy right now to do otherwise. Do as I say and not what I do!) is quite interesting:

"Such deficits can be related to pathology of the nervous system (central and/or peripheral systems involved in motor planning) that affect the timing of respiration, phonation, prosody, and articulation in conjunction."

Bam. Have I told you lately about my breathing problems?

Fortunately, I have an appointment coming up with my lovely Dr. A, the local neurologist I'd pit against Dr. RQ any day in handling sensitive matters with their patients, probably a far more valuable skill than any other in a physician for a patient facing frightening changes in his or her health. The rest of it's just technical. It's the heart we need.

In fact, so upset am I still about Dr. RQ that I started a Web site and, if I live long enough, would like to create a non-profit agency dedicated to this and other issues Down the Rabbit Hole in today's medical system. I have several friends who have gone through their own dark tunnels down there while trying to get a diagnosis, and I want to share their stories and the stories of others from the Web or other media so we can get the attention of the medical system that exists purely to serve us and the practitioners whose salaries are collected on our pain and suffering. Changes must be made. We shouldn't come last in that system, and we shouldn't be treated as if our lives are trivial.

There's a right way and a wrong way for these things to unfold, and today mostly everyone's going about it the wrong damned way.

About a week ago, looking for stories to post to the site, I quickly landed on one by a newly diagnosed ALS patient. I didn't know anything then about the viral ice bucket challenge for ALS happening at that very moment, but Jerry Gladman's story eerily reflected mine in the way a neurologist he'd sought out for help treated him. Like our lives are trivial.

Not only that, this is one of the most moving--both terribly sad and terribly uplifting--accounts I've ever read, and I've read a lot of books--I used to be an English professor--and a lot of cyber material in my years.

Jerry had a big advantage over me--he could manage to be concise and still convey the struggles of a person facing life-threatening illness experiences. And he did that with heart, humor, and a generosity of spirit I found more than inspiring. He also wrote with hope, and taking that away is the worst thing that can happen to a person.

I looked Jerry up after reading the story--he'd first been given a sentence of two years by Bad Neurologist, but Good Neurologist had given him hope based on Stephen Hawking's amazing number of years living with ALS and other examples of persons living longer than average. So it was a blow to find out that Jerry died less than a year after that last post.

But he clearly demonstrated the way I hope to face my impending death should it become absolutely clear that my number is about to be called. He was a well-named man despite his illness. At the beginning of the story he couldn't really relate to Lou Gehrig's "I'm the luckiest man alive" sentiment, but by the end one gets the feeling he felt pretty lucky after all. His story reached so many people also facing that terrifying diagnosis, and he certainly reached and helped me.

I found many correllels--ooops! What's THAT?--a conflation of "parallels" and "corollaries"--in his story and mine in other aspects of being a patient in today's medical system, though he was in Canada and I here in the good ol' U.S. of A.

Granted, we're not in Liberia or some other place where it would be a luxury to even see a doctor about a condition such as this, so I really have no reason to complain. And so I won't. I'll just chronicle things as I go--but if someone is going to let me down, I'm going to chronicle that, too, Dr. RQ.

Episode 41: Down the Rabbit Hole and There are Nazis Down Here!

Readers of fiction will recognize the allusion to Watership Down in this episode's title. Watership Down, a popular book when I was in high school, is based on a completely absurd construct: A warren of bunny rabbits must fight to save its society from nasty Nazi rabbits. Believe it or not, it's a terrific read. It works. Which is more than I can say for the rabbit hole I currently find myself in.

In fact, this rabbit hole suffices as a metaphor for the utter irrationality in today's health care system. I've actually encountered Alice's Red Queen; I don't want to call her a Nazi, exactly. Or mix my allegories. Just couldn't resist the literary tie-in.

Okay, okay, enough with the figurative language.  Here's what happened, Dear Viewers, when I finally underwent the long-awaited neuromuscular examination for possible myotonic dystrophy at Johns Hopkins Medical Center. Now, to date, I've been more than pleased with my care at Hopkins, but this experience has likely destroyed my loyalty to said institution.

They'll be happy to be well rid of me anyway. Who am I but one patient, powerless against the juggernaut of Big Medicine, Inc.? One patient jacking up their costs (and their profits) with her smorgasbord of chronic disease. And now that I have Medicaid instead of Blue Cross Blue Shield, I'm doubly unimportant to the system created (but not maintained) to help me and you.

I'm a shareholder liability, that's all I am. "Let them die then, and decrease the surplus population!" Okay, okay, not yet another literary character entering this story, but I often quote Ebeneezer Scrooge at moments like this.

"Off with your head!" says Dr. Red Queen, in so many words. "And no DNA test for you--you've overstepped yourself so I don't care to relieve your mind with an easy yes-or-no answer to an at least somewhat possible reason for your years of suffering and confusion at the ways your health has failed you! So there!"

That's her reflex hammer in her hand, and she refuses to admit the medical sign it renders in her patient, lest her patient be right about something she has no business knowing about! Off with her head, and no DNA test for her . . . NEXT! I have a paycheck to collect and a lifestyle to protect and a reputation that trumps yours, so nyiehaya!

Despite this latest horrific experience (and there have been plenty more than this and the one with my son, believe it or not, in my tumble Down the Rabbit Hole), the Hopkins visit was not a complete waste.

The electromyography (EMG)--a rather uncomfortable test in which a doctor sticks needles into your muscles and records the electrical reactions--indeed revealed some myotonic abnormalities. Thus, although Dr. RQ, as I'll call her, refuses to consider my experience as valid, the machine doesn't lie. This is not over yet.

My true purpose in telling my story is that I want you, Dear Viewer, to understand how the medical system is against YOU, the patient, and how LITTLE YOU MATTER in any quest to learn what is wrong with you or a loved one. Obviously, this needs to change. 

The medical system exists to serve US--YOU and ME, the patients. We, the People. But as this diagnostic nightmare continues to demonstrate, we count very, very little in the stories of our own lives, if we believe what our doctors and other health professionals, insurers, and governments (federal, state, local) tell us. 

But we don't have to believe them. We know our bodies; we can read; we can think; we have friends and family who want to know what is wrong; we have only this one life to live, and we deserve to know what is wrong when there is something wrong. That's what the system is for, but the system too frequently fails us.

Episode 40: On Invisible Disease, OR Breathless Sex and No Longer in a Good Way

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Episode 39: Big Clue for Mary Dell, MD (Medical Detective): Suffocating Again - or, Rather, Drowning

Air. Precious, sacred air.

My previous episode on this invisible but all-present substance in which we are all immersed, and upon which we all depend, is Episode 25: Down the Rabbit Hole and Suffocating.

Sadly, my body's lack of air continues, which is why I'm revisiting the topic. It's been a rough weekend.

I was so happy to have the artist's permission to include his image of Sacred Wind--nothing I've seen captures my current feelings about air quite so well:

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/

Be prepared if you choose to stay with this Episode: There's a lot of yucky stuff here. That's what happens when one discusses his or her illness: there's lots of yucky stuff. But if we're going to be real, we have to be real, so on we go.

For over a year now I've suspected that my blood and, hence, my organs and tissues, have been under-oxygenated. This can be referred to as hypoxia (lack of oxygen in the body's tissues, usually due to hypoxemia, lack of oxygen in the blood), or oxygen desaturation.

Episode 38: Weeds and Wonder, OR Stalking Euell Gibbons

A wrong attitude about nature is almost an integral part of our culture, and all the crying we're doing about the environment is going to come to nothing as long as such an attitude persists.

                                                               --Euell Gibbons, 1972, qtd. in Smith

I'm channeling my Euell Gibbons tonight. Children of the sixties and seventies knew Euell as the craggy naturalist picking cranberries in the snow to add to his GrapeNuts breakfast cereal. We saw him on popular talk and variety shows. And we laughed at Tim Conway's impersonations of him on the Carol Burnett Show.

If you are a child of a different generation, here is a video of one of this iconic forager's commercials to get you up to speed; his cache in popular culture is not greatly diminished today, forty years after his death.

"Ever eat a pine tree?" Gibbons reportedly asks on one of his GrapeNuts commercials, but thus far I've found no video proving it. (A chapter in one of his books, though, is similarly titled.) I've watched the two commercials referred to above, and neither mentions pine. Another claim with this possible myth is that, later in that ad, Gibbons compares the taste of GrapeNuts to that of wild hickories. However, he does say that in the commercial posted above, and I doubt he'd make the same claim in a second commercial. I suspect the true speaker of that line may have been Tim Conway or some other impersonator spoofing Euell. Gibbons does, however, devote one chapter of Stalking the Healthful Herbs to white pine, which he states was a major food for Native Americans, though his experiments with it, he stated, never eradicated its turpentine-like flavor.

N.B. I was recently scolded by a math professor in my writing group when I insisted that Wikipedia is not a reliable scholarly source. He cited a new academic journal article in which researchers compared the information on the popular free, open-source encyclopedia to more authoritarian sources and claimed Wikipedia is just as accurate as they are. I don't believe it, though I'll often go to the site first to gather information, then verify it with the references given in the text or through my own research. In fact, the pine tree commercial Wikipedia cites is linked to its "source," the video posted above in which cattails are the wild food highlighted. In neither that nor the cranberry commercial is a pine tree mentioned. Ever the librarian and, hopefully, scholar, I maintain that quoting from Wikipedia does not enhance one's credibility whatsoever. That doesn't mean the site is useless; it just doesn't belong in a scholarly bibliography. 

See the end of this article for a list of my sources; those providing unique information are also cited within the text of this "episode."

Episode 37: Down the Rabbit Hole Yet Again: On Electronic Health Records and the Digital Patient

First, a disclaimer:  My purpose in sharing my experiences in the illogical, upside-down world of today's U.S. health care system is NOT to denigrate the many fine individuals working as health care professionals--physicians, nurses, technicians, and all the other good folks who support the care of an endless stream of patients, many of them seriously ill.

I've been most fortunate in having access to some of the best specialists in their fields at Johns Hopkins Medical Center and the National Institutes of Health. I salute all who truly care about their patients. No doubt, they are as frustrated as I in finding themselves in this dark maze populated by wacky characters with nonsensical expectations. I know they also despair about the care, or rather lack thereof, this nation gives to its sickest patient of all--its health care system.

Today, the fun show reached another high, given how low it was. That's how it is down the rabbit hole--what's up is down and what's big is small and what's wrong is as wrong as wrong can be.

Don't fall in, Alice! It's scary as hell down there.