Episode 44: How Can a 54-Year-Old Woman This Damned Sick Look This Damned Good?

Okay, I'm taking all of us on a little Mary Dell ego trip today.

Actually, I started this episode a year ago, when Honey also took the photo I'd planned to accompany it. I'm a year older but don't look much worse than I did then. I've moved the photo to the second page of this episode to save virgin eyes from seeing it if they don't want to. Hey, it's not pornographic--just a bit suggestive.

Yes, come with me .... hop on my magic carpet ride to a land where the marvelous science of photography (without any tricks such as PhotoShop) suggests that I may not be so darned hideous after all--certainly not too bad for a gal of my advanced (50+) years. You see, my entire life, I've always felt unattractive--or, at least, the core of me did. I could fake being attractive and convince men I was attractive, but I never felt it deep inside.

And now, ironically--how many ironies does chronic disease rack up? (pun intended)--Answer: A LOT--the attractiveness that others see is doing me a disservice (though I'm happy to have it regardless).

The fact that I don't look like a middle-aged, chronically ill woman means that many health professionals I see once or twice think I'm malingering or trying to get attention or some other stupid shit, and they don't take me seriously. For the latest egregious example of this phenomenon, see Episode 41 and my nightmare consultation with a neurologist at Johns Hopkins Medical Center.

The fact that I don't look like a middle-aged, chronically ill woman means that co-workers, friends, even my sister and one of my sons, neither of whom sees me nearly enough, have hinted at finding my complaints hypochondriac in nature. With my son, I'm thinking it's sort of denial--no one wants a sick mom. With my sister, I think it's just that I'm the youngest and can't possibly know what I'm talking about, ha.

But I love them both dearly, of course, no matter what. None of this is easy to take in, even as I experience it day by day.

Hopefully, given the latest neuromuscular diagnosis, signs, and symptoms, those who know me well no longer doubt me. One thing my mom pounded into my head during the 29 years I was blessed to have her in my life was honesty. And the last thing I want to do is waste medical dollars when so many others need care.

And this pic is TAME compared to all the sexting going on, so no big deal there, Mom!

No, I don't look sick.

In fact, I look damned good.

So how can a woman who looks this damned good really be this damned sick?

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.