Episode 50: Down the Rabbit Hole and In the Third Stage of Grief?

Kubler-Ross's five stages of grief upon learning of one's imminent demise might also be relevant in acceptance of severe chronic disease.

I've gone through the first two, and will no doubt cycle back now and then:

1) Denial - That stage didn't last long for me. It was hard to argue with my symptoms, hard to deny that my body was failing me.

2) Anger - This, on the other hand, is still pretty fresh. I'm not so angry at the gods--I've been blessed in so many ways in my life, and why should I be immune to pain or "injustice," if that's what illness is, when others on this planet suffer so greatly?

I have often, however, been angry at the health care system and at individual health care providers for a variety of valid reasons, many of which have been described here on The Mary Dell Show.

And although I get upset when I start thinking about how a fragmented system has betrayed me, and how individual physicians and practices have made me feel marginalized, I'm moving beyond anger now.

Why get angry? That's just more energy to expend, when I have so little energy anymore at all.

And so I'm moving into that third stage, bargaining.

Episode 49: No DNA Results Yet, But Another Delightful Hallmark of Myotonic Dystrophy (Fecal Incontinence) Warms my Christmas

Merry Christmas!  And Happy Day, if you don't happen to celebrate Christmas.

My Christmas was greeted with yet another symptom of myotonic dystrophy, the particular gem in a group of symptoms that can, in fact, first lead to a myotonic dystrophy diagnosis for many patients: "Digestive symptoms may be the first sign of dystrophic disease and may precede the musculo-skeletal features," state Bellini, et al. (2003) (full reference at end of episode).

In the past, I've suffered this especially special symptom, among other, nearly daily digestive symptoms, to quite debilitating measures.  And then it mysteriously disappeared, for the most part, though occasionally revisiting to remind me how little control any of us has when our bodies lose theirs.

Yes, happy, happy, joy, joy!

This Christmas gifted me with another fun day of fecal incontinence.

It happened just as we'd finished opening presents around the tree with Honey's two kids--his third is, sadly, suffering something along the lines of agoraphobia--fear of leaving the house due to panic attacks, and stayed at her mother's house for the day. Meanwhile, my two, both adults, are 1.5 hours away, one celebrating the holiday with his girlfriend and the other with their Dad, who has a big family filled with my boys' aunts, uncles, cousins--for a Christmas filled with masses of good food and cheer.

Here at Honey's, thankfully most of the kids had cleared the room when, out of the blue, the contents of my guts oozed out of my body into the seat of my Christmas jammies from several years back, my favorites, covered with tiny Miniature Schnauzers but now with something extra, and most unwelcome. I had to ask Honey's son to leave the room, and the look I gave Honey told him all he needed to know.

He'd lived through the times with me when this horrible condition had plagued me for months (several years ago), culminating in a particularly hideous and voluminous "lava" flow while shopping, and my subsequent refuge in a fortunately unoccupied women's bathroom where I had to wash out my jeans and wear them wet back to the car and home, thanking the gods for not exposing myself or anyone else to the humiliation of witnessing the incident. And having a good cry before going anywhere, cold and wet and disgusted.

Fortunately, today, the Christmas jammies could be discarded, and nothing had seeped into the furniture.

I tell this story, hopefully with a little humor, to let others out there with fecal incontinence know that they are not alone.  It's not a topic one discusses in polite company, so, what the hell, we are not polite here at the The Mary Dell Show. We tell it like it is, warts and all. Seeping anuses and all.

After getting myself squared away, I retreated to bed where my hypersomnolence kept me obliviated from the rest of Christmas Day. I couldn't even get up to make my signature turkey gravy, much to everyone's disappointment, though it's now 4 a.m. and I have the juices with which to make gravy for leftovers. Yikes, kind of a weird thing to talk about when I've just described how my body just expelled its own juicy brown liquid!

Turkey gravy, anyone?

Unfortunately, I had another little, NOT catastrophic, episode of fecal incontinence tonight while wearing my NEW Christmas jammies, so they are being washed and bleached as we speak. And this second prompted my need to discuss this worst of symptoms with you, Dear Viewer, my non-judgmental friend.

My DNA test for myotonic dystrophy has been completed, but I still don't know the result. I did, however, receive the bill: over $6,000.  I'm responsible for it because Dr. RQ at Johns Hopkins Neuromuscular Clinic did not believe such a test was warranted, but my local neurologist asked if I'd be willing to pay for the test (about $1,000, he'd told me). He ended up ordering a battery of myotonia tests, which is why it was so much more. I do have a form to fill out that will lessen the bill because my federal disability benefits were recently approved, and those on Medicaid can have the amount reduced.

Perhaps I won't know the results of the DNA test until the bill is paid, or perhaps the company sent the results to Dr. A., my neurologist. At this point, I'm kind of afraid to know. I hate the thought of spending hundreds, possibly thousands of dollars I don't have on a negative test, but I still say it's worth it to know, yay or nay. If I don't have myotonic dystrophy, that's good news, indeed. But if I do have this genetic condition--and I have nearly every sign and symptom, including these digestive ones, of the disease--members of my family, especially those of a younger generation, have a right to know they have these defective genes, if for no other reason than saving them the trouble and expense of a long medical investigation into mysterious symptoms.

And I, in fact, have symptoms throughout my gastrointestinal symptom from my mouth (enlarged tongue) all the way to, well, you know where.

"Myotonic dystrophy (MD) is characterized by myotonic phenomena  and progressive muscle weakness. Involvement of the gastrointestinal tract is frequent and may occur at any level," begins the abstract for an article on these conditions by Bellini, et al, 2006. Our digestive tract involves a series of "smooth" muscles, and these muscles can become weakened in a number of neuromuscular diseases.

As for myotonic dystrophy, "In the upper digestive tract, dysphagia, heartburn, regurgitation and dyspepsia are the most common complaints, while in the lower tract, abdominal pain, bloating and changes in bowel habits are often reported."

Okay:
Dysphagia (trouble swallowing):  Check, but mild and sporadic;
Heartburn:  Check.  Very bad, actually.  Diagnosed by ENT and with a hiatal hernia, and prescribed meds.
Regurgitation:  Check.  I've told doctors numerous times that I fairly frequently cough up stomach contents, but no one, apparently, cares about that.
Dyspepsia:  Check.  Upset stomach, basically.  Very frequent.
Adominal Pain:  Check.  Frequent.
Bloating:  Check.  Frequent.  Often with very forceful belching.
Changes in bowel habits:  Well, that's the topic of the day, isn't it?

I went through months, perhaps as much as a year, with fecal incontinence as well as daily watery diarrhea--I don't think I had a normal bowel movement that entire time. No cause was found, and eventually it sort of resolved, though occasional bouts, as I said earlier, returned.

Over the past year, I'd say I've been constipated more frequently than I've had to deal with diarrhea, but I've had episodes of both.

I'm always aware of my digestive system, on one end or the other, and I don't want to even think about my digestive system.

But when yours isn't working, you will think about it. You have to. Or you may find yourself very embarrassed one day. Of course, thinking about it won't guarantee you won't have an embarrassing moment, such as mine this morning when I had to ask my step-son to leave the room. I am just so fortunate to have an understanding, loving partner who immediately knew what the problem was and helped get me into the bathroom.

All in all, it's been a good Christmas. Parts of it have been sad, including a weird rift with one of my sons that I don't even understand and that hurts pretty bad. I'm trying not to think about that; I'm trying to stay happy for the season.

I'd hoped to bake cookies all day Christmas; instead I was in bed, in that nether-nether world where I find myself more often than in waking reality these days.

And then there's the fecal incontinence thing. At least I was home, in the bosom of part of my family, and not out in some mall, when the flood gates opened.

Let's hope for a Happy New Year.

A new beginning, on my son's birthday, the first baby born in Washington, DC, in 1983. I love you, little one now grown, as well as your big brother. The two of you have brought more blessings than I can count into my life, and you are the very best of my accomplishments. I wish I weren't falling apart, and I'm sorry you have to deal with a falling-apart mom. This is not what I would have wished for you two or for me.

All we can do is try to deal with our falling apart with a little humor. Even the gross stuff.  Which is what I tried to do today, despite never finding scatalogical humor very funny.

Har har har on Ho Ho Ho Day.

Here's a group that has been fighting back against often debilitating Irritable Bowel Disease with humor for years--and I say, Cheers and More Power To You, Great Bowel Movement!

Let's hope this New Year gives us a Depends-free twelve months--God bless all of you who have to resort to these measures; I imagine I'll be joining you soon.

Being chronically ill ain't fun, sports fans.

___________________________

Bellini, Massimo, et al. "Gastrointestinal Manifestations in Myotonic Dystrophy." World Journal of Gastroenterology 12:12 (1821-8), 2006.

Degraeuwe, J, et al. "Faecal Incontinence Due to Atrophy of the Anal Sphincter in Myotonic Dystrophy." Acta Gastrtoenterology Belgium 74:1 (88-90), 2011.

Episode 48: I Am Not Alone Down the Rabbit Hole: THE ATLANTIC's "Doctors Tell All--And It's Bad"

The Atlantic recently published an essay by a patient (also the daughter of a patient) whose experiences in today's health care system are as corrosive as those I've been pondering in The Mary Dell Show since Day One.

In fact, the author, Meghan O'Rourke, uses the same metaphor that I have for years for that health care system: "In the hospital, I always felt like Alice at the Mad Hatter's tea party: I had woken up in a world that seemed utterly logical to its inhabitants, but quite mad to me." Those words are nearly verbatim from one of my Down the Rabbit Hole episodes published long ago.

Original illustration of the Mad Hatter's Tea Party
in Alice's Adventures in Wonderland

O'Rourke also compares the amount of blood she gives to the stores of a vampire, as I did after having phlebotomies (blood letting) as treatment for my polycythemia. And how many times have I compared "essential or idiopathic this or that" to doctor-speak for physicians' not knowing what the hell is going on?  As, in fact, she does as well.

O'Rourke invokes the same phrase I often complain about when describing life Down the Rabbit Hole of today's medical system, one dispensed by that System like sugar pills:  "patient-centered care." That, I'm afraid, is a stark euphemism for "the patient comes last."

And O'Rourke agrees:  "For a system that invokes 'patient-centered care' as a mantra, modern medicine is startingly inattentive--at times actively indifferent--to patients' needs."

Well, isn't that exactly what I've been saying all along here?  In fact, the article started to get to me--it was as if O'Rourke had pulled phrases right out of my own record, though I'm not accusing her of doing that. It's simply, I suppose, that another literate patient has been given the run-around I have, and the same allusions and phrases occurred to her.

Big surprise.  All patients are being given that run-around.  Nearly every patient in today's health care system will fall down that Rabbit Hole.

Episode 47: Hypersomnolence, OR Sleeping Too Damned Much, OR I Want My Life Back

I've mentioned hypersomnolence on the show many times, but what exactly does it mean?  How does hypersomnolence affect one's day-to-day life?

A typical day.

Of course, "hyper" means too much of something, and "somnolence" means sleepiness. And I have been dealing with this strange and debilitating condition for the past six-plus years. The official diagnosis is idiopathic hypersomnolence; "idiopathic" simply is medspeak for "We don't know why the hell it's happening." More frequently than not, it seems, idiopathies end up being caused by brain pathologies, and recent studies on this condition point toward the same.

Another term used is primary hypersomnolence; this means the problem is due to its own cute self and not something else going on in the body.

Another typical day.

Hypersomnolence can also occur due to other health conditions, such as cancer, in which case it's known as secondary hypersomnolence. Whatever is happening to me is slow-moving, and most cancers aren't, so I'm not overly concerned about that. As any faithful viewers know, I suspect I may have myotonic dystrophy and am waiting for my DNA results as we speak. This is a genetic neuromuscular condition, and one of its hallmarks is--you guessed it, sports fans, hypersomnolence. But whether or not I have myotonic dystrophy, there's no doubt (and I have scientific evidence, as described below) that I have, indeed, been blessed with hypersomnolence.  Lucky me.

And, yes, yet another typical day.

I've always tended toward sleepiness, particularly having trouble waking and getting out of bed in the mornings and, in recent years, the afternoons and even some evenings. Yet I managed to get going all through school and most of my work years, kicking and screaming all the way. I used to sleep in until 1 or 2 on the weekends and would feel a little guilty for it--but that was nothing compared to what I've experienced since 2006 or 7.

Episode 46: With Accolades and Self-Flaggelating Gratitude for the Most Eminent Human Doctor A, OR Thanks, Good Doctor, for the DNA Test

The title just about says it all. But, for the long version, read on:

This past Wednesday I saw Dr. A for my routine neurology checkup--this one, of course, the first after having met my nemesis in a bizarrely unhelpful neurologist at Johns Hopkins Neuromuscular Clinic, which actually made this local appointment slightly less than routine.

Yet I felt defeated before going in. What would be the point of trying to convince Dr. A that Dr. Red Queen (RQ) of Hopkins had not properly examined me or considered my medical history when she'd come up with her unequivocal veto of any possibility that I might actually have myotonic dystrophy?

If the woman had spoken to me with the slightest curiosity or compassion, I might have more easily accepted her assessment. Unfortunately, I maintain to this day that she subjected me to quite the opposite.

But this is not meant to rehash a story already told in a previous episode.

The issue at hand today had everything and nothing to do with Dr. RQ.

Trying to convince one doctor that another has treated you badly is akin to having to convince someone of your sanity.  Try it sometime.

However, I've have learned through long, hard experience that doctors are not infallible, beginning when I, at twenty years of age, disagreed with my eldest son's pediatrician who told me my firstborn, then about five months old and about whom fellow church members had expressed concern he might have hydrocephalus, was merely a "right-handed baby with a funny-looking head." That's exactly what he said--I realize now in a possibly unfortunate attempt to sound lighthearted and relieve my worry.

But I had reason to worry back then.  My insistence that my baby be seen at Children's Hospital National Medical Center revealed his skull was closing up prematurely and, if it weren't opened by a surgeon, would result in terrible brain damage--a condition called craniosynostosis. Oh, and he wasn't just "right handed"--he'd held his chubby little fist to his chest because his premature birth had resulted in a cerebral hemorrhage. His entire left side was partially paralyzed. And the reasons for all of the problems, I might add, are consistent with pregnancies in women with myotonic dystrophy.)

My point is this:

I don't always agree with a physician tells me, though if one were to mount a study on the many encounters I've had with doctors of many types and specialties one would conclude I've been a respectful and mostly cooperative patient. I'm just not willing to give up my right to think for myself.

Episode 45: On Being a Woman in the Face of Debilitating Disease, OR That Pesky Hypothalamus!

I'm in trouble with one of my sons again. That is, I think I am, though I do tend to be slightly paranoid about his feelings for me since we don't get to see each other very often.

And probably rightly so--the being in trouble, I mean. I used a rather fun, risque photo of myself to illustrate a point on one of the episodes of this show, and apparently that made my 30-year-old son feel icky, especially after some of his friends, who are also my friends on Facebook, apparently razzed him about it. Now, my son is thirty years old--I'm not talking about a child here.

I didn't think the photo was even close to pornographic, but I can understand his discomfort. But nowadays body parts are displayed all over the Web and in text messages ad nauseum, so I don't think my playful photo--uploaded simply to make a rhetorical point, and it took me a year to get the guts to do it, but I made the sacrifice for my art--is really that scandalous. One must be edgy these days, mustn't one?

After all, said squeamish son DID do the lead singing and guitar playing in a punk band all night in one of the bars in the town where I live wearing nothing but a DIAPER, so it's not as if he leads a life of modesty!

Anyway, hopefully, I'm imagining all that. I love my kids dearly and don't like any hint of being on the outs with either of them.

Yet I still feel the need to write about being a woman--a relatively young and sexually active (though less and less so of both)--woman who is coming (no pun intended) to grips with the effects of chronic disease on her sex life.

The effect, in short, is numbing--a metaphorical cold shower on the hormones and neurotransmitters responsible for sexual arousal and pleasure. This, at least, appears to be the culprit in my case, having recently been diagnosed by my neurologist with progressive (a nice way of saying "degenerative") neuromuscular disease.

My faithful following (of statistical vampire sites, at least) knows that I've been convinced for some time that my hypothalamus is going wacko.

Yes, sports fans, my HYPOTHALAMUS, of all things, is failing me.

I've been convinced of this for some time, even before my neurologist diagnosed me with this neuromuscular disease of unknown etiology, still to be determined.

My money is on myotonic dystrophy based on a reasoned review of my medical history and the MD disease profile. Not tangential is recent proof that myotonic dystrophy's effects are caused by imbalances in, you guessed it, that cute little hypothalamus.

It's time for all of us to become friends with our hypothalamuses!  Now, there's a great word.  Or should it be "hypothalami"?

So, what is a hypothalamus anyway? 

Well, you have one, or you wouldn't be reading this right now. Or doing anything else. Like breathing, for instance.

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.

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.

Episode 36: Slaughter, Again. Again. Please Tell Me, Not Again

My Aunt Ruth and Uncle Freeman met on a shooting range in the 1940s. He, a tall, handsome, intelligent man and she, a drop-dead beauty of Norwegian descent. Damn those puns! They crop up everywhere, like shooters in malls and schoolyards. Violence even runs through our language--drop-dead gorgeous was my Aunt Ruth, and not only that:

Ruth (as I called her) was a dead-eye shot.

NRA members both, Freeman and Ruth married, settled down a few blocks from my parents' home, and got to work producing three handsome, strapping boys. The boys grew up as mini-sharpshooters, accompanying the folks to gun ranges and competitions, and taking part themselves.

Ruth, a crackshot, outshot all the women and quite a few of the men, often Freeman himself. In fact, she was so damned good she was Captain of the U.S. Women's Rifle Team. I will dig up a copy of her  photo in the Washington Post, and you'll see what I'm talking about.

But Freeman and Ruth didn't just shoot guns. They loved to round dance--a sort of square dance--and Ruth's wide-skirted shimmering dresses and layers of petticoats billowed and swirled as my uncle twirled his Norwegian Annie Oakley around the room with others who shared their love for the dance. After she died, Ruth's son Don spoke at Arlington Cemetery where she was to be entombed, the space beside her reserved for her husband, who would receive his own ___-gun salute after his funeral in the little stone chapel in the midst of those green hills and endless white slabs of marble not too many years later. "My mother grew up in northern Michigan, the child of first-generation Norwegian Americans, and she loved to figure skate. As a boy, I'd watch her on the ice--" Don's voice cracked--"and I thought I'd never seen anyone so beautiful in my life."

Freeman had survived a stroke many years before, and they'd moved to Leisure World to make things easier for him. Ruth took care of him while he continued his passion since retiring from the United States General Accounting Office--genealogy. He'd traced my mother's line back to the 9th Century in some lines. The two of them traveled to Europe and Norway to scour court records and cemeteries for blood links to the past, and they learned that Ruth derived from early Norwegian nobility. Freeman typed complicated lines of family history on a manual typewriter with the two fingers still functional enough after the stroke to do so.

They traveled, they danced, they researched, they visited and entertained their family, they went on Caribbean cruises with my parents during which the fine dining and dancing never stopped--they were, in short, very well-rounded (not to pun their form of dancing) human beings who happened to enjoy guns but didn't make them the end-all and be-all of their existence.

Episode 35: Weed or Wonder? Early Spring Greens in Appalachia

Weed or Wonder? is a column I wrote for the Appalachian Independent for a couple of years. The online newsletter was developed by a group of concerned citizens--concerned about the journalistic integrity of the local newspaper and wishing for fresh voices and more divergent views via a "Dialogue of Democracy."

My true passion is our natural world, from turtles and newts to tigers and owls. And plants. Particularly beautiful flowers. Particularly wildflowers. Particularly edible and/or culinary plants. Particularly gardening. Particularly foraging. Particularly fungi.

But fungi will have to wait for another episode--especially since my hours of scouring the forest floor today led to the discovery of not one single morel. Still too early, for one thing, and for another: I've never found a morel in my woods. Yet my woods should  produce morels. My woods have a northeastern exposure. My woods are hardwoods, particularly oaks and maples. My woods are moist and filled with secret little woodland plants known to grow where morels do. Morels, where art thou? Have you merely hid beneath the leaf litter each spring, camouflaged from my inexperienced eyes?

This year, if a morel exists on my property, I will find it. Now that I no longer can work, I can certainly spend an hour or two in the woods, even if my butt is glued to a boulder because I don't have enough energy to risk my ankles to the deep spring-and-boulder field on the mountain rising behind my "cottage." And now that fungi have stolen two entire paragraphs--they have a way of sneaking up on us, don't they?--I'll list below the plants I've found thus far this spring, and they are few and far between at the moment--we had snow yesterday, for heaven's sake.

Morels - Fungus Par Excellence

Episode 34: Something Other than Health Problems: Muskrats! Field Voles in the Cottage!

Never did I intend this blog to be so consumed with health issues--BO-RING! But those have consumed me of late, mostly because of not having a definitive diagnosis to explain all my increasingly debilitating symptoms. At last, we seem to be on the right track vis-a-vis both of those things. I'm still convinced it's mytonoic dystrophy or something very similar, and I'm waiting for a date for my consultation at the Johns Hopkins Muscular Dystrophy Clinic, which wonderful Dr. A is referring me to. Alas, I thought a DNA blood test would be cheaper than a spinal tap, but he told me they run something like 2 grand, and he wanted an expert to evaluate me and test me.

More about that in a future episode.

So, WHAT ABOUT MUSKRATS, the title of this episode? You know me. Digression is my middle name.

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.