Episode 67: On Adult Children with Mental Illness

I walk a fine line on this topic because I don't want to violate my son's privacy. I only identify him as J., and I haven't identified my own last  name, let alone his (as they differ), so I hope this episode of The Mary Dell Show respects both the wonderful person he is as well as others who have struggled with the devastating pathologic conditions of the mind.

And, because I do share this blog with a couple of closed Facebook groups I'm in (for hypersomnolence, etc.), I'll just say that J. is very lucid these days and has, until quite recently, had his issues very well controlled on his meds, and during that time has given me permission to write about his plight.

Of course, as biology has shown in recent years, particularly since the advent of the functional MRI (fMRI), "mental illness" is truly biological illness. And, as in any illness, psychological factors come into play as the condition manifests itself.

Examples of functional MRI images of structural brain changes in schizophrenia from Dialogues in Clinical 
Neuroscience at http://www.dialogues-cns.com/publication/understanding-structural-brain-changes-in-schizophrenia/

Episode 66: A Familiar Interest, NOT Obsession - Mary Dell MD (Medical Detective) and the Neurolobitch

Okay, okay, okay.

I know my loyal viewers (all zero of you) will know that I do tend to wax diagnostic when it comes to my health problems. So much so that, for quite a while, I was convinced my neurodegenerative symptoms (with numerous periventricular white matter lesions on MRI, hyperreflexia, mild myotonia on EMG, and other neurological signs) might well be caused by myotonic dystrophy.

Given my family's physiologic resemblance to the facies of persons with myotonic dystrophy, the logic of a DNA test seemed, pardon the pun, a no-brainer, but apparently not to the neurologist aka neurolobitch I saw at Johns Hopkins Medical Center's Neuromuscular Clinic about a year ago. (For more on that miserable experience, see Episode 44. I still haven't named her "for real," but I'm sorely tempted these days.)

As anyone with a "mystery disease" knows, it's frustrating when a definitive diagnosis is not found for the profound, disabling changes to one's body and, at times, spirit--though I do my utmost to ensure that I don't also succumb to depression, no matter how hard some days can be.

Add to all that the fact that I worked (when I used to be able to work) as a medical librarian, among other careers, and in those years gained expertise in researching medical topics for physicians, other health professionals, and the public.

So, excuse me. I think an occasional foray into the possible causes of my day-to-day miseries is hardly obsessive. Of course, tell that to said Dr. Neurolobitch at Johns Hopkins.

The fact is, my once-subtle neurological symptoms may have started very early in life, beginning at 18 months with severe dehydration to the point that I was in quarantined intensive care for three full days. The dehydration had been caused by a severe virus during which I'd apparently puked and shat myself clean through.

Viruses are possible causes of multiple sclerosis and other neuro diseases, so perhaps that was the culprit.

Popping up again at 5 years old when diagnosed with amblyopia due to strabismus, a common eye condition in children that is caused by neuromuscular weakness. My cross-eye, or squint, is not overly noticeable, thank goodness, but I am legally blind in my left eye (God preserve the right!).

You can see my strabismus (cross-eye or "squint") here--
it's getting worse as I get older!

Hinting at itself here and there throughout my childhood, characterized by frequent sick days from school and undiagnosed ADD, another neurological condition. My early report cards, as well as many of the issues I dealt with as a kid, are textbook for ADD, and I've been diagnosed as an adult. I have a fairly full-blown case, actually, and it's been exacerbated in recent years, probably from the white matter lesions in the ol' noggin.

Rearing its ugly head again when happily pregnant with my first child at 19 years old and unexpected complications that could be attributed to neurological problems (and are commonly found in pregnant women in myotonic dystrophy, which initially led me down that path) nearly cost me my pregnancy and my firstborn son, who was born prematurely, given a 50/50 chance to survive his first 24 hours, and himself developed within a few months a severe neurological condition, craniosynostosis, along with a cerebral hemorrhage that left him partially paralyzed from the time he was an infant. (J. is a miracle story in himself; that is a story I need to write--but I'm hoping he'll write it himself, now that he's an amazing 35-year-old man.)

My second pregnancy three years later was also difficult, though thankfully full-term, with odd problems such as an almost total inability to eat, very little weight gain, and the most debilitating headaches I've had since (though I had migraines in my 40s as well).  Second-son A. was born with a couple of issues and developed a few more in childhood, including ADD.

Remaining mostly silent through the rest of my twenties--but who would know when in that one decade I experienced the birth of said beautiful son J. at the age of 20, dealt with his myriad physical problems, including two neurosurgeries at 7 and 9 months of age, had my second beautiful son A. at the age of 23, dealt with his health issues, went through another neurosurgery for J. when he was 5 and I 24 years old, lost my dad to a sudden heart attack when I was 25, separated from (and eventually divorced) my husband also when 25, went through my mom's breast cancer and mastectomy beginning a year or so later, and then lost my mom to liver and pancreatic cancer when I was 29.

The only significant neurological issue I can think of during the joy of my twenties (SARCASM, Sheldon!) was the onset of a very weird sleep problem I only recently identified as hypnogogic hallucinations. These are true hallucinations that happen as one is falling asleep due a criss-cross in the brain states of wakefulness and REM sleep. They are associated with narcolepsy, which I actually qualify for based on a Multiple Sleep Latency Test (MSLT) administered a couple of years ago; however, my diagnosis is idiopathic hypersomnolence (IH) based on that same test. The test has you sleep for a while during the day, then wake for a bit, then sleep, then wake, etc., and the amount of time it takes for you to fall asleep during those naps is calculated. Anything less than 7 minutes is diagnostic of either narcolepsy or IH, and my average was 4 minutes.

Fortunately, the hypnogogic hallucinations, which were absolutely terrifying (men breaking into my room to do me harm, and they were just as real as anything I've seen in true wakefulness), stopped after a couple of years. They began the night Mom died, though that first one was actually very comforting and arguably NOT a hallucination but a visitation from my mom, who came to the side of my bed and told me not to worry, she was fine. The ones that followed, though, were beyond frightening.

In my thirties and early forties, I began experiencing a profound lack of stamina. I honestly thought it was because I was getting "old" (funny in retrospect, now being fifty-something!). My co-workers told me they worried they'd walk by my office and see me dead at my desk--that's how bad I looked (and felt). I attributed my fatigue to my rather full load--I was a single mom of two beautiful, challenging boys, a summa cum laude college student cum part-time secretary cum program associate/coordinator cum graduate student cum grant writer cum graduate student in a second discipline cum academic reference librarian cum medical librarian cum English professor cum world traveler (Europe, Mexico, India).

After sending a Christmas letter out during my thirties, I received a reply from a friend who told me my letter sounded like a "cry for help." It probably was. But I would not be denied. I wanted it all. No doubt, stress has played a huge role in my failing health.

One day in 1996 a nurse in my office took my blood pressure and told me to go to the Emergency Room immediately, where I clocked in at 183/113. Oh, it got much worse over the years, but that was a startling number for someone who'd always had normal pressure.

My uncontrolled hypertension would take a big toll on my life from that point forward, resulting in numerous hospitalizations, heart problems, and a series of medicine cocktails that would keep my pressure fairly normal for a while until they didn't, and then it was out of control. My last semester teaching, it was running 200+/120+ much of the time.

It took thirteen years for the reason for this uncontrolled hypertension to be discovered. Is it any wonder I don't always trust what even the best doctors are telling me?

After all, son J. had been UNdiagnosed by his pediatrician even when I'd raised concerns about his head size and his refusal to use his left hand for anything, including reaching for toys. Trying to reassure me, I guess, the good (ahem) doctor told me, "Oh, he's just a right-handed baby with a funny-looking head."

Um. WRONG. A second opinion revealed J.'s craniosynostosis and left hemiparesis and was followed by those neurosurgeries and years of physical therapy.

I repeat:  Is it any wonder I don't always trust what even the best doctors are telling me?

So, I was almost fifty when I finally learned the cause of my hypertension--an adrenal problem known as hyperaldosteronism that actually begins with a problem in the brain. A problem, in fact, in the hypothalamus, which for some time I've theorized is the culprit in many of my problems. (See Episode 46 for more on that pesky hypothalamus.)

In my hypothalamus, according to my docs at NIH, an abnormal secretion of the hormone CRH begins a cascade of disasters that results in my adrenals becoming hyperplastic (too big, with too many cells) and secreting too much of the hormone aldosterone, which leads to intractable hypertension, heart problems, and god knows what else. I'd never been happy with the "essential hypertension" B.S., so finding the cause was good if a little late for my heart and kidneys.

The hypothalamus, by the way, is known to cause many of the problems in multiple sclerosis (MS), which my neurologist says he'd diagnose me with if my MRI had shown lesions in my spinal cord and not just the confetti he'd found in my brain. However, I've since learned you CAN have MS without spinal lesions, so maybe, in fact, that IS my mystery disease.

Also during my forties I'd learn I have Hepatitis C, obviously not a neurological problem, but one I'd acquired quite possibly due to these underlying neurological problems when the placenta after J.'s birth did not fully detach from the uterus and led to severe bleeding--just one of the weird problems during that pregnancy that are, in fact, listed as common in pregnant and birthing moms with myotonic dystrophy, as well as other neurological conditions. I was given two D and C's (uterus-scraping procedures) during which I needed extra pints of blood (transfusions) and acquired the Hep C virus in those early 1980's days before the blood supply was screened. Thank God it wasn't HIV.

No doubt the Hep C doesn't help matters, neurologically or otherwise--but I hope I'll be a candidate for all these new treatments coming out.

Finally (I hope), in my forties and early fifties I would be diagnosed with my arguably most severe health problems, which I've described on The Mary Dell Show ad nauseum, so I'll just quickly list them: cardiomyopathy, kidney disease, and this mystery neurodegenerative disease (among other, somewhat less serious conditions).

The heart and kidney issues aren't surprising, given the years of astronomical hypertension I've endured. And, by the time my neuro problems were diagnosed by the eminent neurologist Dr. A (the antithesis of Dr. Neurolobitch, by the way), I wasn't surprised. I'd done hours and hours of research on my signs and symptoms by then and was certain many of my problems originated in my brain. 

All in my head, yes. But not made up, as Dr. Neurolobitch implied during my consult with her.

My point in recounting all this is that I now believe my neurological issues began much earlier than anyone, including me, had thought--from the time I was a baby in quarantine with a nasty virus, perhaps.

Another point that I cannot help but bring up is the way Dr. Neurolobitch treated me during the 40-some (if that) minutes she consulted with me. Given the numerous correlations of my health problems (and some in my family) with those of myotonic dystrophy, I don't think a DNA test for that condition was out of order. In fact, I'd found medical guidelines--the Bible for docs these days--that pointed to exactly that.

In addition to that good (ahem) doctor's skepticism about every single thing I told her, she informed me that my neurological exam was completely normal--this despite highly reactive reflexes the neuromuscular fellow in the room commented on several times.

My local neurologist had already found hyperreflexia, so Dr. Neurolobitch's ignoring this calls into question every single other thing she "didn't" find during her exam.

Dr. Neurolobitch held firm to her NO DNA TEST decree, so that I am now paying, or would be paying if I could find the name of the credit bureau to which my bill has been referred, for having the DNA test done on my dime, despite having no income at the time due to my disability and now drawing a meager but life-saving amount each month from Social Security.

It was no skin off the doc's perfect white teeth for her to order that test, and I've seen forums in which that test was, in fact, ordered for patients at Hopkins with only hints at myotonic dystrophy, but she was far more interested in being RIGHT and putting me down, given my medical librarian theories, than she was in following proper guidelines.

Finally, to appease me that day, Dr. Red Queen (as she is known in my previous episode on that visit, in reference to my series on today's medical system--Down the Rabbit Hole) said she'd send me for an EMG (a painful test with needles stuck into your muscles) that she was certain would be normal.

Wasn't she surprised when that test DID indicate mild myopathy? Even with that, she still wouldn't order a DNA test for me, which is why I still owe money for one.

Although Dr. Neurolobitch Red Queen did end up being right about the myotonic dystrophy--and thank God, since the main reason I wanted that test was that I was concerned about my sons and nieces, since the disease is hereditary, her supercilious attitude was way out of line.

I dunno, I think curiosity is an important attribute in a diagnostician. Instead, this woman had mocked me from the moment she walked in the, an experience unlike any I've ever had in my many, many doctors' visits over the years. The most overt was when I told her about the cranial neuropathy I'd been experiencing--a weird, electrical impulse shooting down the side of my nose and across the top of my teeth--and she cut me off, saying "Yeah, yeah, yeah."

I shit you not. I was as shocked as you are. But it happened.

After being the object of her obvious, shrivelling skepticism about that and everything else I said to her, and then, adding insult to injury, telling me my neuro exam had been normal, I asked her,

"Well, why then did my neurologist say he'd diagnose me now with MS except that I have no spinal lesions?"

The look on her face was priceless, but she had a ready answer: "I've been consulted about myotonic dystrophy. I have nothing to say about that."

Really?

No matter what my referrals might have been for when I've seen other doctors at Hopkins, they've all at least attempted to find out what might be the cause even if it wasn't exactly what was thought at first.

Even the best (and most gorgeous) diagnosticians go down a few closed alleys now and then before arriving at a correct answer. It's called the scientific method.

Now, HERE's a diagnostician!
And don't point that thing if you're not going to use it, Dr. House!

Any patient is due basic respect from a physician. I'd be fine with deleting every snarky reference to Dr. Neurolobitch if she'd admit she'd fucked up when she saw me.

In fact, I'd say the Red Queen had more to learn from my visit to her than I did.

I doubt, though, that she's the type of person who could admit she SUCKS at taking histories and treating patients as human beings.

So I'm a medical librarian that came up with the theory of myotonic dystrophy and was wrong.

Well, guess what? Dr. Neurolobitch's perfect arc of a life that led her to an important position at Johns Hopkins didn't prevent her from also being WRONG--about my hyper-reflexes, my myotonia, and my diagnosis of degenerative neuromuscular disease.

And wrong about me. I am not the attention-seeker, time-waster, and malingerer she obviously believed me to be.

Maybe I'll never have a definitive diagnosis. I've seen enough posts about patients seeking diagnoses, particularly in neuro conditions, to know that mysteries are not always solved.

However, after reading that MS, in fact, does not HAVE to include lesions in the spinal cord, I think I'm just going to say I have MS from now on.  I certainly have many, many of the signs and symptoms, and it's easier than saying to someone, "Well, I have some kind of neurodegenerative disease that no one can find the name for."

Simplifies things, doesn't it?

And, while labels can be damaging, anyone with a mystery disease will tell you that a diagnosis is hugely helpful.

I, at least, remain curious, but I'm also resigned. Whatever is happening isn't going to be cured, whether it's MS or myotonic dystrophy or any other neurodegenerative disease. It just would be nice if someone cared enough to help me find out what it is. Is that too much to ask of the so-called best physicians in the nation? Is it too much to ask that they, too, be human?

From now on, I'm having my docs refer me to the University of Maryland Medical System rather than Hopkins. As physicians in a teaching institution, maybe they will demonstrate enough curiosity to help me find out what I can call this thing that is taking away my life, day after day.

___________________________

P.S. Curse you, Blogger!!  I had a much pithier version of this episode published that I lost, and there's NO WAY to get previous versions. Talk about frustrating! Time to start composing in a word processor. What a pain.

Episode 65: Healing Nature, Ferns, and Fairies

Healing happens when we ingest certain foods and medicines, but many other factors come into play when a person is fighting for his or her health, as have I for some time.

Healing, however, does not necessarily come from what we put inside our bodies; healing can come from without. My wonderful massage therapist Hania is a case in point--after an hour under her ministrations, I feel like a new woman.

In my case, though, the greatest sense of healing comes to me while in the forest. Yes, many of the plants I've identified in my woods and yard do have medicinal properties, but in this case I'm talking about healing on an aesthetic and spiritual level. And this is where ferns and their allies come in.

Ferns are not edible except as fiddleheads, the newly emerging sprouts in the spring, and only two or three species of ferns produce palatable fiddleheads:  the ostrich fern, lady fern, and, arguably, bracken. Eating fiddleheads of other ferns may make you sick.

But ferns are healing to me without their ever touching my body, much less going inside it. A woodlands filled with ferns and their allies, moss and Solomon's seal and Jack-in-the-Pulpit, to name a few, is not just a forest; it is a sanctuary.

Although there's no lake in my yard, my woods remind me of one of my favorite lines by one of my favorite authors in one of my favorite essays--one I can't decide whether or not to teach this fall given its "old-fashionedness" (however, this is also a point in its favor).

In "Once More to the Lake," E. B. White describes an early morning on the lake he'd visited as a child. Of moving through the waters in his canoe, E. B. writes that he is "keeping close along the shore in the long shadows of the pines . . . being very careful never to rub [my] paddle against the gunwale for fear of disturbing the stillness of the cathedral."

That's how I feel about my woods. A cathedral with a ceiling painted not by Michelangelo but by the filigreed limbs of maple, basswood, and black oak.

I have been unaccountably blessed in life to have purchased my modest home, my "cottage," as I refer to it, which sits on the edge of a forest. With its northeastern exposure, my wooded mountain slope produces countless members of woodlands species.

It is here, while I sit under the green hardwood canopy on one of the huge sandstone boulders scattered across my property, that the stresses of hypertension, cardiomyopathy, and neuromuscular/degenerative disease fall away from me. No longer am I Mary Dell, individual human with compromised vigor and health; I am a part of the forest, this vital ecosystem, this magical place where fairies still roam.

I breathe in the ancient air, knowing my landscape of ferns and moss is one of the oldest to exist on this planet. I breathe in the rich scent of humus--that moist, nearly black soil resulting from the slow decay of yearly leaf litter, fallen from trees that in autumn turn my little mountainside gold and red. I breathe in the eons of this planet in this sacred place. I breathe in the healing that comes from nature's undiluted elements.

"My" woods--highlighting hostas; I will post a new
photo filled with ferns and moss soon! You can see
a few fern fronds on the right here, though.

I'm thinking that "nature therapy" needs to become more emphasized for the chronically ill--for anyone who is in need of healing, in fact, whether mental or physical. The idea formed (though I realize now it's not an original one on my part) after watching a Facebook video in which several firefighters grant the request of a man dying in a hospice. They roll his gurney with him, gaunt and pale and looking hundreds of years old, lying there, from the pavement to a wooded path, and then they take him through the woods. The man's dying wish was to be outside among the trees and flowers and underneath the blue sky, not a bright white ceiling with blinding hospital lights.

Where would you rather die?

So that got me thinking. It's a crime, really, how we close up oldsters in ever-smaller spaces that have little to no access to the wild, wonderful outdoors--or even a nice, tame park. I'm struck when watching older television shows, and some more current ones from the UK, in which persons trying to heal spend time in sanatoriums or other spaces that include expanses of grass and gardens and woods--and the sick persons can be found outside on a bench, or even sitting in a wheelchair, not stuck in bed in a tiny airless room.

Nowadays, sick equals small, supposedly sterile places. And that's just wrong.

In fact, I found a Web site, naturetherapy.org, that describes the very approach I envisioned. It's somewhat annoying that they have trademarked the term "Nature Therapy," which seems so simple it shouldn't get a trademark, but so be it. At least the healing arts are on to this wonderful approach.

The healing aspect of the forest doesn't end when I leave it. My healing also comes from learning all I can about the plants in my woods and anywhere else. While it's certainly possible to find healing in simply sitting outside and soaking up the sunshine and perfumes and microscopic things-we-know-not that check the degenerative processes (I have to believe), another way of connecting with and becoming part of "nature" is learning as much as we can about it. (I use "nature" in quotation marks because we are ourselves a part of nature, of course; we cannot truly be separated from it--but we humans do a very good job of removing ourselves from our Mother Earth with structures and pavement and ideas favoring urban life and man's "primacy" over everything else on this blue marble.)

Jean-Jacques Rousseau, the French philosopher whose ideas helped spawn the French Revolution (and the U.S. one, actually, through English writers who took up his ideas), called botany "the salutary science," or the "remede dans la mal" (remedy for illness). That was in the 1700s, for heaven's sake! Why have science and medicine taken us so far away from our valuable relationships with the plants that surround us and through which our planet, and we humans, breathe?

Well, so much for philosophy. No doubt you'll hear more of these ideas on upcoming episodes.

In the meantime, here I will mention the ferns I've found on my property, which may or may not be of interest to you, Dear Viewer--but call this my virtual plant collection. Rousseau also recommended this nearly lost diversion; gathering and pressing flowers and plants was a pastime of his while in exile from France for his revolutionary ideas. This is a gentle activity that can be done even by the likes of me, as weak as I've become in the last few years.

And so I've started my pressed plant collection by attempting to preserve fern species in my yard. I'll post photos if they turn out.

Ferns are notoriously difficult to identify. Since I haven't positively identified all the ferns in my yard, I'm listing some that may well grow there, based on descriptions and photos from a wonderful Web site, Discover Life.

I'll put a question mark next to those I'm unsure of and, if I make a positive ID, will then take the question mark off. Obviously, all of this is far more useful to me than you, so feel free to go on to another episode of The Mary Dell Show!

Ferns Found on My Property

Eastern Hayscented Fern - Dennstaedtia punctilobula

Glade Fern? - Diplazium pyncocarpon

Goldies Woodfern ? - Dryopertis goldiana

Intermediate Woodfern? - Dryopteris intermedia

Interrupted Fern ? - Osmunda claytoniana

Lady Fern?

Marginal Woodfern ? Dryopteris marginalis 

Mountain Woodfern ? Dryopteris campyloptera

New York Fern ? - Thelypteris noveboracensis 

Northern Maidenhair Fern - Adiantum pedatum

Rock Cap Fern - Polypodium virginianum - I discovered this darling little fern on a boulder behind my house and transplanted a small amount to a rock in my woods-edge garden. It's done extremely well and has even spread a little.

Spinulose Wood Fern ? -  Dryopertis carthusiana

Virginia Chain Fern ? - Woodwardia virginica

Ferns I've Found In the Area (Not in my Yard)

I am more certain of these IDs because they were impressive finds, and ones that don't look much like others.

Lycopodiella appressa - It took me a while to identify this strange-looking plant. Little did I guess it's a type of fern (well, fern-ally, actually)! I found it in the Savage River area near Honey's summer place on the River.

Hanging Clubmoss, Creeping Cedar,  - Lycopodium digitatum - (Actually, a fern ally, not a fern per se) - This is a creeping plant with needles or leaves (I'm not sure which) that look like cedar. This grows very close to Honey's summer place on the Savage River. He tells me of a man his mother had seen for many years, a sort of mountain man, who knew "everything" about the woods. He would collect this pretty plant and make wreaths of it for Christmas.

Ostrich Fern - Matteuccia struthiopterus - This is a real beauty, and a Very Big Fern. Ostrich fern fiddleheads (early sprouts) are one of the two species that are palatable when sauteed.  I've seen this fern growing in many places in Garrett County, Maryland, one of the state's three Appalachian counties and the county next to mine.

One day, on my way to teaching English at the community college, I stopped on the roadside and tried to dig up one of these oversized ferns, but I couldn't dig deeply enough to actually uproot it! They like very moist areas, even growing in streams, and I got my feet wet that day to no avail!

Honey's sister has a huge swath of very large ferns in her yard, and she bequeathed us some when she and her husband thinned them out. I don't think they're ostrich ferns, however, because they don't have that huge, meaty root. A few of these to-be-identified large ferns ended up over at the cottage, and I can't wait to see them take off. If they're happy there, I should have a nice swath of them as well, since I planted them in a moist, shady place similar to their home in Honey's sister's yard.

The woods behind my home are filled with ferns, and I've been transplanting a number of them into the yard proper. Every moment I spend in those magical, fairy-filled woods makes me stronger inside and out.

Episode 64: Still Truckin' On, Part Deux -- Some Days, Not So Much

If I sounded as if I'm highly productive in life in Episode 63, this episode is the reality check.

I've been in bed, mostly asleep, for the past several days. That's the joy of chronic disease. On top of the hypersomnolence, lack of motivation is a serious aspect of my condition and, as medical research has demonstrated, a part of most if not all neurodegenerative diseases.

I watched an interview with Linda Ronstadt on YouTube the other day.  She was diagnosed with Parkinson's Disease (PD) a year or so ago and, sadly, can no longer sing at all. She says her attempts sound like shouting, if they can be qualified at all. So sad. What a songbird she was.

Ronstadt also mentions severe lack of motivation as an aspect of PD, which my quick PubMed/MEDLINE search confirmed. Lack of motivation--exclusive of depression--is also found in Alzheimer's, MS, and other neurodegenerative diseases. Since I know I have some sort of neurodegenerative disease but don't yet know exactly which one, this confirms what I've known all along--this damned lack of motivation isn't because I'm lazy or depressed.

I generally don't feel sad, though I have occasions when I do, particularly when my energy is utterly zapped. But I don't stay in that state for long; before long, hope and happiness and productivity return.

Medical science has concluded that this "apathy"--lack of motivation, not necessarily lack of caring--is not due to psychological stress (though surely that adds to it) but is part and parcel of living with neurodegenerative disease.

The technical explanation for apathy in neurodegenerative conditions is explained in Behavioral Neurology of Movement Disorders, Volume 96, edited by Anderson, Weiner, and Long, "Across diagnostic groups, apathy is related to functional disturbance of the anterior cingulum, an area with reciprocal connections with limbic and frontal cortices and basal ganglia structures" (2005).

Our brain's white matter (as opposed to gray matter) is made of connective fibers that "transmit information among neurons within or across different brain regions" (Neuroscience Research Australia). My latest MRI shows far too many white matter lesions in my brain, which correspond to the disconnect there among the regions responsible for motivation.

In other words, the parts of my brain responsible for motivation just ain't talking to each other anymore. The chain is broken. I'm fighting not some personal failing but the dysfunction of my brain. This is a fight to the death.

As my previous episode made clear, I hope, when I am both mentally and physically able to do so, I keep myself productive. Most of that time is spent baking, sewing, or embroidering--quiet activities I've always enjoyed. I'd like to spend more time reading and writing, but unfortunately I spend an inordinate amount of time on the Internet browsing topics I enjoy, a time suck that can be done comfortably in bed while propped up on pillows.

I'd also like to spend more time hanging out with friends, and hiking, and going dancing, and a lot of other activities I used to regularly enjoy.

But in my days of "down time," even the Internet doesn't call me. Lying in bed and staring at the wall is sufficient, if mentally uncomfortable because I really hate doing that, on those days.

And so I fight those times, when I'm able to. When I can't, I submit. And hope I can fight through it another day.

I'm planning to take a class this fall, as I'm very close to a PhD as far as coursework goes. I don't know if I have it in me for the long haul, which will include getting re-certified in a foreign language, a major book reading list and oral exams on the readings, and, of course, the dissertation.

And I can't manage more than one class per semester, hardly a full-time load. But if I'm able to do so, I'd like to keep going. Deadlines imposed on me are helpful, or at least used to be. I've lost my ability to meet some of my deadlines. It's difficult anymore to be a "self-starter." But I do force myself most days.

Then there are days like the last three, when I've been able to do nothing more than lie in bed or on the couch. Yesterday, my diet consisted of one pack of Ramen noodles and, much later, a Stoeffer's Cheddar Potato Bake frozen dinner. Not enough to keep body and soul alive, that's for sure, but I not only didn't feel like fixing anything, I didn't really feel like eating anything.

Oh, I drank a good bit of ginger ale, too--all this sleeping is leaving me dehydrated, as my pee unclearly shows. I've become addicted to ginger ale--at least it beats my old addiction to Pepsi, since there's no caffeine in it. I know the purists will tell me the sugar is what's making me so sluggish, but, hey, I need some pleasure in life.

Speaking of pleasure, I've figured out that if I manage to actually have sex (an increasingly rare occurrence these sad days), I sleep pretty solidly for a couple of days afterwards.  Two weeks ago, after a fiesta, I slept for 31 hours straight; last week, after similar rapturous activity, 24 hours straight. As I've discussed before, my stamina is so bad that sex is now leaving me weak and out of breath almost before we start.

And, obviously, for quite a while in the afterglow.

But we must truck on.

We must not give up on life.

So, most days I force myself. No, not to have sex every day--though Honey and I went at it, often multiple times a day, for the first five years of our relationship. Hey, maybe that's what wore me the hell out!

Anyway, most days I force myself to do something productive. And, perhaps, like with sex, when I finish doing that productive thing, my body goes into recovery mode. Which means sleep. And lethargy. And total lack of motivation. As I describe it to Honey: "I'm in total slug mode."

I don't want to be there. It's not a pleasant place to be. But when there, nothing pulls me from the fugue. Nothing compels me to become vertical rather than horizontal.

Fortunately, to date, this state is temporary. Eventually, perhaps when my body finally feels as rested as it can be, I do turn to something productive. Eventually, I'm even in the mood to have sex.

The best possible thing for a person with chronic disease is a partner who is understanding. Honey knows this is out of my control, and he is as patient as a saint. Of course, I turn him over to his cyber girlfriend(s) when I'm in this state--and, frankly, I'm grateful for their standing in. Or lying in.

But not all of us have the gift that, somehow, the Universe has bestowed upon me in the form of a nurturing, loving, patient partner. Therefore, I recommend a fine article, "Brain Fatigue 101" (including that caused by neurodegenerative disease), by Linda J. Dobberstein. I especially like her recommendations for easing that fatigue, many of which involve communing with nature. I find a day in my woods and gardens does much, perhaps more than anything else, to relieve the exhaustion and "apathy" I feel far too frequently.

What we need today is more time spent in nature, even when very sick. I can't think of anything that eases the mind and soul better than that.

I might brag about my accomplishments, but make no mistake about it: I'm using every bit of energy in my body just to get through my bad days. I've had no greater challenge in life than staying positive and productive in the face of chronic disease.

And I know exactly what I need right now: a day in my woods.

Episode 63: Still Truckin' On -- Pursuing Interests to Forget About Health Problems

I'm tired of discussing health problems on The Mary Dell Show. I never intended it to be all about my declining health, but that issue has dominated my life and thoughts for the past couple of years, so I've defaulted to that topic.

Problems continue, including an ambulance ride to the Emergency Department earlier this month thanks to breathing, heart, and blood pressure problems and even more disturbing signs of losing my language abilities due the neurodegenerative stuff going on--but I'm BORED with all of that!

For now, I'm putting health problems out of mind by concentrating on hobbies and interests I've always had but haven't had much time to pursue. I still don't have a lot of time in any given day since I sleep an average of 15-17 hours in a 24-hour period, but I want to make my waking hours worthwhile whenever I feel up to it.

First is sewing. I learned to sew in eighth grade Home Ec at Rollingcrest Junior High School with Mrs. Poole. Mrs. Poole was a cool teacher who showed us how to do stuff and then would let us go at our machines while she worked on her own projects. First, though, she had shown us how to do our steps so well we could work fairly independently.

She let us talk about anything as long as we were working, and we quiet ones listened to the fascinating commentary of one girl who just loved to talk. I remember her saying how great the song "Benny and the Jets" was--a surprise in those days when our school was somewhat divided on racial lines, and this gal was black--and that Elton John would be on Soul Train. I remember thinking how cool all of that was. Meanwhile, Mrs. Poole worked on a big, fluffy, fringey white jacket. She was that good.

I then began making a lot of my own clothes. It was the Seventies, when peasant dresses and hippie clothes were popular and homemade clothes were valued. When I was nineteen, I made my wedding dress and four bridesmaids' dresses, and I stopped sewing for decades. I'd had quite enough, thank you.

"Paisley Callie"--Given to my Honey's
grandniece, with FUN "Paisley Jungle" 
fabric by Kaffe Fassett.

I loved my wedding dress pattern, from Vogue. And the part I loved most was the lace overlay to the bodice and the unlined lace sleeves with bell cuffs and tiny pearl buttons for closure. I'd asked my sister, a bona fide hippie in those days, to be my maid of honor and told her she could go out and find a dress she liked. She came back with a dress that shocked me a tad. I'd pictured some sort of frothy bridesmaid-y frock, but she'd found a navy-blue gingham halter dress with an embroidered collar.

A BEAUTIFUL dress.  A dress that would be exactly perfect for a wedding if I were having one today. But back then, a mere 19 years old and, at the time, rather a traditionalist, I was getting married in a very conservative church I'd given up all my sense to join. Halter dresses were a definite no-no. However, this was my wedding, and if my sister wanted to wear the dress, so be it.

I hadn't planned on bridesmaids, but my hubby-to-be had four younger sisters, and it seemed a shame NOT to include them as such. So I then had to seek out a pattern similar to my sister's dress, and I made them lighter-blue gingham dresses with eyelet collars. They also wore cute white floppy hats, though my sister wore just a flower in her hair.

Close-up of "Paisley Callie"

In the midst of making those dresses, I thought, "I'm going to look wrong with my long sleeves with everyone else in sleeveless halter dresses." I'd just finished my sleeves, with their pretty bell cuffs with lace-scalloped edges, though I hadn't yet added them to the bodice or sewed in the pearl buttons.

And then I thought, I can't use these sleeves. So I made facings and wore my dress sleeveless instead. It was lovely, but I did miss those sleeves! I still kind of do to this day, though the marriage is long, long over. I should have just put them on the dang dress! Silly, silly me.

Today, it seems, a resurgence in appreciation for homemade and handmade items has occurred. To assuage my blues over never having had a baby girl (though I wouldn't trade my two baby boys-now-men for anything!), I started making toddler dresses. Or baby dresses. Depending on whether or not a one-year-old is toddling, I guess. I chose that size because I love that time when babies are just learning to walk. And these little garments take a lot less time to whip up than a full-sized dress.

"Garden Frock" - with WONDERFUL
fabrics--I just wish I had the
names of the fabrics and designers, but
I don't. That top fabric is to die for,
but that was the last of it for me,
and I can't find it on the Internet.

Close-up of "Garden Frock. I ADORE the top fabric--
if you look close, you'll find bumblebees and dragonflies.

The amazing thing is that the machine I'm using is a little Kenmore my father gave me for Christmas in eighth or ninth grade. It's still running like a top, and I've only had it professionally cleaned once. Sewing makes me feel closer to my father. He enjoyed watching me lay out fabric and cut out pattern pieces, which I had to do on the living room carpeting to have a big enough space. Dad would sit in his chair in the evenings with his beer or martini and watch this process, my least favorite part of sewing. One Christmas, either before the sewing machine or that same year, Dad gave me a good set of sewing scissors. "I've watched you wrestle with those dull scissors all this time," he said, "and it's time you had a proper pair of scissors!"

What a good present. The best presents are those a person chooses based on a need they've seen in your life--and I'll never forget that thoughtfulness on Dad's part. And I learned immediately to value a good pair of scissors. It's all in having the right tools, and my dad, an engineer, understood that.

"Happy Flowers." This was so fun to make.
I also contrasted these fabrics on a purse
I made a few years ago--both are now
available on Esty at my shop,
Woodlands Cottage.

Every time I lay out and cut out my fabric, I think of my dad. It makes the process a lot less tedious. And every time I sew on that little Kenmore, I think of him. Yes, my mom liked my sewing, too--she was over the moon about an apron I made her for Christmas one year--but this is one area in which I know my dad was proud of me.

In my little town is Mountain City Traditional Arts (MCTA), a store that features the arts and crafts of local folk, mostly old-timey products such as quilts and dulcimers and crockery. Our university's Appalachian heritage program runs the store, and the person in charge is a friend who is a Sociology professor at the uni. She "liked" the photos of my dresses on Facebook, and I said I'd like to make some "old-timey" dresses out of ginghams and calicos, etc., as well as some bonnets and head kerchiefs to sell at the store, if she thought they would, and she replied, "I know they'd sell!"

And so I've been whipping up these fun little frocks and headgear for the past few weeks, trying to get some inventory together for my display. The store is on hiatus for a few weeks, so I have a little time.

"Cherry 'n' Checks." I adore cherries on baby
dresses, so when I saw this pink cotton homespun,
I knew it would be perfect for my traditional
arts line, and it is! This dress has plastic
cherry buttons, a crochet flower hem, and
a full slip. Currently on sale on Etsy at my
shop, Woodlands Cottage, but will be put
 in a local store when it re-opens.

So here are a few of my dresses for the traditional arts store. I used old-fashioned fabrics such as gingham and homespun, but I also updated them a bit for babies today. I think they're adorable, if I do say so myself! A few of these dresses were made before I thought of selling them at MCTA, so they are with more modern prints. I had put them on Etsy, but I think I'm going to send them all down to the store. Sewing is a "traditional art," no matter what the fabric!

Along the way, a brilliant idea occurred to me. Our town gets tourists due to a scenic train that stops here. Folks wander into town, and I'd imagine MCTA is one of the stores they "hit" most. But what if young parents forget to bring something to put on their babies' heads on a sunny day? Baby bonnets might just sell--but even better might be little head kerchiefs for tender little heads! So I've been working on both, and will also do kerchiefs for girls and women.

"Gingham Flowers." I am in love with these gingham-look buttons, and they finally arrived after I'd ordered them on E-Bay. I love
how they look on this little dress!

"Gingham Flowers"  I used an "old timey" gingham
updated with fun, fresh flowers.Tiny eyelet trim 
on hem and cute plastic gingham-look buttons.
Available on Etsy under Woodlands Cottage.

My model is a bunny that once belonged to
one of Honey's kids--I need to send the
kerchief to his niece to try on her new baby--
Gotta get the size right before churning these out!

However, posting the dresses to Facebook has left me indentured (in a good way) to two friends--one asked me to make her a garden party dress, which I'm in the midst of doing, and the other asked me to make dresses for her six-year-old nieces. Tomorrow, she and I will go to the fabric store to pick out patterns and fabrics--SO much fun! And the other friend picked the most fun, fabulous peacock fabric--I'll post a photo of that and hopefully a photo of the dress, with her in it, preferably, when it's done!

I've missed working on my toddler dresses, to be honest--but I want to do this other work as well. I've never had to adapt a pattern because my body was always "off the rack"--tall and slim. (Alas, the slim part is not so true anymore.) Sewing patterns were made for me. But this is a skill I've wanted to develop, and I appreciate my friend's giving me the opportunity to do so without a lot of pressure going with it. I'd planned to charge her $20 for my labor (dirt cheap, I might say)--but I've decided to just give her the dress. Buying the patterns and fabric is not cheap these days, and I'd brought a 20 percent off coupon that had expired the day before, so we couldn't use it. I'll just let her be my walking advertisement--IF it turns out!

Kerchiefs are traditional Appalachian headgear,
but I've updated the concept with some fun fabrics.
Each kerchief will have contrasting/coordinating
fabrics and will be reversible.

And traditional bonnets, of course! These are ALMOST done.
I'll probably turn out a few of these with fun fabrics, as well ...

A decade or so ago, I made dresses for my nieces. They both loved to play dress up and become characters in their books, and they were going through the Little House on the Prairie" series, so I made my older niece a prairie dress and bonnet. I then followed up with a colonial dress and bonnet for my younger niece. Aren't they adorable? [photo to come]

Many moons ago, I'd also made a prairie dress for one of my ex-husband's sisters, long before the wedding, actually. She wanted to learn to sew. She was about 11, and we made a pretty prairie dress she wore for a play. She later gave me the dress, so I'll post a photo here soon!

I also made both nieces nightgowns with matching ones for their American Girl dolls. A friend told me I should think about making doll dresses as well as the toddler dresses--though American Girls are really for an older set.

I decided to do a line of "Appalachian Girl" doll dresses to sell at MCTA, and I will put on the sales tag that I'll make a matching girl's dress if contacted. I researched American Girls and was sad to see that Kirstin, the prairie girl doll, had been discontinued. Boo! But that doesn't mean little girls can't imagine their dolls as girls living long ago on the prairie or in these Appalachian Mountains.

I've been doing a lot of crafts lately, but, with my blazing ADHD, I've had trouble finishing products. But I'm turning out baby dresses lickety split!  A few years ago, I did a line of purses that sold in a local arts gallery until it closed. I was proudest when a gallery owner from out of state purchased one of my embroidered purses. I'll post some photos of the purses, too. I came up with a fabric version of Van Gogh's Starry Night I'm particularly in love with. It used to be in a number of Etsy treasuries, but I'm no longer sure I want to sell it, so I don't have it on Etsy anymore. I have a few still hanging around, literally. I need to get those on Etsy one of these days.

So, I AM staying positive and being productive despite the daily trials of chronic illness--being short of breath and being hypersomnolent, among other fun symptoms.

But I've also decided I need to exercise my brain, since it's decline is the scariest part of all my symptoms. I've always had a good mind, and I don't want to lose it entirely. So I reapplied to my alma mater where I'd completed a Master's Degree in English and had completed a number of classes toward my PhD.

And guess what?  I've been readmitted, and I may only have three more classes to take to finish my coursework!  I was amazed I am that close, so it would be dumb not to finish it. I'll never have the stamina to teach full-time again, but even if I'm unable to teach a class or two in person I should be able to teach online. And having the PhD instead of just the Master's will really help in getting those jobs. I'd hate to lose all that I learned in the field until now.

I'm hoping exercising the brain will prolong its integrity and no do the opposite. If I can't handle the course work anymore, I'll give it up--but I do have to try.

So, there IS hope after being diagnosed with chronic disease, even neurodegenerative disease, and there's no reason to wallow (any more than you have to, and, yes, I do wallow when I have to). I try to get something productive done every day, and even if it's a small thing, I count it as a job well done.

Episode 62 : Mary Dell, MD (Medical Detective)--Eating Some Crow But Not Regretful

Dinner?! No, thanks!

Okay, so the DNA results came back, and I don't have myotonic dystrophy.

Hallelujah!

Whatever is  plaguing me is not due to that particular hereditary disorder. This is good news for me and my family--I'd been mostly worried about my kids and nieces and others in the family if I was, in fact, found to have myotonic dystrophy.

So does this make me a bad medical detective? I certainly don't think so. A good detective with a sound theory must follow it to its conclusion, even if that conclusion disproves his or her hypotheses. That's part of the detecting process.

If you've followed any of this "medical detective" hunt of mine, you'll know I've been convinced for some time that I--and, hence, my family--MIGHT have myotonic dystrophy, a hereditary, variably mild to severe disease, similar to multiple sclerosis in many ways (though not all).

I never would have insisted on a DNA test had I not first been told my my local, very competent neurologist, the eminent Dr. A., that I have a demyelinating disease similar to MS and that he would, indeed, diagnose me with MS except for two things:  the white matter lesions running rampant through my brain do not also occur on my spinal cord as in MS, and I'm a bit older than is usual in diagnosing MS. I have heard of older persons getting this diagnosis, however, including my wheelchair-bound aunt, though that doctor had settled on MS while saying my aunt didn't quite fit the profile.

Considering the fact I have had near every sign and symptom of myotonic dystrophy, including myotonia confirmed by EMG (a muscle test), AND my family's resemblance to a typical appearance of the disease (early male baldness, long, thin faces, maloccluded teeth, etc.), as well as my aunt's mystery disease and my son's mysteriously developing a neurological problem as a baby recently connected to myotonic dystrophy through research, it seemed only reasonable that a DNA test determine whether or not this is a concern for me and my family.

And I ended up paying for the test myself. That's how much I wanted to know. And in the months since my blood was taken, I sort of sensed it would be negative--and was darned glad of it. Being right wasn't the point. Being able to sigh in relief and move on is the best possible outcome. But part of figuring out something is ruling out all logical possibilities until the correct answer is found.

I still find it so hard to believe that Son No. 1's craniosynostosis--a skull malformation that has so deeply affected his life--was just a random event, a "spontaneous mutation." I want to know why it happened, and this did seem a very reasonable explanation. But, as I said, "Hallelujah!" Now I don't have to worry about this particular hereditary disease in my family.

You may remember my Mary Dell Show episode about the witch of a neurologist I saw at Johns Hopkins to determine whether I might have myotonic dystrophy. She was certain I did not, and that is fine--however, she treated me with a level of disdain bordering on derision that the memory still rankles. That consult with that woman will ever remain the worst experience I've ever had in health care. And I've had a lot of experiences in health care, some good, some bad.

Okay, so my theory is wrong, but why then DO I have a demyelinating, degenerative neuromuscular condition?

When Dr. A gave me this news, he leaned over and said quietly and seriously, "I'm so very sorry to have to tell you this."

I hadn't been at all surprised. I'd surmised long before that whatever was happening to me was neurological--based on my medical detective skills.

So it's not myotonic dystrophy. Well, then, what the hell is it?

I hate being told by the medical establishment that my debilitating signs and symptoms don't have a specific label. But the fact is, the cost of testing for everything it could be is prohibitive.

So don't worry, sports fans--I'm not going to throw my hat in for any other diagnosis at this point. I've read just about everything I can read about these things. In the end, whatever I have is causing me to go downhill faster than friends my age. That's a fact, and the "why" of it doesn't have to have a label. An MRI proved it.

I'm hugely relieved that whatever is happening to me is not something I have to worry about in others in my family--that was one of the main considerations in getting the DNA test and paying for it myself.

And it was worth every penny to have that peace of mind and to cross off that cause for whatever is making my life so difficult, health-wise, these days. We've discussed a few of the gems thus far--hypersomnolence, REM sleep behavior disorder, difficulty breathing/expending energy, heat intolerance, fecal incontinence, substitute aphasia (a brain-speaking disconnect), not to mention the day-to-day utter fatigue that must be fought every minute if one is to accomplish anything at all.

Guess I'll just wait around and see what surprises my degenerating brain has in store for me.

Can't wait to see what's next.

________________

P.S. I found a great site on diagnosing neuromuscular disease:  http://quest.mda.org/article/getting-correct-diagnosis-neuromuscular-disease. I lament to say that many of the suggestions have not been undertaken in my case to date, while others that should be fundamental to a neurological exam, such as those listed in the "taking history" section, were not done in my case. Thus, my diagnosis remains unknown despite a) being told my a neurologist that I do, indeed, have such a disease and b) regularly experiencing the signs and symptoms of neuromuscular/neurodegenerative disease. The lack of a specific diagnosis is beyond frustrating!

Episode 61 : Finance and Fox a la Benzinga and Our Nation's Future

A headline caught my eye tonight, so I pulled up the article about a 26-year-old MIT grad who "may have cracked the code to income inequality."

Since I believe income inequality is one of the main reasons our nation is in such an economic mess for the middle and working classes, I wanted to see what this presumably intelligent person might have to say.

Okay--I'm not an MIT grad, but either this article or this kid's theory (or both) makes absolutely no sense at all.

Matthew Rognlie's supposedly revolutionary theory is that our economy is totally driven by housing.

"Ferenstein states that Rognlie's theory 'attack[s] the idea that rich capitalists have an unfair ability to turn their current wealth into a lazy dynasty of self-reinforcing investments," states author Zahra Taneez.

I don't see where that idea is attacked at all. Having the wealth to purchase twenty-some homes for one's own family, true of so many of our wealthiest co-citizens, doesn't suggest lazy dynasties of self-reinforcing investments, does it?

The article then goes on to list several claims with which Rognlie supports his theory. Some of these border on the absurd.

I guess I'll tackle them one by one.

1. "Software, robots, and other modern investments all depreciate in price as fast as the iPod. Technology doesn't hold value like it used to, so it's misleading to believe that investments in capital now will give rich folks a long-term advantage."

What, exactly, does this sentence even say?  Okay, take the first part:  Technology depreciates quickly, therefore it doesn't hold value --"

Well, yes, individual pieces of technology depreciate quickly, but that's where the money is made. Things that depreciate must be replaced. This statement is worded to suggest otherwise, but investment in technology remains a sound investment.  Okay, next part:

. . . so it's misleading to believe that investments in capital now will give rich folks a long-term advantage."

Talk about muddy language! The essence, as I parse it, is "rich folks will not have a long-term advantage if they invest in capital now."

Okay, so this follow the original bogus premise that technology is a bad investment, and he's arguing that the rich won't get richer if they invest in capital. Is that capital for technology firms? Or capital for capital? That statement is extremely vague.  But I guess it makes some readers feel better to know that the rich won't have a long-term advantage, even if they don't understand what is (supposedly) being discussed.

2.  "Land/housing is really one of the only investments that give wealthy people a long-term leg up."

Well, I say this statement means absolutely nothing since "is really one of the only" as a phrase actually says is one of the investments that gives the wealthy a leg up--the word "only" does not restrict the meaning enough. "One of the only" investments still leaves room for a whole host of other investments. So what are those? And why aren't we talking about them, too? Doesn't this water down the force, if you want to call it that, of this statement?

Besides, land and housing have always been sound investments, so what's new here? And, yes, wealthy folks have a hell of a lot more land and a lot more houses than any of us working schmucks do, so what's yer point, Matt? Everything comes down to land in the end anyway; that's what wars have always been fought over. And it seems to me that as the richest in this land have bought new mansions before selling their old ones, and most of the working class today can't afford to buy a house at all, this argument is not only empty, it's kind of cruel.

3. "It might be wiser to redirect anger towards those who get in the way of new housing, rather than rely on taxes to solve our problems."

Once again, an empty statement. Throwing "anger" into the mix does up the ante of the rhetoric--but does it serve to justify the next statement, or is it mere fireworks thrown in to appeal to emotions rather than logic?

So we're told to redirect our anger (against the way our economy is going, one must assume) against those who "get in the way of new housing."

And who might those unnamed persons or organizations be? At this point, I smell government bashing on the horizon. So easy to blame the government for everything, but before we get to throwing blame, I haven't yet been convinced that this specious argument about housing is even remotely correct!

New housing has been the barometer for the U.S. market for a very long time--but does that still make sense in today's economy? We already learned from the 2008 subprime crisis that we can't afford to give mortgages to citizens in the "working poor" category, though plenty of money was made on the experiment for the tippity-top income bracket in this nation but only hurt the middle and working classes in the end.

And guess what, sports fans? That did not happen because of the government. That was corporate greed. Which is, in fact, individual greed, and not only because corporations somehow convinced our Supreme Court that they deserve the same protection as persons in this country. Corporations are made up of persons, human beings just like you and me, and those at the top have figured out (mostly by buying our nation's legislature and media) how to protect and grow their own interests no matter the effect on the rest of us. They do so using dubious and downright illegal means--illegal, that is, until they have sufficiently lined the pockets (through newly "legal" avenues for lining those pockets) of legislators to make those means legal.

I smell the stink of this same greed in this so-called economic "theory."

Let's just give everyone another go-round with those subprime mortgages, shall we?

Of course, if the working class, and those in the middle class who are sliding ever closer to said working class, earned a liveable wage, they could afford to meet fair mortgage requirements and would find themselves in the market for a home rather than remaining as tenants the rest of their lives.

Who else is going to buy these new homes, if not the working and middle classes? But who of us can afford to as we watch our salaries, our savings, our retirements, and our economic stability smashed to smithereens by this juggernaut of overarching wealth? And whom, I daresay, is behind this article on this so-called revolutionary economic theory?

4.  "Just 14% of homes are affordable to middle-class families. In the once diverse Mission District, where many young tech workers are now relocating, it's hard to find a new home for less than $1.5 million."

Well, no duh. No one is buying homes because no one can afford them. Throwing in the Mission District prices is unfair, since the average new home does not cost nearly that much. But even the more "affordable" homes can't be afforded by average families in today's economy.

So new jobs is the answer, not new housing. With better jobs, a greater demand for housing would occur as well as a greater ability to meet financing terms for those homes. Not only that, retail sales would increase. The working and middle classes would be able to maintain a decent quality of life, rather than feeling as if they're about to slip under any day now.

But remember where the mighty rich in this nation, and the corporations they run, did with our jobs? They sent them overseas. AND their lackeys in Congress passed laws to give them tax breaks for doing so.

I ask you, without jobs with fair and decent wages, how are we going to buy new houses?

5.  "The government should focus more on housing policy and less on taxing the wealthy, if it wants to properly deal with the inequality problem."

Ah, so here we have it. Not only does the government screw new housing with regulations on doing business in this nation, it is focusing too much on taxing the wealthy.

And because of this, we have an inequality problem.

What utter hogwash.

The wealthy got out of paying fair and reasonable taxes years ago, thanks to Reaganomics and the lie of trickle-down economics. The wealthy no longer pay the same tax rate as the rest of us, as they did before then. They get to keep a much greater percentage of the money they make, which means a much huger piece of the pie than do the efforts of the middle and working classes.

But the wealthiest of our fellow citizens still want us to believe that if we put the full load of our nation's treasury on our own hard-working backs and let them keep the bulk of the spoils they will somehow be sure we benefit, well, all I can say is only the stupid will continue to keep falling for this despite the evil tactics of their propaganda machine.

In short:  What a heap of bull manure.

I noticed at the bottom of the article its ownership by Benzinga.com. This was not a news report in the way we children of the mid-Century were taught. This is a bought advertisement by said Benzinga.com.

So I wasn't at all surprised to learn that this company is owned by Fox News, the most evil entity to show up on the U.S. stage since 1776. This propaganda whore for the wealthiest of our fellow citizens will happily stoop to the deepest levels of that bull manure to drag the rest of us down there with them.

The scary thing is that they've turned this Benzinga thing into a "do it yourself" investment page--another way to twist the average U.S citizen's mind just as they try to join the market where the mega-rich continue to win, as well as in all the other institutions they own. I think I'll take my investment advice elsewhere.

The United States has lost its heart and its soul. We are permitting the heartless and soulless to overtake our Congress, our media, and our thoughts at the expense of what has always been good and uplifting about this nation--the belief that we are all created equal and should, therefore, be treated as equals, not as serfs sniffing for handouts by the tyrannical filthy rich, as we now find ourselves.

Episode 60 : Laporascopic Hysterecomy After-Pain and Poor Patient Education

Those of you who know me know that I (unfortunately) spend most of my time on The Mary Dell Show discussing my various chronic illnesses (neurogenerative disease, liver disease, heart disease, ad nauseum). Today, however, I want to discuss a slightly more acute situation--surgery.

Last Thursday I had a laporascopic hysterectomy during which my uterus was yanked out through my vagina.

"Laporascopic" surgery is a less invasive surgery than the old cut-'em-up hysterectomies. My doctor explained that I'd have two small incisions in my abdomen through which the ovaries would be removed, and the rest of the kit and caboodle would be, as I said, yanked out from below.

"Do you have any questions?" Dr. V asked.

I didn't have any questions. I'm a medical librarian, and in my hubris I thought, "I've got this."

I'd already done the de rigeur quick overview on the procedure on one of my trusted sites for overall medical information written for the patient (listed at the end of this article). I'd heard a lot about laporascopic surgery while working at a non-profit health education agency over the years, and I never heard much or anything about post-surgical pain.

Here, now, is a real-life example of how reading or hearing about something does not necessarily prepare one for an experience like this.

I'd figured with the minimal cutting involved, this hysterectomy wouldn't be nuthin'.

I was wrong.

Don't get me wrong; I've no doubt this new, less invasive surgery is light years better than the old way.

But it ain't nuthin'.

Neither the doctor nor several nurses I saw told me about a couple of possible issues that might follow the surgery. On Day Two, my shoulder started to hurt like a muv, as my brother used to say when we were kids. Later that day, my rib cage was so tender it hurt to breathe. The pain was worse on my right side, and I wasn't sure whether it might also concern my liver, since I do have chronic liver disease.

Okay, then, back to the Web--a quick and dirty Google search: "laporascopic hysterectomy rib pain."

Bam.

Common side effect of abdominal laporascopic surgery, I'd learn. What the doctor didn't mention, and I hadn't picked up on in my reading, is that the body is pumped full of carbon dioxide (CO2) after the patient is put under. This gives the surgeon more room to get to the target organs without nicking anything else in the process, since the CO2 blows up the abdomen something like a balloon and spreads the innards apart.

Apparently, some post-surgical procedures are done to suck as much of the CO2 out of you as possible, but they don't get it all. And it sits there in your abdomen and starts making your body hurt in fairly predictable ways.

I actually did track down patient information from one clinic that mentions the potential for chest, shoulder, and abdominal pain after a laporascopic hysterectomy.

I wonder why, in my case, neither the doctor nor the nurses mentioned this possibility. What if I hadn't felt comfortable doing a quick Google search to find out why it was happening? Couldn't that pain and difficulty breathing been frightening for someone with heart disease? I mean, I have heart disease (cardiomyopathy), but mine is very mild. Still, it's disconcerting when one can't breathe.

Perhaps the health care professionals, in all their wisdom, don't want to put ideas in a patient's head, thinking that if they don't know it's a possibility they won't feel it. Well, that's bogus. I didn't know, and I definitely felt it.

It just amazes me at this point in health care that something so frequent that it's nearly to expected is not mentioned in the patient education done before a routine but serious surgical procedure.

Other than that, I can't really complain about the care I got, though I hesitated to go to the hospital in the small Appalachian city near my home. A friend had recently had a botched surgery to fix a hernia there, and other patient stories abound about the place's quality, or lack thereof.

In the end, though, I opted to stay local. In my next episode, I will discuss the factors leading up to that decision when you're Down the Rabbit Hole in today's health care system.

By the way, it's now Day Six after the surgery. The shoulder pain lasted only one day; the under-ribs pain ended after Day Four; and now I just have a sort of ache or cramp in my lower abdomen. The pain pills take care of that, but I don't feel like dancing a jig, I can tell you that.

I'm still amazed there isn't more patient education on the pain to expect after a laporascopic hysterectomy. This pain is acknowledged in the medical litereature (for doctors), but I haven't found anything about it in the patient education materials online.

Yet the fact that it's real can be attested to by the numerous patient forums in which this problem is discussed. This is just one more example about how the patient comes last in today's health care. Patients are left to find this information out from other patients--not necessarily the most informed source.

With all the talk about patient-centered care, this should NOT be the case, but that's the problem right there: it's all talk; "patient-centered care" means little to nothing in the actual delivery and reception of health care except in the individuals who inherently bring this orientation to their delivery of care. Many times, these individuals are nurses, but some doctors also show this trait. What's clear is that it isn't something the entire system focuses on to any real degree.

But you'd think they'd come up with complete patient care information for something as routine as a laporascopic hysterectomy.

Episode 59: "Connecting All the Parts," or Seeing the Pattern of One's Life When Facing Death

One of my heroes, Oliver Sacks, is dying.

If you haven't read any of Sacks' books, you must. Years ago, I read The Man Who Mistook His Wife for a Hat, which whetted my appetite for more knowledge of the brain and its workings, particularly as they relate to memory, consciousness, and personality.

Oliver Sacks--Photo from NPR.org

Sacks also wrote Awakenings, which was made into a film with Robin Williams playing Sacks as a young doctor treating patients with encephalitic lethargica, a disease that leaves many of its sufferers in a catatonic state. Sacks treated these patients with a drug that brought them "back to life" but tragically was not a permanent cure and the patients lapsed back into catatonia after a fairly brief period of consciousness. In the years since the book came out, Sacks has been criticized by some who say he didn't properly conduct his research on these patients, but as far as I'm concerned the man's compassion for his patients shines through in all the pieces I've read that he's written. I believe his record, as recorded in his writings, and his contributions to neurobiology need no apologies.

Encephalitic lethargica is rare, but a sudden rash of patients landed in hospitals just after World War I and the Spanish Flu epidemic, leading some scientists to believe the condition is caused by a virus. However, post-mortem examination of brains of some of its sufferers have shown no evidence of a virus--so who knows. Fortunately, researchers continue to research cases as they appear, and the more we can learn about the brain the better for those of us who have neurodegenerative disease.

As a sufferer of hypersomnolence--which some encephalitic lethargica patients have rather than sheer catatonia, I'm obviously intrigued with this condition and all others that result in a less-than fully-conscious state. My neurodegenerative disease was only recently diagnosed, and the exact type of disease has yet to be determined. White matter lesions throughout the brain, found in my brain in abundance on a recent MRI, is a sign of a number of different degenerative conditions, so the differential diagnosis (investigating the different diseases I may have and coming up with a definitive diagnosis) has not yet been conducted. In fact, little is going on in that department. It's more of a "wait and see" type thing, itself quite unnerving.

More than the encephalitic lethargica angle, which I do plan to read much more about, right now I'm more interested in Sacks' thoughts in an essay he recently published in The New York Times as he contemplates his imminent (thought hopefully not too imminent) demise ("My Own Life: Oliver Sacks on Learning He Has Terminal Cancer, The New York Times, February 19, 2015). A cancer in his eye, treated nine years ago, has all these years afterwards metastasized to his liver and is now incurable.

"Over the last few days," Sacks, who is 81, writes, "I have been able to see my life as from a great altitude, as a sort of landscape, and with a deepening sense of the connection of all its parts."

Though Sacks quickly goes on to say he is not yet done with life, I want to stop and think about this line for a moment. It's worth repeating. "I have been able to see my life as from a great altitude, as a sort of landscape, and with a deepening sense of the connection of all its parts."

I'm an avid reader and lover of libraries and bookstores. Years ago, I was in Baltimore at the University of Maryland bookstore and happened upon a book written by a social worker that intrigued me after reading the blurbs on the back. I bought the book.

This social worker had spent time with older adults, "seniors," if you will, gathering their life stories, and what had struck her was that most of them told her that, as they faced the end of their lives, they recognized their lives had had an underlying pattern, a purposeful pattern, in which things had happened for a reason, one leading to the next and the next until a sort of tapestry had been woven that represented their lives.

Though I never finished the book (a rare thing for me, but I was into so many things at the time that I somehow lost track of it), I remember sensing great relief that these folks had felt this way and that enough of them had done so that the social worker had recognized the, ahem, pattern.

I found the book not too long after losing both my parents in the space of four years while in my twenties. I'd read lots of books on death and dying by then, but this book gave a fresh perspective, one about life more that death, yet with added urgency.

I so wanted to believe life had meaning, that my parents' lives had had meaning, that my life would have meaning--that all lives have meaning. I still do. Yet, given my inner skeptic, I still remain open on the question.

Do our lives have purpose and patterns that "connect all the parts," or are we merely random examples of life, no more significant than a tsetse fly?

Oliver Sacks' saying the same essential thing that the seniors' narratives in the book had strikingly shared--this sense of meaningful patterns--is again reassuring. I can't help but face my own demise after my diagnosis of neurodegenerative disease. That this reassuring sentiment is now shared by my personal brain guru makes the idea just that more meaningful.

I think a lot about my brain these days, and I think about death a lot these days.

And so here is one of those connections Sacks suggests--a pattern, if you will, at least as it relates to one aspect of my life--my fascination with the brain. My parents' deaths, the social worker's book, and now Oliver Sacks' essay have nicely woven together. Add to that pattern another book that immensely comforted me after my parents died--Viktor Frankl's Man's Search for Meaning, written with hope and heart about his experiences in a German concentration camp--and the fact that I just this moment looked up Frankl and was reminded that he was also a neurologist--and, well, the pattern weaves on.

If I'd known what I now know about myself when I graduated from high school at the age of 16 (after skipping my junior year), I would have gone straight to college and studied neuroscience rather than taking the massive detours in life I did to arrive I'm not quite sure where. As I've said before, I share more with Amy Farrah Fowler than I care to admit--though I just did.

I have more in common with Amy Farrah Fowler
than I care to admit--though I just did!

Of course, the idea of lives as narratives is not brand new. Though I haven't been an active student since first becoming debilitated by illness in 2008, I am about halfway through the course work for my PhD in English (and thinking about trying to finish now--why not?). I've studied the concept of identity and personal narrative through that lens, a lens that does not conflict at all with my interest in neuroscience. These two seemingly disparate fields--English and neuroscience--connect (there's that word again!) in this arena. Our memories form the narrative of our lives, and memory is a key component of the scientific study of the human brain, just as narrative is key to English literature and identity studies.

Yet, as reassuring as all this is, it also lends itself to a scarier scenario, the scariest  part of neurodegenerative disease. Will I lose my narrative, my memories?

My grandmother was sharp as a tack and lived in her own apartment until she turned 86 and started calling my mom at 2 a.m. and asking her why it was so dark at 2 in the afternoon, putting the milk carton in the oven, and other wacky things. I saw her disease rob her of who she was, though she always managed a smile even when the nurses at the nursing home tranquilized the bejesus out of her, as was customary at the time.

And so, even if my demise isn't immediately imminent, I can't help but worry that I will lose my own narrative before actual death occurs, a sort of death of the personality, the person I am, or who I believe myself to be.

Does my life have a meaningful pattern? Do the good and bad things I've done or experienced all add up to a life that makes sense in some grand scheme, if only to myself? I have inklings of that sense of pattern, and that's encouraging.

It's easy for my romantic side to cling to those, but, in the dark nights while I'm wide awake and the rest of the eastern seaboard of the United States is sleeping, my inner skeptic creeps in and the idea that my accidental life on this random planet in an incomprehensible universe means nothing at all, nothing whatsoever.

And then I read something amazing by Oliver Sacks, and the darkness lightens.

No matter what the ultimate answer to this question of meaning ends up being, I have to agree with Sacks when he assesses his life in his new essay: "Above all, I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure." The privilege has been ours, Dr. Sacks. And the biggest privilege for me has been giving birth to the two best sons on the planet.


Epilogue: In a truly strange twist to this episode, I was just putting the caption on my Amy Farrah Fowler photo above when Honey walked in the room. Knowing my nuttiness for turtles, he said I needed to go to the living room and watch The Big Bang Theory: Amy (Farrah Fowler) and Sheldon were about to buy a turtle together. Just as the caption I'd just finished typing says, I have more in common with Amy than I care to admit.

Coincidence? Hmmmmmmmm

A little feller I rescued from the middle of the road
shortly before his release (and me)