The Mary Dell Show

Episode 78: Happy Thanksgiving to Sabine

2017-11-24T19:33:00.000-08:00

Dear, Sabine--

Amy Winehouse's "Will You Still Love Me Tomorrow?" just came on and, of course, I'm immediately in your flat in Peuderhausen as you lie in your hospital bed in the living room. Gaby's there, and one or two of the ladies from Lithuania. The candles are glowing, each of the tiny wooden angel candle holders your mother collected are lit, the windowsills alight with them. The lyrics now say, "Will You Still Be Here Tomorrow," and you are, if not in this dimension, than in some other, if only if it's in my heart and mind as I wish with every cell of my body that I could hold you and talk to you again.I can't do the former, but I can do the latter.

This is so similar to how we corresponded for years, speaking as we did then into our little cassette tape recorders, sharing the details of our days most nights before a bed, a ten-year conversation that started in single cassettes sent to one another across the ocean and then to packages of four or six cassettes at a time. I've never had a closer friend, because something inhibiting disappears when sharing like this, over time and space, in our most intimate moments when alone and reflecting on the most important aspects of our inner and outer worlds.

The things we loved. The parents who raised us, who lived and who each died in the time when knew each other. In fact, I think it was the death of, first, my father, and four years later my mother during those years we worked together in our DC lawfirm, that first drew us so close together. And then, in the latter end of our cassettes, your agony as you watched your beloved father die, and then drew closer to your mother, with whom you'd always had a problematic relationship, had to move from your childhood home into a retirement place where she did thrive for some time but then died with you in the bed beside her.

And your love affair with a little baby you'd come to rock and bottle-feed in the Lithuanian orphanage where you did this with so many others but, especially, this one, who was always and then officially became your daughter, the child whose name means "Life" who, just a few days before you left this dimension, whatever it is, and moved on to the next, whatever that is, first knew that you were leaving us. But you'd arranged for her to stay in the loving family she'd always known, and from the photos I've seen she's grown into a thriving, lovely young woman who looks so much like you it's uncanny.

Episode 77: Clarity After Hep C Cure

2017-08-01T00:03:00.004-07:00

Harvoni kicked Hepatitis C's ass. By the time of mid-treatment, a month and a half after starting Harvoni, there was no sign of HCV in my blood. My post-treatment lab tests gave the same result. My gastroenterologist says he has been amazed at how well his patients have done under this treatment. It's kind of a miracle.

That being said, I keep expecting to see a lawyer's spokesperson on late-night TV asking whether I took this drug and then listing all the "adverse events" (nice euphemism there) that crop up long after the treatment ends. THAT being said, I'm hopeful those effects don't show up for 20 or 30 years, just as HCV hides in one's system that long, seemingly without symptoms.

Of course, I'm an optimist, and I'm hoping taking Harvoni was safe and my cure will be permanent without such "adverse events" appearing some day.

So . . . how has being cured of Hepatitis C changed my day-to-day health?

The most phenomenal result of treatment thus far is how clear the world became once that nasty little virus had been vanquished. I can remember driving on the interstate and looking at the beautiful Appalachian mountains that drew me here and the sky behind them and thinking, "Wow. Everything is crystal clear," almost as if the world had been washed and buffed and polished and was shining again.

"My" mountains and the interstate--though not on
the clearest of days, unlike the clarity inside my
brain, now cured of Hepatitis C!
Photo by my pal Lisa Sheirer

Brain fog is a common symptom experienced by those living with Hep C. (Here's more on the symptom from HepatitisC.net--https://hepatitisc.net/living/hepatitis-c-symptoms-brain-fog/.)

After some thirty years with HCV, the virus had so clouded my brain, both in my visual perception--I was truly in a fog--and in my thinking that I sometimes thought I might have early-onset Alzheimer's. I now know that wasn't and isn't the case. Not only is my visual perception clear again but I am mentally clear as well (with the occasional senior moment nearly everyone my age--58-- experiences).

And I must say that this new clarity is a pretty awesome thing.

I have no doubt that all patients who have been cured of Hep C and its accompanying brain fog experience the same joy when clear sight and thought are restored. I know, as a person whose mental life has always been rich--if muddled and confused for the past few years--this change has given me new hope for my future. Both my livelihood and leisure time involve mental processes such as reading, writing, researching, and daydreaming (or, rather, thinking up new ideas for work projects and for writing stories and essays). The cure has returned to me a long-lost ability to focus that is so important to what I do and how I "see" myself.

I do still have foggy days, but they are few and far between--and that improvement alone is invaluable to me.

As Gary Zukov says, "The characteristics of an authentically empowered personality are humbleness, clarity, forgiveness, and love." It's difficult to have the other three--or much else--when you don't have clarity. Throughout those years when my cognition was hazy and cost me two jobs I loved, I felt neither authentic nor empowered. I felt as if I were a shell of my former self. I'm beginning to feel whole again. Authentic. Empowered. And, damn, that's nice.

I'm trying to keep my posts shorter, so I'll continue this report next time. In the meantime, here's to seeing and thinking clearly!

Episode 76: At it Again: Latest Theory: Primary Lateral Sclerosis

2017-03-01T00:26:00.000-08:00

Well, it certainly is nice to be cured of Hepatitis C. I just hope the "cure" lasts. I will continue to be tested for the next several months ... here's crossing fingers and toes that it holds.

I'm still after the correct diagnosis of my neurodegenerative disease, especially now that the Hep C is behind me. I was told that I have a neurodegenerative disease by my local neurologist, but thus far there's no definitive answer as to whether it's multiple sclerosis or some other condition. Dr. A said he'd diagnose me with MS if I had lesions in my spinal cord, which I don't--but I do have them all through my brain. He also said I was a little "old"--mid-50's at the time--for an MS diagnosis (though late-onset MS IS a thing--and, of course, I've had mysterious hospitalizations and pregnancy troubles that may well have been due to whatever this thing is messing up my brain.)

Lest you think I'm obsessed with this brain thing, let me say that I've had a copy of Dr. A's report on his (abnormal) neurological exam of me and referral to a Johns Hopkins neurologist for over a year, but I've never opened the sealed envelope. I guess I don't really want to know. Pretty scary stuff.

At the same time, not knowing sucks. It would sure be nice to have a diagnosis so all these weird symptoms will no longer be thought to be coming from my imagination.

Some of the symptoms I'd hoped would clear up with the Hep C cure have not cleared up, and that's a bit of a bummer. A lot of a bummer, actually. For instance, the debilitating sleep disorders--idiopathic hypersomnolence, circadian rhythm disorder, sleep apnea, REM sleep disorders, and a history of hypnogogic hallucinations--are still with me. The good thing is that, when I actually AM awake, my brain is much clearer. Brain fog is a common symptom with Hep C, and I definitely suffered from that. I"m amazed when driving around how crystal clear the world looks now, and that alone is a miracle.

I'm pretty sure my sleep disorders are due to some kind of sleep-disordered breathing, but what is causing that?

Another look-see of my signs and symptoms, as well as what Dr. A has told me in my visits to him, has led me to wonder whether the problem may be something called primary lateral sclerosis. This is related to amyotrophic lateral sclerosis (ALS) of bucket-challenge/Lou Gehrig/Stephen Hawkins notoriety but does not tend to move as quickly.

One of the most obvious signs of damage in my neurological exams is hyper-reflexivity. My reflexes have always been normal in the past, but about three years ago Dr. A hit my bony right knee with a hammer and my right leg flew up so high I nearly clipped him in the chin. The reflex was so strong it sort of traveled through my body, and my left leg went halfway up, too. (When I saw Dr. Neurolobitch at Johns Hopkins, her intern who tested me first was struck by the vigor of my reflexes, telling me she wished other medical students could see them--but Dr. N, who was convinced, I can't help but think, that I was faking, downplayed this.) I know I'm not faking, and this is a sign of upper neuron disease.

Upper neuron disease can also affect balance (remember my weird fall while walking and talking at the same time--an early sign of neurodegenerative disease--a few Christmases ago? My big, fat, swollen nose when I hit the pavement beak-first?) I'm clumsy a lot. Even Honey has started making fun of me for how much I bang into things, knock things over, drop things, and generally wreak havoc wherever I go.

The disease can also affect breathing muscles and processes, which leads to weakness in skeletal muscles, and I'm pretty sure I have this in spades. I've been complaining of my exhaustion on the slightest exercise only to be foiled by incorrect or poorly executed tests. "Unless it happens in my office," my pulmonologist tells me, "it isn't happening." I contend I wasn't given the right tests, and at least one that I was given was messed up by the technician. All I know is that my breathing/stamina issues are real. I've been complaining of them since my near-respiratory-breakdown in Europe during the 2013-2014 holidays.

The disease is also known for a "sense of weakness and early fatigue," according to Singer, et al., yet generally without weakness found in neurological tests. That fits me to a T.

Upper neurons, by the way, do this:

Second-order motor neurons are upper motor neurons whose cell bodies reside primarily in the precentral gyrus or the primary motor cortex of the frontal lobe. They send fibers that directly connect to lower motor neurons in the brain stem that innervate the muscles of the face, pharynx, and larynx or to lower motor neurons in the spinal cord that innervate the limb, trunk, and respiratory muscles. (http://emedicine.medscape.com/article/1171782-overview?pa=8dH4jbWcJ9EMQ8XXBYmInAn4vTn47ZAhyNXbVN23XbpfaQjLSWefbWko3s%2FTTYy8Dc%2FQpD2oKbvJtxcVOoY35zRbGMQ7s%2F89oYHt2gMBBbM%3D)

So, I guess it's time to open that envelope and see what Dr. A said about my signs and symptoms. These, I know:

Diffuse, periventricular white matter lesions;
Brisk reflexes;
History of fascilations;
Several diagnosed sleep disorders;
Breathing/stamina issues (as yet unverified by doctor but chronic in "real" life);
Fairly extreme stiffness when standing up or getting up from bed;
Potential laryngeal pharyngeal reflux--some (unverified by doctor) signs and symptoms of this disorder;
Aphasia issues;
Urinary urgency and incontinence (fun).

My age when these signs/symptoms really flared into something undeniable was 54, the mean age for PLS onset (Tartaglia, et al.)

I also have a history of 5th cranial (trigeminal) nerve damage. This, however, is apparently not related to primary lateral sclerosis or upper neuron disease. Lucky me, there's something else wrong with my brain.

One thing for sure, I need to bring up these issues when I next see my pulmonologist. He has cowed me into not telling him any more symptoms because he makes me feel like I have Munchausen's or some crazy malingering disorder. But I've never shown him Dr. A's neurology report. I need to open it and see what it says, and then I need to give a copy to Dr. P.

Stay tuned, sports fans!

And the envelope says ....

Episode 75: Update on Harvoni Treatment for Hep C

2016-12-16T04:03:00.000-08:00

Well, sports fans, it's now been a month and a half since I started Harvoni to treat the Hepatitis C I contracted during a blood transfusion in the 1980s.

So far, side effects have been few, though I did have one mortifying experience with uncontrolled diarrhea in a public place. Nothing is worse than walking through a fast food restaurant trying to get to the bathroom before a major "accident" and not making it in time. But that wasn't the first time that has happened. My theory is the medicine kicked my liver issues into high gear while the virus tried to fight off its attacker, and that was the lovely result.

The diarrhea has calmed down a lot since those first couple of weeks on the stuff, I'm happy to say. I hope that's the LAST time I ever have to deal with that problem in public!

Now I have a new issue--my fingernails have turned brittle and have begun cracking and splitting. Ouch! My fingertips hurt as I type. I'm keeping them cut short, but they still split painfully. Ugh. I also worry that my hair, already thin, is getting thinner. But I suppose far worse things could be going on, and I'll be happy if this virus is killed off.

I've been reading forums online, which is a dangerous thing to do. I learned that long ago when contemplating going on Effexor for my anxiety. If I'd believed everything I read, I never would have gone on a drug that transformed my life from one of debilitating anxiety to relative self-confidence and a clearer perspective. I'm not saying it's a perfect drug, but I'm grateful for it.
And the same will probably be true for Harvoni.

The scariest thing so far about the forums is that a lot of people claim to have side effects long after stopping the drug. Now, supposedly, the Harvoni is out of the system two days after finishing it. So it seems weird that folks would be having side effects when it's no longer in the system. But we do hear about long-term effects of radiation and other treatments that happen long after the treatments have stopped. We see the ads from lawyers about such effects. I really hope nothing like that will pop up for former Harvoni users. I hope I didn't just trade one death sentence for another. On the other hand, we all live under a death sentence. It was worth the risk. I think.

I'll check in again if I notice anything else as I go through treatment. I'm halfway through and keeping my (painful) fingers crossed that I'll be one of the 95-percent-plus patients who are cured of this nasty virus.

Episode 74: Anxiety and Endings

2016-12-14T22:56:00.003-08:00

I started this blog some five years ago with an episode on anxiety.

I don't think I come across, necessarily, as an anxious person, and as I explained in that first episode I never considered myself anxious until "later" in life, maybe even in my forties. This wasn't too bright of me, because I'd had nearly crippling anxiety after starting new jobs more than once by then. I'd been a shy, awkward kind of kid, and though I sort of blossomed in high school I've never felt overly comfortable among people I don't know. I still don't, but I've learned to fake it better.

On the other hand, I'm not much of a worrier on a day-to-day basis. I can relax fairly easily if I do not have any uncomfortable tasks hovering in the near future. This situational anxiety, however, has gotten worse and worse over the years and, at this point, I'm pretty sure it has to do with my neurodegenerative condition, many of which affect patients' ability to get motivated and start new tasks. (These tasks need not be uncomfortable, difficult, or negative, in fact. Just switching from one mode to the next becomes incredibly difficult.)

Tonight, however, I'm facing one of my least favorite tasks, and, hence, I'm writing my blog--er, rather, producing another episode of The Mary Dell Show.

Although my various diagnoses and related severe energy/sleep problems forced me to give up full-time work a few years ago, for the past couple of years, I have been teaching one section of English 101 (freshman comp) at the local state university in town.

This is the perfect part-time job for me. All those years of school have not been utterly wasted. I can still impart my wisdom (such as it is) to a fresh new crop of young adults making the transition from home to their first year living with roommates, doing their own laundry, managing their own time, and facing college-level courses. Young people at this age inspire me. The world has not yet beat their ideals out of their systems, as I often fear it has mine.

Before my illness got the better of me, I was a full-time college English professor, a job I'd aspired to when enrolling as a freshman myself at the age of thirty. I had two little boys at home as I pursued my dream. "Why would you become an English major?" I was asked again and again. I was old enough to know, wasn't I, that no one made any money as graduate in English?

Actually, as I've grown older I've become far more interested in the sciences, particularly ethnobotany, but I still do not think I'd trade my English degrees. I was a book nerd long, long, long before that was ever considered cool. I've written stories and poems and journals since I was a child and even wrote three (unpublished) novels in my twenties and thirties.

I love the written word, especially the beautifully written word. Oh, I know all about postmodernism--I was a graduate student at the height of "high theory" in literary and cultural studies during the mid-1990s. I know privileging certain types of literature over others is conservative and old-fashioned. But I love my "Great Books." And I also welcome other types of literature into the canon.

But I digress. The point is, I mostly love my job as a teacher. Mostly. Frustrations exist, as any teacher will tell you. But the worst part of the job, for me, is what is happening tonight: I despise grading. Not just because it is a chore, but it is a chore. Because of my energy issues, I am not on campus more than about four hours a week. I have to bring my students' papers home with me to grade. So here I sit. Computer on lap. TV on for company. BAD study habits, I know. The TV should be off, but the sound of voices on low volume is comforting. Grading is a lonely job.

I finally decided that one reason this final night of the semester is so difficult for me is that it is an ending.

Now, I am not the "mother substitute" type of teacher at all. I maintain a fairly distant demeanor in class. I'm friendly, and I prefer to keep things on a comfortable basis, but I rarely tell stories about my life outside of the classroom unless it is directly relevant to the topic I'm discussing. I used to tell more stories when I was a full-time teacher. I was younger then; perhaps I've grown more serious over the years. I used to like making students laugh. For someone who'd grown up morbidly shy, the power of owning a room is intoxicating.

But all that was before I got so sick, and before my eldest boy got so sick, and before I lost my full-time teaching job because of being so sick, and before I had to give up working full-time as a successful grant writer because of being so sick. I guess I'm more serious these days.

And so I look at this stack of papers and think about the seriousness of my task. Each one of these papers represents a young person who is hoping for an A. Very few of those papers represents an A paper. I have worked with struggling writers for fifteen weeks. What I can say is that those papers are going to be far, far better than the first papers these students turned in back in September. I can say that many aspects of their writing has improved, in some cases dramatically.

What I can't say is that they demonstrate a fluent understanding of punctuation and grammar--though, in nearly all cases, the student's punctuation and grammar has drastically improved over the semester. Are all the papers free of major errors, such as those having to do with correct sentence structure? No. Well, from what I can see, correct punctuation and grammar is mattering less and less these days. I'm horrified by this, of course, but it's a reality. But this still doesn't mean punctuation and grammar don't matter. I'm not ready yet to throw in that towel.

I try to impress upon these kids, for that is what they are--yes, they are adults, but they are young adults, and I'm nearing sixty, so to me they are kids (and quite often act like kids but, at other times, amaze me with their maturity and strength)--that, in fact, grammar and punctuation do matter. And, off the Internet, in the "real world," I do think that is true. Companies value employees who communicate well in person and in writing. And correct grammar and punctuation are vital for producing clear, well-written materials.

Knowing punctuation and grammar is my superpower.

It's not going to save lives. But writing might. Writing has.

I want my students to have these tools so that they can go forward with powerful personal agency and be advocates for themselves and others.

So tonight is difficult. I want to see these students succeed, but I know I'll face papers that have errors that will take away from strong content. I'll face papers in which students haven't correctly cited a source, one of the key skills they are supposed to learn in my class and one that I've stressed since day one. I hope that, in all cases, those problems will be minimal and will not cause the student to fail this last of four papers. They cannot revise this last one. This is it.

Whatever the reason a student does not learn basic sentence structure--poor teaching/curriculum in schools, lack of interest/motivation/study skills by students, learning disorders, whatever--those problems cannot be entirely "cured" in fifteen weeks. And that is painful for me.

So many of my students this semester worked hard. They revised papers that did not pass the first time, in some cases for each of three previously assigned essays. They care about what they are doing. These are the ones I want to give an A just because of how far they have come. That, alas, is not what my employer expects me to do, and I know that maintaining academic standards is important. It still kills me.

And this is it. Since I only teach this one class, I won't see these students again. I'm a little sad about that. And so I'm anxious. I don't want to judge these kids. I just want to support them. Damn, I hate grading. Better get to it.

Episode 73: The Healing (I Hope) Venture Begins

2016-11-04T04:18:00.001-07:00

I just took my first Harvoni pill, the first of some 90 that I will take over the next three months, one each day.

Will I be cured of my Hepatitis C in 90 days? That remains to be seen--but I have a very good chance of that for the first time since I unknowingly acquire it during a blood transfusion in 1980 or so.

I received the packet on Wednesday, and this is Friday morning. I decided to wait until now because Thursdays are my big day--I teach a class at our near-by college for an hour and 45 minutes, then drive about 1.5 hours to the nearest campus with a PhD in English program, then sit in a three-hour class, and then drive home again.

I didn't want to risk having diarrhea or other untoward side effects on that long day. Next week, I'll know better what I'm in for.

The bad news is that I picked up a bad cold, or possibly even the flu, from Honey, who contracted it from his kids. Honey is now a lot better, but he sounded horrible for a few days, and now I'm descending into that miserable sick world. But I didn't want to wait any longer to start the Harvoni.

ATTENTION, INTERNAL HEPATITIS C VIRUS CELLS!

GET READY TO HAVE YOUR ASSES KICKED!

Oh, I do hope that is what happens. I'll check in again as soon as anything comes up vis-a-vis side effects or any other reactions. Wish me luck, sports fans!

Episode 72: Upon Beginning Hepatitis C Treatment, the Bizarre New Experience of Hope

2016-11-01T23:34:00.002-07:00

"Hope is the thing with feathers."

Yes, I know this quotation is practically a cliche now, but as someone who is about to finish her PhD in English somewhere around the ripe old age of sixty, I could not forego the opportunity to quote a little Emily Dickinson who, if I were concentrating in American Literature, would be my gal. As it is, I'm in British Lit, and I still haven't figured out who to choose for my focus--I have at least five favorites.

As usual, focus eludes me.

So, let me NOW get to the topic of the day: Tomorrow I start an eight-week course of treatment for Hepatitis C, Genotype 1a, on Harvoni. Perhaps, just perhaps, when I finish I will be blessed with the talent of focus, which has never been one of my greatest attributes, but which has now pretty much completely flown the coop of my brain.

"What?' you ask. "Didn't you, Mary Dell, just air an episode bewailing your inability to afford treatment?"

Yes, in fact, I did, and that is what I believed. However, the stars aligned, and tomorrow I will receive, at no cost to me, my first shipment of a month's supply of Harvoni. I received a grant for the copay of nearly $4,000 of the $50,000-ish cost of the treatment, and before anyone yells that it is the people who aren't working who don't have to pay, which isn't right, the fact is that I have worked my whole life and only stopped when I got too sick to do so full-time.

Before you judge, walk a mile in my shoes. If you can manage to walk a mile; I'm not sure I can anymore. Once I tried to walk from my honey's house to mine, a distance of 1 1/2 miles, and I couldn't even get halfway. A woman pulled over to me, where I sat with my head in my arms on the side of the road, and offered me a ride. I don't know what would've happened if she hadn't.

Besides, maybe I'll be cured, and maybe that cure will have a significant effect on my degenerative brain disease, my sleep disorders, and my worst foe, a weakness and lack of energy that has nearly destroyed my quality of life. And if I'm cured and can do it again, I would love to go back to work and bring in some cash.

This being on disability is no joy, let me tell you. I pull in a fraction of what I made as a college professor for some years and as a grantwriter at a non-profit organization for nearly a decade. My darling cottage is not so darling anymore because it's in desperate need of maintenance, but I can't afford that.

Winter is Coming fills me with dread, because keeping my little poorly insulated 1940s house warm during bitterly cold mountain winters will suck even more out of my budget when I already live on the edge of being turned out of my home. I have no luxuries, although my son and I do go out to restaurants now and then. Hey, I was spoiled by my father, who took the family out to eat every Sunday night. My grocery bill these days is small because, with my conditions, I have little to no appetite, so I see any occasional night out as an opportunity to get some nutrition in me.

I do love to cook, but now we're back to the original problem: my fundamental lack of energy, my general exhaustion.

I do so hope that my energy problems will be cured along with the Hep C! I'll try to regularly check in to let you know how the treatment is going.

Hope about my future is fluttering inside me for the first time in a very long time. It feels weird; I've forgotten, honestly, with this bubbly sensation felt like. It's very much like a thing with feathers beating against my rib cage--a bluebird, perhaps, flitting through the trees as a new dawn breaks.
________________

N.B. For a wonderful photo of a bluebird in flight, see a blog by Bud Titlow in the Tallahassee Democrat serendipitously titled "Eastern Bluebird--Is Happiness on the Way?"

Episode 71: Feeling Faint: On Severe Heat Intolerance

2016-08-04T22:14:00.000-07:00

Today was a beautiful day on the mountain--77 degrees. It doesn't get much better than that.

Today was also one of the rare days on which I am awake during daylight hours. I have reversed circadian rhythm and diagnosed idiopathic hypersomnolence--a condition that researchers now attribute to brain dysfunction. Heat intolerance, too, is a symptom of many neurological conditions.

The sun wasn't out, but the air was was soft, with a freshening breeze. With several hours of daylight left, I turned to my favorite hobby--one that is difficult to practice regularly because of the aforesaid reversed sleep pattern. It's difficult to garden in the dark.

So, to the garden I went, a bit distraught that weeds can proliferate so quickly between my visits to its beds. But there's perhaps no better stress reducer for me than getting my hands into the dirt and yanking out weeds. Because we have had a lot of rain this summer, the mugwort, foxtail grass, and sorrel came up easily. I actually like all of those plants--mugwort for its herbal properties, as I'm a wanna-be herbalist, foxtail for its beauty in fresh and dried flower arrangements, and sorrel for its culinary uses.

But this garden runs along the beautiful stone wall in front of my property, and I must have some awareness of curb appeal as it affects my neighbors and their property values. That being said, I've allowed the milkweed to take off after volunteering--but it grows to some six feet high and looks kind of weedy after the flowers have bloomed. I've held it to the back of the border this year and will continue to let it grow here as a monarch butterfly nursery--or hatchery, rather.

Here's the front corner of my wall,
which I love. This everlasting sweet pea
is no longer there, but I do have some farther
down the wall. This corner now
has hostas and ferns.

But to get off my gardening tangent, the point of all this is that I pulled out the weeds--and, truly, there wasn't such a huge number of them--and before long I was feeling faint and sweat was pouring from my scalp, face, and the rest of my body. I wasn't able to spend nearly the time I'd hoped to in the front garden; before I could even remove the detritus from the wall, I had to retreat to the front porch where I rather collapsed on the glider. And, I repeat!, today was 77 degrees, with no sun, absolutely perfect gardening weather. I should have been able to spend hours out there. I don't think I reached an hour--more like 45 minutes--before I had to throw in the towel--er, trowel.

After a couple of hours of relaxing on the porch, the yard called out to me again. Well, actually, the porch railing called out to me. I picked up the clippers and began chopping the new growth of wisteria that winds around the porch railing, saving it to twist and bend it into a wreath. In all I might have clipped eight thin tendrils. I then noticed that the space between the porch and the rhododendron had filled in with new growth, too--and the electric meter lies back there--so I need to keep it clear (though I rarely do, to be honest. Just another of those chores I rarely have the energy for; the list is endless.)

The front of the "cottage"--and the ornamental grass I
had to clear away (though just a little of it). The
rhododendron is right behind it.

At that point, I was pushing myself. I used the clippers to cut away some of the ornamental grass--admittedly not the best tool, but I was feeling weak and faint and sweat was pouring from my pores, so I managed with what I had. I pulled up about ten stalks of jewelweed, and no plant pulls out of the earth more easily than that. I clipped about five or six branches of the rhododendron.

And once again, I felt as if I were going to faint. I was soaking wet from head to toe.

Neither of these ventures into the yard should have winded me in the least. They wouldn't have winded anyone I know who is my age or even older. Especially, need I say again, because of the beautiful weather today.

I haven't felt well since, and now it's 1 in the morning and my head is killing me. I've landed exactly where I spend most of my awake time--flat on the couch.

Honestly, it's summer in general. Not just this day, but the cumulative effect of the hot weather on my body, which just can't take it.

So is this because of my as-yet-undiagnosed neurodegenerative disease? Or is it somehow connected to the Hepatitis C? Who the hell knows. My doctors don't care that much about figuring it out. I was released to yearly checkups by my cardiologist; he doesn't think there's much wrong with my heart despite a history of severe-to-malignant, medication-resistant hypertension with hyperaldosteronism and a series of abnormal cardiac tests (AND being told in 2008, upon admittance to intensive care from the emergency department and being told by the staff cardiologist that I'd probably had one or two heart attacks and was in heart failure--but that's a long story for another day).

I realize this episode is totally self-centered. I haven't reached out to my viewers (all one of you, ha) at all--very bad form. But I'm chronicling my health here because I'd rather bitch and complain to a computer than to my friends and family. They know when I'm not feeling well, but I don't want to bore them with every detail. So you, dear computer, are my confidant, and I thank you.

That being said, here are other resources on heat intolerance for viewers who would like to read further on this condition:

Heat Sensitivity and Hot Temperatures. Brain & Spine Foundation. http://www.brainandspine.org.uk/heat-sensitivity-and-hot-temperatures

"Sucking the Fun Out of Summer." The author has heat intolerance due to Chiari Malformation and POTS (I believe I have the latter, which is associated with autonomic dysfunction): http://www.brainandspine.org.uk/sucking-the-fun-out-summer-my-experience-with-heat-intolerance

Episode 70: On Remaining Engaged and Focused, Or The Lament of Living with Severe Chronic Disease

2016-07-05T23:07:00.001-07:00

Robert Pinsky, writing about Stevie Smith's poem "Thoughts on the Person from Porlock": But maybe we are also ridiculous for smiling at Smith's expressed longing for a Person from Porlock, while we fail to appreciate her genuine, heartfelt misery: misery of feeling the immense human desire for accomplishment, engulfed by our limitations. Under its charm, her poem grieves for the fleeting human capacity, for poetry, for recalling dreams and ideas, for work, for focus itself.

Since giving up my job due to my smorgasbord of chronic illnesses--and receiving Social Security Disability Insurance benefits to keep me going, thank goodness--I have confronted the usual suspects that anyone who is forced to walk this road has or will encounter: lack of sex drive (discussed in earlier episodes) is a major one, of course, but even more worrisome to me (if not to my Honey) is a greater lack of drive, period.

Until I saw a Linda Rondstadt interview in which she discusses the complete lack of motivation brought on by her Parkinson's Disease--she says she doesn't do much of anything anymore other than lie around and read books--I didn't realize this ponderous lack of motivation for just about everything was due to my neurodegenerative illness. I figured it had to do with fighting against depression--but until very recently I haven't felt at all depressed. The desire to do things, to make things, to make things happen, was still very much alive, but a correlating motivation was simply missing.

I actually saw this medically described in an article about being unable to get up from sleep in order to go to work or do anything else, which I suffered from in the last five years or so of my working life. I'll try to find that article again, but the essence was that it takes three components to motivate a person to get up from bed, or, I'll extrapolate, to move from one activity to another, which I also have terrible problems accomplishing.

The three components are desire, motivation, and (if I remember correctly) ability. All those days I lay in bed, sleeping through alarms and even prescribed stimulants, I had immense desire to go to work. I loved my work. I loved my coworkers. I loved my job. Oh, it had its stresses and its aggravations, as any job has, but the rewards of doing good work for a good organization with a good mission, and seeing results, and all those other wonderful aspects of having a good job meant the world to me. The last thing I wanted to do was show up late again--it was downright embarrassing. I wanted to get up and go to work, dammit!

So, desire was not the problem. I had plenty of desire. Ostensibly, I also had the ability. I could freely move my body (or so I thought). However, studies show that the degenerating brain may not work properly to make these things happen, so I would have to say my ability was impaired. That, I suppose, is what all those doctors' reports and my own statement showed the feds when they reviewed my application for benefits--but for a person who was always a "self-starter" and somewhat of an over-achiever, this is a bitter pill to swallow. That ability malfunction also, of course, affected the motivation function, the actual spirit that animates the body when it decides to move its legs from the mattress to the floor and stand up.

So weird. The whole thing is so weird. As an over-achiever, I never dreamed I'd come to a place in which I'd be unable to do whatever I set my mind to doing. But here I am. It's as if I've literally burned myself out, though it's my brain that's burning out, filling itself with little white matter lesions that are playing havoc with my life. And it's a real despair to realize that, even for those things I'm most passionate about, I may no longer have the capacity to carry out what needs to be done.

The latest "big" thing I want to do is to preserve a swath of woods in my town in which a colony of pink lady's slippers--North American native orchids--as well as many other native woodland wonders grow. I've already received the verbal support of the director of our local university's ethnobotany program, and I just got a letter from the small city where I live offering its support, along with its concerns. Those concerns were ones I had already assumed--I would need to get a group of citizens together who care about preserving our natural flora in order to raise money that we might need as a match for any grants we might get.

Pink lady's slipper (Cipripedium acuale)
Photo from UW-Madison, Department of Botany

As a successful grant writer, I know I can write the grant proposal. Or at least, I used to be able to write the grant proposal. And I spent years doing coalition-building and bringing projects to fruition in my job, so that part should be cake as well.

But I'm afraid. I'm afraid that all this desire will go nowhere. Somewhere along the line I'll let the ball go. I'll get started and then I'll disappoint people. I won't follow through.

In short, I've become a flake.

I can't commit to anything.

If I say I'm joining friends later, nine times out of ten I don't make it--I'll be asleep, or I'll be unable to motivate myself off the couch.

If I can't be counted on to carry through on that--the most pleasurable thing I know of other than spending time with my Honey and/or my kids--how can I be counted on to carry out anything else?

And so, I have to say, reading the lines by Robert Pinsky in the epigraph did make me feel better. This is a human flaw, not just a flaw of those of us with chronic disease. However, the flaw truly does become pathological, nearly insurmountable, with this brain I have. I fight it--I do. I start things with full intentions. But I disappoint myself again and again and again. It's kind of horrible.

I know I have to bull through this somehow, but I also have to be realistic. Perhaps I could find a champion for my lady's slipper cause who has the energy and ability to see the project successfully through, even if it is "my" baby.

But I do know that only I can muster the desire, motivation, and ability to write my books--my fairy book for young girls, my memoir, poems, fiction--and that's the greatest fear of all: that I will leave this world without having put those memories, those ideas, those dreams onto paper and maybe, just perhaps, being remembered for that.

And it's hard not to get depressed in the face of this fear, and this reality, which is the struggle I'm now going through. It helps to write about it, I guess. I found the Pinsky quotation quite by accident--by watching an old episode of Inspector Morse, in fact, in which he calls his sergeant "The person from Porlock." That led to an Internet search, and my reacquaintance with Coleridge's "Kubla Khan," and with Robert Pinsky's thoughts on the Smith poem.

Those are the happy episodes that keep me going. Like maybe there is a purpose to my life after all. And, no, I don't want to read A Purposeful Life or any of that. My metaphysical beliefs have atrophied along with my brain, I guess. I just want to be able to do, and to make, and to make things that matter. That's all.

Indeed, I lament "the fleeting human capacity, for poetry, for recalling dreams and ideas, for work, for focus itself."

For now, I have the rest of an Inspector Morse episode to watch--and this one, "Twilight of the Gods," has John Guilgud in it! There still are pleasures left in life!

Episode 69: Can't Afford Life-Changing Hepatitis C Treatment

2016-04-28T20:27:00.003-07:00

Every day on TV, ads for Hepatitis C treatments promise me a new life.

I contracted Hepatitis C in 1980 when given a transfusion during a D and C--a procedure to scrape out my uterus. I'd been bleeding heavily since giving birth to my first son, and when Dr. Townsend saw me in the recovery room after the D and C he said there'd been placental material inside, most likely from Jason's birth but also possibly from a miscarriage. In any event, I bled a lot and was given two pints of blood from the Red Cross blood bank in Washington, DC. In those days, blood wasn't tested for AIDS or Hepatitis C because neither disease had been identified or named until AIDS in 1983 and Hep C in 1989.

Luck of the draw, I guess.

I need to get this publication!
https://www.opensocietyfoundations.org/publications/hepatitis-c-treatment-price-profits-and-barriers-access

Recent studies have found that most Hep C transmission is due to medical procedures, not risky behaviors. For more information on this, see this article in Internal Medicine News.

Throughout the years I've had this blog I've been searching for answers to the weird symptoms I've had, many of them neurological. Only recently have doctors found HCV, the Hepatitis C virus, replicating in the brain. That probably means my white matter/demyelinating disease, and probably my diagnosed hypersomnia--which though called idiopathic is now known to originate in the brain--are due to the decades large quantities of HCV that have been circulating in my blood. Despite this, I have never been treated.

I have HCV genotype 1a, the most difficult to eradicate. In the past, the only treatment was some 49 weeks on Interferon and Ribavirin, and the treatment frequently led to flu-like symptoms, depression, and a bunch of other problems I didn't want to invite into my life. While I was working full-time, I couldn't even think about doing that. I was already so run down with my hypersomnolence, lack of energy, and host of other diagnoses that I was pretty sure the treatment would kill me, and I was still alive (barely) without it, and being alive is better than being dead. I think. Even after going through that treatment, the odds of clearing the virus were only 50 percent.

Now, of course, brand-new treatments are available, and one is highly effective against genotype 1a and is administered over only a couple of months rather than nearly a full year. And I'm on disability now, so even if it does knock me on my ass I can absorb that for a brief period of time. I went to my gastroenterologist, though, and he informed me of the following:

Insurance companies will not approve treatment unless I have evidence of liver disease. My liver has held up pretty well through all of this, though I'm going for a biopsy in the morning. It has been something like 10 years since my last biopsy.
Treatment for Genotype 1a costs $45,000.
If I am liable for 20 percent, that means I'll owe close to $10,000.
I am on Disability and have a three-hour-a-week part-time job, so my income is just barely over the poverty line--but is OVER, so I am not eligible for any state or federal assistance with the cost of drugs that are making some CEOs out there very, very, very rich.

Let me be straight: I don't begrudge the poor people their subsidies. I am damned close to poor, and it is damned hard. I know what it's like to be comfortable; I grew up in a middle-class home; my father was an electronic engineer and my mother a homemaker. I know the difference.

Blaming the poor and begrudging them the help they get from the rest of us just distracts us from the main problem: the fact that the wealthy do not pay their fair share of taxes (thanks to Reaganomics) and the other fact that far more of our tax money goes to the war machine and sketchy crony contracts than to help the poor, old, and sick among us.

Meanwhile, if I lived in Australia, the treatment would be paid for by my government, no matter how I contracted the disease.

So here's my dilemma now.

I really do want to have this disease treated. I really do want to feel better. I would love to be able to go back to work full-time and make some decent money so I could fix up my rapidly crumbling home and pay off my current bills and be able to enjoy my last days without constant financial worry on my mind.

But $10,000? How the hell am I going to do that? I don't even have good credit, thanks to my then-employer's terminating me when I became too sick to teach full-time anymore. I had to declare bankruptcy and am slowly working my way back to half-decent credit--but who the heck is going to give me a loan?

This is why universal health care needs so badly to be instituted in this country. There is no reason for drugs to cost that much when pharmaceutical CEOs are bringing home gazillions of dollars every year in salaries and bonuses. There is no reason for insurance companies to limit their coverage when insurance CEOs are bringing home gazillions of dollars every year in salaries and bonuses.

We are a stupid people, we Americans, to let this go on. We keep electing puppets into Congress who don't have our interests at heart--not the tiniest bit. And we are paying for our stupidity with our very lives. When are we going to wake up? I did my part--I voted for Bernie. I just hope he is the beginning of a wave of awareness in this nation. We the People need to take back health care from the vampires sucking our blood--even mine, chock full as it is of a deadly virus.

Episode 68: Hepatitis C and Parkinson's Disease Linked--Could This Be the Answer?

2016-01-10T04:19:00.003-08:00

I hate writing about my health all the time, but I guess I want a record of what I've gone through in case it helps anyone else. Maybe it will help my kids someday to understand why I have had so little energy and have fallen so far in my life, from a promising career as a college English professor some seven years ago to my current status as poverty-stricken, disabled fifty-something slug.

I've tended to downplay my hepatitis C since being diagnosed early in the 2000s after giving blood for the very first time. I don't like needles, so I'd avoided giving blood my whole life, but while teaching college-level classes in the local high school I was talked into donating by my over-achieving kids. I wanted to help them reach their goals as Red Cross volunteers. And I subsequently received a letter from the Red Cross telling me my blood had been tested two or three times, and it was positive for Hepatitis C.

Sometime between 1979 and 1983, the years my boys were born, I was given two D and Cs (procedures to scrape out the uterus) at Columbia Hospital for Women in Washington, DC. I kept bleeding heavily after the birth of my first baby, so my OB/GYN suggested the procedure. The first one didn't work, so they did it again. I was given two pints of blood in a transfusion during one of the procedures. This was the pre-AIDS era, and Hep C didn't even have a name yet (and wouldn't until 1989). Blood was not screened then, and IV drug users were the most common blood donors since they could do it for money.

I had no clue that I had this disease until some two and a half decades later. And now, it has been--yikes!--close to forty years since the virus began circulating in my veins. Thus far, my liver has proven strong. My last liver biopsy--admittedly some six or seven years ago--showed no fibrosis, the first step toward cirrhosis and potentially liver cancer that can happen due to infection with Hep C, or, rather, HCV, as the virus is known.

My genotype (1A) is the most difficult to cure. In the past, treatment required 49 or so weeks (nearly a year) of interferon injections as well as daily oral doses of ribaviron. Interferon has nasty, sometimes debilitating side effects. Not only that--the grueling treatment is only effective in about 50 percent of those with my genotype. Pretty lousy odds when having to potentially give up a year of one's life. As I have been my sole means of support since my husband and I split in 1985, I never felt I could afford the time off to be treated.

I also hoped that treatments would improve and, lucky me, that has happened. There are now several options to treat my genotype with oral medications over six to eight weeks, and the cure rate is 98-99 percent.

Just in time. And, truly, I am lucky. I now have a chance to feel better. I realize my trying to find the cause of my problems may all have been simplified if I'd just attributed them to hepatitis C. The thing is, the HCV virus's neurotoxicity has only recently been recognized.

The eminent Dr. A., my local neurologist, told me c. 2013 that I have some sort of neurodegenerative disease, but he couldn't say for sure which one it might be. "If you had white matter disease in your cervical spine," he told me, "I would say you have MS." I don't, though. I just have white matter lesions all through my brain. What are they? Could they be the Lewy bodies of Parkinson's?

Not too long ago, I wrote about the possibility that my problems could be due to Parkinson's Disease. What had struck me most about an interview with Linda Ronstadt, the songbird of my youth, was her saying that she totally lacked motivation to do much of anything other than chill out and read books. Those weren't her exact words, but the symptom struck me as so very similar to the ones I've endured for the past five years or so. (See Episode 64.)

It's as if a switch just won't turn on when I need to shift gears (sorry if that's a mixed metaphor, though they are both mechanical :) ). I get stuck on one mode, whether that be lying on the couch watching TV when I need to sleep, or sleeping itself. Although I dearly love my friends and the times I've spent out on the town with them, I rarely feel motivated to go out with them these days. Even when I plan an evening out, I have a hard time actually leaving the house.

It just seems monumentally difficult to get up, take a shower, get dressed, and go out. I can't tell you how many times during the holidays I let my friends down when I couldn't get together or go to a party with them. And these are the best friends on the planet. I have to be sick if I can't muster up the energy to hang out with them.

I rarely shower or even change clothes nowadays. I know this sounds disgusting. And, no, I'm not depressed. It's just so damned exhausting. And I'm lucky; I don't get "BO." I've confirmed this with Honey. And so the idea of washing my hair, holding my arms up long enough to do that, just wears me out. I've come out of the shower faint and out of breath, with barely the strength to dry off with a towel. The idea of having to do all that gets harder and harder as time goes by, so most of the time I just don't bother.

Rapid Eye Movement (REM) Sleep Disorder is another early Parkinson's symptom that I've experienced over the past year. I recounted those experiences in my previous PD post. Fortunately, the episodes stopped happening after that until one very recently when I actually awoke punching myself in the face! The dream made sense at the time, but I can't remember now what it was.

A few other problems I have that could be attributed to early Parkinson's: increasing episodes of anomic aphasia and paraphasia, difficulty hand writing anything, stiffness and slow movements, frequently feeling faint upon standing, a fall and concussion two years ago while walking and talking at the same time--strangely enough, this is a complicated task for the human body, and doing so with Parkinson's or other brain disorders may lead one to fall, as I did (see "Talking While Walking: Cognitive Loading and Injurious Falls in Parkinson's Disease," among others). A few of my other symptoms include heat intolerance, increasingly stooped posture (so unattractive!), recent onset of chronic constipation, urinary urgency and incontinence, and more.

Every one of these cognitive changes listed on the Northwest Parkinson's Association site applies to me BIGTIME:

Slowed thinking speed;
Word finding difficulty;
Trouble with multitasking;
Difficulty organizing complex tasks, steps, or instructions;
Memory problems.

Added to that list is frequent errors in writing that I frequently do not catch--this is a big change for me, an uber-accurate typist and compulsive proofreader in my former life ... though I hope I'm still the "word sorceress" Honey called me recently (I love it!).

More often than not these days, I'll begin talking and my words will jumble up--as if my mouth has not yet caught up to my brain, or vice versa. A previous episode of The Mary Dell is devoted to the frequently humorous and always fascinating word scrambles I've come out with lately.

All of these signs and symptoms point to a degenerating brain--quite the scary thing for a gal always rather smug about the quality of hers.

On the other hand, the diagnostic criteria for Parkinson's includes four cardinal signs, and I can't say that these clearly apply to my muscle and balance symptoms, so perhaps this STILL doesn't explain my neurodegeneration--and none of the possibilities are exactly keen.

Last month, I finally met with my gastroenterologist, who will look into treating my Hep C after he does a few other tests relating to my digestive problems--specifically, a colonoscopy in early February. He informs me, however, that insurance companies will not pay for treatment unless one is showing signs of liver degeneration.

In fact, I've been having some of those signs recently. My liver enzymes were elevated for the first time recently. My digestive problems have increased. And bile was found in my urine when it was tested recently for a urinary tract infection--and that's a sign of liver problems.

Now also, lucky me, I say ironically, because it really is true--I can show even more potential deterioration from the HCV virus, thanks to Medicine's recently linking Hep C to Parkinson's. Yes. Lucky, lucky me. And I will feel lucky indeed if, in fact, the treatment turns my life around again, at least enough that I can enjoy some reasonably healthy years left with my Honey and my kids, not to mention the chance to reach my hopes and dreams. I've thought for some time I've got something degenerative that will take me away sooner than should be--but maybe, just maybe, treatment will stop that process in its tracks and give me some good years left on this planet.

Here are two separate studies that show "significant" evidence linking Hep C and Parkinson's:

Hepatitis C Virus: A Risk Factor for Parkinson's. "In conclusion, our study demonstrated a significantly positive epidemiological association between HCV infection and PD and corroborated the dopaminergic toxicity of HCV similar to that of MPP(+)."

Hepatitis C Virus as a Risk Factor for Parkinson Disease: A Nationwide Cohort Study. "We conducted a large nationwide population-based study and found that patients with HCV exhibit a significantly increased risk of developing PD."

Will curing the hepatitis C arrest the Parkinson's Disease? Whether or not I end up having PD, I guess only time will tell for those who do--I see that a clinical trial on this very question is being conducted. No matter what, getting rid of a damaging virus circulating in the blood has to be a good thing.

___________

N.B. It is now 2021, and I've been cured of Hep C for some five years. I can say that most of the symptoms of Parkinson's that I list here have cleared up. I don't think Parkinson's goes away once it starts, so clearly I didn't and don't have it, thank goodness. Just goes to show how debilitating Hep C can be. Nevertheless, the articles listed here do show that this link exists, so maybe this blog entry will help someone.

Episode 67: On Adult Children with Mental Illness

2015-08-07T01:18:00.000-07:00

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/

I've told J.'s early story in other episodes. In a nutshell, he was born two months prematurely for no clear cause other than the leaking of amniotic fluid (my water's "breaking") when I was 31 weeks' pregnant. This occurred while my then-husband and I calmly watched television--totally unexpected, and nothing much has been calm from that day forward. (Very) long story short--there's so much more to this story--J. was born five days later, two months to the day before his due date.

J. was not the tiniest of premies, but he was small, a mere 3 pounds, 13 ounces. And this was the late 1970s. Neonatal intensive care had not progressed to where it continues to struggle today. "Your baby has a 50/50 chance of surviving the first 24 hours," my OB/GYN told me after talking to the NICU doctors.

J. stayed in the hospital 26 days, most of them spent in an Isolette, or incubator, like a little chick. Someone suggested I tape record my voice and place the recorder in the Isolette to both comfort J., who'd been hearing my voice from inside for seven months, and help him to bond when I could actually hold him and talk to him close up.

I read Robert Louis Stevenson's A Child's Garden of Verses. The nurses would flip the cassette and play it for J. when I couldn't be there, though I came every day with bottles of my own breast milk--the best possible start for my baby, according to my OB/GYN--that for weeks went down a tube through his mouth to his stomach before he graduated to red-nippled bottles--the red nipples indicated numerous large, easy-to-suck holes. The milking machine paid for by our insurance was as big as a small appliance--it looked like it could milk a cow.

At a robust 4 pounds, 12 ounces, J. was released from the NICU right into my twenty-year old and my husband's twenty-one year old arms. We couldn't have been more excited. I'd to say we couldn't be more unprepared, but that's not entirely true. We were young but about as prepared as any parents who bring home a tiny infant for the first time. And as the first grandchild for all our parents, we would have no lack of advice or help with anything we could possibly need.

We knew J. had had a rough start, but we doubted not one bit that he would become an amazing person, someone we'd be very proud of. And that has come to be the case, if I can speak for my ex, J.'s father. I know it's true for me.

But that pride accepts that life has not been real easy on J. And, at times, the pride turns to sorrow that J.'s continuing challenges keep him from the full, exuberant life I always dreamed for him.

Despite his clean bill of health upon leaving the hospital, J. would be diagnosed by age six months with left hemiparesis (weakness/paralysis on left side) and craniosynostosis (a skull malformation that had led to his head's being somewhat large and unusually shaped). He would have two neurosurgeries in his first year of life that would improve his head shape significantly but not enough to prevent other kindergarteners from calling him "football head" a few years later.

Types of craniosynostosis, from Cranio Kids South Africa,
http://www.craniokids.co.za/cranio_faq.htm

To show J.'s spunky attitude--a trait that has waxed and waned over the years but which I believe is fundamental to his nature: J. responded to my apparently stricken face after he came home from kindergarten with the "football head" news with the following: "Oh, don't worry about it. I think all of your heads look like pumpkins."

In a massive condensing of the story (which includes yet another neurosurgery and a grand mal seizure that nearly killed him), skip ahead to J.'s twenties, a decade that is so difficult for many young persons trying to make the transition from childhood to adulthood. (I'm still not sure I've made it yet.)

Not surprisingly, J. struggled. He struggled mightily. His anxiety and depression eventually led to a psychotic break and the diagnosis of Bipolar I, the more serious type of bipolar, once known as "manic depressive disease." Getting J. to return to a more steady mood and intact personality took years.

And J.'s years of seeking a "normal" life (whatever that is) have left that goal unmet in at least one key area--the ability to keep a job on a long-term basis and fully support himself. He is on federal disability but gets a paltry $700 or so a month and $40 in food stamps.

I defy any person living in he United States today to live on $740 a month and not scrape miserably by, most likely under a bridge. I've had to use my sadly meager financial resources (after losing my own jobs to major health problems and recently beginning my subsistence on my own disability benefits) to help keep J. afloat.

I'd be happy to support him to the moon and back--but I do so want him to be happy. A job he enjoyed and the self-satisfaction that comes with such a job would do wonders for him. And, yes, the financial stress and worry about Jason's psychosocial needs weigh heavily on me, so his being happy and employed in a job he enjoys would do wonders for me as well.

That goal apparently remains elusive. I say "apparently" because I still hope against hope he will be able to return to the call center where he began working a couple of months ago once treated by his doctor. Of course, J. may indeed decide to leave the job, and certainly ongoing stress is not something to court, considering potential for the disastrous consequences.

J. has an emergency visit scheduled for tomorrow, and I'm going with him to give the doc some of my impressions (with J.'s permission) and make the suggestion that he may need a medication tweak, since his anxiety about the job has been way out of proportion with the difficulty of the job.

Over his years of adulthood, J.'s mood has normally stayed mostly in the mildly to moderately depressed range, but he'd had a couple of serious depression episodes by the time he was in his mid-20's, and not long after that he had a complete break with reality. This tragic, terrifying episode formed the basis of an essay published in The Sun: A Magazine of Ideas, so I won't get into details here. It's difficult to even look back at those days.

While his social struggles might have brought on J.'s neuro/psychiatric symptoms, J. may also have underlying organic brain disease that contributed to or brought on these dramatic episodes. He also has a hefty genetic load--bipolar and other issues on his dad's side, and depression, anxiety, ADD, and Asperger's Syndrome on his mom's (my) side.

But despite my worry over the job and the rest of J.'s life, I can't help but be thrilled by how far he has come over the past decade, given all he went through (not to mention how difficult life has been for him since the very beginning). J.'s strength amazes me. Thanks to a phenomenal, if quirky psychiatrist (I think he's either an alien from a benevolent planet or a wizard), family support, and the perfect medicine cocktail, J. has really made a comeback. He was able to work three difficult years as a grocery checkout person, but eventually the all-too-frequent negativity from some of his coworkers and the public just wore him down. He was living in a small city about 2 hours away from me, shared an apartment with his brother for a while, and loved the area. He had to give all of that up when he couldn't do the job anymore, and then he returned to his exile, as he sees it, unfortunately, in Appalachia.

He'd hoped to finish his last year of college while here, but finances have made that impossible thus far. (J. owes the local college his tuition for one semester when he just couldn't finish. I think he was on academic probation at the time, or something like that. Despite appealing the decision and having support from his doctor, the university decided he has to be liable for that $1,200 or so, which might as well be $12,000 for J.)

When J. lost his identity, I wasn't sure I'd ever talk to my "real" son again. While he did retrieve that identity and is, indeed, my very real son again--he continues to struggle. Despite all his gifts that are so obvious and so valuable to me and others, J. continues to stay fairly sequestered at home. His social anxiety prevents his going out to places where he could meet other young folks, though he does like to go out and dance when he can--but that means traveling to the more urban areas for good gay bars, and since he's living a subsistence life he can't afford to do that very often.

J. is very much a metrosexual, and my woodlands cottage in the Appalachian Mountains is not his cup of tea. But I own my house, and it gives him a place to live where he isn't charged his entire monthly check for rent. If he could financially manage living in a more urban area, I'd heartily support him. Unfortunately, the numbers just don't add up for that right now.

And, as his mom watching all this and experiencing it with him, I struggle, too.

I've written about my smorgasbord of chronic disease in many episodes of The Mary Dell Show. For the most part, though, I've tried to leave my kids and other family members out of my chronicles to respect their right to privacy.

But it dawned on me today what a huge toll stress has taken on my life--and much of that stress has been due to being at times a caregiver and at other times merely a major part of J.'s support system since he came into this world three-plus decades ago. I don't want to call this a burden--it's simply part of being a loving parent, and I wouldn't change a thing I've done unless I could in some way know it would be more helpful for him than I've tried to be.

[My mother's pounding honesty into my head from a young age makes me back off slightly from that last statement--I've certainly made mistakes as a parent that I regret to this day, but for the most part I think I did a pretty good job.]

So why this epiphany after so many years of these ongoing struggles?

I think it's because, since Jason's anxiety led to his not being able to handle a job that should have been almost a cakewalk for him given his talents and abilities, a thick, heavy blanket has been laid over my head and shoulders. "Feeling the weight" of stress is NOT a metaphor; I literally feel the stress lying on top of me like that elephant in the asthma commercials.

Jason can't handle stress, either--and here we are, living this life defined by stress.

Time has proven that, like his mom, J. has a severe problem with job anxiety. As tough as this crushing anxiety was on me through the years whenever I changed jobs, I bulled through it and eventually found confidence and competence as I continued working in each position. (I also started taking Effexor, a drug I sometimes worry has a role in my neurodegenerative disease, but one that truly kicked major anxiety in the ass without making me feel spacey whatsoever). I know this would be true for J., too, if he could bull through as well.

And there's the rub. I just don't know that J. is going to be able to bull through this "perfect" job despite its obvious benefits: it's a part-time position, a necessity at this point, 5 hours a day, no weekends; he can sit rather than stand--he has developed painful foot problems due to his neuromuscular problems/hemiparesis after two years standing as a part-timer in a grocery store and can probably no longer handle a standing-only position; he does not have to physically face a public that has, at times even since he reached adulthood, been less than kind about his appearance and capabilities.

Only a few weeks ago, J. was in McDonalds eating (something J., a total food snob, still deigns to do now and then) when an old man--J. said he looked to be about 92--asked him about his head scars. (In addition to all the other ways Nature or God or Genetics or Fate decided to mess with my kid, J. went bald in his early 20's and, thus, both his head shape and multiple surgical scars are on prominent display wherever he goes.)

J. explained about craniosynostosis and what had had to be do to correct the problem as much as possible.

The old coot snickered and said, "Well, did you sue the doctor for screwing up the job?"

Honestly, J.'s distress when he came to see me at Honey's house just after that episode is utterly painful to contemplate.

Working speedily can be difficult for J. due to the paralysis on his left side, and some members of the public--the old man is only one of J.'s examples, and I can even think of worse--can be amazingly impatient and rude--but on the telephone he can always place callers on hold or otherwise stall while he gets his wits together; he could never do that in a face-to-face customer service position.

Not only those advantages accrue to the job, but the management has been fabulously compassionate and patient with J. and has stressed that he can work his way into the job with their full support. There just ain't too many employers willing to do that, as I've stressed to J. several times. (Ha. Stressed.)

But not even this kind of safety net has made J. feel safe, and on his first day at his own desk after training he pretty much panicked and said he couldn't do it. His HR manager and trainer talked him down somewhat and suggested he take off and see his doctor. They know he is on disability and are wonderful mentors to help him work toward a full-time job--but even these assurances haven't been enough to give J. the confidence to do the job.

J. sees his wonderful psychiatrist tomorrow; I'm accompanying him, and we'll talk about the situation. Though I far prefer an approach to mental and all disease with no medications, as the mother of a person with long-time mental health issues, I have come to accept the need for these biological agents to treat what is largely a biological disease. Something has to make those synapses connect, and when J. gets to a certain point no amount of coaxing, coaching, or pleading will do any good and can, in fact, do harm.

Stress plays a huge role in J.'s equilibrium, just as it does in mine, and the last thing I want to do is force him over that edge where he loses every shred of confidence, loses, in fact, his very identity, as happened during his major mental break a decade ago.

I simply cannot watch that happen again. And so I teeter on tenterhooks of not wanting to coddle him and not wanting to push him too far.

No one who hasn't lived through a similar experience can know the psychic pain of watching your child wish for nothing more than acceptance from others and a decent wage without major anxiety and seeing how hard it is for this amazing person you know and love to achieve those things.

May God, if he, she, or it exists, bless the individuals going through disabling neuropsychiatric disease as well as those who love them. It's not an easy row to hoe. I wish I had some kind of pithy, hopeful "dismount" to this episode, but I don't. Reality can be harsh.

That doesn't stop me from hoping, though. I still believe in all of J.'s capabilities. He would make a fun, interesting, loving partner for some lucky guy. The right job for him does exist. I just hope, for his sake and mine, that job is not too far in the offing--and a romance with a really good person would do wonders as well. I just want J. to get his mojo back--he's so great when he's in a good place mentally. I hope the tweak in meds does the job!

______________

Update: J. did give up the job. However, the increase in his Effexor has already made a big difference. As he put it, all the noise in his head has quieted. Those negative, debilitating voices have shut up--thank goodness. (Anyone with anxiety will know what I'm talking about there.)

The great news is that J. is feeling so much better that he is eager to find a job. He doesn't want to go back to the call center and, despite all the advantages of that job for him, if he hates it and it makes him feel "cray," as the young folks say, it's simply not the right job for him.

We are so grateful for his psychiatrist who listens and counsels and has always been there for J. in the most difficult of times. He saw J. (and me) after hours on a Friday evening. How many docs would do that? And his counsel is truly wizard-like. He is a sunbeam in the darkness of J.'s struggles. What a difference the right doctor can make. And "right" is not nearly the adjective this man deserves.

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

2015-07-29T05:56:00.000-07:00

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

2015-07-17T01:52:00.002-07:00

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

2015-06-20T23:27:00.000-07:00

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

2015-06-05T20:28:00.005-07:00

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

2015-04-16T22:18:00.000-07:00

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

2015-04-01T01:51:00.001-07:00

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

2015-03-16T19:33:00.000-07:00

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

2015-03-05T19:05:00.001-08:00

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)

Episode 58: More Sleuthing: Brain Tumor? If So, That Could be Lucky! OR Parkinson's (Not Lucky)

2015-03-01T02:45:00.002-08:00

Okay, so I'm not necessarily thinking that I have a brain tumor.

However, in fact, in January 2012 I was found to have a mass in my sphenoid sinus. The sphenoid sinus lies right next to the brain stem, right where the hypothalamus lies and directs autonomic functions by sending hormones to the pituitary gland.

The sphenoid sinus is the deepest one,
located next to the brain stem where
autonomic functions are governed.

And, as you know, sports fans, I identified dysfunction in my autonomic system long ago in my quest for answers to my health problems. For instance, the hypothalamus controls such autonomic functions as sleep and wakefulness--identified in my case as idiopathic hypersomnolence (in other words, I sleep way, way too much and am powerless to change that), breathing (an ongoing problem), appetite (another problem for me these days), heart rate (a possible problem for me, as identified on a stress test and ECGs), temperature control (I'm about 20 degrees warmer than everyone else, and not from hot flashes), and more.

Symptoms of brain tumor/cancer listed at the Canadian Virtual Hospice include:

increased sleepiness - I obviously have that;
decreased ability to move around - very clumsy these days, including a fall I'll discuss in this episode;
trouble speaking or understanding conversation - I've already posted on my losing some fluency while talking and very frequently using weird substitutions for words (substitution aphasia);
loss of memory and especially the ability to form new memories - I can still form new memories, but I'm not nearly as sharp about things as I used to be and have noticed some real holes in my memory for recent events;
weakness, which may affect only one side of the body - I definitely have overall body weakness, and today I had a weird weak feeling on the right side of my face;
seizures - None of these, thank goodness;
extreme mood changes - I don't think this is going on, but I do know I've had some despondent moods lately far beyond what I normally feel.

Of course, I have already received a diagnosis of neurodegenerative disease, so perhaps all this stuff relates back to that--but I'm thinking that if it turns out, instead, that the culprit is this sphenoid sinus mass, I might actually be CURED! Or at least symptoms could be slowed down. And since symptoms lately seem to be speeding up, that would be an absolute dream.

I recently posted about increasing headaches that are intractable to all meds I've tried, including the Tramadol prescribed to me because I'm not supposed to take NSAIDS due to my (mild) kidney disease. But in desperation I did take NSAIDS when the Tramadol didn't work, and yet nothing really helped. I just suffered with it for days and nights, five or six or so.

Of course, masses in the sphenoid sinus can cause headaches. In fact, I spent a little time researching those masses once again. I'd already read that all sphenoid sinus masses should be investigated. In my case, that wasn't done when it was found early in 2012, nor has anything been done since. My Ear, Nose, and Throat (ENT) specialist told me it was just a polyp and not a problem.

And who am I to argue that I'd seen literature saying it should be investigated anyway? You have to pick your battles, as I've learned--and what I've actually learned, basically, is don't even bother to battle because your research and theories will be utterly ignored, if not ridiculed (as happened to me by a neurologist at Johns Hopkins).

But now that I have these new symptoms, I'm going to take that earlier report of the sphenoid mass to the eminent Dr. A., my neurologist, when I see him in April. I already reported in The Mary Dell Show recently how disappointed I was when I called his office about the headaches and his message came back to me as "If the headaches are bad, go to the emergency department," a non-answer if I ever heard one.

I've learned the ED is not the place for someone with my type of health problems. I mean, obviously, if I break an ankle or I am positively in a heart attack, I'll go. But for something as nebulous as headaches, very little will be done. Maybe an MRI, but one of that particular sinus? Doubtful. That's why we patients should be able to go to our doctors, NOT the emergency department, with these kinds of complaints, but it seems the buck is being passed by nearly all doctors nowadays, who are sending patients to the ED rather than scheduling an appointment in the office.

And the ED is known to be the most expensive place health care is dispensed, and all kinds of programs exist to keep patients from going to the ED for routine care, so why is it that doctors are bailing on us and sending us to other doctors well versed in emergency medicine but not necessarily in our individual problems, including neurological ones?

Ah, well. I've already complained enough about that.

Sphenoid sinus headaches from inflammation are said to cause pain at the base of the skull and neck and on the top of the head, and those two places, along with pain behind my eyes which would probably be the frontal sinuses--though some sites say the sphenoid sinus also causes pain there--are exactly what plagued me during these recent headaches. The sphenoid sinus is located right between the eyes, but relatively deep in the head.

Of course, my problems in the sphenoid sinus and my other sinuses might, in fact, be simply related to my diagnosis of granulomatosis with polyangiitis (Wegener's granulomatosis), which I was told at this point is limited to my nose and sinuses but which is known to cause problems in other organs, including the brain.

In other words, the possibilities are pretty much myriad, but no one--not a single one of my specialists--seems very curious to find out what is actually going on.

Anyway, in addition to these very sick headaches of late, I have a couple of new clues that could mean the mass in my sphenoid sinus has swollen. The mass doesn't have to be malignant to cause major problems; just by this deep sinus's becoming inflamed, according to the literature, pressure can be put on the brain and cause serious symptoms, leading to severe illness or death.

So, here are the new, and in one case not-so-new, clues:

Dysguesia: This is a disorder of taste and involves sudden changes in a person's sense of taste. Most frequently, foods we loved suddenly become unappetizing. This has been happening to me quite a bit of late. In fact, most foods are turning me off these days.

I first noticed this problem about six months ago when I suddenly couldn't stand the taste of Pepsi. As a lifelong Pepsiholic, this was a major--and sudden--change. For most of my adult live, I've regularly drunk so many Pepsis a day I'm embarrassed. Then one day--Yuck! Pepsi! Couldn't stand it!

I then began drinking ginger ale like a fiend. I couldn't get enough of the stuff, and in the past I've never liked it very much. I started going through close to a liter a day, grateful that even if I was taking in a ton of sugar I wasn't taking in caffeine. This went on for months, fueled by how cheap a generic liter of ginger ale is compared to Pepsi or Coke--we'd regularly find them for 72 cents apiece!

Then, about a week ago, after the headaches started, I could barely tolerate the taste of ginger ale anymore. Boom. Just like that, yuck on ginger ale.

Very weird. Other foods have gone the way of yuck as well, pretty much all of a sudden.

Even smells can be affected. Yesterday afternoon, in the midst of hypersomnia, I could smell ground beef cooking on the stove--Honey was making tacos. I've always liked the smell of ground beef cooking, but this time it smelled atrocious. I did eat the tacos later, but today he made roast beef and mashed potatoes, and for the first time in memory I didn't even like the taste of mashed potatoes, one of my favorite foods.

I sure hope this thing goes away!

Out-of-Control Sneezing and Productive Cough. I've written about my "productive" cough over the past few months--this means that the cough brings up phlegm. I also have been sneezing like a maniac lately. Both of these are symptoms of sphenoid sinusitis, or any sinusitis, that causes infection in the brain, according to Sinus Reference.com. Obviously, a brain infection can be serious.

REM Sleep Behavior Disorder. I've commented extensively on this recently. I'll link to those posts momentarily. This problem, too, came on very suddenly and swiftly just when the headaches were at their worst. (I'm having some relief lately, but the threat of those sick headaches is always there, lurking just below the surface.)

REM Sleep Behavior Disorder is frequently a precursor (or concurrent with) Parkinson's Disease, so I have also spent some time researching that disorder. (N.B. I still think I may have myotonic dystrophy but have not yet gotten the DNA results--but I guess it's possible to have more than one of these things at a time.)

Something happened a year ago this past Christmas that also could suggest Parkinson's, according to "Talking While Walking Puts Parkinson's Patients at Risk for Falls," published by Florida State University.

Lack of Balance/Falling. Just before Christmas 2013, my son J. and I were walking along the sidewalks in Frederick, Maryland, while Christmas shopping, having a happy conversation about the day's activities. Suddenly, out of nowhere, my legs just didn't seem to work anymore. I recognized it as it happened--I just couldn't coordinate them; I felt a massive moment of confusion, and then I pitched forward with the momentum of walking and landed flat on my nose on the sidewalk.

I can still remember seeing that sidewalk rushing up to me, and my arms giving out rather than protecting my face from the fall. (The arms thing, of course, makes me think of muscle weakness, a symptom I also have but which the "wonderful" (NOT) neurologist at Hopkins also told me I wasn't experiencing, even though she didn't really question me about any such symptoms.)

I must have blacked out momentarily because I was later diagnosed with a concussion.I just remember lying on the sidewalk in a massive pool of blood, my nose and face really hurting, and slightly freaking out. J. was right beside me, remaining amazingly calm--I really appreciated that in the kid, who has had his own set of problems his whole live and could have also freaked out badly. But he didn't.

A wonderful meter maid (I'm sure there's a more politically correct title for the job) saw it happen and rushed over to me. Also, two men from the Weinberg Center for the Arts, a wonderful venue, who were just about to close up for the day witnessed the fall and rushed out to me with paper towels and a wheelchair. I left a ginormous blood stain on the sidewalk right in front of the Weinberg. It's probably still there.

The meter maid thought she saw me trip, and while there may have been a slight tripping over something, I don't recall that at all, and my inability to right myself once the confusion set in was far out of proportion to any minor tripping I might have had, if any.

I guess the blood pooled in my face because I ended up with a black eye, as well as a swollen (but thankfully not broken) nose. Although the incident was very scary, I was touched by the human kindness it brought out in those who witnessed it. Once the ambulance came, I was briefly checked out and asked whether I wanted to go to the ED. The bleeding had stopped, and going to a hospital was the last thing I wanted to do. I just wanted to get home (a two-hour drive, ugh) and rest. I did that until I threw up later and went to an ED near home and was diagnosed with the concussion.

Me, after the fall.

The point is, it all happened when I was walking and talking at the same time, something I rarely do as I'm not much of a shopper or walker (unfortunately) anymore--too exhausting.

"Parkinson's disease and multiple sclerosis are two common diseases that can affect the brain resulting in loss of balance," says the Neurology Muscular Dystrophy and Neuropathy Institute. And I have indications of both of those diseases; REM Sleep Behavior Disorder is highly associated with Parkinson's Disease. White matter lesions, which I have in abundance according to Dr. A., often occur in conjunction with Parkinson's Disease but are not necessarily due to it. However, of those white matter lesions, Dr. A told me he'd diagnose me with multiple sclerosis based on my symptoms and those lesions, except I didn't have any lesions in my spinal column, which almost always happens in MS. I was also slightly older than the normal range for diagnosis MS.

Thus, I can't help but worry that this incident of loss of coordination and falling was due to whatever is still happening in my brain and is now bringing on the headaches and REM sleep behavior disorder as well. The problem is, according to the Florida State University article, one of "cognitive loading." Talking while walking is actually a very complicated thing to do, and those whose brains are impaired have trouble managing both simultaneously.

Oh, well, this is all much ado about nothing, I know, until a doctor decrees one or the other (or something else) to be the culprit. But my faith in the medical system is on such low ebb these days that I can't help but doubt I'll be taken seriously or given the right tests.

Now that I have the "neurodegenerative" diagnosis--even though the exact cause hasn't been identified--I worry that all these symptoms will just be considered par for the course, and a more acute cause--such as a sphenoid sinus tumor or inflammation, or even an ectopic pituitary tumor in the sphenoid sinus--will not even be investigated.

Such is the frustration of a patient here where I am, Down the Rabbit Hole of today's health care system.

I'm still trying hard not to get too discouraged and give up entirely, and I do think my health sleuthing is under control--NOT an obsession, just a normal curiosity for someone who has the tools to actually research the medical literature, as well as a burning desire just to KNOW.

I actually made an apple pie tonight, and now I'm going to practice making some tea sandwiches. A friend asked me to cater a service for her husband who died recently. So, you see, I'm not just sitting here obsessing about brain tumors and Parkinson's.

I just wish I could get a doctor to take all of this seriously and actually investigate the causes of all these problems.

But, as my ex-husband used to say all the time, "People in hell want ice water."

And they're not likely to get what they need, either.

It's elementary, dear Watson.

Episode 57: From Peak to Poverty, Thanks to Poor Health: This Story Could Be Yours

2015-02-25T22:14:00.001-08:00

There is "no difference among men, in intelligence or race, so profound as between the sick and the well" (F. Scott Fitzgerald, The Great Gatsby).

I was born with far more advantages in life than so many others on the planet. From parents who loved me and were committed to giving me the best possible childhood and who made enough money so that I never worried about having food in my mouth or a roof over my head, to the happy accident of being raised on the outskirts of Washington, DC, one of the most powerful cities in the world with a myriad of opportunities, I have been utterly blessed.

Good grades came easy to me, and as I've bragged numerous times, I scored in the 99th (the highest) percentile in abstract reasoning in the standardized Iowa tests given to schoolchildren in many states, meaning that my scores were better than 99 percent of the rest of those kids.

My father's successful career in electronic engineering--with a patented update to a radar altimeter that flew in all commercial aircraft of the 60's, if I correctly recall what he told me--gave us a comfortable home. My brother followed in my dad's enterprising footsteps, becoming a computer whiz on the ground floor of that industry, retiring at the age of fifty as the head of computer security at a big state university, itself known for its technological advances.

My mother was, and my sister and other brother are, certainly no slouches in the intelligence department. Mom's facility with language gave her a sharp (but friendly) wit--she could not let a pun pass her by--and a talent for writing silly but clever poems for friends retiring and for scrap books for my kids.

Fresh out of college after taking off a few years to travel as a young, idealistic member of the hippie generation, my sister landed a plum job in a big suburban county teaching English in a magnet school. My brother, who won a golf tournament at the age of sixteen, went on to purchase and run a highly successful hardware store close to Dupont Circle in Washington, DC, and acquiring property in that high-priced area through the years.

And then there's me.

Like I said, I had all the promise in the world. I did have a couple of deficits, though, which no one realized when I was young--not even me, though I certainly felt their effects. These, generalized anxiety (plus a healthy dose of social anxiety) along with attention deficit disorder (ADD), made navigating the difficult waters of growing up more difficult for me than for my siblings--though that ride isn't easy for anyone. It's just that my siblings landed in better spots than I did, despite my many years of trying.

After skipping my junior year of high school and graduating at the ripe old age of sixteen, I (stupidly) decided college wasn't for me and opted for secretarial school instead. I was tired of school (that ADD thing), and I wanted a life like Mary Tyler Moore's on her popular show of the day--independent professional woman with her own cute apartment.

But by the time I was nineteen, I was married to my high school sweetheart, and we consciously began a family. Having been temporarily seduced into joining the Mormon church, I couldn't wait to hold a baby in my arms like those in the arms of all the other women at church. During those years, though I adored my babies, I regretted I hadn't gone to college and took a few classes when I could: Novel writing I and II, British Literature I and II, Intro to Philosophy.

And then--BOOM. Blessed childhood, future full of promise--all came to a screeching halt. The first clue that my life wouldn't be as perfect as I'd always expected it to be came when my first baby arrived two months early and suffered several severe health problems, including a skull malformation known as craniosyostosis that would affect his appearance and his psychic health forever (though the latter, I'm so happy to say, is very good at present, and I hope and pray it will continue to be so--and his appearance is absolutely beautiful, and I'm not just saying that because I'm his mom). In fact, I'm convinced to this day that my difficult pregnancies were the first real signs of the neuromuscular disease I'd later be diagnosed with.

My twenties were tough--but you can see how happy I am
holding my little preemie son (at two months)! He, and I,
unfortunately, had many health problems to come.

Then my dad dropped dead of a heart attack after a night out ballroom dancing with my mom, as they'd met some thirty-eight years before. And just four years later, my mom, who had battled breast cancer and then liver and pancreatic cancer in those four interim years, died in her bed in the home they'd bought in 1949.

My marriage, not surprisingly, given our young ages when we married and lack of much of anything in common, fell apart.

That about sums up my twenties.

Determined to make my thirties better, and to honor my dead parents and their shared belief in the value of education, I moved with my two little boys to a little mountain town in Appalachia with a state school. My goal was to teach English.

I'd wanted to teach since I was a little girl, and I'd wanted to write since I was a little girl, too. I used to dictate stories to my mom, who would type them up, leaving big blank pages for me to illustrate. Once I began English classes in junior high, I knew that's what I wanted to do. But after graduating from high school, my pathological shyness made me doubt I could stand up in front of a bunch of kids and command a classroom--and what was the point of going to college if I couldn't be what I wanted to be, I'd reasoned at the wise old age of sixteen.

I had so many wonderful teachers through the years who'd encouraged my writing, from Miss Rosenthal in fourth grade who'd assigned weekly compositions, to Mr. Bayz in eighth grade who'd declared my inscaping piece on the ocean "hauntingly beautiful," to Mrs. Righter who'd felt I was wasting my time in a regular core class and referred me to a gifted reading specialist who had me doing independent work while still in 8th grade, to Mr. Fowler and Mrs. Crowe who'd read my papers and stories out loud to my 9th and 10th grade classmates, to the even longer list of English professors who'd influenced me in so many ways as I worked through a BA, then MA in English, and on to about twelve credit hours into my PhD program in English.

I wanted to be one of them, and after my parents' deaths made me the beneficiary of enough money that I could choose a new life for myself, I decided it wasn't too late to pursue my dream job, even if I still was pathologically shy. I told myself I'd get over it, and eventually I did.

In the fourteen years between graduating from high school and enrolling full-time as a college freshman at age thirty, I'd worked as a legal secretary in a small firm in Silver Spring, and then in a large corporate firm in DC: Arent, Fox, Kintner, Plotkin and Kahn. I worked for one of the top international partners, and my skills were in high demand whenever I could manage to work overtime (which was difficult since I had my little boys at home).

I was promoted in the firm to the personnel coordinator, overseeing the leave requests and scheduling of 105 secretaries and assisting the Director in hiring and other personnel matters. I went on to become the assistant Attorney Recruitment Director.

Then I tired of the long commute and took a job as a senior secretary for a government engineering contractor at NASA's Goddard Space Flight Center.

But I was dissatisfied being "just" a secretary, and when my parents' estate settled, it seemed my career could do nothing but soar when I left Goddard to move to the mountains and pursue my dream of teaching English.

And my dreams continued to soar as I worked through my classes, earning A after A. I was where I was meant to be. When I graduated in 1994, I received Departmental Honors from the English Department, given to one student per graduating class. I also took General Honors and graduated summa cum laude.

The icing on the cake was receiving the Maryland Collegiate Honors Council Outstanding Honors Student of the Year award, also in 1994.

While working on my degree, I took care of my boys as a single mom and worked part-time at a local community college, where I eventually moved into planning and facilitating health courses for licensing and accreditation of health professionals. One of my coworkers, a woman nearing her sixties, told me during that time:

"The world is your oyster. Once you get this master's degree, you will be able to command your salary."

I was admitted to the West Virginia University Master's program in English and was granted a Graduate Teaching Assistantship with tuition waiver, as well as other scholarships. I took a job in a non-profit health education agency just after finishing my Master's Degree, and again I excelled.

When a co-worker became sick and was unable to write a big federal grant application to continue a program employing several of the persons at the agency became ill, and our associate director who normally would have taken up the slack was on vacation, I took on the job and, in one week, wrote a major grant application that was funded for close to a million dollars. From that point on, I wrote numerous federal, state, local, and private grants, garnering millions of dollars in the total of nine years I'd eventually work there.

Never happy letting an opportunity go by, when the non-profit agency's health librarian left the job to take a position as an executive director at another agency, I enrolled in a library science Master's program at the University of South Carolina and graduated with 3.98 grade point average a year and a half later while working full-time.

Ironically, the one "B" I received during that Master's program was in grant writing, something I'd done successfully professionally for some time by then. (I'd missed one of the minor requirements, as I recall.) However, I turned the application I'd written for that class into a viable one, submitting it to the federal Institute of Museum and Library Services. And we won a National Leadership Grant with that application.

As much as I loved that job, though, eventually I landed my dream job: teaching English in a two-year college in West Virginia which, after my first year, became part of the system of my alma mater, West Virginia University. As hard as that job came to be--teaching freshman English to 28 kids per class with a five-course load is enough to kill anyone--I had finally arrived exactly where I was meant to be.

I loved teaching. I didn't love grading, but I did it with every ounce of my soul, wanting nothing more than to help each individual student reach his or her writing potential. I still believe fervently that the ability to write is the key to success in academia and beyond. And I loved being the slightly wacky English professor who walked into her Poetry and Drama class wearing a Greek toga (over her "normal" clothes), a band of laurel leaves in her hair, demonstrating strophe and antistrophe while reading aloud from Oedipus Rex.

When teaching Hamlet, I'd assign key scenes to groups, and the students would practice and bring in props and eventually act out their scenes on the stage in the building where I taught. I still have a plastic sword brought in by one class's Hamlet--he'd never come to my office to retrieve it, though it was his little boy's. Another Hamlet scored a skull from the Biology Department for his "Poor Yorick" scene.

One of my students as Hamlet, with a skull he'd scored
from the Biology Department, acting out the "Poor Yorick" scene

After a class in which students took different parts in Christina Rossetti's "The Goblin Market"--twittering as the eroticism of the dialogue came alive, several of the students left the room calling out in the hallways: "Come buy! Come buy!"

An Appalachian Lit class became a learning experience for me, as every student in the class had been born in West Virginia, while I was a Washington, DC, native! The final paper involved each student's telling his or her story about growing up in Appalachia, from the daughter of two hippies who'd spurned the city to homestead in the mountains to those who had grown up in the near-by town of Piedmont, immortalized in Henry Louis Gates' memoir, Colored People.

Gates himself had attended the school where I taught, as I informed every amazed class I stood before, and he'd been inspired by his English professor, Tony "Duke" Whitmore, to pursue a degree in literature rather than medicine. The Duke had died three years prior to my starting at the college, and I wonder to this day whether I'd still have a job if he'd still been president when I became sick.

I wanted to be a Duke Whitmore inspiring students to love literature. I wanted to be a Mr. Keating in Dead Poets Society, a "Sir" in To Sir With Love, a "Teacher" in Catherine Marshall's Christy. I was thrilled to be working in a school whose students weren't born with silver spoons in their mouths. My "kids" came from the hollows of West Virginia and distant inner cities where the college recruited. I loved the "C" student in whom I could make a real difference; I knew the A's and B's would be fine. Of course, I enjoyed them, too, and I admired them, and I tried to help those struggling with D's and worse.

And I was well on my way to achieving what I thought would be my lifelong (if a bit late) teaching career, earning merit points based on my student, peer, and Review Committee evaluations. In my six years teaching, I was nominated "Outstanding Professor of the Year" twice--the awards went to professors who'd been there longer--and, in a school newspaper poll of fifty students in the cafeteria, I was runner-up for "Most Unforgettable," second only to the beloved cafeteria lady, the students' mom away from home! And I was told by the campus provost, just a few months before being given my pink slip, that I was a "shoo-in" for tenure.

I remember walking across the quad under the massive oaks and maples, realizing that yes, Mary, you finally did it! You have found the place where you'll be the rest of your life, doing exactly what you've dreamed of doing your entire life.

I had a campus full of friends in the coworkers I enjoyed every single day, along with the fondness and appreciation of most of my students. On the little board outside my office, where I hung my New Yorker cartoons as many other English profs had done before me, a student had written at the end of the semester: "Ms. Spalding rocks!"

And then I was out on my ear.

Why?

Because I got sick.

Yes, this is the simple truth. No other truth exists.

Beginning in the years I was going to WVU for my Master's classes and working at the community college and then the non-profit agency, my stamina became an issue. Yes, I was doing a lot, but I began feeling like an 80-year-old woman.

Long story short, I came down with severe, intractable hypertension at the old age of 38, even though I wasn't overweight or stuffing myself on salt or anything else. My only risk factor was my father's legacy of hypertension. That was enough.

Through the years, my health tanked. After thirteen years of blood pressure regularly going as high as 208/135 (that was the worst, but it came close to that nearly daily in my last year of teaching), I was finally diagnosed with an adrenal adenoma, adrenal hyperplasia, and primary aldosteroism, also known as Conn's Syndrome.

Shortly after that diagnosis, I spent a summer in apparent heart failure and, determined to get to work in the fall, kept telling myself I'd feel better until one night I was certain I was going to die and went to an emergency department.

I was admitted, told I was indeed in heart failure and had probably had one or two heart attacks already.

There I was, forty-nine years old, on my deathbed.

And from my deathbed I talked to my chair in the English Division at my college, who covered my classes. But I didn't get better, and it was clear I'd need yet another semester off. (I'd taken one off when the adrenal problem became known, and then I'd worked .6 FTE the following semester in the tutoring center while trying to regain my strength.)

And because I wasn't worth another 15 weeks of recovery time--I truly believed then that, once I was adequately treated for the newly found adrenal problem I would be able to go back to work without any problems--I was told I wasn't wanted back. This, as I say, just a few months after the campus provost told me I was a "shoo-in" for tenure. What had changed? Nothing but my health. And if you think a person can't be canned for his or her bad health, think again.

You see, I'd inconvenienced the Dean of Curriculum and Instruction, a curmudgeon disliked by all the faculty. I'd pissed him off by going into heart failure just as the semester began, necessitating his replacing me for the semester. Somehow, I hadn't managed to dash off a request for a leave of absence before arriving in the ED in heart failure. How unprofessional of me.

Anyway, I got the official letter saying I'd failed to ask for that medical leave of absence in advance and was being asked for my resignation, or be terminated. Of course, I didn't resign. Why should I? One of my coworkers had suffered a massive stroke the same semester I was out for my adrenal problems, and he clearly would never teach again, but he remained on the roster until well after I was canned.

Oh, I tried to protest. I filed an appeal that failed, as nearly all first ones did, but I was eligible for two more appeals, and I was told by numerous persons, even one in the West Virginia Higher Education Council, that I would surely have my job reinstated. I overheard the WVU lawyers in the ladies' bathroom during a break in the hearing I did attend saying, "Wow, this really shows how bad the system is."

But guess what, sports fans?

I was sick. Very sick. Filing a bunch of paperwork and dealing with all the red tape of an appeals process was beyond my ability at the time. I needed to heal, to recover.

All my life I'd been blessed by coworkers and others with whom I interacted on a daily basis who valued me. When I left the DC law firm, one of my bosses pulled me aside and begged me to stay. "You aren't like the rest," he told me. "They're the worker bees. But you, you are someone special."

Not very special, apparently.

Losing my dream job happened seven years ago, and sometimes I still wake up and wonder how everything went to hell so fast and so completely beyond my control.

After a year of unemployment while I struggled with the hypersomnolence that has taken over my life today, I was rehired by the health education non-profit agency, where I again wrote millions of dollars of funded grant proposals.

But eventually my health problems interfered too much with the organization's structure--it got to the point when I could barely be awake during the day, only at night--and though I'd argue I can write better at 3 a.m. than most can any time of the business day--it's true I couldn't fully participate in the day-to-dayness of the job. Though I was working on several major projects at once and, I still believe, held my own, I could do that only by working on my own schedule, and that just wasn't cutting it anymore. I knew it was time to go, and my boss, who is a friend, thought so, too. I needed a long rest, actually.

And, fact is, I couldn't have kept teaching full time. I couldn't keep working a full-time job.

My talents and abilities have been hijacked by my utter lack of energy, the result, I finally learned, of a neurodegenerative disease. I still don't know which neurodegenerative disease, but my neurologist said he'd diagnose me with MS except that I don't have lesions in my spinal column. I do, however, have lesions throughout my brain, along with many other symptoms of neurodegeneration that I've chronicled here. The latest is REM sleep behavior disorder, during which I act out uncharacteristically violent dreams, a common precursor to Parkinson's and other neuro diseases.

And so here I am, put out to pasture.

I try to stay busy. I love to sew and embroider and read and write, and I do those things. Once this god-awful winter is over, I will love being out in the yard and woods whenever I have the energy to do so.

I still believe I could teach one or two classes a semester. I just can't work full-time anymore. But I still have so much to give.

The reality of my situation, where I am today, hurts. I try not to dwell on it, but some days it's difficult to push away the nostalgia and the wonder about what might have been. I went from being at the peak of my professional life to unemployable in just a few years, and not because of anything I did to make that happen, other than get sick.

The psychic pain is the worst, but the practical side of it sucks as well. At long last, I enjoyed a comfortable salary for someone living in Appalachia for a couple of years, but in an even briefer period of time fell unceremoniously into poverty.

I now receive federal disability payments, thank god, but they are barely enough to keep the home where I still live with my adult disabled son. It's the only tangible thing I have to show for my struggle to attain professional success, which I did.

Even landing my dream job. And losing it, through no fault of my own.

I tell this tale to let the world know that those of us in the 47 percent are not all here because we are lay-abouts and losers. In fact, I'd venture that few of us are.

In fact, you could find yourself right here where I am in the blink of an eye, no matter how successful you now consider yourself.

You know the old saying, "There, but for the grace of God ...."

Oh, I still live in the grace of God, if God exists. I have nothing, truly, to complain about. I've never worried, really, about being hungry or bombed out of my home. I still have all the blessings of my birth, even if the outward acknowledgement of those blessings is not so obvious. I am not bitter, and I am not done.

I write simply to remind us all of how easy losing what we have can be, and to keep gratitude at the forefront of our lives. And, yes, to tell my story. Because I can still do that.

I can still write.

Epilogue: The very same night I posted this episode (tonight, in fact, or this morning, given that it's almost 2:45 a.m.), my former boss at the non-profit asked if I'd be willing to look over a project I could possibly do on contract. So here's another reason for this episode, and it goes out to others who are suffering from chronic illnesses that nipped their promising careers in the bud: Don't give up. It's hard; it's very, very hard, but don't ever give up. We are sick, but we are not without talents and abilities that can find their places in this world. We are sick, but we aren't done.

Episode 56: Latest Health Care From Doctors of All Stripes: "Just Go to the Emergency Room"

2015-02-18T12:39:00.000-08:00

Thanks, ClipArt101.com, for this
very pink physician! Not that
color has anything to do with
how good or bad a doc is--
just appreciate the free graphic.

Remember when the stereotypical advice from a doctor was "Take two aspirin and call me in the morning"?

Well, guess what it is now?

"Just go to the emergency room."

This is yet another example of today's health care system's passing the buck at the expense of each and every patient, AND the system itself.

I've worked in health care for many years, and I know for a fact that the emergency department is the most expensive place for a person to seek care.

So why are doctors increasing health care costs by sending patients there instead of seeing them in their offices?

In today's case, I have to admit it is my dear, eminent Dr. A who has resorted to this non-answer. He is my neurologist, and I admire him greatly, but when I called today and told the office about my nearly non-stop headache for the past week and my new sleep behavior problems, I was called back and told, you guessed it, to go to the emergency room.

Why aren't doctors taking care of their patients anymore?

About a year ago, I was having a myriad of problems, and my regular doctor, or PCP (Primary Care Provider) in medspeak, told me I just needed to be admitted and a bunch of tests run to figure out what was going on.

Stupid me, I told her I didn't want to go to our local hospital, since it nearly killed me a few years ago, and said I wanted to go to one in the next town over where a number of my specialists are.

The next day I changed my mind, called her office, and received a call back that said, you guessed it, "Go to the emergency room."

When I did that, I told the attending physician that my PCP had said I should be admitted.

He gave me a scornful look and said, "What are we? A McDonalds?"

And the visit went downhill from there.

Sports fans, I've been to the emergency department, and it is an utter waste of time unless you have a gunshot wound or have broken an ankle. For the problems I have, I'm given the same battery of tests, and none of them pinpoint the problem. I learned this after I was told numerous times when I couldn't breathe properly--NOT when I actually could not catch my breath to the point that I was about to die of suffocation, but chronically, and seriously--to go to the ED.

And each time I went I was given the same tests that showed nothing at all. And yet, calling specialists about the problem, I was still given that same old non-answer. And despite all the signs and symptoms of being deoxygenated on a regular basis, no one has cared enough to really get to the bottom of it.

Send patients to the emergency room to doctors they've never met, racking up costs that are higher than if we are seen in a doctor's office, without the benefit of our own doctor's history with us and knowledge of our case.

Does that make sense? Yet, that's what doctors are doing today.

My headaches are bad, and I told the person on the phone that, but I said they weren't quite as bad as migraines, which I've had before. It's true they are affecting my ability to eat anything--everything looks nauseating to me--and I know migraines cause nausea. But I also know what a migraine is--you can't stand being alive; light hurts; sound hurts; and vomiting adds to the misery without giving any relief.

No, my headaches right now aren't that bad. But they're pretty darned close. I just lie in front of the TV, with the sound low, and pretty much stare into space. I feel nauseated if I think of food, and all I can think about is the pain in my frickin' head. I mean, they're miserable.

Is that enough for me to go to the ED?

I don't think so. I really don't.

But maybe my doctor could see me; maybe he could talk to me and try to get to the bottom of the problem. He is a neurologist, after all--and the emergency room doctors are NOT. Moreover, I'll be lucky to see a doctor if I go there; most likely I'll see a physician's assistant or a nurse practitioner, which are fine with colds or flu or that sort of thing, but they don't have the training to deal with my myriad of health problems, including serious neurological issues.

If my neurologist had agreed to see me, maybe he could have ordered the appropriate tests to see whether, perhaps, the mass found in my sphenoid sinus in 2012 has spread. Maybe he could tell, by the way I describe my headache, what type it is. Maybe he could prescribe something to help.

I am so confused. Supposedly, doctors are on board with reducing health care costs. So why are they now, as a matter of course, sending their patients to the Emergency Department, the most expensive place to receive care?

Not only that, why are they forsaking their patients this way?

I don't know. I guess I'll go to the damned ED if my head feels like it did last night--and the headaches get worse as the evening wears on after I wake up. (Being hypersomnolent, I sleep all day and usually emerge sometime between 6 pm and 9 pm, and that's when the headaches have begun.)

I'm not happy about it, though. Why go for substandard care at increased cost for something that could be handled through my own doctor's office?

Well, sports fans, I guess I don't have any damned choice. I feel like crap, but I have to pull myself off the couch, go out in zero degree weather here in the mountains, and drive to a place where I"ll have to sit among a bunch of people coughing and hacking, only to be seen by a person without the neurological training to truly get to the bottom of what's going on.

Does that make any sense?

Oh, and I forgot. My car won't start. The cold has killed its battery.

True, I'd need a car to get to the doctor's office, but I could perhaps borrow one for such a trip--but when going to the ED, who knows how long it will take, and it's hard to borrow a car when you have no idea when you can return it.

Yes, it's just so easy when you're sick.

"Just go to the emergency room."

Hey, U.S. health care system, you are one sick patient. YOU'd better go to the emergency room! Not, as I already know, that you'll get the diagnosis or care you need there unless, indeed, you have a traumatic injury of some kind.

The ED is NOT for problems such as the ones I'm dealing with right now. But that's what I'm told.

"Just go to the emergency room."

Maybe it is a McDonald's after all. God help us all.

Episode 55: Headache, Nasty, Nasty Headache

2015-02-15T00:06:00.001-08:00

Thanks, ClipartPanda!
She looks like my mom!

This headache has lasted about four days now, though it briefly disappeared today before reasserting itself most obnoxiously.

Despite medicating myself with Tramadol, which my kidney doctor told me I should be taking rather than NSAIDS--your typical, over-the-counter pain killers--as well as Aleve Sinus and Cold (containing an NSAID--but desperation leads to recklessness), and 3 tabs of Ibuprofen (another NSAID) and back to yet another Tramadol, well, sports fans, the headache remains.

And it's a bitch. Honey gave me a heating pad to put behind my head, along the skull base, where it and my neck were hurting. But no sooner did the heat help that area that the headache moved to across the top of my head. Meanwhile, a constant low-grade pain and pressure resides right behind my eyes.

I've had headaches over the years, including bona fide migraines, complete with vomiting. These are not migraines, but they're fairly debilitating nonetheless. I know I don't feel like doing much of anything. It's Valentine's Day, and Honey had mercy on me and didn't even pressure me to make love.

He could see I was in pain.

That's one of the reasons I love that guy. Though making love to him is another reason I love him, and it would be nice to actually feel like doing that once in a while--but it's as if my sex drive switch has been turned off, literally. And not because Honey isn't the sexist, sweetest man alive.

But I digress.

This sudden onset of intractable headaches, combined with my also sudden and recent onset of REM Sleep Behavior Disorder, can't help but make me think something more acute than mere neurodegenerative disease (with which I've been diagnosed) is going on. Something becoming acute. What might it be?

Then I remembered: Two years ago, when my episodes of weakness and breathlessness upon slight exertion began, an MRI showed that I have a mass in my sphenoid sinus.

According to the literature, any mass in that sinus--the one closest to the skull base--should be investigated. I was told by my Ear, Nose, and Throat specialist (ENT) that mine was most likely a benign polyp or cyst, and that was the end of it. Unless it wasn't.

Tonight I did some more research and, in fact, even benign processes such as those suggested by my ENT, or mere inflammation, can cause symptoms such as headache--in the very areas mine has been hurting--and other neurological symptoms. For instance, problems with the trigeminal (5th cranial) nerve may originate with sphenoid sinus problems.

I've had about five instances of trigeminal nerve neuropathy, in which a light touch beside my nose led to an electrical shock down the side of my nose and across the bone above my top teeth. This is, in fact, the trigeminal nerve and one of its branches.

So now, sports fans, I can't help but wonder--is, in fact, problems in that sinus the root of my problems? I've already said numerous times that my medical problems frequently originate in the hypothalamus, a little bitty part of the brain just behind the sphenoid sinus, that is responsible for regulating the hormones that control our autonomic functions--sleep, breathing, hunger, sweat, sex drive, etc.--all of which have been problem areas for me for several years.

Oh, well.

One can only speculate.

And one can call the eminent, wonderful Dr. A, her neurologist, Monday morning.

It sure can't hurt to take another look at that mass in that ol' sphenoid sinus.

Wouldn't it be wonderful if what is happening to me turns out to be curable, albeit with a rather nasty and risky surgery? I'll take those odds over slowly degenerating neurological function, so here I am, almost hoping there is such a problem.

All I know is, I want this frickin' headache to go away.

Episode 54: REM Sleep Behavior Disorder Part Deux

2015-02-13T01:34:00.003-08:00

Yikes. This REM sleep behavior disorder thing has snuck up on me fast. Within the past two weeks, I've had two definite and one likely episode. I've already described two in my previous episode, but I'll recap them here and then tell you about the latest.

In the first, I woke in the middle of a dream in which I was fighting someone--perhaps a friend from childhood--and, though I'm hardly the violent type, I ended up kicking her as hard as I possibly could in the belly. Only it wasn't her belly; it was the end of the bed, and thank goodness none of our pups were sleeping there at the time, or they'd have been smashed or flung across the room.

The second is presumed, but no other logical explanation exists.

One day recently, I became aware of my finger hurting shortly after I woke up.

I saw two bruises on the back of my right ring finger between the knuckle and the tip. As I moved the finger around, the knuckle seemed to click back in place; it had been dislocated.

I had no memory of hurting the finger the day before, so it most likely happened while I was sleeping. Perhaps I'd flung it behind me and hit one of the spindles of the headboard. Who knows--I may have even wakened at the time, but I can't say. My arms and legs have been jerking all over the place while sleeping for a long time.

This is actually yet another sleep disorder that is found, again, with neurodegenerative disease as well as narcolepsy: period limb movement disorder. Really? Apparently so. I remember falling asleep in Germany in the room where Sabine, my best friend who was dying, slept next door. Every night I'd wake up after my arm struck the wall, horrified that I might have wakened my sick, sleeping friend. This sort of thing continues happening--I catch myself now and then.

As WebMD says regarding the condition, "These movements are very different from the normal spasms, called hypnic myoclonia, that we often experience initially while trying to fall asleep."

Scary, too, is that period limb movement disorder (and perhaps these other problems?) may be caused by antidepressants. I began taking Effexor shortly after it hit the market in 1996, and I've taken it ever since. Though I haven't been severely or clinically depressed at any time other than that episode in '96--brought on, I'm convinced, by my very bad reaction to Depo-Provera--the Effexor has been a life-saver, ironically, in controlling my anxiety. I'm on a low dose, but no one ever tested the drug over two decades. It doesn't seem entirely unlikely to me that the drug might have brought on this degenerative process.

Now we come to last night. Again, I woke in the middle of a dream--but just a moment too late, as I'd just punched Honey several times!

Right away I realized what had happened; I gasped and apologized. He just sort of grunted and kept sleeping; I wasn't sure he'd even felt it. I hit pretty hard, but he was covered in two layers of comforters--I tend to sleep on top of the covers, and he stays cocooned underneath. Probably a good idea especially now--much safer that way!

The fight in that dream is murkier for me; I just know I was fighting someone, and I'm pretty darned sure it wasn't Honey, and my poor innocent sleeping darling was pummeled because of it! Fortunately, WAS his chest and not his face that my fists connected with.

Today I asked him if he remembered my punching him, and he said he did. Perhaps, like my friend whose husband also has the disorder due to Parkinson's disease, he should line up some pillows between us in bed from now on.

This is scary stuff! Not only because I might hurt a loved one--man or beast--or myself. But because the condition is frequently a harbinger of brain degeneration.

According to WebMD, "The exact cause of REM sleep behavior disorder (RBD) is unknown, although the disorder may occur in association with various degenerative neurological conditions such as Parkinson's disease, multisystem atrophy, diffuse Lewy body dementia, and Shy-Drager syndrome."

Another cause is drug or alcohol withdrawal, but I'm not dealing with either of those.

Almost more disturbing to me is the violence of the dreams. I have always been quite good at remembering my dreams, and never have they contained much, if any, violence (other than a period decades ago in which I was the victim of violence--not the perpetrator). I can't help but wonder whether this condition also increases the level of violent content in dreams. As a peace nut, that scares me a lot.

In fact, "RBD is characterized by the acting out of dreams that are vivid, intense, and violent." There it is. Violence. Not how my brain, even my sleeping brain, usually works! "Dream-enacting behaviors include talking, yelling, punching, kicking, sitting, jumping from bed, arm flailing, and grabbing."

There's that arm flailing thing. And I lifted my body off the bed when I kicked that first time--it was a truly violent, all-body kick.

Very disturbing!

However, that violence is not indicative of a violent personality, as I already felt confident was true. "People with RBD are not more aggressive or violent than others when awake. RBD is a medical problem," says Sleep Education, a Web site from the American Academy of Sleep Medicine. "It is not a psychiatric disorder."

In fact, the Cleveland Clinic describes the dreams in this disorder as "distinctly altered"--one presumes meaning altered from "normal" dreams the person may have--"that are vivid, intense, action-packed, and violent."

Happy happy, joy joy, in the famous words of Ren and Stimpy.

WebMD states that "RBD often precedes the development of . . . neurodegenerative diseases by several years."

Well, la di da. I already have my diagnosis of neurodegenerative disease from the one doctor I see that I implicitly trust: the eminent neurologist Dr. A, as described in other episodes.

So, all I can surmise from this sudden burst of REM sleep behavior incidents is that the degenerative process is speeding up.

I know I've been sleepier than ever before. I'm having a harder and harder time doing much of anything, though I forced myself to bake sugar cookies for Valentine's Day today, and I spent the last couple of days working on a toddler dress with some of the fun fabrics I'd bought while making purses. Making toddler dresses for future sale on Etsy is how I channel my never-had-a-baby-girl blues.

The cookies aren't frosted and the toddler dress isn't done yet, however.

Still have to buy confectioner's sugar to make decorative
frosting for MOST of the cookies (we were out), but I did
manage to finish a few tiny linzer cookies. Yum.

Sleep so frequently intervenes. And though the hypersomnolence is a royal pain in the ass, having stolen my professional and much of my social life, sleep over the past couple of years has been mostly pleasant. Other than the night terrors and hypnogogic hallicinations described in my previous episode that happened decades ago, I've rarely had nightmares.

But now I'm having nightmares--violent nightmares--and they are bleeding into "real" life.

I don't want to hurt my doggies or my Honey--or myself, for that matter.

And I don't want to degenerate this quickly.

I like my brain.

I really do.

I'm going to miss it if it goes. I'm going to miss me.

In the meantime, pleasant dreams!