Episode 71: Feeling Faint: On Severe Heat Intolerance

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

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

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?

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

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

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

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

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

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

Okay, okay, okay.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Really?

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

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

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

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

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

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

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

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

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

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

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

Simplifies things, doesn't it?

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

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

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

___________________________

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

Episode 65: Healing Nature, Ferns, and Fairies

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

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

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

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

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

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

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

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

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

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

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

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

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

Where would you rather die?

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

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

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

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

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

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

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

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

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

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

Ferns Found on My Property

Eastern Hayscented Fern - Dennstaedtia punctilobula

Glade Fern? - Diplazium pyncocarpon

Goldies Woodfern ? - Dryopertis goldiana

Intermediate Woodfern? - Dryopteris intermedia

Interrupted Fern ? - Osmunda claytoniana

Lady Fern?

Marginal Woodfern ? Dryopteris marginalis 

Mountain Woodfern ? Dryopteris campyloptera

New York Fern ? - Thelypteris noveboracensis 

Northern Maidenhair Fern - Adiantum pedatum

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

Spinulose Wood Fern ? -  Dryopertis carthusiana

Virginia Chain Fern ? - Woodwardia virginica

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

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

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

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

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

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

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

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