Episode 7: Hypochondria and Bear's Head Teeth

After texting my twenty-eight-year-old son about my latest health issues, he texted back, “You’re a hypochondriac.”

I texted back, “I wish.”

Laura Hillenbrand, author of Seabiscuit and the more recent Unbroken, describes her battle with chronic fatigue syndrome in the New Yorker at http://www.cfids-cab.org/MESA/Hillenbrand.html.

I am eminently grateful that my health issues are not as debilitating as hers.

But there’s no question that I have morphed from a healthy, active person for more than half of her life to someone who is no longer at her best physically and, I’m afraid, quite often mentally as well.  I haven’t quite given up on the possibility of recuperating to the point of being as physically robust as others my age, and so far I’ve done a decent job adjusting to the need to write things down to remember them.  It’s the fatigue that is relentless.  I do still have good days, and I relish those.  I recognize them as they are happening … “Hey, I feel damned good right now.  I have some energy!  I can do some of the things I want to do!”

Unfortunately, in my ADHD fashion, I go in about seven different directions when I’m feeling well, so the overall gain is less than it should be.  Something that frustrates me even as it happens.

I’m not interested in hashing out the details of the latest diagnosis in my endless permutations of chronic disease, but just to give this episode some context, I’ll just say that the doc says I have “reactive airway disorder” or some such medspeak.  I’ve had a bad chest cough for the past five or six weeks.  It won’t go away, and it exhausts me.  Over this time, I’ve popped two “Z-Paks,” prepackaged week-long dosages of Azithromycin, a heavy-duty antibiotic, to no long-term avail, so my doctor just prescribed an inhaler, some Prednisone (a steroid that reduces inflammation and, by the way, made my mother psychotic when she took large doses to increase her white blood cells so she could take radiation treatments for her cancer), and another hardcore antibiotic. 

Tangentially, small-town weirdness is what happens when one lives and works in small towns.  Ours, with more than 20,000 residents, is not a small town exactly, yet anonymity does not exist in my particular orbit.  Medical privacy probably never existed in this town, but the advent of electronic health records is dangerous, in my opinion.  On Facebook not long ago, I read a post by someone who claimed to work as a volunteer in a local sheriff’s office.  This volunteer had access to electronic health records and said she spent her days looking up the psychiatric records of everyone she knew.   That, my friends, is downright scary.  Fact is, my EHR says I’m bipolar, all because of one incident one night that is what nightmares are made of.  But that’s for another episode. 

Anyway, back to the small-town weirdness thing--the person who walked into the examination room at my doctor’s office after knocking politely turned out not to be my internist, a women who has treated me since I was diagnosed with hypertension at the age of 36.  That, sports fans, was 16 years ago.  (Holy hell.  We do get old.)

Back to the impetus for this episode, the real issue here, which is the one of true illness versus hypochondria and, even worse, malingering.  After sixteen years since my first diagnosis with chronic disease, I have come to the conclusion that anyone who is physically ill in this country will be presumed to be malingering, unless that disease happens to be cancer or some other obviously traumatic diagnosis.  More “mild” ones, such as hypertension, diabetes, adrenal dysfunction, liver disease, chronic fatigue syndrome, fibromyalgia, Lyme’s disease, migraine, etc., etc., will not elicit the understanding or compassion of others.  Friends and loved ones will begin to think your fatigue and lack of energy is just laziness.  Nothing can be more aggravating and soul-diminishing—if one allows it.  I am working to fight against that.  I know what I am capable of, and I will not talk myself down when I can’t do what I want to do.  I will not accept the idea that I would prefer to lie comatose in my room than walking the woods on a glorious fall day.

The very worst thing about feeling ill on a regular basis is having to give up on things you want to do.  Oh, I haven’t given up entirely, but today is a case in point:  My latest mania is mushrooms.  I’ve discussed this in a previous post.  Unfortunately, because of this latest physical setback, I’ve been sleepier than usual—and that’s saying a lot.  I sleep A LOT as it is.  Lack of stamina was the first symptom I recognized when my life divided in 1996 from the healthy-before to the not-so-much-after.  But this bronchi-lung thing over the past six freakin’ weeks has kicked my ass.

I slept most of yesterday at my sweetie’s house, then lazed around, heated a can of chicken noodle soup, watched a little TV, and finally made my way over to my own place.  By then, the day was fading into night, but there was just enough twilight for me to finally check out a white mass of fungus on a dead tree that I had noticed from the French doors of my kitchen.  The tree was beyond the fence I’d amateurishly strung between trees and metal stakes so the dogs could roam somewhat free—the fence that Gretchen regularly breaches, though if caught in time the temptation of “Biscuit!” will bring her back before she takes off entirely.

The white mass is in the wound of a dying tree, most likely a sugar maple like the many others in the hardwood forest on the mountain slope behind my house.  Other species on the northeastern-facing slope include oak, linden (basswood), and ash, with black locust along the edges.  As soon as I got close, I knew I’d seen its likeness in my Audubon mushroom field guide.  The white shaggy mass, easily as big as a bear’s head, was, if I'm correct, a bear’s head tooth fungus, pictured regrettably blurrily below.

Bear's Head Tooth Mushroom

Bear's Head Tooth Mushroom

This species is supposed to be a choice edible when young.  Unfortunately, I didn't harvest it when I first saw it from my window about a month ago.  Now I could see that a smaller one has formed beneath it; perhaps it’s a bit fresher.  I may give it a try tomorrow.

I also collected a yellowish, slimy capped ‘shroom growing in that same wounded tree.  (I do worry about those woods—seems as if a lot of those trees are sick, many of them sporting a black sooty growth along the length of their trunks.)  I’ve had some trouble identifying this smaller, slimier, and nicely fragrant mushroom, but I’ve got it narrowed down to a couple.  Unfortunately, I don’t have a good picture of it, and all possibilities so far are inedible species, so it’s kind of a moot point.    

So what do these mushrooms have to do with my child, the flesh and blood of my loins, calling me a hypochondriac?

I turned in last night around 10:30 p.m., feeling quite bad—heavy, headachy, tired.  But as I’m wont to do, I started reading, thinking that would make me sleepy, but the next thing I knew the clock said 1:00, then 2:00.  Just one more page, one more chapter, I’d tell myself.  Then 5 a.m.  At that point, I forced myself to turn out the light and try to sleep, something that didn’t come for quite some time, as the chores I hadn’t done and the winter preparations the house still needed weighed heavily on my mind.  I woke a few times in the next thirteen hours to shuffle through the hallway to the bathroom, and to notice the bright sky through my bamboo blinds, and to listen to the fierce winds signaling the onslaught of winter.  (I don’t hate winter, but the extra work and expense involved in getting through mountain winters is beginning to wear on me.)

My property is excessively rocky—my house lies in the midst of a rockslide down a sort of leg of Savage Mountain that continues past my property--the rockslide, that is--and through my across-the-street neighbor’s as it reaches for the stream at the bottom of the ravine that cuts through the aforesaid leg. Or foot.  Whatever a mountain's appendage might be called.  This is why my basement will never be finished—not unless I figure out a way to waterproof a long-established water avenue of nature.  I’ll be lucky if the foundation isn’t washed away someday. 

Which, of course, is what I worry about as I’m lying in what feels to me a semi-catatonic state.  I have plans galore to waterproof my house, to finish the projects I began, such as the kitchen ceiling and the demolished wall between the kitchen and what used to be my bedroom, both of which I tore out in a frenzy of home rehabilitation.  I didn’t realize at that time that rebuilding would prove so much more difficult than demolition, particularly without funds to so much as purchase boards and screws, and the ceiling now remains striped with furring strips from which I’d pulled the ugly asbestos-looking tiles.  Unfortunately, just after ripping everything apart, I lost my job due to chronic illness (illegal, I know, but that's another post), and in the three years since I've not had the funds to pay someone to repair my handiwork.  

Alas, those dreams ended when I lost my job in 2008, a story that I’ve told before and will probably tell again. Actually, since it so eloquently illustrates my point that being chronically, somewhat mildly ill in America is synonymous to being a lazy malingerer who, for some strange psychological reason, prefers pretending to be too sick to doing something to actually doing that thing, this becomes a fine moment to explain my plight, and I will, in a moment.

My plan had been to rise early this morning, or day, rather.  “Early,” for me, is a relative term.  Generally, I avoid anything before 10 a.m.  On the weekends, 1-2 p.m. is early.  But I really just wanted two or three hours to walk in the woods and look for mushrooms and other interesting forms of fall life before night fell.  

I failed.  I did not fully awaken until 6:30 p.m.  That's PM, not AM--how many hours?  Behind the bamboo blinds, the sky’s light had dimmed, and I knew the mountainside was now cloaked in shadows. 

I am unhappy that I missed a sunny day in the woods, but I consoled myself somewhat by telling myself I may well have avoided getting crushed by a falling limb or tree.  A few years ago, the wind brought half a locust tree onto my house.  It landed on the roof above my bedroom, not quite crashing through into the room itself.  The other half of that tree still stands there, so while lying there in a semi-coma all day I wondered if the wind would bring that tree down on top of me.  I didn’t worry about it, particularly.  I’ve got a Norwegian Spruce well over 100 feet tall within 30 feet of my house, and another spruce of some kind towering 70 feet high  about 10 feet from my bedroom.  If I worried about trees falling, I would never sleep in that house.

One of the peculiarities of my fatigue is that my body clock tends to want to reverse itself.  Despite being tired, I lay awake most of last night researching medicinal plants.  At a book giveaway some time ago, I picked up Making Plant Medicine by Richo Cech.  I’d skimmed through it a few times, but a couple of nights ago I started reading it in earnest.  I was utterly charmed while being educated on making tinctures, teas, creams, and other forms of medicine with common weeds, and last night I continued this reading adventure.

The happiest discovery was mugwort.  This weed has been my nemesis since I began gardening.  It loves my yard, invading every bed I plant.  As an experiment, after noticing the similarity of its leaves and those of the Shasta daisies I once bought, I let it grow to adulthood, but I soon learned that its florescence is less than impressive, nothing like a daisy's, despite its classification in the compositae family.  The weed is easy to pull, but its runners insidiously weave through long stretches of soil, springing up fresh shoots of its multi-divided, not unattractive--that's me, not a field guide, because it was what I noticed when I finally took the time to look at one closely--leaves everywhere it runs.  I've stripped roots longer than a foot from the ground, not getting to their ends.  Over the years, I've come to appreciate the leaves and flowers of many "weeds" aka herbs in my yard, but this one is so ubiquitous and invasive that I've fought it with every vengeance other than toxic chemicals, which I hope never to resort to.

At last, thanks to Horizon Herbs and Richo Cech, I now recognize the plant as valuable for a number of purposes, not the least of these in shamanic and religious rites.  It is supposed to ward away evil spirits and induce vivid dreams—not all of them pleasant--but that is probably because some users are not ready for its powers, or at least those who believe in such things would probably say that.  As for me, I'm not passing judgment until I try it myself. It is also used with sage for smudging, as an energy booster by burning acupuncture points on the body, and is apparently a well-loved ingredient in Japanese rice cakes.  Who knew?

This discovery meshes well with my recent identification of agaris muscaria var. guessowii, now growing prolifically in my yard.  That plant, too—the American version of the classic red-and-white spotted toadstool—is a known hallucinogen, inducing deep sleep and visions.  Recent scholarship suggests this fungus is “Soma,” the ritualistic plant described in ancient Vedic texts. Or perhaps, Soma is mugwort.  Given my strange sleep issues, these wildings' relationship to sleep is just one more happy coincidence in a world with no coincidences, according to Karl Jung.

Since visiting the West Virginia mountains every summer between the ages of eight and eighteen, my dream has been to live in the Appalachian woodlands, and my happiest moments on planet earth these days are spent in those woods, discovering their gifts and ways to make good use of them.

In ten days, I go to bankruptcy court.  I risk losing my cottage and my little patch of woods.  I am bankrupt because my university fired me when I became too sick to teach my college English classes.  Just before the fall 2008 semester began, I went to the emergency room because of chest pain and difficulty breathing.  I was admitted after doctors determined I was in heart failure.  I spent the next week in the hospital undergoing two invasive heart procedures and a painful muscle test (my muscles had been twitching all over my body due to lack of oxygen), by which cardiologists determined my heart and muscles were structurally and mechanically sound.  But when my usually high blood pressure dropped to 78/48, a dangerously low number, shortly after the painful electrical muscle test, the team of physicians decided the culprit might well be the four hypertension medications I was then taking.  Perhaps, just perhaps, the dosage was too strong.  Why this hadn't occurred to them before they subjected me to the risk, pain, and expense of those procedures is beyond you and me.

I had tried to explain to these eminent health professionals that the cause of my hypertension had been verified by researchers at the National Institutes of Health that past fall.  My adrenal glands secrete too much aldosterone, a hormone that balances sodium and potassium in the body.  Too much aldosterone equals too much sodium, and high blood pressure results.  NIH had prescribed an aldosterone blocker, also classified as a hypertension drug and one of the four I was then taking, but because my pressure didn’t immediately drop, they recommended I stay on the other meds until things began to even out.  Although in my confused state of mind over-medication did not occur to me, I did think it important that my attending physicians understand my recent history of being treated for an endocrine disorder.

But no one listened to me.  My boyfriend brought in a copy of the NIH report, and I gave it to the attending nurse, explaining its importance in my care.  She took it, then brought it back and handed it to me without the slightest interest.  “The machine jammed, so I got most of it and put it in your file.”   Her message was that I'd overstepped myself, and that her job did not involve doing my photocopying for me, and that I was just a patient and couldn't possibly understand what might be important in my own medical case.  I guess I should have handed the report directly to the doctor, but once I was admitted to the hospital my regular doctor no longer saw me.  I saw the hospital cardiologists, but they seemed to change by the day.  Nobody, not even the hospital pharmacist, thought that perhaps four hypertension medications might be slowing down my heart and causing my distress.

Of course, that dawned on them when my pressure plunged.  Afterwards, a friend in town told me her ex-husband had just died after complaining he wasn't feeling well and going into his room to lie down.  He died of heart failure, having been over-medicated.  There but for the grace of God, etc.  Now the docs took me off all four medications.  Yet instead of waiting until my condition had stabilized, they sent me home before the systolic, the top number that is supposed to be 120, had yet even reached 100.   

Meanwhile, I’d been in touch with my division chair each day, letting him know what was happening to me and telling him I hoped things would get better and I'd be back to teach that semester.  My doctor sent me home on a Wednesday and told me to rest and not to drive for two days.  Our division had a regular meeting that Friday afternoon, and I told my chair I’d try to make it.  I wanted to stay on top of what was happening with my classes, which he’d been covering, and I hoped to be back to work the following Monday.

I was eager to get back to work and put the whole ugly episode behind me, though I was still feeling confused and sort of only half awake most of the time.  I emailed my chair that I'd try to come to the meeting Friday afternoon at 3--that was nearly 48 hours, and maybe I could get someone to drive me anyway.  I thought I was demonstrating my good faith by at least trying to make the meeting, even though I was still so sick.

This is starting to sound like he said, she said.  

Hey, this is ancient history.  I didn't sue anyone.  I even dropped the grievance process after one of three chances--too much paperwork and stress when I was too sick to deal with either.  So hopefully I'm not turning you off with sour grapes.  My intention really is to warn those of you out there sitting smug in a job you love and have prepared for most of your adult life can be taken away from you in an instant for one reason alone:  you get sick.

So, the story is more important than my pitiful little life-ha.  It's a warning.  A call in the dark to the rest of you out there who believe it could not happen to YOU ....

Not too long after I sent my email, my chair wrote back. No doubt he had no idea of the fragile state of my health and mental state at that time; otherwise, I know he would not have told me that the dean had made a snide remark about my being able to attend a meeting but not able to teach.

I don't really need this aside, but the insult still rankles.  The message was clear:  the dean thought I was malingering.  He didn't believe me.

And in my fragile mental state, I took to the keyboard and sent an incoherent, practically unreadable email in which I told him he'd been out of the classroom too long if he thought sitting in a meeting equaled the stress of teaching classes.

Well, before too long things devolved, if you can imagine.  I was given the choice of resigning or being terminated, and I chose the latter. Good thing I did so I could collect unemployment benefits while being out of work for the next nine months, as this happened just after the crash of 2008 and in an area where jobs are always scarce, but my reason was pride.  I'd done nothing wrong; I'd simply gotten sick.

But, you see, I'd also inconvenienced the dean, a man who'd hired me but who had been less than sympathetic when I told him I was sick, though the number of times I missed a day of class in those years was definitely within the reasonable range. Little to know, though--I'd chosen to work for a state university system, the ONLY one in the country, that did not have sick leave or paid short-term disability benefits for its full-time, benefits eligible faculty members.

And the dean was mad at me--no doubt about that.  I do not think I was insubordinate, and no one accused me of that. But I do believe that what happened next was retribution, which is against the EEOC every bit as much as sexual harassment or other illegal behaviors at work.

I don't know if anything could have devastated me more.  I'd always been the "star" wherever I'd worked, yet I was now being treated as if I were somehow faking my condition for what kind of gain I have no idea.

A year or so before becoming sick with primary aldosteronism, I learned I had hepatitis c.  It only happened because the students in my high school early-start English class—kids that earned college credit while I taught them both their high school English and college English 101 at their school—convinced me to give blood to the Red Cross.  Shortly afterwards, I received a thick envelope and, opening it with a sinking stomach, learned I had hepatitis C.  I was grateful it wasn’t AIDS, but I soon learned Hep-C was no picnic either.

At that time, Naomi Judd, a woman who had become a popular country singer with her daughter, quit the music business because of her diagnosis with Hepatitis C.  She said she was facing the possibility of her own death.

That diagnosis was a shock, but I didn't think it would stop me.  It came while I was still battling my hypertension and well before my primary aldosteronism had been diagnosed, but at the time I was still sure that, once medical science figured out what was going on, I'd be as fresh and new as ever.

I told the dean of my Hep C diagosis shortly after learning of it.  If I'd expected the least sympathy, I didn't get it.  He informed me that our university did not provide sick leave or paid short-term disability to faculty due to illness.  From that point on, I worried every time I had to take off an afternoon to go to a doctor's appointment.  The dean also said to me, "Yeah, I'll bet my brother has hepatitis C."

And that was my first encounter with the stigma of that disease.  The implication, for me, was that his brother was a drug addict, one of the stereotypes of hepatitis C patients.  To this day, I believe the dean thought I was a drug addict, and he suspected my hospitalization to be due to that rather than a "real" illness.

Because I was so sick, I could hardly advocate for myself.   I sent the Medical Management office the documentation they required, but none of it filled them in on the details of my illness or treatment.  

But I never imagined I'd be fired for being sick. (Their official reason was "negligence"--I had failed to ask for more time off in advance, as required by the letter granting my previous semester's partial leave of absence; I inconvenienced the dean, you see, by so thoughtlessly going to the hospital in an emergency, life-or-death situation without first sending of a formal letter asking permission to do so.) I was just determined to get better, if I could.  I also knew that things could go the other way.  After being told by the hospital cardiologist I was in heart failure and had probably had two mild heart attacks, I began mentally dividing up my property for my heirs.  Meaning, which kid would get which piece of sentimentality, since I own almost nothing of value.

After my father died of a heart attack in the shower one morning in 1985, when he was almost seventy and I was twenty-five, I spent a long time depressed, thinking about how swiftly the years my father and I had shared on this planet had flashed by, how quickly his life, the history of which I knew only a little about, had passed.   How fast, how cruelly and quickly ended life seemed.  I understood then that the very same thing would happen to me.  I would cease to exist as a specific personality on this planet, and it would happen in what ultimately would feel like a mere moment.  I was living on borrowed time.

A few years later, in 1989, my mother died of pancreatic cancer, only confirming to me the tenuousness of life on this planet.  Their deaths made me lonely and sad, but I was determined to do my folks proud.  With the money I inherited from the sale of their house and investments, I moved to the mountains and enrolled as a thirty-year-old freshman English major, determined someday to teach.  

I'd made some bad choices in life, and I wanted to make some good ones.  My anxiety had scared me away from teaching, but I knew that was where my heart and soul belonged.  Since I didn't have the nerve to do it for myself, I did it for my parents.  

All these years, I've missed my parents every single day.  For many years, I wondered whether I’d see them again, touch them, talk with them.  I wanted to know what happened after death, and what kind of afterlife there might be.  But I don’t think about that so much anymore.  My parents are so much a part of me, I no longer feel separated from them.  And what is more important to me now is figuring out what to do in the here and now, before it's all over in the blink of an eye.  That, I think, is what they would want as well.  

I'm not overly ambitious.  I’ve just wanted to live a good life.  I’ve just wanted to be kind and good and unselfish, things I know I've failed at.  I've just wanted to find my soul mate and be a good mom and read good literature and live in the mountains and enjoy the earth and its creatures and plants and mushrooms and all good feelings and music and poetry.  And so much of that is still within my reach, every day.  And that is what frustrates about feeling ill.  I have two wonderful sons, a loving man and his three sweet kids as “bonus” children, two adorable dogs, and a little mountain cottage in need of some TLC.  I have so many plans for my house and so many ideas about incorporating the natural environment I’m blessed to intimately know into some way of living that’s more suited to my personality and abilities than what I currently do.

Don’t get me wrong—I’m tremendously fortunate to have the job I have.  I love being able to help practitioners and everyday persons find information about health care.  I am excited to be able to write grant proposals that lead to very real programs that help the disadvantaged in this country to have greater access to health care.

Yet I wish I had the energy to stroll through my woods every day, and to research mushrooms and plants every day, and to try making tinctures and oils and soaps and candles with the bounty on my land, and to grow, cook, and eat only foods good for my body, and to feel well enough to tackle the big jobs around the house, and to wake at a decent time in the morning and get to work at a decent time and come home early enough to enjoy the yard and the dogs and share good times with my loved ones while feeling whole and healthy.  And I wish those closest to me understood those desires and how shackled I so often feel by forces outside my control.

As I told my son, “I wish.”