My Little Lioness

Oh, the places I’ve been!  And the faces I’ve seen! (and if you haven’t visited our Facebook group, Faces of Mental Illness, why then, come on over and check us out…leave a comment, or come out with a photo or short video of yourself.  Or just hang out, no pressure.)

I’ve been ambling and camping around the East Coast, hoping to eventually get Out West, but things keep happening.

For instance, at this moment I’m camping in a dear friend’s driveway in Rochester, NY.  She’s a wonderful healer who’s helped me many times over the years.  She’s also my teacher.  Her husband is a brilliant inventor.  She’s Chinese, he’s Polish, and we all love each other dearly, so I am having a lovely time.

Yesterday my healer was giving me an energy treatment, and I was lying face down on her treatment table.  Little Noga, my not-quite-13 lb. Lhasa Apso, was looking on anxiously.  Then she started pawing at my healer’s leg.  Then, when she didn’t stop treating me, Noga levitated up and over the 3 foot high treatment table, landed squarely on my back. and lay down, covering as much of me as her little body could reach!  I believe my little lioness would lay down her life for me.  I cannot imagine a better traveling companion….

Although she does enjoy life's comforts, Noga considers me her property, to be protected at any cost

Although she does enjoy life’s comforts, Noga considers me her property, to be protected at any cost

Friends Don’t Let Friends Embalm

Laura P. Schulman, MD, MA:

While I am out of commission, suffering through a bladder infection that won’t go away despite 3 different antibiotics, gallons of pure cranberry juice that require unbelievable quantities of stevia to make it drinkable, pills that make you pee fluorescent orange, and pain that better let up soon or back to the doctor I go…. May as well have a good larf, right? Oh, and I am fortunate to be camping almost around the corner from my doctor! Yay! It doesn’t get much better, right?👹

Originally posted on Problems With Infinity:

Hey there little Sarah! Watcha doing?

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It looks like something!  Wait.. where are you going?

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Are you hiding?  From me??  Why???

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Awww, come on out cutie pie!  I won’t judge you!

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As long as you don’t do anything too weird that will mess up my future as a normal high functioning adult…

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Ok, ok, geeze!  So… is that a pharaoh you’ve got there?

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Woah, that’s great!  …and strangely normal-ish!  Hehehehe normal intellectually stimulating adulthood here I come!

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Hehe, I think you mean mummies *so cute!*  Why don’t you invite a friend over too play?  Eeeee this could be my ticket to normal social development!!!

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Oh no.. I know that face…

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What have I gotten us into???

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Okay… this is okay I think…

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Wait… oh no… don’t start…

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This is going to be bad…

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No, no, no, no, no….please no…

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Please…please… stop this insanity, before it’s too late…

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Bad, bad, bad…

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Guns and Pots

I’ve been having a bit of a rough time with a urinary tract infection that just won’t go away.  But hey, at the doctor today the scale said I’m three pounds lighter!  Look what being sick can do for you!  Not funny.

After I got back from a bracing visit to my harried-looking but actually very sympathetic GP, I scurried off to the sheriff’s department to get the final phase of my handgun concealed carry permit done: fingerprinting, filling in yet another questionnaire…

Before we go further with this, I need to address that group of you who is sitting there with their jaws on their knees going “wha…you mean you…she…”

Yes.  I own handguns.  Two of them.  One of them, a Ruger target-shooting competition pistol, I have had for years.  I love to shoot targets.  It’s fun.

I just bought the other one last week.  I have had my eye on this pistol for a long time.  It’s a Smith and Wesson .38, model name LadySmith.  I know, I know, it must be the devil that causes me to get all hot and bothered over a gun.

But how can I possibly describe the smooth burl of her grip, so perfect in my hand, as if made expressly for me; the smooth way she rolls out for loading and unloading; the coy bluing of her short barrel; and the prospect of making some really big holes in the paper targets, instead of the little tiny holes my Ruger .22 caliber makes, so I have to go up and squint at the target to see where the holes are, after shooting off a clip?

Well.  There I was, with a form in front of me that asks me have I been convicted of this, am I a fugitive from that, am I mentally ill?

Hm.  I thought about that one for a while, and then checked “No.”

That is because I have been stable on medicines for over five years, and if you ask me, I believe that I am not mentally ill.  I take medicines that ensure my mental health, and they are a part of why my mental health is excellent today.

Other factors is that I meditate.  A lot.  And it grounds me, and with the help of the medicines I can find a still point.  Things bother me, of course, but things bother everybody.

Next thing you know, I get body-slammed.

“Just write the name of your doctor right here.”

“My doctor?  Why?”

“Oh, it’s a formality.  We have to check whether you are mentally ill.”

“Oh, okay,” I chirp cheerfully, writing the name of the doc I just saw and hoping he will be cool and keep it between the ditches.

Damn.  If it isn’t the “honesty tax” (“Oh, you have DSM diagnoses?  Sorry, no laundry today”), it might be the DIS-honesty tax, which I can see would be a lot lot worse, having to do with lawyers and unspeakable things and places.

After that, I realized I had a choice of either flipping out and becoming totally paranoid and having a bad day and maybe many bad days and then a vicious cycle and I get sick again; or, I could take the other road and have lunch.

I hadn’t eaten anything besides tortilla chips and cheese for three days, because I have felt too lousy to have an appetite let alone cook.

So I made a pot of ramen noodles with all kinds of good-for-you stuff in it.

Listen: I’ve been living in this camper for going on two months now, and layers of civilization have peeled off me like a snake shedding its skin.  In other words, I have become a Neanderthal woman.

I’m sitting in the passenger’s side captain’s chair eating ramen noodles out of the pot (why dirty a bowl?) when a knock comes at my half-open side door.

“JEEZEZ!!!”  I thought for sure they were right there, brandishing the warrant, handcuffs go on, click, and off to the new county lockup.

“I’m sorry to scare you,” said my mom, brandishing a tin of cookies with a card taped to it.  “I wanted to wish you a good journey.”  She hands me the tin.  “They’re gluten free, every last one of them!”  She had on her beatific high beams.  Not to be trusted, but you have to roll with it.

“Oh thank you!  That’s very thoughtful!”  (Holy shit, am I relieved, for the moment anyway.

I see her glance inside the RV.  Piles of laundry cover most of it.  It’s been so humid here, everything has gotten musty and I must wash it before it gets genuinely moldy.  I try to explain that to her.  She looks puzzled.  She’s lived here for over 40 years, and she’s used to everything being damp and smelling musty.

She knows not to touch me.  I feel a pang of wistfulness, having a mother who feels like acid or hot lead to the touch.

I notice that she has been spiffing herself up a lot these days.  Better haircut, makeup, a spring in her step.  Widowhood has done her good.  Everybody’s different, I always say.

So she waved kind of sadly, and left.  I guess she might have been wistful too…

And then I looked down and noticed my half-eaten lunch, still in the pot I cooked it in, looking and smelling inviting.  I ate it all up.  It was only after a few hours that it sunk into my head:

Dear God, my mother would rather be drawn and quartered than to eat out of the pot.  It must have really distressed her, stuck her as odd, pointed out to her that she knew I was odd but not THIS odd…..

Then I thanked the Lord that this home on wheels gives me the freedom to be exactly who I am.

Food Insecurity and….Foodies?

Look, I’m not out to harsh anybody’s Foodie buzz, but I gotta say that the first time I heard the relatively newly-coined term, “Foodie,” was from someone who had lost his multi-million-dollar mansion in Palm Springs in the financial crash.  He ended up being my neighbor in Loafer’s Glory, North Carolina.

I made his acquaintance because of the siren scent of steak-au-poivre wafting from his backyard grill.

If your house was on fire (and I fervently hope it never is!), what would you rush to save?  The contents of your safe?  Family photos (BTW, this takes #1 on most surveys)?  Your pets?  Your children?

How about your ultra-heavy-duty-gourmet backyard grill?

Uh-huh.

This guy, who is incredibly creative but not very bright, forgot to make a few payments on his gigantic mortgage.  He came home from his self-owned business one day to find other people moving into his house.

He also found his assets frozen, so hiring a lawyer was not on the table.

He grabbed his grill, threw it in the back of the minivan that he bought with the fire-sale proceeds of his Mercedes, and fled for the hills of Western North Carolina, where a former client had a house for rent cheap.

And what was he grilling on his precious grill?  Tube steaks?  Nope.  Porterhouse.  I priced them the other day, just for fun, as I was perusing the non-Kosher meat case.  Over $20 a pound, for a Porterhouse steak.  Mind you, these were the grass-fed kind, but that was the only kind this guy would eat.

His menu was worthy of any fine restaurant.  I won’t go into detail because I am feeling lousy today, on antibiotics, and my stomach really isn’t into food at all, but since I have to write this article I will give you the gist of the thing.

I met my first Foodie on my first date with my first husband.

We were both medical students.  We both worked, and had comparable poverty-level incomes.  Let’s start there.

I won’t go into how we met.  That is fodder for another post.  I won’t even go into the fact that he had a steady girlfriend at the time, who wasn’t me.  I found out about her about the time we proposed moving in together.

The important part is that he asked me to come by his place and pick him up for our theatre date.

As I mounted the stairs to his second-floor apartment, I began to salivate.  Something delicious was cooking.  My stomach growled.  I hadn’t thought about eating before this date.  I was too nervous.  And something had happened in the anatomy lab that had put me off food for quite a while.

I wondered who could be cooking this mouth-watering meal.

Meal.  I hadn’t heard that word in so long, I had forgotten all about it.  The word, and the meal, too.

At that point in time, I had never had an actual meal in a restaurant except for a few memorable special occasions.  My idea of restaurant fare was a cup of tomato soup and a grilled cheese sandwich, if I was feeling flush; or just the soup, if I wasn’t.  Or more likely, a cup of coffee and a donut.  But an actual meal, with a salad followed by a main course, and maybe dessert?

Less than ten times in my life, certainly.

As I approached my new date’s door the aromas intensified to knee-weakening levels.  I knocked.

The sound of a chair scraping back, footsteps, and the door opened.  He was wiping his mouth with a cloth napkin.

“Come in, welcome, I was just finishing up dinner.”

Veal in white wine sauce, green beans–the skinny, tender rich-people kind, not the hefty, tough Kentucky Wonder pole beans I was raised on–little potatoes drowning in butter and rosemary….and he never offered me a bite, let alone a plate.  I was dazzled and puzzled all at the same time.  And hoping the noises emanating from my now convulsing stomach would not give me away.

Wow.  A man who cooked entire gourmet meals, just for himself!  (And didn’t invite his new date to partake…but having been raised to never ask for anything, that part escaped me for a few years, like, ten.)

I had just made the acquaintance of a Foodie.

The term hadn’t been coined yet, but I noticed after a while that his priorities differed from mine in certain key ways.

For instance, on our first anniversary we made Duck With Forty Cloves of Garlic, a recipe that involved hours of tedium to prepare and mere minutes to eat.  The menu was extensive.  And since it was, after all, our first anniversary, it included a moderately expensive bottle of champaigne.

The air was filled with the electric excitement of anticipation.  I couldn’t wait for the food to be over and the real meal to begin–and end–in the bedroom.

As it turned out, he enjoyed his meal at the table so much, and ate so much duck, and drank so much champagne, that he literally fell asleep with his face in his plate.

I’m sure there are other men in this world who prefer food over sex, but I have never personally met another one.

Here in West Bumfuck, North Carolina (a step up from Loafer’s Glory), there are so many hungry people that the food assistance programs are stretched to their limits to try to keep the most vulnerable populations–children, pregnant women, and the elderly–from outright starving.

The people of these mountains have been proudly hard-working, and self-reliant, for almost three centuries.  When they first emigrated from England, Ireland, Scotland, and Wales in the 18th Century, they disappeared into the hollows and coves.  They learned to grow corn, sorghum, beans, greens, chickens, pigs, milk-cows, and children.  The latter grew up relatively healthy except for occasional waves of measles, diphtheria, whooping cough, smallpox–giving rise to whole “baby sections” of the old cemeteries.

Things that could not be grown or made–gunpowder, saltpeter for preserving pig meat, salt, pepper, and tobacco–was got by twice-or-thrice yearly excursions over the mountain trails to the settled towns of Tennessee, leading mules laden with sorghum molasses, sourwood honey, dried beans, hams, and other tradable products, work of their hands and sweat of their brows.  And thus life continued until the coming of the roads in the early-to-mid-20th century.

With the roads came the mills and the mines, and with the new days of wages the “furriners” introduced the mountaineers to things that suddenly became coveted necessities–like ready-made clothing and shoes, printed calico fabric instead of natural-dyed homespun, patent medicines instead of the herbal remedies passed down the generations of settlers, and general stores full of all sorts of things that only people with paying jobs could afford.

But the paying jobs weren’t nine-to-five.  They were more like five-to-nine.  And there wasn’t time to raise a big garden and take care of things on the farm.  And the children had to go to school instead of minding the livestock.  So the family farm, and all its bounty, foundered in the wake of sudden prosperity.

Then came the Tobacco Allotment system.  Every family who owned land was guaranteed, by the US government, that if they planted a certain proportion of their land in tobacco, it would be sold at a predetermined price at the tobacco markets in Raleigh, Salem, and Winston, North Carolina.  Now you know where the cigarette names came from.

Tobacco became the chief sustaining cash crop for those who still clung to the old ways–raising a big garden, canning, preserving, “stirring off” a batch of apple butter in the fall–and tending their tobacco allotments all summer.  It was a poisonous job, not only because of the nicotine they absorbed through their skin (and mouths, and lungs, as they became addicted to the plentiful supply), but also because the pesticides required to fend off diseases peculiar to tobacco are particularly poisonous to people as well as to bugs.

I started coming to this mountain country in the 1970’s, seeking out the old ‘uns, the men and women already up in their 80’s, who remembered and still played the music of the pre-Bluegrass era.  I will put some of mine on one of these blogs sooner or later.

My parents eventually settled here, so I had more reasons to come down from the North during breaks.  The first thing I noticed, driving down from the Midwest, was the disappearance of the tobacco fields.  Then the textile mills stood empty with their windows gaping dark mouths.  Then the feldspar mines started laying off people, especially the mid-level engineers.

Where did it all go?

China.

In the place of the jobs and tobacco came first marijuana, a cash crop that grew well and fed families.  Then came the spotter planes and helicopters droning at night, looking for the characteristic heat signature of the marijuana patches, hidden in the hollers, just as its predecessor, the moonshine still, had been.  The crops were sprayed with Agent Orange and their growers, if caught, were hauled off to fill the penitentiaries, leaving their families in poverty and want once again.

Now we’ve got a new cash crop: meth.  It’s easy to make, I hear, and easier to sell.  I hear it brings in enough money to keep a family out of poverty, but there’s a hitch: the meth makers get hooked on their own product.  And the only thing a meth addict wants is more meth.  They will do anything for it, including prostituting their own children.  Including taking the food out of their children’s mouths.

See, the school teachers here noticed that more and more children were coming to school haggard, skinny, dirty, wretched…and their test scores were plummeting.  They were hungry.  They couldn’t learn.

They didn’t have the dollar it now costs for a school lunch, or the fifty cents for school breakfast.

Their parents were trading their food stamps for materials to make meth, and they weren’t hungry because meth takes away your appetite.  So there was no food in the house, and the parents didn’t care.

The community wanted to do something to help these children, so they started the “Backpack Program.”

Each Friday afternoon, the children get their school backpacks (donated, of course) stuffed full of nutritious food, to tide them over for the weekend.  These kids learn pretty quickly how to hide the food, even though they know it will buy them a beating, because otherwise their parents will trade the food for meth.  But at least the kids get to eat, even if they do come to school on what’s called “Black-and-Blue Monday.”

I didn’t really intend to go off on this tangent about the community where I currently live and can’t wait to leave, but there you go.  It’s where I live, and it’s what I see.  I don’t need to read USA Today to get an eyeful of the hunger situation.

According to the US Department of Agriculture, about 15% of Americans are “food insecure,” which literally means they don’t know where their next meal is coming from.

As a pediatrician practicing in this community, I have known whole families who subsisted on dry cereal, the sugary kind you can get in large bags in salvage food stores.  Without the milk, because milk was beyond their reach.  Not even the powdered kind that I grew up on, the watery blue lumpy liquid that I despised and was forced to drink, for my own good.

Lacking the most basic nutrients, the mothers were anemic.  The children were anemic.  The fathers worked two or three low-paying jobs, and were hollow-eyed and anemic.

So here we sit, a country that produces enough food to feed the entire world several times over every year–and one in six people are starving.

But not the Foodies.

Foodies, I have not written this article for the purpose of dumping on you, shaming you, or making you feel bad. You’ve earned your right to enjoy what you enjoy. It’s not like you’re harming anybody or taking food out of anybody’s mouth.

I’ve written it to highlight the truly unbelievable dichotomy between the haves and have-nots that is developing into something resembling a Dickens novel: “Please, Sir, may I have a little more?”

What would happen if, for every Porterhouse we grilled, we put aside 10% of the cost of the meat, to donate to a food assistance program?

How about doing like the religious Jews I lived with in Israel, who fasted one day a week and gave the money they would have spent on food for that day to one of the many food kitchens?  If that’s too radical, why not just donate the equivalent of the money you spend on what you eat for one day each week?

Foodies, and everybody else–when you’re in the grocery store, why not pick up a few cans of vegetables to bring to your local food bank, a bag or two of dried beans, some rice, dried potatoes–staples that will keep and not go bad–a few cans of canned chicken, Pork-n-Beans, stuff that you would probably never eat, but would fill some child’s hungry belly with protein and vitamins so they can grow and their brains can grow and learn and maybe even go to college and get a job and become…Foodies?

10 Huge Misconceptions About Emotional Child Abuse

Originally posted on The Invisible Scar:

[via Neal Sanche] [via Neal Sanche] “How could you have been abused?” a grossly misinformed person in an adult survivor’s life may say. “You had a roof over your head, food in your belly, clothes, and no one ever hit you!”

But as every adult survivor of emotional child abuse knows, the essentials—good attention, unconditional love, and emotional support—were missing.

Unfortunately, however, many misconceptions about emotional child abuse abound. Here’s a look at some of the biggest ones.

Misconception #1: Emotional abuse is another word for verbal abuse

Fact:Emotional abuse includes verbal abuse, non-verbal abuse, and non-physical forms of abuse.

“Child abuse is more than bruises or broken bones,” state Melinda Smith, M.D., and Jeanne Segal, Ph.D, in a HelpGuide article. “While physical abuse is shocking due to the scars it leaves, not all child abuse is as obvious. Ignoring children’s needs, putting them in unsupervised, dangerous situations, or making…

View original 2,072 more words

Story Construct Dialog Mind

Yesterday I went to my mother’s–formerly my parents’, but since my father’s death she has erased every trace of him, except the works of art that she either likes or keeps for their value, I don’t know which–to take a shower.  I avoid going there now, if she is at home.  There is always some kind of unpleasantness, because she resents the fact that I avoid her.

On Thursday she had forwarded me an email from a former student of my father’s.  It turns out that unbeknownst to me, the professional organization of ceramic artists of which he was a founding member had, at their annual meeting not long ago, given a touching memorial presentation dedicated to my father’s life.

The email contained a series of photos of the memorial, with a transcript of the speech.

I was flabbergasted that I had not been invited.  I would have turned myself into a pretzel to get there.

So I asked my mother why we had not been invited.

“Your memory!  Your memory is so terrible!” she shouted.  This has become a refrain that I hear every time she forgets to tell me something.  “My memory.”  Always “My memory.”

I confronted her.  I told her she was gaslighting me, trying to pass off anything she hadn’t told me as “my memory,” so that hopefully (her hope) I would believe that it was in fact “my memory,” that I am “losing it,” that the only truth is her truth and that I am a helpless, powerless imbecile with a bad memory.

I suggested that perhaps this was her story about me, and it might not be entirely accurate.  This sent her off on a tirade about how she and my father had always given me everything, etc.;  which somehow did not seem to be connected with my memory, but with a memory of her own.  And I know which one.

So I asked her why she thought I had left home at the age of 16.

My purpose was not to drag out old arguments, but to engage in meaningful dialogue which might lead to a discussion of how memory works, and how we sometimes make constructs out of our memories, especially painful ones, or ones we’d rather forget.

“Because we wouldn’t let you smoke pot in your room!  And every time I took you to buy clothes and nothing fit (because I was a bit chubby at puberty), you wouldn’t get anything until you lost weight!”

I don’t know what my weight had to do with my running away, since she never noticed I had become anorexic as a result of her calling me “Fat Ass” and teasing me about needing a girdle, but that is another story.  And the pot–frankly, mother, I didn’t give a damn whether she did or did not approve, although I dreaded my father’s lectures on the inevitable downfall of the Pothead.  As for her explosions of expletives, they were just more of the same.

Stories.

We all have stories, especially those crafted by memories of childhood events: “I was up in the tree and this boy pushed me out and I broke my arm.”  So every time this boy’s memory comes up, so does the story about the episode of the tree.  That is a normal story, filed away in our mind, solid in our neural net.

And then there are constructs, where memories trigger not only a picture of what happened, but also a fixed theory of why they happened.  These are often accompanied by some sort of positive or negative judgement:

“Oh, So-And-So.  She was an out-of-control drunk.  She used to get pissing drunk and slash her husband’s paintings with a knife.  That’s why he left her, you know.”

I know that if I mention So-And-So, or her husband, or even their children, I will get exactly the very same barrage quoted above, verbatim, as if from a factory package, from episode to episode.

Likewise if I try to engage in dialogue about events of my childhood, I am shouted down by her yelling me her constructs.  If I ask permission to add my own perception, my childhood neural memory snapshot of what happened, I am scolded that that is intrinsically not true.  Only her construct is true, and my story has no truth in it, and is of no value.  It is only made up in defiance of authority.

She often asks me why I never tell her anything.  So this time I venture out on a limb and say, “If you want to know why I never tell you anything, this is why.”

“Why?  Because I’m telling you the truth and you don’t want to hear it?” She challenges, in a childish “nah-nah-na-boo-boo” voice.

“Because,” I try to keep my voice even and fail, end up shouting, “Because every time I try to share something with you it gets thrown right back in my face.”  I didn’t start crying.

“That is not true,” she counters, icy voice.

“It is true.  Next time it happens I will point it out.”  Psychology 101.

“You just do that!”  Conversation over.  If you can call that a conversation.

I change the subject.  She is angry about that.  Fuck her.

I engage her in a project that needs doing.  It takes up several hours.  Then, at last, I spend a blissful half hour in the shower, grateful for the new water well–previously it was spring water and one had to take 5 minute showers–and the on-demand hot water heater.

Refreshed and not caring, I descended the spiral staircase into the lower living space.  She was waiting for me.

“You know,” she said sheepishly, “the reason I didn’t tell you about the memorial is that the organization expected us to pay our own way, including the $500, $600 admission fee.”

“Oh,” I said, ignoring the fact that my memory had just been restored, “That’s horrible!  What nerve!  I can’t believe they would do such a thing!”

As I gathered my things and exited, she looked at me wistfully and said, “Good Shabbos.”  It was Friday night.  When Dad was alive, I always made them dinner on Friday nights.  I tried to do it a couple of times with just my mother, but found it too awkward, since there was nothing to say.  So I stopped.

“Oh,” I lied.  “I thought it was Thursday.  Guess I lost a day.  Good Shabbos to you!”

I got in my car and drove back to my little house on wheels, tears burning my vision.

Mind Room

Laura P. Schulman, MD, MA:

One of the most touching and thought provoking poems I have read and meditated in a long time. Please leave comments on Sheldon’s original post, thanks.

Originally posted on Sheldon Kleeman:

It isn’t easy living

in a one

room house

Where all your eyes

are upon

my walls

Keeping all

my toes

in check

What terrible

twist of fate

To have this

clock of eyes

Instead of there

being these

hands of time

But still in all

there mite

be some

Who want

to come

and see

where ………

A mind that

seldom moves

I’ve collected

to much

thought

instead of

rooms to live

So if you come

be sure

not to step

There isn’t

room to spare

or even

a spot

For all has

been taken over

with my

over sized

crowded

Mind

View original

Where Have I Been?

That’s a good question.
I mean, that’s a REALLY good question.

See, I went to Michigan to pick up my little RV, whose name is Jenny–like a female mule, you know–and proudly took possession of her on March the 4th.

My life changed immediately upon climbing up into her new-smelling, spiffy cab, and trundling off into the not-quite-wilderness, as I spent my first night parked under the glaring lights of a friendly Wal-Mart.

They had every right to be friendly, as I spent hundreds of dollars provisioning for what was to become one of the most liberating, exhilarating months of my life.

I did not open my computer even once.

I did not check my email.

I did stop at my friend Jan Bloom’s, in Paw Paw, Michigan, and commissioned a totally custom-built tenor guitar.  Jan is a crackerjack luthier, and a very much adored pain in the ass.

Then I headed off the beaten path and into some wild and wonderful adventures.  Pictures to follow.

Now I am boondocking in my own driveway.  (“Boondocking” is RV lingo for camping without an official campsite.)  I tried to dump the black tank (the shitter) into my outhouse, since the black tank is getting rather full, but the discharge hose wouldn’t reach, so that means I have to find someplace with a dump station and pay money to dump my excreta.

Come to think of it, my “house batteries,” which run the lights and everything else, could use a good plug-in, since I’ve been charging them off the engine generator and it’s been too cloudy to get the coveted assistance my solar panel adds on sunny days…so tomorrow night will likely be at some local overpriced campground that has no better scenery than I already have in my driveway, which sits on a cliff above the North Toe River.

You may think it strange that I am sleeping in my camper in my own
driveway, but Jenny and I have a special bond…

Chronic Fatigue, Fibromyalgia, Myofascial Pain Syndrome: What Do They Have In Common?

Hello dear readers.  I am writing this from a Comfort Inn in Grand Rapids, Michigan.  I am in bed.  I have been in bed for 26 hours, except for time out in the bathtub and walking Noga the Angel Dog, which I don’t do very often because she’s trained to go on potty pads.  That’s a blessing because these days I just don’t get far from a bed or chair.  Sigh.

I seem to have Chronic Fatigue Syndrome.  Not so long ago it was called CFIDS, Chronic Fatigue and Immune Dysfunction Syndrome.  I don’t know why they (“they” meaning the committee of chimpanzees that decides our fate by means of the ICD, or International Classification of Disease, which is constantly changing according to progress in medical science and the caprice of its members) changed it, because it seems to exactly describe the phenomena we miserable sufferers experience: constant overwhelming fatigue, and a weakened immune system that results in our catching every virus that comes within 10 miles of us.

I take this whole thing very personally, because up till the year 2008 I felt just fine, almost all of the time.  In fact, except for when I was depressed, I lived a very active, even athletic, life, working with dogs and horses, skiing, hiking, camping, aerobics, dancing, weight lifting, Tai Chi, Kung Fu….hardly sedentary, and this in addition to my long shifts on my feet in the ER and/or office.

Then–wham–I started pooping out on the last leg of my third floor apartment.  Shoot, I’d been going up and down those three floors for over a year, so why should I suddenly crap out two-thirds of the way up?  I went to my GP, who ran a bunch of tests and found me Vitamin D depleted, and with a strange kind of anemia.  Since I complained of a rapid heart beat and vague chest discomfort when climbing stairs or hills, he sent me for an echocardiogram.

That showed a bit of mitral valve prolapse, which can account for all the symptoms I was having, but the cardiologist smirked at me and said that the degree of prolapse I had could not account for my symptoms, and that the only clear result of the echo was that I was “out of shape.”  This made me furious, as I walked everywhere I went, did yoga, and of course climbed stairs.

So, since there didn’t seem to be much wrong with me (although in retrospect all those things I’ve mentioned, if added together, could certainly cause fatigue) I took my perennial state of exhaustion to be the “new normal” and pushed on through it.  Then I started getting sore.  All over.  I went for Chinese acupuncture, took herbs, and prayed a lot, but if anything I just got worse.

At that time I had a thriving Medical Acupuncture practice myself, and kept right on working.  Every once in a while I had to call and reschedule a patient because I just couldn’t muster the energy necessary to keep my own energy field intact while doing treatment.

Then disaster really struck.

I was the holistic doctor to an extended family, who were also close friends.  I was at their home a lot.  One of the grandchildren became ill with a sore throat, runny nose, fever, and general miseries.  The GP did a strep test, which was negative, and since he was a very good GP, he did an actual physical exam (a dying art) and found that the child had a slightly enlarged liver;  so he ordered tests for viruses that typically cause such signs.

The labs showed that the toddler had Cytomegalovirus (CMV), which many people contract as babies or young children.  It is in the herpes virus family that contains chickenpox, Epstein-Barr, and other common maladies.  It’s usually a benign, self-limiting illness, but like all herpes viruses, it goes dormant and hangs out in the spinal nerves, and can, uncommonly, cause a mononucleosis syndrome later in life, if the immune system takes a vacation for some reason.  In people with severely compromised immune systems, it can cause serious illness with damage to various organs.

I got it.  The serious kind.  It affected my small intestine, and I lost 30 lb., and had to take digestive enzymes for the next four years in order to digest my food and not poop it out basically unchanged.  Thank God I am over that now, and can finally eat without worrying about whether I took enough enzyme to digest whatever I am eating.

I have had five HIV tests in the last three years, because various doctors could not believe that I acquired acute CMV (proven by blood test) and didn’t have HIV, because in order to get acute CMV your immune system has to be basically nonfunctional.  All of the tests came back negative.

Why did I just go off on a seeming tangent about my various symptoms and maladies?  Because I want to make the connection between Chronic Fatigue and Immune Dysfunction, and argue that although the ICD monkeys dropped the “IDS” from “CFIDS,” they are clearly wrong, as most of you with CFS will agree.

Yesterday when I was collapsed in bed, yet unable to sleep, I started cruising the Medscape physician-only site and found a great article on the science of Chronic Fatigue.  There was a link to another article on Fibromyalgia, and I started following the breadcrumb trail of a wonderful series of articles that demonstrated that these three syndromes are finally being taken seriously, and much research is being done.

The three syndromes, Chronic Fatigue, Fibromyalgia, and Myofascial Pain Syndrome, have much in common in that all of them involve hypersensitivity in different parts of the brain and spinal cord.  There is a technical difference between the two pain syndromes, but they overlap and I don’t want to complicate things more than they already are, so let’s move on.

Although these syndromes have been recognized by medical doctors for centuries, they have most often been chalked up to neurosis and shucked off as hysterical, or a personality disorder, or imaginary, since they are mostly experienced by women.

But over the last few years, several pioneering university-based neurophysiologists have taken to looking into the possibility that people experiencing these syndromes might have abnormalities in the parts of the brain that secrete neurochemicals such as serotonin, GABA, dopamine, and others.  It turns out that people with CFIDS/Fibro/Myofascial Pain have very different neurochemistry both in brain and spinal cord, in the places where pain is processed.  They also secrete abnormally large amounts of Substance P, which is a direct cause of pain, and other chemical messengers that tell the brain, “I hurt.”

Functional MRI (fMRI) testing showed that the sensitivity of different parts of the brain was turned way up in people with CFIDS/FM/MFP, and each syndrome shows its own distinct abnormalities, which do overlap in the pain syndromes but not in CFIDS, which has its very own brain abnormality.

Almost everyone who suffers from one of the syndromes will have sleep disorders.  The scientists studied this in the sleep lab, and found that the sleep EEG (brain wave test) was abnormal in two very specific ways, in almost all of the subjects.  The abnormalities explain why our sleep is restless and un-refreshing, and also why we get our best sleep in the early morning hours.

And when the researchers looked at the demographics of the three syndromes, they discovered to their horror that the suicide rate in sufferers is TEN TIMES that of non-sufferers!  That fact is, thank God, putting their feet to the flames; and they are actively looking for specific treatments.  But for now, we are on our own.

So what can we do to help ourselves?

So far, the prescription is disappointing.

The recommendations are: eat a healthy diet low in sugars, so as not to feed the overgrowth of bacteria and yeast that many people have as a result of abnormal immunity;  gentle exercise (yeah right, I just walked my dog about 200 yards and my legs ached for hours afterward); meditation (that does help me); muscle relaxants such as gabapentin and a whole list of others; acupuncture; DBT and CBT; psychotherapy and antidepressants to deal with the psychological impact of the syndromes and resulting depression; and pain medication if necessary.

On the subject of acupuncture, I can tell you with absolute honesty that I have cured, and I do mean cured, case after case of all three syndromes.  My clients got better, went back to work and their normal lives, and didn’t come back.  I know they didn’t come back for the reason that they were cured, and not because the treatment didn’t work, because I lived in the community and saw them around, and they referred patients to me.

One woman had such bad CFS and FM that she couldn’t even get out of bed to come to my office, so I made house calls for a couple of weeks until she was strong enough to drive herself to the office for treatment.  She went back to work after about six months, and needed no further treatment.

Sigh.  I wish I could treat myself, but the points are largely on the back.  The specific points and needling techniques are not part of the Traditional Chinese Medicine toolbox, so I guess I need to find an acupuncturist who is willing to learn the special techniques for treating the syndromes.

Until then, I guess I’ll soldier on.  I know I’m not alone in this battle to simply live life.

227

Laura P. Schulman, MD, MA:

‘Nough said…..

Originally posted on depression comix (WP.com):

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