Hallelu

Finally!

I got an appointment at the Cleveland Clinic MS unit!  Now I just have to get there, driving very slowly, with many stopovers, from my current location at the southernmost tip of Virginia.

The appointment coordinator actually offered me an appointment for Monday, but, uh…

Even one year ago I might have jumped into the saddle and been there tomorrow!  But now it will have to be in short hops with many rest area stops to limp around and stretch my poor hands, which have been cramping up like nobody’s business and just giving me general hell.

Last night I read about neurodegenerative diseases, cried a lot, did a bunch of research and decided that I’d better at least get a more definitive diagnosis than the one offered by my neurosurgeon, e.g., “This weakness is not from your spine.  You have some kind of neuromuscular disease.  MS, probably.  My PA will get you a referral.”  After six months, I finally got an appointment offer.  In another three months.  In Phoenix.  With a neurologist who specializes in epilepsy. Nah.

All I want is a diagnosis, and a prognosis.  I want to make sure it’s not some other process like ALS, which is also on the table because of some abnormalities seen on my last MRI but not followed up on by the surgeon: not his department.

Will someone please tell me what happened to doctors, that they quit being doctors and started being fancy technicians?

What about the time(s) over the past 10 years that I’ve complained of total exhaustion and exercise intolerance and heat intolerance to my primary doc, and been sent to cardiologists who only found mild mitral valve prolapse, and the entire issue was scuttled: The End, no further questions, Your Honor?

How about the time I complained of exhausting fatigue and was offered stimulants???  Great.  No thanks.

Or the most recent debacle where I fell down on the fucking treadmill after screaming that my legs were locking up on me (they do that if I use them much), so the cardiology techs dragged me off and threw me on the table so they could get their “post exercise” echo, later condemned as unreadable but billed to Medicare nonetheless?  Exhaustion not of cardiac origin.  And yet, you would think the cardiologist, being an M.D. and all, might have some other ideas regarding the etiology of extreme fatigue, muscle weakness and wasting, spasticity, and pain…wouldn’t you?

Granted, he did exhibit a modicum of holistic thought when he suggested my fatigue might be due to the naughty guts.  Bingo!  Yes, the guts do cause me fatigue, and I do buy that theory.  But the guts do not give me muscle wasting, spasms, weakness, etc etc etc.  They are just there to help make life miserable and to ensure that I don’t get proper nutrition.

I can’t even drink “Ensure,” because it is so full of lactose that even huge doses of lactase do not detoxify it for my enzyme-less guts.  Fuck a bunch of guts, I want to live on sweet tea and clean, cool, dry air.

I want my diagnosis, and then I want to go back to Colorado where the air is clear and cool and the nights are cold.  And when it comes winter, I’ll go back to the high desert.  And when things get worse, I’ll know what to do.

 

Already This Morning

I woke up with a shart.

Not exactly woke up with, but soon after.

…In the middle of the first cup of coffee I’ve had in days.

Lying in bed, dallying with my 35 year old, much loved, many times broken and repaired porcelain coffee cup, made special for me by my dear departed daddy-o, sipping strong Cafe Bustelo made in my simple Melita single cup red plastic drip cone.  Very strong.

It began the way most farts begin.  But it didn’t stop there.

Fortunate that I had my favorite lounge pants on, and that they are black, and that I have a handy clothes pole in my rig where they now hang, dripping dry after a wash-out in the bathroom sink.

I am disappointed.  This morning bulges with plans unfulfilled.  It was to be the second in a series of unparalleled good days. 

Yesterday, I wasted about two weeks worth of energy that I didn’t have, but took a mortgage on my future and went ahead with something wasteful in every way.

I have held off writing about this whole balagan (Hebrew for “wretched mess”) with the cardiologist, simply because it’s too boring to think about, and certainly too boring to write about.  I’m feeling sleepy.

B’kitsur (in short): I have been experiencing episodes of inflammation in my veins, on and off for a year.  Since I must have the torn cartilage in my left wrist surgically repaired, it is now relevant to discover whether this vein issue presents any additional surgical risk.  I was sent to a cardiologist who supposedly specializes in veins, to find out.

This cardiologist did not seem at all interested in my veins or anything else.  Oh yes: he is interested in tests.  Every kind of test that is high tech and expensive, he is interested in.  I believe he might be a little bit interested in money, too.

Last week I endured three kinds of cardiac echo tests, performed by a male technologist whose pinky finger seemed to be using my bare left nipple as a place marker as he worked the echo probe on my heart; at least I hope that is what he was doing.  It hugely triggered my rape survivor PTSD, and I dissociated, leaving him alone with my left nipple.

The next part of the balagan was a stress echo, where they do a regular echocardiogram, then hook you up to a 12-lead EKG (they hook you up real good: instead of merely slapping the sticky EKG leads on, they first scrub you down with alcohol and then sandpaper your skin without asking first whether it’s OK or whether you have any skin conditions, then they stick the leads on your abraded skin without looking to see whether you’re already bleeding) and put you on a treadmill.  You take two or three steps at a normal pace, then suddenly and without warning, they turn up both the pace and the angle, so that you have to trot to keep up; and suddenly your legs feel like they’re going to fall right off and you tell them that; so instead of simply slowing the treadmill down, they stop it suddenly, so you DO fall down.  Then they drag you bodily onto the echo table and do the “post exercise” scan, which of course is invalid because your heart rate didn’t reach the target 85% of maximum.  Shit, I could have told them that.

Now, you must understand that this represents all of what I hate in modern medicine.  Not all.  That comes later.  Most.

Thing One:  This test should have been scuttled.  Medicare should never have been billed for an inadequate exam.  It’s like billing for a blood test where the quantity was not sufficient to test.  And yet it was billed.  Is this fraud, or merely bad practice?  I’m thinking.

Thing two:  When I saw the cardiologist in follow-up for this inadequate test, he never really questioned why I was unable to exercise, even though I have been complaining and complaining and complaining of exercise intolerance to anyone and EVERYONE, including himself. 

Instead of talking this through with me, he went ahead and ordered a NUCLEAR stress test.  NUCLEAR!

How effing much are they billing Medicare for that one?  Cheeziz K. Reist** on a bicycle, I can’t even imagine.  4K?  At least.  With whipped cream and a cherry on top.  No nuts, thank you, they get in my teeth.

The nuclear balagan began yesterday afternoon, following the first decent morning I’ve had in weeks.  The heat has killed my already overheated constitution.  My weight is plummeting, since anything heavier than clear liquids leads to hours of belly pain and retching.

So it stands to reason that on the first morning that I pop out of bed at 0630 feeling rested and ready to engage with the world, I must fast, because fast I must if I am to get this nuclear test behind me.

So I fritter the day away drinking sugary liquids so I won’t get any more hypoglycemic than I already am.  I check my pup into an air conditioned kennel at the vet for the afternoon, and check myself into the diagnostic cardiology lab again.

I am relieved to find that the tech with the heat-seeking pinky has been replaced with a robot who scores very high on the Spectrum, but behaves well and doesn’t give me any shit about using the special tape I brought to secure the IV: special tape that does not rip my skin off.  He gets the IV in on the first try, painlessly, in my only good vein.  I love him.

I’m injected with Technetium 99, the radioactive isotope that the gamma camera will read, to make pictures of my heart at rest.  I’m given my first Chinese Water Torture huge cup of water to gulp, which expands my circulating blood volume.  They want to get the isotope into my heart muscle and cardiac vessels.

The gamma camera scanner is claustrophobic and cold.  I dissociate.

Next thing is the injection through the IV of some stuff that dilates all of my blood vessels very suddenly.  It’s a good thing I’m lying down already, since my blood pressure plummets from 130/85 to 90/60, which is officially the territory of circulatory shock.  It felt very weird.  I decided not to dissociate for a bit, knowing that I could at any time.  I kind of dug feeling how it felt, the weirdness of it all.  I stayed present for it.

Now they wanted me to eat a high fat snack, to help open up my circulation and get things running.  Fortunately I had just such a thing in my backpack.  They did have snacks there, but all of them contained gluten.  That’s why I always bring my own food, anywhere and everywhere.  You can never tell.

After another giant cup of water and two radioactive trips to the bathroom, I went back into the scanner, this time with leads on.  The EKG would coordinate the camera to pick up on the various phases of contraction and relaxation of my heart. Cool.

So that’s done.  Very nice.  Except for the couple of PVC’s (Premature Ventricular Contractions) that I had, which are nonspecific and most likely benign, I am sure that this will be a normal study.

And I think I remember signing a “Medicare balance billing” agreement, which means that anything Medicare doesn’t pay for, I get to pay for. 

Worse, this whole balagan has snowballed from: why does this person have recurrent vein inflammation? into a whole high tech cardiac workup.

Medicine has got itself into a very sad situation. 

I’m crushed to see my formerly noble profession sink so low.

I remember babbling to the tech who did the vasodilating torture test (they swapped him out for the robot for this part), about how any doctor who knew her salt could do everything she needed with a stethoscope, an otoscope, ophthalmoscope, tuning fork, some straight pins, and a few basic lab tests, five working senses, and a working sixth sense.  Your basic Black Bag.

He said yeah, I know, right?  That’s what they do in the third world.

I’m like, yeah, right?  What are you gonna do when the grid goes down?

Meanwhile back at the low tech ranch, I’ve been forcing myself to stay inside my body when I’m out walking The Doggess.  It’s been worthwhile.

I notice that while I do get out of breath, the limiting factor is that after a few minutes both my thighs and my calves start to feel like wood.  If I don’t slow down or stop for a few minutes, my legs just absolutely stop me.  I just can’t go no further.  Nothing doing.

And so [n.b., one is never to begin a sentence with “and so”], what is your diagnosis, Doctor?  (Physician, heal thyself…if you can tell me who said that, you get a prize!) 

Hie thee to the medical literature.  Ah, there ’tis!  What ill manner of bodily curse is’t?  Fie, Doctor!  Take it off me now!  What, cans’t?  Nay.

It is: Neural claudication.

“Claudication” happens when, for one reason or another, arteries experience spasms in response to increased oxygen demands, such as exercise or digestion.  When this affects the heart, we use the term angina.  When speaking of arteries downstream from the heart, such as the legs or abdominal arteries, we say claudication.

The most common cause of claudication is atherosclerosis, and the most common cause of atherosclerosis is smoking.  Second most common, diabetes. I don’t smoke and I’m not diabetic.

Move down one notch on the algorithm.

Next cause: neurogenic.  Degenerative Disc Disease, long-standing.  Yup, got that. Description.  Yup, got that.  What to do about it: um, let’s see.  Whole spine decompression and fixation?  Hmmm, let me think about that for a while.

In the meantime, I have my explanation for the most recent annoying symptom on the list: my right thigh goes into a cramp when driving in traffic, or anytime I can’t use the cruise control.  Claudication!  And it didn’t cost Medicare a thing!

Dammit, is there a doctor in the house?!

Getting back to the shart thing:

Last evening, having completed all of the cardiac testing I intend to have in this life, I collected my ebullient pup from the vet and returned to my tiny-but-it’s-got-a-plugin camping spot.  Had a few larfs with a kindred soul at the far end of the campground, went to bed with high hopes for today. Woke up feeling pretty good, made coffee and a gluten free muffin…whoops, the Crohn’s monster swooped in and snatched another day.  Oh well, let it go, let it go, let it go.  What’s the hurry?  Where’s the fire?

In my guts, is where the fire is.

**Dear R. Crumb, thank you for bringing Cheeses K. Reist into the world.  Cheeziz is his great-grand-nephew, seven times removed.

Miss Biggess Doggess Has A New Toy!

image

Flagstaff loves me.  The ball of yarn keeps getting bigger and bigger: that is to say, I am becoming more and more deeply involved with the workings of this tiny city that perches on the Coconino Plateau, at 7,000 feet above sea level, nestled among a flock of young volcanoes.

After my thirty-first medical provider visit this month, I was overcome by a sensation that something was lacking.

For one thing, I was drained to the tips of my finger and toenails from my appointment with the new Family Practice Nurse Practitioner.  I hate to think how drained she must have felt!

The purpose of this appointment was allegedly to seek a solution to my stubborn high blood pressure.  High blood pressure is bad.  It damages one’s kidneys, causes strokes and heart damage, eye damage, and basically messes you up, usually without any symptoms at all.

Having symptoms, like headaches and blurred vision, means the high blood pressure is getting to one’s brain.

God knows, I don’t need any more brain damage, so when I realized that my permanent headache and inability to read the Louis L’Amour paperback borrowed from the campground laundry room because my vision was blurry might just be high blood pressure symptoms, I went to the Walgreens and bought a fancy blood pressure machine.

The first time I tried it out, the damn thing read 165/106 (normal is about 120/75).  I ran it a couple more times and it said approximately the same thing.  I didn’t like that at all, so after a couple of hours on the phone I got the soonest primary care appointment available, which was two weeks away.  In between times I did all the things one is supposed to do to lower blood pressure, like exercise, breathing, meditation, cuddling with one’s Doggess, and fiddling with medication doses.  And hoping like hell that nothing bad would happen.

Last night my BP was dangerously high, so I took a rather large dose of my medication (don’t try this unless you’re medically qualified), and my usual dose this morning.  My BP in the office was perfectly normal, so of course I felt like a fool.

To make matters worse, I disclosed all of my psychiatric diagnoses and their respective meditations, and the NP completely unraveled.  Poor thing, who can blame her?

To her credit, she did a great job of picking out a team of specialists to help figure out what in the hell is wrong with my immune system and nervous system and skin, and whether all these are part of the same problem, or whether they are separate problems.  As for my blood pressure, she told me to keep doing whatever I did to bring it down, and gave me a script for more of that particular medicine.

Driving back from that exhausting appointment, I spied a grocery-store-cum-gas-station I’d seen before but never stopped at, because it looked down-at-heel and sad, like one of those discount groceries that appear and disappear in a matter of days like mushrooms after a good rain.  Today I needed gas, though, and the price was right, so I waited in line till a pump opened up.

After filling my gas tank, my mind returned to my own stomach.  The grocery had a Starbucks logo on the wall.  Hmmm, a green tea soy latte might perk me up!  I went in.

Have you ever had the experience of going into a drab, shabby building, and finding the inside bright, beautiful, and full of your favorite fresh fruits, veggies, and gluten free foods?  Heaven.  I got my green tea soy latte and headed for the aisles.

Half an hour into the orgy I came to the pet stuff aisle and was struck by a largish wave of guilt, since Atina had spent most of her day in the van, while I was enjoying my medical appointment and now shopping my heart out; therefore, I sprung for the $8 on sale “un-stuffed” furry critter with a squeaker at its head and tail.

I paid for my order (Jeezus Kreezus, $120 for those few things?  And this isn’t even Whole Foods!) and hauled my cart out to the van with my one good hand.  Atina glared at me from her spot on the bed.  She had good reason to be sick of being locked up!

The moment I cut the tag off the new Critter and threw it at her, all was forgotten.

She caught it.  It squeaked!  Just like the squirrels that taunt her all day around here would do if she could ever get her pearly whites on one!

Since then, the Critter has been relentlessly shaken, chewed, squeaked (my ears, my head!), and is sodden with Doggess spit.  Now she sleeps, worn out with worrying the new Critter to death.

The best $8 I’ve ever spent.

So Long, Pluto

By one of those curious twists of the state of time, space, and matter, it seemed good in my eyes on Thursday night to seek the reliable shelter of a State Park, in which to interrupt my trajectory while hurtling across the awe-inspiring hugeness of the State of Texas.
_________________________

A Texan went to visit Ireland.

He saw an Irish farmer out working in his potato field, got out of his rented Cadillac and approached the fellow, and hollered:

(Texas accent): Say, pal, is this your land?

The Irishman cuts the engine on his ancient tractor, removes his battered hat, scratches his balding red head, mops his pate with his tatty handkerchief, jams his hat back on.

(Irish accent, with pride):  Sure and it is, Mester.  Been in my family for a hunnerd years. (Beams, gap-toothed, at the Texan, who is now standing in the dirt road in his cowboy boots, dove-grey Western suit, string tie, rocking with his thumbs hooked over his tooled leather belt with its garish silver buckle.  Door of Cadillac stands open.)

Texan:  Why, that’s mighty fine, mighty fine.  How much land have you got, if you don’t mind my askin’ ? (Chews a toothpick)

Irishman, with pride:  No, I don’t mind a wee bit, sence you’re askin’.  You see that tree stump off there in the distance?  Why, our land goes all the way from that stump, back aways past the house and farmyard, barns, horse pasture, to that stoon fence, ye can just barely see it from here.  (Scratches head again.)

Texan:  I declare.  That’s a right purty leetle piece.  You know, Farmer, back in Texas where’n Ah come from, Ah kin git in mah truck an drahve from sunrise to sunset, and Ah will still be drahvin’ on mah own land.  (Air of superior self-satisfaction)

Irishman: (Shaking head sadly)  Ach!  I had a truck like that meself, once.
__________________________________

The twist of fate is made curious by a happenstance: the first Texas State Park I spied on my map happened to be full, but the sweet and adorable Mescalero Apache ranger at the park office told me that there was plenty of room at the next park down the road, which happened to be right down the road again from the famed McDonald Observatory, home of the second biggest and most scientifically unique telescope in the world.  Yowie zowie, I love space stuff!  And my knowledge base is terrible, so I got all hot and sweaty at the thought of increasing it in such a majestic way.

I scuttled down the ranchy road, reaching the park just about closing time.  Picked myself out a choice spot and settled in, nervous about the javelinas (pecaries, a nasty species of wild pig that stinks and had it in for dogs) and wild boars, that can tusk up a dog or small human faster than you can say “Old Yeller.”  We have seen a lot of their poop, fresh, in our campsite, and if they only come sniffing around of a night, that’s fine, as long as they respect the rules.

The next day I mounted Old Jenny and climbed up the twisty road to the Observatory.  They were having a program on Sun Spots, but since I regularly check the Solar Weather I wasn’t so interested in that.  I wanted Deep Space.  Wormholes, Dark Energy, you know, cool space stuff.  I wanted to see the giant telescopes, but the next available date is a couple of weeks from now and I don’t plan to be here then.  Plus it costs $115, which would be money well spent, but that’s a week’s worth of camping money, so.

But they have “Star Parties,” interpretive viewings of the heavens both aided by normal size telescopes, and with the naked eye, so that one comes away with greatly augmented knowledge of celestial bodies and visible galaxies and nebulae (one, beside the Milky Way: the Orion Nebula.  I was hoping to get a glimpse of the Horsehead Nebula, but you need a higher power telescope for that).

The McDonald Observatory is located on top of a mountain situated above the Sonoran Desert, and is one of the darkest places in the world (at night, and not a cave).  Thus, I was tremendously exited at the prospect of guided stargazing in that spectacular location.  I bought a ticket for $15 and returned to my campsite to do a bit of dog hair mitigation and await the appointed hour.

We got there early (“we,” unless otherwise noted, means my dog and I) and cooled our heels till show time.

Big tour buses pulled up.  I noted them, then blocked them out of my consciousness.

With the approach of show time, I took Atina out for a potty break and put her in the van, ignoring her rueful expression.  It’s tough being a dog.

When I entered the lobby my heart went splat on the floor, then went into a run of sinus tachycardia.  Panic attack. 

Hundreds of lovely young people wearing Texas Tech and University of Texas and Texas A&M sweatshirts milled and shouted in the lobby.

I bailed into the gift shop, which was geared toward children, with book after book after book on the constellations…fer krissake, how many books on the constellations do they need?

I perused the wall charts, the glow in the dark universes that I stuck on my erstwhile son’s ceiling, to give him something to do while he wasn’t sleeping….and noticed something odd.

There were only eight planets.

That is wrong.  There are nine.  Everyone knows there are nine planets!

Then I remembered: Pluto has been decommissioned as a planet, because it is made of frozen water and no rocks.  You have to be made of rocks to be a planet.

It’s not fair.  Other planets are made of weird shit, so why, after all this time, could they not make Pluto at least an HONORARY planet?

I bought a placemat of the Periodic Table, which has picked up a number of new elements since the last time I studied it, and bolted for my van.

The rest of the evening was devoted to doctoring my crushing panic attack.

It wasn’t merely the prospect of standing in loud lines with droves of college students.

It was the sudden realization that I, too, have been decommissioned, like Pluto, and for the same reason: lack of a solid core. 

In our last bitter conversation, my son made it clear that I am not the mother he wanted…or, in his opinion, needed.  He needed stability.  He needed a rock core, not just some object made of frozen gasses.

Pluto and I are no longer welcome in his universe.

Well.

Since I have cried all the way across the enormous state of Texas, I have very clean eyes.  It seems that tears do not simply run out.  The body just keeps making more.

And since my decommission I have had plenty of time to reflect on the universe of mistakes I have made in my life.  Mistake after mistake after mistake.

And all boiling down to what?

Well, at least I have money, for a couple more years, to pay my expenses.  That’s a plus.

See, me and Pluto just keep going around and around and around, but the end is interincluded in the beginning, so there is no getting off this particular merry-go-round.

So me and Pluto and Atina will go ’round until it all winds down and it’s time to bail out.  That’s what happens to stars before we blow up and become Something Else.

So Long, Pluto

By one of those curious twists of the state of time, space, and matter, it seemed good in my eyes on Thursday night to seek the reliable shelter of a State Park, in which to interrupt my trajectory while hurtling across the awe-inspiring hugeness of the State of Texas.
__________________________________

A Texan went to visit Ireland.

He saw an Irish farmer out working in his potato field, got out of his rented Cadillac and approached the fellow, and hollered:

(Texas accent): Say, pal, is this your land?

The Irishman cuts the engine on his ancient tractor, removes his battered hat, scratches his balding red head, mops his pate with his tatty handkerchief, jams his hat back on.

(Irish accent, with pride):  Sure and it is, Mester.  Been in my family for a hunnerd years. (Beams, gap-toothed, at the Texan, who is now standing in the dirt road in his cowboy boots, dove-grey Western suit, string tie, rocking with his thumbs hooked over his tooled leather belt with its garish silver buckle.  Door of Cadillac stands open.)

Texan:  Why, that’s mighty fine, mighty fine.  How much land have you got, if you don’t mind my askin’ ? (Chews a toothpick)

Irishman, with pride:  No, I don’t mind a wee bit, sence you’re askin’.  You see that tree stump off there in the distance?  Why, our land goes all the way from that stump, back aways past the house and farmyard, barns, horse pasture, to that stoon fence, ye can just barely see it from here.  (Scratches head again.)

Texan:  I declare.  That’s a right purty leetle piece.  You know, Farmer, back in Texas where’n Ah come from, Ah kin git in mah truck an drahve from sunrise to sunset, and Ah will still be drahvin’ on mah own land.  (Air of superior self-satisfaction)

Irishman: (Shaking head sadly)  Ach!  I had a truck like that meself, once.
__________________________________

The twist of fate is made curious by a happenstance: the first Texas State Park I spied on my map happened to be full, but the sweet and adorable Mescalero Apache ranger at the park office told me that there was plenty of room at the next park down the road, which happened to be right down the road again from the famed McDonald Observatory, home of the second biggest and most scientifically unique telescope in the world.  Yowie zowie, I love space stuff!  And my knowledge base is terrible, so I got all hot and sweaty at the thought of increasing it in such a majestic way.

I scuttled down the ranchy road, reaching the park just about closing time.  Picked myself out a choice spot and settled in, nervous about the javelinas (pecaries, a nasty species of wild pig that stinks and had it in for dogs) and wild boars, that can tusk up a dog or small human faster than you can say “Old Yeller.”  We have seen a lot of their poop, fresh, in our campsite, and if they only come sniffing around of a night, that’s fine, as long as they respect the rules.

The next day I mounted Old Jenny and climbed up the twisty road to the Observatory.  They were having a program on Sun Spots, but since I regularly check the Solar Weather I wasn’t so interested in that.  I wanted Deep Space.  Wormholes, Dark Energy, you know, cool space stuff.  I wanted to see the giant telescopes, but the next available date is a couple of weeks from now and I don’t plan to be here then.  Plus it costs $115, which would be money well spent, but that’s a week’s worth of camping money, so.

But they have “Star Parties,” interpretive viewings of the heavens both aided by normal size telescopes, and with the naked eye, so that one comes away with greatly augmented knowledge of celestial bodies and visible galaxies and nebulae (one, beside the Milky Way: the Orion Nebula.  I was hoping to get a glimpse of the Horsehead Nebula, but you need a higher power telescope for that).

The McDonald Observatory is located on top of a mountain situated above the Sonoran Desert, and is one of the darkest places in the world (at night, and not a cave).  Thus, I was tremendously exited at the prospect of guided stargazing in that spectacular location.  I bought a ticket for $15 and returned to my campsite to do a bit of dog hair mitigation and await the appointed hour.

We got there early (“we,” unless otherwise noted, means my dog and I) and cooled our heels till show time.

Big tour buses pulled up.  I noted them, then blocked them out of my consciousness.

With the approach of show time, I took Atina out for a potty break and put her in the van, ignoring her rueful expression.  It’s tough being a dog.

When I entered the lobby my heart went splat on the floor, then went into a run of sinus tachycardia.  Panic attack. 

Hundreds of lovely young people wearing Texas Tech and University of Texas and Texas A&M sweatshirts milled and shouted in the lobby.

I bailed into the gift shop, which was geared toward children, with book after book after book on the constellations…fer krissake, how many books on the constellations do they need?

I perused the wall charts, the glow in the dark universes that I stuck on my erstwhile son’s ceiling, to give him something to do while he wasn’t sleeping….and noticed something odd.

There were only eight planets.

That is wrong.  There are nine.  Everyone knows there are nine planets!

Then I remembered: Pluto has been decommissioned as a planet, because it is made of frozen water and no rocks.  You have to be made of rocks to be a planet.

It’s not fair.  Other planets are made of weird shit, so why, after all this time, could they not make Pluto at least an HONORARY planet?

I bought a placemat of the Periodic Table, which has picked up a number of new elements since the last time I studied it, and bolted for my van.

The rest of the evening was devoted to doctoring my crushing panic attack.

It wasn’t merely the prospect of standing in loud lines with droves of college students.

It was the sudden realization that I, too, have been decommissioned, like Pluto, and for the same reason: lack of a solid core. 

In our last bitter conversation, my son made it clear that I am not the mother he wanted…or, in his opinion, needed.  He needed stability.  He needed a rock core, not just some object made of frozen gasses.

Pluto and I are no longer welcome in his universe.

Well.

Since I have cried all the way across the enormous state of Texas, I have very clean eyes.  It seems that tears do not simply run out.  The body just keeps making more.

And since my decommission I have had plenty of time to reflect on the universe of mistakes I have made in my life.  Mistake after mistake after mistake.

And all boiling down to what?

Well, at least I have money, for a couple more years, to pay my expenses.  That’s a plus.

See, me and Pluto just keep going around and around and around, but the end is interincluded in the beginning, so there is no getting off this particular merry-go-round.

So me and Pluto and Atina will go ’round until it all winds down and it’s time to bail out.  That’s what happens to stars before we blow up and become Something Else.

I Feel Like A Jerk

Have you ever felt like a jerk?  Huh?  Have you?  Sure?  Noooo, not really!

Well, I do.  I feel like a total jerk.  It’s one of the manifestations of my complete and total discomfort with Who I Am.

Yes, and it’s part of the problem with being an Aspie.  Yes, I know I haven’t written about being an Aspie before.  That’s because I didn’t have a “formal diagnosis,” just a lingering suspicion buoyed up by results of countless online quizzes.

I have confronted my psychologist about this a number of times, and she has hemmed and hawed about it, and said things like, “Haven’t we been over this ground before” and “You know you are, so why do you need a formal diagnosis?”

DAMMIT, I NEED THE FORMAL DIAGNOSIS SO THAT WHEN I TOTALLY FUCK UP AND MISINTERPRET SOMEONE’S INTENTIONS, I CAN LOOK AT MYSELF AND INSTEAD OF FEELING LIKE A TOTAL JERK, I CAN SHRUG AND SAY, “I’M AN ASPIE, AND ASPIES OFTEN MISINTERPRET PEOPLE’S MEANING, THAT’S ALL.”

She doesn’t get it.  She is so awfully, awfully neurotypical, it’s starting to get on my nerves.

One of several reasons I feel like a jerk at this moment is that I have already actually been a jerk twice that I know of, just this week, and it’s only Wednesday; and I suspect that one of the jerkees might have outed me to another person whose esteem I value, thus spreading the jerkness high and low.

And still I hear Dr. What’s-Her-Name saying, a bit irritably, “You’ve got plenty of diagnoses already.  What do you want with another one?”

I want a reason for why I misunderstand people all the time, for why I’m so naive, for why I get taken in by people with ill intentions all the time, for why I never, ever, for one moment have felt like I belong on this planet.  THAT’S what I want.

I want this diagnosis to be formalized so that when I do some stupid thing for an Aspie reason, I can just go ahead and say to myself, “Well, there you go, being an Aspie again, you couldn’t have seen that one coming but please try not to do that one again.”

She can’t fathom why in the world having a diagnosis of Autistic Spectrum Disorder, NOS would be such a comfort to me.  I have tried to get her to understand:

VALIDATION, VALIDATION, VALIDATION.  Did I say it loud enough? 

No, probably not, because I can’t tell if she’s being sarcastic and saying yes, of course, I know you’re an Aspie, so why are we even having this conversation?  Or conversely, no, I don’t think you’re an Aspie, so why are you harping on this?

Ugh.  I don’t know why I have to fight for a formal diagnosis of the SINGLE MOST IMPORTANT ASPECT OF MY SELF-NESS of all.

Yes, I am bipolar, have ADD, PTSD, LMNOP alphabet soup…But the one thing that has given me my triumphs and caused the most pain is Asperger’s Syndrome.

Syndrome.  Not disorder, although it has served me up plenty of disorder.  Yep, we even talked all about the various types of miseries Asperger’s has got me into.

But really, I feel like a jerk, and I don’t even want to explain why.

A Disordered Mind

I look around and all I see is clutter.  Unlikely pairings: A glass with dried remnants of good red wine atop a crumby plate that also holds a cast-off case from a long disused (broken) cell phone.  Plastic sacks of clean laundry, some of them from last winter, not yet put away.

Useful, that: the weather is already wintry here, so no need to hunt for the winter clothes.  They’re already in reach.

A microwaveable hot pack draped over a still-unopened bedbug-proof pillow case.  I am phobic about bedbugs, but I have yet to put the protective casings on my bedding, even though I travel frequently to places where there might be bugs.  I’ve had the casings for three years and counting.

It oppresses me.  Why do I let things get this way?  Every time I move into a new place, which is often, I vow that I will turn over a new leaf and keep it clean and tidy.

But I never stay long.  My disordered mind gets to feeling restless, or else some duty calls me away, and I start over…again.

After packing up to leave for new digs, I marvel at the expanse, however small, of clean, dust-free floor and counters.  Why could I not just maintain this mind-soothing order?   Such a balm to the senses, to be able to look around and distinguish individual objects rather than piles, piles, piles of things thrown down, left, tossed away, to be taken care of later, a “later” that never arrives.

I think I was born this way.  My child-room was the same way.  I guarded it fiercely from that hated intruder, my mother.  If she got into my room she threw out my treasures indiscriminately.  I might come home from school to find my room spotless, sterile, bereft of projects in progress that I might have abandoned months ago, but still….I might have finished them, someday, but now they are gone and the potential in my mind’s eye is also gone.

And she dumped out my socks drawer, along with the family of field mice that had taken up residence there.  My pets.

There was never a time when I did not hate my mother.

Perhaps it has to do with the constant acid rain of her curses, name-calling, denigration falling on my infant head.  Maybe the piles of junk started out as a bulwark against her obsession with neatness.  Up your ass with a piece of glass, “Mom.”

I survey the utter chaos in my dwelling of today, every single surface piled with stuff that either needs to be put in some logical orderly place or simply thrown out.  I am not a hoarder.  I just feel paralyzed, looking at all the stuff, and it seems to be looking back at me imploring me to do something about it.  Or at least just to take out the trash…start there.

Sometimes I get the urge to just go out and lock the door and buy a tent.  You can’t stuff much in a tent, can you?

Then there is the mail.  I am paralyzed by the sheer bulk of what appears in both my physical and my email boxes.

I have three or four email accounts that I never even look at.  There is probably something of import, certainly, positively, and possibly some three or four items that might even have some significant impact on my life (license renewal notices, things like that).  But I cannot face the task of cleaning out 999,000+ messages from my Yahoo account.

Then there is my mind.  I have packed a lot of stuff into this finite space, within this bone box.  Yes, of course I have heard the rhetoric about how we only use “x” tiny percentage of our available brain space….and I think that’s bullshit.  The rest of our brain is hard at work backstage, doing stuff that keeps the rest of us running, more or less.  Mine seems to be less, or maybe (more likely) too much.

Sometimes I think that if I could just break out of this 60+ year habit of surrounding myself with chaos, that my mind would work better, that my brain would feel more organized and content.

In fact, I am sure of it.

On the other hand, I think my abnormal unusual mind might have built a fortress around itself, beginning as a very young person, with piles of junk, to protect itself from my mother’s compulsive cleaning and straightening of everything in her environment.

Not to say that my disorderly mind was caused by my mother’s OCD.  No, I believe I was born with this mind, and to tell you the truth, when I am not suffering from the pain it causes me, I enjoy the lightness that allows my brain to fly to places where a more tethered mind could never go.  It is an artist’s brain, and I like it, when it lets go of tormenting me.

I used to make some astonishing art.  I recently saw a set of slides of my art from the ’70’s that must have been a portfolio for getting into one of the three art schools I attended.  I was bowled over by the beauty and quality of my own work.

What happened to that?  Where did it go?  I can pick up a pen or some colored pencils, even now, and make a piece of art that would look good on any gallery wall.  Yet I don’t have the urge, the drive, to do it.  It’s lying in the pile of unused talents and vocations, over there in the middle of the floor, where I have to walk around it to avoid tripping.

My music has gone to hell because of the inflammation in my hands.  I can still sing, but I am afraid to, because I might lose that too, and so I actually do lose it because I don’t use it.  Or to tell you the truth, I forget to sing.  How strange.

I forget to listen to music, except for Pandora, because I just, I just….forget.  So except when I am finally doing the dishes and really need something to distract my mind so I can keep on task (oh God….how strange….), my environment is silent except for the background noises, the furnace, the honk and wail of the railroad trains (how I hate these shrieking interruptions in my silence), the mumbling roar of the river after a big rain.

My shrink is sure I have ADD.  He pushes stimulants.  I try them.  They make me feel creepy, and they don’t help.

I know I don’t have ADD.  I have something far deeper.  I have a Disorganized, Dis-Ordered Mind.  I don’t think there’s a cure for that.

Don’t.

Don’t tell me about DBT, CBT, LMNOP.  I’ve done those.  They are interesting, and they help me to understand that Joe Shmoe might just be having a bad day that I was not the cause of.

But they don’t fix my disordered, disorderly brain.

 

Dissociative Identity Disorder

I LOVE THIS POST!!!! You Must Read It.  I found it on Kat’s blog.

Heathers Helpers

Dissociative Identity Disorder (DID) is portrayed in the media as some sort of wacky, wild, really cool to watch phenomenon. If that isn’t their angle? They are usually discussing the controversy of the diagnoses. I understand all that but I feel that perhaps if I share what it means to me, it will take the confusion out of it for some people. I can try right?

Everyone has multiple personalities/identities. Yes, even you.
If you stop to think about it, you are not the same when out with your friends as you would be if you were out with your children. You are different with your spouse than you would be with your parents. You can become professional at work then transform to a carefree spirit when you go out for an evening with your best buddy. Even your pets get a different side of you. Yeah… I know all…

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Enter The Black Dog

Normally I’m pretty good at cloaking my moods.  I’m trained in the art of dissembling.  One of the hidden maxims of medical training is, “Control your face.”  Don’t let the patient know that you’ve just found a….you’ve just done a……and barely got yourself out of it….your surgical assistant is the most beautiful thing in the world…you just farted.  Etc.

One thing it’s hard to conceal is The Black Dog’s visits: depression.  I’ve never been good at it.  I cry at the drop of a hat anyway.  So I’ve gotten good at noting which exam rooms are empty, so as to duck into one for a good bawl, and exit red-eyed.

“What’s wrong with your eyes?”

“Allergies.”

Yesterday I woke up feeling like somebody had clubbed me over the head.  I couldn’t tell where I was in time or space.  My brain felt like chocolate pudding, but not at all tasty.  Actually, I didn’t wake up at all.  If a friend hadn’t texted me at 1:45 pm, I would probably still be asleep.  Poor starving Noga lay next to my head, resolute.  If I had kept right on sleeping, I don’t think she would wake me up to feed her.  I don’t know if that’s good or bad.

I felt kind of like I felt when I took my bedtime medicines in the morning, except this was even worse.  I was hoping it would wear off as the day (what was left of it) wore on, but no.  At bedtime last night I resolved only to take those medications which if you do not take them you might get a seizure, which happened to be the same meds I go to sleep by.  How convenient.

I was quite sure that after a good day’s/night’s sleep, certainly whatever I had taken would have worn off, but no.  Well, it did, to some extent, but then I started feeling cross and weepy.  I yelled at my dog.  I’m very relieved that she seems to understand, and cuddled up with me for a lie-down-not-nap after I got from the grocery store.  I’m amazed that I got back, since I really, really should not be driving in this condition.

I still have not put away the groceries, six hours later.  I have not put away the enormous piles of laundry that I took to the laundromat the day before the day before.  And I just read an article about the habits of Brown Recluse spiders, that they sequester themselves in the fingers of your work gloves (!) and in piles of laundry left on the floor (!!).  Well, these are in black plastic bags, if that helps.  (The reason I was reading up on Brown Recluse spiders is that I found one uncomfortably close to where I sleep, the other day.)

Last night, the night between Days One and Two of the Feel-bads, I had one of my thankfully rare episodes of chest pain.  They occur sometime in the middle of the night, and are so intense that I can’t move.  Even if I thought it was a heart attack, I would not be able to move to call the ambulance.  So I have learned to have the attitude that if it’s my time to go, it’s my time to go, and I am a Do Not Resuscitate specimen anyway.  I toy with having that tattooed across my chest, but my religion specifically forbids tattooing.  I mean, come on, like 5,000 years ago there was a law against tattooing?  What, Moses was afraid we would all become, like, Goths?

Where was I.  Oh yes.  This episode of chest pain occurred between Days One an Two of the Feel-bads, and I was not at all sure I was going to wake up at all, but in fact my alarm did rouse me, as it hadn’t on the previous morning.  I rose, feeling hopeful, but a wave of nausea washed over me and I sat down on my bed again, uncertain, until I remembered that my mother had to go and have some tests at the hospital and I was supposed to go and sit with Dad so that the morning caregiver could go to his second job.

I managed to crawl out of the house at noon, after waking at nine.  Given that I don’t even have a shower to loiter in, which I would have done had I had one, I can’t account for the time at all.

My mother was at home already, triumphant that even though they had done the wrong test, it was negative and therefore she knows more than me.  But she needed tomatoes, so if I were going to the store, would I get her two?

I hadn’t really been planning to go anywhere, given my foggy mental condition, but I caved in to her request and got in my car, very slowly and carefully, and in that condition drove to the store, where I discovered that I needed at lot more than just her two tomatoes.

On my return to the P’s house I caught my wrist in the tailgate of the Outback as I was closing it, and my paper-like skin split over the back of my right wrist.  I didn’t notice the blood until I got home, though, which is what prompted yelling at the dog, because I was bleeding all over the place and she was blocking the passage between myself and the sink full of dishes, where I wanted to wash my wound and see how bad it was.  It could be that she knew something was up and was concerned about me.  That is probably the case.

As you see, I have diverted you from thinking about the fact that somehow or other, The Black Dog has made his way to my doorstep.  Ah, that was what Noga was bugging me about!  It was really as if it hit me right as I walked in the door: the wall of depression.  Smack.

I don’t know what triggered what, in the Feel-bads scenario.  Could have been either one, doesn’t matter.  This morning I took my meds as usual, and I think I did on The Lost Day before that.  If I don’t feel better tomorrow I’ll increase my Lamectil by 50 mg.  My shrink, who has been my shrink since 2001, he and I have protocols for everything.  Depressed?  Add more Lamectil.   Psychotic and/or manic?  Seroquel.  Anxiety?  Clonazepam or Lorazepam.  And so on.

But tomorrow is another day, and this one ain’t over yet.  My lie-down with Noga helped, and I know she’ll want to cuddle at bedtime–she always does.  She’s very predictable.  She runs on ritual, on routine.  And by default, she causes me to have a modicum of routine, which I would not otherwise have, being unemployed and an undisciplined writer.  She has just had her evening bit of obedience training–she demands this every evening at 8:30, not because she so much enjoys the training as she does the treats that accompany it.

And now it’s time for evening meds, brush the teeth etc., arrange the nighttime necessary things in the sleeping area: tissues in case of crying and its accompanying snot, bottle of seltzer (I really like my water to sparkle on the palate) bottle of Ouzo (I like a little Ouzo before sleep, if I don’t fall asleep from the meds before I have a chance to drink it), pee bottles (pee bottles?  Right.  I don’t have a toilet).  And one little fuzzy golden Lhasa Apso, who will no doubt jump up in the spot where my feet are supposed to go and give me the “Apso Look,” which is indescribable; if you have seen it you’ll know what I mean.  But what she means is: “Show me that you love me and haul my 13 pounds up to your face and give me kisses and hugs.”

Which, of course, I will be delighted to do, at the peril of soaking portions of her fur with my tears.

Auditory Hallucinations

They’re at it again tonight.  I can’t quite tell if it’s a Cajun band or some kind of carnival music, but it’s there, distant, but constant, like a party going on a couple of blocks away.  Only there’s no such band, except in my brain.  I hear music when there isn’t any.

My shrink thinks it’s definitely an auditory hallucination-type phenomenon.  I can’t disagree.

I think it’s related to the random phrases of music that I often hear, usually one or two measures in 4/4 metre that repeat themselves endlessly, populating my temporal lobes with maddening frequency.  They’re not phrases from tunes I know or have recently heard, just randomly-generated sequences, and not heard on any particular musical instrument or voice.  I keep thinking I ought to write them down or record them, and maybe at some point they might meld into some sensible piece of music.

But tonight it’s the gypsies playing in the background, far away.

I think it might be related to the fact that I cut my Seroquel dose in half a few days ago, because it was affecting my balance, my speech, my thinking….in effect, I was over-medicated.  So I guess if I have to choose between distant calliopes and stumbling idiocy, I’ll take the former.  But I must say, it’s annoying as hell.

If I do something to create “white noise,” then that gets turned into phantom music as well.  Ear plugs?  Nah.  Just makes it louder, as if it’s trapping the music inside my head.

The only thing that helps is to put on some other music.  Sometimes I put a long playlist on my iPod on “repeat” and leave it on all night.  That does help me sleep.  I’ll do that now.

Oh, brain, brain, why do you misbehave so?