Eighth Night

The ultimate night of Hanukkah, in the year 5777 from Creation.

And the ultimate night of the civil year 2016.

And the beginning of Yom Rishon, or First Day, that always begins after the sun sets on the Holy Shabbat.

Time to be doing.  Time to be getting up and going! 

I think about my life in the past.  I was always getting up and going, doing, and doing even more!  I was never satisfied with “good enough.”  It had to be perfect.  Everything had to be perfect.  No such thing as “good enough.”

Being sick is pure torment.  I forget all the time why it is that I’m not at work.  I jump up and head for the phone, gonna get some work happening around here, can’t be that hard…OUCH!  Who broke my fucking arm?  WHOA, what happened to my neck???  And somebody’s stabbing me in the heart….what the fuck is going on here?  Why can’t I just go the fuck to work like a normal human being?

Take away my ability to do meaningful work, and you take away my self-worth.  I have a hard time feeling like I’m worth a rat’s ass even on a good day, when I’ve gone in and saved lives…but when I’m stuck on the sidelines, I may as well be dead.  

It would be a lot easier if I could tell from one day to the next, how I am going to feel.  If I knew, for instance, that every Tuesday would be an OK day, that I would go to the bathroom like a mensch, and my shoulders wouldn’t cause me to squeak every time I reached for something, and my brain would not be either fogged over from depression or reeling with the electrical overload from mania…if I could count on every Tuesday being a good day, then it would be possible to get a volunteer gig for Tuesdays.  A volunteer thing would do wonders for my heart and mind.

Too bad I don’t have any good Tuesdays!  Or Wednesdays, Thursdays, etc.

I hate to whine.  I know some people are going to actually read this, and probably will go, oh, fer krissake will you stop whining and get on with it!

I feel the same way. 

It’s been 16 1/2 years since I fell off the balance beam.  I have held on to the notion that there must be some greater purpose in it.  That, you know, it must be part of the Grand Design, that certainly I would be one of those who Triumph Over Adversity.

That has not been the case, at least not so far.  I haven’t given up.  Where there’s life there’s, etc.  It’s just that things are gradually becoming more unpleasant.  I wonder when, and how, this thing will end?

Alice B. Toklas Rides Again…and again…and again…and….

Chocolate.  More chocolate!  Gluten free.  And….medicated!

Yes, I tried a piece hot out of the oven.  I need the medicine, and the chocolate doesn’t hurt. It’s medicinal, too, after all.

The wind is kicking up a ruckus outside with the kinds of cactus that blow around so they can stick in your dog’s feet the next day.  It contributes in a bad way to my current state of ultra-ultra-ultra rapid cycling, punctuated by a few episodes of the dreaded mixed state.

I used to take Seroquel for this.  I’m not sure it broke the cycle, but at least it knocked me out so I could get a break from it.  But I started getting very bad neurologic side effects from the Seroquel, and had to stop it.  Some of the nervous system damage has turned out to be permanent, so there’s no way I’m going to try any other drugs in that class (atypical antipsychotics).  So in a word, I’m fucked.

But there’s a Lone Ranger on the horizon…I hope.

I have been so remiss in writing here that I can’t remember what I’ve told you.  Here, I’ll recap:

Spine pain got bad, had lots of consults, results: spinal arthritis, many collapsed discs, moderate spinal stenosis, and…drumroll…five vertebrae are filled with a benign tumor.  It’s benign, because it doesn’t metastasize, but it’s locally destructive.  And I have it in my liver, and god knows where else.

There are other joints in this pity party.  None of them are smokeable.

Which brings us to The Point:

I began using medical cannabis over a year ago.  It takes my spine and joint pain from “all-encompassing, intrusive, consuming” all the way down to, “OK, I can definitely feel this, and I think I’ll do the laundry and walk the dog now.”

That’s the difference.  Of course, I use a special strain of cannabis (PennyWise) that is engineered to have analgesic, anti-inflammatory properties while not being overly psychoactive.  I can get things done, and I’m not constantly going, “Ouch!  Shit!  Fuck!  Damn!” and so on.  Like, right now my thorax is aching and so is my neck and shoulders, but I’m not paralyzed by it.  Nevertheless, I am going to stop writing all hunched up, and go light my Hanukkah menorah.  Sixth night.

Red Flag Warning

image

Here on the shores of Lake Michigan, at a state park right on the dunes, all is peaceful after a line of thunderstorms whipped the lake into a froth of foamy breakers.

image

As each five-foot wave recedes, it takes with it a hiss of sand that whisperes: “Riptide, Riptide….” that terrible current that will suck the sand from under your feet, sweep you up and before you know it, you’re bobbing around beyond the surf line, wondering how you got there.

A red flag with a “No Swimming” symbol on it cracks in the wind at the top of the flagpole.  Parents watch their children playing in the undertow, arms folded, chatting.  I bite my tongue, wanting to run and shake them and point to the red flag. 

The past few weeks have been frightening.  I’ve been swimming through the cloudy seas of dissociation since….well, ever since I turned my back on the beautiful West, where I feel grounded and relaxed.  That’s been a while.  Since the end of June, I think.  I remember it was beastly hot in Northern Arizona.  I came through Colorado, a lovely cool break, and headed for Michigan, where I picked up my new rig and camped in Michigan’s Upper Peninsula before schlepping all the way to North Carolina to get it registered there.

It was on my way back, via West Virginia and Virginia, that I realized I could only drive a couple of hours a day before becoming completely exhausted and having to stop for the night before mid-afternoon.

This is crazy.  I’m one of those fanatics that likes to see if I can break my own long distance driving records (that is, if I really want to get somewhere rather than noodling along enjoying the scenery).  I wanted to get back to the West, to high altitude, to the beautiful mountains and forests of conifers with their resinous fragrance.

I’ve been having bouts of exhaustion that come and go, for years now.  But this was beyond anything I have ever experienced.  I felt as if I were struggling with all my might just to hold on in the same place, as if some force were dragging me down.  The stifling humid heat.  That has something to do with it.  Any heat, anything warmer than 80°F, totally wears me out.  Add humidity, and I’m body slammed.  Can’t move.

I’ve been having spells of extreme muscle weakness, muscle wasting despite living outdoors…hard to do.  Muscles going into spasm, cramping up, having to stop whatever I’m doing to wait for the cramp to ease up.  My life.

I decided to make a stop at the Cleveland Clinic, to check this out

Like most medical encounters, this one involved several hours in the MRI scanner, many tubes of blood, referrals on to other departments, and I think by the time I get finished it will already be winter.

Since I had a few days in between appointments, I came up to Michigan to enjoy the late summer peace and quiet of the State Parks.
………………………….

I remember another day, in 1992.  A bright blue day on the island of Maui.  My Pediatric Trauma conference had happily chosen the beautiful town of Lahaina as our meeting place.  The conference venue itself turned out to be a sprawling 1960’s vintage resort with a golf course, etc., beach frontage, etc., and it cost a bloody fortune.  I booked a room in a Colonial era inn, graciously furnished, with a crystal clear swimming pool lined with handmade ceramic tiles–and at half the price of the awful resort. I was an habitual swimmer back then: I put in an hour every morning before getting my son up and off to school.  Thank God.

In those days I did not know I was bipolar.  All I knew was that I always felt restless and jittery, and was often depressed and sometimes suicidal.  I managed all of this-not very well-by exercising to the point of exhaustion every day, often swimming, running, weightlifting, and dancing in the course of 24 hours.  Sleep was an infrequent visitor.

So I swam in the beautiful pool in Lahaina, and took my spare suit to my conference meetings in my backpack, to swim in the resort pool at the lunch break.

Our Big Social Event for that meeting was to be a Real Hawaiian Luau (groan).  I was disappointed in the organizers’ cultural insensitivity (tourist attraction: Hawaiians!).  Maybe it was that I had just completed my Master’s Degree in Cultural Anthropology a few years earlier.  But it was the big networking opportunity of the year: attendance essential.

I arrived at the conference center’s private mile of beach a couple of hours before the luau was to begin.  I wanted to savor some solitary beachcombing while the other attendees were out with their golf and tennis.

Red flags whipped and snapped in the stiff breeze that churned the tall breakers into foam as they thundered onto the beach.  There was a storm in the South Pacific, but here in Hawaii the sky was a dark blue crystal dome.

I mostly grew up by the sea in New England, where the people and the waters can get downright crusty.  I took a look at the waves and decided that swimming was out of the question; so I shifted my shell collecting mission to the highest tide mark, a span of dried and decaying sea-leavings far up the beach.

The sun hung low over the western horizon, glaring straight into my eyes.  I put on my brand new $100 Bollé shades…my first expensive purchase “just for me” since landing the new job.  Ah, they fit perfectly.  Now to find the ultimate cowrie shell!

A cloud covered the sun.

A very sudden cloud!  Perhaps the storm…I looked up from my shelling.

I just had time to grab a breath and clap my hands over my brand new sunglasses when the wave, towering at least three times my height, crashed down on me.

Years of martial arts training saved my life then.  My body instinctively became liquid.  I went with the wave, flowing with it.  I knew if I fought, it would break me.  The wave had the force of the whole Pacific Ocean behind it.  I made like the seaweed that flows and floats and survives.

I tucked into a ball.  The sea bounced me across its floor.  I still hung on to those glasses.  If I was going to die, it would be with my new shades on!

At last, an eternity later, I bobbed up to the surface and gulped air.  I looked around in astonishment: I had come up behind the surf line, out where the boats were moored.

The swells were huge.  It felt as if I were floating up the sides of mountains, sliding into valleys.

Worse, so were the giant catamarans that took people on whale watching tours…hundreds of people at a time.  They bucked like gigantic steeds against their mooring ropes, their bows rising, enormous pontoons clear of the water, then crashing again as the rollers went by…

All around me, these juggernauts strained at their ropes, sending sheets of water over me with each crash so that it seemed every moment I was blinded again.

I finally drew a bead on the shore and struck out for it, body surfing whenever I could to conserve energy.  I swam up the back side of the waves and surfed down the front, over and over and over…why did the shore seem no closer than before?

The tide was going out, is why.  And it was taking me with it.

I swam harder, finally got to where I could touch bottom, and ran like hell for the beach.  But just as I reached knee high, my legs were sucked out from under me, and the sky clouded over once more…I grabbed a breath, and my glasses, and crash….I collapsed, rolled into a ball, bounced across the sea floor, and came up, an eternity later, right between the pontoons of a sea-going catamaran…about to crash right over my head!  I dived, and the shock of the boat crashing into the trough of the wave sent me rolling again, but this time to my advantage, as I was a few waves closer to the beach.  I started again, strong but pacing myself, knowing that I could get free of this rip current by swimming parallel to the beach…if only I knew how wide the current was!  It could be miles wide.  And I couldn’t afford to get caught in the shallows where the waves breaking would break me too…

I reached the beach and dragged myself through the sucking sand.  There it is!  The beach!  I was there.

Then the sun went out again…

This happened five times.  I lost hope of actually living through this thing.  The sea had a bead on my life, but I refused to go down without fighting to the last.

After the fifth wave, I caught a good one in to shore.  I rode it as far as the knee deep mark, hit the sand running and ran right up the beach to the hotel sidewalk and kept running until I hit the pool, where I floated on the calm water and washed the sand out of my hair, my boobs, my butt crack…my teeth…

I wondered that I was still alive.  Or if I was still alive.  Maybe I only thought I was alive, like those ghosts you hear of that don’t know they’re dead yet…why would I have been alive?

And I still had my expensive sunglasses.  Maybe that’s what saved me: I was damned if the sea was going to get my Bollés!

My waterproof geeky Casio calculator watch said it was time to go to the luau.  I dragged myself out of the pool and threw on shorts and Hawaiian shirt from my rental car.

By this time I was feeling it.

But if you’re a Pediatric Trauma specialist, you ain’t allowed to feel.  So you just open that gate and walk into that courtyard with the kitschy tiki lights and the very decent Hawaiian band and the luscious brown dancers with the coconut shells over their boobs….you eat the poi and the pig…doing battle with the sea is hungry work.

Red Flag Warning

image

Here on the shores of Lake Michigan, at a state park right on the dunes, all is peaceful after a line of thunderstorms whipped the lake into a froth of foamy breakers.

image

As each five-foot wave recedea, it takes with it a hiss of sand that whisperes: “Riptide, Riptide….” that terrible current that will suck the sand from under your feet, sweep you up and before you know it, you’re bobbing around beyond the surf line, wondering how you got there.

A red flag with a “No Swimming” symbol on it cracks in the wind at the top of the flagpole.  Parents watch their children playing in the undertow, arms folded, chatting.  I bite my tongue, wanting to run and shake them and point to the red flag. 

The past few weeks have been frightening.  I’ve been swimming through the cloudy seas of dissociation since….well, ever since I turned my back on the beautiful West, where I feel grounded and relaxed.  That’s been a while.  Since the end of June, I think.  I remember it was beastly hot in Northern Arizona.  I came through Colorado, a lovely cool break, and headed for Michigan, where I picked up my new rig and camped in Michigan’s Upper Peninsula before schlepping all the way to North Carolina to get it registered there.

It was on my way back, via West Virginia and Virginia, that I realized I could only drive a couple of hours a day before becoming completely exhausted and having to stop for the night before mid-afternoon.

This is crazy.  I’m one of those fanatics that likes to see if I can break my own long distance driving records (that is, if I really want to get somewhere rather than noodling along enjoying the scenery).  I wanted to get back to the West, to high altitude, to the beautiful mountains and forests of conifers with their resinous fragrance.

I’ve been having bouts of exhaustion that come and go, for years now.  But this was beyond anything I have ever experienced.  I felt as if I were struggling with all my might just to hold on in the same place, as if some force were dragging me down.  The stifling humid heat.  That has something to do with it.  Any heat, anything warmer than 80°F, totally wears me out.  Add humidity, and I’m body slammed.  Can’t move.

I’ve been having spells of extreme muscle weakness, muscle wasting despite living outdoors…hard to do.  Muscles going into spasm, cramping up, having to stop whatever I’m doing to wait for the cramp to ease up.  My life.

I decided to make a stop at the Cleveland Clinic, to check this out

Like most medical encounters, this one involved several hours in the MRI scanner, many tubes of blood, referrals on to other departments, and I think by the time I get finished it will already be winter.

Since I had a few days in between appointments, I came up to Michigan to enjoy the late summer peace and quiet of the State Parks.
………………………….

I remember another day, in 1992.  A bright blue day on Maui.  My Pediatric Trauma conference had happily chosen the beautiful town of Lahaina as our meeting place.  The conference venue itself turned out to be a 1960’s vintage resort with a golf course, etc., beach frontage, etc., and cost a fortune.  For much less, I booked a room in a Colonial era inn, graciously furnished, with a crystal clear swimming pool lined with handmade ceramic tiles.  I was an habitual swimmer then: I put in an hour every morning before getting my son up and off to school. 

In those days I did not know I was bipolar.  All I knew was that I always felt restless and jittery, and was often depressed and sometimes suicidal.  I managed all of this-not very well-by exercising to the point of exhaustion every day, often swimming, running, weightlifting, and dancing in the course of 24 hours.  Sleep was an infrequent visitor.

So I swam in the beautiful pool in Lahaina, and took my spare suit to my conference meetings in my backpack, to swim at the lunch break.

Our Big Social Event for that meeting was to be a Real Hawaiian Luau (groan).  I was disappointed in the organizers’ cultural insensitivity (tourist attraction: Hawaiians!).  Maybe it was that I had just completed my Master’s Degree in Cultural Anthropology a few years earlier.  But it was the big networking opportunity of the year, so attend I must.

I arrived at the conference center’s beach a couple of hours before the luau was to begin.  I wanted to savor some beach time alone while the other attendees were out with their golf and tennis.

Red flags whipped and snapped in the stiff breeze that whipped the tall breakers into foam as they thundered onto the beach.  There was a storm in the Pacific somewhere to the south, although here in Hawaii the sky was a dark blue crystal dome.

I mostly grew up by the sea in New England, where the people and the waters can get downright crusty.  I took a look at the waves and decided that swimming was out of the question; so I shifted my shell collecting mission to the highest tide mark, a span of dried and decaying sea-leavings far up the beach.

The sun hung low over the western horizon, glaring straight into my eyes.  I put on my brand new $100 Bollé shades…my first expensive purchase “just for me” since landing the new job.  Ah, they fit perfectly.  Now to find the ultimate cowrie shell!

A cloud covered the sun.

A very sudden cloud!  Perhaps the storm…I looked up from my shelling.

I just had time to grab a breath and clap my hands over my brand new sunglasses when the wave, towering at least three times my height, crashed down on me.

Years of martial arts training saved my life then.  My body instinctively became liquid.  I went with the wave, flowing with it.  I knew if I fought, it would break me.  The wave had the force of the whole Pacific Ocean behind it; I made like the seaweed that flows and floats and survives.

I tucked into a ball.  The sea bounced me across its floor.  I still hung on to those glasses.  If I was going to die, it would be with my new shades on!

At last, an eternity later, I bobbed up to the surface and gulped air.  I looked around in astonishment: I had come up behind the surf line, out where the boats were moored.

The swells were huge.  It felt as if I were floating up the sides of mountains, sliding into valleys.

Worse, so were the giant catamarans that took people on whale watching tours…hundreds of people at a time.  They bucked like gigantic steeds against their mooring ropes, their bows rising, enormous pontoons clear of the water, then crashing again as the rollers went by…

All around me, these juggernauts strained at their ropes, sending sheets of water over me with each crash so that it seemed every moment I was blinded again.

I finally drew a bead on the shore and struck out for it, body surfing whenever I could to conserve energy.  I swam up the back side of the waves and surfed down the front, over and over and over…why did the shore seem no closer than before?

The tide was going out, is why.  And it was taking me with it.

I swam harder, finally got to where I could touch bottom, and ran like hell for the beach.  But just as I reached knee high, my legs were sucked out from under me, and the sky clouded over once more…I grabbed a breath, my glasses, and crash….I collapsed, rolled into a ball, bounced across the sea floor, and came up, an eternity later, right between the pontoons of a sea-going catamaran…about to crash right over my head!  I dived, and the shock of the boat crashing into the trough of the wave sent me rolling again, but this time to my advantage, as I was a few waves closer to the beach.  I started again, strong but pacing myself, knowing that I could get free of this rip current by swimming parallel to the beach…if only I knew how wide the current was!  It could be miles wide.  And I couldn’t afford to get caught in the shallows where the waves breaking would break me too…

I reached the beach and dragged myself through the sucking sand.  There it is!  The beach!  I was there.

Then the sun went out again…

This happened five times.  I lost hope of actually living through this thing.  The sea had a bead on my life, but I refused to go down without fighting to the last.

After the fifth wave, I caught a good one in to shore.  I rode it as far as the knee deep mark, hit the sand running and ran right up the beach to the hotel sidewalk and kept running until I hit the pool, where I floated on the calm water and washed the sand out of my hair, my boobs, my butt crack…my teeth…

I wondered that I was still alive.  Or if I was still alive.  Maybe I only thought I was alive, like those ghosts you hear of that don’t know they’re dead yet…why would I have been alive?

And I still had my expensive sunglasses.  Maybe that’s what saved me: I was damned if the sea was going to get my Bollés!

My waterproof geeky Casio calculator watch said it was time to go to the luau.  I dragged myself out of the pool and threw on shorts and Hawaiian shirt from my rental car.

By this time I was feeling it.

But if you’re a Pediatric Trauma specialist, you ain’t allowed to feel.  So you just open that gate and walk into that courtyard with the kitschy tiki lights and the very decent Hawaiian band and the luscious brown dancers with the coconut shells over their boobs….you eat the poi and the pig…doing battle with the sea is hungry work.

New Black Box Warnings: FDA

I have a hell of a toothache.  A couple of months ago I broke a tooth, and went to a franchise-type dentist who took emergency cases.  One of the down sides of being a professional vagrant is I don’t have a regular dentist. 

For a little over $1000 I walked out with a new crown and instructions to call if I had any problems.

I did have a problem, before I even left the office.

I felt that I should have had a root canal before the crown went on.  I know my teeth.  They are ornery, pesky things.  They operate in strict accordance with Murphy’s Law:  anything that can go wrong, will go wrong. 

The dentist assured me that the nerve looked fine, and he hated to mess up a basically healthy tooth.

A couple days later, the thing started hurting like a sonovabitch.  I called the dentist, who immediately assumed I was a drug seeker and blew me off, saying that it might take a few weeks to settle down.

It hasn’t.  In fact, it’s getting worse.  Now I have to look for a dentist who will…but wait, it’s Labor Day Weekend!  No dentist till next week, when I have to run up to Michigan to get some warrantee work done on the old brand new RV.  Maybe I’ll find a dentist there, with a lot of luck.

So, in order to buy some time and have at least a few hours out of misery, I took two of my hoarded tramadol tabs.  Now I have maybe 20 left.

Then I opened my email, to find a bulletin regarding a new FDA policy, intended to protect ourselves from ourselves:  black box warnings on both opioids and benzodiazepines, warning that they must not…Black Box MUST NOT…be taken together, because of the potential of respiratory depression leading to death.

A Black Box warning is the strongest labeling there is.  This means that in a time when even being prescribed pain medicine is becoming a remote possibility, those of us who take benzos for anxiety disorders and/or movement disorders, seizure disorders, or insomnia, will have an even more difficult time obtaining effective pain management.  Doctors who prescribe both meds at the same time will open themselves up for censure and lawsuits.  Pharmacists are being given increasing power to simply refuse to fill prescriptions.  They don’t have to, and if the FDA issues black box warnings, they are fully within their rights to refuse to fill prescription A if the patient is known to be taking prescription B.  In fact, if they do fill it and the patient has an adverse effect, the pharmacist is liable, can lose their license, and can be sued.

This is of direct concern to me.  My neurosychiatrist, who unfortunately has retired due to failed back surgery, hammered out a drug cocktail during the course of our 12 year clinical relationship, that effectively treats my bipolar, PTSD, and social phobia.  It includes 3 types of benzos.  All at once.

It also helps with the muscle spasms that cripple me day and night.

Now I fear that when my prescriptions run low, I won’t be able to find anyone to prescribe these lifesaving medicines because they are “too much.”

Worse, the degeneration of my spine is getting to a critical point.  One of the bones in my neck is rotating in such a way that it is pressing against my spinal cord.  I’m going to need surgery soon.  Major surgery, to fuse three of my cervical vertebrae and lift them up off the nerves they’re pressing on.

I won’t describe the surgery, because it makes me sick even to think about it.  I’ll just say that it involves lots of chopping up bone and remodeling.  Very, very painful stuff.

So…in today’s anti-pain med climate, what’ll it be?  Black Box Warning ahead!  Do I get to continue my benzo regimen so I can maintain a semblance of normalcy, and not be a hypervigilant mess, or do I get a modicum of pain relief after having this spinal carpentry fest?  Do I have any say in this matter?

Last time I had spine surgery, I got sent home with zero pain meds.  None.  And that was in 1987!

Why on earth did this happen?

Because I happened to joke to the pre-op nurse who was taking down my then very short med list (one med!) that I took Xanax for the three days before my periods, and that I was addicted to not having PMS.  She wrote down that I was addicted to Xanax!  It was recorded in my chart that I had admitted to being a drug addict.  So when I called the hospital to ask for some kind of postoperative pain relief, the neurosurgery intern scolded me about being a drug addict seeking drugs.  No pain meds.  And that was a relatively minor procedure, compared to the one I’m facing.

I really don’t know what to do.  Sometimes I wish I’d just die in my sleep, so I wouldn’t have to face this surgery and the prospect of being helpless, in agony, without the possibility of comfort.

Tired Puppy

image

We had a big day today and both of us are beat.  However, if you look at the above photo you will see two squiggly lines.  The red one on the right points to Atina’s “squirrel.”  She has to have it in order to sleep.

The blue line on the left points to my foot.  She is using it for a pillow.  This means that I cannot move, or else I will wake up Sleeping Beauty and then what would happen?

What I want to know is why I get all excited about some new Bipolar management strategy that’s working, and immediately get rid of one of my drugs.  I do that frequently, and frequently pay the price.

For instance, I just started Clonidine for my blood pressure, and it has the side effect of relaxation.  I was getting over-sedated from the benzos I take plus the Clonidine, so I decided to start weaning on the benzos because I hate them anyway.

So after a couple of nights of half doses, last night I skipped the lorazepam entirely.

All well and good, I fell asleep just fine.  But it turns out the Clonidine has a very short duration of action, so I found myself irritability awake and looking for someone to kill at 4:30 in the morning.  Well, the only person I found at that time of the a.m. was me, so I lay in bed till it got light, and then I remembered that someone did me the favor of stealing all my camp furniture yesterday.  Kill!  Kill!!  But I had to wait till the office opened, so I guzzled coffee and planned my angle of attack.

It didn’t work any better than the last time I got robbed in that particular campground, which unfortunately has many advantages, which is why I stay there a lot. 

Last time, someone stole my one good pair of chinos and six pairs of blue Smartwool socks, only a couple of years old.  Fuck, fuck, fuck.  That was the find of a lifetime, Smartwool socks in the most lovely shade of blue.  I guess somebody else thought that too.

I told the incredibly rude cunt bitch fuckhead office person about it, and she just sneered at me, so I asked to see the manager, who was very nice and promised to look into it for me but I doubt she will.

I don’t know why, but the office staff all treat me like I have leprosy even though I’ve been paying to stay there intermittently since February.  I stay there when it’s really cold so I can plug in my little electric heater instead of using the propane furnace, which makes these unholy clicking noises all night.  I don’t think I do anything weirder than any of the other weird campers.  I don’t even allow myself to go around having a running conversation with myself like I normally do.  I think they’re all afraid of my dog, who wouldn’t even bite them unless they threatened me, which is one of the reasons I have her.  The other reason is that she’s sweet, sweet, sweet.  Maybe I’m creepy without knowing it.  Oh well, I’m paying them, and all they have to do is take my money, so I get to be myself.  But I miss my camp furniture and socks.

Tonight I’m in a way over my head expensive and chic campground that is far too near Sedona, which is why.  That’s OK though, because tomorrow I’m off to the Mogollon Rim.  I’ll explain more about that later.  I can’t look down to write anymore tonight.  My neck is killing me. 

How Stigma Compromises My Medical Care

I don’t know what to do.

I can bet that most of you will say, “Just be yourself, Laura.  Fuck ’em if they can’t relate to you as the awesome human being you are.”

Well, yeah.  I appreciate that.

However.

I have this service dog, see, and she’s neither little nor cute.  Well, she’s cute to me, but a 75 pound Belgian Malinois is automatically not cute to most people, especially the uptight assholes that tend to go into “the medical field” these days.  Even my therapist does not think she’s cute.  Even when Atina climbed into her lap and gave her kisses, because she could see that the dear lady was clearly in distress, it did not help.  My poor therapist could do nothing except beg me to get the monster off of her, which I did, and Atina reluctantly obeyed but was still of the opinion that the lady needed her attention.

On the flip side, if Atina perceives that someone is potentially a threat to me, she stations herself sideways in front of me, giving the unsafe party the hard-eye, which is dog language for “come over here and make my day.”

This is why I have a Service Dog:

I have a perfect storm of Asperger Syndrome, PTSD, and Bipolar illness.  My judgement about people is shot to hell.  I lost it on April 22, 1970, the very first Earth Day, when I was drugged, dragged into a dark basement, and brutally robbed of my virginity.  That, and the prolonged months and years of running from one frying pan into another fire, robbed me of my ability to read people’s intentions.  I think it’s because I simply dissociate every time I have to interact with other people.  So now that I’m on the far side of sixty and no longer give a shit, I’ve stopped making myself do painful things, and aside from the inconveniences of not having friends, family, or a partner when I have a medical emergency, I feel much better.

Have you noticed that sometimes your fridge, washing machine, microwave, computer, and automobile all crash at the same time?  So now you have to get a ride to the Big Box store, to the bank to get quarters for the laundromat, and a ride back and forth to the laundromat, to the convenience store for ice until the new fridge comes, and while you’re on the phone with Tech Support your phone is giving your ear a second degree burn and probably giving you brain cancer as well….

This is what I call a Wear Cycle.  When everything wears out at once.  It generally falls out when you’re between jobs, or just before those gift-giving occasions, or your wedding.

So as some of you are aware, I am in the throes of a Wear Cycle of the most annoying sort.  My body is falling apart.  I thought it just needed a tune-up and maybe a brake job, but it turns out to be the transmission, the universal joints, the head gasket; and every time they fix one thing, another one turns up bad.

The result is a seemingly endless procession of doctors, PAs, Nurse Practitioners, lab techs, snotty Front Office People, sadistic MRI techs who put me in Positions Of Stress for upwards of twenty minutes while further damaging my hearing with the various hammerings and clangings of that infernal magnetic tube, being told that I need surgery for this, surgery for that, and they all worry about my blood pressure.  Surely not!

You must understand that my relationship with The Medical Field is a mine field.  The minute I leave my van in the parking lot of the doctors’ building, the hospital, the lab, I dissociate.  I am terrified.

But you’re a doctor, you say.  How could you not be comfortable in this oh-so-familiar milieu?

That’s just it.  I’m all too familiar with it.  I know exactly what goes on behind the scenes, and it disgusted me while I was in it, and it terrifies me now.

Because I am…one of those patients.

You know, the aging female with so many complaints it throws your schedule off, and she’s slight dotty, and might be amusing if you weren’t running so far behind, and of course–of course, she has to be a doctor, at least she says she is, and she does know the lingo…and she has Medicare and doesn’t seem to have a job, so she must be disabled, but for what?  She’s not saying, and if you ask, she’ll say something vague.

I know this, because I’ve been on their side of the white coat.

So imagine what the reaction would be if they walked into the exam room and there I was with my Service Wolf Dog.

The entire visit would revolve around whether the person who Works In The Medical Field was comfortable with the Doggess, and whether she thought they were Safe.

And of course she would pick up on my instant dissociation because I dissociate whenever I run into One Of Those People, because of the abuse I suffered when I was working In The Medical Field, and the abuse I have suffered as a patient dependent upon these people’s power.

And the shame of being disabled, which is, according to the ancient tenets of The Medical Field, weak; and even worse, crazy.

I just rediscovered a former mentor who was hugely influential to me when I was a medical student.  She was my supervisor in the Public Health Clinic.  We became good friends, and she helped me crystallize my medical practice world view, which is based on compassion and empowerment of the patient to take charge of her own health and well-being.

It turns out that this amazing woman had a terrible crisis, which lead to a suicide attempt.

Rather than supporting her and helping her to rebuild her life, the medical establishment brought criminal charges against her for lowering the esteem of the medical profession in the eyes of the public.

They drove her out of the profession.  It didn’t matter to them that this heinous act might push her over that very precipice she had dragged herself back from.

It didn’t matter that they were persecuting one of the finest physicians on the face of the earth, for the crime of being human.

All that mattered was that she had “failed” to complete her suicide.  If she had died, she would have been another tragic physician suicide; but since she managed to survive, she was pronounced a disgrace to the profession.

Fortunately she is a strong and resourceful woman.  She cleaned houses in order to feed her children.  She struggled her way back onto her feet, and reinvented herself.  Blessed be.

So I know very well what the result would be, even if the Doggess didn’t bite the Assistant (you hardly ever get to see The Doctor anymore):  “Did you get a load of that lady with the dog?  What a crock!”

Yes, fuck ’em.  They’ve no right, legally or otherwise, to prevent me from having my dog with me.  She’s Durable Medical Equipment, just like a wheelchair.

The only thing is…being mentally ill automatically discredits anything I say.  I’ve tried it both ways.  And unfortunately, whenever I’m honest and disclose that I have DSM diagnoses, I get my case dismissed.  No contest.  No service.  Goodbye, and put some ice on that.  It will feel better in seven to ten days.  No need for follow-up.

In awful contrast, when I have withheld my diagnoses, it’s all sympathy and MRIs.

Hell, I even got a few tramadol tablets for my torn shoulder, when I begged the doctor because my left wrist is in a brace awaiting surgery and my right shoulder is so painful that I can’t even get out of bed without fainting if I forget and try to push myself up with my right arm.  (How do I get out of bed?  By wriggling on my tummy until my feet touch the floor.)

You think she would have given me that prescription for thirty, no refills, if she knew that I’m bipolar?

Nope.  Bipolar people are categorically drug seekers.  Even though I asked for tramadol and not Percocet.  Drug seeker, no way.

I’m stuck.

I’m terrified of those places, and I need my dog.  But the presence of my dog would set off such alarms in the mind of The Medical Field Person that my actual medical issues would be eclipsed by Prejudice.  Stigma.

If I showed up in an electric wheelchair, they would be all ears.

But a crazy person with a dog?

Postscript

After I wrote my previous blog entry, I let my service dog Atina out to pee and putter around.

Then I felt the scream building up.

Every once in a while, the pressure inside builds and builds, and the only way I can let it out is to scream.  A lot of screams, until my throat is sore, my head is pounding, and I’m too exhausted to scream any more.

But I can’t scream when Atina is with me, in the van.  She already gets concerned when I laugh, because she thinks I’m crying and tries to cover me with her body, which is her way of comforting me.  I like it.

And if I’m in fact crying, she licks away my tears while suffocating me.  She weighs 71 pounds.

So when she was outside, the screams overcame me like a boiling kettle, again, again, again, I couldn’t stop.

Then I heard her barking and scratching frantically at the door.  I stopped screaming and opened the door.

She rushed in and threw herself on me, almost knocking me down.  We clung to each other and she gave little worried yips, stood up and licked my face, and I had to go lie down with her for a while and cuddle till we both felt better and calmed down.

It was a beautiful day, so I figured the best thing we could do was to go for a walk.  As I closed the door of the van, I looked for the scratch marks.

They were right by the door handle.  She had been trying to get the door open, to get to me!

What a precious carrot.

 

A Coupla Bummers and A Miracle

Well, it was Thanksgiving in America, again.

A friend of mine calls it Shabbos Hodu.  (“Shabbos” is the Eastern European version of the Hebrew word “Shabbat,” or Sabbath).  “Hodu” is the Hebrew word for both “turkey (the bird)” and the imperative form of one of the many words for “to thank.”  Thus, “Shabbos Hodu!”

In Orthodox Judaism there is no “Thanksgiving Day,” because we formally give thanks to God at least six times a day, and sometimes more often.

The three daily prayers, which take up to an hour each, contain 19 paragraphs of blessing.  Each of these blessings opens and closes with a verse of thanks.  There is a separate blessing expressing thanks in general, and when there is a quorum of ten people, a special very beautiful paragraph is sung that describes the praises of the Angels.  There is a verse in every prayer beseeching the Creator to rebuild Jerusalem, our Holy City.

The other three “Thank you’s” are contained in the Blessing After Meals, said after any meal containing more than a certain amount of bread (the exact amount is part of Jewish Law), and a shorter version that is said after eating any non-bread product containing one of the five varieties of grain that grow in the Land of Israel: wheat, spelt, rye, oats, barley.  The long version takes me 45 minutes to say, because I say each word with concentration on its meaning.  I learned this from my teachers.

In these prayers also, the rebuilding of Jerusalem figures large.  Both sets of prayers were codified while the Hebrews were in exile in Babylon, after the Babylonian conquest had razed Jerusalem.

However, I no longer live in a Jewish community, let alone Israel; and to tell you the truth, I’m not really practicing Orthodox Judaism these days.

It was so wonderful living in our little country, being able to practice my religion in an unfettered way.  We could wear our special religious items–you know, the ones we are prohibited from bringing to the Temple Mount–right in the street, in the buses, anywhere, without people screaming epithets and other unpleasantries.

I once had a conversation with a black woman from New Orleans who had converted to Islam, married a Lebanese man, and moved with him to Saudi Arabia.  I met her in India.  She wanted to know why we Jews had to have our own country, when we could be Jewish anywhere in the world.

I was so taken aback by this question that I had to sit and think for a minute.  At last I got hold of my senses and asked her,

“Were you able to practice Islam in America?”

“Well, of course!”

“Then why did you move to Saudi Arabia?”

“Oh, because it’s an Islamic country!  Saudi Arabia enforces strict Shari’a Law, so it is the purest Islam…”

For a moment, understanding dawned in her eyes, but it faded just as quickly.  I developed something that needed my urgent attention, and left my friend wondering what went wrong.

Oh yes. I was talking about Thanksgiving in America.

Since I’m in America for the foreseeable future, I am doing some things American style, like Thanksgiving Day and gifts for Hannukah (our Festival of Lights, coming up next week).  In Israel, Hannukah is a time for celebrating miracles.  Gifts are not really a central theme.  It’s all about the light. ( More on that next week.)  The American practice of giving gifts on Hannukah seems to have arisen in order to keep Jewish children from being bummed out because of Christmas.

Since my son’s father is Christian, my son goes to him for Christmas.  For the past few years, my son and I have been “doing” Thanksgiving together.

While my father was alive, my son would come to my parents’ house and he and I would make a kosher turkey, and we would all get gorked on the usual T-day dishes.

Last year I was still in shock from my father’s death in early October, so my son and his then-girlfriend made a huge feast at his house.  People dropped by, roommates who had stayed in town for their own reasons cruised by and partook, we all smoked a lot of weed, and generally had a good time.  My mother was not invited, because she has made herself unwelcome by her delight in shaming me in front of my son.

This year my mother decided to fly to my cousins and have Thanksgiving with them.  I was not invited.  My cousins, who suck up to her for their own reasons, did not invite me either.  That being the case, I felt no pangs of guilt when I accepted my son’s invitation, party of one.

Then my mother decided to cancel her Thanksgiving plans, for her own reasons.  Since she knew my son had invited me (party of one), she got herself invited to one of her many friends, who has a big family, so my mom could feel really angry that her own family had not invited her.

For some reason my son did not invite anyone else to dinner.  His own reasons, I guess.  It was a little weird having just he and I, especially since he was in one of his dark moods, brooding and irritable.  I really wish he would start taking lithium again, but he angrily rejects the diagnosis of Bipolar Disorder that, in his opinion, was foisted upon him as a teenager.

So that was Thursday.

I slept in my camper van, in the parking lot of his apartment complex.  One of his neighbors, who had clearly been watching out for me, accosted me as I headed out to go to bed, demanding to know if I was visiting someone in the complex.  Surely he had seen me exiting my son’s door…

My nerves were already frazzled from dinner with my glowering son, so I fired back,

“Why do you want to know?”

“Because I think you’re just camping here.”  Whoa, let’s just get some holiday spirit of giving on here, hey?

I wanted to say to him, “Listen, Mr. Nice Guy, even if I was ‘just camping here,’ there’s a whole fucking empty parking lot because everyone has gone elsewhere for the holiday.  And what are you angry at, anyway?”

But I didn’t say that, because there’s always the possibility that a poor unhappy fucker like that will call the police, and I was already tired and tense enough.  So instead I said,

“Well, I am camping here.  This (pointing to my camper) is my bedroom.  I’m visiting ____ in Apartment _____.  Would you like him to come out and speak with you?”

As it turns out, this unfortunate fellow has seen my son, who is a weight lifter and quite muscular and buff.  So the sorry sucker subsided, and allowed as how that would not be necessary.  I also subsided, went into my spaceship and slept fitfully, as people constantly came and went, car lights and porch lights flashing.  My PTSD surrounding cops blazed like a tiger in the night.

Friday.  I woke up feeling like shit.  Depression.  Again. Still.

Went in and stood under my son’s excellent shower for half an hour while he went to work for a while.

When he came back, I said, “Listen, I’m feeling really disorganized brain-wise.  Do you mind if I hang out till tomorrow?”

The minute the words left my mouth I saw the twitch in his face that said, Oh No, Not That!

“Um…listen, Mom, to be honest, um, I really need my space.”

My heart hit the pavement.  Then I noticed the spiffy outfit.

Date.

Yeah, I was glad he was able to tell me no, but on the other hand I wished he had seen fit to be honest and say something more like, “Oh wow, Mom, I really wish you could, but since I thought you were leaving today, I made plans.”  That would have sent me off with a smile and a lighter heart.

“Oh, that’s OK,” I chirped, suddenly feeling like I’d been handed the bum rush.*

He graciously allowed me to stay long enough to use his internet to find a campground.  I found one pretty close by, said my goodbyes, and lit a shuck out of there.**

____________________________________________________

I called my mother today, just to see how she is doing, and I wish I had put money on the bet that I made with myself.  I would have won.  She barely spoke to me, and clearly had her victim act all planned out, in case I called.  I laughed.  Couldn’t help myself: it was all too predictable.

Now for the Miracle part.

My sweet Belgian Malinois, Atina, is most certainly an angel.

She sleeps in the right-hand third of my bed.  The left-hand third is reserved for all the computer-related shit that won’t fit anywhere else.

The only thing I had the energy to make for dinner was a cup of gluten-free microwave macaroni and cheese.  While I was mechanically going through the motions of making it, Atina was busy doing something in the bed.

She was pushing my duvet into a nest-like shape toward the pillow.  No, wait.  She was pushing it with her nose, straightening the edge up toward the pillow.  I thought, you cutie, you are making yourself a nest out of my duvet, and you know that’s my spot in the bed!  But I did not scold her.  My heart was brimming with love.  She pushed and pulled at my pillow, fluffing it and making it into a nice continuum with my duvet.  Aha, I thought, now I will see you plump yourself down in my spot!

But that’s not what she was about at all.

When she got my part of the bed all fixed up to her satisfaction, she plopped herself down–on her side of the bed!  She had made my bed up–for me!

I dropped what I was doing and hugged and kissed her for a long time.  By the way she reacted, she knew that I knew what she had done for me…she made a place for me to rest.  She did it with love and care.  As I write this, I am lying in the bed my dog prepared for me.  Her breathing is soft and even as she sleeps in her own third of the bed.

“Friends may come and friends may go, but your dog will always be glad to see you.”

_____________________________________________________

*”The bum rush”: A term dating from the Great Depression and possibly earlier, when many out-of-work men went “on the bum,” going from door to door begging for food, money, a place to sleep…if the man of the house took offense, the beggar would be chased off the place–“given the bum rush.”

**”To light a shuck” means “to leave in a hurry.”  It has its origin in the  Civil War, when dried corn shucks were used as fuses for light cannons and field artillery.  Once you “lit a shuck,” you had to run like hell because not only did the big guns recoil (and could run you over), but also sometimes the cannons would backfire, shooting cannon balls behind instead of in front of them.  The idiom is still in use in the Southern and Southwestern United States.  It is one of my favorites.

 

 

And Now For A New Idea

Faithful Readers, I have a new idea I’d like to run by you.

After my last two posts, I don’t doubt that you are saying, Oh no, what kind of awful plan has she got now???

It’s not what you might be thinking.

I’m thinking I might get an RV and have it a bit modified for people with upper body disabilities…and go RV’ing around the country till I can’t do it any more.

I hate where I’m living.  The RV I would get will have a full bathroom, which I don’t have now.  It will have a full kitchen, which I don’t have now.  It will limit the amount of JUNK I can collect….I am a professional junk collector.

I want to go exploring in my favorite part of America: the Wild and beautiful West.  Maybe even find some way to volunteer at the National Parks, so I can camp there for free!  I can’t do trail duty any more, but I can answer phones…or “woman” the Information Desk and give out maps…I’m sure the National Park Service has volunteer gigs for disabled people!

Like I have said before, I don’t intend to let this disease get me like it got my dad…but neither do I want to just sit around this dratted uncomfortable place until I freeze in mid-air like Dad did!

If I can find a way to make the rest of my life fun and fulfilling, that will mean a lot.  Yes, Dad’s life was amazing right up to the point where his disease took over his life and he couldn’t do his magical art anymore.  Then he spent five miserable years dependent on others.  That’s when my life will go bye-bye.  Not doing that, if I can help it at all.

Dad lost his life–although his body stayed painfully alive–when he was 85.  My disease is progressing about 20 years earlier than his.  And my disease is in my neck, which his never was…and thus it threatens my whole body with the spectre of quadriplegia.  Not on the menu, if I can possibly help it.

When I think about cancer, I don’t think “chemo and radiation can help you live another (fill in the blank) months, years.  I am not interested in living with poisons and burnings.  Yes, I know that many of you are Cancer Survivors, and I totally applaud your courage.

However, I do not have the drive to live that others may have.  I welcome death.  I’ve had some amazing victories in my life, for which I am intensely grateful.  But now I am faced with two terminal diseases (Bipolar and Spinal Stenosis), and my chief aim is to enjoy the life that is left to me, and to go peacefully when the time comes….please God, let me know when the time is right so I don’t miss it and end up in a nursing home for years.

So.  I told you I wasn’t going to write about THAT, but it’s on my mind, so there you have it.

An RV would provide me with comfort, mobility, and FUN!  I’m getting revved about it.

What do y’all think about that idea?