Hands Down

Do you have two hands that work?

If no, you have my deepest sympathy.

If yes, I suggest you put one of them in your pocket or behind your back.  Got it?  Good.

Now go wash your hair.

This has been my life since the summer of 1993, on and off.  Mostly on.

I’ve had four hand surgeries since then: three on my left and one on my right.

I won’t elaborate on the proximate cause of the situations leading to these surgeries.  I may finally get around to editing and posting the story of Costa Lotta Jack, the evil Appaloosa who tore my wrist bones apart back there in ’93.  Now is not the time.

Let us begin with the premise that my left wrist was destroyed in 1993 by an evil Appaloosa named Costa Lotta Jack, which lead to my first wrist reconstruction a few months later.

That repair worked so well that I was able to relearn to play the banjo and fiddle.  Not the way I played it before: I lost a lotta wrist action in that fight.  Good enough to cut a solo CD that still tops the folk charts, although it still hasn’t paid for itself.

Six or seven years later, that repair broke down.  Another reconstruction.  Lost some more range of motion with that one, but managed to keep playing music once they pulled a couple of steel pins out of my wrist.

And so on until a year ago, when I had a big crash and burn from tripping over a barrier between two campsites in the pitch black new moon dark.  The hand surgeon in Flagstaff was sure it was a tear in the joint capsule, and the MRI with contrast demonstrated the same.

And by the way, my shoulder started hurting then.  And it seemed to have jolted something loose in the minefield otherwise known as my neck.

So began my love affair with Flagstaff, Arizona, home of many orthopedists.  Hallmark of a ski town.

I got tired of running to doctors after awhile, and decided that some benign neglect might do me some good.  Or you might say I was sick of hearing that I needed this operation and that operation.  Really burnt out, if the truth be known.

Off I went, tending to this and that family emergency.  My wrist and shoulder and neck still felt bad, but not as bad as running to doctors.

When I landed in Tucson for the winter, it made sense to make friends with a local orthopedist about my shoulder, and with a hand surgeon about my wrist.

I had my initial consultations taken care of, and a return visit to the shoulder guy for an injection into my subacromial bursa, which is a fluid filled sac in the shoulder.  It didn’t help.

Then, toward the end of January, I had a terrible fall that tore the shit out of my rotator cuff and did something bad to my wrist.

I went immediately to the hand surgeon, who scheduled surgery, and to the shoulder guy, who sent me directly from his office into the nearest MRI machine.

The MRI shows two full thickness tears in my rotator cuff muscles.  As a bonus, I split the tendon to my biceps muscle in two.

But I’m getting ahead of myself.

I had my latest hand surgery 8 days ago, I think.  I’m still a bit addled from all that has gone down, so if I get things out of order, that’s why.

I’m told that the surgeon came and talked to me after the operation.  I can’t remember anything, because I was waaaaaaaaay over-anesthetized.  That can happen, especially if the anesthesiologist doesn’t listen when you tell them there is a very big reason you resist general anesthesia.  Some of us need a much lighter hammer.

I had rented an Airbnb room in which to recover for a week, boarded Atina the Doggess, and settled in with my vaporizer and edibles (I don’t do well with opiates).  I hired people from a local home health agency to drive me to the surgery and back and go to the pharmacy and Trader Joe’s for 24 bottles of Trader Joe’s brand seltzer water.

That night, or maybe the following night, I got two phone calls, one from each of my guys.

Shoulder guy: “Well, you have two high grade tears in your rotator cuff muscles, plus your biceps tendon is split.  Other than that, your MRI looks great (except for the rough place underneath another muscle that shows it is getting squashed by something else).  You should be able to put off surgery for a few months…provided you don’t fuck it up again in the meantime.”

He didn’t use those words exactly, but that’s what he meant.

Next call was my hand guy.

“Um, how are you feeling?”

“Just peachy.  What did you find in there?”

Pregnant pause…then he said:

“Oh sweetheart….”

WTF, my surgeon is calling me sweetheart, and I want to know why.

“I’m so sorry.  I thought we were just repairing your joint capsule, but when I got in there with the scope I found that your triquetrum (one of the 8 bones in the wrist) was rattling around loose in the joint, no ligament, no cartilage, no blood supply…so I had to take it out.  Really should have done a first row carpectomy (procedure that removes a whole row of those little bones because once they’re fucked up they don’t heal), but I didn’t have a permission signed for that.   We’ll have to watch this carefully and maybe plan that operation for the future.”

Instead of bawling, I said (with considerable irony),

“Well then.  I suppose I’d better sell that new guitar.”

“Oh, no, no, don’t sell your guitar!  We’ll get you back playing!”

Nice one, Doc, but I’ve been around this block a whole bunch of times.  I didn’t fall off the turnip truck yesterday.  I know as well as anyone else what happens when you start taking out bones.  It’s a slippery slope.

I Got Carded!

And the good news is, I got carded for the first time in 32 years.

The State of Arizona, otherwise notable for refusing Daylight Savings Time, and for the Grand Canyon, and Tombstone, and Prescott, all splendid ideas–has seen fit to award me my Medical Marijuana card even though I’m not **yet** an official resident.

I think they took pity upon my sorry ass.

And they knew I needed it, because I am in a world of hurt.

My appointment with the Hand Surgeon arrived today.  I got to wait two hours, then saw his PA, who had filthy fingernails.

I find that utterly repulsive.  A health care practitioner MUST have clean fingernails.  Hell, I’m sure Doc Holliday had clean fingernails, even though he was a drunk, a gambler, and a sometime outlaw.

I even clean my own fingernails before I go to a doctor appointment.  When I was in practice, I not only cleaned them every morning before heading to the office, but also used a white nail pencil (which I have not seen in stores for years) under the tips, to clean them further and make them shine.

The PA was not in my life for long, however, as she took immediate note of the way I flinched and yelled “Ouch!” when she pressed on the place where it hurts.  I made it easy for her by showing her the place.

She left the room and returned with the actual hand surgeon, a very nice young man.  He extended his hand, I rose from my chair and shook it, we introduced ourselves by our first names, and he complimented my last hand surgeon on his fine handiwork and inquired how it was done.

“Pins,” I told him.  “He pinned the hell out of those little bones and told me never to move my wrist again.”

He laughed.  But that is true. 

Of course the surgeon had to manipulate my wrist some, just to get his own idea of what is fucked up wrong, so hours later the bitch is still throbbing.

Predictably, he ordered an MRI.  As a bonus, we’re going to have an arthrogram with our MRI.  Half an hour prior to the scan, he will inject some contrast material into my wrist joint, and the MRI will show where the stuff goes.  This will clarify what is ruptured.  I think I know.  I’d make a bet with my doc, but I think we’re both on the same team.

So, after getting all the paperwork done I walked out to the parking lot, stuffing down a scream, and let the Biggess Doggess out to pee.

Aha, there is my phone!  I knew I left it somewhere.

Three messages from the spine institute in Denver (thank you, friend who suggested this!).  Two of their spine surgeons have reviewed the imaging studies I sent them, and both are of the opinion that I need “decompression and fusion at two levels (of my neck)”, just the same as the spine surgeon here in Flagstaff. 

I guess I will be having a busy spring.

It’s hard to do this kind of shit all by myself.  I wish I had the money for hotel rooms and private duty nurses.  I don’t, so there will be some sort of arrangement with hospital security so I can stay in my van in the hospital parking lot for the hand surgery.  The spine surgery recovery will have to be in some rehab facility, ick.  And poor Atina will have her first boarding experience.  Ever since I’ve had her, she’s been with me every single night, even after her own major surgeries.  It will seem really strange not to have her with me, but since I won’t be able to care for her, I guess that’s how it has to be.

It was getting late by this time, so I drove back to the campground, still suppressing screams.  It upsets Atina terribly when I scream.  So I rubbed her head and ears all the way back, driving with my solidly braced up bad hand.  One thing about having a lot of orthopedic injuries, you get pretty good at bracing and splinting, and at driving with one hand.

Back at the old campground, I rummaged in my stash bag and found a strain of legal (I have my card, remember) cannabis called Blueberry Trinity, which I imagine might be named for the “Trinity” nuclear fission experiments.  Whatever.  I inhaled its vapors, then set to work on a few shots of whiskey.  No, not the best coping mechanisms.  Fuck a bunch of coping mechanisms.  I needed oblivion.

The phone rang.

It was my old boyfriend and now for 18 years telephone friend Dick!  That’s not his actual name, but I know he won’t mind.  I spilled my guts to him, which was just what I needed.  He must have got “the vibe” that I needed help!  We talked all the way through his dinner.  His wife put up with it gracefully.  She is a graceful person, and I’m very glad they have each other.

Now the intoxicants have pretty much worn off.  It’s time for Atina and I to take our pills and go to sleep.  She’s lying up against me, upside down.  I’m intermittently rubbing her tummy.  Guess I’d better take her out for the last pee of the day, and call it a night.

A Very Bad Day

Flagstaff, Arizona, is a magical place.  Even the KOA Kampground (a chain that I avoid like the plague) here bumps right up against the Coconino National Forest.  Everyone is nice (well, almost everybody), and it’s just incredibly cool to go to the grocery store and listen to families talking to each other in Navajo or Hopi.  And unlike the Mescalero Apache, who are sick of white people, the Native Americans and white people seem to get along just fine, even though the Navajo and Hopi got a really bum deal at first.  In my opinion, before Americans start getting all self righteous about Israel, they need to give back all the land they stole from the Native Americans.  And I am serious about that. 

Anyway.

I met my new spine surgeon for the first time today and had a set of xrays that were shockingly worse than they were two years ago.  My cervical spine is starting to look not like a spine at all, but like some random stick, bent in the wrong direction.

A new finding is that I have zero reflexes in my right arm, very little in my left.  Strength was 0/5 on the left and 1/5 on the right.  I guess that explains why I have to use two hands for a lot of tasks, and couldn’t open any sort of bottle even before I fell on my left wrist, which is getting worse not better even though I keep it in a splint. I see the hand surgeon on the 11th.

I showed the doc my tremor and told him about the muscle spasms and twitches, and that I was worried about spinal cord compression causing that.

He said I might have cord compression, but that it wouldn’t cause those symptoms or my weakness and lack of strength, but MS would explain those things.

I have been thinking that myself, but to hear him say it was like another nail in my coffin.

So he ordered an MRI and referred me to Neurology to investigate the MS angle.

By some miracle, someone had cancelled their MRI slot, so I was able to have it done this afternoon.  The MRI techs were nasty and snotty, which did not help my emotionally fragile state at all.  When a neurosurgeon tells you you probably have MS on top of your spine looking surgical, it’s harder to let snotty technicians roll off your duck’s back.

So when I got back to my van and found that Atina had helped herself to things in my toiletries bag, and shredded stuff all over the floor, the bed..I went nuts.  Apeshit. I screamed at her.  Threw things.  Then I collapsed on the floor and screamed and screamed and screamed.  Atina tried to help me, but I wanted none of it, so she lay on the edge of the bed trembling while I lay on the floor screaming.

Everything hurts.  I have a headache, which I’ve had all day, from high blood pressure.  I take the damn pills for it, but today they didn’t work.  My BP was 152/95 even after my pill, so god knows what it would have been without.

Tomorrow I have to make all sorts of appointments, neurologist, Neurosurgery recheck, RV repair because more components are shitting the bed; and all I want to do is sit in my new chaise and get wiped out on cannabis and benzos to counter the paranoia from the THC overdose.  I might still, if I can get enough done in the morning.

People, it was a very bad day, and I have a feeling it’s going to get worse.  I’m carefully thinking about where that red line is going to be, and how to arrange things.  I have the means.  I have no interest in “palliation.”  I have no one to help me.  I can’t stand to be around other people, like in a care home.  I can’t stand strangers in my environment.

I’m in constant pain, I’m exhausted all the time, I drop things, I fall.  It’s getting to be that time.  I’m winding down.

My Magic Wand

When I was in active Pediatrics practice, anxious parents used to ask me all the time, “When will this get better?  Will it get worse?  Can you make it go away?”  This, usually in reference to some unpleasant chronic condition like asthma or psoriasis.  My answer to them was always the same:

My Magic Wand is in the shop with my Crystal Ball.”

This usually provoked a crestfallen look.  But I do not lie, I do not dissemble.  I tell the truth even when it is not what anyone wants to hear:

“Your child has leukemia.”

“Your child has meningitis (because you staunchly refused to give him the vaccination against that--but I would never say that.  They will either figure it out or not, but I will not increase the suffering of an already stricken parent.)”

“Although we did everything in our power, we were not able to save your child.”  That was the worst, the one I dreaded the most.  Where there is life, there is hope, is a true statement.  There are conditions which are dangerous, which are usually fatal, but where there is life, there is hope.

But the outcome, in the end, is not in my hands and I cannot foresee the future: my magic wand is in the shop with my crystal ball.

And now that I am the patient, I juggle these things.  Some things about my diseases can be predicted, and some can’t.  I think sometimes the most distressing part of having a disease is the uncertainty of how it will turn out.

Take Ebola, for instance.  The media has whipped the fear-and-paranoia quotient to the moon.  People are starting to fear each other on the streets.  There is talk of people wearing masks in public places, even though it has been proven that in order to pass the virus via the respiratory route, like a sneeze or a cough, someone would have to be so sick that they would be on life support anyway, not likely to be in the subway station or the mall.

Will the virus take hold in other nations, or will it peter out the way Bird Flu did, the way the previous Ebola outbreak did?

Sorry folks, my magic wand is in the shop with my crystal ball.

I am fortunate to live in two countries where one is relatively free to chose one’s own doctors, for many things, anyway, if one’s health plan permits.  If I don’t like my doctor, I simply fire them and get another one.

Very fortunately, my shrink in America, whom I have been in a cordial therapeutic relationship with on and off since 2001, is a funny, pragmatic man, who is just as likely to say “I don’t know” as he is to say “Hello, how are you?”  –which he says in a jovial yet businesslike manner, because he REALLY wants to know how you are.

Thirty minutes later I leave his office both confident and perplexed, which is the way he means for me to feel.  I am not sure our plan of treatment will work.  Neither is he.  His magic wand is in the shop with his crystal ball.

He must be in cahoots with my therapist, whose office is just the other side of his wall.  I give her a hard time, saying, “I could do your job right now.  Right now!  All I would have to do is rotate the following exclamations:  “Really?  No!  You HAVE to be kidding. [silence]”  She did not quite find that funny, but I did and that’s what’s important, especially if your DSM diagnosis was changed, without your permission, from Asperger Syndrome to Autistic Spectrum Disorder NOS.

But in reality she is a really good therapist, because she does indeed give me both space and support, and cognitive feedback, which I truly appreciate.

She DOES have a magic wand in her office, but it’s one of those fake ones, you know what I mean, with some kind of thick fluid and glitter than flutters down through it when you upend it.  But crystal ball, no, she leaves that part up to me.

My family doc in Israel is a one-of-a-kind gem.  He listens to me; he is open-minded yet erudite, and he most certainly owns neither magic wand nor crystal ball, and if he did he would have to lock them away from his kids.

Now.  I want you to know that luck played very little part in my finding my Medical Knights and Ladies.  I fired many a therapist, and several psychiatrists, before I happened upon the ones I have.

The position of Primary Care Physician in America is still open.

My psychiatrist in Israel, bless his heart, had a severe psychotic episode and had to be hospitalized, and I don’t think he’s practicing anymore.  I hope not.

Far be it from me to be anti a mentally ill psychiatrist; my shrink here has Major Depressive Disorder, and he knows how it hurts.

But my Israeli shrink started showing signs of paranoid psychosis while I was in his office, which was in a basement room with no windows and you had to be buzzed both in AND out.  Oh dear.  Nothing short of Magic Wand was going to help him, poor man.  He was kind enough to renew my prescriptions for three months, giving me time to find out there wasn’t anyone else on my health plan who speaks English.

All of this is to say:  We just don’t know.  We don’t know what will happen to us in the next moment, let alone days, weeks, months, or years.

I was in a traffic jam going up a steep hill on a two-lane road once.  When traffic finally got moving it became clear that a huge tree, its roots sodden with the torrential Monsoon rains, had fallen atop a Jeep, crushing both it and its occupant.  She died instantly.

After watching my father wither slowly away over years, months, weeks, days, and moments, it was hammered home to me: I don’t have a crystal ball, and I certainly don’t have a magic wand.  But I want that lady’s tree-falling-on-vehicle sudden death.  I don’t want to fade slowly into more and more and more pain, up till the very last breath.  If only I could have that crystal ball, to see my death, and that magic wand to change it, if it isn’t one I can live with.

It Was Shoved Down My Throat

Ever feel like something was shoved down your throat?

Well, this Monday morning, something was.

Q: What’s the definition of a flexible sigmoidoscope?

A: A fiberoptic tube with an asshole at each end!

Ha-hah. Yeah.  So instead of that, I got the fiberoptic tube shoved down my throat.

First a perfectly inept nurse tried to start an IV on a vein that NOBODY ever uses.  Everyone knows it’s a shitty vein.  One reason is that it’s in a completely awkward and difficult to access place.  The other reason is that it always has a valve in it.  I still can’t believe she tried to use it.  But I didn’t prevent her from trying.  I didn’t say, LADY, NO ONE EVER USES THAT VEIN, FOR VERY GOOD REASONS, fer chrissake.  No, I didn’t say those things.  For one thing, I try to absent myself from all invasive procedures by going Somewhere Else.  You know, Somewhere Else.  That Place.  For another thing, I try not to piss off people who are sticking needles into my body.

Lord, how many times I have squelched the urge to say, “Gimme that goddam thing and I’ll do it myself, you blithering idiot!”  I think I have, once or twice, because, yes indeedy, I am perfectly capable of starting my own I.V. line and have done so.

But this time, after the blithering idiot had completely botched the job and sent the needle in one side of my vein and out the other, then adding insult to injury by actually sliding the catheter into my subcutaneous tissues AND STARTING THE INFUSION so that I bled like a stuck elephant, she simpered, “Oh, I think I’ll call someone else to try again.  I don’t want to beat you up any more.”  The bleeding imbecile.

The “someone else” was so horrified at the mess the Imbecile had made that she decided to use a baby-sized catheter on a baby-sized vein in my hand, which promptly blew up, looking like someone had pumped the back of my hand full of blue ink.  Oh well.

Then they wheeled me into the operating suite, where someone sitting behind me, who did not bother to introduce herself, slipped me a mickey.  As I felt myself slipping into unconsciousness I whipped around (well, maybe I sloshed around) and said “Who the hell are YOU?” and she said, “I’m a nurse.”  And I’m like, fuck, don’t they introduce themselves anymore, as in, “Hi, my name’s Candy, and I’m you’re nurse aneasthetist.  I’m going to be sending you bye-byes today.”  No.  They just slip you a mickey from behind, as another nameless creature feature sticks a gag in your mouth and then you remember nothing except for the man in the white coat breezing in just before you lose consciousness, informing you that he’s the doctor.  Would have been nice if he’d popped ’round while I was getting stabbed to death, just to say “hi” but I suppose that takes up too much time.

Next thing I knew I woke up with a prodigious sore throat, which I still have.  Seems the white coat was a little rough on the ol’ epiglottis, you know, that little thingie that flaps over to cover your windpipe when you swallow so you don’t get nothing down your goozle.  Damn thing feels like a baseball every time I swallow.  I ate nothing but ice cream yesterday, which felt mighty good but then I started thinking about the 15 pounds I’ve gained since September and switched to soup.

My arm is very colorful.  I had thought about taking a picture and posting it here, but I don’t want anyone to faint or throw up on my account so I’ll just briefly mention that it has the colors of a beautiful sunrise: dark blues fading into reds and rosy pinks.  There, that’s enough, don’t you think?

Oh, and why did I submit to this ordeal in the first place?  It all has to do with my body’s refusal to digest food without the aid of exogenous pancreatic enzymes, which means I have to take enzymes in order to digest my food.  So my gastroenterologist, who is very big into doing high-tech expensive tests when low-tech cheap tests would do just as well or better, ordered an endoscopic ultrasound of my pancreas and surrounding structures.  What a crock of shit.  I knew very well the results would be normal except for the gastritis I’ve had for years.  I managed to wrench the results out of the departmental secretary today, playing the “doctor card,” which comes in handy in certain situations.

So I’m back to square one, in which the gastro is going to say, “I told you it’s Only Irritable Bowel Syndrome,” and I will parry, “Then how come I don’t have ANY of the symptoms of Irritable Bowel Syndrome?” and she will reposte, “You don’t HAVE to HAVE any of the symptoms in order to HAVE it.”  And I will thrust, “How about you write whatever you want to on the “Diagnosis” line and just continue prescribing my enzymes, and I will come see you every six months so you can bill Medicare for a followup?”   Win-win, eh?