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.

Realization

This sudden and alarming loss of strength and control of my limbs, and even unsteady gait, combined with extreme discomfort in my neck and sometimes lower back, has me wondering what the next step might truly be.

I devoted all of today in researching what I have, and to my great surprise I emerged from the rabbit hole with a rabbit.

The rabbit has a name: Ehlos-Danlos syndrome, or EDS.  I arrived at this by filling out some standard forms that rheumatologists utilize, and found myself right in there amongst ’em.

This explains the extreme paper thin skin that tears if you use any kind of tape, Tegaderm, anything.  It tears off in sheets, splitting just at the level where the pain nerves are, and the wounds take weeks to months to heal, leaving horrid scars.  I have several scars from blood draw needle sticks that make me look like an effin junkie.

Speaking of which, I would fail terribly at being a junkie, because my veins have become fragile, like my skin.  IVs last minutes, if the nurse can even find a likely looking vein.

“That one is blocked from a previous disaster,”  I remark, and move my arm so that she’s not tempted to, “Well, that doesn’t matter, what YOU say.  Just watch me!”  Uh, no.

“That one has a valve in it (which makes them either clot or blow up)….”  “Tsk!” She runs her finger along the vein, watching it collapse and fill again.  OK, score one for the annoying patient!

“That one rolls terribly,” I observe.  “It’s good to hold it in two places so it won’t try to get away from you:-D” humor is always good, yes?

She snorts, throws down her nitrile gloves, and stomps off muttering about sending someone else in, this is over her head.  Well done.

Then there are the veins themselves.  I do not know how, first of all, how vascular access could be accomplished, for purposes of surgery.  And I am not at all sure of the wisdom of pushing and pulling at structures like the arteries in my spinal column, or even my jugular vein and carotid artery.  I don’t want a stroke from a leaky artery or a blood clot from a stressed out vein. 

So that leaves the question: am I even a surgical candidate?  And if not, what can be done to keep me walking and talking and writing on this touchscreen with one finger?

As I was wrestling with my nightgown it occurred to me:

My goal is to learn my deepest essence.  I like who I have turned out to be, with some notable exceptions. 

And I’d like to devote time to really listening deeply, and having understanding of the spirit that was injected into this crumbling body.

If I can understand that, it will help me to manage the coming events, whatever they turn out to be.

Two is too many

It seems that I have been putting off writing this post until I can’t anymore.

The reason I have procrastinated so long is…well, there are two reasons: fear, and pain.

I came to Flagstaff several weeks ago in search of a hand surgeon.  I took a nasty fall over a log, as some of you might remember, and after waiting a suitable number of days to make sure it wasn’t just sprained, sought care at an orthopedic urgent care facility. 

There I met a young, arrogant, and completely disagreeable orthopedist, who humiliated me in numerous ways until his assistant hipped him to the fact that he and I share a first name, to wit: “Doctor.”  Then he became all cozy and collegial, remarking on the skill of the last hand surgeon’s handiwork, as we gazed at my Xray together.  I was musing how overexposed the film was.  He was burbling away.  I had dissociated long since and have no idea what he said after that.

But I picked up the hand surgeon’s card on my way out, and spied the spine surgeon’s as well.

The chirpy receptionist volunteered to make me some appointments if I needed them, right there on the spot, so I took her up on it.

Let’s see, hand surgeon, since that came first.  And my poor arthritic shoulders were killing me, especially after the recent acrobatic stunts.  I’d have an appointment with the non-interventionist arthritis doctor, please. 

And then there is my spine, bane of my existence since 1985.  A couple of lumbar discs ruptured back then.  In 1987, emergency surgery for a ruptured disc in my neck.  Oh, and that rupture occurred on the first night of my internship.  I drew call my first night, of course.  “Black Cloud.” 

Over the three years of my residency I would go on to rupture at least five discs.  The spine surgeons threatened me with putting metal rods on both sides of my spine.  I demurred, and opted for a custom molded hard plastic exoskeleton type of thing that extended from armpits to groin, to be worn 23 3/4 hours per day.  Fifteen minutes to shower, then back into the Plastic Maiden.

In the intervening 30 years, my spine has had its moments of freedom from having to drag me into its consciousness.  Curiously enough, my best years were when I had horses and rode daily.  The gentle rocking motion kept my spine well oiled, and the occasional eruption of a bucking episode provided any needed adjustments.

Then I got Rolfed by the former Captain of the Venezuelan Olympic Women’s Luge Team.  She was gigantic.  She was good.  It was excruciating.

My back didn’t dare go out if it meant going back to Alejandra.

After I returned from Israel to be with my father in his last years, my neck began to bother me enough so that I went to see a Physiatrist.

For those who are unfamiliar, a Physiatrist is an M.D. or D.O. who is trained in evaluating and treating musculoskeletal disorders non-surgically, with things like hydrotherapy and massage.  Sound good?

Actually, I did not choose this person specifically because she would be the most likely to send me to a Turkish Bath; it was simply a matter of Cut vs. Not-Cut.

Dr. Not-Cut did not send me to the Turkish Bath, nor even to Physical Therapy, but packed me off to her partner who does one thing exclusively: epidural injections.

Now, while I’ve had many a needle inserted into my spine at the lumbar region, I have never permitted such an intrusion into my neck, for the simple reason that it’s easy enough to prick a blood vessel by mistake, which can be problematic in the lumbar, but catastrophic in the cervical, because there is simply no room for anything like a blood clot in the spinal canal of the neck.

I went for it, purely because I couldn’t look down to tie my shoes for the pain.  My head felt like it was going to fall off at any moment, and at times I felt like beheading myself just to get it over with.

The procedure was terrifying.  It was painful.  It didn’t work.

Fast forward through several medication trials and much condescension on the part of Dr. Non, and at last I had an appointment with her Nurse Practitioner, who wisely prescribed a muscle relaxant, voila.  And a special hardshell collar to keep my head from falling off.  A wise and practical woman…And she even snuck me a small Rx for some tramadol, miracle!

And until the tumble over the log incident, that’s been keeping my neck pain down to a barely noticeable hum. 

Post-log-jam, things started kicking notches up the Pain Scale until I was hovering in the 8 range and started using my beastly hard surgical collar again.  This thing provides a tiny bit of traction, and it gets rid of the feeling that my head is falling off, but it digs cruelly into my flesh and is no fun.

I did not wear the collar to my appointment with the Instant Ortho Clinic. 

Two things you must never do, if you go to any kind of emergency services place:  do not wear a cervical collar, and never never never reveal that you have a mental illness; otherwise you will be instantaneously branded as a drug seeker, and no one will ever listen to you or even notice the bone sticking out of your leg at a crazy angle. 

And there is a third one, I have discovered, to my dismay:

Don’t be elderly.  You won’t count.

Time passes, and I get my turn with the Arizona Spine Specialist Dude, very highly Ivy League Specialty Boarded And Fellowshipped, all very nice to know.  Confidence.

He seemed like a nice chap for a surgeon.  Asked me why I was there, seemed to listen, actually examined me and discovered, dismal dismal discovery…I have lost virtually all muscle strength in my left arm.  I have no reflexes at all in my right arm, and abnormal ones in my left.  This must be why it takes me two hands to get my coffee cup up to my face.

It is no longer an issue of mere pain management.  It is an issue of preserving what function remains to me.

I need surgery.

The MRI could have looked worse.  It also could have looked better.  What is clear, is that the degenerative disease is crunching my spine like Pac Man.

I have had two appointments with the Spine Surgery People.  The first was with the actual surgeon, whom I liked, who treated me respectfully and did a good job of hitting the diagnostic nail on its head.

The second appointment was with the Physician’s Assistant.  I have no confidence in Physician’s Assistants, for the simple reason that in my opinion, there is some difference between the education of, for instance, my new Spine Surgeon, who had (after his Bachelor’s Degree) 4 years of medical school, 5 years of residency, 3 years of spine fellowship, and assorted certificates; whereas, a Physician’s Assistant has a grand total of 26 months of post-college training: the equivalent of a Master’s Degree, very nice, but not enough to develop much clinical experience.

So, with some trepidation, I met with the PA to go over my MRI results.  How could a person with so little training interpret advanced imaging and recommend treatment?

I was relieved to find out that she is, in fact, operating as the surgeon’s assistant and not as an independent entity, as so often happens today.

She had been thoroughly briefed by the surgeon on the MRI results, conveyed them to me, and explained the recommended treatment: spinal fusion at two levels.  She explained how this was done, and showed me an example of the titanium plate that would be installed, to stabilize things.

Any questions?

Uh, well, yes…what would happen if I opted to do nothing?

Well, of course, your disease would progress and those nerves would continue to lose function….

Oh.  Yes.  Definitely.  I see.

Any questions?  She gives me the crisp smile that is the equivalent of shooting one’s cuffs to glance at one’s watch.

Not at this moment, I tell her, but I’m sure I will have.

All right then, just call and let me know what you want to do.

We rise, shake collegial hands…

Several days later I realize I remember absolutely nothing about the visit.  Except the part about Surgery, and Fusing Vertebrae, and Possible Side Effects Including Quadriplegia…shit.

I called and left a message for the PA.  Two days later, she returned my call.

Yes, what was it?  Very snappish.  It’s five o’clock, poor thing must be hungry and tired…shit, there I go again making excuses for other people’s bad behavior. 

It’s that I have some questions about the surgery.

–I explained that in the office.  We place a tube down your windpipe, pull your windpipe and food tube to one side, and…(what is going on here?  She has my chart in front of her.  Why is she using the sixth grade description garbage?)

Yes, thank you, you did explain that part.  What I want to know is where, exactly, you place the titanium plate.

Exasperated sigh.  Again, with feeling:

–I told you, we move your windpipe and food tube…

Cheezes K. Reist, woman.  I want to know whether the plate is placed LATERALLY or IN THE MIDLINE???

–Midline.

Good.  How long will I be in the rehabilitation hospital postop?

–That depends on you.  She drops the phone.  Oh sorry.

How long until I am able to drive?

–That depends entirely on you.

What does that mean, exactly, please?

–That means however long you are on pain medication.  Could be two weeks, could be six weeks, depends on you.  Each patient is different.

Ah, now I have some useful information: they give you pain medicine postop!  What a good idea.

It really was like pulling teeth.  Look, if someone is going to do violent things to my neck bones, I want to know the details.  All of them.  Not the sixth grade version: for better or worse, I am a physician, and I need DETAILS.

So now I am spooked, very spooked, by the fact that the surgeon’s right hand woman is sidestepping badly.  It’s bad enough that I have to make a decision of this magnitude, without this person giving me the power trip.

I know I need the surgery.  I’ve investigated the surgeon and he comes up kosher. 

But what about this other person on his team, who seems to have enough power vested in her that she could cause me to suffer?

It happens that there is a branch of the Mayo Clinic in Phoenix, several hours from here.  I think I’ll mosey over there and see what it’s like.  I don’t believe there will be huge changes in my condition in the near term…I hope.  Maybe they have some other, brighter ideas.

And then…there is the first appointment with the Hand Surgeon to look forward to, in a week or so.  Something is very wrong with my wrist, because of the fall.  Very wrong. 

I wish I could get someone to order the MRI of my wrist BEFORE I see the Hand Surgeon, to save time.  I think I’ll call his office tomorrow and ask.  Can’t hurt.

I have waves of feelings of futility.  What is all this for?  The wrist, yes, that’s an injury and must be repaired, if possible.  But what about the spine?  I watched my father’s spine degenerate until finally he was literally a helpless bag of bones.

I must ask this surgeon, whose opinion I respect: what am I looking forward to?  How long will it be until another unstable section of my spine needs to be fused, and another, and another?  How much of this can the body endure?  Am I really buying time with this?  What sort of quality time?  How long till the wheelchair and the nursing home?  I need to know.  I will make another appointment.

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.

When Is Enough Enough?

I lived with my father as he slowly died in increasingly excruciating pain over years and years.  When my mother was home, she forbid him to say, “I hurt,” and she withheld his pain medication “because it made him sleep all the time.”

He slept all the time anyway, because that was the only way he could reduce his pain level.  He groaned in his sleep, though.

Unfortunately, I have inherited the disease that caused his pain: degenerative joint disease, with the added agony of degenerative disc disease.

For the past few weeks the combination of mental and physical pain has me close to the breaking point.  I can’t take opiates because they make me itch, and my skin condition makes it impossible to scratch without tearing off pieces of myself, leaving a wound that takes a month to heal.  In addition, the docs in this part of the country are so afraid of opiates that they refuse to prescribe.  So I’m stuck with using mj, which is somewhat illegal here.  But I have things to do, so I can’t use enough to really relieve the pain, because that would put me in bed.  So I’m screwed.

The psychic pain–there are no words to describe. 

Part of it is endogenous.  Part is environmental–the part of the country I’m stuck in at the moment is grey and damp, two things I can’t stand.  The sun came out for five minutes today and it was balm to my soul.  I’m out of here just as soon as my task is done.

My task is to clean my stuff out of my father’s old studio, where I lived for the last four years of his life.  It took me four days just to clear the spiders out.  Now I’m sorting  through things, making three piles: throw out, because of damage from humidity; give away, because I’m not going to use anymore; keep.

Just to to the situational depression off, Atina is not doing well.  This week her labs were worse.  Her kidneys are getting leakier.  They’re no longer holding her blood proteins in her blood.  They were leaking protein before, but her serum proteins were holding their own; now her kidneys are leaking more than her body can produce to keep up with the loss.

Today we took a short walk in the woods.  It’s been raining for weeks, and since it had stopped this morning (but is back now) I thought it would do us both good to take a walk.  But she wasn’t interested in playing in the creek, and although she carried her ball, she didn’t want to play with it.  And she simply collapsed halfway through where I wanted to go, which is only half a mile on flat ground.  I had to sit down and wait for her to recover.

Now she has fallen off the driver’s seat, which is where she normally sleeps, and is passed out on the floor where she landed.  It looks like she’s nearing the end of her sweet life.

When will my misery end?

I want to stay alive until my son finishes his Ph.D in May.  I want to see him off on the next part of his journey.

He and I have talked about what we lived through with his grandpa, and that I have the same illness, with the added fun of bipolar.  We have had the talk about what will happen when I can’t stand the pain any longer.

It’s one thing to talk about it, and another thing to live it.  I know he’ll survive.  But losing one’s mother is a terrible thing.  And living in agony is a terrible thing.

There will come a tipping point.  I keep on living for others: for my son, for my dog…should I get another dog?  Can I live that long?

In three years my income will be drastically reduced, to the point where I literally can’t live.  I guess that will be the end of the line, if it doesn’t come sooner.

Can’t Do A Thing About The @#$%^ Weather!

When last I posted, I was lamenting the fact that the weather was dashing my plans to make a quick run to Michigan and retrieve my new RV (don’t look at the price, I got one that was a demo and much MUCH cheaper, but exactly the same thing!).

As it turned out, I couldn’t have gone anyway because the flights got so snarled up due to heavy snows and ice storms that no one was flying anywhere.  Up here on my mountain, there were a few inches of snow topped with a crunchy layer of ice.  No way I could even have made it to the airport, so I canceled my flight last night.  That turned out to be the wrong thing to do, because since I never checked in for the flight, I had to pay for it even though it ended up being canceled.  Go figure.  Better than being stuck in the damn airport for who knows how long, anyway.

But never mind the flight–my most urgent issue with the weather has to do with my arthritic joints.  Every time I move my right shoulder it goes “clunk.”  Sometimes the clunk is accompanied by a grating sort of pain, and sometimes not.  I have a touch (OK, maybe more than a touch) of fear when that happens, because my dad (may he rest in peace) had similar clunks that just got worse and worse.  I’m sure that’s what will happen with mine, because so far I’m following in his arthritic footsteps.  Too bad I didn’t inherit his artistic talent and drive to make art, along with the arthritis!

Last night was a busy one as I searched for a comfortable position for my arthritic neck.  No rest for the weary.  So today I’m yawning.  I hope I’ll get some sleep tonight.

I can’t take most pain meds, as they either cause me to stop breathing or to itch.  I don’t know which is worse.  If I stopped breathing suddenly, that would make the pain go away, but from prior experience I can tell you that the road to apnea is fraught with much wheezing and gurgling.  I would probably panic and make use of the dreaded Epi-Pen, the epinephrine auto-injector with a needle the size of an elephant’s trunk. Then I’d be back at square one, except now with a large bleeding hole in my thigh.

So I’m ingesting as much turmeric as I can stomach, which does help, and slathering my homemade Frankincense Oil concoction all over my shoulder and neck.  My hair is greasy with it, but since I can’t get down my icy dirt driveway and no one can get up it either, I have no worries about being seen with straw-hair.

I am grateful that the power has stayed on, and the propane seems to be holding out.  I got a $600 delivery just before it precipitated; but then the temperatures dropped into the single digits with winds that blew off part of the roof of my shed, so I have no idea how much fuel I have left.  I’m not going out to the tank and risking busting my arse on the slippery stairs.  The salt I spread before the storm merely melted some of the snow; and it froze back up, creating a skating rink on my stairs.  Fuck it, I say.  I turned the heat down to 65 and put on another layer of silk underwear.  That’s the best, I’ve found, because it adds warmth without bulk and you can layer it without feeling like the Michelin Tire Man.

michelin

 

I’ve been using my time somewhat productively.  For some reason, even though I spend most days holed up away from the world, for the past couple of days I’ve been noticing what a horrid cluttered mess I live in. It’s actually bothering me.

Even more astonishing: I’ve been doing something about it!  Going through piles of papers–I am ashamed to say that I am finding things in my “action necessary” pile that date back to 2013…sigh…I need a personal secretary.  A volunteer, because after the RV I can’t pay anybody.

I do still have a little whisky, though, so at leastI can offer a bit of merriment in the evenings.  Alcoholics will have to make do with tea.  I have a lot of tea, ranging from strong black stuff to the delicious mint I’m sipping now.  That’s how it goes around here: tea in the daytime, whisky and smokes at night.  I’m single and I do what I want!

And now it’s time to get back to reading my mail from a couple of years ago.  Who knows, there could be a check for $50,000 hiding among the junk mail!  My luck, it would have expired, like some of the coupons and offers I’ve already unearthed.

Oh shoot, I can’t worry about that.  My neck hurts too much.  Did I show you the excellent hard shell bionic brace the spine people gave me?  No?  Maybe next time.

I can’t quite tell which hurts worse, the brace cutting into the back of my skull, or my neck without the brace.

But it looks really cool on.  That’s what I used to tell the fancy ladies who came into the Michigan Avenue high fashion boutique I worked in, the winter quarter I had to take off from undergraduate school in Chicago, to make money for tuition: “This Armani is a fabulous piece.  The rack doesn’t nearly do it justice.  It looks incredible on!”  Then once you got it on her, of course it needed the belt, the bag, the necklace, the earrings–accessorize!  That’s where you made your money, the accessories.

So I have developed an entire line of accessories to go with the Amazing Bionic Neck Brace–scarves, mostly, because that’s really all you can do with a neck brace, but since I have a vast collection of scarves and hats, it comes out looking rather…surreal, like an alien sister to the Michelin Tire Man.

Unfortunately, or perhaps fortunately, I got fired from the Michigan Avenue Boutique (right across the street from Tiffany’s!) because I couldn’t sell water in the desert, let alone high fashion when I myself owned a total of two outfits, very worn and tatty.  Now I have piles of clothes.  They are lying around in laundry baskets littering up the place.  Most of them are also falling apart. Some date from the 1980’s when I was three sizes smaller.  “Oh, maybe I’ll get back into them someday,” I think to myself.

Between you and me, I rather doubt it.  Maybe I should make a pile to take to the resale shop.  But how can I part with them, when each one holds so much history?  This is the shirt I wore when we went to the Grand Canyon.  This natty pair of slacks is the one I wore on my first date, two husbands ago.  Never mind that they only fit up to my ankles.  Now that I am eating healthy food (after I finish this bag of potato chips), it’s possible that…oh darn, I’ve ripped them!  A whole chapter of my life, gone!

I must get back to the pile of mail.

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?

The Tipping Point: So Long, Able Body

It’s not here yet.  I’m not there yet.  But it’s getting closer.  I have to stay alert, lest it overtake me like it did to Dad, and leave me too crippled to decide my own fate.

That’s what happened to Dad.  It happened over a period of years.  I could see it because I lived far away, and when came to visit every 3 or 4 months, I could see the changes.  But one day, or so it seems, he was frozen in thin air.  His body had just frozen.  He could walk, for a while, with a cane.  His hands would not cooperate enough to operate a wheelchair, so he shuffled it around using his feet.  It was good exercise, I thought.

He tried to keep writing–he was a wonderful man of letters–but his pinched nerves refused to work his hands.  It cost his soul a lot, not to be able to write his memoirs.  (No, he wouldn’t do all the alternative things to physical writing.)

Then one day his legs stopped working.  I think he had a stroke.  He had lots of them, and caused him to have difficulty speaking, kind of like Moses, only different.

These few words about Dad serve as a preface for what I am about to tell you.

I have been having excruciating pain in my neck, due to arthritic vertebrae.  The holes in your spine where your nerves branch off your spinal cord and end up moving everything and feeling pain and whatnot–those holes that belong to me are getting calcium deposits on them, which is squishing and poking into the nerves in my neck.  Plus, the spinal canal (you know, the canal your spinal cord runs in–helpful, ain’t I) in my neck is getting narrowed, squishing the spinal cord itself.  I guess that’s why my arms ache and tingle all the time.

Today I drove the hour-and-a-half to see a nurse practitioner at the spine clinic where I get things that so far have not helped, like an injection of steroid stuff into my neck (that was fun) to medicines that allow me to sleep for three days at a time between doses.  Who needs pain meds when you’re fucking asleep?

For the past month or so my neck has been killing me to the point where bending over to pick up something on the floor gives me a jolt of pain, 8-9, sometimes 10 on a 1 to 10 pain scale.  It’s all I can do to hurry over to the bed and pack myself in pillows so I can’t move.  After a while the pain lets up, but not all the way–enough so I can get up and take some acetaminophen.  I don’t do opiates like Percocet, because they make me itch.  Every once in a while if nothing is helping–immobilization, hot packs, arnica oil, CBD oil–I’ll take one of my carefully hoarded Tramadol, a semi-synthetic opiate that relieves my pain just down to the barely tolerable level without making me dizzy or itchy.

So I saw the nurse practitioner at the spine clinic, and unlike the actual doctor of the clinic, the nurse practitioner had some very good and practical suggestions, like physical therapy with massage and electrostimulation, and a hardshell neck brace for when I have to do anything.

Since she seemed to know what she is doing, I asked her point-blank: what is the natural history of my disease?  Us medical people call the usual course of an illness to be its “natural history.”  I like that, because I have always loved Nature, and have been an avid Naturist–no. no, I mean Naturalist–all of my life.  So I asked her about the natural history of my disease, and she said “Not good.”

“What do you mean, “not good”?

Well there was a point where surgery–

“Surgery?  What, they take a Dremmel (an all-purpose engraving and grinding tool) and ream out the foramina (holes where the nerves pass though)?”

Yes, in fact.

“How good is the surgery?  What’s the success rate?”

She shakes her head.  Not good at all, she says.  About like lower back surgery…….which stinks.

But, she says, you might consider it when your hands get too numb to work.

My whole body, including my mind and soul, was numb as I walked out to the parking lot.  “When,” she had said.  Not if.  When.  I kind of thought that’s what’s in store.  My left arm, the one where the nerves are more severely damaged, “goes to sleep” quite a lot, and it aches and tingles pretty much all of the time.  It’s definitely progressing.

And then we come to my right shoulder.  The end of my collarbone that attaches to another bone in the shoulder is so gnarly with arthritis that my last steroid shot not only did nothing, but the difficulty of getting the needle into the joint (because the joint is almost closed up) has made the whole thing worse.  I have constant pain and limited mobility, and probably will end up having the end of that bone sawed off, which is supposed to restore mobility.

I have firmly and completely decided that I am not, God willing, going to let myself go the route my father went, completely dependent on others for years.  And unlike Dad, I don’t even have anyone to care for me should I be suddenly a body with arms that don’t work.  I would be in a nursing home until I died.

I’m watching very carefully for that tipping point, the one between independence and dependence, and praying it doesn’t sneak up on me.

As one of my Physical Medicine professors used to say–he was in a wheelchair due to MS–everyone is TAB–Temporarily Able Bodied.  And so it is, with me, anyway.

I used to love to swing an axe and split wood all day long, or take on an unruly horse, change a tire on my 3/4 ton Dodge Cummins Diesel truck…no more of that for me.  I had to trade the truck in for an easy-to-drive car.  My hands only hold out for so long at the keyboard before they seize up and I have to stop.  I can’t play my banjo anymore.

This is me playing my 1897 Fairbanks & Coles fretless banjo in 2005:

 

Life is getting less and less attractive to this formerly physically active person.  I spend virtually all of my time in my recliner, which is the only place my body doesn’t scream at me.  Hell, my place has not been vacuumed for over a year, because I can’t look down or look up or lift anything over two pounds.

It’s getting closer.  I have to be careful not to miss the tipping point.

 

When Does Life Become Unlivable? Thinking of Frida

Dearest Readers, rest your minds, I am not there yet.

Today is rainy and soggy.  The ground is thawing out in our Spring Thaw, which is a prelude to actual Mud Season.  I grew up mostly in New England where there is a time of year called Mud Season, generally starting the end of February and going on and off through March.  It’s a beastly time because everything from horses to tractors–not to mention cars and pickup trucks–gets bogged down in the mud.  You can’t get any “purchase” (traction) because under the foot-and-a-half of mud is the frost line from the winter, which will stay frozen even into May, as any New England gravedigger will tell you.

What this weather means for me is misery.  My hands hurt.  My hips hurt.  My neck is even now packed in pillows so I don’t forget and move it.  Et cetera, ad nauseam.  Oh and my asthma is suffocating me.  Go away, damn it, and let me just LIVE!!!

I saw my orthopedist this morning for another cortisone shot into my right shoulder.  Unlike last time, when the needle slid in so easily I didn’t even feel it, he had to do quite a bit of wudging around till he was able to get the needle into the joint.  It hurt.

I remarked on this, in a casual tone, like this:  “Fuck a duck, Doc, what the hell are trying to do to me???”

Actually I did not frame it in those terms, more because I know that all 6’5″ 300 lb of him are made of good nature and kindness–he and his saintly wife have, on top of their own eight children, adopted eight more, all of them older children who needed a good home.  Even if he wasn’t on the short list for sainthood I would still try to maintain a modicum of dignity and say something more like, “Sonofabitch, Doc, that hurts!”

He grinned and mentioned casually that I am certainly going to need that shoulder operated on at some point, as the joint is proliferating with calcium deposits that will need to be “scraped off” (oh, I don’t like the sound of that!) so they don’t tear up the muscles.

Here my vision goes blank and all I can see is my father lumbering along with his elbows stuck out to the sides like a chimpanzee, because both of his shoulders had frozen up….eventually becoming bone-on-bone.  He was literally stuck, couldn’t do anything with his hands–and he was a ceramic artist.  Hell on Earth.  And it didn’t stop there.  The arthritis ate his spine, just like it’s been slowly but surely eating mine since the 1980’s.

I had emergency surgery on my neck in 1987 for a ruptured disc that was pressing on my spinal cord.  Over the next 3 years I ruptured 4 more.  The spine surgeons proposed installing steel rods on either side of mine spine–no thanks!  I’m a dancer, a horse-and-dog trainer, a hiker, an aspiring Yogini.  A rigid spine does not suit my lifestyle.  So I spent 12 months in a Minerva Jacket, which is a hard plastic shell that the brace shop guy molded directly to my Stockinet encased torso, from just below the armpits to just above the groin, so that I could kind of sit.  It had Velcro fasteners in front.  I was to be encased in this walking tomb for 23 3/4 hours a day–with 15 minutes off to bathe.  I admit that I had to take the damn thing off at night.  Nobody could sleep with that thing cutting into your skin no matter how many layers of cast padding, etc., they fixed up for me to try to make it more comfortable.  I even coaxed the brace shop guy (“You have a perfect hourglass figure…!  He crooned, while I was immobilized in plaster yet again…stupid sod, I thought, only worse) into punching hundreds of 1 cm holes in the thing when it got to be summer and I was overheating in it.

Yah.  I spent that entire year standing up 120 hours a week–my work week–because the tension on my spine from sitting down sent the nerve pain all the way into my feet, and all the way into my hands.  But I soldiered on.  I refused to let the pain stop me.  I was young, and had the iron will that sustains my people.

Look, I follow a lot of people who have it much worse than I do.  Much, much worse.  And they keep right on living, kvetching now and then as is their right.

But I am staring into the face of a dilemma, which is:  I can’t work if I can’t look down.

Say what?

I can’t work if I can’t look down.  Not at my regular streams of income, at any rate.

I had to give up practicing regular medicine, not exclusively because of my brain, which wasn’t doing so well either but got right-side-up very quickly once I got the proper diagnosis and the proper meds, but mostly because my hands gave out due to whatever it is that is eating away at my connective tissue.

So I relied upon my acupuncture training.  Palpating meridians and slipping needles into the right places takes no strength at all.  But damn it, the last few treatments I’ve done, I swear I’ve squawked as much as my client!  I can’t look down without incurring an acute, unremitting ache that spreads into my shoulders and down my arms.  Nerve pain.

Writing.  I don’t sell much yet, but then I haven’t made much of an effort.  I get going with writing and at some point my hands seize up and won’t work at all.  I am experimenting with Dragon Dictate.  It is a pain in the arse, but many people swear by it (I swear at it, cliches be damned!).  I’m starting a proofreading and copyediting business.  That should be a good income stream, if I can market it successfully.  There must be a way to mark-up copy using Dragon or something, right?  At least I can get my computer at eye level.  God, I can’t stop thinking about Frida Kalho.

Money.  At the moment I’m fine.  I made one single good investment in my life, which sustains me now.  That stream of income goes away the moment I turn 65, if I make it that far.  I’m socking away as much as I can, but one little bit of extra expense can throw me seriously in the hole.  It’s unsustainable.  I have to find another way of supporting myself.

This is where the equations meet.  I cannot live as an impoverished cripple.  Please do not play the “Oh, no, you’re going to be just fine” game.  I get that enough from people I live around.

The truth is, I am not and will not be fine.  I have two progressive diseases, and if one doesn’t kill me, the other will make my life a living hell, just as it did to my father.

Dad didn’t want to live like that either, but he got taken by surprise.  It was as if he woke up one morning mostly paralyzed.  He was too bunged up to even take his own life!  So he lived another 5 years in unrelenting pain, totally dependent on the kindness (or unkindness, as the case often was) of others.

When we were alone he would ask me, “How much would it take?”  He was referring to his insulin: how much would it take, to take him out of his misery?  I could not, would not tell him.  He would smile sadly, saying “I know you can’t tell me.”  And we would change the subject.

Gentle readers, there will come a time when those two lines intersect: the downward spiral of my health and productivity, and the linear decline of my ability to sustain myself with food, shelter, medicines, and everything else one needs.

No.  I do not want to enter a nursing facility.  Neither do I want to be dependent on others, which is convenient because there ARE no others to be dependent upon.

I do not want to be locked into a crippled body the way my father was, until he died an excruciating death, screaming out his last hours on earth through blood-filled lungs.

I pray that I will know the right moment.  I pray even more that if there is a Deity, that he/she/it will take me out of this life before I have to make that tough decision.

Pray with me now, dear readers.

Pray that I get to dance at my son’s wedding.

Pray that I get to hold my first grandchild.

Pray that I get to have a sweet, gentle kiss of Death, and go Home before I have to make that tough decision.

Frida’s last diary entry, the night before her not-entirely-accidental death, went something like this:  “I hope my end is joyful, and I hope to God never to return.”