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?

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.

Close Encounter With The Mind Of A Narcissist

Dearest Readers, those of you who have been with me for some time are aware that I am an ACoN, which stands for Adult Child of a Narcissist.  The Narcissist in my life is my mother.

I have never understood her way of thinking, and she has never understood mine.  Therefore, our relationship has always been superficial and unsatisfactory on both sides.

Narcissists, by definition, are unable to think outside their own box.  They are the center of their own universe-no, the Universe. Anything negative that happens is someone else’s fault. Positive things, on the other hand, are clearly their own handiwork.

They thrive on praise and flattery.  The latter is as good as the former.  Sincerity is not an issue, as long as the adulation is centered on themselves.  They will work hard to achieve success and status, for the purpose of feeling important, and hopefully getting publicly honored.

Narcissists see their children as reflections of themselves.  The children are expected to bring praise and adulation to their narcissistic parent.  They must succeed and excel in academics, accomplishments, and anything that reflects well on their Narcissist.

A Narcissist expects, no–demands, respect and admiration from her children.  If she does not get it, she will retaliate with all kinds of abuse, be it physical, emotional, psychological, and sometimes even sexual, if she needs reassurance that she is still beautiful and sexy.

Somehow or other, I ended up with not one (which would have been enough, dayenu*) but two narcissists in my life–my mother, of course, and her sister.  As often happens, I was much closer to the sister when I was growing up, and her two children were my mother’s darlings.

Time has passed and the sisters have suddenly found themselves in the category of the very elderly.  My mother is 88 and her sister is, I believe, 91, although that side of the family has no compunctions about shaving a few years off their true age.  They tend to live to over 100, God help us, so what does it matter, really?

It doesn’t matter in itself, but they also don’t mind stuffing their purses with the packets of sweetener, soy sauce, ketchup, mayonnaise, that populate the tables in various types of restaurants.  One time I was sent to retrieve something out of a purse, and had to paw through enough condiments to run a fast food joint.

My mother has no problem using my father’s handicapped placard to get a space closer to the supermarket doors, even if the weather is fine.  No matter that he’s been dead for six months.  I try to explain to her that this is lying–she is in no way handicapped (she said her knee hurt, and feigned a limp for a few steps, then forgot about it and switched into her locally famous confident stride)–and it is also stealing, because she is taking a parking space that a really handicapped person might need.  I had that happen once, when I was on crutches for something, and all the handicapped spots were taken.  While waiting for one to open up, I watched several totally able-bodied people come along to their vehicles parked in spots that I could have used, had they not been stolen by the Temporarily Able Bodied.  So in Jewish Law, at least, using your late husband’s handicap tag simply because you can, is both lying and stealing.  Bad things.  But she doesn’t think it’s bad.  She thinks it’s “getting away with something,” sort of like shoplifting, which she doesn’t really see as a crime.

To get to the meat of this story, now that I have given a dissertation on Narcissistic Personality Disorder: the sister’s life has taken a devastating turn for the worse.  First off, her husband, who has been her landmark in her stormy emotional sea, and whose constant praise has sustained her, got MRSA (Multiply Resistant Staph Aureus, AKA Flesh Eating Disease) in a sore on his leg, and being 97 (although an extraordinarily active, and healthy up till now, 97), his immune system couldn’t fight it, and he seemed imminently moribund.  All the family gathered at his hospital bed, gowned and masked against the horrid disease, to await his demise.

Imagine their surprise when they showed up one day to find him sitting up eating a hearty breakfast!  Miracle.

But it didn’t last too long.  The profound dips in his blood pressure during the critical days of his illness had done their work on his brain, and now he is being cared for by his daughter, who says that he is “in and out of it.”  No telling how long he’ll last.

In the meantime my mother flew to be with her sister, which was a good thing because her sister has florid dementia and can’t be left on her own.  I think she might have had it for quite some time, but her husband kept things together and served as her stabilizer.  But now he was not at home, and to her that means he is gone, no matter how many times they brought her to see him.

But that’s not all, folks, that’s not all.  The sister had a sore place on her leg.  It was red and puffy.  My mother took her to her doctor’s office, but the doctor had no openings, so she saw a PA, who diagnosed her with MRSA empirically, (which was probably correct), did not take a culture (bad), and sent her home on the wrong medicine.  Bad, bad.  Possibly fatal.

In the meantime, my 88 year old mother is reveling in the adulation she’s getting from the rest of the family for caring for her sister.  It was the right thing to do.  But she was wallowing in an environment crawling with MRSA, since it is passed by fomites.  That’s one of my favorite words, fomites.  A fomite is any article that can pass germs from one person to another, like a hand towel.  Let’s say somebody’s sick with oh, let’s say, MRSA, and they touched an infected part of their body.  They went to wash their hands, and they opened the bathroom door with the now-contaminated hand.  The MRSA germs are now on the door handle.  Different germs live for different amounts of time on different surfaces (did you know that the HIV virus can only live less than 5 seconds on a fomite?).  MRSA can live quite a while, especially on damp surfaces like the hand towel they just dried their poorly washed contaminated hand on.

Now we have an infected bathroom.  Door handle, sink handles, hand towel.

But someone else has been impatiently waiting because they have to go to the bathroom.  The infected person comes out and closes the door.  The Someone Else opens the door, getting MRSA on their hands.  They use the toilet and flush–now it’s on the toilet handle.  Wash hands, dry on the infected hand towel…

Now you might be wondering, in that case, why doesn’t everyone come down with it?  The answer is: it’s because of the wonders of the immune system.  If you are a healthy human being with a normal immune system, you’re going to be fine, most likely.  But if you are 90 and have a weakened immune system, you might be in trouble.

How does MRSA get into our bodies in the first place?  Usually it needs a break in the skin, no matter how small, to take hold, and a weakened immune system that can’t fight it off.  So let’s say the person comes out of the bathroom, having been bathing in MRSA bacteria, and scratches an itch.  This causes a tiny break in the skin; and the MRSA germs that have been patiently hanging out under their nails just bail right into the tiny cut.

Under the right conditions, these germs can now have a holiday infecting skin, fat, muscle…whatever they can manage to spread.  Since they are Multiply Resistant Staph Aureus, that means that most of the usual antibiotics used for soft tissue infections will not work.  And the library of resistant Staph Aureus germs is growing at a frightening pace.

MRSA is not something that can or should be treated on an outpatient basis.  Anyone with a confirmed MRSA infection needs to be hospitalized and treated with the few remaining IV antibiotics left in the arsenal.  And, oh yes, they must be isolated, quarantined so that they can’t spread the disease to others.

Back to the present.  My dear aunt is now surrounded by her two terribly dysfunctional children (in their 60’s), who are almost as clueless as she is.  They are ostensibly taking her–today–to live with, or near (in a nursing home), one of them, which involves an airplane ride.  That should be interesting.

So the female cousin mentions, this morning before the flight, that both of my aunt’s legs are swollen up to the knees today.  She’s not eating. Not good.  I get this information by way of my mother, who I’m pretty sure is losing what marbles she had left.  She should have put a halt to the travel plans and had her sister hospitalized right away.  Instead, they took her on the plane (which is now a contaminated plane), with the plan of taking her to the ER when they landed.  Sigh.

As my mother was telling me this sad story, she digresses to mention the ice in her driveway and how she needs something outside (nothing critically important), and she is going to put her ice grippers on and go and get it.

Please, Mom, don’t do that.  I don’t want you to fall and get hurt.

“What, you mean you don’t want me to mess up your trip?” she says sarcastically.

It took me a minute to figure out what she was talking about.  Then I got it!  She was talking about my plans to go RVing, sometime in the near future, when the weather finally breaks.

She was projecting her thought process onto me!  That is what she would have assumed, were she in my position.  For a fleeting moment I understood how her mind works.

_______________________________________________________________________________________

*Dayenu=Hebrew for “Enough for us!”

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.

Not So Fast

Uh-oh.  My dream of hitting the road and being a wandering gypsy might get a little sidetracked.  My aunt and uncle both have MRSA (Multiply Resistant Staph Aureus) and the entire family is in an uproar.  They are both very elderly, and between the illness and the stress they have both gone off the deep end into dementia.  Various family members are taking turns caring for them.  I haven’t been tapped yet, but it seems only a matter of time…

And yet I still intend to pick up my RV as planned, drive it home, pack up, and if need be drive to (chilly) Florida where they live.  I do worry about myself, because my immune system is not so good.  I hope I can avoid yet another family obligation, as selfish as that sounds.

I’ll keep you all posted on the developments…

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.

 

Go And Rub My Head

…And let the hurt things out.

That’s what woke me this morning:

….You know without a doubt

Go and rub my head

And let the hurt things out

The kernel of a song.  My third “good one.”  That’s how they come, in my dreams.  They wake me up, I write them down.

This one came in a gush of tears.  I grabbed my voice recorder and whispered the snatch of song along with its tune and arrangement (they all come as a fairly complete stubbed-in piece to be completed while awake), collapsed back into bed and hours later I am still crying.

Last night I was up till I couldn’t stand it any more, IM’ing with a friend back in Jerusalem.  His wife died not long ago, he’s still young, he’s got a bunch of kids…..he’s so, so lonely…..he just wants someone in his bed to keep him company and drive away the chill grey of the dawn.  Will I come back and just be his friend and warm him?  Oh, he knows I’m old and sick (he’s young enough that I am old!), but we are such good friends and…….

I know, I know….don’t worry, I am not offended.  You know that I can’t do this for you….Yes, I know.

I have acted this role for so many, many people over the years.

I have been the Temple Prostitute, the Holy Woman who heals through the balm of Sacred Sex.

How many souls seared with the pain of loss, loneliness, lost-ness, have I soothed and set back on their way, smiling and breathing, with a word of thanks and freedom in their step?

I am glad for them.  I am grateful that I have been given a role in their healing.  I watch them go, and I don’t let them see.  Don’t look back, for I am naught but a pillar of salt tears.

What about me, I ask my Creator.  What about me?  Do I get a reward here, ever?  Or do I die alone, knowing that I have helped….is that my reward?

I’m sure that my reward will come, but not in the form that I would dearly love to have.  I haven’t merited that.  Not this time around.

I am of the lineage of Dina (Deena), daughter of Leah, the thirteenth child born of the loins of Yaakov (Jacob).  I will tell you more about her in my next post, G-d willing.

But for now, this soiled dove must tuck her head under her wing and weather the cold alone.

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.”

Geriatric Dating

Every once in a while, I hear of some couple in their 80’s or even 90’s getting married.  Good on them!  I applaud their courage.  I will dance at their wedding.

On the other hand, I, who have passed my 61st year, am surprised I’m still alive, let alone thinking about getting married again.

Of course I do not have any prospects at the moment, but my recent date put the idea in my head.

Do you realize that not so long ago, the median age at death was 35?

Since for the most part we have conquered infectious diseases in the developed world, the average lifespan has climbed to 79.  That was last week.  This week, it’s probably 85.  Next week our prospects will be 95.  I’m nearly, but not entirely, joking, of course, but as we begin to find more and better cures for various lethal conditions, we will doubtless be saddled with longer and possibly healthier lifespans.

Women nearly always outlive men, so there is a plentiful supply of widows available to the widowers and divorcees out there.

But there is a thorny problem: many–or, stretching myself out on a limb, I will say most–single men prefer younger women, especially as the wrinkles and the various effects of gravity set in.  They are mistaken, of course, because older women have a lot to teach them, both in and out of the sack.

I have a number of male friends, some of whom I have dated at one point or another.  All of them are in their 50’s or early 60’s, and all of them are looking for a 30-something with whom to start a(nother) family, or simply to admire.

I have known these friends from a minimum of 8 to a maximum of 40 years; and I have watched them get slower and fatter and grayer and balder, and they still have not discovered the elusive 30-something, preferably never-married and childless, with whom to cuddle up in their new love nest.

The natural consequence of living is that we get older.  Let’s face it, if we keep on keeping on, we are going to get wrinkly and saggy.  We will not look like we are 30 anymore.

There are days when I look in the mirror and mutter to myself, “Who was that plastic surgeon again?”

Right.  I know women who have had fantastic face lifts, tummy tucks, butt lifts, titty lifts, and within 5 years it’s all back where it was before, except that now they’re covered with scar tissue that is much less attractive than the sagging body parts they had before.

I, for one, am past the point of Internet dating.  Tried it after I was a divorced 30-something, and it proved frustrating even then, since most of the male factors mostly wanted a wham-bam, but after 40 I was tired of dodging the gropers and gave it up.

When I emerged from my last long-term relationship, at age 48, I dove straight into the Orthodox Jewish life.  That meant no touching, no singing together, dates either set up by friends or matchmakers–and Orthodox internet dating, managed by a matchmaker, of course.  Ho-hum.  And the men I met that way were either obnoxious or exasperating or both.

Now that I have emerged from that life, I feel rather like the subject of Shel Silverstein’s poem:

“Whoops, we’ve been caught by a Quick-Digesting Gink

And now we are dodging his teeth

And now we are restin’ in his small intestine

And now we’re back out on the street!”

Except.  Now.  I.  Am.  Sixty.  One.  Years.  Old.

And not only that, but those of you gentle readers who have been faithfully following my blog, and I do love you for it, and for who you are, and for your own blogs, and everything….you all know that life has been a bit of a rough ride for me.  This cowgirl has seen a lot of biffs and bangs, got bucked off a few times, and as I have told the few prospective dates who have wandered in and out of my life, I am a “scratch and dent model.”  But no bargain by anyone’s stretch of the imagination.

I require careful watering and fertilization.  An orchid is nothing to the maintenance I require.  My brakes are bad, transmission needs an overhaul, tires are bald, I have a poorly patched hole in my muffler, and I mix metaphors.

As if that were not enough, I am terrified of exposing the lumps and bumps life has dealt me.  I dread the revelation that I am chronically preoccupied with refining my suicide plan.  I suffer from various chronic physical illnesses that limit my mobility and versatility.  My teeth require frequent patching and emergency treatment.  My joints are for shit.  And other, more embarrassing consequences of aging that needn’t be discussed here.

I bring this topic up because I know I am not the only one out there with these insecurities.

Whenever I open the question of whether I will ever gather the courage to enter the dating scene again, invariably I get all sorts of encouraging comments saying, “Oh, you’re such a wonderful person, one day Mr. Right will show up.”  And depending on my mood I either laugh hysterically, or smack the unfortunate encourager in the gob, because I only bring the subject up when I’m having an attack of The Lonelies, which could last an hour or a day, but not much longer.

I have a lot to do.  And I’m not sure that, after all these years as a crotchety old hermit woman, I could share life with anyone else.  My dog is good company.  She doesn’t care that I am set in my ways.  She likes my routine.  She doesn’t mind that the bathroom is outside.  She herself goes outside to do her business, so why shouldn’t I?  (BTW my outhouse is frozen solid at the moment, which complicates things.  Don’t ask.)

I suppose if some Prince Charming were to show up at my door and say, “Oh by the way, I find wrinkles, sagging breasts, and stress incontinence irresistible in a woman,” I would be suspicious as hell, unless he happened to be 79, in which case I would give him tea and send him packing.