An Anorexic’s Nightmare

I’ve been out of touch.

Quite literally.

My waking hours are wasted spent “running to doctors,” as my grandmother of blessed memory would have put it.

So many doctors, so little time.

And the striking thing, the thing that literally renders me speechless, is that none of them ever touch me.

Not even with gloves on.

They “listen” to my heart and lungs through the three layers of clothes on my torso: camisole, tee, and blouse. 

I’ll let you in on a trade secret: the stethoscope has to go on bare skin.  Otherwise all you hear are three layers of cloth moving against each other: scritch, scritch, scritch.

They don’t look into my eyes, nose, or mouth, although volumes are written there.

Nor do they palpate my abdomen, which, if they did, would give them a surprise, since I have a couple of tender masses in there.  In fact, my erstwhile gastroenterologist, who had it firmly in her mind that I had IBS before she examined me, mashed into my belly like a jackhammer, and while she watched me peel myself off the ceiling, she mumbled, “Hmmmm.”  Yet she did not question her diagnosis.  I fired her.

I got a shock the other day when I requested a copy of my latest MRI from a specialist who had only touched the affected part of my body one single time, out of the several times I’ve seen him.  On that first visit he did pretend to listen to my heart and lungs.  I had a sweater on that day in addition to the above mentioned layers, so his exam was extra special.

When I picked up my MRI report, the receptionist handed me a copy of the clinic notes from my most recent visit.

It said:

“Well developed, well nourished white female in no acute distress. 
Pupils symmetrically reactive.  Cranial nerves grossly intact.  Trachea midline without deviation.  No jugular venous distension.  Heart: S1, S2 normal, no friction rub or gallop.  Lungs clear to auscultation and percussion without wheeze or rales.  Abdomen soft, non-tender, no masses…..”

In short, whether or not you know the jargon, here is an entire “normal physical exam,” none of which was ever done. 

This is the gift of EMR, Electronic Medical Records.  It provides a default “normal” physical exam, altered only if the provider inputs other findings.  One would think that this amounts to falsifying medical records, wouldn’t one?

When I was a medical student, we (or at least I; I can’t speak for the other students) practiced this catechism of normal findings, writing it longhand over and over until I had it memorized in my sleep.  That way we knew what was normal and what was not.

There were two differences, though: in my day we actually wrote things in paper charts.  We had to write really fast, so our notes looked like this:

“WDWNWF in NAD C/O SOB x4H”

Translation:

“Well developed, well nourished white female in no acute distress complains of shortness of breath for the past four hours.”

The other difference is that we actually laid hands on the patient.  We had them undress and put on a gown so we could lay the stethoscope on their chest and close our eyes and listen for those subtleties and nuances of the music the heart makes.  I remember silently cursing chest hair: scritch, scritch, scritch….

And if we didn’t examine something, we wrote: NE (not examined).  But we were not allowed to not examine something, unless the patient objected, in which case we wrote:  PUC (Patient Uncooperative)!

Although we are no longer allowed to describe physical findings in strings of acronyms (although we are apparently allowed to falsify that we actually examined the patient), there is one acronym I will never let go of, especially now that I am getting some practice being a patient.  It is:

WNL

Which is supposed to stand for

“Within Normal Limits”

When I was a student we had an inside joke that WNL actually stood for

“We Never Looked”

Only nowadays, it’s no joke.

Oh yes.  The Anorexic’s Nightmare.

I lost two inches because my spine in collapsing.  Therefore, my BMI is now 25!!!!   I’m suddenly overweight! 

How did this happen?

It’s not fair!  It was that rice I ate yesterday.  That must have been it.  Oh, wait!  I ate a cookie!  Gaaaaaa!  And I’m not bulimic, so I can’t do a thing about it! 

Gaaaaaa!!!

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?

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.

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.”

Today Is Another Day: Rapid Cycling

As you may remember, yesterday I was painting my toenails in the middle of the night.

Alas, that was not to last.  I woke up this morning with a feeling of dread in the pit of my stomach.

After I finally went to sleep last night, with the aid of more Seroquel, I woke up a bunch of times because my arms were numb and tingling.

Fuck, you know, this has been going on in one form or another for several years.   I’ve been writing it off as probably due to my arthritic collar bone, but this is different.

My medical experience gives me all kinds of terrible fears.  MS is the main one these days.

I remember the day in medical school when they taught us all the bad things that can possibly happen to breasts.

My then-husband came home to find me huddled in the bed hysterically crying.

“What’s wrong?” he asks.

“My breasts!  They’re a ticking time bomb!  I want them off right now!”

“There there,” he said, not knowing what else to say.

The next day I ran to the Student Gynecology Service to get a pre-operative exam.  The kind Nurse Midwife examined me and assured me that at the moment my breasts were not explosive, and offered to re-check them whenever I started feeling breast-anxious.

I felt rather foolish, but relieved that at the age of 29, nothing was wrong with my breasts.

Why do I make these digressions when I’m depressed?

Maybe it’s because I don’t really want to engage with the depression.  I know it will pass, and something else will take its place, but when it’s on me, it’s literally on me, and all over me, and in me, and I can’t shake it off.  All that happens is I start crying and feeling like someone is trying to rip out my guts, and doing a pretty good job at it.

Then it passes, just as quickly as it came.  What follows might be a period of “normality,” meaning, neither hot nor cold, and this is heavenly.  But it never lasts.

Hypomania, or frank mania with psychosis, tends to raise its ugly head at night, about bedtime; which for me is at 9 pm because my meds take 12 hours to wear off.  Actually they take 13 hours, but that is an embarrassing amount of time to sleep, so I actually set an alarm for 9 am.

I can tell the (hypo)mania is on its way because my bedtime knockout cocktail doesn’t do a thing.  I’m awake playing Solitaire on my iPad, which usually bores me to sleep, except now I’m totally awake: uncomfortable in my skin, twitching, restless.  I don’t want to look up because sometimes my wallpaper turns into ugly faces.

I follow the protocol my shrink and I developed for these very occasions: more Seroquel.  Another 50 mg till it knocks me out.  And a double dose of my benzos for good measure.

Sometimes it takes a couple hundred more milligrams of Seroquel to do the job.  I have an incredibly low tolerance for Seroquel, so my maintenance dose is only 100 mg.  I know, I know, some of you take 600-800.  That would put me to sleep for several days.  I usually get to 300 before it’s knock-down time.

The good thing about hypo/mania is that it can be controlled, if recognized early enough.  Depression, though…that’s another beast.

Bipolar depression is different from “regular” depression for reasons I don’t know.  I was treated with regular antidepressants for years, and was pretty much suicidally depressed the whole time.  Vitamins “L” (Lithium and Lamictal) saved my life, quite literally.  Blessings upon the quirky head of my neuropsychiatrist, who was on call when I was hospitalized the first time, and got my bipolar figured out.

The only adjustment we can do for the depression part of the roller-coaster is to up the Lamictal by 50 mg, which puts me at 200.  More than that pops me over into mania.  It’s a delicate balance, as you can see.

So the only thing I can really do with this depression is to wait it out.  Sometimes it does get suicidally bad, and then I have to think about my dog and my son, and what my suicide would mean for them.

I put them in that order, because my dog is helpless without me (although yes, I could put her in Rescue, but that thought makes me cry harder) and my son second, because even though it would tear him to pieces, he is at least able to provide for himself, unlike my dog.  I know that makes no sense but that is how it happens to fall out in my brain.

I’m starting to feel tired now, which means this part of the wave is coming to a close–I don’t know exactly when–and what happens next I cannot guess.

The Whole Social Media Thing

To begin with, I can’t see sh*t.  That is because I got new glasses about a month ago, with the usual promise that “I will get used to them.”  Having worn glasses for 53 years, I do have some experience with that phenomenon.  These are wrong, and I’ve been round and round with the eye people about them, so until I get that straightened out (probably by forfeiting the $385 they cost me and going elsewhere), I have about a centimeter of lens in my left eye that I can actually see out of.  So if I make typos (horrors!) here, please forgive Little Miss Picky because she is mostly blind at the moment.

Social media: WordPress.  Facebook.  Twitter.  Google Hangouts.  Google Plus.  Or is it Google+?  I don’t care.  For some reason it infuriates me.  Perhaps it’s the feeling of chaos that overcomes me when I know for sure that I have no control whatsoever regarding what little groups, or big, or medium groups I get included in.  I’ve tried posting on Google+ that I don’t want to be included in it.  Of course that generated discussion, good-byes, and affirmations that people would respect my wishes.

Not.  I keep getting family photos, adorable pictures of the new baby sister, etc., all on Google+.  I don’t respond to any of it, so the way I know it was heaved in my general direction via Google+ is when I get an irate, or disappointed, or whatever negative emotional reaction, in my actual email inbox.

Other people try to send me stuff (or register their displeasure at my non-response to Google+) via Facebook.  I look at Facebook, oh, maybe once every two or three months, except when there is a war and then everyone in my country uses it to communicate so I am on several times a day.

Quiet returns, I’m no longer there.

Oh right, Skype.  F*ck Skype.  They send me all kinds of communications in I think Icelandish, by the look of it.  I don’t understand that language.  I do use Skype once or twice a year, but I sure as hell do not leave it open so that it can start ringing and disturb my train of thought.  Anyone who knows me well enough to Skype me knows my email address.  We can make an appointment.

Twitter.  Yeah, I’m sure it’s really useful, especially in times of war and natural disaster.  It’s just that, people, I am on the autistic spectrum and I just don’t care about most things.  I care about my family, my dog, my son especially, my ethnic group, the scary situation with the honeybees, the scary situation with the bats (another very important creature that most people don’t even know about), the bad things that are done to whales by our “Defense Department(s),” and other things I’m quite sure most other people don’t know about and might not care about even if they did know about them.  I do not give one shit or Shinola about my mother’s hellish cat.

So Twitter, unless there is a war or natural disaster that you want to keep up with, is just plain intrusive.  I finally figured out how to turn off audio notifications in my current flavor of Android (who the f*ck cares whether it’s “Ice Cream Soda” or “Strawberry Suppository”?).  They’re just trying to keep up with Apple’s infuriating system of naming their big operating systems after big cats.  Jeeezus K. Reist (thank you R. Crumb), not only do we have to figure out how to stop the effing Apple Store from taking over the whole damn computer, but in addition have to remember what CAT we’re running?  I HATE that.  “Hello, Applecare, there is black smoke coming out from under my keyboard.”  “Oh I’m sorry to hear that, are you running Leopard, Snow Leopard, or Abominable Snowman today?”  “There’s no such OS as Abominable Snowman.”  “Oh yes ma’am, you’re right, I was just fucking with your head.  Now how may I help you today?”  (I discreetly send reverse amplification to their dumb and dumber terminal, causing a chain reaction on their side that blows every circuit in their personal MacBook Pro Titanium, and also gives them a hell of a toothache.

So.  No, Twitter gives me a headache.  Use my email if you want to talk to me, OK?

There’s an email in my right sidebar.  You’re welcome and encouraged to use it!  And of course I fastidiously monitor and respond to comments on my blogs!  That’s where I really feel there is a personal connection.  It’s great for people on the Autistic Spectrum, because you can interact on a personal level without ever having to do air kisses, or hug people you don’t know, or try to avoid people crushing your arthritic hands in their “firm handshake,” or smelling their idea of perfume that makes you gag, or making eye contact for any reason.  Right.  It is a panacea for all of the threatening forms of social intercourse, while opening space for actual exchange of ideas and, yes, emotion, Dr. Spock.

In the meantime, well….there really isn’t any meantime, since you’ve already read all about it above!

Love yas all, peace…..