Poor Puppy

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I only count four Kong toys.  She must be sleeping on the fifth!  On her Serta mattress.  She works hard, and loves her Kongs!  Tomorrow I must trim her nails again.  She dropped her Kong today while we were playing, and in true Malligator (Malinois) fashion, she used me as a sort of hinge, grabbing hold of my leg with her claws so she could use me as a springboard.  Another gash, not too bad this time.  I didn’t have to say a word.  She knew she had injured me (again).  I just picked up the Kong, put her back on the leash, and brought her straight home at a smart heel.  Damn Malligators.  They are great at what they do, but you have to expect to get Mallinated every once in a while.  I love my girl, and she loves me.  And now to bed, for me too (no Serta mattress for me, though.  Just the back seat of my van.)

New Black Box Warnings: FDA

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Why on earth did this happen?

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

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

Hallelu

Finally!

I got an appointment at the Cleveland Clinic MS unit!  Now I just have to get there, driving very slowly, with many stopovers, from my current location at the southernmost tip of Virginia.

The appointment coordinator actually offered me an appointment for Monday, but, uh…

Even one year ago I might have jumped into the saddle and been there tomorrow!  But now it will have to be in short hops with many rest area stops to limp around and stretch my poor hands, which have been cramping up like nobody’s business and just giving me general hell.

Last night I read about neurodegenerative diseases, cried a lot, did a bunch of research and decided that I’d better at least get a more definitive diagnosis than the one offered by my neurosurgeon, e.g., “This weakness is not from your spine.  You have some kind of neuromuscular disease.  MS, probably.  My PA will get you a referral.”  After six months, I finally got an appointment offer.  In another three months.  In Phoenix.  With a neurologist who specializes in epilepsy. Nah.

All I want is a diagnosis, and a prognosis.  I want to make sure it’s not some other process like ALS, which is also on the table because of some abnormalities seen on my last MRI but not followed up on by the surgeon: not his department.

Will someone please tell me what happened to doctors, that they quit being doctors and started being fancy technicians?

What about the time(s) over the past 10 years that I’ve complained of total exhaustion and exercise intolerance and heat intolerance to my primary doc, and been sent to cardiologists who only found mild mitral valve prolapse, and the entire issue was scuttled: The End, no further questions, Your Honor?

How about the time I complained of exhausting fatigue and was offered stimulants???  Great.  No thanks.

Or the most recent debacle where I fell down on the fucking treadmill after screaming that my legs were locking up on me (they do that if I use them much), so the cardiology techs dragged me off and threw me on the table so they could get their “post exercise” echo, later condemned as unreadable but billed to Medicare nonetheless?  Exhaustion not of cardiac origin.  And yet, you would think the cardiologist, being an M.D. and all, might have some other ideas regarding the etiology of extreme fatigue, muscle weakness and wasting, spasticity, and pain…wouldn’t you?

Granted, he did exhibit a modicum of holistic thought when he suggested my fatigue might be due to the naughty guts.  Bingo!  Yes, the guts do cause me fatigue, and I do buy that theory.  But the guts do not give me muscle wasting, spasms, weakness, etc etc etc.  They are just there to help make life miserable and to ensure that I don’t get proper nutrition.

I can’t even drink “Ensure,” because it is so full of lactose that even huge doses of lactase do not detoxify it for my enzyme-less guts.  Fuck a bunch of guts, I want to live on sweet tea and clean, cool, dry air.

I want my diagnosis, and then I want to go back to Colorado where the air is clear and cool and the nights are cold.  And when it comes winter, I’ll go back to the high desert.  And when things get worse, I’ll know what to do.

 

Already This Morning

I woke up with a shart.

Not exactly woke up with, but soon after.

…In the middle of the first cup of coffee I’ve had in days.

Lying in bed, dallying with my 35 year old, much loved, many times broken and repaired porcelain coffee cup, made special for me by my dear departed daddy-o, sipping strong Cafe Bustelo made in my simple Melita single cup red plastic drip cone.  Very strong.

It began the way most farts begin.  But it didn’t stop there.

Fortunate that I had my favorite lounge pants on, and that they are black, and that I have a handy clothes pole in my rig where they now hang, dripping dry after a wash-out in the bathroom sink.

I am disappointed.  This morning bulges with plans unfulfilled.  It was to be the second in a series of unparalleled good days. 

Yesterday, I wasted about two weeks worth of energy that I didn’t have, but took a mortgage on my future and went ahead with something wasteful in every way.

I have held off writing about this whole balagan (Hebrew for “wretched mess”) with the cardiologist, simply because it’s too boring to think about, and certainly too boring to write about.  I’m feeling sleepy.

B’kitsur (in short): I have been experiencing episodes of inflammation in my veins, on and off for a year.  Since I must have the torn cartilage in my left wrist surgically repaired, it is now relevant to discover whether this vein issue presents any additional surgical risk.  I was sent to a cardiologist who supposedly specializes in veins, to find out.

This cardiologist did not seem at all interested in my veins or anything else.  Oh yes: he is interested in tests.  Every kind of test that is high tech and expensive, he is interested in.  I believe he might be a little bit interested in money, too.

Last week I endured three kinds of cardiac echo tests, performed by a male technologist whose pinky finger seemed to be using my bare left nipple as a place marker as he worked the echo probe on my heart; at least I hope that is what he was doing.  It hugely triggered my rape survivor PTSD, and I dissociated, leaving him alone with my left nipple.

The next part of the balagan was a stress echo, where they do a regular echocardiogram, then hook you up to a 12-lead EKG (they hook you up real good: instead of merely slapping the sticky EKG leads on, they first scrub you down with alcohol and then sandpaper your skin without asking first whether it’s OK or whether you have any skin conditions, then they stick the leads on your abraded skin without looking to see whether you’re already bleeding) and put you on a treadmill.  You take two or three steps at a normal pace, then suddenly and without warning, they turn up both the pace and the angle, so that you have to trot to keep up; and suddenly your legs feel like they’re going to fall right off and you tell them that; so instead of simply slowing the treadmill down, they stop it suddenly, so you DO fall down.  Then they drag you bodily onto the echo table and do the “post exercise” scan, which of course is invalid because your heart rate didn’t reach the target 85% of maximum.  Shit, I could have told them that.

Now, you must understand that this represents all of what I hate in modern medicine.  Not all.  That comes later.  Most.

Thing One:  This test should have been scuttled.  Medicare should never have been billed for an inadequate exam.  It’s like billing for a blood test where the quantity was not sufficient to test.  And yet it was billed.  Is this fraud, or merely bad practice?  I’m thinking.

Thing two:  When I saw the cardiologist in follow-up for this inadequate test, he never really questioned why I was unable to exercise, even though I have been complaining and complaining and complaining of exercise intolerance to anyone and EVERYONE, including himself. 

Instead of talking this through with me, he went ahead and ordered a NUCLEAR stress test.  NUCLEAR!

How effing much are they billing Medicare for that one?  Cheeziz K. Reist** on a bicycle, I can’t even imagine.  4K?  At least.  With whipped cream and a cherry on top.  No nuts, thank you, they get in my teeth.

The nuclear balagan began yesterday afternoon, following the first decent morning I’ve had in weeks.  The heat has killed my already overheated constitution.  My weight is plummeting, since anything heavier than clear liquids leads to hours of belly pain and retching.

So it stands to reason that on the first morning that I pop out of bed at 0630 feeling rested and ready to engage with the world, I must fast, because fast I must if I am to get this nuclear test behind me.

So I fritter the day away drinking sugary liquids so I won’t get any more hypoglycemic than I already am.  I check my pup into an air conditioned kennel at the vet for the afternoon, and check myself into the diagnostic cardiology lab again.

I am relieved to find that the tech with the heat-seeking pinky has been replaced with a robot who scores very high on the Spectrum, but behaves well and doesn’t give me any shit about using the special tape I brought to secure the IV: special tape that does not rip my skin off.  He gets the IV in on the first try, painlessly, in my only good vein.  I love him.

I’m injected with Technetium 99, the radioactive isotope that the gamma camera will read, to make pictures of my heart at rest.  I’m given my first Chinese Water Torture huge cup of water to gulp, which expands my circulating blood volume.  They want to get the isotope into my heart muscle and cardiac vessels.

The gamma camera scanner is claustrophobic and cold.  I dissociate.

Next thing is the injection through the IV of some stuff that dilates all of my blood vessels very suddenly.  It’s a good thing I’m lying down already, since my blood pressure plummets from 130/85 to 90/60, which is officially the territory of circulatory shock.  It felt very weird.  I decided not to dissociate for a bit, knowing that I could at any time.  I kind of dug feeling how it felt, the weirdness of it all.  I stayed present for it.

Now they wanted me to eat a high fat snack, to help open up my circulation and get things running.  Fortunately I had just such a thing in my backpack.  They did have snacks there, but all of them contained gluten.  That’s why I always bring my own food, anywhere and everywhere.  You can never tell.

After another giant cup of water and two radioactive trips to the bathroom, I went back into the scanner, this time with leads on.  The EKG would coordinate the camera to pick up on the various phases of contraction and relaxation of my heart. Cool.

So that’s done.  Very nice.  Except for the couple of PVC’s (Premature Ventricular Contractions) that I had, which are nonspecific and most likely benign, I am sure that this will be a normal study.

And I think I remember signing a “Medicare balance billing” agreement, which means that anything Medicare doesn’t pay for, I get to pay for. 

Worse, this whole balagan has snowballed from: why does this person have recurrent vein inflammation? into a whole high tech cardiac workup.

Medicine has got itself into a very sad situation. 

I’m crushed to see my formerly noble profession sink so low.

I remember babbling to the tech who did the vasodilating torture test (they swapped him out for the robot for this part), about how any doctor who knew her salt could do everything she needed with a stethoscope, an otoscope, ophthalmoscope, tuning fork, some straight pins, and a few basic lab tests, five working senses, and a working sixth sense.  Your basic Black Bag.

He said yeah, I know, right?  That’s what they do in the third world.

I’m like, yeah, right?  What are you gonna do when the grid goes down?

Meanwhile back at the low tech ranch, I’ve been forcing myself to stay inside my body when I’m out walking The Doggess.  It’s been worthwhile.

I notice that while I do get out of breath, the limiting factor is that after a few minutes both my thighs and my calves start to feel like wood.  If I don’t slow down or stop for a few minutes, my legs just absolutely stop me.  I just can’t go no further.  Nothing doing.

And so [n.b., one is never to begin a sentence with “and so”], what is your diagnosis, Doctor?  (Physician, heal thyself…if you can tell me who said that, you get a prize!) 

Hie thee to the medical literature.  Ah, there ’tis!  What ill manner of bodily curse is’t?  Fie, Doctor!  Take it off me now!  What, cans’t?  Nay.

It is: Neural claudication.

“Claudication” happens when, for one reason or another, arteries experience spasms in response to increased oxygen demands, such as exercise or digestion.  When this affects the heart, we use the term angina.  When speaking of arteries downstream from the heart, such as the legs or abdominal arteries, we say claudication.

The most common cause of claudication is atherosclerosis, and the most common cause of atherosclerosis is smoking.  Second most common, diabetes. I don’t smoke and I’m not diabetic.

Move down one notch on the algorithm.

Next cause: neurogenic.  Degenerative Disc Disease, long-standing.  Yup, got that. Description.  Yup, got that.  What to do about it: um, let’s see.  Whole spine decompression and fixation?  Hmmm, let me think about that for a while.

In the meantime, I have my explanation for the most recent annoying symptom on the list: my right thigh goes into a cramp when driving in traffic, or anytime I can’t use the cruise control.  Claudication!  And it didn’t cost Medicare a thing!

Dammit, is there a doctor in the house?!

Getting back to the shart thing:

Last evening, having completed all of the cardiac testing I intend to have in this life, I collected my ebullient pup from the vet and returned to my tiny-but-it’s-got-a-plugin camping spot.  Had a few larfs with a kindred soul at the far end of the campground, went to bed with high hopes for today. Woke up feeling pretty good, made coffee and a gluten free muffin…whoops, the Crohn’s monster swooped in and snatched another day.  Oh well, let it go, let it go, let it go.  What’s the hurry?  Where’s the fire?

In my guts, is where the fire is.

**Dear R. Crumb, thank you for bringing Cheeses K. Reist into the world.  Cheeziz is his great-grand-nephew, seven times removed.

Sick Day

Wouldn’t you know it.

I have had a maintenance appointment for my van this morning, but….

I’ve been feeling weird for a few days.  Had an “upset stomach” last week, treated with Imodium and cannabis tincture, got OK in a few hours.

Past few days I’ve been seeing some blood in my stools, but that does happen now and then.  I’ve got Crohn’s Disease, after all.  Fortunately a mild case.  I’m grateful for that!

Last night I felt beat.  I chalked that up to long pleasant walks with My Girl Atina.  Had a simple dinner of soup and went to bed at eight.

I awakened at 6 with a start.  Freezing cold.  Well, it WAS freezing cold, since I am low on propane and had to triage between the gas fridge and the heater.  The fridge won.  So it was pretty damn cold this morning.

Suddenly I realized why I was awake at that ridiculous hour:  I needed the bathroom, and right now!

Fortunately my bathroom is right next to the bed, so I hopped in there….

Sorry to be gross, and I won’t be upset if you stop reading now.  In fact, I won’t even know if you stop reading now, so proceed at your own risk.

There is a certain vile stench that rises off of bloody stool.  Those who have smelled it know what I mean.

If I were not the kind of person who would rather die than puke, there would have been a terrible mess.

Imodium doesn’t stop this kind of thing.  Blood is very irritating to the digestive tract.  Imodium does seem to help the cramps and spasticity, so I use it.  I’m on my third.  Can’t take more than four a day.  As it is, after this episode has passed, my gut will be paralyzed.  I won’t crap for four or five days, at least, and then I might have a normal week or two. 

Now my belly is lying there on top of me all pooched out, full of borborygmi (oh God I love that word!  Borborygmus, singular; borborygmi, plural.  Def: bowel sounds that are audible with the naked ear)–in my case, audible across the room.

Last time, we had a little conversation about farts.  Remember?

Good.  Well, people, I know there are those among you who KNOW that dreadful feeling…is it really a fart?  Or is it…something else….

Yes, it certainly could be something else….let us get to the bathroom…quick….

Oh dear.

Let’s look on the bright side: at least I’m disabled, so I don’t have to worry about calling in sick.

But I just did call in sick to the mechanic!  Oh brother.

I’ve been halashing (that’s Jewish for “longing,” more or less) to do some volunteer work.  What I really want to do is to read aloud to little kids, homeless people, nursing home residents, people stuck in the damn hospital….anyone who wants to hear the magic of a book. 

To me, books are the most tangible evidence of humanity.  There is magic in the visual arts, but those could have been done by angels.  No angel could write a book.  They are too concrete, angels.  Come to think of it, an angel could never make good art.  You have to break the rules to make really good art.  Angels are programmed.  They can’t break the rules.

Ugh, my belly hurts.  Now I have to find my heat pack and put it in the microwave.  And burn some fucking incense.  Atina’s been licking her ass again.  The bathroom is stinking the place up.  God, I can’t wait till this blows over.

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?

Miss Biggess Doggess Has A New Toy!

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Flagstaff loves me.  The ball of yarn keeps getting bigger and bigger: that is to say, I am becoming more and more deeply involved with the workings of this tiny city that perches on the Coconino Plateau, at 7,000 feet above sea level, nestled among a flock of young volcanoes.

After my thirty-first medical provider visit this month, I was overcome by a sensation that something was lacking.

For one thing, I was drained to the tips of my finger and toenails from my appointment with the new Family Practice Nurse Practitioner.  I hate to think how drained she must have felt!

The purpose of this appointment was allegedly to seek a solution to my stubborn high blood pressure.  High blood pressure is bad.  It damages one’s kidneys, causes strokes and heart damage, eye damage, and basically messes you up, usually without any symptoms at all.

Having symptoms, like headaches and blurred vision, means the high blood pressure is getting to one’s brain.

God knows, I don’t need any more brain damage, so when I realized that my permanent headache and inability to read the Louis L’Amour paperback borrowed from the campground laundry room because my vision was blurry might just be high blood pressure symptoms, I went to the Walgreens and bought a fancy blood pressure machine.

The first time I tried it out, the damn thing read 165/106 (normal is about 120/75).  I ran it a couple more times and it said approximately the same thing.  I didn’t like that at all, so after a couple of hours on the phone I got the soonest primary care appointment available, which was two weeks away.  In between times I did all the things one is supposed to do to lower blood pressure, like exercise, breathing, meditation, cuddling with one’s Doggess, and fiddling with medication doses.  And hoping like hell that nothing bad would happen.

Last night my BP was dangerously high, so I took a rather large dose of my medication (don’t try this unless you’re medically qualified), and my usual dose this morning.  My BP in the office was perfectly normal, so of course I felt like a fool.

To make matters worse, I disclosed all of my psychiatric diagnoses and their respective meditations, and the NP completely unraveled.  Poor thing, who can blame her?

To her credit, she did a great job of picking out a team of specialists to help figure out what in the hell is wrong with my immune system and nervous system and skin, and whether all these are part of the same problem, or whether they are separate problems.  As for my blood pressure, she told me to keep doing whatever I did to bring it down, and gave me a script for more of that particular medicine.

Driving back from that exhausting appointment, I spied a grocery-store-cum-gas-station I’d seen before but never stopped at, because it looked down-at-heel and sad, like one of those discount groceries that appear and disappear in a matter of days like mushrooms after a good rain.  Today I needed gas, though, and the price was right, so I waited in line till a pump opened up.

After filling my gas tank, my mind returned to my own stomach.  The grocery had a Starbucks logo on the wall.  Hmmm, a green tea soy latte might perk me up!  I went in.

Have you ever had the experience of going into a drab, shabby building, and finding the inside bright, beautiful, and full of your favorite fresh fruits, veggies, and gluten free foods?  Heaven.  I got my green tea soy latte and headed for the aisles.

Half an hour into the orgy I came to the pet stuff aisle and was struck by a largish wave of guilt, since Atina had spent most of her day in the van, while I was enjoying my medical appointment and now shopping my heart out; therefore, I sprung for the $8 on sale “un-stuffed” furry critter with a squeaker at its head and tail.

I paid for my order (Jeezus Kreezus, $120 for those few things?  And this isn’t even Whole Foods!) and hauled my cart out to the van with my one good hand.  Atina glared at me from her spot on the bed.  She had good reason to be sick of being locked up!

The moment I cut the tag off the new Critter and threw it at her, all was forgotten.

She caught it.  It squeaked!  Just like the squirrels that taunt her all day around here would do if she could ever get her pearly whites on one!

Since then, the Critter has been relentlessly shaken, chewed, squeaked (my ears, my head!), and is sodden with Doggess spit.  Now she sleeps, worn out with worrying the new Critter to death.

The best $8 I’ve ever spent.

I Got Carded!

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

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

I think they took pity upon my sorry ass.

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

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

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

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

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

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

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

He laughed.  But that is true. 

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

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

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

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

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

I guess I will be having a busy spring.

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

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

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

The phone rang.

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

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

Realization

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Two is too many

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Don’t be elderly.  You won’t count.

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

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

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

I need surgery.

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

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

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

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

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

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

Any questions?

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

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

Oh.  Yes.  Definitely.  I see.

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

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

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

We rise, shake collegial hands…

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

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

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

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

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

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

Exasperated sigh.  Again, with feeling:

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

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

–Midline.

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

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

How long until I am able to drive?

–That depends entirely on you.

What does that mean, exactly, please?

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

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

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

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

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

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

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

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

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

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

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