Paging Dr. Van Winkle

When was the last time you woke up and realized you’d been a drugged zombie for 17 years?

That happened to me.  This month: May, 2017, I went through what is, I hope, my last withdrawal from psychiatric drugs.  (I remain on lithium, which is killing my kidneys slowly, but I need it, at least for now.)

And now I’m me again.  But who the hell is “me,” and what am I supposed to do?  Having been disabled by my various chronic conditions, multiplied by the even more profound disability of the drugs that were supposed to help me function, yet enveloped me in such a cloud of grey fuzz that I was insulated from both my environment and myself, I awake to find a gulf spread out between myself now and myself in the past, with no way to possibly bridge it.  17 years.

If it had not been for the drugs themselves doing what drugs do (side effects and adverse reactions), I’d still be moving about in a sea of brain fuzz.  I had no notion of stopping them on my own.  The opposite!  I was convinced that it was only those drugs that prevented me from the inevitability of suicide.  But even before I began getting serious side effects that contraindicated the antipsychotics and antiepileptics, I had started to sow the seeds for what would serendipitously become the replacement for not just one, but seven, psychoactive drugs, plus a prescription antiinflammatory.

I started taking cannabinoids as pain medicine.  Following a protocol hybridized from several in use, I began a scheduled dosage of cannabidiol (CBD), along with microdoses of THC.   I started this in the fall of 2016, and the pain relief has been superior to anything else, with minimal negative side effects and a whole load of positive ones.

When my antipsychotics began to cause extreme muscle twitching and movement disorder, I thought for sure I was doomed, because I really had benefited from their help.   The combination of brain without quetiapine and brain in withdrawal from same really did haul me to the brink.  And that was before I ever thought of cannabis.

Fortunately I had plenty of benzos to blunt the crash, but I’ve always been very careful not to get hooked on the benzos….and actually didn’t, despite being on them nightly since 1989.  More about benzos shortly.

The next to go was my darling lamotrigine.  Now, modern neuroscience tells us that bipolar disorder shares features with seizure disorders: there is a type of “kindling” that begins as a misfiring somewhere in the brain, which can then spread to other parts and finally, if that process is not interrupted somehow, involves the entire brain, causing an acute episode.  Medication and other treatments can stop this from happening, or at least blunt the reaction (note: CBD is shaping up to be a very effective antiseizure medicine, as proven in study after study).  Since antiepileptics help in bipolar disorder, that adds weight to the hypothesis that bipolar shares features with epilepsy.  Clearly, I did not want to stop my lamotrigine; but I developed the most feared side effect: toxic epidermal necrolysis.  This causes the layers of one’s skin and mucous membranes to separate and slough off, like a second degree burn.  It is incredibly painful and can be life threatening.  Fortunately mine didn’t get that far, but it was terrifying.  Bye-bye, lamotrigine!

I waited for the backlash after quitting lamotrigine, but none came.  By that time I was slamming the CBD every four hours, for a nasty episode of spine arthritis pain.  Either I had suddenly stopped needing antiseizure meds, or…wait….I was taking them–just a different one, for which my body has actual receptors: CBD, which activates CB1 receptors in the brain.

The winter wore on, and I found it necessary to have my injured left wrist operated on for the 4th time.  Even though that’s not a huge surgery, there would be pain afterwards, and if I hoped to receive any opioid pain medication, the benzos might have to go.  I decided to taper over six weeks, which is very rapid for benzodiazepines.  These drugs, which have helped me and many others immensely, are very hard to get off of.  Our bodies love what they do.

I was also taking Zolpidem, a sleeping pill that works on similar receptors to benzos.  In effect, I was taking two different benzos!  That had to stop.  And if that weren’t enough, I had a third benzo that I took when my PTSD broke through: clonazepam.  Three different types of benzodiazepines.

It wasn’t as hard as I expected.  The CBD stepped right in behind the benzos, and now that’s what I use.  The benzos didn’t make me stop having PTSD.  They helped me sleep and function a bit better in everyday life.  CBD does that too, and I feel like I’ve walked out of a wall of fog.

Along the way I got rid of the gabapentin (prescribed for neuropathic pain: THC works much better), and the celecoxib, which is supposed to be for pain/inflammation, but CBD/THC combinations work worlds better and cost much less.

Yes, medical marijuana is costing me much less than the copays for my prescription drugs, which at one point were close to $500 a month– with Medicare!  My oils, tinctures, and herbs are now costing me less than $200/mo.  Soon I hope to grow my own, which will cost even less and I’ll be able to grow organically.  I’ve substituted one botanical for eight pharmaceuticals.  Hmm, no wonder Big Pharma is all about patenting those cannabinoid analog drugs and suppressing the medical marijuana movement!

I feel like someone who has been sucked up by a vacuum and plopped down somewhere entirely different.  I can see where I was at the beginning, and I see where I am now; but the ground I have traveled is invisible.  It is a chasm.  I am no longer who I was then, and no longer who I was along the journey.

Fine, you say.  Congratulations!  But it’s not so simple.

You see, I became disabled from working at any job whatsoever on 4/4/2000.  Since that day I have maintained my medical license and all its requirements.  I tried to go back to work a couple of years after my breakdown, only to find that the system has quirks in it that do not include doctors with bipolar disorder.  I was trapped being sick.

I did do a few miscellaneous things with my time, but between my physical illness and my brain and its special disabling brain-drugs, I was trapped into being a sick person.

I have always felt that the brain part was the limiting part, since people manage to continue to work with all manner of disabilities, up to the point where the body simply puts on the brakes– like, for instance, the years I have spent on the toilet.  Or the years without use of my hands, due to joints falling apart and needing surgery.  Or the vexing problem of not being able to look up, down, left, or right, due to neck arthritis.

With my head out of the fog, I’m looking into the future.  It looks awfully scary.  I used to not care about the future, because I was certain of dying from one thing or another before I got there.  Now I’m not so sure, given the salutary response to cannabinoid therapy, that I won’t have a shot at another decade or so.

Problem is, I won’t be able to afford to live.  I have private disability insurance that will (if they don’t find a way to screw me out of it) continue till age 65, which is another year and a half.  After that, it’s Social Security, if there still is such a thing by then.  And although I’ve saved aggressively, I don’t have enough to even remotely get by.  And, lamentably, I don’t think I will be magically all better by then.  My skeleton will still be a wreck, and my guts will likely still be a-bleedin’.  I won’t be able to work at Wal-Mart, unless they have a back office with a bathroom.  

It’s a great grief to look back over that 17 year chasm, back to myself doing my doctor thing, the life I loved.  Now I’m just an aging sick person, soon to be an aged sick person living in poverty.  This was not what I requisitioned.  I did not work three jobs to put myself through The University of Chicago, to end up as one of the underhoused/homeless seniors I meet on the road.  I did not work my way through medical school and graduate school so that I could live the rest of my life disabled.  I did not work 120+ hours/week for three years of residency, only to become a patient myself, with nothing to show for my passion.

It’s tempting to throw in the towel, seeing what a colossal waste my life has turned out to be.  But not yet: I have time.  There’s always death waiting.  I want to see what’s out there, at least until my next surgery.  A joint replacement, and I don’t mean that kind of joint!

At least maybe then I’ll be able to play my banjo.  That really was the last straw with the “god” thing: taking away my hands.  If that very god looked upon me as I played, clinging to that banjo for very life during the hard times–since the moment I first picked up a banjo at age 19, it has been my comfort, my solace, and my joy where there was none before.  And my prayer, my meditation, my chant.  So if then there was some god watching as I played, and it decided to afflict my hands and take my one direct line to joy away, then I say….shame!  For tormenting the tormented.  

At least if I get a new wrist and can make it work, then I can sit and play and people will throw money.  I’ll be grateful.

“Nobody Dies For Lack of Health Care”

From the “Please tell me I didn’t really hear this” files, a glimpse into the outlandish minds of the Rich And Powerful Right:

https://www.google.com/amp/www.cbsnews.com/amp/news/gop-congressman-nobody-dies-because-they-dont-have-access-to-health-care/#ampshare=http://www.cbsnews.com/news/gop-congressman-nobody-dies-because-they-dont-have-access-to-health-care/

Warren Buffett Weighs In On Health Insurance

“Buffett calls Obamacare replacement ‘a huge tax cut for guys like me'” – http://www.reuters.com/article/us-berkshire-buffett-healthcare-idUSKBN1820RI

Yep, tax cuts are for the super-rich.  Buffett knows the ropes and isn’t afraid to call the fattest of the fat cats out on their plans to eat the poorest of the poor.

If I could get a word with Mr. Buffett I’d ask him, “How come, when it’s clear as day that the source of the problem is corporate health insurance, do we hear exactly nobody talk about regulating that industry?”

Oh!  Regulation.  Bad for business, saith Mr. Cruz.  Nope, can’t throw a noose around an industry that, in its 40 year trajectory, has become a millstone around the neck of employers and working people alike.

It’s instructive to see what Mr. Buffett says, because he is a man who literally has nothing to fear from speaking out.  He’s outlandishly wealthy, at 74+ billion, and yet, unlike some who claim to admire him, he’s not shy about telling the truth, when it comes to the real purpose of tax cuts to programs that help the not-so-rich.  Do read the article.

Why We Need Universal Health Insurance In America

I have a confession: since the election, instead of meditating first thing in the morning, I’ve been obsessing over the news.  

It’s a terrible habit.  I can see the negative effect it has on my bodymind.  I need to Just. Say. No.

Problem is, this is not mere news voyeurism.  This is eye-opening, consciousness-raising, holy-fuck-what-could-they-possibly-be-thinking revelations about the minds of My Fellow Americans.

Here, from one of my favorite medicine/science/tech news outlets, is a revealing piece on what a few handsful of voters have to say about the new “repeal and replace” iteration that has just passed the House.

For all y’all who hail from ports afar, this is about the current Administration’s effort to purge the government, and by extension the health insurance system, of “big government.”  What is Big Government, you ask?  From my observations, it seems to mean “any regulations that protect consumers and/or the environment.”  

Here, give this article a read if you have a moment.  It’ll provide a bit of thought material for when you read the anecdote that follows.

https://www.statnews.com/2017/05/05/ahca-freedom-voters/

It was a busy evening in the ER at the Crossroads of Life and Death.  I shuttled back and forth between my domain in the Pediatric Emergency Department and the general ER, pinch hitting the “simple” cases so that the adult ER specialists could attend to heart attacks and strokes.

A guy in his late 30’s had fallen off a ladder while cleaning the gutters on his house.  Unfortunately, he landed on his bum, causing two of his lumbar vertebrae to pancake together.  The neurosurgeons were wheeling him to surgery, but the prognosis was grim: they did not expect him to walk again.

His wife was huddled in my arms, weeping uncontrollably.  He had been laid off from his skilled factory job (no unions in that town).  They were patching things together, with their two oldest boys–they had five–and the father, growing a landscaping business, just starting to climb out of the hole.  Christmas was coming, and they had no health insurance.

“It can’t get any worse!  It can’t get any worse!”  She chanted this over and over.  I tried in vain to comfort her, or at least shut her up, because I know one thing very well:  it can always get worse.

It got worse right then.

The special radio that communicated with the ambulances crackled to life, giving us a quick briefing on the critical patient they were bringing us.

A 17 year old white male, motor vehicle accident, multiple major trauma.  This was my case, since he was under 19.  I peeled the poor lady off of me, apologizing, and ran to get the trauma team ready.  Readiness is everything in the ER.

He was banged up, all right, and needed lots of attention from the surgeons.  I got his vital signs stable and turned him over to the OR team, then stripped off my blood-soaked outer gown and wandered back into the main ER.

The unfortunate wife was still there, now huddled in the arms of the social worker.  Uh-oh.  The social worker was only called in at night when there had been an unexpected death or some similar disaster.  I strolled over.

The wife saw me and burst into even more violent sobs.

“Y-you know you s-said it could always get worse?” Her voice edged on hysteria.  “That boy you just worked on.  That’s my oldest son!”

I still tear up when I write this.  

She didn’t have to say another word.  I knew exactly what was driving her panic.

Her two breadwinners, smashed up, facing long hospitalizations, surgeries, rehabilitation, long recoveries.

Her other four kids, the youngest in kindergarten.

Their home, nearly paid for…but not quite.  They would lose it.

Their fledgling business, down the tubes.

Bankruptcy, in those days (the 1990s) highly stigmatized, especially in the ranks of skilled laborers.  

Public Assistance.  Their children would be ostracized.

Medicaid.  At that time, there was only one doctor in town who accepted Medicaid patients.  His waiting list for new patients was out the door and around the block.

This is why we need universal health care.

Medical disaster is the #1 trigger for personal bankruptcy.  This is not due to “poor planning,” as some of those in Washington (and many voters who, justifiably or not, feel financially secure and don’t like to share) like to preach.  There are literally thousands of ways to plan very well, only to have disaster leap out of hiding and gobsmack you.

If you doubt that investing in America’s health, and by that I mean the health of ALL Americans, is “good for business,” consider this: 

Healthy women make healthy babies.  Healthy babies require well child care.  Healthy children grow up to be healthy adults, who require much less healthcare spending than do sick adults.

Healthy adults enter the workforce, where they contribute to the economy, resulting in a net gain in productivity, which will offset the initial investment in their healthy childhood.

After this initial investment in maternal-child health, at some point there will be a small percentage of children and adults who have congenital or acquired conditions, such as diabetes.  With appropriate healthcare, many conditions are so manageable as to make their economic impact negligible–but only with active management.  The flip side is a deficit both in functional health and productivity.

Health is wealth, in the words of my late grandfather, a tradesman who became disabled, lost everything, and never recovered.

Health.  Is.  Wealth.

Is that not a simple concept to grasp?