Johnna Stahl’s Blog Memorial

Memorial for Johnna Stahl, aka painkills2 of All Things Chronic, is happening NOW. Click on the original post and stop by to read, watch, and listen to tributes to our dear Johnna, and to leave one of your own, if you wish.

Life of an El Paso Woman

Hi everyone. Today we celebrate our fellow blogger and friend Johnna Stahl’s life. Johnna’s loved ones held a memorial for her Friday in Houston. Johnna’s sister, Mary shared this beautiful video of Johnna’s photography and memorial with me. She asked me to share it with the blogging community. Please feel free to share any memories you have of Johnna aka painkills2 from the All Things Chronic blog in the comments. Feel free to also share poems, quotes, music and/or general comments. Johnna will be missed by many.

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I’m so glad I had the pleasure of meeting her last July in Albuquerque. She was very nice and fun to talk to in person and via e-mail. Johnna was a huge supporter of my blog and writing career. She encouraged me to start writing my book and continue freelance writing after a five-year break. Although I haven’t finished the book yet, I intend to finish it later this year or in early…

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Too Damned Hot Already!

95°F=35°C= too damned hot for the month of March, even in Southern Arizona.  But wait, “there’s no such thing as climate change.”  That must mean that it’s now normal to have temperatures >15 degrees above normal, in a sustained fashion, two years in a row.  OK, I’ll try to squeeze yet one more incongruity the size of Texas into my pea-sized brain.  

For reasons that are well explained by Ayurveda, my tongue got the word about the heat wave first:

That thing that looks like a small liver on the underside of my tongue is an aphthous ulcer.  It’s the classic “punched out” kind.  Makes me feel pretty damned punched out, let me tell you.

That was a few days ago.  The ulcer kind of propagated into the back of my mouth and throat.  I’ve been literally living on aloe vera juice and coconut water, which I leave in the freezer and sip on.

It occurred to me that this was rather more ulcer-ness than I’m used to.  I get them every few weeks or months.  A Crohn’s thing, you know: it’s a “mouth-to-anus” disease.  Meaning that, lesions can occur anywhere in there.  And do.  

My brain survives and at times even thrives, by continuously scanning for outliers.  That’s how the prey animal survives.  That ripple in the tall grass that wasn’t there earlier?  Lion.  That shadow in the water?  Crocodile.  

Those bizarre mouth ulcers?  Could be just the ol’ Crohn’s monsters.

And on the other hand…there’s lamotrigine (Lamictal®).

Ever since I landed in the hospital in 2001, and ever since the amateur psychiatrist who tried to kill me with every antidepressant under the sun nearly succeeded, and ever since she thankfully went on vacation and left her on-call beeper with the brilliant neuropsychiatrist who correctly identified my brain as bipolar, I have faithfully taken my “L&L cocktail” every day.  Lamictal in the morning, lithium at night.

It’s worked better than anything else.  It’s been my staple.

There’s a problem, though.  It’s been a theoretical problem, till now.

Lamotrigine has one major potential adverse reaction.  It doesn’t happen often, but when it does, it can be devastating.  It’s called Stevens-Johnson Syndrome.  (The linked article downplays what the syndrome really looks like….)  It’s a known and much-feared adverse event that’s associated with Lamictal.  That’s the reason for the very slow dose buildup, if you’ve ever taken it, and the huge black box warning that says if you ever get these nasty lesions, stop taking Lamictal immediately.

My tongue up and turned completely white, then started peeling.  I put my Lamictal away.  Increased the lithium dose by 25%, got out some high CBD cannabis to help with the transition.

If you take medicine for brain stuff, you just naturally deal with side effects.  How not?  Most of this shit we dump into our bodies, no one has any clue what they actually do, outside of the one thing they have to look at for the studies.  Beyond showing that this does or does not increase dopamine levels in the brain, for instance, researchers are not able to predict every single one of the thousands of other chemical interactions a medicine may set into motion all around the body.

Fortunately most side effects are merely unpleasant but not life-threatening.  Stevens-Johnson is extremely unpleasant and also life-threatening.  You just don’t want it!

Lithium has its bad side too: kidney failure holds down the position of real bad actor.  But lithium won’t kill you today.  It might take decades.

On the other hand, Lamictal’s dark side will put you in the burn unit…or the grave.  Right quick.

It’s a terrible choice to have to make: my sanity or my life!  There’s no percentage in trying to gamble with Lamictal, once these mucous membrane lesions appear.  There’s no guarantee that a break from the drug will fix the problem.  For me, this is the red line.  No more.

So what am I gonna do now?

Well, I’ve increased my lithium dose.  That means I have to be incredibly careful in this heat, because lithium can become toxic via dehydration.  And since lithium has a diuretic effect, that makes it even harder to stay hydrated.

I’m making plans to move to somewhere cooler after the end of the month, when I have my hand surgery recheck.  Oregon is sounding good to me….

And yes, my medical cannabis is once more doing yeoman’s duty.  I read an abstract of a study that looked at using CBD to treat psychosis.  Holy crap, the stuff holds up alongside conventional antipsychotics, with absolutely zero side effects!  I’m on that bus.

Palestinians children pretend to execute Israeli soldier | Daily Mail Online

http://www.dailymail.co.uk/news/article-4304924/A-sick-new-low-foreign-aid.html#ixzz4bBZjzdyR

Want your eyes to bug right out of your head?  Just for fun, read this article.  You’ll get an eye-opener, all right.  I have to giggle a bit at the outrage of righteous Brits, discovering that their millions of pounds are being used to glorify terrorists and terrorism.  Brits who under the best of circumstances have a hard time deviating from the straight-laced upfront meat-and-potatoes, bless them.  The very idea that British charity should be used to pay non-existent public servants, to put on school plays about how to execute Israeli soldiers!

Well, at least the American Reform Judaism people aren’t falling for that!  Nope.  I hear that an extended, ecstatic Kumbaya session resulted from Rabbi Rick’s goodwill mission to Ramallah.  Hope he’s not a vegetarian.  I hear Abu Mazen throws a mean kebab party!  Make mine limonana, I’m not drinking today.

The Road To Hell

….is paved with bright lights and dim bulbs.

When Retirement Comes With a Daily Dose of Cannabis | Patients for Medical Cannabis

https://patients4medicalmarijuana.wordpress.com/2017/03/11/when-retirement-comes-with-a-daily-dose-of-cannabis/

Night on the Rack

Sleep is supposed to be restorative, or so we are taught.

Last night proved anything but.  I lost count of the awakenings occasioned by the loud complaints of various joints and their wounds. 

At 0230 I arose and rummaged through my bandage box, half asleep but unable to finish the job because of the excruciating hypersensitivity of the skin overlying the destruction in my wrist.  It feels like a remake of the RSD from 30 years ago…can that be?  I don’t know, but it is so stupidly sensitive that the mere touch of my well-padded wrist brace feels like liquid fire.  That’s what RSD feels like.

In between excursions to the bathroom and to the bandage box for a piece of biogel to put over my wrist bone, my night was spent in my mind’s idea of a torture chamber.

The scene:  I am conscious that I have been brought to this torture chamber to be “interrogated.”  I have no idea why.  The torturer is probing my mind for vulnerabilities.  At the same time, I am probing my mind for strengths and strategies for survival of what looks to be a prolonged ordeal.  I have no facts to give up, no-one to betray except my own autonomy.  

For that’s what’s at stake, isn’t it?  That’s the thing we, or I for one, most fear losing: autonomy, self-determination.  Aside from mobility and self-expression, that’s what I stand to lose from prolonged torture.

He is sizing me up.  He’s making pleasantries.  I play along, playing for time.  I know he knows that’s what I’m doing.  “Just doing his job,” that’s all.  I ask about his family.  He laughs.  

He wants to know which kind of pain I fear most.  What??  Does he think I’m actually going to answer that…correctly?  Surely, if I say “burning,” he’s going to burn me?!  But wait, if I say “burning,” he’ll know that I’m trying to deflect…no. I’ll say “all kinds.”  I fear all kinds of pain!

He laughs again.

Maybe, he muses, what we need to do, in order to properly sort this, is to try…a sampler.  That way we can explore a variety of stimuli, to see what works best for you.  Pain is such an individual thing, you know…

I’m awake again.  The sky is growing faintly pale.  I decide to get up and enjoy the coolth of the dawn morning.  It’s going to be another blazing day in Paradise.

FROM RUSSIA, WITH…

http://www.vox.com/conversations/2017/2/22/14697718/donald-trump-putin-russia-kremlin-hillary-clinton

I know I’m naive.  And I know my mind likes to take things apart into itty bitty bits, in the hope of making sense out of sensory input.

The New Regime has had my poor head spinning around on its stalk faster and faster, till all I can do is cry out in agony, “Ghost of Ronnie Raygun, please dazzle some yea or nay into this Doublespeak word salad!”

And so it was that I found the above article.  The light has been dazzled, and now I’m afraid to hit “PUBLISH.”  It’s worse than I thought.

That Big 420 In The Sky

Our dear friend Johnna has left this life.  We’re not exactly sure how or when.  More news soon, I hope.

In the meantime, I’m thinking of her fondly, wondering what she’s doing now.

What a dope!  I know what she’s doing!

In that Sweet Home in the Sky it’s always 4:20!

So as I light up, I’ll sing a little tune, and meditate on the Johnna quote for the day:

“I don’t care whether it’s Indica or Sativa. I care if it’s strong.”

How To Conflate Cause And Effect

My recent orthopedic woes, surgery, bad news, and more surgeries looming on the horizon have severely cramped my camping style.  I think this explains my obsession with reading everything about the current administration that I come across.  Or, I may simply be so astonished that anything like what’s going on in the world could go on, that I’m trying to make sense of it by attempting to rectify what seems to be Doublespeak with what seem to be plain facts.

Democrat, Republican, Independent, Libertarian, and anything in between, I read them.

I read the Columbia Journalism Review, not because I care for their politics, but because their fire-in-the-belly journalists mine the known facts and bring objective proofs of actual events: an antidote to “alternate facts.”

I’m reading 1984.  My jaw drops when I read Orwell’s description of Doublethink, which is a technique for altering incoming objective information in the service of rectifying it with the dictated alternate version of that reality.  For instance, in the face of massive unemployment, Big Brother waxes ecstatic about the “booming” economy and 100% employment.  The people must believe this, even as they slurp the government rations of unidentifiable soups and hard bread.

In the same vein we have Doublespeak, which is a technique whereby facts on the ground are manipulated to prove a completely unrelated point replacing objective fact with “alternate facts.”

I’ve taken to writing my Congresspeople.

First I wrote to Ted Cruz about the Texas-size state of Texas defunding Planned Parenthood at the state level, and his determination to push for defunding at the national level. I explained that Planned Parenthood provides desperately needed preventive services for women who otherwise would be doomed to a life of cranking out one baby after another, jeopardizing their own health in the process.  Due to the dearth of OB/GYNs who accept Medicaid, these women would not have access to preventive services such as cervical cancer screenings, breast exams, and of course, contraception, to prevent unwanted children.  And yes, some branches do provide abortion services.  Is it right to send these women back to the Dark Ages where thousands of women died from infection and perforations due to DIY and “back-alley” abortions?

I was honored that he wrote me back.  Maybe the M.D. caught his attention.  Maybe he thought I might be one of those evil abortion doctors.

In any case, his answer was, “Abortion is killing, and I am 100% against it.”

Ted is entitled to his private convictions.  I respect his opinion.  I even share it a little.

On the other hand, I would never think of pushing my own religious beliefs or personal agenda on a whole state, or a whole nation.

What happened to “government for the people, by the people?”  

And whatever happened to a free market economy?  It seems to work when pipelines and mines are concerned, but not for grass roots businesses that pour billions of dollars into the economy, and are growing like the plants that fuel them.

Yes, I’m talking about my favorite plant: marijuana, more correctly called cannabis.

As soon as Jeff Sessions was confirmed, I started writing to Congresspeople.  I got a letter back from another one from Texas, saying that he was vehemently against cannabis because it “is a schedule II (sic) drug that causes cancer, addiction, crime, deaths, and addiction.  There’s no medical benefit and no research that shows any medical use whatsoever. And he’s a doctor so he knows these things.”

What?

Regardless of his personal beliefs, I would imagine that in the service of his constituents (the ones who are working to get a Compassionate Use waiver for end-of-life and cancer care), he would have at least read the mainstream news in order to be able to sound kind of educated.

So much for public servants actually making an effort to “serve.”  If my views differ from theirs, I either don’t exist or else I’m the enemy.

Now I’d like to look at the mire of attribution of cause to phenomena.

Let’s say there is a thunderstorm with rain, wind, thunder, and lightening.  A lot of phenomena going on.  They seem to have a causal relationship.

Thunder makes a boom.  Then it rains a lot.  Does the boom of the thunder cause the rain?  They happen during the same weather episode.  Often a loud clap of thunder heralds a downpour.  Makes sense that thunder causes rain, right?

Let’s return to cannabis.

Articles in the American medical literature abound with speculation about the evils of cannabis.  I consume these as ravenously as I read the news.  I want to know what they’re saying, and if they’ve paid any attention at all to the situation on the ground.

Unfortunately, they haven’t.

There’s a focus on how cannabis “causes” mental illness in general, schizophrenia in particular, and of course, no article on a psychoactive “drug” would be complete without accusing cannabis of being addictive in itself, and of course a gateway drug to heroin.

Um, no.

The reason people with serious mental illness often use cannabis is that it makes us feel better.  You know that word “euphoria?”  It comes from the Greek roots “eu,” meaning “good” or “normal” (as in “euthyroid.”

What’s bad about feeling normal?

Example: I didn’t use cannabis from June 30, 1981, until some time in the winter of 2013.  At first I was in active medical school, residency, and practice.  I have never, and would never, use any kind of psychoactive substance while taking care of patients.  Except alcohol, of course, even though it’s poisonous.

During that span of time my bipolar disorder got worse and worse.  Why wouldn’t it, given that I was on in-house call every third night, working 120 hours a week in a hostile environment?  The shrinks gave me pills and more pills until I was swallowing handsful of tablets and capsules.

Among other things, I was on two different benzodiazepines for PTSD.  They helped in that they knocked me out so I could sleep.  After a while I developed tremendous anxiety about what might happen if I didn’t have my knockout drops. Isn’t that one of the signs of addiction?

Oh, and if the benzos weren’t enough, I was on Ambien too.  10 mg, sometimes 20 if I was manic (5 mg is the currently recommended dose.)

I think it was the physical pain that lead me to try cannabis again.  It was a pleasant surprise.  The pain went away for a few hours.  For a few precious hours, relief without the mental clouding of narcotics.  I became a believer.

Now I’m experiencing a different kind of relief.

It seems that while I was treating my physical woes, something was also happening in my squash.  I began feeling kind of normal again, whatever normal is.  Differently put, the feeling of constant struggle against an unseen enemy perceptibly lifted.  I started feeling sleepy in the evenings instead of eyes wide open with hypervigilance.  Hmmm.  I began a long, cautious taper of the nighttime sledgehammer cocktail.  In its place I substituted a carefully tailored treatment regimen of cannabinoids.  I studied, took courses, and learned how to use the plant as medicine that incidentally caused good feelings.  Win-win.

It took a few months, since I went very gingerly so as not to trigger benzo withdrawal, which can cause studies and can even be fatal.  I’m happy to say I’ve been benzo-and-Ambien-free for four months.  

Mine is not a unique story.  Even the mainstream medical literature is grudgingly reporting on how cannabis has proven useful in weaning people off of opioids, even in cases of longtime addiction.  So much for the “gateway drug” hypothesis.

Crime?  Mr representative, have you paid no attention to the decrease in violent crime in states that have adult use cannabis?  Who wants to go commit crime when they’re having a love-fest?   True, the drug cartels are trying to make use of the normalized status of the plant to their own ends; but the benevolent Powers That Be in Colorado are taking enormous steps to curb that destructive yet predictable reaction to legalization.

As far as addiction, the numbers are in from legal states, and they show that in the years since legalization, prescriptions for opioids have dwindled by about a third.  Who needs a potentially lethal drug with awful side effects including addiction and death, when you can have euphoria from an herb whose side effects are minimal, and which has never in history caused a death, with the exception of rare cases where someone didn’t read the label (you know, the one that says “do not drive or operate heavy machinery”)?

I’m not saying that everyone can get off benzos or successfully treat their pain with cannabis alone.  It’s not for everyone, as the heinous poison marketing campaigns on TV like to say in their rapid-fire “fine print” disclaimers.

At the end of the day, it’s clear that we need to develop our critical thinking muscles.  Unless things change radically and quickly, we’re going to need them real bad.

Hands Down

Do you have two hands that work?

If no, you have my deepest sympathy.

If yes, I suggest you put one of them in your pocket or behind your back.  Got it?  Good.

Now go wash your hair.

This has been my life since the summer of 1993, on and off.  Mostly on.

I’ve had four hand surgeries since then: three on my left and one on my right.

I won’t elaborate on the proximate cause of the situations leading to these surgeries.  I may finally get around to editing and posting the story of Costa Lotta Jack, the evil Appaloosa who tore my wrist bones apart back there in ’93.  Now is not the time.

Let us begin with the premise that my left wrist was destroyed in 1993 by an evil Appaloosa named Costa Lotta Jack, which lead to my first wrist reconstruction a few months later.

That repair worked so well that I was able to relearn to play the banjo and fiddle.  Not the way I played it before: I lost a lotta wrist action in that fight.  Good enough to cut a solo CD that still tops the folk charts, although it still hasn’t paid for itself.

Six or seven years later, that repair broke down.  Another reconstruction.  Lost some more range of motion with that one, but managed to keep playing music once they pulled a couple of steel pins out of my wrist.

And so on until a year ago, when I had a big crash and burn from tripping over a barrier between two campsites in the pitch black new moon dark.  The hand surgeon in Flagstaff was sure it was a tear in the joint capsule, and the MRI with contrast demonstrated the same.

And by the way, my shoulder started hurting then.  And it seemed to have jolted something loose in the minefield otherwise known as my neck.

So began my love affair with Flagstaff, Arizona, home of many orthopedists.  Hallmark of a ski town.

I got tired of running to doctors after awhile, and decided that some benign neglect might do me some good.  Or you might say I was sick of hearing that I needed this operation and that operation.  Really burnt out, if the truth be known.

Off I went, tending to this and that family emergency.  My wrist and shoulder and neck still felt bad, but not as bad as running to doctors.

When I landed in Tucson for the winter, it made sense to make friends with a local orthopedist about my shoulder, and with a hand surgeon about my wrist.

I had my initial consultations taken care of, and a return visit to the shoulder guy for an injection into my subacromial bursa, which is a fluid filled sac in the shoulder.  It didn’t help.

Then, toward the end of January, I had a terrible fall that tore the shit out of my rotator cuff and did something bad to my wrist.

I went immediately to the hand surgeon, who scheduled surgery, and to the shoulder guy, who sent me directly from his office into the nearest MRI machine.

The MRI shows two full thickness tears in my rotator cuff muscles.  As a bonus, I split the tendon to my biceps muscle in two.

But I’m getting ahead of myself.

I had my latest hand surgery 8 days ago, I think.  I’m still a bit addled from all that has gone down, so if I get things out of order, that’s why.

I’m told that the surgeon came and talked to me after the operation.  I can’t remember anything, because I was waaaaaaaaay over-anesthetized.  That can happen, especially if the anesthesiologist doesn’t listen when you tell them there is a very big reason you resist general anesthesia.  Some of us need a much lighter hammer.

I had rented an Airbnb room in which to recover for a week, boarded Atina the Doggess, and settled in with my vaporizer and edibles (I don’t do well with opiates).  I hired people from a local home health agency to drive me to the surgery and back and go to the pharmacy and Trader Joe’s for 24 bottles of Trader Joe’s brand seltzer water.

That night, or maybe the following night, I got two phone calls, one from each of my guys.

Shoulder guy: “Well, you have two high grade tears in your rotator cuff muscles, plus your biceps tendon is split.  Other than that, your MRI looks great (except for the rough place underneath another muscle that shows it is getting squashed by something else).  You should be able to put off surgery for a few months…provided you don’t fuck it up again in the meantime.”

He didn’t use those words exactly, but that’s what he meant.

Next call was my hand guy.

“Um, how are you feeling?”

“Just peachy.  What did you find in there?”

Pregnant pause…then he said:

“Oh sweetheart….”

WTF, my surgeon is calling me sweetheart, and I want to know why.

“I’m so sorry.  I thought we were just repairing your joint capsule, but when I got in there with the scope I found that your triquetrum (one of the 8 bones in the wrist) was rattling around loose in the joint, no ligament, no cartilage, no blood supply…so I had to take it out.  Really should have done a first row carpectomy (procedure that removes a whole row of those little bones because once they’re fucked up they don’t heal), but I didn’t have a permission signed for that.   We’ll have to watch this carefully and maybe plan that operation for the future.”

Instead of bawling, I said (with considerable irony),

“Well then.  I suppose I’d better sell that new guitar.”

“Oh, no, no, don’t sell your guitar!  We’ll get you back playing!”

Nice one, Doc, but I’ve been around this block a whole bunch of times.  I didn’t fall off the turnip truck yesterday.  I know as well as anyone else what happens when you start taking out bones.  It’s a slippery slope.