…In Which I Try Something Altogether New And Different

My recent posts have been lame and few.

Depression is largely to blame.  So is pain.  I wouldn’t go so far as to chalk my depression up to pain, as I’ve been suffering from depression literally all my life; but it sure is hard to get un-depressed when struggling in the grasp of unremitting pain.

I went to see an orthopedist about my shoulder.  He seemed like a decent sort.  I was struck dizzy by the splendor of his haberdashery.  His colors were straight out of the last Laura Ashley paint swatch book I consulted for a vintage room re-do.  

I had to drag myself away from admiring the knife creases on his shirt sleeves and trousers, the precise correctness of the diagonal striped tie….

The shoulder.  Oh yes.

It feels like how your shoulder feels after a **really good** flu shot.  You know, the way you slink around trying real hard not to bump into anything, and of course you do, because you always do, except you don’t normally notice it because your deltoid muscle is normally not all hot and red and swollen and sore.

You try to move your sore shoulder around, because you’ve heard that moving it around helps…with, oh, something.  I can’t remember.  The only thing that helps is Time.  Tincture of Time, that great healer.

So it goes with my shoulder.  It’s been hurting for several months.  I’ve given it gallons of Tincture of Time, to no effect.  In fact, it’s getting worse.

So it was that I came to visit Dr. Haberdashery on Friday last.  He took no x-ray, but put me through a rigorous demonstration of my range of motion, marveling at my flexibility (quite!).  I yelped and complained of pain, but forced my upper extremities into all sorts of contortions–in order to prove, I suppose, that I’m not…something.  I have a morbid fear of being thought a fake.  I believe this comes from having been accused of faking various things like asthma, which I got from inhaling my mother’s cigarettes since before I was born.  So now I feel like I have to demonstrate how hard I’m trying, to show how rigorously I’m adhering to my physical therapy regimen…which, in truth, I’m not really, because I’m simply hyperflexible.  I have abnormal collagen.  I can pop my shoulder right out of its socket!  

The diagnosis (sans x-rays) is arthritis.  The treatment: increase my celecoxib for a couple of weeks; then if no improvement, consider steroid injection.  If no relief with that, consider surgery to “decompress” the joint by grinding off the bone spurs.  Dr. H quoted the numbers: 80% get relief from this surgery, 20% don’t.  Better than back surgery, but still more risk than I’m willing to take at this point.

After my bout of calisthenics in the way of physical examination, my shoulder started feeling like a tensely  swollen and exquisitely tender softball.  Getting dressed/undressed is a new kind of challenge.  I quickly learned that pullovers are not a good idea.  I got trapped with a sweatshirt over my head and no way to get further in or indeed further out!  

Just because I needed more pain, something in my thoracic spine went “pop”a couple of days ago, and now it hurts to cough, or breathe, or move, or do anything….

So now, if you include my wrist that needs surgery (I do), I have three active areas of acute pain on top of my entire spine and the rest of my joints, which provide a kind of basso continuo for the baroque dance that is my Pain Body.  

So, did Dr. Haberdashery send me away with any pharmacologic relief?  Aw, come on…you know the answer!  Of course not.  We’re in a national epidemic of…something.  No, pain medication is no longer a menu item–not that it has been, not for many years, for me anyway.  Maybe it’s the brain diagnoses.  My experience has been that I’ve had to beg for pain meds, even tramadol.  This guy had “Please don’t even ask” written large all over his vintage green shirt.  I didn’t ask.

Up in a high cabinet, in a box with teas that I use infrequently, are a couple of packets of Mitrogyna Speciosa, also known as Kratom or Ketem.  It’s an herb that teeters on the brink of making the DEA Schedule I list. In fact, it was scheduled to be scheduled this past December.  In an unprecedented move, tens of thousands of people wrote to the DEA requesting that Kratom be saved from the list, that it not be torn away from law-abiding Americans who want to stay law-abiding and not have to scramble around in the darkness of the black market to get their medicine.  Sound familiar?   

Why does the DEA want to sequester Kratom?  Is it really as bad as heroin or (gasp!) cannabis? 

Well, not really.  In fact, Kratom simulates mu receptors, which is what opioid medicines do.  It’s a mild pain medicine, rarely results in addiction, and is extremely useful in helping opioid addicts to detox with hardly any withdrawal symptoms.  

We can conjecture why Big Pharma wants Kratom off the market.  With such valuable properties, people might not need a whole subset of expensive pharmaceuticals–anything from naloxone, which has risen in price some 1,000% (yes, that’s right) since the CDC’s initial report and the subsequent media blast about opioid epidemic, and the very real heroin epidemic that spits out scores of overdose victims daily–to fentanyl patches, to the drugs used by the “recovery” industry: buprenorphine and Suboxone being the contenders here.

Kratom can contend with the contenders in a number of contexts.  I’m not an expert–the opposite–so please fill me in, in the comments.  I’m just here to report my personal experience.

Which is: I was going mad with pain.  I had bought some sample-size packets of Kratom powder.  I took some.  I felt better.  Much, much better.  Still painful, but bearable.  Liveable.  Much better.

I’ve been afraid to try the Kratom because of fear of side effects.  The chief side effect is nausea and vomiting.  This is hailed by Kratom users as a built-in overdose preventer:  If you take too much, you puke and that’s that.  I’m not 100% convinced of that, but I have a lot of research to do, now that I’ve dipped my toes in the green waters of Kratom and lived to feel better.

And what about my legal medical cannabis?  Isn’t that supposed to be a panacea?  Why do I need something else?

Let me tell you, if I were to take cannabis sufficient to blot out this pain, I would be blotted out myself!  I do medicate at night very heavily, using a powerful coconut oil infusion that I’ve baked up into brownies…and what brownies they are!!!  Knockout drops.  If I got that medicated in the daytime I wouldn’t be able to stand up.

Which brings me to another Kratom advantage.  In low doses it’s a stimulant.  In high doses it’s a sedative.  Now, I haven’t found any definition as to what constitutes a “low” or a “high” dose.  I suppose it’s individual.  I started out with a gram yesterday, got some pain relief with that, and increased my dose to 1.5 grams today.  Better pain relief, felt a little bit high but clear and alert.  Decent!  Tomorrow I might try 2 grams.  

Have you tried Kratom?  What was your experience?

Alice B. Toklas Rides Again…and again…and again…and….

Chocolate.  More chocolate!  Gluten free.  And….medicated!

Yes, I tried a piece hot out of the oven.  I need the medicine, and the chocolate doesn’t hurt. It’s medicinal, too, after all.

The wind is kicking up a ruckus outside with the kinds of cactus that blow around so they can stick in your dog’s feet the next day.  It contributes in a bad way to my current state of ultra-ultra-ultra rapid cycling, punctuated by a few episodes of the dreaded mixed state.

I used to take Seroquel for this.  I’m not sure it broke the cycle, but at least it knocked me out so I could get a break from it.  But I started getting very bad neurologic side effects from the Seroquel, and had to stop it.  Some of the nervous system damage has turned out to be permanent, so there’s no way I’m going to try any other drugs in that class (atypical antipsychotics).  So in a word, I’m fucked.

But there’s a Lone Ranger on the horizon…I hope.

I have been so remiss in writing here that I can’t remember what I’ve told you.  Here, I’ll recap:

Spine pain got bad, had lots of consults, results: spinal arthritis, many collapsed discs, moderate spinal stenosis, and…drumroll…five vertebrae are filled with a benign tumor.  It’s benign, because it doesn’t metastasize, but it’s locally destructive.  And I have it in my liver, and god knows where else.

There are other joints in this pity party.  None of them are smokeable.

Which brings us to The Point:

I began using medical cannabis over a year ago.  It takes my spine and joint pain from “all-encompassing, intrusive, consuming” all the way down to, “OK, I can definitely feel this, and I think I’ll do the laundry and walk the dog now.”

That’s the difference.  Of course, I use a special strain of cannabis (PennyWise) that is engineered to have analgesic, anti-inflammatory properties while not being overly psychoactive.  I can get things done, and I’m not constantly going, “Ouch!  Shit!  Fuck!  Damn!” and so on.  Like, right now my thorax is aching and so is my neck and shoulders, but I’m not paralyzed by it.  Nevertheless, I am going to stop writing all hunched up, and go light my Hanukkah menorah.  Sixth night.

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.

A Very Bad Day

Flagstaff, Arizona, is a magical place.  Even the KOA Kampground (a chain that I avoid like the plague) here bumps right up against the Coconino National Forest.  Everyone is nice (well, almost everybody), and it’s just incredibly cool to go to the grocery store and listen to families talking to each other in Navajo or Hopi.  And unlike the Mescalero Apache, who are sick of white people, the Native Americans and white people seem to get along just fine, even though the Navajo and Hopi got a really bum deal at first.  In my opinion, before Americans start getting all self righteous about Israel, they need to give back all the land they stole from the Native Americans.  And I am serious about that. 

Anyway.

I met my new spine surgeon for the first time today and had a set of xrays that were shockingly worse than they were two years ago.  My cervical spine is starting to look not like a spine at all, but like some random stick, bent in the wrong direction.

A new finding is that I have zero reflexes in my right arm, very little in my left.  Strength was 0/5 on the left and 1/5 on the right.  I guess that explains why I have to use two hands for a lot of tasks, and couldn’t open any sort of bottle even before I fell on my left wrist, which is getting worse not better even though I keep it in a splint. I see the hand surgeon on the 11th.

I showed the doc my tremor and told him about the muscle spasms and twitches, and that I was worried about spinal cord compression causing that.

He said I might have cord compression, but that it wouldn’t cause those symptoms or my weakness and lack of strength, but MS would explain those things.

I have been thinking that myself, but to hear him say it was like another nail in my coffin.

So he ordered an MRI and referred me to Neurology to investigate the MS angle.

By some miracle, someone had cancelled their MRI slot, so I was able to have it done this afternoon.  The MRI techs were nasty and snotty, which did not help my emotionally fragile state at all.  When a neurosurgeon tells you you probably have MS on top of your spine looking surgical, it’s harder to let snotty technicians roll off your duck’s back.

So when I got back to my van and found that Atina had helped herself to things in my toiletries bag, and shredded stuff all over the floor, the bed..I went nuts.  Apeshit. I screamed at her.  Threw things.  Then I collapsed on the floor and screamed and screamed and screamed.  Atina tried to help me, but I wanted none of it, so she lay on the edge of the bed trembling while I lay on the floor screaming.

Everything hurts.  I have a headache, which I’ve had all day, from high blood pressure.  I take the damn pills for it, but today they didn’t work.  My BP was 152/95 even after my pill, so god knows what it would have been without.

Tomorrow I have to make all sorts of appointments, neurologist, Neurosurgery recheck, RV repair because more components are shitting the bed; and all I want to do is sit in my new chaise and get wiped out on cannabis and benzos to counter the paranoia from the THC overdose.  I might still, if I can get enough done in the morning.

People, it was a very bad day, and I have a feeling it’s going to get worse.  I’m carefully thinking about where that red line is going to be, and how to arrange things.  I have the means.  I have no interest in “palliation.”  I have no one to help me.  I can’t stand to be around other people, like in a care home.  I can’t stand strangers in my environment.

I’m in constant pain, I’m exhausted all the time, I drop things, I fall.  It’s getting to be that time.  I’m winding down.

The Rushing Waters of Time

The trees surrounding my perch in my tiny 6’x6′ deck have leafed out, mostly obscuring my view of the river.  The river has become my friend.  Its constant roar, modulated only by the volume of water crashing over the rocks of the small waterfall, used to give me a feeling of vague unrest, when I first moved into this primitive building.  Now I welcome its constancy, and the violent early-summer storms bring an exciting urgency to the swollen stream, as if by throwing itself over the waterfall it might relieve its own discomfort.

The waterfall, although small, is mighty dangerous.  There’s only one chute, and even at low water, or perhaps especially at low water, the hidden rock directly below the chute is a trap for inexperienced boaters.  The experienced ones take the placid flatwater bypass around the falls.  They know about the treacherous hole that awaits the nose of a kayak or canoe, to flip it over and dump its occupants into the swirling eddy.  If they’re lucky, they’ll get thrown free of the boat.  If not, they might hit their heads on the submerged rock, and if not rescued by their comrades, go the way of many an unsuspecting boater on this piece of an otherwise easy river.

I sit in my perch and grip the rail, as I would at any sporting event; except that this is not for competition or entertainment (except maybe in the boaters’ minds).  Whether they know it or not, this is a life-or-death moment.

I become morose sometimes, watching and remembering how I used to be an avid whitewater canoeist: the crazier the water, the better.  But these widow-maker rocks with a hole on the other side….no thank you.  I didn’t mind “going swimming” (the river runners’ term for getting dumped unintentionally into the water) occasionally, but notoriously dangerous falls were not on my menu.  I wanted to pull my boat out of the water at day’s end, exhausted and happy, and most of all, alive.

My body is past the point of boating.  Both of my wrists have been reconstructed, and the torque of a paddle even in flat water would be painful.  Whitewater would tear them right off my arms.  So I guess that’s history.  I am banished to my front-and-center box seat, where I sit and cheer the players on, breath held when they attempt the chute, applauding when they make it through, looking on anxiously when the scrape of boat on rock indicates a wreck.

Today two out of three in a party of four boaters bit the dust; or rather, went swimming.  The first boat, a two-seater, contained a couple of experienced and skillful boaters: they took their time, back-paddled for a bit, assessing the situation.  When they made up their minds that they were really going to shoot that rapids, they lined up perfectly with the chute, and paddled like mad.  They flew through the chute and hit the rock with the bow pointing up.  The boat shot up and they became briefly airborne, accompanied by amusement-park shrieks.  I could practically see their hearts pounding as they floated in the eddy and came to rest in the pool nearby the little beach opposite the falls.

Boater number two, a big guy in a single sit-in kayak, landed nose-down in the hole, got thrown from the boat–luckily, for he could have got stuck in the hole, or whacked his head on the rock and been no more.  As it was, he got himself scraped up on the rock.  Then he got caught up in the eddy while trying to get back into his boat.  He was altogether shaken, and when he finally got hold of his boat, he hauled it out on the small beach below the rapids.  The couple in the first boat paddled over and pulled out to help their wet and shaken comrade.  He had broken both paddles, which were fixed on his boat with oar-locks.

Boat number three fared no better.  Number four wisely took the flat-water bypass.

Sigh.  No more boating for me, not flat water, not rapids.  No more skiing, no more running.  No more this, no more that.

Thank God, I can still walk, although sometimes painfully.  I now use two hiking sticks: not for the exercise; rather, so as not to fall over.  My balance isn’t so good because of the weirdness of my spine.  I’m sure the effects of poly-pharmacy don’t help.

So today, being the Sabbath and having no other responsibilities, and the weather being perfect, I mixed up a spray of lemongrass and geranium oils, which makes a fine bug repellent; and taking sticks in hand, with with little Noga on leash because of the lamentably lush growth of poison ivy, set off on a walk into deep old woods.

When we got past the worst of the poison ivy I let Noga off the leash and she tore off, exercising her nose as much as her little furry legs.  I wondered if her anti-tick stuff was really going to work.  I would be sure to make a thorough examination when we got home.

The forest understory is rich with treasures now: blue and black Cohosh, St. John’s Wort on the edges, and miracle of miracles, some real ginseng.  There are lots of things that look like ginseng, but once you’ve seen the real thing you’ll never forget.  I used to have a patch of it in a little crease in my mountain, when I had one; but unfortunately my goats ate my ginseng instead of the multiflora rose they were purchased to eat.

At last Noga and I found ourselves swishing through the meadow that borders the creek, or “branch,” as they used to call it here.  The grasses were knee-high; both Noga and I became uncomfortable.  This year has already been a good one for snakes; and I am always wary of putting my feet or hands in places I cannot see.  A copperhead could easily be stalking the plentiful crop of frogs along the branch, hidden underfoot in the lush meadow.

So we turned tail and made for home.  The shadows were already lengthening, and by the time we got home it was dinnertime for both of us.  Leftovers from last night for me: Teriyaki salmon, home-made cole slaw, and a last-minute concoction of quinoa and various vegetables that tastes pretty good in spite of its improvised nature.  Dog food for Noga; she is disappointed, even though it is salmon-flavored dog food that cost me a fortune.  She gazed mournfully at my dinner, then grudgingly yet thoroughly ate hers.

I understand why so many “retired” athletes commit suicide.  One minute you’re out there tearing it up, the next you’re reaping the unfortunate consequences of the excesses of youth.  When I was young, I would never have applied the word “athletic” to myself.  Looking back, I glimpse myself running three miles a day, seven days a week, lifting weights three days a week, Shaolin Kung Fu every day, dancing Salsa/Merengue/Cha-cha several nights a week, running rivers on the weekends; and then, when I got too old for that, skiing daily, horseback riding daily, 6am aerobics–crazy stuff.

I never could do tennis because the first time I tried it I dislocated my elbow.  But raquetball was OK.

I see the pattern, and I felt it then: physical activity was my medicine.  I remember acutely how it felt to run off an incipient manic episode; or conversely, to run off an episode of depression, running until I “hit the wall” and pushing through it into exhilaration, the “runner’s high,” which lasted an hour or two before the Black Dog curled up at my feet again.

Now bending my elbow to wash down handsful of pills seems to be about as much exercise as I get in a day.  Even gentle yoga, which may feel good while I’m doing it, tends to give me a bad pain day on the following day.  But I am finding some serenity now.  I just determined that I had better accept the fact that my ass has its own postal code, and buy some larger pants.