Red Flag Warning

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Here on the shores of Lake Michigan, at a state park right on the dunes, all is peaceful after a line of thunderstorms whipped the lake into a froth of foamy breakers.

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As each five-foot wave recedes, it takes with it a hiss of sand that whisperes: “Riptide, Riptide….” that terrible current that will suck the sand from under your feet, sweep you up and before you know it, you’re bobbing around beyond the surf line, wondering how you got there.

A red flag with a “No Swimming” symbol on it cracks in the wind at the top of the flagpole.  Parents watch their children playing in the undertow, arms folded, chatting.  I bite my tongue, wanting to run and shake them and point to the red flag. 

The past few weeks have been frightening.  I’ve been swimming through the cloudy seas of dissociation since….well, ever since I turned my back on the beautiful West, where I feel grounded and relaxed.  That’s been a while.  Since the end of June, I think.  I remember it was beastly hot in Northern Arizona.  I came through Colorado, a lovely cool break, and headed for Michigan, where I picked up my new rig and camped in Michigan’s Upper Peninsula before schlepping all the way to North Carolina to get it registered there.

It was on my way back, via West Virginia and Virginia, that I realized I could only drive a couple of hours a day before becoming completely exhausted and having to stop for the night before mid-afternoon.

This is crazy.  I’m one of those fanatics that likes to see if I can break my own long distance driving records (that is, if I really want to get somewhere rather than noodling along enjoying the scenery).  I wanted to get back to the West, to high altitude, to the beautiful mountains and forests of conifers with their resinous fragrance.

I’ve been having bouts of exhaustion that come and go, for years now.  But this was beyond anything I have ever experienced.  I felt as if I were struggling with all my might just to hold on in the same place, as if some force were dragging me down.  The stifling humid heat.  That has something to do with it.  Any heat, anything warmer than 80°F, totally wears me out.  Add humidity, and I’m body slammed.  Can’t move.

I’ve been having spells of extreme muscle weakness, muscle wasting despite living outdoors…hard to do.  Muscles going into spasm, cramping up, having to stop whatever I’m doing to wait for the cramp to ease up.  My life.

I decided to make a stop at the Cleveland Clinic, to check this out

Like most medical encounters, this one involved several hours in the MRI scanner, many tubes of blood, referrals on to other departments, and I think by the time I get finished it will already be winter.

Since I had a few days in between appointments, I came up to Michigan to enjoy the late summer peace and quiet of the State Parks.
………………………….

I remember another day, in 1992.  A bright blue day on the island of Maui.  My Pediatric Trauma conference had happily chosen the beautiful town of Lahaina as our meeting place.  The conference venue itself turned out to be a sprawling 1960’s vintage resort with a golf course, etc., beach frontage, etc., and it cost a bloody fortune.  I booked a room in a Colonial era inn, graciously furnished, with a crystal clear swimming pool lined with handmade ceramic tiles–and at half the price of the awful resort. I was an habitual swimmer back then: I put in an hour every morning before getting my son up and off to school.  Thank God.

In those days I did not know I was bipolar.  All I knew was that I always felt restless and jittery, and was often depressed and sometimes suicidal.  I managed all of this-not very well-by exercising to the point of exhaustion every day, often swimming, running, weightlifting, and dancing in the course of 24 hours.  Sleep was an infrequent visitor.

So I swam in the beautiful pool in Lahaina, and took my spare suit to my conference meetings in my backpack, to swim in the resort pool at the lunch break.

Our Big Social Event for that meeting was to be a Real Hawaiian Luau (groan).  I was disappointed in the organizers’ cultural insensitivity (tourist attraction: Hawaiians!).  Maybe it was that I had just completed my Master’s Degree in Cultural Anthropology a few years earlier.  But it was the big networking opportunity of the year: attendance essential.

I arrived at the conference center’s private mile of beach a couple of hours before the luau was to begin.  I wanted to savor some solitary beachcombing while the other attendees were out with their golf and tennis.

Red flags whipped and snapped in the stiff breeze that churned the tall breakers into foam as they thundered onto the beach.  There was a storm in the South Pacific, but here in Hawaii the sky was a dark blue crystal dome.

I mostly grew up by the sea in New England, where the people and the waters can get downright crusty.  I took a look at the waves and decided that swimming was out of the question; so I shifted my shell collecting mission to the highest tide mark, a span of dried and decaying sea-leavings far up the beach.

The sun hung low over the western horizon, glaring straight into my eyes.  I put on my brand new $100 Bollé shades…my first expensive purchase “just for me” since landing the new job.  Ah, they fit perfectly.  Now to find the ultimate cowrie shell!

A cloud covered the sun.

A very sudden cloud!  Perhaps the storm…I looked up from my shelling.

I just had time to grab a breath and clap my hands over my brand new sunglasses when the wave, towering at least three times my height, crashed down on me.

Years of martial arts training saved my life then.  My body instinctively became liquid.  I went with the wave, flowing with it.  I knew if I fought, it would break me.  The wave had the force of the whole Pacific Ocean behind it.  I made like the seaweed that flows and floats and survives.

I tucked into a ball.  The sea bounced me across its floor.  I still hung on to those glasses.  If I was going to die, it would be with my new shades on!

At last, an eternity later, I bobbed up to the surface and gulped air.  I looked around in astonishment: I had come up behind the surf line, out where the boats were moored.

The swells were huge.  It felt as if I were floating up the sides of mountains, sliding into valleys.

Worse, so were the giant catamarans that took people on whale watching tours…hundreds of people at a time.  They bucked like gigantic steeds against their mooring ropes, their bows rising, enormous pontoons clear of the water, then crashing again as the rollers went by…

All around me, these juggernauts strained at their ropes, sending sheets of water over me with each crash so that it seemed every moment I was blinded again.

I finally drew a bead on the shore and struck out for it, body surfing whenever I could to conserve energy.  I swam up the back side of the waves and surfed down the front, over and over and over…why did the shore seem no closer than before?

The tide was going out, is why.  And it was taking me with it.

I swam harder, finally got to where I could touch bottom, and ran like hell for the beach.  But just as I reached knee high, my legs were sucked out from under me, and the sky clouded over once more…I grabbed a breath, and my glasses, and crash….I collapsed, rolled into a ball, bounced across the sea floor, and came up, an eternity later, right between the pontoons of a sea-going catamaran…about to crash right over my head!  I dived, and the shock of the boat crashing into the trough of the wave sent me rolling again, but this time to my advantage, as I was a few waves closer to the beach.  I started again, strong but pacing myself, knowing that I could get free of this rip current by swimming parallel to the beach…if only I knew how wide the current was!  It could be miles wide.  And I couldn’t afford to get caught in the shallows where the waves breaking would break me too…

I reached the beach and dragged myself through the sucking sand.  There it is!  The beach!  I was there.

Then the sun went out again…

This happened five times.  I lost hope of actually living through this thing.  The sea had a bead on my life, but I refused to go down without fighting to the last.

After the fifth wave, I caught a good one in to shore.  I rode it as far as the knee deep mark, hit the sand running and ran right up the beach to the hotel sidewalk and kept running until I hit the pool, where I floated on the calm water and washed the sand out of my hair, my boobs, my butt crack…my teeth…

I wondered that I was still alive.  Or if I was still alive.  Maybe I only thought I was alive, like those ghosts you hear of that don’t know they’re dead yet…why would I have been alive?

And I still had my expensive sunglasses.  Maybe that’s what saved me: I was damned if the sea was going to get my Bollés!

My waterproof geeky Casio calculator watch said it was time to go to the luau.  I dragged myself out of the pool and threw on shorts and Hawaiian shirt from my rental car.

By this time I was feeling it.

But if you’re a Pediatric Trauma specialist, you ain’t allowed to feel.  So you just open that gate and walk into that courtyard with the kitschy tiki lights and the very decent Hawaiian band and the luscious brown dancers with the coconut shells over their boobs….you eat the poi and the pig…doing battle with the sea is hungry work.

Red Flag Warning

image

Here on the shores of Lake Michigan, at a state park right on the dunes, all is peaceful after a line of thunderstorms whipped the lake into a froth of foamy breakers.

image

As each five-foot wave recedea, it takes with it a hiss of sand that whisperes: “Riptide, Riptide….” that terrible current that will suck the sand from under your feet, sweep you up and before you know it, you’re bobbing around beyond the surf line, wondering how you got there.

A red flag with a “No Swimming” symbol on it cracks in the wind at the top of the flagpole.  Parents watch their children playing in the undertow, arms folded, chatting.  I bite my tongue, wanting to run and shake them and point to the red flag. 

The past few weeks have been frightening.  I’ve been swimming through the cloudy seas of dissociation since….well, ever since I turned my back on the beautiful West, where I feel grounded and relaxed.  That’s been a while.  Since the end of June, I think.  I remember it was beastly hot in Northern Arizona.  I came through Colorado, a lovely cool break, and headed for Michigan, where I picked up my new rig and camped in Michigan’s Upper Peninsula before schlepping all the way to North Carolina to get it registered there.

It was on my way back, via West Virginia and Virginia, that I realized I could only drive a couple of hours a day before becoming completely exhausted and having to stop for the night before mid-afternoon.

This is crazy.  I’m one of those fanatics that likes to see if I can break my own long distance driving records (that is, if I really want to get somewhere rather than noodling along enjoying the scenery).  I wanted to get back to the West, to high altitude, to the beautiful mountains and forests of conifers with their resinous fragrance.

I’ve been having bouts of exhaustion that come and go, for years now.  But this was beyond anything I have ever experienced.  I felt as if I were struggling with all my might just to hold on in the same place, as if some force were dragging me down.  The stifling humid heat.  That has something to do with it.  Any heat, anything warmer than 80°F, totally wears me out.  Add humidity, and I’m body slammed.  Can’t move.

I’ve been having spells of extreme muscle weakness, muscle wasting despite living outdoors…hard to do.  Muscles going into spasm, cramping up, having to stop whatever I’m doing to wait for the cramp to ease up.  My life.

I decided to make a stop at the Cleveland Clinic, to check this out

Like most medical encounters, this one involved several hours in the MRI scanner, many tubes of blood, referrals on to other departments, and I think by the time I get finished it will already be winter.

Since I had a few days in between appointments, I came up to Michigan to enjoy the late summer peace and quiet of the State Parks.
………………………….

I remember another day, in 1992.  A bright blue day on Maui.  My Pediatric Trauma conference had happily chosen the beautiful town of Lahaina as our meeting place.  The conference venue itself turned out to be a 1960’s vintage resort with a golf course, etc., beach frontage, etc., and cost a fortune.  For much less, I booked a room in a Colonial era inn, graciously furnished, with a crystal clear swimming pool lined with handmade ceramic tiles.  I was an habitual swimmer then: I put in an hour every morning before getting my son up and off to school. 

In those days I did not know I was bipolar.  All I knew was that I always felt restless and jittery, and was often depressed and sometimes suicidal.  I managed all of this-not very well-by exercising to the point of exhaustion every day, often swimming, running, weightlifting, and dancing in the course of 24 hours.  Sleep was an infrequent visitor.

So I swam in the beautiful pool in Lahaina, and took my spare suit to my conference meetings in my backpack, to swim at the lunch break.

Our Big Social Event for that meeting was to be a Real Hawaiian Luau (groan).  I was disappointed in the organizers’ cultural insensitivity (tourist attraction: Hawaiians!).  Maybe it was that I had just completed my Master’s Degree in Cultural Anthropology a few years earlier.  But it was the big networking opportunity of the year, so attend I must.

I arrived at the conference center’s beach a couple of hours before the luau was to begin.  I wanted to savor some beach time alone while the other attendees were out with their golf and tennis.

Red flags whipped and snapped in the stiff breeze that whipped the tall breakers into foam as they thundered onto the beach.  There was a storm in the Pacific somewhere to the south, although here in Hawaii the sky was a dark blue crystal dome.

I mostly grew up by the sea in New England, where the people and the waters can get downright crusty.  I took a look at the waves and decided that swimming was out of the question; so I shifted my shell collecting mission to the highest tide mark, a span of dried and decaying sea-leavings far up the beach.

The sun hung low over the western horizon, glaring straight into my eyes.  I put on my brand new $100 Bollé shades…my first expensive purchase “just for me” since landing the new job.  Ah, they fit perfectly.  Now to find the ultimate cowrie shell!

A cloud covered the sun.

A very sudden cloud!  Perhaps the storm…I looked up from my shelling.

I just had time to grab a breath and clap my hands over my brand new sunglasses when the wave, towering at least three times my height, crashed down on me.

Years of martial arts training saved my life then.  My body instinctively became liquid.  I went with the wave, flowing with it.  I knew if I fought, it would break me.  The wave had the force of the whole Pacific Ocean behind it; I made like the seaweed that flows and floats and survives.

I tucked into a ball.  The sea bounced me across its floor.  I still hung on to those glasses.  If I was going to die, it would be with my new shades on!

At last, an eternity later, I bobbed up to the surface and gulped air.  I looked around in astonishment: I had come up behind the surf line, out where the boats were moored.

The swells were huge.  It felt as if I were floating up the sides of mountains, sliding into valleys.

Worse, so were the giant catamarans that took people on whale watching tours…hundreds of people at a time.  They bucked like gigantic steeds against their mooring ropes, their bows rising, enormous pontoons clear of the water, then crashing again as the rollers went by…

All around me, these juggernauts strained at their ropes, sending sheets of water over me with each crash so that it seemed every moment I was blinded again.

I finally drew a bead on the shore and struck out for it, body surfing whenever I could to conserve energy.  I swam up the back side of the waves and surfed down the front, over and over and over…why did the shore seem no closer than before?

The tide was going out, is why.  And it was taking me with it.

I swam harder, finally got to where I could touch bottom, and ran like hell for the beach.  But just as I reached knee high, my legs were sucked out from under me, and the sky clouded over once more…I grabbed a breath, my glasses, and crash….I collapsed, rolled into a ball, bounced across the sea floor, and came up, an eternity later, right between the pontoons of a sea-going catamaran…about to crash right over my head!  I dived, and the shock of the boat crashing into the trough of the wave sent me rolling again, but this time to my advantage, as I was a few waves closer to the beach.  I started again, strong but pacing myself, knowing that I could get free of this rip current by swimming parallel to the beach…if only I knew how wide the current was!  It could be miles wide.  And I couldn’t afford to get caught in the shallows where the waves breaking would break me too…

I reached the beach and dragged myself through the sucking sand.  There it is!  The beach!  I was there.

Then the sun went out again…

This happened five times.  I lost hope of actually living through this thing.  The sea had a bead on my life, but I refused to go down without fighting to the last.

After the fifth wave, I caught a good one in to shore.  I rode it as far as the knee deep mark, hit the sand running and ran right up the beach to the hotel sidewalk and kept running until I hit the pool, where I floated on the calm water and washed the sand out of my hair, my boobs, my butt crack…my teeth…

I wondered that I was still alive.  Or if I was still alive.  Maybe I only thought I was alive, like those ghosts you hear of that don’t know they’re dead yet…why would I have been alive?

And I still had my expensive sunglasses.  Maybe that’s what saved me: I was damned if the sea was going to get my Bollés!

My waterproof geeky Casio calculator watch said it was time to go to the luau.  I dragged myself out of the pool and threw on shorts and Hawaiian shirt from my rental car.

By this time I was feeling it.

But if you’re a Pediatric Trauma specialist, you ain’t allowed to feel.  So you just open that gate and walk into that courtyard with the kitschy tiki lights and the very decent Hawaiian band and the luscious brown dancers with the coconut shells over their boobs….you eat the poi and the pig…doing battle with the sea is hungry work.

Why Did Fentanyl Maker Insys Give $500K to Defeat Legalization? | Leafly

https://www.leafly.com/news/politics/fentanyl-maker-insys-give-500k-defeat-legalization/?utm_medium=email&utm_campaign=B2C%20News%20-%20Week%2035%20-%20Eng&utm_source=Sailthru&utm_term=Master%20-%20Engaged%2C%20Active%2C%20Passive%2C%20or%20New

Pain Awareness = Suicide Prevention

An excellent post on a topic that is difficult to think about, unless you are one of the people who needs opioid pain medication in order to live some semblance of a normal life.

Please visit Zyp’s amazing blog and share her well-researched and well-written posts. She deserves a wide readership for her prolific and always high quality content.

EDS Info (Ehlers-Danlos Syndrome)

Pain Awareness and Suicide Prevention

Coincidentally, September is both “Pain Awareness Month” and “Suicide Prevention Month”.

Judging from all the articles I’ve found discussing the link between pain and suicide, the juxtaposition of these two awareness campaigns is a fortuitous coincidence, a chance to raise awareness of the potentially deadly consequences of poor pain control.

Perhaps it can start some necessary conversations about how the withdrawal of opioid pain management could exacerbate suicidal impulses.  

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Feeling It

Today was rough.

Two days ago, my going-on-90, going-on-13 year-old mother texted me that the homestead was no longer for sale.  “Tell you why next time we talk,” she wrote, fishing for a phone call that she didn’t get.  I am sick of her manipulations.  I have run out of patience.  I really and truly do not give a fuck if she loses the house and ends up in a nursing home.  She and my late father a”h fought off my efforts to help them prepare for their old age.  Now it’s too late: old age took him away nearly two years ago.  Having no resources, my mother will have to get along as best she can.  A fine pickle, but I can’t do a thing about it.

Yesterday, my Chinese Martial Arts master (Sifu) called me.  I had dropped in to visit her and her sweet husband for a few days last week.  For some reason she decided that it was her responsibility, as my Chinese mother, to recount to me all of my failings and weaknesses of character:

“Lawla, why you always go one thing another?  Never stick anything.  That your really problem.  That cause all your health problem.  I tell you what, you perfectly healthy, excepting that.  You don’t love anything, only dog…” etc.  “I tell you these things only because, love you.  I.  Am.  Your.  Mother.”

Well, fuck a duck, what I need is more “mother” bullshit.  I reminded my Sifu that I was her “inside student” for eight years.  For eight years I spent a part of every day studying with, and helping, her and her ancient father, a Martial Arts Grand Master.  I lived under their roof, and under their orders, seven days a week, leaving only to go to work and to take care of my child, who was raised largely in their home.

Breaking the laws of protocol, I objected:  “Sifu, I disagree with you.”  I reminded her of a few things, like those eight years, my long education and years of medical practice, etc.  She had to concede that this was true.  Still, her rebuke stung.  I felt betrayed.  I still feel betrayed.  This woman, with whom I have shared so much, who has been the single greatest influence on my life, trashed me with one slice of her tongue.  And I slid right into her game by going into defensive stance.

Speaking of slices, this morning I was getting out of my RV and my hand slipped, causing my arm to slide across a piece of plastic on the door.  For most people this would be nothing.  But my skin has become very thin (my mother always said I should grow a thicker skin), and it ripped a big flap all the way to the fascia.  It was shocking to look down and see the white covering of my arm muscles.  Then the blood came, but not very much because my blood vessels have also atrophied.

Now the wound is covered with a burn dressing.  That’s what works best on these flap lacerations.  My arms are covered with the scars of tens of wounds that occur just in the course of daily life, doing things that never hurt or wounded me before.

Even my dog has learned to be very gentle with me, ever since she slashed my throat with her claws while attempting to engage me in play.  I screamed so piteously, partly from pain and shock, and partly just from being over-the-top, that poor Atina got the idea that I am very fragile, and likely to break.  Now she treats me like her puppy.  That’s fine with me.

Then I got the news about Blah’s passing.  She did what she needed to do, and I support her decision completely.  It still tears me up that I will never see her little dragons next to her wise and kind and thoughtful comments again.

I stopped in at a gas station for diesel and iced tea, and heard the guttural sounds of Arabic with a Judean accent, like I heard in Israel.  My blood froze.  Then I saw the crosses on the necks of the owner and her son.  I breathed out.

“Salam aleikum,” I said (that being about 1/3 of my Arabic lexicon). 

“Salam aleikum!” She shouted delightedly, and followed with a string of greetings that I didn’t entirely catch.  I understand quite a bit of Arabic, but unfortunately most of it is angry epithets and genocidal threats.  It was good to hear some kind and welcoming words.

This lady hails from Jordan, like so many Arab residents of Israel, and made her home in Bethlehem until the Muslims drove her family out (Bethlehem’s Christian population has shrunk from many thousands to only a handful of families who practice their religion in secret).  Now most of them live in Jerusalem.  She and her family chose to emigrate to the States.  She bought this gas station and convenience store, and now drives two hours each way to work.  She beams with pride.

In true Arab style, she asks me about myself, questioning me closely…very closely.  It’s uncomfortable to me, but having many Arab friends in Israel, I know it’s a sign of hospitality, so I go along with her and soon we’re intimate friends, holding each other’s hands, letting go only to give her the chance to serve other customers, most of whom she knows by name.

Although it’s not an Arab thing to question someone about their mode of dress unless they are blood family, I know she’s curious about my long skirt and long sleeved blouse on a hot summer day, so I dip my toes in the water and say it’s because of my religion.

“Oh, you’re Jewish?  I love Jewish!  Jesus was Jewish, you know,” she whispers confidentially.  Then follows an angry tirade about the Muslims and persecution of Christians and Jews, and a whole primer on the Arab Christian perspective. 

I was very glad to have met her.  It really made my day to hear her voicing thoughts that have been drifting into my head lately, about Israel, and about the wonderful fruits that are coming into the Shuk now: fresh dates, green olives in brine, pomegranates the size of three of the measly California kind, fresh figs falling off the trees going splat on the sidewalks (dangerous), melafafonim (cucumbers), dense and crunchy and sweet, apples that actually have flavor, grapes sweet as candy…I miss the sound of Middle Eastern music, the bustle of Jerusalem, the peaceful holiness of the many shrines I like to visit…the Old City, thronging with people in every kind of religious garb imaginable…

I don’t miss being spat on, or pissed on, called evil names, rocked, my clothes grabbed with the intention of pulling them off me (thank you, Sifu, they didn’t expect me to fight back).  Or shoved out of line at the bank or the Iriyah (municipal offices where you pay taxes and other municipal stuff) by women in burkas.  Thus my trepidation at hearing Arabic spoken in the store. 

The Jordanian Christian lady was mystified when, after we finally let go of each other’s hands, I kissed my hand that had been holding hers.

It’s a custom in my particular tiny niche of Israeli Orthodox Judaism.  It shows what a precious blessing it is to hold hands in a sacred way with someone you treasure.

Salam aleikum.  Shalom aleichem.  Peace on earth, good will to women and men.

Peace Be With You

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A Warrior Woman has left this world.

She slew her Dragon.

Let us celebrate her life.
Let us celebrate her release from its tortures.
Let us celebrate her beauty.
Let us celebrate her release from prison.

“I hope my death is peaceful,
And I hope never to return.”
–Frida Kalho

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.)

The Importance of Treating Chronic Pain

Reading this post, I was reminded of the day in 1987 when my first neurosurgeon reviewed my CT scan with me. It showed a badly ruptured disc in my neck. He told me to forget about it and go back to work (120 hours a week, as an intern in a tough academic program).

“What are you whining about?” he sneered. “It’s only pain.”

Two days later I was in emergency surgery. He later told me he had never seen a disc so smashed. Postop, I was given steroids, but no pain meds. Gotta be tough, no whining!

This whole “just live with it” mentality used to be a common hazing technique in the culture of doctors-in-training. At one point in my second year of residency, I was living in a molded plastic body jacket because four of my lumbar discs had degenerated. I asked my program director if I could go part-time for a few months, just to have time to go to physical therapy.

Her answer?

“You’re either on the bus, or off the bus.”

What compassion. A true role model for young physicians.

Later that year, I was working in the ER and had to call the orthopedic service resident to see a kid with a fracture. The resident on call turned out to be a woman. Very rare in those days to see a woman orthopedic resident. Even more rare to see them finish their residencies, because they were usually hazed out.

This woman appeared in a long leg cast: from her groin to her toes. Had had a bad fall skiing, badly smashed up, lots of plates and screws.

Yet her other team members that night–the intern and senior resident–were happily running up and down the stairs in the hospital, expecting the woman to keep up with them. The elevator? That’s for weenies! You’re either on the bus, or off the bus, as Ken Kesey used to say. As she sat in the cramped cinderblock cell that served as our office, writing her note in the fracture kid’s chart, she propped her own broken leg on a chair. The toes were grotesquely swollen and purple. I shuddered to think of the pain she must have been in. I asked her if she was taking anything for it. She shrugged, her face a blank mask.

Someday, I thought, if she makes it through her program (she did), it could go either way: she could either become an extremely compassionate doctor, or an extreme hardass.

But this new wave of torturers is a different breed, I think. I don’t know what it’s really about, but I wish them all a dose of kidney stones. Chronic ones. No dilaudid. After all…it’s only pain! Get used to it. Get your lazy ass off the floor and stop that moaning. Get used to it! Go back to work!

EDS Info (Ehlers-Danlos Syndrome)

The Importance of Treating Chronic Pain — Pain News Network – Dec 2015 – By Emily Ulrich, Columnist

Jane Ballantyne, MD, and Mark Sullivan, MD, wrote that reducing pain intensity – pain relief – should not be the primary goal of doctors who treat pain patients.

They suggest that patients should learn to accept their pain and move on with their lives.

This statement is nothing short of infuriating to me and I imagine to anyone who has to live with chronic pain. Many of us have already heard a doctor say, “I don’t prescribe pain medicine. Pain won’t kill you.”  

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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.

Hey CDC, “I’m not who you think I am!”

This says it like it is.

EDS Info (Ehlers-Danlos Syndrome)

Hey CDC, “I’m not who you think I am!” – by Angelika

I’m offended by the CDC opioid prescribing guidelines, with their assumption that I’m stupid and lazy (if my pain is even real in the first place) and that my doctor is ignorant and negligent.

I’m insulted by the derogatory appraisal of patient behavior and appalled that the CDC has broadcast such a devastatingly negative stereotype of pain patients

Coming from the government’s “Center for Disease Control”, these guidelines stigmatize patients with the authority of the US government behind them.

Read the entire article at the National Pain Report.

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