Why do some people get pain meds and some people don't?

We shouldn't let sweeping bias against opiates control medical decision makers. 

Pain can rule your life making the daily tasks of life insurmountable. I don't normally tell stories of pain and seldom describe pain at it's worst. It's too ugly. People don't like ugly. It's better to protect others from the weight of it. And mercy is the last thing to want. I'm using a blog to report a reaction to pain that surprised me and to encourage common sense around the issue of pain meds.

A. By late afternoon yesterday I found myself sobbing in grief. A storm of cramps hit hard. I was on the floor shaking and twitching and helplessly moaning. Nowhere to run. 

B. By today I'd already forgotten about yesterday. I think that's extraordinary, and that's also why I'm writing this post. 

People living with pain are probably familiar with tricks our brain will use to protect us, can't be only me. They also must be experiencing new and interesting ways of coping. For example, pain yesterday put me in a sobbing puddle of squirming and pleading out loud for relief, I was stunned such massive red hot pain can be put into a human body, yet only a day later I'd already forgotten about this new benchmark.

I awoke, made coffee, checked the news and weather as if an average life. It was late the following day when I remembered my life's worst pain. How dare my brain forget something so terrible? Normal folks wouldn't forget the greatest pain of their life, greater than any pain they felt before. Their 'personal peak pain' would tattoo their memory. 

It seems my brain is learning to edit trauma, to erase it. I'm intrigued how easily I shoveled away such a terrible event. 

Neuroplasticity in so many forms. 

Pain attacks me. I'm an older fellow with no illness except severe and permanent pain without a known cause. My heart is healthy, blood flow is excellent; "Not a speck of cholesterol," the cardiologist reports; no tumors, not diabetic, weight is good. If I can walk and be active, I'm eager to do it. But peripheral neuropathy arrived in my life about three years ago.

Pain is always. Never goes away. It began as a feeling of cramp in the front of my right foot while helping a neighbor build a fence. I walked home limping ouch to ouch. The first doctor's advice was tonic water for the quinine. By the third or fourth appointment, pain was rising and falling as if a thousand nails were driven into the bones of both legs.

Life became grimacing. Only exhaustion let me sleep. I'd squirm in bed until I passed out. Pain would wake me in an hour or two... cycle, repeat. I stood to try to stretch it away or hung from the trim of a doorway to try to twist it away. Or push ups off a chair or walk barefoot on the cold 4AM driveway or try a hot epsom bath or try a cold epsom bath or re-read Advil bleeding and death rate warnings until too tired to stand up, return to bed, squirm in bed, pass out until pain wakes me. Rarely out of the house, I mean rarely, maybe two trips to the supermarket in a month, mailbox every second day, the next appointment might blow off another several weeks.

It's hard to comprehend how I endured it. After neurology tests confirmed nerve disease, the prescription changed to a real pain killer. Nine months of agony before some hyrodcodone. Nuts. I've never used oxy. Still don't understand the differences.

Damn Damn Damn Pain Pain Pain

I now have three implants to help deal with pain. A neurostimulator implant cuts away peaks of boiling hot pain and gives the chance to walk around a bit; drive for groceries, appointments. The second implant pumps pain meds directly onto the spinal cord. I can now walk through a supermarket without grimacing or leaning on the shelving through an attack. Less dope in my blood lets me feel more awake. Seemingly unrelated to a pain condition, the third device is a pacemaker to boost signals of misfiring nerves that have let my pulse drop, luckily in the ER, to as low as 19 beats per minute, a beat or two away from dead. I tease doctors and staff there's room for extra implants too. 

Pain is always. Never goes away. But it's half what it used to be. Pain management and pain implants have helped. I now sleep when I'm tired rather than when I pass out after too many hours merely enduring... cycle in and out... repeat day after day. Rather than a thousand nails hammered into my bones, for several months I'm somewhat mobile. Levels of pain range from a medium headache to wearing scalding knee socks and increasingly there's spaces in an hour when pain disappears. With less pain I can be busy, active, doing something, fixing something, cooking, reading, watching movies, fathoming the web, doing enough to ignore it; favors and fun.

When pain is too great, when more meds will either daze me or kill me, when the implants or calming or ignoring or stretching fail to defeat pain, sadly yesterday when I swear the attack was higher than the ten point chart, well, that's just outright nuts.

Pain is nuts and nobody knows what to do about that. Except, maybe, my own brain, (neuroplasticity in so many forms), but when will my brain or your brain become adept enough to forget pain while it occurs?

Never. And I wouldn't wish the experiments on you. 

feeling blue, that classic warm chesty type of blue, hit me like a boulder this morning, there was one particular trigger, there's always a trigger for this kind of blue... the billpay portal at the pain clinic kicked me off, called their tech services, they don't know why, looking into it, they'll call me back... it's the patient's obligation to make sure the bill is paid... and a'that

getting co-pay'd to death... no longer merely a nuisance fee... multiple weekly appointments... call-ins... sent to specialists... brand-name prescriptions... all the stuff to be grateful for... yes, overall, this is high-tech medicine, access to world-grade services, their practice overhead costs are enormous, practitioner obligations for licenses, liability, employees, multiple offices, their education, always their education... costs are enormous, so who the hell is this guy with the co-pay?

and around the country co-pay has become a political matter, co-pay piles up... we're not supposed to notice tiny burdens, we ask for a service and pay the co-pay, makes so much good sense... we all agree to the moral underpinning of co-pay... request a medical service, the doctor is 'co-payed', the world goes on... wo0t

what about when the doctor says "I need to see you Monday for this and Thursday for that" and the year grinds into another year and what about sending me to new doctors, "I need you to see Doctor This and go see Doctor That"?

chronic is a dirty word

in more ways than one 
chronic pain buggers our DNA

Your brain uses only milliseconds to make its choices. 
...the most important thing that matters in regulating our thoughts, feelings, and actions is their first 100-200 msec in the brain, which is when the levers and pulleys are actually doing their thing.
plural noun: milliseconds !
We proceed in bursts, bursts of less than 200 milliseconds. One decision proceeds to the next. Left foot here. See that smile? Hand in pocket. Yes, a smile. There it is. Wonderfully warm flutter in my heart. Oh, there it is. Left foot there. Oh no, that's not a smile. Right foot stops. 
These words fail to explain. They force us into a robotic ladder of mundane maneuvers. Life along an axis. Forty steps 'x', Fifty steps 'y'. We're not that. We must be more than a cyber-centipede of linked instructions.
And yet, we must admit our mind operates stunningly fast. We rarely sense more than a blur. As one thought follows another, are we tumbling and cascading along or can we learn to see ourselves operating in real time, in milliseconds? There's a terrific frontier!
Deric Bownds once more:
It might make the strident assertion that the most important thing that matters in regulating our thoughts, feelings, and actions is their first 100-200 msec in the brain, which is when the levers and pulleys are actually doing their thing. It would be a nuts and bolts approach to altering - or at least inhibiting - self limiting behaviors. It would suggest that a central trick is to avoid taking on on the ‘enormity of it all,’ and instead use a variety of techniques to get our awareness down to the normally invisible 100-200 msec time interval in which our actions are being programmed.

2 billion people don’t have access to safe clean water. 3 billion don’t have access to toilets. Bottom of the Pyramid market = $32 billion.

317 million on the job accidents = 2.3 million deaths per year. Road traffic injuries cause 3500 deaths every day.

25% of people live without electricity. Solid fuel air pollution causes 4 million deaths per year. BoP market = $317 billion (Electricity = $137 billion).

By 2050 we will need 3 earths. GHGs increased 50% since 1990. Natural assets are 26% of emerging economy wealth.

World needs to produce 50% more food to meet demand. 70% of the world's rural poor rely on agriculture for income. Food = half of BoP spending.

2.5 billion people live on less than $2/day. 4 billion are without basic goods & services. Wealthiest 5% earn the same as the poorest 80%.

870 million are undernourished. 1 billion people lack access to health care. 15 million die yearly from preventable infectious diseases.

124 million young people globally don't have access to education. Only 49% of children attend secondary school. BoP Market = $193 billion.

[Source: ASME Innovation Showcase, link: https://thisishardware.org]

On Fri, Jan 15, 2016 at 1:09 AM, Gary wrote:
"I hope that you are healthy and enjoying life."

Can't say I'm unhappy. My inner world is calm and often cheery. That's a sad irony though, because pain in my body often stops me in my tracks.

And lately a new twist appears. You can find me grimacing in the grocery aisle holding onto the shelving with both arms trying to stretch out massive cramps that suddenly attack my thighs and back. The pain is so damn hot. Muscles tighten up, clamped stiff, and so damn gripping painful. When do I say "off the scale"?

I put a bar across the bathroom doorway and rush to hang off it as soon as I feel a 'cramp session' arriving. Writhing in a doorway. Nuts, I say to myself. Hanging off a bar, twisting and stretching my legs and body parts as far as I can into the air or across the floor in a lame effort to stop the cramping. My back, abdomen, legs, feet are on fire. My face is twisted. Heavy cramping pain attacks me. Day to day is different, yet several times over 24 hours smothering pain can hit hard. No photo. Can't film it. Too ugly. Within three, four, five minutes, as if a switch somewhere in the vast snarl of cellular proteins, calm returns to these rabid muscles. My mind clears, no longer in a damn cauldron. Pain goes down. I can stand up.

I try to put away my utter confusion about the last 2-3 years. What kind of disease is this? I remind myself I have university ties. Half dozen known and renowned docs and neurologists well-versed in the sour academy of pain. Dozens of vials of blood show me healthy. Tests show I'm a healthy guy. Ultrasound and CT scans show me healthy. Not even a speck of cholesterol; "Not a speck." Pelvic, thoracic, neck and brain MRI; hours in that clackity-clack tube show I'm healthy. Doctors shrug their shoulders and say, (oh it's terrible to hear it), "There's nothing I can do. You're one of the tough ones."

I'm not anxious or compulsive or blue, although any amount of morphine seems to bugger decision making. I try to get out, to walk half a block, drive to a deli; can't sit through a movie, can't eat out in public. Pain cycles up and down and will hit so hard there's no chance of a movie or a meal. Almost all day every day I'm reclined, switching TV channels, cruising the Internet, or drifting off in morphine somnolence. Sold the Honda scooter. Put disability plates on my truck. I can hobble for an hour or so. Buy my own groceries. Pick up a pizza.

There's three implants in my body for pain. First, a neurostimulator tries to confuse pain signals picked up by my brain. Two, a pain pump dribbles a recipe of opioids directly onto my spinal cord. A third implant is a pacemaker so the dope won't slow my heart too much. (Worried about being unable to stay awake, I drove to the ER two months ago to find my heart beating less than 30 times per minute. They installed a pacemaker. "Three implants," I tell 'em in the waiting room, "and room for more!"

I'm hovering at the lonely ends of the Bell Curve. Hot chainmail wraps my feet and legs with pain. Drugs barely cut the peaks or spread out the boilings. Tortured and there's no cure. No other word for it. C'mon? Any suggestions? Pain is constant. It's generally 3-4-5 on the pain scale. Regularly jumps to 6-7-8 pain on the scale of pain. As if a bomb, 'curling-up' pain drops onto me unannounced 24 total-disability hours a day.

There's rain in California. The cows across the street are calm. The boxer dog at the gate waits for a treat. Refrigerator is cold. I'll always miss my wife. I'm sixty-seven this January and except for this nuts serious Peripheral Neuropathy, I bet I'm younger than many my age.

After it's all been said and done as they say, all in all as they say, I am enjoying life."

And boy oh boy, that's something good. It surprises me there's few articles or documentaries or blog posts or tweets about the bloody misery of mosquito clouds or black fly swarms or gnat attacks, i.e. Alaska, Canada. Worldwide, I shudder to imagine how people cope. I roped a metal bucket over my shoulder and lit a tiny smoldering fire of twigs, grabbing green branches to stoke the smoke billowing around me as I walked down the trail... what a sight to behold. So this gizmo must outright gotta be fun... fer darn sure.

[link: https://www.youtube.com/watch?v=HCOVzFaEpuk]

"In ancient Rome, the word persona had two meanings: a mask, and a full citizen. A person online, however, is de facto not a full citizen...." Computers track your habits and your friends. You must govern automated decisions about your job, loans, your health, shopping... Civil Rights Principles for the Era of Big Data Technological progress should bring greater safety, economic opportunity, and convenience to everyone. Plus the collection of new types of data is essential for documenting persistent inequality and discrimination. At the same time, as new technologies allow companies and government to gain greater insight into our lives, it is vitally important that these technologies be designed and used in ways that respect the values of equal opportunity and equal justice:

  1. Stop High-Tech Profiling. New surveillance tools and data gathering techniques that can assemble detailed information about any person or group create a heightened risk of profiling and discrimination. Clear limitations and robust audit mechanisms are necessary to make sure that if these tools are used it is in a responsible and equitable way.
  2. Ensure Fairness in Automated Decisions. Computerized decision-making in areas such as employment, health, education, and lending must be judged by its impact on real people, must operate fairly for all communities, and in particular must protect the interests of those that are disadvantaged or that have historically been the subject of discrimination. Systems that are blind to the preexisting disparities faced by such communities can easily reach decisions that reinforce existing inequities. Independent review and other remedies may be necessary to assure that a system works fairly.
  3. Preserve Constitutional Principles. Search warrants and other independent oversight of law enforcement are particularly important for communities of color and for religious and ethnic minorities, who often face disproportionate scrutiny. Government databases must not be allowed to undermine core legal protections, including those of privacy and freedom of association.
  4. Enhance Individual Control of Personal Information. Personal information that is known to a corporation — such as the moment-to-moment record of a person’s movements or communications — can easily be used by companies and the government against vulnerable populations, including women, the formerly incarcerated, immigrants, religious minorities, the LGBT community, and young people. Individuals should have meaningful, flexible control over how a corporation gathers data from them, and how it uses and shares that data. Non-public information should not be disclosed to the government without judicial process.
  5. Protect People from Inaccurate Data. Government and corporate databases must allow everyone — including the urban and rural poor, people with disabilities, seniors, and people who lack access to the Internet — to appropriately ensure the accuracy of personal information that is used to make important decisions about them. This requires disclosure of the underlying data, and the right to correct it when inaccurate.

Silicon Valley and Wall Street abuses: black-box-societyFrank Pasquale's Black Box Society takes a closer look at how your life is swept up and published. "Here’s one paradox I’m trying to resolve: even as economic change seems to accelerate, existing hierarchies of power and wealth seem ever more ossified, stable, secure. "I trace this problem to two, mutually reinforcing trends: the financialization of data, and the data-fication of finance." Current law fails to regulate data.

"summer fenceGoing too fast for myself I missed  more than I think I can remember  almost everything it seems sometimes and yet there are chances that come back that I did not notice when they stood where I could have reached out and touched them this morning the black shepherd dog still young looking up and saying Are you ready this time" – W. S. Merwin  


Happy the man, whose wish and care
A few paternal acres bound,
Content to breathe his native air,
In his own ground.

Whose herds with milk, whose fields with bread,
Whose flocks supply him with attire,
Whose trees in summer yield him shade,
In winter fire.

Blest, who can unconcernedly find
Hours, days, and years slide soft away,
In health of body, peace of mind,
Quiet by day,

Sound sleep by night; study and ease,
Together mixed; sweet recreation;
And innocence, which most does please,
With meditation.

Thus let me live, unseen, unknown;
Thus unlamented let me die;
Steal from the world, and not a stone
Tell where I lie.

– Alexander Pope, “Ode on Solitude”

"I sometimes think US politicians don’t know which way is up."

you've known this since you were a kid
looming change is your blood
struggling in a shit pile to fix it
and now you're tired
call it reverence if you must
it's real exhaustion
relief and more relief
powerful youth could fix it
wouldn't it be nice to do it over?

what happens isn't the whole story
you've been waiting more than a heart can bear
nonsense month after month after month
hooked into a parade of chains
breathing isn't what it used to be
you're stuck with that
stop and you cripple yourself