the author updates

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.”

bundling posts about pain
phooey on populating my blog with malady

chronic is a dirty word
first lamented 2/4/16
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

pain is strange
typed on March 11, 2016 
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 might bump into more pleasant pathway for signals, (neuroplasticity in so many forms).

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.