Chronic Pain Lifestyle

Pain and Depression

   I've just returned home after more than two months at The Comprehensive Pain Program at Johns Hopkins Hospital The program is a holistic cutting-edge pain management program that centers around a simple idea: chronic pain is exacerbated by clinical depression.  The idea seems obvious.  Who wouldn't be depressed knowing that every moment to come would be tainted by pain, every one of them?  So it follows that alleviating this automatic depressing thought in patients will also mitigate that patient's pain. 

I was diagnosed with arachnoiditis three years ago and was told that the nerves in my spine from L-4 to S-1 were damaged beyond repair.  My pain was so high that I couldn't function.  I had struggled through a year of sharply decreasing hours at work finally admitting to my self and my partners that I had to go out on short-term disability.  I found myself suddenly at home with entire days of painful free time and nothing to do.  As the pain in my back and legs progressed, short-term disability became long-term disability and I was powerless to do anything about it.  I wore terminal victim-hood as a badge  I was forty-seven years old and began receiving Social Security benefits.  My kids get checks too.  I was no longer a provider.

I had loved work.  I had fallen into my career by chance, hired as a stockbroker in the first year of the stampeding bull market that stuffed more money into my pockets than I had ever dreamed possible.  By the Crash of '87 I had over 100 million dollars of client assets under my management.  Amazing good fortune drove my career and by the new Millennium I was an executive leading the effort of however many financial advisers I chose to hire. 

In that same stretch of time, I herniated a disk.  This was a disaster.  Most stockbrokers work very long hours in a highly competitive work environment and I feared that even a single sick day would have had disastrous financial consequences for my family. I fought through intense semi-annual bouts of back pain and sciatica, suffering at my desk.  I placed crazy demands on myself.  My expectations were wildly unrealistic; no matter how much money I made or what I'd achieved it wasn't good enough.  I saw myself as a high net worth failure with a bad back.  I was a panic stricken jerk all the way to the bank and my back hurt all of the time. 

Thus the seeds of depression were sown. In the year 2005, the year I was diagnosed with arachnoiditis from L4,5 to S1, an insidious irreversible spinal condition.  I was weakened by this diagnose of ruined nerves in my spine. I saw my life not as one of achievement through adversity, but as one of colossal failure. I had failed to recover from two spinal operations.  I had failed to perform up to my expectations both at work and at home.  I had failed to master pain.  I saw my future as a lifetime of struggle to mitigate minute over minute spikes of nauseating, excruciating neuropathic pain. I was depressed by the thought of no relief, not a day, an hour even a minute from driving pain.  Pain eclipsed everything as the quality of my life diminished.  My family was held hostage by my inability to cope with chronic pain. 

I now understand this digression in my mental state, but understanding and accepting are two very different things.  Cognition doesn't necessitate acceptance.  For example I may know that the onset of severe chronic pain causes depression in people, but can I deny that I am one of those people.  So the trifecta of pain, physical dissipation and denial hit hard and was manifest in me as rage and hurt.  These states were exacerbated by the anxiety  of projecting that each new day would be worse than the previous ones.  This is an obvious fallacy, the past dose not predict the future.

The answer to this cycle of morbid complexity is simple and it begins by accepting simple facts.  I feel pain today.  A shower feels good.  My mind is clear and I'm writing.  It was very cold and windy when I woke-up at six AM.  Now it is warmer and less windy.  All of life, even the most complex scenarios, can be rendered into simple statements of what is true. It is true that it is cold outside. It is true that my feet hurt when I walk this morning.  It is the case that I can walk.  And on and on.  I had concluded that this conception of true statements required specific future responsibilities. 

But It is not imperative from any set of simple truths that a particular action ought to be done.  I knew that an 'ought' doesn't follow from an 'is'.  However, at that time, I was unable to conceive through the fog of pain that this fallacious belief was destroying my life.  I saw my life as a succession of failing to meet obligations.  The horrible lesson I had learned, pain destroys happiness, caused me to remove myself from all joyous events.  I had to.  I'd have destroyed them.  This darkly prophetic view was self-fulfilling.  If I am the agent of destruction of happiness, then I must subtract myself from all of the good things in my life.  What is false, became true, real through my refusal to be in all familial and social occurrences.  A horrid self-loathing took hold.  I was depressed but wouldn't admit it.  This sharply increased the physical pain that was my constant companion.

Strange ly, I knew all of this before I was a patient at Johns Hopkins but I didn't accept that this was true in my life.  My cognition of a problem is not the same as my accepting that a problem is mine.  If I want to alleviate the pain of my ruined nerves, I have to accept my condition every day without wallowing in self-pity.  I no longer have to endure the pain of disassociation from my physical state. 

There is no trophy for me if I endure hellish pain for the sake of running errands.  Today I look at the facts, a winter storm is pounding NY, ice is thick on the ground, driving is treacherous and lunatics are speeding around town in happy idiocy.  They may discover that four wheel drive is no help when trying to stop on ice.  Today they'll find-out without me because I've decided to stay home. I'll give myself a break, and that's okay.  Life as I know it will not cease if wait a day and go to Department of Motor Vehicles.  My pain is bad today, I won't make it worse.

I haven't subtracted myself from the push and pull of life. I cope with the daily pull to do more by just saying no. But it's not enough for me to simply examine and understand what is and isn't important.  I decide what to do.  I set small attainable goals for myself, lots of them.  In the process of meeting my goals I experience the fullness of my life, both pain and pleasure.  In the past few years I hadn't even noticed that I'd lost the ability to feel pleasure. I felt only pain.  This very day is a joy. I still have pain, but I'm living my life away from daily narcotic induced catatonia. The kids will be home soon and I can't wait.  I used to be in bed when they came home from school.

Debilitating illness comes from a sense that everything in my life is tainted by neuropathy.  I cannot afford that sense if I want to experience the fullness of life again.  I've also learned that the usual pharmacological tools to remove pain also remove pleasure.

So I'm home from the hospital and I feel much better.  I'm no longer a catastrophe looking for victims.  It was an excruciatingly painful program.  There were many days that I thought I would drop unmoving onto the floor.  Many fellow patients, some of whom waited over a year before they were admitted, simply quit.  I feel badly for them.  They quit before the miracle.  By the Grace of God, I made it.  And I feel much better.   

No Good Meds II

I'm home after a two and a half month sentence at the Comprehensive Pain Program at Johns Hopkins Hospital in Baltimore MD.  I call my visit to Hopkins a sentence because my pain (sounds like my soul?) so completely racked the body that the mind became unbalanced and I had no choice but to surrender myself for interment to save my family from the demon of me.  Souls and demons?  You betcha and an Irish Catholic priest patiently wait to hear ardent confessions of sin.  And God is good, I completed that hellish program, was released, and after hair-raising dash for a train arrived home to cheering.

The great minds at Hopkins hold an idea that traditional pain med's fail to adequately relieve pain over time.They say that opiods, the class of pharmaceuticals commonly refereed to as narcotics, are ineffective because these drugs are rapidly assimilated in humans; bodies become tolerant to their affect.  And while they continue to erase brain cells, these drugs become antagonistic to neuropathy. They become agents of pain after their effectiveness is done, so sufferers of chronic nerve pain experience a daily "withdrawal" from narcotics.  So we demand ever increasing doses.  The stigmatization of chronic pain patients is complete.  We are all hopeless drug fiends insisting to our doctors that we need more relief.  Doctors become afraid to prescribe doses that would kill an elephant.  So the pain sufferer is in a horrible predicament:  if I'm tolerant to high doses of narcotics and my current high dose causes incrementally higher pain I must ultimately be dosed to death.  A scorpion in the shoe. What a life.

What to do?  Am I condemned to a life of unrelenting nerve splitting pain?  My brain hurts.

Well, at Hopkins I was admitted to a hospital bed for three weeks.  On admittance my daily dose was 60 mg. of methadone, up to 1600 mcg. of Fentanyl and a boatload of Kepra.  With all this, I still felt debilitating pain.  I was primed for change by the disastrous catalyst of my home life; I was a somnolent wrecking ball, a catastrophe seeking victims.  And I found them in my family.  My wife and children were engulfed in my constant stuporous pain spikes.  Something had to be done, and pronto.

So there I was...(?).  More follows!!!!

My spleen is vented for now. I'll continue my saga in the next few days.  At this pace, I won't finish in a month.

Next:  The medieval adjust of med's, No Good Meds III.

 

No Good Meds

     Its hard to stop taking a prescribes pain medication, even harder if it is effective.  I won't say that my narcotic cocktail of methadone and fenanyl failed me.  Those drugs flat out worked.  The problem was that my system adapted to their presence quickly; my body was so efficient that within a month or two, the dosage lost effectiveness.  This became a cycle: drugs to tolerance to more drugs to tolerance...and on and on.  The cycle accelerated.  After a couple of years of intractable pain I was taking 60 mg. of Methadone, and 1000 mcg. of Fentanyl ( 5 x 200 mcg. sub lingual lollipops ). 

      This worked.  The obvious drawback: at some point a maximum dose is reached and the body, as it had always done, would adapt to that highest dosage.  This is a description of a point of no return.  What would you do at that point?  What's left when you max-out, reach a spot from which your meds can no longer be raised without killing you, and pain is fighting through doses that would kill a horse?  What follows that?

      It is clear to me, that I had to break the downward spiral of ever increase doses and "reset, reboot" my body.  I also experienced a comfortable numbness.  I felt pain, but didn't mind it; I also felt pleasure and didn't mind that either.  That's bad.  I had become unmoored, drifting by everything, seeing it all but not experiencing anything.  I became a spectator at the biggest event of all, my life.

     So I went to the most respected pain clinic in the country at Johns Hopkins Hospital in Baltimore where I've stayed for two months.  I'm home now, but just for Thanksgiving on a therapeutic leave of absence.  It kills me but I have to return to Maryland, to finish-up the program, for perhaps 3 more weeks.  I entered the hospital on October first.  It was 89 degrees in Baltimore.  Fifty-two days later, I'm still a patient.  The temperature outside is 27 degrees.

    Whats the forecast?  Easy.  Home for good within three weeks in time for a white Christmas.  God bless us all with sight to see his bountiful world.  Colin

Observarions from the Pain Clinic

         Where to begin? 

        My pain med's are nearly gone from my body.  Crumbs remain as if plankton within a current of blood.  These crumbs are now antagonistic within my body, cracking into smaller crumbs releasing trace amounts of insufficient respite from hellish pain.  The nerves in my spine are wrecked.  I often think of the comfort I'd found in much larger crumbs of this stuff.  The respite from pain, flawed as it was, is gone; comfort is gone, pain resides.  Yet my mind is clear.  I won't fall asleep in conversations any more.  Next week, the last remaining crumbs of methadone will have completely dissipated.  What then? Good bye...I'll miss you and don't forget to write.

       You already know pain; there is no reason for me to find words to describe it.  Words are limiting and pain is limitless.  I'm amidst the relative ease from narcotic pills, sub lingual lollipops and a foul greasy demon who will not be exorcised.  How many steps will I take if every step lands on hissing skillet?  Can you concieve of a life with permanently damaged nerves?

       How about this?  "My films" are now so numerous that they are rendered digitally on to DVD's.  There are so many pictures of my guts that they cannot be carried.  The bundle of films became too big, too heavy. These precise images of my body show the medicos that damage is so complete that my hissing nerves will never quiet.  The nerves, from L-4 to S-1, are guilty, shot, dead, buried.  No Easter for them.

       I'm home for Thanksgiving.  I'm on a "theraputic leave" but must return to the Hospital of Sharpest Medical Minds on Monday...back into the hospital until early December. I've been away for 52(!!!) days.  Fifty-two days is fifty too many and I'm still not finished.  What more will be done to me over the coming weeks?

        I am done typing.  I will not allow despair to disable me.  I still have hope that over time I will adapt to this radical change in my life. I cannot sit at my keyboard any longer.  It's early in the morning and my wife and children will roll from bed soon.  I won't miss a minute with them.  I hate the thought of leaving them again. 

        God bless us all this Thanksgiving day.  I hope that your holiday is what you need now.  Mine will be.  Colin