Chronic Pain Lifestyle

Peace On Earth, Goodwill to All

We wish everyone a joyous holiday. May the Spirit of Christmas come upon you all the days of the new year.

This beautiful tree is courtesy of Dorothy Gantenbein, www.dorothyphoto,com.  Dorothy is a true friend whose wonderful art decorates this humble page. Please follow this link to Dorothy's site and see the world through her discriminating eye.

Please enjoy this festive musical devotion courtesy of fellow blogger, El Gigante Verdoso, Trans-Siberian Orchestra - Christmas Canon Rock

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.

 

A Winter Holiday

A couple of years ago I was digging around in our storage and came upon my Gramma Al’s fur coat.  As I looked at the coat, I saw a piece of kleenex, tucked into the cuff on the left arm. 

I unfolded the tissue and saw my Gramma’s lipstick print, just as she had put it there some thirty or so years ago.  And then I held the tissue to my face and breathed in deeply, and I was reminded of her perfume.  In an instant all the sights and sounds of holidays past, came rushing in.

It was a few days before Christmas break in 1968.  I was 8 years old and Clare was 6.  The snow was piling up outside, like good intentions on the first day of school.  The sidewalks were shoveled into trenches to walk in on our way to school.

Clare and I were in boots, snow pants and coats and mittens and hats and scarves.  We were wearing a lot of clothes to walk the six blocks between our house and Beaser Elementary School. 

We dragged our school bags through the snow.  Bags which were full of homework , tablets, pencils, crayons and library books and school shoes.  When we finally arrived at the school, we began to peel off the layers of clothes and deal with the inevitable hat hair.  We both had long hair and we were either battling hat hair or snarls.

It was the last day of school before the Christmas break was met with the same level of anticipation as the last day of school.  No teacher was fool enough to try and teach us anything, so we spent the day singing Christmas carols, and putting on the school program and finishing up our cards and homemade presents for our parents.

As the day progressed the anxious little children became squirmy little wide-eyed children who jumped around like we had ants in our pants.  It was so hard to be quiet and behave when there was a tree at home with presents underneath it and your name on some of the tags.  Who knows what kind of treasures were in those boxes?  No matter what it was, we wanted and loved it and treasured it.  I have a doll I got one year that was so pretty, I never really played with her.  She’s still with me and she still has a tube of toothpaste that came with her.  And I still have her shoes.  I’m a saver, I like to keep everything.  Just ask my husband.

As the day finally drew to a close, we carefully folded the paper chains made by our little hands with loads of paste and construction paper and put them in our school bags for the trip home.  We also tucked in the homemade cards and presents which we made in art classes the week before. 

Clare and I hurried home as fast as we could.  There were only a few stops along the way to climb snow banks and make angels in the snow.  As soon as we got home we unfolded our paper chains and put them on the tree.  Then we turned over our homemade gifts and cards to our parents who were sitting in the kitchen drinking coffee and trying to relax in the chaos of the holidays.

Clare and I dove under the dining room table to lay on our stomachs and look at the tree.  It kind of freaked us out sometimes when the tree was looking back!  Our cat climbed up the middle of the tree and sat there.  When you walked by, her big yellow eyes would follow you.

If you didn’t know we had a cat it was a little freaky.

By the time Christmas Eve finally arrived we had worked ourselves into the kind of frenzy that can only now be achieved by downing 4 double shot espressos and topping them off with a half dozen red bulls.

We were like live wires, the excitement was palpable.  No amount of coaxing could get us to settle down.

My Mom always let us open one present on Christmas Eve.  I think she had to let us.  We were so excited, we were probably driving her crazy with our begging.  I think this is the only time begging worked out for us.  We must have worn her down.  But I still do that tradition here, I think it’s kind of fun.  But then there was another problem, which one of the mystery boxes would we open?????

Normally we would open our presents from Aunt Marilyn and Uncle Glen.  They lived in New Mexico with their 3 kids, my cousins Nancy, Erica and Peter.  They all looked like they walked straight off a sixties sitcom and I mean that in a good way.  All three kids had blonde hair and beautiful big bright white smiles.  I remember one year we got matching green plaid dresses.  Our cousins Nancy and Erica also got them.  Nancy wore her dress for her school pictures.  I always felt special in that dress, like some of the magic of their technicolor life rubbed off on me.  I felt very pretty in that dress.

So here it was, everything was done, the only thing left was to go to bed.
Christmas Eve is by far the most difficult night of all.  Sleep is the last thing you want to do.  Between our excited giggles we would look out the window and watch the snow fall and wonder aloud about which things were in which boxes.  We also used this time to sing at the top of our lungs.  We did this every night, not just during Christmas.  We mostly sang Beatles songs and Three Dog Night.  My poor parents.  Every time they told us to be quiet, we acted like we didn’t know what they were talking about.

When sleep finally came we slept very hard.  After the past few days of anticipation, our exhausted little minds were filled with dreams of dolls, bikes and teddy bears.

When morning finally arrived, it took us about 1 1/2 seconds to figure out which day it was.  Clare and I would run to the top of the stairs, link our arms and run down the stairs as fast as we possibly could.  We continued this tradition every year well into our twenties.  We would probably still do it but I live in a ranch house.

As we rounded the corner, we peeked into the dining room and there it was.  A bounty of presents appeared overnight!!  Santa had come and left more presents and mixed up our carefully arranged stacks.  What did these boxes hold!!!

It was so exciting, so many things under the tree.  It was almost too much to bear.  And then.....we waited.  Although we were never told to wait, we always waited to open our gifts until after Mom & Dad came down.

Sometimes we would run back upstairs to hurry them along.  Mostly we would just sit and wait.  A few times we made coffee, thinking the aroma would surely make them hurry up.  I was right, it did.  Probably because we didn’t know how to make coffee and it was boiling up and all over the stove.  But they never complained.  Mom and Dad sat with their mugs of really strong coffee and very tired smiles.  Very tired from staying up late to assemble whatever needed it and to move the presents from where they were hidden.

If you happen to be a little kid, you should know that Santa left the presents for us earlier in the night, so our Mom and Dad had to hide them until we went to bed.  Then Mom and Dad  put them under the tree.  You see Santa has a long way to go on Christmas Eve, so sometimes he stops up north in Wisconsin first.  Anyway, that’s my story and I’m sticking to it.

Soon we were up to our chins in flying paper and bows.  The chaos inside almost matched the snow blizzard going on outside.  We tore open the packages like they were on fire.  And what presents we got!!  There were the dolls, doll clothes and games.  There were clothes and mittens and books. One year we got bikes from Gramma Al and Grampa Jack.  I would give my right arm to have it back.  Mine was a 3-speed Schwinn, purple metal flake, banana seat and wheelie bar in back.  I loved it.  Clare’s bike was a single speed, marine blue Schwinn also with a banana seat and wheelie bar.  I think she also had a basket and bell.  I’m not sure, but I think she did.  If I wasn’t so lazy I would go and pull out the photo album and look, but it’s Sunday and I’m here alone with Dino.  I’m not getting up for anything except maybe the Milky Way Bar that’s waiting for me in the refrigerator.

Every year we got so much stuff.  One year we got a science project kit that had chemicals and a microscope.  Clare would play with that stuff forever.  She would take it into a closet and sit there by herself mixing stuff up.  She’s a pharmacist now, this was probably good training.

After we played with our new toys, Mom had to practically threaten us to go back upstairs and get dressed.  Christmas dinner would be served soon and our grandparents and Aunt Susie and Uncle Mac would be arriving soon.  We had to put on nice dresses and tights.

And in they came with a rush of cold air and warm hugs.  Gramma Al and Grampa Jack, Aunt Susie and Uncle Mac.  All of them happy to be in from the cold and ready to hug and kiss all four kids.  Mary the oldest, Mike the only boy and the one with the biggest blue eyes, me and Clare the only blonde.  As we greeted each of them, we all got marked by Gramma’s lipstick and surrounded by her loving mink covered arms.

And just like that, my memory is over and I’m standing here in my house in Harmony Grove, looking at my Gramma’s coat and inhaling her perfume as deeply as I could.  I’m not 8 years old anymore and my Gramma, Grampa, Uncle Mac and Dad are gone.  But in my memories, they are right here.

If I shut my eyes, I can almost see Dad mashing the potatoes and Mom putting her homemade rolls on the table, Grampa Jack slicing the roast and Gramma stirring the gravy.  It’s a nice memory and it makes me feel like I’m at home.  After all, they’re not really gone, my family is right here whenever I need them.  I can feel it.

Merry Christmas and Happy New Year

Thanks for listening,

Anne

I'm Up Again

Hi Friends,

It's been a long time since I've been able to sit at the computer or any place except in  my bed. In fact I still have to sit or lay in the above mentioned and it seems it might be a permanent condition. Since June 6, 2006 and this  past Monday I've had three surgeries on my back due to the pain pump I originally had implanted in 1989. I won't go into all the details now but I do want to let you know I am finally doing some better. The new pump had to be moved to a new site due to infection.  Pumps can cause serious problems as I've learned at a heavy cost.

But don't give up hope, yet. For further information on this subject look under the  "Pain Pumps & Me" articles I''ve posted previously.

Right now my goal is to get out of bed by myself and into my powerchair for an hour or so.

Love to all,

Wanda