Chronic Pain Lifestyle

Observations from the Pain Clinic...

     Greetings all!

     It is a welcome distraction, which is an important component to pain management, to finally reach out to you.  I've been almost four weeks out of touch, and many of you who have wished kind thoughts for me may wonder what this clinic is about.  I'll post many observations and thoughts that I've been saving in a notebook.  I hope these will be helpful.

     Imagine this:  A life of relentless pain, without narcotics.  A life of pain over which you have control.  Chronic pain and a gentle return to a life of significantly better because it will be a new life, one re engineered by you.  A life of reduced pain, livable pain replete with the ordinary ups and downs of life but also a life in which you have new and better tools to deal with downs and celebrate the gifts.

     Let me tell you what brought me to this wonderful place.  Like many of you, many different traditional pain drugs really didn't work over time.  Oxycontin worked for a while.  Dilaudid made me sick.  Percocet didn't even dent my pain.  A last hope neurotransmitter implanted in my hip, only chipped at the sharp corners of my pain.  The neurotransmitter plus 60 mg. of methadone and 1600 micrograms of fentanyl also left me desperately wanting.  NOTHING WORKED TO SIGNIFICANTLY DULL MY PAIN; my life was a mess.

     I had temporary, small victories; occasional weeks of lower than usual pain, but it always came roaring back.

     My ray of hope began with a visit to an out of town MD.  This man told me I was deeply depressed (I didn't know).  He then said after making progress on bringing me out of depression, that I had to accept a life without narcotics.  His belief is that narcotics, used to treat long term pain, don't work.  These opioid/opiate drugs become antagonistic and that instead of relieving pain actually cause an inevitable cycle of increasing dosage and daily withdrawal thus causing significant daily pain. 

     In short, the narcotics we use cause addition high grade pain to long term users, chronic pain sufferers.  Oh, we're also highly dependent, so our bodies scream-out for more.  We're dependent. 

     The solution is simple.  Wean off of your current narcotic pain drugs while substituting other non-narcotic medicines that work to heal depression and kill pain.

     He then cautioned me to carefully consider whether I was content to continue along my current path ( waking at nine, napping from 2 PM) because the clinic was extremely hard to complete.  Those who did complete the clinic (2 mths.) still had chronic pain but had mastered control over their pain to the extent that most were nearly as functional as they had been before the onset of chronic pain.

     These people had learned many techniques, relied on non-addicting medications, and marched off into their "new" lives.

     A last quick thought:  The clinic accepts 8 patients at a time, most of whom have chronic pain from different syndromes, accidents, and diseases.  All for now, more to come.  God bless us all, Colin

A Train Wreck from Here to There

       String me up for a liar if I ever say that my faith, my optimism, my gratitude don't waver.  I pray that these qualities never die, but there are certainly times when I look in the mirror and hate the image I see staring at me.

    Today, I've a packed bag, a book, and a ticket that grants me passage from here to the next specialist.  I'll be on AMTRAK soon, will meet my wife at the Penn Station the debark in Baltimore (Ballmer, as they pronounce it) not to see the Orioles, but to be examined at Johns-Hopkins, tomorrow.

     I should feel nothing but gratitude.  My love, my wife is a doctor and that frequently gets me access to the more renowned specialists in the field of Pain Management.  Who among us wouldn't kill for this gift? ...Me.

     God in Heaven, forgive me not only of this sin, but the other, a fiction.  My kids are Mutts among God's children.  I'll tell you about them; I've got four.  Their lineage is unique.  From their mother's side, their blood runs rich with courage and fortitude.  My wife's parents, my wife's parents are European Jews who survived WWII.  You know what this means; my mother in law, as a young girl survived the concentration camps.  The rest of her siblings and mother didn't.  They were murdered. 

     My father in law was on a transit to the camps, but jumped with several other men, all of whom were shot except my father in law who made good his escape.  He doesn't talk much about his experiences beyond that mad dash.  I believe he became a partisan, but I'm not sure and I've never asked him.  He was recaptured, and survived the end of the War in a work camp.

     Bless me for sharing what I shouldn't, but see my kids for what they are.  My kids are Irish Jews.  Of my side see the Boston Irish and Scotts blood.  I had a comic book impression of myself, that I was the last of a hard breed, the one of my siblings most like my mother and father.  God, with immense gratitude I'll tell you now, that my kid's blood runs dark through their veins.  They are the product of improbability.

     My wife and I were not supposed to marry, but then, we are who we are and it couldn't have been any other way.  My wife is the daughter of survivors, so I'm the only Irish Catholic I know who lives in a Kosher house.

     In this context I endure my aches and pains.  I can't be effectively treated by medical doctors because I won't admit to my pain, which is spit in a bucket compared to the pain that has already been endured around me.

     As you can probably imagine, there is a lot more to this story; I haven't told you anything of my parent's trials, but trust me on this:  there are 2 important Boston Celt expressions.  One is, "suffer in silence", as my kids and wife do with me.  Know that the suffering that occurred on my side was a lot worse than chronic back pain.  No, their pain will take them to their graves, maybe beyond.   Kathy today sent me a card.  It says. "When I count my blessings, I count you twice."  Good thought for today.  I'll count my entire extended family, you, my friends who quietly read what I write, and everybody God has ever placed in my path (some of whom I must still beg forgiveness).

    Too much purple glop, here.  I'll end with gratitude.  God bless us all, Colin

Ps.  The other Boston Irish expression, "Life's hard. But it's harder when you're stupid."  Get it?

ICE: In Case of Emergency: Store in your cell phone

    Reader Deborah forwarded this along to me; one of those "Why didn't I think of that?"  Please read on...

Sounds like a good idea to me.

ICE Campaign - "In Case of Emergency"

     We all carry our mobile phones with names and numbers stored in its memory but nobody, other than ourselves, knows which of these numbers belong to our closest family or friends.

     If we were to be involved in an accident or were taken ill, the people attending us would have our mobile phone but wouldn't know who to call.  Yes, there are hundreds of numbers stored but which one is the contact person in case of an emergency?

     Hence this, "ICE" (In Case of Emergency) Campaign.

     The concept of "ICE" is catching on quickly. It is a method of contact during emergency situations. As cell phones are carried by the majority of the population, all you need to do is store the number of a contact person or persons who should be contacted during emergency under the name "ICE" ( In Case Of Emergency).
     The idea was thought up by a paramedic who found that when he went to the scenes of accidents, there were always mobile phones with patients, but they didn't know which number to call. He therefore thought that it would be a good idea if there was a nationally recognized name for this purpose. In an emergency situation, Emergency Service personnel and hospital Staff would be able to quickly contact the right person by simply dialing the number you have stored as "ICE."

     For more than one contact name simply enter ICE1, ICE2 and ICE3, etc. A great idea that will make a difference! Let's spread the concept of ICE by storing an ICE number in our mobile phones today!

    Please forward this. It won't take too many "forwards" before everybody will know about it.  This really could save your life, or put a loved one's mind at rest. ICE will speak for you when you are not able to.

     Thanks so much, Deb.  I'd really love to know who thought this one up; to any blogger out there, please use this message.  With many thanks, God bless us all, Colin 

A Site to Check-Out, Back Pain Relief

     There is no shortage of good blogs and sites.  I've found another that I strongly recommend, http://backpain-relief.relatedinfo4u.com/ .

     As the site says, "Back pain usually starts with signals or indicators. For
instance, if your back hurt at one time and stopped, and later it started
it again."  We've all been there, but for those of you who wonder if your back is flashing you serious warning signs, please hit this link.

     For the rest of us, knowledge is power.  The more we learn, the better equipped we are to work with our health care providers.  Do yourself a favor :  http://backpain-relief.relatedinfo4u.com/ .  God bless us all, Colin

My Medtronics Neuro-Stimulator...IT WORKS!!!

     This device is implanted just to the right of my hip above my buttock; it's about the size of a bar of soap and is wired to two contacts that "shoot" an electrical impulse up my spine to my brain.  I control the strength and frequency of the stimulation with a hand-held device.  It is battery powered and runs 24/7.
     The power source near my hip must be recharged every couple of years, but does not require surgery for recharging.  It is a passive recharging proceedure performed by my surgeon at the hospital, but doesn't require any invassive action.
     The hand-held controller is powered by a 9 volt battery that I replace monthly.  This controller is extremely important.  Although I never shut the device off, I can if I want to.  Since the entire thing is implanted under my skin, I don't have to shut it down when I shower, or if I were to swim.
     This stimulator is made by Medtronics it is surgically implanted after a week-long test to determine if it is helpful. 
     Changing positions, for example layinf down, presses the contacts (also surgically implanted) closer to the nerves in my spine.  This intensifies the stimulation so I turn down the strength of the electric pulses; I can changed the time between pulses from a constant stimulation to about one pulse every quarter-second.  As I said, I cant also change the strength of the electric impulse. 
     I don't adjust it very often; usually only when I sleep, when I turn down the strength.
     The way I understand it, this device changes the way my brain interprets pain.  The sensation of the stimulator is pleasant; it feels a bit like a tens unit only much stronger and more accuratedly targetted at my pain, which because of my condition, Adhesive Arachnoiditis, is severe. 
     I hate swapping pain stories, but after 20 years of untreated disk herniation I was "forced" to the table, suffered two failed spinal surgeries and became completely disabled at the tender age of 47.
     I still take a fistfull of daily meds, some narcotic, but without this neurostimulator, I was a complete basket case.  I'm a former athlete and am well used to funtioning with pain.  The back pain however, brought me to my knees (litterally).  About 1/3 of my pain is gone because of this device.
     In case you are wondering, it's not snake oil.  Medtronics is an enormous, New York Stock Exchange traded company, symbol,  MDT.
     Mine was implanted in NYC by a surgeon from The Hospital of Special Surgery.
     This is the first time I've written about this on the web site.  For another treatment read Wanda's 6 part article on her experiences with an interthecal pump.   

Tagged for a MeMe by Jim Walton

     Jim Walton, friend, adviser and a man so driven by success that he can't see it in himself, writes a hammering, not one step back blog called, Black in Business, http://www.blackinbusiness.org/2007/03/ tagged me for a MeMe a few months back.  I didn't know what the hell it was.  It's part personal manifesto and part rationale that answers the question, "why do you blog?"  If you run across a MeMe in a blog, read it!  It's not only an honor to be asked to write one by Jim, but you'll find each one fascinating.  Oh, you can tell the bullshit meme's from the honest ones in a nanosecond.  Here's mine: Eight unapologetic points about my blog, why I write it, and what I want.

1. I'm contrary and contradictory.  I love my friends, but I'm not a good friend. I'm always late replying to emails and I never agree. If you've got an opinion, I've got one, too.  I disagree!  I hate the Politically Correct World in which I live, almost as much as the Correct Counter Culture.  Both are so neat and clean.  Have you wet the bed? Yes?  I'm with you.  Does every other word out of your mouth sound like "gabba", because you feel so insecure and neurotic, failed and busted, ugly and inadequate?  C'mon over, lets watch the game.  Is that shit on your pants? Yeah, me too.  It's okay.  He didn't make anyone else one bit better than us; ever hear "...created in His image..."  That's right, every last one of us.
2. Don't tell me that my second hand smoke will kill you.  If I want to kill myself with smokes, I will.  That famous EPA study back in '93, the one that caused this moronic uproar in the first place, requiring that cities become smoke free...Well Einstein, read the cover.  In bold, half way down it says, "...there is NO scientific proof (none) that suggests that prolonged exposure to secondary smoke causes lung cancer, or heart disease...".  Do you know of even one bartender, even one, who's dead from lung disease from those days when we all smoked like chimneys.
3. I'm really mad that my career was taken away from me by my post-operative spinal condition.
4. I love my wife, even though we sometimes fight.  I love my kids, even though they often ignore me.  I try to love you, too, even though I don't know you.
5. This blog indulges my hope that someone, somewhere who reads it, might have a pain free moment today.
6. I hate that Hillary Clinton thought the American public was so stupid that we actually believed that she turned a grand into $100,000 by "...reading The Wall St. Journal..."  I loved her when on 60 minutes she said of her wandering husband "...that's between us.  If you don't like it, don't vote for him."
7. I'm embarrassed that I'm a sentimental fool.  I go to church.  God gave me 3 chances; after the first two I'd deliberately hurt a lot of people, was a snot nosed egomaniac, a hell of a good athlete through college, but despite His favor, selfishly destroyed his work.  I believe He's forgiven me.  It brings me peace to pray for others.
8. This blog is not mine.  I wrote only about myself.  The truth is that my friends, Anne and Wanda, have written beautifully and prolifically on our blog, which I hope continues to grow. 

   I tag my co-founder, co-writer and all around great pal, Anne; http://jackbauerdeclassified.typepad.com/chronic_pain_lifestyle/

  I tag Dorothy, whose photo's speak their own story whose wisdom and encouragement are a constant source of inspiration: www.Dorothygantenbein.com ;

  Lastly, the first, and second bloggers I spoke with who were a great source of help and I'd never have got started without them, the Chronic Babe; http://www.chronicbabe.com/, and

  the fabulously, funny and irreverent:  Nicky at Nicky's Nook, http://puppybraille.livejournal.com

A Disney World Crip Trip!

       One of my kids, a cheerleader, is on a team that qualified for the US Championship, held at Disney in Orlando Fl.  Last year, she qualified as well, but I just wasn't up for the trip.  That's not right; I was afraid to try the trip.  This year I went.

     The flight is a bit more than 2 hours, and despite the orange threat level, both Jet Blue and Delta make entering and exiting the jet as easy as possible.  Loaded up on Actiq, I, my wife and 3 more of my kids left the cold of the North behind us and spent 4 days at the Dolphin Hotel (centrally located; convenient to Epcot, MGM the Boardwalk and Downtown Disney but mind-blowingly inconvenient to the Magic Kingdom).

     I've decided that I've really got to make more of an effort at least try to participate in some of these important family events.  What's the downside?  Laying in bed for four days, and a tough flight home?

     YES!  Damn right!  That's the downside!  Five grand down the chute and laying in a bed in Orlando Florida followed by a brutal flight home.  Then another week recovering from this "vacation".

     But to be fair, I brought it all on myself.  I was on the upswing from a bad fall, and my pain meds and stimulator had me fairly well balanced, so as I said, it was worth a shot.

     On our first day, I quickly bounced back from the agonies of the flight,  The next morning, my feet and legs hurt badly until the methadone kicked in.  I carried 2 Actiq's, and we hit Epcot.  I walked slowly with my cane accompanied by one of my kids and met up with my fam a little later.  I was having a great time.  I couldn't ride any rides, but my wife and kids were having a blast.  It was a fun, fun day.

     But, I'd pushed it.  4 hours (gasp!).

     That 4 hours, although I didn't know it at the time with my stimulator and Actiq, which is Fentenyl 200 micro-gram lollipops, masked the pain.  Masked it really well.

     By the 3rd day, I was at 2 hours of walking and sitting, MAX!  Sleep was a near impossibility.  I was now maxing-out my daily high-end of Actiq.

      I'd decided to sell the house and move to Disney World to avoid the car to the airport, flight to New York, and car from LaGuardia Airport in New York to home.  Not a bad idea.  Real estate price differences would make me a pile of dough.  The only problem was that I'd have to live in Orlando.  Not that that's so bad, but I'm a New Englander a dearly love my seasons, particularly Winter.

     Well, we all made it home, safe and sound.  And I'm proud of my daughter, love my wife, worship my kids, and we're all back to the daily grind.  I'm also proud of myself.  Yeah, yeah I faced my fear.

     Each night we were in Florida, I went out onto the terrace, closed the door and said a small prayer.  I thanked Him for the strength to learn the physical cost of a trip to Florida with my family.  I thanked Him for His beautiful world.  I felt loved and rewarded.  It hurt, but He took me there and He took me home.  It's like the love I experience everyday in my family; sometimes it hurts, but the love is forever.  The pain goes away.

     Would I try again to take a trip with my family?  Yes, without reservation.  He showed me that He helps, if I try. Colin

      

Words Won't do Much for These People:

     Did You happen to read this comment:

          I AM TRYING TO FIND MEDICAL COVERAGE THAT IS AFFAORDABLE. I CANNOT PAY THE COBRA FEE. I AM 61, A
NURSE, 31YEARS. WORKED FULL TIME THROUGH 9/06. I CAN'T FIND HELP. I FALL THROUGH THE CRACKS. I AM TOO OLD, TOO YOUNG, ETC. ETC.

     Or how about this one:

          I can relate to all these stories. My Daughter says that I've always been so independent that maybe this is Gods' way of teaching me to rely on others. I live on 940.00 a month disability and get 12.00 in food stamps. I have no insurance, so all my DR's visit's have to be cash. I have always worked, raised three kids without help from the Government. I take five medications a day ad those to are cash. I feel as though the Government is much more interested in helping people that have never worked and never will than those of us that have. God Bless you all.

     There isn't a word I can write that will make a damn bit of difference to these people, and the many others like them. 

     Action, not words!  First step: drop a line. God bless, Colin

The Power of Collaboration

    Readers, I've written several recent articles about coming together as a group to bring about changes that we as individuals cannot.  It's not magic.  We as a group on misaligned individuals, stakeholders as it were, share common problems; what we fail to do is work together to solve those problems.  This has got to stop.

     We stakeholders, disabled Americans, are a diverse group of people, although we do have common problems, squander our greatest strength: diversity.

     We are unique, each of us with a story, a personal portfolio of individual experiences, knowledge, and perspectives.  In The Collaborative Leadership Field book, by David Crislip, the author states, "Communities (disabled Americans are a community)...strengthen their capacity to solve problems and implement solutions when those involved and affected participate in decision making...People with different capacities to solve problems and innovate make adaptive work possible.  Leadership comes from many segments of society rather than from a privileged few."

     I strongly believe it is fatally naive to assume that the privileged few will throw the door open wide to the halls of power in the interest of a more effective and dynamic form of Democracy.

     This however clearly outlines the first step for us, American's for the Right to Recovery; we must first come together.  It is incumbent upon us to "get our own house in order."  If we don't believe strongly enough that disabled Americans require the protections of law, then we don't deserve entre into those very halls of power.

     Passivity and diffidence in the face of injustice get what they deserve: NOTHING.

     If you feel otherwise, that disabled American's right to privacy is regularly trampled; that the risk of trying to reenter the workforce, except under the conditions of an insurance carrier, is a violation of your right to work and is discriminatory against you because you became disabled; and, that unless you are wealthy, you are forced into a system that would hold you hostage to the iniquities of a large corporation driven more by shareholder concerns than the disabled, who suffer real daily pain, THEN YOU MUST< AS A MATTER OF CONSCIENCE GET INVOLVED.

      The start is simple.  Either shoot-off an email to Chronic Pain Lifestyle, or leave a comment.  At this moment, the ball is in our court.

God bless, Colin

The Guy Does His Favorite 10 Things

     Summer hit the Northeast early and hard this year.  Time to fess-up.  Here are 10 Summer things that guys, men's men let fly in the heat of Summer.

1. My aftershave lotion is sweat. Baby, you know this is true. When the thermometer hits 95 degrees and the humidity is 100 percent, nurture's own aphrodisiac permeates the home like a boiling corned beef. Save that dripping wet tee shirt I've warn to mow the lawn for "love soup".
2. I lost 10 pounds mowing that lawn, and every female dog in the neighborhood is howling.  I wish I'd warn boxers under my cut offs, torn at the knee.  Can't keep my pants up when I bend to rip start that mower. HEY! No peeking!
3. Remember those nice work boots you bought me for Christmas?  I admit, I've been wearing them without socks, and no, they won't draw flies.  Hell honey. they'll draw bears!
4. Where's my Peterbilt  hat?
5. Honey, send the kids to the mall, I gotta use the facilities.  If I yell, bring that plunger.
6. I know it's late, but I'm going to the barber.  Ray's my barber, and before that it was big Ray.  I will hear the newest filthy joke, read Guns and Ammo, get a crew, high and tight, and enjoy the aroma of decades of Bay Rhum, Luck Tiger, butch wax, Wild-root, bubble gum and if I'm really in the mood, get a shave.
7. I'll see If that sump pump is seized-up.
8. Fill the...no,no,no...get $20 regular and let Al clean the window.  If it's the kid, I'll flip him a buck.
9. Nap time
10. That night I'll peek at my wife getting out of the shower.  She's still the best damn thing I've ever seen.  We're not 18 anymore, but I'd never trade.

     Dear God, I know all this stuff isn't even mine.  It's yours.  Maybe I'll make 50 more years until I'm dust again and it will be someone else's turn.  I'll reach up to you and say thanks. I wonder most days why you chose to give me so much