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

A Weekend Wish

While Colin is gone, he is sending a few things via his Blackberry.  I received this yesterday.  Colin forwarded this message he received from Kathy.  Thank you Kathy for this wonderful story.

Let’s make this a great weekend and reduce our pain as much as possible.  Try to focus on the good things in your life and smile.  Take a walk if you can, smell the fall leaves and the bonfires, there’s a cold nip in the air that could best be dealt with by a big mug of hot cocoa and a few marshmellows.

Have a great weekend.

Anne

I don't know who wrote this but we all have gifts and abilities and God hold us
up when we are low. I hope things are going well for you. Take care.
Breathe in Peace, kathy

"GOD LIVES UNDER THE BED 

I envy Kevin. My brother Kevin thinks God lives under his bed. At least that's
what I heard him say one night. 

He was praying out loud in his dark bedroom, and I stopped to listen, "Are you
there, God?" he said. "Where are you? Oh, I see. Under the bed..." 

I giggled softly and tiptoed off to my own room. Kevin's unique perspectives are
often a source of amusement. But that night something else lingered long after
the humor. I realized for the first time the very different world Kevin lives
in. 

He was born 30 years ago, mentally disabled as a result of difficulties during
labor. Apart from his size (he's 6-foot-2), there are few ways in which he is an
adult. 

He reason s and communicates with the capabilities of a 7-year-old, and he
always will. He will probably always believe that God lives under his bed, that
Santa Claus is the one who fills the space under our tree every Christmas and
that airplanes stay up in the sky because angels carry them. 

I remember wondering if Kevin realizes he is different. Is he ever dissatisfied
with his monotonous life? 

Up before dawn each day, off to work at a workshop for the disabled, home to
walk our cocker spaniel, return to eat his favorite macaroni-and-cheese for
dinner, and later to bed. 

The only variation in the entire scheme is laundry, when he hovers excitedly
over the washing machine like a mother with her newborn child. 

He does not seem dissatisfied. 

He leaps out to the bus every morning at 7:05, eager for a day of simple work. 

He wrings his hands excitedly while the water boils on the stove before dinner,
and he stays up late twice a week to gather our dirty laundry for his next day's
laundry chores. 

And Saturdays-oh, the bliss of Saturdays! That's the day my Dad takes Kevin to
the airport to have a soft drink, watch the planes land, and speculate loudly on
the destination of each passenger inside. "That one's goin' to Chi-car-go!"
Kevin shouts as he claps his hands. 

His anticipation is so great he can hardly sleep on Friday nights. 

And so goes his world of daily rituals and weekend field trips.   

He doesn't know what it means to be discontent.   

His life is simple.   

He will never know the entanglements of wealth of power, and he does not care
what brand of clothing he wears or what kind of food he eats. His needs have
always been met, and he never worries that one day they may not be.   

His hands are diligent. Kevin is never so happy as when he is working. When he
unloads the dishwasher or vacuums the carpet, his heart is completely in it.   

He does not shrink from a job when it is begun, and he does not leave a job
until it is finished. But when his tasks are done, Kevin knows how to relax.   

He is not obsessed with his work or the work of others. His heart is pure.   

He still believes everyone tells the truth, promises must be kept, and when you
are wrong, you apologize instead of argue.   

Free from pride and unconcerned with appearances, Kevin is not afraid to cry
when he is hurt, angry or sorry. He is always transparent, always sincere. And
he trusts God.   

Not confined by intellectual reasoning, when he comes to Christ, he comes as a
child. Kevin seems to know God - to really be friends with Him in a way that is
difficult for an "educated" person to grasp. God seems like his closest
companion.   

In my moments of doubt and frustrations with my Christianity I envy the security
Kevin has in his simple faith.   

It is then that I am most willing to admit that he has some divine knowledge
that rises above my mortal questions   

It is then I realize that perhaps he is not the one with the handicap . I am. My
obligations, my fear, my pride, my circumstances - they all become disabilities
when I do not trust them to God's care   

Who knows if Kevin comprehends things I can never learn? After all, he has spent
his whole life in that kind of innocence, praying after dark and soaking up the
goodness and love of God.   

And one day, when the mysteries of heaven are opened, and we are all amazed at
how close God really is to our hearts, I'll realize that God heard the simple
prayers of a boy who believed that God lived under his bed.   

Kevin won't be surprised at all!   

When you receive this, say a prayer. That's all you have to do.. There is
nothing attached. This is powerful.   

Just send this to four people and do not break this, please. Prayer is one of
the best free gifts we receive. There is no cost, but a lot of rewards.   

FRIENDS ARE ANGELS WHO LIFT US TO OUR FEET WHEN OUR WINGS HAVE TROUBLE
REMEMBERING HOW TO FLY"

Thanks Kathy! (I think)

     Good friend and reader, Kathy, shot this to me and I thought I would share it.  I hate to do this, but I'm not above it:  Kathy please bring us up to date on your condition, we care.  With your permission I'll print that too.

     Below, from Kath:

Subject: for those  50+ or if you're not, keep it in your memory bank because it's coming!!

    Q: Where can women over the age of 50 find young, sexy men, who are  interested in
 them?

     A: Try a bookstore under fiction.

 Q: What can a man do while his wife is going through menopause?

     A: Keep busy. If you're handy with tools, you can finish the

basement.  When you are done you will have a place to
live.

      Q: How can you increase the heart rate of your 50+ year old

husband?

     A: Tell him you're pregnant.

     Q: How can you avoid spotting a wrinkle every time
you walk by a mirror?

     A: The next time you're in front of a mirror, take off your 

glasses. 

    Q: Why should 50+ year old people use valet parking?

     A: Valets don't forget where they park your car.

    Q: Is it common for 50+ year olds to have problems with short term

     memory storage?

     A: Storing memory is not a problem, retrieving it is a problem.

     Q: As people age, do they sleep more soundly?

    
     A: Yes, but usually in the afternoon.

     Q: Where do 50+ year olds look for fashionable glasses? 

     A: On their foreheads.

     Q: What is the most common remark made by 50+ year olds when
 they enter antique stores?

     A: "I remember these".

   Thanks Kathy, please keep us in the loop.

Find Then Follow Your Passions

     It is our passions that bring value to our lives.  The emptiness of a medical diagnoses initially terrified me; the thought that this was what I'd be a slave to pain for the rest of my life.  Sure, this sounds overly dramatic, but I can't say I haven't felt emptiness from time to time, in the middle of the night when the weight of the blanket on my toes caused me to yell out in pain.  It's sickening.  This isn't, and never was me.  I take pills to get through an ordinary day.

     I've come to find that this isn't me.  It can be if I let it.  Perhaps we've all already found out that our lives, while different than they were, are not wrapped in the empty husks of medical prescriptions.  Instead, we've found ways to overcome our deficiencies, discovered that we're more than what we first feared we'd become.  We began to find our passions.

     Let me tell you a story.

     I was browsing in a junk shop with airs: the shop-owner had hung-out an antique sign.  Inside I found a dusty old wooden bowl near some old tools.  It was a beaut.  Timeworn, cracked, and to my inexperienced eye, cut from a large maple.  I saw it and had to have it for my den.  On the way out, I bought a few bags of marbles thinking they'd look nice in the hoary bowl.

     I was right.  I have an old roll-top in my room, and set the bowl on a table with a lamp next to my desk.  But, I hadn't bought enough marbles.  Living in New England, you can't spit without hitting an antique store, but I figured I'd try Ebay instead.

     Naturally if a thing is collected, it's on Ebay.  That evening I spent at least an hour browsing around the marbles, find that there were many, many different sizes, shapes, colors, makers, and importantly, manufacturers.   Modern marbles, with some exception are poor imitations of the real thing.

     Marbles are an anachronism.  Who plays marbles?  Who has in the last 50 years?  How about 80?  Yet, these old marbles are still around.  And you should see them.  They are truly magnificent.  I watched several auctions for a run of the mill collectible marble, a Peltier Rebel (Peltier is the company that made the marble in the '30's; Rebel is the collector name given to the marble that has certain colors and patterns).  The auction ended with 18 people having bid, and the marble selling for around $70.00 or so.

     The most expensive marble on the 'Bay that night was $1800.00.  I started buying marbles.

     I got burned, read some books, joined an on-line organization, spent too much, but in the 3 month project, built a pretty impressive collection.

     I showed my dad.  He's 72 and couldn't name many of them, but the look in his eyes was like that of a woman seeing the diamond in an engagement ring after having just been proposed to.  He knew some, owned a few that I had and blew his stack when I told him what I'd paid for them.  "They cost a penny when I was a kid!"  Consider the cash on cash return: 120x your money in 72 years.  Beats the hell out of real estate.

    So I've become an unapologetic collector.  It's a blast.  If there's one thing my life could use right now, it's a blast.  I've put a couple of pictures in this article.  I hope they came out okay.

     Think of this: If I buy a marble for $20.00, then manage to sell it for $23.00, I just earned a 15% return on my cash.  If you're gonna try this imagine grown men and women who don't just think about their childhoods, they buy little pieces of them.

     Grab your hobbies, your passions and hold them tight.  Like everything, God gave us this stuff.  Some of it, that Mantle Rookie baseball card, we threw away; others we get a second chance at it. 

     Kind of like your life today; you get a second chance at it.

Subject: Attitude

       This post is submitted by a reader, by email, to me.  Without the expressed permission of the writer, it is posted anonymously.  I like it so much that I urge the writer to drop me another note claiming authorship.

     This writer "gets it."  Sure, we suffer pain.  In truth it's hard for me to consistently view this pain as simply a state of the human condition, as another writer suggests in a comment beneath the post, Pain Unto Despair."  As both writer's suggest, the spiritual choice at our daily fork in the road is best made with the faith and knowledge that God only gives us what we are able to handle, no more no less.  Let's face that choice with a smile and a prayer of thanks.  His will be done.

Subject: Attitude

There once was a woman who woke up one morning, looked in the mirror, and noticed she had only three hairs on her head.

"Well," she said, "I think I'll braid my hair today!" So she did and she had a wonderful day.

The next day she woke up, looked in the mirror and saw that she had only two hairs on her head. "H-M-M," she said, "I think I'll part my hair down the middle today!" So she did and she had a grand day.

The next day she woke up, looked in the mirror and noticed that she had only one hair on her head. "Well," she said, "today I'm going to wear my hair in a pony tail!" So she
did and she had a fun, fun day.

The next day she woke up, looked in the mirror and noticed that there wasn't a single hair on her head.

"YEA!" she exclaimed, "I don't have to fix my hair today!"

Attitude is everything. Have a Good Day!

Get Ready for Christmas

    I notice about this year and the past couple, when I became disabled, that this season although unseasonably warm, brings to my life good cheer, beauty, and hope for the new year.  Not much of significance changes from Christmas to Christmas.  Every Christmas is festive.  People are nicer.  Everyone seems to make an effort to spruce things up, and decorate.  Heck, even my local newsstand looks pretty; lights are blinking along the top of the Instant Lottery scratch-off tickets display.

     Getting ready for Christmas...lots of shopping...crowds at the mall. Last minute plans to visit my folks.

     Although it looks more like March than December, I can visit the snowy Christmases of the past.  This is my 47th.  I'm at or past that midpoint, now.  Forty seven more will mean I lived into my mid nineties; if I make it 'til then, God willing, I'll be a Great Grandfather and probably waiting for my Red Sox to match the heroics of that great team of '04.  The year will be 2063.  My wife will ask me if I remembered to pay the phone bill.

     I'll have a new home.  I hope it will overlook the ocean and that I'll have a porch.  I'll drink coffee and read the paper in the morning. Before lunch, I'll sit in my rocker and shoot my hunting rifle at the whales.

Thanksgiving, Redux

       I enjoy the days after Thanksgiving.  The turkey is finally gone, the dog has miraculously jumped onto the tabletop to finish-off the pies, and the extended family has left for their homes.  The kids are back to school.  College football has reached that fevered pitch, and I wait patiently for the BCS to make-up it's mind, on which schools should complete in the important bowl games around New Years Day.

     How about that:  "I enjoy..."

     I don't often have a bad day when I'm able to express gratitude, and say "I enjoy..."

      I think many able bodied people can't grasp how important those two words can be to us. 

     Thanksgiving in the Sullivan home is unique in many ways.  It is the convergence of diversity.  My wife's family is Jewish to the extent that we have a Kosher home.  No shrimp cocktail, here.  Her parents are European, and survived the concentration camps.

      My family are a mix of Boston Irish and Scots representative of all manner of Roman Catholics, from the fallen to the observant.  My youngest brother, Chris married a Cuban woman.  Her father went to High School with Fidel Castro, both of whom played on the same baseball team.  Mr. Palacio was a catcher; Castro, a pitcher.

     Kids galore romped though the house.  We ate like hogs at the trough, napping between courses in front of the football games on TV. 

      Nothing changes.  I remember Thanksgiving when I sat at the kid's table.  On other Thanksgivings, one of my uncles by marriage, would talk to Mr. Palacio about Castro's shortcomings and he would know because his father-in-law gave Castro a try-out for the Washington Senators in the early '50's.  My uncle's dad was finishing his own Hall of Fame career with the Red Sox.

     We tell the same old stories, but the get funnier by the year.  Some of us have passed, but it's not hard to imagine a Thanksgiving fifty years from now, when the old pictures are hauled out.  And the jokes are funnier still.

     Another year gone by, my favorite holiday has passed.  We've agreed, almost by silent consent, that no bad memories invade this holiday.  We enjoy it too much.

     Thanks be to God for this day when we celebrate; thanks be to Him, because on this day we laugh; Thanks be to God for a day without anger or rancor, spite or malice, resentment or jealousy.

    On Thanksgiving, we have gratitude and love one another each in our ways, and share a perfect day.

     Is there a good reason why everyday couldn't be a bit like Thanksgiving?

The Road to Stowe, Vermont

    I live about 300 miles South of Stowe, Vermont.  My wife and I were long overdue for a private, no kids or couples vacation.  If you're married and one of you has arachnoiditis, it's hard to adjust to the ebb and flow of the magnitude of the afflicted partner's pain.  So why subject myself to a six hour drive?

     We'd found that just talking was becoming more and more difficult to do.   And we've got a good marriage.  Speaking for myself, this unexpected circumstance became nearly as devastating as the daily pain I feel.  There isn't another person on the Earth with whom I'd rather spend time with than my wife, but I found myself isolating, too often embarrassed to talk about me, us, and our life together.  Private time was just what we needed.

     We were going to fly, but at the last minute I changed my mind and I decided to chance the 6 hour drive.  Time together in the car, a seat that reclines, the foliage, the discomfort of airports made up our minds that flying, which takes about as long as the drive, was a bad idea. 

     We'd taken many long drives together and I've always enjoyed the intimacy of a car ride; we don't listen to the radio, instead we talk.  A long chat while enjoying the scenery through the mountains sounded like a good idea.  It was.

     We stopped about every hour so I could walk around loosening my back.  Nonetheless, it was a tough but enjoyable ride.  It took me 2 solid days to recover from the drive North; lots of naps and short day-trips into the cutsie shops in town.  A quick drive through Smuggler's Notch before Winter conditions closed it down, and antique shops filled our time during the day.  Nice quiet dinners casually eaten in small cozy restaurants before bed, interrupted by slow walks under a magnificent star-filled sky...the air smelled of snow.  This is my favorite time of year, spent with the woman I love.

     Unfortunately, just as I was feeling a bit better, we had to drive home.  I'm just, a week later bouncing back from the drive South.

     So, I learned a few things:

• Those things that are meant to be, like loving my wife, don't really change.  I still love her as much as I always did. 
• The gifts that God gives, like my wife loving me, will only change if I refuse to accept them.
• The truly valuable things in my life aren't always free.  So, when when gifts are bestowed without cost, be really grateful.
• When it hurts, I appreciate His gifts even more.

     I waited 20 years for a quilt, and when I found the quilt I wanted, I knew it was the one I'd been waiting for.  A silly thing, a quilt and there it was on the weekend when my wife and I drove 6 hours looking for the marriage which had never even been taken away.

     I don't believe God gives us "stuff".  It's funny though, when we do right things, and in doing those things we serve one another little good things sometimes happen.  I love that quilt, but I didn't endure a 6 hour drive to buy a quilt; my wife doesn't like that quilt, at all, but she won't deprive me of it.  These acts of love, enduring pain and enduring "risky" swatches of cloth, are the tiny little things we can do for one another, things we have done for one another and by His grace, will continue to do for each other are gestures of love: I did it for her, she did it for me, those things when we serve one another without expectation for some pay-off, are, I think, what He means when he speaks of love.

     What a great future awaits if I can serve an interest ahead of my own.

     What would a day be like if everyone did just one thing for someone else before doing for oneself?

    

How Do I Get There From Here?

      I won't deny that it's been a struggle with pain recently.  I hate when people tell me I look better.  Better than what?  I'm still a crab.  I still walk with a cane.  The morning hours are still better, once I've awakened and taken a shower, than the afternoons when I run out of gas, get tired, and begin that steady build-up of what first feels like bugs under the skin of my ankles and shins.  This pattern doesn't change very much from day to day.  When I'm really cranky from pain, it seems insincere to praise God for the life He's given me.

     What I never expected was that I wouldn't be able to haul myself to better health through physical activity.  To be honest, I must admit that I am able to do things, perform actions today, that I didn't think were possible months back.  I realize now that I must often pay a price for doing some things, a high price, but that often that price is worth it.

     I can:

• Gently work-out at the aftercare program at the Rehab hospital near my house.
• Drive to NYC, about 20 miles from home.
• Stand through an entire football game watching my son, Zac play, or my daughter Rachel flip through the air leading cheers.
• Read with higher concentration than before.
• Create a new blog, Plus Ultra, which is off to a slower start than I'd hoped.
• I now can sit a bit longer than an hour.

     I started BioTherapy about a month and a half ago.  I learned  through this to change myself, a Herculean task, from an "all or nothing" person, to a compromising, "find the middle ground".  Here's what I do:

1. Learned a deep relaxation technique, that surprisingly works.  I have to do it before the pain cycle ramps up, but it does forestall the onset of deep pain.  It requires practice.
2. Approach hurdles in my life the way I had approached problems, by breaking the hurdle into small component parts.  Since I isolate from my wife, my BioTherapist suggested that 2 or 3 times a day I visibly show affection towards her.  I'm embarrassed to admit that I'd driven my wife from me because of the shame I felt because of my incompleteness I felt as her lover.
3. Begin to read the paper, which had been a ritual prior to my injuries, the way I used to.  In the old days, I had a hieroglyphic system for reading and taking notes, then saving all of the financial papers.  I struggle with my concentration, so I'd fallen into the habit of skimming the news.  Today. it takes me several days to "read" the paper the way I used to, but I'm getting there.

     It starting now to feel as if I'm living my life, instead of it living me.  Isolation will fall by the wayside if I control the circumstances when my wife and I throw the doors of the house back open.  We can have people over; I can always lay down.  We can try a movie; we can always leave.

     I feel a bit like a child.  The simplest things in life, things that a child might have to be taught, I have to be taught.  I had a wicked slump, a toxic sump of self-pity and loneliness.

     I learning that how I live my life will be different-the techniques are new.  What I know and love is still there, I've just had to accept that there's a new way to get there.  God bless, Colin

Pain Pumps and Me Part 2

  Hi,

If you read part 1 and remember it then you know I left off where the neurosurgeon told me I needed a pump and left the room without any further discussion.

The nurse came in and ask what the doctor had told me. I told her he said I need a pump. I asked about it. She told me it was a way of putting pain medicine right on the nerve where the pain originated. I was given an admission date and told to bring some loose regular clothing to wear for PT along with my pajamas and other necessities. I would be in the hospital for about three weeks.

I arrived at the hospital on Sunday afternoon. Later on in the evening people started stopping by my room and doing things such as measuring me from head to toe. I was asked a whole bunch of questions by a psychologist. I had to try to walk on my toes then my heels. My reflexes or more like my lack of reflexes in my legs were recorded.

Then the neurosurgeon came in. He wanted to know if I had any questions. Of course I had questions. All he told me was that in the morning I would be taken to the OR where he would insert a needle into my spine and connect it to a catheter which would be brought out through a hole in my right side. It would have a Hep-Loc on it just like an IV. I would get morphine thought it twice a day. Then we would just have to see what happens. It was a study to see if the pain pump implant being used on terminal cancer patients would help chronic back pain patients too. A "study" for the FDA didn't make it sound as if it was an "experimental" treatment but I found out several months later it was considered "experimental" and my insurance companies wanted their money back. Some patients with private insurance got stuck with big bills because prior authorization wasn't obtained. I had Medicare as my primary and my husband's insurance as my secondary. I didn't have to pay anything because I wasn't told beforehand that it was "experimental" and wouldn't be covered. It wasn't a big deal because he only had two Medicare patients in his study. I don't know how the other patients resolved the matter other than knowing a few got stuck with big bills.

This was definitely an Informed Consent issue however the "come back" on that was simply that it was a study so no one could be told what to expect or the results would be biased. (Where have I heard that argument before? Most doctors don't tell the patients everything before the patient has to make a decision. It might scare us.)

When I woke up after the minor surgery I still felt groggy all day and the next day and the next day. I needed to use the bathroom. I itched. I was nauseated. I had a headache. What in the world was happening? My husband helped me to the bathroom where nothing happened even though my bladder was full and it hurt so bad. I called the nurse. She said that was normal and would be right back. She gave me a shot and in about 30 minutes my bladder started acting normally again. One down and four to go.

I itch and sting all over. Here comes the Benadryl (which I could still take back them). It doesn't help. I'm miserable. This goes on for two days before the doctor decides I'm allergic to the morphine and need dilaudid instead. I get it three times a day and the itching stops. Two down and three to go.

I'm nauseated and have a horrible headache. Is both being caused by the dilaudid? Are they one problem or two? Is the stomach ache causing the headache or vice versa? Here comes the Phenergan. It's good for both. They settle down after a couple of days. Four down and one to go.

I'm high. I'm getting too much dilaudid. I can't think or stay awake. I can't do PT because I can't maintain my balance. Walk? Are you kidding me? I was not taking anything for pain before I had this needle and catheter put in me. It's just too strong. The doctor has to take the dilaudid out of the pump, dilute it and put it back in. Why? The first pumps didn't have batteries and computer chips. The medicine was put in the pump and each pump flow rate was different. The goal was 1 ml per 24  hours but mine ended up being .86 m. per 24 hours. There was no way to control the pump except by increasing or decreasing the dilaudid/morphine ratio with the saline base.

The wisdom of the day was that anything less than 6 mg of dilaudid a day wouldn't be strong enough to do the job. No one considered that a person without cancer level pain and certainly one who wasn't taking any narcotics needed very little to do the job. It was interesting that while I was asking every day for the narcotic to be lowered the rest of the group were asking for more.

For two weeks we had PT each morning and afternoon. Every move was recorded. We had to show the world that with our pain lowered by the pump we could return to more productive lives.

For two weeks we talked each day with the psychologist and/or the Social Worker. We took written tests such as the MMPI. We had our skin temperatures taken  while we were doing sessions of relaxation therapy. We were poked and prodded. Some people got mad. A couple even demanded the trial stuff be removed and they left. The rest of us were very happy with out two + weeks of pain relief. We had pumps implanted.

When I woke up from the first part of this study, the catheter implant, my pain was almost gone. I had pain that started at my hip and radiated down my right leg into my foot. I could hardly get the leg to move so I could walk. The pain never let up. It was torture. Suddenly, it was almost gone. I could walk. I could do whatever the medical people asked me to do. But, I still was getting too much dilaudid. I told and told them but it was useless. When the doctor implanted the pump in my right side just below my waistline, it still had the six mg strength medicine in it.

When I woke up from the implant surgery, I hurt. Oh, did I hurt! This wasn't major surgery but when you have a six inch cut in your side, it hurts. The wisdom of the day was that the pump took care of ALL pain so none of us were given pain medication for our surgical pain. That was torture again but it only lasted for a couple of weeks. Three days after the implant, I went home.

Two days later I couldn't stay awake. While the medical staff had me up and going, the dilaudid didn't bother me as much. When I came home I went to bed to let the incision as instructed. I found myself alone inside a nightmare I couldn't make myself wake up from. I was overdosed. I did manage to wake up enough to call for help. The local ER didn't know anything about a pain pump. They thought I was crazy. No one had even heard about their use in cancer patients. By that time my husband had arrived from work. He called the neurosurgeon. He took me on the hour and a half road trip back to the hospital. Their ER was ready for me. I got an IV with Narcan. When I was taken to my room, the neurosurgeon came in and did the dilution of my pump medicine again. It was still too much. It took another two days but he finally downed the dose to 2 mg per ml with .86 ml going into me every 24 hours.  That is not much medicine. I was on this dose for over seven years without oral narcotics for back pain.

Two years into this adventure, I noticed my pain level went high and I felt like I was getting systemic narcotics. I called the pump clinic and was told to come in right away. I did. They took me to x-ray with the intentions of putting a dye into the catheter and see if there was a leak. There was no need to do that. The x-ray showed that the catheter was broken into two pieces. The next day it was replaced and things went on as usual. Or did they? My first needle had been placed epirural. Now they knew needles need to be intrathecal. He put in a new intrathecal needle and catheter. He placed it higher up into the thoracic region. He left the old needle in place simply stating that it is too dangerous to remove one after it's been there for some time.

I gained weight. I lost weight. I gained weight again. The result was that the pump pulled loose from it's anchors and was just barely under the skin. Then one day at a refill, it poked out from under the skin. Surgery had to be done to put it back and anchor it again. This time it didn't hurt so much because I got oral medication for the surgery pain.

Then I fell, twice on concrete. I landed on my tailbone both times. About a month later I started to notice that my feet felt odd when I was in bed with the covers over them. I started to wonder what's going on. Gradually pain creept in. The neurosurgeon who put the pump in had retired and sold his practice to a woman neurosurgeon from Texas. She bought his refill clinic too. After a few months she moved to another hospital so us pump patients had to follow. I told the pump nurse about the increasing pain and numbness. The doctor started seeing me at every refill visit. She ordered MRI's every few months. She told me I must never fall again. Falling makes the "plastered" nerves pull away from the thecal sac. It's a new injury and the adhesive arachnoiditis can progress (get worse) at a rapid pace. There's no known way to stop it. This is where ESI's come in as an attempt to stop it but I'll save that topic for another time. She started increasing my dilaudid and put Clonidin in the pump. Nothing seemed to help. I did plateau out for a year or so but I was never able to cut back on the medicine. I had to start oral narcotics for two reasons. One is that the pump no longer covered the AA pain. The other is I have other health issues which cause chronic pain. They have finally realized that the pump only works on certain types of pain and it doesn't work like systemic medications.

Pain pumps use very small amounts when compared to oral doses. This is because the medication(s) come in contact with the Central Nervous System (CNS) and anything else in our spines. The medication(s) work differently. The aim is to stop the pain at it's origin. If the patient can get at least 50% of their pain relieved during a pump trial, then it's almost a sure bet the pump will work very well. The pump is now approved to use morphine, dilaudid, fentynal and Prilait which is a man-made version of the venom from a sea snail. I've not heard anyone mention that lately. After looking at all the possible side affects I passed that one by. They can also use Clonidine for the burning, stinging, electric shock type pain(s). Bupivocaine can be used for the neuropathy pain(s). I have fentynal, dilaudid, Clonidine and bupivocaine in my pump now. That is quite a strong mix but remember each one is just a small fraction of an oral dose and it's per day not per 4-6 hours.

I developed a seizure problem and fell many times. It's under control now but the falls didn't make my back any better. For the past ten years I've gotten slowly worse with the AA and also the other problems I have. The pump has kept my pain levels caused by my back problems low. At one point I thought I might be able to return to work after I got the pump but I got very sick with another illness that has no cure and not much in the way of treatment. The two together make my life very difficult. But there is one thing I have learned recently, I can't stand the pain without my pump.

The old one finally died and has been put out to pasture. Before it died it went slowly downhill itself. I got less and less of my medications. I hurt more. I developed new symptoms in my back. Were the new symptoms really "new" or what? The verdict is in. My AA is getting worse and it is doing it rapidly. Dr. Sarah Smith states in one of her papers that this happens in rare cases, so don't panic if you have AA. Usually it's a minor event that causes this to happen but I can't think of or remember nor have I noticed anything different, with one exception---I've been feeling better because my other health problems have gotten better. Since I feel better, I'm up more and more active. It may simply be that the extra moving around is causing this. My neurologist has said the same thing. So has the pain doctor. The neurologist says to get a power chair and use it. Stay off my feet and rest more. The pain doctor says be as active as you can for as long as you can. Since AA tends to do its own "thing" I'm going with the pain doctor but I'm getting the power chair just in case I really need it in the very near future. They take time to get approved.

Two weeks ago I got my new pain pump. At this moment I am in very low pain. The bupivocaine has knocked the neuropathy pain in the head. The other AA caused pain is covered up by the narcotics. But the pain pump is just that--for pain relief. It does not cure the underlying cause of the pain and/or other related back problems. They have to be dealt with. I could barely walk and had lots of pain. Now the pain is at an acceptable level for me but I can still barely walk. Why? My AA is progressing. I can mask the pain and that makes my life much richer and easier to live but that old AA is still there, doing its own thing. For now I'll continue to walk but like I said before, I'm gonna get that power chair too. I don't know what is in my future but I'm going to do the best I can today and not worry too much about it. Why? It's something I can't change. If I were told there was something specific that would cure me, I'd do it but there isn't. There are things in my world that I can change. I'm going to concentrate on those. There are still a few things I still good at doing. I'll do those. I've been bedridden needing 24/7 care before and I may be there again. In-between I'll do my best.

Chronic pain/illness takes its toll on the whole family. Suddenly one partner is sick, out of a job. Finances get low. Just when you think things can't get worse, they will. We have to be strong, not in body but in our minds. It's very hard when the AA process upsets our brains and the medications do the same. How do we get out of it? How do we survive? There just seems to be something in the human spirit and soul that calls us up and out to better things. Every person who has ever lived or will ever live, has problems. It's seems as if some of us get more than our share. AA is one of them. We got hurt by people we trusted to make us well. We've been lied to. Many have lost spouses or partners. Children turn away as do other family members and friends disappear.

We have the 2020 hind sight to tell people to stop puncturing spines when it isn't necessary. Now wait a minute! Didn't I just say that I have two needles in my spine one of which is putting four medications into my spinal fluid 24/7?  Yes, I did. However I already have AA and I have it bad. The pain pump is a last resort treatment. Use oral medications as long as you can stand the pain then think long and hard about getting a pain pump. I wasn't told the hazzards of having an intrathecal pump. I don't think I would have said no if I had been told because I was in such pain I would have done anything. I'd already tried everything neurosurgeons had suggested in the past. Oral medications didn't touch my problem. They were useless.

We don't know the long term affects of having a foreign substance(s) in our spinal fluid. It will be many, many more years before scientists will have enough information to even begin answering that question.

Thinking about having the pump trial? You have to remember that the body has to adjust to the new way of getting medicine. The trial isn't long enough to "fine tune" the medicines for maximum relief. If you do truly get relief with the flawed trial, then it's a good bet the pump will work for you. Will you still need oral medications for pain? That is an individual thing. What works for you might not work for me.

I've kept your attention far too long and probably said far too much. Just know that you are not alone in this world of chronic pain. There are many out here and we all need to help each other,

Wanda

A Brit remembers 9/11

     Allan Andrews wrote a beautiful memorium to the victims of 9/11; it's hard to call yourself a patriot, or even patiotic, if you can't remember where you were and what you were doing when you first heard of the terrorist's attacks on the US.

     I was at work, glued to the TV...shocked.  Most of that day was given over to a fruitful search for my brother, who was in the street watching from the foot of the World Trade Center, before he ran.  Guys who lived in my town died there with some old friends.

     We didn't lose any family.  We lost friends.

     But we also gained.  After the initial attacks, crowds swarmed to the site to help in any way they could.  We all saw the photo's of lines of people passing water; lines miles long.

     Americans did pull together in a demonstration of solidarity and charity the likes of which I'd never have expected.

     Some people belive a memorial of sorts should be erected on that site.  I strongly disagree.  It's a grave.

     Please do yourself a favor and read Allan's piece at http://www.allanandrews.co.uk/wp2/?cat=1 .  Despite our misteps, we're all just people.

     If some one says to you, "It could be worse.", refering to your condition, reflect on Allan's page and humbly admit, he's right. God bless, Colin

Family minus Dad = Crip Family

       Before Pain pitched a tent in my head, my family life was fun, active, loud, funny and boisterous almost all the time.  Now it's different.  It's still these things, but in a different way,  This is a short list of tasks that were exclusively mine prior to arachnoiditis.

     1. Long distance driving.

     2. Big fun like trips to an amusement park or the beach.  Special trips, like little honeymoons with my wife.

     3.  Coaching all kid's teams.

     4. Physical roughhousing with the kids.

     5. Long weekends and day trips with my wife.

     6. Working long hours.

     7. Holding public office.

     8. Sitting on various boards committees and councils.

     9. Socializing

     10. Trying to create a neat, pretty comfortable home that made my wife proud that I was her husband and my kids proud that I was their Dad.

     It sickens me today that my wife is now the long distance driver because she really dislikes it. 

     A couple of winters back, we drove to Montreal a few days before Christmas.  We hit weather just North of Albany, so it was a tough long drive.  I hadn't yet been operated on so I was the driver.  I was pounding up the Northway with four kids and my wife in a Chevy Suburban, 4 wheel drive.  We raced into the teeth of a storm, had some bad stretches, but knew that within 5 hours, we'd be in Montreal in a great hotel.  I was driving.

     That night I'd go to midnight Mass, which in Montreal is de rigueur.  The worst that could happen would be a flat, which would be a bitch to change in this weather but I could do it.  My only worry was losing a windshield wiper. 

     We had a great time up there.  Montreal is spectacular at Christmas, particularly when it's not twenty-below.  It was about 10 degrees, two feet of snow were on the ground, and I thoroughly embarrassed myself by speaking French with the locals. 

     We'd thought of shooting up to Quebec City, but didn't do it.  Instead, we swung home through the Adirondacks, and spent a few days in Lake Placid.

     I saw figure skating live for the first time in my life, rode the luge, stood at the top of the 90 meter ski jump, and one night monkeyed around on the very rink where the "Miracle on Ice" occurred.  The place was empty and unlocked; we all walked out to center ice.  Remember the disappointment of watching the tape delay, already knowing the US had beaten the Soviets.  We skated on the speed skating oval at night.  It was fun.

     We're going to Montreal this Christmas, but without adventure or spontaneity.  We're flying.  Brining special pillows, painkillers, but leaving my skates at home.  Too bad, I love to skate, especially at night, outside.

     We're going to the beach in a couple of days.  I love to swim in the ocean when the water is cold enough for the seals to be close inshore.  Don't swim with the seals because they're nasty little bastards.  It is fun though to see their heads pop out of the water nearby.

     Problem is it's about an hour's drive to the outer beaches where the water comes straight across the Atlantic and is so cold it's, brain freeze until you get used to the temperature.  Now, I can't make it an hour in the car.

     The insidious nature of chronic pain is that it drags everyone in the family with it.  I don't want anyone to suffer with me, but I don't want to be alone either.  All seven of us, including dog, cuddled on the couch watching mindless reality TV is fun, when we've earned it after a big fun day.  One by one they'd drop-off to sleep under a quilt, and my wife and I would have time together.  These days, this just doesn't happen.  First, no "BIG FUN"; second, whatever else the family did, they'd probably have done it without me (I'm not so much fun anymore. I hit the wall too soon); last, I'd already be asleep.

     Each of the tasks I've listed above, isn't a task, it's a gift that has gradually fallen away, and my family is left with me, and what I used to be.  I'm now trying bio-feedback, prayer, shrinks, exercise, anything to get back some part of what used to be my life.

     Sure, it's a brave new life...but I'd be lying if I said I didn't want the old one back.  Hell, part of the old one. Even for a day.

     Ask my wife and kids, who bravely accept a fraction of what I used to be.  They'd tell you the same thing:  just a piece, even if only for a day.  Lord  have mercy.  Colin

Around Every Corner is Something New

      In the late '70s I was in college and lived in NYC.  Prior to that time, I lived in Mass. and had never been to NYC, until I hitchhiked to Columbia U. for my college admission interview.   See, I was brokje and couldn't afford the bus.

     I was an athlete, was being recruited, so the school set this whole trip up; all I had to do was get there. I stayed with members of the team. They fed me, showed me around.

     After an uneventful first 150 mile hitch, a coincidence occurred.  I was in Southern CT., on I-95, which runs smack into NYC. But it's not as if there's sign on the road that says, Colin, get out here, and hop on the subway, train #1, south to the 116Th Street Station,  No, not at all.  I was lost but didn't know it.  Kind of like knowing that you've got to get to Silver Lake in LA, and that Rte 66, runs right into LA. Being on Rte 66 isn't that much of a help if you've gotta get to Silver Lake; just like being on I-95 isn't much of a help if you've gotta get to a specific location in NYC.

      Unless one of the Assistant Columbia football coaches, just happens to be driving south on 95  and arbitrarily picks-up a kid who just happens to be going exactly where he's going.  That happened to me--I was given a ride to the Columbia U. campus by a stranger who was to headed for the exact address I was going to in one of the largest cities in the World.

     I pick-up hitchhikers, unless I'm with my family.  They tend to tell pretty good stories, unless they're violent.  Both have happened to me.  Either way, It's always an adventure--Life just keeps throwing things at you...if you let it. I told you about me and God; I believe that's God, but you believe whatever you want. 

     I couldn't believe the size of NYC.  It took my breath away when I rounded the corner from somewhere in the 70s heading East from Madison to Park Ave.  From that vantage there's a strange optical effect: North, East , South, and West; any direction you look it's rows of buildings off to the vanishing point.  Life getting weird,again.  It's like an Escher etching; like a joke, Can Any city be that big!  So big, that as far as you can see, it's building after building after building.

     I'm glad I went around that corner. I felt no bigger than an ant.  About as significant , too.

    I could go on and one, so could you probably. So What's the point? Look at the  world through the eyes of a kid who's seeing a carnival for the first time. Around every corner is something, wierd, new, wild, wacky and it's all there for you.  There might just be joy around the corner. Hell, maybe even a winng Lotto ticket that some poor schmuck dropped!

     But it's only there if we take the steps around the corner (What would Berkley, or Hume say! Gasp!).  Only if we're willing to look can we see what's right in front of us. 

     Or we can hang-out in the house.

A Quick summary of what I'm doing to get better

1. Accept that my life has changed, and that it's my responsibility to make the most of what I am.
2. I believe in God, and pray for help. I also thank God for a shot at a new and different life.
3. Build a team of medical supporters who know me, know what I want and take their advice.
4. Good days and bad days just happen.
5. Look at the big problem, break it into it's smaller component problems then solve for these smaller problems. The big problem then starts to fix itself.
6. Do something positive and different every day--even if it's tiny. Remember any plan attempted today is better than a great plan scheduled for tomorrow.
7. Stop feeling sorry for myself, and look at how my life has changed all of those lives around me.

I'm no saint, I do the best I can and I screw-up more often than I'm successful. All I can do is my best.