Chronic Pain Lifestyle

Lent, 2007 for My Wife

      It seems that the big theme in my life in the past few years since the onset of arachnoiditis, has been subtraction: the removal of physical capabilities, the deterioration of my health, a test of my faith, the loss of the physical love of my wife, loss of my career, etc.

     This year for Lent, Blessed Mother pray for me, I want to add back into my thoughts a new and deeper commitment of trust, faith and love of The Lord, Jesus Christ.  I want to open my heart to all people, those closest to me and those I dislike.

     Most of all, for the 40 days leading-up to Palm Sunday, I want to put my wife ahead of me.  I want her wishes met ahead of mine so that those wishes become ours.  I pray not to lose my temper with her, nor to raise my to her voice in anger. 

     Although I'm in pain, for these 40 days I pray that her agenda supersedes mine. 

     I want to add back into her life my love, which through the trials of my disease, I've wrongfully withheld.  I want my wife to be my girlfriend again.

     God bless you, your husband.

      

It Was A Really Fun Party

   Tonight my husband and I went out for fish, with some friends of ours. It’s Friday night and here in Wisconsin, most people go out for fish on Fridays. It’s a tradition.

John and Arlene, Gail and Glenn and Bob. We had a great dinner and I thoroughly enjoyed hearing John, Arlene, Gail and Glenn talk about their recent trip to Hawaii. The pictures were beautiful and it sounded like they had a great time.

We sat and visited for a while after dinner and then we all said our goodbyes and walked outside into a snowstorm. It wasn’t snowing very much when we arrived, now it is snowing about 1 inch an hour. That’s a lot of snow.

When we got home I sat and took care of a few things around the house, all the while I was thinking what a fun night we had. Good dinner, good friends and no one was in a hurry. All of us are relatively normal, not boring, just normal. Just a nice group of people.

It started me thinking about something I read about Paris Hilton’s recent birthday party. Apparently another celebrity was celebrating his 40th birthday on the same night so that most of the “A-Listers” as they like to be called, were not available for Paris’ party. So she sat and watched the entertainment for the party. I swear this is true.

Paris watched a group of midgets lead a pack of goats around the room. That’s right a group of midgets leading a pack of goats.

Why?

Seriously why is that entertainment and is it supposed to be funny? If it is I don’t get the joke. Unless perhaps the joke is that she wanted to actually see this at a party. I’ve nothing against little people or goats, but I don’t really see either of them as entertainment.

Do you suppose this is what differentiates us from the A-Listers? Is this the “litmus test” that separates the society folks from the rest of us?

Or is this just a really stupid idea? I’ve given this some thought and that in itself was hard to do. I think the society folks are kind of like the people that get all of the jokes in the editorial section of the paper.

I get a lot of them, but some of them reference something I haven’t heard or read about and therefore, the joke goes right over my head. I imagine people that understand those jokes are more in-tune to the pulse of America than me. That makes them special, much smarter than the average person and makes them tell jokes that only about 1/2 of 1% of the populations understands it.

It’s like the assumption that the air is different, you know the “million-aire”. The very idea that they live a life so different than ours, we can not even imagine all of the things that they know, the things that they do or even what is expected of them. It’s like they are leading life that is not only privaleged because of their wealth, but also because they know more than we do, than the ordinary folks, you know, us.

On the otherhand, if having a group of midgets herding a bunch of goats around your house at a party is your idea of a good time, maybe you just need to get a job or something. I mean in your whole life have you ever been so bored that you asked someone to hire you a group of midgets to herd goats around your house for a party?

I think if someone did that in Wisconsin, the midgets would have been quietely paid off and someone would return the goats to the farm and the person who hired them would be quietly sent to a home for some “rest”. We would then only talk about that “Goat Incident” in hushed tones, like some kind of terrible ordeal that could ruin someones good name. And we would all be saying a prayer that the poor soul would get her senses back and realize that there is no place for goats at a party.

The A-listers didn’t do that. They just wrote about it in the society page as though it was normal. The only thing that caused a scandal, was the lack of A-Listers who were there to witness the goat parade.

I guess I like being with regular folks. We didn’t have any goats in the restaurant or for dinner and no one even brought them up. And we had a good time anyway. I guess I prefer living with the poor folks. I wouldn’t even know where to go to hire a bunch of goats, do you?

Have a great week. I’ll be in Florida until March 4th. Hope you are all well.
Anne

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

      

It’s Colder By The Lake

   My puppy Dino, whined and needed to go outside last night at about midnight. He was in his kennel in front of the closet in my room. When I heard him whine, I got up and put on my slippers and took him outside.

Standing in the backyard at midnight in my slippers, Daytona sweatshirt and pink plaid flannel pants, looking at the stars it was very peaceful.

As Dino did what he needed to do, I was thinking about how different my life is now. Not working, no dress code, etc. I was also thinking that in cold weather my back hurts more. In the cold and damp weather, it hurts the most. But it was beautiful outside and so quiet. Except for a noise that was getting louder and more annoying.

What in the world is making that noise?

It was my teeth chattering.

Welcome to winter in Wisconsin.

I hurried indoors and went to the kitchen to get a glass of water. I glanced at the thermostat outside our kitchen window. It was 22 degrees BELOW zero. That’s right below zero. That’s cold.

Now I know what you are thinking. How could I be cold? It’s not like I haven’t been outside when it was 20 degrees below zero before. Remember, I grew up on Lake Superior. Lake Superior folks know all about long, freezing cold winters.

But it’s different now. I don’t live in Ashland anymore, and I’m not the same young kid I was back then. For some reason or other, my back hurts more the colder it gets. I guess it’s either my imagination or possibly the 4 titanium cages in my back. Did I mention that before? I thought so.

I remember when I was in grade school at Beaser, we had a special program. It was a music major from Northland College, he came in with his guitar and taught us some songs and talked about folk songs and their origins.
Toward the end of the hour, he sang an original song.

The song he wrote was called “It’s Colder by the Lake”. Now if any of you live in the north or midwest, you’ve heard the term, it’s colder by the lake.

Every weather person uses that term to explain why it is always a little more miserable, sorry I mean, why it is colder the closer you get to the lake.

I don’t remember the whole song but I do remember parts of it. Here goes:

“I had on 2 pairs of long johns
and 3 pairs of slacks,
2 ski sweaters
and a hat to match.

Then I got up and started to get dressed.”

That’s all I remember, but you get the idea. I never really thought that Ashland was especially cold. When you grow up there, you don’t really think about it. It just seemed normal to wear long underwear, pajamas, socks and slippers and a cap to bed. Didn’t everyone dress that way?

Sitting here thinking about how cold it is and how this reminded me so much of home, got me thinking about the cold and ice. All that ice in Lake Superior. I always wanted to skate across Chequamagon Bay to my Gramma and Grampa’s house in Washburn. I was sure I could skate that far.

Beyond Washburn, further along the bay is Bayfield. Bayfield is a very cute little town. Big houses over look Lake Superior and Madeline Island. In Bayfield you can catch the ferry back and forth to Madeline Island. The ferry runs all year round except for winter. I believe that they usually stop the ferry in November.

When winter arrives, the residents of the island or folks in Bayfield that just want to go to the island, must wait until the ice is safe for driving your car across the bay. Or they can take one of those air boats that go over the ice or water.

When the ice is thick enough to drive on, they put a notice in the paper and people begin driving cars and snowmobiles back and forth. Every year it was the same, nothing special, just folks driving back and forth. Occasionally of course, someone would wander around on the ice and find a spot that wasn’t very thick and they would fall in.

It was March of 1977, I was seventeen years old and I was home reading the newspaper. I was reading an article in the Daily Press about someone who was interested in putting an A-frame home on the island. Normally this would mean shipping the home (it was a prefab home and it was furnished) by truck to Bayfield and then using the ferry to get the truck and the house to the island.

In order to do that, they would have to wait until the end of May when the ferry was running again. Additionally, there would be the additional cost of using the ferry to move the truck and it’s load.

Now I don’t really know how many people were involved in the decision about how to get that A-frame home to the island. I’d like to give them the benefit of the doubt and say that they were all drunk at the time, but then again maybe they are just really optimistic people.

What did they decide? They decided to drive the semi truck, with the house on it, over the ice road to the island. This would get the house there right away and they wouldn’t have to pay for using the ferry. How economical and timesaving!

Are you shaking your head in disbelief? Even at 17 I knew this was not a good idea. So when all three of the Duluth MN TV-stations sent a crew to Bayfield no one was surprised.

There it was the house and the semi, slowly sinking into the bay. Every night they would give an update on how much further the house sank and finally after just a few of days it was completely submerged. No one was hurt in the accident. This isn’t surprising if you watched how slowly it sank.

At one point someone had the idea to use a crane to lift it back up. So they hooked up a crane to the roof. Unfortunately when they started up the crane, it pulled the roof off of the house and the bottom fell out along with all of the furniture and appliances.

They were able to retrieve the truck, but the house was a total loss. It eventually came to rest about 100 feet below the surface, not very far from the shoreline in Bayfield.

I don’t know what is worse, losing the house and it’s contents or the embarrassment of thinking this would work.

But what if it had worked? What if the truck had crossed over the ice and arrived on Madeline Island just fine?

Well, my guess if that the 3 TV news crews wouldn’t have shown up to broadcast the success of this move. There would not be any stories for the newspaper if the house had just been delivered in good condition.

But there it is, we don’t want to see a successful house move, we’ve all seen that. The news was that this didn’t work and the house fell in the lake.

It’s a lot like having arachnoiditis. We’ve all seen all the reports about back pain, we don’t need a news crew to tell us that for many patients there is no way to cure or fix the problem. For people like us with AA, there are no magic pills or new surgical techniques to fix what’s wrong.

But unlike the house, we are not a total loss. Sure our having AA hurts and it doesn’t stop hurting. Some days it hurts so much you can’t even imagine how you will ge through the day, but we do. And that isn’t the end of the story for us.

We are not going to lay dormant like a house at the bottom of the lake. I believe that there will be a solution for us and sooner or later, something good will come our way. Until then it is in our best interest to stay on the shore and wait for a safe crossing.

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.