Chronic Pain Lifestyle

A Year in the Life of Chronic Pain Lifestyle And BIG NEWS!!!

        One year ago, Chronic Pain Lifestyle didn't exist.  I'd thought about creating a blog that had a very loose, free and easy, editorial agenda, but didn't know a thing about blogging.  Nothing at all.  I strongly felt that the web already served the community of sick and disabled people with hundreds of medical sites, both informational and through patient forums. But there was a hole, a gap.

    It was the forums where I thought a fresh approach might help people like myself.  I'd been a regular contributor to COFWA, which had provided me with a strong if opinionated support group.  COFWA threw me out, literally tossed me from the membership for asking if any other members had experienced a decrease in sexual activity due to pain.  Apparently there was a rule against the topic of human sexuality.  My post wasn't specific nor was it prurient.  I'm a happily married man with four kids, but struggled to maintain a normal (sorry) physical relationship with the woman I love.

     An acrimonious mud slinging campaign was followed by my being asked not to post again.  I don't think there's anything wrong with that, but felt that I was singled out.  Many people wrote private emails to me offering suggestions.  Others publicly stood-up and asked why this topic was off-the-table when nothing else related to our condition seemed to be. 

     So I created a blog with the idea that any topic or question that might help would be published.  I drew one line:  mean spirited personal attacks against any commenter or writer wouldn't be published. 

     In any case, no one would ever be subjected to "mob" justice.  People would be allowed to post anonymously.  Firebrand attacks simply wouldn't be published.  I wanted to create an "anything that's bothering you relating to your condition" would hit the page.

     If something made you feel good, bad, sad, happy, confused, embarrassed then I consider it germane.  Personal experiences, disappointments and achievements all made it.  Opinions, whether popular or not, were fair game.  Spirituality was welcome, even encouraged as a healthy practice;  lack of spirituality was treated exactly the same way.

     I made wonderful friends.  Anne joined me almost immediately as a co-author continuing to publish her work in a special category, "Anne's Corner".  She's become a great friend and partner in this enterprise. 

      The beautiful pictures that bring life to our posts are the generous gift of Dorothy Gantenbein who gives us the opportunity to use her work.  Please visit her site, www.dorothyphoto.com , you'll be amazed

     Then, Wanda came aboard with her unique world view; I count myself especially graced to have such wonderful people as Anne and Wanda working so hard to make Chronic Pain Lifestyle a special place

     The first week was humbling.  If 8 people stopped in it was a lot.  Compare that now to our regular daily readership of over 100 readers.

     Getting back to the idea of a forum, as a gift from Heaven, I received an email from a woman named Jenny Desmond (Jen D)    at a fantastic forum called CarePlace.

http://www.careplace.com/community/16

      Three things attract me, and I hope you to this lively forum:

1. Numerous open forums on many, many topics, most especially, chronic pain.  I've been peeking at the exchanges from the bushes, and have already joined.  I strongly encourage you to give it a try as well.  We're handicapped on our site by the inability to respond to questions in a timely manner.  No such problem here.
2. Very high quality discussions and numerous responses.  As I mentioned, the board is lively.  I did not recognize many participants since Jenny first contacted me.  Please mention, when you post there, that you were directed from Chronic Pain lifestyle.  If there is enough interest, we'll create a directed link between the pages, so we've got to know when people from here went there.  I think this will create a better Internet experience for all of our readers, AT NO COST.
3. In increased capability to create chat rooms without having to leave the site.  This will allow us to schedule interactive live events, public and private, with ourselves and Doctors, Lawyers Accountants, etc. on topics that are specific to us.  Since we'll have screen names, anonymity is guaranteed.  Feedback on this topic is greatly appreciated, so please let me know.  Several well known authors have already expressed interest in speaking to our group.

     But, the proof will be in the pudding.  Jenny and I are hammering out the final details, but if you want a head start, sign-up and go.  Please keep us in the loop.  Obviously, the greater the number of participants attract more widely known experts.  Hoping this works out, even for one person, I am, Colin.  God Bless.

There is no Drug for "Loss of Funtion", Part II

      Did you figure it out?  After about 25 years of grinding pain from bulging disks, herniated disks, slipped disks (it's all the same) I'd have avoided surgery if at all possible.  For reasons within my control, which was merely gritting my teeth and doing the opposite of what many doc's used to recommend that being bed rest, I ignored pain and made it 25 years without recourse to surgery. My back used to heal on it's own.  Just like a common cold.  HUGE LESSON #1, IF YOU CAN AVOID INVASIVE OR SURGICAL PROCEDURES, DO SO!!

     Think about it, "Well Colin, we can just wait and a day and a little at a time, you'll heal.  In a month, you'll be back in the rodeo, bull-riding.  Right as rain, cowboy."...or..."Well Colin, first we'll stab you multiple times, cut a fillet from your butt, scoop out your disk, if we can get at it, dump-out the bone fragments, borrow some of your hip-bone, graft it all together, wait to see if the bone graft takes, fuse you so tight you may never twist again...oh, almost forgot, if the scars in your spine are too severe, you'll live a lifetime of pain because those nerves will clump together. Can't separate them after that; too dangerous. Law makes me say that stuff; most of the time things work fine, almost as well as leaving it alone."

     Of course, I exaggerate.  I didn't have a choice.  Calcified disk matter was sticking into my spine like a plastic cocktail sword through an olive.  I was falling on my head with increasing frequency, wetting my pants, and wondering just how fast those other cars speeding by me were going until I saw that I had slowed to 20 mph.  Couldn't feel a thing in my legs and feet, which is scary on I-95.  I had to go under the knife.  I still am mystified that after hours of cutting, cracking bones around and stapling me shut, they tossed me ON MY BACK on a hospital mattress.  The surgeon came to visit and asked, "How do you feel?", when I was still high as a monkey from anesthesia and industrial strength pain killers.  C'mon, what patient, in that condition, ever said anything but, "Great!!! I feel like a schoolboy with a piece of pie!"  This changes radically in the next few hours.

     Well, lesson #2 is even simpler.  I'll take any course of action, even if it hurts, to just feel a bit better than I feel now (and will for the rest of my life).  Shoot, that's about another Billion and a half seconds.  When you have chronic pain, often the most useful unit of measuring time is a second.  What's going to happen, anyway.  I'll hurt myself?  I hurt, severly, all the time. 

      Anyone who experiences, or has experienced severe pain will tell you that pain, like chewing gum, comes in a variety of flavors.  Intense or subtle strong and weak and all possible combinations.  Unlike the taste of gum, pain can change from numb and throbbing to the electric hot-foot in, you guessed it, a second.  Thank of the onset of a muscle cramp. 

     Judging by the comments and my emails, I wasn't clear.  I'm not a rash, pain for it's own sake maniac, but I will pay any price for the ordinary pleasure of running again, or breaking-off curve balls to see if I can strike my kid out.

     Wouldn't you?  God bless, Colin

There's no Drug for 'Loss of Function' Part I

        Last Tuesday I hurt myself again, badly.  I push myself beyond the limits that pain receptors fire within my brain, past yellow warning lights, ripping through red lights, finally smashing through the "Bridge Out" road block, in hope to give myself a hearty, healthy cardio-vascular workout.  I measure my performance on a personal "speedometer": my heart rate.  If after 9 minutes on a reclining stationary bike I'm above 140 beats a minute, I gun the last minute in hope that I'll set a new personal best record, perhaps burning 125 calories over the previous ten minutes.  HOORAH!  It hurts like hell.  Know that, but so what, I'll have set a new personal best; I shatter old records but at a high cost: 3 days in bed. 

       This truly idiotic destruction of my previous records doesn't accelerate my recovery.  Just the opposite, it sets me back.  It slows my recovery, robs me of sleep delivering a bill payable in pain.  It slows my walking.  It causes me to lean heavily upon my cane (and breakthrough narcotics) so that I mumble, tumble, wobble, drool, and fall over.  Side effects from the narcotics dampen my memory.  New pain arrives in the form of back spasms, leg cramps, pinched nerves in my neck and constipation of my bowels.  Driving a car, even short walks are impossible in the recovery period.  The pain doc repeatedly warns me against this behavior, but I ignore him.  I've tried to explain that this is not something I do, it's who I am.

       A Gordian knot of trouble.  I'm not a masochist.  I hate pain.  So, why do it?

       My shrink set me straight on this point. I was right, this is who I am.  The key, the solution is for me to accept one simple fact, to unwind the knot with which I've lived my entire life...

• I HATE PAIN BUT WILL ENDURE IT AT ALL LEVELS UNTIL MY BODY REFUSES TO GO ON. I REACH POINTS OF COLLAPSE, ALMOST LIKE SHOCK, WHEN MY BODILY SYSTEMS SHUT DOWN.  BUT I GO THIS FAR IF THERE IS A REWARD IN MY BEHAVIOR FOR ME.  IF THERE IS A NEW PERSONAL "BEST" THAT I WEAR AS IF IT WERE A MEDAL.

• I will pay a price for a reward.  I will, and have, pushed through to physical breakdown if the prize is something I value enough.  I am the rat in a Skinner Box.
• The Pain Scale doesn't work for me.  I mentioned this in an early post where I described a conversation with my pain doctor when I asked him to explain if "10" was dead, or just shocked or knocked into unconsciousness.  He said "10" is the worst pain you've ever felt.  I told him I wasn't awake for that.  The conversation was like a chat between 2 people on mobile phones when both parties are between cells.
• My Psychotherapist explained, citing incident after personal incident from my life, that I don't experience pain as many other people do.  I often experience pain as simply the cost to reach a goal.  If I didn't see a prize, we'd probably view pain similarly.
• Thus the management of my pain today, pain without a prize has only 2 conditions: I have pain, or I don't have pain.
• If you've read this far, here's the pay-off for this 2 part article.  My specific crisis now is not just enduring a high level of chronic pain.  My crisis is different.  It is "Loss of Function"
• My lodestone is that I will, unfortunately, willingly endure all manner of pain to the point of bodily collapse if I believe that I can regain function.  A dangerous game, one worth playing.  One that I could lose.

       My shrink strongly urges me, at this point, to change "games".  He suggests one that offers a real prize instead of an illusory melodrama; functionality, but that which doesn't expose me to the brinkmanship of a high risk physical game.  I've used the word game in a formal sense in this article as it might relate to game theory, particularly tournament game theory in which one loss eliminates a participant from the game.  Perhaps, recovery without self-absorbed faux heroics.  God bless us all, Colin

What Did He Want?

Download Awesome_powerpoint.pps      A post from Kathy...This is a powerpoint presentation and has been scanned for all know viruses.  Please double click to start it.  A Powerpoint presentation will pop-up.  On the menu bar, to the right of the Edit functions, a couple of commands over, you'll find a command, "View".  Click on it then move your mouse to "View as a Slide show".  Click on this.  music will begin and your screen will be a full sized slideshow.  Left mouseclick your way through the ten slides.  At the end you'll see a prompt at the top of the page, "End slide show..."  The author of this piece is unknown to me, but it seems clearly intended for dissemination.  If you are the writer, please drop me a note.  Thanks.

     You won't be disappointed so give it a couple of clicks.  Thank you, Kathy,

     Colin's contact, [email protected]

Pain Pumps and Me Part 4

  Well, we are now into the month of November and I still haven't been able to get my pain pump problems settled. I left off writing last time wanting to see the pain doctor but not being able to get that message past the nurses. On Tuesday Oct. 31st. I went back to the doctor again but it turns out I wasn't to see him but the pump nurse again for another turn down of my flow rate. However this nurse has been working with me and she finally understood my problems. She got me an appointment with the doctor for Thursday November 2nd. It was a work in.

It was scheduled for 10:00 but it was 12:00 before the doctor came in. The night before this meeting I wrote him a letter. It was four pages long. When his regular nurse (not a pump nurse) asked for my symptoms I gave her the page that listed all 19 of them. Then I gave her the whole letter. Finally the doctor comes into the exam room and he doesn't even have my chart with him. He didn't need it. He had read the letter and knew everything that needs to be done to resolve my pain and pump issues. It's complicated and I don't think any other person could ever have the things happen to them that have happened to me. My Mother often told me that if anything could go wrong, it would go wrong for me (medically speaking). She was right. For some reason (God's hand, I think) I started the letter with a brief case history of my back problems. Since I was just taken in as a pump refill patient he only has records pertaining to that.

It turns out that the new pump medication--fentanyl--is going systemic. My thoracic region spinal cord AVM makes the vessels thin and the medication is passing through into my blood stream. Fentanyl is a strong drug that simply does not seem to cause problems when used intrathecal. So, I do have all of those adverse reactions just like when I used the patch form even though I "couldn't be having them" before.

Next comes the fact that I have a lumbar region blockage of long standing. Neither of us considered that a factor since I'd used a pump for over 17 years with no problems.

Fentanyl tends to stay in one spot in the spine whereas dialudid spreads out giving a wider coverage area. (The good doctor explained this to my husband and me.) These three things have acted together and caused me to lose pain control that I'd had for all those years. The fentanyl only helps my pain a little bit because it can't flow with the spinal fluid and "spread out". Since the fentanyl was going up in dosage and the dilaudid is going down I lost even more control. Then the higher the fentanyl dose the worse my adverse reactions have become. For all practical purposes the pump isn't doing much for me now.

The solution? Take the fentanyl out completely and put me back on the same dosages of medications I was on before my old pump malfunctioned. That was supposed to happen this afternoon--November 3rd. It didn't. The pain clinic has a pharmacist who comes there and mixes the pump medications. She comes every day and does them up for three or four days in advance. She didn't come in today. They can't contact her. They do not have a back-up pharmacist. They say it will be at least Tuesday and maybe even longer before they can find a pharmacist somewhere to mix my medications. Did the doctor tell me? No. Did they cause my husband to lose another day of work because they didn't call and tell us the problem before we got there? Yes. Their answer--we will give you gas money. Wow! How about treating me like the patient who has a medication going into my body 24/7 that I'm having really bad reactions to? I told them repeatedly I can't use this medication. I want to see the doctor.

The doctor told me as soon as he walked into the exam room that if he had been aware of the AVM he would not have used fentanyl. Yet later on in the conversation he tells my husband that he would do the same thing all over again. Which is it?

Pain can always get worse. It's a lesson I've learned the hard way. The real question is how much pain can/will the patient tolerate? Not much more for me.

Another pearl of wisdom from the good doctor--he doesn't think my adhesive arachnoiditis is getting worse at all. He thinks the tests were wrong because I'd already lost pain control when they were done. Changing the medications back to what they were before is supposed to take care of everything. When will I get the "change"? I have no idea. How much more can I take of this horrid pain along with these 19 adverse reactions? Not much.

Colin posted about the medical community using this blog for insight into how patients feel and react. Medical people listen up. Patients like to see the doctor, not just a nurse, when we have a new problem. When the pump medication doses are correct, we are just fine with a nurse. When they aren't, we need the doctor not a message relay system. Patients expect prompt attention in an emergency situation. This doctor does not think this is a dire situation for me. It is. I can not continue to live like this. I have no choice because he is the only one who can handle the problem. Since he doesn't think it's a big deal, I'm the one to suffer, not him. Total dispair because this doctor wouldn't see me. Now he won't even listen to my cries for help. I hope he has a nice weekend because I sure won't.

Wanda

For Frustrated Bloggers Only

     If you've written a blog post or article in the past, yet were disappointed with it's readership, go to http://jackbauerdeclassified.typepad.com/plus_ultra/ Instructions are in the most recent post.

     This new blog, Plus Ultra, will find the right place to publish it, you'll pick-up a link, and the readerships your piece deserves.  Your risk is that an article you wrote will continue to gather dust in your archives.

     There is no cost for this service,  Colin

The Chinese Love Beads

     The way I heard it, it goes like this.

     Man living in China has a loving wife.  She passes away, leaving him alone and disconsolate. His grief is so deep that all he can think about is his wife.  He carries her beads around with him everywhere he goes so that he might never, even for a moment forget her.  He begins to think of ending his life, so that at least they may together, rest in peace.  He visits a very holy man who convinces him that his suicide will not reunite him with his wife, but if he travels the land, searching for one house that has never known sorrow, he will be united with his wife.

     The man begins his search at the largest, most beautiful home in his town. At this house he tells his story.

     "I'm sorry my friend, but despite my wealth, this house has known many sorrows".  The home owner tells of his woes, and the depth of his sorrow.  The man with the beads is so moved that he stays with the rich man, helping him to the extent he can, and after a long time the rich homeowner sends the man with the beads on his way, thanking him profusely for his kindness, and generosity.

      The search goes on, from home to cardboard box to home, as the man with the beads searches for the house that has never known sorrow.  He finds that every place he stops knows sorrow, and that he does what he can to help.

     Years pass, with no resolution, but the man loses the beads.  Yet, he continues his search. 

     Finally, when the man is too old to continue his search, he returns to the holy man.  He tells him that not only has he not found the house that knows no sorrow, but he's also lost his beads.

     "And your wife," said the holy man.

     The man paused thinking of the world, and the sorrows that surrounded him.  "I have known love," he said. "I have seen more sorrow than any could stand. As I labored to help the people I met, I thought less and less of what I had lost, and more and more of what did have. After a time, though I lost the beads I felt my wife with me. I've found my wife."

     End.  When I pray I try to remember that expression, "When you pray, move your feet."  What this all means to me is try to put other people ahead of me, and take the actions God might want me to take.

      It's like the Hail Mary they say as a team before every game. One of the university priests was once asked if God would help them win because they prayed, to which the priest replied, "Only if we make our blocks." God Bless.

A great link to a caring group

     I should have mentioned it earlier...COFWA, Circle of Friends with Arachnoiditis, was the first stop for me on the web when I was diagnosed.  The people are friendly, welcoming, and helpful

     The site has many helpful links.  I can't recall any of my posts ever being unanswered. In fact, responses to my comments or questions posted on the site usually generated about 10 responses--sometimes many more.

     Your healthcare providers, family and friends will also find the range of posted information, from medical/technical to personal/anechdotal to be vast.

      The url: http://health.groups.yahoo.com/group/cofwa/.

     I joined and have never been bothered by useless spam. I highly recommend that you check it out, and if you like it, don't worry about joining.