Well, it has been a while since I was last here. I recently went to see my esteemed orthopod (the one who deals with my back issues) and we had the “surgery” talk.  Turns out my thoracic spine is in worse shape than my lumbar, which is not saying much. He became suspicious that all of my symptoms were maybe not coming from my lumbar spine. Well, I am making the commitment to try and stave off surgery through aggressive PT, exercise and losing some pounds. Don’t know quite how long I can go with this level of pain. It has been as bad as it has ever been. And the neuro symptoms are particularly annoying. I could deal with the pain if I didn’t have numbness and weakness in my legs.

It is the same story, no real assurances that surgery will do much more than provide a measure of pain relief and that the nerve decompression may improve my symptoms. I am not so unrealistic that I expect anything close to a cure. Won’t happen.  I am sticking to my usual mantra: Keep moving. Don’t give in to the pain. Rest when you feel like you have to but otherwise keep on truckin’! Gets old!

Anyhow, I have given up (largely) any thought of going ahead with an implanted nerve stimulator. Too much risk for too little possible gain, and it is only a band-aid.  The whole experience I had with it in the 80’s keeps me fairly jaded.

Would appreciate any thoughts, comments, words of wisdom from anyone who has had a decompressive laminectomy.

Keep the faith!

I am now walking about on a revised knee!! So far so good. Pain is diminishing, mobility is improving.

But……..this is only the end of one chapter. I now have some big decisions to make regarding the rest of my body. My back is trashed! I have talked to a pain management specialist about the possibily of placing a nerve stimulator as a way to stave off back surgery, maybe major back surgery.  The nerve stimulator would help control the pain and maybe buy some time. This could involve a laminectomy depending upon the type of lead they choose to place. It could also just be place percutaneously, but the pulse generator has to be surgically implanted. Infection is always a big risk. This is what caused the beginning of many of my problems 20 years ago when I went down this path. I am hesitant to even think about going there again in spite of the fact that the technology has changed a bunch in 20 years.  It was a major trauma then and nearly physically destroyed my ability to walk. I am not sure which way to jump with this but if there is anyone out there  who has had experience with the current technology, please let me know.

My knee pain is retreating almost daily and my hope is that it will soon be at the level it was before the surgery. I am still having some stiffness, particularly when I sit for an extended period of time, but overall the result has been good! No follow-up for three months!!

If I can get my back pain and neuro symptoms under control, life will be much more manageable. It is a daily struggle now with not much change day-to-day.

I have been an absent parent to my blog for some time now. Life takes many twists and turns and sometimes all one can do is hold on for dear life.

Pain has once again become my constant companion (not that it ever really left)  but with a knee replacement that was 11 years into wearing out something had to be done. I had been scheduled to have a revision on 9/11/08 but that was derailed by a raging case of poison ivy/sumac on my legs. So on 9/23 the surgery went forward and I am now recovering nicely.

The only problem is that in the midst of all of this my back has reared it’s ugliness and I finally got up the courage to see my doc who’s specialty is backs. He sent me for an epidural the week before my knee surgery but he feels pretty strongly that back sugery may well be in the offing. Severe stenosis as well as a handful of herniated disks had made it a surgeon’s playground. Only problem is that I am not convinced that long term it will make much difference. The sciatica is so bad that some days I don’t know if I can cope but I keep pushing on as I have done for many years.

The one thing  we did revisit is a trial of a spinal nerve stimulator to try and lessen the pain. I would very much like to hear from anyone out there who has had any experience, good or bad with one of these. I have some experience of my own but it was more than 20 years ago and the technology has changed significantly since then.

I have neglected this blog for some time now mostly just taking a break and taking stock in a lot of things in my life. The physical pain is unchanged. But physical pain is only one part of this life we lead as humans. Emotional pain is a huge component and maybe more significant than any physical pain we feel. Much of it is unavoidable. Much of it is part of how we lead our lives. And those around us share in much of the pain we perceive, physical or emotional. And there are times when we are mired deep in the grip of some sort of pain, physical or emotional and no one sees it. When we keep our feelings close to our chest. Other times, it is out there on our sleeves, for the whole world to see. One way is no better or worse than the other, just different.  Different for me, different for those around me. And I know that from time to time, the emotional pain overwhelms any physical pain imaginable .
Anyone who has known this kind of psychic pain knows that it is the worst. And no amount of any drug can ease it.  It cuts to the core, pulls us into the depths of depression!! And climbing out can be a very slippery slope indeed.  Physical pain can be tempered with drugs, even OTC drugs. Psychic pain does not respond to Advil or Tylenol.  Never has, never will.

As a chronic pain sufferer, I often wonder if something like 100% of those in the same boat suffer with emotional pain and distress. It seems quite universal, yet some times you meet someone who seems so unaffected by the ravages of pain. Someone who embraces it with such grace and grit that it hardly seems an annoyance.  How can that be? How can one person wade through the dregs of depression and the one next to them be floating, flying??  The proverbial $64, 000 question.
Some days I believe that it is all for show in those who eternally have a happy face. That it is what they want people to see, not what is really on the inside. That giving in to the pain, allowing themselves to feel the lows of depression just might be too much to bear.

I don’t know how many blogs I have read with posts about chronic pain. Many. But there is this common thought in many that the experience of feeling pain can and is tempered by the situation in which we find ourselves.  If we are in a good place, happy, content, then somehow the level of pain can be diminished somewhat. If we are in a place where our lives are driven by stress, then our experience is much more intense.  I know this is very much a generalization. But I have found that for me anyhow, it is true.  Friends, family, loved ones all help keep us on an even keel. But one thing is also apparent. That there are times when nothing helps, nothing tempers the level of pain and no amount of peace or solitude or contentment will reduce the level of pain. Pure and simple.

I read this somewhere the other day and had to comment. What a ubiquitous statement this is.  Every day, millions of Americans (not to say that other cultures don’t share our problem) are written prescriptions for narcotics from everything from tooth aches to cancer pain.  And every prescription comes with the above warning, that this substance has the potential for abuse.  But how many people do you think realize the true significance of this warning? If you are doled-out a few pills to get you through an acute injury, it is likely pretty small. If this condition turns into something more, becomes chronic, then that is truly a different story.
The human condition is that we seek anything we can find to alleviate pain. Pain is an unnatural state in our bodies. It is our body’s way of telling us that something is amiss. That something is broken, stressed, damaged in some way. And the normal response is for us to look for some way to fix whatever is causing the pain. But what if there is no way to fix it? What if something simple becomes something complex and there is nothing to be done but control the pain? Then what?? Do we give in to the promise that narcotics are our friend? That their use will help us to cope with whatever is bothering us? Do we give in to the potential for escalating doses? As time passes, more is needed to achieve the same result?  And when do we say “when”?? After we have overdosed the first time? The second?

There is a story that was related to me by a physician in MO who was sent to a small town in rural Missouri to provide health care in the absence of the regular physician.  He took up residence in this small town and began seeing patients for a variety of ailments, some acute, but most of them chronic. And the procession of patients through his office had an eerily similar theme. Narcotics. Not just any narcotics but Oxycontin, Duragesic, big gun narcotics and for conditions that in many ways did not warrant the use of such powerful drugs.  He began to question the patients and the prescriptions. His hesitance was greeted with anger, even threats if he didn’t continue to prescribe these drugs.  In the end, he was able to reduce the load of narcotics flowing from his office by a huge percentage. His patients were safer, healthier, and managed their pain with methods that didn’t include powerful narcotics when lesser means were an option.

Narcotics have their place in the treatment of chronic pain. Just not as a first line of defense.  I have been there, been on them to the tenth-power. Have nearly died because of them. And finally had the good sense, the insight, the fear of a life devoid of emotion, to finally quit them for good. And the potential is there to get back to a place where they become a part of my life, at least on a temporary basis. The difference now is that I hate the feeling of being out of control of my mind and body. Of being snowed and dull and without emotion.  Pain is real. Pain is part of being human. And it does take it’s toll on our bodies as well. But at least I can make the choice, that’s more than I can say for some of the people I have encountered.  The use of narcotics has so taken over their lives that using them is no longer a choice but a necessity. The pervasive drive in their lives is to make sure they don’t run out!! The next prescription, the next refill, the next doctor who will enable their behavior.  And I hate sanctimonious people. Reformed addicts and alcoholics can be very much that way. So If I seem harsh or judgmental, it is not my intention. It is simple concern for my fellow man that drive me to write this. To offer a perspective, to offer my own story, one that is fraught with mistakes, some of which could have cost me my life.  And to offer, you the reader, the opportunity to look at your options and know that there is life after narcotics. There is life with pain, but it is life that looks so much brighter, so much more hopeful than anything you can imagine while in the grip of drugs.

And believe me, there are days when I could crawl back into a bottle of pills. When I could give in to the pain once again. But it is but for the grace of god and sheer force of will that keeps me safe from this path. And it is love and hope and the promise of a life fulfilled that keeps me safe, today, tomorrow, and hopefully for a very long time.

I keep coming back to this whole idea of sharing how I feel with those around me. I have started to make a mental note whenever someone tells me how they are feeling. And this note is intended to register whether or not I feel like I am getting an honest answer!! Guess what?? Not very often do I truly feel like there is a genuine attempt to be “real” about pain.
We all try and ” protect” those we love from our pain. We try and keep how bad we are really feeling bottled-up inside us in a futile attempt to put on a good face. To appear as though nothing is wrong and in many ways, I guess appear to be superhuman! But we aren’t fooling anyone. You can see when someone is hurting, see it in their eyes, hear it in their voice, in the often weary tone that accompanies a day of feeling miserable.

But who are we really fooling? Who are we protecting when we keep things to ourselves?? Is it our own sensibilities that need adjusting? Do we need to in the words of my generation, “let it all hang out”? I don’t know that I can answer that. Dealing with and sharing how we feel is in intensely personal thing. And when you open yourself up completely, whether it is about your pain or something else, then you are vulnerable, open to the world of criticism, advise, fixers, etc who descend upon us when we hurt.

I was thinking recently that for people who deal with chronic pain on a daily basis, there comes a time when pain can completely take over your life. When nothing you do, no drug imaginable, can relieve the discomfort. And how do you cope with that? How do you reconcile being in so much pain that nothing else really matters??

It is hard for someone who has never been down this road to imagine what it’s like to be overwhelmed by pain. Feeling like there is nothing that will relieve it, nothing on earth to make it better, even for 5 minutes! And if you were to describe this pain the only way I can think of to adequately do is is with a primal scream!! I read someone’s blog recently where they were talking about pain assessment.  And I am aware that it is an integral part of the exam to assess the level of pain using the traditional scale and then descriptors.  But sometimes it is hard to quantify pain. Particularly when it comes from multiple sites at once.   I have had

days where I wasn’t sure if I was going to make it to the next day or not.  The level of discomfort was so great that I wasn’t sure which way was up.  But I have a secret weapon. I have a way of dealing with severe pain that is going to shock you. Maybe even appall you!! That weapon is laughter. Find someone who is funny as hell, read something hilarious, allow yourself to laugh at a goofy movie.  I guarantee that if you are laughing, I mean really laughing, you will find it hard to obsess about your pain, no matter how bad it is.

So now you are saying that this approach doesn’t work for you. Ok, well, then what’s next? Guided imagery, relaxation techniques, biofeedback. All healthy adversaries in the war on pain. Anyone who has ever ventured into a Multidisciplinary Pain Management program  knows that all of these are a part of the curriculum.  And on a given day they help, maybe not totally alleviate the pain, but help.

But on those days when you are circling the bowl, when nothing helps. When life feels like it is not worth living, then there is but one other choice. Chemistry!  Better living through chemistry, right? Or pharmaceuticals, right?? Even though I am and have been drug free for a while, there are still days when narcotics are the only way to find a place of comfort. There are days when if I had them in the house I would so take just one or two in order to sleep, in order to function.  But I don’t want to start! And I don’t want to sound sanctimonious either.  Just a statement of how I feel.

I would very much love to hear from you, dear readers, about what you do to cope, day to day, and when things really get out of control. Where do you go, what do you do?  Look forward to hearing from you!!!

Some days I feel like an amoeba. Squirming in a petri dish, waiting for some nerd scientist to slice me open and see what makes me tick. Well, that would be a nice trick given the size of an amoeba, but you get my point! Or maybe a paramecium. I did a science project in middle school on paramecium. Harvested a bunch from a local pond and studied them under a microscope. Interesting creatures, they are. One-celled, but complex. Anyhow, I digressed a bit!

I have been down a path where supposed healers have poked and prodded me in an attempt to “fix” me. And the more they poke, and the more they prod, the worse I feel. The more holes they punch in me, the more cuts they make, the worse things get. And all I can do is squirm and wriggle and say “no more”. And I have. And I do. And I will continue to do this. Because age has taught me something. That is that much of what is wrong with our bodies is our own doing. Nutrition, obesity, lack of exercise, smoking, alcohol, drugs. All wonderful things that help our bodies along to it’s ultimate demise. And no matter how many doctors, hospitals, therapists we see, the cure is right there within us. The cure is often times in our own head. Being able to overcome what drives the behaviors that are slowing doing us in. And human nature is a funny thing. At some point, many of us give in to the fact that we are doing bad things to our bodies. We freely admit it! Hell, I have!!! I know the things that can make my life better, more productive. Exercise, weight loss, lifestyle changes. Simple stuff. But knowing and being able to get over the psychological hurdles is another thing. I was reading about a school in NC, one of several that were designed to help teenagers with morbid obesity. It is an on-site, intensive weight loss program, complete with lifestyle changes. The cost per student, and the school in NC is limited to 50 students, is $6250. That’s per month!! More than it costs to go to school at Harvard!! And the success is phenomenal. But so are the failures. One young man who is now in college, went into the program in 2006 at 485 lbs. He lost 197 lbs while on campus and another 30 when he got home. He then proceeded to balloon his weight to 565 lbs, which is where he is today. And he is facing Lap-Band surgery to try and help his problem. But the surgery, without the necessary dietary changes is a prescription for disaster. And this young man’s father took $40, 000 in loans for him to go to school for 8 months. He has now lost his job and has no idea how he is going to repay the money. And in the article it talks about how this young man’s weight problem was a huge source of conflict between he and his father. Which I am sure went a long way toward making it more difficult for this young man.

But whether it is weight loss or any other lifestyle issue, the important thing is that we never lose sight of the person inside. Never judge harshly until we have walked a mile in their shoes. It’s easy to throw rocks when you are the only one with rocks. But when they are being hurled back at you, it’s not nearly so much fun!

When I am feeling like the writhing amoeba, like another science experiment gone wrong, I only have to realize that what happens to me is my choice. And in the words from the third installment of “Indiana Jones”,
“Choose wisely”. Something that we all should consider.

I was contemplating yesterday, which by the way was an awful day, when to give in and see the doc. I am one of these people who goes to see my physician as infrequently as possible. I have found that it is healthier that way. If you stay away, they can’t come up with more hokey shit to do to you that will largely not help anyhow!

But last summer I had to. I had to see my orthopod. I was having incredible pain in my low back and legs with significant neurological symptoms in my legs. In fact, my left leg, which is the only one which bends, was so weak that I found it very difficult to negotiate stairs or even step up on more than a short curb. After a couple of MRI’s I was told that I my back from L1-L5 was largely fucked! Herniated disks, stenosis, bone spurs, the whole enchilada!! Along with that was major nerve impingement. A course of conservative treatment went largely without improvement so the answer was surgery. So I went for a second opinion. And the answer was largely the same. So I decided that i was not going to give in to that. Since I was acutely aware that back surgery is a 50-50 proposition at best. And so I went home with a new resolve to make it better, to make me better! I started lifting weights, again, after a fairly long hiatus. I strengthened my core so as to support my back more efficiently. And gradually, over a period of weeks and months, I did improve. I did find that the symptoms abated, not totally, but significantly. Maybe through sheer force of will. Maybe because I realized that there was something more important in my life than pain and more surgery and more down time. That living had become a priority again to me, not just existing. And I managed to sustain for a long time. Months! And then the past few days the symptoms began to creep back in. Pain I can deal with, but the numbness and radiating in my legs and even my feet is tough. Yesterday was excruciating. It took me until mid-afternoon to feel “functional” even though I kept moving all day. It took that long for me to feel at all comfortable, enough to be able to sit and even lie down for a bit. And today it was some better. But not enough.
SOOOOO, I beg the question: When is enough, enough? When is it time to call the doc and say, “Help!!”? I am not sure I am there yet, but almost. We all have our “governor” for how much pain we can tolerate and which symptoms raise a red flag. I know the drill all too well. I know the drill for different body systems, which is even more disturbing. When do you go to the E.R. with a bowel obstruction? When do you do the same when dealing with addiction and withdrawal? And when do you say “enough” when it comes to whatever the issue is?? It is different for each of us. I guess for me, the threat of more surgery is a huge deterrent. I find that the idea of going through more surgery and rehab and the whole thing so distasteful, that I will avoid it at all cost. But even I have my limits. Even I know, when to say when. And so should you. And tomorrow might be that day. But………………………………………………………………….I know I can get through this. I know that once again I can beat the odds and keep my body whole and avoid the knife once again. I have to. I have much too much to live for!