They don’t diagnose chronic pain

When I got the news that I had cancer, the one positive out of it was: I got an actual diagnosis!

That means there was something to treat and the VA’s Cancer team did a professional job in eradicating it. They also eradicated my singing voice, which powered my comeback from the first dozen years when the pain crushed me into a shell of my former self. I’m mad that no one cared about that. I must be appreciative that I’m not going to choke and die from the cancer as my friend JB did a few years ago. JB did not go for treatment until it was too late. He was a great guy.

I remember when the term “chronic pain” came into my vocabulary. It was only a few month in. I was driving, thinking about this damned pain and what to do and I thought to myself: “This is chronic pain.” That’s not a diagnosis. I began a, so far, 27 year search for answers. Found some, still seeking others. Try telling a doctor you need treatment for ‘chronic pain.’ These days, many will throw you out, assuming, falsely, that you’re a drug seeker. It’s rough to get treament for an undiagnosed malady.

So, by virtue of the cancer treatment, I also learned that gabapentin at a high dose is effective against one facet, one saturation facet of my pain. It just suddenly erased it and that gives me more ‘upright’ time. It makes being upright much more tolerable during the ins and outs of days. That’s what’s so frustrating about the current pain. It comes from my lack of exercise, which I keep wanting to improve but my feeding tube keeps me from really trying. I want that out, and then I will really quadruple my efforts to rebuild my lacking strength.

If feels like this shooting pain in shoulder is a result of being able to be upright so much. Like it is a result of the accumulated extra stress, yet I need to do, perform, be upright to have a normal life again. The pain is in the area that I think is affected by spinal stenosis, but no one has ever explained that diagnosis to me, so that’s just a guess.

The cancer team did a good job, but I have criticisms. I wish I could air those criticisms, but everyone is always like: Oh my cancer team saved my life (true) so I must only say good things about them (not true). To me the cancer team was lacking in that: They asked me about complicating issues, but only two. Diabetes or Heart Problems. If you said no to that, they were done. In my case the chronic pain was a factor and my career as a professional singer was a factor – two factors that were ignored. I think they could have done better if they had really give that some consideration.

After the fact, I’ve read two articles that kinda upset me. One was a fella who had radiation but performed a salt water and baking soda gargle frequently. I should have done that. Someone mentioned it once, but it didn’t stick. The other was a fella who, in order to preserve as much vocal function, was treated with laser surgery in Cincinnati. His outcome, as reported, was better than mine so far.

I think we should expect more from our medical system and not get all whipped up in how saved your life. That’s their job.

A Struggle for Self-Confidence

I have a unique perspective. I’m sure others have had experience like mine, but not many. Other constant pain sufferers will relate to this piece.

A pain syndrome that doesn’t relent can be caused by many things, but each person’s experience is as unique as a fingerprint. That makes it hard to gather a bunch of us up in the same basket to define and treat. Not only are the chronic pain sufferers back-seated in their lives, but the people around them, at least in my experience, mostly don’t want to hear about it. There’s nothing they can do about it, so, it’s frustrating to them to hear about it. I understand. If you look up ‘chronic pain,’ you’ll find treatments like ‘breathing.’ and yoga, both helpful, but in the low single digits of percentile.

I have, in twenty-seven years, accomplished some level of recovery. I am still in pain, but I managed to overcome one chunk of it with a little-known procedure 15 years ago. I discovered unknown things about it 3 years ago that have helped, and a month ago, I achieved success in identifiying a prescripton medicine, non-opioid, that drastically had improved my condition. I am still adjusting to that wonderful thing. It took a bout with cancer to learn this.

Had this medication been prescribed 15 years ago, my story today would be different.

Even after relief of the single, worst symptom, I was still in significant pain, and my self-confidence had been destroyed. I didnt’ know it until some years later when it became clear to me. I can remember more freshly, in more detail, how this bleeding of self-confidence happened, so perhaps writing about it with be cathargic. Perhaps writing about it will give someone else a little knowledge they can use to preserve their own.

A persons self-confidence can be boosted and built, it can be bashed and destroyed. I was brimming with self-confidence for all of the 38 years before my life was changed by two accidents, a bad fall, and then a subsequent, seemingly-simple accident. I just always expected it to be there. It was well built, starting with my parents. My mother and father both contributed to my self-confidence. My Mom signed us up for things, my Dad took me to play golf. I play music thanks to Both. She’s not a musician, he was, both were a big supporters of their kids efforts at anything. I almost made Eagle scout (that’s another story).

All the way through school, doing chorus and broadway musicals where I played leading roles, superior ratings at vocal and choral competitions. Joining the Navy, sailing around half the world, Sailor of the quarter once. I put together a dive club, got a bunch of guys certified and on the next cruise, I put together a band that would play a number of foriegn cities. Everywhere I went, I had confidence that I could pull off just about anything into the above-average cloud. I excelled in that, and in my career as a softeware developer.

After the severe disability began, my focus became survival.

Nobody could see the intense level of the pain No one could see the particulars of the condition. I tried to describe it so they could understand, but the reactions I got we’re unhelpful. Folks just really didn’t want to hear about it. They didnt’ say so. They’d listen and then go on to whatever they were doing. This wasn’t intentional, they just couldnt offer anything and, I guess no one realized how a person in long-term chronic pain sometimes just wants someone to listen. Especially when the doctors don’t. I hated talking about it, but it comes out.

So, the first three years and three months, i didn’t sleep a full night. It wasn’t until a doctor my wife worked for, based on her credibility since they couldn’t find anything on images, started prescribing opioids. I could finally sleep for 6 hours. My self-confidence had been bashed by then to some level, but I didn’t have a clue.

The next nine years, opioid therapy was what kept me able to overcome the pain to enjoy half a life. I was and am, generally, an upbeat person from the moment I wake up. Still, the remaining pain was a struggle through almost every activity. It made intense activity really difficult, and sometimes you need to maitain intense activity. I would sometimes get mad and slam doors. Not being mad at anybody, just mad at such pain. That wasn’t good for my marriage

Damage to relationships

During that time, I really reached out to my wife for confidence. That really isn’t what she does. She faked it for awhile. She tried hard, for awhile. Over years, I became less and less self confident, and I can remember reaching a point where I was following her around, like a puppy, sometimes, but being ignored. Then there was Roger who befriended her, that was really difficult. She would laugh and drink and party with Roger, and not talk to me. That was really damaging when I look back.

I remember on a trip to see her daughter in Ohio just feeling like she hated me. Like I was following her around hoping for a nice word. One day she would cut me down, the next day feel a little bad about it and treat me nice, and that was a pattern for years she probably wouldn’t acknowldge. She might not have seen it. That was my perspective. She likely won’t read this.

That period included a couple melt-downs on my part, one publicly at a big party. It was humiliating. It’s still humiliating to think about. I had no control. I felt like a 1 inch tall man. Tiny. All I could think about was how to get back in her good graces. I didn’t think anyone would ever do anyting directly about my pain and the source of it. For years, i just accepted this as my life.

First Relief

In 2006, after 12 years and 7 weeks of pain so intense it robbed sleep, only covered up by morphine, I experienced lasting relief. The worst pain, the never-ending pain that I called “The Biker’s Boot” was lifted off of me, so far, 15 years, never to return. I still believe it could so I’m careful not to fall again, especially from a 2nd floor. That was accomplished by the very physical process of NeuroCranial Restrucuting over 4 days in Miami. There are other posts about it.

Before that, I had laid on the couch for 2 years, watching the Iraq war to distract me from the pain. I didn’t know that being flat also reduced my pain, because there were two sources of pain interacting. It would be another 12 years before I understood that and why. During that time, my family continued their lives around me, but I did’t participate much. The first ten years of stuggling to work and be normal against the pain led to that 2-year period I call ‘the collapse.’ It happened becuase I just couldn’t hold my head up to work anymore. For those two years I just avoided the pain.

I finally convinced my doctor to up my dose of morphine. I suddenly sprang back up from the couch and told everybody ‘I’m back,’ but there wasn’t much of me left. I was even tinier. I was still in a lot of pain that forced me to lie down. I was a wallflower now. If I went anywhere with anyone I would just sit there and not even join the conversation. I was just beat down. No one cold see the pain. No one could see how much it had been relieved. No one understood, including me, how much work remained to attain any kind of normal life again. I need 12 years to recover.

Recovering, at least partially

I have written about this journey in many places of this log, but not about my perspective on self-confidence, I still retained some in the areas of singing and computer programming, thought the programming had been shut off for years and I could no longer do it, I still felt that I was a programmer. I knew I was a singer. I had self-confidence in that. So, my son and I started attending a regular Wednesday night open mic at the close by Mandalay Grill.

I had been essentially de-socialized by those two years on the couch, and the ten years of pain preceeding it. When I played the open mic, the crowd reaction was so empowering to me. No one can understand that. No one could see the level to which I’d been repressed, but it didn’t matter. I felt like a normal person there, especially after playing and soaking in that energy. Over four years, I built enough confidence to offer myself for paid gigs. Then followed a fairly good ten year career as a local starving musicain, playing covers. I was picked up and raised up by the local music community and my musical self-confidence is still pretty good.

It was in music that i first recognized how trepedatious a self-confidence issue can be.

I can’t remember what particular gig it was, but there was a gig I prepared for and anticipated, Something happened in that I was cancelled or it was cancelled. I just dont’ remember. What I do remember about the incident was that I pumped my self-confidence up for this gig, and when it didn’t happen, I felt the self-confidence crash and re-felt how I had felt in those melt-downs. It really taught me that my new level of self-confidence was a fraction of that i carried before the accident, and it was fragile. I spend these years of pain “faking it until making it.” I still had a couple melt-downs to go.

Those are my two montra’s : “fake it til you make it.” and “rise like the phoenix.”

A Big Improvement, hopes for rebuilding

As you know if you’ve read any of my recent posts. A presecription medicine, gabapentin, at a higher than usual level has just almost eliminated the nerve pain portion of my pain syndrome giving me a lot more upright time. I still suffer from CSF Leak symptoms, but they are more manageable with knowledge. I have been recovering for a month from the pain levels i carried for the last 27 years. I dont’ feel normal, but I feel ‘almost normal’ which is a pretty nice place to be. It’s ironic that treatment for cancer in the larynx opened my eyes to the level of pain control given by 9 gabapentin pills a day. It’s wonderful and I’m still adusting. I have new hope.

There has been so much damage in my life as a result of 27 years of pain that I can’t even see how to recover, all I can do is take one step at a time. Over the past two years, I’ve regained a lot of up-to-date programming capability even as my music has waned due to the pandemic, and then cancer, so I am still fighting. I hope to change the direction of my ship in 2022. I booked a gig for February 18th, I still have to recover and strengthen my voice, which is altered.

The particulars of my pain, very specific, are still relatively unknown to any other person. They all have their own version of the story, but I doubt it matches mine.

If someone in your life suffers from a chronic issue, pain or whatever, please realize that youthful self-confidence is at risk. Don’t blame the patient. Listen. A person in constant pain needs someone to listen and understand their symptoms. I would love it if someone understood my specifics enough to cite them back to me.

That’s not gonna happen, but ‘que sera.’ I hope this piece helps someone.

To Sidney, with Respect.

Today, I want to write of my respect for Sidney Poitier who just passed away. A consequential actor who connects us to the deeper past. More than just an actor, Sidney carried impressions of black people into the white world of the day. He commanded respect like the great civil rights giants of the day such as Martin Luther King. Sidney was criticized by some black folks for crossing that line, but he was the real thing and the respect he was given was deserved. He made a lasting impression on me from an early age.

These timely thoughts came to me. They are pretty deep. It’s worth sharing for it’s a bit outside the experience of younger folks. This thought reflects on how a childs impressions of the world are formed. Everyone’s path to various realizations is different. Born in the 1950;s, I was living in the segregated south. I was unaware.

If I think back from the outside to my youngest days, those days of coming aware that there is a world around you in the years three, four, five. I remember when I first saw a black person. I was riding in the rambler wagon, in the back seat, and noticed a person of color as we drove past some warehouses. I can picture it. I can’t remember with specificity what the person looked like or anything else other than it happened and really caught my attention. I probably stared.

I remember the protests near my elementary school when bussing was ordered and some white people went on strike and protested. I didn’t really understand what it was all about or why I had to be driven to school instead of taking the bus. I still have the visual in my mind.

Around that same time, I became aware of Sidney Poitier in the movies and Nat King Cole in my Dad’s album collection. I refect that they are the two black individuals that I first became aware of. I always held them in great respect. In those days the term ‘colored’ was widely in use, as was the description of those who openly dissed black people as ‘prejudiced.’ Unfortunately, the ‘n-word’ was much more commonly used in the white world than it is today, though it certainly still used as an insult too much, although only by a certain group of white people, newly named Karen’s, much to the chagrin of some very lovely people named Karen.

I didn’t realize it but in my earliest years, we all lived in this big bubble of segregation, so, like we had it better than them, so we can’t let them in. Cruel. My mother told me a story of having to turn a black man away who was seeking a hotel room, but couldn’t find a Clearwater, Florida hotel he would be allowed to stay in. She always told me how that wasn’t right. She resented having to do it. It stuck with her. It stuck with me.

I was glad to see segregation come down. I was glad to enjoy and be part of racial freedoms growth in the 70’s. I was glad to see the term ‘colored’ give way to the prideful and meanful reference as ‘black.’ I felt the college preference program known as affirmative action was the least we could do. I still do. I knew there was still prejudices, but I thought they were pretty well sidelined. I didn’t realize that they were festering, until the last few years.

I know a lot of white people feel the way I do. We are either equal or we’re not. In many ways, people of color can’t function as equals because of systematic barriers and prejudice. It makes sense to enact programs to defuse that. The right will make the argument that equal means equal in that everybody should stay where they’re at. I disagree. Find some empathy.

In the past few years, I have learned that my namesake, my great-grandfather had a small role in launching a lawsuit that made history where Henrietta Wood succesfully sued her slaver after the Civil War. This is described in the book “Sweet Taste of Liberty.” which, incidentally won the 2020 Pulitzer Prize in history. I’m glad that we are on the same side.

I’ll close by sharing this video of Sting and Shaggy. Such a cool jam. In my opinion, America has never been as great as She can be. This idea of the separation of the races is so dumb, there’s just no way that we could ever be great without our diversity. This rant in honor of Sidney.

10,000 Days.

January 6th, 2022 is my 10,000th day of chronic constant pain. When you go to a doctor for pain, they usually give you a diagnosis. I’m what happens if they don’t.

But, for a very positive attitude and gritty drive to overcome, i dont’ know where i’d be.

I don’t like the words “chronic pain”as a description. It’s not a diagnosis. A light google search for that returns instructions on how to breathe better, etc and the description that it’s former pain that your brain is stuck on. Breathing can definately be helpful, but it doesn’t solve the problem. I call it constant pain rather than chronic. I have come to understand my symptoms much better, but it took 24 years (8,760 days) to find key information about CSF leaks which I feel is certainly part of the syndrome. But more on that many days below. I call my pain constant pain, as it is generated by damage from a very bad, 1 storey fall. It is not imagination. It’s not psychosomatic. Real things matter to it.

I’m not a complainer, I’m a grateful person and I don’t wallow (much) in the muck of it all. I always try to make progress in a positive direction. It is a drag on operating like a normal person, let’s admit that. And it has been for 10,000 days nonstop. I have discovered things that helped and overcome challenges, but it’s still a bitch!! Anyway, just for the record:

It is 10,000 days from the start date (8/22/94) to this date (1/6/2022), inclusive.

Or 27 years, 4 months, 16 days including the end date.

Or 328 months, 16 days including the end date.

Alternative time units

10,000 days can be converted to one of these units:

• 864,000,000 seconds
• 14,400,000 minutes
• 240,000 hours
• 10,000 days
• 1428 weeks and 4 days
• 2739.73% of a common year (365 days)

If I rolled back 10,000 more days, I’d be around 11 years old.

So, to observe this unbelievable event: here’s a short accounting by the count of days. This is long and barely scratches the surface. Knowing others that suffer like I do, I want to put my story ‘out there.’ I will say that I am in considerably less pain now than I was back on day 1. I write this from a place of being thankful for those that have supported me amidst this struggle. It’s an invisible thing, so this is about making it visible.

Before day one, I was healthy, energetic, and not in any pain. I was successful as a software developer and a father. I owned a house. I had 4 weeks a year paid vacation, tons of sick leave since I never called in sick. I traveled the country as a consultant and application software developer and was a go-to guy for dozens of programmers in my company. I had won a big national award from CompuServe when they were the biggest kid on the online block. Like before in my life, in school, in the Navy and now in my career, I pretty much excelled or did well at whatever I took on.

Then I fell through a ceiling, one story head first, bashing the rear of my head on a rafter before folding, and dropping through head first

Two rapid-fire concussions and a separated shoulder. At the ER, they treated the shoulder and pretty much ignored the head injuries since, well, they weren’t obvious. TBI was not a big topic until the wars and football injuries started generating coveage. I recovered well, so I thought. The brain injury had already shown itself, negatively, but I didn’t see it or even think about it.

A year and a half later, I built this inflatable raft, and though it had a motor, the motor wouldn’t start one day, so I decided to go row for hours. I did the same again the next day. The weather was beautiful and I was rowing all around Island Estates and Clearwater Bay.

That generated a severe stress injury, that acted upon the structure of my head and neck, I beleive, due to the previous injury, leaving me invisibly in this horrible pain, focused in my neck, but I later learned, generated from within the skull.

That was the mistake the seeded the chronic pain. Essentially, while I slept, bones in my head and neck got locked out of place in ways that still remain undiagnosed. That Monday morning, I awoke and the first move to get out of bed brought shocking pains. Eventually, I could get up but many movements and postures seemed to generate sparks of pain every few seconds. Thus began day 1. I uttered ouches from every movement it seemed, also my neck felt pushed physically out of line, a symptom I began to call ‘the biker’s boot.’

Days 1 through 3 – Almost couldn’t move. Intense nerve pain. I had to go back to work so after a few days off, I struggled back. I had no idea that I was at the beginning of a lifelong struggle. I put on a smile and went back to work, but the ouches came with me.

Day 4 through 571 (appx) – Continued to work, but using sick days a few hours here and a few hours there, trying to find answers from doctors without success. They loved my insurance coverage. Doctors should have to have some measure of expected success, even if a person is expected to die. I did not have good experiences with the trigger point injections, facet block injections. I had test, treat, repeat with no improvement, but lots of insurane billing.

People did not like hearing me ‘ouch’ as went about my work. They didn’t realize that I sucked up a lot more than I uttered. A few employees were very supportive, including my manager. She really was great. The CEO was not. Day in day out, no sleep, working in an exhausted state, trying to pretend to be normal. I still miss that job. After making a splash there I just faded away.

Day 572 through 755 – Insurance covered Short Term Disability. I really focused on trying to find medical answers. Found instead, that they really loved my insurance but didn’t care if they actually helped me or not. Total failure of the medical system. I have a old page with 11 diagnosis on it. All but one are wrong, some would be impossible, like “Post Laminectomy Syndrome” when I’d never had a laminectomy. That really epitomizes most of my search for relief.

Day 756 through 1301– Realizing that, without a diagnosis, I’d never get Long Term Disability that I’d paid for and deserved (as much as I hated it). The commercial medical system didn’t recognize their failure in me, but I had no answers. So I looked for work that I could handle in my condition. I could not perform to the expectations of my best job ever. I did sue the insurance company and did receive a pittance which the very good lawyer took like 40% of. No one understood my pain, but everyone didn’t want to hear about it anymore.

I found a job that pain squat, but it was a software development job and in exchange for working for a pittance, they put up with my pain, grudgingly. I wrote a great system for them. I’m really proud of it. I took twice as long as it should have, that was an area of friction, but I wrote it. When I saw them they showed me a single piece of paper on which they’d drawn a screen layout, and asked if I could write it. I said I could, and I did. From scratch, I created a day-trading system that managed stock quotes and trading with the NASDAQ stock exchange. The software became successful, they started getting investors, my salary went up. Then they wanted me to basically operate like I didn’t have chronic pain, the pain had become an issue. I couldn’t help the pain so we had a huge falling out. Luckily, I had pushed for stock certificates they’d promised when we started, now that investment was coming in, so the gave me that before the falling out and I was able to sell it back to have a little cash to live on, for a short time. what to do now?

Day 1302 through Day 1972 – I had learned from other chronic pain sufferers online that opioids were helpful for them. I had not considered it, but, after 3 years of not sleeping, I was ready to try. I suffered humiliations in my efforts to find good pain control so I could sleep and work. Finally, a doctor my wife had worked for, a cancer doctor saw me and, based on her credibility, he took me on and prescribed opioids. I still remember that first night of 6 hours of sleep as an ultimate pleasure. The next few days, I slowly recovered from that level of exhaustion. Ultimately I scored a great subcontractor job at the Home Shopping Network. It was after the doctor increased my dosage to a point where I could work there for, like 22 hours a week. I still was in intense pain but it was padded. The details of surviving this period are many, too many for here

Day 1973 through day 2,577: A really tough period. I came to the VA when the option was offered, hoping for answers. Instead, after pulling me off opiods and back into worse pain, the resumed the opioid therapy, however, they reduced my dosage by 1/3 and I couldn’t handle the activities of life at the level. I lost the HSN job in a very difficult way and ended up with no income again. I was in more pain.

I next found a job I could work online for a guy in Memphis who had a backup software company. His software was terrible and I volunteered to help fix it, it was in VB6 which I knew well. This is for so little money but the promise of building something. I worked in a lazy boy chair because my condition forced me from upright long before I realized what that meant. The details of how I worked in this condition are a story of struggle I can’t detail here. I will say that I did greatly improve his software and we started making sales and my income grew, for a few months, then September 11, 2001 happened. that was on day 2,577. Business died and stayed dead, back to poverty. September 11th made me feel like the nation joined me in chronic pain. I wouldn’t wish it on anyone.

Day 2,576 through Day 3,695: I continued to work for him, but even that environment became toxic as I became the support guy and programmer after the support guy left. The problem with that scenario is if you have a bug and everybody is calling about it. You tell them how to get around it but never get the chance to go through the code and actually fix it. I was in terrible pain, It became harder and harder and on approximately day 3,695 I gave up, quit, and lay on the couch mostly for the next 2 years.

Day 3,696 through Day 4,303: I call this period “The Collapse.” I could not function like normal people. The dose of medication was not enough, and it was a high dose. I did better on higher. I would go several days on lower doses so I could save higher doses for days the family did something, or some event demanded that I be in less pain. I finally convinced my doctor to raise the dose and it was like a bird getting wings. It was freeing. This pain condition makes you feel heavy, so with adequate pain control I felt lighter. However, a contractual issue caused them to cut the meds after a few months.

Day 4,304 through day 4,364: The doctor was surprised when he told me they were cutting off the meds. I had, for a long time, wanted to get off the opioids and experience my real pain, as a confirmation, if you will, and so I welcomed it. I had been on opioids for 9 years. He actually winced when he told me they were cutting me off, as if he expected me to be angry. He really never understood my ordeal.

I was on 180m of morphine a day, that’s a lot. That’s 60mg every 8 hours. He suggested how I should titrate off. I had my own math and calculated a 2 month titration period. I spent most of the summer of 2006 in a fetal position as I spaced out the doses, 8 hours, 16, 24, 48,etc. I stuck to my schedule. When the meds were gone, I was back to being unable to sleep, worse than before, and experiencing rising exhaustion. I was not addicted, but physical dependence is a real and brutal thing. I feel for those that are addicted and I don’t remember my 40’s very well. I’d rather they addressed the phsical issues

Day 4,365 through 4,425: I went back to my doctor, explaining how I newly felt different symptoms now that I was reconnected with my pain. I explained how pressing my head in certain areas brought tinges of relief, enough that they should mean something. He scoffed and minimized my questions, telling me my pain was all from my neck. I rolled my eyes as I left his office. He was a good doc, he had been kind to me, but he had a million patients (exaggeration of course). I just mean, at the VA, doctors have many patients.

I returned home and immediately searched for that symptom, “head pressure” which led me, through an amazing testimonial, to Neurocranial Restructuring (NCR), which just rang in my troubleshooting senses as the first thing I’d ever seen that might help. A lot of research confirmed that it was worth a try. I looked for negative reports and found a few, but came to realize that they all pointed to the same, single case. It appears that the articles were just to cast a negative light as those reports were mostly by orthopedic surgeons. There is a downside to NCR in that some practitioners may not be good at it. I found a good one.

I saw Dr. Arrandt in Miami on day 4,423 for a 4 day series of treatments, directed towards the inside of my head. The first day, my vision improved drastically, my spine released a constant tension I’d been living with for years near my coccyx. ON the 3rd day, day 4,425, the most intense pain that had been at the core of not being able to sleep was, miraculously, lifted off of me. As I drove home, I realized I was still in constant pain, but the worst single pain symptom that had been absolutely on me like a fixture 24/7 of every one of the preceding days, was gone. It was like my pain was reduced by 2/3, a bittersweet victory.

Day 4,426 through Day 5,062: I drove home across the Everglades whooping and hollering at all the alligators and eagles I saw. I was ecstatic. I returned home and nobody seemed to even notice until I started sleeping all night and doing more in the day. I was far from being able to resume life. I had a long recovery to go through, more than I knew. I felt like a tiny, inch-tall person. I had been so minimized there just aren’t words. I was wrung out.

I took a job from some really terrible people, part-time, at minimum wage. A former world-class computer software developer now working as a clerk for a tree service, guys who were high on cocaine all the time. Oh, what a terrible job. Over the following months, I found a little work, but man, I had a long way to go. The computer software industry had moved on, my knowledge was of archaic products, but even so, many people used Microsoft Access and I was an expert in it, so I found a company that needed their access software working better and took the job. Luckily it was a family connection, so they were understanding of my slow progress.

I started working on their project 5 months before day 5,062 and it was impossible for me. I would get up and sit down at a computer to write their software and literally, not be able to envision a single line of code, where I need to write thousands. I would get up every day, try to work for 20 – 30 minutes, make no progress, zero, and give up until the next day. I could not sit up in a chair without intense pain, but I was still a ways from know that being upright itself caused me pain. I started to research brain injuries. It’s not a great stretch to imagine that a fall like mine coud result in some brain injury. Reading about executive function really hit home. I’ve still never had a doctor really take that seriously. They don’t know what a brain injury feels like from the inside, I do. I didn’t recognize it for all this time, but I was becoming aware.

I should have gone back for 4 more treatments from Dr. Arrandt. He is an awesome healer and I would go see him tomorrow if I could afford it. It was always money, or lack of it, in the way. Anyway, one day I got up to try and work, quit, and then, just happened to watch a show on cavemen on the History Channel. It showed each species of cavemen and then how their brains had grown. The frontal lobe was bigger and bigger and they went from eating termites on a stick to mastering fire, the wheel, clothing, farming, etc with that bigger frontal lobe. Maybe it needs to be bigger to save the species, but that’s beyond the scope of this post.

The point is, the show made me realize that maybe my brain was impacted by my skull. The top of my head had long felt like there was a stack of encyclopedias on it. Somehow that show made me think that another NCR treatment might help relieve that symptom by providing more space for my frontal lobe. Somehow that occurred to me. I found a doctor of NCR that was closer and was coming to Orlando for a weekend, so I booked a treatment. Luckily, he was real good.

Three days 6/29-7/1/2007 he did 4 treatments. On the last day, I challenged Dr. Steffey to really make a difference. He did 4 adjustments, strongly. When I left to go get in my car, I felt myself walking faster in such an amazing feeling. This treatment had lifted some of that weight off and I could think more clearly and even move faster, given the same effort. I began programming again the very next day. After 5 months of trying, then a weekend of NCR, I started rebuilding myself the very next day. I still think better because of that NCR treatment so long ago. The stack of encyclopedias feeling reduced to more like a small stack of paperbacks. Still a little pressure up there, but a major and lasting improvement.

10,000 days takes a lot to cover. If you’re still with me, thank you.

About NeuroCranial Restructuring: Some folks have asked me about it, so let me explain my perspective as a non-medical person. If ones head is ‘off-center’ for whatever reason, the spine will curve to try to hold it up. That can reflect through the body. NCR uses small balloons and a blood-pressure squeeze pump to inflate it quickly through one of your six sinus cavaties. This effects an adjustment that can be applied at a variety of angles and a variety of strengths.

This might sound crazy but this description fit how it gave me relief. When a baby is born and exits the birth canal, that baby’s head is enlongated. Over the next day or so, that head becomes rounded perfectly for the rest of life. Likely, the structure of our head in nature, is designed for the need to squeeze through that tight space at birth and to blossom into that beautifully rounded baby-skull. I saw this in my kids birth. The processes that did that still exist in your head. If one has distortion to the skull for whatever reason, that impact of the balloon on the sphenoid bone, which touches almost all of the bones of the skull, can cause a release that lets the skull itself, using it’s own muscles, to become more symmetrical, instantly with more improvement over time. Done right. That description parallels how it felt for me.

It’s usually a 4 day series of treatment. On my first day, my vision dramatically improved and my spine also relented a pain that had been with me for years. On the third day, what I believe was a long lasting displacement of my sphenoid bone itself was reset and the never-ending ‘Bikers boot’ shoved into my neck dissappeared, forever. 2/3 of the intense pain seemed to be relieved. In the second treatment series, that last day literally improved my ability to think by removing pressure of my skull on my frontal lobe. It was like my brain was breathing better.

The idea of the balloon, some find disturbing, but I love it, done right. The discomfort is momentary and after the improvements I had, well, I have no probem with it. That’s all about that.

Day 5,063 through Day 5,811: I wanted to learn modern programming languages, but I was still in such a state that it was harder than it should be. I did manage to do some work for those folks and get them a program that worked. I started looking for a real job, but I still had a real problem with being upright, and especially the posture of sitting upright, but I didn’t know it. I found a little gig here and there, but never enough. I had become, literally, desocialized, especially during the two years of the collapse. I got so I wouldn’t participate in conversations. I was outside of everyone. I started going to a Wednesday night open mic with my son, playing songs, listening to others, and music began to restore my ability to socialize. It’s still not what it was, but it was so effective, I don’t how I could have recovered that part of me without music.

I took a programming job that required Microsoft Access and Net. I knew access and did ok there, but I could not figure out Microsoft asp.net, whatever version it was then. It was difficult to program from scratch and I failed to make progress on it. The economy took a dump and that job left me. It would be another 2 years to find a programming job. That was about day 5,811 that I answered a craigslist ad and went to work as an intern for much less than a seasoned programmer should make, BUT! The guy was a guru and I wanted a job with a guru so I could learn to program in .NET. for about 10 months, that’s exactly what happened. He would answer my questions and my knowledge grew through working with it. I sucked up a lot of pain, it was painful to learn, but I did.

That was a good plan. When it came time for a review, I asked for more than he wanted to pay, plus I found a job paying three times as much. I was still limited to 4 hours a day due to the way the pain increased while sitting at a desk. I still didn’t realize the direct connection as it would come on slow.

I had also, in this period, started to actually book gigs as a pro musician. I was doing a few. It was easier to stand for 4 hours than to sit upright in a chair for one. I pressed on.

5,812 through 7,442 II was still limited to 4 hours a day due to the way the pain increased while sitting at a desk. I still didn’t realize the direct connection as the pain would come increase over time. Other sharp pains were present always in movement, they still are. Playing music for an audience became the most effective pain relief. Even though my pain would sometimes grow, I had physical adjustments that helped, and again, playing music is like morphine in its ability to suppress pain. I had a 16 hour a week job and occasional gigs, and it wasn’t a lot of money, but I kept at it.

I picked day 7,442, ironically, also a January 6th, for that was when I started hosting a Tuesday night open mic. That opened up the local music market and built me a friend list of musicians and fans and venues that feels like a huge family. Not only that, it improved my ability to function in public. It improved my musicianship greatly. It improved my self-respect and self-confidence, the latter of which I still have trouble with.

Day 7,443 through 8,719: I can’t even tell you the disruptions and misdirections I took trying to get back to a fully feathered bird. The music was my rock, and it continues, but on this day, day 8,719 (7/6/2018). my understanding of my condition improved when I found information on CSF Leaks. It and a couple other conditions, all very rare and little known, turned out to match so many of my symptoms that I recognized it right away with amazement.

First, a video by Dr. Carroll of Stanford University explained to me why I had gone undiagnosed for so long. Then, I joined a Facebook group with thousands of patients and supporters and learned things that have helped me since. Getting credibility for my own knowledge has been challenging. I don’t ever expect to ever receive curative treatment.

Day 8,720 through Day 9,308 Open mic was cooking, the first venue had closed down and so we relocated to another, and then another, and then where we are now, still going at the Sandbar Grill on Wednesday nights, but day 9,308 was the beginning of the shut-down. The local music industry just died 100%. Boom. No income again. I decided to try to learn the latest programming language from Microsoft and find a client to write software for. Amazingly, I did.

Day 9,309 through day 9,521: Through I had a lot to learn so I couldn’t charge for my learning time, so it was a very thin money period for me. I went to spend several weeks with my 97-year-old Mom in the Georgia mountains. That was wonderful. The pain from being upright was so bad, I could only work effectively laying down, and I use the word effectively lightly. It was hard to make progress through the pain, but I did. I wrote a program in Blazor, Microsoft’s latest and greatest programming platform.

I returned home as more and more places were booking musicians, so I resumed a less full docket of shows. The open mic returned and we were all masked and careful. Being a musician, you could mostly stay out of people’s ‘breath stream’, although there’s always that ‘one guy.’

I had been wrestling with persistent and increasing hoarseness. I went to see the ENT.

Day 9,522 to Today: The visit with the ENT exposed the problem. I learned that I had cancer in my larynx that had affixed itself to me in two places, including one vocal cord. My voice was terribly hoarse, and I continued to try to perform, but people stopped booking me. I had to go into 29 days of radiation to my larynx. Overall, I was very lucky to have suffered no spread and not require chemotherapy.

The radiation ended a couple months ago. My voice has greatly recovered, but remains weak and except for a period of about 9 days when I was three weeks in, I tolerated the treatment pretty well. The doctors and nurses all wanted to know if I had any heart or diabetic issues, which I didn’t. I told them about my chronic pain condition, and though they took note of it, like always, the level of pain is not appreciated. Dr. Lee prescribed gabapentin for me, and during the roughest days suggested that I increase from 1 pill per dose to 2, or even 3. So I did 3 pills 3 times a day. 7AM, 3PM, and 11PM.

A couple weeks after increasing that dose, I suddenly noticed that a huge portion of my chronic pain was subdued. 900mg of gabapentin helped with my constant pain more than cancer pain. Except for the worst days, my regular pain was been worse than cancer pain. The gabapentin has directly suppressed the interruptive property of my pain until the structural pain rises up. This ‘structural pain,’ no one has addressed or even knows about. It’s inexplicable. The only thing that ever helped with that was NCR.

One would have to follow me around for three days, observing my movements and understanding the why behind them to truly understand the torment I endure from the structural component which involves CSF leak symptoms that get very strong.

I just wrote my doctor again. My script had been for 2 pills each dose, and at that level, I still found it hard to be upright. Then I ran out last week. I had ordered a refill weeks ago. Apparently, the oncology department cancelled it and it was never sent. I don’t know why they did that without talking to me. I didn’t know it was cancelled until weeks later. So my GP put a script for 2 pills, 3x a day in. It arrived 3 days after I ran out.

So I sent her a note yesterday. When I received the meds, I wanted to take 3 and see if the significant improvement could return. As I write this, it has. In fact, at my pain levels of a few days ago, it would highly unlikely that I would write a piece this well in a single afternoon.

Epitaph

Before starting cancer treatment, I went to the web looking for Blazor programmers, so that in the case that I was unable to respond to one of my customer’s needs, they would have an option. I met this fellow, Gikas, in Chicago that graciously offered to be available.

Gikas and I had a very long talk. Our careers started about the same time and had I not fallen and ended up with a brain injury and this constant pain. My career would look a lot like his, but it was cut short. I can’t tell you how great the job was that I had. I would have never left it.

I’ve rebuilt the potential for a programming career, even here at age 65. I’m not prone to jealousy of what other people have. Good for them is how I feel. I have always wanted my work, my production to speak for me, but when you are suffering what I was, it’s impossible to plan and achieve like a normal person. Convservatively, being in constant pain for 10,000 days has cost me 2 million, who knows, in my industly with my creativity, maybe 10 mil.

I am, at age 65, suddenly very reflective. The loss that has accompanies this is hard to define a value for, it’s huge. I was a scuba diver, but couldn’t afford to do it, how many dives did I miss. How many months and years was a parked on morphine. I can’t remember my 40’s as I was on opioids at high doses to be able to sleep for 9 years. Pretty much my entire 40’s. I miss knowing what happened those years. Sometimes a person comes up to me and describes something that I don’t remember at all. Sometimes I don’t remember the person I’m speaking with even.

I played guitar with a fellow who was also an ER physician. He once told me he recognized the opioid use in my eyes. Even though I was never an addict and toonly ok my meds as prescribed, I felt the effects of having been on it for a very long time. I don’t know if my eyes still show it. Doc has since passed away. What a guy.

So, this has been an epic struggle. I write this not just for myself but to increase understanding. Other people suffer from invisible conditions and ‘blame the patient’ situation. We are small populations that suffer things like this and get no recognition. I write this with so much compassion for all that suffer from things like this. Use my story to inform.

Meanwhile, starting day 10,001, I will continue to try to overcome, daily.