Houston, We Have a Solution

They say, the holy water's watered down
And this town's lost it's faith
Our colors will fade eventually
So, if our time is runnin' out, day after day
We'll make the mundane our masterpiece

—Alex Warren, Ordinary

Houston, we have a solution. That seems too cliché for me, even if backwards--did I mention that I have dyslexia? That's a different story. And that story is either a success or a failure of our educational system.  Different story, different blog. The Educational Industrial Complex…Ike’s list grows yet again.  

But today's story is not a moon landing, I have the problem, Houston does not.  Yet finally, I do have a solution, and it's pretty simple.  I went to see the pain specialist on surgeon number two's consult team.  I was equipped with  two new  CT scans for my  pelvis and my lumbar spine that the doctor requested only two days prior.  I was able to get in for the CTs quickly because I agreed to pay the cost myself. I thought it was odd that I got in so quickly but I thought it was even stranger that the radiology company said I would have to sign a waiver agreeing to not submitting their cost  to my insurance company.  I didn't understand this until a friend told me they would give me a discount since I was paying out of pocket and the insurance company doesn't like to pay more than what a human has to pay… so they don't like to tell them.  I guess the radiology place was motivated to submit the insurance as quickly as they could so they could get the higher rate they charge the insurance company.  And then I wouldn't have to pay at all.  A win-win? Twenty-four hours after making the appointment I was pleasantly surprised to find out the insurance company approved the two CT scans. I'm not sure what to think regarding who's getting screwed by the medical industrial complex, but I'm thankful I still have $800 in my checking account.

The two CT scans did not reveal anything remarkably different from what we already knew from the original MRI five weeks ago. Let me say that again.  The two CT scans did not reveal anything remarkably different from what we already knew from the original MRI five weeks ago.  What dimension am I living in?   I have a hernia in the disc at the L34 pressing on the nerve root as well as a hernia on the L45 pressing on the nerve root. I also have five weeks of additional conservative care,  four weeks in a wheelchair,  three weeks at the hospital doing physical therapy, two different epidural injections of steroids directly into my spine, and one mountain of oral painkillers, muscle relaxants, and neural-shit to try and ease my pain. Nothing worked, so here we are. Same place we started five weeks ago.  Absolutely nothing has changed with me physically…but now I have a surgeon willing to take the hernia off of those nerve roots.

Through my own understanding of how nerves originate in the spine and run out of vertebrae to the various parts of our body, and the complex way in which our spines bend and twist, it was pretty clear to me that this problem has always been a mechanical one.  I've had hours and hours to study this issue. It hurts when I do this or that.  It doesn't hurt when I'm in this position or that. I've described this many many times to health care professionals and I've demonstrated it hundreds of times to myself or the health care professionals in the room at the time.

Equipped with all this imagery, this new medical professional got the same story from me. I think the imagery provided sufficient proof that all we had to do was isolate the nerves at the locations they were being impinged and a safe decision could be made with regard to a mechanical fix.  She performed all the same strength tests, pressing on my limbs as I pushed against her force. But then she had me get up and try to walk…which was difficult enough. I had to assume the position of bent over at the torso along with the posterior pelvis tilt in play at the same time to remain upright and out of pain.  But then she wanted me to walk on my heels, then walk on my toes, then twist my body left and right.  Whoa Nelly.   I did it…but not without holding onto her for dear life.  I sat back down in my wheel chair.  She left the room to consult with the surgeon and wasn't gone long.  As a team they concluded they could  offer me surgery to remove the herniation at the L34 and the L45.  It's a miracle of medical science.  As Alex Warren would say, “Hopeless Hallelujah…The angels up in the clouds are jealous knowin' we found…” a solution so simple, yet so un-ordinately.

The surgery consists of an incision above my L34 and L45, a separation of the tissue and muscles exposing the spine. They then drill a hole through each  of the vertebrae, and through this access hole they can pluck out of the herniated tissue of the disc, at both levels, removing it from pressing onto the nerve root.  The disc will heal over and I will recover.  I asked about outcomes, and she said the chance of reherniation of the disc is identical regardless of my activity.  It's exactly the same whether I am active or whether I am sedentary.  I asked, “Did you just say I can return to playing soccer after I recover? “  And she said, “That's exactly what I just said.” And I said, “Book it Dano!”  I didn’t say that…but I should have.  I will schedule the surgery on the next business day.   Hopefully just a few weeks from now…if not sooner.

Why is this such an unordinary decision just like Alex Warren’s song? I still feel like this decision could have been made 5 weeks ago.  We knew I had two herniated discs at midnight on the 17th of August. I was in excruciating pain and I couldn't walk. They still don’t want me to say excruciating pain.  It can only be a 10 on the 1 - 10 scale.  The MRI of the lumbar region clearly showed the herniations and the impingements on both nerve roots.  The decision for conservative care was not made by me.  The decision for physical therapy was not made by me. In fact I was against it.  The three PAs who examined me at the Attica holding cell all said surgery was indicated. Yet surgery was never ordered or offered.  The only decisions I have made were to happily complete my stay at Mount Vernon rehab and participate in the physical therapy that was offered as was my sentence. And to seek a second opinion once I was released.  I have now done those things. Yes I am seeking two other opinions, maybe three. This will all play out in the next several weeks ahead of my surgery before any cutting occurs.  The decision analysis that I promised is still forthcoming. But still the question lingers in my mind, with five weeks of pain under my belt, why was I never examined by the actual neurosurgeon making decisions about my life.  I think I hate that guy.  Someone I've never met. A plague on him, just like the other doctors at Attica General who consigned me to this fate, and you to reading this blog.  

In this case the decision is quick and the same decision I would have made five weeks ago.  Sometimes the hardest part of a decision analysis is defining the problem.  To define the problem in this case we had to have a proper diagnosis.  I am now equipped with a proper diagnosis. Yet, that was a phantom.  We were chasing red herrings.  Occam's Razor told us that on day five of my ordeal when speaking with PA number three, we had the solution, firm.  It was obvious to all of those present.  The surgeon’s PA and myself.  The PA said to me, he could not go against the wishes of his surgeon, he was his boss..

But, since I promised a formal decision analysis, here are my options as they have gotten more refined:

1) Rest and hope it goes away on its own 

2) Additional physical therapy

3) Chiropractic manipulation including electrotherapy and possibly dry needling

4) Use of the McKenzie Method

5) Single level disc surgery at the L34 

6) Single level disc surgery at the L45 

7) Multi-level disc surgery at the L34 and L45 

8) Continued pain management including oral medication and additional epidural injections to settle down the discs (without narcotics)

9) Injection of Fibrin to seal the discs

10 Something else

Please note there is no fusion, removal of discs, or orthopedic hardware of any kind, indicated in the surgical procedures recommended. I think we have a huge data point regarding the orthopedic spinal surgeon I have chosen to perform this procedure. Ironically, I missed the appointment with my third opinion, an orthopedic spinal surgeon from outside the Inova network.  However, I will reschedule and get that third surgical opinion.  The fact that we have an orthopedic surgeon not recommending hardware might restore my faith in humanity.  

Which decision would you make? I would love to hear from you.   I think it's a pretty ordinary decision given the five weeks of pain I anticipated. It’s ordinary that I had to wait.  I'm not looking forward to enduring the next few weeks before surgery…but here we are.  Should we be back in the era where narcotics ran freely, two things emerge that run counter to one another. If the surgeons back then were pursuing 4 weeks of conservative care before moving to surgery they had the option to treat their patients pain with narcotics.  This solved the first problem of determining if the back pain could not be solved with conservative care…but brought about the problem of treating their patients with narcotics so they could remain comfortable during that four week period.  I wanted the surgery early. I did not want to go through 4+ unknown  weeks of pain. That’s going to expand to six, seven, or eight.  The cowardly neurosurgeon did not give me that option. Narcotics were also not an option. Human suffering was the only option I was presented with, along with the additional forced torture of PT, learning to live in a wheel chair, lost income, etc etc.  The only thing I have to show for it is this blog. Plague on that guy.

As I waited for the doctor to come back in and give me the good news I was waiting for…I was staring at a large poster displaying the anatomy of the human body and in particular the nervous system.  The question that I will now research and answer for everyone in real time: When nerves form in our bodies do they form in place or do they grow like a vine? Seems creepy that our bodies form the vines of our internal communication systems which would  include nerves, blood vessels, the lymphatic system.  The nervous system that  perhaps originates at our brainstem and grows? The reason this question came to mind as I was examining our anatomy is that I  noticed that the particular nerves causing issues for me originate off the spine and go through holes in our pelvis. To go through holes they kind of have to hit that target blind if they grow like a vine.  But they're not just lined up and kind of folded into our internal spaces like our intestines fold up inside our gut. These long nerves have to run through holes. How did they hit the target? 

Okay the real time answer is simple, or the most complex part of our bodies, which I'll attempt to simplify.  They do grow in place. Which is the only way to explain how they get through the holes in our pelvis. Our nervous system is the very first thing that forms in our bodies.  The tissues that become the actual nerves start as tissue that folds into tubes in the places that they will be.  As this tissue folds into a tube at the top of it will become our brain and the lower portion will become our spinal cord. The horrible disease known as spina bifida Is the direct result of that tube not closing in that early formation. Then nerve cells begin to fill the void in these tissue tubes. Eventually those tubes are full of nerve cells and then multiple coatings grow around the nerve cells…finally the myelin sheath being the last layer to grow.  Voila, a nervous system that extends throughout the body, like a web of vines, that is grown in place. As is everything else in our body that has grown in place courtesy of our DNA map. It's clear both Lorenzo Zoil and Paul would be proud of me for doing that quick research.  I’ll let you all go for that Easter Egg. 

One more thing.  Make sure you get your Shingles vaccine. Apart from the outward symptoms of the Shingles virus, in some cases the virus can attack the  myelin sheath of your nerves.  This is how it travels and lies dormant.  In these cases nerve pain and long term effects can accompany the disease.  Our medical community is not equipped to deal with nerve pain or neuralgia on any level. It’s greater than 10 I can assure you.   Stay away from nerve pain at all costs.  Go get vaccinated today. And always bend at the knees, even when picking up your underwear off the floor.

Do No Harm

I will not be ashamed to say, "I know not",
Nor will I fail to call in my colleagues when the
skills of another are needed for a patient's recovery

—Excerpt from The Hippocratic Oath

Two great books I’ve read pertaining to the medical industry have been written by the same guy, a surgeon named Dr. Atul Gawande.  It turns out he’s a keen observer of the world around him and a good writer.  Two necessary things if you are going to be reporting on things, obscure to most of us, from the front lines.  The two books, “Better” and “The Checklist Manifesto” explore a few things Dr. Gawande believes are crucial for the medical industry to improve.  The book, “Better” results in a set of rules that any of us can use to improve ourselves through the active participation in the world around us.  I surmised his rules in a book review I wrote a few years ago that we must,  “Ask an unscripted question, don’t complain, count something, write something, and change.”  To some extent I am doing many of those things as I evaluate what’s happening to me at the hands of the medical industry right now, as I go through this medical winter.  I’m trying to do everything right, and nothing is working.  So, according to Dr. Gawande’s script, I can definitely ask an unscripted question, “What the fuck is happening?”.  I am definitely in the mood to count.  We are already deep into the analysis of subjective and objective patient pain.  And I’m definitely writing, you guys are witness to that fact as this is blog number 20 on this subject.  However, I am going to leave the script, my apologies Dr. Gawande, I’m going to have to complain,  I’m definitely complaining this round.  We will see what brings about change.  I am changing.  I hope many of you are too.

His second book, “The Checklist Manifesto” describes how the medical industry took the great “checklist” mentality from the United States Air Force and took a huge bite out of the problem of removing infection from surgery in the medical business.  The checklist is one tool the USAF has used and perfected, throughout the years, out of necessity.  To become a lethal fighting force, a force necessary to violent and ridiculously unsafe things, like dropping bombs from the air, in a somewhat safe manner, they had to figure out how to do it over and over again.  For example,  loading bombs and refueling jet aircraft while the engines are running might be considered one of those ridiculously unsafe things. Hold my beer.  How about reloading, nuclear weapons, on a nuclear bomber, while refueling, with the engines running?  In my early days I led the USAF group certifying the combat loading of the Common Strategic Rotary Launcher, CSRL, for just such an operation.  I did this for and with the Department of Defense Nuclear Weapons Safety Board.  A checklist is key.  As are other things, such as highly trained maintenance and operations personnel.  An insane amount of crew coordination. Leadership. All the things.  And we got those procedures approved.  Of course that’s a very specific break glass scenario.  If B-52 bombers are returning from a mission having already unloaded their nukes and are coming in to “reconstitute” (reloading) more nukes as quickly as they can, all hell has already broken loose.  A crucial mistake on the flightline that might result in another bad day, probably would not be noticed in the big scheme of things…yet we still want to prevent that bad day, so we put in the time to get the procedures approved.  After the reload, of course, the crew has to take off, fly to their target, and do it all again.  They use a checklist.  Dr. Gawande correctly identifies the checklist as key to the success of such a complex situation.  Adopting them isn’t unique or ubiquitous to everything yet.  It is however essential if the job is dangerous and complex. 

A checklist is always the best way to complete a mission with the best outcome.  The Air Force also does an extremely good job at providing feedback after a mission.  The debrief at the end of a mission is the best way to affect change.  The medical industry should also adopt the debrief after surgery to critique what happened during the medical procedure.  In these settings there is no rank. The surgeon doesn’t get to call the shots.  Everyone gets to walk through what happened and provide feedback without fear of any reprisal.  If a physician's assistant sees something differently then the surgeon they need to be able to change that surgeon's attitude or behavior.  Gawande points out that many times, surgical teams may be working together for the very first time, and have never met each other before.  To me, this is a ridiculous construct and an immediate red flag of danger.  Be that as it may, the medical industry has made that work, for the most part.  Until a serious problem shows up.

When a problem does show up, preferably not in the middle of a mission, they might be something that occurs that the Air Force would describe as “self-critiquing”.   This is when feedback comes immediately.  Do something wrong and you know about it immediately.  Self critiquing behavior could show up during surgery, for instance, if the patient starts  bleeding because the surgeon cut  something he shouldn’t.  In the case of most surgeries, for things that are happening, the  patient is under anesthesia.   The success for failure of the activity is going to come later…partcualrly in the business of neurosurgery when operating on the brain, spinal cord or around the nerves of the patient.  The neurosurgeon is not going to know if something went horribly wrong.  Maybe they inadvertently nicked a nerve.  The issue is not self critiquing.  The problem is not going to show up  until much later.  If you want to read another book specifically about neurosurgery I recommend, “Do No Harm”, by John Marsh.  Neurosurgery is one of those things where the surgeon shouldn’t be a cowboy.  I freely admit that in the case of what’s going on with me, taking a conservative approach is a safer option…for the surgeon.  It’s not necessarily the best option for the patient.  It may be.  However, under more extreme conditions, in cases where for instance, the patient can't walk, the doctor should take a closer look at what’s going on. Nothing seems normal about my condition.  Failure to walk should be suggestive of something more extreme.  I argue, in this case, it should be self-critiquing for the medical team vying to do something better for my outcome in this case.  They failed in that regard, so here we are.

Enough about books today. It’s time to figure out what’s really going on in my lower back, my L34, L45 to be exact.  Yesterday I noted improvement given the epidural I received last week.  The same can be said today, but things are changing fast.   I’m experiencing some ability to stand erect and put more weight onto my left leg.  As of this morning, I was nowhere near free of the wheelchair.  My ability to put weight on my leg allows me to use a cane to hobble into the bathroom and shower…where I will remain seated on a bench to shower and clean “my bottom area” as the PT who came to the house referred to it.   This evening, however, my direct impression is that the steroids have already begun to wear off.  Tomorrow I will go to see an orthopedic spinal surgeon who hopefully will make recommendations to seal my fate. Or at least complete what I am classifying as my full 2nd option.  I will meet with another spinal surgeon on Friday for a full 3rd surgical opinion, completely out of network.  I will also see a chiropractor for the second time and hopefully begin traction.  The chiropractor hopes that the second steroid injection would provide some relief in order for me to begin traction.  We shall see if the steroid holds into tomorrow.  Yet another option is a product called Discseel, which is a direct injection of a biological agent called Fibrin that is supposed to literally seal and cement the disc providing a stronger disc.  All of this out patient consulting and alternative medicine was not available to me while I was an inpatient.  It’s also a full time job trying to coordinate all of my care…and doing so myself, for the most part.  Once again…it troubles me greatly to ask what a patient would do without my level of participation and or faculty to be a part of my own treatment.

With all of these options, what is beginning to take shape is the very essence of what I have done my entire life…shaping a complex decision into a space where an actual competent decision can be made.   There is actually a scientific discipline known as decision analysis.  Sometimes, good engineers might just say that decisions are just good engineering.  In reality, good engineering requires good decision analysis for this statement to be accurate.  System engineers have the tools at their disposal to make good decisions, such as optimization and simulation.  But local optimums discovered on the slope of a mountain that indicate higher ground, for instance, doesn’t always mean you’ve reached the highest ground.   And if the flood waters are higher than that local high ground, you still die from breathing in water.    

I have a decision to make.  We make decisions everyday…we actually make them second by second…humans just become very good at the very close-in decisions we make…almost by instinct we navigate the close ones without much trouble. Crossing the street. Avoiding high water, for the most part, we stay on the sidewalk.  Since we are not dying continuously, when it’s raining outside, we don’t realize we are making these decisions (unless we try and drive our car into a creek that has overflowed the road).  However, it’s my contention that most of us would die in the very early minutes of an actual Zombie Apocalypse, or some other form of all-encompassing natural disaster.

I know this because, yes, we can cross the street without dying.  We can cook our food without dying.  We can warm our homes without dying.  But everyday there are people out there winning the Darwin Award.  Every winter someone is tragically warming their house with a Hibachi grille and killing their entire family.  I mentioned in an earlier blog, my friend from Uganda who literally had to swim across a crocodile infested river everyday to get to elementary school.  No joke, no lying, no exaggeration.  Another one of my friends simply couldn’t comprehend this as a reality someone else faced, would face, or could face.  Second nature for someone growing up in Africa 50 years ago.

But here I am…I believe…in my own personal ZA.  How could not being able to walk be anything but apocalyptic to my way of life? I have to navigate this situation.  But, I am also someone trained in actual decision making.  Can I make the right decision?  Will I actually be able to play soccer again?  Will I be able to go sky diving, rocky mountain climbing?  Will I be able to go 2.7 seconds on a bull named “Fu Man Chu” (I don’t want to do that).  

Thirteen years ago, I had to make the same decision, just hours before fusion surgery on my C56.  I had already completed the pre-op testing.  Surgery was scheduled.  I was ready to go.   I waived off the surgery…and felt guilty telling the surgeon after all the preparation.  Never feel bad about doing so.  As a result, I continued to play soccer for what appears to now look like an additional 13 years.  I actually went sky diving (tandem) a few years later.  And I hiked in Kings Canyon with Meatball.   Arguably, my L34 and L45 are currently in worse shape, and more crucial to soccer, for many reasons.  

What will drive my decision this time?  Before we get there I still need more information.  It’s coming in bits and pieces but soon I will have a river of information to decide--will it be accurate?  But ultimately I will decide.  I have to--I’m sitting in a wheel chair.  My ability to walk again will be taking center stage.  I hope you will stay tuned.

Human Decency and Respect

Monday, Sept 15, 2025

Medical status update.  

Steroid epidural injection  performed on September 10, 2025 in both my L34 and L45 vertebrae has reduced pain in my left leg during movement by 30%.  I am able to stand fully erect without pain for a limited time.  Still unable to put full weight on the left leg without posterior pelvic tilt however reduction in pain enables significant more mobility options when transitioning from wheelchair to other activities that remain in seated position such as driving or moving onto bed, etc. Pain is tolerable for limited movement (up to 6 steps) within mechanical straight line bending of the left leg at ankle, knee, and hip.  Chiropractic traction begins 17 Sept and I have consultations with orthopedic spinal surgeons on both 17 and 19 September.

Begin Blog about Rehab.  

My experience with the Inova medical system has been horrible and I  believe the medical care that I received at Inova Fairfax Hospital to be particularly appalling and warrants investigation, which has been started through a complaint to Patient Services. The first week at Fairfax Inova Adult Observation Unit (a.k.a. Attica) was so appalling and the subsequent, ultimately unnecessary and resulted in, through pressure, threats, and coercion, the wasteful time I spent in rehabilitation--due to the dimwitted recommendations of the medical team at Fairfax Inova Hospital.  That two week stay resulted in ridiculous expenses and a major waste of medical care, lost wages, and failed recovery time as a result of their recommendation to send me to physical therapy and the time I spent in rehabilitation.

That said, the time I spent at Mt Vernon,  was in fact, somewhat  pleasant due  to the dedicated medical personnel at the facility I previously called Folsom Correctional, who treated me with human decency and respect.  In stark contrast to the care I receive at Fairfax Abysmal.   I now retract the name calling and correctly call Mount Vernon Rehabilitation Center by its true name.   I do not hold Mt Vernon responsible for the improper hospitalization in their facility.  Being sent to their facility under unique threats and other improper use of pressure and coercion are strictly on the hands of an incompetent and potentially vindictive medical staff at Inova Fairfax Hospital and hopefully will be uncovered to the full extent of their poor nature and corrections initiated.

This blog today however is to thank Mt Vernon for the time I spent with them and  to commend the medical team, led by Dr. P, his administration, the nursing staff, the weekend doctors, the medical techs, the therapists, and the nutrition team, all of them, who were if nothing else, fully dedicated to their jobs, extremely friendly, and humane in their treatment.  Many of them have worked decades together at Mt Vernon. They treated me with respect and decency as should any medical care professional.

I've said in other posts that many of their patients in their care were in really bad shape and this team  is set up to take care of the worst of them.  Patients with new amputations.  Patients experiencing recovery from traumatic brain injury.  Patients who have not only lost their ability to walk, they have lost the knowledge of their ability to walk.  None of those things applied to me. I have my wits about me.  I have my balance.  I just lost my ability to walk due to the pain in my L45 when standing or attempting to walk. Many of the patients who go through there are not going to ever regain normal function of their bodies.  The patients must be trained and the families that care for them must go through this with them.  I have complete confidence I will return to full function and will visit those care givers, walking through the front door with the ability to hop, skip, and jump.  I should have never been placed in the position to be among those patients, I felt like an imposter, I was an imposter, all due to the incompetence of doctors at Inova Fairfax.

I'll try to thank them all here but I'm going to miss some of them to be sure.  Without a doubt every single one of them treated me with the humanity that any one of their patients deserved.  They made up for significantly for the in human treatment I received in the Fairfax Inova facility.

Doctor’s:

Dr P,  who comes from PR, is a very friendly and knowledgeable man who was very willing to accommodate all of my crazy requests as I struggled to turn his medical unit into my own personal medical performance unit and my primary office space. I fell short of getting all of my performance indicators tested, such a T, but Dr. P. was willing to accommodate the testing I needed to move my actual diagnosis forward…at the recommendation of the external doctors I was consulting, my primary care physician,  and my own research I was conducting.  I did manage to turn most of the ward, my room, and several common rooms into my personal  office space for reading, writing, working, and meeting with many friends and guests who visited during my stay and brought prohibited items such as Twix Bars, Popcorn and Monster.  Other doctors such as Dr. C and Dr. W,  were in on the weekends. They always talked with me and conveyed my wishes to Dr. P without mistake…despite the fact that the weekend docs have way too many patients. I was told they had to make the rounds to see 57 patients one weekend.  That’s too many.

The nurses were my front line of support, and I met them daily first thing in the morning…with shift change happening about 7 am.

My primary nurses were:

Mercy, Karla, Mangesh, Alex.

The nurses changed with every shift and had to respond to all of my whims and outbursts and wild ideas I wanted to present to them Dr. P about my treatment.  They were always happy and cheerful and provided my medication accurately and in a timely manner…unlike the nursing staff at Attica…which it was never accurate, never timely, and always under some dubious circumstance…and to me, always seemingly under duress.  The nurses at Attica simply didn’t want to be there.  At Attica, if I refused a medication it was signaling something bad…if I took want they were offering as “optional” (narcotics) it I was signaling something else…this was the no win scenario I was placed in.   At the rehab center I was specifically told I could refuse any of the medications I was being given.  The only one I refused…and only on two occasions, was the injection of blood thinner to reduce potential for blood clots in my legs.  I was very active in rehab…I wasn’t laying in bed 24/7.  I never took a single narcotic at the rehab center although it was prescribed as optional, and could be requested.

The next part of my medical team consisted of the Medical Technicians:  

The ones I remember the most were Jane, Harriet, King George, and there were others…

Med techs have the thankless job of taking my vitals every four hours, seeing to my every wish, and unfortunately removing the urinals I had to use repeatedly every night during the early days when I was not permitted to leave bed.  I thanked them often. The techs from Ghana were my favorite and I included Jane, Harriet, Mary, and King George.  King George was taking care of me at the age of 75 and has worked at the rehab center for 30 years.

There were other techs from Jamaica, Nigeria, and Sierra Leone but alas I have already forgotten their names.  But I thank them nonetheless. 

Actually rehabilitation fell into the realm of the Physical and Occupational Therapists.  Unfortunately, due to the nature of my medical condition it was clear to me and the beginning, and reinforced during they attempts at physical therapy, that range of motion and pushing into the pain was not going to rehabilitate what was fully a mechanical manifestation of a herniated disc impinging on a nerve with the very significant possibility of further impingement on a bony vertebrate during motion.  This impingement would be unobserved during a static MRI.  Also, further, during an static MRI when there is no pain.  Pain occurs during movement.  Any diagnosis of reduced strength or pain would have to be observed, diagnosed, imaged, whatever, during the exact period of impingement. The first physical therapist, and primary, was the only medical person to note the reduction in strength at my great toe, during an exact moment of pain when the impingement was occurring.  All other times, strength has been observed during the period of correct alignment and no pain.

Principal Physical Therapists were Kaitlyn and Bethany.  Both of them, with good nature and good hearts, took me through the extent of pain I could endure attempting to apply the skills they learned as Physical Therapists.  I was always willing to work with them, despite my ever increasing knowledge that the root cause of what we were dealing with was not going to disappear without some sort of intervention.  If the disc were to shrink through the use of steroids we had a shot.  Beyond that a mechanical intervention to move the disc was necessary.  This will occur through a surgery or something alternative such as traction.  Neither had been offered to me at the time.  Both are being evaluated this week.  Four weeks after the onset of my condition…and I continue to sit in a wheel chair, even as I write this.

It was clear to me from the earliest days of physical therapy, what was going to happen at the rehab center, is that I was going to be trained to live at home, in a wheelchair, and be discharged.  That, of course, was exactly my fate.  Now at home, however, I am free to pursue the necessary care, throughout patient intervention, to heal and move forward.

Beyond Physical Therapy, the Occupational Therapists would be evaluating and problem solving for the eventual movement home via a wheel chair to begin my life with a disability.

Elizabeth, would provide most of my Activities for Daily Living, which mostly included showering…Elizabeth provided at least 6 showers during my stay…just saying…and a lot of wheelchair transition work.  Other OT provided upper body exercise and a lot of use of the recumbent bike.  I spent a lot of time on that bike.  I also had an OT who was a stickler for posture…change your posture and she was on you like flies on stink.  Elizabeth was the same with brakes on the wheelchair, forget the brakes and you thought you had just kicked her dog she was so disappointed in you.

The Admin Team consisted mostly of Sharon.  She would make sure everything was on schedule.  Admin was the team that snuck into your room in the middle of the night and updated your white board with your schedule.  It always surprised me when I woke up and I had ADL at 7 am…followed by 3 plus hours of PT and OT.  We were busy…it filled the days.

The Nutrition team came in every morning.  My food service favorites are Nika and Demetria.  Eventually they grew tired of me always ordering exactly the same thing for breakfast lunch and dinner. Sugar frosted flakes with an egg and sausage burrito, chicken fingers and chicken soup, grilled chicken with mashed potatoes and carrots… but trust me, I had plenty of Five Guys, Rocklands, and Chipotle on the side.  Thanks to everyone who snuck everything in for me.

Recreational therapists provided the music.  I already thank them in an entire blog post entitled, “Bring me to Life” if you want to go back an read it.

The normal day would begin at 4:00 a.m. That's the first blood pressure, temperature and oxygen saturation I typically remember.  The technician comes in and wakes me up and then does the necessary business of emptying the urinal should the patient have used the bottle during the night. They would also take blood at this time if tests had been ordered the day before by the doctor. 

The nurse would make her first rounds a 5:00 a.m. for the first medications of the day.  

Breakfast was delivered about 6:00 a.m. 

First occupational therapy would occur at 7:00 a.m. activities for daily living and could include eating breakfast but in my case most of the time included taking a shower and getting dressed. 

The rehabilitation center requires at least three hours of therapy a day so the first PT could be 8:00 a.m. If I was lucky it was 10:00 a.m. and I had a few hours to write the blog or at least check email and communicate with one or two folks.  I was rarely lucky…and would get thrown straight into my morning pain.  I would never turn it down.  Some patients on the ward turned down their therapy…I never wanted to be that patient.  Ironically, I knew the PT would be doing me no good…but…I wasn’t going to say no after the experience at Attica.

I did visit the psychiatrist once.  I think this was a requirement for all new patients.  I never saw her again.  I guess she judged me as sane.

Eventually I ran out of clothes to wear and King George and Harriet showed me how to use the washer and dryer in the common room.  I spent most of my time down in the common room where I have my two laptops set up and I would read books, surf puppies on IG, and write this blog.   Even though I had access to TVs everywhere, I never turned the TV on once.  I think television might be dead.

Tech’s or admins would come find me in the common room for lunch…I would never tell them if someone had already brought me Rockland or Five Guys…But a few times I did have friends showing up for lunch and for dinner and we would go out to the recreational pavilion and ordered Door Dash whatever we wanted…they never came looking for me outside.  On one occasion a Chinese Crested visited me…thanks Francine.  That was the only dog, I did not have enough dog visits, considering I like dogs more than people.

Days grew much the same, and the only other thing that was unique, as the one patient on the ward  who had 24/7 security…For the first week he had one security guard stationed at his door after a morning incident for the second week he had two security guards stationed at his door…was never sure what was going on with him…I never saw him outside of a wheelchair so it's not clear exactly what he could do from inside his wheelchair.  I never engage with that cat during my stay and I never make eye contact.  I could see his crazy eyes from my peripheral vision and that was enough…that and his continual obscenities he screamed at the staff…most of whom I’ve mentioned above.  All of whom do not deserve treatment like that…but all of whom treated him with human decency and respect…just like they treated all of their patients.  I hope some of that will eventually rub off on that particular patient.

The Pain Will Continue Until Morale Improves

“I wanna run through the halls of my high school
I wanna scream at the top of my lungs
I just found out there's no such thing as the real world
Just a lie you've got to rise above”

—John Mayer, No Such Thing

There's this elephant in the room that's so big it's starting to take up space in my head. I joked about it early on.  “Don't you stick that knife in your leg Ricky Bobby”.  In the event that this was all in my head…psychosomatic…it always seems kind of funny, that that might be the case.  But it hurts too much to laugh. 

I wrote an entire chapter on the pain when I started this journey.   The pain I was feeling  seemed uncategorized and way off the chart from what I was being asked by the medical community.  The pain seemed to be unwritten, in some nonlinear region, not described by their “tell me you pain on a scale of 1 to 10”.  Now a few weeks later with more knowledge and pain under my belt, and the more and more reading I do that says pain is subjective the more and more  pissed off I get.  Not so much for me but for anyone out there experiencing nonlinear pain that is being ignored by the medical community and being pigeonholed into some belief that their pain is subjective and they are, at the end of the day,  being pussies (it's my blog I get to say what I want to say).  By saying pain is subjective the community is basically saying that the pain I am feeling is not the same pain someone else might be feeling and since it's subjective someone else may not feel the pain as severely as I am and that they could potentially be walking, and not in a wheel chair,  because they would be able to endure the pain differently and would be able to walk simply by enduring it.  I thought as we went through this the credibility factor as we got closer and closer to a diagnosis would in fact prove the pain is real. Instead what I'm experiencing is more and more discussion of the subjectivity of my pain, and that, In fact the longer this drags out and the more it looks like the pain is all in my head.  Well anyone who thinks that can kiss my ass. To me the evidence that is being ignored has become more and more compelling. I don't like to see surgery as the only option but unless we have a few more breakthroughs happen, and happen very quickly…I don't see anywhere around a surgical solution.

I've heard this bullshit about subjective pain throughout my life as I've dealt with various bouts of pain in different ways, shapes and forms when trying to understand the pain of others. For sure I have friends who have jumped out of airplanes and/or landed hard on aircraft carriers and should be feeling the pain of compressed vertebrae in their spine far  more than what I have been feeling. I've read Sarno's book and believe there are times certainly when motion is lotion and getting out on your feet and moving will take care of some of what may be wrong, and this includes stress and giant forms of anxiety. Muscles get tight. I've played soccer my entire life.  I've pulled multiple muscles. I've sprained my ankles. I've had twisted knees.  As I discussed in 2013, I went through this with my C56 after taking a pretty hard hit from the side. I know when it's time to rest, ice, and compress a muscle.  I also walked you through my motorcycle accidents which tend to account for perhaps a lot of arthritis in my spine.  I know when pain is a phantom and when pain is pain, and it hurts.  

Some pain is indeed a function of nature versus nurture and past trauma and can be included as a significant influencing factor based on your past and what you've experienced.  As doctors struggled to figure out and attempt to treat what might be going on, scales were created, and words were used. This apparently is why words are so important to the diagnosis.  Over the past month I've been asked those words so many times in so many different ways it's clear to me the well-intentioned medical workers asking those words have simply no idea what they're talking about.

Basic searches for pain show up in two categories,  and when I'm being asked about my pain by most of the medical staff I'm being asked about whether this pain is somatic or visceral. Somatic pain being what we typically feel from my household injury such as a cut, or stubbing a toe or spraining an ankle. Visceral pain normally occurs from an internal disease or surgery. Both of these categories of pain seem to be the types of pain that can be addressed on a scale of 1 to 10…they are very linear. And there are specific words that mean specific things in either both categories.  Visceral--deep, throbbing, aching, diffuse.  Somatic--stabbing, sharp. That's what the mental community is looking for. There is a third type of pain that doesn't seem to be addressed in these simple queries. I am not being asked about nerve pain, which strangely when dealing with anything related to your  spinal column, should immediately be singled out as nerve pain. At a minimum it should not be left out of the assessment.  Trauma that affects the spine should be the first indicator, since I had not fallen off my roof, I believe that type of trauma was ruled out in the ambulance. Autoimmune diseases create a huge amount of nerve pain, metabolic diseases, and infections such as shingles. When patients present in these categories the 1 through 10 scale should be thrown out and patients should be met  where they are…probably with a level of pain that can't be categorized or understood so the medical professional shouldn't even try to assess pain.  Rather they should assume that it is off the charts and simply ease their suffering so they can begin an actual dialogue about what may be going on and how to treat the condition…not the pain…

Having been an analyst all of my life with an engineering background, measuring what's going on has been my natural state.  I measure everything to the annoyance of most people around me. Everything has a scale and I evaluate everything on that scale. But you have to use the right scale for the job.  When I brought up pain in my early chapter, “Pain goes to the Moon” I was addressing nerve pain. Since I personally felt this level of pain previously when I had a pinch in my C56. It wasn't something that could be endured and if I wasn't on my way to the emergency room I was heading upstairs to jump off my roof.  Somatic and visceral pain can easily be placed on a scale of 1 to 10 since it exists in a very linear region. Nerve pain on the other hand clearly is not linear. Pain from nerve damage, pain from arthritis, pain from things like other immune diseases such as shingles, should never be addressed on a linear scale. I would go so far as to say if a medical professional addresses nonlinear pain with a linear scale it's time to bring up the “M” word. Which I most definitely will do before this journey I am on is over.

I've had another affliction where I can safely say if you consider what I'm talking about you might have a more profound understanding of where pain can come from that could be off the scale. Gout is one such affliction. I like to talk about gout because in the literature it is referred to as the disease of kings. And since I have it occasionally, mostly likely from eating pounds of steamed shrimp in one sitting… I must be some type of king.  Typically it manifests in the big toe…but to understand what's going on here is to understand where significant pain can come from. Simply put, uric acid is going to crystallize in the joint of your big toe.  Think about that as if all of a sudden as someone has inserted broken glass into the joint of your big toe. This is an emergency situation and something that cannot be ignored. That's a level of pain that is going to be necessary to address and quite possibly runs higher than a 10. Nerve pain runs significantly higher than a 10 but gout is going to drive you straight to the emergency room. If someone tells me gout is subjective and I can show you the crystalline uric acid in my joint I am going to place most of my foot straight up your ass.

The same is true when I can show you an MRI with a bulging disc that is impinging on a nerve root. If you can see a herniated disc pressing on a nerve and a doctor is telling you that your pain is subjective I'm going to tell that doctor to go straight to hell. 

We learn as analysts that correlation is not causation. Yet sometimes correlation is exactly causation. Such as when you can see crystalline uric acid in the toe, or a shingles rash, or a herniation that's pressing against a nerve root.  Sure steroids and NSAIDS may shrink it…bring them on.  But also, there are mechanical ways to remove that herniation from the nerve root.  Traction springs to mind…yet that is alternative care.  Physical Therapy is what was prescribed.  Range of motion…nothing to remove the herniated disc from the nerve.  Alternative care, such as chiropractic care, can manually manipulate joints to try to decompress what’s going on.  WHat wouldn’t that be acceptable care?  Surgery, for sure, will be manipulating that nerve…either by trimming the disc to get the impingement off the nerve, or ultimately removing the disc altogether and fusing the vertebrae.   

I've had my second epidural this week…another manual method to try to reduce the size of the herniation and get it off the disc. . The effect of lidocaine had on my L34 and my L45 was almost immediate.  Yesterday I had a decent report but today the lidocaine seems to be wearing off so I'm hoping the steroid will kick in shortly. The point I'm going to make is that we believe my pain is coming from this area…this area was addressed with a very specific needle and a very specific amount of painkiller that very specifically changed the level of pain that I was in. There was nothing subjective about it. This was a highly objective procedure and it was highly targeted and carried out in an extremely precise manner.  And it had a very precise and immediate effect.  The same kinds of things have been occurring and have been observable throughout this three week ordeal…if I expand the L45 by bending my torso, I can remove the pain.  If I do a posterior pelvis tilt, I can remove the pain even more.  Yet I remain without a diagnosis with the medical community relying on some strange hope that my condition will either disappear on its own or I should begin coping with my own pain and stop bothering them. 

If I can feel the pain come and go it is not subjective.  It is clearly objective.  So to me it is incumbent upon the medical community to come up with a better way to assess pain.  They take our blood pressure and pulse every four hours whether we need it or not.  How about, take our pulse when our pain is induced, as a base line?  Measure something.  It’s random and disassociated it they don’t deliberately try something as novel as doing this.  The faster I pound on this back the more he sounds like a motor boat.  Cause and effect.  He puts pressure on his foot, his pain goes up, his pulse goes up accordingly.  Simple. Objective. Measurable.  There are other ways to do it.  

I’ll continue to take the meds as prescribed.  Methocarbamol to relax my muscles, Motrin and Tylenol to combat some of the pain, and Gabapentin to do the rest for my physical nerves being affected.  The pain will continue until morale improves.  Never has that been more true when defining pain as subjective in the individual.

Live Like You Are Dying

“Well, I spent the whole night fighting
Fighting with some ghost
And when the break of morning found me
I'd both won and lost.
You see the question isn't are you going to suffer any more.
But what will it have meant when you are through?
The question isn't "are you going to die, you're going to die.
But will you be done living when you do?”

—Justin McRoberts, Done Living

Farley sang me a song and sent a video.  His video is available upon request.  You get some of the lyrics here though...

So this is a great segway into Tim McGraw's great song,

“I went skydiving, I went Rocky Mountain climbing
I went two point seven seconds on a bull named Fu Man Chu.
And I loved deeper and I spoke sweeter

And I gave forgiveness I'd been denyin’

And he said, Some day I hope you get the Chance to

To live like you were dyin”

After Farley sung his haunting song to me and then  Tim McGraw enters my cranial jukebox...I am immediately transported into Lewis Capaldi’s beautiful lyric,

 “Now, the day bleeds into nightfall...And you're not here to get me through it all. I let my guard down and then you pulled the rug.  I was getting kinda used to being someone you loved.”

Albeit three completely different meanings all are relevant to the serious business at hand and worth a listen. I hope Farley covers Capaldi and McGraw soon and gives us all a listen. Back to the business at hand, and don't worry I'm not dying. But it is time to start living again...

When they ask if you're allergic to any medications I always say no because I'm not allergic to any medications.  But  what I always forget to say is that I'm actually allergic to chlorhexidine. Chlorhexidine is the antiseptic they now use to clean your skin before an injection.  They moved away from iodine and isopropyl alcohol due to the more resistant strains of bad bacteria deciding to live on that shit.  Anyway, I’m allergic to it.  I discovered that because when I donate blood both the Red Cross and Inova Blood donation centers use it.  I have to remind them everytime or I break out with a rash about two weeks later.  Not just in the area of the stick…but all the way down my arm.  The other property of this stuff is it  takes more than a few days for your immune system to show up with the reaction…so very hard to pin point. It presents very similar to poison ivy…but it doesn't move into the blistering phase…just that initial rash and itchy skin is very similar.

And... yeah…they cleaned my skin with chlorhexidine many many times over the last few weeks and now the autoimmune response is showing up to add to my issues.   The worst part is when I Google allergic reactions to chlorhexidine it’s like a red flag.  I need to go to the emergency room immediately. It's  time for an immediate injection of epinephrine.  Shades of John Travolta stabbing  Uma Thurmond in the heart with a big needle.  Don't do that…not real…but that's what flashes in my head.  It’s not that bad…it's just a rash and a case of the itchy showing up in all the areas I got needles poked in. 

The first time I got it,  I thought it was poison ivy. It was almost impossible to trace back to the donation of blood because it takes my body a long time to actually react, seemingly by that time you've washed your skin from the application of chlorhexidine multiple times.  So imagine my surprise over the weekend when I started breaking out in a rash.

They drew blood for testing including placement of IVs no less than six times.  The big one however was the injection of blood thinner every morning to prevent blood clots in my legs as I was laying in a hospital bed.  Alone, that was about 14 injections in each area cleaned with chlorhexidine. Along my belly (subcutaneous) and the same in the fatty tissue under each arm (subcutaneous). So with over 20 injection locations I was never told once they were using chlorhexidine.  Here is an excerpt from the FDA website on use of this product.

“Health care professionals should always ask patients if they have ever had an allergic reaction to any antiseptic before recommending or prescribing a chlorhexidine gluconate product. Advise patients to seek immediate medical attention if they experience any symptoms of an allergic reaction when using the products.”

They don't even ask me at the blood clinics…so the reaction is either very rare or people who do this and their reaction doesn't show up for 2 weeks have no idea it's from the chlorhexidine…so do we really know?

I've saved the best news for last…I had three doctors appointments today.

I met with my new chiropractor at the Roselle Wellness Center in Merrifield.  I met again with my pain management doctor in Cascades. And I met with my primary care physician in Centerville. Meeting with all these outpatient physicians was not possible from inpatient treatment in Mount Vernon so I was waiting to get out of Folsom to finally get what I believe to be real care.  I basically wasted 3 weeks of my life. It was clear on the 18th of August I should have been released, albeit without the ability to walk, into my own recognizance because these quacks weren't going to get it done.

Because of my bent and tormented shape the chiropractor did not want to immediately begin traction as I needed to flatten my body out. Although he has an advanced bending and reciprocating chiropractic bench to see if the better epidural will have some effect. My chiropractor said the pain doctors who administer the procedure are much more accurate and then those who do it inside the hospital.  

However, first I was able to lower myself down onto the chiropractor's table on my belly from a kneeling position.  I was laying on my knees and from there was able to lay prone.  He wanted to put light traction on my L45 and so he simply grabbed my ankles and began to pull my pelvis downward…as theorized as soon as he unlocked the L45 the pain of the pinch went away. So this is not unlike me bending at the torso and performing the poster pelvic thrust to make more space at the L45. All kinds of ways to make space in the L45 and conventional physical therapists don't see it as real therapy. This was very promising to the chiropractic doctor and to myself. The plan will be to get strapped to the traction machine in about a week after we see if the next injection into the L45 has an effect. But get a couple courses attraction in before any surgical decision is made to trim the disc.

Next stop I was over to Cascades to get the injection.  Keep in mind my insurance company has already turned down this injection as unnecessary for at least another 2 weeks. 

This is a guided epidural and I'll provide the only picture I've  posted thus far  because I think it's important.  This doctor wanted to get an injection into the L34 as well as the l 45. And his words to me were he was going to get that needle right up to the nerve and even kiss it. Before he injected both the lanacane for immediate relief and then the steroid that could take the requisite 24 to 72 hours to kick in. When he approached the L34 my study of vertebrae and nerves in the lumbar region became pertinent…I could feel in my leg he was screwing around with the right nerve bundle as I could feel it on the right side of my left leg down to my knee…classic L34. When the injection came it was an electric shock right down to the right side of my knee…he nailed it and that side of my leg went numb. 

Now it was time for him to find the real offending impingement.  Very similar as he approached the nerve root I could feel it shooting down the outside of my left leg around the knee, down the calf, and right into my big toe. This is the sciatic nerve. So when the injection came it was exactly the same electricity all the way down to the big toe. Pow. My left leg was overcome with warmth and numbness. Something major was happening.

He withdrew all the needles and showed me the pictures of what he had been doing while I was face down.

For the first time in well over 3 weeks I had my definitive answer. L45 has always been the culprit and the neurosurgeon at Inova Fairfax should begin his plans for an earlier retirement. For 3 weeks his moronic decisions kept a patient in both mental and physical duress. Three of his physician's assistants came to see me and all three of them indicated to me we had a real problem, and surgery was most likely indicated. The neurosurgeon chose not to listen to his team.  Nor did he ever bother to come examine me himself. Unacceptable behavior from any member of the medical community… and if you believe in the Hippocratic Oath…clearly something that was misapplied and or not taken seriously by this particular neurosurgeon. What exactly is harm?  I feel harmed.  Those of you who have read this blog can make no mistake in that regard. 

After this appointment I was able to make it out to my primary care physician in Centerville. I recapped everything so my primary would know what's going on and we also made adjustments to my blood pressure medication and possibly my cholesterol medication. He also put me on a better stomach medication to keep all of the Motrin and other pills I'm dumping in my stomach from causing too much turmoil to my stomach lining, keep it from bleeding. Which I might point out, It's already been confirmed that it is bleeding…Thanks to this long-term use of ibuprofen at the hands of the innova and the witch doctor neurosurgeon.  

My primary care physician has recommended I don't use the Inova system for my third opinion on spinal surgery and recommended a surgeon affiliated with Reston Hospital. I'll be making that appointment properly. My second opinion will be coming from the surgeon at Ortho Virginia I have already met with and immediately requested the two additional MRIs because we are not getting a proper diagnosis from INOVA Fairfax, aka, Attica, aka, Fairfax of Abysmal.

So look…for today... I'm still in my wheelchair. But moving in and out of the wheelchair has become abundantly easier as if I do make a movement mistake, I am not placed immediately in blinding pain…I guess we would still call that a 10.  Transitions seem to be around 6 not comfortable but something that can be tolerated.

Gulliver's Travels

“Go forth, Voyager,
and copy if you can,
this vigorous (to the best of his ability)
Champion of Liberty"

—Jonathan Swift, Epitaph for Jonathan Swift

I took my first trip to the supermarket in a wheelchair. Wanting an occupation in order to help, my sister-in-law called and asked for something to do.  A trip to the grocery store was a real requirement, something I needed to do, and something she was more than “willing and able” to assist with.  

Well within the appropriate tolerance of agreed upon departure time, my sister-in-law arrived with her husband to drive me up to the Safeway.  Sitting in the wheelchair looking up at them I thought they were very tall people…this I thought was a very strange observation, however for whatever reason, I didn't keep that to myself and I was compelled to speak it out loud. Note to self:  Stop speaking out loud.

First job was getting out of the house and into her SUV in a safe manner. With the help of my kid we properly exited the house through the back door and I was able to roll around to the driveway without much in the way of safety issues. Using the same route this had not been our same experience moving my father around the house in his wheelchair the previous year.  On one early deployment with my dad I recall there was a very  real possibility he was going to end up under the deck.  Crisis averted and lesson learned. I was a direct beneficiary of some of this early wheelchair knowledge learned by assisting my dad.

Other precautions dictated that we make sure the dog was secured in the house prior to opening the front gate. Having not taken this precaution the dog was freedom bound.  Luckily the dog, who enjoys going for rides,  immediately leapt into the back seat and was apprehended and led without further ado back into the house where she was properly secured.  At that point I was able to transition into the backseat and the in-laws were able to fold my lightweight wheelchair and place it in the back of their SUV.

First and second rule of assisted wheelchair ops.

If nobody's watching the dog.  Secure the dog or they'll make their necessary and instinctual run for freedom.

Should a patient end up under the deck, the assistant should check for breathing. If not breathing, promptly cover with dirt and apply rule #1 above for about 2 years.

We drove to the big Safeway and my sister-in-law dropped her husband and I off in front of the store and she went to park her vehicle. Having no handicap placard, we did not park in a handicap space. We were only able to admire the number of unused handicap spaces required under the ADA.  Not that I care that much but I'm curious, having been discharged by the hospital in a wheelchair,  why was a doctor's note not included in my discharge instructions? It is now incumbent upon me to obtain a doctor's note in order to apply to the DMV for a parking handicapped parking placard. 

Rule three of assisted wheelchair ops 

Ask for a signed disability note from your attending physician before leaving his office. This is necessary to obtain a parking placard from the DMV. And at a  minimum this equips you to go do battle with the DMV.  At this time I do not know what other red tape will befuddled your attempt at successfully obtaining a disability placard…mileage may vary.  You can be assured that plenty of open handicap spaces will be available should you obtain a placard. Good luck.

Within no time I was rolling into the Safeway with the inlaws in tow pushing two shopping carts. I continued to notice one thing about my two-in-laws from the vantage point of my wheelchair.   Both of them continue to appear very tall. Both in the rehabilitation hospital and in my own household, where I was near many people, I did not perceive any of them to be particularly tall.  Either I have a perception problem or these two venues were packed with Lilliputians at some point in the past and I was never made aware of their presence.  I fault Jonathan Swift for never making such a pronouncement in his writing.  It's clear Swift had disabilities from an early age, and his satirical writing reflected many things that Gulliver had little control over…very tall people and very short people were but two of the oddities he would discover during his travels. 

I am now very much interested in the people that talk like horses or is it horses that talk like people? I can't remember. I know for sure that the Yahoo's are more commonplace in today's society although I'm not sure that's what Swift had in mind in 1726. I will be on the lookout and report back should any more characters appear in my disabled state. After some quick research I have discovered that Swift had a lot of money and ultimately had a severe disability which required 24-hour continuous care in his later life.  His people cared for him until his death. He did not crawl off into the wilderness.  In his will a large donation established one of the first mental health hospitals in Ireland.  Don’t know if the people who cared for him until his death were compensated or not…but his money went to a very good cause.  I suspect, with no evidence, they were most likely screwed.  

Note to self; conduct independent survey of the heights of individuals I come into contact with while seated in a wheelchair. This test is to gauge accuracy of perception and to ward off the perception of early dementia. Should people talk like horses (or vice versa) …well let's not think about that at this point.

As we walked into Safeway we immediately passed the flower stand.  I asked my sister-in-law if she would like some flowers which she deserved for taking me to the supermarket and she turned them down immediately. If I was ambulatory I would simply have grabbed her flowers and purchased them anyway. As it stands, relying on her for placing items into the cart, it would have been difficult to secure her a bouquet of appreciation flowers in a covert manner. 

Rule four about assisted wheelchair ops.

 Difficult to make covert purchases. Further it is difficult to surprise people who are shopping with you with gifts for them.

The fruit and vegetable section came next. The aisles were wide enough for me to roll unassisted and everything I needed in that section was easily reachable. I grabbed plums, red grapes, bagged lettuce for salad, green beans and a combination of broccoli cauliflower and carrots. I also grabbed a carton of sliced mushrooms.  Everything I needed was conveniently at wheelchair level and there was nothing I had to reach for beyond that even though I was in the company of two giants. Gulliver called them Brobdingnagian.

Rule five about assisted wheelchair ops. 

You cannot push a cart in front of a wheelchair. Don't even try. Rather your only option is to use the electric scooter with a built-in basket at the front of the store. In the presence of two very tall in-laws, they can push the shopping carts for you just fine. I'll try the scooter next time. 

Continuing to move along through the store I couldn't help but notice the tile was easy to roll on and the floors of the store seemed particularly level…I don't know why this surprised me, as most construction includes level floors. I think because I've been doing so much rolling on sidewalks, asphalt and concrete, and indoors at my house includes a lot of stairs and transitions…by comparison a good floor is  very nice. The entire floor at Safeway was smooth and without any transitions.

Rule six of assisted wheelchair ops 

 Pick a well known store that clearly became compliant with regard to requirements under the Americans with Disability Act many years ago. It definitely shows. 

Next stop was the meat department.  I quickly grabbed the last remaining  fillets  which were available within grabbing distance. Cheese steaks are on the menu.  They seem to be all out of 80/20 ground beef and my sister-in-law did look on the top shelf, which I could not see, but of course today there was no 80/20. I grabbed the Wahlberg pre-made patties and placed them in my cart. I have never seen Mark Wahlberg in any of his restaurants or in the refrigerated meat section at the supermarket. I wonder where he is hiding.

As stated previously the isles at this particular Safeway are wide enough for me to navigate the entire store and never impinge or block a fellow shopper. Even though on this Sunday morning the store was fairly well occupied nobody got in my way and vice versa. 

At this point both carts started to get full.  A couple pallets of water and eight rolls of paper towel contribute to this phenomenon.  I checked my shopping list…and it looked like everything was checked off.  My brother in law recited the standard rule regarding forgotten items, “You know exactly what you forgot, when you get home”.

The refrigerated items were next.  I rarely buy milk but in this case, I’ve been eating Sugar Frosted Flakes in the hospital for two weeks.  It was one of the rare treats I experienced during my incarceration.  So I’m buying them to eat at home and that requires milk.  It turns out they are great.

Also in the refrigerated aisle I must buy a big back of shredded cheese.  For nachos or other fast meal options including the cheese tax that must always be paid.  Death and the cheese tax are as certain as death and taxes.  I’ve been advised that shredded cheese is never the right choice, block cheese is the way to go for many reasons.  Besides the indelible point that I was being judged, the fact remains that shredding the cheese negates the entire reason to have shredded cheese in the refrigerator to begin with; you don’t have to shred the cheese.  Just like slicing bread, why would you slice bread?

After selecting the cheddar-jack blend (yet another reason to buy the pre-shredded cheese) all that remained was to enter the beer cave.  Good news at this large Safeway they have presupposed that someone in a wheelchair will be entering.  The automated door slid open on my arrival, and I rolled right in.

Then it was time to check out.  We rolled into the checkout aisle and my sister-in-law helped unload the carts on to the belt.  I eventually rolled forward until I was under the debit card scanner.  I keyed in my shopper's card and my debit card to the console and waited for completion of the checkout. It was odd sitting below the level of the debit card scanner and when that happens it is hard to punch in the right pin.  It seemed to work as approved showed up on the screen.  I waited for my receipt out of consideration for the cashier, I normally turn and run out the door saying no over my shoulder when they ask me if I want the receipt.  Being in a wheelchair compelled me to be nice…I’m not sure why…I’ll have to think about that for a bit.

We rolled out to the parking lot, the SUV was close, so she didn’t have to pull the vehicle around.  They both loaded the car, and I jumped in from the side as they negotiated on who was putting the wheelchair in the back.  I’m still not sure who did it.

The best part of all?  They brought the groceries in.  For that reason alone, being disabled might be underrated.

All in all I rate this Safeway adventure as wheelchair accessible.  I am looking forward to shopping at the Safeway by myself. That will be discussed later as I learn more about unassisted wheelchair ops.  Stay tuned.

Trapped

"Somebody's gotta take care of him"
I quit school and that's what I did…"

― Tracy Chapman

There's an active component to rehabilitation that enhances recovery when you are an inpatient.  There is an entire team working on your behalf.  When you transition to outpatient--i.e. you are sent home--all of that deliberate care comes to a screeching halt. The reality is that you are alone with the exception of those volunteers around you who accept your condition and are willing and able to assist.  And we know how that works when seated in the exit row.  “Are you willing and able to assist?”  “Yes, now leave me the hell alone so I can enjoy all this space in the exit row”.  You don’t actually have to do anything when seated in the exit row.  I’m not sure at what point in history those who loved you would simply pitch in, full time, to help their disabled family member or decided the exact opposite.  Early on it was more likely that they allowed their loved one to crawl off into the wilderness.  I guess they could take you to the wilderness to speed things up.  It’s better for them if they didn’t know you were crawling off. I’m going to keep a keen eye on my family members, as a general rule.

The inpatient team does try to assess your home life to make sure they are not sending you home completely unprepared, and if your family is truly, “willing and able to assist”, but the contrast is stark.

In patient means, breakfast, lunch, and dinner

In patient means always hydrated

In patient means BP, pulse, temp, and O2 every 4 hours

In patient means all meds on time throughout the day

In patient means bedding changed daily 

In patient means 3 hours of therapy daily

In patient means daily visit from doctor

In patient means environment can handle disability

In patient means all sanitization requirements are met

In patient means an occasional shower 

In patient means visits from friends and family

This takes a team of care providers and someone to coordinate all of it.  At a minimum it’s a doctor, a nurse, a technician, an admin scheduler, a therapist, a cook, and someone to bring you the food. In a hospital setting, it all comes together, so the responsibilities are part-time and shared across the ward.  Nothing close to this can be provided at home.  That said, I was told, when the weekend doctor came to talk to me--and looked highly annoyed that I wanted to recount my entire story to him, including sidelines about how great my dog is--that he has 57 patients to visit on Saturday.  I don’t know if that's true or not, but I’m sure he did have a lot of patients to see.  This is a mess for medical care.  Maybe it’s physically possible for him to visit every patient for 10 minutes in a 12-hour shift. How do they involve themself in the intricate care of so many patients?  That’s a different problem, of many problems. 

Once you go home, it will take days for outpatient therapy to kick in and even then, at a much slower pace. I have a nurse coming to my home on Sunday, time TBD, to evaluate what the in-home therapy will look like. She has not scheduled a time yet.  Tomorrow is Sunday.

Being sent home to navigate all of this on your own quickly degrades into the minimum required care. Family members, while positive and well meaning, cannot and should not have to carry the same burden as outlined above.  That’s a full time job for someone else, who, of course, must be compensated appropriately.  There is only so much a family member should do for a loved one.  Mileage varies.

Most homes physically have little done in advance for handling a disability. You might have smoke alarms and a fire extinguisher, but doubtful you have a wheelchair accessible sink. So that means you are making home health care decisions based on its availability on Amazon.  Purchasing medical crap on Amazon is essentially purchasing crap. It's rubbish, I can't use it.

Insurance pays for certain items, like a wheelchair, but expect it to be the bottom rung on the quality ladder.  I bought a second, higher quality wheelchair out of pocket, but even then I didn't jump right into the carbon fiber model. This one is essentially middle of the road quality and weighs in at about 25 lbs.  It does have a nice  blue color to it, and quick change spoked rims with inflatable rubber tires. I'm thinking about taking it over a sweet jump if I can find one. Not sure why I need  quick change spoked rims though.  I guess they are nice to have if I blow out a tire and have to hit the pit.

The cost of proper handicap accommodations in the home, modified after the fact, would be prohibitive for most people even if the house could accept the changes, such as larger doors, raised counters, and smooth transitions from rooms to levels. My house was built in the fifties.  I’m assuming those disabled family members who might have lived here early on most likely disappeared into the wilderness.  Otherwise, the width of doors would be slightly wider.  Am I right?

So now I'm trapped in my wheelchair at my disabled home for the disabled. Imagine how Charles Xavier felt as he prepared his home for the gifted children.  “First we need to get rid of all the mirrors.”  “Huh?”  “Don’t ask.”  “Check.”    “Next we will need wheelchair ramps.”  “Really? Are those for the gifted children?”  “No, those are for me.”

 So here we are and now I'm free to explore my home from a completely different perspective.  I see new things I've never seen before even though I've lived here for 15 years.  Locations where spots of paint were missed along the trim (that’s on me). Unfinished areas under the cabinets (not on me), scratches on walls and doors at dog level (most likely on the dog).  And OMG the clutter.  That’s an easy fix.  But before the clutter is removed, wheel chair ops are less than optimal.  Ironically, I can’t remove the clutter.  I must rely on a family member.  I imagine each family member has a certain number of fucks that they give at the start of all this in home care…and you slowly use them up.  It would be nice to have a visible counter, so I know exactly when it’s time to start my slow crawl towards the woods.  So, they don’t have to drive me, I wouldn’t want to impose.

What I don’t have, blissfully, is a Type-A at home with me managing my care.  I’m the Type-A in these parts and I’m in the wheelchair.  If I had a Type-A, I would imagine they would be over it by the end of the first day with me.  Or we would be fighting.  I’d lose; I’m in a wheelchair.  But the scenario is funny.  

“You need to do this or that.”

“Fuck off.”

“OK, I'm over it.”

“Good.”

“Good.”

“Could you get me my meds?”

I’m learning what I can and cannot do from the seated position.  Standing is incredibly problematic.  Grabbers help…if I preprocessed the scenario and thought I might be needing them. Going outside--other than jumping the transition to get out onto the deck--is even more problematic.  Door Dash is easy...although very expensive.  Even if you Door Dash 7-Eleven, expect prices to jump 8-10%.  Then add delivery.  Then add a fee.  Then add a tip.

None of this really matters though.  I’m going to get better.  This is just the off-season.  I’m recovering--not really and not yet.  But I will walk again.  I’m already hit with the imposter’s guilt sufficiently for all of us.  What if this disability was permanent? The thought of going through the process at DMV to get a handicap permit…occurred to me…but then quickly faded from anything I needed to do for two reasons.  1) the application process is daunting 2) the application process is daunting.   Not interested in fighting with DMV.

To say I have a new appreciation for the disabled and what they go through every minute of every day is an understatement.  Those who love them and care for them are in the same state of disability right there with them.  I feel trapped in my house.  How long before my “care givers” also feel trapped with me in my house.  I’ll ask them that very question.  So how about this new revelation…just mine…not yours.  I’m new to all of this disability activity.

When we enable those who are disabled…through proper care, better equipment, handicapped accommodations, and just the simplest of features that allow them to care for themselves, we not only make their life better, we make the lives of those who must assist them even better.  Right now I’m thinking about the burden I’m putting on my people, having to care for me.  I want to do more, I want them to do less.  If they don’t have to push me up that hill…I don’t want them to push me up that hill.  If they don’t have to put me in the shower and do those types of things, I don’t want them to put me in the shower and do those types of things.  It was second nature, in the hospital, for a team of care providers to do all the things.  But that’s a burden too big to put on those who are closest to you.  I’ll be thinking a lot about all of this during the next few weeks as we try to figure out what comes next.   You may think I’m so unselfish as to be thinking about those who are providing me care rather than thinking about myself…no…I’m pretty selfish here.  I’m trying to maximize my time to get better before I must start that slow crawl off towards the woods…

Wildness

"In Wildness is the Preservation of the World"

― Henry David Thoreau

At the risk of sounding maudlin, I was reunited with my dog yesterday.  She knows I'm gone on travel significantly--but 18 days was the longest stint I've ever been away from her.  I probably need her more than she needs me, dogs are resilient, me, less so. I didn't need to know exactly what she was thinking, or her inner dialogue, the smile on her face said everything. I'd like to think her inner dialogue was one of, “welcome home bitch”, as opposed to “don't leave me again you bastard.” It's hard to tell. She body slammed me several times.

Humans have always tried to write a dog's inner dialogue for them…some authors have achieved significantly more success in doing so.  Charles Schultz, remained absolutely silent, with Snoopy’s inner dialogue.  Probably a good idea.  Yet Snoopy spoke volumes to many generations.  But books have been written.  The books where it's hard to distinguish the dog's story from the human's story that are better than most include Merle’s Door, Marley and Me, and The Art of Racing in the Rain.   I think the authors were keen dog observers and were possibly more right than wrong.  Racing in the Rain, being fictional, it's harder to account for the author’s accuracy, but it felt like Enzo was talking to me. On the other hand,  a piece of rubbish, called “The Hidden Life of Dog’s”, fails so badly at providing a glimpse into a dog's life I can’t believe it was published.   The author claims she spent 10,000+ hours observing her dog's behavior.   I hesitate to mention it at all for fear one of you jackasses will dispute me and go out and buy it to prove me wrong.  Leave it on the shelf. 

The 10,000+ hours claim is truly special because that's the number of hours Malcom Gladwell loosely claimed in his book, “Blink" as the number necessary to become an expert in something.  In this case she failed to become an expert. Leave it alone.  It's rubbish.

One further observation about these three books is that the three dogs in the stories are all Golden Retrievers--Enzo, Marley, and Merle.   Despite claims showing the superior intellect of the Belgian Mallios or the Australian Shepard, the Golden Retriever seems to have earned a higher ranking in terms of their ability to epitomize “Good Boy” behavior. Evolutionary speaking, one might say the Golden is farthest from the wood line and closest to the fire. I believe I read somewhere that there is behavioral science that backs up this claim. Otherwise, I made up that incredible statistic based on my large sample size of three. As dogs go I'm happy with my math.  

Henry David Thoreau said, “In wildness is the preservation of the world”.  The fact that he made this lovely statement from his not so isolated cabin, next to a very popular pond, replete with hiking trails and weekend warriors, is not pertinent.  Almost certainly, dogs would have been present on these weekend sojourns to Thoreau’s  woodland (most likely off leash).  It's absent from the HDT record.  Knowing the seemingly pedantic nature of Thoreau’s  life, I postulate that he didn't even like dogs. Dogs are messy in almost every detail. They wouldn't fit his simple lifestyle. If there is an HDT historian out there please correct me.

Not wanting to let this drop yet, I think a Golden Retriever’s distance from wildness has tipped infinite--there’s no going back. I need a revision to Thoreau's statement.  Regardless how far out of the woods a dog has come to sit beside the fire with us, be they a Chinese Crested or a Siberian Husky, we gain immeasurably from our commune with this other species. HDT would never have experienced this…as he stared at the ants on his windowsill.  It's clear to me he would have had this total blind spot.  

In my modern mind I believe we will advance far more into the future communicating with the species around us then we will by observing them in the wild. When we communicate with these species, and only the Homo Sapien has the means to do so, we also have the function and utility to intervene. Granted most of the problems that will befall us we created--yet we will still have agency to correct most of them.  HDT was not wrong, he was just too late.  The necessary revision must now be,  “In Golden, is the preservation of the world.” I'm sure Enzo, Merle, and Marley are all smiling down at me for this revelation. 

Sorry for that diversion, I am indeed at home.  Thanks to everyone who provided both words of support and actions during this trying time. Eighteen days in the hospital and you would think I had some kind of world class disease to describe rather than what we knew on day one. I have a pinched nerve at the L45 root that keeps me from walking. How broken does that make me? After two weeks of PT, I still can't walk. There is no protocol to fix me.  I would have more success getting fixed if I was a car undergoing a recall.   This would occur, primarily because in the case of a car, the insurance is set up to protect the investment of the finance company.  It's actually insurance. In the case of health insurance, it's set up to protect the investment of the stockholders of the company. It's a platform set up to make money. It doesn't insure anything. It's a payment account where success comes from collecting more revenue in premiums than in claims being paid out.  

I'm not saying I'm special, but if this was actually insurance, and someone other than myself had a stake in keeping me on the road in order to keep me earning money, I'd be fixed by now. Instead after 18 days in the hospital I'm back at home in no better shape than I was when I left in the ambulance.  I'm probably in worse shape because both my mental and physical fitness have been pummeled inside a shitty health care system.

Since August 17th, everything has always been up to me.  Looking back, I'm not sure what I could have done differently other than keep my mouth shut in the ambulance. When the investigation by Inova Patient Services is complete, with regard to at least the first six days of my hospitalization, we will know if the system should have done something different.  If things had gone my way I would be a full-up round and back at work this coming Monday morning.  As it stands I've wasted 18 days and I can't wait to see the insurance bill.  Oh, and I do plan to be at work on Monday morning, except I’ll be in a wheelchair when I show up.

After leaving the hospital yesterday I drove straight to an outpatient pain clinic to do my first consultation with an outpatient doctor to hopefully schedule the second of the requisite, two,  cortisone epidurals, into my L45, to prove to my insurance company, and the potential surgeon who will propose a fix, that the impingement on the nerve is severe enough to warrant surgery.  This doctor I was seeing was able to review my MRI in advance and he knew before I rolled in the door that the impingement on the nerve was quite severe. We are going to move forward with the second cortisone injection (He uses Dex) he said almost immediately. He was quite clear that it is doubtful a second injection will provide any relief given the first one did absolutely dick (my word) and that I’ve been on a shit-ton of oral steroids the past week (my modifier).  It will take a bit to obtain pre-approval from my insurance company for him to do the injection, but that process has started and hopefully we will schedule the second injection within the next 10 days.  I will set up some more outpatient consultations today.  Those will include going to see the Inova specialists that were recommended by Inova.  And I will seek some alternative care--including an osteopath and a chiropractor.  Also, if I could just find the name and number of that acupuncturist I’ll call him too…It’s too bad I lost that guy's number CKW.

I have to wait for the wheelchair guy to show up at 10 am today.  Can you believe the wheelchair guy delivered the wrong wheelchair to Folsom Correctional?  It doesn’t fit. One thing that seems to be important is the fit of a wheelchair…if you are sitting in a wheelchair all day long, fit is everything.  The fact that this has happened does not bode well for any grace or redemption I might allow humanity right now.  I am happy to see my dog.

Since I am back home, I can finally begin to determine if all the problem solving, I did with my OT and PT to transform my residence into a perfectly handicapped accessible dominion was accurate. It was not. As much as I liked my OT and my PT the big question I have for them is have, they ever been in the field?  The solutions that they have proposed did not hold up in the real world. I've been home less than 24 hours and I'm already making major revisions. 

The first thing that is going is the commodes. Seriously?  These are so ridiculous it’s no wonder the insurance company will only pay for one.  They know these will be out by the curb before nightfall.  Sorry William, no handles for you on the shitters at my house.  I’ll take my chances getting up and down from the seat.  They are so small that I can only describe them as capable of only handing one job at a time.  You get to choose.  Number one or number two.  Not both.  Heaven forbid you need to yak at the same time.  This third option is far from available to you.  It’s going to get messy in your bathroom.  Throw them out.  Rubbish. Can’t use them.  Put handrails up…just like they have in handicapped bathrooms…and use the regular toilet.  Oh yeah, insurance doesn’t pay for the handrails.  

The second thing that goes is these additional walkers I purchased thinking I was outsmarting the insurance company.  They only pay for a wheelchair or a walker, not both.  Since a walker starts at about $25 and a wheelchair starts at $250 most people can make this simple decision to outsmart their insurance company on their own.    But again, the insurance company knows.  If they were to pay for the walker and then drove by the patient’s house.  The walker will be out front by the curb…this makes the insurance company sad and they got tired of being sad.  They know it’s a waste of money.  Waste of aluminum.  I’m glad aluminum isn’t a rare earth metal.  

Oh by the way, in my brilliance, I bought two.  Shows you how deeply I wanted to send a message to my insurance company…or listen to my OT and PT.   Both walkers will be in front of the house by evening.  Why do you ask?  Too wide…they will not fit in either of my bathrooms.  Also, they have these very nifty squeeze levers just beneath the hand holds.  They look like break levers.  In reality they are the levers you squeeze to fold up the walker.  I don’t want anything near my hands that I could confuse to be brake handles when shit’s going down.  Like a step hill.  The last thing you need to do is fold up the walker while trying to regain traction, in some type of down hill scenario.  Who the fuck was the human factors engineer during this design process?  Again, certainly no one who had a disability.

The third item that I am having a bit of success with is the shower bench. I went ahead and bought two of them.  Money is no object.  They cost about $35 a piece.   Both of them fit in my shower at a 90-degree angle to each other.  I took the sides and the backs off of them so only the bench remains.  I sat on them…and slid around the perimeter of the shower.  I think they will work just fine.  I’ll take a shower today and report back.  The only problem I can see is now I have two extra sides and two extra backs from these benches that I need to either store or get out of the way.  Everything is in the way of a wheelchair.  Get rid of all of this extraneous bullshit.  Put all this extra garbage out by the curb. 

Next up, grabbers. I bought a number of grabbers…and I’ve received several more in the mail.  Thanks George! These currently work for me.  The hard part is deciding which length of grabber to use.  I now have multiple grabbers in multiple lengths…including one that is 42 inches long.  I haven’t done the math yet, but I am barely strong enough to retrieve a 24 oz White Monster out of the refrigerator, at the length of 42 inches.  Ok, I did the math.  That’s like 5.25 ft-lbs at my wrist.  I’ll survive. Plus, beers are only 12 oz, so that’s just over 2.625 ft-lbs at my wrist. Let the day drinking begin.

I’m going to publish this entry and start my day.  Cheers’ everyone…day drinking starts now.  Also, something I haven't done in 18 days…