“Twenty Years a Slave”

My Struggle with Chronic Pain

From 1994-2014

With love, devotion and dedication to my wife Karen

From “The Princess Bride.”

Count Rugen: [admiring his torture contraption] Beautiful isn't it? It took me half a lifetime to invent it. I'm sure you've discovered my deep and abiding interest in pain. Presently I'm writing the definitive work on the subject, so I want you to be totally honest with me on how the machine makes you feel. This being our first try, I'll use the lowest setting.
[Count Rugen activates the water powered torture machine. Wesley writhes in great pain]
Count Rugen: [calmly] As you know, the concept of the suction pump is centuries old. Really that's all this is except that instead of sucking water, I'm sucking life. I've just sucked one year of your life away. I might one day go as high as five, but I really don't know what that would do to you. So, let's just start with what we have. What did this do to you? Tell me. And remember, this is for posterity so be honest. How do you feel?
[Wesley cries and moans in pain]
Count Rugen: Interesting.

* * *

Buttercup: You mock my pain.
Man in Black: Life is pain, Highness. Anyone who says differently is selling something.

Now, to the pain…

“No matter what precautions we take, no matter how well we have put together a good life, no matter how hard we have worked to be healthy, wealthy, comfortable with friends and family, and successful with our career — something will inevitably ruin it.”

Timothy Keller, 

“Walking with God through Pain and Suffering” 

I wouldn’t necessarily say, “inevitably ruin it” but April 2014 has the dubious distinction of marking two decades of living with significant pain every day.  It was April of 1994 when I fell mowing the lawn, starting a twenty-year odyssey of trying to diagnose, treat, and ultimately having to concede to unrelenting pain.

The lesson here is simple – don’t have a lawn.  The environmentalists were right – landscaping can be injurious to health.

I am writing about my experience for many reasons; to help put what has happened in perspective, to help others with similar experiences, to help explain to friends and family why I have acted abnormally at times over the past several years, to help caregivers and health care professionals understand how to treat pain sufferers better, and to record what happened before I completely forget!  On occasion opiates obscure observations.

I am not writing for sympathy, but for empathy.  Those close to me already feel bad enough knowing they can’t do anything for me.  Therefore, the last thing I want to do is make anyone feel worse, except for maybe Dan Callnon and a spinal surgeon who once thought I was little more than a drug addict.

If honest, I’m writing because I don’t want to travel this unwelcome journey alone.  Being in pain is lonely.  I’m thankful most of you have continued to walk along beside me, especially my primary caregiver and wife of forty years.  She has seen me as no one else has - at my very worst as a human being - and still decided to stay the course.   Those who have to observe the suffering of loved ones suffer differently but suffer nonetheless.

I should explain a little more why just falling on the lawn could trigger nuclear fusion.  Actually I fell twice within minutes, landing on the same tree stump cut level with the lawn.  It was wet with dew and my feet slipped and went sailing forward.  I landed square on my butt thus confirming one law of physics that the force of gravity is related to the mass of the attracting objects - and I have significant mass.

I wasn’t injured at the time of the fall other than embarrassment if neighbors saw me fall twice at the exact same spot while only navigating the perimeter of the lawn but once.  There was no way to pretend I meant to do it, but no need for theatrics either as nobody was watching.

Within a few weeks I began to feel a burning in my butt that nothing would soothe.  In fact, it was months before I connected the burning to the fall in an “ah-ha” moment.  Before then, the diagnosis was confusing and speculated to be everything from Asian flu to untreated childhood disease.   No doctor had experienced the symptoms of isolated burning related to a fall.

Unknown to me, the fall accelerated the arrival of congenital degenerative disc disease in my lower spine.  My lower spine was already weakened by injury experienced ten years earlier trying to watch a large screen TV while holding it in my arms.  The fall also brought to the surface progressive degenerative sensory nerve disease from butt to feet, characterized by the most awful sensation of burning from the inside out.

Stay with me on this, but assessing pain is like appraising wealth.   That is, no matter what your economic situation, they’re always those better off and worse off.  What one possesses never seems like enough.  Conversely, no matter how much pain you have it’s always too much.  Therefore, we should never minimize anyone’s pain experience.  For them, it is extreme.

We experience pain all of our lives but it usually resolves.  Pain is necessary to alert us to take action to prevent further injury.  Leprosy for example involves losing the ability to sense pain before permanent damage.  But no matter how necessary the body’s ability to sense and to interpret pain, pain can become debilitating when it doesn’t go away or significantly diminish in time.

“Who breaks the Law -’ said Moreau, taking his eyes off his victim and turning towards us. It seemed to me there was a touch of exultation in his voice. ‘- goes back to the House of Pain,’ they all clamored; ‘goes back to the House of Pain, O Master!”

― H.G. Wells, “The Island of Dr. Moreau”

1994-1996 inside my house of pain proved quite difficult.  The pain in my backside became concentrated on the left and it became increasingly difficult to sit at a desk or to drive.  I can’t do either twenty years later.  The burning engulfed my feet and made it impossible to wear shoes for a time.  I wore sandals (hard to find the right tie) and, on occasion, had to resort to slippers.  The looks I got in the hallway were interesting but polite.  

I tried every combination of chair, kneeling chair, cushion, wheelchair cushion, kneeling pad etc. without success or relief.   I used devices to raise and lower my computer, raise and lower my chair and raise and lower my ability to cope with the workplace environment (medications).  Meetings and travel became especially grueling marathons of sitting, standing and kneeling.

I eventually gave up on office chairs all together and leaned at a drafting table (years before standing desks were popular e.g. Don Rumsfeld) until I ruined my feet (I currently wear orthotics).  I finally looked into a ceiling track system used to lift immobile patients.  I envisioned being suspended on my stomach over a keyboard.  But I just couldn’t visualize the system’s propriety in a professional workplace setting.

I was also running out of diagnostics.  In 1996 we travelled to the Mayo Clinic in Scottsdale with high hopes of at least some insight coming out of their reputation for diagnosing difficult illnesses.   After a week spent redoing every test I already had done, they were not able to help.  It was the first time I broke down and wept.

In 1997 I gave up private flying.  I couldn’t sit well enough to fly safely.  The medications I was taking actually made it illegal to fly.  Interestingly a few years later the Federal Government crossed-checked their disability database with their pilot database - a lot of folks got grounded.  I’ve never found another avocation - unless you count grandchildren.

The rest of the 90’s were spent continuing to try and find some diagnosis and treatment.  At the same time I was trying to find a combination of medications to provide a modicum of relief with tolerable side effects.  Both efforts proved exhausting and fruitless.

Once I started working in Napa in 1996, it opened up the Bay Area medical community as a practical resource.  I wound up at the “Pacific Center for Pelvic Pain.”  This clinic was renowned for treatment of women who developed terribly complicated pain in the pelvic region as a result of childbirth.  The director of the facility was certain they could help me by aggressive stretching of the piriformis muscle.  The catch was they wanted access to the muscle group inter-anally.  Every week I jumped up in the stirrups and, well, you get the picture.

 From there I spent a lot of time at the “Spinal Diagnostics Clinic” in Daly City (South San Francisco).  The treatment was mainly steroid injections guided by a form of active x-ray called fluoroscopy.  When shots failed they called in a consulting physician to try prolotherapy.   Prolotherapy is a process where a needle is inserted in the problem area, deep enough to scratch a nearby bone and cause bleeding.  The bleeding triggers the body’s natural healing processes mainly by increasing blood flow in areas that don’t have a lot of blood flow normally.  Whereas the piriformis stretching was an invasive indignity, the prolotherapy was very painful, especially in my feet.

When the prolotherapy proved “pointless”, they got me set up with “The Bonati Institute” a supposedly groundbreaking clinic in Florida that was the first to use special arthroscopic tools for minimally invasive spinal surgery.  Two trips in 2000 and two surgeries later demonstrated they were nothing more than a sophisticated scam preying on the pain stricken and the elderly as long as they had medical insurance, much like my opinion of the Scottsdale Mayo Clinic.  Ask yourself, why Tampa Bay Florida and Scottsdale Arizona?

However, the referring clinic, Spinal Diagnostics, was then and remains a widely accepted vetted facility for the successful treatment of chronic spinal pain.  And I’m sure the Mayo Clinic, especially the original in Rochester, has helped thousands.  Things were getting ridiculous and the pain was getting worse – now, fun with chemistry.

During my journey I’ve met two classes of medical professionals, those who treat pain aggressively and those who hold the keys to the medicine chest very tightly.  I don’t suppose I blame the latter too much as the government has hammered many physicians for a being a little too loose with the juice or doctors may have relied on a patient not to abuse their trust and lost.

My primary caregiver, an osteopath, had a deeply personal experience that colored her prescribing practice.  She had a former patient commit suicide when he couldn’t get access to pain relief.  She wasn’t going to let it happen to me.  However, I never once contemplated suicide.  I did, erroneously, think I was going to die more than once, and often thought of strangling a few truly arrogant and indifferent doctors.  I stopped short of causing physical harm because I wasn’t sure what medical care I could get in prison.  Besides, in Texas I’d be on a fast track for permanent pain relief.

Drugs affect people very differently.  Why one drug will work for some but not for others spawned a pharmaceutical marketplace full of concoctions.  I quickly transitioned into either synthetic or actual narcotics.  The treatment plan was also complex.  Something slow acting or timed-released is needed to get a “maintenance” dose for regular relief.  Then a “break-through” med is needed for those times when you feel your body is having its own solar flare. Most of the effective medications for these two tasks don’t just slow down the pain, they also slow down many other functions that are needed to work at normal speed such as digestion (called constipation), urination (called sleep problems), sexual function, mental function and on and on.  Therefore remedies for the side effects are added to the treatment cocktail.

For many of the pain medications, the more you take the more you need to get the same relief.  And, at no time are you free of pain.  But with every drug taken you must read the fine print just as they say and we all ignore, thinking if some side effect or instruction was really important your doctor would surely say something.  But I learned we have the primary responsibility for our treatment as I experienced with a Fentanyl patch.

Fentanyl transdermal patches are used in chronic pain management. They work by releasing a powerful synthetic opioid into body fats, which then slowly release the drug into the bloodstream over 48 to 72 hours, allowing for long-lasting pain relief. Dosage is based on the size of the patch, as the absorption rate is constant at a constant skin temperature.

But, if you inadvertently raise the skin temperature, such as immersing in a hot tub or using an electric blanket, you can release a large quantity of a narcotic 50-100 times stronger on a dose-by-dose basis than morphine, very rapidly.  This happened one night as I slept snug in my e-blanket and woke up (thankfully) in the middle of the night with the room spinning and was unable to get up for a long time.  Read the insert. The warning is clear.

At one point the combination of medications lowered my blood pressure such that when I stood up I immediately passed out and fell (called a vasovagal syncope) striking my head on a metal chair, requiring a Frankenstein set of stitches on the side of my forehead.  I also struck my arm and when I awoke, the pain was such we thought I’d had a heart attack.  The 911 dispatcher sent several paramedics, firemen, and sheriffs (they have to rule out a possible assault).  The upside was we learned from one of the responders that hydrogen peroxide would clean up the blood if used quickly.

For our final chemistry experiment let’s get out the methadone.  Methadone is a synthetic opioid used mainly to assist with withdrawal from drugs such as heroin.  It has few side effects and contraindications and is very long lasting.  It worked great for me except for a few things.  First, the longer the use the greater the dose needed.  Second, insurance companies consider it the drug of last resort (indicating a desperate and declining condition) and deny coverage until you are off it for at least two years.  My withdrawal was unforgettable.  The first time I tried to stop, I couldn’t do it.  When forced, I repeatedly experienced the most profound sense of sadness and despair.  I cried profusely about everything and nothing.  I’ve never been to such a dark faraway place.  Once off, the urge to go back is only abated by the indelible memory of its truly dark side.

The early 2000’s were a distraction, dealing with body wear and tear unrelated to back pain.  Both rotator cuffs were operated on, one in 2000, one in 2004.  In between my gallbladder came galling (another congenital blessing).  As of this writing, I’ve been cut on a dozen times.  Hard to believe many people go through life never having anyone pull a knife on them.  The worst surgery was in 2008 and hopefully you’ll be patient and not read ahead.

When your primary pain medication prescriber starts saying, “you’ll never be entirely pain free”, you know that life has changed for you and for you in all alternate universes.  When I finally stabilized the level of pain enough to continue working, my bladder quit working.  This is a common side effect of long-term use of pain relievers (watch “House” Season 3, Episode 16 titled “Top Secret” when his Vicodin use became a urological emergency).

Doctors inserted a stimulator under the skin of my butt cheek to aid the bladder.  It tingled and tickled but I didn’t tinkle.  Out came the stimulator and in went a urinary catheter, a miserable process.  Very depressing to think of doing this for the rest of my life.  The doctor was so matter-of-fact in barking out, “the nurse will teach you all you need to know about self-catheterization.”  I opted for a second opinion.  Same result.  After another round of weeping I opted for less drugs and therefore more pain as a compromise to jump-start my plumbing.   The reamers sit under the sink.

2004 was a year of life-changing transition.  The back pain was increasing, the burning was out of control, business travel was nearly impossible, meetings were nightmarish and driving in pain while under significant medication was irresponsible.  I was also in a serious state of nausea that lasted through 2005, losing 20 pounds along the way.  Then I began to have mental lapses presumably from all the meds.  As a finance officer, these lapses became mistakes with many decimal places.  I couldn’t continue working so I gave up and went home in September 2004 at age 53, ten years after I first fell.

Note:  Leaving work finally gave me the time to finish my first screenplay regarding life after falling.  The anecdotes coalesced to become “The Legends of the Fall.”

In reality the balance of 2004 and 2005 were spent on the couch trying to shake the nausea.  I also didn’t realize all the mental toll trying to cope with chronic pain had taken over the last decade.  I was emotionally spent, physically exhausted and at a spiritual crossroads.  This became abundantly clear when the insurance road began to unfold in front of us.

I haven’t written yet about my spiritual condition during this time.  Being a Christian has been so integral to all of my adult life, I find it hard to look at it separate from myself.  I never lost faith in Christ during this time but I have changed much of my personal theology.  Many people think of God like an uber-rich relative.  If we have a financial need, they’re certainly able to meet that need.  But what do we think of them if the money doesn’t come?  I believe in healing miracles but admittedly don’t understand God’s distribution system of grace.

I feel compelled to confess I’ve not been a good example demonstrating Christian virtues while suffering.  The New Testament talks of sharing in Christ’s sufferings that we may also share in His glory.

Romans 8:17  “Now if we are children, then we are heirs—heirs of God and co-heirs with Christ, if indeed we share in his sufferings in order that we may also share in his glory.”

The Bible also talks of the circumstance where as a believer we are blessed to be comforted by Him in our sufferings.

2 Corinthians 1:5  “For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ.”

But I am not like the Apostle Paul who prayed to suffer as Christ suffered:

Philippians 3:10  “I want to know Christ—yes, to know the power of his resurrection and participation in his sufferings, becoming like him in his death,”

I have not yet rejoiced as the Apostle Peter exhorts us:

1 Peter 4:13  “But rejoice inasmuch as you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed.”

Yes I have felt Christ’s comfort at times.  But I have found no value in pain.  Pain has not made me a better person in any way that I can tell.  I’m certainly not more Christ-like.  I hate being in pain.  Pain has taken from me most of what Karen and I enjoyed together in life.  I have not experienced any particular insights, found meaning or understand pain better.  Pain has exorcised us from church life so central to our married life all these years.

“Pain is beyond reason, an obliterating giant stupidity to which all your history of jokes and nuance and ideas and caresses is nothing, simply nothing.”

GLEN DUNCAN, A Day and a Night and a Day

I never met anyone that can’t sit at all unless wheelchair bound.  I never met anyone who knew of anyone that couldn’t sit.  As such, most people can’t relate well or have a hard time understanding.  It’s always been interesting to me that even doctors’ waiting and treatment rooms do not accommodate people that can’t sit.

It’s hard to turn down social invites and family functions such as graduations etc. when you can tell folks just don’t believe you’re truly disabled.  For years I tried to go and stand in the back until that was no longer an option.  I had to get used to being the missing uncle or church backslider.

I do know of two blessings.  Forced retirement while still relatively young has given me the joy of being with my grandchildren nearly all the time.  I love being a grandparent and desire to be a good one.  However, pain prevents me from holding, carrying or wrestling with them.  And yes, Grampa gets grouchy at times.

The other “blessing” for lack of a better word is that I have a daughter who, with terrible irony, also fell and snapped her tailbone.  A different injury, but a life of pain none the less.  The result has been awful for her at such a young age.  But I do understand some of her struggles and have tried with limited success to comfort her from my experience.

2 Corinthians 1:3,4  “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort;
Who comforts us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God.”

Basically, added to my pain is the guilt that I have not suffered nobly.

“Fatigue (pain) makes cowards of us all.” – Vince Lombardi

I have not kissed my chains nor been able to model scripture’s instruction for those who suffer.   Sometimes I feel as if I have refused God’s comfort at times because I have not accepted that, in this life, I will spend each day in some degree of most unwelcome pain.

Psalm 77:2  “In the day of my trouble I sought the Lord: my sore ran in the night, and ceased not: my soul refused to be comforted.”

Even Christ prayed that He wouldn’t have to suffer the cross yet ultimately accepted God’s will.  My sufferings in no way compare to the horror of Christ’s experience.  But I also don’t believe that my pain is/was God’s plan.  It was caused by an accident, an accident that God allowed, but an accident just the same.  The miracles that we have seen are the way He has subsequently provided for our needs when I no longer could.

Now for the real suffering – applying for disability insurance.

Because I was so sick and emotionally fragile right after I left work, the bureaucratic process of applying for Social Security disability fell almost entirely upon Karen.  When I left work I never believed or counted on being accepted for any kind of disability, public or private.  I struggled with how hard it would be to convince the authorities that my pain was truly disabling.  We did have reasonable savings but we didn’t have enough yet to retire completely.  In addition to income, we needed medical coverage. The only place available to me was Medicare if I was judged disabled.

The gauntlet that is SS disability will, by itself, leave you disabled when run completely.  The paperwork, medical records, examinations, regular rejections, resubmissions, hearings, attorneys and so on can’t be successfully negotiated if you’re sick.  You must have someone that is bright, steeled for the absurd and a true believer in your cause in your corner as Karen was.  You must have the support and commitment of your primary care doctor because they will be assailed, questioned and given their own paperwork mountain.  And finally, you must have patience.  What seemed to help in my case was interesting.  Even with the mountain of medical records, it seemed to mean more to the judge that presided over the final hearing that:

I was a veteran and had served my country for several years,
I left my career at the height of my earnings potential,
I gave up flying and sold my airplane,
He would never continue working if it meant he had to kneel all day.

The only person who would do such things was either truly disabled or insane.  Since Government psychiatrists found me to be sane, then logic dictated that I was disabled.   After two years I now had health insurance and a very modest but welcomed stipend.

When I was a young man I met a deaf insurance salesman.  He became a friend, confidant and Christian brother.  He convinced me in my early 30s that I was overwhelmingly more likely to become disabled than to die prematurely.  So I bought a small yet expensive personal disability policy from Standard.  They are a quality company and after reasonable due diligence they came through.

The last piece of our pre-65 income possibilities was an employer disability policy from UNUM.  First of all, I’ve worked in the construction industry since 1979.  I never worked for a company with disability coverage until my last employer.  I never even thought about this policy for several reasons.  First, the fine print was amazingly obtuse.  Second, UNUM had a terrible reputation of litigation, delay and obstruction in considering coverage.

However, several things worked in our favor.  UNUM had just settled a massive lawsuit with the Government and agreed to revamp its underwriting and claims procedures.  They were still a bit raw from having a few financial fingernails pulled out.  Add to that the SSA had made a “fully favorable” disability determination.  How, in good faith, was UNUM going to find differently?  Even Standard Insurance early on came along side.  In the construction industry it is unheard of to offer disability.  In the insurance industry it was unheard of for UNUM to not go to court.

I now had Medicare and a sufficient level of income, at least until I reached 65.  In spite of how I might have felt about Christ’s purpose for my life, the following was undeniable.

1 Timothy 6:17 “Command those who are rich in this present world not to be arrogant nor to put their hope in wealth, which is so uncertain, but to put their hope in God, who richly provides us with everything for our enjoyment.”

A modern miracle and Karen did all the paperwork.  The irony is that we now had to find health insurance for her as my employer’s insurance was expiring after being extended twice by my benevolent former boss.

This epistle is beginning to read like a sermon that’s running long.  So I’ll not tarry much longer.  Karen, please play “Something Softly” as I hurry.

From 2005 to 2006 we began to look for places to live where our grown children could find better opportunities than in a collapsing California economy.  It was their idea, but because of being at home disabled, we had the time to devote to the pursuit that wouldn’t have happened otherwise.

We found Austin Texas, or it found us.  On the eve of moving my doctors concluded that I would need the gold standard of potential lumbar pain relief, spinal decompression and fusion.  But it would have to wait.

After an arduous move I finally was scheduled for surgery in October of 2008.  I was desperate and it was a desperate measure.  Yet the promise held that post surgery I would be able to hold my soon to be born grandchildren.  On the eve of surgery one of the doctors told me when I woke up, I would know that I’d had major surgery.  Another doctor told me that since I was on strong narcotics that when I woke up I would also be experiencing pain as never before.   Okay, so I was a little apprehensive.

The operation is done is two stages.  First lying on your back, one surgeon makes an incision starting at the belly button slicing upwards a distance determined by how many discs will be decompressed and fused.  At the last minute they decided to work on only one disc instead of two.  So he made a pretty good size stab, big enough for him to be able to move several internal organs to the side, allowing the spinal surgeon good access to the degenerative discs to clean them out and implant synthetic material in the space to eventually graft or fuse.

Then, once you’re medium rare, they flip you over and open up the back so they can put in metal scaffolding to keep the area decompressed.  When you wake, you have incisions both front and back so you sort of lay on your side in somewhat of a fetal position.  You find one tube coming out of the middle of your back to improve drainage and to help prevent infection.  You have another tube coming out of the front that also improves drainage and helps prevent infection since you can’t get up and use the bathroom yet.

Two IVs are also at work.  One is filled with an antibiotic to guard against systemic infection and the other is filled with a pain reliever to guard against climbing the walls.  Soon after waking I broke out in a whole body rash, a clear allergic reaction to something.  Since they weren’t sure what I was allergic to they pulled both IVs.  No more intravenous pain relief so out came the morphine injections.  It turned out that in spite of an operating table test, I was allergic to the antibiotic Ancef from the Penicillin family.  My records plainly showed that I have always been allergic to Penicillin.

It was a hellish week in the hospital, incredible pain and burning, whole body rash, no food but crackers, and I lost control of my bowels.  The pathetic prophetic doctor was right; I knew I’d had major surgery.  But I was still hopeful from all the testimonies I’d heard about the success of this surgery returning people to normal lives.  So they yanked all the catheters, rolled me to the door in a gurney, I crawled to lie down on the floor of our van and we rambled home to await the outcome.

In spite of angelic care and following the post-surgery protocol to the letter, the burning never subsided and I wound up in the emergency room one month later unable to cope with the pain.  It happened to be Thanksgiving 2008.  Boy, was the on-call spinal surgeon mad!  But they finally pumped enough stuff in me to go to sleep and we eventually went home where I slept for a week.  Sleep then and now is the only true escape from pain.

The burning brought me to Capitol Pain Institute and Dr. Sanford Matthew Shocket.  He convinced me to try a spinal stimulator to give my brain something new to be distracted by than the burning.  I was very skeptical not only because of the earlier failure of the bladder stimulator but also because my daughter had a trial spinal stimulator for pain relief without success.  But out came the “trust” word.  He said, trust me, turn it on for one month at as high a setting as you can stand and leave it.  I was desperate and had no other options so I did what he asked.  Eventually, it started to work and I continue to use it to this day.

Dr. Schocket also got my medications under control and trusted me to use them wisely.  Hmm, I trusted him and he trusts me?  How novel.  I also get scheduled bi-lateral lumbar nerve root blocks to keep the inflammation knocked down and the pain better under control.

My neurologist confirmed my nerve degeneration is continuing so I don’t know what the future holds.   For now the disease has only involved sensory nerves, so other than the burning and numbness the only other symptom is all hair has fallen out of my legs.  What a blessing to only shave my armpits.

My pain is mostly controllable as long as I don’t try any stupid pet tricks.  I still can’t drive or sit, meaning no church and no travel.  When we moved to Texas we planned for regular trips back to California to see family.  We did try going by train once.  But that romantic notion is DOA; what a miserable experience.

Presently, Karen chauffeurs me while I lie on a mattress in the back of the van.  I can’t lift or hold my grandchildren.   I use kneepads to play at their level in spite of the congenital arthritis that has now beset head and shoulders knees and toes.  The psoriasis on my knees is not painful but the kneepads do pull off the excess skin produced by the autoimmune condition.

Then finally there’s the escape of sleep.  For much of the last twenty years, good sleep has been elusive.  The reasons are manifold, too much pain, too little urination, drug interactions, lack of exercise or maybe just growing older.  Many days have been spent exhausted, needing to nap at least twice a day.  Good sleep is paramount to coping with chronic pain.  Yes there are and I’ve tried many sleep aids but it’s a two-edged sword.  One, sleep meds have their own side effects; two, many folks have died from a lethal cocktail of pain relievers, anti-depressants and sleep medications.  It’s called respiratory failure.  Turns out I had an unknown and long undiagnosed condition called sleep apnea, my final congenital complication.

It appears that my uvula hangs too far back in my throat.  At night when the neck muscles relax, it slips further back, blocking my airway decreasing breathing and therefore blood flow to the brain.  At its worse, you stop breathing for extended periods until the brain figures it out and wakes you up.  If you’re further sedated, you might never wake up.

This condition was self-diagnosed using the internet after experiencing debilitating headaches for months even though the internet is often a terrible place for reliable medical information.  I still had to go through the medical communities’ gauntlet of other causes of the headaches including brain cancer until I begged for a sleep study that proved determinative.  

The study showed that I regularly stop breathing dozens of times an hour all night.  It remains unclear how long this had been going on and what part it played in my health and well-being.  I now sleep with a CPAP (continuous positive airway pressure) machine.  I use what is called a nasal pillow augmented with a chinstrap to keep my mouth closed (I know what you’re thinking).   The actual air handler sits on my nightstand.  It’s a medical necessity.

As my story comes to a close, I cope with my pain in a multi-faceted way.  To illustrate this let me describe my day.  When I awake, I turn on the spinal stimulator, rub some steroid cream on my psoriatic knees, put on my knee brace or knee pads for the arthritis, take my first daily dose of back pain reliever, nerve pain reliever and anti-depressant.  Then I slip on my back brace so it can hold ice on my back while Karen and I have coffee on the couch, read our devotions and pray for those we love.

I no longer have to add methadone to my routine or take any laxatives to move things along.  During the day I continue my back and nerve pain meds, add over the counter anti-inflammatory meds as needed, wear a back brace as needed and apply ice as needed.  Texas law requires me to see my doctor once a month to evaluate the use of narcotics and to take random drug tests to screen for abuse or use of unauthorized meds or dosages.  I get quarterly steroid injections and regular monitoring of my nerve and back degeneration to mitigate my worsening condition as much as possible.

Karen and I both need and add time with our grandchildren for morale, joy, encouragement, sense of contribution and being needed, fun and laughter.  They are our salvation, small s.

My evenings include more steroid cream for the knees, removal of braces, turning off my spinal stimulator, getting my pain level down as much as possible so I can get to sleep, although a sleep aid is needed.  Then the chinstrap goes on, earplugs in, CPAP on, noise machine on, optional sleep mask, lights out.

In closing, since April of 1994 I have been on a quest to escape pain.  This quest began after a couple of falls in my backyard that initiated a burning pain in my left buttock.  Twenty years later I still have unrelenting pain.

My quest has taken me all throughout the medical system and has crisscrossed the United States.   I have endured every manner of diagnostics, both invasive and non-invasive; I have seen both compassionate and indifferent doctors.  I have lain awake enduring arthroscopic back surgeries and subsequent recoveries.  I’ve spent years getting injections in my back, butt and feet and hoped painful prolotherapy might prove helpful.  I’ve had dozens of nerve root blocks as well as an epidural block.

I have lain in stirrups enduring inter-anal piriformis stretching.  I have been the holistic route ingesting seaweed, grape seed, silver drops, wearing magnets and many other well-intentioned remedies.  I have worn feet stretching boots and shoe inserts, taken acupuncture, and have had ultrasound and infrasound treatments.  I spent a week in the Mayo Clinic given every test imaginable.  I have tried to use every chair and pad conceivable.  I’ve ingested every manner of pain relievers to include methadone with every side effect including urinary, digestive and sexual.  I’ve taken anti-depressants, mood elevators, laxatives and on and on.

I have seen osteopaths, orthopedic surgeons, neurologists, rheumatologists, cardiologists, and brain surgeons.  I have had numerous MRIs, CT Scans, X-Rays, Spinal Taps, EMGs, EEGs, and EKGs.  I have attended countless physical therapy sessions.  I could go on and on.  Actually I have.

The point is I’ve done everything to escape pain but it’s still here like Paul’s thorn in the flesh.  For Paul, God’s grace was sufficient for comfort.  For Job, God’s sovereignty was all the answer he ever got.

For me, my wife has been my anchor and my coping mechanism.  She’s held it together although sometimes by a thread when she had every right to break down.  Her health did break down at one very low point as she suffered terribly from Graves thyroid disease and Graves’ eye disease, we think brought on by the stress of our situation and watching me suffer and worry.  Ever had your eyeballs removed during surgery then put back?  What sorrow and guilt to think my reactions to pain contributed to her suffering!

Karen is the only person that has watched me completely break down emotionally more than once.  I’ve wept so hard and so out of control over the pain, especially the burning, and the hopelessness of relief that I wasn’t sure I’d regain control.  Pain stripped away the veneer of diplomacy and social acceptability and she witnessed, at times, a very different man than she married - but she still cares for me and I for her.

The English “philosopher” Manfred Mann put it this way:

Now we're together nearly every single day

Singin', "Do wah diddy diddy, dum diddy do"

We're so happy and that's how we're gonna stay

Singin', "Do wah diddy diddy, dum diddy do"

We’ve spent nearly every day together since 2004 and we haven’t grown tired of each other.  We do everything, go everywhere, share everything and talk about everything and everyone together (without ever gossiping).  If my story contains a God-given miracle, then this is it.

1 Corinthians 13:7-8a (Love) bears all things, believes all things, hopes all things, endures all things.  Love never fails…

One last thought,

“When we are suddenly released from an acute absorbing bodily pain, our heart and senses leap out in new freedom; we think even the noise of streets harmonious, and are ready to hug the tradesman who is wrapping up our change.”

- GEORGE ELIOT, Janet's Repentance

When therefore do Karen and I get to experience this release?

Revelation 21:4

4 ‘He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.”

Revelation 22:20

20 He who testifies to these things says, “Yes, I am coming soon.”
Amen. Come, Lord Jesus.

Our final blessing is to be fulfilled with Jesus returning soon.

Amen and Amen.

Epilogue

“That's the thing about pain.... It demands to be felt.”

- JOHN GREEN, The Fault in Our Stars

I wonder what would’ve happened these last twenty years if I’d not tried to aggressively treat my pain, just dealt with it like an amputation?  Early on a well-known sports medicine physician that treated Olympic athletes saw me.  After waiting in a dark miniscule room for over an hour for his holiness, he pronounced, “ischial bursitis and it’s not treatable – goodbye.”  It wasn’t ischial bursitis, but no one would ever know for sure what it was.

I do know my pain is worse from overly aggressive treatment such as overuse of TENS units, ultrasound and invasive questionable procedures such as prolotherapy.  It’s challenging even for the most well-intentioned physician to “first do no harm” when you don’t know for sure what you’re treating.  I’ve had unnecessary surgeries and unavoidable surgeries that left me with different pain even harder to treat.

Yet, I am thankful for access to medical care in the U.S.  We are impatient with even modest delays when across the ocean many wait weeks for office visits, months for procedures and years for surgeries.  It’s sad for all when a doctor realizes they can’t help when help is why they went into debt.  But the system has limitations.  We’ve miraculous medicines and machines and devoted medical professionals, but they’re not miracle workers.  Treatment requires trust, mutual respect and open dialog to have a chance.  It doesn’t help when a physician glances at you and declares you’re a drug addict.

I am relieved for the safety net of Medicare.  Even more so for those few physicians that still accept Medicare given the absurdly small payments, even though Medicare does keep the cost of miracles down to earth.

Finally, I’m once again grateful for my support system - without it the pain would’ve already won.  Glad for my wife, for the quality of her care and depth of sacrifice.  My pain has also defined her life.  I’m thankful for my children and their spouses insuring I don’t travel pain’s path alone.  After all, that’s why I wrote this story and invited you along.  How I wish I could stand in your shoes for even one day and for you to never stand in mine.