Torture, water-boarding and more: Part 2

This story began in Part 1 with how I landed at The Balance Center on the last day of the year for the conclusion of my hearing and vestibular system testing.  That was yesterday and I am still recovering . . .

My mood was in a major funk as I was running late for my appointment (struggling to function), trying to hold off any tic attacks whilst still getting ready and out the door.  I am back into a 2-part fractionated sleep schedule to try and manage:  1) an increase in the nightly and morning convulsive episodes and 2) getting enough sleep.  Usually there are at least 2 nights when the number of hours of unconsciousness barely exceeds FOUR; the night before the appointment was one of them!  Eeee gads.  But by the grace of God have I survived to tell the story so let us continue!

A very sweet technician named “M” was assigned to walk me through the procedures to be performed in three rooms, each equipped with various test equipment, computers, and some funny-looking masks.  I’ll include some stock photos here to bring you into my world:

The Balance Center, vestibular, training, testing, dizziness, therapy, light-headed, physical therapy, rehabilitation, audiology, mask

Generally each part of each test was completed three times.  Most of the time “M” warned me about the challenge that was about to happen (except for the water-boarding shock that came later, unfortunately!).  In the first room I stepped barefoot onto a cold, 3-walled compartment in which the floor moved independently of the walls that also moved.  She harnessed me in with the same number of straps usually employed with bungee jumping!  I remembered hearing professional dancers talk about focusing on one object as they spun around doing pirouettes so I decided that would be my strategy all afternoon to avoid up-chucking early in the game.  It helped for a little while and I guess I did o.k. during phase 2 (with phase 1 being the audiology testing in October) although the dizziness, uneasiness, queasiness, and feeling of being lost-in-space began quickly.  She allowed me to rest a short while afterwards and for this I was exceedingly grateful.  My feet eventually started to warm up  . . .

brain testing, balance testing, vestibular, rehabilitation, Balance Center, dizziness, light headedness, physical therapy, audiology, ENTI hobbled to the next room labeled, “Rotational Chair.”  Holy crap.  I was doomed!  I never liked the Merry-Go-Round at the playground as a kid and now was the time to find out why.  You know what happens to the kids too scared to jump off, right?  This is probably why The Balance Center instructs you to eat only oatmeal in the hours before your appointment!  So with fear and trembling I stepped into what looked like the anti-gravity room at the Nassau Space Center.  The walls and chair in the “space capsule” were black, equipped with even more straps that comprised the harness and seat belt configuration.  This time my head was restrained as well with the mask pictured above affixed to my head.  Then she closed the door.  I was all alone in the darkness.

I wondered about trace specks of mold, fragrance, and other irritants from the travelers who had gone before me.  Should I have been wearing my carbon mask all along to avoid trace exposures?  My mind was so overwhelmed with the test procedures that day that I would not pull it out until the dire end.  For now, I was to spin in circles and watch the little red dot ahead of me, make the line straight using the “Play Station” controllers in each hand, and hope that the fraction of light peeking through the hinge of the door would re-orient me enough to go on . . .  My defenses were rapidly breaking down.

balance-testing rotational chair

“M” asked me probably 75 questions total that afternoon, spread throughout all of the test procedures.  Had I ever fallen?  Hit my head?  Gotten dizzy?  What about headaches?  Migraines?  Chemical exposures?  You get the idea.  In the chair of the Black Hole, those questions made it impossible to focus enough to use the ballerina strategy to keep my act together.  The nausea crept up inside me then miraculously never exceeded critical mass to prompt a return of my breakfast.  (I took the nausea medication I had with me later anyways!  It was the least I could do to calm things down!)  I am now getting dizzy and light headed just writing about this experience.

When “M” opened the Magic Door and set me free from my restraint, I slumped forward with my head plunging into my hands.  What the heck was happening to me?  Low grade tic attacks erupted.  I felt listless, unbalanced, disoriented, exhausted, sideways, unsteady even in my seat, like I was struggling to keep breathing (as if someone had pushed the air out of my chest), with increased ringing in my ears and a knife-like sub-occipital headache.  The sinus headache had returned as a bonus.  I asked if I could lie down.  She agreed since there would be supine positioning in the next room and testing anyways.  Great.  I strained to hold myself together long enough to make it to the torture chamber just around the corner . . .

balance testing, vestibular, lights, flashing lights, therapy, audiology, Balance Center, testing, dizziness, light headed, head injury, concussions

The usual nightmare met me on that treatment table.  Violent convulsive episodes displayed their wretched glory with deep vocalizations that I could not control.  On and on with no end in sight they came as I lain face down in the position I have discovered that causes the least amount of trauma to my banging neck and head.  My legs were cold.  My hands were cold.  The room was darkened yet the bright desk lamp next to the technician’s computer was too bright for my eyes just 4 feet away.  I struggled to raise my arm to shield my eyes and held on for dear life.

Why was I going through all of this anyways?  Would all of this trauma really yield anything useful beyond yet another human version of a “lab rat” experiment to tell me that something was very, very wrong.  NO KIDDING SOMETHING IS WRONG!!!  I asked for my purse and awkwardly donned my face-mask when I could get my hands to work together enough to do so.  Probably 20 minutes passed before the overt symptoms stopped:  the ones you can see, that is!  Inside I was seemingly beyond repair.  This was going to take a long time from which to recover.  I wept.  The more I write about it, the more I experience a slight flashback of symptoms.  I will pause here for a little cry.  More later . . .

Continued in Part 3

 

Be true to who you are

This song will make the point of this post more clear.  Have fun as you listen to this upbeat tune from the Beach Boys!

<img class=”alignnone size-full wp-image-4432″ src=”https://justjuliewrites.files.wordpress.com/2015/12/beach-boys.jpg” alt=”Beach Boys” width=”480″ height=”360″

“Just like you would to your girl or guy.  Be true to your school.  Rah rah, shish boom bah!”  And Gentle Readers I submit that this also applies to US TOO!

In a recent trip to the Emergency Room (yeah same story, different day) I was received by the male nurse who did my initial evaluation less than a month ago.  I remembered the gooley, inappropriate look on his face as he handed me a hospital gown and asked me to change clothes then waited for me to do so right in front of him.  He had the gown opened just below his eye level.  His eyes were staring at my chest.  The expression on his face was blank.  And I didn’t buy it one bit.

I really don’t know how I had the presence of mind in the middle of non-stop convulsive episodes and a struggle to breathe to ask him for some privacy.  He paused for a moment then looked up at me.  “Of course,” he said or something similar and handed me the gown.  He pulled the hospital curtain and continued typing on the portable computer just beyond what is also called the “privacy curtain.”  My beloved husband, Steve, assisted me in changing my clothing thank you very much!  My dignity in an extreme moment of vulnerability was spared.  Thank you Lord.

I know that this nurse is a medical professional.  He has probably seen thousands of naked bodies and women a lot better endowed than yours truly.  In a time of crisis, the medical professional assists a patient in changing clothes as a part of the procedures.  Yeah but they are not to do so while acting in an unprofessional manner.  He was not going to help me in that moment unless I was dead!  Period!  The rest of that visit went more cordially and more appropriately.  I changed clothing on my own after the assessments and treatments were completed about four hours later, thank you very much.

Flash forward to this past Tuesday night.  Mr. un-Wonderful was working the p.m. shift again in the ER and begins his nursing evaluation.  I cringe.  This time it was a petite, blonde nurse co-worker who asked me to donn a hospital gown.  The dude was within arm’s reach of the gurney upon which I am lying.  I felt his eyes upon me.  In that moment, shaking violently with convulsive episodes and struggling to breathe, I was glad that I had been trained as an occupational therapist and muttered as much.  As such I know more ways to dress and undress than the average person with virtually any disability that you can imagine.  I laid the gown over my clothing, covering my personhood, and struggled then succeeded to doff my own clothing and get into the approved garb.  Steve might have helped some; I don’t know as my eyes were closed.  The nurse  wasn’t happy but I was.  And in doing my own thingy, I remained true to myself.

The rest of the ER visit went as they usually do.  After about 750 cc of fluids, IV Rocephin, and a shot of Morphine (my first ever!) I was feeling better.  While the second bag of IV fluids diminished the severity of the episodes, the tremulous part of the episodes didn’t stop until after the Rocephin.  And that improvement lasted for about a day with barely a tic attack here and there.  Yeah God!

Now I am in the aftermath of trying to decide what to do.  The prescription Keflex (same cephalosporin drug class as Rocephin) has begun irritating my stomach.  While there were findings of a urinary tract infection in the ER, the urine culture was negative.  There are still fewer and less intense episodes overall:  the hell that plagues my life and keeps me clinging to the Cross of Christ for hours every day.  My Doc says to stop the Keflex.  I held the herbal Biocidin (anti-microbial) after the ER visit to avoid an interaction with the new prescription drug.  What shall I do now?  Hmmmmmmm.

I know what my gut is telling me to do:  be true to myself.  I will pray for the Lord to guide my very wise husband and me.  I will strive to be respectful to those trying to care for me with as much courtesy as I can muster in any given situation while protecting my own privacy and integrity when it is all that I have.  In due time we will figure all of this out and be much better for the journey the Lord has allowed for His purposes and our good.  Of this I am still sure.

And if anyone tries to tear down my alma matter, Mott High School and the mighty Marauders, well then I will be “true to my school” as well.  “Go team,” I will shout on high!   Lord willing, we are going to win!  JJ

 

 

The liver that got away

Roger looked more like a tall, lanky college student than a young adult with schizophrenia.  He was also smart:  well-studied as if to be a medical school student long before the days where WebMD could make the rest of us stand out from our peers on a particular topic of interest.  There was one problem with Roger’s course of study, however.  I met him shortly after what could have been his second fatal mistake.

Roger believed that removal of his liver would cure his schizophrenia.  Yes, truly, and he would talk about it with a straight face in earnest to his psychiatrist.  Roger had poured over medical books, secured all the tools and supplies of a typical surgical suite, and attempted a procedure at home in the past.  When he could not control the bleeding at some point during the procedure he called the paramedics and was rushed to a local hospital.  They patched him up and transferred him to the mental health unit where he stayed until his psychiatric medication could be “adjusted.”

Within a short time after discharge Roger re-doubled his efforts.  He gathered more supplies for a second attempt at a total liver resection.  Somehow he never read that the liver is a vital organ and that he would die if he ever succeeded.  And who knows where he found sterile drapings, forceps, lancets, and such in the days long before Amazon and Medline?  What he did not expect the second time was the intolerable pain he would experience as he got deeper into his surgery.  He was alone and got scared.  Again he called the paramedics, was hospitalized, and landed on the mental health unit.

I worked as an occupational therapist on that unit with the even lower functioning clients than Roger.  While he was not one of my patients, his notoriety was the talk of the nursing station.  What incredible bravery it would take to operate on oneself with what, a handheld mirror?  I mean, how exactly did he do it?  I think I recall that he was discharged to a residential facility after his hospital stay in an effort to preserve his life lest he make a third attempt.  The delusion that excision of his liver could cure his mental illness was simply too strong to believe that he would ever give up his theory until he died trying to make it so.

And so here I find myself four days before my own surgical procedure, banking on a theory that excision of two teeth will save my own life.  Have I too succumbed to the “Roger effect?”  When contrasted to sick thinking, we all like to think that ours is different.  After all, I have done my research and can find clinical and anecdotal evidence that what I have asked an oral surgeon to do will cure the worst of my ills.  Dr. R doesn’t agree with my suppositions (a biologic dentist did!) yet is willing to proceed to diminish years of dental pain AND after having required extraordinary precautionary measures!  Lord willing all will be completed on Thursday, March 26th:  my spirit will no longer be crushed with the virtual hell that has left me bedridden most days.  (See this blog for details: https://justjuliewrites.com/2015/03/01/only-my-potato-chips-remain-crushed-today/)

Looking back to my days working in mental health I realized that I have come a long way in my view of the world.  Today I am more willing to ask the tough questions of life than in the past.  I see that I am not so different from many of the patients who landed in a “psych ward.”  By the grace of God I did not have to be admitted or committed when my despair exceeded my ability to cope.  Somehow the Lord provided the hope, the help, the peace to carry on until the day when the pain was no longer unbearable.  Gratefully, much emotional pain has left my life for good.  Much joy has taken it’s place even in the face of this horrible illness.  My internal joy is no longer measured by my circumstances; He has allowed me to overcome immeasurable desperation.  I believe that things will begin to turnaround this week.  This week people!

If he is still alive today, I do hope that Roger has found some peace with his struggles.  Wherever you are today dear one, I pray these words from the Lord for you and your loved ones.  Sometimes letting go of that one thing that got away in our lives is the very thing that brings us to all that we seek:  the joy that passes all understanding.

John 16:33 (NIV)

33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”

John 16.33

Only my potato chips remain crushed today

Who knew that finely crushed, Unsalted Kettle Potato Chips would be like a salve to my wounded frame today?  In the spirit of my previous foodie post, I must say that finely crushed chips make my creamy beef stew-ish soup puree quite special.  Since there are potato chips in my belly, life will go on after all!

Yes, there is other good news after enduring 36-hours of hell, ending about an hour ago:  we believe we have identified the trifecta-root cause of much of my illness.  However, unlike a horserace where a bet on a trifecta identifies win, place, or show, we are not sure of the order of these little fillies:

  1. Two infected teeth with root canals
  2. Inflammation secondary to the infection and
  3. Dental galvanism from dissimilar metals in the crowns of the root-canaled teeth.

Now we recognize that while we certainly won’t know the exact cause until the teeth are extracted and I have treated the infection, if needed.  I am on a waiting list for a local surgeon after a trip to see a qualified biologic dentist out-of-state resulted in being passed on to someone else equally far from home.  My husband has led us to the decision to find someone else locally; I am on a waiting list to have my appointment moved up from April 2nd with the best local oral surgeon.  Those Gentle Readers who have followed me for awhile know that I have thought before that we found the “root cause” of everything.  The “it” still could be complicated by underlying Lyme disease, mold neurotoxins and the definite mercury toxicity fueling it all.  Yet one thing is now clear:  these teeth still have to come out!

Here’s a brief summary of these three new factors in my own words:

1.  When a person has a root canal procedure, a dead tooth is left behind.  The primary root canals consisting of nerve tissue and blood are scraped out and a rubber-like substance called gutta percha is stuffed into the remaining cavity.  While the opening is treated with an antiseptic, no one can ever know for sure if any secondary root canals were left un-cleaned and untreated.  Any remaining nerve and blood tissues dies and can provide food for aerobic and anaerobic bacteria.

Between the root canal channel and the outer enamel of the tooth is the dentin, consisting of 3 miles of dentil tubules.  These are too numerous to be completely sterilized before placement of the gutta percha.  Thus there is a possibility of infection seeping into the dentil tubules.  When a tooth is healthy, all of the dental tissues are washed with blood but this is no longer possible with the severing of the blood vessels during the root canal procedure.  However, if the infection grows, the bacteria can eventually seep from it’s hidden little factory in the tubules into the jaw bone and surrounding blood supply thus potentially affecting the mouth and rest of the body.  It is well-recognized that these bacteria can be exceedingly dangerous.

Lastly, during a root canal procedure the periodontal ligament is often left in place around the dead tooth, adding further risk for infection and necrosis from this dead tissue lying next to the gums or jaw bone.  Only in the dental industry is a once-living, now-dead tissue and a dead structure (the tooth) allowed to stay in the body; otherwise this tissue would be surgically removed as in the examples of damaged frostbitten fingers, gangrenous toes, severely burned skin, etc!

2.  As spoken by the nurse in my doctor’s office this past week, reddened tissue means inflammation and often indicates the presence of infection.  Pain in the upper left portion of my jaw has lasted over 13 years, increasing lately to the point of requiring periodic Ibuprofen and topical treatments such as (diluted) clove oil.  I now chew food only on the right side of my mouth, avoid hot and cold temperatures, and consume soft/pureed foods so as to minimize the chewing and pressure on my teeth that trigger convulsive episodes.  Geez!

3.  Though considered controversial by traditional dentists, it is easy to find hundreds of mainstream and holistic dentistry sites that have described the dental galvanism (aka “battery effect”) that can occur from the use of dissimilar metals in amalgam fillings, crowns, and dental appliances.  I had my amalgam fillings (generally consisting 50% of mercury) removed many years ago yet there remains a question if there is any remaining underneath one of my crowns.  The bigger issue is that three of the four crowns in my mouth consist of a combination of metals.  To establish if the presence of metals (in the presence of saliva) creates any currents between my teeth, yesterday my husband and I touched the probes of a voltmeter to the surface of the two teeth in question.  The voltage was TWICE that of my skin on my arm!  Steve questioned if this small amount of voltage would be of any clinical significance?  Note that microcurrent (significantly less than the voltage we measured on my teeth) is used in rehabilitation for the treatment of pain.  This means that the body must be affected by tiny currents.  Too bad the current in my teeth is not mitigating pain!    Conversely, I wonder if this battery-effect is over stimulating a part of my brain, triggering the convulsions instead?

Now to flesh out number 3 a little more, I refreshed myself on a little neuroanatomy.  The upper branch of the trigeminal nerve innervates the upper and lower jaw of the mouth.  The trigeminal nerve originates from a part of the brainstem called the “Pons” which sits on top of the spinal cord inside the back of the skull; three branches extend on each side of your head and across the face with the mandibular branch dividing over the top and bottom of the jaw.   During dental procedures, this is the nerve into which a dentist injects a numbing agent such as Novocain.  The motor division of the entire trigeminal nerve derives from the basal plate of the embryonic pons, and the sensory division originates in the cranial neural crest.

Fifth Cranial Nerve Distribution:  Trigeminal Nerve (from Wikipedia 2.27.15)
Fifth Cranial Nerve Distribution: Trigeminal Nerve (from Wikipedia 2.27.15)

To hypothesize what electrical stimulation from 1) this battery-effect flowing 2) BACK TO the brain in the first two of these three areas could mean for a person, I took some liberties and looked up the symptoms of the person who has a stroke affecting these three areas.  (The cranial neural crest has more significance in embryonic development and stem cell research than the discussion here so I left it out.)  My findings are fascinating.  Please note that the exact symptoms will depend on which biological “electrical circuits” and junctions are affected since the structures are so small and interrelated; we cannot know for certain which structures will be affected.  Regardless, I have listed a few symptoms that I do experience from each of these respective areas during my own seizure attack or convulsive episodes.

  • Damage to Basal Plate Symptoms:  Loss of movement, such as stiff, rigid or weak muscles; tremors or body shakes; aphasia (difficulty speaking); changes in eye movements; or changes in motivation or personality.
  • Damage to Embryonic Pons Symptoms:  Weakness of upper and lower extremity (arm and leg on same side as damage); dysregulation from inhalation to exhalation (difficulty breathing); sleep paralysis (inability to move when falling asleep or after waking up and altered dreams); difficulties with balance (ataxia); dizziness due to vertigo; or clumsiness of a hand or arm.  A person with a severe stroke may need help with self-care or feeding as a result.

Wow.  These all have happened in some combination with each “tazoring” as I call it.  Thankfully there are higher parts of my brain in the cerebral cortex that appear unaffected and thankfully the symptoms are not permanent so far!  I would not be able to write this blog if the damage was permanent.  But I know I cannot overthink all of this.  After the onset of acute upper back pain two days ago, I feared what the range of random electrical charges on my weakened frame could do to my heart.  Or was it a heart attack?  Well, no.  I had gone too far.  Pain comes from thrashing around and will be dealt with when I return to physical therapy and chiropractic care sometime after dental surgery.

Wasn’t this interesting?  There is much hope in putting all of this together.  Please join me in praying for the Lord’s will in all of this.  And if it is the Lord’s will, I would love to have these two crazy teeth outta here ASAP!  Time for these little ones to go!  I prefer to be toothless in Indiana with crushed potato chips on my soup of the day instead of this saga continuing.  Even if my hypothesis was wrong, I am grateful for the mental stimulation, the challenge of the hunt.  I trust that the Lord will use all of this for His glory.  Maybe this insight will help someone, somewhere, someday?

And you know and Lord willing, this year I AM GOING TO GET WELL!!!  Yeah baby.  Take care Gentle Readers.  JJ

 

 

And then I got up

It was the most horrific of reactions:  writhing and such.

Even our pup could not make guttural sounds like me in my muck.

Earlier I sensed a reaction soon was a’comin’ . . .

And lo on the way home the tics started showin.’

So we showered once home, throwing our clothes in the wash

In case you think romance followed I’ll tell ya that was ‘nash —

Not the way it came down I say as I leaped into bed

Barely dried off and with a wet towel flung from my head.

An hour many would not survive followed me in there

I marveled as my lungs, heart, and mind would again persevere.

My beloved raised me in his arms to feed me some water

Then with more wimpers and smaller jolts he sensed the cause of the matter:

An older building, became soiled with everything one could imagine

‘Twas cosmetically upgraded with bright lights and smiles on everyone.

It was hard to tell during a visit as important as this

That there would be hell to pay later for pursuing a visit.

But that’s the way it goes when your brother finally gets the care he needs

In a 4-star nursing home upgraded from one he survived where they could subtract at least 3.

We chatted, we laughed and the pupster Elle provided all the charm

The rekindling of family love, fulfilled with treats from my oven still warm.

Then came the gift from my bro when Mike let me play O.T.

And minister to his contracted frame, providing hope to both him and me.

My skills were still there and his muscle memory someday could return

Lord willing we shall see His purpose and be grateful for this wild ‘journ.

So how can I complain that some new treatment of my own did not hold

When I just started 2 days ago then walked into a fiery test a bit too bold.

‘Cause long after the last jolt, the last choreathetoid seize

I was able to get up and make myself something to eat.

Now sitting here listening to my slumbering beloved who works in the ‘morn

I am grateful for so much although tonight so much is yet unknown.

“When will this crap end?” I ask myself and the darkened night air

“In just a little while,” responds the Lover of my soul Who holds my life in His care.

So even in this I will trust in the God Who has promised

That all things will be good.  Get back to bed.  Good golly it’s almost (morning)!

JJ

Mike and Julie at Medilodge in Michigan
Mike and Julie at Medilodge in Michigan