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

 

Torture, water-boarding, and more: Part 1

balance-testing

These 3-part posts are not for the faint of heart.

I wish that I was not writing them.

This was my reality just 24 hours ago and it bears recording for future reference.

A true miracle usually starts with a hell-of-a-story.  So here it is, Part 1:

Many of you gracious, Gentle Readers know that I have been battling a serious illness for just over 4 years.  What began as an acute, viral hepatitis became the introduction of an ongoing drama that has now included (alleged) Chronic Lyme disease, mercury toxicity, poisoning from root-canaled teeth, Stage 2 Candida infection and Chronic Inflammatory Response Syndrome (CIRS) including a biotoxin illness.  The most wretched of the myriad of symptoms continues to be daily convulsive episodes.  And for the last 2 1/2 of these 4 years those episodes range from 2 to 10 hours per day rendering me useless for a bigger chunk of daily living.  (See this video for a sample.)  Currently there is no end in sight.

My toe clips failed and I fell off my bike on August 23rd of this past year causing a Closed Head Injury with Concussion.  While my baseline functioning was only mildly affected, the orthopedic and neurologic impacts were measurable.  I hit my left shoulder, elbow, wrist, knee and side of my head on the pavement.  Within the next few weeks I received chiropractic and physical therapies then was referred to “The Balance Center” to assess ongoing dizziness, lightheadedness, ringing in my ears, etc.  I pleaded with my Doctor to delay the 3 1/2 hour test procedures due to the severity of the convulsive episodes and the fact that the acute symptoms had already diminished.  He agreed and we delayed it one month to allow some additional time to heal.

The Balance Center had to get special permission to schedule the appointment after I mentioned “seizures,” for fear that I would not be able to tolerate the test procedures.  Wise concerns.  My Doctor approved their request to proceed!  When the day got nearer I intervened and delayed it another month to October.  My Doctor understood my reasoning back then and pressed for me to complete the assessment as scheduled this past week.  He stated that there still could be some vestibular issues contributing to the convulsive episodes and lingering symptoms noted above although the latter had improved.

I knew I was doomed.  Having worked in occupational therapy for over 3 decades until disabled by this wretched illness, I knew about vestibular testing and rehabilitation.  I had attended a weekend training for it many years ago and referred my home health patients to this very clinic!  Now it was my turn.  I also knew that test devices with moving parts that cause you to lose your balance, spin you around, prompt you to move your eyes rapidly and the like would be hell for me.  I did not think I would be able to complete most of it.  That is exactly what happened:  the first appointment in October had ended after the audiology test portion: a simple hearing test in a quiet, sound-proof booth!  When the audiologist entered the room to review the results after I had just stopped seizing, her perfume sent me into more violent episodes.  It took a long time to recover from everything as I sat in a cold chair in a long hallway, staff and patients busily walking by . . .

They did the best they could with my atypical “case” perhaps.  However, the room with the sound-proof booth was already booked for the next patient and the schedule, the schedule, THE SCHEDULE must go on don’t you know?  Such is life in modern medicine these days.  It was a very desolate feeling to sit there with my unsupported head banging around with no where to lie down to minimize injury.  Gratefully the technician was very nice as she escorted me to my “recovery chair,” and later offered to reschedule me.  Reluctantly we settled upon the last day of the year:  that was yesterday.

See Part 2 for the rest of the story . . .

 

 

A different kind of Christmas

Perhaps it is a sentiment of many Dayspring and Hallmark greeting cards to define Christmas as “the most wonderful day of the year.”  For a believer in Jesus Christ, the day is one of the most meaningful:  celebrating the birth of our Lord and Savior.  But perhaps the most significant holiday is actually celebrated on Easter Sunday as we recall the sacrifice that Christ made in dying on a cross for our sins such that we may have everlasting life.  No sentiments are implied or required:  the truth is that He came to save, the truth is that He is Lord of all!

Isaiah 9:6-7New King James Version (NKJV)

For unto us a Child is born,
Unto us a Son is given;
And the government will be upon His shoulder.
And His name will be called
Wonderful, Counselor, Mighty God,
Everlasting Father, Prince of Peace.
Of the increase of His government and peace
There will be no end,
Upon the throne of David and over His kingdom,
To order it and establish it with judgment and justice
From that time forward, even forever.
The zeal of the Lord of hosts will perform this.

I can almost hear the victorious singing of Handel’s Messiah in the background as I read these words.  Such is the confidence that we have, the joy we know as believers in Jesus Christ!

Many days when my life is a “nothing burger,” these words are just about all that I have for comfort.  My Christmas and Easter in 2015 were not filled with either the people or activities of a typical Christian holiday.  There were no church services dressed in better finery, homemade treats enjoyed in the basement afterwards with the dearest of friends, or family dinners filled with laughter and much feasting.  The décor around here was the same as it is every day.  I could go on with all that was cut due to the ravages of severe illness but I won’t.  Perhaps you get the idea Gentle Reader?

I spent each of these holidays staring into nothingness for much of it yet also with nothing to distract me from seeking the face of my Lord.  My prayerful meditation was uninterrupted and peaceful.  Warm, loving glances came from my beloved Steve whose presence is one of the greatest gifts I could ever ask for in my life.  Even our furry friend Elle is always a special delight with the gentlest of brown eyes, the softest of fur coats.  I did get somewhat of a break during the middle of the day on Christmas in which we connected with family via Skype and the phone, MacGyvered a tasty meal of sorts, and opened some sweet gifts for our eighth Christmas together as husband-and-wife.  Yeah God for special moments like these!

In two days we will continue and conclude as many of these traditions as we can in a gathering with my husbands adult children and their spouses.  They graciously will attend to the mold/fragrance-avoidance practices needed for me to host them in our home.  Since it may be my only time to see them when they are in town from their respective States and countries, I do pray that I may be able to participate in every moment available.  They are wonderful young adults and I do love them so!  I have simplified our menu and Steve has begun the preparations.  We have spent extra time finding special gifts that would be meaningful; one of them may even serve temporarily as a different kind of “Christmas tree!”  We’ll see.  I still have to pull that one together!  Eeeek!

So if you too have changed things up a bit for this Christmas season, know that you are not alone.  I understand completely.  It’s o.k.!  This holiday along with Easter in the Spring have nothing to do with Santa and the white bunny carrying chocolate eggs.  These special days have everything to do with a decision we each make in our hearts about Who we will serve as Lord over our lives.  Where have you placed your trust dear friends?  With a personal relationship with Jesus Christ, we will have a celebration that will never be limited to a date on the calendar.

Charlie Brown Christmas
Nothing beats a Charlie Brown Christmas message:

And with that decision made to follow Christ, every day will be a different kind of adventure that transcends the moment into all of eternity.  Yeah, I’m on board for that one.  Will you be along too?  JJ

The view from here

Strangely dim or so it seems at times with

My cries, my prayers, the scripture that rolls off my tongue to no where

All serving as a cathartic drug I suppose I suppose.

My mind is stunned in an electric shock of sorts:

Body thrashing, limbs violently shaking, breathing withheld for a very long time

Until the darkness that seizes me lifts its grip on my life with the deepest sigh.

Living in hell will bring weeping and gnashing of teeth it is written

Surely worse than mine yet I still don’t like the taste that visits me,

Not knowing from whence it comes, from whence it goes rendering me useless for hours on end.

The next big thing keeps me chasing that miraculous dream inside:

To find a cure, the right Doc, the right stuff to end it all already

Should it exist this side of heaven we both ponder my sweet friend.

“What will be the villain’s name?” I wonder then do not care

The left side of my brain is tired and just wants to go home, to settle here in my heated bed

To sleep perchance to dream, aye, there is the rub as Hamlet said.

Not much has changed:  the beaten-down headache remains the same;

The husband lacks sleep and cries softly as his love tears our heart strings painfully once more.

What will his own lean on the Lord reveal from the Divine gift of a brilliant  mind?

We ponder a move.  We ponder a Mayo run.  We try variations on old remedies.  We pray for fumes to carry on —

As day falls into night and our intimate distance is lengthened over and over again.

Psalm 41.3

Yes, this is hard, Gentle Reader, and not a path for you I would ever choose.

It came this way anyways ordained by my Lord exactly for now as you have faithfully watched it unfold . . .

The nightmare is not over yet:  the final scene unwritten with the cast still shy of their curtain call.

So we will hang tough for the fourth year, the fourth act, that melts into a joyous season as they say

Of Christmastime when all we should do is look up anyways from our worries, from our homested.

It’s all about that Baby right (the One in the manger with stench all around His head)?

Yes:  He has come to save me, to save you, to make right that which hangs low on a starry night, for those who believe dontcha know?

My Jesus Who saved me with perfect grace once and for all

Will bring me to a better place with a view I cannot see from here:  one that faith beautifies beyond hope, beyond dreams, beyond the best love that has carried me thus far.

And when that moment comes when heaven is the only expanse of scenery from here

Twill be no matter the bumps, the downhill runs, the heights with hind’s feet lighting on high.

I pray that I will get to see you there Gentle Reader:  it is with you I want to celebrate it all!

For someday our cares, our view will be transformed and it will be as beautiful as promised.

But just assure me this:  will you be there in my view?

With love, Just Julie

 

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://jesusisforthewounded.com/wp-content/uploads/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