Where to go from here?

More testing, more phone calls

Why did I ask for preliminary results?

Wouldn’t you knowing my next appointment was so far away?

Two hours of seizing.  Every day now.  Of course I asked!

Sigh.

Full report due next week.

The findings of acute toxoplasmosis will be clarified.

Will PCR or the summary mean more antibiotics

To challenge my innards, still reeling from IVs last year?

I cried when I should have been glad

To know there was something there after all —

The test will cost over a grand

And we have no idea what insurance will do.

So for now I wait.

The specialty lab is delivering on time

Hoping the Lab Director talks to my Doc

And none too soon . . .

Hold me Jesus.

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

 

My Prayer Today

The rascally rabbit won and I lost.  Big time.  Two days have gone by and I’m just starting to move about the house.  Guess rabbit is not good for my nerves or anything else.  The weird diet needs to be adjusted!  At least the dog likes it!  Dogs can eat anything ya know . . .

My prayer today is for this nightmare to end.  I asked my hubby Steve if he thought there was something I was to learn from this illness that I wasn’t getting?  He said that maybe it’s like Job (of the Old Testament).   Job lost everything except His wife and a few skeptical friends when the Lord allowed Him to be tested.  God wanted to show Job’s faith to a conniving Satan and gave Satan free reign to destroy Job, but not kill him.  Job endured:  he did question God at one point then quickly humbled himself before God Almighty when God spoke to him.

Job had it much worse than I could ever imagine.  Covered in boils, heartbroken from the loss of all of his children and possessions, and all at a time when he had been living a God-honoring life.  My year-long illness, loss of my parents and brother, abusive childhood, heartache when my former spouse took so much, condo fire, and throwing up 12 times Tuesday night still did not compare to Job’s losses.  And I doubt my faithfulness compares either.  I am too quick to complain.  I am too quick to want more.  I am too impatient at times.  And I just ain’t grateful enough.

The Lord has grown my faith, softened my heart over the years.  He has blessed me, restored me beyond measure.  I have so much for which to be thankful.  So why do I want more? Why do I want it all and right now?  I believe it’s because we are all hard-wired to want something that we cannot have in this life.  We are created to seek that which can only be satisfied in the person of Jesus Christ, in loving Him and letting Him fill our thoughts and times of longing.  While I do seek Him continuously, I must let more go at the foot of His cross AND LEAVE IT THERE!  He is worthy of my praise.  He is honored when I go to Him with my hurts and needs.  He loves me and knows my heart, I know.  I must trust Him even when I cannot see Him clearly.  My faith must grow even more.

Writer Sarah Young understands this process well in her book, Jesus Calling.

Because the world is in an abnormal, fallen condition, people tend to think that chance governs the universe.  Events may seem to occur randomly, with little or no meaning.  People who view the world this way have overlooked one basic fact:  the limitations of human understanding.  What you know of the world you inhabit is only the tip of the iceberg.  Submerged beneath the surface of the visible world are mysteries too vast for you to comprehend.  If you could only see how close I am to you and how constantly I work on your behalf, you would never again doubt that I am wonderfully caring for you.  This is why you must live by faith, not by sight; trusting in my mysterious, majestic Presence.

So I am in the middle of a Great Mystery, written by my Father and King.  My prayer today will now change to learn to rest in His care until His truth, purposes, and blessings are revealed.  Like an adventure of sorts.  I wouldn’t stop reading a great book of fiction in the middle chapters when the antagonist is winning and the protagonist is lying shredded on the ground.

Yeah, it’s not that bad.  Time to take a shower now.