More arrows pointing at a target

Seems like there are more arrows pointing at the same target this time, but will the archer get it right? You know, the one in the white coat with the big degrees, fancy knowledge, and ticking watch?

doctor, stethoscope, diagnosis, pancreatic cyst, EUS, endoscopy ultrasound, insulinoma

Too bad that it was me and not one of them that pointed out that the pancreatic cyst mentioned on the CT report still needed some kind of follow-up! But maybe it’s alright that things happened in the order in which they did? At least my 32 year relationship with thyroid medication has ended and removed one more factor in an equally puzzling dance with hypoglycemia.

Peripheral neuropathy, heart disease, hypoglycemia, insulin resistance, pain, nausea, and a pancreatic cyst were all written down but no one put them together in the same story until I brought the report to my Doctor on September 11th. Let’s add daily seizure attacks for 7 1/2 years shall we? You know, the ones that we recently discovered can go away sometimes with a blast of sugar? The glucose monitor doesn’t scream answers yet as to why this occurs and how to manage it, try as I do, but some other labs are finally leaving clues.

An MRI and MRCP are behind me and an endoscopy ultrasound (EUS) shall commence but not a 72-hour fasting blood test (used to diagnose a particular type of pancreatic mass associated with hypoglycemia). Oh well. We opted for the local specialist to evaluate me but he only does the former test not the latter. I just hope it wasn’t a mistake NOT to return to the Mayo Clinic and the Pancreatic Clinic this past week. Travelling there is a big deal and trying to get home after procedures is a bear dontcha know.

I’ll try not to ruminate about the potential for pancreatic cancer and hope that this miraculous little finding is ordained by God for a time such as this, to point the new “archer” to a cure for my worst symptom. Who knew that these days when you have hypoglycemia they look for a cause? Decades ago the medical folks just had me eat small meals of particular food combinations; “it may or may not turn into diabetes someday” they said. Similarly I have seen just this year how medical treatment protocols change! Yes, thyroid nodules have not been treated with medication since the protocol changed in 1986! The researcher of that study turned out to be my endocrinologist at Mayo Clinic in March, starting me out on a plan of action that ultimately calmed my fried nerves, weakening bones!

Keep your eye on the ball I keep telling myself. One step at a time: live around the nausea, pain, and increasingly unpredictable convulsive episodes. Figure out what to eat. Cancel plans with your husband and stay home where it’s safe. Yuck! Venture out when you can regardless of how you feel. Keep up with the IV fluids every 2 weeks and take 2 cherries before bed in case the sugar spike prevents the episodes that meet you there every night. Then try to sleep knowing that the tempest beast who has ravaged your neck and back and head thousands of times before is lurking before you fitfully pass out by morning . . .

This hell. The joy is gone. And yet as I have stated to myself before in the words of Moody Church pastor Erwin Luitzer, “when going through hell, don’t stop.” Count your blessings including some new ones here at home; embrace your beloved hubby dear who loves you so. Dwell in the presence of your Savior. Reach out to friends in Christ. Talk to Jesus . . . He is here right now, back there, and out there too.

Twelve more days will have passed and chemically-induced rest for the EUS will be here soon enough. You got this! JJ

In the thick of things

Just before the dawn breaks open the darkness

The night seems the blackest, the air the coolest.

But really what difference did it make to the day?

It was already breaking forth before anyone could see it.

Stumbling over rocks and brush and twisted debris

I would not think there was a way out of those woods . . .

Only the squirrels knew where the last canopy reached:

It was already marking the clearing before I could see it.

The shiny reflection on the pavement up ahead

When travelling along the road at high speeds

Suggests water on the horizon but alas, it is not to be

It was already stretching out forming a new illusion to see.

Things just aren’t what they seem along the darkest trails of our lives

Yet we pretend we know what is to come from the markings underfoot

Better to trust in the love of the One who sets us free to explore these

He is already there with adventures in-hand if we but open our hearts, widen our gaze, and keep walking ever nearer to Thee.

For He will never leave us, forsake us, forget us, deny us you see

Jesus loves us, precious in His sight and placed perfectly in the Father’s timely gifts

And the places He wants us to go will yield more good than that we ever could foresee

Oh how it will simply make more sense in the clearing someday under the sunshine beyond . . .

For now I am just going to keep walking.  Gentle Reader:  care to join me?  JJ

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Torture, water-boarding and more: Part 3

[Eight hours have passed since I wrote Part 2 that chronicled the second phase of my recent hearing and vestibular testing at our local Balance Center.  Four hours of the eight were lost to persistent deep-brain convulsive episodes then passing out in exhaustion and tears for about 2 hours.  These episodes are different from those usually associated with epilepsy; I do not have epilepsy as I am awake, aware of my surroundings, sometimes able to communicate, and can often pinpoint the trigger of the living hell that follows.  (See this link for more information.)  The assessment was completed 1 1/2 days ago but its negative impact has lingered.  Here is my conclusion to this story with hopes of a little cathartic experience to follow as I use blogging to let go of the trauma that went before me.]

In Part 1 of this series I gave a brief history of the four years of illness that has precipitated the referral for testing at The Balance Center.  In Part 2, I shared the severe struggle I encountered with the first two parts of the second phase of test procedures rendering me useless on a treatment table with my own carbon mask covering my face, wretchedly seizing without end.  Eventually and by the grace of God the episodes finally stopped.  I learned that the 3rd phase of the testing would conclude in this third treatment room where I was lying and would normally take about 30 minutes to complete.  Alright, so again I rallied, sat up, got some new goggles calibrated, and got ready for battle.

The technician, “M,” had me lie back down on the treatment table for what appeared to be a simple process of keeping my eyes open in the darkened mask while she would be squirting some warm water into my ears, one at a time.  She said that the water would only be a couple of degrees warmer than my own body temperature but might feel much hotter than that.  She wrapped the left side of my head in A LOT of paper towels.  Then suddenly without any additional warning a massive blast of really hot water banged against my tender ear drum!  WTF?  (Seriously, I generally don’t swear so imagine something nasty like moldy f-ruitcake at this juncture!)  Then within seconds and before I could catch my breath CAME A SECOND BLAST of equally hot water!  Within 10 seconds I was massively dizzy, yes, the highest number on her 4-point scale, thank you very much!  How is this even possible?  What the heck could they possibly be testing through such a tortuous, water-boarding procedure?  I winced in more head and neck pain as the convulsive episodes immediately returned with a vengeance.  “Why Lord!?  Why all this suffering?” my heart cried.

I struggled as she kept telling me to keep my eyes open for two full minutes or we would have to repeat the sequence.  Oh dear not that!  All I wanted to do was close my eyes to retreat into the smallest cocoon in my mind and die.  (Someone please kill me now.)  Keeping my eyes open in a darkened room and blackened mask under these circumstances was more difficult that I can describe to you.  I was wearing my carbon mask PLUS the large black mask pictured in Part 2, much like Darth Vader in The Force Awakens!  Of course in the thick of the now-violent head banging it would be my only solace to close my eyes and hang on for a ride worse than a Mexican taxi driver racing along a dirt goat path along the side of a cliff.  (I know.  I have endured that too.)  I am not sure that I even breathed a peep for the remaining seconds.  “Please Lord.  Make it stop!” I pleaded in earnest.

“M” graciously gave me all the time that I needed to start to calm down enough to try again.  Perhaps, she said, she could allow me to skip the cold water-boarding torture test if I could only repeat everything on the right side too?  Well that almost seemed like some good news at last!  And there would only be one more test after this one.  “One more?  O.k.,” I thought to myself.  “I am not coming back to this holocaust-for-a-day ever again so I had better decide right now how much of this I can really take.”  And in the life of a believer in Jesus Christ the answer is faithfully:  all of it.  “Somehow, my Lord has seen me through so much hell in my life already,” I reasoned.  “Please Lord, help me finish so I can go home.”

The last 2 blasts of hot water were slightly less traumatic in my right ear since I now knew what to expect.  (Imagine that:  you are about to get burned in one of your most sensitive parts knowing that it will spike dizziness worse than any world-famous roller coaster ride.  You know that it is coming as the train click, click, clicks up the steep hill of the Gatekeeper at Cedar Point or some such nonsense.  Good times indeed.)  In that back room of The Balance Center I braced for impact.  Smash!  When the two minutes thereafter were done I wept from deep within my soul once again.  There no longer was anywhere safe for me, without sickness or pain, anywhere on the earth.  I am not being mellow dramatic.  I was a machetied puppy in my spirit and broken in my weary frame.  Everything hurt grievously.

In due time I was able to sit up, transfer to a chair, and finish the final light bar test.  I have no idea how I did this.  Suddenly the technician’s tempo increased and she revealed that she wanted to take me to the lobby so that she could clean the room!  I knew that I had taken longer than most patients in completing the battery of tests.  And that’s when her sweetness kind of stopped.  She re-appeared with a wheelchair as I was still deciding if I was alive or dead?  Could I move my limbs to get up or had I digressed into the neurological collapse that often follows severe convulsive episodes?  More shaking, more head-banging followed this time sitting up and it had not stopped yet when “M” returned.  (Those attacks are the worst kind, by the way.  No protection for my neck when flailing up in space.)  If my central nervous system was in collapse-mode then I would require maximum assistance to move.  Moments passed.  I breathed as best as I could.  I really needed to walk out of there under my own power . . .

And so I did.  I sat in the lobby for at least 30 minutes then another 20 minutes in my truck before even thinking about driving home.  I could barely eat a few bites of the makeshift lunch I had brought with me.  The words “shell-shocked” apply here.  By the grace of God I rallied again and was able to drive home.  Within a few minutes of arriving safely I came unglued, raced to our bedroom screaming and crying, overcome with grief, unable to speak to my beloved husband in complete sentences about all that I had endured that day.  My mind unraveled.  Somehow I completed the mold-avoidance procedures we follow when returning from any public place.  Hot tears streamed down my face, mixed with the cleansing water from the shower head washing away the horror, revealing the sinus and neck headaches, unmasking the fact that no where in my body was free of pain.  The bed received me at once with more thrashing/hell that was required to unwind all the damage that had been done.  Eventually I passed out for about four hours . . .

********************

Somewhere in this journey that the Lord has ordained for my life will be a glorious story of redemptive grace.  A miracle perhaps.  Healing?  Wisdom gleaned from the years the locusts have eaten, so to speak.  Blessings?  Those are promises that we all can count on when we walk with the Lord our God through His Son, Jesus Christ (Romans 8:28).  We will know that our trials will not be wasted.  Something good will come from them whether in this life or the next.  When I am more recovered from The Balance Center ordeal I will speak about this with more confidence that I can today.  What I want you to know is that I am not giving up.  My heart raced and I was unable to breathe during one of the most violent episodes that transpired during the test procedures but I did not die.  That being said, it is again crystal clear there must be more for me in the future.  I am still here so why not get ready to really live instead?  I can deal with that one for sure.

And so can you, Gentle Reader.  But if you are “dead” in your sins then that is a different matter.  Why not choose life in a personal relationship with Jesus Christ who will one day replace all of this suffering with fulfillment of His promises?  Please contact me if you want to discuss this further.  Please allow my suffering to bring you renewal, bring you cleansing once and for all.  We simply do not have any more time to waste!

Godspeed.  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

 

Let the numbers tell this story

While the numbers in my college statistics courses were fascinating and I applied them well in my Master’s thesis, I must admit that math was never really my forte.  I’ll blame it on Mr. Courtright!  Our Algebra II/Trigonometry course in high school was a constant source of frustration!  John and a couple of the other male students would pour over the text book with him at the front of the room trying to understand the lessons he was supposed to be teaching that day.  Yeah, you got that right:  high school seniors trying to figure out advanced mathematics on the fly!  I am so very glad that I never again had to sit through a traditional math class after that one!

Statistics are a different genre though.  Statistics often tell a story that we can use to make sense out of the stuff of life.  For example, landing one standard deviation from the mean (the average) in a bell-shaped curve can help us feel like things are going to be o.k. most of the time, in the right scenario of course!  Enter here special numerals applied to my recent trip with Steve to Georgia and South Carolina that will tell this story better than I can even without a calculator!  Oh how I wish some of these were more comforting than the majority of them though . . .

Over 7 days of camping in 2 locations, I was unable to leave the travel trailer 3 of the days due to illness.

My beloved Steve attended 2 of the 3 family wedding-related activities in Georgia and I attended zero.

We travelled over 2,000 miles in my truck with our 67-pound German shepherd, Elle, settled sweetly behind the jump seat of the King Cab.  Such a great traveler she has become!

I prepared about 96% of all of my own meals making this trip more of a “business as usual” affair than vacation in the realm of food.

One hour of the five that I spent in our friends’ home on Monday was spent in continuous convulsive episodes on their couch.  Thankfully the two young children had already gone off to bed when I crashed; graciously the three adults prayed over me for the Lord’s tender care as we all go forward from the significant stressors in our lives.

The kids and I planted 32 daffodil bulbs the morning we left South Carolina, overplanted with dozens of anise hyssop seeds.  Hooray!  By Springtime the view from the kitchen window of their log cabin will be alive with flowers interspersed amongst the numerous towering pines.

daffodils, mini daffodils, buttercup flowers, Spring flowers

A threatening wind storm with gusts up to 40 MPH forced us to leave a day early for safety towing our Camplite on the highways to get back home.  Just a few minutes after we arrived home at 4:00 a.m., the winds increased again closer to the estimate of 50 MPH by morning.  We had blown in just in time, praise the Lord!

Nearly 4 days have passed since we got home and I have yet to clear out, clean out the rest of the trailer as needed after a week of travel.  Steve completed the first 5 loads of laundry and about 3 more are left to go.  I have been sick in bed for most of the past 3 days, sleeping in late to recover from the nasties which characterize this wretched illness.

Over a dozen doses of a new anti-microbial treatment (Biocidin LSF) have brought both relief and a flare up of symptoms at times:  begun when travelling and continued back home when seeking a new direction, new relief, new hope for a future without illness.  Two violent convulsive episodes followed on Friday after an appointment with a new specialist and a new lab test, respectively.  Many more filled the 2 days that followed.  Perhaps this week (and 2 weeks shy of the 4-year anniversary of the first waking seizure attack) there will be an answer to end this suffering?  The odds are wearing thin lately for sure.

Yet through it all, I am reminded of the 3 days that my Lord and Savior, Jesus Christ died and paid the price for all the negative numbers, the heartaches from what is not right in our world.  He knows the mathematics of it all greater than I can ever imagine and holds it all tenderly in the palms of His hands, ready to redeem it for good when He comes again in glory.  I choose to believe the promise that His precious thoughts towards me and you too, Gentle Reader, outnumber the grains of sand on the earth (Psalm139), giving us hope for a better tomorrow.  For as He thinks fondly of the ones He loves, He also promises to wipe away our every tear someday (Rev 21:4) when the time is right:  when time is no longer numbered in eternity with our Heavenly Father, God.

And that my friend is a story worth writing about.  A world without limits.  A love beyond measure.  I just hope that when all is said and done, when it is time for rejoicing in the heavenly realms, that you will be there with me there too?  Let not these numbers be wasted!  Won’t you accept the love of Christ into your heart this day, this night too?  Oh how I hope so dear one.

With love, JJ