Just sitting at the table

 

My beloved opened the door

And my evening suddenly brightened,

Knowing he would be close with a listening ear

Makes handling the “nasty” less bad and more good afterwards.

I just don’t get used to

The evening ritual of torment

When my world goes dim from sickness

No matter the resting gone before, the mini successes (or so I thought?).

sitting, chair, upset, anguish, grieving, prison, torment, grief, hurt, person, woman, man

I was just sitting at the table

When my eyes pulled closed and shook

My head and neck followed next then I knew

There were just seconds to get lying down before all hell broke loose.

So I did run to the bedroom

Head turned to soften impact bedside

Eventually pulling the comforter over my broken frame

As the sputtering gave way to shouts of terror, gasping for air, legs drawn up too.

In waves the torment continued

Just when I thought I might cry for help

No words came when Steve came to my rescue

Trying to figure out how to get a remedy inside me as I twisted before his eyes.

Tis trauma for us both

When a Monday night isn’t anyway alright

For I will never accept that fifteen hundred of these nights

Are the way it should be forever, oh Lord deliver me please!

Try again the new this or that

Until we or the Docs get it right or even better

Til that night we will sit talking about our day eye to eye

Then ready ourselves for bed with a tender embrace as it should be.

Oh I know others have their trials

And I grieve for theirs with ours in there too

Let me know your need for prayers, Gentle Reader

Allow me to make good use of this time before the altar:  His throne of grace.

My Jesus cares for me, for you

He loves us and lives for our coming to Him

No matter the reason TRUST:  all will be new one day

Until then pray for me too, k?  I am tired from this ungentle cross at my tableside.

JJ

 

The Struggle is Real

Wake up and wait for the tempest beast to roar

Through my head, my tender frame — ah the pain:

Will I be able to hold back the waterfall in my loins

Will my body rage with tazoring if I try to rise to soon?

Welcome to my world, my day, my nightmare as Cooper said

Alice had black eye make-up unlike the darkness behind my lids

Held so tight, squeezed closed by puppet-like strings of wrath

Taunting my resolve leaving me nowhere to turn but to His Face.

My Jesus knows torture far worse and soon we will celebrate

How He came to save us from our hell by His bodily sacrifice

His ministry when hated, limited only by the perishing of His frame

Such a witness for me, for all to keep moving forward always.

No trial shall thwart the plans made for us in the womb

When our Lord crafted our days, the ups and the deep downs too —

He grieved yet promised to walk with us and deliver us one day

So we could have hope and a reason to reach for His gift above all.

So that is where I will turn:  the Cross of my Redeemer that lives

That delivers me from the angst of life without hope for alas it does:

One day this suffering will be gone and my story will be my cross

May it bring glory to the One who opens my eyes on my bed of becoming . . .

 

. . . for my just reward, for His purposes, for trusting when the struggle is real.

JJ

cross of jesus

A Tender Place

Hellebores, hybrid, tender, lenten rose, blog, poetry, prose, Winter, early Spring

So if the Lenten rose can bloom amidst the snow

Yet if I not carry forth my joy past the continuing rain

Does that make me a bad person, my beloved, my dear?

He told his tale with passion once and again and again

Yet I have not seen the same victory these many years

Does that make me ungrateful before my Savior, my King?

To celebrate this one’s renewed life, ’twas hard-won indeed

Doth makes me part of this man’s humanity in Christ

Yes, takes little, no none from my own pool of goodness . . .

And yet I cried and pushed myself away, away for a time

Lest my tears steal more than the punch line to come,

Dost my ingrace keep me from moving forward one day?

Aye this is a tender place whereat I have landed

Not bad, non-indifferent, full of meaning that I like

Where life meets the road upon which it travels and perceives.

My Lord knows this woe:  He cried for the sorrows we do endure

Then gave the breath from His very lips so that we may live,

Be free of it all at last, the strife, every bit, you and I both.

For we two understand what it means to face death

To fear the life places that would ignite some others to thrive

But it took a tragedy beyond belief to get us moving right.

We may have wrestled then let go as our Redeemer carried us along

Finding one day that peace hath returned:  covering the tenderness

Becoming the places that defined us whilst ending the story done well.

[My hope is that I am in one of them right now, Gentle Reader.]  JJ

Do No Harm They Say

25 I know that my redeemer lives,
    and that in the end he will stand on the earth.
26 And after my skin has been destroyed,
    yet in my flesh I will see God;
27 I myself will see him
    with my own eyes—I, and not another.
    How my heart yearns within me! (Job 19)

I was transported from my home via ambulance to the emergency room in the closest hospital on the evening of Tuesday, January 3rd.  My husband, Steven Horney, had called 911 when frightful and unusual writhing movements would not stop.  The emergency personnel lifted me off the floor where I had been in distress for about 30 minutes:  straining to breathe with my body twisting and contorting in positions of postural extension (choreathetoid-like movements that look like a child disabled with severe cerebral palsy), struggling to communicate, unable to keep my eyes open, bumping into kitchen cabinets and floor, pained by the overhead lights and banter of the personnel, and chilled to the bone.  They rolled me out into the wintry air without a coat, shoes, or blanket and with the rain sprinkling down on my exposed skin.  “We will turn the heat on once we get into the ambulance,” the man said.  I hung on for the ride not knowing what lain ahead of me.

I tried to communicate to the paramedics in broken phrases that the episode that they were witnessing began hours earlier after a scheduled dose of Gabapentin (Neurontin). That drug was prescribed for me September 18th at the main hospital when I was admitted for management of the complications of shingles.  Gabapentin was helping reduce the searing nerve pain in my face.   But for some reason starting on Monday, I started to have little tic-like shaking episodes within an hour of taking it.  And for some reason on Tuesday, within 2 hours of taking it, things escalated out of control from episodic tic attacks to non-stop writhing on the floor of our home. I had never had symptoms before like what was happening on that Tuesday evening.  Having an extensive medical education myself, I suspected an adverse reaction to Gabapentin.  Regardless, I was terrified.

This wasn’t my first trip to the Emergency Room in recent years. Another type of shaking episode [diagnosed by Lyme Literate Medical Doctor (LLMD) as symptom of chronic Lyme disease] has required treatment on an urgent basis with intravenous fluids.  Other medications were sometimes administered in the ER for pain or symptomatic relief only to exacerbate the shaking episodes.  In all of these situations, nothing has helped as much as a minimum of 1,000 ml or more of fluids.  So I was pleased when Dr. P evaluated me in the ER at the local hospital on the night of January 3rd and ordered 2,000 ml of IV fluids.  No labs were drawn. I was not pleased with how he or his staff treated me, however.

How can I possibly describe to you how terrifying it feels to be coherent and aware of one’s surroundings yet unable to communicate fluently or control one’s bodily functions above bowel and bladder? You fear you will stop breathing, have a heart attack, not survive.  Then again for me, I knew that I had survived severe episodes of frightful symptoms in the past and feebly hoped my body could take yet one more massive assault to my weakened frame.  However, when pressured to answer questions over and over again by (condescending) medical personnel doing their periodic “evaluations,” all of this did not come out of me with pretty language.  I am sorry for my swearing and inability to communicate clearly.

Perhaps my clinical presentation didn’t make sense compared to say a classic case of epilepsy or maybe the disorientation that goes with a textbook definition of dehydration? I wonder what things looked like to the emergency personnel who came to our home?  Or the emergency room staff?  The long list of medications, allergies, and diagnoses in my medical records surely confounded things a bit for the Doctor.  At least one of the nurses present that night had seen me in that ER before.  Would he be able to separate out the prior visits with this one?  After all, Gabapentin is used to treat both shingles and seizures, isn’t it?  What if this indeed was an adverse drug reaction to Gabapentin? Were procedures followed to rule out an adverse drug reaction?

All I know is that I was horrified and further frustrated by the scornful treatment of Dr. P and the nursing staff in the Emergency Room of our local hospital on the night of January 3, 2017. Dr. P claimed that I should be able to stop the involuntary movements because I had been able to speak at all.  He claimed that the involuntary movements had stopped when I was able to push out a response to his question albeit with pressured speech.  That simply was not true.  (The involuntary movements never stopped until much later.)  Dr. P argued this point and others with me!  My distress increased.  He finally left the room only to return to pressure me some more.  Eventually the treatment was administered and completed.  Eventually he left the room and did not return.

The involuntary writhing movements did not slow down until nearly ¾ the way through receipt of 1 liter of normal saline via IV. The acute contortions slowed first and were followed by tic attacks:  the various involuntary movements became intermittent, flared again, repeated this pattern a few times then finally stopped for a while.  I finally was able to lie on the gurney motionless.  My dear husband Steve sat nearby.  I was exhausted and I think he was too.  I felt dejected by the staff.  I was afraid to move for fear of retriggering some kind of return of symptoms as this had happened in the past after a neurological event if I tried to move or speak or if the treatment ended too soon.  At some point a nurse started a second liter of fluids.  I nodded and might have muttered a few words.  I needed to use the bathroom and was assisted in the use of a bedside commode.

At this point I was weak but beginning to feel some hope. Sometimes voiding helps these kinds of symptoms.  I returned to the gurney.  To my surprise, the primary nurse then notified me that the fluids would stop and I would be discharged.  Approximately 1,500 ml (of the 2,000 ordered) had been infused and they said that 1) since the shaking had stopped and 2) I had voided a large amount, 3) that constituted proof that I was rehydrated.  I still could not speak but may have nodded again.  What became clear to me a day later was that the hydration ended WAY TOO SOON. I still could not function when the fluids were stopped.  And further, I definitely was not yet stable enough to tolerate what followed next.

Several members of the nursing staff came into the room and tried to help me get dressed while the IV was still connected to the pump and tubing was still connected to my arm. I muttered something about this and the gal next to me stopped tugging at my clothing.  The primary nurse (who had brought the commode and each bag of fluids) began RIPPING OFF THE DRESSING from the IV in my arm in one swift motion before I could ask her to go slowly or place my finger over the insertion point to maybe help prevent what would happen next.  Even my husband noted how fast she was ripping off the IV!  The needle/tubing inserted into my forearm became dislodged with the Tegaderm dressing displayed to one side, still stuck to it!  Immediately and violently a searing knife-like pain ratcheted from the back of my right hand to directly to my brain.  Welcome to the increased sensitivity of underlying neurological illness!  Involuntarily, screams of holy terror erupted from my mouth.  Soon Dr. P was standing over me at the foot of the gurney, scolding me some more.  Why?  Just why was he speaking to me this way?  My brain felt like it was on fire.  These sensations and symptoms had become markedly different than those that had brought me to the hospital 3 hours earlier yet were equally severe.  A new type of episode had started. And all the gains I had realized just moments before were erased by that searing pain in my hand.  I was still aware of my surroundings yet powerless to help myself.  The grief in my spirit was great.  I thought I was getting better!

Steve tried to explain the nature of this complex illness to Dr. P outside of the room. I understand that Dr. P spoke graciously to Steve.  That’s nice.  I am glad.  I did not get to experience grace in any form from Dr. P.

The seizing was now a rapid, violent, involuntary tremor. Three nurses insisted that it was time for me to go and started to take off the gown and put on my shirt.  I blurted out that I would do it myself.  I really don’t know what I was thinking when I said that. I do recall being afraid that the sensation of them touching me might add to the hypersensitivity and neurological distress.  Someone brought in a wheelchair.  Another problem surfaced:  my initiation of movement from trying to put on my shirt increased the amplitude of the seizing, violence of the shaking, difficulty pushing out words coherently.  My back arched against my will as screeches of terror erupted from inside me:  half dressed with my bra exposed, crying fiercely, and horrified at the indignity of it all.  (Much later I would wonder if they would have treated me like this if, say, we were working together in home health care earlier that day? I was an occupational therapist for the Network of the main hospital long before I got sick with this wretched illness that no one still completely understands.  Never mind.  No one in that emergency room except Steve appeared to care about me anyways.)

About a half an hour later, I discovered that someone had graciously turned off the lights in the room we were in. Thank you, whoever you are.  And thank you to whomever gave me more time to recover.  We eventually went home.  I felt horrible. Dried tears stained my face.  I was very hungry.  I still had no coat or shoes to wear but hey, my beloved’s car has heated seats and I knew they would warm at least a part of me quickly.  Out into the cold, damp air of night we went.  I was also “shell-shocked.”  I felt traumatized.  Things could have gone so much differently don’t you think?

*********

UPDATE:  It is now about 3 weeks later.  Last weekend an adverse reaction to another medication sent me to a walk-in clinic who sent me to the emergency room of another hospital in another Health Network.  My husband was out of town and dear friends took gracious care of me.  The hospital staff cared well for me.  It now seems like I am finally starting to stabilize, but hey, who really knows what the future holds?  My hope rests in the person of Jesus Christ and His promise to His servant Job who endured far more strife than I can ever imagine.  I end with His words, His promise once again.  Praise be your name and in your name I will trust:  Jesus Christ!

25 I know that my redeemer lives,
    and that in the end he will stand on the earth.
26 And after my skin has been destroyed,
    yet in my flesh I will see God;
27 I myself will see him
    with my own eyes—I, and not another.
    How my heart yearns within me!  (Job 19)

 

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