The Proper Blend

Like a fine wine that melds flavors as it seasons in an oak barrel over time

Everything I do is a mixture of good and the other from meals to enduring “it” all.

My beloved likes his hot sauce, his cheesy toppings and bold flavors along the way

Mine’s gotta be subdued, seasoned with salt from the sea and little else but with ghee.

In the area of health my River Bear gets on the water even on a late wintry day

Where I rejoice if I can wander outside with the pup or try the more mundane of little things inside.

Steve puts up with so much:  dashed plans, travels alone, a romantic night turned into caregiving

Wifey-poo’s illness cancels plans, sours the embrace, changes everything we once held dear, I sigh.

There is no proper blend when dark symptoms fend off many moments of goodness again and again

We just Cape Diem my love, for we know not how long we have anyways as we pray and pray and pray.

Tis a lesson learned to live in the moment, capturing each breath expanded with gentle care

For we never know what may come before the movie credits roll . . . beyond the edge of what we once held so near.

Will deliverance come tomorrow or much later than that with this new thingy again to try?

Like the windows that saw the sun shine on them today, I will wait expectantly on my Lord with my Gentle Hero at my side.

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)

 

Vampire Diaries 4

 

medical mistakes, cell phone, overdose, cause of death, vampire diaries, doctor

How many lives do I have left?

The cat might ask after a near-miss,

Such is my ponderings this night

As yet another disaster was thwarted.

They sent me meds altered in color

In different bags than I had known

An infusion today would have doubled the dose

And sent me aloft to never-never land.

I caught it at once (albeit rattling my cage!)

Quickly they offered to cover their tracks

Shall I trust them once more this time, alas

They have made less grievous errors before . . .

Feels like the night I saw the angels came

Surely life is marked for more than this (?)

The suffering has been great despite the holiday

With less beatings today (yeah) guess my brain’s awake.

Carry on as this life drones with the beast chronic Lyme

Drugs, pills, tinctures, creams, shots, IVs, diets,

Saunas, flushes, therapies, back crackers, tests

The list goes on as the procured money bags yet drain.

I guess it’s all meant to be like this alright, eh?

When hazy is the road hanging onto my Lord’s cloak

Hoping for an infusion of, well, hope not more strife

I cry, “thank you Jesus for Your Divine grace once again.”

Maybe soon may we get in a little more playtime than this?  JJ

 

For the Downtrodden

Having a bad day?

Let the words of the Lord wash over you and see where you land after that.  Just took me to a better place.  How ’bout you?

Psalm 107 (NIV)

Give thanks to the Lord, for he is good; his love endures forever.

Let the redeemed of the Lord tell their story—those he redeemed from the hand of the foe, those he gathered from the lands, from east and west, from north and south.

Some wandered in desert wastelands, finding no way to a city where they could settle. They were hungry and thirsty, and their lives ebbed away. Then they cried out to the Lord in their trouble, and he delivered them from their distress. He led them by a straight way to a city where they could settle. Let them give thanks to the Lord for his unfailing love and his wonderful deeds for mankind, for he satisfies the thirsty and fills the hungry with good things.

10 Some sat in darkness, in utter darkness, prisoners suffering in iron chains, 11 because they rebelled against God’s commands and despised the plans of the Most High. 12 So he subjected them to bitter labor; they stumbled, and there was no one to help. 13 Then they cried to the Lord in their trouble, and he saved them from their distress. 14 He brought them out of darkness, the utter darkness, and broke away their chains. 15 Let them give thanks to the Lord for his unfailing love and his wonderful deeds for mankind, 16 for he breaks down gates of bronze and cuts through bars of iron.

17 Some became fools through their rebellious ways and suffered affliction because of their iniquities. 18 They loathed all food and drew near the gates of death. 19 Then they cried to the Lord in their trouble, and he saved them from their distress. 20 He sent out his word and healed them; he rescued them from the grave. 21 Let them give thanks to the Lord for his unfailing love and his wonderful deeds for mankind. 22 Let them sacrifice thank offerings and tell of his works with songs of joy.

23 Some went out on the sea in ships; they were merchants on the mighty waters. 24 They saw the works of the Lord, his wonderful deeds in the deep. 25 For he spoke and stirred up a tempest that lifted high the waves. 26 They mounted up to the heavens and went down to the depths; in their peril their courage melted away. 27 They reeled and staggered like drunkards; they were at their wits’ end. 28 Then they cried out to the Lord in their trouble, and he brought them out of their distress. 29 He stilled the storm to a whisper; the waves of the sea were hushed. 30 They were glad when it grew calm, and he guided them to their desired haven. 31 Let them give thanks to the Lord for his unfailing love and his wonderful deeds for mankind. 32 Let them exalt him in the assembly of the people and praise him in the council of the elders.

33 He turned rivers into a desert, flowing springs into thirsty ground, 34 and fruitful land into a salt waste, because of the wickedness of those who lived there. 35 He turned the desert into pools of water and the parched ground into flowing springs; 36 there he brought the hungry to live, and they founded a city where they could settle. 37 They sowed fields and planted vineyards that yielded a fruitful harvest; 38 he blessed them, and their numbers greatly increased, and he did not let their herds diminish.

39 Then their numbers decreased, and they were humbled by oppression, calamity and sorrow; 40 he who pours contempt on nobles made them wander in a trackless waste. 41 But he lifted the needy out of their affliction and increased their families like flocks. 42 The upright see and rejoice, but all the wicked shut their mouths.

43 Let the one who is wise heed these things and ponder the loving deeds of the Lord.