So much to consider

So we come to a crossroads, my beloved and I

From where will we go from here to continue my care?

No cure hath cometh from a year of killer drugs within

Five years of tortuous suffering with costs beyond compare.

We don’t know why the trauma continues to this day

Whether it will continue or end?  There are no promises

That when we show up in this life that all will be grand

But shunting the yearn for heaven my dear, the treats beyond.

Today I am tired but stable, weak but reflective

Grateful for so much while I ponder theses woes . . .

My beloved is sweeter than honey

His warmth a comfort to my hol-ey bones

He loves me deeply still; I see it every day

And life’s sweetest:  love from this man I have come to know.

Alas I search the scripture and find that even Job

Needed to trust in the Lord not knowing why

His suffering exceeded the faith of his friends, his kin

When all was really a battle within the spiritual realm

Having very little to do with his past, to do with him.

So in the seasoning of the late missionary, Helen Roseveare

“Can you thank me for trusting you with this experience

Even if I never tell you why?” God asked of her in the midst of terror.

“He doesn’t have to tell us why,” she would learn

“But He often does in His gracious, loving mercy,” for sure.

So I will seek the perspective of the privilege

It is to be used in this life by the Lord almighty

Relinquish my frame to His plan and outrageous love

Then wait and see:  He is worthy.  My response:  humility.

JJ

God, sun breaking through clouds, sunrise, sunset, storm, hope, rays of sun, sunshine, clearing

 

 

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)

 

Just doing my job

occupational therapy, O.T., home care, home health, assistant, therapist, accessibility, tub transfer, adaptive equipement, Hope Beyond, therapist heal thyself, tub bench, transfer, gait belt, bathroom treatment, therapy
An O.T. assisting a client in a tub transfer using bathroom safety equipment.

When I was working in my career as an Occupational Therapist, I coined the following phrase to describe my role to my patients and their families:

An Occupational Therapist takes a look at how a person occupies his or her time and the skills needed to get through the day.

This definition worked well, given the diversity of populations, conditions, and treatment interventions utilized in O.T.  Having a simple, quick definition helped me better communicate my 30+ years of licensed and skilled interventions from a variety of treatment settings that might be called upon at any stage over a course of therapy.  Together we then crafted a course of action to get the person back into his or her life as best as possible.  Funny how the person that may have benefitted the most from all of this is the one writing to you this evening . . .

Recovery from a serious illness has been a case of the phrase “therapist heal thyself” coupled with the expertise of a few other licensed professionals.  My part was to study, research, document, evaluate, revise, manage, and just hang in there by my fingernails to get through these past 4 years.  However I will credit the Lord, Jesus Christ for providing the courage and hope that my husband, Steve, and I needed to actually start seeing some progress.  And guess what, it is starting to happen!  The Lord has allowed recovery to begin!

Six weeks ago I began an ongoing, intensive course of IV antibiotics for the treatment of chronic Lyme disease.  In the interim I experimented with liposomal melatonin, 5-HTP (a precursor to serotonin), and now CBD oil (from industrial hemp).  I believe it is that latter that have helped to move my sleep/wake cycle from that of a brown bat to a gal that is just slightly a night owl.  I am starting to dream again and have a little more energy, clarity of thought.  Also the years spent chasing down mercury toxicity, mold illness, dental issues, and secondary infections have prepared me to tolerate this level of intensive treatment.  Are you ready for the biggest change of all?

The two to five hours per day of violent convulsive episodes is diminishing in intensity and duration!  This has been consistent for about two weeks now.  PRAISE THE LORD!!!!!!!!!!

We are thrilled for some positive change in my condition!  We are now hopeful that the powerful doses of antibiotics will help kill the Lyme bacteria and co-infections likely causing the seizure attacks and other noxious symptoms.  Whoa.  So how do I fill my days?  I am continuing my full time job of daily detoxing, preparing  a specifically crafted diet, maintaining a detailed treatment log, medical appointments averaging daily, supportive relationships, study-and-research, medical treatments (some complications came with the IV treatments), connecting online to forums critical to these efforts, the “stuff of life,” and taking a walk at least once per week.  Maybe this week it will be twice?  Yeah God, the pup will love that one!

Like in the past, right now I am just doing my job.  I am grateful that the Lord saw fit to lead me into the profession of occupational therapy as it provided me the skills needed to manage the mechanics of this illness.  Along the way my beloved Steve has been the greatest friend, confidant, witness, and spiritual leader that I could have ever asked for to walk this road with me.  He has labored tirelessly night and day for me, for us.  Thank you Jesus for Steve.  There are many unknowns and many more months of treatment yet to follow for sure.  No problemmo.  With my Lord and Savior at the helm, I will be fine.  Lord willing, I am going to get well!

Just thought you might like some good news from the “Hope Beyond” blog, eh?  Take care Gentle Reader.  And thank you for your support.  You rock!  JJ

From the Do It Sick Chef: Oatmeal!

Hey there Gentle Reader:  we all gotta eat right?  Well who likes a one-bowl meal that will satisfy your cravings for something sweet, savory, fatty/rich, and satisfying?  Me!

Check out this version of oatmeal that is good enough for a breakfast, lunch or dinner feast from the Do It Sick Chef (aka Just Julie).

To follow all of the Do It Self Chef videos and join in the chat, “Like” my Facebook page at Hope Beyond.  I’d love to hear from you and the strategies that are working for you while recovering from serious illness or just life in general, eh?

By following this blog and clicking on the Do It Sick Chef category, you can also keep track of the latest meals, tips, and survival strategies.

Lord willing, we are going to get well!

Take care, JJ

How do you measure a year?

September 18, 2014 was a day when I rediscovered the power of friendship at a new level.  ‘Tis fitting that we would spend our time reading the Psalms as we shared our lives with each other then tenderly prayed together.  Perhaps this is what women who love the Lord Jesus Christ do, eh?  Except that we were not meeting for a weekly video Bible study at church followed by coffee and treats.  This one touched our hearts more at home . . . literally!

In the past I have enjoyed Bible studies the best when we all meet in each other’s homes.  There is no better way to fellowship than to be immersed in the family pictures, dog hair, and dirty dishes of the ones you come to love in Christ.  In due time the host and hostess let go of having a clean house for everyone each week as we focus on what is really important:  opening up the truth of God’s word.  Prayer time was always my favorite.  The bonds between us became palpable as we lifted up each other’s hurts and victories before the Lord.  I do hope we glorified Him in doing so.

When serious illness struck my life October 11, 2011 my life slowly changed to one of almost total isolation.  Oh there were many visits to medical professionals, clinics, labs, hospitals, and pharmacies.  They were all very nice people, of course.  Going to Walmart became a rare “date night” with my beloved husband when I could not drive myself.  The highlight of my week often became buying groceries; somehow I ended up spending a little more money there than I probably should have perhaps in an attempt to find some alternative type of comfort.  Somehow new pair of sweats or comfy top would jump into the shopping cart on occasion as well!

Then the Lord inspired me to break the isolation beyond this blog.  I had some casual connections to a few of you Gentle Readers which delighted my soul, by the way.  How could this become more personal?  I published a blog in September of 2014 asking if anyone would be interested in starting up a Bible study/prayer time via Skype?  Perhaps there were other gals out there who were largely homebound like me and ready to connect before the Lord’s table.  Two gals graciously responded:  YES!

Each of us had different reasons for coming together.  Each of us had our own blogs and followings, outside interests, and experiences with our health.  We represented 3 different decades of life, 2 different countries and States, living situations either outside larger cities or in the country, and only one blonde.  (She is gonna kill me for writing that!)  We bonded quickly.

One gal who joined our group to be an encourager ended up facing one of the biggest health battles of her life this past year.  Two of us went in and out of relapses with illness and one endured a major upheaval in her husband’s job situation.  Two of us have also met face-to-face twice with hopes of a giggly reunion of all three of us perhaps this year?  I hope so!  Together we (have) cried, we laughed.  We prayed; we shared silly stories.  There were exchanges of recipes, websites, scripture, and more. We were encouraged by the love stories of the Psalms ministering to our feminine hearts.  And most of all we became friends.

So how do you measure the value of a year in life?  As this passionate theme song from the movie Rent speaks of sunsets, cups of coffee, laughter, and sighs, I do know that on Thursday night we three have shared them all this past year.  I agree with the chorus line to:  measure your life in love.  Because of you my dear ones, my year was richly blessed!

Thank you ladies for changing my life and ministering to me in a way that has made a difference.  May the Lord be glorified in all that we say and do, all that we write, and in the prayers that we lay before His throne of grace each week.  In the meantime,

“I am going to Rome.”

You two know what that means!  Happy one year anniversary!

Seeya next time ladies.  Love you, Julie