Our God Reigns!

Seeing this sweet perching of morning doves is such a mixed blessing this morning.  They are able to sit there because yesterday I was able to cut down the massive out branching of a clematis from lower on the trellis.  Also washed the flagstone patio of dirt and some algae.  I should have worn a mask for both projects.  Acute sickness and violent convulsive episodes followed within the hour and at the beginning of a sweet Skype call with my hubby’s son and family.  So sad.
However, the experience was diagnostic in that I am dealing with biotoxin illness now more than anything else.  Also I am tolerating targeted treatments for this for the first time in 4 of these 5 1/2 years of illness.  Lord willing, I am going to get well!
Gentle Reader, let the morning doves portray the hope that I have each new day in my Lord and Savior,  Jesus Christ.  No matter what may come, our God reigns!  Very fitting the week before Easter don’t you think?

JJ 

New Skills

1 Corinthians, believer, Christian, not be wasted, don't give up, hope, not in vain,

If I had to create a resume today the contents would be a bit different for these past 5 years.  Web design?  Yup.

When I get concerned that my professional skills have eroded, I remind myself that life is measured more than by occupational achievements.  Later I will write about the journey for meaningfulness that led me to simply trust the Lord with each moment, each day.  For now perhaps what they used to call a “Functional Resume” is in order?  So here I submit a list of new things for which I am grateful to have learned despite being sick every day for over 5 years.  Surely the time was not wasted!

Developed 5 websites:  1 on Etsy and 4 on Word Press.

Self-published an eBook, Hope Beyond Lyme:  The First Year.

Taught myself how to make macramé and handcrafted jewelry, developed Trinity Jewelry by Design, sold hundreds of pieces online and at 5 events, then sold the business 2 years ago.

Learned about Lyme disease, mercury, Candida, seizures, epigenetics, biologic dentistry, shingles-and-other viral infections, biotoxin illness PLUS their respective testing and treatment protocols.

Learned about social media, ecommerce, blogging, Pinterest, Twitter, LinkedIn, Yahoo-and-other online forums, Skype (formed a prayer group), basic video production, online banking/PayPal, how to use a smart phone with Apps, and the like.

Became an Advanced Master Gardener.  Achieved the highest-star rated sustainable garden at our home.  Finally harvested our own blackberries!

Experimented with special diets for health:  ketogenic, low oxalate, low glutamate, gluten-free, SIBO, and the usual dairy/sugar/sweetener/mold-free diets.

Became an Assistant Editor to my Editor/Husband for the quarterly publication Canoe News of the United States Canoe Association.  Learned the basic features of MS Publisher and PowerPoint.

Experimented with various methods of detoxification for health including full spectrum infrared sauna, colon hydrotherapy, Epsom/mineral salt baths, lymph massage, and various binding agents (zeolite, benonite clay, fulvic acid, Intestinal Metals Detox, acai fiber, cholestyramine, chitosan, Welchol, etc.).

Learned about environmental toxins, extreme mold avoidance, types of masks to reduce exposure, cleaning strategies, remodeling, and more.

Implemented energy conservation, work simplification, home safety, accessibility, and novel coping strategies (that I used to train my patients!) to manage changes in my physical abilities.  Trained my husband in same, often in times of medical crisis.

Began a “telehealth” arrangement for part of my healthcare with a naturopath/genetic coach out of State.

Learned to camp in a travel trailer with my beloved hubby, Steve, and our German shepherd pup, Elle.

I bought my pick up truck 5 DAYS before I got sick.  Quickly, I learned to drive a truck then how to pull a trailer, haul stuff, and manage a 4-wheel drive vehicle.

Learned basic upholstery crafting to make all new cushions for our travel trailer and two custom cushions for a medical office.

Successfully navigated a complex and long disability case despite ongoing nightly  seizure attack episodes frying my brain at times!

Perhaps there is more yet I will stop here.  As an occupational therapist, I am trained to assess the life skills of my patients and how these are affected by his or her medical condition or disability.  Its as if the Lord knew that I would need the very skills of my profession to handle the devastating effects of a complex, serious illness 30 years after my career began.  In the past I’d often “re-invented” myself at work, moving from mental health to rehabilitation then home health care.  My work included contract work, consulting, and even a public speaking program called the Living Safely ©Program. Just about everything that I ever learned in my profession has helped me to cope and begin to overcome my current situation.

So when I shed a few tears for the setbacks that come, like last night, they simply do not last very long.  Or at least I can clear my mind more quickly than in the past.  Gratefully, I have other things to think about other than illness:  things I can still do when I can get up and get moving again.  And maybe, just maybe, when the seizures stop for good, all of this learning will bring glory to my Lord and Savior as He has helped me get through each moment . . . oh and Stevers too of course!  My husband is a saint!  And very wonderful.

Be encouraged, Gentle Reader.  Lord willing, I am going to get well!  I will be praying for you too this night.  Let’s hang in there, k?

Take care,

JJ

Psalm, 73, 73:6, God, heart and my portion forever, Lord, sustains, sickness, hope, always with me, Holy Spirit, trials, coping, Christian, believer, Jesus Christ

Revelation, 21, 21.5, make all things new, believer, Christian scripture, hope, help

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)

 

O.B. Panties and an HGTV Hangover

Are you going to love it or list it?  Are you ready to see your fixer upper?  I just don’t think this kitchen is big enough for me!  This will all have to be torn out and redone!

And so goes the thoughts in my head the day after being discharged from the hospital.   Since cable TV was my only steady friend and we don’t have cable TV at home, we got really well acquainted in the past 3 days.  I am convinced now that the wood floors in our home are stunning and that we can stay put for awhile longer.  Wood floors are on-trend these days dontcha know?

I also learned that O.B. elastic panties secure blankets over hospital bedrails really well!   When you are on “Fall Precautions” and have a history of seizures, they pad the bedrails with them.  The only problem is that I am sure that wrapping blankets over metal bed rails hardly meets JCAHO requirements for prevention of injury!  They outta have provided bed pads.  Oh well.  Welcome to the modern hospital complete with a 20+ year old hammock sling for a mattress.  Otherwise, the food filled my belly and care was alright.

I was in the hospital after an urgent trip to the Rapid Care Clinic associated with my doctor’s office sent me there on Sunday.  The Internal Medicine Doc said I could get an evaluation from an Infectious Disease Specialist there (which I was later promised in the ER as well).  That never happened.  What did happen was getting pumped with a plethora of drugs that created nausea for the first day and one-half, exhaustion from side effects and lack of sleep, weight gain from 4,000 cc of fluid and food-snacks-with-every-drug-to-protect-my-tummy, and a lesson in humility.

Regarding the latter, I learned that Nurse Practitioners and Physician’s Assistants run the modern hospital in America these days.  Or at least they do for what happens bedside.  I saw both types of professionals; they got to talk to the Infectious Disease Doc but I did not.  Turns out that my acute case of shingles had been seen before so they treated me “by the book.”  Never mind my history of daily seizures and concern for the brain-swelling complications that can come with the worst cases of shingles:  a disaster potential which could change my life even further, forever.  Thank you Lord that I had called the Ophthalmologist on-call the night before and gotten the treatment needed to protect my eyes from the herpes zoster virus.  It is through the blurry vision of an eye ointment that I chat with you today!  The hospitalists never mentioned protecting my eyes from the spread of this nasty, searingly painful viral infection . . .

So I did my time, got my drugs, stabilized a good part of the intractable pain, and got sent home with:  red lesions and swelling on the right side of my face, a 4th day of constipation, lots of prescriptions for drugs and OTC meds, and a renewed sense of what it means to NOT be in charge of your own life, your own healthcare.  I did get to ask questions and for that I am grateful.  I did receive my Lyme infusions of antibiotics before I left to continue that part of my treatment and for that I am grateful.  I tolerated a peripheral line for 3 days without skin irritation and for that I was amazingly grateful.  I did catch up on HGTV enough to last me a good long while and for that I am grateful.  And I was reasonably able to tolerate a modified, hybrid version of my diet from the hospital menu and for that I am grateful.  I was alone for those 3 days and 2 nights yet my Heavenly Husband was always present and for that I am grateful.

There are two other tidbits to note:  I met a lady while walking the halls who was in the hospital for pneumonia.  She’s a smoker and familiar with Jesus Christ whose birth we celebrate at Christmas.  I shared with her a short testimony of how the Lord appeared to be orchestrating the meds I was given during that hospital stay to possibly treat the serious seizures I have been suffering for 5 years.  Please join me in praying that the person of Jesus Christ would become real for her as well:  as her personal Savior this Christmas.

My second point was hidden in the first noted above.  Did ya catch it?  Yes, I have not had a seizure since coming home from the hospital and had WAAAY FEWER since taking Neurontin in the hospital.  Neurontin is not typically given for Non-epileptic seizure episodes but hey, it is commonly indicated for shingles.  Win-win?  I am hopeful.  What if these 5 years of suffering daily episodes are about to end?  It is too soon to tell how this will proceed going forward yet I am grateful for my little Christmas week reprieve for sure!

Merry Christmas to you, Gentle Reader.  Be sure to check out the Christmas Letter from Steve and me posted today as well.  Even in the dark times there is hope since the Light of the World has come as the person of Jesus Christ.  Oh I do hope that you will share with me in knowing this joy today!

And keep an eye on your panties, eh?  JJ

maternity, pregnancy, other uses, panties, underwear, adapted, stretch

 

Coming out of the fog

I just might be coming out of the fog

As I hit the 5 year mark of shroudedness

When some bugs in greenish water back then

Everyday put me under severe, daily duress.

I could sell you a book of

Five hundred blogs and two links

With tales of woe then and now that’ve

Filled webpages as I tried to keep on my “think.”

This forum here, now with you this Autumn night

Kept me sane so the cells in my brain did not go to mush;

While firing wacky-backwards without ceasing at times

For waaaaaay toooo long without hope of a rest with a cush.

Looking back, looking forward

And thinking it over some more,

I see da light coming through darkness:

The kind that stays and covers all.

Tis healing that’s on the brink to stay

If I but finish the course with everything

It takes what it takes and it ain’t over they say

And they’re right, “until the fat lady sings!”

Now I ain’t too fat or that big into musical things

There’s more dirt under my fingernails than bylines

Bits o’ gardening, sewing, medical cooking fills the

Hours not counting Heparin and saline syringes.

No matter anyways, anyhoo, anyhow

It’s just the way it went, the road less travelled by

I will be stronger for it in the end they say (and they know)

In due time, Gentle Reader, with the Lord we’ll one day know why.

JJ

Julie Horney, Lyme disease, get well, recovery, healing, gratitude, end of the road, end of the journey, smiling, woman, park, Rogers-Lakewood

Resting with mask in hand by a scummy lake here in Indiana!