The Long and Winding Road

Paul McCartney wrote the famous ballad entitled The Long and Winding Road when inspired by the farmlands around his Scottish home.  He wrote it during a time of tension between band members of the Beatles and then it was published in 1970, just after the break up of the band.  I remember being very upset that they were no longer together after changing the popular music scene forever.

This is a sad song.  Tonight I understand the many sentiments expressed within the lyrics that go with this sweet melody:  melancholy to a sense of unmet longing:

When the road goes on too long before you reach your destination or you never really reach the destination you set out to find . . .

Where the twists and turns push you beyond the roadways onto the rough gravel, shaking you up quite a bit . . .

Who comes along with you sometimes wishes they were not there at all then comes around to being alright in your company after all the weary miles together . . .

What you find dashes the dreams you once had, leaving you with emptiness before the Throne of Grace where all roads eventually will arrive anyways . . .

And you shed deeper tears than you ever knew before in your pain and anguish . . .

Such is the song in my broken heart tonight.  All I can say to the God above or beyond is, “I need you now more than ever.  Please lead me back to your door . . . let me know the way.” JJ

So you want to go camping do ya?

Camping is not for the faint of heart, even in the “posh” conditions of a travel trailer! Having a trusty companion or two and the right tools can make the difference between success and failure.  For me that would be the guard dog, handy husband, jugs of water, and very long extension cord.  Gotter done!

Camplite, husband, kayak, Scorpius, rack, roof, outrigger, canoe, man, towing, camper, travel, trailer, home, Nissan, Frontier, camping

I am grateful for our Camplite (aka Tin Can Ranch) that allows me to go places with my hubby and stay in a mobile “clean room,” away from the hazards of hotels and limited choices of restaurant menus.  Preparing for these trips is an incredible amount of work all by itself:  just about the same amount of tasks need to be completed for a week-long vacation as an over-nighter.  I have a sense that we won’t be doing the latter again anytime soon!  Regardless, I rallied the strength and off we went with great expectations to the Illinois Beach State Park north of Chicago, Illinois.  I was to attend the day-long Designs for Health:  A Prescription for Wellness seminar at the beautiful Chicago Botanical Gardens and Steve was to tackle the surf along Lake Michigan.  Later we planned to meet up with some friends for dinner on the north side of the city before heading south around the city and back to NE Indiana into the wee hours of the morning.  Whilst the latter plans were complicated by severe rain and traffic issues for all parties, it turned out to be an “easier” part of our itinerary!

Our wacky adventures began soon after we pulled into the campground along the shores of Lake Michigan.  Up first:  hooking up the electrical.  Not!  For the next several hours we battled a worn breaker system that kept tripping no matter what we did to avert the issue.  Was it the breakers in the trailer that were overloaded?  The eroded contacts in the refrigerator switch plate that requires a few minutes of babysitting to turn on? Figuring this out required much problem-solving with wifey-poo dressed in early Spring/Winter garb, very weary from travelling and following orders from the friendly but not-so-helpful front office staff.  To sort this out, we ran our extension cord to a few adjacent sites to no avail.  Very likely it was the campsite breakers that were worn and not our camper since everything had worked fine at home the day before.  Too bad the real on-site expert had the day off!

Finally my husband figured out two work-a-rounds:  1)  hooking up our battery charger to the battery to run the water pump and 2) running our 100-foot extension cord to a 3rd campsite and through the kitchen area window to run the electric heater.  In the morning I disconnected the heater and attached it to my blow dryer to make some order of the bed head that came with the morning.  What about just taking a shower you ask? Well don’t!  That didn’t happen . . . for me anyways.  The campground did not have water or sewer hook-ups so we had filled our modest, 30-gallon water tank at home thinking it would be enough for bathroom needs with quick “Navy-style” showers.  We were wrong. Steve did get a shower . . . then a paddle in Lake Michigan . . . then another shower in the only open bathroom facilities in the campground.  I made the most of things and had a quick cooooold sponge bath before heading out to the seminar!  Oh well.  I was definitely AWAKE for the day of lectures to follow!

A few other tidbits further enhanced our experience such as Steve gashing his lip on the rusted breaker box in the midst of trying to figure out things!  So glad for our first aid supplies!  Then there was the brand new hot water pot that I had plugged in through the cord dangling in kitchen window to make some hot tea ended up not working; I used an electric frying pan instead!  Additionally I took every remedy that I had with me to ward off noxious symptoms from ongoing illness and to consume before-and-during the seminar (with copious amounts of food-n-bacon, of course).  And guess what?  The seminar was incredible!  Steve had a great time paddling our outrigger canoe 7 miles along the lake shore and the pup got in a few long walks at the beach.  Cool beans.

woman, seminar, Chicago Botanical Gardens, flowers, planter, Designs for Healing, sitting

Forrest Gump logic applies very well to almost all of our camping experiences these past 3 years:  you never know what you are going to get!  This trip was no different.  We are now home and pooped.  Massive loads of laundry and cleaning are now underway to decontaminate everything for our next adventure having something to do with trailer demolishen derby races or something.  With our luck, let’s just hope we don’t end up on the figure-8 track.  Should be fun.  Or maybe not.  I’ll be sure to letcha know.  Eeeeek!

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)

 

Not just another day

In this moment I feel quite normal.  I kissed my hubby goodnight as he drew me close for an extra snuggle before drifting off.  You would think that I would turn over and fall asleep near his warmth and care but that simply was not the case for yet another night . . . That is just not the way things go around here far too often . . .

How come the wretched hellish experiences of mine have become a normal occurrence around here?  Here’s what I mean:

  • Puzzling symptoms lead to medical appointments and tests, passage of time while I research answers, doctor visits for the results, the start of some new treatment, and (instead of relief) the exacerbation of the symptoms we were supposed to be curing!
  • Prescriptions, supplements, special diets, manual therapies, trial-and-error yield results that wax and wane in effectiveness until they are simply useless or make me worse.
  • Professional counseling determines that the origin of this serious illness is not psychological however the trauma of it brings sadness every time and sometimes even triggers memories of every and any bad situation I have ever endured.
  • My beloved’s rising to the cause of caregiving, from chores to feeding or assisting me to the toilet, eventually helps me recover just before he must either leave the house for work or retire for bed with his own case of exhaustion.
  • Expenses beyond belief take away tremendous resources intended for the future:  a time plagued with stress and uncertainty from not knowing when or if these troubles will ever end.
  • Hope can appear on the horizon as I make temporary progress or we discover new medical explanations for my suffering only to have that hope dashed, crushed, and covered with new diagnoses, new complications.

Today was not just another day.  I cannot tell you the grief that I experience after losing one more to continuous convulsive episodes.  This past weekend I missed the lovely snow softly falling outside our bedroom window:  our first major snowfall in the Midwest.  I didn’t get to delight in watching Steve cross-country skiing out our back door with the spirited Elle pup who LOVES the snow!  If I did get out of bed this evening it was with dangerous fright as my body shook, anxiety raged, and my mind calculated if I could do at least one simple task for myself before racing back to bed in a pile of screaming seizure attacks.  Those episodes with respective recovery periods totaled about 15 hours today alone.  Lord have mercy!

This is no where near normal.  Only by the prayers of fellow believers did I get through Friday with 3 different lab procedures, an IV infusion, a doctor appointment, lunch with a friend, mold avoidance procedures, and a trial of a new treatment remedy.  I collapsed into bed for almost 10 hours of sleep without any episodes then BOOM, the next 2 days were largely problematic.  One drop of a new remedy that may have eased my symptoms of Friday made me worse as Saturday turned into Sunday.  Somehow I did get some Christmas cards ready-to-go however!  Wow.  That is simply amazing.

Please forgive me that my tone is angry tonight.  I do not have words of encouragement, scripture to bring hope or any insight as to what the heck is going on with me.  There are new problems with which to contend.  Tonight I am in survival mode.  It’s 3:08 in the morning and I have to get things set up for my home infusion care tomorrow morning:  an expensive treatment of merit I seriously question.  Chronic Lyme disease?  Heavy metal toxicity?  Which one is it already?!  Maybe before I go to bed I will try to finish cleaning a bathroom that I started 2 hours ago?  Surely I will eat some more to try to restore the calories spent screaming and writhing in bed today . . .  At least my back is feeling some better though.  Hooray!

So here’s to Christmas cards getting together and less back pain.  I have a roof over my head and food in the frig to munch on shortly.  My beloved is sleeping soundly and welcomes my chilled feet on his warmed body when I will join him in an hour or so.  Well there ya go.  Some sweet signs of normalcy do exist after all amidst some sweet blessings too.

I just can’t stay upset very long with you listening Gentle Reader.  Thank you.  Here’s a cartoon for you.  You rock!  JJ

bedbugs

The way it should be

We had planned to be in Texas to see my hubby’s family this week for Thanksgiving but it was not to be due to “the illness.”

I had hoped to get some cleaning, shopping, planning, and cooking done days ago but things did not turn out that way.  The cleaning got done at 3 o’clock Monday morning!

The special oatmeal dish that my hubby makes for me when I am recovering from seizures was to be off my special diet right now . . . until I had another episode rendering me too weak to consider anything else.

One afternoon my beloved was carrying me to the bathroom due to a neurological collapse episode and the next day we were working together after dark on winterizing our landscaping.

Alternate plans for a family gathering in Arkansas would have saved us a significant amount of driving but my In-laws decided not to change their plans; my hubby’s parents even chose not to add another “leg” onto their California-to-Texas-and-back trip as we had hoped and discussed.

Lying in bed each day this past weekend was broken up by a few meals in the kitchen, barely recovered from intractable back pain that sent me to the emergency room this past Monday.

My LLMD decided to treat my back with his chiropractic finesse despite my visit lasting 15+ minutes beyond when his timer went off.  He never does that.  I benefitted tremendously.

The new antibiotics prescribed to treat a co-infection of (chronic) Lyme disease has had the effect of increasing my most noxious symptoms instead of alleviating them.  My private pay costs increased $45 each week instead of decreasing as my treatment days diminished from 3 to 2.

The compounding pharmacy is now able to make my prescribed mineral IV treatment after declining the ability to craft the prior prescription, saving us hundreds of dollars and incredible inconveniences travelling to a clinic 2-hours from home.  My home health nurse reports that the new plan meets the criteria of her agency so we can schedule the start of bi-monthly infusions within a couple of weeks.

Two home infusions were cancelled during the transition from one antibiotic to two but my home health nurse was off sick those days that I usually received treatment anyways.

I sent an expedited check to make a payment for the medical bills on my credit card by the due date but the credit union never received it.  Someone named “John” supposedly signed for it but it was never found.  They reimbursed me for both the check and the “stop payment” fee.

I could go on . . .

If there is anything that I have learned over these 5 years of illness is that things are never as they should be.  Well actually I knew that long before 2011 from my work with PEOPLE in healthcare.  Peeps are finicky, change their minds, let you down, show up late or not at all, get sick, get on board with the program eventually, give into emotions over reason, love you anyways, or just plain old don’t care sometimes.  In the end it’s not about the individuals really.  It’s about where I am placing my trust.

A wise pastor (Bill Hybels of Willow Creek Community Church in Barrington, IL) once preached that we are to, “Trust God, Love People.”  Yes indeed.  Our ultimate hope for things turning out the way they should be should be in the person of Jesus Christ.  We are to love everyone else as unto the Lord.  Only He will never forsake us, never fail us, and deliver right on time every time. 

Alrighty then.  This rant is now over.  It is just before sunrise and my nurse will be here in a few hours to administer my care.  I seem past the bewitching hour of the nightly seizure attacks so I will probably try to get a nap of sorts.  Two bags of antibiotics tire me out so I would have needed a long nappy-poo/recovery period afterwards anyways.  I will trust that the Lord’s will will be served once again.  So before I stop making any sense at all, I will end here.

It’s probably the way it should be?  JJ