Frequent Flyer Miles

Hospital Christmas Tree, hospital, medical, ID, identification, patient, band

Travel frequently with any major airline and before long you will accumulate Frequent Flyer Miles.  Gather enough points and you can start planning a getaway weekend to someplace warm or maybe remote enough to forget the cares of everyday life.  Oh how I want to cash mine in soon . . .

So I walked into our neighborhood hospital for a test and the gal at the reception desk greeted me by name!  She had my red radiology folder already in-hand, clearly expecting me at any moment (with most of my “HIPPA” paperwork already started!).  Talk about customer service?  Er, no.  More likely it’s a function of my frequent visits to medical practitioners and departments within the past week:  SEVEN OF THEM!

It’s the week before Christmas so I thought I would photograph a few hospital I.D. bands within the bright green branches of a Dwarf Mugo Pine.  Kinda looks pretty, doesn’t it?  Ugh.  I digress. I’m alright, Gentle Reader.  The choking coupled with increased nightly seizures turned out to be symptoms of a sinus infection and all are gradually subsiding with a course of antibiotics.  I’m getting back to baseline.  Too bad they don’t award Frequent Flyer Miles for taking care of yourself or enduring a bumpy flight!

Overall, I am grateful to have these healthcare “destinations” to guide me along my journey towards recovery.  Various medical appointments are my daily occupations of late, mixed in with wrapping a few gifts and trying hard to focus on serving others in this season of giving.   It really does help to put your eyes on the needs of others to help lessen the burden you may be carrying.  I was reminded of this in the middle of this past week, sitting alone in the chapel of our local hospital.  Ever visit one?  They are a sweet oasis when needed.

Thank you my Lord, Jesus Christ, for meeting me there in my own time of need.  So glad you always take a flyer on me when I call . . .  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

It tops the list

We all have times that define who we become:  turning points such as the day we got M-arried, came to C-hrist, experienced a T-raumatic event, W-itnessed the passing of someone we dearly loved, or maybe we I-nherited some money.  I have experienced all of these and some more than once!  I will leave you hanging on which one(s) have occurred more than twice!

Tonight I will publish the big “T” list for the most traumatic events I have experienced in 2 sub-categories as follows:

Emotional Trauma.  March 4, 2003:  The night my former spouse left me.

Physical Trauma.  December 18, 2016:  The afternoon a case of shingles took hold in my face.

Gratefully the gifts of time and good counsel have allowed the first one to fade over the past 14 years.  I have a wonderful husband now who loves me beautifully in my “intended beloved” Steve.  He has witnessed and endured the second big T with me two weeks ago.  I think we are both still in a bit of shock as I continue to recover.

I had just been diagnosed with shingles on Friday, December 16th in my doctor’s office.  (Shingles is a flare of chicken pox in adulthood triggered by severe stress.)  Dr. J prescribed an anti-viral medication and sent me off to the grocery store pharmacy to pick it up.  Within a day I started to itch and the pain in my right jaw was ramping up; the lesions on my face began to get bigger and blister.  Various remedies here at home were not making any impact.  I began increasing my dose of Ibuprofen to near-prescription levels to be able to sleep.  By Sunday I was holding the right side of my jaw and ear canal in agony and taking double the OTC dose of pain meds every 6-8 hours.  I thought that maybe I needed a chiropractic adjustment to treat the wrenching my neck from the daily seizure attack episodes.  However, the interim massage or stretching techniques were not working; heat or ice made everything much worse.  I sat in our sauna for awhile and had a rash by the time I was done.  What was going on?

Nothing really prepares you for the cruel, searing, unrelenting pain of shingles when it erupts in sensitive areas of the body!  I started to scream when the pain randomly pulsed up like a lightening bolt cutting through my jaw and ear.  I called our local Rapid Care Clinic and figured out how Steve and I would need to get there before it closed at 2:00 p.m. on a Sunday.  The internist who saw me marveled at the lesions that were now worsening both inside my mouth and on my face.  The rash was from the Valacyclovir (anti-viral).  He sent me to the hospital . . .

Even a crow bar might not have been enough to wrench my hand morphed into my face in a feeble attempt to control the pain.  Excruciating stages of waiting followed.  It would be EIGHT HOURS from my last pain medication at home before my first dose of Torodol in the ER (that did NOTHING, by the way!!!).  It would be an  additional FOUR HOURS before I would receive Dilaudid in my hospital room that brought relief and another day and one-half of nausea that broke through the Zofran administered to counter it.  Four liters of fluids ran through my veins over the next 3 days.  I held back portions of food on my bedside table to try and protect my stomach from the two new anti-viral medications, gabapentin, and prescription-strength Ibuprofen needed to manage my symptoms.  I slept 3 broken hours each night.  The foam ear plugs didn’t work.  HGTV got me through a drugged, constipated stupor.  I was so very sick.

I will never forget what happened in the tiny room in the ER where Steve and I landed that Sunday afternoon.  The room was so small that the gurney was positioned on an angle.  There was no call light and medical supplies were stuffed in open shelving within reach of each of us.  That’s not right!  A doctor eventually came in and started questioning me as if he had just met me in the hallway outside the gift shop.  “Did you not get report from the Rapid Care Clinic or internist who sent me here?” I blubbered.  “All of my allergies are in your computer system,” I tried to state while keeping some semblance of composure.  He left to go check as if to bow at the end of a chat at a wedding reception.  Unbelievable.

We tried to remain calm.  There was a lot of commotion outside our closed door from the activities and people moving about beyond it.  Hours were passing.  I had never had children before so the pain of birthing was not in my memory.  They do say that the pain of shingles is worse but I really do not know that personally.  Steve appeared numb with exhaustion.  We have both been through so much trauma over the past 5 years of my nightly seizure attacks, tens of thousands of dollars of medical expenses, lost holidays/events of life together, cancelled dreams, permanently altered sleep patterns, maddening chemical-avoidance activities, and existence from one crisis to the next but even so, we were not prepared for this night.

Then I completely came unglued.

Blood-curdling screams erupted from the depths of my soul.  Wails of grief were so deep that my entire body twisted and extended against the bed as heavy tears burned my scorched face and dampened the sheets, my clothes.  (I would end up wearing my sweats that way for the next 3 days.)  I could hold on no longer!!!  For a brief second I was able to glance at Steve as I gasped for air.  I never want to see that pained look on his face again as long as I live.  His fingers were stuffed into his ears to protect his hearing.  I was that loud!

Someone burst into the room to see what was wrong.  I could not speak, just screech!  It hurt my good ear and infected ear alike.  I could not stop except to push air into my lungs by thrusting out my chest wall.  Soon came the IV Toradol and it did nothing.  Back on my allergy list it went.  There was a chance that it would help this time.  It did not.

Still groveling, gasping, yelping in pain, someone eventually wheeled me out of that tiny room, onto a cold elevator, up a couple of stories, and into a room outside a noisy nursing station somewhere in that massive medical center.  Room 475.  Then Steve and I were alone.  Actually I don’t remember where he was.  I could not stop the yelps and hot tears as a rather disturbed-looking nursing assistant tried to help me to the bathroom around yet another angled hospital bed, infusion pump in-tow.  [Two weeks later I would learn a possible relationship between urinating and relief of seizure attacks as each relate to the issue of dehydration.  (See https://justjuliewrites.com/2017/01/03/hydration-is-key/ for more discussion on that topic.)]  More agonizing hours brought a nurse with another pain med on my allergy list but I did not care.  The torture finally began to come down some for the first time in half a day.

What remained was a shell of a man and his wife who kissed goodnight in that darkened hospital room.  The acute phase of the Physical Trauma was coming to a close as the chronic phase of shingles was to begin for me:  now officially labeled a “medically complex patient.”  There have also been complications of severe constipation, mouth sores that spread to the inside of my mouth and throat OPPOSITE the herpes simplex inside-and-herpes zoster outside on the right side of my face.  The body rash on my torso and forearms that accompanied the Valcyclovir spread to my groin on the right when the anti-viral medication was changed to Famciclovir.  Eventually the Hospitalist/Physician’s Assistant (because I never was allowed to see an Infectious Disease Doctor as promised you see) agreed to let me try Acyclovir with an OTC remedy just hours before discharge from the hospital.  I am still on it and tolerating it.  Whew.  Most importantly, the new combinations of medications controlled the worst of the facial pain.  Two weeks later I have started to sleep more hours in a row!  Woot!  Woot!

Interestingly, I was spared virtually any neck or back pain during the entire ordeal.  I had been in the ER earlier in December with intractable back pain.  Good golly!  Hydration and the use of new antibiotics for the treatment of Lyme disease probably played a role in both the flare and alleviation of both events.  Go figure.  Or maybe it was those simple back exercises I had started in the middle of the night before going to bed that did the trick?  Who knows?  I am grateful to the Lord for some sparing during this crisis, these crises.

The Lord is like that you know.  While he promises there will be trials for Christians during our lives, he also promises that they will have purpose and meaning in His plan for our lives.  There will be grace and goodness along the way (ie. HGTV hospital hangover!).  Jesus Christ grieves over our suffering and knows it too from His beatings, stabbing, death on a cross.  I will never know the amount of Physical Trauma that He willingly endured for me, for us when He died in our place for our sins.  And one of His own, Job, endured much more with tragic losses and boils over his entire body (not just his mouth and face), before the Lord blessed him immeasurably, restored his life anew.  After the Emotional Trauma noted above from 2003, I got to experience this kind of blessing.  That gives me hope with the more recent Physical Trauma.  Knowing all of this is helping me to rebuild, heal, go on from December 18, 2016.

Gentle Reader:  to whom will you turn when your time of testing comes?  I hope and pray that you will turn to the person of Jesus Christ:  our Redeemer Who makes all things new, all things right, all things good.  Even in the worst case scenarios of life, we won’t be suffering forever you know.  Our pain will not be wasted.  How about if we spend our lives worshipping the Lord together?

My God is Jesus Christ.  I can’t think of a better Person to place at the top the list of who I want to spend eternity with when the time comes.  It might even be soon ya know . . . JJ

 

 

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