The Boomerang Effect

The wooden angle sitting on the mantle was a souvenir/gift from the Land Down Under.

To toss it into the air and have it return in-flight to you is a skill few master.  We didn’t!

Instead we dust if off because it looks nice:  forming a paradox in design and practice with which I can relate tonight.

Here’s why.

boomerang, wooden, life, metaphor, like, things come back, return to you

A trip to our local hospital began after much preparation and somewhat tense spirit too.

Would the appointments go alright such that I could return home and rest before a party this evening?

I brought with me several “rescue remedies,” food, water, favorite medical supplies, etc.

Having my port flushed last month went reasonably well so this one today should too.

Not.

I’d been battling Small Intestinal Bacterial Overgrowth when some labs indicated liver stuff too.  My Doc was willing to order a test over the phone and both would be today.

The liver/gall bladder/pancreas ultrasound could irritate a tender tummy for awhile.

Worse came a “tic attack” with the realization that there are several tender spots.

Gratefully, recovery came quickly and I was off to the outpatient clinic for the flush.

The nurse completed everything slowly as I’d requested; my preparation was flawless too.

Can you ice your chest wall while having an ultrasound, apply numbing cream before leaving home, and finish your breakfast/morning supplements in the waiting room between appointments running only 8 minutes late too?  Sure you can!

But 8 minutes past the hour was too late.  With everything that went wrong, the process would take OVER SIX HOURS!

The nurses there are saints as they let me sit in that treatment chair forever if needed.

Something about that 1 1/2 inch needle plunging into my port never has bode well with me.  Or was it a slight change in tissue gradient from fluids and a blood thinner going in?

The procedure was completed and I thought I was going to be o.k.  Then I started shaking.

The shaking continued for over THREE HOURS!  Several convulsive spikes joined the mess.

Gratefully my beloved Stevers was able to leave work early, go home, and bring me an emergency dose of steroid medication at the hospital.  He was my hero once again.

Within 15 minutes, the episode stopped.  I lain in that recliner chair in shock for a long while.  I wept some too.

We moved to the lobby where I devoured my last bit o’ snack and began to revive.

Once home, I rallied to help Steve get out the door to the party with gifts, dish-to-pass, yada, yada, yada hoping to join him later.  Another FIVE HOURS LATER, I did.

Last year I was too sick to attend a gathering with these friends from out of town.  My beloved sent me a video back then of the kids opening their gifts.  Bittersweet.

This year I got to see most of the kids for a few minutes and all of the adults.  Twas sweet.

Another victory was being able to visit in a home with a history of mold damage.  Huge!

The First Defense Nasal Screens (See Julie’s Favorites), open windows on a cool Spring evening, and progress in reduced reactivity all appeared to help.  Thank you Lord.

My plan was to stay in the moment, just enjoying the light banter and updates from all.

No matter that no one asked me much about things.  I love them in Christ just the same.

So I live a Boomerang life, moving from wretchedness to sweetness often within hours.

I could brood the day long or keep my pretty tops sitting in a closet like that dusted toy.

Instead if my Lord grants the where-with-all to get back into life, moving ahead, slightly forward,

I will trust in His strength.  I will do it.  I will get there.  And like the boomerang thing, the trip back will cancel the trip out that maybe wasn’t so good.

For we will face trials in this life, those of us who believe in Christ Jesus. The real question remains:

Will we stay on the shelf when the flippin’ craziness is done?  Nope.  Not me.

I will get out and try to have some fun!

Treatment Update

Time for a treatment update and some good news!  Yes, things aren’t as bad.  🙂

My major focus with my health since I started this blog has always been to stop the residual, daily convulsive episodes that have plagued me for over 5 years.  More recently my treatment plan has centered around treating a gut infection that appears to be related.  Some call it Small Intestinal Bacterial Overgrowth (SIBO) and specifically for me it might be due to a clostridia species infection.  Regardless, the gut-brain connection is real and affects neurotransmitters in the brain.  A myriad of neurological issues can result when these chemicals are deficient or out of balance.  Specific medications and nutritional supports directed by a functional medicine doctor in the past nor my genetic coach/naturopathic physician more recently seemed promising but did not help.  Over the past 5 1/2 years, my medical doctor and I have also addressed or ruled out a plethora of other avenues (biotoxin illness, Lyme disease, mercury and lead toxicity, nutritional deficiencies, dental factors, epigenetic expression, pain/structural complications, the endocannibinoid system with CBD oil, psychological issues, ruling out brain or cardiac anomalies, sleep issues, etc.).  But what about the dull ache in my tummy?

SIBO, small, intestinal, bacterial, overgrowth, abdominal, pain, tummy, stomach, appendicitis, clostridia, infection, test, OAT

I did an experiment with a hand held far infrared (FIR) device designed to treat pain.  I used to sell the KenkoWave when I was an Independent Wellness Consultant for a Japanese health technologies company called NIKKEN.  Pain in the right lower quadrant of my abdomen has persisted for over a year.  A comprehensive medical workup yielded no clues so I decided to shine the FIR light onto my tummy.  After just 2 minutes, I had a 2-hour, violent, non-stop convulsive episode that would not respond to any remedy we tried!  I hung on for dear life!  I experimented some more the next couple of days with the same result:  an hour of non-stop episodes after only 60 seconds!  Holy cow!  Maybe the cause is in there somewhere?  By this time I had gotten the results for the THIRD SIBO test coupled with an Organic Acids Test (from Genova Diagnostics and Great Plains Laboratories, respectively) with severe and high markers respectively.  Over the next month, a plan of attack came together.

Somehow treating SIBO last year with an antibiotic (that stays in the gut called Xifaxan) was not enough to solve the problem.  The current round began with about a week of a powerful bio-botanical followed by a nasty antibiotic called Flagyl or Metronidazole.  The drug makes me nauseous so I take another pill for that.  I am not fond of drugs but at this point I will do it if it KILLS THE BEAST!!!  Gratefully, the abdominal pain has already come down.  This leads me to the good news:

  • One-point reduction in the 1-10 pain scale.
  • Less reactivity to noxious stimuli and pain that used to trigger seizure attacks.
  • Shorter episodes that are generally less violent.
  • One less episode most days at my most vulnerable times:  falling asleep or waking up.
  • Clearer thinking for some part of more days.
  • Less stress, fear, sadness, and anxiety.
  • Fewer headaches.
  • Less food sensitivities slightly expanding my food choices.
  • Increased ability to tolerate more supplements prescribed by my doctors per my test results.
  • Ability to work in the garden about once per week.
  • Ability to get to bed before midnight up to 3 nights per week.  (I often stay up late to avoid seizure attacks falling asleep.  Sometimes this has helped in the past.)
  • Movement in a better direction on several laboratory test and scan results.

The changes also appear to have been impacted positively by taking Low Dose Naltrexone.  Persons with autoimmunity diseases and fibromyalgia often use it to reduce a variety of symptoms.  I did not do well on a different dose in the past but I believe the Lord led me to do some research and prompt me to try it again at a lower dose.  This started the list of improvements noted above with the reduction in chronic muscle and joint pain.  Praise the Lord!  Treating the gut infection followed and here we are.

I am encouraged and hope you are as well, Gentle Reader.  Lord willing, I am going to get well!

If you are someone reading this who is struggling with severe illness, please let me know so I may pray for you.  And please don’t give up!  If I can make it through hours per day of head-banging, you can make it through what you are dealing with too.  You are not alone.  Keep trusting in the Lord to see you through each moment, to guide you and comfort you as only He can do so.  He promises to never leave us or forsake us and will always be near if we but call upon our Lord and Savior, Jesus Christ.  He sees us on our bed of sickness.  He hears us.  And one day He will come again in glory for us, taking us to a place where there will be no more suffering or weeping.  He promised!

Thank you for following my journey dear one.  Take care, JJ

 

 

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

 

 

Hydration is Key

dehydrationHydration is key in health and down to the other

It makes everything better from one end to the other.

When I thought a drug might be my saving grace

I found that it was water that was my Lord’s gift of grace.

In 3 days and 2 nights 4,000 ml ran through my veins

In addition to many drugs in my tummy not my veins.

There was sparing of upsets from what I could not tolerate before

That number of drugs with Pepcid became my friend now like never b—–.

My Lord knew then showed my naturopathic Doc a few days later

That I would need to push fluids like never before for now and onto “later.”

So Smart Water and minerals in our Big Berkey will be my constant friend

When isolation of this Shingled hell keeps me from family and friends.

The Lord makes up the difference (as He always has) and grants me sleep

These last few days have been for rest and recovery and the deepest of sleep —

“To die, to sleep – to sleep, perchance to dream – ay, there’s the rub, for in this sleep of death what dreams may come…”

Hamlet does question if even death will bring dreams that will prevent peace when it comes.

But he is wrong for peace is granted here and now for those who believe no matter what may

For those who believe in the Lord who conquered death and knows the beginning from what may.

So once again, a thousand times I shall again proclaim

Alone in my Jesus I will drink the victory only He can proclaim!

************

If you are struggling this night, Gentle Reader, please hang in there.  Let me know your needs and I promise to pray as I lay your alms before our mighty Lord of Lords.  He cares for you, He cares for me.  And Lord willing, we are going to get well sometime between now and the day of His return.  Oh how I do hope you know Him this way?  JJ

A Christmas Gift

A Christmas Gift

Isaiah 9:2  New International Version (NIV)

The people walking in darkness
    have seen a great light;
on those living in the land of deep darkness
    a light has dawned.

Some of you know that I was in the hospital earlier this week with the searing pain of shingles on my face. I was crushed to face such a serious disease on top of the daily seizure episodes that accompany chronic Lyme disease: a battle that consumes me with treatment and related activities for most of every day. How could I possibly bear one more grief?

The answer:  with Jesus Christ. Inside the treatment plan of this new illness came a drug for nerve pain that also happens to help seizures. And fibromyalgia pain. I was humbled to have a couple of seizure-free days thereafter! Managing everything took strained breaths as I tried to get beyond the few 1-2 hours of sleep in those first days and other complications. There were setbacks that crushed my spirit: aggressive, violent episodes of a kind I had never seen before. Then they all nearly stopped. And very few “little zippies” have followed as sleep has returned too. I am humbled, hopeful, grateful. What a Christmas gift!

We have no idea what lies before me in this long journey of illness and hope for complete recovery. I am grateful for those who have followed my story, prayed, and offered encouragement just when I needed it. Thank you! I believe this story goes beyond me, however, as neither of us knows what lies ahead. But don’t waste your time worrying about that. Put your faith in the one who came to save us from this hell, these trials, the sorrows that plague our lives here on earth big or small that began as a consequence of the Fall of Mankind. He grieves for our loss, our struggle, our suffering. And He gives us a choice what to do with it.

Choose to join me in the celebration of a new life that comes from the belief and surrender to the Lord: Jesus Christ. One day He will return to make all things right. No more sorrow, no more tears. Until then we can have a good bit o’ the joy, the strength, the love that supernaturally exceeds this life: our eternal destiny begins the day we place our faith in Him. Do you now Him this way? He is the only way to peace. He is the only way to joy. He is the only way to love. He invented them after all.

Merry Christmas Gentle Reader. Hope to connect with you more in 2017 and most importantly at the celebration that awaits believers in Jesus Christ in heaven.

I love Christmas.

With love, Just Julie

snoopy-christmas