A Plausible Case

As you may have read in the About Julie page of this blogsite, I treated for Chronic Lyme Disease early in the four years that I have been battling serious illness.  I had not recovered my health four months after a bout with viral hepatitis and our Family Practice Physician convinced me and Steve that latent Lyme disease was keeping me sick.  Then the story changed a few times . . .

Treatment for Lyme disease, Candida, mold exposure, mercury toxicity, gut parasites, and infected root-canaled teeth has still left me with the following symptoms four years later:

  • Hours of daily convulsive episodes, every single day
  • Headaches
  • Painful shoulders, forearms, hips, neck, jaw, and more
  • Ringing in my ears
  • Multiple severe chemical, mold, and sound/light sensitivities
  • Significant nutritional and hormonal deficiencies
  • Fatigue
  • Episodic cognitive and emotional setbacks
  • Periodic night terrors, nightmares, waking terrors
  • Weakness and deconditioning
  • Air hunger and chest compression symptoms
  • Neuropathies
  • Severely disrupted sleep/wake cycle
  • Food sensitivities despite a restricted diet
  • Gut dysbiosis
  • Inability to consistently perform activities of daily living or work
  • Social isolation
  • Intolerance to treatment

So in other words, my life is kinda hellish a lot of the time!  Today was no exception.  Then right in the middle of the trauma there were tender encounters with the sweetest man on the face of the earth:  my Stevers.  We talked in between seizure attack episodes, he provided care when I could not move, and we made the most of a low-key day.  It was the “same story, different day” around here.  And something else happened too:  I may have discovered another piece of this wretched illness mystery:  Latent Lyme Disease can affect the gut which in turn can contribute to neurological complications much like the ones that have eluded all of our attempts at recovery.

No, it’s not systemic Candida as I suspected when I wrote my last Treatment Update.  It’s called “Bell’s Palsy of the Gut,” a term coined by Lyme Literate Medical Doctor (LLMD) Virginia T. Sherr.  “Gastrointestinal Lyme disease may cause gut paralysis and a wide range of diverse GI symptoms with the underlying etiology likewise missed by physicians,” states Dr. Sherr in the April 2006 issue of Practical Gastroenterology (p. 74).  There are tests that can be performed to determine the presence of Borrelia burgdorferi along with other microbial pathogens  transferred in tick saliva after a bite.  In two weeks I will have a diagnostic procedure in which these tests could also be performed.  Whoa Lord.  Is that why I felt led to add an anti-microbial to my anemic treatment plan?

God is good.  All the time.  God is good.  Today I felt led to add back a probiotic that I actually was able to tolerate this time.  The new information about Lyme disease may explain the increasing gut inflammation this past year and my supremely negative response to a trial of a far-infrared light treatment to my abdomen.  Or to any abdominal exam.  Or to physical therapy to the hip flexors in the lower part of the abdominal wall.  Or to certain foods.  At any rate, a new door has opened and there are new possibilities for getting well.  Perhaps it is time to re-visit the diagnosis of Lyme disease.

Stay tuned.  This exquisitely wild roller coaster ride of recovery from serious illness is about to reach a new station.  In the meantime, please pass a spoon and 1/2 of a carton of Siggis plain, grass-fed, organic and Icelandic yogurt.  We’re going to get this thing right or keep screaming all the way to the bottom of the next hill until we do!  (I told you that I worked in an amusement park one summer didn’t I?  Yeah, Cedar Point is really cool!)

Cedar Point gatekeeper_wallpaper

 

True Love, He Says

1 Cor 13, 1 Corinthians 13, true love, love, husband, Christian, marriage, crisis, enduring, strengthening, wife, chronic illness, love through trials,

Looking into his eyes in the dim light this eve

Knowing how he carried me through the hour gone before,

I had to wince in disbelief then fall more deeply into the blue

He demonstrated his heart once again with eyes that shone on me once more.

How did I ever earn the affections of a heart so pure?

I wondered then left him sleeping, hoping to wind out what was left

As my evening had more hours to go, my To Do list already trashed

No matter the weakness of my days to discover that this part of living is best.

My love understands what it really means to care

When to be strong, to lie within reach, to call just to say, “hi;”

He slays the dragons out there by land and by sea

Then rescues this damsel as needed (no matter how many times)!

To say that I am grateful

Would be too tiny when I am humbled more than that:

A real man has chosen to love me forever

May the Lord bless us both for the journey:  true love magnificat.  JJ

Six Deer and a Skunk

We were heading south along a remote section of a newly created road when six deer, one by one, carefully stepped across the road in front of my truck.  My husband was driving and proclaimed that he was glad that he saw them just in time to slow down!  My proclamation was the awe of the gentle animals crossing our path on a night when the witness of God’s creation in the dark was the last thing from my mind . . .

Yes, we were on the way to the Emergency Room again.  After the third night in a row where convulsive episodes escalated with the setting of the sun coupled with unusual right, lower abdominal pain, we decided that our threshold had been reached.  The decision to drive off to the ER is never and easy one.  Am I really that bad?  If I am not dying should I just wait and see a little longer?  Now that our sixth trip in four years has come and gone we both agree that having an evaluation in the middle of the night is no worse than the alternative.  This trip was unusually unpleasant, however.

We waited almost 2 hours before being escorted back to exam room 22.  During that time we witnessed the collapse of a young woman in a wheelchair whose urine bag tube dangled over the edge of the leg rest and two family members looked on with worry.  We prayed for them.  Moments later one of the several children in the expansive waiting area spontaneously vomited all over her mother and the floor (about 15 feet away from us).  The mother and a nurse-type staff person whipped into action including spraying everything with a sure-to-be-aromatic cleaner.  In my heart I prayed and in the moment we moved to another section of the ER as I donned my mask so as to avoid the fumes and vomitus aerosols from further exacerbating the convulsive episodes.  In the distant section in which we landed was a double-wide chair that made a makeshift bed for my own weakened frame.  We later discovered that by the end of our tenure at the hospital there would be EIGHTEEN car accident victims that would filter through the emergency department that night.  Lord have mercy!

My own challenge was significant yet still I was filled with gratitude that it was not as bad as those around me.  Much later and somewhere after the halfway mark of the IV infusion of sodium chloride, the convulsive episodes subsided.  Yeah God!  Then came the abdominal CT scan and pelvic ultrasounds.  Each were laden with their own versions of torture just for me.  I guess I’m just “sensitive,” right?  (If I hear that phrase one more time I’m going to scream!)  No matter, the noxious symptoms accompanying these tests mixed with tears and additional pain were bonuses upon which I had not planned that night.  For example, I had planned ahead and brought my warmest fleece jacket for covering up in between procedures.  It just wasn’t enough to counter the cold life-size tongue depressor gurney of the refrigerated CT scanner!  Another episode added to the collection.  And for me, pelvic ultrasounds are very painful.  I was there for abdominal pain, right?  Oh yeah.  “Just breathe deeply honey.  You’re doing great . . . ”

Sometime later the nurse assigned to me returned.  She had already navigated through the comfort and pain medication options that I could tolerate then brought the latter in the wrong form for a person whose stomach was empty.  I declined.  Pain management Plan B never arrived.  Later I was sobbing after the ultrasound (US).  The US technician activated my call light requiring me to ask for my own pain medication to which a nursing assistant responded.  Someone beyond the closed glass doors and pulled curtain decided that a relaxant for the gut would be a good choice for me.  Perhaps that was indicated?  But the nurse appeared with an 8-inch long syringe including a 4-inch needle that was bigger than those I had become acquainted in my lifetime!  I thought surely she would administer it into the IV line.  Nope.  She started to pull up the sleeve of my hospital gown.  With horror I wondered how so many cc’s of fluid from that big of a needle would ever penetrate my deconditioned arms.  “It has to be given intramuscularly,” she instructed.  “How about my hip?” I replied.  And as I turned to reveal the warmth of my skin buried beneath 2 blankets and a flimsy gown I began to freak out.

“No.”  “I don’t think the pain is bad enough to endure the pain of an injection like this,” was all I could blurt out.  She said “fine” and some trained nursing replies as she discarded the second drug that I wondered if or not would be added to our massive bill that night.  She left the room.  And then I began to cry and cry and cry.  I just couldn’t take the whole ordeal anymore.  I wept some more.

Within the hour we were making our way to the all-night cafeteria in that large Regional Medical Center.  My beloved, Steve, and I scarfed down more food than we had in a long time!  French fries are a great comfort food at 2:30 in the morning!  The salads were reasonable too.  At last my brain and personhood began to revive.

Steve drove us home into the dark and near-drizzly night.  Perhaps he was a bit cautious as we went, knowing the numerous auto accident victims that were our unseen neighbors in their own suites at the hospital.  “How bad were they injured?”  I wondered.  Oh my Lord, please comfort them too.  My mind drifted to the half-dozen deer that welcomed us before the bright red lights of the “EMERGENCY” entrance had illuminated our path 4 1/2 hours earlier.  I felt so much peace when I had seen them.  It was like the Lord was showing me that things were going to be alright.  Then again, their crossing was followed by the stench of a skunk!  What on earth could that mean?  Who knows?

Maybe the deer were “skunked” before they crossed the road.  Hunting season has begun dontcha know?  Maybe Steve and I we were somehow skunked too.  We made our best decision and ventured out to the hospital instead of what most couples do on a Saturday night.  And through it all, my beloved Steve was a champ the entire time.  He always is, dontcha know?

Some of you know that in about a month the number of years that I have been sick will exceed the number of years that I have been well during my marriage to Steve.  When presented with this observation Steve never flinches and repeats his vow of promise to love me forever on either side of the road of life.  Sigh.

headstone, marriage vows, til death do us part, cemetary, his and hers, cemetary plots, funeral, graveside service, Christian marriage
Til death do us part . . .

Oh my Stevers.  YOU my love are such a precious dear!  JJ

The Bear Who Loved Me

On second thought, if I wrote this blog and you read it then I would have to kill you (to save my marital discretionaries!).  Just kidding!  Next blog!  ;J

Car guys young and old

oldcarguysI don’t care how old you get

Or what you end up tinkering with

As long as you save the best for last

And that is me, I do believe I will be happy!

Happy new year and many blessings to my beloved Steve.  Your love, devotion, selfless acts of service, and witness for Jesus Christ deserve a post all of your own.  I am so very grateful to the Lord for the privilege of being married to you!  Rock on my dear.  Shall we put together another year of adventure?

I love you truly, Just Julie