Tag: convulsions

A Plausible Case

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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

 

Treatment Update

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outnumbered

The concept of negative numbers to me is as mind-boggling as that of anti-matter.  If something can be measured on an integer scale then I suppose the values could go up just as easily as they could go down.  But when they go below zero, which is nothing, how can anything be less than nothing?

Perhaps the answer depends upon to what subject the scale is being applied.  Ha!  I would love for my personal scale of symptoms to be at zero.  I would love for the intangibles wreaking havoc in my life to be less than nothing as well.  But that is just not how it is.  This past Fall was very bad, indeed.

More days this past Fall than any other time since I got sick over 4 years ago, did I write “Sick Day” on my calendar as the activity that characterized the entire day.  That means that over 8 daytime hours were spent in bed due to an inability to perform any goal-directed activity:  about 3 days each week.  That stinks.  I had three trips to the emergency room when exasperated with noxious symptoms, more variety in the traumatic nature of seizure attack episodes, an increase in triggers of episodes (which were unclear more of the time), and less ability to perform my activities of daily living.  Steve had to physically care for me (from toileting to feeding) about four times each week.  This year was the first time that I was unable to complete both my Spring and Fall clean-up chores for our gardens.  An occasional meal out with Steve has ceased.  There even was a blow-up with my Doc in which he suggested I might work with someone else.  He admitted that he doesn’t know what to do.  Fine.  But who else would that be?

So here is my status:

  • Results of blood tests and stool tests are now pending to identify microbes that may be keeping me from getting well.  Flare of systemic Candida is one possibility.
  • Chronic Lyme disease is back on my radar as a possibility so for these first two items I have started to take an anti-microbial supplement every day.
  • Mercury burden is significantly reduced yet its role in ongoing illness is still unclear.
  • Dehydration is a daily battle regardless of how many fluids I ingest or receive via IV.
  • Continuous daily seizure attacks total 2 to 5 hours every weekday and often increase to 8 hours at least one day per week.
  • Social isolation continues to be a problem.  I am grateful for a weekly Skype Bible/prayer time with fellow bloggers and may add a telephone support group soon.
  • An extremely restricted diet (sugar/sweetener-free, dairy/mold/gluten-free, low oxalate/copper/meat) only becomes more restrictive as time goes on than more permissive.  There are often episodes after eating and I do not know why.
  • Physical therapy has generally helped to reduce neck and other pain yet the 30-minute convulsive episode at the end of nearly every visit is burdensome.  I bring my own sheets and graciously they avoid fragrances around me.  They are saints!
  • Generally I am only able to leave the house for medical appointments, grocery shopping, etc. twice per week, remaining homebound the other days.  Recent exceptions:  two wakes!
  • Physical exercises and activities, including my P.T. home exercise program, are rare due the likelihood of triggering episodes.
  • Travelling, even with our super clean travel trailer, increases sickness too much to bother for awhile.  Setting it up takes me 3 weeks and cleaning it afterwards takes 3 weeks as well!  Oy vey.

So now my pity party is over and I have nothing left to say.  I am praying constantly for the Lord to keep my heart from bitterness yet I fear that I am losing the battle.  Crying comes forcefully during the setbacks and I am concerned that it is more a manifestation of illness progressed to my brain than true grief.  My husband Steve carries the burden of all of this in his own way.  He is a saint and my hero.  Thankfully he has a great support network at church and work, his athletic activities, and lots of social outlets to keep him going.  Steve is an amazing man surely one after the Lord’s own heart.

I am hopeful that the anti-microbial treatment will help me; sometimes it even stops the episodes.  Yeah God.  However I am very stressed about the upcoming holidays.  Maybe there will be a “Christmas miracle” at our house too?  Lord willing, the numbers in my life will improve in a positive direction.  In the meantime I will be hanging tough.  It’s the best I can do.  JJ

senior numbers

When there are no words

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“Look up.  Look waaaaaay up,” were the words of The Friendly Giant in 1986.  This American children’s television host invited the viewer into his miniature living room where he pulled out a chair just for you by the fireplace.  Then an image of his fake leather boots appeared 10x the scale of the scene on the television as he invited little Sissy or young Bobby to follow the camera up to the smiling eyes waiting to tell a story, waiting to introduce you to a host of characters.  Rusty the Rooster was a silly-looking puppet yet their banter held my attention all the same.  Even though by 1986 I was not a kiddo anymore!

We often look up to see the wonder beyond us:  gazing at the twinkling stars so visible in the crisp Fall air or maybe oooing and ahhhing at the bright ornaments adorning the department store Christmas trees already on display before Thanksgiving.  There is something magical about a beautiful sight just beyond our gaze, just above our smaller human frame.  When that object is but ordinary the wonder may be less yet the opportunity to reflect may be just as profound too.

The ceiling above my bed of sickness holds much thought these days.  On a Monday I might see a simple popcorn ceiling in the same building contractor’s white paint of every home built that very year.  A few days later it may be the seam tape of the electrical lines painted to match the composite panel lining the roof of an aluminum travel trailer.  Two months ago it was a bright blue shade sail floating softly up, gently down above my patio chair when the weather was still sunny and warm.  Such simple forms that served to give me pause from the mayhem of the hours that dragged on before . . .

shade sail patio summer 2015

Times like these are best spent dwelling in the presence of the Lord.  No words fill my mind in those kind of moments.  The tears are already spent; the energy almost completely drained away.  Such is the aftermath of uncontrollable seizure attacks that plague my weakened frame day after night after day for hours without end.  The pattern continues despite new anti-microbial treatments, tests, consultations, prayer, tears, strategies new and old.  New pains come and find a way to stay.  There is nothing left to say.  There is nothing left to do but to dwell, I guess.

Even love can be like this I suppose when it hurts so bad and you still can’t seem to shake the pain away.  All you do is focus on the form that you knew or still know that stands in front of you when only a blank slate emptied of your future together remains.  Turn to the left, turn to the right, stand up, sit down, and unlike the cheer song at the football games in 1986, there is no fight!  Fight!  FIGHT!  when love goes away for good.  Oh how I long for the familiarity of the pains I had known long ago.  It would be so much easier to handle than the emptiness of my heart this night.  Yup.  The joy is gone!  Gone!  GONE!

So what’s a middle-aged gal to do in the middle of the night and there is nothing to look up to anymore?  When I have written more words from every angle that my heart can imagine and no new inspiration comes to fill the page, gosh, what will I do?  Not much, really.  Just wait I guess.  Tomorrow is a new day and it will be here before you know it.  Maybe something good will happen, eh?

In the meantime, won’t you hang in there with me?  Here, I have pulled up a chair for you too Gentle Reader.  The Friendly Giant is now known as Immanuel and has a special story to help us end this little time together.  It’s a great read for a bedtime story at any time of the day, I promise.

I do hope you enjoy it.  JJ

Psalm 121

Six Deer and a Skunk

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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

From the Do It Sick Chef: Let’s make something that resembles lunch!

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The first video of my Do It Sick Chef series is now available on Vimeo!

In “Let’s make something that resembles lunch,” I literally get out of bed to make real food in a real kitchen that includes:  a veggie-n-meat entrée, ghee butter, and roasted turnips.  Roasted turnips?  Yes, you got that right!  Special diets require new and sometimes unusual food choices.  Just Julie will show you not only how to make these dishes but how to prepare the food saving money, time and energy.

Future videos that are already in the works will cover the topics of freezing foods for easier meal planning, a stand-alone segment on ghee butter, kitchen organization to save energy, and more.  You are invited to “Like” my Hope Beyond Facebook page to keep up with future videos and share your meal planning, preparation, sanity tips too.

Take care, Gentle Reader.  Lord willing, those of us battling serious illness are going to get well!  JJ