Treatment Update and Anniversary

Six years ago tonight began a journey that has tested me in every way possible; brought me closer to my Lord and Savior, Jesus Christ, than ever before; deepened my love and gratitude for my beloved Steve; and helped me to grasp the incredible resilience of the human body/human spirit.  Thank you Lord for your sustaining grace through it all!

Rather than go into the details, I will simply refer you, Gentle Reader, to my story here.  Briefly, I got deathly sick with viral hepatitis after kayaking in a local reservoir and never fully recovered.  Seizure attack episodes began on a daily basis within a couple of months and have yet to resolve.  This serious illness has had many names, required extensive treatments at considerable expense, and rendered me unable to work in my profession of occupational therapy.  I miss working.  The social isolation, sense of loss, grief, and various disabilities have changed my daily life considerably.  Without my faith in Christ I would not have made it this far.  I do have hope for a better tomorrow which brings me to my quarterly treatment update as follows:

Recent lab tests found extremely high pesticide toxicity.  I immediately increased Far Infrared Sauna and various detox treatments until I could meet with my functional medicine Doctor.  Now after two intense weeks of exhausting research, medical appointments, and enough follow-up that would make the great T.V. detective Colombo proud, I am hoping that my Doctor’s office has processed a referral to a State Toxicology Center.  I found a neurologist that specializes in seizures related to toxicity and I want to see her as soon as possible!

In the meantime, I try to function as best as I can.  Sadly the very difficult titration of a new medication either keeps me up most nights or wakes me up with breakthrough tic attacks every two hours.  (I still spend most weekends in and out of bed with sickness.)  The focus now is to inhibit acetylcholine that we hypothesize is causing the seizures because of damage from organophosphate poisoning (OP).  Acute treatments for OP are well known but not for long term effects; we simply do not know how long I have had this toxicity.  The medication is an interim measure.  I am wondering if various Lyme, fungal, viral, and even parasitic infections have sequestered OP like these organisms can do with other toxic agents.  We know that detoxification can increase feelings of sickness called “herxing” (from release and recirculation of mycotoxins for example) when we either detox too fast or our liver or kidney pathways are blocked.  I now use bitter herbs with various binding agents in a “push-catch” protocol that helps to better tolerate the process.

organophosphate poisoning, round-up, pesticide, herbicide, toxicity, toxic, clonidine, seizures, treatment,acute

So here we go again with another new treatment direction!  At least this time I have concrete lab values to help explain what is going on along with a new, promising treatment direction.  In the meantime I’ll be hanging out as the “chick in the box” (as Steve says) at about 124 or more degrees, trying to literally “sweat it out” in our sauna. There will be no anniversary celebration per se for enduring six years of hell albeit with some sweet moments sprinkled in here and there.  There will be humility though as I try to be a godly steward of this journey my Lord has entrusted to my care.  I do have hope for a better tomorrow.  That is where this blog began 6 months into this 6-year journey and I hope that is where I will remain beyond that too.

Thank you for sharing the road with me Gentle Reader.  When I see my stats ticker go up a notch my spirit gets a little lighter, knowing you are there.  Thank you.

With love,  JJjer, 29:11, jeremiah, hope, future, plans, says the Lord, Christian

And there he was

Dr. David Jeremiah, life beyond amazing, tour, Fort Wayne, coliseum, event, Christian, Blackhawk Church, believer, inspiration

My husband, Steve, and I recently attended Dr. David Jeremiah’s A Life Beyond Amazing event in our town.  I enjoyed Dr. Jeremiah’s presentations:  first to get acquainted with his family life then his message on enduring life’s challenges as unto the Lord.  However I must say that the fundraising prayer by one of his staff was tacky!  The music was loud, motivating, and moving.  Overall I must say that it felt good to be worshiping and learning in the company of fellow believers in Jesus Christ again.

I really wanted to meet Dr. Jeremiah after the event.  No problemmo as just one of about 10,000 people in attendance, right?  Very carefully we made our way to show center from the nosebleed section of the Allen County War Memorial Coliseum.  My balance was a bit off from the sensory overload from many directions as I still battle Chronic Inflammatory Response Syndrome.  Nonetheless, I was a woman on a mission and soon found ourselves in front of the stage talking to the gifted musicians still lingering around.  I complimented Dr. Jeremiah’s granddaughter who sang in the worship team and asked where I might find her grandfather?  “He had to leave for a fundraising dinner,” was all she said.  I was disappointed but understood.  Fort Wayne, Indiana was the starting place for Dr. Jeremiah’s ministry and many members of the church he had founded here were in attendance; surely there were special activities going on to which Steve and I were not invited!

We tried to find some restrooms that were not swamped by the crowds still leaving the arena.  Having been there for shows many times before, when we headed down an open hallway where some smaller meeting rooms were located.  We encountered the vocalists again and saw a meeting room bustling with people just before we found our destination.  The hallways were virtually empty except for a few late-comers headed to what looked like a reception.  Then just before I turned to go into the lady’s room, I saw him!  Dr. Jeremiah was walking with his wife headed for that same room and it was becoming clear that we had just passed the room where his post-event activities were to take place.

This was my moment and I stepped up to it.  I walked up to Dr. David Jeremiah with my arm outstretched to shake his hand.  He accepted it and looked into my eyes briefly as I said what I had rehearsed in my mind ever since I had expressed a desire to go to the event days beforehand.  It went something like this:

Hi.  My name is Julie ____.  Several years ago you gave a message that included the teaching that God’s man in the middle of God’s will, will not perish until the Lord God ordains it.  I wanted to tell you how much that message has meant to me as I have battled a serious illness with seizures every day for the past 5 years.  Thank you.  Keep doing what you are doing!

His spoke words that followed mine as I finished the sentence from his audio tape, as if he had just given the message yesterday and not over 10 years ago!  He thanked me and quickly continued to his destination with his wife.  I continued to my own destination with a sense of wonder and amazement.  That moment was ordained by God for sure, just for me, just for him.

My spirit was calm and full as I thought about all that had transpired over the past 2 1/2 hours.  Steve and I drove home lightly chatting along the way, mostly quietly in our own thoughts.  I would be very sick with convulsive episodes within the hour of returning home and showering.  My senses were completely overloaded from the loud music, close proximity to other people, and the effects of some new treatment ramping up.  For the first time I did not feel traumatized by the serious illness that I have been selected to endure.  My own words provided the comfort I needed to get through the darkness of the night.

God’s woman, in the middle of God’s will, will not perish until the Lord God ordains it.  He has a plan and purpose for our lives even in the midst of suffering.  And should I finish well, the tasks before me no matter how difficult, there may be reward someday but first there certainly will be a closeness to my Lord and Savior Jesus Christ, that transcends my understanding.  I want that.  And touch points in life like these will help me to craft my own life beyond amazing.

I’m up for that.

JJ

 

Smaller Moments Mean More

When the mist on the pond lifts up to the air

The morning hath come and I give witness to life once again.

For I am up through the night, my old haunts hath returned

A way of coping, of living:  just what I gotta do for right now.

So I edit a magazine, make charts of treatments, plan for when I will be well,

Most folks would not notice the shifts ever so small

The wretched episodes continue albeit with shaking, less overall.

I had to gain courage to take more meds/more remedies than ever before

Go rogue to kill the monsters within with faith and every tool from this road.

“Parasites in the brain” sounds pretty scary might you agree?

Yet that is exactly where I have arrived so be that as it may

Find me spacey perchance to dream when restorative sleep comes that way.

The smaller treats of life mean more to me now in my softened state

I get to see them in slow motion and savior their texture, their smell even when awful like glue.

What is before me fills every moment in much more detail

Healing comes small before big so intentionally I walk through most of the day.

Don’t get me wrong, the chores fill more hours than they used to years ago

That ‘s just one part of the plan so is rest and in times of rest I believe answers we have found.

Wyoming, clouds, blog, metaphor, analogy, Chistian, faith, majesty, creation, God, sky, big

One does feel ever so small next to God’s majesty revealed in the big sky over Wyoming . . .

Being married to me

Must be tough being married to me

A kiss can turn into a nightmare, intimacy much worse

When the beast of illness rears its ugly head

And convulsive episodes ensue and last and last . . .

You never really know when

Some sweetness will turn to black

Your affections will turn to caretaking

Yielding another failed remedy instead of a back rub . . .

No partner by your side

Others asking about the phantom wife

Does she really exist out there somewhere

Or is it just on paper and within her cage of the home?

She cooks alright and keeps the house afloat

But complains every time you call

Of this dire affliction or that when he’s at work

Helpless, other-directed, and burdened under the strain . . .

Months turned into years

As life tried to move on so we

Try to celebrate this or that, have a nice meal

Only to have her collapse at the kitchen table again . . .

He has gotten stronger

From carrying her burdened frame

To the toilet, the bed, the couch, off the floor

Rolling her over in bed, lifting her up to drink . . .

He has had to adjust to this abnormalcy of life

Never mentioning it unless another asks

For the pain of the story isn’t worth the awkward moment

A thousand times told, untold a bit later . . .

Tis the Lord’s will

The believer in Christ must contend

Yet are we not commanded to fight

For good, for answers, for more faith when tears flow?

Altogether lovely

He remains strong

Goes to work and play

To cope with the madness . . .

She waits at home

What choice does she have?

Her calling different from his

Or is it when bound by love?

There is no right way

To navigate a life gone off the rails

Except to breathe daily in prayer

When being married to me.  JJ

Where to go from here?

More testing, more phone calls

Why did I ask for preliminary results?

Wouldn’t you knowing my next appointment was so far away?

Two hours of seizing.  Every day now.  Of course I asked!

Sigh.

Full report due next week.

The findings of acute toxoplasmosis will be clarified.

Will PCR or the summary mean more antibiotics

To challenge my innards, still reeling from IVs last year?

I cried when I should have been glad

To know there was something there after all —

The test will cost over a grand

And we have no idea what insurance will do.

So for now I wait.

The specialty lab is delivering on time

Hoping the Lab Director talks to my Doc

And none too soon . . .

Hold me Jesus.