Known in the Gates: Part 2, The Inside Story

One of the movies that has really resonated deeply with me is, The Breakfast Club.  Please see my previous post for the catchy theme song that underscored the film and one of the most poignant scenes that is also pertinent to Part 2 of this 3-part blog.

In Part 1, I described the isolation that I have felt when enduring a serious illness and how the Lord still gets me through the toughest of days.  His Word is my greatest comfort; the leading of the Holy Spirit and His presence are my greatest companions.  I ended with a question,

But how well does he really know me?

Sure, my Lord crafted me before I was born and set forth all that I would be, all that I would endure and accomplish.  His Words in Psalm 139 declare that He knows my “innermost being.” Does this include the longing of my heart as well?  If it does, why has He allowed me to become so dreadfully isolated?

Maybe someday I will get to see why so many family and friends have chosen to “walk on by” me as it says in the theme song of The Breakfast Club.  Have I not been a good friend?  Maybe I was not.  I remember about two years into this ordeal someone contacted me and asked me about getting together for coffee.  I replied “yes” and then I never heard from her again.  My spirits had soared then crashed and burned.  For believers in Jesus Christ, the answer to the “why” question is usually left for eternity.  We simply may never know “why” this side of heaven.

Those of you not living in isolation may not have any idea how much Satan uses this experience to tear a person down.  He can prey upon all of our negative emotions and be allowed to create havoc in our lives.  (Yes, ultimately God is still in charge!)  Yet I know that it’s really not about resisting Satan or about losing the people in my life.  I resist the devil and his demons with the sword of the spirit:  the Word of God as described in Ephesians 6:10-17.  People come and go in our lives and that is the normal ebb and flow of life.  It really is about my response to the taunting, the loss of these relationships.

My challenge has been particularly great due to the effect that this chronic illness has had on my brain.  Responding to Satan’s lies and the loss of relationships has been affected by the change in brain chemistry that came with chronic illness.  My ability claim victory in the name of Jesus Christ and fully embody the companionship of my Lord have been affected.  Satan’s lies have been magnified.  My social skills have eroded.  My ability to think clearly has been altered.  And I struggled to override these skill deficits but could not, even if I tried.  Allow me to explain.

Only recently did we discover that excessive neurotransmitters called catecholamines (epinephrine, norephinephrine, and dopamine) are likely contributing to my mood changes, thinking and communication skills in addition to possibly causing the convulsive episodes.  This is happening due to the expression or “turning on” of polymorphisms (SNPs) or breaks in several enzymes that help form my DNA code.  The DNA code is the instruction manual or blueprint from which the body functions.  Everyone has a unique combination of broken SNPs that get turned on by illness or significant stressors in the environment (such as exposure to mold).  For me the factors included everything that I have written about in this blog:  biotoxin illness/hepatitis, latent Lyme disease, Candida toxicity, mold illness, infected root-canaled teeth, and mercury toxicity.  That’s a lot of stressors!  These illness and environmental challenges became a trigger for disaster.  I even have the data to prove it, all of it!

methylation cycle, Dr. Amy Yasko, SNPs, Lyme disease, mold illness, mitochondrial, mito disease, methylation, B6 deficiency, CIRS, mold illness,
One version of a methylation cycle from http://ihateticks.me/2014/10/06/methylation-for-dummies/

For some people this process manifests as a Mitochondrial Disease or a disruption in the methylation cycle inside the nucleus of the cells of our bodies.  My thought life was affected.  My mood was affected too.  I had waking and nightly nightmares not based in any reality past or present.  Those were internal things that my beloved husband, Steve, and the healthcare community could not see very often.  Several healthcare practitioners labeled me as having a mental illness of sorts, often without even completing a mental status exam or workup!  Gratefully, Steve believed me.  They all saw the wretched convulsive episodes that have plagued me for hours every day for 3 1/2 years.  And Satan was allowed to enter into the whole dynamic with lies and attacks that I will definitely write about at another time.  Absolute mental and physical wretchedness.

But now the gig is up!  Two days ago I woke up from a lovely nap after starting to treat this condition.  I had my first 16 hours seizure-free!  It’s as if someone turned on the lights in my brain!  Not only do I have a formula for correcting the brain-part of the process but the prayers of deliverance against the spiritual warfare are taking hold.  The cascade of negative mental, physical, social, emotional, and spiritual suffering is beginning to turn around. Lord willing, I am going to get well!

My Jesus knows all about every aspect of what I have described here.  He also knows the desires of my heart.  How do I know this?  My prayers long before this illness began was to become whole.  I had been broken by the consequences of a hard life:  events out of my control.  Many times during trauma the Holy Spirit would bring encouraging scripture to me that kept me moving forward.  Yeah, finding hope and finding myself has come through horrible, ongoing isolation and trauma.  I have worked hard to recover from so much suffering in my heart, my mind, my body.  Each step of the way has been both painful and meaningful.  Yet I tell you, Gentle Reader that nothing has been wasted!  I have learned to trust the process in EVERY CIRCUMSTANCE under the protection of my Lord and Savior, Jesus Christ.  And now the desires of my heart are being realized.  Cool beans.

So how does one rebirth the desires of one’s heart?

Jer 29.11b

To be continued in Part 3 . . .

The moments that matter

child with umbrella, boy, boy in the rain, blog about sorrow, overcoming sorrow, rainy day, hope beyoneWhen things are not right or even worse

We cry out to the air and wonder, “who is there?”

“Can anyone hear me on my bed of sorrow?”

“How long will this go on, how long?”

Oh the angst for enduring what simply should not be . . .

I could bemoan much pain in my heart this day:

From my spirit through my tender frame.

But why?  What will I gain by wallowing here?

As I listen to a friend who sounds like me over the waves,

I hear wisdom that comes with her years.

She doth declare that in her own time of prayer

The Lord spoke to her so gently.

In all of those times of suffering,

When surely no one cared He said,

“I was there with you.”

And her heart was full, no place untouched.

So today let’s heed this wisdom

Should we, too seek and hear His voice.

Don’t just want for the pain to end.

Reach into the moment to His love so grand.

Find people with mercy for the darkness of our lives

For we all have a burden to carry, each one.

And let us come together in prayer, in fellowship, in praise.

But most importantly

Kneel at the throne of grace often

In adoration of the Person who sees you always.

For Jesus loves you always.

And turn these into moments that matter for all time.

They will be sweet, and soften the burdens we will endure.

We can go on when held by His hand.

Yes, we can indeed.

JJ

Get this book!

Gentle Readers:

If you are dealing with chronic or unexplained illness, I encourage you to get this new book by Suzanne Sommers:

Tox-Sick

Mrs. Sommers uses her interviewing style to cover topics that are usually more difficult to understand when it comes to the complexities of serious illness.  She includes a broad range of diseases, treatments, and types of practitioners, only occasionally mentioning her other best-selling books!  I especially appreciate the index for locating topics of interest.

This book might have shortened my learning curve if it had been available 3 years ago.  May it shorten yours!

Take care,  JJ

Missing you terribly

There’s a Barbara Streisand song with lyrics that go something like this:

If we had the chance to do it all over again, tell me would we . . .

Could we . . .

The way we were.

It’s not that I would like to go back to my former self or anything like that.  I have had chronic pain for most of my life and lived with pain inside my heart for longer than that.  Many of my own mistakes were downright damaging.  Still other experiences damaged me and it would take until very recently to be free of their dark spiritual underpinnings.  The freedom I experience in today from the drama of yesterday’s trauma was worth the good and bad spent getting here.  But there is one part I am not sure what to do with . . .

I was never really physically fit and virtually always held a critical eye toward my physique even when at my ideal body weight.  All that did not seem to matter to the stream of the male persuasion that came my way, ever since I was twenty years old.  (Not sure what they were waiting for before that!)  I always rode my bike as a kid EVERYWHERE.  I did not think of it as exercise at the time, just a means to get me to the home of a friend.  Several times in college I tried running around the sidewalks of the sprawling campus.  “Library Hill” was a killer!  Maybe I should say that I ran on most paths except the 27 or so degree incline of Library Hill!  Carrying a full load of books up and downhill to class or to study late into the evening at the library should have earned me an extra degree in something or another!

What I miss most is the innocence of moving without thinking about it.  Every day lately brings stark reminders of the convulsions that have returned.  Every day brings a new version of shaking that hurts my neck the most and leaves some version of a headache behind.  Every day the hope of exercising for the enjoyment of it alludes me only because I cannot; I actually had grown to like high intensity workouts before I got sick 3 1/2 years ago.  Even with chronic pain I worked out with weights, unloaded my truck bed filled with sod/dirt/mulch, and kayaked for a couple of hours each week.  I loved being strong.

Today I miss being strong.  The trauma of seizures and convulsions have taken their toll.  The sickness after an episode usually lingers for hours, days.  I never really know for sure when the next episode is coming although the bedtime and waking-up patterns have been fairly consistent throughout this ordeal.  Somehow despite my weakness, I HAVE NOT GIVEN UP for more than a day.  Yesterday Steve and I went for a walk with our pup, Elle though most of the time the walking is through the halls of our home or a medical facility . . . or this past Saturday’s date night to the grocery store.  It’s something, eh?

O.K. so I am bummed out.  I have missed writing and did not blog so as not to bum you out, Gentle Reader, in reporting that the surgery did not stop the episodes as I had hoped.  There are tiny improvements and for these I am grateful.  I think I’ll need a little longer to recover and clear the anesthesia completely out of my system.  In desperation I went on a water fast for 24-hours last week.  It was awful!  Amazingly I did not have seizures until the 24th hour!  I believe the Lord gave me the wisdom through it all to start a ketogenic diet so new research and a new direction began the next day.

A ketogenic diet is a high fat diet where the fat becomes fuel for the body instead of carbohydrates.  The version for seizure control (generally used for children) is unlike the keto diet for weight loss in that fats are consumed more than protein “macros.”  Grams of carbs are the tiniest portion of the three. The increase in ketones are measured in either the urine or blood and thought to be the mechanism that brings some level of seizure control in 25-50 percent of children.  In children the diet begins after a 24-48 hour fast in a hospital.  Hmmm.  My great Physician led me here after my own fasting experience too.  So with the MyFitnessPal nutrition app in-hand, I am moving towards the ideal ratios of fats, proteins, and carbohydrates.  Good news:  that means lots of bacon!  And at least I am off the pureed diet now!

The way we were.  Can it be that it was all so simple then?  Or has time re-written every line?  If we had the chance to do it all over again, tell me, would we?  Could we?

Perhaps the real longing requires me to not look back at all.  Then what is it Lord?  Fill this emptiness, please.  Ease this hurting.  Thank you for new tracks to run on, so to speak.  I still need you desperately to guide me.  I realize that I may not be alone in this desire you know.  Please comfort the Gentle Readers out there who need you too.  JJ

EMU Halle Library with another runner testing his strength!
EMU Halle Library with another runner testing his strength!

 

The Extended Forcast is Good!

Cast your burden on the Lord, and He shall sustain you; He shall never permit the righteous to be moved.  Psalm 55:22

But I want you to know, brethren, that the things which happened to me have actually turned out for the furtherance of the gospel.  Philippians 1:12

I am 2 days post surgical removal of 2 root-canaled teeth and THE CONVULSIONS ARE GONE!!!  Yipppeeee and praise the Lord!  This 3 years of daily hell for me and my beloved husband, Steve, is finally over!

While there is still much work to do to detox mercury toxicity and re-evaluate chronic Lyme and mold illnesses, I feel more optimistic that I will be able to tolerate those treatments someday.  Until this week, I was failing.  I was bedridden most every day with convulsive episodes.  The grief and impact was huge on everything from our finances to my aching neck.  My husband no longer got a full night of sleep and this illness had changed virtually every activity inside/outside of our home.  How would Steve find me when he came home from work?  Would he have to make me my pureed dinner and feed me again before bed tonight?  Carry me to the toilet?  Our hearts were weary after 3 years of this living hell.

Nine months ago I began investigating how two sore molars in the upper left section of my jaw might be impacting my health.  Four dentists and three oral surgeons, a cone beam CT, MRI, and pano plus regular x-rays later (including a consultation out of State) we had no objective data to guide us.  Everything looked “fine.”  The teeth had bothered me for over 13 years!  Fifteen years ago I had all my amalgam fillings removed but was never guided to chelate for mercury.  Were there silver filings containing mercury remaining underneath the crowns over these two teeth?  We will never know the answer to that question.  My saliva had started tasting metallic.  Eating started triggering the convulsive episodes.  With Steve’s support, we took an expensive leap of faith and pursued a dental solution.

Additionally, seven weeks before what would become the big day, I started eating only on the right side of my mouth.  Two and one-half weeks later I started a pureed diet to eliminate the chewing action that seemed to make things worse; all this was quite a feat since my struggle to get well led me to eat low oxalate, virtually dairy-free, and completely sugar/sweetener-free, gluten-free, and mold -free foods too!  Another two weeks later and 1 week before the surgery I noticed that using plastic utensils delayed the onset of convulsions after eating.  Even drinking my foods through a straw helped initially then ultimately triggered episodes.  I feared eating anything at all!  The only problem with that was hunger and thirst could also trigger convulsions or make them worse.  I felt trapped!

Three and one-half days before the dental surgery my doctor recommended trying an EMF deflecting device.  “It might help” he said, like so many other recommendations I had received all over the spectrum of traditional and alternative medical care.  After one such technology (a Rife machine called a Beam Ray) I tried 3 years ago to treat “Chronic Lyme,” the daily tic attacks started.  Within a year these episodes would escalate to waking seizure attacks then convulsive episodes lasting 2 to 5 hours per day.  We had tried to shield me from wireless technology in our home in the past yet the results were initially helpful then inconsistent.  This time the GEOMACK from Spain reduced the intensity of the convulsions 50%.  That reduction gave me a tiny boost of strength that I needed to physically and mentally prepare for surgery.  My husband got some much needed sleep as well!  Could their be an electrical cause after all?  (See this blog for more anatomy and discussion.)

The morning of the surgery went as usual.  Convulsive episodes began shortly after opening my eyes and periodically as we prepared to leave the house.  Seizure zips ripped through my hungry and thirsty frame as my beloved drove us to the hospital.  We were still reeling from the large check we had to carry with us since the oral surgeon insisted on performing the extractions near a crash cart, I guess.  And after some prayers, many silly jokes and one last shake/rattle/and roll with placement of the IV in my arm, the time had come to let go and not look back.  We reviewed my situation with the anesthesiologist and oral surgeon, surgical tech, and several nurses.  They were not to abort the mission if I seized under anesthesia!  Just wait a moment and get the job done.

I’d like to say that I woke up in a calm, blissful state but that simply was not the case.  I became nauseous and pain management was a problem over the next day and one-half.  Oh well.  One thing was certain:  THERE WERE NO SEIZURES OR CONVULSIONS!   The “battery effect” of dissimilar metals in 2 adjacent crowns over root-canaled teeth WERE FRICKIN’ GONE!  No more tazoring of my brain would continue.  And hey, if there was hidden infection in the root-canaled teeth then the problems caused therein are now also “history.”  The hell is over.

My job now includes retraining my brain to relax when falling asleep instead of bracing for impact.  My job now includes remembering all of the relaxation techniques I used to train my patients in psychiatric hospitals to deal with anxiety.  I need to rework those memory pathways and feelings of impending doom that followed me, waited for me every night, every morning, every time when I was exposed to noxious stimuli, or even on the clothing or breath of my beloved anytime, anywhere.  Hey, no problemmo.  I am ready to live and the extended forecast is good!

Thank you and big hugs to those of you who have followed my story for any length of time,  You have been an important part of my lifeblood to go on when I could not.  Sometimes my husband could not be home with me and I was alone, feeling terrified mostly of even greater suffering and it came.  The worst episodes were never captured on YouTube videos because my warrior husband was needed to hold me tightly to keep me from greater harm instead of holding onto a camera.  Sometimes the Lord was silent even when I cried out to Him when breathless, facing death again and again when my breathing stopped.  When He did speak I gained the courage I needed to face the next trial.  In the end, death was not my greatest fear.  Dying without my Heavenly Husband was.

But you know what?  I made it through.  Steve made it through.  A new chapter in our lives is about to begin.  I’m going to take some time now and regroup.  I am very weak.  An infusion of my Jesus is needed.  The warmest embrace with my beloved must follow.  And really good food cannot be far behind.  After tomorrow the putty d’ jour will be history!  Yeah God!

Pureed Tri-Color Carrots, Cauliflower, Bacon, Ground Round, Potato Chips, Homemade Broth, and Sea Salt
Pureed Organic Tri-Color Carrots & Cauliflower, Bacon, Organic Beef & Potato Chips, Homemade Broth, and Sea Salt in the Recovery Room!

With love, JJ

But the Lord was my support. He also brought me out into a broad place; He delivered me because He delighted in me.  Psalm 18:18b-19

Cast your burden on the Lord and He shall sustain you; He shall never permit the righteous to be moved.  Psalm 55:22

UPDATE:  The holiday from convulsive episodes did not last, unfortunately.  There were many benefits from having these two infected teeth removed:  significantly less mouth pain, less congestion in the upper shoulder and neck, decreased TMJ symptoms, decreased auditory anomalies, reduced ringing in my ears, and more.  Then there was a miracle:  our insurance company covered most of the $10,000 bill.  Amazing!  :J