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 . . .

If the story made a difference

A blog is an interesting vehicle in one’s life.  You get to write about anything you want and just about anyone, anywhere can read it.  At least that is how this blog is structured.  Funny thing is that once you get going on a particular topic, there’s a high likelihood that you might reveal a little more about yourself than you might if you were in person.  The ideas just flow when here alone at the keyboard and if it is a personal blog (instead of a professional or business forum) well things can get personal quite easily!  If you are honest, that is!

Why bring this up?  Well I have come to realize that some tragic events in my childhood are influencing the nature of my recovery from illness.  The question I have grappled with of late is whether or not to write about it.  Oh the story is juicy enough to draw some interest and you bet I’ll let you know how the Lord has helped me endure and overcome the pain of it all.  Healing has come for these hurts because of the love of my Heavenly Father manifest in my personal relationship with His Son, Jesus Christ.  The Holy Spirit has guided the process:  providing counsel, “Jesus with skin on” in the form of loving sojourners, helpful tools, and His glorious written Word leading me to hope.  So why share the hairy details anyways?

Possibly I would because horrific illness may trigger past hurts for others more than me.  I don’t want you to feel alone if that is part of your story.  New trauma often stirs up old wounds:  at least the one we might find are not fully healed.  We might not know that they are not fully healed until something new happens in our lives as in the course of serious illness.  I view many of these events as “another involuntary growth experience” and am often left feeling more whole when I work through the tender issues correctly.  The problem is that when you happen to mention to a medical professional that waking nightmares, seizures, involuntary screaming episodes, and convulsions have triggered scenes that might be from your past YOU GET A PSYCHIATRIC LABEL AND THEY STOP TRYING TO TREAT THE MEDICAL ILLNESS.  This is frustrating indeed!  The medical illness came first.  Healing secondary issues is a bonus, like clearing out cobwebs in a musty garage.  Cool beans and all that jazz.  Keep the treatment focus on the root cause people!

So for me to share old or emerging facts from my abusive past runs the risk of my physical symptoms not being taken seriously.  Convulsions require serious examination, eh?  I paid dearly this past Saturday for venturing out on a private lake for my husband’s canoe and kayaking class hosted with a friend.  Even though the water was treated with blue dye to prevent algae growth, it was there anyways.  I have never had such violent, animalistic, horrifying convulsions in these 2 1/2 years of seizure attacks as I did one hour after I returned home.  You would not believe the level of torment I endured continuously for 2 wretched hours!  The rest of the evening was awful too with a rebound of episodes on Sunday.  I lost over a day of my life in payment for enjoying a paddling outing with my beloved and some friends.  The biotoxin illness won and I lost.  Tell me how this is all in my head as the working out of an unhappy childhood?  NO WAY.

If the story of my sorry childhood made a difference to the “Hope Beyond” I would like the Gentle Reader to find, I would write about it here.  However in doing so I would risk selling myself short in the process for those who might not follow my whole story.   One of my blogs generally covers only one topic as in a chapter of a book.  Further, reading a posting about a waking nightmare that was remarkably similar to a very bad day a long time ago would put the focus on the past and not on the exposure to cyanobacteria earlier that afternoon.  And in the end we bloggers don’t need to share everything about ourselves to be heard, to make a difference in the literary world.  We only need to be genuine to ourselves, to our subject matter.  Should I need to share a scene from my past to make a point I might do so briefly.  To say more will put the focus in the wrong place.  I need to keep my eyes fixed on my great expectation for what lies ahead of me (and all who believe), in the glorious presence of my Lord and Savior.  One day when my life on this earth is over He will make right all that was not right back there and heal me then, if not sooner.  I believe there will be a blessing for my stewardship of the experiences, sacrifices, ministries, and choices of humility He allowed in my life if I have succeeded in acting according to His will.  And if I have acted according to His will then it is only because He helped me to do so!  This stuff is way too hard to make it on my own.

The story that truly makes a difference is not mine.  The story that has the power to transform the lives, the hearts of mankind is that of the person of Jesus Christ.  Let His own  Words of His life, His pain and suffering as chronicled in the Gospels (the first 4 books of the New Testament in the Bible) lead you to His throne of grace.  Lay your burdens before the One Who is, Who was, and Who will forever be.  Let His love redeem the pains of the past so that both you and I may live freely in His presence forevermore.  What great fellowship we shall enjoy one day soon!  What great joy we will know when He calls each of us by name Who knows Him as Lord and Savior.  Oh how I long to hear His stories of how much He loves us, He takes our prayers to the Father, and has prepared a glorious place for us to dwell in together:  Him and I; you and Him; the fellowship of believers; the cherubim and seraphim.  Yeah that’s where my focus outta be!

Philippians 4:8New International Version (NIV)

Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.

Oh yeah!  Now that’s some great writing!  ;J

The Nurse Who Wore Perfume

 

Nurse Ratchet from One Flew Over the Cuckoo's Nest
Nurse Ratchet from One Flew Over the Cuckoo’s Nest

After about 4 hours breathing fresh oxygen being pumped with fluids, I revived after a most bizarre episode.  The Benedryl made things worse yet brought about 12 hours of slumber on and off into the next day.  Whew!  What an ordeal it was . . .

Such is life when battling biotoxin illness, multiple chemical sensitivity, mycotoxicosis, Chronic Inflammatory Response Syndrome, or what-is-formerly-known-for-me-as Chronic Lyme Disease.  On Saturday I was counting the dollars and quarters from the neighborhood girls who bought friendship bracelets at our garage sale.  I noticed a familiar perfume scent on the money that reminded me of a houseguest not long ago.  Perhaps it was Flora by Gucci again?  Anyways, no sooner had I zip-locked everything into a sandwich baggie when I started to feel sickly.  Bizarre and violent seizures followed, ramping up and ramping down over the next hour.  Holy crap!

I knew I had overdone things somewhat working the garage sale and doing some yard work the day before.  But hey, we had some things to get rid of and were delighted to pass some items along for free.  The girls who bought the bracelets were adorable!  I couldn’t resist letting my initial Trinity Jewelry by Design originals go for 1/6 the original asking price just to see the smiles on their faces.  Of course the older sister next door would need and extra one for her sister who was away at a dance competition so 2-for-1 would be the best deal for her.  Same thing applied to her sister’s best friend who was in the midst of a little object lesson about not taking money from her mother’s purse to buy bracelets!  Lesson was learned and we had smiles all around.  I was so delighted to send them along and tell them the significance of the 3-bead design (for the Father, Son, and Holy Spirit!).  They looked down at their bracelets like they were hearing it for the first time.  That’s cool.  As they wear them each day I pray that the Lord brings more promptings of His love and gift of salvation through the Holy Trinity.

It’s Monday, I am breathing better today, and I feel reasonably stable.  The windows have remained closed as every-other neighbor seemed to be getting their lawns treated today with fertilizer and pre-emergent weed killers.  Ah the scents of Spring!  All fragrances don’t seem to bother me but I am not taking any chances one day after an imaginary trip to the ER.  Imaginary?  Oh sure, it’s all in my head you see.  They gave me a repeat psychiatric diagnosis probably leftover from the last time I was there over a year ago.  It didn’t matter that my biotoxin medical doctor from Michigan graciously called the hospital on my behalf with an update.  Chronic Inflammatory Response Syndrome just isn’t on their radar.  The ER Doc seemed to give the impression that he was understanding that the difficulty breathing, obvious seizure attacks, and intolerance to the cold hands of the admitting nurse were related to CIRS.  It has its own ICD-9 code don’t you know?  I guess they do not.  Out came the “non-epileptic seizures” and “feeling nervous” diagnoses.  I never said I was feeling nervous!  The third diagnosis was “tremors.”  Yeah, tremors that make your head bang aren’t really tremors are they?

Non-epileptic seizures have TWO causes:  1)  biological and 2) psychiatric.  Most medical professionals ignore the first cause.  If they were psychiatric they would happen only when I am under stress or have a need for secondary gain (like attention or control).  Sorry Doc.  These episodes happen unannounced, unprovoked, and at happy times.  They started with an exposure to a cyanobacteria when kayaking in a local reservoir with my beloved and some fun people.  I love my life with Steve and in general.  I am so blessed and grateful for so much even during this time of illness.  Armchair psychiatry without a work-up is wrong.  Test me.  I have nothing to hide.  So frustrating.

Shortly before the completion of the IV fluid and Benadryl treatment, a nurse came into the room to announce that the nursing shift had changed.  She checked the monitor and recorded my vitals before leaving the room in a puff of noxious and cheap perfume.  WHAAAAT?  Why do you think I am in the EMERGENCY ROOM NURSEEEE POO?  When she returned I gently but firmly asked her to leave and not return due to the same.  She said she had received “report” and knew why I was there.  HELLO?  ANYBODY HOME?  Two other nurses came in a bit later and before the IV pump alarm was set to go off (another sensory trigger).  I appreciated their timing and thanked them.  A bit roughly they disconnected the IV, removed the IV in my arm, and began to hurry us along.  Time to go!  I had to ask them to wait a moment as my body started seizing from the shock of the needle coming out of my arm.  Hey, it happens every time a needle goes in or out don’t you know? I really can’t make this stuff up don’t you know?  It simply isn’t worth it and would take too much energy anyways.  Just look at the outpatient records from the 21 IV magnesium treatments at that same hospital this past October and November.  Same reaction.

I felt numb on the way home.  My incredible husband made sure I was settled and quickly got outside to mow the lawn before dark.  I ate a light dinner as fast as I could to gain some strength before giving into the incredible fatigue.  Tic attacks woke me up several times as I slept for about a half of a day total.  The ordeal was over.  My third trip to the ER since becoming ill October 11, 2011 was over.

What do I do now, I wonder?  I mean there are binding agents that I can’t tolerate (chlolestyramine and Welchol) and one that I can (activated charcoal) tolerate but the latter doesn’t register on Dr. Richie Shoemaker’s biotoxin illness protocol.  During a wretched episode earlier last week the Lord gave me some insight that the activated charcoal might work better for me.   So a few grains of AC is all I am doing for treatment in addition to my own election for a mold-free, Candida, low oxalate diet.  Oh yes, and our home will become a safe-zone to reduce exposures.  Sadly there will be no more monthly home group.  I spent the last one in my bedroom with seizure attacks while the group worshipped, prayed, and fellowshipped in our living room.  Even the hint of fragrance amongst them was too much for me.  Sigh.  I  need the fellowship Lord!  And what about the friends and family who will be in town for my husband’s son’s wedding next month?  This is a heartache for both of us right now.  I love Steve’s adult children and his family.  I am grateful for them.  I guess I’ll be Skyped into the bridal shower . . .  And I doubt that I will be able to enjoy playing hostess to family that has not seen our home beautified since they were last here for our wedding 7 years ago.  It’s just so very risky.  Maybe it will be warm enough to visit on our lovely patio.  Hope so.

Oh well.  We’ll figure out something.  We always do.  Better leave that one for a future blog.  More prayer is needed before then fer shur.  JJ