Tag: Lyme disease

How do you measure a year?

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September 18, 2014 was a day when I rediscovered the power of friendship at a new level.  ‘Tis fitting that we would spend our time reading the Psalms as we shared our lives with each other then tenderly prayed together.  Perhaps this is what women who love the Lord Jesus Christ do, eh?  Except that we were not meeting for a weekly video Bible study at church followed by coffee and treats.  This one touched our hearts more at home . . . literally!

In the past I have enjoyed Bible studies the best when we all meet in each other’s homes.  There is no better way to fellowship than to be immersed in the family pictures, dog hair, and dirty dishes of the ones you come to love in Christ.  In due time the host and hostess let go of having a clean house for everyone each week as we focus on what is really important:  opening up the truth of God’s word.  Prayer time was always my favorite.  The bonds between us became palpable as we lifted up each other’s hurts and victories before the Lord.  I do hope we glorified Him in doing so.

When serious illness struck my life October 11, 2011 my life slowly changed to one of almost total isolation.  Oh there were many visits to medical professionals, clinics, labs, hospitals, and pharmacies.  They were all very nice people, of course.  Going to Walmart became a rare “date night” with my beloved husband when I could not drive myself.  The highlight of my week often became buying groceries; somehow I ended up spending a little more money there than I probably should have perhaps in an attempt to find some alternative type of comfort.  Somehow new pair of sweats or comfy top would jump into the shopping cart on occasion as well!

Then the Lord inspired me to break the isolation beyond this blog.  I had some casual connections to a few of you Gentle Readers which delighted my soul, by the way.  How could this become more personal?  I published a blog in September of 2014 asking if anyone would be interested in starting up a Bible study/prayer time via Skype?  Perhaps there were other gals out there who were largely homebound like me and ready to connect before the Lord’s table.  Two gals graciously responded:  YES!

Each of us had different reasons for coming together.  Each of us had our own blogs and followings, outside interests, and experiences with our health.  We represented 3 different decades of life, 2 different countries and States, living situations either outside larger cities or in the country, and only one blonde.  (She is gonna kill me for writing that!)  We bonded quickly.

One gal who joined our group to be an encourager ended up facing one of the biggest health battles of her life this past year.  Two of us went in and out of relapses with illness and one endured a major upheaval in her husband’s job situation.  Two of us have also met face-to-face twice with hopes of a giggly reunion of all three of us perhaps this year?  I hope so!  Together we (have) cried, we laughed.  We prayed; we shared silly stories.  There were exchanges of recipes, websites, scripture, and more. We were encouraged by the love stories of the Psalms ministering to our feminine hearts.  And most of all we became friends.

So how do you measure the value of a year in life?  As this passionate theme song from the movie Rent speaks of sunsets, cups of coffee, laughter, and sighs, I do know that on Thursday night we three have shared them all this past year.  I agree with the chorus line to:  measure your life in love.  Because of you my dear ones, my year was richly blessed!

Thank you ladies for changing my life and ministering to me in a way that has made a difference.  May the Lord be glorified in all that we say and do, all that we write, and in the prayers that we lay before His throne of grace each week.  In the meantime,

“I am going to Rome.”

You two know what that means!  Happy one year anniversary!

Seeya next time ladies.  Love you, Julie

Known in the Gates: Part 2, The Inside Story

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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 . . .

Known in the Gates: Part 1, Not Forgotten

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For those of us around when the iconic movie of the 1985, The Breakfast Club, came out, we probably asked ourselves which character we liked the best.  Was it the one called Sporto, the jock?  Carl, the criminal?  Brian, the brain?  Molly Ringwald’s character, the princess?  Or maybe it was the outcast gal in black?  (what was her name?)  Here’s a little refresher with the song that still gets my heart rate going, my feet tapping!  How about you?

This is one of those songs that once you hear it, you won’t be able to get it out of your head for about a day!  Sorry.  I really like this song!  I really liked the movie too.  The character that resonates with me these days is Allison Reynolds played by Ally Sheedy.  If you don’t want to watch all of the clip below, kindly forward to the scene in progress around the 5:00 to 6:15-minute mark.  It’s where she confesses her deepest sorrow:

Yes, I get this type of sorrow.  Try being sick with a serious illness for coming up on 4 years and see who remembers your name?  See who identifies with your struggles?  See who bothers to ask, who bothers to call?  The numbers have dwindled for me for sure.  I have kept in touch with my closest friends from Illinois and made new friends in the recovery-from-this-or-that communities online.  My beloved husband (whom I met then married here in Indiana), Steve, has hung in there through with me the worst of the torment, the lifestyle changes, the failed treatments, and the thousand-plus nights with disrupted sleep.  (Watch these videos if you want to know what I am talking about.)  Some folks I know have graciously followed this blog through it all.  Thank you!  I am always delighted when I hear from one or two of them now and then.  Nice.  Well sort of.  It’s just not the same . . .

There is a place where I am known very well and keep in close contact.  There is a place where I have not been abandoned, ignored, discounted.  The place where I matter most and my closest companion is always there, always here with me.  That place is in the arms of my Heavenly Father through my personal relationship with his Son, Jesus Christ.  He never forgets about me!  I savor His words He speaks of me (and you too, Gentle Reader) from Psalm 139:

For you created my inmost being;
    you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
15 My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.
17 How precious to me are your thoughts, God!
    How vast is the sum of them!
18 Were I to count them,
    they would outnumber the grains of sand—
    when I awake, I am still with you.

Oh how I wish I knew these words as a young woman when I first saw The Breakfast Club!  What matters now is that I get to lean on these words all of the time now in the quiet, dark places I have visited when alone with my Lord.  He has never forgotten about me.  I have always felt His presence even in my greatest hours of suffering.  He has spoken through the Holy Spirit often.  I have never felt “lonely.”  The Creator of the universe loves me!  I am so grateful.

But how well does he really know me?

To be continued in Part 2 . . .

Get this book!

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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

The love in my comb

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Gently he pulled the brush through my hair as if each stroke was a special salve for my soul.  You could hear nothing in the silence, not even his breath or mine.  The darkness fell between us.  The moment hung there in time.  We had just witnessed so much . . . there was no need for words.  Only love moved from his hand to me, gently freeing the hairs once tangled in the madness that had just gone before us.  You might see this as an act of romance I suppose.  But this night no romance would explain this kind of tenderness that now drifted between us.  We simply enjoyed the silence, the calm, the love lain there slightly wounded just up from the floor.

That love was near me that night alright, well within my grasp.  Oh I felt it with each stroke of the brush that was the tool he could reach first in the awkward darkness.  I felt it from his warmth standing closely behind me as I sat with my legs uncomfortably collapsed underneath me on the hard tiled floor.  The rug, marred with uneven loops from the dogs paws underfoot where she slept each night, gave little warmth.  My hair was wet and so were my shoulders.  The stuggle that came with forcing myself to wash my hair in the tub at the tail end of a convulsive episode had subsided into a senseless stupor.  With my broken sentence my beloved found my grooming basket under the sink.  It made no difference what implement he chose.  His love would find its way to me with soothing swiftness followed by the tempo we might take one fine day, walking along a seashore somewhere beautiful.

Oh that I should have such an opportunity again!  Will his capable hands finger their way through my auburn hair blowing in the warm sunshine of a summer day?  Would he tighten the drawstring clasp beneath my chin of the paddling hat matched with our tandem outrigger canoe as we headed out onto the glistening lake?  Or when his arm slips around my waist as we laugh at our pup racing along the stream of a wooded path, will I forget that our tender moments were once matched with sorrow so deep?  I do hope so, Gentle Reader.  For all of us who suffer what we ought not to endure, I do pray that restoration, healing, and mercy will cover what was once ugly with that which is lovely again and again.

Until that glorious day for me, I shall keep my eyes fixed on the sunshine streaming through my bedroom window.  I know by Whose creation it shines and that one day all will bow and marvel in His glory, fully well, fully at peace.  The love of our Lord, Jesus Christ will comfort and redeem our suffering beyond what the ones we cherish could ever do for us.  And yet their heartache for sharing this journey with us shall be rewarded too.  The darkness shall fade away forever for all of us one fine day.  Only His light will reign and the darkness shall be no more.  In that day my friend, we will comb the heavens never finding an end to joy for all who believe, for all who hold out for the hope of heaven.  Together we will dwell in the presence of the King of Glory!  Yes, indeed.

Sigh.  That day is not here yet.  What is here is the love of my life holding my comb in the shadow of night.  He lifts me gently into bed and covers me with love that I could never imagine in the past.  He is my Jesus with skin on when I need them both.  I am so blessed.  How could I ask for more?