the pilot or maybe the preface

You know how, when you begin watching a TV show from the first episode, there is usually a pilot.
Or, how some books begin with a preface.  The author wants you to understand how the story you are about to read came to be.
Consider this blog post the pilot, or maybe the preface.

Hi, my name is Liz and I have Lyme Disease.
I didn't just get it, it's been a little over 4 years since I first became sick, but the official tested diagnosis is not even 6 months old.  I started treatment a few weeks back- an off the beaten path, Germany driven, intense and invasive type of treatment that I will share (detailed) in upcoming posts.  You will get to follow this journey from the first day of treatment until the last day.  I'm letting you in- not because I need or have to but because there is a precious person out there who is suffering as I am.  For you, dear friend, I am sharing my story.  So that we know we are not alone in our journey's- Maybe me sharing will help you or maybe you sharing will help me.  Whatever the case, we will travel together this difficult and grueling journey of Lyme Disease.

Here is a glimpse into the world of what it is like to have Lyme Disease.  It is taken from my personal Journal.

July 8, 2016

Exhausted is to kind of a word.  Placing words before it such as “gruesomely” or “gut-wrenchingly” is needed to qualify the definition of “exhausted”.  It’s interesting that they both begin with a g.  Is that my mind thinking that way because I cannot think of any other words?  My thoughts are pressed into a little invisible box…but there I go again, rabbit trailing.  This disease does that as well- it paralyzes your ability to expound on thought, my mind overwhelmed by what seems like many channels that get jammed with bad reception.  Will I ever get better?  Will this fog lift?  My fingers are even almost too tired to lay here and produce the simple effort it takes to type.  In moments like this, a fighter like me feels too tired to fight.  I just want to lay here and not move any more than absolutely necessary.  What takes over a mind and body so strong that it can cripple even the will?  It’s a feat of great despair.  It takes the color out of life, and leaves you a shell of the person you once were.  No longer is there vigor, only the distant hope of being “better” someday and the victory of getting through another day until you can lay in bed again, but at this night-time hour, it’s at least normal.  I don’t feel as guilty for not being able to be up and function.  Night time hours make me feel more normal.  The rest of the world is laying down too. 

In my worst moments, which happens more often than I would like, this is what life feels like:  My heart pounds like I have run a marathon and my whole body becomes shaky like I have lifted boulders all day and I might crumple any minute.  I have an irresistible need to lie down.  I start to feel dizzy and almost drunk.  Is it my adrenals?  Glycogen levels?  I don’t know what is happening but I feel like I might have an emergency.  Sometimes life seems like a vague recollection of a dream…I am not sure when I am conscious if I am actually in reality.  Living color seems unreal to me.  Noise is shrill and overwhelming and there is so much chaos in my head that when people talk to me and ask me question after question, I become angry.  My children are great at this, and unfortunately they bear the brunt of my weakness.  Some days I feel like even taking my next breath I fight against an enemy under-tow daring to pull me out to sea.  It’s an invisible battle that you can’t see past carefully placed makeup and curled hair.  Inside my head there is a person that knows they cannot carry on a conversation because the sheer pace of mental processing that is needed makes me have to work so hard to stay on track.  After a few minutes, I must have silence to process.  My brain sludge’s through muddy waters.  It’s exhausting.  It feels exhausting to even talk.  It’s much easier to write like I am doing now.  It does not require my brain to use the mental processing to both think AND talk.

It’s a lonely world, having to fight the battle for yourself, even with the blessed support of so many loved ones.  It’s hard to champion yourself in looking for answers when you feel such a push back in the health industry.  And it’s hard that most people have no idea the battle that rages invisible in a body plagued with Lyme.  To most, it’s no more significant than a nasty case of strep.  Lyme is so un-validating.  I am only beginning to understand the information about co-infections.  I don’t know what all I am up against, but I am desperate to get better.  I know I need to do it soon, because though I am a fighter and I will push hard to get better, I feel my willpower draining away.  It’s making me more and more apathetic and I am pushing to keep it at bay.  I think there is just so much to think about, too much to process.  I am hoping that that’s why I am feeling numb to everything. 

I am fighting feeling numb spiritually too.  I can lift my hands in honest praise, and then yell at my kids the next minute.  I can feel hope beckon me out of the dark and know that God sees me as I run to the rock that is higher than I, and in the next hour am doubting the power of prayer and the heart of my Lord toward me.  I feel the weight of the world on my shoulders and I try to bring it to the Lord only to feel it pressing down again.  I feel like a failure in life and terrified of this season.  I know that Satan is trying to bring discouragement yet I refuse to let him see any victory in my life…even in this, I know that God can use it for good.  For my families good.  I am begging God to be my strength, because this season has far surpassed anything this stubborn woman could give.  It has taken me to my knees, which is right where I need to be.  I am thankful that God understands my heart, past the Lyme brain that makes no sense.  I don’t have to labor over conversation with God- He knows.  He is my resting place even in the storm.  I have learned so much over the past four years about trusting him when my boat is shaking and roaring with the wind and the waves, and the sound is screaming at me that I will not make it through.  I scan the horizon, looking for my Savior to come walking through the storm and offer me His hand.  I will take it, and I will not let my circumstances tell me how hopeless it is.  I will not let this world dictate my assurance- it resides in Jesus Christ alone; My heart and my flesh may fail, but He is my strength and my portion forever.

 

This picture was taken just before I became sick- back when I could jump and run and humiliate my children :)