I’m stuck to my chair!

Again it seems that my greatest clarity of thought arrives after 3:00 a.m.!  Such a strange phenomenon.  I am always amazed at all of us web crawlers on Facebook at this tender hour.  So I’m not alone after all.  So it’s o.k. then, right?

Sometimes I’m not so sure I’m doing this thing right:  trying to recover from a serious illness that is.  The findings, colorful cords, and beading wonders of Trinity Jewelry by Design sit right behind me, untouched for almost 2 months.  The creative juices appear to be flowing more through the keyboard than the macramé knotting board these days.  Who can think in color when just three  hours earlier I was nearly wretching from the noxious seizing of my once functional central nervous system?  Tics of organic origin.  Non-epileptic seizures.  Whatever.  I miss the once creative and functional Julie!

My beloved Steve is so gracious with me at these low times.  All I could do tonight was yelp and squeak a bit as he sat within earshot in our nightly arrangement of sorts.  I muttered a “help” and he came near, warming my frigid hands and feet with his comforting frame.  The episode continued, alas, for another hour or more.  Frankly, I lost track of time.  All I know is that I did not make dinner this evening; I’ve got another shot at making his lunch for work tomorrow after we part ways tonight Gentle Reader.  Looks like I’ll be able to pull some good eats together this evening after all.

In the song by Casting Crowns, Mark Hall sings of praising the Lord in the heartache of life’s storms.  Perhaps you remember this moving Lifesong ballad from 2006?

Praise you in the Storm

Yes, and perhaps you remember me posting it in a previous blog last year as well.  No big deal.  No matter how many times it takes, no matter how many tears may fall, and no matter how many blog posts you may endure the message will still be the same:  my face is towards my Immanuel through the storm to the rainbow waiting for me at it’s end.  Period.  There is nothing else for me to do.  My Lord has seen fit to keep me here with lightening bolts running through my mind each day.  Seizures can kill people.  I am still here.  For me the seizure attacks are a bit of a right of passage.  The more I have, the more my angst turns into breaths of anticipation.  What will come with the next breath?  No worries about tomorrow.  The moment here and now!  If my mind wanders to anything stressful, the symptoms worsen.  So I am learning to live in the length of one breath at a time.  One s-i-n-g-l-e b-r-e-a-t-h at a time.rainbow and storm clouds

No wonder it is difficult to leave my chair most evenings!  I am weak and tooling around on the computer is certainly a step up from lying there, writhing in bed.  Nausea and sweats can increase if I do too much unless there is some sort of a clearing phenomenon first.  When that happens I do as much as I possibly can before the freedom ends.  Sometimes I’m  not quite finished with a task when sickness returns; it’s always a bit tricky when that happens.  And that’s when the Lord adds His incredible increase, endurance, grace.  I cling to the God-breathed promises of His Holy Word and He delivers me without fail.  This is where my spiritual gift of faith comes from:  witnessing His faithfulness in my times of need.  Faith brings hope as well.

He is worthy of your cries my friend.  No matter how big or how small, the God of infinite mercy and love is ready, willing, and able to receive the desires of your heart.  If you don’t believe me then your definition of God is not big enough.  ‘Nuff said.

I guess it’s time to get up now.   Will it be leftover barbeque meatloaf or smoked turkey sandwiches for lunch tomorrow?  Gee, maybe I can even melt some cheese on the bread for a tasty treat.  I love spoiling my Stevers.  He is so good to me.  :J

The Writing is Divine

Magazines have always held my interest more than novels, textbooks, or even the subtitles of an award-winning foreign film.  I just don’t have the attention span for more than a couple of thousand words in a row!  I guess that perfectly places me in the realm of the lone blogger, hacking out short articles of inspiration (or perspiration?) well into the dead of night.

And not everyone’s rants hold my fancy for the five to twenty minute allotment I’m willing to spend.  Take the Editor’s column in a popular automobile magazine that graces my husband’s setting at the kitchen table every month.  This car guy’s language is so thick with adjectives, metaphors, and strained attempts to make an inanimate, mechanical object organic that I grit my teeth to get from the beginning to the end.  Just say it plainly Sir Editor!  He probably has a journalism degree.  I suppose that gives him license to use more words, write longer sentences.  Not me.

I am moved by the languid composition of words that flows like butter running off a freshly boiled ear of corn.  Gotcha, didn’t I?  Just couldn’t resist!  Perhaps the best example of the terse and poetic, the impactful and inspired comes from God’s Holy Bible.  The Word of God is an amazing work that tells of the physical and supernatural, good and evil, things infinite and small, and everything in between.  Where else can reading a single verse change a person’s destiny forever?

1 In the beginning was the Word, and the Word was with God, and the Word was God. He was with God in the beginning. Through him all things were made; without him nothing was made that has been made.  (John 1)

In the wonderful mystery that is God, we find power in His Word and receive His indwelling Spirit when we come to know Him as Lord and Savior.  I do not claim to understand how this works by reading and meditating on a few chapters in the Bible.  Mentioning it here simply illustrates the finding that the power of a written word comes from the author’s mastery of the subject matter and his ability to communicate it to the reader.  For the Bible, the God of the universe brings us Himself and everything we need for life in His handbook for living as communicated to faithful men of God who wrote it down for us to read.  His Holy Spirit stirs within us as we dwell in the presence of the King’s scrolls.  Moreover, we come to understand who He is, His plan for our lives, and are drawn into fellowship with Him.  This fellowship can last forever if we but believe what He has written for us, summed up nicely in John 3:16:

16 For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.

Now these are words that draw my heart and mind in a meaningful embrace:  the promise of living forever with my Lord and Savior, Jesus Christ.  Such a simple message really and yet one that changes everything.  Let’s see it in action in a little longer passage from the Old Testament, often called the bedtime Psalm:

Psalm 121:  A song of ascents.

I lift up my eyes to the mountains—

where does my help come from?

My help comes from the Lord,

the Maker of heaven and earth.

He will not let your foot slip—

he who watches over you will not slumber; (italics added)

indeed, he who watches over Israel

will neither slumber nor sleep.

The Lord watches over you—

the Lord is your shade at your right hand;

the sun will not harm you by day,

nor the moon by night.

The Lord will keep you from all harm—

he will watch over your life;

the Lord will watch over your coming and going

both now and forevermore.

Now I can sure wrap my mind around these timeless and comforting images written long ago.  I started a Bible-reading plan through “The Bible App” on my Android phone at the end of last year.  I love it!  (There’s even a narration option for listening to the verses spoken aloud.)  Reading 3 to 4 chapters per day beginning in the book of Genesis goes quickly in this plan for reading the entire Bible in a year.  While I do not understand all of the ancient culture, I am amazed at the Lord’s attention to every detail in the lives of His people.  His love and care translates to you and I as well in the present day, when we spend a little time reading His Divine Word.  I am so glad to have found the best writer of all time and hope that my own words will honor Him too.

Well, there it is.  Simply stated and inspired by the One who wrote this special message on my heart for me to share with you today.  No words are more important than His.  Will you join me in spending a little time reading the Bible each day?  I promise you that it will be worth any amount of time you devote to dwell in His presence.

Connect with Just Julie

Hi Gentle Reader:

Just updated my interview page at Smashwords where you can find my eBook entitled, Hope Beyond Lyme:  The First Year.  View the interview at:  https://www.smashwords.com/profile/view/justjuliewrites

Would love to connect with you via your comments on this blog or try one of the venues below.  Take care and “talk at ya soon!”  JJ

Facebook: https://www.facebook.com/NewHopeBeyondLyme
Twitter: https://twitter.com/TrinitybyDesign
Blog: http://justjuliewrites.com
Smashwords Interview: https://www.smashwords.com/interview/justjuliewrites
Smashwords profile page:
https://www.smashwords.com/profile/view/justjuliewrites

Hope Beyond Lyme:  The First Year eBook now available on Smashwords and Amazon.com
Hope Beyond Lyme: The First Year eBook now available on Smashwords and Amazon.com

My Story in Brief

Here’s a brief overview of my wacky journey to date, written for another blogger.  I’m hanging tough as this time of illness continues, leaning on the Lord and witnessing His grace in my life every day.  I have so much for which to be grateful!  You too?  :J

First Name: Julie
Age:  53
Gender:  Female
Where do you live?  Fort Wayne, Indiana

When/Where do you suspect that you contracted Lyme?  My doctor suggested it as a possibility in January of 2012.  He’s a family practice physician and chiropractor.

When did you first begin to feel ill or start to notice strange symptoms?   I have had fibromyalgia since 1992 in addition to some thyroid and female/hormonal issues.  Regardless, I was the fittest I had ever been in my life when I became extremely ill with viral hepatitis in October of 2011, after kayaking in a local reservoir.  When was unable to recover as time passed, my LLMD suggested underlying Lyme and that I read about mold illness too.

What were they?  The worst symptoms included:  ongoing nausea, increased muscle pain and headaches, decreased activity tolerance, worsened ringing in my ears, back pain, lightheadedness, extreme fatigue, fractionated sleep, and genital, stomach,  and dental pain.

How many doctors did you see before reaching an accurate diagnosis?  If you start from the fibromyalgia diagnosis in 1992, the number would be around 60 including chiropractors and a naturopathic physician.  If you start with October of 2011, it would be 2:  the emergency room NP and my LLMD.

Were you misdiagnosed with anything prior to being diagnosed with Lyme? If so, what?   It’s unclear if the myriad of health issues over the past two decades are related to Lyme Disease or not.  I started treating for Lyme (first with antibiotics then a Rife machine; supplements too) after confirmation of the diagnosis from biomeridian or electro-dermal testing in January of 2012.  A year later we discovered that we had mold in our home and remediated our entire home.  I had a significant history of mold exposure in a work setting about 6 years earlier and a genetic disposition that favored mold illness more than Lyme disease.  Another year later and currently, a systemic yeast infection (level 3 of 4 levels) has taken center stage in my course of treatment.  The treatment of Candida has been as difficult as that for Lyme or mold!

What are the main symptoms that you experience currently?   Virtually every day I feel like I have the flu, experience muscle and joint pain, endure headaches/neck headaches, and battle weakness and fatigue.  The other symptoms noted above persist as well.

The WORST SYMPTOM by far is that of seizure-like episodes!  The first episode happened one month after the onset of viral hepatitis.  Then I had no episodes until I began treating for Lyme disease with the Rife machine and after the initial trial course of 5 weeks of antibiotics.  Seizure attack episodes thus began around April of 2012 and have gradually worsened since then:  generally up to 4 hours per day!  If I did not have a personal relationship with the Lord, Jesus Christ, I would not be able to endure this personal hell. 

What does your treatment regimen look like?   I can no longer tolerate virtually all of the supplements or compounded medications for Lyme or mold illness without the seizure attacks escalating into convulsions!  I have maintained an increasingly and very strict Candida and mold-free diet for the past year.  Treatment focuses on Candida (rotating anti-fungal meds. & supplements as tolerated); I am no longer able to tolerate the compounded medications of Dr. Shoemaker’s protocol for Chronic Inflammatory Response Syndrome (www.survivingmold.com)


How much do your symptoms prevent you from living a normal life? 
My life is severely restricted to chemical/fragrance-and-mold-free environments and settings void of loud music and bright lights.  I have not attended our church in about 8 months as it is a water-damaged building.  Physical deconditioning restricts former activities including kayaking, bicycling, walking and gardening.  I am grateful for the occasional exceptions and was able to maintain some raised bed gardens this past year.  Yeah God!  Travelling is particularly difficult and severely exacerbates seizure attack episodes no matter what precautions we try!  After 30 years as an occupational therapist, including adapting my career with various events of my life, I have not been able to work in 2 years.  I miss working!

What do you like to do in your free time and how is this different than before you were sick?   As tolerated, I blog in the middle of the night at:  http://www.justjuliewrites.com on topics incorporating my faith in God and hoping to encourage others with my story of recovery from chronic illness.  I am grateful to have published an eBook this past October entitled:  Hope Beyond Lyme:  The First Year   In August of 2012, I started making macramé hemp jewelry to keep myself sane; today I am grateful to offer jewelry from two missionary organizations helping families at risk.  A donation will be made to Ianna House (a residence for persons with Lyme Disease) for all Lyme disease awareness items purchased at:  Trinity Jewelry by Design.


What do you want people to know about Lyme?   
Examine carefully and journal your symptoms (response to treatment, etc.), do online research especially at http://www.ilads.org including vector-borne co-infections, join online Lyme forums, do  IGenex testing (www.igenex.com), find an experienced Lyme AND mold literate physician (s), and consider several treatment options as you begin this long journey to healing.

What are you most thankful to have gained, or what important lessons have you learned, from your experience with Lyme?   I don’t know how anyone can recover from this difficult illness without two things:  1) the love, care, and support of other people in your life and 2) faith in the Lord, Jesus Christ who loves you, sees your suffering, grieves with you, and will carry you through the ups and downs of this difficult journey.  He is our true source of hope!  When struggling with hours of seizures at night, He meets me there every time and comforts my weary heart, my weary soul, my weary frame.  Sharing my faith with you is my reassurance that this experience won’t be wasted!  I welcome your thoughts and would love to meet you, Gentle Reader, through my blog (www.justjuliewrites.com) or on Facebook at:  Hope Beyond Lyme.  Take care, Julie

He knows

Whenever I am down and out

Instead of rising up and giving a shout,

I’ve learned to keep my big mouth shut

And hold my poker face to save my gut.

I used to sputter and blurt out a reply

And earned a reputation like that of an un-nice guy;

They called me “bold” but it got me no where

Just too many nights right here alone in my under____.

Well not really but it rhymed you see

‘Cause appearances were all the rage back then to me;

All the while He waited in silence

Beckoning me with hope and a promise.

Decades flew by and it weren’t too pretty

My youth faded:  I lost more than an itty bitty:

My husband, my mom, my brother, my dad

I had more than enough reasons to be quite sad.

So where did I land when the fires took it all

The shell of a woman who once spoke a little too proud and tall?

****************

Hmf.  This broken child crawled before the throne

Put down my sword and picked up His own.

The dragons we slew:  the Christ Jesus and I

My strength now His, my voice that of One on high.

My steps softened, tears sweetened at last and for better reasons

Even the fruit of my labors grew differently in the coming seasons.

I have not any idea where all this will go

Will I ever “get there” or find the answers I need to know?

It almost doesn’t matter ’cause even one bummer leads to the next joy

So ‘just hold on Little Julie, this next chapter’s gonna be quite a ride!

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