And in the meantime . . .

November 20, 2011 around noon.  I was alone when my body began shaking uncontrollably.  I was having difficulty thinking clearly and my speech was strained.  All kinds of fearful, crazy thoughts ran through my mind including blaming myself for what was happening!   It was the day after travelling about 16 hours to see family out of State and my husband had gotten up early after just a few hours of sleep to go to church and out to lunch with everyone.  Having never fully recovered from viral hepatitis 1 1/2 months earlier and somehow surviving the extended car ride, there just wasn’t any strength left to get up in the morning and join them.  Now I was immobilized and terrified of what was happening to me.  Somehow I figured out that low blood sugar was worsening the symptoms.  Finally I figured out that I needed to call Steve:  he could bring home a take-out lunch for me from the restaurant and I would hang on until he got home.  The only problems is that everyone was stuck on the other side of town anyways, with the drawbridge up that connected the roads between us!  Flash forward about two hours and the episode was over.  I fell into a fit full sleep and showered much later that day, pretty beat up from everything and quite embarrassed too.  What had happened to me?

April 15, 2012 at 3:00 a.m.  I awakened on my birthday with a nightmare and unusual shaking.  The nightmare wouldn’t stop even though I was awake, whether or not my eyes are closed.  I remained awake a long time, unable to fall back asleep.  This incident occurred nine days after beginning to use a Rife machine, six days per week.  (A Rife machine generates wavelengths of light and sound in program sequences designed to match the vibrational frequencies of various tissues and organisms in the body.)  Treatment for Lyme disease had begun in January with a 5-week course of antibiotics then continued with Rife treatments late in March when I could not tolerate the antibiotics.

April 18, 2012 at 9:20 a.m.  After running 15 minutes of various Rife programs, I was shivering uncontrollably.  My hands and feet felt extremely cold.  Fatigue overtook me and I napped almost two hours.  I woke up feeling somewhat rested until crashing after additional treatments including the beginning of a series of magnesium injections.

April 19, 2012 around 5:20 p.m.  I am suddenly awakened from a post-Rife treatment nap with the barking of our dog.  I am unable to move for almost 30 minutes.  My mind is dull yet rested until the second Rife treatment two hours later when I felt depleted once again.  I learned that this can be a typical response to various treatments for Lyme disease and is often called a herxheimer reaction.

April 21, 2012 around 3:30 p.m.  From my treatment journal I note, “moderate then moderately severe tics as I went to take a nap.  Cast out with calling out the name of Jesus.  Calmed.  Re-started.  Called out 2-3 more times and stopped.”   A two and one-half hour nap followed shortly thereafter!  Napping became my pattern after running Rife programs; my days were consumed with managing all the aspects of treatment.

The attacks of tic episodes continued every other day or so, mixed with nightmares most every day through the rest of the month of April.  Beginning May 5th, the low grade and severe tic episodes ramped up to virtually every day.   Most often they occurred when falling asleep after a Rife treatment or when trying to fall asleep at night.  The first extended episode that appeared to be a full-blown waking seizure was on May 12th after a nap.  It lasted 1 1/2 hours!  I struggled to keep myself from hyperventilating or stop breathing altogether.  Talking or voluntary movement were extremely difficult and made the attacks worse when attempted.  I cried!  My body temperature dropped and both thirst and hunger pangs increased dramatically.  I was miserable, exhausted, and terrified all at the same time.  While the nightmares would continue most days for another two weeks, they generally ended and recurred occasionally when taking a new medication or supplement.

Flash forward one year.  We remediated our home for mold early in 2013 and both my medication and supplement regimes had changed many times.  The seizure attack episodes increased to a couple of hours on a daily basis with some patterning in addition to after exposure to noxious stimuli.  I stopped attending worship services at our church since it is a water-damaged building with mold.  A recurrent urinary tract infection required treatment with a series of different antibiotics.  The seizure attack episodes escalated into convulsions 1-2 hours after taking an antibiotic.  My world continued crashing in on me as I began reacting to more and more foods, supplements, and types of noxious stimuli including loud music and bright lights.  The tic and seizure attacks ramped up in the summer of 2013 to 3-4 times per day for a total of four hours per day and continued at this level for the next EIGHT MONTHS UNTIL JANUARY OF 2014.

In January of 2014 I was very beat up from the wretched seizure-like episodes.  Remarkably they generally decreased to three hours-per-day in February after a series of extremely strict dietary regimes:  a stricter, no-low-starch-veggie-Candida diet; Candida and mold-free diet; Candida, mold-free, and low sulfur diet; and finally where I am right now:  Candida, mold-free, and low oxalate diet.  I have religiously documented my treatment protocols and responses to them, tracked trends, consulted with neurologists & a pulmonologist, networked in numerous online forums and support groups, and researched every angle of this illness to no avail.  Overall these days, this sickness is looking more like a biotoxin illness than Lyme Disease as evidenced by some genetic testing of late.

As of February 2014, some improvements have come including being better able to stay asleep and having stronger nails!  My hair is thinner and so am I!  However, I am largely deconditioned from intolerance to a full daily schedule of activities including exercise; headaches, global pain, ringing in my ears, and more have worsened.  I haven’t worked in two years and am homebound much of the week.  Concentrating on my hobby jewelry business is extremely difficult.  Somehow I have still continued to blog and am grateful for a two-week improvement in my cognition long enough in October to publish my eBook:  Hope Beyond Lyme:  The First Year.  I am grateful for all of the wonderful fellow sojourners I have met these past 2 1/2 years and have made some new friends too.  When I see that a non-believer has read this blog, my spirit soars to think maybe the Lord is using my trials to reach others with hope for His glory!  To see the Lord, Jesus Christ, as my sustaining grace and a source of hope for enduring the trials of this life makes this blog more than a journal and for that I am humbled, grateful.

And in the meantime . . . I am ready for the seizure-attacks to stop, of course!  My neck is killing me from all of the thrashing about you know!  I grieve the loss of time, the thousands of dollars, the stress, the isolation, and the strain on my beloved Steve.  Will I become disabled or return to work?  There is only One who knows the answers to that question and another big one, “why?”  Gentle Reader, if you have read this blog before, you know what I am about to write here:  it’s o.k.  I’m going to trust the lover of my soul anyways, no matter what happens.  I may try another treatment approach before I can see the doctors in a new clinic up in Michigan next month.  High CBD hemp oil (legal in all 50 States) has been shown to work well for both children and adults with seizures and who knows, it just might help me too.  However, I have been down this road of hoping for a cure before, only to have things worsen.  Yeah, supreme bummer for sure.  Sigh.  It takes what it takes.  Sometimes we wait and sometimes we go backwards.  If the Lord leads me to some new information and gives me the ability to search it out . . . if my husband agrees . . . if the resources present themselves . . . and if there are no barriers after prayer and sleeping on it . . . sure, Ima gonna try it.

So when it works, Lord willing, you can join me in rejoicing for having hung in there with me along the twists and turns of this difficult journey.  I hope I remember to lean on the Lord when times are good as well as when they are bad.  Please help me keep my Jesus in front of me as He goes before me each day.  Now let’s all get ready for some good news, k!

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

Taming the Savage Beast

“Don’t cry.  Don’t raise your eye.  It’s only teenage wasteland,” sung by Roger Daltry and Pete Townsend of The Who in Baba O’Riley, 1971.  (Decca Label)

The first rock concert I ever attended was “The Who” at the Pontiac Silverdome in Michigan.  The venue doesn’t exist anymore and neither does the band!  I will never forget the experience of seeing so many drunk, stoned, and wasted young people in one place before:  the place probably held 80,000 of them that night!

I got to go to the concert for free as a member of the Warren Jayteens.  The Warren Jaycees had a hot dog booth at the newly constructed Silverdome and we earned money for both of our community service organizations by working in their booth during Detroit Lions football games.  The Who concert was to be the first rock concert scheduled at the Silverdome.  When our Advisors in the Jaycees asked us if we wanted to work at the concert of course we said YES!!!  Gratefully we ran out of our supply of hot dogs that we sold as Hawkers in the stands just as the concert was about to begin.  We walked along the first level searching for the best view of the stage from the back of the seating area.  It didn’t matter that we did not have seats.  We were there!

I was there for the music.  It appeared that virtually everyone else was there to get “wasted!”  Sure is funny how my use of the term “wasted” has changed over the few decades since then.  Flash forward and it appears that my hope these days is that my life and what happens to me will NOT be wasted!  Time and experience are precious gifts to me:  a blessing from the Lord to spend reveling in His glory, His plan for my time on this earth.  We can’t take back either one after they are spent nor can we do them over again.  So I want to be fully present in the gift of, well, the present and rest in its purpose or meaning.

Therein the challenge lies.  How does one make sense of the savage beast that has become a part of my daily life?  Shall I accept this thorn in my flesh or fight for the cure with every resource available to me?  Do I drag my beloved husband through the details and horrors of every experience or escape alone:  just my Heavenly Husband and me?  These are the questions with which I grapple these days.  And more often than not, my quest for meaningfulness falls short in a pile of wasted time, lying on a bed, seizing from head to toe.  Then there’s the recovery phase.  Such a raw deal at many levels.  Wasted indeed, or so it seems.

There is no taming the savage beast at this point in time.  Oh sure there are things I have learned to avoid that make the seizure attack episodes worse like consumption of simple carbohydrates, new treatments, exposure to mold and noxious sensory stimuli, and travelling away from home into unknown environments.  But to make them go away:  not a chance so far.  I haven’t had an episode-free day in many months.  Two years have gone by in this personal hell.  This past week landed a night with a total of 6 hours of seizure and convulsive episodes with a 4-hour break in the middle somewhere in which I think I either passed out or slept.  Yeah, that night was supposed to be part of a special visit with family at their newer home out of State.  By the grace of God we had a few fun moments despite all of the suffering and post-seizure noxious symptom load thereafter.  Guess you could call those minutes His redeeming grace.  The scene captured below with my adoptive grandson, Jackson Rees, is a treasure to me.  Treasures sometimes come at a price.  Price paid.  Moment not wasted.

Jackson and Julie looking out the window

And so it goes.  Treatment continues for a systemic Candida infection.  Treatment is on hold for Lyme disease and the mold-related illness called Chronic Inflammatory Response Syndrome.  In this moment in time I just hope that the food I ate an hour ago didn’t have too much starch to turn on a yeast rock and roll concert in my brain.  As I close here, I guess I’ll just look out of the window of my mind and note the wonder that lies beyond.  This too shall pass and with it will come an amazing story of the Lord’s sustaining grace through the firestorm of illness.  (Philippians 1:12)

I am so very grateful for my Lord and Savior:  Jesus Christ.  I just couldn’t make it without you!  And if it is Your will precious Lord, please end this nightmare.  I am ready to live again.

Philippians 1:21 (NIV)

21 For to me, to live is Christ and to die is gain.

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

For more on non-epileptic seizures of biological origin, see the You Tube video in a previous blog:  Hell on Earth

Gift idea to encourage those with chronic illness

The first year enduring and battling a serious illness can test everything we thought we knew about coping with the trials of life.  In this book, I share some of the more meaningful and encouraging moments of my journey as I sought to draw strength from outside of myself to endure them.  My hope is that you or your loved one will find strength and hope that transcends the often difficult day-to-day experience for yourself or a loved one coping with a debilitating illness.  I also hope that you will consider the hope found in a personal relationship with God.  His presence in One’s life can make a difference in where a person lands when this particular journey of life is over.  Will we have peace or will we have despair?

With a sincere heart it is my privilege to share these short vignettes with you.  Let not these trials of ours be wasted, eh?  Gentle Reader, are you ready for enduring hope that goes beyond what we can see?  If your answer is, “Yes,” then I invite you to read, Hope Beyond Lyme:  The First Year.  May it also encourage you to learn that you are not alone, not today, not ever.

Discover from a fellow sojourner, her most meaningful and encouraging moments to encourage you or your loved one battling a serious illness.  Find in one handy eBook (available in 9 different formats) the best blogs updated from this site plus several Bonus Pages too!  Click on the link below for more information.  Take care,  :J

Hope Beyond Lyme:  The First Year

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

Hell on Earth

I was reminded listening to the words of a friend the other day that not everyone believes that there is both a heaven and a hell.  Funny how choosing to believe something doesn’t exist, does not mean that it in fact does not exist!  If the source for ultimate truth is the Bible, the very representation of God Himself, then this is the place for us to turn on such matters.  Since I am not a Bible scholar, I will enlist the help of Hank Haanagraf from the Christian Research Institute to shed a little light on the subject:

 First, Christ, the Creator of the cosmos, clearly communicated hell’s irrevocable reality. In fact, He spent more time talking about hell than He did about heaven. In the Sermon on the Mount (Matt. 5–7), He explicitly warned His followers more than a half-dozen times about the dangers that lead to hell. In the Olivet Discourse (Matt. 24–25), He repeatedly told His followers of the judgment to come. In His famous story of the Rich Man and Lazarus (Luke 16), He graphically portrayed the finality of eternal torment in hell.

Furthermore, the concept of choice demands that we believe in hell. Without hell, there is no choice. Without choice, heaven would not be heaven; heaven would be hell. The righteous would inherit a counterfeit heaven, and the unrighteous would be incarcerated in heaven against their wills, which would be a torture worse than hell. Imagine spending a lifetime voluntarily distanced from God only to find yourself involuntarily dragged into His loving presence for all eternity. The alternative to hell would be worse than hell itself in that humans made in the image of God would be stripped of freedom and forced to worship God against their will.

Finally, common sense regarding justice dictates that there must be a hell. Without hell, the wrongs of Hitler’s Holocaust would never be righted. Justice would be impugned if, after slaughtering six million Jews, Hitler merely died in the arms of his mistress with no eternal consequences. The ancients knew better than to think such a thing.  [“Ask Hank” column of the Christian Research Journal, volume 27, number 1 (2004)]

We read that in hell there will be darkness, eternal separation from God, unquenchable fire, weeping and gnashing of teeth.  For all of eternity, a person will never be able to get comfortable or find relief.  Wow.  All this for turning one’s back on the God of the universe who created each one of us, loves us unconditionally, promises to never leave us or forsake us . . . if we but repent and believe in Him.  A reasonable choice I would say given the rewards, given the consequences for not doing so!  I opt for the eternal party in heaven with streets of gold and the mansion with many rooms He is now preparing for His own.  I trust that many Gentle Readers of this blog have made the same decision for Christ as Lord and Savior.

In the meantime, believers and non-believers alike must live in a fallen world where Satan rules, not God.  What?  Surely God is here, dwells in the hearts of those who love Him, reveals Himself through the wonder of nature and the blessings He bestows upon us, right?  Yes He does.  He will not rule, however, until He comes again in glory at His second coming.  Until then, we must face the consequences of sin and everything short of the Garden of Eden.  At times and increasingly in the world in which we live, we see evil and darkness.  Increasingly we see and experience what we might call “hell on earth.”  Perhaps you have tasted this yourself.  I know I have many times . . . my personal hell plays out every day as I battle a serious illness.  Wretched, man.

If you want to make sure you don’t end up in hell, well then I invite you to get connected to the Lord, Jesus Christ personally.  While there are no guarantees that you will not suffer in this life, you are guaranteed that you will live gloriously in heaven with your Heavenly Father and believers who have gone before you . . . FOREVER.  Now that’s a guarantee that pulls me through any glimpse of hell on earth these days.

All of this is good to reflect on and get straight right before Christmas.  After all, the holiday traditions will fade.  Christmas presents will break down someday and the fruitcake will live on beyond most of us in a garbage dump somewhere!  But even fruitcake will turn to dust eventually.  And when it does I know where I will be.   I will no longer have seizures, chronic illness, and chronic pain.  Everything will be perfect.  (Happy sigh.)

How about you?