The Sauna I Once Loved

Like an old lover that must fade into the background of new life

My sauna must go forth to its new owner, leaving me FIR behind.

She needs it to arrest the cancer in her own body and that of her Mom,

Imagine that: a generational curse that threatens the life between them.

I am happy to pass to them this box of promise, of hope

Bringing them much relief as the toxins melt away with the wavelengths of light.

As for me I am melancholy this day, this night

For I thought I would fare better for the investment therein.

The last of my inheritance was spent the year the Sunlighten entered our home

Hopeful with the promise of a cure from what all ailed me at the time: at first, it was great.

The warmth was undeniable especially on cold Indiana nights

When nothing else would do . . . no nothing else at all.

But did it help purge the alleged chronic Lyme embedded deep within

The bacterium, the viruses, the fungal creatures claimed on imperfect tests?

I may never know as the onslaught hath continued from the rigors of this life

From living in a fallen world hell-bent on our demise, our redemption one day for us all.

Just don’t see how this tool that I once loved, held so much promise

Is worth holding onto longer when all it collects is dust in our living room now.

So onto the next thing I shall be: from the consult of last week to the specialist to come

When in the meantime I know it’s the Lord that is my Great Physician and yours:

The object of my greatest love indeed.

SOLD!!!

Prayer Request

Gathering medical records and other documents, making travel arrangements that accommodate my sensitivities, and putting together a timeline of the serious illness I have been battling for 8 1/2 years has been an emotional process for me. Just surviving to this day has been a traumatic experience. The blessings are there too yet not as clear right now with the hundreds of sheets of medical records behind me as I type this post.

I have endured so many dead ends and dashed dreams for recovery, physical damage from thousands of convulsive episodes, tens and tens of thousands of out-of-pocket expenses, and so many losses on every front of our lives. One truth is clear that I would not have survived this far without my faith in our Lord, Jesus Christ. He was my Rock when my breathing would not start in the darkness of night or my legs would not move to get me to the bathroom. Both my beloved Steve and my Lord carried me through it all to this moment in time.

Regardless of what has gone before us, Steve and I are pressing forward, hopeful for a good result at an upcoming consultation at the Mayo Clinic. For the first time since the onset of this serious illness, I get to see one of the top Doctors in neuroimmunology at THE top medical facility in the country. That is humbling. I am grateful.

Now is the time to pray for a cure to the daily convulsive episodes. Lord willing, I will be well! Thank you for your love and support, Gentle Reader. Love to you, JJ

Countdown to Mayo

I’m kind of freaking out over here. No really. You would think I was preparing to go for the biggest medical evaluation of these 8 1/2 years battling a serious illness, or something. Well maybe I am!

The little city that comprises Mayo Clinic: most buildings and surrounding businesses are connected via the underground Subway Level. You may never have to go outside in the cold!

Some of my medical conditions have flared a bit lately, requiring medication and distracting me from my primary goal at the moment: preparing for a consultation at the famous Mayo Clinic. I have SIX medical appointments this week alone, FOUR next week! Gratefully, the locations of these appointments have put me in the proximity of places from which I need to gather medical records; one of them proved to be timely in addressing the flare-up of an acute, stress-related condition: shingles! Thank the Lord I caught that one early! Ugh. And just about everything related to my care will have been updated by the time we leave for Rochester, Minnesota: the biggest snow belt of the United States of America! Not that I am stressing over that one as well? Maybe so.

My beloved is both helping and complicating the process with his energetic ideas, last-minute plans, and on again/off again pursuit of a better, new-used truck. Turns out we are letting the last one go for now. Yay! There are always extra expenses and things to do when you make a major purchase. Now is not the best time for us to buy a truck! We really need to think through this purchase a little more, focus on our trip to the “Mayos,” and get some other proverbial ducks in a row. Steve will still be off working hard and doing his various activities in the meantime before we leave . . . seeya for dinner or at bedtime when you return home my love. (Yes, we still have a very late household.)

What’s left to do:

  • Receive the medical records from the Doctor and 2 hospitals I have visited the most.
  • Organize and condense hundreds of pages of test results into about 50 pages, labeled in some meaningful way.
  • Confirm arrangements with the hotel who promises NOT to use fragranced products in our room prior to our arrival. So bummed that an Airnb didn’t work out nor the Serenity House Network.
  • Pack WARM clothing, dog food, new dog medications, numerous supplements and medications for me, and enough food to get us through the first few days in the northern tundra. Gratefully our hotel room will have a kitchenette; it’s too frigid for our usual mode of camping via our “mobile clean room.” Most important on the packing list of my beloved: cross-country skis! I may take my snowshoes as well.
  • All the other stuff you do when away from home like laundry, placing he mail on hold, watching the weather here to have the snow shoveled when we are away, watching the weather there to confirm suitable road conditions, and the like. Should be less work than camping for sure!

While this process is exceedingly stressful when still battling a serious illness with bad convulsive episodes virtually every day, I am exceedingly grateful for the opportunity to got to the Mayo Clinic. Thank you Lord! It’s rated the best hospital in America! The top Doctors in the area of autoimmunity and neuroimmunology conduct research and see patients at the Mayo Clinic in Rochester. I have heard first-hand from some of my new Doctor’s patients and they state that he provides excellent care. Yay!

I am also glad that I did not go the Mayos 3 years ago when I was looking for new answers to troubling medical questions. Since then, we have further tested and treated for Chronic Lyme disease, lowered my burden of heavy metals, healed from various dental procedures and treatments, investigated numerous other potential infections, addressed/ongoing orthopedic issues, completed a comprehensive cardiac work-up, and even received genetic testing and coaching. It’s been a busy 3 years! All of these conditions could have explained this horrible illness but they did not. Good news: I can now tolerate more of the supplements and medications that are needed to re-build my health (which was impossible to do without triggering convulsive episodes in the past).

My prayer has always been that something of value would come from over 8 years of daily struggle. The Lord has been faithful to see us through even the darkest hours where demonic influences were palpable, suffering greater than I can even describe. Both Steve and I have been tested beyond what we thought we could ever bear yet the Lord has met us, sustained us, even carried us. There were sweet moments along the way that served to encourage us. We understand that others have been encouraged by our testimony as well. Yay God! Overall, these past 3 years preparing to go to the Mayo Clinic certainly were not wasted, that is for sure. It’s time to rally for a cure.

Let’s hope so, eh Gentle Reader? We are hopeful again! JJ

A Plausible Case

As you may have read in the About Julie page of this blogsite, I treated for Chronic Lyme Disease early in the four years that I have been battling serious illness.  I had not recovered my health four months after a bout with viral hepatitis and our Family Practice Physician convinced me and Steve that latent Lyme disease was keeping me sick.  Then the story changed a few times . . .

Treatment for Lyme disease, Candida, mold exposure, mercury toxicity, gut parasites, and infected root-canaled teeth has still left me with the following symptoms four years later:

  • Hours of daily convulsive episodes, every single day
  • Headaches
  • Painful shoulders, forearms, hips, neck, jaw, and more
  • Ringing in my ears
  • Multiple severe chemical, mold, and sound/light sensitivities
  • Significant nutritional and hormonal deficiencies
  • Fatigue
  • Episodic cognitive and emotional setbacks
  • Periodic night terrors, nightmares, waking terrors
  • Weakness and deconditioning
  • Air hunger and chest compression symptoms
  • Neuropathies
  • Severely disrupted sleep/wake cycle
  • Food sensitivities despite a restricted diet
  • Gut dysbiosis
  • Inability to consistently perform activities of daily living or work
  • Social isolation
  • Intolerance to treatment

So in other words, my life is kinda hellish a lot of the time!  Today was no exception.  Then right in the middle of the trauma there were tender encounters with the sweetest man on the face of the earth:  my Stevers.  We talked in between seizure attack episodes, he provided care when I could not move, and we made the most of a low-key day.  It was the “same story, different day” around here.  And something else happened too:  I may have discovered another piece of this wretched illness mystery:  Latent Lyme Disease can affect the gut which in turn can contribute to neurological complications much like the ones that have eluded all of our attempts at recovery.

No, it’s not systemic Candida as I suspected when I wrote my last Treatment Update.  It’s called “Bell’s Palsy of the Gut,” a term coined by Lyme Literate Medical Doctor (LLMD) Virginia T. Sherr.  “Gastrointestinal Lyme disease may cause gut paralysis and a wide range of diverse GI symptoms with the underlying etiology likewise missed by physicians,” states Dr. Sherr in the April 2006 issue of Practical Gastroenterology (p. 74).  There are tests that can be performed to determine the presence of Borrelia burgdorferi along with other microbial pathogens  transferred in tick saliva after a bite.  In two weeks I will have a diagnostic procedure in which these tests could also be performed.  Whoa Lord.  Is that why I felt led to add an anti-microbial to my anemic treatment plan?

God is good.  All the time.  God is good.  Today I felt led to add back a probiotic that I actually was able to tolerate this time.  The new information about Lyme disease may explain the increasing gut inflammation this past year and my supremely negative response to a trial of a far-infrared light treatment to my abdomen.  Or to any abdominal exam.  Or to physical therapy to the hip flexors in the lower part of the abdominal wall.  Or to certain foods.  At any rate, a new door has opened and there are new possibilities for getting well.  Perhaps it is time to re-visit the diagnosis of Lyme disease.

Stay tuned.  This exquisitely wild roller coaster ride of recovery from serious illness is about to reach a new station.  In the meantime, please pass a spoon and 1/2 of a carton of Siggis plain, grass-fed, organic and Icelandic yogurt.  We’re going to get this thing right or keep screaming all the way to the bottom of the next hill until we do!  (I told you that I worked in an amusement park one summer didn’t I?  Yeah, Cedar Point is really cool!)

Cedar Point gatekeeper_wallpaper

 

Obedience

Obedience is one of those words like “discipline.”  Not popular either one of them, yet both separate the whining cry babies from the mature adults amongst us.  For believers in Jesus Christ, obedience matures our faith and transforms us into the image of Christ (a work never completed during our lifetimes).  In our humanity our flesh tugs at us to rebel or be tempted in directions other than the leading of the Holy Spirit.  But by focusing on His incredible gift of grace, studying His holy Word, and submitting to the leading of the Holy Spirit we will end in a better place for sure.  I have seen it in my own life and in the lives of others.  His will is best.  His timing is best.  Why?  Because He loves us and because He is God!

These thoughts came to me after reading an interview of Ravi Zacharias in the RZIM Summer 2015 newsletter and listening to a message by Pastor Paul Mowery of Harvest Fellowship in Leo, Indiana.  At the close of his message on Romans 11, Pastor Paul encourages us to “be about worship,” praising His great name for having mercy on us as recipients of the Lord’s grace.  We are not to dwell on what each of us may have done that draws attention to ourselves.  We are to be about Him: worshipping our Father God.

Lately I am struggling with these themes.  Many of my posts here have tried to pull something meaningful out of the challenges of a wretched illness.  As the days wear on with the setbacks of late, I have found myself literally screaming out my anger at God with the wails that accompany the convulsive seizures.  “Why do you hate me?”  Oh yeah, it’s bad.  Even my beloved Steve who has been at my side during a fair amount of this hell admits his anger at God.  And we are convinced that this is an o.k. thing to do.  It is not an o.k. place to stay, however.  And it is certainly not an acceptable attitude to act upon.

You simply cannot be angry at someone whom you do not love dearly.  Such is our dilemma.  We both love the Lord, Jesus Christ, and are humbled, grateful for His mercies in each of our lives.  We have so much goodness between us!  We are grateful for so much!  And in our humanity we are broken and don’t like the brokenness.  Way down deep we are hurting and it is this hurt that fuels the anger.  Admitting this will be the way out, the way back to fellowship, the discipline that will bring obedience, the song of worship yet to come . . .

So, as the Holy Spirit says:

“Today, if you hear his voice,
    do not harden your hearts
as you did in the rebellion,
    during the time of testing in the wilderness, (Hebrews 3)

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Therefore, holy brothers and sisters, who share in the heavenly calling, fix your thoughts on Jesus, whom we acknowledge as our apostle and high priest. He was faithful to the one who appointed him, just as Moses was faithful in all God’s house. Jesus has been found worthy of greater honor than Moses, just as the builder of a house has greater honor than the house itself. For every house is built by someone, but God is the builder of everything.  (Hebrews 3)

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being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus.  (Philippians 1)

Today with the faith of a mustard seed (that I understand is rich in nutrients of which I am needing anyways!) I will choose to honor and worship the Lord, my King.  He has built this frame in which I dwell and within it dwells the Holy Spirit.  Broken or not, it is the vessel from which I will praise His name all of my days.  I lay my angst on His mighty throne of grace, with great expectation of His promise to redeem it for His glory.

obedience, endurance, waiting on the Lord, discipline, redemption, redeeming grace, redeem

May He be glorified in all.  My Jesus.  My all in all.  Worthy of our praise.  Worthy is this Lamb of God!  JJ