Little blue booties ring true

The little reminders that things are going to be o.k., that the Lord is in charge, and that you have all you need are quite an encouragement to me today.  I am seeing this more clearly as my head clears after a whirlwind “Plan B” long weekend.

We never made it to Branson, Missouri for the celebration of my Other Mom’s (aka mother-in-law’s) 80th birthday celebration.  Family was scheduled to land there from 4 States for a long weekend including the 4th of July.  My Other Dad (aka father-in-law) had an acute worsening of multiple joint pain and was unable to drive the two of them cross-country from California to Missouri so we made the decision to do what was best:  cancel and reschedule the trip for the Fall.  We all scrambled to cancel various reservations made for camping, cabins, the Dixie Stampede show, watering of the garden in our absence, etc.  Then this wifey-poo decided she still needed to get away . . .

Meanwhile, my life continues to be dominated by the treatment of chronic Lyme disease, a serious fungal co-infection (protomyxzoa rheumatica), and the complicated detox/supplement regimes that go with it.  While I am grateful for a solid treatment plan, the making of our home into a hospital plus the tangible reminders at home of thousands of hellish convulsive episodes begs for a change of scenery when possible.  Sure looked like the enormous effort to get away was going to be worth a bit ‘o respite from all of those reminders.  I reacted selfishly when everything changed.  I was more crushed for my own sorry lot than my mother-in-laws cancelled family gathering, big birthday celebration.  Maybe I need less of “poor me baby,” sentiment, eh?

Steve and I thought through our options.  We had cancelled supporting a paddling race in a town about 100 miles away since we were going to be gone so we re-volunteered to help out and bring our Stellar kayak display.  But travelling a total of 200 miles plus standing out in the hot sun all day recording race times and hosting Steve’s booth seemed a bit much after 3 straight days of IV antibiotics.  So what about camping afterwards?  In the end we worked into the wee hours of the morning the night before the race to make Plan B a reality!

  • Supporting the race.
  • Finishing up all shopping plus cooking within a day for my special diet.
  • Making new reservations to camp in 2 places over a holiday weekend beginning north of the race and en-route to a new destination.
  • Continue north to Silver Lake Dunes and the campground adjacent to a Christian camp where a young couple we know has worked for about 7 years.
  • Return home after the 4th of July for Steve to return to work, allowing him to finish some important training and projects that we would have missed had we gone to Branson.
  • Resume treatment at home after a 5-day break.
  • Commence about 8 loads of laundry, post-camping melee, etc. too!

So with a tremendous effort, the ebb-n-flow of violent reactive episodes that followed being off of my treatment schedule, and some sweet memories sprinkled therein we had a decent weekend overall.  At some level I exclaim:  how crazy!  And: Is it worth it?  Well my answer this time is different than in the past:  NO!  There still are too many noxious exposures from campfires in any campground to succeed at avoidance even inside a modest travel trailer.  There is always some type of breakdown that ends up stressing us out, creating conflict even nearly 5 years down the road from dealing with this serious illness.  When we got back I was ready to sell the travel trailer the Lord had provided the resources for almost 3 years ago.  What were we thinking back then anyways?  Trying to continue with a normal life was my focus then when I did not have a clear treatment plan.  Killing the beasts within me at an extraordinary cost is my focus now.  The proceeds from the sale could pay off some of our debt.  I was ready to let it go should the Lord be leading me to do so.

In a Christian marriage, the husband is the God-ordained spiritual leader of the home.  His headship is God’s design for the protection and provision of his wife and family as he follows the leading of the Lord.  I have come to trust this, be blessed as well in submitting to Steve.  As it turns out in the scenario I have shared here, Steve suggested that we wait to make a decision about the trailer until later this year.  We have a couple more trips planned and it is clear that he wants me with him on all of them.  How sweet!  His love is amazing.  We will make some further adjustments in how we handle things next time and hope that I will be doing better as my treatment progresses; going with a partial treatment holiday could work out better for travelling than dropping everything, Lord willing!

Oh did I mention the blue footies yet?  I bought a large box of disposable medical shoe coverings in anticipation of developing a new product this past Spring.  (I could earn some money to pay for the development of my real invention by my company, Two Step Solutions, Inc.)  Attaching a Swiffer-style duster with Velcro to the bottom of a disposable slipper makes a great foot-broom for dusting wood floors.  This saves a lot of time and effort as compared to other cleaning methods, IMHO!  Then when I continued to have difficulty functioning, the idea got shelved instead of developed.  Dang!  Flash forward 2 months later and those cute booties are part of the garments I ask my home health nurse to wear to avoid chemical/dust exposures when administering my IV antibiotics three times per week.  Works great!  And in thinking through all of this today I am reminded of these truths:

John 16:33 New International Version (NIV)

33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”

Matthew 6:25-27 New International Version (NIV)

25 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? 26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27 Can any one of you by worrying add a single hour to your life?

My Heavenly Father and Husband is so good to me.  He loves me so and I get to feel it everyday in the arms of my beloved Stevers.  The Lord is there in times of wretchedness, times of joy . . . none of it will be wasted as He leads me home to dwell in the heavenly mansion of many rooms, near the river of Life, with the saints who have gone before me sheltered in His majesty beyond imagination.  Thank you Lord that you sprinkle some of that goodness into my days to encourage me, to encourage my beloved.  Thank you for caring about all the details of our lives.  I submit them to You.  We will wait upon the Lord, Jesus Christ, until You walk us home to sit at Your feet in awe and wonder of all that has gone before us:  from blue booties to a lighthouse along the shore.

This rings true above all else:  You are so good to me.  Thank you Lord.

Dunes Harbor, Sleeping Bear Dunes, lighthouse, just julie writes, Julie Horney
Kayaking at Lighthouse Beach along Silver Lake Dunes

 

 

 

Anticipation

One could say that the days before a cross-country trip are usually filled with a multitude of tasks and anticipation of the good times to come.  I’ll give a “yes” to both accounts and now we are back from coastal Alabama with pictures to share.

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Paddling the Stellar S16S felt good in Perdido Bay off Alabama/Florida waters
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Steve and I congratulated Elizabeth and her husband Daniel as she earned her wings to become an Army Blackhawk helicopter pilot

 

 

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Our happy travelling companion Elle
helicopter, flight, pilot, family day, Army, ride, flight, school
Elizabeth piloted a helicopter ride for each of us after graduation. Awesome!

I did a lot better travelling this past week than our last trip in November of 2015, that is for sure.  I was able to attend all but one planned activity by pacing myself, meticulous planning, and some improvement in my overall health.  The convulsive episodes that still accompany the serious illness I am battling kept themselves largely to the overnight hours and travelling in my truck.  And they were much less!  Yeah God!  It’s amazing how much life can fit in between the setbacks these days . . .

Now that 11 loads of laundry are done, the travel trailer and vehicles are cleaned, and even some garden chores completed I am ready.  A nasty new treatment begins later this week.  Resuming the infusions of IV antibiotics, a few scheduled appointments, grocery shopping, and making sure our support systems are in place come first before the darkness falls.  It really could be that bad.  Or maybe not?

They say that breaking up stealth biofilm and killing protomyxzoa rheumatica (formerly known as FL1953) can render a person useless.  Or bedridden.  Or really, really sick.  Then after around 4 weeks, there can be miraculous improvement.  My trial run 2 weeks ago of 1 capsule of the anti-fungal brought dizziness, light-headedness, and cognitive slowing.  My Lyme Literate Medical Doctor was thrilled when I told him.  (He is kind of kooky that way!)  “It’s affecting your brain!  That is good!” he exclaimed in a way that only a master diagnostician can.  Oh boy.  “I wonder what the full dosing will be like?” was all I could think about.  And how will I eat?  Get to the bathroom?  Keep up with all of the treatments while home alone when Steve is at work?  So many questions remain unanswered at this point.

This is what I know for sure.  In a way, the break in treatment for a week of vacation came too soon.  I was not ready to go without the IV antibiotics and daily routine that has facilitated this turnaround without some extra struggle.  There was a lot of stress amidst the good times.  In another way, the break fed my soul!  I got to see what living was like for everyone else while being with everyone else.  I got to kayak with my beloved River Bear . . . . TWICE!  I did more than one thing each day and did alright trying to do so.  When we got back home I got to work in our garden two days in a row.  Wow, Lord.  Then I read an adventure novel in 2 days!  How lovely it was to immerse myself in a bit of life again.

So for the unknown treatment coming in a few days I will say this:  bring it.  I have faced worse than lumbrokinase and prescription Lamisil.  I will go slow if I can and employ every herxheimer (aka die off) remedy I have in my arsenal if needed.  The Lord has brought me through near-death experiences, daily hell on earth, despair beyond belief.  I have been given a taste of life again to encourage me and those around me as well.  It is time to dig a little deeper, literally.  We have found The Beast in the recesses of my brain tissue.  This is war.  Lord willing, I am going to get well.

If we don’t chat for awhile, please pray for me and Steve, k?  Thanks a bunch Gentle Reader.  I am grateful for you.  With love, JJ

Julie BH Crop

One order of gratitude coming right up!

DSCF7927You all who are healthy out there listen up:  you got it good!

I finally had an evening that was nearly normal for most of it and it was indeed good!  Celebrating the wedding of the son of some friends of ours seems like an ordinary part of life to most of us.  The story went  like this:

We met our friends’ kid as a teenager, he fell in love and 3 years later, we were invited to a magnificent wedding banquet in the quaint Heritage Barn out in the country!  My husband Steve and I gratefully got one of the few invitations to the wedding.  We enjoyed holding hands together during the ceremony, gazing deeply into each other’s eyes from time to time while reminiscing own wedding vows not too long ago.  Shortly thereafter we were seated at our assigned place setting in the adjacent hall; a lovely table arrangement of hydrangeas nearly blocked the view of the other guests yet set the stage for a candlelit dinner as night fell softly outside.  The food was delicious and probably even tasted better because of the 3 -piece string ensemble filling the air with classical genre fit for a king.  The newlyweds smooched with a ring of a cow bell and as the mother of the groom squirmed.  All was well with the world.   White-on-white flowered wedding cake followed for the guests in the dance hall, followed by traditional ballroom dancing and some rip-roaring square dancing too!  The building was a refurbished barn so ’tis fitting to end the magical evening with barn dancing for young and old alike.   The couple later departed through a canopy of floating rose petals then drove off in a “smart car” just large enough to contain her wedding gown!  The night ended as the full moon shined through the thin cloud cover of the crisp evening sky.  Congratulations Brock and Hannah!  Your new life together has begun.

On the way home I realized that only once during the entire ceremony and reception was I aware that I am battling a devastating disease that could take years to beat.  Only for a moment did I wonder if I would find anything to eat from the dinner buffet that would match my Candida Diet requirements; the al dante’ green beans and baked chicken breasts would satisfy my hunger just fine.  Only once did I leave the dance hall to retreat to the stone fire circle where a bonfire covered me with as much warmth as my coat might have but it was in the car parked somewhere in the field beyond.  Only once did I wonder if the music was too loud for me only to realize that I would not be having seizure attacks upon returning to the car at the end of the evening.  The usual noxious after-affects of too much sensory stimulation, having not enough food that I could eat, smoke from the bonfire, sitting in an old restored building, and being out late would not bother me very much at all.

Wow.  You who are healthy and never think about such things got it good!  And tonight, so did I!

Thank you Jesus for an edifying wedding ceremony that focused as much on your sacrifice and saving grace as the wedding nuptials of two of your precious children.  Thank you Lord for working out so many details through the work of so many people and your Holy Spirit to bring such a lovely wedding ceremony together for all of us to enjoy.  Thank you my Jesus for allowing me to experience the wonderful fellowship of our friends in Christ as we celebrated this wedding tonight.  I am humbled and grateful for this afternoon and evening.   This taste of goodness reminds me of Your goodness.  It was and is just the right encouragement I need to keep going when the times are more difficult.  For your glory and in Your name I pray.  Amen.

And then there was a better night

Unbelievable!  To fall asleep without being tazored by seizure attacks.  To wake up without over 15 minutes of tazoring.  To start the day with just a trace of a headache.  To get outside and work in my garden in the morning!  To be looking forward to an afternoon nap in anticipation of a gathering with some friends at the home of one of them on a lake.  For this to come together on a beautiful day.

Yes, praise be to the Lord.  The last 12 hours have been relatively great.  Thank you Jesus!