One more time

A new specialist, a new gathering of papers

This is getting old already . . . not to mention the seizure attacks around 11:00 pm last night. Or is it still tonight? I digress.

A different role, a place all too familiar

As the rest of our lives carry on with big news: hubby passed his FAA oral and flight exams! Just like that I am the wife of a pilot, again!

Alas the doldrums of daily routines still carry on

Finally getting to work in my own garden late tonight after devoting much of this past season to a community park and much of this weekend recovering from another setback, ugh. The blackberries are no more. Elderberries are up next!

It was 8 years ago that I got sick just 5 days after buying my first truck

Now it’s a few weeks after an upgrade in same . . . does this mean that I will get well and drive off with my beloved into the sunset? Oh how I can dream, right? That we did the right thing too.

One more time things come around again but really are not the same

For we can never go back only forward as each breath moves us on. I guess we want to be who we are now with the romanticized memories of what we once knew: the fullness of our present with the innocence and perhaps mistakes erased from our past? Yeah, just let it go.

Look to our Lord and His return to make things alright my Gentle Friend

He will return in glory, in judgement, in power, and the makings of everything better forever good. The best part: TIME will no longer be our measure but only to dwell . . . lain in the rapture of ultimate love for always.

Sounds wonderful to me. Do you know Him too? Oh I pray that you do and you will be there with me when the stuff of life moves on for good. May this music minister to your soul as we wander towards our heavenly home. JJ

Anticipation

The plans are set, the slow ramp up has begun

The research behind me the appeal for support made clear

Now to endure the daily wrath before newness may settle in.

Another new treatment, oh help me make it to then Lord!

So much at stake if we do not win

This horrific battle of which I have hated so very much.

One thing is clear:  Who holds the future:

My Lord, my King in Whom I trust

Surely He grieves my suffering and waits with us.

My beloved is tired from the journey . . . so very loooong

Mere moments of goodness, many hours of strife

And yet he loves me just the same.

I am humbled.

Perhaps some goodness will come soon?

sunrise, path, beach, anticipation, waiting, tomorrow, sunset, summer

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

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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