On the Cusp of Many Changes

Here’s a post from last week when I almost didn’t know where to put my focus at any given moment.  Maybe it’s time for a brain dump, prayer, and some quiet before the mayhem?

Inside

The bout of pneumonia is largely past now with occasional coughing spells and nasal rinses to get me through the occasional flare-ups.  Unfortunately this illness has exacerbated the seizure attacks when trying to go to sleep.  It is definitely time for an adjustment to my specialized dental appliances however the trip to go see my Craniomandibular Specialist got cancelled due to the pneumonia.  Oh well, the fact that it has been raining in Florida virtually every day for the last few weeks including a tropical storm this week makes me glad we were not camping in all that mess.  Ever camp and travel in hot, muggy, wet conditions with a large dog?  Yeah, it would have been a moldy, muddy mess for sure!

Outside

We are in the process of selling our Livin Lite Camplite 16 DB that has served us well for the past 4 years.  We very likely will need to accommodate one or more family members during some upcoming travel so we are pursuing the financing of a more suitable travel trailer.  This is a week of finalizing the sale of our “Tin Can Ranch” and the purchase of the new unit, Lord willing, requiring many tasks and 2 long days of travel:  one day this past weekend to scope out the new travel trailer and another day soon to go pick it up.  Travelling a total of 4 days to my medical appointments in Florida was out of the question yet 2 shorter trips over the period of a week was more doable yet very tiring.  No problemmo.  My beloved River Bear is a skilled “bus driver” too!   The cancellation of medical and other appointments this past week (because we were supposed to be out of town!) has allowed for plenty of time for rest-n-naps!  Hopefully the new owner of the 16 DB will be able to solve her delays soon as well.

Things got crazy when late Sunday night in the middle of the Memorial Day weekend we found the perfect travel trailer and price point for our situation!  Within 24 hours of the posting of the listing and us finding it, we were on the road and ultimately making an offer.  Do you think that the Lord cares about the special thingies of our lives?  I submit to you that He does.  The morning of Memorial Day that we were scrambling to take a day-long road trip to see the travel trailer, Steve sold a performance surf ski for his River Bear Racing!  We delivered it to a gentleman along the shores of Lake Erie then headed south to check out the new Camplite.  A week later it was in our driveway!  However, the timing of this transition has found us with TWO travel trailers, much paperwork, a couple of trips to the Bureau of Motor Vehicles, yada, yada, yada.   We are a little nervous but trusting the Lord that things will also be resolved in time for our first camping trip in June . . .

Family

Looks like my family member in Florida will be visiting us for most of the month of July.  It’s still a month away yet many travel arrangements and accommodations are needed to both get her here and have her in our home.  Steve and I still must practice extreme avoidance procedures (changing clothes and showering when coming home from being away) which is tough on an older family member who needs care.  We will make as many preparations as we can before she leaves her home (in a moldy State), have initial provisions for her when she arrives, and hope for the best that her clothing can be sanitized and de-fragranced so she can travel and visit with us in July.  She has many fears, concerns, demands, yet is asking to come.  That is kind of weird since she has traveled with virtually no care just a few months ago and did alright.  So I will be very busy taking care of many details.  Thank the Lord I am less reactive to fragrance and trace amounts of mold, etc., and my activity level has increased some overall these past 2 months!

Home

Getting out in the garden continues to be a great therapy for me in many ways.  The vegetables are now in the ground including a new asparagus bed . . . until the bunnies find it of course!  No worries as I am working on my rascally rabbit defense system as we speak.  Overall I am still months ahead of schedule for Spring clean-up as compared to the past 6 years battling a serious illness.  I am humbled and grateful.  When my days in the past focused on basic household chores and a plethora of medical appointments and treatments.  Was really nice yesterday to sell a piece of medical equipment that I no longer need and then drive directly to a local nursery with the cash to purchase a lavender plant!  The rains today shall nurture the earth and my garden refuge wonderfully.  Thank you Lord for the lovely view out our windows to encourage me on my recovery journey.  You are soooooo good!

I am in awe of the overall goodness of these changes happening in our lives.  Steve an I are grateful and humbled, tired and excited, stressed and energized all at the same time.  So I’ll end with my happy place that provides refuge through it all.  (Can you find the pup in the photo?)

Thank you Lord for your blessings and goodness, love and care.  Gentle Reader:  He is so good!  JJ

Front Door 6.18

 

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

There’s no where to go but . . .

sun-breaking-through-dark-clouds-300x192

Hubby begins his flying adventure

First on the ground then looking up

To the skies, to fly through the air

My beloved wants to be there someday.

So shall I for the depths have been too long

My darkest of nights came yesterday

Trauma that comprised abuse when

Care was needed instead, oh my!

I shall consider what to do, to pray

And listen to my man and my Lord

This just cannot go on or I will not

So all things must go up from here . . .

 

Full Moon Follies

My beloved qualified as my “Night in Shining Armour” last night.  If only it were for a victorious time instead of quite the opposite . . .

One would hope that significant interventions to quiet my inner storm would start working already.  Or at least tame the tempest beast when challenges such as noxious exposures and the mysterious workings of a full  moon come along.  I have read a hundred or more testimonies of the latter:  that for persons battling chronic disease, symptoms can worsen around the time of a full moon.  Perhaps it coincides with the life cycle of various bacteria or parasites?  Who really knows?  What I do know is that the worst of everything came forth and both of us are pretty beat up today from the lack of sleep along with the emotional and physical trauma.

  • Continuous convulsive spikes of every dimension
  • Headache, joint and muscle pain, ringing in my ears, dysarthria, bradykinesia, left-sided parasthesia, hypersensitivity to sensory stimuli
  • Visual anomalies (spots of bright lights when my eyes were closed)
  • Cognitive slowing
  • Difficulty breathing and communicating
  • Incredible frustration and discouragement leading to hysterical crying and anguish
  • Neurological collapse requiring maximum assistance with feeding, toileting, and dressing
  • Eventually passing out in bed around 2:30 a.m., partially dressed with no recollection of falling asleep

The 100% THC-free CBD oil provided a temporary pause in seizure attacks as did a large dose of liposomal Biocidin.  The entire episode finally ended shortly after taking my (3rd) nightly dose of Low Dose Naltrexone.  I must add that the only positive part of this experience was when I could open my eyes and saw my hubby in his night clothes as he cared for me.  I liked that!

Please pray for us.  We are exhausted.  The demands of life go on just the same.  My MRI with NeuroQuant study our of State will be delayed due to severe weather expected tomorrow; I am hoping to reschedule the appointment for later in the week.  Let’s hope that the NeuroQuant and the updating of multiple medical tests this month will be fruitful, Lord willing.  My Jesus goes before us and sees us through it all.  I trust in His timing, His plan for our lives.  Thank you for praying.

And thank you Steve for your heroic love and care.  May the Lord carry you today.

We wait on the Lord this day and always as we try to figure this out!  This illness is killing us. JJ

Vampire Diaries 5

The night cometh calmly then burst into flames

Carrying violence within my fame rather than that intended for rest

Sleep yet so elusive:  its nemesis pushes through the darkness

Leaving me quite empty, without a trace from where it came, no rhyme or reason to blame.

How can I go on?  Asks the Benadryl box to the other remedy he found;

When will she learn to give in or give up and let the beast win whether or not I am around?

The behemoth within begs as if breathing a hell all its own into my frame

Taunting perhaps by demons, images more frightening than a horror flick not ever seen.

“None of that matters oh sweet one writhing in My care

This season shall pass, I assure you, if you but hold on one more day

For all you have is this breath and this scene set before you but

Be wise tender child for your torment shall not go unrewarded in due time.”

“But when?  But why?  Have I not earned a better place in your heart?

Have I not earned the way home sans suffering?  Is it not yet enough?”

I have no answers for you just one request my chosen child full of grace:

That you trust me beyond anything you can imagine for infinity is where I am.

I love you most in the silence, the seizing of your heart really being remade anew,

The breaths that I hold rather than you, the nightmares that will become beautiful, I promise.

And then He spoke no more.  No more salve for my breaking outer shell

I was left more alone than one can ever feel:  seeing nothing ahead but His light up ahead.

Get up and start to move was all I could do with an emptiness burdening my mind

There would be no relief this night in the realm of the world around me, all that which is seen.

The relief came in my heart as I chose to yet still believe

That my Lord still loves me and always has no matter what it seems.

The refining fire has sent grief, with tears actually covering me from being consumed

So that one day I will know all the answers that I seek, when all is revealed.

Until then, Gentle Reader, these Vampire Diaries shall end

No need to rehash the trauma in a new form for don’t you “get it” by now

Or do you?  Do you see that suffering is not the place we should ultimately land

For it is in our hearts, in our spirits that we shall one day live in a world without end.

He hath prepared a place for us in which to dwell in exquisite grandeur

No weeping, no sorrow, no gnashing of teeth nor any trials will follow you:

The pain will be over.  He will lead me in goodness this way  I do believe too.

My God hath not forsaken me but saved me no less.

There will be hope beyond the cross as He hath said.

Know that He is with us always (now and forever) so carry on my dear friend

Wait just a little longer.  Can you do that for me as I will too til the end.

Oh how I love thinking of our jubilation together that glorious day coming soon He hath said!

With love, JJ

Ecclesiastes, 3:11, beautiful, in His time, waiting on the Lord, patience, waiting, burdens, trials, God, Lord, Jesus, trust, Christian, answers