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

 

Lift me up my Lord

Psalm-23 4

Lift me up my Lord, my King!

Don’t leave me here alone forgone

I am dying inside as one they have abandoned

Despite my attempts to serve, to obey, decaying inside all the while.

There is no reserve

To bring to life anymore

The light left me long ago when wretched darkness

Became the friend I never wanted and never invited to stay.

The desperation drips with tears

The emptiness has no where left for an infill

The days blur meaninglessly from one to the next

The prayers still go unanswered by the God who has always known best.

Grant me some goodness

Oh Lord of my heart, my King

I’m drowning here with no-nowhere left

To Google, to turn, to ask, to keep me going ’til the day You will speak.

Have I not done the things that are set

The ones I thought you showed me to do?

Yet the suffering ramps louder than my screams with each seize

Take me from this hell please oh Master of my heart.  Isn’t it my time?

waiting, wanting, scripture, Bible, patience, trust, suffering, His will

Humbly, I will wait.  JJ