I long for you

My intended beloved, oh man of my longing

How is it that these things come between you and me?

I lie next to your warmth, oh so ready to imbibe

Til the horror of illness keeps me far, far away once more.

Albeit evil it must be:  a test for my weary, so weary heart

You know my lord and my Lord that I do shake with grief so!

Perhaps just for a time, please wait for me love

I shall return soon when illness has gone one day, I promise, I do.

Until then know that you are the one for whom that my heart sings

The one who loves me so, beyond that which I can even wanton,

My knight in shining aluminum, we jest, but you are indeed more

And know me well, I love you too . . . this is all I need to know to live.

Our Jesus is out in front of us two leading us on

When darkness comes, oh here it is again, we shall not be moved;

Hold me as you are able or as my frame lets you in

Forever in my heart you know you will for always be with  me.

Solomon, 3:4, Christian, marriage, trials, chronic illness, sickness, intimacy, sexuality, wife, husband, Lyme, seizures

Just short of maximum destruction

monster truck, women, riding, Maximum Destruction, celebrate, ride a truck

That’s me with my brother’s girlfriend catching a ride on a Saturday night as I waved to my husband from the Monster Truck ride at the Maximum Destruction show.  Although I had never ridden in a jacked-up truck before, the figure-8 track of an auto raceway not far from the Motor City is nothing new for me.  I grew up hollering and hooting during demolishion derbies on hot summer weekends in the Detroit area where I grew up.  Virtually everyone in my family worked in the auto industry, the men in my family all tinkered with their cars, and my Dad founded a company that produced the fastest slot car motors on the tracks in the 1960’s.  It seems so long ago yet the adrenaline is so easy to tap into when I hear those engines get revved up!

The racing was exciting!  The effect it had on me was not-so-much exciting as it jittered my fragile nerves.  We did make it all the way through to the trailer races on the figure-8 track at the end of the night:  battered vehicles of all types pulling various types of 2-wheeled trailers for about 10 laps around the track.  The smash-ups drew roars from the crowd and the buggy towing the large teddy bear in a row boat took home the trophy that night.  I was exhausted as my own River Bear drove us home into the wee hours of the morning back across the State lines to Indiana.  What a crazy night!

I am not sure if it was all of the smoke that seeped through my charcoal mask, the vibration of the roaring engines, sitting on those damp wooden bleacher seats, or what exactly affected me the most on Sunday.  I sure slept a lot!  Certainly any of it would have kept me home just 1 year ago.  I am doing better in many ways.  But today brought another bad convulsive episode that seems to be happening again about every other day now.  We are puzzled; I am discouraged.  The healing from the specialized dental appliances and upper cervical chiropractic care appeared to be helping to decrease my reactivity, normalize my sleep/wake cycle, increase my activity level, and overall decrease the episodes.  There were at least 2 days per week when I had no seizure attacks at all!  And now they are back.

The only possibility we can think of right now, after nearly 7 years of serious illness and more medical care than you can imagine is a hidden issue in my cervical spine.  Cervical vascular disease can give rise to traditional seizures but more in the acute phase of these issues than in a chronic phase.  When neck extension can trigger them and the episodes can include a near paralysis of one side of my body then I start to think there is more going on than some pinched cranial nerves.  Have the dental appliances reduced my symptoms 80%?  Yes, until now, they have yet I still deal with the remaining 20% every day.  Chiropractic adjustments and physical therapy  have both triggered and resolved an onset of episodes.

My medical doctor took some convincing then ordered the first of a couple of diagnostic tests after realizing that I have a family history of carotid artery  and heart disease.  I was at the race this weekend with my brother who had a devastating stroke 4 years ago due to occlusion of his carotid arteries.  For me, initial testing shows that my carotid artery is fine; it is the vertebral artery that could be most suspect as it travels around the first cervical vertebrae called the atlas.  More testing should clarify what is going on.  I often have instability or rotation at the level of  C1.  It doesn’t move correctly during flexion or extension according to specialized cervical xrays.  We have got to figure out what is going in these structures in my neck!

Today and some other days recently, Steve providing simple distraction technique of my neck eventually resolved my worst symptoms during a bad episode.  Extreme fatigue follows with an emotional release of frustration, despondency, exasperation, grief, and sorrow.  This has just been going on for so very long!  I am amazed that all of the massively destructive movement patterns occurring thousands of times day after day for years has not caused more damage to my weary frame.  This finding actually gives me hope — that if the episodes stop then maybe I can regain some physical health and fitness with with what is left of me, with the body my Lord has entrusted to my care.  Even those beat-up sedans, pick-up trucks, and other stock cars on the race track somehow keep going to win races week after week.  Just tune ’em up, sure-up the quarter panels-n-bumpers, and onto the track they line up to race another day.

Perhaps that will be me at some level too in my race called “life.”  Only I think I’ll add a little more bling to my frame than the lipstick ladies did to their jalopies during the first heat this past Saturday night.  I might even spruce up the “paint job” on my hair color too.  Next weekend (or hopefully one day soon) just might be my night to shine when the official waves the green flag to get up and go.  Surely that will be a prize worth waiting for . . . just short of the ultimate finish line in heaven.  Yes my Lord, I’m ready!

JJ

Hebrews, 12:1, run, the race, with endurance, Bible verse, race of life

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

The beat goes on

Looking for some meaning in this holding pattern of life

I find only the dings along the bottom of the barrel, cold and damp.

Went on a little adventure with my love only to land in a world of hurt

The ghastly symptoms embarrass me in front of a friend not yet known.

I really try to find a way out of this hell, I really do

With answers only to wait, check this, measure that as it is not time yet.

If only I had the eternal eyes of my Savior perhaps the angst would be less

The long naps on a sunny day awakened with distress of illness would be no bother.

“When?” would be replaced with patience, “why?” with simple faith and trust,

Pain with appreciation of endurance granted only by my dearest Lord.

Hold me now as it is too late for my strength to carry me any more

As this heart ticks off more moments, let me know that with You I will go on . . .

 

Goodness & Light

 

goodness and light, Christian, Christmas, song, Jesus, hope, humility
Photo from:  https://www.yourhomebasedmom.com/2013-word-of-the-year/

The house on a hill

The one with some land

Just can’t be true

In life without an ampersand.

It’s more like the fermata

In a musical score

Or the final bar line

Where dreams are no more.

You must look around

To the good in your midst

And find the blessings right there

Embrace them with a kiss.

First it’s my beloved

My treasure beyond compare

Next it’s my safe dwelling

The gardens, the love all in there.

Deeper still is my eternal love

The One Who carries me through

The hell of this Earth

Nothing compares to You.

Your light fills my life

No matter how it feels

With hope beyond compare

A shining city on a hill.

What more could I want

When in forever all will be well

Sing alms to my Lord now

This is a story for now, all to tell.

Goodness and light

Lightness and the good

Oh come Lord, Jesus soon

I need you to soften my brood.

Push my focus out to His love

And all comes back and it is right

His Word shines through darkness

As in the day I shall walk in the night.