Being married to me

Must be tough being married to me

A kiss can turn into a nightmare, intimacy much worse

When the beast of illness rears its ugly head

And convulsive episodes ensue and last and last . . .

You never really know when

Some sweetness will turn to black

Your affections will turn to caretaking

Yielding another failed remedy instead of a back rub . . .

No partner by your side

Others asking about the phantom wife

Does she really exist out there somewhere

Or is it just on paper and within her cage of the home?

She cooks alright and keeps the house afloat

But complains every time you call

Of this dire affliction or that when he’s at work

Helpless, other-directed, and burdened under the strain . . .

Months turned into years

As life tried to move on so we

Try to celebrate this or that, have a nice meal

Only to have her collapse at the kitchen table again . . .

He has gotten stronger

From carrying her burdened frame

To the toilet, the bed, the couch, off the floor

Rolling her over in bed, lifting her up to drink . . .

He has had to adjust to this abnormalcy of life

Never mentioning it unless another asks

For the pain of the story isn’t worth the awkward moment

A thousand times told, untold a bit later . . .

Tis the Lord’s will

The believer in Christ must contend

Yet are we not commanded to fight

For good, for answers, for more faith when tears flow?

Altogether lovely

He remains strong

Goes to work and play

To cope with the madness . . .

She waits at home

What choice does she have?

Her calling different from his

Or is it when bound by love?

There is no right way

To navigate a life gone off the rails

Except to breathe daily in prayer

When being married to me.  JJ

Where to go from here?

More testing, more phone calls

Why did I ask for preliminary results?

Wouldn’t you knowing my next appointment was so far away?

Two hours of seizing.  Every day now.  Of course I asked!

Sigh.

Full report due next week.

The findings of acute toxoplasmosis will be clarified.

Will PCR or the summary mean more antibiotics

To challenge my innards, still reeling from IVs last year?

I cried when I should have been glad

To know there was something there after all —

The test will cost over a grand

And we have no idea what insurance will do.

So for now I wait.

The specialty lab is delivering on time

Hoping the Lab Director talks to my Doc

And none too soon . . .

Hold me Jesus.

Into the clearing

When a calming washes over me with which I am unfamiliar

I wonder if it could be here to stay?  Oh my merciful Lord, please!

The headache barely whimpers anymore and her pain cousin screams less

Making me wonder if something real is happening:  “is it live or Memorex?”

Napping fills my afternoons, pill counting still dominates my days, overnights

With fewer medical appointments I can listen to my own body better

And experiment with all that I have learned, all my Great Physician has taught.

Some little sewing projects have kept me going through this stage of recovery

I’ll share it with you if I ever get them done with scraps of stuff from here and there,

Just like life isn’t it when putting pieces together then ripping out the crooked ones?

Maybe someday it will look pretty or be useful somehow . . . until then my Maker “sows.”

What will I reap when the seizures finally stop?  Will life become filled with color and smiles?

Alas until then, Gentle One, watch this space with me for I am hopeful again, not as bad,

Yes at last, I am hopeful again.  JJ

The Boomerang Effect

The wooden angle sitting on the mantle was a souvenir/gift from the Land Down Under.

To toss it into the air and have it return in-flight to you is a skill few master.  We didn’t!

Instead we dust if off because it looks nice:  forming a paradox in design and practice with which I can relate tonight.

Here’s why.

boomerang, wooden, life, metaphor, like, things come back, return to you

A trip to our local hospital began after much preparation and somewhat tense spirit too.

Would the appointments go alright such that I could return home and rest before a party this evening?

I brought with me several “rescue remedies,” food, water, favorite medical supplies, etc.

Having my port flushed last month went reasonably well so this one today should too.

Not.

I’d been battling Small Intestinal Bacterial Overgrowth when some labs indicated liver stuff too.  My Doc was willing to order a test over the phone and both would be today.

The liver/gall bladder/pancreas ultrasound could irritate a tender tummy for awhile.

Worse came a “tic attack” with the realization that there are several tender spots.

Gratefully, recovery came quickly and I was off to the outpatient clinic for the flush.

The nurse completed everything slowly as I’d requested; my preparation was flawless too.

Can you ice your chest wall while having an ultrasound, apply numbing cream before leaving home, and finish your breakfast/morning supplements in the waiting room between appointments running only 8 minutes late too?  Sure you can!

But 8 minutes past the hour was too late.  With everything that went wrong, the process would take OVER SIX HOURS!

The nurses there are saints as they let me sit in that treatment chair forever if needed.

Something about that 1 1/2 inch needle plunging into my port never has bode well with me.  Or was it a slight change in tissue gradient from fluids and a blood thinner going in?

The procedure was completed and I thought I was going to be o.k.  Then I started shaking.

The shaking continued for over THREE HOURS!  Several convulsive spikes joined the mess.

Gratefully my beloved Stevers was able to leave work early, go home, and bring me an emergency dose of steroid medication at the hospital.  He was my hero once again.

Within 15 minutes, the episode stopped.  I lain in that recliner chair in shock for a long while.  I wept some too.

We moved to the lobby where I devoured my last bit o’ snack and began to revive.

Once home, I rallied to help Steve get out the door to the party with gifts, dish-to-pass, yada, yada, yada hoping to join him later.  Another FIVE HOURS LATER, I did.

Last year I was too sick to attend a gathering with these friends from out of town.  My beloved sent me a video back then of the kids opening their gifts.  Bittersweet.

This year I got to see most of the kids for a few minutes and all of the adults.  Twas sweet.

Another victory was being able to visit in a home with a history of mold damage.  Huge!

The First Defense Nasal Screens (See Julie’s Favorites), open windows on a cool Spring evening, and progress in reduced reactivity all appeared to help.  Thank you Lord.

My plan was to stay in the moment, just enjoying the light banter and updates from all.

No matter that no one asked me much about things.  I love them in Christ just the same.

So I live a Boomerang life, moving from wretchedness to sweetness often within hours.

I could brood the day long or keep my pretty tops sitting in a closet like that dusted toy.

Instead if my Lord grants the where-with-all to get back into life, moving ahead, slightly forward,

I will trust in His strength.  I will do it.  I will get there.  And like the boomerang thing, the trip back will cancel the trip out that maybe wasn’t so good.

For we will face trials in this life, those of us who believe in Christ Jesus. The real question remains:

Will we stay on the shelf when the flippin’ craziness is done?  Nope.  Not me.

I will get out and try to have some fun!

Bumbling Along

The days are meaningless yet pass anyways

Wanton for a focus, a point, a reason why

So I wander through the rooms, this one and that

Waiting for my moment to arrive:  today or the next?

Ever seeking for answers over here, over there

That email tells me, “watch this!” for new keys

I don’t think anyone really knows how to help me

Sans my Heavenly Father who ordained this journey.

I trust my Lord who sustains me no matter

The segways that come again, again, again

Each one a little different so mindful I must be

Lest I miss the point of this seemingly wretched tragedy.

Pray tell the suffering goes on and on for years

Yet somehow I am not the same for having hung on

My needs provided for with a few wants in there too

Just gotta find some things to hold onto while I dwell in limbo.

For wherever we are going, my Lord Jesus and me

Will be worth it when I am with him always with no more weeping,

Maybe a blessing will come for being faithful or who really knows?

Only in His strength will goodness come as I bumble along til one day I am finally free.

sigh.

Until then, hang in there Gentle Reader.  And do take care, k?  JJ