The things we do for some sun

We’re home from our whirlwind trip to Florida that almost didn’t happen so soon after being diagnosed with new gut issues then battling the flu followed by it’s aftermath for 2 weeks thereafter. We did it anyways! Four long days of driving for 3 days in the Sunshine State. Here was our itinerary:

4:00 pm January 9th decide to pursue reservations and plans to go to Florida; finish seemingly endless packing, food and other preparations.

2:00 pm January 10th: Elle pup is the first in the truck as we depart Huntertown, IN for the campground south of Atlanta. Arrive around 2:00 am.

1:00 pm January 11th depart for Seminole, Florida. Arrive around Midnight. Set up our campsite at Bickers RV Park.

My mobile clean room amidst the palm trees!

9:00 am January 12th was Steve’s first day of the USCA Annual Meeting. I rested from various convulsive episodes en route and travelling.

6:00 pm we make our way to the banquet at a seaside restaurant. Had episodes later yet I was grateful for a dinner out with my beloved Steve.

8:30 am January 13th: Steve heads out for the wrap up of the USCA Meeting, lunch, and paddling 6-man outrigger canoes on the ocean. Great fun!

11:00 am My day begins with self care, laundry, doggie care and some time sitting outside. Some restoration begins, however convulsive episodes persist at night. Make pre-planned dinner anyways and prepare for appointment tomorrow.

10:00 am Appointment with Craniomandibular Specialist, Dr. Ralph Garcia, for adjustments to dental appliances. Begin to question where the 80% improvements of last year have gone? Drop off thank you gift to a friend, lots of driving in the Tampa area, and fit in a 45-minute walk along Clearwater Beach before returning to the campground. Even 60 degree weather could not keep us away! Episodes were discouraging to both of us later that night.

11:30 am Pack up and depart for Chattanooga, TN. Arrive after midnight. My Nissan Frontier is a workhorse yet requires stops for gas every 110 miles! Elle pup made the entire trip nicely.

1:30 pm Pack up and re-winterize Camplite for our return to freezing temps back home. Depart for Huntertown, IN by way of Nashville.

3:30 pm EST meet up with Steve’s sweet daughter, Rebekah, for early dinner. Ramp up of convulsive episode at older Thai restaurant prompted me to leave, scramble to the truck, and take some Prednisone. Episode resolved (meds prevented further episodes later on this night), so we head to Panera Bread across the street for a nice visit. Got back on the road around 6:00 pm.

3:00 am arrive home and start unhooking the travel trailer, unpacking, decontamination procedures, urgent laundry. Grateful for the ability to do all this work on a short night of sleep followed by long days of travelling. The Lord added His increase once again!

5:30 am: heading for bed with prayers of gratitude for safe travels, the Lord’s provision of this trip, some sweet moments, and fewer symptoms between us of the flu/cold that began 3 weeks ago. I’ll spend the next week cleaning the Camplite, doing laundry, restocking, and reorganizing as required when camping in our “mobile clean room.” Maybe I’ll get to finish 2 sewing projects for the bunks soon too?

How amazing it is that I got to go to Florida! “Warm sunshine” is very therapeutic as is getting a change of scenery. Yeah God! I love travelling with my Stevers. My heart is filling back up again . . .

God gave me you

Nor ordinary Christmas we had this day

Sleeping in then slowly moving into life out of necessity more than design.

Broccoli for my breakfast and handfuls of granola for my man

Brought us to our traditional reading of Isaiah before revealing our worldly gifts for I and you.

Who paddles a new long board down the hallway

But two middle-aged lovers holding onto our respective gusto of life?

A rest time had to follow for me again

Not as unusual as the waking episodes that have returned changing my hopes for the day.

Perhaps we would visit or do something fun

Yet return to my bed of sickness I did go for a most unfortunate interlude.

When your husband holds you from joy to sorrow

The same day seems surreal: later he feeds you medicine whilst you seize.

Siiiiiigh. Not that old tune returneth even today

For chronic illness ne’er takes a holiday when you want it to my dear.

This did not matter to you: your love never fades

And my greatest gift revealed its beauty the ten thousandth time: it’s you!

I could never conceive of this way that you have

To give beyond your self with a gentle spirit, still manly all the same.

You spoke only of my rest to your family on the phone

Preserving my dignity when I could barely feed myself with fingers weary from the beating moments before.

Yours is a love from the Father, the Son all in One

The kind that sustains you through trials when Jesus comes near with skin on.

He made you for me oh I am the blessed one

I pray he loves you back tenfold for the task of loving me well done today my love.

A Well Worn Path

If you travel the same way and expect different results they say it is the definition of insanity.  I get that so I resist the same.

If your baseline shifts and you take the same precautions against a disastrous outcome, you might say you are taking a chance that you might get different results.  I usually control the factors I can and go with the new direction . . . when amnesia sets in from the last failed effort and something new looks promising.

If you smash into a devastating blow anyways and have to retreat to combat the devastation, you might say that you were more rolling the dice than making a reasonable plan for success.

If you add too many factors in any plan, precaution, retreat and come up against a surprise attack from an unforeseen foe then you won’t know what hit either one of you until the smoke clears along with your heads.  Me:  hours of violent convulsive episodes and the aftermath.  Him:  heartache, exhaustion, and no peace.

And if you are me in the latter years of battling a complex illness, you live in shock from the blows of what hit you in the last 24 hours when it is after 6 days of relatively few symptoms.  The new treatments did look promising.  They did not hold off the onslaught, however.  And you paid one of the highest prices once again this side of heaven.

And if you are the beloved husband trying to navigate these landmines, help fight the war while carrying on with the normal and fun activities of life . . . you will have to watch the horror of your beloved get tortured on the battlefield.  You try.  Success is elusive or temporary.  You fail.  Again you grieve and so does she.

And if this well-worn path brings despair then so be it.  Tomorrow is still another day.  As for me, I’m still here and so is my beloved.  Most importantly, I know that my Lord sees my waterfall of tears lain at His throne of grace.  Life will go on somehow as it always does; I have more responsibilities now.  The despair will give way to some sort of hope in due time; the Lord will add His grace and strength to see me and my beloved through once again.

For today, I am like a beaten puppy on this well worn path of life.  It is tough stuff indeed.

Dang!  JJ

Stuck in the middle with you

My beloved is most gracious, loving, and kind to me

For these I am grateful.

My ventures out into community work were wrought with struggle then success

For some good results I am humbled.

My convulsive episodes have lessened then spiked on occasion, giving more clues than questions of late

For this I am, alas, perplexed.

My  labs raise questions about new things that need attention more than providing answers about a cause, per se, oh my

For the discouragement I will turn a cheek and trust my Lord, the Yahweh.

My distant family faces tragedy so we love on those who have come nearer for a time

For them we will simply give our love, again and again.

My life sprints and spurts in a race against time, energy, resources, wisdom, and fatigue

For the long naps this past week I shall be grateful.

My most prized moments are those stuck in the middle of all with you my dearest love

For your tender arms bring Jesus with skin on:  tis a really good thing, being here with you, even now.

My life would matter less if not witnessed, not shared by one who cares for me so and me for him

For such a time as this, you are the most incredible gift.  I love you Steve.  Thank you.

JJ

 

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