I’m still here

A brief update:

A second trip is now behind me to see my Craniomandibular Specialist in a southern state and the problems plaguing me for 6 1/2 long years are significantly less and yet my progress has plateaued.  Maybe it’s still the fatigue of travelling alone for the first time in 11 years?  Holy cow, I did it!  And ugh too.  It was hard.   Regrouping and resting now, changing up a few things, and I am noticing that those changes are already helping, for example, to  reduce the daily headaches to a trace level.  Amazing!

I am tempted to be discouraged about the plateau in progress and some setbacks but I will choose not to be so.  Both happen in the jagged line of recovery from serious illness.

Life goes on and the care of a family member in that same southern state began before the first medical trip.  Looks like the Lord had more planned than we originally thought when my hubby and I took a leap of faith to seek treatment 1,000 miles away from Indiana!  We are now preparing to welcome my Aunt into our home for 2 months this summer after many hours of preparation, work, and communication with multiple parties.  There is much to do!

Seems that the Lord wants me to keep moving forward as he has created a new role for me with increasing responsibilities:  caregiver.  I never thought that it would be harder to care for one tiny lady than the TWENTY I served in a day in my professional role as an Occupational Therapist.  Right now it is!

My Doctor’s office cancelling 7 medical appointments already this year due to chaotic scheduling issues confirmed my pursuit of a new integrative medicine specialist.  My Doc is upset and I am proceeding to transition some of my care to her anyways.  The change is refreshing and creates hope in some areas not addressed of late.

Steve and I have several decisions to make should my family member decide to move in with us later this year after her summer visit.  Some parts of our life could accommodate her easily, others not so much.  We will have some financial decisions to make involving vehicles, housing, and several lifestyle choices.  Could be good?  We are exploring many options and leaning on the Lord as we go . . .

I am a bit overwhelmed with the new modalities that have come since pursuing specialized Temporal Mandibular Disorder treatment, from application of a TENS unit to switching out dental appliances every time I eat or sleep.  Wonder where I have been instead of writing updates on the Hope Beyond blog?  I am still here, flossing my teeth 4 times per day!  Spitting mouthwash into a baggie in my truck after eating between appointments when away from home is not that unusual for me now . . . from the back of the parking lot where no one can see me of course!  Oh my!

The biggest change of late is having a bit more energy and mental capacity to do a little more a few days per week.  I am exceedingly grateful for this.  Thank you Lord!  We anticipate a lot of changes, projects, and the need for both physical and mental stamina this coming year and looks like it is coming little by little.   I hope the finances for everything will follow as my Go Fund Me campaign has also plateaued!  We will figure it out, so no worries.  The first of the two medical trips is now covered, gratefully.  God is good and the Great Provider has always cared for our needs.  I can see a possibility of working some within a year a so depending upon the needs of our “new” family member; she may move in with us permanently or choose to live closer to her adult children in Michigan.  Just not sure yet.

I am tired.  Healing takes sooooo much energy from healthy food and rest, good supplements, time with the Lord, and restoration activities with my beloved Stevers.  Sunday was my birthday so we did that last one.  A simple day was a great gift with my bestest buddy.  I love him so much.  I am so very glad that you are still here too.  I could never have made it today without you Babe.  Thank you Jesus for Steve.  Please bless him this week and encourage him as he works so hard for both of us.  Infuse him with your Spirit to lead us through this maze of life in which we bumble along.  Help me to love him, respect him better and better too.

woman, birthday cake, birthday, carrot cake, celebration, lunch, with husband, Christian, woman kissing cake, table by the window, lake view

Carrot cake was my birthday treat at the Oakwood Resort on Lake Wauwasee

I know that the Lord has gone before me and been with me, drawing me to Himself and bringing me to the moments He planned for me yesterday, today, and tomorrow.  I lay everything named here in your mighty hands as I prepare to go to sleep.  I know that You are still here too.

And on that promise all of us here may rest.  You too.  Godspeed Gentle Reader, JJ

 

A Matter of Perspective

humor, bathing suit, top, insert, perspective

Alone on the beach I lain

Broken-hearted and abandoned,

Missing my other half

A bit humbled in the warm sun.

She left me here all alone

Doesn’t she miss me or know I’m gone?

Maybe she broke free from the tyranny

Who needs a padded insert to swim in the surf anyways?

I suppose you all figured out the item in the picture by now?  I found it to be hilarious finding it on the sand of the beach at Port Canaveral, Florida earlier this month!  My beloved and I were there to witness a rocket launch a mile away to the south along Playalinda Beach.  It was surreal.  I wonder if the gal missing part of her bathing suit top felt the same way?  🙂

That day was a bit of an oasis in the middle of a medical trip that continues to change my life for the better.  I was exceedingly exhausted just 1 week after treatment began and felt out of place sitting on a sandy beach with large, acrylic dental appliances in my mouth.  I was unable to eat without changing out appliances (which meant rinsing them in a Ziploc plastic bag with paper towels to soak up the mouthwash) and was nearly nauseous with a lot of head-jaw-neck pain from the aggressive dynamics achieved by the splints.  On the other hand, Steve was geared up to hit the waves in our outrigger canoe!  We both slathered on the sunscreen and lugged our stuff up a long flight of wooden steps, over the berm, and down onto the beach.  With a big umbrella in-hand, I was going to make the best of things that 86-degree day  . . .

And so we did.  I sat in front of the most majestic view you would never find in our home State of Indiana (note new cover photo above!) munching on my lunch, brushing dental appliances, and taking pictures of the coolest dude on the shoreline.  A few hours later I witnessed the magical sight of a rocket being launched into space:  a satellite developed by the same company that Steve works for in Indiana.  Steve had gotten an inside scoop from co-workers at the Melbourne headquarters of how to get the best view.  (Incredibly Harris allowed him to work there remotely between my medical visits and before we would return home.)  The launch was spectacular!

Harris, rocket launch, Cape Canaveral, March, 2018, sky, trails, space

 

I have come to believe that the Lord cares for everything in our lives from the mundane to the big, spectacular moments in time.  He attends to every detail, crafts them for our best good.  I am thinking that many of the rewards in life generally come in some way or another when I am able to move off my limited view and trust that my Lord, Jesus Christ has a bigger plan.  It just might be a good one.  My change in perspective will help to find it.  The fact that so many years have held me captive with much agony in the past is really no predictor of what the future holds.  I simply do not know.

This leap of faith to pursue a new treatment approach 1,000 miles from home is changing my life day by day.  The minor setbacks are easier to take than in the past and don’t last very long, gratefully.  My perspective on most things in life, my expectations, my faith, and so much more have changed accordingly.  One of the sweetest rewards is sharing this  newness of life with my hero, my Stevers.  I love him so!  And I am so proud of him, grateful for him, and in awe of his strength, faith, and love during our eleven years together.  The anniversary of our first date is coming up soon!  Oh I could go on . . .

How about if I just end with another awesome sight from the beach that day.  Isn’t he just the coolest dude ya ever did see?  I love you Stevers!  :JJ

outrigger canoe, beach, surf, OC-1, carry, carbon fiber, racing, Mocke, life vest, life jacket,

My River Bear carrying our OC-1 out from the surf as the tide rolls in onto Playalinda Beach, north of Cape Canaveral, March 1, 2018

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

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

Taking Turns

He needs me not but benefits just the same

And I am there to fill his tummy, help out at river races.

Then the nights return with my special kind of hell

And he brings me this or that to get the ravages of illness to stop.

Both are love in their simplest forms:

Meant to serve, to go beyond what is comfortable to desires of the heart.

Oh that my end could be gentler, the wretchedness, the pain

Making the care less traumatic between seemingly timed screams for hours on end.

But that is not our story at least for this season of life

(We define our bond in sickness and in health)

In moments at edges of the extreme . . . for over five years now.

We are weary from the journey with bodies broken with fatigue

Where only the Holy Spirit can infuse us with grace to carry us through the nights and days.

So when those pundits talk formulas of 50-50 or equations of sort

Plunge them into our caldron and see how the overflow of energies exceeds the common core.

Marriage is simply the art of taking turns without keeping score

The Heavenly Father sees the man, the woman and makes you what you are:

Instruments of His hands, ministers of His peace

Care that makes love come alive, pictures of His glory.

One day we will know why

 

 

kayak, canoe, racing, paddling, awards, ceremony, St. Joe River, Fort Wayne, competition, C2, Stellar, Steve Horney

Steve on the right, congratulating C2 Aluminum Canoe paddlers George and Tilman during awards the Three Rivers Fest 7.15.17

this all came about

In the meantime I will take my turn when it comes

And serve my beloved for a purpose beyond . . .

JJ