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

 

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

Winning through losing

Winning through losing is the title of an article by Pastor Sandy Adams in the Summer 2017 issue of Calvary Chapel Magazine that touched my heart and lightened my burden this day.  Pastor Adams told the story of the Apostle Paul of the Bible who, after coming to faith in Christ, never had a “thorn in his flesh” removed despite praying three times.  He describes it as follows with a passage from 2nd Corinthians, Chapter 12:

Paul learned to view his thorn as God’s gift.  He rejoiced in the weakness it caused; for it became God’s opportunity to demonstrate His supernatural strength.  Paul rejoices in verse 10, “Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ’s sake.  for when I am weak, then I am strong.”  He took pleasure in circumstances where he was no longer in control.  A weak Paul empowered by God’s grace was more effective than a strong Paul at peak performance.  Paul was confident that God’s grace was sufficient. (p. 52)

Pastor Adams goes on to encourage us that the Lord’s greatest work is in our times of defeat:  a work that He intends to do all along.  “Rest in this:  When we are at our weakest, God makes us strongest.” (p. 52)

It is my hope that my writings here will exemplify this teaching.  I have struggled greatly these past few weeks with episodes of physical and spiritual darkness too ugly to describe publically.  To think that I may never be free from daily convulsive episodes is a burden to great for me to bear in the midst of these setbacks.  At the same time, I continue to have a sense that perhaps soon they will stop.  Should I not hope that they stop?  I think not.  My calling is to remain faithful to the moments in which I find myself:  doing that which the Lord wants me to do, discerning the leading of the Holy Spirit, dwelling in the presence of my King often.  If that means being obedient to the Lord’s call to get off the couch to take a rescue remedy while my head is banging, my legs aren’t working right, and pressured vocalizations are emanating from deep within my loins then I will trust that my Heavenly Father will keep me safe while I do so.  It’s amazing how supernatural power overcomes my own inability to move my body correctly.  His power is real!

I recently completed a course of antibiotics to treat a gut infection that may have a connection to my brain symptoms.  The medication hurt me with damaging side effects.  After 10 days I called my Doctor and transitioned to the first of two herbal protocols that would follow next.  Tomorrow morning I will start the second of these two plans including dosing at an elevated level of an antimicrobial that I have largely tolerated in the past.  I am hopeful that recovery is possible with this new plan.  After reading Pastor Adam’s article today I will remain mindful that there is purpose and power in every moment of this journey no matter the outcome will be.  The power of Christ has indeed rested upon me in my weakest, most breathless states.  I have trusted Him completely albeit not perfectly.  He has ordained these days for me revealed in other levels of healing that I cannot disclose right now:  the longest held desires of my heart have been addressed, have been comforted.  Through seizures!

In time, the Apostle Paul saw his thorns as a gift.  “Imagine, a thorn gift” suggests Pastor Adams.  “When Paul accepted his thorn as a gift, God gave him strength.”  As I have come to my own level of peace with this serious illness, I have received many gifts as well.  Another great blessing has come from my beloved husband, Steve’s, unfailing love, presence in the darkest of times, prayers, and gifts of the spirit.  He is often my Jesus with skin-on, so to speak.  This morning he anointed me with oil as he prayed for me in the aftermath of incredible difficulties.  Oh Lord, please bless this man, this instrument of your peace!  Help me to love and serve him as you would have me do so with your strength, with words from You to encourage his heart.

You know I never really thrived when posed with a competitive situation at home, with my peers, at work, at school, or in most places in life even though I know that it is o.k. to strive for excellence in all of these settings.  I usually fell short before reaching the prize.  Perhaps my focus was on the wrong place?  Winning through losing brings us to the eternal finish line, the one that matters most, in second place behind the Lord, Jesus Christ who will share in the victory that He hath created all along the proverbial races of life.  These are the ones that truly matter.  The ones where we let Him carry us or infuse us with His grace, His power as we cross over into eternal glory.

Now that’s a medal I do want to take “home.”  Lord, in your mercy, help me to finish well!  JJ

2 Cor, 2 Corinthians, 2:9, weakness, grace, sufficient, Christ, power, overcoming trials, Bible verse, encouraging