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

I gotta change my teeth!

Alright.  It’s a few decades too soon in my life to be fussing over fake teeth in a restaurant but that is exactly where I have landed.  Or an acrylic mouthpiece of sorts, that is.  Then there’s the one with metal wires in it.  Aaaargh!  This is all kinda gross, especially with bits o’ lunch in thar!

It’s not your average bear that carries around a bottle of mouthwash in a gallon Ziploc freezer bag with 2 paper towels, a funny little brush and a clam-shell plastic box with air holes in it with a spare mouthpiece in tow.  Gentle Reader, you knew I was not undergoing a normal treatment plan when I signed up for this next phase in my recovery from a serious illness.  After all, who said that specialized dental appliances would stop almost 7 years of daily seizure attacks?

The answer:  no one really.  Persons with Tourettes Syndrome, dystonia, and tics have found relief in addition to persons with severe TMJ or Temporal Mandibular Disorders.  Only one expert mentioned “atypical seizures” and another “movement disorders.”  It was the Lord who led me to  examine my own pattern of symptoms and triggers, led by an observation from an ENT in a recent exam, and extensive research that seemed to indicate that I, too, might benefit from this highly skilled approach within the dentistry profession.  It made sense to me that a Craniomandibular Disorder Specialist would be able to relief pressure on my aching jaw.  If it relieved pressure on cranial nerves in the surrounding tissues as well, then there would be a good chance that many of the episode triggers and the convulsive episodes themselves could go down.  So I interviewed thirteen professionals in the USA  then said, “sign me up!”  My beloved agreed.  Graciously, many wonderful folks helped make it happen.

And I am glad that it did happen.  The convulsive episodes are now EIGHTY PERCENT IMPROVED!!!  Yeah God!  Praise the Lord!  Holy cow!  Cool beans!  Plus every other exclamation of joy I have ever used on this here blog.  Just Julie is going to get well!  I can now lie down and get up from bed most of the time without 30 or more minutes of convulsive episodes.  THIS IS HUGE!  Bonus:  my reactivity to noxious sensory stimuli is also down.  My posture is better.  I am able to eat a few more foods that I have been able to in many, many years without triggering a seizure.  Other symptoms have come and gone yet even the nagging jaw pain is also reduced.  I am looking forward to seeing what will happen over time as the improvements continue . . .

The battle is not yet won, however, as my devices will need adjustments and I’ll possibly need new dental appliances as time goes forward.  This will require significant travel to my Doctor out of State, a leap of faith in the Lord’s provision, and a massive testing of my health status to travel by myself.  Am I up to the challenge?  Absolutely.  We will plan carefully and proceed with caution.  Looks like I am on a good path for recovery at last.  I am humbled and grateful beyond what I can put into words.  Thank you Jesus!

Here are a few pictures from the process from my first week on this new journey.  I look a mess in most of them yet that is because I was very sick going into these appointments.  I had six violent convulsive episodes just trying to do the 5 hours of evaluation and was quite depleted by the time it was over.  Afterwards, my hubby and I were so trashed that we stood in the parking lot late that sunny afternoon and ate every snack and drop of water we had with us!  It took days for me to recover yet somehow I knew that my life was about to change very soon.  Three days later I had another very long appointment to receive my mouth splints.  The changes began within a day and continue three weeks later!  Stay tuned for more good news as this story develops.

Gentle Reader, if you are struggling with serious health issues, I encourage you that the Lord sees your suffering, grieves for you, and promises to be there for you for each and every breath, now and forever.  Call upon His name.  There is “hope beyond” what we can see.  Consider trusting the person of Jesus Christ Who will see you through, carry you this day and always.  I would have never made it this far without Him.  I hope we can share in my joy together someday Gentle Reader.  Our God is good!  JJ

xray, dental, appliances, TMJ, TMD, specialized, dystonia, seizures, atypical, tics, Tourettes, Dr. Ralph Garcia, craniomandibular, disorder, treatment

Assistant Josh took about a dozen x-rays to start the evaluation process.

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Dr. Ralph Garcia takes a detailed history; the smell of acrylics from the lab requires wearing a mask.

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EMG testing of the face and jaw

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Bite evaluation by Dr. Ralph Garcia

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Assistant Julie takes photos with and without the new dental appliances.

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Multiple impressions are taken with soft polymers that triggered episodes when the material was cold. Trying to stay calm to get the proper fitting was challenging.

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Waiting room in Dr. Ralph Garcia’s office! We definitely are not in Indiana!

Sunset Beach, Florida, Tampa Bay, wife, husband, couple, married, sunset, sunrise

A little shy first time out in public wearing the smaller of the two dental appliances so I could have a snack while watching the sun go down on Sunset Beach. So grateful that my Dentist’s office was in sunny Tampa, Florida!

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 . . .

 

A Call to Grace

10 Am I now trying to win the approval of human beings, or of God? Or am I trying to please people? If I were still trying to please people, I would not be a servant of Christ.  (Gal 1)

butterfly, Galations, serve, burdens, break free, servant, let go,Christian, heart, image

From the perspective of the supernatural power of grace bestowed by my Lord, Jesus Christ, I write to you this day.  For my flesh is more broken than before, hopes beaten up from the road, and spirit exasperated from the waiting.  Yet I am compelled to look beyond my angst to the call to grace . . .

If I have fallen short of praising my Lord then I am sorry.  Please forgive me.  The alms and adoration to my Savior is what shall draw me nearer to Him and lift my sorrows.

Should I have focused too much on my own needs and not those of others then my selfishness has thus blinded me.  The trials of life have more to do with our response to these trials (and more importantly to others) than to their resolution.  I cannot serve others when my mind is full of woe.  There is always room to love on others.

When I act to make my own plate o’ food and have not called upon God’s infinite power to feed my family then I have shorted all of us to the weakness of my own hands.  My Lord is sufficient for me, enables me to serve beyond my ability.

Where my face has turned to the shiny distractions of this life, pining after them (or worse coveting that which I have been blessed) then I have really made my world smaller.  Who knows the blessing that will come from sacrificial giving?  Gratitude?  And proper placement of my gaze to the Cross?

How much better it is to wait on my Heavenly Father than to cry out my need only to act thereafter in my own strength?  Oh Lord, help me to wait, to listen, to dwell and nothing more during these times.

That about sums it up right now.  Thank you to those who prayed for me last week and who remember me in your prayers.  Please let me know how I may serve you too, k?

JJ