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

 

Move freely, heal well my dear

 

dancing

The importance of moving

Cannot be understated

The body not the soul,

One’s frame sans the stuff.

Blood flows, lymph drains

Breath deepens, waste can leave

If only we help it with

A little muscle contraction against gravity.

[So easy for her to say to me today!]

I cried in fear

As physical therapy began

I’d been here before

And knew about the score.

But wretched seizures

Met me by each session’s end

My body erased

The good that had ensued.

It could be different

Now that the beast is tamed

Perhaps give way to healing

And actually doing my home exercises?

Ah what a delight that will be

I do see it coming out there

Can almost reach it, so sweet

This is the beginning of healing!

Just had to mourn

Seven years lost since

The time I moved with ease

When no fear waited in every corner.

[Sigh.]

Today marked a new beginning

This time appears to be for real

Thank you my Jesus, for carrying me through

Time to give in to freedom as the healing is now here!

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

I wait on thee

The needs are placed in the hands that be

My Lord in the lead guiding him, guiding me.

Appointments are scheduled, travel plans now made

Funds graciously coming in from the recent campaign.

I am humbled and anxious and weary and weak

Not knowing which way to turn or what to speak.

We must prepare now and pack as the time to leave nears

So much is there to do, to organize, coordinate, make some repairs.

If it be so that I will sell some things to help this lofty cause

To obtain the treatment that will heal my nerves and my jaw.

Three episodes today, when eating lunch then trying to make dinner

So I pureed my meal and with lots of yummy butter; it was a winner.

It’s too late to cry sans the stains have stung my cheeks and my clothes

I wonder if we will ever get answers from the One Who already knows?

Regardless I will forever choose to rest in the arms of my King

He brought me here, promised deliverance, so I trust Him with everything.

trust in the Lord, faith, Proverbs, 3, 5-6, scripture, Bible, verse, trust, how it plays out, daily life

Pursuing The Next Big Thing

Well I gave a detailed rationale in a recent post for me pursuing TMJ/TMD treatment to help alleviate intractable seizure attacks that have plagued me for the past 6 years.  Basically if the cranial nerves that exit the brain at the top of the neck are pinched from tight or misaligned muscles and tissues around the face, neck, and jaw then pain and a myriad of neurological problems can follow.  A physical trauma, especially auto accidents, often starts the problem.  Dental professionals who specialize in this area can provide relief for movement disorders such as Tourettes Syndrome, Parkinson’s Disease, tics, dystonia, and atypical seizure disorders using various dental appliances and therapies.  My research into this began a few weeks ago after an Ear Nose and Throat Doctor suggested I look into issues related to one of the twelve cranial nerves (vagus); I found that my symptoms involved seem to relate to several of them and require a broader, more functional bio-mechanical perspective.

Sooooo, since TMJ pain began for me after an auto accident in 1996 and worsened with convulsive episodes beginning in 2012, I brought up this topic with my chiropractor and brilliant primary care doctor this week.  Both agreed that specialized dental appliances are a good avenue to pursue.  Both have provided supporting medical documentation to support my case and the latter reviewed the Curriculum Vitae of the Dental Specialist that I have selected (after interviewing 13 dental professionals from around the country!).  My hubby and I are prayerfully preparing to proceed accordingly, with faith and confidence that the treatment will be effective in due time.

Once we made the decision, we had no idea what would happen next.  There are significant unknowns in this process, not the least of which is a significant financial commitment for specialized care out-of-pocket and for out-of-state travel for nearly 3 weeks.  We just knew that I needed a new treatment direction and that these new interventions seemed compelling to address many problem areas (’cause hey, even chewing food can trigger episodes!).  The next steps were for Steve to approach his employer for an extended leave of absence and for me to start scheduling appointments, making campground reservations, contacting family in the area, and so on.  Gentle Reader, it’s only been two days and the following blessings have already come to light:

Steve’s employer granted his request for a leave of absence and will provide a company computer so that he may work remotely while we are away.  Harris’s company headquarters is about 2 1/2 hours away from my new Doctor’s office by car and for the second week of our trip, Steve will be able to share an office there with a former coworker he knows who transferred there 2 years ago.  Awesome!  And guess what?  His employer is located near the Kennedy Space Center where Harris will be launching a ROCKET FROM CAPE CANAVERAL right in the middle of the 4 days we will be staying in the area!  Holy cow!  How cool is all of that?

Just a week ago, I finally was able to get in touch with a best friend from my childhood with whom I have not spoken in around 37 YEARS.  Guess where she, her sister, and her Dad live?  Very close to the same town where I will be having my treatment!  They were a huge part of my growing up years, especially after my parents were divorced when I was barely a teenager.  Tammy and I spent hours playing house or school on her back patio after dragging outside a myriad of furniture and supplies from both of our homes.  Sometimes we had just gotten things set up and her mom would come home from work so we had to put it all away again!  Then there was the backyard carnival we made to raise money for the Muscular Dystrophy Association.  Her little sister, Patty, dressed up like a gypsy to give words of wisdom in the “fortune telling” pup tent!  Their Dad was so very sweet to me when I would see him working in the yard, carrying tools along the sidewalk between our houses.  His kindness was very comforting at a tender time in my life.  All are good memories indeed.  I look forward to seeing each of them!

Halloween, 1960s, 1967, front porch, Linville, Warren, Michigan, Kids, children, costumes
From right to left: Julie, little brother Rob, Tammy, Tammy’s little sister Patti, and another neighbor at Halloween in 1967 or so!

If that wasn’t enough, we also hope to see an Aunt of mine who has lived in the area for decades.  Steve and I last visited her 5 years ago when I was near the beginning of this illness.  When I talked to her on the phone about maybe seeing her, she disclosed that she is struggling with a serious brain disease and having difficulty functioning.  My heart sank.  She explained quite candidly that her ability to perform activities of daily living has become increasingly compromised over the past year such that she doesn’t want to live alone anymore.  She has not been able to obtain assistance from her medical providers in obtaining the supports she needs.  It is not clear how aware my two cousins are of her condition; I may be the first person to visit her home for many years as all of us live 1,000 miles or more away.  My heart is breaking for her while my mind as a licensed occupational therapist is churning with the possibilities of what this all means.  Steve and I will start to sort this out by going to visit my Aunt with the goal to simply love on her, bring a meal, and visit for awhile.  Lord knows what will follow thereafter, likely some phone calls to my cousins up north . . .

Gee, if all of this has transpired in just 2 days, I wonder what awaits us in the next week?  We are praying continuously about everything mentioned here as we begin to make our travel arrangements.  There are repairs needed on the travel trailer and much to do.  What is certain though, is that our Lord Jesus Christ is already paving the path before us.   He always does, of course, and this time we are in awe as we can see it unfolding as we speak!  Very likely we will need to raise some funds for my care so stay tuned for the details and please pray with us as we embark on this magnificent adventure.  I have been through dark times before and have seen the Lord miraculously “restore the years the locusts had eaten.”  (Joel 2:25)  Sure looks like He is moving again in our lives right now in a big way.  Thank you for coming along side me with each post here, each little tear.  You make a difference just being there reading this, tracking my story.  God bless you for hanging in there with me!

Gentle Reader, I have hope again.  :J