On the Cusp of Many Changes

Here’s a post from last week when I almost didn’t know where to put my focus at any given moment.  Maybe it’s time for a brain dump, prayer, and some quiet before the mayhem?

Inside

The bout of pneumonia is largely past now with occasional coughing spells and nasal rinses to get me through the occasional flare-ups.  Unfortunately this illness has exacerbated the seizure attacks when trying to go to sleep.  It is definitely time for an adjustment to my specialized dental appliances however the trip to go see my Craniomandibular Specialist got cancelled due to the pneumonia.  Oh well, the fact that it has been raining in Florida virtually every day for the last few weeks including a tropical storm this week makes me glad we were not camping in all that mess.  Ever camp and travel in hot, muggy, wet conditions with a large dog?  Yeah, it would have been a moldy, muddy mess for sure!

Outside

We are in the process of selling our Livin Lite Camplite 16 DB that has served us well for the past 4 years.  We very likely will need to accommodate one or more family members during some upcoming travel so we are pursuing the financing of a more suitable travel trailer.  This is a week of finalizing the sale of our “Tin Can Ranch” and the purchase of the new unit, Lord willing, requiring many tasks and 2 long days of travel:  one day this past weekend to scope out the new travel trailer and another day soon to go pick it up.  Travelling a total of 4 days to my medical appointments in Florida was out of the question yet 2 shorter trips over the period of a week was more doable yet very tiring.  No problemmo.  My beloved River Bear is a skilled “bus driver” too!   The cancellation of medical and other appointments this past week (because we were supposed to be out of town!) has allowed for plenty of time for rest-n-naps!  Hopefully the new owner of the 16 DB will be able to solve her delays soon as well.

Things got crazy when late Sunday night in the middle of the Memorial Day weekend we found the perfect travel trailer and price point for our situation!  Within 24 hours of the posting of the listing and us finding it, we were on the road and ultimately making an offer.  Do you think that the Lord cares about the special thingies of our lives?  I submit to you that He does.  The morning of Memorial Day that we were scrambling to take a day-long road trip to see the travel trailer, Steve sold a performance surf ski for his River Bear Racing!  We delivered it to a gentleman along the shores of Lake Erie then headed south to check out the new Camplite.  A week later it was in our driveway!  However, the timing of this transition has found us with TWO travel trailers, much paperwork, a couple of trips to the Bureau of Motor Vehicles, yada, yada, yada.   We are a little nervous but trusting the Lord that things will also be resolved in time for our first camping trip in June . . .

Family

Looks like my family member in Florida will be visiting us for most of the month of July.  It’s still a month away yet many travel arrangements and accommodations are needed to both get her here and have her in our home.  Steve and I still must practice extreme avoidance procedures (changing clothes and showering when coming home from being away) which is tough on an older family member who needs care.  We will make as many preparations as we can before she leaves her home (in a moldy State), have initial provisions for her when she arrives, and hope for the best that her clothing can be sanitized and de-fragranced so she can travel and visit with us in July.  She has many fears, concerns, demands, yet is asking to come.  That is kind of weird since she has traveled with virtually no care just a few months ago and did alright.  So I will be very busy taking care of many details.  Thank the Lord I am less reactive to fragrance and trace amounts of mold, etc., and my activity level has increased some overall these past 2 months!

Home

Getting out in the garden continues to be a great therapy for me in many ways.  The vegetables are now in the ground including a new asparagus bed . . . until the bunnies find it of course!  No worries as I am working on my rascally rabbit defense system as we speak.  Overall I am still months ahead of schedule for Spring clean-up as compared to the past 6 years battling a serious illness.  I am humbled and grateful.  When my days in the past focused on basic household chores and a plethora of medical appointments and treatments.  Was really nice yesterday to sell a piece of medical equipment that I no longer need and then drive directly to a local nursery with the cash to purchase a lavender plant!  The rains today shall nurture the earth and my garden refuge wonderfully.  Thank you Lord for the lovely view out our windows to encourage me on my recovery journey.  You are soooooo good!

I am in awe of the overall goodness of these changes happening in our lives.  Steve an I are grateful and humbled, tired and excited, stressed and energized all at the same time.  So I’ll end with my happy place that provides refuge through it all.  (Can you find the pup in the photo?)

Thank you Lord for your blessings and goodness, love and care.  Gentle Reader:  He is so good!  JJ

Front Door 6.18

 

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 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!