Just short of maximum destruction

monster truck, women, riding, Maximum Destruction, celebrate, ride a truck

That’s me with my brother’s girlfriend catching a ride on a Saturday night as I waved to my husband from the Monster Truck ride at the Maximum Destruction show.  Although I had never ridden in a jacked-up truck before, the figure-8 track of an auto raceway not far from the Motor City is nothing new for me.  I grew up hollering and hooting during demolishion derbies on hot summer weekends in the Detroit area where I grew up.  Virtually everyone in my family worked in the auto industry, the men in my family all tinkered with their cars, and my Dad founded a company that produced the fastest slot car motors on the tracks in the 1960’s.  It seems so long ago yet the adrenaline is so easy to tap into when I hear those engines get revved up!

The racing was exciting!  The effect it had on me was not-so-much exciting as it jittered my fragile nerves.  We did make it all the way through to the trailer races on the figure-8 track at the end of the night:  battered vehicles of all types pulling various types of 2-wheeled trailers for about 10 laps around the track.  The smash-ups drew roars from the crowd and the buggy towing the large teddy bear in a row boat took home the trophy that night.  I was exhausted as my own River Bear drove us home into the wee hours of the morning back across the State lines to Indiana.  What a crazy night!

I am not sure if it was all of the smoke that seeped through my charcoal mask, the vibration of the roaring engines, sitting on those damp wooden bleacher seats, or what exactly affected me the most on Sunday.  I sure slept a lot!  Certainly any of it would have kept me home just 1 year ago.  I am doing better in many ways.  But today brought another bad convulsive episode that seems to be happening again about every other day now.  We are puzzled; I am discouraged.  The healing from the specialized dental appliances and upper cervical chiropractic care appeared to be helping to decrease my reactivity, normalize my sleep/wake cycle, increase my activity level, and overall decrease the episodes.  There were at least 2 days per week when I had no seizure attacks at all!  And now they are back.

The only possibility we can think of right now, after nearly 7 years of serious illness and more medical care than you can imagine is a hidden issue in my cervical spine.  Cervical vascular disease can give rise to traditional seizures but more in the acute phase of these issues than in a chronic phase.  When neck extension can trigger them and the episodes can include a near paralysis of one side of my body then I start to think there is more going on than some pinched cranial nerves.  Have the dental appliances reduced my symptoms 80%?  Yes, until now, they have yet I still deal with the remaining 20% every day.  Chiropractic adjustments and physical therapy  have both triggered and resolved an onset of episodes.

My medical doctor took some convincing then ordered the first of a couple of diagnostic tests after realizing that I have a family history of carotid artery  and heart disease.  I was at the race this weekend with my brother who had a devastating stroke 4 years ago due to occlusion of his carotid arteries.  For me, initial testing shows that my carotid artery is fine; it is the vertebral artery that could be most suspect as it travels around the first cervical vertebrae called the atlas.  More testing should clarify what is going on.  I often have instability or rotation at the level of  C1.  It doesn’t move correctly during flexion or extension according to specialized cervical xrays.  We have got to figure out what is going in these structures in my neck!

Today and some other days recently, Steve providing simple distraction technique of my neck eventually resolved my worst symptoms during a bad episode.  Extreme fatigue follows with an emotional release of frustration, despondency, exasperation, grief, and sorrow.  This has just been going on for so very long!  I am amazed that all of the massively destructive movement patterns occurring thousands of times day after day for years has not caused more damage to my weary frame.  This finding actually gives me hope — that if the episodes stop then maybe I can regain some physical health and fitness with with what is left of me, with the body my Lord has entrusted to my care.  Even those beat-up sedans, pick-up trucks, and other stock cars on the race track somehow keep going to win races week after week.  Just tune ’em up, sure-up the quarter panels-n-bumpers, and onto the track they line up to race another day.

Perhaps that will be me at some level too in my race called “life.”  Only I think I’ll add a little more bling to my frame than the lipstick ladies did to their jalopies during the first heat this past Saturday night.  I might even spruce up the “paint job” on my hair color too.  Next weekend (or hopefully one day soon) just might be my night to shine when the official waves the green flag to get up and go.  Surely that will be a prize worth waiting for . . . just short of the ultimate finish line in heaven.  Yes my Lord, I’m ready!

JJ

Hebrews, 12:1, run, the race, with endurance, Bible verse, race of life

The times inbetween

Tis a time for more resting than doing

And it is unusual for me to give into the slower pace

But give in I must.

The rain garden project awaits an instructor’s touch

While our own landscape decides if bushes or an Amilsh “mini garage”

Will grace the outer banks of our bedroom.

Shall I attempt to rip out the red twig dogwoods,

My fav in garden beds here and the ‘burbs of Chicago

That don’t really like their sunny home but delight the view out the bedroom window til late summer?

The dog days of hot weather have sapped my zest for projects, most anything green

Or maybe it’s from having to stay home when hubby got to go without me

To his National paddling competition afar; yeah I was too tired to even go.

Yeah, I’m kinda down about all the failures these past 2 months —

Alas the Lord spoke to my heart; now maybe they shall give rise to something better for me?

The times in between the hills n valleys can bring a fresh new look

If I but heed the call to slow things down a bit, to rest

There are but a few tic zips here and there so I do believe something is going right at last!

Thank you Lord for seeing me through to this day

For allowing me to pass through the fiery tests, the times of despair, and hopelessness too

I may even get to go paddle locally tomorrow with my beloved River Bear.  Now won’t that just be saweet if I do?  JJ

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

 

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

134

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!

Moving forward with the next big thing

Sure is humbling sharing the nitty gritty of an ugly illness with the world.  Yet I would not be a good steward of the experiences the Lord has allowed in my life for His purposes if I hid them in shame.  So with courage and trust that this will be used for good someday, I share with you my newest video:

Please consider helping us out with our campaign covering us in prayer as we embark on this new treatment adventure for me.   We are hopeful again!

For more details on this amazing story, check out the posts below from this past week.  Thank you to all who have participated already.  We are humbled and exceedingly grateful!  🙂

And Godspeed Gentle Reader.  I appreciate you so!  JJ

The Next Big Thing

Pursuing the Next Big Thing

Julie’s Neuro Treatment