Something old, something new

Soon I will come up on the seven year anniversary of when serious illness entered my life.  No, I won’t be kayaking in the Cedarville Reservoir to commemorate October 11, 2011!  That’s the day I contracted viral hepatitis and never really recovered.  It’s been a complicated journey since then, trying to get well.

Soon I will meet with my Doctor and see what he thinks about a new treatment with which I have been experimenting.  Recently I wrote about how devastated I was when  some vascular studies revealed no new information about why the convulsive episodes continue.  Over the next week I dwelt at the foot of the Cross of my Savior and He showed me some things I had not considered before:  many of the triggers of episodes have had something to do with my neck.  The CT Angiogram helped me examine this issue more closely and led me back to a comment by an ENT specialist back in January.  He said I should look into vagal nerve seizures and so I did.  That process led me to pursue specialized dental appliances that helped take pressure off of most of the cranial nerves involved in episodes and they started coming down within a day or two.  Adjustments in the appliances helped further then the improvements waxed and waned as time went on.  It is now 7 months later.  They are a pain to wear and look weird.  What else could be going on?

Soon I may have more of an answer to that question as I experiment with specific stimulation of one of the 12 cranial nerves:  the vagus nerve as it travels through my neck area.  A person has to be careful with this as it lies in close proximity, distal to the carotid arteries, thyroid, and parathyroid glands in the front of the neck.  Indeed vagal nerve seizures is a part of some forms of epileptic seizures and is treated with a surgically implanted vagal nerve stimulator.  A person has to have a diagnosis of intractable epilepsy or migraine headaches with treatment failures from trials of two types of medications before it is deemed medically feasible.  For me, no epileptiform activity was ever detected in EEG sleep studies even though numerous convulsive episodes occurred during two different studies in two different clinics.  I now wonder if they should have been watching the heart monitor not the EEG monitor when the episodes spiked.  Changes in heart rate and other vitals can accompany a seizure.  I have experienced this.  Were these factors recorded but missed in my clinical studies?

vagus nerve, vagal nerve seizures, vagal nerve stimulation, non-epileptic seizures, psychogenic seizures

Hopefully soon my experimentation with two different vibrating wands will stop these wretched seizure attacks altogether.  I found 2 very simple devices that I could carry with me, experimented until I figured out which ones work better at a given time of day.  The high-frequency wand makes me sleepy so I use it at night.  The lower frequency wand is more effective during the daytime should I feel the symptoms of a pre-tic episode.  How cool is this?  Yes, I still need to avoid certain head-and-neck positions due to other cervical spine issues, get back into either chiropractic care or physical therapy, and review everything with my primary Doctor.  I will continue wearing my specialized dental appliances.  In the meantime, it sure is nice having a better option than Prednisone (which I can only take in emergency situations!) to bring real relief for daily involuntary head-banging!

Will letcha know really soon, Gentle Reader if this all leads to something GOOD.  In the meantime, I am encouraged.  And grateful.  Thank you Lord, for bringing hope beyond what I can see once again.  JJ

 

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

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