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

The Trip That Wasn’t

The best plans with reservations and all

Lain ready for some last minute cooking, packing, and prep

We would camp in the rain in a humid State down south

And see my Dentist, my Aunt, and maybe a friend.

But as much as we tried to make it all happen

This trip was simply not meant to be this time around.

Ten days ago I got pneumonia and treatment began thereafter

Oral antibiotics then IV infusions of same

With more drugs than I care to mention to manage the symptoms.

I had forgotten since my last bout with same in 2009

Just how dangerous and devastating a lung infection can be.

So rather than risk infecting my Aunt with her own health issues,

And delay my own healing with the rigors of 4 day-long car rides

We won’t be going nor helping out my Aunt until much later instead.

This isn’t really a poem, just some prose to get it out of my head

I am exceedingly disappointed, confused, and not sure what to do instead.

Rest of course.  Try to get our home back in order from being away at the hospital each day

Let go of the questionable care from nurses who didn’t know or care that much about me

And rekindle the love with my River Bear who makes it all alright anyways.

How can one make sense of plans gone awry:  it just doesn’t seem right

Well my Lord’s already there, so in Him I will trust.  He’s had my back every other time!

JJ

 

He Ain’t Got Drowned, Thank the Lord!

Warning:  Read this until the end!

He left before I woke up and long after I was up in the middle of the night baking him cookies for the race.  Another strange night it was.  I had crashed early in the evening, many hours before my bed time . . . not that there is a usual bed time, that is.  I am still up very late about 2 nights per week yet that is a huuuuge improvement from my years as a night owl.  But my tummy hurt and I just couldn’t stay asleep.  All I could think about was those cookies that I wasn’t able to bake as promised and the risk of my beloved River Bear collapsing in the river the next day.  So I got up and started mixing up the ingredients sometime after 2:00 a.m.  The story was unveiling vividly in my mind as the scent of baking chocolate chips and Irish butter filled the air . . .

My beloved would be paddling a new-to-him Wenonah J203 carbon-fiber marathon canoe, probably putting him at the back of the more accomplished river rats on Saturday.  They all would be pushing their limits in the cold and rainy weather, trying to get back into shape for the upcoming race season.  RB would be no different.  The only difference is that he would be competing with a sinus infection on top of some chronic breathing issues.  The  realization of the risks was just enough to drive the mind wild of a kayaking-turned-canoeing “widow.”  Yeah, I don’t see him much during the Spring-Summer-Fall racing season so temporary paddling “widow” I become!

Today was especially of concern.  If he got a coughing spell when on a remote part of the river, spread out for miles over the course with the other dozen-or-so racers, there’s a good chance that only a real bear in the woods would have heard him struggling.  His  brown, furry cousin probably would not have minded my beloved’s residual garlic breath as he munched on his serendipitous, soggy lunch feast.  But that was not the worst of my worries.  More likely another racer in an equally tippy performance kayak would see my beloved slumping forward, splash into the water to save him, and be unable to do much of anything about it.  I foresaw in my mind’s eye that probably would be LB, of course.

She in her 4-foot 10-inch frame would jump out of her boat, neither one wearing a life jacket despite the cooler water conditions, and wrestle with RB’s muscular/lifeless body as it flopped into the current of the Tippicanoe River:  he almost 70 pounds her senior and her struggling to keep both of them afloat.  The river would win and down he would go.  She would be traumatized and exhausted from the fight against the swirling water, the soaked mass of a man, the expensive boats and paddles flowing downstream, the desperate feeling of not being able to save him no matter how hard she tried.  I could see it all in my mind’s eye, of course, in an instant.  I had been in a similar situation myself just 8 years ago during my first encounter with a performance sea kayak on the Allegheny River.  I feared for my life!

Back at the boat launch or maybe when she could signal for help, LB would desperately reach out.  The fellow racers would leap into action, scouring the shoreline for signs of the man who teased them hours earlier with a craft beer for any seasoned canoeist who could beat him on his maiden voyage that day.  They may or may not find him or his gear.  The rescue boat would eventually arrive, find and take his body to a local hospital for the fateful pronouncement.  The paddlers would stand in a circle at the take-out speechless, none volunteering to call the wife over 100 miles away who had sent along home-baked cookies for the annual meeting afterwards.  No one would be brave enough to call her or maybe the Fire Department would at least leave a message?

Do they ever really tell you all of the news anyways that you need to know when you get a dire phone call at a time like this?  I would then be in my own racing seat as I made the 2-hour drive to the Lafayette area, wondering if I had the right name of the facility where my RB was being held under refrigeration.  Perhaps I would drive from facility to facility searching for my loved one?  And what would they tell me when I found him?  Would anyone be there to tell me the story of what happened?  Would the racers have taken a luscious cookie but gone on home anyways, themselves suffering from the trauma of the friendly competition gone wrong?

And what would I do next?  What about the pup at home, the phone calls that needed to be made?  I would probably have to stay over a few nights to release my hubby’s body to return to our home town on Monday morning and begin preparations for the worst event of my life:  a funeral!  I have done this in the past a few times and it is exceedingly and painfully difficult.  Oh dear, what would become of my elderly family member out of state for whom I have become a measure of a caregiver?  Where would my beloved’s children stay, what would I say when they arrived grieved beyond belief from all over the country and 2 foreign countries?  Holy cow.  Maybe I would just sink and die myself right then and there rather than deal with it all.

Or maybe not.

*************

Twelve hours and 2 naps later, I heard the side door open.  My River Bear was home!!!  I was in shock.  Where did I just go in my mind and my heart for way too many hours?  In what or where have I placed my trust?  And why the heck am I so very needy, so weak, such a worry-wart when the Lord has been faithful to lead me through horrible tragedy dozens of times before.  Is this mental exercise really helpful at any level?  The answer:  NOOOOOOOOOO!!!

I have come to realize that there are a couple of coping mechanisms that come with enduring serious illness for many years that don’t work very well at all in a fit brain.  One of them is living each day with a sense of impending doom.  When virtually every night and every morning for the past 6 years was met with violent convulsive episodes, I lived every day with a sense that bad things were always going to happen.  It was just a matter of time before they did.  Well guess what?  The convulsive episodes don’t happen every night or every morning anymore!  I have got to let go of this “stinking thinking” as we used to say in my 12-step group days.  Husbands virtually  always come home.  And if they don’t right way, they usually have an amazing story to tell that makes you fall in love with them even more!

Another coping mechanism that got exercised in writing this story was that of always needing a contingency plan.  More recently, every time I would plan to do an activity at home or elsewhere I set up alternatives in my mind of what I would do in case I got sick.  I told RB my plans for the day, I had every “rescue remedy” I could think of in a lunch bag with me, and kept running errands until I was exhausted — just in case I was too sick the next few days to leave the house.  As you can see from the bit of paddling fiction above, I listed a few of the questions running through my mind but in my head, many more options and scenarios were playing out in my mental tool box.  What a colossal waste of physical and emotional energy!   While a “scarcity” mindset may work in times of famine or flood, I really don’t need it with me anymore.  Me and the Lord will figure out whatever may come my way.  Geez!

Of course an obvious failed coping mechanism is last on my list today:  a false sense of control.  I cannot predict anything that will happen, good or bad, and neither can you.  If I truly trusted the Lord with my life in times of tragedy and triumph then I would not need these fantasy games to cope with the fact that I have a REAL MAN who LOVES ADVENTURE no matter if he is sick or well.  That makes him who he is!  And his passion for life makes him the man in whom I fell in love over 10 years ago.  No wimpy dude over here!  He pushes the limits to the admiration of his peers and sweat of his competitors because that is just how he is wired.  I guess I am still understanding how different we are, how different the Lord wired each of us.  It is a beautiful thing really.  And, Lord willing, my beloved will always be home at night in pretty darn good shape too, I will add!  :J

Proverbs 3:5-6 (NIV)

Trust in the Lord with all your heart
    and lean not on your own understanding;
in all your ways submit to him,
    and he will make your paths straight.

So the next time my man goes out to do that which he is called to do, I will pray for him and for me both!  I will not respond with fear but anticipation of some great stories in which I may one day join in, Lord willing, as I get stronger each day.  The day is coming soon when I will want to venture myself out into newer, uncharted waters, so-to-speak knowing that my Lord and King is already there, cheering for both me and my River Bear.  This could really be a fun summer after all.  I often cheer, “Goooooo Steeeeeve” from the side of various rivers when my beloved’s paddle hits the water at the sound of the starting gun.  Maybe it’s time for a little, “Gooooooo Julie” too?

Stay tuned.  There’s always another story waiting to be told around here for you Gentle Reader.  The water awaits!  JJ

Stellar, SR, paddling, woman, kayak, kayaking, wing paddle, carbon fiber

Me in my Stellar SR surf ski in 2011

Scorpius, outrigger canoe, OC1, Hawaiian, boat, man, paddling, life jacket, racing, buoy, turn, marathon, River Bear

My River Bear leading the pack at the bouy turn on the St Joe River, Fort Wayne, Indiana in July of 2015

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.

125

EMG testing of the face and jaw

134

Bite evaluation by Dr. Ralph Garcia

207

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!

Anticipation

The plans are set, the slow ramp up has begun

The research behind me the appeal for support made clear

Now to endure the daily wrath before newness may settle in.

Another new treatment, oh help me make it to then Lord!

So much at stake if we do not win

This horrific battle of which I have hated so very much.

One thing is clear:  Who holds the future:

My Lord, my King in Whom I trust

Surely He grieves my suffering and waits with us.

My beloved is tired from the journey . . . so very loooong

Mere moments of goodness, many hours of strife

And yet he loves me just the same.

I am humbled.

Perhaps some goodness will come soon?

sunrise, path, beach, anticipation, waiting, tomorrow, sunset, summer