The old “friend” hath changed

When time determines a revisit to old friend you never wanted anyways

You step back and wonder what to make of the unlikely bedfellow:

The one who keeps you up at night in the most ugliest of encounters,

The one who left but came back with a nastier stench and puzzling cry.

He must be male for his strength surpasses my own

Unpredictable now for the feminine who thought she’d figured him out

But not so, little one, for he now brings new mysteries to untangle

And the next round of testing is still 48 very long and arduous hours away.

How will I survive this round with return of the wretched head-banging

The one that collapses my left side then right, no mostly my left arm and leg?

Unable to speak, the screams erupt from my frame twisting as it cramps

My neck reminding me of a symptom that has never left from the last time he came.

The chiropractic whiz-bang, the Florida dental magic held so much promise this year

Some energy returned as the puffiness in my face diminished, my, my indeed

Amazing things happen when your body doesn’t seize the very breaths of its life:

Ones that my body now craves as I struggle to chew the morsels my love fed me tonight.

vertebral arteries, seizures, convulsions, vertebral artery test, CTA, angiogram

No, this masculine drone has a different genre entirely, one triggered when I lean back

So scan it we must with more drugs to keep my body from freaking out with the dye

To see if vertebral arteries bear any aneurysm, stenosis, blockage, anomaly oh my

And cause much of what remains of this wretched hell that has returned, that’s no lie.

Perhaps the neck treatments of late, the dental appliances for TMJ

Have taken pressure off for a time so I could regain my strength for the finale

Might we yet find the real trigger of all of this illness nearing 7 years next month (?)

Hang tight my shiny knight, for very soon we might really know the “why!”

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

 

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

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