But the old friend has no name

My hope went underground when the testing described in my last post revealed nothing of value.  I was crushed.  My beloved hubby had to take part of a day off of work and I had to take two drugs to be able to tolerate the contrast dye.  My doctor sent over new orders to the hospital on the morning of the test, creating further complications.  That new test was not yet authorized by my insurance company.  So would I have to come back and take more drugs, Steve take more time off of work when both tests could be done that day within minutes?  What shall we do?  The radiology staff nor us knew what to do.

We decided that since I do have a secondary insurance, to proceed with both the CT angiogram of the neck and the CT angiogram of the head that day.  The views would be with my head and neck in a neutral position, not in neck extension (which is the position that triggers convulsive episodes).  So I decided to lie on the exam table with my neck partially extended.  True to form, soon after they pushed the iodine contrast dye into my veins a tic then seizure attack erupted!  I couldn’t speak.  Steve let them know the course that these things take so the staff lifted me off the treatment table, onto a gurney, and into an empty room in the adjacent MRI suites.  There we were in the dark until my personal hell decided to stop.  (See here if you haven’t seen it yet.)  Steve helped me to the bathroom via wheelchair, the tech wheeled me out to the exit of the hospital, and we were on our way home.  Somehow I cleaned up once home and got myself to bed to sleep off the drugs for the next 6 hours!  The stress, the drugs in my body diminished thereafter.  All there was left to do was deal with the trauma of what had happened and wait for the test results . . .  No problem, right?

What followed represents the good and the bad of the patient having access to her own test results through the electronic medical record mandated by the Affordable Care Act.  I got my test results 3 WEEKS before the Doctor appointment scheduled to review them! The test was on a Friday and on Tuesday I was reading the radiology reports.  I was crushed.  There were no vascular anomalies that would explain why tipping my head backwards, certain chiropractic adjustments, sleeping on my left side, and a host of other identifiable kinesio/sensory stimuli trigger violent convulsive episodes.   Further, the question remained as to why these episodes are continuing, albeit of less intensity and duration overall, 6 months after treatment with specialized dental appliances?  This treatment brought me an 80% reduction in seizure attacks.  But after chiropractic treatment resumed, that number started to go down:  the episodes had started to increase again.  The “old friend” has returneth but still has no name . . . no cause.

In a future post, I may disclose the profound effect of this dead end in my seven years of battling a serious illness.  Last week after yet another difficult medical process revealed no answers, I really wanted to die.  Within a day that feeling changed and I continued on with my activities of daily living, some volunteer projects, and prepared to attend a women’s retreat within a few more days.  The time away helped some.  I don’t want to die I just don’t know really how to live this way anymore.  There may be some clues in the test results of what to focus on next related to a thyroid condition — or maybe not.  My veracious researching a cause, a cure has come to a screeching halt.  Right now is the time for me to dwell in the eternal space of my Savior, Jesus Christ and lie this illness at the foot of His Cross.  The lies of Satan and his tools of discouragement can go to hell with him, period.

Can’t say much more than that right now.  Tomorrow I need to be up and energetic at an event I thought I could volunteer at in preparation for another project of greater interest to me.  We’ll see how it goes.  My alarm is set.  But the get up and go, the drive in my heart is more asleep than I am at the moment.

Maybe something good will happen soon?  I’ll letcha know if it does, Gentle Reader.  You are always on my heart and the first to know as usual, k?  JJ

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