The day passed with gratitude

Seven years ago this night, I contracted viral hepatitis kayaking in a local reservoir, beginning what has become 7 years of serious illness.  Yet today passed with more of a sense of gratitude than mourning the lost years.  May I share the good things that came from this journey?

  • Learning to blog, beginning in the summer of 2012 and continuing to this day.
  • Wrote and published an eBook:  Hope Beyond Lyme:  The First Year
  • Learning to make macrame jewelry, starting an online and vendor jewelry business when up in the middle of the night and selling the business  2 1/2 years later with a sense of accomplishment, closure.
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Friendship Necklace or Bracelet with Seahorse Charm from Trinity Jewelry by Design

  • Learning about the numerous medical conditions for which I would be tested, ruled-out/diagnosed, treated, and make some level of progress on.
  • Started, developed, and moderate a mercury detox group on Facebook that now contains about 3,000 members and 1 Co-Admin!
  • Meeting some dear friends in the chronic illness community in relationships that 1) began locally and have continued to this day or 2) transformed from online to face-to-face either electronically or in-person.  Love you ladies!
  • Learned how to develop simple websites for e-commerce, blogging, and marketing for myself and others.
  • Supported my husband as best as I could in his distributorship of performance kayaks and gear:  River Bear Racing.
  • Became a Master Gardener and advanced within the ranks with as many in-home projects as those in the community.
  • Became an Assistant Editor of the United States Canoe Association publication called Canoe News under the tutelage of the handsome Editor and husband named Steve!
  • Recently became Editor of Across the Fence for the Purdue Extension Master Gardener program.  This required a crash course in another online program:  Microsoft Sway.

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  • Became a better cook and homemaker/helpmate to my beloved Steve as I have been increasingly able to do so as the years have progressed.
  • Became my own patient advocate, occupational therapist, care coordinator, medical billing and records specialist, and health coach.  Sure, I hired a Naturopath for epigenetic counseling that was beyond my brain fog to understand yet kept in-step with as much of my care as humanly possible:  seeking answers and finding some too.
  • Learned to camp via travel trailer aka our mobile clean room!  We are grateful for the Lord’s provision on this one.
  • Taught myself via online videos to sew upholstery for our patio and the travel trailer.

upholstery, learning, sewing, machine, at home, YouTube videos, self-taught, Kermit, RV, cushions

  • Learned to grow vegetables and native plants; working on a community rain garden project for the near future.
  • Experimented with a some volunteer work for our community park this Fall that really stretched my abilities and tolerances.
  • Kept my occupational therapy license current with online continuing education, review of pertinent literature, and following the latest issues-and-trends in my profession.
  • Trialed being a caregiver to an elderly family member.  Didn’t succeed yet worked very hard in this role for six months earlier this year.
  • Became a writer!
  • Fell more deeply in love with my intended beloved, Stevers aka River Bear.
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Steve and Julie at the Fish Lake Race, Indiana, July 2018

  • And most importantly, grew into a vital relationship with my heavenly Father, heavenly Husband, and Savior Jesus Christ.  He is my rock now and forevermore!

How did all of this happen when experiencing daily convulsive episodes and its consequences virtually every day for 6 1/2 of these past 7 years?  Well that’s just how good our God is, Gentle Reader.  Little was done in my own strength in the most wretched of months.  The episodes in general aren’t as bad these days as long as I stay away from the worst noxious stimuli to which I am sensitive and plan rest days accordingly.  They aren’t gone yet.  I’ll write more about a recent setback soon.  Gratefully, the reactivity has come down quite a bit; I can see marvelous progress.  Yeah God and praise the Lord for His mercy and grace!

The day passed with gratitude indeed.  JJ

 

It’s like I’m writing my thesis again

A long time ago in another State, marriage, home, and occupation I was writing my Master’s thesis.  As a matter of fact the weekend after I came home from my honeymoon (with the man who eventually decided he was Mr. Wrong), I spent over 20 hours pounding on the keys of an IBM computer.  Remember word processing in DOS?  No, not me either.  That actually came 3 years later.  I was typing at a TYPEWRITER and hired a TYPIST to create the final 125-page report!  Back then a trip to the copy place was an event and choosing the right type of watermark paper could make a difference between acceptance and rejection of an important document.  At least having it professionally bound was not a requirement back then . . .

All of that typing did not do me, my forearms, nor the first years of my marriage any good.  Eventually I graduated with my Master of Science degree with a thesis that was as long as most Doctoral dissertations at the time!  Oh well.  That’s what happens when your first reader is a scholar in your profession and your third reader is the head of the Department of Occupational Therapy in addition to being a pioneer in the field as well.  I remember Dr. Anne Fisher handing back to me the 11th total re-write of my baby:  it was covered in red ink!  “You are a good writer,” she said.  Say what?  Could you maybe mention that to your ball point pen my dear professor!  Sigh.  Back to the typewriter I went on my way to bilateral epicondylitis or whatever.  I think eventually the repetitive motion injury from typing turned into fibromyalgia.  So I got more than my “MS” degree in graduate school but I digress.

That was 25 years ago.  I now live in a different State with my Intended Beloved, a different occupation, pet dog, hobbies, gardens, vehicles, hair styles, family, friends, church, and dress size!  It’s all good.  And today I completed three different writing projects and it only took about 12 hours!  Thank goodness for word processing, the internet, and Office Depot!  The 3 projects included:

  1. Editing and completing the photo layouts/covers of the Fall issue of Canoe News of the United States Canoe Association.  My husband, Steve, is the Editor and I am the Assistant Editor of this quarterly publication; Fall brings the biggest issue of the year.  It took me about a week to get into the right health state to do what needed to be done and now in the wee hours of the morning I am ready to send it back to my River Bear.

  2. Revising the Huntertown Family Park Rain Garden Project proposal and submitting it to my contact person at the Department of Natural Resources Urban Wildlife Program in application for supplemental funding.

  3. Finally figuring out the Microsoft Sway online software program enough to a) export the October issue of Across the Fence to Word then b) create a pdf file to c) email it to the Horticulture Educator at the Allen County Purdue Extension Office.  This will be my first issue as Editor of the ATF newsletter for the Master Gardeners.  The Educator has been answering all my questions and yet it has been frustrating for both of us.  I hit quite a few snafus with the program not working correctly in our Chrome browser at home; going back to Internet Explorer appears to have solved the problems for now!

Tomorrow will be a rest day.  A good volunteer must do her jobs then rest and recover the next day.  Part of my day will be praising the Lord that I could even do these tasks with the lingering effects of serious illness.  Thank you Jesus for sustaining me, clearing my mind, and helping me to do the tasks to which I am called.  I do pray for restoration now as there are many unfinished chores throughout the house.  Please help me to take care of the things you have entrusted to my life, to love and serve my Stevers.  I know that You see my responsibilities and weaknesses and watch over all of the details of my life.  I rest in your gracious care my Lord.  To You be the glory for the good things accomplished this day.

In Jesus name, amen.  JJ

Canoe News, paddling, competition, racing, wife, magazine, Editor, racing, USCA, volunteer

Cover photo from Canoe News, October 2018

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Rain Garden model bed pending for the Huntertown Family Park

master gardener, volunteer, Purdue Extension, cooperative, gardener, certification, Across the Fence, Editor

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

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