I long for you

My intended beloved, oh man of my longing

How is it that these things come between you and me?

I lie next to your warmth, oh so ready to imbibe

Til the horror of illness keeps me far, far away once more.

Albeit evil it must be:  a test for my weary, so weary heart

You know my lord and my Lord that I do shake with grief so!

Perhaps just for a time, please wait for me love

I shall return soon when illness has gone one day, I promise, I do.

Until then know that you are the one for whom that my heart sings

The one who loves me so, beyond that which I can even wanton,

My knight in shining aluminum, we jest, but you are indeed more

And know me well, I love you too . . . this is all I need to know to live.

Our Jesus is out in front of us two leading us on

When darkness comes, oh here it is again, we shall not be moved;

Hold me as you are able or as my frame lets you in

Forever in my heart you know you will for always be with  me.

Solomon, 3:4, Christian, marriage, trials, chronic illness, sickness, intimacy, sexuality, wife, husband, Lyme, seizures

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.

fence, cartoon, across the fence, transitions, crossing over, life

  • 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.
husband and wife, paddling, gratitude, Christian, marriage, summer day, wife, husband

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

 

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

 

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

rain garden, rocks, drainage, flooding, native plants, volunteer

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