A leaning, a leading?

Palisades Reservoir, lead poisoning, testimonial, summer lake

So I’ve had increased convulsive episodes lately and especially since my beloved came home from a trip. There was fragrance on his person and stuff; that night and the next 3 days went poorly. We suspected the fragrances as a trigger and proceeded to clean everything multiple times. It was yet another sad and frustrating experience to endure yet not without some redeeming value.

Just prior to Steve’s departure for 6 days, I began a new treatment for a fungal sinus infection. I was tolerating it well and had the best 6-8 days than any in the prior 7 years! We were encouraged! 3 days into his trip I developed abdominal pain but attributed it to maybe some stress. It never resolved.

When Steve came home, there started to be convulsive episodes within 2 hours of this compounded sinus treatment. Since I have not tolerated medications for this condition in the past, I was pleased when a functional med Doc found a colloidial silver/EDTA preparation to try. The CS treats the fungal infection and the EDTA helps break up biofilms (which makes the infection harder to treat if missed) in addition to acting as a preservative. I decided to tough it out and continue with the treatment. Surely a chronic sinus infection could make me more vulnerable to noxious smells; the membrane between the sinuses and the brain is tiny. It’s why certain smells (like the baking of bread) can elicit such strong memories.

Lying down and tipping my head back also triggered episodes. Yes I have neck and cervical disc issues. The vertebral artery in my neck is positioned in a vulnerable way. Things are better overall with the improved positioning of my head/neck/jaw using specialized dental appliances. Recent application of specific vagal nerve stimulation techniques had helped both prevent and end convulsive episodes. But all of them became ineffective these past few days.

There appears to be another factor and today the Lord showed me what to do. EDTA is also a chelator of lead. For me, just starting a small amount of a detox agent triggers dumping of the respective toxin. Being post-menopausal and osteoporotic has brought increased lead toxicity noted in blood tests. I’ve already drastically reduced both levels of mercury and many other toxins discovered in numerous lab test, treated in numerous protocols. Today it was time to revisit the lead piece of this health puzzle!

It took quite awhile to communicate to Steve a plan of attack as my body was contorting, erupting in maddening/spontaneous screams, struggling to breathe and sequence the facial movements to produce words. My hands bent backwards into an arthritic/extension pose you might say resembled that of a zombie. My legs would flap together-and-apart violently and repetitively, uncontrollably. My head-and-neck and upper torso writhed in slow motion as I struggled to raise my body up to drink the concoction he would feed me through a straw. And finally when there was a break so I could breathe, sequence the oral-motor steps of swallowing, close my lips around the straw, and drink the potion we created:

Aloe water for gastric comfort
Full spectrum binder from Quicksilver Scientific called the Ultra Binder
Fiji water that contains silica that binds aluminum
Large dose of a zeolite product called CytoDetox for lead and any other heavy metals not covered by the Ultra Binder

I often respond energetically to rescue remedies; liposomals are especially powerful due to their rapid absorption into the bloodstream through the mucosal lining of the mouth. I held some of the liquid in my mouth, around the dental appliance. Then I drank more water.

It wasn’t long before the episode slowed then stopped. An hour later, my abdominal pain was half of what it was. Did you know that abdominal pain is one of the primary symptoms of lead poisoning? I suspect that the EDTA being sprayed directly into my nose and quickly being absorbed into my bloodstream got lead moving quicker than I could chelate out of my body on my own. The Ultra Binder has stopped episodes before. Why else would things turn around so quickly if it wasn’t due to a relatively acute toxicity?

We really want to be able to see family for the upcoming holidays without the heartache and drama of this devastating illness. Day by day we seek the Lord’s wisdom and pray for mercy, for healing. Just when recovery looks promising and there is relief, a horrific setback seems to follow. I can’t even embrace my husband right now for fear of having to pull away in another injurious, head-banging episode. Three weeks ago I went in and out of the worst emotional slump of these past 7 years then realized it was the lies of Satan himself I was believing. I covered it with the truth of my Lord, Jesus Christ Who has promised me in His Word a hope and a future.

So I have a new focus for treatment and looks like some really good tools are already on our kitchen counter, within reach. Will it be fruitful? I really don’t know. Tell you what though, I am still not giving up. There IS hope beyond what we can see and the proof lies with the empty tomb, the risen Christ, the reason for the Christmas season before us. And that keeps me going no matter what comes in the day, in the night.

I hope this is true for you too, Gentle Reader. There is hope beyond what we can see.

With love, JJ

A Well Worn Path

If you travel the same way and expect different results they say it is the definition of insanity.  I get that so I resist the same.

If your baseline shifts and you take the same precautions against a disastrous outcome, you might say you are taking a chance that you might get different results.  I usually control the factors I can and go with the new direction . . . when amnesia sets in from the last failed effort and something new looks promising.

If you smash into a devastating blow anyways and have to retreat to combat the devastation, you might say that you were more rolling the dice than making a reasonable plan for success.

If you add too many factors in any plan, precaution, retreat and come up against a surprise attack from an unforeseen foe then you won’t know what hit either one of you until the smoke clears along with your heads.  Me:  hours of violent convulsive episodes and the aftermath.  Him:  heartache, exhaustion, and no peace.

And if you are me in the latter years of battling a complex illness, you live in shock from the blows of what hit you in the last 24 hours when it is after 6 days of relatively few symptoms.  The new treatments did look promising.  They did not hold off the onslaught, however.  And you paid one of the highest prices once again this side of heaven.

And if you are the beloved husband trying to navigate these landmines, help fight the war while carrying on with the normal and fun activities of life . . . you will have to watch the horror of your beloved get tortured on the battlefield.  You try.  Success is elusive or temporary.  You fail.  Again you grieve and so does she.

And if this well-worn path brings despair then so be it.  Tomorrow is still another day.  As for me, I’m still here and so is my beloved.  Most importantly, I know that my Lord sees my waterfall of tears lain at His throne of grace.  Life will go on somehow as it always does; I have more responsibilities now.  The despair will give way to some sort of hope in due time; the Lord will add His grace and strength to see me and my beloved through once again.

For today, I am like a beaten puppy on this well worn path of life.  It is tough stuff indeed.

Dang!  JJ

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.
DSCF0508

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