Tag: Tics

What you have meant to me

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When I started the Quicksilver Mercury Detox Group on Facebook, I was a hurting puppy. Here’s my mercury detox story as of February 23, 2021.

In 2014, I had been sick for nearly 3 years with what had become a very serious and complicated illness. You can read more about my journey here. I had fallen into the camp of persons on the earlier side of chronic illness who see a new Doctor or get a new test, get a new diagnosis, then put all of his or her hopes and dreams into the treatment for it in hopes of finding a cure. The results of the Tri-Mercury Test from Quicksilver Scientific put me above the 90th percentile for both types of mercury. A person with mercury toxicity can display a variety of severe neurological and other symptoms. In time I would learn that he or she often has concomitant infectious, gene expression, nutritional deficiency, and toxicity issues. Although the speciation ratios of the Tri Test showed that I would need to work on kidney and liver detox pathways to make any progress, I was hopeful that I had found my path to recovery by detoxing mercury. I started the Q Group on Facebook to find like-minded individuals who believed in the work of Dr. Christopher Shade and that his protocols and products could fix us. It wouldn’t be until 2016 that I would discover other serious dental issues including a hidden amalgam underneath a crown! There were other significant medical challenges and treatments I endured along the way that required more expense than most people pay for their automobiles or even their homes! I just had to keep searching for answers big and small, learning and revisiting protocols when needed (as required so often) . . . and not lose hope.

Well it’s over 6 years later and I have indeed made much progress. But I am not cured yet and may never be so this side of heaven. There are just too many other issues for me to address not the least of which is living in a fallen world mixed with evil, imperfection, disappointment, and finite resources along with the Lord’s goodness, mercy, and grace. All are true!  My total cure will be in eternity with Jesus Christ. Perhaps this realization also comes for all of us as we age and the aches and pains no longer go away? Regardless, there is more to life than what happens to our flesh for those of us who believe in Jesus Christ. He is our ultimate hope and salvation from the consequences of sin in this world, among which is chronic illness. We can live well with chronic illness, even around it.  (That includes seizures by the way).

Nonetheless, the Quicksilver Mercury Detox Group and especially my Co-Admin, Marcia, and QS Practitioner Chris T who came alongside this effort early on, have meant so much to me. I can’t even number the times that I was very sick in bed with my head seizing to and fro, only to get the strength to check my phone for messages and find one from a member of the Q group. You needed hope and answers on a Tuesday, in the middle of the night. Sometimes you needed a nudge not to be a bully or a spammer; other times you were so anxious to find answers you nearly alienated yourself right out of the group! We tried to be patient and fair and understanding and helpful. In requiring a steady hand to reach out to others, your posts kept me alive at times. I hope I did o.k. Being an Admin of the Q Group gave me another purpose beyond my own survival. And I re-learned how to care for people again after losing my profession of 29 years. Surely my efforts weren’t perfect at times. Marcia and I had to play good cop/bad cop at times to calm the ruckus of some hurting members or compromise to come to an agreement between ourselves as Admins who met through this group. The membership grew just the same! People got well. We watched all of Dr. Shade’s webinars, built up our Files of resources, and tried to keep up on the latest QS products and protocols as they expanded from mercury detox to all aspects of recovery and wellness. It continues to be a tall order for sure.

An important point that I learned was that people from all walks of life worldwide have similar struggles. We all want to be well. We all have a tendency to shortcut the process because any amount of time in our lives spent feeling sick is too long. We ask “Dr. Google” for answers in addition to a number of Practitioners who we hope will help us and not harm us. We get angry or discouraged when either of them fail us or the process is either longer or more complicated or more expensive than we anticipated. But how could we have set expectations on a subject about which we knew little beforehand? Things are rarely what they seem, eh? Perhaps it is part of the human condition and especially the culture of modern societies to want it now! And what is “it?” It’s usually more than mercury detox as we want ALL of our problems to go away, especially this one.

I submit to you that the journey of recovery from serious illness is not only worth taking, it’s worth the struggle. For it’s in our struggle that we can learn who we really are, our strengths, the nature of the people around us, and what is really important in our lives. In this regard we can almost see our illness as a type of gift: one we would never ask for but one that will give us more than we could have ever imagined. Even our suffering, in the losses that inevitably come in the form of time, relationships, jobs, pain, status, finances, physical abilities, emotional trauma, and more can be worth the gains in our character, our resolve, our coming to understand that we can depend on Someone, Something greater than ourselves Who will never leave us or forsake us. We will not get through a serious illness successfully if we are alone or bitter or defeated. Getting to a place of internal victory as our world seems like it’s falling apart externally requires supernatural strength. That strength comes from the Giver of Life who loves you so and grieves your illness along with you (ref Romans 5:3-5). I have come to know His name as my Lord and Savior, Jesus Christ. You can learn more about Him by picking up a Bible and starting to read in the book of John. I hope that you do. Please contact me if you would like to chat more about what a personal relationship with Jesus Christ can bring.

Finding renewed focus and strength in my life as unto the Lord has opened up new opportunities for which I am exceedingly grateful. It’s not that my recovery from serious illness is over yet. It isn’t. Perhaps I have a better understanding of my limits and needing to re-focus what energies I do have in other areas of my life than on my role as the founding Admin of a large mercury detox Fan Club on Facebook. I’m letting go of some limited volunteer work at my community park as well. I do so humbly with massive gratitude for all that you who have chosen to follow the Q Group have given me just by being there. You trusted me and Marcia and Chris T and others to help you, to support you. I hope we did our jobs well as fellow sojourners and unpaid volunteers! Please forgive me if I fell short.  I will be contacting Marcia to problem-solve how to proceed before officially leaving the group then post an update to this blog post below.

You all and my Gentle Readers here at New Hope Beyond mean so much to me. Thank you for the opportunity to spend some time with you. To God be the glory for the good that has come from my time in the Q Group, my story, witness, failings, knowledge, experience, and now pointing each of you to the ultimate Admin: the Great Physician, the Lord Jesus Christ. He will see each of us through it all, of that we can be sure. JJ

UPDATE: On March 19, 2021, I announced my leave-taking from the Quicksilver Mercury Detox Group on Facebook. It’s been an honor to serve you. Godspeed one and all! JJ

Another Direction Has Begun

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In this series of 1, 2, 3, and now this 4th blog, I share the pain and agony, arduous process of desperately trying to find hope through yet another medical crossroad. The discovery then extraction of an infected tooth was akin to placing an entire 8 years of battling a serious illness into a 2-month window of broken shards of glass. The infection was discovered on March 16th and the first surgery consult on April 11th. The second surgery consult resulted in the surgical procedure on the same day of April 22nd. Two treatments with IV ozone BEFORE the extraction showed promise to end my worst symptom of convulsive episodes however the gains lasted 3 and 2 days, respectively. Then there were horrible complications after the tooth was extracted. The 3rd treatment with IV ozone yielded 4 days of reprieve and a considerable reduction in pain and inflammation of the gum tissue below tooth #19. We are now optimistic for what the 4th treatment will bring later today. I have had more better days in a row after the 4th infusion than in the past, well, very very long time!

It really looks promising that another direction towards healing has begun. It really looks like the extraction of two other infected teeth in 2015 then the craniomandibular treatments in 2018 are related to the current dental issues: they all relate to the innervation and bio-mechanics of the trigeminal nerve complex, particularly on the left side of my face. I suspect that there may be a vestibulochoclear component as well since certain noxious sounds can trigger a neurological event. Infection leads to inflammation; suboccipital constriction from the trauma of repeated seizure attacks clamps down on those inflamed nerves. Ongoing inflammation of the cranial nerves, including the vagus nerve, keeps me on edge and from getting well. The visit in Indianapolis tomorrow will include an osteopathic evaluation and treatment in addition to 10-pass IV ozone. Tis time for my entire cranio-sacral rhythm-and-function to calm the heck down, get straight, and fly right!

Did I tell you about the garden bed we were able to put together this past weekend? My body hurt like heck yet my spirits were lifted as I pursued one of my life’s passions: all things gardening. How poetic for me to be planting a new garden bed in the spring of this year, just when my body appears to be springing to new life? God is so good, Gentle Reader. He does sprinkle His goodness here and there even on our worst of days. And this past week we had a down-pouring of it, literally! The day after Steve and I pushed to get all of our veggie beds ready for planting, the heavens opened up with a day of soaking rainstorms. Like washing everything clean. Like nourishing the dirt for the newness of life to follow. Like paving the way to bloom where one is planted . . .

I’m good with all of that for sure. JJ

The things we do for some sun

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We’re home from our whirlwind trip to Florida that almost didn’t happen so soon after being diagnosed with new gut issues then battling the flu followed by it’s aftermath for 2 weeks thereafter. We did it anyways! Four long days of driving for 3 days in the Sunshine State. Here was our itinerary:

4:00 pm January 9th decide to pursue reservations and plans to go to Florida; finish seemingly endless packing, food and other preparations.

2:00 pm January 10th: Elle pup is the first in the truck as we depart Huntertown, IN for the campground south of Atlanta. Arrive around 2:00 am.

1:00 pm January 11th depart for Seminole, Florida. Arrive around Midnight. Set up our campsite at Bickers RV Park.

My mobile clean room amidst the palm trees!

9:00 am January 12th was Steve’s first day of the USCA Annual Meeting. I rested from various convulsive episodes en route and travelling.

6:00 pm we make our way to the banquet at a seaside restaurant. Had episodes later yet I was grateful for a dinner out with my beloved Steve.

8:30 am January 13th: Steve heads out for the wrap up of the USCA Meeting, lunch, and paddling 6-man outrigger canoes on the ocean. Great fun!

11:00 am My day begins with self care, laundry, doggie care and some time sitting outside. Some restoration begins, however convulsive episodes persist at night. Make pre-planned dinner anyways and prepare for appointment tomorrow.

10:00 am Appointment with Craniomandibular Specialist, Dr. Ralph Garcia, for adjustments to dental appliances. Begin to question where the 80% improvements of last year have gone? Drop off thank you gift to a friend, lots of driving in the Tampa area, and fit in a 45-minute walk along Clearwater Beach before returning to the campground. Even 60 degree weather could not keep us away! Episodes were discouraging to both of us later that night.

11:30 am Pack up and depart for Chattanooga, TN. Arrive after midnight. My Nissan Frontier is a workhorse yet requires stops for gas every 110 miles! Elle pup made the entire trip nicely.

1:30 pm Pack up and re-winterize Camplite for our return to freezing temps back home. Depart for Huntertown, IN by way of Nashville.

3:30 pm EST meet up with Steve’s sweet daughter, Rebekah, for early dinner. Ramp up of convulsive episode at older Thai restaurant prompted me to leave, scramble to the truck, and take some Prednisone. Episode resolved (meds prevented further episodes later on this night), so we head to Panera Bread across the street for a nice visit. Got back on the road around 6:00 pm.

3:00 am arrive home and start unhooking the travel trailer, unpacking, decontamination procedures, urgent laundry. Grateful for the ability to do all this work on a short night of sleep followed by long days of travelling. The Lord added His increase once again!

5:30 am: heading for bed with prayers of gratitude for safe travels, the Lord’s provision of this trip, some sweet moments, and fewer symptoms between us of the flu/cold that began 3 weeks ago. I’ll spend the next week cleaning the Camplite, doing laundry, restocking, and reorganizing as required when camping in our “mobile clean room.” Maybe I’ll get to finish 2 sewing projects for the bunks soon too?

How amazing it is that I got to go to Florida! “Warm sunshine” is very therapeutic as is getting a change of scenery. Yeah God! I love travelling with my Stevers. My heart is filling back up again . . .

Something old, something new

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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

 

But the old friend has no name

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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