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

Just short of maximum destruction

monster truck, women, riding, Maximum Destruction, celebrate, ride a truck

That’s me with my brother’s girlfriend catching a ride on a Saturday night as I waved to my husband from the Monster Truck ride at the Maximum Destruction show.  Although I had never ridden in a jacked-up truck before, the figure-8 track of an auto raceway not far from the Motor City is nothing new for me.  I grew up hollering and hooting during demolishion derbies on hot summer weekends in the Detroit area where I grew up.  Virtually everyone in my family worked in the auto industry, the men in my family all tinkered with their cars, and my Dad founded a company that produced the fastest slot car motors on the tracks in the 1960’s.  It seems so long ago yet the adrenaline is so easy to tap into when I hear those engines get revved up!

The racing was exciting!  The effect it had on me was not-so-much exciting as it jittered my fragile nerves.  We did make it all the way through to the trailer races on the figure-8 track at the end of the night:  battered vehicles of all types pulling various types of 2-wheeled trailers for about 10 laps around the track.  The smash-ups drew roars from the crowd and the buggy towing the large teddy bear in a row boat took home the trophy that night.  I was exhausted as my own River Bear drove us home into the wee hours of the morning back across the State lines to Indiana.  What a crazy night!

I am not sure if it was all of the smoke that seeped through my charcoal mask, the vibration of the roaring engines, sitting on those damp wooden bleacher seats, or what exactly affected me the most on Sunday.  I sure slept a lot!  Certainly any of it would have kept me home just 1 year ago.  I am doing better in many ways.  But today brought another bad convulsive episode that seems to be happening again about every other day now.  We are puzzled; I am discouraged.  The healing from the specialized dental appliances and upper cervical chiropractic care appeared to be helping to decrease my reactivity, normalize my sleep/wake cycle, increase my activity level, and overall decrease the episodes.  There were at least 2 days per week when I had no seizure attacks at all!  And now they are back.

The only possibility we can think of right now, after nearly 7 years of serious illness and more medical care than you can imagine is a hidden issue in my cervical spine.  Cervical vascular disease can give rise to traditional seizures but more in the acute phase of these issues than in a chronic phase.  When neck extension can trigger them and the episodes can include a near paralysis of one side of my body then I start to think there is more going on than some pinched cranial nerves.  Have the dental appliances reduced my symptoms 80%?  Yes, until now, they have yet I still deal with the remaining 20% every day.  Chiropractic adjustments and physical therapy  have both triggered and resolved an onset of episodes.

My medical doctor took some convincing then ordered the first of a couple of diagnostic tests after realizing that I have a family history of carotid artery  and heart disease.  I was at the race this weekend with my brother who had a devastating stroke 4 years ago due to occlusion of his carotid arteries.  For me, initial testing shows that my carotid artery is fine; it is the vertebral artery that could be most suspect as it travels around the first cervical vertebrae called the atlas.  More testing should clarify what is going on.  I often have instability or rotation at the level of  C1.  It doesn’t move correctly during flexion or extension according to specialized cervical xrays.  We have got to figure out what is going in these structures in my neck!

Today and some other days recently, Steve providing simple distraction technique of my neck eventually resolved my worst symptoms during a bad episode.  Extreme fatigue follows with an emotional release of frustration, despondency, exasperation, grief, and sorrow.  This has just been going on for so very long!  I am amazed that all of the massively destructive movement patterns occurring thousands of times day after day for years has not caused more damage to my weary frame.  This finding actually gives me hope — that if the episodes stop then maybe I can regain some physical health and fitness with with what is left of me, with the body my Lord has entrusted to my care.  Even those beat-up sedans, pick-up trucks, and other stock cars on the race track somehow keep going to win races week after week.  Just tune ’em up, sure-up the quarter panels-n-bumpers, and onto the track they line up to race another day.

Perhaps that will be me at some level too in my race called “life.”  Only I think I’ll add a little more bling to my frame than the lipstick ladies did to their jalopies during the first heat this past Saturday night.  I might even spruce up the “paint job” on my hair color too.  Next weekend (or hopefully one day soon) just might be my night to shine when the official waves the green flag to get up and go.  Surely that will be a prize worth waiting for . . . just short of the ultimate finish line in heaven.  Yes my Lord, I’m ready!

JJ

Hebrews, 12:1, run, the race, with endurance, Bible verse, race of life

The cricket in the ER

It probably would created a shocking gasp on Gray’s Anatomy if T.V. Dr. Meredith Gray saw a black cricket on the floor next to a patient’s gurney.  But there was no fanfare for me.  I just smashed it with my shoe and hopped up onto the bed, not really sure if the nurse had changed the green sheets or not from the previous patient.  Yes, I said GREEN!

St. Joe is a very old hospital, probably as old as the biggest city near where we live.  At one time they had a pediatric and OB ward however it has been farmed out to the larger campus in the Lutheran network of hospitals.  If mothers arrive in the ER in labor then they are put in a transport vehicle of some sort sent to pick her up by the staff at the other campus.  Surely lotsa babies are born en-route or in the parking lot with this crazy system!  Who ever heard of a hospital not delivering babies?  We’ll see no-mo babies any more at St. Joe, just a few black crickets to match the worn linoleum flooring.  I did notice 2 months ago however, that they finally replaced the bedside tray tables — the ones with levers that were duct-taped together!  Now that was sanitary, eh?  Er, no!

The outpatient nurse, Mary, is as sweet as can be.  Since the hospital doesn’t have their own outpatient clinic, her charge nurse assigns both outpatient and ER patients to her caseload.  She runs around the whole time I am there for my monthly appointment.  Yes, I still have my infusa port flushed every month so I use the opportunity to take in some extra fluids if I need them and have any labs ordered to be drawn at the same time.  I just bring a lunch bag, binge on HGTV, and make a day of it!  Unfortunately my appointment in the ER was a bear this past Friday.  Six and one-half hours after arriving, I felt about as much like “toast” as that crushed bug still on the floor when I left.  It shouldn’t have taken that long.  But every month, I end up hanging out with Mary for at least 4 hours for a one-hour procedure.  It’s just the way it goes.

This time, it took the first 3 of those 6 hours to determine that one of the blood work panels would require 15 vials of blood if I were to have it drawn at the ol’ St. Joe!  Maybe I forgot or maybe I never knew that there’s another lab actually closer to our home that has a special kit for this particular panel; the kit enables multiple tests completed from a few vials of blood.  St. Joe could do the panel but I would probably be billed over $400 more and not be able to walk out of there due to the resulting weakness from the drawing of so much blood.  So it was not to be; we just some other routine labs, and finally AFTER EIGHTEEN HOURS OF FASTING, I ate everything I had with me!  I should have taken Mary up on her offer of a box lunch as well.  I was sooooooo hungry!  All of this probably contributed to the convulsive episode that followed the de-access of the infusa port and an extra 3-hour nap the next day.  What a life, I tell ya!

Someday I hope to have the infusa port removed.  My Doc may be reluctant to order this procedure since it was only 3 months ago that I needed six days of IV antibiotics for pneumonia.  That was another fiasco of a story left to another day.  If only I could go to the newer hospital closer to my home this process would be less exhausting.  Can’t do that either in case things should go wrong and I end up in the chamber room of the abusive nurse in the ER who might still work there.  Better check on that one sometime:  does he still work there?   Regardless, I seem to benefit from regular infusions of fluids when Mary flushes my port at the ol’ St. Joe.  Things shall remain status quo for now.

The monthly sojourn to St. Joe will henceforth continue until an insurance denial, a swarm of locusts, or maybe even something wonderful happens first.  Something wonderful?  We can always be hopeful right?  JJ

“So I will restore to you the years that the swarming [a]locust has eaten,
The crawling locust,
The consuming locust,
And the chewing locust,
My great army which I sent among you.
26 You shall eat in plenty and be satisfied,
And praise the name of the Lord your God,
Who has dealt wondrously with you;
And My people shall never be put to shame.
27 Then you shall know that I am in the midst of Israel:
am the Lord your God
And there is no other.”  Joel 2:25-27a

A Matter of Perspective

humor, bathing suit, top, insert, perspective

Alone on the beach I lain

Broken-hearted and abandoned,

Missing my other half

A bit humbled in the warm sun.

She left me here all alone

Doesn’t she miss me or know I’m gone?

Maybe she broke free from the tyranny

Who needs a padded insert to swim in the surf anyways?

I suppose you all figured out the item in the picture by now?  I found it to be hilarious finding it on the sand of the beach at Port Canaveral, Florida earlier this month!  My beloved and I were there to witness a rocket launch a mile away to the south along Playalinda Beach.  It was surreal.  I wonder if the gal missing part of her bathing suit top felt the same way?  🙂

That day was a bit of an oasis in the middle of a medical trip that continues to change my life for the better.  I was exceedingly exhausted just 1 week after treatment began and felt out of place sitting on a sandy beach with large, acrylic dental appliances in my mouth.  I was unable to eat without changing out appliances (which meant rinsing them in a Ziploc plastic bag with paper towels to soak up the mouthwash) and was nearly nauseous with a lot of head-jaw-neck pain from the aggressive dynamics achieved by the splints.  On the other hand, Steve was geared up to hit the waves in our outrigger canoe!  We both slathered on the sunscreen and lugged our stuff up a long flight of wooden steps, over the berm, and down onto the beach.  With a big umbrella in-hand, I was going to make the best of things that 86-degree day  . . .

And so we did.  I sat in front of the most majestic view you would never find in our home State of Indiana (note new cover photo above!) munching on my lunch, brushing dental appliances, and taking pictures of the coolest dude on the shoreline.  A few hours later I witnessed the magical sight of a rocket being launched into space:  a satellite developed by the same company that Steve works for in Indiana.  Steve had gotten an inside scoop from co-workers at the Melbourne headquarters of how to get the best view.  (Incredibly Harris allowed him to work there remotely between my medical visits and before we would return home.)  The launch was spectacular!

Harris, rocket launch, Cape Canaveral, March, 2018, sky, trails, space

 

I have come to believe that the Lord cares for everything in our lives from the mundane to the big, spectacular moments in time.  He attends to every detail, crafts them for our best good.  I am thinking that many of the rewards in life generally come in some way or another when I am able to move off my limited view and trust that my Lord, Jesus Christ has a bigger plan.  It just might be a good one.  My change in perspective will help to find it.  The fact that so many years have held me captive with much agony in the past is really no predictor of what the future holds.  I simply do not know.

This leap of faith to pursue a new treatment approach 1,000 miles from home is changing my life day by day.  The minor setbacks are easier to take than in the past and don’t last very long, gratefully.  My perspective on most things in life, my expectations, my faith, and so much more have changed accordingly.  One of the sweetest rewards is sharing this  newness of life with my hero, my Stevers.  I love him so!  And I am so proud of him, grateful for him, and in awe of his strength, faith, and love during our eleven years together.  The anniversary of our first date is coming up soon!  Oh I could go on . . .

How about if I just end with another awesome sight from the beach that day.  Isn’t he just the coolest dude ya ever did see?  I love you Stevers!  :JJ

outrigger canoe, beach, surf, OC-1, carry, carbon fiber, racing, Mocke, life vest, life jacket,

My River Bear carrying our OC-1 out from the surf as the tide rolls in onto Playalinda Beach, north of Cape Canaveral, March 1, 2018

Anticipation

The plans are set, the slow ramp up has begun

The research behind me the appeal for support made clear

Now to endure the daily wrath before newness may settle in.

Another new treatment, oh help me make it to then Lord!

So much at stake if we do not win

This horrific battle of which I have hated so very much.

One thing is clear:  Who holds the future:

My Lord, my King in Whom I trust

Surely He grieves my suffering and waits with us.

My beloved is tired from the journey . . . so very loooong

Mere moments of goodness, many hours of strife

And yet he loves me just the same.

I am humbled.

Perhaps some goodness will come soon?

sunrise, path, beach, anticipation, waiting, tomorrow, sunset, summer