A new answer to another question I did not ask

Life never ceases to be an adventure if that is the perspective you choose.

Perhaps an underlying theme of the Hope Beyond blog when it began would have been, “the plot thickens.” Or “deadens.” Flash forward about 7 years since my first blog in August of 2012. At my current stage of recovery from serious illness and a turn for the better-but-not-done-yet, I’m going to attempt the theme of “a new adventure awaits.” How is that for positive thinking?

A little trellis project almost 11 years in the making gets completed this weekend! Yay God!

I haven’t written in awhile. Since March of 2019, there are more moments of functioning better each week and I am taking advantage of them. There are also more very long naps of which I am forced to take advantage as well! The the new direction in my healthcare of getting off of thyroid medication created some problems then had an unexpected turn when parathyroid issues were discovered. My labs in both and related camps are all over the place, making for a Peter Faulk’s, Columbo-style of in-depth investigation raise more than one eyebrow of intrigue. Could there be another causative factor to consider in the convulsive episodes, requiring its own investigation? Yes, it appears so. Sure could be possible that the thyroid nodules, albeit shrinking, hid parathyroid tumors that are additional culprits in serious illness. Both hyper/hypothyroidism AND hyperparathyroidism can explain my clinical presentation. It appears that I am dealing with both. Who knew?

Well the Lord knew all along, the factors and their purpose for a nearly 8-year derailment in life as I once knew it. I am beginning to see that everything I have learned to date has NOT been wasted. I would not be able to respond as quickly to new information if there were still dozens and dozens of other medical conditions to rule out or address. I would not have a deep compassion for those suffering chronic illness today. My faith would be weaker and very likely my marriage. I could go on.

Very few folks have had as many medical tests that I have had, even in the community of persons dealing with chronic illness. Some folks stop after medical professionals label you with depression or anxiety. And if a person persists with extensive testing, very likely it’s peppered with questionable, even dangerous energy techniques akin to quackery. Thank the Lord that I didn’t spend very much time with energy medicine. He let me see the demonic influences and/or lack of science then helped me get away quickly thereafter (e.g. Rife treatment using sound and light frequencies hurt me badly.) Other times my Jesus simply closed the door to a promising yet deceitful avenue even before I was tempted to get near it (e.g. tai chi and yoga). This was very difficult at times when I felt desperate in my personal hell or conversely, when the testing and treatments were recommended by my brothers and sisters in Christ. I simply had to decline with blind faith even if that decision appeared to prolong my suffering in their eyes. Very tough road indeed.

Today I welcome the new answers with more of a sense of adventure than fear. Will I need neck surgery if a parathyroid adenoma is discovered? We are not sure yet. My labs don’t fit the typical profile and I have been in that camp dozens of times before. But when 1) both cardiovascular AND osteoporosis can be related to both thyroid and parathyroid anomalies and 2) calcium trafficking/dis-regulation problems can contribute to neurological symptoms, then it seems logical that both would need to be addressed. Incredible. Separate body processes in which anomalies can be the root cause of disease in the 2 different organ systems. And to think that this new adventure would have never happened if I had not gone to Mayo Clinic in February looking for answers about autoimmune disease. But there is no AD. Maybe not even a Functional Movement Disorder. Just another new answer to a question I did not ask. Holy cow! JJ

Psalm 34:8 New International Version (NIV)
Taste and see that the Lord is good;
    blessed is the one who takes refuge in him.

Bouncing back, bouncing all around

It’s a good thing that the Lord is great and consistent every single moment of every single day, keeping our best good in mind when we are bouncing around a bit in life. Yesterday was a day with two of those hits for me.

I recently described a dilemma I had with a new treatment direction as I trend overall toward recovery from a serious illness. I am grateful for some better days and many more better moments than most of the past 7 1/2 years. I’ve barely grasped the significance of all of the changes let alone managed the new patterns of illness/recovery/illness and so on. The following 2 pictures from my early “birthday celebration” depict this very well I think.

9:00 a.m. after my alarm went off, back to bed then after the tail end of an unexpected/long tic attack episode, and needing to eat before taking PRN medication. I can’t control my left arm and struggle to feed myself, manage dental appliances with assistance.
4:30 p.m. celebrating at the Chit Chat Tour of social media stars Diamond and Silk before dinner along the riverfront.
JW Marriott, Grand Rapids, MI

With the blessing of an incredible local endocrinologist (that I miraculously got to see in record timing) I am free to make my own changes with new medications (this time covered by insurance, yay!). Her intervention has led to both successful and sometimes confusing experimentation. I’ve consulted with a local compounding pharmacist, prayed and landed on a plan that includes returning to mercury detox. Mercury can be sequestered in the tissues of the thyroid. I suspect that Hg is getting stirred up, even dumping as I transition from suppressing the thyroid: Docs prescribed high doses of meds for decades but an Endo at the Mayo Clinic recommends drastically titrating them down. I can’t seem to go fast or slow enough to cope with the outcomes each day. Hg as a mitigating factor seems the only plausible explanation to me right now given that I was doing so well initially then the seizure attack episodes returned. And mercury binders, minerals affecting the thyroid inversely affect the pattern of episodes. Mercury showed up again in recent blood work . . . Gratefully I have the best tools around now for both of these avenues.

I felt really beat up and exhausted as we left the house later today yet rallied for the cause of celebrating my upcoming birthday none the less. The tickets were already purchased for a show that is a long car ride away from home and my beloved Steve would be doing all of the driving as usual. It was a good decision to go. I had a really nice time with Steve. Then I took my Hg binder supps too close to bedtime and have been awake all night. Well crapolaski! (That’s Polish, of course.) This time at least I was able to get some correspondence done as the night broke into day. Crying and weeping really take the life out of you for a time, then joy comes in the mourning.

But social media stars Diamond and Silk are exactly the rescue remedy that I needed today. They are a hoot! Don’t follow this link if you aren’t open to other political viewpoints in our hotbed of political correctness in the United States these days. These sisters are polarizing! Kind of refreshing for me: a gal who has chosen to be transparent with the real ups and downs of overcoming a serious illness. The straight scoop is just alright with me. “Don’t sugar-coat it baby! That’s right!” And so is the Word from Lord, Jesus Christ, that sees me through it all. I hope He will do the same for you Gentle Reader. Have you trusted in Him no matter what? JJ


And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.


1 Peter 5:10

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

UPDATE:   Functional Med Doc says it’s not the EDTA but a mold hit from raking leaves a few times recently.  I dunno.  I continued having convulsive episodes within an hour after the sinus spray treatment and had to stop it.  Time to regroup again!

Goodness & Light

 

goodness and light, Christian, Christmas, song, Jesus, hope, humility
Photo from:  https://www.yourhomebasedmom.com/2013-word-of-the-year/

The house on a hill

The one with some land

Just can’t be true

In life without an ampersand.

It’s more like the fermata

In a musical score

Or the final bar line

Where dreams are no more.

You must look around

To the good in your midst

And find the blessings right there

Embrace them with a kiss.

First it’s my beloved

My treasure beyond compare

Next it’s my safe dwelling

The gardens, the love all in there.

Deeper still is my eternal love

The One Who carries me through

The hell of this Earth

Nothing compares to You.

Your light fills my life

No matter how it feels

With hope beyond compare

A shining city on a hill.

What more could I want

When in forever all will be well

Sing alms to my Lord now

This is a story for now, all to tell.

Goodness and light

Lightness and the good

Oh come Lord, Jesus soon

I need you to soften my brood.

Push my focus out to His love

And all comes back and it is right

His Word shines through darkness

As in the day I shall walk in the night.

 

 

 

When He is All You Have

My beloved is the best . . . but he is asleep as I bemoan my sorry lot.

He holds me close . . . until I react to some scent on his manly body.

It should have a wonderful effect . . . but it does not anymore, sadly.

Such are the ravages of severe illness . . . the kind that makes everything hay-wired.

If I could explain it to you . . . then it would be from understanding myself,

And I cannot dear friend . . . so woe are my words, this night, once again.

But not forever, all night, or after a little while . . .

For He speaks into my heart song . . .

And makes all kinda nice.

My Jesus understands for he hung on a wooden cross . . .

With nails in his hands and feet, a spear thrust in his side.

I could never endure imagine that kind of pain, even if my head banged all night . . .

Let’s just say my Lord knows suffering so His tears comfort me alright.

Even if this Doc or that hath not have the medication right for me . . .

My beloved says healing will still come and my own fasting indicates so.

I shall do what I gotta do to manage this chaos . . . even if I never leave the table by the window at the café of the health food store

Because I can’t think straight and seizures are pushing up from within:  unsafe to make my way home until I stabilize.

“Cmon my Jesus, drive me home

It’s dark already and you are all that I have tonight.”

And so He did when He was all I had.

Goodnight again.

JJ