The Lie that Never Sleeps

Not much over the course of a chronic illness wreaks havoc on your ability to cope, like discouragement. For me this came on Christmas day of which I spent half of sleeping or passed out. Was it from too much spiked eggnog? I think not. Succumbing to unconsciousness is involuntary in the “post-ictal” period of a convulsive episode. Yes, still dealing with that Gentle Reader along with the familiar foe of discouragement. At least the latter dynamic doesn’t stick around very long anymore.

February will mark a full year since the discovery my lead toxicity per bone lead testing. Most sojourners of chronic illness venture at some point into testing for heavy metal toxicity. I did so in 2013 via blood, hair, and urine testing from a few different companies and ordered by a few different Doctors. Chelation and detoxification protocols subsequently yielded impressive reductions of both kinds of mercury without a significant correlation of improvement in clinical symptoms. I returned to the detox protocols periodically over the past 10 years; having clean binders to use when exposed to a new toxin in my environment has been a very helpful tool to have and process to know. I am grateful for the knowledge and experience.

Flash forward to earlier this year when the Lord showed me that I had been exposed to lead in my childhood and that this might be something to address specifically. I would come to understand that blood testing for lead shows acute or recent exposures, not ones from years ago. Only bone lead testing will show latent exposure and the body’s way to deal with it is by storing Pb in one’s bones. So where or how does one get this tested? My research yielded two places to contact in the United States, one at an integrative medicine clinic at John Hopkins Hospital in New York and another possibly by researchers at Purdue University in Indiana. The latter had tested children poisoned a few years ago in Flint, Michigan and West Chicago but would they test me? I contacted an Assistant Professor from the bio of his published research which led to an email, a phone call, and a long car ride to his laboratory in West Lafayette, Indiana. Dr. Aaron Specht had one of the few handheld XRF Fluorescence devices in the country and offered me pro bono testing. What a fascinating experience!

My bone lead was high. Bone lead can be elevated for many adults of Baby Boomer age and older from marked exposures in the environment of our childhoods: leaded gasoline and paint. Lead was removed from both by the 1970s but not before wreaking their havoc on the generations poisoned by them. An Aunt recently told me that we were likely also affected by pollution from steel and manufacturing plants in what is called the downriver area of Detroit, not many miles from where we all grew up. But the kicker for me was the home of my childhood. Every day from birth until I went away to college was spent breathing secondhand smoke. Cigarette smoke contains many toxins, not the least of which are lead, cadmium, arsenic, and mercury. (Further mercury toxicity for me came from a mouthful of amalgams and weekly consumption of tuna fish!) Then there were about three years when my Dad and his teenage employees used lead solder in our basement for his business rewinding slot car motors. I remember watching the smoldering lead up close, playing with the rolls of lead, chasing mixed metal shavings with magnets, and thinking nothing of it at the time. No one did.

My Dad was diagnosed with a psychotic disorder, likely Schizophrenia, Paranoid Type, during those years in the late 1960s. He would later contract Parkinson’s Disease. We don’t have a family history of either of those; both can be correlated with heavy metal toxicity in the research literature. My Dad’s longest employee, a teenager named Billy, also developed a psychotic disorder but it was shrugged off at the time as related to his drug abuse. Probably so. He later committed suicide. Flash forward a few decades and I am the only surviving member of my immediate family who all lived for years in that house, all deceased due to various medical conditions. I still wouldn’t make a correlation for me between heavy metal exposures and serious health issues, even with an objective finding of high bone lead, until the Lord showed me a timing clue: the Convulsion Disorder started around the time of menopause and a diagnosis of both osteopenia and osteoporosis. I was losing bone with the drop in estrogen associated with menopause; lead displaces calcium and is stored in the bones often for decades as the body’s own protective mechanism. Studies have shown elevated bone and blood lead for women with certain difficulties during all stages of menopause and this can include onset of seizures.

Shortly thereafter I began a course of chelation with various types and forms of EDTA. Turns out that after some concerning side effects that I would need to switch to calcium disodium EDTA which Dr. Charles Beck had compounded for me. After 6 months and consultations with several different Doctors, I was still struggling. “It can take a year” they told me, for the natural process of bone re-modeling and chelation to make any difference. Then I remembered a compound I had discovered in 2013 that had unique properties to bind heavy metals, most notably mercury then lead, but was no longer readily available. OSR#1 had been removed from the market by the FDA despite phenomenal success forming strong bonds with heavy metals and chelating it without side effects. I did more research. One blogger said she had a legitimate source for the original compound, not the imitation supplement sold in Europe, that was now made by a new company who sold it as a water purification product. Downside: it’s extraordinarily expensive! The new owner of the company producing what is now called by it’s chemical name, NBMI, was a retired Dentist and former president of the major professional organization that trains dental professionals in biologic dentistry (aka mercury-free dentistry). I’ve been using NBMI for 4 months now and have had remarkable breaththroughs in my worst symptom: daily convulsive episodes after eating a full meal. Holy cow, a real and welcome change at last!

So Lord willing in February, my beloved Stevers and I will head back to see Dr. Specht to re-test my bone lead level. Will there be change? Will there be an explanation for why I have had a series of severe side effects during the chelation process with EDTA then NBMI? (Examples: four types of mouth sores at once at the same time as two skin conditions, one of which was shingles. Yeah, December has been pretty rough.) Was there still mercury lingering in my tissues despite testing suggesting levels were low and now NBMI is binding and chelating all of it? Can the body hold lead in other tissues over the years besides bone? What is the association between convulsive episodes and eating a full meal for crying out loud? Could lead toxicity and possibly lingering heavy metal toxicity in general explain my rap sheet of literally 200+ diagnoses over the past 13 years of serious illness? In truth, I may never know the answers to any of these questions. The setbacks are incredibly discouraging, disheartening, devastating. The road to recovery or some semblence of it just seems to get longer with more potholes. The “ROUGH ROAD AHEAD” sign seems more like my experience than anything else. But as long as it’s not the “ROAD IS OUT AHEAD,” there is hope, right?

Forgive me Gentle Reader, for this long blog and update of sorts. If you’re still reading this, thank you and I want you to know that I haven’t given up yet and neither should you! Please don’t give up on either of us getting answers when it seems like one more thing is going wrong. Neither of us is at the end of our road yet, right? The road very likely can be repaired or go a new way instead that ain’t all bad. As long as we can do a little that is good each day then a little is what we shall do. We’ll do more when we can as unto the Lord. As long as there is a little hope for a better tomorrow then going forward with a positive expectation for same is what we shall do. The God we celebrate on Christmas day is the symbol, author, and Master of the good that is to come for those of us who believe that Jesus came to save you and me. We shall overcome the discouragements of this day, this life as promised in His Word. Get with Jesus and let the leading of the Holy Spirit see you through it all. He loves you so Gentle Reader. Always. JJ

suicide, discouragement, Christian, Jesus, God, Chronic illness, lead, toxicity, heavy metal, mercury, testing, bone lead, Lord, faith, hope, Romans 5

He knew

Still in shock from the news, with tears coming forth without notice

I grieve the sudden death of my brother and all that it means.

Where do I begin to tell the story of his life and mine intertwined?

I just can’t write very well right now.

One dynamic is clear though.

Just before he died, he had come to know and convey despite horrific suffering

That life in Christ is worthy of our primary focus. It supernaturally transcends the incredible chaos of our time whether it be in our own broken frame or the society at large.

I don’t think he lived this belief out perfectly in all areas of his world. But in conversation with me, his witness was clear: LIFE as in LIFE IN CHRIST is the most important matter of our days.

With this I find it curious that his final words to his companion and caregiver of many years were, “I don’t want to die.” But Mike, to live is Christ, to die is gain (Phil 1:21), ultimately to be with the Lord and perfectly whole. Why did you not give in to death when in a coma, when seizing, when facing searing pain and be truly free? No one would know and no one would blame you for letting go. You didn’t even do so until the Lord called you home. I am seeing in you this gift of perspective that I have not been able to realize in my own time of battling serious illness. You got it right! I need to get it right too.

Thousands of waking seizure attacks have ravaged my body over the past 8 years. The health complications that came along the way have brought much grief, guttural cries out to the Lord for relief. Experiencing my brain on fire when I am still awake has brought traumatization, triggered memories of past incidents of trauma, stirred emotions that took me down, down, down. If there was lingering bitterness from the abuse of my past then it had no where to go to heal when every month it seemed, there was a new medical problem/diagnosis/treatment to consume my days. Sure, I tried to live around the compendium of illness; weather sick or faking wellness, I see now that my focus has been in the wrong place too much of the time. I need more of Jesus Christ and less of everything else NO MATTER WHAT IS GOING ON AROUND OR WITHIN ME.

I have struggled to read my Bible and pursue even passive activities that can strengthen my relationship with my Savior. It’s been really, really hard to do so. Somehow my brother Mike figured it out despite his suffering. He could only use one hand! His body erupted into violent spasms without warning. The simplest of self care tasks were laborious beyond belief. He has been bedridden for most of the past few years. And the pain. I don’t know if anyone really knows how much he endured, how much medication or cigarettes it took to numb the torture of severe contractures from a stroke about 5 years ago then subsequent medical mismanagement (or minimal management). So did he talk about all of this with me? NO! He chose share what he was studying in his Bible instead. He asked me important questions that I was barely able to answer. Mike meditated on the significant issues of life itself. He saw beyond the life his broken frame, not wanting it to end despite his suffering. Mike dwelt for hours each day in the presence of our Lord and blessed me in return by his doing so.

Mike really did not want to die. I get the sense that it was because he wanted to be here when the Lord returned in glory for His church. Mike thought he would be here for the rapture. Sometimes I think that I will be here for the rapture too, and that it might not be far away with the absolute chaos going on in our country. Despite my own faith in Jesus Christ, many times I have wanted to die. I have been overcome with despair, enough so that I could not imagine living another day with my own suffering (described here many times, portrayed on my YouTube channel). My faith has wavered at times when challenged by the worst ravages of chronic illness. I am not proud of it. This is important to share however, as I know that I am not alone. Tis better to bring these issues to the light of day in the right way at the right time. Now is that time. My brother’s witness to me that I finally got to see in his passing from this life is a proverbial fork in the road for where I want my life to go from here. I got this perspective from you Mike. Thank you. You have finished well, the task of ministering to your older sister whether you knew or not that you were doing so.

Thank you my dear brother in Christ. On Friday you told me that you knew that one day you would be healed. That prayer was answered just one day later! I rejoice that you are now leaping like a deer on high places as you dwell with our majestic Savior in the heavenly realms. See you one day when the Lord calls me home too. Until then,

Heyyyyy Mikey! I love you. JJ

Never Give Up

The pattern has repeated itself so many times that I do not know why, in my humanity, that I am still here. There must be a God.

When suffering exceeds the limits of the human frame, or so it seems, then there must be more holding that person together. There must be a God.

Satan will use every and any negative emotion, event, infirmity, mental game, situation, deficit or even excess, pain, memory, experience, high or low to attempt to separate us from our Creator. When he ultimately fails, we know there must be a God.

Our worth has little to do with what others think, do, or say once we come to know Who knew us from our first moment of life. As this transcendence to seeking others to seeking God becomes real, we will understand that God has a personal form.

What that personal God shows us in His mercy and grace, speaks to our hearts in a way we can know and feel, so that we respond in submission and an eternal embrace. The love and acceptance you will find therein comes from Jesus Christ. He becomes not only THE God but YOUR God.

We are stewards of what happens to us just like the stuff that is given to us to use in our lifetimes. And if your journey like mine has included chronic illness, we still have a stewardship responsibility to use what has been allowed in our lives for some greater good. Yes, even the bad stuff. Use it to point others to the hope you have in Christ. What has He done for you? For what are you grateful? How did you overcome the grave marker of despair? How did you come to understand that the Lord is not Santa Claus and that bad things happen to good people in a fallen, imperfect world? And how did you become o.k. with all of that?

So what then about the meme above? What if others judge you anyways no matter your “testimony,” mock you, and really don’t care about what message you have to convey? You have to live your life anyways in concert with the tri-une God who will never leave you or forsake you. What He thinks is what matters most! His Holy Spirit will guide you along the way, take your prayers to the Father and let Him help you to know that Jesus Christ is real and really God. Oh and especially reassuring is that He will make all things right one day, maybe soon.

I write these thoughts as I sense gradual breakthrough coming in my battle over a horrific illness these past 8 years. Improvements are lasting more than a day. Treatments are starting to work and I can do some things that I enjoy at least one day per week. Sleeping is more restful for at least one, 4-hour segment with at least one of these during the nighttime where it belongs. The convulsive episodes are more consistently less intense, shorter, and sparing of at least one day per week. I am somewhat less reactive to more types of noxious sensory stimuli. Progress is not perfection but I gotta shout out that this time for me there are clear improvements in my life as a whole.

I knew a young bride some years ago as her wedding got closer, who faced the frequent harassment of an overbearing mother-in-law. Her own mother taught her a simple technique of taking the verbal assault as if they were splashes of water. The young lady learned to let those splashes of water run off of her like water on a ducks back, exclaiming in her thoughts, “QUACK! QUACK!” The little internal laugh of such a silly technique has actually helped me shed the critical remarks of others many, many times. With the COVID-19 pandemic, I have had several folks claim my conservative views were due to my health problems. No one cares about my Master’s degree nor extensive work experience in the health care field. I get shot down as one of those with a “compromised immune system,” probably o.k. to let go, to get sick, to die. Seriously! Or I am not someone whose opinion counts about anything important because I am not important. And that is a LIE. QUACK! QUACK!

Just don’t give up Gentle Reader, k? No matter what gets thrown at you or thrown against the walls around you, keep going. Lean on the Lord as the person of Jesus Christ to provide supernatural strength and wisdom. Dig into His Word if only for one verse at a time. Cling to it like a lifeline! These are crazy times indeed. Regardless the God of the universe has overcome it all!

Belief in the Lord Jesus Christ may just change more than your own life. JJ

1 John 5:4

For whatever is born of God overcomes the world; and this is the victory that has overcome the world—our faith.

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

The Turning Point

When you start to leave hell, it’s important to take stock of where you have been and where you are then leave all of your baggage at the turning point.

Hi Gentle Reader.  This is my gentle wisdom to you as I gratefully and graciously turn the corner after 3 years of wretched illness.  Much grieving has already gone before me and my beloved Steve.  Much loss has already pruned that which is no longer critical to our lives.  Much angst at our Lord’s merciful throne of grace has established Who is most important in our lives and that He was leading us through all of this.  Much dashing of hopes in false turning points along the way has produced endurance for what appears to be the last leg of this race.  And yes, much joy has returned despite the jagged line that is normal in the recovery phase.  That’s o.k.  WE HAVE HOPE!!!

Briefly, I am experiencing 50% improvement in my health after beginning treatment for very high mercury levels.  This process will require a slow titration of chelating agents, detoxification with the gentlest of methods, much rest, and humility.  Humility?  Oh yeah, humility to stay watchful for the Lord’s leading each step of the way and to continue to lean on Him as my own strength returns.  My husband has proven himself again and again as the Lord’s instrument, a capable spiritual leader in my life.  I have many examples in my life how pride has gone before my downfall, you know (Proverbs 16:18).  I don’t want any more “slips and trips” anymore particularly of my own creation!

As I have started to feel better and do more my devotional time has diminished.  This is not good.  So in response to this turning point, I aim to spend more time in the Word than I have in the past when feeling reasonably well.  I aim to keep practicing gratitude:  holding lightly any material blessings, fruits of my labors, times of fellowship and the like.  I aim to smile more and complain less.  After all, I faced death many, many times!  These days the gift of  time and space, my talents and gifts, and the people/places/things around me are a bonus.  I have never believed that I deserved either the good or bad things that have happened in my life.  They simply “are.”  They simply “were.”  It is with great wonder that I aim to explore each day for what may come.

How can anyone really see beyond a turning point anyways when he or she has never been on a given journey before?  If we worry about it then we have chosen to believe a lie.  No one knows the future so why make up something bad?  Why not something good?  I aim to squelch what is false with what is true from God’s Word:

33 But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.  (Matthew 6)

Nuff said.  Steve and I enjoyed a long walk in the rain this evening with our pup.  This picture portrays my heart inside.  God is good.  All the time.  God is good.  JJ

God is good.  All the time.  God is good.
God is good. All the time. God is good.