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

The Whole is Greater

The whiskers on a dog’s snout are a curious thing. Long coarse hairs emerging from soft furry mounds or what we would call pimples if they were on our own faces, seem somehow cute. “Dog whiskers have two major functions: helping dogs understand and sense their environment and conveying emotions,” according to PetMD. These are so important in a dog’s life that removal creates tremendous stress, alters sensory perception and balance. I can relate on how something so seemingly insignificant as whiskers are to the life of an 80-pound beast can affect just about everything in his or her life should it go awry. Fortunately for Bella, all is well these days.

We rescued Bella about a year ago from the Doberman Rescue Group in Tulsa, Oklahoma. Oh we tried to find a Dobie closer to Indiana to adopt but things kept going awry literally the day before picking up some seemingly sweet pup. One adoption agency hadn’t vetted their dog’s behavior when the foster, who happened to be a Dog Trainer, wasn’t present. Zora attacked a Veterinary Technician during a visit to get her shots updated the day before we were scheduled to pick her up! Well that wasn’t going to work for us. Another Dobie Mix was uber friendly in multiple videos of her at events hosted by the adoption agency. We didn’t find out until the day before we were to pick her up that she wasn’t friendly with other DOGS though, just people. Holy cow. Our home is in a court with small dogs living in the house on one side of us and a German shepherd puppy on the other side of us. That just wouldn’t work for us or the dog either.

Isabella had lived for 8 months in an 8 x 10 foot kennel in the country of northeastern Arkansas. She had been surrendered at one year of age by her former owner then fostered by the Doberman Rescue Group. We met her foster Mom, Michelle, who explained her routine of visiting Isabella each day to let her out, feed her, and let her run around in the fields behind her family’s property. Isabella had a friend, Mr. Noble, with whom she would race around with in the tall grass on hot summer days. She knew some basic commands and was beautiful. Her single-haired coat seemed like it would minimize any allergy symptoms that we had developed when trying to adopt a long-haired German shepherd after our first GS, Elle, passed away. We’re not Doodle people and hypoallergenic dog breeds just didn’t appeal to Steve and me. We had researched numerous breeds, watched training videos, scoured more adoption websites, talked with Michelle at length several times, filled out our application, paid the fee, and made arrangements for Steve to travel to pick up Isabella. He would stay overnight at his cousin’s home in Little Rock then schedule a meet-up at the home of a paddling friend; Michelle was willing to drive 90 minutes to deliver Isabella. Everything went smoothly as planned.

Isabella was very sweet on Steve’s drive home to Indiana. Our young pup placed her head on Steve’s shoulder as he drove for most of the day with a few stops along the way. She had an accident that first night as she wandered, quite disoriented, through the limited area of our home to which we initially gave her access; the crate training turned out to be the best method to acclimate her to her new life. We took her to the vet, changed her name to Bella, gradually introduced her to more of her new surroundings, began training, and slowly transitioned her diet to better food. Over the next several months she grew taller and put on almost 14 pounds to her current weight of 81 pounds! True to her breed, she is a high energy dog that craves at least 3 walks per day, treats, and lots of toys! She learned to pull Steve on his long board through the neighborhood, even showing off for other dogs as they whizzed by together. A year later, she is at home with us: having gone on many adventures, made friends with the pups who live nearby in addition to many hoo-mans, learned a few tricks, and become protective of our home. We love her so!

The whiskers of life, the little things or maybe bigger ones too, that distract me from the whole of all that my days can be really bring me down sometimes. I am grateful that a shiny black and brown pup often senses those moments and lays her head on my lap, waiting for a gentle scratch around the ears or bum. The wiggle of her muscular hind end with a stumpy tail characteristic of the doberman side of her lineage is just too cute for words. Her whole body wiggles with delight and makes me smile in the process. While my life really hasn’t changed much since I was last writing more regularly here (as I still have convulsive episodes most days of the week and they are crushing in so many ways) I can do more when I am more stable. For that I am grateful. I could be distracted by many new health problems and perhaps I am for a time. The whole of my life is greater than these icky parts; there is also even more to be grateful for than ever before. Bella is one of those gifts. My beloved Steve is an even bigger gift in my life. My Lord and Savior, Jesus Christ, is the greatest gift of all.

Where do you find your joy Gentle Reader? Is it enough to sustain you through the icky or smaller parts of your life? I do hope so. Life is increasingly difficult and complex these days. It just seems like there is no time to waste on things with no lasting value, pleasure, or meaning. The speed of life keeps increasing bringing both bad and good news faster and faster, requiring us to find a bigger picture that will sustain us no matter what the day brings. When I finally get going in the morning or afternoon, it is often Bella that I see before my beloved Stevers. Every day, her wiggly, stumpy tail attached to a smiling beast coming through the door and pushing up against me to let me know that I am loved is simply wonderful. I love you Bella.

Thank you Lord for the message of keeping our eyes mindful the bigger picture in our lives. Thank you Lord for all of Your good, good gifts. Whiskers included. JJ

The Aerial View

Fort Wayne, Indiana aerial photo by Steven Horney

Moving from a city of 8 million people to this big-little area of 300,000 where I live now was a huge undertaking in 2007. The occasion was marrying my Intended Beloved, Steve. The leap of faith required to do so was tremendous: almost everything in my life changed that year including those related to the death of my Mom in March. The process of grieving then leaping off into a new direction was downright painful at times. And now 15 years later can I still say that embracing Steve during the same year was one of the better decisions of my life. The Lord has blessed me so much by my beloved Stevers!

You could say that my story is like taking an aerial photo in a Piper Archer. The reality for me is that down on the ground, the highs and the lows are one dastardly beast to navigate at times. I lose a couple of days per week to a sickness that started in 2011, then rally, or rather scramble, to put my life in order on the rest of them. The stuff of life still needs to be done even when battling a serious illness. Steve does what he can to help me out, especially when I am in a crisis, but he can’t do everything. Nor would I want him to do so. A little more maybe, but not everything! We have learned the value of compartmentalization: setting aside the challenges of a given day when we need to focus on a more important task together. For example, when my care needs are significant, we cannot bemoan our latest disconnect or household repair even if it’s a painful or expensive one. Steve is the only one who can bring me a rescue remedy when I am frozen in a convulsive episode. He is gracious towards me at these times and for this I am exceedingly grateful.

Taking an aerial view of one’s life is helpful at times. Climb to 4,000 feet and sit away from the clouds, the storms of life while connected to the grandeur of the world in which we live. Dwell on the Lord’s goodness and His marvelous creation! Eventually we will land our plane back on earth but why rush things? The question becomes how to avoid crashing and burning or perhaps going crazy when the flight gets bumpy along the way. No worries! Whether climbing or descending into the various situations of our lives we must resist being bounced off-course by heated or cooled thermalic conversations, the cross-winds of life’s technical problems, static in our headset or bodily gear, and limited fuel energies. Not losing sight of the bigger picture is critical to managing these challenges. Not losing sight that the Lord our God is in charge of it all is critical to overcoming these challenges. He has a flight plan and will reveal it to us in due time for He IS the pilot in command!

It’s only with a longer view fixed on Jesus Christ that we will come to understand that what we may label as a detour is actually the best course after all. I need this reminder this evening. There was a nasty fire in the cockpit so-to-speak of our evening that was so bad, my co-pilot in life had to care for me like I was an invalid. I wept in between bites of food that were difficult to chew even cut in small pieces and fed to me with a spoon. I was that weak after yet another violent convulsive episode. The repairs and mold remediation going on in our home for the second time in 9 years somehow triggered the collapse. On one hand I grieved that this hell on earth was still with me, still with us. On the other hand, I was grateful that I had a choice of rescue remedies/treatment strategies plus a skilled caregiver who knew what to do to help me. These took many years, many “flight hours” to develop. Steve is an experienced and capable pilot. The episode lasted a couple of hours before I had the strength to safely get out of bed. By the grace of God I finally got to the bathroom. By my Lord’s power the nightmare ended.

I am now awake and alone well after midnight as I write this tonight with many questions and few answers. Evidently it is still not my time to recover from this serious illness nor to die from it either. I do have some more, new treatments that are promising; they are enough to pull me through the turbulence at times in my own aerial view. There is so much goodness beyond my bed of sickness that I do get to enjoy these days at least once per week. And ultimately I have the hope, the peace that comes from His promise of a glorious life beyond this one in eternity with my Lord and Savior, Jesus Christ. In fact, it has already begun . . .

Would you like to have this hope too Gentle Reader? Jesus Christ is more than the best pilot around. He is God! Entrust yourself to no other really. JJ

Holding on for the Win

As if losing 2 dogs within about 5 weeks time wasn’t hard enough

Our hearts just hurt with the passing of Elle then sudden adoption of Luna.

Only the Lord knows both the desires of my heart and my heartaches to date.

He has walked with me when lungs gasp for air, the body seizes, and screams erupt from within.

My beloved has seen it all as well, taken it in, stood by as best he could albeit weary from the road.

Then Steve pegged the improvements between dogs, setting me on a hunt for answers

I found them or so I think. It explains so much. Even my genetic testing confirms the link.

Will I really recover from the histamine intolerance and DAO deficiency that goes beyond allergy

And will these two culprits really be at the center of chronic illness for me?

Sadly, my first attempt to treat this above my exhaustive cleaning and decontamination

Created new issues as a supplement high in DAO is also high in iron, making me worse!

So back to the version recommended by my chiropractor I go, still overthinking this all

Just a day later the headaches, pain, seizing, irritability, nosebleeds, and more are coming down AGAIN.

What a nightmare this journey has been! Will I ever get to “The Station” as Dear Abby once shared?

If I get there will I recognize Just Julie or the shell of my former self? I digress once more.

Really I hope someone new comes forth from this suffering. Or perhaps she is already here?

For alas there is always purpose to our troubles, for those in Jesus Christ, who believe in His sovereignty.

No matter what happens, Gentle Reader, He holds it all tenderly in His strong hands. He does.

Choose to trust that there is something more for each of us in this life or beyond,

That’s where we all will win, you and me both. Honestly, what else ya got anyhoo?

JJ

Where do you go?

Where do you go when what was good is now bad and what was bad is now commonplace,

When the meaning of words is twisted or the prose is outlawed altogether?

Where do you go when your spirit is disquieted, there is no where that feels safe,

When you cannot trust your body to get you there even if you knew where that was?

Where do you go when fear-mongering is the top headline every day

When there is no place for discussion much less public or private debate?

Where do you go to share your pictures and news and questions and art

When social media has become the Big Brother of an ever bigger government?

Where do you go when your losses outnumber your wins and

You just don’t know when or if either one can come back in any form?

Where do you go where the customary habits of hygiene and socialization

Are so altered by an unforeseen enemy they can’t even objectively identify?

Where do you go for human touch, to connect with loved ones

When there is no room for them even when dying in a hospital bed?

Where do you go for wisdom, for light in the darkness, for hope of a better day

When all you can see is madness, anxiety, fear, doubt, and dumbing down?

Gentle Reader, you go to Jesus Christ

His throne of grace is mightier than

Any trial or tragedy or evil we may face.

Go now. Our very eternity is at stake.