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

Puffy white clouds and 5 sparrows

 Are not five sparrows sold for two pennies? Yet not one of them is forgotten by God. Indeed, the very hairs of your head are all numbered. Don’t be afraid; you are worth more than many sparrows.  Luke 12

At first it looked like a gentle breeze flowing through the branches of the variegated dogwood bush outside our bedroom window.  Puffy clouds drifted past the backdrop of the truest “sky blue” you could desire on an early summer afternoon.  Such a simple scene, peaceful too.  Then again the rustling appeared to come from below my view.  Was there, wait, yes maybe there’s a little critter in there moving the branches about?  And lo there she was:  a lone house sparrow spritely jumping about within the leaf cover in and out of my view just a few feet away.  Better not move a muscle or I might disturb the work of my feathered friend.  Does she know that I could almost reach out and touch her marbled wings if the screen window didn’t separate us, didn’t provide secluded freedom for your Saturday play . . .

The little one flew away as my gaze returned to the light blue walls next to the bed inside the window.  Maybe if I waited just a little longer another visitor would appear?  To my delight the green-with-white birdhouse was rustling again from the top, the bottom, and even just beyond my view!  Let’s see:  there’s one, two, three . . . a fourth appeared and darted deeper into the cover of leaves as a fifth little birdie perched right in front of me too.  Silly little one.  He began preening his ecru-colored chest feathers without a care in the world as the branch bobbled up, down, and all around.  He reminded me of my brother’s childhood parakeet, Perky.  How they flex their necks so steeply to reach the soft feathers that form a collar of fluff I’ll never know.  Such a curious, skittish, carefree creation indeed.  Then in a matter of a few seconds, they all flew away . . .

I was alone again.  Maybe I could try to move my head and adjust the comforter covering my chilled shoulders?  Yes, that’s good.  But to move my legs and arms was not to be just yet as my attempt to do so triggered another mini seizure attack episode.  Sigh.  I thought I would be recovering by now.  Not so.  Oh well, when my husband comes back I’ll ask him to bring me the lunch I had made myself earlier and put into the frig in case we were to go out on our tandem outrigger canoe this afternoon.  What a nice treat I thought it would be to have something made ahead of time that fit my special diet and tasted yummy too.  Not quite.  Gratefully it wasn’t too long before he returned to check on me, brought me the container of rice paper finger sandwiches and fed me several bites, one by one.  Then he put the bicycle water bottle to my mouth so I could sip some water and wash down the food sticking to my throat as I lain sideways on the bed.  A few bites, a long sip, a few bites, a long sip.  He has this routine down pretty well by now.  Thankfully these complete neurological collapse episodes only happen every 10 days lately.  They used to be every couple days . . .

In time my strength returned and I was able to put a pillow under my own head and feed myself.  Unfortunately something triggered a major seizure jolt when my beloved returned, setting me back again for awhile.  He was sitting close to me and I suddenly needed some fresh air from outside the window.  Stevers obliged then left me alone again to recover per our routine for these sort of things.  Again I revived.  Eventually I was able to weakly get out of bed and start to put on some clothes.  That’s a nice thing to do after a shower at 2 in the afternoon.  I was feeling a little funny lying there naked rolled up in the comforter.  Oh well.  It’s the best I could do after beginning to collapse in the shower an hour earlier, struggling to dry myself off, and Steve helping me lie down as it appeared I would be falling over any moment.  Flash forward almost two hours as the episode was resolving I was grateful to be able to move my left arm again.  Looks like I would be o.k. albeit shaken for several more hours anyways . . .

Sitting outside in the sunshine helped me regain my strength.  Of course I had another one of my low oxalate snack concoctions (white chocolate!) and a refill of cool water in my trusty Summit City Bicycles and Fitness water bottle.  Little did the guys at the shop know how helpful that bottle had become when I needed a special flow-control mouthpiece to refresh me when in bed, not on the Fort Wayne River Greenway!  Maybe someday soon I’ll get back on my bike.  I am grateful to have had a test run of two miles earlier this Spring; I should be able to repeat a short ride on a better Saturday afternoon really soon, Lord willing.  How hard could it be to peddle a few miles?  Well anyways sitting outside on our patio later this afternoon with pretty gardens all around me and the sun still shining brightly overhead did me a world of good.  The puffy white clouds still filled the sky and I could hear sparrows, robins, and more in the distance.  I got up to pluck a few weeds, pick a few radishes, tinker here and there before returning into the house.  Perhaps my beloved would understand that this day would be better spent at home than paddling on a lake somewhere?  Change of plans.  Enduring these kinds of afternoons together makes it obvious what we should do, more than words can ever say . . .

The rest of the day was decent as I prepared a nice dinner and some food for tomorrow in case we are able to reschedule our outing on the water together.  I do try to be hopeful, eh?  As most Gentle Readers would recognize in this blog we tend to live our lives over here a bit spontaneously:  making plans more at the last minute, in the afternoon or evening, and after checking the weather report/Julie’s snack supply/whatever we can reschedule to be able to get away . . .

This evening?  Not so nice.  We are just not sure what is going on with these wretched evening episodes again.  After a full year of 1-3 hour episodes virtually every night after dark and up to 30 minutes most mornings, you would think one of these specialists I’ve seen would have figured it out!  Yes, my melatonin level is off the chart and melatonin levels change at night.  I am getting out in the sunshine just about every day, exercising at night, avoiding foods with tryptophan (that tends to elevate melatonin) and more per my internet research on the subject yet the excess must be persisting.  (Labs to follow!)  Then my new biotoxin doctor laid a good one on me yesterday, saying that if anyone could figure out what to do IT WOULD BE ME SINCE I KNOW MY SITUATION THE BEST.  Whaaaat?  Why do you think I pursued your clinic out of State?  I was hoping YOU could figure it out!  Even my brilliant functional medicine doctor in addition to your brilliant functional medicine colleague have largely set me adrift.  Now you are saying since I cannot tolerate Dr. Shoemaker’s biotoxin protocol that you cannot help me either?  If you think I was able to figure this out would I be calling you?  Geez oh man.  Lord, come what may . . .

Back to the story of the bird in the hand is worth two in the bush OR wait a minute:  there aren’t any birds here right now since it’s after 4 in the morning!  Yes, I’m back to my late night schedule again.  Let’s see . . .  perhaps Luke 12 can remind me that just as the Lord provided me a sweet distraction of His delightful creation in my time of distress, He cares for me and for Steve in our times of distress too.  He has provided for our needs despite the incredible expenses, sustained us during multiple special events when extraordinary measures were needed to keep me as safe as possible, and granted me the time and space to get well when I cannot work.  I am grateful for my incredibly loving husband, a pretty home and gardens to enjoy when I cannot go out, and sparing of my abilities to think take care of my basic needs.  Sometimes I need to wait for the Lord’s timing on some of these things which is o.k. too.  I have learned to appreciate blessings in smaller packages with gratitude as they present themselves each day . . .

So I choose to take to heart His statement, His promise to care for all of the details of my life.  He knows all about what is happening over here and desires for me to be courageous, not afraid.  He has laid it on my heart that He has a plan and a future for my life (Jeremiah 29:11) and that nothing will separate me from Him or His will (Romans 8:38).  I get this.  Perhaps it’s why I don’t spend as much time crying anymore when the wretchedness comes.  Instead I’ll say,

Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.  Romans 5 (ESV)

With the lightness of heart shown to me by my Creator God this afternoon in my time of need, I’ll take the last word of the paragraphs granted by His grace and noted above:

This new day will come anyways, and no matter what may come or others may say, I will find a way to play with lightness of heart in celebration of the One who goes before me and will never go away!

Thank you Jesus for your Word, for your gift of words.  Thank you for helping me get through that to which you have called me and should any good shine through may it be for your glory Lord.  If it is your will I ask for your healing mercies and a time of blessing.  I lift up my husband (Steve), and my brother (Mike) too for your anointing and blessing.  If there is anything hindering our walk with You, please guide us, restore us through your Holy Spirit so that we may delight in sweet fellowship with you all of our days.

In Jesus’ name I pray.  Amen.

HouseSparrow