Tag: story

What you have meant to me

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When I started the Quicksilver Mercury Detox Group on Facebook, I was a hurting puppy. Here’s my mercury detox story as of February 23, 2021.

In 2014, I had been sick for nearly 3 years with what had become a very serious and complicated illness. You can read more about my journey here. I had fallen into the camp of persons on the earlier side of chronic illness who see a new Doctor or get a new test, get a new diagnosis, then put all of his or her hopes and dreams into the treatment for it in hopes of finding a cure. The results of the Tri-Mercury Test from Quicksilver Scientific put me above the 90th percentile for both types of mercury. A person with mercury toxicity can display a variety of severe neurological and other symptoms. In time I would learn that he or she often has concomitant infectious, gene expression, nutritional deficiency, and toxicity issues. Although the speciation ratios of the Tri Test showed that I would need to work on kidney and liver detox pathways to make any progress, I was hopeful that I had found my path to recovery by detoxing mercury. I started the Q Group on Facebook to find like-minded individuals who believed in the work of Dr. Christopher Shade and that his protocols and products could fix us. It wouldn’t be until 2016 that I would discover other serious dental issues including a hidden amalgam underneath a crown! There were other significant medical challenges and treatments I endured along the way that required more expense than most people pay for their automobiles or even their homes! I just had to keep searching for answers big and small, learning and revisiting protocols when needed (as required so often) . . . and not lose hope.

Well it’s over 6 years later and I have indeed made much progress. But I am not cured yet and may never be so this side of heaven. There are just too many other issues for me to address not the least of which is living in a fallen world mixed with evil, imperfection, disappointment, and finite resources along with the Lord’s goodness, mercy, and grace. All are true!  My total cure will be in eternity with Jesus Christ. Perhaps this realization also comes for all of us as we age and the aches and pains no longer go away? Regardless, there is more to life than what happens to our flesh for those of us who believe in Jesus Christ. He is our ultimate hope and salvation from the consequences of sin in this world, among which is chronic illness. We can live well with chronic illness, even around it.  (That includes seizures by the way).

Nonetheless, the Quicksilver Mercury Detox Group and especially my Co-Admin, Marcia, and QS Practitioner Chris T who came alongside this effort early on, have meant so much to me. I can’t even number the times that I was very sick in bed with my head seizing to and fro, only to get the strength to check my phone for messages and find one from a member of the Q group. You needed hope and answers on a Tuesday, in the middle of the night. Sometimes you needed a nudge not to be a bully or a spammer; other times you were so anxious to find answers you nearly alienated yourself right out of the group! We tried to be patient and fair and understanding and helpful. In requiring a steady hand to reach out to others, your posts kept me alive at times. I hope I did o.k. Being an Admin of the Q Group gave me another purpose beyond my own survival. And I re-learned how to care for people again after losing my profession of 29 years. Surely my efforts weren’t perfect at times. Marcia and I had to play good cop/bad cop at times to calm the ruckus of some hurting members or compromise to come to an agreement between ourselves as Admins who met through this group. The membership grew just the same! People got well. We watched all of Dr. Shade’s webinars, built up our Files of resources, and tried to keep up on the latest QS products and protocols as they expanded from mercury detox to all aspects of recovery and wellness. It continues to be a tall order for sure.

An important point that I learned was that people from all walks of life worldwide have similar struggles. We all want to be well. We all have a tendency to shortcut the process because any amount of time in our lives spent feeling sick is too long. We ask “Dr. Google” for answers in addition to a number of Practitioners who we hope will help us and not harm us. We get angry or discouraged when either of them fail us or the process is either longer or more complicated or more expensive than we anticipated. But how could we have set expectations on a subject about which we knew little beforehand? Things are rarely what they seem, eh? Perhaps it is part of the human condition and especially the culture of modern societies to want it now! And what is “it?” It’s usually more than mercury detox as we want ALL of our problems to go away, especially this one.

I submit to you that the journey of recovery from serious illness is not only worth taking, it’s worth the struggle. For it’s in our struggle that we can learn who we really are, our strengths, the nature of the people around us, and what is really important in our lives. In this regard we can almost see our illness as a type of gift: one we would never ask for but one that will give us more than we could have ever imagined. Even our suffering, in the losses that inevitably come in the form of time, relationships, jobs, pain, status, finances, physical abilities, emotional trauma, and more can be worth the gains in our character, our resolve, our coming to understand that we can depend on Someone, Something greater than ourselves Who will never leave us or forsake us. We will not get through a serious illness successfully if we are alone or bitter or defeated. Getting to a place of internal victory as our world seems like it’s falling apart externally requires supernatural strength. That strength comes from the Giver of Life who loves you so and grieves your illness along with you (ref Romans 5:3-5). I have come to know His name as my Lord and Savior, Jesus Christ. You can learn more about Him by picking up a Bible and starting to read in the book of John. I hope that you do. Please contact me if you would like to chat more about what a personal relationship with Jesus Christ can bring.

Finding renewed focus and strength in my life as unto the Lord has opened up new opportunities for which I am exceedingly grateful. It’s not that my recovery from serious illness is over yet. It isn’t. Perhaps I have a better understanding of my limits and needing to re-focus what energies I do have in other areas of my life than on my role as the founding Admin of a large mercury detox Fan Club on Facebook. I’m letting go of some limited volunteer work at my community park as well. I do so humbly with massive gratitude for all that you who have chosen to follow the Q Group have given me just by being there. You trusted me and Marcia and Chris T and others to help you, to support you. I hope we did our jobs well as fellow sojourners and unpaid volunteers! Please forgive me if I fell short.  I will be contacting Marcia to problem-solve how to proceed before officially leaving the group then post an update to this blog post below.

You all and my Gentle Readers here at New Hope Beyond mean so much to me. Thank you for the opportunity to spend some time with you. To God be the glory for the good that has come from my time in the Q Group, my story, witness, failings, knowledge, experience, and now pointing each of you to the ultimate Admin: the Great Physician, the Lord Jesus Christ. He will see each of us through it all, of that we can be sure. JJ

UPDATE: On March 19, 2021, I announced my leave-taking from the Quicksilver Mercury Detox Group on Facebook. It’s been an honor to serve you. Godspeed one and all! JJ

So much to bear

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The weight of my world is heavy on my shoulders right now. To move forward (or to even make my way through the current burdens) seems too much to bear. I seek my Lord’s face, lie face down in front of His cross, and just hold on for dear life during the hellish parts. In fact, holding on, just trying to breathe was the most I could do yesterday afternoon.

The local oral surgery group that helped me in the past, finally decided to move up my appointment for a consultation. I need an infected tooth extracted ASAP. Once I found out that it could be contributing to the worst of my health issues, my focus sharpened on getting it outta there! But that is a tough goal to achieve when the world is shut down due to the coronavirus pandemic. Most dental and hospital services are shut down if deemed “non-essential.” The definition of “essential” seems to vary among various medical specialties, however. Three weeks went by after my need was identified; no one could help me anywhere in my state or the country unless I waited at least two months!

After an hour wait in the waiting room of the oral surgery practice, everyone equally spaced for social distancing and many persons donning some type of mask, I was led to a dark and cold dental suite. A metal tray table near me was covered with layers of sterile tools and surgical draping. The medical assistant had already screened me for COVID19 by taking my temperature, instructed me that a new panoramic xray would be needed because they couldn’t get my CD or thumb drive from my referring dentist to work right, uploaded the new pano, and begun to review the consent forms for a tooth extraction procedure. Say what? TODAY? This wasn’t just a consultation?

Five years ago another oral surgeon in this practice required that extraction of what would be discovered as 2 infected teeth, had to be done in a hospital setting. Dr. R didn’t want the liability and clinical risks of a seizure occurring in their outpatient office setting. We agreed and braced ourselves for a $10,000+ bill, out-of-pocket! Such is the nature of dental care when done in the outpatient department of a hospital these days. The procedure was successful and miraculously our medical insurance paid for everything! The drain on our household emergency fund was reimbursed. We were amazed! And many of my symptoms improved over the subsequent 6-8 months of healing. I also had fewer triggers of convulsive episodes as a result. That is, after one hell of an initial recovery process, with virtually NO PAIN MANAGEMENT due to medication side effects. That part was hell.

So flash forward to yesterday, when I knew that this new oral surgeon would probably need a reason to schedule the extraction sooner rather than later, if it couldn’t be done with a simple numbing procedure in their office. Some Nurse Practitioner thought it would be alright to do so even after reviewing my case on the phone a second time. Not! But I still knew that Dr. S would probably have to see a seizure to make this determination. I know. Every single type of healthcare provider that I have seen while battling serious illness over 8 years has not take me seriously until he or she sees a violent convulsive episode in-person. And even when the Practitioner does witness one, the clinical assessment of my condition varies widely. Would Dr. S believe me that jaw pain and an infection was in fact triggering seizures like they had in the past? I came into this appointment having had only 2 hours of sleep the night before, hampered by a 40+ minute episode in the middle of the night when unable to fall asleep. Just tap on my teeth buddy, I have a feeling that you will find what you are seeking.

Dr. S said that the new pano clearly showed evidence of infection. Then he examined and tapped on my teeth. The violent hell that ramped up thereafter prompted him to schedule an extraction in the hospital as soon as possible!

It all started with a little shaking then quickly ramped up into twisting/writhing movements of my torso, intermittent vocalization, head-banging, and desperate gasps for air. “Just breathe. Breathe in through your nose and out through your mouth,” was the broken record I heard from the voices around me like a thousand times before. I was able to blurt out not to touch me (for additional sensory stimuli makes the episodes worse) and that supplemental oxygen might help. They put an oxygen saturation monitor on one of my fingers and wrestled a larger cannula around my face. My eyes pulled shut and my photo-sensitivity kicked in from the uncovered window in front of the exam chair, burning through my eyelids. The Doc braced me from the right and had another staff person brace me from the left so that I wouldn’t fall off of the chair. My arms yanked inward to my chest in a flexion posture, typical of these episodes. My head rolled back then pulled forward again and again like dead weight on a pulley. Finally I was able to get enough respiration going to push out the words for someone to get my husband. “Have him bring the glutathione . . . . from a bag in our truck.”

Steve basically knows what to do to help me in these moments of crisis. But someone else putting a rescue remedy in my mouth for me usually won’t work well. If he misses and the liquid or pill or snack bar runs down my face then that light-touch sensation sends me into a more violent tailspin of seizing. I have to find a way to get my arms to work, to hold the medicine of sorts, and to get it into my mouth between waves of waking seizure attacks. It takes every bit of body scanning and mechanics, awareness of my surroundings despite the finding that my eyes won’t open, and numerous calculations to figure out how to get it done. It takes many failed attempts before success. Are my arms working again yet? Can I flex my trunk forward to put the TMJ dental appliance into my mouth since I can’t bring either hand to my face? We all gotta wait it out through my trial and error.

Initiation of movement worsens the episode at all points once it has started and even when finally nearing its resolution. If I employ whatever cognitive override I may have to grasp a bottle and squirt something in my mouth from my clenched fist slammed into my chest wall, there is often a price to pay even if I am successful. Initiation of active movement triggers another spike in the wretched involuntary posturing that follows. And it kills my neck! Then there’s the hemiparesis phenomenon: virtually always I either can’t move my arms, move my legs, or move some combination of either one. Trying to open my eyes too soon brings the sensation of glaring light that triggers a slam backwards again. The worst part is that I am awake the whole time this torture is occurring. Most people are unconscious during seizures. Not me. I am aware and feel and remember everything. And there is very little I can do to help myself. Guttural cries or grunts or fires of grief often explode from deep within me, sometimes yelling for the Lord’s mercy. There can be screams of terror. Tears drip from my eyes before most of these are over. The experience is a living hell. And they still happen virtually every day. For eight years!

The extra oxygen did nothing to help me. I wasn’t sure if it would help this time or not. There was a time in the early visits to the Emergency Room that pure oxygen calmed down the episode. Not today. The glutathione did reduce the velocity of the involuntary movements. The “waking seizure” transitioned to a pressured-type of shaking. Little breaks started where I could catch my breath and try to breathe in the O2 in from my nose as directed. But the episode wasn’t stopping yet. The area below my tooth was still stinging and I knew that the episode might not stop until the pain subsided. The tips of my toes and fingers burned. At home we had topical lidocaine, a numbing agent that my Craniomandibular Specialist in Florida had ordered in January. I asked for lidocaine and helped the nurse anesthetist figure out where tooth #19 was in my mouth. She didn’t know. The seizing slowed another notch. I struggled like an addict shooting up crack cocaine to switch out bite splints, hoping to take some pressure off of my jaw. Then suddenly, the hell was over. Eventually I was able to open my eyes. And all I could do was stare out there in front of me, or to nowhere, at nothing at all. Anyone think there is cranial nerve involvement in this serious illness? Mandibular branch of the trigeminal nerve? Yeah, me too.

The nurse needed consent forms signed for the tooth extraction to be scheduled in the hospital. Another 30 minutes later, I could move my arms and hands enough to manipulate a pen to sign my name. Over an over again, I worked hard to manipulate the pen. I had a little shaky spike. Eventually the papers got signed, I could sit at the edge of the chair, head to the bathroom for some supervised voiding, cautiously walk to the front desk, and leave the building as a beaten puppy. I was fried! And hungry!

I couldn’t wait to eat the food I had brought along with me while my hero, Steve, drove us to our next destination. I was faminshed. I had not had enough time to eat breakfast before the appointment at the oral surgeon’s office. Now there were more phone calls to make to set up my home healthcare that will begin this coming week. I needed to make arrangements for curbside pick-up with for essential and non-essential business we had to do before heading home. Life goes on and so do other aspects of my healthcare, my life. Steve had to get back home and back to work. Gratefully there were free plants in the mix as well. Maybe another time I can describe the score of free, cool-season flowers I acquired in exchange for a patch of yellow prickly pear cactus from our backyard . . .

No, it’s not all hell in my world. Yesterday there was much of it to bear though. Tomorrow will be better. The death of Jesus Christ on a Friday and His resurrection on a Sunday reminds me of this. One day, all suffering in this life will end including mine, including yours. Your sins can be forgiven, heart made whole, and hope restored Gentle Reader. Don’t bear suffering alone! I don’t. And I won’t no matter how much there is to bear. My Lord is the only reason I survive and in my spirit overcome the darkness of our fallen world to brain-dump here at 4:48 on a Saturday morning.

Again, Sunday is coming. Will you be there? :J

I’m not going to lie

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Just when you think you have figured something out, it’s really maddening to realize that there is more to know and you simply are clueless!

laxative, medical humor, gallows humor, Lyme disease, chronic lyme, catamenial seizures, non-epileptic seizures, coping with illness, chronic illness Hope Beyone

Hi, my name is Julie and I am the reluctant writer behind this blog after I got sick on October 11, 2011 and never recovered. I started my journey here online in August of 2012 after reading the blogs of 2 acquaintances. Journaling had been a life-long practice of mine, beginning with a diary that I wrote as a girl. The cover was shiny and flowery in white, pinks and reds. It had a little flap over the edge of the pages that I could lock with a tiny key. That still wasn’t enough to keep out my brother, Mike, to my horror! I don’t recall what I wrote but I do recall that he teased me mercilessly just the same. After that I got better at hiding my private things.

Flash forward many dozen years and the trend these days is to pour your heart out in a blog to the watchful eyes of the world. Just when you think that no one really cares about your stubbed toe or smashed fender, you realize that some stealth follower from another part of the world relates and responds to you in kind. I find it a kinda special occurrence and a reminder of our shared humanity. Still there are some topics better left untouched and facts left unsaid of course!

Be careful in sharing good news. If you are disabled, the government might use your day of reprieve as evidence against you that your life is restored when clearly it is not. That examiner probably won’t read the hundreds of other blog entries that describe some personal hell of one type or another. Like the convulsive episode I had this afternoon that yielded only after a prescription intervention, followed by a 5-hour nap. Or the second seizure attack a couple of hours later that yielded only after another type of remedy that actually worked this time. Thank the Lord that my beloved was home and willing to help me. I am grateful. And it all came just hours after helping our local Park while sitting here alone through the night to update their website: a good thingy!

If you happen to have dysfunctional family members or friends reading your blog then there might be entirely different consequences to complaining about blah, blah, blah over and over again. To this person I say well then don’t read my blog or (limited) Facebook posts honey! How about minding your own business a little more? Isn’t keeping a positive attitude, getting up in the morning, saving enough money in the bank for emergencies, and the like hard enough to manage these days than to meddle in someone else’s daily drama too? Do you really think I would fake this hell for self aggrandizement? I am not that kind of a sick puppy lady! You’ve got it all backwards. I’d rather remain anonymous or conversely, receive recognition for an admirable accomplishment. Like raising a rank as a Master Gardener largely from publishing our county’s newsletter in the middle of the night. Or volunteering in a public garden despite the heat exhaustion that came alongside many of the hours out there. And it all came on the hundreds of days each year when I did not have to crash back into bed, unable to function normally. Got it?

So where does a thyroid biopsy to rule out cancer fit into this muddied scenario? Will having major surgery thereafter legitimize my enduring serious illness and the varying opinions of persons on the sidelines cheering at times or throwing barbs at others? Nope. Others simply give witness to your life for the parts that he or she can see, to the extent that he or she can step outside of his or her own story. And none of us can do that fully. The peeps who truly love you will come closer to a sense of understanding. That is a gift for sure. However, it is only in a personal relationship with the Lord, Jesus Christ, in a life surrendered to Him that you will feel completely validated, loved, understood, accepted, and forgiven. He created you and ordains all that you are, what happens, when your life begins, and when your life will end. All for a purpose greater than anyone else will ever know. Lord willing, He will grant you insight into some of your life’s meaning along the journey and be merciful. He loves you so!

I’m not going to lie. Everything from what other people have thought and will think about me to questioning the Lord’s plan for my life is smeared across a messy collection of hundreds of blogs over these 8 years of chronic illness. Will it be cancer on top of everything else? Cancer: the one diagnosis that suddenly legitimizes one’s fears and suffering and need for compassion? So what. This stuff could really mess with my head. But what is really going on inside my mind? Not that much really. I feel like my Jesus is simply carrying me through it all. I feel numb inside and out. Often my thoughts are blank. When the tears come they are shallow, like a reservoir running dry after years of siphoning off for this trauma or that one. There’s not much left in my fuel tank. With no catharsis left for my angst, one might wonder who or what will nourish me now?

The answer would have to be the Lord Himself. Hold me please. I hereby place my journals, my blog, my illness, my life in your lap. Cover the Gentle Readers out there with your loving care too. Send forth your angels and Holy Spirit to care for, to guide us all. This is a tough world to live in these days. The suffering of your saints is great. We need you NOW!

Trusting Jesus

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The following is an excerpt from an article entitled, “The One Who Returned Home” by Naomi Zacharias on page 14 of the recent http://www.rzim.org quarterly newsletter (Spring 2017, I believe).  She quotes a letter that recounts a story from Donald Miller’s book Blue Like Jazz, about a friend who was a Navy SEAL.  The closing remarks are from Naomi.  I hope you enjoy this piece as much as I did!  JJ

(The Navy SEAL) was performing a covert operation, freeing hostages from a dark part of the world.  When they entered the room, it was filthy and dark.  The hostages were curled up in a corner, terrified.  The SEALs initially stood at the door and called to the prisoners.  They identified themselves and asked the hostages to follow them, but the hostages wouldn’t move.  Alienated and frightened, they instead hid their eyes in fear.

This particular SEAL put down his weapon, took off his helmet, and curled up tightly next to the other hostages.  He was trying to show them he was one of them.  After meeting their eyes, the Navy SEAL whispered that they were Americans and were there to rescue them.  “Will you follow us?” he said.  The man stood to his feet.  First one prisoner did the same, then another, until all of them were willing to go.

(The person sharing this story) reminded me that Miller concluded this:  “I never liked it when the preacher said we had to follow Jesus.  Sometimes they would make him sound angry.  But I liked (this story instead).  I liked the idea of Jesus becoming man, so that we would be able to trust him, and I liked that he healed people and loved them and cared deeply about how people were feeling.”

(The storyteller) shared that it reminded her of what Jesus has been for her.  But it struck me how she has embodied this message in her ministry.  (The storyteller’s name is Analise.)

When Analise hit rock bottom, the reason she found safety in (a program called) the Word Made Flesh is because they were willing to sit in that place with her; they remember their own lostness and the mutual need for a Savior who rescues us.  He did not choose to do this in grandiose fashion.  No, he chose the utter loneliness and pain of the cross.  And so it is he who beckons us by sitting down beside us, showing us he became one of us.  He tells us he is our Savior, and he leads us home — so that we may all be the one who returned home.

Blueberries take a stroll . . .

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blueberry, buckle, compote, crumble, bake, Valentines Day, special occasion, humor, funny, baking, loveI wasn’t exactly thinking of baking a blueberry dessert when the little rascals from my Big Box Store shopping extravaganza were scrambling all over our driveway the other day!  Oh dear.  My beloved will probably be reading this.  I washed them off Steve, truly I did!

Such is the caper of the rogue blueberries:  I opened the passenger side door of my truck to a splash of little purple berries spilling out onto the concrete beneath my feet.  I ended up stepping on one or two as I stepped back to figure out what had happened.  Squish!  They had rolled underneath the truck, in front of the door, all around my feet, down the driveway, and even past the sidewalk 20 feet away.  Geez oh man!  Good thing for cracks in the sidewalk or the courtyard would be a “hazy shade of Winter” too!  Maybe they wanted the freedom from their cramped clam shell cave into the cloud-covered, 30+ degree air?  I dunno.  I was getting cold so I set myself to rescue all that I could quickly without crushing them . . . two by three.  Blueberries on the loose are not easy catch you know!

Two days later I had figured out that the day AFTER Valentines Day would be a perfect occasion for putting my little treasures to good use.  I didn’t even use a recipe and yet I was able to concoct a gluten-free wonder made with a stick of butter, chopped pecans, and slightly sweetened coconut cream topping that would seem to get along well together.  Yes!  It was yummy!

So let this be a lesson for bakers everywhere.  If you want a great homemade treat for a special holiday and exceedingly wonderful someone, rough up the ingredients on the pavement first.  The beating will soften them and you just enough to get your creative juices flowing.  The delectable dessert prize surely will soothe your taste buds long enough to make you forget about your sore knees and the blue stains under your fingernails!

Your sweetie will like it too.  ;JJ