Gathering medical records and other documents, making travel arrangements that accommodate my sensitivities, and putting together a timeline of the serious illness I have been battling for 8 1/2 years has been an emotional process for me. Just surviving to this day has been a traumatic experience. The blessings are there too yet not as clear right now with the hundreds of sheets of medical records behind me as I type this post.
I have endured so many dead ends and dashed dreams for recovery, physical damage from thousands of convulsive episodes, tens and tens of thousands of out-of-pocket expenses, and so many losses on every front of our lives. One truth is clear that I would not have survived this far without my faith in our Lord, Jesus Christ. He was my Rock when my breathing would not start in the darkness of night or my legs would not move to get me to the bathroom. Both my beloved Steve and my Lord carried me through it all to this moment in time.
Regardless of what has gone before us, Steve and I are pressing forward, hopeful for a good result at an upcoming consultation at the Mayo Clinic. For the first time since the onset of this serious illness, I get to see one of the top Doctors in neuroimmunology at THE top medical facility in the country. That is humbling. I am grateful.
Now is the time to pray for a cure to the daily convulsive episodes. Lord willing, I will be well! Thank you for your love and support, Gentle Reader. Love to you, JJ
Seven years ago this night, I contracted viral hepatitis kayaking in a local reservoir, beginning what has become 7 years of serious illness. Yet today passed with more of a sense of gratitude than mourning the lost years. May I share the good things that came from this journey?
Learning to blog, beginning in the summer of 2012 and continuing to this day.
Meeting some dear friends in the chronic illness community in relationships that 1) began locally and have continued to this day or 2) transformed from online to face-to-face either electronically or in-person. Love you ladies!
Learned how to develop simple websites for e-commerce, blogging, and marketing for myself and others.
Supported my husband as best as I could in his distributorship of performance kayaks and gear: River Bear Racing.
Became a Master Gardener and advanced within the ranks with as many in-home projects as those in the community.
Became an Assistant Editor of the United States Canoe Association publication called Canoe News under the tutelage of the handsome Editor and husband named Steve!
Recently became Editor of Across the Fence for the Purdue Extension Master Gardener program. This required a crash course in another online program: Microsoft Sway.
Became a better cook and homemaker/helpmate to my beloved Steve as I have been increasingly able to do so as the years have progressed.
Became my own patient advocate, occupational therapist, care coordinator, medical billing and records specialist, and health coach. Sure, I hired a Naturopath for epigenetic counseling that was beyond my brain fog to understand yet kept in-step with as much of my care as humanly possible: seeking answers and finding some too.
Learned to camp via travel trailer aka our mobile clean room! We are grateful for the Lord’s provision on this one.
Taught myself via online videos to sew upholstery for our patio and the travel trailer.
Learned to grow vegetables and native plants; working on a community rain garden project for the near future.
Experimented with a some volunteer work for our community park this Fall that really stretched my abilities and tolerances.
Kept my occupational therapy license current with online continuing education, review of pertinent literature, and following the latest issues-and-trends in my profession.
Trialed being a caregiver to an elderly family member. Didn’t succeed yet worked very hard in this role for six months earlier this year.
Became a writer!
Fell more deeply in love with my intended beloved, Stevers aka River Bear.
And most importantly, grew into a vital relationship with my heavenly Father, heavenly Husband, and Savior Jesus Christ. He is my rock now and forevermore!
How did all of this happen when experiencing daily convulsive episodes and its consequences virtually every day for 6 1/2 of these past 7 years? Well that’s just how good our God is, Gentle Reader. Little was done in my own strength in the most wretched of months. The episodes in general aren’t as bad these days as long as I stay away from the worst noxious stimuli to which I am sensitive and plan rest days accordingly. They aren’t gone yet. I’ll write more about a recent setback soon. Gratefully, the reactivity has come down quite a bit; I can see marvelous progress. Yeah God and praise the Lord for His mercy and grace!
A long time ago I made a decision to use the word “love” a little more freely. That decision came with another which was to not let concerns of what others would think of that get in the way of expressing that love. For example, if it was a female friend then she would get that the “love” was within the context of loving a fellow believer in Jesus Christ, love like a sister that I never had, and possibly a bond that simply comes with walking through many years of life’s ups and downs together. The transition would be instant, from “Take Care” at the end of an email to “Love, Julie” if we had just endured a crisis together. When one heart is hurting, there is no other word that will suffice. Love covers things well.
Born again believers know the author of love as God himself. The scriptures instruct us that:
19 We love because he first loved us.20 Whoever claims to love God yet hates a brother or sister is a liar. For whoever does not love their brother and sister, whom they have seen, cannot love God, whom they have not seen.21 And he has given us this command: Anyone who loves God must also love their brother and sister. 1 John 4
The Lord is the perfect reflection and expression of what love looks like. I do believe that those who are not in Christ have a sense of what love is like too. That is why I feel comfortable including a video in which 1) two women are kissing and 2) there is a man dressed as a woman embracing another man. If the relationships were real, they must have a sense of connectedness to express their love outwardly. I am not condoning homosexuality. I just might understand it a little more since my late Uncle Fred lived and died within the context of “the gay lifestyle.” I still loved him despite this decision. Oh how I wish he and others knew the deeper spiritual connectedness that comes in a God-fearing and God-honoring relationship! The Lord blesses those Who love him first! (Hebrews 11:5-7) But that is not my focus here today.
My focus is the importance of expressing love everyday to those you care about. It’s not weird! I am reminded of this today in the middle of 8 days in which my husband and I will attend two funerals. I had only met his Uncle Don one time and was more “acquainted” with Dave than knowing he and his wife Jane more “personally.” It didn’t and does not matter. As fellow believers in Christ, their character and lives had impacted my life with that level of connection. Uncle Don warmly accepted my marriage to Steve that had come at a time when most of Steve’s children still could not. Since I knew without a doubt that the Lord was blessing our marriage, it was refreshing to feel loved by his family. I thank the Lord for this.
Also when Steve and I married and started to attend his church home, he pointed out couples with strong marriages that he wanted to model our relationship after. Dave and Jane was one of them. They had been married for decades by then yet still had a sense of fun, a spark, and a deep love for one another that was palpable. They worked separate jobs outside of their home yet were usually together at church and other important events. Dave served the body of believers, his community, his employer, and his family with equal enthusiasm. Thank you for pointing out this great example of a Godly man, Steve. And yes, you are much like him for sure!
Today I am unable to attend Dave’s funeral service due to complications of a serious, ongoing illness. Last night was particularly wretched. I had a sense that it would be risky to go to the funeral home and be around so many people and potential exposures that trigger convulsive episodes. I went anyways. I am also in the middle of re-shuffling my treatment plan and have no idea what made things so much worse. The only good part about that hellish 2 hours was the toning of my abdominal muscles from flexion posturing, writhing, seizing, moaning, and more. Oy vey. In the middle of it I asked for the Lord to remove this hell. I begged for His mercy. It must have come since at some point I passed out and woke up about 7 hours later . . .
Today I am beat up from all that has transpired in the past day. Somehow I am still alive! Though my heart is heavy with grief on many fronts, I do not regret pouring out the strength that I had to be with friends in their time of need. I got to be out with my beloved husband and do one of the important things of this life. Going to the wake reminded me of the truth told a gazillion times before: there is no day like today. There is nothing like love between two people, magnified and blessed when they are one in Christ. And lest it be forgotten or unknown, it is important to express that love out loud and often. For me this includes the love of my Lord and Savior, Jesus Christ. For just as it says in the song,
I die without You!
Talk about perfect love! Oh Gentle Reader, won’t you join me in sharing a little love today?
Since I’ve been affected by the neurotoxin called “mercury” and have invested considerable time and resources into this topic, it seems appropriate for me to provide some resources here. I have blogged about my own health issues related to mercury poisoning. My beloved husband saw my telling test results, witnessed the process of detoxification, and has championed the benefits in improved health that have followed. Then I realized that there is some background information that I may not have shared with him or in Hope Beyond. Steve still has questions. Maybe you do too, Gentle Reader?
Let’s start with a basic video from a scientific perspective of a lab. Looks like mercury is indeed toxic and gives off dangerous vapors:
Now apply the information to a tooth in a human body and the typical scenarios people experience when it is in their mouth. Note that other studies show body burden increasing within hours not just 30 days:
Here’s more detail about dental amalgams, its effects, and how the rest of the world has addressed mercury toxicity; this one is older and a little quirky. They call for more research (and that research is now available):
But how can mercury affect the body? Here’s another genteel overview from a dentist with some studies cited and an explanation of the general mechanisms of action. She is one of many, many who have published videos on this subject. Note the opening remarks about the lungs (which is where most mercury enters the body via vapors):
The dentist noted above also has a video series that is well thought out, easy to understand, and contains nice graphics with no hype graphics.
What has been discussed in the videos above is inorganic mercury. To round out this introduction I must add another form which is “organic” or methylmercury from fish. Check out this case study from a city devastated in Japan by mercury from industrial waste. If you watch my videos on YouTube you will see how I can relate to the wretched convulsions of Minamata Disese. Skip to other videos in the series on Minamata Disease for additional history too:
In the future I will chronicle my own discovery of mercury poisoning, the best treatment for me, and how reducing toxicity affected my health. Just recently I have found that detoxing from mercury is the largest part of my restoration to health. For the treatment approach that I would recommend as a fellow sojourner (not as medical advice!), please see the Mercury Toxicity Overview page of this website.
And please be encouraged, Gentle Reader. We are going to get well! JJ
One of the movies that has really resonated deeply with me is, The Breakfast Club. Please see my previous post for the catchy theme song that underscored the film and one of the most poignant scenes that is also pertinent to Part 2 of this 3-part blog.
In Part 1, I described the isolation that I have felt when enduring a serious illness and how the Lord still gets me through the toughest of days. His Word is my greatest comfort; the leading of the Holy Spirit and His presence are my greatest companions. I ended with a question,
But how well does he really know me?
Sure, my Lord crafted me before I was born and set forth all that I would be, all that I would endure and accomplish. His Words in Psalm 139 declare that He knows my “innermost being.” Does this include the longing of my heart as well? If it does, why has He allowed me to become so dreadfully isolated?
Maybe someday I will get to see why so many family and friends have chosen to “walk on by” me as it says in the theme song of The Breakfast Club. Have I not been a good friend? Maybe I was not. I remember about two years into this ordeal someone contacted me and asked me about getting together for coffee. I replied “yes” and then I never heard from her again. My spirits had soared then crashed and burned. For believers in Jesus Christ, the answer to the “why” question is usually left for eternity. We simply may never know “why” this side of heaven.
Those of you not living in isolation may not have any idea how much Satan uses this experience to tear a person down. He can prey upon all of our negative emotions and be allowed to create havoc in our lives. (Yes, ultimately God is still in charge!) Yet I know that it’s really not about resisting Satan or about losing the people in my life. I resist the devil and his demons with the sword of the spirit: the Word of God as described in Ephesians 6:10-17. People come and go in our lives and that is the normal ebb and flow of life. It really is about my response to the taunting, the loss of these relationships.
My challenge has been particularly great due to the effect that this chronic illness has had on my brain. Responding to Satan’s lies and the loss of relationships has been affected by the change in brain chemistry that came with chronic illness. My ability claim victory in the name of Jesus Christ and fully embody the companionship of my Lord have been affected. Satan’s lies have been magnified. My social skills have eroded. My ability to think clearly has been altered. And I struggled to override these skill deficits but could not, even if I tried. Allow me to explain.
Only recently did we discover that excessive neurotransmitters called catecholamines (epinephrine, norephinephrine, and dopamine) are likely contributing to my mood changes, thinking and communication skills in addition to possibly causing the convulsive episodes. This is happening due to the expression or “turning on” of polymorphisms (SNPs) or breaks in several enzymes that help form my DNA code. The DNA code is the instruction manual or blueprint from which the body functions. Everyone has a unique combination of broken SNPs that get turned on by illness or significant stressors in the environment (such as exposure to mold). For me the factors included everything that I have written about in this blog: biotoxin illness/hepatitis, latent Lyme disease, Candida toxicity, mold illness, infected root-canaled teeth, and mercury toxicity. That’s a lot of stressors! These illness and environmental challenges became a trigger for disaster. I even have the data to prove it, all of it!
For some people this process manifests as a Mitochondrial Disease or a disruption in the methylation cycle inside the nucleus of the cells of our bodies. My thought life was affected. My mood was affected too. I had waking and nightly nightmares not based in any reality past or present. Those were internal things that my beloved husband, Steve, and the healthcare community could not see very often. Several healthcare practitioners labeled me as having a mental illness of sorts, often without even completing a mental status exam or workup! Gratefully, Steve believed me. They all saw the wretched convulsive episodes that have plagued me for hours every day for 3 1/2 years. And Satan was allowed to enter into the whole dynamic with lies and attacks that I will definitely write about at another time. Absolute mental and physical wretchedness.
But now the gig is up! Two days ago I woke up from a lovely nap after starting to treat this condition. I had my first 16 hours seizure-free! It’s as if someone turned on the lights in my brain! Not only do I have a formula for correcting the brain-part of the process but the prayers of deliverance against the spiritual warfare are taking hold. The cascade of negative mental, physical, social, emotional, and spiritual suffering is beginning to turn around. Lord willing, I am going to get well!
My Jesus knows all about every aspect of what I have described here. He also knows the desires of my heart. How do I know this? My prayers long before this illness began was to become whole. I had been broken by the consequences of a hard life: events out of my control. Many times during trauma the Holy Spirit would bring encouraging scripture to me that kept me moving forward. Yeah, finding hope and finding myself has come through horrible, ongoing isolation and trauma. I have worked hard to recover from so much suffering in my heart, my mind, my body. Each step of the way has been both painful and meaningful. Yet I tell you, Gentle Reader that nothing has been wasted! I have learned to trust the process in EVERY CIRCUMSTANCE under the protection of my Lord and Savior, Jesus Christ. And now the desires of my heart are being realized. Cool beans.
So how does one rebirth the desires of one’s heart?