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
I’m kind of freaking out over here. No really. You would think I was preparing to go for the biggest medical evaluation of these 8 1/2 years battling a serious illness, or something. Well maybe I am!
Some of my medical conditions have flared a bit lately, requiring medication and distracting me from my primary goal at the moment: preparing for a consultation at the famous Mayo Clinic. I have SIX medical appointments this week alone, FOUR next week! Gratefully, the locations of these appointments have put me in the proximity of places from which I need to gather medical records; one of them proved to be timely in addressing the flare-up of an acute, stress-related condition: shingles! Thank the Lord I caught that one early! Ugh. And just about everything related to my care will have been updated by the time we leave for Rochester, Minnesota: the biggest snow belt of the United States of America! Not that I am stressing over that one as well? Maybe so.
My beloved is both helping and complicating the process with his energetic ideas, last-minute plans, and on again/off again pursuit of a better, new-used truck. Turns out we are letting the last one go for now. Yay! There are always extra expenses and things to do when you make a major purchase. Now is not the best time for us to buy a truck! We really need to think through this purchase a little more, focus on our trip to the “Mayos,” and get some other proverbial ducks in a row. Steve will still be off working hard and doing his various activities in the meantime before we leave . . . seeya for dinner or at bedtime when you return home my love. (Yes, we still have a very late household.)
What’s left to do:
Receive the medical records from the Doctor and 2 hospitals I have visited the most.
Organize and condense hundreds of pages of test results into about 50 pages, labeled in some meaningful way.
Confirm arrangements with the hotel who promises NOT to use fragranced products in our room prior to our arrival. So bummed that an Airnb didn’t work out nor the Serenity House Network.
Pack WARM clothing, dog food, new dog medications, numerous supplements and medications for me, and enough food to get us through the first few days in the northern tundra. Gratefully our hotel room will have a kitchenette; it’s too frigid for our usual mode of camping via our “mobile clean room.” Most important on the packing list of my beloved: cross-country skis! I may take my snowshoes as well.
All the other stuff you do when away from home like laundry, placing he mail on hold, watching the weather here to have the snow shoveled when we are away, watching the weather there to confirm suitable road conditions, and the like. Should be less work than camping for sure!
While this process is exceedingly stressful when still battling a serious illness with bad convulsive episodes virtually every day, I am exceedingly grateful for the opportunity to got to the Mayo Clinic. Thank you Lord! It’s rated the best hospital in America! The top Doctors in the area of autoimmunity and neuroimmunology conduct research and see patients at the Mayo Clinic in Rochester. I have heard first-hand from some of my new Doctor’s patients and they state that he provides excellent care. Yay!
I am also glad that I did not go the Mayos 3 years ago when I was looking for new answers to troubling medical questions. Since then, we have further tested and treated for Chronic Lyme disease, lowered my burden of heavy metals, healed from various dental procedures and treatments, investigated numerous other potential infections, addressed/ongoing orthopedic issues, completed a comprehensive cardiac work-up, and even received genetic testing and coaching. It’s been a busy 3 years! All of these conditions could have explained this horrible illness but they did not. Good news: I can now tolerate more of the supplements and medications that are needed to re-build my health (which was impossible to do without triggering convulsive episodes in the past).
My prayer has always been that something of value would come from over 8 years of daily struggle. The Lord has been faithful to see us through even the darkest hours where demonic influences were palpable, suffering greater than I can even describe. Both Steve and I have been tested beyond what we thought we could ever bear yet the Lord has met us, sustained us, even carried us. There were sweet moments along the way that served to encourage us. We understand that others have been encouraged by our testimony as well. Yay God! Overall, these past 3 years preparing to go to the Mayo Clinic certainly were not wasted, that is for sure. It’s time to rally for a cure.
Let’s hope so, eh Gentle Reader? We are hopeful again! JJ
As you may have read in the About Julie page of this blogsite, I treated for Chronic Lyme Disease early in the four years that I have been battling serious illness. I had not recovered my health four months after a bout with viral hepatitis and our Family Practice Physician convinced me and Steve that latent Lyme disease was keeping me sick. Then the story changed a few times . . .
Treatment for Lyme disease, Candida, mold exposure, mercury toxicity, gut parasites, and infected root-canaled teeth has still left me with the following symptoms four years later:
Hours of daily convulsive episodes, every single day
Painful shoulders, forearms, hips, neck, jaw, and more
Ringing in my ears
Multiple severe chemical, mold, and sound/light sensitivities
Significant nutritional and hormonal deficiencies
Episodic cognitive and emotional setbacks
Periodic night terrors, nightmares, waking terrors
Weakness and deconditioning
Air hunger and chest compression symptoms
Severely disrupted sleep/wake cycle
Food sensitivities despite a restricted diet
Inability to consistently perform activities of daily living or work
Intolerance to treatment
So in other words, my life is kinda hellish a lot of the time! Today was no exception. Then right in the middle of the trauma there were tender encounters with the sweetest man on the face of the earth: my Stevers. We talked in between seizure attack episodes, he provided care when I could not move, and we made the most of a low-key day. It was the “same story, different day” around here. And something else happened too: I may have discovered another piece of this wretched illness mystery: Latent Lyme Disease can affect the gut which in turn can contribute to neurological complications much like the ones that have eluded all of our attempts at recovery.
No, it’s not systemic Candida as I suspected when I wrote my last Treatment Update. It’s called “Bell’s Palsy of the Gut,” a term coined by Lyme Literate Medical Doctor (LLMD) Virginia T. Sherr. “Gastrointestinal Lyme disease may cause gut paralysis and a wide range of diverse GI symptoms with the underlying etiology likewise missed by physicians,” states Dr. Sherr in the April 2006 issue of Practical Gastroenterology (p. 74). There are tests that can be performed to determine the presence of Borrelia burgdorferi along with other microbial pathogens transferred in tick saliva after a bite. In two weeks I will have a diagnostic procedure in which these tests could also be performed. Whoa Lord. Is that why I felt led to add an anti-microbial to my anemic treatment plan?
God is good. All the time. God is good. Today I felt led to add back a probiotic that I actually was able to tolerate this time. The new information about Lyme disease may explain the increasing gut inflammation this past year and my supremely negative response to a trial of a far-infrared light treatment to my abdomen. Or to any abdominal exam. Or to physical therapy to the hip flexors in the lower part of the abdominal wall. Or to certain foods. At any rate, a new door has opened and there are new possibilities for getting well. Perhaps it is time to re-visit the diagnosis of Lyme disease.
Stay tuned. This exquisitely wild roller coaster ride of recovery from serious illness is about to reach a new station. In the meantime, please pass a spoon and 1/2 of a carton of Siggis plain, grass-fed, organic and Icelandic yogurt. We’re going to get this thing right or keep screaming all the way to the bottom of the next hill until we do! (I told you that I worked in an amusement park one summer didn’t I? Yeah, Cedar Point is really cool!)
Obedience is one of those words like “discipline.” Not popular either one of them, yet both separate the whining cry babies from the mature adults amongst us. For believers in Jesus Christ, obedience matures our faith and transforms us into the image of Christ (a work never completed during our lifetimes). In our humanity our flesh tugs at us to rebel or be tempted in directions other than the leading of the Holy Spirit. But by focusing on His incredible gift of grace, studying His holy Word, and submitting to the leading of the Holy Spirit we will end in a better place for sure. I have seen it in my own life and in the lives of others. His will is best. His timing is best. Why? Because He loves us and because He is God!
These thoughts came to me after reading an interview of Ravi Zacharias in the RZIM Summer 2015 newsletter and listening to a message by Pastor Paul Mowery of Harvest Fellowship in Leo, Indiana. At the close of his message on Romans 11, Pastor Paul encourages us to “be about worship,” praising His great name for having mercy on us as recipients of the Lord’s grace. We are not to dwell on what each of us may have done that draws attention to ourselves. We are to be about Him: worshipping our Father God.
Lately I am struggling with these themes. Many of my posts here have tried to pull something meaningful out of the challenges of a wretched illness. As the days wear on with the setbacks of late, I have found myself literally screaming out my anger at God with the wails that accompany the convulsive seizures. “Why do you hate me?” Oh yeah, it’s bad. Even my beloved Steve who has been at my side during a fair amount of this hell admits his anger at God. And we are convinced that this is an o.k. thing to do. It is not an o.k. place to stay, however. And it is certainly not an acceptable attitude to act upon.
You simply cannot be angry at someone whom you do not love dearly. Such is our dilemma. We both love the Lord, Jesus Christ, and are humbled, grateful for His mercies in each of our lives. We have so much goodness between us! We are grateful for so much! And in our humanity we are broken and don’t like the brokenness. Way down deep we are hurting and it is this hurt that fuels the anger. Admitting this will be the way out, the way back to fellowship, the discipline that will bring obedience, the song of worship yet to come . . .
7 So, as the Holy Spirit says:
“Today, if you hear his voice, 8 do not harden your hearts as you did in the rebellion, during the time of testing in the wilderness, (Hebrews 3)
Therefore, holy brothers and sisters, who share in the heavenly calling, fix your thoughts on Jesus, whom we acknowledge as our apostle and high priest. 2 He was faithful to the one who appointed him, just as Moses was faithful in all God’s house.3 Jesus has been found worthy of greater honor than Moses, just as the builder of a house has greater honor than the house itself.4 For every house is built by someone, but God is the builder of everything. (Hebrews 3)
6 being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus. (Philippians 1)
Today with the faith of a mustard seed (that I understand is rich in nutrients of which I am needing anyways!) I will choose to honor and worship the Lord, my King. He has built this frame in which I dwell and within it dwells the Holy Spirit. Broken or not, it is the vessel from which I will praise His name all of my days. I lay my angst on His mighty throne of grace, with great expectation of His promise to redeem it for His glory.
May He be glorified in all. My Jesus. My all in all. Worthy of our praise. Worthy is this Lamb of God! JJ
Cast your burden on the Lord, and He shall sustain you; He shall never permit the righteous to be moved. Psalm 55:22
But I want you to know, brethren, that the things which happened to me have actually turned out for the furtherance of the gospel. Philippians 1:12
I am 2 days post surgical removal of 2 root-canaled teeth and THE CONVULSIONS ARE GONE!!! Yipppeeee and praise the Lord! This 3 years of daily hell for me and my beloved husband, Steve, is finally over!
While there is still much work to do to detox mercury toxicity and re-evaluate chronic Lyme and mold illnesses, I feel more optimistic that I will be able to tolerate those treatments someday. Until this week, I was failing. I was bedridden most every day with convulsive episodes. The grief and impact was huge on everything from our finances to my aching neck. My husband no longer got a full night of sleep and this illness had changed virtually every activity inside/outside of our home. How would Steve find me when he came home from work? Would he have to make me my pureed dinner and feed me again before bed tonight? Carry me to the toilet? Our hearts were weary after 3 years of this living hell.
Nine months ago I began investigating how two sore molars in the upper left section of my jaw might be impacting my health. Four dentists and three oral surgeons, a cone beam CT, MRI, and pano plus regular x-rays later (including a consultation out of State) we had no objective data to guide us. Everything looked “fine.” The teeth had bothered me for over 13 years! Fifteen years ago I had all my amalgam fillings removed but was never guided to chelate for mercury. Were there silver filings containing mercury remaining underneath the crowns over these two teeth? We will never know the answer to that question. My saliva had started tasting metallic. Eating started triggering the convulsive episodes. With Steve’s support, we took an expensive leap of faith and pursued a dental solution.
Additionally, seven weeks before what would become the big day, I started eating only on the right side of my mouth. Two and one-half weeks later I started a pureed diet to eliminate the chewing action that seemed to make things worse; all this was quite a feat since my struggle to get well led me to eat low oxalate, virtually dairy-free, and completely sugar/sweetener-free, gluten-free, and mold -free foods too! Another two weeks later and 1 week before the surgery I noticed that using plastic utensils delayed the onset of convulsions after eating. Even drinking my foods through a straw helped initially then ultimately triggered episodes. I feared eating anything at all! The only problem with that was hunger and thirst could also trigger convulsions or make them worse. I felt trapped!
Three and one-half days before the dental surgery my doctor recommended trying an EMF deflecting device. “It might help” he said, like so many other recommendations I had received all over the spectrum of traditional and alternative medical care. After one such technology (a Rife machine called a Beam Ray) I tried 3 years ago to treat “Chronic Lyme,” the daily tic attacks started. Within a year these episodes would escalate to waking seizure attacks then convulsive episodes lasting 2 to 5 hours per day. We had tried to shield me from wireless technology in our home in the past yet the results were initially helpful then inconsistent. This time the GEOMACK from Spain reduced the intensity of the convulsions 50%. That reduction gave me a tiny boost of strength that I needed to physically and mentally prepare for surgery. My husband got some much needed sleep as well! Could their be an electrical cause after all? (See this blog for more anatomy and discussion.)
The morning of the surgery went as usual. Convulsive episodes began shortly after opening my eyes and periodically as we prepared to leave the house. Seizure zips ripped through my hungry and thirsty frame as my beloved drove us to the hospital. We were still reeling from the large check we had to carry with us since the oral surgeon insisted on performing the extractions near a crash cart, I guess. And after some prayers, many silly jokes and one last shake/rattle/and roll with placement of the IV in my arm, the time had come to let go and not look back. We reviewed my situation with the anesthesiologist and oral surgeon, surgical tech, and several nurses. They were not to abort the mission if I seized under anesthesia! Just wait a moment and get the job done.
I’d like to say that I woke up in a calm, blissful state but that simply was not the case. I became nauseous and pain management was a problem over the next day and one-half. Oh well. One thing was certain: THERE WERE NO SEIZURES OR CONVULSIONS! The “battery effect” of dissimilar metals in 2 adjacent crowns over root-canaled teeth WERE FRICKIN’ GONE! No more tazoring of my brain would continue. And hey, if there was hidden infection in the root-canaled teeth then the problems caused therein are now also “history.” The hell is over.
My job now includes retraining my brain to relax when falling asleep instead of bracing for impact. My job now includes remembering all of the relaxation techniques I used to train my patients in psychiatric hospitals to deal with anxiety. I need to rework those memory pathways and feelings of impending doom that followed me, waited for me every night, every morning, every time when I was exposed to noxious stimuli, or even on the clothing or breath of my beloved anytime, anywhere. Hey, no problemmo. I am ready to live and the extended forecast is good!
Thank you and big hugs to those of you who have followed my story for any length of time, You have been an important part of my lifeblood to go on when I could not. Sometimes my husband could not be home with me and I was alone, feeling terrified mostly of even greater suffering and it came. The worst episodes were never captured on YouTube videos because my warrior husband was needed to hold me tightly to keep me from greater harm instead of holding onto a camera. Sometimes the Lord was silent even when I cried out to Him when breathless, facing death again and again when my breathing stopped. When He did speak I gained the courage I needed to face the next trial. In the end, death was not my greatest fear. Dying without my Heavenly Husband was.
But you know what? I made it through. Steve made it through. A new chapter in our lives is about to begin. I’m going to take some time now and regroup. I am very weak. An infusion of my Jesus is needed. The warmest embrace with my beloved must follow. And really good food cannot be far behind. After tomorrow the putty d’ jour will be history! Yeah God!
With love, JJ
But the Lord was my support. He also brought me out into a broad place; He delivered me because He delighted in me. Psalm 18:18b-19
Cast your burden on the Lord and He shall sustain you; He shall never permit the righteous to be moved. Psalm 55:22
UPDATE: The holiday from convulsive episodes did not last, unfortunately. There were many benefits from having these two infected teeth removed: significantly less mouth pain, less congestion in the upper shoulder and neck, decreased TMJ symptoms, decreased auditory anomalies, reduced ringing in my ears, and more. Then there was a miracle: our insurance company covered most of the $10,000 bill. Amazing! :J