Bed bound, all of this beautiful day today. Food is often triggering convulsive episodes so we are examining blood sugar issues with diet refinements and testing. Had to take a steroid today to stop episodes; bad for me due to osteoporosis. Having MRI workup in 6 days of a pancreatic cyst. It was identified 9 MONTHS AGO AND LOST IN THE FOLLOW-UP when diagnosed with hiatal hernia at that time. I found it when filing some of my medical records. Nausea is lower after stopping a supplement that was reducing the episodes. Hard to choose between blood sugar stabilization with an unexpected side benefit of reducing episodes (with Biocidin) and the nausea it magnified. I went for less nausea hoping to figure out interim strategies to address blood sugar. Waiting to be scheduled with an interventional gastroenterology specialist who happens to be the director of a large hospital cancer center here. One of the best in the Midwest. Probably looking at an endoscopy ultrasound procedure thereafter; lab workup has started. Hungry again . . . Afraid to eat. Have volunteer responsibilities now and concerned about meeting them.
Please pray. This could be a new course of care that leads to a cure for my worst symptom. Or cancer. Holy cow! Having severe spiritual attacks.
Leaning on the Lord . . . Pic is from a better day 2 weeks ago. Our God reigns! And Yay God for that sweet evening with my hero, Steve!
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
Soon I will come up on the seven year anniversary of when serious illness entered my life. No, I won’t be kayaking in the Cedarville Reservoir to commemorate October 11, 2011! That’s the day I contracted viral hepatitis and never really recovered. It’s been a complicated journey since then, trying to get well.
Soon I will meet with my Doctor and see what he thinks about a new treatment with which I have been experimenting. Recently I wrote about how devastated I was when some vascular studies revealed no new information about why the convulsive episodes continue. Over the next week I dwelt at the foot of the Cross of my Savior and He showed me some things I had not considered before: many of the triggers of episodes have had something to do with my neck. The CT Angiogram helped me examine this issue more closely and led me back to a comment by an ENT specialist back in January. He said I should look into vagal nerve seizures and so I did. That process led me to pursue specialized dental appliances that helped take pressure off of most of the cranial nerves involved in episodes and they started coming down within a day or two. Adjustments in the appliances helped further then the improvements waxed and waned as time went on. It is now 7 months later. They are a pain to wear and look weird. What else could be going on?
Soon I may have more of an answer to that question as I experiment with specific stimulation of one of the 12 cranial nerves: the vagus nerve as it travels through my neck area. A person has to be careful with this as it lies in close proximity, distal to the carotid arteries, thyroid, and parathyroid glands in the front of the neck. Indeed vagal nerve seizures is a part of some forms of epileptic seizures and is treated with a surgically implanted vagal nerve stimulator. A person has to have a diagnosis of intractable epilepsy or migraine headaches with treatment failures from trials of two types of medications before it is deemed medically feasible. For me, no epileptiform activity was ever detected in EEG sleep studies even though numerous convulsive episodes occurred during two different studies in two different clinics. I now wonder if they should have been watching the heart monitor not the EEG monitor when the episodes spiked. Changes in heart rate and other vitals can accompany a seizure. I have experienced this. Were these factors recorded but missed in my clinical studies?
Hopefully soon my experimentation with two different vibrating wands will stop these wretched seizure attacks altogether. I found 2 very simple devices that I could carry with me, experimented until I figured out which ones work better at a given time of day. The high-frequency wand makes me sleepy so I use it at night. The lower frequency wand is more effective during the daytime should I feel the symptoms of a pre-tic episode. How cool is this? Yes, I still need to avoid certain head-and-neck positions due to other cervical spine issues, get back into either chiropractic care or physical therapy, and review everything with my primary Doctor. I will continue wearing my specialized dental appliances. In the meantime, it sure is nice having a better option than Prednisone (which I can only take in emergency situations!) to bring real relief for daily involuntary head-banging!
Will letcha know really soon, Gentle Reader if this all leads to something GOOD. In the meantime, I am encouraged. And grateful. Thank you Lord, for bringing hope beyond what I can see once again. JJ
Just when you think you’ve finally gotten on the road to something good the path can be blasted with a tempest beast of a hurricane, sending you smashing to the ground without a life preserver or anchor! But do not despair. The Lord Jesus Christ is still on the throne precious one.
Isaiah 55:8 New King James Version (NKJV)
8 “For My thoughts are not your thoughts, Nor are your ways My ways,” says the Lord.
The close of our evening in the wee hours of the morning was exceedingly traumatic, puzzling, and desperate. This sure is a mystery given that I have had some better blocks of a few hours at-a-time now that I am 3 months into IV treatments with antibiotics for chronic Lyme disease. Even an iodine protocol and infrared sauna treatments appear to be promising adjuncts to my treatment plan. Ahhhh, so much progress has been made these past 4 1/2 years yet still there are plenty of wacky lab findings: we’re talking dangerously low amounts of key nutrients, hormones, and healthy gut bacteria. Yet I have less pain some days, improved clarity of thought, and an ability to do some housework or gardening about once per week. The days largely spent bedbound have diminished from 4 to 1! And my score on a chronic Lyme symptom scale has gone down from 73 to 46. These are good!
James 1:2-4New King James Version (NKJV)
2 My brethren, count it all joy when you fall into various trials, 3 knowing that the testing of your faith produces patience. 4 But let patience have its perfect work, that you may be perfect and complete, lacking nothing.
Some call setbacks that occur over a course of treatment “herxheimer” reactions. I call them a “healing crisis.” That is, until the particular breed of hell is so traumatic that extra healing is needed from the crisis itself on top of the serious illness. I’m talking about seizure attacks marked with screaming at the top of my lungs. Let’s add writhing movements lifting me off the bed as if embodied by a demon and intense, hysterical episodes of wailing with gushes of tears. What the heck is going on here? Flashes of terrifying scenes fill my “mind’s eye” alternating with the blackest darkness you can imagine. I press into the abyss with cries out to my beloved “Jesus” when I can, when I my mind allows me to do so. He is my only hope. Prayer mixes with shock. Breathing, prevention of injury, and concern for my hubby nearby fill any cracks in my thought processes when they return. Steve and I both leave the scene broken when the hell finally stops (tonight after over an hour had punched its way by us).
This all means that chronic/neuro Lyme disease is in my central nervous system and brain. This probably means that the treatments are now changing my neurochemistry and affecting the structures of my mind. This definitely confirms my worst fear that the path out of this hell to healing will be worse than the journey that got me here. So wretchedly sad. I guess I’ll just pray that the Lord strengthens me and Steve to get through it, pleading for mercy as we did tonight. Somewhere out there will be a message to inspire others yet again tonight that is not the case. This is a murderous mystery, killing every sense of sanity and magnifying many senses of suffering. I am o.k. in this moment, thankfully. It’s amazing what I can do sometimes on 2 hours of sleep just before the sunrise.
Psalm 119:147-149New King James Version (NKJV)
147 I rise before the dawning of the morning, And cry for help; I hope in Your word. 148 My eyes are awake through the night watches, That I may meditate on Your word. 149 Hear my voice according to Your lovingkindness; O Lord, revive me according to Your justice.
Hang with me, Gentle Reader. We are not giving up. We still have faith and still have hope. You don’t give up either with the challenges in your life too, k? We are holding out with the hope of blissful eternity for those in Jesus Christ and working our way back to the current day from there. The suffering, the trauma, the horror just makes for a better ending when telling a magnificent story. And when in my mind’s eye I also see the tear on the cheek of my Lord as He hung dying on a cross for me and you, I know that somehow, supernaturally, I will be delivered to a better place someday. How about if we meet there? So much goodness awaits us. I’ve really got to tell you about the Summerwine bush that is budding from where I transplanted it to my compost pile, ready for its new home this Spring . . . Someday it will burst forth into bloom (like me) once again! 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?