If we ever get the answers to the questions why, why me, or why not then we will truly have arrived in a place of peace. Will it ever be this side of heaven?
This side of heaven, life moves quite quickly. The agonizing wait for a package to arrive, bringing the compounded, whizbang elizir to remedy some malady, can be mind-numbing. It’s all you can think about. Then before you know it, you are opening the package and quickly moving on with the other tasks of the day. If only this would apply to a workup to rule out cancer . . .
My days are blurry now yet not without a moment of reflection: largely on how the year we just finished has actually prepared me for the lump that is on my plate right now. Or more accurately, 7 lumps. Ruling out autoimmune disease, being diagnosed with hyperthyroidism then switching back to hypothyroidism, placating the diagnosis of Functional Movement Disorder, ruling out hyperparathyroidism, and narrowly escaping a diagnosis of pancreatic cancer with surveillance puts 2019 on the map for me, so to speak. Every step of the way, my main concern was beyond the testing and treatments glaring on the surface; I was asking if this or that could be a cause of the more important strife in my life: daily convulsive episodes, my worst symptom.
Autoimmunie disease = Episodic Ataxia? Nope.
Hyperthyroidism = Seizure disorder of organic origin? Nope.
Functional Movement Disorder = Rehabilitation to resolve? Nope.
Pancreatic mass = insulinoma and blood sugar dysregulation that triggers seizures? Nope.
WTF is it then? Excuse my French and excessive use of metaphors. I am about to go mad and cannot use direct language anymore. How many near-misses can there be? The answer: at least one more.
A thyroid ultrasound just 8 months after one earlier in 2019 found SIX NEW NODULES with suspicious characteristics. Then there’s the hard one in my neck that didn’t go away with the common cold after Christmas. How can this be? Labs don’t lie but they certainly don’t explain this new, worrisome finding. It’s all I can do right now to keep from screaming while I research the good, bad, and ugly possibilities. Looks like at the very least, another Fine Needle Aspiration is indicated and will be completed under conscious sedation due to the seizure attacks that come with needle sticks. My only saving grace in this hot mess is that at least I don’t need to be awake this time when someone in a white coat puts a very long needle in my neck. UBER-EWWWWWWWW!
Someday to preserve the remainder of my sanity, I will list all the treatments, dietary habits, rehabilitation strategies, lifestyle changes, mold avoidance, and medical management that I do because some professional said it would help me. The list is burdensome. And expensive. But nothing compares to this. I have never had major surgery before let alone a bonified diagnosis of cancer. My heart races with the potential implications, my mind numbs the rest of the way after pressing on to complete some volunteer work on the computer, and of course I am hungry . . . again! If only I had taken that walk with the pup when she was whining so loudly this afternoon. I really should have, even in the freezing temps looming out the front door.
I talk to the Lord all the time now. It’s like breathing a prayer all day long. He’s here with me alone at this computer, this I know. Graciously, my beloved is more tender and sweet of late than any day prior in this almost 9 years of battling serious illness. I am so glad for Steve. Life’s skirmishes over here are about to escalate to battle and war. We both can feel it with the data on the ultrasound reports.
My, how quickly things changed. But like Barry Manilow once sang, could this be the magic at last?
While it may be time for celebrating a Christmas holiday, preparing for the new year about to begin, or maybe completing something else on the “to do” list, one thing is for sure: it’s not my time to go yet. But what does it all mean?
Sunday was a particularly difficult day. Taking a particular anti-viral medication in the wake of a return of shingles left me with few options other than continuing it for awhile longer than in the past. I had just sent a message to my Doctor via the patient portal at our local health system asking if he would he extend the prescription? He agreed. But what was I thinking anyways?
Considering it a good idea to add a a supplement that fights viral infections, two days prior I had added a low dose of one about 2 hours after the dose of the prescription medication. That was a BIG MISTAKE. Within the hour I would begin what would become a day and one-half in bed with on-and-off convulsive episodes. Holy cow! Here we go again! Was it die-off? Overdose? Redistribution of toxins from another source other than that which I had intended to target? Who knows?! The result was disastrous. Too bad that the weather was very mild and sunny for a December day; my hopes to get outside and take the pup for a walk were trashed. Hubby went for his 20-mile cycling ride. I had to stay in bed, taking 2-3 hour naps after any activity such as making a meal. Another weekend was LOST to factors of illness.
Perhaps it is exhausting to be battling FOUR infections at the same time? Indeed it is. Yet that is exactly where I find myself: 3 strains of herpes infection (zoster plus the reactivation of EBV and HHV-6) in addition to a MARCoNS sinus infection. Treatment for the latter has included a complexity of rotating nasal sprays and rinses. I was nine days into the treatment of shingles with famcyclovir TID. Yes, shingles had flared up for the third time in as many years, this time with severely itching and burning lesions on my upper back. Increased fatigue was profound. As the days wore on, the convulsive episodes appeared to be coming down again as well as reactivity to sensory stimuli. It seemed like progress. However, this trending did not last beyond that extra dose of an antiviral supplement called Lauricidin.
Evening came and my saint-of-a-husband had already helped me with a couple of rescue remedies in the afternoon. He lain beside me as another episode ramped up, this one more aggressive with guttural utterances that were as frightful as they were embarrassing. Seizure spikes and vocalizations emerge much like vomiting does during the flu. It just comes out of you and there is nothing that you can do about it. One arm shakes repetitively so fast that you think you will either sprain something or fling a hand right off the rest of the extremity into the air . . . then a leg on the opposite side repeats the pattern about 9 inches up off of the bed! Try to cover up to stay warm and just the initiation of movement exacerbates the intensity of the convulsions, sending my body further out of my control. I gasp for air then pant vociferously lest I pass out for a lack of oxygen. Then the pattern cycles again with new, involuntary movements that send my head and neck into spasm, along with great pain. I could not even grab my neck this time to protect myself from further injury. A headache follows every time.
Tears pushed out from my face with weeping when I could breathe more than a couple times in a row. Somehow I blurt out to Steve to please pray. These episodes have appeared demonic more than one time in the past and I sensed that could be the case on Sunday night as well. It was just too frightful to be a simple seizure. Precious Lord, why do I have to be awake and witness this hell, burning it into my memory then try to function sometime later as if everything is alright again with the world when it certainly is not? It’s like an abusive trauma that repeats over and over again so that your spirit never can heal, always remembering, always fearing its return. I may never know the answer to questions that I have asked, researched, prayed over with THOUSANDS of convulsive episodes over 8 years of chronic illness. And grievously, dozens of the episodes have been really dark ones like this one. But only 2 have been true near-death experiences.
My breathing got shallower yet I was not gasping for air anymore. The room was already dark from Steve turning out the light for me to decrease sensory stimuli; my vision was dimming further as I felt my very life closing in on me, my left eye pulling shut on its own. I started to feel as if I was leaving my body and wondered if I would pass out before my breathing would stop altogether? Is this how it works when people die in their sleep? Or does their heart stop beating before they gasp one last time for air? Do they know what is happening and does it terrify them when they cannot stop the train wreck from reaching its fatal impact? Why did I seem so far away in my mind’s eye yet still feel the painful stiffness of my weary frame shoved into the foam topper on the bed?
Somehow I became aware of my beloved lying behind me and blurted out my final goodbye, “I love you Steve.” He replied, “I love you Julie.” It’s all I could say. Then I saw him in front of me. Well not really but in my mind’s eye, I saw the archangel Michael coming for me. He told me to follow him and drew me away from the present tense towards another dimension of space and time. “Follow me,” he repeated. I saw no white lights as the scene was actually rather dim making it difficult to see anything else but the back of his right side as he turned to lead me away somewhere. I didn’t ask where, I just “went.” Then I became aware of another figure. This one did not show me His features but I knew Who it was. It was Jesus. He looked at me for awhile with tenderness yet directness all the same. Time did not stop or move forward . . . it simply was not there. It appeared that some sort of evaluation was going on or maybe it was some sort of test. I had no thoughts. I just waited there before His presence.
Then my Lord spoke. “It’s not time yet.” I wondered in my spirit what He was talking about? I couldn’t process the words. I actually do not recall breathing just then. By this point, Steve had reached his arm around my waist to check if I was still breathing. He would tell me later that he was wondering in this moment if I was going away for good? The seizing had stopped. I had become unusually quiet. And I had stated the phrase that many people say before they take leave from this life: to express their love for the ones in life they hold so dear. I do recall hearing him sniffling. At some point, he got up to blow his nose. I was becoming aware of my surroundings although still engrossed in the encounters I was having: quiet in my spirit, listening submissively, starting to realize how similar the present reality really is to that of an eternal one. THEY ARE ONE AND THE SAME. I had felt myself “leaving” but never felt separate from my body per se. What was happening to me?
Michael led me backwards, fully back into my fragile frame and the place of brokenness where I have spent tens of thousands of hours, there on our bed. I wept deeply. Bitterly. Tenderly. To the point of emptiness. I took inventory of my self, my situation. Where am I now? Let’s see, I am still lying here and yes, still breathing. Steve is still here with me and the room is still dark. I am not convulsing anymore. I am finally warm. My body feels war-torn with pain throbbing from every joint, burning flaring in the tips of my toes and fingers. (That burning is an indication to me that these episodes are a medical crisis yet to be solved as it has a name: peripheral neuropathy. It gets worse during and after episodes.) My mind was too empty, too traumatized or maybe in shock of what I had experienced to say anything aloud. I just had to dwell there with my beloved for many moments before I could re-orient myself to life again. I wasn’t 100% sure that I was back in the world yet.
Finally I asked Steve, “Am I still here?” “Yes,” he said quietly. He would later say how grieved he would be if he had lost me that night. His eyes reddened and we both cried on the inside, me crying all over my face as well. Eventually I asked him if he wanted to know about what I had experienced and he did. He believed my story. Something had stirred in his spirit as well. I believe that is why he reached out to check if I was still breathing. We didn’t and don’t really now how these things work, the Biblical perspective on near-death experiences, nor what it all meant for our lives together. Does this mean that I am cured now of the seizures? Did it mean that I would now be free from demonic oppression? Did I really have an encounter with my Lord and Savior, Jesus Christ, or was it some cruel trick by Satan and his minions? If it was a test ordained by God, did I pass?
I crashed into a deep sleep for a couple of hours, even though I had slept or napped most of that day. I woke up in the middle of the night ravenously hungry with gunk in my nose, forcing me to get up to do a nasal treatment and make some food. By the time I was done with all of that, I was wide awake and it would take hours for me to get back to sleep. Too soon I would need to be awake for a medical appointment, some errands, and a visit with the first of Steve’s family now in town for the holidays. How in the world would I do all of that on THREE HOURS OF SLEEP, an ENTIRE WEEKEND OF SEIZURES plus a NEAR-DEATH EXPERIENCE? By the grace of God, of course. And so I did. I made us a fabulous breakfast and did everything I needed to do, albeit loopy and somewhat forgetful in a health food store later that afternoon. It was over 18 hours before I could get back to bed again . . .
I have come to see that time and eternity might not be that different from one another. We measure time with our watches but our Lord measures our hearts within the experiences He ordains for His purposes. I need to reflect and study all of this some more. How I managed to get my errands done plus a short-and-sweet visit with Steve’s family is beyond me, perhaps supernatural. The day after was a mixture of sleep and a return to sickness with a terrible seizure spike right before I was hoping to go to a Christmas Eve church service with Steve and his family. It didn’t happen. Dang. Very sad. One thing has became very clear though: I am done with famcyclovir! My time on that medication is NOW OVER.
The rest lies at the foot of the cross with my Jesus. After all it is Christmas: when we celebrate His victory over death with the miracle of His birth. Maybe there will be a miracle for me too? JJ
When I was ruminating about how to manage some new symptoms, I stumbled upon the benefits of unsweetened bitter herbs in balancing blood sugars. This discovery has helped manage some wild fluctuations but it is not a fail-proof strategy. I still bottomed out yesterday with seizure attacks at the kitchen table about an hour after following this new sequence. My beloved had to feed me while I shook, leaning precariously on our glass dining room table. It hurt. This situation is still hell.
It’s clearer more now than ever before that the swinging of my blood glucose levels is contributing to seizure attack episodes and the difficulty managing both of them. The endoscopy ultrasound (EUS) this past week found a particular type of pancreatic cyst, pre-cancerous but one in which surgery is not currently recommended. So while I grasp the magnitude of what a 6-month surveillance program looks like for the potentially deadliest of cancers, I am dealing with yet another new diagnosis: pre-diabetes. Say what? Tis much to bear right now.
I’ve spent most of my adult life managing “borderline hypoglycemia” with diet. This means no concentrated sweets, higher fiber foods, protein-rich snacks between meals and only low-sugar fruits with the baseline concerns of dairy-free, gluten-free, low-medium oxalate, largely organic/non-GMO, and lower in the categories of red meat and night shades. Whew. It’s a miracle that I have found anything to eat at all! Or that I have not gained a ton of weight when battling serious illness these past 8 years. Food is fuel and there are now more specialized products on the market from which to choose. Thank you Lord! “They say” that hypoglycemia can turn into diabetes sometime in a person’s life. I also understand that pre-D can be reversible with lifestyle changes. O.k., so let’s go for that option.
Still I have come to the end of my ability to figure out what to do now. The Docs say that the pancreatic cyst, even though it’s in the organ that manages blood sugar for the body via insulin and glucagon, has little to do with blood sugar difficulties per se. Full blown diabetes is associated with a greater risk of cancer when you have a pancreatic cyst. What about pre-diabetes? “I can refer you to a dietitian if you like,” said the Nurse Practitioner in the gastroenterology oncology department. Why sure! What else have you got that I haven’t tried already folks? Exogenous ketone supplements without the sweeteners? I’m on it, however even the ketogenic diet under the direction of a hospital dietitian didn’t help me two years ago. Too much fat these days triggers belly pain anyways. Tough challenge for sure. Referral is now pending.
Call me cynical because I am. I am in shock. Thankfully there are Facebook and online support systems, even apps for these diagnoses so I will avail myself to them. The isolation of being home alone dealing with all of this is crushing however. I tried leaving the house the day before the EUS procedure to get some errands done and came home really messed up. I always carry a lunch bag of special foods and water with me when I leave the house. And now it’s just not enough. I’ve reached out to my Doctors at Mayo Clinic to see if there is more expertise out there on these matters, particularly in connection to the seizure-like episodes. I cannot get into see an endocrinologist locally until JANUARY!
I just don’t know what I don’t know right now. Are you working Your plans somehow through all of this my precious Lord? Help me Lord! JJ
P.S. My new favorite snack is Hippeas Himalayan Happiness
This is going to be a bit of a brain dump: loosey-goosey around the edges, without footnotes, and incomplete in research to back it up. For now, that is. The bottom line is that I am more hopeful than scared that later this morning, I will undergo an endoscopy ultrasound (with fine needle biopsy) in a local cancer center with a top specialist in the Midwest. Because for me, blood sugar issues may have been festering if not causing my worst symptom in this 8 years battling serious illness: daily convulsive episodes. The episodes are worse when my blood sugar has peaked too high or too low. I am more vulnerable to a plethora of triggers when I am hungry; it is possible that I may not have even been aware when it was low blood sugar and maybe not hunger that was the underlying issue. And just 2 days ago, I figured out a way to manage it despite the cyst in my pancreas wreaking havoc on the normal order of things. No, not insulin. No, not glucose tablets or the like. So what can you do to quickly lower blood sugar without drugs?
Drink unsweetened bitters after eating!
Here are the three biggest discoveries that have helped make this strategy successful for me this past week, even when very sick.
The tongue and gut both have taste receptors. These receptors recognize sweet, salty, bitter, and sour tastes when the food touches one’s tongue during eating. It is the work of Dr. Jason Fung, alerted to me by my chiropractor, Dr. Lee Nagel, that showed how the body reacts to the taste of sugar as soon as the sensation is detected. The body then stimulates an insulin response right way, beginning a cascade of events that goes well in folks with normal metabolisms -or- triggering various disease responses in folks with hyperglycemia/diabetes or even hypoglycemia. This finding about taste receptivity changes everything we knew about managing blood sugar through diet: from being about TASTE in addition to CONSUMPTION. Dr. Fung advocates an extremely low carb diet, advancing to the ketogenic diet if possible. (I have tried both with marginal success for my worst symptom, yet continue with the former anyways.)
Bitter food receptors can initiate its own cascade of events. The literature shows how bitter foods and supplements can be used to help manage respiratory diseases. Incredible. Those of us familiar with various detoxification protocols know the value of bitters in the forms of liposomals and tinctures to stimulate bile flow. They are also used to support the kidney. But what does this have to do with blood sugar? Enter here the finding that the bitter taste may in fact be THE DIRECT OPPOSITE of the sweet taste! How is that possible if the tongue divides taste receptors into 4 equal quadrants? Maybe check your Bible to see how the Lord used bitters and sweet tastes as opposites like dark-and-light in Isaiah 5:20. Twenty-five hundred historical facts have never been refuted in the Bible since it was written over 2,000 years ago. Seems plausible to me that this metaphor, given to make a point about good-and-evil, might know something about the way our bodies were crafted as well, enough to use bitters and sweet tastes in an analogy that has a timeless uses for us, for me today.
Stimulating the liver with a bitter herb may very well play a role in balancing the effects of the pancreas secreting insulin. We know that the liver stores and releases glucose. This gets triggered with the release of glucagon from the pancreas (opposite of its release of insulin) and a complex sequence of events that I need to research further. In the middle of a waking seizure attack a couple of nights ago, I had a choice to make. A) Take a bit of honey to raise my blood sugar that I assume was low and hold on while nausea followed, knowing that a) I could not tolerate anti-nausea medication and b) would have to convince my exhausted husband to bring me a complex carb/protein snack to prevent a crash thereafter. It was after 1:00 a.m. In a moment of inspiration, I thought about the liver and kidney detox products that I have used and the relationship of the liver to the pancreas in diabetes. I was just diagnosed as prediabetic! What if I B) used bitter tastes to stimulate the liver? Would stimulating the liver to produce bile flow also somehow release glucose without triggering a merry-go-round that happens when taking oral glucose? What if it’s the swinging of blood sugar levels and not the high or low endpoints are what triggers this hell?
Drink a hot cup of plain, roasted dandelion tea, even if you need assistance and a straw. Result: within 90 seconds, a 30-MINUTE CONVULSIVE EPISODE, after a series of prior episodes, STOPPED AND NEVER RE-STARTED. Holy cow. Praise the Lord!!!!!!!!
Alright now. Was this bitter tea thingy just another rescue remedy to add to the list? Prednisone tops the list from multiple ER visits as often stopping the worst episodes. But doesn’t Prednisone raise blood sugar? Maybe it’s no wonder then that taking it didn’t always work for me. Maybe it was helping with some kind of inflammation somewhere . . . I usually took Prednisone with a couple of crackers which is a simple carb. Sometimes the episode stopped and then restarted again. When it did stop, I was usually ravenously hungry. While I still can’t track everything with direct cause-and-effect, it has been becoming clearer the last few days that fluctuations in blood sugar plays a significant role in this mysterious illness that has stumped dozens of medical, chiropractic, genetic, orthopedic, alternative, dental, functional medicine doctors and professionals and me too. Suddenly I had something new with which to experiment.
I tested out the use of bitter tastes to bring down blood sugar after a meal, even in the presence of a wild card: a pancreatic cyst. I found that if the bitter taste was taken WITH a meal, it made no difference. I found that if the bitter taste was mixed with a sweet taste, even an artificially sweet taste like glycerin, it made no difference. (I read that persons who are diabetic and in a hypoglycemic crisis are instructed to take glucose every 15 minutes, checking their blood sugars, until their meter reading come back into a safe range as determined by their doctor.) I found that taking a certain amount of an unsweetened bitter taste, 15 minutes after a meal CORRECTED THE BLOOD SUGAR SPIKE. My blood sugar came back into a normal range and the shift began as soon as I could taste the flavor on my tongue. The pre-tic symptoms of a convulsive episode would not completely stop with just a taste; I needed to consume the amount of the bitter product that worked for me, within a minute, and re-test my blood sugar 15-20 minute later. The results were sustained until I became hungry again 3-4 hours later. Barely a tic zip squeezed through for the next 2 days.
So an unsweetened bitter solution brought down elevated glucose quickly for me, even in the presence of a pancreatic cyst, without insulin. Holy cow! But what about the role of the pancreatic cyst? Later today, Lord willing, we will find out more about what it is and if it is playing a role in my health. Is it an insulinoma even though I do not meet all of the lab criteria? Is it a neuroendocrine tumor that is pre-cancerous or cancerous despite the fact that it hasn’t changed in size over the past 10 months? Is it a pancreatic pseudocyst that can have either no impact or a myriad of impacts on the function of the pancreas depending upon its location? And most importantly for me, will the fabulous gastroenterology specialist, renowned for introducing new procedures here in the Midwest and specifically at our new, local cancer center, be able TO REMOVE IT TODAY? Of course, I want it outta here!
In the meantime, a lunch bag with a low-carb meal and cup of roasted dandelion root tea will be waiting for me when I wake up from my procedure aka chemically-induced nap. Thereafter we shall praise the Lord for a simple tool that helped me and my beloved hubby, Steve, cope with the last grueling days of waiting for this moment to come. Thank you Lord for your sustaining grace these past 8 years. I pray that your hand works through the skilled doctor today to heal me. Thy will be done for Your glory my precious Lord. JJ