I'm not going to lie

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!

That was quick!

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.

Hyperparathyroidism = calcium trafficking issues? 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?

A bitter sugar solution

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.

  1. 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.)
  2. 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.
  3. 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?
  4. 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.

Dandelion Root Tea as an option for bitter tastes

The 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

The art of waiting

I should probably have gotten this together by now

But I have not. No I haven’t. I do try alright.

I’m just not that good at waiting.

Nearly sick with worry, I got the MRI results that confirmed

The CT scans I’d already had times two this year

But it almost didn’t happen; I’m still not right.

If there’s one thing I’ve learned it’s how to navigate

The healthcare system from the inside and out

This skill has helped some in this scenario.

The more important skill alas is not a skill at all:

The one that rests in the wings of my Father

And simply dwells, dwells, dwells.

Gratefully too, there are many bottles lying around

Such that when a flare results from dining out

I can deal with it within a couple of hours!

This is really hard, Gentle Reader. Some big decisions definitely loom

The horizon goes so many different ways at distances unknown

Testing everything we’ve done to date to get me well.

So just like when my beloved prepares to take to the skies

We’ll pre-flight the treatment and file some kind of plan

With prayer even if it takes all night.

The large bird of prey knows her strengths, she soars

But even she must stop to rebuild, to prepare

For the journey is open-ended alright.

Some labs decline diabetes while others bring suspicion alright

Of a serious disease, the kind that can kill you

If you don’t get it right.

At least the cyst appears compartmentalized and operable

To remove it seems the right thing to me

The scope to come is the first step.

No, I’m not ready to wrote prose yet, my thoughts too fragmented

Just know that I don’t want to die should it be a dreaded cancer

There’s more living to do just like our date last night.

Thank you Steve.

JJ Update

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!

Peomenade Park, Fort Wayne, IN
September 2, 2019