Too many directions are no matter to Him

When the movement forward becomes murky from the treatment that sent me sideways

When the latest result became a scare not for cancer but still not not quell my burning question

When the past perks up and says hello, by the way, can you spend some time over here with me?

When the fog settles all around you, nightmares rob your rest, and things look worse but they really are not

You run to Jesus my friend.

Where did the money go when a gift seemed like it would settle all accounts again and again?

Where do you turn for comfort when isolation has become your friend and this is your normal normal?

Where do the roads lead that seem to have no arrival of merit in space, of substance, in meaning?

Where does the time go when it is no longer measured by the hour but the task of survival sun up to sundown?

It all goes to Jesus my friend.

Why do prayers seem to go no where when surrendered by obedience yet are tethered with strands of the unseen?

Why must suffering continue ad nauseum, day without end, manifesting in new ways over and over again?

Why didn’t I have a happy childhood such that my years reinforced it rather than set the little one inside free?

Why does the Lord delay in making it right for those who groan worse than I ever will?

Because He is Lord my friend.

What a day it will be when we know the answers we seek, when the glory is replete for all to see

What a treasure we will behold when the whys matter less where we put them and there’s perfect peace

What am I doing pining for that day to come if I can choose to dwell in His goodness now?

What witness will I leave until my own days have their end, my talents can no longer shine?

For He’s beyond what you see my friend.

You just don’t know what you don’t know

I’ve got 2! How about you? Ugh.

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

HIPPEAS Organic Chickpea Puffs + Himalayan Happiness | 4 oz, 6Count | Vegan, Gluten-Free, Crunchy, Protein Snacks

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

More arrows pointing at a target

Seems like there are more arrows pointing at the same target this time, but will the archer get it right? You know, the one in the white coat with the big degrees, fancy knowledge, and ticking watch?

doctor, stethoscope, diagnosis, pancreatic cyst, EUS, endoscopy ultrasound, insulinoma

Too bad that it was me and not one of them that pointed out that the pancreatic cyst mentioned on the CT report still needed some kind of follow-up! But maybe it’s alright that things happened in the order in which they did? At least my 32 year relationship with thyroid medication has ended and removed one more factor in an equally puzzling dance with hypoglycemia.

Peripheral neuropathy, heart disease, hypoglycemia, insulin resistance, pain, nausea, and a pancreatic cyst were all written down but no one put them together in the same story until I brought the report to my Doctor on September 11th. Let’s add daily seizure attacks for 7 1/2 years shall we? You know, the ones that we recently discovered can go away sometimes with a blast of sugar? The glucose monitor doesn’t scream answers yet as to why this occurs and how to manage it, try as I do, but some other labs are finally leaving clues.

An MRI and MRCP are behind me and an endoscopy ultrasound (EUS) shall commence but not a 72-hour fasting blood test (used to diagnose a particular type of pancreatic mass associated with hypoglycemia). Oh well. We opted for the local specialist to evaluate me but he only does the former test not the latter. I just hope it wasn’t a mistake NOT to return to the Mayo Clinic and the Pancreatic Clinic this past week. Travelling there is a big deal and trying to get home after procedures is a bear dontcha know.

I’ll try not to ruminate about the potential for pancreatic cancer and hope that this miraculous little finding is ordained by God for a time such as this, to point the new “archer” to a cure for my worst symptom. Who knew that these days when you have hypoglycemia they look for a cause? Decades ago the medical folks just had me eat small meals of particular food combinations; “it may or may not turn into diabetes someday” they said. Similarly I have seen just this year how medical treatment protocols change! Yes, thyroid nodules have not been treated with medication since the protocol changed in 1986! The researcher of that study turned out to be my endocrinologist at Mayo Clinic in March, starting me out on a plan of action that ultimately calmed my fried nerves, weakening bones!

Keep your eye on the ball I keep telling myself. One step at a time: live around the nausea, pain, and increasingly unpredictable convulsive episodes. Figure out what to eat. Cancel plans with your husband and stay home where it’s safe. Yuck! Venture out when you can regardless of how you feel. Keep up with the IV fluids every 2 weeks and take 2 cherries before bed in case the sugar spike prevents the episodes that meet you there every night. Then try to sleep knowing that the tempest beast who has ravaged your neck and back and head thousands of times before is lurking before you fitfully pass out by morning . . .

This hell. The joy is gone. And yet as I have stated to myself before in the words of Moody Church pastor Erwin Luitzer, “when going through hell, don’t stop.” Count your blessings including some new ones here at home; embrace your beloved hubby dear who loves you so. Dwell in the presence of your Savior. Reach out to friends in Christ. Talk to Jesus . . . He is here right now, back there, and out there too.

Twelve more days will have passed and chemically-induced rest for the EUS will be here soon enough. You got this! 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.