Survival is not the only goal

After 4+8 hours of sleep, initial breakthrough seizures, and simply being back in our mold-safe home, I am weak but stable again. The nightmares are gone; body pain and blood sugar are coming down. So glad that this trip and Thanksgiving week are behind us.

I could question if I should have gone at all to Arkansas; last year I was too sick to go and turns out that this year was not enough different to try. Eight hours of seizures on Wednesday alone was devastating! I simply cannot be around known water-damaged buildings despite precautions; I did not go inside. I am too early in basic mold treatment (that I can finally tolerate) to test it out. I don’t know if I will ever fully heal enough to go into known water-damaged buildings to visit loved ones. I should have stayed home.

While this trip was a disaster at many levels, I came away from it clear that insults and false accusations are unacceptable from anyone at any time. This serious illness is real and it’s called Chronic Inflammatory Response Syndrome. Confronting evil is required (and I did so) yet it can still be disastrous when you are sick. Simply stay away, basking in the protection and saving grace of our Lord, Jesus Christ. Let Him fight the battles ’cause we humans will fall short.

In due time the trauma and drama of battling serious illness will heal. And the Life that once shined from within me will return. It is not here in these pictures of me and my beloved by the campground Hot Springs Arkansas.

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.

Who gets this?

Don’t be this gal!

There have been many times when skills above being a “patient” have helped me navigate the mess that is our American healthcare system. While I am better understanding what it means to be pre-diabetic for example, I am convinced that it takes at least some college education to get the basics done! The following skills are critical.

Organization

Get lots of manila folders in January every new year and label them by categories that make sense to you. For me that means Medications/Supplements, Clinical Summaries, Insurances, Test Results, and one for any new, major diagnosis. Then I have a master notebook with the latest test results that I developed in preparation for a comprehensive evaluation at the Mayo Clinic. While most major healthcare organizations have online patient portals with all of our test results, sometimes your provider (Doctor or other skilled professional) will not be able to access them. Streamline each medical consult by having copies of pertinent reports with you at each appointment. This is particularly true when crossing over from one healthcare organization to another to see a particular specialist. GET YOUR OWN COPY of scans on DVD and go to medical records for the paper reports after each major test, test procedure, or medical procedure. Consider scanning them into Word files for when you are communicating with providers online. Searching for test results on your smart phone via the respective organization’s patient portal could be helpful but you will waste precious time with said provider. Your appointment may be over by the time you log in and access the data!

I first learned about organization when organizing ceramic molds for an occupational therapy department in a mental health hospital as a high school graduate. The patient groups ran more effectively thereafter and my supervisors were thrilled. As time went on it became clear that my love for office supply stores, blank CDs/DVDs, then little thumb drives were good things.

Put Stuff Away

For us, each year of non-medical records gets put into the same box as the same year of tax records. We keep only the past two years of tax record boxes in our home office and the rest go into the attic. After seven years the boxes can get shredded, burned, or otherwise destroyed (if we ever get around to it!). Pertinent folders relating to test results and medical conditions get filed in 4-drawer file cabinets that are alphabetized. Yes, this includes if our files spill-over into more than one file cabinet (as we have 5 of them!). A to C now takes up just one of these cabinets and may change when folders that are no longer needed will get purged. Yes, we don’t buy more file cabinets anymore; I just purge outdated information at least annually and especially when there is no more room for new records. Think it is outdated to worry about paper records? I disagree. There will always be important mail, receipts, reports, legal documents, and other pieces of paper to manage.

Any documents stored on our desktop (or laptop if we had one) should get dumped into an extra, external hard drive (our preference). These can be programmed to backup automatically weekly or to a cloud service in real time.

The importance of filing paperwork for quick access became a critical asset just 2 months ago that could serve to extend my life. I was filing some CT scan reports one weekend when I noticed that NO ONE had followed up on the finding of a new pancreatic cyst. This type of finding requires swift and specialized follow-up which began two days later. I am now in a 6-month surveillance program to make sure the particular type of cyst does not advance into cancer (that is highly fatal). Keeping-and-following good records is as important as the healthcare you seek and doing so could save your life!

Take Notes

We all probably have our favorite place to record information, whether it is on a smart phone app, calendar, daily planner, etc. The key is to be consistent: use the same method all of the time. My Mom was the queen of taking notes on partial slips of paper scattered on the back half of the kitchen counter! Her address “book” was a drawer beyond the sink filled with torn corners of paper, some tucked into the address book with a rubber band around it and some just stacked above or below it. She took out the piles each December to write her Christmas cards and vowed to update the address book before the holiday returned the next year. She never got it done. It was through these handwritten notes we combed when she passed away to make sure that important people in her life were contacted. And it was only then that I came to appreciate seeing her penmanship on pages yellowed, torn, stained, and re-used, that her system really did work for her over her entire life.

Date everything. Write down who you talked to and the phone number you called. Record the prices quoted, deadlines, and most importantly: what to do next. This way the next time you see your note-taking system on a particular topic, you can pick up and continue where the activity last ended. My Mom was an office manager and would probably find me to be a bit compulsive to include all of these data points in my note-taking and filing systems. But I submit to your that our healthcare and the complexity of life require it these days.

I learned the importance of good note-taking when trying to get some specialized cranio-mandibular care covered by any one of 3 insurance companies. I spent dozens and dozens of hours with what became a 2-inch thick folder of notes, letters, and statements accumulated over a year and a half to account for over $5,000 in out-of-pocket charges. I just knew that if some of the charges were coded correctly and sent to the correct payer, we could get such specialized care covered. I was wrong. We have received around $300 in reimbursement! I didn’t know that nearly all of my efforts would be wasted when the original provider offered to help but would not bill insurance directly . . . then did bill two of them . . . using either incorrect or out-of-date codes . . . over and over again. It was a nightmare for all of us involved.

As I write this, there’s a pile of 5 1/2 pages of billing statements, flyers, and notes stapled together and sitting next to me covered with handwritten notes regarding some new medical equipment. So the saga continues yet already I have had $20.28 in charges reversed. Along the way I asked to talk to a supervisor. Yes, I’ve learned who gets what done, aided by my 30+ years working in healthcare myself followed by 8 years of battling a serious illness and its subsequent paperwork. Organize, put stuff away (but not without looking at them first and periodically thereafter) and take notes. Then blog about it or comment below. I’d love to hear from you Gentle Reader. :JJ

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