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

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

A new answer to another question I did not ask

Life never ceases to be an adventure if that is the perspective you choose.

Perhaps an underlying theme of the Hope Beyond blog when it began would have been, “the plot thickens.” Or “deadens.” Flash forward about 7 years since my first blog in August of 2012. At my current stage of recovery from serious illness and a turn for the better-but-not-done-yet, I’m going to attempt the theme of “a new adventure awaits.” How is that for positive thinking?

A little trellis project almost 11 years in the making gets completed this weekend! Yay God!

I haven’t written in awhile. Since March of 2019, there are more moments of functioning better each week and I am taking advantage of them. There are also more very long naps of which I am forced to take advantage as well! The the new direction in my healthcare of getting off of thyroid medication created some problems then had an unexpected turn when parathyroid issues were discovered. My labs in both and related camps are all over the place, making for a Peter Faulk’s, Columbo-style of in-depth investigation raise more than one eyebrow of intrigue. Could there be another causative factor to consider in the convulsive episodes, requiring its own investigation? Yes, it appears so. Sure could be possible that the thyroid nodules, albeit shrinking, hid parathyroid tumors that are additional culprits in serious illness. Both hyper/hypothyroidism AND hyperparathyroidism can explain my clinical presentation. It appears that I am dealing with both. Who knew?

Well the Lord knew all along, the factors and their purpose for a nearly 8-year derailment in life as I once knew it. I am beginning to see that everything I have learned to date has NOT been wasted. I would not be able to respond as quickly to new information if there were still dozens and dozens of other medical conditions to rule out or address. I would not have a deep compassion for those suffering chronic illness today. My faith would be weaker and very likely my marriage. I could go on.

Very few folks have had as many medical tests that I have had, even in the community of persons dealing with chronic illness. Some folks stop after medical professionals label you with depression or anxiety. And if a person persists with extensive testing, very likely it’s peppered with questionable, even dangerous energy techniques akin to quackery. Thank the Lord that I didn’t spend very much time with energy medicine. He let me see the demonic influences and/or lack of science then helped me get away quickly thereafter (e.g. Rife treatment using sound and light frequencies hurt me badly.) Other times my Jesus simply closed the door to a promising yet deceitful avenue even before I was tempted to get near it (e.g. tai chi and yoga). This was very difficult at times when I felt desperate in my personal hell or conversely, when the testing and treatments were recommended by my brothers and sisters in Christ. I simply had to decline with blind faith even if that decision appeared to prolong my suffering in their eyes. Very tough road indeed.

Today I welcome the new answers with more of a sense of adventure than fear. Will I need neck surgery if a parathyroid adenoma is discovered? We are not sure yet. My labs don’t fit the typical profile and I have been in that camp dozens of times before. But when 1) both cardiovascular AND osteoporosis can be related to both thyroid and parathyroid anomalies and 2) calcium trafficking/dis-regulation problems can contribute to neurological symptoms, then it seems logical that both would need to be addressed. Incredible. Separate body processes in which anomalies can be the root cause of disease in the 2 different organ systems. And to think that this new adventure would have never happened if I had not gone to Mayo Clinic in February looking for answers about autoimmune disease. But there is no AD. Maybe not even a Functional Movement Disorder. Just another new answer to a question I did not ask. Holy cow! JJ

Psalm 34:8 New International Version (NIV)
Taste and see that the Lord is good;
    blessed is the one who takes refuge in him.

Changing seasons, changing gears

As the winter loses its harshness on this second day of March, so have I. Seems that I am letting go of a few things inside and out as a change of season has landed on our doorstep . . .

Our trip to Mayo Clinic ended with a focus much different than the one we had when we arrived. Briefly, the expert neurologist informed us that my labs that I had painstakingly collated from home were “garbage,” that my problems appeared to be psychiatric, and that further testing would be a waste of money: we see 150,000 people a year in the Autoimmunity Clinic. You don’t have it! A second neurologist expert used more functional terms yet still claimed that “even a 3rd year medical student knows the difference” in the various differential diagnoses. So we (my healthcare providers to date + myself) are idiots? So it seemed as we entered the weekend in Rochester, Minnesota . . .

Six days after that first appointment, the shock of what they were telling us had worn off. The exhaustion and soreness from extensive lab testing, EEG, lumbar puncture, and 5 additional consultations gave way to a new direction in my ongoing recovery from a serious illness. It was a tough mental journey while literally trapped on Sunday in a Minnesota blizzard but I did get there. First, on Monday an Endocrinologist determined that I was on too much thyroid medication and it could be contributing to my symptoms. Holy cow! The new medication was ordered that afternoon and sent on its way to our home address. Days later, the adjustment process is both rocky and underway.

Second, the physical rehabilitation department has a special program for what they term a “Functional Movement Disorder.” The physical and occupational therapists retrain the brain using specific balance, breathing, and movement techniques within the context of stimuli for me that trigger my convulsive episodes. Interesting. A trial run of this approach was horrific! In retrospect however, I recalled an evaluation in a local Balance Center 2 years ago and treatment that was recommended for a “Mild Vestibular Disorder;” it was also horrible and I couldn’t do it in tandem with other treatments my Doctor recommended at the time. The Mayo Clinic staff say that their approach is different so I decided to begin their PT and OT home programs regardless. What if it helps? In 3 days since then the convulsive episodes have not yet changed but my balance is improving! Yay!

I don’t have an autoimmune disease as defined by the Mayo Clinic. My labs are also negative for various infections and inflammation, glucose and other markers for which my blood and cerebral spinal fluid were tested. But some other labs are waaaaaaaay off and those are the ones in focus right now. If I can progress in my home exercise program, and I suspect that I will do so quickly, I have the option to return to Mayo Clinic for a 5-day intensive Functional Movement Disorders Program. Perhaps within a couple of weeks I will know if this Program will be effective for me: if the techniques begin to change any aspect of the episodes then, Lord willing, I hope to return to the Mayo Clinic. By then my thyroid status should be moving in a better direction as well. It’s all good I guess.

Funny how enduring very early morning appointments under duress in a strange place with 1-2 hours of sleep painted a much different picture of me to these clinicians than what I am presenting now! Tonight I still feel depleted yet my stress level has gone down significantly. All of the laundry and unpacking is done along with the myriad of things you have to do after returning from a 9-day medical trip. (Our trip to Mayo Clinic was extended twice to complete all of the consultations recommended and requested.) The expenses were immense and we haven’t even seen the medical bills yet! (Did I mention that the water heater needed replacing 3 days later? Ugh.) Still I am stabilizing and in a better place than when I was struggling to just breathe 2 weeks ago.

The seasons are about to change and the gears of treatment planning for me are moving forward as well. Gentle Reader, you know my mantra will remain that Lord willing, I am going to get well! And to Him be the glory! I am grateful that Steve and I got to go to the Mayo Clinic and learn so much on so many different levels. What other levels you ask? Well that will be a bit o’ prose for another day of course. Until then Godspeed my friends, JJ

Countdown to Mayo

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!

The little city that comprises Mayo Clinic: most buildings and surrounding businesses are connected via the underground Subway Level. You may never have to go outside in the cold!

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