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

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

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

One more time

A new specialist, a new gathering of papers

This is getting old already . . . not to mention the seizure attacks around 11:00 pm last night. Or is it still tonight? I digress.

A different role, a place all too familiar

As the rest of our lives carry on with big news: hubby passed his FAA oral and flight exams! Just like that I am the wife of a pilot, again!

Alas the doldrums of daily routines still carry on

Finally getting to work in my own garden late tonight after devoting much of this past season to a community park and much of this weekend recovering from another setback, ugh. The blackberries are no more. Elderberries are up next!

It was 8 years ago that I got sick just 5 days after buying my first truck

Now it’s a few weeks after an upgrade in same . . . does this mean that I will get well and drive off with my beloved into the sunset? Oh how I can dream, right? That we did the right thing too.

One more time things come around again but really are not the same

For we can never go back only forward as each breath moves us on. I guess we want to be who we are now with the romanticized memories of what we once knew: the fullness of our present with the innocence and perhaps mistakes erased from our past? Yeah, just let it go.

Look to our Lord and His return to make things alright my Gentle Friend

He will return in glory, in judgement, in power, and the makings of everything better forever good. The best part: TIME will no longer be our measure but only to dwell . . . lain in the rapture of ultimate love for always.

Sounds wonderful to me. Do you know Him too? Oh I pray that you do and you will be there with me when the stuff of life moves on for good. May this music minister to your soul as we wander towards our heavenly home. JJ

When you search no more

Google and Google Scholar have gotten way too much traffic from me these past 8 years of battling serious illness. It’s time to spend less time there and more time dwelling in the presence of my Lord, Jesus Christ.

And so I shall.

Facebook has been my link to the world outside the comforting yet speechless walls of our home when there were no more folks to call on the phone. A recent relapse in convulsive episodes brings a state of mental fog afterwards. While not a true “post ictal” phase of an epileptic seizure, it is still a time when goal-directed activity (as I used to call it when working in my profession of occupational therapy) simply does not occur. Reading short phrases while lying in a passive state is about the best I can do. Well, except when my beloved is nearby and comforts me dearly. But I follow way too many disease-oriented groups on Facebook so spending time there is not really a break from life, a connection to the living, or even as entertaining as it once was. It’s time to spend less time there and more time dwelling in the presence of my Lord, Jesus Christ.

And so I shall.

Endless planning in my mind or on the calendar on my smart phone has increasingly become a source of frustration rather than relief or even hope. Focusing too much on the future brings tomorrow along too soon, robbing me of the gifts all around me in today. I simply don’t know when-or-if I will be a candidate for parathyroid surgery now that I have a diagnosis that explains so very much of what is wrong with my health. I simply have to wait for others to review my case and call me. Steve and I will adjust our schedules and lives accordingly. It’s time to spend less time there and more time dwelling in the presence of my Lord, Jesus Christ.

And so I shall.

Gardening has become both a hobby and source of identity when my role as an Occupational Therapist went away. I am grateful that a couple of months of better health in the spring allowed me to largely finish a rain garden project in my community as a Master Gardener. My volunteer work continues as the Assistant Editor of the quarterly publication, Canoe News (of the United States Canoe Association), and Editor of the monthly newsletter, Across the Fence (of the Master Gardeners of Purdue Extension, Allen County). Often these are difficult to get done; somehow with the Lord’s grace we do. But I am struggling to keep up with our own landscape that requires daily maintenance and some brute strength that is tough for me to do these days. The degenerative changes in my spine are not going to go away so what will I/we do about all of those flower and fruit and vegetable beds out there? Keep watering for now, pray about it, and realize that it’s probably time to spend less time there and more time dwelling in the presence of my Lord, Jesus Christ.

And so I shall.

Gee, suddenly I feel less stressed about things. Thank you Jesus. You care about these issues in my life and in those of the Gentle Readers out there too, holding every one in the palm of your hand, the love in your heart, with the promise of your return. Things will work out according to Your Divine plan for our lives. In this we can rest tonight.

And so we shall, eh?