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?

When the adventure is inherent in the day

No fancy definition needed

When the adventure is inherent in the day.

Not exactly a mountain top experience

Or reaching the limits of form and space.

Nor costly in the typical sense of words

For no one wants to spend thousands on health.

Nothing like it in the normal world

But for me it’s no, not, nor, nothing then let’s go anyways.

The effort to live with serious illness

Even when the trials are less to write about

Are no smaller challenge, adventure shall we say

Because you really don’t know the outcome when you head out the door.

There may be pictures (scans), adrenaline rushes (injections) oh my,

Better hold on sissies, cause there ain’t no manual when you decide to try.

And try I have, a thousand times over

To some avail with microscopic progress, not perfection by any means.

Today was no exception as my head swum with radioactive tracer

Driving down the road hungrier, less self-assured, ready to make it anyways.

So what’s in your adventure portal?

The one with an open-ended plan

Make room for the derailments of this life

‘Cause nothin’ better than that Gentle Ones. ‘K Lord, let’s go!

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.

31, 23, and 6:13

Never could I have ever imagined that I would spend the better part of the 5th decade of my life battling a serious illness. Then on cue from the Masterful Maestro, Jesus Christ, a few tweaks in 1 type of medication and 2 supplements began to turn things around. What has transpired seems miraculous to me.

31 symptoms aren’t as bad right now as they were when I wrote them down on December 29, 2018. A few more are gone.

23 triggers of sometimes violent, convulsive episodes have diminished in severity as they were when I wrote them down on December 29, 2018. A few more are gone. A few days per week I have none.

And in a matter of a few hours from now, at 6:13 a.m. to be exact, I will be able to board a plane all by myself to head back to Rochester, Minnesota and the Mayo Clinic. An aggressive schedule awaits me for my follow-up treatment and medical visits. I’ll stay in a special condominium that will accommodate any ongoing chemical sensitivities; I’ll even learn to Uber and Lyft. Yay!

I am hopeful that things will turn out alright. I am slowly getting stronger and pain levels are coming down with various therapies that are finally working! Master Gardening activities are ticking up and I have a sewing project that I work on in the hours when I am feeling better. Call it my transition back into life.

What a good feeling. Thank you Lord for seeing me through to this day. Thank you also to my beloved, Steve, who has faithfully walked with me during thousands of dark days and nights. I am so blessed. Restoration is coming at last and I am as humbled as I am grateful.

Lord, please hold my heart and my hand as I make this trip. Let’s go! JJ


And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.

1 Peter 5:10

The Case of a Christian Who was Wronged

An analysis of sin, our fallen world, and Biblical truth is critical to understanding what to do when things go wrong in the life of a born-again believer in Jesus Christ. We are all human and will make mistakes, some with dire consequences in our own life or the lives of others. Such philosophical gymnastics is not my strong suit but heeding the discernment of the Holy Spirit is mine for sure. And the Lord’s leading was clear recently. When faced with a recent dilemma of how to handle a potential case of medical malpractice, I turned to the ears of a Christian friend, God’s Word, writers smarter than me, journaling and prayer. Here’s the life-changing story.

A thyroid condition very likely was mismanaged for twenty-nine years of my adult life.

There were at least five Medical Doctors involved in the management of my thyroid condition over the course of my adult life. The Doctor completing a routine physical for my first job out of college made the diagnosis of hypothyroidism when he palpated nodules on my thyroid. I was a young woman, horrified and scared! I was told (in those days of the Merck Manual and before the internet) that thyroid nodules were relatively common, benign, and needed to be treated with medication. After all, hypothyroidism runs in my family! The drugs that each Doctor gave me changed over the years but the basic treatment plan never did: suppress the thyroid with synthetic hormones and “monitor” the nodules. This process was difficult at times when they switched me to more natural preparations or when a Doc suspected that there was an interaction going on between female hormone and thyroid hormone levels. However, nothing would be as “difficult” as the daily convulsive episodes that very likely were related to this issue decades after the original diagnosis.

Enter here 8 years of a serious illness portrayed by dozens of disabling symptoms, the worst of which was seizures every single day that began late that first year. At times they were so violent that screams erupted from deep within me often followed an inability to breathe and sometimes passing out in bed shortly thereafter. The head-banging and severity of high-velocity, involuntary movements created significant orthopedic injuries, taking me in-and-out of various manual therapies because (of course) I could not tolerate pain medication. My activities of daily living were strained and altered beyond belief; any noxious sensory stimuli, the time of day, and seemingly unrelated triggers set off the episodes often for hours per day. I awakened with them and a headache, body aches every day. I fell asleep with them. I tried to live around them as best I could after hours of recovery. I was up all night after the worst episodes and when trying to avoid them. 5:00 a.m. found me crashing into bed only to serve my 30-60 minutes of penance before passing out into fitful sleep. It was a living hell.

Only by the grace of God did I survive this time in my life. Sometimes I would have to wait for hours before my limbs would work right to drag myself to the bathroom. Other days if these waking seizures occurred when my gracious husband was home, he had to carry me to the bathroom, feed me, or drive me to the emergency room. Our life was hell much of the time and it tested our marriage in every way possible. Steve never knew what state he would find me in when he returned home from work . . .

Significant testing, research, treatments, expense, extreme avoidance strategies, travel to one specialist or another, sleep deprivation, and more characterized those eight years always hoping for some level of recovery. I didn’t only try CBD oil but SIX BRANDS of pharmaceutical-grade CBD oil at two different stages of this illness. One summer I plastered a hallway wall with dozens of sheets of paper including: a daily calendar, symptom and extensive treatment record, functional medicine charts, genetic testing results, and anything else I could think in a search for trends or clues. I was largely bed-bound in 2015 and spent 2016 receiving IV infusions of antibiotics through costly home health nursing care. Treatments would ease my worst symptom for a limited time then stop working with exception of oral Prednisone. The only problem with using steroids is that they are contraindicated in osteoporosis (which came along as part of this journey as well). I had to reserve PRN Prednisone for only the worst episodes each month because my primary Doctor would not order it more frequently.

Three years ago, a Naturopathic Physician came the closest to finding the “root cause” of the serious illness when he tested for and diagnosed an autoimmune thyroid condition. Bio-homeopathic injections (among other treatments) brought most of the labs within normal range but there was no appreciable change in my symptoms. I continued the injections just the same at a considerable out-of-pocket expense. Eventually I learned to give myself the injection, saving me an additional $20 per shot. It was pretty incredible that I was able to administer the subcutaneous medication when needle sticks of any kind generally triggered violent convulsive episodes! Somehow I got it done.

So this year when I finally made it to the Mayo Clinic in Rochester, Minnesota, and after pleading with the neurologists to let me see one of their endocrinologists, a friendly, Indian Doctor NAILED IT. I didn’t have an autoimmune disease. He said I was on too much thyroid medication! I have hyperthyroidism not hypothyroidism. A quick review of the literature found that it is hyperthyroidism that coincides with multi-nodule goiters in addition to half a dozen of the other symptoms that I was experiencing. The treatment is vastly different from anything I had ever been prescribed for 29 years! He immediately cut my medication in half while I waited for the new prescription to arrive in the mail. And within days, over six symptoms began to improve with the most significant being reduced convulsive episodes. It is now 4 weeks later and the trend continues. I have had several days free of seizures and dozens with barely a little zip of a tic!

The change in my life is nothing short of shocking. I discuss the other findings from my work-up at the Mayo Clinic HERE and the beginning of this entire saga HERE. There are videos of the episodes HERE with my hope to share my faith in Christ Who alone has helped Steve and I endure the worst of days. I would have died without Him! This blog came about to help me cope with this serious illness. The Lord carried me to hundreds of appointments over the years, helped me make dinner or my husband’s lunch when my head was pounding, or even walked with me to simply open up the back door to let out our pup out each day with thousands of seizures going on and on.

Then this week I wondered what I should do about the oversight, even incompetency of those five Doctors whom I trusted but gave me the wrong diagnosis and the wrong treatment? Maybe the “best practice” for the management of multi-nodule goiter and hypothyroidism have changed since they went to medical school/over the past few decades or maybe it’s just that they forgot the basic standards of care? Why didn’t they refer me to an endocrinologist for more comprehensive care? A second opinion? I never thought to ask to see a specialist as they all made it seem that ordering and reading the lab results were routine parts of my diagnosis. I researched my condition extensively but never even thought to search out an endocrine diagnosis that they did not give me. Repeat thyroid scans and testing were ordered somewhat irregularly and only tiny changes were ever made to compounded prescriptions because I was so “sensitive.” No one ever questioned the original diagnosis, why my lab values never stabilized and continued to worsen this past year, or why I could not tolerate medication changes. I needed a completely new treatment plan.

Each of my current two Doctors asked about the findings of my consults at Mayo Clinic. Both of them minimized the change in diagnosis! They minimized the need for a drastic reduction in medication, a potential complete change in treatment plan, and the impact of hyperthyroidism on the hellish illness that eluded both of them. Neither apologized nor assumed any responsibility for missing the mark. So as my mind has become clearer, my thoughts have turned to the topic of medical malpractice. After all both of them were negligent. As I considered this I became increasingly angry, hurt, betrayed, hot! A Christian friend suggested that I spend some time in prayer and Bible study, seeking wisdom; it didn’t take long to find 1 Corinthians 6 and multiple Christian writers discouraging the believer from lawsuits against fellow believers. Yes, both Doctors profess to be Christians. But what about their professional accountability? What about what happened to me? How do I ever see them for a medical visit again? Wow, Lord, settle my soul . . .

I’ll share here a part of what I found to be the best advice and perspective for persons who are believers that considering a medical malpractice intervention. It comes from James Druckenbrod in the November 1991 issue of The Linacre Quarterly (a publication of the Catholic Medical Association and the denomination from which I found the most extensive writing on the topic of the Christian response to medical malpractice).


. . . from a Christian ethical perspective, it becomes apparent that something basic is wrong with a society that so easily, and more frequently, can blame its “helping” professions for errors, and receive restitution in unlike kind (money rather than health or life). Either the “helping” medical profession falls short of its professed ethics to heal the sick, or society falls short of its understanding of what healing in modern times is all about. Or as this paper will suggest, both groups fall short of the gospel imperative of charity that becomes the way that the Christian communities display the vision of the Kingdom of God to a modern, pluralistic, and secular society. An underlying thesis is that medical malpractice has resulted from the secularization of the vocation of medicine. In the process of secularization, the basic social unit of the doctor-patient relationship, the spiritual union of God, doctor, and patient has been severely disrupted. The doctor as well as the patient and society have all contributed to this disruption by each taking their own advantage of the changes. A possible solution to medical malpractice for the Christian patients and doctors can be found in a return to gospel imperatives of trust in God, and obedience to God’s commandments.

I could fill many pages with all of the secular and Christian angles on the topic of medical malpractice with regards to what happened to me. And yet somehow through the past 8 years I always knew two things that: 1) someday the Lord would allow me to heal and 2) there was purpose and meaning in even the worst days of my suffering. It would not be wasted! Today I am going to choose to go with the mandate of 1 Corinthians 6 and the concept suggested above of charity; I will decline a medical malpractice lawsuit or taking my issue before “the church” in favor of lying it all at the throne of grace of my Lord, Jesus Christ. He is the Great Physician after all!

I do intend to approach each Doctor again about my care then write each of them a short letter on the matter. These actions will require much prayer and preparation. In the meantime, I still need their care in other areas of my health. But they aren’t touching my thyroid! For now I will reserve endocrinology issues for the Specialist at the Mayo Clinic who is helping to turn my life around. I just don’t trust anyone else with the new diagnosis of hyperthyroidism. Gentle Reader, perhaps you understand and agree? JJ