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

When the mind doth calm

Almost unbelievably, the change of more than Spring has begun

I never thought it could though wish for it I did with all my might.

Because you can only see from where you have been unless given to dream

But alas I don’t do well with fantasy: give me something real I can touch, I can feel!

Years with my mind in the craggy place of sickness but yet wired just the same

Astounded I functioned at all as I look back at my years from there to here.

So the consult among the experts, the one we had to persist to even get

Held the critical link to a change in medication becoming the magic pill, so to speak.

More days, more nights free of seizures than ever before have opened up my world

To the wonders of being, the tasks of life, the longing embraces of my beloved so sweet.

With more road to travel in this journey of recovery, I still do not fear it ending soon.

When the mind doth calm the seeds of true hope and love are born I can see:

My Lord hath brought His goodness and in it I will simply dwell for now, alright.

Psalm, Psalm 107:29, waves, Bible, storm, Jesus, calms the sea, hope, trials

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

Just Breathe

The stress is crushing

Into my chest, my frame in flare

Old issues still wanting to be a friend

Screaming with the new ones, a symphony of suffering.

The stuff of life

Crowds every moment and then

The smart phone dies and hours are sucked up

In this Verizon store, that kiosk, then hours with online tech support.

My checkbook sighs

From neglect then a balancing act

Or nightmare as the expenses of preparation

Smell poorly like the “unscented” shampoo at the dog groomer!

Alas I confess

I have been here before:

A medical trip on the horizon

Brings hope but making it so: invites a nightmare.

For how does one prepare

With a brain on fire and infections too

Each vying for attention in the hours that remain

Before departing to the fabulous Mayo Clinic very soon?

Just breathe little one

The one inside that is afraid

Come to my rest my Jesus calls to my heart

Lay here your worries, your burdens; the time remaining is mine.

How fitting after Valentine’s

When I barely got to see my amazing love

That the Author of love would also come to my rescue

And all I have had to do is let go: let Him add the increase for the rest.

The rest. Hear that!

For the opening of this door

Was ordained for this season in life

The last medical records will arrive today. Go take a nap already JJ.