Bouncing back, bouncing all around

It’s a good thing that the Lord is great and consistent every single moment of every single day, keeping our best good in mind when we are bouncing around a bit in life. Yesterday was a day with two of those hits for me.

I recently described a dilemma I had with a new treatment direction as I trend overall toward recovery from a serious illness. I am grateful for some better days and many more better moments than most of the past 7 1/2 years. I’ve barely grasped the significance of all of the changes let alone managed the new patterns of illness/recovery/illness and so on. The following 2 pictures from my early “birthday celebration” depict this very well I think.

9:00 a.m. after my alarm went off, back to bed then after the tail end of an unexpected/long tic attack episode, and needing to eat before taking PRN medication. I can’t control my left arm and struggle to feed myself, manage dental appliances with assistance.
4:30 p.m. celebrating at the Chit Chat Tour of social media stars Diamond and Silk before dinner along the riverfront.
JW Marriott, Grand Rapids, MI

With the blessing of an incredible local endocrinologist (that I miraculously got to see in record timing) I am free to make my own changes with new medications (this time covered by insurance, yay!). Her intervention has led to both successful and sometimes confusing experimentation. I’ve consulted with a local compounding pharmacist, prayed and landed on a plan that includes returning to mercury detox. Mercury can be sequestered in the tissues of the thyroid. I suspect that Hg is getting stirred up, even dumping as I transition from suppressing the thyroid: Docs prescribed high doses of meds for decades but an Endo at the Mayo Clinic recommends drastically titrating them down. I can’t seem to go fast or slow enough to cope with the outcomes each day. Hg as a mitigating factor seems the only plausible explanation to me right now given that I was doing so well initially then the seizure attack episodes returned. And mercury binders, minerals affecting the thyroid inversely affect the pattern of episodes. Mercury showed up again in recent blood work . . . Gratefully I have the best tools around now for both of these avenues.

I felt really beat up and exhausted as we left the house later today yet rallied for the cause of celebrating my upcoming birthday none the less. The tickets were already purchased for a show that is a long car ride away from home and my beloved Steve would be doing all of the driving as usual. It was a good decision to go. I had a really nice time with Steve. Then I took my Hg binder supps too close to bedtime and have been awake all night. Well crapolaski! (That’s Polish, of course.) This time at least I was able to get some correspondence done as the night broke into day. Crying and weeping really take the life out of you for a time, then joy comes in the mourning.

But social media stars Diamond and Silk are exactly the rescue remedy that I needed today. They are a hoot! Don’t follow this link if you aren’t open to other political viewpoints in our hotbed of political correctness in the United States these days. These sisters are polarizing! Kind of refreshing for me: a gal who has chosen to be transparent with the real ups and downs of overcoming a serious illness. The straight scoop is just alright with me. “Don’t sugar-coat it baby! That’s right!” And so is the Word from Lord, Jesus Christ, that sees me through it all. I hope He will do the same for you Gentle Reader. Have you trusted in Him no matter what? 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

Had to go “country” on this one

Perhaps I killed the Easter bunny of 2020? I just can’t get her out of my mind . . .

Gardening with a dog keeps you more aware of your surroundings than on the tasks at hand. I have to call out for Elle every 10-15 minutes because I just don’t know where her sniffing will take her: to the pond behind us for a swim? Chasing after a young family pushing a stroller in the court? Saying “hello” to the neighbor boys cutting through someone’s yard? Rolling in goose crap? Or today, intently sizing up the nest of bunnies hidden in the vegetable bed!

Fortunately I was nearby when she decided to jump the wire fence and investigate the litter of baby rabbits in our vegetable bed up close. Then all hell broke loose! The 3 bunnies I saw scattered in 3 different directions while she dashed to and fro trying to catch one or all of them. It all happened so fast! “Elle get out of here!” I shouted only to find her jump out then jump back in again as I tried to free one of the furry creatures now strangled by the 1/2″ green chicken wire. I pushed its head backwards wondering if it would bite me? Elle grabbed onto a brother (or was it a sister?) trying to escape through the black metal fencing that enclosed the entire area; I lifted up the chicken wire and the weight of the bunny’s body below my hand broke it loose. By then I caught a glimpse of the 3rd sibling getting caught the same way just out of reach then breaking free and squeezing around the black fence post to escape the area. What mayhem ensued as the one now in Elle’s jaws squealed loudly!

Elle in hot pursuit at another time, for another cause.

I ran over to rescue it but it was too late. Probably only about 13 seconds had transpired at this point and the first one to escape had already been chomped by our German shepherd huntress. Elle often just plays around with the furry critters she finds in our yard, engaging in a terrifying-for-them and delightful-for-her game of catch and release. This time her usually soft grasp of her jaws had sheared the skin off of the back of the tiny rabbit which exposed the upper half of its pink and white spinal column. I was mortified! How grotesque! I really didn’t know what to do. The animal was suffering greatly so I shooed her captor away only to witness the little one struggling to run off into the bushes. “It’s going to run off to die,” I thought to myself and who knows what will happen after that: a turkey vulture will circle around and take her to dinner or more likely, Elle will find her and torture her some more. I knew what I had to do.

The blade of the shovel became a protective shell over her and from the menacing canine while I called out from the backyard, “Steve! Steve! Are you there?” I called for my husband in the house. He wasn’t there. I called for him in the shed. He wasn’t there. I called for him in the garage. He wasn’t there. Geez! He was just here a couple of minutes ago! Steve takes off as quickly as the dog sometimes when on a mission that only men can understand. But does he realize that his damsel is in distress and needs him RIGHT NOW?!

It was all I could do to keep Elle from going insane. I should have put her in the house but another reality came over me that took precedence: my dog, our dog had maimed a baby rabbit and it was suffering while I ran around to get someone else to take care of the matter. You know I grew up in a crowded suburb north of Detroit, Michigan, not in the country, right? You know that I barely shot a b.b. gun at a paper target as a kid and visited apple orchards for my “country” experiences. But somehow I knew that the right thing to do was to put the bunny out of its misery as soon as possible. I HAD TO DO IT. I couldn’t wait for Steve. The longer I waited, the more problems I would have with Elle and my conscience for our pup torturing the softest, cutest, fuzziest of God’s creatures now huddled in fear and taking its last breaths under a cold, steel coffin in our backyard.

I killed the bunny. I killed the baby bunny. I put the baby bunny out of its misery. I did what any country gal would do in a heartbeat without thinking about it and ended the whole ordeal. Then I went to try again to locate Steve. Just as I came around to the front of our house, he rolled up into the cul-de-sac on his land paddleboard just as happy as he could be to be outside taking in our unseasonably warm early spring day. He’d already been out for his first race practice of the year at a local lake with the Kahele outrigger canoe earlier this afternoon and just couldn’t get enough of the 70-degree temp during the first week of April. The day was beautiful. Steve was in his element. Julie was waaaaaaaay out of hers!

Steve helped me with disposing of the lifeless body of what surely would have been the Easter bunny for all of the boys and girls in the neighborhood next year . . . or so it seemed to me. I killed the Easter bunny! Oh dear. We talked through the whole ordeal again and turned our attention to the projects that I was finishing up in our yard. Preparing dinner and cleaning up the kitchen followed while thoughts of the little carcass drifted in and out of my mind. Not a good day to be cleaning the remaining chicken off of the roast I had prepared last night! The pinkness of the inner bones reminded me of that little baby’s spine. Every time I closed my eyes, I could see the raw, bleeding, exposed back of the chomped and squealing precious critter with the soft paws and fluffy tail. Oh dear. Oh my.

So maybe some of you Gentle Readers grew up taking care of dead animals during your years living in the country or on a farm? The closest I got to this was probably throwing out a mouse trap with the mouse still entrapped but already dead, its jaws locked on a piece of pinconning cheese. Always felt bad for the little things. We had gerbils for pets you know, and they all look so harmless — until you find their damage behind the sofa, in the duct work, or in your shoes with just a little hole in them! I guess I grew up a little more today, a little more like a country gal who was simply taking care of a tiny matter in the circle of life.

And now it’s time to go to bed and close my eyes. Oh Lord, help me let go of the cute, squeaky rabbit that died today. Easter is coming soon and celebrating the sacrifice you made on the cross at Calvary for us to live eternally in peace, with you, is all that matters. And thank you for the courage to act when needed to end the suffering of one of your creations. You care about them and you care about me too. You have acted miraculously in my life in recent days in a way that is further reducing my own suffering and I am exceedingly grateful. More on that another time. For tonight, I get it Lord.

“Are not five sparrows sold for two copper coins? And not one of them is forgotten before God. But the very hairs of your head are all numbered. Do not fear therefore; you are of more value than many sparrows.” Luke 12:6-7

You are so good. JJ

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

Navigating the Mayo Clinic

Just like consulting a new bride is not the best person to go to for wedding planning advice, a new patient is probably not the best person to advise on how to navigate the Mayo Clinic. But I’magonnadoit anyways!

Expansive receiving area inside the Mayo Clinic and Gondo Building

Two weeks ago I was exceedingly stressed with the immense planning required for me to make an extended medical trip let alone to the enigma of the Mayo Clinic! It was all I could do while battling a serious illness to collate a pile of medical records into a tabulated notebook, make hotel reservations at a place that could accommodate chemical sensitivities AND a dog, make Clinic appointments, complete the pre-registration and questionnaire requirements of the Mayo Clinic App, clarify insurance issues, grocery shop for my special diet, oh and pack my stuff! Each person will have unique preparation tasks to consider when making the decision to go ahead and make your way to the Mayo Clinic. Here is my brain dump from our first trip in February of 2019.

Before You Go

Plan on hand-carrying any related medical records with you to each new consultation/appointment. (We overheard patients complaining that their faxed records were never received by the right place at the right time.) Condense and organize your paperwork so you can retrieve pertinent test results, CT/MRI/xray scan disks, insurance cards, etc. quickly.

While there are numerous transportation options and (limited) shopping in the underground subway, bring your favorite snacks and drinks with you from home.

Bring extra medications, treatment supplies, (dog food?) and personal products in case your stay is extended, which happens quite often.

If you are driving, consider staying in an Airbnb house/apartment or hotel with a kitchenette. Bring the first few days of groceries with you, even if healthy convenience foods, and especially if you have any dietary restrictions. Appointments can be exhausting and you will want nourishing foods to sustain you until you can get to a grocery store. Most hotels offer breakfasts but do they meet your needs? Contact the Travel and Concierge Desk at MC who can email you lists of hotels with their amenities.

Rest assured that practically everything in Rochester, Minnesota is geared towards the patients and staff of Mayo Clinic. Hotels have shuttles and shuttles-and-buses run in every configuration possible from airports to local attractions. Check with the Travel and Concierge Desk at MC for details.

Pick up a map in your hotel lobby that covers the MC and surrounding area to get familiar with things before your first day. Take a drive by the St. Mary’s and Mayo Clinic/Gondo campuses. Both campuses are huge yet there are central access doors for each to simplify things. There IS NO information desk inside the front doors of MC/Gonda building but there are 2 valet desks just inside the front doors that are very helpful.

If you are a Facebook user, reach out to others with the same medical condition who have gone to MC for tips and collaboration. Just learning from another patient that all of the buildings and hotels around the main campus are connected by an underground “subway,” eased our concerns about travelling to MN in the dead of winter.

Go in the Winter if you can. It’s less crowded and, if there is really bad weather, you may have access to more last-minute consultations due to cancellations. This helps condense your schedule to make the most of your visit. Having said this, the MC shuttles may be late in a blizzard but never stop running and the Clinic doesn’t close! And no, hotel rates are not cheaper in the winter but they can be during weekdays.

First Day

Purchase a multi-day parking pass if you plan on accessing the patient parking garage for more than 2 days.

Bring nutritious snacks and water with you. You will use them!

Wear comfortable shoes and layers of clothing to navigate the long hallways with ease.

Note that wheelchairs and transporters are available from the curb when you arrive. Just alert the shuttle bus driver or valet staff as to your needs and make arrangements ahead of time when possible.

Arrive early to every scheduled appointment. Complete Check-ins via the MC App or Online Patient Portal to save time. Alternate: Check-in kiosks at the entrance to every wing of the MC and Gonda buildings.

Note the computer desks available in the expansive waiting areas, MC WiFi that we found helpful in upper floors and internal offices, and the special check-in kiosk at the entrance to the huuuuuuge lab. Or you can wait in line at the lab.

Very likely you will receive a personalized schedule after your Initial Consultation which details everything you need to know. You can go to the front desk of any department as a “Checker” to see if they have any openings that would allow you to move or change an appointment to streamline your scheduling. Repeat this Checker periodically as things change quickly and you may or may not be notified when an opening occurs.

Gather business cards of your healthcare providers after each appointment as phone numbers and provider names are NOT ALWAYS listed on your patient schedule!

Check periodically via either the Patient Online Portal or MC App for test results, and messages from your healthcare providers. Test results and reports are processed very quickly in comparison to our local healthcare services.

Visit the subway on the lower level even if you don’t plan on stopping at the cafeteria. It’s an amazing place buzzing with activity! The glass atrium in the cafeteria is beautiful too.

Ongoing Tips

Utilize the Airbnb host or hotel desk clerks as a resource for just about everything. Meet the other folks on your shuttle who will usually and gladly share their experiences, recommendations with you. Most folks you meet will be from out of town!

Message your healthcare providers via the MC App with non-medical questions or anything that can help maximize your stay at the MC. They usually reply within a day or two.

Plan follow-up appointments as soon as the need is identified. Staff do their best to work you into the schedule of your healthcare provider when they know that 1) you are travelling to the MC from out of town and 2) when you are scheduled to leave town.

That’s it for now, end of brain dump! Take care, Gentle Reader, and fellow sojourner to the Mayo Clinic! Please contact me with your tips and suggestions and I will add them as needed.