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

God gave me you

Nor ordinary Christmas we had this day

Sleeping in then slowly moving into life out of necessity more than design.

Broccoli for my breakfast and handfuls of granola for my man

Brought us to our traditional reading of Isaiah before revealing our worldly gifts for I and you.

Who paddles a new long board down the hallway

But two middle-aged lovers holding onto our respective gusto of life?

A rest time had to follow for me again

Not as unusual as the waking episodes that have returned changing my hopes for the day.

Perhaps we would visit or do something fun

Yet return to my bed of sickness I did go for a most unfortunate interlude.

When your husband holds you from joy to sorrow

The same day seems surreal: later he feeds you medicine whilst you seize.

Siiiiiigh. Not that old tune returneth even today

For chronic illness ne’er takes a holiday when you want it to my dear.

This did not matter to you: your love never fades

And my greatest gift revealed its beauty the ten thousandth time: it’s you!

I could never conceive of this way that you have

To give beyond your self with a gentle spirit, still manly all the same.

You spoke only of my rest to your family on the phone

Preserving my dignity when I could barely feed myself with fingers weary from the beating moments before.

Yours is a love from the Father, the Son all in One

The kind that sustains you through trials when Jesus comes near with skin on.

He made you for me oh I am the blessed one

I pray he loves you back tenfold for the task of loving me well done today my love.

The Chips Under the Bed

They should be alright after about a week in the heat, right?  Ugh.

Usually when “the bus driver” and I come home from a camping trip, we empty the travel trailer of all food that very night.  Of course it may be 3 in the morning but it all comes out nonetheless.  Not this time.  This time was very different.  The unopened bags of chips are still in the storage compartment underneath the bed and we have been home for SIX DAYS!  Gratefully the ants on the driveway have not found them yet!

I really don’t know where to begin to tell the story of our attempt to bring a family member here from out of State to visit, to maybe live with us.  This was a huge undertaking for all three of us:  a journey that began over 6 months ago that was actually cancelled the first time around.  Perhaps it will be best to unpack the situation in a few blog posts over time as I begin to recover from what was largely a failure.  But there is good news:  my Aunt is healthier, stronger, more mentally sharp, conversant, happier, and overall functioning significantly better than when my hubby, Steve, and I picked her up in Florida 8 days ago.  As for me, not so much.

Last night was one of the most horrific scenes of recent memory.  After a total of 12 hours finally getting some errands done with a late night Doctor appointment too, I had the most frightening convulsive episode imaginable.  My threshold of reactivity had been plummeting with each passing day that my Aunt was travelling or living with us.  We had taken extreme mold avoidance procedures and she was wearing all new clothing that I had specially prepared for her.  Her belongings from Florida were cleaned and secured in plastic storage bins in our garage; only doubly-freezer-bagged supplements and medication were in the house in a remote closet.  She lived in an inadequately  maintained and moldy living environment laden with the fragrances that most women like.  We took extreme measures with her stuff but never considered the detoxing of her body to be the toxin most noxious to me; her skin scent reflected several different problems beyond hygiene and no amount of bathing or washing of linens/clothing was helping me fast enough.  I crashed fast.  She, on the other hand, (in our very clean and climate-controlled home with exceedingly healthy meals, rest, and loved ones nearby) quickly regained skills and energies she had lost in the past year.

I was unpacking groceries from our local Meier when an odd feeling hit me.  The warning signs that I learned to recognize in the past when at my sickest with this complex/biotoxin illness had changed.  The odd symptoms ramped up so quickly into involuntary full-body shaking episodes that I barely had a time to get to a safe position to prevent injury.  These kinds of episodes are very dangerous!  So I was standing in front of a counter filled with plastic bags of groceries when my eyes drew in to close and all I could do was kind of lean-and-cling to the edge of the refrigerator as the convulsions began.  They went on and on for at least 20 minutes until my husband would discover me and carry me to the bedroom.  The repetitive oscillations injured my spine from one end to the other.  I could not move my body and was terrified of falling.  Trying to relieve the cramp in my right calf triggered a rebound, a worsening of the episode.  I just held on . . .

Things were no better once lying down.  The involuntary shaking traumatized my neck and my body temperature began to drop.  I could not speak when I needed to and breathing was difficult.  Time either stood still or passed along quickly, I have no idea which one.  I couldn’t even cry out my angst until much later.  Then the visual anomalies began of swirling shadowy circles on the ceiling of our bedroom.  Steve left and returned a couple of times as he tried to help figure out just what caused this and more importantly, what to do to make it stop.  He sniffed my clothing and found them to be musty.  That discovery pointed to my hours trying to get special requests for everyone at the grocery store — a water-damaged building that was problematic for me before their remodeling.  I guess it is still a problem!  My Beloved removed my soiled clothing and the amplitude of the shakes lessened.  But by then the weird, demonic-like writhing and vocalizations had already begun.  It is terrifying to endure this hell.  I prayed for the Lord to take me.  I searched for the white lights but did not find any.  Three hours went by before I could function again . . . what was left of me, that is.

Repeated biotoxin exposures had lowered my threshold of reactivity.  I was at the lowest point, last night, after doing significantly better these past 5 months.  Looking back it all makes sense:  cumulative exposures began when helping my Aunt for five hours on each of two days to do laundry and then pack for this trip in her moldy State of Florida.  It rains there every day now and she has had water damage in her condo several times without remediation.  I wore a charcoal mask during our time there but the conditions were still unbearable.  (Even Steve agreed and had some symptoms.)  Have you ever had to wear a mask in 90 degree heat and humidity while doing physical and emotionally exhausting work?  I had a stress rash on my chest, at least 12 irritated mosquito bites, soreness from dental adjustments from my Craniomandibular Specialist in town, and to deal with a cognitively impaired and severely anxious family member who still struggles in facing her brain disease.  The process was exceedingly painful, frustrating, exhausting.

In another post I will outline the procedures that we used to attempt to implement extreme mold avoidance to be able to care for a family member in crisis.  We simply could not leave her in Florida any longer.  For today, I am grateful that I did survive last night because I got to see a miracle in action.  No, it’s not only the organic lime corn chips that are alright tonight.  I am completely exhausted yet stable and have not had any episodes since she left our home around 10:00 p.m. (and I cleaned, tossed bed linens and other things out of course).  This is the first time I have been stable in 4 nights.  The miracle is that when I was able to get out of bed at 5:00 p.m., my Aunt’s friend from Michigan had arrived and was sitting with her on our patio outside.  Well hello Dean!  He was offering to drive her back home to Florida.  While I disagree with many aspects of this arrangement, I was in no position to decline a solution that could help stabilize me:  her now former caregiver in crisis.  She left with him after some dinner, some packing, some very sad goodbyes.  Our visit wasn’t supposed to end this way!

Aunt Lori with Dean at Dinner 7.12.18

Looks like the chips and me are going to be fine in a little while (as the bags are still out there in the Camplite in the driveway).  Steve is grateful for the possibility of a full night of sleep.  We shall recover.  I am grieved that things didn’t work out with my family member and for the torture I had to endure trying to care for her.  I am glad that we could give her the gift of renewed health; that I discovered where I am at with this ongoing illness; and that our Lord is there to carry us, to act, to make His presence known no matter how hot things get in our lives.  Please join me in praying for my Aunt.  Dean won’t be staying with her very long and . . . I had to let her go from our care.

JJ

I gotta change my teeth!

Alright.  It’s a few decades too soon in my life to be fussing over fake teeth in a restaurant but that is exactly where I have landed.  Or an acrylic mouthpiece of sorts, that is.  Then there’s the one with metal wires in it.  Aaaargh!  This is all kinda gross, especially with bits o’ lunch in thar!

It’s not your average bear that carries around a bottle of mouthwash in a gallon Ziploc freezer bag with 2 paper towels, a funny little brush and a clam-shell plastic box with air holes in it with a spare mouthpiece in tow.  Gentle Reader, you knew I was not undergoing a normal treatment plan when I signed up for this next phase in my recovery from a serious illness.  After all, who said that specialized dental appliances would stop almost 7 years of daily seizure attacks?

The answer:  no one really.  Persons with Tourettes Syndrome, dystonia, and tics have found relief in addition to persons with severe TMJ or Temporal Mandibular Disorders.  Only one expert mentioned “atypical seizures” and another “movement disorders.”  It was the Lord who led me to  examine my own pattern of symptoms and triggers, led by an observation from an ENT in a recent exam, and extensive research that seemed to indicate that I, too, might benefit from this highly skilled approach within the dentistry profession.  It made sense to me that a Craniomandibular Disorder Specialist would be able to relief pressure on my aching jaw.  If it relieved pressure on cranial nerves in the surrounding tissues as well, then there would be a good chance that many of the episode triggers and the convulsive episodes themselves could go down.  So I interviewed thirteen professionals in the USA  then said, “sign me up!”  My beloved agreed.  Graciously, many wonderful folks helped make it happen.

And I am glad that it did happen.  The convulsive episodes are now EIGHTY PERCENT IMPROVED!!!  Yeah God!  Praise the Lord!  Holy cow!  Cool beans!  Plus every other exclamation of joy I have ever used on this here blog.  Just Julie is going to get well!  I can now lie down and get up from bed most of the time without 30 or more minutes of convulsive episodes.  THIS IS HUGE!  Bonus:  my reactivity to noxious sensory stimuli is also down.  My posture is better.  I am able to eat a few more foods that I have been able to in many, many years without triggering a seizure.  Other symptoms have come and gone yet even the nagging jaw pain is also reduced.  I am looking forward to seeing what will happen over time as the improvements continue . . .

The battle is not yet won, however, as my devices will need adjustments and I’ll possibly need new dental appliances as time goes forward.  This will require significant travel to my Doctor out of State, a leap of faith in the Lord’s provision, and a massive testing of my health status to travel by myself.  Am I up to the challenge?  Absolutely.  We will plan carefully and proceed with caution.  Looks like I am on a good path for recovery at last.  I am humbled and grateful beyond what I can put into words.  Thank you Jesus!

Here are a few pictures from the process from my first week on this new journey.  I look a mess in most of them yet that is because I was very sick going into these appointments.  I had six violent convulsive episodes just trying to do the 5 hours of evaluation and was quite depleted by the time it was over.  Afterwards, my hubby and I were so trashed that we stood in the parking lot late that sunny afternoon and ate every snack and drop of water we had with us!  It took days for me to recover yet somehow I knew that my life was about to change very soon.  Three days later I had another very long appointment to receive my mouth splints.  The changes began within a day and continue three weeks later!  Stay tuned for more good news as this story develops.

Gentle Reader, if you are struggling with serious health issues, I encourage you that the Lord sees your suffering, grieves for you, and promises to be there for you for each and every breath, now and forever.  Call upon His name.  There is “hope beyond” what we can see.  Consider trusting the person of Jesus Christ Who will see you through, carry you this day and always.  I would have never made it this far without Him.  I hope we can share in my joy together someday Gentle Reader.  Our God is good!  JJ

xray, dental, appliances, TMJ, TMD, specialized, dystonia, seizures, atypical, tics, Tourettes, Dr. Ralph Garcia, craniomandibular, disorder, treatment
Assistant Josh took about a dozen x-rays to start the evaluation process.

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Dr. Ralph Garcia takes a detailed history; the smell of acrylics from the lab requires wearing a mask.

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EMG testing of the face and jaw

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Bite evaluation by Dr. Ralph Garcia

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Assistant Julie takes photos with and without the new dental appliances.

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Multiple impressions are taken with soft polymers that triggered episodes when the material was cold. Trying to stay calm to get the proper fitting was challenging.

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Waiting room in Dr. Ralph Garcia’s office! We definitely are not in Indiana!

Sunset Beach, Florida, Tampa Bay, wife, husband, couple, married, sunset, sunrise
A little shy first time out in public wearing the smaller of the two dental appliances so I could have a snack while watching the sun go down on Sunset Beach. So grateful that my Dentist’s office was in sunny Tampa, Florida!

Goodness & Light

 

goodness and light, Christian, Christmas, song, Jesus, hope, humility
Photo from:  https://www.yourhomebasedmom.com/2013-word-of-the-year/

The house on a hill

The one with some land

Just can’t be true

In life without an ampersand.

It’s more like the fermata

In a musical score

Or the final bar line

Where dreams are no more.

You must look around

To the good in your midst

And find the blessings right there

Embrace them with a kiss.

First it’s my beloved

My treasure beyond compare

Next it’s my safe dwelling

The gardens, the love all in there.

Deeper still is my eternal love

The One Who carries me through

The hell of this Earth

Nothing compares to You.

Your light fills my life

No matter how it feels

With hope beyond compare

A shining city on a hill.

What more could I want

When in forever all will be well

Sing alms to my Lord now

This is a story for now, all to tell.

Goodness and light

Lightness and the good

Oh come Lord, Jesus soon

I need you to soften my brood.

Push my focus out to His love

And all comes back and it is right

His Word shines through darkness

As in the day I shall walk in the night.