The Aftermath

When another healthcare faux pas takes the life out of my weary stride

It’s easy to give up or rather give in to a despair that never leaves.

Then a new day comes and I have a decision to make

Even if that day begins much later than planned.

I AM sad. No doubt legitimately so

From the treatment I received,

Or rather did not.

Siiiiiiiiiiiigh.

It’s hard.

I’m only human and in my own strength I cannot do this over and over again.

Thank the Lord that you are with me on my bed of sickness every time

Weeping over the trials, the suffering of your child

Promising that one day all will be perfectly well.

I just gotta hang on, hang tough, and trust

‘Cause the journey won’t be wasted

The rewards will be the best ever

When I see my Jesus’ face

My wings flying free.

For all eternity.

Yes indeed!

Is it enough to have overcome the dearth of trials that pain us so in this life?

That’s a question only answered with faith that comes from our Lord.

Our own strength will never be enough. The days are just too evil

Acceleratingly so Gentle Reader. Do you see it too?

Waste no more time wondering just BELIEVE

Get into your Bible right now, go, run!

Our just God’s Word will ring true

On redemption, wondrous glory

As we take rest in His grace.

Today. Join me there.

It is enough and so

Very good too.

After all.

Another Healthcare Faux Pas

When I learned that there might be some pain relief for me if I went to a clinic that specifically focused on headaches, I was encouraged. I have some form of headache or migraine virtually every day. Pain lowers seizure threshold. Neurologists in this specialty have more strategies than typical anti-inflammatory and narcotic pain medications, over-the counter preparations, and the therapies we chronic folks go in and out of all the time, i.e. chiropractic care and physical therapy. I can rarely tolerate pain medication anymore and have used it sparingly my 30 years of chronic pain. Looked to me like there was something more to learn, some hope for a better quality of life, so I asked my Doctor for a referral to a headache clinic. What would I have to lose?

My dignity. Last Monday my dignity took a major hit at another major medical center. Here’s the raw footage from a message that I sent to a friend when I was still in shock.

Had a very odd, traumatic, and disappointing day at the headache clinic at the CC today. Gotta get this out. The MD Fellow with a couple months of experience listened to me, made a new HA diagnosis along with med ideas to try to manage them. This could raise the threshold for the convulsions, providing relief for both the episodes and HA pain. I have a HA every day and both HA and convulsions have been worse. Tweaked my diet recently and at least the HA came down enough to make the trip: 4 hours each way. The building was old and musty. It rained during half of each travel period. I had 2 hours of sleep Sunday night. I was ripe for an episode at some point; short tic attacks in the truck on the way out. Still was hopeful. The telehealth appts with the first 2 CC specialists 2 weeks paved the way for this appointment.

Then the young MD left to review my case with the staff MD; they both returned. We went in person so I could have a more comprehensive neuro exam. All the 2nd neurologist had me do was demo 5 simple range of motion exercises. A disastrous seizure attack ramped up within a minute! Thankfully I could blurt out to get Steve as she tried to coach me on breathing ex in a childlike way. I blurted out that I can’t breathe! She continued. I asked to lie down. The high velocity, repetitive, involuntary movements were injuring my neck n back. It’s terrifying and dangerous. SHE SAID NO! I could not believe my ears. Steve picked me up, my legs hanging, arms curled up, and put me on the exam table. I was able to get into my recovery position that protects my neck. Screams emerged that I cannot control. The pain seared my spine, head, extremities. Then they left. 4 times in this visit I asked to have the door closed (for privacy). 3x they said no so they could hear me if “anything happened.” Like what, I thought to myself. It was already happening. Steve stood nearby for my safety. I heard people walking by in the hallway. This is a HIPPA violation. (Correction: This actually violates their Patient Bill of Rights, posted on the CC website.)

Steve and I found ways to develop a plan. There were 3 violent episodes in total over an hour. The Med Asst came in once (as id’d by her voice, my eyes were pulled closed) and nurses after the 3rd round. I asked for the Doc. My tongue was thick and protruding out of my mouth, pulled to the right. My right arm dangled lifeless towards the floor; left arm curled and tucked in a flexion posture to my chest. This is mixed hemiparesis. But the young Doc had already left the building. The nurse said if it didn’t stop I was to go to the ER. How would I get there like that, I wondered, struggling to communicate and trying not to chew my tongue or trigger a rebound reaction. Finally I could ask Steve to turn out the lights. He put Prednisone in my mouth despite the snot and tears staining and stinging my face. I was able to ask for ice. Putting ice on the back of my neck broke the pain cycle worsening the episode. Like and overfilled balloon losing air, my body started to calm down. It took about 10 minutes.

The nice nurse had gotten a wheelchair. She figured I would be too tired to walk. I blurted out a thank you. I think she had left when I could tell Steve that I was WALKING OUT OF THERE under my own power. Any shred of dignity required it. I grieved so much on and off through this horror and trauma before I could finally sit up and stay up. Time to use the bathroom, wash my face, and get out of there. Soon I was gingerly walking out of there with all parts moving, albeit weakly. There was no one in the hallway. There was no one at their desk. We walked out into the dusk and rain.

Somehow during the first episode I was able to ask the young Doc to write down her recommendations for me. I’m glad I did. She hand wrote on my summary note only wrote 1 of 5 ideas she had for me. I was able to reconstruct the rest of it on our way home. The older Doc must have been the one to write a different, generic diagnosis. Only 1 recommendation was given and it was for a treatment program at CC that I already did at the Mayo Clinic. It made no lasting impact. Steve and I concurred that the older neurologist was of no benefit. He has seen this discounting behavior before. He said it’s why he jumped in to help me while the Doc did some chanting thing.

I’ll message the young Doc tomorrow via the MyChart online portal for her rec again. Hope she can do so for me. I went there for help with HA pain. I have no meds I can tolerate for pain when things get bad. The modalities help some. But with my chiro out with COVID, reg Doc/chiro rescheduling 60% of my appts due to his busy practice, difficulty getting to PT, and increased episodes, I need more tools to lower the pain threshold. The headache-specific tools could be a game-changer. Then I can go back to natural stuff. And be out of bed, able to function more again. Funny how I’m at the book of Job again as I continue to read through the Bible.

I spent the next 2 days largely bed-bound, struggling to function at all. The young Doc returned my message with the same diagnosis and recommendations as the older Doc but did add the name of the 2 classes of medications she had recommended. At least there was something new to pursue with my Family Doctor. I started an herbal remedy for headaches anyways and at day 5, the daily headache had already started to improve. But I still wanted to see their report. Turns out I was in for another shock when it became available 6 days later.

The Progress Note that got posted in my patient portal and I anticipate will be sent to my Family Doctor is a FABLE! The report lists so much false or inaccurate information that I wonder who they are talking about? Numerous tests were never completed but there are results listed for them! Below is my responses from the “Request for Amendment of protested Health Information” filed today in my patient portal on the CC website.

The Progress Note contains falsified information.  The following tests WERE NOT completed:

REVIEW OF SYSTEMS:  None of these questions were asked.  7 mm kidney stone, intractable back pain, arthritis, significant sleep disturbance with Mild Sleep Apnea denied or omitted.

PHYSICAL EXAM for rash (present on both legs), cardiovascular & lungs (no stethoscope exam), vascular (no checks).

CRANIAL NERVES:  No exam completed.  No sensory testing, venous checks.  My tongue protruded to right during the convulsive episode (in your office).

MOTOR EXAM:  No MMT completed of UE or LE.  Right UE hung from table during convulsive episode.

SENSATION:  No one touched me except for vitals.

CEREBELLAR:  Convulsed for total of 60 minutes.  No finger to nose, heel to shin, rapid alt movements completed.

REFLEXES:  All values are false.  No testing completed.  Neither Doctor saw me walk in the room nor had me do toe or tandem walk.

What does the current information say that you believe is inaccurate?

The only PHYSICAL EXAM that was completed was an upper extremity range of motion which was WNL, interview, and vitals.

Multiple false values need to be deleted.  We drove 4 hours each way to have a comprehensive neurological exam completed and all that was done was an interview, observation, and BUE AROM test.  No one touched me to do a physical exam of my heart, lungs, reflexes, cranial nerves, strength or other tests.  Neither Doctor completed the gait tests noted nor saw me ambulate in the room.  Neither Doctor reviewed my Headache Scores with me.  When the BUE AROM test triggered aura then speech changes, searing head/neck pain, tics then a convulsive episode, I struggled to ask to lie down.  Dr. K (the older Doctor who I finally got to see her name when it was stated on the PR) said “NO.” Whiplash re-injury followed from severe involuntary movements.  My husband picked me up and put me on the exam table in a position so I could brace my head from further injury.  Dr. K chanted to breathe deeply.  Sometime later my husband put 60 mg of Prednisone in my mouth.  I do not know when the Doctors left.  Later a nurse checked on me and brought ice for the back of my head/neck and the episode stopped completely within a minute thereafter.

We could have done this verbal exam by tele-health without the trauma of this visit, extensive travel, and false report.  My “After Visit Summary” includes the diagnosis of Chronic Nonintractable Headache, Unspecified Headache Type.  This diagnosis is not on the Progress Report that I anticipate is going to my family practice physician, Dr. J, for continuation of care.  Please add it as an addendum.

Sigh. Big sigh. I have no idea from where they got the physical exam results that are listed in the Progress Report. They are fabricated, false, wrong. The Request for Amendment of Protected Health Information can take 60 days to receive a reply. I looked up the Clinic’s HIPPA policy and Patient Bill of Rights and Responsibilities. Looks like my privacy concerns fit more the latter and that I would have to contact an outside agency to file a complaint. It’s too soon to consider such action. I’ll see what the Request yields. Not sure if I should contact the young Doctor or not. She was actually very professional and listened to me. At the Mayo Clinic, the “MD Fellow” residents are able to file their own report in addition to the supervising physician. At CC, only a report with Dr. K’s signature on it is filed beyond the Visit Summary you get walking out the door (that only contains a preliminary diagnosis, single statement of recommendation, and information I had provided to the patient portal). The gross inaccuracies on the Progress Report from CC renders it useless in my humble opinion.

We’ll see what my Family Doctor says. He is a brilliant diagnostician and loves to review special reports. He’s just too busy most of the time to dig into the differential diagnoses of my case sometimes. Looks like the Docs at CC were also so they made it up. Another healthcare faux pas for sure. Oy vey. JJ

The trials of discontent

Perhaps the greatest challenge a follower of Jesus Christ must face in his or her walk with the Lord is how to handle the evil that is in our world. When it touches our own lives in the form of discontent, when things are not as we think they should be and we are unable to accept it, then we may be tempted to break fellowship with the Lord our God. He has ordained the length of our days, the vessel in which we live, and every detail of our lives whether good or bad. Recently it occurred to me that not accepting His will for my life is a sin that keeps me from any form of peace. And now I know from wence it came.

A particularly horrific convulsive episode about a week ago left me whimpering on our bed. The searing pain in my neck and broken frame notwithstanding, I wondered for the several thousandth time, “how can I endure this level of suffering Lord?” My Jesus had shown me many incredible things through the trials of battling serious illness; my Jesus was always right there with me when I called upon His throne of grace. But like the old song goes, “Is this all there is?” Is this all there is to my life when entire beautiful days upon days are spent suffering in bed?

The truth that we see is not all that there is to know or behold in this life. Only by faith in the Lord Jesus Christ do we come to understand what the fullness of life means. We will have both joy and sorrow. We confess our failings, surrender our will to the Lord, and receive the Holy Spirit, beginning our eternity right here in the midst of all the good and bad; He helps us endure all things for His glory. But I didn’t know all of this when I was 3 years old. All I knew is that a neighbor boy named Danny was babysitting us and molested me while I was taking a nap in my big girl bed. I knew where the pills were that my mother took. So at some point thereafter I crawled up onto the kitchen counter, opened the cabinet door, reached way up onto the top shelf, grabbed that bottle of pills and ate a bunch of them. The only other memory I have of the incident was feeling scared while lying on a gurney in a hospital. I must have been crying too because the images are unclear. I had to go to the bathroom. I asked if I could get up and go to the bathroom and a man said NO. I felt the warmth of the urine on my legs and underneath me as someone said something about pumping out my stomach. And then I was OUT.

In a single flash of a moment after that convulsive episode, I knew what the Lord was trying to tell me. Or at least I think I do! He was showing me that by taking those pills, even as a small child who knew she had been hurt badly by someone everyone trusted, I was trying to take away the pain and the life that God had allowed for me. My little mind could not bear what had happened to me. The reality that the ugliness of that scene was ordained by the same God who created me and crafted all of my days from beginning to this end was too much to understand. I would not have been old enough to say the words to my Mom or Dad describing what that boy had done to me nor felt safe doing so. My parents weren’t exactly touchy-feely type folks. Can a 3-year old feel shame? Dirty? Worthless? Overwhelmed? Traumatized? Terrorized? Surely! While I have known, grieved, and forgiven the players in this scene for a long time now, I didn’t know that my survival from that day forward in my own strength would be marred by discontent. Nothing in my life would be good enough, or so I thought, to make me truly happy or at peace EVER. The seeds of several of my character flaws were planted that afternoon. I know that it wasn’t my fault any of this happened. I was just a little kid. To survive abuse is actually a noble task and accomplishment. What IS my responsibility, however, is to figure out what to do with what happened to me, layer-by-layer as each level of understanding is revealed in my walk with the Lord over my lifetime. In due time we must all ask ourselves: Will I grow up damaged or will I heal and thrive? Fifty-seven years later, the wound from this particular scene finally healed completely.

I grew up in what you would call a “blue collar” family. My Grandfathers worked in their respective trades: my Dad’s father as an auto mechanic and my Mom’s father as a maintenance man/operator in the boiler room of an ice cream factory. My Dad got a job at the General Motors Tech Center as a non-degreed draftsman. Each of them were very skilled at their respective vocations. My Dad in particular, would end up redesigning slot car motors to make them among the fastest in the world and co-authored over 30 clutch-assembly patents with Borg Warner later in his life. Although each of them would earn a living wage to support his family such that their wives could stay home and raise the children, there was always an attitude that it was not enough. I have come to call this mindset a “scarcity” mentality. The adults in my family never seemed satisfied with the income or the lifestyle or the relationships to which they acquired. First it was my Mother’s Mom taking the last of her grocery money to purchase tickets in the Irish sweepstakes. If only she would win then she would be happy! I think she did win a time or two. I don’t think it ever changed much of anything though.

The harder part of this dynamic for me came from my parents, especially my Mom. “If only we could win the lottery” she would say, “then . . . .” fill in the blank with some material gain of some sort that she thought would solve our problems and bring happiness. Without realizing it, I adopted this mantra as well. It sure helped when my parents got divorced or when my Dad missed a visitation or when my Mom wouldn’t come home at night from her carousing adventures with Parents Without Partners. If we had a windfall of cash then it would solve all of our problems, right? This was back in the days before there was common knowledge that most people’s lives are not better when they win the lottery! Family relationships tank when relatives come calling for money and out-of-control personal spending often leaves the prize winner in debt not set for life! Sadly this mindset and experiences of abuse and trauma contributed to addictive behavior in my teenage and young adult years. What became my addiction of choice that I thought was my winning ticket out of my inner turmoil? Work-a-holism. I nearly drove myself into permanent injury working so hard at school, the early days of my career in healthcare, graduate school, and one relationship after another. By the grace of God, He showed me a better way when I learned about addictions when doing contract work at a large mental health hospital. My years continuing to seek answers ultimately led to a personal relationship with Jesus Christ. A new level of healing and a less frenzied pace of life began in my thirties.

That wasn’t the end of my discontent, however. Somehow I still looked more outside of myself than to the Cross for meaning, healing, self-worth, hope. A handwriting analysis in my youth said I was a very determined person. Well, yes, and that was not necessarily a good thingy! I sought counseling and studied God’s Word which did help me in many good ways. Yet like breaking in a wild colt, it still took repeated heavy tragedies from 2003 to 2007 to soften me for the biggest gift and the biggest trial that were yet to come. I am meeting you here after both of them: 1) marrying my Intended Beloved Steve and 2) enduring a serious illness that brought thousands of seizures virtually every day over 9 the past years. I have been grateful for the former.

Steve is an amazing man of God who loves me dearly as I do him. The serious illness not-so-much. I had never accepted the Convulsive Disorder or Dysautonomia or Dystonia or Functional Movement Disorder or Non-epileptic seizures or whatever you want to call it. What I came to realize this past week is that not accepting this illness is not a form of defeat. Rather, it’s not accepting that this is the Lord’s will for my life for my best good. It is the journey for me that will bring Him glory. And how am I handling it? I am denying His will for my life when I reject the pain and suffering that goes with the numerous blessings. Instead, I must trust that like all of the trials that have happened in my past, this illness serves a greater purpose. I may or may not ever really know what that purpose is. The episodes and medical complications may never stop. If I am to succeed at letting go of my discontentment with a traumatic event in my life at age 3 years old, I must also let go of the other thing that I hate in my life. Believing otherwise is believing a lie: a lie from the author of human suffering, sin, and death himself, Satan. No magical thinking (like a lottery mentality) is going to cover or remedy this lie. I MUST DENOUNCE my discontent, leaving it for my Lord to redeem.

How about if I repeat that another way:

No happiness or peace will come if I hold onto discontent over the Lord’s will in my life.

I knew in an instant, why that memory of me as a toddler came to me while grieving after another seizure. Both sorrows were and are part of my Lord’s Divine plan for my life. He will redeem my suffering one day and it will end. He will make all things new and good, and right; I will be whole. In the meantime, I am a steward of the experiences, people, places, and things He ordains for my life. My responsibility is to accept them with no expectations, no exceptions, no deal-making (“if only this . . . then that”), no holding back. So that night I let both sorrows go and wept deeply for a good long while.

Sometime later I shared my inner story of this incident with my beloved Stevers. He is warm and tender at these times as if to be my Jesus with skin-on. I am so blessed to be loved by this man after God’s own heart. His response? He marveled at how long abuse can affect the life of an abused person. Years. Decades. That a person can carry hurt his or her entire life because of the evil actions of someone who hurt them when they were little. I agreed. Yet for me, the hurt is never the same each time I get to revisit it. Each time I get to grieve some more. I get to heal some more. It takes what it takes. I get to see how the Lord uses even the ugly stuff to give me tools for coping and a gift of compassion for others. If I had not developed work-a-holism and that health challenge of hypoglycemia then I would have become an alcoholic. How do I know? My siblings and Mother were alcoholics, my Dad was mentally ill. One brother who overcame alcoholism struggled to find meaningful work then tragically had a stroke and was never able to function independently again up until he died earlier this year. He suffered with unspeakable pain and spasms every waking hour of his life. He had traded his bottles for cigarettes. What I am trying to say is that each of us had horrific wounds to overcome. Today I am the only one still here of my immediate family to write the stories. Oh Lord, may these words yield some goodness beyond the tales of sorrow for the goodness that is there too.

Because there is much redeeming value in our stories beyond the sorrows. Nothing is wasted Gentle Reader, in God’s economy of time and space. Letting go of the sin of discontent, perhaps after grieving its root-cause, is a work of the Holy Spirit in our lives. He will bring you to it and see you through it. Healing is complicated and can take a very long time to process. Be encouraged. I tell you as in the song of Peggy Lee, the BAD is not all there is to a fire or the circus of the circumstances in our lives or a long lost love! There’s even more to life than the happiness of a fleeting moment such as in a windfall or slow dance with your beloved. Just go to the Cross. There you will find a peace that transcends all understanding. The best gift of all is waiting there for you this day, this night. He promises. On this we can rely.

Will you? JJ

Knees to the Grass

Humble yourself before the Lord and He will meet you there every time.

Having just whacked my shoulder with the handle of a rake, the pain seared deeply from my flesh to my soul. It is now bruised.

So cried, I did: weeping that lasted a long time. So much sorrow in my broken heart of late.

How can I go on with so many hours spent lying in bed? Seizing the last grips of life until my breathing starts again? Plans reduced then cancelled to much, much less?

The window to the neighbors’ bedroom was not far away out there in the darkness of night and my own beloved worked 2 rooms away beyond the double-paned windows

Oh how long must this sad song go on: the one that mixes grief from the death of loved ones with the pain of suffering so?

My Lord, you bestow so much goodness yet this night my heart aches for the dearth in my broken frame.

Just let it all out Gentle Julie. Your heart needs a good cleansing at the foot of my cross. For I hung there for all your sorrows with my blood dripping for your tears.

There will come a day when I will restore all that has gone before you.

There’s a period at the end of that sentence beloved one and this one too.

My love shall forever surround you, my spirit dwell within you, my angels minister for your care.

Keep seeking my face and you will find me there with you every time. I love you more than you can ever know. Just try to keep seeking and I will lead you home.

And so I shall. Oh how I long to go home! Yet weakly I shall go on . . . JJ

More Like a Dependence Day

When living in the Midwest where pyromania is out of control on Independence Day, the chemically sensitive like me gear-up for the occasion. No, not raffia pumps with ribbon ties and sparkling earrings in red, white, and blue but full-on painter’s masks in pink and yellow! Not even a coronavirus can get to me now! Other days it’s the proverbial N95 mask instead. I depend upon these tools for survival. You are only as good as your tools, right?

When a tooth extracted during the shutdown of the pandemic didn’t heal according to plan, IV ozone treatments cleared things up nicely. It only cost an additional $450! Flash forward to week 9 and FRAGMENTS of bone and tooth start pushing up from the gums that are still sore and sensitive to temperature. It’s normal, right? So I pulled out all 3 of them, cleaned up MORE PUS, rinsed with saline and the remaining antibiotic rinse I had plus some liposomal vitamin C. No prob. Things have quieted down now that I employed the problem-solving skills granted by the Lord, that I have come to depend upon. Thank you!

When convulsive episodes persist eight years later after their onset and every Practitioner consulted has not found their root cause or treatment, I take to my clinical research tools once again. Many symptoms and a new look at prior medical testing now indicate a need to revisit a cardiology work-up. And while recovering from two particularly heinous episodes today, a friend mentioned something on Facebook that will likely direct me to my next specialist. I asked my Family Practice Physician for a referral. Let’s do this. I shall depend upon you again my brilliant Doc, to help me put this together in search of a cure.

And when overly-focused on my own traumas and dramas, the recent passing of the last member of my immediate family not-withstanding, I realize that it is not my own life that is in chaos BUT THE ENTIRE NATION IN WHICH I LIVE. There is a shroud of evil darkening the patriotism and freedoms of our once United States of America. The life I am trying to live has been forever changed and the way in which I have tried to live it is increasingly changing. Political mayhem gave way to a pandemic and escalated into anarchy, the latter coming soon to a street near you. How then are we to live? We could say so much here yet I contend simply that you better depend upon Jesus now or forever hold your breath, your teeth, your head, your mind lest you too go mad.

This may have been our last Independence Day. One day soon may be our eternal days in Dependence upon that which we do not desire. As for me, dependence on the Lord is the only way to live, the only way to survive the evils of living in a fallen world, a world quickly falling into utter darkness. I may go down for good tomorrow due to illness factors or the random firing of an angry mob. Regardless, the outcome will be the same. I’ll be in paradise with my Lord and Savior, Jesus Christ, healthy and forever free.

We still have some choices Gentle Reader. Upon what have you decided to depend? JJ