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 Pilot, The Pilot’s Wife

The Pilot

Twas the night before Christmas – Aviation Style

Twas the night before Christmas, and out on the ramp, Not an airplane was stirring, not even a Champ.

The aircraft were fastened to tie downs with care, In hopes that come morning, they all would be there.

The fuel trucks were nestled, all snug in their spots, With gusts from two-forty at 39 knots.

I slumped at the fuel desk, now finally caught up, And settled down comfortably, resting my butt.

When the radio lit up with noise and with chatter, I turned up the scanner to see what was the matter.

A voice clearly heard over static and snow, Called for clearance to land at the airport below.

He barked his transmission so lively and quick, I’d have sworn that the call sign he used was “St. Nick”.

I ran to the panel to turn up the lights, The better to welcome this magical flight.

He called his position, no room for denial, “St. Nicholas One, turnin’ left onto final.”

And what to my wondering eyes should appear, But a Rutan-built sleigh, with eight Rotax Reindeer!

With vectors to final, down the glideslope he came, As he passed all fixes, he called them by name:

“Now Ringo! Now Tolga! Now Trini and Bacun! On Comet! On Cupid!” What pills was he takin’?

While controllers were sittin’, and scratchin’ their head, They phoned to my office, and I heard it with dread,

The message they left was both urgent and dour: “When Santa pulls in, have him please call the tower.”

He landed like silk, with the sled runners sparking, Then I heard “Left at Charlie,” and “Taxi to parking.”

He slowed to a taxi, turned off of three-oh And stopped on the ramp with a “Ho, ho-ho-ho…”

He stepped out of the sleigh, but before he could talk, I ran out to meet him with my best set of chocks.

His red helmet and goggles were covered with frost And his beard was all blackened from Reindeer exhaust.

His breath smelled like peppermint, gone slightly stale, And he puffed on a pipe, but he didn’t inhale.

His cheeks were all rosy and jiggled like jelly, His boots were as black as a crop duster’s belly.

He was chubby and plump, in his suit of bright red, And he asked me to “fill it, with hundred low-lead.”

He came dashing in from the snow-covered pump, I knew he was anxious for drainin’ the sump.

I spoke not a word, but went straight to my work, And I filled up the sleigh, but I spilled like a jerk.

He came out of the restroom, and sighed in relief, Then he picked up a phone for a Flight Service brief.

And I thought as he silently scribed in his log, These reindeer could land in an eighth-mile fog.

He completed his pre-flight, from the front to the rear, Then he put on his headset, and I heard him yell,

“Clear!” And laying a finger on his push-to-talk, He called up the tower for clearance and squawk.

“Take taxiway Charlie, the southbound direction, Turn right three-two-zero at pilot’s discretion”

He sped down the runway, the best of the best, “Your traffic’s a Grumman, inbound from the west.”

Then I heard him proclaim, as he climbed through the night, “Merry Christmas to all! I have traffic in sight.”

(From Dave Williams, Light Sport Aircraft, Facebook 12.24.2020)

Snoopy Flying Ace

The Pilot’s Wife

Just 3 years ago

After chants akin to nag

I gifted my true love

The journey to a flight bag.

Study hard he did so

Sans rain, sleet, and snow

VFR and 5 comps later

The man flies in the know.

But why should it end

With just takin’ to da sky

There’s always one more

Dream for this river guy.

Rolls and spins and water

Landings rather than surfs

In a home-built (or relic?)

Makes me blue like a smurf!

A hundred-dollar burger

And a few cool pics alof

Are my bennies for braving

The dreams of my spouse.

So ladies just do it

Love your man and take note

If his hanger is ever gets filled

This Master Gardener’s conservatory will have been built!

(From Yours Truly to my beloved Fly Bear, Steve!)

Merry Christmas Gentle Reader. JJ

So little. It’s still pretty

Full-time I used to serve others in my healthcare profession and now I can barely get a meal to my husband on a daily basis. My reserves for giving are diminished but not gone, or so he says.

Each night and morning I poured over my caseload, looking for the best ways to make the most of each patient’s time in occupational therapy. Shall I bring Sally a 2-pound weight that I picked up at Walmart or load up adaptive equipment for a better education and training session? Now I’m lucky if a couple of times per year, I can drop off a gift to a friend after one of my medical appointments. Or ride an exercise bike for 5 minutes in the middle of the night.

Sending a card for each birthday and gift for close family has shifted from 1) before his or her special date to 2) days or weeks afterwards. We apologize. It’s the thought that counts, right?

Then I send a PM (or is it DM?) to a friend via social media to ask how she is doing when I really need to pour out my own heart on how wretched I feel, the new symptoms and diagnoses that get added to my pile. Aren’t you tired of my tears Lord?

But enough of my sorry lot. Giving to others in my own strength will never balance the angst of my days. Pitching the good against the opposite is a mental exercise at best that risks the tasks being done for the wrong reasons; they barely even measure on the MET scale of physical activity anyways. What’s the point? My weak bones need resistive exercise as do my muscles that are softening by the day. Both my mind and my frame need REAL exercise. The kind that stretches me, tears down and re-builds muscle fibers for measurable strength. The kind that transcends a weary heart. But how is this possible? Gee. Looks like I need a refresher here on how this really works.

If I can only do a little then that little bit needs to be pretty enough. If I am to do anything significant then my strength must come from a source outside myself. I don’t have it. The Lord does! If He leads me through the Holy Spirit to these acts of grace then I trust that He will provide whatever is necessary to finish the task. This is true even if it stretches me beyond what I think I can do. His power is infinite! And if I can keep my eyes on my Jesus no matter the horror of my suffering then I know I will be stronger somewhere down the road than I ever could have imagined. Seeing our Lord’s power in our lives is how we grow our faith. Moving towards Him as He leads makes it so, makes us resilient as we go. And the more we follow His lead in His power, like a weak muscle trained over time, we will shine for His glory not ours. It’s really better that way anyways.

Doncha think, Gentle Reader? JJ

We are the People

In the book of Esther in the Bible, we learn of the near-miss annihilation of the Jewish nation because of the lies and deceit of one influential man, Haman. He first convinced King Ahasueras that Queen Esther’s Uncle should be targeted for generational feuds between their ancestors; not only Modecai but his entire people-group must be destroyed. Haman’s pride swelled as he bragged about his accomplishments to everyone, knowing his sinister plan about to unfold. But one sleepless night, God revealed to King Ahasueras through the reading of the King’s annals that Mordecai actually needed to be heralded as a hero for saving the King’s life years ago. Queen Esther and her people fasted then orchestrated events in which she could reveal the truth to her King. Haman and then his ten sons ultimately were hung on the very guillotine he had constructed for Mordecai! But what about the Hebrew nation? The edict by King Ahasueras to allow the people of Persia to destroy the Jews, including Mordecai and Queen Esther, would need to be addressed. The King turned to some very astute scribes to make the situation right, knowing that an edict by the King could not be reversed or rescinded. The Persians so feared the Hebrew nation (blessed by God) that many became Jews themselves. On the day which later became known as Purim, the Jews avenged their attackers, annihilating 75,000 Persians in their midst. The celebration of their victory continues to be celebrated to this day as the Feast of Purim.

I submit to you that metaphorically speaking, conservatives in America who believe in God are like the avengers of the Jewish nation of Persia. The parallels between this story in the Old Testament and the Presidential election in our nation are remarkable to me (with some important exceptions of course). Surrender to evil and its political ideology that is now out in the open in America, acting in unison like a Hamanian plot to destroy the once United States of America, is now set in motion unless we fast and pray like the beautiful Queen Esther. Then we must act accordingly. If we do not, I sense that we too will perish. The nation we love and our freedoms will be gone forever. Perhaps our President will seek the Lord’s wisdom some sleepless night, his modern-day legal scribes will figure out how to save our Republic, and Patriots will stand up for the freedoms that we hold dear. Will we “avenge” our attackers with truth and strength as unto the Lord such that observers will come to faith in the God through whom our nation was founded? You see I am going beyond an election here, don’t you? Of course I am. We are in a battle between good and evil, Gentle Reader. As the superpower of the world, I submit to you that the hearts of mankind are at stake right now, manifest in the events unfolding right now. The world is witnessing our nation falling apart and are all affected by it at some level.

Time is moving quickly. What will each of us be celebrating this Christmas? A feast like that of Purim or a pre-packaged COVID snack after the funeral of the once beautiful United States of America? We have survived a pandemic, riots in our streets, loss of small businesses that employ most of America, political upheaval unprecedented in our history, and paradoxical surges in our economy and military strength. We have brought peace to the world while the foundation of our own nation is crumbling. Now we the people have voted and it doesn’t even count. What a horrible way to end the year 2020! But it’s not over yet. There is something we CAN DO for the fate of the beloved nation where we shall live out our days. The Jewish nation stood up for what was right and all of the people of Persia lived in peace and prosperity for ten years until King Ahasuerus was murdered. (Yes, even after deliverance from evil, someone eventually succeeded in stealing the leader’s throne.) Our story is just as messy. People will die no matter who our President is and what political party is in power. The situation is just that volatile. The ultimate question for me is will we the people be avengers for the Lord, Jesus Christ as we fight for the nation He has given to us?

This year marks the 75th anniversary of the raising of the flag at Iwo Jima, commemorating the final stages of the Pacific War theater of WWII.

Somewhere out there

Photo by Pixabay on Pexels.com

Somewhere out there

Is the thing for which our heart longs

Or so we think.

The answer to the question

The salve for the sore

Missing until found.

Simply not true Gentle Friend

For the One Who placed the need

Meets the angst of your days.

Turn to the Lord

Sooner rather than later

Lest another day be wasted searching to no avail.

Tough lesson for me tonight so back to Your Word I go for studying some more. Meet me there? JJ