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

Changing seasons, changing gears

As the winter loses its harshness on this second day of March, so have I. Seems that I am letting go of a few things inside and out as a change of season has landed on our doorstep . . .

Our trip to Mayo Clinic ended with a focus much different than the one we had when we arrived. Briefly, the expert neurologist informed us that my labs that I had painstakingly collated from home were “garbage,” that my problems appeared to be psychiatric, and that further testing would be a waste of money: we see 150,000 people a year in the Autoimmunity Clinic. You don’t have it! A second neurologist expert used more functional terms yet still claimed that “even a 3rd year medical student knows the difference” in the various differential diagnoses. So we (my healthcare providers to date + myself) are idiots? So it seemed as we entered the weekend in Rochester, Minnesota . . .

Six days after that first appointment, the shock of what they were telling us had worn off. The exhaustion and soreness from extensive lab testing, EEG, lumbar puncture, and 5 additional consultations gave way to a new direction in my ongoing recovery from a serious illness. It was a tough mental journey while literally trapped on Sunday in a Minnesota blizzard but I did get there. First, on Monday an Endocrinologist determined that I was on too much thyroid medication and it could be contributing to my symptoms. Holy cow! The new medication was ordered that afternoon and sent on its way to our home address. Days later, the adjustment process is both rocky and underway.

Second, the physical rehabilitation department has a special program for what they term a “Functional Movement Disorder.” The physical and occupational therapists retrain the brain using specific balance, breathing, and movement techniques within the context of stimuli for me that trigger my convulsive episodes. Interesting. A trial run of this approach was horrific! In retrospect however, I recalled an evaluation in a local Balance Center 2 years ago and treatment that was recommended for a “Mild Vestibular Disorder;” it was also horrible and I couldn’t do it in tandem with other treatments my Doctor recommended at the time. The Mayo Clinic staff say that their approach is different so I decided to begin their PT and OT home programs regardless. What if it helps? In 3 days since then the convulsive episodes have not yet changed but my balance is improving! Yay!

I don’t have an autoimmune disease as defined by the Mayo Clinic. My labs are also negative for various infections and inflammation, glucose and other markers for which my blood and cerebral spinal fluid were tested. But some other labs are waaaaaaaay off and those are the ones in focus right now. If I can progress in my home exercise program, and I suspect that I will do so quickly, I have the option to return to Mayo Clinic for a 5-day intensive Functional Movement Disorders Program. Perhaps within a couple of weeks I will know if this Program will be effective for me: if the techniques begin to change any aspect of the episodes then, Lord willing, I hope to return to the Mayo Clinic. By then my thyroid status should be moving in a better direction as well. It’s all good I guess.

Funny how enduring very early morning appointments under duress in a strange place with 1-2 hours of sleep painted a much different picture of me to these clinicians than what I am presenting now! Tonight I still feel depleted yet my stress level has gone down significantly. All of the laundry and unpacking is done along with the myriad of things you have to do after returning from a 9-day medical trip. (Our trip to Mayo Clinic was extended twice to complete all of the consultations recommended and requested.) The expenses were immense and we haven’t even seen the medical bills yet! (Did I mention that the water heater needed replacing 3 days later? Ugh.) Still I am stabilizing and in a better place than when I was struggling to just breathe 2 weeks ago.

The seasons are about to change and the gears of treatment planning for me are moving forward as well. Gentle Reader, you know my mantra will remain that Lord willing, I am going to get well! And to Him be the glory! I am grateful that Steve and I got to go to the Mayo Clinic and learn so much on so many different levels. What other levels you ask? Well that will be a bit o’ prose for another day of course. Until then Godspeed my friends, JJ

Countdown to Mayo

I’m kind of freaking out over here. No really. You would think I was preparing to go for the biggest medical evaluation of these 8 1/2 years battling a serious illness, or something. Well maybe I am!

The little city that comprises Mayo Clinic: most buildings and surrounding businesses are connected via the underground Subway Level. You may never have to go outside in the cold!

Some of my medical conditions have flared a bit lately, requiring medication and distracting me from my primary goal at the moment: preparing for a consultation at the famous Mayo Clinic. I have SIX medical appointments this week alone, FOUR next week! Gratefully, the locations of these appointments have put me in the proximity of places from which I need to gather medical records; one of them proved to be timely in addressing the flare-up of an acute, stress-related condition: shingles! Thank the Lord I caught that one early! Ugh. And just about everything related to my care will have been updated by the time we leave for Rochester, Minnesota: the biggest snow belt of the United States of America! Not that I am stressing over that one as well? Maybe so.

My beloved is both helping and complicating the process with his energetic ideas, last-minute plans, and on again/off again pursuit of a better, new-used truck. Turns out we are letting the last one go for now. Yay! There are always extra expenses and things to do when you make a major purchase. Now is not the best time for us to buy a truck! We really need to think through this purchase a little more, focus on our trip to the “Mayos,” and get some other proverbial ducks in a row. Steve will still be off working hard and doing his various activities in the meantime before we leave . . . seeya for dinner or at bedtime when you return home my love. (Yes, we still have a very late household.)

What’s left to do:

  • Receive the medical records from the Doctor and 2 hospitals I have visited the most.
  • Organize and condense hundreds of pages of test results into about 50 pages, labeled in some meaningful way.
  • Confirm arrangements with the hotel who promises NOT to use fragranced products in our room prior to our arrival. So bummed that an Airnb didn’t work out nor the Serenity House Network.
  • Pack WARM clothing, dog food, new dog medications, numerous supplements and medications for me, and enough food to get us through the first few days in the northern tundra. Gratefully our hotel room will have a kitchenette; it’s too frigid for our usual mode of camping via our “mobile clean room.” Most important on the packing list of my beloved: cross-country skis! I may take my snowshoes as well.
  • All the other stuff you do when away from home like laundry, placing he mail on hold, watching the weather here to have the snow shoveled when we are away, watching the weather there to confirm suitable road conditions, and the like. Should be less work than camping for sure!

While this process is exceedingly stressful when still battling a serious illness with bad convulsive episodes virtually every day, I am exceedingly grateful for the opportunity to got to the Mayo Clinic. Thank you Lord! It’s rated the best hospital in America! The top Doctors in the area of autoimmunity and neuroimmunology conduct research and see patients at the Mayo Clinic in Rochester. I have heard first-hand from some of my new Doctor’s patients and they state that he provides excellent care. Yay!

I am also glad that I did not go the Mayos 3 years ago when I was looking for new answers to troubling medical questions. Since then, we have further tested and treated for Chronic Lyme disease, lowered my burden of heavy metals, healed from various dental procedures and treatments, investigated numerous other potential infections, addressed/ongoing orthopedic issues, completed a comprehensive cardiac work-up, and even received genetic testing and coaching. It’s been a busy 3 years! All of these conditions could have explained this horrible illness but they did not. Good news: I can now tolerate more of the supplements and medications that are needed to re-build my health (which was impossible to do without triggering convulsive episodes in the past).

My prayer has always been that something of value would come from over 8 years of daily struggle. The Lord has been faithful to see us through even the darkest hours where demonic influences were palpable, suffering greater than I can even describe. Both Steve and I have been tested beyond what we thought we could ever bear yet the Lord has met us, sustained us, even carried us. There were sweet moments along the way that served to encourage us. We understand that others have been encouraged by our testimony as well. Yay God! Overall, these past 3 years preparing to go to the Mayo Clinic certainly were not wasted, that is for sure. It’s time to rally for a cure.

Let’s hope so, eh Gentle Reader? We are hopeful again! JJ

This Distance Caregiver Thing

I may not be cut out to be a personal caregiver.  After 3 decades of working as a healthcare professional and caring for a thousand or more adults over my career, you would think that this would come easy for me.  It is not.

It’s one thing to work with up to twenty different personalities in a single day for 30 to 60 minutes at a time, trying to facilitate a therapeutic experience that is meaningful for the person and billable to his or her insurance company.  I learned to quickly develop a rapport with each individual, turn our focus to the therapy evaluation and treatment process, and wrap it all up with a plan for the next session or discharge.  Often the most challenging patients were put on my schedule because of my experience working in mental health settings and with persons diagnosed with dementia.  Many were depressed, angry, resistant, unable to focus for more than a brief moment, or simply were not coherent at all.  I would often have to come back to a person’s room several times a day or miss my own lunch break to facilitate a feeding session during his or her mealtime while my tummy growled.  There were the difficult families, co-therapists who would “steal” your patient throwing off your schedule, the CNAs who wouldn’t bring the client to the clinic, or the patient who almost always needed a diaper change before we could fit in any therapeutic activities.  Standing tolerance, functional transfers, and self care were easy goals to fit in when the nursing staff just couldn’t fit in the care needs of their residents; occupational therapy gotter done.  I wiped a lot of bums in the process.

It’s another thing to try to help an aging family member 1,000 miles away with a range of personality, behavioral, cognitive, and early physical changes.  I am having difficulty managing the frustration of dealing with a person who can make decisions one day and not the next, seem to engage in manipulation/pity partying/whining then be as sweet as sugar, ruminate on minute details for hours, and complain more than converse about most everything else.  She has changed this past year for sure then other times she seems just like her old self.  I just didn’t see some of these more difficult characteristics before this year and before I understood that the diagnosis of a brain disease has made everything in her life more complicated.  Of course she wants to make her own decisions and we agree.  Of course it is hard even a year after diagnosis to accept that she is having problems and needs help.  And when depression, anxiety, and compulsive tendencies take over, it is nearly impossible to help her to keep moving forward.  I just don’t know what to say or do sometimes.

I could do nothing.  My husband and I could do nothing.  Instead we have offered to help and have devoted probably 100 hours of such thus far.  She has asked to stay with us this summer then backpedaled when picking apart every detail of the visit that will not be perfect, problem that will not be solved in the way she would like.  I am sorry.  We just cannot move across country to cater to your every need in sunny Florida my dear!  There are always limitations to what any caregiver, professional or family member, can do for a person in need.  We will likely continue to help her and have started to set some boundaries too.  I am still in recovery from a serious illness and, while I can do more than when I first discovered her illness just 3 months ago, there are limits.  Should she come she will have to contribute some financially and is reluctant to do so.  She will need to follow the routines of our household and is reluctant to do so.  She will need to leave a tropical climate for the ravages of the four seasons in the Midwest and is reluctant to do so.  She wants to see what it would be like to live with us but isn’t sure she wants to come for a visit.  Whatcha gonna do lady?

Tonight I am frustrated.  The Lord has set me on a path to healing with a trip to a medical specialist that happened to reside in a town near my beloved family member out of state.  It seemed to be providential that I would spend some time caring for her as I could when in town for medical visits.  We prepared for each trip for many hours on the phone and followed up for many more thereafter.  I helped her with 2 day-long projects in-person with great physical consequences for me after the last time I was in her town:  travelling alone for the first time in over a decade and only 5 weeks into recovery from a new treatment that is working!  Geez oh man.  I just don’t know how much more I can do until I am further along in my healing process.

The stress of caring for my beloved family member, even at a distance, is weighing heavily on my heart and frame tonight.  I know I am called to help her some.  The amount is unclear for every time I set a boundary there is push-back.  My ability to manage stress has changed since battling a serious illness  for over six years.   I am saying no, making things as clear as I can.  My hubby wants to accommodate her this summer (and permanently if desired) as best we can yet to do so could create some financial and scheduling chaos.  My beloved family member is not yet willing to consider some things that we see need to be done for her personal protection and safety long-term.  We understand that these are big decisions.  However, waiting seems to just foster more indecision on her part, more stress on our part as her potential caregivers.  Dear Lord, what shall we do?

We are grieved that my family member has strained relationships with several family members who are not fully ready to attend to all that is needed to care for her.  She hasn’t been able to talk directly with them yet which puts us in an awkward situation with them should she have us proceed in our role as caregivers.  We are grieved for the sorrows that her and her children have endured trying to make sense of the heartaches in their pasts and how it strains their relationships today.  Conversely, I have only good memories with my family member so I’d like to think that I am a little more level-headed in honoring her wants and needs.  Who knows?  It is still hard to care for her varying emotional states on a daily basis.  Good golly, why still struggle when there are two people who love you, seem to care about you the most right now, and are willing to invest their time and energies in doing so?  Help us out here my dear:  will you be spending the summer with us or not?  Will we be making some major purchases to help make the visit more comfortable for all of us or not?  I do hope we know the answers to these questions in a couple of days.  This distance caregiver thing is running me ragged!

Stay tuned, Gentle Reader.  We are praying for guidance, peace, and the same for our family.  Let’s all take a deep breath and take care, k?  JJ