The first time I was hospitalized for congestive heart failure, I was almost given twice the medication I was supposed to have at 3am. As soon as that was resolved, I grabbed the notebook that was beside the bed and started writing everything down. That was the beginning. Since that time, not quite every single place I go, I bring with me a notebook. In it, I have all of the phone numbers of my physicians, a copy of my medical history in outline and my current medications (usually 2 copies, so they can just keep one), and a list of time-tested questions in case I freeze up and forget to ask.

It helps me to remember that Brain Blank is entirely neurological at the most primal levels — it’s not that I’m not paying attention, or that I’m not smart enough, or even that my doctors are necessarily callous/over-hurried but that the brain copes with shock in incredibly unproductive ways (even small scale shock like being asked a question unexpectedly as in pop quizzes). There is a flood of cortisol and adrenaline so that you are ready to fight/flight without thinking, and that, by definition, turns off any part of your brain that would come up with good questions. It will also greatly minimize the likelihood of remembering the answers, so it truly truly is natural and normal to feel like medical appointments are a blur. Add to that sustained ‘shock’ like pain (either chronic or acute), stress of Life stuff, and the combination is pretty brutal in an exam room with the paper sheet and the dysfunctional medical gown. In sum: Having the notebook gives me something to do, which provides emotional distance, but mostly it means that I have something to refer back to when I come back from Paleo-Mind.

Before big appointments, I write out all of my questions and review them with my spouse (he often thinks of things I didn’t). I also rehearse and model this with my teens before their interactions with medical care teams.

The thing is, sometimes it is a challenge to even know what I should be asking about. I do not know the names for all of the parts of me. There are situations where I cannot see or ‘point to’ where the pain/concern is. I try to use a guide of presence (that is, “what are the circumstances when IT happens”) or absence (as in, “what are the circumstances where I WANT it to happen and it DOES NOT”). Even that can get twisted in a hurry: I have no basis of comparison from if other people experience the presence or absence of something the way that I do to know if what I am saying will contribute to meaningful problem-solving. The nature of my illness has included conversations I never imagined having (e.g., how often and how much I urinate), to conversations I desperately need to have but are taboo (such as how fatigue impacts libido in a partnership with someone who does not have chronic illness).

I try to come prepared to learn about my body and the care/keeping of it. I bring in materials to support conversation so that I know there is shared understanding of regions of the body and what to call them. I have asked “how can I be a better patient?” with the intention of advancing my understanding for future visits, or alerting the physician that I feel we are in an ineffective dynamic. I used to feel like a failure and a freak if the visit ended without resolution. If the specialist had no idea what I was talking about, it must be my fault. I absolutely do not believe that any more; however, that’s a journal for another day.

Before I leave almost all appointments I say the following: “Let me read back to you what I’ve written down and make sure I’ve got it right.” Because that’s my ritual, doctors who I see regularly know and anticipate this; and it’s a habit I’ve practiced so much, I really have not walked out of a room without at least those answers. I still get sprung with unexpected information or questions, which I hate like a pop quiz; but I have a specific plan and that has gotten me through. If during that review a doctor interrupts/corrects me, I write that down, and go through the whole thing again. My cynical side also feels like this has established me as a much more serious self-advocate than I might otherwise be, and since I am navigating across many, many specialists there have been a LOT of times where I could provide information (recommendations, dates, etc.), faster than they could look up in my file. It also means I have clear info to compare with second opinions.

My “generic” questions are: GENERAL (1). What should I do to take care of myself? (2). What should I expect over the next few days? (3). Is there anything I should look out for (red flags)?

MEDICATIONS: (1). Tell me about the side effects: headaches, sleep, mood, sexual, weight gain/appetite/nausea, dry mouth? (2). Interactions with other medications (3). When might I anticipate change?

The answers to my General and Medications questions help re-orient me to being active in deciding IF I am going to pursue recommended next steps OR the conversation needs to continue (sometimes with another physician entirely). It is in my experience existentially critical to remember that “No, I’m not going to do that.” is mine to inhabit; it is true, and important. Knowing what my health status is and what my standards for quality of life are is critical to surviving and, ultimately, living -– those are not the same thing. Over the years I’ve come to rely on what I call the 4+1 questions as a structured way to think through recognizing and declaring when I am at this point.

I’m feeling tired, so that’s all I’m going to put for now.

End blip.

This expression was popularized by Mark Twain, which appeals to me on many levels; however, there are inconclusive reviews on how it may have originated before his use 1907. I undoubtedly heard it first from the tv show, “West Wing” and all of this is to say that I am entrenched in thinking about what do I know, how do I know it, and variations of expressing it. I wrote last about numbers and that’s still where my head is at — the alluring quality of having objective, quantifiable values which serve to communicate in a tidy way.

In November of 2020, I decided I was not prepared to continue hating my sleep experience (horrific dreams) and worrying about constant fatigue. Although I have reported these concerns to many physicians over the years, for some reason it landed differently this time and that lead to my meeting with a Sleep Specialist and, separately, a Cognitive Behavior Therapist with specific focus on Insomnia. They both wanted data tracking, and in different formats. I was/am willing to do this because it is within my capacity and I do not want to resign myself to feeling this way about 1/3 of my on-going life in perpetuity.

The thing is:

• it is itself exhausting to document all of this
• much of measures like these are poorly defined/constructed
• I am not unfamiliar or averse to data collection; however, I don’t know how to do this better.
• How do people who have even less energy or experience with analytic tools participate in this meaningfully
  • If they aren’t, what function does perpetuating these practices serve?

Documentation Weariness

If you’ve never been asked to characterize part of your experience of being you with a number or code it may be hard to explain WHY it can be an existential conflict. Or if you are in a mindset of “I would do anything to get back to normal”, exercises like this seductively feel like breadcrumbs on the path to status quo ante. I mean, maybe they ARE. Maybe both things are true: it is difficult to remember your own humanity as separate from the notes you make about yourself, AND this information is helpful towards living the human life you most want for yourself.

One of the successful uses of a rubric that I developed was with my son to support his ability to prioritize his study efforts was to review the topics and focus on what he remembered the least. Ironically, I would characterize my recollection of all of this at a 1 or a 0 if it had not been for the photo (shout out to visual cues). This was easy to use, and felt rewarding at being able to transition low rated topics to more solid recall.

Definitions and structure

Often there is a balance being struck between ease of scoring (which is different than ‘interpretation’), and how much information is actually being relayed. With the sleep diary, I am asked to characterize my night along a five-point range from “Very Poor” to “Very Good” and I have no idea how to regard that. I keep telling myself that I am empowered to come up with a rule and then just apply it consistently. But I know that I have two distinct sleep goals: (1) to feel rested with quality and quantity of sleep, and, separately, (2) to not be horrified by absurd dreams which leaves me anxious about entering sleep. There’s only one column per day, one allocation for each day and I genuinely do not want to ADD anything more to the stuff I am already writing down. It may be that I am too close to do this personally for myself.

When my Dad was declared to have an aggressive form of Amyotrophic Lateral Sclerosis (ALS), he became the 12th person I had directly interacted with to have an ALS diagnosis. I had on-hand multiple scales for characterizing ability/decline — which I used in assessment reports specific to communication complications. In my interactions with my Dad though, I realized some important distinctions were necessary.

Working with him, we developed a scale to be more refined:
5 = ABLE TO DO without apprehension or concern (e.g., or pain, weakness, etc.)
4 = Able to do WITH CAUTION + CARE (some discomfort such as strain or queasiness anticipated, may require pacing to complete)
3 = Able to do ONLY WITH STRATEGIZING ahead of time to break acts into Level 4 component steps; “warning” discomfort, must manage remaining strength/energy
2 = ONLY able to do acknowledging it WILL BE uncomfortable and depleting. Pain and queasiness distracting but manageable. Energy depleting. Weakness is distracting.
1 = MINIMALLY able to do: SIGNIFICANT CONCERN
0 = UNABLE to do; UNIMAGINABLE

I do not presently remember how our scale was received by his medical team…in many ways, I don’t care. In this method it became a useful tool for he and I to plan effectively and it served to clarify for him that progressive decline meant it was not going to get better. His previous life experience, pronouncedly different from my own, was that the strength of his will + optimism powered him through illness or injury. That is my caveat for wanting tools such as these to be “rewarding”: sometimes the trend they reveal is not one that would typically be welcomed or celebrated.

As I learn better, I aim to do better.

I am writing this out in hopes that it can stop bouncing around my head. I know I am in a hole with this and I haven’t been fully honest about the documentation that’s actually gotten me here-here. I’m supposed to be writing down my feelings as distinct from my thoughts and the internal resistance I feel towards this task is palpable to me.

I haven’t landed on WHY I find this so different compared to characterizations based on number values and rating scales. Each time I sit down to do it, my mind goes blank: a grey landscape. Every additional noise in my environment commands my attention instead, and also the laundry, or dishes, or hanging out with my family…

Nagging at the back of my head though is that I value being a Good Patient. I do not want to return to my physician without having done this. She needs me to do this so that we can advance what I value as progress towards my goals. (sigh)

Who is this helping?

In “Wounded Storyteller,” author Arthur Frank details how medical practice has evolved from localized expertise within communities who interacted with their neighbors, to industrialized depersonalized methods in which essentially strangers translate symptoms into billable codes. Being able to indicate that I gradually characterized my sleep experience from “Very Poor” to “Fair” to “Good” would be evidence; proof of benefit. I get that. As a speech-language pathologist, I have done that and, should I go back there someday, I may need to again.

Right here right now though, I have concerns that that this business of being tidy is more problematic than it is helpful. I do want to honor what physicians and medical teams know and participate in the work of my well-being. I do not want that to include shame that I did not do enough or clearly. I absolutely do not want these kinds of activities to be used against patients as proof of non-compliance or failure to follow physician’s orders.

Back when I was on dialysis, I was told that my insurance company might track my schedule to make sure that I came to dialyze when I was supposed to and stayed the full duration indicated by the discrepancy from my dry weight. If there was a concern that I wasn’t coming or left early, the insurance company might decide not to reimburse the expenses. I do not know if this was true. I am a rule-follower by nature so I absolutely was not going to miss any sessions. I was also already terrified about bankrupting my family with how expensive I was to keep alive, so I did not need a documentation/compliance scare story to add to the mix.

I am confident that there are ways to monitor and inform treatment plans. I believe that documentation is a critical element of health care…And.

“What gets us into trouble is not what we don’t know. It’s what we know for sure that just ain’t so.” — Mark Twain

End blip.