Tag Archives: learning how

taking note of it all…

Chronic Illness,

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.

For a telehealth visit on 21 January 2021, ahead of time I noted my vitals (a.m. & p.m. blood pressures from prior day, temperature & weight), and the questions I wanted to cover in our conversation. I emailed all of this to the physician ahead of time for their reference along with my most current prescriptions + schedule of when I take them.

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).

Anatomical photo of female digestive system + pelvic region with organs, muscles, and nerves labeled. Post-it notes with observations & questions are on top of areas of concern.

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.

The back page of the notebook I keep in my purse has questions that are consistently useful to me even if I cannot think of ‘new’ questions in the moment. Even if all I remember to do is ask these + note the responses, I feel better prepared.

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.

“Lies, damned lies, and statistics”

Chronic Illness,

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.

Sleep log with rows of time blocked out in coded symbols to note sleep & nap behaviors corresponding with medications (M), food (F), exercise (E) as well as track my blood pressure & a CBT-I sleep diary with columns to tabulate sleep efficiency.

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.

Study guide my teen son and I developed for his Advanced Earth Systems Science I Mid-Term with rubric for focusing effective study: 0 = no memory, 1 = remember some, 2 = remember a fair amount, 3 = I got this.

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.

Reviews of standard Activities of Daily Living (ADLs), typically have three columns: able to do (2), able to do with assistance (1), and not able to do (0). In itself it is a solid snapshot at a glance of where trends are. However, it may not represent other aspects as specifically or in a personalized way that could be relevant to the situation.

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.

Three column grid with labels for Situation, Feeling/Emotion, and Thought.

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.

Distance from “functional”

Chronic Illness, , ,

For not being a particularly mathematically-minded person, I have found a surprising effectiveness for using rating scales across a range of circumstances as a way of characterizing a state of being, communicating needs, and making plans. Downloadable .pdf

Using a standard scale of 0 to 10, I wanted to expand on describing pain to include ‘concern’ (because emotional distress is valid), and how other factors influence the perception of the magnitude of a problem &/or how it is addressed.

I was working with a man dying of ALS when I first realized that the method of using 0 to 10 to describe pain was inadequate — typically, this is used to say that 0 = no pain, and 10 is the worst pain you personally have ever felt in your life. For this man, he had chronic tooth pain and he knew there was nothing that could be done about it. As a stand-alone prompt: Does he answer the question for how he FEELS (serious pain), or is that a source of frustration since there was no relieving it? If given the opportunity to follow-up with a characterization of familiarity, fear, or expectation regarding next steps, he consistently reported that he did not want this issue to be the focus of his limited time and energy. As I began adapting this approach with myself, my family, and persons I worked with, I have been increasingly convinced that the follow-up questions are critical.

A guiding principle I try to encourage is to regard a “4” as an important opportunity of awareness. This is the point where steps need to be taken because waiting until after this will surely mean more intensive responses will be required and will take longer to have a positive effect. For example, with a headache, a 4 may mean drinking water, taking a break from technology screens, rest, and quiet. Waiting until a headache is past a 4 may well mean over the counter medication (which can take up to 45 minutes to have an effect and sometimes comes with a stomach upset), separating self from others to have dark, stillness, and silence. With emotional well-being, a 4-level of loneliness, sorrow, grief, and worry has actionable responses encouraging drinking water, connecting with trusted loved ones and conversations with counselors or mentors, spending time in relation to nature, meditation, yoga or prayer. Above a level 4 can get entangled in withdrawal, shame, resentment, depression and anxiety — these also have actionable responses, and can be compromised by related feelings of loss including of motivation or hope. Despair may well mean more precisely constructed responses with persons whose expertise is in navigating complex emotions and acquiring those appointments may take a substantial amount of (wretched) waiting time. The essential medications and therapies typically take some days to provide the necessary space for reflection and healing.

In short, it is not brave or stoic to actively not acknowledge pain/concern.

In future revisions of the chart, I may consider it more vertically, with the descriptions of the levels on one side and tiered responses on the other. Or posing an additional follow-up question, which I might characterize as “distance from functional.” As I type this, I am aware of a neck-shoulder-back pain that I woke up with. Overall, it is more of an ominous feeling of caution not to turn my head (at all), with swift and sharp pinches which stop me immediately. This is a familiar pain plus I am not afraid of it; however, I am aware that if I do not take effective steps it will be extremely difficult for me to cook dinner later (it’s my turn tonight), or even undress. Since meal preparation and clothing are basic activities of daily living (ADLs), it struck me that even a relatively minor pain/concern can have a debilitating impact on functioning. This is a different perspective on why recognizing how much of a problem a situation is becomes critical to pacing existing reserves. The increments from functioning are not necessarily of equal measure; that is, it may take awhile for a 3 to eke into a 4 but a 6 can jump to a hard 8 just because of a tense and unanticipated sneeze.

“It is not brave or stoic to actively not acknowledge pain/concern.” That’s true, but too short. a key word is “actively” because being aware of one’s own pain, concerns, and distance from functioning can be uniquely unsettling itself. Possibly because we don’t tend to talk much about this openly, it takes on a secret status and the things we don’t tell can take on a character of private disappointment all on their own. I don’t know that people intentionally choose denial. It seems more likely the default and conditioned response of being uncomfortable with notions of weakness, vulnerability, and potential to be ‘burden’.

For now, it is time for me to stop typing — I need to drink water, stretch, and find release between my shoulder blades.

End blip.

Reflecting on the expression “the treatment cannot be worse than the problem” w/i the 4+1 health questions.

Chronic Illness, COVID19, , ,
Note: Some profanity will be required.
 
Among a number of expressions that have gained prominence with COVID19 is along the lines of, “the treatment cannot be worse than the problem.” As a matter of *personal* choice, this a 100% valid decision for health care. As a matter of public policy or in the situation of someone having to make decisions on behalf of someone else, this is profoundly problematic. How you decide for yourself is totally your right, and make sure that everyone who may be involved in your care if you should ever become incapacitated knows what you want. How you decide on behalf of others should be informed by what THEY want or would want if they were able to express for themselves. This may result in conversations that are difficult, and I am very willing to support you/them in whatever ways I can.
 
I strongly believe that these conversations benefit from the structure offered by the four questions framed by Dr. Atul Gawande in “Being Mortal”, and an additional one included from Arthur Frank’s “Wounded Storyteller.” Essentially, as follows:
 
1. Do I understand what is happening?
2. What am I willing to do for a chance at staying alive?
3. What level of being alive is meaningful to me?
4. Could it get worse?
+1. If I become ill again, or when I do, how will I find ways to avoid feeling my life is diminished by illness and eventually dying?
 
Can the response be worse than the problem and still be worth pursuing? YES. I was absolutely unaware of my kidney failure until my physician had a piece of paper with numbers on it and said I had to be hospitalized immediately. The level of mindfuckery around trying to reconcile how I thought I understood my own body and how dialysis felt remains a source of intense anxiety to this day — am I as ‘well’ as I think I am, or am I actually desperately ‘sick’ on the precipice of dying in front of my family and don’t even know it? My son was uncomfortable with appendicitis, but it presented in an ‘atypical’ way which meant that he was wholly unprepared for the pain following surgery. They removed the ‘bad’ thing, so it was irreconcilable and reality- or trust-breaking for him to wake up in excruciating delirium (that passed, in time). Enduring digestive crisis with magnesium supplements, which support the health of my heart, is worth it, I think. I could go on, but it comes down to: Would I make decisions about what happens to my BodySelf for the sole reason of being a relief to others? Yes. I would endure nuisance, discomfort, boredom, loneliness, amIstillaworthyperson anxiety, and whothefuckamI pain. If you do not know from direct experience how each of those impact health care responses, you have been fortunate to avoid significant illness and perhaps should listen to many more stories from many more people before weighing in on this as a crisis for society.
 
Can the response be worse than the problem and still be worth pursuing? Well, YOU be you and tell everyone what you want for yourself. From the stance of a National and International response, we need to think carefully about what that means medically, ethically, and socially.

End blip.

Practicing Airplane Rules and the 4+1 questions around health

Chronic Illness, , , ,

My Airplane Rules Ethic is: (1) Self-care matters (put your oxygen mask on first), (2) Practice your safety plan in entirely calm/controlled ways so that it is ready (even for the extreme, however unlikely), (3) Abide a social contract that the person *after* you has a positive experience (clean the bathroom before you leave).

Relative to decision-making for health, I put forward a “safety plan” based on the  four questions framed by Dr. Atul Gawande in “Being Mortal”, and an additional one included from Arthur Frank’s “Wounded Storyteller.”  Essentially, as follows:

1. Do I understand what is happening?
2. What am I willing to do for a chance at staying alive?
3. What level of being alive is meaningful to me?
4. Could it get worse?
+1. If I become ill again, or when I do, how will I find ways to avoid feeling my life is diminished by illness and eventually dying?
I will use a personal example of my own to illustrate:  my blood pressure has been high for awhile now.
1. Do I understand what is happening? Yes. I have a significant family history of hypertension (high blood pressure), and I only have one functioning kidney (my native/own kidneys stopped working in 2009, I have a transplant kidney since 2011). High blood pressure often has no “feel-able” symptoms, but wears on the blood vessels and organs (including heart and kidney). In addition to inherent risks such as a stroke, hypertension is a threat to my donated kidney.
My not-a-doctor understanding of blood pressure is that it is measured with two numbers, systolic and diastolic.  Systolic is the pressure when the heart is actively in contraction (beating), diastolic is the pressure exerted in the pause between beats.  It was explained to me that blood vessels have some amount of flexibility to respond to the amount of tension pushed on them — like a balloon which can ‘bulge’ outward when pressure is applied.  An aneurysm occurs when the vessel bursts.
2.  What am I willing to do for a chance at staying alive? This may seem like an extreme question under this particular set of circumstances; but it speaks to my belief that if I have no practice at even considering an extreme, I will be less able to respond to it. Right now, the recommended course is to approach different pharmacological measures — take more and/or other medications. Kidney Transplant Recipients may take between 2 and 5 different medications just related to blood pressure and heart care. Depending on how a person evaluates anti-anxiety and anti-depressants for being a part of stress management, I am currently on 3 meds explicitly dedicated to cardiac and hypertension issues. I do not have the luxury of reservations about pharmaceuticals and I know that this is part of my life. Adding or revising something is fine, WITH ONE BIG CAVEAT. I have discovered in the last year or so that medications which likely give me headaches and migraines are more debilitating than when I was younger. Knowing that about myself, it becomes a discussion of balance. Does lowering my blood pressure mean that I am reduced to dark, quiet rooms lying down for x number of days (without being physically able to tolerate light, or process/comprehend reading)? Does that duration end as I adapt to the medication or is that a ‘side effect’ of the medication? How do these relate to my sense of my self as a spouse or parent? I’m already not working (and would like to), what would this state do to my sense of self-worth? Knowing this trend about myself has had HUGE implications for conversations with my physicians and pharmacists. It was also respectfully recommended that I lose weight; which, sure. I think that is indisputable. I also have no belief, literally none, that I can achieve that. I ~may~ be able to stem the rate of increase, but I have no personal history that suggests I can achieve this particular category of loss.
3. What level of being alive is meaningful to me? Being in a dark quiet room, alone, isn’t my problem with migraines. It’s being away from my family and the goings-on of life with them; the joy we share, and the burden it places on all of them when I am not available to do my part. If it is a duration of acclimating: We agree as a family, it is worth doing. If it is a permanent state of a medication, we agree as a family, I am supported in making other decisions. A meaningful life to me includes being able to interact with my loved ones (near and far).
4. Could it get worse? A moment of pause in the conversation with my physician about all of this was when he asked how long I have had my transplant. This upcoming July (2021) will be TEN YEARS. A decade. I was reveling in this moment and vibing gratitude to my donor (who is still living) and his family, when I noticed my doctor had a more concerned look and *that* really gave me pause. I am proud of what I have been able to achieve with the support of my family and Doug and also the love and support of so many others. In his concerned look, I realized that he was doing a different calculation related to longevity. How do I support this amazing gift? Right now, Doug Kidney continues to do wonderfully well. I always want my decisions and behavior to respect that. If there were things *I* COULD do, but didn’t, that would be exponentially worse. (Refer back to the weight loss thing). There are plenty of aspects beyond my control and I receive that awareness with mortal humility. And there are other ways it could get worse, e.g., if I were to have a stroke.
+1. If I become ill again, or when I do, how will I find ways to avoid feeling my life is diminished by illness and eventually dying? For myself, I am not at odds with illness and death. I do not abide ‘war’ metaphors with my personhood, so I am not in a battle against a variation of Before-Me or opposing death. For how I relate to people I love, I do not want to increase the suffering or toil experienced by others in relation to my health, illness, or dying. So one of the ways I find is to now have conversations about it, to at least let it be known that I am not afraid of that. To gauge from the people most close to me and directly related to my well-being, how to support their well-being in the process. It’s an on-going story, and it unfolds as it does.
End blip.