The prompt matters when using Large Language Models (LLMs) and AI in healthcare

by Dana Lewis

I see more and more research papers coming out these days about different uses of large language models (LLMs, a type of AI) in healthcare. There are papers evaluating it for supporting clinicians in decision-making, aiding in note-taking and improving clinical documentation, and enhancing patient education. But I see a wide-sweeping trend in the titles and conclusions of these papers, exacerbated by media headlines, making sweeping claims about the performance of one model versus another. I challenge everyone to pause and consider a critical fact that is less obvious: the prompt matters just as much as the model.

As an example of this, I will link to a recent pre-print of a research article I worked on with Liz Salmi (pre-print here).

Liz nerd-sniped me about an idea of a study to have a patient and a neuro-oncologist evaluate LLM responses related to patient-generated queries about a chart note (or visit note or open note or clinical note, however you want to call it). I say nerd-sniped because I got very interested in designing the methods of the study, including making sure we used the APIs to model these ‘chat’ sessions so that the prompts were not influenced by custom instructions, ‘memory’ features within the account or chat sessions, etc. I also wanted to test something I’ve observed anecdotally from personal LLM use across other topics, which is that with 2024-era models the prompt matters a lot for what type of output you get. So that’s the study we designed, and wrote with Jennifer Clarke, Zhiyong Dong, Rudy Fischmann, Emily McIntosh, Chethan Sarabu, and Catherine (Cait) DesRoches, and I encourage you to check out the pre-print and enjoy the methods section, which is critical for understanding the point I’m trying to make here. 

In this study, the data showed that when LLM outputs were evaluated for a healthcare task, the results varied significantly depending not just on the model but also on how the task was presented (the prompt). Specifically, persona-based prompts—designed to reflect the perspectives of different end users like clinicians and patients—yielded better results, as independently graded by both an oncologist and a patient.

The Myth of the “Best Model for the Job”

Many research papers conclude with simplified takeaways: Model A is better than Model B for healthcare tasks. While performance benchmarking is important, this approach often oversimplifies reality. Healthcare tasks are rarely monolithic. There’s a difference between summarizing patient education materials, drafting clinical notes, or assisting with complex differential diagnosis tasks.

But even within a single task, the way you frame the prompt makes a profound difference.

Consider these three prompts for the same task:

  • “Explain the treatment options for early-stage breast cancer.”
  • “You’re an oncologist. Explain the treatment options for early-stage breast cancer.”
  • “You’re an oncologist. Explain the treatment options for early-stage breast cancer as you would to a newly diagnosed patient with no medical background.”

The second and third prompt likely result in a more accessible and tailored response. If a study only tests general prompts (e.g. prompt one), it may fail to capture how much more effective an LLM can be with task-specific guidance.

Why Prompting Matters in Healthcare Tasks

Prompting shapes how the model interprets the task and generates its output. Here’s why it matters:

  • Precision and Clarity: A vague prompt may yield vague results. A precise prompt clarifies the goal and the speaker (e.g. in prompt 2), and also often the audience (e.g. in prompt 3).
  • Task Alignment: Complex medical topics often require different approaches depending on the user—whether it’s a clinician, a patient, or a researcher.
  • Bias and Quality Control: Poorly constructed prompts can inadvertently introduce biases

Selecting a Model for a Task? Test Multiple Prompts

When evaluating LLMs for healthcare tasks—or applying insights from a research paper—consider these principles:

  1. Prompt Variation Matters: If an LLM fails on a task, it may not be the model’s fault. Try adjusting your prompts before concluding the model is ineffective, and avoid broad sweeping claims about a field or topic that aren’t supported by the test you are running.
  2. Multiple Dimensions of Performance: Look beyond binary “good” vs. “bad” evaluations. Consider dimensions like readability, clinical accuracy, and alignment with user needs, as an example when thinking about performance in healthcare. In our paper, we saw some cases where a patient and provider overlapped in ratings, and other places where the ratings were different.
  3. Reproducibility and Transparency: If a study doesn’t disclose how prompts were designed or varied, its conclusions may lack context. Reproducibility in AI studies depends not just on the model, but on the interaction between the task, model, and prompt design. You should be looking for these kinds of details when reading or peer reviewing papers. Take results and conclusions with a grain of salt if these methods are not detailed in the paper.
  4. Involve Stakeholders in Evaluation: As shown in the preprint mentioned earlier, involving both clinical experts and patients in evaluating LLM outputs adds critical perspectives often missing in standard evaluations, especially as we evolve to focus research on supporting patient needs and not simply focusing on clinician and healthcare system usage of AI.

What This Means for Healthcare Providers, Researchers, and Patients

  • For healthcare providers, understand that the way you frame a question can improve the usefulness of AI tools in practice. A carefully constructed prompt, adding a persona or requesting information for a specific audience, can change the output.
  • For researchers, especially those developing or evaluating AI models, it’s essential to test prompts across different task types and end-user needs. Transparent reporting on prompt strategies strengthens the reliability of your findings.
  • For patients, recognizing that AI-generated health information is shaped by both the model and the prompt. This can support critical thinking when interpreting AI-driven health advice. Remember that LLMs can be biased, but so too can be humans in healthcare. The same approach for assessing bias and evaluating experiences in healthcare should be used for LLM output as well as human output. Everyone (humans) and everything (LLMs) are capable of bias or errors in healthcare.

Prompts matter, so consider model type as well as the prompt as a factor in assessing LLMs in healthcare. Blog by Dana M. LewisTLDR: Instead of asking “Which model is best?”, a better question might be:

“How do we design and evaluate prompts that lead to the most reliable, useful results for this specific task and audience?”

I’ve observed, and this study adds evidence, that prompt interaction with the model matters.

A Tale of Three Artificial Intelligence (AI) Experiences in Healthcare Interactions

by Dana Lewis

AI tools are being increasingly used in healthcare, particularly for tasks like clinical notetaking during virtual visits. As a patient, I’ve had three recent experiences with AI-powered notetaking tools during appointments with the same clinician. Each time, I consented to its use, but the results were very different across the three encounters. The first two involved similar tools with mostly good results but surprising issues around pronouns and transparency of the consent process. The third was a different tool with a noticeable drop in quality. But what really stands out, when I compare these to a visit without AI, is that human errors happen too — and the healthcare system lacks effective processes for identifying and correcting errors, no matter the source.

Encounter One: Good Notes, Incorrect Pronouns

At the start of my first virtual appointment, my clinician asked for my permission to use an AI-powered tool for notetaking. I consented. After the visit, I reviewed the clinical note, and the summary at the top described me using “he/him” pronouns. I’m female, so they should have been “she/her”.

The rest of the note was detailed and clinically accurate and useful. But the pronoun error stood out. It seemed like the AI defaulted to male pronouns when gender information wasn’t explicitly mentioned, which made me wonder whether the model was trained with gender bias or if this was a design flaw in this tool.

Encounter Two: Clarifying Pronouns, Learning About Chart Access

At the next appointment, my clinician again asked for consent to use an AI-powered notetaker. I agreed and pointed out the pronoun error from the previous visit, clarifying that I am female and use she/her pronouns. My clinician looked at the prior note and was equally puzzled, commenting that this issue had come up with other patients — both directions, sometimes assigning female pronouns to male patients and vice versa. The clinician mentioned that the AI system supposedly had access to patient charts and should be able to pull gender information from existing records. That really surprised me: the consent statement had described the tool as a notetaking aid, but nothing had been said about access to my full chart. I would have given permission either way, but the fact that this hadn’t been disclosed upfront was disappointing. I had understood this to be a passive notetaking tool summarizing the visit in real time, not something actively pulling and using other parts of my health record.

This time, the pronouns in the note were correct (which could be because we talked about it and I declared the pronouns), and the overall summary was again accurate and detailed. But the fact that this was a recurring issue, with my provider seeing it in both directions across multiple patients, made it clear that pronoun errors weren’t a one-off glitch.

Encounter Three: A Different AI with Worse Results

By the third appointment, I knew what to expect. The clinician again asked for consent to use an AI notetaker, and I agreed. But after reviewing the note from this visit, two things stood out.

First, the quality of the notetaking was noticeably worse. Several errors were obvious, including situations where the note reflected the exact opposite of what had been discussed. For example, I had said that something did not happen, yet the note recorded that it did.

Second, this time the note disclosed the specific software used for notetaking at the bottom of the document. It was a different tool than the one used in the first two visits. I hadn’t been told that a different AI tool was being used, but based on the change in quality and the naming disclosure, it was clear this was a switch.

This experience reinforced that even when performing the same task — in this case, AI notetaking — the software can vary widely in accuracy and quality. I much preferred the output from the first two visits, even with the initial pronoun error, over the third experience where clinically significant details were recorded incorrectly.

Notably, there doesn’t seem to be a process or method (or if there is one, it is not communicated to patients or easily findable when searching) to give the health system feedback on the quality and accuracy of these tools. Which seems like a major flaw in most health systems’ implementations of AI-related tools, assessing and evaluating only from the healthcare provider perspective and overlooking or outright ignoring the direct impact on patients (which influences patient care, the clinician-patient relationship, trust with the health system….).

A Human-Only Encounter: Still Not Error-Free

To give further context, I want to compare these AI experiences with a separate virtual visit where no AI was involved. This was with a different clinician who took notes manually. The pronouns were correct in this note, but there were still factual inaccuracies.

A small but clear example: I mentioned using Device A, but the note stated I was using Device B. This was not a critical error at the time, but it was still incorrect.

The point here is that human documentation errors are not rare. They happen frequently, even without AI involved. Yet the narrative around AI in healthcare often frames mistakes as uniquely concerning when, in reality, this problem already exists across healthcare.

A Bigger Issue is Lack of Processes for Fixing Errors

Across all four encounters — both AI-assisted and human-driven — the most concerning pattern was not the errors themselves but the failure to correct them, even after they were pointed out.

In the first AI note where the pronouns were wrong, the note was never corrected, even after I brought it up at the next appointment. The error remains in my chart.

In the human-driven note, where the wrong device was recorded, I pointed out the error multiple times over the years. Despite that, the error persisted in my chart across multiple visits.

Eventually, it did affect my care. During a prescription renewal, the provider questioned whether I was using the device at all because they referenced the erroneous notes rather than the prescription history. I had to go back, cite old messages where I had originally pointed out the error, and clarify that the device listed in the notes was wrong.

I had stopped trying to correct this error after multiple failed attempts because it hadn’t impacted my care at the time. But years later, it suddenly mattered — and the persistence of that error caused confusion and required extra time, adding friction into what should have been a seamless prescription renewal process.

My point: the lack of effective remediation processes is not unique to either AI or human documentation. Errors get introduced and then they stay. There are no good systems for correcting clinical notes, whether written by a human or AI.

So, What Do We Do About AI in Healthcare?

Critics of AI in healthcare often argue that its potential for errors is a reason to avoid the technology altogether. But as these experiences show, human-driven documentation isn’t error-free either.

The problem isn’t AI.

It’s that healthcare systems as a whole have poor processes for identifying and correcting errors once they occur.

When we evaluate AI tools, we need to ask:

  • What types of errors are we willing to tolerate?
  • How do we ensure transparency about how the tools work and what data they access?
  • Most importantly, what mechanisms exist to correct errors after they’re identified?

This conversation needs to go beyond whether errors happen and instead focus on how we respond when they do.  It’s worth thinking about this in the same way I’ve written about errors of commission and omission in diabetes care with automated insulin delivery (AID) systems (DOI: 10.1111/dme.14687; author copy here). Errors of commission happen when something incorrect is recorded. Errors of omission occur when important details are left out. Both types of errors can affect care, and both need to be considered when evaluating the use of AI or human documentation.

In my case, despite the pronoun error in the first AI note, the notetaking quality was generally higher than the third encounter with a different AI tool. And even in the human-only note, factual errors persisted over years with no correction.

Three encounters with AI in healthcare - reflecting on errors of omission and commission that happen both with humans and AI , a blog post by Dana M. Lewis from DIYPS.orgAI can be useful for reducing clinician workload and improving documentation efficiency. But like any tool, its impact depends on how it’s implemented, how transparent the process is, and whether there are safeguards to address errors when they occur.

The reality is both AI and human clinicians make mistakes.

What matters, and what we should work on addressing, is how to fix errors in healthcare documentation and records when they occur.

Right now, this is a weakness of the healthcare system, and not unique to AI.

Infection is not inevitable: how to stop the spread of infections like COVID-19, flu, RSV, colds, and more in your house

by Dana Lewis

I observe a number of people who seem to think it’s inevitable that once someone gets sick, the rest of the house is going to get sick with 100% certainty.

Nope.

First of all, household transmission rates are less than 100% for all of these conditions, even if you didn’t take any precautions or make any behavior changes.

Secondly, with knowledge about how these things spread and some mitigation measures, you can reduce this a lot – and in some cases to nearly zero.

I will caveat: that of course depending on the situation some of these precautions may not make sense or be possible. For example, if you have kids, your exposures may be different. We don’t have kids in our house, so we are dealing with adult to adult possible transmission. That being said, some of these things may still be worth doing to some degree, to cut down the risk of exposure and/or to limit the viral dose you are exposed to, even in a situation that is less straightforward like a parent taking care of sick kids.

PS – if you’re reading this in January 2025 and don’t read the rest, make sure you’ve gotten your flu shot (yes, it helps) for the 2024-2025 flu season. No, it’s not too late. If you’re >65, you should also check about the RSV vaccine (which like the flu shot is a seasonal vaccine). It’s not too late and given the current high rates of RSV and flu (and soon to be uptick in COVID), they can help prevent getting or limit the severity if you do get exposed.

Our experience preventing the spread of RSV and the common cold

I can speak with recent, practical experience on this.

Twice.

First, let’s talk about RSV.

Before Thanksgiving, Scott and I were exposed to a nibling (aka a niece or nephew – of which we have 10 plus several honorary ones!) who had what we thought was a lingering cough from a cold from a few weeks ago. Because I am avoiding infection, I wore a mask inside and did not get up close to the nibling, so as a result of all of this likely had minimal exposure. Scott did not mask and had spent a lot more time with this nibling hanging all over him and coughing near or on him. Within 48 hours, he started to get symptoms of something.

We activated our plan for household transmission avoidance. Well, with a rolling start: Scott recognized by Thanksgiving evening that he was starting to feel unwell and had a tiny bit of coughing. I thought I could hear something in his chest differently, in addition to the occasional cough, so I went into full precaution mode while Scott did a partial precaution mode. This meant we set up air purifiers by each of our beds, and a fan pointed in my direction so all air was blowing away from me. I also wore a mask to go to sleep in. (This was super annoying and I don’t like doing this, especially because I usually take a shower and go to bed with wet hair. Wearing an n95 with head straps on wet hair plus having a fan and purifier blowing on me is chilly and unfun.) I would’ve preferred Scott to mask, too, or go to the guest bedroom to sleep, but it was late in the evening; he wasn’t convinced he was really sick; and I was too exhausted to argue about it on top of the fact that we were leaving on a trip the next morning. So he did not mask that night.

The next morning, though, he was definitely sick. He tested negative for COVID, and the nibling and everyone else from that house had been testing for COVID and negative, so we were fairly confident based on serial testing that this was not COVID. At the time, the thought was this was a common cold.

Since we were planning to mask in indoor spaces, anyway, including in the airport and on the plane, we felt comfortable going on our trip as planned, because we would be unlikely to infect anyone else. (This includes no indoor dining: we don’t take off our masks and eat inside.)

Because Scott realized he was sick, he masked from that point forward (with a non-valved N95). We both masked in the car, in the airport, on the plane, and again when we arrived while driving in the rental car. Then a challenge: we needed to eat dinner (we got takeout), and we were sharing a hotel room overnight. We switched from a hotel room with a king bed to a room with two queen beds, which would give us some more space overnight. But we took turns eating dinner unmasked in the hotel room (it was too cold to be outside) with the far-UVC lights on and the purifiers around each of us when we ate. While we ate, the other person was masked. (And I went first, so there was no unmasked air from Scott while I was eating and he went second). We also took turns showering, again with me going first and him not having been in the bathroom unmasked until after I had gone in. Other than that, we stayed masked in the hotel room including overnight, again with purifiers between us and the far-UVC lights running.

(This hotel did not have windows that opened to outside, but if there had been windows I would’ve eaten in front of the open window and we would’ve likely kept it cracked open and the heat turned up, to improve the room’s ventilation).

The next day, we had more of a drive, and again we masked. We also slightly rolled down the windows in the backseat to improve ventilation. Scott sometimes took his mask off for comfort stretches, because he was driving, but put it back on fully and sealed it before coughing. I kept my mask on without ceasing. We did a 4.5 hour drive this way.

Luckily, once we arrived at our destination, there was a spare bedroom, so that became Scott’s headquarters. He stayed masked in the living room/shared areas. He sat downwind outside and masked up when coughing if anyone was outside. We left the sliding door to the outside cracked open, in order to keep the air in the common areas well-ventilated. This worked, because we were able to keep CO2 levels (a proxy for ventilation) down below 700 ppm most of the time.

Because we had separate bedrooms, we did not mask while sleeping the rest of the week, because we each had our own rooms (and own airflow). I did keep a purifier running in my room all week, but that’s my habit regardless because I’m so allergic to dust.

And guess what? It all worked. We masked again on the drive back to the airport and in the airport and on the plane and again once we got home.

I never got RSV. The four other adults we spent time with and shared a house with….also did not get RSV. So we are pretty confident that the transmission chain stopped completely at Scott.

In summary, what worked:

  • Masking in shared spaces, and two-way masking when it wasn’t possible to ventilate
  • When we had to sleep in the same room, two-way masking even for sleeping overnight
  • Scott masking in shared spaces that were well ventilated, and often left the room to go cough even when masked (or coughing outside). This often meant he masked, but the rest of us did not mask inside the whole time.
  • Generally keeping distance. Droplets were managed by the N95 mask, and we were ventilating to reduce aerosol transmission risk, but still keeping physical distance to further reduce the risk.

RSV is *very* transmissible especially with aerosols, and Scott was coughing a lot all day and night. (At one point, his Sleep Cycle app was estimating 18 coughs per hour). It took a long time for that to get down to normal, so he continued to sleep in our guest room when we got back and we continued to ventilate well even when we gradually reduced masking once he stopped coughing. It took about 10 or so days for all of his biometrics to normalize, and about 14 days for his cough to completely go away. It probably was closer to three weeks before he finally felt all recovered.

So with that timing in mind, you know what happens 4 weeks after Thanksgiving? Christmas/other end of year holiday gatherings.

We had plans to see 8 kids and 8 adults (plus us) for Christmas. And at Christmas, it seemed like everyone had a cold already. So again, I went in and mostly masked except for when I was in front of an open window and the room was well ventilated, without anyone coughing actively in the room. (If anyone was in the room with me and coughing, especially the kids, I would mask even with the window open).

I did not get the cold that 8-10 (out of 16) people eventually got.

But…Scott did. And this time, he was mostly masked, but he still spent more time up close with kids who were coughing quite a bit. And this is where some of the dynamics of knowing WHAT people have is helpful. You can’t always know, but you can sometimes use the symptoms to figure out what people have.

For example, based on symptoms of the nibling who passed on germs to Scott around Thanksgiving, and Scott’s symptoms (instant, incredible chest cough but no runny nose, sore throat, fever, or aches) we had ultimately guessed that Scott had RSV. We then knew that the biggest risk was either droplets from coughing (especially because the volume of coughing), which could be reduced drastically by masking, or aerosols, which again would be helped by his masking and also ventilation, and in closed spaces, two-way masking (me masking).

For the Christmas germs, everyone seemed to have mild symptoms with congestion, runny noses, some coughs. But no fevers or aches and it seemed less severe. Given our recent experience with RSV, we narrowed it down to likely being a cold (rhinovirus), given again everyone testing repeatedly negative for COVID.

Given that, we knew the risk was going to be highest for us from droplets and fomites. So we again masked in shared spaces; Scott went to sleep in the guest bedroom as soon as he started getting symptoms; and we both did a lot of hand washing. Scott washed his hands before touching any of my things and regularly wiped down the kitchen. I tried not to go in the kitchen much (our main overlapping shared space), but also wash my hands after any time that I did. He didn’t have much of a cough and it was more controlled, so he would hold his cough until he could cover it with a mask or be in the room by himself. We also did our usual running of purifiers and opened windows and ran fans to increase ventilation to keep CO2 low.

And again? It worked. I did not get the cold, either from any of the ~8+ folks who did across the holiday period, or from Scott. Scott’s vitals all returned to normal at the five day mark, although we continued to mask in the car through day 7, to be more cautious (due to my personal situation).

So, infection is not inevitable, even in small houses and apartments.

Here’s what we’ve taken away from these experiences with more aerosol-based (RSV) transmission diseases and more droplet and fomite-based (cold) experiences:

  1. Two-way N95 masking works. Mask in the car, run the fan, keep the windows cracked, run purifiers at home, and ventilate spaces, but you still want two-way masking when something is aerosolized and you’re in the same spaces. This can prevent transmission.
  2. Keep distance when someone is coughing and sneezing (and if they have a cough or sneeze type illness, you want 6 foot distance even when they’re not actively coughing or sneezing, because they make droplets just from breathing and talking). The person who’s coughing and sneezing should mask, even inside, unless they are in their own room in private (and it’s not a shared room).Keep your air ventilated (if you haven’t, read my post about ventilation and using a Co2 monitor)Depending on the illness, to fully protect yourself you’ll need to commit to wearing a mask at all times indoors to protect yourself if the person who is sick is not masking. (Eg, Scott got a cold while mostly masked around heavily coughing niblings, but not throughout the whole house the whole day). With adults, the adults who are sick should definitely mask if they’re in shared spaces with other adults. (It’s harder with kids, and it should be a conversation depending on the age of the kids about them masking in shared spaces, such as if they want to play with Uncle Scott, or help them understand that someone may not want to play up close if they’re sick and coughing and not willing to mask. That’s fine, but that’s a choice they can make when kids are old enough to understand.)
  3. Have the infected person sleep in a different space (on the couch or in another room if you have a spare bedroom). If you have to share a room, both should mask.
  4. Use cleaning wipes to wipe down shared surfaces (e.g. fridge handles, microwave, counters, bathroom surfaces like the flush on the toilet or sink faucet, etc) and wash your hands after using these shared spaces every time. Fomites can last longer than you’d expect.
  5. Use metrics from your wearable devices (eg Apple Watch or Oura ring or similar) to track when your temperature, respiratory rate, heart rate, cough rate, etc. return to normal. That tied with symptom elimination can help you determine how long you’re likely most infectious for. The general estimates of contagiousness for each condition generally seem to be right (e.g., two weeks for an adult with RSV and 5-7 days for a cold) in our recent experiences. I would continue precautions for at least those minimum time frames, if you can.
  6. Yes, there’s a cost to these precautions, in terms of human contact. There was no hugging or hand holding or kissing or any touch contact during these time periods. I felt pretty lonely, especially because it was me we were trying to protect (because I am at high risk for bad outcomes due to immunosuppression right now), and I’m sure Scott also felt lonely and isolated. That part sucked, but we at least knew it was a fixed period of time, which helped.

What we’d do differently next time

Infection is not inevitable -how to reduce transmission of illness in your household (including COVID-19, RSV, flu, and the common cold), written by Dana M. Lewis from DIYPS.orgThis basically has been our plan for if either of us were to get COVID-19 (or the flu), and it’s good to know this plan works for a variety of conditions including RSV and the common cold. The main thing we would do differently in the future is that Scott should have masked the very first night he had symptoms of RSV, and he has decided that he’ll be masking any time he’s in the same room as someone who’s been coughing, as that’s considerably less annoying than being sick. (He really did not like the experience of having RSV.) I obviously did not get it from that first night when he first had the most minor symptoms of RSV, but that was probably the period of highest risk of transmission of either week, given the subsequent precautions we took after that.

Combined, everything we did worked, and we’ll do it again when we need to in the future, which should not be very often. We went five full years without either of us getting any type of infection (yay), and hopefully that continues from here on out. We’ll also continue to get regular COVID-19 boosters; annual flu shots; and other annual shots if/when they become available (e.g. when we reach the age, getting the RSV vaccine).

—

Remember, if you’re reading this in January 2025, RSV and flu levels are very high in the US right now, with COVID-19 expected to pick up again soon. It’s not too late to get your boosters and given the rates of respiratory illness, consider situational masking even if you don’t typically mask.

Best practices in communication related to writing a journal article and sharing it with co-authors

by Dana Lewis

I’ve been a single author, a lead author, a co-author, a corresponding author, AND a last author. Basically, I have written a lot of journal articles myself, solo / single, and with other people. One area in this process that I observe frequently gets overlooked is what happens during and after the submission process, as it relates to communicating about the article itself.

I’m not talking about disseminating the article to your target audience or the public, either (although that is important as well). I’m talking about making sure all authors know the article has been accepted; when it is live; have access to a copy of the article (!); etc.

Most people don’t know that by default, not all journals give all authors access to their own articles for free.

Here are some tips about the process of submitting and saving published articles that will help all authors – even solo authors – in the future.

Basically, help you help your future self! (As well as help your co-authors).

Journals typically only notify the lead/corresponding/submitting author about where the manuscript is in terms of revision, acceptance, and publication. That puts the responsibility on the lead/corresponding/submitting author to notify the full team of authors of where the article is in the process. Similarly, some journals will send a PDF/final copy of the proofed, final, version of record article to the lead author (not always, but usually), but that often does not go out to the full author team by default.

This means that it is the lead author’s responsibility to forward the copy of the final, PDF, proofed article to the entire authorship team so everyone has a copy.

(No, most of the time authors do not have free access to the journal they are submitting to. No, most authors do not have budget to make articles open access and free to all, which means unless they manage to snag and save this PDF article when it is sent to them at the time of publication, in the future, they may not have access to their very own article! Just because you, as the lead/corresponding author do have access, this does not mean everyone on your article team will.

I’m a good example of someone who authors frequently but is not at an institution and has zero access to any paywalled journals. If I’m not given a copy of my articles at the time of publication, I have to phone-a-friend (thanks, Liz Salmi, for being the go-to for me here) to help pull articles. There are things like S c i H u b, but they more often than not do not have super recent, fresh off the press articles. So yes, people like me exist on your authorship teams.)

Best practices for authors include:

  • Once you submit a manuscript, mark your file name (somehow) with “Submitted”. This way you know this is the version that was submitted. This is a useful step related to the below, we’ll come back to why we may want to use only the ‘submitted’ version.

    Example: “JournalAcronym-Article-Blah-Blah-SUBMITTED.docx”.

    Even as the non-lead author, when co-writing articles, as any type of author I prefer to have access to this submitted version. This way, I can see all incorporated edits and the ‘final’ version we submitted. There’s also cases where, see below, I need this for sharing it with other people.

  • Usually, the article goes through peer review and you get comments, so you make revisions and re-submit your article. Again, once submitted, make sure you’ve marked this as ‘revision’ somehow (usually people do) and that is was submitted.

    Example: “JournalAcronym-Article-Blah-Blah-SUBMITTED-R1.docx”.

    Again, best practice would be to send out this re-submitted revision version to all authors so everyone has it.

  • You may end up with multiple rounds of revisions and peer review (moving to R2, etc), or you may get an acceptance notice. Your article will then move to copyediting stage and you get proofs. It’s useful to save these for your own purpose, such as making sure that the edits you make are actually executed in the final article. This is less important for dissemination, though, although I do recommend giving all co-authors the ability to edit/review/proof and request changes.
  • Accepted, proofed, published! THIS is the step that I see most people miss, so pay attention.If you are the lead or solo author, you will probably get an email saying your article is now online, either online first or published. You may get an attachment PDF of your article. If not, you should be able to click on your access link and go to access the article online.

    IMPORTANT STEP HERE: go ahead and download the PDF of the article then. Right then, go ahead and save it.

    Example: “JournalAcronym-Article-Blah-Blah-Year.PDF”.

    (Why do you care about this if you are a solo author? Because the link may expire and you may lose access to this article. More on sharing your article below.)

  • Email your entire author team (if you’re not a solo author). Tell them the article was published; provide a link and/or the DOI link; and attach the PDF to the email so everyone on the team has a copy of the final article. Not all of your co-authors will work at an institution that has unlimited library access; if they do, that might change in the future. Give everyone a copy of the article to save for themselves.You can also remind everyone what the sharing permissions (or limitations) are for the article.

    For example, some articles are paywalled but authors have permission to store the final copy (PDF of the final version) on their own repository or not-for-profit website. For an example, see my research page of DIYPS.org/research – you’ll notice how sometimes I link to an “author copy” PDF, which is what this is – the final article PDF like you would get by accessing the paywalled journal.

    Other times, though, you are specifically not permitted to share the final/proofed/formatted copy. Instead, you’ll be allowed to share the “submitted” manuscript (usually prior to the revision stage). Remember how step 1 that I told you was to save a SUBMITTED copy? This is why! You can PDF this up; add a note to the top that references the final version of record (usually, journals give you recommended language for this) and a link/DOI link to it, and share away on your own site. Again, look at DIYPS.org/research and you’ll notice some of my “author copy” versions are these submitted versions rather than the final versions.

    You’ll also notice that sometimes I link to articles that are open access and then also have a link to a PDF author copy. This is in case something changes in the future with open access links breaking, the journal changing, etc. I have actually had free non-paywalled articles get turned into paywalled journal articles years later, which is why I do point to both places (the open access version and a back up author copy).

    Regardless of what the permissions are for sharing on your own website/repository/institutional repository: you as the author always have permission to give this PDF out when you are asked directly. For example, someone emails you and asks for a copy: you can email back and attach the PDF! This is true even if the permissioning for your own website is the submitted version (not the final version), you can still hand out the final, formatted, pretty PDF version when asked directly.

    As a related tip, this is a great way to disseminate your research and build relationships, so if someone does email you and ask for an author copy…please reply and send them a copy. (Saying this as someone without access to articles who sends requests to many authors to get access to their research, and I only get responses from 50% of authors. Sad panda.) Again, this is why it is helpful to get in the habit of saving your articles as you submit and have them published; it makes it easy to jump into the “Published copy” folder (or however you name it) and attach the PDF to the email and send it.

To recap, as a best practice, you should disseminate various versions of articles to your entire co-author team at the following points in time:

  • Original submission.

    Suggestion: Write an email, say you’ve successfully submitted, remind everyone which journal this was submitted to, and attached a copy of your “JournalAcronym-Article-Blah-Blah-SUBMITTED.docx”(If you end up getting a desk rejection, and you are re-submitting elsewhere, it is also nice to email co-authors and tell them so. You don’t necessarily need to send out a newly retitled version, unless there’s new changes to the submission, such as if you did go through a partial round of peer review before getting rejected and you are submitting the revised version to the new target journal.)

  • Revision submission.

    Suggestion: Write an email, say you’ve successfully submitted the revisions, remind everyone which journal this was submitted to, and attached a copy of your “JournalAcronym-Article-Blah-Blah-SUBMITTED-R1.docx” and the reviewer response document so everyone can see how edits/feedback were incorporated (or not).

  • Acceptance.

    Suggestion:

    A) Forward the email if it has the PDF attached to your full author team. Say congratulations; the article was accepted; and point out the article is attached as PDF.

    B) If you don’t have a PDF attachment in your email already, go to the online access link the journal gave you and save a copy of the PDF. Then, email the author team with the FYI that the article is live; provide the link to the online version; and attach the PDF directly to that email so everyone has a final version.

    Regardless of A or B, remind everyone what the permissions are for sharing to their own/institution repository (eg final PDF or use the submitted version, which you previously shared or could also re-share here).

Bonus tip:

Depending on the content of your article, you may also want to think about sending copies of the final PDF article to certain people who are not co-authors with you.

For example, if you are heavily citing someone’s work or talking about their work in a constructive way – you could email them and give them a heads up and provide a copy of the article. It’s a great way to contribute to your relationship (if you have an existing relationship) and/or foster a relationship. Remember that many people will have Google Scholar Alerts or similar with their name and/or citation alerts from various services, so people are likely to see when you talk about them or their work or are heavily citing their work. Again, some of those people may not have access to your article and may reach out to ask for an article; you can (and should) send them a copy! (And again, consider thinking about it as a relationship building opportunity rather than a transactional thing related to this single article.)

I would particularly flag this as something to pay attention to and do if you are someone working in the space of patient engagement in healthcare. For example, if you write an article and mention them or their body of work by name, it would be courteous to email them, let them know about the article, and send them a PDF.

Otherwise, I can speak from the experience of being talked about as a patient like I’m an ant under the microscope where someone cites an article where my work is mentioned; talks about me by name and references my perspective; and I get a notification about this article….but I can’t access it because it’s in a paywalled journal. Awkward, and a little weird in some cases when the very subject of the article(s) are about patient engagement and involving patients in research. Remember, research involvement should include all stages from design, planning, doing the research, and then disseminating the research. So this meta point is that if there is scholarly literature of any kind (whether original research articles or reviews, commentaries, letters in response to other articles, etc) talking about specific patients and their bodies of work – best practice should be to email them and send a copy of the article. Again, think less transactional and more about relationships – it will likely give you benefit in the long run! Plus, less awkward, a short-term benefit.

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best practices for communicating with co-authors about published articles, by Dana M. Lewis from DIYPS.orgAs an example for how I like to disseminate my articles personally, every time a journal article is published and I have access to it, I updated DIYPS.org/research with the title, journal, a DOI link (to help people find it online and/or cite it), and a link to the open access version if available and if not, an author copy PDF of the final or submitted version. So, if you’re ever looking for any of my articles, you can head there (DIYPS.org/research) first and grab copies any time!

If you are looking for a particular article and can’t find it or it’s not listed there yet (e.g. likely because it just came out and I haven’t been sent my own copy by my co-authors yet…), you can always email me directly (Dana@OpenAPS.org) and I’m more than happy to send you a copy of whatever version I have available and/or the final PDF once I have access to it.

Power outage, winter heat, battery, and other tools and solutions

by Dana Lewis

We recently had a multi-day power outage. Ugh. It luckily wasn’t so cold we needed to go find a hotel to stay in (or stay overnight with family elsewhere), but it was chilly, inconvenient, and annoying. We have done a lot of preparation for power outages, though, because we often get a handful a year during really windy storms around here. We found ourselves pleasantly surprised with the utility of a couple of things and wanted to share with other folks. Most of these serve two purposes, but work really well in a power outage situation. I’ll describe what we got them for originally and how we use them in a power outage. (PS – we bought all of these on Amazon, and I’m sharing these links as Amazon affiliate links).

Lights
Sure, your phone has a flashlight, but if you’re spending hours without power, it makes a surprising psychological difference to have at least a little light in the room(s) you’re spending time in.

Our first go-to is the fact that our bigger batteries (more details on them below) have decent lights that can be turned on. Point it toward a wall or set it upright and point to the ceiling, and you have enough light to see the room by. And your brain is going to be less stressed. Win.

The other lights we have had for years are high powered, rechargeable LED waist or head lamps. I *love* these, which I got for ultrarunning. The ones we got come in a pack of two, and what I do is deconstruct them and link the two bands together, essentially making one band that has both lights and backlights on them. I point one toward the front, and one to the back. The battery pack and red light part that usually goes on the back is facing the sides. These are really bright, and good enough to wear around my waist when running or walking in the dark, and I don’t use a headlamp with them. So that’s why we had them, and they’re usually the second light source we go to in a power outage. Scott will wear one as a waist lamp or pendant lamp as he moves around. The other thing we realized this time is that you can hang it over a standing lamp and the light reflects off the wall really well (and at height), which is a nice complement to any other lower light sources you have.

Some of our small battery power banks we use for charging phones or little electronic devices have lights, too, that are more similar to your phone’s flashlight. I wouldn’t buy these for the sake of these lights, but it’s handy to know if any of your power banks have lights so you can use them in a power outage, too.

The last set of lights I’ll mention are new in our collection this year. We got them for our pantry, which doesn’t have lights. These are motion sensor lights that trigger when we open our pantry door and stand there looking in the pantry. They flip off after a few seconds in auto mode. They are rechargeable, but we found that they lasted for months on auto without needing recharging. Once we hit the power outage, Scott pulled one out of the pantry and realized it magnetically attaches to the light fixture in our bathroom. There’s four brightness settings, and you can also switch it to stay on. So if you are in the bathroom and using that room, you can switch it to “on” and it’s a great light source, then switch it back off (to motion sensor mode) when you’re done in there. We thought they were so useful that we went ahead and ordered a second set to use in the house and leverage for a future power outage.

Heat

We were lucky this time that it was only 40-50F for most of our power outage. That being said, we did get chilly and it got chillier every day. I tend to run cold anyway and use a heating pad at the foot of my bed normally, so without that…brrrr. We’ve gotten all of these things over the years to make hiking and walking and skiing in the cold and wet more comfy, so like the lights these all have primary uses beyond power outages, but they doubled up nicely to serve us during the outage, too.

(By the way, heating pads have changed since we were kids. I resisted getting another or a new heating pad for about a year. Because the heating pad I had was ~10-15 years old and one of those old style plasticky ones with a blue scratchy fabric cover over it. I hated the plastic. Then I finally looked online and was shocked that they come in different colors – I could get purple! – and sizes and they aren’t plastic anymore. Woohoo! So, I now own multiple heating pads in different colors and sizes. Mentioning that in case anyone else has a historical heating pad and doesn’t know there are better options now! The one I got isn’t listed anymore, but this one looks similar, other than color choice (which might be under a different listing).)

A heated vest is one of the things Scott used the most. We originally chose this one (there are a ton of options from different brands and different styles) because we wanted one that could heat the back as well as the front. This one you can turn on each of those independently, and there are also three different levels of heat. If you’re chilly but don’t want to be bundled up inside in a coat with sleeves, this is a great choice. (I wear it a lot on wet days for outside activities, putting it on under a rain jacket).

The other thing we use a lot and used in the outage to stay warm is fingerless heated gloves. We have big, full finger heated gloves, too, but those are more like bulky ski gloves and don’t work well for me (because I have especially small hands). In fact, we have two sets of full finger heated gloves, because last year we bought a small pair for me to use for cross country skiing…and they were way too big for me. Scott adopted that pair, and we found another pair that was a smidgen smaller. They’re still bulky and make it hard to do anything, but when hiking or skiing in the rain, they’re perfect. Otherwise, when on walks where I want to use my phone or at home in power outages, I like the new fingerless heated gloves we got. Again, if you have small hands like I do, measure your hand and check the measurements on heated gloves (fingerless or full finger) when you order, most of the “small” to “small/medium” or “one size fits all” are huge on me. The ones I got are a little big through the palm and wide on the fingers, but because they’re fingerless, they’re still functional. I’ve actually surprised myself with how often I’ve been wearing them on slightly wet days when heading out for a walk and are on the list of “I can’t believe it took me so long to discover/figure out I should buy these”, just like the modern era heating pads. If you get cold at work and your hands get really cold, these are the kind I would look for. But I also highly recommend them for outdoor activities, too.

Food prep and heating

Speaking of heat, let’s talk food. After multiple days, even if you have available ready to eat food, it gets old. We bought a 12 volt DC hot plate in a zipper bag (check the picture if that description doesn’t make sense) to use on long car trips and for after big hikes and ultramarathons, when I wanted to be able to eat and refuel on a long drive home. It works awesome in the car for things like a frozen dinner or a shallow tupperware container of stew or chili (check the size of your tupperware to make sure it fits; shallow square ones work best in the one I got); but also warming up savory biscuits or sandwiches or scones or leftover pizza. Pretty versatile, and easy to clean even when using between a gluten eater (Scott) and someone with celiac. This is also one of our go-to’s for if we have an extended power outage and want hot food if there’s nothing in the area and we don’t want to or can’t drive to an area with power. Ready to eat canned soup or stew into a tupperware into the hot plate container, and like light in the room…it’s just going to make everything else feel a little less stressful than it would be otherwise.

Battery and batteries and batteries galore

We have two large (250Wh+) power stations, and lots of smaller (5-30Ah / 20-100Wh) power banks. One of the power stations has a working AC inverter, allowing us to power a heating pad for a few hours, recharge the more portable power banks, or keep all of our electronics powered/charging all night. The other used to have an AC inverter, but its cooling fan sounded like a helicopter, so we weren’t too sad when its AC outlet broke. Now we just use its built-in light, its 12V DC auto outlet (e.g. for the hot plate), its USB ports for charging electronics, lights, or smaller power banks, and/or its 12V DC barrel plug outlet to charge the power station whose inverter still works.

The smaller “phone charger” power banks are pretty much interchangeable with the ones you probably already have. Some of them (like the Anker one) support wireless phone charging, and serve nicely as a plugged-in wireless charger until you want to unplug them and take them with you. A couple of the larger ones (like this one, which we recently got) support USB-C PD at high enough wattage to keep my laptop’s battery from draining while I use it, or even (slowly) charge it.

Keeping batteries topped off is a bit of a chore during a long outage. What we found works best with two power stations is:

  • Keep a 12VDC to AC inverter in the car, and use it to recharge one of the large power stations at a time (via its AC to 15VDC adapter), and any smaller power banks that you’ve used up (via USB). (You probably don’t want to try to plug in multiple 15VDC adapters at once, or you risk blowing your car’s 12VDC fuse/breaker.)
  • Keep the other power station in the house for AC needs, to keep other electronics, lights, and small power banks topped off. When its battery gets low, swap the two power stations.

If you live in a sunnier climate, these kinds of power stations can be recharged via solar panels, but for a Western Washington November windstorm, we didn’t even bother getting our solar panel out of our camping bag. If you plan to use PV, you might want to buy an integrated kit to ensure optimal compatibility between the PV panel and the power station’s charge controller.

Outside of a power outage situation, Scott mostly uses these power stations as range extenders for his e-bike. He has two e-bike batteries, so can take both of those and a power station in the saddle-bags and charge one battery off the power station while using the other one. On a long ride without too much pedal assist, he can fully drain a power station to get an extra ~15mi of range.

Ice and keeping things cold (and safe)

While we are talking about power outages, we’ll share some of what we found works for us in terms of managing our fridge and freezer, too. This is less on the “here’s things you can buy” list and more “here’s information your brain can consider in the future” if you have an extended power outage.

Before the power goes out, we make sure we have lots of frozen ice packs (and/or ice) scattered around your freezer.

When the power goes out:

  • Eat ice cream until you’re full. The ice cream will be a lot tastier before it melts.
  • Take a hot shower: the hot water won’t stay hot for more than a few hours.
  • Put a few of the ice packs in the fridge to keep it cold.
  • Leave the fridge door mostly shut. You can quickly grab things out as needed: just don’t stand there with it open deciding what you want to eat. The objective is to keep the temperature from rising too much at once, as it takes a lot longer than normal to cool back down just from ice packs.
  • When you’re tired of ice cream and get hungry, eat leftovers, etc. out of the fridge (cold, or heated up on the 12VDC hot plate).

If the power is still going to be out by the time your ice packs melt:

  • Drive to a nearby area that still has power, and buy a few bags of ice from a convenience store, Walmart, etc.
  • Pour the bagged ice out into gallon ziploc bags: the bags it comes in will leak when it starts to melt.
  • Put at least two gallons of ice in the fridge and two gallons in the freezer.

When the power comes back on:

  • Check that you still have un-melted ice in both the fridge and freezer. If not, your remaining food may not be safe. (40F is when bacteria can start to grow, which is why if you’re in doubt, you should toss it out. But if you keep frozen packs frozen… you may not have to toss everything out.)

Electric vehicles as a power assist

We have an EV (a used 2018 Tesla Model 3), and it worked quite well. It can’t power the whole house like an F150 Lightning or a Cybertruck, but with a 12V to AC inverter, can recharge power banks of all sizes, without having to worry about running the battery down or idling the engine to avoid it. The battery lasts for weeks if we don’t drive it, or longer if we leave Sentry off. If we go anywhere, we can charge at our destination or Supercharge on the way. And even with 500k people without power, the nearest powered Supercharger was only a 10m drive from here.

What we wished we had (and didn’t, yet)

The main thing we were missing was having fast enough Internet. We had cell service, so we could hotspot with our phones, but during the day when everyone’s doing that it’s unusably slow for working from the laptop. Zoom still worked via phone, but in order to get any “real work” done, we wanted “real” Internet. This time around, we got that (and hot showers) by driving up to Scott’s parents’ house, where they never lost power. But to be ready for next time, and for back country hikes and long road trips, we ordered a Starlink Mini. It’s a bit pricier than a regular Starlink dish, but is only about the size of a laptop, works off a power bank, and can be easily used in the car. We got the $50/mo 50GB plan, which we can pause and reactivate at any time, paying $50 only for the months we want to use it. We’ll likely post an update later once we use it a bit. (If you want a Starlink referral code for either a regular Starlink or a Starlink mini, this referral code gives you one month of free service.)

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TLDR: it’s nice when you have things that can pull double duty in regular life and in power outages. Our list includes a lot of lights; a lot of heating options; batteries galore; and strategies for keeping our food cold or hot as desired.

If you have any favorite double duty tools or solutions we should get, that you love for power outages and other use cases, please comment and describe them so we – and everyone else – can check them out!

Multi-day power outage: batteries, power sources, heating, and other things that worked well

Assessing the Impact of Diabetes on Gastrointestinal Symptom Severity in Exocrine Pancreatic Insufficiency (EPI/PEI): A Diabetes Subgroup Analysis of EPI/PEI-SS Scores – Poster at #ADA2024

by Dana Lewis

Last year, I recognized that there was a need to improve the documentation of symptoms of exocrine pancreatic insufficiency (known as EPI or PEI). There is no standardized way to discuss symptoms with doctors, and this influences whether or not people get the right amount of enzymes (pancreatic enzyme replacement therapy; PERT) to treat EPI and eliminate symptoms completely. It can be done, but like insulin, it requires matching PERT to the amount of food you’re consuming. I also began observing that EPI is underscreened and underdiagnosed, whether that’s in the general population or in people with diabetes. I thought that if we could create a list of common EPI symptoms and a standardized scale to rate them, this might help address some of these challenges.

I developed this scale to address these needs. It is called the “Exocrine Pancreatic Insufficiency Symptom Score” or “EPI/PEI-SS” for short.

I had a handful of people with and without EPI help me test the scale last year, and then I opened up a survey to the entire world and asked people to share their experiences with GI-related symptoms. I specifically sought people with EPI diagnoses as well as people who don’t have EPI, so that we could compare the symptom burden and experiences to people without EPI. (Thank you to everyone who contributed their data to this survey!)

After the first three weeks, I started analyzing the first set of data. While doing that, I realized that (both because of my network of people with diabetes and because I also posted in at least one diabetes-specific group), I had a large sub-group of people with diabetes who had contributed to the survey, and I was able to do a full subgroup analyses to assess whether having diabetes seemed to correlate with a different symptom experience of EPI or not.

Here’s what I found, and what my poster is about (you can view my poster as a PDF here), presented at ADA Scientific Sessions 2024 (#ADA2024):

1985-LB at #ADA2024, “Assessing the Impact of Diabetes on Gastrointestinal Symptom Severity in Exocrine Pancreatic Insufficiency (EPI/PEI): A Diabetes Subgroup Analysis of EPI/PEI-SS Scores”

Exocrine pancreatic insufficiency has a high symptom burden and is present in as many as 3 of 10 people with diabetes. (See my systematic review from last year here). To help improve conversations about symptoms of EPI, which can then be used to improve screening, diagnosis, and treatment success with EPI, I created the Exocrine Pancreatic Insufficiency Symptom Score (EPI/PEI-SS), which consists of 15 individual symptoms that people separately rate the frequency (0-5) and severity (0-3) for which they experience those symptoms, if at all. The frequency and severity get multiplied for an individual symptom score (0-15 possible) and these get added up for a total EPI/PEI-SS score (0-225 possible, because 15 symptoms times 15 possible points per symptom is 225).

I conducted a real-world study of the EPI/PEI-SS in the general population to assess the gastrointestinal symptom burden in individuals with (n=155) and without (n=169) EPI. Because there was a large cohort of PWD within these groups, I separately analyzed them to evaluate whether diabetes contributes to a difference in EPI/PEI-SS score.

Methods:

I calculated EPI/PEI-SS scores for all survey participants. Previously, I had analyzed the differences of people with and without EPI overall. For this sub-analysis, I analyzed and compared between PWD (n=118 total), with EPI (T1D: n=14; T2D: n=20) or without EPI (T1D: n=78; T2D: n=6), and people without diabetes (n=206 total) with and without EPI.

I also looked at sub-groups within the non-EPI cohorts and broke them into two groups to see whether other GI conditions contributed to a higher EPI/PEI-SS score and whether we could distinguish EPI from other GI and non-GI conditions.

Results:

People with EPI have a much higher symptom burden than people without EPI. This can be assessed by looking at the statistically significant higher mean EPI/PEI-SS score as well as the average number of symptoms; the average severity score of individual symptoms; and the average frequency score of individual symptoms.

This remains true irrespective of diabetes. In other words, diabetes does not appear to influence any of these metrics.

People with diabetes with EPI had statistically significant higher mean EPI/PEI-SS scores (102.62 out of 225, SD: 52.46) than did people with diabetes without EPI (33.64, SD: 30.38), irrespective of presence of other GI conditions (all group comparisons p<0.001). As you can see below, that is the same pattern we see in people without diabetes. And the stats confirm what you can see: there is no significant difference overall or in any of the subgroups between people with and without diabetes.

Box plot showing EPI/PEI-SS scores for people with and without diabetes, and with and without EPI or other GI conditions. The scores are higher in people with EPI regardless of whether they have diabetes. The plot makes it clear that the scores are distinct between the groups with and without EPI, even when the people without EPI have other GI conditions. This suggests the EPI/PEI-SS can be useful in distinguishing between EPI and other conditions that may cause GI symptoms, and that the EPI/PEI-SS could be a useful screening tool to help identify people who need screening for EPI.

T1D and T2D subgroups were similar
(but because the T2D cohort is small, I did not break them out separately in this graph).

For example, people with diabetes with EPI had an average of 12.59 (out of 15) symptoms, with an average frequency score of 3.06 and average severity score of 1.79, and an average individual symptom score of 5.48. This is a pretty clear contrast to people with diabetes without EPI who had had an average of 7.36 symptoms, with an average frequency score of 1.4 and average severity score of 0.8, and an average individual symptom score of 1.12. All comparisons are statistically significant (p<0.001).

A table comparing the average number of symptoms, frequency, severity, and individual symptom scores between people with diabetes with and without exocrine pancreatic insufficiency (EPI). People with EPI have more symptoms and higher frequency and severity than without EPI: regardless of diabetes.

Conclusion 

  • EPI has a high symptom burden, irrespective of diabetes.
  • High scores using the EPI/PEI-SS among people with diabetes can distinguish between EPI and other GI conditions.
  • The EPI/PEI-SS should be further studied as a possible screening method for EPI and assessed as a tool to aid people with EPI in tracking changes to EPI symptoms over time based on PERT titration.

What does this mean if you are a healthcare provider? What actionable information does this give you?

If you’re a healthcare provider, you should be aware that people with diabetes may be more likely to have EPI – rather than celiac or gastroparesis (source) – if they mention having GI symptoms. This means you should incorporate fecal elastase screening into your care plans to help further evaluate GI-related symptoms.

If you want to further improve your pre-test probability of the elastase testing, you can use the EPI/PEI-SS with your patients to assess the severity and frequency of their GI-related symptoms. I will explain the cutoff and AUC numbers we calculated, but first understand the caveat that these were calculated in the initial real-world study that included people with EPI who are already treating with PERT; thus these numbers might change a little when we repeat this study and evaluate it in people with untreated EPI. (However, I actually predict the mean score to go up in an undiagnosed population, because scores should go down with treatment.) But that different population study may change these exact cutoff and sensitivity specificity numbers, which is why I’m giving this caveat. That being said: the AUC was 0.85 which means a higher EPI/PEI-SS is pretty good for differentiating between EPI and not having EPI. (In the diabetes sub-population specifically, I calculated a suggested cutoff of 59 (out of 225) with a sensitivity of 0.81 and specificity of 0.75. This means we estimate that if people are bringing up GI symptoms to you and you have them take the EPI/PEI-SS and their score is greater than or equal to 59, you would expect that out of 100 people that 81 with EPI would be identified (and 75 of 100 people without EPI would also correctly be identified via scores lower than 59). That doesn’t mean that people with EPI can’t have a lower score; or that people with a higher score do have EPI; but it does mean that the chances of having fecal elastase <=200 ug/g is a lot more likely in those with higher EPI/PEI-SS scores.

In addition to the cutoff score, there is a notable difference in people with diabetes and EPI compared to people with diabetes without EPI in their top individual symptom scores (representing symptom burden based on frequency and severity). For example, the top 3 symptoms of those with EPI and diabetes include avoiding certain food/groups; urgent bowel movements; and avoiding eating large meals. People without EPI and diabetes also score “Avoid certain food/groups” as their top score, but the score is markedly different: the mean score of 8.94 for people with EPI as compared to 3.49 for people without EPI. In fact, the mean score on the lowest individual symptom is higher for people with EPI than the highest individual symptom score for people without EPI.

QR code for EPI/PEI-SS - takes you to https://bit.ly/EPI-PEI-SS-WebHow do you have people take the EPI/PEI-SS? You can pull this link up (https://bit.ly/EPI-PEI-SS-Web), give this link to them and ask them to take it on their phone, or save this QR code and give it to them to take later. The link (and the QR code) go to a free web-based version of the EPI/PEI-SS that will calculate the total EPI/PEI-SS score, and you can use it for shared decision making processes about whether this person would benefit from a fecal elastase test or other follow up screening for EPI. Note that the EPI/PEI-SS does not collect any identifiable information and is fully anonymous.

(Bonus: people who use this tool can opt to contribute their anonymized symptom and score data for an ongoing observational study.)

If you have feedback about whether the EPI/PEI-SS was helpful – or not – in your care of people with diabetes; or if you want to discuss collaborating on some prospective studies to evaluate EPI/PEI-SS in comparison to fecal elastase screening, please reach out anytime to Dana@OpenAPS.org. 

What does this mean if you are a patient (person with diabetes)? What actionable information does this give you?

If you don’t have GI symptoms that bother you, you don’t necessarily need to take action. (Just put a note in your brain that EPI is more likely than celiac or gastroparesis in people with diabetes so if you or a friend with diabetes have GI symptoms in the future, you can make sure you are assessed for EPI.) You can also choose to take the EPI/PEI-SS regardless, and also opt in to donate your data.

If you do have GI symptoms that are annoying, you may want to take the EPI/PEI-SS to help you evaluate the frequency and severity of your GI symptoms. You can take it for free and anonymously – no identifiable information is needed to access the tool. It will generate the EPI/PEI-SS score for you.

Based on the score, you may want to ask your doctor (which could be the doctor that treats your diabetes, or a primary/general care provider, or a gastroenterologist – whoever you seek routine care from or have an appointment from next) about your symptoms; share the EPI/PEI-SS score; and explain that you think you may warrant screening for EPI.

(You can also choose to contribute your anonymous symptom data to a research dataset, to help us improve the EPI/PEI-SS and help us figure out how to help improve screening and diagnosis and treatment of EPI. Remember, this tool will not ask you for any identifying information. This is 100% optional and you can opt out of doing so if you do not prefer to contribute to research, while still using the tool.)

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You can see a pre-print version of the diabetes sub-study here or pre-print of the general population data here.

If you’re looking for more personal experiences about living with EPI, check out DIYPS.org/EPI, and also for people with EPI looking to improve their dosing with pancreatic enzyme replacement therapy – you may want to check out PERT Pilot (a free iOS app to record enzyme dosing).

Researchers & clinicians, if you’re interested in collaborating on studies in EPI (in diabetes, or more broadly on EPI), whether specifically on EPI/PEI-SS or broader EPI topics, please reach out! My email is Dana@OpenAPS.org

Pain and translation and using AI to improve healthcare at an individual level

by Dana Lewis

I think differently from most people. Sometimes, this is a strength; and sometimes this is a challenge. This is noticeable when I approach healthcare encounters in particular: the way I perceive signals from my body is different from a typical person. I didn’t know this for the longest time, but it’s something I have been becoming more aware of over the years.

The most noticeable incident that brought me to this realization involved when I pitched head first off a mountain trail in New Zealand over five years ago. I remember yelling – in flight – help, I broke my ankle, help. When I had arrested my fall, clung on, and then the human daisy chain was pulling me back up onto the trail, I yelped and stopped because I could not use my right ankle to help me climb up the trail. I had to reposition my knee to help move me up. When we got up to the trail and had me sitting on a rock, resting, I felt a wave of nausea crest over me. People suggested that it was dehydration and I should drink. I didn’t feel dehydrated, but ok. Then because I was able to gently rest my foot on the ground at a normal perpendicular angle, the trail guides hypothesized that it was not broken, just sprained. It wasn’t swollen enough to look like a fracture, either. I felt like it hurt really bad, worse than I’d ever hurt an ankle before and it didn’t feel like a sprain, but I had never broken a bone before so maybe it was the trauma of the incident contributing to how I was feeling. We taped it and I tried walking. Nope. Too-strong pain. We made a new goal of having me use poles as crutches to get me to a nearby stream a half mile a way, to try to ice my ankle. Nope, could not use poles as crutches, even partial weight bearing was undoable. I ended up doing a mix of hopping, holding on to Scott and one of the guides. That got exhausting on my other leg pretty quickly, so I also got down on all fours (with my right knee on the ground but lifting my foot and ankle in the air behind me) to crawl some. Eventually, we realized I wasn’t going to be able to make it to the stream and the trail guides decided to call for a helicopter evacuation. The medics, too, when they arrived via helicopter thought it likely wasn’t broken. I got flown to an ER and taken to X-Ray. When the technician came out, I asked her if she saw anything obvious and whether it looked broken or not. She laughed and said oh yes, there’s a break. When the ER doc came in to talk to me he said “you must have a really high pain tolerance” and I said “oh really? So it’s definitely broken?” and he looked at me like I was crazy, saying “it’s broken in 3 different places”. (And then he gave me extra pain meds before setting my ankle and putting the cast on to compensate for the fact that I have high pain tolerance and/or don’t communicate pain levels in quite the typical way.)

A week later, when I was trying not to fall on my broken ankle and broke my toe, I knew instantly that I had broken my toe, both by the pain and the nausea that followed. Years later when I smashed another toe on another chair, I again knew that my toe was broken because of the pain + following wave of nausea. Nausea, for me, is apparently a response to very high level pain. And this is something I’ve carried forward to help me identify and communicate when my pain levels are significant, because otherwise my pain tolerance is such that I don’t feel like I’m taken seriously because my pain scale is so different from other people’s pain scales.

Flash forward to the last few weeks. I have an autoimmune disease causing issues with multiple areas of my body. I have some progressive slight muscle weakness that began to concern me, especially as it spread to multiple limbs and areas of my body. This was followed with pain in different parts of my spine which has escalated. Last weekend, riding in the car, I started to get nauseous from the pain and had to take anti-nausea medicine (which thankfully helped) as well as pain medicine (OTC, and thankfully it also helped lower it down to manageable levels). This has happened several other times.

Some of the symptoms are concerning to my healthcare provider and she agreed I should probably have a MRI and a consult from neurology. Sadly, the first available new patient appointment with the neurologist I was assigned to was in late September. Gulp. I was admittedly nervous about my symptom progression, my pain levels (intermittent as they are), and how bad things might get if we are not able to take any action between now and September. I also, admittedly, was not quite sure how I would cope with the level of pain I have been experiencing at those peak moments that cause nausea.

I had last spoken to my provider a week prior, before the spine pain started. I reached out to give her an update, confirm that my specialist appointment was not until September, and express my concern about the progression and timeline. She too was concerned and I ended up going in for imaging sooner.

Over the last week, because I’ve been having these progressive symptoms, I used Katie McCurdy’s free templates from Pictal Health to help visualize and show the progression of symptoms over time. I wasn’t planning on sending my visuals to my doctor, but it helped me concretely articulate my symptoms and confirm that I was including everything that I thought was meaningful for my healthcare providers to know. I also shared them with Scott to confirm he didn’t think I had missed anything. The icons in some cases were helpful but in other cases didn’t quite match how I was experiencing pain and I modified them somewhat to better match how I saw the pain I was experiencing.

(PS – check out Katie’s templates here, you can make a copy in Google Drive and use them yourself!)

As I spoke with the nurse who was recording my information at intake for imaging, she asked me to characterize the pain. I did and explained that it was probably usually a 7/10 then but periodically gets stronger to the point of causing nausea, which for me is a broken bone pain-level response. She asked me to characterize the pain – was it burning, tingling…? None of the words she said matched how it feels. It’s strong pain; it sometimes gets worse. But it’s not any of the words she mentioned.

When the nurse asked if it was “sharp”, Scott spoke up and explained the icon that I had used on my visual, saying maybe it was “sharp” pain. I thought about it and agreed that it was probably the closest word (at least, it wasn’t a hard no like the words burning, tingling, etc. were), and the nurse wrote it down. That became the word I was able to use as the closest approximation to how the pain felt, but again with the emphasis of it periodically reaching nausea-inducing levels equivalent to broken bone pain, because I felt saying “sharp” pain alone did not characterize it fully.

This, then, is one of the areas where I feel that artificial intelligence (AI) gives me a huge helping hand. I often will start working with an LLM (a large language model) and describing symptoms. Sometimes I give it a persona to respond as (different healthcare provider roles); sometimes I clarify my role as a patient or sometimes as a similar provider expert role. I use different words and phrases in different questions and follow ups; I then study the language it uses in response.

If you’re not familiar with LLMs, you should know it is not human intelligence; there is no brain that “knows things”. It’s not an encyclopedia. It’s a tool that’s been trained on a bajillion words, and it learns patterns of words as a result, and records “weights” that are basically cues about how those patterns of words relate to each other. When you ask it a question, it’s basically autocompleting the next word based on the likelihood of it being the next word in a similar pattern. It can therefore be wildly wrong; it can also still be wildly useful in a lot of ways, including this context.

What I often do in these situations is not looking for factual information. Again, it’s not an encyclopedia. But I myself am observing the LLM in using a pattern of words so that I am in turn building my own set of “weights” – meaning, building an understanding of the patterns of words it uses – to figure out a general outline of what is commonly known by doctors and medical literature; the common terminology that is being used likely by doctors to intake and output recommendations; and basically build a list of things that do and do not match my scenario or symptoms or words, or whatever it is I am seeking to learn about.

I can then learn (from the LLM as well as in person clinical encounters) that doctors and other providers typically ask about burning, tingling, etc and can make it clear that none of those words match at all. I can then accept from them (or Scott, or use a word I learned from an LLM) an alternative suggestion where I’m not quite sure if it’s a perfect match, but it’s not absolutely wrong and therefore is ok to use to describe somewhat of the sensation I am experiencing.

The LLM and AI, basically, have become a translator for me. Again, notice that I’m not asking it to describe my pain for me; it would make up words based on patterns that have nothing to do with me. But when I observe the words it uses I can then use my own experience to rule things in/out and decide what best fits and whether and when to use any of those, if they are appropriate.

Often, I can do this in advance of a live healthcare encounter. And that’s really helpful because it makes me a better historian (to use clinical terms, meaning I’m able to report the symptoms and chronology and characterization more succinctly without them having to play 20 questions to draw it out of me); and it saves me and the clinicians time for being able to move on to other things.

At this imaging appointment, this was incredibly helpful. I had the necessary imaging and had the results at my fingertips and was able to begin exploring and discussing the raw data with my LLM. When I then spoke with the clinician, I was able to better characterize my symptoms in context of the imaging results and ask questions that I felt were more aligned with what I was experiencing, and it was useful for a more efficient but effective conversation with the clinician about what our working hypothesis was; what next short-term and long-term pathways looked like; etc.

This is often how I use LLMs overall. If you ask an LLM if it knows who Dana Lewis is, it “does” know. It’ll tell you things about me that are mostly correct. If you ask it to write a bio about me, it will solidly make up ⅓ of it that is fully inaccurate. Again, remember it is not an encyclopedia and does not “know things”. When you remember that the LLM is autocompleting words based on the likelihood that they match the previous words – and think about how much information is on the internet and how many weights (patterns of words) it’s been able to build about a topic – you can then get a better spidey-sense about when things are slightly more or less accurate at a general level. I have actually used part of a LLM-written bio, but not by asking it to write a bio. That doesn’t work because of made up facts. I have instead asked it to describe my work, and it does a pretty decent job. This is due to the number of articles I have written and authored; the number of articles describing my work; and the number of bios I’ve actually written and posted online for conferences and such. So it has a lot of “weights” probably tied to the types of things I work on, and having it describe the type of work I do or am known for gets pretty accurate results, because it’s writing in a general high level without enough detail to get anything “wrong” like a fact about an award, etc.

This is how I recommend others use LLMs, too, especially those of us as patients or working in healthcare. LLMs pattern match on words in their training; and they output likely patterns of words. We in turn as humans can observe and learn from the patterns, while recognizing these are PATTERNS of connected words that can in fact be wrong. Systemic bias is baked into human behavior and medical literature, and this then has been pattern-matched by the LLM. (Note I didn’t say “learned”; but they’ve created weights based on the patterns they observe over and over again). You can’t necessarily course-correct the LLM (it’ll pretend to apologize and maybe for a short while adjust it’s word patterns but in a new chat it’s prone to make the same mistakes because the training has not been updated based on your feedback, so it reverts to using the ‘weights’ (patterns) it was trained on); instead, we need to create more of the correct/right information and have it voluminously available for LLMs to train on in the future. At an individual level then, we can let go of the obvious not-right things it’s saying and focus on what we can benefit from in the patterns of words it gives us.

And for people like me, with a high (or different type of) pain tolerance and a different vocabulary for what my body is feeling like, this has become a critical tool in my toolbox for optimizing my healthcare encounters. Do I have to do this to get adequate care? No. But I’m an optimizer, and I want to give the best inputs to the healthcare system (providers and my medical records) in order to increase my chances of getting the best possible outputs from the healthcare system to help me maintain and improve and save my health when these things are needed.

TLDR: LLMs can be powerful tools in the hands of patients, including for real-time or ahead-of-time translation and creating shared, understandable language for improving communication between patients and providers. Just as you shouldn’t tell a patient not to use Dr. Google, you should similarly avoid falling into the trap of telling a patient not to use LLMs because they’re “wrong”. Being wrong in some cases and some ways does not mean LLMs are useless or should not be used by patients. Each of these tools has limitations but a lot of upside and benefits; restricting patients or trying to limit use of tools is like limiting the use of other accessibility tools. I spotted a quote from Dr. Wes Ely that is relevant: “Maleficence can be created with beneficent intent”. In simple words, he is pointing out that harm can happen even with good intent.

Don’t do harm by restricting or recommending avoiding tools like LLMs.

Being a raccoon and living with chronic disease

by Dana Lewis

Being a raccoon loading a dishwasher is a really useful analogy for figuring out: what you want to spend a lot of effort and precision on, where you can lower your effort and precision and still obtain reasonable outcomes, or where you can allow someone else to step in and help you when you don’t care how as long as the job gets done.

Huh? Raccoons?!

A few years ago Scott and I spotted a meme/joke going around that in every relationship there is a person who loads the dishwasher precisely (usually “stacks the dishwasher like a Scandinavian architect”) and one who loads the dishwasher like a “raccoon on meth” or a “rabid raccoon” or similar.

Our relationship and personality with dishwasher loading isn’t as opposite on the spectrum as that analogy suggests. However, Scott has a strong preference for how the dishwasher should be loaded, along with a high level of precision in achieving it. I have a high level of precision, but very low preference for how it gets done. Thus, we have evolved our strategy where I put things in and he re-arranges them. If I put things in with a high amount of effort and a high level of precision? He would rearrange them ANYWAY. So there is no point in me also spending high levels of effort to apply a first style of precision when that work gets undone. It is more efficient for me to put things in, and then he re-organizes as he sees fit.

Thus, I’ve embraced being the ‘raccoon’ that loads the dishwasher in this house. (Not quite as dramatic as some!)

A ChatGPT-created illustration of a cute raccoon happily loading the dishwasher, which looks fine but not precisely loaded.This came to mind because he went on a work trip, and I stuck things in the dishwasher for 2 days, and jokingly texted him to “come home and do the dishes that the raccoon left”. He came home well after dinner that night, and the next day texted when he opened the dishwasher for the first time that he “opened the raccoon cage for the first time”. (LOL).

Over the years, we’ve found other household tasks and chores where one of us has strong preferences about the way things should be done and the other person has less strong preferences. Similarly, there are some things that feel high-effort (and not worth it) for one of us but not the other. Over time, we’ve sorted tasks so things that feel high-effort can be done by the person for which it doesn’t feel high-effort, and depending on the preference level determines ‘how’ it gets done. But usually, the person who does it (because it’s low-effort) gets to apply their preferences, unless it’s a really weak preference and the preference of the non-doer doesn’t require additional effort.

Here are some examples of tasks and how our effort/preference works out. You can look at this and see that Scott ends up doing the dishwasher organization (after I load it like a raccoon) before starting the dishwasher and also has stronger preferences about laundry than I do. On the flip side, I seem to find it easier with routines for staying on top of household supply management including buying/re-ordering and acquiring and putting those away where we have them ready to go, because they’re not on a clear scheduled cadence. Ditto for managing the cats’ health via flea/tick medication schedules, scheduling and taking them to the vet, signing them up for cat camp when we travel, coordinating with the human involved in their beloved cat camp, etc. We end up doing a mix of overall work, split between the two of us.

A four-quadrant grid. Across the top it says "Effort" with low effort on the left and high effort on the right. Along the side it says "preference" with weak preference on the bottom and strong preference at the top. The implication is you can have a mix of preference and how much work certain chores are. Usually the person in the top left quadrant for a particular chore - representing easy or lower effort anad stronger preference - ends up doing that chore. For me that's household supply ordering; managing cat vet appts, etc. where due to Scott's much stronger preference his include the dishwasher, laundry, etc.
Could each of us do those tasks? Sure, and sometimes we do. But we don’t have to each do all of them, all the time, and we generally have a split list of who does which type of things as the primary doer.

Raccoons and burnout with chronic diseases

I have now lived with type 1 diabetes for almost 22 years. When I met Scott, I had been living with diabetes for 11 years. When he asked on one of our early dates what he could do to help, my answer was: “…nothing?” I’m an adult, and I’ve successfully managed my diabetes solo for decades.

Obviously, we ended up finding various ways for him to help, starting with iterating together on technological solutions for remote monitoring (DIYPS) to eventually closing the loop with an automated insulin delivery system (OpenAPS). But for the longest time, I still did all the physical tasks of ordering supplies, physically moving them around, opening them, managing them, etc. both at a 3-month-supply order level and also every 3 days with refilling reservoirs and changing pump sites and sensors.

Most of the time, these decades-long routines are literally routines and I do them without thought, the same way I put on my shoes before I leave the house. Yet when burnout is approaching – often from a combination of having five autoimmune diseases or having a lot of life going on while also juggling the ‘routine’ tasks that are voluminous – these can start to feel harder than they should.

Should, being the key word here.

Scott would offer to do something for me and I would say no, because I felt like I “should” do it because I normally can/am able to with minimal effort. However, the activation energy required (because of burnout or volume of other tasks) sometimes changes, and these minimal, low-effort tasks suddenly feel high-effort. Thus, it’s a good time to examine whether someone can – even in the short term and as a one-off – help.

It’s hard, though, to eradicate the “should”. I “should” be able to do X, I “should” be able to handle Y. But honestly? I should NOT have to deal with all the stuff and management of living with 5 autoimmune diseases and juggling them day in and day out. But I do have to deal with these and therefore do these things to stay in optimal health. “Should” is something that I catch myself thinking and now use that as a verbal flag to say “hey, just because I CAN do this usually doesn’t mean I HAVE to do it right now, and maybe it’s ok to take a break from always doing X and let Scott do X or help me with Y.”

Some of these “I should do it” tasks have actually become tasks that I’ve handed off long-term to Scott, because they’re super low effort for him but they’re mildly annoying for me because I have roughly 247 other tasks to deal with (no, I didn’t count them: that would make it 248).

For example, one time I asked him to open my shipment with 3 months worth of pump supplies, and unbox them so I could put them away. He also carried them into the room where we store supplies and put them where they belonged. Tiny, but huge! Only 246 tasks left on my list. Now, I order supplies, and he unboxes and puts them away and manages the inventory rotation: putting the oldest boxes on top (that I draw from first) and newer ones on bottom. This goes for pump supplies, CGM supplies, and anything else mail order like that.

A similar four quadrant chart with the same axes as the other graph, with effort on top (low left; high right) and execution preference (weak bottom, strong top). Similar to chores, we look at how our preferences and how much work it feels like, relative to each other, to decide if there are any tasks I can ask Scott to take on related to chronic disease management (like opening boxes and rotating stock of supplies being lower effort for him than me, due to my overall volume of tasks being higher)

This isn’t always as straightforward, but there are a lot of things I have been doing for 20+ years and thus find very low effort once the supplies are in my hand, like changing my pump site and CGM. So I do those. (If I was incapacitated, I have no doubt Scott could do those if needed.) But there’s other stuff that’s low effort and low preference like the opening of boxes and arranging of supplies that I don’t have to do and Scott is happy to take on to lower my task list of 247 things so that I only have about 240 things left to do for routine management.

Can I do them? Sure. Should I do them? Well, again, I can but that doesn’t mean I have to if there’s someone who is volunteering to help.

And sometimes that help is really useful in breaking down tasks that are USUALLY low effort – like changing a pump site – but become high effort for psychological reasons. Sometimes I’ll say out loud that I need to change my pump site, but I don’t want to. Some of that might be burnout, some of that is the mental energy it takes to figure out where to put the next pump site (and remembering the last couple of placements from previous sites, so I rotate them), combined with the physical activation energy to get up from wherever I am and go pull out the supplies to do it. In these cases, divide and conquer works! Scott often is more than happy to go and pull out a pump site and reservoir and place it where it’s convenient for me when I do get up to go do something else. For me, I often do pump site changes (putting a new one on, but I keep the old one on for a few extra hours in case the new one works) after my shower, so he’ll grab a pump site and reservoir and set it on the bathroom counter. Barrier removed. Then I don’t have to get up now and do it, but I also won’t forget to do it because it’s there in flow with my other tasks to do after my shower.

A gif showing a similar four quadrant graph (effort across top, execution preference along the side), showing a task going from the top left (low effort usually, strong preference for how it is done) moving to the right (high effort and still high preference), then showing it being split into two halves, one of which becomes a Scott task because it's lower effort sub-tasks and the remaining part is still high preference for me but has lowered the effort it takes.

There are a lot of chronic disease-related tasks like this that when I’m starting to feel burnout from the sheer number of tasks, I can look for (or sometimes Scott can spot) opportunities) to break a task into multiple steps and do them at different times, or to have someone do the task portions they can do, like getting out supplies. That then lowers the overall effort required to do that task, or lowers the activation energy depending on the task. A lot of these are simple-ish tasks, like opening something, getting something out and moving it across the house to a key action spot (like the bathroom counter for after a shower), or putting things away when they no longer need to be out. The latter is the raccoon-style approach. A lot of times I’ll have the activation energy to start and do a task, but not complete (like breaking down supply boxes for recycling). I’ll set them aside to do later, or Scott will spot this ‘raccoon’ stash of tasks and tackle it when he has time/energy, usually faster than me getting around to do it because he’s not burdened with 240 other tasks like that. (He does of course have a larger pile of tasks than without this, but the magnitude of his task list is a lot smaller, because 5 autoimmune diseases vs 0.)

Be a friend to your friend who needs to be a raccoon some of the time

I am VERY lucky to have met & fallen in love & married someone who is so incredibly able and willing to help. I recognize not everyone is in this situation. But there may be some ways our friends and family who don’t live with us can help, too. I had a really fantastic example of this lately where someone who isn’t Scott stepped up and made my raccoon-life instantly better before I even got to the stage of being a raccoon about it.

I have a bunch of things going on currently, and my doctor recommended that I have an MRI done. I haven’t had an MRI in years and the last one was pre-pandemic. Nowadays, I am still masking in any indoor spaces including healthcare appointments, and I plan to mask for my MRI. But my go-to n95 mask has metal in the nose bridge, which means I need to find a safe alternative for my upcoming MRI.

I was busy trying to schedule appointments and hadn’t gotten to the stage of figuring out what I would wear as an alternative for my MRI. But I mentioned to a friend that I was going to have an MRI and she asked what mask I was going to wear, because she knows that I mask for healthcare appointments. I told her I hadn’t figured it out yet but needed to eventually figure it out.

She instantly sprang into action. She looked up options for MRI-safe masks and asked a local friend who uses a CAN99 mask without wire whether the friend had a spare for me to try. She also ordered a sample pack of another n95 mask style that uses adhesive to stick to the face (and thus doesn’t have a metal nose bridge piece). She ordered these, collected the CAN99 from the local friend, and then told me when they’d be here, which was well over a week before I would need it for the MRI and offered to bring them by my house so I had them as soon as possible.

Meanwhile, I was gobsmacked with relief and appreciation because I would have been a hot mess of a raccoon trying to get around to sorting that out days or a week after she had sorted a variety of options for me to try. Instead, she predicted my raccoon-ness or otherwise was being a really amazing friend and stepping up to take something off my plate so I had one less thing to deal with.

Yay for helpers. In this case, she knew exactly what was needed. But a lot of times, we have friends or family who want to help but don’t know how to or aren’t equipped with the knowledge of what would be helpful. Thus, it’s useful – when you have energy – to think through how you could break apart tasks and what you could offer up or ask as a task for someone else to do that would lower the burden for you.

That might be virtual tasks or physical tasks:

  • It might be coming over and taking a bunch of supplies out of boxes (or medicine) and splitting them up and helping put them in piles or all the places those things need to go
  • It could be researching safe places for you to eat, if you have food allergies or restrictions or things like celiac
  • It could be helping divvy up food into individual portions or whatever re-sizing you need for whatever purpose
  • It could be researching and brainstorming and identifying some safe options for group activities, e.g. finding places with outdoor dining or cool places to walk and hike that suits everyone’s abilities and interests

Sometimes it’s the physical burden that it’s helpful to lift; sometimes it’s the mental energy burden that is helpful to lift; sometimes a temporary relief in all the things we feel like we have to do ourselves is more important than the task itself.

If you have a chronic disease, it’s ok to be a raccoon. There is no SHOULD.

Part of the reason I really like the raccoon analogy is because now instead of being annoyed at throwing things in the dishwasher, because whether I exert energy or not Scott is going to re-load it his way anyway, I put the dishes in without much precision and giggle about being a raccoon.

The same goes for chronic disease related-tasks. Even for tasks where Scott is not involved, but I’m starting to feel annoyed at something I need to do, I find ways to raccoon it a little bit. I change my pump site but leave the supplies on the counter because I don’t HAVE to put those away at the same moment. I usually do, but I don’t HAVE to. And so I raccoon it a bit and put the supplies away later, because it doesn’t hurt anyone or anything (including me) for those not to get put away at the same time. And that provides a little bit of comedic relief to me and lightens the task of changing my pump site.

It also helps me move away from the SHOULD weighing heavily in my brain. I should be able to get all my pump site stuff out, change it, and throw away and put away the supplies when done. It shouldn’t be hard. No one else has this challenge occasionally (or so my brain tells me).

But the burden isn’t about that task alone. It’s one task in the list of 247 things I’m doing every day to take care of myself. And sometimes, my list GROWS. January 18, my list was about 212 things I needed to do. Beginning January 19, my list jumped up to 230. Last week, it grew again. I have noticed this pattern that when my list of things to do grows, some of the existing “easy” tasks that I’ve done for 20 years suddenly feel hard. Because it is hard to split my energy across more tasks and more things to focus on; it takes time to adapt. And so being a raccoon for some of those tasks, for some of the time, provides a helpful steam-valve to output some of the challenges I’m juggling of dealing with all the tasks, because those tasks 100% don’t have to be done in the same way as I might do during “calm” static times where my task list hasn’t expanded suddenly.

And it doesn’t matter what anyone else does or what they care about. Thus, remove the should. You should be able to do this, sure – if you weren’t juggling 246 other things. But you do have 246 things and that blows apart the “should”.

Free yourself of the “should” wherever possible, and be a raccoon wherever it helps.

How to Exercise When Exercise Is Harder Than Your Normal

by Dana Lewis

I’ve been spending a lot of time thinking lately about how to optimize exercise and physical activity when your body doesn’t do what it’s supposed to do (or what you want it to do). We don’t always have control over our bodies; whereas we do, sometimes, have control over our actions and what we can try to do and how we do physical activity. A lot of my strategies for optimizing exercise and physical activity have actually been updating my mental models, and I think they might be useful to other people, too.

But first, let me outline a couple of scenarios and how they differ so we have a shared framework for discussing some of the mental strategies for incorporating activity and exercise into life with chronic diseases like autoimmune diseases.

Let’s imagine you’re running and you come to a cliff.

  • In scenario A, there’s a bridge across to the other side at the same level. It’s no big deal to continue running across and continue on your way.
  • In scenario B, there’s no bridge, and you tumble off the cliff, but then you are able to (eventually) work your way back up to the other side at the same level as the person who could just stroll across the bridge.
  • In scenario C, there’s no bridge but the cliff isn’t as steep of a drop off; instead, it’s like a 2% railroad grade trail sloping away and down. You continue down it, but you end up well below the other side where a bridge would’ve connected, and there’s no way up to that level. The longer you go, the farther you are from that level.
  • In scenario D, there is a cliff that you fall off of, and you pick yourself up and keep going but it’s on that 2% railroad grade sloping away and down. Like scenario C, you end up well below – and even farther below – where you would have been if the bridge had been there.

Illustration of a runner crossing a bridge; running up a slope after the trail drops first then returns to the same height (B); running down a slope that takes them below the target height (C); and a combination of a sharp drop then slope down (D), as explained in more words throughout the blog post.

This is basically illustrative of the different types of situations you can find yourself in related to health status.

  • If all is well, you’re in scenario A: no bumps in the road, you just carry on.
  • Scenario B is like when you have a short-term injury or accident (like breaking your ankle or a toe) where you have a sudden drop in ability but you are able to build back up to the level you were at before. It may take longer and feel like a hard slog, but usually you can get there.
  • Scenario C is when you have a chronic disease (or are experiencing aging over time) where there’s small changes in the situation or in your ability. Because of these factors, you end up below where you maybe would like to be.
  • Scenario D is when there’s an acute situation that triggers or results in a significant, sudden drop followed by a chronic state that mimics the downward 2% small change slope that adds up significantly over time, meaning you are well below compared to where you would like to be.

My personal experiences and living in Scenario D

I have dealt with scenario B via a broken ankle and a broken toe in past years. Those stink. They’re hard. But they’re a different kind of hard than scenario C and scenario D, where I’ve found myself in the last few years and more acutely, I now am clearly operating in scenario D: I have had an acute drop-off in lung function and have autoimmune diseases that are affecting my ability to exercise, especially as compared to “before”. In fact, I keep having cycles of scenario D where my VO2 max drops off a cliff (losing a full point or more) within 2-3 days, then plateaus at the low level during the length of that round of symptoms, before maybe responding to my efforts to bring it back up. And it doesn’t always go back up or respond to exercise the way it used to do, “before”, because well, my lungs don’t work like they used to.

It’s been pretty frustrating. I want to keep building on the hard work I’ve put into my last 2-3 years of ultrarunning. Last year around this time, I ran a personal best 100k (62 miles) and beat my brother-in-law’s 100k time. I’m pretty proud of that because I’m pretty slow; but in ultras if you pace well and fuel well, you can beat faster runners. (As opposed to much shorter distances where speed matters more!).

This year, however, I can barely trek out – on the best day – for a 4 mile run. I had originally envisioned that, due to my fitness level and cumulative mileage build up, I would be able to train for and run a fast marathon (26.2 miles / ~42k) this spring, and that was supposed to be what I was training for. (Fast being “fast for me”.) But instead of running ~30-40 miles a week, I have been running 8-16 miles per week and have only clocked in half of the total mileage I had done by this point last year. Argh. I didn’t expect to do as much overall, but 210 instead of 420 miles by the beginning of April shows how different it’s been and how limited I have been. I’ve dropped the scheduled plan for marathon training – or any hopes of ultra training this year, unless something changes drastically in a positive way that I’m not expecting.

I finally realized that comparing my abilities to “before” is the crux of a lot of my angst. It is a little hard when you realize over time (scenario C) that you can’t do something that you think you should be able to. For example, me trying to run fast: it just has never worked the way training to run fast seems to work for other people. Eventually, in “before times”, I had settled into a strategy of running far, but doing so more slowly, and that’s turned out to be way more fun for me. But when you have an acute adjustment in ability that isn’t like scenario B (e.g. you can expect to regain strength/function/ability over time), it’s really hard to wrap your brain around. And comparisons to ‘before’ feel inevitable. They’re probably part of the grieving process in recognizing that things have changed. But at some point, it’s helpful to recognize and picture that you ARE in scenario D. This includes grappling with and accepting the fact that something has changed; and you likely do not have control over it.

I have updated my mental model with some strategies, to help me frame and recognize that on bad days, I don’t have to push myself (even if deep down I want to, because I want to rebuild/gain fitness to where I “should” be) – and that I should save that strategy for “good” days.

Here’s what I’ve landed on, for general strategy approach, which applies to whatever activity that I ultimately choose for the day:

Overlapping circles of good days and bad days, showing that regardless of which day it is, I still go out every day. Strategies for 'bad' days include lowering expectations; changing activities; pacing slower; taking breaks; turning around; and not comparing to 'before'. Good/better days can involve a slow start but speed up or add distance if it feels good, as long as I pace/do it in a way that doesn't overdo it such that I can't be active as desired any following day.
The other thing, in addition to comparing distance, time and pacing to “before” abilities, that I have struggled with, is not having a training plan or schedule. Because my ‘good’ days (where my lungs do not seem to limit my activity) are unpredictable, I can’t build a training schedule and build up mileage/ability the way I used to. Ultimately, I have had to land on a strategy that I don’t like but accept is the most feasible one for now (suggested by Scott): have a “checklist” of activities for my ‘good days’, and have a checklist of activities for my ‘bad days’. This has helped me separate my before-desire for running being my primary activity (and thinking about my running ‘schedule’ that I wish I could go back to), and instead be more realistic on the day-of about what activities are ideal for the type of day I’m actually dealing with.

For example, on my worst days, I cannot run for 30 seconds without gasping for breath and any type of intensive activity (anything more than a really slow meandering walk or a few seconds of a really slow run) feels terrible. Walking feels yuck too but it’s tolerable when I go slow enough, even though my lungs still feel physically uncomfortable inside my rib cage. On medium bad days, I maybe can do a slow, easy, short run with 20 seconds run intervals; a walk; an easy super slow hike with lots of stopping; or an e-bike ride; or easy pace cross-country skiing (when it was winter). On good days? I can do anything! Which means I can hike more elevation at clippier paces (and I can actually push myself on pace) or run with some modicum of effort above a snail’s pace or run a snail’s pace that doesn’t hurt for 30 second intervals. Those are my favorite activities, so those are high on my list (depending on whether it’s the weekday or weekend) to try to do when I’m feeling good. On the bad days or less good days, I take whatever activity is available to me however I can get it.

Activity choice check list for really bad days (e.g. walk or easy e-bike) vs less bad days (slow, easy short run or very slow hike or easy ski) versus the better days where I can run, hike longer/faster, and ski any distance I want.
There are tons of activities so if you’re reading this, know that I’m making this list based on MY favorite types of activities (and the climate I live in). You should make your list of activities and sort them if it’s helpful, to know which ones bring joy even on the worst days and those are what you should prioritize figuring out how to do more of, as the days permit.

Some of this stuff maybe seems “duh” and super intuitive to a lot of people, especially if you’re not living in Scenario D. Hello to everyone in Scenario A! But, when you’ve been thrust off a metaphorical cliff into Scenario D, and there’s no way to do what you did “before”, figuring out how to pace and push yourself to regain what fitness you can OR preserve basic health functionality as long as you can…it’s all an experiment of balancing what amount of activity pushes you in a positive way and builds strength, fitness and health and balancing against going over the point where it causes short-term harm (to the point where it impedes your activity the following days) and/or long-term harm (e.g. further hurts your lungs or other body parts in a way that is either irreversible or hard to recover from).

The pep talk I wish I got that I’m giving to you now

Before I lived in Scenario D (lung stuff), I lived a lot in Scenario C: running with type 1 diabetes AND celiac AND Grave’s AND exocrine pancreatic insufficiency (which means I have to juggle glucose management while only eating gluten free and calculating and eating enzymes for any of that gluten free food I eat as fuel while running) was a lot to juggle, in of itself. I often thought about how much I was juggling while running along, while recognizing that a lot of that juggling was invisible to the outside. Which made me think and observe that even though I feel like every other runner was flying by me and not dealing with the exact same set of balls to juggle; some of those runners WERE probably juggling their own health stuff and limitations, too (or are parents juggling jobs and kid schedules and running, etc). Everyone’s got baggage that they’re carrying, of some sort, or are juggling things in a different way. So, juggling is hard. Kudos to everyone for getting out there for juggling with what they’ve got.

But especially now in Scenario D, it’s even more important to me that it’s not about being out there and running certain paces or hiking certain distances: it’s getting out there AT ALL which is the entire point. And I’ve made it my mission to try to compliment people for getting out there, when it feels like it’s appropriate to do so.

Last week, I was handed the perfect opportunity, and it turned out to be the best conversation I’ve had in a long time. A woman was coming uphill and commented that I had not forgotten my hiking poles like she had. I said yeah, they make a difference going downhill as well as up! She said something about huffing and puffing because she has asthma. DING DING: opportunity to celebrate her for being out there hiking uphill, even with asthma. (I pretty much said that and complimented her). She and Scott were trading comments about it being the beginning of hiking season and how they had forgotten their hiking poles and we told them we were making a list throughout the hike of everything else we had forgotten. They mentioned that they were 70 (wow!) and 75 (wow!) and so they didn’t think they needed walkie talkies because they would not separate on the trail (one of the things that we forgot to bring in case Scott mountain-goated-ahead of me on the trail at any point). We gave them our sincere compliments for being out there hiking (because, goals! I am aiming hard and working hard to get to the age of 70 and be able to hike like that!). She talked about it being hard because she has asthma and was struggling to breathe at first before she remembered to take her albuterol…and I pointed out that even if she was struggling and had to stop every few minutes, it didn’t matter: she was out there, she was hiking, and it doesn’t matter how long it takes! She thought that was the best thing to hear, but it was really what I try to tell myself because I love to hear it, too, which is celebrating going and not worrying about pace/slow/whatever. I told her I had a lung condition too (she’s the first stranger I’ve ever told) and she asked if I was stopping every 2 minutes and whether I had taken an inhaler. I explained most of my lung condition doesn’t respond to an inhaler but that yes, I too had to stop and catch my breath. But it was an awesome, gorgeous day and worth hiking in and that I was glad I had gone up. Ultimately, she said a lot of things that made it seem like my shared experience helped her – but in turn, seeing her and talking to her helped ME just as much, because it reminded me that yes, everyone else is juggling things while hiking too. And it’s really not about speed/pace/time; it’s absolutely about being out there and enjoying it.

So that’s what I’m trying to do: I’m trying to move beyond the comparison from what I did before, and simply compare to “am I going out at all and trying”. Trying = winning; going = winning, and that’s the new mental model that has been working really well for me as I spend more time in Scenario D.

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PS – if you read this and are in a similar situation of Scenario B, C, or D and want a virtual high five and to feel “seen” for what you’re working through – feel free to comment here or email any time. I see you going out and trying; which means you’re winning! And I’m happy to give a virtual comment the way I am trying to give comments out on the trails and compliment folks for the process of being out moving through the world in all the ways that we can, however we can. 

The Only Constant Is Change (And My Overactive Immune System)

by Dana Lewis

The canary in the coal mine was my swollen eyelids. No one (including my providers) seemed to care over the last 3 or so years, but all along, I knew it was a matter of time before my body decided to speak up even more loudly and tell me what else was wrong and what was causing the swollen eyelids. And in January, it was time. My body decided to speak up, and it did so loudly.

I woke up one day in January with a sensation of wool wrapped around my lungs. I could breathe…but not normally. It felt like oxygen was not flowing effectively out of my lungs. My VO2max also dropped suddenly and unexpectedly (given my activity levels) by about a point. And sometimes when I would exercise, my SpO2 levels would drop well below where they were supposed to be, and take a while to come up. Some days were better, but some days I could not walk and talk on the phone at the same time without feeling like I needed to gasp for breath in between sentences (and much shorter sentences than I would normally say). My lungs, in other words, have problems.

I’ve spent the last ~3 months trying to figure out what’s wrong with my lungs, but we are still not to the point where we can define exactly what is wrong. Or, how to make them better. Yet, at least. (I’m pessimistic about “fixing them” but I’d sure like to stop them from getting ‘worse’). Right now, they’re not TOO bad. I did pulmonary function testing and some of my numbers are in ‘normal’ range (although they’ve dropped anywhere from 5-17% from baseline in 2015, when I had a bunch of above-normal results). Other numbers, however, are very below normal (<80% is not normal): some are in the 65-70% range. Bleh. Some are even lower. Collectively, they show TWO possible types of things going on, one of which is restrictive lung disease of some sort; the other is some possible small airways-related disease (which means albuterol might help that). No obstruction, which is good, in part because it crosses off one area of concern off the list, but I still have two other areas of concern. I also did a follow up high-resolution CT (aka HRCT) on my lungs which showed no obvious inflammation or fibrosis (scarring) which is both really good news – nothing terribly wrong yet to the naked eye – but also frustrating because clearly there is something wrong. My doctor and I are both concerned by the level of symptoms, and my doctor managing my autoimmune condition has suggested that the lung stuff, whatever it is, is now a separate disease/on a separate path than the rest of my autoimmune disease activity, and it should be managed by a pulmonologist.

So we are still waiting until my pulmonologist appointment to get more answers (every specialist referral means another 6 weeks to schedule the next new appointment, stringing out the problem solving process over time), and in the meantime I try to do what exercise I can do. Which is still exercising every day, but slowly and with lungs that hurt. Some days with lower blood oxygen availability; some days with OK oxygen (as measured by SpO2). Some days also hurt more to physically breathe, and on those days that often starts from the moment I wake up before I’ve even sat up in the bed. I have not been running a lot, which makes me sad. When I do run, it’s not joyful most of the time, although I try to appreciate the ability to run at all on those ‘bad’ days and savor the few moments of joy on the few better days. Not because of my legs, but because of my lungs. Sometimes just walking, even super slowly, also sucks.  But sometimes, I can still ski or hike like I used to, and other days I ski or hike like a snail pushing its way through a sea of peanut butter (very slowly and usually with a lot of vocal complaining about it, when I can afford to catch and waste my breath on words to complain). I’ve had to shift my focus from training with a schedule and a plan to trying to figure out a list of what I can do on a “good lung day” (which is <50% of the time). On “bad lung” days, I just focus on moving at all, however seems feasible that day.

Meanwhile, it’s not just my lungs. At the same time the lung stuff developed, I also developed pretty serious and sudden joint pain. It particularly affects the vertebrae in my spine, hips, and upper spine between my shoulders and neck. Did you know you have ‘joints’ where your ribs connect to cartilage and your cartilage connects to your sternum? I’m re-learning some of the many places we have joints that we usually don’t pay much attention to. Heat helps, so I spend a lot of time sitting against a heating pad, which thankfully means the biggest areas impacted by this issue can get regular heat therapy. But it also will sporadically “pang” with pain in other random joints such as in my hand, the middle of my foot, a toe joint, or my shoulder. Oral NSAID does nothing for the pain, but when the pain is in easy-to-reach spots, topical NSAID gel does help some, as does the application of heat to those areas. It can get pretty problematic, though, to the point where rolling over in bed at night wakes me up taking my breath away because I rolled over and the joint pain in my spine was so painful it woke me up. (And thus I don’t sleep well those nights, which also stinks.)

See https://xkcd.com/1907/ for source image and alt text, it's well known XKCD immune system comic highlighting the strength of our immune systems
This XKCD has always been one of my favorites and is feeling very relevant right now. See https://xkcd.com/1907/ for source of this image and alt text.

What the joint pain, like the eyelids cycling in and out of inflammation, is telling us is: the inflammation is spreading in other parts of my body and my body is attacking itself elsewhere, too. My eyelids continue to swell, but now there’s also a red patch particularly outside of my right eye that provides a visual cue to Scott when my inflammation is particularly at peak. But the joint pain and the lungs collectively mean my fifth autoimmune disease is angry and kicking in protest, lashing out at the rest of my body. And we need to do something about that, and so we are.

Treating autoimmune diseases is not without risk due to the treatment itself. There’s the short-term risk of side effects and the long-term risk of side-effects. When autoimmune disease gets as problematic as mine is (attacking my lungs; the escalating joint pain); it warrants risking the side effects of the medication, even though it’s scary. Also scary is the knowledge that we are trying to tweak my immune system. Even though I know my immune system is *too* strong and *overreacting*, it’s what I know, and it’s scary to think about trying to turn it down, because there is the risk that it overshoots and turns down too far in the process of trying to take it down just a notch.An image of two hedgehogs. On the left, a normal looking cute hedgehog with the caption "typical immune system". On the right, a hedgehog with wildly extended spines (like spikes) and lightning bolts shooting out of them, with the caption "my immune system".

Ultimately, the first-line treatment my doctor and I chose is a mild version of immunosuppression, which is an immunomodulator designed to modulate only part of the immune system. This is more mild than what most people think of when they think of immunosuppression (e.g. to go with organ transplant), and while they don’t know exactly how it works, it seems like it causes an effect of turning down *part* of the immune system, but not all. (In theory.) While it’s not been very well tested in studies in my autoimmune disease (this is the story line through allllll the medical literature about my condition), there’s a “cousin” autoimmune disease for which there are a lot of studies and data showing it helps some people, and particularly has a good chance of helping the joint pain. However, the risk of negative outcomes is also not zero. In the medicine we decided was best for me, there is a risk of it accumulating in my retina and causing vision loss. Yikes. The risk in the first 5 years is about 1%, meaning that in people who take this medication every day for 5 years, 1 in 100 will begin to have vision issues. At the 10 year mark, however, this goes up, and 10% (10 in 100 people) begin to have vision issues. And the problem is, this vision damage is not reversible. Plus, the medication has a half life of months, meaning it takes time to ramp up, but also that if you start to notice problems and need to stop the medication, there is another set of weeks to months before the medication levels actually begin reducing in your body, so you get additional damage possibly during that time. As one might imagine, I am very nervous about this risk profile, but this possibly helps illustrate exactly how bad the situation is that I am in: this joint pain is not ideal for quality of life and it is a serious symptom of a serious problem, which is a rampaging immune system that needs to be treated.

While I am not currently fully immunosuppressed, it does mean that I am choosing to continue to be careful to limit my risk in exposure to infectious diseases. For me, that means continuing what I’ve been doing since early on in the pandemic: I am already using a portfolio of risk mitigation strategies including seeking better ventilated air in indoor spaces (using CO2 monitor); masking in any indoor spaces outside home (unless I am at family’s house where everyone confirms no symptoms, tests negative, etc); using portable air purifiers and far-UVC lights when feasible; getting vaccinated and boosted against all the infectious diseases I can, etc. That feels right for me, although it’s not necessarily what others might choose to do in my situation. But again, my risk profile not only includes 5 autoimmune diseases, for which we are trying to turn my immune system *down*; I also have some kind of lung disease now, with lowered lung capacity that is directly influencing my daily living ability. So I am happy to do all the easy things that I can to further lower the risk of hurting my lungs more, such as by limiting exposure to acute respiratory infections that could lead to all kinds of further issues and complications that I just don’t need or want to deal with. So, the biggest change is mostly to what I will continue to ask of family members, which is reporting any and all symptoms of any type of illness, even if it’s “just” a cold, because a “cold” to someone else is likely going to be a lot more serious to me, given my immune and lung status. Plus, too, I may end up needing to switch to a different level of immunosuppression, which further changes the calculation of short- and long-term risk of acute illness exposure.

I started the medicine a few weeks ago, and I managed to avoid the worst of the short-term side effects that cause people to discontinue it. In weeks 2 & 3, it seemed like it was helping reduce the joint pain. I got excited, but then very un-excited when the joint pain manifested again (along with re-swollen eyelids and the spreading red patch outside of my eye). I was hoping this medication would permanently depress the inflammation and systemic attacks, but instead, so far, it looks like it might slightly dampen the inflammation cycles (and thus symptoms), and they haven’t yet completely gone away. And my lungs continue to be problematic, which matches my doctor’s prediction so far that they will not be impacted by this medication and I need some ideas from the pulmonologist to treat my lungs.

A wavy line over time showing the ups and downs of my joint pain cycles. Across the top are strips of color that show the periods of 'bad lungs' that sometimes overlap with the joint pain. It also shows a line where I started the meds and things got better (?!), but then crested back up. Then there's a bunch of question marks in the future indicating the uncertainty of not knowing what will happen and whether the symptoms will be managed by my treatment or not.

So here I am. 5 (or 6) autoimmune diseases; still acutely aware of the stigma that comes with living with (so) many chronic diseases; entering new territory of immunomodulation; and possibly in the future, maybe needing more immunosuppression. I don’t have a lot of answers or even a good understanding of what is going on with my body (for example, what exactly the problem(s) are in my lungs), which is frustrating. More acutely, some days just stink either due to bad lungs or due to joint pain. When I get really unlucky, I have a bad joint day on the same day as a bad lung day. The challenge with bad lung days is that it impacts my ability to exercise, whereas my joint pain doesn’t keep me from exercising (because it’s no worse during exercise and sometimes exercise distracts my brain from the pain signals). So during bad lung days, some of my “treatment” options for the bad joint pain are reduced. Bad lung days also make me feel really fatigued and short of breath even sitting down doing nothing, so I have some days where I’m doing normal workloads of things I want to do, and other days where I’m doing less than I would like. I have been slow to respond to emails related to non-time-sensitive-projects because basically, I’m over here just trying to breathe, and that’s hard. So: sorry to anyone who’s read this who has happened to email me – consider this an auto-responder about why I have not yet responded.

Stay tuned for more posts: I’ll be using this framework to talk about exercise strategies for exercising with ‘bad lungs’ and strategies that I’ve found to be effective (see this post as an example for strategies) so far on the days where I’m struggling to breathe and exist but also want to exercise so I don’t decondition my body so I can do the things I want to do on the “good days”.

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If you’re a family member or friend who’s read this and wants to acknowledge what I’m going through but doesn’t know what to say – it’s ok. I don’t know what to say, either, which is in part why I haven’t said anything to most people! But it felt like it was time to start sharing some of what I’ve been going through. Feel free to send me a purple heart emoji (or a cat picture), no caption/text needed, and that’s an a-ok way to acknowledge that you’ve seen this. 💜

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PS – one of my friends described my lungs as “sad balloons” and for some reason, that analogy felt really appropriate to how they physically feel inside my rib cage. Sad, and ineffective. I gave ChatGPT some prompts to illustrate “sad balloon” lungs and ended up with these, which feels cathartic to illustrate.

Two images side by side. On left, a comic-style drawing as if a young woman with a ponytail is in an xray (black and white drawing). You can see several balloons inside each of her lungs with frowny/sad faces. On the right is a grey and white drawing of a pair of lungs as individual clusters of balooons, some with sad faces.