eladnarra's recent activity

  1. Comment on Weekly coronavirus-related chat, questions, and minor updates - week of April 25 in ~health.coronavirus

    eladnarra
    Link Parent
    Yeah, I'm in a similar spot - highish risk with high risk loved ones, so I turn any awkwardness about wearing a mask into anger that we're being left to our own devices. Luckily no one has tried...

    Yeah, I'm in a similar spot - highish risk with high risk loved ones, so I turn any awkwardness about wearing a mask into anger that we're being left to our own devices. Luckily no one has tried to tell me I can take it off yet, but that may be because I only go to doctor appointments.

    1 vote
  2. Comment on Humble Stand With Ukraine Bundle in ~games

    eladnarra
    Link Parent
    I'd love a key for Slay the Spire if it's still on offer! :)

    I'd love a key for Slay the Spire if it's still on offer! :)

    2 votes
  3. Comment on Weekly coronavirus-related chat, questions, and minor updates - week of March 14 in ~health.coronavirus

    eladnarra
    Link Parent
    Yeah, it'd be nice if the guidelines were based more on this type of framework. It does kind of suck that it assumes "daily living" for immunocompromised people doesn't involve going go to work or...

    Yeah, it'd be nice if the guidelines were based more on this type of framework. It does kind of suck that it assumes "daily living" for immunocompromised people doesn't involve going go to work or school, though.

    I'd also really like a framework where we assume that some places are absolutely essential (healthcare settings, supermarkets, pharmacies, etc) and keep mask mandates in those places longer.

    I wonder if their numbers check out?

    3 votes
  4. Comment on Weekly coronavirus-related chat, questions, and minor updates - week of March 14 in ~health.coronavirus

    eladnarra
    (edited )
    Link Parent
    Much of the currently missing funding was for dealing with things now, not future waves. And even when COVID becomes endemic (not there yet), we'll need continued funding. The most distressing...

    And it's important to prepare for another wave, but we don't know it will happen.

    Much of the currently missing funding was for dealing with things now, not future waves. And even when COVID becomes endemic (not there yet), we'll need continued funding.

    The most distressing part of this is that the CDC said "okay abled people, you don't have to wear masks, but don't worry disabled people, we have treatments" — and now monoclonal antibodies, Paxlovid, and Evusheld for immunocompromised people are at risk.

    Edit: some programs are being cut starting next week, so I feel like that counts as a fairly immediate problem. Plus, if manufacturers of things like tests see there's no funding after a certain date, they'll stop making as many tests — so if even if there's more funding later during a surge, it'll take a while to ramp up production again. We've already seen this with past surges.

    4 votes
  5. Comment on Weekly coronavirus-related chat, questions, and minor updates - week of March 14 in ~health.coronavirus

    eladnarra
    Link Parent
    Also lack of access to healthcare in general, I assume. People who are already sick are at higher risk of severe outcomes, especially if they haven't been able to get adequate care for their...

    Also lack of access to healthcare in general, I assume. People who are already sick are at higher risk of severe outcomes, especially if they haven't been able to get adequate care for their chronic illness.

    3 votes
  6. Comment on Weekly coronavirus-related chat, questions, and minor updates - week of March 7 in ~health.coronavirus

    eladnarra
    Link Parent
    Always kind of darkly funny to see case rates like this being treated as a major emergency... When double that was apparently business as usual in my town.

    Always kind of darkly funny to see case rates like this being treated as a major emergency... When double that was apparently business as usual in my town.

    1 vote
  7. Comment on Do you track your time? in ~life

    eladnarra
    Link
    I do, using toggl - partially for work hours/invoicing, and partially for health/energy pacing. I have various things that I know take a lot of mental energy (work, college, health appointments...

    I do, using toggl - partially for work hours/invoicing, and partially for health/energy pacing. I have various things that I know take a lot of mental energy (work, college, health appointments and dealing with the medical system), so I track those. I can tell if I'm doing more than usual (often precipitating a crash) or less than usual (a more subtle sign that I'm in the middle of a low energy period).

    Toggl also has a pomodoro feature which I use to try to enforce breaks, which is... Somewhat successful.

    3 votes
  8. Comment on Hi, how are you? Mental health support and discussion thread (March 2022) in ~talk

    eladnarra
    Link
    It's hard not to be doom and gloom about COVID. I'm high risk according to the CDC - I'm "physically inactive" due to my chronic illnesses, and I can't change that without making myself sicker....

    It's hard not to be doom and gloom about COVID. I'm high risk according to the CDC - I'm "physically inactive" due to my chronic illnesses, and I can't change that without making myself sicker. I'm also higher risk for post viral issues based on my medical history. My partner is also high risk for several reasons according to the CDC. And my parent are older, of course.

    I need to see doctors in person, but many here don't require masks anymore. I'm not sure what high risk people are supposed to do. Wear an N95 and then hope the seal holds when we walk into a room full of sick people, apparently. Thanks CDC. Really comforting to be told on the one hand that I'll likely have severe outcomes, but on the other hand I don't deserve to be able to go to the doctor safely.

    That's all I'm asking for. I'll keep avoiding stores, grocery shopping, restaurants, movies, whatever. It sucks but I'll do it. But now I have to avoid doctors, too? Great idea, to make chronically ill people avoid medical care. /sarcasm

    5 votes
  9. Comment on Weekly coronavirus-related chat, questions, and minor updates - week of February 28 in ~health.coronavirus

    eladnarra
    Link Parent
    I guess that would have been an improvement, yeah. But even with that, I don't really know what happens when the next variant comes along. The new guidelines are so weak and weighted to...

    I guess that would have been an improvement, yeah.

    But even with that, I don't really know what happens when the next variant comes along. The new guidelines are so weak and weighted to hospitalizations, that we'll be pretty far into the upswing by the time masking kicks in again.

    I'm feeling pretty bleak about it all. Today I tried to find a new gynecologist, and the closest practice to me no longer requires masks, even though my county is red (on both the new map and the old map that still applies to healthcare settings).

    5 votes
  10. Comment on Weekly coronavirus-related chat, questions, and minor updates - week of February 28 in ~health.coronavirus

    eladnarra
    Link Parent
    I don't know about healthy folks, but the chronic illness/disability community on Twitter knows about the map - it existed in various forms before with the old guidelines, and plenty of counties...

    I don't know about healthy folks, but the chronic illness/disability community on Twitter knows about the map - it existed in various forms before with the old guidelines, and plenty of counties went from red to green after the switch in guidelines, which isn't very comforting.

    Conditions are changing, sure, but they also changed the standards they use to assess those conditions, making things seem suddenly a lot better than they actually are (in terms of cases). And for those of us concerned about high risk individuals and people getting long COVID, community case rates are more important than hospitalizations.

    The new guidelines prioritize healthy, vaccinated people, with the assumption that if they get sick it's fine (ignoring long COVID). Only recommending masks at the point of extremely high community spread isn't public health or collective action, because you ignored high risk and unvaccinated folks until that suddenly much higher threshold is met. Their new standard is to protect hospitals, and to protect healthy people from dying from a heart attack because the hospitals are full of high risk/unvaccinated folks; it doesn't appear to be meant to protect everyone, which is the point of the article.

    3 votes
  11. Comment on Weekly coronavirus-related chat, questions, and minor updates - week of February 28 in ~health.coronavirus

    eladnarra
    Link Parent
    On a personal note, if you live in an area with high case rates and you have the resources to do so, please keep wearing masks in public, indoor spaces. High risk people's lives just got even...

    On a personal note, if you live in an area with high case rates and you have the resources to do so, please keep wearing masks in public, indoor spaces. High risk people's lives just got even smaller than they were before. I can't keep putting off dentist and doctor appointments much longer...

    7 votes
  12. Comment on Weekly coronavirus-related chat, questions, and minor updates - week of February 28 in ~health.coronavirus

    eladnarra
    Link
    The Biden Administration Killed America’s Collective Pandemic Approach: Protections meant to shield everyone can’t be a matter of personal preference.

    The Biden Administration Killed America’s Collective Pandemic Approach: Protections meant to shield everyone can’t be a matter of personal preference.

    In the new playbook, recommendations for individual people, not communities, sit front and center, and mitigation frequently falls under the purview of medicine rather than public health—heaping more responsibility on the already dysfunctional American health-care system. “It is public health’s job to protect everybody, not just those people who are vaccinated, not just those people who are healthy,” says Theresa Chapple-McGruder, the director of the Department of Public Health in Oak Park, Illinois. I asked Chapple-McGruder if the CDC’s new guidelines meet that mark. “Not at all,” she said. (The CDC did not respond to a request for comment.)

    [...]

    A medical framework—almost resembling a prescription model—is not public-health guidance, which centers community-level benefits achieved through community-level action. People act in the collective interest, a tactic that benefits everyone, not just themselves. Where the CDC leaves us now feels especially disorienting when we consider where most mask-up messaging began: with the idea that masking was an act of communal good—“my mask protects you, your mask protects me.” Now masking is about, as the CDC puts it, “personal preference, informed by personal level of risk.”

    6 votes
  13. Comment on What games have you been playing, and what's your opinion on them? in ~games

    eladnarra
    Link
    Elden Ring! I've never played a game by From Software before, nor have I played any of the "souls-like" games that they have spawned. I usually watch my partner play, and was content to do so this...

    Elden Ring!

    I've never played a game by From Software before, nor have I played any of the "souls-like" games that they have spawned. I usually watch my partner play, and was content to do so this time, too... Until they played with someone whose character was a "knight" named Alanna, and I got very, very excited about the possibility of making a character from a book series I loved reading as a kid.

    So I promptly made my own vagabond named AlannaTheLioness, complete with cooper hair and violet eyes. I've have died twice so far, both times falling off a cliff, but I expect to die much more once I stop being so cautious. I feel like a vagabond is one of the worst classes I could have gone for, since I am very bad at melee and prefer range/magic, but I'm committed to being as close to a "knight" as I can. My stats will probably be crap, though, because Alanna is also a magic user, so of course I must do both.

    I'm kind of confused by my sudden excitement over this, but it's been a fun way to engage with a game that would normally be too intimidating, so I'm not going to question it too much~

    7 votes
  14. Comment on Weekly coronavirus-related chat, questions, and minor updates - week of February 21 in ~health.coronavirus

    eladnarra
    Link Parent
    sighs I'd already accepted giving up travel "for pleasure" for the foreseeable future, but it really sucks when specialists in your illnesses are all at least 7 hours away by car, if not across...

    sighs

    I'd already accepted giving up travel "for pleasure" for the foreseeable future, but it really sucks when specialists in your illnesses are all at least 7 hours away by car, if not across the country. I guess I may have some multi-day road trips in my future, to the detriment of my health.

    5 votes
  15. Comment on Weekly coronavirus-related chat, questions, and minor updates - week of February 21 in ~health.coronavirus

    eladnarra
    Link
    Looks like the CDC is going to change their masking recommendations to be based on hospitalization rates more than cases. Nice for people who are low risk, I guess. Sucks for the rest of us,...

    Looks like the CDC is going to change their masking recommendations to be based on hospitalization rates more than cases. Nice for people who are low risk, I guess. Sucks for the rest of us, including folks who think they're low risk but aren't.

    [Realistically it won't change much for me because I'm in Florida and no one masks here anyway, but if they drop the requirement for airplanes or doctor offices, I won't be able to travel for medical appointments any time soon.]

    8 votes
  16. Comment on What’s something people commonly misunderstand about you? in ~talk

    eladnarra
    (edited )
    Link
    Unless people see my day to day, it can be hard for them to understand how my chronic illnesses are actually disabling. I'm sure this happens when I go to doctor appointments - most recently I...

    Unless people see my day to day, it can be hard for them to understand how my chronic illnesses are actually disabling. I'm sure this happens when I go to doctor appointments - most recently I talked with a geneticist for a follow up and he summarized my current energy as, "You're working part time and taking classes, sounds pretty good."

    I'm taking one class, and working less than 10 hours a week. Not sure that's "good" energy levels...

    Part of this is my difficulty fully explaining the things I live with; they're normal to me, so it doesn't occur to me to tell a doctor that I can only walk the length of my street. Another part of it is that people generally see me when I'm at my best, since I can't leave the house at my worst. But part of it is probably a bit of ableism.

    We had some close family friends that I grew up seeing fairly frequently. One of them confessed to me that when I first got ill, they all thought my parents were coddling me and that I wasn't really that sick. It was only after they saw me in person struggling with normal things that they realized I was actually sick. It really hurts that people who had known me almost my entire life thought that I was just being lazy and dropping out of school for no reason. I was a straight A student who loved school, how could they think that? How could they think my parents, who always had high academic standards and expected me to go to college, would let me drop out of high school if I was capable of attending? It's honestly hard to trust them now...

    7 votes
  17. Comment on Weekly coronavirus-related chat, questions, and minor updates - week of February 14 in ~health.coronavirus

    eladnarra
    Link Parent
    I'm so sorry - it's outrageous that it took 3 years and an article in The Atlantic for your mother-in-law to recognize your risk, but thank you Ed Yong indeed. I haven't been as isolated, but it's...

    I'm so sorry - it's outrageous that it took 3 years and an article in The Atlantic for your mother-in-law to recognize your risk, but thank you Ed Yong indeed.

    I haven't been as isolated, but it's still a struggle. I've been delaying necessary doctor appointments and tests, and currently the only people I see are my spouse (who I live with and luckily works from home) and my mum who helps me around the house (my disability makes chores difficult).

    It makes me so angry when people tell us to stay home, ignoring that we have social needs just like everyone else, not to mention medical appointments, work, school, etc. And as the article mentioned, it sucks to be ignored, but to be mocked for trying to stay alive/not worsen disabilities is even worse.

    7 votes
  18. Comment on Weekly coronavirus-related chat, questions, and minor updates - week of February 14 in ~health.coronavirus

    eladnarra
    Link
    "THE MILLIONS OF PEOPLE STUCK IN PANDEMIC LIMBO: What does society owe immunocompromised people?" Ed Yong has been doing a lot of good journalism highlighting overlooked aspects of the pandemic,...

    "THE MILLIONS OF PEOPLE STUCK IN PANDEMIC LIMBO: What does society owe immunocompromised people?"

    When the coronavirus pandemic began, Emily Landon thought about her own risk only in rare quiet moments. An infectious-disease doctor at the University of Chicago Medicine, she was cramming months of work into days, preparing her institution for the virus’s arrival in the United States. But Landon had also recently developed rheumatoid arthritis—a disease in which a person’s immune system attacks their own joints—and was taking two drugs that, by suppressing said immune system, made her more vulnerable to pathogens. Normally, she’d be confident about avoiding infections, even in a hospital setting. This felt different. “We didn’t have enough tests, it was probably around us everywhere, and I’m walking around every day with insufficient antibodies and hamstrung T-cells,” she told me. And she knew exactly what was happening to people who got infected. One night, she found that in the fog of an earlier day, she had written on her to-do list: Make a will. “And I realized, Oh my God, I could die,” she said. “I just cried and cried.”

    Two years later, COVID-19 is still all around us, everywhere, and millions of people like Landon are walking around with a compromised immune system. A significant proportion of them don’t respond to COVID vaccines, so despite being vaccinated, many are still unsure whether they’re actually protected—and some know that they aren’t. Much of the United States dropped COVID restrictions long ago; many more cities and states are now following. That means policies that protected Landon and other immunocompromised people, including mask mandates and vaccination requirements, are disappearing, while accommodations that benefited them, such as flexible working options, are being rolled back.

    This isn’t a small group. Close to 3 percent of U.S. adults take immunosuppressive drugs, either to treat cancers or autoimmune disorders or to stop their body from rejecting transplanted organs or stem cells. That makes at least 7 million immunocompromised people—a number that’s already larger than the populations of 36 states, without even including the millions more who have diseases that also hamper immunity, such as AIDS and at least 450 genetic disorders.

    In the past, immunocompromised people lived with their higher risk of infection, but COVID represents a new threat that, for many, has further jeopardized their ability to be part of the world. From the very start of the pandemic, some commentators have floated the idea “that we can protect the vulnerable and everyone else can go on with their lives,” Seth Trueger, who is on immunosuppressants for an autoimmune complication of cancer, told me. “How’s that supposed to work?” He is an emergency doctor at Northwestern Medicine; he can neither work from home nor protect himself by avoiding public spaces. “How am I supposed to provide for my family or live my life if there’s a pandemic raging?” he said. Contrary to popular misconceptions, most immunocompromised people are neither visibly sick nor secluded. “I know very few people who are immunocompromised and get to live in a bubble,” says Maggie Levantovskaya, a writer and literature professor who has lupus, an autoimmune disorder that can cause debilitating inflammation across the entire body.

    Ed Yong has been doing a lot of good journalism highlighting overlooked aspects of the pandemic, and this is one of his best yet. He wrote a little on Twitter about this article:

    I want to say something more about this piece on immunocompromised people, and how I’m thinking about journalism in this moment.
    I’d love it if these pieces change minds; the odds feel low sometimes but the possibility exists, and we should shoot for it. But even if that doesn’t happen, we can still fulfil the incredibly important goal of making marginalized people feel seen and heard.
    Bearing witness to suffering is one of the most profoundly important things we can do as journalists—and as people. In a world where so many folks hear the implicit message that their lives don’t matter, our work can say: Actually, they do.

    I'm not traditionally immunocompromised; I just have a weird immune system and illnesses that are likely to get worse long term if I get COVID. But yeah. This kind of reporting does help.

    8 votes
  19. Comment on I forgot how to have fun in ~talk

    eladnarra
    Link Parent
    Awesome, thanks! My partner and I are just about to have a discussion about budgeting and combining our finances, and this looks like it'll help a lot going forward.

    Awesome, thanks! My partner and I are just about to have a discussion about budgeting and combining our finances, and this looks like it'll help a lot going forward.

    3 votes
  20. Comment on I forgot how to have fun in ~talk

    eladnarra
    Link Parent
    I see you've moved on to another software, but would you recommend the YNAB app if someone wanted to get started with the method? (Looks like students can get 12 months free...)

    I see you've moved on to another software, but would you recommend the YNAB app if someone wanted to get started with the method? (Looks like students can get 12 months free...)

    2 votes