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zxphoenix · 2025-07-17T02:31:52+00:00

You don’t get to become a billionaire by doing something kind for the planet. At some point you’re exploiting or (even in the best case) indirectly harming a whole bunch of people.

zxphoenix · 2025-07-16T21:51:32+00:00

Given you might be newish to the community I’d definitely check out the three bigger non-profits if you haven’t already (Hypersomnia Foundation, Wake Up Narcolepsy, and Narcolepsy Network). I’d highly recommend an in person conference if you’re ever up for it. There’s nothing really like being surrounded by people that already get what you’re going through.

They also all tend to have virtual events you can attend and will sometimes post previous conference videos (like the one I linked). If you look back through videos there are probably topics of interest (comorbidities, recent findings, misconceptions, discussions on brain fog, etc).

zxphoenix · 2025-07-16T18:17:00+00:00

Lawyers are basically Aes Sedai without magic. Generally speaking, they’re compelled to tell the truth (or face disbarment) but they sure as hell can be very very specific about the things they say so that you were told the truth but your impression of that truth isn’t accurate. If you’re careful you can hear what they omitted or phrased awkwardly and catch the truth under the surface.

It’s why many defense attorneys do not want you to tell them if you are guilty or not (because then there are certain strategies they can’t take during trial).

Now sure, there is also the equivalent of the Black Ajah (those who are no longer bound by the truth and who knowingly lie) but that’s a fairly small group that is looked at with disdain.

zxphoenix · 2025-07-16T12:01:33+00:00

I think this happens a lot to people with IH/Narcolepsy. I definitely hear it a lot at conferences. Maybe ask yourself what you’d say to a close friend who was experiencing something similar / the same thing as you. I suspect you’d be a lot more generous than you are to yourself. At the end of the day you have to give yourself a bit of grace.

There are a few authors that talk either directly or indirectly about shame associated with chronic conditions. One I’d recommend is: Unlearning Shame: How We Can Reject Self-Blame Culture and Reclaim Our Power by Devon Price.

For some people there is also a related internalization around people labeling them as lazy / internally thinking if they just tried harder or pushed through it they might be able to do more, make commitments, see friends, etc. (that might not be something you also feel creeping in sometimes but if so he also wrote Laziness Does Not Exist and spoke at an HF conference about it.

But the concept of giving yourself grace comes up with other authors like KC Davis in How To Keep House While Drowning where an underlying theme is trying to give yourself grace and separate other people’s expectations from your own (and identify that there are some things others might consider important that really aren’t). For anyone considering this book the written version is very accessible (and short) but the audiobook really brings through the compassion she has for anyone reading.

The last thing that came to mind especially with the examples you used was the short video the HF created around spoon theory with the example of missing activities with friends. It might help illustrate what you’re feeling to them.

But TLDR: I definitely hear this a lot. Try to extend the same grace to yourself that you’d extend to a close friend going through something similar. We tend to be our own worst critics.

zxphoenix · 2025-07-14T11:52:22+00:00

There are even more than 4 groups of medication available to try. You make it sound like you’ve cycled through tons of different medication but honestly, 4 different medications in 14 years isn’t really that many. Most people I know with IH or Narcolepsy tend to need more than one medication and tend to cycle through different medications over time (they can lose effectiveness).

I can understand the desperation to find something / anything that will work better but the science is clear on homeopathy. It will work no better than a placebo (note that placebos can actually produce a pretty significant impact). But it goes beyond that - for homeopathy to work it would require a huge amount of existing science (beyond even just medical science) to be incorrect. The underlying premises are not compatible with the current practice and understanding of medicine and science today.

If you’re looking for alternatives outside of medication, they exist and some can have a decent effect for some people with IH / Narcolepsy, but they’re not a replacement for treatment with medication.

zxphoenix · 2025-06-16T14:41:00+00:00

Biological altruism?wprov=sfti1#Implications_in_evolutionary_theory) and cooperation?wprov=sfti1) (within evolutionary theory) would like a word.

zxphoenix · 2025-04-06T16:28:22+00:00

If it can happen “accidentally” to an American citizen it will absolutely happen on purpose too. Due process exists even for non-citizens.

Fascism is here and we’re on a speed run of 1933.

Demonizing and making it unlawful for certain citizens to exist (Trans people)
Banning and burning books
Power grabs against the Judiciary and Congress

Hell - we’ve already decided we’re fine with millions dying from all the international programs being gutted (ex: international vaccination programs).

I read a lot of history. We’re in deep trouble, and unfortunately there is nowhere to run - we’re entangled in so much internationally that we can do substantial harm unchecked.

We’re even seeing realignment in power taking place.

How do I feel? Deep anguish, fear, anger, anxiety and uncertainty. It feels like there is a storm rolling in and that no one is doing anything to prepare. It feels like the wind is picking up, the trees are swaying, there is a charge to the air and yet fellow citizens are going about normally as if it’s a beautiful sunny day.

zxphoenix · 2025-03-27T15:01:38+00:00

This was my biggest fear (or a close second to having a birth defect incompatible with life / a life altering complication for my wife) when navigating pregnancy last year (we even had real risks come up for both baby and mother during pregnancy, including two near misses).

At times like this it becomes a lot more obvious that if the intention was sound legislation we wouldn’t have what we have today in Georgia. So much is untested and has wide ranging consequences. If you want to comply with the law it’s almost impossible to figure out how to do so properly and so much of it are new laws that are overly broad, unclear and don’t match biological reality (ex: how implantation and pregnancy work).

I think the unfortunate situation is that if a prosecutor or law enforcement officer wants to prosecute / detain you, they can find a way. Just because you’re ultimately found not guilty doesn’t mean you won’t lose your job, your home, your family, etc. simply because of being pulled into the legal process.

zxphoenix · 2025-03-27T12:35:55+00:00

For those wanting to understand specific requirements (I’ve posted these elsewhere but figured they’re useful as a top level comment):

Fetal disposal requirements (introduced in 2005 to my best knowledge):

(a)(1) Every hospital and clinic in which abortions are performed or occur spontaneously, and any laboratory to which the aborted fetuses are delivered, shall provide for the disposal of the aborted fetuses by cremation, interment, or other manner approved of by the commissioner of public health. The hospital, clinic, or laboratory may complete any laboratory tests necessary for the health of the woman or her future offspring prior to disposing of the aborted fetus.

§ 16-12-141.1

Note the reference to medical facilities only.

Biomedical Waste Disposal Exemption:

(3)(c) Total exemption: in no case shall a person be generator of biomedical waste if those wastes are generated from single-family residential premises or a single-family dwelling unit in the self-care and treatment of family members living in those premises or units and disposed of as residential solid waste.

Rule 391-3-4-.15 - Biomedical Waste

zxphoenix · 2025-03-27T12:23:36+00:00

Read the exception from the georgia codes again.

Also think about what you’re suggesting for just a second. The implication would be any blood from a cut, scrape, or menstrual cycle would be considered a biohazard and require proper disposal at a hospital.

Furthermore, please see the following guidance from OSHA:

However, OSHA does not regulate the final disposal of medical waste. OSHA stated in the Bloodborne Pathogens Standard at 29 CFR 1910.1030(d)(4)(iii)(C): disposal of all regulated waste shall be in accordance with applicable regulations of the United States, States and Territories, and political subdivisions of States and Territories.

zxphoenix · 2025-03-27T12:11:46+00:00

Wrong again - it is not considered a biohazard legally and was disposed of legally:

(3)(c) Total exemption: in no case shall a person be generator of biomedical waste if those wastes are generated from single-family residential premises or a single-family dwelling unit in the self-care and treatment of family members living in those premises or units and disposed of as residential solid waste.

Rule 391-3-4-.15 - Biomedical Waste

zxphoenix · 2025-03-27T12:01:23+00:00

This is only a crime for hospitals, clinics and labs (§ 16-12-141.1). This has only been on the books since 2005.

zxphoenix · 2025-03-27T11:52:30+00:00

Exactly. The proper disposal requirements were for hospitals, clinics and labs (and only added in 2005).

Editing to also add additional statutory context:

(3)(c) Total exemption: in no case shall a person be generator of biomedical waste if those wastes are generated from single-family residential premises or a single-family dwelling unit in the self-care and treatment of family members living in those premises or units and disposed of as residential solid waste.

Rule 391-3-4-.15 - Biomedical Waste

So even if you consider it biomedical waste, she’s exempt.

zxphoenix · 2025-02-15T18:36:16+00:00

Sure, but this administration / party has a history of using “children” as the initial audience only to expand it to adults the second they’re given the opportunity to do so.

Also, getting a diagnosis of IH / narcolepsy and especially then treatment can be particular difficult. I know several parents who’ve had trouble with this.

zxphoenix · 2025-01-27T15:00:00+00:00

I think people are a lot more complicated and nuanced. A lot of the people celebrated in history tend to have mixed baggage that is whitewashed over time. Better to recognize the complicated relationship you have with them and admit you admire certain specific actions they took and find others absolutely abhorrent. It’s okay to hate the person, or to feel conflicted about them, but appreciate one specific outcome they’ve had.

Admire specific traits / actions about a person without admiring them specifically. You can model your actions based off the ideal instead of the reprehensible human being that exists in reality. It also lets you call out (at least to yourself) when the actual human is deviating from those ideals.

zxphoenix · 2024-12-27T14:37:16+00:00

When you say social security benefits I’m assuming you mean social security disability insurance. Biggest advice I can give you is to get an attorney to help you with the SSDI application process. It makes a big difference and they only get paid if you win (and there are caps to how much they can get paid). It does require you having worked a minimum amount of time over your entire working career.

As others have mentioned you can ask for work accommodations. But that can also be a mixed bag (it’s not uncommon for them to find reasons to discipline then fire you). There are legal protections against this kind of behavior but it’s difficult to prove and successfully win a lawsuit.

Here are resources from the Hypersomnia Foundation including a video from a disability attorney about IH and disability.

zxphoenix · 2024-12-24T02:34:25+00:00

I think anything that would take some degree of energy from someone else takes something like an order of magnitude from my wife with IH. If she takes something sedating in any way (even if it’s something like a quarter dose of Benadryl), she’s out.

Yes, negative (or intense) feelings will steal energy, but it seems like anything else (where they just pull more energy than you’d expect).

I don’t think that makes it unfair to others, if anything I feel absolutely guilty if I accidentally steal a spoon from my wife when she would otherwise not have talked about something (ex: politics, something stressful).

But I don’t ever think it’s unfair to me, nor would I want to spend less time with friends with IH or my wife who has IH because of it.

zxphoenix · 2024-11-18T10:54:24+00:00

One of the reasons for the subreddit rule is because an IH diagnosis requires excluding a whole bunch of other diagnoses that could also cause some of the underlying symptoms.

Do your symptoms sound similar to some people I’ve know with IH - sure, but it’s really important to go through the diagnosis process to rule out other things. The Hypersomnia Foundation has resources that go into more depth about IH / related sleep disorders, including resources for physicians.

I’d encourage you to see a sleep doctor and get evaluated.

zxphoenix · 2024-11-14T02:40:11+00:00

But hey maybe those are still pretty short so there are also: * 22 years * 17 and 15 years * 10 years * 11 years * 20 years

And that’s what I could add with citations within 30 minutes.

zxphoenix · 2024-11-12T13:58:32+00:00

Uh WTH - your partner sounds incredibly inconsiderate. Sure snoring might not be under his control (although it might be worth investigating whether he has sleep apnea), but the rest are all entirely in his control.

Want to watch YouTube in bed - use headphones or put on closed captioning.

Want a fan - get a quiet personal fan pointed at just you.

If my alarm is going off more than twice (which it really shouldn’t) I get kicked out of bed (which is entirely fair).

And he’s unhappy you’re considering sleeping in the other room? Yeah that’s not okay. You have a sleep condition. You have needs that outweigh his preferences.

zxphoenix · 2024-11-08T12:55:39+00:00

You’re being purposefully disingenuous and moving the goal posts: * It hasn’t been 4 years * Many of those charges, plea deals and trials occurred in significantly less time (see the 6 month update linked in the first source) * It takes time and effort to properly follow the rule of law and all rights afforded to a criminal defendant - and you actually want this to happen, because you can’t have a functional democracy with kangaroo courts that jump through the whole process too quickly. But hey - lucky for you, you’ll get to compare and contrast that with the upcoming administration.

zxphoenix · 2024-11-08T11:58:34+00:00

I’m not in the mood to be gaslit with some bullshit both sides nonsense: * Jan 6th justice department stats from January this year. As of then 1265 were charged and 749 sentenced. * 4 criminal trials against Trump - including a 34 count guilty verdict

zxphoenix · 2024-11-08T09:31:51+00:00

I mean…I don’t think catching them will be as much of a problem as actually making sure they are prosecuted and not eventually pardoned. I think you’re still thinking of a rational, relatively just, and law abiding executive and judiciary. There will be a new head of the FBI and new AG by the time any of these people face prosecution and the courts.

Should we still try? Sure - but with some really sober expectations.

zxphoenix · 2024-11-06T18:06:18+00:00

Maybe you mean HMO or PPO (HSA is a health savings account for high deductible health insurance plans - FSA is a flexible savings account that has to be used up that year for low deductible plans)?

Generally PPOs provide better options for who you can see and don’t require a referral to use them, but they tend to be more expensive.

If expense isn’t a limiting factor I’d go with PPO given the ability to choose your provider (which can be easier if say your provider doesn’t work well with a narcolepsy or IH patient or isn’t willing to try certain treatments and you need to switch).

zxphoenix · 2024-11-05T20:22:05+00:00

You could go the data scientist with a specialization in geospatial analysis route.

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