brooke2k
Joined 4 years ago
Joined 4 years ago
- If insurance refuses to cover something, check your insurance site for something called an explanation of benefits for that charge, which should give a clear reason why it was denied. Sometimes though (way more often than it should be) the reason is completely wrong, or vague, or nonexistent, or is just hard to understand, in which case call the insurance and harass them daily until they either pay for it or give you a sane explanation.
- If you go through all of that and they still won't pay, get in contact with whoever made the charge (hospital, lab, doctor, etc), and tell them that your insurance refused to cover it, and that you need to negotiate the price down. This works sometimes. Even when it doesn't work, they can usually get you on some sort of payment plan so that your checking account doesn't go immediately dry.
- In general, get used to spending all your time on the phone calling insurance and doctors trying to get people to take you seriously. This is problematic obviously because you're SICK so generally you're not exactly in a state where you can do that. If you have any friends or family, see if you can enlist them to call people for you. Also, if you can get access to a social worker, sometimes they will be able to help you with calling insurance places and that kind of stuff. If you're inpatient, just ask your nurse for a social worker - at all the hospitals I was in, they had social workers on call for stuff like that.
- Write down on your phone somewhere a bullet list of all of your symptoms, treatments, diagnosis (or attempted diagnoses), etc. You will constantly (and I mean CONSTANTLY) have doctors entering your room who have not even GLANCED at your chart, who have absolutely no idea what's going on, and who will seemingly make all of their decisions based on your answer to the question "so what's going on". So make sure you have a good answer to that, which makes it clear to them that you have a serious problem that is worth taking seriously.
- Adding to that, push each new doctor that comes in for an actual PLAN. Your doctors likely WILL NOT communicate and plan with each other -- treat yourself as the project manager. You are the go-between for everybody. If the neurologist says something, then next time you see the oncologist, make sure they know that the neurologist said that. It is unfortunately your responsibility to lead the team of doctors that cares for you, at least in my experience at a few different hospitals.
- If you have pain, don't be afraid to ask for pain meds, because unless you ask for them, they won't be given to you. Even if you're writhing and moaning in pain, you will either be ignored or given extra-strength tylenol. You have to constantly advocate for yourself and be persistent about getting actual pain medication. Even when they do give you opiates, they will try to give you the smallest possible oral dose unless you specifically tell them "I need this much of this kind, and I need it IV, otherwise it doesn't help enough".
- This includes learning how to use the 0-10 pain scale. If you're like me, your instinct will be to always undershoot your pain number, because yes this is excruciating but I'm sure people who've had full body chemical burns feel far worse than this, so maybe in the grand scheme of things what I'm feeling is just a 5 -- don't do that. The 0-10 pain scale, in practice, is actually a metric of "how much do I need pain medication right now". In my experience, anything from 0-5, even if it really hurts, will not get you real pain medication. 6-7 is like "wow this hurts, it would be nice to get something for the pain", and 8+ is "this is excruciating, I need pain medication right now".
Anyways, good article and I agree with everything there, especially the part about going to a major cancer center instead of your local hospital whenever possible. Just wanted to add some more thoughts from my own experience.
but clearly I'm missing something
But if you want to have enough influence to effectively advocate for changing a rule as impactful as the site-wide notability guidelines, then you'd likely want to spend quite a while volunteering, integrating yourself into the community, and learning a lot about how and why the site rules are what they are.
I think that's a good thing. It means the people who have the influence to make huge decisions like that are deeply familiar with the website and the community, and therefore deeply familiar with the consequences of those decisions.
So I just find it frustrating when people who don't participate in the community whatsoever write inflammatory diatribes on why they think the editing guidelines should be changed because their favorite programming language got marked for deletion.
And it's even more frustrating how, when their handful of drive-by tweets fail to immediately enact sweeping change, they and their followers then start a huge flame war, accusing Wikipedia mods of being "cultural marxists" and "shills for the mainstream media" and etc.
Anyways, my point is -- if you want to change things, try participating in the community rather than shouting slurs at it from the outside.
> Getting the initial code written is not the big deal. For curl, maintaining and polishing the landed code through decades is the real task.
This is the real sticking point for me with vibecoding. In the short term, vibecoding everything might get you something that works. But I have a hard time accepting that in the long-term, maintaining a large and complex codebase is feasible when you haven't actually developed a deep understanding of it.
But maybe that's my bias as someone who considers their job description to be basically "develop a deep understanding of and maintain this large codebase".