What is making you happy right now

[Hazir]

In case there might be any doubt; I am happy that your son gets top notch medical care. I'm sorry he actually needs it.

Having that out of the way; how do you estimate the chances of getting anything remotely like the care your son gets of a child with a similar condition, but with parents significantly further down the socioeconomic ladder? Is this really just about where you live?

[Aimless]

tbf he lives in a very weird place even by the standards of his weird city

[wiggin]

Having that out of the way; how do you estimate the chances of getting anything remotely like the care your son gets of a child with a similar condition, but with parents significantly further down the socioeconomic ladder? Is this really just about where you live?

I think this is a great question! It's definitely both. So it's 100% true that a reasonably affluent person (by which I mean having thousands of dollars of disposable income to spend on healthcare + decent insurance) in many other places in the US (and elsewhere) would not be able to get the same kind of care that my son has received. Obviously location matters - the sheer density of clinician researchers and medical research in my region is just hard to replicate outside of a limited number of large cities, so it would at a minimum take much longer to arrive at a diagnosis and to find an appropriate treatment.

But it's also not just location, of course. There aren't any fundamental access issues with the providers we have used - all of our specialists have been hospitalists in the large hospital systems used across socioeconomic strata here in Massachusetts (i.e. no private practice specialists with crazy waitlists you need $$ or pull to get access to). So in that respect, there's no unique socioeconomic filter that would have given us a better outcome. However, there are two big factors that gave us a big lift.

The first is our ability to pay for the various diagnostic procedures. Even with pretty good insurance, the various scopes, office visits, etc. have cost of thousands of dollars out of pocket. Since poorer people either have crappy or no insurance, and little spare cash to spend, they would likely have had to be more thoughtful about which diagnostic procedures they agreed to, and might have opted for conservative approaches (e.g. diet elimination without diagnosis). Perfect example: our first major diagnostic procedure was a 'triple scope', which involved a truly ridiculous number of specialists in the room at the same time. The benefit of such a procedure is it allows you to use a single procedure/anesthesia to answer lots of questions about nonspecific symptoms, and it quickly eliminated many dead ends and allowed us to focus on the putative diagnosis. But it ain't cheap, as you can imagine. It wasn't an access issue - this was standard of care at the major hospital we were using - but it most definitely could have been a price issue. Furthermore, the therapy we will be trying is going to be quite expensive as well, once it's full on the market (list price in the tens of thousands per year, indefinitely). But with good insurance, the out of pocket will be manageable... without insurance, it would be challenging even for a reasonably well-off family like ours.

The second and less obvious factor would be how seriously providers would have taken our concerns. We came with a super nonspecific complaint from a two year old who was not able to clearly articulate his symptoms. Every provider we worked with took our reported history at face value and treated it as a very serious issue to be addressed - even though we didn't (yet) have evidence of inadequate weight gain/etc. that can be independently verified. There is ample evidence that physicians do not always treat every patient the same way (especially stratified by race and gender). It is easy to imagine that someone coming from a different background would not have had their complaints taken as seriously by the healthcare system, which would have delayed diagnosis and treatment, with possible deleterious effects. We present as very 'believable' to physicians - my wife and I dress and talk like professionals, we both are quite familiar with medical terminology and technologies, and present detailed histories with appropriate evidence and caveats. Our complaints are no more or less serious than a similar family coming in with a different background, but others might get a more skeptical hearing.

So, yes - I am fortunate that cost has not limited the speed or type of care we have been receiving, and very fortunate that our concerns are treated as 'real' by the medical establishment. But even beyond those advantages, we probably wouldn't have had as rapid or fortuitous of an experience in most other regions of the US.

[Hazir]

Thanks for the very elaborate answer.

[wiggin]

By now you should know, if there's one thing I'm good at it's elaborate answers.

[Hazir]

If this goes on for much longer this belongs in messing with your groove topic ; but so far here is just fine. After coming back from my vacation this is the second day I can't work.

A system central to the work I do is having extreme capacity issues. And it pretty much is impossible to do any secundary work because that same system holds the key to identifying relevant documents. I'm literally reduced to Netflix and chill until the tech people do their magic.

Series finale of Better Call Saul it is then.

[Loki]

Someone needs to google the meaning of "Netflix and chill".

[Flixy]

Someone needs to google the meaning of "Netflix and chill".

Maybe Hazir is doing exactly that. Gotta do something to kill the time

[Loki]

That would be hard to explain to the bosses.

[Aimless]

That would be hard to explain to the bosses.

It's europe bro

[Hazir]

Someone needs to google the meaning of "Netflix and chill".

I know the meaning.

Also, I work from home.

[rille]

I wanted an off-grid computer at work so someone just gave me a new dell with a new i9 and rtx a5000 in it.
I have no idea what to use that gpu for but it is shiny for a laptop.

[Aimless]

I wanted an off-grid computer at work so someone just gave me a new dell with a new i9 and rtx a5000 in it.
I have no idea what to use that gpu for but it is shiny for a laptop.

Off-grid?!

[rille]

Off-grid?!

Without company bloat etc.

[wiggin]

In case anyone thought you'd get respect if you get a PhD ... Last night my son was bawling and demanding that a doctor give him his injection. When my wife suggested that I can do it since I'm a doctor, he immediately responded (in between sobs): "He's not a real doctor, he's a PRETEND doctor!"

Ouch.

[Loki]

Someone's voting Republican at the school mock election.

[wiggin]

I didn't ask what he thought about Dr. Biden.

[Loki]

Let's just hope he doesn't have a schoolmate named Brandon.

[Dreadnaught]

The fact that I can play CounterStrike through a browser is a delight.

https://play-cs.com/

[Nessus]

In case anyone thought you'd get respect if you get a PhD ... Last night my son was bawling and demanding that a doctor give him his injection. When my wife suggested that I can do it since I'm a doctor, he immediately responded (in between sobs): "He's not a real doctor, he's a PRETEND doctor!"

Ouch.

Your Erdös number is not the figure itself, it is the trappings it awards you with.

Which, as you point out, are shit all

[Kazuha Vinland]

The harshness of being a newly appointed manager, is starting to wear off, and things are finally starting to align a bit more.

6 months or so I ago, I was called to the office by the store manager, asked to take a senior management position of having responsibility of 24 employees. The first 6 months I felt as though I have been tolerated due to my knowledge and expertise within our branch of retail, but simultaneously felt that nobody has been inspired by me, nor really had a heartfelt connection. I felt as if I were held accountable for every mistake I made, while all the time and effort spent extra to make up for it, felt invisible to most. It hit hard when one employee told me straight up that he felt like I did nothing, after having worked 12+ hour shifts for nearly a month straight. All in all, I just felt incredibly unaccomplished.

Finally today, I for the first time felt like things just started to click. Conversations have been going well, results have blossomed despite everything going on, and I am allowing myself to be more a human version of a leader. I feel calm and balanced, whereas a month ago I considered quitting with no financial back-up due to high stress.

Also happy this place is still alive!

[wiggin]

My daughter just independently came up with the idea of carbon capture and storage while daydreaming about how to fix carbon emissions. Now, granted, she was trying to think about how to eliminate CO2 emissions from human respiration by advent of breathing out into a paper bag and 'somehow burying it or something?'. But I'm not sure if anyone else has a much better idea of how to do CCS, so I'm giving her full marks.

Pretty solid for a seven year old, I was legit impressed and tried to figure out where she'd heard of the idea. As far as I can tell, she just thought it up.

[Ominous Gamer]

Survived the family vacation through the Carribean. Finishing it off with a day at the Kennedy Space Center.

[Aimless]

Picking up our daughter from daycare. As we approach the gate, from the dark playground, a (tiny) shadowy figure—perched atop a mound of snow twice her height—yells at us,

"UNA MATTINA!! MI SONO ALZATO!
O BELLA CIAO BELLA CIAO BELLA CIAO CIAO CIAO!!
UNA MATTINA!! MI SONO ALZATO!
E HO TROVATO L'INVASOR!!!

O PARTIGIANO!! PORTAMI VIA!
O BELLA CIAO BELLA CIAO BELLA CIAO CIAO CIAO!!
O PARTIGIANO!! PORTAMI VIA!
CHÉ MI SENTO DI MORIR!!!"

Where she leads, we will follow

[wiggin]

My four year old picked out some early reader phonics books at the library and is supposed to bring them to show and tell today to tell the class about his book. It was a set of Lego Batman stories (very simple) - he's a big fan of Batman in theory, though has no idea of the underlying story.

I asked him what he was going to tell the class, and he said that he was going to say Batman is the biggest meanie in the whole world. Surprised, I asked him to elaborate. His answer? "He always uses his hands, not his words! Super mean."

I think we're doing okay with him, so far.

[GGT]

Kids that age are so damn cute! My oldest son used to wear a pink towel as a cape, with a potato chip clip at his neck, to pretend he was Superman. In public. Thanks for triggering good memories, wiggin

[Nessus]

I don't want to start a new thread, so HAPPY BIRTHDAY Flixy!

[Aimless]

My daughter has come up with a plan to set out large bowls of blood candy for the mosquitoes this summer so that they won't bite her or her mum. My wife pointed out that the blood might go bad, so she came up with an alternate plan to serve the blood from little plastic bags, through tiny lil tubes. We're, uh, still not clear on whose blood she plans to use for this scheme

[Loki]

You probably have the most...plus socialism.

[Aimless]

I beg to differ, my wife is very pregnant atm but I am def. more expendable