Genuine question: what is the point made in the post? I feel like I'm missing something.
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No One Goes There Anymore
251–260 of 322 posts
Re: No One Goes There Anymore
#252This is a touchy subject but with my genetic condition I’m scared to have kids. It sucks having this and I don’t know if I would want to watch my kids suffer through it. But I’m glad my parents did cause life isn’t that bad in the end.
My significant other is in a similar boat. We’re convinced she has a genetic mutation that causes the way she looks. (Fortunately for her, that’s all it does so far) A doctor suspected she has it and so on. We haven’t done genetic testing yet to confirm 100% but it’s something we are considering.
Personally, I would like to have children with her that are related to us. But, it’s hard because her genetic mutation carries some heavy risks that she’s avoided so far that I’m not really on board to take.
We avoid talking about it a bit. She wants children desperately too. She isn’t keen on adoption and wants to experience pregnancy.
For anyone curious: it’s waardenburg syndrome.
Re: No One Goes There Anymore
#253A little investigation led me to https://doreenmichele.blogspot.com/p/me.html The disease appears to be ACF - Atypical Cystic Fibrosis
Now I'm more confused. Why do people "react weirdly" or "strongly" or think she's "some kind of drama queen" when she gives that name? I'm pretty sure my reaction would be to think "I have no idea what that is" and just move on.
For answers to that question, I would refer you to this thread, although the connection might require some pondering to see.
I wonder if the rather esoteric/elusive style of Doreen's post may have been in part to invoke the very phenomenon she seems to be alluding to, by my interpretation of her intended meaning anyways. Even if not, it worked out quite well in the end.
Re: No One Goes There Anymore
#254Earlier quoted context omitted.
I don't buy it, due to first-hand & second-hand experiences of friends and relatives I have in the US. Let me give you one example: my friend(and at the time business partner)'s wife got cancer in the US. It was fairly "mundane"/common cancer that got treated and everything was alright at the end. He was working as a software developer (normal employee, not self-employed - our venture was a side project) with the afo…
> I paid a grand total of ~€500 despite being self-employed at the time (so I only had standard public insurance everyone in Germany gets). IMO, this is a somewhat misleading statement as Germanys public insurance (that everyone can sign up for), costs quite a lot. Normally the employer would cover 50% of the contribution, but as you mentioned being self-employed that could easily be over 800 Euros per month. That do…
If you read down-thread I compare total taxation+insurance costs.
I believe that outside the absolute top couple of % of wage earners German total costs are similar to high-tax US states like California.
Re: No One Goes There Anymore
#255When I see about half my paycheck going to taxes it feels a bit rough. But then I think of stories like this, and how easily it could have been me with an illness requiring expensive medical treatment and possibly preventing me from working regular jobs. And so I pay my tax with pleasure, knowing that if something were to happen to me or my fellow citizen, at least there wouldn't be millions of dollars in hospital bi…
From this side of the Altantic, it looks like the US economy is organized so that the lower working class only earns just enough to live. No wonder they are homeless when illness, disability or bad luck strikes. I am not implying this applies to OP.
I agree with this, but the problem is always framed as a problem of income inequality. We have an income inequality problem for sure, but at the low end of that spectrum, the problem is cost of living.
For the past 50 years, the following things have outpaced generally used inflation indicators: housing, education, health care. Basically, the inflation experienced by poor people has drastically exceeded the inflation experienced by rich people.
Incomes for our lower quantiles is often higher than countries with comparable gdp/capita. But those incomes don't translate to a comparable standard of living.
Re: No One Goes There Anymore
#256Earlier quoted context omitted.
I didn't get a diagnosis until my kids were like 11 and 14, I think. I didn't have to think about that aspect, in part because my first child was the result of failed birth control. I was already married, so I didn't consider having an abortion. But when I was having kids, I was still being treated like I was a hypochondriac . I sometimes refer to my diagnosis as "a better name for my condition than crazy."
Real Talk: no one is trying to kill you for profit. They just don't care about you because you're can't make money for them. It's still bad, but different. You meet a lot of skeptics because no matter how honest or correct you are, without access to a large test population and a way to precisely measure your dozens of tiny ideas that add up to a healthier overall life, it's impossible for an outside observer to disti…
Health insurance companies will try to kill you for profit.
Anyway, I upvoted your comment because I feel that you're giving good, or at least useful, advice. The fact that is is good advice kinda sucks. But that's not your fault. It's just the way it is.
Re: No One Goes There Anymore
#257Genuine question: what is the point made in the post? I feel like I'm missing something.
If your question is influenced by the apparent popularity of this post, in proportion to it's content, the author is a well known long time contributor to HN.
The likely future content of this blog may have more to do with the signal boosting motivation than the content of this first post.
Re: No One Goes There Anymore
#258Re: No One Goes There Anymore
#259It was surprising to see that it might still be difficult for you to get the word out. As far as I'm concerned, you're Doreen from Hackernews, Internet famous. Hope that you do get the word out. Hope things improve. And sorry for the condition that makes it all that much more difficult. Your perspective is valuable, and hope to read more from you.
For what it's worth, I've been visiting Hacker News on a nearly daily basis, on-again and off-again for a few years now. I don't recall hearing the name before.
For what it's worth, so have I... but unlike you, I recognise Doreen's name immediately (in a positive sense, in case that's in doubt).
Re: No One Goes There Anymore
#260Earlier quoted context omitted.
Do you personally find it compelling in a stylistic sense? If I was going to judge the quality of this writing, I don't think I could rate it much higher than "mediocre". Obviously this is my own opinion, but I don't find this compelling in terms of style or substance. Honestly it comes across as more of a rant.
Victimhood is today's Heroism. We're supposed to admire and respect her for her unnamed mystery ailment, and disparage the society around her.
I agree that you describe a trend in our society, but I believe in this case you are misapplying a heuristic. You don't have enough information to declare that this is the intent in this specific case.