Medicaid as it exists denies a lot of people for various reasons. It has poor coverage and providers aren't obligated to take it so many do not. Simply closing the AHCA/Medicaid gap in the red states who refused to do so years ago isn't going to change much overall and is quite a hollow "victory" for those states.
I know...and thank you. I just wanted to be clear I am appreciative of empathetic and kind people. There is enough victim blaming and defensiveness from the masses in the world as it is...I don' want to alienate good people nor harm the acceptance and understanding for others in my situation by sounding ungrateful. For example I remember how grumpy and mean most older diabetics I worked with were and it wasn't because they were bad people, it's because they were worn out from suffering. But to most people they were just "jerks" who were choosing to be jerks.
That's not something I feel would help me in any way to get into publicly. It's multiple very difficult issues with no cure and little understanding even (legitimate and diagnosed...not quackwatch sort of stuff...just not common nor cared about much overall), mostly iatrogenic, I have done all the normal stuff you are supposed to, a lot of alternative stuff, and have never once gotten any useful advice from explaining it all in detail that helped. At best it's just "wow that really sucks and isn't fair". At worst it's "if so much bad keeps happening it must be you". I don't need any more surgery, lab test, medication, diet, or yoga suggestions. I just need stability so I can cope as best as possible within my limits.
While there is a lot of truth in what you say from my experience as well, and I can be defensive from all the disappointment and ineffective advice and often outright attack and blame over the years, I try to remember people mostly DO mean well and you never know when the right thing might hit. My only real chance in all these years came from a stranger speaking up. I've gotten some lovely messages of emotional support from a handful of people before as well. I'd rather people speak up than not personally...but yeah an effective solution would be ideal. I feel I am just too far in a hole for any standard ideas to work. If I was in a strongly social nation I'd be getting assistance no question. I can't survive in the Thunderdome in my situation.
I apologize for any defensiveness. I am exhausted and tired of being in pain, poor, and alone. I am often criticized and blamed and it conditions you to expect bad from people. I try to stay aware many people mean well but sometimes I overreact. I avoided asking for help for a long time for the pride reasons you mentioned...hoping I could find a way...but once it became clear that wasn't going to happen and I did reach out it was denial and silence at every turn. In all these years only one person, a complete stranger, offered any real path, and like some perfect game some trickster god would design that path was blocked by outside forces as I took the first step on it. Seeing every system you trusted and all the people who promised you support deny you...and worse BLAME you...is soul crushing.
It's depressing (ha!) how accurate this cynical sounding stuff is. I have had to be really cautious as my usually avoidant and blaming family have threatened to try and have me locked up by exaggerating things when I have told them how severely depressed I am as a result of my situation. They don't care to help in any practical way and ignore me in general. They know I have no financial stability. They know taking such action would put me in five to six figure unrecoverable debt here. It's the same with "mental health providers". You cannot be open without fear of debt and losing more agency. It's why I occasionally rant online as I have no safe space irl. My mental issues are entirely side effects of my physical and financial issues...but those root problems are avoided.
I don't have a financial strain bankruptcy would fix. I cannot walk away from current needs for medical care, housing, food etc. I am getting worse not better which equals more needs and cost with less to no resources. You cannot sign up for a post paid life in America and just ignore the costs. The featured article shows how that debt snowballs into worse issues. There won't be seven years in my future at this rate and no means to start over now let lone then. It's not a hiccup to get over nor some administrative issue to be worked around. The amount of "Why don't you just...." that I have heard over the years robs me of all hope. It's usually well meant and not malicious...but its never actionable or realistic and rather based in what people think it SHOULD work like or how it will be for them if they need it.
I've been there and been that digital nomad. I have lived in cheaper countries. I've taught English. Those things sound romantic and if you are healthy and have special skills you can have a good life. If you are not healthy and are competing with every other gig worker who IS and is half your age, and every other native speaker, hustling in the grind every day it's not sustainable. It was quite hard even when things weren't as bad as now. It's exhausting and doesn't (in most cases) give you any of the stability,immigration requirements, access to systems, consistency you need to live when you aren't able to sleep on floors and rough life. It sounds nice and I know the advice is well meant. It's just not like people imagine in context.
I have. In fact the once in a lifetime offer I got from a member here, the only real help in all these years, was to work remotely and live in Europe. My only real friends are there and my previous doctors there were wonderful so that is the goal. But a (as usual) complicated health issue made doing that job and that time impossible for me and I hate every day that it might have been the last hope. My health keeps blocking things. I don't even know what I could do to earn at this point that I would be sure of being able to sustain. I cannot depend on my body for consistency unless that consistency is pain and weakness at varying levels and that's incompatible with your ability to live being linked with your ability to use said body consistently to work in trade for cash. Every time I invest in an idea with energy and money something else happens to crush it. I'd need years of physical, financial, and mental stability to even begin to recover some life and simply cannot start entirely over with no help like one can when they are young and healthy. I have no bootstraps in any sense of the word to pull on.
So many people think judges are some elevated ethical beings like we imagine as kids. They are mostly lawyers who are appointed or elected politically. The administrative law judge for my social assistance applications was hostile and overtly political and I knew I was screwed in the hearing. To make it worse the appeal was sent right back to HIM for review. Of course he rejected the appeal and upheld his decision. One of those things everyone who I tell responds like its not possible...but it was...and nobody cared. I lost all hope in the systems after that experience.
I've been trying to move back abroad since I returned to the USA. It's not as easy as people think in the best of times to immigrate, let alone when you are in such bad shape all around. No place takes broken and relatively broke people. Believe me I'd have been gone years ago if I could have managed it. I've thought about extreme ideas like asylum but my research shows it's never granted to people from such countries as mine and for such reasons. The system is taxed enough with war refugees and people even worse off. I'd happily trade passports with anyone who thinks this is the place to be. There is just not a clear path to a sustainable life anywhere now.
I appreciate the advice. I may not have been clear in my rant but I am not in legal debt presently. If it were medical debt from a recoverable position and with support it would be a different story. I have skirted it by paying up front from savings or not seeking/getting care if it cost too much (a decision many have to make here) as I know in my condition and situation I would never recover once that happens. I will end things before that if faced with it. But conditions keep worsening making me fear that outcome. I was denied any governmental assistance even with lawyers and years of effort and my partial medical retirement pension has no medical insurance or benefits and isn't even enough for all needs itself, let alone extreme medical costs. I have been living with hyper-conservative family who have made things quite difficult for me, blaming me because my situation flies in the face of their beliefs, and that is coming to and end soon as I am blamed for their pre-existing 4th marriage issues being a convenient target.
Basically once you are removed from the ability to control and maintain independent life, to the normal degree most can, and there is no support network or safety net to rely on, you are faced with hits from every side which amplify each other and no matter how hard you try and what you do the exponential weight is crushing. There just wasn't enough help from family or systems when it would have enabled me to recover, and now I will never recover and there is even less help, meaning none, to survive when you are dependent. Likely since I have to move, I will just pack up and go abroad by end of year with whats left, rent a tiny flat for as long as I can, and hope a miracle takes place somehow before I am forced to flip the switch off. I don't have the funds, health, or support to survive anywhere legally or continuously alone...but I refuse for my last breaths to be here. Sorry for the anger...cathartic dumping as I have no real ear to bend regularly. It's been a rough few decades ;)
I lived abroad in the past. Had a much better life and healthcare. But now that savings is so small and my health so limited I cannot just "move". I wouldn't be able to sustain myself financially. There are immigration requirements I cannot meet. I would love nothing more to leave. But even then things are so bad with pain and health I would never have a good life, maybe just a survivable one in a more comfortable environment for me. But again, the consequences of what was done to me here has taken away the ability to immigrate as per usual. An amazing member of this site once offered to help me with his company abroad and I fought to make that happen but more and more health and financial issues kept hitting me and I couldn't make it happen. When even such an accommodative thing won't work out it robs you of all hope. Occasional rants, when energy and pain allows (the real killer), seem my only attribute at this point. The dying gasps of an angry man.
My life was ruined by badly done, and even worse ultimately unneeded surgery. That privilege initially cost me many thousands, along with career and insurance going away, and the subsequent struggle to survive since has cost multiples of that. My entire future billed away. For a time I was able to avoid collectors because of a significant savings a frugal life had left me, but as time goes on you have to choose between medical care and other basic needs unless you want to go into a deep financial hole at a time you have MORE financial need like the people in this article. As a former provider, as a patient advocate and activist, and now as a person on the edge, I never saw anyone get out of that hole and it terrifies me every single day.
I am constantly getting third and fourth party bills for huge amounts re things I did not consent to be sent away or billed externally. That's AFTER asking up front AND paying huge amounts for the primary service up front. These things come many months later and I can see one easily getting lost or not sent properly and me ending up in a massive legal battle over debt and summary judgements behind my back. Even with paranoid checking of old accounts and services they continue to mess it up and debts show up later. I was ruined by this country's medical business and ultimately it's going to be the cause of my death as I am at the limit of what I can handle in all regards. I tried to get out of the country for good to places I have lived and can get better healthcare, and have at least some quality of life with my remaining health and years, but ironically since I am so broken because of this experience it severely limits my options. I feel trapped and hopeless.
I surmised in my case had to do with life experiences and emotional growth allowing me to see things differently, but maybe that's self righteous nonsense. All I know is I can enjoy a lot more art than I used to and I am glad for it.
I agree it comes across as incredibly disingenuous and unnatural. It's like a salesperson saying your name over and over. It's not normal and FEELS like a performance to elicit a response.
I don't know why reasonable and honest communication is so hard for so many. You can speak plainly but kindly and be genuine in the process. Nobody likes being or feeling like they are being manipulated and nobody who uses "techniques" to do this is not obvious.
I would love to see some of his stuff up close. I live in rural nowhere middle Murica so it's not accessible. I have heard it's pretty amazing to see how big they truly are. Nothing is as good as in person. I recall seeing the Mona Lisa in person later in life and being shocked at how small it was, and turning around and seeing how massive The Wedding Feast at Cana was. It completely...sorry for this...reframes your impression of things relative to books and photos. I envy people who live in places with so much culture accessible.
I don't know if it's the same for everyone, but I know with age and I hope "maturity" I appreciate many more forms of art. Things I didn't have the life experience or emotional depth to grasp when I was younger can deeply impact me now. An example would be Mark Rothko's paintings. I would have said "pfft anyone can do that...just some stripes or blocks" when I was a kid, and probably did, but have recently rediscovered his work and absolutely love it. Same with a lot of poetry as you mentioned. I really regret not having more openness and ability to grasp these things before. I really wish I had more health and life stability, and the resultant time and means to explore and experience creative things.
What I don't understand is how those who choose profits over people, or do other such provably horrible things, can then stand up and say they are not doing said thing everyone can see and record them doing. I don't understand what they expect the lies to accomplish over just saying nothing. Your actions prove your character, not words. Do they think people don't notice? Do they really think denial makes the lie a truth or makes it ok? I'd be eaten up inside with anxiety and stress if I did something like that as my conscience chewed at me. Do they not have these feelings?
* I wish people who downvoted would have to put their name with the downvote and explain why. The hit and run "wrong" unaccountable nature of them in any forum bothers me. It's made it too easy for people to just jab at you without consequence and treats people like they aren't other people but rather enemies to bury in grey.
"There must be some detail not reported to the public that made it make sense."
Is something people say over and over to try NOT to accept bad things happen a lot to innocent people. It's not always in bad faith and I am not saying it is for you (though it increasingly IS online especially), since we are generally taught as long as we are "good" that it will all be ok and that authority are the good guys. But real life proves that not to be the case much of the time and this disconnect is hard for people to accept so they say things like the above...blame victims...call it fake news etc.
I use it in the distant past for language and photography socializing in a big capital city. I looked not long ago and most groups were now tech based that were clearly startup pitches and other "business" related things instead of cultural and social. Everything seems to get ruined by people trying to squeeze money out of it like the internet in general. I was just thinking today for some reason about when Omegle started and it was cool talking to normal people all over. Less than a year later it was overrun with scammers, spam for websites, and other nonsense. Skype is another example even further back. Everything that gets any attention ends up like this...twisted and ruined for profits. Has really ruined my faith in anything and anyone at this point because it all just gets gobbled up in pursuit of riches.
I will not likely be around much longer and there seems to be no way to ensure my remains are used for good or just flushed and not lining someone's pocket. You cannot even just be disposed of...you have to pay four figures at least just for a simple cremation where someone profits from just burning you up. I cannot even escape capitalism's nonsense in death. I had my end of life documents made up not long ago and had noted scientific donation as my preference, but after this article and looking into it more, I don't want some greedy jerkwad selling my bits. My life was ruined by greed and people choosing profits over life...and I hate the idea of those same sort of people "winning" in my death.
It's so frustrating to see people deny truths because they don't like them. I know what you say to be true. I have experienced it and have seen many other victims of medical malpractice experience it. Money always wins and doctors and their insurance companies lobby for laws and establish facilities in areas with a more friendly jury pool (higher financial classes and peers). But I constantly hear how "people are just out for a payday" and how "easy" it is to sue and win from people who have no idea. Medical mistakes are the THIRD leading cause of death. They ruined my life. But every time the topic comes up and people speak about it like you did they are downvoted, ignored, dismissed. The same as the victims. People are just terrible so much of the time. No empathy or ethical/moral center.
Seeing how many people prioritize fashion over function...in this topic, and life in general, depresses me. Calibre works very well and you have people saying they "can't" use it because it's not pretty enough. It's one guy, does SO much, and it's free. I don't care what it looks like. It's amazing.
Off topic but can you expound? I was "floxxed" with joint pain etc long ago...but have never heard of the caffeine related effects. Is it all caffeine? ie chocolate/pills too?
I have done that, repeatedly over many decades, and most of them have made me worse to the point nothing can be done IF you find a good one. You can't be an expert in everything and often learn someone is bad too late. Since I live in a country where healthcare is a profit driven business I have been priced out of "trying another" as a result of the damage done and loss of life and income. I cannot afford to keep trying new ones until I find an honest and competent one in most cases. Not at the US prices.
I also went through that with dentists years back and had several in a row insisting I needed lots of expensive work but I kept spending on more opinions as it was out of line with my historical dental health. I lucked into one that confirmed I did not need any of that, proved why to my satisfaction, and said its a real problem in the business and I have been with them ever since.
Friend married a Russian cardiac surgeon, one with 20 years of experience, brilliant woman. She was not allowed to practice in the US without years of redoing residency and entry level exams and loads of money. She ended up changing careers as it was so much bother. Patients ended up losing out on a caring and bright provider.
I understand what you are going through and am sorry I cannot solve it for all of us in this boat. I try my best not to dwell in the past and be angry, but its so hard when the past's errors and slights affect your quality of life every day.
I went through immunotherapy several years ago, for an iatrogenically induced issue which angers me more, and I think it permanently damaged me. I was quite sick for a while after and have never felt "the same" as before. I know that's vague and easily dismissed but it's as if the side effects of the treatment never went away. I also just spent months and a LOT of money on multiple biopsies apropos of the post's title, one of which got infected and created a whole other level of pain, stress, and cost, for a misdiagnoses. I never needed to be cut up and infected. This happened to me long ago in a more severe way with surgery as well that disabled me. Misdiagnosed by multiple doctors, spent tens of thousands, worse off. I would have had a much higher quality of life overall had I never gone to a doctor in this country. They have never gotten it right from small to big issues, and ruined my life in the process. I guess I need to just learn my lesson that the system can never be trusted here. But it's hard when you have pain or problems and want a solution. In my professional and personal experience the potential negative outcomes are always massively underplayed to patients. Medical errors/misdiagnoses are the THIRD leading cause of death in the USA. If I had been properly informed about any of the big issues I suffered I would have never agreed to "treatment" and better off for it.