I am disabled myself and I have experienced this. But, I am a dual US|EU national.
I actually experienced a very traumatic injury on Thursday, and had to be seen in my city's level 1 trauma unit. I am physically disabled and fell down some steep concrete stairs, (I probably need to use a wheelchair probably from now on.)
I ended up having surgery to repair the injury on Friday.
My pain was under control in the ambulance, but that was it.
I literally screamed nonstop during Thursday, Friday, and Saturday, due to the hospital refusing to give me adequate pain control. My abdominal muscles are still sore and my voice is gone still. When pain management finally came on Monday, they cared more about what medications I could "get outside" the hospital and "what the maximum quantity would be" more than actually controlling my pain.
They didn't even have any pillows for me on the unit to elevate my limb.
The whole experience was extremely traumatic and barbaric. It was reminiscent of a third world country.
Supposedly this is one of the best trauma units in the country, too.
I am done with this country. I cannot do this anymore. It is killing me.
Sorry you experienced that. I understand you intimately for all the good that does. I've been both provider and patient and know how wrong it all is here. I have been done with this country for a long time, but every attempt to stabilize elsewhere was ruined by the damage done to me here as I cannot independently meet the requirements. Some sick irony. Taking away someone's health, in a pay to play society without safety nets, is mostly a death sentence. If I had a way out of here back to Europe that was sustainable I'd take it but the clock is running out on me. Other people are always the one dictating if I get to live or not and I have lost all agency. Opting out of it all is the only power I have left and if I am not careful even that will be denied and more trouble added. The same system that won't help to live will forcibly prevent you from saying "no more". Ah but for an accident of geographical birth. Wrong place and wrong time. I hope you can at least get back to the EU and have a better chance...if that's possible for you. But I also know damage done travels with us as well.
It does ruin everything. I was waiting to leave around summer 2020 due to the ACA decision being released around then, but things are becoming more urgent. This incident sealed the deal for me.
I have 2 rare immune-mediated diseases that affect my peripheral nervous system, plus type 1 diabetes.
I receive SSDI off of both mine and my deceased father's work record, as I was able to prove that I was disabled before the age of 22. I somehow had enough work credits at age 21 to claim off of my own work record, even though I was a university student. I worked like a madman.
I receive 75% of the maximum SSDI payment (due to my father's earnings) and my healthcare costs exceed my social security/SSDI check. Next year, if the ACA is overturned, I will die if I do not leave the US.
People do not realize that social security does not go far if you are unhealthy.
I naturalized by descent when I realized that there was legitimately a remote chance of the ACA being overturned...as in before the lawsuit came in to fruition.
A good place to consult is reddit.com/r/IWantOut but I would not post there as they are ableist as can be and there is a keyboard warrior demographic. Nevertheless, it is a good resource.
I hear you. I was denied all SSDI etc after years of fighting. Credits expired entirely now. I am "too poor" for a subsidized ACA plan. If I was a little MORE poor I could get one but you know how it is balancing things as one change cuts you off of another needed thing. You cannot win.
I've been trying to get out (back out) for a long time. It always went under because of the my health getting worse and family bailing from any support as a result, so I couldn't maintain residency another way. If everything that's happened to me had happened in a country with social systems, which likely wouldn't have since the surgeries that disabled me were profit driven and unneeded, I would at least have a chance to live. I want to live. I am not some emo woe-is-me case. There is just nothing but closed doors in front of me and the place I am now in is closing to me as well. The ONE time in all these years one DID open thanks to someone kind, more went wrong with health and family and I couldn't get through it before it shut. Your life shouldn't depend on one lucky chance from a stranger.
I am really sorry. Also, I am on meds right now which make me self absorbed, so sorry if this comes off the wrong way.
You did nothing wrong. There is way too many high expectations to even get approved for SSDI, like needing to be continuously insured.
It is absolute insanity.
I know you have been doing everything you can. Unfortunately, I have been spending this year making plans for leaving the US with my extremely complicated health stuff.
The only reason why I get by is because I have an extremely supportive family.
To have to rely on the "goodwill" of strangers is a cruel existence.
I know that you are not emo. I know this country is killing people. It is believed that the third leading cause of death in the US is preventable medical errors. Plus, when healthcare costs an arm and a leg too...we really are killing people,
My email is in my profile if you are inclined. I would be interested to know if you have come across ideas I have not. It's usually somewhere from nothing to useless on the advice scale. Then you have to not only deal with disappointment, but people's "offense" at their advice not working as well. I tend to cycle from waking with some desperate hope something will present itself...to becoming despondent and resigned to flip the switch by night, especially the days some new pain or problem presents, but try to get by thinking "just try one more day and hope"...but an artificial limit of days has recently been placed by others so even "one day at a time" indefinitely doesn't work. People can only take so much.
Doctors are afraid to get arrested for prescribing pain meds. The government has injected itself into healthcare as a political response to the media response to the "opioid crisis."
I have an elderly family member (70s) that is treated as a pariah by one of the few pain clinics accepting new patients in the city.
No, the government created the crisis by restricting supply of painkillers people desperately need. Purdue is a nice scapegoat though. Good job playing the same card as the drug warriors ("evil dealers").
Wait, you were talking about the US? I'm kind of surprised, since not being able to get "real painkillers" is one of the talking points I sometimes read about my local (german) system. Probably more focused on over-the-counter drugs, but this obviously also has an impact on what hospitals try to give.
So yeah, you're experience doesn't really fit my worldview, unless this is a hard counter-reaction to the recent opioid-epidemic.
I am disabled myself and I have experienced this. But, I am a dual US|EU national.
I actually experienced a very traumatic injury on Thursday, and had to be seen in my city's level 1 trauma unit. I am physically disabled and fell down some steep concrete stairs, (I probably need to use a wheelchair probably from now on.)
I ended up having surgery to repair the injury on Friday.
My pain was under control in the ambulance, but that was it.
I literally screamed nonstop during Thursday, Friday, and Saturday, due to the hospital refusing to give me adequate pain control. My abdominal muscles are still sore and my voice is gone still. When pain management finally came on Monday, they cared more about what medications I could "get outside" the hospital and "what the maximum quantity would be" more than actually controlling my pain.
They didn't even have any pillows for me on the unit to elevate my limb.
The whole experience was extremely traumatic and barbaric. It was reminiscent of a third world country.
Supposedly this is one of the best trauma units in the country, too.
I am done with this country. I cannot do this anymore. It is killing me.