• HubertManne@moist.catsweat.com
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    6 days ago

    It actually took me awhile to respond because I just have to think about this stuff all the time and I sorta get sick of associating with it more than I have to. This is going to be long as many of these responses are and im going to stick to generalities and give multiple paragraph parts.

    Most all of this is with my wife and I want to begin with a bit of the generational perspective. He father was a boomer and one of those curmudgeonly misogynists that folks may have known in their lives. Now he was a single income provider but he talked about how originally, before they controlled for it, double income folks were both had insurance could put in for reimbursement from both providers. So like 80% back from both and folks could basically scam a profit from their healthcare costs and get 60% of it keep. I bring this up just to get a feel for how much things have changed.

    So we have some idea that doctors have told him that she a variety of things that should be looked into as she grew up but she was a child and is not sure what all those were but she did know her father did not want the expense so did not follow up. This was a man that had enough to pay for college for his kids if he wanted but didn’t (her grades were very good btw) and to boot he kept listing her as a dependent after she moved out and she was to mousey (its not quite the right word but its a thing with how he was and how she was raised and how her brain reacted to it). This is just more setup for her life.

    So my generation had this thing called insurance roulete which meant you did not have insurance and hoped for the best. Pretty much everyone did that after their parents unless they got a job with insurance because what you could get would be emergency only. During the time before we got together she was in a bad auto accident with a truck where her car was accordianed. In some ways it is amazing she outwardly for a time did not show much damage but there was damage. She also suffered some brutal assaults. Each time she really got just minimum care mostly at home and relied on just being able to get over it.

    Now we get to the erra where we met and eventually got married. She now has insurance from my work but many, many issues. Eventually we resign ourselves to paying maximum out of pocket every year. I am in a weird situation which is very akin to being a single parent with a disabled child. She can do some house work and such but is limited. I am desperately afraid to lose insurance. She has gotten mad at me for things like as she says “stepping over her while laying messed up on the floor to go to work”. She later apologizes because she does get that I can’t lose my jobs even though I do ultimately (generational reality of serial employment/unemployment). These things come back around as her and I go through continous bouts of depression around her health, the us healthcare system we deal with, and our financials. We have to kill ourselves with belt tightening to keep cobra going (a costly option to keep insurance between jobs in the US). We have had multiple denials that we have fought successfully but it has taken over a year of perseverance and is a source of continous stress. These are six figure amounts. Obama care was huge because of getting rid of pre-existing conditions and the biden administration’s no surprise billing has been a godsend to. Im currently unemployed and my monthly healthcare costs are over 2k a month now. An amount that unemployment just barely covers so pretty much all other costs come from savings.

    Ok as for her health issues. She needs back surgery. Both lower and upper. This is a big thing but we have avoided it. We know it has to be done but what you have to realize is all her medical things have never gone typically. She almost always has “complications”. This surgery is one that people will say don’t do it till you are in a wheelchair because it at its best is not great. This is one of those things we have over our heads. She has had a knee re-alignment. It never went back to normal function. She had a hip replacement with two or three revisions. I can’t remember how many but she had mersa and a pick line and it was enough to have the CDC involved in the middle of covid. Her other hip needs to be replaced but we are putting it off. She had growths in her uterus and got an abilation. They are currently doing biospsies to see if more needs to be done now which is years later. She has a growth on her thyroid and is hypothyroid and has to take thyroid supplement but she reacts to the artificial and we have to continually get exceptions to get animal sourced. [I am at the character length and will have to continue this on a reply to itself.]

    • HubertManne@moist.catsweat.com
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      6 days ago

      She had a tumor on the membrane that surrounds the brain. It was taken out surgically. Initially they were going to do it really minimally but they found it was grown into her skull and had to cut it out and giver her a metal plate. Later some came back and they did this thing called a gamma knife because the physical surgery had resulted in bleeding in the head. Its an acceptable amount so they have not gone back in. We have learned a lot about acceptable amounts of things. She has allergies and is trying shots after years of using over the counters. She has had trouble sleeping and some studies shows she stopped breathing at night but it was close to the cutoff for acceptable amount (eyup). She had a procedure to make more space in her nasal cavity but she had complications and went to the emergency room. She now has a cpap now and according to it she now just has a couple of stop breathing occurences in the night. Im likely forgetting things and there are others that we have not tackled. You see me mentioning holding off and that is because we have to make decisions about what is most important to tackle. Its a fact of life for us. She has neurapathy and goes regularly to a chiro that helps with that and some of her other things. Insurance does not cover PRP but it works for her so we pay for that out of pocket mostly for her knee which I mentioned the surgery did not bring her back to normal on. Ironically we pay to prevent the insurance from having to pay for a far more expensive surgery. They will cover injecting other things into the knee but only if a drug company makes it. My wife can function for a limited time span. She has to stay in bed and she can be out for an hour if she gets back and no issues. two hours and she sorta has to recover. More hours and the recovery will take longer and if she pushes herself to hard (which I continually try to get her not to do but she can be stubborn) it will be days. Outside of laying down she can’t do anything else for two long. sit to long, stand to long, walk to long. When she is up she needs to keep her activity varied. Our vehicle we have bought because of how well it works for her sitting (she can sit in some chairs longer than others and she can stand longer if she has a pad and such) and for her to get into and out of the vehicle. Its a dodge grand caravan and unfortunately dodge has replaced it with the pacifica and those chairs are not as good so we have yet to locate an eventual new best option. If we do a surgery she will be much worse and I will have to care for her more but at the same time my time off is limited and I can’t lose my job/insurance.

      Ok sorta a final thing but again you see our hold off thing. TV shows love to display this fantasy in medicine were the doctors realize all these things have an underlying issue that they nerd out on an investigate the mystery and find it and solve it and now the patient is ok. Nothing could be further from the truth. The insurance companies will only compensate for specific things and they can only spend a limited amout of time on it. This means that every symptom basically has to be dealt with separately and any type of holistic care is out the window. This is why we have to decide at each point in time what to tackle. My wife spends most of her time trying to figure out what to do given the system we are in. I spend a fair amount helping her when needed but much more often than that dealing with the finances around the healthcare. We sorta split dealing with authorizations and denails and such. She was suffocating in her sleep and the cpap seems to have alleviated that so she is getting her uterus biopsy and once that is dealt with we will likely go back to. back or hip. back or hip. Meanwhile btw I am aging and I try my best not to neglect my health but its not easy to do what im supposed to do. Im not blowing it off but I know I don’t do it was well as I should and I know we are absolutely screwed if I go down.

      This is the reality of the us healthcare system.

  • TachyonTele@lemm.ee
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    8 days ago

    I had to spend the weekend in the hospital. At somepoint I woke up and there was a lady asking me about my insurance. I didn’t have any. She asked me what insurance would I like? I was pretty out of it, and just said “whichever one you would want to have”.

    Best thing that’s happened to me. That nice lady looked out for me and got me really good insurance for free. No copays or anything. Every thing is free for me. Tests, medication, extra things, cabs, eye dental everything. I have yet to find anything it doesn’t cover. And im at various dr appointments every week.

    I was really lucky she was there for me.

    • AnarchistArtificer@slrpnk.net
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      8 days ago

      I’m glad to hear that. It makes me think of a few times when I have been helped by someone who is a small cog in the machine showing me some compassion

      • TachyonTele@lemm.ee
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        8 days ago

        Nurses for the most part have always been very nice in my experience. I don’t know if that lady was a nurse or what, but it fits with all the other nurses in my area.

  • PhilipTheBucket@ponder.cat
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    8 days ago

    Family had big surgery, had excellent insurance, went to rehab, something went wrong and his bones started coming apart and he reported agonizing pain and popping sounds in his reconstructed bones, and they ignored him and told him it was normal. By the time they realized it was a real issue, his whole anatomy was falling apart and he had to have multiple surgeries all the way across the state to fix it, traveling back and forth while not in great shape, and still isn’t okay and probably will not be again. I got in a shouting match with one of the nurses that tried to tell me it was basically his fault.

    Other family member had major abdominal surgery, they sent her home after and only after she collapsed at home and came back did they realize that nothing they’d done the first time had actually addressed what was causing the problem. They did surgery again, this time fixing the actual issue, and then sent her to rehab for a few days and then back home before she could walk again. If I or someone hadn’t been around to help her out she probably would have starved to death or something.

    Friend had a fairly minor health condition, had insurance, went to the doctor, insurance refused to pay the claim for basically no reason, wound up with bill collectors chasing her for thousands of dollars after she had paid out-of-pocket to have health insurance. Lawyer said there’s not much to do that wouldn’t cost more than they wanted to extract from her. Sorry.

    I went to the doctor evading the whole system, just said that I had something wrong with me and wanted it checked by a specialist without waiting six months for a referral and wanted to pay for the visit. They said fine and quoted a price, I said fine. A lab sent me a separate bill for the lab work which the office hadn’t told me about, I called the office to ask about it, they said lol good luck.

    There really is no way out, other than not to have health issues.

    • TurtlePower@lemm.ee
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      8 days ago

      Oh, there’s a way out, but we’re not allowed to say it. Pray to St. Luigi for guidance…

      • OpenStars@discuss.onlineM
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        7 days ago

        All they’ll do is make sure to make even more profits to cover the cost of a bodyguard next time.

        Even if you were right though and it did work, will someone simply move on to the next target? and the next? and the next? Negotiations with such “terrorist” activities (literally: with the design to inspire fear in the minds of the recipient) usually never ends well… b/c even if you mean well, the next person seeing that and following along does not. i.e. where does it end?

        It opens the floodgates to a breakdown of law & order in society. And for the sake of argument let’s say that’s a good thing: what then? Who is prepared to build back up a new & better one - especially against the onslaught of literal kids making ghost guns and having learned that Might Makes Right, goes around vigilante-justice killing anyone who offended them, e.g. the person who most recently dumped them? (how dare they, don’t they know that i’M sUcH a NiCe GuY!?)

        It’s short-term thinking at best. Also: I don’t see how “healthcare” would result from any of this?

        But you are right: we aren’t allowed to say much here, on Discuss.Online. The acronym agencies are watching us right now, and moreover that’s just not what this instance is all about - there too, if someone wants to build something “better”, like a community where deeper discussions could be had, then someone needs to step up and actually do it. I’d add a link to it in the sidebar fwiw.

          • OpenStars@discuss.onlineM
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            6 days ago

            I asked in the Matrix chat, especially for @m_f@midwest.social’s opinion about adding that to the sidebar.

            If you come up with any others that may look better suited, please do let us know!?:-)

      • PhilipTheBucket@ponder.cat
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        8 days ago

        I don’t think shooting executives is actually going to improve the healthcare, though.

        Almost every movement that started randomly assassinating people from among the enemy side in order to reform civil society wound up making things quite a bit worse, in the long run.

        • TurtlePower@lemm.ee
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          8 days ago

          Yeah, randomly. This isn’t random, and needs to go beyond just CEOs. There are entire boards that make these decisions to murder us. Like potato chips, you can’t stop with just one. They don’t like us murdering them? Then they need to stop murdering us.

          • PhilipTheBucket@ponder.cat
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            8 days ago

            And then, when the violence turned around on him, with a gang of deputized Proud Boys breaking into his workplace and starting to execute people for being “woke” and ruining the country, he looked around, like “we’re all looking for the guy that did this.”

            I’m not trying to say this particular CEO didn’t deserve it. But also, what the outcome is, is important. Calling for killing as the easy answer is something people do when they’re not familiar with killing.

            • OpenStars@discuss.onlineM
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              6 days ago

              People aren’t listening. And they’re downvoting you so are instead actively anti-listening.

              If people TRULY wanted “discussion” of this matter, that’s already possible in communities such as !politicaldiscussion@lemmy.world or !flippanarchy@lemmy.dbzer0.com or so very many others. In fact I made a post in the former community that you may be interested in. It has one comment, that was later removed by its creator.

              I find it odd that the only thing that people want to discuss is the one singular side of this particular issue… almost like they don’t really want a “discussion” at all…

              The similarities of the Alt-Left movement to the Alt-Right are positively scaring me right now.

                • OpenStars@discuss.onlineM
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                  6 days ago

                  When I was a kid, “truth” was easy to find. I taught myself SO MANY different languages even without reading any actual books - the knowledge available on webpages was sufficient (in fairness, those that I learned from real books I have retained much more readily, especially having learned why not simply how things tend to work; also, webpages can provide merely a different form of packaging the identical material).

                  Even now, material such as the Crash Course or Kurzgesagt – In a Nutshell YouTube series are still available, and I hear stories such as people in Africa traveling for hundreds of miles to a spot where often there is not even so much as a tarp providing cover from the blazing sun overhead, just 4 poles sticking up from the ground where one could go if/when it becomes available, and the entire class learns from a laptop or tablet screen (possibly with enlarged TV display). If people wanted knowledge, it is there for the taking, or was in the information age (except… it’s STILL THERE?!).

                  Now, I am finding it hard to adjust to the disinformation era.

                  Also, some things don’t seem to need “learning” to already know - it may be more about stripping away the lies, which again speaks to a willingness to engage. So I get it, but I think it’s sad as I watch what will eventually lead to the demise of Lemmy: an unwillingness to grow beyond what is here currently (though projects such as Mbin and PieFed - and perhaps Sublinks? - offer alternative avenues of hope).

                  Well, I actually somehow encouraged myself by typing this? Truth, even when sad, is soothing in a manner that lies will never be.

  • ComradeSharkfucker@lemmy.ml
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    8 days ago

    The meds I need in order to do anything cost $250/month but other than that I have fortunately avoided hospitals.

    Wait no, I got the flu real bad and had to go to the ER. Cost me over 2k and all I got was a tylenol and a 8hr wait

  • Bassman1805@lemmy.world
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    7 days ago

    My wife broke her ankle, spent the night in the hospital hooked up to IV pain meds, and had surgery the next day.

    Insurance said that the overnight stay was medically unnecessary, as the care could have been provided in a more appropriate setting. They only approved overnight stays in instances where the patient’s pain needed constant management or they were having surgery. Bonus points: there was a footnote on the denial papers saying that the person who denied the coverage had a medical background…in OBGYN. Not orthopedics.

    Spent literally months appealing that before they begrudgingly agreed that it was covered, which makes us the lucky ones in the US Healthcare system.

  • Warl0k3@lemmy.world
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    8 days ago

    One of the medications I take (treatment for an exotic form of seizure) is a Schedule 2 drug, and thus requires a full prescription to be issued monthly. Said prescription can only be written at most two days before the prescription is due to run out, because fuck you you filthy little addict. As a result I have never, not once, been able to get these prescriptions approved by my insurance before I start having withdrawals from the meds.

    So, yeah. Monthly withdrawals because a $30 generic medication that I’ve taken for years absolutely must be carefully evaluated to make sure I’m not selling it under the table to professional golfers or something.

    • bitchkat@lemmy.world
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      8 days ago

      My son has the exact same problem. He ended up skipping a day here and there until he has a 7 day buffer.

  • Limonene@lemmy.world
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    8 days ago

    I take a medicine which typically costs $600 per month. If I don’t take it, I won’t feel any different, but I could suddenly die (expected rate of one incident per 6 years).

    For some reason, my insurance, which is really terrible most of the time, is covering it at $0 per month, despite not having even met my deductible this year. If this changes on January 1st due to plan changes (or changes at any other time, for whatever reason) then I’ll probably just be screwed.

    So I just have to live with this uncertainty.

    (What do people do when they have a $10,000 deductible and have to take this med?)

    • shani66@ani.social
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      8 days ago

      At that point just apprentice with the local meth lab to learn chemistry and start making it yourself.

  • Pandantic [they/them]@midwest.social
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    8 days ago

    I had been getting the same medicine at the same pharmacy for quite some time, always costing something like $4. I go to the pharmacy to pick it up one time, and it’s $40. I need the medicine so I pay it (I can luckily afford it), but I call the insurance company to see what’s up. They tell me the manufacturer raised the price, there’s nothing they can do. I ask why I wasn’t informed that my medicine would be 10x the price, they say that “there isn’t a system in place to do that.” I ask what I am supposed to do, and they say, “there’s other manufacturers for this medicine that are cheaper.” I ask what pharmacy has those manufacturers, and they say they don’t know. So I have to call the pharmacys, get the manufacturer’s names, then call the insurance back and ask them the cost.

    Also, I had the thing where the doctor was “in network” but the lab (right down the hall) was not, so I got an unexpected bill. I spent hours on the phone arguing, and they finally took the charge off.

    My experiences have been infuriating, inconvenient, and frustrating, but not life-threatening luckily.

  • TurtlePower@lemm.ee
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    8 days ago

    I have many, but the one I’m willing to share:

    So I have a dead tooth that is broken at the root, so it requires major invasive surgery to be removed. Well, insurance will only cover localized anesthesia. Local anesthesia doesn’t work on me; I can still feel it. Not to mention that they are going to have to go deep to get the root. So I have been living with this for years.

    A couple years ago it got infected. I went to the local hospital — Forbes Medical Center in Monroeville, PA. I walked in the emergency room, delirious from fever and pain, and checked in. I sat there for HOURS. Then, the abscess ruptured. I run up to the desk, trying to get help, or at least a fucking barf bag or something because I now have a mouth full of puss and infection. Well, the useless bitch at the desk did literally nothing; just went back to fucking around on her phone. So I went in the bathroom, spit it all out in the sink without washing any of it away so they can fucking deal with it, and walked the fuck out. I was stopped by the security guard at the entrance asking me if I was ok. The goddamn rent-a-cop gave more of a shit about my wellbeing than that fucking shithole of a “hospital”. I will bleed out and die in the gutter before I ever go back to that fucking place.

  • fan0m@lemmy.world
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    8 days ago

    My family member spent about half a day in the emergency room and died. No insurance for various reasons. We got a bill for $86,000.

    I wish this was made up.

  • go $fsck yourself@lemmy.world
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    8 days ago

    I live in the US. All my healthcare experiences are ‘American healthcare’ experiences.

    I was basically raised to just avoid ever going, because it’s just not affordable.

    • braxy29@lemmy.world
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      8 days ago

      you got it. i spent a couple of years dealing with the kind of problem where you’re supposed to go to the ER right away; needless to say, i just. didn’t.

  • DrabPoultry@midwest.social
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    8 days ago

    I had to have an incredibly painful procedure (with no pain relief or anesthesia) to determine if I had endometrial cancer. My insurance “covered” it, but I still owe over $2000 for it.

  • Confused_Emus@lemmy.dbzer0.com
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    8 days ago

    I have UHC insurance and am prescribed fluoxetine (Prozac). Prescriptions that you take for longer than three refills must be ordered through their mail order pharmacy, OptumRX. Seems like they always take about a week to process and mail out the prescription, and then I’m waiting on USPS who take their time to get it to my mailbox.

    All that mess instead of my doctor just sending my prescription to the pharmacy that is literally across the street from my apartment, where I could get it filled the same day. Been thinking about just starting to pay for it out of pocket so I can use my own pharmacist.

  • CubbyTustard@reddthat.com
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    8 days ago

    ruptured a disc in my back so bad my legs gave out and i couldn’t walk properly. When i made it into an ER a day later they gave me pain meds (which i didn’t want or ask for i wanted diagnostics) and then turned me away and wouldn’t help me.

    I went to the urgent care clinic next door but when they found out i was on state healthcare they said they couldn’t treat me even if i paid.

    I bought a bunch of beer to numb the pain and spent the next few months in bed until i could walk again.

    every time the subject of back pain came up they got incredibly stupid and just wouldn’t even look. i did get an xray that didn’t show much so they all assumed i was lying.

    Is been 5 years and i still can’t ride a bicycle for more than 5 minutes or lift very much or i’m in bed the next day. can’t sit without lumbar support for more than 30 minutes.

    I can walk though so i’m grateful i have mobility! I am going to physical therapy finally in a couple weeks but still haven’t gotten an mri.

  • JakenVeina@lemm.ee
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    8 days ago

    Was just in the ER for the past 2 days, actually.

    My 9-year-old very suddenly had a lump in his abdomen, with mild pain. We waited for 4 hours to see a doctor, and by the time he did make it in, the lump was gone. We’re presuming it was a mild hernia, and we’ll be following up with a pediatric surgeon.

    Now, I’ll mirror the sentiment from a few comments here that everyone we interacted with was great. Every member of the staff was friendly, accommodating, and professional. The staff was very forthcoming about what was going on, the hospital’s only pediatrician at the time had been pulled into an emergency C-section procedure upstairs. Very understandable. One staff member even went and tracked me down a portable phone battery somewhere, when I asked for a charger.

    Point being here is that even when the industry is FULL of top-notch professionals doing all the important work, there’s still a big problem in the system. This particular hospital is HUGE, it services hundreds of square miles. Why is there only one pediatrician on staff at-a-time, in the whole place?