discharge = discharge from hospital
This sometimes doesn’t work. My wife is severely ill. Has been for years. A couple years ago she developed a wound on her heel that just wouldn’t heal. She spent a week in hospital while doctors tried to figure it out. In the end, they just thought she was fucking nuts given her constellation of symptoms and the fact that she is a woman. This dumbfounded me because she had a fucking wound on her heel. I told her that the wound was finally proof that she was sick and it was a good thing. Man I was fucking so wrong.
We finally found an expert in mcas who was like, yep you have mcas, you are the worst I’ve ever seen and here is a med for it. She is still severely ill, but her heel wound, which inspired no curiosity in the hospital doctors, is finally closing.
TIL about MCAS. How horrible, I hope they can cure it someday.
I thought MCAS was the thing that was crashing the 737 Max 8 planes by pushing the nose down.
No that’s called short term gains
It’s looking to be possibly more common than was thought, around one in twenty people, so you probably know someone with it. The symptoms vary significantly in type and severity. Some people are completely disabled, others have no idea they have it. I have it and mine is medium spicy - I can manage it with a shit ton of drugs and lifestyle changes. Still hoping for a cure as it fucking sucks.
I have so serious side effects from my anti-seizure medication it literally disables me more than my seizures (note that I rarely had seizures, it was just too scary for my parents), but every complaint of mine was just dismissed.
- Trouble with sleeping? Just sleep more, you will have more dreams and more health since more sleep means more health.
- Trouble with memory and concentration? Either just try harder, or take notes about every small detail.
- Weight gain even with a diet? Give up all your other hobbies and become a full-time sportsman!
I’m so sorry everyone is so invalidated.
What medication?
Valproic acid. It’s so infamous as a mood stabilizer that Scientologists were using it as their example of “bad medications”, but once toxic positivity around mental health care became fashionable, people were forced to wipe the internet on documenting their misfortunes with the medication.
Hey! I have MCAS too! Shit sucks
I’m sorry. It does blow pretty bad.
Its like my nail in the coffin.
I’m already bedridden because of two other chronic illnesses and then a covid infection somehow made me develop mcas
Luckily we haven’t been blessed with Covid (probably because she is home bound and we do not socialize). Her illness started with a virus like ten years ago. I’m her full time caregiver because the illness is so bad. Sucks.
Hey fellow MCAS person (well, their spouse)! I was reading your comment and was thinking “that’s sure as shit MCAS”. Surprise!
Glad her heel is doing better. If you ever need any MCAS advice, I’ve been managing mine for years and know a number of other folks with experience. I’d bet dollars to donuts we’re all in the same geographical region too, so I may be able to recommend some doctors if needed.
Thanks for this. She is currently seeing a guy who collaborates with Molderings and Afrin. He has tons of publications and is spending a lot of time with her. She sent him a letter describing her illness because he was closed to new patients. He called her and talked with her for 2 hours on the weekend the day after he got her letter. So we’ve got the Dr thing covered.
She’s real bad. I am her full time care giver because the pain and sensitivities are so debilitating for her.
Happens to men too unfortunately.
Went into the hospital last year in extreme pain between my chest and abdomen. This is the exact pain both my mother and father felt before their gallbladders had to be rapidly extracted.
Now, when I say pain, I fucking mean pain. They were giving me crazy amounts of high strength pain killers and they were lasting for more minutes. Then they prescribed me something and discharged me. Next day I’m back and worse than ever, so they finally admit me and assign me to the surgeon.
Man comes in immediately acting like I’m just here seeking drugs. I’m reeling in pain and we’re all explaining what’s happening. Dick head refused to do any tests, he just wanted to wait me out, so the bastard puts me on a no food, no liquids diet, so now I get to sit there and suffer in pain while also being incredibly thirsty and hungry.
Next day’s Saturday. I’m still in pain and I’ve heard nothing from the surgeon. I’m doing everything short of getting on my knees and begging for water. Still no tests. Still won’t take me off the diet.
Next, we threaten to leave and seek care elsewhere. The patient advocate comes in and we explain what’s been happening. They’re clearly shocked by his behavior, but can’t say much. So, without warning, she calls the surgeons personal number and puts him on speaker. We can all hear him out on a boat doing God knows what instead of testing me. So I go nuclear and loudly proclaim that he had better get his ass off that boat or the next phone call will be from my lawyer.
Within the hour I’m finally getting my blood drawn and tested.
The next morning, I still haven’t seen the surgeon. I’m woken up at 6am by a nurse telling me I have surgery in an hour. Turns out some levels were so high that they had to call in an emergency surgery team to do exactly what I had told this Dr. Cox wannabe dick head two days earlier.
Basically, the surgeon was content to let me lay there and die to prove I was drug seeking.
I honestly should’ve looked into malpractice suits, cause I’m still experiencing tons of issues a year later
You should seriously look into that, that guy could have killed you and might kill someone else.
This is why automation is good. Humans can’t be trusted to do critical jobs such as doctor, lawyer, cop, teacher, or judge without being influenced by a bad experience they had a decade ago, what they ate last, their pending divorce or how much sleep they got last night.
Honestly that just leads to automation with built-in bias, and now you can’t even threaten a doctor with a malpractice suit because you can’t talk to a person, or the only person you can talk to says “sorry, the computer won’t let me”.
You can’t use technology to fix social issues. People keep trying, and every time it just hurts chronically ill and disabled people even more. Have you ever heard of NarxCare?
NarxCare is a prescription drug monitoring program (PDMP) run by Bamboo Health. Bamboo Health was formerly known as Appriss. It is widely used across the United States by pharmacies including Rite Aid as well as those at Walmart and Sam’s Club. The NarxCare software allows doctors to view data about a patient, combining data from the prescription registries of various U.S. states to make the registries interoperable nationally. It also uses machine learning to generate an “Overdose Risk Score” that potentially includes EMS and criminal justice data; these scores have been criticized by researchers and patient advocates for the lack of transparency in the process as well as the potential for disparate treatment of women and minority groups.
Sure you still have innate/learned biases but eliminating situational (recent divorce) and bodily (hunger/sleepy/horny/sick) bias entirely is still a massive reduction in the total amount of bias you face day to day. If anything being able to see the biases of the data going into something like NarxCare is a good thing because now you have a paper trail for improvements. You can’t just grab a hundred doctors and ask them “have you ever denied care due to your biases against women?” because the bad ones will either lie or not realize what they have done.
I would genuinely rather work with a doctor who just got divorced than have to fight the invisiable AI blackbox that calls me a drug addict for being chronically ill.
You can’t just grab a hundred doctors and ask them “have you ever denied care due to your biases against women?” because the bad ones will either lie or not realize what they have done.
Unlike Narxcare, which just denies care due to biases and won’t tell you why because it’s a machine learning blackbox. There is no “paper trail” for NarxCare, because denying care to patients is the point. I can at least argue with doctors, or request a new one.
You can’t fix social issues with technology, and every attempt will just make things worse for the affected people.
Applies to young males, too! if you look able to work, doctors don’t give a shit. Mine even gaslights me about the pain I am in
Similarly, my husband has tattoos and a beard. He’s also in chronic pain from old injuries and some other health issues. He doesn’t drink or do drugs, barely takes OTC stuff either because it interferes with his medication for HBP and stuff. Staff and doctors usually assume he’s drug seeking and just want to send him home without trying to help.
Finally found a doctor that actually sees him and not his tattoos and tries to help. It has taken years.
Adding, we are not young.
Especially young black males
Weirdly old men, in my experience at least, tend to need to be in dire straights for THEMSELVES to acknowledge they need to see a doctor.
My stepdad died this way. He had a heart attack, but kept standing. According to my mother, he could barely stand straight and breathe. He didn’t go to the doctor and my mom believed he was fine when he said so. I was there when he got the another heart attack 3 days later. He came to, but had another heart attack later that day and died in the hospital.
And what for? To uphold an image? Is an image more important than the people who love you?
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My wife has Endo, and many doctors failed to diagnose it. One even told her she couldn’t possibly have it, because it is a “complicated disease” (okay…? How does that mean she doesn’t have it, dumbass?).
Finally went to some fancy, private practitioner dude that is well known for his study in Endo. He did a simple pelvic exam and said rather casually “yep you have Endometriosis. It felt like you have rocks in your vagina”. APPARENTLY IT WAS SO BAD IT COULD BE FELT, BUT OTHER DOCTORS WERE TOO INCOMPETENT TO NOTICE.
Really lost a lot of respect for the average doctor after that.
It’s always psychosomatic until it isn’t. (And by then, it’s so much worse than it would have been if it had been treated earlier.)
This article is so un-oniony that it isn’t even a garlic
I had to wait until I had organ damage that could be verified by testing for my symptoms to be believe. They were trying to shove anxiety meds, antidepressants, and antipsychotics down my throat the whole way down, and these were the doctors that I was traveling a long way to see because I actually liked them.
There is no such thing as “healthcare” in the USA.
As with most things that find a “'Murica Bad!” comment under them, this issue is far from just a US thing.
this issue is far from just a US thing
That’s not what I said. Many people around the world have legitimate complaints about access to and quality of healthcare.
But I’ve lived in 6 different countries and NEVER experienced healthcare this abysmal.
And it continues.
“How dare they criticize our great country”… is this what you are trying to say? Or do you think I should be grateful that I get any kind of health care at all, despite paying thousands of dollars every year?
I’d genuinely like to know… what exactly is the point you are trying to make?
That there’s an interesting trend of hyperfixating on the US in threads like this about problems that apply much more broadly across the globe.
That there’s an interesting trend of hyperfixating on the US in threads like this about problems that apply much more broadly across the globe.
I have to admit: This is quite a silly thing to say. Essentially you are criticizing people for talking about their own experience rather than experiences they know little or nothing about. When others have offered broader perspectives, such as my mention that my healthcare experiences in other countries has been significantly better, you double down.
This leads me to conclude you don’t really have a point to make.
Demands explanation
Receives explanation
Dismisses explanation out of hand to “win”
Classic
You may not have realised but I wager the dominant majority of Lemmy’s userbase is American. So the dominant discussion will be focused on America.
I agree with you, it is not limited to America. But all any of us can really offer here is an anecdote.
Anecdotally I watched my partner go through this is in Australia for PCOS. Many doctors seem to be unable to reconcile that they don’t know literally everything.
Sorry to hear about your partner. I hope they’re doing better.
Have a candid enough conversation with your wife/sister/mother/female friend and if they’ve been alive long enough to need a doctor, they probably have stories that will back this up. My wife, my mother, and my mother in law do.
My wife brings it up routinely (and she’s not at all the stereotypical feminist) when we discuss such things.
And then you ask for help to apply for disability, but they say that you’re only too sick to work because you are not engaging in healthcare, so they make your treatment plan goal “Get back to work”.
And the “treatment” consists of seeing you every six months to a year and asking “are you feeling well enough to get back to work, then?”
doctors are rich and powerful in the USA and still claim “we want single payer but we
won’t docan’t do anything to make it happen.”Oh this one hurts.
