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.
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!
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.
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?
Permanently Deleted
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
My experience with healthcare in the USA (both from the point of view of the "customer" and, to a small extent, from behind the scene) has convinced me that the risk of not being taken care of properly at a hospital is high unless you confidently and repeatedly stand up for yourself (and even then things can still go wrong).
When my grandmother had severe cardiac arrhythmia, she was in the hospital for several days without any serious attention from a doctor. Everyone just ignored the fact that every few hours, the alarm on her monitor would go off because her heart stopped for several seconds. I'm ashamed that I wasn't bold enough to get her help - I sat with her but I didn't track down the cardiologist and make him pay attention. My sister did when she arrived, and he immediately scheduled emergency surgery.
(I don't think the cardiologist was at fault - given how extremely overworked doctors are, they have no choice but to rush and they're inevitably going to miss things.)
The funny thing is that some guy came and tried to check my grandmother out while her heart was still stopping periodically. Something similar happened when my grandfather was dying. I think hospitals have an employee whose job it is to get patients out ASAP regardless of their medical situation.
It costs so much but the service is pathetic.
Don't be ashamed. Hospitals are overwhelming and confusing. Especially if your the patient, It's so hard to fight your illness and stay aware of everything that happens. I mean people in icu can actually get hallucinations just cause they're there. Youre supposed to trust the medical professionals, especially when theyre supposed to have so much more knowledge and the system is set up to where it's hard to question or stand up to them. Esp doctors who can seem brash, rude, and holier than thou, although not all will. But they are just people too. They forget, make mistakes, get lost, and jump to conclusions like anyone else. If youre not just a pita, the nurses may actually appreciate the extra eyes. The doctor may not appreciate it so much, but if they can't fire you, and you haven't done anything that warrants getting kicked out, they can kiss it. 8 years of evil medical school doesn't make them infallible and they've seen to much to be truly empathetic. You're trying your best to help yourself or a loved one, and it's their job to explain and discuss why they're doing the things they are (or not) doing.
One of the things I learned early on, between my close families and mine 6 or 7 hosptials stays , is to make sure you have someone to advocate for you. Even if it's for a scheduled surgery with a prolonged recovery there.
Commence incoherent, wall of text, rant. Feel free to ignore, as it's more just aimless advice from my experiences, than anything else.
Have someone in the room with you, at all reasonably possible times. Make sure they are not afraid to ask every question they can think of, point out every discrepancy they see, aren't afraid to piss off every nurse and doctor on the floor to ensure you get the proper care, and that they are willing and able to learn as much as they can to have intelligent conversations about the situations happening. Your advocate essentially needs to be your verbal chart, and to make sure they start the damn drip. They can also act as a second pair of eyes to see if it's equipment malfunction, or something more can be important. Which, somehow, I suspect is what they thought about your grandma. (The pluse ox is reading low? Lets adjust this, with previous permission and after they've seen the process a couple times, of course. Or, no, they didn't move before the alarm went off, it's not the leads.) They can also alert staff to new or worsening conditions or symptoms.
Obviously, within reason, though. Don't be a pest and just bitch about stuff or ask things of nurses that they just can't give you. But, asking them to do their job, is not being a pest. If someone gives an explanation doesn't add up, keep pressing. Send it up the food chain and make sure it happens in a timely manner. Make sure the right medications (and sometimes food) are being given (overdoses can and DO happen), and make sure they dont interact with something else that was already given. (What is that? I thought someone said your not supposed to give that with blood thinners, thats why we stopped in the first place.) Make sure the new nurse, after shift change, knows about that wierd medication they decided to try in the middle of the night. (Oh, your giving this antibiotic again? You know they gave them that one last night, was that not to be continued). Make sure there's an acceptable answer. (Oh its not normal? Well, why is it happening then? You don't know, well who will? Should we call them about it? I would really appreciate it if you asked. *dont forget to ask all persons involved next time you see them until you've gotten an answer.)
Make sure to learn what is normal and abnormal. (Is there something I can do to help with the swollen feet? Are only the feet supposed to swell or can the legs swell too? What if it starts peeling or changing color?)
A doctor should come in at least once a day. Stress the things that worry you, mention the things that don't. Ask if there's a test, tell them you want it, demand answers. If it's not the regular doctor that day and somethings off, like you said, call the regular doctor. If he's late, or a no show, pester a nurse till your sure they've made the call. Hold the doctor accountable, so he knows someone is watching and cares about the outcome.
And I think your right about the medical professionals. Im not trying to knock them. Most do thier best in the stressful situation they're in. Some of those crazy nurses on the ICU floor work 36 hours straight. They're overworked and understaffed, and have too many patients to truly give a good hand off about every single one of them. But, many dont read the chart, in serious detail, until you bring something up. They just see an overview and try to make it happen. The doctors have so many patients, they can't keep most of them straight, anyways, but some do seem like they're just there because they have to be. I haven't come across many truly negligent hospital medical professionals (nursing homes are a different story), but they are out there. (One that was way too physical with a frail old man, a nurse that overdosed frail man and almost killed him, and 2 young nurses that played a weird like practical joke? That screwed with frail old man, and us, mentally. Which is that actually negligence or...We didnt believe it, except they apologized during discharge.)
Anyways, it's just super important to have someone you trust there. The minute you let your guard down, or aren't capable of advocating for yourself, is the minute that mistake or plain negligence can cost you your wellbeing, or your life.
Also, yes they do try to get people out ASAP, esp if they feel the money's gonna run dry, regardless of if it is.
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.
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?"
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.
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.
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."Hi I'm a doctor in the USA. I absolutely want to have a single payer system. 50% of my patients are on Medicare. They pay worse than every private insurance company available. They've cut reimbursement for all billable procedures in my specialty every year for the past three decades. I've written a strongly worded letter to my senators. What exactly would you like me to do? Refuse to see privately insured patients and lay off half my staff? Seriously I'm listening.
While some doctors can obviously be problematic, the bigger issue is really the insurance companies and medical gouging from Pharmaceutical companies much more than doctors. I would personally like single payer that also makes sure to pay properly for procedures, rather than it going to companies charging ridiculous markups on meds.
Move out of this shit hole.
Oh this one hurts.
Yeah its a joke but it happens
Gross a saline and discharge drip? What kind of discharge is it?
quick one
