Chronic Illness

TIL about MCAS. How horrible, I hope they can cure it someday.

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! I have MCAS too! Shit 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.

You should seriously look into that, that guy could have killed you and might kill someone else.

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.

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 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 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.

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?"

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.

quick one