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Anyone else have Symptomatic MGUS?

Blood Cancers & Disorders | Last Active: Nov 28, 2023 | Replies (73)

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@pmm

It is maddening just to read about it. I’m so sorry. At least in our system in the US (which is woefully lacking I might add), we can shop around until we find the right physician. I have never seen a physician who treated me with such disrespect twice.
You have educated yourself well on your symptoms so at least you know which demons you are combatting. I’m so sorry you have to be such a fierce self-advocate but so glad you have the grit to do so.
Patty

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Replies to "It is maddening just to read about it. I’m so sorry. At least in our system..."

Thanks Patty. It’s honestly heartbreaking for the world over that people are subjected to such disregard and maltreatment. Imagine if the people who worked in the health system actually strived for provision of appropriate care as their primary objective…I think even within the junk systems we have, there would be at least a 30% aggregate improvement in proficiency, service delivery, accuracy in diagnostics, and efficient use of resources.
I’ve never seen a process worker leave their station, go have a coffee and an hours’ chat with their colleagues while their task goes without attention for that entire time - the whole factory would need to shut down! However, the public health staff do exactly this, multiple times a day (reporting this from a patients perspective from being in hospitals many times over, as well as a former health worker seeing it from the ‘inside’ - which by the way was infuriating because I worked my rear end off to serve the people who needed my help as quickly and efficiently as I could, so watching these jokers stand around for 80% of their day used to give me an eye twitch to say the least!) so it goes without saying that the entire integrated system comes to a grinding halt!
Process workers get so little money, yet they work precisely, efficiently, and diligently, otherwise they get in trouble or lose their job.
I’d like to see each and every health worker do a mandatory placement in a processing factory for 4 weeks out of their study placement, so they learn the value and function of integrated systems, responsibility, and just doing your damn job when you’re on the clock instead of treating it like your own private mates club you visit each day and get paid for, while ‘annoying sick people’ invade your club venue.
The amount of blanket praise heaped on health systems and the instilled air of superiority in the medical profession mean that these people think they are something they are definitely not, and there needs to be a massive reality check handed out to bring them back down to earth. Sure, there are extraordinary people that are within the health profession, but there are extraordinary people in all professions - I’ve seen truck drivers save lives when witnessing accidents in remote areas, but that doesn’t mean society calls all truck drivers heroes and godsends. Just like there are the Lucy Letby’s of the health profession, but nobody then calls all health professionals evil.
It’s just a job, not an automatic hero position bestowed upon you, and you should have passion and humble pride for what you do as a person privileged enough to be in a helper profession..if not, leave and go do something else.
Ranting again, but this is how I see it.
And to live in a so called ‘first world’ country that (in Au, at least) neglects people so badly they unnecessarily deteriorate and sometimes pass away (from significant disease states or other emotional causes) when all the equipment and facilities exist to keep them functional and healthy within their diseases, it’s just crushing.
I have people known to me from Afghanistan, and they say that living in Au, they have much worse health care here, than back home in Kabul. That’s significant.
And this is why I am as stubborn as an ox, Patty. I don’t like it, so it’s my job to say something. Hence why I advocate systemically to federal and state govt for the people needing change. 🌺🙂