I have Lupus. I was first diagnosed with Lupus a few months after the birth of my oldest child. She is now 33 years old, so do the math.
Lupus is Incurable.
Lupus is Autoimmune.
Lupus Patients each react differently to the disease based on their own genetic and environmental and other factors, though there are a few Most Common symptoms.
Lupus has Genetic, Environmental, and potentially Other (currently unknown/ unconfirmed) causes that all contribute to whether someone eventually comes down with it. Lupus affects women 90% more often than men, and is thought to be linked to hormone levels, but it is not an absolute and has not be 100% proven in double blind scientific testing. NO ONE knows with 100% certainty what, exactly, causes 1 person to come down with it and another to never go through it. Anyone who claims to know 100% what Causes it - is blatantly lying. Full stop.
When I was originally diagnosed, more than 30 years ago, there were no definitive blood tests, and what few bits of bloodwork there were that could back up the diagnosis were neither definite, nor necessary, to Obtain a diagnosis. That has changed during the course of my life, and although several of the existing blood tests are still far from 100% accurate or definitive, many doctors would prefer not to risk being seen as potentially Wrong, and therefore rely on those for all diagnosing rather than their own training.
And therein lies the crux of my current issue. I am currently between doctors, because my insurance changed at the beginning of the year. I was searching for a new primary care doctor when this whole stupidity surrounding nCovSars2-2019 happened to start rearing its ugly (and horridly over rated and over reacted to) head.
For most of you, finding a new PCP or PD (primary care physician, or primary doctor) is a piece of cake. You look through the list provided by your new insurance company, you pick a name at random off that list of In Network doctors, you call to make an initial appointment (where you may or may not show up with copies of your various records from your last long term doctor, typically just one or 2 doctors at most, covering a number of years, and perhaps 10 to 12 pages total) you go in, get a few things checked like your temp, bp, pulse, weight... then have a 10 to 12 minute conversation with your new doctor and forget about it until you come down with some seasonal flu or fall off the ladder and break your arm.
Finding a new doctor is not that easy for me. Not only do I have to go through the list of approved In Network offices, I have to look at whether they have any experience with Lupus and other Autoimmune Issues. I have to look into what their attitudes concerning Pain Mitigation happen to be, their ideas on pharmaceuticals (drugs that aren't specifically for pain) for both symptom mitigation and symptom control maintenance.
I get to wonder, until I talk to them face to face, whether they're going to pull the standard routine of being a contemptuous, ego driven ass who thinks I'm stupid because I'm not them.
I have to wonder how blatant they're going to be in their derision of the diagnosis given to me 30 + years ago, and reconfirmed (usually only after I snarl them into submission) by each of their idiot predecessors.
I have to steel myself for the inevitable conclusion that Every Doctor I've Seen For 30+ Years Was Somehow Wrong, But This One Is Right.
I have to resign myself to the inevitable that they're going to want to redo ALL THE BLOODWORK AGAIN, and are going to treat me like a heroin junkie who crawled in off the street looking for an easy fix until they get the lab results back that tell them - gee, she's not an idiot, a junkie, or a hypochondriac after all.
I have to grit my teeth, and simply "accept" as my lot in life that I'm Going to be considered an idiot or a junkie by a large percentage of them even AFTER that lab work gets back.
And gods forbid that I not smile and nod and treat them like they're doing me a fucking Favor for treating me like I'm less than human. Gods forbid I should protest when they roll their eyes and tell me I'm being Melodramatic or Exaggerating my pain issues.
How about the fact that I have to resign myself to 85+% of them blowing off everything I say - either because I'm Female, or .... worse yet - I'm Overweight. And I Must simply be Lying about how the vast majority of my serious weight issue started Due To The Medications For My Disease.
Finding a new doctor is no piece of cake for me. And even after the first appointment with one, I don't know whether I'll actually be able to Work With Them until I've been there a couple of months.
Some, its easy to see during the first appointment that we're not compatible. I won't tolerate being treated dismissively, talked down to, or treated with contempt or a lack of basic polite good manners. I won't. And I shouldn't be Expected to do so, either.
So if you're one of those who think I should just suck it up and play nice to find a doctor - go fuck yourself sideways with a dry cactus. I'm TIRED of playing nice.
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