131–140 of 271 posts
I am wondering how many of these originated from Covid messing up the weakest parts of the body forcing generation of autoantibodies against them by the immunity.
I also have blood relatives with lupus and rheumatoid arthritis.
Sorry to hear this, thank you for publishing your account. I first found you years ago from your nfldb project: https://github.com/BurntSushi/nfldb and since then have used xsv and ripgrep. Also, thank you for participating in the clinical trial. I pivoted my tech career several years ago to focus on that industry (the tech isn't great, I'm trying to help that). Along the way I've learned how important it is to parti…
I'm glad that get to carry on doing whatever makes you happy, and for your whole family.
My ex has mast cell activation syndrome. We would have to call for an ambulance 3-4 times a month because some days eating a grape could cause her to go into anaphylactic shock. She was allergic to whatever her body felt like at any given time. She was misdiagnosed/undiagnosed for 18 years. I was baffled by this, and I myself have spent numerous hours down the rabbit hole of nootropics, and had a DNA test and was res…
Why did you breakup after everything?
My ex has mast cell activation syndrome. We would have to call for an ambulance 3-4 times a month because some days eating a grape could cause her to go into anaphylactic shock. She was allergic to whatever her body felt like at any given time. She was misdiagnosed/undiagnosed for 18 years. I was baffled by this, and I myself have spent numerous hours down the rabbit hole of nootropics, and had a DNA test and was res…
Why did you breakup after everything?
Human relationships are brutal sometimes. I still choose to treat others the way I would want to be treated, and some people _actually_ reciprocate, and you eventually learn who is who in your life, but this requires that you be open to the fact the majority won't, and that you will sometimes feel betrayed and used. You just have to accept that it's your decision to make, and decide what kind of person you want to be.
Other commenters are also probably right to one extent or another, the dynamic of the relationship probably changed pretty dramatically and that can create problems regardless.
Anyway, poor old AgentMasterRace probably feels like a depressing episode has turned into something they'd rather it didn't. Sorry for pontificating over your traumatic(?) event with allusions to my own. If I'm reading the meaning of their username correctly though, I feel less bad about it, lol.
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Yes, the biomedical world needs to go through the same boom that tech went through in the last 20 years. The problem is accessibility. Tech grew largely because of how accessible the technology is. Biomedical research is still very difficult to get into, and as a result seriously curtails the potential progress we as a society could make. I don't know what the solution is but there's got to be an easier way to tinker…
What's happened in software / computing in the last 20 years that's good? Imo it could be argued that overall the user experience has gotten worse. Dead internet theory, enshittification. * The web is pretty much dead. Time Berners Lee's ideals certainly are. * Computing is dominated by completely evil megacorps. * They are making a concerted effort to make people as tech-illiterate as possible and also make universa…
Linux has come a long way Valve's efforts with Proton/Linux Gaming
My wife has a cardiac autoimmune disease that was similarly misdiagnosed (including an appalling “it’s all in your head” from her family MD at the time). We underwent a year of immense stress. Just days before her probable death, she had a pacemaker and defibrillator installed, which saved her life. I’m not entirely sure why I’m mentioning this, other than I sympathize deeply with your wife. What an absolute ordeal.
Oof. That one resonates so much for me - even living in a country with far better healthcare.
There's a term I dislike but is apt: medical misogyny. Basically it's, "systemic, conscious, or unconscious gender biases [which] affect how a patient is treated by the healthcare system."[1]
Systemic in particular is that basically the vast amount of knowledge amassed in the medical sciences has come from studying men. Comparatively little for those not assigned male at birth.
One of my kids has complicated health issues, pretty much from the time they hit puberty. If they hadn't had me (someone born with a penis) advocating for them and attending most medical appointments throughout their teenage years I'm pretty sure they would be dead now.
My most appalling memory is a gastroenterologist who patronisingly told my kid with a diagnosed anxiety disorder which exacerbated awful gut pain from irritable bowel syndrome that, "If you weren't anxious all the time you wouldn't be in so much pain." We both had a good cry in the car park after that appointment. It certainly set treatment of their IBS back a couple of years at least.
(Fortunately after a string of bad ones, we found a GE that treated them with compassion, and not as a gastrointestinal tract with an annoying human around it.)
Whew, yeah, touched a nerve there. So, medical misogyny. It's a thing.
[1] https://australiainstitute.org.au/report/medical-misogyny-in...
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The problem with being a "fixer" in relationships is if the other party is fixed, what they want changes, and often what they saw in the relationship isn't as relevant anymore. (to speculate from afar)
Some fixer’s lose purpose once partner is “fixed”
If not, maybe op can reframe and grab life by the horns.
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Not to be a capitalist about it, but given the US health care system, and the fact that there's a diagnostic test for it, that sounds like a business opportunity. Setup an intake website where the customer, err, patient, fills out their information, submits their insurance, and answers a questionnaire, and then the teledoc web portal system gives them lab work to do. Charge the patients for the privilege, and also ch…
> Not to be a capitalist about it, but given the US health care system Whats that supposed to mean? Most countries have private healthcare too. Sometimes it is as popular as public i.e. Australia 45% is private vs 55% in US.
It's nice to see peoples' success stories with diagnoses. I've been suffering from something for more than 20 years now. I was healthy until 2005. Then it seemed like I got sick with some kind of virus and just... never got better. I have unpredictable good stretches and bad stretches. During my bad stretches I can't get out of bed. I've mostly given up on the idea of a diagnosis myself, after seeing dozens of doctor…
I've seen that happen with Lyme Disease, and with Mono. Autoimmune disorders are notoriously difficult to diagnose. In the 1980s, AIDS was like that. All these healthy, young people, just started getting these diverse horrorshow problems, then died.
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I honestly hate the US medical system for this. Basically you get scolded for not being proactive and ignoring symptoms, but if you are proactive and even slightly worried about something they treat you like a hypochondriac.
I practiced medicine in the U.S. and am now retired. This is such a complicated problem, not insoluble; and I would not want to explain away failures of the system. I spent the majority of my career at a major tertiary referral center. One patient sent to me had all the signs and symptoms of Beçhet’s disease. To me it was obvious; but putting myself in the shoes of the rural primary care physician, who has never seen…
I have seen my current PC doctor for 25 years now and he knows me well enough to spot significant changes. But he's retiring in a few months and I have no idea how to find a new doctor. My current doctor has no recommendations for me. (I'm not asking here for any if that's what this sounds like.)