Keep on keeping on. Skills are an important buffer that also create comfort. Learning to make bread here. #kingarthurflour #bread #homemade #baking

Medicine slow rolled and delayed my care so much over the years I now get to navigate a bunch of medical stuff in the middle of the apocalypse. Further, I may have missed the window to avoid cancer. Meanwhile, I had most of it figured out on my own by 2019. If *I* could do it, it's not that hard. They have got to get better at diagnosis and facilitating patients. #medicine #healthcare #cancer #raredisease

In my corporate career I saw how international espionage worked. Ergo I never believed China was ten years behind on chips and by extension leveraging AI. The problem is I get the sense our leaders do. We've had really poor government leadership on China & corporate security that leaks like a sieve for decades & we're now being lapped because of it. Congrats to China tho. #ai #openai #china #geopolitics

These are the eras where fortunes are lost BUT also made, and maybe for once, people who aren't sociopaths could be the ones with all the money. Luck favors the prepared and all that. Moral: Don't give up, prepare. Anyway I'm prepared for my shingles vaccine today and hoping it doesn't spin me like a cow in a tornado bc my biochemistry is the weakest snowflake.🫣 #deepthougts #MoralOfTheStory #prepare

@falcennial you missed my point. Look at where I specifically said social media. I hate to break it to you, but the number of social media physicians who troll patients is much higher than those who bother to learn from them. It's a consistent dynamic. It's painfully obvious w/ rare disease but the low quality behavior hurts everyone. It's exhausting how literally everyone assumes they know better than the person living it & believe doctors are saints. I highly recommend the book Doing Harm.

The vast majority of physicians know so little about rare disease and are so unable to recognize competency in patients that fully 98% of my interactions with physicians on social media just prove my point. Idk if they're acting in bad faith, using me as a whipping post, or are just that bad but I highly recommend they stop assuming a patient is wrong or uneducated. #medicine #raredisease

I once bought a pool trying to avoid surgery. A motherfking POOL in DECEMBER y'all. It was half price bc yanno WINTER but it didn't work. And that about sums up what it's like trying to deal with rare disease. #raredisease #medicine