Update 6:33pm ET: the Storify feed wasn’t working. Should be fixed now.<\/i><\/p>\n
What a rocket ride it’s been for Xeni. Tuesday morning we reported<\/a> on the BoingBoing co-editor’s unexpected breast cancer diagnosis 12\/9, and her odyssey reading her scan data. (CDs didn’t come with software; in a few hours with Twitter help she’d downloaded OsiriX and was pushing her way through it.) Then she discovered her bone scan included a distinctly male body part, because (as the comments told later), the doc’s system has a crappy UI, making it easy to mix up the images.<\/p>\n Nice, huh? But she did the right thing: she’s engaged in it, she’s doing the “gimme my damn data” thing, and she got it straightened out.<\/p>\n Her first MRI the other day was a horrible experience: she was given no warning of how loud and claustrophobic it would be, and the technician empathetically scolded <\/em>her for not being a good patient. Sweet. This led to rapid crowdsourcing of a “#firstMRI project” to help people learn in advance what to expect. (See yesterday’s post here<\/a>.) I suspect this is gonna be a big deal in 2012.<\/p>\n Well, for her second MRI Xeni took her business elsewhere – found a much better machine and nicer people. By now, in four days Xeni has gone from being a total newbie to a totally empowered data-toting e-patient. Here’s today’s harvest from her tweets. (This is aggregated using Storify, btw, which is a pretttty danged slick tool for harvesting content from all over creation, including tweets.)<\/p>\n Would anyone out there like to say, “Patients, stay off the internet”?<\/p>\n <\/p>\n