live like you’re dying (cuz you’re dying)

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in celebration of porphyria awareness month:

porphyria patients don't live long, but i'm definitely trying to make my current decade healthier than my previous. i've lost about 150 pounds and taken up adaptive surfing on lepus (my surfboard), even though spending too much time in the sun is a yikes-on-bikes situation for vampires. i can surf in near-dark, usually sunrise. cowabunga, cuz gnar is still ripe for the shredding at 4 am too!

as a vampire who can't even enjoy the sun without turning into charred toast, i value function over form. i drink my rockstar black (or white sugar-free), pet phyl, write, and love the moldy goldy oldies in my life (my buddies at the old people castle), because let’s focus on what matters. living without caring doesn't mean giving up—it means not gilding a lily-shaped turd. 

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