healthcare roulette — how to be your own damn advocate

Himari is wearing a black corset-laced cold-shoulder top with a flattering fitted cut, paired with jewelry made by me: Micro seed bead strand for a minimal, delicate layer. Mallorca pearls + hematite bead mix, adding weight and shimmer… a lot like my It-Girl Mallorca Choker. Now you know what happened to the rest of my pearls!





porphyria psa

porphyria’s a rare beast, which means most doctors have no clue what the hell it is. i’ve sat in more waiting rooms getting misdiagnosed and given useless treatments than i can count. it sucks. so i stopped waiting around and started fighting for my damn health. 🖤

i found a specialist who actually gets it — huge win. i dove into research (shoutout to the american porphyria foundation) and started treating my care like a full-time job. clear symptoms? ✅ asking the tough questions? ✅ demanding tests and treatment that actually work? hell yes. 💜

don’t let any doctor brush you off. get second opinions. get third. your health is your life, and no one will fight for it like you can. persistence isn’t annoying here — it’s survival. surround yourself with folks who back you up, whether that’s a real doc, a friend who listens, or the internet’s weird porphyria corners. 🩸

this isn’t just about getting medical care, even though it is about that. it’s also about respect, being heard, and taking control when the system doesn’t have a damn clue what you’re going through. you deserve care that actually helps — and sometimes you gotta drag it out of them kicking and screaming. 🖤



rare-ass disease q&a

1️⃣ wildest misdiagnosis:

i had a doctor say it was just my weight, and she said “what do you eat to get this size? a lot of butter, i bet.” 🩸🙃




2️⃣ relationship with my body:

i’m a lot more forgiving about everything, i never force myself into the light. but much more critical and careful about when to have the carbs. 🌑💜




3️⃣ what every er should know:

the first thing we’ve got to do is turn off the motherfucking light. aren’t they reading? 💡🚫🖤




4️⃣ when it’s all too much:

sleep, get some work done. try to organize the space around me even if i can’t move out of bed. try to make my situation as comfortable as i can, stay occupied. thank goodness i can work + create from anywhere. 🛏️✨




5️⃣ what people should ask instead:

people who make assumptions should be asking instead. ask how i’m doing that day. ask if i feel like i’m up to sunrise surfing or a road trip through tinted glass. i’m just like everyone else, i just need lots of rest between adventures. 🌅🚗💜