I’m five years into diagnosis, and it’s only the beginning

Some people have a very distinct “sickaversary.” Others have a given “diagnosaversary.” I have neither. Developing dysautonomia was a slow burn, it developed just as my body did from pre-pubescence into adulthood. And getting my diagnosis was a long, jumbled path. There was a distinct day my psychiatrist said, “I think you have POTS”—but keep… Continue reading I’m five years into diagnosis, and it’s only the beginning

I don’t know what changed in me, but it’s something big

CW/TW: mentions of suicidal ideation My depression has a set pattern: I’m well. Something trips up. I start to fall, fall, fall. I crash hard. I pull myself together. I get up. I get stronger, better, happier. I’m well again. I’ve done this a hundred times in my 25 years. I’m an expert. But when… Continue reading I don’t know what changed in me, but it’s something big

I’m going for the title of World’s Worst Patient

having a grand, ol' time

I don’t want to go to my cardiologist. I can’t remember the last time I saw him. It’s nothing personal. The farthest thing from it, really. He’s lovely. So is his wife who is another doctor at his practice. They’re kind, spend a lot of time on their patients, and they know what they’re doing.… Continue reading I’m going for the title of World’s Worst Patient

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What I need you to understand about POTS and rare diseases

Happy Rare Disease Week! This is a tremendously important week to focus on advocating for recognition of rare diseases and the people who live with them, raising awareness of how common they are and how many people live with them, and teaching the public what needs to be done in the research community to eradicate… Continue reading What I need you to understand about POTS and rare diseases