What a month

It’s been crazy. I’ve always loved the fall. It’s just a superior season to everything else, because I can finally break out my jeans and hoodies and large assortment of hats. And stop shaving my legs. It’s a good time to be a human being. Sure, season changes mean major pain for POTSies and patients… Continue reading What a month

#DysConf 2018: Raising dysautonomia awareness in Nashville

NASHVILLE. MUSIC CITY. LAND OF HOT CHICKEN, BACHELORETTE PARTIES, AND TAYLOR SWIFT. (She does own like 10% of the city at this point, right? At least that’s what I’m lead to believe.) And also home to this year’s Dysautonomia International patient, caregiver and physician conference! For the first time ever, we ventured away from our usual… Continue reading #DysConf 2018: Raising dysautonomia awareness in Nashville

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

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

#DysConf 2017: recap, highlights and how I managed four days of going, going, going

As many members of the Dysautonomia International Medical Advisory Board, Board of Directors and Patient Advisory Board that we could corral at lunch

Given the fact that my favorite thing in the world is just sitting and talking or sleeping, it doesn’t make much sense that the highlight of my year is a four day conference that I spend the majority of each day on my feet, running around, making things happen. I *do* spend plenty of time… Continue reading #DysConf 2017: recap, highlights and how I managed four days of going, going, going