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
The sleep study I didn’t sleep for
Last Fall, my TMS psychiatrist decided he wanted me to have a sleep study. All of my doctors have been worried about my unrelenting fatigue for quite some time and have tried approaching it from several different angles. He thought, why not get a sleep doctor involved? (Novel idea, I know.) I met with the… Continue reading The sleep study I didn’t sleep for
2017 Dysautonomia inspired gift guide
Happy Holidays! Merry Christmas! Happy Hanukkah! Merry Solstice! Happy Non-Denominational Winter Event!!! It’s my long awaited holiday gift guide! Holiday shopping induces a kind of paralysis for me—I want to strike the perfect level of thoughtfulness and utility while finding something really well priced. (I’M SO BROKE IT HURTS.) I hope I can relieve you… Continue reading 2017 Dysautonomia inspired gift guide
When doctors mess up
I had an incident with one of my favorite doctors recently. He’s a headstrong physician—just like I’m a headstrong patient. Despite this, we generally work together very well. When I’m sassy and sarcastic, he usually sees that as an indicator of my good health overall. (He’s right. If I’m screaming in righteous indignation about something,… Continue reading When doctors mess up
Thanks, friends
A quick post. Without getting into specifics, the last few months have been some of the hardest in my life. I’m on the upswing right now (knock on wood, pray I don’t jinx it), but I imagine this fall has been just as difficult on my loved ones. So this Thanksgiving, thank you to everyone… Continue reading Thanks, friends