The Ride by Vasculitis Journey

In this special edition episode, Dr. Sara Baird Amodio draws upon her background in psychology and clinical social work to offer tips on going the distance and maintaining a sense of control for stay-at-homing for at-risk folks while others start returning to “normal”. You can do this.

Happy Vasculitis Awareness Month, y’all! In this episode, we are talking about how important it is to receive an early diagnosis and how this is a big push for the Vasculitis Foundation. We’re chatting with Art about his early dx and his work with NORD and RAN (you’ll learn these acronyms!).

In this episode of The Ride, we’re drawing upon our experiences of “living with the long haul” and the chronic nature of Vasculitis. We will be talking with Brandon and his work with the Victory Over Vasculitis initiative and getting his insights into how distance running is a lot like living with a chronic rare disease.

In this episode of The Ride, we talk with Jane Edwards from the UK about life there as a Vasculitis warrior and recently published author. We chat about COVID19, coming to grips with the emotional toll Vasculitis takes, and share what we all have in common.

In this special episode of The Ride, we’re talking about isolation. Folks with rare chronic diseases know a thing or two about being isolated. Yay! We finally feel useful! We get to offer others some suggestions during these trying times.

Sara takes a risk here. She discusses the impact that the Coronavirus is having on Vasculitis folks who are worried, nervous, and scared.

In this episode of The Ride, we are talking about resilience and perseverance. Vasculitis patients don’t give themselves enough credit for being some pretty mentally tough cookies. Our special guest is Kathy, an ANCA Vasculitis patient and martial arts master with an awesome story.

In this episode, we’re going on a weekend trip with friends to the Rocky Mountains. For whatever reason, altitude seems to affect Sara’s Vasculitis. But she will be hanging with some of her supportive friends - and chatting with them about how friends can support someone with a rare disease.

In this episode of The Ride, we’re chatting about a common manifestation of EGPA Vasculitis: neuropathy. This can be extremely life-altering, but with a little bit of moxie and the right support, you can figure out how to get around. Our guest, is Kate, a fellow EGPA chica, who will be discussing how she likes to move it.

Rituximab is a common course of treatment for folks with Vasculitis. In this episode of The Ride, we will talk about what the infusion experience is like, what you can expect by way of side effects, and how long you may be on this chemical merry-go-round.

In this episode of The Ride, we discuss the caregivers, spouses and significant others of folks who have a rare disease. Our special guest is Tom Amodio, Sara’s husband and caregiver.

In this episode of The Ride, we discuss how Vasculitis can take a toll on your mental health. The drugs certainly don’t help, and neither does the pain, the inconclusive tests, the ups and downs. Yeah. Our special guest is Dana, a licensed clinical social worker who works with chronically ill patients.

In this episode, we discuss the ubiquitous Vasculitis experience of blood draws and Sara takes a field trip to get her port accessed for blood work. Learn what is like for patients who live with a port.

Ever wish you could re-live your 16th year and revert back to an edgy, mouthy, and pouty kid? Do you ever wonder what you’d look like with a little *extra* weight? In this episode, we will discuss prednisone and dream of a day with more steroid-sparing drugs. Our special guest is Suzanne who will explain Giving Tuesday on December 3rd.

In this episode, we will be looking at the role sinuses play in Vasculitis. It’s kind of a thing. Really. Our special guest is Rosemary from Seattle and she will be discussing her experiences with sinuses and sinus surgery.