Frank Rivera talks sarcoidosis, IBS, Parkinson’s, Sjogren’s, and cancer treatments.
I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
Before we get started, I’m going to do the thing where I plug my own work again. This week I published a piece on Medium about the diagnostic process called Diagnosis is a Process, Not an Event. It’s basically a summary of everything I wish I’d known when I first started getting sick, so much of which I’ve learned from doing these interviews. If you’ve ever had trouble getting friends or family to understand that you’ve been sick for much longer than you’ve been diagnosed, or that effective treatment doesn’t mean you’ll magically turn back into a healthy person, then I think this piece will resonate with you. You can find it on my medium profile at Medium.com/@bennessb. I don’t know why they include the at sign in their URLs, but they do.
Also, here’s a quick reminder that I recently started a patreon campaign, which is a really simple way for listeners to support the show financially on a monthly basis. So if you’ve been enjoying the show and you also have a couple bucks to spare, I’d be so so grateful if you’d sign up as a patron at patreon.com/noendinsight.
This week I’m talking to Frank Rivera about sarcoidosis, IBS, Parkinson’s, Sjogren’s, and cancer treatments. Frank also shares a lot about his advocacy work and the importance of caring for your mental health when you live with chronic pain.
As a quick content note, we talk about suicidal ideation and suicide due to pain later in the episode, while Frank is talking about connecting patients with remote mental healthcare.
Before we start, here’s my disclaimer:
This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.
[interview transcript coming soon]
Thank you for listening to episode 52 of No End In Sight!
You can find Frank on twitter at @SarcoidosisofLI and you can learn more about his advocacy at sarcoidosisofLI.org. You can find me on instagram and twitter @bennessb and of course you can find this show on instagram @no.end.in.sight.pod. I’m a pretty irregular poster because of my whole delayed transcript situation, although I did manage to get something new up there this week! But of course, the whole reason that I’ve started a patreon account is to help with those transcripts, so I’ll go ahead and plug that again: it’s patreon.com/noendinsight.
As usual, don’t forget that I have a small Facebook Group called Chronic Hustlers for people living with chronic conditions who are self employed. It’s quiet but growing, and you’ll even find a few podcast guests in the group.
This podcast is supported by my cross stitch company, Digital Artisanal. When I’m up for it, I make simple modern patterns that you’ll actually want to hang in your home. I’ve got some fun fall patterns in the shop, and dozens of very simple icons that you can customize to your heart’s delight. I’d love it if you checked us out at digitalartisanal.com.