[image quote]: "I was going to doctors who were all saying, "We don't know what this is, and don't come back again," and that has been the recurring theme for years and years now." - Chelsea, episode 24; Mystery patient

[image quote]: "I was going to doctors who were all saying, "We don't know what this is, and don't come back again," and that has been the recurring theme for years and years now." - Chelsea, episode 24; Mystery patient

24 Building a Mystery (episode page)
Description: In this episode, Chelsea talks about her long term mystery symptoms doctors labelled an unknown rare disease, her complicated relationship with shunts placed to relieve intracranial pressure, her recent Lyme Disease diagnosis that may or may not explain everything, and the lack of knowledge and research that makes that still unclear. In today’s bonus episode, we talk about the emotional trauma of being undiagnosed for so long, positivity and inspiration porn, her blog and misadventures in dating, and the sometimes dangerous business of being a woman in the world.

[intro]
Hey there and welcome to In Sickness + In Health, a podcast about chronic illness, disability, medical traumas, and everyday uncomfortable healthcare experiences. My name is Cara Gael; I’m not a doctor or medical professional, I’m just a person and a patient who really wants to talk about this stuff more.

Nothing said on this show should be considered medical advice. If you’re experiencing a medical issue, please seek qualified medical help. I know the system sucks, but I wish you a lot of luck. Every person is different, even within disease groups, so none of my guests should be regarded as official representatives or spokespersons for their conditions. Please respect their very personal choices, and unless they ask for it, please don’t make suggestions about treatments or lifestyle changes. Unsolicited medical advice is never not annoying.

In today’s episode, Chelsea talks about her long term mystery symptoms doctors labelled an unknown rare disease, her complicated relationship with shunts placed to relieve intracranial pressure, her recent Lyme Disease diagnosis that may or may not explain everything, and the lack of knowledge and research that makes that still unclear. I also talk about my own jaunt down the rabbit hole of Lyme Disease, which you can hear me talk about in more detail on my episode of the Lyme Voice podcast, which I’ll link to in the show notes.

Even though we talk quite a bit about Lyme Disease in this episode, I don’t want to misrepresent it as an episode about Lyme Disease—I’ll do plenty of those in the future with people whose Lyme experience is a little more clear cut. My own experience with the disease was complicated by my underlying genetic condition, and Chelsea only very recently received the diagnosis, and has yet to figure out where it fits in to her diagnostic picture, or how it will affect her treatment.

In today’s bonus episode, we talk about the emotional trauma of being undiagnosed for so long, positivity and inspiration porn, her blog and misadventures in dating, and the sometimes dangerous business of being a woman in the world.

This week the CDC officially released it’s new prescribing guidelines for opioid medications, aimed at reducing addiction risk. These guidelines are not mandatory, but many legitimate pain patients worry this will further jeopardize their access to necessary pain medication. In case you missed it, a couple week’s ago I talked to Jen about needing regular opioid pain medication at a time when those medications are public enemy number one. We talked about why she needs access to these medications, how poorly we deal with drugs here in the US, and how challenging it can be to really treat chronic pain. We discuss the important distinctions between addiction, abuse, and dependence, and the many tradeoffs and compromises we often have to make in treating chronic health conditions. So check that episode out if you haven’t already.

You can find Chelsea’s blog, The Sick and the Dating, at thesickandthedating.com, and in the show notes. You can also find Chelsea on Twitter @ChelseaFreund, and on Friday’s she cohosts #SickadillyChat with Nikki Seesfeldt on Blab, a new platform for live streaming video discussions. I was on a couple weeks ago talking with them about crowdsourcing difficult diagnoses. This Friday’s chat will be about The Challenge of Superbugs in Healthcare at 5pm EST. I will link to my appearance on SickadillyChat and this week’s chat in the show notes as well.

Find resources and more from us at insicknesspod.com and on social media @insicknesspod. Subscribe, rate and review us on iTunes, which helps other people find the show. And now, I’ll let Chelsea tell you about where her medical saga all started.

[interview]

[outro]
And thank YOU for listening to In Sickness + In Health. Find resources and more from us at insicknesspod.com and on social media @insicknesspod. Subscribe, rate and review us on iTunes, which helps other people find the show.

And don’t forget to be excellent to yourselves and each other.