Uninvisible Pod
Uninvisible Pod with Lauren Freedman
008: Searching for a Diagnosis with Dayna Schaaf
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008: Searching for a Diagnosis with Dayna Schaaf

Join us as we embark on a series of interviews in search of a diagnosis. Dayna Schaaf is an entrepreneur based in Phoenix, AZ. She started having symptoms a few months ago and has early possible diagnoses of rheumatoid arthritis and/or lupus SLE. What does the search for answers in the invisible chronic illness world look like? How has it affected Dayna’s day-to-day? What about her access to healthcare? How has she found clinicians and community? What are the pitfalls – and the wins – of being on the hunt for a label? And should she allow that label to define her personhood as she gathers information? 

Listen in as Dayna shares...

- how she had an extended “summer flu” before she realized something more was going on 

- that she thought initial physical pain symptoms were related to her favorite workout: boxing 

- how she didn’t start exploring a deeper diagnosis until she found a lump in her armpit – which wasn’t cancerous, but seemed reactive (and which, in classic Dayna style, she has named…Nora the Node) 

- why she recommends you bring a friend or advocate with you to your first mammogram 

- that she has an aversion to doctors because of an early diagnosis of IBS, which she never felt was taken seriously 

- that former guest and autoimmune wellness coach Sascha Alexander is part of her support system 

- why she advocates for keeping a medical history file; Dayna keeps a medical notebook and brings it to every appointment, using it to track symptoms 

- what indicators she has for lupus and for rheumatoid arthritis 

- a detailed analysis of her blood work and x-rays 

- the struggle to adjust her lifestyle as an active person with chronic fatigue, brain fog, and pain 

- why working from home actually delayed her response to her symptoms – although it’s a saving grace that she’s able to dictate her own schedule as she seeks a diagnosis 

- how she has to become deliberate with her time and energy during a flare 

- the rush to meet the deadline to sign up for a comprehensive healthcare plan as she upgraded to cover her needs more effectively – and how much work it was to gather information and make a decision 

- the key piece of advice that got her a doctor’s appointment right away despite a weeks-long waiting list: asking for the doctor’s cash rate 

- that she believes in western medicine and science, but is also aware of her position as a customer in the rubric of American healthcare 

- why she sought a functional/integrative practitioner to treat her symptoms and diagnose her 

- her current doctor’s advice: “don’t get attached to your diagnosis. Just because you don’t have a clinical diagnosis doesn’t mean your symptoms aren’t real.” 

- that, in order to get a clinical lupus SLE diagnosis, patients have to meet four of 11 total criteria 

- her fear that people will think she’s faking it 

- how gratitude journaling has helped her shift her mindset 

- that nobody knows more about your body than you do: so take all advice you receive with a grain of salt, and remember any doctor on your team is a team member – but YOU are the CEO

Discussion about this podcast

Uninvisible Pod
Uninvisible Pod with Lauren Freedman
An award-winning podcast about invisible conditions and chronic invisible illness, featuring interviews with survivors, their loved ones, advocates, and experts in varied healing modalities, from medical to holistic. Hosted by Lauren Freedman, a health coach and patient advocate, who lives with Hashimoto’s disease and sleep disorders, Uninvisible uncovers real stories of survival and humanity – complete with laughter. In truth and with candor, we offer solutions – and challenge the world to change.