Shownotes Transcript
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 This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit uninvisiblepod.substack.com)