Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV!
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Today we chatted with Maria (insta: patient.to.dietitian) who shares her story with
Ehlers-Danlos syndrome, Gastroparesis, PTTD, narcolepsy 1, bipolar 1, and more that we will dive into:
Notes:
Overview of Maria's diagnoses and how her conditions impact her life.
How Maria manages her daily routine and symptoms of her conditions. Maria provides a sample daily schedule including rest periods, self-care, and cleaning in smaller tasks (15 minutes on, 15 minutes off, or clean up by taking everything out of the room and then bringing it back in if you want it in that room “moving back in”)
Maria's experience in school and her passion for dietetics as a career path.
Discusses coping strategies like medication and therapy as well as the importance of a strong support system. Having a close friend who understands conditions helps with coping and advocacy.
Shares experiences with doctors who dismissed conditions and symptoms, including a neurologist and ER doctors.
Recommends getting second opinions, bringing an advocate like a case manager to appointments, and not giving up advocacy.
She shares that it's okay to experience burnout, seasons will change, and new treatments may emerge, so it's important to not give up hope.
