Living with persistent illness means constantly juggling doctor appointments, lab visits, and pharmacy refills, all while wondering: Will I get better? Can I get better? How do I live with this? Life can quickly become overwhelming and scary. We know what it feels like because we’ve been there. We struggled for years trying to navigate the challenging landscape of the medical system as a patient and caregiver. Jenn is a lawyer, licensed in Oregon, who has suffered from persistent tick-borne illnesses for most of her life, and her mom, Julie, an occupational therapist, was her caregiver for a period of time when she was unable to fully care for herself. Managing Persistent Illness is a guide designed to support patients with persistent illnesses on their journey to health through compassion, encouragement, organization, and education. The book is like a cheerleader and a “how to” book wrapped into one.
Within the book, we’ve blended our knowledge from our respective careers with our experience as a patient and as a caregiver to create a well-rounded patient aid. In addition, we include several personal stories about what helped Jenn heal, as well as the mistakes we made along the way.
Topics include:
◊ Preparing for appointments
◊ Adapting to new limitations
◊ Managing expectations and overcoming setbacks
◊ Tracking symptoms
◊ Organizing medications
◊ Planning for emergencies
◊ Learning about insurance coverage, claims, and government assistance programs
◊ Keeping track of expenses for taxes and financial planning
