Patient Empowerment Pulse

  Managing chronic illness means spending a lot of time at medical appointments—but how much of that time is actually helpful? Too often, we leave the doctor’s office feeling frustrated, confused, or unheard. The secret to better appointments isn’t just picking the right doctor—it’s showing up prepared. Before your next visit, pause and ask yourself these seven questions. They could completely change the way you advocate for yourself—and help you walk away with the care you actually need. 1. What’s my #1 goal for this appointment? Are you hoping to get a new symptom evaluated? Asking for a medication change? Needing help with side effects? If you don’t define your goal upfront, it’s easy to get sidetracked by small talk, test results, or whatever’s at the top of your chart. Knowing your priority keeps you focused. 2. What’s changed since my last visit? New symptoms, worsening pain, side effects from meds—whatever’s different, write it down. Changes over time are critical data...

  When you live with chronic illness, self-care isn’t optional—it’s survival. But self-care isn’t all bubble baths and expensive skincare (unless that’s your thing). It’s about finding tools that genuinely make life easier, reduce pain, and help you stay as functional as possible on the hard days. Here are 10 self-care products that I’ve personally tested (or had highly recommended by other chronically ill folks), spanning comfort, pain relief, and practical day-to-day survival. 1. Heating Pad or Heated Blanket Why It Matters: Heat therapy isn’t just comforting—it can help with muscle pain, joint stiffness, cramps, and even some types of nerve pain. Personally, I sleep with mine underneath me to help manage my ankylosing spondylitis. It keeps my hips and lower back from locking up overnight, and I wake up with far less pain. A full-body heated blanket can be game-changing for flare days. Pro Tip: Look for one with adjustable heat levels and auto shut-off. 2. Pill Organizer w...

Introducing Your New Essential Health Tool! Managing your health can feel overwhelming, especially when you're juggling appointments, medications, and symptoms across multiple providers. That's why I've created the My Care Companion: Patient History Booklet — a simple, organized way to keep all your essential health information in one place. What It Includes: Personal Info & Emergency Contacts Complete Medication List Diagnosis & Medical History Care Team Directory Symptom Tracking And more! Whether you're preparing for a doctor visit, coordinating care, or simply trying to keep your records straight, this fillable booklet is designed to empower you. I've purposely priced it at $5 to allow everyone to access it. Please feel free to email me if you cannot afford the cost of Ko-Fi. Available now on Ko-fi: https://ko-fi.com/s/7b438f904c Stay organized. Stay empowered.

When I was newly diagnosed with chronic illness, doctors would often roll their eyes if they found out I had been Googling my symptoms before an appointment. Back then, patient research was seen as a nuisance—proof that you were being difficult or paranoid. But the world is changing. The days when patients passively followed doctor’s orders are over. A new generation of patients—known as e-patients—is rewriting the rules of healthcare by actively seeking information, participating in their own care decisions, and advocating for themselves in medical settings. This shift isn’t just a personal trend; it’s a cultural transformation reshaping how healthcare works. What Is an e-Patient? The term e-patient stands for empowered, engaged, equipped, and enabled patient. These are individuals who: Research their conditions online. Track their own symptoms and health data. Join online communities to share experiences and advice. Collaborate with their healthcare providers instead of simpl...

The first time I went to a specialist, I had no idea of what I was in for. Because of this, I felt a bit powerless when I got there and was lucky to just be able to keep my nervous hands still, much less do something as complex as self-advocacy. Luckily for me, I had stumbled upon a truly good doctor who walked me through the process and taught me the ropes. That's why I'm here now, to share what I've been taught and help my other friends in the chronic-illness trenches to get the care they need. Specialist appointments are precious—and often short. Whether you’re seeing a rheumatologist, endocrinologist, or any other specialist, showing up prepared can make the difference between a productive visit and a frustrating one. One of the most powerful ways to maximize your time is by bringing your own personal patient history document . Why Preparation Matters More Than Ever Specialists often work under intense time pressure. They have to review your chart, ask questions, exa...

  How to Fight Back — and What to Do When You Still Can’t Afford Your Meds There’s nothing like the frustration of finally getting the right prescription — only to have your insurance deny it. If you’ve ever gotten one of those confusing letters full of fine print and insurance-speak, you know the feeling. Step 1: Understand Why They Said No Before you fight, know what you’re up against. Common reasons for denial: The drug isn’t on your formulary. - This is a fancy way of saying the insurance company refuses to cover the medicine. This is not final, though. They want you to try other drugs first (step therapy). - The "other drug" is almost always significantly cheaper. This is an attempt to save money that's couched as "standard patient care". You and your doctor can work together to decide if the step therapy is right for you or not.  They claim it’s not “medically necessary.” - This ambiguous category is meant to cover things like cosmetic medicines, or truly ...

  Welcome to Patient Empowerment Pulse: Real-Life Wisdom from a Professional Patient Who I Am Welcome to Patient Empowerment Pulse, a blog built on the hard-won wisdom of someone who’s lived both sides of the healthcare divide. I’m Joanna, and this is more than just a health blog—it’s a survival guide for anyone trying to navigate chronic illness, complicated care teams, and a medical system that often feels like it’s working against you. I didn’t set out to become a professional patient. I trained for a career in culinary arts. But life had other plans. Over the years, I was diagnosed with lupus, Sjögren’s syndrome, spondylitic arthritis, inflammatory-onset diabetes, and a growing list of related conditions. That’s when I discovered that all my professional training didn’t fully prepare me for what it means to actually live this every day. This blog is where I share the strategies, hard-earned insights, and practical tools I’ve picked up along the way—not just from books and degre...