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Showing posts from April, 2025

Welcome to Patient Empowerment Pulse: Your Guide to Becoming Your Own Best Advocate

  Check out our storefront for self-advocacy tools and consultations. Or leave us a tip to show your support. 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 str...

Understanding Depression & Anxiety: A Guide for Families, Friends, and the Newly Diagnosed

Mental health conditions don’t always get recognized as chronic illnesses—but they absolutely can be. Depression and anxiety aren’t fleeting moods or personal weaknesses. For many of us, they are long-term conditions that impact sleep, energy, focus, relationships, and even physical health. This guide is for anyone who lives with mental health challenges—or loves someone who does. It’s about building compassion, shedding stigma, and offering real tools for daily life. What Do We Mean by Depression and Anxiety? These terms are often used casually, but clinically: Depression involves persistent sadness, loss of interest in activities, low energy, guilt, or hopelessness that lasts at least two weeks Anxiety disorders involve excessive worry, tension, or fear that interferes with daily life Both can cause physical symptoms—tightness in the chest, fatigue, nausea, brain fog, disrupted sleep, chronic pain, or GI distress. And both can become chronic conditions, especially when...

Understanding Chronic Pain Conditions: A Guide for Families, Friends, and the Newly Diagnosed

  Pain is supposed to be a warning signal—a temporary message from the body that something needs attention. But for millions of people, pain doesn’t go away. It lingers, evolves, and weaves itself into everyday life. Chronic pain is a condition in its own right, and it can affect every system of the body and every corner of a person’s world. This guide is written for those living with chronic pain, and for the people who love them. Whether the pain comes from fibromyalgia, nerve damage, autoimmune illness, migraines, or an injury that never healed, the realities are often invisible—and very real. What Is Chronic Pain? According to the CDC, chronic pain affects over 50 million adults in the U.S. alone—more than heart disease, diabetes, and cancer combined. It is a major public health issue, yet still under-recognized in medical training and policy. The National Institutes of Health (NIH) has emphasized the need for more research and patient-centered care models that validate liv...

Understanding Chronic Respiratory Illness: A Guide for Families, Friends, and the Newly Diagnosed

Breathing is so automatic, so constant, that it’s easy to take for granted—until something makes it hard. Chronic respiratory illnesses disrupt one of the most fundamental acts of living. From asthma to COPD, these conditions affect millions of people and can make everyday activities feel like uphill climbs. This guide is here to help explain what it’s like to live with chronic respiratory disease, how to offer meaningful support, and what strategies can help people breathe easier—literally and emotionally. What Falls Under Chronic Respiratory Illness? There are many forms, but some of the most common include: Asthma: Chronic inflammation of the airways, often triggered by allergens, exercise, or cold air Chronic Obstructive Pulmonary Disease (COPD): Includes chronic bronchitis and emphysema; typically progressive and worsens over time Bronchiectasis: Permanent airway damage that leads to mucus buildup and infections Pulmonary Fibrosis: Scarring of the lung tissue t...

Understanding Arthritis: A Guide for Families, Friends, and the Newly Diagnosed

  When people hear the word arthritis, they often picture stiff fingers or aging joints—but the truth is far more complex. Arthritis is not a single condition, but a broad category that includes more than 100 types of joint disease. It can strike people of any age, cause serious pain and disability, and often exists alongside other chronic illnesses. I live with multiple forms of arthritis myself—including inflammatory spondyloarthritis and overlapping autoimmune features. This guide draws from both personal experience and research to help demystify arthritis, build understanding, and offer support strategies that truly make a difference. What Is Arthritis, Really? At its core, arthritis refers to inflammation of the joints—but that inflammation can have many causes. Here are the most common forms: Osteoarthritis (OA): The "wear and tear" form, where cartilage breaks down over time. Rheumatoid Arthritis (RA): An autoimmune condition where the immune system attacks...

Understanding Hypertension: A Guide for Families, Friends, and the Newly Diagnosed

 High blood pressure—also known as hypertension —is one of the most common chronic conditions in the world. It’s often called the "silent killer" because it typically has no obvious symptoms, yet it raises the risk of heart attack, stroke, kidney failure, and other serious complications. In this guide, we’ll demystify hypertension, explore the hidden challenges it brings, and offer practical, compassionate ways to support someone living with this condition. What Is Hypertension? Hypertension occurs when the force of blood against the artery walls is consistently too high. Blood pressure is measured using two numbers: Systolic pressure (top number): pressure during a heartbeat Diastolic pressure (bottom number): pressure between heartbeats A normal reading is typically under 120/80 . A reading of 130/80 or higher is considered hypertensive according to current guidelines ( AHA, 2017 ). Hypertension Is Not Your Fault One of the most damaging myths about high blo...

Understanding Diabetes: A Guide for Families, Friends, and the Newly Diagnosed

Diabetes is one of the most common chronic conditions in the world—but for many, it remains misunderstood. More than just a matter of "too much sugar," diabetes is a complex metabolic disorder that affects how the body processes energy, regulates blood sugar, and responds to inflammation. In this guide, we’ll explore what it really means to live with diabetes, how loved ones can offer meaningful support, and practical strategies for thriving despite the diagnosis. What Is Diabetes? Disclaimer: This article is intended for educational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. Always consult with a qualified healthcare provider for personalized medical guidance and care. There are several types of diabetes, but the most common is Type 2 Diabetes , followed by Type 1 Diabetes and Gestational Diabetes (which occurs during pregnancy). In all forms, the core issue is that the body struggles to regulate glucose (sugar) in th...

Pooping Like a Champ: The Unsung Art of Digestive Greatness

  Let’s be honest—nothing ruins your day faster than a digestive system that refuses to cooperate. Whether you’re living with an autoimmune condition, battling brain fog, or just trying to live your best life, regular, healthy poops are foundational to everything . So let’s drop the shame and raise a glass (of water) to your colon’s most noble task. What Does a “Champion Poop” Even Look Like? According to the Bristol Stool Chart (yes, that’s a thing), the gold standard is a smooth, sausage-shaped poop that’s soft but not mushy, easy to pass, and leaves you feeling done . If you’re straining, sitting forever, wiping endlessly, or visiting the porcelain throne 8 times a day—your gut might be calling for backup. Step 1: Hydration is Queen, King, and Court Jester Water is the unsung hero of healthy bowel movements. Your colon’s job includes reabsorbing water, so if you’re running dry, you’ll end up with poops like little cannonballs. Aim for at least half your body weight in ounc...

Dealing with Dizziness and Nausea: 7 Grounding Techniques That Actually Work

  Dizziness and nausea often arrive together like an unwelcome duo. Whether it’s from dysautonomia, migraines, medications, inner ear issues, or blood sugar crashes, these symptoms can hit hard—and fast—leaving you unsteady, queasy, and anxious. This guide offers practical symptom relief strategies that help when dizziness and nausea strike. While these techniques aren’t a substitute for diagnosis or treatment, they’ve been used by patients with chronic illness, vestibular disorders, and postural orthostatic tachycardia syndrome (POTS) to regain control when the room starts spinning. I’ve experienced this more times than I can count. For me, it’s often triggered by standing too fast or even a sudden change in temperature. My vision narrows, my balance shifts, and if I’m not careful, I’m on the floor. What makes it worse? Nausea flooding in with no warning. That’s when I reach for one of the following techniques. 1. Grab the Coldest Thing You Can Reach This sounds odd, but it w...

Chronic Illness and the Guilt Spiral: How to Break the Cycle

  When you live with chronic illness, you’re not just battling symptoms—you’re often battling guilt. Guilt for canceling plans. Guilt for not working enough. Guilt for needing help. Guilt for not being the version of yourself you used to be. And that guilt? It spirals. One bad day turns into two, then three. You start judging yourself for how much time you’ve “lost,” and suddenly you’re not just sick—you’re ashamed. Let’s pause that spiral right here. Because guilt is not proof of failure. It’s a signal that you care—and caring is not a weakness. Where Guilt Comes From (It’s Not Just You) Guilt doesn’t come from nowhere. For many of us, it’s the result of growing up in a culture that glorifies productivity and independence. We’re taught that rest must be earned, that self-worth is tied to output, and that asking for help is a weakness. When you live with chronic illness, those values can become weapons turned inward. I used to believe that if I couldn’t contribute in obvious,...

Flare Day Survival Kits: What to Pack When Chronic Illness Flares Hit

There’s a certain kind of day that people with chronic illness know all too well—the flare day. The kind where symptoms rise like a tide, logic gets fuzzy, and even basic tasks feel like climbing a mountain in molasses. When that wave hits, having a flare day survival kit ready can make the difference between barely enduring and actually coping. This isn’t about curing the flare. It’s about softening the edges, minimizing the crash, and reminding yourself that you’re not powerless—even when your body feels like it’s betraying you. What Is a Flare Day Survival Kit? Think of it as your personal go-bag for those high-symptom days. It’s a collection of items, strategies, and comforts that support your body and mind when everything else is out of your control. The goal isn’t to fix the day—it’s to get through it with less suffering. Your kit might live in a basket by your bed, a drawer near the couch, or even a folder on your phone. The important thing is that it’s ready before you ne...

The Art of Asking for a Second Opinion (Without Burning Bridges)

There’s a quiet fear that lives in many patients: What if I need a second opinion, but I don’t want to offend my doctor? It’s a valid concern. Most people with chronic illnesses spend years trying to build some kind of relationship with a provider who doesn’t dismiss them, who listens, or who at least knows their case history. So asking for a second opinion can feel like an act of betrayal—especially if you’re conflict-avoidant or have trauma around being disbelieved. But here’s the truth: a second opinion isn’t an insult. It’s part of responsible care. And if no one else has told you this yet—I’ve been there. You are not alone. I’ve stood in that awkward space, wondering if I was being "too much" for wanting a second set of eyes. The first time it happened, I was told my symptoms were likely "just anxiety"—even though I had consistent joint swelling, recurring low-grade fevers, and rapid weight loss. It wasn’t until I saw a rheumatologist for a second opinion t...

All the Things I Thought Were Normal Before Diagnosis: Signs of Undiagnosed Chronic Illness

Before I was diagnosed with chronic illness, I thought everyone was just pushing through pain, fatigue, and strange symptoms. I thought brain fog was part of adulthood, that unpredictable digestion was just bad luck, that waking up tired every day was something no one talked about because it made you seem weak. This story isn’t unique. It’s the quiet reality for millions of people living with undiagnosed chronic illness. And if you’re reading this thinking, "Wait... isn’t that normal?" — maybe this article is for you. I Thought It Was Just Me Being Lazy For years, I planned my days around energy crashes I couldn’t explain. I needed rest breaks after tasks that others seemed to breeze through—grocery shopping, cleaning, even taking a shower. I kept quiet about it because I didn’t want to seem weak or self-indulgent. I told myself I just lacked discipline. But the truth was, I was experiencing a level of fatigue that went beyond being tired. It was cellular. Debilitating. D...

What “Flare Day” Means: Real Language for Chronic Illness and Invisible Pain

  If you live with a chronic illness, you probably know what a "flare day" is—even if your doctor never explained it, and even if your body never follows the rules. But for those outside your skin, this term can sound vague, dramatic, or even dismissive. That’s not just a communication gap. It’s a barrier to care, empathy, and trust. So let’s define it clearly—especially for caregivers, healthcare providers, and allies who want to understand chronic illness better. Let’s claim the language. Let’s help people understand what a flare day really means. A Flare Day Isn’t Just “Feeling Bad” The word "flare" might make people think of a brief moment of pain or irritation. But in chronic illness, a flare is more like a full-body event. It’s a systemic disruption that can affect pain, energy, digestion, mood, cognition, mobility, and even basic functions like temperature regulation or vision. On a flare day, your baseline symptoms don’t just return—they escalate . W...