Tag: patient advocacy
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How to Talk to Your Provider About Pain: 5 Tips from a Patient Advocate
Pain is difficult to live with, and getting help for it can be even harder. Here’s what I’ve learned, both from my own appointments and from years of helping other patients through their pain management. 1. Know your pain…intimately Know what sets it off. Know what calms it down. Know its patterns the way you’ve…
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Rib Pain and Autoimmune Disease: Causes You Need to Know
Three common causes of rib pain in autoimmune diseases.
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What Sjogren’s Patients Need to Know About Trichiasis
Trichiasis happens when an eyelash grows inward toward the eyeball rather than outward.
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How to Find Your “Unicorn” Healthcare Provider
The information shared in this post reflects my personal experience as a patient and board-certified patient advocate. It is not intended as medical advice and should not replace guidance from your own healthcare team. My last post about the “if I just” spiral is about the bargaining that happens when a doctor recommends treatment escalation.…
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The “If I Just” Spiral: How to Handle Emotions Around Treatment Escalation
The information shared in this post reflects my personal experience as a patient and board-certified patient advocate. It is not intended as medical advice and should not replace guidance from your own healthcare team. Through a thoughtful conversation with my amazing rheumatologist (they do exist!), it was decided that it was time for a biologic…
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AI in the Exam Room. Your Job as a Patient Just Got More Important
If you’ve been following me for a while, you know I talk a lot about reviewing your visit summaries. Read them. Check them for accuracy. Flag anything that doesn’t look right and reach out to your provider to correct it. This has always been important because your medical records follow you for life. And a…
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What I Learned About Getting a Colonoscopy as a Patient with Chronic Illness
The information shared in this post reflects my personal experience as a chronic illness patient and board-certified patient advocate. It is not intended as medical advice and should not replace guidance from your own healthcare team. Always consult your doctor before making any decisions about your care. As someone with Sjogren’s disease, non-radiographical axial spondyloarthritis,…
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7 Advocacy Phrases Every Sjogren’s Patient Should Know
For my Sjogren’s patients, medical appointments can feel like a battleground where you have to hold the line and get strategic. It took me four years and four rheumatologists to get diagnosed. It can be rough out there! If you’ve ever heard frustrating comments like: “A diagnosis doesn’t really matter.” “Your labs are normal, so…
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20-Seconds to Improve your Doctor Appointments
https://resources.littleenginepatientadvocacy.com/20-second-appointment-opener-worksheet
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Affordable Sjogren’s Mini Courses for Every Step of your Autoimmune Journey
When Dr. Sarah Schafer of Sjogren’s Advocate and I created the masterclass Streamlining Sjogren’s: How to Navigate a Path to Diagnosis and Treatment, our goal was simple: give patients a clear roadmap to understanding Sjogren’s disease, which is far too often misunderstood and dismissed. We poured months into building a five-hour video masterclass with downloadable…
