Category: Uncategorized
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12 Things I’ve Learned About Ankylosing Spondylitis (and Axial Spondyloarthritis)
While math and I are typically not friends, I’m going to throw some numbers at you: That is what it took to finally get answers and treatment for progressing lower back stiffness and pain that plagued me for nearly five years. I don’t think I slept through the night without cringing or gasping in pain…
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Patient Advocacy Lessons from An Orange Cat
This is Mal Purrcino (the white slash across his face = Scarface = Al Pacino). One summer day, this loud-mouthed orange cat walked onto our property and demanded to be adopted, and we obeyed. This formerly feral cat (now fixed and vaccinated, you’re welcome, Bob Barker) has had nonstop health issues. In fact, we have…
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The Sjogren’s Course I Needed. The Course You Deserve.
Streamlining Sjogren’s is back and better than ever. When I first launched Streamlining Sjogren’s: How to Navigate Your Path to Diagnosis and Treatment, I built it from the ground up with one goal in mind: to create the exact course I needed when I was fighting for my own diagnosis. I wanted to make something…
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What Mental Health Awareness Means to the Chronic Illness Community
May is Mental Health Awareness Month, which means your feed is likely filled with soft green ribbons, gentle reminders to breathe, and quotes about self-love. I’m not poo-pooing those efforts. Any awareness is better than no awareness, but if you’re chronically ill, those pastel platitudes can feel more like a slap than support. Because when…
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Creating Your Chronic Illness Support Circle
When you’re living with chronic illness, the phrase “you’re not alone” is tossed around more than a football on a Friday night. But being surrounded by people doesn’t necessarily mean you feel supported. In fact, some of the most isolating moments happen in rooms full of people who don’t get it. Support is not about…
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Welcome to Sjogren’s Awareness Month: Let’s Raise Our Voices (and Glasses of Water)
Hello, Sjogees! It’s April, which means it’s time for Sjogren’s Awareness Month. It’s a time where we get to share our stories, raise awareness, and have a little fun while doing it. Whether you’ve just been diagnosed, have been living with Sjogren’s for years, or are supporting someone on this journey, this month is all…
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Trusting Your Gut and Taking Control: A Story of Advocacy in the Face of Breast Implant Illness
The world needs to know that women’s health issues often get swept under the rug, and it’s high time we start listening, talking, and advocating for ourselves. This is why I’m so thankful to come across this personal story on social media. With the patient’s permission, I’m sharing her story (and I hope you do,…
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IT’S FINALLY HERE! HOW TO BE A BADASS IN A BROKEN HEALTHCARE SYSTEM IS OFFICIALLY ON SALE!
I should probably write something polished and professional to mark this moment, but after pouring my heart, soul, and a few too many spoons into this book, all I really want to do is run (or gracefully waddle) through the streets yelling, “IT’S HERE, IT’S HERE, IT’S FINALLY HERE!” So, consider this my virtual confetti…
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New Study Shows Lasting Impact of Being Dismissed by Healthcare Providers
As a patient advocate and author of How to Be a Badass in a Broken Healthcare System, I often find myself navigating the complexities of medical appointments with a sense of purpose. Yet, as I approach a new patient visit in the coming days, a familiar anxiety settles in. Despite my advocacy background, I can’t…
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Quit Doing This One Thing in Your Medical Appointments
I used to think that if something was wrong with my health, I’d just go to the doctor, they’d figure it out, and I’d get better. Easy peasy. That belief lasted until 2019, when my body started glitching. Pins and needles, tingling, and patchy numbness in my hands and feet started one morning and wouldn’t…
Little Engine Patient Advocacy 