Lea slid into my DMs about two and a half years ago asking if I’d be willing to help her with a video she was making for Tiffany Rich’s transplant recovery. Lea’s best friend was in a dire situation and all she wanted to do was help. Little did I know that would be the...
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Is it a pain in the ass to find time do treatments? Is it annoying to spend hours each month on the phone with pharmacies and the insurance company? Have you stuck yourself far too many times with a syringe while trying to reconstitute a medication? Have you ever considered skipping a treatment just so...
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Life with chronic illness can seem like a series of calculated risks. Some choices can have a huge impact on my health (positive or negative), and I’ve been through enough in my 27 years to know that it sometimes pays dividends to make conservative choices. Other times, though, I need a kick in the ass...
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Good morning lovely people of the Internet! We’ve had TWO, yes TWO, consecutive days of chilly morning weather, so it’s time for my yearly reminder…. GET THOSE FLU SHOTS Let’s get in gear and get those flu shots. Don’t be an asshole and skip out on them. The most vulnerable in our community DEPEND on...
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Empowerment. The AIDS movement from the 80’s and 90’s is the gold standard for what patient empowerment should look like. It was essentially a patient centric civil rights movement that changed much of the healthcare landscape. Most notably with the way the FDA looks at clinical trials and oversight into breakthrough medications. What I’d like...
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We’re human beings, we have responsibilities – they extend beyond our health. We work, we have families, friends, hobbies, and obligations. We have lives outside of cystic fibrosis. My newest responsibility is my puppy, Blink. Blink is a Jack Russell Terrier (or so we think), and she’s absolutely taken over the house. We have another...
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I came across an opinion piece on STAT where Adam Hayden, a brain cancer patient, argues that drug companies and medical schools should be compensating patients for their “expertise” in whatever condition we are living with. I’ve never read an article that I have more wholesomely agreed with. Hayden talks about understanding the intricacies of...
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