https://youtu.be/h8YbiZQJpHI In honor of CLOVES Syndrome Awareness Day, I came out of my blogging hiatus just to share why this day means so much to me. In this vlog, I’m sharing with you why awareness matters. For me, increasing awareness is not really aimed at helping others learn all of the symptoms/signs embedded in the... Continue Reading →
Pain Repurposed
https://youtu.be/IQMObW9EfK0 In this episode, I share how I’m seeing some of my past pain as a patient undergo an exquisite repurposing. This repurposing helps me both see value in my role as a lifelong patient and remember that perhaps the pain I’m feeling now can/will be repurposed too.
The Stories That Shape Us
https://youtu.be/31PKGIkFBes I recently heard that storytelling is essential for advocacy. I’ve spent quite a bit of my life typing my stories and sharing them with the world, but I now need to explore new outlets for storytelling. In an effort to minimize the amount that I have to type, I’ll use this YouTube channel and... Continue Reading →
Greater Awareness. Increased Action.
“I’ll be honest with you, Lindsey. I had to look up your syndrome before this appointment,” the doctor bashfully admitted. “I have never seen or heard of CLOVES syndrome.” Though she seemed slightly embarrassed by her lack of knowledge, she found comfort in my silent response. I warmly grinned and nodded my head, indicating that... Continue Reading →
The Unfortunate Event
“Lindsey, it may not be what you think,” my mom asserted, her voice breaking through my cacophony of wheezing. “Mom!” I tried to shout, but the sound of my interjection was muffled by my breathlessness. As my mom sped down the highway toward the ER, I couldn’t stop myself from saying the words I knew... Continue Reading →