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 →
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.
https://youtu.be/iehJXmzzmqA In this episode we celebrate Blood Thinner Appreciation Day, the commemoration of living through my second pulmonary embolism experience in 2013. As I give you a sneak peek into how I’m celebrating this year, I also share why my personal celebration (and the days that followed) led me to grieve. In the end, I... Continue Reading →
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 →
It's a long hallway, but it's not long enough. My steps are limited, as is my ability to grasp what my doctor just confirmed. "You already knew what he was going to say," I remind myself as I approach the end of the hall. It's freeing to turn the corner and leave behind the clinic... Continue Reading →
“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 →
“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 →
December 2019: This time last year Ethan and I began discussing what it would look like to let you enter into our world, our real world. I wondered how I could answer the questions few people have been brave enough to voice. I contemplated how to effectively communicate why conversing about diversity is so important.... Continue Reading →
A few weeks ago my mom accompanied me to a biopsy appointment. My doctors had to biopsy a particular region of my right hand in order to confirm my genetic mutation. Even though I’m an adult, my mom is always near and attentive when doctors or nurses are working with me. This time, however, I... Continue Reading →
“It’s not real,” the kid said as he pointed at my right hand. I chuckled and replied, “Well of course it’s real, silly! It’s just a hand!” Before I could even finish my sentence, the kid was lunging toward my right hand. He grabbed my hand and proceeded to pull on it. He was attempting... Continue Reading →
Growing in the Groaning 