"Anti-inflammatories, knee sleeve, home exercises focused on knee joint stability, and if there are no improvements or symptoms worsen in 6 weeks, come back in." My orthopedic doctor had just finished evaluating what the heck happened to my knee 2 weeks prior. My right knee, the one that didn't have issues before. Now I have … Continue reading Norms can change
Tag: challenges
An ever-changing journey
I've been enjoying attending music festivals for about 7 years now, and that is apparently a good enough amount of time to judge how much my disease has progressed over the years. Music festivals are exhausting, especially camping ones. They involve long days of walking, standing, and dancing, typically in heat if the festival takes … Continue reading An ever-changing journey
What it means to be rare
What does it mean to be rare? Being rare isn't easy. And it's different for everyone. For me, it means a childhood of searching the ends of the earth for a correct diagnosis, undergoing experimental surgeries and procedures, and wondering what the future holds... It also means waking up sometimes with random backaches where I … Continue reading What it means to be rare
Permission to sweat the small stuff (& happy Rare Disease Day!)
Happy Rare Disease Day! As I’ve mentioned many times, living with CLOVES Syndrome is a journey of ups and downs. There are a lot of challenges, big and small, that come with this syndrome that can make life tough sometimes. I happened to be thinking one day about some of the ways that CLOVES impacts … Continue reading Permission to sweat the small stuff (& happy Rare Disease Day!)
PeaceLoveHeal 