"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: rare disease journey
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
CLOVES awareness and what it means
CLOVES Awareness Day. August 3rd. This day means a lot of things. A day to educate others about CLOVES. A day to share your story about living with CLOVES. A day to wear green or your CLOVES merch to represent this special day. A day to donate to CLOVES Syndrome Community to support them or … Continue reading CLOVES awareness and what it means
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
PeaceLoveHeal 