We’re writing this two years since we left our apartment in Brooklyn, NY to embark on a year-long trip around the world. We honestly can’t believe it was that long ago. We wrote the first draft of this post of our complete around the world itinerary from memory without referring to any of our (copious) […]
Reflecting on milestones
June 17 is a pretty big day. Eight years ago today, I learned a very long word. Lymphangioleiomyomatosis. That word would answer questions like why I was struggling to breathe walking a flight of subway stairs or at my normal New Yorker pace. It was the scariest word I’d ever heard (its length didn’t help). […]
2018 Worldwide LAM Awareness Month
June is Worldwide LAM Awareness Month (WWLAM). Lymphangioleiomyomatosis (LAM) is a rare, incurable lung disease. Sarah was diagnosed with LAM in 2010. Since then, we’ve connected with many other women with LAM around the world. In honor of WWLAM 2018, we’re excited to share some of their stories and give you a glimpse into what […]
Traveling with LAM
I mention it often here – I have a fatal, incurable lung disease called lymphangioleiomyomatosis (LAM). Traveling has helped me and Justin cope with having this disease and the uncertainty it brings. While we try to build tips about traveling with a chronic illness and accessibility information about destinations into our posts, I haven’t actually […]
Working full-time with LAM
I found out about my LAM just one year after graduating from university with a degree in architecture, one year after having moved to a home 900 km from my place of origin. A year before my diagnosis, I left home with the dream of becoming a professional. I was in the best stage of […]
Being an athlete with LAM
It took crossing the finish line of my first marathon for me to consider myself an athlete. Although I enjoyed athletic activities throughout my life – softball, volleyball, track and field, swimming, hiking, skiing – it wasn’t until I took up running as an adult that I identified as an athlete. I became increasingly interested […]
Exercising with LAM
A couple years after my LAM diagnosis, I decided to take an outdoors fitness bootcamp class. I had lung surgery a year prior and was still nervous about upper body conditioning, not to mention struggling with shortness of breath. So I talked briefly about LAM with the instructor who assured me that she would be […]
Being a Nana with LAM
On April 1, 2013, my whole life changed. I was diagnosed with LAM. I was told, at that time, that I had only ten years to live. I was asked if I had a living will. My entire life began to spin out of control. Depression was creeping in and erasing my life-long dreams, one […]
Being a godparent with LAM
My name is Catrin. I’m 45 years old, married, and live in Germany close to the Black Forest. Right after my 30th birthday I had my first pneumothorax (lung collapse), but was healthy ever since. Then my life started changing every five years. It took five years and several pneumothoraces to get a diagnosis. So when I turned 35 […]
Being a working mom with LAM
In 2008, I was in my final weeks of graduate school at the University of Michigan when my right lung collapsed for the second time in three years. Within an hour of being admitted to the hospital, they did a CT scan of my chest, and I first heard the word “lymphangioleiomyomatosis.” When I was […]