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). […]
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 […]
Travel has helped me cope with having a debilitating lung disease. It’s taken me outside myself to help me not live in fear and wallow in sadness. When I’m traveling, I often feel like the strongest, best version of myself. But then, sometimes, travel also has a way of doing the exact opposite. It kicks […]
It’s currently raining here in Rotterdam, so I’m holed up thinking about how happy I am to be here and everything I love about this country. There are certainly more than this, but a top 10 list is always good. And hopefully this post will inspire you to visit the Netherlands too. 10 things I love […]
Are you a lover of tulips, flowers, bright colors, beautifully manicured gardens, and/or Instagrammable locations? If yes, go to the Keukenhof gardens in the Netherlands! About the Keukenhof gardens Keukenhof is one of the largest outdoor gardens in the world – it’s almost 80 acres – and is certainly one of the most beautiful. Keukenhof […]
People who don’t have lymphangioleiomyomatosis (LAM) probably don’t understand what it’s like living with a debilitating lung disease that limits everyday activities. Even the simplest tasks can take a lot out of us and we have to plan when and how we want to use our precious energy. Kelly says… I cannot have a life […]
Having lymphangioleiomyomatosis (LAM) is awful. Not only is the physical decline challenging, the psychological effects are especially rough. But when you are diagnosed with an incurable disease, even though you’re allowed to be angry and feel bad, it can be helpful to find acceptance and see the positives. And there are positives! I know I never […]
I know first hand how scary it is to get a diagnosis of lymphangioleiomyomatosis (LAM). It took me a long time to come to grips with it and get back to some semblance of normalcy in my life. But coping does get easier. And the women who contributed to this project have some really great advice. […]
Being your own advocate and trusting your instincts is so important when you have a rare, chronic disease like lymphangioleiomyomatosis (LAM). It can get you the care you need and even save your life. Before I had a diagnosis, I kept going to see doctors and even changed doctors when I didn’t feel one was […]
Being an active member of the lymphangioleiomyomatosis (LAM) community has really helped me cope with this diagnosis. I’ve worked closely with my doctor and her lab to help further their research. I’ve spoken at scientific and fundraising events about my experience. I served as a LAM Liaison for the LAM Foundation for several years, helping to […]