I was diagnosed with a rare lung disease that almost exclusively affects women at the Cleveland Clinic a few years ago and about an hour or so after the crash course on lymphangioleomypmatosis (LAM), the specialist told me about a closed support group on Facebook. I could hardly process the epidemiology of this disease; connecting... Continue Reading →
This one’s for you, mom. The Emory Cancer Winship Center has a brass bell with a braided rope that patients ring when they finish their course of radiation. Earlier this summer, my mother finished her radiation treatment for brain cancer and at the end of it all, I wheeled her up to the bell, which... Continue Reading →
I participated in a study conducted at the National Institute of Health (NIH) a couple of years ago to determine the disease process of Lymphangioleiomyomatosis (or LAM, my rare lung disease), and during my stay on-site, I had a chaplain visit me in my room to see how I was doing. She was a lovely,... Continue Reading →
I went out to lunch with a friend some time ago, and over kale salads and mineral water she asked “So, how are you doing?” I took that as my invitation to lament when I think she may have been looking for something a little more uplifting. So I responded with how isolating it’s been... Continue Reading →
One of the symptoms of LAM, my rare lung disease, is shortness of breath. I discovered just how short of breath I can get when I started walking with my neighbor in the morning. Turns out I could handle the walking just fine but add a conversation to it afnd I sounded like a freight... Continue Reading →
With my history of lung collapses due to a rare lung disease, LAM, I now have a very real fear of another collapse, especially when flying. Cognitive reasoning tells me that the chances of a collapse are very low now that I have most of the surface area of my lungs firmly attached to my... Continue Reading →
A few years ago, I ran a 5k race down in Florida while vacationing over Labor Day weekend. Although I finished the race, I was very discouraged at my finish time, which served as a painful reminder of my physical limitations due to my lung disease, LAM. Of course in retrospect, I should have celebrated... Continue Reading →
My left lung collapsed twice a couple of years ago over a course of a month. One Friday morning, I was at a hot yoga class holding pose #2, and I felt a stabbing sensation on my upper left back region, followed by an increased shortness of breath. I’ve had previous lung collapses on the... Continue Reading →
I discovered pretty quickly that I wasn’t equipped to handle the reaction I received after sharing my diagnosis of LAM with a few people. I was still processing the news myself and didn’t really have time to decide who to share my diagnosis with and how much detail to provide. I’ll never forget the look of horror... Continue Reading →
