Yesterday I attended the Medicine X Ed conference up at Stanford. I had planned on attending all day today too, but by the time I got home last night I was exhausted. My body could not handle another full day (12 hours of conferencing when you include the drive time to and from site). Then…
I have tried to find a good way to describe the difference between celiac disease and a wheat allergy – but first I had to figure it out myself. I knew that a wheat allergy is an allergy. Celiac is an auto-immune disease. The simplest way to explain it, is that when someone with a…
The other day a reporter asked me if I experienced survivor guilt. I really would not call it that, but I definitely have been feeling something. It feels more like I’m acting like a spoiled child or ungrateful or something. You see, my breast cancer was the most common kind of breast cancer (hormone receptor positive).…
After all the excited from the ALTC Conference in Manchester, I flew back to Belfast to attend a conference on ePatient – The medical, ethical and legal repercussions of blogging and micro-blogging experiences of illness and disease (#qubept). It was a small conference of about 30 attendees. You would not have known how small it was…
This morning I was interviewed for an article to be released as part of breast cancer awareness month (aka pink’tober) in our local newspapers. One of the questions the journalist asked me was “10 years from now, what do you hope to have gained from this experience?” My immediate, and really only, thought was: Looking…
I am very proud to have had a chapter that I wrote included in this anthology (“Breasts that aren’t Breast”). I’ll be attending the book launch on Thursday evening in downtown San Francisco – if you are local and want me to pick up a copy for you, let me know. About the Book: Shivering…
I define myself as an ePatient (engaged patient) – but mostly from the perspective of a patient who advocates for myself. Someone that seeks to understand my medical condition and ensure that I am getting the best care possible. I think of this as internal advocacy – or self-advocacy. Another aspect of ePatient is that…
When I hear these words, I remind myself that the person means well, but don’t know what to say. I thought I’d share a couple of them that happened to me over the last week. “If I had cancer, I would ….” This usually degrades into some diatribe about how diet or some other complementary…
By default, my assumption about food has been that I can eat it. I would rarely check the full list of ingredients – with a few minor exceptions. This is, perhaps, one of those “lifestyle” changes that needs to be made with a celiac diagnosis. Since I’ve been travelling in the UK this last week,…
I learned from my friend today that Jac lost her life to breast cancer. I didn’t know Jac but I knew a little about her story. She was diagnosed after me. I remember when my friend told me that her friend was diagnosed. I offered to be a point of contact, but Jac didn’t reach…
