There is still very little understood about lymphedema. Because the largest population of those who suffer from secondary lymphedema (that is lymphedema as a result of surgery for something else) are breast cancer survivors, many of the studies involve the breast cancer population. I want to highlight that there is a difference between prevention of…
On the plane yesterday I watched The Celiac Project – a documentary about celiac disease. It was one of the things that arrived in my care package from the University of Chicago Celiac Disease Center. There were a couple of key learnings for me in the video. The first was to really internalize what it…
Research shows that anyone with celiac disease will have a reaction to ingestion of gluten when it reaches just 100 mg per day. Some people have been shown to react with as little as 10mg per day. In either case, we are talking about a very small amount: the equivalent of 1/8 to 1/64 of…
So you have this thing, and you are likely going to have it for the rest of our life, and there isn’t much we can do about it but … wear a compression garment and come back in a year … Really? I ended up sending another message to my doctors about lymphedema. They really…
I’m reading the University of Chicago Celiac Disease Center’s free ebook Jump Start Your Gluten Free Diet: Living with Celiac/Coeliac Disease & Gluten Intolerance. As I read I find I’m a little frustrated. I wish someone had told me sooner that celiac disease was a genetic disease – that is, there is a gene mutation…
I find myself often wondering, which one of my doctors is in charge? Which one is “the most responsible physician”? In my case this all gets complicated. I see a lot of doctors and nurse practitioners, across two different systems (Stanford and Palo Alto Medical Foundation). My medical conditions have overlaps, so when one doctor…
I heard a statistic the other night. I’m not sure of its source, but I wanted to demonstrate a logical fallacy. The statistic I heard was that 70% of women with metastatic breast cancer were diagnosed with metastatic cancer at initial diagnosis. What this means is that 70% of the women living with metastatic breast…
Life has been a little crazy lately. I cannot believe that I’ll be headed back to Canada next week for a brief visit with family, but also to run a few errands (visas, passports, textbooks). This will be my first flight after the lymphedema diagnosis. In some ways, I’m nervous about it. I’ve flown quite…
At this time last year I was preparing for my first surgery. I wasn’t really scared anymore. I was ready – or at least that is what I remember of it all. I remember being scared early on, but not being scared on the day of. I remember giving myself permission to go into surgery…
The kind folks at University of Chicago Medicine Celiac Disease Center have a program where they send out care packages to those of us who are recently diagnosed with celiac disease (requires formal diagnosis either with biopsy or via current protocols). The Gluten Free Care Package contains some food samples, a bunch of coupons, and some…
