Last year, I found myself reflecting on all the pinkness of October. I recall thinking that October will always mean something different for me. I blogged about how I wanted to kill all the tacky fundraisers and really talk about what it means to experience breast cancer – it isn’t about pink ribbons. This year,…
A friend (Marie Ennis O’Connor) has asked me to blog about something that I’ve learned through my experiences with breast cancer. I went back through my blogs, looking for this story, and realized that I did not tell it. Perhaps it is because it is a learning through reflection, rather than an in-the-moment type story.…
At some point, I hope that when I am blogging here, I’m not having to tell you about yet another new side effect of breast cancer treatment. It seems, however, that as time goes by, if it isn’t one thing, it is another. Last Friday I mentioned some swelling in my hand. I knew the…
Yesterday I did a short presentation for a conference session titled Patients 2.0, which is part of the Health 2.0 conference. Since I wasn’t given a lot of notice, I threw together a presentation relating to my rant about the diagnostic process for celiac disease – loosely based on my blog post. The question each…
Over the last few weeks I’ve had the privilege of deepening connections. I’ve been lucky enough to have been healthy enough and had funds enough to travel to the UK to attend two conferences (ALT-C Ed Tech Conference and QUB ePatient Blogging conference). This was quickly followed up by the Medicine X Ed conference here…
However cancer maybe anticipated in fantasy, the reality is different. Somehow the stories we have in place never fit the reality, and sometimes this disjunction can be worse than having no story at all. ~ Arthur W. Frank (2013, p.54-55). While walking today I was reminded of the advice I give people. I have ranted…
During the Medicine X conference, the twitter stream lit up with calls to give blood. This is always a bit of a frustrating feeling – knowing you want to give blood, but also knowing that you are not able to. But what I can do, and I am doing today, is to give a couple…
That is pretty much what I felt was the attitude of the first GI doc that I saw. I asked for an appointment to see this doc because I could see him sooner than the celiac specialist, but also because I wanted to get some information before going to see the specialist. I wanted to…
I am far from an expert at going gluten free, but I have found a few tricks to help me say no to the things that would cause me harm. The first is that when I see something tempting that is made from wheat (e.g. donuts, cookies, brownies) I remind myself that for me wheat…
One of the comments that was made, and repeated several times on the first day of the Medicine X Ed conference I attended last week was “we are all patients”. This caused me to tweet out: “we are all patients” rhetoric serves to silence the suffering of those with critical/chronic illness #medx #meded — Rebecca…
