I’m so tired …

… it’s a tiring to be a forever patient, handle all that comes with the diagnosis and the treatment, learn about all of the things that I need to know and understand to make good decisions, advocate for myself and others, be a mom and wife and friend. I spend all my spoons every day … Continue reading I’m so tired …

Shared Decision Making

This concept of Shared Decision Making is a relatively new one for me and so, as usual, I want to start with a definition. This one is a good general definition from a handout from http://www.healthit.gov: Shared decision making is a key component of patient- centered health care. It is a process in which clinicians … Continue reading Shared Decision Making

The Pressure to “Make Every Day Count”

One of the main suggestions I've received (and mainly followed) for dealing with a terminal illness is to be more mindful, to live in the moment, to focus on what can be done NOW rather than looking back or looking ahead too much. For those of us who are usually the planners in the family, … Continue reading The Pressure to “Make Every Day Count”

Betrayal Trauma

I recently stumbled upon this term, betrayal trauma, in an article linked to another article I was reading and I started to consider how this is something that I've struggled with. As usual, I feel something, react to it, and then am left to puzzle through what happened and why. So, let's start with the … Continue reading Betrayal Trauma