The Liz Army:
A blog
Patient. Patient advocate. Researcher. Student.
There are more than 500 posts here. Use this search to look for something specific. Good luck!
A note about my oldest posts: I began blogging about brain cancer in 2008, at age 29. I had no background or knowledge about healthcare when I started. Please excuse typos and other misconceptions. What you read here is me in real time, like a time capsule.
Massive growth, but not the kind you think it is
What is harder: starting something new, or returning to something you used to do after an absence?
Having an “insult” to the brain is not a reflection on me, the relationships I’ve developed over my entire life, or my approach to doing the hard work.
So, I accidentally attended a national meeting 14 days post brain surgery
It was nobody’s fault. if anything, it was a perfect storm. I was excited to listen to the patient perspectives on research section of today’s meeting, convened by the NCI Patient Engagement in Cancer Genome Sequencing Network. I was supposed to be in “listen only” mode, and no one was expecting me to comment since I just had brain surgery 14 days ago. But the moderator asked me for my thoughts on a topic; I paused and didn’t know what to do. No one said anything, then the moderator again asked what I thought. Well, ugh, I thought, so I unmuted and turned my camera on to attempt to answer the question.
Hello from the other side of brain surgery
Hello everyone! It's me, Liz! I'm officially back from the other side of surgery, although my language and math skills are still very much on the mend. I hope you can bear with me as I relay this very personal update.
Deep undercover: observing “patienthood” from a research perspective
Literally everything I have learned over the last 7 years of working in healthcare applies to my current situation. I can’t help but both be in my body as “the patient” but also observing outside of myself, giggling a little and learning a lot.
The other shoe has dropped: I am having brain surgery again
Plans are in the works for me to have my third brain surgery sometime soon, likely in the next few weeks. Definitely in October 2021. It has been 12 years since my last.
How I wrote This: What I learned while writing my first paper for an academic publication
In medicine there is a saying: See one, do one, teach one. This paper was a do one experience.
Nobody knows you’re a patient: Getting used to identifying as a researcher
This sense of being an outsider is due in part to imposter syndrome, and in part due to not having many people who look like me in research. And by “look like me,” I mean people who successfully entered the realm of research through a nontraditional path… as a patient first.
What is Epic’s “Share Everywhere,” and how should patients use it?
Can you share your medical records with anyone, anywhere? That's the intent of "Share Everywhere," a feature of the Epic electronic health record company that allows patients to share their MyChart record with healthcare professionals outside of their home network. But how does Share Everywhere work?
Dear hospitalist: Hello from a former patient
I was only your patient for a few days, but your willingness to stay in touch during a crucial time changed my life forever.