Systems Failures – wasting our time and wasting our lives

November 16, 2014

Please, stop wasting my time. Stop wasting my life.

- Jess Jacobs

So much of healthcare’s inefficiency is captured in a recent post by Jess Jacobs, a rare disease patient who, after a year of healthcare encounters (including continuing treatment for postural orthostatic tachycardia syndrome, a kidney infection, shingles, pneumonia, a pulmonary embolism, and four blood transfusions this year), took apart the value for time spent seeking care.  And her findings were eye-opening. Read the rest of this entry »

A Brief Note To Pain

October 25, 2014

Dear Pain,

I know you exist. I get you’re not f’ing around. I feel you quite painfully all the time. Do you also have to make me nauseous too? Because that’s greedy, Pain. It’s just greedy.

I’m disappointed in you, Pain. I expected you to be useful, not greedy and spiteful. Your job is to alert me, not stalk me and sneak up to assault me.

Truly disappointed, Pain.

SNL Ebola Parody Reminds Me of Living With Chronic Illness

October 7, 2014

From the moment she said “I have Ebola” and he gave her “that look” – the look of “what did I get myself into?” and “I’m not so sure about this all of the sudden…” – I knew that this SNL parody: The Fault In Our Stars 2: The Ebola In Our Everything (video below) really described trying to have a relationship when you have chronic illness.

Read the rest of this entry »

The Hard Parts

October 6, 2014

Kim Vlasnik of the Diabetes Online Community (or #DOC on twitter) gave this riveting speech at Stanford’s MedicineX about the hard parts of living with Type 1 Diabetes.  Word for word, she expressed my fears and frustrations – noting that while we need insulin to survive, we need our community even more.  We need those who can say with deep empathy “Me too.”

I am ever so grateful for her brave talk.

If you’d like to be a part of the ePatient Scholar program at MedX 2015, applications can be found here. Applications are due by November 1, 2014.

“See me. Hear me. Feel me.”

September 22, 2014

My friend Sarah Kucharski – better known as AfternoonNapper in the epatient community – gave this incredible Ignite speech at Stanford’s Medicine X a few weeks ago.

If you’d like to be a part of the ePatient Scholar program at MedX 2015, applications can be found here. Applications are due by November 1, 2014.

I Am Them

September 6, 2014

My friend Carolyn Thomas posted an open letter I wrote on her website Heart Sisters.  As a result, Medicine X asked me to participate in their conference this year and presented my reading a shorter version – video below.

“Dear Medicine X Conference organizers, Read the rest of this entry »

Share Your Story

May 20, 2014

I’ve told a few stories about my medical care as of late, but my voice is one of many.  Scores of patients and their families have experienced medical errors, medication errors, doctor mal/mis-treatment, over treatment, hospital acquired infections and more.  For many of us reparations cannot be made.  But we can make change and try to ensure that patients who come after us receive better care.  To do this, we must share our stories. Read the rest of this entry »


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