Martin Luther King and Health Care

January 17, 2015

As I remember his fight for human rights this weekend, I came across this quote from Dr. Martin Luther King, Jr. I could not have said it better myself:

“Of all the forms of inequality, injustice in health care is the most shocking and inhuman” – Martin Luther King, Jr. 

Health is a human right.

When You Break a Jar of Hope

January 13, 2015

When you break a jar of hope it may seem like a rather small thing.  It may seem like no big deal, just a jar with words inside.  But when you break a jar of hope, you break a piece of my heart.

I started making “Jars of Hope” in 2011 when I worked for a nonprofit.  We would give them to cancer patients receiving treatment to help inspire them through their very difficult journeys.  And I thought that it was the perfect idea to expand to patients and caregivers wherever they may be – for we all need inspiration, especially on the hard days.


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Teaching Doctors

January 12, 2015

I am incredibly excited to be invited as an ePatient Scholar to speak at Stanford’s Medicine X in September 2015.  I have had the honour of being a scholar in 2012 on the design track with IDEO and remotely in 2014 to talk about the under-served.  This time though, I get to be a part of something new and hopefully incredibly powerful – teaching doctors as part of Medicine X Ed.

Every time I enter a doctor’s office or meet a doctor at an ER, I see it as an opportunity to teach doctors.  Long gone are the days where I allow them to treat me with paternalistic gloves.  I expect to be a colleague in my care and that requires that I teach them as much as they teach me.

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Dear Store – Please Take Gluten Free Seriously

January 5, 2015

Stores are failing at providing gluten free items all over the country.  It’s so frustrating for those of us with celiac disease – for whom gluten free is NOT a fad.  I don’t know why it’s so hard for them to get it right – but I think it’s because they’ve never actually asked someone with celiac disease what they want/need.  (In other words, designing for patients without patients aka end users.)

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Customer Service

December 21, 2014

My second real job was working as a cashier at Nordstrom in the Women’s Shoe department (my first job as a sales associate at a small children’s bookstore – Sunnybooks for Kids).  At orientation, Nordstrom taught us a few things that have stuck with me throughout my life since – people are generally telling the truth, customer service is paramount, and treat everyone with dignity.  Lessons that should be applied to healthcare (and life).

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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.


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