Rare Disease Day 2019

Today is Rare Disease Day! The theme for this year is #ShowYourStripes, which I love because of its reference to the term “zebra”, which many of us with rare disorders call ourselves. This comes from the old phrase physicians turn to when dealing with patients; “when you hear hoofprints, think ‘horse’, not ‘zebra’.” This mindset (while reasonable) … Continue reading Rare Disease Day 2019

Dismissed and in Crisis: When an ER turns away patients with Adrenal Crisis, they risk lives.

I have written an update to this post on 8/23/2018. I am not going to name the hospital I went to in this article. My intention is not to shame this particular hospital for how they handled the situation that I am about to describe, but to share my experience personally. There are many stories … Continue reading Dismissed and in Crisis: When an ER turns away patients with Adrenal Crisis, they risk lives.

Crossing Your Bridge: The difference between defeatism and realism

A sign on a bridge says that it can hold two tons of weight. If the bridge builder tells you you can not drive a three ton vehicle across it, he is not being a defeatist, he is admitting that the bridge has limits and he is protecting it from being destroyed. I think that … Continue reading Crossing Your Bridge: The difference between defeatism and realism