February 29th, the most rare day on the calendar, is Rare Disease Day! This is an internationally recognized day dedicated to spreading awareness of the existence of rare disorders as well as an opportunity to learn about and support legislation that will help those affected by them. Every year, I host events online on the … Continue reading Rare Disease Day 2020
🚨 Stream Announcement 🚨I’m always cautious about making plans to schedule a stream because my body likes to be as spontaneous as I am 🤣 but I wanted to give you guys a heads up that a couple friends and I are planning on having a special rare disease awareness stream on August 14th starting … Continue reading Upcoming Rare Disease Awareness Stream
Up until now, there were no sponsored posts or advertisements that made them any money off of my stories. Now it looks like that is changing, and I feel betrayed.
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
It may seem a little silly for someone who struggles with a disability to "set goals". I think that for the most part, society expects disabled individuals to just sit at home and do nothing. They can't work. They can't do the same things neurotypical folks can do, so why would they focus on setting … Continue reading Setting goals for 2019
It's going on 11pm. I've been contemplating sleep since 8. Rather than catching some sweet sweet "Z"s however, my mind is fixated on a regret I have, and now I feel the need to write about it so I can get this off my chest. I regret that I never reported one of my ex-bosses … Continue reading Late Night Confessions
Yesterday was one of my most stressful days in a very long time, but it was also a day filled with the joy of relief that the hearing was over, no longer looming over my head with fears that I might somehow ruin everything I have been working for over the last year and a … Continue reading My Disability Hearing
I recently came to a revelation. I have known for a long time now that I am disabled, and because of this, I am unable to work. I tried to work twice, and both times, I had to quit because of my poor health. The second time, I wound up in the hospital and I … Continue reading Breakdown and a Revelation
I've been a chronic illness advocate for quite a while now, and along the way I have encountered a wide variety of folks from all different backgrounds and levels of understanding about what it's like to be chronically ill or to live with a disability. Along the way, I have made connections with other chronic … Continue reading Why I choose to fight ignorance with patience
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.