It's been quite a while since I've published a new article here! There are many reasons for that, from a long period of extended illness (which seems to be getting under control now thanks to a change in my treatment) to sudden and very exciting new life changes that I am eager to share with … Continue reading Site Changes and Life Updates
rare disease
Rare Disease Day 2020
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
Upcoming Rare Disease Awareness Stream
🚨 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
Boycott The Mighty
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.
Why I decided to celebrate winning my disability hearing by going bowling:
“I felt guilty because I myself have been exposed to the (incorrect, mind you) preconceived notion that if I can not work, I should not be able to do anything physical, ever.”
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
Setting goals for 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
The Abortion Debate
There is a lot of discourse online about abortion access. I have been doing my damndest not to get involved, but it’s getting so hard seeing people that I know and love making terribly ignorant comments and completely demonizing women who needed to have abortions done. A year or so ago, I wanted to kill … Continue reading The Abortion Debate
Late Night Confessions
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
My Disability Hearing
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
Insomnia Doodles 