What PE taught me about my Rare Disease

https://soundcloud.com/sunny-ammerman/what-pe-taught-me-about-my-rare-disease I had originally planned for this article to be about my history of failing Physical Education (PE) classes. I suspected that because I was not properly educated on the health issues caused by my rare disease at the time, and had an inability to exercise like my peers, that this had a negative impact …

Site Changes and Life Updates

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 …

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 …

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 …

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.

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) …

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 …

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 …

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 …

Breakdown and a Revelation

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 …