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
When someone breaks their arm, they can easily look down and see that it's broken. Reassurance that the pain and discomfort they are feeling isn't just in their head is constantly there if they just look at their mangled limb. Yep, there's my cast. I saw the X-Ray, my arm is in really bad shape. … Continue reading When chronic illness makes you gaslight yourself
This Friday, I will be hosting a stream to promote the One Gamer Fund (OGF) charity, which is raising money in order to support organizations that make gaming a better experience for all in a multitude of different ways, including broadening accessibility and inclusivity for ALL gamers. Here are some of the charities which the … Continue reading One Gamer Fund – Charity Stream Announcement
October 1st 2019 was the first annual Rare Cancer Day event promoted by the National Organization of Rare Disorders (NORD). With their permission and enthusiastic support, I was permitted to rebroadcast their webinar and share stories of patients living with a variety of rare cancers. I hosted an awareness stream on my Twitch channel which … Continue reading #RareCancerDay 2019 Roundup
It has been a hectic past few months. H E C T I C . I was transitioned from the Healthy Indiana Plan (HIP) version of Medicaid to Traditional Medicaid, and the change created some chaos with the coverage of one of my important medications, Growth Hormone. I am GH deficient (among other things), so I … Continue reading Life updates ahoy! (+”Subtember”)
I am writing to you now because I have experienced some distressing hardships due to the Indiana Medicaid office’s poor handling of my healthcare needs.
🚨 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
I haven't written an article in quite some time. I'll be honest, I've been grappling with something since I won my disability case. After the initial feelings of overwhelming relief started to wear off, I realized that I could now fully accept my status as a disabled individual and move on with my life. With … Continue reading Learning to enjoy life with a Disability
I completed a new painting today. I used a combination of watercolor, acrylics, and oil markers on a 24x48" wrapped canvas. It will be on display at the Whitewater Valley Arts Association's regional show this May. I have not decided yet whether or not I will be selling it. This is a commentary on what … Continue reading New painting, “Chronic”, playfully showcases life with chronic illness
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.