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
I’m sad to report that a fellow adrenal insufficiency patient has died recently due to inadequate care from hospital staff who did not immediately administer the stress dose steroids her body needed. Her death never would have occurred if they had administered the steroids IMMEDIATELY. Instead, they insisted on making her wait while they ran … Continue reading Another Adrenal Insufficiency patient has died from inadequate care.
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
Since I’ve been back on GH for a while and have recovered from that acute respiratory illness as well, I am feeling more like myself again! ❤️ Now that I have a little more energy than I have had lately, I am going to get back to doing more advocacy work for rare conditions. October … Continue reading #RareCancerDay
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.
Thanks for joining me for the birthday stream! I had an awesome time. There were so many laughs all through the night, I lost track of time and didn't realize until the end that I had streamed for three hours straight! I feel like absolute hell this morning, but it was SOO worth it! ❤ … Continue reading Birthday success!
I'm going to be having a special birthday stream tonight here in just a couple of hours! We'll be going live at around 6pm, hosting JackBox games and having giveaways every half hour! You can enter to win this as a car decal! I'm looking forward to the stream! Hope to see you there! (I … Continue reading It’s my birthday!