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
Life updates ahoy! (+”Subtember”)
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”)
Letter to Greg Pence
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.
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
Learning to enjoy life with a Disability
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
New painting, “Chronic”, playfully showcases life with chronic illness
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
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.
Adrenal Insufficiency Awareness Month
Adrenal Insufficiency United has named April as Adrenal Insufficiency Awareness month. In honor of that, I’ll share some facts about my condition, Secondary Adrenal Insufficiency (SAI): 🔹My SAI was caused by my congenital panhypopituitarism. Basically, my pituitary gland does not function sufficiently enough for survival without assistance. This means my Adrenal glands do not receive … Continue reading Adrenal Insufficiency Awareness Month
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.”
Adrenal Crisis #3
"Buddy, I’m not trying to be better than you at your job. I was just trying not to die."