https://soundcloud.com/sunny-ammerman/nords-living-rare-forum-was-virtual-in-2020-heres-how-it-went As a rare disease patient and advocate, I have been an enthusiastic supporter of the National Organization for Rare Disorders (NORD) for many years, so I was absolutely thrilled when I discovered the annual NORD Living Rare, Living Stronger Patient Forum was coming to Cleveland, Ohio in 2020! It's only a few hours away … Continue reading NORD’s Living Rare Forum was Virtual in 2020, Here’s how it went
Author: insomniadoodles
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 … Continue reading What PE taught me about my Rare Disease
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 … Continue reading Site Changes and Life Updates
5 tips for keeping good mental health while stuck at home (from someone who has had lots of practice)
I've got eyesight so bad I can't legally obtain a drivers license, and health so unpredictable I'm unable to work, so I've had to get used to spending a lot of time stuck at home. When states across the U.S. started ordering residents to shelter in place to flatten the curve of the rapidly growing … Continue reading 5 tips for keeping good mental health while stuck at home (from someone who has had lots of practice)
COVID-19: Plan, don’t panic!
Here is a video I just released on YouTube sharing how I plan to protect myself from the growing coronavirus pandemic. I am at higher risk than most because I have a compromised immune system. Even though I believe it is important to stay vigilant and plan ahead, I am not giving in to the … Continue reading COVID-19: Plan, don’t panic!
How can VR help homebound individuals?
I am hosting an event on Altspace to discuss the potential for VR to have a positive impact on the lives of people who are homebound due to health, disabilities, or other reasons. I'll share what I have discovered regarding real technologies being developed to improve the lives of people who can't easily get out … Continue reading How can VR help homebound individuals?
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
When chronic illness makes you gaslight yourself
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
Another Adrenal Insufficiency patient has died from inadequate care.
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.
One Gamer Fund – Charity Stream Announcement
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
