An Update & A Long Couple of Years
My goodness it sure has been a while. My journey over the last couple years has been a bit chaotic but also productive.
Not only was I diagnosed with functional neurological disorder, but I was also diagnosed with POTS, an autonomic disorder (dysautonomia). it sounds like a lot, and it has been. Fortunately we have started working with the autonomic team at Cleveland Clinic who have been extremely helpful in diagnosis, treatment, and continued care. I am especially grateful and can't wait to help spread their wisdom, while maintaining my disability.
That said, these past few years have not been without their struggles which have continued and I'm sure are relatable to many. For those of us in the United States we know that hardly anyone you speak with will have anything nice to say about insurance. The primary struggle at this time is wrongful denial of disability benefits through my insurance. I mention this only to provide some additional visibility to this ongoing issue that too many of us have faced. I'm not going to harp on it too much here, but I think getting it out there is enough for now. Later, I may share more detail about the treatment I faced and what steps I had to take for help getting the benefits I deserve.
On a happier note, my husband, known as Meeple Mike, and I were fortunate enough to win the Best Masters Performance at Youmacon 2024. You can find links to our performance and the award ceremony on YouTube here: https://www.youtube.com/watch?v=4xBH34bOKTE | https://www.youtube.com/watch?v=rvFVIqGgBsk Special thanks to Icosplay for recording and posting all of the performances showcased at Youmacon.
Although I still struggle with endurance and simply not being sick all the time, I have still been working to be able to live stream on Twitch multiple times a week as well as maintain my cosplay efforts and crafting business. I'm too stubborn to give up on those last few hobbies that bring me so much joy.
While my YouTube channel has been fairly neglected just like this blog page, I hope that I can continue moving forward so I can add more content including videos about my experience with chronic illness and disability, as well as some tips on how I travel while being disabled, my favorite adaptive tools, cosplay stuff, and more. After all, I want to try to continue traveling for as long as I can because there may come a time when I'm no longer able to.
I'm going to keep this one fairly short, but I hope you will join me on my continued journey. I look forward to gradually making some changes with this website and other stuffs too. As always, I appreciate your compassion and understanding when it comes to my “disappearances” from flares or turbo sickies.
This post was written with the assistance of Google Docs voice typing tool.
