I apologize for not updating this blog in quite some time. I’ll admit, things got so hectic and I had neglected this site so much as a result that I even considered giving up on blogging and not renewing the domain name. I’m glad I decided against that, because I think things are beginning to settle down to the point where I can get back to writing again.
To those of you who have stuck it out, thank you! And those who are new, welcome! I’ve got a lot to catch you up on, so get cozy! If you don’t want to read all this, I’ve got you covered. Click here to listen to an audio recording of this article. There is also a web player at the bottom of this page.
2020 was obviously a dumpster fire for so many reasons, and in my case it really threw me off my routine so much it had genuine implications for my physical as well as mental well-being, and we all know how those can play off of each other in a truly chaotic cycle. Without wasting too much time on all the details, long story short, I basically lost a year.
The sudden need for masks led me to learn how to use a sewing machine, so that’s a new skill I’m grateful to keep with me. Increased accessibility to my Endocrinologist via telehealth and other meetings going virtual was awesome. Since I couldn’t safely venture outdoors to socialize, I became even more involved in Virtual Reality. This inspired me to create SpoonieVR, which has led to some really cool opportunities working with developers to improve accessibility in their products. Everything else 2020 wrought can stay behind.
I had to isolate myself even from my partner whom I live with since the factory he works at never really did take the virus seriously. We celebrated our 10 year anniversary in quarantine. We embraced one another, but we weren’t comfortable risking a kiss considering my compromised immune system. From early April 2020 until two weeks after I was fully vaccinated a couple months ago, I stayed home unless it was absolutely necessary for me to go out. I did venture out to the local park on nice days for some sun and exercise, but I was always alone. That, I do not miss.
Now, fully vaccinated and able to return to society, I feel like I’ve been given my life back. It took me a while to get things back on track, but I’ve eased into a healthy routine and I am thriving once more!
I have taken on the role of Volunteer State Ambassador for the Indiana chapter of the Rare Action Network, an advocacy and grassroots activism organization created by The National Organization for Rare Disorders (NORD). I hadn’t really planned on this, but circumstances led to me being the sole leader for Indiana RAN, and that has been simultaneously stressful, fun, and empowering. Obviously leading a group like this can be pretty time-consuming, but the NORD staff has always been super understanding. In order to keep my health my top priority, I’ve had to set some clear boundaries. This means limiting the amount of projects I take on so that I can properly manage my spoons, allowing me to continue to do this volunteer work I love so much.
I have other projects and hobbies outside of NORD as well!
I already mentioned SpoonieVR, and I host a weekly support group in AltspaceVR for folks with invisible chronic illnesses / disabilities / rare diseases. This group has been incredible. We’ve been meeting every week consistently since January 12th, 2020. Lately, it’s been growing quite a bit! I always look forward to our meetings each Sunday at 7pm EST. Some of the regulars have been coming every week since the very first meetup we had. If you would like to join us, we have a Discord server as well as a Facebook group where you can connect with the other members and find event links for our Altspace meetups.
I’ve also been doing the usual outreach and advocacy raising awareness for rare diseases like my own. I’ve had the pleasure of being on podcasts, local TV, and I even got to speak at a local Kiwanis event (this was before COVID). I still stream on Twitch from time to time, and Rare Disease Day this year was held successfully on YouTube. I have even more advocacy plans in the works, from giving an already officially planned 90 minute lecture for an online Rare Diseases course at Purdue on behalf of NORD/ RAN, to dreams of getting a “Rare Disease Awareness” Forever Stamp created by the USPS in celebration of Rare Disease Day.
It can be a challenge balancing my ambitious goals and my finicky health.
Ever since I won my disability case, I have been on a journey of discovery trying to learn what I can handle, picking up on clues my body gives when I’ve done too much, and establishing a routine that works for my body’s unique needs. My care plan these days consists of taking my necessary medications on time, sticking to a proper sleep schedule, maintaining a mindful and wholesome diet, and sticking with a consistent exercise routine when I am able to do so. Each and every day is regimented almost to the hour. I suppose I must have one of those “type A” personalities, because I apparently thrive on this structured routine. I’ve found that I do pretty well as long as I stick with it! Keep in mind, my “pretty well” is going to be different from that of a “normally healthy” person’s definition of the phrase. I am definitely not cured, but I am managing my care the best I can and it has absolutely had a positive impact on my overall sense of wellbeing!
I touched on this a bit earlier, but I’ve got a lot of plans in the works on the advocacy side of things! For now, my main goal is keeping on top of my health so that I can feel my absolute best. You can’t pour from an empty cup, as they say! I’m going to try to write more blog posts here and reviews on SpoonieVR, and of course my volunteer work with NORD takes priority above all else. As far as hobbies go, you can bet I’ll be enjoying some time in VR whenever possible! Please feel free to add me as a friend on Oculus! My username is InsomniaDoodles.