Hi everyone. I'm Lanie, or as my new nickname says, the rare bird. I started this blog because I want a place where I can share my thoughts and experiences. I have a lot going on in my life, from living with multiple disabilities and rare diseases and trying to manage my unpredictable health, to starting college online, to trying to learn independent living skills with my mom's help, and I thought it might help me and maybe others to share a little of what my life is like. I thought I'd use this first post to introduce myself and describe a little about what you might find on my blog.
I'm 31 years old and will turn 32 on December 3 of this year, 2023. I live in the hill country of Texas, not far from Kerrville, with my mom, stepdad, five dogs, lots of cats, and a chicken. I'm totally blind, autistic, and have a long list of chronic illnesses and rare diseases. The biggest diagnoses I have are Septo-optic dysplasia, empty sella syndrome, idiopathic intracranial hypertension, hidradenitis suppurativa, fibromyalgia, an undiagnosed stomach disorder, severe environmental allergies, obstructive sleep apnea, non-24-hour sleep-wake disorder, and migraines. I'll probably mention each of these at times during my posts, but if anyone is interested in a post on how each one effects me, let me know. I'll be posting a lot about my life with my disabilities and health problems. I'll probably do some posts about tools that have helped me, so if you're disabled or chronically ill, watch for those.
More importantly, I'm a Christian. My faith is not as big a part of my life as I'd like it to be, as I had some things happen about a year ago that really shook it, and I was forced to leave the church I had been a member of for eight years when I found out some horrible things and realized they were a cult. My family also doesn't attend a church at the moment since we just moved. All this to say that my faith isn't the strongest right now, but I'm definitely still a Christian, and I'm trying to get into the Bible and grow it again. I know God is there, and He loves us. I know Jesus Christ died on the cross for us. I just don't know some of the finer points of what I believe, or which denomination I want to belong to. I listen to a lot of Christian music, though, and love it.
I've recently realized that I'm asexual. I've known for years that I wasn't at all attracted to anyone sexually or romantically, and that sex kind of grosses me out and romance and stuff about love confuses me. I just didn't know there was a name for it. I'm still trying to figure out what this means for me as a Christian woman, so I may post about that.
I'm also passionate about accessibility, technology, and disability rights, and I'm about to start my first semester of college online at Penn State University World Campus, studying for a Bachelor of Science in Information Sciences and Technology. I hope to become an accessibility tester and software developer.
Finally, I run a blog and groups for people with multiple disabilities. The blog isn't very active, but the groups are a great place for support. I have a friend who runs the Facebook group with my help, and we hope to one day turn this into a nonprofit run by and for people with multiple disabilities, as there's so little support out there for us.
Well, that's all about me. This will probably be one of my longer posts. I know the content here might not appeal to everyone. Feel free to just read some posts if you don't find everything relevant.