Below is mostly copied and pasted from my instagram. Since I don't get to my blog much, I've been most active there and using myinstagram to mini-blog, share musings, thoughts about my condition, my travels and art. Feel free to follow me on instagram @kamredlawsk

I'm still working on follow-up parts to my last blog: What Is in a Year: What Is Chronic? 

I want to finish an illustration I'm working on to accompany the posts. In short, the past few weeks I've been proactive and very busy with setting up necessary medical visits, more testing, changing my lifestyle, ordering equipment I need to assist this progression, seeking natural alternatives to accentuate western medicine and the like. Due to being proactive and some natural healing that I've engaged with, my world has changed the last few days. It's been a very long year but I believe I'm on the slow road to recovery. My outlook is much better and I am working towards the future. In all times of struggle, look for the beautiful for it's all around us.

“I spent my weekend celebrating my birthday early. Every year I usually try something new, particularly scary, to celebrate another year like skydiving, parasailing, scuba diving or some big road trip. It’s a way for me to fight back against this progressive condition and welcome another year of it.

Since 2018 has been rough I opted for an anonymous quiet hotel-cation and relaxed. I guess that is something new for me?

I mostly spent my weekend living in and loving my room’s accessible roll-in shower. We are currently saving so we can make my own bathroom accessible. Due to the progression, it’s getting harder to get ready and get in and out of the bathtub so it was nice showering without the pain and discomfort of transfers.

People don’t realize every moment needs to be catered when you’re disabled and can’t move, and making those trivial moments accessible usually costs thousands...for every moment you try to make accessible just so you can live somewhat like a “normal” person.

“Little things that matter” is literally true for me and others like me. Being disabled is not a choice nor of my own doing but the reason doesn’t matter when it comes to having to live day by day in a world that isn’t built for me. This world is very expensive and unwavering. For example my wheelchair costs as much as a car and medical insurance certainly battles me every single time and in the end I up paying thousands out of pocket.

So far those who think the sick and disabled want a handout, they’re not getting the entire picture because I would give anything to be able to walk and not deal with the world of doctors, insurance and disability.

On the way home we stopped by #theflowerfields so I still got a little nature for my heart ❤️. No flowers were hurt in taking this picture 😉.”