27 january 2024
Medical frustration.
Everyday I have to take a pill to keep my eczema at "bad" instead of "wish I were dead" level. I get a 30 day supply, and about a week before I run out I get a message telling me it's time to request a refill. This is all done over a healthcare app. I can't order my refill too soon, it doesn't even give me the option until they notify me. I can't check a box that says "request a refill every time because if I am miraculously cured and don't need them anymore I will for sure let you know". If I don't order this right away, they won't fill my prescription in time. Even when I do order a refill the same day I get the notification like I did this time, they sometimes STILL don't get my prescription filled and I have to go a weekend or longer without treatment. It's a pre-packaged bottle of pills ffs! I've taken this medication for a long time now. With medicare these pills cost between $0 - $2k something with a huge sliding scale asterisk by the price. I pay $0 because I don't have two nickels to rub together and I feel like this is society's solution for quietly getting rid of people like me. I'm so tired of severe eczema all over my face.
Here is what I don't understand. The disability judge basically told me to "man up and get a job" in so many nice legal words. If the day before my hearing she was bitten dozens of times by mosquitoes all over and couldn't get any sleep because she was was uncontrollably itchy, nobody would be upset if she missed worked the next day and I had to see a substitute judge. But me, a person who is 10x as itchy everyday because of a disease I was born with, I'm expected to "just get a job" and not receive any assistance. And for those who see my only value as a person as my economic output, if I had some money and could afford the creams, lotions, treatments, foods, and could de-stress, my eczema would be under control like it was in my 20s and I could WORK.
I want to work, I have a list of projects to do, but when ANTS it feels like ANTS are ANTS running all over ANTS my body ANTS AHHHH ANTS it's kinda hard to focus. I'd work on environmental restoration, carbon sequestration, writing, contributing to FOSS, and my art 5 days a week for the rest of my life if they'd just let me have medical treatment and small yurt or other cheap housing.