All right! Started a new anti-epilepsy drug. Here's hoping it keeps me free of seizures for as long as I'm progression free in terms of the cancer treatment. Being free of seizures would improve my quality of life by magnitudes! And it'd be nice to have years where I can actually live my life to some degree. Hoooo boy does the drug make me drowsy, though! But I can cope with naps!
#braincancer #epilepsyImagine being so deluded you think only 10% of the people in a crowd are booing you when people can load the fucking video and hear you're full of shit. Also, fuck D*ve Ch*pp*ll*. What a has-been hack and purveyor of bigotry and now fascism it seems. What a fall from fucking grace these past years have been.
With that, I've learned to better space out tasks, fill time with easier tasks, and recover with more naps. Hoping a more urgent neurology referral will also help with the meds to make that all even more effective.
Next step is to make it through five and a half more weeks of radiation before chemo. Each day and step at a time.
#braincancer #epilepsy #weforgeahead
Good day today after a rough day yesterday. It's crazy to say even running clippers over one's hair is a difficult task, but it is when your anti-epilepsy drugs need adjusting, you have titanium hardware in your skull, and a tumor and/or surgery healing causing brain edema.
I did much less yesterday and had a worse day than today. I couldn't even dish myself dinner, lest I risk a focal seizure.
It's even worse than I thought. The web version doesn't even save your cookie preferences, and the app doesn't even save the default push settings you want (I had to turn off the notifications in Android's system settings, not the app's).
Patreon needs to update its architecture. One can't even turn off email notifications without waiting for "Saving..." on the web version to complete after ~10 seconds for each setting. Meanwhile, the Android app straight up crashes if one tries to turn off push notifications once you hit a certain threshold of followed creators. Nevermind the default on status for *everything* making it annoying to curate. At this point, everything is just going off. Sorry, creators. Not your fault.
With the email stuff done, and the room sorted, I should be able to finish working on setting up OBS for streaming at get started on that, hopefully to eventually use the platform to spread awareness about brain and other CNS tumors once I settle into a groove with various games. It'll be a long process getting to that point, but having low grade hopefully means I can maintain cognitive abilities to be an advocate for some time, even if just for a tiny audience.
On my priorities as cancer treatment rolls into the rougher patches, I managed to shrink my main email account from thousands just sitting in my inbox (many unread) down to less than 100 (to be sorted/archived tomorrow). Should make it easier to stay on top of things. Next is room organization, in case I lose more mobility during the course of treatment. Then I can focus on treatment, appts, daily care, disability stuff (with the aid of a social worker), and have some time for hobbies between.
With that in mind, if Elon were to give up and sell the site to someone with common sense (someone who rehires a trust and safety team that ACTUALLY does something about reports again for clearly bigoted shit, re-bans bad actors, etc.), I'd probably ditch here and go back simply for that sake.
Until then, here I am.
With Hive being such a small dev team that also doesn't have a solid maintenance protocol to avoid extensive downtime for updates (being down for nearly a week), my other social media, particularly here and Tumblr, is probably going to get more cross-posting than I had originally intended.
That said, I hate the lack of visibility on mobile with servers being fractured here. The inability to see people's full following lists to make connections is infuriating.
