Kailey
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kaileyh175.bsky.social
Kailey
@kaileyh175.bsky.social
Epilepsy and RNS advocate! 💜
have you looked at the #epilepsy feed yet on here? i use it as my main feed 💜
December 30, 2024 at 6:53 PM
that’s okay! i do too even if i don’t have a seizure. sending lots of love & support your way!! 💜💜
December 15, 2024 at 7:59 AM
yes, it’s so annoying. the subtitles are clear one moment and the next they’re super blurry. it does feel like i’m wearing the wrong pair of glasses if i watch TV sometimes 💜
December 15, 2024 at 12:08 AM
several! they started off when i was sleeping at night and eventually naps 💜
December 12, 2024 at 7:45 PM
same- when it come to #epilepsy, physical symptoms aren’t worth looking into unless the person is actually intoxicated or injured. when i had TCs, the post TC rewinded me a day back. one year, post TC i remember i kept asking when people were arriving for Thanksgiving! it was a Friday 🤦🏻‍♀️💜
December 12, 2024 at 7:37 PM
oh definitely!! fast paced games stress me out. playing Rocket League one time induced a seizure so i stick with calm games like the Sims or Animal Crossing 💜
December 4, 2024 at 9:39 PM
the only time they will shave your hair is if you have surgery. they do it while you’re under anesthesia and it’s a small area usually. they actually tell you not to shave your hair yourself before
December 3, 2024 at 10:45 PM
•keep emergency meds with you wherever you go, even if it’s a holiday party!
•not feeling well? it is 100% okay to stay at home
December 1, 2024 at 8:58 PM
note that i have told the host that they could induce #seizures in those who are photosensitive when they asked for feedback. lots of ableists on that app sadly 🙁💜
December 1, 2024 at 8:13 PM
love this list! as someone who had surgery, i would also add tapering off some medications (if applicable) 💜
December 1, 2024 at 7:47 PM
in my city, they made a play/musical and it was awesome and safe for those with photosensitive #epilepsy! but i agree, nothing beats the true story in the book. the new Wicked has some plot holes too so i plan on listening to the audiobook
November 28, 2024 at 5:52 AM
went to see it one at a tiny theater (closed down) and there was no warning at all!! not photosensitive but i ended up seizing. apparently the theater cropped it out. love going to the movies but streaming is WAY safer 💜
November 28, 2024 at 5:38 AM
Reposted by Kailey
I read the original book, it's an excellent story, if you can't watch the movie you can enjoy the book
November 27, 2024 at 7:24 AM
yes! my mom and i love the book! it’s a great alternative- also, the soundtrack is available on iTunes, Spotify, etc.

thanks for posting the book! might read it again to compare actually 😊💜
November 28, 2024 at 5:17 AM
i pack a day’s worth of meds in my backpack, wear comfy clothes, and tell my travel companions when i go to the bathroom 💜
November 28, 2024 at 12:54 AM
yup they also fake seizures for attention sadly. i had to delete the app- no intention on going on there ever again
November 27, 2024 at 12:58 AM
no problem! i used it as an example in one of my classes to show lack of understanding in regards to epilepsy 💜
November 26, 2024 at 10:02 AM
don’t have the best representation but here is the worst imo from Grey’s Anatomy

youtu.be/HZwb9k14tzw?...
Emergency Medicine Review (Doc Thoughts) -- "Grey's Anatomy" Seizure and Code Management
YouTube video by Doctor Grumpy
youtu.be
November 26, 2024 at 3:03 AM
that’s why i chose it for the feed- it’s a sign of support to me 💜💜
November 25, 2024 at 11:03 PM