Kailey @kaileyh175.bsky.social · 30/12/2024have you looked at the #epilepsy feed yet on here? i use it as my main feed 💜 010
Kailey @kaileyh175.bsky.social · 27/12/2024here’s a sneak peek of my purple Christmas tree!! 💜 i noticed that since last year, one house in my neighborhood did red for AIDS 🫶🏻 062
Kailey @kaileyh175.bsky.social · 15/12/2024that’s okay! i do too even if i don’t have a seizure. sending lots of love & support your way!! 💜💜 110
Kailey @kaileyh175.bsky.social · 15/12/2024can we all collectively agree not to compare #epilepsy to other medical conditions when advocating or spreading awareness? each experience with a medical condition is different 💜 1120
Kailey @kaileyh175.bsky.social · 15/12/2024yes, 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 💜 010
Kailey @kaileyh175.bsky.social · 12/12/2024several! they started off when i was sleeping at night and eventually naps 💜 020
Kailey @kaileyh175.bsky.social · 12/12/2024same- 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 🤦🏻♀️💜 220
Kailey @kaileyh175.bsky.social · 11/12/2024i once got accused of being on drugs (by another person with #epilepsy) because my pupils were dilated 🤦🏻♀️ i had just started another medication and got maybe 5-6 hours of sleep 280
Kailey @kaileyh175.bsky.social · 04/12/2024oh 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 💜 110
Kailey @kaileyh175.bsky.social · 03/12/2024the 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 120
Kailey @kaileyh175.bsky.social · 01/12/2024•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 031
Kailey @kaileyh175.bsky.social · 01/12/2024note 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 🙁💜 030
Kailey @kaileyh175.bsky.social · 01/12/2024if you shop on Poshmark and watch the lives, please be careful!! they are coming out with unnecessary graphics that strobe and move fast. shop carefully 💜 130
Kailey @kaileyh175.bsky.social · 01/12/2024love this list! as someone who had surgery, i would also add tapering off some medications (if applicable) 💜 110
Kailey @kaileyh175.bsky.social · 28/11/2024in 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 000
Kailey @kaileyh175.bsky.social · 28/11/2024went 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 💜 020
Reposted by KaileyLori Jaye 🪶🐈⬛🇬🇱🥄 @kittypurr1.bsky.social · 27/11/2024I read the original book, it's an excellent story, if you can't watch the movie you can enjoy the book 121
Kailey @kaileyh175.bsky.social · 28/11/2024yes! 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 😊💜 110
Kailey @kaileyh175.bsky.social · 28/11/2024if you’re an iPhone user and have auras before a #seizure, ask Siri to time it if you are alone! 💜💜 040
Kailey @kaileyh175.bsky.social · 28/11/2024i pack a day’s worth of meds in my backpack, wear comfy clothes, and tell my travel companions when i go to the bathroom 💜 110
Kailey @kaileyh175.bsky.social · 27/11/2024yup they also fake seizures for attention sadly. i had to delete the app- no intention on going on there ever again 010
Kailey @kaileyh175.bsky.social · 27/11/2024if you have photosensitive #epilepsy, it may not be best to watch the movie Wicked as there were some flashing lights in the musical/movie 💜 282
Kailey @kaileyh175.bsky.social · 26/11/2024no problem! i used it as an example in one of my classes to show lack of understanding in regards to epilepsy 💜 010
Kailey @kaileyh175.bsky.social · 26/11/2024don’t have the best representation but here is the worst imo from Grey’s Anatomy youtu.be/HZwb9k14tzw?...youtu.beEmergency Medicine Review (Doc Thoughts) -- "Grey's Anatomy" Seizure and Code ManagementYouTube video by Doctor Grumpy 220
Kailey @kaileyh175.bsky.social · 25/11/2024that’s why i chose it for the feed- it’s a sign of support to me 💜💜 110
Kailey @kaileyh175.bsky.social · 25/11/2024i’d say sometimes my appetite disappears due to my meds for a bit and randomly comes back. if i don’t swallow the pill fully, it kinda dissolves and leaves a bitter taste 💜 110
Kailey @kaileyh175.bsky.social · 24/11/2024this can be understandable in some cases but having #epilepsy itself can be traumatizing for anyone, especially parents and entire families. keep in mind, not everyone with epilepsy has siblings 💜 070
Kailey @kaileyh175.bsky.social · 23/11/2024if you haven’t yet, please join the #epilepsy feed! my boyfriend and i created it for #epilepsyawareness month for the community on here 💜🫶🏻 040
Kailey @kaileyh175.bsky.social · 23/11/2024yay!! for those wondering where @brainablaze.bsky.social has been in the #Epilepsy feed, we just added them!!! all of their posts will automatically show up 💜 160
Kailey @kaileyh175.bsky.social · 22/11/2024thank you!! consider it a gift from us to raise #epilepsyawareness on this platform better as it’s well needed! 💜 130
Kailey @kaileyh175.bsky.social · 22/11/2024thank you! i was in 2 different feeds regarding disabilities, yet no one really posted about #epilepsy. thought that it would be great for the community if i were to make one for us! 💜 110
Kailey @kaileyh175.bsky.social · 22/11/2024thank you! we just want to help the #epilepsy community on BlueSky ☺️💜 130
Kailey @kaileyh175.bsky.social · 22/11/2024the #epilepsy feed is officially up!!! yay!! my wonderful boyfriend @dkhmora.bsky.social helped create it! have fun raising #epilepsyawareness with me!! 💜 3205
Kailey @kaileyh175.bsky.social · 22/11/2024he told me he isn’t joining sadly. could change in the future though. HOWEVER i am doing my best to create a feed here for those with epilepsy or caring for them. 💜 130
Kailey @kaileyh175.bsky.social · 22/11/2024it happens to almost all of us sadly. if it makes you feel any better, i once accidentally took my night meds (sleepy meds) in the morning. missed the entire day sleeping 💜 000
Kailey @kaileyh175.bsky.social · 22/11/2024same here!! not much for me to log nowadays except medication reminders though 💜 120
Kailey @kaileyh175.bsky.social · 22/11/2024my gosh 3 months!! hoping for the best outcome for you! definitely need more!! 💜🫶🏻 100
Kailey @kaileyh175.bsky.social · 22/11/2024wow 60 is a lot!!!! definitely not your fault. i lose track of time some days so 2 alarms + reminders + Epsy notification = medtime for me. 💜 200
Kailey @kaileyh175.bsky.social · 22/11/2024taking your medication(s) for #epilepsy on time is crucial to prevent a seizure and SUDEP! have you ever missed your meds or forgot? 💜 5100
Reposted by KaileyBriana Mills, LMFT ♿️🏳️🌈 @brianamillslmft.bsky.social · 21/11/2024Disabled people are worth protecting. Period. 9789221
Kailey @kaileyh175.bsky.social · 21/11/2024i love the moderation here way better too! great you’re still spreading awareness 💜 010
Kailey @kaileyh175.bsky.social · 21/11/2024thank you. every now and then she would wear a wrist brace from Amazon. she’s in her 60s but i know it can happen to anyone regardless of age 000
Kailey @kaileyh175.bsky.social · 21/11/2024no problem! just don’t want that to happen to anyone else. 💜 110
Kailey @kaileyh175.bsky.social · 21/11/2024if it hurts, i would take a break tonight. my mom would constantly knit and almost ended up with carpal tunnel on her dominant hand. hope you feel better soon and back at quilting! 110
Kailey @kaileyh175.bsky.social · 21/11/2024yeah i get that. with this feed, it’s all epilepsy related content from various accounts. i can ban them if they post a gif or video too 110
