iiinova — where your digital self keeps evolving

Epilepsy Warrior, RN @epilepsywarriorrn.bsky.social · 18/12/2024

If you didn’t have hope, you wouldn’t have found this post. Keep your hope. An online community counts as a “real community”, and we are here to support each other. #epilepsy #seizures #neurology #chronicillness #hope

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Epilepsy Warrior, RN @epilepsywarriorrn.bsky.social · 12/12/2024

The myth that seizures are related to demonic possession — or linked to religion in general

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Reposted by Epilepsy Warrior, RN

Brain Ablaze @brainablaze.bsky.social · 11/12/2024

We saw someone on the other platform make the joke that a person with #Epilepsy might swallow their tongue. It's impossible to swallow one's tongue. If you witness a seizure never put something in the person's mouth. -- What's another Epilepsy myth that should be debunked? #EpilepsyAwareness

Nobody is going to swallow their tongue. - Every doctor EVER -- A kid pokes out his tongue over a purple background.

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Epilepsy Warrior, RN @epilepsywarriorrn.bsky.social · 12/12/2024

It’s #Christmas lights season and it is a tough time for #epileptics. It is true not all of us are triggered into a #seizure immediately. However, many of us are still significantly bothered by lights. An accumulation of #sensory overload can increase the risk of a seizure. #epilepsy #neurology ✌️🎄

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Epilepsy Warrior, RN @epilepsywarriorrn.bsky.social · 10/12/2024

2. You are your historian. Physicians take account in what you tell them. Make sure you’re getting the details correct. Write them down before the appointment. If you got nervous at the appt and forgot to provide a detail; CALL BACK! They want your info. You are not bothering them. Work together. ✌️

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Epilepsy Warrior, RN @epilepsywarriorrn.bsky.social · 10/12/2024

1. This one gets real. I was misdiagnosed and written off to psych for 22 years. Then they found the presumably congenital lesion in my brain. It was #seizures and #epilepsy. My world suddenly made sense. If your treatment isn’t working for your diagnosis, kindly ask questions (…)

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Epilepsy Warrior, RN @epilepsywarriorrn.bsky.social · 09/12/2024

I really appreciate the support! It took a bit to get back on my feet, but I’m doing ok now. Wishing you the to best from across the pond. 💜

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Epilepsy Warrior, RN @epilepsywarriorrn.bsky.social · 09/12/2024

This meme is hilarious. 😂 However, for epileptics, this cartoon is not hyperbole. Our thoughts can absolutely feel scrambled and disjointed to this degree. If you feel this way, you’re not alone. This is a common symptom. But hey, let’s have a laugh together. 🤪 #epilepsy #neurology #seizures

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Epilepsy Warrior, RN @epilepsywarriorrn.bsky.social · 30/11/2024

We made it! We got through a stressful holiday! Sadly, all magic comes with a price, and I had a seizure this morning. I’m ok; it was a small focal. It happened. Seeing my fam was worth it. Every day is new & we keep going gallantly. We conquered Thanksgiving & see us prevail. #memoryloss #epilepsy

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Reposted by Epilepsy Warrior, RN

The Notorious EEG (M. Scott Perry MD) @thenotoriouseeg.bsky.social · 28/11/2024

Wishing everyone a happy, healthy, and seizure-free #Thanksgiving 🦃 #EpilepsyAwarenessMonth 💜

Purple and black turkey with a brain serving as the turkey’s body and the label “Happy Thanksgiving” across the top

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Epilepsy Warrior, RN @epilepsywarriorrn.bsky.social · 27/11/2024

I tell you, remember you were invited to the gathering. Someone wants you there (probably more than one someone). Simply considering the invite says you have hope it can go well. If you felt otherwise, you’d immediately turn down the invite. Follow your hope. Try. Don’t let memory loss isolate you.

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Epilepsy Warrior, RN @epilepsywarriorrn.bsky.social · 27/11/2024

For those with memory loss, I see you this #Thanksgiving; the anxiety you have going into tomorrow. Will you: remember faces/names, struggle to reminisce with family while pretending to know the stories, be so overwhelmed you need to leave? It’s ok to feel this anxiety. 💜 #epilepsy #memoryloss

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Epilepsy Warrior, RN @epilepsywarriorrn.bsky.social · 27/11/2024

I tell you, you were invited to the gathering - so someone wants you there (probably more than one someone). Simply considering the invite says you have hope it can go well. If you felt otherwise, you’d immediately turn the invite down. Try. Follow your hope. Do not memory loss isolate you.

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Epilepsy Warrior, RN @epilepsywarriorrn.bsky.social · 27/11/2024

This is a system that desperately needs help. It’s not fun waiting on hold for the work-from-home nurse to stop what they’re doing to pick up the call. It is also not fun to hear their kids in the background while you’re trying to convey information. For some careers, work belongs at work.

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Epilepsy Warrior, RN @epilepsywarriorrn.bsky.social · 27/11/2024

Having some seizure stuff happening tonight. I realized I’m avoiding calling my doc b/c of the clunky automated phone system - knowing it will take 15 min of verifying identity and 4+ button pushes, wondering I’m worthy of a human answering my call, then being told they will call me back… #epilepsy

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Epilepsy Warrior, RN @epilepsywarriorrn.bsky.social · 26/11/2024

You have to take care of your brain. Listen to what it needs. #epilepsy #seizures #epilepsyawareness

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Epilepsy Warrior, RN @epilepsywarriorrn.bsky.social · 23/11/2024

This is tricky. Not all physicians update their med lists. It’s always best to trust the patient first. Just because doc prescribed it, doesn’t mean patient is taking it actively.

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