tumblr about my novel and support for epilepsy

Dark was the Night now available on Amazon

[onlytwitterpics]

[darkwasthenightstory]

Updated so that the Dark was the Night link is available in the bio.  Don’t forget that all proceeds go to the Epilepsy Foundation.  

How many have you had surgery or would get surgery?  This includes VNS or RNS.  

[numbepilepticlife]

Myoclonic jerks? Lol nope, they are now-

JAZZ HANDS OF PAIN

[fuckepilepsy]

What the fuck. Why didn’t I think of this? 

[thedramaticcorpse]

JAZZ EYES OF DEMONIC POSSESION

[yourlocalepileptic]

Seizures? Did you mean

Floor dance party?

[yourlocalepileptic]

this has been haunting me for weeks, so finally i made it, just in time for epilepticon and firework night!

[vintagepolvroid]

rant???

okay so fun fact i have epilepsy and it makes it really hard for me to do a lot of things that most ppl my age wanna do bc strobing/bright lights trigger my seizures and we have to stop what we’re doing because im seizing or i have a migraine and so many times ppl get annoyed with me when i get taken by surprise by a strobelight like???? i didn’t ask for this???? i didn’t know it was gonna happen????? please don’t get annoyed because oh boy i know im being an inconvenience please don’t make me feel worse than i already do?????? that’s my hot take

[fuckepilepsy]

Good take.

[yourlocalepileptic]

that is indeed a very hot take

[downbythevalleybelow-deactivate]

My techno heart beats. I’m gonna layer it with a Kesha song and do a dance remix.

DO NOT REBLOG.

[darkwasthenightstory]

This is a post from my personal blog so I don’t mind reblogging this.  A lot is currently going on, not including the end of the semester.  

Long story short, here is my amazing heart beat that is incredibly very abnormal.  I’ve been undergoing a number of tests and have more this week because apparently there is an electrical block between my heart and lungs.  I have ankylosing spondylitis and my cardiologist and rheumatologist think this malfunction is due to the AS.  Crossing my fingers it’s that.  

Anyway, I feel very sick right now so I’m on partial hiatus until the tests and semester are over with.  Please know that you are not alone and if you need anything, my inbox is always open.  Please feel free to message me and I will get back to you ASAP.    

[yourlocalepileptic]

When you have those days where it’s like ‘epilepsy who?’ And you can concentrate and life is great and then suddenly you can’t focus on anything and you just want to sleep

[jadedrosenakia]

Here is your reminder to properly tag your posts and/or reblogs with proper warnings for those with seizure disorders like epilepsy.

If you create or reblog a post with flashing images, lights, colors, or anything else flashing, Tag them.

Tag these posts with #flashing

Do not use #epilepsy warning. Either combine it into one word like so #epilepsywarning or only tag specific warnings like #flashing. Why? Because if you tag it the other way Tumblr’s broken tagging system sends it straight into epilepsy community tags and puts people in danger.

Do not add slashes or anything else to the tag. Most will not know to blacklist it like that, making it useless. (Others to not use: #epilepsy, #epilepsy tw) 

Why tag if there are options for gifs and videos to be frozen till clicked? Because without a warning in post or proper tagging we will not know if its safe or not to click them. Those settings do nothing without warnings.

[darkwasthenightstory]

I may not be active for the next few days because I am running a 100+ fever and my PCP and rheumatologist are trying to figure out what is going on.  

[autisticadvocacy]

Perspective | My disability doesn’t shorten my life expectancy. Medical rationing might.

Most of my symptoms are invisible. And if I had to go to the hospital, we would want to keep it that way for as long as possible.

“Most of my symptoms are invisible, and if I had to be hospitalized, I’d want to keep it that way as long as possible.”

[darkwasthenightstory]

What are some ways doctors can communicate better with their patients?  I’m thinking of neurologists here, but you can talk about other doctors, too.  

[darkwasthenightstory]

The first donation has been sent!  I’ll post the receipt once it is emailed to me.  Until then, here is the notification:

On behalf of the Epilepsy Foundation, thank you for your generous support. We are truly grateful. With your help, we continue to focus on epilepsy education, fund development of innovative therapies and research, and provide services to individual, groups, and communities across the nation. Without you, none of this would be possible.

We are truly grateful for your dedication to the fight to stop seizures, find a cure and overcome the challenges created by epilepsy through efforts including education, advocacy and research to accelerate ideas into therapies. Your gift means so much to so many.

Once again, thank you for your support. Please check your email for a receipt of your tax-deductible donation.

[darkwasthenightstory]

Here is the receipt (I removed my information).  Please continue purchasing or forwarding the novel for $3 since all funds go to the Epilepsy Foundation:

Epilepsy Foundation

8301 Professional Place W #230

Landover, MD 20785

Gift From:

Transaction Date:

4/21/2020

Dear ,

On behalf of the Epilepsy Foundation, thank you for your donation. For far too long, epilepsy has been misunderstood and underrecognized, endangering the lives and well-being of the 3.4 million people in the U.S. living with active epilepsy.

Your gift helps us change all of this by supporting care, education, advocacy, and research that benefits individuals and families their personal fight against epilepsy. Together, we are leading the global movement to End Epilepsy.

You have many causes to choose from, and we thank you for entrusting us with your charitable gifts to change lives affected by epilepsy and seizures now and in the future.

Sincerely,

Epilepsy Foundation

Please print the following for your records. The Epilepsy Foundation is a 501(c)(3) organization as defined by the Internal Revenue Service (52-0856660). Your gift may be tax deductible to the extent allowed by law. Please consult with your tax financial advisor. No goods or services were received in consideration for your gift.

Transaction Summary:

Organization

I am representing an organization:No

Organization Name:

Payment Method

Amount

Credit Card (Payments: $20.00 X 1)$20.00

Tribute Information: Tribute Gift Type: in honor of Tribute Name: Dark was the Night Special Message: Novel about epilepsy and for individuals with epilepsy

Tribute Notification Information: Recipient Name: Recipient Email: Recipient Street 1: Recipient Street 2: Recipient City: Recipient State: Recipient Postal Code:

ReplyForward

[darkwasthenightstory]

I will respond shortly to some other comments (I do have a day job so that comes first), but I’m curious, what are some things you all wish people knew about epilepsy?

I’ll tell you all a story in a bit!  But first, I want to hear your responses.  

[two-into-one-deactivated2020070]

I wish people knew that not every person who’s epileptic have convulsions with their seizures. I primarily have absence seizures, so unless I’m standing and fall, it’d be difficult for someone to notice I had a seizure.

Sometimes it’s just staring at nothing for a few seconds to a couple minutes.

I also wish people knew how taxing seizures are. I’ve had people just expect me to bounce right back to my normal after having a bad seizure (+ hitting my head as a result), and yet it takes months for me to feel fully better, and for anxiety attacks associated with a former seizure to fade.

[darkwasthenightstory]

I will respond shortly to some other comments (I do have a day job so that comes first), but I’m curious, what are some things you all wish people knew about epilepsy?

I’ll tell you all a story in a bit!  But first, I want to hear your responses.  

[silver-stargazing]

I wish they knew that not all epilepsy is triggered by flashing lights but that they should still be mindful of folks with photosensitive epilepsy. 

I also wish people knew that not all epilepsy has a definite cause. So many people have asked me over the years if my epilepsy was genetic or if I had an accident and it would be nice to say “I don’t know the reason for my epilepsy” and not get a million follow-up questions asking about how I don’t know.

Finally, I want people to know that not all epilepsy looks the same. A tonic-clonic seizure may seem more dramatic than an absence seizure but both types can still require medical attention when left unchecked.

[rosemyfiction]

It is not infection and they cannot be infected.

People without epilepsy may have epileptic seizure either, but this doesn’t mean they have epilepsy too. Because of it often famous people are misdiagnosed to have epilepsy like Van Gogh or Julius Caesar, meanwhile none of them had it. 

Also asking if someone wet itself during seizure is rude, not many people know it, and they definietly should learn about it. Like, c’mon I don’t ask you if you wet yourself too.

[darkwasthenightstory]

The first donation has been sent!  I’ll post the receipt once it is emailed to me.  Until then, here is the notification:

On behalf of the Epilepsy Foundation, thank you for your generous support. We are truly grateful. With your help, we continue to focus on epilepsy education, fund development of innovative therapies and research, and provide services to individual, groups, and communities across the nation. Without you, none of this would be possible.

We are truly grateful for your dedication to the fight to stop seizures, find a cure and overcome the challenges created by epilepsy through efforts including education, advocacy and research to accelerate ideas into therapies. Your gift means so much to so many.

Once again, thank you for your support. Please check your email for a receipt of your tax-deductible donation.

[disasterenergy]

this might come across as anti capitalist but,,,,,, i want to enjoy life

[andthentheywilleatthestars]

this might come across as anti capitalist but,,,,, i want everyone to enjoy life