Mama's Got a Brand New Bag

New opportunities have arisen. Now adding to my teaching gig, I've added features writer, designer, and brand manager at Epiphanies Magazine to my bag. Because of a death in the family, and because I don't want to make myself sick and screw up four months without a tonic clonic seizure- or make my smaller staring spells, which I'm trying to correct, worse, I'm attempting to take it easy, ask for help when I need it. I've managed to learn HTML coding, studied up on RSS on the train to visit friends, (I'm thinking I'm meant to write a travalogue, but I'm still recouping... travel is never never a good time to learn about a death, sudden or not.) and did off-season Latin homework for my courses, in which I cannot converse vebally, unless I'm asking a question, accidentally slipping into it, doing a translation, or catching bits of Spanish or Italian (I did manage to translate a short conversation from a British show that sounded more like, "How long can we keep this up?" "Well, with my liberal arts degree...") but hold a solid 96% in class work. I'm ensuring that I celebrate the good, too. And look forward to more of it.

As brand manager, I know getting the design as simple and memorable as possible is the best way. I had one particular design I liked, but it ended up being too much blank space, so I took the basics and simplified, after asking select people to take a look for me.

I also tried my hand at an app for Epiphanies' social media presence, and learned how to build the basic template for those. Thankfully, Como did the QR code, although that should be a cinch to learn.
Below: A QR code for the Epiphanies app, a lazy 2 hours in the making. Compared with learning Wordpress, HTML, attempting RSS, and some odd dreams from this endeavor, this was a lazy chunk of time!
I will be looking around and improving as time goes on, and am grateful for the responsibility.

Push Me, Pull You, and/or, Putting an End to Shame

How to be a caregiver/ how not to be a dick- I can't stress that more strongly, unless I put it in bold, italicized, dark red 60- point font.

1) I am not Flash Gordon when I feel something coming on. As much as I get accused of leaving people in my dust if I'm walking with them, I become rather shaky and a bit jerky in my walking movements.... Do the robot!- I find it very annoying, and occasionally painful when someone pulls me by my arm or pushes from the back. Some do this... and the shove to look around you- whereupon, you're against a wall, and thinking unkind thoughts like, "Bitch! Ask me to move or to sit for a while!" - without any conscious thought or malice. It's my responsibility to say, "I don't like that," to the pushing/ pulling, or, "I need to sit a moment,".

2) Don't ask if your friend or family member is going to have a bit of a problem, or a seizure, in a hushed, shamed voice like they just told you that they find hedgehogs listening to industrial metal with headphones to be relaxing, or like they admitted to a serious crime. I am not the most shameless person. And during my mini episodes, (8/7 central on Hulu!) I am apt to be very snippy right back. Whereas, in my "normal", I'll just be a snot.
This is also why I tend to avoid people when sick. I'm a lousy, meanly-sarcastic brute who delights in using newfound cusswords- NOT crosswords, although I love those, too-  of all nations, because I found that it tends to be a distraction/ pain reliever. There's great relief in Catallus' epic set down, which begins with "Pedicabo ego vos et irrumabo, ".

(Because Catallus means puppy, and he did tend to write love poetry, my brain seizes (no pun intended.)on a lovestruck, mischievous puppy snarling.)

Basically? Just carry on, avoid putting pressure on a person... It's one thing to say "You shouldn't be stressed," another to avoid BEING a stress. Physical force is sometimes painful and scary. Sometimes, if a stranger hugs me, it might be scary for me, not comforting, now's not the time to talk about manners. Sometimes, a person I know well- no, it always is... using force and grabbing, pulling, and shoving is scary and I'll be too shocked to do anything. This stress will lead to more symptoms.

3) if I can't hold onto anything because my hands shake, shame won't make that go away.

ETA: do NOT speak over them. Do NOT speak FOR them UNLESS THE SITUATION *ABSOLUTELY* CALLS FOR IT. In a normal conversation, people like to voice their own opinions, likes, dislikes, and anticipating is not listening. This behavior also serves to tell the person, "You are not capable, and I don't like what you say, so you will be a breathing ventriloquists' dummy." If they can't speak, then you must. Before an emergency, discuss what needs to be said, to paramedics, doctors, and\ or cops.
*Understand that "please stop" and making the patient feel guilty is harmful. 
*Understand that the patient is a human being with real feelings. Not JUST a patient. 
*Overprotective behavior is just as harmful. If I am feeling well, I might love a walk in the snow,  a hike, a trip, or bungee jumping. Being scared to let them, and making predictions and wringing your hands... Will not aid them in trusting you or feeling protected. It says "You can't." 

Thoughts on Vagueness and Comorbidity

http://youtu.be/_71kacbaXVo

Frustration with announcements that proclaim: "We know that we know NOTHING. 

EpDetect

November has been a pretty good month event wise. I've had no full-on tonic-clonics (Stiffening then relaxing of body with loss of consciousness ), but have had a few localized limb seizures that were a bit painful, all the more for being awake to witness them and to realize the limb doesn't quite soften up.

I've decided, as I don't like sitting still, and need to be out in the wide world... hey, I'm 1 in 20, and 1 of millions... there's a lot of us out there... and I need to educate... that I'm going to ensure that if I have a problem, family is alerted as soon as possible. Android has EpDetect, a free app where an alarm is set, and detects unusual movement on a wearer (this is of course, as I'm moving around, I keep it docked at home, as I like to use it for music--better volume via the charging dock.) It's one of the apps I'm not too keen to try out. You program three numbers, allow it to send your GPS signal and Google Map link, and if there's an issue, it will text 3 people for you, who can call to make sure you're ok, and/or call an ambulance for you using your coordinates.

Until other detection methods are funded by insurance, this is a great tool that can save lives and keep people from being terrified to go out there and live! To borrow from the state motto of New Hampshire, I've got to live free, or die!

Note: I seem to have high kinetic energy and triggered a few false alarms. While this works as a test, (I've warned emergency contacts, "If I don't reply back to "Are you oks and was this a false alarm, you bundle of nerves?" there's a problem, I need help." May mess with phone battery. Needs less sensitivity, better power conservation, and a less hair-temper trigger mechanism when armed.

The Purple Pumpkin Project

The Purple Pumpkin Project: 

With Halloween so near, let’s start “The Purple Pumpkin Project” to raise Epilepsy Awareness! How will you answer “Why are your pumpkins Purple?"
Description
All I am asking is to please color one of your Halloween Pumpkins Purple! Maybe have some "Seizure smart" info on hand and share your story with anyone that will listen!
Share your Purple Pumpkin Pictures, be creative!

Epilepsy affects over 3 million Americans of all ages – more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined.

Almost 500 new cases of epilepsy are diagnosed every day in the United States. That means every 4 minutes someone is hearing "It's Epilepsy."

So... this Halloween, I will be working on some form of this, although we do not get trick or treaters here... perhaps purple pumpkin cupcakes or something.

One of the major sadnesses with epilepsy is that most of the treatments are medical--- that is, using medications that can be dangerous and cause many side effects. There are many issues that can come from seizures themselves, such as confusion, anxiety, fear, trouble answering questions, death... and many preventive measures are still too expensive for many patients and their families to afford. Along with that, there are still many attitudes that may keep patients from getting help, and this is why awareness is so important. So that families do not have attitudes and fears, and so that patients can get help. So far, epilepsy tends to be a diagnosis given as "You have seizures, why?" Some patients never find out why, and even doctors may not be adequately aware.

For more information, the Purple Pumpkin Project's Facebook Page is:

The Purple Pumpkin Project

 Additional links can be found at the American Epilepsy Society

and the Epilepsy Foundation of America and its regional chapters

In the UK, please contact, Epilepsy Action UK

In Canada, help can be found at Epilepsy Canada

Courtesy of eszter, Flickriver Creative Commons License
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