#weird vns problems

[the-twitchy-life]

That “I’m bored and trying sooo hard to procrastinate because I have a hard thing to do and I don’t want to start” feeling where you’re literally wiggling the VNS around in your chest because it feels weird and it means you can distract yourself from that thing that you’re SO CLOSE to having to do...

(does anyone else play with their vns/poke the electrodey bit when they’re bored?  Just me?  cool.)

[the-twitchy-life]

VNS and the TSA

(and how’s that for acronym-to-word ratio?)

So travel update:

The VNS doesn’t cause any trouble on domestic flights in the US.  The airports I flew through didn’t even use metal detectors for adults (only kids and pets).  Adults walk into this machine where you hold your hands above your head and spread your legs so they can see through your clothes and take nudes of you.

(I hate that these even exist.)

Those see-you-naked machines don’t give a shit about a VNS, and the vagal nerve stimulator doesn’t give a shit about them.  I, however, was not okay with the TSA getting my nudes, so I opted for a pat-down.  I ended up standing by for about 10 minutes while they summoned a lady TSA officer to grope me.

She was very professional and even friendly, but like, she was still getting her hands ALL the fuck over my body, so, awkward.  

I did have to tell the Friendly Neighborhood Groper where the VNS was and what shape it was, so she could be sure it wasn’t... idk, a wad of cocaine strapped to my body.

On the way back we didn’t have enough time for me to wait for a woman agent, so now the TSA knows what I look like naked.  You’re welcome, fuckers.

I actually forgot to take the magnet bracelet off when I went through the see-you-naked machine, but I guess they figured it was a watch and didn’t care.  So much for our big expensive machines.

TL;DR: you don’t have anything to worry about, tell them you have a medical device, as long as it’s the see-you-naked machine you can go through just like everyone else, but now they’ve all seen you naked.

‘Murrica!

[the-twitchy-life]

Job hunting stuff

I had an interview with a job agency recently, and it was my first in-person interview since having the VNS surgery.  

I’m not ashamed of my surgery scars, but I’m very aware of how discrimination works, even in well-meaning people.  And it’s pretty clear that I have a medical implant, what with it sticking out right under my collarbone.

The job agent didn’t comment.  She’s not allowed to by law.

But I also wore a jacket that mostly covered the scar and VNS bump, and I took my medical alert/Pride bracelet off.  Some folks prefer to tell employers right out front... I prefer to tell HR once I’m hired.  Maybe it’s cowardly, but I think of it as pragmatic.

[the-twitchy-life]

gotta love that “I let a puppy chew on my VNS bracelet strap and now I need to stitch a new strap for my VNS magnet... but my tendonitis is acting up and I shouldn’t sew” feel.

C’mon guys, it was a really cute puppy.  SURELY the disability gods could cut me some slack here.

[image description: a grey pitbull puppy sits on a black sofa that forms the background of the photo.  She’s wearing a purple harness, sitting in front of a floral pillow.  In front of her is a black strap with a watch-style clasp at one end.]

The culprit: a Good Girl named Onyx. She’s three months old and teething, so I let her chew on my sturdy bracelet strap, while I kept the magnet in my pocket.  And then I left without the strap.  Oops.

Well. If I sew one inch per day, and I have six inches of sewing left... 

[the-twitchy-life]

A kid hit me in the VNS with this big water squirter thing- it’s a tube 3 feet long that siphons up water, and when you push the end up it shoots water like a giant syringe.

And anyways I did a good job of not yelling but like- hard plastic!  Right in the metal bits! Ow!

Being a cyborg is not easy.

[the-twitchy-life]

I would love to stop being queasy now....

[the-twitchy-life]

DUDE so Goober figures out everything VNS-y before me.  

I am reluctant to chalk stuff up to the VNS because I don’t want to be all, “epilepsy is my entire life and all my problems are from my disability.” 

He figured out that my evening nausea spells were from the VNS turning on, and I figured the other missing ‘why’: it’s when I don’t eat enough dinner.  It seems like I’m ALWAYS hungry!  But then I sit down to eat and feel full really fast.  And it turns out....  it’s the combo of exercise and the VNS.

The VNS has been shown in to decrease appetite.  People generally lose a little weight, and now they’re using the VNS to treat obesity. 

So I’m exercising, needing more food, and then the VNS blocks my hunger, or turns it into nausea! And then when I eat I get full super fast, because VNS.

WHY DOES NOBODY TELL ME THESE THINGS???

I should go study all this stuff myself.  I’m telling you, so maybe y’all won’t have to study it too.  Trippy.

Studies:

1.(Hard to understand) http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0044813

2.(Easier) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4455432/

3.(Easiest: about VNS used for weight loss)   https://www.npr.org/sections/health-shots/2015/01/16/377428448/a-weight-loss-device-aims-to-curb-hunger-by-zapping-a-nerve

[the-twitchy-life]

Planning a Twitchy/Goober-friendly wedding

Goober and I are planning to have a very Millenial wedding, doing everything cheap/free as we go about killing the wedding industry.

Down with the institutionalization of romance!  Up with weird countercultural stuff that embraces non-traditional people and varying levels of ability!

-No booze, since neither of us can drink more than a glass anyways

-We’re having it during the day, bc seizures happen when I don’t sleep

-Summer wedding, bc we are NOT dealing with this during the winter weepies

I’m sort of wondering what to do about the VNS during the ceremony- if it goes off mid-vows, will I stop until my voice comes back? (It makes my voice get hoarse and quiet when it turns on.) 

Should I tape the magnet to my chest during the ceremony, like I do while I’m running?  Should I wear a higher-neck dress and stitch in a little pocket for the magnet, so I don’t have to tape it?  Wear a magnetic necklace?  Or do I wear whatever dress, leave it uncovered, and speak through the hoarseness, because that’s who I am?  The possibilities are endless.

Shit you didn’t think to plan for in your pretty-princess daydreams: VNS scars.