Christmas, 1989

The appropriate time to sing "Hail, hail the gang's all here"?
As usual, bangs were bigger than the girl... can't say much about the goofy smile... I was 6, my permanent teeth were still too big for me!

Getting To the Nitty Gritty

The hardest part of doing epilepsy education AND trying not to depersonalize is when you get to those "icky" details.Gotta get past that. I still need to, for my sake, get past saying "The brain operates like a faulty CPU" and perhaps say, "MY brain can occasionally function like a faulty CPU". That I see it in terms of broken lines and machinery  may be the gift of Dr. Frost, who I need to shake off, influence wise. Somewhere though, a neurologist weeps into their pillow, asking where this difficult and always questioning patient came from, and why them.

Lately, I've heard "Migralepsy" tossed around. What causes what, and which triggers which? It's a nice sticky little question, and any theories, which I can base on somewhat solid (And with apologies to the head that once struck a sidewalk due to careless drunk now-ex-boyfriend,) concrete, but still rather cloudy hypothesis. And any theory is only as good as the answers that support it. At 8, I began having severe headaches. I was taking adult pain pills while weighing in at 60 lbs to kill the pain. They thought glasses might help, then a period in sunglasses part of the day (which actually did,) and evidence suggests that migraines and epilepsy do walk together in a demonic duo, to the point where a google search on the new compound word, "Migralepsy"  is longer than I am.

What am I doing? Trying to live. To find relief, to celebrate the good... when I've had no tonic clonics, when I haven't been messed up too badly. Going for a month, and so forth, without any symptoms, even localized.

Also, getting real here:
1)Please know, an epileptic may bite their tongue horribly (I think I have perma teeth marks in mine), but it is absolutely impossible to swallow your tongue. I've demonstrated, but it's a bit disgusting. Placing anything in the mouth, Popsicle sticks, wallets, fingers (You do that at your own risk, and please, don't!) will simply hurt the person more, fingers get bitten, and some things can lead to dental breakage or other injury.
2)During tonic-clonics, have dry clothes and patience and kindness handy. Accidents happen. Everything tightens and then loosens, and I can't tell you what it's like to wake up freezing in an ER and have THAT told to you. It may not always happen, but it can be rough on anyone. And some nurses really don't know how to give an answer to "Where are my clothes, and why am I wearing only a blanket?" delicately.
3)Patient may be thirsty. I usually am. Give fluids as soon as it's safe.
4)In my case, I always like to have a blanket after, but not a pillow. I will be tired, stuttery, and if I have to walk, it will look like you should be singing, "What should we do with a drunken Bethy?" I may be cranky, and
5)yes... it hurts. I think the part I hate about localized seizures I'm awake for, is that I know exactly what's going on, and it hurts like hell...plus, not being able to control a limb sort of hurts when it's stiff and yet flappy.

So there's MY basics at least. I am trying to learn to say "MY brain" and not to refer to myself as a broken machine. I'm not broken, and while I could say "The wires slip", it's not right... because that depersonalizes. Here and there I need to depersonalize, but sometimes, it can actually hurt me. And I need to learn to say "It doesn't have me... but I am dealing with this." I wanted to separate... This doesn't have me, I am better than this... this is not me, which is true. But disconnecting from my own brain is what I'm trying not to do.

The Zen List

The Zen List was created because, when trying to focus past the static, as Rev. Jack put it, the full silence had me distracted and unable to focus.

The Saturday before last, I tried the Bach Experiment, which worked well... except for a tiny snafu at the end, which I'll explain.

I started with Yo Yo Ma playing The Cello Suite 1 in G Major. This one is pretty basic, most of us have heard of it. I use the longer version.

Unfortunately, when I became calm, this popped up on shuffle. Mind you, this is based on a drug induced nightmare where a man kills his girlfriend, is executed, goes to hell, and attends a black mass. Knowing that and hearing the weird notes, I jumped a mile before I could correct myself! So that I didn't run the risk of having something inappropriate pop up from 600+ songs, I made a special list.


The list I made, which is set up to change order depending on my needs for the day, contains some songs with Hindu influences (Song For The Divine Mother of The Universe) one that is really for dancing, but is calming for me played softly, and some classical throughout.

  Fire With Fire-The Scissor Sisters
 Pachebel's Canon in D Major-Gee Trax (Almost 7 minutes of bliss.) 
The Older I Get-(Acoustic)-Skillet (Quite soft.) 
The Cello Suites in G Major-Yo Yo Ma 
Three Little Birds-Bob Marley 
Redemption Song-Bob Marley
Dear Prudence-The Beatles 
Blackbird-The Beatles
Song For the Divine Mother of the Universe- Ben Lee


 

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.

Sweeney Todd Goes Vegan

There was a post about less interesting movies, I played with it, still coming up with vegan/vegetarian lyrics to "Have A Little Priest" which I do sing in the shower actually "The history of the world, my love, is those below serving those up above. How gratifying for once to know, that those above will serve those down below!"

Sweeney Todd decides to teach everyone about veganism, and Mrs.Lovitt makes kale pies. What a yawner.
So far, the veggie lyrics just aren't working, and I can't destroy "A Little Priest", which, is indeed about cannibalism... (Lawyer's rather nice... order something else though to follow since no one should have to swallow it twice.)

But is such a gosh-darned fun song and dare I say it, rather---true? I tried answering "Anything that's lean?" differently, but couldn't. = )

We Make Our Own Traditions

Once a year, it's Martha's Living, glossy food porn with vivid cranberries that just cannot be naturally colored, yams overflowing with marshmallows, the turkey, dear God, the turkey, and the football.

But sometimes, we forget the people. This year, I'm having a nice dinner out with Mom, and hopefully with G & C.
We were discussing it... we've made our own traditions... love... good food, free from allergens and gluten, lots of laughter, cameras after we eat, coffee, blazing hot and tickling our noses with its' aroma. Not quite a Christmas Story Chinese restaurant dinner... (thank heavens... I can't eat if it's looking at me, either.) but as G. eloquently put it, "Traditions are for old people. We are hot young ladies." And we hot young ladies make our own traditions.

Already, it's easy to be overwhelmed... decor is already up, and people complain ad nauseum.
It's already a crazy world. While I cling to some things... the Advent wreath... the innocent little things... oh sweet little Flower-the-Skunk---oh, sweet Grover---a reminder of klutzes trying, gosh darn it! And making people smiling-so, success! I am making my own way, my own path, my own traditions, as I go. See me grow.

Just a Little Easier

It's been a time of great stress... paperwork, crises, the need to heal, the need to do something, the scheduling, the list making.

First up: the apps I recommend:

Grocery lists, white-boarding (everyone needs a white board on occasion, right? Of course, right.)

Evernote- for computers, and on mobile (I don't leave home without it, it's nice to have an easily edited shopping list that I can work with, and no paper to lose.) It also includes Skitch, which works well as a mini white board, to communicate, have fun, illustrate points, or to speak when my voice is having a funky moment.

Insight Timer- it's a crazy, crazy world and it helps to smell the roses. As the philosophers say, "If you have no spare time, that's when you need to take time out the most"-paraphrased.

Now that I am able to...and have time to... relax... I am too keyed up, but am working on getting back down. It happens. A lot happened this week, it's bound to happen.

Happy Belated Birthday, Grandma

Dear Grandma,
I don't remember the last bits... or, rather, I do... but those pale in comparison to the spry, sprightly woman I know... who had her newspaper, her coffee, perked, the old-fashioned way, on the stove, thank you, very, much, as the drip coffee "tastes like shit" (I still smile... so ladylike... but here and there, you managed to sound like a truck driver! And then you beamed as sweet and innocent as you please...)

You had your card games, your slightly off-color jokes, you needed to get out and travel. You had your perfumes...
The new formulation of Miss Dior smells nothing like I know, Grandma... I got a whiff.. I remember it on you, strong, dry, sweet, with a hint of something...else. My nose didn't know sexy yet. You wore "sexy" perfume. I just knew my grandma.

I've moved, Grandma. So many times, I picked up the phone, dialed that familiar number... "Grandma! Let's celebrate!" I remembered my first taste of wine, both sweet and dry, out of your hand... and I remembered...

Grandma, it gets better...day by day. I know, in a way, part of you is still with me.
I know you're better.
I miss you.
I love you.
Happy 83'rd birthday. It took me awhile. My heart, my mind... aren't at rest just yet. I love you. I always will.

Bad camera...blue in sunlight. Me, squinting at sunlight. Grandma, before first round of radiation.

Dear POTUS,

A rant in which I got too hot-collared and possibly far beyond the usual scope to use as a status.

If you're bothered by political rants, I'd suggest you click out. There is a red X, top right hand corner. Fair warning. I swear. A lot. I am not nice.

My goodness, POTUS, how's that hope, change, brighter future, a pot for everyone to piss in, and whiskey for every bum plan workin' out? Am I aggravated by another long-time exec taking a nosedive? Hell yes! Am I aggravated that nothing, from what I can see, has really happened yet? You betcha! How much longer are we expected to "muddle through somehow"? You can tell me where to go all you like... I have nothing against any party... I'm steaming mad! I will be attempting to keep this from being heavily in circulation... but... WHERE THE FUCK DOES IT END?! I don't think the change is supposed to be coins tossed for freakin' busking! I don't know how many times I can sing "Blowin' In The Wind" on a Godforsaken street corner! I think it was supposed to be our president doing his goddamn job! That's right! For a quarter mil, you look over bills from both house and senate, sign or veto, talk to leaders, and try to keep us from imploding at the same time you ensure we don't explode!
So a woman who works her ass of for fucking years, holding down her executive job, while fighting MRSA, with a child with dietary issues, who is in a charter school because while he is super intelligent, his race almost let him fall through the cracks in a racist school district?! In 21st Century America?! She fought to own a house, fought hearing disorders, speech disorders, holds two masters degrees, and now is struggling to pay $700 on a car she desperately needs when the brakes failed at an inopportune time?! No, POTUS. Your job was to help keep your people from imploding. From being hurt. So many are being tossed to the wayside in a few short days.

How many times can one man laugh, until he can hear people cry
How many times can a man turn his hand, pretending he just doesn't see... 

See... I tried to keep myself to myself. While I made no secret... if asked, no, I do not, absolutely not, support Barack Obama. I cannot. It wasn't color, it was that when you open your mouth POTUS, lies fall out!
But no more. While I was not a Red State supporter either, I was hoping to see Rommney do something. Say something.
In all things, though, I remain that frustrated, edgy-from- research and consistent political talk, edgy from seeing people I care about thrown to wolves by those who SHOULD be working for them, Libertarian. Who is banging her head against a wall in frustration.

PSA: On Drive-By-Perfumings

Note: I have a favorite perfume that I wear with almost anything. There's a trick: I picked a very light perfume, with a clean formulation, in the first place. The idea is to spray on the pressure, pulse, or "heat" points... wrists, back of ears (a touch) little in hair, some under shirt... just a very light hand on the sprayer. And pick quality. The $2 plastic bottle of "Vanilla Serenade" from Bed Bath and Beyond not only clogs after one use but smells really cloying.

"In view of recent perfumings, I feel obligated to perform this public service. Perfume/ cologne is an enhancement product, not a be/all-end-all. You don't wear all of your sweaters and hats at once, do you? The logical step is to pick one high-quality product. Generally, a LIGHT spray on the undersides of wrists, or behind ears, in "pressure zones", or on a clean cloth will do and people will not smell you before they see you, will like what they smell, but will remember you and not Eau De Sweet Jesus, What The Heck, My Eyes Are Watering. Many companies make lines consisting of ultra light variations of scent in perfumes, soaps, shampoos, etc. I do not recommend such things for amateurs. Pick one formulation, wear it lightly and run with it."

For heavier scents, like "My Sin" (do they still make that?) or Opium, I'd suggest an even lighter touch. It's you that you want people to know, not your scent trail. Those of us in the Buffalo area still have nightmares about Kaufman's and its' well-dressed, beaming Perfume Sprayer...and the need for a burst of fresh air.

Mystic Spiral

I like this photo... it is a good illustration of upward and downward spirals... of contentment and sadness.
Sometimes, I need to "show" what I'm trying to say... because sometimes I can't point out what I'm feeling in words. And the numerical scales sort of suck. I saw one pain scale where "10" was expressed as, "Oh, dear, I'm feeling just dreadful"... I don't know anyone, other than me, who would actually say that to a doctor out loud, it sounds like a "British Stiff-Upper-Lip-ism".

But this works. I think I can figure out how to pinpoint from here and move on.

I Shall Call Him Squishy, and He Shall Be Mine, and He Shall Be My Squishy

My mother's dog, Dixie, a five year old chocolate lab/Australian shepherd mix with shaggy light brown fur, a sweet, boisterous personality, and a need to explore, is also apparently quite the little minx. Last night, she surprised my mother and stepfather with four 100% purebred mongrel puppies, with the likely father being a gentle, affectionate, 100 pound bull mastiff named Duke. I am hoping to get photos of them as they get themselves together, although I know I can't have a puppy just yet and I'll fall in love with one of the shaggy, big-footed pups and try to make him or her my Squishy.

I shall call him Squishy, and he shall be mine, and he shall be my Squishy_Dory, Finding Nemo

On the other hand, a big goal (2.5-5 years.) is to have a small place where I can have my own. I am considering a basenji, not just for lack of shedding, but from having been around and noting the sweet, playful personality. Not to mention ears that can pick up Radio Free Europe.

And here is the proud mother, many years and many cameras ago.

Congratulations, Miss Dixie!

Seeing Past the Static

I'm not the type of person who is able to simply sit for hours in lotus position (however, I have found, I am actually capable of getting into the Lotus, which I was curious about.) ---ohhhhhhhhhhhhming.

In my talks with Reverend Jack, he's been teaching me how to focus--- to meditate. I use a combination method of my own. It's being fine-tuned a bit. I use a few tools. Insight Timer, a tool on my phone, my rosary bracelet, and many times Ben Lee's Song For the Divine Mother of the Universe- as the buzzing air around me as I try to focus past the problems, past the "static" (think of it like looking at snow or static on a TV screen, and look past it. I'm getting past doing a sort of odd, dead-eyed Thousand Yard Stare.).

I pray, no chanting. I simply take time for that recharging.
I'm getting there.

There is nothing wrong with your television set. Do not attempt to adjust the picture. We are controlling transmission. If we wish to make it louder, we will bring up the volume. If we wish to make it softer, we will tune it to a whisper. We will control the horizontal. We will control the vertical. We can roll the image, make it flutter. We can change the focus to a soft blur or sharpen it to crystal clarity.-Outer Limits intro

Creature Comforts

The Frisky published a list of the things that comfort in times of extreme stress... while some are consistent, no two people have the exact same comforts.

For me:

1)Chicken and rice soup, with Tinkyada Little Dreams noodles (brown rice pasta in the shape of various childrens' toys.)

2)Cracker's Darling One- so much, I got fed up with bad sound when I couldn't find decent recordings... anywhere. 
Why don't you rest your weary head, darling one, sweetheart...

3)Butterflies. Just thinking of those bright wings and how happy I am to see them in the spring, makes me happy.

4)Something as silly and absolutely off the wall as this, from writer John Devore: "It's a giant furless hand that thrusts itself up into our guts and makes us say insipid things!" - Muppet conspiracy theorist
I laughed good and hard at that, and I needed it too... the week has been a mess... my bloodwork papers got lost, I have no high hopes for my appointment in December, I automatically said "yes" to being a guinea pig for a 6'5" student dental hygenist later in the month, still getting in touch with neuro, friend Pastor Chris landed in hospital with possible stress induced heart attack at 28 years old... and watching the election tear at people... Oh, God... yes, it's been a fantastically shitty mess and I needed a good giggle.

5)That first sip of coffee, holding the mug between your hands on a cold day, feeling the steam hit your nose.

6)Knowing that I am learning to relax, sort of, with meditation... with rosary beads, turning them and working them... focusing, seeing past the static...

7)Seeing what I've accomplished. This lets me know I can go further.

8)Laying back with headphones and my music list on a Sunday afternoon

9) Thelonious Monk's After Midnight. Always. I'm so glad I quit pronouncing it "Felonious Monk", by the way, but that works if I'm trying to spell check it... I type F first, and if it isn't redlined, I then delete and type the TH. I always do manage to do something the difficult way.

10) Snoopy. That little beagle always puts a smile on my face!

November Projects, Two Down and Time To Get Busy

November Project 1 was too short, and full of frustration with ribbon, shiny baubles and Gorilla Super Glue. I enjoyed it immensely!

Not only did I take photos in progress, but I have replaced my last long-lost Advent wreath and can quit screwing around with Hallmark's glitter-filled paper offerings that fall apart and don't have that pizzazz you're looking for.

Also, I am in this crafty mood, and even took it out on my manicure, doing a lavender French manicure in honor of Epilepsy awareness month.

Onto the wreath:

I posted this as a how-to on Instructables, but started from a Microsoft Word file.



You will need:
1)Plain wreath, available at dollar stores
2)4 candles, 3 purple, one pink. Advent candles can be found easily at Yankee Candle and many craft stores
3)Ribbon of your choice. White, gold, green, red,
4)Decorations for accent
5)Candle ring for candles (at craft stores, these come with a plain wreath inside, you can also buy separately.)
There is also green florists' tape, useful for sticking down almost anything!


You should have free- reign here. Pretty ribbons, silk flowers, baubles, pine cones, seed pods, almost anything, adding in color.
(I went simple as my candle ring is rather fancy and I wanted everything to work seamlessly.)

I threaded a wide white and gold wire-edged ribbon through and tied in in a bow. Then I added little purple bows around the edges, keeping it simple. This is a project that each person has free reign to make their own. The basic rule is to keep it simple until just around Christmas time.

Advent is celebrating the 4 weeks awaiting the birth of Jesus, so there is an element of waiting, and penance. So it should be somewhat simple... although you're not waiting with a handkerchief and mourning... it's reflection, taking time to right wrongs, and waiting... and every week, there's more excitement!

The candles:
There are 4 advent candles, 3 purple, one pink (If you can't find these, white candles will work with pink and purple bows.)

On each Sunday in Advent, you light a candle, which can then be lit throughout the week. As each week goes by, you might have 2,3, or even all 4 candles lit. (WARNING! As much as I enjoy celebrating my holidays with flare... if you set your Advent wreath on fire, you're gonna have a bad time. Please be careful of candles, and flames and take care around children and pets!)

This year, Advent begins December 2nd. This is the first purple candle.
The next week, you light the second purple candle.
The third week is the pink candle, this is Rose Sunday.
The fourth is the last purple candle.
The candles have a name, a value attached... Hope, Peace, Joy, and Love.

Have a joyous season!

15" Wreath form, threading wide white and gold ribbon throughout

Then I tied little purple bows around the outside edges





Here is the finished product, with a candle ring I bought at Yankee Candle I've since discovered that I could possibly have done most of the decorating with green sticky tape. I went simple as the ring is fancy, and I didn't want things clashing with the gilt holly.

I am considering re-working the big bow. 

With big bow reconsidered, after all, the idea is simplicity.

L'Esprit D'Boudoir

Sarcasm saves. Without it, I'd have been a worse mess a long time ago. But it's a double-edged sword, like anything else.

The French have a nickname for a prickly situation---when you pass someone on the stairs and you come up with a smartassed remark when it's far too late to do anything about it. They call it, Le esprit d' escalier - the spirit of the staircase.

I have a somewhat similar situation, and a new entry for the Bethglish to English Dictionary.

L'esprit d'boudoir
That moment where, when you are sleepy, warm, happy and safe, and dozing off, to be rudely snapped awake by any of, but not limited to, the following factors:

• Oh, my God, what did I say? Oh...God...
• They say at the Acropolis where the Parthenon iiiiiiiiiiis...
• Rabbits have two uterine horns, capable of giving birth to separate litters of kits days apart
• Boudoirs aren't bedrooms, actually, as any Downton Abbey watcher will tell you. It's a private sitting room before the master bedroom.(Yes, that has cropped up.)
• A sarcastic remark lost on a lot of people... (the Holy Wild Geese tale explains this)... after once again teaching someone to read a map... "So, have a goose, a goat and some ghostly knights shown up, yet?"
• Notes for doctors. All of which I take pains to edit after a bad night. ...and so much more. I'm working on teaching myself to relax and focus while the rest is in turmoil... I figure I'll handle that better if I can. 
  
   It's a busy mind, but I'm trying to work on that whole focusing thing. So far, still using fake stars and a rosary bracelet, and a free app called Insight Timer... I'm hoping I get  there. I focus, I do the decade on the beads. I know this---I'm sure as hell not giving up. I've rebuilt so many times, laying down and accepting is just not in me. And now... to settle. 

Humanity: Thy Name is Frustration

I can't lie... I am sad... because try as I might... this won't come out right.

YES. I SCREWED UP. I didn't say the right thing at the time. What was the right thing? I'm not sure... I don't know... I do know... when I wrote this... I had many faces in my mind at the time.

• No one is better or worse, more or less important. Every single person who is or  has been in my life... is a person. First, foremost and above all. They are not what they can do. That's what tears me when I get things that are misunderstood--- things that I was not pointing at a person--- taken to heart and then blown up... 
• I cannot go back and unmake mistakes. I can ensure I don't make them again. Period. I realize nothing I can say will actually come out quite right. 
• But I am grateful. I remember the good. At this point, like many... I am searching for answers and sometimes, I am going to say things that can offend... because I am attempting to look at all of this with humor, and some of it is inappropriate, to say the least. 
• I am not apologizing automatically-- this is a goal I'm working on. It leads to some awkward times if I feel I need to... because I'm trying to avoid one word that tripped out so easily from early childhood, the only word that really did. 
• There are things I'm trying to leave behind me, because I want to go towards the next set of goals, big and small, and I shudder at some things still. Yes, maybe I avoid things. That's for me, my priest, whatever. 
• I think two very separate sets of arguments went on. It's unfortunate, because it's left me sad and frustrated that I couldn't sort through it. 
• But I meant what I said. Here's where anyone stands with me. If you've been there, goddamn right, I am fucking grateful. And whatever the reason, yeah, it fucking hurts to keep butting heads. What did I look for? I don't know. I guess I was trying to put whatever darkness I felt behind me. I wasn't going for inflicting more pain. 

Qysemia and Forays Into Spam, Eggs,Sausage and Spam

Sometimes, you find yourself tempted to perform an action known as face-keyboard. This is where you forget everything and allow your head to come into sudden violent contact with your laptop keyboard.

In June---or was it July--- I wrote up on one of my searches for alternative meds... the anti seizure drugs all have their quirks and I have been on, or so it seems, each drug in the spectrum (although, I may be missing one or two, and am not tempted to start up a challenge.)
July brought with it a repeat of Lamictal... I warned the PA... "I have issues with Lamictal. It's not pretty." "We think you need something else besides the Topomax, you're allergic to..." and the list was rattled off.
Sigh, I said. In due course I proved this was an allergy they missed, although they tried telling me it had zero side effects. I bit my tongue in two before I offered them one.

Because Topomax has a nifty little effect, namely, in 15% of patients, it causes appetite reduction (it also causes corn-syrup soda to acquire an odd flat taste in 16%.), I'm watched care--ha! No, they keep upping it. I keep trying to be weaned off. And, if you look in stores now, you too could be one of the 15%! Because: The diet drug, Qysemia, is Topomax sold OTC!

So, I started looking around... I picked up something to mix into milk to up calories I miss as a result of Topomax, and asked about horny goat weed. Among other things, I've never actually dealt with PMS... I was so messed up I don't really remember a pre-anything, and spammers? It's not wise to call the kettle PMS-y, eh?
Since the conversation amused me and pulled me out a funk, I had a laugh about it and wrote it up. While the spam ad re: a massage is great, the lube named for cheap drugstore make up that is waxy, chips, or otherwise feels awful, is not going to inspire my confidence. But I so enjoyed my spam emails. Bloody hell. (Punning not intended.) Spam is spam because people or bots hope to sell everything from penis extenders to bad lubricants, to robbing from accounts. Next time, I'll simply empty my spam folder, but I enjoyed my laugh.

Ps. Peppermint oil in water CAN help with mild headaches---I drink it like I drink the Bach Rescue Remedy drops in a glass of water. Sage helps with calm... I put a little in water and use it as a spray. Melatonin helps at night, this I use with input from my GP. Spirutein works well in a glass of milk. I like the chocolate, but you really have to shake it well, or measure and shake, because despite what the can says, it clumps most disconcertingly.

Live Long and Prosper

Sometimes, you get that feeling that, being one of millions aside, having been silent for so long, having heard so many questions, seen so many crackpots, undergone tests upon tests... that sometimes, you just... don't quite fit.

I said sometimes, I wistfully wish to be normal, forgetting a lot. I mean, God... I enjoy a lot, and I learn many interesting, useful things, find new tools to work with, find many things that help myself and others, and enjoy laughing at so much, even that which, some may say, shouldn't be laughed at. (I have a certain response for that.)

A few weeks ago, I put forth a theory that I may just be an alien, that somehow, my parents brought home a baby extra-terrestrial. It explained never feeling quite "there" in loud places when everyone else seemed fine, always feeling like escaping at family functions "Uh, I think we're out of soda..." needing to recharge longer when it was loud... sometimes it seemed that conversations were screamed around me... and sometimes, if people got too close, it took days to recuperate. (I realize now, that while I like people, I simply get my energy from myself. I'm working on outlets.)

I was joking, after fixing an issue caused by my light-colored eyes (it was something that bothered only me, I'm a wee bit picky.)  and a camera flash, and playing with an "alien" filter (the anime was too freaky... too much bugged out artificial eye, too much blush, too much everything... shudder.) that my theory on being an alien, though was not quite off the mark. And it explains affinity with stars and my love for sci-fi.

I tried to do this in purple, in honor of the month, but it just didn't work.

Live long and prosper. :-p

So Much Silence, So Much Shouting

In the interests of both not being silent- a group interested in lighting up the White House purple in November like the Breast Cancer associations get it lit up pink in October was talking yesterday about a question they received: "How does epilepsy kill?" The first way is silence... I'm trying to put it all together.

I started having migraines at 8. Since I tended to squint as well, they thought glasses might help. At this date, one photograph exists of me wearing glasses. At 14, I started having some strange spells, EEGs were begun, nothing really heard from....we're still battling. I know that glues have changed in the years since.
I still squint after a particularly bad episode or migraine... or I tend to use one eye and shut the other.

Among other things I try to have a sense of humor about it. In June, I had a 2 day EEG that was not only the umpteenth test (I have lost count) but went badly and gave only artifacts--- which were somewhat useful but unfortunately, the 14lb monster machine (built while I was in high school, according to the manufacturer's label) went dead before the end. I was wired up one day, and using the useful tips I acquired,
1)Invest in zip-up or button up shirts. These may need to be low-cut, as leads will be attached to chest. I bought a few zip up summer-weight yoga shirts.
2)Understand bathing will be from neck down for two days, in summer heat conditions. Invest in the "Certain Dri" deodorant you put on at night that keeps you dry through anything and is activated in sleep. Even the troubled sleep of attempting to find sleep while spooning the portable EEG machine and laying on wires, glue and gauze.
3)A large cap will do you well if you need to go forage for food, on the way to the doctor, or to cover up the messy, gluey hair you are left with afterwards.

These are the longer ones...the shorter ones, in office, are lovely, and I can sleep through them, provided they're not flashing a strobe at me, or asking me to hyperventilate.

I went to see a beautician who has a daughter with similar issues...she was kind and non-judgmental, and got me human-looking again.

I texted one photo, the night before the wraps and wires came off, with the caption, "I'm a mummy.." as I was working on keeping my sense of humor...as weird as it was.

This one was the day of, on the way out. I wore the same cap, purposefully too large, to acquire dinner. To the odd looks I got, with the gauze and tape and some wires visible, (apparently, the gauze and tape were what was caught... ) I simply said, "You should see the other guy."
Yes, I did have some bruising. I can't remember why. The Polaroid app makes it look even yellower.

And, no, unlike my joke, I really didn't put mascara on that day. My apologies... it's not Maybelline, but I do tend to emphasize them on non-test days. (VANITY!) But I'd sacrifice the dark lashes for my father's blond brows. The cap and shirt have not been touched since.  This is why I'm subtly going purple for November... and why I am lending my voice.

Singing In Riddles

I've found myself wistfully, dreamily saying, "I wish I were normal..." I realize, this is not what I should be thinking, let alone feeling wistful about. Sure, things get tough... is it fun to know that any given moment, I could lose track of myself in public? (I have to get past my fear of that... here is why I need to learn to trust those I keep close... those very few, that quirky, marvelous little group.)
Sure, I might be getting myself into a nice boiling little pot trying to sort that out here. I've never learned to hold back before, I doubt I will soon.

Is it fun... knowing that I sometimes pack my schedules so deeply I can't settle when I need to settle... until my body disconnects itself? I still use certain phrases, I still use dis-associative  language. It's not "My brain" it's "the brain," "acts as CPU" "Operates sort of like an electrical line that gets overloaded"... sometimes... the circuits just... overload.

The thing is... I can be told a million times, while I sigh dreamily... "Sweetie, there is no normal." and really, there isn't. I know this... and I think I'm wistfully looking out and seeing ease that doesn't exist.

I'm still sorting. Getting past, "This is impolite, this is something to delicately sweep under the pretty Oriental rug. Where it will sit and fester and we will politely ignore it. Or we'll ask the questions that make you pale and bite your lip in consternation. 'Why you'? (I have no answer but the technical. It happens. Something went wrong in the wiring. Obviously, upping meds that don't work isn't going to help. Nor is guilt-tripping when I show I'm having an obvious reaction.)"

Was I asking, why I couldn't somehow be comfortable anywhere, be loud and brassy, brusque, anything but the terrified shell of myself I can become? Anything but the difficult child? Why I couldn't... I have no idea. Be what my mother wanted--wants--- even while being quiet and good and sweet and...ugh... are smiled upon... (ugh here is a fill in. You pick the phrase, I'm kind of avoiding it.)

But this should help me. And I will attempt to remember it even when I'm looking out and going "How are you able to just... be?"
"Trying to conform is like kissing ass to a moving butt."

Modernity and Zen

The modern world leaves you way too many chances to overbook and over-extend. I find myself doing multiple things at once at a constant basis... right now, I'm attempting... perhaps unsuccessfully, but I'm attempting... to do the sweats-and "chill" thing. (Apparently, you sort of slouch and just let the body take over... I never quite got this, and will need to move.) The other day, considering everything, I found myself packing appointments so that, in the time for lunch, I was literally capable of a mouthful of food and to quickly swig my cup of coffee. (Do NOT, I repeat, NOT do this. Serious face.) And then requisite papers that I did have in my possession were not the proper ones, yada yada... and Tuesday, I face the business end of a syringe and a round of tests again. This time I left myself room to eat, grab something for the post-bloodtest shakes, and to grab the materials for my first November Project, for which I will be posting photos and How-Tos once I get it done. (I am terribly excited and want to get my hands into it.) I also can't wait to bake, make up some tortilla soup, smell the spiced broth, peppers, garlic, chicken, spices... the fried tortilla.

And now, one of the few things that lets me sit... MUSIC.

I stumbled onto If I Were John Cusack by Dr. Pants via The Bloggess, aka Jenny Lawson,  who is absolutely hilarious. She is of the giant-tin-rooster-named Beyonce for her husband's anniversary gift-fame, and has recently published her own book, Let's Pretend This Never Happened: A MOSTLY True Memoir.
Dr. Pants was kind enough to be sensitive to Jenny's needs---she has written regarding her social anxiety...and played a concert... in her bathroom. Here they are in their absolutely adorable glory. This video was not recorded in a bathroom, obviously.
Thank you to the Bloggess, it's become a favorite in a very short time!

Miniature Book Club Recommendations

Some friends can act a bit like a miniature book club, which is great when I'm laid low and need to rest. My personal recommendations are as follows:

The Diving Bell and the Butterfly-Jean Dominique Bauby - a tiny little volume that easily hides among the bigger autobiographies at the bookstore, its bright yellow cover serving to quietly assert itself among larger black and hunter green volumes. Written by a man who, as a result of a stroke, awoke from a coma able only to move his head, brilliant mind locked silently into his body. Due to drainage issues his right eye was sewn shut---this irritates him later when the tapes loosen. Through painstaking process, an assistant read off the French alphabet, arranged so the letters used with the most regularity were read off first. When Bauby heard the letter he wanted, he'd blink, eventually forming words, sentences, paragraphs. Stark beauty, tales of smelling food he couldn't eat, recipes, dreams of dancing letters... all in barely 120 pages.

Dear Communion of Saints- The Ironic Catholic
A take on the basic Dear Abby format, with beautiful sarcasm. Those looking for serious theological reading will be very irritated... but those who are not will giggle at Job consoling someone about their wisdom teeth, Thomas Aquinas and Catherine of Siena discussing carob, and St. Rita discussing baseball. I think I committed one of the seven deadlies  ( I was frustrated, I'm not entirely sure I got wrathful, and no electronics suffered in the process.) attempting to transfer to Kindle app for Android, for which I am feeling terrible. It finally worked, and I love it. I got it free using an All-Saint's Day coupon code, however, it is available for $1.99 on Smashwords and in a variety of formats. I love it already and will be thrilled having it with me for those long waits.

The Game of Thrones series--- I always say the book is better. If you must have material until Easter, and you enjoy, among other things, knights, swords, medieval-style politics, then invest in a box set!

I've currently been my mother's bloodhound for out of print books. I'm not sure if I'll necessarily be answering anyone's "What do you want for Christmas?" with "A book"... I find their eyes tend to mist over... but if you insist... I'm fine. I'm good. I never know what to ask for.  But if you find anything interesting, let me know. And no, I have not touched 50 Shades of Grey, but found Ellen DeGenres' reading of it hilarious.

Purple Pumpkin Pimpage---WHY?

On October 15th, I wrote up the Purple Pumpkin Project. At the time, I figured I'd look for support for me... I was in a little of a low place at the time and hunting up whatever links and info I could find. In that time, I have been graced to find more information than I knew existed, to begin compiling lists of societies... to learn of various treatments, of varying efforts to show faith, for closure, for awareness, for something I thought only existed in shadows... because at one time, my family whispered about it... it was a shameful reality. I had "a problem". How do you solve a problem like Beth? There were meetings, various treatments discussed but too expensive, insurance saying "Are you kidding?" There was a time I thought it was all over... and the shame of having to say "It came back." Oh, that was a frightening moment. That was a hellish week of trying to decide.

Why should I be frightened?

Epilepsy is not a curse. It should not be a death sentence, nor a personality flaw. It is not demons attacking, I do not need an exorcist.

I am finding, in my own way, support... by learning to speak, by learning to give. When you give, you are given. Seek not to be understood, but to understand, and I am getting that... seek not to be consoled, but to console...and that, I am getting too .

I fight, I talk, because so many can't yet. I am not ashamed, because I do not have reason to be.

I have to be the change, the light, I want to see... as the song goes... yes, yes, it does begin with me.