I blog gluten-free

Sunday, October 28, 2012



That said, it looks as though the Eastern seaboard is being hit by Hurricane Sandy. While it isn't time to go and stock up on 100 lbs of dry rice, 50lbs of dry milk (eww, really?) and cases upon cases of bottled water, dried vegetables and fruits (I would however suggest Bare Fruit's bake-dried Fiji apple chips in any type of weather.) I would say:

  • Charge your phones
  • Have money around in case of emergency
  • Stock up on flashlights, extra batteries
  • Please know, it's supposed to blow over by Thursday.
  • Stock up on any emergency medications- while this is not a zombie invasion, is not weeks upon weeks surviving on dried beans and canned vegetables, it's a safe idea to prep for the unexpected. Make sure your usual medications are well-stocked.
  • Those with electric appliances and electric-only hookups may find themselves at loss. While I have 24 hour access to a few fast food places (I grabbed a coffee at McDonald's---not my usual (I'm picky about coffee now)... during a particularly long power outage and needing light and warmth in the freeze... after one of the main lines got struck. This tends to happen.) and can have access to limited food sources there (hot drinks, soda, fruit salad, milk.) in walking distance, some do not. 
  • Basic canned foods that can be eaten cold work well... fruits, some soups (if your gag reflex is good), tuna if desperate, or those that can be heated with a little snap. 
  • Stock up on your bread, butter, peanut butter, jelly, eggs, milk, coffee, fruit, veggies. Find leftovers you can eat cold if you are in an outage and you have electric stoves/ microwaves

Remember that this is brief... it's a storm that will gust and pour, and pass over. Remember not to isolate yourself and try to keep in touch with family and loved ones. I know if I go silent, I will have people banging on my door. For this reason, I am working on ensuring I send up a flag: "I am fine. I am ok. The only horrid thing is paperwork, and this too shall pass"... and ensuring that I access emergency help if I need it. 

Be safe, but don't let yourself panic. It hurts more, leads to more danger. 

Friday, October 26, 2012

Boogie Shoes and Happy Dances

A "happy dance" is one of those special things. No one need stand in judgment, and no one said you have to do it well. That said... boy, do I need to work on my disco!

Thursday, October 25, 2012

Holy Wild Geese

Once upon a time, there was a very brave and very smart knight named Count Emico of the Rheineland. In his day, the Crusades were a big thing, and Emico, tired of simply breaking into priests' houses and killing off refugees, and being greedy, decided he wanted a piece of the action. Off he went with his brave knights, on their way to the Holy Land, to accomplish the task of "ridding the Holy Land of the Jews". (Emico was charming like that.) Well, off he and his men trotted, good Christian knights all. And like all good Christian knights, they were soon visited upon with a miracle. It was no less than a goose filled with the Holy Spirit. Off they trotted after wise Mother Goose, who probably wondered, "What are these idiots in clanking chain mail doing?" in her little goosey brain. She was a smart goose, honk, honk, and she managed to lead our sage heroes to Hungary.
(Now, if Emico leaves the Rheineland at 12:45AM on the 3rd, and heads southeast, and train B leaves Minnetonka... he eventually reaches the holy land... provided he isn't following Mother Goose.) Having gotten sidetracked and led to the north instead, Emico did the smart and logical thing one does when one has embarked on a literal wild goose chase. They had a nice goose dinner. Then they consulted a map... oh... erm... another knight brought him a little she goat that had been filled with the Holy Spirit. So they followed her. Again hopelessly lost, they ate her. 
Sometime later, rather boringly, our heroes, apparently not having absorbed the Holy Spirit with their nutrients, finally reached home. Having never reached the Holy Land. 
And they all lived happily ever after.

Ps. It's the only sane knight that I'm sure was included in the bunch, that has me thinking of a knight actually consulting a map... "Hey, um, I have a map right he--- uh, you ate the goose and the goat... uh, you know what? Map? I didn't say 'map'. Lead on."

Wednesday, October 24, 2012


Bad day?
I almost let myself have a case of the "Brats" today... (In Bethglish, we're talking a "pity party", not a huge box of bratwurst, which I have not had the pleasure of collecting. Darn it.)
But then I remembered... wait a minute... things are looking up. Quit that. The fact that I'm exhausted by--- life being life? The rain? Politics? Oh, pesky, pesky politics... that's enough to knock anyone for a loop.
And besides... there's so many things that kept me smiling...

1)St. Kitsch -for every one of us who ever kept staring back at the Sacred Heart, because you were certain the eyes moved as you did, like those cookoo clock cat things, and besides, showing off your own extremely detailed heart just looks painful. And yeah... there really is no excuse for Barbie Communion Dolls, and some saint's cards will make you go, huh?

2)I did have the special pleasure of getting my hands on a favorite comfort food, Ruby Tuesday's cheddar mashed potatoes. Ok, maybe I am spoiled. Since I can't have bread, I get extra... and they're always kind enough to give me an embarrassment of riches. And to think, it was the beginning of the week and a spur of the moment kind of thing, too. Granted, I do wish I had more to choose from at restaurants. It's still fun to play this game though...there's always a diner, usually, a mother, who needs to know what you're ordering. "I'm not telling you, I'm telling the waitress."

3)Duck diapers. Why? There's something funny to me about ducks, anyway. Add in a duck in a diaper, and it's a small giggle. A duck in a diaper needing a harness? Is something... yeah. I think it stems from an incident at 13 that went like this: "See the beady eyes?"---Aaaaaaaaaaaaaaaaaah! All I know is, I sure as heck wasn't going to put that feathered tuchus in a diaper. And I still like them. I just think I met one with an attitude.
This goes beyond "something" and becomes "I think the  nice man in the white coat wants to talk about your Daffy fetish."

So, quit looking at the rain and the sogginess, the fact that for two weeks, people are going to be scrambling at each other, while the late fall days leave so much beauty unthought of and untouched, even soggy, the bills will soon be due... 

Time to live and smile!

Tuesday, October 23, 2012


We've lost all ability to speak like humans, it seems. The candidates are debating. The two major parties are there to show us what their candidates are made of, encourage that last minute, still-hanging on swing vote...
or, they're there to encourage grown ups to go at eachother's throats, insist that theirs is the path, and theirs is the savior, that the candidates are shills. Frankly, election time is one of the rare treats that shows the worst in people.

I could encapsulate it, to an extent, but even that is somewhat of a dirty, nasty, trick. Whatever I choose, is my choice, and I'll put that in myself.

But in the mean time, for the next two weeks, it'll be about voodoo dolls, GMOs, padded toilet seats, taxes, lowering and hiking, rewarding banks or not... all at the risk of others' sanity. Everyone's nerves are red and raw. I don't watch even highlights...when I am so disgusted by it all that that's all I can watch... without feeling exhausted and ready to snap.

Politics makes for strange bedfellows, is the most polite thing I can say. The least polite thing I can say reeks of vulgarity. I do know that there is a sort of "working holiday" coming up.. a chance to simply enjoy the sillier, maybe scarier stuff. I think I'll focus on that, work on heading in to the polls clear headed and not with steam in my ears.

Saturday, October 20, 2012

Tunnel Vision

If I take all of the advice handed out, I would be frankly, A)going against my own self-preservation B)be very contorted, as I would have managed to somehow do two opposite things at once.

I can't hide from anything in the past. It is what it is. (As much as that is a horrifying and meaningless statement.)
I have to move forward. Herein lies that particular bargain I made with myself. That if I need something done, then I am not going to simply wait, but get it done.

While, perhaps, I have no filter, I am capable of restraining myself to an extent. This is why I prefer to give myself some time to breathe. If I were absolutely not capable, some things I was thinking would have been said in full fury. Among other things, if you tell me I should read the Art of War and The Prince, and apply them to my life (I do hope that the person giving that advice realizes Machiavelli was being sarcastic.), I would hope that you do not do the exact opposite.
I stopped myself before "Be a man," and "Seriously, dude, I'm buying you a binkie for Christmas." But... in this new deal... where, if I know, that it isn't right, it is being worked upon and improved, that isn't sitting, but is, instead, changing for the better, or being dropped if it has to be, the advice to be tougher is good, to an extent. It's also a double-edged sword if you choose to use my "sensitivity", health, etc. as your weapons. I also choose not to become bitter or hard. I won't take the crap life has to offer and say "That is all there is." I will climb the shit mountain.

There are things I am not humanly capable of handling. There are some things that arise by virtue of humanity: anger, worry, fear, whatever. (Do I dare make a long list?)

And no, I won't hold back here: If you are a 39 year old man, you should not be hiding behind your mommy's skirts. If you cannot say "Here is my issue" to the person you have a problem with, while it is small, and actually work on it, while it is small, which I hoped to do... I am trying to kill off the small problems before they are big problems... there is a problem. Talking big and being aggressive won't do you justice when you have that problem. It's a kitten trying to roar.
I'm not necessarily infuriated with anyone--- I'm just saddened that exists! That helps no one. That's no way to live. Do you really want to spend your life as a living embodiment of Freud's specious, and really, rather silly philosophies?

One of Those Days?

Those days... the ones where you're pulled, here, there and everywhere.
Where you slump and get healing sleep, alright, but at what cost?
There is what we are made of, and there is where we come from, and all the ties and pushes, and shoves. When you've got just enough to starve on, and you're at wit's end. When you're being too hard on yourself? Oh, today--- I was at wit's end--- and found out a friend was dealing with the last two... I do the very last quite often, we talk enough that we've gotten to talking ourselves out of that. Or not. For everything to go, all at once, and everything to be a "No". I'm there, friend. The darkened house, the fighting with utilities, the many yards of red tape... I've been in those well-worn shoes. I'm glad someone is helping keep the phones charged, I'm there when needed. I'll celebrate over coffee with you when all is back... because you will get this done! It is tough, it is scary. Doors slammed in your face, "No's"... but you're halfway there, already!

With this song, I say this: just lay back for a bit.

Rag Doll Girl

*Please note: I have no ulterior motive here... and in reading this, there is nothing laid at any door.--- At this point, however, in lieu of answers in my situation, I am tired, I am running empty, and feeling it, showing it... because, if I have none, I can give none. 

I'm not a rag doll, please, quit pulling--- if I come apart at the seams, all the safety pins in the world won't hold me together, and it won't be teddy bear stuffing showing.

To toughen me up... it's a double-edged sword, isn't it? Chances are, eventually I'd break... that I'd finally say something.

I could, it's so easy...answer darkness with darkness, let my hopes, my flame go out. I have fight, I have hope yet. I don't run with guilt at my footsteps.
"Spit in one hand, hope in the other, which gets fuller first?" I have tangibility, though... I know my constants. I know getting hard, letting hope die, not fighting, even if misunderstood, even if, try if I may, I can't quite make myself understood...
I love. I am loved. I build. I have some new surprises on the way! I laugh, I find new things, daily, that remind me... "It isn't that bad--- you're ok, forgive yourself, too... it's still beautiful here, if you look..."

I had a running clipshow nightmare... yes, I remember those places... I know them by name... I am not there, I am free. No, no faces--- no voices--- but being sick somehow caused the running "Help me! Is this it? I'm trapped!" part of the clip show. Ah, Little Brain, I think sometimes I should treat you like a terror prone cat. There, there. Pat, pat.

I am alive, I am free, I am human. I can laugh, I do, I get better. One day... I'll be... hmm... I say, sometimes, as wistfully as Dorothy Gale says "There's no place like home," in The Wizard of Oz, "I want to be normal"--- no, that's not it... I want to be.. that me... the only me I'll ever be, or so it goes, (I gotta be me...) that can be silly as she pleases, can simply enjoy the loud and be alone, or with a friend in the quiet, not ashamed to need the softer silence to recharge, that forgives herself, as easy as others do, that knows, if it is stormy, the storm will pass. I cannot give anger for anger. I am trying to learn not to apologize so much. I will forgive myself for having a bad day here and again. I will fight for me. I'll put on Bob Marley for now, after the song I have on now, and, soon, yes, my boogie shoes.

Thursday, October 18, 2012

The Purple Pumpkin Project, Part II

A few days ago, I posted about the Purple Pumpkin Project, a Halloween project that supports epilepsy awareness. Since I have been talking it up... and because awareness is so important, I put myself to work. Here is my teeny tiny little pumpkin, wearing its Epilepsy Awareness ribbon. = )

Again, the Facebook page for The Purple Pumpkin Project can be reached at: The Purple Pumpkin Project

Here is my tiny, misshapen, but (I think) absolutely marvelous little pumpkin, in my "garden".

If you need help, if you have questions, please contact the American Epilepsy Society
the Epilepsy Society of America
In the UK, please contact Epilepsy Action UK
In Canada, please contact: Epilepsy Canada

They are ready to help, and not just on holidays. As am I.

Tuesday, October 16, 2012

Dalek Cake!

Where there's a will, there's a way to do this minus the Twinkies... mainly because I want to play with these a bit. I also think the Christmas M&Ms and a candy scarf would lend these a seasonal touch. Since I have some Christmas episodes of Dr. Who (from the original series, Pre-1oth Doctor, as well) DVRed, it's perfect.

Update 10/17/12, 4:37 PM Gluten Free Chocolate Fiends, Rejoice! A GF Swiss Roll has been found. If your store hasn't got them (I'm going to have to do a quick check, myself.), there is a place to order them.
I'm considering going from scratch myself, but for something fast, this is just fun, and you don't have to be fancy.

Gluten Free Chocolate Swiss Rolls

Danse Macabre

Late at night, under a waxing moon, the eerie fiddler wildly saws away at his fiddle, and ghosts and skeletons merrily sway in a fantastic, macabre,  dance.

Absolutely perfect, as the wind grows chilly, and the leaves begin to change, and dance around your feet... 
the not so-calming, but oh, so appropriate, Camille Saint-Saëns's Danse Macabre

Monday, October 15, 2012

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?"
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 Creative Commons License
This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 2.0 Generic License.

Sunday, October 14, 2012

I'm Not There Yet, But I'm Gonna Boogie, Anyway

Building 429 is one of the bands I headed down on the field for last month in the rain...

No, not there yet, and so much more to do. But in the meantime, no time for funks... the rain may fall, there may be a chill, but I can't let myself fall into pits of despond. (It's one of the traps our Pilgrim falls into in John Bunyan's Pilgrim's Progress) But on the way, I'm gonna boogie.

Saturday, October 13, 2012

The Red Corset and the Baron

If something is wrong, it's being fixed--- whatever it is. If it's something that just feels odd, if I just have a heavy feeling in my gut, if it makes me feel sick... it's being investigated and changed until it's fixed. I'm not going to let it sit if I feel like it's getting too loud and crazy. I'll start compiling a network, and if it can't be fixed right now, all at once, then it gets worked on until it can be fixed. For example, malabsorption--- if things are being blocked from being able to be used by my body, then obviously, the culprit has to be found out. If whatever is not working, it must go.
So far, there's counselors, priests, friends, family. I've sat them down, I've worked to get them and myself educated so that if I am sick in front of them, they know and I know how to work things out. Because at one point, with the epilepsy, there was a little shame with the family, and that's never good... that helps no one, and that is freaky for the patient. After May's incident, in the car, after which, I found a nice bruise across my sternum from the seatbelt... (I realize, had I not been buckled in, going forward as I did, I would have fallen headfirst into the dashboard, so that's probably a good thing.)--- the shame really is no more---it's become, "What can we do?"

 I work every day on trying to toughen up, as eventually, I have to say it, "No, Dr., you aren't helping me, you're hurting me."
More work to do, but hey... Progress! :) And... vision's clearing up again... I was getting some rather wonky vision in one eye after the last round. (I'm used to being a bit weirdly-sighted, farsighted in one eye, very myopic in the other.) Now, let's hope this round of tests--- ugh, really--- points to something, I already have to change neuros, I don't want to go through the whole shebang, and this stress is getting to me.
---points to SOMETHING--- but among other things---and the list is being made as I need to memorize it and might as well ram it home: "Need visual and spatial tests. Check kidney. TRUST ME. It's THAT time of year again."

No excuses. These are medical staff who need to understand that I, a patient, need help. If they care at all, I will get help. They will understand that Shouty Doctor is absolutely inappropriate and that a patient in fear is not conductive to said patient. I cannot run from that. They are there to help patients, and took a vow to do so. I am not asking for the moon, stars, and Valium  I am asking for medications that do work, and to be able to eat like a normal human being, as being one of the 15% who experiences appetite loss on Topomax is not conductive to health, nor do I feel physically healthy now, especially having had the dose upped...after I said, "No, I can't eat normally on it." A well-behaved patient can be a dead patient.

I have things to do, and can't be wasting time wishing I could eat normally, or being a little sad that everyone is running circles 'round me. Nope. Time to dust off the boots and head into the woods, down to the creek... off where ever my heart desires.
Or perhaps the The Mütter Museum to see the Soap Lady.


Ten Years Ago:

Favorite breakfast cereal: 
Grapenuts, hot.

Favorite band:
The Smashing Pumpkins, perhaps a leftover of the teenage crush on Billy Corrigan.

I was:

How many tattoos did you have?
One, I describe my process here: http://bethydoll83.blogspot.com/2012/09/not-just-doll.html I had good intentions, but really? I thought like an 18 year old, because I was an 18 year old when it was done.

How many piercings did you have?
One in each lobe

What was your worst fear? 
I never really thought of them much at the time.Failure, probably.

Ok, now, at 29

My favorite cereal is now GF Rice Krispies, I still love the Pumpkins, but only the original 5 albums, sort of like I only like Metallica pre haircut,. Only one tat, added in a cartilage piercing at 20---21? so it's 3 now. Failure, those things that terrorize in the dark and need the shadows to hide out in? Liars. Not facing my fear. So of course, it's probably best that I face it.

I, Awkward Robot

Human beings use numerous codes to speak to each other... because--- well, being blunt can be a bad thing on occasion. (I'll still forever lose my capability to censor, but pray like hell it comes out as intended.)

-What are you thinking? can be answered many ways, some depending on gender. I know one male friend who had to honestly tell me he was surprised at how one backside fit into tight latex pants. To be fair, so was I.

On the whole, it depends for me--- "My God, how is that shade of day-glo purple possible?" "Should I toss caution to the wind and dye mine pink?" (I decided on "no" for me, but I still am fascinated by the purple.) However, I am thinking silver and gold foils for the holidays, something new and fun, a little extra surprise. Because I intend to play.

Mostly though.... it's "Holy hell! It's loud! Too loud! Coffee! Too much!" I can have all the grace of a malfunctioning robot when everything is too loud. It's part of having a personality that internalizes rather that uses the outside to recharge itself.
So, if you ask me what I'm thinking or what's wrong, it's probably that, and the "nothing" is likely my last-ditch effort towards avoiding my awkward robot.

Buy it, use it, break it, fix it,
Trash it, change it, mail - upgrade it,
Charge it, point it, zoom it, press it,
Snap it, work it, quick - erase it,
Write it, cut it, paste it, save it,
Load it, check it, quick - rewrite it,
Plug it, play it, burn it, rip it,
Drag and drop it, zip - unzip it,
Lock it, fill it, call it, find it,
View it, code it, jam - unlock it,
Surf it, scroll it, pause it, click it,
Cross it, crack it, switch - update it,
Name it, rate it, tune it, print it,
Scan it, send it, fax - rename it,
Touch it, bring it, Pay it, watch it,
Turn it, leave it, start - format it.


_Technologic, Daft Punk

(Reminds me of the series of orders given in a baby robot alien voice during PT... it was creepy then, and it is creepy now. And yet, here and there, I still know and remember the song, and the game, which taught me hand motions and speed.)

Friday, October 12, 2012

Jacket Test

Note: I am not a paid blogger. I bought my jacket the old fashioned way: putting down cold, hard cash at a sporting goods store.

It was time for an honest-to-goodness jacket that would keep me warm, as well as wear nicely for everything I need to be doing this fall and winter--- dodging cold rain and snow, sledding, hiking, walking, etc. I came across the Columbia Women's Whirlibird Interchange Jacket in black printed plaid--- more a dark bluish green watch check... (I like it, no complaints.)  it's warm, in the mid autumn chill- bonus. My last was a mere wool blend with the "satin" lining. This one has the lining that recycles your heat back to you. As I am accused of being a little heater, this works miracles. Bit of a puffy arm situation going... I feel like I'm carrying a sheep under each arm.  Not nearly as bad as Maggie Simpson's snowsuit (she looks like a baby starfish)... or like the younger brother in the Christmas Story (Played 24 hours a day on TNT until you are officially all Christmassed out and ready to risk having your mouth cleared out with Life Buoy.) who can't put his arms down... but the first test being the sweater test was probably NOT a good idea.

Will need a hat, hood isn't insulated. Nice and long, Columbia products have stood the test of time with me before, so I trust them whole heartedly.

I give it a 8/10.

Thursday, October 11, 2012

Down By the Water

More tests coming up... already a bit bruised and battered by last round... and they forgot what they were talking about 19 seconds before shuffling me out the door. Well, guess it's lucky I'm heading back in 2 months for another scintillating round. Gotta pull myself together... and using the passive voice won't work for me here... I am going to get that done... I will pull myself together and get what I need. I WILL be my own advocate. For now, I have a good jacket, and will be drycleaning the Black Poppy woolie and putting that aside for dressier occasions... so that if I'm feeling up to it, I can hike off the irritation. Now's NOT the time for Murphy's Law... for everything to be brittle and funky and everything to suddenly be in the "Well, we found inflammation... it's inconclusive, but..." state. Getting twitchy. But... I'm also prepping the fun stuff... trying out sweets while making appointments for another 8 vials to be drawn out, watching the leaves, having coffee down by the water when I can. I know that no matter how bad it gets, I am OK.

Why, my soul, are you downcast?
    Why so disturbed within me?
Put your hope in God,
    for I will yet praise him,
    my Savior and my God._Psalm 6:11

Down by the creek, to drink coffee & watch the leaves change

In keeping with the theme, I had to be googling something on running down to the river, or something, because I was sent to a lyrics site to this song, which I couldn't resist and liked very much. All hail accidental eureekas. 


Hallowe'en is coming, and with that, a time to play with food. Since I like creepy--- (an Athena costume added in a realistic plastic spider to show Arachne, turned into a spider for daring to boast of her weaving exploits.) I thought I'd play with food. First, I came across this photo:

and thought--- oh, that better be red velvet. Since buttercream is stiff, all I have to do is pipe that out in zig-zags and voila! So, onto the test kitchen.
As for other things, still working on a sweet, fuzzy, Grover with hat treats. Pics and recipes to come.

The recipe I'll be tweaking is here: Spoonful Dot Com/ Brain Cupcakes

I can start with a gf yellow cake, add in a dash of cocoa powder and sugar to taste, and some red food coloring, (the lazy way). Let cool, then work in the dyed butter cream frosting, zig-zagged in.

Wednesday, October 10, 2012

The Diving Bell and the Butterfly

So much can happen in the blink of an eye...

The Diving Bell and the Butterfly, in fact, was written in the blink of an eye---not the fast way that so often describes, but in a slow process, 2 hours a day. The author, Jean-Domininque Bauby, had been laid low by a brain-stem stroke that left him in a coma for 20 days and his wide-awake mind, brimming with life, in a body that couldn't move. The French alphabet "ESA..." was read off to him until he blinked to let the reader know which letter he was looking for, making words, sentences. In his mind, the letters danced for him at night.

He describes talking with the Empress Eugenie, days at the beach, snapshots of life, his speech therapies, he is bitingly sarcastic at times.

The book is thin, its yellow and orange cover has to pop out from among larger, more sedate black and hunter green tomes... only 129 pages, translated from the original French. He died 2 days after the French publication in 1996.

Bauby is an enigma people either love--- for himself, for his wit, for that French charm and humor, or detest, mainly because he was a flawed human. I like him for being human.

While he can't eat anymore, except by tube, he does enjoy being wheeled to the beach to smell french fries. And that is something beautiful to me. He describes everything in stark snapshots, livened up here and there with his butterflies. He gets sad, he gets dark... and yet, he dreams, he smells food, and he prays.

Somewhere along the way, he learns how gossip floats about him. While he gets sad, angry, he doesn't get defeated. Even being called a vegetable doesn't irritate him for too long: "I'll show you I'm smarter than a turnip!"

It's stark, a petite little volume of huge impacts.
Love him or hate him, Bauby will make you think.

Cleaning the Slates

*I am intending that this be general, to an extent. I do have to make a retraction, but on the whole, I vent on a general level, and am not generally intending to hurt or malign any particular entity.

Among other things, I haven't got in me for anger or personal battles, which would sap the remaining energy out of me. Nor can I focus backwards... on everything that went wrong and what I'd do and say to fix it. I can say only this... here and there... I am introverted in some ways...medical tests, family drama, the world just being insane around me will make me need to withdraw temporarily. Nor do I have a will or drive to hurt another. The slate is being wiped clean...this is what I mean by going forward. I need to be somewhere else and to work on that. Someone else, close, was getting a barrage of shit... they got sick because of it;  I got some, accidentally vented all of it without bullet points, confused some, accidentally caught myself reaping a whirlwind. I have to take responsibility. For this I am sorry. I cannot call as the phone used to do so is pretty much a brick.

As for whatever emotional crap, I checked that out on purpose... wanting an answer. The physical was and is influencing the emotional, as it can and will. That's for me to work on and learning on doing so without withdrawing completely is a good idea.

I am working on getting answers and solutions, and keeping up my will and drive. Other things will have to wait.

As for creepy old men and the Sudden I'm In-Betweeners? No. Just no. Not happening.

When I say I want to go forward, I mean to do so without taking that all with me.

And when I said, originally, I wanted time, it was time to recharge, as I do. Not to plot a mean trick. Simply that. I never intended to shove, or fly off handles or hurt. I never intended for the general to be taken personally.

Tuesday, October 9, 2012

Give My Regards to Hippocrates

I am hoping to pull myself back and get to my cheery, cheeky self... I hate when I hit the Pit of Despond. Before that, basic notes, just in case.

"We like to keep a watch on our thinner patients taking Topomax as it's got a tendency to stall appetite"... Well, my goodness, you are doing a fan-freaking-tastic job!
 Yelling at a patient who is asymptomatic that day but still tender is a bad idea, as you may have noticed when I almost fell out of my chair... it wasn't just shock and surprise. Do you know what loud noises do with the varying types of headaches?!

You have complained that
(A) I am sensitive to many anti-seizure drugs. Have you ever thought that I might process any drug differently, as a result of having less than the full compliment of inter-body filtration systems?!
(B) My CAT scans are 5 years old. In this case, it's not a bad idea to redo them
(C)Correct me if I'm wrong, but medical equipment that is a decade+ old is outdated, right? And "Inconclusive" usually means "You might want to retry that."

While symptoms getting worse is not your fault, although having an answer and perhaps something to keep me in check, rather than having to deal with both pain and medication side effects (Ps... the lecture on Lamictal, which we've discovered I am allergic to... some of those arguments were used for another Bayer Pharmaceuticals product in 1900. You may have heard of it, it's called heroin.) would possibly be effective therapy. You have a duty to ensure I am in the least pain possible. That I am treated as a human being.

 Your patient should not have a fever, chills, shaking, anxiety and worsened episodes as a result, or be screamed at, as I was, for reporting such. I should not be frightened of you.

I understand wait times. It's why I'm always prepared. But 30 minutes past appointment time waiting to be called simply to give my insurance information, an hour and a half by myself, and five minutes of an appointment in your enlightened presence, oh Hippocrates, (I am not worthy! I am not worthy!) seems a little odd to me.

I am terrified to fill out information sheets. I am terrified to list anything!

I do not feel like I am getting an exam. While I am in pain, I feel as if I am being watched, I feel disgusted with myself by absorbing your attitude, I feel humiliated. When you take my pulse, when you ask me to squeeze your hands, I feel like I've touched something filthy.
I cannot continue with your fine and enlightened presence.
My regards.

Saturday, October 6, 2012

Space Oddity

There are the good days and the bad. I love focusing on the good... and if I have to, I really milk it: "I'm good enough, smart enough, cute enough... and gosh darn it, people like me!" Before I start doing Planes, Trains and Automobiles monologues, or a Sally Field Oscars speech...

Somedays, I must honestly say, are worse than others. Hey, it's a blog. What use if not an honest vent? I'm freakin' human... I'll get mad and frustrated here and there.
Ok. There.
Back to immature, bratty jokes on everything from whether blocking your left nostril (or so says science, honest!) can allow you to cheer yourself up, as you are naturally more... ebullient when you breathe from the right and you alternate nostrils multiple times daily... to waxing on the fun of how in 1712 in the Swedish Empire, thanks to gaffes with the new Gregorian calendar, and war, there was actually a February 30th... (I guess if anyone did as I do and puts some nastier stuff on hold against that day... like, say, kissing a squirrel, giving into illness-- NEVER SURRENDER!) they were royally screwed! and on why it's important to pay attention.

But there are days when I am just coming out of a shadow--- at this point, I am still a little funky and not quite me yet... like this past week, when rather than making progress, history got repeated... I drew a map, for the love of Pete!--how hard is it to do a freakin' scan! I can't freakin' live like this! Where for short moments, I may experience a sensation like I've forgotten how to understand speech--- it's a bit annoying, and how I know I'm truly stressed. I've shown what it's like this way, and if needed, it works as a party trick..

I have, in my list, both Italian and English versions of Space Oddity and My Girl- the latter being the sweet song I've known since I was a child and it was one of "My"songs, the former sounding even creepier. Now, if I am having fun with friends and a few drinks get passed, and Space Oddity en Italiano pops up on shuffle, an astute person might say, "Wait what?"
I like to start singing along in English and going, "I have no idea what you're talking about..."

But David Bowie is creepier in Italian.

Friday, October 5, 2012

How Do You Judge?

I'm posting this because every time I see it, I'm utterly fascinated watching the transformation. I love how it was reversed so that in "cleaning him up", they actually brought out Rick Genest-aka Zombie Boy-'s tattoos. Like tattoos, hate them, have tham, want them, dislike them... whatever... I just think this is striking and beautiful.

They ask: "How do you judge?"
Good question. One I'll answer for myself.

I'm not a huge fan of house music, either, but I did buy the song... "There Is Hope"- Zoo Brazil Ft. Rasmus Kellerman- because I often need something to kick me out of the doldrums.

Thursday, October 4, 2012

What Now?

The search is on... in the race to better help myself, I also have to know when to say "WHEN!" (Which no one ever really does... you can be pouring forever, and no matter what, you'll catch "Stop," "Whoa," and "Enough..." but no one ever says, "when!"

I've been on a search for a new neuro since tests were brought up "You haven't had a CAT scan in 5 years..." but never done, when the 14 year old portable EEG machine messed up, and the medicine debacle.

I've dealt with the issue of "If I am in pain, and I am trying to more than simply survive, when I can't stand sunlight, when I have been made very sick, when I can barely eat, when I am worried I may have a seizure in public, I get anxious. If I am anxious, I am in pain. And so on, so forth." Also, if a drill sergeant with PMS is more charming than your doctor who makes you wait an hour past your appointment time, then condescendingly shouts "How often do you take excedrin!" at you... (Uh, have we forgotten WHY I'm here in the first place?!) and walks you out in five minutes.. asking for all of your other doctors' reports and insisting, "well, sorry, we don't know... see you in 6 months!" DAMN IT! Well... been here before. Calmed myself considerably---took time and I'm grateful I wasn't having a symptomatic day today although I got very scared when he shouted at me... something about a man in a white coat coldly holding my wrist and screaming in my face that I am his most difficult patient is frightening. I'm sure my pulse rate went through the roof. So, 6 months, new neuro.

Back a while ago, I dealt with similar issues. Turns out 1)The food I'd been eating was poison to me. It also took me turning a color that is often seen in corpses and walking like Groucho Marx to greet my mom one day--- I was summarily taken to the ER, where I passed a kidney stone---to get them to realize, "Oh, it's not just HER." I just had massive medication reactions... to a medication that quote "Is so good it never causes issues!" (Except that lovely rash that made it necessary for the info packet to include lurid photos, septic meningitis, anxiety...)
Nope. Not happening. Family doctor wants to run her own tests, and is standing by patiently, along with a priest, pastor, assorted friends, nurses, etc. Me? Research, and staying far from Dr. Google.

Tuesday, October 2, 2012

Murky Polaroids and Helping Myself Help Myself

I like to liken the brain to a computer--- In many cases, it lets you see bright, glossy graphics, hear beautiful music, smell beautiful smells. Let something go wrong, and the processor doesn't have a clue.
When the brain thinks it's in danger, it starts downloading information from the memory banks... "Help me! Does this work?" "No, Brain, that's Alan Rickman. And I was quite disturbed when you sent me that dream where he kept calling me liebchen. Try again."
(Dreaming, incidentally, is another time when my brain likes to run through tasks, unfortunately, as a result of watching classic horror films and perhaps one too many vintage psychological reports or story of lurid murder, it sends me the weirdest things. I tend to be thrilled when I go for a while minus nightmares. Alan Rickman flirting with me in German was by far the most disturbing. Even more so than the one with Jeremy Clarkson of Top Gear, a Smart Car, and Miss Havisham, of Great Expectations fame. For those who wonder, we took her night-clubbing.) So it's asking me, constantly, "Does this help? Help me! Does this work? Hey! What about this?" And that is why I can't turn my brain off. However, when it restarts itself, it's scary and then I'm left with "Murky Polaroids" in the memory, and in dreams. I'm working on helping it... and on helping it help itself. I'm also hoping to quit being a slave to it.

It'll Slay You

In New York City, a serial-killer themed open house will be going on this Hallowe'en. It includes the sound of people being electrocuted, killers jumping out at you (If I had a dollar for every time my brother's black-clad and strange-looking friends jumped out at me under cover of darkness, I might have a million to pay for the rapid heart palpitations I suffered.)

Families of victims of serial killers from John Wayne Gacy's to the charmer and former suicide phone-line operator, Ted Bundy, to those of Jeffrey Dahmer, are saying, "Um... woah..."
One particularly lurid image, even in flat 2-D is one "honoring" Elizabet Bathory, the Romanian Countess who forwent standard treatments at her time, and thought that the pain, and the death and blood of young girls trusted to her care was better for her skin, which is shown here: the Gothamist

The operator says: "Those (relatively recent murderers) are mythological by this point, and I didn't use anyone in the Tri-State area!"

People like to be terrified. To an extent. A very old murder, so old, its' photographic evidence is a shade of fading peachy-orange-to-black, where dossiers on the criminal are quaintly oversharing: "He is 32, with a medium build, sallow complexion, syphilis scars, black hair and black eyes that look like slits." in graceful handwriting you'd be hard-pressed to see come out of a male these days, where the lurid and sometimes shocking details acquire a patina of age, are interesting. Not something I'd look into re-creating, but interesting,
"We shouldn't mythologize murderers!"
Leonidas was tossed in a discussion somewhere---a needless massacre after the battle of Sepeia.
William the Conqueror? He had his share of blood on his hands.
Henry VIII! Not just the unfortunate Catherine, who was sick and neglected, but Anne and Katherine the Second to Last. And the Bishop of Rochester. And  Thomas Cromwell, after the disastrous marriage to Anne of Cleeves. Thomas Moore. A sketch of him on a talk show had the producers bringing his "friends" out to him on stretchers and wheel chairs.
Of all the mothers in laws at the end of his life when his 6'3"  frame packed on the pounds, while they could all say, "This is my fat, syphilictic son-in law"- only a few were right... he was legally married only 3 times.
The Borgias---although the song about them is adorable, and kudos for having Alexander VI played by a man stuffing his cheeks Brando-style and still singing!--- we are alternatively turned off, shocked, disgusted, but never far from curiosity. (They say Mario Puzo vaguely based his titular godfather on Borgia... but the cheek stuffing was Brando's own.)
While we're at it, many cheer for mobsters! They're fascinating!

What does this say about us as a culture?
We live to thrill ourselves, we love a shock. We can't live in bubble wrap. But how much a shock is too much a shock? Where does that end and good taste begin? Is there good taste on Halloween?

Every costume has the capability to irritate someone.
For all of you going as Strawberry Shortcake, think of all the poor little cupcakes out there who toil ceaselessly, never getting their due...

Monday, October 1, 2012

Running To

Let me not focus on monsters and lightning storms
But dreams of the Diomedes

Let me be as comfortable in both jeans and a T-shirt, wandering, let not mud or weather stand in my way...
As I am in a dress and heels

I won't focus on can'ts and don't knows
But on what nows and where tos.

Let me not look back in anger
But look forward
To never become content when something feels wrong
But to stand strong

Let me never get hardened by the world
It's no crime to feel
And it's a bigger crime to let the certain horrors fill you rather than to love what's good, and focus on what's right

I will not become comfortable, content, in darkness

I will, raise my glass, you bet your ass--- to the light... and thank those who taught me, even accidentally, to stand for me.

Let me never rest until I know I have found that hearth I can call mine, and not laden with the baggage of a thousand wars

But yet, let me know, peace exists in the sweet and simple, a quiet creek, in sun-dappled leaves... in greeting a gentle but boisterous friend, in loud music, in the silence if I remember to take time out for it.. in a hushed nave filled with candles, by myself, smelling dust and old paper, the secrets of the centuries... in the fresh, effervescent fall air, in the brilliant leaves, orange, red, yellow... it is not in running away from, but in knowing where that strength and center lies. And running to.