I blog gluten-free

Monday, January 28, 2013


There are fears and crazinesses around... aren't there always?

But with anything, my biggest goal is freedom... fresh air, the ability to run amok as I so choose. I want to travel, to spend time with friends and family, and not have appointments to dread, to be... human.

Sleep is getting better, not perfect, but natural methods are working without extra medications delaying the melatonin I melt on my tongue.

I'm working on something fabulous... it wasn't just me who had a streak of good luck, among the chaos. Time to bake, it's been damn chilly, and the smell of cookies and coffee is marvelous.

Goals- eventually a small place I'm not renting, a basenji at my side, a porch swing. Smelling ocean air.
Not letting it get to me that so many insist they know me better than I do, talking over and for, not hearing me. I understand concern, but it's frightening me, not having a voice. I'm tempted to do jumping jacks, say something shocking. Like,
"I've got the research going, I've been doing your jobs for months, I was getting there, and you keep saying you want to help, but what about my input? I want to dance, to walk, to hike, to have the freedom to do as I wish. I might even want to have lots of sex that's illegal in 30 states!" (If I do this right, people jerk upright and laugh, first uncomfortably, then with amusement, apparently at me having said something dirty. Um, hi. I have a filthy mind on occasion. I also, y'know- am human, with all that goes with it.) It's tougher... I sometimes have to rely on people for things most people take for granted, but my boots take a lot of mileage, and I am pretty good at running up an incline, and through traffic without spilling a drop of coffee. (I live just off the Thruway, and near a stadium, so heavy traffic is something I can't always eschew.)

I want to simply enjoy- music, the girly stuff as I will, hiking, making mischief with friends. I want to be silly and shocking on occasion. I want to quit feeling fear from people I shouldn't be getting a sense of fear from! It makes me panicky, and then I have to work to quit jumping at simple little things. Right now, movies, a little classic TV, even a little Downton Abbey- I usually sleep through it but DVR and watch later---to distract myself. But it's time to get the world off my shoulders, and help others do so. But to begin with me.

Saturday, January 26, 2013

God is in His Heaven,and All is Right With the World

glitter-graphics.com A list of the joyful:

No more "Stinkin' thinkin'."

What's been keeping me cheered up of late?

Well, among other things, I got published and featured, and while the magazine, Epiphanies, comes out later, my feature is up and I've been added on as a permanent contributor to a great international effort. :)
I am working on following my own advice- as much as I love and want to help people, I help no one if I hurt me doing so. Period. (This advice gets bandied from person to person, and it's almost a joke in how we say it, but not how we mean it.)
My feature can be found at Epilepsy Literary Heritage Foundation- Essays and More. The site has changed and grown, and is beautifully glossy. I can almost smell the leather of the books (And am in my heaven.)... the web designer is a volunteer and marvelous at their duties.

 I am currently using meditation to relax and sleep, and so far, it, and melatonin, are working faster now, minus the Topomax clogging up the body. SCORE! I am excited about this and hope to toast it. Along with this, I also found a new book to pique my interest, As I Walked Out One Midsummer Morning, by Laurie Lee. I purposefully chose a paper version, meaning I have to wait, but it's a good wait!
Trying to remember to take my own advice.

Family is tough. Always will be. But I have to learn that I have a varied personality from the rest for a reason, that being fed guilt for things I can't help is wrong, and that I can love and still stand up for me.
As for patiently teaching and re-teaching, yes, I think I may need help here. This is one walk I know I can't go alone.

Indulged my girly side...
Somedays, when sad, it's helpful to do this--- all but the "Butterscotch ripple ice cream".
I went in looking for entirely inappropriate-for this weather-dress shoes (possible boredom with two or more pairs of socks and fleece lined Bearpaws.) and found this cutie on Mod Cloth for $18. The Louisa Bag-
Not only is it printed using original artwork from Little Women by the artist Louis Jambor, but proceeds go to buy a book for community education programs.

And finally... I can't help but smile and squeal with delight when I see this: Gawker Dot Com- Shetland Ponies in Sweaters. Go. Click. PONIES. Cute Ponies in SWEATERS! They're so fluffy! I think I'm gonna die! Squee!
Ahem. I did make one photo my computer wallpaper for a reason...these little guys are stinkin' cute, and oh my God... I'm going to Scotland and getting a Shetland pony who I will dress in sweaters... (SQUEE!)
Scotland's page featuring this ad campaign has crashed, killed by cuteness.
I agree with Gawker's closing line: "As for Fivla and Vitamin and their custom-made Shetland wool jumpers, they can be found at the Thordale Shetland Stud Centre and in our hearts."

And I leave you with- I got you, babe.

Friday, January 25, 2013

All I Need is a Spanish Drunk to Translate...

Communication of late, with people I'm the closest to, or so I thought, has taken on a bizarre turn I can only describe as this... "Remember that counterfeiting episode of I Love Lucy? All I need now is a Spanish drunk and a few over-excited gendarmes." (It might not solve anything, but I'm laughing thinking about it.)

Yea Gods!

When I have good news, I don't need a list of everything that went wrong, everything that is wrong. I'm getting more and more of the good. The goal right now is to heal myself, to laugh, to prepare myself, so I can celebrate all the good and prep myself.

I cannot handle everyone's problems. This is apparent. I do not need guilt for things that I could not help, things I'm sick thinking about. I don't like it when I have to keep explaining, "What part of, when I am taken off medications, is it sane to go to a doctor who will put me back on and on three more besides, starting a vicious cycle, and being nasty. And knowing that things are hurting me, you "forgive me" for being sick in public (Oh, thank you. I'll try not to do that again.)- And then, I get a full on bitch-fest for daring to be so, instead of hiding?! I am a repository for everything? I have to know who died, who is sick, who is in the middle of a family battle, that you wish so and so would do XYZ? I have an idea. Try it on the other child. G'head! Jeff loves intrigue! In fact, I'm certain I'll hear his response from you later.

Look, while I don't like feeling sick, nor out of control, nor not being able to be understood, I also don't enjoy my privacy, my choices taken. I don't appreciate getting a lecture MEANT to hurt me, out of love of course, you'd only burst my balloon out of love, yes?-and don't want to keep focusing on the bad. STOP. We discussed this. And three days later, you forgot. But you can remember bad things, and anything that doesn't fit your "good girl" view of me forever. You can't remember a plant I bought WITH you when I mention it, but insist I bought medicines I never bought? And when I check on your health, it's because I love you. I understand you're in pain. I just wish like hell you'd understand me. My privacy, my rights, including moving on and being happy, and being myself, not the mold you made for me, and doing what I must because what you are trying to do hurts me. I love you...quit hurting me. You are not Joan Crawford.

Tuesday, January 22, 2013


I'm fucking TRYING to pull myself out. It's not goddamn easy, when you have good news, are excited about things, and get a list of all the horrible things you are, all the things that are horrid about what you're happy about, and a list of complaints, because goddamn it, you're the only one who will fucking take it and lay down like a rug rather than fighting back. That when things are done on my own, they're not goddamned up to specifications. But I was happy! I'm brightening up! And now I get swamped with another fucking wave of guilt?! And Mom... let me tell you- this is why I don't ask for help. And I'll never, ever do it again. I'll pull myself out. Thanks so much for seeing a happy mood and layering guilt on top of it, seemingly expecting me to control everyone's behavior, and once again blaming me, when, fuck it... I had the fright of my life, and neither you, nor the doctor, nor the goddamn "health worker" called in to "help" me with the next round, as we wait for solutions, listened to me, preferring to talk over me, fill me up with fucking mango tea and shushing me when I tried to have a say in my own goddamn care, and wondering why I need to vent somewhere! I have nothing! You gave me no out! And while I feel horrid over your thyroid, you use it, and my illness to beat me over the head... I am supposed to be quiet... I wasn't supposed to talk about it, and everything would have been fine. Just like someone I don't know touching me is not supposed to frighten me- well, it DOES! I'm still holding back, because I'm still frightened over where to go. There's stuff I still don't say until I'm ready... oh, but there's things you insist on discussing, when I'm happy, when I'm eating and content... why can't I say things once and get them done! Why won't you people listen?! Oh, I wasn't supposed to react in fear. I saw a strange person come towards me. My privacy had been breached. They had their hands raised, and personal experience said "Oh, damn..." I expected a HIT! No, I can't hug first. And someone with an MS degree should know better than to do this without warning first! I had to deal alone! Because you blamed me! Because you still do! And anytime anything goes wrong, if the butcher gives you your steak a 1/4 pound too light, you're going to attack me! While I can politely request for things...a new neurologist as I am uncomfortable, all to be talked over, all to be treated like I have no value. You know what? Go ahead. Do it. It hurts less than the threat.I'm tired of dealing. I'm tired of not being understandable. I'm fucking tired of playing good girl, while someone else can talk shit, fuck off to God knows where, go missing and is treated like fucking gold if he so much burps in your general direction, and his opinion on Macedonian potties of the 12th century is worth is goddamn weight in horse shit. Yes. You, like everyone else I am feeling guilt over- I fucking love you. Your health is important to me. Goddamn if it doesn't distress me. But I'm not going to fault you for a mistake, a bad day! I'm going to call it a bad day! I'm appreciative, but I'd like to be happy... I'd like to be able to mention something joyful and not get a whole mouthful of horrible, nasty accusations and blames and whatever else back. I'd like to go after one opportunity. I'd like certain freedoms you refuse me. I'd like to FUCKING STAY HAPPY. I was joyful. I was optimistic. I walked away thinking, "Yet again, no one heard me."

Serenades From Mr. Ed

It's never a good idea to watch or read the news before bed. (Yes, that was very obvious, and I deserve a face for that... because I just made a slightly more animated version of the one above.)
But I like to get my news from varying sources, and like it the weirder the better. (Weird scientific news about jelly fish being used medically? I'll dig in and be happily clicking for hours to find pros and cons and disagreeing articles.)

I caught something on the breeze about budget hamburgers in Britain containing horse, said "ick", made a vow both to go see and ride horses in the spring, and not to buy budget burgers, and promptly fell into what is, of late fitful slumber- it's getting better, but it'll be time before I'm back to normal and can quash disturbing dreams and night terrors- and woke up wondering "What the hell?!" after having what isn't a nightmare, but surely is strange... I was walking in a meadow and came across a horse, nothing big. It started talking. (Yeah, I think that's shaking off the Topomax messing with my dreams.), thanking me for saving it. I tripped fell over a low wall, where the devil did that come from?! and in a sweet bass voice, it began to sing the theme from The Greatest American Hero to me. (I missed it the first time 'round, but have caught most of it on Hulu.) Great. Mr. Ed is calling me clumsy! After a "HUH?!" I couldn't help a giggle. Since someone has actually sung that to me, I couldn't help laughing even harder. Yes. I'm crashing into walls right now. But I think I'm OK.

Sunday, January 20, 2013

I'll Scream Tomorrow

More good news rolled in. Not only am I being featured, but have been offered a position as a regular contributor at Epiphanies.

As for the rest... Whatever fear, whatever confusion--- there's good news of friends, and the above to toast. Yes, it's been rough, and I got snappy... but mistakes get made. I can only try to move forward. I'm trying so hard to sort out things, I'm not even coming off right to myself, but I don't want things messy and dark.

I'm asking questions that might seem obvious... but got a lot of bumps and fears in the past week. Those, I'm putting off. Knowing that medications don't work for my strain of epilepsy is a good thing. The shaking off of the remaining bits is tough. Not phrasing things right, finding myself smacking my head after I've said something that wasn't the way I wanted it said.Or forgetting to mention something good. Changing that.

What do I want to gain, exactly? This is what I need to work on so I can give myself. If anything's worth doing, it's best if you do the grunt work. There's a time and place to ask for help. I'm not there.

Do I have it in me, just yet, to fully come to terms with some things... to drink tea, or cry it out? I realize now... no.
I have it in me to laugh for now. I'm having a Lilian Roth moment. Time to focus more on being human... and there are those things...go ahead, laugh! I don't do them for others, I do them for me!- take a break- absolutely must, again. Definitely toast the happy stuff. A friend's deserves a loud cheer. For mine, I think something quiet- find something I wouldn't normally do, work up something... long hard winter- the stress is on everyone's shoulders.

So, yes. I'm frightened. I'm frustrated. And, for God's sake. No. I care about life out here---where the wind ruffles hair, and you can smell grass, where snow falls, where people cook, etc. That's another thing... it's damn frustrating. Don't assume. Try, for God's sake, to listen for what I'm saying, not what you're hoping I'll say.

Friday, January 18, 2013

I'll Just Wave My Magic Fucking Fairy Wand, Shall I?

I'm putting this down, because I need to organize this. I realize I'm tired already and will be dropping (really late... I let myself get into some work and didn't get out of it- bad way to distract myself.)

The major issue, the tonic clonics, and the localized limb seizures, are medication resistant. I kind of had that feeling. The problem is, that I've been reacting badly to the chemicals being put into my body. Adding in people who are "helping me" but are actually hugging me (WHY?!) and giving me the full monty with "psycho babble"- the hippy dippy, lovey dovey bullshit, the "best interests" conversation, the promises to do something, but then doing nothing, leaving me to do everything, and to top it all off, having to sort an insurance screw up, deal with the county medical center, and oh, for joy... the game of "I'm going to ask you a question. Then I'm going to insult you. Then I'm going to bring up everything horrible you hate talking about, while blaming you for the fall of Rome, making these suppositions about all and sundry, and not actually letting you answer me. Then I'm going to get mad because you didn't answer me and got frustrated trying."
To top it off, I occasionally have mini seizures WHILE trying to talk. And people talk over and for me. And people kept touching me. Hugging me. Coaxing me. Making nasty accusations, bringing up the past while alternately blaming me for having the nerve to be this way. Then, "I don't want to hear it. I had a hard day," OH, YOU HAD A HARD DAY?! A hard day spent emotionally smacking me?! I can understand how that must feel! I've felt horrid, Ma, that you've been having trouble with your thyroid, but you know, it kills me that you won't listen- that you've been alternately playing the smack and a kiss game lately. If you'd just hit me, I'd hurt less.

Do I want to be this way? No! I'll just wave my goddamn fairy wand and fix it now! And while I'm at it, I'll make my brother do whatever Mom wants, and my niece less like me, and Fedex will do whatever they did wrong right, and the post office won't be screwed up, and Rome won't have fallen...

Know what? I'm looking for a goddamn solution. What I'm getting is, "Do this, and best interests that" "Best interests" means "We take away everything you are, and have, and you are grateful we let you live." I've heard the bullshit before. Let me, for God's sake, if you won't help me, if all you can do is make me drink tea, find the solutions myself. Because you can't help me, if you're shoving me around. You can't help me, if I feel forced. I'll automatically armor up. This is something I'm trying NOT to do. If I am not able to speak for myself, then I am not safe. Don't say "We care" and mispronounce a name on a chart RIGHT in front of you, or refuse to listen to me, but let everyone walk on me while I'm struggling. Don't yell at me a day later, while I explain something else, for having a hard time processing! Do I want a new appointment? Yes. I want a new doctor. One I can talk to. One I can get to listen. I should have this ability.

And if I tell you to kiss my ass, I hope it's understandable. I'm not taking it. YES, I'm pissed. YES, I'm processing it. If I get help, then I'd hope I get it from someone who might actually understand me, and let me fucking talk.

1)Bro controls Bro. I cannot, in any way, have power over him. I do not want to.
2)If there are family issues, they are to be sorted among those people.
3)What Fedex does, is not my responsibility. I do not have control over them.
4)I feel horrible over your pain, and while I can't do anything, the guilt trips being added are hurting me too.
5)When something good happens, the bad stuff should not be dredged up
6)The past is that. Plain and simple.

Monday, January 14, 2013

Process, Not Progress, Building, Not Breaking

I never enjoy stress. No one does. When it comes down to the stress we can get and give from and to our nearest and dearest, the first words of advice I give to anyone beginning a struggle:

Build your network.
Make your own family. Love your blood. Understand that they may be strange to you, and you to them. Love them, try, but build your supports, and build them strong. Sometimes, what is closest can hurt most. This being said: Never stop loving, but love, and fight for yourself too. This is tough at times. I'm stating the obvious. If I'm quite honest, I'm smarting from the latest and know that I can't let myself be held down or let that stop me... I've made progress and process (Although, I remember a teacher saying "It's process I want. I want to see you work, I want to see you fight for yourself. I want you stubborn. I want you to tell me off on occasion, but I want you fighting. Progress is important, but the steps to get there are far more important." Now, if I wanted to simplify this, I could say, "Getting there is half the fun," but I'm not sure if I'm being sarcastic or not.) 

To build a house, you need a sturdy foundation. Most point to the basics, first DNA, the helix made of the protein building blocks of G,T,C, and A. Of blood. But on occasion, it is blood that can waver. Sometimes, you find a way to make a network, when you chance, when you click, on something that cannot, in any way be described as blood. But if it is water, then we must remember that water can change directions, that it can carve new paths, it can weaken metal. If these attributes are thought of positively, then fine, make sure you have your "water", too. If this is not right... then you have something marvelous but that is so beautiful, so marvelous, that chance, that serendipity, of finding people for whom "friend" is unworthy, as it is too weak of an adjective and used too loosely now. This new family- you may need them. Don't give up on your blood, they are your link, there is love, there is a strange power there, somewhere, that I can't name. A nihilist might say, "Could that be simply nostalgia?" (To them, I dryly say, "You obviously don't know me well, do you?") Show them, if they hurt you, how you stand strong, but still love them, in word, in deed. Don't return pain for pain. 
Friends of all sorts can do this too; you must do the same. 

Remember that letting the hurtful words stop you disrespects yourself. Love yourself. Take time to rest when it gets crazy, and remember that if you've been battling, letting nastiness creep in, letting yourself become what you hate, ruins everything, and your foundations lie in ruins.

Saturday, January 12, 2013

Things That Make You Go "Huh?" in the Night

Sometimes, my dreams can get particularly odd. I've had my night terrors...some being mercifully short as they're replays of events I remember in a fog...with a vignette or black mist around everything. And lately, it seems as though some of those got scrubbed.

There's the funny ones... during moments where my medications need a tweak, watching classic television might not be good for me. I actually thought at one point that Major Nelson and Darren Stephens were having an affair, and did not want to be there when Endora showed up! (Cue Jerry Springer "oooh!") This was basically my mind stitching things together while trying to deal. Bad Brain. You have a more messed up sense of humor than I do, and that's pretty tough!

Then there were replays of that dark night in '03. I think part of me wanted to sort out how I went backwards, to have my head slam on concrete...  to clarify events that exist in a fog. I'm guessing 200 pounds of boy using force on a 100 pound girl means that the body's natural habit to fall foreward... because I know that Hollywood swooning is wrong and one faints forward, usually... was counteracted. I do tend to use logic on the illogical. I think too much, and can wake myself up thinking. So tried to apply logic to this, when none really exists.
But... something new happened. There was my father, gone in 1995, standing there, on that cold street, a rainy night in the summer, I remember it being about 60 degrees, I remember needing a sweater. He's hale and hearty, all goofy smiles and 220 pounds... and wearing... by golly... it's a cassock. "Hey, kiddo," he says, booming, bass voice. "Time to wake up. It gets weirder. You don't need to see this." Great. My brain is working overtime, and has my father playing my Clarence?

Now if I could go back to dreaming of sailing, or puppy dogs, that'd be most lovely. And um, thanks for the angel. I guess snapping awake and saying "Huh" is better than the alternative.

Courtesy of Bored Panda, 15 Interesting Facts About Dreams

Thursday, January 10, 2013

She Shoots, She Scores?

In marvelous news:

I got an article published on epilepsy and meditation. This is mildly amusing to me considering the stress lately. It will be in Epiphanies Magazine, via the Epilepsy Literary Heritage Foundation. *Beams*.

A few "Hurry Up and Wait" business calls... oh, for joy! Guess whose hurrying, and guess who is stuck cooling their heels while the other takes their leisure? "Why yes, Miss Beth, we'll get back to you... um... shortly."

Working on stress, etc. Gave myself quite a load. Bad, bad. This is being rectified immediately. If there is an issue, I'd prefer it be taken care of shortly and moved past. Kind of feeling an urge to give myself a V-8 smack for the last round of it.

Lately, and I'm thinking it's 7 hours of handwriting and wastebasket basketball---she shoots, she scores! The crowd goes wild!- Excuse me, but a perfect game comes but once for me!-then another good 7 going through Microsoft Word and being even more persnickety than even the red and green lines (not as many as I feared, although some words I've had to use get caught every time by spell checks.) were affected me.

 I am deeply sick and embarrassed and do hope to rectify one situation in particular if I can. For this, I suppose, I must simply pray and for now, do what is right...and not screw up like that again. The first is a mistake, the second is being a horse's ass.

Next week, vitamin shots, as I am repeatedly reminded, as I did not dread next Wednesday enough.

The phone that was not working has finally been rectified and I'll be taking care of that.

All in all a success... and I am-almost floaty. Twenty-four hour flu nearly gone. Bless you gent, coughing on me at grocery store. Don't do that again.

Sunday, January 6, 2013

A Winter's Day Snapshot Memories&More

Learning to talk isn't so easy when all around you is noisy. I love people- I tend to need to heal inwardly. Over the years, I found ways of communicating, some good, some bad...and still find myself wanting to smack myself in the head when I have to ask, "Where the hell were you, and have we met?" I've also used pantomime, some ASL, my facial expressions, photos, (Sometimes I get silly about it, when a playful mood strikes.) handwritten notes, or black and white notes--- I prefer the hand written because they can show emotions better.

So, hi, my name is Beth. I like Space Invaders, chocolate, have enjoyed Tolkien since I was a wee mite scaring myself with the Hobbit cartoon in the 80's. (You know the one, "Where there's a whip, there's a way")- I enjoy the stars, ocean, manicures, (most recently the Sally Hansen magnetic mani, if only because some nerdy part of me felt like saying, "Magnets, how do they work?", reggae, for its' 60 BPM, like a heartbeat, I calm myself with meditation, at least 20 mins per day, my music tastes are varied- for example, you may find Joan Jett's music,- Cherry Bomb, I Love Rock 'n' Roll, etc. and her cover of the Mary Tyler Moore Show theme, and the original, then suddenly find yourself listening to the Temptations in Italian. I've been a caffeine addict since... God knows how long. I love Dolly Parton. Actually, know what? If you want to know me, ask me.


ST started at 18months. One thing that stands out, and this might be why I suck in my breath when I'm irritable, is the soap bubbles and straw trick. Now, I know to breathe out. Then, I knew that straws were for drinking. Baby Logic. So, I got a mouthful of Dawn. My face must have been hilarious, because that laughter sticks with me. But I caught on and soon realized I could blow bubbles in my drinks for fun. It must be entertaining to sit in a restaurant when Baby is noisily blowing bubbles into her milk or soda.

Well... that's it really. This was... a snap shot, I think. Brain working overtime.

And just because.

Actually: There is someone out there who needs this: You. Be nice to you. Let someone else start doing the giving. You've been hurting yourself far too long.

That's something I never tolerate. I don't like when people hurt themselves- not for any reason. Start smiling... start reaching for the light. It's coming.

Tuesday, January 1, 2013

Lucky Thirteen-May Joy Be Unconfined

Happy New Year! This year begins the third year of freedom for me, and I intend to mark it well! I began it with wishes and non-resolutions---to keep on fighting and working on improvements. Things I didn't want to drop and maybe pick back up for Lent, but things that are beginning to click that I'd like to see bloom. I hope to see that for everyone. May it bring with it, joy, and peace. If it needs to change, may it be changed, and may the effort be enjoyed and not endured. May I learn to be more assertive. May I learn to let what isn't in my control- my reactions are mine, others' aren't- go. May I not second-guess, but laugh. May there be joy, unconfined. May we all enjoy health and may we not make promises, all to put them down again by the third. May 13 be lucky for all. Let me remember that improvement is for my sake- but if it shows, it shows. That a bad day here and there isn't anything but that. May there be more happiness than any of us know what to do with. May there be new foods, better health, new horizons, travel, less stress, for family, friends and I. Be blessed, be joyful.