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.

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
and
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.

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! 

The Purple Pumpkin Project

The Purple Pumpkin Project: 

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

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

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

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

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

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

The Purple Pumpkin Project

 Additional links can be found at the American Epilepsy Society

and the Epilepsy Foundation of America and its regional chapters

In the UK, please contact, Epilepsy Action UK

In Canada, help can be found at Epilepsy Canada

Courtesy of eszter, Flickriver Creative Commons License
This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 2.0 Generic License.

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.

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.