brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
Yeah. The snow and snain and slush was all worth it. I got to the CVS pharmacy and back by bus without incident. Plus, a free battery operated shaver thanks to CVS Reward Dollars and coupons (I may never need to balance painfully on one-legged in the shower again).
Ah, snow, you've arrived. This part is cool with me. You are soft and powdery and easy to shovel. No ice just yet. You're barely a few inches. I can hobble and wobble and limp and stagger easily.
You see, snow, I don't actually hate you. I only hate your frozen ice parts. The part that really hurts when I slip and crash. See, at least right now you are still powdery and cushiony enough to help me land softly.
I don't hate snow... we just don't get along.
Now I must decide if I want to take the bus to the pharmacy now or tomorrow. I don't know if it matters anymore. These particular refills can wait a couple of days.
Also, whoever invented those magic gloves that let you use your smartphone must have known about Raynauds Disease.

I totally went out to the pharmacy. It started sleeting. A guy asked me if I needed a ride home. He had seen my cane.
Yeah. The snow and snain and slush was all worth it. I got to the CVS pharmacy and back by bus without incident. Plus, a 'free' battery operated shaver thanks to CVS Reward Dollars and coupons (I may never need to balance painfully on one-legged in the shower again).
I'm learning how to use the cane to help me march, scrape, and also test for icy spots. I think the only actually good thing for me is that cold weather helps my asthma issues ease up. Part of me really wants a quad cane for more properly balanced stomping through snow.

To quote Scottish singer Susan Boyle regarding her official autism diagnosis: "Now I have a clearer understanding of what's wrong and I feel relieved and a bit more relaxed about myself."
-Also: why I won't stop talking activistly about it and why I embrace names and labels, but also why I will stay silent at parties, since I seem to be a talking disaster.
Time and place. Time and place. Just because medical science words are a ASD special interest for me doesn't mean I should, well, you know the rest.
(To certain people:
I'm not like you. I embrace diagnostic labels. Names have power. I know what to do with a named thing. You truly feel I must be giving up and in. I truly feel you must not know me well now that I am changing again. Always changing in tiny ways no matter how deeply I stay predictable and ever the same. So I have decided to personally not tell you about all the new details my changed self parts. You don't need to know and I don't need to be smacked down for speaking.
Facebook and LiveJournal are places to chat with like-minded people who will give me stories. You don't have to listen. It's okay. It's just random life.)

Also. Jupiter has been randomly lying on the bedroom floor on Adam's side of the bed, forlornly, so I grabbed a couple of Adam's tee shirts and draped one over his pillow and one on the bed so Jupiter could be surrounded by Daddy's scent, and so I could wrap him in a shirt and snuggle him if needed. He is very emotionally needy and co-dependent, far more than Rose who literally begs for love, so any chance to make the boycat happy and not depressed is a major goal. He's the kind of cat who will gently flop himself onto your pelvis and torso for hours just because you're on the couch. He always seems so anxious. He just wants to know if you will love him or feed him and he'll miss you when you leave. He meyowls up from the bottom of the stairs because he has a toy, he wants to find you, and he knows how great the acoustics are. He's harmless and wonderful, and very very attached - I cannot bear to think of what will happen to him if something happens to us. Poor sweet puppycat.

Speaking of scent, Adam got me a bottle of perfume during his Las Vegas job trip a couple of months ago - Nude by Rihanna ("Fruity aromas of guava, mandarin and pear are located at the opening of the composition. The heart is blended out of white flowers: gardenia petals, velvety Sambac jasmine and creamy orange blossom. The base consists of sandalwood, vanilla orchid and "second skin" musk."). We both love it on me. Sweet and soft and floral and deep. Now I really want Killer Queen by Katy Perry because it is a fruit and flower explosion ("Top notes include wild berries, dark plum and bergamot accords. The main note of the heart is velvety red flower, Celosia, but there are also Sambac jasmine and rainbow plumeria. The base contains cashmere, patchouli and liquid praline"). Oh, indeed.
My personal signature scent, created via Etsy, called Moonlight Witch, consists of real pure extracts Amber, Blue Lotus, Dragon's Blood, Coffee, Chocolate, Green Tea, Coconut, Frankincense, Myrrh, Blood Orange... but I do love exploring various notes and scents when I can.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch)
BTW, I'm officially on MediCare Part B (retroactive as of November) and earlier my Part C Aetna Medicare ID Card arrived, which won't be active until January 2014. It is all good. It will still save over a hundred dollars a month between all insurance and drug coverage. All my doctors are covered, all my drugs will be cheaper, and I have carefully read, re-read, and examined all the paperwork with a magnifying glass (no, really). So December's SSDI check will be less two months' insurance payments, and then January's check will also be less the Part C payment, but it is all good, because it is still cheaper than what I am paying under MHIP Carefirst in general. I feel... well, I don't know if "lucky" is the best word. But it is not as bad as it could have been. I mean, I also ride Metro and local bus transit for free thanks to being disabled and a member of Metro Access paratransit system.

Some fully able-bodied people like to scold me for feeling grateful that I am disabled enough to qualify. It's not about that 'grateful' feeling or that whole "skip to the front of the line" thing. It's not about any of that. It's... I dunno. It's about taking whatever disordered damage you have and turning it into a personal individual advantage that works in your favor. It's about accepting and embracing the awful pained cracked parts of life and seeing that they have been opening all these shiny doors, after slamming closed other doors so furiously that the whole building shakes and walls crumble. You may never be able to walk through those slammed locked bolted doors that most able-bodied people get to glide through easily, but you have all these other doors opening just for you, ready to lead you to places where you, personally, will feel more comfortable, accepted, embraced, and understood on a level secure with your disordered damage. It's not your fault, and the places these doors lead you are fully aware and have already set up a spot for you. You are always safe in those spaces in between.

Like... having mild disabilities. For example: Having mild cerebral palsy is like being in interstitial places constantly - interstice being a small space that lies between things; a space that intervenes between things. Neither completely here nor there. A space in between. A crack in the continuity. Mild autism in that nobody believes me until they spend a few word-filled hours trying to decipher my brain languages. Mild ADD and mild OCD and mild/moderate but fierce migraines and headaches and mild/moderate but fierce epileptic complex partial seizures and mild/moderate but fierce chronic pains and mild inflammations and and this and that. Mild mild mild. Haunting and interstitial. Never bad enough to cause me to be rushed to a hospital, never simple enough to merely pass by with a handwave. I am those spaces in between, as are many, many, many people with certain neurologies. We are in those cracks. Oh, they say, it's all right, they're not too bad, they could be worse, they say. And then what?

Any fellow disabled folk and people who understand want to chime in? Am I making enough sense here? I feel like I am.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch)
Quote from a friend that applies to me in a scary way:

"If you really feel like picking a fight with me, you will have to wait until tomorrow afternoon. I'll need at least two good meals, some meditation, a comedy film, a squeezable exercise toy in one hand, and a muscle relaxant drug that will help me type properly without muscle pains and tensions.
This is why I like arguing online: We each get our points across without interrupting shouts, we can research and cite our sources properly, we can explain exactly why the other person's argument is fallible, we can defend our own position logically and rationally, we can actually get words in edgewise without stammering and snarling from both sides, and we can save our vocal chords from getting sore.
I hate debating in person. My opponent loves to tell me exactly what is wrong with me in ways that don't even make sense, and he or she refuses to let me explain why that argument has no basis in reality.
Let's say, for example, that he or she decides to pick on the fact that I have a terrible memory in general but I can easily quote my favorite books and movies. Do you know why I can easily quote my favorite books and movies? Because they are my favorite books and movies. It has absolutely nothing to do with having a poor memory overall. It just means that I've read certain books and watched certain films often enough to at least paraphrase, if not fully recite, entire lines of dialogue. See, people with brain issues such as autism spectrum disorders are able to do things like that. Having a disintegrating memory while being able to recall very specific things does not mean that I am pretending to have a selective memory, and frankly I feel insulted when it is implied and inferred.
I am chronologically young and neurologically aging. I also have many friends going through the exact same process. I talk about my experiences often, so people like me can know that they are not alone.
If you want to fight me about that, if you want to accuse me of deliberately living inside my brain disorders, please come inside my brain disorders. They're all connected, so it's like a fantastic patchwork house. My brain has a very comfortable couch. Would you like some tea? I just got some red tea. I have decorated it with my disorders proudly. They are part of me, after all. They are part of who I am. Aren't they beautiful? Like shiny, sparkly, broken puzzles. I may never find the missing pieces. That's fine, though.
Did you know that in Japan, when a ceramic sculpture is broken, they weave gold through the piece when putting it back together? Kintsugi: the Japanese art of repairing broken pottery with gold. The idea behind it is that the piece becomes more beautiful and valuable because it has been broken and has a history. I am full of gold-filled cracks. I am very proud of that. I am proud of my disabled and handicapped history. My life is made of gold!
Oh, please don't look upset! No, no, please, sit comfortably. I hope the tea is to your liking. Yes, even that mug has gold fillings, Even the couch is sewn with gold. This entire place is filled in with gold. And it is lovely.
Wait! Did you mean that I use my disabilities like crutches to make excuses for being in pain? That's ridiculous. I mean, I certainly don't mind magical thinking, but you can't make something that extreme happen just by imagining it. I'm not imagining it. I'm living in the right now. And, like many disabled people, my right now means having a body and a brain that feel more injured and aged than normal. I talk about this so that others like me understand, so they have answers to questions they are too worried to ask. Sometimes when you approach age thirty it can feel like age sixty, for some of us. That is why I am an activist for certain disabilities and an advocate for certain health treatments.
Oh! Oh, my! Is that also why you're angry at me? Do you believe that I use my medical problems as an excuse to do nothing while I am young? That is the silliest and most untrue thing anyone has ever assumed. Perhaps you should talk to some of my disabled activist friends. They will tell you the same thing. Life is hard for everybody. But it is sometimes a little bit harder for disabled people. We're not special snowflakes. Although snow and cold do sometimes make us hurt more!
Have some more tea. It's very calming. We need to be calm for this fight.
Just let me know when you are ready to fight. I need to do some meditative qi gong exercises to prepare. Just please keep in mind that I would rather we each complete a piece of debate without yelling over each other. It is much more difficult to weave healing gold threads through words."
-Written By A Disabled Gentleman Who Shall Remain Anonymous, And Who Reflects My Exact Thoughts, Feelings, and Personal Beliefs With Incredibly Frightening Accuracy To The Point Where I Could Have Written Most Of This In Various Bits. Not Kidding, I Think This Guy Shares My Writerbrain.

Anyway, speaking of the art of using gold to heal broken things!
http://www.pinterest.com/uberECOcool/kintsugi-saving-broken-ceramics-with-gold/
brightlotusmoon: (Snow White Ruby Blood Dragon Witch)
Dunno why this made me so freaking happy: I found this pet store where if you buy from their website, it's all free shipping and there are brands they don't feature in stores, and the amount of food will last my three cats about *counts* two to three months. It fits in the budget and then some (I got the brand Wysong, since discounts are awesome). It's much, much better than going to a store and buying eleven pounds of kibble for forty dollars, a bag that lasts a month or a hint more. I still don't like feeding my cats standard drugstore foods with the corn and the by-products, anyway (except for Purina One Beyond in the yellow bag since there's no corn or by-products - I will make exceptions for that). But the high end specialty brands try to wink wink and charge as much as they can and that's stupid.
I remember this one lady who chastised me hardcore for not feeding my cats the best of the best all the time, oh my gods, how dare I. Now, I have fed them brands like Solid Gold, the super ultra premium high end stuff, and the cats loved it. But I find it the height of rudeness to actively get in someone's face about the quality of their high end pet food versus the quality of your high end pet food. It's like comparing apples to prettier apples. Besides, as long as there is plenty of nutritional density, the cats will eat less at a time, saving food amount and money. Organic apples over here versus shinier organic apples over there.
*shrug*
The skullpains persist. Migraine or not, they annoy me. Caffeine is part of my medicine routine. In fact, I have banned people from telling me that caffeine and coffee is bad for me. Full stop.
Adam has been working, working, working, working, working, to the point where I think he'll get one day off this month, before we leave for the week of Thanksgiving. We will use that day to visit Mikey in the Annapolis school for Adults with Developmental and Intellectual Disabilities next to Mikey's group home. And we'll probably do some quick easy shopping for the freezer. I have two friends to watch the cats while we are gone, and at least one other to come by when possible. I have plenty of medication to see me through, and after my next pain specialist appointment next Wednesday, I'll have plenty of more medication to come home to. So far, life seems to be going relatively perfectly for a disabled person on a severe budget.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch)
A collection of replies I've given during a CP support group discussion about spastic muscle spasms that are more stiffness than twitching.
*
Oh, that fist thing? I get that every morning. I actually do say, "Fist clenches, impossible to willingly unclench it, must actively attempt to unclench fist, since brain is not making it work."
*
Augh, quad spasms. Hm. Um? (I have epilepsy, partial seizures, and it really is so not like that, so I'm thinking...)
*
Okay. How about... "It is like when your muscles tense up after you work out really really hard and you cannot for the life of you get them loose or relaxed, and it doesn't stop"?
*
Yes, NOT TWITCHY. Painfully clenched doesn't work?
*
Exactly - that's what I was trying to say. Your muscles are so tense and clenched tightly that you must consciously, willingly, actively attempt to move... rather than just moving. Example: You want to wiggle your fingers? They wiggle. It just happens. But with CP, it can't quite happen. You need to kind of force it. You need to tell your brain to make your body move.
I call it "microspasms" - you can't really see them, not like a twitch. But the spasm is so tight and small that it is more of a severe stiffness.
*
That twitchy spasm is probably more like myoclonic jerks, which are common. The non-twitchy spasm is more like the fierce stiffness and tightness one might get after working out at a gym for hours or lifting very heavy things (to put it in AB perspective I guess?). You know how people will say "Oh, I just got back from the gym or yoga or my workout class and now my arms can't move, I'm so stiff, ohh, I hurt so much!" and you just kind of... look at them? And you almost, almost want to say, "Yeah, I get that. Yeah." Because, you know, cerebral palsy with spasticity is almost like that except kind of forever Lulz? But you hold back. Because pain is pain is pain. I can't compare.
(Although I have known people who have told me, to my face, "You have no idea how much this hurts!" and I seriously bit the inside of my cheek.)
*
But yes, that extreme tense and clenched stiffness in which your muscles cannot work by themselves, unless you force them to. That is what I call it. :p
*
brightlotusmoon: (Snow White Ruby Blood Dragon Witch)
[Originally posted in two disability forums and chronic pain groups]

I've realized that I may be the only person here who has stopped applying Spoons to myself. And there may have been some miscommunication or misunderstandings in other groups and forums. I am happy to call myself a spoonie and use spoons, but I use spears more.
I really wanted to explain why.
I'm totally happy with the Spoon Theory, but I decided to expand on it after a discussion with a friend who has almost thirty separate health conditions. So, I wanted to tell you all what I mean when I say Spears instead of Spoons. I'm linking to some of my blog posts that talk about my Spear Theory.

I know this is a lot of links, but they really explain why I use spears. I am still a spoonie! I do use spoons. But I also use spears. They just apply more intensely to me.

And then there is this!

http://internal-acceptance-movement.tumblr.com/post/61136577036

- I emailed the creator of this artwork, and she was incredibly flattered that her piece reflected the exact thing I feel about myself. It is so uncanny that I keep coming back to it in awe. Every time I look at it, every time I read it, I get chills.Ah, and here is email exchange between me and the author:"Hi Jenny!
I recently saw that extraordinary art about being your own hero in the face of chronic pain. A friend said, "This is your Spear Theory!" And it is. I was born with cerebral palsy and a host of issues including fibromyalgia, major depression, panic disorder, a spectrum disorder, and around two dozen separate diagnosed disabilities. I created The Spear Theory as an alternative to The Spoon Theory. I'd love to chat with you about it!
In fact, here is a note I wrote up about it... and isn't it amazing how well your art piece illustrates what is in my head when I think about my theory? Because I always imagine being outside in a forest, wrapping myself in bandages and armor, waiting outside my cave-like fortress for the Pain Monsters. [Note Attached}
-Joanna"


"Joanna,
That's so amazing. I love that. I love it so much, and I love how it instills more of a self-empowering connotation to the situation than the Spoon Theory (which still stands as a strong theory, but the connotation differs greatly, I'd like to think!) It's so funny how my comic like, pretty much EXACTLY depicted your Spear Theory! The universe is crazy sometimes, I swear.
And thanks so much for sharing with me your story and experiences. To be honest, I didn't even know about the Spoon Theory prior to this e-mail and its ties to fibromyalgia, so thank you for enlightening me.
You're such a strong soul and individual, I can already see that just from reading your livejournal posts. I don't even know you personally!
Keep being beautiful, okay? Keep writing, keep sharing your experiences.
I only wish I had half the courage you have to face the day from a day-to-day basis.
Much love,
Jenny"

The fact that she hadn't even known about the Spoon Theory and had described the Spear Theory so well was also impressive in a very Jungian way.
Here are my blog posts tagged with the tag 'spears'. Feel free to browse.

http://brightlotusmoon.livejournal.com/1473230.html (the entry that started it all with my friend; aka "The Genesis Of The Spear Theory. Hi, Mandi!)
http://brightlotusmoon.livejournal.com/1520669.html
http://brightlotusmoon.livejournal.com/1571702.html
http://brightlotusmoon.livejournal.com/1565840.html
http://brightlotusmoon.livejournal.com/1565955.html
http://brightlotusmoon.livejournal.com/1555991.html

[Also, I had to save this somewhere...]
brightlotusmoon: (Snow White Ruby Blood Dragon Witch)
I randomly swam through my bedroom closet and found some house slippers and coats. I wish I had waited until my neck and skull muscles had relaxed and loosened enough, but oh well. Winter coats! I almost curled up in the closet for a nap. The thing about OCD (true and evil, not the icky "fake tee hee OCD") is that I know I am insane and that I need to help myself, but the compulsions just keep slamming me down. Which means I need to do this bit by bit. Minute by minute literally. Coat. Purse. Shoe. Matching shoe. Large black trash bag for charity. You know how it is. Even the panic moments. And then the ADD SHINY. I think the biggest bone of contention between me and my spouse is my extreme messiness. I admit it. But oh, that closet is comfy, and I essentially know where things are. After I flop like a child in a ball pit. Stimming! Oh my gods. It's stimming! What. I. Didn't even. Huh.
Should... should I... can I call myself autistic? Officially? Or should I keep calling myself borderline autistic? I don't knoooow. I don't care what people think, that's not the point. The word "hypochondriac" just makes me laugh and wave my hand in a Feh Motion.
Oh, the coats. The sweet comfortable winter coats. And hangers! I found hangers! I shall obsessively put the two things together all over the house, because I spaz ridiculously in winter and the Raynaud's Disease is sheer torture.
I am flapping and hopping from one foot to the other and making "Whee" sounds because I am organizing in a Joanna fashion. Oh my gods, I really am on the spectrum. How did I not know? This changes absolutely nothing on the outside. Inside my mind, though... Wonderland has opened a whole new portal.
So, an autistic friend asked me, "Does the word Autistic feel right? Cuz I sure as shit am not going to tell someone they 'aren't autistic enough' to ID as Autistic. And it's a culture, not just a dx. And I could have written this. Especially the compulsive going through the closet god I have no business doing this my body is saying HA HA FUCK YOU thing."
And I replied, cautiously, "...yeah, the word Autistic feels right. Yeah. And the culture thing also feels right. I think the only reason I've been hesitating is because everyone who knows me knows I already have so many medical issues that this is just one more issue to put on my doctor list - and some people might accuse me of "collecting medical conditions like stamps" to which I take annoyed offense. Not my fault my brain is screwy. I have Things in my brain. It is important to know what All The Things are. I've given up on the closet so far. Like, truly, NOPE. But it is still there, waiting to love me. So yeah."

Yeah, I'm happy. I've had some friends from CP groups, epilepsy groups, autism groups, and fibromyalgia groups inform me that my consistent posting about what I go through is helping them learn more and more about themselves. It turns out that I am becoming a role model. People are thrilled to see that I am so open, honest, willing to reach out and connect and share what I know.

-"You make me feel better when I worry about what is happening to me."
-"I love talking with you because you don't care about all the horrible stuff, you just want to know who I am."
-"Thank you for accepting me and talking to me. You're one of the few online people I feel like I can chat with and not feel rejected."
-"I'm so amazed and impressed by you. You are devastatingly intelligent and beautiful, you never let your disabilities completely overwhelm you, and you are able to reach out and ask for help when things get rough. You inspire me to be a better person."
-"You are so genuine and open. You really want to help people. You don't want to play a character on the internet. You're so refreshing and generous."
-"You have this strength that I've never seen. You can be in insane amounts of pain that would bring any man to his knees and you smile and raise your head and you keep going. You never lie - you say how you feel but you also temper all that pain and hell with beautiful, positive things."
-"You're one of my favorite disability advocates. You're like an idol. You don't hold back. You have almost two dozen medical conditions, and you are happy to talk about them, and you also know when to tone it down. You don't give a fuck when someone is angry at you. I want to do the same thing. Keep being you."
-"I love your power. I love your voice. I love your entire mind. I love how you approach every new medical issue with grace and understanding. I love that you can joke and laugh even when you are sobbing and struggling through the worst of depression and panic. I love that you refuse to project false positivity that you don't let true negativity destroy you. You shine like a beacon in the night. You, as a spiritual being, are extraordinary. You, as a disabled human, are beyond extraordinary."

And here is the funny thing: I do not believe in myself. I do not feel beautiful or inspirational or intelligent or confident. I KNOW all of this. I am very rational. I know, intellectually, that all these things are true. But emotionally, I am shy and scared and worried and upset and not at all confident, and I don't like myself enough to believe. I don't fish for compliments, because on an emotional level I don't want to cry, "Tell me I'm pretty! Tell me I'm awesome!" I know I'm pretty, and I know I'm awesome. But feeling it and believing it is another level of comprehension. You know? You know.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
Oh, hey, my long lost theme song.

http://www.youtube.com/embed/Wmd60Kk9Ljk

Gracefully she's circling higher
She has the wind beneath her wings
And looks down on us, she said

Robbed of my innocence
Had no more time to play
I sure got my feathers burned
But I'm stronger than the flames

Here she comes, here she comes
I've been waiting for so long
Here she comes, rose again from the flames
My little phoenix

Eternity is set in her eyes
Throwing sparks back at the world
That'll never die and I think

She was robbed of her innocence
Had no more time to play
She's only a little girl
But she's stronger than the flames

Here she comes, here she comes
I've been waiting for so long
Here she comes, rose again from the flames
My little phoenix

Here she comes, I've been waiting
For my little phoenix

You've got to get close to the flame
To see what it's made of
You've got to get close to the flame
To see what you are made of

Here she comes, here she comes
I've been waiting for so long
Here she comes, rose again from the flames
My little phoenix

***

This reminds me, fascinatingly, of chronic pain, invisible illness, mental illness, disability, and the struggles of marginalization for a bodymind that is full of monsters.

http://www.youtube.com/embed/yxPMc-XWOZ8

Phantom voices with no words to follow
At the mercy of the cold and hollow
I withdrew into my sanctuary of silence
My defense

In this moment I am just becoming
Liberated from my cell of nothing
No sensation there was only breathing
Overcome oblivion

Falling Awake
From a walking sleep
And all that remains
Is the dying memory
And now I can dive for
These dreams I make
Like I am Falling
I am falling awake

Waves of melodies once forgotten
Like a symphony across the ocean
Never knew that they could hear my calling
Deep within
Crashing in
Rushing in
Like falling

Falling Awake
From a walking sleep
And all that remains
Is the dying memory
And now I can dive for
These dreams I make
Like I am Falling
I am falling awake

There is no returning to that emptiness,
Loneliness
The dream that lives inside of me
Won't fade away, it's wide awake

Falling Awake
From a walking sleep
And all that remains
Is the dying memory
And now I can dive for
These dreams I make
Like I am Falling
I am falling awake

***

And this one, same thing:

http://www.youtube.com/watch?v=vdG3ECUC-mE

Whenever I wake up
I'm lost and always afraid
It's never the same place
I close my eyes to escape
The walls around me

And I drift away
Inside the silence
Overtakes the Pain
In my dreams

I feel Immortal
I am not scared
No, I am not scared
I feel immortal
When I am there
When I am there

Whenever I wake up
The shards of us cut within
Always the same day
Frozen all in the fringe
I surrender to the sleep
And leave the hurt behind me
There's no death to fear
In my dreams

I feel Immortal
I am not scared
No, I am not scared
I feel immortal
When I am there
When I am there

So far or right beside me
So close but they can't find me
Slowly, time forgets me
I'm lonely, only dreaming

I feel Immortal
I am not scared
No, I am not scared
I feel immortal
When I am there
When I am there

***

And for my new friends in disability and invisible illness, I present my number one theme song.

http://www.youtube.com/watch?v=SJnCHctOeJg

Smash glass against the wall
Curse the music on the radio that the neighbours play.
Door slams, she turns her head
Watches through the window as he pulls away
Funny how your racing brain drives you so mad
When all the while you feel so numb
Too old to be clean far too young to be broken
Like an army we come

Cut back, left behind
I watched you self-destructing oh so many times
Shot down, once again
Sitting in a chair crying what am I going to do with my life?
Just learn to hide the way that you really feel
Never let them know that you're scared
But understand that you're not the special only one
Watch us now, watch us real close

How we all dance with this fire 'cause it's all that we know
And as the spotlight turns toward us, we all try our best to show
We are lost we are freaks, we are crippled, we are weak
We are the heirs, we are the true heirs, to all the world

Let's go build a fire down on the empty beach when the waves are crashing high
White heat purify, as the sparks fly up into the great black sky
Sacrifice these crutches to the crackling flames
Stand as silhouettes against the dawn
It's far too late to try to sleep now, seems I'm never tired any more

I want to dance with this fire 'cause it's all that I know
We are lost we are freaks
And we try our best to show
I am lost
I'm a freak ha ha.

***

Depression Monster is still wrapped around me, steel claws and silver grin, but I am fighting and fighting, and I have many spears.

Husband returned from New Orleans around one-thirty this morning. Rose and Jupiter immediately climbed on him and we all fell asleep in a snuggling pile.
Later today, errands! Petco Unleashed with coupons for Blue food and litter. Trader Joe's for cookies, whole milk yogurt, chocolate hemp powder, trail mix, pumpkin cereal bars, fairytale pumpkins. Dollar Store for calendars. H-Mart for produce and foods from outside North America.
Had a lovely chat near the with from a guy who was from Jamaica, who extolled the virtues of awesome iron-rich burro bananas and said that his grandmother, who ate them every day on The Island, was 130. She probably did lots of things. The man himself looked barely 40 but he could have been 50. I asked him which bunches of burro bananas looked best. Yay, snacks.
And we got a pure honey nut spread, roasted seaweed snack packs, tamarind paste, demerara sugar (4 lbs for under 5 bucks), black plums, pomegranates, red leaf lettuce, and stuff I forget now.
I have taken more medication to ease this pain, I have meditated with cartoon comedy to beat back the Depression Monster, and I now will get back to writing.
brightlotusmoon: (Pixie Model 1)
I just realized that I haven't posted in a while, not here. Busy, I guess, reading all those books I haven't read. Damn Kindle devices and all that. Over the weekend, my college best friends came for a visit, the first time since 2001, and it was fantastic. In DC, at the the Smithsonian Museum of American History, I got a wheelchair from security, and Tish and Rin were happy to push me around. The Spy Museum, The Cooking exhibit, the Golden Books exhibit, even the gift shop (at which I bought a Military Space Pen and a copy of The Shy Little Kitten from Little Golden Books, and also a stainless steel water bottle with ninjas on, and a coffee tumbler with kisses and femme fatale quotes on).

Rin taught me about cold-brew coffee, and now I am all about it. Yesterday, I left the French Press brewing from seven at night to eleven in the morning, and today I set it up at seven again... I will probably let it sit until ten or eleven tomorrow morning. I am still astounded by the smoothness, the lack of acidity. It still needs chocolate and sugar (cocoa, maple syrup or honey or palm sugar, cream or whole milk) but I am extremely impressed. Cold brewing overnight in a French press, for around 15 hours or so, makes me happy. And when husband wants his hot coffee, we can empty the press and refill it with boiled water over more grounds - or he can use the espresso maker. Lovely.

Coffee is great! Coffee is great! Coffee Coffee Coffee Coffee Coffee... -ahem. Sorry, that was Bender with Fry in the background.

We went shopping, as well, and at Sephora in Chevy Chase I purchased my new currently favorite red lipstick: BareEscentuals BareMinerals Marvelous Moxie Lipstick in "Call the Shots" - the website called it a 'rich scarlet' and it really is. A lovely dark pomegranate neutral red. The formula contains many moisturizing oils and peptides, which of course always matters. Call The Shots is very similar to my beloved BareEscentuals Buxom Full Bodied Lipstick in Provocateur, a true red with pink tones, but the Moxie lipstick has less pink.

We ate Belgian waffles with cream and strawberries, washed down with strong lattes. At home, my cats loved them constantly. When they left on Monday morning, I had happy tears in my eyes.

A migraine plus a tension headache and sinus pressure has been slamming into me since Monday. Today, at my pain specialist appointment, when I told the nurse about it, she grinned and said, "So, everything is fine and normal, huh?" and we laughed.

Ah, my head.
brightlotusmoon: (Snow White Blood Red Light Pale)
I must quote this, because it struck me deeply and knocked me over and stunned me and amazed me.

*****
From: [livejournal.com profile] naamah_darling.
I don't know if I can explain it, any more than I can explain why I find anyone amazing, but you're open about what you are and what you are going through. You don't expend energy trying to be normal, and you never seem to even want to. You aren't afraid of what you ARE, even when the things that HAPPEN, sometimes because of things that you are, are scary. You seem sometimes scared of things that happen or that you (body/chemistry) do to you, but not scared of yourself, really. You're fierce. You're . . . we don't have a word for it. The way in which children and animals are alike, that we *call* innocence, but isn't innocence, it's just a kind of transparency and guilelessness-without-cluelessness. You're contradictory, and this isn't a problem. You've imposed . . . not order . . . but some sort of reason and meaning and story on the chaos in your life, and you have made beautiful things out of it inside you. You persist. You change, you are not destroyed. You're mercurial, joyful in the sense of being flat-out at everything you feel and not in the sense of being always happy, you're generous, you're very kind, you're forgiving. You aren't afraid to spend a lot of time working with and understanding yourself, because you know that is important. You are more people than just-the-one-you you. You are comfortable working with shape and meaning and color, when words aren't good enough. Whole parts of you are indescribable. You're a *good person*, while still being strong and fierce, and that is overwhelmingly obvious to anyone with half a synapse. You belong in fairy tales, like so many of the rest of us, writing better endings. You're kind of amazing.

And tangentially, THAT is why when people are all like "disabled people are so inspirational!" I get kinda pissed on the grounds of "THESE PEOPLE THAT I KNOW, they are SO MUCH MORE than a stepping stone for your ego or a friendly reassurance that hey, if those people can manage to get themselves to a beach/a gym/on a horse, you have a good chance of not being an utter asshole failure your entire life, and accomplishing REALLY important things!" and at the same time am like "No, really, we ARE inspirational; you have no fucking idea how 'inspirational' the disabled folks I know are . . . and if you had one iota of their self-awareness you might not be saying such asinine crap."
You want to find disabled people "inspirational?" I'll accept that . . . if what you are finding "inspirational" is their honesty in speaking out and sharing their opinions, their desire to help others, their weapons-grade swearing vocabulary (so many disabled people I know HAVE THAT, it's glorious), their ability to incorporate something literally disabling into their self-image and life when our culture gives them limited scripts and limited opportunities, their persistence in navigating the obstacles placed in front of them not by what they are, but by how our culture and the many dickheads in it unwittingly and often VERY DELIBERATELY make it harder to do so, the fact that they are often poor as dirt but are the most generous people you will ever meet, that they have known pain and so they often know great compassion.

*THAT* SHIT IS INSPIRATIONAL.

So is persistence, yes, which is why I am always impressed when I see someone who has had to deal with major issues accomplish something that is made particularly difficult BY those issues SPECIFICALLY, but when that sort of thing is nearly always ONLY praised in the context of visible, physical disability, or when it's some completely unrelated shit, that pisses me off.

It's like . . . people are apparently impressed by when disabled people do anything *while smiling*, because that indicates the triumph of overcoming our miserable existence? Or that we have a good enough attitude to forget, for a moment, that we are fucked up and are supposed to be miserable constantly? I don't even KNOW. But these same people aren't finding me inspirational when I'm at my blackest and am hanging on by my last claw, which is arguably when I am being my MOST BADASS. That's when I need to be pulling up my bootstraps and thinking my way out of it with sunshine and baby kisses. But an ungroomed, exhausted, surrounded by laundry, not moving, fat, blotchy, cat-strewn DEPRESSED person staring at a computer screen or TV or at nothing in particular doesn't look good in a facebook picture. "This person: probably exercising more willpower not to give up hope and eat a bullet than you will exercise at any point in your whole life. Stop. Bitching. That. Your. Yoga. Is. Hard." <---- Nobody wants that. (And, while maybe sometimes true, it's also kinda dickly, because Suck Olympics are uncool. The things that have made me most miserable sometimes do not seem to be proportional or make sense. To wit, the hour-long crying jag I had when my last pet scorpion died, years ago. Dude, I cried less painfully when my GRANDMOTHER died. What even the HELL?)

All I know is that the shit people usually talk about as being inspirational is not really very inspirational to me. Like, *if* it's true that Chris Evans really does have anxiety/panic attacks (never read reliable info about how severe his "problems with anxiety" are, though he apparently went into therapy) and he still navigated two MONSTROUS blockbuster movies and associated press events, I find that totally fucking impressive, because I KNOW WHAT THAT IS LIKE, and I know I couldn't handle it. And that's the stuff people don't seem to understand. That's the stuff people latch on to and *make fun of.* Because people who don't Get It can be real dicks about that stuff.
*****
I truly believe that if Namaah and I lived closer, we would see each other several times a week and never get tired of each other's company.
My husband once told me that everyone has multiple soulmates, that a soul can be split into many different parts. I think Namaah may be one of my soulmates. It took me five years to realize that, and that's okay. I like to take things slowly.
brightlotusmoon: (Snow White Blood Red Light Pale)
Okay, guys, who wants artwork of anything, anything at all, for a sale price? My friend Chris Quillan is offering:

"For a limited time, I'm doing art commissions for $75, no matter how complicated the piece is. I usually charge $100-$500. We need to make a few hundred dollars by the beginning of July, and I figured this was our best shot. Drop me a message if you're interested."
http://chrisquillin.deviantart.com/
(chrisrquillin@hotmail.com)

Even if you can't afford it right now, please pass it along!

Example: A simple portrait of my cat, Luna, using a photo as reference. And this doesn't even scrape the surface of Chris' skill, mind you.

LunabyChrisQuillan

Chris works with several different mediums, by the way. He and his fiancee, Kate, are dear dear friends of mine, full time artists and writers, and major animal lovers with two Norwegian Forest cats, one giant, one tiny, both from the same litter, and we're still not sure how that happened. It's the awesomeness of cats, I guess.

Lights.

Jun. 8th, 2013 10:03 pm
brightlotusmoon: (Snow White Blood Red Light Pale)
The thing about brains is... brains are so complicated. Brains are so complex. Brains need outlets, too. Words are good enough for my brain. I just want to feel safe when I say words out loud. All I've wanted to do was help people. To say, in public, loudly, "You have someone who will listen. You have someone who understands. You have someone who knows what it means. You have someone who will hold you through the worst of the darkness. You have someone who will always shine brighter than any light." Ever since I was a teenager, I was told that I radiated a pure sort of light that drew other minds close. And every time someone who has never seen that light tells me that I'm causing upset or wrongness, that light falters, because how could someone slap me across the face just because I want to speak out through the darkness? I will never stop speaking out through the darkness. I don't care what it costs anymore. I will talk about my brain and its ultimate complications and complexities and sicknesses and handicaps, and somewhere, someone will always be listening. And they will talk about their brains, and we will share our stories, because that is how stories begin.
"Once upon a time, there was a warrior princess born with invisible armor to battle all the damage inside her that would follow her for the rest of her life. For a long long time, there was nobody she could talk to who truly understood. And then, suddenly, there were dozens of people who could understand. And the warrior made it a mission to talk to them all and keep talking. She kept talking even as others misunderstood her, scorned her, and scolded her, since they didn't realize that what she was doing was baring her life wide open, so anyone drawn to her light could share their lives too. She was told, 'Stop putting yourself out there. Stop talking so much about what's wrong with you. Stop focusing on the negative.' And she looked at them, finally, and said, 'No.' Because there was nothing negative. There was no wrongness. There was only her life. And her life was only positive and right. There was laughter, and amusement, and silly things, because even as the pain overwhelmed her, she would keep going, keep laughing. She told stories to those who wanted to listen. She helped many people learn about themselves. She became a teacher, an advocate, a true light in the darkness. She became strong and brave because she had to. And she will have stories to tell for the rest of her life."

bluedarklotus

dragongirlsky

auroradragon

I admit, I got a little choked up while writing this. Maybe I do feel much more defensive and upset and naked to criticism than I thought. I'm really, really trying to work on letting all that go. It certainly doesn't help my mental health.
brightlotusmoon: (Snow White Blood Red Light Pale)
http://ursulav.livejournal.com/1541152.html

And as I look into the faces of my cats and as I struggle to imagine my world without them... Oh, I can't finish.
Be loving. Be kind. If it takes magical thinking, do it.

Some time ago, an old acquaintance was attacked via a friend's Facebook post, because the acquaintance wrote a poem about the Boston marathon bomber, questioning the killer's motives, expressing sadness and confusion. The friend had lost her cousin, who was one of the three initial casualties, and was very raw and full of grief and ready to lash out at anything. I don't think she even read the poem - in fact, the only reason the poem got her attention was because it was reported on Fox News and spun as "a love poem to the bomber" when it clearly was not... and my friend, normally gentle and kind, flew into a wild howling rage directed solely toward the poet. I thought it was unnecessary and inappropriate, as I knew the poet and knew her mind. My friend probably never read the poem and thus never realized that the poem was never truly about the bomber and not in any positive or supportive light.
But then I realized that people will have knee jerk reactions to everything without seeking any truth, and I let it go. I let it all go and I became Zen, and I realized that this was humanity, full of emotional power and extremity. And all I could do was handle my own emotional reactions. Even during episodes of mental illness, even during times of grief... it belonged to me and nobody else. And I promised myself that I would not get involved in angry disputes unless I saw someone I knew being blatantly attacked, and then I would merely step in, say good things about the assaulted person, and back away. It is all I can do. If I myself am attacked for my sympathy, it is not on me, and the immaturity of the attackers is not my issue to deal with.
I have realized over the months and years that I cannot do much for anyone who wants to believe specific things that might hurt other people. "This person is horrible because they said this thing I disagree with" or "I hate this person because they are affiliated with that person" or "All these people are the same, and I don't care about the people on the edge of the group who don't share the main beliefs of the group because they still affiliate themselves with the group." Painting entire groups with a single brush is one of my pet peeves, anyway.

I will stop now. I've run out of words there. It doesn't matter.

I have too many books to read, so I'll just keep going with the one I'm in the middle of right now...
brightlotusmoon: (Snow White Blood Red Dragon Witch)
http://naamah-darling.livejournal.com/623299.html
Seriously, you guys. Seriously. *points* This woman. This woman is awesome. She is AMAZING. All her custom ponies are amazing; they are fantastic, they are extraordinary.
But I think she and I can both say with total confident honesty that Serenity is the best. (Okay, the best so far. But still.) And Serenity belongs to ME, because this woman made her JUST FOR ME. As a special gift.
And she knew she was doing it even before I told her I was considering requesting a custom since they are pricey and I wanted to save up money. And there she was smirking and giggling smugly because I had no idea, and then I got Serenity in the mail and I cried and sobbed so hard because the happiness and joy was overwhelming.
And now Serenity is literally imbued with my magic, and I love her more than any toy I have received in my adult life...
And seriously, people, you should seriously consider Namaah's ponies. She is absolutely incredible.
But Serenity is still the best. Truth. *nods*
https://www.facebook.com/media/set/?set=a.10151406320840684.1073741827.640545683&type=1

And still, whenever I feel anxious and upset and depressed, I just touch the lotus bud symbol on her forehead, and I actually honestly feel better.

Edited to add:

Serenity the pony called to me, so decided to take a photo to show how much I adore her.

I have not loved a toy so much since I was a teenager. I cannot thank [livejournal.com profile] naamah_darling enough for creating and naming this pony just for me. This may be one of the most perfect toy gifts I have gotten in my adult life.

Serenity has been charged and imbued with as much personal magic energies as I could give her. She is now a method of helping me work with physical, emotional, and psychic self stimming in a weird way.
I talk to her during episodes of anxiety and depression; I kiss the lotus bud blaze on her forehead when I say goodnight. I brush her hair with wood combs and boar brushes. It relaxes me.

She soothes my brain and centers my mind in ways I cannot explain. She is a toy, custom made... but she is special beyond description.





It doesn't matter how old or young you are. There will always be some sort of toy or physical object that represents something important, something life-like or abstract or surreal, that you bond to deeply.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
So, a couple of months ago, I was chatting with [livejournal.com profile] naamah_darling about her fabulous custom made My Little Pony dolls, which she paints herself with her own designs and even new hair. She sells them on Ebay for reasonably understandably high prices, because they are really extraordinary and unique.
I casually mentioned that one day, when I could afford it, I'd love a custom pony for myself. The matter was dropped.
And then a week or so ago, on Facebook, Naamah mentioned on Facebook that she was sending me a package. Since I've been sending her care packages full of skin care and supplements, I figured it was something similar, like a thank you. I didn't realize how anxious and excited she seemed about my receiving the package.

A couple of days ago, the box arrived. I opened it up and found the card first, with a glittery dragonfly on the cover. I opened it and on the left it read:

"Funny you should talk about a custom..."
And my heart kind of skipped.
And on the right it read:
"It took me a while to figure out her name, but it turned out to be so simple once she told me.
Serenity.
I made her thinking of you start to finish. She's all yours. She'll be a friend who can always be there for you and remind you that you are never alone.
Hope you love her. <3"

And even before I pulled away the paper wrappings, I was crying. And when I had the pony in my hands, and I saw her flank symbol, I cried even harder, murmuring "Oh my gods, oh my gods, she did this for me, she made this for me, oh my gods, this is amazing, this is so beautiful, oh oh oh..."

Because I had seen a photo, on Naamah's Livejournal, months ago, of this pony being painted, and I had instantly been pulled toward it, wishing it could be mine...
And here she is.
Meet Serenity.
https://www.facebook.com/media/set/?set=a.10151406320840684.1073741827.640545683&type=1

Every morning, I look directly at her when I wake up, and she makes me smile. It is a wonderful, beautiful thing. Honestly, I don't think I can express it in words. Just... incredible. Love you, Naamah.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
Especially for [livejournal.com profile] naamah_darling

Here is a post for questions about my Healthy Multiplicity, and the three (now potentially four) female people/entities who inhabit my brain and help me cope with all my various vast disabilities and illnesses.
This is also a post for others to discuss their own.

-Serena: The first known guide, who guides me through all and every pain, tension, emotion, and fear, who is my inner nurse.
-Alicia: The second known guide, who guides me through epilepsy and postictal states, who is my inner mage.
-Amara: The mysterious third guide with me from birth, only recently human, who guides me through overall brain damages, memory problems, cracks in the walls, neuronal crumbling.
-Amber: the previously silent, hidden fourth guide who acts as a preserver of my sanity, who seems to catch me when I fall so deeply I fear entrapment, who deflects darker energies and turns negative into positive.

Disclaimer: This is not a case of DID, which is a very, very specific disorder. My girls do not leave my mind to use my body and voice, although there have been very rare postictal states in which Serena has spoken through me when I was fully incapacitated; however, I was still myself, just unable to articulate until she lent her voice.
Healthy Multiplicity is extremely common in perfectly healthy people. It is often seen as a form of coping mechanism for many disabled people, who need to sometimes retreat into their creative minds to preserve themselves, to soothe their mental conditions, to know that they are able and capable and strong. Because sometimes, being reassured by loved ones falls hollow, and you know your own mind well enough, and your own mind knows you well enough.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
I did not write this. I just shared it.

***

Originally posted by [livejournal.com profile] naamah_darling at NIMH does the smart thing, ditches the DSM
The National Institute of Mental Health is abandoning the DSM.

This is potentially monumental, and I've seen very little mention of it anywhere. Partly, I think, because people don't really grok how big a deal this is.

This is a very good thing, and for those who don't grasp why, I will try to explain. (Though the link does a really great job of it, so really, you can just go read it.)

The Diagnostic and Statistical Manual of Mental Disorders (DSM) is a big-ass book released by the American Psychiatric Association that provides a standard method of categorization for mental illnesses based on related symptoms. Like a dictionary, it has given doctors, psychiatrists, and other medical professionals a common vocabulary with which to describe and define mental illness, so they are using the same terms in more or less the same ways, and arriving at consistent (even if they are sometimes inaccurate) diagnoses. It has been revised several times since the first edition in 1952, and has been released in four, soon to be five, major versions.

It has been a useful tool, but it is now insufficient. Over and above the fact that it has always and still does pathologize certain normal, healthy behaviors, which I won't go into here, it relies on a primarily medical definition of mental illness. It does not place a diagnosis in context with the patient's environment or upbringing, etc., or even with their experience of their symptoms.*

That would perhaps be tolerable, but . . . the DSM does this by relying on a purely symptomatic mode of classification, without taking into account underlying neurological/biological causes – different things may cause similar symptoms. So, it reduces mental illness to medical causes . . . but doesn't then require there to be a common cause. Disorders are defined by symptom clusters, and not by actual, you know, hard data about neurotransmitters, brain activity, and so forth.

To liken it to something more familiar, chest pain might be caused by blocked blood vessels in the heart, or might be caused by acid reflux. If we were working by the DSM model of diagnosis via symptomatic classification, they would both be the same, yet I am sure every single person reading this understands that a heart attack and heartburn are not at all the same thing. Classifying them under the same category and treating them the same would be disastrous. (The linked article uses the exact same example, yes. Because it's perfect.)

The more we learn about mental illness, the more we learn that it is a tremendously complicated thing. What seems to be one category of illness (depression) can actually be two or more conditions which appear similar but stem from very different biological causes. Depression might be caused by a lack of serotonin. It might be caused by a lack of dopamine. It might be caused by a thyroid imbalance. There is more than one chemical irregularity responsible for the set of symptoms we call "depression."

As an example from my actual life, until recently, bipolar disorder was not divided into bipolar I and bipolar II. There was just bipolar I, which is the classic "manic-depression" that everyone's probably heard of. You didn't get classified as bipolar unless you had manic states. Because this automatically excluded people whose bipolar disorder skewed toward the depressive side and seldom or never ticked into the manic, or excluded people who didn't recognize mania for what it was, bipolar II was often diagnosed as unipolar depression.

When you treat bipolar II like unipolar depression, you can get a very sick and possibly dead bipolar II person. At the very least, you get a person who doesn't get better, because bipolar disorder does not just go away. SSRI drugs, often the first line of defense against depression, usually do not work on bipolar depression. You can see why this sucks.

This mistake is part of why my mother was never diagnosed properly, and why her depression was never managed. She suffered needlessly because of it. For a long time, I did, too. There are ugly real-world consequences to the symptoms-only approach. Not just human suffering, but jacking up data that could have led to better treatments.

Imagine all the bipolar II people who were thought to be depressed who were doubtless included in data collections, in experiments, altering the results. SSRIs don't work on bipolar people, but bipolar II people totally made it into SSRI testing. We can't know what kind of effect this has had. We can know that it isn't good. It's not leading to better drugs. It's not leading to better treatment. It's leading to mistakes. It's leading us to ditch treatments that only work on 10% of people with a particular symptom, when those 10% are mostly people with a totally different underlying condition. That treatment, applied only to the people with that condition, might be 60% effective or more. We have lost opportunities because of this. It is a certainty.

Back in the dark ages, we went at everything symptomatically because we had no way to understand what was happening inside us. We thought that fevers were caused by poisonous emanations from the earth, or evil spirits. Medical treatment was often "bleed more, poop more, puke more, one of those will make you feel better." Well, now we understand things a lot more thoroughly, and we acknowledge that treating the root cause of a thing is better than going after the symptoms and not resolving the issue. Why address lethargy, weight gain, depression, constipation, high cholesterol, and infertility with who knows how many drugs and treatments when you could just treat a simple thyroid hormone deficiency with one very cheap and easy to obtain drug?

This approach has not really spread to mental health yet. Frankly, that's because we do not yet understand the causes well enough to treat them. Without understanding the causes, something like the DSM has some value, diagnostically. It gives us something to go on, and its not completely horrible or inaccurate or anything, just inadequate and far too broad. Clinging to it is unjustifiable.

NIMH's new protocol, the Research Domain Criteria project, or RDoC, is not a new classification system, it will be the framework for gathering data to fill in the gaping holes in our understanding of how mental illness actually works.

Essentially, NIMH, which carries out a great deal of very important mental health information-gathering and research, is jettisoning the DSM as a classification system for purposes of that information-gathering and research. Currently, the DSM classifications are used when researching mental illness, which biases results inherently in favor of those classifications.

It is not going to transform what doctors do and how they treat mental illness starting tomorrow. What it will do is lead us to a better understanding of mental illness, and over time that will lead to radically better treatment.

This is a big step forward for mental health research. In my opinion, we will start seeing results surprisingly soon, as the first waves of research yield more accurate information. There is so much we don't know that increasing the data set even a little bit is going to improve things.

I'm excited about this. I look forward to seeing what new things we learn.

(The fact that NIMH's announcement comes only a few weeks before the DSM-5 is released amuses me.)

* Example: I "hear voices." Also, I am sometimes other people, a little bit. The DSM doesn't acknowledge those things as a deliberately and carefully cultivated coping mechanism, only as a bad thing indicative of other bad things. In context, it is healthy. In the book, it's pathological. Regardless, it's a sanity-saver, and one I continually seek to reinforce. Doesn't matter how it looks on paper. Say hello to the boys. They keep me safe.

X-posted from Dreamwidth. Comment count: comment count unavailable
brightlotusmoon: (Snow White Blood Red Dragon Witch)
Okay, seizure.
Happened during cleaning - and cleansing.
Charlotte was over to help clean up my work room.
I sensed it happening and went to the couch.
My body went rigid, flailed and danced a bit, curled in on itself. Alicia was behind my eyes, whispering. Serena was at the corners of my vision, smiling. I trembled, let loose with a string of curse words, woke up hard.
When Charlotte came back in, we used magic and essential power to help calm my brain. I sprayed myself and the corners of the room with my favorite perfume, Inspiration by iiTawk (http://www.theskinrevolution.com/_iiitawk.html). It helped reset and refocus my temporal lobes.
We are still working, moving to Channel 404 Dance/Electronica.
Alicia's forest had been full of shades of purple, blue and green.
In this postictal state, I shall dance the hell out of myself.
I am made of magic, you know.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
My response to someone in a forum:

"I'm truly not sure how to guide somebody into disability advocacy. I literally just fell into it after venturing into forum after forum with varying and conflicting views. I wanted to let my voice be heard. I use Facebook for that. I am learning what to talk about and what to keep private. Really, all I do is... talk. I just talk. I talk about my symptoms. How my illnesses and injuries affect me. How I work alongside my disabilities. How I distract myself and focus on other things beyond the pain until I get struck with the Sledgehammer of Pain Attention (there's a pun in there somewhere). I am always fascinated and intrigued when people come to me asking for advice - or if not advice, at least how I keep going. So if you want to be a disability advocate yourself, my first suggestion is to just start talking. Blogs. Facebook. Twitter. I dunno. (I don't use Twitter.) But you get the idea. Someone will start listening to you. It's pretty awesome when a bunch of people start coming to you with their own stories and questions. I really have no idea what I'm doing; I just go by my instincts."

Also:

Oh wow, you guys, I actually applied a screen protector all by myself. I even got most of the air bubbles out; the ones that remain are too tiny for me to care, but if someone else wants to help smooth them out, that's cool. I'm kind of proud of myself. My motor coordination has improved slightly since today's Reiki acupressure massage anyway. Since the protector has a matte feel, I enjoy using it more than the bare screen. Turns out that my SPD, OCD, and hypersensitivity really do prefer a protector for my phones regardless of necessity.
http://www.ebay.com/itm/150944057835

Also:

Fantastic, wonderful day of walking. Montgomery Mall. I wound up treating myself to two of the best bras I have ever tried - ever. The store Soma was having a half-off sale. It was very worth it. Charlotte bought a lovely outfit, I found Java Mocha Monster, I got an incredible twenty minute massage by a certified acupressure Reiki expert, I bought a lipstick at Sephora for many dollars off, and we walked. We walked so much. Wonderful walking. At the end, hideously painful and screaming. However, I have learned how to distract, focus on everything else, and pay no attention, and so everything was awesome. Now the pain is smacking me in the face with a hammer so I have to deal with it. But oh, it was worth it. Montgomery Mall is pricey, but beautiful to walk through. Also, I absorbed the Reiki energy from my masseuse and let it flow all over me. My body and muscles feel so calm and loose. I feel quite "Hey guys, chill out, it's all good, just relax" right now. Unfortunately I needed clonazepam to avoid one anxiety attack that struck too suddenly, but life happens a lot. That's just life
This is the style of bra I got, half off.
http://www.soma.com/store/browse/product.jsp?maxRec=14&pageId=1&viewAll&productId=1570010565&prd=Ravishing+Push+Up
brightlotusmoon: (Snow White Blood Red Dragon Witch)
So, as my Facebook friends have learned, I am dealing with a literal "nervous loss of appetite" - literal in that my biochemistry and brain chemistry is so fucked up that my hormones and neurotransmitters don't remember what actual hunger and appetite feel like (hunger and appetite are not the same, also).

See, when I had anorexia nervosa as a disease, it was always, "I don't want to eat"- and "I don't want to be fat" was an afterthought. The same thing is happening. Now the afterthought is "Well, I wouldn't mind losing ten pounds, it couldn't hurt, right?" And oh, dear ones, that is not a good thing.

So, the goal now is to teach my brain and my body to accept solid foods in the mornings, without my brain screaming about how weird it feels and without my stomach wanting to make it go away. And here is the thing: I have not lost much weight. According to my special scale, I lost maybe two to three pounds and my body fat percentage dipped a couple of numbers. Not a big deal, right? Right? Ha ha, silly, nope.
My doctors have been informed. They have been guiding me, nutritionally. I have several friends who are actively studying nutritional science and they have been guiding me.
If I can eat only half the sandwich, I will eat only half the sandwich, and I will save the other half for a couple of hours later. In the mornings, instead of taking my medications with coffee with cream and milk, I will actively make cereal, oatmeal, a nut butter/fruit preserve sandwich, eat as much as I can, and then take my pills. Yogurt is not really considered solid food, although my brain totally thinks it is. My body adores dairy and doesn't give a fuck what anyone thinks. Cheese, whole milk, full fat yogurt, bring it on. Also fruit. My fruit cravings have been wild. Now, I've been told to watch out for sugar, because "it is possible that all those cravings are for the sugar in the foods and not the actual foods" - on which I quickly called bullshit. My sweet tooth hasn't been very active. Certain fruits and naturally sugary foods taste much too sweet. I can barely handle ice cream these days, filling as it is - although frozen yogurt with fruit is tolerable. Of course, there is a chance they are right - everything is possible, probable, and plausible. But at this point, I just need to eat something. And if there is a slice of cheesecake available, I will take a few bites just to start the whole "hey, time to wake up the digestive process" thing.

So, I welcome anecdotes and experiences and even suggestions. But I don't wanna be policed, if you know what I mean. Like if a morbidly obese celebrity or a very very skinny celebrity gets targeted by a gossip community and everyone says, "Well, I'm just *concerned about her health*" and then nobody produces their medical degrees or doctorates, is what I'm saying.

I love food. I am sad. I want food in my belly and I don't want my body hormones and brain chemicals getting in the way. And above all I don't wanna start thinking that I'm going to be fat, because that means The Worm will come back, and The Worm is evil and will rip open all those scars like paper.

So, I love you guys, and if you want to say anything, go for it. Just try not to be The Health Police. I mean, unless you actually have a degree in science, medicine, health, nutrition, etc. - or you are at least studying
that sort of thing. If so, by all means, instruct me! <3

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brightlotusmoon

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