brightlotusmoon: (Asha)

I have been snacking on whole fresh mozzarella cheese, salami slices, and roasted almonds, along with apple slice smeared with cashew butter. Good stuff. When Adam comes home from work, we'll eat the eggplant parmigiano that has been soaking for two days.

In the medical science community, there is a slow push to make chronic fatigue syndrome an actual disease as well as fibromyalgia. This may at least help them take us more seriously.
All I know is that Cymbalta is doing lovely things, surprisingly. After adding Rhodiola Rosea and Garcinia Cambogia, which gently boost dopamine and serotonin, I feel better. Still in a depression episode, still having anxiety blackouts and transient global amnesiac episodes. Buuut it's better. It doesn't seem any bettet since it all began in 2011. But I can feel things happening. It's all qualia anyway. All subjective.  I can never tell anyone to be me anyway.

brightlotusmoon: (Asha)
So, my thoughts have been spinning merrily amidst what could be a spiraling episode of... Oh, fuck, probably everything at once. After I had a chat with three doctors about the consequences of stress-related memory loss, I quietly decided to start a private mindfulness therapy, which I have only been sharing with the psychologist, for advice, while I move forward in my own brain to stop my own brain from destroying my mindstate.

Tomorrow, I see my general physician and have her write a referral for the local hyperbaric oxygen therapy center. Although it's a bit premature, as they have yet to call me back about an initial consultation. While I was filling out their online New Patient form, I started wondering if they would even take someone like me, with two dozen illness. Even though cerebral palsy is the cornerstone. I just feel so excited about it. That's a good thing. I can still most of my emotion things.

What I find beautiful and fascinating about my private therapy protocol is that almost nobody believes me. I have been stuck in something insane since 2010. Why would they believe I would "get better" now, so many years later after therapy and medications and meditative exercises? Then again, none of them have been in long term therapy or medication. It really does take many years to spur a change this massive. Hence the secret protocol, which includes a possible medication update and potential oxygen therapy.

I don't expect anyone to believe me. I don't expect anyone to believe in my desire to change with this therapy protocol. How could they? Why would they? I am the same as I was when symptoms started. But I don't want their belief. I don't really want support if there is no actual active knowledge. How can you say "Hey, I've been there, I get it, fist bump in solidarity" unless you really have gone through a similar structure of treatment repeatedly for a grab bag of illnesses that mindfuck you for no reason?
Actual legitimate question, BTW.
If you're also a parent of someone with interconnected psychiatric and neurological disorders, I would love input, because when I try to explain these things to my mom who only has hereditary ADHD controlled via lifestyle, my emotion-brain starts shutting down so my technical-brain can word at her, and I know she wants less science and more human. I'm trying. I just cannot get past that very protective mental guardian who shields emotion-Joanna from Outside. And oh, as much as I love Serena, she feels it is easier and gentler to let me sleep while she and Koan the calico kitten organize and compartmentalize all the Me. Ananta works hard enough balancing out all the neuroweird that Alicia in my private epileptic Wonderland can't reach. I haven't had much success in psychically merging with Asha. We are working out my dissociative and depersonalization episodes first.

I will do this. It will happen. Steps have been severely taken. Hard to talk. But if you think you get it, I would love a discussion via Private Message. I am willing to reveal bits and pieces of my Rebuild Joanna Brain Project to acquire tips and advice from those who get it.

Now, see, I view many people as family beyond my blood family - who shall remain the besy family I would want. Various people in my social circle - friends plus family - have always stood with me. I will always need and want that. But for those who are truly normal and looking at me with confusion, puzzlement, exasperation, fear, anger... and the type of condesencing that means pats on the head, chuckling, and "I love you sweetie. Of course you'll change." "You do nothing. You never help. You are too self absorbed, you don't think, you claim memory loss. It is all right, dear. We are used to hit. Just finish writing." Followed by another hair tousle. I'm used to it. It's routine because I am me.
I am not out to prove them wrong, not entirely. I am out to prove to myself that my neuroplasticity really might eradicate the worst of the annoying symptoms.
Maybe this whole autistic ramble came from my hope and excitement over this slow gentle therapeutic process. If loved ones want me to speed it up, I can turn away for a while to meditate.

All I know is that my own husband has been putting up with me forever, and that says something huge.

Love you, LJ family.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch)
Seizure happened in the kitchen. Jupiter meowed and rubbed against me while I crouched. Adam came in and gently lay me on the floor. My eyes were open and blank. Adam touched my face and reached for my mind, and I spasmed and gasped and blinked. I asked why I was on the floor. Adam helped me up and stood me against the large freezer. My memory is swirling. Alicia is holding me. Earlier, Adam said he told his boss, a fellow animal lover, that he needed an extra day to care for his wife. I rolled my eyes and said that was not necessary; that I was fine. Never mind. It was so dark and so white equally braided as order and chaos magics. I was spinning at ninety-nine percent light speed and thirty-five miles an hour. The world was elsewhere. A few seconds lasted a thousand years. Adam suggested I go upstairs and rest. Jupiter is suggesting a cuddle. I am thinking coffee and clonazepam and baclofen. I am made of light and love and pure order-chaos magic in its simplest form. I can give myself the right strength. May be that I can regenerate. As brightly and intensely as a Time Lord. I always shine enough for everyone.

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)
Why is it that, in most dreams where I am in physical danger, I am unable to scream or move quickly?
My last dream involved a bad fall and crash at the top of the stairs, while a large group of people were downstairs having a small quiet party. Something supernatural was with me, something insidious. I grabbed the stair ledge and pulled myself up to a kneeling position. I yelled my husband's name, but it was only a whisper. I couldn't call for help, not with the shadowy creature surrounding me. I was moving so slowly. It felt as though nobody was in the house but me, me and the cats.
And abruptly, I realized that nobody was in the house. Adam was at work. There was no party. The cats were all downstairs. It was only me and the shadow entity. I struggled to call on my internal resources, my spirit guardians, but even my psychic voice was muffled. I was not afraid. I was determined. I was badly injured, and I only had myself, and my powers to create weapons and defenses were drained. I stopped trying to stand. I knelt there and mouthed words, calling on the water in the bathroom, the air circulating around the house, the earth under the house, the fire downstairs used to light the gas stove. I pulled in all into me, and with a desperate burst, I unleashed it. The shadow creature shrieked and vanished.
Without any warning at all, the house filled with presence again. There was that quiet downstairs party. I whispered my husband's name again, struggling to turn it into a cry. Someone must have heard. Adam came up the stairs and found me, sagging against the door of the bathroom, my nose bleeding. He spoke to me. He half-carried me to the bedroom and helped me lie down. He brought damp towels and tissues and water with electrolytes. I managed, somehow, to tell him that a negative spirit had entered the house and stole my strength, and I pulled all the elemental power I could to drive it away. He was very proud but also puzzled, since the house was supposed to be powerfully shielded and guarded. I was crying but I didn't mean to cry. It was just a reaction without intention. He stroked my hair and curled up with me, and me took my hand and fed me energy and power and strength, and he said, "Go to sleep, my darling. I'll be monitoring you through our psychic bond and everything will be okay. I will strengthen the wards." He needed to check on our friends. He would back be up soon.
The dream ended there.

It has been something of a recurring thing: My slowness in dreams. My exquisite agony in dreams. My whispering words in dreams. Sometimes I can barely walk for the pain in my hips and knees. Sometimes I can only speak with thoughts instead of physical words. Sometimes my body is wrapped in a floating translucent shell and it is the only way I can move. In my dreams, the pain is so much worse than in reality. But I have access to weapons of all kind and I feel safe, even if something horrible grabs me.

When I was a child, I had flying dreams every night. Even astral projection. Like my father and cousins in their younger years. And if a harmful person appeared, I just waved my right hand fiercely, shouting "Shoo! Shoo!" to make then disappear.

When I was a child, I dreamed of dragons, of ancient tortoises, of unicorns mixed with white tigers, of phoenix birds with feathers of every color. Dragons have never been dangerous to me. Even if some were, there were always other dragons who were benevolent.

It is why I always bristle when I read an article comparing chronic pain to dragons. The only way I can see such battles happening is dragon against dragon. And I am a human amalgam of dragon, phoenix, tortoise, unicorn, white tiger, and fae, wrapped in the skin of a moonlight witch.

Then, why do my dreams cripple me? The only reason I can think of is to teach me to use the insides, the powers coming from my spirit and not my body. My body is very important and vital to me. But perhaps not so much in my dreams.

And I think this piece of art, beyond anything, is one of the greatest ways I can understand myself. Every time I look at it, I weep. I even have that same cane. I know Shinga and I barely know each other, but she knows chronic pain. She knows what being a warrior means. She was in the US Army and was badly injured and treated so poorly during therapy that she has severe PTSD. She is disabled badly. She knows battles. And I want to hold her and hold her and tell her what this means to me.

http://shinga.deviantart.com/art/Awaken-Warrior-and-Rise-378439320
awaken__warrior__and_rise_by_shinga-d69b9nc
(Note: Please please refer to Shinga before borrowing or using this image. Please use the Deviant Art link. This is her work. Copyright Shinga. The only reason I displayed the actual image was in case someone can't click on the link.)
brightlotusmoon: (Default)
It is somewhat official. My characters have driven me insane. I want to get it all out, make it burst and flow so it is not inside me so much. Glass walls, however, in my brain prevent words right now. It just... stops. I have been writing the beginning of this chapter for a very long time. I wonder if there are holes in my reality. I want to channel a muse.
My headaches keep returning. Muscles in my neck and shoulders, possibly the way I sleep. My sinuses feel constantly clogged when I wake up. The cerebral palsy has been unforgiving all day. I am limping badly on my left leg, all the muscles in that leg and arm clenching, tensing, shaking. The epilepsy may have been causing small auras, I don't know. My appetite has been small, but I have eaten enough to not feel as though I am losing the anorexia recovery battle. Mmm. Health issues. Lovely.
Since this morning, I have felt like thin unbreakable glass. I am not sure what that means. It could mean many things.
There are new Francesca Lia Block books I want to read, and fiction online that I want to finish reading. I read books on lunch breaks and while waiting for things, outside home, so it takes me a while. I must always have a paperback in my purse; I must always have a large enough purse to carry a paperback book. After I finally finish Sandman: Book Of Dreams, I will read Smoke And Mirrors again, and then other books, and then possibly I will cycle back to a Gaiman book, or a Pratchett book -- most likley Good Omens as that is both.
I want to travel up a green hill with my four main characters and drink elixir that will make me fly, and overlook a wild ocean, and not be afraid to jump.

Oh. And today is Mabon. Autumn Equinox. Second Harvest. Goddess as Mother becoming Crone. There is power in this night, and I have been drinking it in without realizing, until now.

Found online:
"Mabon is considered a time of the Mysteries. It is a time to honor Aging Deities and the Spirit World. Considered a time of balance, it is when we stop and relax and enjoy the fruits of our personal harvests, whether they be from toiling in our gardens, working at our jobs, raising our families, or just coping with the hussle-bussle of everyday life. May your Mabon be memorable, and your hearts and spirits be filled to overflowing."

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