brightlotusmoon: (Asha)

Good things.
The personal therapy protocol is juuust starting to work. Slowly and softly. The doctors said slipping off is natural. But my slips are fewer. I think the new drug is working much faster than expected. No terrible side effects after all between dry mouth and that tingly sensation that the world is shiny shiny shiny. But I can already feel those most compulsive thoughts starting to be quiet.

Now, if I could just not be badgered by acquaintances who want me to be better now now now. Yes, this has had me in its psychiatric grip for over four years. It takes tiiime to get the ideal treatment. Yaaaaugh, leave me alone. You don't know. You are not inside my neurology.
Repeat. Rinse.
Those of you who get it, you get it.

So much meditation. It is in my dreams. I am ready to work myself through and beyond. Shut up about it taking all these years. Damaged braining is hard.

I make it hard for people to love me well enough to help. Which is why I need to do this on my own.

/venting ranty ramble

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: (Asha)
Yes, obviously. Sheesh.

http://m.huffpost.com/us/entry/6081918

Friends have been sharing this back and forth into repetitive boredom, so I'll just add: Yes, this is obviously a strategy I've been implementing for a while in order to manage my mental illnesses, it is totally part of a very very specific personal therapeutic ritual that will take at least another couple of months to complete, and for Loki's sake, this stuff takes time, quit asking if I'm better yet. I've only been ritualizing for three years; most of this takes at least five. Plus, I can't just magically fix damaged neural pathways by thinking happy thoughts. Most people spend decades in therapy, while their acquaintances urge them to fix themselves faster. The frantic urging especially comes from people who've never even been in states of extreme anxiety, clinical depression, endless chronic pain, obsession, compulsion, memory disintegration, traumatic stress, dissociation, depersonalization, derealization. I often hold back from just punching walls. Therapeutic ritual and mindfulness in mental artistry takes time and a large amount of control. I've only been doing it since 2011. By 2015 something will at least be, as they say, Fixed. At least enough to allow other treatments to fall into place. Until I finish that intense ongoing ritual, I'll keep on battling where battles must be fought.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
My modified Disablility Compensated Qi Gong exercises always help, mentally and spiritually and psychologically and physiologically. Like yoga, except Fake Yoga Cripple Style that is not actually yoga. (FYCS. FIX. Ha ha ha...) (Or hey, Fake Yoga Cripple Style Modified Exercise. FYCSME = FIX ME. Ha ha. Wow. Dude.)

But it isn't helping today. I'm too Hollow, which is my term for deep major depression. I'm too Postictal, after that unexpectedly awful seizure yesterday and its aftershock which were tiny seizures for hours. Emotional responses are foreign and results of emotion are mere symptoms, like crying and laughing. I will meditate again, do more qigong work, and breathe and much as possible.
FYI. I am having an episode of pure major Depression plus major Anxiety. This is accompanied by mild memory loss of the past two days. Everything is foggy. I know I should be upset about something, but I cannot feel upset. What is upset, anyway? I think I hurt myself emotionally yesterday. I wish I remembered what it was. I believe it started out with false happiness. Remember that weird assumption of some sort of hypomania? I think I was outside of my rational mind.

Back to special exercises.
People keep suggesting and recommending breathing exercises. I know all of that. I know people just want to share their personal remedies. I love it. Please don't think I am rejecting you. I love hearing your stories. Even the stories about yoga. I wish I could explain why just seeing or hearing the word yoga evokes a sad, upset reaction. It isn't that I am unable to do yoga. It is just that yoga extremists do not listen nor care about my need for compensation. My body was born crooked. I cannot form a proper straight line even if I held on to something. No amount of cajoling, insisting, or pushing different forms will change that. Please don't do that. Please just accept that I have to perform qi gong differently, and that qi gong included poses that are similar to yoga, and that yoga is not the greatest panacea of healing holistic practices. This is part of why I don't want to visit California, which makes absolutely no sense and makes me look prejudiced.

So. Please, please do talk about how much yoga is healing you, because that is beautiful and I am genuinely, honestly joyfully happy. But if you wish to suggest a yoga pose that can be modified for someone with a shaky, spastic, crippled body, please suggest an alternate form. That is all I ask. There is no such thing as a real panacea, even in the botanical world, even in the plant and herb world, and certainly not in the exercise world. It is entirely possible that I will find a set of yoga exercises that will really, truly help me, and I will join the ranks of yoga enthusiasts. Anything is possible. Nothing is off limits. Except evangelism. If I wanted something pushed down my throat, I will drink water mixed with special fruit and plant powders, like sea buckthorn and moringa.
This is coming from my years as a holistic enthusiast and pusher. I was bad. I was essentially an asshole. And then I learned that it was just wrong. I never want to do that again. Just because something works perfectly for me does not mean it will work at all for someone else.

Any form of good physical-spiritual combination exercise, be it yoga, qigong, taichi, strength training, cardio, dead lift weight, isometrics, plyometrics, dance, hardcore dance, etc, is wonderful and beautiful and strengthening, and will help everyone in some personal powerful way. That is the point of exercise.
I love you all. If you really want to help me, don't push me. Just guide me.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
Oh! Oh! I forgot! I'd promised a few people here that I would let them know how I was doing with super high doses of pure Omega-3, particularly DHA. As it turns out, calamari oil is much better than krill. And so, I've been taking calamari oil, which contains 500 mg DHA, and 125 mg EPA, which I think is the highest one can go so far.
https://www.swansonvitamins.com/swanson-efas-super-dha-500-from-calamari-30-sgels
It's officially been one month, so I think it is okay to report my findings so far: I feel as though my brain is, for lack of a better term, nourished. My concentration has gotten easier. I had been considering going back on an ADHD drug for ADD-Inattentive, but the Calamari Oil seems to do what Strattera did all those years ago. Neurologically, I feel, well, hmmm... padded? This is so hard to explain! Neuromuscular issues seem slightly easier. Like, I am starting to unconsciously use my left hand more often for "simple" tasks like pouring liquid, picking up small objects. I can't insert and turn a key in a lock, and I can't squeeze any exercise equipment, but the little tiny compensated things are starting to feel smoother. Does that make sense? It really does feel like a kind of CNS nourishment.
I'm including the link to the product I'm currently taking. There is another brand via Vitacost, called Doctor's best, that offers the same dosage at different prices with different pill counts, but this is what I'm using. I even punctured a capsule to see how my cats would like it. Luna and Calliope seem intrigued. I may just brush it into Jupiter's fur, since he has dry skin.
There have been some studies showing that some brain injuries can be partially treated with extremely high doses of pure omega-3, so I'm happy to make myself a self-advocate subject. I don't know what this will mean for my CP as a whole, and I am not expecting nor hoping that anything major will happen. But I do like this feeling that my neuromuscular issues might ease up just enough to let my hemiplegia become less spastic...
brightlotusmoon: (Snow White Ruby Blood Dragon Witch)


I had a seizure. I didn't mean to. It lasted three minutes. Complex partial. I'm so sorry. I suck at everything. I can't think. Word fail. Word flail. I'm sorry. I have to something something rest and medicine. I'm sorry about the seizure. I remember Alicia's kiss. I remember her peace. I remember Koan's purring, I remember Serena's embrace. I remember whiteness and vortex and confusion. I'm so sorry, brain. Something something take your Klonopin and Passionflower and rest easy.
Maybe winter. Maybe I don't know. Things hurt. I'm just cold. Everything is my fault.

brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
I had a seizure yesterday, recorded it on Facebook, and now must copy it it here, since I always do.

Soo, electric pain and spasticity are now preceding simple partial seizures, previously called auras, which lead to complex partial seizures, hey? Brain, you are awesomely bizarre. But we knew that. Long story short, cerebral palsy and fibromyalgia and epilepsy like to team up. BRB, fighting a seizure, probably not winning. See you all in a few minutes.

The sound of one hand striking a keyboard whilst electricity, burning, floods the semi-paralyzed other half of the body, spastic hemiplegia indeed... hypertonia, ataxia, except the brain has no pain receptors. so why is it burning, I laugh.
I have never been to space until now. Some place in space anyhow. My chair became a shuttle. My copilots were my human coping mechanisms called imaginary friends, yes I know the difference between reality and fiction, my girls are fiction, and if you think I don't understand, oh my you are badly mistaken, and how dare you assume, no wait, that was from a blog post comment thread, never mind.
There were so many stars, I think, at least shining spots far off in that darkness. There were nebulas everywhere. So much color. Maybe it was another dimension? I have never seen outer space like this.
Amara and Alicia held my hands the whole time. Alicia has broken away from the Wonderland force fields to interact with the rest of my brain. This means something neurologically, I think. She is now taking on more than just epilepsy. Oh. I see now. Thank you, Alicia.
I'm so tired now. But I must finish this. It is fading. NO.
I was in my own head, going ninety-nine percent light speed, felt like thirty-five miles an hour, that was a Futurama joke, I don't care if you are sick of my Futurama quotes, bite me. And then, and then, that prismatic explosion of every color blending into white, since that is how white is created, and a howling noise like a perfect wind screaming through alleys, and I was sliding off my chair save for my hands clawing grasping at the leather padded chair arms and my lungs were sucking in air and my lips were chapped and my mouth was dry and my neck hurt and I was shaking.
And Jupiter was meyowling. He is still meyowling. I have to go see what he wants.
You know those dreams where you wake up and realize you are still dreaming? No, I stopped, but it took a moment. My eyes were still open.
I am still open.

And now I must perform intricate physical therapy stretching qigong dance moves to force my left side to function. Love you too, epilepsy. Here comes a Soma pill to begin muscle relaxing and a Klonopin pill to begin mental relaxation. Go!

Update, December 11: Still postictal, but incredibly positive. Light-hearted, even. I feel like dancing.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch)
"Sometimes the only way I know how to work through something is by writing..."
Hi.

"Now I know that the number one rule to being cool is to seem unfazed, to never admit that anything scares you or impresses you or excites you. Somebody once told me it's like walking through life like this. You protect yourself from all the unexpected miseries or hurt that might show up. But I try to walk through life like this. And yes, that means catching all of those miseries and hurt, but it also means that when beautiful, amazing things just fall out of the sky, I'm ready to catch them. "

I need this. I've spent my entire life catching all of those hurts, and sometimes those hurts are beautiful and amazing - because they live inside of me. Even the painful parts. Even the Monsters. I don't always declare war on the symptoms, I often imagine myself using psychological coping mechanisms, transporting my quiet self to a Zen garden with cats and sunlight and wildflowers, as the warrior parts of my brain battle those Pain Monsters with spears and war cries. It is a mind over matter dance that does not erode the symptoms, but helps me work with and deal with them. I apply creative writing to cope and to run to other worlds in my mind.

It is seen as Positive Thinking. But I tend to flinch at that term, because it is usually followed up with a sunshine up the ass platitude. I do apply a method of positive thinking to my conditions, disorders, and disabilities. But it is my own personal method, and whenever someone tries to insist that I use a different method, I naturally stand firm and stare them down. This is why I am happy that all of my doctors, specialists, and therapists are extremely willing to help me achieve my own positive thinking, because it is my own, and I know exactly what I want from it.
Unfortunately, it also makes me extremely vulnerable to criticism. I am probably Doing It Wrong. I am probably Wanting To Be Chronically Ill All The Time. I am probably Magically Convincing Myself That I Am Getting Worse. I Obviously Am Not Thinking Positively Enough - because my biggest coping mechanism is to write it down, and to share my newest findings with people I love and with people who understand my situation. At least, those are my assumptions. I made a few poor assumptions and lost a few acquaintances. But I moved on. Now, I am still writing, still speaking out. Now, I am determined to hold on to my personal method of positive thinking no matter who tries to change that method.

That is why I love this message from Sarah Kay. No one else can work inside my mind like I can. Each of us has the power to think positively in a way that works for us and us alone.

The next time somebody tells you that you need to stop doing it This way and start doing it That way, think long and hard about it before you even reply. Some things are just not worth debating. Sometimes all you can do is smile and nod and say "Thank you for the advice" - and move on. It is your mind, after all.

http://dotsub.com/view/e8f7d701-e410-464d-9051-eeae8a1ddd44/viewTranscript/eng

http://www.upworthy.com/watch-the-ted-talk-that-inspired-two-standing-ovations?g=2

I will probably listen to this video enough to memorize or recite most of it, and my poor memory will do its best to hold it close.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch)
Also, I think I had a seizure before waking up this morning. When I spoke with my mother, she said I sounded like I'd had a seizure. I am starting to... remember things. My brain feels haunted and full of kaleidoscope wilderness. I vaguely recall seeing Alicia. I vaguely recall seeing Amara, the way they struggled to keep my neurology stable. Amara, pale like alabaster, kept changing her eye and hair colors so I knew she was emotional.
I need to go do... the... you know, the post-seizure, the postictal things, the management, the getting better procedures. It has been a long long mind day. I did not know why I have been so tired. Luna in particular has been following me around, meowling like a queen calling her kitten. She has been licking me whenever she gets close. In that same vein, Rose has been trilling for my attention when I come into the bedroom, staring at me with very wide eyes. She begs me to pet and hug her, and now I realize why. Even Jupiter has been yowing at me when he sees me.
Luna is curled up at my feet now. When I go to have a shower, I will leave the bathroom door open just enough for her to come in, in case she wants to watch me.
Cats know. Cats always know.

I've been feeling randomly ill all day with fibromyalgia flares and allergies. And, now that I remember, seizure aftereffects.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch)
This is almost kind of ridiculous.
I still have a migraine... and I am fully full of bouncing energy, and vicious pain, and emotional thrill, and I have a smile on my face just because for no reason, and I am in terrible terrible pain, and I am still mildly postictal, and I am on the edge of a major depression episode, and I am making happy thrilled noises, and I cannot explain any of it. I could connect it to being smacked in the head twice yesterday, but I doubt it.
But I'm just going with it. Because why not.
I totally need, like, a plushie brain, with the amygdala specifically colored in a happy color.
brightlotusmoon: (Snow White Blood Red Warrior)
In the past week, I have learned some fascinating things about cerebral palsy that I honestly never knew and which truly puts many things into perspective.

1. We tend to exert more energy than others - around 3 to 5 percent daily.
2. We tend to have higher, faster metabolisms. For some, this can lead to clinical, neurological "nervous loss of appetite" - not always the eating disorder, but an actual screw-up between signals being sent between the brain and the stomach. Some of us do develop eating disorders at some point in our lives.
3. 75 percent of us will lose our ability to walk by age 25, or at least we will begin a slow decline, and of that percent, most of us will need walking assistance devices such as canes, no matter how mild the cerebral palsy.
4. After age 30, most of us will begin to rapidly decline physically, neurologically, physiologically, and psychiatrically. Our neuromuscular and musculoskeletal systems will quietly suffer and lead to conditions like fibromyalgia, arthritis, neuralgia, migraines, TMJ, sciatica, seizures, sleep problems, and breakdowns of connective tissues.
5. A vast percentage of us have clinical depression, anxiety disorders, bipolar, and other major mental illnesses.
6. A huge percentage of us have sensory processing disorders, spatial relation difficulties, and memory problems that can get worse after age 30.
7. Even the most mild cases of CP may wind up needing permanent care and assistance by age 60.
8. No amount of exercise, yoga, dietary changes, nutritional boosts, positive thinking, holistic treatments, or pharmaceutical treatments can completely slow the progression of syndromes and disorders comorbidly associated with cerebral palsy. While the damage done is static and non-progressive, the repercussions from that damage will continue to affect the brain and body for the rest of the patient's life. It is not our fault, we cannot and must not fee guilty or ashamed, and we must learn that it is completely all right to ask for help.

***

Excuse me, I need to go cry quietly for a while.
You know my phone number if you wanna call and chat. If not, and you wanna chat, message me. I'll probably be crying.
brightlotusmoon: (Snow White Blood Red Light Pale)
You know it is a bad day when...

A Cerebral Palsy induced fall against carpeted stairs leads to a Complex Partial Seizure which leads to a Panic Attack with wild animal sobbing so intense your partner comes up and worries to death over you and carefully leads you to a couch and gives you water and holds you.

"It's just stairs," you tell yourself over and over. "You can maneuver them. It's just stairs." And at the top, exhausted by victory, you lay on the floor, weak as a new kitten, heart and head pounding to near bursting, crying until it sounds like laughing. And maybe all you can do in that horrific posictal state is laugh. On the inside. Because Epilepsy is a monster and has no qualms about gaining allies.
Now it is time for Fibromyalgia to have its turn. Burn body burn.

I am so tired. I have no more synonyms for exhausted, fatigued, beaten, weakened. I am done.
But I will never stop. If I cannot be myself I will be a dragon.

For those who know my Healthy Multiplicity: indeed, Alicia and Amara were like drill sergeants in my mind. They were the only things that kept me climbing those mountainous stairs. I love my human coping mechanisms.
Typing doesn't make me tired ever. And this must be written.



So... *cough*
I am okay. But I am not okay at all. So many painful things are inside my brain and my body.
It is okay to talk about that, right? To be not okay? To try to pretend to be okay?
See, that is why I love online friendships. Because if I cannot speak without bursting into stuttering wild sobbing, I can type slowly and people will understand. Right? Oh, my everything hurts.
I could say I have a muscle pain, or a joint pain, or a migraine... but I have everything pain everywhere. And I don't know how to explain it without it coming across as "My pain is worse than yours!" and I don't want to do that. Because all pain is horrible. My pain is no worse than yours. Pain is pain is pain.
I don't know what to say. My brain is so everywhere. I feel so split open and raw and drifting. I think some of the things keeping me together are my fictional characters, who still demand their stories.
I want to sob and scream and howl until I am so raw that I cannot speak. Is that okay? I can do that, right? Nobody will bitch at me for complaining, right? I just don't know. I don't know what to do. I don't know how to feel. Fear is something that feels flat but understandable. Like am emotion I am aware of but unable to truly experience in a deep true way. Like crying. It is a thing that is happening. I just feel confused. Why do I feel?
You know?

Oh, yes. The seizure. Oh, Alicia. She appeared to me so quickly, so fiercely, I had no choice but to grab her outstretched hand and run with her. She yelled, "Come with me now! You need to get through the looking glass! There is no time! Amara is waiting! Serena is waiting! Go, go, go!" and she almost shoved me through the portal, and all I remember is Amara catching me in her arms... Amara with her truly calico hair and her stormy eyes of deep purple and darkest blue and pure gold, her short slim muscled hourglass body that held me in an iron grip, my mouth against her olive-colored neck, and our tumble to a cavern floor that was lit with sunlight and moonlight, so I could see her properly, how she was only a few inches taller than me, her mouth pouty and full, her oval face the dream of every American woman in a plastic surgeon's office, her straight teeth bared in strain. She got to her feet gracefully and looked down at me and said in the voice of temple bells, "Rest now. Serena will be here soon. I've never fully introduced myself, but that can wait. We have so much time."
I shook my head. "Alicia said there was no time--"
Amara smiled and entranced me. "Only in her dimension. Here, there is every time. I am everlasting, after all. I love and guard your entire mind and brain, remember? I work with my sister, Amber, who encases everything in your varied forms of spirit and soul and energy and power. Alicia and Serena are limited. Amber and I are unlimited. We shall be with you until the end of everything. You hurt badly. I sense it. Serena will be here in a moment. I will stay with you."
I stared at her. "I've never known you until now. I love you."
"Yes. You were meant to. I am the culmination of your neurology, your neurochemistry, your biochemistry, the stuff in your head that help make you the things that are you. A Self. A Mind. A Brain. I change as you need to change. I will always be here."
Amara my immortal began to slowly fade, and Serena came running. She gathered me in her arms and murmured soothing words, and suddenly I felt as calm and as safe as I ever could.
And then I awoke, and I was a person climbing the stairs.
And I climbed the stairs, sobbing and forcing myself, and at the top of the stairs I lay crying, and then my husband found me and helped me to my work couch and gave me water, and I couldn't talk about my girls, but it was all right. I would be all right.
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: (Snow White Blood Red Light Pale)
Call me Courage.
It takes a lot of strength to talk about life like this.

So, I just "woke up" splayed uncomfortably in my comfortable leather task chair, head lolled to the right, mouth open and drooling, left side full of hemiplegic hypertonic hemiparesis, right side spasming in its own way, brain stuffed with cotton, voices inside me screaming "GET UP, GET UP, OPEN YOUR EYES, DO IT NOW. JOANNA! WAKE UP!" Voices I recognized as Alicia, Serena, Amara, and Amber - all four of my spirit guides, aka healthy multiplicity selves, aka characters I created long ago that took on lives of their own deep inside my damaged brain. I have never, ever heard them in chorus. I felt something like a massive SHOVE - very similar to a hypnic jerk, which is actually extremely common during testings for epilepsy. Hypnic jerks, also known as hypnogogic jerks, night starts, and sleep starts, are those weird sensations you get between deep sleep and waking when you suddenly feel as though you have fallen onto your own bed from high above.
There was no panic in those cries, simply intensity. They were all desperate to bring me around. See, Alicia is the one who guides me through the seizures and brings me to Serena, who guides me though the pain. If needed, Amara steps forth to ease the anxiety, panic, and fear. And although Amber has kept silent and hidden for decades, Amber is the one who soothes my entire soul and my entire consciousness with a blend of magics and quantum physics that I still cannot translate into common words. However, they have always been separate and individual. The only ones who have ever communicated in any way have been Alicia and Serena, if only to pass me between each other with nods and whispers.
And so I awoke, or came out of the seizure, twisted and deeply exhausted from cerebral palsy complexities, compounded by fibromyalgia, sensory processing disorder, synesthesia, and hypersensitivity. For several agonizing moments, I did not know where I was - and the only reason I knew my own self was because the Guides poured all my memories quickly into my mind, into the live, non-damaged bits of my brain. I know that doesn't make any real medical neurological sense, but I cannot explain it any other way. The only reason I am typing this up is because my hands are moving of their own accord. I have a silly feeling that Serena and Amber might be helping me. Keep in mind that these women are not "real" - they are fictional characters. And they know it. But they are parts of my mind and have always been. I am still wracked with deep anxiety, and Amara is wrapping me in the most comforting... things? Images and sensations of fabrics. Ideas of beautiful imagery? Tiny mewling soft kittens happy and adored and warm? Anything to keep me calm and happy and anything to keep me from breaking down in screaming tears. I can feel an episode of clinical major depression creeping up on me.
And I still do not know why any of this is happening. I have lost small memories of today. I do not mourn them too much. I just want to feel better.
Can someone tell me a story, please? Any kind of story?
brightlotusmoon: (Snow White Blood Red Light Pale)
Because people have been asking why my voice "sometimes sounds weird when I talk for long periods of time." And why I often seem "functionally essentially unable to carry out certain tasks without being reminded step by step."
http://en.wikipedia.org/wiki/Dysarthria
http://en.wikipedia.org/wiki/Ideational_apraxia
http://en.wikipedia.org/wiki/Cerebellar_ataxia
http://en.wikipedia.org/wiki/Expressive_aphasia (after seizures and severe exhaustion of varying kinds, especially if the fatigue is accompanied by severe spasticity and hemiparesis with hemiplegia.)
http://en.wikipedia.org/wiki/Cerebral_palsy
Cerebral palsy is funny like that...

Also.
Why, hello, thunderstorm.
Why, hello, anxiety attacks and seizure threats and fibromyalgia flare and combined migraine-tension headaches and knee swelling and ulnar nerve entrapment pain.
Why, hello, Klonopin and Ultram and Baclofen and Codeine.
Why, hello, gemstone jewelry that acts like worry stones.
Why, hello, intense deep breathing qi gong meditative exercises
Sometimes you just have to fight dirty with advanced weaponry, you know?

Statuesque

Apr. 17th, 2013 10:04 pm
brightlotusmoon: (Snow White Blood Red Dragon Witch)
And here is the thing about mild spastic ataxic hemiplegic cerebral palsy that I don't normally talk about, since it is kind of horrifying.
See, earlier in the evening, I'd had a second small seizure that caused my entire body to tense up, spasm, flail, and twist. It was over in seconds... but it had triggered a spastic hemiplegia "flare" that turned my entire left side into a "ghost" - I could barely feel anything on that side, I couldn't move my arm or leg at all, and I had to actively speak to myself to give orders. "Brain, open the left hand. Brain, straighten the left leg." My face was affected, my eye was affected, the left side of my mouth was affected. I could speak, but with a mild slur. The muscles on the left side of my face would twitch and then clench before barely relaxing. Adam massaged me and held my hands and comforted me while I let it all happen. We conversed about the general problems in my specific case of left side spastic ataxic hypertonia hemiparetic mild hemiplegic cerebral palsy - since each patient is much different. The concept of "When it stops" turned into "If it stops" - which was part of the terror. It did stop, during the "Darmok" episode of Star Trek The Next Generation. I finally forced myself to limp upstairs and take muscle relaxants. I am only just now able to stretch, three hours later.
I know there maybe be people with cerebral palsy who will want to "compare" their symptoms and sensations and lack of sensation, and there may be people who care for people with cerebral palsy who will want to "compare" their patients' symptoms and sensations and lack of sensations. But I don't really want to hear that right now. This is just something I needed to get out. I don't know many people without cerebral palsy can really really get it. The exquisite agony as sensation slowly returns, and then the ecstatic joy of actual feeling and movement. I don't know how similar it is to any other sort of -plegic condition. I know nothing except my own experiences. But see, if you are ever with me, and my body goes through a serious of spastic twitching flailing movements, be prepared for my left side to drag, to barely move, to generally be so tense and clenched that my muscles are like stone. Fibromyalgia flares may certainly follow. Such as the one I am in right now.
I only write this to recall, recollect, understand my own self and what I go through in these moments, these "flare" of a sort. In every "regular" moment, every day, all day, my left side is tense, clenched, prone to small spasms. But during "flares" triggered by epilepsy, fatigue, physical excitement, emotional excitement... those moments are scary and filled with strange creepy moments. I know other sufferers have such moments happen. I know each sufferer is different no matter how similar the symptoms are. If I don't write down what I personally experience in my own body, I may not remember for next time.
This, in fact, may be a first entry in a sort of "memory journal" if that is what it takes to recall and recognize and understand myself.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
In my utmost joy at finally seeing warm sunny weather, I keep forgetting that warm weather tends to increase my flares and episodes of fibromyalgia, nerve pain, gustatory rhinitus (and obviously spring allergies), OCD, ADD, and epilepsy (be it actual seizures or simple reality shifts). However, considering that I have almost twenty separate diagnosed ailments, I will be grateful and take what I can get, since cold weather aggravates... everything.
Addendum: My pain specialist head nurse believes I may have arthritis in at least my right knee and wants me to go get tested for all arthritis types. I don't wanna. No, seriously. I don't want to know. I know I must, I have to. Because of the pain and the swelling. But you know how it is. "Well, fuck, one more thing, huh?" Although at this point, I might as well just get it over with and if it's true I might as well just accept it. Body, you fucking asshat.

Time for a cheeseburger, damn it. And pistachios. PISTACHIOS. Gods, I want pistachio ice cream.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
I literally feel so fucked up that the only foods I've been able to eat are yogurt, cheese, red meat, lettuce, and potatoes. I suppose that it's from the postictal state. I'm trying so, so hard to eat as much as I can to at least get enough calories and nutrition. It is hard to think straight. The protein from the meat and yogurt is starting to help. So is the B-Complex vitamin from earlier.

I've turned off the thermostat, opened several windows, and turned on a couple of fans, for both exhaust and intake. The cats are enjoying various sunbeams. I had incredibly strange dreams, but that is what happens when I'm postictal.

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