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 Blood Red Light Pale)
If you are with me in person, and I suddenly yell out and fall to my hands and knees and scream, do not be alarmed. Gently help me stand and help me to a soft place to recline. I may be unable to speak properly, and I may be unable to remember certain things. I may lick or bite my lips, I may scratch myself or pull my hair or vocalize oddly. Take me in your arms and say comforting words. If I start crying, let me cry. Tell me everything is all right. Kiss me gently on the forehead. Offer me tepid water, or coconut water, or juice, or tea. I will need to be hydrated. If I get up and start stumbling around, take my hand and follow me. If I head toward a bathroom, help me in; I will most likely be able to take care of things on my own, as it will be a very automatic process. When I am done, lead me back to the couch, chair, bed, etc. Continue to hold me or hold my hand. I may be very dysphasic and emotional. I may also be very empathic, so do your best to stay calm, with a good bedside manner. Offer me foods like fruits, crunchy bacon, pastries, dairy, vegetables, protein. No bread; I might choke.
If I start speaking oddly in a very intense manner, it may be due to one of my spirit guides helping me speak. Serena, Amara, or Amber, since Alicia can't speak outside the rabbit hole, looking glass, and Wonderland forest that directly affects my epilepsy. Serena helps me through chronic pain and fatigue. Amara helps me through any psychological distress such as anxiety, depression, and fear. Amber monitors my entire consciousness and soul. There are reasons they are named their names. These guides are fictional characters I created long ago, characters who took on their own "personalities" to become a sort of overall coping mechanism. While Serena and Alicia remain deep inside my psyche, Amara or Amber may speak through me and alongside me to work my mouth and voice if needed. You see, Amara and Amber have been with me in various forms since I was born; my brain created them in my intense creative imagination as purely fictional ways of coping with my life. Serena and Alicia came later, as ways to continue fueling that creativity. These girls are not real, but they are certainly helpful.
After I am affected by a seizure, I may also be affected by various complexities from spastic ataxic cerebral palsy: fibromyalgia, sensory processing disorder, synesthesia, hypersensitivity, ADHD Inattentive and Over-Focused Types, Obsessive-Compulsive Disorder, hypertonia, hemiparesis, hemiplegia, severe anxiety or even actual panic, problems speaking and moving, drooling and possible gasps, choking sounds, or odd vocalizations, memory disintegration, spasms, emotional outbursts. Try to not be surprised. This is technically normal for me. You can ask me questions and I may reply one way or another
Complex partial seizures via temporal lobe epilepsy are different for most epileptics. For me, having cerebral palsy, these seizures can be extremely fascinating and bizarre.
I will add that this all happened approximately an hour before I wrote this, and the main reason I was able to type this out was because Amber and Serena helped. My body and mind are both in an altered state. Reality is swimming right now. I just banged my arm against the wall, and the only reason I felt it was because of that part of my brain that is still processing the outside world.
Yes, please ask me questions of all kinds. Nothing is off limits. Speaking out helps me understand my own brain and my own intense neurology.

Edited to add:
I just got a really fascinating comment on Facebook since I copied this whole post there. I'm going to post the person's comment and then my comment. I'm still not sure what to think. Was I too harsh in my reply? Also, I still don't know what sort of point they were trying to get across:
Read more... )
brightlotusmoon: (Snow White Blood Red Dragon Witch)
Well, I find myself in a sudden, abrupt, creepy Charybdis tunnel of depression with panic, a violent episode that is making me want to rip my skin off... which means that the fibromyalgia, hypersensitivity, synesthesia, and sensory processing disorder have jumped into the fray. I know the world is not ending. I know the world is not ending. I know the world is not ending.
I need my cats to nuzzle me and nibble my cheekbones and purr very loudly in my ears, because I know the world is not ending.

Klonopin, to me! Lepidolite gemstone, to me!

Best thing for me, might be contradictory... taking shallow breaths while rocking back and forth, knees to chest, because everything is fine, I am not having an out of body experience, all is well, my skin is not on fire, I am fine, my brain is not going to destroy my sense of self.

Someone tell me a story, any story.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
Also, we went to the Ranger Surplus in Bethesda. After a long conversation with an employee about cerebral palsy, I wound up with a pair of Army boots that should help stabilize me well enough. And now the employee knows to suggest such boots to people with certain disabilities. I feel as if I made a friend and helped some sort of cause.
Rothco Jungle Boots. Oh damn, these are comfortable. Thank you husband, and thank you awesome employee at Ranger Surplus Bethesda who got into a whole fantastic conversation with me about cerebral palsy and good shoes. (Size 4 men's, which would be a size 6 women's for me. Yup. Awesome.)
A pair of Doc Martens Boots and a pair of Rothco Jungle Boots. Fitted with strong, comfy insoles. Oh, I have never been so excited about lace up military style boots. It is also a great and good challenge for my fine motor coordination issues.

And: Today has been a busy and awesome day so far. Brunch to celebrate my best friend's birthday, with nearly two dozen dear friends I haven't seen in months and years. I drank half a beer, even. It tasted like chocolate and caramel. The pills, including Soma and Klonopin, have helped me be in much less pain and much more social. My friends are amazing. I must socialize more often, truly.

Energy flowing between two people can be so extraordinary that it can energize in fascinating ways. So thank you, Jess, for helping me stay steady and stable in the midst of my own chaos. I hope the charoite pendant I gave you is helping you in as many ways as possible, even charged with my own humming wild fluid chaotic energy. We must absolutely get together again and talk about it all.
I've decided to wear pendants of lepidolite and chaorite together, along with the three lepidolite bracelets and the three charoite rings. They do calm and energize me in fantastically intense ways that I want to explore completely.

Research time, extremely. I must figure out if these bodywide spasms and twitches are due to cerebral palsy hypertonic spasticity, muscle fatigue from either or both cerebral palsy and or fibromyalgia, seizure auras primarily displaying motor and autonomic simple partial seizures, physical coldness, or plain exhaustion. I would consider all of the above, since cerebral palsy and epilepsy love to dance together like whirling dervishes.

I am very drained and tired, but I am still filled with social energy from the parties. I didn't realize that was a thing. My aura things are still buzzing and humming. This is fascinating. I need to analyze it. I had no idea I could be exhausted and still energized in such a specific psychic way.
I guess I must again thank Jess for her calming energy. My energy is always rushing, moving, streaming, even when I am fully tranquil. Something inside me is always moving faster and more intensely than I ever could, and I can rarely catch up with it. I still don't understand what it is.

Dude, magnolia bark makes for awesome sleep, but also for the most insane, bizarre, wild dreams ever. I even remember parts. I can't even begin to describe last night's biggest dream. I barely understood it while I was dreaming and I certainly cannot understand it while awake. After waking up, for about twenty minutes I had absolutely no proprioception and I wondered if I was still dreaming. That was not the fault of the 400 mg of magnolia, though, that was just cerebral palsy insanity. Damn brain damage.

Dear dreams: Please continue to be awesome, but try to tone it down just a little. Maybe some less creepy and grotesque imagery.
brightlotusmoon: (Pixie Model 2)
I see color everywhere. I taste color everywhere. I hear, sense, feel, and connect with color. I cannot imagine a world, any world, without color, even in my dreams, even without my eyes. I speak in color. Everything I touch makes me explode in color.

People ask me why I can't use my mild psychic skills to 'heal' myself. I still have trouble explaining exactly why that is not possible. I can only pull, manifest, and manipulate elemental colors and cosmic colors so much.
I do not expect people to know what I mean. My perceptions are my own. However, I know many people who understand what I mean.

"It's something about the color..."
It's always something about the color.

Often, I dream in octarine, the color of magic. Everything is magic, and everything is color, and color shows me the depths of the universe that I cannot fully reach, not until I join that cosmic wave, full of indescribable colors that define what it means to exist.

This is why religion will never work for me. Not enough color. Not enough expansion. Too much external force. I need more color. I need more inside. I need my whole brain, which cannot happen unless the dead white matter and the damaged neurons somehow move again.

I am my own connection to whatever forces move existence. I am responsible for my own existence. My Higher Brain, my Subconscious, my Quantum Psychic Brain, and my Self are working together to create the most intense positive energy I have ever realized.

My transformation will come only from within myself. I am waiting. I am moving in directions that feel so right to me, no matter what external forces claim. I am opening myself to every past hurt, every negative feeling, and shifting them into the light. It it is a constant cycle, and it hurts so much that sometimes I cannot handle it. Meditative techniques are like lifelines.

The important thing is that I keep going. I keep growing. That is what matters. I am following the colors. I am the colors. I am made of light.
brightlotusmoon: (Default)
Now I am craving a bottle of pure unsweetened liquid acai berry.

I had a seizure today, triggered by a migraine, a seizure which rode through the migraine and intensified the migraine and for a while I wanted to rip my head apart. It is getting better. I felt as though I had been tripping for a good ten minutes, and not necessarily the good sort of tripping. Reality bends and twists to conform to the brain's lightning storm. Oh, temporal lobe epilepsy.

Luna helped me, again. When I was lying on the bed trying to bring myself back to reality, Luna nudged me and licked my hand, and curled up right next to me and began to purr very loudly and very soothingly. Good girl.

Fibromyalgia pain is no better. Synesthesia has turned sound into sensation, mingling with this flare. Soothing music helps a little bit.

I am devouring The Book of Night with Moon by Diane Duane. I'd found it in a used book store, as a gift for Adam, who had lovingly read it as a teenager and could not remember the title until I did some sleuthing. It is an amazing book. Sometimes I wonder if Ms. Duane wrote a bit of truth, and now I look at my cats and wonder what they really know about the world.
brightlotusmoon: (Default)
But... I don't want arthritis and tendinitis in my knees.
Ah, well.
Mild cases, anyway.
I will do what I have to do.
Really, I am not surprised whatsoever. This has been building and a long time coming. Hello, body, I know you. Shit happens.
I did not have a fibro flare at all, not even a spike. Goodness.
I see the chiropractor tomorrow. I will ask for the ultrasound again. My lower back and my shoulders and my neck loved that last week. He adjusted me, too, and I've been able to actually sleep on my back for more than five minutes at a time without agony. Woo.

Now that the higher dose of Trileptal has taken full effect, I feel... happier. Just happier.
I love the look of that word, happier. I love the feel of it on my skin, on my tongue, in my nerves, the way it rolls around in my brain. That's what words and sounds do, they fill all my senses until I am covered in sounds that feel like various things, depending. Silk, velvet, satin, denim, corduroy, mud, ink, sand, glass, metal, cloth, plastic, fur, skin, cotton, water, paper.
I also feel relaxed. Rrreeelllaaaxxxedd. Purr. The word feels like the murmur of a content kitten.
My body, my muscles, nice and loose. For now. No Soma. Just me. Not completely loose, but well enough.

I should stop reacting to people who think they know what is best for me, when they don't know me.

Adam made sauteed salmon, and we mixed it up in a salad with baby spinach, baby arugula, olives, artichoke, cucumbers, cherry tomatoes, mushrooms, and olive oil. It was amazing.
brightlotusmoon: (Default)
I am starting to wonder if synesthesia can change or fade over time.
I don't associate colors and tastes with words and numbers anymore, which is often considered the "most common" form of synesthesia, which I had when I was younger.
Now, I only associate -- in a mad blend -- colors, sounds, music, words, sensation, and emotion. A certain word will cause a certain sensation along my skin, including my tongue, so perhaps taste. Days, months, and numbers still have distinct personalities, but not colors or tastes anymore.
It all gets stronger during seizures, of course.
I have no idea how to categorize it, if it could be categorized. Oh... the word "categorize" is slippery and shiny, but with sharp edges. Oh, that feels nice. Categorize.

I hadn't thought about it much until this lively discussion about how certain authors make me twitch in indescribable ways.
brightlotusmoon: (Default)
My most recent synesthetic experiences have led me to believe that my taste sensations are becoming ghosts compared to the cross-linking of color, sound, texture, and emotion. Color and music are still deeply intertwined, but they don't taste much anymore: now it's all about texture, personality, feeling, emotion. The colors of dark red, cobalt blue, and forest green all have such fascinating textures, emotions, and personalities -- but their tastes are almost ghostly. This is fine by me, honestly. The taste of black used to be so thick and sticky, and now it's... less so. Now it just feels thick and sticky, and sounds like molasses pouring. I wonder why this happens?

Had a fascinating experience after last night's tantric sex. My mind partitioned during meditation, and I connected to ley lines in eight different countries (Greece, Ireland, Egypt, Brazil, Italy, Russia, Romania, Japan). I'm still trying to figure out that connection. (Yes, skeptics can scoff, I don't mind.) It took me a while to come down off the high. Adam kept smiling at me like he knew a secret. Silly mage, I thought. It turns out, though, that he's been partitioning his spirit all over the world for years now. It took us connecting on that higher level for me to get it myself. I'm a slow learner when it comes to magic, but when I do it, I do it fully. Yay for me.
brightlotusmoon: (Default)
I've ordered a bunch of stuff from, but I think my favorite product is the Harmony Elixir Spray. I got a 2.5 oz spray and customized it with "Other Essential Oils By Request." I asked Vicki to blend the scents of Wild Rose, Orchid, and Chamomile Neroli. And what I got... it could really only be expressed via a synesthetic's prose.
The email that I sent to her:
Read more... )
Also, the Gaia Protection Lotion has a similar effect. I loves my Gaia Protection Lotion.
brightlotusmoon: (Default)
Something I don't believe I have ever told anyone:

It seems that for my entire life, I have had music to color and personification acquired synesthesia, as well as a few other types whose names I do not know, associated with feeling, texture, taste and sound. Particularly during an epileptic seizure. Mainly because the synesthesia was most likely triggered by the epilepsy, which was triggered by the cerebral palsy. It all goes back to the cerebral palsy.
I can't even begin to explain what it's like... but a recent post on my friend's page made me decide to just come out and say it. When I was younger, I thought almost everyone did this -- saw colors or felt sensations when hearing music or thinking about a certain day or a month. It's not something that can be controlled, and no, it's not common or typical. It's not just that a word makes me think of a taste or feeling: the word and the taste or feeling are the exact same thing.
(The days Saturday and Sunday are cheery, sunshine-flavored twins, but Saturday is cobalt blue, and Sunday is royal blue.)
(Sting's "Desert Rose" explodes with lush greens, golds and reds like a vibrant Amazonian rainforest, ripe with the smells of rushing, crystal clean waters and sunlight in the trees. It is full of passion, intense desire, almost anguish, and each musical note cries and thunders and aches and pulls at every one of my senses.
It's one of my favorite songs.)

There. It's out. I'm not crazy.

Twenty-seven years of crazy-but-not-crazy and this is the first I've spoken publicly about it.


brightlotusmoon: (Default)

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