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: (Default)
So, that was either a very weird complex partial seizure or a rare psychic experience. Or both. Regardless, I'm off to take some medicine and rest my brain. I think I used too many spears.

I do not remember much. What little I can recall involved synesthesia turned up to eleven when I closed my eyes, hyperactive shapes and sounds rushing into my brain, and a deep sense of expansion far beyond anything I could describe - like being in a craft flying toward outer space itself; a sense of G-forces pressing me down until I spiraled into darkness and then saw nothing but brilliant dots of light and sensed nothing but trillions of unexplainable entities, everywhere, all at once. There was so much heat and cold simultaneously, blackness and ice and fire without air, crushing me into a bare essence of a sentient being. It was as though I were coming apart atom by atom. I was screaming without sound. When it stopped, I couldn't hear, see, feel, or speak for a minute or two. When I managed to open my eyes, I was lying twisted against the back of the couch, gasping heavily, sweat pouring down my face. I truly do not know what happened. I am struggling to hold on to even a tiny bit of that memory, but it is fading even as I write this. I'm sorry.

The transcript for the Futurama episode "Godfellas."
Bender's conversation with the God Galaxy is the main reason why this is one of my favorite episodes. It is also part of why, ten years ago, I declared myself a pantheistic polytheistic polyagnostic eclectic pagan witch who observes humanistic paganism and spiritual humanism. It is also part of why I am convinced that magic and physics go together like limes and coconuts.

FYI, this particular postictal state (after seizure state) has me somewhat energetic and verbose as well as mildly hypergraphic, despite the migraine and burning muscles and spastic limbs and aching nerves. I am going to try and direct that energy into writing chapters and stories now. Questions are welcome.

I also wanted to add a photo. I have gotten into a habit of photographing my face after certain seizures, to document the physical aftereffects even if I am the only one who sees them. I have a few friends in the medical industry who might understand why I do this. One such friend mentioned that in this picture, my usual spastic imbalance due to cerebral palsy is not there, meaning that the seizure wore me out so badly that my facial muscles went fully lax and exhausted, with no spastic hemiplegia on the left side. My normal is gone right now, turned into everyone else's normal. It does make me sad, because now I don't look like myself; I look alien. My face doesn't look imbalanced or shifted or compensated. That seizure obviously took it out of me, because I am also fatigued and lethargic beyond description.
But this is very good to know, so I can keep an eye out for future seizure effects.

brightlotusmoon: (Default)
So, I'm going bra shopping. I have to. Apparently, like eighty percent of women, I've been wearing the wrong size. I'm not a 34B. Or a 36B.
I'm a 32C or D.
No, really. The fittings and calculators said so.
WTF. 32C. 32D. Depending on how it goes.
I am staring at my chest. I do not look like a C cup. This is going to be fascinating and weird.
Apparently, wearing the right bra can help reshape breast tissue, too, so that may be useful for the scar on my right breast.
I feel so weird!

I need to find dinner. I don't remember what I've eaten, except for a small bowl of wheat flake cereal, a re-heated cheeseburger, and coffee with the Garden Greens Chocoberry powder, which is high-calorie.

I feel less tired, less anxious. Good.
brightlotusmoon: (Default)
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