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)
The replacement medical dog tag, which features the main medical conditions that essentially encompass most other syndromes - cerebral palsy and autism have so many comorbidities and associated disorders that most medics will get the idea.

medicalalertpendant


It came via a website called Sticky Jewelry. They're pretty awesome, and affordable. This came with a free cleaning chamois cloth and a free medical identification card on which to fill out vital information, like emergency contact, physician phone number, prescriptions, blood type.

The pendant I attached it to is an Etsy-bought custom-made ouroboros pentacle with an amber stone. It has a lot of power for me. Also, it's a fun stim.
brightlotusmoon: (Asha)
Well, that was a thing.
The day before, I almost lost part of my right ring finger. I blame lack of awareness (duh) and spasticity. See, usually after I use the hand mixer for my cocoa coffee concoctions in my particular pitcher (take that, coffee frothers), when I wash it I submerse it in soapy water and let it spin. But this once, I accidentally had my right hand right near the spinning blades. I was holding the handle in my left hand (I know, I know), which suddenly spasmed (I know, I know), and then my right hand spasmed (I know, right?) and suddenly my third finger had touched a blade for a nanosecond before I lifted my left thumb off the button.
Nanoseconds are long when you're getting wounded.
And so, there's a tiny chunk missing off the very tip, to the right of the nail. I am absolutely amazed that's all that happened. Sloppy Luck wins again. There are enough layers of skin missing that the tiny circular wound was seeping serum after the bleeding stopped (which took a while). It now looks similar to a third degree burn.
(I have a picture. Wanna see?)
Adam, who was in California and AV teching a meeting when I called for first aid advice, said that anything deeper than a quarter of an inch would require stitches (we resorted to texting; he was surprisingly calm, but I am exasperating on a good day and he's a former EMT who has broken and flayed all his fingers over time, so). And that got me thinking about what I would do if I were alone and really injured. And I realized that in a serious major thing, my only chance, aside from the Comcast security camera dealie, would be to make friends with one of the townhouse owners right near me and call them to drive me to a hospital. There is Nicee, who has already told me that in an emergency, I could lean my head out the window and scream her name and she would come over from her place just around the corner. But I forget if she has a car. Damn, I need to go over there. She's usually out on her front walk smoking when I go for the mail. Other than waving hello and chatting, I don't remember which house is hers. Fuck. I'm screwed. I don't know why I haven't made friends with most of my neighbors since 2005.

Anyway, I can't find the specific finger bandages, so I've been using regular Band-Aids. And doing that with fingertip injuries is really fucking annoying.

When I took my shower, the bandage had to come off... but the worst thing was that I got soap in the wound. Meh.

Also, ring fingers are important. Especially when you have spastic hypertonia affecting one hand and the hand that is injured is your good hand. Good thing I taught myself to type with my first two fingers on both hands.
brightlotusmoon: (Pixie Model 1)
Oh, damn. I forgot to celebrate my first SSDI Approval anniversary on July 10th. Eh, better late.
Besides, as of August, I'll have my Medicare Part A activated - and I did turn down Part B, because I like Carefirst too much.
I hope I made the best decision for now, since it's not like I am so bad that I am constantly in and out of clinics and such. Right?

http://brightlotusmoon.livejournal.com/2012/07/10/
http://brightlotusmoon.livejournal.com/2012/07/11/
http://brightlotusmoon.livejournal.com/1530741.html

Also, I have so many random head and face pains. It could be so many things. Migraine, eye strain, neck pain, tension headache, dry sinus, jaw pain, cranial nerve pains, bone issues. Last night it was so excruciating I couldn't sleep. Finally, after Adam helped me with Reiki and massage, I muttered something about "dammit, taking drugs now" and got my two strongest prescriptions: Soma and Codeine/Tyenol. At 12:45, I swallowed them down with sea buckthorn oil to hide the taste and coffee to also mask the taste. I woke up again at 1:45 and there was some mild improvement, like some of the ice pickers had packed up and gone home. At 2:30, I glanced at the clock and realized that there were only a couple of little sharp, shocking stabs here and there around my nose and cheeks and skull, and I could live with that. I didn't even hear Adam's alarm at 7:30. I slept straight through until noon. Rose lay herself on my torso and nibbled my cheeks and jaw and licked me. Then I fell out of bed using the cane nearby, took my necessary pills (pharmaceutical and supplement) with that amazing cold-brew coffee with almost no acidity, took a long very hot shower, took more Soma and Codeine with Klonopin, stretched very very gently, and realized I would be okay to look at a computer screen for a couple hours at a time. Good.

I always knew it would get much worse and that I would fall so hard. But at this point, I don't even notice. The feathers are heavy but soft.
brightlotusmoon: (Snow White Makeup)
Ah, yes. Welcome to cerebral palsy with spasticity and hypertonia, combined with full blown fibromyalgia flaring.

I am typing very very slowly with two fingers, sometimes more, as my hands unfreeze and unclench and attempt to loosen with the help of Soma and stretching. Everything is so so painful.

Earlier, Adam came back from errands with four pounds of crab claws for dinner. After over one hour of cracking and manipulating the legs to get my own two pounds meat, I felt my body begin to clench, spasm, tighten, and lock so quickly that I began having difficulties even with speech. My hands clenched, fingers clawed; my elbows and knees locked at a bent angle. Raynaud's Disease hit my fingers and toes. My tongue and throat muscles began to spasm, which, while fairly normal to me, might probably alarm people unused to it. I had to repeat words, stutter wildly, and pause frequently to get simple words out. I cried mainly because of the pain and frustration, and conveyed to Adam that he should probably wash dishes. He told me to sit and rest and that he would take care of everything; after all, he was around for my advantage. I staggered my way upstairs to take the Soma pill, do some healing stretches, and engage in deep breathing. My bent elbows gave me some slight advantage in slowly changing my shirt. I maneuvered back downstairs and managed to scoop the cat litter, again slowly.
I am now on the couch feeling the effects of the Soma spread, feeling individual muscles begin to loosen and unclench and relax, like a bodywide sigh and breath, like a deep physical meditative release. The sciatic nerve is still shocking me a little, but it is getting a little better. I don't know where I would be without the Soma right now.

I could talk more about what happens to me when the severe hypertonia floods me, but my hands are getting tired. If anyone has questions, I would be happy to answer them.
brightlotusmoon: (Fae Dragon Alien)
I am more coherent. I'm going to take a nap. I will watch the repeat Doctor Who Christmas episode at midnight. I am so tired and in so much pain. Of course. Seizures paired with attacks of fibromyalgia and hypertonia via cerebral palsy are naturally never fun or interesting except on a neuroscientific basis.
brightlotusmoon: (Default)
Also, everything still hurts so hideously that the pain has still gone from "ten" to "indescribable" to "Lovecraftian." And also I recently had a small seizure that involved some sort of sobbing similar to the cries of a wounded young kitten. I wish I remembered more, but there were only colors full of dark, and more pain, and there was howling in the abyss, and there was a woman holding me and singing until I came awake. Probably my inner pain guide creation, Serena; she's good like that.

I really must sleep.
I really must stop hurting first.
One will happen before the other, of course. Eventually.

Other things:
On our way back to Gaithersburg, the car broke down eighty miles from home, in Aberdeen Maryland near Bel Air. Adam managed to coast to the shoulder on I-95 and guessed that the transmission or possibly the torque converter had died or failed. After several desperate calls, we wound up calling Triple A, signing up, and waiting for a tow truck. The plan was to get towed to the local mechanic, have Billy meet us there with the SUV, and then pack everything into the SUV so we could get it all home. It all went well. Adam has tomorrow and Monday and Tuesday off, thankfully. The mechanic, Bill, won't be available until Monday, which means that Adam may need to borrow a vehicle from his boss for a few days, unless Bill can fix the problem quickly. We can pay for a new transmission if needed, and we can even try to buy another used car if it desperately comes to that, but Cloud is a such good car - a 1999 Ford Taurus station wagon with very few miles - and we don't want to give her up. Come Monday, we will learn her fate, and hopefully she will be fine. If not... sigh.

Other than that? My week was amazing. Spending all that time with my parents in their house full of art, made of art, breathing art, soaking up art... Dad gave us two of his older paintings from his 1970s surrealist period, plus a seahorse and oyster shell with a real pearl carved into dark slate. Everything was an extraordinary gift. My family's love is an extraordinary gift.
brightlotusmoon: (Default)
This sums up too many things for me. It shatters and heals my heart.
Thank you, Shinga.
http://shinga.deviantart.com/art/Into-Dust-326278238

The body sings in harmony with the brain since the beginning. And when the connections are shattered and the harmony is broken, the only thing left to do is write a new song, even if it takes until the end.

*I cannot sing. I cannot dance. But I can write. I can speak. I can dream. And I can fight.*


http://www.youtube.com/watch?v=aJ4RMyI90_o

I don't want to describe the pain today. I don't want to describe the seizures this morning. I cannot stop thinking about the dreams when I slept, the insomnia until four in the morning, the anxiety attack upon waking, the desperation to feel happy, the lack of appetite, the desire to feel comfort.

The best things about today:
All three cats surrounding me on the bed.
All three cats following me down to the living room, with Luna trilling, mewling, chirping, barking, begging for hugs.
Still being able to smile and be amused by Futurama and My Little Pony Friendship, which I think have been saving parts of my sanity.
My amazing husband calling from Las Vegas to tell me that he will be home a day early - tomorrow morning, in fact.

And so, I drink my superfruit smoothie, swallow my medications, perform my meditative magics, and try to mend my cracked rhythm for another day.
brightlotusmoon: (Default)
Oh, son of Ammit who devours the dead under the Scales of Justice in the Hall of Two Truths in the house of Osiris. I was absolutely not expecting such a ferocious migraine to burst into the fibromyalgia flare, take over the party, get the cerebral palsy hypertonia drunk, and sit back and wait for some random symptom to explode all over the place until my neuromuscular system and musculoskeletal system get scorched. I would maybe curse Anubis and Osiris under my breath, but hell no, I can't.
All I can do is treat it as best I can and wait for it to pass. And hope that nothing gets too insane, because screaming and sobbing makes my throat hurt.
Besides, I am already backing away and crawling toward the Greek pantheon, because oh my various gods and galaxies, I need to feel better soon or the screaming may happen. I am about to cry out for Apollo, Artemis, Asclepius, Aceso, Aegle, and the Moirai themselves, because this is hard to breathe through.

...anyway, I'm going to take some heavy medical drugs and curl up now with my penguin and dolphin Pillow Pets. And my three cats.

Also, I need to copy this Facebook comment that I wrote, because it explains a lot about my brain, and I need to remember:

*Well, Mom was atheist while Dad was agnostic until he started leaning more atheist. They actually did "celebrate" Christmas and Hannukah, mainly because their friends did, and they wanted to raise me with overall world religion knowledge. I grew up believing that the Abrahamic god was just like the Greek gods, Egyptian gods, etc. Fallible, human-like, silly, weird, touchable in ways, in no way above and beyond human comprehension.
In fact, in elementary school, a classmate asked me what religion I was, and I said "Um, American?" because I honestly didn't understand. When I came home, mom gave me a giant book on World Mythology and told me that I could figure out what I wanted to try. She then sat me down and explained all about Judaism, Christianity, Islam, polytheism, and other things like that. She told me that if I ever did choose a religion, that I should stay open-minded no matter what. Being six at the time, I said, "Well, I really like the Greek gods, but I think I wanna be agnostic. Is that okay?"
Then later, as a pre-teen and then teenager, I started having dreams featuring humanoid beings who identified themselves as various gods from the pantheons from Greece and Egypt. Given that my father's family was all Italian and Greek, that made sense, and my mother could trace her family history all the way to the Jews in Egypt, something like that. I did take the dreams seriously, because they really were that weird, but I figured that the so-called "gods" were interdimensional or cosmic entities. (I was always really big on science fiction and fantasy.)
So when I started college, I decided that eclectic paganism was the path for me, since it was a very personal kind of faith/belief. My mom is still skeptical of many things although she will admit to paranormal and supernatural stuff, and my father was accepted into the Freemasons (as his lodge's only stonemason) and just says he believes in an overall "God-like source" even though he's probably more of a pantheist. Me, I'm a polytheist polyagnostic pantheist eclectic pagan with a greco-roman concentration. But it was my childhood atheism that helped me figure things out. I'm grateful for it, because it helped show me how to see people and faith from a very specific perspective.
I've always said that if someone proved to me that one god/religion or another was completely true or completely false, I would shrug, say, "Okay" and go back to my business. I think Terry Pratchett said it best when Granny Weatherwax encountered Herne in the forest: Yes, I see you. Just because you exist does not mean I have to believe in you.
I also try to quote Sam's huge monologue from Neil Gaiman's "American Gods." I can believe in a LOT of things.*

A hot shower helped a little bit. Rubbing healing salve into my joints and muscles helped a little bit. I am typing with one finger on my right hand, assisted lethargically by one finger on my left hand. Said left hand is currently spastic and hemiparetic and burning and stupid. Also my left leg and the left side of my face is doing the same thing. I am used to that, but I wish I were not.
I will be going to bed soon. I wish things would stop hurting. My head is still spinning.

Somebody make me laugh, please? Jokes, cute pictures, funny stories, weird or crazy stories, whatever. I may not see comments until tomorrow, but it would be lovely to laugh.

I like things that make me laugh. No matter how much I hurt, I want to laugh.
Oh, fuck, this really hurts. Somebody help me joke about it.
brightlotusmoon: (Default)
Sigh.
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.
http://www.futurama-madhouse.net/scripts/3acv20.shtml

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)
FYI, creepy migraine all day, literally, because I did not wake up until close to 1:00 when husband gently shook me. I'd been having very odd dreams involving Minnesota and hotels and people vanishing and a young couple in love in Minnesota while the woman's mother lived in a hotel that vanished, and there was a magical eyeshadow that was deep shimmery pearly cobalt blue that turned into every color possible on the skin and it was used to paint the sky to bring the vanished people back, and then I was in New York searching for more eyeshadow to paint more of the sky, and the young couple had followed me and the woman gave me her pendant, a copper-wrapped kyanite stone the exact color of the eyeshadow. It enhanced the powers that saved the world, which I had already for some reason and forgot about; I am an amnesiac sorceress.
Now the only clear memories I have are of buying "Endlessly" by Kiersten White at Barnes And Noble, acquiring a blueberry bagel, sitting on Charlotte's couch, and using my cane to walk everywhere. I've finished the bagel, taken pain drugs, listened to things on YouTube, and am now letting Rose take over my lap. Talking is hard, typing is better.
When I feel better I will go through my cosmetics collection to look for random multi-toned eyeshadows.
Also, I actually have that kyanite pendant. Husband made it for me. It is also charged and powerful and etc. (It's this one.)
brightlotusmoon: (Default)
Congratulate me, friends, for I managed to walk from Twinbrook Metro to Congressional Plaza (10 minutes), buy two discounted 6-lb bags of dry cat food and some fish food and a couple of things on sale from Fresh Market, then slowly and painfully haul the tote bags back to Twinbrook (20 minutes because I kept stopping to rest), then slowly and painfully drag everything from the Shady Grove metro onto the Lakeforest bus and then to my bus stop.

But you know what was really awesome? One of my neighbors who got off the bus offered to carry the bags for me, because he had seen me around and knew I was lame, so I did not actually have to drag everything all the way home to my townhouse, which takes 5 minutes on a good day. I would have, too. I would have forced every muscle in my body, taking baby steps, dragging those bags step by shaky step. But I am so grateful for a helpful neighbor.

So, my punishment from my body has been violent shaking, spasticity, hypertonia, severe muscle aches, stabby pains, nerve twinges, and my body's deep profound physical unwillingness to do any more walking without a cane, even around the house.
But, hey, I am really proud of myself. I could have taken the easy way out: I could have made one trip, gone home, then made the second trip; or I could have called a friend to drive me. But, you know, I really do want to prove I can do these things even though I know I will pay for it severely.

So, um, I need to stop typing now, because my arms are shaking too much and my fingers keep spasming. I'm waiting for the Soma and codeine to kick in.
But... yay?
brightlotusmoon: (Default)
I'm not sure how it happened or why, probably something post-ictal, but... yeah, who the hell knows.
Early this morning, Adam and I were picked up by Charlotte and taken to our dentist for Adam's first tooth implant. After that, Charlotte took us back to Big Lots and bought me the memory foam bathroom mat I had been craving. Once we were home, Adam picked up his car from the auto shop nearby, where he had gotten an oil change among other fixings. Adam and Charlotte then went to work fixing our old dining chairs, making new cushions and spray painting the metal parts gold. I was feeling particularly sore and pained, fibro-flared and spastic and weak.

I went upstairs, to the laptop, did my usual online things like webcomics and blogs and research. Felt hideously fatigued and drained beyond description. Let myself fall back against the arm of the couch. The clock read 3:45 when I closed my eyes, just for a small nap. I opened my eyes, and the clock read 6:45. Stunned and confused, I scrambled to check all other clocks until I was assured that it was three hours later. How could I have slept on a couch arm for three straight hours? It felt like a seizure blackout. I might have even done things during said supposed sleep. I do that, sometimes. That's what the extra Klonopin is for.
Then again, no surprise.
I have been severely stressed, emotionally compromised, shocked and stunned, struck over and over by strange incredible waves of euphoria and relief and worry and confusion and elation and ecstasy and a sort of sick sensation. Waterfalls of shock and sensation and emotion pouring off me to pool around me, cracking and fragile and stripping me until I'm shivering. Over a year of waiting and fear and worry and uncertainty and insecurity and being outside my comfort zone too many times, stress and anxiety and terror and depression and gasps for thin air and nightmares and the abyss of the most unknown things waiting to swallow me. I don't remember things that I did a day before, or I run on pure impulse, instinct, and emotion. It may happen again once the disability money is in my account next month or the month after. I have never experienced this before. Those who have been there assure me that it is common and that I am definitely not alone. I am very glad for that. I want to cling. I have told my friends, "I may cling to you, I may beg you to tell me what to do." Having the thing that I've been fighting for is so huge that I can't see beyond my own hand right now. I am so small and this is so big. My doctors know. My lawyer knows. They will help me. They promised.
brightlotusmoon: (Default)
You know what is terribly ironic and ironically terrible? When most of the muscles in your body start relaxing and loosening, and you still hurt -- because being relaxed and loose is not really your body's natural state, because of a neuromuscular disability that includes hypertonia and because of a chronic pain condition, which can all cause permanent micro spasms in the muscles that you don't really notice until your body tries to relax, and then the pain just keeps going, but it's a wholly different kind of pain, an indescribable kind of shuddering agony, so while you are grateful that you are actually relaxing, you want to scream and sob because your body is loudly insisting that it is naturally supposed to be spastic and tense, and the throbbing pain is rushing through you so hard and fast you can barely breathe, because your body is sort of at war with itself.

(This may only make sense to those who have cerebral palsy and fibromyalgia together, or some other combination of spastic condition plus chronic pain. Raise your hand if that is you.)

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