The Return To Innocence

Good news: I have personal anecdotal evidence that at least six grams of Inositol powder per day have seriously curbed symptoms of multiple anxiety disorders, OCD, and ADHD-Inattentive Type. It will take a few months to really see major effects, but combined with the new Cymbalta, the therapeutic inositol is a good thing for me. For ME. Mom sent me the inositol powder she had because she said it was too sweet. It's been replacing sugar in my coffee for a few weeks now. Besides, you need more inositol if you drink coffee.
http://www.integrativepsychmd.com/articles1/inositol

I'm almost recovered from this respiratory virus thing. Using Mucinex D has helped, although I'll be happy to no longer need it. I miss free deep independent breathing. Not even these qigong exercises work enough. But that is what modern medicine is for. And holistic medicine for balancing support. *drinks more Fenugreek honey tea with mangosteen powder*

The fibromyalgia flare that has plagued me for a full month is still in full strength, but I feel like I am too used to it. I wonder if that's a bad thing.

I see my general physician tomorrow anyway: We were planning on discussing my new positive relationship with Cymbalta and its amelioration of my worst episodes of OCD, ADHD, panic disorder, and nightmares. But mentioning something to kill a virus is a good idea as well. And the next day is my monthly pain specialist appointment. I plan on talking about the canned oxygen treatments I've been taking.

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.

So, in my cerebral palsy support group on Facebook, someone posted asking about all the other conditions we all have that may and may not be related to cerebral palsy. I commented quickly in a very instinctual pattern, then realized that a part of my brain must have been saving it up in a fantastic pattern. I think this at least two dozen things.

Spastic and ataxic cerebral palsy... plus: epilepsy, autism, fibromyalgia, sciatica, asthma, hypersensitivity, sensory processing disorder, migraine disorder, anxiety, unipolar depression, chondromalacia patella, disorded spatial perception problems and depth perception problems, TMJ, lordosis, dyscalculia, OCD, ADHD-inattentive, anorexia recovery, light bladder leakage, seasonal allergies, sleep disorders, extreme myopia, chronic lumber back pain, eczema, panic attacks, generalized joint pain, generalized nerve pain.

They look like nothing but words. Words and labels. But they are identity bits. They are definition bits. I am not like people who are so adamant about not letting disabilities define them. Or take over their lives. Or whatever the latest platitude is. I know damn fucking well that chronic medical conditions are not the big thing in my life, not the main definition, not a thing I allow to control me. In fact, it is insulting to know that people assume that. However, look at that bunch of words. That bunch of words means things, to me and all my doctors and all my specialists and all my therapists and all my -path doctors. When I went in for physical therapy earlier this week, I listed every single thing because the guy asked me to, because neurology and psychiatry is interconnected with physiology in so many ways. People who are not involved with medical science or medicine in general love to assume I am lazy, that all I think about is being "sick" and that all I want to talk about is my medical health. I wish I were as telepathic and clairvoyant as they are. And also, fuck them. See, in cerebral palsy, spastic hypertonia alone can cause a disabled body to automatically, instinctively expend three to four times more energy than a regular normal able body. And see, in fibromyalgia, chronic muscle fatigue alone can cause a disabled body to automatically, instinctively expend five to six times more energy than a regular normal able body. I am terrible at math, but at least I can figure out the mechanics of physical energy output during basic everyday tasks, like walking. I could legitimately literally say that it is not my fault that I get extremely exhausted, fiercely fatigued very quickly during any task. I could say that and it would be absolute truth. But to most able-bodied folks, it would be another excuse.
I'm just writing this to tell them to fuck off. It isn't easy to "just ignore those idiots" as supportive folks like to say. Words wear you down, like storms against stone. But the more I remind myself that those detractors can fuck off, the better I feel about my life.

Seriously, though. This toothbrush containing edible gold, bought at H-Mart, made in Korea, seems to really do something. I've taken colloidal gold before. It was good to my teeth. The toothbrush, with nothing but herbal powder, actually seems to make my teeth feel clean, smooth, and hell, even detoxified. I don't even know if that can be a thing. I used it dry a few times and got the same sensation. DeoLife toothbrushes. Gold, bamboo charcoal, silver. I get the silver and the charcoal, those are famous for being antibacterial and such. The one with the gold calls itself detoxifying, removing plaque build-up easily. I am skeptical, but there seems to be some interesting evidence. My teeth are certainly whiter.

So, "Orphan Black" is still awesome. "Black Box" is still interesting despite possibly turning into a "magical mentally ill doctor always saves the day" stereotype. I mean, I really need to see more than these first two episodes, and I hate that a mere two episodes in it is already being torn by critics. But I mean, it's like watching my life in an alternate reality. What if I were a neuroscientist, dealing with my own neurodivergence and mental illnesses, able to help my patients precisely because I could connect to them on such a specific level... I need to keep having faith in the show, except for how Catherine doesn't want her fellow doctors to know she is bipolar, even though they probably wouldn't give a shit. Like, the boss was saying that any doctors with medical conditions needed to report them, since that one surgeon with the brain tumor had a seizure during a brain surgery and became suicidal. I realize that my disabilities and invisible illnesses are my private business. But if I were a specialist working in a hospital, in charge of brains, I might understand that my supervisors might want to know about my specific mental illnesses, you know, in case I had an episode. I don't know. I find Dr Black a bit untrustworthy with her addiction to her mania. I realize she has wanted to keep her bipolar private for her own Reasons. But I don't think that is helping anyone, least of all her daughter. I mean, there is a teenager involved, who is already displaying symptoms of her own. Does Catherine really need to stay under that radar if it might cause damage to her kid?
Thoughts, anybody?

Also, this is something I wrote on Facebook and might as well copy here.

***
http://chaoslife.findchaos.com/aging-agility
Perhaps I should attempt this "Max Capacity" exercise thing they describe in the comments. So far, kundalini has done nothing for my joints, but I am a smidge looser, so. As I told a friend, I am maintaining a broad sense of humor. Spastic hypertonia plus ataxia equals falling over and bruising myself. Which must be laughed at. Lest I go mad. But, you know, I learned something very important: Now that I have made the very personal decision to do a very specific type of yoga on my own, with no suggestions from anyone, I feel that I can better combat health zealots.

Speaking of, I so called it: A commenter posted this: "Not to be a bother but… If you did a little more exercise… I mean, there are 80 year old people that can do a perfect arch, so the age is just an excuse to do not do anything!"

Ahh, health preachers. Everyone knows what's best for you, and obviously you cannot think for yourself. It's like partisan politics, but way more personal. One side wants to be a coddling Mommy, one side wants to be a strict Daddy, one side wants to be a weird Uncle, nobody wants to actually help you without taking something for themselves. It's fun to sit back and watch, though.

And you know what, guys? I am actually going to ask for yoga advice. Specifically, though, regarding kundalini. I need suggestions for very light, gentle stretches that are good for osteoarthritic knees and hips. In particular, the ligaments are ridiculously tight due to palsy, and they keep tightening back up after any kind of exercise.

You see, I have been having intense dreams in which so much pain has been concentrated in my knees that dream me is often unable to stand and walk without screaming violently, both within and outside the dreams. It has gotten to a certain point in which I start lucid dreaming and become afraid that I cannot change the dream pain. I become afraid in the dream of moving in certain ways. In my dreams, all my fears and anxieties and obsessions are released, naturally, and not even using my cane eases them. It never helps that nobody notices, not unless they are unknown dream people. Too many dreams have taunted me about my friends not seeing these struggles, being too far away, requiring me to walk helplessly until I find relief.
A couple of dreams ago, I was in northern Brooklyn, trying to reach my childhood neighborhood of Midwood, along Kings Highway in southern Brooklyn. No taxi would take me after sundown, and this I was forced to walk and walk, and it did not get better. I had no magic powers. The dream people around me could only walk with me and talk to me.
The dream abruptly dropped me in a Metro station in which the escalators and elevators were broken. It may have been Wheaton, which has the longest escalators in the Western hemisphere.That is indeed a nightmare. For anybody, anywhere, regardless of health. Fitting that it would be in my dreams.

Back on topic: I would love advice on how to apply physical and emotional exercise to my unconscious mind.
However, please do not tell me to stop taking traditional medical treatments. Please do not bash my pharmaceutical medications, since they actively help my symptoms. If you want to see what type of supplements I take that are anti-inflammatory and joint supporting, check my Notes section for a post that lists all my medicine before making a supplement suggestion. Chances are that unless it is an extremely obscure herb, or an unusual TCM medicine, I have tried it.
Eh. I'll post that medication list.
https://www.facebook.com/notes/joanna-capello-paul/take-all-the-pills/10151028056823107
***

I cannot say I am well. Am I ever truly well? I mean, the only reason I consistently talk about symptoms is to remind others that we can work with all of this crap. Many of my dear fellow chronically ill cripples want to keep their posts sharing pain to a minimum, which I support, respect, and understand - because, really, it's the same thing day after day. I think the main reason I'm a frequent updater is because I get so many questions, so many please for help, so many requests for advice and suggestions and just words of love. And those things, I can give.

Also I think I may be in a depression episode. It's taken a couple of weeks to realize that. It's so... light. So subtle. Huh.

So. Other things...

http://juststimming.wordpress.com/2012/05/01/truth-is/
"What if being cured didn’t fix those things?
Because ultimately, if I took a cure, I’d be surrendering. Instead of fighting for my right to be treated and valued as a human being regardless of disability, I’d be letting go, giving in, and letting myself be changed into someone easier, someone acceptable, someone convenient. And I want to be clear– there is nothing wrong with wanting things to be easier or wanting to feel safe or accepted or just being done fighting. That just means that you’ve been asked to be much, much stronger than everyone else for much, much too long.
But if, in order to be safe I have to stop being me?
Then I’m really not safe at all."

http://erinmccolecupp.com/2014/05/01/blogging-against-disablism/
"We are prone to feeling defeated because it’s a battle just to get our muscles to move us out of bed every day, so telling us to “be more positive” in the face of that is kind of insulting."

Sensory Processing Disorder. Cerebral Palsy. Temporal Lobe Epilepsy. ADHD-Inattentive. Major Depressive Disorder. Multiple Anxiety Disorders. Autism. Fibromyalgia. Chronic Stress Disorder. Hypersensitivity. Spastic Hypertonia. Migraine Disorder. Chronic headaches. Chondromalacia. Sleep Disorders. Dyscalculia. Sciatica. Chronic Back Pain. Lordosis. Rhinitis. Asthma. Recovering Anorexia.
Oh, absolutely. Being told to "be more positive" is indeed kind of insulting.

My mom keeps telling me that I've fixated too much on being autistic, on advocating, on activism. She suggested that I just BE. I'll take it.

Sooo... that hard fall I took yesterday outside the medical buildings? It turns out it was a little worse than I thought. This displeases me. Both legs, hips, knees, and the general lower back is stiff, bruised, burning, throbbing, stabby, and eurgh. And somehow, my fingers feel as though they've been slashed from the inside. I don't understand that part. So I've been doing sciatica hamstring stretches, like my favorite butterfly stretch, hot showers yada yada. You know, the personalized modified NotYoga basic poses that might be basic Baby Pilates. I really did not expect it.

It was just a slip and fall onto a grassy sidewalk, I said. I was wearing layers and carrying a cane, I said. It wasn't so awful, I said. What the fuck is this, I now say.

So, right. Last night, I dreamed that I was on a beach being attacked by a creature that slashed me to ribbons before canon characters from "Lost Girl" arrived (I know, facepalm). I was still an airmed Light Fae (pronounced "awr-meed"), my OC, so I healed well enough, but I remember Bo and Dyson holding me tight trying to staunch the blood flow while Trick guided Kenzi through some sort of incantation, I don't know. I just remember falling asleep in Bo's arms. And I woke up in actual life, in my bed, feeling exactly like my dream self. The sciatica in my right leg was so intense that I stretched for hours without leaving the bed. I couldn't move my fingers very well. I don't even know. (Also, Doctor Lauren wasn't there because I dislike Lauren :p)

So right now, neither leg works well and it is really hard to limp with two stiff legs. The remaining Soma, which will not be refilled, will be taken until the bottle is empty, and then the increased Baclofen will take over. I will continue to stretch and apply massage and heat, because fucking sciatica. Also, during the night my back kept spasming so hard that I had to separate "CP spasm" from "complex partial seizure" since those seizures tend to send warning signals to my spine for some reason. It may have been both. Chronic stress, after all. Banging head on wall. All these little things, I swear. I'm clenching my fists. It hurts. I want to scream.

The ridiculous part of this is that it was just a simple trip, slip, and fall on a grassy sidewalk. And yet my entire body has decided that it was a Big Deal. *side-eye*

I have friends battling various cancers, severe diabetes, multiple sclerosis, diseases with a potential death sentence. They're trying to stay low and not pain-brag or talk about their symptoms. I admire their strength. I admire how we all handle our own illnesses in our own way. I just... I cannot stop feeling the need to talk, even if it's just about those little things. Because I know people want to know. I want to tell people I am here, and they are not alone.

So... there is that whole thing about "I am having a medical depression episode, I am medically anxious, I am in severe a chronic pain fibromyalgia flare that rates an 8 on Allie Brosh's pain scale, my spasticity is out of control, my hypertonia along with ataxia is interfering with my ability to balance, I'm very dizzy, I'm in a mental fog, I keep thinking of how Rose-kitten died and I start getting choked up, my joints ache and throb so much that I want to become a cyborg right now..."

And I got back from a shopping trip to Barnes&Noble and Target. And Adam picked out a beautiful autumn/spring coat with purple/rose/yellow/brown patterns I never would have considered and it was gorgeous on me and on massive clearance, and Adam himself found a perfect back-up backpack on massive clearance. And I found several new books I've wanted to read including a new Amber Benson book and a new supernatural suburban fantasy series, plus a Pinkie Pie doll from the company Aurora, the same kind that sells Fluttershy on Amazon, with soft simple fabric for hair that was perfect for cats to play with.

And I spoke cheerfully and joyfully with strangers, smiling so much that my disguise and my mask strengthened, and I knew that I could make it through as long as the medications held up, the Soma and Klonopin and Ultram and Vinpocetine and Picamilon and MSM and Vitamin D and Guarana and coffee. People asked me where I got my gold-colored cane and why I had it... and were honestly intrigued to ask about the cerebral palsy, no condescending remarks, no inspiration porn, just requests for details and honest educated understanding. And I was happy to educate, explain, enlighten, and watch their faces light up as they thanked me sincerely and walked off with more information, and that is all I want from things like that.

And the medicines did as promised, and I came home and fell down by choice, and as a wise, wise woman with a PhD told me, It Is Okay To Not Be Okay.

I am not okay. And that is okay. Eventually, I will be okay.

Some quotes I would like to share on trauma and living with illness, disability, life after trauma:

1. "Healing is seasonal, not linear.
It is true that healing happens with time. But in the recovery wilderness, emotional healing looks less like a line and more like a wobbly figure-8. It’s perfectly common to get stuck in one stage for months, only to jump to another end entirely … only to find yourself back in the same old mud again next year.
Recovery lasts a long, long time. Expect seasons."

2. "Whatever doesn’t kill you …
In 2011, after a publically humiliating year, comedian Conan O’Brien gave students at Dartmouth College the following warning:
"Nietzsche famously said, 'Whatever doesn’t kill you makes you stronger.' … What he failed to stress is that it almost kills you.”
Odd things show up after a serious loss and creep into every corner of life: insatiable anxiety in places that used to bring you joy, detachment or frustration towards your closest companions, a deep distrust of love or presence or vulnerability.
There will be days when you feel like a quivering, cowardly shell of yourself, when despair yawns as a terrible chasm, when fear paralyzes any chance for pleasure. This is just a fight that has to be won, over and over and over again.
… Doesn’t kill you.
Living through trauma may teach you resilience. It may help sustain you and others in times of crisis down the road. It may prompt humility. It may make for deeper seasons of joy. It may even make you stronger.
It also may not.
In the end, the hope of life after trauma is simply that you have life after trauma. The days, in their weird and varied richness, go on. So will you."

I chose these quotes because I have heard, over and over and over, "Oh, just get over it. Slap a bandage on it and walk it off. Are you still going on about that thing? It was years ago! Aren't you on medication and in therapy? Shouldn't you be past all that by now? Stop thinking about it so much; you're just making it worse. You're creating negativity in your own spiritual space. Negative emotions and negative thinking will destroy your immune system, you know. Stop stressing so much. I give up! You're hopeless! I can't even talk to you! You're a broken record! You're just making it worse. Why won't you listen to me? Every time you talk about getting worse, your mind and your body really believe it. Get over it! Think positively! Change your attitude! Do what I did! I quit thinking so much about the pain and trauma, and in a few months I was cured. I really think you need more positive thinking. You're bringing yourself down."

And the reason I have merely smiled, nodded, and replied, over and over, "Thank you; I shall consider that!" is because those people don't want to listen anymore, they just want me to stop talking, even though I just want to confide. And so I stopped confiding in them. It was a drain on my energy and time and it just made them irritated at me.

The point is that there is no straight line when it comes to trauma, pain, illness, damage, and negative life events. Some people will never seek treatment, and will continue to live in a post-traumatic stress cycle complete with angry outbursts, emotional breakdowns, and paranoia over things such as medical treatments. There is nothing I can do but be there, even if it is just as a voice to soothe, a hand to hold, a joke to tell, a distraction to offer.

But for me, everything is a cycle. I will never be free. I acknowledge that my entire life, literally, is, was, and will be about recovering from trauma. I have tools to work with. I have doctors who understand me. I have taken all my medical problems on with my own personal arsenal, and I know better than any of the people who dislike my methods how to work with, on, and despite myself. I have my girls, my spirit guardians, my coping mechanisms with human faces, the parts of my brain formed from fictional characters that allow me to handle different parts of my trauma. And so I keep going. Trauma is a part of my life. And that is okay.

I had so much amazing sushi it was amazing. I watched with amusement as one friend requested lobster miso and got, literally, a bowl of miso with a lobster claw in it... in the shell, and no tools save for chopsticks. I wanted more sushi, and they let me have more sushi because I fucking could, oh my gods, even the waitress was impressed.
I walked around a shopping area at night with friends and I didn't have a cane and it was all fine, and I socialized easily with four good good people, and when I woke up in the late morning, I hurt so badly that the only way I could get out of bed and walk anywhere, say, to the bathroom, was to put myself back into a half-asleep state.

And then... then, I got asked to weigh in on a discussion about how "our organic bodies must learn to heal themselves without medicine blah blah blah" and I was too tired to give a smackdown, so I just warned that HOLY NAKED CATS CHRONIC ILLNESS AND DISABILITY DOESN'T WORK LIKE THAT YOU ETERNALLY FLOATING-HEAD HIPPIE WANNABE. Never tell someone who needs certain medications to function to just quit those medications, or you will have to deal with some very, very irritated cripples.
Like, HI, this drug here, synthetically derived from that plant over there, is saving my life, and fuck you. Yes, yes, the medical community likes to "push" drugs and all, but sometimes those drugs keep people alive, so seriously shut your rainbow-dribbling mouth.
I have spent over a decade writing essays and blog posts about this, starting from that floating head holistic hippie phase of Only Supplements and Essential Oils and Meditation, to Okay This Requires a Chemical Drug So I Don't Die But Can I Still Take The Supplements to Goddammit I'm Just Going To Balance Holistics, Botanicals, and Pharmaceuticals forever.
And the next person to use the words "poison" and "Harmacy" in conversation with me will be threatened with getting hidden completely if not blocked from my forum feeds. Because I really am a serious holistic and scientific advocate for various healing plants and botanicals. I am a shaman in training. But chemicals come from various places. And sometimes, the chemicals extracted by scientists have a better effect than the pure volatile chemicals.
You think side effects from FDA drugs are bad? Eat a whole plant and spend a few hours writhing in hallucinatory agony. And GUESS WHAT: some people never even get bad side effects. Trileptal. Zoloft. Baclofen. Soma. Tramadol. Codeine. Klonopin. Guess what? I'M NOT A FUCKING ZOMBIE. Guess what else? I AM BETTER THAN I HAVE BEEN. So you know what? Float on. The cloud are gorgeous up there.
But my body cannot organically heal itself, sorry. If you're on of those people who like to say, "I'm not against pharmaceutical drugs at all, but have you ever considered just letting your body work on itself naturally?" You will be met with raucous laughter that would make the Joker question my sanity.
I have been dealing with this since my early twenties. I'm gone through the ENTIRE gamut of medicines after being raised literally on vitamins and homeopathy and various therapies and acupuncture. I will not claim to be an expert. But I've had life experience.
So hey, if you're going to cheerfully toss out a casual, callous thought about how someone shouldn't take a pill anymore and see what happens, you really don't know. You don't know. And this is why I try to go out there and help educate, advocate and activist. Because if I don't, people will remain head-floating.
I was once head-floating, and it was a good high while it lasted. This is why many of my friends are scientists, medical doctors, medical students, researchers, etc. I ask a lot of questions. Because I never want to be that head-floaty again.

Anyway. I applied a cream with special oils to my chakra points on my feet, palms, and ears, and my forehead. I took my "harmaceutical" drugs. I stretched. I did acupressure. I meditated. I did my personal compensated form of qigong (of which yoga is only a small part, so don't bother), I recited various phrases to relax myself and let my darker emotions drain away.

In conclusion: If I specifically as for opinions about something incredibly specific, I ask that people stick to that topic. Unlike my friend's post, which was derailed by a hippie wannabe who happily invalidated everyone by insisting that all we need is our own organic body to be healed. Sorry, friend. I hope that drug is going to work well for you! I've never tried it, as I haven't needed it. But I'm happy to help with research.

Anyway. Sushi makes things better. Lots and lots of sushi. Lots. Sushi.

Some random rambling about my own mind, my imaginary friends, and how my mind likes to invent coping mechanisms that talk back.

One of my imaginary friends, Amara, who is the human coping mechanism in charge of all the neurochemical, neurodevelopmental fuctions, has been interacting with me more and more ever since Alicia (the epilepsy mechanism) and Serena (the pain, fatigue, psychological, neurobiological functions) urged her to show herself more often after I fell into a chemical depression with severe anxiety. Serena and Koan could only do so much.

Amara, at the beginning of her creation, was not even human; formless and elemental. These days, she is human shaped but she loves to take bits of my writerbrain as inspiration. Her ears are pointed and her eyes and hair change color with her moods. She likes to mimic my bone structure and basic figure shape, just with more muscle intensity. Serena says it's because Amara wants to show me that I am beautiful.
Also, when I saw a Google image painting of a woman with elf ears and a unicorn horn, posing with a unicorn, Amara insisted I make it my current Facebook cover photo. She made herself up to resemble like that character while still mimicking my features, including the horn that represents the third eye - just with chestnut brown streaks in her white-lavender hair and honey brown flecks in her intense blue eyes... although none of that is her true coloring. When she made herself human, her coloring randomly became alabaster skin, gold eyes, and pale flame hair, essentially inhuman. But she kept the mirror shape of my skeletal structure and body shape. She even plumped her lips, made her eyes bigger, and made her nose smaller, because she knew I desired that. It makes me smile, which I think she likes. She wears the same jewelry as me, the same clothing colors, the same makeup colors. She is determined to "reboot" the parts of my brain that are having trouble accepting the recent flooding overload of information about these disabilities and chronic illnesses. The name Amara means everlasting, eternal, immortal... which is why she was formless and elemental to begin with. I finally understand why I created her. And she wouldn't mind being the inspiration for any stories I write. I'm grateful for that.
She insists that my jaw, hair, and eyes resemble the jaw, hair, and eyes of Elena Risteska from Macedonia, which I agreed with and humbly accept with a simple thanks. The only way I even knew about Miss Risteska was through searching for shades of brown.
http://upload.wikimedia.org/wikipedia/commons/e/e2/Elena_risteska.JPG
http://img27.fansshare.com/pic34/w/elena-risteska/1200/12861_elena_risteska.jpg
http://userserve-ak.last.fm/serve/_/18051115/Elena+Risteska+elena+r.jpg
https://fbcdn-sphotos-e-a.akamaihd.net/hphotos-ak-ash3/p480x480/578088_479387062121006_1822646409_n.jpg
http://img27.fansshare.com/pic34/w/elena-risteska/1200/12858_elena_risteska.jpg
http://tekstovi-pesama.com/g_img2/1/e/28986/elena%2520risteska-10.jpg
She just wants me to feel better, to feel my own positive human emotions. Since Amara is still learning about humanity, she looks to Serena for help. In my dreams, they have amazing conversations.
I'm so glad I created these characters. They help keep me sane, emotionally stable, intellectually stable, and psychically curious. Also, every time I meditate and concentrate on my third eye, I actually feel a short unicorn horn on my forehead.
https://scontent-b-lga.xx.fbcdn.net/hphotos-frc3/1469926_10151743304270684_204893984_n.jpg
I just love that my own mind is creative enough to make up whole people with entire personalities, back stories, individual appearances, individual likes and dislikes, and actual behaviors. They mainly come to me in sleep dreams, daydreams, and meditations. My psychotherapist adores the fact that they exist, which relieves me. It's just one of those things that I, Joanna, have in my brain to help me handle all the stuff that life gives me. Awesome.

Words, and words. My life is all about words.

"Honestly, I kind of get the impression that for the first twenty-something, thirty-something years of your life, this wasn't a thing you were able/allowed to talk about, and what's happening now is a flood of FINALLY being able to talk about it, FINALLY getting in touch with people who have similar neurophysio profiles and can relate to you, FINALLY being able to put all of your thoughts and feelings on the table and figure out what this actually means for you. Of course you're focused on it: you've got mountains of stuff to sort through. I think it's hard for other people to get what this really IS because it's such an intensely personal process. So they make assumptions, instead."
-My friend Sarah, commenting on how/why I keep going on about medical issues affecting me.

I don't want to talk anymore. But I cannot stop writing. My Livejournal is being filled and filled. I need to have a record, after all. I just want to avoid pain-bragging. I just want to stay clinical and curious. I just want to be able to realize every single tiny thing about every part of everything that damages me without going overboard, without making people angry. I am learning. It took a cinderblock punch in the amygdala to make me realize, but I have realized.

To quote the Tenth Doctor: I'm sorry. I'm so, so sorry.

Orange juice:
http://hyperboleandahalf.blogspot.com/2013/05/depression-part-two.html

I often "cross post" between here and Facebook, since sometimes stuff I say there, in increments, can be transferred here as stories and ruminations.

Lately, I've been getting genuinely angry at many Facebook friends and acquaintances - and it takes a fucking lot to make me genuinely angry. Multiple people on my Feed have been reading and watching the internet and talk show versions of medical conspiracy theories and tabloids - technincally slightly true, definitely not completely true. "So, these doctors on this daytime talk show or YouTube segment or extremely biased blog are saying that almost every serious health problem in America can be linked to pharmaceutical drugs or the side effects from those drugs. So, have fun taking those deadly dangerous pills! I'm going to be all smug and condescending because I don't take any pills at all even though I probably should for medical conditions I refuse to talk about."

Have you ever had a triggering of your rage gag reflex? Not quite retching, but a mental version of "I am about to explode rage all over this!" because something has truly, severely pissed you off. That has been me over the last couple of days. Some very very intelligent friends have been reposting these ridiculous claims, and my response is usually double facepalm and "For fuck's sake, take everything you read and hear on these blogs and talk shows with grains of salt, please, please, please." Like... okay, I like watching the Doctor Oz show every now and then. Quite often, he is extremely insightful, helpful, and correct. But he is also trying to get high ratings. Same for that talk show The Doctors. Who also used to be Oprah's friends. A panel of four core doctors from different specialties talking about medical breakthroughs, things that are good and bad for you, et cetera. Apparently, a recent episode featured the ER physician claiming that pharmaceutical drug side effects were causing most of the country's medical problems. At which point I facepalmed, went online to trusted websites, and proved him essentially wrong with a few keystrokes. It turns out that after the episode aired, multiple physicians and specialists who were not mere ER doctors called bullshit and blasted the episode and the hosts for being irresponsible. Again, ratings ratings ratings. But so many Facebook friends are falling for it that I wound up "hiding" their posts because I was getting seriously insulted. Funny that this happened after I made a status post about how grateful I was for the pharmaceutical drugs I've been taking to help mitigate my conditions.

Look, pharmaceutical drugs are not the Best Things Ever. They have serious side effects for many people. They alter the body and brain in ways that can be more damaging than the conditions they are treating. BUT. For millions of people, they are lifesaving. They have treated the symptoms of thousands of crippling diseases successfully. For many patients, they are the only options, because holistic medicines, supplements, and alternative therapies haven't worked for those patients (and of course, holistic medicine is either The Best Only Medicine Ever or Quackery Placebo Bullshit). So, to say something like "I heard from a TV doctor that pharmaceutical drugs are the main cause of most medical problems" and to follow it up with a slap in the face like "Good luck taking your pills, guys!" is... a slap in the face. Especially if that doctor was being paid to exaggerate findings or to promote some sort of media, to gain readers or viewers. And especially if the people repeating these claims hadn't seen a doctor themselves in years due to lack of opportunity, fear, hatred, or simple mistrust of doctors - which makes me laugh my ass off. "I don't trust doctors, doctors have never made me feel better, but this one doctor said this thing and I believe it completely and so should you!" It is one thing to drink the Kool-Aid. It is another thing to splash the plastic cup of Kool-Aid in my face.

You know, this is why doctors practice medicine. Practice, not master. It is a practice. Many many times, they get things wrong. Doctors are not perfect. Nobody is perfect. Not even you. So, dear Facebook people, please double check your facts, get second opinions, and actually think about it before you quote what sounds like medical conspiracy theories.

In the meantime, I'm going to sit back, smile, watch silly cat videos, and take my evil pharmaceuticals and my quack herbal supplements that are all maliciously working wonderfully to effectively relieve the worst symptoms of my twenty separate medical conditions. Damn them! *nods*

Also, in May I have my first appointment with a licensed craniosacral therapist. Having had craniosacral therapy twice, with extraordinary results, I am eagerly anticipating this.