brightlotusmoon: (Snow White Blood Red Light Pale)
So. Multiple friends have suggested I write something like this, because no matter how often I say it, I still get invalidated, scolded, told I shouldn't be doing it because it upsets people. And of course, it would be talking about my life, my disabilities, my personal health, in public forums.

To paraprhase a friend: "...taking someone's lived experiences as they apply to their particular disability and how it expresses itself, and saying that they can't talk about that because it will make other people feel bad, is not okay and it invalidates them to varying degrees. Different disabilities affect different people in different ways."

In other words, sometimes comparing things is bad. We are human. Humans all have problems. Each human has their own set of problems. Some humans want to talk about their personal problems in ways that other humans find annoying, upsetting, unsettling - but other humans find those ways comforting, eye-opening, powerful.

I don't know how else to say it, so I'll be blunt, and this time I am not going to pull any punches:
Read more... )
brightlotusmoon: (Asha)

A fantastic quote on feminism that I want to remember:

" Equalist as the replacement word sounds like an active, willing erasure of the specific problems faced by each of the marginalized groups in society. Each will have their own pitfalls and villains in the public eye, yet the approaches to solving the problems are unique to themselves. Erasing the various identities and struggles to homogenize them to allay the delicate sensibilities of people who don't want to be associate with the word "feminism" which had somehow become a bad thing in society, will not help matters at all. It's actually hurting our causes more to erase the specific problems and people from our awareness. And people can also be for equality when it comes to race or disability, but will have startling misogynistic views. Equalist only serves to placate the misogyny by implying that identifying with women's struggles is somehow beneath people."

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 Ruby Blood Dragon Witch Light)
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.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch)
Seizure happened in the kitchen. Jupiter meowed and rubbed against me while I crouched. Adam came in and gently lay me on the floor. My eyes were open and blank. Adam touched my face and reached for my mind, and I spasmed and gasped and blinked. I asked why I was on the floor. Adam helped me up and stood me against the large freezer. My memory is swirling. Alicia is holding me. Earlier, Adam said he told his boss, a fellow animal lover, that he needed an extra day to care for his wife. I rolled my eyes and said that was not necessary; that I was fine. Never mind. It was so dark and so white equally braided as order and chaos magics. I was spinning at ninety-nine percent light speed and thirty-five miles an hour. The world was elsewhere. A few seconds lasted a thousand years. Adam suggested I go upstairs and rest. Jupiter is suggesting a cuddle. I am thinking coffee and clonazepam and baclofen. I am made of light and love and pure order-chaos magic in its simplest form. I can give myself the right strength. May be that I can regenerate. As brightly and intensely as a Time Lord. I always shine enough for everyone.

brightlotusmoon: (Snow White Blood Red Light Pale)
My cats are so spoiled that we serve their gooshyfood on a white ceramic gold-rimmed plate. Luckily, all three will eat from the same plate, from a single can of moist food, and it's more supplemental, twice a week, to the free-feeding with organic or semi-organic dry food. We also shop at H-Mart for worldly produce and fresh well-kept meat. And we go to Whole Foods and Roots for goat cheese, wine, and my skin care if I don't order it online. Yes, we are poor semi-yuppies. We treat ourselves when we are financially able and live off the riches for a while.

So, I asked Adam to drive me to Petco for food because he had a car and was very strong. We decided to hit up Unleashed By Petco (also because the people there are just that cool).
I was going to buy another huge bag of Solid Gold, and then I got into a lengthy, intellectual conversation with a store associate named Amy. See, once I explained that what I wanted was nutritional density, we had a long talk, and on the way to the Solid Gold bag, I stopped and picked up of Blue Wilderness Duck Formula, and then we grabbed a bag of Solid Gold Indigo Moon. Amy read off the Analysis of both for comparison. And I realized that while Solid Gold was 15 pounds and Blue Wilderness was 12 pounds, Blue Wilderness was much more nutrient dense.
My cats already loved Blue Buffalo in general, and I'd fed them Wilderness once; and I realized that the main reason I'd been buying Solid Gold was because of the bag size. But, as Amy and I agreed, nutrient and nutritional density was more important than the weight of the food. There was a three pound weight difference... but Wilderness was packed with more intense nutrition, in my eyes.
Also, I picked up that 12 pound bag with no issues, and realized that if I were alone, I could walk with it all the way to Lake Forest Transit Center, which was a ten minute walk.
I also mentioned that I was shopping for canned food, and I knew they carried Soulistics, which I pronounced "solstice" - and that made Amy giggle wildly. "You pronounce it soulstice like I do! I keep messing up!" I chose the chicken pumpkin multi-can wrapped set. My cats go wild over Soulistics.
And while we were there, I decided to test out my weight limits on litter by picking up a 14 pound bag of World's Best Cat Litter and resting it on my right shoulder. I smiled at Adam and Amy, and realized that yes, if I absolutely had to, I could carry one or the other. Giant sells a very good brand called "Feline Favorite 100-percent All-Natural Clumping Cat Litter" which contains zeolite crystals - and according to their claim, a 10 pound back has the same volume has 50 pounds of clay litter (hah, we'll see about that).
But knowing that I could hit Giant for litter and Unleashed for food all by myself, back and forth by bus with my free ride Metro Access pass, made me realize that my independence as a disabled person is getting better all the time.
And those strength training exercises are probably helping, too.
brightlotusmoon: (Snow White Blood Red Light Pale)
You know, it is incredibly difficult to stare terror in the eye and snarl "No, you beast, I AM THE DRAGON" when you have no more hope or confidence or battle left in you.
Most chronic pain advocates describe pain and disability as the "destructive, sometimes evil dragon that must be fought." Fuck that. In this world, I am a blend of dragon and phoenix and whatever dragon they think wants to hurt me can scream it to my face; I will scream right back.
My reserves have been scraped clean. I need to rest. I have a high fever and can barely speak. And I just learned that my digital thermometer turns red and loud above 99.6. LOL. I am my own dragon. And this dragon needs to curl up on a pile of gold and copper and silver and gemstones and go the fuck to sleep before epilepsy dominates.
I am fine. I will be fine. Somehow I always turn out all right.
Until we meet again, warrior sisters and brothers.

Note: no makeup. Except lip balm and moisturizing lotion. But no fear. Not now. No time. Apologies to Body Dysmorphic Disorder.
brightlotusmoon: (Snow White Blood Red Light Pale)
A song for Rose kitten.

Maybe I didn't pet you
Quite as good as I should have.
Maybe I didn't brush you
Quite as often as I should have, oh.
Little treats I could have found and gave
I just never remembered the time
You were always on my lap
You were always on my lap

Tell me that your sweet paws haven't dug in
Give me, give me one more chance to stand up
To stop you mashy pawing, pawing.
Maybe I didn't hug you
All those interrupting times
And I guess I never told you
I'm still happy that you're mine.
If I made you feel second best,
Kitty, I'm sorry I call the other cat my precious.

You were always on my lap
You were always on my lap

Now please get down off my lap
Now please get down off my lap

You are always on my bed
You are always on my bed.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
Especially for [ profile] naamah_darling

Here is a post for questions about my Healthy Multiplicity, and the three (now potentially four) female people/entities who inhabit my brain and help me cope with all my various vast disabilities and illnesses.
This is also a post for others to discuss their own.

-Serena: The first known guide, who guides me through all and every pain, tension, emotion, and fear, who is my inner nurse.
-Alicia: The second known guide, who guides me through epilepsy and postictal states, who is my inner mage.
-Amara: The mysterious third guide with me from birth, only recently human, who guides me through overall brain damages, memory problems, cracks in the walls, neuronal crumbling.
-Amber: the previously silent, hidden fourth guide who acts as a preserver of my sanity, who seems to catch me when I fall so deeply I fear entrapment, who deflects darker energies and turns negative into positive.

Disclaimer: This is not a case of DID, which is a very, very specific disorder. My girls do not leave my mind to use my body and voice, although there have been very rare postictal states in which Serena has spoken through me when I was fully incapacitated; however, I was still myself, just unable to articulate until she lent her voice.
Healthy Multiplicity is extremely common in perfectly healthy people. It is often seen as a form of coping mechanism for many disabled people, who need to sometimes retreat into their creative minds to preserve themselves, to soothe their mental conditions, to know that they are able and capable and strong. Because sometimes, being reassured by loved ones falls hollow, and you know your own mind well enough, and your own mind knows you well enough.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
My music of choice is still Dance, Trance, Electronica, Atmospheric, SynthPop, Psychedelic rock, Progressive Rock, Folk, World Music, Alternative Rock. (The 400 channels on Xfinity are awesome. I can't dance worth a damn and refuse to truly dance in front of people, but when I am alone, I will rock out, spin, shake, and jump, and dream of being athletic and extreme enough to really fucking move the way my body never can nor will.)
My first musical love will always be 1980s rock and 1980s metal.

My least favorite music genres are still jazz, doo wop, rap and hip hop, and country western. If friends are happily listening, I will be happy with them, but none of it will ever be for me.

I once tried to dance in front of some of my best friends, my husband, and some very close friends. I was so embarrassed afterward that I ran to the house and buried myself in a pillow. I didn't care that everyone applauded and told me how gorgeous I was. To me, it was horrible. I will not dance for anyone but myself and my imaginary friends. It is all I need.

I discovered the magic of Teenage Mutant Ninja Turtles when I was nine years old through the first cartoon. Of course, I didn't discover the original comics until two years later, but magic is magic, right? And I was writing fanfiction before I knew what fanfiction was.
And with writing stories always must come soundtracks. Mine, of course, were 1980s rock, metal, hair bands, and synth rock. Oh yes.

As a tween, teen, and adolescent, I was always moved by fast, strong music. It is why those least favorite genres are least favorite. They are too slow, not intense enough. How can I write or daydream a good ninja fight scene to country or jazz? And those genres of music never clicked for me regardless. I needed power songs. I needed extremity. Even today, as I approach my mid thirties, my dreams still turn to Ninja Turtles, and to electronica, dance, alternative rock, trance, electro-industrial. When I write stories, the novel, mini stories... always hard music, fast music, music that can follow chase scenes in science fiction films. Tangerine Dream? Ian Van Dahl? Paul Van Dyk? Paul Oakenfold? Daft Punk? Hans Zimmer? Oh, yes. And of course, Blade Runner was a breakthrough for me as a child. That score was magic.

I write this while listening to Channel 404 and Chanell 434 on Comcast Xfinity: The Dance/Electronica Music Channel and The Pulse Channel. Nothing but, all day, all night. Sometimes I break from writing to get up and dance, or at least flail and kick randomly as my muscles spasm and go through paresis randomly. Sometimes parts of my temporal lobe are so affected that I start sobbing. Some types of song, particularly dubstep, are difficult. Like the ones that repeat and repeat. Some types irritate my temporal lobes so badly that I risk seizures or migraines or sensory processing disorder overload or synesthesia overload.
But most of the time it never matters. I just go, and flow, and move, and cry, and spin, and shake, and wave, and lose myself. And then I sit back down, still lost in it all, and I write and write and write, and no wonder I produced hundreds and hundreds of stories in my teen years. A serious shame I threw them out, all of them, all those TMNT fanfictions. I could have stripped them for current stories. They were full of angst and emotion, but they were full of music and rhythm and power and force.
So much power. So much life.

People like to tell me, "Stop using the word CAN'T. Of course you can do everything. Just because you have disabilities doesn't mean..." Oh, sorry, I stopped paying attention. My parents know. There are things I simply CAN'T do. As a fact. Physical neurological, neurochemical, biological, neuromuscular. What I CAN do is compensate. Compromise. Find ways around those things. Find my own ways of doing those things, ways that fit me in the best ways. I know many disability advocates love to paste on wide smiles and plaster Just Say Yes or I Can Do Anything campaigns on anything. That is not me. I know what I CAN and CANNOT do. I own that. I take pride it that. Screw you, I'm going to do those anythings a different way, and it will be my way, because it has to be.
And I will have soundtracks. Fast and furious and dystopian magic light filled soundtracks stronger than I can ever be and able to keep pushing me forward.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
I keep reading about the "friendzone" thing... and all I can think is, "Wait, what's wrong with having friends? Sex and sexuality isn't supposed to be a manipulation. People can be asexual, already committed, gay, exes who are friends, not sexually interested, simply happy with the company. You know, friends."
To quote a friend: "There seems to be a bizarre implication that if two non-related people of opposite genders know each other and aren't having sex or being sexually attracted, someone is being unfairly and horribly infringed upon somehow."

People are weird, in that annoying bad way. Like, the world does not work the way you want. People will not shower you with attention if you are being nasty and throwing tantrums. Shrieking about "being friendzoned" is like a toddler whining that he can't have that toy he wants. Except worse, because this is a real person, with real feelings, being objectified. I don't know. I am ranting. I am hurting and I am a wounded wildcat and I had a seizure yesterday and I am still sorting all my brains out.

Point is, there are online friends who claim to be attracted to me despite knowing my marital status, and that is deeply annoying.
brightlotusmoon: (Snow White Blood Red Warrior)
Someone asked. I forget.
The reason I always have moisturizing balms and creams everywhere I go is because my skin is very dry and sensitive and requires moisture, and not in the sense of petroleum or mineral oil (Vaseline, Chapstick); because that feels disgusting and also feels like plastic wrap on my skin. The lips cannot produce sebum on their own; they have no sebaceous glands. They need constant hydration. It is impossible to become "addicted to lip balm" - however, if one is constantly applying petroleum-based lip balms, they are not sufficiently hydrating the lips and skin, thus fueling the myth of lip balm addiction. Petroleum is an emollient that seals in moisture, but if there is no moisture to begin with, then the petroleum is useless. The idea is to use balms containing vegetable oils, plant oils, botanical oils, beeswax or flower wax. If those balms also contain petroleum/petrolatum, that is fine. An ideal blend would be snow white petrolatum and coconut oil or jojoba oil or shea butter. Blistex and Carmex and even Chapstick have some balms with such nourishing features. The point is, no matter the skin type, hydration and nourishment must happen.
Oily skin actually is dehydrated skin. Not dry - dehydrated. Too much sebum is produced at once, leading to constant, chronic dehydration of the deeper skin layers. Believe it or not, oils are the best solution, as they soak up and dissolve excess sebum. Coconut, grapeseed, olive, macadamia, rosehip, hazelnut, pumpkin, jojoba, shea, cocoa, camellia, flaxseed, hempseed, sesame, tamanu, and other vegetable oils, nut oils, and fruit oils are perfect for this.
Skin myths and rumors abound. Be aware of the facts. No matter the skin type, hydration and nourishment must happen, even if you insist you do not need it. If you must use petroleum based lotions and creams, they should only be applied, if at all, after the application of botanical oils, to seal in that hydration.
When in doubt or on a tight budget: grapeseed oil, olive oil, and coconut oil from a grocery store will do perfectly. In fact, coconut alone is incredibly nourishing and healing. It is highly antioxidant alongside grapeseed; ideal for acne prone skin, rosacea, oily and combination skin, and of course dry and sensitive skin; even scars and bruises will benefit. A tub of solid extra virgin coconut oil will last months; and no, it will not smell like artificial suntan oil. Coconut oil, along with cocoa butter and unrefined shea butter, is one of the original perfect all-around healing, antioxidant, anti-aging moisturizers. Honey, as well, can be carefully blended with coconut oil or grapeseed oil to create a blemish battling ointment, as honey contains various anti-microbial properties. Honey plus cinnamon, dabbed on a pimple of any kind, will help shrink and heal the pimple within days.
In conclusion: Do not neglect your lips. Licking them will not help. Using plain Chapstick will not moisturize them alone. Look for pure, unrefined oils and butters such as coconut, grapeseed, olive, shea, cocoa, pumpkin, flax, hemp, borage, camellia... you get the idea. The price will be worth it, and your skin will be quite grateful.

And now, I am going to bed.
brightlotusmoon: (Fae Dragon Alien)
A conversation that just happened:
Me: You know... I just realized. In the past several days, no matter what has been happening, I've been forgetting that it is Christmas tomorrow. And I just don't care.
Adam: *smiling*
Me: I mean, like... spiritually? Not like foodening and socializing and such? But in essence. I just realized... I just don't give a fuck that it's Christmas. I'm happy to hang out with people who celebrate it, and eat the foods, you know, like seven fishes and roast meats and pumpkin pie and whatever, and to socialize and hang out and chat and be merry. But Christmas is the one and only holiday I truly do not care about in a spiritual essential way. Isn't that funny?
Adam: Honey... you never have.
Me: ...oh. Right.
Adam: Just pretend it's a second Thanksgiving!
Me: Yeah! I can do that!

Because, you know, we have been making pumpkin pies and other foods to bring to C.'s house for the "traditional Christmas Day dinnering" and such. And I just kept... drawing blanks. I knew we were doing something big on that day. But I had already had Saturnalia and Solstice and Yule, with Solstice gifting and giving, and my brain went, "Wait, there's another one? Shit, what's that? Oh! Is that what all this music and shopping is about?" And this is the first year my brain has done that actively. This is the first year I have actually, actively realized how little Christmas means to me on an essential, spiritual, level. On a social level, it's a day to hang out with friends and family with food and drink. Like most holidays. And I don't even feel weird about it. Although I do feel weird that I feel weird about it...
brightlotusmoon: (Fae Dragon Alien)
Oh, and we made our usual cookies with chocolate chips and goji berries, but with this batch we added moringa powder and bee pollen. It didn't change the taste but it it increased the superpower food power.

Note for self. Yup, the Biotin and Inositol supplements are working beautifully. My hair is almost down to my bra strap. My plan is to grow it close to my waist by this time next year. 20,000 mcg Biotin plus 1300 mg Inositol, every day. Also, the Inositol helps with anxiety attacks and the Biotin helps with cellular growth. Adding in Sea Buckthorn and Moringa is doing so many wonderful things for my skin, especially the eczema, xeroderma, itching, redness, flakiness, and sensitivity.

OMG, you guys... Inositol plus Passionflower does unbelievable things to anxiety attacks, for me anyway. I am so relieved. I can breathe, oh yes.

I truly don't care what anyone says. The proper pharmaceutical drugs in the proper dosages in the proper combinations help me feel as wonderful and painless and fantastic as I possibly can for a few blessed hours in a body and brain that will never feel that thing most people call "normal". Close enough.

Dear polytheists: How many of you are hard, how many of you are soft, and how many of you are medium?
See, I consider myself a medium polytheist. To me, gods and other deities have separate individual personalities, but still all connect to one massive incomprehensible source from which all gods are born.
(I once had a discussion about this with a monotheist who kept trying to call that source "
God" even though I tried to explain that in my mind, the monotheistic god is included in the billions of deities connected to that source. The universe is bigger than any god anywhere, anyway, and also prettier.)
Neil Gaiman made a good point in "American Gods" - that there are various incarnations of every god all over the world and throughout time and space.
So, in the book I've been writing, the specific incarnation of Gaia that the protagonists meet is also connected to modern incarnations of other goddesses from other pantheons. I'm wondering if I can fit quantum theory into all this.

I have this natural habit: whenever someone verbally attacks me, I just smile, nod, and say "Okay!" It drives them crazy. It is hard to fight calm. Apparently, it is one of my strengths. I just don't have the energy or time to argue.

"She walks in beauty, like the night
Of cloudless climes and starry skies;
And all that's best of dark and bright
Meet in her aspect and her eyes:
Thus mellow'd to that tender light
Which heaven to gaudy day denies.
One shade the more, one ray the less,
Had half impaired the nameless grace
Which waves in every raven tress,
Or softly lightens o'er her face;
Where thoughts serenely sweet express
How pure, how dear their dwelling-place.
And on that cheek, and o'er that brow,
So soft, so calm, yet eloquent,
The smiles that win, the tints that glow,
But tell of days in goodness spent,
A mind at peace with all below,
A heart whose love is innocent!"
A fellow witch once quoted this at me, about me. I smiled and thanked him and felt quite happy. But even now, years later, I still don't believe in my real self...

I want to be this...

brightlotusmoon: (Peaceful Dragon model 4)
Well, I have been wearing the back brace for hours, I have practiced varied stretches and exercises, I have taken Ultram and Soma... and of course I hurt. I always hurt. I have accepted this so easily. Because it will not change. No matter what anyone tells me.

I do not want to hear people telling me I am or will be normal. Normal is not in my life. Not anyone else's normal. I am a disabled person - excuse me, a 'person with disabilities' (sigh) and I have chronic illness, and chronic pain, and that is that. I treat it. I remedy it. The word 'cure' is far far away from my related vocabulary. If you know me, please leave it be, unless you have discovered something so absolutely powerful and new and wonderful that I absolutely desperately must try it.

Thirty-three years as of April. I have never been normal or okay or cured. And I have never wanted to be normal or okay or cured. I only want to be who I am. I am Joanna, who is a writer, a very short woman, a disabled person with at least two dozen disabilities and illnesses, a person who loves cats, a polytheist polyagnostic pantheistic eclectic pagan who talks to nature like a friend.

Some disabled people advocate for not allowing disabilities to 'define' them or 'be part of them' - and I have realized that my disabilities and illnesses are such an intense part of what affects my life that they may as well define at least part of me. I am a person. And I am disabled. I am a disabled person. And you know what?

At least for now I do not want to put my personhood before my disability status because I am exhausted by so much screaming social justice in every nook, cranny, and corner. We cannot say this, we must say that. Oh, we would offend those people whom we are not part of. There are allies, there are advocates, and then there are those of us who are actually affected. And some of us just don't care.

People are people, they will always be people.

But I am not going to trip over my tongue, which is just one of the many many muscles affected by cerebral palsy, trying to politely say "I am a person who has multiple disabilities and chronic illnesses" when I can just say "I am disabled and chronically ill." Look. Everyone else can say what they wish about themselves. I am disabled, a cripple, a gimp, lame, weak, incapacitated, mentally ill, neurologically ill, crazy. I will not use those words to describe anyone but myself. I will not be offended if I am called one of those words. Whatever. You know? I know who and what I am, and I am fine with that. (Although I do not like the word 'retarded' being used in place of 'stupid', not at all. It means 'stunted growth' and that is how it should remain. So, you know, stop doing that.)
But lame? I'm fine with being called lame. Weak, unbalanced, slow. Sure. That is what it means. But privately,

I really believe that some people are getting too wrapped up in all this vocabulary attached to ableism and such. Social prejudice is... very, very tricky. Full of eggshells. But if you are not sure if something you say is ableist... you could always ask.

I have no idea why I typed all of that. But I have been told, over and over, to be 'more PC' about my own personal disabilities. Fuck that. I'm a fucking crazy lame spastic cripple. You are not those things, (probably), and please be proud of that. I would never call you that (unless you want me to, who knows, maybe you do? I'm not in your head and you are not in my head).
(Example: I call myself lame, and someone screams, "Oh my god, that's ableist!" and I calmly reply, "I'm permanently disabled and actually literally lame, because one leg is shorter, and I limp, so whatever." And they shut the fuck up, because what else can they say?)

So I suppose my point is that my mind is mine, my body is mine, my disabilities and illnesses are mine. And they have nothing to do with what sort of words you want to to use to describe me.

So. Thank you? I guess?
brightlotusmoon: (Pixie Model 2)
I feel so weird wearing opaque neutral pure pink lipstick. I'm so used to rich, dark, deep, neutral to warm reds with undertones of pink and rose and berry and brown. You know, like blood, or fake blood used in vampire films (I own shades called Fire Down Below, Shanghai Express, Flamenco, Stiletto Red, Super Star, Hot Mama, Va Va Voom, Italian Ice, Red Zin, Temptress, Chanteuse, Pretty Woman, Cherry Twist).
Well, daring is as daring does, right? (Duchess)
brightlotusmoon: (Pixie Model 3)
Still fucked up, crappy, reclusive, snarling, burning with electric pain, etc.

To quote a good friend:
"I've been doing okay, but it's like... I just get my feet under me, and something else knocks me over, and then it takes me forever to get up again. And, frustratingly, embarrassingly, it doesn't take much to unbalance me.
People say not to let your illness define who you are, and I agree with that, but often there's no letting about it. It does dictate what you are able and are not able to do. Even when you are able to do more, that's the illness letting up. So a very large part of my frustration is born of being unable to be the person I desperately wish I was."

No arguments, on that, please. I cannot right now. I just... I am too tired and snarly. I was born damaged, I grew up damaged, my damage got worse in my adulthood... I'm not going to pretend I am made of roses and kittens and songbirds. I am a cripple. I am disabled. I am fucked up. I am I AM. Primary to that, I am Joanna, a writer, a reader, a sensitive, a weird nerd with geek properties, a polytheist polyagnostic pantheist pagan who agrees with all the skeptics because everything is true because we have High Brains mashed with Subconscious Brains that work to make Quantum Psychic Brains, and I know I can't prove a damn thing but I don't care if I can't, because I know things and I don't care if my skeptics doubt me.
If I "pray" to my Quantum Psychic Brain that created gods and spirits to fit my needs, so be it. If my "prayers" to my Quantum Psychic Brain are mostly about treating and healing my horrible terrible chronic pains, so be it.

I am who I am. And you know what? My disabilities really are part of that. Other cripples may argue, and I will let them. Nobody ever is the same, and why should they be? I am Joanna the Peaceful Dragon Warrior Princess of the Mediterranean, full of disability, and I. Am. Proud. My spears and swords are raised high.
And that is all I will say for now.



brightlotusmoon: (Pixie Model 5)
It seems that the names of all my favorite lipcolors seem to fit me in some way:

Bare Minerals: Italian Ice, Passion Fruit, Red Zin, Courage
It Cosmetics: Pretty Woman, Love Story
Revlon: Red Velvet, Cherry Tart
Sally Hansen: Cherry Twist, Berry Blend
Nars: Shanghai Express, Flamenco, Fire Down Below
Too Faced: Stiletto Red, I Want Candy
Aveda: Cherrybud, Maracuja, Ginger Lily
Salma Hayek Nuance: Passion Pink, Paprika

(Also, that list is mostly to remind myself of what lip products I own and regularly use.)
brightlotusmoon: (Default)
I am caught between that place of "Want to sleep" and "Cannot fall asleep" because of Pain Stuff and Not Pain Stuff. Who else is in that place? Want to have a quiet simple party until we fall over?

If Soma, Tramadol, Klonopin, Flexeril, Zoloft, and Trileptal were people, I would want to dance with them in all sorts of ways and then fall into a bed and snuggle in a pile like kittens or puppies.

Dear Body: You make me want to cry all the time. But I usually find things to laugh at, so then my crying turns to laughing often enough.

Oh, my sweet cats. Luna was hiding under the TV bureau because of the ferocious thunder and rain storm, so I was comforting her with Greenies treats and duck jerky. Rose and Jupiter got treats too, of course, and they are still climbing all over my couch for comfort.

"The cybernetic oracle. The ultimate man-machine hybrid. Programmed with every crime ever recorded and implanted with the brain cells of history's greatest detectives. We call him... Pickles."
"On account of it's like he's floating in a jar?"
Dear Futurama: Please continue to make me laugh no matter what. I will even forgive you for the episode 'Attack Of The Killer App' if you continue to make me love you.

So, I stand corrected on the issue of whether or not "douchebag" should still be an insult, which was brought up recently by a group who wanted the word stripped from the list of insults.
Here's what a friend suggested:
"Actually, douches are useless at best, and harmful more often than not, ruining the natural environment by upsetting the PH. So I think they're the perfect insult."
I wanted to go with "walking colostomy bag" since it applies to all bodies.
Oh, and this: "FYI, enemas are also referred to as douches, so yes, they also service assholes."
I love these discussions.

"Wait, how can you be a D?? That must mean I'm like a J or something!" "That can't be real! You don't look that big! You're probably a B maybe a C at most. Are you sure you're a 32D??"
Thank you, everyone, for telling me what my bra size should and should not be.
Cough. Sorry, but I get that a lot. You know, because my bra size actually fits me now. How dare I be a 32D at 4'10" when "taller women with D cup bras look so much bigger." Etc.

Oh, my mind is in a very interesting place. Mostly because it wants to get away from my pains and such, I guess.
brightlotusmoon: (Default)
The other day, at Big Lots, I found some amazing hairbrushes made from amazing wood with pneumatic ionic cushions; I bought the one with metal bristles because there weren't many others and I already have several wood bristle brushes. But the part that really fascinated me was the model they used on the packaging. The product brand is Donnamax Nakamichi Japan, and all the products in that line seem to use the same model: Dark hair, light eyes, golden complexion, full pouty lips, square jawline, strong cheekbones... I can't stop staring. I think I'm in lust. Or something. One of those "I want to look that good damn it and also I want to kiss her and touch her until our heads spin" feelings. Envy? Who knows. I have no idea who she is, but she is ethereally beautiful to me.

Still in a depressive downswing, working with it. Very fatigued. Waiting for the energizing supplements to kick in. I love you, Royal Jelly and CoQ10 and Alpha Lipoic Acid and Moringa and Sea Buckthorn and Cha De Bugre.


brightlotusmoon: (Default)

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