brightlotusmoon: (Pixie Model 2)
Hello from the LJ user formerly known as BrightRoseFox.
Due to a complex thingy involving problems with emails and such, I have changed my LJ name, my yahoo name, and my gmail name.
Everything is now BrightLotusMoon.
If you know me well enough, you know why I am now BrightLotusMoon.
So, yeah. Just FYI.

Also.
Dear Lovelies:
Not only am I feeling so much better, I truly believe I am worth everything that people say I am. I've been getting messages, emails, phone calls, and comments from friends who have told me what I mean to them. I've been amazed and heartened and lifted and joyous.
I may be a moonlight witch, but I can't access the magic of the moon without accessing the magic of the sun. And the moon is always there, her power full constantly.
I feel bright and powerful and in full bloom, like a great lotus blossom beneath the full moon.
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)
Photos of nude women being people.
http://www.themilitantbaker.com/2014/08/expose-shedding-light-on-collective.html
In fact, I could see many of these being models for my mother's art classes.

Eyes!

Mar. 5th, 2015 03:17 pm
brightlotusmoon: (Asha)

Adam and I went to the local America's Best Eyewear places so Adam could get new not-scratched glasses. And while he was getting his eye exam, I asked about one for myself. See, that place always has a "sale" that does two frames, any frames, for $70 that comes with  free eye exam. Of course, the lenses are not included, and depending on your prescription and if you want Transitions, it can run up to $250. And if you only do the eye exam, it's $70. So while chatting with the receptionists, I filled out a form and scheduled an appointment for the 13th, right after I get my disability payment. I could probably put this into my medical expenses for next year.
When I consider the overall deal compared to getting glasses from Zenni Optical website, it basically comes out the same. One pair of online glasses, frame plus prescription lens plus tints, costs me almost $60.

I could just get the $70 eye exam during my appointment and then go online for two pairs of glasses for around less than $120. Going to the store and getting the exam, two frames, and lenses, would cost somewhere around $270 due to my insanely high prescription,. I've already seen two frames I adore, though.

I've got some time to think.

brightlotusmoon: (Asha)
So, today is Day Of Mourning for disabled people murdered by caregivers and parents. And I found this, and oh gods.
http://autism-memorial.livejournal.com/
That is too many like me dead.
brightlotusmoon: (Asha)
Leonard Nimoy is dead. I am crying.
1425074092681

An article explains how the fervor and insanity over the "ugly Tumblr dress" can compare to sensory processing difficulty in autism. And every autistic goes "NO SHIT."

And a very powerful article about the dangers of Autism Speaks makes me cry again.
http://theautismwars.blogspot.com/2015/02/kudzu-autimspeaks10-autism-wars.html?m=1
brightlotusmoon: (Asha)
http://www.buzzfeed.com/virginiahughes/autistic-people-spark-twitter-fight-against-autism-speaks
LOL, when trolling works well for a good cause, it is fabulous.
So, recently, someone I've known online for years pissed me off- and I held my tongue for personal reasons- by writing something along the lines of "I don't think you're autistic. You didn't used to act like it and you still don't. Weren't you just always high functioning and now less so?" And I found a really good quote that could've been a cool comeback. Thanks, Buzzfeed comment section!

"Functioning labels are a social construct, they are also offensive - and by offensive we mean oppressive and prejudice - we're all Autistic, it's a spectrum condition so it effects us differently and to different severity which can change throughout our lives. You're making assumptions about someones functioning based on personal judgement, and dismissing the voice of Autistic people based on your prejudice."

What matters is how it actually truly does change over time. It was suspected within me when I was a child in the 1980s, but I spoke fluently and powerfully and I was a very sociable huggy feely girl, thus barely fitting the stereotype of that time, ditto in the 1990s and the 2000s. As an adult, my brain kept changing and altering, and my autistic tendencies were spotted prominently by people who knew, who understood, autistic people and doctors trained well. I was able to stop calling myself abnormally weird. I was able to realize that having a name for a thing - and a community, full of new friends - was one of the best medically important moments since I was able to give a name to epilepsy and then fibromyalgia, names of things that got powerful and honest attention.

Over the years as autism and autistics became more studied, details changed. Which is what I think bothered people like the person who wrote me. "How can it still be autism they keep changing it over the years?" people ask. "If it changes, what's the point of a spectrum?" they ask. I dunno. I might ask that of anything in life, really. Everything tends to flow in severity and function over time, whether it is few years or a few days. I didn't just pop up autistic, regardless of what anti-vaxxers insist. Autistic folk everywhere who never realized they were #ActuallyAutistic are just figuring themselves out, and I think my online friend and many others have been genuinely startled by the idea that even the details of diagnosis and spectrum itself are changing. What do my Actually Autistic friends say?
brightlotusmoon: (Asha)

I have been snacking on whole fresh mozzarella cheese, salami slices, and roasted almonds, along with apple slice smeared with cashew butter. Good stuff. When Adam comes home from work, we'll eat the eggplant parmigiano that has been soaking for two days.

In the medical science community, there is a slow push to make chronic fatigue syndrome an actual disease as well as fibromyalgia. This may at least help them take us more seriously.
All I know is that Cymbalta is doing lovely things, surprisingly. After adding Rhodiola Rosea and Garcinia Cambogia, which gently boost dopamine and serotonin, I feel better. Still in a depression episode, still having anxiety blackouts and transient global amnesiac episodes. Buuut it's better. It doesn't seem any bettet since it all began in 2011. But I can feel things happening. It's all qualia anyway. All subjective.  I can never tell anyone to be me anyway.

brightlotusmoon: (Asha)
Quotes to repost to blog:

Also, in addition to being a really fecking stupid idea, trying to discourage the use of labels is an utterly futile one. Referring to definable concepts using words is human nature. Centuries of biological and cultural evolution has created a species that NAMES things. It is among our most fundamental psychological drives. We are the species of science and of literature; of identification and expression. We are Pan narrans, the Storytelling Chimpanzee. Verbal communication is OURS, as a field, like hardiness belongs to the cockroaches and swimming belongs to the fish. Our species is too intimately tied to the concept to back out now. When one encounters a concept that has no name, it is hard-to-impossible for a human being to avoid naming it, if only in the privacy of their own head. Labels are not only part of how we communicate, they are part of how we think. I see a chair, my brain says “chair”. I see that someone is upset, my brain says “upset”. It is difficult to efficiently think about something that does not have a name, and even more difficult to do so without resorting to making one up. Have you ever actually sat down and tried to find and list lexical gaps in your own language? It is nigh-impossible to do so without noticing two things: firstly, that there is very little that we don’t yet have a word for, and secondly, that our instinctive reaction upon identifying such a lacuna is to think “This thing totally SHOULD have a name.” So it has been since not long after we first developed what would later be labelled “sapience”. To oppose the use of verbal labels is to declare oneself to be a glitch in human development; an evolutionary throwback to those wordless days when Homo sapiens wasn’t yet capable of living up to its own name.
Basically, if you actually used words, made out of letters, to type a statement of opposition towards the concept of labels, then your argument is invalid and you have already lost.

I care because of all the time I spent lost in the wilderness, thinking something was missing. I care because of all the time I spent looking at other people and seeing that I was fundamentally different than them, thinking something must be broken inside me. I care because of all the time I spent not knowing where I fit in the world, thinking that I must not fit anywhere.

I care because I don’t want anyone else to go through what I went through.

I have a place now. I have a name for me.

I’m not broken anymore.

I can’t make you understand what it’s like to go through that, but I can tell you that it brings tears to my eyes when I think about how many questioning people in the asexual tag I’ve helped to realize that yes, actually, they are asexual, and no, that’s not a bad thing, and yes, that’s a real orientation and yes, it’s okay to describe yourself that way. People are confused and hurting, and they need to hear that their experiences are legitimate. If a simple label can help, then so be it.

If you have a problem with people affixing words to themselves as a means of reassurance and consolation, then you can shove it. Your opinion is irrelevant. Every other set of people who uses some label — don’t need to justify their choices to you. They owe you no explanation. And yet the internet is littered with explanations if you know how to find them, because people like you are so numerous that they’re compelled to write everything from snippets to essays to articulate what you failed to figure out on your own.

Why is it even necessary for them to explain to you, hm? Why do you need to hear it in the first place? Why do you want to stop us from making ourselves feel a little better after being ground under the heel of normativity? Here’s an idea: instead of asking why they think it’s “necessary” to label themselves, ask yourself why you object to it. And for Pete’s sake, don’t give me that “limiting yourself” crap.

Ah, man, so many people have so many issues with labels and it doesn’t make sense that they do. Most of the time, I feel that people have angst with labels because they don’t want to admit that the shoe fits, like people who dislike the word “bisexual” but prefer to be “heteroflexible” which is just another label to describe being bisexual but with some sort of difference (which is really no difference).

I ‘preach’ to people that without labels, we would be unable to identify the world around us – and it’s necessary and vital to our existence that we do this – we can’t function without labels and, as such, all we need to do is know what they are, how they’re applied, stuff like that, and just get on with our lives. But, we also know that words have power and that some words can be used as weapons and to attack each other at the most personal of levels… and all because of the ages-old mentality of “if you’re not with us, you’re against us” and that habit we have of wanting to destroy that which is not like us.

Labels don’t upset me because they can only have that kind of power if I allow it – I choose not to allow it and I can’t really understand why other people choose to give them this kind of negative power.

Humans!

Feb. 8th, 2015 09:33 pm
brightlotusmoon: (Asha)
And yet and yet, people still say things like
"How can you be in a depression episode again? Isn't your medication and therapy supposed to be working?"
"So, what caused it? Did you get upset at a news story?"
"Are you sure it's depression? Maybe you're just sad."
"What did you do this time to cause it?"
"I thought that new medicine was supposed to make it all go away."
"You know, lots of people get depressed. I hear exercise and sunlight work best."
"Hey, you're laughing! I guess you feel fine now. You should laugh more to cure yourself."
And yet and yet, I still want to smack those people when they continue to just not get it.
brightlotusmoon: (Asha)

Copied from a comment I left on Facebook. During a discussion regarding how cerebral palsy might or might not be seen socially as an active disability that impacts a person's social or professional life
***

I am medically disabled.
I'll be medically disabled and socially disabled even when society makes everything accessible and easier to navigate.
My disabilities are part of me forever because of my brain being abnormal and different from the average. I'm cool with that.
I don't want to fight or struggle or handwave against it. Disability is a part of Joanna Me, just like shortness and writerbrain and cat loving an writing paranormal urban fantasy with future elements.
It is one definition of Joanna Me but it is not the biggest. It gives me powerful insight into my world and the world around me. It's like a friend woven into my neurology. However, there are much stronger definitions to show.
Being disabled and having a disability are often unconnected depending on how the person feels. Hence the disconnect between medical model and social model. Cerebral palsy is medical, but social depends on how society is able to make room.
If someone wants to see my disabilities first, that's cool, as long as they see the rest of me too.
I identify as disabled. One of my disabilities is cerebral palsy. It is a result of congenital  brain damage. I will always be brain damaged. I will always be disabled. That is fine by me. I embrace being disabled while having a disability.
The End.









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)
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.
brightlotusmoon: (Asha)

Hello, walking pneumonia,  it's been a long time.
Grump. Adam has shaken it off like a wet dog thanks to his supreme immune system. Me? BAHAHAHA NO. Grump. The virus teamed up with the fibromyalgia, spasticity, ataxia, epilepsy, and autistic comorbids. Adam couldn't get how I was too weak to lift a slice of beloved New York pizza to mouth unless I drank whole milk just for calories. It was hunger, viral illness, disabilities, chronic illnesses, altogether now. I'm eating slowly as much as possible now. My go to safe food during hunger fatigues is always dairy, since it saved my life in college, and it's been long debunked that dairy products make the body produce  more mucus. Second safety food is nut butter like cashew and almond, or peanut butter. Yesterday's sandwich of  smooth cashew butter with lingonberry preserves on multi grain bread was divine.

I'm super cold. My temperature is so low, I'm a brown dwarf. Husband's joke, he's the astronomy nerd. While I agree that I may not have enough mass to trigger internal combustion yet, the neuro-psychiatric chemicals and neurons running around the inferior parietal lobe are making jokes about how "less mass is the whole point lolz" and excuse me, I need kick my brain in the insula now.

Current encouraging meal: yellow rice mixed with crema, mushroom, and crumbled bacon. Really really encouraging flavor.

(Seriously, my basal temperature hovers around 98.3 normaly. Right now it's at 97.2... Husband is always amused that I rarely create my chi flow after meals. He's a furnace, instantly beginning metabolic burn so intense that he projects heat. Me? My core is cold. My chi might as well be ice. Since I do work a little with chakras and basic reiki, I know how often my solar plexus chakra is partially blocked. Weird thing is that the few times I did healing touch on friends, they mentioned that i projected cooling energy, like a burn being soothed or a soft autumn breeze.

I will see if I can start my metabolism furnace more quickly. Also, velvet cardigan!

brightlotusmoon: (Asha)
I forgot to come back here after the new year. Sorry, journal. I was busy.

Today, and yesterday, and the day before, I've been... I guess it's ill with a cold, or a cold and allergies? It seems to vary. Obviously, a fibromyalgia flare has been set off. I've been dizzy, shaky, sore, with a scratchy throat, itchy eyes, runny or stuffy nose, yada yada. If it keeps going past a few days, I'll call allergies.

At the end of December, Adam and I began talking honestly about my Neuroweird, and he figured I might do well on an ADHD drug or similar, which made me consider SNRIs, which made me recall my first attempt at Cymbalta in 2002 that went wrong, which made me decide, after talks with three doctors and my insurance, to go back on Cymbalta in place of Zoloft, to see if an SNRI would do better at poking away at my Neuroweird. In combination with the personal therapy regime that will be slowly happening for probably ever, it is working. Most of my compulsive episodes have been very controlled. It is hard work, obviously. Everything is hard work. Sometimes we who have multiple intense chronic illnesses forget to mention how hard it is to just... be. Every day, all the time. Or people who don't understand might forget how hard it is. Not having episodes of... All The Issues, it's hard.
Cough.
Anyway.
Maybe I just forget, because it's all happening to me all at once, constantly, in the background, and I'm so used to it that I wave it off and go "Meh, it's just Things, it's always been Things, whatever" even though my entire brain is screaming and full of storms. I don't listen to myself enough; I'm too used to me. That's part of an upcoming therapy session, too.

Very current parts of therapy have been literally watching comedy videos while exercising. The Nostalgia Critic videos on YouTube, for example, and Futurama on Netflix, and Cartoon Network during the day (Woo, Amazing World of Gumball, woo, and also the creator of Uncle Grandpa was in my high school class, heeyy).

I've been sleeping with plush animals again since childhood. It's fabulous. Ty makes lovely plush My Little Pony dolls.
brightlotusmoon: (Asha)
http://www.speculativeliterature.org/Grants/SLFDiversityGrant.php
I had no idea this was a thing until my mom's novelist friend mentioned it. I'm going to apply and then look at other grants.

BTW, FYI, JSYK, etc: I'm happy. Nothing to do with cults of positive energy or what have you; although positive thinking plays a small part in a specific way, as well as negative thinking, which folds up into balanced thinking energy whatsit. Everyone is always saying "Find your happy." And I have. I'm still going to have low, bad, poor, ugly times, because that is life. People are going to criticise me for things and such, because that is life. Right now, the only thing that matters is how I feel. Good, bad, positive, negative. But I'm just happy. That's what matters. *slowly nibbles on a glazed honey bun*

First novel really is close to finished. I am struggling to figure out what's the better way to blow up everything before reforming. Exploding reality is haaard.
Second novel is flitting around my writerbrain. I think this is going to be all nonsequential. I'll assign chapters later.

LOL, my kitty. Callisto has taken over my leather task chair on which I use a Pillow Pet as a cushion. If I'm sitting, she jumps into my lap, walks behind me, curls around me, and suckles on my shirt while kneading.
brightlotusmoon: (Asha)

Good things.
The personal therapy protocol is juuust starting to work. Slowly and softly. The doctors said slipping off is natural. But my slips are fewer. I think the new drug is working much faster than expected. No terrible side effects after all between dry mouth and that tingly sensation that the world is shiny shiny shiny. But I can already feel those most compulsive thoughts starting to be quiet.

Now, if I could just not be badgered by acquaintances who want me to be better now now now. Yes, this has had me in its psychiatric grip for over four years. It takes tiiime to get the ideal treatment. Yaaaaugh, leave me alone. You don't know. You are not inside my neurology.
Repeat. Rinse.
Those of you who get it, you get it.

So much meditation. It is in my dreams. I am ready to work myself through and beyond. Shut up about it taking all these years. Damaged braining is hard.

I make it hard for people to love me well enough to help. Which is why I need to do this on my own.

/venting ranty ramble

brightlotusmoon: (Asha)
My general physician refuses to referr me for hyperbaric oxygen for what I agree is totally valid reasons, unless my neurologist and pain specialist both think it's okay. I just finished a scholarly article saying that there were no conclusive findings or great evidence that it did anything for brain damage. But we'll see what the other doctors think.


Oxygen Therapy or Hot Air? Bioethicists Say Treatment Doesn't Pass the Test - NBC News.com http://www.nbcnews.com/health/health-news/oxygen-therapy-or-hot-air-bioethicists-say-treatment-doesnt-pass-n262791
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.

Profile

brightlotusmoon: (Default)
brightlotusmoon

March 2015

S M T W T F S
1234 567
89101112 1314
15161718192021
22232425262728
293031    

Syndicate

RSS Atom

Most Popular Tags

Style Credit

  • Style: Dreamscape for Ciel by nornoriel

Expand Cut Tags

No cut tags
Page generated Aug. 18th, 2017 09:44 pm
Powered by Dreamwidth Studios