brightrosefox: (Default)
Because part of All The Therapy is blogging my feels. And this was short enough anyway.

'kay.

I'm having a Being Elsa day. My symptoms are awful and well beyond control, and the smallest thing triggers the fibromyalgia pain and the mild C-PTSD symptoms. I cannot even hear or read someone speak from the cult of positive thinking without internal screaming.

I've seen many other friends here having similar issues. I'm not dealing with a terminal disease, but said terminal friends keep reminding me that we are all "In This Together" (that's my current ringtone. It's from Apoptygma Berserk).

I admit, the Being Elsa days seem to counter the Being Alice days (Being Alice is my code for epilepsy, seizures, and postictal aka post seizure state. Being Elsa is a new code for mental illness and neurological disorders including all chronic anxiety, social phobia, chronic stress disorders aka complex post traumatic stress disorder, sensory processing disorders, and some co-existing conditions linked to spastic ataxic cerebral palsy).
That was much words but I was born full of words. I blow word raspberries.

I totally do have gleefully joyful fun talking about my medical history. Interested friends have told me that I tend to discuss it clinically and technically, as though describing a patient who is not myself. I've been told that my medical and scientific wordening as a curious patient has helped fellow chronic illness patients examine their own conditions closely to find ways to help treat specific symptoms. That is such an honor.

Anyway. Is anyone else having their own version of a Being Elsa day?

(Alice is from Alice in Wonderland and Elsa is from Frozen. Because of what happens to them. Etc. I actually still have not seen Frozen all the way through yet. I will, obviously, and it will be many times. But I relate desperately well to Elsa, her hidden aspects, her representing disability, autism, childhood abuse, chronic anxiety, PTSD, personal orientations, and her love for a sister beyond a potential unnecessary husband. I only have chosen sisters and I love them so hard like the stars.)
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So! I did a thing a while back. I didn't tell anyone. Anyone at all. And now it is time to come clean, because it's been long enough that I think I can finally shoot down the pushers.

I did a second gluten-free trial, lasting just under one month. I spoke to all three doctors and specialists, who were okay with it. Although I shall quote my primary physician, Dr Carolyn, who has treated me since 2003: "I don't see why it's really necessary, though. You've never had gluten sensitivity, let alone celiac. But if it will help you psychologically, then sure. Let me know." And to quote my neurologist, Dr Debbie: "Why are you doing this to convince other people? I mean, I'm genuinely amused. You don't need to cut out gluten for health reasons, anyway." All I could do was shrug and say, "I guess to prove a point to the health-pushers?" She said I had a point, since that was irritating, to be pushed at.

The results were...

Wait for it...

Nothing.
Absolutely nothing.
There was no reduction in chronic pain, fatigue, inflammation, or malaise symptoms of any kind. I did not feel more energized nor clear-headed. My life did not change, not even a flicker.

Now. For the past several weeks, I've been verbally assaulted across the board by people who just want me to feel better - by using blatant, callous emotional manipulation to force me to comply.
The most popular one so far has been "Well, what if you were dying? What if you found out that gluten would kill you and that by going gluten-free you could save your life?" See, okay, that is a fascinating thing right now. That is one of the most manipulative, passive-aggressive, hard-hitting, one-sided forms of coercion ever. The speaker is hoping to catch the listener in a corner, with no choice but to agree. And see, they're correct there. Obviously if I were in such a scenario, of course I would go gluten-free. But the catch is that I am not dying. I am not sick. Thus, no desire nor need to go gluten-free. Not unless that life or death scenario occurs!
Following up that particular attack, we then have this, "Well, then, don't you think going gluten-free would at least reduce symptoms and pain?" Which ties into the first, of course, and is subtle enough to seem harmless and reasonable. And... no. Because gluten causes problems if one is reacting to gluten. Which I wasn't. "But I read this book written by this doctor that said that for everybody, gluten can cause overall body inflammation and pain!" For everybody, really? All seven billion humans, with the exact same medical issue. One would assume the CDC, FDA, and various world governments would be all on top of that like roaches on dog food. Plus, I listened to a conversation said by this doctor, who is personally treating me, that said that I didn't need to restrict my diet like that. But you're right, book-writing doctors would know better.
Now, the big guns. This attack is my favorite, because it strikes right at the heart, it tries to destroy the option of choice: "So, I guess you'd prefer a life of pain over fewer symptoms." It can be said in multiple ways, but the core is always a smug, smarmy, morally superior, I've got you now rhetoric. It's a tough one to counter. If you say yes, you seem as though you just don't ever want to really help yourself after all. If you say no, well, why haven't you taken their advice? You see the attempt at emotional superiority and twisted logic? At this point, you can tell they are grasping at straws. They've seized on an idea, fixated, and found themselves unable to let go. I get that. And they most like don't even realize that what they say to you is painful or upsetting. They only want to help. They care deeply enough. Obviously, when you love someone, you want to see them happy, healthful, pain-free. When they are in chronic pain, when they hurt every day, you hunt frantically for ideas about treatments. Even when they have doctors and treatments, you just want to do something, anything, because you can't stand to just stand by. They're hurting. Why can't you help? You feel helpless.
But emotional manipulation and verbal attack is a very ugly way to go about helping. They are more likely to stop talking to you. In fact, with most of these people, I've started not talking about my symptoms. Which is funny, because these are my support networks. These are support groups, people who are willing to help. Except for the ones who don't know how to help, the ones who don't have chronic illnesses like mine, who can only see the experiences vicariously. Intellectually, they may understand that it is inappropriate to push, but it feels so right emotionally that they can't help it. And I've been there. I've done that.
The problem here is that if people actually cared about your pain, your chronic illness, they wouldn't apply these manipulations; they are generally more concerned with winning you over and being right. Nobody truly means to be an asshole in a situation like this.
However, in the end, that gut-sensation of being right, of knowing what might work, is overwhelming and almost brainwashing. It's almost cult-ish. I'll call then health preachers. This isn't about just gluten-free. This is about every dietary alteration ever suggested. This is about every medical treatment involving home treatments like food and exercise, meditation and yoga, supplements and massage, etcetera. I haven't even gotten to pharmacological medicine and holistic medicine yet. Or the people who deny psychiatric illnesses, who think psychiatry is fraudulent, who believe firmly that clinical depression isn't real and is literally psychological, delusional. Frustrating, isn't it.

So, anyway. My Plan. I went gluten-free for just under a month. I kept notes. I was alone, because Adam was away on business, so I just cooked for myself and didn't touch anything with gluten. I was hungry and bored. I mean, the food was delicious. There was a lot of quinoa and lentils and sprouts and cheese and meats and snow peas and carrots and apples. I ate a lot of steak. But I just felt annoyed.
My doctors were extremely amused and not at all surprised when I told them the results.
Seriously. Three separate doctors. All saying the same thing. I mean, at this point, if I were to tell Dr Carolyn to refer me to a blood test just for the hell of it, she would quirk an eyebrow at me and ask who was giving me the money for the test (I don't know if Medicare covers those), and we would laugh.
But I didn't tell anyone I knew. Not for the whole duration. Here and there, I casually mentioned that I'd done gluten-free trials without any changes, I casually mentioned that I didn't need to cut out gluten and that there were plenty of other ways I was already mitigating symptoms. I stopped updating my support groups. I just said that I was doing well on my medications and therapies, and when the weather got bad I would flare up terribly and kept treating myself. I mean, even if all my symptoms vanished, I would still not be rid of pain, because of the cerebral palsy. Which 1. is never going away and 2. is getting worse as I age, which cannot be stopped or relieved. Which people rarely realize, because nobody thinks about the crip adults.
So, yay, you, my LJ friends, get to hear it first. I went gluten-free and it didn't do shit for me! Yaay, that was pointless! Let's dance!
It was fascinating. During my trial, I was reading entries on my friends list about people cutting out gluten and realizing that their lives were changing for the better, that they were celiac after all, or intolerant, and that going gluten-free made all the difference and they could love food again, woooo! I was so happy for them I almost cried. It was amazing, reading about their joy and euphoria and ecstasy. Food, they cried! Food is wonderful again! And I nodded, and grinned, and focused on myself and how my gluten-free test trial was just like any other day, except boring.
And I put up with preachers, and pushers, and well-meaning manipulations. And I said nothing. It did hurt, being attacked like that. I sobbed and snarled and surrounded myself with friends who knew the powerful irritation of being shoved around by gluten-free pushers. I kept going. I took double the Klonopin. Days and weeks passed. I stopped the trial. I ate grains and wheat again, slowly, lovingly, with savor.

Today, I was recommended a wonderful book called "The Gentle Art Of Verbal Self-Defense" by Suzanne Haden Elgin. I've gotten a sample of a few chapters, and I'm so hooked that I'll be purchasing the updated version as soon as I have money to buy it. I'm lucky that I've been able to recognize Verbal Attack Patterns recently, but the book will teach me to escape as well as use communication to resolve. I need that. I need to learn peaceful communication getting to the root of the problem without hostile interaction and confrontation, without arguing over semantics. I like to hyperbolize. In fact, a handful of friends and I like to snark at, hyperbolize, and satirize the beliefs of health preachers, like those who firmly believe that gluten-free diets could help everyone who doesn't need them, the way that accepting Jesus will get people to Heaven so the preachers can see them after death and hang out with them in a conforming afterlife. See why this may not work? See why this can be more about the preachers than the listeners?
It is nearly impossible to fight a very calm, gentle person. I need to learn that art of fighting with calm. I need to learn to not be enraged and screamingly upset and insulted whenever anyone tries to manipulate my emotions. I need to learn to break my own cycle of verbal hostility, which will help me handle those manipulations disguised as helpfulness.

Other thing I loathe: Being told that having a mild version of a disability doesn't count. I already discussed cerebral palsy and aging with the chronic pain caused by spastic hypertonia. And they don't back off. No matter how many times you patiently explain anything. Now that is where I really, really need to learn gentle verbal self-defense tactics. Because oh my fucking gods I want to punch them full of holes.

Ahh, humanity. Fun!
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'Reborn' by Laura Sava (anotherwanderer.deviantart.com/)
'Mirabella' by Rachel Anderson (www.silverstars.us/‎)

Two forms of my own story character, Asha Clara Night, my strongest, most individual, most personal fiction character.

These paintings. Completely different images that look almost exactly like incarnations of the same character of my own subconscious creation Women who look almost exactly like the dreamself I am becoming in my dreams and visions.

Laura-sava-Reborn

Rachel Anderson Mirabella


She was in my dreams last night and many nights before. I haven't decided exactly who she is yet, but in my dreams her name is Asha, meaning "desire, hope, hopeful; life; alive; she who lives." Which says so much, so so much.

She is another dreamself, not a spirit guardian, but much closer to my Self than my other characters (Alicia, Serena, Ananta: my spirit guardian coping mechanisms for epilepsy, memory loss, insomnia, sleep problems, [Alicia], chronic pain and fatigue, depression, anxiety, physical disabilities [Serena], neurology, neurodivergence, autism, total mind-body connection [Ananta].

Asha seems to represent many internal things about my emotions, my heart and mind, my rhyme and reason, my logic, my science, my creativeness and creativity, my power, my energy, my beauty. If she were to reveal herself as a guardian, she would be for emotional states, creative thoughts, desires, loves, patterns, ideas.
Asha is definitely powerful in a way I always wanted to be since childhood: Fae and and Elemental Mage and Neurodivergent and Autistic Witch and Quantum Magic Scientist and Story Crafter and Shape Shifter and Magic Librarian and Magic Keeper.

Asha seems to represent my deep, obsessive, compulsive wish and desire to be one of the psionic-mage superhumans in my stories, to take over for be when I feel failure and self-loathing and terror and panic. I think Asha may in fact be an actual entity, one who communicates outside instead of simply speaking into my visions, dreams, pain flare withdrawings, anxiety attacks.

All I know is that Asha was in every dream last night and throughout the past several sleeps, long detailed intense dreams, and she quoted Kosh. She spoke in a soprano version of my voice that could sing. She was always here She is always here. She has always been here.
I think she was with me since I was a baby. In different forms, in different species, with different names, in different imaginary beings, in different fictional characters. She was made of fire. She used to be a phoenix, a unicorn, a dragon, a star, a nebula. I know Asha. I know Asha in the way I hope to know myself.

The thing is, Asha has a fully active voice when I am completely conscious, aware, awake, functional, and stable. She didn't completely create herself, but she grew and evolved over my lifetime in her own way as a character in my subconscious. She took ideas I worked with and wove them into her personality, behavior, and mentality. My disabilities are hers. She stayed and changed and grew with me like a permanent piece of my spirit. Asha also represents my fluid sexuality - I often visit her in the place she calls home and we make love, representing my desires for love and orientation.

She lives with Alicia in the Wonderland cottage, but she freely moves about my brain more often. She shapeshifts into elemental energies, she moves around my hippocampus and amygdala and temporal lobes and cingulate gyrus and thalamus and auditory cortex and somatosensory cortex and parital lobe and the back of my brain.
She has altered the Wonderland cottage to be something else entirely, with three bedrooms, two bathrooms, two office rooms, a large entertainment living room, a large kitchen, a basement. The outside build would contain concrete, cement, hemp and limestone, bamboo, steel. The glass windows are shatterproof. The doors are hemp-lime and timber. That must say something about my mind's inner workings. Especially since the main reason for hemp being illegal is due to its threat to corporate patentable synthetic fibers and wood and paper product industries, while the medicinal drug potential became subject to false claims and fear mongering alarm campaigns until the original industrial potential became buried under the alarmist anti drug campaigns. Part of me probably knows how powerful this is. Medicine from nature itself and the human brain itself is usually denied and seen as worthless.

Asha represents that part of me that firmly supports the controversial balance of traditional pharmaceutical medicine and nontraditional botanical medicine.
Asha is my activism and advocacy. Asha is the fire that moves my belief in the combination of synthetic drugs and organic drugs. Asha is the phoenix in me that rises after every defeat, every failure, every attack, every oppression, every attack and assault on my truths and faiths.

Throughout many names, faces, back stories, lives, personalities, and individual growths... she has always been Asha Clara Night. And this is how she asked me to look so I could see that there is beauty deep and shining.

I must find and thank the artists for these images, since I found myself taking these pieces of artwork and subconsciously turning them into incarnations of my own fictional character.

https://www.facebook.com/photo.php?fbid=10151978626835684&l=17dde55bf4

Asha may well be the character in that second novel after all. It won't be this Asha, my Asha; just a version, a more humanized incarnation I can bring out to show the public. This excites me. She could help me write it, just by living in my mind.
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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.
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Because I'm always the fucked up, mentally bizarre, clumsy, twitchy screwy fool who never gets it right, and even when I try to make it better I do such a poor job it needs to be fixed again and again. Some people call it cute and endearing, some people call it stupid self absorbed insanity. I keep trying. I don't even know. I'm tired of people telling me what I should do just because they want me to. Advice and suggestions are awesome. Pushy preachy sanctimony is awful. And even if I don't do it the way people want me to, at least I'm doing it the best ways I know how.

My best beloved cat is ashes in a box because I waited too long; my floors are never clean enough; I watch the same television shows and movies and read the same books over and over for pure comfort and joy; my memory is disintegrating and the only reason I remember anything specific is because I cheat; I want my friends to be okay with each other; I want to talk about things that confuse and fascinate me which include my disabilities; I collect current My Little Pony toys; I just want people to realize that my autism has a name and they can use it without assuming I'm begging for attention, same thing with my aging cerebral palsy and fibromyalgia; I want people to stop insisting I do yoga and to stop insisting I quit eating wheat or dairy when I don't need to, I can't go vegan, I hate tofu and my body can't handle it, I can exercise all on my own;my drugs, supplements, and therapy sessions are working exactly as well as they should be and I twitch when any of them are attacked by people who don't understand; sometimes I actually do physically feel like an old woman and it is absolutely not ever because I am somehow conjuring it or desiring with magical thinking like in that book about law of attraction with pure belief, and if someone really thinks that kind of awful thing about me, then they seriously need to realize that I do not think like them and never will, and they cannot change that.
I am just me, and as I grow and change it will be me, myself, with bits and pieces of suggestions that I will keep and discard as I grow.

I have no fucking clue what made me write this out. Frustration, upset, irritation.
Feel free to pick it apart or ignore it. Just don't trash my medications or doctors, because in that aspect I am doing just fine. Just... this isn't even "vague posting" or "cryptic posting"... I just needed to release something. Social media like this may not be the best place, but by gods, I have so many people on my feed and friend list who understand and are in a similar place. This is for them.
brightrosefox: (Default)
I suppose I have 2014 resolutions already, so...
1. Ignore people who tell me that cutting out gluten will help fix most of my problems.
2. Ignore people who tell me that cutting out dairy will help fix most of my problems.
3. Ignore people who tell me that doing proper yoga will help fix most of my problems.
4. Ignore people who tell me that ingesting certain medicinal plants will treat, heal, or even cure most of my problems. I may take almost forty supplements and I advocate fully for supplemental medicine, but I am aware that not even the ones seen as miracle magic panaceas will do everything for everyone.
5. Politely remind people that being autistic is not a death sentence, that autism is not caused by vaccines, that having autism means seeing and communicating with reality in various beautiful ways, that I do not want or need a cure for autism, and that any "charity" seeking to cure autism is not one I will support.
6. Politely remind people that cerebral palsy cannot be cured, that it in fact is a static brain injury that usually results in comormid syndromes, associated disorders, and attached conditions like epilepsy, autism, joint pain, joint degeneration, bone issues, muscle pain, chronic pain, premature biological aging in certain aspects, and the eventual need for a mobility aid, be it a cane, crutch, or wheelchair.
7. Politely remind people that recently, fibromyalgia has gone from a "trash can diagnosis" to an actual, factual pathology, and that most doctors and specialists now understand and most importantly believe it is a real condition and not just an excuse to get the patient out of the office, that there are many symptoms, that sometimes what seems like fibromyalgia really isn't and vise versa, and that there actually are ways to diagnose it.
8. Politely remind people that I only just learned of my autism in the summer of 2013, and I am still discovering and figuring out all the little things that comes with it. Including special interests, otherwise known as narrow interests. If I seem obsessive about one thing or another, a friend can choose to politely ignore me, because I won't care that much. However, being belittled, scolded, yelled at, snapped at, and insulted for being a broken record about certain interests will not be tolerated and might result in removing such people from contact lists.
9. Try to not grind my teeth when someone tells me to "just think positive!" about my health issues, as I have subconsciously internalized the phrase "just think positive" with magical thinking and the concept of pure belief healing illnesses. Try to see the phrase "think positive" as literal once more, not a ridiculous catch phrase from spiritual self-help books.
10. Be happy. Even when not. Also, keep slaying syndrome monsters and such.
These are not resolutions anyway, because I don't make resolutions. I just write lists because my memory is falling apart.
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BTW, I'm officially on MediCare Part B (retroactive as of November) and earlier my Part C Aetna Medicare ID Card arrived, which won't be active until January 2014. It is all good. It will still save over a hundred dollars a month between all insurance and drug coverage. All my doctors are covered, all my drugs will be cheaper, and I have carefully read, re-read, and examined all the paperwork with a magnifying glass (no, really). So December's SSDI check will be less two months' insurance payments, and then January's check will also be less the Part C payment, but it is all good, because it is still cheaper than what I am paying under MHIP Carefirst in general. I feel... well, I don't know if "lucky" is the best word. But it is not as bad as it could have been. I mean, I also ride Metro and local bus transit for free thanks to being disabled and a member of Metro Access paratransit system.

Some fully able-bodied people like to scold me for feeling grateful that I am disabled enough to qualify. It's not about that 'grateful' feeling or that whole "skip to the front of the line" thing. It's not about any of that. It's... I dunno. It's about taking whatever disordered damage you have and turning it into a personal individual advantage that works in your favor. It's about accepting and embracing the awful pained cracked parts of life and seeing that they have been opening all these shiny doors, after slamming closed other doors so furiously that the whole building shakes and walls crumble. You may never be able to walk through those slammed locked bolted doors that most able-bodied people get to glide through easily, but you have all these other doors opening just for you, ready to lead you to places where you, personally, will feel more comfortable, accepted, embraced, and understood on a level secure with your disordered damage. It's not your fault, and the places these doors lead you are fully aware and have already set up a spot for you. You are always safe in those spaces in between.

Like... having mild disabilities. For example: Having mild cerebral palsy is like being in interstitial places constantly - interstice being a small space that lies between things; a space that intervenes between things. Neither completely here nor there. A space in between. A crack in the continuity. Mild autism in that nobody believes me until they spend a few word-filled hours trying to decipher my brain languages. Mild ADD and mild OCD and mild/moderate but fierce migraines and headaches and mild/moderate but fierce epileptic complex partial seizures and mild/moderate but fierce chronic pains and mild inflammations and and this and that. Mild mild mild. Haunting and interstitial. Never bad enough to cause me to be rushed to a hospital, never simple enough to merely pass by with a handwave. I am those spaces in between, as are many, many, many people with certain neurologies. We are in those cracks. Oh, they say, it's all right, they're not too bad, they could be worse, they say. And then what?

Any fellow disabled folk and people who understand want to chime in? Am I making enough sense here? I feel like I am.
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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.
brightrosefox: (Default)
"Sometimes the only way I know how to work through something is by writing..."
Hi.

"Now I know that the number one rule to being cool is to seem unfazed, to never admit that anything scares you or impresses you or excites you. Somebody once told me it's like walking through life like this. You protect yourself from all the unexpected miseries or hurt that might show up. But I try to walk through life like this. And yes, that means catching all of those miseries and hurt, but it also means that when beautiful, amazing things just fall out of the sky, I'm ready to catch them. "

I need this. I've spent my entire life catching all of those hurts, and sometimes those hurts are beautiful and amazing - because they live inside of me. Even the painful parts. Even the Monsters. I don't always declare war on the symptoms, I often imagine myself using psychological coping mechanisms, transporting my quiet self to a Zen garden with cats and sunlight and wildflowers, as the warrior parts of my brain battle those Pain Monsters with spears and war cries. It is a mind over matter dance that does not erode the symptoms, but helps me work with and deal with them. I apply creative writing to cope and to run to other worlds in my mind.

It is seen as Positive Thinking. But I tend to flinch at that term, because it is usually followed up with a sunshine up the ass platitude. I do apply a method of positive thinking to my conditions, disorders, and disabilities. But it is my own personal method, and whenever someone tries to insist that I use a different method, I naturally stand firm and stare them down. This is why I am happy that all of my doctors, specialists, and therapists are extremely willing to help me achieve my own positive thinking, because it is my own, and I know exactly what I want from it.
Unfortunately, it also makes me extremely vulnerable to criticism. I am probably Doing It Wrong. I am probably Wanting To Be Chronically Ill All The Time. I am probably Magically Convincing Myself That I Am Getting Worse. I Obviously Am Not Thinking Positively Enough - because my biggest coping mechanism is to write it down, and to share my newest findings with people I love and with people who understand my situation. At least, those are my assumptions. I made a few poor assumptions and lost a few acquaintances. But I moved on. Now, I am still writing, still speaking out. Now, I am determined to hold on to my personal method of positive thinking no matter who tries to change that method.

That is why I love this message from Sarah Kay. No one else can work inside my mind like I can. Each of us has the power to think positively in a way that works for us and us alone.

The next time somebody tells you that you need to stop doing it This way and start doing it That way, think long and hard about it before you even reply. Some things are just not worth debating. Sometimes all you can do is smile and nod and say "Thank you for the advice" - and move on. It is your mind, after all.

http://dotsub.com/view/e8f7d701-e410-464d-9051-eeae8a1ddd44/viewTranscript/eng

http://www.upworthy.com/watch-the-ted-talk-that-inspired-two-standing-ovations?g=2

I will probably listen to this video enough to memorize or recite most of it, and my poor memory will do its best to hold it close.
brightrosefox: (Default)
Quote from a friend that applies to me in a scary way:

"If you really feel like picking a fight with me, you will have to wait until tomorrow afternoon. I'll need at least two good meals, some meditation, a comedy film, a squeezable exercise toy in one hand, and a muscle relaxant drug that will help me type properly without muscle pains and tensions.
This is why I like arguing online: We each get our points across without interrupting shouts, we can research and cite our sources properly, we can explain exactly why the other person's argument is fallible, we can defend our own position logically and rationally, we can actually get words in edgewise without stammering and snarling from both sides, and we can save our vocal chords from getting sore.
I hate debating in person. My opponent loves to tell me exactly what is wrong with me in ways that don't even make sense, and he or she refuses to let me explain why that argument has no basis in reality.
Let's say, for example, that he or she decides to pick on the fact that I have a terrible memory in general but I can easily quote my favorite books and movies. Do you know why I can easily quote my favorite books and movies? Because they are my favorite books and movies. It has absolutely nothing to do with having a poor memory overall. It just means that I've read certain books and watched certain films often enough to at least paraphrase, if not fully recite, entire lines of dialogue. See, people with brain issues such as autism spectrum disorders are able to do things like that. Having a disintegrating memory while being able to recall very specific things does not mean that I am pretending to have a selective memory, and frankly I feel insulted when it is implied and inferred.
I am chronologically young and neurologically aging. I also have many friends going through the exact same process. I talk about my experiences often, so people like me can know that they are not alone.
If you want to fight me about that, if you want to accuse me of deliberately living inside my brain disorders, please come inside my brain disorders. They're all connected, so it's like a fantastic patchwork house. My brain has a very comfortable couch. Would you like some tea? I just got some red tea. I have decorated it with my disorders proudly. They are part of me, after all. They are part of who I am. Aren't they beautiful? Like shiny, sparkly, broken puzzles. I may never find the missing pieces. That's fine, though.
Did you know that in Japan, when a ceramic sculpture is broken, they weave gold through the piece when putting it back together? Kintsugi: the Japanese art of repairing broken pottery with gold. The idea behind it is that the piece becomes more beautiful and valuable because it has been broken and has a history. I am full of gold-filled cracks. I am very proud of that. I am proud of my disabled and handicapped history. My life is made of gold!
Oh, please don't look upset! No, no, please, sit comfortably. I hope the tea is to your liking. Yes, even that mug has gold fillings, Even the couch is sewn with gold. This entire place is filled in with gold. And it is lovely.
Wait! Did you mean that I use my disabilities like crutches to make excuses for being in pain? That's ridiculous. I mean, I certainly don't mind magical thinking, but you can't make something that extreme happen just by imagining it. I'm not imagining it. I'm living in the right now. And, like many disabled people, my right now means having a body and a brain that feel more injured and aged than normal. I talk about this so that others like me understand, so they have answers to questions they are too worried to ask. Sometimes when you approach age thirty it can feel like age sixty, for some of us. That is why I am an activist for certain disabilities and an advocate for certain health treatments.
Oh! Oh, my! Is that also why you're angry at me? Do you believe that I use my medical problems as an excuse to do nothing while I am young? That is the silliest and most untrue thing anyone has ever assumed. Perhaps you should talk to some of my disabled activist friends. They will tell you the same thing. Life is hard for everybody. But it is sometimes a little bit harder for disabled people. We're not special snowflakes. Although snow and cold do sometimes make us hurt more!
Have some more tea. It's very calming. We need to be calm for this fight.
Just let me know when you are ready to fight. I need to do some meditative qi gong exercises to prepare. Just please keep in mind that I would rather we each complete a piece of debate without yelling over each other. It is much more difficult to weave healing gold threads through words."
-Written By A Disabled Gentleman Who Shall Remain Anonymous, And Who Reflects My Exact Thoughts, Feelings, and Personal Beliefs With Incredibly Frightening Accuracy To The Point Where I Could Have Written Most Of This In Various Bits. Not Kidding, I Think This Guy Shares My Writerbrain.

Anyway, speaking of the art of using gold to heal broken things!
http://www.pinterest.com/uberECOcool/kintsugi-saving-broken-ceramics-with-gold/
brightrosefox: (Default)
Day after seizure with migraine:
Still working through recovery from seizure and migraine.
Allergies and fibromyalgia flare not helping.
I shall go read books and watch cartoons!
brightrosefox: (Default)
Hmm. Still heavily outlining the second novel.
Clara no longer has a healing factor; she has quantum phasing - aka phase shift, intangibility ghosting, limited Kitty Pryde power. Amber has a more specific type of telepathy, which connects more with quantum consciousness than actual thoughts - aka soul communication, extreme telempathy, spirit communication, highly limited Rachel Grey power; and Amber's telekinesis is far more developed, including limited healing touch and limited emotional healing on others, which can weaken her without shielding or channeling, but still limited Rachel Grey power.
Clara's hypermobility and joint pain symptoms eases during her phase shifts. Amber's cerebral palsy with its comorbid syndromes eases during any major psychokinetic procedure, but once they're finished, the pain hits them twice as hard, leaving them weakened for at least several hours.
I like that enough to work with it. *nod* But I need advice, opinions, and consultations to make sure I'm Doing It Right. For example, since both Amber and Clara hace mild autisms, I have to wonder how their perceptions are affected by their powers.

Also! Thoughts on surnames. Since Clara has full Indian heritage on her father's side, her surname will be probably Atma (and her mother has Siberian and Swedish heritage). Since Amber has full Greek heritage on her father's side, her surname will probably be Spiro ( and her mother has Norwegian and Hungarian heritage). "Soul" and "Spirit" as meanings seem to work for me. I'm not sure if I want them hyphenated or separate.

At the start of the story, they've been legally married for just under one year and are in their late twenties, share a birthday one year apart, and have family members with disabilities and superpowers. Amber is on SSDI but is works part-time at Clara's office, which is (for now) Transdimensional Research and Exploration. Clara and Amber are among the very few paranormals who can open and enter the interdimensional portals without harm. I'm going to be focusing on one or two alternative worlds, perhaps a Fae dimension and an astral plane.

Sometimes I see Amber and Clara as Deanna Troi and Will Riker, a version of Imzadi for life, on and off for so many years before finally just saying "fuck it" and getting married and embracing their intense connections. This novel takes place well after the wedding but I plan on doing flashbacks.

Writing. Writing. Breathing. Breathing. Calming. Calming.

Many thoughts. Many Worlds Theory, indeed.
brightrosefox: (Default)
I really must post more here.
I've been in a depressive episode, one that now includes a postitctal state.
Feeling truly alive and worthy can be difficult.
Bah.
I'll work through it and past it. I always do.
Everything hurts. Pain is concentrated in my skull, my face, and my neck. It is hard to lie still with my eyes closed.
Luckily I have many different treatments, yay.
Maybe tomorrow I can really start the second novel as more than outlines. I still need a title. The title "Glass Lotus" is still among the top choices. I still need to research paranormal contemporary nontraditional urban fantasy novels featuring LGBTQU characters with disabilities and superpowers. (Good luck, Jo.)
At least I am eating.

Rrrgh.

Aug. 3rd, 2013 05:20 pm
brightrosefox: (Default)
So, this entire week was spent in a hideous, horrid, horrific, vicious fog of pain and histamines and fatigue and weakness and etc. But right now it is slightly better. I finally managed to get some headway on the Amber/Clara story that will turn into a novel. I got officially rejected by TOR themselves. Hee. I've sent the main novel to other editors in the meantime. I will be changing the title, since Adam informed me that a new video game has that title. /shrug.

It's those things you don't ever give up on, no matter how much you want to, until you breathe and meditate and take Klonopin.

Lammas was lovely, and now it is raining once again. August is going to be weird.
brightrosefox: (Default)
You guys, I amaze myself. I've been writing helter skelter all over the place: Novel, stories, novellas, blogs, facebook, notebooks with various pens, everywhere... in the middle of a postictal migraine and insanely horrific agonizing chronic pain flare-up following recovery from a panic attack. If I didn't have a computer or paper I might write on the walls. I hurt so badly I have no idea what I'm doing. I feel half fire and half water. Wild and raging, and all I want is a crackling bonfire and a rushing river.
I doctored up a photo of myself and it came out half gold light and half blue light. It looks inhuman. But part of me adores it so much. My face is two different parts. I am two entities in one. When I burn, I am cool. When I am cool, I burn. It is ying yang, dragon phoenix, up and down, left and right, I don't even know. I don't speak out loud except to my cats, I just speak through Story. So much Story inside me.
That rock. That rock that my husband gave me, the rock that he held while standing in Room 217 of the Stanley Hotel, in which Stephen King wrote "The Stand" and used as an inspiration for "The Shining". That rock is still next to my laptop. I am covered in words. I am filled up with Words. I may disappear into Story. I may not even see the world until I have to.
Is this what it is like to live in the land of the Fae and then come back to the land of humans?

jowitchzen2

Maybe it was the super moon. Maybe it is the heat from the sun now. Maybe it is anything.
brightrosefox: (Default)
I am starting to officially read "World War Z" by Max Brooks. I don't know if I can. I'm not joking. I may need Klonopin. I'll have to skim and speed-read.
I know people don't really understand super irrational phobias like this. I know fear is a basic and intangible biological, evolutionary reaction, that it can keep you moving, that it can help survival. But irrational fears are... I mean... you know. They hurt. They damage. They are inexplicable. No amount of "Oh, get over it" can soothe irrational fear.
But I'm only at Tel Aviv and I'm shaking. I know how the book progresses, I know what happens, I know about Yonkers... through wikis and reviews and recaps and summaries. But I don't know if I can sit down and actually read the whole thing as it is.
My mind is so odd in that way.
I suppose this is a high praise and testament to Max Brooks's talent. But this is one of my absolute violent fears printed on paper and bound between covers. If I can make it to the end of the book - fuck, if I can make it through Yonkers - maybe I will be okay.
I just need to remember that any nightmares about living corpses stalking me are just dreams. To quote a beloved and wise friend: "being afraid of anything is bullshit... fear cannot hurt or touch you - put it in a box and stuff it the fuck under the bed." It is a powerful kind of truth.
It doesn't work in some situations. However, in my own case, it is the truth. To "be afraid" is to react. Everyone has a fear, multiple fears. But not everyone is afraid. Fear serves a very important purpose in evolution and biology. But fear is not the creature coming to hurt you. Fear is the response. Not necessarily bullshit. But not always needed, either. Fear can be worked with. Fear can be stared down. Fear can be danced with. Fear can be used. Fear can be weaponized. Fear can be altered and manipulated. Fear can be conquered.
Unfortunately, when I am smack in the middle of fear, I forget that.
I have been afraid of stories before. My imagination is active beyond reason. One of my recurring nightmares features a rotting, moving, gasping human corpse crawling onto my bed, reaching out, and stroking my face. This is why the television series "The Walking Dead" is essentially the stuff of my nightmares, and if I stumble across a GIF or macro of one of its zombies, I freeze in terror before scrolling past or closing the window; the fact that it is only makeup and corn syrup and costuming means nothing at all.
Therefore, BREATHING.
brightrosefox: (Default)
Why is it that, in most dreams where I am in physical danger, I am unable to scream or move quickly?
My last dream involved a bad fall and crash at the top of the stairs, while a large group of people were downstairs having a small quiet party. Something supernatural was with me, something insidious. I grabbed the stair ledge and pulled myself up to a kneeling position. I yelled my husband's name, but it was only a whisper. I couldn't call for help, not with the shadowy creature surrounding me. I was moving so slowly. It felt as though nobody was in the house but me, me and the cats.
And abruptly, I realized that nobody was in the house. Adam was at work. There was no party. The cats were all downstairs. It was only me and the shadow entity. I struggled to call on my internal resources, my spirit guardians, but even my psychic voice was muffled. I was not afraid. I was determined. I was badly injured, and I only had myself, and my powers to create weapons and defenses were drained. I stopped trying to stand. I knelt there and mouthed words, calling on the water in the bathroom, the air circulating around the house, the earth under the house, the fire downstairs used to light the gas stove. I pulled in all into me, and with a desperate burst, I unleashed it. The shadow creature shrieked and vanished.
Without any warning at all, the house filled with presence again. There was that quiet downstairs party. I whispered my husband's name again, struggling to turn it into a cry. Someone must have heard. Adam came up the stairs and found me, sagging against the door of the bathroom, my nose bleeding. He spoke to me. He half-carried me to the bedroom and helped me lie down. He brought damp towels and tissues and water with electrolytes. I managed, somehow, to tell him that a negative spirit had entered the house and stole my strength, and I pulled all the elemental power I could to drive it away. He was very proud but also puzzled, since the house was supposed to be powerfully shielded and guarded. I was crying but I didn't mean to cry. It was just a reaction without intention. He stroked my hair and curled up with me, and me took my hand and fed me energy and power and strength, and he said, "Go to sleep, my darling. I'll be monitoring you through our psychic bond and everything will be okay. I will strengthen the wards." He needed to check on our friends. He would back be up soon.
The dream ended there.

It has been something of a recurring thing: My slowness in dreams. My exquisite agony in dreams. My whispering words in dreams. Sometimes I can barely walk for the pain in my hips and knees. Sometimes I can only speak with thoughts instead of physical words. Sometimes my body is wrapped in a floating translucent shell and it is the only way I can move. In my dreams, the pain is so much worse than in reality. But I have access to weapons of all kind and I feel safe, even if something horrible grabs me.

When I was a child, I had flying dreams every night. Even astral projection. Like my father and cousins in their younger years. And if a harmful person appeared, I just waved my right hand fiercely, shouting "Shoo! Shoo!" to make then disappear.

When I was a child, I dreamed of dragons, of ancient tortoises, of unicorns mixed with white tigers, of phoenix birds with feathers of every color. Dragons have never been dangerous to me. Even if some were, there were always other dragons who were benevolent.

It is why I always bristle when I read an article comparing chronic pain to dragons. The only way I can see such battles happening is dragon against dragon. And I am a human amalgam of dragon, phoenix, tortoise, unicorn, white tiger, and fae, wrapped in the skin of a moonlight witch.

Then, why do my dreams cripple me? The only reason I can think of is to teach me to use the insides, the powers coming from my spirit and not my body. My body is very important and vital to me. But perhaps not so much in my dreams.

And I think this piece of art, beyond anything, is one of the greatest ways I can understand myself. Every time I look at it, I weep. I even have that same cane. I know Shinga and I barely know each other, but she knows chronic pain. She knows what being a warrior means. She was in the US Army and was badly injured and treated so poorly during therapy that she has severe PTSD. She is disabled badly. She knows battles. And I want to hold her and hold her and tell her what this means to me.

http://shinga.deviantart.com/art/Awaken-Warrior-and-Rise-378439320
awaken__warrior__and_rise_by_shinga-d69b9nc
(Note: Please please refer to Shinga before borrowing or using this image. Please use the Deviant Art link. This is her work. Copyright Shinga. The only reason I displayed the actual image was in case someone can't click on the link.)
brightrosefox: (Default)
And now my brain is screaming "Oh for Apollo's sake, woman, stop writing, eat something, take your shower, bring the trash can in, and feed the fish."
I inherited it from my father. When he's sculpting stone or painting, my mother has to physically go to him and insist that he stop working and eat. And he'll look up with glazed eyes and say "Huh?" And she'll say, "John, you've been working for six hours. You need to eat." "Oh. Okay!" And immediately after digesting, he might read a book for a bit and then go back to work for another six hours.

So much staring at a laptop. So much typing with two or three fingers, which are now vibrating. Also, I need eye drops. Augh but LOL?
brightrosefox: (Default)
A wild anxiety attack. The beginnings of a migraine. Muscles actually feeling loose and relaxed in a fabulous way, which is probably in part due to the baclofen and tramadol, but close enough. A twinge of ulnar nerve entrapment. Some right knee swelling. A bit of hemiparesis. Some eczema and xeroderma itchiness. The beginnings of a mild major depression episode.

I will go snuggle my cats as much as they will allow. Several online acquaintances just dealt with the deaths of their cats (some peacefully in sleep, some hurried to the emergency vet). Sometimes I force myself to imagine what would happen if Jupiter, Luna, or Rose died. Owning a cat is owning a tragedy waiting to happen, as my parents say. But love... love lasts. Loving a cat is beyond anything in the universe.

I'm still reading "The Night Circus" by Erin Morgenstern. It is so beautiful. I still need to finish less heavy books, like "Between" by Kerry Schafer, "Dead Ever After" by Charlaine Harris, "The Darkest Kiss" by Gena Showalter, a new copy of "The Tower And The Hive" by Anne McCaffrey (all my Rowan series books have fallen apart by now), "The Winter Oak" by James Hetley, "Twilight's Dawn" by Anne Bishop. I'll probably get some kind of inspiration for stagnant stories somewhere.

Speaking of stories and characters, I've quickly fallen in love with Amber Kass and Clara Kim even more than with Dana Ryan and Ian Morgan - and Dana and Ian as a couple have been with me since my teen years. Sometimes I see Amber and Clara as Deanna Troi and Will Riker, a version of Imzadi for life, on and off for so many years before finally just saying "fuck it" and getting married and embracing their intense connections. This story takes place years after the wedding but I plan on doing many flashbacks. It will probably just turn into a big novel. That is fine.

Writing. Writing. Breathing. Breathing. Calming. Calming.

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