brightrosefox: (Default)
Hello from the LiveJournal user formerly known as BrightRoseFox.
Due to a complex thingy involving problems with emails and such, I have changed my LiveJournal name, my Yahoo name, and my Facebook 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 have been getting messages, emails, phone calls, and comments from friends who have told me what I mean to them. I have been amazed and heartened and lifted and joyous.
I may be a moonlight witch, but I cannot access the magic of the moon without accessing the magic of the sun. And the moon is always there, her power extreme eternally. And the sun is always there, his power intense forever.
I feel bright and powerful and in full bloom, like a great lotus blossom beneath the full moon.
brightrosefox: (Default)
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... )
brightrosefox: (Default)
This is the greatest.
http://yoganonymous.com/watch-ultra-spiritual/

Good news: Apparently, most of this small weight gain is actual muscle. Who knew.
Annoying news: Everything hurts in such a very specific way everywhere that most forms of exercise make it all worse. The only things that seem to make it better are isometrics and mild qi gong and a few basic Pilates-style moves... sooo, physical therapy with a spiritual bent?

Also, I still have a stress reaction to even the idea of "doing yoga for pain". None of my doctors are surprised. Plus, the physical therapist suggested some lovely snarky replies to "Have you tried yoga for your pain?" - my favorite is still "Well, yoga tastes like artificial banana, and I hate artificial banana flavor, so I don't want any yoga, thanks." Second favorite is "Nah, I'm still trying that floating Jedi thing in the swamps. I'd rather take the Dark Side with the cookies."
Seriously. Don't yoga push me. I did try it, it was painful, I found other things.

Now I feel like mimicking that scene where Bart draws a picture of Flanders and chases Homer around with it yelling "Howdily doodily! Howdily doodily? HOWDILY DOODILY?" Luckily, I haven't been pushed in a while, and the last few times, I remained calm and cool, because I am still fucking awesome.

Addendum:
Also, it's really interesting: I am totally fine with basic yoga, with flow yoga, with restorative yoga. But it is the way people talk about it as though it helps everyone heal everything? That is what I gripe so much about. Maybe some poses will help ease cerebral palsy issues, fibromyalgia issues, joint issues. Maybe. For some disabled folks. But if I say something like "No, thank you, I've tried that, it was too painful, it made things worse, and I have found other exercises that help me," I expect people to, if not back off, then at least acknowledge my reasons. The actual fact that many pushers have brushed off my reasons and kept pushing is what makes me want to slap them with their yoga mats. So when I talk about an exercise by calling it a name that is also the name of a yoga pose, please please do not assume I have taken up yoga. It's just that "Warrior Pose" is far simpler than having to describe the whole thing.
Comments:
Anna Sirén: Yoga? Us? Really? ...?
Joanna Capello Paul: LOL, it is to laugh. But by gods, people love to try.
Anna Sirén: Jesus, I can't imagine you with your ankles behind your ears, and that's not an insult.
Joanna Capello Paul: OMG ow. Ow ow ow OW.
Joanna Capello Paul: I'm just glad other CP folks get it. I don't know what's so particularly special about yoga, but it's become so elitist in many ways. And if I say I'm "doing Child's Pose" or something, I feel like I need to add "not actual yoga because that is painful" because just because it's a stretching exercise doesn't mean it's a yoga pose.
Cara Liebowitz: When a teacher who knows how to handle Ceeps is doing it, yoga can be nice. *coughcough* Kara T. Billingham. Yoga at crip camp was great fun, if painful.
Joanna Capello Paul: My mom teaches a certain type of yoga to seniors in Southampton sometimes, and the moves are so simple they're barely even yoga. What bothers me really is this culture of yoga-ier than thou elitism, and gods forbid I perform a "yoga style type pose" that is not yoga.
Cara Liebowitz: I wonder if Kara and your mom know each other. Next time you're in the Hamptons, stop by The Yoga House, LLC and ask for Kara, tell her you know me. One of my favorite things about Kara's yoga was that she encouraged us to laugh if we wanted to.
Joanna Capello Paul: Hmm. I'll ask my mom! Have you spoken with Kara lately?
Joanna Capello Paul: *looking at website* Well, it's good that she teaches Kripalu. My parents' basement tenant, who is a massage therapist, is a certified Kripalu teacher.
Cara Liebowitz: We speak every so often here on Facebook, last I saw her was over the summer. She is wonderful, wonderful, wonderful and so is her husband. Two very influential people in my life.
Joanna Capello Paul: I haven't been through Hampton Bays in a long time, but I do recognize that sign and building. I have a feeling that Kara and my mom have run in similar circles.
Melissa Boyer O'Doyle: I'd rather take the Dark Side with the cookies.
Heather Stover: I do vinyasa flow yoga and restorative yoga. It helps. With some things. It is not some magic cure for everything. If you're not into it people should leave you alone, your yogi wouldn't want you there with any less then a willing mind and heart.
Heather Stover: Gentle yoga classes are the bomb. I hate elitist yoga snobs.
Mad Miriam: You know you might just get people to back down more quickly by simply sating that you have a very satisfying home practice, thank you very much.
Joanna Capello Paul: ...except that when they keep nudging and insisting, I tend to feel backed into a corner, and I start snarling. I'm a very peaceful person. But I am also shy and isolated. I really don't like being pushed.
Mad Miriam: If your agreeing why are they still nudging and insisting?
Joanna Capello Paul: I really wish I knew. People are very odd.
Mad Miriam: I'll say. I'm sorry, I for one do not push cause well I know you have met the practice where you are at and since yoga means union isn't that the fucking point anyhow?
Joanna Capello Paul: Agreed. That's why I am so upset and pissed off when people don't seem to understand the whole damn point. Union is about, y'know, respecting people's choices. The fact that there ARE yoga practitioners who almost bully others into doing their kind of yoga - particularly disabled people - hurts me.
Joanna Capello Paul: For example, in the cerebral palsy support group I am in, there have been stories of non-disabled people pushing CP folks too hard, leading to injuries that were not fully recovered - physical and emotional. And that is just not right at all. And I feel like that is part of the weird elitist attitude that shouldn't even exist with yoga practice.
Mad Miriam: OMG Joanna Capello Paul I could not agree more, as a fairly mild arthritic I get the same shit and I don't get why its so hard for some teachers to understand that just cause I got into a really low lunge last week this week my knees and hips might just be too stiff to go there and that it does not mean I am not dedicated to the practice, it means I am listening to my body, something we should all aspire to do more often.
Joanna Capello Paul: Listening to our bodies! Exactly! I don't think people like that care about listening to the body anymore. You do what YOU must do for YOUR body. And I am so burnt out on teachers who don't listen. It's why I do restorative, flow moves with my mother over the phone.
I mean, I literally cannot be straight. When I try a lunge, or a pose that requires balance, I have to ask someone, usually Adam, if my body lines up. And when he helps get me into a straight aligned line, I start wobbling. It hurts. I am in serious pain. My body, my very bones, were never going to align like that. And so I need modification, compensation, compromise. And the fact that a lot of yoga practitioners have insulted me just for that literally created a stress reaction in my brain. So when I talk about yoga poses, I have to say "modified basic yoga" otherwise I start hyperventilating just from memories.
Mad Miriam: It is a myth that our bodies and bones can align to some artificial standard, we all all have such diffent experiences and phsyologies that make up who we are and it my mind if you are making room for the breath and creating sensation, but not pain you are doing it right. I totally agree through and think it is part of the problem with the comodifying of yoga, I think once upon a time, maybe there was the root of the notion that yogis practiced to access a place beyond pain and body and to reach a space where they could meditate and focus on breath and vein, but with institutions like lululemon and power yoga people see their yoga as about perfecting the body and not reaching past the veneer that is the body. Its fascinating and sick really.
Joanna Capello Paul: I appreciate you saying that, Mad Miriam. It makes me feel better, knowing that there can't be such "perffect alignment". I was always, always told that I'd never reach any ideal pose with cerebral palsy. So I stopped. And I found isometrics and just started doing meditative stretching, which was my version of yoga anyway.
Mad Miriam: Next time someone starts to push hard ask them if they practice Ahimsa, it is the first basic principal of yoga and translates into compassion for all living things, if they say "Of course." then tell them you do as well and intimately understand what is most compassionate for your body. Namaste.
Mad Miriam: I think all the wrong people have been foisting their opinions on you. I took up Kundalini yoga last year and the whole idea of it is that through the practice you are opening up channels on your spine for the kundalini energy to come spouting out of the top of your head, I expressed concern that I had a slight scoliosis in my spine and that according to this notion I was ineligible for kudalini enlightenment, my instructor said "No worries, the energy meanders its way around these things, it's like a stream." Thus I go with that notion.
Joanna Capello Paul: Ahimsa, eh? I shall look into it!
I have fallen in love with kundalini energy. I do what your instructor says, instinctively. I don't necessarily do all the poses and moves but I reach for that energy in my own way. Maybe one day you and I could get together and practice in our own imperfect methods?

*****
Copying stuff from other social media sites can be interesting...
brightrosefox: (Default)
...and then you find a blog post like this.
http://autistictimestwo.blogspot.com/2014/09/i-wanted-you.html
And everything you felt about being such, deep inside, comes up and out, and you catch it in a clear quartz prism, and you turn it and examine it, and you hold it up to as many lights as possible. And it is all beautiful and even those cracks and dark spots are beautiful.

People don't always pay attention when an autistic person is killed by their parent or guardian specifically because of words like "burden" and "burned out caregiver" and "mericful" and "for the best" and "couldn't take it anymore."

Like Kelli Stapleton - and yeah, typing her name made me feel a pain in my fingers. I have no emotion for her. I could hate her, but this is beyond hate. No sympathy. Kelli took her 14-year-old autistic non-verbal daughter Issy and attempted murder-suicide via carbon monoxide poisoning, rather than seeking actual help, therapies, and treatments for Issy and herself. And she has a cheerleading section. I cannot wrap my mind around this. People are supporting her, calling her brave, shattered, wonderful, because she "put up with lower-spectrum autism" in her child for so long that she finally snapped. Feel sick? Me, too.
This happens dozens of times a year, more, and rarely is it reported. Now, I didn't know until this past spring, when I began navigating the careful waters of autism activism. I can't swim. And some of my new friends are dragons. I keep a lot to myself. However, I need those dragons, those growling leopards, those night-seeing owls, to make sure I navigate.

The point is that when a neurotypicalm able-bodied person says "I love you because you are amazing because of your disability"... that is powerful. I have never, ever felt unwanted; I had intense, deep, powerful love my entire life. However, my social peers, educators, and adult peers obviously had different reactions.
One phrase I dislike is "Don't let your disability define you"/"Don't let your disability become your identity." I laugh a wry laugh. See, a congenital disability is part of what defines me. A congenital disability is part of my identity. I realize and understand completely when those phrases apply to acquired illnesses and acquired disabilities. But I'm someone who is, as they say, disabled and proud.

So that blog post is a big hug.
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Stuff to remember!

Quote on guarana:
""Guarana is one of those herbs that most people do not know much about, but should, because it is superior to plain old caffeine. The reason Guarana is superior to caffeine is for two reasons in my opinion. The first being that Guarana has more than just caffeine; it also contains two other stimulants in Theobromine and Theophylline. The second reason why Guarana is more effective is because it has different natural stimulants that seem to be released more slowly than regular caffeine so your energy levels seem not to spike and lull as much as regular caffeine. To add on to that, I will say that Guarana also contains Choline which is a powerful nootropic, as it increases mental function because it is a precursor to the vitally important brain chemical Acetylcholine. I enjoy Guarana because it really is an effective herbal Adderall replacement supplement.""

Stuff from Facebook:

I am starting to forget what it's like to have physical energy, like basic adrenaline and muscle strength. It comes and goes. I miss dancing and laughing. Maybe I can do it soon.

Okay. Okay.
It's fine; it's just a lost plushie owl. I'll find it eventually
For now, I can not focus on the bigger owl. I have a tiny owl, and I have that gigantic carnival owl. I also have the snow leopard, the massive carnival husky bigger than my cats, the Ponies, and the awesome Spherical Plushie Bunny. But I am still going to find that white and gray owl. It is so fluffy. You guys. It is so fluffy.

How funny. I looked in my bathroom mirror and wondered which foundation makeup I had applied. I realized I hadn't applied any makeup at all. It was a slightly alien feeling...
Those memes going around explaining "Why I Wear Makeup" and "Why I Don't Wear Makeup" are absolutely beautiful just to me. You know. Do not tell me I don't need makeup all the time. You are not me. I am not you. We can't obviously instruct each other's cosmetic preferences without consequence regardless. I personally need base concealer. Maybe you don't. We are both pretty.
It began with a severe anxiety-driven fear that my skin was covered in destructive blemished. It isn't ending. But it has traveled along a road that has begun healing.
Good enough, for now.

Still full of muscle exhaustion beyond muscle exhaustion. Still in muscle pain beyond muscle pain. However, the rest of the vitamin boosted coffee has kicked it, the moisturizers made my skin feel much more awesome, and the plain cake doughnut I just ate was delicious.
Besides, I have several couches and a bed to collapse on.
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"...Williams died by the claw of the ghastly inner monster that severe depression lodges in the human spirit, losing a long fight with the unholy ghost." -Brain Pickings (included is a link to a book referencing clinical depression to a holy ghost)

In my last session with my therapist, I kept calling depression The Hollow and a Dark Ghost and The Nothing and, naturally, true pure abyss. In such violent howling emptiness, there could be sound and fury, signifying nothing. And sometimes there is just nothing. Fury would be an emotion, after all.
(And I know why depressed people don't tell the tale, lest they be called an idiot. They'll be mocked today. And tomorrow. Tomorrow and tomorrow and tomorrow. And they are heard no more, and as they are poor players, life is but a walking shadow. Out, brief candle. -And people wonder why we get angry when mental illness gets blamed for so many blameless things and things where mental illness is completely not ever the blame. This is why we can't have nice things.)

People always ask me why I cry when I say I am hollow, empty, ghostly, feeling nothing. Isn't crying an emotion? they say Doesn't it mean you feel something? they say. I think Allie Brosh, who wrote the greatest description of depression I have ever read in her blog Hyperbole and a Half, said it best: It is just something that is happening.
Because I don't feel like crying. I'm crying because my body is having a reaction. A symptom, if you will. Something needs to release. Some sort of physiological reaction must occur, lest I literally fade into ghosts.

I understand some of the reasons Robin did what he did. I don't know why he did what he did. No one knows why. No one can know why, because no one is Robin.
People have the same thoughts and feelings and illnesses as Robin had, and they see everything he saw. But none of them and nobody will ever fully purely viscerally know, truly know why he, Robin Williams, the funniest man of a thousand laughs, physically participated in his own death. Only Robin Williams knows.

Cool story, bro:
Someone who survied her own suicide attempt once told me that for her, there was only pain, agony, chaos, and the kind of despair that consumes utterly. Beneath it was a nearly robotic thought process. Any emotional thoughts came from a distance. As she began the process, she became enveloped in a still emotionless sedating transcendent serenity, and time slowed down, and she literally had no more thoughts. Since she was stopped by other people, she couldn't tell me much more. But she told me that during recovery, she experienced every single one of those sensations at once, from the pain and chaos to the calm transcendence. It took a lot of sedatives and intense biofeedback to help her out of that state and she was put on suicide watch again for a few days. They allowed her family to bring in her kitten, which helped so much that she now advocates for cat therapy when treating mental illness. I think of her when I talk to attempt survivors. I only remember her first name and some day I will forget some of her story. But she lives a different life. Not better nor worse, just different. She has learned lessons. She doesn't regret things. She still battles symptoms and switched to a new drug regimen and still does biofeedback. She hasn't had any suicidal ideations in over a year. She also treats her cat like the most important sentient being in the universe, since he helped save her life. Cats are awesome.
brightrosefox: (Default)
Via Facebook:

So, anyway, people seem to be asking over and over and over "Does CP cause X? Is X linked to CP?" and I keep posting websites as replies and I don't know who actually reads them...

http://cerebralpalsy.org/about-cerebral-palsy/conditions/
http://www.neurologyreviews.com/index.php?id=25318&tx_ttnews[tt_news]=206306
http://www.ncbi.nlm.nih.gov/pubmed/19528515
http://www.medscape.com/viewarticle/731306

Also, does anyone have full access to articles from sites like Medscape, NCBI, etc?
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Okay, so the above post on my Facebook has been getting a lot of awesome replies, and I wanted to share it here so people could see what I mean. I'm gonna copy the post itself here. If people's comments show, please don't bug the people.

Here is what I wrote:

So, fellow adult autists: Can we talk about autism comorbid conditions? When explaining the more annoying aspects of having an autistic brainworld to health professionals, the genuinely curious, and people who want to learn more, I've started talking more about autism's comorbidity. Because I have talked so much at length about cerebral palsy's comorbid conditions - which, in fact, can intersect with autistic comorbidities.

Also I ask all this since cerebral palsy is the result of static brain damage; ie periventrucular leukomalacia, which is closely related to, even can be a type of neonatal hypoxic-ischaemic encephalopathy. Cerebral palsy is technically a result of static non-progressive collective brain injury. So cerebral palsy itself stays as static damage, while its many comorbidities march on progressively, causing widespread chronic pain, a sort of premature organ aging ahead of chronological aging, bone and joint debilitation, muscle atrophy, etc - generally beginning in the late twenties, peaking in the mid thirties, and slowly moving forward through our lives.
CP alone is ugly and worrisome, but most research is so focused on children that older adult patients tend to be ignored. It's only recently that adults with cerebral palsy, specifically spastic CP, have been studied. Our systems are... I don't know the right phrase. Degrading? Slipping? Damaging? Certainly debilitating and disabling. As we hit our thirties, many of us do get worse. There has been a giant amount of self-denial in the CP community. It brings up a rallying cry of "I'm strong! I can fight this disease!" except strength isn't the point, you can't fight, and it's not a disease. It's a disability, and it's personal to each individual.

See, I'm spastic and ataxic hemiplegic, but mild enough that I've gotten "But you don't look disabled!" all my life. Even when my left side goes through classic flexion, internal shoulder rotation, toe walking, all very obviously (you see, it doesn't stay like that all the time, hence the mildness. But when it doesn it's obvious enough to get "What's wrong with your arm? Why are you limping so much? Were you in an accident?" comments.
However, the chronic illnesses that developed in my youth that we all ignored because we figured "it was just from CP" have gotten so much worse in my now 35 years. I am in a lot of fibromyalgia communities, for example.

Now! Since autism's comorbid conditions include anxiety disorders, sensory processing disorders, neurological disorders like ADHD and OCD, mental illnesses, epilepsy and seizures, visual problems, spatial problems, depth perception problems, I want to cross-check them with cerebral palsy's comorbids, which include... all of those, plus pain, joint issues, nerve issues, muscle pains, skin conditions.

But fellow autists, please correct me if I am wrong on things. I need to figure out how many of my comorbids are specifically connected to autism so I can sort them all out, charting and making patterns and checking them against the comorbids from cerebral palsy. What are other autism comorbids?
Also, I don't like saying things like "autism symptoms" since this is how I am wired from birth. Like cerebral palsy. So I've been saying "comorbid condition symptoms". Does anyone else do this?
brightrosefox: (Default)
When did the Livejournal layout change so drastically? I'm just getting used to it. It feels kind of like some of the Tumblr blogs I've seen, just less irritating.

New Friends

May. 2nd, 2014 12:07 am
brightrosefox: (Default)
Hallo, new friends. I've been friended by a bunch of people in the past couple of weeks. Could those new friends step forward and comment on how they found me, why they friended me, and if we'd met in another online media or forum? Because, you know, memory problems. If we met on Facebook, can you tell me your name, or at least part of your Facebook name? Cool.
brightrosefox: (Default)
http://friendly-crips.livejournal.com/204952.html
So, the comment threads have turned awesome and have been a ton of fun. We're still rolling. Starting with critiquing Temple Grandin's societal status as "that famous autistic" and moving to needing autistic representation to cerebral palsy comorbidity to mental illness and neurodivergence, this is one of the most fascinating off-topic threads I've participated in.
brightrosefox: (Default)
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!
brightrosefox: (Default)
what is your salad dressing of choice? Olive Oil and Red Wine Vinegar.

what is your favourite sit-down restaurant? Any sushi restaurant.

what food could you eat for two weeks straight and not get sick of? Salmon Avocado Sushi.

what are your pizza toppings of choice? Fresh Mozzarella, Mushrooms, Black Olives.

what do you like to put on your toast? Fruit Preserves - Strawberry, Blueberry, Raspberry, Acai, Pomegranate.

how many televisions are in your house? Two.

what colour mobile phone do you have? Red.

are you right-handed or left-handed? Right-handed.

have you ever had anything removed from your body? Nope.

what is the last heavy item you lifted? A twenty-pound jug of cat litter.

have you ever been knocked unconscious? Yup.

if it were possible, would you want to know the day you were going to die? Yes.

if you could change your name, what would you change it to? Amara Julianne.

what’s your goal for the year? Finish at least one novel and stay out of hospitals.

last person you talked to? Husband, Adam.

last person you hugged? Husband, Adam.

favourite season? Summer. Late Spring To Early summer.

favourite holiday? Summer Solstice, Samhain, Winter Solstice.

favourite day of the week? Monday.

favourite month? May.

what's the last film you saw? Pacific Rim, again.

do you smile often? Always.

do you always answer your phone? Yes, unless the caller is unknown or an obvious telemarketer.

it's four in the morning and you get a text message, who is it? Husband on an out of state job, or a friend needing to talk.

if you could change your eye colour, what would it be? Hazel.

what drink do you get at mcdonalds? Apple Juice.

have you ever had a pet fish? All my life. Still do. Cichlids.

favourite christmas song? Carol Of The Bells, via Trans-Siberian Orchestra.

what's on your wish list for your birthday? Various skin care items, organic shop gift cards, and bookstore gift cards.

can you do push-ups? Yes.

can you do a chin-up? Slowly.

does the future make you more nervous or excited? Nervous.

do you have any saved texts? No.

ever been in a car wreck? Yes, but not damaging.

do you have an accent? Occasionally my born Brooklyn accent.

what is the last song to make you cry? "Breathe Me" by Sia.

plans tonight? Watching cartoons with husband, Adam.

have you ever felt like you hit rock bottom? Not yet.

name three things you bought yesterday: Tara Walker's Dream Brand Night Creme. Michio Kaku's 'The Future Of The Mind". Vitacost brand DLPA and L-Tyrosine.

have you ever been given roses? Yes.

current hate right now? When someone deliberately pushes their own beliefs about medical treatments.

met someone who changed your life? Yes, several: Husband, best friend, several friends made online.

how did you bring in the new year? Very quietly and gently.

what song represents you? Currently: "Queen Of My Heart" by New Model Army; "Ballad Of Bodman Pil" by New Model Arny; "The Whole Of The Moon" by Mike Scott And The Waterboys; "The Return Of Pan" by Mike Scott And The Waterboys; "Trip The Darkness" by Lacuna Coil; "Blank Infinity" by Epica; "Storm The Sorrow" by Epica.

name three people who might complete this? Dunno.

what were you doing at midnight last night? Struggling to fall asleep.

what was the first thing you thought of when you woke up? The pain in my hips.
brightrosefox: (Default)
This is especially for[livejournal.com profile] naamah_darling because it talks about how powerful and precious internet communication is especially for disabled people.

http://palsycorn.livejournal.com/2269.html

She is one of my dearest friends. We met on a Facebook support group for people with cerebral palsy. She is the creator and head moderator and she is amazing. She is studying Disabilities Studies in college, she adores SF/F and is writing several stories and at least one SF novel with disabled superheroes, and she is the reason I am so down with being a crip, cripple, "ceep", etc. I love her.

Quote:

"I am a multiply disabled person. Phone calls require a type of mental, physical, and emotional gymnastics for me, which I seldom, if ever, have the spoons for. I have severe phone anxiety which I smash down and stuff deep inside me when I absolutely have to make a phone call. The anxiety is managed somewhat with the help of scripts (particularly helpful if I have to call to make an appointment or something, I write down exactly what I'm going to say, and approximate what the other person is going to say), and has gotten slightly better since the advent of cell phones (that way, I know that no one other than the person I want to talk to will pick up). But it is still VERY there. On top of this, I have to smash a phone against my ear and fight not to drop it, something which I do with alarming frequency, because my hands do spazzy things. This phone, which is usually supremely uncomfortable, because no one considers how it's going to feel when it's held against an ear when they make a cell phone, will have to be nearly glued to my ear for however long the call takes, requiring my arm to be held in an awkward position for that long, which, like most things I do with my body these days, will result in pain. Finally, phone calls require communicating verbally, and like many people with CP, I find it exhausting to coordinate the muscles needed for speech and still make my words clear enough to be understood. Put that all together and you start to see why I feel like I've ran a marathon after a long phone call."

YUP.
brightrosefox: (Default)
Did you know that for eyeglasses, Rose photochromatic tint helps reduce glare, eyestrain, headaches, and migraines, and helps enhance and sharpen contrast and is good for outdoor activities like hunting and fishing and stuff that calls for a detailed eye? It's like this tint was made for me. My frames are 410319 in Pink. They're small and oval and child-sized, and they fit me perfectly without being too small.
http://www.zennioptical.com/410319-full-rim-stainless-steel-light-weight-same-appearance-as-frame-8103

I swear this is totally not a shill or something. I just think that if I'm going to buy eyeglasses online, this is the best place. The frames are made extremely well, the prescription lenses always come out perfectly, the photochromatic tints work wonderfully, all the pricing for everything is awesome, and I save well over half the money I might spend in a store. Shipping takes just over the length of time it takes to wait for new glasses from a store. I am pleased.
brightrosefox: (Default)
'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.
brightrosefox: (Default)
http://www.smbc-comics.com/?id=3267

...well, this hit me like a rock to the head. Beautiful and profound. I applaud and I also agree. And this, right here, THIS, THIS is why I don't agree with so many so-called self-help happiness programs. Someone else's source of happiness can never be mine. Ideas are always lovely, word of mouth is a great idea, teaching personal knowledge of happiness is wonderful. But nobody, ever, can tell me how I can find my happiness.
THIS EXPLAINS IT.
BRB, having a moment.

The comic )

You know what it makes me think of? The ugly smugness of those particular people who think that if they just avoid negativity, don't get angry, and insist that we stop "being so angry" and how they seem emotionally superior, a sort of moral superiority, but so insidious. Because it's like the difference between having had a rock in one's head with the rock being dislodged and not having had a rock in one's head at all. If you don't understand someone else's different perspective, there is no fucking way you could truly understand where and why they are feeling how they feel.
It's the way Zach wrote about the difference that the students could not feel, since they never had the teacher's experience. And the teacher couldn't teach the teacher's experience because it was in fact unknown and unrealized. And so the teachings were in fact merely the teacher's perceived feelings and ideas. Which is very nice, but... it's more empty than fulfilling.

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