brightrosefox: (Default)
I did all my specialized personalized modified physical therapy exercises: The modified individualized Cripple Yoga with gi gong and isometrics, the stretching sets and cardiovascular sets, the strength training sets.

Now my body is ready to fall apart, lose consciousness, and catch fire. I hope I don't have those awful dreams in which my higher mind tricks me into thinking I am "healed" or some shit.

To head off any comments: When a person has various disabilities that are neuromuscular, muscuoskeletal, neurodevelopmental, and related to chronic pain of all kinds, healing exercise and healing workouts do not solve anything. There is no magic energy flow strong enough to tweak symptoms, syndromes, or conditions for the better. All it can do is slowly, carefully, mildly soothe and smooth out the cracks little by little. I'm going to fall over after I work out. It's going to take time and more, new pain. It's a cycle.

I already take [supplements that help with post-workout fatigue, with pain, with achy muscles]. I will list them if there is interest. No need to suggest anything. Eventually, I will feel mildly better, even though spasticity and hypertonia will just force everything back to normal, and then I'll need to play the game of "Is it palsy spasticity reset or epileptic seizure aura?"

This is an announcement: If you see someone with a disability like cerebral palsy and they are preparing for any kind of workout of exercise, don't make assumptions that they will automatically immediately need help from you. They know what they're doing, how to do it, why to do it. And they will ask for help if and when they need help.
brightrosefox: (Default)
Holy random acts of kindness, Batman.
After getting my flu vaccine, I went to look at the cane rack, because they have this beautiful blue and silver one that looks like dragon scales, and I have been waiting for discounts and coupons so I could get it. The price is under twenty dollars, but still.
A middle-aged man who looked so much like Idris Elba that I did a second take, also reached for the blue silver cane. Our eyes met, I smiled briefly. He said, "You know, I bet this would make an awesome magic staff for cosplay."
I grinned and said, "Good plan! I should at least join a game just so I can brag. Or just be my paganish elf self and cosplay every day." Which was blurted out because my filter is so thin.
The Idris Elba lookalike chuckled. "I adore that idea. I just pray to all mighty Atheismo that we aren't going too deep. Like that Tom Hanks movie."
My jaw dropped. "Duuude," I said. "Futurama reference plus obscure D&D rip-off movie nee book reference? Cripple high five!"
We high fived and missed on purpose, stumbling. "Mild cerebral palsy, spastic hemiplegia" I said. "Mild cerebral palsy, diplegia mixed," he said. "And knee arthritis."
"And sciatica," we said in union, surprising ourselves.
"Fibromyalgia and epilepsy and autism too," I added.
He said, "My twin nieces are autistics! Their world is so awesome. I think they prefer me to my brother when they're in meltdowns, they talk about what's going on in detail."
"Awesome!" I said.
At this point, we had been staring at the canes and I had been avoiding too much eye contact. I was about to ask the Idris Elba lookalike about advocacy. Then I saw a gleam in his eye and sensed a topic shift. "Hey, listen," he said. "I'm a proponent of the pay it forward thing. I know we're strangers, but I do know enough about you that you really want the dragon scale cane."
I tilted my head. "Yeeeaah?"
"So, okay." He pulled some pieces of paper from his pocket. "I've got a buy one get one half off for this brand of canes. I will buy you your cane. What do you think?"
I blinked a few times. I looked at him. He wasn't hitting on me. He wasn't being creepy. He was just a fellow cripple offering help.
"Okay," I said, "thank you! That's really kind."
"Hey, the community needs all the assistance we can get from each other. Cripples helping cripples, you know?"
I smiled. "Totally."
As we walked to a register, he said, "I want you to know that I had no intention of hitting on you. I see your rings, and for all I know they could mean something else. But while I think you're a gorgeous-looking person, I have no plans on being a That Guy. I punch Those Guys on a regular basis."
"Huh?"
"Physical trainer. Not so much punch as pinch in sensitive areas. Men can be scum."
I giggled. "Hashtag Not All Men!"
He laughed. "Anyway, let me pay for everything." He nodded at my basket, which had a few comfort items. I immediately said he shouldn't, since he was getting me the cane.
He then put my basket on the conveyor belt, looked at me until I noticed that his eyes had gold rings, and said, "Then pay it forward. Help another cripple." The corner of his mouth turned up. "Even if it's just donating to help someone get better access."
I nodded. I was going to cry any minute. He paid for everything, put his things in two totes and put my things in two more totes. He saved me almost forty dollars.
He said, "I would offer you a ride, but my friend's picking me up so we can go back to Philly. It's been a great road trip so far."
I nodded. "It's cool. I'm going to take the bus home anyway." I was feeling giddy. "Well, obviously we had this encounter for a reason. So. It was lovely meeting you, clone of Idris Elba."
He threw back his head and laughed. "I get that a lot. Same to you, clone of Mia Sara. Anyway, I'm Laurence."
"Joanna."
We fist-bumped and he helped adjust my cane for my height. We walked outside together, and he stood at the curb to wait for his friend while I walked across the parking lot. I turned and waved. He waved back and kept looking at me. I realized it was to make sure I was safe.
I got to the sidewalk crosswalk and peered back. I saw him get into a green SUV. I realized I would probably never see him again.
I am definitely going to Pay It Forward.

***

Also! Links! For future reference!
http://www.neurodiversity.com/main.html
http://cerebralpalsy.org/about-cerebral-palsy/associative-conditions/
http://www.disabilityscoop.com/2013/10/03/autism-common-cerebral-palsy/18775/

***

Also!
PMS is vicious. Although with oral contraceptives, it's technically withdrawal bleeding rather than menstruation. Besides, I haven't truly bled in over a year. Being on the highest dose of birth control for over fourteen years will do that to some women.
PMS is vicious. A veliciraptor chewing through my pelvis. There's a photo out there of a plastic female human skeleton, with a toy raptor stuck head-first through the pelvic bone.
And the bloating and bizarre fluctuations on the bathroom scale.
Having slid back to psychiatric anorexia after failing to control neurochemical anorexia, I know damn well I should not stand on that scale especially during this time. I know damn well that numbers don't mean as much as how my clothing fits. But paranoia bred from life-long anxiety over disordered eating patterns is paranoia. And then there was the entire food=growth=death connection when I was little. And then there was being under a hundred pounds until my mid-twenties. And then there was the anorexia voices insisting that I needed to get back to that, being under five feet tall. I was never overweight. I used to weigh something around the high "set point" - but I have no idea where I've constructed this memory of being convinced to lose twenty pounds. Unfortunately, my illness has burrowed deep enough into my subconscious that my thoughts have turned to the classic hallmarks of anorexia: "I absolutely must be below X number or I will never feel right". The unwillingness to stop. The belief that everything is wrong. I know where I am. I know what's happening. I've been able to compartmentalize and separate enough so that I smack myself when those thoughts occur, so that I at least eat an apple or two, or cheese, yogurt, celery, even cheesecake or dark chocolate. My friends are with me.
Sag Harbor will happen next week, with Thanksgiving. Part of me is in a total blind mute panic. That part doesn't want to eat anything. That part wants to Be Good, Be Perfect. It doesn't matter that I'm over thirty, says the panic. It only matters that I am extremely small and I must keep being extremely small.
To bring everything around again: PMS is not helping. PMS is several numbers upward on the scale because of fluid retention, bloating... losing that fight to not overeat. PMS is barely fitting into the purple dyed jeans yesterday and having them slightly loose today. It isn't helping anything.

But I look at that blue and silver dragon scale cane, bought for me by a total stranger with the same disability as me, and I think the best way I can Pay It Forward is to make sure someone I care for stays as mentally healthy as possible...
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)
'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://thebodyisnotanapology.tumblr.com/post/76223694483/inspiration-porn-where-gawking-guilt-and-gratitude

Excerpt:
In “The Politics of Staring,” Garland-Thomson creates a taxonomy in which disabled bodies are represented in popular photography according to four different categories, one or more of which can be present at any time:

1. The wondrous elicits admiration or astonishment at the disabled person by juxtaposing what is considered an extraordinary body with pedestrian surroundings, bringing together the exceptional with the ordinary. Among its many problems, this particular approach has the impact of making disability look unusual and distances the viewer from the fact that disabled bodies are relatively common (Garland-Thomson 2002, 59-61).

2. The sentimental elicits pity at perceived suffering and arouses a humanitarian desire to help and to feel oneself sympathetic, kind, and noble. As Garland-Thomson points out, this genre grew out of “the larger nineteenth-century bourgeois culture of fine feelings” in which “[t]he pathetic, the impotent, and the suffering confirmed the Victorian bourgeoisie by arousing their finest sentiments.” (Garland-Thomson 2002, 63)

3. The exotic dramatizes disabled people as though we are alien life forms and uses, in Garland-Thomson’s words, “the hyperbole and stigma traditionally associated with disability” to sensationalize images of disabled people as disturbing and larger than life (Garland-Thomson 2002, 69).

4. The realistic attempts to erase the difference between disabled and nondisabled people by hiding visible indicators of disability and “normalizing” disabled people (Garland-Thomson 2002, 69).

Most visuals communicate different messages based on the context in which they appear and the text that accompanies them; these differences are especially striking when it comes to the ways in which images of disabled people are purveyed.
*
This is partially why I loathe the phrase "if they can do it, anyone can do it" because it creates unrealistic expectations, it puts a ridiculous onus on both the disabled people and the non-disabled people regarding inspiration and hard work, and it is essentially painful and insulting. When disabled people say, "If I can do it, you can do it" I honestly feel like slapping them, then headdesking, because it is such a tired, old, offensive cliche all around. It is internalized inspiration porn in a way, when said by the disabled, especially to each other, and especially when there is extreme difficulty standing in the way. I I like to say, "These things are possible depending on varied circumstances, and it is worth it to try."

***
And now, this, as I said on Facebook.

So, here's the thing.
Since realizing I am actually autistic, I have actively read blog posts from other autistics that were extremely angry and that were absolutely damn right to be angry. Because in a world where autistics and other disabled people are being discriminated against, injured, abused, damaged, and even murdered under the guise of people insisting that they know better, being angry and outright yelling is one of the only things that will get the world to listen to us, to see how much we need support instead of prejudice.
Now, I have seen so many comments saying things like, "this is a great blog post, but you shouldn't be so angry" or "you should calm your anger and figure out why your heart hurts so much" and basically condescending platitude-inspired hippie-like comments that truly don't get what is happening.
And it doesn't help. Disabled people need that anger, and able-bodied people need to realized and embrace our anger. Because anger helps us, anger keeps us going in many situations. Look, I have a hippie mindset. I love holistic medicine and dancing with nature and wearing shiny jewelry that I believe has power. Buy you know what? I do not need to calm down. I do not need to stop being angry. I do not need to listen to my heart and soothe myself. My heart has already spoken, and it is full of rage at the facts: The disabled are persecuted in so many ways. Autistic children are being abused with therapies that are hurting them, by parents who insist they know what is best. I will not and can not sit and take deep breaths and soothe myself when I deserve to be angry about teenagers being killed by their mothers for having different brains.
I won't be quiet. I won't be calm. I won't stop feeling angry until I am ready to stop feeling angry.
So, if you read something from me and decide to help me not be angry by quoting platitudes, deciding that you are emotionally and morally superior because you are not angry... stop. In fact, it will anger me even more if you play with emotional superiority. The last time that happened, I mentally punched the person in the mouth. Several people wanted to punch the person, in fact. I don't want to punch you in the mouth. Please, let me be angry. Let me express my feelings about be disabled and chronically ill in a society that hurts people like me. Don't paste a smiley face in a comment and tell me that my feelings aren't helping me. Don't paste a smiley face and tell me that I'm too negative. Don't talk about rainbows and Positive Thoughts TM... not unless I ask for it. I need to feel angry.
-Brought to you by the anger upon seeing disability activists being told to stop their anger, be more peaceful, and think more positively.
brightrosefox: (Default)
Copied from Facebook, because it should be put here.
*
My neurologist is hilarious and awesome. And she thinks the same of me. We're gonna schedule a brain scan. And we traded quips and jokes about why the he'll I didn't get diagnosed autistic until last year. And she agreed that I am badly stressed and depressed for no reason and she desperately wants to help, and she wants to increase the Zoloft a bit to see what happens, and she's very pleased that the passion flower is helping me sleep, and she cares so much it makes me cry. She hugged me when we were done.
I told her that I feel like I'm on another planet with super caring doctors who really help, and she looked so empathetic and almost upset about the lack of such support. I heart you, Chang Ching Debbie Lin, super neurologist and friend to patients.
*
And here I thought they would take more blood. I must remember that the good veins are in my right arm. I'm impressed I was able to watch both arms being poked. That was a big needle.
*
And of course I tripped and fell flat on my knees and shins while walking through the grass. As I was using the cane to slowly get up, I heard a woman call out, and then a hand was on my arm. She asked me if I was okay, and asked if I was going to the bus stop across the street. When I said yes, she held my left arm and helped me the whole way and stayed until we were sure I was okay. Then she went back across. Funny thing was that we were right next to both the hospital and my primary physician office.
I'm home now, and both my legs are bruised, and I'm all stiff and annoyed. But the look of concern on the woman's face made me grateful that people care enough...
*

Indeed, it's never big things, never major or massive emergencies. It is just several little things, one after another or at the same time, building up day after day, never stopping.

Dr Lin Super Neurologist has written "chronic stress disorder" on the list (right next to intractable epilepsy, insomnia, cerebral palsy spastic ataxic, and myalgia as doctor-approved medical issues on that lab test print-out I took to the lab that took two vials of blood). When she had touched my shoulders, she had exclaimed, "Ohh, you're stressed. These muscles are far too tight, even for the cerebral palsy." We joked back and forth - I said, "You know those internet memes that tell you to think positive thoughts to eliminate stress? I hate those." And she said, "It's exactly like saying that the best way to treat a stress-related disease is to get rid of stress. Helpful, isn't it?" - and she was genuinely worried.
She gave me those physical tests where I had to push against her hands with my hands and legs, and my left side barely responded, and I watched her mouth turn down and her eyes fill with sympathy. When I said that my medications were working very well for what they had to work with, she was almost gleefully relieved. She does want me to see a psychiatrist, and she thinks increasing the Zoloft may help mitigate some stress with its ability to handle more than just depression and anxiety. She was happy to see me able to genuinely express my sense of humor, and she liked that I called my depression episodes "hollows". I truly feel better for having seen her and for scheduling the six-month follow-up. Brain scan ahoy.

I know so many people with intense diseases, disorders that must be monitored and treated with porcelain delicateness, with multiple medical conditions that leave doctors stunned and astounded that these patients are still alive. This is why I don't like to compare. This is why I hate playing games, even though sometimes I find myself pain-bragging without realizing. My small, numerous, chronic daily medical issues are nothing next to something as huge as, say, cancer or MS. But they are annoying.

These varied, various, multiple little pains and problems are indeed growing and they are quietly and slowly debilitating no matter how many Happy Thoughts tm I throw at them, and they will be with me for the rest of my life, and I will work with them and treat them as best as I possibly can, and I am doing my best to turn away from insistent voices that cry about magical panacea drugs/herbs/exercises and seek out whatever magic works for me, magic or not. And all I want to do is reach out and hold the hands of those who are being struck down with health problems no matter how many times they get back up, who get back up no matter how many times they are struck down, who just want to rest.
I just want to rest.
brightrosefox: (Default)
So... there is that whole thing about "I am having a medical depression episode, I am medically anxious, I am in severe a chronic pain fibromyalgia flare that rates an 8 on Allie Brosh's pain scale, my spasticity is out of control, my hypertonia along with ataxia is interfering with my ability to balance, I'm very dizzy, I'm in a mental fog, I keep thinking of how Rose-kitten died and I start getting choked up, my joints ache and throb so much that I want to become a cyborg right now..."

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

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

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

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

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

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

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

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

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

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

But for me, everything is a cycle. I will never be free. I acknowledge that my entire life, literally, is, was, and will be about recovering from trauma. I have tools to work with. I have doctors who understand me. I have taken all my medical problems on with my own personal arsenal, and I know better than any of the people who dislike my methods how to work with, on, and despite myself. I have my girls, my spirit guardians, my coping mechanisms with human faces, the parts of my brain formed from fictional characters that allow me to handle different parts of my trauma. And so I keep going. Trauma is a part of my life. And that is okay.
brightrosefox: (Default)
Thanks to another trip to Michael's craft store, I have a new set of Faber-Castle Pitt artist pens below Fine, and Calliope has a Beanie Boo dolphin to cuddle, which she has been doing. I have an owl, which seems to work well as a knee pillow.

We went to the nearby Whole Foods as well, where I found my loved chocolate hemp milk, Guayaki Yerba Mate energy shots in Lime Tangerine, Orgain Chocolate Nutrient Shakes, a bottle of Acai+10 Superblend with Seabuckthorn and Mangosteen, and the rare Badger Balm large Lime lip balm. Adam picked up some fabulous cheeses, and a Coffeeholic Cream Cake for me.

Mom called to chat about an NPR medical science podcast about migraines and the placebo effect, and I revealed that forty percent of my smaller headaches can be slightly reduced by intense meditation after taking certain supplement pills. Good talk. Doesn't work all the time, doesn't work for the more intense symptoms, but I know how powerful placebo effects can be for mild and minor pains sometimes.

Luna and Calliope seem to be starting a... well, a tolerance, on Luna's side. As long as I give Luna attention first, she is nice to Calliope during cooperative play, feeding, brushing, etc. As long as Luna Moon knows she is still the precious queen and Calliope Io is submissive, there is peace. And Jupiter has been gently playing with Calliope, with the occasional soft bap on the head. I am pleased overall.

So, while at Whole Foods, I was limping down an aisle with my blue aluminum cane, right behind a tall man who had the same cane, in sparkly black, and we smiled at each other. "So, how are you?" he asked. I said, "Oh, well, the back pain and sciatica are acting up. How about you?" "Yeah, I'm going to need hip replacement and knee replacement soon," he said. "Oh, ouch," I winced. "I can't imagine. I mean, I'm 34, I was born with cerebral palsy, I'm still learning how to use this," holding up my cane. He nodded. "Yeah, my whole left side has been crazy for years." "Oh, mine too! I have spastic hemiplega on the left! The chronic pain has been getting worse for a long time, but I don't need surgery. Yet!" We grinned at each other. He looked around forty or so and over six feet. I could see right away that his joints were bothering him. "Well," he said, "You look absolutely lovely!" I smiled widely and said, "Thank you! You too!" He grinned back and thanked me, then said, "I hope the pain reduces as much as it can." And I said, "Same for you. Good luck with the surgeries." We said our goodbyes and hobbled off. It was as though we had been friends who hadn't seen each other in a while, commiserating in that cripple language that stays away from "Feel better" and steers toward "I hope your symptoms ease up" which, well, we all understand in the chronic pain community.

And that got me thinking. People tell me "You look beautiful/lovely/great" and of course the silent "even though you're in pain" follow-up. And I actually honestly don't mind that at all. It isn't an insult to me. I know they're usually talking about my chronic pain specifically, not my disabilities as a whole. It's an unspoken thing - "You're chipper and glowing and not letting the pain show, rock on with your badass self." I know that so many cripples would see it as a back-handed compliment and insult, because it totally can be. But for me... I guess it lifts my spirits, especially and specifically when a fellow cripple says it and even able-bodied people who may have invisible illnesses. It is something I need to hear from other disabled folks, because even when I think I look hideous and shitty, to hear someone tell me I look great despite my pain makes me happy, which in turn makes me feel psychologically and psychically better, which helps me try to combat the symptoms, etcetera.

So, my fellow chronically ill and disabled folks, how do you react to such a comment? Is it an insult or backhand compliment for you? Is it a lovely compliment? Do you view it differently when it is said by other chronically sick and disabled people as opposed to able-bodied people?
brightrosefox: (Default)
I randomly swam through my bedroom closet and found some house slippers and coats. I wish I had waited until my neck and skull muscles had relaxed and loosened enough, but oh well. Winter coats! I almost curled up in the closet for a nap. The thing about OCD (true and evil, not the icky "fake tee hee OCD") is that I know I am insane and that I need to help myself, but the compulsions just keep slamming me down. Which means I need to do this bit by bit. Minute by minute literally. Coat. Purse. Shoe. Matching shoe. Large black trash bag for charity. You know how it is. Even the panic moments. And then the ADD SHINY. I think the biggest bone of contention between me and my spouse is my extreme messiness. I admit it. But oh, that closet is comfy, and I essentially know where things are. After I flop like a child in a ball pit. Stimming! Oh my gods. It's stimming! What. I. Didn't even. Huh.
Should... should I... can I call myself autistic? Officially? Or should I keep calling myself borderline autistic? I don't knoooow. I don't care what people think, that's not the point. The word "hypochondriac" just makes me laugh and wave my hand in a Feh Motion.
Oh, the coats. The sweet comfortable winter coats. And hangers! I found hangers! I shall obsessively put the two things together all over the house, because I spaz ridiculously in winter and the Raynaud's Disease is sheer torture.
I am flapping and hopping from one foot to the other and making "Whee" sounds because I am organizing in a Joanna fashion. Oh my gods, I really am on the spectrum. How did I not know? This changes absolutely nothing on the outside. Inside my mind, though... Wonderland has opened a whole new portal.
So, an autistic friend asked me, "Does the word Autistic feel right? Cuz I sure as shit am not going to tell someone they 'aren't autistic enough' to ID as Autistic. And it's a culture, not just a dx. And I could have written this. Especially the compulsive going through the closet god I have no business doing this my body is saying HA HA FUCK YOU thing."
And I replied, cautiously, "...yeah, the word Autistic feels right. Yeah. And the culture thing also feels right. I think the only reason I've been hesitating is because everyone who knows me knows I already have so many medical issues that this is just one more issue to put on my doctor list - and some people might accuse me of "collecting medical conditions like stamps" to which I take annoyed offense. Not my fault my brain is screwy. I have Things in my brain. It is important to know what All The Things are. I've given up on the closet so far. Like, truly, NOPE. But it is still there, waiting to love me. So yeah."

Yeah, I'm happy. I've had some friends from CP groups, epilepsy groups, autism groups, and fibromyalgia groups inform me that my consistent posting about what I go through is helping them learn more and more about themselves. It turns out that I am becoming a role model. People are thrilled to see that I am so open, honest, willing to reach out and connect and share what I know.

-"You make me feel better when I worry about what is happening to me."
-"I love talking with you because you don't care about all the horrible stuff, you just want to know who I am."
-"Thank you for accepting me and talking to me. You're one of the few online people I feel like I can chat with and not feel rejected."
-"I'm so amazed and impressed by you. You are devastatingly intelligent and beautiful, you never let your disabilities completely overwhelm you, and you are able to reach out and ask for help when things get rough. You inspire me to be a better person."
-"You are so genuine and open. You really want to help people. You don't want to play a character on the internet. You're so refreshing and generous."
-"You have this strength that I've never seen. You can be in insane amounts of pain that would bring any man to his knees and you smile and raise your head and you keep going. You never lie - you say how you feel but you also temper all that pain and hell with beautiful, positive things."
-"You're one of my favorite disability advocates. You're like an idol. You don't hold back. You have almost two dozen medical conditions, and you are happy to talk about them, and you also know when to tone it down. You don't give a fuck when someone is angry at you. I want to do the same thing. Keep being you."
-"I love your power. I love your voice. I love your entire mind. I love how you approach every new medical issue with grace and understanding. I love that you can joke and laugh even when you are sobbing and struggling through the worst of depression and panic. I love that you refuse to project false positivity that you don't let true negativity destroy you. You shine like a beacon in the night. You, as a spiritual being, are extraordinary. You, as a disabled human, are beyond extraordinary."

And here is the funny thing: I do not believe in myself. I do not feel beautiful or inspirational or intelligent or confident. I KNOW all of this. I am very rational. I know, intellectually, that all these things are true. But emotionally, I am shy and scared and worried and upset and not at all confident, and I don't like myself enough to believe. I don't fish for compliments, because on an emotional level I don't want to cry, "Tell me I'm pretty! Tell me I'm awesome!" I know I'm pretty, and I know I'm awesome. But feeling it and believing it is another level of comprehension. You know? You know.
brightrosefox: (Default)
This is one of the most wonderful articles ever.
http://disruptingdinnerparties.com/2013/09/26/modeling-consent/
"Rape culture tells me that men always want to just “get the sex”, so naturally, I was shocked that he chose to risk “getting the sex” by verbally checking in. “Checking in” is a part of consent culture that is very easy to dismiss. It’s easy to tell yourself, “Oh, I already asked about that. They said they were ok” despite picking up on body language or other signs that would tell otherwise."
-Stuff I Did Not Know About
And:
"Consent culture doesn’t have to be limited to sexually charged situations. Pretty much any situation where you are interacting with people is an opportunity to check whether the other person is OK with what you are doing. Eg: “Would you like to walk there together or did you want some alone time?” “I’d like to talk about this with you. Is now a good time?” “This conversation is getting pretty intense. Are you OK with continuing on this topic or would you rather talk about something else?” I think it’s really useful to do this kind of negotiation in any kind of interaction, sexual or otherwise so that everyone feels like it’s OK to express their boundaries. Partly because it makes those interactions more safe and enjoyable for everyone in themselves and also because it feels more natural to continue in that way if things do become sexual later."
-Stuff I Want Happening Right Now (so that people can ask me if I want to be left alone when I want to be left alone)
And:
"I appreciate consent to the point that I often take a “protector” role at parties as I maintain more of my sensibilities while inebriated than many of the people I know. That being said, if two people can read each other without words, there is NOTHING wrong with exchanging a kiss without asking for it. If one person can’t read the other accurately, there is an issue with either the kisser’s perception, the kissee’s sending of signals, or some combination of the two. There shouldn’t have to be a textbook for organic, natural encounters. While everyone is entitled to their private space and shouldn’t be taken advantage of, if someone is wearing an alluring outfit at a dance club that advertises how sexy it’s customers are, that probably isn’t the kind of place to not have an awkward lean-in after some dancing (which is often close and arousing anyway). Signals are just as important as perception, and basic, decent, human respect is the most important thing of all, with communication, verbal and otherwise, at a very close second."
-Stuff I Hope Everybody Understands Fully And Respectfully (meaning that if you cannot read a signal, inquire before moving forward)

And I feel horrified that I did not realize there was an actual consent culture, because rape culture has been so prevalent...
brightrosefox: (Default)
You know how people who work out a lot always say things like, "Wow, that workout class of my choice was intense! I'm going to be so sore tomorrow I don't think I'll be able to sit down!" and then they go do it all over again and again and they keep talking about their horrifically sore stiff painful muscles and how it's going to help them get in great shape no matter how much it hurts?
Yesterday afternoon, I walked two miles between picking up my prescription, getting lunch, and strolling around the neighborhood. This morning I woke up in excruciating gruesome pain, and now my entire lower body doesn't want to move. My legs, hips, and knees have decided that unless I have my cane on me, I cannot walk.
Where is my special prize? I though we got prizes for sore muscles.
Please, fully healthy able-bodied person who works out every day and treats post-exercise soreness like a badge of honor, tell me why I should feel sympathy for you.

See, this is why I sometimes feel slightly triggered if a friend talks about how painful and excruciating their extreme exercise regimen makes them feel, especially if it's like bragging. You know. P90X or Yuppie Boot Camp or CrossFit or Zumba or Power Yoga or Dance Yoga or AcroYoga or anything combining yoga with anything or anything combing dancing with anything. You're relatively healthy, you exercise like crazy until oh dear, you are in so much pain you can't walk, ha ha, and you keep doing it and sometimes you laugh and attempt to compare yourself to a disabled person until your workout pain fades and you do all that healthy working out again.

(Also, I will never stop saying how sick and tired I am of hearing about Snobby Yuppie Yoga Workout classes. I get it, you stretch and expand your mind and you exercise at the same time; good for you; now put your mind back in your brain. Stop telling me how yoga can help me and why. Stop. Just... stop it. My mother (who casually teaches old ladies kripalu style disabled yoga) does that for me over the phone very well because we're the Gilmore Girls with more bickering and we do that kind of thing.)

The point is: Having physical disabilities and chronic illnesses means living with certain limitations unique to each individual, no matter what. People in wheelchairs do exercise and yoga, people with breathing problems take dance classes, people with semi-paralysis take martial arts, etc etc... and everyone finds a way to raise their own limits while compromising and compensating to fit the workout to them instead of fitting themselves to the workout. Unfortunately, not all of us are able to do this in a class setting or even a group setting for whatever reason.

So. When I say that my body is in horrible horrible pain from extremely simple, quick, easy working out after you say the same about extremely intense, slow, difficult working out, a tiny part of me runs off and cries.
The story:
When I was very little, I took gymnastics to try and help with the cerebral palsy. I lasted one year. I excelled at parallel bars and rings and anything that put me in the air. But I could not do floor exercises or balance beams. When I was a teenager, I took tai chi. The master was sixty and looked thirty. I was the youngest student. I kept making the mistake of following the master and not accepting my body's limitations. The master forgot that I was disabled. In the end, I wound up handling a few injuries that led to permanent sciatica and the master was so horrified that he offered to help me recover and to pay for doctor sessions. When I was in college, I took a few simple, mild exercise courses, and after every single one, while the other students were high-fiving and laughing and feeling energetic, I was curled up trying to hide my tears of agony. The first few times I tried even basic yoga, my entire body rebelled and screamed negative things until I meditated and listened and learned what was better for me, which led me and my mother to develop a highly modified version that was almost not yoga.

The point:
I have limitations with my disabilities. Do not tell me that I have none. Do not tell me that the only limitations are in my mind. Especially do not (ever) tell me that the only disability is a bad attitude. Back off and let me do what I do and make gentle suggestions here and there. Offer to help me stretch a little more and steady my arms while I lift a heavy thing. Help me stretch and flex my legs when I do my physical therapy. Do not whine to my face about how sore you are after your dance yoga power ballet spinning acrobatics martial arts class done in a well-lit air conditioned crowded room blasting out hip pop music. You chose that. You wanted it. You had the ability. Any pain you endure will fade and you will continue your workout readily because your pain means strength. You may even try to compare your temporary workout pain to a disabled person's chronic pain - good luck with that.

I dream about dancing. I dream about being a gymnast. I dream about mastering tai chi and qi gong. I do my best every day to make small, gentle, careful moves that point in all those directions. I don't push my limits. I raise my limits so that I have farther and deeper to go before I reach those limits. And it is going to take a long time. I have to be extraordinarily careful so I don't trigger various symptoms. I only look healthy.

So go on. Go do your Power Dance Acro Cycle Pilates Trampoline Athetic Yoga Karate Class. Rip up your muscles so they can knit together and become stronger. Be strong. Be intense. Be powerful. Be proud. Fuck it, be arrogant and condescending. You deserve it for all that hard work.
Just don't tell me that I can do all these things you do with ease and don't tell me I have no limits and don't tell me that I'm just challenged or differently abled. Do not insult me. Just talk to me. Then, if I ask, work gently with me.
brightrosefox: (Default)
In the past week, I have learned some fascinating things about cerebral palsy that I honestly never knew and which truly puts many things into perspective.

1. We tend to exert more energy than others - around 3 to 5 percent daily.
2. We tend to have higher, faster metabolisms. For some, this can lead to clinical, neurological "nervous loss of appetite" - not always the eating disorder, but an actual screw-up between signals being sent between the brain and the stomach. Some of us do develop eating disorders at some point in our lives.
3. 75 percent of us will lose our ability to walk by age 25, or at least we will begin a slow decline, and of that percent, most of us will need walking assistance devices such as canes, no matter how mild the cerebral palsy.
4. After age 30, most of us will begin to rapidly decline physically, neurologically, physiologically, and psychiatrically. Our neuromuscular and musculoskeletal systems will quietly suffer and lead to conditions like fibromyalgia, arthritis, neuralgia, migraines, TMJ, sciatica, seizures, sleep problems, and breakdowns of connective tissues.
5. A vast percentage of us have clinical depression, anxiety disorders, bipolar, and other major mental illnesses.
6. A huge percentage of us have sensory processing disorders, spatial relation difficulties, and memory problems that can get worse after age 30.
7. Even the most mild cases of CP may wind up needing permanent care and assistance by age 60.
8. No amount of exercise, yoga, dietary changes, nutritional boosts, positive thinking, holistic treatments, or pharmaceutical treatments can completely slow the progression of syndromes and disorders comorbidly associated with cerebral palsy. While the damage done is static and non-progressive, the repercussions from that damage will continue to affect the brain and body for the rest of the patient's life. It is not our fault, we cannot and must not fee guilty or ashamed, and we must learn that it is completely all right to ask for help.

***

Excuse me, I need to go cry quietly for a while.
You know my phone number if you wanna call and chat. If not, and you wanna chat, message me. I'll probably be crying.
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)
So, a lot of people have been asking me what beauty products I have been using on my skin lately. Might as well link to it.
These products have, quite literally, every single ingredient I ever wanted. Every. Single. Ingredient. All in one. I kept telling Krista (from Harmony Apotheca, now Etesian Plantaceutical™ Skin Care) that it was as if she had read my mind without ever meeting me.
http://www.etsy.com/listing/99942639/sale-41-marshmallow-and-manuka-soothing
http://www.etsy.com/listing/84293185/2in1-manuka-honey-amazonian-body-butter
These are both excellent as anti-inflammatory salves for my joints and muscles and nerve pains and such. The cream smells very fresh, fruity, and floral, extremely clean and invigorating. The butter smells incredibly herbal, like strong sage and deep woods and young trees and a forest after rain.
I have been using these in my beauty routine, day and night, for over two weeks. My skin looks amazing. I am finally, after all these years, starting to feel truly satisfied. My body dysmorphic disorder, which as you know is focused on my skin, is actually slowly starting to back down. I didn't think that could happen.

Also, the most recent photos of my face made up. I like them.


"Snow White Red Riding Hood Dragon Princess Warrior"

harmonycolor1

harmonycolor2

Color Cosmetics - adding war paint and beauty masks since the beginning of existence.

Eyes: Urban Decay Eyeshadow in Mushroom, Hijack, Flash. It Cosmetics Hello Lashes Mascara; Envyderm Growth Volume Mascara
Lips: Buxom Full Bodied Lipstick in Provocateur; Lavera Beautiful Lipstick in Deep Red.
Face: 100 Percent Pure Healthy Skin Full Foundation in Creme; Urban Decay Naked Skin Foundation in Shade 2.0.

Moisturizers: Harmony Apotheca 4:1 Marshmallow and Manuka Eczema Relief Cream with Amazonian Butters.
Earth's Own Bath N Body Divine Youth Creme with Coffee Fruit.
Walk In Beauty Sun Protection Lotion with Superfruits.
brightrosefox: (Default)
So, as my Facebook friends have learned, I am dealing with a literal "nervous loss of appetite" - literal in that my biochemistry and brain chemistry is so fucked up that my hormones and neurotransmitters don't remember what actual hunger and appetite feel like (hunger and appetite are not the same, also).

See, when I had anorexia nervosa as a disease, it was always, "I don't want to eat"- and "I don't want to be fat" was an afterthought. The same thing is happening. Now the afterthought is "Well, I wouldn't mind losing ten pounds, it couldn't hurt, right?" And oh, dear ones, that is not a good thing.

So, the goal now is to teach my brain and my body to accept solid foods in the mornings, without my brain screaming about how weird it feels and without my stomach wanting to make it go away. And here is the thing: I have not lost much weight. According to my special scale, I lost maybe two to three pounds and my body fat percentage dipped a couple of numbers. Not a big deal, right? Right? Ha ha, silly, nope.
My doctors have been informed. They have been guiding me, nutritionally. I have several friends who are actively studying nutritional science and they have been guiding me.
If I can eat only half the sandwich, I will eat only half the sandwich, and I will save the other half for a couple of hours later. In the mornings, instead of taking my medications with coffee with cream and milk, I will actively make cereal, oatmeal, a nut butter/fruit preserve sandwich, eat as much as I can, and then take my pills. Yogurt is not really considered solid food, although my brain totally thinks it is. My body adores dairy and doesn't give a fuck what anyone thinks. Cheese, whole milk, full fat yogurt, bring it on. Also fruit. My fruit cravings have been wild. Now, I've been told to watch out for sugar, because "it is possible that all those cravings are for the sugar in the foods and not the actual foods" - on which I quickly called bullshit. My sweet tooth hasn't been very active. Certain fruits and naturally sugary foods taste much too sweet. I can barely handle ice cream these days, filling as it is - although frozen yogurt with fruit is tolerable. Of course, there is a chance they are right - everything is possible, probable, and plausible. But at this point, I just need to eat something. And if there is a slice of cheesecake available, I will take a few bites just to start the whole "hey, time to wake up the digestive process" thing.

So, I welcome anecdotes and experiences and even suggestions. But I don't wanna be policed, if you know what I mean. Like if a morbidly obese celebrity or a very very skinny celebrity gets targeted by a gossip community and everyone says, "Well, I'm just *concerned about her health*" and then nobody produces their medical degrees or doctorates, is what I'm saying.

I love food. I am sad. I want food in my belly and I don't want my body hormones and brain chemicals getting in the way. And above all I don't wanna start thinking that I'm going to be fat, because that means The Worm will come back, and The Worm is evil and will rip open all those scars like paper.

So, I love you guys, and if you want to say anything, go for it. Just try not to be The Health Police. I mean, unless you actually have a degree in science, medicine, health, nutrition, etc. - or you are at least studying
that sort of thing. If so, by all means, instruct me! <3
brightrosefox: (Default)
Hey, look, pictures of me wearing eyeglasses!
For the first time in I think ever, I'm really happy with my eyeglasses. I had bought these slender blue frames online from 39DollarGlasses last year, but husband preferred me in wider frames that covered more field of vision, since he thought my headaches were being caused in part by eyestrain. But I found these blue glasses in a drawer, tried them out for a week, didn't get eyestrain, and decided that they were awesome and that I would be proud to wear them in public.
And I also have my Transitions glasses for sunlight and such. And there are also the purple frames I bought online from ZenniOptical which remind me of butterfly wings.

http://www.39dollarglasses.com/4051_Blue.html
http://www.zennioptical.com/410017-full-rim-metal-alloy-with-spring-hinge-same-appearance-as-frame-8100.html


Blue Pony:
blueponyglasses



Red Gold Transitions:
transitionsglasses



Purple Butterfly
purplebutterflyglasses

I have never been one to feel proud or happy to wear eyeglasses. I suppose I just needed to find the proper frames for my whole self.
brightrosefox: (Default)
Dear everyone:
I'm in the middle of okay and not okay. Just so you know. No need to worry, but since I am still in the post ictal state (after seizure), I may type randomly weird things that are randomly weirder than usual.

And now, random things that are random!

***
You know what is awesome? Brand new boots that generally cost over one hundred dollars, bought for a whopping twenty dollars each with coupons. Mainly because the Ariat Fat Baby Copper Gator Print boots are no longer being made. The Ariat Fatbaby Cognac Ostrich Print boots are insanely cheap, too. Yay, Ariat. Yay, sales and coupons!


Ariat Fatbaby Cognac Ostrich Print

***
So, I use this as toothpaste. I mean, obviously it is a shampoo and a skin cleanser, but it makes a good toothpaste as well. I embrace my weirdness quite happily.
http://livesuperfoods.com/morrocco-method-sea-essence-shampoo.html
Also, this makes an awesome tooth cleanser and face toner.
https://www.swansonvitamins.com/natures-answer-periowash-16-fl-oz-liquid

***
Aww, look, it's my wedding ring which began as my promise ring, minus the snake details!
Technically, this.
http://www.amazon.com/Triquetra-Trinity-Eternity-Sterling-Silver/dp/B00303IH3G/


***
Stupid sore throat. Stupid fibromyalgia attack. Stupid depression attack. Stupid anxiety attack. Stupid after seizure effects. Stupid me. Also I am feeling insanely insecure, and I know I have gained muscle and tone but I still want to slice out any excess fat with daggers. Such is society's cultural pressure on women and also anorexia scars and anorexia worms that push me into wanting to emaciate myself which would be a horrid hideous thing. I am a fighter. Fuck all of that. I am at war with so many things right now, and the scars are just part of it. I don't even know why I'm talking about that, it's so private. Oh well. Pain is pain. I am in pain. I am anxious and depressed and bleeding inside and I am exhausted and I am still fighting.
I shall raise my spears and scream until I am sore. Again.
I shall meditate while grasping my heart love duck figurine. Maybe I will feel better.


Migraine is still pounding. Off to shower and bed with pills now...
brightrosefox: (Default)
Let's see. I think I will just pile on things I love here.
Clothes:
New socks. New panties. Tee shirts long and short sleeves. Pillows and cushions with memory foam. Good shoe insoles.
Makeup:
Tarte Maracuja Concealer in Light.
Sephora Perfecting Concealer in Light.
Urban Decay Naked Skin Foundation in Shade 2.0.
MAC Studio Sculpt Foundation in NC15; Eyeshadow in Moon Reflection, Silver Ring.
Urban Decay Eyeshadow in Loaded, Psychedelic Sister,
Hijack, Half Baked.
Buxom Eyeliner in Sapphire, Black Jasper, Chocolate Citrine; Full Lip Gloss in Hot Mama.
Bare Minerals Eyeshadow in Frost, Glisten, Flash, Gold Medal, Showstopper, Dream Sequence; Natural Lipstick in Red Zin, Passion Fruit, Italian Ice.
Sally Hansen Moisture Twist Lip Gloss in Cherry Twist, Berry Blend.
Revlon Lip Butter in Red Velvet, Cherry Tart, Raspberry Pie; Age Defying DNA Advantage Foundation in Bare Buff.
CoverGirl Tone Rehab Foundation in Classic Ivory; Simply Ageless Concealer in Light.
It Cosmetics Concealer in Light; Mascara; Lipstick in Pretty Woman, Love Story.

I wouldn't want to look completely like a ghost, after all. And I must conceal all perceived flaws.

*This is certainly not a holiday wish list. I just need to write it down so I can remember it.
brightrosefox: (Default)

This cosmetics stuff is for those who like to know these things (and also to distract myself from the storm horrors). Seriously, I've had friends specifically ask if I could post about my makeup. It's awesome.
 
My favorite full coverage concealers are:
ItCosmetics.com Bye Bye Concealer (my shade is Light)
Tarte Maracuja Creaseless Concealer (my shade is Light)
Kat Von D Tattoo Concealer (my shade is Light 18)
Almay Smart Shade Anti Aging Concealer (the red cap; my shade is Light)
CoverGirl Simply Ageless Concealer (my shade is Light 210)
LaurenBrookeConsmetiques.com Creme Concealer or Foundation (my respective shades are Warm Light and Warm 2)
CoryCosmetics.com Cream To Powder Concealers (my shade is Light Flesh) as well as Velvet Cream Foundation (my shade is Whipped Cream).

Now, all these concealers offer intense coverage to the point that they look almost like stage or film makeup, meaning that sometimes I wonder if my own face was Photoshopped to erase every single flaw and pore. I have found larger tubes of the It Cosmetics and Tarte on Ebay, which is worth the money. I would also like to add that MAC Studio Sculpt Foundation (I'm NC 15) and Urban Decay Naked Skin Foundation (I'm Shade 2.0) are also the most full coverage foundations I have ever used.
Every single product I've mentioned has skin caring, skin smoothing, and skin beneficial ingredients, with no petroleum or mineral oil. I hate using petroleum on my face because it caused problems (although if it's in a lipstick with lots of botanical oils and butters I don't mind, since lip flesh has no pores).

Now, my favorite lipcolors:
Revlon Lip Butter Lipstick in Red Velvet and Cherry Tart
Sally Hansen Moisture Twist Lipgloss in Cherry Twist and Berry Blend
It Cosmetics Vitality Lip Flush Lipstick in Pretty Woman and Love Story
Bare Escentuals BareMinerals Natural Lipstick in Red Zin, Italian Ice, and Passion Fruit
BareEscentuals Buxom Full Bodied Lipgloss in Va Va Voom, Hot Mama, and Hey Baby
Tarte Glamazon 12-Hour Lipstick in Wild
Tarte LipSurgence Lip Tint in Lust
Aveda Nourish and Uruku Lipstick in Cherrybud and Maracuja
BeingTrue Pure Lipstick in Temptress and Chanteuse
Studio Gear Lipstick in Super Star and Pink Quartz
The Body Shop Love Gloss Lipgloss in Raspberry

Most of these lipcolors are natural or at least have botanical oils and butters. The ones from Revlon and Studio Gear also have some petroleum, but I'm okay with that. I prefer lipcolors that help hydrate, plump, nourish, and smooth my lips. I'm not even going to list the dozens of lip balms I own.

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