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Persephone, Asha, Hecate

November 2014

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Oct. 26th, 2037

Persephone, Asha, Hecate

New user name, new self

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.

Jun. 8th, 2036

Persephone, Asha, Hecate

I'm not you. You're not me. But we're people. Yay us.

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...Collapse )

Jun. 14th, 2035

Persephone, Asha, Hecate

My brain to your brain. To the universe.

...hush now; let me speak...
And sometimes there are days when all you can feel is that pain-filled urge to fly and fall, and all you can think is "If only I could make the world fly and fall with my brain; if only I could win my own game, always."
Read more...Collapse )

Nov. 22nd, 2014

Persephone, Asha, Hecate

It Is What It Is.

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.

Nov. 21st, 2014

Persephone, Asha, Hecate

I am the crippled dragon!

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...

Nov. 18th, 2014

Persephone, Asha, Hecate

Lie down, insomnia. Roll over.

Magnolia plus Magnesium plus GABA: Good for sleep. Yes.

From a supplement website:

"Q: What is Magnolia Extract?
A: Magnolia Extract is a standardized herbal extract made from the bark of the Magnolia officinalis tree. It is a traditional Chinese medicine that has been used for thousands of years. Our Magnolia products are highly concentrated for magnolia's active ingredients, and contain 90% honokiol and magnolol.

Q: What does Magnolia Extract do?
A: Promotes relaxation, supports healthy adrenal function, supports emotional well-being, and aids in digestion. The bark contains two phytochemicals, honokiol which may reduce common anxiety, and magnolol which supports emotional wellness. Together they enable one to feel better mentally and emotionally.

Q: How safe is Magnolia Extract?
A: Studies show small doses of magnolol and honokiol are safe for normal emotional support. However, large doses may cause a sedative effect and interact with alcohol, increasing its effects. Therefore, driving or operating dangerous equipment should be avoided when taking larger doses of magnolia extract. Magnolia extract has a two thousand-year-old safety record for use as a Chinese medicine, and as an effective relaxant. Use it confidently and safely … but use it responsibly, according to directions.

Q: Who should use Magnolia Extract?
A: Anyone who wants a safe, natural way to relax and reduce anxiety should consider supplementing with Magnolia Extract.
Additional Information:

Magnolia Extract is a standardized herbal extract made from the bark of the Magnolia officinalis tree. It is a traditional Chinese medicine that has been used for thousands of years. Roex Magnolia Extract is highly concentrated for magnolia's active ingredients, and contains 90% honokiol and magnolol.

Magnolia Extract promotes relaxation, supports healthy adrenal function, supports emotional well-being, and aids in digestion. The bark contains two phytochemicals, honokiol which may reduce common anxiety and magnolol which supports emotional wellness. Together they enable one to feel better mentally and emotionally.

Studies show small doses of magnolol and honokiol are safe for normal emotional support. However, large doses may cause a sedative effect and interact with alcohol, increasing its effects. Therefore, driving or operating dangerous equipment should be avoided when taking larger doses of magnolia extract.

Magnolia extract has a two thousand-year-old safety record for use as a Chinese medicine, and as an effective relaxant. Use it confidently and safely … but use it responsibly, according to directions."

Nov. 2nd, 2014

Persephone, Asha, Hecate

Crying: A Thing That Happens

http://www.autisticsspeakingday.blogspot.com/2014/11/autistic-ways-of-reacting.html?m=1
My mother has always insisted that I be more self aware. I never figured out why that was so difficult. I'm learning so much. I feel like rediscovering myself.

" Low emotional self awareness means that i can be – often have – building up to full meltdown without even knowing it. On a really low self-awareness day, I can be crying or raging over something and not even know that I’m crying or raging, let alone why. Tears will be streaming out of my eyes, and I’ll insist I’m fine, it’s just my allergies. Not because I’m lying, but because my conscious brain is genuinely unaware of how upset I am."

Nov. 1st, 2014

Persephone, Asha, Hecate

Accept me, accept it all

https://adiaryofamom.wordpress.com/2013/03/21/hate/

"In one of my favorite posts about identity-first language, Zoe at Illusion of Competence writes the following:

I was at a conference last summer at which Ari Ne’eman gave an introductory speech, and it fell to him to explain why ASAN uses identity-first language. One of the things he said, which I really liked, was “If I’m on a flight and the airline loses my luggage, I don’t arrive without my autism.”

No matter what our view of autism’s origins, I think we can agree that it isn’t an appendage that can be taken on and off at will. It travels with our kids. IN our kids. As PART of our kids. And as such, it’s simply not reasonable to expect them to understand that we loathe autism but we don’t loathe them. Or that we hate this thing that afflicts them, but they shouldn’t hate themselves. Because even if we could get them to understand the difference intellectually, we’d be hard-pressed to get them to FEEL the distinction. And after the other night (and last night again and this morning again while Katie was still coughing and Brooke was still screaming), I was convinced that if we continue to tell these kids, through our words (to them or in front of them) or our actions, that we hate / fear autism, we are teaching them to hate / fear / pity themselves for having it. People do not separate themselves from what they have / how they act / what they feel / how they experience the world. And we as a society don’t either.

For the love of God, Katie had a COUGH – something temporary and fleeting. Something that will, God willing, be gone in a matter of DAYS. A cough – not the filter through which she tastes, sees, smells, hears, touches and perceives everything in her world. Yet because Brooke hated the cough, Katie’s entire identity became conflated with it. Driving with Katie, talking about how she felt, the implications of the moment rushed over me. And the weight of those implications was almost unbearable.

If we keep FIGHTING autism, HATING autism, FEARING autism, talking about the UTTER HAVOC that autism wreaks on us and our families, we will end up with a generation of children who have learned to hate themselves – or who, at the very least, hate things about themselves upon which they have no control or that, if they can control, they do at tremendous cost to their sense of well-being and self-esteem."

Oct. 28th, 2014

Persephone, Asha, Hecate

Rock that spirit

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...

Oct. 21st, 2014

Persephone, Asha, Hecate

Notes for the Self who is disabled and attempting to understand

http://notesoncrazy.com/2014/10/turning-off/
http://emmashopebook.com/2014/10/21/mistaken-beliefs-people-have/
http://www.theguardian.com/commentisfree/2014/oct/20/disabled-lord-freud-austerity
http://adiaryofamom.wordpress.com/2014/10/21/17146/

Oct. 9th, 2014

Persephone, Asha, Hecate

MRI Image Photos

https://plus.google.com/100400881094218310019/posts/2QhbpM1cg9c

So, that's the link to all the photos they took during my MRI. You know, from here:
http://brightlotusmoon.livejournal.com/1673757.html
http://brightlotusmoon.livejournal.com/1672704.html

I'm trying to still figure out where my neurological seizures happen, since I have problems in the corpus callosum but there's no mesial damage, so. Time to research neuroscience. And then talk to my neuroscientist.

Oct. 6th, 2014

Persephone, Asha, Hecate

My father's Masonic mural

https://www.dropbox.com/sh/kortss8x9wfkdn0/AAA--sqw--nZpKp8bl2C5pa9a?dl=0

So, anyway, that's the mural painted by my father - a mason and an actual stonemason -in the Masonic temple in my hometown, Sag Harbor, NY. Since it's Dropbox and I've never used Dropbox, I wouldn't mind ideas on how to share and such aside from this.

Anyway, my dad is amazing. This is chilling, you guys.

Oct. 5th, 2014

Persephone, Asha, Hecate

Wait, it's been a year approximately? Happy, anniversary, diagnosis?

Well, shit. I should have realized. It's been over a year. And I just wrote this comment over at a friend's. I should post it here as both an anniversary reminder and as a general thing.

A lot of parents of autistic kids and adults don't know how to work with and help their children, turning to damaging methods like ABA - which I am still reading up on myself, as scary as it is. But lately some of those parents have taken up a mantra of "speak to autistic adults; listen to autistic adults." Nothing About Us Without Us, indeed.

'See, my autism is my new best friend. Really new. I don't know its favorite sub-shade of green yet. It doesn't know why I prefer cobalt blue and hate powder blue. We are circling each other, even after a whole year of being introduced despite having a whole life together. We are both really uncertain about specific TV shows for different reasons. But I don't know what my autism would say to non-autistic parents of young autistic children, and my my autism isn't sure those parents would like it and thinks I might sound like a jerk. So, I'm kind of flailing. What DO you say?'

#littleautisticthings

Sep. 30th, 2014

Persephone, Asha, Hecate

And life goes round

The replacement medical dog tag, which features the main medical conditions that essentially encompass most other syndromes - cerebral palsy and autism have so many comorbidities and associated disorders that most medics will get the idea.

medicalalertpendant


It came via a website called Sticky Jewelry. They're pretty awesome, and affordable. This came with a free cleaning chamois cloth and a free medical identification card on which to fill out vital information, like emergency contact, physician phone number, prescriptions, blood type.

The pendant I attached it to is an Etsy-bought custom-made ouroboros pentacle with an amber stone. It has a lot of power for me. Also, it's a fun stim.

Sep. 29th, 2014

Persephone, Asha, Hecate

I do love MedScape

...I do need to get an account of my own, mind you.

A friend posted this, so I'm sharing.

****

You need a (free) Medscape account to read this (you may, er, need to fudge a little about *technically* being in the healthcare profession . . . my opinion is that those of us who need to spend significant time managing our medical care are roughly equivalent to being at least *part-time* healthcare workers.) ;P

It's important to stay up-to-date on this, because medical continuing education programs don't necessarily require keeping up with specific disease criteria, and may be more general in nature -- plus, the trigger-point/tender-point exam has been around for so long, it's a matter of habit with some clinicians. You will be best-armed to manage your own care, if you walk into your appointments without assuming that your doctor is necessarily knowledgeable about the *most* recent research.

"[T]he 2010 criteria was to create diagnostic criteria that were more user-friendly for clinicians to use in practice— for example, reliance on the tender point exam, which we know may be incorrectly applied in practice and be misleading in suggesting that FM is primarily a muscle or tendon problem as opposed to being primarily a problem with sensitization and dysregulation of the CNS. The new criteria rely more on pattern recognition of the constellation of chronic widespread pain along with other characteristic features such as fatigue, sleep disturbance, cognitive dysfunction, and irritable bowel symptoms—symptoms that may occur either as an independent entity or in association with other chronic illnesses such as rheumatoid arthritis or osteoarthritis."

http://www.medscape.com/viewarticle/831471

Also, a recent study has shown that fibromyalgia patients process multiple types of sensation differently, not just pain sensations:

"Brain scans of patients with fibromyalgia showed that they processed nonpainful stimuli, such as sound and touch, differently than the brains of people without the disorder. This may explain why patients often complain of hypersensitivity to sensations in everyday life, author Marina López-Solà, PhD, from the Department of Psychology and Neuroscience at the University of Colorado, Boulder, told Medscape Medical News.

"What we wanted to know is whether in fact there was something in the brain that would account for these feelings in response to stimulation that is not painful in nature," Dr. López-Solà said. The study, published online September 15 in Arthritis & Rheumatism, used functional magnetic resonance imaging to show that patients with fibromyalgia processed visual, auditory, and tactile sensations with reduced brain activity in primary sensory processing areas, combined it with higher activity in sensory integration areas such as the insula, compared with individuals without fibromyalgia."

http://www.medscape.com/viewarticle/831831

Please feel free to quote and repost anywhere -- just please don't attach my name to it, since I don't want to lose access to *my* Medscape account. Thanks!

***

Sep. 25th, 2014

Persephone, Asha, Hecate

Humans are twatwaffles.

I want Soren Bowie to be my friend.

http://www.cracked.com/video_19092_4-types-bullying-we-are-shockingly-ok-with.html

Sep. 19th, 2014

Persephone, Asha, Hecate

Being Elsa: Pain triggers stress triggers pain triggers augh.

Because part of All The Therapy is blogging my feels. And this was short enough anyway.

'kay.

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

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

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

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

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

(Alice is from Alice in Wonderland and Elsa is from Frozen. Because of what happens to them. Etc. I actually still have not seen Frozen all the way through yet. I will, obviously, and it will be many times. But I relate desperately well to Elsa, her hidden aspects, her representing disability, autism, childhood abuse, chronic anxiety, PTSD, personal orientations, and her love for a sister beyond a potential unnecessary husband. I only have chosen sisters and I love them so hard like the stars.)

Sep. 18th, 2014

Persephone, Asha, Hecate

Words that mean things, always

http://www.autistichoya.com/p/ableist-words-and-terms-to-avoid.html

Okay, so naturally I disagree with several of these. I use Idiot, Moron, Crazy, Stupid, Lame, Gimpy, Cripple. In fact!...
Via Facebook:
BTW, FYI: When I am stressed, worried, afraid, or panicked, I turn to satire, wryness, flippant humor, self-deprecation, and dark humor to soothe myself. It's not that bad right now, but if I discuss any health issues with blatant dark flippancy toward myself, it's just a way of being okay with stuff.
I'm sure plenty of folks do this. Sometimes it's all about sanity and security! I am such a lame cripple right now. Hah.
BUT: I won't use ableist words without a warning note that I personally am not offended by a few (specifically idiot, crazy, moron, lame, gimpy, cripple - I apply them only to myself). Since they are known offensive terms, and I know this, I'll make a point to not use them outside of me, myself. However, if anyone has issues with my potential use of those listed words specifically, please let me know.

See, I think lists of ableist words tend to go too far. But everyone has their own hairline triggers and I ain't stepping on those wires. But I won't step on eggshells. I will apply trigger warnings and disclaimers because I know very well. One of my favorite insults comes from Futurama: "Asinine Morons." It feels so good on the tongue. I just like the word Asinine. Maybe Moron could be replaced with Coward, Jerk, Pissant. I don't know. I really love finding words and terms that I could use instead of words that obviously refer to disabled people in an unflattering way. The thing is, with disabled people being among the most marginalized of the marginalized groups, it will take a long time to alter the vocabulary or lessen the ugliness of the words.
I still refuse to use "retard" because it reduces a person to slowed developmental growth above all else. And really, the only time I've heard "retarded/retardation" was with plants. And there should be other words.

On to other things: My migraine, which has been slowly creeping since last night, is being gently soothed by caffeine, B-Complex, Boswellia, Magnesium, Aspirin. The Ayurvedic pills - Bacopa, Ashwagandha, Shilait, Turmeric, Boswellia, Fenugreek - have been helping slowly but surely. And the stuff I picked up while grocery shopping are helping beautifully too. Yay symptom soothing!

Sep. 17th, 2014

Persephone, Asha, Hecate

Living means...

...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.

Sep. 13th, 2014

Persephone, Asha, Hecate

Companionship, stories, scars, and power

Copied from Facebook.

1 "When you’re going through a thing like this, you tend to latch onto ANYTHING that isn’t panic inducing and repeat it over and over to avoid the things that are terrifying..."

2 One time, a long while ago, I was having a panic attack, and so I shifted my thoughts to looking for a lost plush animal to move away from the panic, and I told Facebook because I have friends here who understand, and I was told by a random acquaintance that it was unnecessary to post about having lost a toy, that nobody cared because what good would it do, and that I should post more meaningful things.
Panic attacks don't care even more, but at least they start to fade once you work through them and work past them. Internet trolls don't. Especially not those who don't care what panic attacks do to specific people and how they get treated by specific people.
*quick deep breathing*
Goodbye, trolls. I turn away from you. I will quit talking about being harrassed and move on.
Also, panic attacks suck. So I am focusing on my stuffed animal toys and my cat Callisto, who is snuggled up with me like comfort.
That is all.

3 My phone case from Diztronics is deep blue with blue and silver glitter. It's like someone spray glittered the TARDIS. My Galaxy S4 is red, so it is amusing. :-D

4 I did a chaotic organization of medical supplements, loved toys, loved books, skin care; and all the patterns I'm seeing are making me squeal and dance. And now to watch all of Futurama on Netflix, and then Uncle Grandpa, and then The Amazing World Of Gumball, and today is a Soft Clothing day because my skin is being sensory processing disordered and hypersensitive to pressure. Etc. And The Amazing Amanda will understand because she and I are like autist sisterlings.
#littleAutisticthings

5 I decided that resistance bands are better than push ups for my capabilities and issues. Grab each end of the rubber band and lift up to my chest, pull and hold for one second and do as many reps as I can. It works various upper arm muscles, shoulder muscles, chest muscles, and ab muscles if I engage them. Then my brain sorts through patterns to connect to different muscle sets and brain signals that might work best with the hemiplegia. Sometimes I color code the central nervous system activities when I can. It takes a hell of a lot of meditative concentration and it doesn't always work. But it is fun and it is soothing.
Compromise, compensation, modification, personalization. My mother always made sure I could do stuff however I had do.
#LittleCerebralPalsyThings
#LittleAutisticThings

6 "So please, just listen. I know you’re afraid, but being afraid is alright. Because didn’t anybody ever tell you? Fear is a superpower. Fear can make you faster and cleverer and stronger.
And one day you’re gonna come back to this... and on that day you’re going to be very afraid indeed. But that’s okay, because if you’re very wise and very strong, fear doesn’t have to make you cruel or cowardly. Fear can make you kind.
It doesn’t matter if there’s nothing under the bed or in the dark so long as you know it’s okay to be afraid of it.
So listen. If you listen to anything else, listen to this. You’re always gonna be afraid even if you learn to hide it. Fear is like a companion, a constant companion, always there. But that’s okay because fear can bring us together. Fear can bring you home.
I’m gonna leave you something just so you’ll always remember. Fear makes companions of us all."
- Doctor Who Season 8 Episode 4 "Listen"
-Now one of my own personal fear litanies

And also, see, as a signature, I tell stories and engage in conversations as though my Facebook friends are already with me.
It is highly frustrating for some, and I've been harassed over it by random strangered acquaintances and bored trolls because they want to know stone details in rational and logical ways that are opposite from my whimsical spontaneous blurting out wordenings, but they don't realize that I am waiting to reveal, I am preparing those stone details for later in the story and that is how I work and how I brain, because a neuroweird brain like mine isn't very straight, it is curvy and looping and wavy and look over there at the shiny. Autist? Sure. Artist? Yes. Atypical neurology? Forever.
Details are for the comments sections, in which the story continues like a deep conversation. I never plan to engage conversations, but when it happens it becomes magical and it becomes anything.
And so this monologue in an episode about facing fear and patterns of lonely and alone and companionship and need, I see stories and conversations that veer everywhere across a dozen thought processes, neural connections zooming and smashing and spiking as ideas slam into each other.
Come, friends, fall into the story with me! We can converse in the comments. But don't be harsh. Be kind. Be clever. Be an empathic friend, not a severe critic. Be companions, and we will ride these blurted engaged stories buoyed by the strength of companionship.
Spoilers.
http://www.threeifbyspace.net/2014/09/doctor-who-804-listen-quotable-quotes-points-to-ponder/

7 "Scars tell the story of our lives, inscribed upon our skin. I’d not remove mine for the world." -Failure To Fire Comic via comments section
http://ftf-comics.com/?comic=face-reveal-2
It took me so, so long to accept the scars I had as a newborn. Like... three decades. Alex has acquired scars, so I feel that I have a sort of mental dissociation with that for some reason. I still feel irritated, literally and figuratively, with my scars, since no matter what they hurt but are also stories.
Discussion to continue in comments. I'm in a weird headspace.

Sep. 11th, 2014

Persephone, Asha, Hecate

I can see my brain from here!

FYI! Got my brain CD. The neurologist couldn't find anything out of the ordinary that was not already abnormal, etc. So I went and got the CD with my MRI and brought it home, and Adam turned it into a Power Point presentation. I wish so much I knew what to really see, that I could see with a neuroscientist's eyes. I can see my butterfly's broken wings. And the thinning of the corpus callosum.

Let me see if I can copy from the paperwork...

Abnormal dilation of both lateral ventricles with an asymmetric area of dilation along the mid body of the right lateral ventricle. Waviness and distortion of the lateral ventricular margins bilaterally. Dilatation of the third ventricle. Partial absence of the septum pellucidum. Generalized thinning of the corpus callosum which appears grossly intact. These findings likely represent developmental anomalies of the brain; however, these findings could also represent the sequela of in utero ischemia and periventricular leukomalacia. There is no evidence of focal abnormality of the temporal lobes.

Ahh, science. *basking in words*

Now, however... I am still irritated about the lack of EEG response. They tell me I was born with epilepsy - and there is the physical evidence in my brain creature right there. However, I feel... I suppose silly is the word. This may not be an ordinary kind of epilepsy where electrical activity shows up on EEGs. But... but that doesn't necessarily mean anything. I guess. I just sometimes wonder, that's all.

Sep. 9th, 2014

Persephone, Asha, Hecate

Dreaming of coffee?

Sleep last night was interesting and bizarre. A lot of acquaintances - and a few friends - have claimed that insomnia must involve only being unable to fall asleep or only being unable to stay asleep. I've got a form where I can do both perfectly well, but at the price of chronic pain physically, which also transcends my dreams which really should not be allowed to happen, and neurologically, which is not only a thing but which keeps parts of me both awake and asleep. Therefore, it takes too long to reach Stage 3 NREM, and Stage 4 NREM either is cut off or doesn't happen. REM itself usually happens at a time much later in sleep. Essentially, unless I set extreme alarm clocks, I will sleep for twelve hours easily and REM will happen in those last three hours.

This time, I had slept on and off throughout the afternoon in thirty minute bursts, which probably helped me get a more normal ten hours while still being woken by pain. But this time, my dreams were deep and amazing. Since I had finally just finished reading "The Winter Long" by Seanan McGuire - now my favorite Seanan book - the concept of Faerie in a Toby Daye meets Lost Girl style story exploded, and there was even a blog announcement by Seanan that the October Daye series would become a television series. For fuck's sake, there was a character embodying both Tybalt and Dyson. And then somehow I became the protagonist, as often happens, and my husband and I struggled to release a literally faceless mermaid into the ocean before she destroyed the land. There were tentacles and it was gross. But wow, lots of powers. Many, many powers. I always get powers in dreams, usually psionic, some form of psychokinesis, normally elemental. I still recall the dreams I had as a teenager where I was pyrokinetic enough to set a tree on fire just by waving my hand at it from the window of a room.

I am especially determined to wake up after nine or ten hours to dial back whatever toll the oversleeping is taking. Then, slowly, eight hours, just to see if I can handle that "average" 7 to 8 thing that normal people talk about.
Adam somehow gets by on less than 7 per night, sometimes 4 when he's out of state working 18-hour days as an IT/AV trade show technician and manager (he loves talking about his job, and it is fascinating work, since he gets to gain secret access to some of the most powerful places in the country and listen to some extraordinary science and medical research breakthroughs during conventions; even just setting up hotel rooms full of projectors, printers, computers, and video screens means being the on site technician when powerful things happen behind closed doors. There is also fixing stupid mistakes, frozen computers, and hours and hours of human error, but more hours means more pay, and he can carry entire printers up flights of stairs).

Also, I think making myself wake up earlier than what fibromyalgia wants will keep other things stable, aside from the obvious. Since going on Zanaflex, most of my systems affected by fibromyalgia have mildly stabilized, which is amusing, since Zanaflex is just a muscle relaxer. People in various support groups kept trying to insist that it shouldn't be happening and that Zanaflex is bad for me. They are so cute when they're trying to be the arbiters of other people's realities, especially regarding brain chemistry!

I'll see my awesome husband tomorrow night, or Thursday, when he returns from another work trip up and down the Northeast.

http://science.howstuffworks.com/life/inside-the-mind/human-brain/dream6.htm
I really must try dream incubation. With everything. Dream All The Things. I've used two phone apps so far to record my sleep, and one of them quit. No, really. The other one just became boring.

Sep. 8th, 2014

Persephone, Asha, Hecate

Airports are fascinating

I should probably stop reading so many stories of airlines and the shit put up with by flight attendants.

This weekend, Adam and I flew to Atlanta for the Bar Mitvah of his niece, Jacob. Adam and his sister, Tina, were not close in their youth, and Tina was a fairly nasty young adult, spreading lies about their parents, but she's become lovely and less discriminatory. At the celebrations, she was very sweet and kind and devoted to making sure everyone is happy. Apparently, when Jacob and I began chatting about Star Trek and I recommended more science fiction, I became "the cool aunt". It'll be interesting to see how Jacob turns out in three years, at his brother Noah's Bar Mitzvah.

The plane, though. Everything was fine. It's been at least a couple of years since I last flew. No anxiety, no nerves. That three hour layover in Charlotte, NC, was fantastic. The four flights were absolutely uneventful. The Marriot room we stayed in was beautiful - Adam had checked that I was disabled during the booking, so we had a very accommodating room. During the long walks across each airport at Atlanta, Charlotte, and BWI twice over each, I was fine and alert, if not deeply fatigued bodily. Chronic pain cares for no airport walks. I sympathized with every flight attendant I saw.

Today, I mainly rested. Adam left for Boston, to return Wednesday night or Thursday. I'm always a little stunned and impressed that he does so well with travel, be it driving or flying.

Aug. 31st, 2014

Persephone, Asha, Hecate

Acronymn Confirmed. Now I can get to work.

Sooo, you know how I've been chatting with my neurologist a ton, and also with my psychologist? Neither woman has spoken to the other. But they both recently gave me the same diagnosis.
(Now, I need to stress that I am perfectly aware of the "Stop relying on so many diagnosis labels, it's just medical stuff, what does it matter, why do you care, why do you think people would care" cliche that has been poked at me by, well, many healthsplainers and people who just want me to stop talking so much about my medical history, future, and present. And yeah, I get that. But guess what, I don't care.)
The neurologist was kind of relaxed about it at first, and after I left her office I didn't really consider it. Not until that one session with the psychologist, when she looked at me with tears in her eyes.
It's just that the neurologist used one term, and the psychologist used a different term.
And I would love words from those who are there. Because fuck it, it does matter.
http://www.psyweb.com/articles/depression/chronic-stress-disorder

Aug. 29th, 2014

Persephone, Asha, Hecate

"The gauzes [electrodes] do nothing..."

From Facebook, because I am very tired:

-So, here I am in my little hotel style room at an official neurology sleep center. My tech, Peter, is sweet and funny. I even have a big shiny red button to press when I need him. It's in a pack attached to my waist. My head is wrapped in gauze. Electrodes are hooked to my skin and wires are trailing at my feet. Adam took a picture. Go see!
The bathroom has a shower with a chair!

-LOL, gauze and sexy electrodes.
The reason for all this is because my neurologist is concerned about the several seizures per month. Hence, a ten hour EEG study. I get naps and Adam brings food. And when it's all done, the doctors will see if anything significant happened. Even if I don't have any seizures, this is a good move. For SCIENCE.

-Adam is bringing me lunch. And then, more specific tests will happen. Probably another nap? Apparently, the EEG has not shown any seizure activity. I haven't even needed to push the shiny red button yet, which amuses the technician.

-All done. I need a shower and a nap. Adam will take me home and then I'll wait for the neurologist to call. I'm actually disappointed that I never generated any seizure activity. It makes me doubt my brain.

-The days when you're just too exhausted to get back up and shampoo out the electrode goo from your hair. I'm just going to take a little nap. Then I'll get that shower. Just a little nap.
(Spoilers: I slept for one hour and took a really long shower with like three shampoos and two conditioners.)

Aug. 28th, 2014

Persephone, Asha, Hecate

Adventures In Head Stuff

This afternoon saw my session of physical therapy until I see the physiatrist next month. For now, all the alignment exercises have done very well. I will do them for the rest of my life. They're not only extremely gentle but extremely soothing. I could probably use them to combat anxiety a little. This pleases me.

I've been packing my laptop bag and a toiletries bag. I'll pack a change of clothes. Ten hours with electrodes on my head will be fascinating. Note to self: bring the leopard plushie. Maybe the dolphin too.

When I spoke to the technician from the EEG unit a little bit ago, I was told to get less than my normal sleep time, which is generally nine to twelve hours. I'll aim for six to seven.
I was told to come in tired, so that my brain would be more susceptible. This actually matched the stuff my neurologist told me.

It is very interesting to note that an online fight rarely triggers my epilepsy. It turns out that if the fight comes out of nowhere and makes no sense, I become bored and stop paying attention until something of interest happens.
Maybe I should wander into some random forum filled with concern trolls who are insisting that groups of invisible people are on their sides. Those sometimes make me twitch.

But, since my main triggers are fatigue, emotional excitement bad or good, fear, and probably other similar things, I might decide to watch a scary movie and not get enough sleep and maybe go online and read about, I dunno, for example... trolls treating autistics like not-people. That's good for some rage anxiety.

I I just finished Gaiman's The Ocean At The End Of The Lane. It was surrealist and psychological enough to guarantee interesting dreams. I may bring it to the medical building to read again along with the other books.

I think the most recent seizure was at least two days ago.That might explain why I feel bored, puzzled, and amused in a lab study way about stuff going on around Facebook and comic forums and other bloggery type websites I follow (I don't even touch Twitter).

Currently, I am feeling like an alien watching humans throwing random petty tantrums for no actual reasons. I guess they weren't getting the results they wanted.

Keep on being fascinating, internet.

Aug. 27th, 2014

Persephone, Asha, Hecate

Make Notes, Always

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.

Aug. 26th, 2014

Persephone, Asha, Hecate

Painbot says: All I Know Is Pain

Some postictal stuff happened. Some preictal stuff happened. I don't recall the ictal stuff. Yesterday and the day before were fascinating blanks. My entire lower back, from muscle to nerve, screams in pain and then cries in pain. That has been the normal thing. So, normal Shrug.

I've been reading books. I've been watching the Simpsons marathon on FXX when I can. Occasionally, I've fallen asleep to it. What a lovely idea.

The extracts of mangosteen and noni have done their best to help with pain and such. I approve.

Aug. 17th, 2014

Persephone, Asha, Hecate

Also, some words shine like stars.

"...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.

Aug. 14th, 2014

Persephone, Asha, Hecate

Yay physical therapy!

Really, that's all I wanted to say. The physiatrist prescribed twice a week sessions for an hour and a half. My therapist, Michael, looks like a cousin of actor Jensen Ackles. We are doung slow gentle sets that engage all the muscles in my lower back, pelvis, and thighs.

Also, the Zanaflex has been fantastic.

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