brightrosefox: (Default)
Okay, first thing:

Bad day bad day. Brain misfires, pain everywhere, spasticity, OCD episode, distractions, hypersensitivities, gut issues. I will say, however, that probiotics and omega-3 supplements of specific kinds are actually doing good things to my brain. It's not really evident in any of my outward behavior, but I can absolutely feel something going on.
Dear neuroweird science students: Is impulse control mainly frontal lobe? I have a Thinky Thing I'm thinking about, but I need medical professionals and medical students to confirm. I know of Things that can help me personally and specifically, but I need to make sure I'll be doing it properly. Also, this means staring slackjawed at my MRI photos and calling my neurologist.

***

Unrelated, copied from Facebook.

Well, this person said what I was thinking.
https://www.facebook.com/thautcast/posts/830987393625539?fref=nf&pnref=story
My personal need for disability labels is personal. My need to be able to relate to people via stories and fiction. So many people have told me things like how they "don't see disability" (sorry, I have to laugh at that) and don't see labels... and that's cool. Really. That's fine. But that is not how I see the world and that is not how I view myself. Being able to say, "Yeah, I'm disabled, and these are the medical issues I have" is indescribably relieving, even powerful; it gives me a power to choose and know my own self in a very intense way that I honestly can't describe.
My disabilities are not really eccentricities or special powers; they are painful and they will get worse as I age - and I'm talking about the comorbid, co-occuring, associated syndromes and symptoms. Eccentricity? Gift? Er. Yaaa...aay? I mean, sometimes my seizures cause wicked euphoric hallucinations when I close my eyes? That's... fun? And I suppose having severe anxiety and ADHD-PI and OCD and SPD could be my mind working out itself and it's environmental relationship?
So, um, so far I'm not seeing eccentric quirks and gifts. But I don't see myself the way someone who thinks that way would see me. I've met disabled people who say they aren't disabled, and a part of me marvels at the cognitive dissonance, a part of me wonders if they're completely rejecting the medical model of disability, a part of me wonders what they do when symptoms and syndromes kick them around and act truly disabling. I say nothing to them because I know it's their thing. The only time I'd want to try to sway them is if they want to spread their belief that disabilities are not disabilities, because that can become harmful and dangerous to the social model. As Stella Young said, no amount of smiling at a staircase will turn it into a ramp. So, as much as someone refuses the disability label, I really need them to consider it beyond their beliefs.

I'm just saying. We all have very different ways of talking about, discussing, portraying, coding, and having disabilities. I'm just glad that right now, I am able to very very openly discuss mine the way I want without being punished for it. And so should others, particularly those who think differently than I do. That's what makes discussion.

***

Also? I find it funny that so many people are like "OMG aliens, what if aliens come here, wouldn't it be amazing, we should learn alien languages, I bet they don't even communicate like we do, so we should be open to new communicative experiences!"
And then they're all like "WTF autistic people you're so weird we don't want you weirding us up we don't like you why can't you be normal like us!"
And I'm all, "*throws hands up* WHAT DO YOU WANT FROM US, YOU JERKS!"

***

I am having A LOT of thinky thoughts on why people reject the term disability in favor of eccentricity, quirk, gift. Not just abled folk but people with mental illness like bipolar or schizophrenia. I am still determined to wrap my mind around visibly physically disabled folk, like with cerebral palsy, who say they aren't disabled. It fascinates me because that view is so so alien to me. As long as the conversation is civil if course.

***

http://thebodyisnotanapology.com/magazine/just-try/
http://webcast.ucdavis.edu/llnd/467b5ad7?channelId=0abfe11894d742c7b159a535058c09ce&channelListId&mediaId=29f030d8c24a4b718c1c2936187278b8

***

I don't do Twitter. But lots of my friends do. Fuck Autism Speaks. I'm not pushing anyone to do the #Notmssing thing. But I do believe it is vital to send Autism Speaks the crucial message that autism is not a "thieving disease to be eradicated" because IT IS OUR BRAINS. WE are autism. We are born with a different operating system that doesn't really comply with the standard. People laugh about meeting alien cultures with other ways of communication, and yet we are right here, a metaphor, and they not only turn away from us, they actively seek to erase us. So. No. Bad Autism Speaks. No. Stop it. Nobody is missing. We are right here. We are staring right at you, angry and sad. We have been here all along. We have been speaking out all along. You just haven't listened.

Also, hells no we're not ready to meet any alien cultures. Not if we keep trying to erase members of our own.



***
http://webcast.ucdavis.edu/llnd/467b5ad7?channelId=0abfe11894d742c7b159a535058c09ce&channelListId&mediaId=29f030d8c24a4b718c1c2936187278b8
(Nick Walker is awesome)
Autism as a neurocognitive variance. Indeed. It's a disability because it hinders how we interact with life all the time. But there is nothing wrong with us. It's just a rewiring of our brains before birth or at birth.
Like, with me. I was born a fetus. I was a 26-week-old fetus when I was "officially born". My developing brain didn't have time to pick and choose. It just grabbed whatever it could, crammed stuff in, got a random shiny new operating system that was able to work around all the dead white matter, and figured it was good enough because I still needed to finish growing into being a baby, you know? Like, "Fuck it, we'll deal with this brain damage later, just keep the body going, okay? Move it move it move it avoid the gaps in the dead parts, come over this way, this construction project is gonna take a few more months than planned, so we don't have time for sick days, guys. What's that OS? It looks kind of tangled. That's fine, it's shiny, build it in, hook it up, whatever. Hey! I told you guys to avoid the dead zones! Awww daaamn, somebody get a new team over there please? No workman's comp here, this is preterm, okay? Just go go go..."
And that's where I got my brain.
So, dear allistic and neuro-typical assholes who question my right to exist, who insist that kids like me are missing, stolen, lost, forever silent: Fuck off. My brain worked hard to be itself, and just because my OS isn't yours doesn't make me lesser.
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)
So, in my cerebral palsy support group on Facebook, someone posted asking about all the other conditions we all have that may and may not be related to cerebral palsy. I commented quickly in a very instinctual pattern, then realized that a part of my brain must have been saving it up in a fantastic pattern. I think this at least two dozen things.

Spastic and ataxic cerebral palsy... plus: epilepsy, autism, fibromyalgia, sciatica, asthma, hypersensitivity, sensory processing disorder, migraine disorder, anxiety, unipolar depression, chondromalacia patella, disorded spatial perception problems and depth perception problems, TMJ, lordosis, dyscalculia, OCD, ADHD-inattentive, anorexia recovery, light bladder leakage, seasonal allergies, sleep disorders, extreme myopia, chronic lumber back pain, eczema, panic attacks, generalized joint pain, generalized nerve pain.

They look like nothing but words. Words and labels. But they are identity bits. They are definition bits. I am not like people who are so adamant about not letting disabilities define them. Or take over their lives. Or whatever the latest platitude is. I know damn fucking well that chronic medical conditions are not the big thing in my life, not the main definition, not a thing I allow to control me. In fact, it is insulting to know that people assume that. However, look at that bunch of words. That bunch of words means things, to me and all my doctors and all my specialists and all my therapists and all my -path doctors. When I went in for physical therapy earlier this week, I listed every single thing because the guy asked me to, because neurology and psychiatry is interconnected with physiology in so many ways. People who are not involved with medical science or medicine in general love to assume I am lazy, that all I think about is being "sick" and that all I want to talk about is my medical health. I wish I were as telepathic and clairvoyant as they are. And also, fuck them. See, in cerebral palsy, spastic hypertonia alone can cause a disabled body to automatically, instinctively expend three to four times more energy than a regular normal able body. And see, in fibromyalgia, chronic muscle fatigue alone can cause a disabled body to automatically, instinctively expend five to six times more energy than a regular normal able body. I am terrible at math, but at least I can figure out the mechanics of physical energy output during basic everyday tasks, like walking. I could legitimately literally say that it is not my fault that I get extremely exhausted, fiercely fatigued very quickly during any task. I could say that and it would be absolute truth. But to most able-bodied folks, it would be another excuse.
I'm just writing this to tell them to fuck off. It isn't easy to "just ignore those idiots" as supportive folks like to say. Words wear you down, like storms against stone. But the more I remind myself that those detractors can fuck off, the better I feel about my life.

Aii.

Apr. 24th, 2014 01:39 am
brightrosefox: (Default)
Nnngghh. No. Nope.
*breath*
PAALSYY. *fist-shake*
*also literally*
*also thumb in palm, finger flexion wrist flexion, shoulder internal rotation contracture forearm pronation, elbow flexion, clonus... plus spastic hypertonia anyway and also fibromyalgia flare, also stabbed hips. Because fuck everything, that's why*
...*mutter*

A hot bath was mentioned. I requested the amazing secret to getting in and out of a bathtub when it hurts bad enough to scream. It seems there is no secret, just more pain and doing things anyway, because decisions. Magnesium salts, then. Magnesium oil massage, then. Yes.
AUGH. IT HURTS. CRIPPLE SMASH.
Oh, hey, the narcotics and muscle relaxants and anxiolytics are starting to do things. Heeeyy.
Still hurts, but heeyy. Walking. Look! Stairs seem possible again!
Still hurts, though. Just meh now.

Look, I keep telling them, mild counts. Children who have it grow up. Into adults who have it. Adults who are still disabled. Adults who are disintegrating as they age. And mild still counts. Just because I am not using a wheelchair doesn't m-
Oh, fuck this. I'm exhausted. I already went through it with them about the autism and the partial seizures and the OCD and the ADHD-Inattentive and the dyscalculia and the lordosis. And the pharmaceutical drugs alongside the holistic drugs. And I like talking to educate. But they don't seem to be listening well. They make me tired.
http://cerebralpalsy.org/about-cerebral-palsy/symptoms/eight-clinical-signs-of-cerebral-palsy/
*

http://unstrangemind.wordpress.com/2014/04/20/labels-are-for-soup-cans/
This is beautiful. Although, I've heard the term "identity" used in place of "label" and I think that's a cool alternative. But I, personally, will use the "label" term for myself, only. If someone else is fine with it, I'll apply it with them. If someone is anti-label, I will use whatever they use.

I've seen similar issues in gender: Some genderqueer and genderfluid people who do prefer the terms "male-bodied" and "female-bodied" often get scolded for not using "assigned male/female at birth" - but if that is the term you wish to apply to yourself, nobody should scold you for it or insist you change. If a person doesn't want to use the term "label" for themself, they shouldn't have to. But nobody should scold or insist that others stop using labels as identification.

It's like that whole "You shouldn't define yourself by your disability!" I would ask, "Why not? It is a huge part of who and what I am." Then again, I believe this may be part of a divide between those who were born disabled or acquired it so early in life that it is all they know, and those who acquired it after a life of ability/being able-bodied. For example, I take my being disabled seriously, and I have always seen it as a strong part of myself. However, because I was always told to not define myself with it, I learned to push that part down. Now I feel free to express it, now that I've been surrounded by new friends and acquaintances who feel the way I feel, which is wonderful and refreshing.
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)
My darling Cara Liebowitz wrote a lovely post that I had to share:
*
"I was going to bed, I swear, but The Brooke Ellison Story is on TV. Gotta say, as cheesy and inspo-porny as it is, I love it. And on some level, I AM inspired by Brooke Ellison, mostly by her sheer determination and drive to not only succeed, but excel, not only in the face of such a life changing injury, but in the face of everyone who told her she couldn't do anything.

I don't know, I feel like maybe its different for someone with an acquired disability. For us congenital folks or those who acquired their disabilities very early on, we just go along living life the way we know how. We've never known any other way. But for folks with an acquired impairment later in life, especially one as severe as Brooke Ellison's, it requires such a radical restructuring of your life and worldviews. I am inspired by those who push through and come out the other side. I'm not so sure that's wrong.

Thoughts?"
*

I shared this because it is exactly how I feel regarding being a congenital and seeing an acquired do something dubbed "So Inspirational TM!". In the disabled community, most of us have a very strong opposition to "inspiration porn" - (the most well-known example, perhaps, being that Scott Hamilton quote and poster of Hamilton and a child both with those expensive prosthetic legs, saying 'The only disability in life is a bad" attitude" and any photo of someone in a wheelchair or crutches with a quote of "If they can do it so can you" or "What's your excuse" Fuck I hate those phrases so fucking much fuck fucking fuck - But every so often something comes along that falls into a category) that is only mildly inspo-porny and actually uplifting, even though nothing inspirational actually happens that we can see.
Like the quoted story, about a woman who becomes paralyzed and gets into a top-rate university after overcoming many challenges. Now, to people like me and Cara, with our cerebral palsy, it's like, So? That's it? What else happened? What made her so incredibly inspirational that it required a sappy movie? Why isn't there a movie about my life? I was born three months early in the late 1970s, nobody really cared about my cerebral palsy because it was mild, nobody thought I was autistic because it was the 1980s when autism was barely being looked into, I in fact had no idea of any of my invisible illnesses until I was in my late 20s... You get the idea.
Now, I have extreme respect for anyone who must go through a radical reconstruction of their identity when something like an acquired disability happens, because fucking fuck that is shattering and destructive and requires a particular rearranging of so many parts of their lives and their thinking.
There are some acquired folk who get snotty about it and either insist that everyone must "fight for a cure!" or throw themselves a public pity party and beg everyone to "find a cure!" which I can't really sympathize with.
Then again, I'm the type of cripple who embraces my cripplehood... because I have never known anything else. That may, in fact, make me seem snotty, snobby, snooty, etc.
But having a disability that permanently impairs daily life, whether congenital, acquired in very early childhood, or acquired later than childhood, changes your mindset, outlook, and indeed your soul, in ways that nobody can predict. And sometimes, you literally have to just roll with it. Limp with it. You know.
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)
BTW, I'm officially on MediCare Part B (retroactive as of November) and earlier my Part C Aetna Medicare ID Card arrived, which won't be active until January 2014. It is all good. It will still save over a hundred dollars a month between all insurance and drug coverage. All my doctors are covered, all my drugs will be cheaper, and I have carefully read, re-read, and examined all the paperwork with a magnifying glass (no, really). So December's SSDI check will be less two months' insurance payments, and then January's check will also be less the Part C payment, but it is all good, because it is still cheaper than what I am paying under MHIP Carefirst in general. I feel... well, I don't know if "lucky" is the best word. But it is not as bad as it could have been. I mean, I also ride Metro and local bus transit for free thanks to being disabled and a member of Metro Access paratransit system.

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

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

Any fellow disabled folk and people who understand want to chime in? Am I making enough sense here? I feel like I am.
brightrosefox: (Default)
This has been running around my head for a few weeks and I've been wanting to get it just right, so other people with disabilities and chronic illnesses can know that they're not alone and that if they're afraid, we can be afraid together.


To quote a friend:

"I’m not very functional. If you see me out and about, I’m either doing well, or I’m going to pay dearly for it later. Probably both."

What this means is that on the surface I might appear perfectly fine and normal in every aspect almost all the time. What this means is that as time goes on, I'm going to be worn down, exhausted, and unable to properly, correctly finish all the things I was doing well.

What this means is that if I have been able to recite entire poems, paragraphs, television dialogue, and instruction lists, I will be unable to do so when I go into a fog. I have been accused several times of lying about my memory disintegration, because if I can remember specific things constantly it must mean I have a perfect memory for everything. Here is the thing about the human brain and memory: Memory is insane. It is fickle. It lies all the time. It writes fanfiction of your life. Just because you can quote everything said by a character in a television show does not mean you have a good memory. It just means that when your brain is in a good place, you can quote everything said by a character in a television show - although these days I cheat by looking it up on Google because I actually can't recall everything. It just looks like I can. That's the trick. I seem so normal.
The point is, when someone is diagnosed with brain disorders such as memory disintegration, it means that it is happening now. Everything is happening now, has been happening for years, and will happen until death.

I have been accused several times of lying about my level of physical disability, because if I can walk and run without a cane for a few hours it must mean I don't actually need the cane or any sort of assistance. I have been accused several times of deliberately wanting my symptoms to get worse, of living inside my disorders so that I don't have to face reality, which aggravates and irritates me, since it is the exact opposite of what I actually do - reality is happening no matter what I believe, and my reality is that I am permanently disabled and I am not getting better. The thing about cerebral palsy is that patients as young as twenty-five will begin to feel physically aged due to wear and tear on their muscles, joints, bones, and nerves. This is called Post Impairment Syndrome.To quote: Post impairment syndrome is a combination of symptoms that affect adults with cerebral palsy. According to the National Institute of Neurological Disorders and Stroke, this combination includes fatigue, pain, arthritis and weakness that is often a part of daily life. This symptom is due to the muscle abnormalities and bony changes that happen as you age with cerebral palsy. You can use three to five times more energy each day than an able-bodied person just to complete your daily living activities. This extra expenditure of energy combined with the spasticity and extra wear on the joints is a hallmark symptom of adults who suffer from cerebral palsy.

What this means is that when I say that I feel sixty at age thirty, I really mean it. I am not exaggerating or subconsciously causing it. What this means is that no amount of positive magical thinking and no amount of disbelieving my conditions will make me better; I might feel better for a while after psychically insisting that I don't hurt too badly, but eventually that will stop working and the symptoms will strike even harder, especially if I have been highly active from my positive magical thinking and my belief that I was not in pain. What this means is that I can decide my symptoms are gone and my bodily systems will just laugh; for someone like me, there is no power to make myself not have symptoms. What this means is that my problems are not temporary inconveniences that I can massage, medicate, meditate, and wish away... when I explain that I feel decades older, I really mean it, and I cannot slowly heal myself just by forcing myself to feel better.

Having a permanent physical disability means that I cannot just recover easily. Having a chronic pain disorder means that I cannot just force pain to disappear. What this means is that no matter what, I will be living alongside my medical issues.What this means is that I am never the same from one minute to the next.

What this means is that I really need to quit talking about my health conditions with people who don't want to know. I make too many assumptions when acquaintances and random people ask about my conditions. I have to remind myself that they don't want to hear about it. I have to remind myself that people will start thinking that I do want to live inside my medical conditions if I talk about them in so much detail. I have to remind myself to simply say things like, "I am reasonable" and "I'm disabled with cerebral palsy" and to expand only if asked. When I get scolded, snapped at, accused, and told that nobody wants to know about my medical issues, I often don't understand what is really happening. I need to remind myself that social interaction means holding back. And this is why most social interaction makes me want to curl up and hug a book, because books don't scold me for trying to talk about myself. Also, cats. Cats just want me to pet them.

****
Long quote, which I am quoting because many people I have met over the past few months literally do not believe that my health is declining on its own, and they literally believe that I could just make myself feel better with magical thinking, ie positive thinking, law of attraction. This is also why I've joined support groups. Being told "You're making your disability worse on your own" is starting to chip away at my optimism. I'm making this public so those new acquaintances can read and come to their own conclusions.

All Americans are living longer than people did years ago, and people who have cerebral palsy (CP) are no exception. For people with disabilities, however, living to an old age is a new phenomenon. We are just now learning what it means to grow older with a disability.

Although much of the information we are gathering on the topic is discouraging, there are strategies to make aging with a disability a more successful experience. “I have seen many advances in diagnoses and treatments since I was young,” said Bonnie Witt, an adult who has cerebral palsy. “People with disabilities are living longer, more productive lives. Doctors who treat adults with disabilities are navigating uncharted territory. This is a fairly new area of medicine, so—in a small way—we are pioneers.”

Symptoms of Aging Appear Earlier

People without disabilities reach the peak of their physical function between ages 18 and 25. After that, their abilities decline about 1 percent per year. At age 70, therefore, people without disabilities are likely to have about 50 percent of their top lung function, 50 percent of their peak kidney function and so on.

Even before their abilities begin to decline, however, people who have disabilities typically don’t reach the same highest points of physical function that people without disabilities do. And when the decline begins, it might be steeper in people who have disabilities. Author and Professor Bryan Kemp reported that people with disabilities show a decline of 1.5 to 5 percent per year after reaching their highest level of physical function.

In addition, people with disabilities experience aging-related changes years earlier than their non-disabled peers do. Although study results vary, aging-related changes generally occur 20 to 30 years after the onset of a disability. For people who have CP, such changes can occur in the 20s, 30s or 40s.

Pain Is Common

Pain is the most common initial problem for adults with CP. Studies show that most of the older adults who have CP report daily pain. One-third report constant pain.

The hip, knee, back and neck are the most common sites of pain. Medication is the most common treatment for pain. Studies show that 92 percent of people with CP report that exercise helps their pain symptoms, but only 49 percent report that they exercise even infrequently. People with disabilities use other methods of pain treatment, such as biofeedback or counseling, less frequently than people who don’t have disabilities do.

People with CP who walk have the most problems with pain, because their gait and movement patterns cause abnormal wear and tear on their bodies. That leads to arthritis. Twenty-five percent of people with CP who walk as children lose that ability as teens or adults. Others stop ambulating in their 40s because of pain. For all people with CP who continue to walk, distance is compromised—in other words, they can’t walk as far as they used to.

Additional Issues

People who are in pain typically experience more fatigue than other people do, so they tend to do less and rest more. When people are less active, they lose strength and endurance. Less strength means less ability to perform necessary or enjoyable activities, and it results in a decreased ability to care for oneself. That, in turn, can lead to depression, a need to ask more from family members or a need to hire more assistance. The effect on relationships and the corresponding financial consequences are obvious.

Falls are very common in adults with CP. Reports show that 40 percent of adults with CP fall at least once each month, and 75 percent fall every two months. In fact, falling is so common that most people do not even think of reporting the falls to their doctors.

Because the risk of breaking a bone increases with age, it’s important to improve strength and to plan movements, as much as possible, to reduce the incidence of falls. Other problems that occur in people who are aging with CP include increased bowel and bladder problems and more joint contractures.
***
brightrosefox: (Default)
At this point in my life, I've started shrugging it off and doing everything I can to be everything I can, if that makes sense. I can't deny any of this. I can't wish it away with whatever that magical positive thinking is supposed to do... something about asking the universe to help out? Something about deciding to change overnight and then magically changing just with determination and willpower? I don't know. I think someone wrote a book about it.
However, I'm not going to just fall down and let it take over. That's pointless. I don't plan on sitting back and hurting. I'm going to plan on standing up, running around, and hurting because hurting will happen anyway. I have life to live and things to do. In fact, some of the medicine I've been taking has been helping me remember stuff I keep forgetting, sometimes. Good times, if I can remember them. I need to keep writing everything down. I'm not even worried, upset, or frightened. I was born this way. I can't make it go away, but I can make it better one step at a time. Especially with qi gong. Screw yoga, qi gong is awesome for me.

Quoting:
Post-impairment syndrome is a combination of symptoms that affect adults with cerebral palsy. According to the National Institute of Neurological Disorders and Stroke, this combination includes fatigue, pain, arthritis and weakness that is often a part of daily life. This symptom is due to the muscle abnormalities and bony changes that happen as you age with cerebral palsy. You can use three to five times more energy each day than an able-bodied person just to complete your daily living activities. This extra expenditure of energy combined with the spasticity and extra wear on the joints is a hallmark symptom of adults who suffer from cerebral palsy.

Links!
http://www.nhs.uk/Conditions/Cerebral-palsy/Pages/Complications.aspx
http://www.ninds.nih.gov/disorders/cerebral_palsy/detail_cerebral_palsy.htm
http://www.cpirf.org/stories/465
http://www.disabled-world.com/artman/publish/health-challenges.shtml
http://www.accesspress.org/2009/01/growing-older-with-cerebral-palsy/
http://www.caregiverslibrary.org/caregivers-resources/grp-diseases/hsgrp-cerebral-palsy/cerebral-palsy-and-aging-article.aspx
http://www.cerebralpalsytherapy.net/cerebral-palsy-and-fatigue.html

I already know a lot of this stuff... but so many people don't. And that's where the misinformation happens. The denial, the scolding, the disbelief, the insistence that people with cerebral palsy can concentrate all the pain away, the accusations that people with cerebral palsy deliberate seek to be crippled and debilitated. No matter how well a person thinks they know you, they don't have your condition. And that's where it gets tricky. Because they believe that you can overcome the whole thing. And that is where education and information come in.
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)
You know it is a bad day when...

A Cerebral Palsy induced fall against carpeted stairs leads to a Complex Partial Seizure which leads to a Panic Attack with wild animal sobbing so intense your partner comes up and worries to death over you and carefully leads you to a couch and gives you water and holds you.

"It's just stairs," you tell yourself over and over. "You can maneuver them. It's just stairs." And at the top, exhausted by victory, you lay on the floor, weak as a new kitten, heart and head pounding to near bursting, crying until it sounds like laughing. And maybe all you can do in that horrific posictal state is laugh. On the inside. Because Epilepsy is a monster and has no qualms about gaining allies.
Now it is time for Fibromyalgia to have its turn. Burn body burn.

I am so tired. I have no more synonyms for exhausted, fatigued, beaten, weakened. I am done.
But I will never stop. If I cannot be myself I will be a dragon.

For those who know my Healthy Multiplicity: indeed, Alicia and Amara were like drill sergeants in my mind. They were the only things that kept me climbing those mountainous stairs. I love my human coping mechanisms.
Typing doesn't make me tired ever. And this must be written.



So... *cough*
I am okay. But I am not okay at all. So many painful things are inside my brain and my body.
It is okay to talk about that, right? To be not okay? To try to pretend to be okay?
See, that is why I love online friendships. Because if I cannot speak without bursting into stuttering wild sobbing, I can type slowly and people will understand. Right? Oh, my everything hurts.
I could say I have a muscle pain, or a joint pain, or a migraine... but I have everything pain everywhere. And I don't know how to explain it without it coming across as "My pain is worse than yours!" and I don't want to do that. Because all pain is horrible. My pain is no worse than yours. Pain is pain is pain.
I don't know what to say. My brain is so everywhere. I feel so split open and raw and drifting. I think some of the things keeping me together are my fictional characters, who still demand their stories.
I want to sob and scream and howl until I am so raw that I cannot speak. Is that okay? I can do that, right? Nobody will bitch at me for complaining, right? I just don't know. I don't know what to do. I don't know how to feel. Fear is something that feels flat but understandable. Like am emotion I am aware of but unable to truly experience in a deep true way. Like crying. It is a thing that is happening. I just feel confused. Why do I feel?
You know?

Oh, yes. The seizure. Oh, Alicia. She appeared to me so quickly, so fiercely, I had no choice but to grab her outstretched hand and run with her. She yelled, "Come with me now! You need to get through the looking glass! There is no time! Amara is waiting! Serena is waiting! Go, go, go!" and she almost shoved me through the portal, and all I remember is Amara catching me in her arms... Amara with her truly calico hair and her stormy eyes of deep purple and darkest blue and pure gold, her short slim muscled hourglass body that held me in an iron grip, my mouth against her olive-colored neck, and our tumble to a cavern floor that was lit with sunlight and moonlight, so I could see her properly, how she was only a few inches taller than me, her mouth pouty and full, her oval face the dream of every American woman in a plastic surgeon's office, her straight teeth bared in strain. She got to her feet gracefully and looked down at me and said in the voice of temple bells, "Rest now. Serena will be here soon. I've never fully introduced myself, but that can wait. We have so much time."
I shook my head. "Alicia said there was no time--"
Amara smiled and entranced me. "Only in her dimension. Here, there is every time. I am everlasting, after all. I love and guard your entire mind and brain, remember? I work with my sister, Amber, who encases everything in your varied forms of spirit and soul and energy and power. Alicia and Serena are limited. Amber and I are unlimited. We shall be with you until the end of everything. You hurt badly. I sense it. Serena will be here in a moment. I will stay with you."
I stared at her. "I've never known you until now. I love you."
"Yes. You were meant to. I am the culmination of your neurology, your neurochemistry, your biochemistry, the stuff in your head that help make you the things that are you. A Self. A Mind. A Brain. I change as you need to change. I will always be here."
Amara my immortal began to slowly fade, and Serena came running. She gathered me in her arms and murmured soothing words, and suddenly I felt as calm and as safe as I ever could.
And then I awoke, and I was a person climbing the stairs.
And I climbed the stairs, sobbing and forcing myself, and at the top of the stairs I lay crying, and then my husband found me and helped me to my work couch and gave me water, and I couldn't talk about my girls, but it was all right. I would be all right.
brightrosefox: (Default)
I often "cross post" between here and Facebook, since sometimes stuff I say there, in increments, can be transferred here as stories and ruminations.

Lately, I've been getting genuinely angry at many Facebook friends and acquaintances - and it takes a fucking lot to make me genuinely angry. Multiple people on my Feed have been reading and watching the internet and talk show versions of medical conspiracy theories and tabloids - technincally slightly true, definitely not completely true. "So, these doctors on this daytime talk show or YouTube segment or extremely biased blog are saying that almost every serious health problem in America can be linked to pharmaceutical drugs or the side effects from those drugs. So, have fun taking those deadly dangerous pills! I'm going to be all smug and condescending because I don't take any pills at all even though I probably should for medical conditions I refuse to talk about."

Have you ever had a triggering of your rage gag reflex? Not quite retching, but a mental version of "I am about to explode rage all over this!" because something has truly, severely pissed you off. That has been me over the last couple of days. Some very very intelligent friends have been reposting these ridiculous claims, and my response is usually double facepalm and "For fuck's sake, take everything you read and hear on these blogs and talk shows with grains of salt, please, please, please." Like... okay, I like watching the Doctor Oz show every now and then. Quite often, he is extremely insightful, helpful, and correct. But he is also trying to get high ratings. Same for that talk show The Doctors. Who also used to be Oprah's friends. A panel of four core doctors from different specialties talking about medical breakthroughs, things that are good and bad for you, et cetera. Apparently, a recent episode featured the ER physician claiming that pharmaceutical drug side effects were causing most of the country's medical problems. At which point I facepalmed, went online to trusted websites, and proved him essentially wrong with a few keystrokes. It turns out that after the episode aired, multiple physicians and specialists who were not mere ER doctors called bullshit and blasted the episode and the hosts for being irresponsible. Again, ratings ratings ratings. But so many Facebook friends are falling for it that I wound up "hiding" their posts because I was getting seriously insulted. Funny that this happened after I made a status post about how grateful I was for the pharmaceutical drugs I've been taking to help mitigate my conditions.

Look, pharmaceutical drugs are not the Best Things Ever. They have serious side effects for many people. They alter the body and brain in ways that can be more damaging than the conditions they are treating. BUT. For millions of people, they are lifesaving. They have treated the symptoms of thousands of crippling diseases successfully. For many patients, they are the only options, because holistic medicines, supplements, and alternative therapies haven't worked for those patients (and of course, holistic medicine is either The Best Only Medicine Ever or Quackery Placebo Bullshit). So, to say something like "I heard from a TV doctor that pharmaceutical drugs are the main cause of most medical problems" and to follow it up with a slap in the face like "Good luck taking your pills, guys!" is... a slap in the face. Especially if that doctor was being paid to exaggerate findings or to promote some sort of media, to gain readers or viewers. And especially if the people repeating these claims hadn't seen a doctor themselves in years due to lack of opportunity, fear, hatred, or simple mistrust of doctors - which makes me laugh my ass off. "I don't trust doctors, doctors have never made me feel better, but this one doctor said this thing and I believe it completely and so should you!" It is one thing to drink the Kool-Aid. It is another thing to splash the plastic cup of Kool-Aid in my face.

You know, this is why doctors practice medicine. Practice, not master. It is a practice. Many many times, they get things wrong. Doctors are not perfect. Nobody is perfect. Not even you. So, dear Facebook people, please double check your facts, get second opinions, and actually think about it before you quote what sounds like medical conspiracy theories.

In the meantime, I'm going to sit back, smile, watch silly cat videos, and take my evil pharmaceuticals and my quack herbal supplements that are all maliciously working wonderfully to effectively relieve the worst symptoms of my twenty separate medical conditions. Damn them! *nods*

Also, in May I have my first appointment with a licensed craniosacral therapist. Having had craniosacral therapy twice, with extraordinary results, I am eagerly anticipating this.
brightrosefox: (Default)
https://www.change.org/petitions/chairman-murphy-and-ranking-member-degette-stop-threatening-the-hipaa-rights-of-people-with-psychiatric-disabilities
To quote a dear friend:
"I am a fully-functioning human being, mentally ill people pose NO greater threat to society than non-mentally-ill people, and we are entitled to exactly the same protections as every other person. Do not discuss these issues without allowing mentally ill people to educate you. Do not discuss these issues until and unless you are aware that mentally ill people are more likely to be the VICTIMS of violence than the perpetrators. Inform yourselves and actually talk to the people involved. Don't bring your own preconceived ideas to the table, call them fact, and suggest policy based on them. That's inhumane AND unlawful."

And I would like to add:
There are very different types of crazy. What I call Hollywood Crazy or Hollywood Mental Illness is usually the kind that is an exaggerated version of a disorder that is seen as a danger to oneself and others. There are people out there so terrified of this that even if they are mentally ill, they will refuse to say anything because ignorant family members might see them as Hollywood Crazy (see: "I am not crazy! I have never been crazy! Don't call me crazy!" often intoned with an air of fear, upset, prejudice.) And in those minds, Hollywood Crazy might mean commitment to a ward or facility, which is often seen as a terrible thing, not a helpful healing thing. We seriously need to change how we view mental illness and mental disability. There are so many people living with a form of mental illness who absolutely refuse any sort of treatment purely out of fear of ridicule, shunning, disconnection from family, even forced unnecessary commitment to hospitals. We need to show them that the stigma is human, driven by fear that breeds hate, and that there is no shame or fear in getting some sort of treatment.

***

Dear pharmaceutical drugs: I know people hate you and think you are poison, but I just wanted to tell you that I greatly appreciate your role in saving my life.
I will always balance you with holistic remedies, allopathic medicine, and whole body treatments. But I will always be grateful for the way you have helped me feel better, and even normal, under certain standards. I am one of those people who rarely experience the various side effects listed - which really, are simply issues reported by test patients during trials, which may or may not actually affect anyone. It took me years to realize that. After all, many, many pharmaceutical drugs were initially derived and synthesized from plants, foods, and botanicals. I am not sure about recent years, but chemistry is chemistry.
I do not participate in the stigma and hate toward you. Of course, I am only speaking for myself and my personal experiences. I know so many people who really have been poisoned and "screwed up" because their chemistry reacted very badly to certain medicines, causing extreme side effects that led to even worse conditions. I cannot speak for them. But I can speak for me. And all I can do is be grateful.
One day, I will taper down until I need only very small dosages of the drugs I am taking. That may be years from now. I will still need to take certain drugs for the rest of my life However, for the time being, I am perfectly fine with the pills I take. I cannot say that for anyone else - I am not anyone else.
I am always sad when I learn that so many other patients cannot handle certain medications or become worse due to negative side effects - that is horrific.
Yet as long as no one tries to convince me personally that my life would be better if I quit all my essential medications, I will nod and agree that we take too many prescriptions as a whole, and that negative side effects can be absolutely terrifying and can lead to worse problems. I wish there were more patients like me, who are are able to handle drugs without intense side effects.
And now I shall take the supplements that I take daily, to help balance the pharmaceuticals. Because the supplements work for me. And that is a completely separate debate for another post.

Oh, hell, might as well do that post now.
Depending on who you talk to, supplements and holistic medicine and alternative remedies are either the best thing and the only thing, or absolute bullshit and placebos. And then there are those who regard supplements as exactly that - supplemental. Alternative. Balancing. No big deal.
I grew up on vitamins and supplements, only being given pharmaceuticals when necessary. Now that I need to take over half a dozen pharmaceutical pills daily, I balance them as best I can with vitamins and supplements.
There are plenty of sick patients who are physically unable to take supplements and alternative treatments, as their bodies and brains completely reject or don't respond at all to said medicines. Which is why I bristle whenever someone insists that pharmaceuticals are all poison and only supplements and natural medicines are the way to treat illness. Nobody is the same. Everybody is different. What works for me may not work for you. People don't seem to understand this. People may never understand this.

And here, I submit a full list of every single diagnosis ever made in my life, and here I submit a full list of pharmaceutical medications and supplemental medicines, stored in both my Facebook Notes section and a document in Word.

Read more... )

And now, time for the daily supplements that I take daily because they work for me.

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