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)
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)
So! I did a thing a while back. I didn't tell anyone. Anyone at all. And now it is time to come clean, because it's been long enough that I think I can finally shoot down the pushers.

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

The results were...

Wait for it...

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

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

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

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

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

Ahh, humanity. Fun!
brightrosefox: (Default)
Well, when people ask me how I manage being married to someone whose work involves constant traveling around the country and occasionally to other countries for many days at a time, I apply a quote from Captain Awkward:

"...day to day during their separations the most they ever had to go on was “If we both survive this, I promise to try really hard to still love you” because that’s all anyone has ever had to go on."

This quote was applied to her grandparents while her grandfather was in the military and this far more intense than working across the country for two weeks. However, it applies to many, many things. It applies to couples of any status going through, well, anything.

Actually, my ultimate favorite was always from "The Princess Bride" (both book and film). You know, the scene in which Westley wanted to first make money across the sea so he could marry Buttercup properly: "Hear this now: I will always come for you." And much later, upon meeting with Buttercup after his supposed death and her arranged marriage: "Death cannot stop true love. What it can do is delay it for a while."

Years ago, my husband wrote, in soap, on the bedroom mirror "I will always come for you" and drew a long-stemmed rose alongside. It will be there until the mirror goes away.

That's the core. That's the cornerstone. "I will always come for you." He will always come back to me. When he was working outside the country for two straight weeks, when it was too expensive to call, he would arrange video chats via cell phone, preceded by a quick text; luckily we were in the same time zone this time. Even if we can't communicate for a while, we know we will be reunited soon enough.

The result is good money for bills and food and necessities and small luxuries, and his travel is worth that. Since I am disabled and literally, officially unable to work by government standards, earning a bit of Social Security Disability Insurance monthly, it is up to him to make the bulk of the payments - and we are unbelievably lucky and grateful to have a tiny mortgage and small bills and are surrounded by nearly a dozen varied food markets, shops, and stores that I, unable to drive, can access by public transport. We make sure to stock up on things I and our three cats will need for however long he will be out of the state. I am lucky that my disabilities don't hinder me from getting around, doing some light shopping, cleaning the house poorly, etc. I'm very introverted and very good at being my own company while he's gone.

We are aware of the privileges we have and don't have with this life, and that is important. It's very easy to say, "It could be worse..." but it's an overused phrase for me. We have our problems and issues and near-misses (traveling as an IT/AV technician sometimes means getting injured, getting damaged, or just missing a fatal injury; arguments happen all the time and are quickly resolved because we hate fighting; no doctor appointments set until we know when he has time, etc). We do everything every other couple does, just often at a distance.

And you know, we started out at the very end of the 20th century. All we had were house phones, simple emails, simple instant messaging. We didn't get cell phones until we were already living together. Social media was barely more than blog posts and message forums. We've been doing this for so long that we're experts and pros. And yet... I still really don't know what to tell people. Because I can only explain what works for the two of us, which might not work for others.

I will admit that I do still roll my eyes when someone cries because their partner will be away for "a day or two" - particularly if it seems dramatic. I absolutely bite my tongue and resist that urge to play the Suffering Olympics, because I'm a jerk like everyone else and I'll be judgmental. But I will sympathize and empathize deeply enough to care about their concerns. Because you don't know what will happen.

And so, to the people I forgot to respond to in the first place, here is your answer: I still don't know how I make this work. It's a long distance marriage born out of a long distance relationship. It works because we were friends and will always be friends. It works because I am amenable and casual and I like being alone and he likes traveling and his work and adventuring, and we love each other and we like each other so much that we just... know. You just know. You know? I guess?

I'm sorry that got so vague and incoherent near the end, but I cannot explain it much better. It's a thing you have to work out and work at. You have to know, feel, and understand yourself and your partner; you have to completely commit to knowing that plans will change constantly and you will be sleeping alone for a week. You have to want this life. I think a huge part of it might be never taking the relationship for granted. Not the love, not the like, not the good days, not the bad days. And I mean, really meaning it. Also, saying "I love you" as much as possible always helps.
brightrosefox: (Default)
My modified Disablility Compensated Qi Gong exercises always help, mentally and spiritually and psychologically and physiologically. Like yoga, except Fake Yoga Cripple Style that is not actually yoga. (FYCS. FIX. Ha ha ha...) (Or hey, Fake Yoga Cripple Style Modified Exercise. FYCSME = FIX ME. Ha ha. Wow. Dude.)

But it isn't helping today. I'm too Hollow, which is my term for deep major depression. I'm too Postictal, after that unexpectedly awful seizure yesterday and its aftershock which were tiny seizures for hours. Emotional responses are foreign and results of emotion are mere symptoms, like crying and laughing. I will meditate again, do more qigong work, and breathe and much as possible.
FYI. I am having an episode of pure major Depression plus major Anxiety. This is accompanied by mild memory loss of the past two days. Everything is foggy. I know I should be upset about something, but I cannot feel upset. What is upset, anyway? I think I hurt myself emotionally yesterday. I wish I remembered what it was. I believe it started out with false happiness. Remember that weird assumption of some sort of hypomania? I think I was outside of my rational mind.

Back to special exercises.
People keep suggesting and recommending breathing exercises. I know all of that. I know people just want to share their personal remedies. I love it. Please don't think I am rejecting you. I love hearing your stories. Even the stories about yoga. I wish I could explain why just seeing or hearing the word yoga evokes a sad, upset reaction. It isn't that I am unable to do yoga. It is just that yoga extremists do not listen nor care about my need for compensation. My body was born crooked. I cannot form a proper straight line even if I held on to something. No amount of cajoling, insisting, or pushing different forms will change that. Please don't do that. Please just accept that I have to perform qi gong differently, and that qi gong included poses that are similar to yoga, and that yoga is not the greatest panacea of healing holistic practices. This is part of why I don't want to visit California, which makes absolutely no sense and makes me look prejudiced.

So. Please, please do talk about how much yoga is healing you, because that is beautiful and I am genuinely, honestly joyfully happy. But if you wish to suggest a yoga pose that can be modified for someone with a shaky, spastic, crippled body, please suggest an alternate form. That is all I ask. There is no such thing as a real panacea, even in the botanical world, even in the plant and herb world, and certainly not in the exercise world. It is entirely possible that I will find a set of yoga exercises that will really, truly help me, and I will join the ranks of yoga enthusiasts. Anything is possible. Nothing is off limits. Except evangelism. If I wanted something pushed down my throat, I will drink water mixed with special fruit and plant powders, like sea buckthorn and moringa.
This is coming from my years as a holistic enthusiast and pusher. I was bad. I was essentially an asshole. And then I learned that it was just wrong. I never want to do that again. Just because something works perfectly for me does not mean it will work at all for someone else.

Any form of good physical-spiritual combination exercise, be it yoga, qigong, taichi, strength training, cardio, dead lift weight, isometrics, plyometrics, dance, hardcore dance, etc, is wonderful and beautiful and strengthening, and will help everyone in some personal powerful way. That is the point of exercise.
I love you all. If you really want to help me, don't push me. Just guide me.
brightrosefox: (Default)
Okay, so. Calliope has a daily/nightly habit of coming to me when I'm lying down, snuggling lengthwise against my torso, resting her head in the crook of my arm, and nursing on whatever fabric is available - my shirt or a blanket. Since I've never seen a nursing kitten actually up close, it fascinates and thrills me. I can feel her little tongue doing that flittery thing and those tiny suckling noises are like an anti-anxiety drug. I need to make sure her paws aren't touching my skin, because even clipped the claws still sting.
Now, is this a thing all cats tend to do, or mainly just cats who were weaned early? I know nothing about Calliope's previous days before the humane society, and all they know is that she came in as a stray, beaten up and stuck with burrs, approximately just over one year old. It's possible she was born in a house and the litter was weaned early to be adopted out to new homes, or... similar ideas. I have no idea. She is so trusting that I am almost certain she was a house kitten. She gives me her belly and throat and leans into me with complete security and adoration. I wonder who her Person was before me. She does indeed have Egyptian Mau and a small touch of Abyssinian in those brown classic tabby genes, and her demeanor, behaviors, personality, and traits are so incredibly Mau that I think she may as well be renamed Joanna's Cat-Child. I call her that now, Cat-Child. "Oh, Cat-Child, what to do with you?"
And so my mother believes she needs to quickly grow out of nursing on me directly, but I don't. I want to believe this will be a Thing she keeps doing until she decides to not one day. I just automatically place a hand on her rump or neck and feel fascinatingly motherly while she purrs against my breast.

Also, I can't make the bed right now because cat.



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I had so much amazing sushi it was amazing. I watched with amusement as one friend requested lobster miso and got, literally, a bowl of miso with a lobster claw in it... in the shell, and no tools save for chopsticks. I wanted more sushi, and they let me have more sushi because I fucking could, oh my gods, even the waitress was impressed.
I walked around a shopping area at night with friends and I didn't have a cane and it was all fine, and I socialized easily with four good good people, and when I woke up in the late morning, I hurt so badly that the only way I could get out of bed and walk anywhere, say, to the bathroom, was to put myself back into a half-asleep state.

And then... then, I got asked to weigh in on a discussion about how "our organic bodies must learn to heal themselves without medicine blah blah blah" and I was too tired to give a smackdown, so I just warned that HOLY NAKED CATS CHRONIC ILLNESS AND DISABILITY DOESN'T WORK LIKE THAT YOU ETERNALLY FLOATING-HEAD HIPPIE WANNABE. Never tell someone who needs certain medications to function to just quit those medications, or you will have to deal with some very, very irritated cripples.
Like, HI, this drug here, synthetically derived from that plant over there, is saving my life, and fuck you. Yes, yes, the medical community likes to "push" drugs and all, but sometimes those drugs keep people alive, so seriously shut your rainbow-dribbling mouth.
I have spent over a decade writing essays and blog posts about this, starting from that floating head holistic hippie phase of Only Supplements and Essential Oils and Meditation, to Okay This Requires a Chemical Drug So I Don't Die But Can I Still Take The Supplements to Goddammit I'm Just Going To Balance Holistics, Botanicals, and Pharmaceuticals forever.
And the next person to use the words "poison" and "Harmacy" in conversation with me will be threatened with getting hidden completely if not blocked from my forum feeds. Because I really am a serious holistic and scientific advocate for various healing plants and botanicals. I am a shaman in training. But chemicals come from various places. And sometimes, the chemicals extracted by scientists have a better effect than the pure volatile chemicals.
You think side effects from FDA drugs are bad? Eat a whole plant and spend a few hours writhing in hallucinatory agony. And GUESS WHAT: some people never even get bad side effects. Trileptal. Zoloft. Baclofen. Soma. Tramadol. Codeine. Klonopin. Guess what? I'M NOT A FUCKING ZOMBIE. Guess what else? I AM BETTER THAN I HAVE BEEN. So you know what? Float on. The cloud are gorgeous up there.
But my body cannot organically heal itself, sorry. If you're on of those people who like to say, "I'm not against pharmaceutical drugs at all, but have you ever considered just letting your body work on itself naturally?" You will be met with raucous laughter that would make the Joker question my sanity.
I have been dealing with this since my early twenties. I'm gone through the ENTIRE gamut of medicines after being raised literally on vitamins and homeopathy and various therapies and acupuncture. I will not claim to be an expert. But I've had life experience.
So hey, if you're going to cheerfully toss out a casual, callous thought about how someone shouldn't take a pill anymore and see what happens, you really don't know. You don't know. And this is why I try to go out there and help educate, advocate and activist. Because if I don't, people will remain head-floating.
I was once head-floating, and it was a good high while it lasted. This is why many of my friends are scientists, medical doctors, medical students, researchers, etc. I ask a lot of questions. Because I never want to be that head-floaty again.

Anyway. I applied a cream with special oils to my chakra points on my feet, palms, and ears, and my forehead. I took my "harmaceutical" drugs. I stretched. I did acupressure. I meditated. I did my personal compensated form of qigong (of which yoga is only a small part, so don't bother), I recited various phrases to relax myself and let my darker emotions drain away.

In conclusion: If I specifically as for opinions about something incredibly specific, I ask that people stick to that topic. Unlike my friend's post, which was derailed by a hippie wannabe who happily invalidated everyone by insisting that all we need is our own organic body to be healed. Sorry, friend. I hope that drug is going to work well for you! I've never tried it, as I haven't needed it. But I'm happy to help with research.

Anyway. Sushi makes things better. Lots and lots of sushi. Lots. Sushi.
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http://www.moggies.co.uk/articles/types.html

Anyway, all of my cats are blends of gamma and beta. None of them are one or the other. But they each lean toward beta or gamma in their unique ways.

(The only alpha we ever had was Tuesday, a gray tabby... and before that, when I was a child, Muffin, a calico. Like, ultra alphas.)

But these ones. Gamma-Beta. Including the late Rose.

This is probably why Luna is struggling to maintain her dominance and claimed spaces with Calliope. Since all parts of the house are Luna's spots (a very Sheldon Cooper thing), she yells at Calliope even when Calliope gets there first. I need to remind myself that this will happen, and to not be upset with Luna. Everyone is doing Cat Things. It hasn't even been a week.

Also, Calliope slept at Adam's ankles last night. But before that, she cuddled right up under my chin, against my torso, and suckled my shirt and purred intensely. It melted my heart and my soul. Augh. My baby. Also, she is demonstrating her whip smart mind. She is already following me around when I call her and tell her where I'm going. She knows what I talk about. She is anxious to learn. She also has discovered counters and the stove. But even better, she really knows the words NO and GET OFF. Long back legs, this one. Calculating brain. I'll need to have a chat with her about that intellect. As in, this is what you can do, this is what we don't want you to do and why. *grinning sigh* This feline child may grow up to be highly emotionally invested in humans.

Okay, now that I have a domestic brown-gray-blue-black tabby mix with Egyptian Mau and Abyssinian, I'm seeing them everywhere. I need to read up on the actual breeds now.

http://www.cfainc.org/Breeds/BreedsAB/Abyssinian.aspx
http://www.cfainc.org/Breeds/BreedsCJ/EgyptianMau.aspx
http://animal.discovery.com/tv-shows/cats-101/videos/abyssinian.htm
http://animal.discovery.com/tv-shows/cats-101/videos/egyptian-mau.htm
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My medically knowledgeable best friend was right about that daily extra Klonopin. Hello, sudden sobbing breakdown and potential nightmare about my cat dying all over again.
I know she is still here. She's just not... here.
Oh, Rose-kitten. I miss your sleepy weight on my torso.
...
Oh, now this is fascinating.
I took that second Klonopin while crying wildly. Across the hall, in the other room, Calliope started meowing loudly. I went in despite wanting to just curl back up in bed. She immediately rubbed against my legs. When I sat on the couch, she nuzzled and kneaded me, then jumped down, rolled on the floor, and offered her belly. I immediately, instantly, powerfully, got a sense of "I am here to give you comfort. Here is my love, if you want it. Touch me. Love me. If you want. I am here." And as soon as I touched her face and she purred so loud my hand vibrated, I felt so calm and tranquil it was like a river becoming still after a rock had been tossed in. Mind, the Klonopin had not had a chance to work yet. But Calliope's purring did... something. I just breathed. I breathed and I stroked her and I ran my fingers through her unshaved belly fur, and she nibbled my fingers and rubbed her cheeks on them. She hadn't instantly jumped on me or rubbed my face, but she had quietly and simply offered comfort. And as I made sounds of pain and sadness, her soft mewing and loud purring grew stronger.
I know it is far too soon to tell, but I think this kitten will be a medicine cat. Not like Rose. Not in an instant touch way. In a quantum touch way. Give when it is needed. Push out serenity without nudging. Be there without being instant.
I think I can work with that...

 

She jumped onto my lap now, right as I write this, purring purring purring, and I swear it is quantum healing. Touch when touch seems okay, distance with comforting waves when needed. Yes. This is who Calliope will be. Offering. Asking. Culture of consent. Do you want me to help you? I am here if you need me. I will not disturb you unless you come to me. I understand you. I will care for you. Here is my energy. Here is my Serenity.
The way she touches me is like a healer hovering hands above a patient, drawing power from outside sources.

 

I believe her middle name should be Serenity.

 

I think she knows who Rose is...







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I've randomly started calling the kitten Calliope, mixing up Calliope and Callisto. Adam didn't mind at all. And besides, Calliope is my favorite Greek muse (epic poetry and stories).

Soo, hello again... Calliope.



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Oh, dear. I'm starting to think Luna is sort of... scared... of Callisto. The kitten dashed out of her room, ran into the bedroom, leapt onto the dresser where Luna was eating, got nose to nose with Luna, and Luna hissed, bapped the kitten, snarled - and ran under the bed. I'm not sure how to process that. Under the bed?

And here's the funny thing: Callisto is so active, excited, and energetic that I may just nickname her Pinkie Pie or Rainbow Dash. She dashed from room to room with amazing enthusiasm. She has no idea how to work the stairs yet; she managed a couple before getting confused and weirded out, and rushed back up.

My big concern is Luna and Jupiter. While Jupiter is just hissing and backing off, Luna is hissing, smacking and snort-snarling and running away. This really needs to last several days, this isolation. I'm pleased that Callisto enjoys the other rooms and appears to be... if not fearless, then at least confidant and assertive. But Luna hiding under the bed because of a kitten? That's a tad odd...

But no matter what, this little gorgeous mixed tabby Egyptian-Abyssinian girl with the golden jade eyes is definitely my kitty.
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Anyway, I must say that we adopted a kitten a couple of days ago. She's a brown tabby domestic shorthair with Egyptian Mau markings and Abyssinian ears. They had named her Willow. We've named her Callisto. Adam and I had originally gone to the new local shelter still being built, saw that it was not open, and abruptly decided to go to the shelter in Rockville, just to look. Hah. We walked through all the cat rooms. Just to look.
She was in the very last room, the sick room, and we reached for each other physically and psychically, and I knew. She was already spayed and given vaccinations, so all we need to do is take her to a vet with a free coupon.

Callisto will never replace Rose. She will help heal the burning hollow emptiness.



























She is small, long, and tall. She adores curling up on a lap and suckling on a shirt whilst kneading and purring. She loves rubbing against people, mewing for love, and playing with toys.
Luna and Jupiter have actually been fairly okay with this. They've both touched noses with Callisto - Luna smacked her and Jupiter has hissed at her several times, but this will take many days. Hopefully by next week things will have settled down and sorted out.

All I know is that I am in love, and so is my husband.

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Back pain back pain back pain backpain backpain backpain NNNGGHH.
It's the lumbar area, leading to sciatica down both legs. Of course, you know? I've got an appointment with my new orthopedist on January sixth, and we're going to get be fitted for true customized orthotics... although I am going to insist they be cushioned, if not highly comfortable. The ones I had as a teenager actually made my feet hurt whilst walking. I still have the left one from those days. It is not comfortable. I understand practicality and function, but still.
Nnngh. Back, hips, legs, knees, ankles. Come on, drugs, work faster.

When we came home from grocery shopping, I looked up at the stairs and whispered, "Mama's home, Rose." I had meant it merely for her memory, for her spirit that now lived in the house, free to leave the clay statue that was a vessel, as Adam had not bound her to it. Adam said, "She's still gone, sweetheart." And I knew, and I reminded him that it was just... oh, I couldn't even find the words. It was just for her ghost. But he knew. We held each other and he knew.

My friends have cried for me, I think, more than I've cried for myself. I will have pockets of moments in which I will break down in gasping sobs, but they are so quick and triggered. A brush that had moved through her fur while I was comforting her in her lethargy, before I understood what was really happening, tufts of fur clinging to the bristles that I may not remove for a while. My pillow, and the soft bean-bag type pillow behind it that served as a general cat pillow but which was generally used by Rose especially in the mornings. A bag of Greenies treats that I realized I no longer had to move to a high place where Rose couldn't grab it and tear into it. Sitting in this desk chair, now, and knowing that Rose will never jump onto my lap and rub her cheeks over my mouth. She will not curl up on the floor, waiting for me to announce that Mama is going to bed so she can lead me there and see me to sleep. Oh. Yes, I'm in tears now. Oh, babygirl. Luna is on my lap now, kissing me, nuzzling. In her own Luna way.

We will be adopting another cat. Yes. It may be sooner than anyone thinks. I've already dreamed of her. I've already named her. I already know her age range. But... you know, someones through the grief and the numbness and the deep deep shock and the horror of physical death, we know deep deep inside that even if it takes only a week or two to get another pet, it is nothing like a replacement. It just means that the throbbing empty hollow burning in our hearts might start to heal, just a little. Luna is still my heart and soul, my queen and my moon goddess, my precious love. Jupiter is still my beautiful big boy, my chatty feline child who brightens my day just by smiling. The new kitten, the new young cat, will never be Rose. She will be herself.
Rose is never coming back, not even in a new incarnation. I'm not even sure I want that; it might hurt too deeply. Rose herself was already the reincarnation of Adam's patchwork dog, Ralph. Rose spent five glorious years learning to love and be loved. In Buddhism, that is a vital thing. All animals understand this. It is slightly Jainist. Adam and I, in our eclectic paganism, are mildly Buddhist in various, often conflicting, ways. It is not possible for us to be fully Buddhist in any way, but eclecticism is a wide arena.

"Life is a journey.
Death is a return to earth.
The universe is like an inn.
The passing years are like dust.
Regard this phantom world
As a star at dawn, a bubble in a stream,
A flash of lightning in a summer cloud,
A flickering lamp - a phantom - and a dream"
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Last night... I dreamed that we went to the shelter and adopted a young cat - a kitten, really, a domestic shorthair tabby - and the gender didn't matter, but the name meant "Life" or "World" or anything magical...
Emma. Zoe. Zoya. Gaia. Vita. Asha. Mira. Zena. Yuki. Saturn. Nova. Chronos. Rhea. Deus. Dragon. Elfin.

Why did it have to be so soon? My heart/mind already is desperate to fill that abyss. Rose was that kind of cat, after all. Everyone says their cat is incredibly unique. Rose was incredibly unique. I don't even know.

I know well enough that I need a cat whose personality and behavior involves pure love: holding, hugging, cuddling, nuzzling, trilling, adoration.

My heart needs time to heal. I know. But soon enough, that cat will be waiting for me.

I don't know what I will do. Emotionally dead one moment, sobbing wildly the next minute. I know this is normal.

Luna snuggles me and purrs louder than ever.

Yes. I want a third cat.

I don't know how I will feel or think tomorrow.

I am not used to thinking in the moment.
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Since I am still in shock, I feel like I'm moving through the Kubler-Ross stages of grief completely out of order. I've accepted that Rose is dead and I am deeply depressed. While I held her waiting for Adam, I knew she was dying and I was already angry and bargaining. When the vet said she was critical, I accepted and realized she was probably going to die. When she coded and they couldn't revive her, I accepted and understood, then went right on to bargaining again, blaming myself and how I just kept waiting. It became anger, wondering how the fuck a five-year old cat with a clean bill of health could suddenly present with congestive heart failure and die so quickly. I became angry that we hadn't figured it might be genetic. I became depressed that I couldn't have known. I still blamed myself for not finding a way to take her to the clinic sooner.
When we held her body, I went through acceptance and depression again, followed by deep gratefulness that at least she waited until Adam came home, that Adam got to hold her, that she knew how much we loved her. Depression again. Acceptance.
No denial. Slight isolation.
I updated Facebook right there in the clinic's comfort room, since in this age of instant communication it was much faster than a sobbing phone chain. We finished holding Rose and signed the private cremation form. We walked to the car. My best friend Beca called and all I could hear was her screams, and I cried. She and her husband James came over with food: Whole rotisserie chickens that I ripped into because I hadn't eaten all day. Alcohol because it helped dull the pain. Being a doctor, she commanded that I keep taking Klonopin, as well as baclofen, two to three times a day just to keep my mind and body from shattering.
I realized how desperately I needed them there, and she knew it, and late that night she brought me to bed, fed me my drugs, and climbed into bed with me. Adam was downstairs on the couch with James.
I clung to my plushie ginger tabby Haiku all night. Beca and James left early this morning, and Adam came up to sleep with me. I woke up and instinctively reached behind my head to the soft pillow where Rose would be sprawled out, and I made a soft whimper of intense pain, because she wasn't there.
And Jupiter has been meowing, softly. Meowing and meowing. I don't know how much he understands yet. Luna has been so quiet, but always there, always ready for a hug. It's only been a day. I've only shed a few tears. The real grieving hasn't begun.
People are gently discussing taking me across the street to the new shelter on Solstice or after Christmas, to let me adopt a cat. Others have suggested waiting a few months. I cannot wait. Because I don't believe in waiting for too long. My heart cannot take it. I cannot spent months mourning and empty when a pet dies, otherwise I may lose my mind. See... After Tuesday died in November 2006, I spent four agonizing months with a growing, burning, echoing hole inside me, until I begged Adam to take me to the old shelter on Rothgeb just to look, just to see... and that was where Luna stole my heart and filled my soul. And one year later, my other best friend Charlotte begged us to come see her former coworker's new litter of five female gingers, and Adam picked up one, looked into those wide bright sunny eyes, and announced she was coming home. And Rose took our hearts and ran.
I never expected the baby of the family to be the first to die.
I think we will always be a three-cat house now.
I want and do not want isolation. I don't want platitudes. I am completely fine with "I'm so sorry for your loss" - as "sorry" is shorthand for "sorrowful" and it helps me to know that others feel the loss and mourn with me. But I am depressed. And I don't know what to say.
We have been getting so many phone calls and messages.
She was only five years old. I guess it was genetic. She was so young.

Now, her soul resides in the gold-cream clay sculpture Adam had made in her likeness months ago. Adam absorbed her energy, stored it, released it, and made sure she would stay with us.









The house of Rose's soul.
Oh sweet Bast, please love Rose and care for her. Give her sweet cuddles and nuzzles and kisses. And give her as many treats as she wants.
With Adam Paul, the sculptor.
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I'm too much in shock and too tired, so I am copying from Facebook.

Yesterday Part 1.
I don't think I'm having a nightmare. But if I am, I just want to do something to make Rose stop panting rapidly and lethargically with wide pupils and mild legarthy. It is four in the morning. I have no car. I could call a taxi service to take us to the Nebel Street emergency clinic but I can't think straight. Maybe she is having a cat anxiety attack. Maybe it's nothing. Maybe it's nothing. I will stay awake for her. I will offer her treats. I will remain calm because Klonopin is in me and I cannot panic. She is letting me cuddle her. Maybe it's nothing. I need it to be nothing. It's four in the morning and I can't drive and I can't find a carrier and vets don't make house calls. I need this to be nothing. Bast, please let Rose be fine. I will stay awake.

Yesterday Part 2.
Okay. Rose is okay. I mean... well, she did turn down Greenies, which never happens, which means she may not be hungry or is just very tired. When I pressed my ear to her side, I didn't hear anything unusual, just breathing and purring. But she also turned down water and food, which makes me concerned. Her nose is dark... is that a thing? I mean, it's not that 'normal' bright pink flush. She is also acting physically weak - when I picked her up she went limp, and when I put her on the dresser with the food and water bowls she looked almost depressed. She then jumped off and lay on the floor and mewed. I think it's allergies or maybe the start of a cold. She is absolutely lethargic. There isn't much I can do right now - I don't want to rush her to a vet right now just out of worry. She's breathing fine. Adam won't be home until tomorrow, though.

Today Part 1.
As soon as Adam gets home we are rushing Rose to the VCA emergency clinic on Perry Parkway. FYI. Her breathing troubles are much worse.

Today Part 2.
Rose Sunshine Paul.
Time of death: 2:20 PM December 14 2013. VCA Veterinary Referral Associates.
My cat died of heart failure caused by liquid around the heart and lungs.

Today Part 3.
Rose Sunshine Paul.
April 2008 to December 2013. Confirmed cause of death: fluid around the heart and lungs. Heart attack and shock.

At the Gaithersburg VCA Veterinary Referral Associates, the closest pet emergency hospital, the one we have been going to for years since its Darnestown location... they called in every single doctor and nurse into the ICU since Rose was already severely critical. They did everything possible to stabilize her even through the Code Blue. A dozen veterinary specialists for one little cat. They spent 15 minutes on resuscitation. Dr. Marc led us to the comfort room and said there was nothing else to ben done. Let me stress that every single doctor was in that room working to save our cat.
We opted for a private cremation. Just like Tuesday and Ralph and Puff, with polished wood boxes and name plates and clay discs with paw prints. These people were wonderful.
Rose died knowing she was dearly loved. She knew how intensely we cherished her. She loved us with every part of her soul. We were tribe.

Adam and I held her in the towels and hugged her body, and Adam absorbed her soul. At home, he transferred Rose to the sculpture he had made, with gold and cream paint. Rose as a soul will always be with us.





Read more... )
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Yeah. The snow and snain and slush was all worth it. I got to the CVS pharmacy and back by bus without incident. Plus, a free battery operated shaver thanks to CVS Reward Dollars and coupons (I may never need to balance painfully on one-legged in the shower again).
Ah, snow, you've arrived. This part is cool with me. You are soft and powdery and easy to shovel. No ice just yet. You're barely a few inches. I can hobble and wobble and limp and stagger easily.
You see, snow, I don't actually hate you. I only hate your frozen ice parts. The part that really hurts when I slip and crash. See, at least right now you are still powdery and cushiony enough to help me land softly.
I don't hate snow... we just don't get along.
Now I must decide if I want to take the bus to the pharmacy now or tomorrow. I don't know if it matters anymore. These particular refills can wait a couple of days.
Also, whoever invented those magic gloves that let you use your smartphone must have known about Raynauds Disease.

I totally went out to the pharmacy. It started sleeting. A guy asked me if I needed a ride home. He had seen my cane.
Yeah. The snow and snain and slush was all worth it. I got to the CVS pharmacy and back by bus without incident. Plus, a 'free' battery operated shaver thanks to CVS Reward Dollars and coupons (I may never need to balance painfully on one-legged in the shower again).
I'm learning how to use the cane to help me march, scrape, and also test for icy spots. I think the only actually good thing for me is that cold weather helps my asthma issues ease up. Part of me really wants a quad cane for more properly balanced stomping through snow.

To quote Scottish singer Susan Boyle regarding her official autism diagnosis: "Now I have a clearer understanding of what's wrong and I feel relieved and a bit more relaxed about myself."
-Also: why I won't stop talking activistly about it and why I embrace names and labels, but also why I will stay silent at parties, since I seem to be a talking disaster.
Time and place. Time and place. Just because medical science words are a ASD special interest for me doesn't mean I should, well, you know the rest.
(To certain people:
I'm not like you. I embrace diagnostic labels. Names have power. I know what to do with a named thing. You truly feel I must be giving up and in. I truly feel you must not know me well now that I am changing again. Always changing in tiny ways no matter how deeply I stay predictable and ever the same. So I have decided to personally not tell you about all the new details my changed self parts. You don't need to know and I don't need to be smacked down for speaking.
Facebook and LiveJournal are places to chat with like-minded people who will give me stories. You don't have to listen. It's okay. It's just random life.)

Also. Jupiter has been randomly lying on the bedroom floor on Adam's side of the bed, forlornly, so I grabbed a couple of Adam's tee shirts and draped one over his pillow and one on the bed so Jupiter could be surrounded by Daddy's scent, and so I could wrap him in a shirt and snuggle him if needed. He is very emotionally needy and co-dependent, far more than Rose who literally begs for love, so any chance to make the boycat happy and not depressed is a major goal. He's the kind of cat who will gently flop himself onto your pelvis and torso for hours just because you're on the couch. He always seems so anxious. He just wants to know if you will love him or feed him and he'll miss you when you leave. He meyowls up from the bottom of the stairs because he has a toy, he wants to find you, and he knows how great the acoustics are. He's harmless and wonderful, and very very attached - I cannot bear to think of what will happen to him if something happens to us. Poor sweet puppycat.

Speaking of scent, Adam got me a bottle of perfume during his Las Vegas job trip a couple of months ago - Nude by Rihanna ("Fruity aromas of guava, mandarin and pear are located at the opening of the composition. The heart is blended out of white flowers: gardenia petals, velvety Sambac jasmine and creamy orange blossom. The base consists of sandalwood, vanilla orchid and "second skin" musk."). We both love it on me. Sweet and soft and floral and deep. Now I really want Killer Queen by Katy Perry because it is a fruit and flower explosion ("Top notes include wild berries, dark plum and bergamot accords. The main note of the heart is velvety red flower, Celosia, but there are also Sambac jasmine and rainbow plumeria. The base contains cashmere, patchouli and liquid praline"). Oh, indeed.
My personal signature scent, created via Etsy, called Moonlight Witch, consists of real pure extracts Amber, Blue Lotus, Dragon's Blood, Coffee, Chocolate, Green Tea, Coconut, Frankincense, Myrrh, Blood Orange... but I do love exploring various notes and scents when I can.
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Things are moving along very very well. Mom and I haven't even gotten annoyed at each other, not once.
Adam and I traveled through Sag Harbor and Southampton cheerfully. My parents gave me prepaid gift cards, which I spent at Provisions in Sag Harbor and Second Nature in Southampton, both small local natural health shops that sell some products I can't find in Whole Foods, Roots, Dawson's, etc.
Dinners here have been fantastic, between Mom and Adam as chefs. Mom gave me several pairs of jeans, which she hemmed, as well as jackets and blazers. But the best was a pair of beautiful black Doc Martens ankle boots that zipped up the sides and featured perfectly fashionable soles with incredible tread. They look like these, with silver buckles for a visual fashion look. http://www.ebay.com/itm/NEW-Womens-Dr-Martens-Leather-Black-Silver-Zipped-Ankle-Boot-size-6-/221295045046?_trksid=p2054897.l4275 I am seriously in love; these are like the ideal ankle boots for me, with my spastic ataxic hemiplegic cerebral palsy. Mom always sends me home with clothes that no longer fit her, so I know full well to pack light. But oh, these boots. Oh, how perfect.

Yesterday, I did have an intense fibromyalgia flare with extreme fog and fatigue, which was all right, because I was able to take naps throughout the day.

Today, I was overloaded and overwhelmed a bit, and I did have a complex partial seizure, which Mom and Adam soothed me through. When I'd woken up this morning, the hemiplegia was in full force, causing near-paralysis. Adam helped me stretch, and then Mom came up to help as well. We wound up playing Rock Paper Scissors Lizard Spock with my left hand. Success was achieved, and I got dressed without incident, pulling on a beautiful sweater vest from Mom's collection. Dinner is still being made. Turkey, brisket, meatloaf, all the sides. The menorah is out, some pagan symbols are around, we've been watching science shows, shows about quantum physics and the supernatural, and atheist documentaries. Now Adam's Playstation is showing Futurama. Ideal.
Also, we watched Pacific Rim again last night. Mom hadn't seen it, but as she has always been a Godzilla fan, she appreciated all the kaiju themes.

Everything is truly going well. This may be the first Thanksgiving where Mom and I did not argue even a little. Especially now that we can discuss the autism and other neurological issues I've been having. She knows me so well, but now we can really get to understand my brain. Beautiful.

Also, according to today, Adam and I have been together for fourteen years. 14 years. Yes.
brightrosefox: (Default)
Some random rambling about my own mind, my imaginary friends, and how my mind likes to invent coping mechanisms that talk back.

One of my imaginary friends, Amara, who is the human coping mechanism in charge of all the neurochemical, neurodevelopmental fuctions, has been interacting with me more and more ever since Alicia (the epilepsy mechanism) and Serena (the pain, fatigue, psychological, neurobiological functions) urged her to show herself more often after I fell into a chemical depression with severe anxiety. Serena and Koan could only do so much.

Amara, at the beginning of her creation, was not even human; formless and elemental. These days, she is human shaped but she loves to take bits of my writerbrain as inspiration. Her ears are pointed and her eyes and hair change color with her moods. She likes to mimic my bone structure and basic figure shape, just with more muscle intensity. Serena says it's because Amara wants to show me that I am beautiful.
Also, when I saw a Google image painting of a woman with elf ears and a unicorn horn, posing with a unicorn, Amara insisted I make it my current Facebook cover photo. She made herself up to resemble like that character while still mimicking my features, including the horn that represents the third eye - just with chestnut brown streaks in her white-lavender hair and honey brown flecks in her intense blue eyes... although none of that is her true coloring. When she made herself human, her coloring randomly became alabaster skin, gold eyes, and pale flame hair, essentially inhuman. But she kept the mirror shape of my skeletal structure and body shape. She even plumped her lips, made her eyes bigger, and made her nose smaller, because she knew I desired that. It makes me smile, which I think she likes. She wears the same jewelry as me, the same clothing colors, the same makeup colors. She is determined to "reboot" the parts of my brain that are having trouble accepting the recent flooding overload of information about these disabilities and chronic illnesses. The name Amara means everlasting, eternal, immortal... which is why she was formless and elemental to begin with. I finally understand why I created her. And she wouldn't mind being the inspiration for any stories I write. I'm grateful for that.
She insists that my jaw, hair, and eyes resemble the jaw, hair, and eyes of Elena Risteska from Macedonia, which I agreed with and humbly accept with a simple thanks. The only way I even knew about Miss Risteska was through searching for shades of brown.
http://upload.wikimedia.org/wikipedia/commons/e/e2/Elena_risteska.JPG
http://img27.fansshare.com/pic34/w/elena-risteska/1200/12861_elena_risteska.jpg
http://userserve-ak.last.fm/serve/_/18051115/Elena+Risteska+elena+r.jpg
https://fbcdn-sphotos-e-a.akamaihd.net/hphotos-ak-ash3/p480x480/578088_479387062121006_1822646409_n.jpg
http://img27.fansshare.com/pic34/w/elena-risteska/1200/12858_elena_risteska.jpg
http://tekstovi-pesama.com/g_img2/1/e/28986/elena%2520risteska-10.jpg
She just wants me to feel better, to feel my own positive human emotions. Since Amara is still learning about humanity, she looks to Serena for help. In my dreams, they have amazing conversations.
I'm so glad I created these characters. They help keep me sane, emotionally stable, intellectually stable, and psychically curious. Also, every time I meditate and concentrate on my third eye, I actually feel a short unicorn horn on my forehead.
https://scontent-b-lga.xx.fbcdn.net/hphotos-frc3/1469926_10151743304270684_204893984_n.jpg
I just love that my own mind is creative enough to make up whole people with entire personalities, back stories, individual appearances, individual likes and dislikes, and actual behaviors. They mainly come to me in sleep dreams, daydreams, and meditations. My psychotherapist adores the fact that they exist, which relieves me. It's just one of those things that I, Joanna, have in my brain to help me handle all the stuff that life gives me. Awesome.

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