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)
Comments on an article about "bone broth" becoming a hipster trend:

"Congratulations, hip white trendoids with a penchant for fad diets and nutritional woo: you have discovered soup. Well done."
"Isn't that what "stock" is? Like beef stock, chicken stock... You know boiled animal parts you season and make soup with?"
"Yes, but we can't call it that, or the white hipsters can't Columbus it."
"But the real question is "what did they think soup was made of before this?"
"Everything delicious will be discovered and given magical toxin-curing properties, and then will be priced out of range of the people who actually normally eat it."
"I really can't with this nonsense. One would think with the whole "slow food" aspect of hipster eating trends that they MIGHT ACTUALLY BOTHER TO LEARN WHAT FLAVORS THEIR FOOD"
"Bwahahahahaha. Bone broth."
"Yes, because "soup bones" didn't exist as a term or a thing before now."
"The best thing I ever saw from a bone broth aficionado/hipster-in-all-manners-of-food-fads was a post on Facebook with a picture of her bone broth saying, "I know this is going to cure the flu I came down with this week! If you get the flu, try bone broth!" I was like, "Oh, how novel! Except this sounds like the advice my grandmother gave me 30 years ago to try some homemade chicken soup (with broth made from, you know, chicken carcass) when I was sick. NOVEL AS HELL."
"Columbusing has gone so far, white people are starting to Columbus WHITE THINGS."

So, anyway. Thanksgiving vacation went very well. It was sweet and quiet and seeing my parents is always always always wonderful. I was worried Mom and I might have Discussions about my health, but all was well. Adam got a rental car from his boss in exchange for working an AV job in Manhattan while our car was at a mechanic's. So, on Saturday, Adam and I drove to New York City. He worked in Times Square to set up AV/IT stuff for a medical conference in a hotel while I lounged in our separate hotel a few blocks away, working up the courage to walk all the way to 5th Ave and back. I passed Rockerfeller Center, I found stimming toys in "I Love NYC" shops, Adam bought me a bottle of my favorite perfume, Euphoria by Calvin Klein. We ate pizza, fried ramen, caprese sandwiches. I had coffee at one of the best coffeehouses I'd ever been to. On Tuesday, Adam's job ended and we drove back to Maryland. Adam's car was still in the shop in Virginia near his workplace, and it was two more days before he got it back. It had stopped running originally. It's fine now, but we were told to start looking at new used cars over the next few months to a year. The station wagon is a 1999, after all, and Ford may not have parts anymore.

I haven't been feeling well in general. But I have stuff that makes me happy.
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)
https://www.dropbox.com/sh/kortss8x9wfkdn0/AAA--sqw--nZpKp8bl2C5pa9a?dl=0

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

Anyway, my dad is amazing. This is chilling, you guys.
brightrosefox: (Default)
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.
brightrosefox: (Default)
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)


We started out at 7:00 this morning, made a few stops, and got to Sag Harbor around 2:00 this afternoon. Now at my parents, digesting dinner, watching television quietly, and getting ready for an early bed. The rest of the week will see us going around Southampton and Bridgehampton and relaxing with pizza and bagels.

brightrosefox: (Default)
I went physically to the local Social Security Office this morning just to make sure they were processing my Medicare Part B request.
They said everything will kick in come December 2013. And that while my December SSDI check would come minus the Medicare monthly premium, they would retroactively date it all back to the beginning of November. As soon as I get my new Medicare card, I can call Medicare-Aetna, get my Part C in place, and have everything done. Part D will be included in Part C. I have already checked with Medicare Aetna and all my doctors and my pharmacy, and all will be accepted. Then, once I've made absolutely positively certain that things are in order, I can cancel this expensive private CareFirst insurance, switch all my doctors and prescriptions over to Medicare and Medicare Aetna, and save nearly a hundred dollars a month.
*Fluttershy YAY*
And here I was worried it would be too much of a terrible hassle.
Wait - knock on wood. It's Medicare. Breathe. But, I mean, none of my medications nor specialists fall outside of that... that... what's it called... that area where they go "Ehhhnnn, this might not work." Everything looks great on my end.
*Fluttershy YAY?*

Also, I have a Twilight Sparkle Beanie Baby.

Adam has off tomorrow, after working hundreds of hours in the past two weeks. If I feel up to it, I will go with him to Annapolis to see Mikey, so we can go to the school and give Mikey his very own smartphone and headphones (my old Galaxy S3 that got waterlogged and then magically fixed by Adam), with audio books and piano keyboard apps and all that. Anything to help my beloved brother-in-law communicate a little louder, since he is non-verbal and has so so much to say.
If I don't feel well, Adam will go alone. If he does, I'm hoping he will stop at the Donut Shack. I'd make a list of flavors. But I should be okay to go. I miss Mikey.

We've made our Thanksgiving plans. Once we get our house-sitters settled, we will go to Long Island, The East End, Suffolk County, The Hamptons, Southampton, Sag Harbor, my parents' house. And we will rest and relax and I will gorge on New York water, New York pizza, New York bagels. Oh yes.
brightrosefox: (Default)
I have been feeling sick and exhausted and in pain for weeks, and I know obviously and factually it is the fibromyalgia. But still. Sick exhausted in pain etc.

Of all the people to tell me, "All doctors are just drug pushers; it's what they do!" I never expected my mother. The skeptical atheist rational person who always fact-checked and looked at all sides of a story. I know she raised me on supplements and alternatives, but she knows damn well that I need pharmaceuticals to balance supplements as part of my pain management.
And I was only talking about how my husband's new physician gave him a prescription for a painkiller, and how I said that it was my husband's request ("Noo... actually, Adam asked for the Vicodin; the doctor didn't push it; it's the only painkiller that really works for Adam."), and even then my mother was doubtful and disbelieving. I... just... what? Did my own mother, my best friend, my support system, my beloved fellow Gilmore Girl, did she really just say that to me?
Really, if there is one phrase that makes me twitch, it is "All doctors push drugs! They're just in it for the money!" Because how dare a doctor talk to a patient about trying a medication or three that might alleviate symptoms?
Sorry. Bitterness showing. I need to discuss this with my mom, as I usually do. It just stunned the hell out of me. She and I have always connected on an amazing level. But I feel like she is moving so far toward the extremist part of the "Allopathic Synthesized Medicine Is Darkly Evil While Holistic Natural Medicine Is Purely Perfect" crowd that it is starting to scare me.
And she still thinks my taking two painkillers and two muscle relaxants as needed is excessive. Wait till she meets some of my chronic pain friends. Wait. That's it. She's never known anyone with chronic pain. She doesn't know anyone with major depression. She really has no idea what it is like. She admits that. So I will cut her a lot of slack. But it doesn't excuse what she said. I never thought she assumed that about any doctor. And now I feel kind of sad. I feel like saying, "What happened to my mom?"
In any case, I know it will be fine. She and Dad are living and eating heathfully, no major health issues, lots of friends, lots of things to do. They are living their lives very very well. I am proud and happy and in love with how they are happy with their lives.

But still, doctors should never all be lumped in with drug pushers. And, of course, patients should never all be lumped in with drug seekers.
Sigh.

(EDIT: Well, the good news is that when I brought it up with my mom, she apologized sincerely, said she wouldn't do it again, and explained her reasoning: When I was 16 and developed sciatica, the diagnosing doctor just wanted to give me heavy narcotic drugs and Mom did that comedic slow back out of the room thing with wide eyes and never took me back. So, I understand her worry. Luckily, she never was one of those extremists. She trusts in vaccines deeply, she just doesn't like when they're given several at one time, which I can understand.)

Anyway.
I found a movie on Netflix called "Hansel And Gretel: Warriors Of Witchcraft" and I think the only reasons I clicked to play were: 1. It might be as fun as "Hansel And Gretel Get Baked" 2. The main male actor is named Booboo Stewart (okay, his nickname; his sister is Fivel). 3. For some reason, Eric Roberts is in it.

From the summary, it appears that Hansel and Gretel are witches themselves who hunt the more... cannibalistic witches.

The actors are pretty. The main two are siblings. They are very pretty. Japanese, Chinese, Korean, Blackfoot, Russian, Scottish. That is like one of the most beautiful combinations of heritage ever.
brightrosefox: (Default)
Something that really, seriously disturbs the hell out of me:
So many of my childhood memories are not real. I've been patching them together, filling holes with other holes. Like my mother's first marriage, how my parents actually met, when I first dyed my hair, how we got my first kitten. I swear to my mother that she told me these things and she denies them vehemently with her amazing memory... which means I am taking memories of all sorts of things and smashing them together to create new, fictional memories. Part of me is absolutely terrified that I have become my own unreliable narrator. I have told all my friends these stories, and now they are no longer true.
When my parents first met in the '60s when she was 16 and he 25, My father did yell at my mother about touching his paintings, but only because she backed into a painting, in his studio, after being awestruck, because someone introduced them. My mother's first husband started a truck company to shuffle around 1970s rock bands, they never went to Woodstock, and as soon as they divorced Mom and Dad moved in together and married seven years later. The story of my technically miscarried brother Jesse is still true. My mother never dyed my hair red. My mother was the one who chose Muffin because she was the only calico in a litter of white. I did scribble the names of all the Ninja Turtles on my bedroom wall in permanent marker. My mother and I really did have a telepathic moment when naming a porcelain doll when I read her mind.
I don't think I can trust myself anymore.
brightrosefox: (Default)
This may be the first time I've ever said this, but I am grateful for who and what I am and what I can do and my own potential.

I am grateful for my husband, Adam Paul, whom I have loved for thirteen years and still feel that giddy joy that comes from falling in love deeply until the neurochemicals and hormones inside me explode into insanity. I am grateful that he is such a mensch - that he is almost a polymath in certain ways, that he knows so much and does so much and is so much. I believe I struck the lover lottery with him. Seven and a half years of marriage still feels like a honeymoon.

I am grateful for the friends that are still with me, who still love and adore me, who like me for myself, who respect what I am unconditionally. I really do love you all so much that it brings me to tears just to think about you; it doesn't matter if I know you in person or I know you online only, I love all of you intensely.

I am grateful for the medical assistance I have been receiving since being placed on SSDI. Somehow, I have fallen in with a team of doctors and specialists who are so compassionate, willing, kind, sweet, and intelligent that it also brings me to tears.

I am grateful for my parents, who have supported me and loved me and shaped me and have set wonderful examples of love and talent and creativity and joy. I am grateful that I was raised by an atheist mother and agnostic/semi-pantheist father who enjoyed teaching me about various mythologies and religions to allow me to choose my own path. I am grateful for their intense, amazing love for each other, and their combined ability to do whatever needs to be done to help me become myself.

I am grateful for knowing firmly that I am a polytheist, polyagnostic, pantheist, eclectic, humanistic pagan witch who is fully open to the understanding that I could be wrong or delusional.
I am grateful for being able to access the skepticism that lets me step back and view things from so many perspectives.
I am grateful for quantum physics and theoretical physics, which I consider to be occasionally mixed in with supernatural and paranormal magical practice. I am grateful to be a magic practitioner who loves to hear dissenting ideas and theories that enrich me and expand my brain.
I am grateful for my Quantum Psychic Consciousness, which is my Higher Brain mixed with my Subconscious Mind, which is always in touch with all sorts of things that can never be measured, understood, known, seen, or felt by simple human experience.
I am grateful for the universe, for being made of stars, for things that we as humans may never be able to understand even as they insist on a lack of proof and existence. I am grateful for the unseen beyond the veil, no matter how real or unreal it is.

I am grateful for my powers of writing, specifically my ability to write urban fantasy and future fantasy and supernatural or paranormal fantasy. I still want telekinesis, but I will settle for writing characters who have telekinesis.

I am grateful for my ability to take life in stride, even if I often don't get the joke. I have learned to not take everything personally, to become a rock in a river, to become a river over rocks, to move without fear of ridicule anymore.

I am grateful for my knowledge of skin and body medicine, so I can happily reply to my friends when they ask for advice. I am grateful for concealers and makeup, which I will always use because they enhance the palette of my face, even if somehow my skin becomes smooth and flawless.

I am grateful for who I am and what I know and everyone who loves me. Thank you.
brightrosefox: (Default)
We reached Sag Harbor last night. It was easy and fun. My parents are ecstatic. Last night I slept so well that I needed to be nudged awake.
Today, we shall simply hang out, watch Netflix and play Playstation 3 and Adam can play games with Dad. Mom and I can go through her jeans collection or visit thrift shops. We can have New York pizza and New York bagels. Mom and I can bicker over my mental and physical health, my spending, my life, my eating habits. It will be a rich, full week of comfort and security and love and happy. Also I have so many books to read. And we can walk to Long Beach. And the library.
Also, Thanksgiving will mark thirteen years since Adam and I officially became a romantic couple. We are at the seven and a half mark of marriage. Awesome.
brightrosefox: (Default)
I have a new dress. It is a real dress. It is a strapless red nearly ankle length dress with a black ribbon around the waist and black trim around the bust. The bodice fits snugly. The skirt is flowing and loose enough to spin in. It is a shiny material. It is a shiny dress. I have a lacy little cotton jacket to conceal bra straps and to feel more comfortable and less shy.
I feel weird in a dress
like this. It is fine for weddings and parties and things. But it stuns me. It confuses me. It startles me. Thank gods for the black jacket shawl thing that comes to my waist. I have opaque black tights, black socks slouched because I need foot padding, and fancy black ankle boots and my shiny black butterfly cane (because fuck you I'm disabled). But I am fascinated by this dress.
No one who sees this dress would ever think I would wear it. I will have dark satiny red lipstick and shimmery black eyeliner and I will try to blend into the background because I am still too shy at gatherings and this dress waves hello.
I will eventually need another dress. One that is not so "Holy shit, is that Joanna? Whoa." A dress in purple or blue, hopefully. Maybe a Grecian style that helps accentuate my curves without making the curves stand out too much.
Oh my gods, I want dresses. Me. The girl who wrinkles her nose at dresses. Pretty dresses. Fancy dresses. Semi-formal dresses. I feel weird.

Applying red nail polish with extremely shaky, spastic hands is fascinating. My fingers look covered in blood and wine and liquid rubies. It's kind of awesome.

Packing for vacation always feels weird and funny. I'm too used to being at home, with the cats and my books and my comfort zone. However, amazingly enough, there is no anxiety, no nervous feeling, no worry, not like all the other times since 2001. Klonopin and Zoloft are good.
I will wear my pretty red dress with the long black shrug and I will be at my cousin in law's wedding and try to not be noticed, and then we will go to Sag Harbor and I will be surrounded by pure comfort and silence at night and the beach and the pier and a quiet quiet village and my parents.
Still, vacations make me feel twitchy and I really still don't know why beyond comfort zone issues. We don't need to leave until Friday morning, so I will have all of tomorrow to breathe. The cousin's wedding is on Saturday, and I can get through it, and I will have my cane, and if people want to talk to me, I will talk, but I will mostly sit and be calm. And then, the Hamptons, for a week, and I will be fine.
brightrosefox: (Default)
It has been a strange and interesting past week. Mostly because I barely remember it.

Adam has been working locally down at the Gaylord National Hotel and Convention Center in DC. But he has been home, we have slept together on consecutive nights, it is fulfilling and wonderful as always.

I returned from my appointment at the National Spine & Pain Center in Rockville. New refills. Still need the knee x-rays. Tomorrow will be physical therapy and biofeedback at MedStar NRH National Rehabilitation Network in Rockville. My first biofeedback session. I am excited and eager.

I need to pack luggage for almost two weeks. I need to count out enough of all my medications, I need to make sure my charcoal dress and opaque black tights are folded and ready. I shall bring my prettiest cane, with the best rubber handle.

On Friday, we will leave in the early morning and drive to New Jersey. We will stay with Adam's aunt, Ann, overnight. On Saturday, we will get dressed up and go to his cousin Stephanie's wedding. Adam knows and adores every single cousin, and I haven't met many. Stephanie is very sweet and kind. I'm not nervous about being a wedding guest as a cousin by marriage, but I imagine the amount of people will keep the Klonopin close. Adam has a large and geographically close family. We will see his parents, coming up from Florida, and I shall be thrilled to see them, of course, but will hold back kindly many things.
(Libby is the epitome and encyclopedic definition of Jewish Mother Stereotype. Overbearance, manipulation, martyrdom, powers of guilt trip beyond that of mortal humans. Our wedding in 2005 became her wedding, naturally. Everyone worked to the bone to keep me from shattering under the weight of Libby's machinations, manipulations, and cheerful cluelessness about my attempts to make it more pagan than Jewish. There was compromise. No mention of any god in the vows. The chuppa was adorded with flowers and non religious art. The ketuba was painted by my artists parents with pagan and nature symbols. Adam wore the tallit. We drank the wine. Oh, we drank the wine. I walked down the aisle to the theme to "The Princess Bride." The bridal party walked to Steeleye Span's "Black Swan." Our first dance was to The Waterboy's "Universal Hall", and we danced to pagan songs. I have blacked out most of it, but for the beautiful ceremony, in which Adam and I stared at each other with glazed, crazed expressions of "I love you more than eternity, let's run off screaming." But oh, the love kept us sane enough.)

After Stephanie's wedding, Adam and I shall continue driving north, to New York, to east Long Island, to the Hamptons, to Sag Harbor. We will spent the entire week of Thanksgiving with my parents. During that week, my friends Charlotte and William will come by to check on the cats and the house. From Sag Harbor, Adam and I will leave on Saturday morning after Thanksgiving.
By that time, my mother and I may have driven each other crazy enough to say "I love you to death, now goodbye before I kill you. Mwah." Mom may be an atheist, but Jewish Mother is a powerful hereditary spirit. Her thing is food. My parents live organic with tiny meals and no sweets unless hand made. No bread unless organic. Vegetables from the garden every day. A perfect way to eat, truly. For them. That is fine, that is wonderful, that is not how I live permanently. My mother grills me on my food habits, my weight, my shape, my lifestyle, my sweet tooth, my spending, my wants versus my needs. Her way of control is to keep me in a tight life of maintenance. No wonder when I was a child I would sneak chocolate and candy. See, my mother and I are the Gilmore Girls. We are best friends. And best friends clash and drive each other mad. But I have always done that with her. Push and push back. I love her, we talk on the phone every day, but, well, what's to be done about a mother and adult daughter who know that the daughter is mentally a child and that the mother desperately wants to hover over? Rhetorical question, there.

Oh, why am I writing this? Do I need to vent something? I don't know. So much pain and fatigue and itching and heat these last few days. Heat and itching spreading across my head, ears, neck, face, chest. My friend Crystal gets the same thing as a part of her fibromyalgia. And so I sigh and take antihistamine pills and vitamins and anti-inflammatory supplements.

The cats. Oh, the cats have been marvelous. Watchful, loving, endlessly begging for hugs and brushing and treats and pure love. Rose is perched on the arm of the couch now, watching me, occasionally leaning in to nuzzle my cheek. I am waiting for my nail polish to dry. Sally Hansen Nailgrowth Miracle in Natural Sienna. A deep bronze brown with gold sheen. My new favorite next to Divine Wine, Radiant Rose, Perfect Plum, Wholesome Earth, Mighty Mauve.
And my nails are long, strong. I want to feel as strong.

There is no longer spasticity from the cerebral palsy thanks to the Ultram and Soma, but the fibromyalgia flare attack still lingers. Oh, well. I can work with that.

When Adam was in Las Vegas last week, he picked me up a beautiful fake diamond pin in the shape of an S-curved dragon. She has ruby eyes, a fake pink diamond in her mouth. I could not stop staring at her, grinning, giggling "Shiny" over and over, which pleased Adam. I keep her at my bedside. I have not named her yet. I may name her something that means 'luck' or 'power' or 'strength' or 'hope'.
brightrosefox: (Default)
Oh, Sag Harbor. It stays the same. Shops and eateries and stores may die, new shops and stores may take over. But the little village is always the same.
My parents are the same. They haven't aged a day. My relationship with my mother is surprisingly more healthy than ever now that we can each admit to and discuss our faults. We are still best friends, we are still Gilmore Girls. Less neurotic now, less picky. Also, my being on an antidepressant plus an anxiolytic really helps.
Adam and I have so far stuck to two Sag Harbor visit traditions: eating mussels in white wine garlic sauce at the Corner Bar, and shopping at the organic shop Provisions. We have yet to have pizza at Conca D'Oros, which will hopefully be better than last year's greasy mess.
As always, my husband and father are bonding over stone sculpting and art, and old movies. Mom is giving me her old outfits and jackets, and reminding me to buy jeans with longer hems. Always a fashion illustrator. Hearts.
Tomorrow, our Thanksgiving dinner will be held at the Bailey's for the first time since Adam and I have been coming to Sag Harbor twelve years ago.
Also, twelve years. Holy shit. Today, in fact, is our twelfth togetherness anniversary. It is also six months since our sixth wedding anniversary. Oh, time.
I'm eating one of Mom's brownies and drinking hazelnut milk. My mother's brownies are better than any brownie I have ever had, rich and dense and made so only one small piece is needed. I am also not just saying that because she is my mother. The brownies truly are amazing.
Twelve years. Six and a half years of marriage.
I will raise my brownie to that.
brightrosefox: (Default)
Oh, Sag Harbor. It stays the same. Shops and eateries and stores may die, new shops and stores may take over. But the little village is always the same.
My parents are the same. They haven't aged a day. My relationship with my mother is surprisingly more healthy than ever now that we can each admit to and discuss our faults. We are still best friends, we are still Gilmore Girls. Less neurotic now, less picky. Also, my being on an antidepressant plus an anxiolytic really helps.
Adam and I have so far stuck to two Sag Harbor visit traditions: eating mussels in white wine garlic sauce at the Corner Bar, and shopping at the organic shop Provisions. We have yet to have pizza at Conca D'Oros, which will hopefully be better than last year's greasy mess.
As always, my husband and father are bonding over stone sculpting and art, and old movies. Mom is giving me her old outfits and jackets, and reminding me to buy jeans with longer hems. Always a fashion illustrator. Hearts.
Tomorrow, our Thanksgiving dinner will be held at the Bailey's for the first time since Adam and I have been coming to Sag Harbor twelve years ago.
Also, twelve years. Holy shit. Today, in fact, is our twelfth togetherness anniversary. It is also six months since our sixth wedding anniversary. Oh, time.
I'm eating one of Mom's brownies and drinking hazelnut milk. My mother's brownies are better than any brownie I have ever had, rich and dense and made so only one small piece is needed. I am also not just saying that because she is my mother. The brownies truly are amazing.
Twelve years. Six and a half years of marriage.
I will raise my brownie to that.
brightrosefox: (Default)
Oh, Sag Harbor. It stays the same. Shops and eateries and stores may die, new shops and stores may take over. But the little village is always the same.
My parents are the same. They haven't aged a day. My relationship with my mother is surprisingly more healthy than ever now that we can each admit to and discuss our faults. We are still best friends, we are still Gilmore Girls. Less neurotic now, less picky. Also, my being on an antidepressant plus an anxiolytic really helps.
Adam and I have so far stuck to two Sag Harbor visit traditions: eating mussels in white wine garlic sauce at the Corner Bar, and shopping at the organic shop Provisions. We have yet to have pizza at Conca D'Oros, which will hopefully be better than last year's greasy mess.
As always, my husband and father are bonding over stone sculpting and art, and old movies. Mom is giving me her old outfits and jackets, and reminding me to buy jeans with longer hems. Always a fashion illustrator. Hearts.
Tomorrow, our Thanksgiving dinner will be held at the Bailey's for the first time since Adam and I have been coming to Sag Harbor twelve years ago.
Also, twelve years. Holy shit. Today, in fact, is our twelfth togetherness anniversary. It is also six months since our sixth wedding anniversary. Oh, time.
I'm eating one of Mom's brownies and drinking hazelnut milk. My mother's brownies are better than any brownie I have ever had, rich and dense and made so only one small piece is needed. I am also not just saying that because she is my mother. The brownies truly are amazing.
Twelve years. Six and a half years of marriage.
I will raise my brownie to that.
brightrosefox: (Default)
Oh, Sag Harbor. It stays the same. Shops and eateries and stores may die, new shops and stores may take over. But the little village is always the same.
My parents are the same. They haven't aged a day. My relationship with my mother is surprisingly more healthy than ever now that we can each admit to and discuss our faults. We are still best friends, we are still Gilmore Girls. Less neurotic now, less picky. Also, my being on an antidepressant plus an anxiolytic really helps.
Adam and I have so far stuck to two Sag Harbor visit traditions: eating mussels in white wine garlic sauce at the Corner Bar, and shopping at the organic shop Provisions. We have yet to have pizza at Conca D'Oros, which will hopefully be better than last year's greasy mess.
As always, my husband and father are bonding over stone sculpting and art, and old movies. Mom is giving me her old outfits and jackets, and reminding me to buy jeans with longer hems. Always a fashion illustrator. Hearts.
Tomorrow, our Thanksgiving dinner will be held at the Bailey's for the first time since Adam and I have been coming to Sag Harbor twelve years ago.
Also, twelve years. Holy shit. Today, in fact, is our twelfth togetherness anniversary. It is also six months since our sixth wedding anniversary. Oh, time.
I'm eating one of Mom's brownies and drinking hazelnut milk. My mother's brownies are better than any brownie I have ever had, rich and dense and made so only one small piece is needed. I am also not just saying that because she is my mother. The brownies truly are amazing.
Twelve years. Six and a half years of marriage.
I will raise my brownie to that.
brightrosefox: (Default)
I am in Sag Harbor.
Hi.
I will keep myself away from the internet for all but email, Livejournal, Facebook, and searching for answers to debates. This week is family time, and also walking merrily along the beach time, and also walking merrily through tiny Long Island towns time.
Also, Sag Harbor is as beautiful as it has always been, and the weather is lovely, and my parents are awesome, and the cat is awesome.

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