brightrosefox: (Default)
So. Multiple friends have suggested I write something like this, because no matter how often I say it, I still get invalidated, scolded, told I shouldn't be doing it because it upsets people. And of course, it would be talking about my life, my disabilities, my personal health, in public forums.

To paraprhase a friend: "...taking someone's lived experiences as they apply to their particular disability and how it expresses itself, and saying that they can't talk about that because it will make other people feel bad, is not okay and it invalidates them to varying degrees. Different disabilities affect different people in different ways."

In other words, sometimes comparing things is bad. We are human. Humans all have problems. Each human has their own set of problems. Some humans want to talk about their personal problems in ways that other humans find annoying, upsetting, unsettling - but other humans find those ways comforting, eye-opening, powerful.

I don't know how else to say it, so I'll be blunt, and this time I am not going to pull any punches:
Read more... )
brightrosefox: (Default)
Yes, obviously. Sheesh.

Friends have been sharing this back and forth into repetitive boredom, so I'll just add: Yes, this is obviously a strategy I've been implementing for a while in order to manage my mental illnesses, it is totally part of a very very specific personal therapeutic ritual that will take at least another couple of months to complete, and for Loki's sake, this stuff takes time, quit asking if I'm better yet. I've only been ritualizing for three years; most of this takes at least five. Plus, I can't just magically fix damaged neural pathways by thinking happy thoughts. Most people spend decades in therapy, while their acquaintances urge them to fix themselves faster. The frantic urging especially comes from people who've never even been in states of extreme anxiety, clinical depression, endless chronic pain, obsession, compulsion, memory disintegration, traumatic stress, dissociation, depersonalization, derealization. I often hold back from just punching walls. Therapeutic ritual and mindfulness in mental artistry takes time and a large amount of control. I've only been doing it since 2011. By 2015 something will at least be, as they say, Fixed. At least enough to allow other treatments to fall into place. Until I finish that intense ongoing ritual, I'll keep on battling where battles must be fought.
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.
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.



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.

(Nick Walker is awesome)
Autism as a neurocognitive variance. Indeed. It's a disability because it hinders how we interact with life all the time. But there is nothing wrong with us. It's just a rewiring of our brains before birth or at birth.
Like, with me. I was born a fetus. I was a 26-week-old fetus when I was "officially born". My developing brain didn't have time to pick and choose. It just grabbed whatever it could, crammed stuff in, got a random shiny new operating system that was able to work around all the dead white matter, and figured it was good enough because I still needed to finish growing into being a baby, you know? Like, "Fuck it, we'll deal with this brain damage later, just keep the body going, okay? Move it move it move it avoid the gaps in the dead parts, come over this way, this construction project is gonna take a few more months than planned, so we don't have time for sick days, guys. What's that OS? It looks kind of tangled. That's fine, it's shiny, build it in, hook it up, whatever. Hey! I told you guys to avoid the dead zones! Awww daaamn, somebody get a new team over there please? No workman's comp here, this is preterm, okay? Just go go go..."
And that's where I got my brain.
So, dear allistic and neuro-typical assholes who question my right to exist, who insist that kids like me are missing, stolen, lost, forever silent: Fuck off. My brain worked hard to be itself, and just because my OS isn't yours doesn't make me lesser.
brightrosefox: (Default)
I did not realize how weirdly difficult it can be to answer the question, "So, what triggered this C-PTSD episode and panic attack?"

I mean, how DO you explain all the fucked up, freaked out, screaming neuronal mess that can cause brief blackouts, episodes of time agnosia, obsessiveness bordering on mania, hyperventilation, emotional outbursts, etc etc etc.

And there is no one thing, two things, any things. That's why it's Complex PTSD. It can be anything and everything. Maybe it's because I read some news articles about police violence against disabled people with no legal consequence for the police. Maybe it's because a friend got triggered by their own things and during our conversation something triggered me completely innocently. Maybe it's because I had a nightmare about that time years ago when a skeevy dude tried to hurt and assault me near a shopping center and was beat up by another guy who just looked at me and said, "Run!" and I fled up the stairs until I couldn't breathe and never looked back. I don't know. I don't KNOW, guys.

You know? You know.

I have reasons for not talking about this stuff outside my psychologists and certain friends. Support is better than silence, though, and I have so much support and empathy to give, so when I need it I reach out to the friends who know.

Anyway. Yes, I took my meds. Yes, I did my exercises. Yes, I ate well enough.

And my cats have not let me out of their sight. (KITTIES)
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)

So, that's the link to all the photos they took during my MRI. You know, from here:

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

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


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

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

Quote on guarana:
""Guarana is one of those herbs that most people do not know much about, but should, because it is superior to plain old caffeine. The reason Guarana is superior to caffeine is for two reasons in my opinion. The first being that Guarana has more than just caffeine; it also contains two other stimulants in Theobromine and Theophylline. The second reason why Guarana is more effective is because it has different natural stimulants that seem to be released more slowly than regular caffeine so your energy levels seem not to spike and lull as much as regular caffeine. To add on to that, I will say that Guarana also contains Choline which is a powerful nootropic, as it increases mental function because it is a precursor to the vitally important brain chemical Acetylcholine. I enjoy Guarana because it really is an effective herbal Adderall replacement supplement.""

Stuff from Facebook:

I am starting to forget what it's like to have physical energy, like basic adrenaline and muscle strength. It comes and goes. I miss dancing and laughing. Maybe I can do it soon.

Okay. Okay.
It's fine; it's just a lost plushie owl. I'll find it eventually
For now, I can not focus on the bigger owl. I have a tiny owl, and I have that gigantic carnival owl. I also have the snow leopard, the massive carnival husky bigger than my cats, the Ponies, and the awesome Spherical Plushie Bunny. But I am still going to find that white and gray owl. It is so fluffy. You guys. It is so fluffy.

How funny. I looked in my bathroom mirror and wondered which foundation makeup I had applied. I realized I hadn't applied any makeup at all. It was a slightly alien feeling...
Those memes going around explaining "Why I Wear Makeup" and "Why I Don't Wear Makeup" are absolutely beautiful just to me. You know. Do not tell me I don't need makeup all the time. You are not me. I am not you. We can't obviously instruct each other's cosmetic preferences without consequence regardless. I personally need base concealer. Maybe you don't. We are both pretty.
It began with a severe anxiety-driven fear that my skin was covered in destructive blemished. It isn't ending. But it has traveled along a road that has begun healing.
Good enough, for now.

Still full of muscle exhaustion beyond muscle exhaustion. Still in muscle pain beyond muscle pain. However, the rest of the vitamin boosted coffee has kicked it, the moisturizers made my skin feel much more awesome, and the plain cake doughnut I just ate was delicious.
Besides, I have several couches and a bed to collapse on.
brightrosefox: (Default)
So, I found this on my friends list. For shits and giggles, I went through the whole thing.
I'm at 99 percent. The only one I paused at was 13 under Section I: "The middle spectrum of outcomes, events, and emotions is sometimes overlooked or misunderstood. (All or nothing mentality)." I've always seen everything in shades of gray... however, a strong part of me often wants to skew white or black on some things. Examples: Legal abortion choice, gun ownership choice. I am extremely for both without compromise. Which often puzzles many partisan people.

Also, this.
Dude. Dude.
So, I just got off the phone with the office for one of Maryland's delegate candidates. After listening to an assistant explain the candidate's policies and issues supported, I said I had more questions... and so she put the candidate herself on the line. I explained about my disabilities and asked how she would support accessible transport on the county. She was enthusiastic about that. She had been supporting it for years, she said. And then I pulled out the big guns: I told her I was autistic and I wanted to know if and how she would support advocacy for autistic adults. And she made me happy. She worked with autistic teens and young adults, she said, and believes that autistics have powerful voices, beautiful minds, and must not be shut out or neglected. I explained how we don't have much of a voice, and she said that she was "absolutely willing" to help with advocacy, and she fully agreed that since autistic kids grow into autistic adults, their voices are incredibly important. We thanked each other. And she made an offer for me to visit her in Annapolis to discuss opportunities for Montgomery County and how to help autism self advocacy, as well as accessibility for all disabled people. I have never talked to a political candidate like this before. I was stunned by what came out of my mouth. She was so excited. It was incredible. I told her I would vote for her.
You guys, what did I just do? Did I really just pour my heart out to a candidate for our state's House Of Delegates who actually listened to and supported me? I'm physically shaking right now.

I am not becoming. I am peeling away layers to un-become everything I am not so I can be who I was meant to be in the first place. -paraphrased from unknown online quote.
brightrosefox: (Default)
what is your salad dressing of choice? Olive Oil and Red Wine Vinegar.

what is your favourite sit-down restaurant? Any sushi restaurant.

what food could you eat for two weeks straight and not get sick of? Salmon Avocado Sushi.

what are your pizza toppings of choice? Fresh Mozzarella, Mushrooms, Black Olives.

what do you like to put on your toast? Fruit Preserves - Strawberry, Blueberry, Raspberry, Acai, Pomegranate.

how many televisions are in your house? Two.

what colour mobile phone do you have? Red.

are you right-handed or left-handed? Right-handed.

have you ever had anything removed from your body? Nope.

what is the last heavy item you lifted? A twenty-pound jug of cat litter.

have you ever been knocked unconscious? Yup.

if it were possible, would you want to know the day you were going to die? Yes.

if you could change your name, what would you change it to? Amara Julianne.

what’s your goal for the year? Finish at least one novel and stay out of hospitals.

last person you talked to? Husband, Adam.

last person you hugged? Husband, Adam.

favourite season? Summer. Late Spring To Early summer.

favourite holiday? Summer Solstice, Samhain, Winter Solstice.

favourite day of the week? Monday.

favourite month? May.

what's the last film you saw? Pacific Rim, again.

do you smile often? Always.

do you always answer your phone? Yes, unless the caller is unknown or an obvious telemarketer.

it's four in the morning and you get a text message, who is it? Husband on an out of state job, or a friend needing to talk.

if you could change your eye colour, what would it be? Hazel.

what drink do you get at mcdonalds? Apple Juice.

have you ever had a pet fish? All my life. Still do. Cichlids.

favourite christmas song? Carol Of The Bells, via Trans-Siberian Orchestra.

what's on your wish list for your birthday? Various skin care items, organic shop gift cards, and bookstore gift cards.

can you do push-ups? Yes.

can you do a chin-up? Slowly.

does the future make you more nervous or excited? Nervous.

do you have any saved texts? No.

ever been in a car wreck? Yes, but not damaging.

do you have an accent? Occasionally my born Brooklyn accent.

what is the last song to make you cry? "Breathe Me" by Sia.

plans tonight? Watching cartoons with husband, Adam.

have you ever felt like you hit rock bottom? Not yet.

name three things you bought yesterday: Tara Walker's Dream Brand Night Creme. Michio Kaku's 'The Future Of The Mind". Vitacost brand DLPA and L-Tyrosine.

have you ever been given roses? Yes.

current hate right now? When someone deliberately pushes their own beliefs about medical treatments.

met someone who changed your life? Yes, several: Husband, best friend, several friends made online.

how did you bring in the new year? Very quietly and gently.

what song represents you? Currently: "Queen Of My Heart" by New Model Army; "Ballad Of Bodman Pil" by New Model Arny; "The Whole Of The Moon" by Mike Scott And The Waterboys; "The Return Of Pan" by Mike Scott And The Waterboys; "Trip The Darkness" by Lacuna Coil; "Blank Infinity" by Epica; "Storm The Sorrow" by Epica.

name three people who might complete this? Dunno.

what were you doing at midnight last night? Struggling to fall asleep.

what was the first thing you thought of when you woke up? The pain in my hips.
brightrosefox: (Default)
So, I had what I considered a palsy victory and agony simultaneously.

Depressive episode gripping me hard enough to draw blood, I walked out - no cane, because medicine and meditative stretchy exercise like whoa - and took the Metro to Twinbrook, walked the ten minutes to Congressional Plaza, shopped, stopped to eat sushi, and carried two bags back to the Metro, right side burning and feeling ripped open while palsy left side felt ghost-like and nearly numb. Got to Shady Grove again, took the bus and stopped at the Redmill Center right near my house community, went to the CVS and bought drug refills, limped and shook and spasmed and gasped as the bus dropped me off across from my townhouse community, walked with three bags that felt like dead weights, stopped to get the mail, went home, went upstairs, collapsed, and very weakly, feebly flailed and flapped and cried out "Yay, I did it, go me!"

I got myself belated birthday gifts, especially because the Rockville Ulta now carries
It Cosmetics, which is my top favorite makeup brand in the world, which I just learned today so it was like a cliche of angels singing. I'd been waiting for my Ulta to acquire It Cosmetics since last year, when the Silver Spring Ulta announced they had the brand and that Rockville would get it this spring. YES. I was also flush with coupons and points so I splurged: I got the new liquid peptide foundation and the new thin-brush peptide mascara; and also Ecotools brand konjac facial cleansing sponge made of konjac fibers, because konjac is one of the most awesome internal and external cleansing fibers in the world.

I was in horrid pain, honestly awful bad bad pain, pain that was like trauma pain... and I was happy. Because PAIN pushed me on. And VICTORY. It was nearly joy. And joy is something above emotion, after all.

I knew that my cane might have made my hands more full. But the fact that I was capable of doing all this without a cane... it was just... well, you know. Hemiplegic spastic ataxic cerebral palsy, spastic hypertonia, fibromyalgia, osteoarthritis, sciatica, lordosis, migraine pain, major depressive episode, autistic symptoms making everything loud and bright and I could barely look in people's eyes despite cheerful conversations. I did STUFF. I did stuff that made me feel good. I will be in pain for days. But I did it! I think the agony will be worth it, the codeine and the tramadol and the baclofen and the clonazepam and the capsule supplemets of devil's claw and MSM and cayenne and mangosteen and noni vinpocetine and oh my gods I can hardly walk and I am shaking all over and my muscles feel torn up and I want to break down in tears.
But I am proud of myself?
*wipes away tears*

Damn, I really hurt...

...and I forgot to buy milk.
It's okay. I have enough coconut cream, coconut milk, and sweetened condensed milk to work with my coffee until I can get to Giant. Plus a hand mixer blender device to whip it good. At Giant I can grab a lightweight jug of kitty litter and a half-gallon of whole milk, and canned cat food. I can bring a backpack plus a tote to see what will fit how, so I can take the cane.
I'm twitching so much. I wonder if this entire day was one big seizure trigger. Fuck.

Now, today, the day after, I am slowly preparing for my first meet and greet appointment with the new psychologist. My last one got too expensive after I switched to Medicare, and this new woman will work on a sliding scale, with my mother willing to help.
brightrosefox: (Default)
Did you know that for eyeglasses, Rose photochromatic tint helps reduce glare, eyestrain, headaches, and migraines, and helps enhance and sharpen contrast and is good for outdoor activities like hunting and fishing and stuff that calls for a detailed eye? It's like this tint was made for me. My frames are 410319 in Pink. They're small and oval and child-sized, and they fit me perfectly without being too small.

I swear this is totally not a shill or something. I just think that if I'm going to buy eyeglasses online, this is the best place. The frames are made extremely well, the prescription lenses always come out perfectly, the photochromatic tints work wonderfully, all the pricing for everything is awesome, and I save well over half the money I might spend in a store. Shipping takes just over the length of time it takes to wait for new glasses from a store. I am pleased.
brightrosefox: (Default)
I'm turning 35 tomorrow. 11:58 PM. Which means I tend to extend the celebration into April 7th, since it was so close to midnight and they were busy keeping me alive with the "extreme pre-term" deal.
35, huh? Well.
You know what? I don't even know if it matters. I'm still short, nobody thinks I'm even 30, I barely feel thirty-anything. Maybe that will change the more I approach 40, but right now, it's whatever. However, I will be eternally thankful I started all that skin care stuff when I did. My skin still looks good - despite body dysmorphia insisting that I am covered in ugly blemishes. My profile photos all have me with full makeup, but my brain still sees the grossness beneath. Literally no matter what people tell me. *sighing*

I'm watching "Too Cute: Kittens" right now, before I sleep. Turkish Van, European Burmese, Persians. Eeep, they are darling; especially the Turkish Van babies. They all are white with black giant dots on their backs and heads. Like cow cats - hey, like Luna. I think Luna is actually watching, from her spot on the back of the couch. Every time a wee kitten cries, she looks up and stares at the television.

I've gotten offers from Facebook friends to buy me birthday gifts, which is awesomely sweet. I gave forth links to Etsy products, and I was still like, "For real? You are serious in wanting to buy these for me? Dude." They say they will be late and apologized, and I was like, whatever, I don't care; even if I ordered them myself it would be very belated. I never expect these things.

Calliope has been sweet even in fierce play. This kitten constantly amazes me. She is insanely mellow and tolerant and unfazed by very few things. I have kissed all her paws and her nose and her belly and she just purred at me. Well, then.

I have a baby migraine. I just threw codeine and baclofen and MSM at it.
brightrosefox: (Default)
Stuff I haven't really talked about lately:

1. Crooked Cerebral Palsy Compensated Fake Yoga, aka Modified Zen Meditation Stretching, for ten minutes, because what my body attempts to do is not any kind of traditional yoga, although it is hilarious and laughing at myself is good. (Which is also why I rarely discuss it - half my friends list is full of actual yoga enthusiasts who practice actual modern yoga. And since I don't believe yoga actually truly cures anything, let alone cures me, I stay quiet. It's like medical cannabis. If people would stop saying it's a panacea for every illness ever, I'll talk about it.)

2. Allergies. Soreness. Stiffness. Burninating. Did I say that loudly enough? And, naturally, fibromyalgia means everything GOES TO ELEVEN. And oh, yes, that's a thing. I've started feeling embarrassed about the word Fibromyalgia, since so many people associate it with whining and inability to "slap a band-aid on it and walk it off weakling" so I've started just calling it Myalgia, which is literally what it says on my neurologist's paperwork. Like, when she sent me for bloodwork, the paperwork said that my active illnesses included Intractable Epilepsy; Insomnia Not Otherwise Specified; and Moderate To Severe Myalgia, Connective Tissues. Apparently there are other paperworks that list not only the Cerebral Palsy, but the Periventricular Leukomalacia, the Autism Spectrum Disorder, the ADHD-Inattentive, the Clinical Major Depressive Disorder, the Multiple Anxiety Disorders, the Social Phobia, even the Tokophobia. Plus, there's a note saying that the Myalgia is causing gradual destruction of gray matter, except in medicalese. My neurologist and my pain management doctor are genuinely stunned and impressed that I'm living quite well on the "small doses of drugs that rarely need changing." I've been called Fascinating and Fun To Work With (I make doctor laugh a lot).

3. Dietary Stuff. I have cheerfully denied everyone throwing fad diets at me, even if they feel that those fad diets might actually be real illnesses and food allergies. The only food components that bother me are large amounts of pure soy and kiwi fruit. Plus, I just plain don't like corn or maize. Going gluten-free did nothing, I adore dairy, I crave red meat, and bread is good. And I dislike kale. I love seaweed.

4. Pharmaceutical drugs, dietary supplements holistic treatments. They are all saving my life, and everything is both poison and magic. Shut up.

5. Lifestyles. I like my solitude. After watching MLP's "Maude Pie" I have concluded that I have Maude moments as much as I have Pinkie moments, in my head, and my Fluttershy moments and Twilight moments are balanced. My friends by now understand that I'm good at switching back and forth quickly. Currently, I am both Maude and Fluttershy. Deadpan and flat affect, shy and soft, desperate to keep the peace and remain stable.

And now, I shall write a thousand poems about rocks.

Seriously. Maude. This is a stand alone episode, so anyone who has missed the new season will be able to watch.
brightrosefox: (Default)
So, anyway.
Fucking migraines. Fucking snow. Fucking weather.

Beyond that, things have been very well. I've been actively activisming and self advocating, for both autism and cerebral palsy. March 1 is a day to mourn for those autistics and other disabled people murdered by caregivers. I lit candles.

Disorder: abnormal condition affecting the body of an organism.
And I'm fine with that. I don't want any cures. I'm okay being abnormal. You can stop wanting to cure me. I've been mitigating the most disruptive symptoms for a while on my own. Thank you, but I don't need your remedy pushing. What I do need is your support, your love, your compassion, your understanding.
One more thing: I do see my autism as a disorder, with disruptive symptoms and wonderful benefits. It shows me the universe in ways that I don't think I could perceive any other way. And it certainly can be irritating, affecting my abilities of communication, concentration, conception, perception, perspicacity, pensiveness. It makes me twitch, it makes me unable to brain properly. But I also don't want to get rid of it. It is part of my brain. It is part of me. If you want to destroy it, you want to destroy me. I'm not okay with that at all. Treat me, ease me, soothe me. But don't wish to damage me.

Recently, I learned that Lindt/Lindor chocolate supports Autism Speaks, which saddens me deeply. I won't spend money on Lindt anymore, but if someone gifts some to me, I won't say no. I will not and cannot support Autism Speaks, who are indeed evil, abusive to autistics, and do not actually spend their funds on helping autistic people. Luckily, Ghiradelli is still awesome. And Green And Black's. And Dagoba. And Trader Joe's.

My pain management doctor and nurse have been "extremely impressed" that I am still on "the lowest doses of tramadol and codeine out of all the patients" in their treatment program. My mother is finally convinced that I'm not damaging my organs. The nurse was very surprised when I told her I didn't take codeine every day as prescribed. But since I do need the tramadol daily, see increased the dosage from 50 mg to 100 mg twice a day, since neither Medicare nor Aetna will cover a time-released 100 mg version of tramadol. This, along with 20 mg baclofen twice daily, has been ideal, with the codeine taken once weekly, plus more as needed when migraines become troublesome. Also, high doses of magnesium and pure omega-3 fatty acids. High therapeutic doses of EPA and DHA have been keeping the worst of the ADHD-Inattentive and OCD under control, as much as Strattera used to, which amazes me. Calamari and Krill oils have been really helping.

Adam and I visited the official Mayorga Coffee warehouse in Rockville again now that we need more coffee. The warehouse sells coffee for cheap, and always have a sale: two 2-lb bags plus a free 12-oz bag for $50, which is a steal. We do this every few months, since five pounds of coffee for fifty dollars lasts us anywhere from three to six months. This time we got a bag of organic Peru, a bagof organic Honduras, and free organic black and tan. All with notes of chocolate. *nod*

The cats are well. Calliope has settled into the family beautifully, and has become fast friends with Jupiter. Even Luna has become friendly with her. I'm really pleased. She loves having her belly and chest scritched. She loves cuddling against me. She is gentle even in rough play. She is slowly learning to love being picked up and cuddled by Adam and others beyond me.
I'm still having nightmares about Rose dying slowly in my arms. I imagine they will fade eventually.
brightrosefox: (Default)
2013. Stuff happened. The only reasons I remember are Livejournal and Facebook. No, really.
Highlights? In no order, due to disintegrating memory.
1. Getting Medicare. So, hey, if you are given a a helpful advantage, use it.
2. Autism! Nobody was surprised. Finally things clicked into place re: my brains. I actually like putting names and labels to medical diagnoses. This was like relief.
3. I wrote a lot of stories and got a lot of rejections. I collected those letters in a folder.
4. I became, officially, a disability activist, advocate, and outspoken cripple. I became an advocate for the use of pharmaceutical drugs as needed for different people, which led to so much snark. I became skilled in the art of snark.
5. Re: above. I joined a support group for Cerebral Palsy. Best decision of the year. I met so many amazing people who became my good good friends. And I learned about many factual scientific medical things, like cerebral palsy and aging.
6. I started talking about the things I learned, to spread knowledge, and was smacked down hard. Nobody cared and also people told me I needed to stop talking. This just increased my resolve to keep talking. That's the type of person I am. "Stop doing that! It annoys me!" "Okay, I'll stop." *pause* "FYI, I'm still talking about it, but you don't need to know. Ha ha."
7. The Year Of Chronic Pain Flares. Maybe it was just one massive flare all year.
8. My cat died. My beloved beautiful cat Rose. She died of congestive heart failure. She was only five years old. I have dreams about the twenty-four hours watching her gasp for breath and not knowing what to do because I wanted to wait until Adam came home to take her to the emergency vet hospital. She was so critical that she coded immediately and died instantly. And all the doctors had to convince me that no matter what, I did the right thing. She was dying. She was dying of congestive heart failure and we never knew why. It ripped a burning hole in me so deep and so intense that I was swallowed by emptiness.
9. Two days later, Adam and I casually checked out the humane society. I wound up being chosen by a year-old female brown tabby with Egyptian Mau mix. I had to take her. She needed me. She held my hand.
Some might call it too soon, but this had nothing to do with replacing Rose. Calliope is not a not-Rose cat. Calliope is Calliope. We are bonded hard.
10. My physical health declined. I learned why and how it was connected to cerebral palsy. People told me I was thinking too much about it and that my "negativity" was making it worse. I hate that book, "The Secret." I am going to activist their faces off in 2014.
11. I read so many SF/F books. It was beautiful. Supernatural. Paranormal. Yes.
12. My varied colorful canes went everywhere with me, because my muscles were too spastic.
13. People have attempted to steer me away from my pharmacy drugs completely. I kept reminding them of my history re: pharmaceutical vs holistic. It is a balance now. Shut up. Leave me alone. I will still talk. Maybe you will learn?
14. My favorite supplement is still MSM. And various plants, herbs, and antioxidant food extracts.


brightrosefox: (Default)

December 2014

 1234 56
7 891011 1213
14 15161718 1920


RSS Atom

Most Popular Tags

Style Credit

Expand Cut Tags

No cut tags
Page generated Sep. 23rd, 2017 07:34 am
Powered by Dreamwidth Studios