The Return To Innocence

Um. So.
Last night I had a small seizure - awake but barely conscious. And the baby migraine kept pulsating. I forced myself to sleep. I woke up at noon with the migraine even worse. And the thunder rolled.

The seizure itself was pitch black. It had me moving through a completely moon-less woods, holding the hands of two people - Alicia and Ananta - and stumbling over things, which transferred agony into my skull. I was shaking. They kept saying, Just a little more, just ahead, it's a rose light, you'll recognize it...
And there it was like a rosy mist with light inside. At the last minute, Ananta picked me up and carried me directly into the mist. That is all I remember.

I wound up staying in bed for an hour, because Calliope kept vocalizing, nuzzling and bunting me, and settling in to nurse on my shirt. I know she loves me deeply, but I must ask the cat behaviorists here what it means to be truly, actually loved by your cat, because Calliope will not go to bed until I go to bed, Calliope will follow me around the house, Calliope will check on me just to make sure I exist.

After I fell out of bed and took my medications (baclofen, tramadol, codeine, coffee, omega-3, MSM, L-Tyrosine, probiotics, inositol, shilajit, ashwagandha, noni, mangosteen, devil's claw, magnesium oil massaged into the severe stiff burning screaming lower back).

I am not fooled. I may be upright, typing. But I am having moments in which I need to breathe, collapse in the chair and massage my head. This will be a very interesting afternoon. Luckily, I have DVRed Archer, Bitten, Being Human, Lost Girl, etc. Just in case.
Is it sad that I want Ray and Lana to be my nursemaids?

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.
https://www.swansonvitamins.com/swanson-efas-maximum-strength-krill-oil-1000-mg-30-sgels
https://www.swansonvitamins.com/swanson-efas-super-dha-500-from-calamari-30-sgels
https://www.swansonvitamins.com/jarrow-formulas-inc-epa-dha-balance-odorless-240-sgels

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.

Thanks to another trip to Michael's craft store, I have a new set of Faber-Castle Pitt artist pens below Fine, and Calliope has a Beanie Boo dolphin to cuddle, which she has been doing. I have an owl, which seems to work well as a knee pillow.

We went to the nearby Whole Foods as well, where I found my loved chocolate hemp milk, Guayaki Yerba Mate energy shots in Lime Tangerine, Orgain Chocolate Nutrient Shakes, a bottle of Acai+10 Superblend with Seabuckthorn and Mangosteen, and the rare Badger Balm large Lime lip balm. Adam picked up some fabulous cheeses, and a Coffeeholic Cream Cake for me.

Mom called to chat about an NPR medical science podcast about migraines and the placebo effect, and I revealed that forty percent of my smaller headaches can be slightly reduced by intense meditation after taking certain supplement pills. Good talk. Doesn't work all the time, doesn't work for the more intense symptoms, but I know how powerful placebo effects can be for mild and minor pains sometimes.

Luna and Calliope seem to be starting a... well, a tolerance, on Luna's side. As long as I give Luna attention first, she is nice to Calliope during cooperative play, feeding, brushing, etc. As long as Luna Moon knows she is still the precious queen and Calliope Io is submissive, there is peace. And Jupiter has been gently playing with Calliope, with the occasional soft bap on the head. I am pleased overall.

So, while at Whole Foods, I was limping down an aisle with my blue aluminum cane, right behind a tall man who had the same cane, in sparkly black, and we smiled at each other. "So, how are you?" he asked. I said, "Oh, well, the back pain and sciatica are acting up. How about you?" "Yeah, I'm going to need hip replacement and knee replacement soon," he said. "Oh, ouch," I winced. "I can't imagine. I mean, I'm 34, I was born with cerebral palsy, I'm still learning how to use this," holding up my cane. He nodded. "Yeah, my whole left side has been crazy for years." "Oh, mine too! I have spastic hemiplega on the left! The chronic pain has been getting worse for a long time, but I don't need surgery. Yet!" We grinned at each other. He looked around forty or so and over six feet. I could see right away that his joints were bothering him. "Well," he said, "You look absolutely lovely!" I smiled widely and said, "Thank you! You too!" He grinned back and thanked me, then said, "I hope the pain reduces as much as it can." And I said, "Same for you. Good luck with the surgeries." We said our goodbyes and hobbled off. It was as though we had been friends who hadn't seen each other in a while, commiserating in that cripple language that stays away from "Feel better" and steers toward "I hope your symptoms ease up" which, well, we all understand in the chronic pain community.

And that got me thinking. People tell me "You look beautiful/lovely/great" and of course the silent "even though you're in pain" follow-up. And I actually honestly don't mind that at all. It isn't an insult to me. I know they're usually talking about my chronic pain specifically, not my disabilities as a whole. It's an unspoken thing - "You're chipper and glowing and not letting the pain show, rock on with your badass self." I know that so many cripples would see it as a back-handed compliment and insult, because it totally can be. But for me... I guess it lifts my spirits, especially and specifically when a fellow cripple says it and even able-bodied people who may have invisible illnesses. It is something I need to hear from other disabled folks, because even when I think I look hideous and shitty, to hear someone tell me I look great despite my pain makes me happy, which in turn makes me feel psychologically and psychically better, which helps me try to combat the symptoms, etcetera.

So, my fellow chronically ill and disabled folks, how do you react to such a comment? Is it an insult or backhand compliment for you? Is it a lovely compliment? Do you view it differently when it is said by other chronically sick and disabled people as opposed to able-bodied people?

Well, hello, 2014. It's not your fault that I have been feeling like fresh hell since, oh, December 31st. It's just how it is.
We have snow, ice, and cold. I got legitimately and honestly mocked by someone from Minnesota who called me a *ahem* "pussy whiner* for mentioning that any temperature below 20 F damaged me severely physically. I wrote a scathing note back which shut her the hell up, and I invited her to come down during the height of summer, upon which she exclaimed "but I'll burn up!" and to which I replied, "Oh, sweetie... it's not even that hot!" aand the conversation was over. I posted my feelings on Facebook, to which I got several agreements.

*Dear people used to cold climates who are seriously, non-jokingly, honestly, deliberately laughing at, judging, and mocking people used to warm climates:

Okay, look. I know, we're whining and complaining because our freezing is your Tuesday. Okay, maybe we should just suck it up and wear more layers. But you know what? After living in this sort of climate for a very long time, something happens to our bodies and our blood. Just like you. That is why a hideous drop in temperature makes us rise up and scream, or, what you call whining, while for you it's just another snowy happy day across the killer ice. Because your biology has grown so accustomed to your climate and your weather, you may be literally unable to now understand how difficult and painful it can get when one minute it is just under forty degrees Fahrenheit and a few hours later it is just under ten. It is an actual, physiological, biological shock to our systems. And for those of us living with chronic illness, disabilities, and disorders that get worse when the cold comes, it can be viciously, horrifyingly painful in ways you may be unable to realize. I don't blame you for calling us whiners and pussies. In fact, I'm gonna pat you on the heads and smile and say, "Okay, sweetie..." in a soft voice. Because that is all I can do right now to keep my frozen fingers from smacking you. I'm sure you would do the same for me if you came over during a light heat wave, which we call Thursday, and start complaining that you were burning up possibly to death, and I laughed at you and said "Oh sweetie, it's not even that hot!". And then I would just smile and hand you a cup of ice water.
So. When I say my joints are exploding with fiery pain drawn from the most intense magma, that my muscles are locked in howling agony as a sensation of pure horrific icy cold runs through them, that my nerves and blood vessels actually begin to scream if I step foot outside in less than twenty degrees F no matter what I am wearing, then I really fucking mean it with no hyperbole. And so I will ask you in a quiet, raspy voice to not ever tease me again about how cold I think it is here in central Maryland. Because pain is pain is pain. And I can still stab you with an ice pick and that will still be pain.
Smiley face!*

I am still in that pain, sooo... mmhmm. I've put on plenty of sweaters, too. I mean, joking is fine. But seriously making fun of my pain issues in cold weather is never a good idea.

Also, I wonder how I can still have allergy issues when it is this cold. Wait. No, I don't. *bites lip, facepalms* Carry on.

Life is well enough. Adam made dough, and then made cinnamon rolls, and then made icing out of powdered sugar and labneh, which is a form of liquid kefir strained yogurt from the Middle East. Probiotics and whatnot. Adds a fantastic tart tang. H-Mart is a wonderful multi-country grocery store.

I have been sleeping too intensely, or rather dreaming too intensely. It's caused me to sleep too hard. But those dreams, oh, they are creative and inventive as hell. My brain really needs to stop playing fanfic with the TV series 'Lost Girl'. I've been reading detailed recaps of season four, via Canadian blogs, since that season only begins here this month, whereas Canada is around eight episodes in. I guess I do prefer spoilers, sweetie.

Seizure. I yowled OH FUCK three times and grabbed the arms of my leather task chair and I felt my head fall back and my whole body spasmed and my eyes closed and
I was running so fast through the forest following Alicia; her long long blonde hair streaming, and she was shouting, and there was such a bright light, a portal like before, and Alicia was yelling, and she reached behind and grabbed my right hand (left hand was hanging with spasticity) and told me Only a few more yards I promise you'll be fine, and we were in the portal of light before I knew it. On the other side, Serena and Amara had their arms open, and Serena grabbed me and held me tightly, and the warm tranquility of her power washed over me. Amara put her hands on my head and murmured something, like a spell or incantation, and I felt so relaxed my muscles fell loose and I almost stumbled. Serena asked me, Do you want to lie on the bed with Koan? I said, Yes please. The two women supported me and led me to Serena's mansion, to her guest room, my room. The calico kitten was curled on on a pillow, but she woke up mewing and trilling, paced the pillow, and when I was settled, she carefully crawled onto my chest and assumed the meatloaf position and purred loudly and nuzzled my face. Amara put her hands against my cheeks and murmured Oh sweetie, I will take care of the neurons and synapses, you relax. And I started crying, just a little, and I whispered, I love you, I love how I made you all up, thank you for being in my brain. And I closed my eyes
In the real world, I came to, gasping and whimpering, my hands clenched spastically against the arms of the chair. I had to write this. 7:33 to 7:35. I am wildly energetic in my postictal state. The migraine is worse now. I've taken medicine. I'll be fine. I just had to write it down.
Adam is on his way home from work. He called, and he knew right away that I was not braining well. I love him.
Rose had jumped on my lap immediately, and nuzzled my face, and purred and purred.

Skull and neck paims beyond belief, augh.
Caffeine and MSM and Yerba Mate and Moringa and Mangosteen and Noni and Soma and Klonopin and stretching and exercise and even MIPCCY - Yes. I think I too much Ultram yesterday by pure accident of brain fog, so no more for a few days. But the rest of it, yes. I will be okay.
I'm getting there.

You guys, I amaze myself. I've been writing helter skelter all over the place: Novel, stories, novellas, blogs, facebook, notebooks with various pens, everywhere... in the middle of a postictal migraine and insanely horrific agonizing chronic pain flare-up following recovery from a panic attack. If I didn't have a computer or paper I might write on the walls. I hurt so badly I have no idea what I'm doing. I feel half fire and half water. Wild and raging, and all I want is a crackling bonfire and a rushing river.
I doctored up a photo of myself and it came out half gold light and half blue light. It looks inhuman. But part of me adores it so much. My face is two different parts. I am two entities in one. When I burn, I am cool. When I am cool, I burn. It is ying yang, dragon phoenix, up and down, left and right, I don't even know. I don't speak out loud except to my cats, I just speak through Story. So much Story inside me.
That rock. That rock that my husband gave me, the rock that he held while standing in Room 217 of the Stanley Hotel, in which Stephen King wrote "The Stand" and used as an inspiration for "The Shining". That rock is still next to my laptop. I am covered in words. I am filled up with Words. I may disappear into Story. I may not even see the world until I have to.
Is this what it is like to live in the land of the Fae and then come back to the land of humans?



Maybe it was the super moon. Maybe it is the heat from the sun now. Maybe it is anything.

So, until I see a full end to these violent migraines, brain pains, and flares of fibromyalgia, sciatica, chondromalacia patella, knee arthritis, ulnar nerve entrapment, hypertonia spasticity with hemiparesis, hemiparetic ghost sensations, itching, shaking, hay fever, exhaustion, true muscle weakness, and hypersensitivity... I will be pretending like all hell to be a normal ordinary human. Nothing to see here, nope, move along...

What with husband working a computer trade show job in Manhattan for the next couple of days, my sweet Charlotte will be coming over every day to help me work on organizing the rest of the house. Gods know I will need such help.

Also, I have a plush red fox and a plush gray wolf to cuddle, and my darling Serenity the Pony to whisper to, kiss on the lotus bud blaze mark on her forehead, brush her long long hair with a boar brush and wood comb.

And naturally, there is my wonderful balance of pharmaceutical pills and supplement pills.
Klonopin, Codeine, Ultram, Soma. Ashwagandha, MSM, Yerba Mate, Devil's Claw, Raspberry Ketones, Mangosteen, Moringa, Goji.

Okay. Migraine, seizure, pain, yada. The seizure was hard, fast, very intense, and deeply trippy. It teamed up with the cerebral palsy to make my entire body spasm and drop to the floor in a crouch, like a running crouch, maybe? My brain was moving too quickly. I began arguing with it. I tried to yell at my muscles to move, but spastic hemiplegia had set in, and my right side had gotten involved with it, and for a few minutes I literally could not move. For a few seconds I was not breathing. Even after I started breathing again, I could feel saliva pooling in my mouth that I couldn't swallow. Stupid stupid brain. When my brain released my and I stood up, the whole room twisted melted, and spun. Damn brains.

So, earlier, I was browsing on a random celebrity gossip site. You know that hip-hop singer guy Chris Brown? I've heard some of his music, but he's more famous for beating up another hip-hop singer, Rihanna, who he was dating, and he beat up her face so badly that it was horrifying. So, I saw a photo of this guy, and he has a tattoo of a woman's beaten, battered, stitched face on his neck. On his neck. A tattoo of a battered woman on his fucking neck. And here I thought douchebaggery in general couldn't get much higher. Isn't he that guy who apologized over and over and then she took him back and they fell in love again? Is that her face tattooed on her neck? Her stitched up, bloody, bruised, beaten face? Which he caused? WHAT IS WRONG WITH PEOPLE? I don't want to live on this planet anymore. Oh my gods what.
(I don't listen to hip hop. I have been told there is so much misogyny, rape apology, prejudice, homophobia, and ugly creepy statements about every group of people that it just isn't worth it. But apparently, there is an openly gay hip hop singer? Frank Ocean? I've listened to his songs. I do like his voice. Can we get rid of Kanye West? His ego has its own ego. And he got Kim Kardashian pregnant. I bet he wants to name the kid Jesus Christ with a K. I hate people.)

Today was spent on the phone with contractors for home repair. One guy came over and took measurements. Another guy will arrive on Wednesday. Tomorrow, I see the pain specialist. Thursday is... something. I don't know. Cleaning out the giant monster breakfront cabinet that holds the main library, probably. We will need many friends to help us move furniture and clear off the kitchen food shelves and move things, so that when the repair people finally arrive, they can do their jobs with ease.

Adam got me a Kindle with his credit card's reward points. An actual physical Kindle. Which means it will be a shared Kindle. He can take it with him on jobs so he can read several books after another. I have my PC and phone Kindle, but an actual Kindle will be lovely too.

I have been writing. Much fiction writing. My hands hurt.

In agreement with another disabled friend's rant about "disability inspiration porn" (dear gods, that is actually a thing, and I want to cry).

First, I'm going to quote the entire rant because it is worth quoting.
( Read more... )

And my own reply with rant:

THANK YOU. FUCK YES.

Also, that poster with the skating guy and the little girl where they both have amputated legs and are skating on... what are those? Converted hockey sticks? And it says "The Only Disability In Life Is A Bad Attitude." - Scott Hamilton (I think the guy is Hamilton? I don't know). And I FUCKING RAGE every time I see it.

My friends tell me how powerful I am, how much they feel inspired by my ability to just fucking LIVE MY LIFE alongside all my various disabilities. That's cool. It's not the disability that inspires them; it's the person making the disabilities work with life. Good. Excellent. I want people to see me like that. I want people to say, "Hey, awesome, she does stuff and works with her disabilities to compensate and compromise everything. She is strong because she has to be. I like that. Go her!" They never say, "Aww, look at her, doing stuff despite being disabled... isn't she amazing? I'm so proud and inspired!" Because, ugh. And they all agree. My friends are awesome. Also they don't put up with my shit, because I am human and I make mistakes and we laugh at my slip-ups, because being disabled means being able to laugh at yourself.

I am able to maneuver around my chronic illnesses and find ways around my limitations, rather than trying to push myself to my limits or smash through my limits - which is another bullshit thing. "The only limitations you have are in your mind!" followed by "Tee hee!" And FUCK THAT. I can raise my limits and keep reaching for them. I can find ways to circumvent those limits. But I fucking have my limits, assholes. Shut the fuck up.

Those who know and love me love me for ME, not the fascination of my disability. I am not some fairy tale ideal creature to strive for. I am a gods damn CRIPPLE. I am nobody's hero. I am a fucking gimp. I am a person, a disabled person, a person with disabilities, living my life, not actually caring about how what I do affects non-disabled people. So people can shut up and leave me alone.
I mean, unless I ask for help when my disabilities make it hard for me to do something. And even then, they are not allowed to think of me as inspirational. I am not a Hallmark card. I can be an asshole. I am HUMAN. Quit staring at me with stars in your eyes.

So, yeah... ;-)

Ahhh. I feel better now.