The Return To Innocence

It seems that the names of all my favorite lipcolors seem to fit me in some way:

Bare Minerals: Italian Ice, Passion Fruit, Red Zin, Courage
It Cosmetics: Pretty Woman, Love Story
Revlon: Red Velvet, Cherry Tart
Sally Hansen: Cherry Twist, Berry Blend
Nars: Shanghai Express, Flamenco, Fire Down Below
Too Faced: Stiletto Red, I Want Candy
Aveda: Cherrybud, Maracuja, Ginger Lily
Salma Hayek Nuance: Passion Pink, Paprika

(Also, that list is mostly to remind myself of what lip products I own and regularly use.)

Because the meme I originally linked to on Facebook kind of irritated me and some of my more able-bodied friends with the author's answers, I'm doing my own.
(http://www.butyoudontlooksick.com/articles/written-by-christine/30-things-about-my-invisible-illness-you-may-not-know/)


1. The illness I live with is: *deep breath* Cerebral palsy (spastic-ataxic hemiplegia), Spastic Hypertonia (with spastic hemiparesis and intention tremors), Fibromyalgia, Temporal Lobe Epilepsy, Asthma, Raynaud's Disease (primary), Sensory Integration Dysfunction, Attention Deficit Disorder (non-hyperactive), Dyscalculia, Obsessive-Compulsive Disorder (mild), Sciatica, Hyperlordosis, Migraines, Non-Allergic Rhinitis (mainly gustatory), Anorexia Nervosa (recovering), Chondromalacia Patella, Joint Pain (overall), Clinical Depression (mild to moderate), Anxiety Disorder (general and social)

2. I was diagnosed with it in the year: Birth in April 1979 up to age 32?

3. But I had symptoms since: Birth.

4. The biggest adjustment I've had to make is: Understanding that there are many things I can do but there are many things I need to forever compromise on and compensate for. Like, I really can do lots of things but it will hurt like hell, it will be quite difficult, and I must find my own methods. Also, really needing to make all of that known and understood so people understand that I have Medical Issues and can't do everything the way they do.

5. Most people assume: That I don't look disabled. That I'm really cute when I'm angry and therefore I can't actually get angry. That I am completely weak in every way.

6. The hardest part about mornings are: Waking up without agony. Getting out of bed without agony. Crying myself awake because it hurts too much. Actually waking up at a decent morning hour before 11:00 AM.

7. My favorite medical TV show is: I'm not sure I have one. Any SF/F show featuring futuristic or magical healing tools? Babylon 5, Star Trek TNG, Star Trek DS9, Farscape, Star Trek VOY, Star Trek ENT, Battlestar Galactica, Caprica, and Futurama come to mind. And I loved M*A*S*H when I was younger.

8. A gadget I couldn’t live without is: Laptop, Smartphone.

9. The hardest part about nights are: Sleep without constant pain and constant waking. Nightmares. Nightmares with pain.

10. Each day I take: Seven or eight pharmaceutical pills, at least twice as many supplement and vitamin pills. Did you want the whole list?

11. Regarding alternative treatments: I was actually raised on them, as my mother didn't really trust pharmaceuticals (I was, of course, vaccinated, since you don't fuck with that, and vaccines are important to me). When I was younger, I echoed my mom's somewhat fervent desire for supplements and alternatives over prescriptions, and as a result I didn't get properly medically treated for epilepsy and fibromyalgia for many years. Eventually, I got the fuck over that and started taking pharmaceutical drugs that helped so much and I was grateful and felt stupid. I still go for alternative treatments when I can, but I carefully balance them with the pharmaceuticals. I refuse to be one of those people who thinks All Big Pharma Is Evil and Alternative Treatments Are The Best Way To Save Us. I am profoundly grateful for vaccines, for seizure drugs, for depression and anxiety drugs, for pain drugs. I don't know where I would be without them. But at the same time, if I can find an alternative or supplemental treatment that works better for me for an issue, I will go with that. It's called supplement and alternative for a reason.

12. If I had to choose between an invisible illness or visible I would choose: Both. The cerebral palsy classifies as visible, although mine is mild enough to be less visible to those who aren't looking for it. And those symptoms are very evident when I am tired enough. The rest of the pack, being mostly invisible, classify as ice-breaking conversation starters to bounce off the cerebral palsy. I'd rather someone see me hobbling, ask questions, then learn about the rest.

13. Regarding working and career: I worked in library settings from age 18 to age 30. Some people expressed surprise that I was able to work for so long without falling apart, including the judge who granted me SSDI. But that proved how strong I was. I miss working. I miss lots of things. But now that I am on disability from my government, I plan on making the most of doctors and healing and treatments, so I can get on with my desired career as a novelist. I want to write fantasy novels and stories and I think I can manage that.

14. People would be surprised to know: That I have so many issues, because plenty of people have expressed wonder and shock that I have stuff really wrong with me (See: But you don't look disabled!).

15. The hardest thing to accept about my new reality has been: New reality? I've been like this since I was a child, so I've already accepted. But I suppose my newest reality is that the government deems me disabled enough to receive money and assistance, and at first that was hard to accept. I was bouncing between "Yay, they think I'm disabled and worth it! I'm so relieved!" and "Aww, shit, they think I'm disabled and worth it. I'm sad now." In fact, I kind of felt like Fry in that Futurama episode "A Fishfull Of Dollars" when he learns that he has billions in his bank account from his being frozen for a thousand years with his account earning all that interest, and his response is to hyperventilate, foam at the mouth, and collapse. When I saw that my back-pay had been deposited, my heart skipped a beat and I started whimpering.
I've watched the system being constantly abused by citizens who aren't disabled and somehow got through and that right there is hard to accept without blackout raging anger. Like, I and many truly disabled friends spent years getting denied and waiting and waiting before we were approved, and these cheating assholes worm their way in? Blackout raging anger. Yeah, that's hard to accept.

16. Something I never thought I could do with my illness that I did was: Survive. There were doctors who honestly thought I would not live past thirty without severe issues. On one hand, they had a point, as I started snowballing downhill once I turned thirty. But three years later, I am alive and doing all right. I plan on being ninety and playing wheelchair games with my husband.

17. The commercials about my illness: Never seem to show people under the age of forty. Younger people have these problems too!

18. Something I really miss doing since I was diagnosed is: I was never good at it, but dancing. If I hadn't been born with the brain damage that led to all these disorders, I probably would have been a dancer and martial artist. I mean, a dancer and a martial artist without disabilities. I know there are plenty of disabled dancers and martial artists. I know I could technically train to become a dancer and martial artist with/despite my disabilities. My point is, I wish I could be an "able-bodied" dancer and martial artist.

19. It was really hard to have to give up: That gymnastics class when I was seven and that tai chi class when I was sixteen. And a bunch of other stuff. Like physical work that I really wanted to keep doing. Mental and intellectual work. Actually feeling smart, even though I hate the whole "Intelligent Quotient" concept. I mean, I used to win high school spelling competitions without trying, leading the other kids to cheer like sports fanatics and chant my name until they were hoarse. And when I came in second place, they chanted even harder and I spent weeks being treated like a champion, being asked to spell "popcorn" and "Doritos" in the cafeteria. Now my brain actually stutters. Fuck a bunch of that.

20. A new hobby I have taken up since my diagnosis is: Qigong exercises, holistic skin care.

21. If I could have one day of feeling normal again I would: Not have it. Some of my medicines give me a few hours of feeling some kind of "normal" and I just keep going. So I would just do what I do. However, if I really wanted to take advantage of feeling normal for a whole day, I would go dancing and do some serious martial arts training. And then I would curl up crying at the end, because it was only one day and it was like a massive fucking tease.

22. My illness has taught me: Everyone is fallible. No matter how smart, no matter how knowledgeable, no matter what they study. Also that the only person who truly knows me and my disabilities is me. And that anyone who claims to have my "cure" or "permanent treatment" is probably full of shit. The world is full of things we don't understand.
Also? It has taught me to laugh. A lot. To make fun of my disabilities. To enjoy silly stories, to make other people laugh. That is so important. I need to laugh as much as I can.

23. Want to know a secret? I twitch and feel bubbling anger whenever someone tries to explain what is wrong with me without truly knowing me. I mean, I have strong desires to punch them, or throw them against a wall, or do something rather violent and vicious. And I do nothing because I just don't want to hurt someone who is probably just assuming they can help.

24. But I love it when people: Listen. Understand. Express honest sympathy and/or empathy. Offer help in little ways. Ask me questions. Honestly want to know what is wrong and how to help in their own ways. Not insist that they can "cure" me. Listen. Laugh with me. Put me at ease. Again, listen to me.

25. My favorite motto, scripture, quote that gets me through tough times is: "It's all good."

26. When someone is diagnosed I'd like to tell them: You are not alone. You are never alone. It won't be easy. It may never be easy. You are your own best advocate, and you will need yourself. Make sure you have a support group. Make sure you are loved and understood. But mostly, treat yourself well. Laugh with yourself. Be as happy as you can. Treat yourself well.

27. Something that has surprised me about living with an illness is: I have been surprised by the community. Other people dealing with this? Advocating for our rights to live as any "able bodied" person? And I can help just by writing? Sign me up.

28. The nicest thing someone did for me when I wasn't feeling well was: There is no one thing. It is the friends who offered to drive me places. It is the friends who helped me with chores and errands. It is the friends who helped stretch out my limbs and massage my muscles and gave me very helpful information. It is the friends who mad me laugh until I cried breathlessly. It is the friends who dedicated things to me. It is the friends who told me how deeply they loved me. It is the friends who really listen and understand and know me without question.

29. I'm involved with Invisible Illness Week because: Wait, we have a week?

30. The fact that you read this list makes me feel: Maybe like I’m doing something right. Maybe.

Because I am feeling physically and psychologically decent at the moment, you get to be subjected to my face with no makeup, no touch-ups, and my standard soft smile with my sparkling mocha brown eyes and insanely pale complexion that somehow tans in sunny climates (Thank you, ancestors from Sicily, Greece, Hungary, Romania, and Russia). And my hair is behaving. It maybe be dyed with a "Gold Mocha Medium Brown" shade but it is extremely close to my natural color anyway.
Also, this lip salve is fantastic. (http://stores.walk-in-beauty.net/-strse-185/Sacred-Circle-Neem-Plantain/Detail.bok)

Cats, cuddling, clonazepam, carisoprodol, chocolate, cheese.
My amygdala will probably be freaking out heavily for the next three weeks, but the rest of me seems to feel okay.
Unless I count the daily simple partial seizures, exhaustion, true muscle weakness, inability to concentrate, headaches, xeroderma, bruxism, and lack of balance.
This may be why I keep watching all of Futurama on a steady loop. People who tell me not to watch a single television series over and over really don't understand how my brain works.

Also, this is sort of what it looks like on the inside of my mind right now.

Part One: (and also this story is mostly stream of consciousness and probably will not make sense...)
"In an alien dimension, a thousand years in the future, I lived near a palace. My name was Annalira Lotus Rose Fox. My two middle names came about because after my birth, our ponds and gardens grew multi-colored lotus flowers and multi-colored wild roses when it should have been impossible.
My family was full of shapeshifters; the favored creatures were foxes and cats, falcons and owls, and so the family names reflected all of that. My parents were Foxes, and I should have been as well. I was the odd one out because I couldn't change shape, but parts of me could change in other, weird ways. My eyes changed between coffee and honey and periwinkle, my hair changed between dark chestnut and golden auburn and raven black, my skin changed between snow white and warm ivory and light bronze. Usually none of these color shifts matched and there were always bizarre shifts and combinations. I always wore cosmetics because I saw too many problems, always wanting to conceal blemishes and brighten colors. I became very skilled at mixing oils, creams, and skin potions for my siblings and cousins and friends, because I needed to for myself. I looked very young even as I approached adulthood, and one of my best friends decided that I would never look old. I laughed nervously every time she said that. She thought I was the most beautiful woman she knew, and I let her think that because beauty is always subjective. Her brother hinted that she was in love with me. One day I will tell her that I always knew and that I love her too. One day, I will learn telekinesis from her, because that is her biggest talent, and that day might be our first date. I will probably marry a man one day but I will probably marry her too.
I was the smallest and shortest one in my entire family. They nicknamed me Little Bright Fox, and said that while my voice was soft it carried for miles. My aura was giant, they said. When I played with magic, I could make my energies visible in a way nobody else could. Those energies were extremely shiny and multicolored, which was uncommon.
I didn't have any specific talent the way most people in my country had. I had several small skills that I often blundered through. I was a born storyteller and artist, a psychic sensitive and an empath in many ways. My parents sheltered me too much. My birth was upsetting and I nearly died several times. An Owl uncle and a Cat aunt both said that I was too close to the Veil Beyond and to other realms, that entities beyond the veil could sense me as much as I could sense them. I grew up with physical and neurological pains that the best medicine couldn't heal, neither technology nor sorcery. My family made sure I had the best they could offer, but the Owls and the Cats kept predicting hard and intense life roads for me. They gave me medicines for the brain seizures and the mental imbalances, for the muscle spasms, the body fatigues, the nerve damages. I would be lame and weak, delicate and fragile for the rest of my life, but the Falcons predicted that on the inside I would become steel and diamond, supernova and volcano.
When one of my Falcon cousins discovered that I was able to cross dimensions without suffering the usual side effects, she was unable to keep it a secret, and the royal family asked me to work for them. After reviewing my medical disabilities, they set up a special financial and benefits account for me so I would be protected during my interdimensional travels. Walking into the Between never damaged me in any way; the Queen and the royal doctors assumed it was because I had been born partially gripping the Veil Beyond in my psychic hands. All of my Walks in the Between actually felt good, energizing and electrifying in powerful ways. It was how I discovered some of my stronger hidden talents. By the time I had finished an unheard of dozen Walks in the Between without any negative effects, my name had spread across the country, for both good and ill..."

Random stuff:
So, one of the country's most famous celebrity children, Shiloh Jolie-Pitt, turned six years old the other day. I bring this up only because 1. I admire her parents and 2. people seem to be freaking out about her "boyish" haircut, insisting that she must "want to be a boy" with no other possible explanation. Shiloh is a young child, and she was raised with two cisgendered very male brothers whom she probably wanted to emulate; also a very short hairstyle is probably easy to maintain given all the traveling with the family. When I was a kid, I wanted my hair cut short in a pixie cut, and other kids kept asking if I was a boy. I really wish people would shut the fuck up about a child's hairstyle. Why is there something "wrong" with a little girl wanting to have a hairstyle and clothing style that appears coded as male or unisex? She's got many many years ahead of her. Who knows who she'll be in a decade or more?
Also, yes, what they said: http://thestir.cafemom.com/big_kid/132069/shiloh_joliepitt_wants_to_be

House stuff:
The bedroom mini fridge has been successfully unfrozen with a hair dryer after an hour. The freezer section is no longer encased in half a foot of ice, and the thermostat has been set to halfway. Things look better. Now my skin care products and beverages can be cool without being iced.

Cats, the original exfoliator: Exfoliating your skin since... whenever humans started domesticating cats and whenever those cats started licking those humans.

Stuff I don't care about: People telling me how horrible junk food is and telling me that I should cut out certain foods forever because they think they know my food better than I do.
To paraphrase Twilight Sparkle, "This is my mini chocolate cake, and I'm gonna eat it!"

Life:
I once told someone, "Okay, since you're so invested in my uterus, why don't you carry and birth my fetus and then raise it? Because it's not something I will ever want."
Really, if I could, if it were possible, I would totally be a uterus donor. Because, seriously, guilt-tripping cisgendered women into having children just because they have working wombs is phenomenally disrespectful, dishonorable, and ridiculous. But it happens, and it is insane. Shut up and quit telling me how to use my uterus.

Adam has been having lower back pains as bad as I've been having, so we're seeing his doctor tomorrow. One of us has to be able to lift heavy things. I don't care if he can still lift hundreds of pounds while injured, pain is pain. I suggested an acupuncturist when he has the time. We shall see what happens.

My lunch is a blueberry wheat bagel spread with strawberry preserve and Gourmet Triple Cream Cheese; I think the cheese is St. Andre. This is really really delicious.

Ever since I got my current Pony dolls (G4 Fluttershy and Twilight Sparkle, G3 Garden Wishes renamed Lotus Star), the sound of a brush or comb moving through hair will instantly cause Luna to come running, even if she is asleep. Now, when I brush my own hair, Luna will run and leap onto the couch, settle in my lap, and demand that I stop wasting time and precious brushing energy on anything but her fur. Oh my Luna, you ridiculous precious darling, I adore you.

According to this link, I could be Deep Autumn, Soft Autumn, Deep Winter, or Clear Spring. Or all of them. Damn it, I don't even know. I'm the child of two artists and my mother worked in fashion illustration; color has been in my life forever. I stared at myself in the mirror for ten minutes, I stared at my gold and silver jewelry, I stared into my t-shirt drawers, and I still can't figure it out.
All I know is: my foundation and concealer needs to be neutral to warm with absolutely no pink; I can't wear orange or coral or purple based lipcolor; I can't wear light or medium green eyeshadow; when I wear silver the silver stands out and when I wear gold my skin stands out; my very pale skin burns then tans like bronze in summer and is pure snow white in winter; my veins are blue-green; my ethnicity is a mix of Sicily, Greece, Russia, Hungary, Romania, Bessarabia, and Ashkenazi Jew; and I look best with dark hair of any shade. I have just confused myself greatly.
http://personalitycafe.com/general-chat/37461-what-your-color-season-spring-summer-autumn-winter-fun.html

It needs to start raining already. Everything is hanging in the sky, waiting, and it's making my everything hurt again and still and blah.

I am truly trying to remind myself that I am a strong, amazing, wonderful person and woman, so this is a reminder.

Hey, it's Celestia the Lavender without her crown or pendant. I like her better this way. (Also, I'm not wearing any makeup; somehow that feels relevant.)

And you know the funny thing? Ever since I was a child, I've had an imaginary friend that was a pale purple alicorn. And now here she is in toy form. I shall call her Celestia the Lavender. And when I get the real white-gold toy, I shall have the true Princess Celestia.

(Being A Weird Wallflower Nerd Is Awesome:
When sometimes all it takes to make you smile is a winged unicorn toy and a children's television series about magic ponies with subtle adult references.)