The Return To Innocence

...I do need to get an account of my own, mind you.

A friend posted this, so I'm sharing.

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You need a (free) Medscape account to read this (you may, er, need to fudge a little about *technically* being in the healthcare profession . . . my opinion is that those of us who need to spend significant time managing our medical care are roughly equivalent to being at least *part-time* healthcare workers.) ;P

It's important to stay up-to-date on this, because medical continuing education programs don't necessarily require keeping up with specific disease criteria, and may be more general in nature -- plus, the trigger-point/tender-point exam has been around for so long, it's a matter of habit with some clinicians. You will be best-armed to manage your own care, if you walk into your appointments without assuming that your doctor is necessarily knowledgeable about the *most* recent research.

"[T]he 2010 criteria was to create diagnostic criteria that were more user-friendly for clinicians to use in practice— for example, reliance on the tender point exam, which we know may be incorrectly applied in practice and be misleading in suggesting that FM is primarily a muscle or tendon problem as opposed to being primarily a problem with sensitization and dysregulation of the CNS. The new criteria rely more on pattern recognition of the constellation of chronic widespread pain along with other characteristic features such as fatigue, sleep disturbance, cognitive dysfunction, and irritable bowel symptoms—symptoms that may occur either as an independent entity or in association with other chronic illnesses such as rheumatoid arthritis or osteoarthritis."

http://www.medscape.com/viewarticle/831471

Also, a recent study has shown that fibromyalgia patients process multiple types of sensation differently, not just pain sensations:

"Brain scans of patients with fibromyalgia showed that they processed nonpainful stimuli, such as sound and touch, differently than the brains of people without the disorder. This may explain why patients often complain of hypersensitivity to sensations in everyday life, author Marina López-Solà, PhD, from the Department of Psychology and Neuroscience at the University of Colorado, Boulder, told Medscape Medical News.

"What we wanted to know is whether in fact there was something in the brain that would account for these feelings in response to stimulation that is not painful in nature," Dr. López-Solà said. The study, published online September 15 in Arthritis & Rheumatism, used functional magnetic resonance imaging to show that patients with fibromyalgia processed visual, auditory, and tactile sensations with reduced brain activity in primary sensory processing areas, combined it with higher activity in sensory integration areas such as the insula, compared with individuals without fibromyalgia."

http://www.medscape.com/viewarticle/831831

Please feel free to quote and repost anywhere -- just please don't attach my name to it, since I don't want to lose access to *my* Medscape account. Thanks!

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I must quote this, because it struck me deeply and knocked me over and stunned me and amazed me.

*****
From: naamah_darling.
I don't know if I can explain it, any more than I can explain why I find anyone amazing, but you're open about what you are and what you are going through. You don't expend energy trying to be normal, and you never seem to even want to. You aren't afraid of what you ARE, even when the things that HAPPEN, sometimes because of things that you are, are scary. You seem sometimes scared of things that happen or that you (body/chemistry) do to you, but not scared of yourself, really. You're fierce. You're . . . we don't have a word for it. The way in which children and animals are alike, that we *call* innocence, but isn't innocence, it's just a kind of transparency and guilelessness-without-cluelessness. You're contradictory, and this isn't a problem. You've imposed . . . not order . . . but some sort of reason and meaning and story on the chaos in your life, and you have made beautiful things out of it inside you. You persist. You change, you are not destroyed. You're mercurial, joyful in the sense of being flat-out at everything you feel and not in the sense of being always happy, you're generous, you're very kind, you're forgiving. You aren't afraid to spend a lot of time working with and understanding yourself, because you know that is important. You are more people than just-the-one-you you. You are comfortable working with shape and meaning and color, when words aren't good enough. Whole parts of you are indescribable. You're a *good person*, while still being strong and fierce, and that is overwhelmingly obvious to anyone with half a synapse. You belong in fairy tales, like so many of the rest of us, writing better endings. You're kind of amazing.

And tangentially, THAT is why when people are all like "disabled people are so inspirational!" I get kinda pissed on the grounds of "THESE PEOPLE THAT I KNOW, they are SO MUCH MORE than a stepping stone for your ego or a friendly reassurance that hey, if those people can manage to get themselves to a beach/a gym/on a horse, you have a good chance of not being an utter asshole failure your entire life, and accomplishing REALLY important things!" and at the same time am like "No, really, we ARE inspirational; you have no fucking idea how 'inspirational' the disabled folks I know are . . . and if you had one iota of their self-awareness you might not be saying such asinine crap."
You want to find disabled people "inspirational?" I'll accept that . . . if what you are finding "inspirational" is their honesty in speaking out and sharing their opinions, their desire to help others, their weapons-grade swearing vocabulary (so many disabled people I know HAVE THAT, it's glorious), their ability to incorporate something literally disabling into their self-image and life when our culture gives them limited scripts and limited opportunities, their persistence in navigating the obstacles placed in front of them not by what they are, but by how our culture and the many dickheads in it unwittingly and often VERY DELIBERATELY make it harder to do so, the fact that they are often poor as dirt but are the most generous people you will ever meet, that they have known pain and so they often know great compassion.

*THAT* SHIT IS INSPIRATIONAL.

So is persistence, yes, which is why I am always impressed when I see someone who has had to deal with major issues accomplish something that is made particularly difficult BY those issues SPECIFICALLY, but when that sort of thing is nearly always ONLY praised in the context of visible, physical disability, or when it's some completely unrelated shit, that pisses me off.

It's like . . . people are apparently impressed by when disabled people do anything *while smiling*, because that indicates the triumph of overcoming our miserable existence? Or that we have a good enough attitude to forget, for a moment, that we are fucked up and are supposed to be miserable constantly? I don't even KNOW. But these same people aren't finding me inspirational when I'm at my blackest and am hanging on by my last claw, which is arguably when I am being my MOST BADASS. That's when I need to be pulling up my bootstraps and thinking my way out of it with sunshine and baby kisses. But an ungroomed, exhausted, surrounded by laundry, not moving, fat, blotchy, cat-strewn DEPRESSED person staring at a computer screen or TV or at nothing in particular doesn't look good in a facebook picture. "This person: probably exercising more willpower not to give up hope and eat a bullet than you will exercise at any point in your whole life. Stop. Bitching. That. Your. Yoga. Is. Hard." <---- Nobody wants that. (And, while maybe sometimes true, it's also kinda dickly, because Suck Olympics are uncool. The things that have made me most miserable sometimes do not seem to be proportional or make sense. To wit, the hour-long crying jag I had when my last pet scorpion died, years ago. Dude, I cried less painfully when my GRANDMOTHER died. What even the HELL?)

All I know is that the shit people usually talk about as being inspirational is not really very inspirational to me. Like, *if* it's true that Chris Evans really does have anxiety/panic attacks (never read reliable info about how severe his "problems with anxiety" are, though he apparently went into therapy) and he still navigated two MONSTROUS blockbuster movies and associated press events, I find that totally fucking impressive, because I KNOW WHAT THAT IS LIKE, and I know I couldn't handle it. And that's the stuff people don't seem to understand. That's the stuff people latch on to and *make fun of.* Because people who don't Get It can be real dicks about that stuff.
*****
I truly believe that if Namaah and I lived closer, we would see each other several times a week and never get tired of each other's company.
My husband once told me that everyone has multiple soulmates, that a soul can be split into many different parts. I think Namaah may be one of my soulmates. It took me five years to realize that, and that's okay. I like to take things slowly.

Well, I find myself in a sudden, abrupt, creepy Charybdis tunnel of depression with panic, a violent episode that is making me want to rip my skin off... which means that the fibromyalgia, hypersensitivity, synesthesia, and sensory processing disorder have jumped into the fray. I know the world is not ending. I know the world is not ending. I know the world is not ending.
I need my cats to nuzzle me and nibble my cheekbones and purr very loudly in my ears, because I know the world is not ending.

Klonopin, to me! Lepidolite gemstone, to me!

Best thing for me, might be contradictory... taking shallow breaths while rocking back and forth, knees to chest, because everything is fine, I am not having an out of body experience, all is well, my skin is not on fire, I am fine, my brain is not going to destroy my sense of self.

Someone tell me a story, any story.

It starts with Saturday, Imbolc 2013.
See, on Facebook, I ran into the girlfriend of a guy I had been friends with for years but had never honestly had one on one time with. Which is the story of my life, actually: Having all these friends and these acquaintances, and having memories of only parties, large gatherings, where if I wanted to talk with someone alone I had to almost push my way through and schedule a place.
Ben had always been The Dude. He abides. He has always abided. He is friends with so many people. It is understandable. His girlfriend, Jess... I didn't know her. We seemed to have many things in common. After months and months, I finally reached out to message her. And we began talking. And something started happening.
I said, "We really really need to get together. Just us. No parties, no house gatherings. Adam may or may not be home. But no matter what, I want you meet you, in my house." And she agreed, and we made arrangements for Imbolc weekend. Adam was indeed going to be home, so he and I set up for brunch and awaited the arrival of Ben and Jess.
They arrived, and I hugged Jess like an old, lost friend, and looking at her there was this instant knowing, this instant understanding and energy of "Yes, I know you. It has been so many lifetimes. I missed you." I hugged Ben the same way, but with a little less intensity, as I already knew him.
After a magnificent brunch, I gave Jess a tour of the upstairs and showed her my gemstones, and we talked about our spiritualities, our energies... how I am a beacon and she is a generator. And yes, the energy that came from her made my head buzz pleasantly. I realized that several items I'd been keeping hidden had been meant for her, and she was extremely grateful. I had randomly thrown wood brushes, lip balms, skin creams, gemstones, and makeup into a black canvas shoulder bag; I gave her all of it. It turned out that it was all exactly what she needed, even the bag. It had all been intuition and connection. I had known her already. And we talked about knowing people, about how she and Ben had known immediately that they were for each other. We talked about energy, about metaphysics and quantum physics. We talked about getting together again, since they live very close to our neighborhood.
When they left, and the energy was still rushing around the house and my head, I sat and considered. I believe I tend to be a little forceful and intense when establishing a friendship with a person I deeply like. I wanted badly to grab Jess' hands and tell her how deeply I knew her, how intensely we connected. But she knew. It was in her face. She always made eye contact when we talked and she always smiled at me. She glowed.
Later, I messaged her, asking if I did okay, if I wasn't too extreme, if I didn't put my feet in my mouth too much. No, she said, she and Ben had genuinely and honestly had fun and wanted to see me again. And that relaxed me more than I could have realized.

Making friends is so, so, so difficult, because I need to communicate on specific levels before I can actually approach them. Fascinatingly enough, Facebook and Livejournal are among the best things that have happened to me regarding this kind of communication. I need to type out words, ritualistically, deliberately, allowed to pause and stumble and correct. I need to assure myself that there can be a connection when we meet. My family cannot understand, and I know why, and I get that. But I am unable to simply walk up to someone and start a comfortable conversation without feeling an absolute terror of possible rejection so deep that I can hardly speak.

I love fiercely, I love deeply, I love powerfully, I love in ways that seem insistent. I need friends who can do that with me. And yet I will always, always wonder if I am making mistakes, if I am coming off as "too crazy, too weird, too dumb, too whiny, too clingy, too repulsive." I have learned that in the past, people have questioned my relationship with my husband, wondering how he could "put up" with me, if I was truly the right partner for him, if he could even handle me on a constant, consistent basis. I have taught myself to let those comments go, because nobody has any say about my relationship but my partner and myself. However, it really is fascinating and very interesting that people who should know me would assume that I am not good enough to be loved by someone who has so many different ways of living than I do.

Loving me is a hard thing, a wild thing, a weird thing, a deliberate thing, a test of strength and resolve. I am intense and extreme and stubborn and wistful and insane and I am too much inside my own head and quite often not fully aware of my environment. To love me is to live a journey through many worlds. I just want friends who can do that for me. I don't even care if they would badmouth me. These days I have stopped caring about many things.

The heart-breaking problem with online friendships is that meeting in person is usually improbable, or highly difficult. But if I were able, if I had all the money and opportunity, I would find a way too meet all the friends I have made online who I knew could love me the way I needed.

Right now, all I know is that I must see Jess, and Ben, soon. Maybe it will help bring me out of this quantum shell I have constructed around my heart.

Yeah, I think I'm starting to slip into a depressive episode.
I just want to stop reacting whenever anyone insults me in any way.
I feel like crying over... I don't know, nothing and everything.
That is why watching Futurama and My Little Pony Friendship Is Magic is comforting, so shut up.
I want people to stop telling me how to be or not be physically and mentally disabled, bisexual, ethically Jewish, eclectic pagan, psychically sensitive, a female, very short, curvy slender, balanced between holistic and pharmaceutical medicines, a writer, a reader, an intellectual, a human.
I want to remind myself how to ignore those people and live my life my own way no matter who says what. I want to stop reacting and overreacting. I want to remind myself to just shut up and walk away with the knowledge that they will not learn nor understand, but others will.
I want to learn how to actually make and keep more friends on my own without wanting to run away.
I want to squeeze all my toys and dolls and meditate and cry cleansing tears.
I just want to be.

My nervous system is determined to be difficult today. Sensory processing disorder has me itching and twitching and fidgeting and wanting to not be in my body for a while. Synesthesia is acting up a little and I keep mixing up sounds and sensations and tastes, colors flashing in the back of my brain. My skin is humming and crawling and I want to shout and smother things. Tactile allodynia is acting up and my jeans feel like needles and the breeze from the fan feels too sharp.
Ah, well. It will calm down soon. Always does.
My hair feels like silk right now, so running my fingers through it is soothing.