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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)
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So! I did a thing a while back. I didn't tell anyone. Anyone at all. And now it is time to come clean, because it's been long enough that I think I can finally shoot down the pushers.

I did a second gluten-free trial, lasting just under one month. I spoke to all three doctors and specialists, who were okay with it. Although I shall quote my primary physician, Dr Carolyn, who has treated me since 2003: "I don't see why it's really necessary, though. You've never had gluten sensitivity, let alone celiac. But if it will help you psychologically, then sure. Let me know." And to quote my neurologist, Dr Debbie: "Why are you doing this to convince other people? I mean, I'm genuinely amused. You don't need to cut out gluten for health reasons, anyway." All I could do was shrug and say, "I guess to prove a point to the health-pushers?" She said I had a point, since that was irritating, to be pushed at.

The results were...

Wait for it...

Nothing.
Absolutely nothing.
There was no reduction in chronic pain, fatigue, inflammation, or malaise symptoms of any kind. I did not feel more energized nor clear-headed. My life did not change, not even a flicker.

Now. For the past several weeks, I've been verbally assaulted across the board by people who just want me to feel better - by using blatant, callous emotional manipulation to force me to comply.
The most popular one so far has been "Well, what if you were dying? What if you found out that gluten would kill you and that by going gluten-free you could save your life?" See, okay, that is a fascinating thing right now. That is one of the most manipulative, passive-aggressive, hard-hitting, one-sided forms of coercion ever. The speaker is hoping to catch the listener in a corner, with no choice but to agree. And see, they're correct there. Obviously if I were in such a scenario, of course I would go gluten-free. But the catch is that I am not dying. I am not sick. Thus, no desire nor need to go gluten-free. Not unless that life or death scenario occurs!
Following up that particular attack, we then have this, "Well, then, don't you think going gluten-free would at least reduce symptoms and pain?" Which ties into the first, of course, and is subtle enough to seem harmless and reasonable. And... no. Because gluten causes problems if one is reacting to gluten. Which I wasn't. "But I read this book written by this doctor that said that for everybody, gluten can cause overall body inflammation and pain!" For everybody, really? All seven billion humans, with the exact same medical issue. One would assume the CDC, FDA, and various world governments would be all on top of that like roaches on dog food. Plus, I listened to a conversation said by this doctor, who is personally treating me, that said that I didn't need to restrict my diet like that. But you're right, book-writing doctors would know better.
Now, the big guns. This attack is my favorite, because it strikes right at the heart, it tries to destroy the option of choice: "So, I guess you'd prefer a life of pain over fewer symptoms." It can be said in multiple ways, but the core is always a smug, smarmy, morally superior, I've got you now rhetoric. It's a tough one to counter. If you say yes, you seem as though you just don't ever want to really help yourself after all. If you say no, well, why haven't you taken their advice? You see the attempt at emotional superiority and twisted logic? At this point, you can tell they are grasping at straws. They've seized on an idea, fixated, and found themselves unable to let go. I get that. And they most like don't even realize that what they say to you is painful or upsetting. They only want to help. They care deeply enough. Obviously, when you love someone, you want to see them happy, healthful, pain-free. When they are in chronic pain, when they hurt every day, you hunt frantically for ideas about treatments. Even when they have doctors and treatments, you just want to do something, anything, because you can't stand to just stand by. They're hurting. Why can't you help? You feel helpless.
But emotional manipulation and verbal attack is a very ugly way to go about helping. They are more likely to stop talking to you. In fact, with most of these people, I've started not talking about my symptoms. Which is funny, because these are my support networks. These are support groups, people who are willing to help. Except for the ones who don't know how to help, the ones who don't have chronic illnesses like mine, who can only see the experiences vicariously. Intellectually, they may understand that it is inappropriate to push, but it feels so right emotionally that they can't help it. And I've been there. I've done that.
The problem here is that if people actually cared about your pain, your chronic illness, they wouldn't apply these manipulations; they are generally more concerned with winning you over and being right. Nobody truly means to be an asshole in a situation like this.
However, in the end, that gut-sensation of being right, of knowing what might work, is overwhelming and almost brainwashing. It's almost cult-ish. I'll call then health preachers. This isn't about just gluten-free. This is about every dietary alteration ever suggested. This is about every medical treatment involving home treatments like food and exercise, meditation and yoga, supplements and massage, etcetera. I haven't even gotten to pharmacological medicine and holistic medicine yet. Or the people who deny psychiatric illnesses, who think psychiatry is fraudulent, who believe firmly that clinical depression isn't real and is literally psychological, delusional. Frustrating, isn't it.

So, anyway. My Plan. I went gluten-free for just under a month. I kept notes. I was alone, because Adam was away on business, so I just cooked for myself and didn't touch anything with gluten. I was hungry and bored. I mean, the food was delicious. There was a lot of quinoa and lentils and sprouts and cheese and meats and snow peas and carrots and apples. I ate a lot of steak. But I just felt annoyed.
My doctors were extremely amused and not at all surprised when I told them the results.
Seriously. Three separate doctors. All saying the same thing. I mean, at this point, if I were to tell Dr Carolyn to refer me to a blood test just for the hell of it, she would quirk an eyebrow at me and ask who was giving me the money for the test (I don't know if Medicare covers those), and we would laugh.
But I didn't tell anyone I knew. Not for the whole duration. Here and there, I casually mentioned that I'd done gluten-free trials without any changes, I casually mentioned that I didn't need to cut out gluten and that there were plenty of other ways I was already mitigating symptoms. I stopped updating my support groups. I just said that I was doing well on my medications and therapies, and when the weather got bad I would flare up terribly and kept treating myself. I mean, even if all my symptoms vanished, I would still not be rid of pain, because of the cerebral palsy. Which 1. is never going away and 2. is getting worse as I age, which cannot be stopped or relieved. Which people rarely realize, because nobody thinks about the crip adults.
So, yay, you, my LJ friends, get to hear it first. I went gluten-free and it didn't do shit for me! Yaay, that was pointless! Let's dance!
It was fascinating. During my trial, I was reading entries on my friends list about people cutting out gluten and realizing that their lives were changing for the better, that they were celiac after all, or intolerant, and that going gluten-free made all the difference and they could love food again, woooo! I was so happy for them I almost cried. It was amazing, reading about their joy and euphoria and ecstasy. Food, they cried! Food is wonderful again! And I nodded, and grinned, and focused on myself and how my gluten-free test trial was just like any other day, except boring.
And I put up with preachers, and pushers, and well-meaning manipulations. And I said nothing. It did hurt, being attacked like that. I sobbed and snarled and surrounded myself with friends who knew the powerful irritation of being shoved around by gluten-free pushers. I kept going. I took double the Klonopin. Days and weeks passed. I stopped the trial. I ate grains and wheat again, slowly, lovingly, with savor.

Today, I was recommended a wonderful book called "The Gentle Art Of Verbal Self-Defense" by Suzanne Haden Elgin. I've gotten a sample of a few chapters, and I'm so hooked that I'll be purchasing the updated version as soon as I have money to buy it. I'm lucky that I've been able to recognize Verbal Attack Patterns recently, but the book will teach me to escape as well as use communication to resolve. I need that. I need to learn peaceful communication getting to the root of the problem without hostile interaction and confrontation, without arguing over semantics. I like to hyperbolize. In fact, a handful of friends and I like to snark at, hyperbolize, and satirize the beliefs of health preachers, like those who firmly believe that gluten-free diets could help everyone who doesn't need them, the way that accepting Jesus will get people to Heaven so the preachers can see them after death and hang out with them in a conforming afterlife. See why this may not work? See why this can be more about the preachers than the listeners?
It is nearly impossible to fight a very calm, gentle person. I need to learn that art of fighting with calm. I need to learn to not be enraged and screamingly upset and insulted whenever anyone tries to manipulate my emotions. I need to learn to break my own cycle of verbal hostility, which will help me handle those manipulations disguised as helpfulness.

Other thing I loathe: Being told that having a mild version of a disability doesn't count. I already discussed cerebral palsy and aging with the chronic pain caused by spastic hypertonia. And they don't back off. No matter how many times you patiently explain anything. Now that is where I really, really need to learn gentle verbal self-defense tactics. Because oh my fucking gods I want to punch them full of holes.

Ahh, humanity. Fun!
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You know it is a bad day when...

A Cerebral Palsy induced fall against carpeted stairs leads to a Complex Partial Seizure which leads to a Panic Attack with wild animal sobbing so intense your partner comes up and worries to death over you and carefully leads you to a couch and gives you water and holds you.

"It's just stairs," you tell yourself over and over. "You can maneuver them. It's just stairs." And at the top, exhausted by victory, you lay on the floor, weak as a new kitten, heart and head pounding to near bursting, crying until it sounds like laughing. And maybe all you can do in that horrific posictal state is laugh. On the inside. Because Epilepsy is a monster and has no qualms about gaining allies.
Now it is time for Fibromyalgia to have its turn. Burn body burn.

I am so tired. I have no more synonyms for exhausted, fatigued, beaten, weakened. I am done.
But I will never stop. If I cannot be myself I will be a dragon.

For those who know my Healthy Multiplicity: indeed, Alicia and Amara were like drill sergeants in my mind. They were the only things that kept me climbing those mountainous stairs. I love my human coping mechanisms.
Typing doesn't make me tired ever. And this must be written.



So... *cough*
I am okay. But I am not okay at all. So many painful things are inside my brain and my body.
It is okay to talk about that, right? To be not okay? To try to pretend to be okay?
See, that is why I love online friendships. Because if I cannot speak without bursting into stuttering wild sobbing, I can type slowly and people will understand. Right? Oh, my everything hurts.
I could say I have a muscle pain, or a joint pain, or a migraine... but I have everything pain everywhere. And I don't know how to explain it without it coming across as "My pain is worse than yours!" and I don't want to do that. Because all pain is horrible. My pain is no worse than yours. Pain is pain is pain.
I don't know what to say. My brain is so everywhere. I feel so split open and raw and drifting. I think some of the things keeping me together are my fictional characters, who still demand their stories.
I want to sob and scream and howl until I am so raw that I cannot speak. Is that okay? I can do that, right? Nobody will bitch at me for complaining, right? I just don't know. I don't know what to do. I don't know how to feel. Fear is something that feels flat but understandable. Like am emotion I am aware of but unable to truly experience in a deep true way. Like crying. It is a thing that is happening. I just feel confused. Why do I feel?
You know?

Oh, yes. The seizure. Oh, Alicia. She appeared to me so quickly, so fiercely, I had no choice but to grab her outstretched hand and run with her. She yelled, "Come with me now! You need to get through the looking glass! There is no time! Amara is waiting! Serena is waiting! Go, go, go!" and she almost shoved me through the portal, and all I remember is Amara catching me in her arms... Amara with her truly calico hair and her stormy eyes of deep purple and darkest blue and pure gold, her short slim muscled hourglass body that held me in an iron grip, my mouth against her olive-colored neck, and our tumble to a cavern floor that was lit with sunlight and moonlight, so I could see her properly, how she was only a few inches taller than me, her mouth pouty and full, her oval face the dream of every American woman in a plastic surgeon's office, her straight teeth bared in strain. She got to her feet gracefully and looked down at me and said in the voice of temple bells, "Rest now. Serena will be here soon. I've never fully introduced myself, but that can wait. We have so much time."
I shook my head. "Alicia said there was no time--"
Amara smiled and entranced me. "Only in her dimension. Here, there is every time. I am everlasting, after all. I love and guard your entire mind and brain, remember? I work with my sister, Amber, who encases everything in your varied forms of spirit and soul and energy and power. Alicia and Serena are limited. Amber and I are unlimited. We shall be with you until the end of everything. You hurt badly. I sense it. Serena will be here in a moment. I will stay with you."
I stared at her. "I've never known you until now. I love you."
"Yes. You were meant to. I am the culmination of your neurology, your neurochemistry, your biochemistry, the stuff in your head that help make you the things that are you. A Self. A Mind. A Brain. I change as you need to change. I will always be here."
Amara my immortal began to slowly fade, and Serena came running. She gathered me in her arms and murmured soothing words, and suddenly I felt as calm and as safe as I ever could.
And then I awoke, and I was a person climbing the stairs.
And I climbed the stairs, sobbing and forcing myself, and at the top of the stairs I lay crying, and then my husband found me and helped me to my work couch and gave me water, and I couldn't talk about my girls, but it was all right. I would be all right.
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I stretched the hell out of my back and legs and arms. It was lovely. I did it my way. I am very pleased and very satisfied. I won't discuss the various burning barbed wire pains that are distracting me even through the codeine, but I will talk about the beautiful meditative exercises I've been working with. Peaceful, serene, tranquil, calm, relaxing, refreshing, fantastic in multiple ways. The scene always changes, but always appears Zen in some way.
I had mentioned that my human coping mechanisms, my spirit guardians, had begun communicating with each other deep in my brain without my conscious knowledge, which leads me to believe that parts of my brain are starting to come together as part of the story, as my unlimited imagination and writerbrain is starting working on a whole new, amazingly unique, private story all on its own. No wonder I have been working on Amber's story beyond these bits of my brain. Amber has also given me free reign to write her as a fully developed character and not just a created coping mechanism.
In general, I am just... very happy.
And the funny thing is that I am in a depressive episode. I have all the symptoms, and I am quite conscious and aware. But I have things that are helping distract me: Talking about my imagination and my creativity, talking about the triggers for my panic attacks and my simple seizures, talking about comedy TV shows and powerful fiction books. Somehow it all is able to keep the major depression away, although it is a very intense fight. Sometimes I find myself weak and struggling, even physically, as thoughts of worthlessness and hopelessness, frustration and terror, pessimism and guilt all slam into me and my wall and my shell.
I suppose I could say I am happy. I feel happy.
But... what is happiness?
"Happiness is a mental or emotional state of well-being characterized by positive or pleasant emotions ranging from contentment to intense joy." Sure, I feel those things. However, there is a strong undercurrent of the exact opposite.
Brains, man. Brains are wild. Brains are weird. Brains are so complex. One day, I want to have an MRI and see exactly what my brain is doing. I want to sit with multiple brain specialists for hours on end, and just... talk. I want to talk about my brain.
Brains, man.
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Quote of the day so far:
"Oh, that's okay. Sometimes my very existence amuses, confuses, or utterly angers people for various reasons. Myself included. I am so fucked up and insane and crazyweird that I unintentionally upset someone or entertain someone every time I do anything. Why am I here? Who am I, really? Hell if I know. I forgot why a long time ago. But it is a good life, full of fascinating people, and I'm happy to stay for as long as it will have me."

Sometimes I just want to be Honey Badger eating pistachios. But I have too many emotions and too many reactions. Damn my screaming amygdala.

My mother says it is impossible for me to not be overly emotional to everything. Even, like, air.

I think that's why I like online socialization so much. I can have my emotions and my reactions and my masks and shells, and everyone I socialize with can have theirs. I struggle with physical interactions so much and I wind up draining my reserves. You know what I mean!
But!! My shells are cracking all on their own because I'm getting more confident. I've been collecting broken beautiful shells left and right. How about you??
We are so beautifully screwed up but we are together and I adore all of you.
Also, cracking shells have started becoming a new symbol for me. I'm covered in layers of shells of different colors and intensities. Gently breaking each one feels reliving.

***

I have no idea why, but right now I am so happy, joyful, blissful, content, and serene that bluebirds should be frolicking around my head. I just feel totally zen.

I am happy about my writing, my book reading, cleaning my house, brushing each cat for ten minutes, taking long walks, meeting random people and having small talk, being on the internet, not being on the internet, being by myself, cleaning my house again, being disabled forever, knowing all my limits and raising those limits and pushing forward when I can and pulling back when I can't, having several canes to walk with, taking medications that work, sharing my stories with people, loving myself because of all these wild flaws and faults.

Even being personally insulted on geek forums because I'm not wild about the fandoms. That makes me happy. Because it makes me laugh. People are adorable!

Just... happiness. Pure. Simple. I can't even explain or understand it. It permeates me. Like a Lotus Sutra. Like a Buddhist chant. Nam-myoho-renge-kyo.
I don't think I could feel anything but happy right now. Even when it fades later, and it will, I shall remember.

Somewhere, Honey Badger is smiling.

Lights.

Jun. 8th, 2013 10:03 pm
brightrosefox: (Default)
The thing about brains is... brains are so complicated. Brains are so complex. Brains need outlets, too. Words are good enough for my brain. I just want to feel safe when I say words out loud. All I've wanted to do was help people. To say, in public, loudly, "You have someone who will listen. You have someone who understands. You have someone who knows what it means. You have someone who will hold you through the worst of the darkness. You have someone who will always shine brighter than any light." Ever since I was a teenager, I was told that I radiated a pure sort of light that drew other minds close. And every time someone who has never seen that light tells me that I'm causing upset or wrongness, that light falters, because how could someone slap me across the face just because I want to speak out through the darkness? I will never stop speaking out through the darkness. I don't care what it costs anymore. I will talk about my brain and its ultimate complications and complexities and sicknesses and handicaps, and somewhere, someone will always be listening. And they will talk about their brains, and we will share our stories, because that is how stories begin.
"Once upon a time, there was a warrior princess born with invisible armor to battle all the damage inside her that would follow her for the rest of her life. For a long long time, there was nobody she could talk to who truly understood. And then, suddenly, there were dozens of people who could understand. And the warrior made it a mission to talk to them all and keep talking. She kept talking even as others misunderstood her, scorned her, and scolded her, since they didn't realize that what she was doing was baring her life wide open, so anyone drawn to her light could share their lives too. She was told, 'Stop putting yourself out there. Stop talking so much about what's wrong with you. Stop focusing on the negative.' And she looked at them, finally, and said, 'No.' Because there was nothing negative. There was no wrongness. There was only her life. And her life was only positive and right. There was laughter, and amusement, and silly things, because even as the pain overwhelmed her, she would keep going, keep laughing. She told stories to those who wanted to listen. She helped many people learn about themselves. She became a teacher, an advocate, a true light in the darkness. She became strong and brave because she had to. And she will have stories to tell for the rest of her life."

bluedarklotus

dragongirlsky

auroradragon

I admit, I got a little choked up while writing this. Maybe I do feel much more defensive and upset and naked to criticism than I thought. I'm really, really trying to work on letting all that go. It certainly doesn't help my mental health.
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You know those migraines that last several days and are low-level enough that you can do things but are still horrendous enough that you can barely brain due to pain?
This is compounded by more hemiparesis, more fibromyalgia flaring, more knee pain (both chondromalacia and notarthritisdamnit in the right knee), TMJ, neck tension, and hypertonia in my left hand. Cerebral palsy and its complexities = buckets of fun.
The cats are less stressed than I am. I don't even know why I am stressed. There is no point. I'm not the one moving the house around. I'm not the one repairing and replacing the kitchen. I'm getting exactly what I want with the kitchen/hallway floor, cabinets, stove, dishwasher, etc. Next week is going to be like camping out upstairs and using the living room as a mini kitchen until the handymen are ready to replace the carpet. I keep telling myself it will all be fun and awesome. My amygdala is yelling, "You are a cat! You don't like change! You get anxious when stuff gets moved around, because your neutral chaos is suddenly not where it was and you can't find anything!" and the amygdala has a very good point.
Meditative exercises are in order, and clonazepam, and such.
People on Facebook are still irritating me with the whole "Big Pharma is EVIL and all pharmaceuticals are POISON and also the greatest cure is medical cannabis!" I mean, I can't wait until Maryland allows for medical cannabis to be a Thing, so I can become a patient. However, I am not going to bash traditional Western medicine like that. Lives have been saved. Fuck you, ultra hippie holistic pushers. I wouldn't be alive to listen to your ranting if traditional Big Pharma hadn't been around the NICU in 1979. I'm all about holistic medicine balancing out pharmaceutical medicine. But there is only so much I can take from extremists on either side.
Funny, because one of my favorite current quotes - found on Facebook - is "The is a huge amount of freedom that comes to you when you take nothing personally." Unfortunately, since we are humans, this is easier said than done. I'm not a robot. I'm also an empath. When I feel insulted and slighted, I do feel the need to at least correct the person. You know, like when someone tells me I am filling my body with Evil Big Pharma's poison, when that poison is the best thing keeping me from falling into a seizure-induced coma or death; or the best thing keeping me from self harm from deep depressions; or the best thing keeping me from endlessly screaming wildly in constant violent crippling agony that I cannot describe. Supplements and therapies can do a great deal, but they cannot do what Evil Big Pharma drugs do for me. So, yeah. I don't mind being in the clutches of Evil if it helps me live my life well.
I try to not take things personally. It does free me from stress. It is easy to smile, nod, and brush off insults like nothing. Sometimes. But, look, we all have those days when everything is piling on us, our moods are dark and growling, we want to bite everyone who looks at us wrong. I don't care if you're a bodhisattva - human emotion runs wild. And that means that if someone keeps trying to push me, I will eventually keep throwing them off a cliff until they get the point.
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Migraine migraine migraine MIGRAINE MIGRAINE NECK PAIN JAW PAIN NECK PAIN JAW PAIN SINUS PAIN.
FIBROMYLAGIA FLARE AND FOG AND ALSO MEMORY DISINTEGRATION AND DYSPHASIA AND HEMIPLEGIA AND ATAXIA AND THIS IS SO FUCKING STUPID.
Oh hello, pharmaceutical and nutraceutical medications. Please help me before I go insane. Thank you and I love you.
See? I'm not being poisoned. I'm not taking placebos. These pills are actually Doing Stuff. So, Dearest Lovely People Who Think Drugs Are Poison and People Who Think Supplements Are Useless: Fuck You, I Am Feeling Better. La la la la. I love you.
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I just got my Official Statement of Yes You Are Disabled And Here Is Why from my judge. Reading through those 9 pages of simple legalese made me want to surf the CFR database again, but mostly it left me slightly in shock, because I barely remember all these evaluations and decisions. Really? Seriously? Is it really that bad?

My gods. I just... I don't know how to feel right now. Seeing it on paper, bolded, with such intense descriptive words... it made me realize abruptly that, whoa, if anyone really doubts me, I can put this in their hands or on their screen and tell them how bad it is. I can make people really understand. I can say "Don't protest. Don't judge. Don't presume. Don't play messianic doctor cliche. Just read. I know you're trying to help, I know you think you're being smart with your research, I know you think you have great answers. But you are not me and you are certainly not all the people listed in these documents who actually made these decisions. And you are doing to me what others do to you. You are telling me how you think I should handle my situation. You hate when people tell you what to do, right? Don't turn around and do it to me."

So, I have a lot of feelings right now. Shock, sadness, relief, grief, acceptance, worry, understanding, helplessness, grace, calm, silence, stillness, fullness, hollowness, light, drifting, intensity.

This is what they said to me. The people who were trained, the people who would know in absolutes. I accept. I understand. I will not give in, give up, or give way. That's what courage means. That's what fighting means. And they will help. They are helping. For that I am grateful.

But yeah... feelings.

I need a Klonopin and a cat cuddle.
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My physician called me to go over the list of questions that the disability lawyer sent her, and we answered them together, and yeah, it's bad. I don't know what else the SSDI people will want, but I think between all this documentation, I'll appear intensely miserable, mostly incompetent, and screwed up on a daily basis, which is just the truth. I mean, sometimes walking five minutes to and from the mailbox or bus stop leaves me dizzy and achy on most days, and that is sad.

She wrote so many "[patient can barely do this]" and "[patient cannot do that at all]" and "[patient can only do that for so long]" and "[patient needs an unnatural amount of rest]" answers that it seemed like every single answer translated to "Patient is a debilitated mess." Even the questions about emotional and mental competence were negative. My memory blanks out too much, I often stammer and slur while speaking, I lose words too often, and I am in tears almost all the time wishing it wasn't my life.

(It's the losing words that hurts the most; I find myself resorting to Buffyspeak via TV Tropes too often. It's getting to the point where I almost hyperventilate when I forget the proper words, especially because I've always been a natural writer. While we were speaking, I found myself pausing, stumbling over my tongue, physically struggling for words that were so easy.
And people look at me and see nothing wrong, just a tired pale girl who limps and twitches a lot and looks like she hurts but probably doesn't because she seems fine even when she has a cane. But my doctor knows to look deeper; every time we see each other her eyes immediately fill with sympathy.)

My doctor called me "Sweetheart" and "Dear" and wished me a good weekend despite the migraine, and she told me that I was one of her dearest patients and she really wished she could do everything to help me; and her compassion and made me choke up a little. Having your primary care doctor love you and want to help you as much as possible... I feel like it is so rare.

It is actually one hundred degrees outside. That is not helping me. It's not helping anybody anywhere, either.
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You know... my mother constantly asks me why on Earth I like to talk online with people I haven't met, to bare my soul and discuss personal things over an internet fraught with dangers.
I think today have learned precisely why, after conversing with an LJ friend about disabilities and keeping a sense of humor and side-eyeing the insanity of it all: I feel better. I feel so much better being able to talk about things without listening to myself choke up or stammer, to be able to take my time to get the words all proper.
It is a wonderful, soothing, comfortable feeling. I'm not yelling to all the internet around the world, I'm quietly conversing in someone's simple corner, in a blog, in a safe space, and it doesn't matter if I have not met them in person or talked to them personally (audio and video recordings will let me see and hear them, although of course it's not the same).
I am a young adult in a time of Babcom turned real, of the power to reach across the country or the world in seconds and soothe a soul and be soothed in return. Even if I cannot truly explain it, I know that I love it. And if it were not for social networks on the internet, I would not have many of the friends I have now, in person; and maybe that is slightly pathetic, but I am not the type of person who can just make friends walking down a street or taking a class or interacting in a crowd.
I also do not like to play characters for the sake of online anonymity. I want to be myself, playing a version of myself that is socially strong without revealing everything. I want to make sure that these internet people I talk to know that this is me, just a little more social and open, because somehow, strangely, inexplicably, I tend to trust them after reading their blogs and communicating with them long enough. It is too much to put into detailed words. I understand why my mother feels concerned and skeptical. But sometimes, feelings have no words.
I know people of my parents' generation are still wrapping their heads around the light speed communication powers at hand. But I never feel as though I can aptly explain this importance without tripping over myself. I can't say exactly why or how. I just know. I just know, deep down, that this is good, in small doses. It helps me connect. It helps me speak out. It helps me touch lives and hearts and spirits, who in turn touch mine and so many others.
I hope this makes sense. It is almost too empathic for explanatory details.
brightrosefox: (Default)
My Temporal Lobe Epileptic Psyche Is Trippy.
When I go through the looking glass, fall down the rabbit hole, and enter the Wonderland of my seizures, my name is Annalira, or Annie.
My guide is Alicia, who has been there for my entire life. She speaks softly and helps me navigate through shimmering warping labyrinths of psychic storms. Her hands are soft, her blonde hair is sleek, her blue eyes remind me of a calm summer sky. I cannot break free without her help. She makes the forests move aside for clear paths and she warns the various Creatures to act pleasant or stay away.
She always holds my hand, and when we touch we pass light and power between us. Sometimes it is our only source of light beyond the storms and lightning above in the dark gray violet sky.
Sometimes she tells me to run, when I hear Something galloping behind us, Something with claws and scales. Sometimes I cry, and she tells me that soon we will be out of Wonderland and she will hand me over to Serena, my other guide, for comfort. Sometimes, if my wave my hands properly, magic leaps from me and things move so I can run faster. I don't breathe much, I just run.
Eventually, we reach the rabbit tunnel and Alicia moves us too quickly to feel. We see the shimmering wall of glass and Alicia yells at me to go, and shoves me through the glass.
On the other side is a woman with coffee hair, alabaster skin, teal eyes, and ruby lips. She pulls me into her arms and moves backwards, pressing my cheek to her breastbone. Gently, Serena begins to hum, and then to sing, a low mezzo soprano lullaby that vibrates through my body and my brain.
Gratefully, I release the breath I had been holding, at which point I feel myself leaving the seizure, and in the real world I gasp for air and struggle to feel my body again. Somehow, somewhere deep inside, Serena and Alicia know I am safe and they sigh with relief, and it feels like a cool breeze weaving through the deepest part of my psyche.

*Note: This story has nothing to do with anything. I just felt like writing it.
brightrosefox: (Default)
I think my disability lawyer's assistants are getting used to me calling in to report seizures and seizure-related incidents, but this will be a new one:
"Complex partial seizure with immediate secondary generalized tonic clonic seizure caused by a severe anxiety attack following extreme emotional distress, resulting in falling off a couch in full tonic clonic phases, followed by memory gaps and intense mental fog. Possibly with physical brusing or minor damage. Seizure lasted approximately two to three minutes."
Now that's one for the record books. I haven't had a tonic clonic in a long time. I need to be under serious, massive, intense, extreme stress for that to happen.
I don't exactly recall what happened, but it involved me involuntarily screaming at someone over the phone. I think there was a Facebook argument and I unintentionally delivered a cheap shot at one asshole to counter his shots, and then he called Adam and demanded that Adam control me or something. Fuck, I don't remember, and I'm not going to go look, that would just make me sad and tired and annoyed. I apologized for the cheap shot, but not for trying to stand up.
As Adam said, every time I try to really assert myself and stand up and be a bitch, part of my brain starts collapsing. I need to work on that.
I need a nap. Adam just gave me an ice cream sandwich. That'll work too.
Mostly, though, I need a nap. I feel so drained that I'm almost seeing in grayscale.
Besides, tomorrow I have a girl's day out with Beca; we're going to go to Ulta and I'm gonna get my hair dyed with Redken Chromatics 4Gm Gold/Mocha Medium Brown - which is fairly close to my natural shade. Also, having someone expertly massage my scalp is one of the greatest relaxation techniques ever.
Now I just need to stop crying like the world is dying. Maybe a Klonopin is in order. And some stretching. And cat cuddlings. And husband cuddlings.
Mm, cuddles.
brightrosefox: (Default)
I think my disability lawyer's assistants are getting used to me calling in to report seizures and seizure-related incidents, but this will be a new one:
"Complex partial seizure with immediate secondary generalized tonic clonic seizure caused by a severe anxiety attack following extreme emotional distress, resulting in falling off a couch in full tonic clonic phases, followed by memory gaps and intense mental fog. Possibly with physical brusing or minor damage. Seizure lasted approximately two to three minutes."
Now that's one for the record books. I haven't had a tonic clonic in a long time. I need to be under serious, massive, intense, extreme stress for that to happen.
I don't exactly recall what happened, but it involved me involuntarily screaming at someone over the phone. I think there was a Facebook argument and I unintentionally delivered a cheap shot at one asshole to counter his shots, and then he called Adam and demanded that Adam control me or something. Fuck, I don't remember, and I'm not going to go look, that would just make me sad and tired and annoyed. I apologized for the cheap shot, but not for trying to stand up.
As Adam said, every time I try to really assert myself and stand up and be a bitch, part of my brain starts collapsing. I need to work on that.
I need a nap. Adam just gave me an ice cream sandwich. That'll work too.
Mostly, though, I need a nap. I feel so drained that I'm almost seeing in grayscale.
Besides, tomorrow I have a girl's day out with Beca; we're going to go to Ulta and I'm gonna get my hair dyed with Redken Chromatics 4Gm Gold/Mocha Medium Brown - which is fairly close to my natural shade. Also, having someone expertly massage my scalp is one of the greatest relaxation techniques ever.
Now I just need to stop crying like the world is dying. Maybe a Klonopin is in order. And some stretching. And cat cuddlings. And husband cuddlings.
Mm, cuddles.
brightrosefox: (Default)
I think my disability lawyer's assistants are getting used to me calling in to report seizures and seizure-related incidents, but this will be a new one:
"Complex partial seizure with immediate secondary generalized tonic clonic seizure caused by a severe anxiety attack following extreme emotional distress, resulting in falling off a couch in full tonic clonic phases, followed by memory gaps and intense mental fog. Possibly with physical brusing or minor damage. Seizure lasted approximately two to three minutes."
Now that's one for the record books. I haven't had a tonic clonic in a long time. I need to be under serious, massive, intense, extreme stress for that to happen.
I don't exactly recall what happened, but it involved me involuntarily screaming at someone over the phone. I think there was a Facebook argument and I unintentionally delivered a cheap shot at one asshole to counter his shots, and then he called Adam and demanded that Adam control me or something. Fuck, I don't remember, and I'm not going to go look, that would just make me sad and tired and annoyed. I apologized for the cheap shot, but not for trying to stand up.
As Adam said, every time I try to really assert myself and stand up and be a bitch, part of my brain starts collapsing. I need to work on that.
I need a nap. Adam just gave me an ice cream sandwich. That'll work too.
Mostly, though, I need a nap. I feel so drained that I'm almost seeing in grayscale.
Besides, tomorrow I have a girl's day out with Beca; we're going to go to Ulta and I'm gonna get my hair dyed with Redken Chromatics 4Gm Gold/Mocha Medium Brown - which is fairly close to my natural shade. Also, having someone expertly massage my scalp is one of the greatest relaxation techniques ever.
Now I just need to stop crying like the world is dying. Maybe a Klonopin is in order. And some stretching. And cat cuddlings. And husband cuddlings.
Mm, cuddles.
brightrosefox: (Default)
I think my disability lawyer's assistants are getting used to me calling in to report seizures and seizure-related incidents, but this will be a new one:
"Complex partial seizure with immediate secondary generalized tonic clonic seizure caused by a severe anxiety attack following extreme emotional distress, resulting in falling off a couch in full tonic clonic phases, followed by memory gaps and intense mental fog. Possibly with physical brusing or minor damage. Seizure lasted approximately two to three minutes."
Now that's one for the record books. I haven't had a tonic clonic in a long time. I need to be under serious, massive, intense, extreme stress for that to happen.
I don't exactly recall what happened, but it involved me involuntarily screaming at someone over the phone. I think there was a Facebook argument and I unintentionally delivered a cheap shot at one asshole to counter his shots, and then he called Adam and demanded that Adam control me or something. Fuck, I don't remember, and I'm not going to go look, that would just make me sad and tired and annoyed. I apologized for the cheap shot, but not for trying to stand up.
As Adam said, every time I try to really assert myself and stand up and be a bitch, part of my brain starts collapsing. I need to work on that.
I need a nap. Adam just gave me an ice cream sandwich. That'll work too.
Mostly, though, I need a nap. I feel so drained that I'm almost seeing in grayscale.
Besides, tomorrow I have a girl's day out with Beca; we're going to go to Ulta and I'm gonna get my hair dyed with Redken Chromatics 4Gm Gold/Mocha Medium Brown - which is fairly close to my natural shade. Also, having someone expertly massage my scalp is one of the greatest relaxation techniques ever.
Now I just need to stop crying like the world is dying. Maybe a Klonopin is in order. And some stretching. And cat cuddlings. And husband cuddlings.
Mm, cuddles.
brightrosefox: (Default)
A while back, I was asked why I prefer helichrysum oil in my skin care. It's costly, it's rare, and it doesn't have the prettiest fragrance. But it packs a fucking punch. (Also, it works so well with tamanu and sea buckthorn to smooth out scars and blemishes that it makes me weep.)
http://www.naturesgift.com/HelichrysumHealing.htm

My current favorite helichrysum-infused products that give me the best emotional reactions:
http://www.mslavenda.com/eye%20treatment%20cream.htm
http://www.gardenofwisdom.com/catalog/item/6477925/7317759.htm
http://www.etsy.com/listing/74842908/everlasting-superfruit-rich-natural
http://www.skinoflife.com/products/5-scar-reducing-face-cream-4-oz.aspx
http://www.justnaturalskincare.com/9/creams/-face-lotions.html

I would add another Etsy product but it's not up yet. It is, sort of, but in a smaller size. The larger size will be avaiable soon. I helped create the product my very self. It's amazing. It's here:
http://www.etsy.com/listing/74968961/omni-nutrient-moisture-creme-organic?ref=pr_shop

Also, as far as aromatherapy goes, helichrysum is one of the best when it comes to emotional and spiritual therapy. It's like if a precious gemstone were a flower extract.
http://www.aromathyme.com/helichrysum-essential-oil.htm
http://www.anandaapothecary.com/aromatherapy-essential-oils/helichrysum-essential-oil.html
http://amrita.net/helichrysumitalicum.aspx
http://www.experience-essential-oils.com/helichrysum-oil.html
http://www.florapathics.com/blog/helichrysum-oil-and-its-amazing-ability-to-heal-and-diminish-scarring/
http://www.butterflyexpressions.org/Singles/Helichrysum.html
brightrosefox: (Default)
A while back, I was asked why I prefer helichrysum oil in my skin care. It's costly, it's rare, and it doesn't have the prettiest fragrance. But it packs a fucking punch. (Also, it works so well with tamanu and sea buckthorn to smooth out scars and blemishes that it makes me weep.)
http://www.naturesgift.com/HelichrysumHealing.htm

My current favorite helichrysum-infused products that give me the best emotional reactions:
http://www.mslavenda.com/eye%20treatment%20cream.htm
http://www.gardenofwisdom.com/catalog/item/6477925/7317759.htm
http://www.etsy.com/listing/74842908/everlasting-superfruit-rich-natural
http://www.skinoflife.com/products/5-scar-reducing-face-cream-4-oz.aspx
http://www.justnaturalskincare.com/9/creams/-face-lotions.html

I would add another Etsy product but it's not up yet. It is, sort of, but in a smaller size. The larger size will be avaiable soon. I helped create the product my very self. It's amazing. It's here:
http://www.etsy.com/listing/74968961/omni-nutrient-moisture-creme-organic?ref=pr_shop

Also, as far as aromatherapy goes, helichrysum is one of the best when it comes to emotional and spiritual therapy. It's like if a precious gemstone were a flower extract.
http://www.aromathyme.com/helichrysum-essential-oil.htm
http://www.anandaapothecary.com/aromatherapy-essential-oils/helichrysum-essential-oil.html
http://amrita.net/helichrysumitalicum.aspx
http://www.experience-essential-oils.com/helichrysum-oil.html
http://www.florapathics.com/blog/helichrysum-oil-and-its-amazing-ability-to-heal-and-diminish-scarring/
http://www.butterflyexpressions.org/Singles/Helichrysum.html
brightrosefox: (Default)
A while back, I was asked why I prefer helichrysum oil in my skin care. It's costly, it's rare, and it doesn't have the prettiest fragrance. But it packs a fucking punch. (Also, it works so well with tamanu and sea buckthorn to smooth out scars and blemishes that it makes me weep.)
http://www.naturesgift.com/HelichrysumHealing.htm

My current favorite helichrysum-infused products that give me the best emotional reactions:
http://www.mslavenda.com/eye%20treatment%20cream.htm
http://www.gardenofwisdom.com/catalog/item/6477925/7317759.htm
http://www.etsy.com/listing/74842908/everlasting-superfruit-rich-natural
http://www.skinoflife.com/products/5-scar-reducing-face-cream-4-oz.aspx
http://www.justnaturalskincare.com/9/creams/-face-lotions.html

I would add another Etsy product but it's not up yet. It is, sort of, but in a smaller size. The larger size will be avaiable soon. I helped create the product my very self. It's amazing. It's here:
http://www.etsy.com/listing/74968961/omni-nutrient-moisture-creme-organic?ref=pr_shop

Also, as far as aromatherapy goes, helichrysum is one of the best when it comes to emotional and spiritual therapy. It's like if a precious gemstone were a flower extract.
http://www.aromathyme.com/helichrysum-essential-oil.htm
http://www.anandaapothecary.com/aromatherapy-essential-oils/helichrysum-essential-oil.html
http://amrita.net/helichrysumitalicum.aspx
http://www.experience-essential-oils.com/helichrysum-oil.html
http://www.florapathics.com/blog/helichrysum-oil-and-its-amazing-ability-to-heal-and-diminish-scarring/
http://www.butterflyexpressions.org/Singles/Helichrysum.html
brightrosefox: (Default)
A while back, I was asked why I prefer helichrysum oil in my skin care. It's costly, it's rare, and it doesn't have the prettiest fragrance. But it packs a fucking punch. (Also, it works so well with tamanu and sea buckthorn to smooth out scars and blemishes that it makes me weep.)
http://www.naturesgift.com/HelichrysumHealing.htm

My current favorite helichrysum-infused products that give me the best emotional reactions:
http://www.mslavenda.com/eye%20treatment%20cream.htm
http://www.gardenofwisdom.com/catalog/item/6477925/7317759.htm
http://www.etsy.com/listing/74842908/everlasting-superfruit-rich-natural
http://www.skinoflife.com/products/5-scar-reducing-face-cream-4-oz.aspx
http://www.justnaturalskincare.com/9/creams/-face-lotions.html

I would add another Etsy product but it's not up yet. It is, sort of, but in a smaller size. The larger size will be avaiable soon. I helped create the product my very self. It's amazing. It's here:
http://www.etsy.com/listing/74968961/omni-nutrient-moisture-creme-organic?ref=pr_shop

Also, as far as aromatherapy goes, helichrysum is one of the best when it comes to emotional and spiritual therapy. It's like if a precious gemstone were a flower extract.
http://www.aromathyme.com/helichrysum-essential-oil.htm
http://www.anandaapothecary.com/aromatherapy-essential-oils/helichrysum-essential-oil.html
http://amrita.net/helichrysumitalicum.aspx
http://www.experience-essential-oils.com/helichrysum-oil.html
http://www.florapathics.com/blog/helichrysum-oil-and-its-amazing-ability-to-heal-and-diminish-scarring/
http://www.butterflyexpressions.org/Singles/Helichrysum.html

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