brightrosefox: (Default)
Because I can never recall the actual daily Pain and pain relieving supplements off the top of my head that I personally take:
MSM, Pau D'Arco, Sangre de Drago, Sea Buckthorn, Vinpocetine, Nymphaea Caerulea, Serrapeptase, Noni extract, Mangosteen extract, Cayenne extract, Kava extract, Passionflower, Ashwagandha, L-Tyrosine.
There we go!

(Disclaimer: My body is not your body. My pain is not your pain. My chemistry is not your chemistry. My neurology is not your neurology. Your mileage may vary.
If you choose to research these supplements, and especially if you choose to take any of these supplements be reasonable, rational, and cautious. These supplements may not work for you the way they work for me. They may not work at all.
If you wish to purchase and test any of these supplements, I suggest the following websites: SwansonVitamins.com, Vitacost.com, PuritansPride.com, which all make quality products that I trust. I am not responsible for anything except what I type and say.
Please do not ask me simple questions that Google can answer, such as "What does this/that supplement do and how and why?" If you are unable to do a Google search, tell me why and I shall provide links. However, I am not a medical practitioner and I only study holistic medicine as a hobby. I do not know everything. It is your responsibility to do your own research and make your own decisions. However, I am happy to answer questions about how these supplements have worked with me, why, how, etc. Please holistically drug yourself responsibly.)
brightrosefox: (Default)
So, stuff.
My body and brain have been up and down in normal chronic pain ways, and now that I'm medically on the autism spectrum with Nonverbal Learning Disability, my doctors and therapists can focus on more specific treatments for the sensory and communication issues, and I no longer feel I need to justify why I do so many weird and fucked up things that make people angry. I'm not gonna use any of my disabilities as an excuse, because I find that revolting, but I will merely say, "Look, I'm super neurodiverse and I have issues, so just hang on a minute while I get my brain in order, okay?" I don't think I have ever been neuro-typical.

I've been venting on Facebook more than LiveJournal, which i find backwards, but I have so many friends on Facebook who are immediate and who know exactly how it is. I refuse to leave Livejournal, since it has been my home since late 2001, so I plan on writing here more and more, copying between here and Facebook.

So, I have been in a major depression episode for several weeks now. It has been quiet and lurking, like a huge tar pit, and every so often a creature rises with flashing claws and strikes and I break down and my insides begin screaming. It happened last night, while Adam and I were eating the rabbit stew he had slow-cooked. I randomly, suddenly began sobbing in heaves into a napkin, and Adam placed his hand on the back of my head gently - it's a gesture he does to Mikey to let Mikey know he is there and to guide Mikey in his blindness, and he's been doing it with me ever since we met. Adam began massaging my neck and shoulders, and then I began gasping and rasping "I'm sorry, I'm so sorry, I'm so so sorry..." and Adam asked "Why?" and I gestured violently at my body and rasped, "THIS. I just... I just... I can't. I fucking can't. I can't even eat a whole meal with out..." and I sobbed again and he held me and held me, and I cried about how broken I was and that i was a horrible housewife and how I couldn't do the things he needed me to do sometimes, and he said, "Honey, it's okay. You are so important. You pay our bills, you make the appointments, you keep the house from exploding, you remind me to take of myself. I bring in the money. I may break my back doing it, but you're already broken and it isn't anything you did, and that's okay. It's all okay. Everything is okay. I love you."
We had moved to the couch, and I cried and cried while he held me, and Jupiter came over and sat like a sphinx on us and purred with his entire body and we pet him and scritched him, and the creature in my brain faded.

Adam needed to wake up around five in order to go to his IT/AV shop in Virginia and then to New York for a job overnight. We went upstairs and prepared his luggage and had sex that comforted me and made me happy with the afterglow jokes, and then later, Luna came over in one of her precious rare moments and settled between us on a small pillow to purr us to sleep.

I still have this weird lump in my throat from... so many things. I still need to print out that form that my new psychologist needs for insurance and such, and on Friday, our second appointment, we may try hypnotherapy. I'll tell her about the spectrum thing just so she keeps it in mind. I think we'll get along just find.

I sent back the forms to get Medicare Part B, and once I'm enrolled at the end of the year, I shall enroll in Part C with Aetna, and then things should be cheaper for me. Next week will be the dentist and then the pain physician.

I still need to eat more.

And then... and then, there is this. Found and shown to me by the magnificent [livejournal.com profile] naamah_darling, it is the absolute ultimate expression of what I've been calling The Spear Theory (as opposed to the spoon theory).

Always. Forever. I am my shield and these are my spears. Because spoons can only do so much. The spear theory leaves me scarred and shattered and covered in the blood of my pain monsters. And after I recover and refresh there is a new set of shiny spears waiting to be hurled, broken, stuck in the bodies of my pain monsters, and repeat.
And as I rest and recover, spoons are there to help feed and nourish. But there will always be more spears.
I am a pain warrior. A warrior in an old way.
http://internal-acceptance-movement.tumblr.com/post/61136577036

And Naamah's thoughts:
http://naamah-darling.livejournal.com/633319.html

It is too perfect.
brightrosefox: (Default)
The Facebook status post that started it all. Read the comments. They are extraordinary.
https://www.facebook.com/BrightLotusMoon/posts/10151585193220684

So, lately I have been seeing a whole bunch of bizarre, confusing Internet Things about Finding A Cure For Cerebral Palsy, in the same fashion of Finding A Cure For Autism.
What is even worse is that I see people trying to compare autism to cancer when talking about cures, which is so fucked up I have no words.
So, as a person with cerebral palsy and various other disabilities, including one that shares similarities with autism, I have thinky thoughts.
(And no, Fibromyalgia is not included in this, since it is a different rant entirely, so I will not bring it up. I am only and specifically going to talk about Cerebral Palsy and Autism Spectrum Disorders here, which I cannot and will not compare to conditions like epilepsy or diabetes or autoimmune diseases or such.)

This is what I find so funny about people who yell about finding a cure for neurological conditions like autism and cerebral palsy. A "cure" generally means wiping out or eradicating a harmful disease. *checks self* Except that I'm not dying. All the autistic and cerebral palsy-affected friends I have aren't dying. I know this is weird logic. I know that "cure" has many other definitions. But I don't have a disease and I don't want a cure.
When someone says, "There must be a cure, [condition] is terrible, just ask [my friends with disabled kids who are having issues interacting]!"... I have to wonder, do they want the cure for the disabled people, or do they want the cure for themselves, so they can breathe easier knowing that the disabled people will fit cleanly into a neurotypical world? Oh, I know, I am going to incite some anger here.

I've seen how hard and horrifying it can be for families of autistic people and people with cerebral palsy when the families have no idea what to do and feel helpless and hopeless. I have cerebral palsy, I have family and friends with cerebral palsy, and I have several cousins and many friends with autism. But the old argument of "Just ask So-And-So whose child will never talk, etc" does nothing to tug at my heartstrings. I find it to be a very weak argument.
Yes, disabilities suck. Disabilities are fucking hard. They eat away at you. They fill you with guilt and worry and fear. But you know what? I'm not dying. I am strong as hell. I am hardcore. And this disability that people seem to fear and hate? It has given me some specifically amazing, beautiful perspectives on the world that I'm not sure those people have.

Let's ask the actual disabled people if they want cures. Come on, ask us.
Many of us might actually say yes. Many of us might firmly say no. Many people might decide they want to be treated or "improved" just enough to be able to interact better, walk better, have thorough conversations, etc. If they want cures, awesome. If they don't, awesome. But I feel as though certain charities and groups championing to "wipe out Insert Disability Here don't often take into account the actual opinions of the majority of people with those disabilities. Because yes, while it is all we have ever known and a cure may make us feel better, it would also remove a core part of who we are, something so hard-wired into our brains that we live and work with it in a sort of surreal harmony. We may bitch about symptoms, we will get pissed off at ourselves, we will lash out on bad days. Eradicating that entire condition may make it seem as though we would be better off, happier, easier to be around. But we don't know that. What if we don't like it? I don't know. Nobody knows.
In the end, we have our own voices, and it has become apparent that we need to start drowning out the voices of people who don't understand us enough from the inside. I am speaking out. I don't want to be cured from any of my disabilities. Treated, yes. Slowly healed to make myself function better, yes. Able to fully manage symptoms, yes. But a cure? An absolute cure? No thank you.

And remember: Having a cure as an option for everything would be awesome. But I refuse to tolerate it being forced upon someone or used as a soapbox for someone's rant as to why it should be given to everyone even if they don't want it.

And those are my thinky thoughts.

/I hate writing controversial posts like this, but, well, nobody I know right now wants to actually be cured. Show me some disabled people who personally want a real honest cure, and then I'll say, "Okay, awesome! Let's start scienceing! Let's get to work! Then we can have the option! Yay science!" I'm open to everything. Just not being told that my disability absolutely needs a cure for the sake of the people who are not disabled.

Also, I must copy a comment a friend on my Facebook that made me melt:
"And this is why you are one of my favorite disability advocates, because no one else calls those kind of campaigns what they are: patronizing. Well meaning, but patronizing. As a fairly high-functioning Aspie, and someone who's dealt severe OCD, anxiety and depression as long as I can remember, I would not take a magic pill that eliminated my experience with these disorders for a million dollars. Yes, the symptoms suck and I have and will continue to manage them with a combination of holistic and allopathic treatment options, but to completely erase them? No. Each one has shaped who I am, and I happen to like that person. Thank you for voicing this."
brightrosefox: (Default)
Note: Seizure.
Dreamstate. Melting clocks, supernovas, galaxies whirling like pinwheels.
The looking glass shattered when I fell through. Alicia my guide held me tight and whispered, hoarsely, "Those hands of time and space will not move unless you stop watching."
The melting clocks began to burn.
Alicia was screaming for Amara to come get me. Wonderland looked like a rainforest on LSD.
Amara slid her cool hand into mine and said, "Neurology is hell, and then you live."
I was wrapped in a silk cocoon, shoved through a broken cracked pathway of shorted neurons and synapses. Amara was with me. When we broke through, I heard Serena say, "I'll take her now. Thank you, sister." And I heard a kitten purring so loudly it made me vibrate, and I felt pure comfort. I managed to mumble, "I need Amber to wrap me in safe." But it had already been done.
I love my spirit guardians, also known as my human-shaped coping mechanisms, also known as my creations with minds of their own, also known as awesome psychological methods.

In a discussion with Naamah yesterday, she referred to me as "so inscrutable zen-master... really at peace with the fact that sometimes, things don't make sense... and don't need to." I used to quote Chang Tzu without knowing it was Chang Tzu: "Use understanding to understand what can be understood with understanding, and then stop." and when people asked, "Wait, how many 'understandings' are in there?" I would reply, "Yes, exactly."
And so Naamah suggested that if Serena had a companion, it would have to be a little koi-colored calico cat named Koan. Today, my mind remembered that and ran with it, constructing a six-month-old calico kitten with koi patterning, named Koan. And she will be infinitely gentle, patient, and a deep lover of head-butts, cheek nuzzling, face licking, lap sleeping, and Being There When I Need Her.


I'm back in reality. I must rest now. Hi. I believe the seizure lasted approximately two minutes. I can type, with exhaustion, but reading is becoming fatiguing. I will do things to recover. Yes.
brightrosefox: (Default)
In the past week, I have learned some fascinating things about cerebral palsy that I honestly never knew and which truly puts many things into perspective.

1. We tend to exert more energy than others - around 3 to 5 percent daily.
2. We tend to have higher, faster metabolisms. For some, this can lead to clinical, neurological "nervous loss of appetite" - not always the eating disorder, but an actual screw-up between signals being sent between the brain and the stomach. Some of us do develop eating disorders at some point in our lives.
3. 75 percent of us will lose our ability to walk by age 25, or at least we will begin a slow decline, and of that percent, most of us will need walking assistance devices such as canes, no matter how mild the cerebral palsy.
4. After age 30, most of us will begin to rapidly decline physically, neurologically, physiologically, and psychiatrically. Our neuromuscular and musculoskeletal systems will quietly suffer and lead to conditions like fibromyalgia, arthritis, neuralgia, migraines, TMJ, sciatica, seizures, sleep problems, and breakdowns of connective tissues.
5. A vast percentage of us have clinical depression, anxiety disorders, bipolar, and other major mental illnesses.
6. A huge percentage of us have sensory processing disorders, spatial relation difficulties, and memory problems that can get worse after age 30.
7. Even the most mild cases of CP may wind up needing permanent care and assistance by age 60.
8. No amount of exercise, yoga, dietary changes, nutritional boosts, positive thinking, holistic treatments, or pharmaceutical treatments can completely slow the progression of syndromes and disorders comorbidly associated with cerebral palsy. While the damage done is static and non-progressive, the repercussions from that damage will continue to affect the brain and body for the rest of the patient's life. It is not our fault, we cannot and must not fee guilty or ashamed, and we must learn that it is completely all right to ask for help.

***

Excuse me, I need to go cry quietly for a while.
You know my phone number if you wanna call and chat. If not, and you wanna chat, message me. I'll probably be crying.
brightrosefox: (Default)
I must quote this, because it struck me deeply and knocked me over and stunned me and amazed me.

*****
From: [livejournal.com profile] 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.
brightrosefox: (Default)
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?

jowitchzen2

Maybe it was the super moon. Maybe it is the heat from the sun now. Maybe it is anything.
brightrosefox: (Default)
Well, now that I've learned how to properly pronounce "Hypoxic-ischemic encephalopathy" I can do more thorough research into how the brain lesions from periventricular leukomalacia damaged those particular sections of my brain.
As cerebral palsy is a static encephalopathy, yet always comes with co-morbid and co-existing disorders that are progressive, cerebral palsy can sometimes be confused with a disease that progresses. But no. The damage has already been done and cannot change. However, the extent of that damage can spawn syndromes and conditions over the years that can still cause permanent and progressive damage to the brain and the body. Which basically means that I get to smack anyone upside the head who insists that I can be completely cured. Because it's funny.

Also, this is accurate:
**
Periventricular leukomalacia (PVL) is a type of brain damage that involves the periventricular white matter of the brain. Damage to white matter results in the death and decay of injured cells, leaving empty areas in the brain — called lateral ventricles, which fill with fluid (a condition called leukomalacia).
The brain primarily consists of white matter and gray matter. Gray matter has neural cell bodies, which can initiate nerve impulses, while white matter transports impulses between gray matter cells. The periventricular white matter that surrounds two horseshoe shaped cavities in the brain is primarily responsible for the transmission of nerve impulses that control motor function. Damage in this area can result in spasticity and intellectual impairment.
Myelin is an integral component of white matter that coats and essentially insulates cell pathways, promoting speedy transmission of nerve impulses. Damage to myelin slows and impedes nerve transmission, possibly impairing brain function.
Approximately 60-100% of infants with periventricular leukomalacia are diagnosed with cerebral palsy. Four to 26% of premature infants placed in neonatal intensive care units have cerebral palsy. In severe cases, postmortem examinations have discovered that 75% of premature infants who died shortly after birth had periventricular leukomalacia.
Experts believe intrauterine infections are the underlying factor for periventricular leukomalacia. Membranes around the fetus are affected by the release of toxins, which travel through amniotic fluid to selectively injure areas of the developing brain. These toxins can also cause premature rupture of the membranes and premature birth.
**

In conclusion: Whenever someone thinks they're insulting me by telling me I am brain-damaged, I always say "Thank you! I am brain damaged! I'm impressed you noticed!" Which confuses them so much that they just stop talking altogether. And then I feel happy.

SCIENCE!

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.
brightrosefox: (Default)
Call me Courage.
It takes a lot of strength to talk about life like this.

So, I just "woke up" splayed uncomfortably in my comfortable leather task chair, head lolled to the right, mouth open and drooling, left side full of hemiplegic hypertonic hemiparesis, right side spasming in its own way, brain stuffed with cotton, voices inside me screaming "GET UP, GET UP, OPEN YOUR EYES, DO IT NOW. JOANNA! WAKE UP!" Voices I recognized as Alicia, Serena, Amara, and Amber - all four of my spirit guides, aka healthy multiplicity selves, aka characters I created long ago that took on lives of their own deep inside my damaged brain. I have never, ever heard them in chorus. I felt something like a massive SHOVE - very similar to a hypnic jerk, which is actually extremely common during testings for epilepsy. Hypnic jerks, also known as hypnogogic jerks, night starts, and sleep starts, are those weird sensations you get between deep sleep and waking when you suddenly feel as though you have fallen onto your own bed from high above.
There was no panic in those cries, simply intensity. They were all desperate to bring me around. See, Alicia is the one who guides me through the seizures and brings me to Serena, who guides me though the pain. If needed, Amara steps forth to ease the anxiety, panic, and fear. And although Amber has kept silent and hidden for decades, Amber is the one who soothes my entire soul and my entire consciousness with a blend of magics and quantum physics that I still cannot translate into common words. However, they have always been separate and individual. The only ones who have ever communicated in any way have been Alicia and Serena, if only to pass me between each other with nods and whispers.
And so I awoke, or came out of the seizure, twisted and deeply exhausted from cerebral palsy complexities, compounded by fibromyalgia, sensory processing disorder, synesthesia, and hypersensitivity. For several agonizing moments, I did not know where I was - and the only reason I knew my own self was because the Guides poured all my memories quickly into my mind, into the live, non-damaged bits of my brain. I know that doesn't make any real medical neurological sense, but I cannot explain it any other way. The only reason I am typing this up is because my hands are moving of their own accord. I have a silly feeling that Serena and Amber might be helping me. Keep in mind that these women are not "real" - they are fictional characters. And they know it. But they are parts of my mind and have always been. I am still wracked with deep anxiety, and Amara is wrapping me in the most comforting... things? Images and sensations of fabrics. Ideas of beautiful imagery? Tiny mewling soft kittens happy and adored and warm? Anything to keep me calm and happy and anything to keep me from breaking down in screaming tears. I can feel an episode of clinical major depression creeping up on me.
And I still do not know why any of this is happening. I have lost small memories of today. I do not mourn them too much. I just want to feel better.
Can someone tell me a story, please? Any kind of story?
brightrosefox: (Default)
Because people have been asking why my voice "sometimes sounds weird when I talk for long periods of time." And why I often seem "functionally essentially unable to carry out certain tasks without being reminded step by step."
http://en.wikipedia.org/wiki/Dysarthria
http://en.wikipedia.org/wiki/Ideational_apraxia
http://en.wikipedia.org/wiki/Cerebellar_ataxia
http://en.wikipedia.org/wiki/Expressive_aphasia (after seizures and severe exhaustion of varying kinds, especially if the fatigue is accompanied by severe spasticity and hemiparesis with hemiplegia.)
http://en.wikipedia.org/wiki/Cerebral_palsy
Cerebral palsy is funny like that...

Also.
Why, hello, thunderstorm.
Why, hello, anxiety attacks and seizure threats and fibromyalgia flare and combined migraine-tension headaches and knee swelling and ulnar nerve entrapment pain.
Why, hello, Klonopin and Ultram and Baclofen and Codeine.
Why, hello, gemstone jewelry that acts like worry stones.
Why, hello, intense deep breathing qi gong meditative exercises
Sometimes you just have to fight dirty with advanced weaponry, you know?
brightrosefox: (Default)
So. I talk a lot about fibromyalgia, often about epilepsy, occasionally about cerebral palsy. I don't talk enough about how the minutiae and tiny complexities of cerebral palsy affect me on a daily basis, because there is so much to talk about with so much to explain, and not even my husband gets everything - in fact, since his brain works too quickly for... well, everything, my brain is slightly illogical, very odd to him. Only my mother and father understand Joanna's Brain. I mean that literally. Someone could insist that they know how I work, but they actually cannot, they are literally unable to figure me out unless they observed me very closely as I grew.
Now. The thing that seems to puzzle people most about my brain is that I have trouble making easy connections between what I see and hear and feel, and what is observed and perceived. It is why I am a terrible housewife. It's why I don't clean the house as often as I should. It's why I forget to do things, why I get scolded, why I can easily irritate people. Connections get lose very quickly and very easily. I need to see, hear, feel, understand, over and over and over. "Jo, why the hell did you do that? Jo, why the hell didn't you do that? Jo, didn't you get that? You forgot to do that! You need to do that!" - phrases I hear constantly. I act on impulse. Often, the impulse is on a childish level, where I just don't notice or understand or even care. Yes, I have OCD and ADHD Inattentive and Sensory Processing Disorder. They do contribute to how I act and react. But I can readily admit that sometimes, it is just me. Sometimes my brain happens without rhyme or reason. I may be a thirtysomething adult woman, but most of the time parts of my brain don't realize it.
Neurology is weird, isn't it?
brightrosefox: (Default)
Especially for [livejournal.com profile] naamah_darling

Here is a post for questions about my Healthy Multiplicity, and the three (now potentially four) female people/entities who inhabit my brain and help me cope with all my various vast disabilities and illnesses.
This is also a post for others to discuss their own.

-Serena: The first known guide, who guides me through all and every pain, tension, emotion, and fear, who is my inner nurse.
-Alicia: The second known guide, who guides me through epilepsy and postictal states, who is my inner mage.
-Amara: The mysterious third guide with me from birth, only recently human, who guides me through overall brain damages, memory problems, cracks in the walls, neuronal crumbling.
-Amber: the previously silent, hidden fourth guide who acts as a preserver of my sanity, who seems to catch me when I fall so deeply I fear entrapment, who deflects darker energies and turns negative into positive.

Disclaimer: This is not a case of DID, which is a very, very specific disorder. My girls do not leave my mind to use my body and voice, although there have been very rare postictal states in which Serena has spoken through me when I was fully incapacitated; however, I was still myself, just unable to articulate until she lent her voice.
Healthy Multiplicity is extremely common in perfectly healthy people. It is often seen as a form of coping mechanism for many disabled people, who need to sometimes retreat into their creative minds to preserve themselves, to soothe their mental conditions, to know that they are able and capable and strong. Because sometimes, being reassured by loved ones falls hollow, and you know your own mind well enough, and your own mind knows you well enough.
brightrosefox: (Default)
https://www.change.org/petitions/chairman-murphy-and-ranking-member-degette-stop-threatening-the-hipaa-rights-of-people-with-psychiatric-disabilities
To quote a dear friend:
"I am a fully-functioning human being, mentally ill people pose NO greater threat to society than non-mentally-ill people, and we are entitled to exactly the same protections as every other person. Do not discuss these issues without allowing mentally ill people to educate you. Do not discuss these issues until and unless you are aware that mentally ill people are more likely to be the VICTIMS of violence than the perpetrators. Inform yourselves and actually talk to the people involved. Don't bring your own preconceived ideas to the table, call them fact, and suggest policy based on them. That's inhumane AND unlawful."

And I would like to add:
There are very different types of crazy. What I call Hollywood Crazy or Hollywood Mental Illness is usually the kind that is an exaggerated version of a disorder that is seen as a danger to oneself and others. There are people out there so terrified of this that even if they are mentally ill, they will refuse to say anything because ignorant family members might see them as Hollywood Crazy (see: "I am not crazy! I have never been crazy! Don't call me crazy!" often intoned with an air of fear, upset, prejudice.) And in those minds, Hollywood Crazy might mean commitment to a ward or facility, which is often seen as a terrible thing, not a helpful healing thing. We seriously need to change how we view mental illness and mental disability. There are so many people living with a form of mental illness who absolutely refuse any sort of treatment purely out of fear of ridicule, shunning, disconnection from family, even forced unnecessary commitment to hospitals. We need to show them that the stigma is human, driven by fear that breeds hate, and that there is no shame or fear in getting some sort of treatment.

***

Dear pharmaceutical drugs: I know people hate you and think you are poison, but I just wanted to tell you that I greatly appreciate your role in saving my life.
I will always balance you with holistic remedies, allopathic medicine, and whole body treatments. But I will always be grateful for the way you have helped me feel better, and even normal, under certain standards. I am one of those people who rarely experience the various side effects listed - which really, are simply issues reported by test patients during trials, which may or may not actually affect anyone. It took me years to realize that. After all, many, many pharmaceutical drugs were initially derived and synthesized from plants, foods, and botanicals. I am not sure about recent years, but chemistry is chemistry.
I do not participate in the stigma and hate toward you. Of course, I am only speaking for myself and my personal experiences. I know so many people who really have been poisoned and "screwed up" because their chemistry reacted very badly to certain medicines, causing extreme side effects that led to even worse conditions. I cannot speak for them. But I can speak for me. And all I can do is be grateful.
One day, I will taper down until I need only very small dosages of the drugs I am taking. That may be years from now. I will still need to take certain drugs for the rest of my life However, for the time being, I am perfectly fine with the pills I take. I cannot say that for anyone else - I am not anyone else.
I am always sad when I learn that so many other patients cannot handle certain medications or become worse due to negative side effects - that is horrific.
Yet as long as no one tries to convince me personally that my life would be better if I quit all my essential medications, I will nod and agree that we take too many prescriptions as a whole, and that negative side effects can be absolutely terrifying and can lead to worse problems. I wish there were more patients like me, who are are able to handle drugs without intense side effects.
And now I shall take the supplements that I take daily, to help balance the pharmaceuticals. Because the supplements work for me. And that is a completely separate debate for another post.

Oh, hell, might as well do that post now.
Depending on who you talk to, supplements and holistic medicine and alternative remedies are either the best thing and the only thing, or absolute bullshit and placebos. And then there are those who regard supplements as exactly that - supplemental. Alternative. Balancing. No big deal.
I grew up on vitamins and supplements, only being given pharmaceuticals when necessary. Now that I need to take over half a dozen pharmaceutical pills daily, I balance them as best I can with vitamins and supplements.
There are plenty of sick patients who are physically unable to take supplements and alternative treatments, as their bodies and brains completely reject or don't respond at all to said medicines. Which is why I bristle whenever someone insists that pharmaceuticals are all poison and only supplements and natural medicines are the way to treat illness. Nobody is the same. Everybody is different. What works for me may not work for you. People don't seem to understand this. People may never understand this.

And here, I submit a full list of every single diagnosis ever made in my life, and here I submit a full list of pharmaceutical medications and supplemental medicines, stored in both my Facebook Notes section and a document in Word.

Read more... )

And now, time for the daily supplements that I take daily because they work for me.
brightrosefox: (Default)
This is weird and... funny. Mildly depressed and panicky, but also with a fast brain moving so fast that I am almost laughing hysterically. ADHD Inattentive episode maybe? Because I don't have Hyperactivity, just Daydreamer Activity, as it... hang on, shiny... what was I saying? Is that a dove? Sorry, you were saying? Oh, have you seen my kyanite pendant? Fuck, I don't know what I was about to say. Oh! As it turns out. Adam has full on Hyperactivity to the point where as a child, he was tied to a chair and the chair started vibrating. To the point where if he was running through the house and met a wall he just went through the drywall into the next room. Where he bounced off the ceiling and left sneaker-prints. It took him decades of drugs and then intense meditative techniques to keep it tampered down. He now channels it through work and art and video games. It has become an advantage - until he runs out of things to do. And suddenly our house is covered in canvases with abstract, impressionist, minimalist landscape and surrealist paintings, and stonework carved with electric drills.

Now, the funny thing is that I've got Inattentive, Over-Focused, With Anxiety, and With Depression... depending on what my brain is trying to do. For example, right now, I am having a With Anxiety episode during a major depressive episode on its own. It feels very, very weird.
http://newideas.net/different-types-adhd

So. Yes. Um. Depressive episode with ADHD Inattentive Anxiety episode? I don't know. I need to get ready for my pain specialist appointment.

Also, I need breakfast. Acai Vanilla Greek yogurt will do fine.
brightrosefox: (Default)
So, I'm not going to fully describe the four distinct simple partial seizures, the Raynaud's flare, the lumbar and sciatic spasms that literally crippled me and put me on the floor writhing, the chondromalacia patella flare that was just purely evil, the spastic hemiplegic flare that left my entire left side feeling ghost-like, the fibromyalgia burning that I compared to nerves hooked on heated barbed wire and connective tissues touching a bonfire - skin included - the sinus and jaw pain caused by my generally being irritated, the depression, the twitching anxiety.
Details are pointless. But since I am a disability advocate, I will leave this open for questions and stories and understandings and commiserations and complaints, since a huge percentage of my Friends List is disabled in some way.

My female cats are taking turns jumping on my lap and nuzzling me, occasionally preventing me from getting up. Obviously I could remove the cats from my lap at will, but I don't want to, and also they kind of dig in because they really want to hang out. Fine by me.

Although, if anyone actually wants details, please ask. You never know.
brightrosefox: (Default)
So there was a seizure. It lasted four to five minutes. I am ridiculously discombobulated and typing very slowly. Dysphasia abounds. Typing is easier than talking. Spasticity is violent. Shaking is violent. Burning, stabbing, electrifying, gnawing.
My Rose kitten was on my lap and purring and licking my face and my face. I was away. I sensed my body, arms crossed, rocking back and forth, falling back in the chair, mouth open, head to the side. I heard things. Futurama on TV, dialogue mushy. My cat purring. I felt unchained and inside a plunging elevator. I begged for Alicia. Everything was so dark. Someone took my hands, hugged me close. I glimpsed long shining blond hair I cried and yowled. I just wanted home. I felt too weak.
As I began to awaken, my first words were "Rose... Rose... kitty..." and my right arm lifted and I managed to touch her and pet her. She nuzzled my fingers. I cried and gasped.
Now the world feels so strange. I must sleep. Is it all right to sleep? I remember days, weeks, months ago... someone yelled at me and insulted me. I don't remember, I don't care. I remember minutes, hours ago... someone was talking about makeup colors to ease my panic. I was comforted, entertained. People were commiserating. I felt like a member of a powerful group. I was a warrior in the world. I am a drained tired weak sad warrior. I am covered in blood. I want to sleep.
Can I sleep?
I am a Dragon Princess, too.
I can't remember the episode; only cool, velvet darkness, and a blond woman holding me. I remember breathing in cold dry air. I remember thirst. I remember crying so hard.
My skin hurts.
I am typing this with two fingers.
Can I sleep now?
My head hurts.
My soul hurts.
I am still a warrior.
Can I rest now?

I must write this down. I must, I must. I need records. This journal must know. As much as I can.
Two fingers. It hurts so much.
Those pain pills are working well. I am grateful.
I am thirsty. I am dizzy. I may crawl to bed. I have many canes. I will not crawl, not if something can hold me up.
I want a hug. A cuddle. I want someone to say, "I love you. Everything is wonderful."
Even online friends can do that. I do not care what anyone says. Some of my greatest loves are online, states away across the country, and I will never let go.
I love you. Everything is wonderful.
May I sleep now?
brightrosefox: (Default)
Double facepalm and headdesk.
I am momentarily displeased.
Just because I acknowledge my limitations for my disabilities does not mean I have given up on myself nor accepted all my weakness. Oh, people are stupid assholes. With the inspiration porn and the insistence that there are no limits etcetera. El Oh El and various expressions of mirth.

Other than that I feel wonderful. I mean, despite the fever, migraine, flares of fibromyalgia and sciatica and spasticity and anxiety, and general aches. Life happens, life is funny.

No simple "I'm so sorry please feel better" comments, please. I get it, you want to say something. You are welcome to feel sorrow for my predicaments, of course, but unless you can follow it up with insightful and inspiring sentences, it is unnecessary. Most of the time it just feels... well, unnecessary. I wish I could think up a stronger word, but the thesaurus part of my brain is slightly broken and is being mended. I am happy enough to receive "hugs" comments. But I am going to quote a friend: "Please say something actually useful to me beyond that you want to hug me." Oh, I sound crude. I suppose it happens when a brain and body won't work properly and there is only pain and irritation and frustration...
Well, this is a journal. This is my journal. It is where I journal my thoughts. Hello, thoughts.
Time for some rest, perhaps.
brightrosefox: (Default)
Some people have been asking me why I wear so many specific bracelets in varied order. It isn't because the stones are beautiful, though they are. It is for neuromuscular and sensory processing balance. See, since my left arm, affected by spastic ataxic cerebral palsy, often feels ghost-like, I wear multiple gemstone stretch bracelets to give weight to that arm, so I can feel that weight, look at my arm, and think, Oooh, pretty stones, and oh, right, I should use this arm. Raw amber, charoite, lepidolite, kyanite, tourmaline.
On my right wrist, the balancing act is more of a counterweight. The raw amber, polished amber, fluorite, and lepidolite help me concentrate on my total physicality. I am inside my mind too much. My body needs me just as much, even more.
It is the same reason I wear gemstone rings: charoite, lepidolite, seraphinite, kyanite - the gemstones that work best for me, alongside amber resin. On my left hand are my green gold wedding ring and my inherited yellow gold band. On my right hand is my heirloom engagement ring. I need balance, once again. So I wear a ring on my left index finger and two rings on my right middle finger. Balance is vital for me with my particular set of neurological damages. It helps that all these stones have metaphysical properties that work perfectly for me.

braceletsleft

braceletsright



ringsleft

I do wish my left hand would not tremble so badly, even when propped against a surface. But that is what I live with and I respect it while I seek to improve and strengthen it.
brightrosefox: (Default)
Copied and pasted here to remind myself.



Life is life, and my life is sometimes a broken life, a crippled life, a life I push through with courage.

I do not care if people accuse me of using my disabilities as identification. I don't know if the people who say that were born disabled and have been living with it forever, and even if they were, their views are not mine.

I am not a "person first" disabled person. I don't want to be. I don't even know what that means, aside from "my disability is a very negative thing that should be peripheral to who I am, something I must shun, something I must be ashamed of, something I must seek to cure permanently when that is impossible for me personally." It may be a label, but it is my label. It is as much a part of me as my being female, very short, pagan, bisexual, of Jewish heritage, having a deep love of knowledge and fantasy.
I am an individual with stuff happening to me, stuff with labels and connotations and usually offensive slurs attached that may never truly fade. This may be an unpopular opinion among certain social justice warrior circles. But I never wanted to be part of The Crowd, the Hive Minds who collectively attack anyone who disagrees with them.
I am quite happy to amend my language for others, because nobody else is me, in my head or body, and it would be the height of insult for me to try to compare someone else's issues to my own without respecting their personal views.

I was born a disabled person. It is most likely a completely different thing than people who acquired disabilities in adulthood, say via accidents or illnesses. For them, there was Normal Before. For them, they are "people with disabilities" probably because of the Normal Before Disabled After deal. I never had a Normal Before. I never had a Normal.
Also, I will stand up and say it: I am not "normal." I am not "just fine." I do not need to be patronized, condescended to, cooed at. I am not "a person with epilepsy" - I am an epileptic person. It's the same thing, but with less eye-rolling. I am a "person with fibromyalgia" and a "person with cerebral palsy" because I don't thing there are "-ic" suffixes for those terms. In any case, I'm not putting my person first just because it's socially polite now. Fuck that. I am who I am. I. Me. Personally. And that means I'm still a person, just a disabled person, because I'm disabled, because I have disabilities, and walking on eggshells is painful. Like I said, I'm happy to amend my language for others. But don't put me person-first. It's not necessary, and it's rather irritating.
I am a person. I was born with disabilities. It is all I have ever known. My disabilities do not define me, and they never have and they never will. However, they are part of me forever, and I cannot and will not ignore them while putting on a fake gleaming smile.

I am a disabled person, and I refuse to shove my disabilities aside to cater to the politically correct whims of those who think I need to change how I see myself. If that makes me unpopular, offensive, insulting or on the receiving end of comments like "Really? Seriously? I can't believe you just said that." then so be it. We all have our own personal Things to deal with. Mine are mine and nobody else's, so I'm not going to be politically correct at myself just because a bunch of people decided it sounded better to them. There are only so many ways I can see myself through the eyes of my culture, and this is not one of them.

/rant over

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