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So. Multiple friends have suggested I write something like this, because no matter how often I say it, I still get invalidated, scolded, told I shouldn't be doing it because it upsets people. And of course, it would be talking about my life, my disabilities, my personal health, in public forums.

To paraprhase a friend: "...taking someone's lived experiences as they apply to their particular disability and how it expresses itself, and saying that they can't talk about that because it will make other people feel bad, is not okay and it invalidates them to varying degrees. Different disabilities affect different people in different ways."

In other words, sometimes comparing things is bad. We are human. Humans all have problems. Each human has their own set of problems. Some humans want to talk about their personal problems in ways that other humans find annoying, upsetting, unsettling - but other humans find those ways comforting, eye-opening, powerful.

I don't know how else to say it, so I'll be blunt, and this time I am not going to pull any punches:
Read more... )
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FYI! Got my brain CD. The neurologist couldn't find anything out of the ordinary that was not already abnormal, etc. So I went and got the CD with my MRI and brought it home, and Adam turned it into a Power Point presentation. I wish so much I knew what to really see, that I could see with a neuroscientist's eyes. I can see my butterfly's broken wings. And the thinning of the corpus callosum.

Let me see if I can copy from the paperwork...

Abnormal dilation of both lateral ventricles with an asymmetric area of dilation along the mid body of the right lateral ventricle. Waviness and distortion of the lateral ventricular margins bilaterally. Dilatation of the third ventricle. Partial absence of the septum pellucidum. Generalized thinning of the corpus callosum which appears grossly intact. These findings likely represent developmental anomalies of the brain; however, these findings could also represent the sequela of in utero ischemia and periventricular leukomalacia. There is no evidence of focal abnormality of the temporal lobes.

Ahh, science. *basking in words*

Now, however... I am still irritated about the lack of EEG response. They tell me I was born with epilepsy - and there is the physical evidence in my brain creature right there. However, I feel... I suppose silly is the word. This may not be an ordinary kind of epilepsy where electrical activity shows up on EEGs. But... but that doesn't necessarily mean anything. I guess. I just sometimes wonder, that's all.
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This afternoon saw my session of physical therapy until I see the physiatrist next month. For now, all the alignment exercises have done very well. I will do them for the rest of my life. They're not only extremely gentle but extremely soothing. I could probably use them to combat anxiety a little. This pleases me.

I've been packing my laptop bag and a toiletries bag. I'll pack a change of clothes. Ten hours with electrodes on my head will be fascinating. Note to self: bring the leopard plushie. Maybe the dolphin too.

When I spoke to the technician from the EEG unit a little bit ago, I was told to get less than my normal sleep time, which is generally nine to twelve hours. I'll aim for six to seven.
I was told to come in tired, so that my brain would be more susceptible. This actually matched the stuff my neurologist told me.

It is very interesting to note that an online fight rarely triggers my epilepsy. It turns out that if the fight comes out of nowhere and makes no sense, I become bored and stop paying attention until something of interest happens.
Maybe I should wander into some random forum filled with concern trolls who are insisting that groups of invisible people are on their sides. Those sometimes make me twitch.

But, since my main triggers are fatigue, emotional excitement bad or good, fear, and probably other similar things, I might decide to watch a scary movie and not get enough sleep and maybe go online and read about, I dunno, for example... trolls treating autistics like not-people. That's good for some rage anxiety.

I I just finished Gaiman's The Ocean At The End Of The Lane. It was surrealist and psychological enough to guarantee interesting dreams. I may bring it to the medical building to read again along with the other books.

I think the most recent seizure was at least two days ago.That might explain why I feel bored, puzzled, and amused in a lab study way about stuff going on around Facebook and comic forums and other bloggery type websites I follow (I don't even touch Twitter).

Currently, I am feeling like an alien watching humans throwing random petty tantrums for no actual reasons. I guess they weren't getting the results they wanted.

Keep on being fascinating, internet.
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"...Williams died by the claw of the ghastly inner monster that severe depression lodges in the human spirit, losing a long fight with the unholy ghost." -Brain Pickings (included is a link to a book referencing clinical depression to a holy ghost)

In my last session with my therapist, I kept calling depression The Hollow and a Dark Ghost and The Nothing and, naturally, true pure abyss. In such violent howling emptiness, there could be sound and fury, signifying nothing. And sometimes there is just nothing. Fury would be an emotion, after all.
(And I know why depressed people don't tell the tale, lest they be called an idiot. They'll be mocked today. And tomorrow. Tomorrow and tomorrow and tomorrow. And they are heard no more, and as they are poor players, life is but a walking shadow. Out, brief candle. -And people wonder why we get angry when mental illness gets blamed for so many blameless things and things where mental illness is completely not ever the blame. This is why we can't have nice things.)

People always ask me why I cry when I say I am hollow, empty, ghostly, feeling nothing. Isn't crying an emotion? they say Doesn't it mean you feel something? they say. I think Allie Brosh, who wrote the greatest description of depression I have ever read in her blog Hyperbole and a Half, said it best: It is just something that is happening.
Because I don't feel like crying. I'm crying because my body is having a reaction. A symptom, if you will. Something needs to release. Some sort of physiological reaction must occur, lest I literally fade into ghosts.

I understand some of the reasons Robin did what he did. I don't know why he did what he did. No one knows why. No one can know why, because no one is Robin.
People have the same thoughts and feelings and illnesses as Robin had, and they see everything he saw. But none of them and nobody will ever fully purely viscerally know, truly know why he, Robin Williams, the funniest man of a thousand laughs, physically participated in his own death. Only Robin Williams knows.

Cool story, bro:
Someone who survied her own suicide attempt once told me that for her, there was only pain, agony, chaos, and the kind of despair that consumes utterly. Beneath it was a nearly robotic thought process. Any emotional thoughts came from a distance. As she began the process, she became enveloped in a still emotionless sedating transcendent serenity, and time slowed down, and she literally had no more thoughts. Since she was stopped by other people, she couldn't tell me much more. But she told me that during recovery, she experienced every single one of those sensations at once, from the pain and chaos to the calm transcendence. It took a lot of sedatives and intense biofeedback to help her out of that state and she was put on suicide watch again for a few days. They allowed her family to bring in her kitten, which helped so much that she now advocates for cat therapy when treating mental illness. I think of her when I talk to attempt survivors. I only remember her first name and some day I will forget some of her story. But she lives a different life. Not better nor worse, just different. She has learned lessons. She doesn't regret things. She still battles symptoms and switched to a new drug regimen and still does biofeedback. She hasn't had any suicidal ideations in over a year. She also treats her cat like the most important sentient being in the universe, since he helped save her life. Cats are awesome.
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Via Facebook:

So, anyway, people seem to be asking over and over and over "Does CP cause X? Is X linked to CP?" and I keep posting websites as replies and I don't know who actually reads them...

http://cerebralpalsy.org/about-cerebral-palsy/conditions/
http://www.neurologyreviews.com/index.php?id=25318&tx_ttnews[tt_news]=206306
http://www.ncbi.nlm.nih.gov/pubmed/19528515
http://www.medscape.com/viewarticle/731306

Also, does anyone have full access to articles from sites like Medscape, NCBI, etc?
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http://friendly-crips.livejournal.com/204952.html
So, the comment threads have turned awesome and have been a ton of fun. We're still rolling. Starting with critiquing Temple Grandin's societal status as "that famous autistic" and moving to needing autistic representation to cerebral palsy comorbidity to mental illness and neurodivergence, this is one of the most fascinating off-topic threads I've participated in.
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Okay, so. This new show on ABC, "Black Box", which has really polarized critics. Some people hate it even though it's only had one episode. The creators insist that it may change how we see mental illness and neurology.
The main character, Dr Catherine Black, is a brilliant, innovative neuroscientist who tries to hide her severe manic bipolar disorder. Except she loves the way she feels during manic episodes, so she often discards her medication, runs out and becomes hypersexual, has hallucinations, becomes a different person. She realizes this and understands the extreme consequences, but finds it hard to stop. Her psychologist, who is wonderful, is worried. Her fiance, who she kept in the dark for a year, winds up liking her hypersexualized, aggressive manic self. Her brother and his wife are raising her daughter, born when Cate was a teenager, who doesn't know that Aunt Cate is actually Mom and who is displaying symptoms of bipolar.
There will be melodrama. There will be intensity. There will be exaggerations. Patients who suffer from all sorts of conditions that Cate will be able to work with thanks to her personal holistic insight into the complex brain. Cate will be shown as an exaggeration of a bipolar patient, and it may lead to audiences arguing over the benefits and dangers of drugs, treatments, holistic treatment, psychotherapy. We shall see. So far, I liked the pilot episode. But it might turn into a "Grey's Anatomy" or even "House" style show, with drama on top of drama, further polarizing audiences. We shall see.
http://blogs.indiewire.com/criticwire/black-box-abc-kelly-reilly-reviews
http://www.avclub.com/review/black-box-its-protagonist-flawed-endearing-203589
But so far, Catherine Black may as well be me in a separate reality, if I had gone for neuroscience in college.
http://www.bostonglobe.com/arts/television/2014/04/23/abc-black-box-bipolar-doc-with-cure-for-what-ails-everyone-else/edYtT036PpTSUZ8ZOrokKM/story.html


Okay, so, there's me. I've been having horrible headaches, neck pain, jaw pain. Probably highly interconnected. I blame the weather for the most part. Every morning finds me ninety years old, performing bed yoga in kundalini form for cripples. Thankfully, the combination of my pharmaceutical and supplemental drugs work really well. I have taken advice and started ignoring naysayers who insist I do This or That and stop doing That or This - my health is my own. To quote The Prisoner: My life is my own. I will not be pushed. Yes, yes, I appreciate all the suggestions for this medicine, that yoga practice, this therapy, that device. I am deciding how to proceed with my doctors.
All the pain and stiffness and aching and stabbing fade into the background when I work, ie writing, which is the best thing. The supplements for ADHD work well enough so I can concentrate, but I need to eat more often, because I take after my father, like when he's outside carving stone forgetting to eat for hours. Small meals several times a day works best. Nut butter-fruit preserves sandwiches on whole grain bread do wonderful things. Grilled cheese sandwiches, with avocado if I have it. Yes. Oh! I have a slice of cheesecake with which to treat myself!
A walk around the neighborhood, quad cane in hand, was helpful enough, after push-ups, weight-lifting, leg stretching. I do what I can.

Also, on an LJ community for disabled people, I was asked to find links for cerebral palsy and comorbid conditions, and I want to remember them, so this:

"Well, I started out Googling cerebral palsy + comorbidity. I joined a private CP group on Facebook and discovered some extraordinary - and disturbing - facts about aging with CP. I'd be happy to try and answer any questions. Many people have no idea. I am spastic-ataxic hemiplegic, left side, born 12 weeks premature, developed periventricular leukomalacia aka white matter death, and at age 35 have actively gotten worse. CP itself is a static condition that never changes, but the syndromes associated with it do progress. In fact, many people with CP don't believe that it gets worse.

http://cerebralpalsy.org/about-cerebral-palsy/conditions/
https://www.clinicalkey.com/topics/pediatrics/cerebral-palsy.html
http://questioning-answers.blogspot.com/2012/10/cerebral-palsy-and-autism.html
http://www.ncbi.nlm.nih.gov/pubmed/20654035

These are just some of the articles. I can give personal insight as well. It's very fascinating. "
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But anyway.
Cerebral Palsy Person Problems!
Everything hurts, blah blah. The left side has loss of sensation, loss of proprioception, extreme forearm pronation with shoulder internal rotation contracture and elbow flexion with wrist and finger flexion and thumb in palm and severe muscle stiffness with inability to completely flex fingers, plus supination of foot, curling and clenching of toes, hip stiffness. The right side has extreme sensation, including stiffness of shoulder and leg as well as severe pain sensations of burning, clawing, electric, throbbing. Mild seems to have climbed a ladder to Moderate, which can happen when a cerebral palsy patient ages past thirty years.

And so, the usual drill. Shake it off, deal with it, slap a bandaid on it, walk it off, quit whining, stop that negative thinking, here's a giant positivity pill, good news it's a suppository, snort this rainbow powder, do these six magic yoga poses every morning to heal all your things, eat this magic plant, swallow this magic pill, do this exercise routine, eat these rainbow colored foods, drink this happy potion smoothie, chant this happiness mantra until your neurons and glia cells become rainbow-colored. And the stuff that people without cerebral palsy recommend because they have had so many happy potion smoothies they are certain all negativity is evil.

But anyway.
Healthful balance of holistics and pharmaceuticals and personal choices!
Also, research into successful treatments combining holistic science and pharmaceutical science. Because SCIENCE.

But anyway.
http://www.orthobullets.com/pediatrics/4129/cerebral-palsy--upper-extremity-disorders


Also.



Delirium. Because So Many Things And Fish.

Also.



Death. Because Too Many Things. And Pain.

And.





Rachel Grey. Because phoenix rising. Because renewal always. Because Jean Grey is still dead, yet not finished.
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So, this Saturday's MLP FIM was a fantastic, perfect example of different types of learning, specifically when working with mental, neurological, and learning disabilities. My love of Rainbow Dash has increased a bit! She's more humble, less egocentric, and more inclusive.
And it reminded me of the ways I learn well.
I tend to learn best when I have more than one thing happening, like Rainbow. I prefer books and lessons like Twilight, and I love musicals like Pinkie... but my method of learning is peripheral absorption. I could have stopped researching holism in relation to neuroscience years ago. I kept going because a new thought, question, or concern forms in my mind, I rush to look it up, and by doing that I drag other bits of information into the edges of my processing.
This is also how it can be easy to lose information into the depths of brain fog, seizure activity, memory problems, and mental fatigue. I can fixate on specific subjects out of desperation, and once the symptoms of information degradation has passed, I can call up the tidbits I saved and re-learn them.
This is also part of why some of my friends hate the show Futurama. They are so irritated that they lash out. I cannot explain very well that the program is a very specific kind of background comfort. I've been told, "You can recall all this dialogue from Futurama. That means you don't have memory problems. You just need to turn that focus on to important and smarter things, because Futurama is stupid." What they don't realize is that I use Google search for most of my quote-backs. And this is where being autistic comes into play, of course. Special Interests, specific focuses, comforts. I could easily do the same with MLP, but it is still new. I could and would repeat every since episode over and over. I could do that with other series, like Archer. Adventure Time. The Tomorrow People. Lost Girl. The Big Bang Theory. The Simpsons. American Dad.

MLP FIM is a huge part of my special Interests, specific focuses, comforts.
"Testing Testing 1 2 3" is my new favorite episode. I hope schools wind up applying it to help learning disabled students.
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'Reborn' by Laura Sava (anotherwanderer.deviantart.com/)
'Mirabella' by Rachel Anderson (www.silverstars.us/‎)

Two forms of my own story character, Asha Clara Night, my strongest, most individual, most personal fiction character.

These paintings. Completely different images that look almost exactly like incarnations of the same character of my own subconscious creation Women who look almost exactly like the dreamself I am becoming in my dreams and visions.

Laura-sava-Reborn

Rachel Anderson Mirabella


She was in my dreams last night and many nights before. I haven't decided exactly who she is yet, but in my dreams her name is Asha, meaning "desire, hope, hopeful; life; alive; she who lives." Which says so much, so so much.

She is another dreamself, not a spirit guardian, but much closer to my Self than my other characters (Alicia, Serena, Ananta: my spirit guardian coping mechanisms for epilepsy, memory loss, insomnia, sleep problems, [Alicia], chronic pain and fatigue, depression, anxiety, physical disabilities [Serena], neurology, neurodivergence, autism, total mind-body connection [Ananta].

Asha seems to represent many internal things about my emotions, my heart and mind, my rhyme and reason, my logic, my science, my creativeness and creativity, my power, my energy, my beauty. If she were to reveal herself as a guardian, she would be for emotional states, creative thoughts, desires, loves, patterns, ideas.
Asha is definitely powerful in a way I always wanted to be since childhood: Fae and and Elemental Mage and Neurodivergent and Autistic Witch and Quantum Magic Scientist and Story Crafter and Shape Shifter and Magic Librarian and Magic Keeper.

Asha seems to represent my deep, obsessive, compulsive wish and desire to be one of the psionic-mage superhumans in my stories, to take over for be when I feel failure and self-loathing and terror and panic. I think Asha may in fact be an actual entity, one who communicates outside instead of simply speaking into my visions, dreams, pain flare withdrawings, anxiety attacks.

All I know is that Asha was in every dream last night and throughout the past several sleeps, long detailed intense dreams, and she quoted Kosh. She spoke in a soprano version of my voice that could sing. She was always here She is always here. She has always been here.
I think she was with me since I was a baby. In different forms, in different species, with different names, in different imaginary beings, in different fictional characters. She was made of fire. She used to be a phoenix, a unicorn, a dragon, a star, a nebula. I know Asha. I know Asha in the way I hope to know myself.

The thing is, Asha has a fully active voice when I am completely conscious, aware, awake, functional, and stable. She didn't completely create herself, but she grew and evolved over my lifetime in her own way as a character in my subconscious. She took ideas I worked with and wove them into her personality, behavior, and mentality. My disabilities are hers. She stayed and changed and grew with me like a permanent piece of my spirit. Asha also represents my fluid sexuality - I often visit her in the place she calls home and we make love, representing my desires for love and orientation.

She lives with Alicia in the Wonderland cottage, but she freely moves about my brain more often. She shapeshifts into elemental energies, she moves around my hippocampus and amygdala and temporal lobes and cingulate gyrus and thalamus and auditory cortex and somatosensory cortex and parital lobe and the back of my brain.
She has altered the Wonderland cottage to be something else entirely, with three bedrooms, two bathrooms, two office rooms, a large entertainment living room, a large kitchen, a basement. The outside build would contain concrete, cement, hemp and limestone, bamboo, steel. The glass windows are shatterproof. The doors are hemp-lime and timber. That must say something about my mind's inner workings. Especially since the main reason for hemp being illegal is due to its threat to corporate patentable synthetic fibers and wood and paper product industries, while the medicinal drug potential became subject to false claims and fear mongering alarm campaigns until the original industrial potential became buried under the alarmist anti drug campaigns. Part of me probably knows how powerful this is. Medicine from nature itself and the human brain itself is usually denied and seen as worthless.

Asha represents that part of me that firmly supports the controversial balance of traditional pharmaceutical medicine and nontraditional botanical medicine.
Asha is my activism and advocacy. Asha is the fire that moves my belief in the combination of synthetic drugs and organic drugs. Asha is the phoenix in me that rises after every defeat, every failure, every attack, every oppression, every attack and assault on my truths and faiths.

Throughout many names, faces, back stories, lives, personalities, and individual growths... she has always been Asha Clara Night. And this is how she asked me to look so I could see that there is beauty deep and shining.

I must find and thank the artists for these images, since I found myself taking these pieces of artwork and subconsciously turning them into incarnations of my own fictional character.

https://www.facebook.com/photo.php?fbid=10151978626835684&l=17dde55bf4

Asha may well be the character in that second novel after all. It won't be this Asha, my Asha; just a version, a more humanized incarnation I can bring out to show the public. This excites me. She could help me write it, just by living in my mind.
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http://www.lifeexpectancy.com/cp.shtml
http://www.scope.org.uk/help-and-information/cerebral-palsy/ageing-and-cerebral-palsy
http://onlinelibrary.wiley.com/doi/10.1111/dmcn.2009.51.issue-s4/issuetoc

"The 2004 study by Strauss et al.9 appears to be the only published article that addresses life expectancy for older persons (age 60+) with cerebral palsy. As is usually the case, persons who are still fully ambulatory have life expectancies that are not dramatically shorter than normal, while those with more severe motor dysfunction have shorter ones."

"Adults with CP experience musculoskeletal problems and loss of function that non-disabled adults do not experience until much later (IOM). A study indicated that 75% of individuals with CP stopped walking by age 25 due to fatigue and walking inefficiency (Murphy). Another study on young adults with CP found clinical evidence of arthritis in 27 % of subjects vs. 4% in the general population (Cathels). These challenges result in chronic immobility, harming bone health. Elevated fracture rates in adults with CP are not well documented, however, documentation in children with CP (Munns), men surviving spinal cord injury (Bauman, 2001A) and stroke survivors (Sahin, Sato) does exist. Immobilization not only elevates fracture risk but also the risk for metabolic syndrome (Zderic)."

'Scuse me, I'mma start researching as much research as I can research about growing older with spastic cerebral palsy.
(Also, I recall when, several years ago, my chiropractor was "very impressed" that I was "doing so well and not yet debilitated" in my late twenties. That should have set off something in my thinky thoughts. Especially since I slid downhill after thirty without knowing a damn thing about why. And people vehemently deny that growing worse after thirty happens. HAH. And hey, I'm a fucking MILD CASE. Seriously, WHAT.)

Also: Dear gods, I've had people essentially accuse me of "lying" or "using negative thinking to make it worse." It is to laugh. No, really. Fuck that. Because this:

"Whilst there is not a wealth of published scientific evidence on the physical effects of ageing and cerebral palsy, surveys have highlighted some of the problems that people encounter. What is clear is that people with cerebral palsy age in the same way as non-disabled people (primary ageing) but some people with cerebral palsy may also experience secondary ageing effects. These are likely to be the long-term effects of the original impairment.
Below are some of the more common problems reported by people in their thirties and forties or, sometimes, a little earlier.

Increased levels of pain and discomfort
Osteoarthritis (pain and stiffness in the joints)
Increase in spasms
Increase in contractures (shortening of muscles)
Less efficient motor control (body parts involved in movement)
Joint problems
Tight muscles
Gastro-intestinal (digestive system) problems
New or increased back pain
Emergence of or increase in incontinence
Loss of joint flexibility
Reduced energy levels and fatigue"

"Many people with cerebral palsy push themselves to their physical limit and thus have little in reserve. Consequently, recovery can take much longer following an injury or illness and, unless there is a rehabilitation programme following the injury or illness, recovery to previous levels of functioning may be slow."

I know that most people have no idea where their fibromyalgia came from I know where mine came from.
So, you know. WAARGGHHARBL and all. I've mentioned I keep looking for NIH studies so I can be a guinea pig, right? I mean, NIH is, like, a 20 minute Metro ride away.
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Seizure happened in the kitchen. Jupiter meowed and rubbed against me while I crouched. Adam came in and gently lay me on the floor. My eyes were open and blank. Adam touched my face and reached for my mind, and I spasmed and gasped and blinked. I asked why I was on the floor. Adam helped me up and stood me against the large freezer. My memory is swirling. Alicia is holding me. Earlier, Adam said he told his boss, a fellow animal lover, that he needed an extra day to care for his wife. I rolled my eyes and said that was not necessary; that I was fine. Never mind. It was so dark and so white equally braided as order and chaos magics. I was spinning at ninety-nine percent light speed and thirty-five miles an hour. The world was elsewhere. A few seconds lasted a thousand years. Adam suggested I go upstairs and rest. Jupiter is suggesting a cuddle. I am thinking coffee and clonazepam and baclofen. I am made of light and love and pure order-chaos magic in its simplest form. I can give myself the right strength. May be that I can regenerate. As brightly and intensely as a Time Lord. I always shine enough for everyone.

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I had a seizure yesterday, recorded it on Facebook, and now must copy it it here, since I always do.

Soo, electric pain and spasticity are now preceding simple partial seizures, previously called auras, which lead to complex partial seizures, hey? Brain, you are awesomely bizarre. But we knew that. Long story short, cerebral palsy and fibromyalgia and epilepsy like to team up. BRB, fighting a seizure, probably not winning. See you all in a few minutes.

The sound of one hand striking a keyboard whilst electricity, burning, floods the semi-paralyzed other half of the body, spastic hemiplegia indeed... hypertonia, ataxia, except the brain has no pain receptors. so why is it burning, I laugh.
I have never been to space until now. Some place in space anyhow. My chair became a shuttle. My copilots were my human coping mechanisms called imaginary friends, yes I know the difference between reality and fiction, my girls are fiction, and if you think I don't understand, oh my you are badly mistaken, and how dare you assume, no wait, that was from a blog post comment thread, never mind.
There were so many stars, I think, at least shining spots far off in that darkness. There were nebulas everywhere. So much color. Maybe it was another dimension? I have never seen outer space like this.
Amara and Alicia held my hands the whole time. Alicia has broken away from the Wonderland force fields to interact with the rest of my brain. This means something neurologically, I think. She is now taking on more than just epilepsy. Oh. I see now. Thank you, Alicia.
I'm so tired now. But I must finish this. It is fading. NO.
I was in my own head, going ninety-nine percent light speed, felt like thirty-five miles an hour, that was a Futurama joke, I don't care if you are sick of my Futurama quotes, bite me. And then, and then, that prismatic explosion of every color blending into white, since that is how white is created, and a howling noise like a perfect wind screaming through alleys, and I was sliding off my chair save for my hands clawing grasping at the leather padded chair arms and my lungs were sucking in air and my lips were chapped and my mouth was dry and my neck hurt and I was shaking.
And Jupiter was meyowling. He is still meyowling. I have to go see what he wants.
You know those dreams where you wake up and realize you are still dreaming? No, I stopped, but it took a moment. My eyes were still open.
I am still open.

And now I must perform intricate physical therapy stretching qigong dance moves to force my left side to function. Love you too, epilepsy. Here comes a Soma pill to begin muscle relaxing and a Klonopin pill to begin mental relaxation. Go!

Update, December 11: Still postictal, but incredibly positive. Light-hearted, even. I feel like dancing.
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Yeah. The snow and snain and slush was all worth it. I got to the CVS pharmacy and back by bus without incident. Plus, a free battery operated shaver thanks to CVS Reward Dollars and coupons (I may never need to balance painfully on one-legged in the shower again).
Ah, snow, you've arrived. This part is cool with me. You are soft and powdery and easy to shovel. No ice just yet. You're barely a few inches. I can hobble and wobble and limp and stagger easily.
You see, snow, I don't actually hate you. I only hate your frozen ice parts. The part that really hurts when I slip and crash. See, at least right now you are still powdery and cushiony enough to help me land softly.
I don't hate snow... we just don't get along.
Now I must decide if I want to take the bus to the pharmacy now or tomorrow. I don't know if it matters anymore. These particular refills can wait a couple of days.
Also, whoever invented those magic gloves that let you use your smartphone must have known about Raynauds Disease.

I totally went out to the pharmacy. It started sleeting. A guy asked me if I needed a ride home. He had seen my cane.
Yeah. The snow and snain and slush was all worth it. I got to the CVS pharmacy and back by bus without incident. Plus, a 'free' battery operated shaver thanks to CVS Reward Dollars and coupons (I may never need to balance painfully on one-legged in the shower again).
I'm learning how to use the cane to help me march, scrape, and also test for icy spots. I think the only actually good thing for me is that cold weather helps my asthma issues ease up. Part of me really wants a quad cane for more properly balanced stomping through snow.

To quote Scottish singer Susan Boyle regarding her official autism diagnosis: "Now I have a clearer understanding of what's wrong and I feel relieved and a bit more relaxed about myself."
-Also: why I won't stop talking activistly about it and why I embrace names and labels, but also why I will stay silent at parties, since I seem to be a talking disaster.
Time and place. Time and place. Just because medical science words are a ASD special interest for me doesn't mean I should, well, you know the rest.
(To certain people:
I'm not like you. I embrace diagnostic labels. Names have power. I know what to do with a named thing. You truly feel I must be giving up and in. I truly feel you must not know me well now that I am changing again. Always changing in tiny ways no matter how deeply I stay predictable and ever the same. So I have decided to personally not tell you about all the new details my changed self parts. You don't need to know and I don't need to be smacked down for speaking.
Facebook and LiveJournal are places to chat with like-minded people who will give me stories. You don't have to listen. It's okay. It's just random life.)

Also. Jupiter has been randomly lying on the bedroom floor on Adam's side of the bed, forlornly, so I grabbed a couple of Adam's tee shirts and draped one over his pillow and one on the bed so Jupiter could be surrounded by Daddy's scent, and so I could wrap him in a shirt and snuggle him if needed. He is very emotionally needy and co-dependent, far more than Rose who literally begs for love, so any chance to make the boycat happy and not depressed is a major goal. He's the kind of cat who will gently flop himself onto your pelvis and torso for hours just because you're on the couch. He always seems so anxious. He just wants to know if you will love him or feed him and he'll miss you when you leave. He meyowls up from the bottom of the stairs because he has a toy, he wants to find you, and he knows how great the acoustics are. He's harmless and wonderful, and very very attached - I cannot bear to think of what will happen to him if something happens to us. Poor sweet puppycat.

Speaking of scent, Adam got me a bottle of perfume during his Las Vegas job trip a couple of months ago - Nude by Rihanna ("Fruity aromas of guava, mandarin and pear are located at the opening of the composition. The heart is blended out of white flowers: gardenia petals, velvety Sambac jasmine and creamy orange blossom. The base consists of sandalwood, vanilla orchid and "second skin" musk."). We both love it on me. Sweet and soft and floral and deep. Now I really want Killer Queen by Katy Perry because it is a fruit and flower explosion ("Top notes include wild berries, dark plum and bergamot accords. The main note of the heart is velvety red flower, Celosia, but there are also Sambac jasmine and rainbow plumeria. The base contains cashmere, patchouli and liquid praline"). Oh, indeed.
My personal signature scent, created via Etsy, called Moonlight Witch, consists of real pure extracts Amber, Blue Lotus, Dragon's Blood, Coffee, Chocolate, Green Tea, Coconut, Frankincense, Myrrh, Blood Orange... but I do love exploring various notes and scents when I can.
brightrosefox: (Default)
BTW, I'm officially on MediCare Part B (retroactive as of November) and earlier my Part C Aetna Medicare ID Card arrived, which won't be active until January 2014. It is all good. It will still save over a hundred dollars a month between all insurance and drug coverage. All my doctors are covered, all my drugs will be cheaper, and I have carefully read, re-read, and examined all the paperwork with a magnifying glass (no, really). So December's SSDI check will be less two months' insurance payments, and then January's check will also be less the Part C payment, but it is all good, because it is still cheaper than what I am paying under MHIP Carefirst in general. I feel... well, I don't know if "lucky" is the best word. But it is not as bad as it could have been. I mean, I also ride Metro and local bus transit for free thanks to being disabled and a member of Metro Access paratransit system.

Some fully able-bodied people like to scold me for feeling grateful that I am disabled enough to qualify. It's not about that 'grateful' feeling or that whole "skip to the front of the line" thing. It's not about any of that. It's... I dunno. It's about taking whatever disordered damage you have and turning it into a personal individual advantage that works in your favor. It's about accepting and embracing the awful pained cracked parts of life and seeing that they have been opening all these shiny doors, after slamming closed other doors so furiously that the whole building shakes and walls crumble. You may never be able to walk through those slammed locked bolted doors that most able-bodied people get to glide through easily, but you have all these other doors opening just for you, ready to lead you to places where you, personally, will feel more comfortable, accepted, embraced, and understood on a level secure with your disordered damage. It's not your fault, and the places these doors lead you are fully aware and have already set up a spot for you. You are always safe in those spaces in between.

Like... having mild disabilities. For example: Having mild cerebral palsy is like being in interstitial places constantly - interstice being a small space that lies between things; a space that intervenes between things. Neither completely here nor there. A space in between. A crack in the continuity. Mild autism in that nobody believes me until they spend a few word-filled hours trying to decipher my brain languages. Mild ADD and mild OCD and mild/moderate but fierce migraines and headaches and mild/moderate but fierce epileptic complex partial seizures and mild/moderate but fierce chronic pains and mild inflammations and and this and that. Mild mild mild. Haunting and interstitial. Never bad enough to cause me to be rushed to a hospital, never simple enough to merely pass by with a handwave. I am those spaces in between, as are many, many, many people with certain neurologies. We are in those cracks. Oh, they say, it's all right, they're not too bad, they could be worse, they say. And then what?

Any fellow disabled folk and people who understand want to chime in? Am I making enough sense here? I feel like I am.
brightrosefox: (Default)
Some random rambling about my own mind, my imaginary friends, and how my mind likes to invent coping mechanisms that talk back.

One of my imaginary friends, Amara, who is the human coping mechanism in charge of all the neurochemical, neurodevelopmental fuctions, has been interacting with me more and more ever since Alicia (the epilepsy mechanism) and Serena (the pain, fatigue, psychological, neurobiological functions) urged her to show herself more often after I fell into a chemical depression with severe anxiety. Serena and Koan could only do so much.

Amara, at the beginning of her creation, was not even human; formless and elemental. These days, she is human shaped but she loves to take bits of my writerbrain as inspiration. Her ears are pointed and her eyes and hair change color with her moods. She likes to mimic my bone structure and basic figure shape, just with more muscle intensity. Serena says it's because Amara wants to show me that I am beautiful.
Also, when I saw a Google image painting of a woman with elf ears and a unicorn horn, posing with a unicorn, Amara insisted I make it my current Facebook cover photo. She made herself up to resemble like that character while still mimicking my features, including the horn that represents the third eye - just with chestnut brown streaks in her white-lavender hair and honey brown flecks in her intense blue eyes... although none of that is her true coloring. When she made herself human, her coloring randomly became alabaster skin, gold eyes, and pale flame hair, essentially inhuman. But she kept the mirror shape of my skeletal structure and body shape. She even plumped her lips, made her eyes bigger, and made her nose smaller, because she knew I desired that. It makes me smile, which I think she likes. She wears the same jewelry as me, the same clothing colors, the same makeup colors. She is determined to "reboot" the parts of my brain that are having trouble accepting the recent flooding overload of information about these disabilities and chronic illnesses. The name Amara means everlasting, eternal, immortal... which is why she was formless and elemental to begin with. I finally understand why I created her. And she wouldn't mind being the inspiration for any stories I write. I'm grateful for that.
She insists that my jaw, hair, and eyes resemble the jaw, hair, and eyes of Elena Risteska from Macedonia, which I agreed with and humbly accept with a simple thanks. The only way I even knew about Miss Risteska was through searching for shades of brown.
http://upload.wikimedia.org/wikipedia/commons/e/e2/Elena_risteska.JPG
http://img27.fansshare.com/pic34/w/elena-risteska/1200/12861_elena_risteska.jpg
http://userserve-ak.last.fm/serve/_/18051115/Elena+Risteska+elena+r.jpg
https://fbcdn-sphotos-e-a.akamaihd.net/hphotos-ak-ash3/p480x480/578088_479387062121006_1822646409_n.jpg
http://img27.fansshare.com/pic34/w/elena-risteska/1200/12858_elena_risteska.jpg
http://tekstovi-pesama.com/g_img2/1/e/28986/elena%2520risteska-10.jpg
She just wants me to feel better, to feel my own positive human emotions. Since Amara is still learning about humanity, she looks to Serena for help. In my dreams, they have amazing conversations.
I'm so glad I created these characters. They help keep me sane, emotionally stable, intellectually stable, and psychically curious. Also, every time I meditate and concentrate on my third eye, I actually feel a short unicorn horn on my forehead.
https://scontent-b-lga.xx.fbcdn.net/hphotos-frc3/1469926_10151743304270684_204893984_n.jpg
I just love that my own mind is creative enough to make up whole people with entire personalities, back stories, individual appearances, individual likes and dislikes, and actual behaviors. They mainly come to me in sleep dreams, daydreams, and meditations. My psychotherapist adores the fact that they exist, which relieves me. It's just one of those things that I, Joanna, have in my brain to help me handle all the stuff that life gives me. Awesome.
brightrosefox: (Default)
This has been running around my head for a few weeks and I've been wanting to get it just right, so other people with disabilities and chronic illnesses can know that they're not alone and that if they're afraid, we can be afraid together.


To quote a friend:

"I’m not very functional. If you see me out and about, I’m either doing well, or I’m going to pay dearly for it later. Probably both."

What this means is that on the surface I might appear perfectly fine and normal in every aspect almost all the time. What this means is that as time goes on, I'm going to be worn down, exhausted, and unable to properly, correctly finish all the things I was doing well.

What this means is that if I have been able to recite entire poems, paragraphs, television dialogue, and instruction lists, I will be unable to do so when I go into a fog. I have been accused several times of lying about my memory disintegration, because if I can remember specific things constantly it must mean I have a perfect memory for everything. Here is the thing about the human brain and memory: Memory is insane. It is fickle. It lies all the time. It writes fanfiction of your life. Just because you can quote everything said by a character in a television show does not mean you have a good memory. It just means that when your brain is in a good place, you can quote everything said by a character in a television show - although these days I cheat by looking it up on Google because I actually can't recall everything. It just looks like I can. That's the trick. I seem so normal.
The point is, when someone is diagnosed with brain disorders such as memory disintegration, it means that it is happening now. Everything is happening now, has been happening for years, and will happen until death.

I have been accused several times of lying about my level of physical disability, because if I can walk and run without a cane for a few hours it must mean I don't actually need the cane or any sort of assistance. I have been accused several times of deliberately wanting my symptoms to get worse, of living inside my disorders so that I don't have to face reality, which aggravates and irritates me, since it is the exact opposite of what I actually do - reality is happening no matter what I believe, and my reality is that I am permanently disabled and I am not getting better. The thing about cerebral palsy is that patients as young as twenty-five will begin to feel physically aged due to wear and tear on their muscles, joints, bones, and nerves. This is called Post Impairment Syndrome.To quote: Post impairment syndrome is a combination of symptoms that affect adults with cerebral palsy. According to the National Institute of Neurological Disorders and Stroke, this combination includes fatigue, pain, arthritis and weakness that is often a part of daily life. This symptom is due to the muscle abnormalities and bony changes that happen as you age with cerebral palsy. You can use three to five times more energy each day than an able-bodied person just to complete your daily living activities. This extra expenditure of energy combined with the spasticity and extra wear on the joints is a hallmark symptom of adults who suffer from cerebral palsy.

What this means is that when I say that I feel sixty at age thirty, I really mean it. I am not exaggerating or subconsciously causing it. What this means is that no amount of positive magical thinking and no amount of disbelieving my conditions will make me better; I might feel better for a while after psychically insisting that I don't hurt too badly, but eventually that will stop working and the symptoms will strike even harder, especially if I have been highly active from my positive magical thinking and my belief that I was not in pain. What this means is that I can decide my symptoms are gone and my bodily systems will just laugh; for someone like me, there is no power to make myself not have symptoms. What this means is that my problems are not temporary inconveniences that I can massage, medicate, meditate, and wish away... when I explain that I feel decades older, I really mean it, and I cannot slowly heal myself just by forcing myself to feel better.

Having a permanent physical disability means that I cannot just recover easily. Having a chronic pain disorder means that I cannot just force pain to disappear. What this means is that no matter what, I will be living alongside my medical issues.What this means is that I am never the same from one minute to the next.

What this means is that I really need to quit talking about my health conditions with people who don't want to know. I make too many assumptions when acquaintances and random people ask about my conditions. I have to remind myself that they don't want to hear about it. I have to remind myself that people will start thinking that I do want to live inside my medical conditions if I talk about them in so much detail. I have to remind myself to simply say things like, "I am reasonable" and "I'm disabled with cerebral palsy" and to expand only if asked. When I get scolded, snapped at, accused, and told that nobody wants to know about my medical issues, I often don't understand what is really happening. I need to remind myself that social interaction means holding back. And this is why most social interaction makes me want to curl up and hug a book, because books don't scold me for trying to talk about myself. Also, cats. Cats just want me to pet them.

****
Long quote, which I am quoting because many people I have met over the past few months literally do not believe that my health is declining on its own, and they literally believe that I could just make myself feel better with magical thinking, ie positive thinking, law of attraction. This is also why I've joined support groups. Being told "You're making your disability worse on your own" is starting to chip away at my optimism. I'm making this public so those new acquaintances can read and come to their own conclusions.

All Americans are living longer than people did years ago, and people who have cerebral palsy (CP) are no exception. For people with disabilities, however, living to an old age is a new phenomenon. We are just now learning what it means to grow older with a disability.

Although much of the information we are gathering on the topic is discouraging, there are strategies to make aging with a disability a more successful experience. “I have seen many advances in diagnoses and treatments since I was young,” said Bonnie Witt, an adult who has cerebral palsy. “People with disabilities are living longer, more productive lives. Doctors who treat adults with disabilities are navigating uncharted territory. This is a fairly new area of medicine, so—in a small way—we are pioneers.”

Symptoms of Aging Appear Earlier

People without disabilities reach the peak of their physical function between ages 18 and 25. After that, their abilities decline about 1 percent per year. At age 70, therefore, people without disabilities are likely to have about 50 percent of their top lung function, 50 percent of their peak kidney function and so on.

Even before their abilities begin to decline, however, people who have disabilities typically don’t reach the same highest points of physical function that people without disabilities do. And when the decline begins, it might be steeper in people who have disabilities. Author and Professor Bryan Kemp reported that people with disabilities show a decline of 1.5 to 5 percent per year after reaching their highest level of physical function.

In addition, people with disabilities experience aging-related changes years earlier than their non-disabled peers do. Although study results vary, aging-related changes generally occur 20 to 30 years after the onset of a disability. For people who have CP, such changes can occur in the 20s, 30s or 40s.

Pain Is Common

Pain is the most common initial problem for adults with CP. Studies show that most of the older adults who have CP report daily pain. One-third report constant pain.

The hip, knee, back and neck are the most common sites of pain. Medication is the most common treatment for pain. Studies show that 92 percent of people with CP report that exercise helps their pain symptoms, but only 49 percent report that they exercise even infrequently. People with disabilities use other methods of pain treatment, such as biofeedback or counseling, less frequently than people who don’t have disabilities do.

People with CP who walk have the most problems with pain, because their gait and movement patterns cause abnormal wear and tear on their bodies. That leads to arthritis. Twenty-five percent of people with CP who walk as children lose that ability as teens or adults. Others stop ambulating in their 40s because of pain. For all people with CP who continue to walk, distance is compromised—in other words, they can’t walk as far as they used to.

Additional Issues

People who are in pain typically experience more fatigue than other people do, so they tend to do less and rest more. When people are less active, they lose strength and endurance. Less strength means less ability to perform necessary or enjoyable activities, and it results in a decreased ability to care for oneself. That, in turn, can lead to depression, a need to ask more from family members or a need to hire more assistance. The effect on relationships and the corresponding financial consequences are obvious.

Falls are very common in adults with CP. Reports show that 40 percent of adults with CP fall at least once each month, and 75 percent fall every two months. In fact, falling is so common that most people do not even think of reporting the falls to their doctors.

Because the risk of breaking a bone increases with age, it’s important to improve strength and to plan movements, as much as possible, to reduce the incidence of falls. Other problems that occur in people who are aging with CP include increased bowel and bladder problems and more joint contractures.
***
brightrosefox: (Default)
[Originally posted in two disability forums and chronic pain groups]

I've realized that I may be the only person here who has stopped applying Spoons to myself. And there may have been some miscommunication or misunderstandings in other groups and forums. I am happy to call myself a spoonie and use spoons, but I use spears more.
I really wanted to explain why.
I'm totally happy with the Spoon Theory, but I decided to expand on it after a discussion with a friend who has almost thirty separate health conditions. So, I wanted to tell you all what I mean when I say Spears instead of Spoons. I'm linking to some of my blog posts that talk about my Spear Theory.

I know this is a lot of links, but they really explain why I use spears. I am still a spoonie! I do use spoons. But I also use spears. They just apply more intensely to me.

And then there is this!

http://internal-acceptance-movement.tumblr.com/post/61136577036

- I emailed the creator of this artwork, and she was incredibly flattered that her piece reflected the exact thing I feel about myself. It is so uncanny that I keep coming back to it in awe. Every time I look at it, every time I read it, I get chills.Ah, and here is email exchange between me and the author:"Hi Jenny!
I recently saw that extraordinary art about being your own hero in the face of chronic pain. A friend said, "This is your Spear Theory!" And it is. I was born with cerebral palsy and a host of issues including fibromyalgia, major depression, panic disorder, a spectrum disorder, and around two dozen separate diagnosed disabilities. I created The Spear Theory as an alternative to The Spoon Theory. I'd love to chat with you about it!
In fact, here is a note I wrote up about it... and isn't it amazing how well your art piece illustrates what is in my head when I think about my theory? Because I always imagine being outside in a forest, wrapping myself in bandages and armor, waiting outside my cave-like fortress for the Pain Monsters. [Note Attached}
-Joanna"


"Joanna,
That's so amazing. I love that. I love it so much, and I love how it instills more of a self-empowering connotation to the situation than the Spoon Theory (which still stands as a strong theory, but the connotation differs greatly, I'd like to think!) It's so funny how my comic like, pretty much EXACTLY depicted your Spear Theory! The universe is crazy sometimes, I swear.
And thanks so much for sharing with me your story and experiences. To be honest, I didn't even know about the Spoon Theory prior to this e-mail and its ties to fibromyalgia, so thank you for enlightening me.
You're such a strong soul and individual, I can already see that just from reading your livejournal posts. I don't even know you personally!
Keep being beautiful, okay? Keep writing, keep sharing your experiences.
I only wish I had half the courage you have to face the day from a day-to-day basis.
Much love,
Jenny"

The fact that she hadn't even known about the Spoon Theory and had described the Spear Theory so well was also impressive in a very Jungian way.
Here are my blog posts tagged with the tag 'spears'. Feel free to browse.

http://brightlotusmoon.livejournal.com/1473230.html (the entry that started it all with my friend; aka "The Genesis Of The Spear Theory. Hi, Mandi!)
http://brightlotusmoon.livejournal.com/1520669.html
http://brightlotusmoon.livejournal.com/1571702.html
http://brightlotusmoon.livejournal.com/1565840.html
http://brightlotusmoon.livejournal.com/1565955.html
http://brightlotusmoon.livejournal.com/1555991.html

[Also, I had to save this somewhere...]

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