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Persephone, Asha, Hecate

July 2014

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Oct. 26th, 2037

Persephone, Asha, Hecate

New user name, new self

Hello from the LiveJournal user formerly known as BrightRoseFox.
Due to a complex thingy involving problems with emails and such, I have changed my LiveJournal name, my Yahoo name, and my Facebook name.
Everything is now BrightLotusMoon.
If you know me well enough, you know why I am now BrightLotusMoon.
So, yeah. Just FYI.

Also.
Dear Lovelies:
Not only am I feeling so much better, I truly believe I am worth everything that people say I am. I have been getting messages, emails, phone calls, and comments from friends who have told me what I mean to them. I have been amazed and heartened and lifted and joyous.
I may be a moonlight witch, but I cannot access the magic of the moon without accessing the magic of the sun. And the moon is always there, her power extreme eternally. And the sun is always there, his power intense forever.
I feel bright and powerful and in full bloom, like a great lotus blossom beneath the full moon.

Jun. 8th, 2036

Persephone, Asha, Hecate

I'm not you. You're not me. But we're people. Yay us.

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...Collapse )

Jun. 14th, 2035

Persephone, Asha, Hecate

My brain to your brain. To the universe.

...hush now; let me speak...
And sometimes there are days when all you can feel is that pain-filled urge to fly and fall, and all you can think is "If only I could make the world fly and fall with my brain; if only I could win my own game, always."
Read more...Collapse )

Jul. 17th, 2014

Persephone, Asha, Hecate

My Father Is Amazing

http://sagharboronline.com/sagharborexpress/page-1/a-mural-for-masons-in-sag-harbor-31918


Posted via m.livejournal.com.

Jul. 15th, 2014

Persephone, Asha, Hecate

He's not heavy... I am.

Dear Cerebral Palsy: You are making me angry. I don't like me when we're angry. Please to stop being so spastic and ataxic and hemiplegic and such. I will throw baclofen at you and also codeine because you are misbehaving. Stoppit.

Seriously, though, I feel gross. The fibromyalgia and the allergies are hitting me from all sides. My joints feel sad. Everything feels sad. I mean, in my body. My brain feels okay, although heavily fogged and stripped of some memory. Like, I actually can't remember stuff from yesterday. I remember Adam and myself running errands at a dollar/more store and at H-Mart, but I forget what we got. I don't think I had seizures. Just myalgia fog and memory loss. I had run out of some medicines, got more of them, but can't remember much else regarding that. It's similar to autistic inertia, but with fibromyalgia and disruptive cognitive tempo (ADHD) tossed in. The weather is dragging and heavy and I feel so, so heavy.
Sigh. Shrug. Meh.

Jul. 11th, 2014

Persephone, Asha, Hecate

Cerebral Palsy Comorbidity links and such

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?
Persephone, Asha, Hecate

Itchy thing solved!

It's poison ivy. Fun! The pain doctor nurse wrote me a prescription for prednisone, gave me some topical itch remedy samples, and told me to go home and take antihistamines. Friends then suggested extreme heat to draw histamines to the surface. I'm going to have a shower. Yaugh.


Posted via m.livejournal.com.

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Persephone, Asha, Hecate

entity of itch

I have this thing on my right arm that seems to have gone from an episode of The Itchy And Scratchy Show to Infection in a span of three days. Adam helped me apply ultra antibiotic ointments and a large adhesive bandage. I may take it to a doctor to see if I require oral antibiotics. I scratched so hard that I ripped off a mole. Sigh.


Posted via m.livejournal.com.

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Jul. 3rd, 2014

Persephone, Asha, Hecate

See DC

Psychology appointment was amazing and full of breakthroughs. We are doing it in a week since she will be away in August. I have been writing in a fury.

That bizarre health scare has passed, leaving me wrung out, worn out, and tired in several ways. I cut my daily meditation short.

Adam picked me up from therapy and we met Kyle at Twinbrook for lunch at a Lebanese restaurant. Kyle is having the time of his life living here and working at United Cerebral Palsy headquarters. Summer internships are awesome. From a Facebook support group to true friends. I have made my very first in person close CP friend. Here's to more.

I need to exercise more often.


Posted via m.livejournal.com.

Jun. 30th, 2014

Persephone, Asha, Hecate

That's it, body, your name is Khan

Seriously, you guys, I don't even know.

Last night, I had what appeared to be a plummeting crash of blood pressure and blood sugar, leading to violent vertigo with one-time vomiting, clamminess, cold sweats, passing out, horrible weakness and fatigue. Luckily, our summer housemate, my cerebral palsy group friend Kyle, was there to help out, and my husband arrived home soon after.
All day today, I rested. I slept into the afternoon; I ate small balanced meals; I slowly walked around the neighborhood.
Nope.
Still feeling it.
With Adam being home today and tomorrow, I think my mind feels free to express full-out WHARGARBL in the form of, like, shutting me down, I have no idea. I feel weak, light-headed, foggy, aphasic, exhausted, up and down: It is like epilepsy, migraine disorder, anorexia, fibromyalgia, anxiety disorder, chronic stress disorder, hypertonia, and sensory processing disorder, all at once, all piling up in one Hulk Smash. Even as I type this, my upper body is swaying. I'm taking bites of the baked brie in croissant dough, drinking whole milk, rubbing an ice pack on my neck, breathing deeply and calmly.
This is so, so, so strange.

Like, literally what is this I can't even.
Persephone, Asha, Hecate

A bodymind reaction perhaps

I feel ill in multiple ways, right now. I feel fatigued and dizzy, and sleepless. It should turn around soon. It is so hard to think well while the world spins. As the world falls down, you know.

Jun. 16th, 2014

Persephone, Asha, Hecate

What Is Autism?

This is autism! (The best explanation page ever.)
http://neurocosmopolitanism.com/what-is-autism/

Jun. 13th, 2014

Persephone, Asha, Hecate

I am a platypus of medicine: Comorbidity and friends.




Okay, so the above post on my Facebook has been getting a lot of awesome replies, and I wanted to share it here so people could see what I mean. I'm gonna copy the post itself here. If people's comments show, please don't bug the people.

Here is what I wrote:

So, fellow adult autists: Can we talk about autism comorbid conditions? When explaining the more annoying aspects of having an autistic brainworld to health professionals, the genuinely curious, and people who want to learn more, I've started talking more about autism's comorbidity. Because I have talked so much at length about cerebral palsy's comorbid conditions - which, in fact, can intersect with autistic comorbidities.

Also I ask all this since cerebral palsy is the result of static brain damage; ie periventrucular leukomalacia, which is closely related to, even can be a type of neonatal hypoxic-ischaemic encephalopathy. Cerebral palsy is technically a result of static non-progressive collective brain injury. So cerebral palsy itself stays as static damage, while its many comorbidities march on progressively, causing widespread chronic pain, a sort of premature organ aging ahead of chronological aging, bone and joint debilitation, muscle atrophy, etc - generally beginning in the late twenties, peaking in the mid thirties, and slowly moving forward through our lives.
CP alone is ugly and worrisome, but most research is so focused on children that older adult patients tend to be ignored. It's only recently that adults with cerebral palsy, specifically spastic CP, have been studied. Our systems are... I don't know the right phrase. Degrading? Slipping? Damaging? Certainly debilitating and disabling. As we hit our thirties, many of us do get worse. There has been a giant amount of self-denial in the CP community. It brings up a rallying cry of "I'm strong! I can fight this disease!" except strength isn't the point, you can't fight, and it's not a disease. It's a disability, and it's personal to each individual.

See, I'm spastic and ataxic hemiplegic, but mild enough that I've gotten "But you don't look disabled!" all my life. Even when my left side goes through classic flexion, internal shoulder rotation, toe walking, all very obviously (you see, it doesn't stay like that all the time, hence the mildness. But when it doesn it's obvious enough to get "What's wrong with your arm? Why are you limping so much? Were you in an accident?" comments.
However, the chronic illnesses that developed in my youth that we all ignored because we figured "it was just from CP" have gotten so much worse in my now 35 years. I am in a lot of fibromyalgia communities, for example.

Now! Since autism's comorbid conditions include anxiety disorders, sensory processing disorders, neurological disorders like ADHD and OCD, mental illnesses, epilepsy and seizures, visual problems, spatial problems, depth perception problems, I want to cross-check them with cerebral palsy's comorbids, which include... all of those, plus pain, joint issues, nerve issues, muscle pains, skin conditions.

But fellow autists, please correct me if I am wrong on things. I need to figure out how many of my comorbids are specifically connected to autism so I can sort them all out, charting and making patterns and checking them against the comorbids from cerebral palsy. What are other autism comorbids?
Also, I don't like saying things like "autism symptoms" since this is how I am wired from birth. Like cerebral palsy. So I've been saying "comorbid condition symptoms". Does anyone else do this?

Jun. 5th, 2014

Persephone, Asha, Hecate

First Aid To Self: I Need To Keep An Updated Textbook

Well, that was a thing.
The day before, I almost lost part of my right ring finger. I blame lack of awareness (duh) and spasticity. See, usually after I use the hand mixer for my cocoa coffee concoctions in my particular pitcher (take that, coffee frothers), when I wash it I submerse it in soapy water and let it spin. But this once, I accidentally had my right hand right near the spinning blades. I was holding the handle in my left hand (I know, I know), which suddenly spasmed (I know, I know), and then my right hand spasmed (I know, right?) and suddenly my third finger had touched a blade for a nanosecond before I lifted my left thumb off the button.
Nanoseconds are long when you're getting wounded.
And so, there's a tiny chunk missing off the very tip, to the right of the nail. I am absolutely amazed that's all that happened. Sloppy Luck wins again. There are enough layers of skin missing that the tiny circular wound was seeping serum after the bleeding stopped (which took a while). It now looks similar to a third degree burn.
(I have a picture. Wanna see?)
Adam, who was in California and AV teching a meeting when I called for first aid advice, said that anything deeper than a quarter of an inch would require stitches (we resorted to texting; he was surprisingly calm, but I am exasperating on a good day and he's a former EMT who has broken and flayed all his fingers over time, so). And that got me thinking about what I would do if I were alone and really injured. And I realized that in a serious major thing, my only chance, aside from the Comcast security camera dealie, would be to make friends with one of the townhouse owners right near me and call them to drive me to a hospital. There is Nicee, who has already told me that in an emergency, I could lean my head out the window and scream her name and she would come over from her place just around the corner. But I forget if she has a car. Damn, I need to go over there. She's usually out on her front walk smoking when I go for the mail. Other than waving hello and chatting, I don't remember which house is hers. Fuck. I'm screwed. I don't know why I haven't made friends with most of my neighbors since 2005.

Anyway, I can't find the specific finger bandages, so I've been using regular Band-Aids. And doing that with fingertip injuries is really fucking annoying.

When I took my shower, the bandage had to come off... but the worst thing was that I got soap in the wound. Meh.

Also, ring fingers are important. Especially when you have spastic hypertonia affecting one hand and the hand that is injured is your good hand. Good thing I taught myself to type with my first two fingers on both hands.

May. 30th, 2014

Persephone, Asha, Hecate

Blogs and Cartoon Network marathons

Links round-up.

http://terribleminds.com/ramble/2014/05/29/burning-the-mra-playbook-or-yesallmras/

http://www.slate.com/blogs/bad_astronomy/2014/05/27/not_all_men_how_discussing_women_s_issues_gets_derailed.html

http://sonnolenta.com/2014/05/28/why-i-must-be-public-about-being-autistic-day-7-neuro-friendly-life/

http://www.seventhsanctum.com/index-medi.php

http://thatcrazycrippledchick.blogspot.com/2014/05/yesallwomen-life-and-times-of.html?m=1

http://popwatch.ew.com/2014/05/23/x-men-ending-future-past/

It's been an odd, interesting month. Adam has been home often, errands have been done, rooms have been cleaned. I've been having intense junk food cravings, which I've placated and stopped having. I've mostly been updating on Facebook; and I may start copying entries from there.

May. 21st, 2014

Persephone, Asha, Hecate

Wait, what happened?

When did the Livejournal layout change so drastically? I'm just getting used to it. It feels kind of like some of the Tumblr blogs I've seen, just less irritating.

May. 17th, 2014

Persephone, Asha, Hecate

Testing

Why is the human mind so complex? Why is the human brain so intricately complicated?
Neurology is a supernatural extremity, an unsolvable puzzle. We cannot comprehend. We stand forever on the edges of brilliant and wild things we will never quite touch. This is humanity. It burns. It is indescribable.
No. We can only wait and watch.


Posted via m.livejournal.com.

May. 16th, 2014

Persephone, Asha, Hecate

I don't even know how to normal, anyway

Links to discussions about autism being its own operating system, not a processing error, so I can do research for a blog post about being picked on due to being autistic.

http://www.wrongplanet.net/postt188686.html
http://timetolisten.blogspot.com/2011/05/i-dont-have-autism-i-am-autistic.html
http://www.onequartermama.ca/2014/02/autistic-operating-system.html
http://www.huffingtonpost.com/ariane-zurcher/autism_b_2435209.html
http://juststimming.wordpress.com/category/autism/
http://juststimming.wordpress.com/category/ableism/
http://www.huffingtonpost.com/news/adults-with-autism/
http://emmashopebook.com/2014/05/15/a-documentary-two-blogs-and-a-youtube-video/

Anyway, Emma and Ariane and Julia are my favorite autistic bloggers so far. I feel like I should start watching the episodes of "Community" that focus on Abed, because I want to know at what point Julia got sad here: http://juststimming.wordpress.com/2012/06/04/someone-who-moves-like-you/

Since I am barely a year into my own diagnosis, I am still being so careful with autist language and the particular ableism that insists autists have no real voices or self advocacy. As they said in April: "Autism Speaks And Autistics Shut Up" - and really, I look forward to the day that "Autism Speaks" is shut down and torn down, and real advocacy organizations, like ASAN and AWN, can truly be in the spotlight, rather than organizations that seek to destroy neurodivergence. Neurodivergence is awesome, by the way.

May. 12th, 2014

Persephone, Asha, Hecate

My cats are awesome

By the way, remember when the new kitten was named Callisto and I changed it to Calliope? It's Callisto again. She still nurses on my shirt near my armpit when I'm lying in bed. It looks like she's suckling on my breast. I wear a wire free bra when I sleep, at least. But her kneading always seems to catch me on the neck.
I'm still Mama. I love it.
I just need to find a way to move Callisto's paws away from my neck. And always sleep in a cotton shirt. Even in summer.


Posted via m.livejournal.com.

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Persephone, Asha, Hecate

I really don't like thunder...

...the sudden thunderstorm is not helping this anxiety crap.
Somebody tell me stories?
Persephone, Asha, Hecate

Oh, right. Stuff goes here.

I am so sorry, LiveJournal. I never mean to neglect you. Facebook is full of all my friends and sometimes it's easier to cross post, you know?

I'm writing this from my phone while I lie in bed. Last night I had a panic attack and a seizure and insomnia and it was a clusterfuck. You know how in temporal lobe epilepsy, you sometimes get psychic and sensory hallucinations during postictal recovery? That's part of the reason I'm resting so hard. Body dysmorphia is acting up because my neurology is too fucked up to sort stuff out right now. I look in the mirror and see a creepy ugly version of me. My perceptions and sensory processing have been twisting.
Things feel wrong, sound wrong, look wrong, smell and taste wrong. My entire body is reacting to the neurology. Gut, muscles, skin, nerves. You know. I don't want to say I'm heading into a depression, but I know I am. Knowledge is very good. And you know what, the fruit flavored herbal vape supplement does help. It's a recent thing. I haven't talked about it. I like that it's like an opioid without the weirder side effects. It's supplemental to the drugs. I am profoundly grateful for the baclofen, the tramadol, the codeine. It all keeps me balanced.
This too shall pass of course.
My phone amuses me with its predictive text.
It is raining. No wonder I started crashing.
I will most likely edit and update the entry tomorrow.
I love you guys.


Posted via m.livejournal.com.

May. 4th, 2014

Persephone, Asha, Hecate

Being Alice: Lashing Out



Oh, Okay. That was very, very quick. Oh, that was less than a minute. So much energy, so much chemical screaming. Oh, Oh damn. My head is pounding. My fingers can't stop flying over this keyboard. I should go to bed. Oh.
Complex partial seizures are fascinating. Complex partial seizures that secondary generalize into Tonic Clonic seizures are even more fascinating and are rather grotesque. No wonder people were terrified in the past.
I remember grasping the leather chair arms to stop my body from catapulting away. I remember being aware of my mind, but not my body, as I watched my body from a window in my mind. I flailed and spasmed and strained and convulsed gently against the chair, and I fought gravity like a woman possessed. I was completely silent. My hair was flying all over my face. My body had no choice. Something had to release. Like a taut wire snapping. My wrists had strained from working to help my fingers stay gripped on the chair arms.
Things are painful now. Too tense. Tiny spasms now.
Oh, epilepsy. I do not appreciate you at all. Nope.



Also, I am technically okay. Postictal state has left me drained, exhausted, weak, tired, foggy, floating somewhere between hungry and not hungry.
I'm glad I wrote it down. The seizure, I mean. Sometimes I remember better.

Stretching, stretching. Massages. I don't remember what else.
Well, er. At least the ligaments in my knees feel less tight?
Also, seizure fogginess blended with fibromyalgia fogginess makes Joanna something something.

Also, according to my blog records, this was the first seizure in three months, so, hey, that's good.

http://m.livejournal.com/read/user/brightlotusmoon/tag/being%20alice

Yeah, well.

May. 3rd, 2014

Persephone, Asha, Hecate

Ramble, ramble, yaugh, body-ness

Seriously, though. This toothbrush containing edible gold, bought at H-Mart, made in Korea, seems to really do something. I've taken colloidal gold before. It was good to my teeth. The toothbrush, with nothing but herbal powder, actually seems to make my teeth feel clean, smooth, and hell, even detoxified. I don't even know if that can be a thing. I used it dry a few times and got the same sensation. DeoLife toothbrushes. Gold, bamboo charcoal, silver. I get the silver and the charcoal, those are famous for being antibacterial and such. The one with the gold calls itself detoxifying, removing plaque build-up easily. I am skeptical, but there seems to be some interesting evidence. My teeth are certainly whiter.

So, "Orphan Black" is still awesome. "Black Box" is still interesting despite possibly turning into a "magical mentally ill doctor always saves the day" stereotype. I mean, I really need to see more than these first two episodes, and I hate that a mere two episodes in it is already being torn by critics. But I mean, it's like watching my life in an alternate reality. What if I were a neuroscientist, dealing with my own neurodivergence and mental illnesses, able to help my patients precisely because I could connect to them on such a specific level... I need to keep having faith in the show, except for how Catherine doesn't want her fellow doctors to know she is bipolar, even though they probably wouldn't give a shit. Like, the boss was saying that any doctors with medical conditions needed to report them, since that one surgeon with the brain tumor had a seizure during a brain surgery and became suicidal. I realize that my disabilities and invisible illnesses are my private business. But if I were a specialist working in a hospital, in charge of brains, I might understand that my supervisors might want to know about my specific mental illnesses, you know, in case I had an episode. I don't know. I find Dr Black a bit untrustworthy with her addiction to her mania. I realize she has wanted to keep her bipolar private for her own Reasons. But I don't think that is helping anyone, least of all her daughter. I mean, there is a teenager involved, who is already displaying symptoms of her own. Does Catherine really need to stay under that radar if it might cause damage to her kid?
Thoughts, anybody?

Also, this is something I wrote on Facebook and might as well copy here.

***
http://chaoslife.findchaos.com/aging-agility
Perhaps I should attempt this "Max Capacity" exercise thing they describe in the comments. So far, kundalini has done nothing for my joints, but I am a smidge looser, so. As I told a friend, I am maintaining a broad sense of humor. Spastic hypertonia plus ataxia equals falling over and bruising myself. Which must be laughed at. Lest I go mad. But, you know, I learned something very important: Now that I have made the very personal decision to do a very specific type of yoga on my own, with no suggestions from anyone, I feel that I can better combat health zealots.

Speaking of, I so called it: A commenter posted this: "Not to be a bother but… If you did a little more exercise… I mean, there are 80 year old people that can do a perfect arch, so the age is just an excuse to do not do anything!"

Ahh, health preachers. Everyone knows what's best for you, and obviously you cannot think for yourself. It's like partisan politics, but way more personal. One side wants to be a coddling Mommy, one side wants to be a strict Daddy, one side wants to be a weird Uncle, nobody wants to actually help you without taking something for themselves. It's fun to sit back and watch, though.

And you know what, guys? I am actually going to ask for yoga advice. Specifically, though, regarding kundalini. I need suggestions for very light, gentle stretches that are good for osteoarthritic knees and hips. In particular, the ligaments are ridiculously tight due to palsy, and they keep tightening back up after any kind of exercise.

You see, I have been having intense dreams in which so much pain has been concentrated in my knees that dream me is often unable to stand and walk without screaming violently, both within and outside the dreams. It has gotten to a certain point in which I start lucid dreaming and become afraid that I cannot change the dream pain. I become afraid in the dream of moving in certain ways. In my dreams, all my fears and anxieties and obsessions are released, naturally, and not even using my cane eases them. It never helps that nobody notices, not unless they are unknown dream people. Too many dreams have taunted me about my friends not seeing these struggles, being too far away, requiring me to walk helplessly until I find relief.
A couple of dreams ago, I was in northern Brooklyn, trying to reach my childhood neighborhood of Midwood, along Kings Highway in southern Brooklyn. No taxi would take me after sundown, and this I was forced to walk and walk, and it did not get better. I had no magic powers. The dream people around me could only walk with me and talk to me.
The dream abruptly dropped me in a Metro station in which the escalators and elevators were broken. It may have been Wheaton, which has the longest escalators in the Western hemisphere.That is indeed a nightmare. For anybody, anywhere, regardless of health. Fitting that it would be in my dreams.

Back on topic: I would love advice on how to apply physical and emotional exercise to my unconscious mind.
However, please do not tell me to stop taking traditional medical treatments. Please do not bash my pharmaceutical medications, since they actively help my symptoms. If you want to see what type of supplements I take that are anti-inflammatory and joint supporting, check my Notes section for a post that lists all my medicine before making a supplement suggestion. Chances are that unless it is an extremely obscure herb, or an unusual TCM medicine, I have tried it.
Eh. I'll post that medication list.
https://www.facebook.com/notes/joanna-capello-paul/take-all-the-pills/10151028056823107
***

I cannot say I am well. Am I ever truly well? I mean, the only reason I consistently talk about symptoms is to remind others that we can work with all of this crap. Many of my dear fellow chronically ill cripples want to keep their posts sharing pain to a minimum, which I support, respect, and understand - because, really, it's the same thing day after day. I think the main reason I'm a frequent updater is because I get so many questions, so many please for help, so many requests for advice and suggestions and just words of love. And those things, I can give.

Also I think I may be in a depression episode. It's taken a couple of weeks to realize that. It's so... light. So subtle. Huh.

So. Other things...

http://juststimming.wordpress.com/2012/05/01/truth-is/
"What if being cured didn’t fix those things?
Because ultimately, if I took a cure, I’d be surrendering. Instead of fighting for my right to be treated and valued as a human being regardless of disability, I’d be letting go, giving in, and letting myself be changed into someone easier, someone acceptable, someone convenient. And I want to be clear– there is nothing wrong with wanting things to be easier or wanting to feel safe or accepted or just being done fighting. That just means that you’ve been asked to be much, much stronger than everyone else for much, much too long.
But if, in order to be safe I have to stop being me?
Then I’m really not safe at all."

http://erinmccolecupp.com/2014/05/01/blogging-against-disablism/
"We are prone to feeling defeated because it’s a battle just to get our muscles to move us out of bed every day, so telling us to “be more positive” in the face of that is kind of insulting."

Sensory Processing Disorder. Cerebral Palsy. Temporal Lobe Epilepsy. ADHD-Inattentive. Major Depressive Disorder. Multiple Anxiety Disorders. Autism. Fibromyalgia. Chronic Stress Disorder. Hypersensitivity. Spastic Hypertonia. Migraine Disorder. Chronic headaches. Chondromalacia. Sleep Disorders. Dyscalculia. Sciatica. Chronic Back Pain. Lordosis. Rhinitis. Asthma. Recovering Anorexia.
Oh, absolutely. Being told to "be more positive" is indeed kind of insulting.

My mom keeps telling me that I've fixated too much on being autistic, on advocating, on activism. She suggested that I just BE. I'll take it.

May. 2nd, 2014

Persephone, Asha, Hecate

New Friends

Hallo, new friends. I've been friended by a bunch of people in the past couple of weeks. Could those new friends step forward and comment on how they found me, why they friended me, and if we'd met in another online media or forum? Because, you know, memory problems. If we met on Facebook, can you tell me your name, or at least part of your Facebook name? Cool.

Apr. 29th, 2014

Persephone, Asha, Hecate

I Will Not Keep Calm, But I Will Carry On

For those who have been messaging me asking to share my words along with the "I Will Not Keep Calm" meme, the answer is yes, you may share. In fact, to make it easier, I'll make everything shareable as one.
***

EXACTLY.

(I'm not going to back down when you tell me that autistics are cursed and suffering. I am not going to back down when you tell me that people like me must be experimented on just to see if we feel pain. I'm not going to back down when you tell me I don't have a right to speak up about my needs as an actual autistic, that your right as "someone who works with autistic peoples/a parent of autistic kids" means you know better about my brain than I do. I'm not going to back down when you blatantly announce that people like me should not exist, that our very selves should be eradicated just because you don't like how our brain works to the point where you will falsify data, lie socially, commit fraud, spread toxic propaganda, and act like you know better than me concerning my personal interests. I will not keep calm. I will not be nice. I will not tone done my anger. Until you are able to accept autism as a divergence and not a disease, I will not stop poking and aggravating and annoying you. I've had some really good teachers. I have a chosen brother who is a self-proclaimed asshole with a heart of gold, who has shown me what it is like to explode rhetoric properly, and I know how to choose a battle to fight using proper logic, reason, fact, and science. And there are many people behind me. Do you know how many autistic adults are out there? You don't. Because you don't care about the ones who can and will speak up and speak out. And I am going to help change that.)

(Addition: Because I have cerebral palsy, I will add that other disabilities, such as other neurodevelopmental disabilities, could be included. I, personally, am proud to have cerebral palsy as a part of me. Same with autism. If you want to remove my disabilities, you want to remove me. And I like me. )



Yeah, life. It does things as you get older.

"everyone can't be right
but everyone will decide

i'm not afraid of the price i pay
i won't lie down as you walk away"



Shh. I'm being sneaky!
Persephone, Asha, Hecate

That's the thing about my mind...

http://aspergersgirls.wordpress.com/2012/03/31/day-62-females-with-aspergers-syndrome-nonofficial-checklist/
So, I found this on my friends list. For shits and giggles, I went through the whole thing.
I'm at 99 percent. The only one I paused at was 13 under Section I: "The middle spectrum of outcomes, events, and emotions is sometimes overlooked or misunderstood. (All or nothing mentality)." I've always seen everything in shades of gray... however, a strong part of me often wants to skew white or black on some things. Examples: Legal abortion choice, gun ownership choice. I am extremely for both without compromise. Which often puzzles many partisan people.

Also, this.
Dude. Dude.
So, I just got off the phone with the office for one of Maryland's delegate candidates. After listening to an assistant explain the candidate's policies and issues supported, I said I had more questions... and so she put the candidate herself on the line. I explained about my disabilities and asked how she would support accessible transport on the county. She was enthusiastic about that. She had been supporting it for years, she said. And then I pulled out the big guns: I told her I was autistic and I wanted to know if and how she would support advocacy for autistic adults. And she made me happy. She worked with autistic teens and young adults, she said, and believes that autistics have powerful voices, beautiful minds, and must not be shut out or neglected. I explained how we don't have much of a voice, and she said that she was "absolutely willing" to help with advocacy, and she fully agreed that since autistic kids grow into autistic adults, their voices are incredibly important. We thanked each other. And she made an offer for me to visit her in Annapolis to discuss opportunities for Montgomery County and how to help autism self advocacy, as well as accessibility for all disabled people. I have never talked to a political candidate like this before. I was stunned by what came out of my mouth. She was so excited. It was incredible. I told her I would vote for her.
You guys, what did I just do? Did I really just pour my heart out to a candidate for our state's House Of Delegates who actually listened to and supported me? I'm physically shaking right now.

I am not becoming. I am peeling away layers to un-become everything I am not so I can be who I was meant to be in the first place. -paraphrased from unknown online quote.

Apr. 25th, 2014

Persephone, Asha, Hecate

And this is why I like internet talking

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.
Persephone, Asha, Hecate

Brains. Braaains.

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. "

Apr. 24th, 2014

Persephone, Asha, Hecate

Aii.

Nnngghh. No. Nope.
*breath*
PAALSYY. *fist-shake*
*also literally*
*also thumb in palm, finger flexion wrist flexion, shoulder internal rotation contracture forearm pronation, elbow flexion, clonus... plus spastic hypertonia anyway and also fibromyalgia flare, also stabbed hips. Because fuck everything, that's why*
...*mutter*

A hot bath was mentioned. I requested the amazing secret to getting in and out of a bathtub when it hurts bad enough to scream. It seems there is no secret, just more pain and doing things anyway, because decisions. Magnesium salts, then. Magnesium oil massage, then. Yes.
AUGH. IT HURTS. CRIPPLE SMASH.
Oh, hey, the narcotics and muscle relaxants and anxiolytics are starting to do things. Heeeyy.
Still hurts, but heeyy. Walking. Look! Stairs seem possible again!
Still hurts, though. Just meh now.

Look, I keep telling them, mild counts. Children who have it grow up. Into adults who have it. Adults who are still disabled. Adults who are disintegrating as they age. And mild still counts. Just because I am not using a wheelchair doesn't m-
Oh, fuck this. I'm exhausted. I already went through it with them about the autism and the partial seizures and the OCD and the ADHD-Inattentive and the dyscalculia and the lordosis. And the pharmaceutical drugs alongside the holistic drugs. And I like talking to educate. But they don't seem to be listening well. They make me tired.
http://cerebralpalsy.org/about-cerebral-palsy/symptoms/eight-clinical-signs-of-cerebral-palsy/
*

http://unstrangemind.wordpress.com/2014/04/20/labels-are-for-soup-cans/
This is beautiful. Although, I've heard the term "identity" used in place of "label" and I think that's a cool alternative. But I, personally, will use the "label" term for myself, only. If someone else is fine with it, I'll apply it with them. If someone is anti-label, I will use whatever they use.

I've seen similar issues in gender: Some genderqueer and genderfluid people who do prefer the terms "male-bodied" and "female-bodied" often get scolded for not using "assigned male/female at birth" - but if that is the term you wish to apply to yourself, nobody should scold you for it or insist you change. If a person doesn't want to use the term "label" for themself, they shouldn't have to. But nobody should scold or insist that others stop using labels as identification.

It's like that whole "You shouldn't define yourself by your disability!" I would ask, "Why not? It is a huge part of who and what I am." Then again, I believe this may be part of a divide between those who were born disabled or acquired it so early in life that it is all they know, and those who acquired it after a life of ability/being able-bodied. For example, I take my being disabled seriously, and I have always seen it as a strong part of myself. However, because I was always told to not define myself with it, I learned to push that part down. Now I feel free to express it, now that I've been surrounded by new friends and acquaintances who feel the way I feel, which is wonderful and refreshing.

Apr. 23rd, 2014

Persephone, Asha, Hecate

On Emotional Manipulation, Verbal Attacks, and Health Preaching

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

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

The results were...

Wait for it...

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

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

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

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

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

Ahh, humanity. Fun!

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