brightlotusmoon: (Snow White Blood Red Light Pale)
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... )
brightlotusmoon: (Asha)
This is the greatest.
http://yoganonymous.com/watch-ultra-spiritual/

Good news: Apparently, most of this small weight gain is actual muscle. Who knew.
Annoying news: Everything hurts in such a very specific way everywhere that most forms of exercise make it all worse. The only things that seem to make it better are isometrics and mild qi gong and a few basic Pilates-style moves... sooo, physical therapy with a spiritual bent?

Also, I still have a stress reaction to even the idea of "doing yoga for pain". None of my doctors are surprised. Plus, the physical therapist suggested some lovely snarky replies to "Have you tried yoga for your pain?" - my favorite is still "Well, yoga tastes like artificial banana, and I hate artificial banana flavor, so I don't want any yoga, thanks." Second favorite is "Nah, I'm still trying that floating Jedi thing in the swamps. I'd rather take the Dark Side with the cookies."
Seriously. Don't yoga push me. I did try it, it was painful, I found other things.

Now I feel like mimicking that scene where Bart draws a picture of Flanders and chases Homer around with it yelling "Howdily doodily! Howdily doodily? HOWDILY DOODILY?" Luckily, I haven't been pushed in a while, and the last few times, I remained calm and cool, because I am still fucking awesome.

Addendum:
Also, it's really interesting: I am totally fine with basic yoga, with flow yoga, with restorative yoga. But it is the way people talk about it as though it helps everyone heal everything? That is what I gripe so much about. Maybe some poses will help ease cerebral palsy issues, fibromyalgia issues, joint issues. Maybe. For some disabled folks. But if I say something like "No, thank you, I've tried that, it was too painful, it made things worse, and I have found other exercises that help me," I expect people to, if not back off, then at least acknowledge my reasons. The actual fact that many pushers have brushed off my reasons and kept pushing is what makes me want to slap them with their yoga mats. So when I talk about an exercise by calling it a name that is also the name of a yoga pose, please please do not assume I have taken up yoga. It's just that "Warrior Pose" is far simpler than having to describe the whole thing.
Comments:
Anna Sirén: Yoga? Us? Really? ...?
Joanna Capello Paul: LOL, it is to laugh. But by gods, people love to try.
Anna Sirén: Jesus, I can't imagine you with your ankles behind your ears, and that's not an insult.
Joanna Capello Paul: OMG ow. Ow ow ow OW.
Joanna Capello Paul: I'm just glad other CP folks get it. I don't know what's so particularly special about yoga, but it's become so elitist in many ways. And if I say I'm "doing Child's Pose" or something, I feel like I need to add "not actual yoga because that is painful" because just because it's a stretching exercise doesn't mean it's a yoga pose.
Cara Liebowitz: When a teacher who knows how to handle Ceeps is doing it, yoga can be nice. *coughcough* Kara T. Billingham. Yoga at crip camp was great fun, if painful.
Joanna Capello Paul: My mom teaches a certain type of yoga to seniors in Southampton sometimes, and the moves are so simple they're barely even yoga. What bothers me really is this culture of yoga-ier than thou elitism, and gods forbid I perform a "yoga style type pose" that is not yoga.
Cara Liebowitz: I wonder if Kara and your mom know each other. Next time you're in the Hamptons, stop by The Yoga House, LLC and ask for Kara, tell her you know me. One of my favorite things about Kara's yoga was that she encouraged us to laugh if we wanted to.
Joanna Capello Paul: Hmm. I'll ask my mom! Have you spoken with Kara lately?
Joanna Capello Paul: *looking at website* Well, it's good that she teaches Kripalu. My parents' basement tenant, who is a massage therapist, is a certified Kripalu teacher.
Cara Liebowitz: We speak every so often here on Facebook, last I saw her was over the summer. She is wonderful, wonderful, wonderful and so is her husband. Two very influential people in my life.
Joanna Capello Paul: I haven't been through Hampton Bays in a long time, but I do recognize that sign and building. I have a feeling that Kara and my mom have run in similar circles.
Melissa Boyer O'Doyle: I'd rather take the Dark Side with the cookies.
Heather Stover: I do vinyasa flow yoga and restorative yoga. It helps. With some things. It is not some magic cure for everything. If you're not into it people should leave you alone, your yogi wouldn't want you there with any less then a willing mind and heart.
Heather Stover: Gentle yoga classes are the bomb. I hate elitist yoga snobs.
Mad Miriam: You know you might just get people to back down more quickly by simply sating that you have a very satisfying home practice, thank you very much.
Joanna Capello Paul: ...except that when they keep nudging and insisting, I tend to feel backed into a corner, and I start snarling. I'm a very peaceful person. But I am also shy and isolated. I really don't like being pushed.
Mad Miriam: If your agreeing why are they still nudging and insisting?
Joanna Capello Paul: I really wish I knew. People are very odd.
Mad Miriam: I'll say. I'm sorry, I for one do not push cause well I know you have met the practice where you are at and since yoga means union isn't that the fucking point anyhow?
Joanna Capello Paul: Agreed. That's why I am so upset and pissed off when people don't seem to understand the whole damn point. Union is about, y'know, respecting people's choices. The fact that there ARE yoga practitioners who almost bully others into doing their kind of yoga - particularly disabled people - hurts me.
Joanna Capello Paul: For example, in the cerebral palsy support group I am in, there have been stories of non-disabled people pushing CP folks too hard, leading to injuries that were not fully recovered - physical and emotional. And that is just not right at all. And I feel like that is part of the weird elitist attitude that shouldn't even exist with yoga practice.
Mad Miriam: OMG Joanna Capello Paul I could not agree more, as a fairly mild arthritic I get the same shit and I don't get why its so hard for some teachers to understand that just cause I got into a really low lunge last week this week my knees and hips might just be too stiff to go there and that it does not mean I am not dedicated to the practice, it means I am listening to my body, something we should all aspire to do more often.
Joanna Capello Paul: Listening to our bodies! Exactly! I don't think people like that care about listening to the body anymore. You do what YOU must do for YOUR body. And I am so burnt out on teachers who don't listen. It's why I do restorative, flow moves with my mother over the phone.
I mean, I literally cannot be straight. When I try a lunge, or a pose that requires balance, I have to ask someone, usually Adam, if my body lines up. And when he helps get me into a straight aligned line, I start wobbling. It hurts. I am in serious pain. My body, my very bones, were never going to align like that. And so I need modification, compensation, compromise. And the fact that a lot of yoga practitioners have insulted me just for that literally created a stress reaction in my brain. So when I talk about yoga poses, I have to say "modified basic yoga" otherwise I start hyperventilating just from memories.
Mad Miriam: It is a myth that our bodies and bones can align to some artificial standard, we all all have such diffent experiences and phsyologies that make up who we are and it my mind if you are making room for the breath and creating sensation, but not pain you are doing it right. I totally agree through and think it is part of the problem with the comodifying of yoga, I think once upon a time, maybe there was the root of the notion that yogis practiced to access a place beyond pain and body and to reach a space where they could meditate and focus on breath and vein, but with institutions like lululemon and power yoga people see their yoga as about perfecting the body and not reaching past the veneer that is the body. Its fascinating and sick really.
Joanna Capello Paul: I appreciate you saying that, Mad Miriam. It makes me feel better, knowing that there can't be such "perffect alignment". I was always, always told that I'd never reach any ideal pose with cerebral palsy. So I stopped. And I found isometrics and just started doing meditative stretching, which was my version of yoga anyway.
Mad Miriam: Next time someone starts to push hard ask them if they practice Ahimsa, it is the first basic principal of yoga and translates into compassion for all living things, if they say "Of course." then tell them you do as well and intimately understand what is most compassionate for your body. Namaste.
Mad Miriam: I think all the wrong people have been foisting their opinions on you. I took up Kundalini yoga last year and the whole idea of it is that through the practice you are opening up channels on your spine for the kundalini energy to come spouting out of the top of your head, I expressed concern that I had a slight scoliosis in my spine and that according to this notion I was ineligible for kudalini enlightenment, my instructor said "No worries, the energy meanders its way around these things, it's like a stream." Thus I go with that notion.
Joanna Capello Paul: Ahimsa, eh? I shall look into it!
I have fallen in love with kundalini energy. I do what your instructor says, instinctively. I don't necessarily do all the poses and moves but I reach for that energy in my own way. Maybe one day you and I could get together and practice in our own imperfect methods?

*****
Copying stuff from other social media sites can be interesting...
brightlotusmoon: (Asha)
Sooo, you know how I've been chatting with my neurologist a ton, and also with my psychologist? Neither woman has spoken to the other. But they both recently gave me the same diagnosis.
(Now, I need to stress that I am perfectly aware of the "Stop relying on so many diagnosis labels, it's just medical stuff, what does it matter, why do you care, why do you think people would care" cliche that has been poked at me by, well, many healthsplainers and people who just want me to stop talking so much about my medical history, future, and present. And yeah, I get that. But guess what, I don't care.)
The neurologist was kind of relaxed about it at first, and after I left her office I didn't really consider it. Not until that one session with the psychologist, when she looked at me with tears in her eyes.
It's just that the neurologist used one term, and the psychologist used a different term.
And I would love words from those who are there. Because fuck it, it does matter.
http://www.psyweb.com/articles/depression/chronic-stress-disorder

See DC

Jul. 3rd, 2014 12:24 am
brightlotusmoon: (Default)
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.

brightlotusmoon: (Asha)



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?
brightlotusmoon: (Asha)
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.

New Friends

May. 2nd, 2014 12:07 am
brightlotusmoon: (Asha)
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.
brightlotusmoon: (Asha)
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!
brightlotusmoon: (Asha)
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.
brightlotusmoon: (Asha)
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!
brightlotusmoon: (Asha)
This is especially for[livejournal.com profile] naamah_darling because it talks about how powerful and precious internet communication is especially for disabled people.

http://palsycorn.livejournal.com/2269.html

She is one of my dearest friends. We met on a Facebook support group for people with cerebral palsy. She is the creator and head moderator and she is amazing. She is studying Disabilities Studies in college, she adores SF/F and is writing several stories and at least one SF novel with disabled superheroes, and she is the reason I am so down with being a crip, cripple, "ceep", etc. I love her.

Quote:

"I am a multiply disabled person. Phone calls require a type of mental, physical, and emotional gymnastics for me, which I seldom, if ever, have the spoons for. I have severe phone anxiety which I smash down and stuff deep inside me when I absolutely have to make a phone call. The anxiety is managed somewhat with the help of scripts (particularly helpful if I have to call to make an appointment or something, I write down exactly what I'm going to say, and approximate what the other person is going to say), and has gotten slightly better since the advent of cell phones (that way, I know that no one other than the person I want to talk to will pick up). But it is still VERY there. On top of this, I have to smash a phone against my ear and fight not to drop it, something which I do with alarming frequency, because my hands do spazzy things. This phone, which is usually supremely uncomfortable, because no one considers how it's going to feel when it's held against an ear when they make a cell phone, will have to be nearly glued to my ear for however long the call takes, requiring my arm to be held in an awkward position for that long, which, like most things I do with my body these days, will result in pain. Finally, phone calls require communicating verbally, and like many people with CP, I find it exhausting to coordinate the muscles needed for speech and still make my words clear enough to be understood. Put that all together and you start to see why I feel like I've ran a marathon after a long phone call."

YUP.
brightlotusmoon: (Asha)
I'm turning 35 tomorrow. 11:58 PM. Which means I tend to extend the celebration into April 7th, since it was so close to midnight and they were busy keeping me alive with the "extreme pre-term" deal.
35, huh? Well.
You know what? I don't even know if it matters. I'm still short, nobody thinks I'm even 30, I barely feel thirty-anything. Maybe that will change the more I approach 40, but right now, it's whatever. However, I will be eternally thankful I started all that skin care stuff when I did. My skin still looks good - despite body dysmorphia insisting that I am covered in ugly blemishes. My profile photos all have me with full makeup, but my brain still sees the grossness beneath. Literally no matter what people tell me. *sighing*

I'm watching "Too Cute: Kittens" right now, before I sleep. Turkish Van, European Burmese, Persians. Eeep, they are darling; especially the Turkish Van babies. They all are white with black giant dots on their backs and heads. Like cow cats - hey, like Luna. I think Luna is actually watching, from her spot on the back of the couch. Every time a wee kitten cries, she looks up and stares at the television.

I've gotten offers from Facebook friends to buy me birthday gifts, which is awesomely sweet. I gave forth links to Etsy products, and I was still like, "For real? You are serious in wanting to buy these for me? Dude." They say they will be late and apologized, and I was like, whatever, I don't care; even if I ordered them myself it would be very belated. I never expect these things.

Calliope has been sweet even in fierce play. This kitten constantly amazes me. She is insanely mellow and tolerant and unfazed by very few things. I have kissed all her paws and her nose and her belly and she just purred at me. Well, then.

I have a baby migraine. I just threw codeine and baclofen and MSM at it.
brightlotusmoon: (Asha)
What she said:
http://palsycorn.livejournal.com/2028.html

As I've said, I am vehemently against the organization Autism Speaks and I actively want to help take them down, or at least replace the entire board. The fact that they treat autistic people with abuse and neglect, have no active autistics on the board, compare autism to deadly diseases, and spend more on advertisement and on themselves than on helpful programs, makes me believe that they not only refuse to understand autism, but hate autism openly. To me, it doesn't matter how many nice things they have done for some families. They've done more harm than good, as proven through the links provided in my friend's post. As an autistic adult myself, I am insulted and offended by Autism Speak's attempts to "help the autistic" by wanting to eradicate autism, which is literally impossible and reminds me almost of a eugenics program. Neurological conditions that are wired into the entire brain ARE the brain. And hey, plenty of autists love who we are and wouldn't want a "cure" anyway. I know there are many autists of every age who would rather not be autistic, and I understand. I'm just not one of them. If you support Autism Speaks, I won't make you stop, because that's entirely your choice. I just need to get my views out there.
brightlotusmoon: (Default)
History hurts. Repeating a painful history still hurts.

I will sound very defeatist, pessimistic, exhausted, fed up, lost, and afraid to fight: I don't know if I can prevent my friends from using slurs and pejorative phrases that clearly insult disabled people. I know I can respond to "Oh get over it, it's no big deal, stop getting your panties in a twist, etc" with "Fuck off, you know I've asked you to stop." However, I can't fight. I cannot snarl every single time I am with a group and someone says that something (not a person) "is so ret***ed." Because I myself will feel like I am losing battle after battle and I am so tired. The people in my life, especially the assholes with hearts of gold who know they are assholes with hearts of gold, are willing to die and kill for me. I will defend them forever. I realize not everyone will respect my choice of family among these friends. But you know what, these friends know me, understand me, respect me, love me... even as their humor and sarcasm on my Facebook translates to what seems like ugliness. I watch "Archer" every week, after all. And as long as I have that battle axe gifted to me by my favorite asshole with a heart of gold, I can make fun of myself.
I don't know why I wrote all this. I dont know what my brain wants lately.


Posted via m.livejournal.com.

brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
My modified Disablility Compensated Qi Gong exercises always help, mentally and spiritually and psychologically and physiologically. Like yoga, except Fake Yoga Cripple Style that is not actually yoga. (FYCS. FIX. Ha ha ha...) (Or hey, Fake Yoga Cripple Style Modified Exercise. FYCSME = FIX ME. Ha ha. Wow. Dude.)

But it isn't helping today. I'm too Hollow, which is my term for deep major depression. I'm too Postictal, after that unexpectedly awful seizure yesterday and its aftershock which were tiny seizures for hours. Emotional responses are foreign and results of emotion are mere symptoms, like crying and laughing. I will meditate again, do more qigong work, and breathe and much as possible.
FYI. I am having an episode of pure major Depression plus major Anxiety. This is accompanied by mild memory loss of the past two days. Everything is foggy. I know I should be upset about something, but I cannot feel upset. What is upset, anyway? I think I hurt myself emotionally yesterday. I wish I remembered what it was. I believe it started out with false happiness. Remember that weird assumption of some sort of hypomania? I think I was outside of my rational mind.

Back to special exercises.
People keep suggesting and recommending breathing exercises. I know all of that. I know people just want to share their personal remedies. I love it. Please don't think I am rejecting you. I love hearing your stories. Even the stories about yoga. I wish I could explain why just seeing or hearing the word yoga evokes a sad, upset reaction. It isn't that I am unable to do yoga. It is just that yoga extremists do not listen nor care about my need for compensation. My body was born crooked. I cannot form a proper straight line even if I held on to something. No amount of cajoling, insisting, or pushing different forms will change that. Please don't do that. Please just accept that I have to perform qi gong differently, and that qi gong included poses that are similar to yoga, and that yoga is not the greatest panacea of healing holistic practices. This is part of why I don't want to visit California, which makes absolutely no sense and makes me look prejudiced.

So. Please, please do talk about how much yoga is healing you, because that is beautiful and I am genuinely, honestly joyfully happy. But if you wish to suggest a yoga pose that can be modified for someone with a shaky, spastic, crippled body, please suggest an alternate form. That is all I ask. There is no such thing as a real panacea, even in the botanical world, even in the plant and herb world, and certainly not in the exercise world. It is entirely possible that I will find a set of yoga exercises that will really, truly help me, and I will join the ranks of yoga enthusiasts. Anything is possible. Nothing is off limits. Except evangelism. If I wanted something pushed down my throat, I will drink water mixed with special fruit and plant powders, like sea buckthorn and moringa.
This is coming from my years as a holistic enthusiast and pusher. I was bad. I was essentially an asshole. And then I learned that it was just wrong. I never want to do that again. Just because something works perfectly for me does not mean it will work at all for someone else.

Any form of good physical-spiritual combination exercise, be it yoga, qigong, taichi, strength training, cardio, dead lift weight, isometrics, plyometrics, dance, hardcore dance, etc, is wonderful and beautiful and strengthening, and will help everyone in some personal powerful way. That is the point of exercise.
I love you all. If you really want to help me, don't push me. Just guide me.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
You guys, you guys, Cara's post is going viral in all the right places on Facebook! And Tumblr. And other blog places. Like, holyshit, she's slowly getting famous in disability circles. I love you, Caraboo!
(BTW, Cara is a young woman with spastic cerebral palsy who created a private Facebook group for people with cerebral palsy that has exploded with hundreds of members. I have made so many friends just from there. Cara also supports people with autism, fibromyalgia, depression, anxiety, all sorts of neurodiverse issues, and is generally a fantastic, truly wonderful human.)

http://thatcrazycrippledchick.blogspot.com/2013/12/this-is-what-disability-binarism-looks.html

My additional comment:

Many times, I don't use a cane to walk those twenty minutes to the grocery store or pharmacy. "Oh!" they say. "You don't have your cane! You must be feeling better!" I honestly don't see that as insulting or offensive, just simply confusing. Usually it just means I forgot the cane. I still limp everywhere.
Also, if I, at a height of four-ten, am struggling to reach a product on a high top shelf, and nobody stops to help and I need to hunt someone down to ask for help, it doesn't mean people can ignore me. I'm not creepy am I? Or worse, when there's a tall person right there in the aisle, catching me out of the corner of their eye... did you know there is a huge difference between me with a cane and me without a cane? Help comes much faster with the cane. That still confuses me. I'm still four feet ten inches. I'm still struggling to reach that shelf.
TLDR, still confused over how people react and act to physically disabled people with and without direct use of mobility aids, yada yada.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
I had so much amazing sushi it was amazing. I watched with amusement as one friend requested lobster miso and got, literally, a bowl of miso with a lobster claw in it... in the shell, and no tools save for chopsticks. I wanted more sushi, and they let me have more sushi because I fucking could, oh my gods, even the waitress was impressed.
I walked around a shopping area at night with friends and I didn't have a cane and it was all fine, and I socialized easily with four good good people, and when I woke up in the late morning, I hurt so badly that the only way I could get out of bed and walk anywhere, say, to the bathroom, was to put myself back into a half-asleep state.

And then... then, I got asked to weigh in on a discussion about how "our organic bodies must learn to heal themselves without medicine blah blah blah" and I was too tired to give a smackdown, so I just warned that HOLY NAKED CATS CHRONIC ILLNESS AND DISABILITY DOESN'T WORK LIKE THAT YOU ETERNALLY FLOATING-HEAD HIPPIE WANNABE. Never tell someone who needs certain medications to function to just quit those medications, or you will have to deal with some very, very irritated cripples.
Like, HI, this drug here, synthetically derived from that plant over there, is saving my life, and fuck you. Yes, yes, the medical community likes to "push" drugs and all, but sometimes those drugs keep people alive, so seriously shut your rainbow-dribbling mouth.
I have spent over a decade writing essays and blog posts about this, starting from that floating head holistic hippie phase of Only Supplements and Essential Oils and Meditation, to Okay This Requires a Chemical Drug So I Don't Die But Can I Still Take The Supplements to Goddammit I'm Just Going To Balance Holistics, Botanicals, and Pharmaceuticals forever.
And the next person to use the words "poison" and "Harmacy" in conversation with me will be threatened with getting hidden completely if not blocked from my forum feeds. Because I really am a serious holistic and scientific advocate for various healing plants and botanicals. I am a shaman in training. But chemicals come from various places. And sometimes, the chemicals extracted by scientists have a better effect than the pure volatile chemicals.
You think side effects from FDA drugs are bad? Eat a whole plant and spend a few hours writhing in hallucinatory agony. And GUESS WHAT: some people never even get bad side effects. Trileptal. Zoloft. Baclofen. Soma. Tramadol. Codeine. Klonopin. Guess what? I'M NOT A FUCKING ZOMBIE. Guess what else? I AM BETTER THAN I HAVE BEEN. So you know what? Float on. The cloud are gorgeous up there.
But my body cannot organically heal itself, sorry. If you're on of those people who like to say, "I'm not against pharmaceutical drugs at all, but have you ever considered just letting your body work on itself naturally?" You will be met with raucous laughter that would make the Joker question my sanity.
I have been dealing with this since my early twenties. I'm gone through the ENTIRE gamut of medicines after being raised literally on vitamins and homeopathy and various therapies and acupuncture. I will not claim to be an expert. But I've had life experience.
So hey, if you're going to cheerfully toss out a casual, callous thought about how someone shouldn't take a pill anymore and see what happens, you really don't know. You don't know. And this is why I try to go out there and help educate, advocate and activist. Because if I don't, people will remain head-floating.
I was once head-floating, and it was a good high while it lasted. This is why many of my friends are scientists, medical doctors, medical students, researchers, etc. I ask a lot of questions. Because I never want to be that head-floaty again.

Anyway. I applied a cream with special oils to my chakra points on my feet, palms, and ears, and my forehead. I took my "harmaceutical" drugs. I stretched. I did acupressure. I meditated. I did my personal compensated form of qigong (of which yoga is only a small part, so don't bother), I recited various phrases to relax myself and let my darker emotions drain away.

In conclusion: If I specifically as for opinions about something incredibly specific, I ask that people stick to that topic. Unlike my friend's post, which was derailed by a hippie wannabe who happily invalidated everyone by insisting that all we need is our own organic body to be healed. Sorry, friend. I hope that drug is going to work well for you! I've never tried it, as I haven't needed it. But I'm happy to help with research.

Anyway. Sushi makes things better. Lots and lots of sushi. Lots. Sushi.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
Because I'm always the fucked up, mentally bizarre, clumsy, twitchy screwy fool who never gets it right, and even when I try to make it better I do such a poor job it needs to be fixed again and again. Some people call it cute and endearing, some people call it stupid self absorbed insanity. I keep trying. I don't even know. I'm tired of people telling me what I should do just because they want me to. Advice and suggestions are awesome. Pushy preachy sanctimony is awful. And even if I don't do it the way people want me to, at least I'm doing it the best ways I know how.

My best beloved cat is ashes in a box because I waited too long; my floors are never clean enough; I watch the same television shows and movies and read the same books over and over for pure comfort and joy; my memory is disintegrating and the only reason I remember anything specific is because I cheat; I want my friends to be okay with each other; I want to talk about things that confuse and fascinate me which include my disabilities; I collect current My Little Pony toys; I just want people to realize that my autism has a name and they can use it without assuming I'm begging for attention, same thing with my aging cerebral palsy and fibromyalgia; I want people to stop insisting I do yoga and to stop insisting I quit eating wheat or dairy when I don't need to, I can't go vegan, I hate tofu and my body can't handle it, I can exercise all on my own;my drugs, supplements, and therapy sessions are working exactly as well as they should be and I twitch when any of them are attacked by people who don't understand; sometimes I actually do physically feel like an old woman and it is absolutely not ever because I am somehow conjuring it or desiring with magical thinking like in that book about law of attraction with pure belief, and if someone really thinks that kind of awful thing about me, then they seriously need to realize that I do not think like them and never will, and they cannot change that.
I am just me, and as I grow and change it will be me, myself, with bits and pieces of suggestions that I will keep and discard as I grow.

I have no fucking clue what made me write this out. Frustration, upset, irritation.
Feel free to pick it apart or ignore it. Just don't trash my medications or doctors, because in that aspect I am doing just fine. Just... this isn't even "vague posting" or "cryptic posting"... I just needed to release something. Social media like this may not be the best place, but by gods, I have so many people on my feed and friend list who understand and are in a similar place. This is for them.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
I suppose I have 2014 resolutions already, so...
1. Ignore people who tell me that cutting out gluten will help fix most of my problems.
2. Ignore people who tell me that cutting out dairy will help fix most of my problems.
3. Ignore people who tell me that doing proper yoga will help fix most of my problems.
4. Ignore people who tell me that ingesting certain medicinal plants will treat, heal, or even cure most of my problems. I may take almost forty supplements and I advocate fully for supplemental medicine, but I am aware that not even the ones seen as miracle magic panaceas will do everything for everyone.
5. Politely remind people that being autistic is not a death sentence, that autism is not caused by vaccines, that having autism means seeing and communicating with reality in various beautiful ways, that I do not want or need a cure for autism, and that any "charity" seeking to cure autism is not one I will support.
6. Politely remind people that cerebral palsy cannot be cured, that it in fact is a static brain injury that usually results in comormid syndromes, associated disorders, and attached conditions like epilepsy, autism, joint pain, joint degeneration, bone issues, muscle pain, chronic pain, premature biological aging in certain aspects, and the eventual need for a mobility aid, be it a cane, crutch, or wheelchair.
7. Politely remind people that recently, fibromyalgia has gone from a "trash can diagnosis" to an actual, factual pathology, and that most doctors and specialists now understand and most importantly believe it is a real condition and not just an excuse to get the patient out of the office, that there are many symptoms, that sometimes what seems like fibromyalgia really isn't and vise versa, and that there actually are ways to diagnose it.
8. Politely remind people that I only just learned of my autism in the summer of 2013, and I am still discovering and figuring out all the little things that comes with it. Including special interests, otherwise known as narrow interests. If I seem obsessive about one thing or another, a friend can choose to politely ignore me, because I won't care that much. However, being belittled, scolded, yelled at, snapped at, and insulted for being a broken record about certain interests will not be tolerated and might result in removing such people from contact lists.
9. Try to not grind my teeth when someone tells me to "just think positive!" about my health issues, as I have subconsciously internalized the phrase "just think positive" with magical thinking and the concept of pure belief healing illnesses. Try to see the phrase "think positive" as literal once more, not a ridiculous catch phrase from spiritual self-help books.
10. Be happy. Even when not. Also, keep slaying syndrome monsters and such.
These are not resolutions anyway, because I don't make resolutions. I just write lists because my memory is falling apart.

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