brightlotusmoon: (Asha)
I did all my specialized personalized modified physical therapy exercises: The modified individualized Cripple Yoga with gi gong and isometrics, the stretching sets and cardiovascular sets, the strength training sets.

Now my body is ready to fall apart, lose consciousness, and catch fire. I hope I don't have those awful dreams in which my higher mind tricks me into thinking I am "healed" or some shit.

To head off any comments: When a person has various disabilities that are neuromuscular, muscuoskeletal, neurodevelopmental, and related to chronic pain of all kinds, healing exercise and healing workouts do not solve anything. There is no magic energy flow strong enough to tweak symptoms, syndromes, or conditions for the better. All it can do is slowly, carefully, mildly soothe and smooth out the cracks little by little. I'm going to fall over after I work out. It's going to take time and more, new pain. It's a cycle.

I already take [supplements that help with post-workout fatigue, with pain, with achy muscles]. I will list them if there is interest. No need to suggest anything. Eventually, I will feel mildly better, even though spasticity and hypertonia will just force everything back to normal, and then I'll need to play the game of "Is it palsy spasticity reset or epileptic seizure aura?"

This is an announcement: If you see someone with a disability like cerebral palsy and they are preparing for any kind of workout of exercise, don't make assumptions that they will automatically immediately need help from you. They know what they're doing, how to do it, why to do it. And they will ask for help if and when they need help.
brightlotusmoon: (Asha)
This is the greatest.

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.

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.
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)
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.

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.

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...
"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."
"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.
brightlotusmoon: (Magic Goddesses)
So, I had what I considered a palsy victory and agony simultaneously.

Depressive episode gripping me hard enough to draw blood, I walked out - no cane, because medicine and meditative stretchy exercise like whoa - and took the Metro to Twinbrook, walked the ten minutes to Congressional Plaza, shopped, stopped to eat sushi, and carried two bags back to the Metro, right side burning and feeling ripped open while palsy left side felt ghost-like and nearly numb. Got to Shady Grove again, took the bus and stopped at the Redmill Center right near my house community, went to the CVS and bought drug refills, limped and shook and spasmed and gasped as the bus dropped me off across from my townhouse community, walked with three bags that felt like dead weights, stopped to get the mail, went home, went upstairs, collapsed, and very weakly, feebly flailed and flapped and cried out "Yay, I did it, go me!"

I got myself belated birthday gifts, especially because the Rockville Ulta now carries
It Cosmetics, which is my top favorite makeup brand in the world, which I just learned today so it was like a cliche of angels singing. I'd been waiting for my Ulta to acquire It Cosmetics since last year, when the Silver Spring Ulta announced they had the brand and that Rockville would get it this spring. YES. I was also flush with coupons and points so I splurged: I got the new liquid peptide foundation and the new thin-brush peptide mascara; and also Ecotools brand konjac facial cleansing sponge made of konjac fibers, because konjac is one of the most awesome internal and external cleansing fibers in the world.

I was in horrid pain, honestly awful bad bad pain, pain that was like trauma pain... and I was happy. Because PAIN pushed me on. And VICTORY. It was nearly joy. And joy is something above emotion, after all.

I knew that my cane might have made my hands more full. But the fact that I was capable of doing all this without a cane... it was just... well, you know. Hemiplegic spastic ataxic cerebral palsy, spastic hypertonia, fibromyalgia, osteoarthritis, sciatica, lordosis, migraine pain, major depressive episode, autistic symptoms making everything loud and bright and I could barely look in people's eyes despite cheerful conversations. I did STUFF. I did stuff that made me feel good. I will be in pain for days. But I did it! I think the agony will be worth it, the codeine and the tramadol and the baclofen and the clonazepam and the capsule supplemets of devil's claw and MSM and cayenne and mangosteen and noni vinpocetine and oh my gods I can hardly walk and I am shaking all over and my muscles feel torn up and I want to break down in tears.
But I am proud of myself?
*wipes away tears*

Damn, I really hurt...

...and I forgot to buy milk.
It's okay. I have enough coconut cream, coconut milk, and sweetened condensed milk to work with my coffee until I can get to Giant. Plus a hand mixer blender device to whip it good. At Giant I can grab a lightweight jug of kitty litter and a half-gallon of whole milk, and canned cat food. I can bring a backpack plus a tote to see what will fit how, so I can take the cane.
I'm twitching so much. I wonder if this entire day was one big seizure trigger. Fuck.

Now, today, the day after, I am slowly preparing for my first meet and greet appointment with the new psychologist. My last one got too expensive after I switched to Medicare, and this new woman will work on a sliding scale, with my mother willing to help.
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)
Stuff I haven't really talked about lately:

1. Crooked Cerebral Palsy Compensated Fake Yoga, aka Modified Zen Meditation Stretching, for ten minutes, because what my body attempts to do is not any kind of traditional yoga, although it is hilarious and laughing at myself is good. (Which is also why I rarely discuss it - half my friends list is full of actual yoga enthusiasts who practice actual modern yoga. And since I don't believe yoga actually truly cures anything, let alone cures me, I stay quiet. It's like medical cannabis. If people would stop saying it's a panacea for every illness ever, I'll talk about it.)

2. Allergies. Soreness. Stiffness. Burninating. Did I say that loudly enough? And, naturally, fibromyalgia means everything GOES TO ELEVEN. And oh, yes, that's a thing. I've started feeling embarrassed about the word Fibromyalgia, since so many people associate it with whining and inability to "slap a band-aid on it and walk it off weakling" so I've started just calling it Myalgia, which is literally what it says on my neurologist's paperwork. Like, when she sent me for bloodwork, the paperwork said that my active illnesses included Intractable Epilepsy; Insomnia Not Otherwise Specified; and Moderate To Severe Myalgia, Connective Tissues. Apparently there are other paperworks that list not only the Cerebral Palsy, but the Periventricular Leukomalacia, the Autism Spectrum Disorder, the ADHD-Inattentive, the Clinical Major Depressive Disorder, the Multiple Anxiety Disorders, the Social Phobia, even the Tokophobia. Plus, there's a note saying that the Myalgia is causing gradual destruction of gray matter, except in medicalese. My neurologist and my pain management doctor are genuinely stunned and impressed that I'm living quite well on the "small doses of drugs that rarely need changing." I've been called Fascinating and Fun To Work With (I make doctor laugh a lot).

3. Dietary Stuff. I have cheerfully denied everyone throwing fad diets at me, even if they feel that those fad diets might actually be real illnesses and food allergies. The only food components that bother me are large amounts of pure soy and kiwi fruit. Plus, I just plain don't like corn or maize. Going gluten-free did nothing, I adore dairy, I crave red meat, and bread is good. And I dislike kale. I love seaweed.

4. Pharmaceutical drugs, dietary supplements holistic treatments. They are all saving my life, and everything is both poison and magic. Shut up.

5. Lifestyles. I like my solitude. After watching MLP's "Maude Pie" I have concluded that I have Maude moments as much as I have Pinkie moments, in my head, and my Fluttershy moments and Twilight moments are balanced. My friends by now understand that I'm good at switching back and forth quickly. Currently, I am both Maude and Fluttershy. Deadpan and flat affect, shy and soft, desperate to keep the peace and remain stable.

And now, I shall write a thousand poems about rocks.

Seriously. Maude. This is a stand alone episode, so anyone who has missed the new season will be able to watch.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
You know how people who work out a lot always say things like, "Wow, that workout class choice was intense! I'm going to be so sore tomorrow I don't think I'll be able to sit down!" and then they go do it all over again and again and they keep talking about their horrifically sore painful muscles and how it's going to help them get in great shape no matter how much it hurts?
I walked two miles between picking up my prescription, getting lunch, and strolling around the neighborhood, and now my entire lower body doesn't want to move. My legs, hips, and knees have decided that unless I have my cane on me, I cannot walk.
Where is my special prize? I though we got prizes for sore muscles.

See, this is why I sometimes feel slightly triggered if a friend talks about how painful and excruciating their extreme exercise regimen makes them feel. You know. P90X or Yuppie Boot Camp or CrossFit or Zumba or Power Yoga or Dance Yoga or AcroYoga or anything combining yoga with anything or anything combing dancing with anything. Also, I will never stop saying how sick and tired I am of hearing about Snobby Yuppie Yoga Workout classes. I get it, you stretch and expand your mind and you exercise at the same time; good for you; now put your mind back in your brain. Stop telling me how yoga can help me and why. Stop. Just... stop it. My mother (who casually teaches old ladies kripalu style disabled yoga) does that for me over the phone very well because we're the Gilmore Girls with more bickering and we do that kind of thing.

The point is: Having physical disabilities and chronic illnesses means living with certain limitations unique to each individual, no matter what. People in wheelchairs do exercise and yoga, people with breathing problems take dance classes, with with semi-paralysis take martial arts, etc etc... and everyone finds a way to raise their own limits while compromising and compensating to fit the workout to them instead of fitting themselves to the workout. Unfortunately, not all of us are able to do this in a class setting or even a group setting for whatever reason.

So. When I say that my body is in horrible horrible pain from extremely simple, quick, easy working out after you say the same about extremely intense, slow, difficult working out, a tiny part of me runs off and cries.
The story:
When I was very little, I took gymnastics to try and help with the cerebral palsy. I lasted one year. I excelled at parallel bars and rings and anything that put me in the air. But I could not do floor exercises or balance beams. When I was a teenager, I took tai chi. The master was sixty and looked thirty. I was the youngest student. I kept making the mistake of following the master and not accepting my body's limitations. The master forgot that I was disabled. In the end, I wound up handling a few injuries that led to permanent sciatica and the master was so horrified that he offered to help me recover and to pay for doctor sessions. When I was in college, I took a few simple, mild exercise courses, and after every single one, while the other students were high-fiving and laughing and feeling energetic, I was curled up trying to hide my tears of agony. The first few times I tried even basic yoga, my entire body rebelled and screamed negative things until I meditated and listened and learned what was better for me, which led me and my mother to develop a highly modified version that was almost not yoga.

The point:
I have limitations with my disabilities. Do not tell me that I have none. Do not tell me that the only limitations are in my mind. Especially do not (ever) tell me that the only disability is a bad attitude. Back off and let me do what I do and make gentle suggestions here and there. Offer to help me stretch a little more and steady my arms while I lift a heavy thing. Help me stretch and flex my legs when I do my physical therapy. Do not whine to my face about how sore you are after your dance yoga power ballet spinning acrobatics martial arts class done in a well-lit air conditioned crowded room blasting out hip pop music. You chose that. You wanted it. You had the ability. I dream about dancing. I dream about being a gymnast. I dream about mastering tai chi and qi gong. I do my best every day to make small, gentle, careful moves that point in all those directions. I don't push my limits. I raise my limits so that I have farther and deeper to go before I reach those limits. And it is going to take a long time. I have to be extraordinarily careful so I don't trigger various symptoms. I only look healthy.

So go on. Go do your Power Dance Acro Cycle Pilates Trampoline Athetic Yoga Karate Class. Rip up your muscles so they can knit together and become stronger. Be strong. Be intense. Be powerful. Be proud. Fuck it, be arrogant and condescending. You deserve it for all that hard work.
Just don't tell me that I can do all these things you do with ease and don't tell me I have no limits and don't tell me that I'm just challenged or differently abled. Do not insult me. Just talk to me. Then, if I ask, work gently with me.
brightlotusmoon: (Snow White Blood Red Warrior)
Skull and neck paims beyond belief, augh.
Caffeine and MSM and Yerba Mate and Moringa and Mangosteen and Noni and Soma and Klonopin and stretching and exercise and even MIPCCY - Yes. I think I too much Ultram yesterday by pure accident of brain fog, so no more for a few days. But the rest of it, yes. I will be okay.
I'm getting there.
brightlotusmoon: (Snow White Blood Red Light Pale)
I stretched the hell out of my back and legs and arms. It was lovely. I did it my way. I am very pleased and very satisfied. I won't discuss the various burning barbed wire pains that are distracting me even through the codeine, but I will talk about the beautiful meditative exercises I've been working with. Peaceful, serene, tranquil, calm, relaxing, refreshing, fantastic in multiple ways. The scene always changes, but always appears Zen in some way.
I had mentioned that my human coping mechanisms, my spirit guardians, had begun communicating with each other deep in my brain without my conscious knowledge, which leads me to believe that parts of my brain are starting to come together as part of the story, as my unlimited imagination and writerbrain is starting working on a whole new, amazingly unique, private story all on its own. No wonder I have been working on Amber's story beyond these bits of my brain. Amber has also given me free reign to write her as a fully developed character and not just a created coping mechanism.
In general, I am just... very happy.
And the funny thing is that I am in a depressive episode. I have all the symptoms, and I am quite conscious and aware. But I have things that are helping distract me: Talking about my imagination and my creativity, talking about the triggers for my panic attacks and my simple seizures, talking about comedy TV shows and powerful fiction books. Somehow it all is able to keep the major depression away, although it is a very intense fight. Sometimes I find myself weak and struggling, even physically, as thoughts of worthlessness and hopelessness, frustration and terror, pessimism and guilt all slam into me and my wall and my shell.
I suppose I could say I am happy. I feel happy.
But... what is happiness?
"Happiness is a mental or emotional state of well-being characterized by positive or pleasant emotions ranging from contentment to intense joy." Sure, I feel those things. However, there is a strong undercurrent of the exact opposite.
Brains, man. Brains are wild. Brains are weird. Brains are so complex. One day, I want to have an MRI and see exactly what my brain is doing. I want to sit with multiple brain specialists for hours on end, and just... talk. I want to talk about my brain.
Brains, man.
brightlotusmoon: (Snow White Blood Red Light)
It was 1:40 in the afternoon by the time I finished this post; I began at 1:09.
I woke up at 11:30 only because my husband roused me and put a can of energy drink to my lips while helping me lift my upper body, right before my cat Rose sat on me and licked my whole face, until I managed to fall carefully off the edge of the bed, hobble to the bathroom, and take a hot shower while leaning against the wall. Wrapping my hair in a towel at least helped stretch my neck and shoulder muscles. I stumbled back to the bedroom, got partially dressed, swallowed my morning drugs and supplements (Trileptal, Klonopin, Ultram, Picamilon, L-Tyrosine, Guarana, Hyaluronic Acid, Ashwagandha, Devil's Claw, DMAE, Raspberry Ketones, Sea Buckthorn) with coffee (made with cocoa, milk, cocoa, sugar, and cocoa). I got fully dressed fell onto the bed, struggled back upright, performed very gentle exercises reminiscent of certain basic yoga poses with extreme modifications, pulled some muscles in my lower back, applied heat massage, complained to my cats out loud since they couldn't tell me that my only limits were mental, bad attitudes, set by myself, because my cats loved me without telling me how to do things.
And so now I am sitting at my work desk with my cocoa coffee, Futurama via the Roku box on my 20 inch flat screen TV, the fish tank full of happy serene fish doing happy serene fish things. The codeine and baclofen I just took have taken effect, and I feel human. You know what it's like to not feel human, or normal, or easy, right, internet? Are you sure? Because I see so many articles about how easy it is to break limits, or not even have limits by - get this, ha ha - pretending you don't have limits. I just wanted to show you what my days are like. Because it's going to continue. Soon, I'm going to take afternoon supplements (MSM, Biotin, Inositol, Noni, Mangosteen, Goji, Pau D'Arco, Shilajit, NAC, and the drug Soma - and if you worry that I take too many pills in a day, I am going to laugh very loudly and point to all the people who take even more pills, by which I mean prescription pharmaceuticals alone because supplements don't work for them).
And then I will gently exercise some more, and have I mentioned that through all this I write and edit fiction stories, that novel I sent to a major publisher and agent, blog posts, and long discussions with beloved online friends? And I will read three books at once, maybe four, bit by bit, and since my husband is actually home from work I will spend time with him. And then in the evening, I will take my nightly medicine (Ogestrel-Hi, Trileptal, Zoloft, Soma, Apple Pectin Fiber, Chia Seed, Passion Flower), and crawl into bed like a bruised person, hopefully make fantastic love with my husband and have a wonderful, pain-relieving orgasm or four that will help me sleep blissfully (because sometimes it hurts too much to have sex but I do it anyway because it counts as medicine). And then I will wake up, either to see my husband off to work or to rouse myself, probably not until after 10:00 AM or so, and it will all continue, probably with additional errands and house chores.

There it is, internet. You have now seen my daily disabled life. I got lucky when I was approved for SSDI in 2012; I am lucky that I get enough monthly payments to keep me going alongside my husband who works himself bruised. I am lucky that all my limbs actually work, even if they hurt constantly in various ways. I am lucky that I haven't been to a hospital since 2007, and that was for a concussion and seizure. I have a lot of luck on my side. I also have a lot of limits. So, dear internet, please do not tell me what I should do with my limits unless you mean to help me move those limits a little higher so I don't need to push, I just need to move up more. Pushing my limits is fine, but I would rather move those limits up more so I have more room to go before I run up against those limits again.

Ah - I forgot to add that on the days when depression and anxiety attack, I am often physically unable to do much for several hours. But nobody needs to hear about that. Clinical depression is still stigmatized so severely that I still feel very uncomfortable discussing it. Also, I didn't mention the tiny complex moments when the cerebral palsy trips me up in many ways, because that would take forever. And I didn't mention the specifics of epilepsy, or fibromyalgia, or any neurological and neuropsychological conditions like ADHD Inattentive and OCD and Dyscalculia. Nor did I mention the specifics of fibromyalgia or various nerve issues, because who cares? That's boring. But it is all there.

Also, for those wondering why I take raspberry ketones, which have been touted as some sort of weird weight loss miracle:
They are actually highly antioxidant, a brain tonic, an anti-inflammatory, slightly analgesic, full of good omega fatty acids, and good for digestive health, with some research showing that it can slow cellular aging.

And I didn't mention the daily skin moisturizing. If I don't apply specific healing oils and extracts to my face, neck, chest, hands, arms, and legs... it's not a happy day.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
Let's see. *fingercounting* Sleep seizure, postictal migraine, pulled muscle in my neck, extreme hypertonia with hemiparesis and ghost nerve sensations in the left arm, hip pain, sciatica, chondromalacia patella, TMJ, difficulty swallowing and speaking due to spastic ataxic cerebral palsy complexities, ankle pain due to tripping over my own feet, right wrist pain due to ulnar nerve entrapment, mild asthma attack, difficulty working both hands, hay fever, swelling in right knee...
And of course the wonderful fibromyalgia flare.
*fingercounting* Eighteen distinctive symptoms. So far.
Pain level: Eight on a one to ten scale.
Oooh, eight! My favorite number and also the infinity symbol when turned on its side! *clapping* Clapping hurts, but fuck it. *more clapping*
Thank you, pills and special stretching and mind over body quantum magics. I have no idea what Normal is right now, but at least I am conscious and moving. That is a wonderful thing. I still win.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
Well, I am still feeling that bizarre euphoric buzzing all over. My brain is sparking all over. Tiny baby neural pathways are weaving and dancing around dead and damaged parts to form brand new tinier baby pathways. I can see them. I can feel them. Blue and purple in all shades. Each with its own sense of emotional self and frequency. Which is the point. I am still feeling symptoms of chronic pain and all. But I am starting to form this conscious communication with the whole consciousness in my body, which I have never done before. This is after just one session of craniosacral therapy with Feldenkrais Method. The therapist said to grab on and hold that feeling for as long as possible, try to direct it, keep communicating, keep listening. No fear, no worry, no fighting, no anger, no judgement, no upset, no anxiety. No judgement. Just let go. Just let be. I am going to do my best.

From now on, whenever someone suggests I try a method they think will work, I will thank them and smile, and it doesn't matter if I never try their method or take their advice. Nothing will matter except listening and communicating and understanding and knowing the inside of myself. Because I've been there. That's where I went during that altered state. Pulsing blood vessels and veins and fibrous tissue and muscles and skin and bones and brain matter and and and everywhere. I can't come back from that without being changed or altered. I'm more ME than I think I have ever been.

I will always have these disabilities. Craniosacral and Feldenkrais therapies will not make them go away. But the therapies will allow me to work with MYSELF, deeply, powerfully, intensely. And that is all I want. I don't care about finding a cure or being fixed anymore. Maybe one day... it will just happen on its own. Just because. I'm not waiting for that day.
I'm just going to live. And communicate. Hello, body. A pleasure to meet you.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
Craniosacral therapy with Feldenkrais Method.
So, wow. Yeah. Like, WOW. Up to eleven.

It was such an amazing, indescribable thing. There was the usual craniosacral bit, and Peggi was amazing. And then, very suddenly, I... wasn't there anymore. It was not an "out of body" experience. It was an "in body" experience. I still can't find the words. I felt myself inside... inside someplace. Some-me. I was electric. I was a neuron, perhaps? I don't know. I don't KNOW. Peggi spoke, and my eyes snapped open, and for a minute I didn't know where I was. I was groggy, but filled with a weird energy, a crazy intensity. She told me I had entered an altered state of consciousness, that it was normal, that I should just rest. My brain felt... settled. My body felt... settled. Aligned? When Peggi helped me off the table, my pelvis shifted and aligned all on its own and my posture became practically perfect. It felt bizarre. I still had pain, but Peggi said that was normal. She said that the goal was to communicate, to be conscious of my body, to understand my pain and my disabilities rather than fighting. Listen, learn, grow. If my pain asked for a certain drug in my arsenal, a certain supplement, a certain exercise or stretch... I needed to listen.

My synesthesia is still going wild. Colors and sounds are emotional. I need to pull back a little. So much conscious energy. So much power flooding all these parts of me not used to having all this energy and spark. Mom suggested writing everything down and recording the length of time it all lasts. A few days. A week. Two weeks. I plan on seeing Peggi again next month.

So, yeah.
I can't even.

It is not my place to say if it is a good treatment method for anyone else. Maybe, maybe not. You are not me. But all I can say is that whatever Peggi did on this very first treatment did something extraordinary, and I think it really will help in the long run.

I crave more coffee now. I just... do. Already had chocolate. My body wants what it wants. I shall listen.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
So, recently I have been doing these very specific limb stretches that were taught to me by my childhood physical therapists to loosen me up, since the cerebral palsy was extreme when I was a kid - I mean, for mild CP, you know?
But today has been a particular hell on my body. And no matter how long and often I stretched, nothing actually helped... until I took a combination of baclofen, tramadol, magnesium, skullcap, vitamin D, and vitamin C. Then it got better.
I was casually chatting with an old acquaintance and I mentioned what I was doing. The acquaintance immediately lambasted me for "giving in to evil Big Pharma and holistic quackery" and "being brainwashed into thinking those poison and placebo drugs help" (actual quote).
After I picked myself up off the floor and finished laughing and wiping away tears after more laughter, I typed, "Aww, sweetie! Thanks for looking out for me. It's so nice to know I'm loved! Anyway, I gotta go take my nightly seizure drugs and antidepressants and birth control pills and relaxing supplements. You know, because I am a member of the League of Evil Pill Taking Citizens. Don't tell anyone, but we're going to take over the world by treating our chronic illnesses with drugs and supplements until we feel better, and we're going to tell other patients what we're doing so they can make informed decisions for themselves. I can't give you specifics or I'd have to kill you. I've already said too much. Uh oh, my superiors are messaging me. Gotta go!"
I closed the chat window and signed out, and so far he hasn't replied. I'm currently coming up with a better, sillier name for this League. Just to fuck with him. I know I shouldn't, because it's cruel. But seriously. Whut. LOL.
Back to stretching. It hurts, but in a really good way, you know? Ahhhh, stretching! Also, the stretching brings back some amazing childhood memories. I remember being in a room with a blue floor, trying to manipulate tiny plastic figurines with my left hand while rolling on one of those huge exercise balls. When I was little, I called it torture. Now, I want one of those huge balls in my writing room to work out with.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
Some people have been asking me why I wear so many specific bracelets in varied order. It isn't because the stones are beautiful, though they are. It is for neuromuscular and sensory processing balance. See, since my left arm, affected by spastic ataxic cerebral palsy, often feels ghost-like, I wear multiple gemstone stretch bracelets to give weight to that arm, so I can feel that weight, look at my arm, and think, Oooh, pretty stones, and oh, right, I should use this arm. Raw amber, charoite, lepidolite, kyanite, tourmaline.
On my right wrist, the balancing act is more of a counterweight. The raw amber, polished amber, fluorite, and lepidolite help me concentrate on my total physicality. I am inside my mind too much. My body needs me just as much, even more.
It is the same reason I wear gemstone rings: charoite, lepidolite, seraphinite, kyanite - the gemstones that work best for me, alongside amber resin. On my left hand are my green gold wedding ring and my inherited yellow gold band. On my right hand is my heirloom engagement ring. I need balance, once again. So I wear a ring on my left index finger and two rings on my right middle finger. Balance is vital for me with my particular set of neurological damages. It helps that all these stones have metaphysical properties that work perfectly for me.




I do wish my left hand would not tremble so badly, even when propped against a surface. But that is what I live with and I respect it while I seek to improve and strengthen it.
brightlotusmoon: (Default)
Well, deep tissue massage causes my lower back to spasm and tense up so severely that I can barely stand and I can't walk without looking like a penguin. That's cerebral palsy for you. The therapists are trying to ease my muscles and nerves into a position where the muscles feel okay being relaxed and loose after massage.
Adam was worried he had broken me after said massage. But then there were floor exercises and stretches, and the best one involved him lifting me up by the ankles until my entire spine was off the floor and stretched. Then I slept in a back brace. Also, there was much sobbing and hobbling and screaming and twitching and things.
So, right, everything still hurts. Thank Soma I'm feeling better.
brightlotusmoon: (Default)
Oh, gods, tonight has been a Baclofen plus Codeine night, and I may need Soma shortly, two hours later. I hate that. The medicine makes me feel wonderful and euphoric, but it is only because the pain makes me feel so miserable and horrible.
My happy non-medical relief has come from watching the Science Channel with my beloved science-minded husband and discussing quantum physics in science fantasy.

I've painted my nails with Divine Wine from Sally Hansen Nailgrowth Miracle Nail Polish, which is a deep dark blood wine red with golden sparkple. I will be wearing a red dress and red lipstick after all. I always wind up applying too many layers in general. I've packed Natural Sienna, from the same collection, a deep milk chocolate brown with deep antique bronze sparkle. I think Divine Wine, Natural Sienna, Perfect Plum, Forbidden Fudge, Mighty Mauve, and Beautiful Berry are my favorite shades from the Nailgrowth collection.

Tomorrow, Adam and I will have plenty of time to finish packing and run errands. I've been tossing random paperback books into my large luggage bag, books I've needed to finish anyway. Ray Bradbury, Neil Gaiman, Seanan McGuire, Catherynne M. Valente.
I am still thrilled that I don't feel any anxiety - yet.

Tons of meditation, often while performing the gentle stretching exercises from physical therapy.
brightlotusmoon: (Pixie Model 2)
Good idea: Taking a pleasant three mile walk (limp) (walk-limp?) along with a short bus ride, to get exercise and a workout.

Bad idea: Doing this with a pounding headache that eventually leads to vertigo, neck stiffness, sinus pain, Raynaud's flaring, fibromyalgia flaring, incredible spasticity, and hobbling while leaning heavily on a cheery rose cane.

So, perhaps yesterday's seizure with head collision, mild memory loss, and brain reset was slightly more interesting than I'd though. (My brain likes to reset a lot. My loved ones and I make jokes about this.)

Also? My life-long hypersensitivity caused by that three month premature birth and brain damage? That can fuck right off. I was so cold that by the time I got off the bus to my community, I was shivering and felt trapped in a freezer. That is just not fair.
I need to work on personal warming techniques, because nothing really helps if I get past a certain level of cold.
brightlotusmoon: (Pixie Model 2)
*deep breath, sigh*
Okay. Okay, yoga fanatic friends. I need you to do something for me.
I need you to STOP telling me how [insert yoga form] will change my life or heal my pain or [insert miraculous treatment of symptons]. STOP. PLEASE. I don't wanna. I don't care. I am doing a special form of physical therapy. And then maybe, much much later, maybe, maybe, I will take some sort of yoga for disabled people class. Or tai chi. Or something. (But never Bikram, because what hello you want me to do what in how much heat?) But I really don't need or want anyone bouncing in my face with "Oh, wow Jo, you really need to try this yoga form! It is so lifechanging! It will heal you in so many ways! I have connections! We will have so much fun!"
*deep breath, sigh*
Yeah. I love you, but no. Not now. So do shut up.
Also, I have been seeing so much of that specific enthusiasm on some of my fellow cripples' FB walls and blog comments, and I have kept my mouth shut because it is not my business. But, guys, really, stop trying to fix the world just because you discovered something that people have been doing for thousands of years. I quit doing that after I realized how fucking annoying it was. Because it truly is fucking annoying. Unless I ask, do not offer. Just talk about how it has "changed" your own life. If people are intrigued, they will ask. I promise.
brightlotusmoon: (Pixie Model 5)
Now I'm just really tired.

I woke up on my back with such severe lumbago that my entire lumbar area felt smashed by hammers. So I cried and screamed and panted all through clenched teeth for a while, did that turtle thing where I rocked back and forth until I was on my side, curled up in a fetal position, inched my way to the bed's edge, and let my body fall until my feet touched the floor. Then I hobbled to the mini fridge, grabbed my creamy cocoa coffee, took it to my dresser for my pain pills, took my pills, then did a ton of stretching.
And that is how Joanna wakes up every morning.

And now that the caffeine has been working alongside the pain pills, I feel better.
Also, if I don't have coffee, I have superfruit energy juice or caffeinated drinks at all times. Often I use a food grade oil serum to mask the bitter tastes of the pills, which my cat Rose then asks for after I'm done. I pour a few extra drops in my palm and let her lap it up. It makes her fur smooth and glossy and her eyes shiny.

In conclusion, chronic pain is a terrible horrible no good very bad thing, but at least I can manage it well enough. I would like to thank pharmaceutical companies, supplement companies, holistic remedies, nutritional food medicine, and exercise ideas.


brightlotusmoon: (Default)

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