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.
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: (Default)
Hello, Zanaflex. You definitely seem to be a great replacement for the baclofen. I think we shall get along splendidly. (Oh, I hope I won't have to add disclaimers about organ tests and knowledge of organic chemistry and pharmacology. That got annoying on Facebook.


Posted via m.livejournal.com.

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


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

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

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

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

These are just some of the articles. I can give personal insight as well. It's very fascinating. "

Aii.

Apr. 24th, 2014 01:39 am
brightlotusmoon: (Asha)
Nnngghh. No. Nope.
*breath*
PAALSYY. *fist-shake*
*also literally*
*also thumb in palm, finger flexion wrist flexion, shoulder internal rotation contracture forearm pronation, elbow flexion, clonus... plus spastic hypertonia anyway and also fibromyalgia flare, also stabbed hips. Because fuck everything, that's why*
...*mutter*

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

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

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

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

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

I am typing very very slowly with two fingers, sometimes more, as my hands unfreeze and unclench and attempt to loosen with the help of Soma and stretching. Everything is so so painful.

Earlier, Adam came back from errands with four pounds of crab claws for dinner. After over one hour of cracking and manipulating the legs to get my own two pounds meat, I felt my body begin to clench, spasm, tighten, and lock so quickly that I began having difficulties even with speech. My hands clenched, fingers clawed; my elbows and knees locked at a bent angle. Raynaud's Disease hit my fingers and toes. My tongue and throat muscles began to spasm, which, while fairly normal to me, might probably alarm people unused to it. I had to repeat words, stutter wildly, and pause frequently to get simple words out. I cried mainly because of the pain and frustration, and conveyed to Adam that he should probably wash dishes. He told me to sit and rest and that he would take care of everything; after all, he was around for my advantage. I staggered my way upstairs to take the Soma pill, do some healing stretches, and engage in deep breathing. My bent elbows gave me some slight advantage in slowly changing my shirt. I maneuvered back downstairs and managed to scoop the cat litter, again slowly.
I am now on the couch feeling the effects of the Soma spread, feeling individual muscles begin to loosen and unclench and relax, like a bodywide sigh and breath, like a deep physical meditative release. The sciatic nerve is still shocking me a little, but it is getting a little better. I don't know where I would be without the Soma right now.

I could talk more about what happens to me when the severe hypertonia floods me, but my hands are getting tired. If anyone has questions, I would be happy to answer them.
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.
*shrug*
So, right, everything still hurts. Thank Soma I'm feeling better.
brightlotusmoon: (Default)
Yup, the Baclofen is still working, and I am still in shock about it. I am really really not used to my left side feeling this loose and calm. Not even any tiny spasms in my fingers. Plus, I can drum my fingers on a table with each finger individually and with almost no pain (!!!) - that was always my main indicator. See, it's fairly simple to drum your fingers, right? Not my left hand, since all the fingers would hit the table at once. I could never get them to hit one by one. But now I can, even if it is very very slow. And you know how most people can touch each finger to their thumb fairly quickly? I couldn't. Now I can. So, erm, wow?

This is insane. I feel as though this is wrong somehow. This isn't me, this isn't what I'm used to. I know I will wake up tomorrow and things will be normal again, and then I will take the Baclofen in the evening and everything will be weird and insane again, and the cycle will continue. I have no idea when this "temporary new normal" will stop freaking me out.

Also, next month when I see the pain specialist again, I need to discuss this ridiculous pain in my left wrist. It is sharp, stabby, hot, explodey, electric, and localized. I'm guessing repetitive stress pain, but I'm not a doctor. We'll see. I still need to go get X-rays on my knees.

This is so weird, having such a newly active medical team working with me. Awesome, but weird.
brightlotusmoon: (Default)
Well, shit.
I feel another depression episode starting to happen.
Hate this. Hate hate hate.
Then again, I am a week away from my menses. But I can't blame that entirely.
Stupid self. Stupid body. Stupid brain. Fuck you, every part of me.
I want to cry. But the Soma and Flexeril has made me too relaxed. Pain is eased, anxiety is eased.
But you know when you can feel that heavy darkness creeping in, jaws open, talons clicking, eyes glowing. I don't want to eat. I don't want anything. Thinking of sleep makes me shiver, but I don't want to be awake,
I have an appointment with my pain specialist tomorrow, or rather one of the main nurses, and I will mention this.
Loved ones keep asking about the novel and the short stories. When will I finish writing anything? Will I submit anything else that might not get rejected? I cannot think about that without crying. I wrote pages and pages of something, and it might be a story, it might be a chapter. I will edit it later this week.
My cats adore me. My husband adores me. He will be home from out of state jobs tomorrow, or the day after, or who knows. It's always a surprise. It's hours and it's money. Bills will be paid. We miss each other, but we've been doing this for over twelve years, it's routine.
I need to meditate. My head feels so dark. Time for Klonopin and deep breathing exercises.
Fibromyalgia and spastic hypertonia are ruining me. I feel punched and stabbed in the gut by fire and stone and electricity. I can't cry.
I will hug my cats and my pillow pets, and I will brush my hair until my scalp releases endorphins, and I will read books, and I know I am loved.
My muscles are so stiff and sore and it is so hard to speak with the mild dysphasia, so I write and write.
I know this will fade soon, this will end. I will make it better. I need to care about things, I need to want to do things. I need to remember I am a beautiful soul. I am writing this now, so I can look back and remember, before a seizure strikes and I think I am falling all the way down, dirt in my mouth and glass in my skin. I will medicate. I will meditate. I will supplement. I will do everything I can. My brain will gradually soothe itself. I will help it. I have to. Poor sick brain, poor demolished neurons, poor damaged body, and it could be worse, and it could be so much worse, and I know that forever. So I push on and on, and I do everything I can to love, love, love.
Just love.

I am sorry about this. I swear I will blog about happy shiny things as soon as I can.
brightlotusmoon: (Default)
How it all began:
https://www.facebook.com/photo.php?fbid=10151013741440684&l=48f6e7bcb2
Click on the '1 Share' button to see comments that inspired the title of Peaceful Dragon.

Copied from Facebook.

***
Now I am too exhausted to... what was I saying?
I'm going to bed now.

Also, someone just called me a "Mediterranean Warrior Fae with coffee cognac amber eyes." That makes me feel happy, and also strengthened.
***
Today is a day of pain too extreme for mere words.

But that's why my favorite eyeshadow is called Psychedelic Sister.

My mind has special places in which I can safely lose myself during transcendental meditation, in which my imagination and sensory perceptions can be shaped, molded, and altered bit by bit to work alongside damaged neural pathways, to become fully psychoactive on my own, through my own private power.

This will take years beyond years, but I have eternity in the spirit world. Sometimes my senses are surrounded by and colored in various shades of purple, with color shifts, duochrome shimmers, and iridescent glimmers of every color I can think of.

I know Psychedelic Sister is just the name of a shimmery deep amethyst cosmetic pigment, but it has a special meaning. Just like various other eyeshadows.

Urban Decay
Loaded: Deep metallic emerald
Evidence: Shimmery deep navy blue
Hijack: Deep metallic teal
Lost: Medium metallic brown
Snakebite: Shimmery dark bronze
Shattered: Shimmery gold turquoise
YDK: Shimmery cool bronze
S&M: Shimmery steel gray taupe
Midnight Rodeo: Glittery silver taupe
Maui Wowie: Metallic golden beige
Last Call: Metallic sugar plum
Darkhorse: Shimmery deep mocha
Half Baked: Shimmery golden bronze

Too Faced
Midnight Mist: Midnight Sapphire Violet Duotone
Poison Orchid: Midnight Amethyst Gray Duotone
Firefly: Shimmery Antique Gold
Petals To The Metal: Metallic Brown Blue Duotone
Violet Femme: Shimmery Lavender Gold Duotone
Enchanted Garden: Golden Espresso Duotone

Maybelline Color Pearls Marbleized
Downtown Denim
Persuasive Plum
Lawless Lavender
Navy Narcissist

It really is amazing and powerful to me, how color can help alter the way I see myself. The instant I apply concealer or foundation, it begins.
Urban Decay Naked Skin Foundation in Shade 2.0
It Cosmetics Bye Bye Concealer in Light
Lauren Brooke Creme Concealer in Warm Light
Lauren Brooke Creme Foundation in Warm 2
CoverGirl Olay Tone Rehab Foundation in Classic Ivory
Raesin Images Creme Foundation in Linen 2
Korres Quercetin Oak Concealer in Fair

Obviously this is a lot, but my memory is quietly being gently destroyed bit by tiny bit. I always write everything down. All it matters is that I can alter my palette constantly and see myself in new colors, in new ways, every day. I am art.
***
In the lair of the Peaceful Dragon.
http://www.facebook.com/media/set/?set=a.10151018197555684.415074.640545683&type=1&l=74078a637b
http://www.facebook.com/photo.php?fbid=10151018374415684&l=99512fe686
Filled with strong colors and shiny things.
***
Thing I have most recently learned about myself: When I am having a pleasant conversation on Facebook about something enjoyable regarding a status or a photo, I should feel absolutely no remorse in deleting critical, snide, or rude comments that have nothing to do with the conversation. I have learned that if I really want a critical opinion, I would be happy to privately message the critic and figure out why they decided to be critical in the first place. I like learning new things about myself!
***
Stupid news: Having a temperature over 99.1 and being ragey over ridiculous whims of ridiculous body and ridiculous brain.
Fuck It news: Planning the weekend no matter what. Peaceful Mediterranean Fae Dragon Warrior is fucking peaceful, damn it.
Really Fucked Up news: Actually literally being too weak to finish editing these fiction stories or do anything but limp and stumble.

Time to crawl into bed and rage against the dying of the light so hard that in every dimension beyond this one I erupt into a wild flare and shine brighter than a fucking supernova - until every spirit, alien, and interdimensional entity all rush to gather around, break out the sunglasses, and share popcorn.

Peacefully, that is.
***

I will be a good Mediterranean Dragon Princess. With many shiny things. Including coffee and chocolate and honey, and chocolate honey coffee.
brightlotusmoon: (Default)
This sums up too many things for me. It shatters and heals my heart.
Thank you, Shinga.
http://shinga.deviantart.com/art/Into-Dust-326278238

The body sings in harmony with the brain since the beginning. And when the connections are shattered and the harmony is broken, the only thing left to do is write a new song, even if it takes until the end.

*I cannot sing. I cannot dance. But I can write. I can speak. I can dream. And I can fight.*


http://www.youtube.com/watch?v=aJ4RMyI90_o

I don't want to describe the pain today. I don't want to describe the seizures this morning. I cannot stop thinking about the dreams when I slept, the insomnia until four in the morning, the anxiety attack upon waking, the desperation to feel happy, the lack of appetite, the desire to feel comfort.

The best things about today:
All three cats surrounding me on the bed.
All three cats following me down to the living room, with Luna trilling, mewling, chirping, barking, begging for hugs.
Still being able to smile and be amused by Futurama and My Little Pony Friendship, which I think have been saving parts of my sanity.
My amazing husband calling from Las Vegas to tell me that he will be home a day early - tomorrow morning, in fact.

And so, I drink my superfruit smoothie, swallow my medications, perform my meditative magics, and try to mend my cracked rhythm for another day.
brightlotusmoon: (Default)
I think I had my first atonic seizure last night. Fully triggered by overwhelming fatigue. My body completely gave out. My muscles were truly fatigued. The only way I could move was through willpower and conscious effort.
I was powering down my laptop after promising Adam I'd come to bed for sex, when without warning my head hit the arm of the couch. My next memory was of stumbling out of the bathroom with my eyes closed because my whole body was too heavy and weak, banging my head on a wall, staggering into the bedroom and clutching dressers to remain upright, then collapsing halfway onto the bed. I managed to drag myself to my pillow, fully clothed, struggled to get up and pull my clothes off, then collapsing fully backward onto Adam's legs. I literally could not move without forcing myself. He helped pull me up to my pillow, wrapped himself around me, and stroked my hair and face while I sobbed and apologized over and over. I kept reaching up and patting his face as though I were blind, and he kissed my fingers. I began lightly spasming all over as my muscles remembered their natural state.
When I fell asleep, I had hideous dreams of a creature that swallowed galaxies whole, so massive and horrifying that it would frighten Lovecraft to death, and dreams of being crushed alive.
I woke up naturally just before eleven, realized that I was physically able to move as long as I staggered and balanced myself, and then when Adam went into the upstairs bathroom, I somehow made it downstairs to the half bathroom and shivered while my body released everything in my digestive tract; it still felt like part of a nightmare.
I have no idea how I got back upstairs. Adam soothed me while I tried to actively figure out how I was going to take a shower, shave, clip my fingernails, and get dressed. He figured sex might help; it actually did. I was able to do those things while still in vertigo, even take my medications, and the hot shower woke me up and eased my pains enough so that I could get downstairs and help with breakfast. I am still obviously postictal, but feeling well enough to pretend to be fine. This long post is probably some proof.

To my fellow Spearwives: Boadicea, Baby, and thank the gods for good pharmaceutical drugs and supplements that actually work. And hot showers. And sex. And stretching. And meditation. And cats. And love.
brightlotusmoon: (Default)
Sigh.
So, that was either a very weird complex partial seizure or a rare psychic experience. Or both. Regardless, I'm off to take some medicine and rest my brain. I think I used too many spears.

I do not remember much. What little I can recall involved synesthesia turned up to eleven when I closed my eyes, hyperactive shapes and sounds rushing into my brain, and a deep sense of expansion far beyond anything I could describe - like being in a craft flying toward outer space itself; a sense of G-forces pressing me down until I spiraled into darkness and then saw nothing but brilliant dots of light and sensed nothing but trillions of unexplainable entities, everywhere, all at once. There was so much heat and cold simultaneously, blackness and ice and fire without air, crushing me into a bare essence of a sentient being. It was as though I were coming apart atom by atom. I was screaming without sound. When it stopped, I couldn't hear, see, feel, or speak for a minute or two. When I managed to open my eyes, I was lying twisted against the back of the couch, gasping heavily, sweat pouring down my face. I truly do not know what happened. I am struggling to hold on to even a tiny bit of that memory, but it is fading even as I write this. I'm sorry.

The transcript for the Futurama episode "Godfellas."
Bender's conversation with the God Galaxy is the main reason why this is one of my favorite episodes. It is also part of why, ten years ago, I declared myself a pantheistic polytheistic polyagnostic eclectic pagan witch who observes humanistic paganism and spiritual humanism. It is also part of why I am convinced that magic and physics go together like limes and coconuts.
http://www.futurama-madhouse.net/scripts/3acv20.shtml

FYI, this particular postictal state (after seizure state) has me somewhat energetic and verbose as well as mildly hypergraphic, despite the migraine and burning muscles and spastic limbs and aching nerves. I am going to try and direct that energy into writing chapters and stories now. Questions are welcome.

I also wanted to add a photo. I have gotten into a habit of photographing my face after certain seizures, to document the physical aftereffects even if I am the only one who sees them. I have a few friends in the medical industry who might understand why I do this. One such friend mentioned that in this picture, my usual spastic imbalance due to cerebral palsy is not there, meaning that the seizure wore me out so badly that my facial muscles went fully lax and exhausted, with no spastic hemiplegia on the left side. My normal is gone right now, turned into everyone else's normal. It does make me sad, because now I don't look like myself; I look alien. My face doesn't look imbalanced or shifted or compensated. That seizure obviously took it out of me, because I am also fatigued and lethargic beyond description.
But this is very good to know, so I can keep an eye out for future seizure effects.

brightlotusmoon: (Default)
I am still trying very hard to figure out what the hell I did to get this crippling fatigue and joint pain today (answer: nothing), but I am waiting patiently for the current usual supplement cocktail to fully kick in: 1 B-Complex 100, 4,000 IU Vitamin D, 240 mg CoQ10, 1,000 mg L-Tyrosine, 600 mg Yerba Mate extract (yielding 48 mg caffeine), 500 mg Moringa extract, 500 mg Sea Buckthorn extract.
I am actually nodding off a little during typing, which is always irritating; but the wrist braces do make the typing more pleasant.
Futurama is on Netflix via the Roku Box in the background. Unlike the PS3, the Roku Box requires me to press OK to play each episode rather than letting each season continue automatically, which requires me being alert enough, which is helping. Also, laughing at funny things on the internet is helping.
My joints and muscles and nerves feel like shattered glass today. Sometimes the pain is enough to jolt me.
It could be the weather. Again.
On the bright side, yesterday's migraine has been fully relieved.
brightlotusmoon: (Default)
So, yeah.

Today so far has been a day of "Let's drug Joanna up with opiates, anaglesics, muscoloskeletal relaxants, caffeine, migraine remedies, skin hydrators, itch relief, cramp relief, nausea relief, anti-fatigue supplements, and focusing supplements."
I woke up at 11:30, felt sick, took a very long shower with very hot water, took half an hour to get dressed, then fell back onto the bed, where a cat inevitably sat on me and licked my face.
I went inside my brain to talk to my Frontal Lobe, represented by a stern, petite Eastern European woman with sharp cheekbones, multi-colored eyes, pouty lips, bronze skin, calico hair, sturdy curves, long hands, a sloped nose, and a deep voice.
"What about food?" I asked. "My digestive system is being uncooperative right now."
"I know," she said. "Go get that high-calorie nutrient-dense smoothie you bought at Fresh Market and then make an acai smoothie when you're ready. Later, try some plain cheddar and soup. I had a conference with the medulla oblongata about that. Don't take anything for the digestive stuff, by the way."
"You sure? Because you know the amygdala and I..."
"Yes, yes. But I mean it. You can drink some Pepto Bismol if you really want, but you need that nutrition. Go pick those cherry tomatoes out back, too. And the water. Keep drinking the moringa water and the sea buckthorn tea."
"Did the medulla oblongata tell you that?"
"Yes. Every part tells me everything."
I paused. "Can... can you make me hurt less?"
She bit her lower lip. "Well... see, the nociceptors tend to have minds of their own. Like teenagers and toddlers rebelling and tantruming. Well, also like adults tantruming. Have you ever seen a grown person throw a tantrum?"
"Of course. It's embarrassing."
"So... I can team up with some of my other parts to try. But keep in mind that considering our massive damage and dead parts, there is only so much we can do. But we can make sure to help you stay upright and conscious and able to respond to external stimuli. The limbic system is a little twitchy, though. It's making the hippocampus twitchy, too."
"Oh, hell," I said. "What about seizure warnings?"
She paused. "I can try. I promise I will try."
I nodded. "I know. I know how busy you are."
She smiled. "I'll keep an eye on the temporal lobes and parietal lobes."
I nodded. "Thank you, Lady."
"Just rest for now. Okay? Keep yourself calm. We will be here for you."
The Frontal Lobe representation held out her arms. I slowly moved forward, and she embraced my mental avatar. Her touch and body radiated cold and hot and kindness and love and severity and power and strength and control and understanding. I couldn't put the rest of it into words. I was a pebble at the bottom of a river, with ripples widening all around me.

My meditation ended. I opened my eyes and stretched my neck, and felt almost refreshed, except for the parts that hurt so badly I almost left my body.
So I sit here, typing very very slowly with what sections of my Neocortex will allow through all this fog, casually watching animated films in the background to relax me and give me humor. I am very cold, wearing a silk cardigan (when did I acquire all these silk cardigans anyway?) and considering warming up the house because the Raynaud's Disease is attacking. But I trust the Frontal Lobe to take control as much as possible.
We will see what happens.

(Also, if anyone on my friends list knows more about this sort of thing that I do, please feel free to correct me in the comments.
http://www.brainhealthandpuzzles.com/brain_parts_function.html)
brightlotusmoon: (Default)
You know, this makes a lot of sense for me, seeing as how I was deprived of oxygen at birth which led to brain damage and brain cell death and brain tissue death, which led to so many problems; and now my mother is recommending a doctor who specializes in this sort of thing, and now I think I am willing to be a canary or guinea pig. Although I think the website could be cleaned up a bit. It kind of shouts at me. And I shall remain skeptical of everything until I personally try it. We shall see.
http://www.majidali.com/oygenand.htm
Also, this one.
http://www.fibromyalgiahope.com/fibromyalgia-nutrition.html
Also, this one.
http://jintmed.org/Fibromyalgia%20ODD.htm

In general, there will never be an absolute "cure" for this syndrome currently called fibromyalgia. But I do believe strongly that its symptoms can be calmed, reversed, even put into a small remission of sorts. I cannot and shall not speak for anyone else who suffers from this condition. However, I will chronicle my own journey to see who and what can possibly ease my symptoms and bring about comfort in the best way possible.

Besides: I imagine that it's not exactly like that for everyone, that specific patients have specific personal needs. Best to find out what works for each of us; I've never been great at following exact instructions and models, anyway. Translation: Your Mileage May Vary. :)

And now, to meditate and reflect before bed.
brightlotusmoon: (Default)
A hypertonic state within epileptic postictal impairment is very aggravating. My brain damage is shouting. I appreciate the fact that I own two canes and am married to someone who knows physical therapy and Reiki therapy in regards to cerebral palsy. My left arm and left leg are spastic ghosts today.

A dose of carisoprodol has kept my muscles slightly loose, enough to try and stretch them. My facial muscles keep twitching; I hate that. Also, speaking and thinking require actual concentration. I feel ridiculous and stupid. I know it will pass soon, and I will recover fully, but time is dilated and everything seems so far away. I keep thinking I have done something wrong over and over. I know I haven't. It's just paranoia. I may wind up taking Klonopin just to stop the rising cycle of panic.

My muscles hurt. I may have already said that.

Shields

Oct. 12th, 2011 06:46 pm
brightlotusmoon: (Default)
I'm trying to figure out alternatives to the Spoon Theory. I recently learned some things about its author that disappointed me.
Anyway.

I am out of energy. Out of cope. Out of patience. Out of pain shields. I keep dropping shields. Sometimes my armor is made of nothing but shields made of various materials. When the pain becomes too much and too intense and too insane, the weaker shields start shedding first. I can't get them back until the pain stops. I've been hoarding my pain shields like gold, but I'm a very small dragon and right now I am very weak.

There is a five-pound weight sitting across the room. When I bent down to pick it up, the muscles and nerves in my lower back shrieked, my knees sobbed, and my fingers kept dropping the weight. It was stupid.
I need a nap. Maybe later I can actually exercise without feeling as though I will melt and drift away.

Grr. Argh.

Profile

brightlotusmoon: (Default)
brightlotusmoon

March 2015

S M T W T F S
1234 567
89101112 1314
15161718192021
22232425262728
293031    

Syndicate

RSS Atom

Most Popular Tags

Style Credit

  • Style: Dreamscape for Ciel by nornoriel

Expand Cut Tags

No cut tags
Page generated Sep. 21st, 2017 11:12 pm
Powered by Dreamwidth Studios