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

Posted via

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.
But so far, Catherine Black may as well be me in a separate reality, if I had gone for neuroscience in college.

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.

These are just some of the articles. I can give personal insight as well. It's very fascinating. "
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)
Back pain back pain back pain backpain backpain backpain NNNGGHH.
It's the lumbar area, leading to sciatica down both legs. Of course, you know? I've got an appointment with my new orthopedist on January sixth, and we're going to get be fitted for true customized orthotics... although I am going to insist they be cushioned, if not highly comfortable. The ones I had as a teenager actually made my feet hurt whilst walking. I still have the left one from those days. It is not comfortable. I understand practicality and function, but still.
Nnngh. Back, hips, legs, knees, ankles. Come on, drugs, work faster.

When we came home from grocery shopping, I looked up at the stairs and whispered, "Mama's home, Rose." I had meant it merely for her memory, for her spirit that now lived in the house, free to leave the clay statue that was a vessel, as Adam had not bound her to it. Adam said, "She's still gone, sweetheart." And I knew, and I reminded him that it was just... oh, I couldn't even find the words. It was just for her ghost. But he knew. We held each other and he knew.

My friends have cried for me, I think, more than I've cried for myself. I will have pockets of moments in which I will break down in gasping sobs, but they are so quick and triggered. A brush that had moved through her fur while I was comforting her in her lethargy, before I understood what was really happening, tufts of fur clinging to the bristles that I may not remove for a while. My pillow, and the soft bean-bag type pillow behind it that served as a general cat pillow but which was generally used by Rose especially in the mornings. A bag of Greenies treats that I realized I no longer had to move to a high place where Rose couldn't grab it and tear into it. Sitting in this desk chair, now, and knowing that Rose will never jump onto my lap and rub her cheeks over my mouth. She will not curl up on the floor, waiting for me to announce that Mama is going to bed so she can lead me there and see me to sleep. Oh. Yes, I'm in tears now. Oh, babygirl. Luna is on my lap now, kissing me, nuzzling. In her own Luna way.

We will be adopting another cat. Yes. It may be sooner than anyone thinks. I've already dreamed of her. I've already named her. I already know her age range. But... you know, someones through the grief and the numbness and the deep deep shock and the horror of physical death, we know deep deep inside that even if it takes only a week or two to get another pet, it is nothing like a replacement. It just means that the throbbing empty hollow burning in our hearts might start to heal, just a little. Luna is still my heart and soul, my queen and my moon goddess, my precious love. Jupiter is still my beautiful big boy, my chatty feline child who brightens my day just by smiling. The new kitten, the new young cat, will never be Rose. She will be herself.
Rose is never coming back, not even in a new incarnation. I'm not even sure I want that; it might hurt too deeply. Rose herself was already the reincarnation of Adam's patchwork dog, Ralph. Rose spent five glorious years learning to love and be loved. In Buddhism, that is a vital thing. All animals understand this. It is slightly Jainist. Adam and I, in our eclectic paganism, are mildly Buddhist in various, often conflicting, ways. It is not possible for us to be fully Buddhist in any way, but eclecticism is a wide arena.

"Life is a journey.
Death is a return to earth.
The universe is like an inn.
The passing years are like dust.
Regard this phantom world
As a star at dawn, a bubble in a stream,
A flash of lightning in a summer cloud,
A flickering lamp - a phantom - and a dream"
brightlotusmoon: (Snow White Ruby Blood Dragon Witch)
[Originally posted in two disability forums and chronic pain groups]

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

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

And then there is this!

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

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

The fact that she hadn't even known about the Spoon Theory and had described the Spear Theory so well was also impressive in a very Jungian way.
Here are my blog posts tagged with the tag 'spears'. Feel free to browse. (the entry that started it all with my friend; aka "The Genesis Of The Spear Theory. Hi, Mandi!)

[Also, I had to save this somewhere...]
brightlotusmoon: (Pixie Model 1)
Oh, damn. I forgot to celebrate my first SSDI Approval anniversary on July 10th. Eh, better late.
Besides, as of August, I'll have my Medicare Part A activated - and I did turn down Part B, because I like Carefirst too much.
I hope I made the best decision for now, since it's not like I am so bad that I am constantly in and out of clinics and such. Right?

Also, I have so many random head and face pains. It could be so many things. Migraine, eye strain, neck pain, tension headache, dry sinus, jaw pain, cranial nerve pains, bone issues. Last night it was so excruciating I couldn't sleep. Finally, after Adam helped me with Reiki and massage, I muttered something about "dammit, taking drugs now" and got my two strongest prescriptions: Soma and Codeine/Tyenol. At 12:45, I swallowed them down with sea buckthorn oil to hide the taste and coffee to also mask the taste. I woke up again at 1:45 and there was some mild improvement, like some of the ice pickers had packed up and gone home. At 2:30, I glanced at the clock and realized that there were only a couple of little sharp, shocking stabs here and there around my nose and cheeks and skull, and I could live with that. I didn't even hear Adam's alarm at 7:30. I slept straight through until noon. Rose lay herself on my torso and nibbled my cheeks and jaw and licked me. Then I fell out of bed using the cane nearby, took my necessary pills (pharmaceutical and supplement) with that amazing cold-brew coffee with almost no acidity, took a long very hot shower, took more Soma and Codeine with Klonopin, stretched very very gently, and realized I would be okay to look at a computer screen for a couple hours at a time. Good.

I always knew it would get much worse and that I would fall so hard. But at this point, I don't even notice. The feathers are heavy but soft.
brightlotusmoon: (Snow White Blood Red Light Pale)
Oh, look. I almost threw out my back and I almost dislocated both hips and I almost misaligned a knee and I almost sprained a wrist and I almost tore a neck muscle. That's what I get for playing around in the backyard garden, on slippery slate and granite, while it is damp and drizzling.
However, 'almost' is a very important word. The most important word right now.

My left ankle hurts. My left wrist hurts. My right knee is absolutely screaming.
Braces, salves, balms, heating pads, ice packs, and good drugs are awesome!
I have several canes. I can use two at a time. I have at least one back brace and at least one heating pad and several ice packs. I don't need to actively go anywhere for a few days. I know self-massage in various ways - Reiki, Quantum Touch, Qi Gong, Shiatsu - which I adjust and manipulate to fit my own body. My personal meditative techniques for Mind Over Body work fairly well when I draw energy from various places.

Also! This right here is a fantastic example of my family's semi-famous Sloppy Luck.

Sometimes I startle myself at how well I manage to work on myself after unexpected injuries.
The one thing I'm missing is chocolate ice cream. I think I'll live. But I'll pout.

Also, this is going to bring about a mightily insane fibromyalgia flare. Yay?

Oh! Oh! Also, I DO ask for advice and stories this time. Especially regarding self-massage and meditative exercises. Maybe you guys can tell me something I haven't thought about. I don't know if I need to stretch or exercise! I don't know how to position my legs and knees! Should I take a break from typing? I wish for discussion.
brightlotusmoon: (Snow White Blood Red Light)

When the monsters are sleeping under your bed
They’ve crawled out from under and into your head
And outside the carcass, into your skin
And you need someone to keep it like it’s said

Your wishes into the air
So someone listens, someone is there
And you won’t know anything about it
Until you have to live without it

Chasin’ the fire for you
Light in the night in bed
Watching from high above you

If you can make it then you saved your eyes
It doesn’t matter if you closed your eyes before you wake up
I’ll keep you safe tonight ‘cause I’m a warrior
And I’ll fight, I’ll fight, I’ll fight, I’ll fight

Your ears are moving behind your face
Your arms are directing the time and the place
And you only have to do the travelling
You don’t have to design the engine

Doin’ the fightin’ for you
Breakin’ the walls down
Finding the right one maybe

If you can make it then you saved your eyes
It doesn’t matter if you closed your eyes before you wake up
I’ll keep you safe tonight ‘cause I’m a warrior
And I’ll fight, I’ll fight, I’ll fight, I’ll fight

If you wake up in darkness before the dawn breaks
There is a strength inside in this magic and mistakes

Chasin’ the fire for you
Light in the night in bed
Watching from high above you

If you can make it then you saved your eyes
It doesn’t matter if you closed your eyes before you wake up
I’ll keep you safe tonight ‘cause I’m a warrior
And I’ll fight, I’ll fight, I’ll fight, I’ll fight

If you can make it then you saved your eyes
It doesn’t matter if you closed your eyes before you wake up
I’ll keep you safe tonight ‘cause I’m a warrior
And I’ll fight, I’ll fight, I’ll fight, I’ll fight
brightlotusmoon: (Snow White Blood Red Dragon Witch)
You know those migraines that last several days and are low-level enough that you can do things but are still horrendous enough that you can barely brain due to pain?
This is compounded by more hemiparesis, more fibromyalgia flaring, more knee pain (both chondromalacia and notarthritisdamnit in the right knee), TMJ, neck tension, and hypertonia in my left hand. Cerebral palsy and its complexities = buckets of fun.
The cats are less stressed than I am. I don't even know why I am stressed. There is no point. I'm not the one moving the house around. I'm not the one repairing and replacing the kitchen. I'm getting exactly what I want with the kitchen/hallway floor, cabinets, stove, dishwasher, etc. Next week is going to be like camping out upstairs and using the living room as a mini kitchen until the handymen are ready to replace the carpet. I keep telling myself it will all be fun and awesome. My amygdala is yelling, "You are a cat! You don't like change! You get anxious when stuff gets moved around, because your neutral chaos is suddenly not where it was and you can't find anything!" and the amygdala has a very good point.
Meditative exercises are in order, and clonazepam, and such.
People on Facebook are still irritating me with the whole "Big Pharma is EVIL and all pharmaceuticals are POISON and also the greatest cure is medical cannabis!" I mean, I can't wait until Maryland allows for medical cannabis to be a Thing, so I can become a patient. However, I am not going to bash traditional Western medicine like that. Lives have been saved. Fuck you, ultra hippie holistic pushers. I wouldn't be alive to listen to your ranting if traditional Big Pharma hadn't been around the NICU in 1979. I'm all about holistic medicine balancing out pharmaceutical medicine. But there is only so much I can take from extremists on either side.
Funny, because one of my favorite current quotes - found on Facebook - is "The is a huge amount of freedom that comes to you when you take nothing personally." Unfortunately, since we are humans, this is easier said than done. I'm not a robot. I'm also an empath. When I feel insulted and slighted, I do feel the need to at least correct the person. You know, like when someone tells me I am filling my body with Evil Big Pharma's poison, when that poison is the best thing keeping me from falling into a seizure-induced coma or death; or the best thing keeping me from self harm from deep depressions; or the best thing keeping me from endlessly screaming wildly in constant violent crippling agony that I cannot describe. Supplements and therapies can do a great deal, but they cannot do what Evil Big Pharma drugs do for me. So, yeah. I don't mind being in the clutches of Evil if it helps me live my life well.
I try to not take things personally. It does free me from stress. It is easy to smile, nod, and brush off insults like nothing. Sometimes. But, look, we all have those days when everything is piling on us, our moods are dark and growling, we want to bite everyone who looks at us wrong. I don't care if you're a bodhisattva - human emotion runs wild. And that means that if someone keeps trying to push me, I will eventually keep throwing them off a cliff until they get the point.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
Well, I find myself in a sudden, abrupt, creepy Charybdis tunnel of depression with panic, a violent episode that is making me want to rip my skin off... which means that the fibromyalgia, hypersensitivity, synesthesia, and sensory processing disorder have jumped into the fray. I know the world is not ending. I know the world is not ending. I know the world is not ending.
I need my cats to nuzzle me and nibble my cheekbones and purr very loudly in my ears, because I know the world is not ending.

Klonopin, to me! Lepidolite gemstone, to me!

Best thing for me, might be contradictory... taking shallow breaths while rocking back and forth, knees to chest, because everything is fine, I am not having an out of body experience, all is well, my skin is not on fire, I am fine, my brain is not going to destroy my sense of self.

Someone tell me a story, any story.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
I often "cross post" between here and Facebook, since sometimes stuff I say there, in increments, can be transferred here as stories and ruminations.

Lately, I've been getting genuinely angry at many Facebook friends and acquaintances - and it takes a fucking lot to make me genuinely angry. Multiple people on my Feed have been reading and watching the internet and talk show versions of medical conspiracy theories and tabloids - technincally slightly true, definitely not completely true. "So, these doctors on this daytime talk show or YouTube segment or extremely biased blog are saying that almost every serious health problem in America can be linked to pharmaceutical drugs or the side effects from those drugs. So, have fun taking those deadly dangerous pills! I'm going to be all smug and condescending because I don't take any pills at all even though I probably should for medical conditions I refuse to talk about."

Have you ever had a triggering of your rage gag reflex? Not quite retching, but a mental version of "I am about to explode rage all over this!" because something has truly, severely pissed you off. That has been me over the last couple of days. Some very very intelligent friends have been reposting these ridiculous claims, and my response is usually double facepalm and "For fuck's sake, take everything you read and hear on these blogs and talk shows with grains of salt, please, please, please." Like... okay, I like watching the Doctor Oz show every now and then. Quite often, he is extremely insightful, helpful, and correct. But he is also trying to get high ratings. Same for that talk show The Doctors. Who also used to be Oprah's friends. A panel of four core doctors from different specialties talking about medical breakthroughs, things that are good and bad for you, et cetera. Apparently, a recent episode featured the ER physician claiming that pharmaceutical drug side effects were causing most of the country's medical problems. At which point I facepalmed, went online to trusted websites, and proved him essentially wrong with a few keystrokes. It turns out that after the episode aired, multiple physicians and specialists who were not mere ER doctors called bullshit and blasted the episode and the hosts for being irresponsible. Again, ratings ratings ratings. But so many Facebook friends are falling for it that I wound up "hiding" their posts because I was getting seriously insulted. Funny that this happened after I made a status post about how grateful I was for the pharmaceutical drugs I've been taking to help mitigate my conditions.

Look, pharmaceutical drugs are not the Best Things Ever. They have serious side effects for many people. They alter the body and brain in ways that can be more damaging than the conditions they are treating. BUT. For millions of people, they are lifesaving. They have treated the symptoms of thousands of crippling diseases successfully. For many patients, they are the only options, because holistic medicines, supplements, and alternative therapies haven't worked for those patients (and of course, holistic medicine is either The Best Only Medicine Ever or Quackery Placebo Bullshit). So, to say something like "I heard from a TV doctor that pharmaceutical drugs are the main cause of most medical problems" and to follow it up with a slap in the face like "Good luck taking your pills, guys!" is... a slap in the face. Especially if that doctor was being paid to exaggerate findings or to promote some sort of media, to gain readers or viewers. And especially if the people repeating these claims hadn't seen a doctor themselves in years due to lack of opportunity, fear, hatred, or simple mistrust of doctors - which makes me laugh my ass off. "I don't trust doctors, doctors have never made me feel better, but this one doctor said this thing and I believe it completely and so should you!" It is one thing to drink the Kool-Aid. It is another thing to splash the plastic cup of Kool-Aid in my face.

You know, this is why doctors practice medicine. Practice, not master. It is a practice. Many many times, they get things wrong. Doctors are not perfect. Nobody is perfect. Not even you. So, dear Facebook people, please double check your facts, get second opinions, and actually think about it before you quote what sounds like medical conspiracy theories.

In the meantime, I'm going to sit back, smile, watch silly cat videos, and take my evil pharmaceuticals and my quack herbal supplements that are all maliciously working wonderfully to effectively relieve the worst symptoms of my twenty separate medical conditions. Damn them! *nods*

Also, in May I have my first appointment with a licensed craniosacral therapist. Having had craniosacral therapy twice, with extraordinary results, I am eagerly anticipating this.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
So, I'm not going to fully describe the four distinct simple partial seizures, the Raynaud's flare, the lumbar and sciatic spasms that literally crippled me and put me on the floor writhing, the chondromalacia patella flare that was just purely evil, the spastic hemiplegic flare that left my entire left side feeling ghost-like, the fibromyalgia burning that I compared to nerves hooked on heated barbed wire and connective tissues touching a bonfire - skin included - the sinus and jaw pain caused by my generally being irritated, the depression, the twitching anxiety.
Details are pointless. But since I am a disability advocate, I will leave this open for questions and stories and understandings and commiserations and complaints, since a huge percentage of my Friends List is disabled in some way.

My female cats are taking turns jumping on my lap and nuzzling me, occasionally preventing me from getting up. Obviously I could remove the cats from my lap at will, but I don't want to, and also they kind of dig in because they really want to hang out. Fine by me.

Although, if anyone actually wants details, please ask. You never know.


Dec. 20th, 2012 12:23 am
brightlotusmoon: (Fae Dragon Alien)
Hey, every body system and entire central nervous system? Can you just... not, for a while? Can you just behave and be okay for a couple of weeks? Please? I don't like to beg, but... I need this, okay? It's important. I need you to stop feeling horrible. Can you try? Just try. Please. Please just try. I will do what I can to help, I will do everything I possibly can. But I need this from you. Just... be better. Dear brain-body and body-brain, just try to be better.

See, I am having a horrible migraine, a sciatica flare, a fibromyalgia flare, an anxiety attack, hypertonia and hemiparesis, lameness, neck stiffness, hip pain, jaw pain, and burning in my finger joints. But whatever. Whatever. There is a quote that I am humming like a mantra: "I know it has been tough, but I am still cheering for you, always." This right here is for everyone who knows and feels and deals and fights. I love you. ♥
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)
Also, everything still hurts so hideously that the pain has still gone from "ten" to "indescribable" to "Lovecraftian." And also I recently had a small seizure that involved some sort of sobbing similar to the cries of a wounded young kitten. I wish I remembered more, but there were only colors full of dark, and more pain, and there was howling in the abyss, and there was a woman holding me and singing until I came awake. Probably my inner pain guide creation, Serena; she's good like that.

I really must sleep.
I really must stop hurting first.
One will happen before the other, of course. Eventually.

Other things:
On our way back to Gaithersburg, the car broke down eighty miles from home, in Aberdeen Maryland near Bel Air. Adam managed to coast to the shoulder on I-95 and guessed that the transmission or possibly the torque converter had died or failed. After several desperate calls, we wound up calling Triple A, signing up, and waiting for a tow truck. The plan was to get towed to the local mechanic, have Billy meet us there with the SUV, and then pack everything into the SUV so we could get it all home. It all went well. Adam has tomorrow and Monday and Tuesday off, thankfully. The mechanic, Bill, won't be available until Monday, which means that Adam may need to borrow a vehicle from his boss for a few days, unless Bill can fix the problem quickly. We can pay for a new transmission if needed, and we can even try to buy another used car if it desperately comes to that, but Cloud is a such good car - a 1999 Ford Taurus station wagon with very few miles - and we don't want to give her up. Come Monday, we will learn her fate, and hopefully she will be fine. If not... sigh.

Other than that? My week was amazing. Spending all that time with my parents in their house full of art, made of art, breathing art, soaking up art... Dad gave us two of his older paintings from his 1970s surrealist period, plus a seahorse and oyster shell with a real pearl carved into dark slate. Everything was an extraordinary gift. My family's love is an extraordinary gift.
brightlotusmoon: (Pixie Model 2)
Okay, Internet. Here is what I want, and here is what I don't want:

I DO want someone to tell me that they are holding me from afar, that they sympathize. I want someone to say, "Oh, wow, I really understand. This is how I feel. This is how I've been feeling. Let me tell you what happened to me! And then let's talk about what you're feeling and we can trade stories about disabilities or fantasy or anything you want! And then we'll watch cartoons and eat chocolate!"
I want to be told stories. Especially fantastic stories and healing stories and comedic stories and disability stories. I want to lose myself in someone else's words, to pretend for just a little while that I am not weak and ill and fatigued and in so much pain. I want to really know that it is not just me.

I DO NOT want anyone to say, "Oh, that sucks, hey, have you tried X or would you try X or could you talk to your doctors about X? X could be a great treatment. In fact, this person I know just tried X and got better in a month! It could help you so much. Just try it!"
Guess what? I really don't care right now. In fact, right now I don't give a wild fuck about X to such a degree that if giant cures for everything were dropped in front of me, I would stare at them and mumble, "Come back tomorrow, I'm napping."

See, I myself have made suggestions and given advice, but I will try to only do that if a person has asked. I am not a hypocrite. What I am is really really tired, and not well, and exhausted, and irritated in general. Someone can give me advice forever, and I will roll my eyes and turn away right now. Because I don't feel well. And someone poking me and shaking my brain like a bulldog with a stick and insisting "Did you try this yet? Did you do that yet?" will make me snap and growl and possibly draw blood.

In conclusion, I just want to be told that I am loved, and that I will be better soon. It doesn't matter how I will get better, it just matters that I will feel better. Because guess what, Internet? I already know how to make myself feel better, and nothing happens quickly.

One more thing:
Dear Internet. Please stop trying to debate with me right now. My personal opinions, thoughts, and beliefs are currently immobile, and you will not convince me to join your side. I am far too weak and ill to bother with you. Go pretend you won. Here is your cookie. I'm taking a nap.
brightlotusmoon: (Pixie Model 5)

This is what a fibromyalgia attack, or flare, can often feel like. This is exactly how I've been feeling every single day since the beginning of October. So if someone over the internet mocked me about chronic pain, and I accidentally on purpose broke some of their bones using telekinesis... I'm totally not sorry. (Dear Green Man or Pan: for Winter Solstice all I want is telekinesis.)
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)
Okay, raise your hand if your wrists and or knees have had that stupid twisty stabby feeling when you bend or flex those specific joints.
You know, like when you walk down a flight of stairs and suddenly it's like someone stabs you in the knee with a piece of glass covered in electricity? And when you go to twist off a bottle cap and it's like someone stabs you through the wrist with a piece of g
lass covered in electricity? And then you start sobbing and screaming stuff like "Holy shit pain pain pain I need my pain drugs right the fuck now" or something similar?
Also, now both my wrists are extremely stiff and my right knee is burning. Anybody have anything like that?

Also, it was funny, because the other day, I was following Adam downstairs and my right knee went bugfuck stabby with burning and I shrieked "Oh my fucking gods ow ow ow" and Adam yelled "What happened?" and I yelled "Twisted my knee or whatever the fuck that is, you know what I mean! Drugs now drugs now holy shit drugs!" and he yelled "Yes, drugs, take your drugs now! I'll wait!" And so after the Ultram and the Soma, I hobbled downstairs and we made dinner together.


brightlotusmoon: (Default)

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