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!

http://internal-acceptance-movement.tumblr.com/post/61136577036

- 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}
-Joanna"


"Joanna,
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,
Jenny"

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.

http://brightlotusmoon.livejournal.com/1473230.html (the entry that started it all with my friend; aka "The Genesis Of The Spear Theory. Hi, Mandi!)
http://brightlotusmoon.livejournal.com/1520669.html
http://brightlotusmoon.livejournal.com/1571702.html
http://brightlotusmoon.livejournal.com/1565840.html
http://brightlotusmoon.livejournal.com/1565955.html
http://brightlotusmoon.livejournal.com/1555991.html

[Also, I had to save this somewhere...]
brightlotusmoon: (Snow White Blood Red Dragon Witch)
Oh, hey, my long lost theme song.

http://www.youtube.com/embed/Wmd60Kk9Ljk

Gracefully she's circling higher
She has the wind beneath her wings
And looks down on us, she said

Robbed of my innocence
Had no more time to play
I sure got my feathers burned
But I'm stronger than the flames

Here she comes, here she comes
I've been waiting for so long
Here she comes, rose again from the flames
My little phoenix

Eternity is set in her eyes
Throwing sparks back at the world
That'll never die and I think

She was robbed of her innocence
Had no more time to play
She's only a little girl
But she's stronger than the flames

Here she comes, here she comes
I've been waiting for so long
Here she comes, rose again from the flames
My little phoenix

Here she comes, I've been waiting
For my little phoenix

You've got to get close to the flame
To see what it's made of
You've got to get close to the flame
To see what you are made of

Here she comes, here she comes
I've been waiting for so long
Here she comes, rose again from the flames
My little phoenix

***

This reminds me, fascinatingly, of chronic pain, invisible illness, mental illness, disability, and the struggles of marginalization for a bodymind that is full of monsters.

http://www.youtube.com/embed/yxPMc-XWOZ8

Phantom voices with no words to follow
At the mercy of the cold and hollow
I withdrew into my sanctuary of silence
My defense

In this moment I am just becoming
Liberated from my cell of nothing
No sensation there was only breathing
Overcome oblivion

Falling Awake
From a walking sleep
And all that remains
Is the dying memory
And now I can dive for
These dreams I make
Like I am Falling
I am falling awake

Waves of melodies once forgotten
Like a symphony across the ocean
Never knew that they could hear my calling
Deep within
Crashing in
Rushing in
Like falling

Falling Awake
From a walking sleep
And all that remains
Is the dying memory
And now I can dive for
These dreams I make
Like I am Falling
I am falling awake

There is no returning to that emptiness,
Loneliness
The dream that lives inside of me
Won't fade away, it's wide awake

Falling Awake
From a walking sleep
And all that remains
Is the dying memory
And now I can dive for
These dreams I make
Like I am Falling
I am falling awake

***

And this one, same thing:

http://www.youtube.com/watch?v=vdG3ECUC-mE

Whenever I wake up
I'm lost and always afraid
It's never the same place
I close my eyes to escape
The walls around me

And I drift away
Inside the silence
Overtakes the Pain
In my dreams

I feel Immortal
I am not scared
No, I am not scared
I feel immortal
When I am there
When I am there

Whenever I wake up
The shards of us cut within
Always the same day
Frozen all in the fringe
I surrender to the sleep
And leave the hurt behind me
There's no death to fear
In my dreams

I feel Immortal
I am not scared
No, I am not scared
I feel immortal
When I am there
When I am there

So far or right beside me
So close but they can't find me
Slowly, time forgets me
I'm lonely, only dreaming

I feel Immortal
I am not scared
No, I am not scared
I feel immortal
When I am there
When I am there

***

And for my new friends in disability and invisible illness, I present my number one theme song.

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

Smash glass against the wall
Curse the music on the radio that the neighbours play.
Door slams, she turns her head
Watches through the window as he pulls away
Funny how your racing brain drives you so mad
When all the while you feel so numb
Too old to be clean far too young to be broken
Like an army we come

Cut back, left behind
I watched you self-destructing oh so many times
Shot down, once again
Sitting in a chair crying what am I going to do with my life?
Just learn to hide the way that you really feel
Never let them know that you're scared
But understand that you're not the special only one
Watch us now, watch us real close

How we all dance with this fire 'cause it's all that we know
And as the spotlight turns toward us, we all try our best to show
We are lost we are freaks, we are crippled, we are weak
We are the heirs, we are the true heirs, to all the world

Let's go build a fire down on the empty beach when the waves are crashing high
White heat purify, as the sparks fly up into the great black sky
Sacrifice these crutches to the crackling flames
Stand as silhouettes against the dawn
It's far too late to try to sleep now, seems I'm never tired any more

I want to dance with this fire 'cause it's all that I know
We are lost we are freaks
And we try our best to show
I am lost
I'm a freak ha ha.

***

Depression Monster is still wrapped around me, steel claws and silver grin, but I am fighting and fighting, and I have many spears.

Husband returned from New Orleans around one-thirty this morning. Rose and Jupiter immediately climbed on him and we all fell asleep in a snuggling pile.
Later today, errands! Petco Unleashed with coupons for Blue food and litter. Trader Joe's for cookies, whole milk yogurt, chocolate hemp powder, trail mix, pumpkin cereal bars, fairytale pumpkins. Dollar Store for calendars. H-Mart for produce and foods from outside North America.
Had a lovely chat near the with from a guy who was from Jamaica, who extolled the virtues of awesome iron-rich burro bananas and said that his grandmother, who ate them every day on The Island, was 130. She probably did lots of things. The man himself looked barely 40 but he could have been 50. I asked him which bunches of burro bananas looked best. Yay, snacks.
And we got a pure honey nut spread, roasted seaweed snack packs, tamarind paste, demerara sugar (4 lbs for under 5 bucks), black plums, pomegranates, red leaf lettuce, and stuff I forget now.
I have taken more medication to ease this pain, I have meditated with cartoon comedy to beat back the Depression Monster, and I now will get back to writing.
brightlotusmoon: (Fae Dragon Alien)
Dear everyone:
I'm in the middle of okay and not okay. Just so you know. No need to worry, but since I am still in the post ictal state (after seizure), I may type randomly weird things that are randomly weirder than usual.

And now, random things that are random!

***
You know what is awesome? Brand new boots that generally cost over one hundred dollars, bought for a whopping twenty dollars each with coupons. Mainly because the Ariat Fat Baby Copper Gator Print boots are no longer being made. The Ariat Fatbaby Cognac Ostrich Print boots are insanely cheap, too. Yay, Ariat. Yay, sales and coupons!


Ariat Fatbaby Cognac Ostrich Print

***
So, I use this as toothpaste. I mean, obviously it is a shampoo and a skin cleanser, but it makes a good toothpaste as well. I embrace my weirdness quite happily.
http://livesuperfoods.com/morrocco-method-sea-essence-shampoo.html
Also, this makes an awesome tooth cleanser and face toner.
https://www.swansonvitamins.com/natures-answer-periowash-16-fl-oz-liquid

***
Aww, look, it's my wedding ring which began as my promise ring, minus the snake details!
Technically, this.
http://www.amazon.com/Triquetra-Trinity-Eternity-Sterling-Silver/dp/B00303IH3G/


***
Stupid sore throat. Stupid fibromyalgia attack. Stupid depression attack. Stupid anxiety attack. Stupid after seizure effects. Stupid me. Also I am feeling insanely insecure, and I know I have gained muscle and tone but I still want to slice out any excess fat with daggers. Such is society's cultural pressure on women and also anorexia scars and anorexia worms that push me into wanting to emaciate myself which would be a horrid hideous thing. I am a fighter. Fuck all of that. I am at war with so many things right now, and the scars are just part of it. I don't even know why I'm talking about that, it's so private. Oh well. Pain is pain. I am in pain. I am anxious and depressed and bleeding inside and I am exhausted and I am still fighting.
I shall raise my spears and scream until I am sore. Again.
I shall meditate while grasping my heart love duck figurine. Maybe I will feel better.


Migraine is still pounding. Off to shower and bed with pills now...
brightlotusmoon: (Pixie Model 2)
chakradragon


I know Pantheism and Polytheism often conflict, but I am a proud pantheistic polytheistic polyagnostic eclectic moonlight witch.
(Also, a Peaceful Dragon Mediterranean Princess Warrior, which is neither here nor there.)

And I am very fluid in my faith and philosophy, which means I enjoy discussing faith in general, so long as I am not proselytized at.
 
(It's funny. As soon as I mention that I am ethnically Jewish and spiritually Pagan, the proselytizing ends with nary a complaint. I am ethnically Jewish with a heritage of Sicilian, Greek, Russian, Romanian, Hungarian. And I am proud. But not so proud that I announce it every time something involving one of those ethnicity comes up.
I know people like that. Especially if they are, say 1/16 said ethnicity. Yes, dears. It's lovely that you have such rich heritage with a few drops of that ethnic blood; now please stop telling me how wonderful you are because of it.)

Finding this image was amazing. I had a dream about it in early 2012, and I don't even remember how I found the image online. Ah, Higher Brain and Subconscious, and Quantum Psychic Consciousness, I love it when you work together.

This image is ideal: I like dragons. And lotus flowers. And the moon. And the cosmos. And transcendental meditation. And magic. And the concept that all consciousness is connected, with no need to use religion to connect to the cosmic parts.

We are all made of the universe."We are the universe trying to understand itself" like Carl Sagan said.

And as Delenn from Babylon 5 says:
"The molecules of your body are the same molecules that make this station and the nebula outside, that burn inside the stars themselves. We are star-stuff. We are the Universe, made manifest, trying to figure itself out. And, as we have both learned, sometimes the Universe needs a change of perspective."
-Delenn, 'A Distant Star' episode of 'Babylon 5'
brightlotusmoon: (Pixie Model 3)
I have a spear, a sword, and a hammer. Anything or anyone planning to fuck with me shall be met with brutal and stabby force.

Seriously, though. I know I am severely depressed and anxious and in so much pain and so exhausted by it all. And various support systems are trying to nudge me toward issues that bother them, which I would love to deal with later, just not now, or tomorrow, or next week. In conclusion: I don't care.

And so, until this heavy darkness lifts entirely, I will keep doing what I have been doing for my health. And everyone who keeps repeating all those treatments over and over will be met with the classic "Yes" answer. "Yes, I know. Yes, I am working on it. Yes, I am doing that. Yes, I will do that. Yes, I will see if that helps. Yes, I am hearing you. Yes, I understand you. Yes, we are beating a dead horse. Yes, I am doing everything I possibly can to heal and get better even though it takes time. Yes, my life is not your life. Yes, I know you care for me. Yes, I am taking care of myself. Yes, I know you don't believe me. Yes, I am being completely honest because like I said, these things take time. Yes. Yes. Yes. Yes. Okay. Good. We will talk later. Yes. Okay. Later."

For me, there is a difference between "I want to help you, even if I can only stand with you and hold your hand either physically or mentally" and "I want to help you, so here is everything you need to do, because I want you to do all these things so I feel better so I can stop worrying about you."

In other news, I painted my nails earlier with Sally Hansen Nailgrowth Miracle Nail Polish in Loyal Lavender. A pearlescent shiny pastel pink lavender, essentially English Lavender with soft purple iridescence. It seems to go well with my coloring.
http://api.photoshop.com/v1.0/accounts/48ff298f257a429894632ebafd1844ad/assets/ce6d2ec1cd6a49cbb133116455b3f08f
https://s3.amazonaws.com/luuux-original-files/bookmarklet_uploaded/sallyHansen.jpg
Also, it makes me instantly smile when I look at my fingernails, because the color brightens everything. I need to be brightened anyway.

Later, I switched to a different polish. I've been feeling so creepily Dragon-ish today that I applied Revlon Top Speed Fast Dry Nail Enamel in Ocean, a deep teal with green foil iridescence. It looks like dragon scales. It makes me happy and also fierce as fuck. Plus, the Top Speed products are healthy for nails. Keratin, Silk, Silica, Minerals, Gem Powders.
http://3.bp.blogspot.com/-kKkz_H_NR_M/T19yySc9ZeI/AAAAAAAAEVA/1vBEW8dBW44/s1600/003-1.JPG
http://4.bp.blogspot.com/-oHMe06Levu8/TWZ88KHEzMI/AAAAAAAACX0/eN6O4AxYSVg/s1600/RevlonOcean.jpg
http://2.bp.blogspot.com/-MzVUHpoEOHU/TlZ1aU7lTsI/AAAAAAAABsI/WlOs4dumX9M/s1600/008.JPG

When it comes to concealing my facial skin - like full war paint - I always choose full coverage: Lauren Brooke Creme Foundation and Creme Concealer, It Cosmetics Concealer, MAC Studio Sculpt Foundation, Physician's Formula Conceal Rx and Circle Rx, Urban Decay Naked Skin Foundation, NYX HD Studio Foundation, Korres Quercetin Concealer, Revlon DNA Advantage Foundation, CoverGirl Tone Rehab Foundation, CoverBlend Concealer, Too Faced Flawless Concealer.

On my warrior lips I alternate between four triumphant red lipsticks: Nars Semi-Matte in Fire Down Below, a deep true blood red; Being True Pure LipColor in Temptress, a dark deep bloody red; Too Faced Lip Creme in Stiletto Red, a deep neutral blood red; Revlon Lip Butter in Red Velvet, a silky rich blood red. Bloody, exotic, attractive, intense, powerful, sensual. I always love things in fours. No matter which color I wear, I instantly feel like a great warrior goddess, even if it is only in my mind.
http://www.narscosmetics.com/color/lips/lipstick/semi-matte-lipstick/fire-down-below
http://www.dermstore.com/product.php?prod_id=24194
http://www.dermstore.com/product.php?prod_id=42764
http://nouveaucheap.blogspot.com/2011/10/review-revlon-colorburst-lip-butter-in.html
My staple red is It Cosmetics Vitality Lip Flush in Pretty Woman, but as it is sheer and flushed, I use it every day no matter how I feel.
http://www.beauty.com/it-cosmetics-vitality-lip-flush-4-in-1-natural-anti-aging-lipstick-stain-pretty-woman/qxp387445?catid=12884

A brightened face, a wide mouth stained with psychic blood, a scream ripped from a chronically ill body, and I refuse to back down.
*warrior yell*
*spears raised*
brightlotusmoon: (Pixie Model 3)
I know I often take criticism personally and seriously. But nowadays, whenever someone scolds me for things I do due to OCD and ADD and my own screwy brain, I fully believe without question that everything is my fault. I am worthless, useless, insane, a candidate for legitimate institutionalizing. Maybe I am. Maybe I am so dark and wrong and damaged that I damage everything I touch. It is a very depressing thought. But right now I am a very depressed woman.

This usually happens when someone beats a dead horse by reminding me over and over about a few things I have done that seem stupid or pointless or reckless. I know this. I'm aware of this. Why the fuck do they think I'm on multiple medications and getting help for my Crazy? Fuck. Enough, people, please. Stop. I'm too tired for this and you are really truly not making my recovery better.
I'll be calling my neurologist about increasing my pill count for the 1 mg of Klonopin, which would really help.

In other news, Adam had his CT Scan, and we will learn the results in a few days. Also, breakfast was at Panera bread, with souffles and an iced mocha for me; Adam asked for an iced chai, but they put espresso in by mistake, so they remade his drink and let me keep the chai espresso, which was fantastic, because I love the taste.

Now we are hanging out at home for the rest of the day, mostly so Adam can clear his system of the barium drinks.

Also, my cats are preciously adorable in every way. Also, Luna saved our lives last night by jumping on the bed, nudging me, and meowing. It turns out that Adam had left one of the stove burners on Low instead of Off, since he cannot smell gas. I did smell gas. I ran down stairs and fixed it, then cracked open a window. From now on, I really need to remind him to make sure every burner is Off. Oy.

Also... I do feel better now that the morning Klonopin has kicked in well. But that dark thought is still trying to snake its way through my head. I am prepared to battle.

Also:
It is times like this when I want to crawl deep inside my own mind and find the part of me that is huddled in a dark corner, consumed by panic, shivering and sobbing, banging her head against my rocky mental walls, and then take her in my arms, wrapping my body around hers, whispering favorite songs, pouring every ounce of love, strength, hope, beauty, confidence, and power into her until I am drained and fatigued. It is times like these when I feel too fragile to be touched, where the tactile allodynia symptom of fibromyalgia is roaring alongside the hypersensitivity and the sensory processing disorder. But it is times like this when I want someone to just sit with me, let me curl up against them so they can put an arm around me and also hold my hand, so we can tell funny stories and watch silly cartoons and comedy films in comfort, with purring cats nuzzling us. There are so many ways to give and receive comfort, and often I find that words online of love and understanding and compassion are almost as wonderful as physical face to face comfort, because when I am online I don't have to show my sobbing or my fear or my panic.
You know what I mean.
brightlotusmoon: (Pixie Model 5)


When there is darkness in front of me, there is light at my back, even if I cannot see it. If the darkness surrounds me and melts into me, so does the light, even if I cannot feel it. I always try to find my light, even if I have no idea where to start.

I have been so psychically tired. So fatigued. So exhausted. Today I got a wonderful day-long energy boost from supplements like yerba mate and green coffee extract, containing small amounts of caffeine that were smooth enough to help me without side effects. However, the fatigue and exhaustion were very mental and emotional. Depression is horrid. This will end, with help and remedy and treatment. But it is still horrid, and it will return, and even though I will always stand guard and fight, I get more and more beaten down.

Replenishing myself can be fun, exciting, fascinating, and weird in all manner of ways, since I love all sorts of reclusive nerd and geek activities, certain books and songs and films and and television series that entertain me over and over without boredom or annoyance. I can watch every episode of "Futurama" and "My Little Pony Friendship Is Magic" and "Babylon 5" and "Buffy The Vampire Slayer" and most of "Star Trek Deep Space Nine" and "Firefly", read every Seanan McGuire book, listen to certain songs, watch movies like "Boondock Saints" and "The Princess Bride" and "Serenity" over and over and over until words are cemented into my mind and I am babbling character quotes everywhere.

I am so very relieved for the pharmaceutical pills and supplement pills that I can take every day, plus exercises and meditative techniques that really do help me despite what people think.
I am constantly astounded every time someone says, "Wow, are you still having problems? I thought that treatment was supposed to help already! Why isn't that pill working yet?" Etc. Oh, lovelies. No, those treatments and pills have been working and helping. You just haven't seen how. You can't see inside me. The treatments just aren't working the way you think they should, that's all. They work slowly, they sometimes fail because nothing is perfect, and quite often they need to reroute around my severely damaged brain processing, which desperately needs a special reboot. Maybe hypotherapy, something non-drug to really rewire and reconnect that dying and the dead inside my neurology.
And so my fighting continues, and I wash the psychic blood off so often that I am either raw or glowing.
It echoes my outside a little, the way I care for my skin, the way I wear careful cosmetics. How my distorted body image penetrates so deep that I cannot look at myself to see what others see. But I am trying, my lovelies. I really am. I am always doing my best.

Today, I applied a nail polish called Sally Hansen Nailgrowth Miracle Nail Polish in Divine Wine. Love it. Divine Wine is a dark, dark wine red, more red than wine. Ruby or crimson or pomegranate red. Very shiny, fairly shimmery. Plus, the varnish itself actually contains nail-strengthening ingredients, like biotin and keratin and peptides and chondroitin, so it could essentially help nails grow stronger and quicker, which is awesome. This pleases me.
My fingers look bloody and gorgeous. The color reminds me very much of a darker version of Sally Hansen MoistureTwist Lip Gloss in Cherry Twist. Or maybe It Cosmetics Vitality Lip Flush in Pretty Woman, which is a very deep, dark bloody cherry brownish berry red, which I am wearing in most of my profile photos.
A nice bing cherry red with slight gold shimmer. Dark red like cherries or pomegranates or movie blood or maybe really dark red wine, not purple but maybe with brown and pink undertones.
The varnish got all over my cuticles and I look like a baby vampire who got too excited with a first feed. There are streaks of colors on my left palm and thumb and index finger ad my right pinky finger, and it's sort of deep pinkish red with tiny sparkles.
I cannot stop staring at my fingers. So shimmery. So red. I want to drink pomegranate juice mixed with wine. I want to cover myself with healing energy, defensive energy, all the power I can find, the colors of the elements and blood and the sky and magic and the universe itself.

And so, I am a warrior princess pixie dragon girl who will always be around when someone needs help or advice. I will always lend a hand, a shoulder, a spear, a sword, a shield, a flame, a cane, a crutch, a pair of wings. I will never stop. It is what I do. It is what I am.



brightlotusmoon: (Pixie Model 5)
Well, then.
Spears raised to the sky, screaming hard enough for the gods to hear my battle cry.
Covered in blood and dark and pain and scars and insanity. Teeth and talons bared, skin flayed just enough to show how I can still stand and fight. Do not back down. Stand up until my body collapses on its own. Find a safe place to heal and rest. Gear up again and rush out again. Over and over, on and on, for the rest of my life, this will never end. Spears and swords and armor and power and intensity.
I am not strong. I just want to live.
This is not about bravery or inspiration. This is not about using my disabilities to show or prove anything to anyone.
This is about my life. This about my battles. This is about my fellow warriors, who I will support until I fall, and if I fall I will crawl to throw the final spear.
I just want to live. I don't care what is normal or crazy. I just want myself back. It will take the rest of this life and beyond, but I am prepared.
My monsters will always be there to damage me. I will always be there to damage my monsters. Welcome to life.
I will stand. I will fight. I will hurt. I will heal. I will crawl. I will return. I will fight on and on because it is all I am. I will fight.
I will stand up.


http://www.youtube.com/watch?v=GWqmRGnqYpw
brightlotusmoon: (Snow White Blood Red Dragon Witch)
Today is a day of deep, deep depression, fatigue, and chronic pain so endless that the abyss is right in my face grinning. Everything is a Cheshire cat.

I have been forming this post in my head since yesterday morning, when I woke up with nothing working properly, with only bits of my brain and body truly functional, and I had to put on a mask and a whole costume, I had to grip my spears and even a sword for dear life, I had to smile and pretend to shine because I refused to worry anyone, because I didn't want to sink further.

And people tend to get tired of me constantly talking about my pains and feelings, because whoa, can't I talk about happy things, things that maybe don't involve medicine and coping mechanisms and feelings?
But here is the Big Thing: So many people feel this way. So many dear friends will read this and understand and perhaps comment and know they have someone to help them stand and fight.
And that is the other Big Thing. We do need help. We do need to stand with each other and fight. On the internet and in life, there are people who will say we are faking, that we are pill addicts, that we are attention whores, that we are crazy.

I will stand up and say, No, I am not faking, nor a pill addict, nor do I desire attention. But crazy? Yes. Yes, I am crazy. Yes, I need help. I am getting help. Medications. Therapy. Exercise. Nutrition. Supplements. Herbs. Vitamins. Holistics. I am not afraid to tell you what is happening, because you need to hear it, you who would mock and tease and bully and tell me to "Just slap a Band-Aid on it and walk it off, just exercise and feel better, just eat this food for two weeks without any drugs, just smile a lot, oh hey, I felt sad yesterday and then I got over it, I know how you feel, I wrenched my ankle last week and wrapped it up and now I feel better, I know how you feel, maybe you're just pretending, why don't you just get better? Quit talking about how much you hurt, everybody hurts, it could be worse."
It could be worse, yes oh yes. Ohhh, sweethearts, it could be so much worse. Yes.
Here, let us try something: You can have my body for a while. You can feel every single feeling I feel, think every thought I think, know every pain I know. See how it feels. No? You can't? Really? Are you sure? Still no? Oh, dear. Well, then, I suppose we will have to stop associating, even if we have only been talking via a forum, a community, a social network, a bus stop, a party, via phone, via web video, in a store, in a house. Oh, well. I thought maybe you had enough compassion, or, you know, empathy. I guess I won't find out. But you know what? If it ever happens to you - and part of me hopes it won't and part of me hopes it will - I shall still stand with you even if you hurt me, because warriors stand up.

There are beautiful, wonderful, incredible, amazing, extraordinary, fantastic people who are being slowly devastated, crippled, destroyed by their own bodies' various systems, for no true reason other than they just happen to live in those bodies. Some of them think about how horrible they are, how they are useless, worthless, pointless, draining, a burden to everyone around them. I feel that way quite a bit. There are some who want to harm themselves, some who want to kill themselves. I cannot do that, but I admit I have imagined it. If I truly wanted to harm myself, I would stop taking my medications. I would let all the pain crash over me in one single tsunami with wave after wave, while I spasm and shake and seize and sob and scream and shiver because I refuse to give myself relief, because I refuse to make it stop. But I will not do that. I can not do that. It would destroy everyone who loves me, whom I love. And I know that. That is another Big Thing.

To everyone reading this who feels the same way: I love you. You are loved. You will always be loved. You are extraordinary. You are amazing. You are fantastic. You are beautiful in so many ways. I love you. I will stand up with you. I will give you spears, swords, shields. I will show you how to scream a battle cry loud enough to make the gods hear you. I will show you how to launch into battle with these monsters. We will never win the war. We will often retreat covered in blood and darkness, growling and licking our wounds and crouching together to patch up each other's wounds.
I will take you by the hand and lead you outside. We will stare up at the sky and say, "Oh, this is such a beautiful sky." The sky may not look beautiful. The sky may be full of dark storm clouds and we cannot see the sun. But just because there is a storm does not mean that the sky has gone away. The clouds and the dark will move, and we will see the bright, bright sky, all shades of blue, and we will see the sun, gazing upon us like the eye of a god, giving us light and warmth and strength. We cannot look directly at the sun, but we can look at the sky and call it beautiful, and we can look at each other, covered in war wounds, and say we are beautiful. We are. We are beautiful.
I love you.





















Oh, and I wanted to add: I took my painkillers and anti-anxiety drugs today, of course. They are helping, of course. I got exercise, I meditated deeply, I spoke with a therapist, I ate healthful happy foods, I did all the things people suggest one does in these situations. I am very very slowly working my way back to a steady and stable mood, but it will take a while - many people don't understand that it takes a while. That is yet another Big Thing. "Why isn't your treatment working yet? What is wrong with you? Shouldn't you be feeling better by now? Why are you still like this?"
It is tiring, and it is irritating. But I am still going to share, and speak, and stand, and stay strong. Because you asked. Because you need to know. Because I love you.
brightlotusmoon: (Pixie Model 1)
Well, hello, new migraine. And other stupid pain things. Good thing I have nowhere to go today. I can at least try to organize my clothes. Charlotte will be coming over to help.

Jupiter is pawing and poking at me for cuddles, which I gave him, and it was profoundly adorable, the way I had one arm around him while he leaned into my torso against my sweater and purred. He's still hanging out, front paws on my leg, moving around to get comfortable next to me.

Also, last night's Doctor Who finale had me actually sobbing and grabbing Adam's hands and telling him how much I loved him. I mean, I know lots of fans started getting super annoyed at Amy and Rory, sometimes hateful, but not me, I always loved them. And oh, what a way to say goodbye.

HOLY FUCK, PAIN. This is such bullshit. My spears are all tarnished and bloody, because the pain monsters have come close enough for me to stab. So I still have many spears, but I am still weak, and it sucks, and I want to lie down and sleep, but I can't, because Things To Do.

"It's creepy here!"
"This is the worst part. The calm before the battle."
"And then the battle's not so bad?"
"Oh, right. I forgot about the battle. *whimper*"
-Fry and an Army soldier, from Futurama, 'War Is The H-Word'

At least I can look at my pretty turquoise green fingernails and distract myself with shiny.

I don't care what they say. Strong not-red nail colors are awesome.
When I was with my parents I mentioned that I had bought Revlon's Nail Enamel in Ocean, a metallic teal green. And my mother, the artist and former fashion illustrator who attended FIT in the 1960, made a disgusted face and said that nobody should wear colors like that, only reds and browns and such. Well, hah hah, I'm wearing Ocean right now. And I love it. And I also bought more Revlon colors, like Rainforest (glittery deep forest green) and Decadent (metallic blue purple) and Mysterious (shiny royal blue), which are all lovely.

So far, I like Revlon's nail enamel products if I can't get natural or organic nail products. I've been dismissing the very low reviews on certain websites that claim instant chipping of enamel and brittle yellowing of nails, because I have really strong nails thanks to biotin and bamboo silica and topical serums containing oils like argan and tamanu and neem. I'm not sure what those people have been doing. Ooh, my nails are SHINY.
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)
Point 1. That extremely severe fibromyalgia flare is still raging. I am losing my ability to rage harder. My spears are almost gone.
Point 2. Now there is a mild sciatica flare. I would not wish a severe sciatica flare on anyone ever, no exception.
Point 3. I still can't sleep yet.
Point 4. Those doses of Flexeril and Soma are finally working, and I may take a Codeine Tylenol pill if needed, because now the muscles in my neck are tight.
Point 5. OH MY GODS MUSCLES, STOP SPASMING AGAIN. I HATE YOU.

*tantrum*
*spears everywhere*
*insane warrior scream*
*unbreakable diamond filament tether string of nasty curses*

Sleep will happen if I have to fucking force it. Valerian, Passionflower, and Chamomile should do it. Thank the gods everywhere that I am on disability and my main job is writing fiction.

I suppose getting enraged and violent at my chronic pain is better than crying when I know crying won't help, except when it is enraged crying. Seriously, I am about to cry angry tears of rage. Worst pain flare in fucking years. I will take as much medicine as I am allowed to make this go away, I will call my specialists and make sure they know, I will do whatever exercises and meditative things and magics I must do, I just want it to STOP. NOW.
It will never end. It can't. It is chronic. But the flare-ups end eventually. I want eventually to be now. It has been days. I can't give up, but at least I can throw my spears while lying down exhausted...

The Spear Theory
brightlotusmoon: (Default)
*teeth grind*
I try to be okay. I always try.
This time I just cannot make the thoughts leave. I've mentally tried screaming, pleading, cajoling, forcing, threatening, crying. They don't fucking care. They get louder and louder and they laugh and troll and tell me what a terrible human I am and how nothing I do will ever matter because in the end I will always screw things up, even though I have an actual excuse that includes various disabilities. The depression doesn't care. The depression insists that everything is my fault and always will be, and smacks me in the face with the trolling insistence that nobody loves me for who I am, only for what I can give them.
Internet trolls have absolutely nothing on clinical major depression.

I hate it.

Fuck depression.

I will now do everything I possibly can to fight, fight hard, but I am weak and losing spears and I just want to sleep for days and not care. But I have animals to care for and promises to keep and a life to live and loves to love. So fuck you, depression trolls. You cannot take me. Get the fuck out.

Joanna The Sicilian Greek Russian Romanian Hungarian Warrior Princess commands it.

I hope it works. Please let it work. Dear Cosmic Interdimensional Entities in this Universe and other Universes, if you can hear me, give me some sort of strength, because I am thisclose to falling down.

Thank you, New Model Army. Thank you, Justin Sullivan.
http://www.youtube.com/watch?v=oV8af21GusA (The Charge
http://www.youtube.com/watch?v=eyr8aiGUlzc (Vagabonds)
http://www.youtube.com/watch?v=XPIPTR3Z5Vc (Wonderful Way To Go)
http://www.youtube.com/watch?v=W4xg9NwCg80 (Rivers plus Orange Tree Roads)
http://www.youtube.com/watch?v=rcLdXSkm5uE (Ballad Of Bodmin Pil)
brightlotusmoon: (Default)
Well, hello, migraine and swollen wrist and swollen knee and electric fire pain in every muscle. I am totally going to stab you with pills and remedies.

Luna apparently wants to help, because is on my lap and she keeps licking my face and purring excessively. How often have you had a cat stick its nose up your nostril?

I feel essentially empty and cold, and my smiles are superficial and there is no laughter. I don't feel; I observe emotions. Sometimes depression with anxiety will do that.

I may have PMS, but that excuses nothing. I will continue to entertain myself, and at some point, something will break through and I will laugh and feel and become a shining, shimmering dancing pixie. But not right now.

Soon enough. This is why I have a Facebook, and these friends who know.
brightlotusmoon: (Default)
Copied from Facebook:

Ooh, Ooh, the migraine is gone. I won. Boadicea, Baby! Now for a shower and the comfiest pajamas I own.

I think I'll sleep well, which is relieving, since Adam's dentist appointment is at eleven, and mine will probably follow quickly since it's just a cleaning. I still can't believe there has never been any problems with my teeth.

I still have so many books to read. It is dizzying. And thanks to ADD and OCD, I'm having trouble keeping track and I get whiny if Adam suggests moving the books.

Also, tonight's Futurama was strange, but fascinating and awesome in its own bizarre way. I don't think we've had an episode centering around Amy and Zoidberg like this.

Oh, and I must quote one of my best friends who commented on my Facebook post begging people to make me laugh. She intensely insisted that I treat my pain right.

"Suffering doesn't make you stronger, baby. And suffering never crowned a queen."

She expressed that so beautifully that I want to print it and put it on a wall.

This was after she typed "YOU. ONE CODINE. ONE SOMA. BED." I love her.

I think she read my mind. I took a codeine an hour ago and I'm gonna take a Soma after my shower. She is right. Suffering is bull. Fuck suffering, I have drugs and supplements and massage exercises. (I mean, for me, myself; I cannot speak for those who are unable to take pain drugs or good treatments without suffering further due to ill effects. But for myself? Fuck yeah drugs.) Also, she has a PhD in biology, and went through medical school and I trust her, and besides, she was the one who suggested Ultram, and also I have loved her as a sister for a decade unconditionally.

Yes, shower now. Then comfortable pajamas. Then bed. Then I wish for wonderful dreams.
brightlotusmoon: (Default)
bodicea

This is Boadicea. Among many many other things, she has now become the Matron Warrior Saint of Disability and Chronic Illness for me and many of my dear friends. Physical, mental, both, visible, invisible, both, every kind. Our rallying cry is "Boadicea, Baby!"
What started out as something of an inside joke (The Spear Theory is the Boadicea Method of dealing with Chronic Illness) has now become a very important way of supporting each other.



http://www.youtube.com/watch?v=IH2147R_vJ0
brightlotusmoon: (Default)
Well, hello, Pain Level 7. You want me to lie down and cry, don't you? I will think about it.

And, wonderfully, I still have a good pile of Spears left. I can probably move my bedtime to midnight and use some of those Spears to lightly exercise, or write, or read. The Pain Monsters of sleep are coming close enough to attack with Spears anyway.
(The origin of my alternative to The Spoon Theory: http://brightrosefox.livejournal.com/1520669.html)
Spoons say, "I have only THIS MUCH reservoir energy and strength for this one day, and once it is gone that is it! Poor me, I'm too weak to make it to tomorrow."
Spears and weapons say, "Okay, motherfuckers, I'm going to take the day as much as I can, I am going to run and attack and defend until I'm drained and exhausted, and then I'm going to crawl, and then I'm going to ask someone to carry me, and when I am finally done, then I will collapse willingly. CHARGE."
It's the Boadicea method of dealing with illness. Probably why Enya's "Boadicea" is a favorite song of mine.

I need to return to the Container Store for more little pill containers. I've got one in my purse with meclizine, clonazepam, tramadol, chlorpheniramine, and bismuth subsalicylate, for Those Moments while traveling. Plus a tiny water bottle, although the tablets are easy to dry swallow. But more tiny containers are always good, and it satisfies the OCD for a while.
Organizing must happen. Sure, my bedroom and TV room are a mess, but it's an organized mess. I know where everything is in my mess. Those supplement bottles are on that specific dresser for a reason! Because! Reason! No, I will not shift them around, they're fine where they are!

So, I made plans to take the bus, or possibly walk the ten minutes, to Wendy's for a Son Of Baconator burger. And then walk back or bus if the weather is decent. Is it sad or weird or good that I think it would be a triumph?

"The cybernetic oracle. The ultimate man-machine hybrid. Programmed with every crime ever recorded and implanted with the brain cells of history's greatest detectives. We call him... Pickles."
"On account of it's like he's floating in a jar?"
"Exactly."

Dear Futurama: Please continue to make me laugh no matter what. I will even forgive you for the episode 'Attack Of The Killer App' if you continue to make me love you.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch)
When I woke up, I had more energy than usual, so I put it to use. I went for a walk, I read fiction voraciously, I wrote stories like a brain on fire.

I did stuff with the energy I had. Now I am drained. Damn it. I don't use the spoon analogy anymore. I use spears. I have only so many spears to aim and throw at all my syndromes and disabilities, and I am about to run out. Also most of the spears need polishing.

See, it is easier for me to think of weapons with which to battle or pacify my medical conditions. Spears work more visually in my mind. The spoon theory is a lovely analogy, but it never really worked for my brain. I am used to moving through my disabilities with a stabby stabby process, and I find that aiming and hurling stick-like objects helps me focus emotionally, and also spears make good walking sticks. So, I have the Spear Theory. I have a certain amount of spears that I wake up with every day, give or take a couple of handfuls. The more spears I start with, the better I feel and the more energy I have. Every time a symptom strikes, I take aim with one spear, even two or more. The more spears I hurl, the fewer I have left, and the closer the Syndrome Monsters come toward me. As the Syndrome Monsters get closer, I get weaker, and any leftover spears turn into melee edged weapons instead of melee ranged weapons. But by the time I charge into battle, my body is struggling, and I can only do so much. Even if I have just one spear left, I am going to make it count, as I fly into a bloody rage with all the meager strength I have left. Just one more step, and then I can fall over. Just one more spear.

Spoons say, "I have only THIS MUCH reservoir energy and strength for this one day, and once it is gone that is it! Poor me, I'm too weak to make it to tomorrow."
Spears and weapons say, "Okay, motherfuckers, I'm going to take the day as much as I can, I am going to run and attack and defend until I'm drained and exhausted, and then I'm going to crawl, and then I'm going to ask someone to carry me, and when I am finally done, then I will collapse willingly. CHARGE."
It's the Boadicea method of dealing with illness. Probably why Enya's "Boadicea" is a favorite song of mine.

I've got a few left. I'm going to use those spears wisely, even if it has to be close combat. Go me, go me, go go go...

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