brightlotusmoon: (Asha)

Good things.
The personal therapy protocol is juuust starting to work. Slowly and softly. The doctors said slipping off is natural. But my slips are fewer. I think the new drug is working much faster than expected. No terrible side effects after all between dry mouth and that tingly sensation that the world is shiny shiny shiny. But I can already feel those most compulsive thoughts starting to be quiet.

Now, if I could just not be badgered by acquaintances who want me to be better now now now. Yes, this has had me in its psychiatric grip for over four years. It takes tiiime to get the ideal treatment. Yaaaaugh, leave me alone. You don't know. You are not inside my neurology.
Repeat. Rinse.
Those of you who get it, you get it.

So much meditation. It is in my dreams. I am ready to work myself through and beyond. Shut up about it taking all these years. Damaged braining is hard.

I make it hard for people to love me well enough to help. Which is why I need to do this on my own.

/venting ranty ramble

brightlotusmoon: (Asha)
So, my thoughts have been spinning merrily amidst what could be a spiraling episode of... Oh, fuck, probably everything at once. After I had a chat with three doctors about the consequences of stress-related memory loss, I quietly decided to start a private mindfulness therapy, which I have only been sharing with the psychologist, for advice, while I move forward in my own brain to stop my own brain from destroying my mindstate.

Tomorrow, I see my general physician and have her write a referral for the local hyperbaric oxygen therapy center. Although it's a bit premature, as they have yet to call me back about an initial consultation. While I was filling out their online New Patient form, I started wondering if they would even take someone like me, with two dozen illness. Even though cerebral palsy is the cornerstone. I just feel so excited about it. That's a good thing. I can still most of my emotion things.

What I find beautiful and fascinating about my private therapy protocol is that almost nobody believes me. I have been stuck in something insane since 2010. Why would they believe I would "get better" now, so many years later after therapy and medications and meditative exercises? Then again, none of them have been in long term therapy or medication. It really does take many years to spur a change this massive. Hence the secret protocol, which includes a possible medication update and potential oxygen therapy.

I don't expect anyone to believe me. I don't expect anyone to believe in my desire to change with this therapy protocol. How could they? Why would they? I am the same as I was when symptoms started. But I don't want their belief. I don't really want support if there is no actual active knowledge. How can you say "Hey, I've been there, I get it, fist bump in solidarity" unless you really have gone through a similar structure of treatment repeatedly for a grab bag of illnesses that mindfuck you for no reason?
Actual legitimate question, BTW.
If you're also a parent of someone with interconnected psychiatric and neurological disorders, I would love input, because when I try to explain these things to my mom who only has hereditary ADHD controlled via lifestyle, my emotion-brain starts shutting down so my technical-brain can word at her, and I know she wants less science and more human. I'm trying. I just cannot get past that very protective mental guardian who shields emotion-Joanna from Outside. And oh, as much as I love Serena, she feels it is easier and gentler to let me sleep while she and Koan the calico kitten organize and compartmentalize all the Me. Ananta works hard enough balancing out all the neuroweird that Alicia in my private epileptic Wonderland can't reach. I haven't had much success in psychically merging with Asha. We are working out my dissociative and depersonalization episodes first.

I will do this. It will happen. Steps have been severely taken. Hard to talk. But if you think you get it, I would love a discussion via Private Message. I am willing to reveal bits and pieces of my Rebuild Joanna Brain Project to acquire tips and advice from those who get it.

Now, see, I view many people as family beyond my blood family - who shall remain the besy family I would want. Various people in my social circle - friends plus family - have always stood with me. I will always need and want that. But for those who are truly normal and looking at me with confusion, puzzlement, exasperation, fear, anger... and the type of condesencing that means pats on the head, chuckling, and "I love you sweetie. Of course you'll change." "You do nothing. You never help. You are too self absorbed, you don't think, you claim memory loss. It is all right, dear. We are used to hit. Just finish writing." Followed by another hair tousle. I'm used to it. It's routine because I am me.
I am not out to prove them wrong, not entirely. I am out to prove to myself that my neuroplasticity really might eradicate the worst of the annoying symptoms.
Maybe this whole autistic ramble came from my hope and excitement over this slow gentle therapeutic process. If loved ones want me to speed it up, I can turn away for a while to meditate.

All I know is that my own husband has been putting up with me forever, and that says something huge.

Love you, LJ family.
brightlotusmoon: (Asha)
Yes, obviously. Sheesh.

http://m.huffpost.com/us/entry/6081918

Friends have been sharing this back and forth into repetitive boredom, so I'll just add: Yes, this is obviously a strategy I've been implementing for a while in order to manage my mental illnesses, it is totally part of a very very specific personal therapeutic ritual that will take at least another couple of months to complete, and for Loki's sake, this stuff takes time, quit asking if I'm better yet. I've only been ritualizing for three years; most of this takes at least five. Plus, I can't just magically fix damaged neural pathways by thinking happy thoughts. Most people spend decades in therapy, while their acquaintances urge them to fix themselves faster. The frantic urging especially comes from people who've never even been in states of extreme anxiety, clinical depression, endless chronic pain, obsession, compulsion, memory disintegration, traumatic stress, dissociation, depersonalization, derealization. I often hold back from just punching walls. Therapeutic ritual and mindfulness in mental artistry takes time and a large amount of control. I've only been doing it since 2011. By 2015 something will at least be, as they say, Fixed. At least enough to allow other treatments to fall into place. Until I finish that intense ongoing ritual, I'll keep on battling where battles must be fought.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
My modified Disablility Compensated Qi Gong exercises always help, mentally and spiritually and psychologically and physiologically. Like yoga, except Fake Yoga Cripple Style that is not actually yoga. (FYCS. FIX. Ha ha ha...) (Or hey, Fake Yoga Cripple Style Modified Exercise. FYCSME = FIX ME. Ha ha. Wow. Dude.)

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

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

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

Any form of good physical-spiritual combination exercise, be it yoga, qigong, taichi, strength training, cardio, dead lift weight, isometrics, plyometrics, dance, hardcore dance, etc, is wonderful and beautiful and strengthening, and will help everyone in some personal powerful way. That is the point of exercise.
I love you all. If you really want to help me, don't push me. Just guide me.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
Oh! Oh! I forgot! I'd promised a few people here that I would let them know how I was doing with super high doses of pure Omega-3, particularly DHA. As it turns out, calamari oil is much better than krill. And so, I've been taking calamari oil, which contains 500 mg DHA, and 125 mg EPA, which I think is the highest one can go so far.
https://www.swansonvitamins.com/swanson-efas-super-dha-500-from-calamari-30-sgels
It's officially been one month, so I think it is okay to report my findings so far: I feel as though my brain is, for lack of a better term, nourished. My concentration has gotten easier. I had been considering going back on an ADHD drug for ADD-Inattentive, but the Calamari Oil seems to do what Strattera did all those years ago. Neurologically, I feel, well, hmmm... padded? This is so hard to explain! Neuromuscular issues seem slightly easier. Like, I am starting to unconsciously use my left hand more often for "simple" tasks like pouring liquid, picking up small objects. I can't insert and turn a key in a lock, and I can't squeeze any exercise equipment, but the little tiny compensated things are starting to feel smoother. Does that make sense? It really does feel like a kind of CNS nourishment.
I'm including the link to the product I'm currently taking. There is another brand via Vitacost, called Doctor's best, that offers the same dosage at different prices with different pill counts, but this is what I'm using. I even punctured a capsule to see how my cats would like it. Luna and Calliope seem intrigued. I may just brush it into Jupiter's fur, since he has dry skin.
There have been some studies showing that some brain injuries can be partially treated with extremely high doses of pure omega-3, so I'm happy to make myself a self-advocate subject. I don't know what this will mean for my CP as a whole, and I am not expecting nor hoping that anything major will happen. But I do like this feeling that my neuromuscular issues might ease up just enough to let my hemiplegia become less spastic...
brightlotusmoon: (Snow White Blood Red Light Pale)
You guys, I amaze myself. I've been writing helter skelter all over the place: Novel, stories, novellas, blogs, facebook, notebooks with various pens, everywhere... in the middle of a postictal migraine and insanely horrific agonizing chronic pain flare-up following recovery from a panic attack. If I didn't have a computer or paper I might write on the walls. I hurt so badly I have no idea what I'm doing. I feel half fire and half water. Wild and raging, and all I want is a crackling bonfire and a rushing river.
I doctored up a photo of myself and it came out half gold light and half blue light. It looks inhuman. But part of me adores it so much. My face is two different parts. I am two entities in one. When I burn, I am cool. When I am cool, I burn. It is ying yang, dragon phoenix, up and down, left and right, I don't even know. I don't speak out loud except to my cats, I just speak through Story. So much Story inside me.
That rock. That rock that my husband gave me, the rock that he held while standing in Room 217 of the Stanley Hotel, in which Stephen King wrote "The Stand" and used as an inspiration for "The Shining". That rock is still next to my laptop. I am covered in words. I am filled up with Words. I may disappear into Story. I may not even see the world until I have to.
Is this what it is like to live in the land of the Fae and then come back to the land of humans?

jowitchzen2

Maybe it was the super moon. Maybe it is the heat from the sun now. Maybe it is anything.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
So. I talk a lot about fibromyalgia, often about epilepsy, occasionally about cerebral palsy. I don't talk enough about how the minutiae and tiny complexities of cerebral palsy affect me on a daily basis, because there is so much to talk about with so much to explain, and not even my husband gets everything - in fact, since his brain works too quickly for... well, everything, my brain is slightly illogical, very odd to him. Only my mother and father understand Joanna's Brain. I mean that literally. Someone could insist that they know how I work, but they actually cannot, they are literally unable to figure me out unless they observed me very closely as I grew.
Now. The thing that seems to puzzle people most about my brain is that I have trouble making easy connections between what I see and hear and feel, and what is observed and perceived. It is why I am a terrible housewife. It's why I don't clean the house as often as I should. It's why I forget to do things, why I get scolded, why I can easily irritate people. Connections get lose very quickly and very easily. I need to see, hear, feel, understand, over and over and over. "Jo, why the hell did you do that? Jo, why the hell didn't you do that? Jo, didn't you get that? You forgot to do that! You need to do that!" - phrases I hear constantly. I act on impulse. Often, the impulse is on a childish level, where I just don't notice or understand or even care. Yes, I have OCD and ADHD Inattentive and Sensory Processing Disorder. They do contribute to how I act and react. But I can readily admit that sometimes, it is just me. Sometimes my brain happens without rhyme or reason. I may be a thirtysomething adult woman, but most of the time parts of my brain don't realize it.
Neurology is weird, isn't it?
brightlotusmoon: (Snow White Blood Red Dragon Witch)
I did not write this. I just shared it.

***

Originally posted by [livejournal.com profile] naamah_darling at NIMH does the smart thing, ditches the DSM
The National Institute of Mental Health is abandoning the DSM.

This is potentially monumental, and I've seen very little mention of it anywhere. Partly, I think, because people don't really grok how big a deal this is.

This is a very good thing, and for those who don't grasp why, I will try to explain. (Though the link does a really great job of it, so really, you can just go read it.)

The Diagnostic and Statistical Manual of Mental Disorders (DSM) is a big-ass book released by the American Psychiatric Association that provides a standard method of categorization for mental illnesses based on related symptoms. Like a dictionary, it has given doctors, psychiatrists, and other medical professionals a common vocabulary with which to describe and define mental illness, so they are using the same terms in more or less the same ways, and arriving at consistent (even if they are sometimes inaccurate) diagnoses. It has been revised several times since the first edition in 1952, and has been released in four, soon to be five, major versions.

It has been a useful tool, but it is now insufficient. Over and above the fact that it has always and still does pathologize certain normal, healthy behaviors, which I won't go into here, it relies on a primarily medical definition of mental illness. It does not place a diagnosis in context with the patient's environment or upbringing, etc., or even with their experience of their symptoms.*

That would perhaps be tolerable, but . . . the DSM does this by relying on a purely symptomatic mode of classification, without taking into account underlying neurological/biological causes – different things may cause similar symptoms. So, it reduces mental illness to medical causes . . . but doesn't then require there to be a common cause. Disorders are defined by symptom clusters, and not by actual, you know, hard data about neurotransmitters, brain activity, and so forth.

To liken it to something more familiar, chest pain might be caused by blocked blood vessels in the heart, or might be caused by acid reflux. If we were working by the DSM model of diagnosis via symptomatic classification, they would both be the same, yet I am sure every single person reading this understands that a heart attack and heartburn are not at all the same thing. Classifying them under the same category and treating them the same would be disastrous. (The linked article uses the exact same example, yes. Because it's perfect.)

The more we learn about mental illness, the more we learn that it is a tremendously complicated thing. What seems to be one category of illness (depression) can actually be two or more conditions which appear similar but stem from very different biological causes. Depression might be caused by a lack of serotonin. It might be caused by a lack of dopamine. It might be caused by a thyroid imbalance. There is more than one chemical irregularity responsible for the set of symptoms we call "depression."

As an example from my actual life, until recently, bipolar disorder was not divided into bipolar I and bipolar II. There was just bipolar I, which is the classic "manic-depression" that everyone's probably heard of. You didn't get classified as bipolar unless you had manic states. Because this automatically excluded people whose bipolar disorder skewed toward the depressive side and seldom or never ticked into the manic, or excluded people who didn't recognize mania for what it was, bipolar II was often diagnosed as unipolar depression.

When you treat bipolar II like unipolar depression, you can get a very sick and possibly dead bipolar II person. At the very least, you get a person who doesn't get better, because bipolar disorder does not just go away. SSRI drugs, often the first line of defense against depression, usually do not work on bipolar depression. You can see why this sucks.

This mistake is part of why my mother was never diagnosed properly, and why her depression was never managed. She suffered needlessly because of it. For a long time, I did, too. There are ugly real-world consequences to the symptoms-only approach. Not just human suffering, but jacking up data that could have led to better treatments.

Imagine all the bipolar II people who were thought to be depressed who were doubtless included in data collections, in experiments, altering the results. SSRIs don't work on bipolar people, but bipolar II people totally made it into SSRI testing. We can't know what kind of effect this has had. We can know that it isn't good. It's not leading to better drugs. It's not leading to better treatment. It's leading to mistakes. It's leading us to ditch treatments that only work on 10% of people with a particular symptom, when those 10% are mostly people with a totally different underlying condition. That treatment, applied only to the people with that condition, might be 60% effective or more. We have lost opportunities because of this. It is a certainty.

Back in the dark ages, we went at everything symptomatically because we had no way to understand what was happening inside us. We thought that fevers were caused by poisonous emanations from the earth, or evil spirits. Medical treatment was often "bleed more, poop more, puke more, one of those will make you feel better." Well, now we understand things a lot more thoroughly, and we acknowledge that treating the root cause of a thing is better than going after the symptoms and not resolving the issue. Why address lethargy, weight gain, depression, constipation, high cholesterol, and infertility with who knows how many drugs and treatments when you could just treat a simple thyroid hormone deficiency with one very cheap and easy to obtain drug?

This approach has not really spread to mental health yet. Frankly, that's because we do not yet understand the causes well enough to treat them. Without understanding the causes, something like the DSM has some value, diagnostically. It gives us something to go on, and its not completely horrible or inaccurate or anything, just inadequate and far too broad. Clinging to it is unjustifiable.

NIMH's new protocol, the Research Domain Criteria project, or RDoC, is not a new classification system, it will be the framework for gathering data to fill in the gaping holes in our understanding of how mental illness actually works.

Essentially, NIMH, which carries out a great deal of very important mental health information-gathering and research, is jettisoning the DSM as a classification system for purposes of that information-gathering and research. Currently, the DSM classifications are used when researching mental illness, which biases results inherently in favor of those classifications.

It is not going to transform what doctors do and how they treat mental illness starting tomorrow. What it will do is lead us to a better understanding of mental illness, and over time that will lead to radically better treatment.

This is a big step forward for mental health research. In my opinion, we will start seeing results surprisingly soon, as the first waves of research yield more accurate information. There is so much we don't know that increasing the data set even a little bit is going to improve things.

I'm excited about this. I look forward to seeing what new things we learn.

(The fact that NIMH's announcement comes only a few weeks before the DSM-5 is released amuses me.)

* Example: I "hear voices." Also, I am sometimes other people, a little bit. The DSM doesn't acknowledge those things as a deliberately and carefully cultivated coping mechanism, only as a bad thing indicative of other bad things. In context, it is healthy. In the book, it's pathological. Regardless, it's a sanity-saver, and one I continually seek to reinforce. Doesn't matter how it looks on paper. Say hello to the boys. They keep me safe.

X-posted from Dreamwidth. Comment count: comment count unavailable
brightlotusmoon: (Fae Dragon Alien)
Stuff I want in 2013:

Intangible/Psychological:
Improve my brain.
Allow myself to work with my crazy rather than against it.
Temper my specific particular OCD, depression, and anxiety issues, and realize that it all must be treated as a severe illness that can be healed.
Be here now.
Be more self aware and less self absorbed.
Stop myself before making rash, unnecessary decisions.
Realize I have what I need and want and only take more when it is truly necessary.

Tangible/Physical:
A Samsung Galaxy S 3 smartphone. My ATT contract will allow me to update in July, so I must be patient.
Money to get another hair coloring at Ulta with Redken Chromatics.
Putting more money into savings, just like everyone else.
Read all the books I haven't read yet.
More healing exercises, stretches, massages, etc. I do what I can.
Write. Write. Write. Write. Write. Write.
Finish everything I write.
Be proud of everything I write; know I will be a success.
brightlotusmoon: (Default)
How you know you can tolerate and love me:
Get comfortable and preferably join in while I watch the Futurama episode "Where No Fan Has Gone Before" on repeat while mouthing the dialogue, while I also wonder out loud what it must have been like for the actors in the recording studio, such as who messed up the most takes by laughing so much. Plus all the inside jokes.
And then I shall start talking about animated versions of Babylon 5. Especially certain characters' heads in jars at the Head Museum. Because, you know, Walter Koenig. And the comment about "Look at Walter Koenig. After Star Trek, he became an actor." Smirk, cough Alfred Bester Psi Corp cough*
And then, of course, get comfortable while I start Netflixing Babylon 5. And later, My Little Pony Friendship Is Magic. You think I'm kidding.
This is not the height of my nerdity, but it is close.
Also, I still need to find that Bab5 Psi Corp book series. Hello, Ebay, maybe?
brightlotusmoon: (Pixie Model 1)
Adam and I got on the road at 7:00 PM. Made a few bathroom stops. Blew through Brooklyn at 90 miles per hour. Jersey Turnpike was quick as well. I tried to sleep through most of it. When we reached our parking lot, my head felt foggy and upset and dizzy.

So, upon returning home around 1:30 AM, we unpacked, I had a simultaneous seizure and mental breakdown due to stress, fatigue, exhaustion, and some emotional issues, I took Klonopin and Baclofen, and we slept long and hard.

I am fine right now, perky as I can muster. A very mild depressive episode, but that is to be expected after seizures combined with crying screaming wild anxiety attacks.

(Slightly related: I really don't like talking about this here, but that is what LJ is for, right? My mother and I keep having irritated emotional debates about my body, health, weight, finances, and mental idiosyncrasies. I admit, I consistently have a very insane anxious desire to buy stuff that I already have due to my bizarre fear that everything will disappear, but I've gotten much better, although Mom disagrees and often sends me emails in capslock, scolds me over the phone, and insists that I am a mentally ill addict; I can't deny that. My OCD issues concerning my spending are very very slowly getting under control, and those compulsions are fading more and more; but it takes time. You can't slap a bandage on something like this and watch it heal in a week. There is an active part of my brain that separates when these compulsions strike. The treatment will take months of Klonopin at the new dosage as well as therapy. But I know my sickness, I have admitted and embraced that I need help, I am getting help, and if anyone wants to fight me on it, my psychic teeth and claws have been sharpened to gleaming needles.)

This afternoon, we cleaned up, organized, admired the organization that Charlotte did all over the house, and played with three very happy adoring cats.

I painted my nails with a natural varnish from Honeybee Gardens, a color called Renaissance, a shiny rich burgundy red with subtle gold shimmer, which almost
matches my favorite Honeybee Gardens lipstick, Vintage Merlot, a very deep dark blood red with wine and brown tones and subtle gold sheen.

Jupiter is poking me insistently with both paws and headbutts. Cats come first, after all.

Also, since I completely missed the series premiere of Teenage Mutant Ninja Turtles 2012 on Nickelodeon, I am about to watch it online. My fingers are crossed that it will be fantastic. The voice actor lineup still cracks me up:
Leonardo (voiced by Jason Biggs)
Donatello (voiced by Rob Paulsen)
Raphael (voiced by Sean Astin)
Michelangelo (voiced by Greg Cipes)
brightlotusmoon: (Default)
You guys, I bought nail polish color. And I applied it. Myself. This has not happened in over a decade. This is a big deal, I think.
I bought Sally Hansen Diamond Strength Nail Color in Together Forever, which seems to be a shifting, translucent, pastel, shimmering lavender blush champagne pink seashell kind of shade. (translation: I have no idea what the hell the color actually is; the website showed it as lavender and the bottle was pink seashell. o_O.)
Since my hands tremble, my nails look like they were painted by the ghost of Jackson Pollock. But whatever. The reason I bought nail color was to stop my OCD habit of tearing up my cuticles and also to help train my hand muscles to be steadier because of the spastic ataxic cerebral palsy issues. (woo, brain damage.)
So anyway, I like this brand and product because there is almost no smell, the stuff dries quickly, and the ingredient list includes vitamins, keratin, silica, diamond powder, and platinum powder. Whatever, it was two dollars and it's shiny.
I used to hate anything on my nails; I was very feline. But since my most recent manicure, I realized that having nailcolor might actually benefit me. I just need to learn tips and tricks. Also, SHINY.

Also? My current most-loved eyeshadows are:
Urban Decay in Psychedelic Sister, Loaded, Evidence, Gunmetal, S&M, AC/DC.
Too Faced Exotic in Midnight Mist, Poison Orchid, Firefly, Petals To The Medal.
MAC in Contrast, Tilt, Moon's Reflection.
BareMineral High Shine in Meteorite, Glisten, Moonstone, Frost, Gold Medal, Flash, Vapor.
Maybelline Color Pearls in Persuasive Plum, Silver Spark, Downtown Denim, Navy Narcissist.
I have no idea why I wrote all that, but I guess it is because I want to remember.

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