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: (Snow White Ruby Blood Dragon Witch)
Seizure happened in the kitchen. Jupiter meowed and rubbed against me while I crouched. Adam came in and gently lay me on the floor. My eyes were open and blank. Adam touched my face and reached for my mind, and I spasmed and gasped and blinked. I asked why I was on the floor. Adam helped me up and stood me against the large freezer. My memory is swirling. Alicia is holding me. Earlier, Adam said he told his boss, a fellow animal lover, that he needed an extra day to care for his wife. I rolled my eyes and said that was not necessary; that I was fine. Never mind. It was so dark and so white equally braided as order and chaos magics. I was spinning at ninety-nine percent light speed and thirty-five miles an hour. The world was elsewhere. A few seconds lasted a thousand years. Adam suggested I go upstairs and rest. Jupiter is suggesting a cuddle. I am thinking coffee and clonazepam and baclofen. I am made of light and love and pure order-chaos magic in its simplest form. I can give myself the right strength. May be that I can regenerate. As brightly and intensely as a Time Lord. I always shine enough for everyone.

brightlotusmoon: (Snow White Ruby Blood Dragon Witch)
A collection of replies I've given during a CP support group discussion about spastic muscle spasms that are more stiffness than twitching.
Oh, that fist thing? I get that every morning. I actually do say, "Fist clenches, impossible to willingly unclench it, must actively attempt to unclench fist, since brain is not making it work."
Augh, quad spasms. Hm. Um? (I have epilepsy, partial seizures, and it really is so not like that, so I'm thinking...)
Okay. How about... "It is like when your muscles tense up after you work out really really hard and you cannot for the life of you get them loose or relaxed, and it doesn't stop"?
Yes, NOT TWITCHY. Painfully clenched doesn't work?
Exactly - that's what I was trying to say. Your muscles are so tense and clenched tightly that you must consciously, willingly, actively attempt to move... rather than just moving. Example: You want to wiggle your fingers? They wiggle. It just happens. But with CP, it can't quite happen. You need to kind of force it. You need to tell your brain to make your body move.
I call it "microspasms" - you can't really see them, not like a twitch. But the spasm is so tight and small that it is more of a severe stiffness.
That twitchy spasm is probably more like myoclonic jerks, which are common. The non-twitchy spasm is more like the fierce stiffness and tightness one might get after working out at a gym for hours or lifting very heavy things (to put it in AB perspective I guess?). You know how people will say "Oh, I just got back from the gym or yoga or my workout class and now my arms can't move, I'm so stiff, ohh, I hurt so much!" and you just kind of... look at them? And you almost, almost want to say, "Yeah, I get that. Yeah." Because, you know, cerebral palsy with spasticity is almost like that except kind of forever Lulz? But you hold back. Because pain is pain is pain. I can't compare.
(Although I have known people who have told me, to my face, "You have no idea how much this hurts!" and I seriously bit the inside of my cheek.)
But yes, that extreme tense and clenched stiffness in which your muscles cannot work by themselves, unless you force them to. That is what I call it. :p
brightlotusmoon: (Snow White Ruby Blood Dragon Witch)
Reposted from FB:
*tilts head back and forth*
So many, many times, I just don't feel like talking. It depends completely on how I am feeling at any given time. There are very few people with whom I would want to talk and talk and laugh and laugh for hours, and not notice the hours for the laughing. It can and will energize me bit by bit, even if I am exhausted. That whole 'drained introvert thing' still happens, but the energy levels keep rising. Because of what we are talking about, because of why were are talking, because a lot of things.
But somehow, if I don't feel like talking even if I had just been vivaciously howling with laughter, I often get scolded. You know. Oh, you were just doing that earlier, so why can't you do it now? That kind of retort, the kind that says more about the other people than about me. Sometimes I just run out of everything. Sometimes, gray things happen. That's okay. That's okay, right?
Migraine migraine migraine. Codeine codeine codeine. I'm one of those chronic pain patients who cannot imagine ever abusing a pain drug because, well, pain. It's my pain. I don't necessarily want to have to take a drug like codeine for this kind of pain. I don't want anyone to see me as a drug seeker because my gods no.
But yeah, the drugs may provide some desperate relief - but I never want to need more than I have already.
Migraine plus spasticity plus deep fatigue plus neurological twitching is evil. I had pain in my dreams. Just. No.
Dear Complainers of 2013: The Complainers of 1871 called. They want to write you lots of long letters. Lots of them.
Damn it, I still feel like shite. This has become ridiculous. I can barely breathe now. Aargh, life.
If you do not want the flu shot because your immune system is awesome, yay for you. Seriously. Rock on. I will not ever insist that everyone get shots. I learned my lesson last time when people screamed at me so hard I lost my head. (and also now I have that song "Shots" by LMFAO running through my head. "Shots shots shots shots shots shots shots, everybody!" "I hate flu season.") Please do not assume I am jumping on you. If you do not think you need the flu shot, then don't get it. As long as you're not telling me that 'vacciness cause autism!', we're fine (because hi, autistic person here, and that's like saying autism is worse than diphtheria, and have you seen how diphtheria kills people and have you seen how autism doesn't kill people at all?) and I won't say a word. If you don't want to click and read, that's fine too. Just please please please don't jump on me. (Also, if you do wind up getting the flu, I cannot be anywhere near you, because I am an at risk person and I might, like, die.)
And remember, if you do get the flu after you get a shot, just remember that it takes time for your body to build up defenses - it was not the vaccine that caused your flu, but the flu itself because it sneaked in before your body could activate proper antibodies. That is how it works. The flu shot cannot cause the flu. Only the flu can cause the flu. The flu shot does not work against all strains of flu, but it can help against most. Just... be informed. Be properly informed. Okay? Okay?
"We are what the gods have made us. We can go consenting through the world." -New Model Army, "Seven Times"
brightlotusmoon: (Snow White Blood Red Dragon Witch)
And now something is happening in my brain, and I cannot pinpoint it well enough. It could be another wave of depression, or a wave of panic, or a wave of just... I don't know. I have two dozen medical issues; pick something. It feels as though my brain is physically spasming. My amygdala feels weird, as though it wants to say something and cannot remember.

Adam is off again, so he can take me to my pain specialist, and then maybe we can go to Barnes & Noble so he can get me the Twilight Sparkle plushie to go along with the Fluttershy vinyl doll that he brought home from New York City along with bagels.

We made chocolate chunk cookies, with cream cheese instead of butter. We practiced Reiki. Adam is what I like to call a raw magic mimic. All he has to do is watch someone perform an energy form and he can re-create it in raw form. Like when he was in New York, a random monk brushed past him and slipped a wood bead bracelet around his wrist, whispering, "peace to you, mage" - and with that touch, Adam absorbed that energy, and when he came home he touched me in concentration and I felt so much calm and serenity that it was almost like being high. I guess it's kind of like being Peter Petrelli, or Rogue as she can now control her powers. He can call the energy at will. I'm envious. I need to to that for myself. But maybe I can't. Maybe it wouldn't work if I tried it on myself. Maybe the energy would only move outwards. We shall have to discuss the physics and chemistry and neurobiology behind it.

We've replaced the coffee grinder. It is black. Black fridge-freezer, black big freezer, black oven with black microwave range, black dishwasher. All we need is a black Mr Coffee and a black can opener.

I love my Chobani Lime Greek Yogurt.

Yeah, it's a depression. With a slowly stalking panic attack. Regarding my previous post: I definitely would want a cure for that. It is strangling.
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: (Pixie Model 1)
I just realized that I haven't posted in a while, not here. Busy, I guess, reading all those books I haven't read. Damn Kindle devices and all that. Over the weekend, my college best friends came for a visit, the first time since 2001, and it was fantastic. In DC, at the the Smithsonian Museum of American History, I got a wheelchair from security, and Tish and Rin were happy to push me around. The Spy Museum, The Cooking exhibit, the Golden Books exhibit, even the gift shop (at which I bought a Military Space Pen and a copy of The Shy Little Kitten from Little Golden Books, and also a stainless steel water bottle with ninjas on, and a coffee tumbler with kisses and femme fatale quotes on).

Rin taught me about cold-brew coffee, and now I am all about it. Yesterday, I left the French Press brewing from seven at night to eleven in the morning, and today I set it up at seven again... I will probably let it sit until ten or eleven tomorrow morning. I am still astounded by the smoothness, the lack of acidity. It still needs chocolate and sugar (cocoa, maple syrup or honey or palm sugar, cream or whole milk) but I am extremely impressed. Cold brewing overnight in a French press, for around 15 hours or so, makes me happy. And when husband wants his hot coffee, we can empty the press and refill it with boiled water over more grounds - or he can use the espresso maker. Lovely.

Coffee is great! Coffee is great! Coffee Coffee Coffee Coffee Coffee... -ahem. Sorry, that was Bender with Fry in the background.

We went shopping, as well, and at Sephora in Chevy Chase I purchased my new currently favorite red lipstick: BareEscentuals BareMinerals Marvelous Moxie Lipstick in "Call the Shots" - the website called it a 'rich scarlet' and it really is. A lovely dark pomegranate neutral red. The formula contains many moisturizing oils and peptides, which of course always matters. Call The Shots is very similar to my beloved BareEscentuals Buxom Full Bodied Lipstick in Provocateur, a true red with pink tones, but the Moxie lipstick has less pink.

We ate Belgian waffles with cream and strawberries, washed down with strong lattes. At home, my cats loved them constantly. When they left on Monday morning, I had happy tears in my eyes.

A migraine plus a tension headache and sinus pressure has been slamming into me since Monday. Today, at my pain specialist appointment, when I told the nurse about it, she grinned and said, "So, everything is fine and normal, huh?" and we laughed.

Ah, my head.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
First written on Facebook. Important.

Okay. I am linking to that new Hyperbole And A Half blog post about depression again mostly because people have been messaging me asking me if I have seen it. I have read it so many times that I already linked to it at least three times. But I am also linking to it because I have much more to say.
And again, I shall repeat what else I have said:

Here is something I hate about my major depressive episodes: The only emotion I feel, aside from flatness and trembling, is crying. I hate crying. I don't know if this is "normal within the parameters of various depressive illnesses."
I don't know if involuntarily crying means that I feel something good enough, or that it just means I am Processing Things.
The strangest, smallest things make me shed tears. I don't feel sad or upset. I merely start leaking tears and choking up. It bothers me. I want to feel Nothing. I am chemically and psychologically unable to feel Nothing. Even when I am in The Fog with The Voices. I feel Everything. Except that it is not really a Feeling, it is a Knowing. It is a Knowing that causes physiological changes to make it look like Feelings, such as crying. It is horrible. All I want is to Exist without Feeling for a little while, until something makes me laugh or cry or feel rage. Even then, I want analytically work with it, turn it over and over, tap it until ripples and tap it until cracks form, and then I would stick it under a microscope.
I cannot help but Feel and Know. It makes me cry. Why?

And, see, this is another thing: Every person with Medical Depression has different experiences. My experiences are not quite the same as someone else's. Often, I am able to hide it. Often, I am able to fake being happy and fine. And when someone suggests I act silly and do funny things and read/watch funny things to "clear the depression" (LOL awww), a part of my brain shifts forward and announces "Okay, let's do this. We don't have to truly feel it, but we can be superficial about it. Can't hurt, right?"

My husband knows exactly what to do. He has had experience in ways no one else has. If I tell my husband I am in a Depressive Episode, he simply offers me something he knows I like. Chocolate or a fruit snack or a cheese snack, or an episode of Futurama or My Little Pony. Brushing the cats. He doesn't even try to talk me through with platitudes or "Why don't you exercise more or laugh more?" He just smiles, says, "I love you" and hugs me when I want to be hugged. He waits for me to feel slightly more genuine and then very subtly helps keep me floating in Genuine Feelings until I am able stay there on my own.

When I cry during an episode of depression, it is not because I am sad or upset or distressed. It is because my Reservoir of Cope is being so overflowed that it can only leak out as "crying" which is not actually "crying because I am sad and also what is sad" but which is in fact "Something inside me is too big and too wild and too intense and it will release itself in whatever way it sees fit." Same with laughing. I don't want people to be fooled. It doesn't go away that easily. The writer of Hyperbole And A Half, Allie Brosh, went through it for over a year and a half and is still recovering. For many depression sufferers, it is known as Tuesday.

All I ask is for patience. Do what you will. Do it naturally. Laugh, play, be comedic. And I will put on that necessary costume, allow that coping part of my brain to shift forward, and I will laugh, play, and be comedic right along with you. Eventually - be it days or weeks or months - I will no longer need the costume as the coping part of my brain gently moves back to its home. I will feel Genuine if not Better. I will have honest full feelings of Not Depression At All.
(Not every depression patient can do this, though; be aware.)
But here is what I do not want: Platitudes. Blatant attempts to cure me with anything, be it herbs or drugs or foods or exercises. The analogy of the dead fish written in Allie's blog post.
And here is what I do want: Friendship. Plain old simple friendship. Love. Companionship. No need to help me heal myself. I will do that on my own because it is what I do.
Again, for reference...

Original post:
I want to say "My clinical depression has slightly lifted because I had pep talks with friends and because I looked at adorable cat pictures on the internet!" I want to say "I feel slightly less horridly depressed because everyone tells me to refocus my feelings, since even Nothingness and Random Tears Without Distress are feelings!" I want to say so many things.
But right now, I just want to write stream of consciousness fiction until my amygdala screams and implodes. Maybe that will help lift the depression. Maybe it won't. Maybe it will trigger a seizure or two.
Maybe it will turn all these Wait Are These Actual Emotions? into Real Emotions! that I can have honest reactions to, beyond my Reservoir of Cope being so overflowed that it can only leak out as "crying" which is not actually "crying because I am sad and also what is sad I don't know" but which is in fact "Something inside me is too big and too wild and too intense and it will release itself in whatever way it sees fit."
And so, I will continue to write stream of consciousness, and I will continue to reply to people who tell me "Just smile! Just cheer up! Life is beautiful!" with gentle headpats and "Aww, you are so adorable, you think you're antidepressants!"
Eventually, something will happen. Something will push me though. That always happens. I just need to look for it and hold onto it in a long, whimpering hug, until it makes me feel myself again.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
Hey. Hey, you. Self. Body. Brain. Person. Yes, you. This is why you require medication every day. Now stop taking ten minutes to type a single sentence and go take your pills. Also, good, you ate food. Now go make oatmeal and store what you don't eat in the refrigerator.
brightlotusmoon: (Default)
I think my "give a fuck" just broke. It's bad enough that I'm in a major depressive episode and already filling up with self-loathing about everything I do and am. It's worse when I forget myself and defend my medication choices to a douchebag who is yelling at me with "All Big Pharma Is Always Evil Forever. You need to stop taking all your poison drugs and just eat these specific plants and herbal formulas, since they will cure your pain and your seizures and your depression and they will even heal your brain damage so you won't have cerebral palsy anymore."
I admit, I flew off the handle just a bit. You know, "Listen, moron, I did the purely holistic thing for twenty-something years, and then I was prescribed a seizure drug and a painkiller drug and a muscle relaxant which completely changed my life in many ways, because I had never known what it was like to have loose, relaxed muscles that didn't clench, spasm, feel paralyzed, or feel like burning. I mean, holy shit, people actually live like this normally? Is this normal? I should have done this sooner! Why hadn't I done this sooner?" And how I looked back on my other life and realized how stupid I was: because even if Big Pharma Is Truly Evil, sometimes they get it right. Sometimes just one drug, or three, can change the life of just one person in unimaginable ways.
And then I explained how I still use supplements and herbs and plants and holistics, and I carefully balance everything, and how I met with half a dozen different doctors who all decided I did not have an addictive personality and that it would be perfectly safe for me to take the wonderful drugs every day. And how strangers on the internet tried to call me junkie and addict without knowing a single fucking iota of a thing about me.
And I explained that because I was in chronic pain, constant agony, and major suffering that was not going to stop on its own, it was safe and fine for me to continue taking the drugs, and fuck everyone who tells me otherwise. And then I explained how sometimes I am in far less pain than normal and when I took one of those drugs, nothing happened. At all. So I was not becoming addicted, because I felt nothing if the pain was not great enough to require drugs.
And then I said a few more angry things about judging strangers because you are not actually concerned about them, you just want to project your personal bullshit onto someone who is doing something that perhaps you or a loved one used to do and it led to addiction and it was horrid for you, and perhaps you have made it your superhero mission to save everyone you encounter from the awful evil Big Pharma that destroyed your life, and perhaps it's easy to yell at people over the internet because you don't need to see their faces or show your face and you feel you have perfect control because the poor stranger is obviously spiraling downward into a terrible tragedy of dependency that only you can save them from.
And by "you" I mean "stranger asshole who decided she knew exactly who I was, what was wrong with me, what I needed, what I didn't need - because obviously those Big Pharma drugs were killing me rather than saving my life in multiple ways."
So, I sincerely apologize if anyone reading this feels slapped, because that is not what I'm trying to do. Normally, when someone gives me the "Drugs bad, herbs good" speech, I just smile and say, "Balance and harmony in all things. Every person is different with different responses to different treatments. Some patients cannot take supplements, and some patients need drugs to continue living a fairly easy life. I am very lucky that I can easily take pharmaceutical drugs and natural supplements in balance. Maybe some day, I will find a plant or vitamin that can legally replace all my prescription drugs forever. I doubt that, because I need certain drugs to keep certain illnesses in check, but if I can reduce the prescriptions and have a supplement as my main treatment, that would be wonderful. Until then, nobody needs to tell me what I should and should not do with my medical health treatments." And that is the most polite thing I can say.
brightlotusmoon: (Default)
Damn you, migraine. Damn you, muscle burning. Damn you, sciatica. Damn you, hemiparetic tremors. Now I can barely watch cartoons, let alone meet that word count I wanted. I think I will just throw treatments and meditative exercises at you until they stick hard enough to make one or all of you retreat whimpering in tears like that red dragon under the stare of Fluttershy.

Well, at least I don't have Tritonian Hypermalaria or Yetiism. Also, I am not on fire. Bonus!

Dear skin: I don't know what I did to make you so itchy. I didn't eat too much soy, nor did I eat pure soy, nor did I eat kiwi fruit. And I don't have any other food sensitivities. I did not come into contact with anything that might cause contact dermatitis, not that I know of. So it is tamanu oil and other anti-badstuff oils for you.
brightlotusmoon: (Default)
I have been hiding it, I admit. It's not scary, just... disconcerting. I am not doing well. CP and epilespsy symptoms waxing. Spastic tension, that hurts a lot because these muscles are working out without the mind, working so hard and not stopping, they cannot stop. I feel the burn, and yes it burns.
Aphasia and short term memory loss. I forget what things mean sometimes. And I just forget. However, the Trileptal is working amazingly well. It really is. I think I am just unbelievably stressed and perhaps mildly depressed. I do not know why. I am so tired, so tired, exhausted and fatigued, even the latte doesn't always help.
My fingertips and toes are numb and cold, they tingle and vibrate. Pinprick heat nerve pains along odd parts of my body; especially the neck, shoulders, lower back, backs of the thighs, hands, arms, knees, feet. I feel as though the inside of my body is vibrating at certain nerve points. Intense muscle fatigue. Migraines. Violent muscle tension in my shoulders and neck. Bizarre bloating when it's not my period. Sometimes I'm constipated, sometimes it's the opposite. TMJ. Intense anxiety attacks. I've had to find new concealers and foundations because my skin has gotten paler naturally, although I am not sure if that is a good thing.
Time to talk to the doctors, yes.


brightlotusmoon: (Default)

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