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.

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)
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 Makeup)
I'm... oh, hell, what is just under "okay" but not near "bad" or "poor"? Medication and meditation have both helped immensely. Cuddling with spouse and cats has helped immensely. I was laughing. Except there was still that Dark Nope in my mind, flattening me and reminding me that darkness was everywhere in my brain right now. There is absolutely no point in pasting on a smile and ignoring the depression, because fuck it, there it is, and it will end when the episode ends. See? Clinical major depression is an entity, and it will leave when it is ready. It can be coerced, cajoled, enticed, forced and tortured. But sparkly thoughts are not a treatment. I have not and do not live any part of my life by the so-called "The Secret" book suggestions. Nice idea though.
I have been envisioning things that relax me, entertain me, and amuse me, of course.
Best to take my pills with something decent in my stomach - milk in coffee, juice, yogurt. Followed by a full meal. I just have no feeling for an appetite. It's not a rejection of food, it's just a lack of feeling hungry. I ate half a burger with sliced cheese and yuk choy vegetable dip, washed down with thick acai pomegranate juice. It was plenty.
I just feel empty, dark, slow, neutral. That is it. Neutral. Shrug. Whatever. Okay. I don't mind. "I have no strong feelings one way or the other." (Hah! I knew I'd find a way to quote that line soon.) I don't really want to go anywhere particularly to anyone else's houses and couches. If I were to move, it would to go walking, shopping, moving for exercises. I'm just a cat. If someone wants to hang out with me, they had better enjoy sitting on a couch, reading books and watching TV and browsing online. With the occasional discussion about physics and neuroscience and maybe fandoms.
See, here's the tricky part: Depression is a great pretender. It can put on a perfect mask. It can smile, laugh, and interact with the best of them. That is what viruses do. It can move me, control me, make me do whatever it needs me to do while it quietly spreads across all my nervous system and tweaks each little neuron so that gradually it overcomes its host and becomes a best friend. Creepy, isn't it?
But I will know. I have been learning. That is part of my library magic, my moonlight magic. I am just as sneaky. I have weapons. I can sneak into the main consoles and screw with the auxiliary systems before I even start working on tampering the primary systems. Sometimes I get caught and I get locked up and I even get tortured. But usually it is worth it.
In conclusion... I will be okay. For now, I am that thing just below "okay" which is nebulous.
Nebulas are pretty.
I've been watching too much Star Trek. I don't even care.
brightlotusmoon: (Snow White Makeup)
Yeah, I think I'm starting to slip into a depressive episode.
I just want to stop reacting whenever anyone insults me in any way.
I feel like crying over... I don't know, nothing and everything.
That is why watching Futurama and My Little Pony Friendship Is Magic is comforting, so shut up.
I want people to stop telling me how to be or not be physically and mentally disabled, bisexual, ethically Jewish, eclectic pagan, psychically sensitive, a female, very short, curvy slender, balanced between holistic and pharmaceutical medicines, a writer, a reader, an intellectual, a human.
I want to remind myself how to ignore those people and live my life my own way no matter who says what. I want to stop reacting and overreacting. I want to remind myself to just shut up and walk away with the knowledge that they will not learn nor understand, but others will.
I want to learn how to actually make and keep more friends on my own without wanting to run away.
I want to squeeze all my toys and dolls and meditate and cry cleansing tears.
I just want to be.
brightlotusmoon: (Peaceful Dragon Model 2)
Reposted from Facebook, because dear mighty Isis, I am so exhausted...


*giant sigh*

Okay. Before I do this, I must post a disclaimer: This is not directed at anybody in particular. This is not in response to anything anyone has said. I am not upset or angry at anyone. This entire thing, in fact, has been something I have been writing for over a week and have been trying to edit it down to the bare bones. This, in fact, is dedicated to all the disabled and chronically ill people who have been trying to reassure friends and strangers that they and their doctors know what they're doing.

Also, I guess I should add that I am not everybody and everybody is not me. I really don't want or mean to sound snarky, but I've had recent discussions with ALL my doctors.
The neurologist and pain specialist both said in slightly different words, and I quote, "Well, you seem perfectly fine, considering. Sometimes the medications can't hold back every single symptom. That's nothing to worry about. Your breakthrough seizures haven't put you in the hospital. And just because someone on a similar drug hasn't had a seizure in years doesn't mean that your nervous system runs the same way. Don't worry. Just keep taking the pills as recommended, and don't worry about all the horror stories out there. You are you, your body is yours, your brain is yours, and only you know how you will be truly affected. You are on very high doses of medications. Sometimes they may not be affective if you've been under stress. This happens all the time. I'd rather not put you on new drugs or higher doses right now. Just monitor yourself, and try not to listen to people who insist that you need something better. It obviously causes extreme anxiety for you. The only one who knows would be you, relayed to me, and I'm your specialist doctor, after all. So, please try to relax, okay? You're fine!"
In fact, I wrote all that down while I was at their offices in order to transcript it online.

So, I must say this now: Please please do not assume that my health is poor because my medications are not totally curing or stopping my various symptoms. No matter who you are and who you know and what you believe, you are not inside my body and brain, and you are not my doctor, any of them. My most recent blood and urine tests showed that my body is saturated with medications so much that I was told to cut back on one drug from every day to every two days.
I hope this helps reassure you that I really am fine, and that the only help I need is from my doctors. Big Pharma is not always evil. It just depends on the doctors you see and how different drugs work in your own body.

In conclusion: I love you all. I thank you deeply and sincerely for all your concern. But I put trust in my doctors, whom I have known for a long time. I put trust in the drugs that have kept me functioning for years. I know I post a lot about my seizures, my depressive episodes, my chronic pain flares. And yes, Facebook is not a good place for that, because people get the idea that all I do is whine, cry, and throw tantrums about my disabilities. Facebook is not like Livejournal or blogs: It won't be like a record of events. And so, my friends often wonder if my treatments are even working. They are. My fucking gods, they are working. But unless you have the medical conditions that I have, unless you understand my brain completely, unless you are on the types of medications I am on, it is going to be fairly difficult to understand. And so I beg you: Please stop telling me that my drugs might not be working properly. It's not your place to say this. In fact, I will give you this: Email me, and I will give you the names and phone numbers of all my doctors, specialists, and nurses. I will give you the names and doses of all my prescription drugs. You can call all my doctors and voice your personal concerns on my behalf. Maybe they will agree. Maybe they will commend you. I don't know. It might be a fascinating thing. But in the meantime, I guess I will have to cut down severely on what I talk about on Facebook regarding my health. Because I don't know how many more times I can compare medications to levees, dams, and superheroes that can only do the best they can, and I don't know how many times I can explain that just because Person A has been doing just fine for many years does not mean that I am just like Person A. Everybody and everybrain is different and reacts differently.

I desperately hope that this has helped explain things. I know we've all been feeling like broken records. So. My goal from now on is to gradually stop telling Facebook about my seizures. And then I will gradually stop telling Facebook about my fibromyalgia flares. And then the depression. And then all the other disorders. And soon enough, Facebook will just hear about happy things from me. No. That's a lie, and I admit it. I will still post about those things. Because my fellow pain warriors need my support, since we have all already established our tiny support groups. I would be abandoning them. But I have promised myself that I will cut back on public status posts regarding epilepsy, because that is what brings out most of the concern, and I don't want the concern, since it reminds me too much of the fake and nasty online statements of "I'm just concerned for that person's health even though I don't know that person" when it's only an excuse to mock and tease the person. I know full well that it is not what is happening with me, but it happens with many of my friends, and I have a reflexive reaction that makes me want to snarl. I welcome friendly concern, I really do. But please don't force it. Voice your concerns, then back away. I will smile and thank you, and I will continue updating my doctors. That is all anyone needs to know about my health.
Again, if anyone feels offended, please know that none of these statements are directed at anyone. And if I can't be convincing, then all I can do is apologize. This is my life. This is no one else's life.

Also, wow, my hands hurt. That was a lot of typing in just a few minutes. I need a break.

I love you all so, so much. Thank you for caring about me. Just please keep in mind that my health issues are between me and my physicians. Thank you.
brightlotusmoon: (Default)
I'm not sure how it happened or why, probably something post-ictal, but... yeah, who the hell knows.
Early this morning, Adam and I were picked up by Charlotte and taken to our dentist for Adam's first tooth implant. After that, Charlotte took us back to Big Lots and bought me the memory foam bathroom mat I had been craving. Once we were home, Adam picked up his car from the auto shop nearby, where he had gotten an oil change among other fixings. Adam and Charlotte then went to work fixing our old dining chairs, making new cushions and spray painting the metal parts gold. I was feeling particularly sore and pained, fibro-flared and spastic and weak.

I went upstairs, to the laptop, did my usual online things like webcomics and blogs and research. Felt hideously fatigued and drained beyond description. Let myself fall back against the arm of the couch. The clock read 3:45 when I closed my eyes, just for a small nap. I opened my eyes, and the clock read 6:45. Stunned and confused, I scrambled to check all other clocks until I was assured that it was three hours later. How could I have slept on a couch arm for three straight hours? It felt like a seizure blackout. I might have even done things during said supposed sleep. I do that, sometimes. That's what the extra Klonopin is for.
Then again, no surprise.
I have been severely stressed, emotionally compromised, shocked and stunned, struck over and over by strange incredible waves of euphoria and relief and worry and confusion and elation and ecstasy and a sort of sick sensation. Waterfalls of shock and sensation and emotion pouring off me to pool around me, cracking and fragile and stripping me until I'm shivering. Over a year of waiting and fear and worry and uncertainty and insecurity and being outside my comfort zone too many times, stress and anxiety and terror and depression and gasps for thin air and nightmares and the abyss of the most unknown things waiting to swallow me. I don't remember things that I did a day before, or I run on pure impulse, instinct, and emotion. It may happen again once the disability money is in my account next month or the month after. I have never experienced this before. Those who have been there assure me that it is common and that I am definitely not alone. I am very glad for that. I want to cling. I have told my friends, "I may cling to you, I may beg you to tell me what to do." Having the thing that I've been fighting for is so huge that I can't see beyond my own hand right now. I am so small and this is so big. My doctors know. My lawyer knows. They will help me. They promised.
brightlotusmoon: (Default)
Dear doctors and neurologists and other specialists,
Please listen very carefully to this sentence. And then tell me, slowly, what part of it you do not understand:
"I do not want children right now. I have no plans to become pregnant. I may not want or have any children for a very long time, as in years. Please stop placing the non-existent health and well-being of a non-existent potential possible fetus over my own. Yes, this medical condition and its medications may interfere with a pregnancy. Yes, I should keep this in mind if and when I decided to become pregnant. But I -- hey, are you listening? I said I don't want kids right now. Why are you telling me that certain medications may harm my fetus? What fetus? I see no fetus. Wait, this isn't a projection of your own desire for a fetus, is it? 'Cause, you know, that'd be sad."

Note: I am angry in general, because several women I know are being told by their doctors that the treatments they want for epilepsy "could harm any future pregnancies." And the women are being denied said treatments, being offered horribly drastic alternatives to "protect the potential for pregnancy" which would ultimately leave the woman scarred a thousandfold (like brain surgery), and basically being told that what they want doesn't really matter much. The doctors, when they finally understand the lack of a desire for kids, are loudly offering sterilization options, which could also be scarring. You don't need your brain, but gods forbid your potential womb fruit is harmed! We should just make sure you never bear womb fruit, then! These women feel their personal rights being stripped away. It hasn't happened to me yet, thankfully. Although my male neurologist does seem to love pressing on me the fact that should I ever become pregnant, I should do this this and this -- and hey, am I planning on becoming pregnant anytime soon? He asks me this at every appointment. Gah.

Apparently, nonexistent hypothetical children that may or may not be conceived in any foreseeable future have more rights than the women who may or may not bear them. Huh. Okey-dokey, then.

Hey, novel concept: How about we concentrate on the living children (and growing fetuses) that are already here? They actually exist, you know.


brightlotusmoon: (Default)

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