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 Blood Red Dragon Witch)
So there was a seizure. It lasted four to five minutes. I am ridiculously discombobulated and typing very slowly. Dysphasia abounds. Typing is easier than talking. Spasticity is violent. Shaking is violent. Burning, stabbing, electrifying, gnawing.
My Rose kitten was on my lap and purring and licking my face and my face. I was away. I sensed my body, arms crossed, rocking back and forth, falling back in the chair, mouth open, head to the side. I heard things. Futurama on TV, dialogue mushy. My cat purring. I felt unchained and inside a plunging elevator. I begged for Alicia. Everything was so dark. Someone took my hands, hugged me close. I glimpsed long shining blond hair I cried and yowled. I just wanted home. I felt too weak.
As I began to awaken, my first words were "Rose... Rose... kitty..." and my right arm lifted and I managed to touch her and pet her. She nuzzled my fingers. I cried and gasped.
Now the world feels so strange. I must sleep. Is it all right to sleep? I remember days, weeks, months ago... someone yelled at me and insulted me. I don't remember, I don't care. I remember minutes, hours ago... someone was talking about makeup colors to ease my panic. I was comforted, entertained. People were commiserating. I felt like a member of a powerful group. I was a warrior in the world. I am a drained tired weak sad warrior. I am covered in blood. I want to sleep.
Can I sleep?
I am a Dragon Princess, too.
I can't remember the episode; only cool, velvet darkness, and a blond woman holding me. I remember breathing in cold dry air. I remember thirst. I remember crying so hard.
My skin hurts.
I am typing this with two fingers.
Can I sleep now?
My head hurts.
My soul hurts.
I am still a warrior.
Can I rest now?

I must write this down. I must, I must. I need records. This journal must know. As much as I can.
Two fingers. It hurts so much.
Those pain pills are working well. I am grateful.
I am thirsty. I am dizzy. I may crawl to bed. I have many canes. I will not crawl, not if something can hold me up.
I want a hug. A cuddle. I want someone to say, "I love you. Everything is wonderful."
Even online friends can do that. I do not care what anyone says. Some of my greatest loves are online, states away across the country, and I will never let go.
I love you. Everything is wonderful.
May I sleep now?
brightlotusmoon: (Default)
So, if this is true, then I think I know what my own set point is. Currently, my set point seems to be between 104 pounds and 114 pounds. Excluding fluid retention, bloating, heavy meals, and natural fluctuations, I've never gone above 114 pounds, not more than two or three pounds that always went back down quickly. I remember than being below 104 made me look sick and malnourished, and obviously my body was not meant to be than skinny. And my body knew that.

When I hit puberty at age eleven, I stopped growing taller than 4'11. I weighed 88 pounds. I stayed that way for a couple of years, then gained maybe seven pounds and stayed that way throughout high school. Throughout my teenage years I never went above 100 pounds. I ate healthily, I was as active as I could be with cerebral palsy and other health conditions. My metabolism was hummingbird fast.
When I entered college, I did gain weight, as many freshman do. Not the classic 15; only 8. I stepped on a scale at the campus gym, and when the scale read 101, I panicked, I admit it. I honestly believed that I "needed" to be under 100 pounds, because of my height. Over the next couple of weeks, those eight pounds disappeared with all the running around and sparse eating I did, and I was secretly extremely relieved. But I was not yet trapping myself in the endless loop of anorexic thinking.
When I was 21, at the end of the summer, I noticed that I was gaining some great muscle tone. My hips looked slim, my waist had a nice supermodel curve. I weighed approximately 98 pounds and I certainly could have gained five or ten more pounds and looked even better, but at that moment, in the full length mirror, I was thrilled with what I saw.
I believe that was the beginning. Some say than in regards to eating disorders, "genetics creates the gun, environment loads it, and extreme emotional experiences fire the ED bullet." I think that's very very apt. That's basically how it was with me.
For the next four years, I plummeted. I decided that weighing above a hundred pounds was unacceptable. Originally, I had been afraid of the college campus food, but once that concern subsided, what was left was far, far worse. The disorder had taken over and was eating me alive. My body struggled desperately to get to the lowest end of a set point it had never known. And I wouldn't let it. Not until one day, four years almost to the day, when I broke free.
So. Whether or not the set point theory works for everybody is not something I want to debate. But if my set point leaves me destined to have these curves and this padding, then I'm happy with that. I honestly do not want to go below those hundred pounds ever again. In fact, I remember a day shortly after I began recovery: walking back to the bus stop from a doctor's appointment, having weighed myself and reaching 101 pounds exactly. I took out my cell phone and texted excitedly to my best friend Beca: "I just broke 100 pounds!!" And then I called my husband and told him. I was delighted. I was happy. I was shining. I was climbing back to health.
I'm at that point now, and more. And I'm ready to go down a little, just a little because I'm okay with how I am.
I realize that everyone is very different. There are women my height who weigh 90 pounds and are quite healthy, other women my height who weigh 130 pounds and are quite healthy. In the end, the set point isn't about the weight that makes you look attractive to society; it's the weight that your body is best at, healthiest at, and ultimately most beautiful.

Still thinking.


Jun. 11th, 2007 01:33 pm
brightlotusmoon: (Default)
Gaining: The Truth About Life After Eating Disorders

One of the reviews:
Read more... )

She expands on the thinking that "genetics loads the gun and enrivonment pulls the trigger" in terms of biological predisposition and experiential triggers for those who suffer from eating disorders by writing about the position that genetics creates the gun, environment loads it and extreme emotional experiences fire the ED bullet.

Mmm. Yah.
I want to show this to my mother. It struck a huge blow to hear her say to my face that, in a roundabout way, it was partially my fault for not stopping the anorexia.


Jun. 11th, 2007 12:00 pm
brightlotusmoon: (Default)
On my friends list, a post by [ profile] shadesong moved me to tears, because she said something that could have come from my mouth, my mind myself:

"Just one of the bits of damage the past few years have inflicted on me = I don't know what my body is supposed to look like anymore. I've never been able to judge my body as compared to the bodies of others - the curves I find attractive in other women would, on me, send that voice clear 'round the bend. And I can tell myself "This is idiotic - you find her beautiful, and you are skinnier than her, therefore you are not the baby beluga you think you are." But this is not a rational thing.

I don't recognize myself in the mirror. After years of hollow thin face and razor-slash cheekbones, my cheeks seem full, my face seems amorphous. There are layers of meat on my arms, my legs, my belly. I never really registered myself as being as skinny as I was at my lowest - pictures of me then shock me. That's not what I looked like in my head. But neither is this. So I can't really objectively tell if I'm okay."




Jun. 10th, 2006 09:19 pm
brightlotusmoon: (Default)
Adam just made a truly mouth-watering concoction: A lightly toasted whole wheat sandwich consisting of bacon with tomato that has been marinated in water, balsamic vinegar, red wine vinegar, and Supreme Salad dressing. Basically bruschetta with bacon on toast. He gave me half.

I have been having trouble with eating lately. I will eat, regardless of how much or how little, and worry. If I am reclining on the couch, I will be completely relaxed, and I will start poking and grabbing at the flesh on my abdomen, which I know will stretch taught and flat if I stand. And yet I just cannot ignore hunger pangs like I used to. The old tricks won't work. I could drink a liter of tea and still desire food. I suppose this is my body's (and brain's) way of shaking fingers at me and telling me that I hae come too far to turn back. I can only tone the muscle now, aerobics and pilates; and losing weight would be just counterproductive. Part of me wishes that there were no skinny women on television, that all women were fleshed and curvy and there were no bones. It bothers me, a tiny part of me, to know that other women my height are ten, fifteen pounds thinner, and seem fine.
The rest of me snaps, "Oh, get the fuck over it and keep eating."

My husband worships my body. My friends adore my body.

Something interesting that still has not left my mind: Last weekend, Adam and I visited Charlotte and Billy, and stayed up late on Saturday, talking. Charlotte has lost weight again; her anorexia is still not as under control as we'd like to think. She needs fifteen or twenty more pounds and she knows this. When I became insecure about my curves, she made me take off my pants so she could look at my ass and prove that there was no actual cellulite. She kept looking at me for a while as if she wanted to say something. And then, finally, she did. At one point during the conversation, she turned to me with a pleading and panicked look in her eyes. She said, "I know you haven't been eating much lately. I'm worried. You can't lose weight again. I need you. You are my inspiration. You're the reason I want to gain weight and look good. If you get sick again I don't know what I'd do. I love you so much." It floored me, this intense confession. And it has inspired me to keep going, knowing that she looks up to me like this. I want to heal.
As if confirming all this, throughout the course of the night, Adam kept staring at me as though he wanted to devour me, like a most decadent dessert.

I want to feel the way they see me. I do, every so often. Getting better, more often.

My sciatica is killing me right now. I wish I were numb.


brightlotusmoon: (Default)

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