brightlotusmoon: (Snow White Blood Red Light Pale)
So. Multiple friends have suggested I write something like this, because no matter how often I say it, I still get invalidated, scolded, told I shouldn't be doing it because it upsets people. And of course, it would be talking about my life, my disabilities, my personal health, in public forums.

To paraprhase a friend: "...taking someone's lived experiences as they apply to their particular disability and how it expresses itself, and saying that they can't talk about that because it will make other people feel bad, is not okay and it invalidates them to varying degrees. Different disabilities affect different people in different ways."

In other words, sometimes comparing things is bad. We are human. Humans all have problems. Each human has their own set of problems. Some humans want to talk about their personal problems in ways that other humans find annoying, upsetting, unsettling - but other humans find those ways comforting, eye-opening, powerful.

I don't know how else to say it, so I'll be blunt, and this time I am not going to pull any punches:
Read more... )
brightlotusmoon: (Asha)
So, in my cerebral palsy support group on Facebook, someone posted asking about all the other conditions we all have that may and may not be related to cerebral palsy. I commented quickly in a very instinctual pattern, then realized that a part of my brain must have been saving it up in a fantastic pattern. I think this at least two dozen things.

Spastic and ataxic cerebral palsy... plus: epilepsy, autism, fibromyalgia, sciatica, asthma, hypersensitivity, sensory processing disorder, migraine disorder, anxiety, unipolar depression, chondromalacia patella, disorded spatial perception problems and depth perception problems, TMJ, lordosis, dyscalculia, OCD, ADHD-inattentive, anorexia recovery, light bladder leakage, seasonal allergies, sleep disorders, extreme myopia, chronic lumber back pain, eczema, panic attacks, generalized joint pain, generalized nerve pain.

They look like nothing but words. Words and labels. But they are identity bits. They are definition bits. I am not like people who are so adamant about not letting disabilities define them. Or take over their lives. Or whatever the latest platitude is. I know damn fucking well that chronic medical conditions are not the big thing in my life, not the main definition, not a thing I allow to control me. In fact, it is insulting to know that people assume that. However, look at that bunch of words. That bunch of words means things, to me and all my doctors and all my specialists and all my therapists and all my -path doctors. When I went in for physical therapy earlier this week, I listed every single thing because the guy asked me to, because neurology and psychiatry is interconnected with physiology in so many ways. People who are not involved with medical science or medicine in general love to assume I am lazy, that all I think about is being "sick" and that all I want to talk about is my medical health. I wish I were as telepathic and clairvoyant as they are. And also, fuck them. See, in cerebral palsy, spastic hypertonia alone can cause a disabled body to automatically, instinctively expend three to four times more energy than a regular normal able body. And see, in fibromyalgia, chronic muscle fatigue alone can cause a disabled body to automatically, instinctively expend five to six times more energy than a regular normal able body. I am terrible at math, but at least I can figure out the mechanics of physical energy output during basic everyday tasks, like walking. I could legitimately literally say that it is not my fault that I get extremely exhausted, fiercely fatigued very quickly during any task. I could say that and it would be absolute truth. But to most able-bodied folks, it would be another excuse.
I'm just writing this to tell them to fuck off. It isn't easy to "just ignore those idiots" as supportive folks like to say. Words wear you down, like storms against stone. But the more I remind myself that those detractors can fuck off, the better I feel about my life.
brightlotusmoon: (Asha)
Seriously, you guys, I don't even know.

Last night, I had what appeared to be a plummeting crash of blood pressure and blood sugar, leading to violent vertigo with one-time vomiting, clamminess, cold sweats, passing out, horrible weakness and fatigue. Luckily, our summer housemate, my cerebral palsy group friend Kyle, was there to help out, and my husband arrived home soon after.
All day today, I rested. I slept into the afternoon; I ate small balanced meals; I slowly walked around the neighborhood.
Nope.
Still feeling it.
With Adam being home today and tomorrow, I think my mind feels free to express full-out WHARGARBL in the form of, like, shutting me down, I have no idea. I feel weak, light-headed, foggy, aphasic, exhausted, up and down: It is like epilepsy, migraine disorder, anorexia, fibromyalgia, anxiety disorder, chronic stress disorder, hypertonia, and sensory processing disorder, all at once, all piling up in one Hulk Smash. Even as I type this, my upper body is swaying. I'm taking bites of the baked brie in croissant dough, drinking whole milk, rubbing an ice pack on my neck, breathing deeply and calmly.
This is so, so, so strange.

Like, literally what is this I can't even.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
Copied from Facebook, because it should be put here.
*
My neurologist is hilarious and awesome. And she thinks the same of me. We're gonna schedule a brain scan. And we traded quips and jokes about why the he'll I didn't get diagnosed autistic until last year. And she agreed that I am badly stressed and depressed for no reason and she desperately wants to help, and she wants to increase the Zoloft a bit to see what happens, and she's very pleased that the passion flower is helping me sleep, and she cares so much it makes me cry. She hugged me when we were done.
I told her that I feel like I'm on another planet with super caring doctors who really help, and she looked so empathetic and almost upset about the lack of such support. I heart you, Chang Ching Debbie Lin, super neurologist and friend to patients.
*
And here I thought they would take more blood. I must remember that the good veins are in my right arm. I'm impressed I was able to watch both arms being poked. That was a big needle.
*
And of course I tripped and fell flat on my knees and shins while walking through the grass. As I was using the cane to slowly get up, I heard a woman call out, and then a hand was on my arm. She asked me if I was okay, and asked if I was going to the bus stop across the street. When I said yes, she held my left arm and helped me the whole way and stayed until we were sure I was okay. Then she went back across. Funny thing was that we were right next to both the hospital and my primary physician office.
I'm home now, and both my legs are bruised, and I'm all stiff and annoyed. But the look of concern on the woman's face made me grateful that people care enough...
*

Indeed, it's never big things, never major or massive emergencies. It is just several little things, one after another or at the same time, building up day after day, never stopping.

Dr Lin Super Neurologist has written "chronic stress disorder" on the list (right next to intractable epilepsy, insomnia, cerebral palsy spastic ataxic, and myalgia as doctor-approved medical issues on that lab test print-out I took to the lab that took two vials of blood). When she had touched my shoulders, she had exclaimed, "Ohh, you're stressed. These muscles are far too tight, even for the cerebral palsy." We joked back and forth - I said, "You know those internet memes that tell you to think positive thoughts to eliminate stress? I hate those." And she said, "It's exactly like saying that the best way to treat a stress-related disease is to get rid of stress. Helpful, isn't it?" - and she was genuinely worried.
She gave me those physical tests where I had to push against her hands with my hands and legs, and my left side barely responded, and I watched her mouth turn down and her eyes fill with sympathy. When I said that my medications were working very well for what they had to work with, she was almost gleefully relieved. She does want me to see a psychiatrist, and she thinks increasing the Zoloft may help mitigate some stress with its ability to handle more than just depression and anxiety. She was happy to see me able to genuinely express my sense of humor, and she liked that I called my depression episodes "hollows". I truly feel better for having seen her and for scheduling the six-month follow-up. Brain scan ahoy.

I know so many people with intense diseases, disorders that must be monitored and treated with porcelain delicateness, with multiple medical conditions that leave doctors stunned and astounded that these patients are still alive. This is why I don't like to compare. This is why I hate playing games, even though sometimes I find myself pain-bragging without realizing. My small, numerous, chronic daily medical issues are nothing next to something as huge as, say, cancer or MS. But they are annoying.

These varied, various, multiple little pains and problems are indeed growing and they are quietly and slowly debilitating no matter how many Happy Thoughts tm I throw at them, and they will be with me for the rest of my life, and I will work with them and treat them as best as I possibly can, and I am doing my best to turn away from insistent voices that cry about magical panacea drugs/herbs/exercises and seek out whatever magic works for me, magic or not. And all I want to do is reach out and hold the hands of those who are being struck down with health problems no matter how many times they get back up, who get back up no matter how many times they are struck down, who just want to rest.
I just want to rest.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
So... there is that whole thing about "I am having a medical depression episode, I am medically anxious, I am in severe a chronic pain fibromyalgia flare that rates an 8 on Allie Brosh's pain scale, my spasticity is out of control, my hypertonia along with ataxia is interfering with my ability to balance, I'm very dizzy, I'm in a mental fog, I keep thinking of how Rose-kitten died and I start getting choked up, my joints ache and throb so much that I want to become a cyborg right now..."

And I got back from a shopping trip to Barnes&Noble and Target. And Adam picked out a beautiful autumn/spring coat with purple/rose/yellow/brown patterns I never would have considered and it was gorgeous on me and on massive clearance, and Adam himself found a perfect back-up backpack on massive clearance. And I found several new books I've wanted to read including a new Amber Benson book and a new supernatural suburban fantasy series, plus a Pinkie Pie doll from the company Aurora, the same kind that sells Fluttershy on Amazon, with soft simple fabric for hair that was perfect for cats to play with.

And I spoke cheerfully and joyfully with strangers, smiling so much that my disguise and my mask strengthened, and I knew that I could make it through as long as the medications held up, the Soma and Klonopin and Ultram and Vinpocetine and Picamilon and MSM and Vitamin D and Guarana and coffee. People asked me where I got my gold-colored cane and why I had it... and were honestly intrigued to ask about the cerebral palsy, no condescending remarks, no inspiration porn, just requests for details and honest educated understanding. And I was happy to educate, explain, enlighten, and watch their faces light up as they thanked me sincerely and walked off with more information, and that is all I want from things like that.

And the medicines did as promised, and I came home and fell down by choice, and as a wise, wise woman with a PhD told me, It Is Okay To Not Be Okay.

I am not okay. And that is okay. Eventually, I will be okay.

Some quotes I would like to share on trauma and living with illness, disability, life after trauma:

1. "Healing is seasonal, not linear.
It is true that healing happens with time. But in the recovery wilderness, emotional healing looks less like a line and more like a wobbly figure-8. It’s perfectly common to get stuck in one stage for months, only to jump to another end entirely … only to find yourself back in the same old mud again next year.
Recovery lasts a long, long time. Expect seasons."

2. "Whatever doesn’t kill you …
In 2011, after a publically humiliating year, comedian Conan O’Brien gave students at Dartmouth College the following warning:
"Nietzsche famously said, 'Whatever doesn’t kill you makes you stronger.' … What he failed to stress is that it almost kills you.”
Odd things show up after a serious loss and creep into every corner of life: insatiable anxiety in places that used to bring you joy, detachment or frustration towards your closest companions, a deep distrust of love or presence or vulnerability.
There will be days when you feel like a quivering, cowardly shell of yourself, when despair yawns as a terrible chasm, when fear paralyzes any chance for pleasure. This is just a fight that has to be won, over and over and over again.
… Doesn’t kill you.
Living through trauma may teach you resilience. It may help sustain you and others in times of crisis down the road. It may prompt humility. It may make for deeper seasons of joy. It may even make you stronger.
It also may not.
In the end, the hope of life after trauma is simply that you have life after trauma. The days, in their weird and varied richness, go on. So will you."

I chose these quotes because I have heard, over and over and over, "Oh, just get over it. Slap a bandage on it and walk it off. Are you still going on about that thing? It was years ago! Aren't you on medication and in therapy? Shouldn't you be past all that by now? Stop thinking about it so much; you're just making it worse. You're creating negativity in your own spiritual space. Negative emotions and negative thinking will destroy your immune system, you know. Stop stressing so much. I give up! You're hopeless! I can't even talk to you! You're a broken record! You're just making it worse. Why won't you listen to me? Every time you talk about getting worse, your mind and your body really believe it. Get over it! Think positively! Change your attitude! Do what I did! I quit thinking so much about the pain and trauma, and in a few months I was cured. I really think you need more positive thinking. You're bringing yourself down."

And the reason I have merely smiled, nodded, and replied, over and over, "Thank you; I shall consider that!" is because those people don't want to listen anymore, they just want me to stop talking, even though I just want to confide. And so I stopped confiding in them. It was a drain on my energy and time and it just made them irritated at me.

The point is that there is no straight line when it comes to trauma, pain, illness, damage, and negative life events. Some people will never seek treatment, and will continue to live in a post-traumatic stress cycle complete with angry outbursts, emotional breakdowns, and paranoia over things such as medical treatments. There is nothing I can do but be there, even if it is just as a voice to soothe, a hand to hold, a joke to tell, a distraction to offer.

But for me, everything is a cycle. I will never be free. I acknowledge that my entire life, literally, is, was, and will be about recovering from trauma. I have tools to work with. I have doctors who understand me. I have taken all my medical problems on with my own personal arsenal, and I know better than any of the people who dislike my methods how to work with, on, and despite myself. I have my girls, my spirit guardians, my coping mechanisms with human faces, the parts of my brain formed from fictional characters that allow me to handle different parts of my trauma. And so I keep going. Trauma is a part of my life. And that is okay.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
Thanks to another trip to Michael's craft store, I have a new set of Faber-Castle Pitt artist pens below Fine, and Calliope has a Beanie Boo dolphin to cuddle, which she has been doing. I have an owl, which seems to work well as a knee pillow.

We went to the nearby Whole Foods as well, where I found my loved chocolate hemp milk, Guayaki Yerba Mate energy shots in Lime Tangerine, Orgain Chocolate Nutrient Shakes, a bottle of Acai+10 Superblend with Seabuckthorn and Mangosteen, and the rare Badger Balm large Lime lip balm. Adam picked up some fabulous cheeses, and a Coffeeholic Cream Cake for me.

Mom called to chat about an NPR medical science podcast about migraines and the placebo effect, and I revealed that forty percent of my smaller headaches can be slightly reduced by intense meditation after taking certain supplement pills. Good talk. Doesn't work all the time, doesn't work for the more intense symptoms, but I know how powerful placebo effects can be for mild and minor pains sometimes.

Luna and Calliope seem to be starting a... well, a tolerance, on Luna's side. As long as I give Luna attention first, she is nice to Calliope during cooperative play, feeding, brushing, etc. As long as Luna Moon knows she is still the precious queen and Calliope Io is submissive, there is peace. And Jupiter has been gently playing with Calliope, with the occasional soft bap on the head. I am pleased overall.

So, while at Whole Foods, I was limping down an aisle with my blue aluminum cane, right behind a tall man who had the same cane, in sparkly black, and we smiled at each other. "So, how are you?" he asked. I said, "Oh, well, the back pain and sciatica are acting up. How about you?" "Yeah, I'm going to need hip replacement and knee replacement soon," he said. "Oh, ouch," I winced. "I can't imagine. I mean, I'm 34, I was born with cerebral palsy, I'm still learning how to use this," holding up my cane. He nodded. "Yeah, my whole left side has been crazy for years." "Oh, mine too! I have spastic hemiplega on the left! The chronic pain has been getting worse for a long time, but I don't need surgery. Yet!" We grinned at each other. He looked around forty or so and over six feet. I could see right away that his joints were bothering him. "Well," he said, "You look absolutely lovely!" I smiled widely and said, "Thank you! You too!" He grinned back and thanked me, then said, "I hope the pain reduces as much as it can." And I said, "Same for you. Good luck with the surgeries." We said our goodbyes and hobbled off. It was as though we had been friends who hadn't seen each other in a while, commiserating in that cripple language that stays away from "Feel better" and steers toward "I hope your symptoms ease up" which, well, we all understand in the chronic pain community.

And that got me thinking. People tell me "You look beautiful/lovely/great" and of course the silent "even though you're in pain" follow-up. And I actually honestly don't mind that at all. It isn't an insult to me. I know they're usually talking about my chronic pain specifically, not my disabilities as a whole. It's an unspoken thing - "You're chipper and glowing and not letting the pain show, rock on with your badass self." I know that so many cripples would see it as a back-handed compliment and insult, because it totally can be. But for me... I guess it lifts my spirits, especially and specifically when a fellow cripple says it and even able-bodied people who may have invisible illnesses. It is something I need to hear from other disabled folks, because even when I think I look hideous and shitty, to hear someone tell me I look great despite my pain makes me happy, which in turn makes me feel psychologically and psychically better, which helps me try to combat the symptoms, etcetera.

So, my fellow chronically ill and disabled folks, how do you react to such a comment? Is it an insult or backhand compliment for you? Is it a lovely compliment? Do you view it differently when it is said by other chronically sick and disabled people as opposed to able-bodied people?
brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
Because I'm always the fucked up, mentally bizarre, clumsy, twitchy screwy fool who never gets it right, and even when I try to make it better I do such a poor job it needs to be fixed again and again. Some people call it cute and endearing, some people call it stupid self absorbed insanity. I keep trying. I don't even know. I'm tired of people telling me what I should do just because they want me to. Advice and suggestions are awesome. Pushy preachy sanctimony is awful. And even if I don't do it the way people want me to, at least I'm doing it the best ways I know how.

My best beloved cat is ashes in a box because I waited too long; my floors are never clean enough; I watch the same television shows and movies and read the same books over and over for pure comfort and joy; my memory is disintegrating and the only reason I remember anything specific is because I cheat; I want my friends to be okay with each other; I want to talk about things that confuse and fascinate me which include my disabilities; I collect current My Little Pony toys; I just want people to realize that my autism has a name and they can use it without assuming I'm begging for attention, same thing with my aging cerebral palsy and fibromyalgia; I want people to stop insisting I do yoga and to stop insisting I quit eating wheat or dairy when I don't need to, I can't go vegan, I hate tofu and my body can't handle it, I can exercise all on my own;my drugs, supplements, and therapy sessions are working exactly as well as they should be and I twitch when any of them are attacked by people who don't understand; sometimes I actually do physically feel like an old woman and it is absolutely not ever because I am somehow conjuring it or desiring with magical thinking like in that book about law of attraction with pure belief, and if someone really thinks that kind of awful thing about me, then they seriously need to realize that I do not think like them and never will, and they cannot change that.
I am just me, and as I grow and change it will be me, myself, with bits and pieces of suggestions that I will keep and discard as I grow.

I have no fucking clue what made me write this out. Frustration, upset, irritation.
Feel free to pick it apart or ignore it. Just don't trash my medications or doctors, because in that aspect I am doing just fine. Just... this isn't even "vague posting" or "cryptic posting"... I just needed to release something. Social media like this may not be the best place, but by gods, I have so many people on my feed and friend list who understand and are in a similar place. This is for them.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
Yeah. The snow and snain and slush was all worth it. I got to the CVS pharmacy and back by bus without incident. Plus, a free battery operated shaver thanks to CVS Reward Dollars and coupons (I may never need to balance painfully on one-legged in the shower again).
Ah, snow, you've arrived. This part is cool with me. You are soft and powdery and easy to shovel. No ice just yet. You're barely a few inches. I can hobble and wobble and limp and stagger easily.
You see, snow, I don't actually hate you. I only hate your frozen ice parts. The part that really hurts when I slip and crash. See, at least right now you are still powdery and cushiony enough to help me land softly.
I don't hate snow... we just don't get along.
Now I must decide if I want to take the bus to the pharmacy now or tomorrow. I don't know if it matters anymore. These particular refills can wait a couple of days.
Also, whoever invented those magic gloves that let you use your smartphone must have known about Raynauds Disease.

I totally went out to the pharmacy. It started sleeting. A guy asked me if I needed a ride home. He had seen my cane.
Yeah. The snow and snain and slush was all worth it. I got to the CVS pharmacy and back by bus without incident. Plus, a 'free' battery operated shaver thanks to CVS Reward Dollars and coupons (I may never need to balance painfully on one-legged in the shower again).
I'm learning how to use the cane to help me march, scrape, and also test for icy spots. I think the only actually good thing for me is that cold weather helps my asthma issues ease up. Part of me really wants a quad cane for more properly balanced stomping through snow.

To quote Scottish singer Susan Boyle regarding her official autism diagnosis: "Now I have a clearer understanding of what's wrong and I feel relieved and a bit more relaxed about myself."
-Also: why I won't stop talking activistly about it and why I embrace names and labels, but also why I will stay silent at parties, since I seem to be a talking disaster.
Time and place. Time and place. Just because medical science words are a ASD special interest for me doesn't mean I should, well, you know the rest.
(To certain people:
I'm not like you. I embrace diagnostic labels. Names have power. I know what to do with a named thing. You truly feel I must be giving up and in. I truly feel you must not know me well now that I am changing again. Always changing in tiny ways no matter how deeply I stay predictable and ever the same. So I have decided to personally not tell you about all the new details my changed self parts. You don't need to know and I don't need to be smacked down for speaking.
Facebook and LiveJournal are places to chat with like-minded people who will give me stories. You don't have to listen. It's okay. It's just random life.)

Also. Jupiter has been randomly lying on the bedroom floor on Adam's side of the bed, forlornly, so I grabbed a couple of Adam's tee shirts and draped one over his pillow and one on the bed so Jupiter could be surrounded by Daddy's scent, and so I could wrap him in a shirt and snuggle him if needed. He is very emotionally needy and co-dependent, far more than Rose who literally begs for love, so any chance to make the boycat happy and not depressed is a major goal. He's the kind of cat who will gently flop himself onto your pelvis and torso for hours just because you're on the couch. He always seems so anxious. He just wants to know if you will love him or feed him and he'll miss you when you leave. He meyowls up from the bottom of the stairs because he has a toy, he wants to find you, and he knows how great the acoustics are. He's harmless and wonderful, and very very attached - I cannot bear to think of what will happen to him if something happens to us. Poor sweet puppycat.

Speaking of scent, Adam got me a bottle of perfume during his Las Vegas job trip a couple of months ago - Nude by Rihanna ("Fruity aromas of guava, mandarin and pear are located at the opening of the composition. The heart is blended out of white flowers: gardenia petals, velvety Sambac jasmine and creamy orange blossom. The base consists of sandalwood, vanilla orchid and "second skin" musk."). We both love it on me. Sweet and soft and floral and deep. Now I really want Killer Queen by Katy Perry because it is a fruit and flower explosion ("Top notes include wild berries, dark plum and bergamot accords. The main note of the heart is velvety red flower, Celosia, but there are also Sambac jasmine and rainbow plumeria. The base contains cashmere, patchouli and liquid praline"). Oh, indeed.
My personal signature scent, created via Etsy, called Moonlight Witch, consists of real pure extracts Amber, Blue Lotus, Dragon's Blood, Coffee, Chocolate, Green Tea, Coconut, Frankincense, Myrrh, Blood Orange... but I do love exploring various notes and scents when I can.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch)
"Sometimes the only way I know how to work through something is by writing..."
Hi.

"Now I know that the number one rule to being cool is to seem unfazed, to never admit that anything scares you or impresses you or excites you. Somebody once told me it's like walking through life like this. You protect yourself from all the unexpected miseries or hurt that might show up. But I try to walk through life like this. And yes, that means catching all of those miseries and hurt, but it also means that when beautiful, amazing things just fall out of the sky, I'm ready to catch them. "

I need this. I've spent my entire life catching all of those hurts, and sometimes those hurts are beautiful and amazing - because they live inside of me. Even the painful parts. Even the Monsters. I don't always declare war on the symptoms, I often imagine myself using psychological coping mechanisms, transporting my quiet self to a Zen garden with cats and sunlight and wildflowers, as the warrior parts of my brain battle those Pain Monsters with spears and war cries. It is a mind over matter dance that does not erode the symptoms, but helps me work with and deal with them. I apply creative writing to cope and to run to other worlds in my mind.

It is seen as Positive Thinking. But I tend to flinch at that term, because it is usually followed up with a sunshine up the ass platitude. I do apply a method of positive thinking to my conditions, disorders, and disabilities. But it is my own personal method, and whenever someone tries to insist that I use a different method, I naturally stand firm and stare them down. This is why I am happy that all of my doctors, specialists, and therapists are extremely willing to help me achieve my own positive thinking, because it is my own, and I know exactly what I want from it.
Unfortunately, it also makes me extremely vulnerable to criticism. I am probably Doing It Wrong. I am probably Wanting To Be Chronically Ill All The Time. I am probably Magically Convincing Myself That I Am Getting Worse. I Obviously Am Not Thinking Positively Enough - because my biggest coping mechanism is to write it down, and to share my newest findings with people I love and with people who understand my situation. At least, those are my assumptions. I made a few poor assumptions and lost a few acquaintances. But I moved on. Now, I am still writing, still speaking out. Now, I am determined to hold on to my personal method of positive thinking no matter who tries to change that method.

That is why I love this message from Sarah Kay. No one else can work inside my mind like I can. Each of us has the power to think positively in a way that works for us and us alone.

The next time somebody tells you that you need to stop doing it This way and start doing it That way, think long and hard about it before you even reply. Some things are just not worth debating. Sometimes all you can do is smile and nod and say "Thank you for the advice" - and move on. It is your mind, after all.

http://dotsub.com/view/e8f7d701-e410-464d-9051-eeae8a1ddd44/viewTranscript/eng

http://www.upworthy.com/watch-the-ted-talk-that-inspired-two-standing-ovations?g=2

I will probably listen to this video enough to memorize or recite most of it, and my poor memory will do its best to hold it close.

Lights.

Jun. 8th, 2013 10:03 pm
brightlotusmoon: (Snow White Blood Red Light Pale)
The thing about brains is... brains are so complicated. Brains are so complex. Brains need outlets, too. Words are good enough for my brain. I just want to feel safe when I say words out loud. All I've wanted to do was help people. To say, in public, loudly, "You have someone who will listen. You have someone who understands. You have someone who knows what it means. You have someone who will hold you through the worst of the darkness. You have someone who will always shine brighter than any light." Ever since I was a teenager, I was told that I radiated a pure sort of light that drew other minds close. And every time someone who has never seen that light tells me that I'm causing upset or wrongness, that light falters, because how could someone slap me across the face just because I want to speak out through the darkness? I will never stop speaking out through the darkness. I don't care what it costs anymore. I will talk about my brain and its ultimate complications and complexities and sicknesses and handicaps, and somewhere, someone will always be listening. And they will talk about their brains, and we will share our stories, because that is how stories begin.
"Once upon a time, there was a warrior princess born with invisible armor to battle all the damage inside her that would follow her for the rest of her life. For a long long time, there was nobody she could talk to who truly understood. And then, suddenly, there were dozens of people who could understand. And the warrior made it a mission to talk to them all and keep talking. She kept talking even as others misunderstood her, scorned her, and scolded her, since they didn't realize that what she was doing was baring her life wide open, so anyone drawn to her light could share their lives too. She was told, 'Stop putting yourself out there. Stop talking so much about what's wrong with you. Stop focusing on the negative.' And she looked at them, finally, and said, 'No.' Because there was nothing negative. There was no wrongness. There was only her life. And her life was only positive and right. There was laughter, and amusement, and silly things, because even as the pain overwhelmed her, she would keep going, keep laughing. She told stories to those who wanted to listen. She helped many people learn about themselves. She became a teacher, an advocate, a true light in the darkness. She became strong and brave because she had to. And she will have stories to tell for the rest of her life."

bluedarklotus

dragongirlsky

auroradragon

I admit, I got a little choked up while writing this. Maybe I do feel much more defensive and upset and naked to criticism than I thought. I'm really, really trying to work on letting all that go. It certainly doesn't help my mental health.
brightlotusmoon: (Pixie Model 2)

I am about to really really open up here.
Please don't scold me. Please don't smack me. Please don't get upset. Maybe I have said these things before and I forgot.
Please... just listen.

Dear brain science people:
 Does anyone know about temporal lobe epilepsy paired with any comorbid mood disorders, psychiatric disorders, neurological, neurobiological, or neurochemical disorders? I'm not just talking about depression and anxiety. I'm talking about disorders like dysthymia and even cyclothymia.
There are times when psychic talons are grabbing my brain and squeezing and shaking and something deep inside is insisting that nothing I do is worth anything. Now, that may just be major depressive disorder talking, honestly. But right now, as I launch myself into deep medical science studies and talk to doctor after doctor, I do wonder if the Things inside my brain are deeper and darker than I think. It is getting difficult to make myself fully happy.
The people around me, online and in person, who can really make me laugh and be joyful beyond joy... they are so few, and I do not know know to make more friends in person who can do the same. I need my nerds and geeks and artists and writers and and scientists and bookworms and polymaths and comedians, and I feel far too shy and anxious to reach out. The worst they can say is "No, I am busy" and that is fine. That is always completely fine and understood and it is okay.
Sometimes I want to cry and I have no idea what to say. All I can do is write back and forth, like a pen pal. Maybe that is the best way to do this. Just write. So they cannot see and hear me while I cry and while my words become scrambled and tumbled. I'm sorry. I'm so sorry. What should I do? What should I say?
I want someone to understand why I still want to be Jean Grey when I grow up, even though she always dies.
To repeat: I have spoken to doctors and therapists at length. I am not at liberty to divulge anything right now. Sorry.

Edit:
You know...
Maybe this is another major depressive episode with anxiety. I mean, I did have several seizures, and PMS, and constant fibromyalgia attacks, and my mother keeps pushing me about health issues I'm already working on, and the news is always ridiculous and depressing, yada yada yada...

brightlotusmoon: (Default)
Well, shit.
I feel another depression episode starting to happen.
Hate this. Hate hate hate.
Then again, I am a week away from my menses. But I can't blame that entirely.
Stupid self. Stupid body. Stupid brain. Fuck you, every part of me.
I want to cry. But the Soma and Flexeril has made me too relaxed. Pain is eased, anxiety is eased.
But you know when you can feel that heavy darkness creeping in, jaws open, talons clicking, eyes glowing. I don't want to eat. I don't want anything. Thinking of sleep makes me shiver, but I don't want to be awake,
I have an appointment with my pain specialist tomorrow, or rather one of the main nurses, and I will mention this.
Loved ones keep asking about the novel and the short stories. When will I finish writing anything? Will I submit anything else that might not get rejected? I cannot think about that without crying. I wrote pages and pages of something, and it might be a story, it might be a chapter. I will edit it later this week.
My cats adore me. My husband adores me. He will be home from out of state jobs tomorrow, or the day after, or who knows. It's always a surprise. It's hours and it's money. Bills will be paid. We miss each other, but we've been doing this for over twelve years, it's routine.
I need to meditate. My head feels so dark. Time for Klonopin and deep breathing exercises.
Fibromyalgia and spastic hypertonia are ruining me. I feel punched and stabbed in the gut by fire and stone and electricity. I can't cry.
I will hug my cats and my pillow pets, and I will brush my hair until my scalp releases endorphins, and I will read books, and I know I am loved.
My muscles are so stiff and sore and it is so hard to speak with the mild dysphasia, so I write and write.
I know this will fade soon, this will end. I will make it better. I need to care about things, I need to want to do things. I need to remember I am a beautiful soul. I am writing this now, so I can look back and remember, before a seizure strikes and I think I am falling all the way down, dirt in my mouth and glass in my skin. I will medicate. I will meditate. I will supplement. I will do everything I can. My brain will gradually soothe itself. I will help it. I have to. Poor sick brain, poor demolished neurons, poor damaged body, and it could be worse, and it could be so much worse, and I know that forever. So I push on and on, and I do everything I can to love, love, love.
Just love.

I am sorry about this. I swear I will blog about happy shiny things as soon as I can.

Trying

Mar. 26th, 2010 09:16 pm
brightlotusmoon: (Default)
I've accepted that I'll probably be in pain for the rest of my life, pain in some form of another. I'm not going to deny, ignore, or sugarcoat it. I won't put on a happy face. It's just what my life is and will be. People can tell me over and over, "Just think past it, just push through it, don't let it control you, don't let it become your life." That is fine. It is wonderful advice. Sometimes I don't feel like taking that advice, and that's fine, too.
I think that people with chronic pain disorders, chronic illnesses, neurological disorders, and brain illnesses need to understand that often it really is okay to cry and yell and scream and sob. Let it out. Get it out. But live life, too. We live with our pain, but we are not our pain and our pain is not us. Find ways to live. Try.
Sometimes I want to fall over and stay that way. I don't, because I don't know how to stay down. Not even when I'm forced. I try. I fail a lot. But I keep trying.
I don't know what else to say.
brightlotusmoon: (Default)
I keep fighting off simple partial seizures. Sensory, psychic, autonomic, motor, the whole package. This is not as alarming as it could be, since it's the week before my menses. However, it is exhausting. I have work to do and thoughts to think and life to live and all those things.
It makes the dreamy, flitting ADD distractions that much more difficult to control. I am a daydreamer by nature even without ADD. Usually my brain is better, but I am tired.
I think I am coming down with a cold, and the fibro is flaring slightly, possible anticipatory predator stalking my musculoskeletal and central nervous systems. Speak of the devil; the cerebral palsy has caused the muscles and tendons in my left leg to clench pull too tight.
Keeping in tune with the CP, the sensory integration disorder has been messing more than usual with my senses of touch, taste, smell, and hearing. That pisses me off. I feel bitchy and whiny about everything.
The asthma has been acting up slightly, too. I haven't needed the rescue inhaler much in general, so I've been doing breathing exercises and taking cayenne extract and cordyceps and cat's claw and drinking peppermint tea and doing everything I can to not use the inhaler unless I actually need it. I keep an inhaler in my purse, one next to my bed, and one in the den.
Amazingly enough, the sciatica and lordosis have been quiet. Cannot say that for the migraines.

Yes, I'm falling apart. No, I'm not going to stand up and smile brightly and be cheerful. I want to collapse and scream and sob and howl and curse. I will do that for a while and I will vent, and then I will stand up and smile and be cheerful.

I'm tired. I'm just... TIRED. I don't know what not being tired is like anymore, not really, not completely.

Oh, hey... purring cats. *tired, happy smile*
brightlotusmoon: (Default)
I've been clenching my teeth so much over a ridiculously idiotic comment so much that my head hurts now.
On a forum, I explained to a curious person about cerebral palsy and sensory integration dysfunction, which often go hand in hand. Someone butted in with the genius remark, "There's no such thing as sensory integration dysfunction; you're just making it up to feel special. I bet you think it's fun. Don't be stupid."
I will never, ever understand this mentality.

My neurologist recently asked me to write down every separate medical condition I was diagnosed with throughout my life. Not symptoms, but actual syndromes and disorders. I decided to copy the list here, just to have it on hand. Most of them relate to each other. It's like a big happy Gordian knot, or a mix of triquetras and eternity knots. *looks at wedding ring* Yeah, that.
(Buddy, do any of these look like they'd seem special or fun?)

Cerebral palsy (spastic-ataxic hemiplegia)
Fibromyalgia
Temporal Lobe Epilepsy
Asthma
Raynaud's Disease (primary)
Sensory Integration Dysfunction
Attention Deficit Disorder (non-hyperactive)
Sciatica
Lordosis
Migraines
Non-Allergic Rhinitis (mainly gustatory)
Anorexia Nervosa (recovering)
Chondromalacia Patella
Joint Pain (overall)

Hey, it's Friday.
Hey, I can sleep in tomorrow morning.
Hey, why can't I get any of the new TMNT episodes on Saturday mornings? Fox is only showing repeats of that irritating Fast Forward season. The new Back To The Sewers season should have started a month ago. Explain, internet.
brightlotusmoon: (Default)
I'm doing that thing with my left arm again.
Sigh.
When you have spastic cerebral palsy, the arm thing is almost guaranteed. Whichever arm is affected will draw up against the body, the wrist will bend, the fingers will curl, the hand will become tense and claw-like. The entire limb may seem limp and useless, but it is actually suffering little muscle spasms that cause it to tense up, to clench, to become painful. You really cannot control it, unless you really really concentrate.
Sometimes I am too tired to concentrate. Sometimes the fibromyalgia sweeps over me like a tsunami crushing an entire city, laying skyscrapers flat, and leaves me utterly drained and I don't care if I walk like a gimp or if people stare. I just want the pain to stop then. Sometimes, after the epilepsy has slammed me with a complex partial seizure and I am left numb and shaking like a shipwrecked sailor tossed onto a deserted island, I don't want to remember to shift my weight to my left foot, I don't want to remember to turn my left foot in so the severe supination won't threaten to throw me off balance and lead to a potential sprain or worse, I don't want to remember to put my left arm down and swing it normally. I don't want to concentrate on keeping my muscles relaxed from the tension of hemiplegic spastic cerebral palsy, because I'm spending all my energy concentrating on keeping my muscles free from the aching burn of fibromyalgia. I'm spending all my energy concentrating on keeping my brain calm from the crackling storms of misfired neurons.
The funny thing about seizures? I am unusually calm after many of them. This has recently been explained in conversation.

Sometimes my brain is so drained, sometimes it screams enough, enough... and I become as calm as still water.

It is something that many are familiar with, no matter the ailment.

You begin to relax, to calm down, to feel tranquil. You are back in the world, you are not injured, you are perfectly safe. It's all okay.
Then, slowly, gradually, eventually, maybe... your muscles begin to relax, to release themselves from the prison of their own agony. We're okay, they think. We have no more reason to spasm, to tense, to clench, to scream.
But of course, it doesn't always work like that. Sometimes it just doesn't end.
And so you lie in bed, drugged with muscle relaxants and pain relievers, curled up under a heating blanket, sipping warm tea, breathing slowly and gently in and out, meditating deeply and powerfully, imagining pure light and pure energy flowing from the top of your head to the bottom of your feet, sweeping away all pain and tension. You stop to touch the meridians, the channels, that are significant to your pain points and tension points. You imagine cool, clear, clean water, cleansing you, soothing you. A gentle, soft sun shines down on you, warming you, and then a sweet, soft moon takes its place, cooling you.
And then you find yourself asleep. And you dream. Sometimes you wake up suddenly, in pain, but manage to fall back asleep every time. When you wake up for real in the morning, you don't feel rested, you feel like you've barely slept, you feel like you've been run over. But it will be okay. You take your supplements and your medications, and you go about your day, and all the while you hold that image in your mind of that pure light and pure energy, that cool clear clean water, that gentle sun, that sweet moon.
Go to sleep. Repeat. Wake up. Repeat. Repeat, repeat.

And this is your life.
But it's okay.
It really, really is.

I'm happy. You know? I'm happy. I have... so much. I am thankful for so much. Great health insurance, awesome doctors, an amazing job with amazing coworkers. A wonderful life. My phenomenal husband, who is one of the greatest men I will ever know and my most powerful strength. My beautiful best friend and heart-sister, who shines brighter than angels against even her own darkness. My fantastic parents, who raised me to understand, respect, compromise with, and fight tooth and nail with my disabilities and disorders. All my friends, who never let me forget who and what I truly am.

I don't feel sorry for myself. There is no pity.

There is only life, light, love, and strength.

Anyway. New episode of "Heroes" tonight. *happy*
brightlotusmoon: (Default)
http://notdoneliving.net/foothold/openletter/
http://notdoneliving.net/foothold/openletter/options.html
http://www.usresolve.org/A-Letter-to-Normals-from-a-Person-With-Chronic-Pain.php

Substitutions for various disorders and symptoms are, naturally, encouraged.

Another statement that hurts is, "You just need to push yourself more, try harder". Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language.

Profile

brightlotusmoon: (Default)
brightlotusmoon

March 2015

S M T W T F S
1234 567
89101112 1314
15161718192021
22232425262728
293031    

Syndicate

RSS Atom

Most Popular Tags

Style Credit

  • Style: Dreamscape for Ciel by nornoriel

Expand Cut Tags

No cut tags
Page generated Jul. 24th, 2017 12:31 pm
Powered by Dreamwidth Studios