brightlotusmoon: (Asha)

I have been snacking on whole fresh mozzarella cheese, salami slices, and roasted almonds, along with apple slice smeared with cashew butter. Good stuff. When Adam comes home from work, we'll eat the eggplant parmigiano that has been soaking for two days.

In the medical science community, there is a slow push to make chronic fatigue syndrome an actual disease as well as fibromyalgia. This may at least help them take us more seriously.
All I know is that Cymbalta is doing lovely things, surprisingly. After adding Rhodiola Rosea and Garcinia Cambogia, which gently boost dopamine and serotonin, I feel better. Still in a depression episode, still having anxiety blackouts and transient global amnesiac episodes. Buuut it's better. It doesn't seem any bettet since it all began in 2011. But I can feel things happening. It's all qualia anyway. All subjective.  I can never tell anyone to be me anyway.

brightlotusmoon: (Asha)
So! I did a thing a while back. I didn't tell anyone. Anyone at all. And now it is time to come clean, because it's been long enough that I think I can finally shoot down the pushers.

I did a second gluten-free trial, lasting just under one month. I spoke to all three doctors and specialists, who were okay with it. Although I shall quote my primary physician, Dr Carolyn, who has treated me since 2003: "I don't see why it's really necessary, though. You've never had gluten sensitivity, let alone celiac. But if it will help you psychologically, then sure. Let me know." And to quote my neurologist, Dr Debbie: "Why are you doing this to convince other people? I mean, I'm genuinely amused. You don't need to cut out gluten for health reasons, anyway." All I could do was shrug and say, "I guess to prove a point to the health-pushers?" She said I had a point, since that was irritating, to be pushed at.

The results were...

Wait for it...

Nothing.
Absolutely nothing.
There was no reduction in chronic pain, fatigue, inflammation, or malaise symptoms of any kind. I did not feel more energized nor clear-headed. My life did not change, not even a flicker.

Now. For the past several weeks, I've been verbally assaulted across the board by people who just want me to feel better - by using blatant, callous emotional manipulation to force me to comply.
The most popular one so far has been "Well, what if you were dying? What if you found out that gluten would kill you and that by going gluten-free you could save your life?" See, okay, that is a fascinating thing right now. That is one of the most manipulative, passive-aggressive, hard-hitting, one-sided forms of coercion ever. The speaker is hoping to catch the listener in a corner, with no choice but to agree. And see, they're correct there. Obviously if I were in such a scenario, of course I would go gluten-free. But the catch is that I am not dying. I am not sick. Thus, no desire nor need to go gluten-free. Not unless that life or death scenario occurs!
Following up that particular attack, we then have this, "Well, then, don't you think going gluten-free would at least reduce symptoms and pain?" Which ties into the first, of course, and is subtle enough to seem harmless and reasonable. And... no. Because gluten causes problems if one is reacting to gluten. Which I wasn't. "But I read this book written by this doctor that said that for everybody, gluten can cause overall body inflammation and pain!" For everybody, really? All seven billion humans, with the exact same medical issue. One would assume the CDC, FDA, and various world governments would be all on top of that like roaches on dog food. Plus, I listened to a conversation said by this doctor, who is personally treating me, that said that I didn't need to restrict my diet like that. But you're right, book-writing doctors would know better.
Now, the big guns. This attack is my favorite, because it strikes right at the heart, it tries to destroy the option of choice: "So, I guess you'd prefer a life of pain over fewer symptoms." It can be said in multiple ways, but the core is always a smug, smarmy, morally superior, I've got you now rhetoric. It's a tough one to counter. If you say yes, you seem as though you just don't ever want to really help yourself after all. If you say no, well, why haven't you taken their advice? You see the attempt at emotional superiority and twisted logic? At this point, you can tell they are grasping at straws. They've seized on an idea, fixated, and found themselves unable to let go. I get that. And they most like don't even realize that what they say to you is painful or upsetting. They only want to help. They care deeply enough. Obviously, when you love someone, you want to see them happy, healthful, pain-free. When they are in chronic pain, when they hurt every day, you hunt frantically for ideas about treatments. Even when they have doctors and treatments, you just want to do something, anything, because you can't stand to just stand by. They're hurting. Why can't you help? You feel helpless.
But emotional manipulation and verbal attack is a very ugly way to go about helping. They are more likely to stop talking to you. In fact, with most of these people, I've started not talking about my symptoms. Which is funny, because these are my support networks. These are support groups, people who are willing to help. Except for the ones who don't know how to help, the ones who don't have chronic illnesses like mine, who can only see the experiences vicariously. Intellectually, they may understand that it is inappropriate to push, but it feels so right emotionally that they can't help it. And I've been there. I've done that.
The problem here is that if people actually cared about your pain, your chronic illness, they wouldn't apply these manipulations; they are generally more concerned with winning you over and being right. Nobody truly means to be an asshole in a situation like this.
However, in the end, that gut-sensation of being right, of knowing what might work, is overwhelming and almost brainwashing. It's almost cult-ish. I'll call then health preachers. This isn't about just gluten-free. This is about every dietary alteration ever suggested. This is about every medical treatment involving home treatments like food and exercise, meditation and yoga, supplements and massage, etcetera. I haven't even gotten to pharmacological medicine and holistic medicine yet. Or the people who deny psychiatric illnesses, who think psychiatry is fraudulent, who believe firmly that clinical depression isn't real and is literally psychological, delusional. Frustrating, isn't it.

So, anyway. My Plan. I went gluten-free for just under a month. I kept notes. I was alone, because Adam was away on business, so I just cooked for myself and didn't touch anything with gluten. I was hungry and bored. I mean, the food was delicious. There was a lot of quinoa and lentils and sprouts and cheese and meats and snow peas and carrots and apples. I ate a lot of steak. But I just felt annoyed.
My doctors were extremely amused and not at all surprised when I told them the results.
Seriously. Three separate doctors. All saying the same thing. I mean, at this point, if I were to tell Dr Carolyn to refer me to a blood test just for the hell of it, she would quirk an eyebrow at me and ask who was giving me the money for the test (I don't know if Medicare covers those), and we would laugh.
But I didn't tell anyone I knew. Not for the whole duration. Here and there, I casually mentioned that I'd done gluten-free trials without any changes, I casually mentioned that I didn't need to cut out gluten and that there were plenty of other ways I was already mitigating symptoms. I stopped updating my support groups. I just said that I was doing well on my medications and therapies, and when the weather got bad I would flare up terribly and kept treating myself. I mean, even if all my symptoms vanished, I would still not be rid of pain, because of the cerebral palsy. Which 1. is never going away and 2. is getting worse as I age, which cannot be stopped or relieved. Which people rarely realize, because nobody thinks about the crip adults.
So, yay, you, my LJ friends, get to hear it first. I went gluten-free and it didn't do shit for me! Yaay, that was pointless! Let's dance!
It was fascinating. During my trial, I was reading entries on my friends list about people cutting out gluten and realizing that their lives were changing for the better, that they were celiac after all, or intolerant, and that going gluten-free made all the difference and they could love food again, woooo! I was so happy for them I almost cried. It was amazing, reading about their joy and euphoria and ecstasy. Food, they cried! Food is wonderful again! And I nodded, and grinned, and focused on myself and how my gluten-free test trial was just like any other day, except boring.
And I put up with preachers, and pushers, and well-meaning manipulations. And I said nothing. It did hurt, being attacked like that. I sobbed and snarled and surrounded myself with friends who knew the powerful irritation of being shoved around by gluten-free pushers. I kept going. I took double the Klonopin. Days and weeks passed. I stopped the trial. I ate grains and wheat again, slowly, lovingly, with savor.

Today, I was recommended a wonderful book called "The Gentle Art Of Verbal Self-Defense" by Suzanne Haden Elgin. I've gotten a sample of a few chapters, and I'm so hooked that I'll be purchasing the updated version as soon as I have money to buy it. I'm lucky that I've been able to recognize Verbal Attack Patterns recently, but the book will teach me to escape as well as use communication to resolve. I need that. I need to learn peaceful communication getting to the root of the problem without hostile interaction and confrontation, without arguing over semantics. I like to hyperbolize. In fact, a handful of friends and I like to snark at, hyperbolize, and satirize the beliefs of health preachers, like those who firmly believe that gluten-free diets could help everyone who doesn't need them, the way that accepting Jesus will get people to Heaven so the preachers can see them after death and hang out with them in a conforming afterlife. See why this may not work? See why this can be more about the preachers than the listeners?
It is nearly impossible to fight a very calm, gentle person. I need to learn that art of fighting with calm. I need to learn to not be enraged and screamingly upset and insulted whenever anyone tries to manipulate my emotions. I need to learn to break my own cycle of verbal hostility, which will help me handle those manipulations disguised as helpfulness.

Other thing I loathe: Being told that having a mild version of a disability doesn't count. I already discussed cerebral palsy and aging with the chronic pain caused by spastic hypertonia. And they don't back off. No matter how many times you patiently explain anything. Now that is where I really, really need to learn gentle verbal self-defense tactics. Because oh my fucking gods I want to punch them full of holes.

Ahh, humanity. Fun!
brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
Stuff I haven't really talked about lately:

1. Crooked Cerebral Palsy Compensated Fake Yoga, aka Modified Zen Meditation Stretching, for ten minutes, because what my body attempts to do is not any kind of traditional yoga, although it is hilarious and laughing at myself is good. (Which is also why I rarely discuss it - half my friends list is full of actual yoga enthusiasts who practice actual modern yoga. And since I don't believe yoga actually truly cures anything, let alone cures me, I stay quiet. It's like medical cannabis. If people would stop saying it's a panacea for every illness ever, I'll talk about it.)

2. Allergies. Soreness. Stiffness. Burninating. Did I say that loudly enough? And, naturally, fibromyalgia means everything GOES TO ELEVEN. And oh, yes, that's a thing. I've started feeling embarrassed about the word Fibromyalgia, since so many people associate it with whining and inability to "slap a band-aid on it and walk it off weakling" so I've started just calling it Myalgia, which is literally what it says on my neurologist's paperwork. Like, when she sent me for bloodwork, the paperwork said that my active illnesses included Intractable Epilepsy; Insomnia Not Otherwise Specified; and Moderate To Severe Myalgia, Connective Tissues. Apparently there are other paperworks that list not only the Cerebral Palsy, but the Periventricular Leukomalacia, the Autism Spectrum Disorder, the ADHD-Inattentive, the Clinical Major Depressive Disorder, the Multiple Anxiety Disorders, the Social Phobia, even the Tokophobia. Plus, there's a note saying that the Myalgia is causing gradual destruction of gray matter, except in medicalese. My neurologist and my pain management doctor are genuinely stunned and impressed that I'm living quite well on the "small doses of drugs that rarely need changing." I've been called Fascinating and Fun To Work With (I make doctor laugh a lot).

3. Dietary Stuff. I have cheerfully denied everyone throwing fad diets at me, even if they feel that those fad diets might actually be real illnesses and food allergies. The only food components that bother me are large amounts of pure soy and kiwi fruit. Plus, I just plain don't like corn or maize. Going gluten-free did nothing, I adore dairy, I crave red meat, and bread is good. And I dislike kale. I love seaweed.

4. Pharmaceutical drugs, dietary supplements holistic treatments. They are all saving my life, and everything is both poison and magic. Shut up.

5. Lifestyles. I like my solitude. After watching MLP's "Maude Pie" I have concluded that I have Maude moments as much as I have Pinkie moments, in my head, and my Fluttershy moments and Twilight moments are balanced. My friends by now understand that I'm good at switching back and forth quickly. Currently, I am both Maude and Fluttershy. Deadpan and flat affect, shy and soft, desperate to keep the peace and remain stable.

And now, I shall write a thousand poems about rocks.

Seriously. Maude. This is a stand alone episode, so anyone who has missed the new season will be able to watch.
https://www.youtube.com/watch?v=48kyeZ02RAk
brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
I had so much amazing sushi it was amazing. I watched with amusement as one friend requested lobster miso and got, literally, a bowl of miso with a lobster claw in it... in the shell, and no tools save for chopsticks. I wanted more sushi, and they let me have more sushi because I fucking could, oh my gods, even the waitress was impressed.
I walked around a shopping area at night with friends and I didn't have a cane and it was all fine, and I socialized easily with four good good people, and when I woke up in the late morning, I hurt so badly that the only way I could get out of bed and walk anywhere, say, to the bathroom, was to put myself back into a half-asleep state.

And then... then, I got asked to weigh in on a discussion about how "our organic bodies must learn to heal themselves without medicine blah blah blah" and I was too tired to give a smackdown, so I just warned that HOLY NAKED CATS CHRONIC ILLNESS AND DISABILITY DOESN'T WORK LIKE THAT YOU ETERNALLY FLOATING-HEAD HIPPIE WANNABE. Never tell someone who needs certain medications to function to just quit those medications, or you will have to deal with some very, very irritated cripples.
Like, HI, this drug here, synthetically derived from that plant over there, is saving my life, and fuck you. Yes, yes, the medical community likes to "push" drugs and all, but sometimes those drugs keep people alive, so seriously shut your rainbow-dribbling mouth.
I have spent over a decade writing essays and blog posts about this, starting from that floating head holistic hippie phase of Only Supplements and Essential Oils and Meditation, to Okay This Requires a Chemical Drug So I Don't Die But Can I Still Take The Supplements to Goddammit I'm Just Going To Balance Holistics, Botanicals, and Pharmaceuticals forever.
And the next person to use the words "poison" and "Harmacy" in conversation with me will be threatened with getting hidden completely if not blocked from my forum feeds. Because I really am a serious holistic and scientific advocate for various healing plants and botanicals. I am a shaman in training. But chemicals come from various places. And sometimes, the chemicals extracted by scientists have a better effect than the pure volatile chemicals.
You think side effects from FDA drugs are bad? Eat a whole plant and spend a few hours writhing in hallucinatory agony. And GUESS WHAT: some people never even get bad side effects. Trileptal. Zoloft. Baclofen. Soma. Tramadol. Codeine. Klonopin. Guess what? I'M NOT A FUCKING ZOMBIE. Guess what else? I AM BETTER THAN I HAVE BEEN. So you know what? Float on. The cloud are gorgeous up there.
But my body cannot organically heal itself, sorry. If you're on of those people who like to say, "I'm not against pharmaceutical drugs at all, but have you ever considered just letting your body work on itself naturally?" You will be met with raucous laughter that would make the Joker question my sanity.
I have been dealing with this since my early twenties. I'm gone through the ENTIRE gamut of medicines after being raised literally on vitamins and homeopathy and various therapies and acupuncture. I will not claim to be an expert. But I've had life experience.
So hey, if you're going to cheerfully toss out a casual, callous thought about how someone shouldn't take a pill anymore and see what happens, you really don't know. You don't know. And this is why I try to go out there and help educate, advocate and activist. Because if I don't, people will remain head-floating.
I was once head-floating, and it was a good high while it lasted. This is why many of my friends are scientists, medical doctors, medical students, researchers, etc. I ask a lot of questions. Because I never want to be that head-floaty again.

Anyway. I applied a cream with special oils to my chakra points on my feet, palms, and ears, and my forehead. I took my "harmaceutical" drugs. I stretched. I did acupressure. I meditated. I did my personal compensated form of qigong (of which yoga is only a small part, so don't bother), I recited various phrases to relax myself and let my darker emotions drain away.

In conclusion: If I specifically as for opinions about something incredibly specific, I ask that people stick to that topic. Unlike my friend's post, which was derailed by a hippie wannabe who happily invalidated everyone by insisting that all we need is our own organic body to be healed. Sorry, friend. I hope that drug is going to work well for you! I've never tried it, as I haven't needed it. But I'm happy to help with research.

Anyway. Sushi makes things better. Lots and lots of sushi. Lots. Sushi.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
The "The Greek Gods" Greek yogurt in Honey is one of my favorite yogurts ever. Their Pomegranate flavor is second.

(And I become incredibly perplexed when someone scolds me for liking it because it doesn't match up to the brand they like: which apparently comes imported from the inside of a magic mountain somewhere in Greece made from the milk of pampered special cows who eat magic grass that grows around the magic valley flowing around the magic mountain, and also the folks who make the yogurt are genetic mages and witches, and every so often the god Pan comes along and separates the curds from the whey and plays a magic song to make the cows happy. I never recall the name of this magic yogurt, because once it is spoken by an asshole, it fades from my memory, and all I can think is "Something Something Dark Side Real Greek Yogurt? I don't even know?". But remember - this is not my The Greek Gods yogurt, this is The Yogurt Snobs' yogurt, which is magically Greek, made with help from actual Greek gods. Which is apparently not the The Greek Gods yogurt. Remember that part.)

Seriously, though. This is really good yogurt. It's supremely creamy and rich and filling and it tastes like how full yogurt should taste without thickeners. I mean the one I like. The brand The Greek Gods. Which apparently is not the brand the naysayers of The Greek Gods Yogurt approve of. The main reason I love the The Greek Gods yogurt is because it helps keep me full when I have trouble eating due to various neurochemical eating problems. I would rather have all the calories than the thickeners pretending to be filling, am I right?
brightlotusmoon: (Snow White Blood Red Dragon Witch)
http://the-toast.net/2013/08/21/suggestions-for-street-harassment/

I really like this idea.
Considering what constantly happens to me, there would be a lot of strangers wearing black Pretty Pretty Princess Jewelry.

In related news: It happened in the local shopping center this afternoon. A young guy yelled out, "Hey! Smile, gorgeous! You'd look so much prettier! You need to smile! The world isn't so horrible!" And I stopped. I turned and looked him in the face. That made him stop and look at me. I parted my lips, then put my middle fingers to the corners of my mouth and lifted my mouth up in a forced grin. The guy's eyes widened. I said loudly*, "I'm disabled! I have muscle spasms! Sometimes it hurts to smile on command!" I kept smiling, and it must have unnerved him, because he walked away quickly. When I turned around to head into the grocery store, I noticed a few people in front of the coffee shop clapping and smiling. A woman came forward and asked if I was okay. I gave her a genuine smile and told her that everything was fine.

(*Loudly only because cerebral palsy tends to affect control of the respiratory muscles, which I recently learned by talking to other adults with cerebral palsy. Finally, I am learning things about myself that I always suspected.)

Also!
Frozen Mangosteen Juice With Pulp, 10 oz, thawed and perfectly awesome.
I firmly believe that mangosteen is one of those little treatments for my depression episodes.

And there have been a couple of studies that say enough mangosteen in high doses acts as a painkiller and anti-inflammatory very similar to a particular corticosteroid drug called Dexamethasone, which I find absolutely fascinating.

Handwaving that part, I just want to be excited about how tasty mangosteen is. And they say you only need three ounces a day for any kind of medical treatment. So if I go to H-Mart and get several of these ten ounce jars, I should be set for a few weeks.
http://www.entheogen-network.com/forums/viewtopic.php?f=10&t=8416
http://www.buzzle.com/articles/benefits-of-mangosteen-fruit.html
No matter what, mangosteen is awesome.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
Well, yeah.
My body is starting to do that thing where it refuses to acknowledge food in the stomach regardless of how much food and what kind of food. This morning saw me unhappily using half a roll of toilet tissue and doing that steady breathing where you calm nausea. So I keep getting vicious hunger feelings even after I have eaten. While at CVS picking up prescriptions, I bought a pack of dark chocolate Ensure Plus, because fuck you body. I've been steadily keeping fluids in me, but for some reason it's like, "Nope, there's no food in here. Put food in here!" "Body, I just put a huge bowl of cereal in you not half an hour ago." "No you didn't. There is no food in me."

And I do need to finally acknowledge this. A few days ago, husband came home very late after over twelve hours of work, and I knew he was overly exhausted, frustrated, and irritated in general when he stomped in and yelled at me for having the air on, even though I'd only had it on for less than an hour. And then he asked what I had done for dinner, and when I said, "Nothing yet..." while I was getting ready to get some leftover pasta - and that was when he channeled his mother's extreme guilt trip worst case scenario powers and said, "You know, I'm tired of you starving yourself. You wonder why you keep having seizures and paralysis when you're not eating. And then when you fall apart, I'll make sure to put you in the nicest nursing home I can since I won't be able to stay home to care for you." And I stood there, calmly feeding the fish, and I said, "I am going to pretend you did not say that." And then I said, "Well, I am going to microwave this bowl of pasta, and I am going to take it upstairs, because obviously talking to you is not a thing I can do right now." Later, he acknowledged his extreme dickish behavior and he apologized, but the hurt was still hurting. I can't blame him for guilt tripping me if he forgets he isn't clairvoyant and assumes I haven't been eating. Because I used to do that. And it hurt him and I knew it. We both know how to cut each other deeply because we've known and loved each other since before Y2K. When you love that intensely, you hurt that intensely. But that's okay, because sometimes it really needs to happen especially when you love each other enough to fear such a loss.
Adam often voices his fears as worst case scenarios, in order to make the reality easier to work with. I'm so used to that I often startle myself when I get emotional. I mean, he's Libby's son. My husband's mother is a true master of absolute martyrdom with such extreme guilt tripping that Fox could turn her into a reality show star, and most likely has bipolar disorder. And he's Bernie's son. My husband's father is an extreme genius who once worked for Lyndon B. Johnson's administration doing civilian military top secret engineer jobs that helped change the face of war, defense, food, space travel, and security forever, even if nobody will ever know (selling patents to the Pentagon means never seeing your name mentioned) - and Bernie may have undiagnosed Asperger's.. So Adam is a damaged extreme genius with extreme ADHD, mild precognition, mild clairvoyance, strong clairsentience, and the ability to change the world and get inside people's heads in the most subtle of ways. And I, being my parents' daughter, am a damaged genius in denial with the ability to become a massive force of nature if I must, exploding, destroying, and damaging on emotional and psychic levels that I normally would never reach without effort. My ability to strike below the belt is kind of ninja style, and people often assume that I hate them when I am mildly frustrated and irritated. Together, Adam and I can literally turn the universe upside down for brief moments that nobody will ever know about.
So, indeed, while those words made me bleed like hell, they needed to be said.

However, I really really am not starving myself. It's happening when I don't want it. And I am doing my best to stop it. It's mostly the fibromyalgia and anorexia teaming up. Fucking body, am I right? I don't have IBS, thank fucking gods. But I do have moments. Sometimes I have days. And sometimes it gets bad enough to warrant a nutrition shake every few hours just to keep from losing nutrients. And then it stops. It gets completely better all on its own. I haven't been hospitalized for anything since 2008. I consider myself extremely lucky. But still I am always vigilant...
brightlotusmoon: (Snow White Blood Red Dragon Witch)
Arguments over whose family member makes the best cheesecake aside, New York City and Brooklyn make the best cheesecakes in various bakeries.
I have eaten cheesecakes made by friends' mothers, grandmothers, brothers, sisters, aunts, uncles... and I have been told over and over, "My [relative] makes the best cheescake in the world and you will never convince me otherwise." And I don't want to convince anyone of anything. For them their relatives do make the best cheesecake, for their tastes.
But New York still makes all the best cheesecakes, for me. Adam brought home a medium plain cheesecake from Carnegie Deli, and it has that exact rich creamy fluffy thickness that I prefer in a cheesecake. No thick crust, no liquid texture in the filling. Just soft sweet fluffy thick heavy intense cream with that soft thick creamy audible sensation as the fork sinks in. I will eat a small slice every day until my Saturday birthday, and I shall be thoroughly satisfied.
I miss you, Brooklyn and Manhattan.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
So, as my Facebook friends have learned, I am dealing with a literal "nervous loss of appetite" - literal in that my biochemistry and brain chemistry is so fucked up that my hormones and neurotransmitters don't remember what actual hunger and appetite feel like (hunger and appetite are not the same, also).

See, when I had anorexia nervosa as a disease, it was always, "I don't want to eat"- and "I don't want to be fat" was an afterthought. The same thing is happening. Now the afterthought is "Well, I wouldn't mind losing ten pounds, it couldn't hurt, right?" And oh, dear ones, that is not a good thing.

So, the goal now is to teach my brain and my body to accept solid foods in the mornings, without my brain screaming about how weird it feels and without my stomach wanting to make it go away. And here is the thing: I have not lost much weight. According to my special scale, I lost maybe two to three pounds and my body fat percentage dipped a couple of numbers. Not a big deal, right? Right? Ha ha, silly, nope.
My doctors have been informed. They have been guiding me, nutritionally. I have several friends who are actively studying nutritional science and they have been guiding me.
If I can eat only half the sandwich, I will eat only half the sandwich, and I will save the other half for a couple of hours later. In the mornings, instead of taking my medications with coffee with cream and milk, I will actively make cereal, oatmeal, a nut butter/fruit preserve sandwich, eat as much as I can, and then take my pills. Yogurt is not really considered solid food, although my brain totally thinks it is. My body adores dairy and doesn't give a fuck what anyone thinks. Cheese, whole milk, full fat yogurt, bring it on. Also fruit. My fruit cravings have been wild. Now, I've been told to watch out for sugar, because "it is possible that all those cravings are for the sugar in the foods and not the actual foods" - on which I quickly called bullshit. My sweet tooth hasn't been very active. Certain fruits and naturally sugary foods taste much too sweet. I can barely handle ice cream these days, filling as it is - although frozen yogurt with fruit is tolerable. Of course, there is a chance they are right - everything is possible, probable, and plausible. But at this point, I just need to eat something. And if there is a slice of cheesecake available, I will take a few bites just to start the whole "hey, time to wake up the digestive process" thing.

So, I welcome anecdotes and experiences and even suggestions. But I don't wanna be policed, if you know what I mean. Like if a morbidly obese celebrity or a very very skinny celebrity gets targeted by a gossip community and everyone says, "Well, I'm just *concerned about her health*" and then nobody produces their medical degrees or doctorates, is what I'm saying.

I love food. I am sad. I want food in my belly and I don't want my body hormones and brain chemicals getting in the way. And above all I don't wanna start thinking that I'm going to be fat, because that means The Worm will come back, and The Worm is evil and will rip open all those scars like paper.

So, I love you guys, and if you want to say anything, go for it. Just try not to be The Health Police. I mean, unless you actually have a degree in science, medicine, health, nutrition, etc. - or you are at least studying
that sort of thing. If so, by all means, instruct me! <3
brightlotusmoon: (Peaceful Dragon Model 2)
I put Amazon Kindle on this phone and downloaded the books from my Kindle For PC. I'm doomed. I'll need a stronger battery for this thing; I've already set all the battery power saving settings I could think of.
Oh, Samsung Galaxy, you know my weaknesses well.
Also, I got a refurbished Samsung Galaxy S 3 smartphone at the start of January. It's white. AT&T gave me an early upgrade. Did I mention I got the phone? I don't remember.
I've been saying for years that I don't want a Kindle or Nook, and mostly it was because I didn't want to cram it in my purse. But this phone is a phone too and stays in the front section of the purse, whichever purse it is at any time, and reading is fun and good, and I'm fine with that. I'll never give up actual paper books. But I'm much better about ereader tablets than I was.

Also, migraine and fibromyalgia and spastic hypertonia like crazy and Raynaud's flares and knee problems and everything still hurts and mutter grumble mutter. But I have my box of Petite Ecolier chocolate biscuits and my Brookside Dark Chocolate Acai Blueberry Pieces and it is all good. And also Charlotte came over for the afternoon and brought sandwiches and Munchos chips, and that is all good. And I have my shelled pistachios and I have my yogurt smoothies and my sea buckthorn juice and really all is well.

So many books to read, still. Piles. Physical and digital. And to write. All these Stories. Stories galloping across my writerbrain until I grab a few bits here and there, and some of those bits get transferred to the Novel because they fit well.

I'm so tired and wrung out, but thank Apollo and Gaia that it doesn't go as deeply as it could. Argh, disabilities, etc.

Last night I dreamed of a library, my Library, the one that exists in multiple story worlds in the Storyland Multiverse. I was many librarians at once, I was so full of magic and power and Knowledge that I was brimming with light and energy. And today, I had a fantastic FB discussion that made the dream feel real in some ways...
I am the most disorganized, disorderly, random, crazy, wild home librarian you might meet; but that is part of my charm and my irritation. I have ways and secrets and methods that will make you exhausted and thrilled simultaneously.
brightlotusmoon: (Default)
Ohh, this really had better not be the edge of a depressive state. I'll need to stab something if it is.

At least I have cookies. We made the Usual: Chocolate chips, cinnamon, and whole Goji berries boiled for softness. Also the water became saturated with goji extract.
Healthy cookies? Maybe. Awesome cookies? Totally.

Okay...

Nov. 12th, 2012 08:02 pm
brightlotusmoon: (Default)
Adam just came home from work. We're having stir-fry, with string beans, mushrooms, and bacon. I certainly feel good about that. Next step: Learn to stir fry on my own.

I'm sorry. I'm sorry. I'm so sorry. I shouldn't be afraid. Not if it's only been a few days. My appetite has been odd lately. It doesn't mean anything threatening. I will fall back naturally. I will push myself up. I will be all right.

I'm so sorry. I am thinking of something cheerful and fantastic to post now; it breaks my heart when I vent things like this. But this is my journal; I must document.

No...

Nov. 12th, 2012 07:22 pm
brightlotusmoon: (Default)
Oh, I don't want this to be bad. Please, Higher Brain, don't let this be bad.
All day yesterday I had trouble eating, and by the time I went to sleep my stomach was sending "starving" signals to my brain. I was in pain, dehydrated, desperate. I got up and had a few sips of liquid kefir to calm my stomach. When I woke up this morning, I was horrified to realize that for the first time in seven years, I felt anorexic. I managed to eat just enough to keep myself well, and now I need dinner and can't even think. Eggs, most likely. Gods, this is not good. I don't want to feel this way. I need to make it stop. I don't want this.

Apologies if I have triggered anyone, but... I don't know how to finish that; my brain just blanked out. I do need food. Right now. I don't want to worry myself. Not yet. But I need to have an eating schedule. I need to eat...
brightlotusmoon: (Pixie Model 5)
I know it's not a good idea to post about food and health issues here, so I shall start by begging you to not feel jealous or mutter "I wish I had that problem" because you don't want it, you really really don't, because it's creepy and awful and disastrous and it makes me cry.
I'm 33. Who knows what will happen if I can't control this?

I eat, and I exercise, just not enough. My appetite stimulating ghrelin hormone has been chained in a basement, and my appetite is so poor that I can only finish half of anything.

And I am concerned and Adam is concerned and once I see my doctors they will be concerned and I just want to Eat All The Foods but it's like sand in my throat, and my stomach is so full and I want to cry.
Adam believes I am skirting the borderline anorexia edge, and I say hell no. I don't even think about fat or weight or appearance. I haven't lost or gained weight or inches or anything...yet.
But that may be the beginning stage of backsliding and I don't wanna! It scares me! I just want to eat normally again! I want to exercise enough so it makes me hungry!

Start me on bananas and asparagus and yogurt superfruit smoothies, I don't care, I just want to eat!

Okay, I'm finished.

Please return to your lives as scheduled.

Also, I'm sorry.
brightlotusmoon: (Default)
Yesterday, I spent my first full afternoon and night at Gurney's Inn Resort Spa hotel.
It's lovely.
Montauk Beach is right there, where the ocean rolls and pulls. The sound helps me sleep at night and relax during the day.
Yesterday evening, Adam and I went out into town for dinner. Most of the East End of Long Island closes around six or seven. We found Point Bar And Grill, which turned out to be perfect. I ate a bison burger with guacamole while Adam enjoyed mussels in garlic white wine sauce. At the IGA grocery store, I found the exact same mini cheesecake and mini flourless chocolate cakes sold in Gurney's little deli, with the same Gurney's label. The cheesecake is amazing. We picked up small food items to eat in the hotel room to avoid continuing to eat at the hotel restaurants.

Today, Adam was able to leave work early and met me at our room ahortly afer noon. For lunch, we went out to a clam shack called The Clam Shack, which Adam has wanted to visit for eleven years (we've been together for nearly thirteen years). Raw pearl oysters, lobster salad roll, Ipswich clams with butter. Vacations really are about the food.

No really, it's about the food. It's the Hamptons.

Also, I still feel terribly horrible. Sore throat, itchy eyes, severe fibromyalgia attack, neck pain, headache. But fuck that, whatever. I really don't care. I'm on vacation and I have been eating amazing food next to the Altantic Ocean in a fabulous Inn Resort Spa hotel the Hamptons. Repeat: Vacation. Amazing food. Ocean. Hamptons. Fabulous Inn Resort. So, hey, pain and stuff can fuck right off. Even though it won't. I will just yell at it with pills.
brightlotusmoon: (Default)
I am making my "Fuck a bunch of this, I'm curling up on the couch and performing standard cerebral palsy physical therapy until my body starts working as properly as this body can again..." facial expression.
I did my very best to organize the bathroom and bedroom and to clean up the living room and kitchen - which, for able-bodied people who judge what I do, means I probably barely did anything to make any visible difference, because I tend to fuck everything up, since all my perceptions are screwy. But that just means I need to take more time, more effort, and more energy. I am a horrible housewife and I know it. But I really want to do my best, even if my best means next to nothing.
Why yes, I am in a depressive state and honestly believe I am useless right now. Yay me.
And now I am burning all over and also fading all over and also spasming with tremors all over. Doing things is hard. And so, it is time to rest and see what simple things I can prepare for dinner. Perhaps a salad.

Why is it that red toned lipstick seems to help boost confidence, beauty, self appeal, and self esteem? I may be in a depressive state in which I feel useless, pointless, fucked up, and stupid, but I just applied a few swipes of Pretty Woman by It Cosmetics (deep dark cherry cocoa red) and I feel very slightly better about myself. Or maybe my give a fuck switch got turned off. Or maybe it is all an illusion, and as long as I keep it up, I will eventually climb out of the depression. In any case, red lipstick helps. (also pink and berry, but mainly dark red with pink, berry, and brown tones. Pretty Woman is my favorite for lots of reasons.)
Never mind. This is just a nonsense ramble at this point. Sorry.


https://www.itcosmetics.com/node/628

http://olfactoria.files.wordpress.com/2010/11/cherries.jpg

Also, I love cherries.
brightlotusmoon: (Default)
You know what is unexpectedly amazing? Adding a few droppers full of pure sea buckthorn fruit oil to coffee along with the usual dark cocoa powder and coconut palm sugar.

The oil tastes fruity and red and orange and yellow and juicy and thick and intense. And it is nurturing my whole insides, even my blood cells. Acid reflux goes away, digestive upsets go away, all my organs are happy, my joints are happy, my skin and hair and nails are happy. I mean, as long as I take it all the time. Sometimes it doesn't work. But that's medicine for you. Hit and miss. Nothing is a true panacea, but as long as I remember to do things right, take my life-saving pharmaceutical prescriptions, eat my nourishing foods, do my healing exercises, perform my personalized meditations, and work my personal magic, I feel all right.

I don't remember who first told me about sea buckthorn but I love them forever. It is still a step above moringa plant extract, but moringa is way up there too.

Fun holistic medicine is fun!

http://floraleads.com/OILSEA.HTM
http://www.taoofherbs.com/info/seabuckthorn/
brightlotusmoon: (Default)
We made brownies. We added a few drops of pure undiluted Sea Buckthorn berry oil, whose taste is incredibly difficult to describe. It gives the brownies a sweet, tart, juicy, exotic, heavy edge. Super major power antioxidant brownies are go.
http://montecho.wordpress.com/2010/08/10/a-taste-of-sea-buckthorn/

Adam will leave for work tomorrow, get on a plane to Las Vegas, and spent the next two weeks working at the convention. We decided to go to Tuesday Morning to see about their luggage cases, since Adam goes through them every three to six months. One of the employees recommended a hard-shelled London Fog luggage at a deep discount. Adam will see how it holds up in six months. We went to Grand Mart to pick up a few food items for me, and wound up with organic coconut milk, organic dairy milk, various snacks, fruits, and vegetables, minced garlic, eggs,, beverages, and miscellaneous snack items. Enough for me to have until he comes home.

I have SO MANY BOOKS to keep reading. That in itself will take two weeks. Tomorrow, I pick up the refilled prescriptions from my pain physicians, and on Friday I see my neurologist to bring her up to date on my life, my seizures, my disability winning, my new pain doctor, and seeing if all my brain drugs can be transferred to her for prescription refills. I'm relived that things are falling into place.
brightlotusmoon: (Default)
During breakfast, I mistakenly said, "This is a really great omulet." And thus began a hilarious epic discussion about magical foods and pagan diners and food actually being amulets and talismans with D&D references. I suppose "omulet" will be an inside joke forever.
Also, it was an omelet with hash browns and kefir cheese, which actually did taste magically delicious.

I wish I could remember the actual conversation, because I was laughing so hard I probably healed part of my aches and pains.
brightlotusmoon: (Default)
http://www.bakingobsession.com/2012/04/02/alduin-the-world-eater-dragon-cake/

Hey, I just saw it,
And this is crazy,
But this is real cake,
Can I eat it, maybe?

No. I can't. I can't conceive of anyone eating it. Maybe if a second cake was made. But I suppose it would need to be eaten. Because it's cake. CAKE, YOU GUYS, THIS IS CAKE.

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