brightlotusmoon: (Asha)
I did all my specialized personalized modified physical therapy exercises: The modified individualized Cripple Yoga with gi gong and isometrics, the stretching sets and cardiovascular sets, the strength training sets.

Now my body is ready to fall apart, lose consciousness, and catch fire. I hope I don't have those awful dreams in which my higher mind tricks me into thinking I am "healed" or some shit.

To head off any comments: When a person has various disabilities that are neuromuscular, muscuoskeletal, neurodevelopmental, and related to chronic pain of all kinds, healing exercise and healing workouts do not solve anything. There is no magic energy flow strong enough to tweak symptoms, syndromes, or conditions for the better. All it can do is slowly, carefully, mildly soothe and smooth out the cracks little by little. I'm going to fall over after I work out. It's going to take time and more, new pain. It's a cycle.

I already take [supplements that help with post-workout fatigue, with pain, with achy muscles]. I will list them if there is interest. No need to suggest anything. Eventually, I will feel mildly better, even though spasticity and hypertonia will just force everything back to normal, and then I'll need to play the game of "Is it palsy spasticity reset or epileptic seizure aura?"

This is an announcement: If you see someone with a disability like cerebral palsy and they are preparing for any kind of workout of exercise, don't make assumptions that they will automatically immediately need help from you. They know what they're doing, how to do it, why to do it. And they will ask for help if and when they need help.
brightlotusmoon: (Asha)
http://www.autistichoya.com/p/ableist-words-and-terms-to-avoid.html

Okay, so naturally I disagree with several of these. I use Idiot, Moron, Crazy, Stupid, Lame, Gimpy, Cripple. In fact!...
Via Facebook:
BTW, FYI: When I am stressed, worried, afraid, or panicked, I turn to satire, wryness, flippant humor, self-deprecation, and dark humor to soothe myself. It's not that bad right now, but if I discuss any health issues with blatant dark flippancy toward myself, it's just a way of being okay with stuff.
I'm sure plenty of folks do this. Sometimes it's all about sanity and security! I am such a lame cripple right now. Hah.
BUT: I won't use ableist words without a warning note that I personally am not offended by a few (specifically idiot, crazy, moron, lame, gimpy, cripple - I apply them only to myself). Since they are known offensive terms, and I know this, I'll make a point to not use them outside of me, myself. However, if anyone has issues with my potential use of those listed words specifically, please let me know.

See, I think lists of ableist words tend to go too far. But everyone has their own hairline triggers and I ain't stepping on those wires. But I won't step on eggshells. I will apply trigger warnings and disclaimers because I know very well. One of my favorite insults comes from Futurama: "Asinine Morons." It feels so good on the tongue. I just like the word Asinine. Maybe Moron could be replaced with Coward, Jerk, Pissant. I don't know. I really love finding words and terms that I could use instead of words that obviously refer to disabled people in an unflattering way. The thing is, with disabled people being among the most marginalized of the marginalized groups, it will take a long time to alter the vocabulary or lessen the ugliness of the words.
I still refuse to use "retard" because it reduces a person to slowed developmental growth above all else. And really, the only time I've heard "retarded/retardation" was with plants. And there should be other words.

On to other things: My migraine, which has been slowly creeping since last night, is being gently soothed by caffeine, B-Complex, Boswellia, Magnesium, Aspirin. The Ayurvedic pills - Bacopa, Ashwagandha, Shilait, Turmeric, Boswellia, Fenugreek - have been helping slowly but surely. And the stuff I picked up while grocery shopping are helping beautifully too. Yay symptom soothing!
brightlotusmoon: (Magic Goddesses)
So, I had what I considered a palsy victory and agony simultaneously.

Depressive episode gripping me hard enough to draw blood, I walked out - no cane, because medicine and meditative stretchy exercise like whoa - and took the Metro to Twinbrook, walked the ten minutes to Congressional Plaza, shopped, stopped to eat sushi, and carried two bags back to the Metro, right side burning and feeling ripped open while palsy left side felt ghost-like and nearly numb. Got to Shady Grove again, took the bus and stopped at the Redmill Center right near my house community, went to the CVS and bought drug refills, limped and shook and spasmed and gasped as the bus dropped me off across from my townhouse community, walked with three bags that felt like dead weights, stopped to get the mail, went home, went upstairs, collapsed, and very weakly, feebly flailed and flapped and cried out "Yay, I did it, go me!"

I got myself belated birthday gifts, especially because the Rockville Ulta now carries
It Cosmetics´╗┐, which is my top favorite makeup brand in the world, which I just learned today so it was like a cliche of angels singing. I'd been waiting for my Ulta to acquire It Cosmetics since last year, when the Silver Spring Ulta announced they had the brand and that Rockville would get it this spring. YES. I was also flush with coupons and points so I splurged: I got the new liquid peptide foundation and the new thin-brush peptide mascara; and also Ecotools brand konjac facial cleansing sponge made of konjac fibers, because konjac is one of the most awesome internal and external cleansing fibers in the world.

I was in horrid pain, honestly awful bad bad pain, pain that was like trauma pain... and I was happy. Because PAIN pushed me on. And VICTORY. It was nearly joy. And joy is something above emotion, after all.

I knew that my cane might have made my hands more full. But the fact that I was capable of doing all this without a cane... it was just... well, you know. Hemiplegic spastic ataxic cerebral palsy, spastic hypertonia, fibromyalgia, osteoarthritis, sciatica, lordosis, migraine pain, major depressive episode, autistic symptoms making everything loud and bright and I could barely look in people's eyes despite cheerful conversations. I did STUFF. I did stuff that made me feel good. I will be in pain for days. But I did it! I think the agony will be worth it, the codeine and the tramadol and the baclofen and the clonazepam and the capsule supplemets of devil's claw and MSM and cayenne and mangosteen and noni vinpocetine and oh my gods I can hardly walk and I am shaking all over and my muscles feel torn up and I want to break down in tears.
But I am proud of myself?
*wipes away tears*

Damn, I really hurt...

...and I forgot to buy milk.
It's okay. I have enough coconut cream, coconut milk, and sweetened condensed milk to work with my coffee until I can get to Giant. Plus a hand mixer blender device to whip it good. At Giant I can grab a lightweight jug of kitty litter and a half-gallon of whole milk, and canned cat food. I can bring a backpack plus a tote to see what will fit how, so I can take the cane.
I'm twitching so much. I wonder if this entire day was one big seizure trigger. Fuck.

Now, today, the day after, I am slowly preparing for my first meet and greet appointment with the new psychologist. My last one got too expensive after I switched to Medicare, and this new woman will work on a sliding scale, with my mother willing to help.
brightlotusmoon: (Asha)
Um. So.
Last night I had a small seizure - awake but barely conscious. And the baby migraine kept pulsating. I forced myself to sleep. I woke up at noon with the migraine even worse. And the thunder rolled.

The seizure itself was pitch black. It had me moving through a completely moon-less woods, holding the hands of two people - Alicia and Ananta - and stumbling over things, which transferred agony into my skull. I was shaking. They kept saying, Just a little more, just ahead, it's a rose light, you'll recognize it...
And there it was like a rosy mist with light inside. At the last minute, Ananta picked me up and carried me directly into the mist. That is all I remember.

I wound up staying in bed for an hour, because Calliope kept vocalizing, nuzzling and bunting me, and settling in to nurse on my shirt. I know she loves me deeply, but I must ask the cat behaviorists here what it means to be truly, actually loved by your cat, because Calliope will not go to bed until I go to bed, Calliope will follow me around the house, Calliope will check on me just to make sure I exist.

After I fell out of bed and took my medications (baclofen, tramadol, codeine, coffee, omega-3, MSM, L-Tyrosine, probiotics, inositol, shilajit, ashwagandha, noni, mangosteen, devil's claw, magnesium oil massaged into the severe stiff burning screaming lower back).

I am not fooled. I may be upright, typing. But I am having moments in which I need to breathe, collapse in the chair and massage my head. This will be a very interesting afternoon. Luckily, I have DVRed Archer, Bitten, Being Human, Lost Girl, etc. Just in case.
Is it sad that I want Ray and Lana to be my nursemaids?
brightlotusmoon: (Asha)
Oh. It is so QUIET. It has been quiet all day. Like being in a small, careful bubble. I feel as though I've been automatically meditating since I woke up.
I've been reading books, reading books, in between checking various websites, like webcomics, Facebook, blogs, entertainment sites. In the background, varied television programs have been running. Food, comedy, animated, fantasy, history, science fiction. The cats have gently nudged and loved me. I look a long, slow, enveloping shower, moisturized with oils and creams containing dragon's blood resin and powerful fruit oils. I massaged all my joints and my head with MSM lotion and magnesium oil. Among the supplements were hyaluronic acid, guarana, red raspberry ketones, african mango, devil's claw, biotin, inositol, mangosteen, shilajit, noni, probiotics, pure high omega-3, vinpocentine. The migraine is still throbbing, but like everything else it is still in the background.
There has been, for hours, a constant low-level anticipation. I don't think anything will be happening, but I feel as though I am waiting for something.
It has been the most quiet, most gentle birthday I have ever had...
brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
Oh! Oh! I forgot! I'd promised a few people here that I would let them know how I was doing with super high doses of pure Omega-3, particularly DHA. As it turns out, calamari oil is much better than krill. And so, I've been taking calamari oil, which contains 500 mg DHA, and 125 mg EPA, which I think is the highest one can go so far.
https://www.swansonvitamins.com/swanson-efas-super-dha-500-from-calamari-30-sgels
It's officially been one month, so I think it is okay to report my findings so far: I feel as though my brain is, for lack of a better term, nourished. My concentration has gotten easier. I had been considering going back on an ADHD drug for ADD-Inattentive, but the Calamari Oil seems to do what Strattera did all those years ago. Neurologically, I feel, well, hmmm... padded? This is so hard to explain! Neuromuscular issues seem slightly easier. Like, I am starting to unconsciously use my left hand more often for "simple" tasks like pouring liquid, picking up small objects. I can't insert and turn a key in a lock, and I can't squeeze any exercise equipment, but the little tiny compensated things are starting to feel smoother. Does that make sense? It really does feel like a kind of CNS nourishment.
I'm including the link to the product I'm currently taking. There is another brand via Vitacost, called Doctor's best, that offers the same dosage at different prices with different pill counts, but this is what I'm using. I even punctured a capsule to see how my cats would like it. Luna and Calliope seem intrigued. I may just brush it into Jupiter's fur, since he has dry skin.
There have been some studies showing that some brain injuries can be partially treated with extremely high doses of pure omega-3, so I'm happy to make myself a self-advocate subject. I don't know what this will mean for my CP as a whole, and I am not expecting nor hoping that anything major will happen. But I do like this feeling that my neuromuscular issues might ease up just enough to let my hemiplegia become less spastic...
brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
Self and life have been interesting.

Mom is helping finance a medical experiment after reading up on pure omega-3 fatty acids potentially treating brain injuries. We've bought pure krill oil softgels, and I'll be taking 2,000 mg for one month to see what sort of effects it has. If something interesting and positive happens, we'll just keep going.

My neurologist has suggested that I increase the Zoloft to 150 mg - taking a whole pill and a half pill. I've taken a bunch of tablets, cut them in half with the pill cutter, and put them in a separate bottle. If this works out after a few weeks, we'll put me on 200 mg, the highest dose. So far, it has in fact been fantastic. My OCD is almost completely under control as far as certain aspects go. Specific compulsions are controlled now. Specific obsessive thoughts are controlled. I mean, the symptoms are still there, but I no longer feel them so intensely. The only problem with putting me on that 200 mg dose is the tolerance factor. But since my chemistry is interesting, it may not be too problematic in the long run. I'm game if it actually works. Besides, the addition of the krill oil will most likely help.

I've been taking probiotics every day again. Swanson has good ones (Lee Swanson's Ultimate Probiotic Formula, Dr. Stephen Langer's Ultimate 15 Strain Probiotic with FOS). That "Ultimate" one offers around 70 billion organisms per capsule. It'll take a couple more weeks, but so far I'm feeling quite well.

As it turns out, my digestive system does not like Papa John's pizza. It's the only pizza to ever cause so much intestinal distress that I had stabby pains around my lower abdomen. And my phobia doesn't want me to go any further with this.

Within the next few months, I will be making plans with my doctors to schedule a tubal ligation, hopefully via mini-lap. Come the end of April and after my 35 birthday, I will have been on hormonal birth control for 14 years. We known damn well we're never getting me pregnant and we still have absolutely no desire to have children. And once doctors see my medical history, they won't argue my decision. On Facebook, people have insisted that Adam get a vasectomy instead, and didn't seem to get the point when I mentioned things like how he is not the one with the uterus, how I refuse to ask him to alter his body for my reproductive sake, how there is always the possibility of rape. You know, the whole "my body my choice" deal that is still not taken as seriously as it should be, etc.

Also: Osteoarthritis. My knees have bruises all the time. The ligaments around my right knee are insanely painfully tight. I'm so tired, but I have to keep going. It's not so much fighting as it is working with and around symptoms. I can't "fight" cerebral palsy anyway. That's a static brain injury. I never understand when someone says "I will fight cerebral palsy with all my strength!" because it's not the palsy - it's the comorbid and associated conditions that need "fighting" and handling and such.

I have tiramisu. It is so very very delicious. It came from a local delivery place called Milano's. They make it themselves. It's light and creamy and rich and intense. Also, the pizzas and the subs are fabulous. If I ask for a chicken parmesan sub with basil pesto and fresh mozzarella, they'll do it happily.

Adam will be in Las Vegas for over a week. Hopefully he'll have a moment to get doughnuts from the All-Star doughnut place, because I still remember the buttermilk doughnut he brought home from San Francisco months ago.

Anyway, it has finally come to pass that Jupiter and Calliope have become friends. I watched them nuzzle and groom and even bunt each other several times, with Io pressing her tiny body against Jupiter's big body as she walked with him, with her tail in that question mark shape that indicates affection. Calliope has been rolling around next to Jupiter and pawing at him for weeks, and it has finally paid off. Also, it looks as though Luna as accepted Io as a rough and tumble playmate. For Luna, this is amazing, since she still prefers to be the queen.
Adam´╗┐ wanted to name the new cat after a moon of planet Jupiter. I wanted the name of a mythological figure. So Calliope was nicknamed Io, which is naturally a lovely shorthand - and also a mythological figure anyway. It helps that Calliope is also the name of an asteroid. Astronomy and mythology are awesome.
My cats are all friends. Yay!

And I have a Ty "Beanie Boo" doll called Glamour the Leopard, and it's my favorite thing to cuddle for comfort. The Fluttershy and Pinkie Pie dolls now belong to Calliope and Luna, and the Dolphin Beanie Boo passes between them. Calliope is very big on stuffed animals. It's adorable. She still nurses on my shirts when we lay down together.

I've been watching "Red Dwarf" on Netflix with Adam while he's had time off. I forgot how wonderful Kryten is as a character.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
Everything is ow and headpain. Fuck you too, winter.
http://www.headaches.org/education/Headache_Topic_Sheets/Coexisting_Migraine_and_Tension-Type_Headaches
You know those coexisting migraine and tension-type headaches that wax and wane as they will? I keep having those. I don't like taking codeine every few days, but those daily injections of unicorn blood don't seem to be working. I guess I'll just have to trust those evil evil pharmaceutical medications that actually stave off the worst of the symptoms. Evil, I tell you. How dare they ease my pains without being freshly cut from a rainforest tree fertilized with dragon manure. Wait, that's the fantasy version related to the croton lechleri tree, which makes dragon's blood resin, which is lovely, but only as a topical treatment.

Apologies. I'm just so, so, so tired of strangers coming down on me for taking prescription narcotics with my neem pills, moringa tea, turmeric extract, and vitamins. Look, cannabis is still illegal. I can't do yoga. Acupuncture is only temporary. Happy Positive Thoughts tm don't work. I've told my story over and over: the story of how I was raised on holistic alternative remedies, shunning Big Pharma, giggling whenever I passed a pharmacy with the P on the neon pharmacy sign blown out, insisting that all I needed were supplements, essential oil massages on my feet, alternative treatments, and meditation... until I hit my mid-twenties and I really desperately needed pharmaceutical prescription drugs to keep from, like, almost dying.
Seven pharmaceutical drugs and thirty herbal supplements, balanced together since 2006, in the full and total knowledge, understanding, and harmony that everything comes together in certain ways for me, myself, and I... and I still get scolded and yelled at for "giving all my money to Big Pharma" when "all I need is this herb" to "cure all my ills" and oh my god shut the fuck up. Not to mention how people treat me when they learn I'm autistic with OCD, ADHD, memory loss, learning disabilities. Vaccines! Gluten! Dairy! Negative emotions! Psychic trauma! Negative thinking! Not enough meditation! Too much of the wrong meditation! Not enough kale! Eating meat! Not juicing every day! Prescriptions! Doctors! Chocolate! Wine! Everything is bad for me! Except natural and organic and botanical things! As long as I change my life to completely organic I will be healed and I will live until age two hundred!

*cough*
I'm done.

I've also been in a clinical depression episode for a week so far, but the symptoms are presenting in an interesting way. The hollow parts, the empty spaces, are very quiet and soft. I am living in a mist, with shadows at the edges of my sight. I am treating the symptoms as well as I can for my own self, my own individual health. The phrases "Have you tried [treatment] yet?" and "You should try [treatment]" are starting to make me twitch.

This essentially sums it up. You don't have to be queer to appreciate it, of course (I am bisexual myself), but it is one of the most accurate, respectful, and honest videos I've seen on the subject.
https://www.youtube.com/watch?v=yqtuwXGvpK4
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 Blood Red Dragon Witch)
Because I can never recall the actual daily Pain and pain relieving supplements off the top of my head that I personally take:
MSM, Pau D'Arco, Sangre de Drago, Sea Buckthorn, Vinpocetine, Nymphaea Caerulea, Serrapeptase, Noni extract, Mangosteen extract, Cayenne extract, Kava extract, Passionflower, Ashwagandha, L-Tyrosine.
There we go!

(Disclaimer: My body is not your body. My pain is not your pain. My chemistry is not your chemistry. My neurology is not your neurology. Your mileage may vary.
If you choose to research these supplements, and especially if you choose to take any of these supplements be reasonable, rational, and cautious. These supplements may not work for you the way they work for me. They may not work at all.
If you wish to purchase and test any of these supplements, I suggest the following websites: SwansonVitamins.com, Vitacost.com, PuritansPride.com, which all make quality products that I trust. I am not responsible for anything except what I type and say.
Please do not ask me simple questions that Google can answer, such as "What does this/that supplement do and how and why?" If you are unable to do a Google search, tell me why and I shall provide links. However, I am not a medical practitioner and I only study holistic medicine as a hobby. I do not know everything. It is your responsibility to do your own research and make your own decisions. However, I am happy to answer questions about how these supplements have worked with me, why, how, etc. Please holistically drug yourself responsibly.)
brightlotusmoon: (Snow White Blood Red Dragon Witch)
A repost of something from last year that I'll need to update:

The full list of prescription drugs and supplement pills.
I do not take all the supplement pills every day; the list is only to remember the ones I have taken in the last year, which is why the list is so long.

Prescriptions:
Ogestrel-Hi
Trileptal
Zoloft
Baclofen
Klonopin
Soma
Ultram
Albuterol


Supplements:
MSM
Hyaluronic Acid
Vinpocetine
Magnesium Citrate
Apple Pectin
Glucomannan
Bamboo Silica
Chlorella
Triphala
Ashwagandha
Neem
Shilajit
CoQ10
Alfalfa
Passion Flower
Valerian
Inositol
Biotin
Proteolytic Enzymes
Yerba Mate
Cayenne Extract
Resveratrol
Turmeric
Royal Jelly
Oregano Oil
Kava
Chromium Picolinate
Mangosteen
Goji Berry
Noni Berry
Cinnamon
Guarana
B-Complex
Ascorbic Acid
Vitamin D
N-Acetyl-Cysteine
L-Tyrosine
Cat's Claw
Devil's Claw
Pau D'Arco
Sea Buckthorn
Goji
Noni
Mangosteen
Moringa
Magnolia Bark
Raspberry Ketones
African Mango
brightlotusmoon: (Snow White Blood Red Light)
It was 1:40 in the afternoon by the time I finished this post; I began at 1:09.
I woke up at 11:30 only because my husband roused me and put a can of energy drink to my lips while helping me lift my upper body, right before my cat Rose sat on me and licked my whole face, until I managed to fall carefully off the edge of the bed, hobble to the bathroom, and take a hot shower while leaning against the wall. Wrapping my hair in a towel at least helped stretch my neck and shoulder muscles. I stumbled back to the bedroom, got partially dressed, swallowed my morning drugs and supplements (Trileptal, Klonopin, Ultram, Picamilon, L-Tyrosine, Guarana, Hyaluronic Acid, Ashwagandha, Devil's Claw, DMAE, Raspberry Ketones, Sea Buckthorn) with coffee (made with cocoa, milk, cocoa, sugar, and cocoa). I got fully dressed fell onto the bed, struggled back upright, performed very gentle exercises reminiscent of certain basic yoga poses with extreme modifications, pulled some muscles in my lower back, applied heat massage, complained to my cats out loud since they couldn't tell me that my only limits were mental, bad attitudes, set by myself, because my cats loved me without telling me how to do things.
And so now I am sitting at my work desk with my cocoa coffee, Futurama via the Roku box on my 20 inch flat screen TV, the fish tank full of happy serene fish doing happy serene fish things. The codeine and baclofen I just took have taken effect, and I feel human. You know what it's like to not feel human, or normal, or easy, right, internet? Are you sure? Because I see so many articles about how easy it is to break limits, or not even have limits by - get this, ha ha - pretending you don't have limits. I just wanted to show you what my days are like. Because it's going to continue. Soon, I'm going to take afternoon supplements (MSM, Biotin, Inositol, Noni, Mangosteen, Goji, Pau D'Arco, Shilajit, NAC, and the drug Soma - and if you worry that I take too many pills in a day, I am going to laugh very loudly and point to all the people who take even more pills, by which I mean prescription pharmaceuticals alone because supplements don't work for them).
And then I will gently exercise some more, and have I mentioned that through all this I write and edit fiction stories, that novel I sent to a major publisher and agent, blog posts, and long discussions with beloved online friends? And I will read three books at once, maybe four, bit by bit, and since my husband is actually home from work I will spend time with him. And then in the evening, I will take my nightly medicine (Ogestrel-Hi, Trileptal, Zoloft, Soma, Apple Pectin Fiber, Chia Seed, Passion Flower), and crawl into bed like a bruised person, hopefully make fantastic love with my husband and have a wonderful, pain-relieving orgasm or four that will help me sleep blissfully (because sometimes it hurts too much to have sex but I do it anyway because it counts as medicine). And then I will wake up, either to see my husband off to work or to rouse myself, probably not until after 10:00 AM or so, and it will all continue, probably with additional errands and house chores.

There it is, internet. You have now seen my daily disabled life. I got lucky when I was approved for SSDI in 2012; I am lucky that I get enough monthly payments to keep me going alongside my husband who works himself bruised. I am lucky that all my limbs actually work, even if they hurt constantly in various ways. I am lucky that I haven't been to a hospital since 2007, and that was for a concussion and seizure. I have a lot of luck on my side. I also have a lot of limits. So, dear internet, please do not tell me what I should do with my limits unless you mean to help me move those limits a little higher so I don't need to push, I just need to move up more. Pushing my limits is fine, but I would rather move those limits up more so I have more room to go before I run up against those limits again.

Ah - I forgot to add that on the days when depression and anxiety attack, I am often physically unable to do much for several hours. But nobody needs to hear about that. Clinical depression is still stigmatized so severely that I still feel very uncomfortable discussing it. Also, I didn't mention the tiny complex moments when the cerebral palsy trips me up in many ways, because that would take forever. And I didn't mention the specifics of epilepsy, or fibromyalgia, or any neurological and neuropsychological conditions like ADHD Inattentive and OCD and Dyscalculia. Nor did I mention the specifics of fibromyalgia or various nerve issues, because who cares? That's boring. But it is all there.

Also, for those wondering why I take raspberry ketones, which have been touted as some sort of weird weight loss miracle:
http://ezinearticles.com/?Raspberry-Ketones---6-Health-Benefits-Of-This-Natural-Remedy-Now-Revealed&id=6875845
They are actually highly antioxidant, a brain tonic, an anti-inflammatory, slightly analgesic, full of good omega fatty acids, and good for digestive health, with some research showing that it can slow cellular aging.

And I didn't mention the daily skin moisturizing. If I don't apply specific healing oils and extracts to my face, neck, chest, hands, arms, and legs... it's not a happy day.
http://www.etsy.com/listing/99942639/sale-41-marshmallow-and-manuka-soothing
http://www.etsy.com/listing/84293185/2in1-manuka-honey-amazonian-body-butter
http://absilk.com/ssbodylotion.html
http://absilk.com/extremecream.html
http://www.etsy.com/listing/111067887/beauty-by-brazil-all-natural-amazon
https://store.abbeystclare.com/skin-care/rice-olives-cleansing-and-facial-serum-amazing-skin-treatment-melts-away-eye-makeup.html
http://www.skinactives.com/EMUlator-Oil.html
http://sweetsationtherapy.com/item_339/LumiEssence-Body-Organic-Advanced-Brightening-Repair-Treatment-with-Kojic-Acid-Arbutin-Vitamin-C-5oz.htm
brightlotusmoon: (Snow White Blood Red Dragon Witch)
Let's see. *fingercounting* Sleep seizure, postictal migraine, pulled muscle in my neck, extreme hypertonia with hemiparesis and ghost nerve sensations in the left arm, hip pain, sciatica, chondromalacia patella, TMJ, difficulty swallowing and speaking due to spastic ataxic cerebral palsy complexities, ankle pain due to tripping over my own feet, right wrist pain due to ulnar nerve entrapment, mild asthma attack, difficulty working both hands, hay fever, swelling in right knee...
And of course the wonderful fibromyalgia flare.
*fingercounting* Eighteen distinctive symptoms. So far.
Pain level: Eight on a one to ten scale.
Oooh, eight! My favorite number and also the infinity symbol when turned on its side! *clapping* Clapping hurts, but fuck it. *more clapping*
Thank you, pills and special stretching and mind over body quantum magics. I have no idea what Normal is right now, but at least I am conscious and moving. That is a wonderful thing. I still win.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
So, until I see a full end to these violent migraines, brain pains, and flares of fibromyalgia, sciatica, chondromalacia patella, knee arthritis, ulnar nerve entrapment, hypertonia spasticity with hemiparesis, hemiparetic ghost sensations, itching, shaking, hay fever, exhaustion, true muscle weakness, and hypersensitivity... I will be pretending like all hell to be a normal ordinary human. Nothing to see here, nope, move along...

What with husband working a computer trade show job in Manhattan for the next couple of days, my sweet Charlotte will be coming over every day to help me work on organizing the rest of the house. Gods know I will need such help.

Also, I have a plush red fox and a plush gray wolf to cuddle, and my darling Serenity the Pony to whisper to, kiss on the lotus bud blaze mark on her forehead, brush her long long hair with a boar brush and wood comb.

And naturally, there is my wonderful balance of pharmaceutical pills and supplement pills.
Klonopin, Codeine, Ultram, Soma. Ashwagandha, MSM, Yerba Mate, Devil's Claw, Raspberry Ketones, Mangosteen, Moringa, Goji.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
You know... between strangers still insisting that they know better than me and my doctors about my medications and disorders and this new bizarre, creepy, fucked up conspiracy theory about actress Angelina Jolie, I think I need to put up all my psychic shields whenever I am on Facebook.

(Quick note: I once met Ms. Jolie with Mr. Pitt, very very briefly, in Washington DC, last year. I never told anyone, because who cares? She's just a person. Angelina was very beautiful, very sweet, very kind. Brad was compassionate and funny. And now, I am reading about conspiracy theories regarding her "glorifying expensive self-mutilation through the guise of pretending she wants to avoid getting cancer" and because her doctors scammed her with the "lie" that she was at high risk. And because she has the money to afford a double mastectomy and ovary removal, and because she has gone public after the first surgery, she obviously wants to spread her horrible ideas to poor mortal women who have those genes that might cause cancer in their futures, because she was lied to by this pharmaceutical company and thinks it will help women.
This conspiracy theory is so sickening that I cannot even talk to the friends who believe it. They believe it so deeply that nothing will change their minds, the same way they believe that all vaccines cause diseases and autism. I love these friends. I can still be friends with them. But I cannot speak to them about any of this. They make me want to cry and retch.)

In the meantime, the carisoprodol (Soma) and acetaminophen-codeine #3 have been working very, very well, making me highly relieved. Of course, since pharmaceuticals are poison according to some people, I am obviously destroying myself from the inside. But at least I feel better.
And then there are the supplements that are supposed to be quackery, false, hocus pocus. MSM, Hyaluronic Acid, Biotin, Devil's Claw, Alpha Lipoic Acid, Pau D'Arco, Chlorella, Shilajit, AShwagandha, Goji Berry. They are also making me feel better.

I'm so sorry to harp on all this again. But I cannot walk away from these verbal assaults. I keep trying. I just want people to leave me to my own health knowledge. I am leaving them to theirs.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
So, recently I have been doing these very specific limb stretches that were taught to me by my childhood physical therapists to loosen me up, since the cerebral palsy was extreme when I was a kid - I mean, for mild CP, you know?
But today has been a particular hell on my body. And no matter how long and often I stretched, nothing actually helped... until I took a combination of baclofen, tramadol, magnesium, skullcap, vitamin D, and vitamin C. Then it got better.
I was casually chatting with an old acquaintance and I mentioned what I was doing. The acquaintance immediately lambasted me for "giving in to evil Big Pharma and holistic quackery" and "being brainwashed into thinking those poison and placebo drugs help" (actual quote).
After I picked myself up off the floor and finished laughing and wiping away tears after more laughter, I typed, "Aww, sweetie! Thanks for looking out for me. It's so nice to know I'm loved! Anyway, I gotta go take my nightly seizure drugs and antidepressants and birth control pills and relaxing supplements. You know, because I am a member of the League of Evil Pill Taking Citizens. Don't tell anyone, but we're going to take over the world by treating our chronic illnesses with drugs and supplements until we feel better, and we're going to tell other patients what we're doing so they can make informed decisions for themselves. I can't give you specifics or I'd have to kill you. I've already said too much. Uh oh, my superiors are messaging me. Gotta go!"
I closed the chat window and signed out, and so far he hasn't replied. I'm currently coming up with a better, sillier name for this League. Just to fuck with him. I know I shouldn't, because it's cruel. But seriously. Whut. LOL.
Back to stretching. It hurts, but in a really good way, you know? Ahhhh, stretching! Also, the stretching brings back some amazing childhood memories. I remember being in a room with a blue floor, trying to manipulate tiny plastic figurines with my left hand while rolling on one of those huge exercise balls. When I was little, I called it torture. Now, I want one of those huge balls in my writing room to work out with.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
I often "cross post" between here and Facebook, since sometimes stuff I say there, in increments, can be transferred here as stories and ruminations.

Lately, I've been getting genuinely angry at many Facebook friends and acquaintances - and it takes a fucking lot to make me genuinely angry. Multiple people on my Feed have been reading and watching the internet and talk show versions of medical conspiracy theories and tabloids - technincally slightly true, definitely not completely true. "So, these doctors on this daytime talk show or YouTube segment or extremely biased blog are saying that almost every serious health problem in America can be linked to pharmaceutical drugs or the side effects from those drugs. So, have fun taking those deadly dangerous pills! I'm going to be all smug and condescending because I don't take any pills at all even though I probably should for medical conditions I refuse to talk about."

Have you ever had a triggering of your rage gag reflex? Not quite retching, but a mental version of "I am about to explode rage all over this!" because something has truly, severely pissed you off. That has been me over the last couple of days. Some very very intelligent friends have been reposting these ridiculous claims, and my response is usually double facepalm and "For fuck's sake, take everything you read and hear on these blogs and talk shows with grains of salt, please, please, please." Like... okay, I like watching the Doctor Oz show every now and then. Quite often, he is extremely insightful, helpful, and correct. But he is also trying to get high ratings. Same for that talk show The Doctors. Who also used to be Oprah's friends. A panel of four core doctors from different specialties talking about medical breakthroughs, things that are good and bad for you, et cetera. Apparently, a recent episode featured the ER physician claiming that pharmaceutical drug side effects were causing most of the country's medical problems. At which point I facepalmed, went online to trusted websites, and proved him essentially wrong with a few keystrokes. It turns out that after the episode aired, multiple physicians and specialists who were not mere ER doctors called bullshit and blasted the episode and the hosts for being irresponsible. Again, ratings ratings ratings. But so many Facebook friends are falling for it that I wound up "hiding" their posts because I was getting seriously insulted. Funny that this happened after I made a status post about how grateful I was for the pharmaceutical drugs I've been taking to help mitigate my conditions.

Look, pharmaceutical drugs are not the Best Things Ever. They have serious side effects for many people. They alter the body and brain in ways that can be more damaging than the conditions they are treating. BUT. For millions of people, they are lifesaving. They have treated the symptoms of thousands of crippling diseases successfully. For many patients, they are the only options, because holistic medicines, supplements, and alternative therapies haven't worked for those patients (and of course, holistic medicine is either The Best Only Medicine Ever or Quackery Placebo Bullshit). So, to say something like "I heard from a TV doctor that pharmaceutical drugs are the main cause of most medical problems" and to follow it up with a slap in the face like "Good luck taking your pills, guys!" is... a slap in the face. Especially if that doctor was being paid to exaggerate findings or to promote some sort of media, to gain readers or viewers. And especially if the people repeating these claims hadn't seen a doctor themselves in years due to lack of opportunity, fear, hatred, or simple mistrust of doctors - which makes me laugh my ass off. "I don't trust doctors, doctors have never made me feel better, but this one doctor said this thing and I believe it completely and so should you!" It is one thing to drink the Kool-Aid. It is another thing to splash the plastic cup of Kool-Aid in my face.

You know, this is why doctors practice medicine. Practice, not master. It is a practice. Many many times, they get things wrong. Doctors are not perfect. Nobody is perfect. Not even you. So, dear Facebook people, please double check your facts, get second opinions, and actually think about it before you quote what sounds like medical conspiracy theories.

In the meantime, I'm going to sit back, smile, watch silly cat videos, and take my evil pharmaceuticals and my quack herbal supplements that are all maliciously working wonderfully to effectively relieve the worst symptoms of my twenty separate medical conditions. Damn them! *nods*

Also, in May I have my first appointment with a licensed craniosacral therapist. Having had craniosacral therapy twice, with extraordinary results, I am eagerly anticipating this.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
https://www.change.org/petitions/chairman-murphy-and-ranking-member-degette-stop-threatening-the-hipaa-rights-of-people-with-psychiatric-disabilities
To quote a dear friend:
"I am a fully-functioning human being, mentally ill people pose NO greater threat to society than non-mentally-ill people, and we are entitled to exactly the same protections as every other person. Do not discuss these issues without allowing mentally ill people to educate you. Do not discuss these issues until and unless you are aware that mentally ill people are more likely to be the VICTIMS of violence than the perpetrators. Inform yourselves and actually talk to the people involved. Don't bring your own preconceived ideas to the table, call them fact, and suggest policy based on them. That's inhumane AND unlawful."

And I would like to add:
There are very different types of crazy. What I call Hollywood Crazy or Hollywood Mental Illness is usually the kind that is an exaggerated version of a disorder that is seen as a danger to oneself and others. There are people out there so terrified of this that even if they are mentally ill, they will refuse to say anything because ignorant family members might see them as Hollywood Crazy (see: "I am not crazy! I have never been crazy! Don't call me crazy!" often intoned with an air of fear, upset, prejudice.) And in those minds, Hollywood Crazy might mean commitment to a ward or facility, which is often seen as a terrible thing, not a helpful healing thing. We seriously need to change how we view mental illness and mental disability. There are so many people living with a form of mental illness who absolutely refuse any sort of treatment purely out of fear of ridicule, shunning, disconnection from family, even forced unnecessary commitment to hospitals. We need to show them that the stigma is human, driven by fear that breeds hate, and that there is no shame or fear in getting some sort of treatment.

***

Dear pharmaceutical drugs: I know people hate you and think you are poison, but I just wanted to tell you that I greatly appreciate your role in saving my life.
I will always balance you with holistic remedies, allopathic medicine, and whole body treatments. But I will always be grateful for the way you have helped me feel better, and even normal, under certain standards. I am one of those people who rarely experience the various side effects listed - which really, are simply issues reported by test patients during trials, which may or may not actually affect anyone. It took me years to realize that. After all, many, many pharmaceutical drugs were initially derived and synthesized from plants, foods, and botanicals. I am not sure about recent years, but chemistry is chemistry.
I do not participate in the stigma and hate toward you. Of course, I am only speaking for myself and my personal experiences. I know so many people who really have been poisoned and "screwed up" because their chemistry reacted very badly to certain medicines, causing extreme side effects that led to even worse conditions. I cannot speak for them. But I can speak for me. And all I can do is be grateful.
One day, I will taper down until I need only very small dosages of the drugs I am taking. That may be years from now. I will still need to take certain drugs for the rest of my life However, for the time being, I am perfectly fine with the pills I take. I cannot say that for anyone else - I am not anyone else.
I am always sad when I learn that so many other patients cannot handle certain medications or become worse due to negative side effects - that is horrific.
Yet as long as no one tries to convince me personally that my life would be better if I quit all my essential medications, I will nod and agree that we take too many prescriptions as a whole, and that negative side effects can be absolutely terrifying and can lead to worse problems. I wish there were more patients like me, who are are able to handle drugs without intense side effects.
And now I shall take the supplements that I take daily, to help balance the pharmaceuticals. Because the supplements work for me. And that is a completely separate debate for another post.

Oh, hell, might as well do that post now.
Depending on who you talk to, supplements and holistic medicine and alternative remedies are either the best thing and the only thing, or absolute bullshit and placebos. And then there are those who regard supplements as exactly that - supplemental. Alternative. Balancing. No big deal.
I grew up on vitamins and supplements, only being given pharmaceuticals when necessary. Now that I need to take over half a dozen pharmaceutical pills daily, I balance them as best I can with vitamins and supplements.
There are plenty of sick patients who are physically unable to take supplements and alternative treatments, as their bodies and brains completely reject or don't respond at all to said medicines. Which is why I bristle whenever someone insists that pharmaceuticals are all poison and only supplements and natural medicines are the way to treat illness. Nobody is the same. Everybody is different. What works for me may not work for you. People don't seem to understand this. People may never understand this.

And here, I submit a full list of every single diagnosis ever made in my life, and here I submit a full list of pharmaceutical medications and supplemental medicines, stored in both my Facebook Notes section and a document in Word.

Read more... )

And now, time for the daily supplements that I take daily because they work for me.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
In exactly one month, I shall be thirty-four. I am making a list of what I want, in case I forget.

http://www.zennioptical.com/210216-bendable-memory-titanium-full-rim-frame.html

http://www.amazon.com/Midnight-Blue-Light-Special-Incryptid-Novel/dp/0756407923

http://www.ulta.com/ulta/browse/productDetail.jsp?skuId=2244882&productId=xlsImpprod4320091

http://www.ulta.com/ulta/browse/productDetail.jsp?skuId=2244881&productId=xlsImpprod4320089

http://www.houseofbeautyworld.com/crcliobrve.html

http://www.groomerschoice.com/Bass-Wire-Pin-Medium-Oval-Brush/productinfo/BA9/

http://www.vitadigest.com/fbrushes-hairbrush-small-steel.html

http://www.beauty.com/nars-lipstick-trans-siberian/qxp327756?catid=12884&N=0

http://www.etsy.com/listing/45367735/key-lime-pie-all-natural-vegan

http://www.etsy.com/listing/106354450/morocco-natural-deodorant-stick-vegan

http://www.etsy.com/listing/116971871/live-enzyme-scentless-deodorant

http://bluefeathersoap.com/medicinals.htm

http://absilk.com/extremecream.html

http://absilk.com/ssbodylotion.html

http://www.swansonvitamins.com/swanson-ultra-ajipure-l-tyrosine-pharmaceutical-grade-500-mg-60-veg-caps

http://www.swansonvitamins.com/swanson-ultra-ajipure-l-tryptophan-pure-pharmaceutical-grade-500-mg-90-veg-caps

http://www.swansonvitamins.com/swanson-ultra-coq10-100-100-mg-100-sgels

http://www.swansonvitamins.com/now-foods-kava-kava-extract-250-mg-120-caps

http://www.tfsupplements.com/store/cart.php?m=product_detail&p=2746

I absolutely do NOT expect to get everything - but I do really really really want the blue perfect Zenni Optical eyeglasses and will find a way to buy them, unless someone plans on buying them for me (hey, I can dream). Also, I really want the Midnight Blue Light Special book and the Blue Feather Soaps Medicated Goo; and that's easy enough.
The TF supplement Picamilon is technically necessary - it may be a supplement here, but in Russia, it is an anti-depressant, anti-anxiety drug, created by Russian doctors. No, it does not intefere with my other drugs. It is Nicotinyl-Y-Aminobutyric Acid, a specific derivative of GABA and Niacin that crosses the blood-brain barrier and is used for mood enhancement, mental relaxation, and mental energy with focus. And it works for me. Thank you, Russia.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
Migraine migraine migraine MIGRAINE MIGRAINE NECK PAIN JAW PAIN NECK PAIN JAW PAIN SINUS PAIN.
FIBROMYLAGIA FLARE AND FOG AND ALSO MEMORY DISINTEGRATION AND DYSPHASIA AND HEMIPLEGIA AND ATAXIA AND THIS IS SO FUCKING STUPID.
Oh hello, pharmaceutical and nutraceutical medications. Please help me before I go insane. Thank you and I love you.
See? I'm not being poisoned. I'm not taking placebos. These pills are actually Doing Stuff. So, Dearest Lovely People Who Think Drugs Are Poison and People Who Think Supplements Are Useless: Fuck You, I Am Feeling Better. La la la la. I love you.

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