brightrosefox: (Default)
Yes, obviously. Sheesh.

http://m.huffpost.com/us/entry/6081918

Friends have been sharing this back and forth into repetitive boredom, so I'll just add: Yes, this is obviously a strategy I've been implementing for a while in order to manage my mental illnesses, it is totally part of a very very specific personal therapeutic ritual that will take at least another couple of months to complete, and for Loki's sake, this stuff takes time, quit asking if I'm better yet. I've only been ritualizing for three years; most of this takes at least five. Plus, I can't just magically fix damaged neural pathways by thinking happy thoughts. Most people spend decades in therapy, while their acquaintances urge them to fix themselves faster. The frantic urging especially comes from people who've never even been in states of extreme anxiety, clinical depression, endless chronic pain, obsession, compulsion, memory disintegration, traumatic stress, dissociation, depersonalization, derealization. I often hold back from just punching walls. Therapeutic ritual and mindfulness in mental artistry takes time and a large amount of control. I've only been doing it since 2011. By 2015 something will at least be, as they say, Fixed. At least enough to allow other treatments to fall into place. Until I finish that intense ongoing ritual, I'll keep on battling where battles must be fought.
brightrosefox: (Default)
...I do need to get an account of my own, mind you.

A friend posted this, so I'm sharing.

****

You need a (free) Medscape account to read this (you may, er, need to fudge a little about *technically* being in the healthcare profession . . . my opinion is that those of us who need to spend significant time managing our medical care are roughly equivalent to being at least *part-time* healthcare workers.) ;P

It's important to stay up-to-date on this, because medical continuing education programs don't necessarily require keeping up with specific disease criteria, and may be more general in nature -- plus, the trigger-point/tender-point exam has been around for so long, it's a matter of habit with some clinicians. You will be best-armed to manage your own care, if you walk into your appointments without assuming that your doctor is necessarily knowledgeable about the *most* recent research.

"[T]he 2010 criteria was to create diagnostic criteria that were more user-friendly for clinicians to use in practice— for example, reliance on the tender point exam, which we know may be incorrectly applied in practice and be misleading in suggesting that FM is primarily a muscle or tendon problem as opposed to being primarily a problem with sensitization and dysregulation of the CNS. The new criteria rely more on pattern recognition of the constellation of chronic widespread pain along with other characteristic features such as fatigue, sleep disturbance, cognitive dysfunction, and irritable bowel symptoms—symptoms that may occur either as an independent entity or in association with other chronic illnesses such as rheumatoid arthritis or osteoarthritis."

http://www.medscape.com/viewarticle/831471

Also, a recent study has shown that fibromyalgia patients process multiple types of sensation differently, not just pain sensations:

"Brain scans of patients with fibromyalgia showed that they processed nonpainful stimuli, such as sound and touch, differently than the brains of people without the disorder. This may explain why patients often complain of hypersensitivity to sensations in everyday life, author Marina López-Solà, PhD, from the Department of Psychology and Neuroscience at the University of Colorado, Boulder, told Medscape Medical News.

"What we wanted to know is whether in fact there was something in the brain that would account for these feelings in response to stimulation that is not painful in nature," Dr. López-Solà said. The study, published online September 15 in Arthritis & Rheumatism, used functional magnetic resonance imaging to show that patients with fibromyalgia processed visual, auditory, and tactile sensations with reduced brain activity in primary sensory processing areas, combined it with higher activity in sensory integration areas such as the insula, compared with individuals without fibromyalgia."

http://www.medscape.com/viewarticle/831831

Please feel free to quote and repost anywhere -- just please don't attach my name to it, since I don't want to lose access to *my* Medscape account. Thanks!

***
brightrosefox: (Default)
Well, that was a thing.
The day before, I almost lost part of my right ring finger. I blame lack of awareness (duh) and spasticity. See, usually after I use the hand mixer for my cocoa coffee concoctions in my particular pitcher (take that, coffee frothers), when I wash it I submerse it in soapy water and let it spin. But this once, I accidentally had my right hand right near the spinning blades. I was holding the handle in my left hand (I know, I know), which suddenly spasmed (I know, I know), and then my right hand spasmed (I know, right?) and suddenly my third finger had touched a blade for a nanosecond before I lifted my left thumb off the button.
Nanoseconds are long when you're getting wounded.
And so, there's a tiny chunk missing off the very tip, to the right of the nail. I am absolutely amazed that's all that happened. Sloppy Luck wins again. There are enough layers of skin missing that the tiny circular wound was seeping serum after the bleeding stopped (which took a while). It now looks similar to a third degree burn.
(I have a picture. Wanna see?)
Adam, who was in California and AV teching a meeting when I called for first aid advice, said that anything deeper than a quarter of an inch would require stitches (we resorted to texting; he was surprisingly calm, but I am exasperating on a good day and he's a former EMT who has broken and flayed all his fingers over time, so). And that got me thinking about what I would do if I were alone and really injured. And I realized that in a serious major thing, my only chance, aside from the Comcast security camera dealie, would be to make friends with one of the townhouse owners right near me and call them to drive me to a hospital. There is Nicee, who has already told me that in an emergency, I could lean my head out the window and scream her name and she would come over from her place just around the corner. But I forget if she has a car. Damn, I need to go over there. She's usually out on her front walk smoking when I go for the mail. Other than waving hello and chatting, I don't remember which house is hers. Fuck. I'm screwed. I don't know why I haven't made friends with most of my neighbors since 2005.

Anyway, I can't find the specific finger bandages, so I've been using regular Band-Aids. And doing that with fingertip injuries is really fucking annoying.

When I took my shower, the bandage had to come off... but the worst thing was that I got soap in the wound. Meh.

Also, ring fingers are important. Especially when you have spastic hypertonia affecting one hand and the hand that is injured is your good hand. Good thing I taught myself to type with my first two fingers on both hands.
brightrosefox: (Default)
This is especially for[livejournal.com profile] naamah_darling because it talks about how powerful and precious internet communication is especially for disabled people.

http://palsycorn.livejournal.com/2269.html

She is one of my dearest friends. We met on a Facebook support group for people with cerebral palsy. She is the creator and head moderator and she is amazing. She is studying Disabilities Studies in college, she adores SF/F and is writing several stories and at least one SF novel with disabled superheroes, and she is the reason I am so down with being a crip, cripple, "ceep", etc. I love her.

Quote:

"I am a multiply disabled person. Phone calls require a type of mental, physical, and emotional gymnastics for me, which I seldom, if ever, have the spoons for. I have severe phone anxiety which I smash down and stuff deep inside me when I absolutely have to make a phone call. The anxiety is managed somewhat with the help of scripts (particularly helpful if I have to call to make an appointment or something, I write down exactly what I'm going to say, and approximate what the other person is going to say), and has gotten slightly better since the advent of cell phones (that way, I know that no one other than the person I want to talk to will pick up). But it is still VERY there. On top of this, I have to smash a phone against my ear and fight not to drop it, something which I do with alarming frequency, because my hands do spazzy things. This phone, which is usually supremely uncomfortable, because no one considers how it's going to feel when it's held against an ear when they make a cell phone, will have to be nearly glued to my ear for however long the call takes, requiring my arm to be held in an awkward position for that long, which, like most things I do with my body these days, will result in pain. Finally, phone calls require communicating verbally, and like many people with CP, I find it exhausting to coordinate the muscles needed for speech and still make my words clear enough to be understood. Put that all together and you start to see why I feel like I've ran a marathon after a long phone call."

YUP.
brightrosefox: (Default)
Yeah. The snow and snain and slush was all worth it. I got to the CVS pharmacy and back by bus without incident. Plus, a free battery operated shaver thanks to CVS Reward Dollars and coupons (I may never need to balance painfully on one-legged in the shower again).
Ah, snow, you've arrived. This part is cool with me. You are soft and powdery and easy to shovel. No ice just yet. You're barely a few inches. I can hobble and wobble and limp and stagger easily.
You see, snow, I don't actually hate you. I only hate your frozen ice parts. The part that really hurts when I slip and crash. See, at least right now you are still powdery and cushiony enough to help me land softly.
I don't hate snow... we just don't get along.
Now I must decide if I want to take the bus to the pharmacy now or tomorrow. I don't know if it matters anymore. These particular refills can wait a couple of days.
Also, whoever invented those magic gloves that let you use your smartphone must have known about Raynauds Disease.

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

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

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

Speaking of scent, Adam got me a bottle of perfume during his Las Vegas job trip a couple of months ago - Nude by Rihanna ("Fruity aromas of guava, mandarin and pear are located at the opening of the composition. The heart is blended out of white flowers: gardenia petals, velvety Sambac jasmine and creamy orange blossom. The base consists of sandalwood, vanilla orchid and "second skin" musk."). We both love it on me. Sweet and soft and floral and deep. Now I really want Killer Queen by Katy Perry because it is a fruit and flower explosion ("Top notes include wild berries, dark plum and bergamot accords. The main note of the heart is velvety red flower, Celosia, but there are also Sambac jasmine and rainbow plumeria. The base contains cashmere, patchouli and liquid praline"). Oh, indeed.
My personal signature scent, created via Etsy, called Moonlight Witch, consists of real pure extracts Amber, Blue Lotus, Dragon's Blood, Coffee, Chocolate, Green Tea, Coconut, Frankincense, Myrrh, Blood Orange... but I do love exploring various notes and scents when I can.
brightrosefox: (Default)
I went physically to the local Social Security Office this morning just to make sure they were processing my Medicare Part B request.
They said everything will kick in come December 2013. And that while my December SSDI check would come minus the Medicare monthly premium, they would retroactively date it all back to the beginning of November. As soon as I get my new Medicare card, I can call Medicare-Aetna, get my Part C in place, and have everything done. Part D will be included in Part C. I have already checked with Medicare Aetna and all my doctors and my pharmacy, and all will be accepted. Then, once I've made absolutely positively certain that things are in order, I can cancel this expensive private CareFirst insurance, switch all my doctors and prescriptions over to Medicare and Medicare Aetna, and save nearly a hundred dollars a month.
*Fluttershy YAY*
And here I was worried it would be too much of a terrible hassle.
Wait - knock on wood. It's Medicare. Breathe. But, I mean, none of my medications nor specialists fall outside of that... that... what's it called... that area where they go "Ehhhnnn, this might not work." Everything looks great on my end.
*Fluttershy YAY?*

Also, I have a Twilight Sparkle Beanie Baby.

Adam has off tomorrow, after working hundreds of hours in the past two weeks. If I feel up to it, I will go with him to Annapolis to see Mikey, so we can go to the school and give Mikey his very own smartphone and headphones (my old Galaxy S3 that got waterlogged and then magically fixed by Adam), with audio books and piano keyboard apps and all that. Anything to help my beloved brother-in-law communicate a little louder, since he is non-verbal and has so so much to say.
If I don't feel well, Adam will go alone. If he does, I'm hoping he will stop at the Donut Shack. I'd make a list of flavors. But I should be okay to go. I miss Mikey.

We've made our Thanksgiving plans. Once we get our house-sitters settled, we will go to Long Island, The East End, Suffolk County, The Hamptons, Southampton, Sag Harbor, my parents' house. And we will rest and relax and I will gorge on New York water, New York pizza, New York bagels. Oh yes.
brightrosefox: (Default)
I found my long missing charoite bracelet! It makes me happy. Especially when nestled next to one of the lepidolite bracelets. So now the gemstone jewelry count is: Two amber bracelets, two lepidolite bracelets, one multi-colored charoite bracelet, one multi-colored tourmaline bracelet with a lotus charm, one kyanite bracelet, one sodalite pentacle with clear quartz center wrapped in copper, one amber ouroborous pentacle, one large charotie copper ring, one charoite lapis lazuli copper ring, one triple turquoise ring, and an amber copper ring. Aside from the green-gold Celtic knot wedding ring, my ancestor's simple gold wedding ring, and the rose gold blue-white diamond bezel set engagement ring. I also have a lepidolite quartz nickel pentacle that I use separate to massage sore muscles. I'm cool with all that.

I see my gemstones kind of like some of my medical supplements, anyway. They work, they help. Sometimes not. It's okay. They're worth it.
brightrosefox: (Default)
Oh, damn. I forgot to celebrate my first SSDI Approval anniversary on July 10th. Eh, better late.
Besides, as of August, I'll have my Medicare Part A activated - and I did turn down Part B, because I like Carefirst too much.
I hope I made the best decision for now, since it's not like I am so bad that I am constantly in and out of clinics and such. Right?

http://brightlotusmoon.livejournal.com/2012/07/10/
http://brightlotusmoon.livejournal.com/2012/07/11/
http://brightlotusmoon.livejournal.com/1530741.html

Also, I have so many random head and face pains. It could be so many things. Migraine, eye strain, neck pain, tension headache, dry sinus, jaw pain, cranial nerve pains, bone issues. Last night it was so excruciating I couldn't sleep. Finally, after Adam helped me with Reiki and massage, I muttered something about "dammit, taking drugs now" and got my two strongest prescriptions: Soma and Codeine/Tyenol. At 12:45, I swallowed them down with sea buckthorn oil to hide the taste and coffee to also mask the taste. I woke up again at 1:45 and there was some mild improvement, like some of the ice pickers had packed up and gone home. At 2:30, I glanced at the clock and realized that there were only a couple of little sharp, shocking stabs here and there around my nose and cheeks and skull, and I could live with that. I didn't even hear Adam's alarm at 7:30. I slept straight through until noon. Rose lay herself on my torso and nibbled my cheeks and jaw and licked me. Then I fell out of bed using the cane nearby, took my necessary pills (pharmaceutical and supplement) with that amazing cold-brew coffee with almost no acidity, took a long very hot shower, took more Soma and Codeine with Klonopin, stretched very very gently, and realized I would be okay to look at a computer screen for a couple hours at a time. Good.

I always knew it would get much worse and that I would fall so hard. But at this point, I don't even notice. The feathers are heavy but soft.
brightrosefox: (Default)
And this is the thing about major depression that many people don't realize, understand, or believe.
You can really, actually feel a kind of happiness, you can laugh and joke and feel uplifted. It's just that sometimes it feels horribly fake to you, or that once it's all over you feel shame and guilt and worse sadness.
When they say laughter is medicine, it is absolutely true. But when you are in a clinical depression episode, laughter can often feel strange and uncertain and alien. I do it anyway. I have to. I find things to make me laugh. I ask people to tell me great jokes. I look for hilarious things on YouTube, like this one, a filk mock-up of "Hey There Delilah" called "Hey There Chthulhu" - certainly brilliant. https://www.youtube.com/watch?v=ut82TDjciSg
Or maybe those mock-ups of songs from Portal the game (which I've never played). https://www.youtube.com/watch?v=4U_RvUYINpo

And naturally there are my favorite television programs, the ones that make me laugh, comedy or not.

The important thing for me is that during an episode, I try to keep my mood as elevated as I can. Because sinking deeper and deeper makes it so much more difficult to feel better, to get well, to recover, to treat myself, to get help. Even just writing reminders to laugh at certain things can help me.

But above all: Yes, you can laugh and be social and be happy while depressed. What happens on the inside various from person to person. I can only speak for myself.

Migraine and fibromyalgia flare can't help. Bah.
brightrosefox: (Default)
bluelotusglow

bluedarklotus

bluelotus4

***
You lift your head to ask if this is a dream. She presses her finger to your lips and smiles. As she gently places the shining blossom into your outstretched hands, she whispers, "This will be safe inside you. Together, you will understand." You want to ask her everything, but you know you mustn't. She kisses your lips and stands tall. Raising her arms, she fades slowly. The air is filled with the scent of the sacred lotus. You press the flower to your breast and it vanishes, sinking inside you. And you begin to understand.
***
You find her in the swamp itself. This time she is wearing faded denim shorts and a sleeveless top, muscled abdomen and arms well exposed, bronze skin glistening. She is knee deep in muddy water, examining each blossom with careful fingers. She looks up at you with bright green eyes and smiles widely. Her hair is blacker than the darkest muddy water, tied back with satin. She looks so young and so old.
"Are you here for another one?" she asks. "Never mind, of course you are. Hold on. I need to find yours." She moves slowly, dipping her hands in up to the wrists until her skin is masked in mud.
"They're sleepy today," she says. "Here, talk. Ask which one wants you and I'll take it."
"Do I have to come into the mud?" you ask, preparing to remove your shoes.
"No, no, just call out. They'll hear you even far away."
You take a deep breath, focus on the flowers floating all around the woman, and say, "Dear blossom, come to me." You aren't sure if that will work. But then the woman nods. She tilts her head one way and the other. She turns around and walks a foot, then slowly bends at the knees and carefully scoops up a richly pink lotus that looks exactly like all the others. She whispers something, and the flower begins to glow. Grinning, the woman walks out of the swamp and holds out the flower. "Perfect!" she says. "Instant connection. Good job."
You cup your hands and she slides your lotus into your hands. There is a small amount of mud; it feels cool and refreshing, with a slight tingling. The lotus shines so brightly that you need to squint, and it disappears into your hands, under your skin.
You blink at the woman. "So that's it?"
She smiles. "Nope. Never. But you're learning more as you go. I'll see you when you're ready to come back. You'll know where I'll be."
You want to ask something, something important. You have forgotten. You just feel blissful. You reach out, and she hugs you tightly, burying her face in your hair. You rest your chin on her shoulder. She smells like lotus and frankincense and pure joy.
"I'll come home soon," you murmur. She just nods. Nothing else needs to be said.
***
The lotus flowers are in full bloom, all of them. You stand naked and waist deep in the swamp, surrounded. The blossoms and glowing gently, swimming around you. Your guide is nowhere. You cannot call out, or speak, or even whisper. You draw in a breath. A small pink petal floats on the air toward you and presses itself on your tongue. No, you think. I must not speak. You are crowded by flowers. Instinct speaks, and you fall back until the lotus flowers catch you. You are floating on a shining bed of full lotus blossoms. You are covered in tingling mud. You open your mouth and light streams from it. A single whole flower lifts and slowly flies to you and settles gently in your mouth. You breathe in very slowly, and the lotus becomes pure energy that pours down your throat like a refreshing drink. You close your eyes. Everything makes sense. You are everywhere. You begin to laugh, but you do not know if it is in your mind or through your mouth.
"There you go!" says a familiar golden voice. "How do you feel now?" You open your eyes. You cannot stop laughing like a child. The Lotus Woman has eyes that cycle through every shade of green, and you find it fascinating. She reaches for you, and you reach for her. She scoops you up and carries you to a heated rock beyond the swamp. There are clothes waiting for you, folded on another rock. The Lotus Woman helps you sit up. She produces a wood brush and slowly combs your hair, letting the bright, bright sun dry the muddy water away. She carefully rubs you down with a towel that feels like silk and cotton. You look at her, finally, and notice that now she is wearing a red sundress that moves like water, with boots polished like mirrors.
She finishes smoothing you down and helps you into undergarments, blue slacks, a red tee shirt, and boots similar to hers.
"We're going to the healing room," she says, "if you'd like. There will be oil massage and saunas and showers of all kinds. Now that you have your next lotus, I think you'll appreciate the new magic."
You just feel so much bliss, so much joy, so much euphoria, that you only nod and smile widely. She taps her finger on your nose. "Now, don't get excited. That'll fade. We need to make sure it doesn't overwhelm you. It's supposed to become part of you, remember?"
Licking your lips and taking a deep breath, you say, "Yes. I'll remember." Your voice sounds like small bells inside your head.
You hold the Lotus Woman's hand and shield your eyes from the sun with your other hand. She is leading you far from the swamp, but it is all right. You will be back soon, of course.
***
It is the way she looks at you, with that quirky smile and those gleaming dark green eyes.
You hold out your cupped hands, trying not to tremble, trying not to disturb the velvety white lotus nestled against your fingers.
"Is this your gift to me?" she asks.
"Yes," you say. "You have helped me so much... and I know you always have these, but I found this one right where I live, and, I mean, I know they're so rare, but..."
She holds up a hand, smiling so widely. "It's okay, sweetheart. I understand." She very carefully takes the lotus from you, holds it to her lips, and kisses the petals. "Thank you. It's perfect."
"Maybe... maybe tomorrow," you say shakily, "we can go to the swamp and... you know... talk to the other flowers?"
She tilts her head and her eyes fill with compassion. "Oh, darling," she murmurs. "Don't be so nervous. There's no need to be shy. This is your world. We will do anything you wish."
You nod, your throat thick with tears. You have no idea what to say next. You realize you don't need to say a word. You watch as she holds your white lotus gift to her breast, and you watch as the lotus turns into golden light, and you watch as the lotus melts into her bronze skin, and you watch as she draws a deep deep breath, exhaling into the sky. Suddenly, you feel a massive weight lifted, spiraling away from the top of your head. Energy fills you starting at your feet and moving in a rush until it reaches the same top of your head. You feel absolute and complete ecstasy, euphoria, tranquility, and serenity. You draw a deep deep breath, exhaling into the sky. You want to laugh, so you laugh. And she laughs with you.
You feel how deeply the universe lives inside you. You laugh, and you embrace everything you can reach, until you feel yourself glowing. You dance and dance, and she takes your hands and joins you, and the universe dances with you.
***
This time, you are standing ankle-deep in a swamp at midnight. Everything is glowing blue - the sky, the water, the lotus flowers, your skin.
The Lotus Woman is sitting in front of you, cross-legged, surrounded by blue and white lotus blossoms all in full bloom. Her bronze skin, her black hair, her green eyes... everything about her is shining with pale blue light.
You feel comforted and serene in a way you have never known at such a deep level. You carefully sit down in the same position, letting the mud flow against you. You and she are both dressed in shorts and sleeveless tops, no shoes, your hair both unbound. The mud sinks effortlessly into your skin.
Neither of you speak. After a few minutes, one lotus blossom floats into your lap, white and blue and covered in dew drops. You very gently pick it up and it dissolves into your skin with an intense burst of blue and white light.
She grins and laughs, clapping her hands. "Oh, yay! I was hoping you would get that one. It's been waiting for you."
You smile and shrug. "I guess I've been waiting too."
The dozens of flowers float and spin around you both, several touching your skin and her skin, merging with you in tiny light bursts that feel like soft winds. She holds out her hands and you reach out and you grasp them tightly.
You don't know how long you sit and meditate, but it doesn't matter. Forever can fit inside a single moment, after all.
The white and blue lotus blossoms swirl around you, lifting your soul, until the entire world is filled with light, and you feel completely at peace, bursting with serenity.
***
brightrosefox: (Default)
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.
brightrosefox: (Default)
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.
brightrosefox: (Default)
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.
brightrosefox: (Default)
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
brightrosefox: (Default)
Reposted from Facebook, because dear mighty Isis, I am so exhausted...

***

*giant sigh*

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

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

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

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

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

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

I love you all so, so much. Thank you for caring about me. Just please keep in mind that my health issues are between me and my physicians. Thank you.
brightrosefox: (Default)
OMG WTF LOL TMJ.
In conclusion, I have a migraine and I've been massaging my jaw and trying to stop clenching my teeth.
Hail Soma, Ultram, Baclofen, Picamilon, Shilajit, and Ashwagandha.

Also, note: One complex partial seizure, around two this afternoon. I kept scratching my arm with a pen, unclicked, just the plastic. That's all I remember. Hello again, Alice. Post ictal state is not so bad. I am a little drained and like a wounded wildcat in a corner and will probably growl at anyone who tries to start a debate about my health treatments, but otherwise I feel fair.
brightrosefox: (Default)
Stuff I want in 2013:

Intangible/Psychological:
Improve my brain.
Allow myself to work with my crazy rather than against it.
Temper my specific particular OCD, depression, and anxiety issues, and realize that it all must be treated as a severe illness that can be healed.
Be here now.
Be more self aware and less self absorbed.
Stop myself before making rash, unnecessary decisions.
Realize I have what I need and want and only take more when it is truly necessary.

Tangible/Physical:
A Samsung Galaxy S 3 smartphone. My ATT contract will allow me to update in July, so I must be patient.
Money to get another hair coloring at Ulta with Redken Chromatics.
Putting more money into savings, just like everyone else.
Read all the books I haven't read yet.
More healing exercises, stretches, massages, etc. I do what I can.
Write. Write. Write. Write. Write. Write.
Finish everything I write.
Be proud of everything I write; know I will be a success.
brightrosefox: (Default)
Good things: Taking 20,000 mcg (20 mg) of Biotin at once every day really does help with healthy hair and nail growth for me. Not necessarily longer growth, just better, healthier, stronger, shinier growth, which will in itself help with longer growth in the long run, and I did not mean to sound like a commercial, sorry.
(Disclaimer: I do this for myself because it works for me. If you want to try it, have fun, just do your research. Although, Biotin - aka B7 and BH - really is an awesome vitamin and gives me lots of anti-fatigue energy and helps lift my depression slightly.)

Also, NAC, N-Acetyl-Cysteine. Good for boosting my energy levels and such. And I was recently told it may work as a supplement for OCD, ADD/ADHD, mild depression, anxiety, bipolar, respiratory problems, and memory problems.
(Disclaimer: I do this for myself because it works for me. If you want to try it, have fun, just do your research.)

It is very important to put disclaimers on every supplement and holistic treatment. Because they do not always work for people. Some may not work at all. But I will only talk about stuff that works for me. If other people want to try it, they are free to do so, and I'm happy to answer questions, but I will never be one of those "holistic proselytizers" who insists that everything is awesome. I'm still not sure about the whole "water homeopathy" even though I take homeopathic tablets like arnica and ignatia in tablet form all the time and they work wonderfully, so I'll say I like homeopathy in non-liquid form, I guess, I don't know, I just know something works. Anyway, every body is different always all the time forever so nobody make fun, please.

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