brightrosefox: (Default)
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.
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."

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."

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)
Really, that's all I wanted to say. The physiatrist prescribed twice a week sessions for an hour and a half. My therapist, Michael, looks like a cousin of actor Jensen Ackles. We are doung slow gentle sets that engage all the muscles in my lower back, pelvis, and thighs.

Also, the Zanaflex has been fantastic.
brightrosefox: (Default)
Hello, Zanaflex. You definitely seem to be a great replacement for the baclofen. I think we shall get along splendidly. (Oh, I hope I won't have to add disclaimers about organ tests and knowledge of organic chemistry and pharmacology. That got annoying on Facebook.

Posted via

brightrosefox: (Default)
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?
brightrosefox: (Default)
Thanks to another trip to Michael's craft store, I have a new set of Faber-Castle Pitt artist pens below Fine, and Calliope has a Beanie Boo dolphin to cuddle, which she has been doing. I have an owl, which seems to work well as a knee pillow.

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

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

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

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

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

So, my fellow chronically ill and disabled folks, how do you react to such a comment? Is it an insult or backhand compliment for you? Is it a lovely compliment? Do you view it differently when it is said by other chronically sick and disabled people as opposed to able-bodied people?
brightrosefox: (Default)
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:,,, 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.)
brightrosefox: (Default)
Oh, hey, my long lost theme song.

Gracefully she's circling higher
She has the wind beneath her wings
And looks down on us, she said

Robbed of my innocence
Had no more time to play
I sure got my feathers burned
But I'm stronger than the flames

Here she comes, here she comes
I've been waiting for so long
Here she comes, rose again from the flames
My little phoenix

Eternity is set in her eyes
Throwing sparks back at the world
That'll never die and I think

She was robbed of her innocence
Had no more time to play
She's only a little girl
But she's stronger than the flames

Here she comes, here she comes
I've been waiting for so long
Here she comes, rose again from the flames
My little phoenix

Here she comes, I've been waiting
For my little phoenix

You've got to get close to the flame
To see what it's made of
You've got to get close to the flame
To see what you are made of

Here she comes, here she comes
I've been waiting for so long
Here she comes, rose again from the flames
My little phoenix


This reminds me, fascinatingly, of chronic pain, invisible illness, mental illness, disability, and the struggles of marginalization for a bodymind that is full of monsters.

Phantom voices with no words to follow
At the mercy of the cold and hollow
I withdrew into my sanctuary of silence
My defense

In this moment I am just becoming
Liberated from my cell of nothing
No sensation there was only breathing
Overcome oblivion

Falling Awake
From a walking sleep
And all that remains
Is the dying memory
And now I can dive for
These dreams I make
Like I am Falling
I am falling awake

Waves of melodies once forgotten
Like a symphony across the ocean
Never knew that they could hear my calling
Deep within
Crashing in
Rushing in
Like falling

Falling Awake
From a walking sleep
And all that remains
Is the dying memory
And now I can dive for
These dreams I make
Like I am Falling
I am falling awake

There is no returning to that emptiness,
The dream that lives inside of me
Won't fade away, it's wide awake

Falling Awake
From a walking sleep
And all that remains
Is the dying memory
And now I can dive for
These dreams I make
Like I am Falling
I am falling awake


And this one, same thing:

Whenever I wake up
I'm lost and always afraid
It's never the same place
I close my eyes to escape
The walls around me

And I drift away
Inside the silence
Overtakes the Pain
In my dreams

I feel Immortal
I am not scared
No, I am not scared
I feel immortal
When I am there
When I am there

Whenever I wake up
The shards of us cut within
Always the same day
Frozen all in the fringe
I surrender to the sleep
And leave the hurt behind me
There's no death to fear
In my dreams

I feel Immortal
I am not scared
No, I am not scared
I feel immortal
When I am there
When I am there

So far or right beside me
So close but they can't find me
Slowly, time forgets me
I'm lonely, only dreaming

I feel Immortal
I am not scared
No, I am not scared
I feel immortal
When I am there
When I am there


And for my new friends in disability and invisible illness, I present my number one theme song.

Smash glass against the wall
Curse the music on the radio that the neighbours play.
Door slams, she turns her head
Watches through the window as he pulls away
Funny how your racing brain drives you so mad
When all the while you feel so numb
Too old to be clean far too young to be broken
Like an army we come

Cut back, left behind
I watched you self-destructing oh so many times
Shot down, once again
Sitting in a chair crying what am I going to do with my life?
Just learn to hide the way that you really feel
Never let them know that you're scared
But understand that you're not the special only one
Watch us now, watch us real close

How we all dance with this fire 'cause it's all that we know
And as the spotlight turns toward us, we all try our best to show
We are lost we are freaks, we are crippled, we are weak
We are the heirs, we are the true heirs, to all the world

Let's go build a fire down on the empty beach when the waves are crashing high
White heat purify, as the sparks fly up into the great black sky
Sacrifice these crutches to the crackling flames
Stand as silhouettes against the dawn
It's far too late to try to sleep now, seems I'm never tired any more

I want to dance with this fire 'cause it's all that I know
We are lost we are freaks
And we try our best to show
I am lost
I'm a freak ha ha.


Depression Monster is still wrapped around me, steel claws and silver grin, but I am fighting and fighting, and I have many spears.

Husband returned from New Orleans around one-thirty this morning. Rose and Jupiter immediately climbed on him and we all fell asleep in a snuggling pile.
Later today, errands! Petco Unleashed with coupons for Blue food and litter. Trader Joe's for cookies, whole milk yogurt, chocolate hemp powder, trail mix, pumpkin cereal bars, fairytale pumpkins. Dollar Store for calendars. H-Mart for produce and foods from outside North America.
Had a lovely chat near the with from a guy who was from Jamaica, who extolled the virtues of awesome iron-rich burro bananas and said that his grandmother, who ate them every day on The Island, was 130. She probably did lots of things. The man himself looked barely 40 but he could have been 50. I asked him which bunches of burro bananas looked best. Yay, snacks.
And we got a pure honey nut spread, roasted seaweed snack packs, tamarind paste, demerara sugar (4 lbs for under 5 bucks), black plums, pomegranates, red leaf lettuce, and stuff I forget now.
I have taken more medication to ease this pain, I have meditated with cartoon comedy to beat back the Depression Monster, and I now will get back to writing.
brightrosefox: (Default)
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.


Hyaluronic Acid
Magnesium Citrate
Apple Pectin
Bamboo Silica
Passion Flower
Proteolytic Enzymes
Yerba Mate
Cayenne Extract
Royal Jelly
Oregano Oil
Chromium Picolinate
Goji Berry
Noni Berry
Ascorbic Acid
Vitamin D
Cat's Claw
Devil's Claw
Pau D'Arco
Sea Buckthorn
Magnolia Bark
Raspberry Ketones
African Mango
brightrosefox: (Default)
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:
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.
brightrosefox: (Default)
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.
brightrosefox: (Default)
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.
brightrosefox: (Default)
Hey. Hey, you. Self. Body. Brain. Person. Yes, you. This is why you require medication every day. Now stop taking ten minutes to type a single sentence and go take your pills. Also, good, you ate food. Now go make oatmeal and store what you don't eat in the refrigerator.
brightrosefox: (Default)

So, I wrote a review for a dietary supplement, and I'm going to post it here just because.

"Between my mid to late twenties, I was diagnosed with epilepsy, fibromyalgia, major depression, multiple anxiety disorders, and a joint pain disorder. It was a lot to take in, especially since I already had mild cerebral palsy from birth. My parents had raised me on supplements and alternative medicines, and we took pharmaceutical drugs only as needed. Unfortunately, this time it was desperately needed on a permanent basis for me. I was fine with it, as I have always believed in a good balance of all medical treatments.
Anyway, soon after the fibromyalgia diagnosis, a friend studying Ayurvedic medicine suggested that I start taking Shilajit. He said it might help ease some of my symptoms, boost my energy levels, and help me work with these illnesses. He sent me to Tattvas Herbs, which he personally used.
I naturally knew that no supplement works the same for everybody, so I bought one bottle, which was shipped extremely quickly, so I was able to start right away. I began by taking two capsules every morning with milk (both dairy and nut), making sure to wait an hour before taking my morning pharmaceutical pills. After about one week, I started feeling a little more energy, a little less pain, a little less discomfort. My joints became a little more flexible, my migraines became easier to deal with, and even my depression and anxiety episodes became lighter. I even began having fewer seizures. I was amazed, but careful - this wasn't a panacea, but it certainly was fantastic and didn't interfere with any of my other medications.
I finished the bottle after a month, but then I just stopped thinking about it. It has been almost three years, and since the beginning of 2013, I have started taking the Tattvas Herbs Shilajit again. The improvement is remarkably noticeable. It has definitely taken a while, but the Shilajit works extremely well to ease some of my worst symptoms during flares and episodes, it honestly does. In fact, I had been having severe episodes of fibromyalgia and depression, and I began to feel better one week after restarting the Shilajit capsules.
I have three bottles currently, and I plan on taking one capsule every morning for as many years as I can. I really feel that Shilajit works wonderfully for me, and this brand in particular is excellent. The supplement really does what it claims, which is always lovely. Looks like I will probably be taking shilajit gladly for as long as I need."

I'd add a disclaimer, but by know I think all my online friends and acquaintances know the disclaimers by now.

brightrosefox: (Default)
Also, everything still hurts so hideously that the pain has still gone from "ten" to "indescribable" to "Lovecraftian." And also I recently had a small seizure that involved some sort of sobbing similar to the cries of a wounded young kitten. I wish I remembered more, but there were only colors full of dark, and more pain, and there was howling in the abyss, and there was a woman holding me and singing until I came awake. Probably my inner pain guide creation, Serena; she's good like that.

I really must sleep.
I really must stop hurting first.
One will happen before the other, of course. Eventually.

Other things:
On our way back to Gaithersburg, the car broke down eighty miles from home, in Aberdeen Maryland near Bel Air. Adam managed to coast to the shoulder on I-95 and guessed that the transmission or possibly the torque converter had died or failed. After several desperate calls, we wound up calling Triple A, signing up, and waiting for a tow truck. The plan was to get towed to the local mechanic, have Billy meet us there with the SUV, and then pack everything into the SUV so we could get it all home. It all went well. Adam has tomorrow and Monday and Tuesday off, thankfully. The mechanic, Bill, won't be available until Monday, which means that Adam may need to borrow a vehicle from his boss for a few days, unless Bill can fix the problem quickly. We can pay for a new transmission if needed, and we can even try to buy another used car if it desperately comes to that, but Cloud is a such good car - a 1999 Ford Taurus station wagon with very few miles - and we don't want to give her up. Come Monday, we will learn her fate, and hopefully she will be fine. If not... sigh.

Other than that? My week was amazing. Spending all that time with my parents in their house full of art, made of art, breathing art, soaking up art... Dad gave us two of his older paintings from his 1970s surrealist period, plus a seahorse and oyster shell with a real pearl carved into dark slate. Everything was an extraordinary gift. My family's love is an extraordinary gift.
brightrosefox: (Default)
Also, I am on slightly higher doses of drugs to ease the migraine, the anxiety, the OCD, the ADD, the potential return of depression and seizures, the spasticity, and the dreaded lumbar pain. So if anyone tries to talk to me, my voice or fingers may argl blarg wagl mluh. Just a little.

Feels amazing, though.

See, this is what happens when a person with true chronic pain takes her medication in proper doses when she actually needs the higher doses that were recommended by doctors. As in, "if you need a second dose, please take that dose, and don't try to pretend you can just push through your major chronic pains, because I have prescribed you these drugs at these doses at these pill amounts for a reason, which is for pain. It's fantastic that you take alternative remedies, but if you need these pain drugs which I have prescribed, you should probably take these pain drugs which I have prescribed, especially at the suggested dosages, and damn anyone who scolds you." (Seriously, this was what my pain specialist nurse told me, word for word.)

As holistic and supplemental as I prefer, I will punch anyone who accuses me of being potentially addicted to pharmaceuticals, since without them I would be screaming a lot. So, yeah, I love you, don't make me punch you. I am still hoping for telekinesis.
I'm off to take some supplements too, by the way. I hope that makes you happy.
brightrosefox: (Default)
Adam is home. At least until Saturday, when he may be off to Chicago for another job. Ahh, the life of a field computer technician and IT/AVproject manager. On Friday, we go back to his Kaiser Permanente doctors for follow-up appointments, and then... who knows. A couple of days off is lovely, though. Now that I'm on Disability, there might be more opportunities for me to come with him on jobs in the future. That would be sweet. Charlotte would happily look after the cats, which will always be my concern when we're away.

Exhaustion levels are still very high. Appetite is still poor. I did eat three small pieces of Adam's pizza made completely from scratch, and they were delicious, but my stomach is now crying over how full it is. Maybe it shrank. At least I am eating something, right? At least the anorexia scars haven't opened, right?

So many books that still need reading. I got distracted from John Scalzi's "Redshirts" when Charlotte insisted I read the newest Sookie Stackhouse book that she'd bought. I hadn't realized how little of "Redshirts" I had read. I am still trying to finish "Trance" by Kelly Medig and the long-awaited "Ashes Of Honor" by the awesome Seanan McGuire. And then there is the "Shadow Falls" series by CC Hunter, "Endlessly" by Kiersten White, "Bloodlines" by Richelle Mead, a few HP Lovecraft books, "The Folded World" by the wonderful Catherynne M. Valente, and the "Clarity" series by Kim Harrington. Not to mention "Sex, Drugs, Einstein, & Elves" by Cliff Pickover and "The Untethered Soul" by Michael A. Singer. And the Kindle For PC books, like "Team Human" by Justine Larbalestier and Sarah Rees Brennan.
Oh, my beloved books. So many of them. And my own speculative futuristic paranormal fantasy novel, which is almost finished, if I could just get past the lesser scenes to the larger scenes. The lesser scenes are always important to provide just enough information, since this is such a big book and I am not writing any direct sequels.

Ah, the Baclofen is working. My left arm has blissfully stopped spasming. And I'm not even tired, not even as a side effect. I love you, Baclofen, almost as much as Soma the great pain killing muscle relaxer.

Adam is downstairs in the living room, on the awesome couch, playing Playstation 3, and it's all good. As long as we are in this little townhouse together, as long as I can limp downstairs and see him and touch him, it is all right.
brightrosefox: (Default)
Woke up with the sensation of everything shattered. Stayed in bed with the cats for another hour, mostly because Jupiter was next to me kneading the heavy blanket and purring, while Rose was on and off my torso while nuzzling me, while Luna was pressed against my left leg before leaving. Got up. Took medicine. Was very cold. Told my body to suck it up and that there wasn't even a Raynaud's flare happening. Nibbled on cereal. Put on a warm jacket. Walked the twenty minutes to Wendy's and bought the mushroom bacon cheeseburger with pre-counted exact change (4.85) because I do that at fast food places after looking at previous receipts with tax. Took a bus back. Still had that shattered burning electrified feeling. Watching Futurama, with a Luna purring on my lap, while I ate as much of the burger as my poor appetite allowed.

"Zoidberg, you're an inhuman monster!"
"What are you, my driver's license?"

"Look. I know he's ugly and kind of corrosive, but we can't murder someone just because he's hideous and annoying."
"That's what we said about Zoidberg and look where that got us."
"Amy has a point."

Well, the heat is now on. Only 70 F but good enough. The house was cold. I was cold. Sweaters and layers can only do so much, no matter how stylish.
Also, this fibromyalgia attack and hypertonia attack and hemiparesis attack must all go the fuck away. I have a hammer. And a spear. And fire on a stick. Even though I still feel so worn down and shattered that I am leaning heavily on a cane, I will fight off the pain monsters all night if I must. Spears raised.

Rose kitten loves cream cheese on bagels. Right, right, Rose kitten loves everything.
Every time I prepare to take the morning Ultram and Soma, I put a few drops of sea buckthorn oil cocktail in my palm to mask the horribly bitter taste of the pill coating, and this is a Pavlov's Dogs thing with Rose: She will launch herself onto the counter and paw at my hand, and the I need to turn away, swallow the oiled pills with milky coffee or juice, then put a few more drops of oil into my palm and hold my hand out to Rose kitten, who will then lap everything up and beg for more. I must admit, her fur has been so soft and shiny that the oil must be doing something good. I shall have to start calling her Super Bright Eyes instead of just Bright Eyes.

And today, of all days, I have lost both of my wrist braces. *OW*
Time for painkillers, anti-inflammatory supplements, and uncontrollable sobbing because PAIN OMFG. You know, that pain that happens when you open any kind of bottle or container and a vicious screaming nerve pain shoots from your wrist up and down your arm and hand for no reason other than it's there. Yes, that OMFG PAIN.

Good News: I've been using my left hand more and more to help reconnect those bits of my brain that were damaged or killed by the periventricular leukomalacia. Because a premature birth wasn't bad enough, heh.
Bad News: No matter what, it hurts every single time and there is not much I can do except take the Soma or Baclofen and also stretch and massage.
Good News: Finding a drug that can actually truly ease cerebral palsy spasticity is still so mind blowing that sometimes when I pick up the bottle of Baclofen I just stare at it in awe, as though it is a profoundly rare mineral.
Bad News: Seriously, I can't find my wrist braces, and I can't wrap an Ace bandage on my own, and the fibromyalgia pain is making me very tense. No wonder the Soma and Ultram have been working so hard. It's something, you know?
Good News: My husband will be home from California tomorrow morning, and he can wrap my right wrist so I can at least type without crying. I am pushing my limits so hard that those limits are moving up. This is a Good Thing when you think about it. Higher limits, more chances to keep going and get stronger while I reach for those higher limits.
"Our brains have just one scale, and we resize our experiences to fit." -XKCD/1095 "Connoisseur"
"Human subcultures are nested fractally. There is no bottom." - XKCD/915 "Crazy Straws"
And see, this is why human subcultures are full of wild insanity that no psychoactive trip can match. If people can figuratively rip each other to shreds over home color patterns, antique furniture, television shows, yogurt flavors, food preferences, and book series, then... well, there truly is no hope for most of the human race. Seriously.


Oct. 5th, 2012 06:03 pm
brightrosefox: (Default)
Migraine *headsmack* Migraine *headsmack* Migraine
Time for baclofen and deep neck massages. And the Shiatsu couch pad. And later codeine if necessary.

‎"There has been limited study of the use of baclofen, an agent that acts centrally via GABA(A) receptors, in migraines and cluster headaches."
I also just love saying GABA a lot. It is one of my top favorite neurochemicals. Any drug, supplement, food, exercise, activity, and therapy that works as a GABA agonist gets love from me.
Also, yay chemistry:

(Also, I have never seen that kids' show, Yo Gabba Gabba, but I've heard of it. Is it any good?)
brightrosefox: (Default)
Today is a day of deep, deep depression, fatigue, and chronic pain so endless that the abyss is right in my face grinning. Everything is a Cheshire cat.

I have been forming this post in my head since yesterday morning, when I woke up with nothing working properly, with only bits of my brain and body truly functional, and I had to put on a mask and a whole costume, I had to grip my spears and even a sword for dear life, I had to smile and pretend to shine because I refused to worry anyone, because I didn't want to sink further.

And people tend to get tired of me constantly talking about my pains and feelings, because whoa, can't I talk about happy things, things that maybe don't involve medicine and coping mechanisms and feelings?
But here is the Big Thing: So many people feel this way. So many dear friends will read this and understand and perhaps comment and know they have someone to help them stand and fight.
And that is the other Big Thing. We do need help. We do need to stand with each other and fight. On the internet and in life, there are people who will say we are faking, that we are pill addicts, that we are attention whores, that we are crazy.

I will stand up and say, No, I am not faking, nor a pill addict, nor do I desire attention. But crazy? Yes. Yes, I am crazy. Yes, I need help. I am getting help. Medications. Therapy. Exercise. Nutrition. Supplements. Herbs. Vitamins. Holistics. I am not afraid to tell you what is happening, because you need to hear it, you who would mock and tease and bully and tell me to "Just slap a Band-Aid on it and walk it off, just exercise and feel better, just eat this food for two weeks without any drugs, just smile a lot, oh hey, I felt sad yesterday and then I got over it, I know how you feel, I wrenched my ankle last week and wrapped it up and now I feel better, I know how you feel, maybe you're just pretending, why don't you just get better? Quit talking about how much you hurt, everybody hurts, it could be worse."
It could be worse, yes oh yes. Ohhh, sweethearts, it could be so much worse. Yes.
Here, let us try something: You can have my body for a while. You can feel every single feeling I feel, think every thought I think, know every pain I know. See how it feels. No? You can't? Really? Are you sure? Still no? Oh, dear. Well, then, I suppose we will have to stop associating, even if we have only been talking via a forum, a community, a social network, a bus stop, a party, via phone, via web video, in a store, in a house. Oh, well. I thought maybe you had enough compassion, or, you know, empathy. I guess I won't find out. But you know what? If it ever happens to you - and part of me hopes it won't and part of me hopes it will - I shall still stand with you even if you hurt me, because warriors stand up.

There are beautiful, wonderful, incredible, amazing, extraordinary, fantastic people who are being slowly devastated, crippled, destroyed by their own bodies' various systems, for no true reason other than they just happen to live in those bodies. Some of them think about how horrible they are, how they are useless, worthless, pointless, draining, a burden to everyone around them. I feel that way quite a bit. There are some who want to harm themselves, some who want to kill themselves. I cannot do that, but I admit I have imagined it. If I truly wanted to harm myself, I would stop taking my medications. I would let all the pain crash over me in one single tsunami with wave after wave, while I spasm and shake and seize and sob and scream and shiver because I refuse to give myself relief, because I refuse to make it stop. But I will not do that. I can not do that. It would destroy everyone who loves me, whom I love. And I know that. That is another Big Thing.

To everyone reading this who feels the same way: I love you. You are loved. You will always be loved. You are extraordinary. You are amazing. You are fantastic. You are beautiful in so many ways. I love you. I will stand up with you. I will give you spears, swords, shields. I will show you how to scream a battle cry loud enough to make the gods hear you. I will show you how to launch into battle with these monsters. We will never win the war. We will often retreat covered in blood and darkness, growling and licking our wounds and crouching together to patch up each other's wounds.
I will take you by the hand and lead you outside. We will stare up at the sky and say, "Oh, this is such a beautiful sky." The sky may not look beautiful. The sky may be full of dark storm clouds and we cannot see the sun. But just because there is a storm does not mean that the sky has gone away. The clouds and the dark will move, and we will see the bright, bright sky, all shades of blue, and we will see the sun, gazing upon us like the eye of a god, giving us light and warmth and strength. We cannot look directly at the sun, but we can look at the sky and call it beautiful, and we can look at each other, covered in war wounds, and say we are beautiful. We are. We are beautiful.
I love you.

Oh, and I wanted to add: I took my painkillers and anti-anxiety drugs today, of course. They are helping, of course. I got exercise, I meditated deeply, I spoke with a therapist, I ate healthful happy foods, I did all the things people suggest one does in these situations. I am very very slowly working my way back to a steady and stable mood, but it will take a while - many people don't understand that it takes a while. That is yet another Big Thing. "Why isn't your treatment working yet? What is wrong with you? Shouldn't you be feeling better by now? Why are you still like this?"
It is tiring, and it is irritating. But I am still going to share, and speak, and stand, and stay strong. Because you asked. Because you need to know. Because I love you.


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