brightrosefox: (Default)
I'm crying over the death of Robin Williams this hard because people have already started in on the bullshit rhetoric that severe clinical depression isn't supposed to affect the rich and famous. That "If their life is so perfect, why are they so depressed and suicidal" bullshit.
No. Nope nope nope. No. That’s not how it works. Do not insult people like me who deal with clinical depression. No.
Most of his film roles featured depression and mental illness heavily. I'm seeing comments like "He did all those roles with a purpose because he knew what it was like, so how could he do this himself etc" and I cannot help but feel rage...

O Captain, My Captain.
He really was a man I looked up to, in several ways, and one of the greatest actors I've seen.

Look, I've lived with clinical major unipolar depression all my life. To my brain, it's a chemical imbalance - it affects an organ so vital to my existence that not treating it means irreparable damage. There have been plenty of arguments all over about what depression is and isn't: Disease? Disorder? Illness? Emotional Syndrome? People have questioned and fought against the very idea that it is a neurochemical imbalance. People have insisted that depression does not even exist outside of emotional states.
There are depressed patients who are able to live with this illness without medication or therapy, basically using mind over body and lifestyle techniques. That's fine. That's great for them. Sure. Unfortunately, most of those patients will try to push that lack of real medical treatment on other patients, which can be dangerous. And the state of mental health services in the country I live in is awful. All I know is that I when my symptoms rise up, I care for myself as best I can - and try to educate others as best I can.
Right now, I'm in a really really bad place. I'm not in a depressive state. But I'm irrationally upset, anxious beyond reason, physically hurting from emotional agony. That is not a joke, dear detractors of Robin Williams and his battles with clinical depression.

I promised myself I would get away from the internet until I could breathe without screaming and sobbing. But I've already been getting emails and messages from friends wanting advice, as though I might be their Boggle Owl in a way. I want to help. I need to help. I live to help.
I will stay away from forums and communities. Tomorrow, my husband takes me to physical therapy, and later I can unwind fully. But to everyone I love: You know where to find me. I'll still be your Bright Lotus (someone gave me that nickname and it stuck).

I took my own drug treatments. I'll be all right.

http://greensh.livejournal.com/444686.html
http://psychcentral.com/lib/what-is-depression-if-not-a-mental-illness/000896?all=1
http://hyperboleandahalf.blogspot.com/2013/05/depression-part-two.html
brightrosefox: (Default)
So, in my cerebral palsy support group on Facebook, someone posted asking about all the other conditions we all have that may and may not be related to cerebral palsy. I commented quickly in a very instinctual pattern, then realized that a part of my brain must have been saving it up in a fantastic pattern. I think this at least two dozen things.

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

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

There has been pain, pain, pain, fatigue, pain, and tests. I had a brain MRI because the neurologist wanted to have an updated picture of my brain. She wants to make sure that the issues I've been having are not necessarily seizures but severe hypertonic spasms. Next month, I will have a video imaging EEG for eight hours to see how often I have seizures.
None of this worries or bothers me. I almost don't care anymore.
I hurt. I'm exhausted. Whatever. This is life. Like... my mom keeps wondering what I can do to "make it better" and at this point I just spin the wheel of answers. Nothing makes chronic pain stuff "better" - it just lessens the symptoms.

So, anyway.

"In the best known version of the Greek myth, Persephone is dragged down into the underworld by Hades, whose title is 'Pluto.' But in earlier, pre-patriarchal tales, she descends there under her own power, actively seeking to graduate from her virginal naïveté by exploring the intriguing land of shadows. 'Pluto' is derived from the Greek word plutus, meaning 'wealth.' Psychologist James Hillman says this refers to the psyche-building riches available in Pluto's domain. Hades, he says, is the 'giver of nourishment to the soul.'" - Rob Brezsny

"I am channeling my matron goddess Persephone today. In the original myth, she chose to descend into the world of Hades in order to gain knowledge of the shadows. Hades had a power to nourish the soul, which patriarchal translations misinterpreted. There was no abduction. There was no assault. I always sensed something beyond the stories.
In my own Joanna way, I see Persephone as brightness and Hades as darkness. The lotus and the moon. Mage of light and mage of dark.
The story of Persephone and Hades is probably one of the most misunderstood, misrepresented, and mistaken relationships in mythology. I have never been so relieved to see my suspicions confirmed."

I am still obsessed over the original myth of Persephone and Hades - how she so willingly and deliberately descended into the shadows, how Hades in fact was nourishment for souls. I grew up knowing that Persephone was one of my goddesses but I didn't like the patriarchal story. How wonderful and relieving to know that there never was a kidnapping. The more I meditate on my connection with their relationship, the more I feel powerful, relieved, relaxed, and free. I may one day figure out enough lucid dreaming to really communicate with the part of the gods that resides in my Higher Brain and Subconscious mix. You know, the Quantum Psychic Consciousness.
Oh. I'm professoring again. Cough.
In conclusion, polytheism is awesome and if you can connect to the deities that call you, it can be enlightening.


So, anyway, all my medicines and treatments have been wonderful and ideal. Yay.
brightrosefox: (Default)
Seriously, though. This toothbrush containing edible gold, bought at H-Mart, made in Korea, seems to really do something. I've taken colloidal gold before. It was good to my teeth. The toothbrush, with nothing but herbal powder, actually seems to make my teeth feel clean, smooth, and hell, even detoxified. I don't even know if that can be a thing. I used it dry a few times and got the same sensation. DeoLife toothbrushes. Gold, bamboo charcoal, silver. I get the silver and the charcoal, those are famous for being antibacterial and such. The one with the gold calls itself detoxifying, removing plaque build-up easily. I am skeptical, but there seems to be some interesting evidence. My teeth are certainly whiter.

So, "Orphan Black" is still awesome. "Black Box" is still interesting despite possibly turning into a "magical mentally ill doctor always saves the day" stereotype. I mean, I really need to see more than these first two episodes, and I hate that a mere two episodes in it is already being torn by critics. But I mean, it's like watching my life in an alternate reality. What if I were a neuroscientist, dealing with my own neurodivergence and mental illnesses, able to help my patients precisely because I could connect to them on such a specific level... I need to keep having faith in the show, except for how Catherine doesn't want her fellow doctors to know she is bipolar, even though they probably wouldn't give a shit. Like, the boss was saying that any doctors with medical conditions needed to report them, since that one surgeon with the brain tumor had a seizure during a brain surgery and became suicidal. I realize that my disabilities and invisible illnesses are my private business. But if I were a specialist working in a hospital, in charge of brains, I might understand that my supervisors might want to know about my specific mental illnesses, you know, in case I had an episode. I don't know. I find Dr Black a bit untrustworthy with her addiction to her mania. I realize she has wanted to keep her bipolar private for her own Reasons. But I don't think that is helping anyone, least of all her daughter. I mean, there is a teenager involved, who is already displaying symptoms of her own. Does Catherine really need to stay under that radar if it might cause damage to her kid?
Thoughts, anybody?

Also, this is something I wrote on Facebook and might as well copy here.

***
http://chaoslife.findchaos.com/aging-agility
Perhaps I should attempt this "Max Capacity" exercise thing they describe in the comments. So far, kundalini has done nothing for my joints, but I am a smidge looser, so. As I told a friend, I am maintaining a broad sense of humor. Spastic hypertonia plus ataxia equals falling over and bruising myself. Which must be laughed at. Lest I go mad. But, you know, I learned something very important: Now that I have made the very personal decision to do a very specific type of yoga on my own, with no suggestions from anyone, I feel that I can better combat health zealots.

Speaking of, I so called it: A commenter posted this: "Not to be a bother but… If you did a little more exercise… I mean, there are 80 year old people that can do a perfect arch, so the age is just an excuse to do not do anything!"

Ahh, health preachers. Everyone knows what's best for you, and obviously you cannot think for yourself. It's like partisan politics, but way more personal. One side wants to be a coddling Mommy, one side wants to be a strict Daddy, one side wants to be a weird Uncle, nobody wants to actually help you without taking something for themselves. It's fun to sit back and watch, though.

And you know what, guys? I am actually going to ask for yoga advice. Specifically, though, regarding kundalini. I need suggestions for very light, gentle stretches that are good for osteoarthritic knees and hips. In particular, the ligaments are ridiculously tight due to palsy, and they keep tightening back up after any kind of exercise.

You see, I have been having intense dreams in which so much pain has been concentrated in my knees that dream me is often unable to stand and walk without screaming violently, both within and outside the dreams. It has gotten to a certain point in which I start lucid dreaming and become afraid that I cannot change the dream pain. I become afraid in the dream of moving in certain ways. In my dreams, all my fears and anxieties and obsessions are released, naturally, and not even using my cane eases them. It never helps that nobody notices, not unless they are unknown dream people. Too many dreams have taunted me about my friends not seeing these struggles, being too far away, requiring me to walk helplessly until I find relief.
A couple of dreams ago, I was in northern Brooklyn, trying to reach my childhood neighborhood of Midwood, along Kings Highway in southern Brooklyn. No taxi would take me after sundown, and this I was forced to walk and walk, and it did not get better. I had no magic powers. The dream people around me could only walk with me and talk to me.
The dream abruptly dropped me in a Metro station in which the escalators and elevators were broken. It may have been Wheaton, which has the longest escalators in the Western hemisphere.That is indeed a nightmare. For anybody, anywhere, regardless of health. Fitting that it would be in my dreams.

Back on topic: I would love advice on how to apply physical and emotional exercise to my unconscious mind.
However, please do not tell me to stop taking traditional medical treatments. Please do not bash my pharmaceutical medications, since they actively help my symptoms. If you want to see what type of supplements I take that are anti-inflammatory and joint supporting, check my Notes section for a post that lists all my medicine before making a supplement suggestion. Chances are that unless it is an extremely obscure herb, or an unusual TCM medicine, I have tried it.
Eh. I'll post that medication list.
https://www.facebook.com/notes/joanna-capello-paul/take-all-the-pills/10151028056823107
***

I cannot say I am well. Am I ever truly well? I mean, the only reason I consistently talk about symptoms is to remind others that we can work with all of this crap. Many of my dear fellow chronically ill cripples want to keep their posts sharing pain to a minimum, which I support, respect, and understand - because, really, it's the same thing day after day. I think the main reason I'm a frequent updater is because I get so many questions, so many please for help, so many requests for advice and suggestions and just words of love. And those things, I can give.

Also I think I may be in a depression episode. It's taken a couple of weeks to realize that. It's so... light. So subtle. Huh.

So. Other things...

http://juststimming.wordpress.com/2012/05/01/truth-is/
"What if being cured didn’t fix those things?
Because ultimately, if I took a cure, I’d be surrendering. Instead of fighting for my right to be treated and valued as a human being regardless of disability, I’d be letting go, giving in, and letting myself be changed into someone easier, someone acceptable, someone convenient. And I want to be clear– there is nothing wrong with wanting things to be easier or wanting to feel safe or accepted or just being done fighting. That just means that you’ve been asked to be much, much stronger than everyone else for much, much too long.
But if, in order to be safe I have to stop being me?
Then I’m really not safe at all."

http://erinmccolecupp.com/2014/05/01/blogging-against-disablism/
"We are prone to feeling defeated because it’s a battle just to get our muscles to move us out of bed every day, so telling us to “be more positive” in the face of that is kind of insulting."

Sensory Processing Disorder. Cerebral Palsy. Temporal Lobe Epilepsy. ADHD-Inattentive. Major Depressive Disorder. Multiple Anxiety Disorders. Autism. Fibromyalgia. Chronic Stress Disorder. Hypersensitivity. Spastic Hypertonia. Migraine Disorder. Chronic headaches. Chondromalacia. Sleep Disorders. Dyscalculia. Sciatica. Chronic Back Pain. Lordosis. Rhinitis. Asthma. Recovering Anorexia.
Oh, absolutely. Being told to "be more positive" is indeed kind of insulting.

My mom keeps telling me that I've fixated too much on being autistic, on advocating, on activism. She suggested that I just BE. I'll take it.
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My darling Cara Liebowitz wrote a lovely post that I had to share:
*
"I was going to bed, I swear, but The Brooke Ellison Story is on TV. Gotta say, as cheesy and inspo-porny as it is, I love it. And on some level, I AM inspired by Brooke Ellison, mostly by her sheer determination and drive to not only succeed, but excel, not only in the face of such a life changing injury, but in the face of everyone who told her she couldn't do anything.

I don't know, I feel like maybe its different for someone with an acquired disability. For us congenital folks or those who acquired their disabilities very early on, we just go along living life the way we know how. We've never known any other way. But for folks with an acquired impairment later in life, especially one as severe as Brooke Ellison's, it requires such a radical restructuring of your life and worldviews. I am inspired by those who push through and come out the other side. I'm not so sure that's wrong.

Thoughts?"
*

I shared this because it is exactly how I feel regarding being a congenital and seeing an acquired do something dubbed "So Inspirational TM!". In the disabled community, most of us have a very strong opposition to "inspiration porn" - (the most well-known example, perhaps, being that Scott Hamilton quote and poster of Hamilton and a child both with those expensive prosthetic legs, saying 'The only disability in life is a bad" attitude" and any photo of someone in a wheelchair or crutches with a quote of "If they can do it so can you" or "What's your excuse" Fuck I hate those phrases so fucking much fuck fucking fuck - But every so often something comes along that falls into a category) that is only mildly inspo-porny and actually uplifting, even though nothing inspirational actually happens that we can see.
Like the quoted story, about a woman who becomes paralyzed and gets into a top-rate university after overcoming many challenges. Now, to people like me and Cara, with our cerebral palsy, it's like, So? That's it? What else happened? What made her so incredibly inspirational that it required a sappy movie? Why isn't there a movie about my life? I was born three months early in the late 1970s, nobody really cared about my cerebral palsy because it was mild, nobody thought I was autistic because it was the 1980s when autism was barely being looked into, I in fact had no idea of any of my invisible illnesses until I was in my late 20s... You get the idea.
Now, I have extreme respect for anyone who must go through a radical reconstruction of their identity when something like an acquired disability happens, because fucking fuck that is shattering and destructive and requires a particular rearranging of so many parts of their lives and their thinking.
There are some acquired folk who get snotty about it and either insist that everyone must "fight for a cure!" or throw themselves a public pity party and beg everyone to "find a cure!" which I can't really sympathize with.
Then again, I'm the type of cripple who embraces my cripplehood... because I have never known anything else. That may, in fact, make me seem snotty, snobby, snooty, etc.
But having a disability that permanently impairs daily life, whether congenital, acquired in very early childhood, or acquired later than childhood, changes your mindset, outlook, and indeed your soul, in ways that nobody can predict. And sometimes, you literally have to just roll with it. Limp with it. You know.
brightrosefox: (Default)
Sooo... that hard fall I took yesterday outside the medical buildings? It turns out it was a little worse than I thought. This displeases me. Both legs, hips, knees, and the general lower back is stiff, bruised, burning, throbbing, stabby, and eurgh. And somehow, my fingers feel as though they've been slashed from the inside. I don't understand that part. So I've been doing sciatica hamstring stretches, like my favorite butterfly stretch, hot showers yada yada. You know, the personalized modified NotYoga basic poses that might be basic Baby Pilates. I really did not expect it.

It was just a slip and fall onto a grassy sidewalk, I said. I was wearing layers and carrying a cane, I said. It wasn't so awful, I said. What the fuck is this, I now say.

So, right. Last night, I dreamed that I was on a beach being attacked by a creature that slashed me to ribbons before canon characters from "Lost Girl" arrived (I know, facepalm). I was still an airmed Light Fae (pronounced "awr-meed"), my OC, so I healed well enough, but I remember Bo and Dyson holding me tight trying to staunch the blood flow while Trick guided Kenzi through some sort of incantation, I don't know. I just remember falling asleep in Bo's arms. And I woke up in actual life, in my bed, feeling exactly like my dream self. The sciatica in my right leg was so intense that I stretched for hours without leaving the bed. I couldn't move my fingers very well. I don't even know. (Also, Doctor Lauren wasn't there because I dislike Lauren :p)

So right now, neither leg works well and it is really hard to limp with two stiff legs. The remaining Soma, which will not be refilled, will be taken until the bottle is empty, and then the increased Baclofen will take over. I will continue to stretch and apply massage and heat, because fucking sciatica. Also, during the night my back kept spasming so hard that I had to separate "CP spasm" from "complex partial seizure" since those seizures tend to send warning signals to my spine for some reason. It may have been both. Chronic stress, after all. Banging head on wall. All these little things, I swear. I'm clenching my fists. It hurts. I want to scream.

The ridiculous part of this is that it was just a simple trip, slip, and fall on a grassy sidewalk. And yet my entire body has decided that it was a Big Deal. *side-eye*

I have friends battling various cancers, severe diabetes, multiple sclerosis, diseases with a potential death sentence. They're trying to stay low and not pain-brag or talk about their symptoms. I admire their strength. I admire how we all handle our own illnesses in our own way. I just... I cannot stop feeling the need to talk, even if it's just about those little things. Because I know people want to know. I want to tell people I am here, and they are not alone.
brightrosefox: (Default)
Copied from Facebook, because it should be put here.
*
My neurologist is hilarious and awesome. And she thinks the same of me. We're gonna schedule a brain scan. And we traded quips and jokes about why the he'll I didn't get diagnosed autistic until last year. And she agreed that I am badly stressed and depressed for no reason and she desperately wants to help, and she wants to increase the Zoloft a bit to see what happens, and she's very pleased that the passion flower is helping me sleep, and she cares so much it makes me cry. She hugged me when we were done.
I told her that I feel like I'm on another planet with super caring doctors who really help, and she looked so empathetic and almost upset about the lack of such support. I heart you, Chang Ching Debbie Lin, super neurologist and friend to patients.
*
And here I thought they would take more blood. I must remember that the good veins are in my right arm. I'm impressed I was able to watch both arms being poked. That was a big needle.
*
And of course I tripped and fell flat on my knees and shins while walking through the grass. As I was using the cane to slowly get up, I heard a woman call out, and then a hand was on my arm. She asked me if I was okay, and asked if I was going to the bus stop across the street. When I said yes, she held my left arm and helped me the whole way and stayed until we were sure I was okay. Then she went back across. Funny thing was that we were right next to both the hospital and my primary physician office.
I'm home now, and both my legs are bruised, and I'm all stiff and annoyed. But the look of concern on the woman's face made me grateful that people care enough...
*

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But for me, everything is a cycle. I will never be free. I acknowledge that my entire life, literally, is, was, and will be about recovering from trauma. I have tools to work with. I have doctors who understand me. I have taken all my medical problems on with my own personal arsenal, and I know better than any of the people who dislike my methods how to work with, on, and despite myself. I have my girls, my spirit guardians, my coping mechanisms with human faces, the parts of my brain formed from fictional characters that allow me to handle different parts of my trauma. And so I keep going. Trauma is a part of my life. And that is okay.
brightrosefox: (Default)
Everything is ow and headpain. Fuck you too, winter.
http://www.headaches.org/education/Headache_Topic_Sheets/Coexisting_Migraine_and_Tension-Type_Headaches
You know those coexisting migraine and tension-type headaches that wax and wane as they will? I keep having those. I don't like taking codeine every few days, but those daily injections of unicorn blood don't seem to be working. I guess I'll just have to trust those evil evil pharmaceutical medications that actually stave off the worst of the symptoms. Evil, I tell you. How dare they ease my pains without being freshly cut from a rainforest tree fertilized with dragon manure. Wait, that's the fantasy version related to the croton lechleri tree, which makes dragon's blood resin, which is lovely, but only as a topical treatment.

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

*cough*
I'm done.

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

This essentially sums it up. You don't have to be queer to appreciate it, of course (I am bisexual myself), but it is one of the most accurate, respectful, and honest videos I've seen on the subject.
https://www.youtube.com/watch?v=yqtuwXGvpK4
brightrosefox: (Default)
I had so much amazing sushi it was amazing. I watched with amusement as one friend requested lobster miso and got, literally, a bowl of miso with a lobster claw in it... in the shell, and no tools save for chopsticks. I wanted more sushi, and they let me have more sushi because I fucking could, oh my gods, even the waitress was impressed.
I walked around a shopping area at night with friends and I didn't have a cane and it was all fine, and I socialized easily with four good good people, and when I woke up in the late morning, I hurt so badly that the only way I could get out of bed and walk anywhere, say, to the bathroom, was to put myself back into a half-asleep state.

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

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

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

Anyway. Sushi makes things better. Lots and lots of sushi. Lots. Sushi.
brightrosefox: (Default)
Seizure happened in the kitchen. Jupiter meowed and rubbed against me while I crouched. Adam came in and gently lay me on the floor. My eyes were open and blank. Adam touched my face and reached for my mind, and I spasmed and gasped and blinked. I asked why I was on the floor. Adam helped me up and stood me against the large freezer. My memory is swirling. Alicia is holding me. Earlier, Adam said he told his boss, a fellow animal lover, that he needed an extra day to care for his wife. I rolled my eyes and said that was not necessary; that I was fine. Never mind. It was so dark and so white equally braided as order and chaos magics. I was spinning at ninety-nine percent light speed and thirty-five miles an hour. The world was elsewhere. A few seconds lasted a thousand years. Adam suggested I go upstairs and rest. Jupiter is suggesting a cuddle. I am thinking coffee and clonazepam and baclofen. I am made of light and love and pure order-chaos magic in its simplest form. I can give myself the right strength. May be that I can regenerate. As brightly and intensely as a Time Lord. I always shine enough for everyone.

brightrosefox: (Default)
Some random rambling about my own mind, my imaginary friends, and how my mind likes to invent coping mechanisms that talk back.

One of my imaginary friends, Amara, who is the human coping mechanism in charge of all the neurochemical, neurodevelopmental fuctions, has been interacting with me more and more ever since Alicia (the epilepsy mechanism) and Serena (the pain, fatigue, psychological, neurobiological functions) urged her to show herself more often after I fell into a chemical depression with severe anxiety. Serena and Koan could only do so much.

Amara, at the beginning of her creation, was not even human; formless and elemental. These days, she is human shaped but she loves to take bits of my writerbrain as inspiration. Her ears are pointed and her eyes and hair change color with her moods. She likes to mimic my bone structure and basic figure shape, just with more muscle intensity. Serena says it's because Amara wants to show me that I am beautiful.
Also, when I saw a Google image painting of a woman with elf ears and a unicorn horn, posing with a unicorn, Amara insisted I make it my current Facebook cover photo. She made herself up to resemble like that character while still mimicking my features, including the horn that represents the third eye - just with chestnut brown streaks in her white-lavender hair and honey brown flecks in her intense blue eyes... although none of that is her true coloring. When she made herself human, her coloring randomly became alabaster skin, gold eyes, and pale flame hair, essentially inhuman. But she kept the mirror shape of my skeletal structure and body shape. She even plumped her lips, made her eyes bigger, and made her nose smaller, because she knew I desired that. It makes me smile, which I think she likes. She wears the same jewelry as me, the same clothing colors, the same makeup colors. She is determined to "reboot" the parts of my brain that are having trouble accepting the recent flooding overload of information about these disabilities and chronic illnesses. The name Amara means everlasting, eternal, immortal... which is why she was formless and elemental to begin with. I finally understand why I created her. And she wouldn't mind being the inspiration for any stories I write. I'm grateful for that.
She insists that my jaw, hair, and eyes resemble the jaw, hair, and eyes of Elena Risteska from Macedonia, which I agreed with and humbly accept with a simple thanks. The only way I even knew about Miss Risteska was through searching for shades of brown.
http://upload.wikimedia.org/wikipedia/commons/e/e2/Elena_risteska.JPG
http://img27.fansshare.com/pic34/w/elena-risteska/1200/12861_elena_risteska.jpg
http://userserve-ak.last.fm/serve/_/18051115/Elena+Risteska+elena+r.jpg
https://fbcdn-sphotos-e-a.akamaihd.net/hphotos-ak-ash3/p480x480/578088_479387062121006_1822646409_n.jpg
http://img27.fansshare.com/pic34/w/elena-risteska/1200/12858_elena_risteska.jpg
http://tekstovi-pesama.com/g_img2/1/e/28986/elena%2520risteska-10.jpg
She just wants me to feel better, to feel my own positive human emotions. Since Amara is still learning about humanity, she looks to Serena for help. In my dreams, they have amazing conversations.
I'm so glad I created these characters. They help keep me sane, emotionally stable, intellectually stable, and psychically curious. Also, every time I meditate and concentrate on my third eye, I actually feel a short unicorn horn on my forehead.
https://scontent-b-lga.xx.fbcdn.net/hphotos-frc3/1469926_10151743304270684_204893984_n.jpg
I just love that my own mind is creative enough to make up whole people with entire personalities, back stories, individual appearances, individual likes and dislikes, and actual behaviors. They mainly come to me in sleep dreams, daydreams, and meditations. My psychotherapist adores the fact that they exist, which relieves me. It's just one of those things that I, Joanna, have in my brain to help me handle all the stuff that life gives me. Awesome.
brightrosefox: (Default)
"Sometimes the only way I know how to work through something is by writing..."
Hi.

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

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

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

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

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

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

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

I will probably listen to this video enough to memorize or recite most of it, and my poor memory will do its best to hold it close.
brightrosefox: (Default)
Words, and words. My life is all about words.

"Honestly, I kind of get the impression that for the first twenty-something, thirty-something years of your life, this wasn't a thing you were able/allowed to talk about, and what's happening now is a flood of FINALLY being able to talk about it, FINALLY getting in touch with people who have similar neurophysio profiles and can relate to you, FINALLY being able to put all of your thoughts and feelings on the table and figure out what this actually means for you. Of course you're focused on it: you've got mountains of stuff to sort through. I think it's hard for other people to get what this really IS because it's such an intensely personal process. So they make assumptions, instead."
-My friend Sarah, commenting on how/why I keep going on about medical issues affecting me.

I don't want to talk anymore. But I cannot stop writing. My Livejournal is being filled and filled. I need to have a record, after all. I just want to avoid pain-bragging. I just want to stay clinical and curious. I just want to be able to realize every single tiny thing about every part of everything that damages me without going overboard, without making people angry. I am learning. It took a cinderblock punch in the amygdala to make me realize, but I have realized.

To quote the Tenth Doctor: I'm sorry. I'm so, so sorry.

Orange juice:
http://hyperboleandahalf.blogspot.com/2013/05/depression-part-two.html
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)
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)
https://www.change.org/petitions/chairman-murphy-and-ranking-member-degette-stop-threatening-the-hipaa-rights-of-people-with-psychiatric-disabilities
To quote a dear friend:
"I am a fully-functioning human being, mentally ill people pose NO greater threat to society than non-mentally-ill people, and we are entitled to exactly the same protections as every other person. Do not discuss these issues without allowing mentally ill people to educate you. Do not discuss these issues until and unless you are aware that mentally ill people are more likely to be the VICTIMS of violence than the perpetrators. Inform yourselves and actually talk to the people involved. Don't bring your own preconceived ideas to the table, call them fact, and suggest policy based on them. That's inhumane AND unlawful."

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

***

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

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

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

Read more... )

And now, time for the daily supplements that I take daily because they work for me.
brightrosefox: (Default)
So there was a seizure. It lasted four to five minutes. I am ridiculously discombobulated and typing very slowly. Dysphasia abounds. Typing is easier than talking. Spasticity is violent. Shaking is violent. Burning, stabbing, electrifying, gnawing.
My Rose kitten was on my lap and purring and licking my face and my face. I was away. I sensed my body, arms crossed, rocking back and forth, falling back in the chair, mouth open, head to the side. I heard things. Futurama on TV, dialogue mushy. My cat purring. I felt unchained and inside a plunging elevator. I begged for Alicia. Everything was so dark. Someone took my hands, hugged me close. I glimpsed long shining blond hair I cried and yowled. I just wanted home. I felt too weak.
As I began to awaken, my first words were "Rose... Rose... kitty..." and my right arm lifted and I managed to touch her and pet her. She nuzzled my fingers. I cried and gasped.
Now the world feels so strange. I must sleep. Is it all right to sleep? I remember days, weeks, months ago... someone yelled at me and insulted me. I don't remember, I don't care. I remember minutes, hours ago... someone was talking about makeup colors to ease my panic. I was comforted, entertained. People were commiserating. I felt like a member of a powerful group. I was a warrior in the world. I am a drained tired weak sad warrior. I am covered in blood. I want to sleep.
Can I sleep?
I am a Dragon Princess, too.
I can't remember the episode; only cool, velvet darkness, and a blond woman holding me. I remember breathing in cold dry air. I remember thirst. I remember crying so hard.
My skin hurts.
I am typing this with two fingers.
Can I sleep now?
My head hurts.
My soul hurts.
I am still a warrior.
Can I rest now?

I must write this down. I must, I must. I need records. This journal must know. As much as I can.
Two fingers. It hurts so much.
Those pain pills are working well. I am grateful.
I am thirsty. I am dizzy. I may crawl to bed. I have many canes. I will not crawl, not if something can hold me up.
I want a hug. A cuddle. I want someone to say, "I love you. Everything is wonderful."
Even online friends can do that. I do not care what anyone says. Some of my greatest loves are online, states away across the country, and I will never let go.
I love you. Everything is wonderful.
May I sleep now?
brightrosefox: (Default)
More teeth grinding. Oh, of course I should have ignored it. But I unfortunately have this pesky desire to explain how the brain and body connection works when people don't understand disabilities. The very sad part is that people will treat physical illness like mental illness.

You know, "Maybe if you just ate better and had a better attitude, you wouldn't need that insulin! You can cure diabetes yourself!" "You had a heart attack? Probably because you were stressed. Calm down. I bet it wasn't even real." "Hey, I heard that the best way to overcome cancer is to pretend it doesn't exist inside you! You should do that. And stop whining."

And of course, the ultimate disability insults, the phrases that make me see red, that enrage me to the point of Hulk Smash mentality:
"The only disability is a bad attitude!"
"The only limitations are the ones you set yourself!"
"You're not handicapped, you're handicapable!"
"If you truly believe there is nothing wrong with you, you will become enlightened. Disabilities just mean you're holding yourself back from life!"
"You're not disabled - you're differently abled. You can do anything and everything you want!"

And, you know, I get it. I do understand that there can be intense, extreme emotional and psychological connections to having multiple disabilities, whether invisible or visible or both. Some people do tend to let themselves get bogged down by the pain and weakness, the daily crushing symptoms that require new, different ways of moving through life. But you know what? Telling a disabled person that their illnesses really don't matter in the long run is stupid, insulting, horrific, and ugly. And yet that is what people do. I am quoting from actual emails and messages I have received, since I am a disability advocate. I've been targeted by people with childish mentalities who think it is funny and joking to mock me, call me names, and make fun of my multiple illnesses. I've watched it happen to friends, to the point where they needed to cut away from old friends whom they thought they trusted.

It hurts to be told that what is happening inside you is not real or can be easily fixed or is your imagination or is merely emotional stress. That really, really hurts. Even if you suggested that they step inside your head or body, it wouldn't matter to them; they wouldn't be in your mind, so why should they care? Even if they did become disabled, they probably wouldn't apologize to you.
I've deleted and destroyed most of the cruelest missives sent to me, because they don't need to be shared with my loved ones. But I remember them. And you know what I do? I look beyond them. I refuse to be affected. I rise above them and know I actually am more enlightened than them.

There are disabled people who do believe that they should be called different terms, that their disabilities do not affect them nor are part of them. That's wonderful for them. For me, though, when I wake up every morning in agony and go to sleep every night in agony, I know I am disabled. I know my disabilities are part of me. That's how I see it for myself. However, I still life a wonderful life, and that matters so much.

Living the best life I can is what truly matters. The fact that I have disabilities is just one of the facts of my life.

Edited to add:
Look, let other disabled people (oh, hang on, the PC term right now is "person with disabilities" because People Come First, I don't know) say that their disabilities don't make up who they are, don't define them, are not part of them. But for someone like me, who was born that way, who lived an entire life that way... I can't just wave my and and say, "Oh, pff, my disabilities are just things I life with; they're not part of me." Because, in a really technical sense, they are. Kind of like Borg nanotechnology, you know? Sure, I can heal and ease the symptoms, I can slow the progression, I can even remove, heal, and even partially cure a few of the syndromes. Like Seven Of Nine from Star Trek: Voyager. But like Seven, part of that stuff is still in me and I cannot ever get rid of it. If that makes me attached to my disabilities and handicaps, then fine. If that makes it seem as though I treat my illnesses as part of who I am, then I am guilty. I was born damaged enough to develop a dozen separate neurological and neuro-other disorders. I may be able to use various medicines, remedies, and treatments to deal with my conditions... but that doesn't mean that I can cure myself. That doesn't mean that everything will just go away or become separate from me.

End statement.

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