brightlotusmoon: (Asha)

Good things.
The personal therapy protocol is juuust starting to work. Slowly and softly. The doctors said slipping off is natural. But my slips are fewer. I think the new drug is working much faster than expected. No terrible side effects after all between dry mouth and that tingly sensation that the world is shiny shiny shiny. But I can already feel those most compulsive thoughts starting to be quiet.

Now, if I could just not be badgered by acquaintances who want me to be better now now now. Yes, this has had me in its psychiatric grip for over four years. It takes tiiime to get the ideal treatment. Yaaaaugh, leave me alone. You don't know. You are not inside my neurology.
Repeat. Rinse.
Those of you who get it, you get it.

So much meditation. It is in my dreams. I am ready to work myself through and beyond. Shut up about it taking all these years. Damaged braining is hard.

I make it hard for people to love me well enough to help. Which is why I need to do this on my own.

/venting ranty ramble

brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
Self and life have been interesting.

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

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

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

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

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

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

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

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

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

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

I've been watching "Red Dwarf" on Netflix with Adam while he's had time off. I forgot how wonderful Kryten is as a character.
brightlotusmoon: (Snow White Blood Red Warrior)
Skull and neck paims beyond belief, augh.
Caffeine and MSM and Yerba Mate and Moringa and Mangosteen and Noni and Soma and Klonopin and stretching and exercise and even MIPCCY - Yes. I think I too much Ultram yesterday by pure accident of brain fog, so no more for a few days. But the rest of it, yes. I will be okay.
I'm getting there.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
I did not write this. I just shared it.

***

Originally posted by [livejournal.com profile] naamah_darling at NIMH does the smart thing, ditches the DSM
The National Institute of Mental Health is abandoning the DSM.

This is potentially monumental, and I've seen very little mention of it anywhere. Partly, I think, because people don't really grok how big a deal this is.

This is a very good thing, and for those who don't grasp why, I will try to explain. (Though the link does a really great job of it, so really, you can just go read it.)

The Diagnostic and Statistical Manual of Mental Disorders (DSM) is a big-ass book released by the American Psychiatric Association that provides a standard method of categorization for mental illnesses based on related symptoms. Like a dictionary, it has given doctors, psychiatrists, and other medical professionals a common vocabulary with which to describe and define mental illness, so they are using the same terms in more or less the same ways, and arriving at consistent (even if they are sometimes inaccurate) diagnoses. It has been revised several times since the first edition in 1952, and has been released in four, soon to be five, major versions.

It has been a useful tool, but it is now insufficient. Over and above the fact that it has always and still does pathologize certain normal, healthy behaviors, which I won't go into here, it relies on a primarily medical definition of mental illness. It does not place a diagnosis in context with the patient's environment or upbringing, etc., or even with their experience of their symptoms.*

That would perhaps be tolerable, but . . . the DSM does this by relying on a purely symptomatic mode of classification, without taking into account underlying neurological/biological causes – different things may cause similar symptoms. So, it reduces mental illness to medical causes . . . but doesn't then require there to be a common cause. Disorders are defined by symptom clusters, and not by actual, you know, hard data about neurotransmitters, brain activity, and so forth.

To liken it to something more familiar, chest pain might be caused by blocked blood vessels in the heart, or might be caused by acid reflux. If we were working by the DSM model of diagnosis via symptomatic classification, they would both be the same, yet I am sure every single person reading this understands that a heart attack and heartburn are not at all the same thing. Classifying them under the same category and treating them the same would be disastrous. (The linked article uses the exact same example, yes. Because it's perfect.)

The more we learn about mental illness, the more we learn that it is a tremendously complicated thing. What seems to be one category of illness (depression) can actually be two or more conditions which appear similar but stem from very different biological causes. Depression might be caused by a lack of serotonin. It might be caused by a lack of dopamine. It might be caused by a thyroid imbalance. There is more than one chemical irregularity responsible for the set of symptoms we call "depression."

As an example from my actual life, until recently, bipolar disorder was not divided into bipolar I and bipolar II. There was just bipolar I, which is the classic "manic-depression" that everyone's probably heard of. You didn't get classified as bipolar unless you had manic states. Because this automatically excluded people whose bipolar disorder skewed toward the depressive side and seldom or never ticked into the manic, or excluded people who didn't recognize mania for what it was, bipolar II was often diagnosed as unipolar depression.

When you treat bipolar II like unipolar depression, you can get a very sick and possibly dead bipolar II person. At the very least, you get a person who doesn't get better, because bipolar disorder does not just go away. SSRI drugs, often the first line of defense against depression, usually do not work on bipolar depression. You can see why this sucks.

This mistake is part of why my mother was never diagnosed properly, and why her depression was never managed. She suffered needlessly because of it. For a long time, I did, too. There are ugly real-world consequences to the symptoms-only approach. Not just human suffering, but jacking up data that could have led to better treatments.

Imagine all the bipolar II people who were thought to be depressed who were doubtless included in data collections, in experiments, altering the results. SSRIs don't work on bipolar people, but bipolar II people totally made it into SSRI testing. We can't know what kind of effect this has had. We can know that it isn't good. It's not leading to better drugs. It's not leading to better treatment. It's leading to mistakes. It's leading us to ditch treatments that only work on 10% of people with a particular symptom, when those 10% are mostly people with a totally different underlying condition. That treatment, applied only to the people with that condition, might be 60% effective or more. We have lost opportunities because of this. It is a certainty.

Back in the dark ages, we went at everything symptomatically because we had no way to understand what was happening inside us. We thought that fevers were caused by poisonous emanations from the earth, or evil spirits. Medical treatment was often "bleed more, poop more, puke more, one of those will make you feel better." Well, now we understand things a lot more thoroughly, and we acknowledge that treating the root cause of a thing is better than going after the symptoms and not resolving the issue. Why address lethargy, weight gain, depression, constipation, high cholesterol, and infertility with who knows how many drugs and treatments when you could just treat a simple thyroid hormone deficiency with one very cheap and easy to obtain drug?

This approach has not really spread to mental health yet. Frankly, that's because we do not yet understand the causes well enough to treat them. Without understanding the causes, something like the DSM has some value, diagnostically. It gives us something to go on, and its not completely horrible or inaccurate or anything, just inadequate and far too broad. Clinging to it is unjustifiable.

NIMH's new protocol, the Research Domain Criteria project, or RDoC, is not a new classification system, it will be the framework for gathering data to fill in the gaping holes in our understanding of how mental illness actually works.

Essentially, NIMH, which carries out a great deal of very important mental health information-gathering and research, is jettisoning the DSM as a classification system for purposes of that information-gathering and research. Currently, the DSM classifications are used when researching mental illness, which biases results inherently in favor of those classifications.

It is not going to transform what doctors do and how they treat mental illness starting tomorrow. What it will do is lead us to a better understanding of mental illness, and over time that will lead to radically better treatment.

This is a big step forward for mental health research. In my opinion, we will start seeing results surprisingly soon, as the first waves of research yield more accurate information. There is so much we don't know that increasing the data set even a little bit is going to improve things.

I'm excited about this. I look forward to seeing what new things we learn.

(The fact that NIMH's announcement comes only a few weeks before the DSM-5 is released amuses me.)

* Example: I "hear voices." Also, I am sometimes other people, a little bit. The DSM doesn't acknowledge those things as a deliberately and carefully cultivated coping mechanism, only as a bad thing indicative of other bad things. In context, it is healthy. In the book, it's pathological. Regardless, it's a sanity-saver, and one I continually seek to reinforce. Doesn't matter how it looks on paper. Say hello to the boys. They keep me safe.

X-posted from Dreamwidth. Comment count: comment count unavailable
brightlotusmoon: (Snow White Blood Red Dragon Witch)
I often "cross post" between here and Facebook, since sometimes stuff I say there, in increments, can be transferred here as stories and ruminations.

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

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

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

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

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

Also, in May I have my first appointment with a licensed craniosacral therapist. Having had craniosacral therapy twice, with extraordinary results, I am eagerly anticipating this.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
Also, my knees are still howling.
Actual conversation:
"Oh fuck, my knees hurt," I sobbed.
"Well, yeah, it's gonna rain tomorrow," Adam said. "It's your arthritis."
No!" I stomped my foot. "I don't have arthritis. I can't."
"Yeah, you do," Adam said. "Just admit it. Go get the test and get it over with."
"I don't wanna! I don't wanna add it to my list! There is already 19 separate disorders on that list" I whined.
"Honey," Adam said, "It's not a checklist."
"It is to me," I said flatly. "To me and all my doctors. It's a piece of paper in my wallet."
"Fair enough," Adam said. "But you know I've had arthritic fingers since I was fourteen."
"I know," I said. "But I don't have arthritic knees!"
Adam gave me an exasperated smile.
"If I keep saying it, maybe it will go away?" I peeped.
"Joanna..."
"NO. I don't have arthritis. La la la la..."
"I love you..."
"My knees fucking hurt."
"Go take your Tylenol Codeine, sweetheart."
"Nnggghhh..."
I still can't face that test. I don't know why. And my knees won't stop hurting and that won't change anything.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
Every time I think, "But I don't WANT to be in this much pain and exhuastion!" that damaged part of my brain with all that dead white matter points and laughs. Neurology likes to make things that much more difficult. Oh, whatever. This has been happening since I was a baby, it will keep happening, and I already know everything I need to do to manage it.

And that right there brings me to this one thought that keeps circulating. The idea behind "person first" language in reference to disabilities. Me? I am against it for my own self, personally, and I finally found a comment that explains why:
"Careful with the semantics. A lot of disabled people object to 'person-first' language because it suggests their disability is a wholly negative thing that should be peripheral to who they are. I usually refer to myself as an autistic person because autism is not a disease or something to be ashamed of. It's just how my brain works, and it's an integral part of who I am. Yes, it's a label, but one that I accept and am proud of, much like labels of race, class, gender, and my family's national origin. To compare disability to, say, cancer has some very problematic implications."

I honestly do not know if it makes a difference if someone was born with disabilities or acquired their disabilities. But I do know that the majority of my acquaintances who acquired their disabilities prefer "person-first" - and often admonish anyone who doesn't, including me. I have very few friends who were born with their disabilities, but I do wonder if they would view "person-first" as a negative connotation. I wonder if it may be because people who were born with it consider it literally part of them, while people who acquired it see it as wholly unwanted since they were "just fine/normal/ordinary/etc" before they became disabled. It is a very interesting thing to think about! I can only speak for myself - aside from those who I know who agree with me. For example: a conversation I had a couple of weeks ago with a friend. He had acquired neurological damage from a car accident and one arm has been semi-paralyzed for several years while his doctors work on treatments that will help him use that arm again. Before the accident, he had been extremely active in the military, in martial arts, in sports. He said, "No, I am a person first, I am not my disability. And so are you. You are a person with disabilities" I said, "Actually, I don't know what it's like to not live with disabilities. My disabilities technically happened while I was becoming a person." He blinked, tilted his head, stared at me, and said, "Huh. Interesting." I said, "At some point, you may regain the full use of your damaged parts and will no longer be disabled. That won't happen to me. Ever. This is who I am. I am both a person with disablities and a disabled person." He said, "Okay. I can absolutely understand that, in your case." "Yes," I said, "In my case. Not everybody's, though. But it's something to think about."

And there is... well... this:
Disabled people are people, and that means that can be rude, dickish, prejudiced, judgmental assholes, as bad as anyone. In fact, yes, someone them do it deliberately, because people coo "Oh, they're disabled, it's okay, the poor things! They don't understand what they're saying!"
It is almost as awful as the "disabled inspiration porn" - example, "Look at that disabled person! She is so amazing, so strong, to do what she does while being disabled! We should all look up to her!"
No. Oh, gods, no. PLEASE don't look up to me. Look, if you want to call me inspirational, refer to the strength and power I have because of my disabilities, not despite them. I may be physically and neurologically weak, but I am incredibly strong in my soul, spirit, etc. It's just how I live. I live WITH my disorders, I don't live DESPITE them. I work WITH them, not AGAINST them. I am constantly and consistently COMPROMISING and COMPENSATING. And guess what? I HAVE LIMITS. Don't dare ever tell me all that bullshit about how "the only disability in life is a bad attitude" or "the only limits are in your mind" because fuck you. I have limitations, and the best I can to is to keep raising them, keep increasing those limits, instead of pushing or breaking them, because trying to break my limits is stupid and will leave me exhausted, drained, agonized, and unable to function. But raising my limits just means that I can go on a little longer without collapsing. That's all.
And this is not saying "I can say this stuff because I'm disabled so it's not discriminatory, ha ha!" This is saying "Many disabled people use their disabled status to be fucking assholes and they know it. Don't think I'm a sweet angel just because I'm a fucking cripple." I really do my very best to NOT be an asshole. Because it's a terrible thing to do. We're all people, we all screw up. But we also do the best we can. Most of us.

I still don't understand why so many people so desperately want to shift semantics like this, especially those who are not actually disabled. Then again, I don't get out much. I was late to the party.
brightlotusmoon: (Pixie Model 5)
I know it's not a good idea to post about food and health issues here, so I shall start by begging you to not feel jealous or mutter "I wish I had that problem" because you don't want it, you really really don't, because it's creepy and awful and disastrous and it makes me cry.
I'm 33. Who knows what will happen if I can't control this?

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

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

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

Okay, I'm finished.

Please return to your lives as scheduled.

Also, I'm sorry.
brightlotusmoon: (Default)
Cats, cuddling, clonazepam, carisoprodol, chocolate, cheese.
My amygdala will probably be freaking out heavily for the next three weeks, but the rest of me seems to feel okay.
Unless I count the daily simple partial seizures, exhaustion, true muscle weakness, inability to concentrate, headaches, xeroderma, bruxism, and lack of balance.
This may be why I keep watching all of Futurama on a steady loop. People who tell me not to watch a single television series over and over really don't understand how my brain works.

Also, this is sort of what it looks like on the inside of my mind right now.

ChakraCherubim
brightlotusmoon: (Default)
For the record:
Fibromyalgia is Morbo (Futurama). Epilepsy is Kahn (Star Trek). Cerebral Palsy is The Cybermen (Doctor Who).
I may eventually give nicknames to the other conditions, but right now I have a migraine, joint pain, muscle stiffness, mild fever, xeroderma, sciatica, and vertigo. So... maybe later.
brightlotusmoon: (Default)
http://community.livejournal.com/cerebral_palsy/153359.html
Link within a link.

When you have medical conditions that are not always obvious to the naked eye, what can you do? How does it look in the eyes of the legal system, the government, the public, the individual, the afflicted? If there seems to be no true evidence to satisfy, yet the problem is there, how can we work with it? How can we help others see what doesn't seem apparent?

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