brightrosefox: (Default)
The replacement medical dog tag, which features the main medical conditions that essentially encompass most other syndromes - cerebral palsy and autism have so many comorbidities and associated disorders that most medics will get the idea.

medicalalertpendant


It came via a website called Sticky Jewelry. They're pretty awesome, and affordable. This came with a free cleaning chamois cloth and a free medical identification card on which to fill out vital information, like emergency contact, physician phone number, prescriptions, blood type.

The pendant I attached it to is an Etsy-bought custom-made ouroboros pentacle with an amber stone. It has a lot of power for me. Also, it's a fun stim.
brightrosefox: (Default)
...I do need to get an account of my own, mind you.

A friend posted this, so I'm sharing.

****

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

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

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

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

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

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

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

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

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

***
brightrosefox: (Default)
Stuff I haven't really talked about lately:

1. Crooked Cerebral Palsy Compensated Fake Yoga, aka Modified Zen Meditation Stretching, for ten minutes, because what my body attempts to do is not any kind of traditional yoga, although it is hilarious and laughing at myself is good. (Which is also why I rarely discuss it - half my friends list is full of actual yoga enthusiasts who practice actual modern yoga. And since I don't believe yoga actually truly cures anything, let alone cures me, I stay quiet. It's like medical cannabis. If people would stop saying it's a panacea for every illness ever, I'll talk about it.)

2. Allergies. Soreness. Stiffness. Burninating. Did I say that loudly enough? And, naturally, fibromyalgia means everything GOES TO ELEVEN. And oh, yes, that's a thing. I've started feeling embarrassed about the word Fibromyalgia, since so many people associate it with whining and inability to "slap a band-aid on it and walk it off weakling" so I've started just calling it Myalgia, which is literally what it says on my neurologist's paperwork. Like, when she sent me for bloodwork, the paperwork said that my active illnesses included Intractable Epilepsy; Insomnia Not Otherwise Specified; and Moderate To Severe Myalgia, Connective Tissues. Apparently there are other paperworks that list not only the Cerebral Palsy, but the Periventricular Leukomalacia, the Autism Spectrum Disorder, the ADHD-Inattentive, the Clinical Major Depressive Disorder, the Multiple Anxiety Disorders, the Social Phobia, even the Tokophobia. Plus, there's a note saying that the Myalgia is causing gradual destruction of gray matter, except in medicalese. My neurologist and my pain management doctor are genuinely stunned and impressed that I'm living quite well on the "small doses of drugs that rarely need changing." I've been called Fascinating and Fun To Work With (I make doctor laugh a lot).

3. Dietary Stuff. I have cheerfully denied everyone throwing fad diets at me, even if they feel that those fad diets might actually be real illnesses and food allergies. The only food components that bother me are large amounts of pure soy and kiwi fruit. Plus, I just plain don't like corn or maize. Going gluten-free did nothing, I adore dairy, I crave red meat, and bread is good. And I dislike kale. I love seaweed.

4. Pharmaceutical drugs, dietary supplements holistic treatments. They are all saving my life, and everything is both poison and magic. Shut up.

5. Lifestyles. I like my solitude. After watching MLP's "Maude Pie" I have concluded that I have Maude moments as much as I have Pinkie moments, in my head, and my Fluttershy moments and Twilight moments are balanced. My friends by now understand that I'm good at switching back and forth quickly. Currently, I am both Maude and Fluttershy. Deadpan and flat affect, shy and soft, desperate to keep the peace and remain stable.

And now, I shall write a thousand poems about rocks.

Seriously. Maude. This is a stand alone episode, so anyone who has missed the new season will be able to watch.
https://www.youtube.com/watch?v=48kyeZ02RAk
brightrosefox: (Default)
Oh! Oh! I forgot! I'd promised a few people here that I would let them know how I was doing with super high doses of pure Omega-3, particularly DHA. As it turns out, calamari oil is much better than krill. And so, I've been taking calamari oil, which contains 500 mg DHA, and 125 mg EPA, which I think is the highest one can go so far.
https://www.swansonvitamins.com/swanson-efas-super-dha-500-from-calamari-30-sgels
It's officially been one month, so I think it is okay to report my findings so far: I feel as though my brain is, for lack of a better term, nourished. My concentration has gotten easier. I had been considering going back on an ADHD drug for ADD-Inattentive, but the Calamari Oil seems to do what Strattera did all those years ago. Neurologically, I feel, well, hmmm... padded? This is so hard to explain! Neuromuscular issues seem slightly easier. Like, I am starting to unconsciously use my left hand more often for "simple" tasks like pouring liquid, picking up small objects. I can't insert and turn a key in a lock, and I can't squeeze any exercise equipment, but the little tiny compensated things are starting to feel smoother. Does that make sense? It really does feel like a kind of CNS nourishment.
I'm including the link to the product I'm currently taking. There is another brand via Vitacost, called Doctor's best, that offers the same dosage at different prices with different pill counts, but this is what I'm using. I even punctured a capsule to see how my cats would like it. Luna and Calliope seem intrigued. I may just brush it into Jupiter's fur, since he has dry skin.
There have been some studies showing that some brain injuries can be partially treated with extremely high doses of pure omega-3, so I'm happy to make myself a self-advocate subject. I don't know what this will mean for my CP as a whole, and I am not expecting nor hoping that anything major will happen. But I do like this feeling that my neuromuscular issues might ease up just enough to let my hemiplegia become less spastic...
brightrosefox: (Default)
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.
brightrosefox: (Default)
Thanks to another trip to Michael's craft store, I have a new set of Faber-Castle Pitt artist pens below Fine, and Calliope has a Beanie Boo dolphin to cuddle, which she has been doing. I have an owl, which seems to work well as a knee pillow.

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

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

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

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

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

So, my fellow chronically ill and disabled folks, how do you react to such a comment? Is it an insult or backhand compliment for you? Is it a lovely compliment? Do you view it differently when it is said by other chronically sick and disabled people as opposed to able-bodied people?
brightrosefox: (Default)
BTW, I'm officially on MediCare Part B (retroactive as of November) and earlier my Part C Aetna Medicare ID Card arrived, which won't be active until January 2014. It is all good. It will still save over a hundred dollars a month between all insurance and drug coverage. All my doctors are covered, all my drugs will be cheaper, and I have carefully read, re-read, and examined all the paperwork with a magnifying glass (no, really). So December's SSDI check will be less two months' insurance payments, and then January's check will also be less the Part C payment, but it is all good, because it is still cheaper than what I am paying under MHIP Carefirst in general. I feel... well, I don't know if "lucky" is the best word. But it is not as bad as it could have been. I mean, I also ride Metro and local bus transit for free thanks to being disabled and a member of Metro Access paratransit system.

Some fully able-bodied people like to scold me for feeling grateful that I am disabled enough to qualify. It's not about that 'grateful' feeling or that whole "skip to the front of the line" thing. It's not about any of that. It's... I dunno. It's about taking whatever disordered damage you have and turning it into a personal individual advantage that works in your favor. It's about accepting and embracing the awful pained cracked parts of life and seeing that they have been opening all these shiny doors, after slamming closed other doors so furiously that the whole building shakes and walls crumble. You may never be able to walk through those slammed locked bolted doors that most able-bodied people get to glide through easily, but you have all these other doors opening just for you, ready to lead you to places where you, personally, will feel more comfortable, accepted, embraced, and understood on a level secure with your disordered damage. It's not your fault, and the places these doors lead you are fully aware and have already set up a spot for you. You are always safe in those spaces in between.

Like... having mild disabilities. For example: Having mild cerebral palsy is like being in interstitial places constantly - interstice being a small space that lies between things; a space that intervenes between things. Neither completely here nor there. A space in between. A crack in the continuity. Mild autism in that nobody believes me until they spend a few word-filled hours trying to decipher my brain languages. Mild ADD and mild OCD and mild/moderate but fierce migraines and headaches and mild/moderate but fierce epileptic complex partial seizures and mild/moderate but fierce chronic pains and mild inflammations and and this and that. Mild mild mild. Haunting and interstitial. Never bad enough to cause me to be rushed to a hospital, never simple enough to merely pass by with a handwave. I am those spaces in between, as are many, many, many people with certain neurologies. We are in those cracks. Oh, they say, it's all right, they're not too bad, they could be worse, they say. And then what?

Any fellow disabled folk and people who understand want to chime in? Am I making enough sense here? I feel like I am.
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)
This has been running around my head for a few weeks and I've been wanting to get it just right, so other people with disabilities and chronic illnesses can know that they're not alone and that if they're afraid, we can be afraid together.


To quote a friend:

"I’m not very functional. If you see me out and about, I’m either doing well, or I’m going to pay dearly for it later. Probably both."

What this means is that on the surface I might appear perfectly fine and normal in every aspect almost all the time. What this means is that as time goes on, I'm going to be worn down, exhausted, and unable to properly, correctly finish all the things I was doing well.

What this means is that if I have been able to recite entire poems, paragraphs, television dialogue, and instruction lists, I will be unable to do so when I go into a fog. I have been accused several times of lying about my memory disintegration, because if I can remember specific things constantly it must mean I have a perfect memory for everything. Here is the thing about the human brain and memory: Memory is insane. It is fickle. It lies all the time. It writes fanfiction of your life. Just because you can quote everything said by a character in a television show does not mean you have a good memory. It just means that when your brain is in a good place, you can quote everything said by a character in a television show - although these days I cheat by looking it up on Google because I actually can't recall everything. It just looks like I can. That's the trick. I seem so normal.
The point is, when someone is diagnosed with brain disorders such as memory disintegration, it means that it is happening now. Everything is happening now, has been happening for years, and will happen until death.

I have been accused several times of lying about my level of physical disability, because if I can walk and run without a cane for a few hours it must mean I don't actually need the cane or any sort of assistance. I have been accused several times of deliberately wanting my symptoms to get worse, of living inside my disorders so that I don't have to face reality, which aggravates and irritates me, since it is the exact opposite of what I actually do - reality is happening no matter what I believe, and my reality is that I am permanently disabled and I am not getting better. The thing about cerebral palsy is that patients as young as twenty-five will begin to feel physically aged due to wear and tear on their muscles, joints, bones, and nerves. This is called Post Impairment Syndrome.To quote: Post impairment syndrome is a combination of symptoms that affect adults with cerebral palsy. According to the National Institute of Neurological Disorders and Stroke, this combination includes fatigue, pain, arthritis and weakness that is often a part of daily life. This symptom is due to the muscle abnormalities and bony changes that happen as you age with cerebral palsy. You can use three to five times more energy each day than an able-bodied person just to complete your daily living activities. This extra expenditure of energy combined with the spasticity and extra wear on the joints is a hallmark symptom of adults who suffer from cerebral palsy.

What this means is that when I say that I feel sixty at age thirty, I really mean it. I am not exaggerating or subconsciously causing it. What this means is that no amount of positive magical thinking and no amount of disbelieving my conditions will make me better; I might feel better for a while after psychically insisting that I don't hurt too badly, but eventually that will stop working and the symptoms will strike even harder, especially if I have been highly active from my positive magical thinking and my belief that I was not in pain. What this means is that I can decide my symptoms are gone and my bodily systems will just laugh; for someone like me, there is no power to make myself not have symptoms. What this means is that my problems are not temporary inconveniences that I can massage, medicate, meditate, and wish away... when I explain that I feel decades older, I really mean it, and I cannot slowly heal myself just by forcing myself to feel better.

Having a permanent physical disability means that I cannot just recover easily. Having a chronic pain disorder means that I cannot just force pain to disappear. What this means is that no matter what, I will be living alongside my medical issues.What this means is that I am never the same from one minute to the next.

What this means is that I really need to quit talking about my health conditions with people who don't want to know. I make too many assumptions when acquaintances and random people ask about my conditions. I have to remind myself that they don't want to hear about it. I have to remind myself that people will start thinking that I do want to live inside my medical conditions if I talk about them in so much detail. I have to remind myself to simply say things like, "I am reasonable" and "I'm disabled with cerebral palsy" and to expand only if asked. When I get scolded, snapped at, accused, and told that nobody wants to know about my medical issues, I often don't understand what is really happening. I need to remind myself that social interaction means holding back. And this is why most social interaction makes me want to curl up and hug a book, because books don't scold me for trying to talk about myself. Also, cats. Cats just want me to pet them.

****
Long quote, which I am quoting because many people I have met over the past few months literally do not believe that my health is declining on its own, and they literally believe that I could just make myself feel better with magical thinking, ie positive thinking, law of attraction. This is also why I've joined support groups. Being told "You're making your disability worse on your own" is starting to chip away at my optimism. I'm making this public so those new acquaintances can read and come to their own conclusions.

All Americans are living longer than people did years ago, and people who have cerebral palsy (CP) are no exception. For people with disabilities, however, living to an old age is a new phenomenon. We are just now learning what it means to grow older with a disability.

Although much of the information we are gathering on the topic is discouraging, there are strategies to make aging with a disability a more successful experience. “I have seen many advances in diagnoses and treatments since I was young,” said Bonnie Witt, an adult who has cerebral palsy. “People with disabilities are living longer, more productive lives. Doctors who treat adults with disabilities are navigating uncharted territory. This is a fairly new area of medicine, so—in a small way—we are pioneers.”

Symptoms of Aging Appear Earlier

People without disabilities reach the peak of their physical function between ages 18 and 25. After that, their abilities decline about 1 percent per year. At age 70, therefore, people without disabilities are likely to have about 50 percent of their top lung function, 50 percent of their peak kidney function and so on.

Even before their abilities begin to decline, however, people who have disabilities typically don’t reach the same highest points of physical function that people without disabilities do. And when the decline begins, it might be steeper in people who have disabilities. Author and Professor Bryan Kemp reported that people with disabilities show a decline of 1.5 to 5 percent per year after reaching their highest level of physical function.

In addition, people with disabilities experience aging-related changes years earlier than their non-disabled peers do. Although study results vary, aging-related changes generally occur 20 to 30 years after the onset of a disability. For people who have CP, such changes can occur in the 20s, 30s or 40s.

Pain Is Common

Pain is the most common initial problem for adults with CP. Studies show that most of the older adults who have CP report daily pain. One-third report constant pain.

The hip, knee, back and neck are the most common sites of pain. Medication is the most common treatment for pain. Studies show that 92 percent of people with CP report that exercise helps their pain symptoms, but only 49 percent report that they exercise even infrequently. People with disabilities use other methods of pain treatment, such as biofeedback or counseling, less frequently than people who don’t have disabilities do.

People with CP who walk have the most problems with pain, because their gait and movement patterns cause abnormal wear and tear on their bodies. That leads to arthritis. Twenty-five percent of people with CP who walk as children lose that ability as teens or adults. Others stop ambulating in their 40s because of pain. For all people with CP who continue to walk, distance is compromised—in other words, they can’t walk as far as they used to.

Additional Issues

People who are in pain typically experience more fatigue than other people do, so they tend to do less and rest more. When people are less active, they lose strength and endurance. Less strength means less ability to perform necessary or enjoyable activities, and it results in a decreased ability to care for oneself. That, in turn, can lead to depression, a need to ask more from family members or a need to hire more assistance. The effect on relationships and the corresponding financial consequences are obvious.

Falls are very common in adults with CP. Reports show that 40 percent of adults with CP fall at least once each month, and 75 percent fall every two months. In fact, falling is so common that most people do not even think of reporting the falls to their doctors.

Because the risk of breaking a bone increases with age, it’s important to improve strength and to plan movements, as much as possible, to reduce the incidence of falls. Other problems that occur in people who are aging with CP include increased bowel and bladder problems and more joint contractures.
***
brightrosefox: (Default)
I went physically to the local Social Security Office this morning just to make sure they were processing my Medicare Part B request.
They said everything will kick in come December 2013. And that while my December SSDI check would come minus the Medicare monthly premium, they would retroactively date it all back to the beginning of November. As soon as I get my new Medicare card, I can call Medicare-Aetna, get my Part C in place, and have everything done. Part D will be included in Part C. I have already checked with Medicare Aetna and all my doctors and my pharmacy, and all will be accepted. Then, once I've made absolutely positively certain that things are in order, I can cancel this expensive private CareFirst insurance, switch all my doctors and prescriptions over to Medicare and Medicare Aetna, and save nearly a hundred dollars a month.
*Fluttershy YAY*
And here I was worried it would be too much of a terrible hassle.
Wait - knock on wood. It's Medicare. Breathe. But, I mean, none of my medications nor specialists fall outside of that... that... what's it called... that area where they go "Ehhhnnn, this might not work." Everything looks great on my end.
*Fluttershy YAY?*

Also, I have a Twilight Sparkle Beanie Baby.

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

We've made our Thanksgiving plans. Once we get our house-sitters settled, we will go to Long Island, The East End, Suffolk County, The Hamptons, Southampton, Sag Harbor, my parents' house. And we will rest and relax and I will gorge on New York water, New York pizza, New York bagels. Oh yes.
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I must quote this, because it struck me deeply and knocked me over and stunned me and amazed me.

*****
From: [livejournal.com profile] naamah_darling.
I don't know if I can explain it, any more than I can explain why I find anyone amazing, but you're open about what you are and what you are going through. You don't expend energy trying to be normal, and you never seem to even want to. You aren't afraid of what you ARE, even when the things that HAPPEN, sometimes because of things that you are, are scary. You seem sometimes scared of things that happen or that you (body/chemistry) do to you, but not scared of yourself, really. You're fierce. You're . . . we don't have a word for it. The way in which children and animals are alike, that we *call* innocence, but isn't innocence, it's just a kind of transparency and guilelessness-without-cluelessness. You're contradictory, and this isn't a problem. You've imposed . . . not order . . . but some sort of reason and meaning and story on the chaos in your life, and you have made beautiful things out of it inside you. You persist. You change, you are not destroyed. You're mercurial, joyful in the sense of being flat-out at everything you feel and not in the sense of being always happy, you're generous, you're very kind, you're forgiving. You aren't afraid to spend a lot of time working with and understanding yourself, because you know that is important. You are more people than just-the-one-you you. You are comfortable working with shape and meaning and color, when words aren't good enough. Whole parts of you are indescribable. You're a *good person*, while still being strong and fierce, and that is overwhelmingly obvious to anyone with half a synapse. You belong in fairy tales, like so many of the rest of us, writing better endings. You're kind of amazing.

And tangentially, THAT is why when people are all like "disabled people are so inspirational!" I get kinda pissed on the grounds of "THESE PEOPLE THAT I KNOW, they are SO MUCH MORE than a stepping stone for your ego or a friendly reassurance that hey, if those people can manage to get themselves to a beach/a gym/on a horse, you have a good chance of not being an utter asshole failure your entire life, and accomplishing REALLY important things!" and at the same time am like "No, really, we ARE inspirational; you have no fucking idea how 'inspirational' the disabled folks I know are . . . and if you had one iota of their self-awareness you might not be saying such asinine crap."
You want to find disabled people "inspirational?" I'll accept that . . . if what you are finding "inspirational" is their honesty in speaking out and sharing their opinions, their desire to help others, their weapons-grade swearing vocabulary (so many disabled people I know HAVE THAT, it's glorious), their ability to incorporate something literally disabling into their self-image and life when our culture gives them limited scripts and limited opportunities, their persistence in navigating the obstacles placed in front of them not by what they are, but by how our culture and the many dickheads in it unwittingly and often VERY DELIBERATELY make it harder to do so, the fact that they are often poor as dirt but are the most generous people you will ever meet, that they have known pain and so they often know great compassion.

*THAT* SHIT IS INSPIRATIONAL.

So is persistence, yes, which is why I am always impressed when I see someone who has had to deal with major issues accomplish something that is made particularly difficult BY those issues SPECIFICALLY, but when that sort of thing is nearly always ONLY praised in the context of visible, physical disability, or when it's some completely unrelated shit, that pisses me off.

It's like . . . people are apparently impressed by when disabled people do anything *while smiling*, because that indicates the triumph of overcoming our miserable existence? Or that we have a good enough attitude to forget, for a moment, that we are fucked up and are supposed to be miserable constantly? I don't even KNOW. But these same people aren't finding me inspirational when I'm at my blackest and am hanging on by my last claw, which is arguably when I am being my MOST BADASS. That's when I need to be pulling up my bootstraps and thinking my way out of it with sunshine and baby kisses. But an ungroomed, exhausted, surrounded by laundry, not moving, fat, blotchy, cat-strewn DEPRESSED person staring at a computer screen or TV or at nothing in particular doesn't look good in a facebook picture. "This person: probably exercising more willpower not to give up hope and eat a bullet than you will exercise at any point in your whole life. Stop. Bitching. That. Your. Yoga. Is. Hard." <---- Nobody wants that. (And, while maybe sometimes true, it's also kinda dickly, because Suck Olympics are uncool. The things that have made me most miserable sometimes do not seem to be proportional or make sense. To wit, the hour-long crying jag I had when my last pet scorpion died, years ago. Dude, I cried less painfully when my GRANDMOTHER died. What even the HELL?)

All I know is that the shit people usually talk about as being inspirational is not really very inspirational to me. Like, *if* it's true that Chris Evans really does have anxiety/panic attacks (never read reliable info about how severe his "problems with anxiety" are, though he apparently went into therapy) and he still navigated two MONSTROUS blockbuster movies and associated press events, I find that totally fucking impressive, because I KNOW WHAT THAT IS LIKE, and I know I couldn't handle it. And that's the stuff people don't seem to understand. That's the stuff people latch on to and *make fun of.* Because people who don't Get It can be real dicks about that stuff.
*****
I truly believe that if Namaah and I lived closer, we would see each other several times a week and never get tired of each other's company.
My husband once told me that everyone has multiple soulmates, that a soul can be split into many different parts. I think Namaah may be one of my soulmates. It took me five years to realize that, and that's okay. I like to take things slowly.
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I stretched the hell out of my back and legs and arms. It was lovely. I did it my way. I am very pleased and very satisfied. I won't discuss the various burning barbed wire pains that are distracting me even through the codeine, but I will talk about the beautiful meditative exercises I've been working with. Peaceful, serene, tranquil, calm, relaxing, refreshing, fantastic in multiple ways. The scene always changes, but always appears Zen in some way.
I had mentioned that my human coping mechanisms, my spirit guardians, had begun communicating with each other deep in my brain without my conscious knowledge, which leads me to believe that parts of my brain are starting to come together as part of the story, as my unlimited imagination and writerbrain is starting working on a whole new, amazingly unique, private story all on its own. No wonder I have been working on Amber's story beyond these bits of my brain. Amber has also given me free reign to write her as a fully developed character and not just a created coping mechanism.
In general, I am just... very happy.
And the funny thing is that I am in a depressive episode. I have all the symptoms, and I am quite conscious and aware. But I have things that are helping distract me: Talking about my imagination and my creativity, talking about the triggers for my panic attacks and my simple seizures, talking about comedy TV shows and powerful fiction books. Somehow it all is able to keep the major depression away, although it is a very intense fight. Sometimes I find myself weak and struggling, even physically, as thoughts of worthlessness and hopelessness, frustration and terror, pessimism and guilt all slam into me and my wall and my shell.
I suppose I could say I am happy. I feel happy.
But... what is happiness?
"Happiness is a mental or emotional state of well-being characterized by positive or pleasant emotions ranging from contentment to intense joy." Sure, I feel those things. However, there is a strong undercurrent of the exact opposite.
Brains, man. Brains are wild. Brains are weird. Brains are so complex. One day, I want to have an MRI and see exactly what my brain is doing. I want to sit with multiple brain specialists for hours on end, and just... talk. I want to talk about my brain.
Brains, man.
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You know... between strangers still insisting that they know better than me and my doctors about my medications and disorders and this new bizarre, creepy, fucked up conspiracy theory about actress Angelina Jolie, I think I need to put up all my psychic shields whenever I am on Facebook.

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

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

I'm so sorry to harp on all this again. But I cannot walk away from these verbal assaults. I keep trying. I just want people to leave me to my own health knowledge. I am leaving them to theirs.
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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
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)
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.
brightrosefox: (Default)
Oh.
I see.
Thanks, brain chemistry and such.

Hey, other people with clinical major depression: It really does get better... but it is a long, long, insane, wild climb to reach the top of the lighthouse. Best to have people who can cheer you on, hold you when needed, remind you why you are awesome. Because the beasts below you deep inside your brain probably will not let you go easily. But that is what proper weaponry is for.

*is wielding drugs and treatments and exercises like swords and spears and possibly like directed-energy weapons, because phasers are cool*

(Look, I know not everyone is big on getting treatments like psychoptherapy and drugs whether pharmaceutical or herbal or holistic, but something needs to happen. It is a long fall and it is a long climb. And being perky with happy thoughts does not count as actual medicine. No, it really doesn't, sorry.)

Sigh.

The anxiety attack was brief and was about nothing, and supplements actually took care of it. The little monster just didn't have much fight in it. But the depressive episode hit like a wild thing, teeth gnashing. No matter how loudly I growled back at it, the beast grew, until it filled the rest of my brain and paced. And so I keep moving, fighting, handling. It is how I was born.
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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.
brightrosefox: (Default)
http://truth-out.org/opinion/item/14466-i-am-not-a-camel-but-i-do-have-epilepsy

What she said:
And then there's the other, less dramatic stuff - the "abnormal activity" buzzing around my brain on "normal" days. Since I had my first seizure, that "me" who floated outside myself and saw a separate version of reality has never really gone away. When I'm not concentrating hard on something - an engaging conversation, a good book, a challenging project, my wonderful wedding, my fast-paced job, an adorable dog, an extremely delicious sandwich - I'm sometimes flooded with a feeling of "derealization." The world around me appears like a dream, or a movie, or a secondhand vision: a matrix inside a matrix. Sometimes, the world wiggles. At times, I think I'm seeing the fundamental unreality of things as they really are, as in the Hindu concept of "Maya," in which the physical world is an illusion or projection that must be seen through in order to achieve enlightenment.... And at times, I just want to go to bed.
***
I should add:
People have asked me, "So, does temporal lobe epilepsy affect you when you are not having seizures?" And the answer is a resounding "Oh, yes!" Seizures are just one type of symptom, after all. The brain with epilepsy is routinely being shifted in and out of fantastic and fantastical neural and neurological wormholes and dimensions, in a strange way. There is always a buzzing, a shifting sense of reality. Colors, smells, sounds, shapes, sensations, flavors, textures. Particularly for epileptics with other disabilities or comorbid disabilities, like cerebral palsy or fibromyalgia or nerve damages.
I rarely tell people about the everyday life of my epilepsy, because the common reactions are often variations of "Well, maybe you should change your medication or add a medication or do this or do that because that doesn't seem normal!" or "Oh, no, does this mean something is wrong with you?" Sigh.
So, I have this damaged brain. Stuff happens in my brain. It is my brain and nobody else's. I talk to my doctors and specialists so often that they know me just by my voice on the phone. If something goes wrong or if something doesn't feel right, I take action. I don't say anything much to people who are not medical specialists or medical personnel, because, you know, reactions. But yes. Yes, I am constantly, consistently, and chronically affected by epilepsy. My temporal lobes, my amygdala, my cerebral cortex, my hippocampus, and the various neurons all involved are affected; and thus my perceptions, orientations, sensations, emotions, neurological functions, and memories are affected. When I seem to be drifting in and out of reality, I kind of am. It's not painful, it doesn't mean something is wrong, it certainly does not mean that my medicine needs changing. It's just my brain. Mine, and nobody else's. I cannot be compared to other epileptic people, and other epileptic people cannot be compared to me. But we all have things in common: Our brains are totally weird, fantastical, creative, artistic, and awesome. Most of the time. The Hindu concept of Maya does indeed apply. Also, as many people have told me, some people pay good money to feel the way I feel. *shrug*
It's just my brain.

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