brightlotusmoon: (Asha)
My general physician refuses to referr me for hyperbaric oxygen for what I agree is totally valid reasons, unless my neurologist and pain specialist both think it's okay. I just finished a scholarly article saying that there were no conclusive findings or great evidence that it did anything for brain damage. But we'll see what the other doctors think.


Oxygen Therapy or Hot Air? Bioethicists Say Treatment Doesn't Pass the Test - NBC News.com http://www.nbcnews.com/health/health-news/oxygen-therapy-or-hot-air-bioethicists-say-treatment-doesnt-pass-n262791
brightlotusmoon: (Asha)
So, my thoughts have been spinning merrily amidst what could be a spiraling episode of... Oh, fuck, probably everything at once. After I had a chat with three doctors about the consequences of stress-related memory loss, I quietly decided to start a private mindfulness therapy, which I have only been sharing with the psychologist, for advice, while I move forward in my own brain to stop my own brain from destroying my mindstate.

Tomorrow, I see my general physician and have her write a referral for the local hyperbaric oxygen therapy center. Although it's a bit premature, as they have yet to call me back about an initial consultation. While I was filling out their online New Patient form, I started wondering if they would even take someone like me, with two dozen illness. Even though cerebral palsy is the cornerstone. I just feel so excited about it. That's a good thing. I can still most of my emotion things.

What I find beautiful and fascinating about my private therapy protocol is that almost nobody believes me. I have been stuck in something insane since 2010. Why would they believe I would "get better" now, so many years later after therapy and medications and meditative exercises? Then again, none of them have been in long term therapy or medication. It really does take many years to spur a change this massive. Hence the secret protocol, which includes a possible medication update and potential oxygen therapy.

I don't expect anyone to believe me. I don't expect anyone to believe in my desire to change with this therapy protocol. How could they? Why would they? I am the same as I was when symptoms started. But I don't want their belief. I don't really want support if there is no actual active knowledge. How can you say "Hey, I've been there, I get it, fist bump in solidarity" unless you really have gone through a similar structure of treatment repeatedly for a grab bag of illnesses that mindfuck you for no reason?
Actual legitimate question, BTW.
If you're also a parent of someone with interconnected psychiatric and neurological disorders, I would love input, because when I try to explain these things to my mom who only has hereditary ADHD controlled via lifestyle, my emotion-brain starts shutting down so my technical-brain can word at her, and I know she wants less science and more human. I'm trying. I just cannot get past that very protective mental guardian who shields emotion-Joanna from Outside. And oh, as much as I love Serena, she feels it is easier and gentler to let me sleep while she and Koan the calico kitten organize and compartmentalize all the Me. Ananta works hard enough balancing out all the neuroweird that Alicia in my private epileptic Wonderland can't reach. I haven't had much success in psychically merging with Asha. We are working out my dissociative and depersonalization episodes first.

I will do this. It will happen. Steps have been severely taken. Hard to talk. But if you think you get it, I would love a discussion via Private Message. I am willing to reveal bits and pieces of my Rebuild Joanna Brain Project to acquire tips and advice from those who get it.

Now, see, I view many people as family beyond my blood family - who shall remain the besy family I would want. Various people in my social circle - friends plus family - have always stood with me. I will always need and want that. But for those who are truly normal and looking at me with confusion, puzzlement, exasperation, fear, anger... and the type of condesencing that means pats on the head, chuckling, and "I love you sweetie. Of course you'll change." "You do nothing. You never help. You are too self absorbed, you don't think, you claim memory loss. It is all right, dear. We are used to hit. Just finish writing." Followed by another hair tousle. I'm used to it. It's routine because I am me.
I am not out to prove them wrong, not entirely. I am out to prove to myself that my neuroplasticity really might eradicate the worst of the annoying symptoms.
Maybe this whole autistic ramble came from my hope and excitement over this slow gentle therapeutic process. If loved ones want me to speed it up, I can turn away for a while to meditate.

All I know is that my own husband has been putting up with me forever, and that says something huge.

Love you, LJ family.
brightlotusmoon: (Asha)
I did not realize how weirdly difficult it can be to answer the question, "So, what triggered this C-PTSD episode and panic attack?"

I mean, how DO you explain all the fucked up, freaked out, screaming neuronal mess that can cause brief blackouts, episodes of time agnosia, obsessiveness bordering on mania, hyperventilation, emotional outbursts, etc etc etc.

And there is no one thing, two things, any things. That's why it's Complex PTSD. It can be anything and everything. Maybe it's because I read some news articles about police violence against disabled people with no legal consequence for the police. Maybe it's because a friend got triggered by their own things and during our conversation something triggered me completely innocently. Maybe it's because I had a nightmare about that time years ago when a skeevy dude tried to hurt and assault me near a shopping center and was beat up by another guy who just looked at me and said, "Run!" and I fled up the stairs until I couldn't breathe and never looked back. I don't know. I don't KNOW, guys.

You know? You know.

I have reasons for not talking about this stuff outside my psychologists and certain friends. Support is better than silence, though, and I have so much support and empathy to give, so when I need it I reach out to the friends who know.

Anyway. Yes, I took my meds. Yes, I did my exercises. Yes, I ate well enough.

And my cats have not let me out of their sight. (KITTIES)
brightlotusmoon: (Asha)
Holy random acts of kindness, Batman.
After getting my flu vaccine, I went to look at the cane rack, because they have this beautiful blue and silver one that looks like dragon scales, and I have been waiting for discounts and coupons so I could get it. The price is under twenty dollars, but still.
A middle-aged man who looked so much like Idris Elba that I did a second take, also reached for the blue silver cane. Our eyes met, I smiled briefly. He said, "You know, I bet this would make an awesome magic staff for cosplay."
I grinned and said, "Good plan! I should at least join a game just so I can brag. Or just be my paganish elf self and cosplay every day." Which was blurted out because my filter is so thin.
The Idris Elba lookalike chuckled. "I adore that idea. I just pray to all mighty Atheismo that we aren't going too deep. Like that Tom Hanks movie."
My jaw dropped. "Duuude," I said. "Futurama reference plus obscure D&D rip-off movie nee book reference? Cripple high five!"
We high fived and missed on purpose, stumbling. "Mild cerebral palsy, spastic hemiplegia" I said. "Mild cerebral palsy, diplegia mixed," he said. "And knee arthritis."
"And sciatica," we said in union, surprising ourselves.
"Fibromyalgia and epilepsy and autism too," I added.
He said, "My twin nieces are autistics! Their world is so awesome. I think they prefer me to my brother when they're in meltdowns, they talk about what's going on in detail."
"Awesome!" I said.
At this point, we had been staring at the canes and I had been avoiding too much eye contact. I was about to ask the Idris Elba lookalike about advocacy. Then I saw a gleam in his eye and sensed a topic shift. "Hey, listen," he said. "I'm a proponent of the pay it forward thing. I know we're strangers, but I do know enough about you that you really want the dragon scale cane."
I tilted my head. "Yeeeaah?"
"So, okay." He pulled some pieces of paper from his pocket. "I've got a buy one get one half off for this brand of canes. I will buy you your cane. What do you think?"
I blinked a few times. I looked at him. He wasn't hitting on me. He wasn't being creepy. He was just a fellow cripple offering help.
"Okay," I said, "thank you! That's really kind."
"Hey, the community needs all the assistance we can get from each other. Cripples helping cripples, you know?"
I smiled. "Totally."
As we walked to a register, he said, "I want you to know that I had no intention of hitting on you. I see your rings, and for all I know they could mean something else. But while I think you're a gorgeous-looking person, I have no plans on being a That Guy. I punch Those Guys on a regular basis."
"Huh?"
"Physical trainer. Not so much punch as pinch in sensitive areas. Men can be scum."
I giggled. "Hashtag Not All Men!"
He laughed. "Anyway, let me pay for everything." He nodded at my basket, which had a few comfort items. I immediately said he shouldn't, since he was getting me the cane.
He then put my basket on the conveyor belt, looked at me until I noticed that his eyes had gold rings, and said, "Then pay it forward. Help another cripple." The corner of his mouth turned up. "Even if it's just donating to help someone get better access."
I nodded. I was going to cry any minute. He paid for everything, put his things in two totes and put my things in two more totes. He saved me almost forty dollars.
He said, "I would offer you a ride, but my friend's picking me up so we can go back to Philly. It's been a great road trip so far."
I nodded. "It's cool. I'm going to take the bus home anyway." I was feeling giddy. "Well, obviously we had this encounter for a reason. So. It was lovely meeting you, clone of Idris Elba."
He threw back his head and laughed. "I get that a lot. Same to you, clone of Mia Sara. Anyway, I'm Laurence."
"Joanna."
We fist-bumped and he helped adjust my cane for my height. We walked outside together, and he stood at the curb to wait for his friend while I walked across the parking lot. I turned and waved. He waved back and kept looking at me. I realized it was to make sure I was safe.
I got to the sidewalk crosswalk and peered back. I saw him get into a green SUV. I realized I would probably never see him again.
I am definitely going to Pay It Forward.

***

Also! Links! For future reference!
http://www.neurodiversity.com/main.html
http://cerebralpalsy.org/about-cerebral-palsy/associative-conditions/
http://www.disabilityscoop.com/2013/10/03/autism-common-cerebral-palsy/18775/

***

Also!
PMS is vicious. Although with oral contraceptives, it's technically withdrawal bleeding rather than menstruation. Besides, I haven't truly bled in over a year. Being on the highest dose of birth control for over fourteen years will do that to some women.
PMS is vicious. A veliciraptor chewing through my pelvis. There's a photo out there of a plastic female human skeleton, with a toy raptor stuck head-first through the pelvic bone.
And the bloating and bizarre fluctuations on the bathroom scale.
Having slid back to psychiatric anorexia after failing to control neurochemical anorexia, I know damn well I should not stand on that scale especially during this time. I know damn well that numbers don't mean as much as how my clothing fits. But paranoia bred from life-long anxiety over disordered eating patterns is paranoia. And then there was the entire food=growth=death connection when I was little. And then there was being under a hundred pounds until my mid-twenties. And then there was the anorexia voices insisting that I needed to get back to that, being under five feet tall. I was never overweight. I used to weigh something around the high "set point" - but I have no idea where I've constructed this memory of being convinced to lose twenty pounds. Unfortunately, my illness has burrowed deep enough into my subconscious that my thoughts have turned to the classic hallmarks of anorexia: "I absolutely must be below X number or I will never feel right". The unwillingness to stop. The belief that everything is wrong. I know where I am. I know what's happening. I've been able to compartmentalize and separate enough so that I smack myself when those thoughts occur, so that I at least eat an apple or two, or cheese, yogurt, celery, even cheesecake or dark chocolate. My friends are with me.
Sag Harbor will happen next week, with Thanksgiving. Part of me is in a total blind mute panic. That part doesn't want to eat anything. That part wants to Be Good, Be Perfect. It doesn't matter that I'm over thirty, says the panic. It only matters that I am extremely small and I must keep being extremely small.
To bring everything around again: PMS is not helping. PMS is several numbers upward on the scale because of fluid retention, bloating... losing that fight to not overeat. PMS is barely fitting into the purple dyed jeans yesterday and having them slightly loose today. It isn't helping anything.

But I look at that blue and silver dragon scale cane, bought for me by a total stranger with the same disability as me, and I think the best way I can Pay It Forward is to make sure someone I care for stays as mentally healthy as possible...
brightlotusmoon: (Asha)
This is the greatest.
http://yoganonymous.com/watch-ultra-spiritual/

Good news: Apparently, most of this small weight gain is actual muscle. Who knew.
Annoying news: Everything hurts in such a very specific way everywhere that most forms of exercise make it all worse. The only things that seem to make it better are isometrics and mild qi gong and a few basic Pilates-style moves... sooo, physical therapy with a spiritual bent?

Also, I still have a stress reaction to even the idea of "doing yoga for pain". None of my doctors are surprised. Plus, the physical therapist suggested some lovely snarky replies to "Have you tried yoga for your pain?" - my favorite is still "Well, yoga tastes like artificial banana, and I hate artificial banana flavor, so I don't want any yoga, thanks." Second favorite is "Nah, I'm still trying that floating Jedi thing in the swamps. I'd rather take the Dark Side with the cookies."
Seriously. Don't yoga push me. I did try it, it was painful, I found other things.

Now I feel like mimicking that scene where Bart draws a picture of Flanders and chases Homer around with it yelling "Howdily doodily! Howdily doodily? HOWDILY DOODILY?" Luckily, I haven't been pushed in a while, and the last few times, I remained calm and cool, because I am still fucking awesome.

Addendum:
Also, it's really interesting: I am totally fine with basic yoga, with flow yoga, with restorative yoga. But it is the way people talk about it as though it helps everyone heal everything? That is what I gripe so much about. Maybe some poses will help ease cerebral palsy issues, fibromyalgia issues, joint issues. Maybe. For some disabled folks. But if I say something like "No, thank you, I've tried that, it was too painful, it made things worse, and I have found other exercises that help me," I expect people to, if not back off, then at least acknowledge my reasons. The actual fact that many pushers have brushed off my reasons and kept pushing is what makes me want to slap them with their yoga mats. So when I talk about an exercise by calling it a name that is also the name of a yoga pose, please please do not assume I have taken up yoga. It's just that "Warrior Pose" is far simpler than having to describe the whole thing.
Comments:
Anna Sirén: Yoga? Us? Really? ...?
Joanna Capello Paul: LOL, it is to laugh. But by gods, people love to try.
Anna Sirén: Jesus, I can't imagine you with your ankles behind your ears, and that's not an insult.
Joanna Capello Paul: OMG ow. Ow ow ow OW.
Joanna Capello Paul: I'm just glad other CP folks get it. I don't know what's so particularly special about yoga, but it's become so elitist in many ways. And if I say I'm "doing Child's Pose" or something, I feel like I need to add "not actual yoga because that is painful" because just because it's a stretching exercise doesn't mean it's a yoga pose.
Cara Liebowitz: When a teacher who knows how to handle Ceeps is doing it, yoga can be nice. *coughcough* Kara T. Billingham. Yoga at crip camp was great fun, if painful.
Joanna Capello Paul: My mom teaches a certain type of yoga to seniors in Southampton sometimes, and the moves are so simple they're barely even yoga. What bothers me really is this culture of yoga-ier than thou elitism, and gods forbid I perform a "yoga style type pose" that is not yoga.
Cara Liebowitz: I wonder if Kara and your mom know each other. Next time you're in the Hamptons, stop by The Yoga House, LLC and ask for Kara, tell her you know me. One of my favorite things about Kara's yoga was that she encouraged us to laugh if we wanted to.
Joanna Capello Paul: Hmm. I'll ask my mom! Have you spoken with Kara lately?
Joanna Capello Paul: *looking at website* Well, it's good that she teaches Kripalu. My parents' basement tenant, who is a massage therapist, is a certified Kripalu teacher.
Cara Liebowitz: We speak every so often here on Facebook, last I saw her was over the summer. She is wonderful, wonderful, wonderful and so is her husband. Two very influential people in my life.
Joanna Capello Paul: I haven't been through Hampton Bays in a long time, but I do recognize that sign and building. I have a feeling that Kara and my mom have run in similar circles.
Melissa Boyer O'Doyle: I'd rather take the Dark Side with the cookies.
Heather Stover: I do vinyasa flow yoga and restorative yoga. It helps. With some things. It is not some magic cure for everything. If you're not into it people should leave you alone, your yogi wouldn't want you there with any less then a willing mind and heart.
Heather Stover: Gentle yoga classes are the bomb. I hate elitist yoga snobs.
Mad Miriam: You know you might just get people to back down more quickly by simply sating that you have a very satisfying home practice, thank you very much.
Joanna Capello Paul: ...except that when they keep nudging and insisting, I tend to feel backed into a corner, and I start snarling. I'm a very peaceful person. But I am also shy and isolated. I really don't like being pushed.
Mad Miriam: If your agreeing why are they still nudging and insisting?
Joanna Capello Paul: I really wish I knew. People are very odd.
Mad Miriam: I'll say. I'm sorry, I for one do not push cause well I know you have met the practice where you are at and since yoga means union isn't that the fucking point anyhow?
Joanna Capello Paul: Agreed. That's why I am so upset and pissed off when people don't seem to understand the whole damn point. Union is about, y'know, respecting people's choices. The fact that there ARE yoga practitioners who almost bully others into doing their kind of yoga - particularly disabled people - hurts me.
Joanna Capello Paul: For example, in the cerebral palsy support group I am in, there have been stories of non-disabled people pushing CP folks too hard, leading to injuries that were not fully recovered - physical and emotional. And that is just not right at all. And I feel like that is part of the weird elitist attitude that shouldn't even exist with yoga practice.
Mad Miriam: OMG Joanna Capello Paul I could not agree more, as a fairly mild arthritic I get the same shit and I don't get why its so hard for some teachers to understand that just cause I got into a really low lunge last week this week my knees and hips might just be too stiff to go there and that it does not mean I am not dedicated to the practice, it means I am listening to my body, something we should all aspire to do more often.
Joanna Capello Paul: Listening to our bodies! Exactly! I don't think people like that care about listening to the body anymore. You do what YOU must do for YOUR body. And I am so burnt out on teachers who don't listen. It's why I do restorative, flow moves with my mother over the phone.
I mean, I literally cannot be straight. When I try a lunge, or a pose that requires balance, I have to ask someone, usually Adam, if my body lines up. And when he helps get me into a straight aligned line, I start wobbling. It hurts. I am in serious pain. My body, my very bones, were never going to align like that. And so I need modification, compensation, compromise. And the fact that a lot of yoga practitioners have insulted me just for that literally created a stress reaction in my brain. So when I talk about yoga poses, I have to say "modified basic yoga" otherwise I start hyperventilating just from memories.
Mad Miriam: It is a myth that our bodies and bones can align to some artificial standard, we all all have such diffent experiences and phsyologies that make up who we are and it my mind if you are making room for the breath and creating sensation, but not pain you are doing it right. I totally agree through and think it is part of the problem with the comodifying of yoga, I think once upon a time, maybe there was the root of the notion that yogis practiced to access a place beyond pain and body and to reach a space where they could meditate and focus on breath and vein, but with institutions like lululemon and power yoga people see their yoga as about perfecting the body and not reaching past the veneer that is the body. Its fascinating and sick really.
Joanna Capello Paul: I appreciate you saying that, Mad Miriam. It makes me feel better, knowing that there can't be such "perffect alignment". I was always, always told that I'd never reach any ideal pose with cerebral palsy. So I stopped. And I found isometrics and just started doing meditative stretching, which was my version of yoga anyway.
Mad Miriam: Next time someone starts to push hard ask them if they practice Ahimsa, it is the first basic principal of yoga and translates into compassion for all living things, if they say "Of course." then tell them you do as well and intimately understand what is most compassionate for your body. Namaste.
Mad Miriam: I think all the wrong people have been foisting their opinions on you. I took up Kundalini yoga last year and the whole idea of it is that through the practice you are opening up channels on your spine for the kundalini energy to come spouting out of the top of your head, I expressed concern that I had a slight scoliosis in my spine and that according to this notion I was ineligible for kudalini enlightenment, my instructor said "No worries, the energy meanders its way around these things, it's like a stream." Thus I go with that notion.
Joanna Capello Paul: Ahimsa, eh? I shall look into it!
I have fallen in love with kundalini energy. I do what your instructor says, instinctively. I don't necessarily do all the poses and moves but I reach for that energy in my own way. Maybe one day you and I could get together and practice in our own imperfect methods?

*****
Copying stuff from other social media sites can be interesting...
brightlotusmoon: (Asha)
...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!

***
brightlotusmoon: (Asha)
http://www.autistichoya.com/p/ableist-words-and-terms-to-avoid.html

Okay, so naturally I disagree with several of these. I use Idiot, Moron, Crazy, Stupid, Lame, Gimpy, Cripple. In fact!...
Via Facebook:
BTW, FYI: When I am stressed, worried, afraid, or panicked, I turn to satire, wryness, flippant humor, self-deprecation, and dark humor to soothe myself. It's not that bad right now, but if I discuss any health issues with blatant dark flippancy toward myself, it's just a way of being okay with stuff.
I'm sure plenty of folks do this. Sometimes it's all about sanity and security! I am such a lame cripple right now. Hah.
BUT: I won't use ableist words without a warning note that I personally am not offended by a few (specifically idiot, crazy, moron, lame, gimpy, cripple - I apply them only to myself). Since they are known offensive terms, and I know this, I'll make a point to not use them outside of me, myself. However, if anyone has issues with my potential use of those listed words specifically, please let me know.

See, I think lists of ableist words tend to go too far. But everyone has their own hairline triggers and I ain't stepping on those wires. But I won't step on eggshells. I will apply trigger warnings and disclaimers because I know very well. One of my favorite insults comes from Futurama: "Asinine Morons." It feels so good on the tongue. I just like the word Asinine. Maybe Moron could be replaced with Coward, Jerk, Pissant. I don't know. I really love finding words and terms that I could use instead of words that obviously refer to disabled people in an unflattering way. The thing is, with disabled people being among the most marginalized of the marginalized groups, it will take a long time to alter the vocabulary or lessen the ugliness of the words.
I still refuse to use "retard" because it reduces a person to slowed developmental growth above all else. And really, the only time I've heard "retarded/retardation" was with plants. And there should be other words.

On to other things: My migraine, which has been slowly creeping since last night, is being gently soothed by caffeine, B-Complex, Boswellia, Magnesium, Aspirin. The Ayurvedic pills - Bacopa, Ashwagandha, Shilait, Turmeric, Boswellia, Fenugreek - have been helping slowly but surely. And the stuff I picked up while grocery shopping are helping beautifully too. Yay symptom soothing!
brightlotusmoon: (Asha)
Sooo, you know how I've been chatting with my neurologist a ton, and also with my psychologist? Neither woman has spoken to the other. But they both recently gave me the same diagnosis.
(Now, I need to stress that I am perfectly aware of the "Stop relying on so many diagnosis labels, it's just medical stuff, what does it matter, why do you care, why do you think people would care" cliche that has been poked at me by, well, many healthsplainers and people who just want me to stop talking so much about my medical history, future, and present. And yeah, I get that. But guess what, I don't care.)
The neurologist was kind of relaxed about it at first, and after I left her office I didn't really consider it. Not until that one session with the psychologist, when she looked at me with tears in her eyes.
It's just that the neurologist used one term, and the psychologist used a different term.
And I would love words from those who are there. Because fuck it, it does matter.
http://www.psyweb.com/articles/depression/chronic-stress-disorder
brightlotusmoon: (Asha)
Stuff to remember!

Quote on guarana:
""Guarana is one of those herbs that most people do not know much about, but should, because it is superior to plain old caffeine. The reason Guarana is superior to caffeine is for two reasons in my opinion. The first being that Guarana has more than just caffeine; it also contains two other stimulants in Theobromine and Theophylline. The second reason why Guarana is more effective is because it has different natural stimulants that seem to be released more slowly than regular caffeine so your energy levels seem not to spike and lull as much as regular caffeine. To add on to that, I will say that Guarana also contains Choline which is a powerful nootropic, as it increases mental function because it is a precursor to the vitally important brain chemical Acetylcholine. I enjoy Guarana because it really is an effective herbal Adderall replacement supplement.""

Stuff from Facebook:

I am starting to forget what it's like to have physical energy, like basic adrenaline and muscle strength. It comes and goes. I miss dancing and laughing. Maybe I can do it soon.

Okay. Okay.
It's fine; it's just a lost plushie owl. I'll find it eventually
For now, I can not focus on the bigger owl. I have a tiny owl, and I have that gigantic carnival owl. I also have the snow leopard, the massive carnival husky bigger than my cats, the Ponies, and the awesome Spherical Plushie Bunny. But I am still going to find that white and gray owl. It is so fluffy. You guys. It is so fluffy.

How funny. I looked in my bathroom mirror and wondered which foundation makeup I had applied. I realized I hadn't applied any makeup at all. It was a slightly alien feeling...
Those memes going around explaining "Why I Wear Makeup" and "Why I Don't Wear Makeup" are absolutely beautiful just to me. You know. Do not tell me I don't need makeup all the time. You are not me. I am not you. We can't obviously instruct each other's cosmetic preferences without consequence regardless. I personally need base concealer. Maybe you don't. We are both pretty.
It began with a severe anxiety-driven fear that my skin was covered in destructive blemished. It isn't ending. But it has traveled along a road that has begun healing.
Good enough, for now.

Still full of muscle exhaustion beyond muscle exhaustion. Still in muscle pain beyond muscle pain. However, the rest of the vitamin boosted coffee has kicked it, the moisturizers made my skin feel much more awesome, and the plain cake doughnut I just ate was delicious.
Besides, I have several couches and a bed to collapse on.
brightlotusmoon: (Asha)
Some postictal stuff happened. Some preictal stuff happened. I don't recall the ictal stuff. Yesterday and the day before were fascinating blanks. My entire lower back, from muscle to nerve, screams in pain and then cries in pain. That has been the normal thing. So, normal Shrug.

I've been reading books. I've been watching the Simpsons marathon on FXX when I can. Occasionally, I've fallen asleep to it. What a lovely idea.

The extracts of mangosteen and noni have done their best to help with pain and such. I approve.
brightlotusmoon: (Asha)
Really, that's all I wanted to say. The physiatrist prescribed twice a week sessions for an hour and a half. My therapist, Michael, looks like a cousin of actor Jensen Ackles. We are doung slow gentle sets that engage all the muscles in my lower back, pelvis, and thighs.

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


Posted via m.livejournal.com.

brightlotusmoon: (Asha)
Dear Cerebral Palsy: You are making me angry. I don't like me when we're angry. Please to stop being so spastic and ataxic and hemiplegic and such. I will throw baclofen at you and also codeine because you are misbehaving. Stoppit.

Seriously, though, I feel gross. The fibromyalgia and the allergies are hitting me from all sides. My joints feel sad. Everything feels sad. I mean, in my body. My brain feels okay, although heavily fogged and stripped of some memory. Like, I actually can't remember stuff from yesterday. I remember Adam and myself running errands at a dollar/more store and at H-Mart, but I forget what we got. I don't think I had seizures. Just myalgia fog and memory loss. I had run out of some medicines, got more of them, but can't remember much else regarding that. It's similar to autistic inertia, but with fibromyalgia and disruptive cognitive tempo (ADHD) tossed in. The weather is dragging and heavy and I feel so, so heavy.
Sigh. Shrug. Meh.
brightlotusmoon: (Asha)
Seriously, though. This toothbrush containing edible gold, bought at H-Mart, made in Korea, seems to really do something. I've taken colloidal gold before. It was good to my teeth. The toothbrush, with nothing but herbal powder, actually seems to make my teeth feel clean, smooth, and hell, even detoxified. I don't even know if that can be a thing. I used it dry a few times and got the same sensation. DeoLife toothbrushes. Gold, bamboo charcoal, silver. I get the silver and the charcoal, those are famous for being antibacterial and such. The one with the gold calls itself detoxifying, removing plaque build-up easily. I am skeptical, but there seems to be some interesting evidence. My teeth are certainly whiter.

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

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

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

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

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

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

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

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

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

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

So. Other things...

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

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

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

My mom keeps telling me that I've fixated too much on being autistic, on advocating, on activism. She suggested that I just BE. I'll take it.
brightlotusmoon: (Asha)
Okay, so. This new show on ABC, "Black Box", which has really polarized critics. Some people hate it even though it's only had one episode. The creators insist that it may change how we see mental illness and neurology.
The main character, Dr Catherine Black, is a brilliant, innovative neuroscientist who tries to hide her severe manic bipolar disorder. Except she loves the way she feels during manic episodes, so she often discards her medication, runs out and becomes hypersexual, has hallucinations, becomes a different person. She realizes this and understands the extreme consequences, but finds it hard to stop. Her psychologist, who is wonderful, is worried. Her fiance, who she kept in the dark for a year, winds up liking her hypersexualized, aggressive manic self. Her brother and his wife are raising her daughter, born when Cate was a teenager, who doesn't know that Aunt Cate is actually Mom and who is displaying symptoms of bipolar.
There will be melodrama. There will be intensity. There will be exaggerations. Patients who suffer from all sorts of conditions that Cate will be able to work with thanks to her personal holistic insight into the complex brain. Cate will be shown as an exaggeration of a bipolar patient, and it may lead to audiences arguing over the benefits and dangers of drugs, treatments, holistic treatment, psychotherapy. We shall see. So far, I liked the pilot episode. But it might turn into a "Grey's Anatomy" or even "House" style show, with drama on top of drama, further polarizing audiences. We shall see.
http://blogs.indiewire.com/criticwire/black-box-abc-kelly-reilly-reviews
http://www.avclub.com/review/black-box-its-protagonist-flawed-endearing-203589
But so far, Catherine Black may as well be me in a separate reality, if I had gone for neuroscience in college.
http://www.bostonglobe.com/arts/television/2014/04/23/abc-black-box-bipolar-doc-with-cure-for-what-ails-everyone-else/edYtT036PpTSUZ8ZOrokKM/story.html


Okay, so, there's me. I've been having horrible headaches, neck pain, jaw pain. Probably highly interconnected. I blame the weather for the most part. Every morning finds me ninety years old, performing bed yoga in kundalini form for cripples. Thankfully, the combination of my pharmaceutical and supplemental drugs work really well. I have taken advice and started ignoring naysayers who insist I do This or That and stop doing That or This - my health is my own. To quote The Prisoner: My life is my own. I will not be pushed. Yes, yes, I appreciate all the suggestions for this medicine, that yoga practice, this therapy, that device. I am deciding how to proceed with my doctors.
All the pain and stiffness and aching and stabbing fade into the background when I work, ie writing, which is the best thing. The supplements for ADHD work well enough so I can concentrate, but I need to eat more often, because I take after my father, like when he's outside carving stone forgetting to eat for hours. Small meals several times a day works best. Nut butter-fruit preserves sandwiches on whole grain bread do wonderful things. Grilled cheese sandwiches, with avocado if I have it. Yes. Oh! I have a slice of cheesecake with which to treat myself!
A walk around the neighborhood, quad cane in hand, was helpful enough, after push-ups, weight-lifting, leg stretching. I do what I can.

Also, on an LJ community for disabled people, I was asked to find links for cerebral palsy and comorbid conditions, and I want to remember them, so this:

"Well, I started out Googling cerebral palsy + comorbidity. I joined a private CP group on Facebook and discovered some extraordinary - and disturbing - facts about aging with CP. I'd be happy to try and answer any questions. Many people have no idea. I am spastic-ataxic hemiplegic, left side, born 12 weeks premature, developed periventricular leukomalacia aka white matter death, and at age 35 have actively gotten worse. CP itself is a static condition that never changes, but the syndromes associated with it do progress. In fact, many people with CP don't believe that it gets worse.

http://cerebralpalsy.org/about-cerebral-palsy/conditions/
https://www.clinicalkey.com/topics/pediatrics/cerebral-palsy.html
http://questioning-answers.blogspot.com/2012/10/cerebral-palsy-and-autism.html
http://www.ncbi.nlm.nih.gov/pubmed/20654035

These are just some of the articles. I can give personal insight as well. It's very fascinating. "

Aii.

Apr. 24th, 2014 01:39 am
brightlotusmoon: (Asha)
Nnngghh. No. Nope.
*breath*
PAALSYY. *fist-shake*
*also literally*
*also thumb in palm, finger flexion wrist flexion, shoulder internal rotation contracture forearm pronation, elbow flexion, clonus... plus spastic hypertonia anyway and also fibromyalgia flare, also stabbed hips. Because fuck everything, that's why*
...*mutter*

A hot bath was mentioned. I requested the amazing secret to getting in and out of a bathtub when it hurts bad enough to scream. It seems there is no secret, just more pain and doing things anyway, because decisions. Magnesium salts, then. Magnesium oil massage, then. Yes.
AUGH. IT HURTS. CRIPPLE SMASH.
Oh, hey, the narcotics and muscle relaxants and anxiolytics are starting to do things. Heeeyy.
Still hurts, but heeyy. Walking. Look! Stairs seem possible again!
Still hurts, though. Just meh now.

Look, I keep telling them, mild counts. Children who have it grow up. Into adults who have it. Adults who are still disabled. Adults who are disintegrating as they age. And mild still counts. Just because I am not using a wheelchair doesn't m-
Oh, fuck this. I'm exhausted. I already went through it with them about the autism and the partial seizures and the OCD and the ADHD-Inattentive and the dyscalculia and the lordosis. And the pharmaceutical drugs alongside the holistic drugs. And I like talking to educate. But they don't seem to be listening well. They make me tired.
http://cerebralpalsy.org/about-cerebral-palsy/symptoms/eight-clinical-signs-of-cerebral-palsy/
*

http://unstrangemind.wordpress.com/2014/04/20/labels-are-for-soup-cans/
This is beautiful. Although, I've heard the term "identity" used in place of "label" and I think that's a cool alternative. But I, personally, will use the "label" term for myself, only. If someone else is fine with it, I'll apply it with them. If someone is anti-label, I will use whatever they use.

I've seen similar issues in gender: Some genderqueer and genderfluid people who do prefer the terms "male-bodied" and "female-bodied" often get scolded for not using "assigned male/female at birth" - but if that is the term you wish to apply to yourself, nobody should scold you for it or insist you change. If a person doesn't want to use the term "label" for themself, they shouldn't have to. But nobody should scold or insist that others stop using labels as identification.

It's like that whole "You shouldn't define yourself by your disability!" I would ask, "Why not? It is a huge part of who and what I am." Then again, I believe this may be part of a divide between those who were born disabled or acquired it so early in life that it is all they know, and those who acquired it after a life of ability/being able-bodied. For example, I take my being disabled seriously, and I have always seen it as a strong part of myself. However, because I was always told to not define myself with it, I learned to push that part down. Now I feel free to express it, now that I've been surrounded by new friends and acquaintances who feel the way I feel, which is wonderful and refreshing.
brightlotusmoon: (Magic Goddesses)
So, I had what I considered a palsy victory and agony simultaneously.

Depressive episode gripping me hard enough to draw blood, I walked out - no cane, because medicine and meditative stretchy exercise like whoa - and took the Metro to Twinbrook, walked the ten minutes to Congressional Plaza, shopped, stopped to eat sushi, and carried two bags back to the Metro, right side burning and feeling ripped open while palsy left side felt ghost-like and nearly numb. Got to Shady Grove again, took the bus and stopped at the Redmill Center right near my house community, went to the CVS and bought drug refills, limped and shook and spasmed and gasped as the bus dropped me off across from my townhouse community, walked with three bags that felt like dead weights, stopped to get the mail, went home, went upstairs, collapsed, and very weakly, feebly flailed and flapped and cried out "Yay, I did it, go me!"

I got myself belated birthday gifts, especially because the Rockville Ulta now carries
It Cosmetics, which is my top favorite makeup brand in the world, which I just learned today so it was like a cliche of angels singing. I'd been waiting for my Ulta to acquire It Cosmetics since last year, when the Silver Spring Ulta announced they had the brand and that Rockville would get it this spring. YES. I was also flush with coupons and points so I splurged: I got the new liquid peptide foundation and the new thin-brush peptide mascara; and also Ecotools brand konjac facial cleansing sponge made of konjac fibers, because konjac is one of the most awesome internal and external cleansing fibers in the world.

I was in horrid pain, honestly awful bad bad pain, pain that was like trauma pain... and I was happy. Because PAIN pushed me on. And VICTORY. It was nearly joy. And joy is something above emotion, after all.

I knew that my cane might have made my hands more full. But the fact that I was capable of doing all this without a cane... it was just... well, you know. Hemiplegic spastic ataxic cerebral palsy, spastic hypertonia, fibromyalgia, osteoarthritis, sciatica, lordosis, migraine pain, major depressive episode, autistic symptoms making everything loud and bright and I could barely look in people's eyes despite cheerful conversations. I did STUFF. I did stuff that made me feel good. I will be in pain for days. But I did it! I think the agony will be worth it, the codeine and the tramadol and the baclofen and the clonazepam and the capsule supplemets of devil's claw and MSM and cayenne and mangosteen and noni vinpocetine and oh my gods I can hardly walk and I am shaking all over and my muscles feel torn up and I want to break down in tears.
But I am proud of myself?
*wipes away tears*

Damn, I really hurt...

...and I forgot to buy milk.
It's okay. I have enough coconut cream, coconut milk, and sweetened condensed milk to work with my coffee until I can get to Giant. Plus a hand mixer blender device to whip it good. At Giant I can grab a lightweight jug of kitty litter and a half-gallon of whole milk, and canned cat food. I can bring a backpack plus a tote to see what will fit how, so I can take the cane.
I'm twitching so much. I wonder if this entire day was one big seizure trigger. Fuck.

Now, today, the day after, I am slowly preparing for my first meet and greet appointment with the new psychologist. My last one got too expensive after I switched to Medicare, and this new woman will work on a sliding scale, with my mother willing to help.
brightlotusmoon: (Asha)
Um. So.
Last night I had a small seizure - awake but barely conscious. And the baby migraine kept pulsating. I forced myself to sleep. I woke up at noon with the migraine even worse. And the thunder rolled.

The seizure itself was pitch black. It had me moving through a completely moon-less woods, holding the hands of two people - Alicia and Ananta - and stumbling over things, which transferred agony into my skull. I was shaking. They kept saying, Just a little more, just ahead, it's a rose light, you'll recognize it...
And there it was like a rosy mist with light inside. At the last minute, Ananta picked me up and carried me directly into the mist. That is all I remember.

I wound up staying in bed for an hour, because Calliope kept vocalizing, nuzzling and bunting me, and settling in to nurse on my shirt. I know she loves me deeply, but I must ask the cat behaviorists here what it means to be truly, actually loved by your cat, because Calliope will not go to bed until I go to bed, Calliope will follow me around the house, Calliope will check on me just to make sure I exist.

After I fell out of bed and took my medications (baclofen, tramadol, codeine, coffee, omega-3, MSM, L-Tyrosine, probiotics, inositol, shilajit, ashwagandha, noni, mangosteen, devil's claw, magnesium oil massaged into the severe stiff burning screaming lower back).

I am not fooled. I may be upright, typing. But I am having moments in which I need to breathe, collapse in the chair and massage my head. This will be a very interesting afternoon. Luckily, I have DVRed Archer, Bitten, Being Human, Lost Girl, etc. Just in case.
Is it sad that I want Ray and Lana to be my nursemaids?
brightlotusmoon: (Asha)
Quoting an article about cerebral palsy and sex, particularly kinky sex:

"Old Pain I’m used to: the tightness in my hips when I don’t stretch in the morning, the pressure where my legs meet my back when I walk too far. It’s not that I don’t feel it; it’s just been there for so long that I know not to get nervous about it anymore. New Pain is where it gets scary because it stops having a name. I can’t immediately catalog it or diagnose it as benign. At best, disability allows you to create a tenuous peace with your body, and anytime it decides to violate that mutual agreement can be terrifying. You take the time to figure it out — what it likes and dislikes, where it functions best — and stick to that routine, until New Pain reminds you that you’re never quite going to have this figured out."

I'm a wimp with any kind of pain. But yes, Old Pain, I'm very used to Old Pain. I'm not good with pain. But, well, Old Pain is a whiny annoying thing that you deal with every day because you have to.

My favorite way to engage in personal physical stuff - not just sex - while having cerebral palsy: Communicating. A lot. Trusting. Being aware. Sharing the understanding that I can do this but can't do that, I can do this but it would be cumbersome and difficult, that I can do that but it would require compensation, modification, and help.
That's just life, though, really. But with disabilities, it becomes conscious and essential every single time.

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