brightlotusmoon: (Asha)

I have been snacking on whole fresh mozzarella cheese, salami slices, and roasted almonds, along with apple slice smeared with cashew butter. Good stuff. When Adam comes home from work, we'll eat the eggplant parmigiano that has been soaking for two days.

In the medical science community, there is a slow push to make chronic fatigue syndrome an actual disease as well as fibromyalgia. This may at least help them take us more seriously.
All I know is that Cymbalta is doing lovely things, surprisingly. After adding Rhodiola Rosea and Garcinia Cambogia, which gently boost dopamine and serotonin, I feel better. Still in a depression episode, still having anxiety blackouts and transient global amnesiac episodes. Buuut it's better. It doesn't seem any bettet since it all began in 2011. But I can feel things happening. It's all qualia anyway. All subjective.  I can never tell anyone to be me anyway.

brightlotusmoon: (Asha)
Good news: I have personal anecdotal evidence that at least six grams of Inositol powder per day have seriously curbed symptoms of multiple anxiety disorders, OCD, and ADHD-Inattentive Type. It will take a few months to really see major effects, but combined with the new Cymbalta, the therapeutic inositol is a good thing for me. For ME. Mom sent me the inositol powder she had because she said it was too sweet. It's been replacing sugar in my coffee for a few weeks now. Besides, you need more inositol if you drink coffee.
http://www.integrativepsychmd.com/articles1/inositol

I'm almost recovered from this respiratory virus thing. Using Mucinex D has helped, although I'll be happy to no longer need it. I miss free deep independent breathing. Not even these qigong exercises work enough. But that is what modern medicine is for. And holistic medicine for balancing support. *drinks more Fenugreek honey tea with mangosteen powder*

The fibromyalgia flare that has plagued me for a full month is still in full strength, but I feel like I am too used to it. I wonder if that's a bad thing.

I see my general physician tomorrow anyway: We were planning on discussing my new positive relationship with Cymbalta and its amelioration of my worst episodes of OCD, ADHD, panic disorder, and nightmares. But mentioning something to kill a virus is a good idea as well. And the next day is my monthly pain specialist appointment. I plan on talking about the canned oxygen treatments I've been taking.
brightlotusmoon: (Asha)

Hello, walking pneumonia,  it's been a long time.
Grump. Adam has shaken it off like a wet dog thanks to his supreme immune system. Me? BAHAHAHA NO. Grump. The virus teamed up with the fibromyalgia, spasticity, ataxia, epilepsy, and autistic comorbids. Adam couldn't get how I was too weak to lift a slice of beloved New York pizza to mouth unless I drank whole milk just for calories. It was hunger, viral illness, disabilities, chronic illnesses, altogether now. I'm eating slowly as much as possible now. My go to safe food during hunger fatigues is always dairy, since it saved my life in college, and it's been long debunked that dairy products make the body produce  more mucus. Second safety food is nut butter like cashew and almond, or peanut butter. Yesterday's sandwich of  smooth cashew butter with lingonberry preserves on multi grain bread was divine.

I'm super cold. My temperature is so low, I'm a brown dwarf. Husband's joke, he's the astronomy nerd. While I agree that I may not have enough mass to trigger internal combustion yet, the neuro-psychiatric chemicals and neurons running around the inferior parietal lobe are making jokes about how "less mass is the whole point lolz" and excuse me, I need kick my brain in the insula now.

Current encouraging meal: yellow rice mixed with crema, mushroom, and crumbled bacon. Really really encouraging flavor.

(Seriously, my basal temperature hovers around 98.3 normaly. Right now it's at 97.2... Husband is always amused that I rarely create my chi flow after meals. He's a furnace, instantly beginning metabolic burn so intense that he projects heat. Me? My core is cold. My chi might as well be ice. Since I do work a little with chakras and basic reiki, I know how often my solar plexus chakra is partially blocked. Weird thing is that the few times I did healing touch on friends, they mentioned that i projected cooling energy, like a burn being soothed or a soft autumn breeze.

I will see if I can start my metabolism furnace more quickly. Also, velvet cardigan!

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)
http://www.bethesdahbot.com/
On Monday, I plan on calling my pain specialist or general physician and asking for a referral to The Bethesda Hyperbaric Oxygen Therapy Center. It is literally next door to where my physiatrist and physical therapist offices are. And now that hyperbaric oxygen therapy has been approved for things like cerebral palsy and muscle pain, I'm hoping that it might help ease up some chronic pain. A while back, Adam had bought a small canister of oxygen, which made some of my muscle pain disappear for a couple of hours.
So, who knows.
brightlotusmoon: (Asha)
I did all my specialized personalized modified physical therapy exercises: The modified individualized Cripple Yoga with gi gong and isometrics, the stretching sets and cardiovascular sets, the strength training sets.

Now my body is ready to fall apart, lose consciousness, and catch fire. I hope I don't have those awful dreams in which my higher mind tricks me into thinking I am "healed" or some shit.

To head off any comments: When a person has various disabilities that are neuromuscular, muscuoskeletal, neurodevelopmental, and related to chronic pain of all kinds, healing exercise and healing workouts do not solve anything. There is no magic energy flow strong enough to tweak symptoms, syndromes, or conditions for the better. All it can do is slowly, carefully, mildly soothe and smooth out the cracks little by little. I'm going to fall over after I work out. It's going to take time and more, new pain. It's a cycle.

I already take [supplements that help with post-workout fatigue, with pain, with achy muscles]. I will list them if there is interest. No need to suggest anything. Eventually, I will feel mildly better, even though spasticity and hypertonia will just force everything back to normal, and then I'll need to play the game of "Is it palsy spasticity reset or epileptic seizure aura?"

This is an announcement: If you see someone with a disability like cerebral palsy and they are preparing for any kind of workout of exercise, don't make assumptions that they will automatically immediately need help from you. They know what they're doing, how to do it, why to do it. And they will ask for help if and when they need help.
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)
Sleep last night was interesting and bizarre. A lot of acquaintances - and a few friends - have claimed that insomnia must involve only being unable to fall asleep or only being unable to stay asleep. I've got a form where I can do both perfectly well, but at the price of chronic pain physically, which also transcends my dreams which really should not be allowed to happen, and neurologically, which is not only a thing but which keeps parts of me both awake and asleep. Therefore, it takes too long to reach Stage 3 NREM, and Stage 4 NREM either is cut off or doesn't happen. REM itself usually happens at a time much later in sleep. Essentially, unless I set extreme alarm clocks, I will sleep for twelve hours easily and REM will happen in those last three hours.

This time, I had slept on and off throughout the afternoon in thirty minute bursts, which probably helped me get a more normal ten hours while still being woken by pain. But this time, my dreams were deep and amazing. Since I had finally just finished reading "The Winter Long" by Seanan McGuire - now my favorite Seanan book - the concept of Faerie in a Toby Daye meets Lost Girl style story exploded, and there was even a blog announcement by Seanan that the October Daye series would become a television series. For fuck's sake, there was a character embodying both Tybalt and Dyson. And then somehow I became the protagonist, as often happens, and my husband and I struggled to release a literally faceless mermaid into the ocean before she destroyed the land. There were tentacles and it was gross. But wow, lots of powers. Many, many powers. I always get powers in dreams, usually psionic, some form of psychokinesis, normally elemental. I still recall the dreams I had as a teenager where I was pyrokinetic enough to set a tree on fire just by waving my hand at it from the window of a room.

I am especially determined to wake up after nine or ten hours to dial back whatever toll the oversleeping is taking. Then, slowly, eight hours, just to see if I can handle that "average" 7 to 8 thing that normal people talk about.
Adam somehow gets by on less than 7 per night, sometimes 4 when he's out of state working 18-hour days as an IT/AV trade show technician and manager (he loves talking about his job, and it is fascinating work, since he gets to gain secret access to some of the most powerful places in the country and listen to some extraordinary science and medical research breakthroughs during conventions; even just setting up hotel rooms full of projectors, printers, computers, and video screens means being the on site technician when powerful things happen behind closed doors. There is also fixing stupid mistakes, frozen computers, and hours and hours of human error, but more hours means more pay, and he can carry entire printers up flights of stairs).

Also, I think making myself wake up earlier than what fibromyalgia wants will keep other things stable, aside from the obvious. Since going on Zanaflex, most of my systems affected by fibromyalgia have mildly stabilized, which is amusing, since Zanaflex is just a muscle relaxer. People in various support groups kept trying to insist that it shouldn't be happening and that Zanaflex is bad for me. They are so cute when they're trying to be the arbiters of other people's realities, especially regarding brain chemistry!

I'll see my awesome husband tomorrow night, or Thursday, when he returns from another work trip up and down the Northeast.

http://science.howstuffworks.com/life/inside-the-mind/human-brain/dream6.htm
I really must try dream incubation. With everything. Dream All The Things. I've used two phone apps so far to record my sleep, and one of them quit. No, really. The other one just became boring.
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)


Oh, Okay. That was very, very quick. Oh, that was less than a minute. So much energy, so much chemical screaming. Oh, Oh damn. My head is pounding. My fingers can't stop flying over this keyboard. I should go to bed. Oh.
Complex partial seizures are fascinating. Complex partial seizures that secondary generalize into Tonic Clonic seizures are even more fascinating and are rather grotesque. No wonder people were terrified in the past.
I remember grasping the leather chair arms to stop my body from catapulting away. I remember being aware of my mind, but not my body, as I watched my body from a window in my mind. I flailed and spasmed and strained and convulsed gently against the chair, and I fought gravity like a woman possessed. I was completely silent. My hair was flying all over my face. My body had no choice. Something had to release. Like a taut wire snapping. My wrists had strained from working to help my fingers stay gripped on the chair arms.
Things are painful now. Too tense. Tiny spasms now.
Oh, epilepsy. I do not appreciate you at all. Nope.



Also, I am technically okay. Postictal state has left me drained, exhausted, weak, tired, foggy, floating somewhere between hungry and not hungry.
I'm glad I wrote it down. The seizure, I mean. Sometimes I remember better.

Stretching, stretching. Massages. I don't remember what else.
Well, er. At least the ligaments in my knees feel less tight?
Also, seizure fogginess blended with fibromyalgia fogginess makes Joanna something something.

Also, according to my blog records, this was the first seizure in three months, so, hey, that's good.

http://m.livejournal.com/read/user/brightlotusmoon/tag/being%20alice

Yeah, well.

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)
But anyway.
Cerebral Palsy Person Problems!
Everything hurts, blah blah. The left side has loss of sensation, loss of proprioception, extreme forearm pronation with shoulder internal rotation contracture and elbow flexion with wrist and finger flexion and thumb in palm and severe muscle stiffness with inability to completely flex fingers, plus supination of foot, curling and clenching of toes, hip stiffness. The right side has extreme sensation, including stiffness of shoulder and leg as well as severe pain sensations of burning, clawing, electric, throbbing. Mild seems to have climbed a ladder to Moderate, which can happen when a cerebral palsy patient ages past thirty years.

And so, the usual drill. Shake it off, deal with it, slap a bandaid on it, walk it off, quit whining, stop that negative thinking, here's a giant positivity pill, good news it's a suppository, snort this rainbow powder, do these six magic yoga poses every morning to heal all your things, eat this magic plant, swallow this magic pill, do this exercise routine, eat these rainbow colored foods, drink this happy potion smoothie, chant this happiness mantra until your neurons and glia cells become rainbow-colored. And the stuff that people without cerebral palsy recommend because they have had so many happy potion smoothies they are certain all negativity is evil.

But anyway.
Healthful balance of holistics and pharmaceuticals and personal choices!
Also, research into successful treatments combining holistic science and pharmaceutical science. Because SCIENCE.

But anyway.
http://www.orthobullets.com/pediatrics/4129/cerebral-palsy--upper-extremity-disorders


Also.



Delirium. Because So Many Things And Fish.

Also.



Death. Because Too Many Things. And Pain.

And.





Rachel Grey. Because phoenix rising. Because renewal always. Because Jean Grey is still dead, yet not finished.
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: (Snow White Ruby Blood Dragon Witch Light)
My modified Disablility Compensated Qi Gong exercises always help, mentally and spiritually and psychologically and physiologically. Like yoga, except Fake Yoga Cripple Style that is not actually yoga. (FYCS. FIX. Ha ha ha...) (Or hey, Fake Yoga Cripple Style Modified Exercise. FYCSME = FIX ME. Ha ha. Wow. Dude.)

But it isn't helping today. I'm too Hollow, which is my term for deep major depression. I'm too Postictal, after that unexpectedly awful seizure yesterday and its aftershock which were tiny seizures for hours. Emotional responses are foreign and results of emotion are mere symptoms, like crying and laughing. I will meditate again, do more qigong work, and breathe and much as possible.
FYI. I am having an episode of pure major Depression plus major Anxiety. This is accompanied by mild memory loss of the past two days. Everything is foggy. I know I should be upset about something, but I cannot feel upset. What is upset, anyway? I think I hurt myself emotionally yesterday. I wish I remembered what it was. I believe it started out with false happiness. Remember that weird assumption of some sort of hypomania? I think I was outside of my rational mind.

Back to special exercises.
People keep suggesting and recommending breathing exercises. I know all of that. I know people just want to share their personal remedies. I love it. Please don't think I am rejecting you. I love hearing your stories. Even the stories about yoga. I wish I could explain why just seeing or hearing the word yoga evokes a sad, upset reaction. It isn't that I am unable to do yoga. It is just that yoga extremists do not listen nor care about my need for compensation. My body was born crooked. I cannot form a proper straight line even if I held on to something. No amount of cajoling, insisting, or pushing different forms will change that. Please don't do that. Please just accept that I have to perform qi gong differently, and that qi gong included poses that are similar to yoga, and that yoga is not the greatest panacea of healing holistic practices. This is part of why I don't want to visit California, which makes absolutely no sense and makes me look prejudiced.

So. Please, please do talk about how much yoga is healing you, because that is beautiful and I am genuinely, honestly joyfully happy. But if you wish to suggest a yoga pose that can be modified for someone with a shaky, spastic, crippled body, please suggest an alternate form. That is all I ask. There is no such thing as a real panacea, even in the botanical world, even in the plant and herb world, and certainly not in the exercise world. It is entirely possible that I will find a set of yoga exercises that will really, truly help me, and I will join the ranks of yoga enthusiasts. Anything is possible. Nothing is off limits. Except evangelism. If I wanted something pushed down my throat, I will drink water mixed with special fruit and plant powders, like sea buckthorn and moringa.
This is coming from my years as a holistic enthusiast and pusher. I was bad. I was essentially an asshole. And then I learned that it was just wrong. I never want to do that again. Just because something works perfectly for me does not mean it will work at all for someone else.

Any form of good physical-spiritual combination exercise, be it yoga, qigong, taichi, strength training, cardio, dead lift weight, isometrics, plyometrics, dance, hardcore dance, etc, is wonderful and beautiful and strengthening, and will help everyone in some personal powerful way. That is the point of exercise.
I love you all. If you really want to help me, don't push me. Just guide me.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch)


I had a seizure. I didn't mean to. It lasted three minutes. Complex partial. I'm so sorry. I suck at everything. I can't think. Word fail. Word flail. I'm sorry. I have to something something rest and medicine. I'm sorry about the seizure. I remember Alicia's kiss. I remember her peace. I remember Koan's purring, I remember Serena's embrace. I remember whiteness and vortex and confusion. I'm so sorry, brain. Something something take your Klonopin and Passionflower and rest easy.
Maybe winter. Maybe I don't know. Things hurt. I'm just cold. Everything is my fault.

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