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)
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...

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: (Snow White Blood Red Dragon Witch)
Also, my knees are still howling.
Actual conversation:
"Oh fuck, my knees hurt," I sobbed.
"Well, yeah, it's gonna rain tomorrow," Adam said. "It's your arthritis."
No!" I stomped my foot. "I don't have arthritis. I can't."
"Yeah, you do," Adam said. "Just admit it. Go get the test and get it over with."
"I don't wanna! I don't wanna add it to my list! There is already 19 separate disorders on that list" I whined.
"Honey," Adam said, "It's not a checklist."
"It is to me," I said flatly. "To me and all my doctors. It's a piece of paper in my wallet."
"Fair enough," Adam said. "But you know I've had arthritic fingers since I was fourteen."
"I know," I said. "But I don't have arthritic knees!"
Adam gave me an exasperated smile.
"If I keep saying it, maybe it will go away?" I peeped.
"Joanna..."
"NO. I don't have arthritis. La la la la..."
"I love you..."
"My knees fucking hurt."
"Go take your Tylenol Codeine, sweetheart."
"Nnggghhh..."
I still can't face that test. I don't know why. And my knees won't stop hurting and that won't change anything.

F.I.N.E.

Dec. 20th, 2012 12:23 am
brightlotusmoon: (Fae Dragon Alien)
Hey, every body system and entire central nervous system? Can you just... not, for a while? Can you just behave and be okay for a couple of weeks? Please? I don't like to beg, but... I need this, okay? It's important. I need you to stop feeling horrible. Can you try? Just try. Please. Please just try. I will do what I can to help, I will do everything I possibly can. But I need this from you. Just... be better. Dear brain-body and body-brain, just try to be better.

See, I am having a horrible migraine, a sciatica flare, a fibromyalgia flare, an anxiety attack, hypertonia and hemiparesis, lameness, neck stiffness, hip pain, jaw pain, and burning in my finger joints. But whatever. Whatever. There is a quote that I am humming like a mantra: "I know it has been tough, but I am still cheering for you, always." This right here is for everyone who knows and feels and deals and fights. I love you. ♥
brightlotusmoon: (Default)
Well, what do you know. The pain specialist nurse informed me that my stabby electric knee pain is totally a symptom of fibromyalgia. And it took me saying "Wait, really? Seriously? Are you sure?" before she started laughing. Also, my stabby electric wrist pains are a symptom of ulnar entrapment, and the doctors are going to give me a nerve test and then suggest specific exercises and braces for my elbow. Also, the nurse wants me to go to a physical therapy place that focuses on fibromyalgia. That thrills me. It's like, "YES! People really get it!"

So now I can add the thing that has annoyed me forever: When someone honks and cat-calls at me while they are barreling down the road especially in the opposite direction, what the fuck are they trying to do? I'm not going to respond. They'
re not going to slow down or stop (please gods no). What. Is. The. Fucking. Point? WHY?
It's funny. I HAVE been asked out by men and women in vehicles parked or slowed while I was walking, and they were always pleasant when I said I was married. Literally, "Hey! Do you have a boyfriend or girlfriend? or Are you married? Yes? Aw, I got here too late. Well, you have a good day!" And they would smile kindly and move on. I mean, yes, it is still weird, but it's not harassment. If I'd said I was unattached, they would have asked me out, and we might have chatted for a bit. But they were at least polite. People who yell out wildly are so fucking creepy it gives me chills.
http://brutereason.net/2012/10/14/on-men-who-think-street-harassment-would-be-awesome/

The thing that really really made my day like forever: A pain specialist nurse saying that fibromyalgia really can produce crazy evil symptoms just by being fibromyalgia, and that nurse recommending a very specific fibromyalgia physical therapist. I mean, truly, that made me so fucking happy I could cry. If only every fibromyalgia patient could have it like this.
Spears raised.

Sally Hansen Nailgrowth Miracle Nail Polish in Forbidden Fudge.
You guys, my nails look like gold infused dark chocolate. I don't know if this will increase or decrease my chocolate cravings. Probably just make me smile while eating chocolate.
http://3.bp.blogspot.com/_fX--nOoiv6w/TRDk1MZtDnI/AAAAAAAABqc/4q5SfcGPK8o/s1600/Picture+023.jpg
http://4.bp.blogspot.com/_fX--nOoiv6w/TRDk2sGx_fI/AAAAAAAABqk/gc0SxessJ7s/s1600/Picture+026.jpg
Also, the Nailgrowth Miracle Polish in Divine Wine is still my favorite, but Forbidden Fudge is close. Divine Wine is bloody wine red with gold shimmer like my lipsticks, Forbidden Fudge is dark chocolate brown with gold shimmer like my hair color. Awesome.

So, I've discovered that I prefer wood bristle hairbrushes and boar bristle mixed with plastic or wood bristles, and metal bristle brushes. They all work so much better than regular plastic brushes. Ionic, cermaic, and tourmaline infusions are also awesome. The brand Goody has a couple of gorgeous plastic boar mix bristle ionic and ceramic brushes that are fairly cheap. When I can, I go to Ulta or Whole Foods and go for Olivia Garden brushes and Bass Brushes. And a dear friend mailed me some small Widu wood brushes that are stupidly expensive but seriously amazing.

Dear "Endlessly" by Kiersten White: I know I've been promising to read you since the end of July when you were released, but I got so distracted by other books; I am so sorry. People kept shoving books at me, and I kept finding new shiny books, and and... I know those are bad excuses, but I promise that this time I will read you, because I love you, and I have loved you since "Paranormalcy" and because I have so many other books to read but I swore I would finish you first.
Dear Self and Friends: No more book recommendations, no more new to me books, no more shiny books to adore until I am finished with the one book I promised to finish three months ago.
I'm glad that's out in the open now.

Seriously, though, honestly, I am so fucking thrilled about my discussion with Nurse Mary. She is so very knowledgable and helpful about fibromyalgia, cerebral palsy, and nerve pains. She smiles all the time. She really really wants to help me. She hugs me. She wants to see me every month, and also because she likes me. I like you too, Nurse Mary.
brightlotusmoon: (Default)
Okay, raise your hand if your wrists and or knees have had that stupid twisty stabby feeling when you bend or flex those specific joints.
You know, like when you walk down a flight of stairs and suddenly it's like someone stabs you in the knee with a piece of glass covered in electricity? And when you go to twist off a bottle cap and it's like someone stabs you through the wrist with a piece of g
lass covered in electricity? And then you start sobbing and screaming stuff like "Holy shit pain pain pain I need my pain drugs right the fuck now" or something similar?
Also, now both my wrists are extremely stiff and my right knee is burning. Anybody have anything like that?

Also, it was funny, because the other day, I was following Adam downstairs and my right knee went bugfuck stabby with burning and I shrieked "Oh my fucking gods ow ow ow" and Adam yelled "What happened?" and I yelled "Twisted my knee or whatever the fuck that is, you know what I mean! Drugs now drugs now holy shit drugs!" and he yelled "Yes, drugs, take your drugs now! I'll wait!" And so after the Ultram and the Soma, I hobbled downstairs and we made dinner together.
brightlotusmoon: (Default)
I think my "give a fuck" just broke. It's bad enough that I'm in a major depressive episode and already filling up with self-loathing about everything I do and am. It's worse when I forget myself and defend my medication choices to a douchebag who is yelling at me with "All Big Pharma Is Always Evil Forever. You need to stop taking all your poison drugs and just eat these specific plants and herbal formulas, since they will cure your pain and your seizures and your depression and they will even heal your brain damage so you won't have cerebral palsy anymore."
I admit, I flew off the handle just a bit. You know, "Listen, moron, I did the purely holistic thing for twenty-something years, and then I was prescribed a seizure drug and a painkiller drug and a muscle relaxant which completely changed my life in many ways, because I had never known what it was like to have loose, relaxed muscles that didn't clench, spasm, feel paralyzed, or feel like burning. I mean, holy shit, people actually live like this normally? Is this normal? I should have done this sooner! Why hadn't I done this sooner?" And how I looked back on my other life and realized how stupid I was: because even if Big Pharma Is Truly Evil, sometimes they get it right. Sometimes just one drug, or three, can change the life of just one person in unimaginable ways.
And then I explained how I still use supplements and herbs and plants and holistics, and I carefully balance everything, and how I met with half a dozen different doctors who all decided I did not have an addictive personality and that it would be perfectly safe for me to take the wonderful drugs every day. And how strangers on the internet tried to call me junkie and addict without knowing a single fucking iota of a thing about me.
And I explained that because I was in chronic pain, constant agony, and major suffering that was not going to stop on its own, it was safe and fine for me to continue taking the drugs, and fuck everyone who tells me otherwise. And then I explained how sometimes I am in far less pain than normal and when I took one of those drugs, nothing happened. At all. So I was not becoming addicted, because I felt nothing if the pain was not great enough to require drugs.
And then I said a few more angry things about judging strangers because you are not actually concerned about them, you just want to project your personal bullshit onto someone who is doing something that perhaps you or a loved one used to do and it led to addiction and it was horrid for you, and perhaps you have made it your superhero mission to save everyone you encounter from the awful evil Big Pharma that destroyed your life, and perhaps it's easy to yell at people over the internet because you don't need to see their faces or show your face and you feel you have perfect control because the poor stranger is obviously spiraling downward into a terrible tragedy of dependency that only you can save them from.
And by "you" I mean "stranger asshole who decided she knew exactly who I was, what was wrong with me, what I needed, what I didn't need - because obviously those Big Pharma drugs were killing me rather than saving my life in multiple ways."
So, I sincerely apologize if anyone reading this feels slapped, because that is not what I'm trying to do. Normally, when someone gives me the "Drugs bad, herbs good" speech, I just smile and say, "Balance and harmony in all things. Every person is different with different responses to different treatments. Some patients cannot take supplements, and some patients need drugs to continue living a fairly easy life. I am very lucky that I can easily take pharmaceutical drugs and natural supplements in balance. Maybe some day, I will find a plant or vitamin that can legally replace all my prescription drugs forever. I doubt that, because I need certain drugs to keep certain illnesses in check, but if I can reduce the prescriptions and have a supplement as my main treatment, that would be wonderful. Until then, nobody needs to tell me what I should and should not do with my medical health treatments." And that is the most polite thing I can say.
brightlotusmoon: (Default)
This sums up too many things for me. It shatters and heals my heart.
Thank you, Shinga.
http://shinga.deviantart.com/art/Into-Dust-326278238

The body sings in harmony with the brain since the beginning. And when the connections are shattered and the harmony is broken, the only thing left to do is write a new song, even if it takes until the end.

*I cannot sing. I cannot dance. But I can write. I can speak. I can dream. And I can fight.*


http://www.youtube.com/watch?v=aJ4RMyI90_o

I don't want to describe the pain today. I don't want to describe the seizures this morning. I cannot stop thinking about the dreams when I slept, the insomnia until four in the morning, the anxiety attack upon waking, the desperation to feel happy, the lack of appetite, the desire to feel comfort.

The best things about today:
All three cats surrounding me on the bed.
All three cats following me down to the living room, with Luna trilling, mewling, chirping, barking, begging for hugs.
Still being able to smile and be amused by Futurama and My Little Pony Friendship, which I think have been saving parts of my sanity.
My amazing husband calling from Las Vegas to tell me that he will be home a day early - tomorrow morning, in fact.

And so, I drink my superfruit smoothie, swallow my medications, perform my meditative magics, and try to mend my cracked rhythm for another day.
brightlotusmoon: (Default)
Well, hello, migraine and swollen wrist and swollen knee and electric fire pain in every muscle. I am totally going to stab you with pills and remedies.

Luna apparently wants to help, because is on my lap and she keeps licking my face and purring excessively. How often have you had a cat stick its nose up your nostril?

I feel essentially empty and cold, and my smiles are superficial and there is no laughter. I don't feel; I observe emotions. Sometimes depression with anxiety will do that.

I may have PMS, but that excuses nothing. I will continue to entertain myself, and at some point, something will break through and I will laugh and feel and become a shining, shimmering dancing pixie. But not right now.

Soon enough. This is why I have a Facebook, and these friends who know.
brightlotusmoon: (Default)
I am still trying very hard to figure out what the hell I did to get this crippling fatigue and joint pain today (answer: nothing), but I am waiting patiently for the current usual supplement cocktail to fully kick in: 1 B-Complex 100, 4,000 IU Vitamin D, 240 mg CoQ10, 1,000 mg L-Tyrosine, 600 mg Yerba Mate extract (yielding 48 mg caffeine), 500 mg Moringa extract, 500 mg Sea Buckthorn extract.
I am actually nodding off a little during typing, which is always irritating; but the wrist braces do make the typing more pleasant.
Futurama is on Netflix via the Roku Box in the background. Unlike the PS3, the Roku Box requires me to press OK to play each episode rather than letting each season continue automatically, which requires me being alert enough, which is helping. Also, laughing at funny things on the internet is helping.
My joints and muscles and nerves feel like shattered glass today. Sometimes the pain is enough to jolt me.
It could be the weather. Again.
On the bright side, yesterday's migraine has been fully relieved.
brightlotusmoon: (Default)
I love you, chocolate!

Reminder to self: Since the husband won't be home from work until Sunday, grocery shopping will need to happen tomorrow, as much as I can carry on the buses. It's too late to schedule a MetroAccess ride, but that's fine. I only need enough to last me the weekend. Safeway always has good deals.

I need to feel better tomorrow. This is ridiculous. Meditation and medication shall happen. Some qi gong, too. Also stretching. And more laughing.

I know fibromyalgia flares can make me feel like I've been run over by a truck, but it's rather enhanced today. I keep pouting in between laughing at My Little Pony FIM episodes and Futurama episodes. Sigh.

All I know is that right now, this widespread pain is so intense that I feel like I'm losing my mind. I feel feverish yet my temperature is average. Every movement is like burning or knives or burning knives. Thinking too much hurts. I want to sob and howl and cry for help. I know it will be over, but right now I am in one of those capsules of agony, you know? I am deep inside my body screaming until I have no voice. It's just one of those days, I suppose.

People wonder sometimes why I keep writing random itineraries here in LiveJournal. It's easier on my "disintegrating memory" (exact words from a psychologist during my SSDI profile). Also, there's a reason I keep my seizure diary here.

I'm starting to forget things already. Ah, right. Groceries. Friday. Yes.
brightlotusmoon: (Default)
Whimper. It's like Wharrgarbl, but quieter.


My mother-in-law had this treatment down in Florida, and she can't stop raving about it since it helped her spinal stenosis.
http://www.strokebreakthrough.com/videos/
I watched one of the sciatica videos. It made me cry. I hope people who successfully have the treatment really do well. It sounds rather amazing.
Said mother-in-law called me yesterday to ask about the herb Devil's Claw, which I did know about instinctively. She's taking more supplements than prescriptions, with her doctors' approval. I'm happy that she is feeling so much better.

Speaking of that side of the family, Adam did a sort of travel bounce: He returned from Pennsylvania yesterday afternoon. He took his luggage bag, dumped his clothes into the washer and dryer, then put them right back into the bag. This morning, he woke up at four, went to the shop in Virginia, and flew to Nevada. He's in Las Vegas until Sunday night. He'll be home to Maryland on Monday. We think he will have a few days off after that. He's exceeded his hours for the pay period and then some.

The sciatica has been flaring since this morning. To put it in perspective, the pain is much less painful than when I was seventeen and unable to sleep without an adult dose of codeine. Compared to the year I spent as a teenager screaming every night, this flare is quite controlled. Annoying and irritating, but controlled. Then there is the fibromyalgia flare, the widespread nerve pain, the joint pain, the headache, the sinus pain, the Raynaud's flare, the lumbar pain, the neck pain, the shoulder pain, and the PMS. I'm doing fairly well for wanting to rip the heads off dolls. The medication and stretching is helping. But I am very cold and a bit numb.

I am... very tired. Exhausted. Fatigued. Drained. Worn out. I want to say depressed but I still don't think I'm depressed.
I'm just... tired.

flared

Jul. 5th, 2007 06:09 pm
brightlotusmoon: (Default)
Gonna go curl up and try to go unconscious for a while. I have Motrin.

I don't like feeling broken for no real reason.
Other than annoying physical disorders and disabilities that I did not ask for, did not bring upon myself, and did not just happen upon after various grievous injuries.

When most people I know say "Ow I hurt" it is because something happened to hurt them. When I say "Ow I hurt" it is because my central nervous system has forgotten what "normal without chronic pain and fatigue" is like. This cycle is otherwise known as "Living Every Day".

In as many days, the third person asked me, in awe, how the hell I am able to live in so much constant pain and still function as completely and normally as humanly possible. My response is to blink in surprise, shrug my shoulders, and say, "It's my life. I have to live it somehow. I have no other choice."

However, it's nice to know that I am admired for my strength and bravery, because I will always need something to get me through this.

Hello, life. Quit pestering me with this crap. Um, please and thank you.

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