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)
Because part of All The Therapy is blogging my feels. And this was short enough anyway.

'kay.

I'm having a Being Elsa day. My symptoms are awful and well beyond control, and the smallest thing triggers the fibromyalgia pain and the mild C-PTSD symptoms. I cannot even hear or read someone speak from the cult of positive thinking without internal screaming.

I've seen many other friends here having similar issues. I'm not dealing with a terminal disease, but said terminal friends keep reminding me that we are all "In This Together" (that's my current ringtone. It's from Apoptygma Berserk).

I admit, the Being Elsa days seem to counter the Being Alice days (Being Alice is my code for epilepsy, seizures, and postictal aka post seizure state. Being Elsa is a new code for mental illness and neurological disorders including all chronic anxiety, social phobia, chronic stress disorders aka complex post traumatic stress disorder, sensory processing disorders, and some co-existing conditions linked to spastic ataxic cerebral palsy).
That was much words but I was born full of words. I blow word raspberries.

I totally do have gleefully joyful fun talking about my medical history. Interested friends have told me that I tend to discuss it clinically and technically, as though describing a patient who is not myself. I've been told that my medical and scientific wordening as a curious patient has helped fellow chronic illness patients examine their own conditions closely to find ways to help treat specific symptoms. That is such an honor.

Anyway. Is anyone else having their own version of a Being Elsa day?

(Alice is from Alice in Wonderland and Elsa is from Frozen. Because of what happens to them. Etc. I actually still have not seen Frozen all the way through yet. I will, obviously, and it will be many times. But I relate desperately well to Elsa, her hidden aspects, her representing disability, autism, childhood abuse, chronic anxiety, PTSD, personal orientations, and her love for a sister beyond a potential unnecessary husband. I only have chosen sisters and I love them so hard like the stars.)
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)
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: (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)
Seizure happened in the kitchen. Jupiter meowed and rubbed against me while I crouched. Adam came in and gently lay me on the floor. My eyes were open and blank. Adam touched my face and reached for my mind, and I spasmed and gasped and blinked. I asked why I was on the floor. Adam helped me up and stood me against the large freezer. My memory is swirling. Alicia is holding me. Earlier, Adam said he told his boss, a fellow animal lover, that he needed an extra day to care for his wife. I rolled my eyes and said that was not necessary; that I was fine. Never mind. It was so dark and so white equally braided as order and chaos magics. I was spinning at ninety-nine percent light speed and thirty-five miles an hour. The world was elsewhere. A few seconds lasted a thousand years. Adam suggested I go upstairs and rest. Jupiter is suggesting a cuddle. I am thinking coffee and clonazepam and baclofen. I am made of light and love and pure order-chaos magic in its simplest form. I can give myself the right strength. May be that I can regenerate. As brightly and intensely as a Time Lord. I always shine enough for everyone.

brightlotusmoon: (Snow White Blood Red Dragon Witch)
So, I'm not going to fully describe the four distinct simple partial seizures, the Raynaud's flare, the lumbar and sciatic spasms that literally crippled me and put me on the floor writhing, the chondromalacia patella flare that was just purely evil, the spastic hemiplegic flare that left my entire left side feeling ghost-like, the fibromyalgia burning that I compared to nerves hooked on heated barbed wire and connective tissues touching a bonfire - skin included - the sinus and jaw pain caused by my generally being irritated, the depression, the twitching anxiety.
Details are pointless. But since I am a disability advocate, I will leave this open for questions and stories and understandings and commiserations and complaints, since a huge percentage of my Friends List is disabled in some way.

My female cats are taking turns jumping on my lap and nuzzling me, occasionally preventing me from getting up. Obviously I could remove the cats from my lap at will, but I don't want to, and also they kind of dig in because they really want to hang out. Fine by me.

Although, if anyone actually wants details, please ask. You never know.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
Well, this water damage debacle is getting more and more interesting. That tree that was chopped down out front? For no reason? By a third party company? Is almost certainly the cause of our problem. Since our own property was not the actual initial cause of our damage, things are now moving at a fascinating pace.
Our kitchen will need complete remodeling. Our living room carpet will need replacing. Contractors will need to add labor to the bill, which will probably easily exceed the limit that the insurance company will pay. We may need to take out a bank loan. HOWEVER. If none of this is our fault, we may be able to get all this work done with minimal financial stress. I don't know. I don't fucking know anymore. I cannot think straight. I've had two seizures and I am still so post-ical it is not funny.

Last night I knew I was about to seize. I went to the couch. Five minutes later, I woke up twisted and half on the floor, tongue hanging out... with Luna sitting on my torso purring like mad, licking my face and meowing loudly. My first words were garbled and included, "Where am I?" and "What happened?" and "Hi, Luna, love you."
I stumbled downstairs to get a hug from Adam and burst into tears.

Complicating all of this: I have stalkers online. In a chronic pain community, someone has some kind of strange vendetta against me, because I apparently said something they were offended by after I gave them advice. So they won't leave me alone. They believe I wronged them. I have blocked them. They are finding ways around it. But I recognize them. Hah.
On Facebook, a very immature male person wants me to be his wife. I blocked him. I am about ready to go on a blocking spree. I don't care anymore. I used to care. I used to be innocent and naive and kind-hearted until... well, now. Now, I have started to become cynical and snarly, and I now recognize delusional thinking when I see it. People like to put blame everywhere but on themselves. People are terrifying. Fuck it. I truly do not care anymore. And that is shocking, coming from me. Let them have their creepy online lives. I have my own life. This is absolutely the post seizure brain talking, but I absolutely agree with it. People who don't know me need to leave me alone when I'm in a bad mood.
I am the Snow White and Red Hiding Hood nobody mentioned in any fairy tales. Poison makes me stronger. Wolves are my family.
No, this online thing... this isn't even a complication. This is a mosquito. Online bullshit is nothing compared to the emotional stress and damage I've been going through since the flood.

In the meantime, my creative writing is flowing. I can work with my characters all over the place. I feel happier than I felt before, at least. Which means still depressed, still stressed, still panicked, but able to use stories as outlets. Yes.

Now I am just drained, wrung out, exhausted, and in need of a nap. My brain has reached capacity.
brightlotusmoon: (Default)
I don't know why I find this so strange, but this is my brain:
During these post-ictal severe pain states, I tend to be quite verbose and effusive in writing much more than I am in verbal speech.
Talking with my voice becomes mildly improbable, weak, abstract, and inept as I stumble. But in writing, my brain can move quickly, pause to check itself, and encourage my fingers to pull forth just the right words.
Naturally, my parents frown upon my constant use of the internet's social media to communicate, including email, because they want to hear my voice, which they call mellifluous. But there is no dulcet fluidity in a voice whose owner has been struck with temporary neurological damage.
However, sometimes communicating via writing, typing, and online social media really is just that much more powerful. And it gives my mouth and throat ample time to rest while those complex speech areas of my brain that had been momentarily damaged can gather themselves and become once more coherent.
It really is very embarrassing to speak out loud and find my words too jumbled, my tongue tripping up, my emotions spilling over until my voice cracks because I cannot convey what I need beyond the simplest of words in the manner of a fairly intellectual toddler.
Even when I have been hit by those neuron storms, words are very easy to find. Making sure others hear those words in the context I need can be so difficult that I bring myself to tears.
I am certain you know what I mean, friend's list.
brightlotusmoon: (Default)
Cut for currently uncharacteristic whining and grumping about menstrual weight gain, bloating, body measurements, and numbers. Because damn it, I need to let this out somehow.
Read more... )
Body health and muscle health doesn't happen overnight. I'm over 30; my body is changing. And I am not helping myself by mentally snarling at people who whine about their perceived imperfect weight issues when they have absolutely none. I am also not helping myself by imagining my mother telling me that I was becoming overweight because I weighed more than 110. She essentially wants me to be as thin as I can because for her, thin means healthy. I love her so so much, but I really do think she has a mild eating disorder of some kind.
I am fine. My health is fine. My doctors say I'm fine. I eat small portions of healthy food daily with occasional small portions of junk food. Nobody can force me to eat or exercise a certain way.
And that's what I tell myself during my mental bitchslaps to myself.
I'm fine. I'll be fine. I'm also stressing too much about next week's hearing.
Dear Joanna: BREATHE. FUCKING RELAX ALREADY, GODS ABOVE AND AROUND, JUST BREATHE.
brightlotusmoon: (Default)
Damn you, brainbody. I just took my seizure pill an hour ago. I just took a panic pill thirty minutes ago. Stop it. Stop doing this. No need. Stop. Oh, my head. It's all floaty. I need to stay out of Wonderland. That's three this month. QUIT IT.

I'm okay. I'm okay. Oh, look how bright the world is now. Hello. I'm going a mile a minute. What is this, post-ictal hypomania? I don't know. I'm fine, though, I'm fine. I'm not panicking anymore. I'm laughing. "Forget your troubles, c'mon get happy, you better chase all your cares away." Hugh Laurie sang it best, anyway. Hey.

I feel so freaking giddy, it's like being drugged without the drugs. I'm all tingly and shivery. People pay good money to feel like this, I'll have you know. But it's still very bad. It's still a storm in the brain. I'm laughing. I shouldn't be laughing. It's a... what, a reflex? I guess. Ha ha. Ha.

I have to write it down, I have to write all of it down so I know for later, so they all know, the doctors and the lawyer and my loved ones. It's important.

Sigh...
I'm all right. Really. I've recovered and my brain is calm. The trigger was stress and panic. I don't remember why I was stressed. Something to do with the future, and Adam, and insurance companies and money, I don't remember. I scare too easily anyway.
brightlotusmoon: (Default)
Gods, complex partial seizures are weird.
Yes, I did quote a Katy Perry song in my entry title.

The seizure happened in the car. Nobody noticed. Adam was helping Charlotte get her stuff into her house. We had been on the road for over eleven hours.
All of a sudden, my legs went numb and I felt a yank like I was being pulled out of my body, and then I couldn't move, and my heart began racing and I began sweating and freezing, and the world began to go away, and I saw Alicia in my mind, arms stretched out to me; she was smiling. My alter ego epilepsy companion, who looks like Alice of Wonderland fame all grown up in blue jeans and a warrior's grin. I fell toward her, through the looking glass and down the rabbit hole. I was in two places at once. I was aware of the real world, my body, the car, the biting cold. I couldn't do anything about it. In my mind, I began to cry. Alicia pulled me into her arms and whispered something. I don't remember it. She then shoved me backwards, and I was falling again. I shuddered violently, but I don't know if it was in my mind or my body or both. I was lying in Sirena's arms. Sirena, my alter ego who helps me with chronic pain. She stroked my face and said things, but I don't remember them. She melted away, and I was back in my body, spastic and clenched and shivering and I wanted to lie down.
Adam came back to the car. I put on a mask and acted like everything was normal. I did mention the seizure, but jovially. We drove home. I put my body into task mode. I clenched and unclenched my left fist whenever I could, while I was carrying bags and unpacking bags, in order to ground myself. I was sweating and cold. I still have not lain down. I can't. My body is too spastic. I probably won't remember writing this. I don't remember the long drive very much, and even the stops in Philadelphia are starting to splinter a little.

I'm fine. It was a long drive, and there was stress and tension. It's fine now. The cats are loving me, and my husband is on the other couch playing video games, but I can feel his love from here.
brightlotusmoon: (Default)
And now I am back to being panicked and terrified and completely lacking in confidence.
I wish I could be one of those people who can thrive on stress and panic. My husband can. He is my rock. I would not be anywhere without his support.
I should be more like a Goat. It is my Chinese zodiac sign. Goats lead. Goats are nimble. Goats jump off cliffs with confidence and leap with ease to other cliffs. Goats are sure-footed.
Goat.
I am limping so badly that I am considering using my cane inside the house. My everything hurts. I have to stop stressing. The pain is like the Nothing from The NeverEnding Story, sweeping across my hippocampus and amygdalae and possibly attempting to drive me insane.
I cannot control the future, only parts of myself.
brightlotusmoon: (mirror girl 1)
Fatigued.
Even with espresso.
Charlotte came over after Adam and I returned from the chiropractor.
We had a yoga session downstairs, after I took a Soma and got relaxed enough.
My nerves are still on humming edge. My ninety-day evaluation at work happens on Monday morning. I am sure my boss likes me enough, but hell, I don't actually know. He seems to be dropping hints about the future, like projects happening later in the year, but I've never done this before, I have no idea. I have been so highly stressed that I have vibrated on occasion. Have you done a three-month evaluation?
Cats are always, always ideal for calming me down. So is husband. I love practicing magic and meditation with him. I love living magic with him.

Dreaming, Chuang Tzu became a butterfly;
Waking, the butterfly became a man.
Who knows which is real?
Who know where endless changes end?
The waters of the deepest sea
Return to the smallest stream.
The melon-grower outside the city gate
Was once the King of the Hill.
Even rank and riches eventually disappear.
You know, and still you toil.

-Daily Zen
brightlotusmoon: (Default)
When my husband and I practice magic together, he likes showing off his skills at fire magic, heat magic. He tells me it's easy to do, to call up that dragon fire in my solar plexus, make it radiate, push it out through my hands, healing fire, healing heat. I never could do it very well.
Now I feel as though I did it very well, and I wasn't trying, wasn't aiming for magic, nothing of the sort. This is just my internal thermostat responding to a fibro flare. This is just me being in pain.
The flare is in the shape of Fire, but it's more than that. Baby dragon made of flame curled up in my body, stretching out every now and then so he fills me completely and I am burning. Literally, heat is pouring off my skin; I hold my palm inches from my forehead and the heat from my head and the heat from my hand meet and clash and push against each other. The amber stone in my ring and the amber stone in my pendant are actually hot to the touch.
And in all this heat, there is the pain, of course, but it's a dull, aching, pulsing, burning, draining quiet pain. I'm so exhausted I could crawl under the desk and sleep, but I can't because I need to finish all this work.

A few people in the fibromyalgia community have written about how to explain the types of pain and fatigue to people who don't understand. It is difficult, because the pain moves, it's not always the same, it's not always intense. I have been told many times, "Just take a painkiller and the pain will go away and you'll be fine." But fibro pain doesn't work like that.
In fibromyalgia, the response to pain is strange and unique, intense and erratic, heightened and extreme. I can't just take a pill and expect everything to be okay. Painkillers don't make the pain go away, they just make the pain go farther away. Does that make sense?
You and a friend are tied together by an extremely long, stretchy rope. You are in a place the size of two football fields. You tell your friend, "Run all the way to the end of the first football field, and tug on the rope halfway there, and the tug on the rope again when you're all the way there." Your friend does this. You can feel the rope stretching, you can feel your friend on the other end, but he is moving farther and farther away. You can still feel him, though, because the rope vibrates with his movements. He tugs on the rope and you feel it a little stronger. Then you feel him slightly less. There's the vibration of the rope, but it's more distant. Then, he tugs on the rope again. You barely feel it. But it's still there. He's still attached to you. You pick up your cell phone and call him, and tell him to do the exact same thing with the second football field. And he keeps going farther and farther away. Not completely -- you always feel him -- he's just so far away that you can barely tell when he tugs on the rope that final time. And in the meantime, you're doing other things, going along as if you don't have a rope attached to you, even though you are always aware of it.
Or, this one: You are in the woods, being followed by a wild animal. You and it have come to an understanding that it does not attack you so long as you do nothing to provoke it. It follows you at a respectable distance, and you are constantly, nervously aware of it. Occasionally, something might happen that startles it -- maybe you make a sudden move -- and it rushes closer with no warning, at times right on your heels. But as long as you soothe it, it keeps its distance.
That is what happens when I take a good painkiller.

I took a good painkiller. It doesn't do much for the fatigue, but that pain beast is far away right now.
brightlotusmoon: (Default)
...so I won't. Because panicking won't get me anywhere.
But I am still struggling to breathe. Because I have a very negative balance in my checking account, and by the time the fraudluent charge is investigated and I get the money back, it will be the very end of the month, and my direct deposited paycheck will probably be depleted a bit, and that sucks. But I can only hope that the bonus I'll get will be decent enough to help cover the important bills. I can only hope that my roommate will start getting better paychecks so I can get some rent money to put toward bills. It's all about bills and bills and bills.
Just...
don't panic, I tell myself. Yes, you were stupid somehow, and somehow someone stole your bank card number. But you did the best you could.
A couple more weeks and it will be okay. I'll have my money back. And my husband will be home, and my cats will feel better, and I'll get my house cleaned up, and it will be okay.
And really, it's not so horrible. It could be much worse. I tell myself, quit whining, you're not so bad off.
I have some cash in my wallet. I can bring my lunch to work from home. I don't have to pay for transportation. I don't need to go anywhere or do anything on the weekends. I can live. But it is just that breathlessness of waiting, of nervous anticipation, and I'm a classic worrier and anxiety-driven and I just need to take some deep deep breaths.
...because my body is in a state of near collapse, the pain beast straining against the web in the ether, the electrical current rushing like lightning under every part of my skin, all four elements pounding and screaming across muscles and tendons and joints nerves, migraine threatening to wipe out all coherency, and I am shivering and cold and the Raynaud's is flaring. It's stress, I say. I am doing this to myself, I am allowing stress to destroy me. I will not allow it to control me, I will not allow it to hurt me. I will not, I will not, I will not--
...because I'm stronger than it, I am stronger than all of it, and I will not give in, because it will kill me, and I deserve this strength--

YES.

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