My garden

My indoor greenery that helps me cope with being inside all the time.

Plants I want:

The running plan is to turn our sun room foyer from a storage room to a winter garden that I can sit in and admire and smell and pamper.

Bam! Bam! Man with a Plan!

So I was a terror today. I got so much done after a seizure, and my body isn't trying to kill me right now! I feel I finally happy.

I did some more research on wheelchairs. The one I want is a fixed frame aluminum base. It weighs 20 lbs. the problem is its $1600. I need to figure out if it's worth the investment. I need to figure out how long I intend to use it. If it's going to be a staple of my classroom teaching, it'll be worth the investment. If either my great aunt or grandmother will use it after I'm done with it, it will be worth the investment. As they both will eventually move in with my parents who will be moving to Harrisonburg...this may be a good option. Actually, that might have sold me on it. Even if I don't use it for a long time, my family still might.

I discovered I need to go to the department of social services to get my medical insurance figured out. I'm on disability and I don't qualify for insurance? Something seems strange about that. If I have to lower my income with disability so be it...my medical bills aren't paying themselves, and I can't work yet to pay my bills. (I'm hoping within the next year)

It's disappointing. I asked someone I care. Deeply about for her approval with using the wheelchair. I got a platitude. Some people just don't understand conversion disorder. I'm trying to find ways to succeed...to become a positive productive member of society, and for some people, the fact I'm not succeeding quick enough means I'm not trying hard enough. I'm not pushing hard enough.  The fact it's someone I love and care for makes it hurt more, and honestly kind of makes me want to hide myself away. To know that if someone I love thinks I'm in control of this...means that other people feel the same but are less vocal about it.

I wish I could control it. I wish I was faking. I wish I could jump up and call disability and say "thanks for everything. I'm all better now. I'm going to get my old job back, go back to school, and move on with my life. I'll pay you back through taxes! Peace!" But that's not happening. I'm doing the best I can with the cards I've been delt. It'll take me a while, and I may never be 100%. But I am trying every day to get better.

On a lighter note:

I also planted some jasmine seed. For some reason, the cuttings of jasmine I brought in from the back yard covered my table with seeds. I'm alright with this as it means I get to nurture a young jasmine plant from sprouthood. 

I started making the cats a floor scrather. They like horizontal scratching, and we have a lot of unused boxes. It shouldn't take me more than 2 or three more hours of gluing them together.

I also decided I'm going to start reading and posting it to YouTube. I've gotten fluent enough to be understood by an audience. I still stumble, and my comprehension is (although much better) still shite. But my fluency is pretty good, and I can use it as a way to encourage myself to speak without my accent. The firt book I'm reading is "Alanna" by Tamora Pierce. 

I also finished a short novella (it may have just been a short story. The font on my kindle was really big) It was called "Gears of a Mad God" I forgot who it was by. It's hardly important though. It tried to be steampunk meets Lovecraft, but it failed to deliver. It kind of reminded me of a campy show before it realized it shouldn't take itself too seriously. At least the writing was decent, though. I still had to reread a lot, but I made it through.

And Joe seems to really be liking "Sabriel" I have a lot of problems retaining and comprehending what im reading, but my fluency is kicking ass! No more sweating to get through a chapter. Instead, I loose about 30% of the content of what I read. And I don't reread passages when I'm reading to joe unless I need to. Mostly I rely on my memory of what the book says. 

I wish I had someone to help me with my medical stuff. Not the paying...but dealing with disability, financial aid, Medicare, the different doctors, bills, and all the non recovery stuff that marches on as if I weren't trying to get better. I wonder if I can get an advocate...a social worker of some sort, to help me get through this stuff. Call the people I need to call when I'm speaking in tongues. (Which seems to me about 40% of my spoken word right now) I'll talk with my therapist about it Thursday after group. 

I'm not looking forward to group...

A peak into insanity.

I was going to save this poem for Halloween, but I'm just tired and I want to put it out there.

Backstory to this: I have some voices in my head. They're normal voices not scitzophrenic ones. They are just obnoxiously loud and intrusive. There's the one I've dubbed the narrator. It's an androgynous voice that narrates my actions and inner thoughts, much like if it was reading my story in a book. There's the manifestation of the depression...you know the little voice in your head that tells you you're fat, stupid, and no one loves you...that's the guy. I also will close my eyes and he'll show me disgusting, vile, and heartbreaking scenes. Like a mountain of half butchered dogs. And he's also the one that is obsessed with me killing myself. I don't much like that voice, but again, it's how my mind translates the depression. It separates it from myself because I don't like it. Rejecting it doesn't destroy it so it just kind of chills there like an I welcomed guest that could kill me if I let my guard down. I can deal with that a lot better than the last voice...

The little girls voice. Sometimes she sings which is annoying but tolerable. You've had a song stuck in your head. It's like that, but instead of Nirvana, I have "Oranges and Lemons" or fucking "Hickory Dicory Dock" with this little girl singing them. And that's still preferable to the never ending scream she has going through my head most days. That is panic attack inducing. I know there's are just manifestations oft warped psychy trying to deal with my thoughts. I don't actually hear the voices. The doctors say it's a bit abnormal for the thoughts to be so intrusive, but not that I've anthropomorhized the thoughts into unique voices as a coping tool.

Anyway, a while back, the screaming got really bad in my head, and so did the panic attacks. I wrote a creepy enough poem to cope. I've only shared it with Jess. She seemed to like it, so i guess I'll share it with the 3 other people who read my blog.

"Scream"

By Nara s. Vogel (my pen name)

There's a little girl inside mind

Made of Pictures, ashes, broken glass

Ivory lace, salted rust, and spilt wine

She crawls along the rough hewn floor

Leaving roads of ruby ribbons 

Rotten bits of flesh and fabric torn

And before I lay me down to sleep

She crawls into a fallow recess

Where terrors lurk somewhere dark and deep

I know I feel her, but can't see her, 

And she's softly rocking in the dirt

Like clock hands, Stiff and stern.

Scarlet slivers shiver down her hand

Fingers digging in her autumn hair

With the screaming never really planned

as the sandman cuts and fills my bones

My vodka fingers feeling heavy,

And Diseased Legs have turned to stone,

A shard of green glass escapes my eye.

Reflecting a thousand wounded hours

The darkness there kisses me goodnight

Around my ears, her lullaby wreath

Is twisted, rusting, carved in echoes 

Because the girl doesn't need to breathe.

Strip me down and what am I?

So I'm skimming through an email I get from "The Art of Charm" (a podcast I highly reccomend, by the way) and the host Jordan is talking about an awkward moment at a dinner party. I'm having trouble reading today, but something caught my eye.

"I care about authenticity because it’s the glue that makes great social dynamics work. Without it, social dynamics are just diagrams, words and body language. Empty theory.

And as you know from last week’s email, being real is a subtractive process. You become authentic by consciously removing everything that isn’t authentic, by not trying to be anything other than what you are."

I was thinking about it from the angle of my disability. I feel empty like I'm watching my life on TV. The moments that feel real are few and far between. Mostly I just find myself faking realness. And maybe that's the problem. Maybe this disaccociation is a product of me not being my authentic self, but rather doing what is expected of me.

So, if I think about what makes me feel authentic, what makes me feel real, and I strip everything else away, will I get better? 

Who knows, but it's worth a shot.

What makes me feel real? Joking around with Joe. Being held by him. Physical pain. Talking about LARPing. Missing teaching. Fear that I can't hold it together. Laughing with my family. The rest is automatic. Even my most charming moments. Especially my most charming moments. 

Maybe I need to make it an ongoing project to get rid of all the things that make me feel unreal. I think I need to become more humble about my situation. Strip myself of any automatic. I don't know how I'll do that, but bit by bit I think I need to turn all the "should bes" in my life into "as they are." We'll see how that goes...

As another note, I went grocery shopping with Katie the other day. I needed a wheelchair, but I hate the electric ones. They had a manual one, and I loved it! I could keep up with Katie. Sure I had problems reaching stuff, but I wasn't controlled by my staggered walking, or the feeling of exhaustion that goes with it. I also felt exhilarated because I was moving so fast under my own power. I had a hard time gripping the wheelchair only a hand full of times. But it was my own power! I've decided that I want a wheelchair to feel that way more often. I think it would be great to get some cardio and strength training even if it's in my arms. 

It's also a feeling of confidance. When I'm walking with a walker or with support, or even when I'm shambling about on my own, I feel judgement and the pitty in the air is almost palatable. I fucking hate that. In the chair I could do anything. Hell, I feel like I could even go shopping on my own without fear if someone drove me.

It seems dumb, but I felt freer in that chair than I have in the year that I've been walking. I felt proud and independent. I know people will probably think that the chair is a step backwards, but it's not like I'd be using it inside the house or for going over to other people's houses. I'd be using it for things like shopping, or getting out of my house to go on "walks" perhaps I'll be able to "run" in the chair before my legs will allow me to run on my own.

MAybe I can wheel myself to the rec center and start a pt pool regemine for my legs. I could start subbing more quickly without having to worry about the exhaustion of standing. So many doors can open up if I can just sit down.

Also, think how big my arms will get! She-hulk cosplay from a wheelchair for katsucon? Maybe even oracle! Wouldn't that be amazing...me cosplaying at a con! 

I could start subbing and going back to school sooner too! But who knows. A good wheelchair is expensive. And I'm having trouble even getting Medicare. I can't imagine the mind blowing amout of paperwork I'd have to do for a chair...

And then I fear everyone would discourage it, imagining I would use it as a crutch instead of a tool. Which is how a lot of people felt about my walker too if I remember correctly, which I'm probably not.

I don't know...

Anyway, score one for me. I narrowly avoided a seizure today thanks to joe. Still hurt from some very bad contortions, but my brain isn't mush, well not completely.

Go me?

All my friends are at Dragoncon, LARPing, or having a great vacation...and I'm laying in bed thinking "I just went grocery shopping for the month and spent less than $175 for two people. Go me?"

Seriously though. Yesterday my pain was at an 8 as opposed to its normal 2-4. So I didn't get to go LARPing. Joe got me a baconator for dinner since I was craving red meat. Also, I joined a FND group on Facebook. I'm getting a lot of useful information. The most useful information in some time. Normally I have to inform doctors what I have, what its name is, what causes it, etc... It's nice to see actual people with conversion disorder living their lives and adapting to our condition day by day.

I've also rediscovered I want a wheelchair. Not an annoying electric one, but a real one. I like it because if my arms are working and my legs are not, it's convirniant. Also I feel like it will get me to working faster. I might need to invest.

In it to win it?

Every day this week has been for therapy of some kind. What time I haven't spent at the doctors has been spent sleeping, or doing reserch on this thing. I've spent so much time with my disorder this week it hurts...literally. 

Even though I'm tired, I hurt, and I really just want it all to end, I've made a lot of discoveries this week.

The most poiniant one is a question Joe asked me. Do I really believe I can get cured? I've put some thought into this, as it's a hard question for me. Hope battles with abject realism inside. And to wrap it all up in a messy package, I don't know what I should believe. If I put too much hope into being completely cured there will (statistically) come a time when I'm not, and because I fell short of my goal I'll fail to see that better is an acceptable alternative. But, if I put my goal at a realistic level, let's say able to simply  work and take care of my household with minimal symptoms, and put my goal in improvement rather than an end all-be all goal of being completely cured, no matter what the result, I'll be happy...because getting better is realistic whereas being cured is not.

 Sure, it's easy to say "I believe I'll be completely cured" but cured may not be realistic with current medical treatments.

To quote dr. Mark Edwards, one of the leading researchers into FND "The short answer is yes. We know from our current understanding of how the brain malfunctions in FND that the basic structure of the brain is normal. This is a good start, as it means that recovery is in theory possible.

There is of course the question: “what does ‘better’ mean?” Some of you in your questions asked whether people with FND can get 100% back to normal. For other people “getting better” may mean something a bit different, like being able to do more of the things they want to do, but not being completely symptom free. I have certainly seen people with FND get 100% better. I think it is 

perhaps more common for people who “get better” to experience significant improvement in symptoms so that symptoms, most of the time, fade into the background and do not interfere too much with what people want to do day to day. This is not quite the same as being 100% symptom free, but it is clearly a big change which in a real way affects quality of life."

So what should I believe? What should be my goal? Should I be realistic, or should I get in it to win it?

My heart tells me that improvement should be my constant goal, no matter where that goal lands me. At the same time, there is a lot of power in positive thinking, and setting goals beyond your reach.

I want to be back to normal. If I could cure myself 100% I would do it in a heartbeat, but is it realistic?

Ultimately I think that I've come to the conclusion that having an end game goal is more detrimental to me than not. I think I should believe that I have the ability to continually improve and find ways to adapt my world to make it better. 

I believe that if I could get rid of the tremor, the chronic fatigue, and the reading comprehension issues I could lead a comfortable and functional life as a homemaker and homesteader. I think if I could get over those symptoms, the others wouldn't feel so bad. I would be able to live a comfortable life. It wouldn't be my dream job, but it would still be an enjoyable life.

Anyway, I've had a doctors appointment every day this week. I'm finished with thinking about my disability. I'm craving red meat, fried onions, a crispy salad, and an apple pie with tons of ice cream.

Still alive...

You know, I haven't really been able to access my feelings lately. I've been in a prolonged dissaccociative state. I've been struggling hard with my conversion disorder lately. I've even had to do an in patient program at the hospital.

The few times if actually felt like I've actually felt my emotions are when joe makes me laugh and when Jess told me something about the legends crew. (Wtf, guys?!?!) 

The hardest has been in regards to teaching. All of my teacher friends are ready for school and sharing their joy and excitement. But these are the people I was taking classes with. Most started after me. Although I am proud and beaming with happiness for them, it only serves as a cutting reminder of this aweful disorder.

I'm getting help. After my adventure with in patient psychiatric care, I got connected with a great behavioral health program in my town. I've had appointments all week this week and it's draining.

I now meet with a psychiatrist every 4 weeks to adjust my pills, a therepist every 2 weeks for cognitive behavioral therapy, and once a week I will be meeting with a trauma survivors group. I hope it works.

I've also improved my reading, I can now read two chapters in one sitting aloud. If I take a long break I can even do it twice in one day!

This weeks goal is to walk down to the thrift store, and get some pants that fit. I've gained 50 lbs since this started. Every time I zip up my paints ti only serves as a painful reminder, so out with the ill fitting pants and in with some new ones! 

I can still look stylish at 190lbs! And I'll be hopefully losing weight. It'll be a slow process since I can't really exercise, and shopping for foods that go bad quickly like veggies is hard being unable to drive, but I'm putting effort forward. That's what counts, right?