I have issues

The past couple days can be summed up with a series of expletives. But, instead of that I'll pop out some summaries:

I almost lost my best friend because she thinks that Amway will cure me. Yup... A quasi-religious legal pyramid scheme was going to cure my disability...I was willing to try it, but I think we figured out that even if I was well, it's just not the lifestyle I want.

I had to stop a suicide from happening out of state. It's still up in the air, but I'm doing all I can so...

I changed up what I'm doing in therapy. Instead of treating my PTAs and depression we are going to find my triggers for FMD/CD and figure out ways to adapt my life to them.

Still going to trauma survivors group. Still feel like I don't belong there. But I've picked up some good things, and it's free so I'm not complaining.

Got new sleep meds, and switching my antidepressant. The psychiatrist I'm going to is amazing and cuts the cost of my meds by getting me pills that work well and are cost effective! It's nice since I don't have insurance.

I did all the laundry in the house, and like 7 loads of dishes. I cleaned the bathroom (and learned 409 leaves a slick residue not good for floors) and decorated it!

Joe came home!!!! I made him grilled cheese for dinner! I'm so pleased knowing he's in the house. He makes me feel safe, just by being downstairs.

I don't actually have all the money I need for my wheelchair, but I'll be taking what I didn't get in the fundraiser and putting it on credit. Unless the unlikely event my parents will help me out...but I want that wheelchair! I want to start getting my life back, and this is the first step.

I still might have them help me with medical bills if I can't get more money from disability...

That's the skinny on my efforts this week. It's been stressful and hopeful. I'm working hard to get my life turned around.

Less manic

Joe called me. He always takes my stress away and calms me down. 

I didn't get as much done as I hoped, but I got two more loads of laundry done, and washed the bathroom sink. I even made myself some canned pasta for dinner.

I think I'm going to make mac n cheese for lunch tomorrow. It's my ultimate comfort food. Screw chocolate and ice cream, give me the sweet taste of dairy any day of the week! 

Now that I'm laying calmly in bed looking over the past few days with a level head I realize how neurotic I've been. I've placed too much value in people's opinions of me. 

I forget how strong I am sometimes when I'm in pain. And I am strong. The pain will come and it will go. I can't latch on to it even if it's caused by people I love, even if it's caused by my own body.

I can only take life one day at a time. I have support of friends and family. There will always be difficult people in my life. The only thing I can do is minimize exposure to the bad and maximize the good.

I am going to take my recovery and treat it with respect and dignity. I'm not going to allow the nay Sayers to effect that respect and dignity.

Because I am a badass. Because I put forth the effort to become stronger I am a badass.

And so ill be getting my wheelchair and then I'm going to fight for normalicy, or rather my version of it again.

That's why I fight. I fight for good old fashioned normal badassitude. All is well in the house of Laura. I have found my zen. I have let go of my anger, of my expectations, of my negitivity. I'm okay. I have a roof, food, love and support. Nothing else matters. No one can force their judgement on me. I have to accept it first, and I just don't care to accept their judgement.

Plus Joe said I'm cute!

Angry self nurturing

In therapy we talked about healthy self nurturing.

I found a box of red hair dye and dyed it...again. 

Because taking my emotions out on my hair is healthy, right?

I talked to my friend. The one who hasn't researched my condition. The one who thinks this is all in my head. 

Apparently I'm too lonely to loose a friend to this. I'm going to join amway because fuck it, I'm sick of fighting. Who knows maybe some good will come of it. Maybe she'll see me, the true me, and not her vision of me.

I told dad I tried to kill myself. I told him I spent some time in the hospital because of it. He felt betrayed. I felt bed. I might have dumped it on him because his words were hurting me. 

Fuck everyone. I'm tired of being a shut in from this. I'm trying my fucking hardest to get my house in order.

I just want a pill that magically makes this go away so I can punch everyone in the face. People who are healthy and smug and have never had their life turned upside down by their own body turning against them.

I don't even know what to fight for any more. Why am I fighting? Am I fighting this condition? Am I fighting for respect? Am I fighting the medical bills? Am I fighting people?

I shit blood today, and my stomach feels like it's being torn apart. My joints feel like I have rail road spikes in them. My head feels like it's gonna come out my eye.

I walk like I'm falling, and I feel like I'm falling when I walk.

I need to stop fraternizing, grow a pair, and get my shit together.

Shake it off Laura!

*deep breath*

Okay, here's the game plan. I'm going to rest as long as I need to, change over the laundry, then finish cleaning the bathroom. That's it. That's all I'm allowed to do today.

Tomorrow I will finish the laundry, and the dishes. That's it. I don't want to put myself back to being bed bound.

Sunday I fix the living room and scrub the kitchen.

Monday I'm going to brave public transportation for the first time with my walker. I'm going to go to the social security office, social services office, and the dmv if I can manage. 

I'll probably need Tuesday to recover so Tuesday I will set in order my finances, and make an appointment to get sized for my wheelchair.

Life would be easier if I could drive, but I have to play the cards I've been delt.

Fuck everyone! Im a mother fucking dinosaur!

That feeling when...

Why can't I just be normal?

I don't want to be unable to walk more than a few blocks on my own.

I don't want to doubt my own sanity every day. I swear I'm not making this up. I'm not just trying to get attention. Right?

I want to go out and do things on my own.

Tell me the last two days of me crying in pain in my bed weren't just in my head.

I want to do dishes. I dream about doing laundry. I salivate about going back to school, finishing my masters and having my own classroom.

Why do people I love make me doubt myself? They say I'm not trying hard enough. They say it's all in my head. The only thing in my head right now is their negitivity telling me that it's all in my head and I need to try harder.

I wish I could end their voices. They stay with me far longer than the amazing support I'm getting from my friends. They cut away the good feelings till all I have left are the self doubt.

It's all in your head.

It's all in your head.

As if I'd choose this life...as if I'd choose to be this pathetic thing laying here taking charity....living off the government...struggling to feed myself..

If I were a dog I'd have me put down. Most people would.

Would I actively choose that life? 

Would anybody?

I'm not happy with my life. I'm setting forth to change it. I'm asking for help when I need it. I am trying hard. I am being as brave as I can be.

Why does it have to come from the people who mean the most?

If I had the choice between this and death, I'd choose death. The truth of the matter is I am not a fighter. I am not a badass. I'm just fighting because it's something to do. It fills the void where my life used to be. Because fighting is less boring than laying in bed. Because to actively seek death would hurt people, and I don't want to do that. At least hopeless and fighting is more effective than passive and hopeless.

Because I do not believe in my heart that I will ever become a contributing member of society again. It's been a year since I went into the hospital, and longer since this started.

I feel so alone in this. I have so many unanswered questions.

I didn't choose this. Why won't they believe me. I want to be better. I'm trying so hard. Why won't they believe me.

I'm going to sleep. I can't be with these thoughts any longer.

Drunk moment of weakness

So, I've been a champ while joe has been gone, and normally I don't get weepy about being without my boyfriend. I mean, 90% of my relationships have been distance relationships. 10 days is nothing compadres to that.

Still, Jess brought over champagne and then we did girl talk till I was exhausted.

Now she's gone, im drunk, I'm tired, and I miss my boyfriend. There I said it! I'm not crying or anything (not about that anyway) but I really miss him. Mostly I miss his voice and his laugh and his adorable bushy beard. He's out of the country though so he can't call me. It makes me miss him more. I'm a sap I guess. I don't like being without him.

But I'm full of good things. Happiness at all the support I've received at the "go fund me". 

Something about being sick shows you who cares and who doesn't. Sometimes the truth surprises you. Sometimes it hurts you.

It's puta giant wedge between my best friend and I. It hurts that she hasn't even researched my condition. It hurts that she thinks diet, exercise, and the power of will will make me better. I hope she never has to count her spoons. 

It's brought mom and me closer together. I get her better now than I ever have before. All the times I've explained why mom was the way she was was always with compassion, but no understanding. We have had serious talks about coping skills.

I don't like feelings. I hurt. I want Joe. I'm going to go to sleep and dream about being a princess who can turn into an invincible dragon again. I liked that dream...well except the nightmare part where the evil queen killed everyone I ever loved.

But at least it wasn't a total nightmare this time. Bright side!

1 day productivity. 1 week recovery.

I've spent half the week bed bound, crying with every movement because I spent a couple days trying to be productive. I even thought I was doing well with my pacing, but I was wrong.

If it weren't for my amazing friends I would probably be a lot worse off than I am. The sanfords brought me an ice chest up to my room so I can eat more than chips and crackers. Jess cuddled me yesterday too.

And on top of  that I'm almost 1/3 of the way to getting myself a wheelchair because of the generosity of family and friends.

Rowan has been super sweet to me today. I hope balsa is doing alright. She was in the blue phase snakes get before they shed before I got bed bound. I haven't been down there to keep the humidity in her tank up, or her water fresh.

I just looked at the time. I've been up, but in bed for 3 hours and in exhausted.

Getting a wheelchair

Well I did it. I started a go fund me to get myself a wheelchair. I'm afraid and anxious, but here it is:

gofundme.com/by4pmahm

We'll see how it goes

A "nope" day that started well enough...

I set out a goal this year that I've actually completed! This is my 100th blog post! Thank you to all three of my adoring fans!  I'd still blog without you, but knowing you read makes this whole experience more enjoyable!!!

In honor of my 100th blog I'm going to take you on a tour of my day...

I got up at 10 to feed the cats. I didn't want to get up. My joints hurt, my head hurt, and I had nightmares all night so I didn't sleep well. But I got up and fed my cats.

I then layed on the couch for 3 hours trying to reconcile the pain I was feeling with the need to get things done. I surfed Pinterest for things to motivate me. Mostly it was the chronicly ill cat meme and some feminist stuff. I finally decided I'd need to do something unusual which was use my walker inside. I don't normally do this. If I think there's a chance I'll fall, I normally just don't give up. But I have things to do, damnit! 

I made myself a fact breakfast.

Then I got started on dishes.

I got a load done before my body had had enough.

 So I go upstairs. It takes me  about a minute and a half because I'm in so much pain. It's only then I realize that I have to go pee. Not wanting to go down and back up the stairs again, I pee in the red solo cup and I wash my hands with wet wipes. I keep by my bed for this reason. (It's less expensive and messy than adult diapers I've discovered)

I then take my alive and go to sleep hoping that when I wake up I'll be good enough to take care of some laundry and another load of dishes.

As I curl up in bed waiting for my pills to kick in, I'm going to tell you about pain from my experience.

A good day for me I hover between a 3 and a 4. I feel lucky because there are other people much worse than me. I take pills at around 4-5. Today I'm at a 6. My bad days are at a 7-8. I'm normally at a 8-9 during and after seizures on a bad day.  I don't remember what not being in pain feels like.

And, even after a nap, I have decided I can't be out of bed anymore. I will get up once more to eat, take my pills when Jess gets here to give them to me, then sleep.

This is another "nope" day, and I just didn't realize it,

(Edit: Jess is my hero. Not only is she coming over every day this week to give me pills and check on me, but she's also buying me dinner when I would have been having chips and crackers...

Dinner!

Adapt or die

Joe, my fantastic boyfriend and person who helps me, is out of town for a little over a week. This leaves me alone and responsible for the household.

Yesterday was a bad day, but it gave me some much needed perspective. If I can't take care of myself and my babies, then I need to call someone to take care of me.

Fuck that, I say! 

No. I may not be able to walk to the grocery, or to cvs to get some hair dye, but I can feed myself, clean myself, take care of my babies and be okay.

It's adapt of die. It's a period of exploring the boundaries of my disability at my own pace.

The pace is disapointingly slow, but I'm getting stuff done. Laundry, dishes, litterboxes, resting, hygiene. It all needs to get done.

So I'm having trouble standing to do dishes. What do I do? I go and get the tall stool from the workshop. I'm having trouble taking the stairs to do laundry. I space out the loads throughout the day. Im having trouble getting hair dye I want? I'll dye it with what I have laying around the house. I get exhausted easily? I take frequent breaks. Fuck you, conversion disorder! Fuck you.

Dyed my hair. No idea what color it will be. I say black or dark purple. We'll see tomorrow! I used a pack of cherry jello, some blue dye that never really took to my hair well, and cocoanut oil. If my hair falls out I'll shave it and pretend it was on purpose.

One day...

One day I'm going to stop pretending that I'm okay with not being able to go out and do what I want to do. One day I promise I won't smile through tears and joke around that my heart doesn't ache every time I see someone doing something I can't.

One day I'll be okay with my disability. 

Today is not that day.

I was going to go to the cvs that's less than a mile away today. I spent today in pain and unable to walk much at all, much less make myself more than cereal. 

Joe is having fun in Canada. Jess is with her husband 3 hours away enjoying a oyster festival. Mom got to travel around with my great aunt, see one of my best friends. 

I struggled to make it outside for a much needed cigarette (I've started smoking again, and I have zero fucks to give about it)

I guess I got to travel to Kentucky to see my grandmother and my dads side of the family. I guess it's not all bad, even though I kept my family from doing awesome things making me feel guilty. I hold people back when I do things with them. They pretend I don't...but the lies hurt worse than the truth. The truth is I'm a burden.

I smile. I pretend. I act excited, but really I'm just jealous. My pride is wounded. And my face is rubbed more and more to the fact I'm unable to do the things I used to. I joke to cover up my pain.

It's okay though. One day I'll travel again. I'll have a garden. I'll have animals. I'll teach. One way or another I will work through this.

One day I'll be okay. It's just not going to be today.

Weird fears: microagression/racism

I hear it all the time. The word I don't fully understand, and I don't think I ever truly will. Even as a part of certain minority and discriminated groups, I still don't understand.

Microagression

What is it, really? Sometimes when people scream "Microagression" it seems to me as someone bridging their own ignorance through asking questions instead of making assumptions, or living in a world of tongue biting curiosity. It's not aggression, but a true acknowledgement of their own ignorance.

What makes me question this: three things.

The man who raped me was Asian. (actually he was half Korean, half white, but his features were defiantly Asian.) Ever since him, I have had flashbacks whenever I imagine becoming intimate with an Asian. Even seeing a half naked Asain man is enough to pull a knot into my stomach and tears from my eyes. It's disheartening. It makes me disgusted with myself. I judge people based on their appearance, based on their race, based on something beyond their control. It makes me feel guilty. I have many friends who are Asian, some of whom I could see me having a meaningful relationship with. I just couldn't get beyond my own issues, and honestly, I don't even want to try reopening old wounds. 

I'm bi. And even Asian women will set me off. There was one Asian girl I had a big crush on. I just knew I couldn't be with her because of this guttural reaction. Another one of my guy friends who is half Asian had a crush on me. I knew it. I admired him, but I just couldn't get past the feelings inside.

Is that microagression? is that overt racism? I don't know. I just know it's not going to go away without a lot of time, effort, and tears.

I love afros, kinky-curls, cornrows, weaves, and all aspects of Black hair care. I think it is the most cool and unique thing on the planet. I wish I had the ability to grow an afro, or just crop it short and leave that beautiful black silhouette against my skin. Even better, I would grow dreadlocks without being seen as a dirty hippy. I have so many questions about black hair care. I just was not raised in a culture where black haircare was mentioned. (Exept in Orchestra where I learned from my black classmates and teacher that a Pocahontas weave takes two packs of hair) I keep my mouth shut even when I have burning questions. I want to learn how to do such beautiful braids. But I keep my hands to myself. I don't want to offend anyone with my obsession. (Black skincare, tattoos, and sun care are also things that burn inside me)

I love cultural clothes. Saris, Kimonos, Hanbaks, African tribal patterns. Oh my gosh, I love it all! I wish I could be half as beautiful as my Pakistani friend who wears her Saris so often. The looks like a fucking princess! The bright colors and flowing fabrics make my mouth water. Seeing a woman in a kimono, loving how the obi both matches and is set apart by the fabric of the yukata, wondering how they walk in such strange shoes, and wishing for that experience makes my heart ache. Have you seen a proud black woman with her geometric patterned dress and her hair piled high on her head wrapped in a scarf that is so unique and beautiful. Whenever I see a hijjab on the street I want to stare so badly. It's so beautiful. And it's not just limited to people of color either. The Mennonite ladies in my community always wear the most beautiful dresses. Knowing that they are handmade, and seeing the most subtle beautiful patterns as well as the different style of head coverings makes me ache with desire. But I hold back. Because I don't want to insult the people whose culture it represents.

Yeah. That's what I got. I'm just a pathetic little white girl who wants to question, and immerse myself in a culture without insulting anyone. I don't know if it's considered microagressions or racism, or what, but I'm just putting my fears out there as a method of coming to terms with them. As a method of self discovery.

I don't know, but all this thinking has exhausted me.

Strawberries and clover

Green always brings me memories.

I had a picnic outside in the grass today. I layed out an itchy grey wool blanket that smelled of the cedar chest I keep it in. I lay on my blanket and looked out at the abundance of life teaming in the grass. The shade was cool and I lay there with my memories.

A cigarette burned in my hand that day years ago, but the red smoking cherry was nothing next to the anger in my chest and the tears that clawed down my face.

I just wanted a happy marriage where my husband's love made him itch to touch me. I wanted to be beautiful to him, strong for him. I wanted a life of love and adventure. I wanted a life of wild sex and dances under the stars. I wanted 3 am wine and shared secrets under a blanket near a fire. I wanted someone who held me when I cried and laughed at me when I was silly. I wanted someone who would let me do the same. I wanted the other half of myself.

He took that from me.

No, that's not right, because we never had it. I thought we did, and I probably would have continued in my ignorance till death. 

"I have an addiction to pornography." He told me. He was wrong. His addiction was not to porn, it was to himself. He was addicted to his own wants and desires. He wanted sex, he'd give it to himself. It didn't matter that I begged, bargained and pleaded for it. He wanted escape. He left me to my own devices while he threw himself into his games. He never took me with him. He wanted food. He would make it, and not care that I was hungry. He was addicted to himself.

And I felt betrayed. My knees against the steering wheel I stared out into the grass from the parking lot. A cool breeze came in from the open car windows pulling the smoke from its lazy swirls and lines into nothingness.

My cigarette was half done, and I felt the nicotine dancing in my blood, taking me away from my pain. I imagined that if I had wings I could fly away. My stomach felt heavy, by my back felt light and alive. Like wings were about to break from their hiding place under my skin. I took another drag and wiped away the tears. I imagined thick feathers and strong muscles exploding from my back in a spray of blood. The skin itched there as I dreamed of escape.

It's been years since I was in that parking lot overlooking that field. It's been years since I've seen my ex husband. Still, I worry about him. Does he eat right? Has he found love? Has he found a job he likes? Is he happy with his life? It kills me that I don't know these things. 

I sit in the grass on my grey blanket now and I finally can admit to myself: I'm afraid. I'm afraid to trust people. Im afraid of letting myself be vulnerable. I'm afraid that people will not be there when I need them most.

Wheeling my way downtown...

Well...the wheelchair wasn't a total disaster in that I didn't die...but I almost did 3 times. It turns out the wheelchair tires are not, in fact, made for outdoor use. Traction on them was impossible...so much so I almost skidded into a busy street 3 times. 1 time on a non busy street. Although, really the death part of it doesn't phase me. (Yey disaccociation!!)  it was incredibly frustrating because the wheelchair would not do what I wanted it to. I have to borrow another wheelchair with proper wheels, buy a wheelchair with the proper wheels, or reevaluate how badly I want my independence.

But I got this...

I think...

God, I hope...

My arms are screaming, and I'm sweating. My chest feels light like I just ran 1/2 a mile (which for me is a big deal)I hurt to the point of tears and the tremors are bad. But I did it. I made it almost all by myself. This one guy insisted on helping me after seeing the danger I was in so I let him push me a foot over a ridge. But other than that I did 4 blocks on my own. One of those blocks was uphill.

I feel proud of myself for that at least.

Things I learned:

1)my right arm is significantly weaker than my left arm (go tremors keeping my left arm in shape)

2) wheelchairs are fucking heavy and I'm weak as hell. 

3) we have some amazingly nice people in this town...like woah!

4) I need gloves for wheeling around. My hands are fucking gross!

5) wheelchair users are fucking badasses! I'm not discoraged from using one part time! Just need to figure out some things first.

In success...no one can hear you scream...

You see what I did there...with the title? 

Ahahaha...*sigh*

Today I've been in pain brain and body are screaming at me and I just want to cry. I don't know how to live with the pain and exhaustion...it makes me sick to my stomach.

I didn't get to wheel around the neighborhood.

But I've read lot. 3-4 days I've read 600 pages of young adult fiction. It's about half of what I was capable of in my prime. I still call it a success.

Zen and the art of wheelchair maintenance

Well...this whole time I've been searching for a wheelchair to test out the whole "should I get a wheelchair" thing there's been one in my basement. It's the landlords and from the 50s. I didn't even register it because it's a transport wheelchair with a full back. Something like this:

But I went downstairs (which I don't like doing because the walls aren't very supportive on my climb down) to the basement to see if there was some way to modify it till I could get a real wheelchair. Joe is leaving for 10 days starting this week and I was hoping to test out my independence while he was gone.

I'm glad I did. Turns out that high back was just a add on thing. I took it off in a matter of seconds! It was dirty as sin, old as my parents, but I had joe take it upstairs so I could clean it.

My god, was it dirty...

But after peeling off spider egg sacks and 30-40 years of grunge, I ended up with a solid, wheelchair that works pretty well.

It's not perfect. The leg rests are clunky and won't lock in place. The tires are too smooth to have much traction...but I have a wheelchair to test if buying a new one is worth time. It's also 50 some odd lbs. To give you an idea, even the clunkers on the market now are 30 lbs. the one I want is 18-15 lbs. my arms are going to get so big!

I'm going to be testing it out it big girl world tomorrow. The halls in my house, as well as the doorways are incredibly narrow, so my indoor test run went poorly. That's fine. I don't want the wheelchair for around the house. It's easier just to hold onto walls and fumble around. Plus I like the fact that I can walk unaided (most of the time) in our house.  It's when in outside and I need human support or my walker, and I can feel my legs giving out on me...I want the wheelchair for other things...for freedom outside my house...

So that's exciting.

In other news, my hair has pissed me off enough for me to change it...that was a lie. The truth of the matter is, I sat down to work on feeling emotions, which I've had a hard time doing lately. It worked. It sucked. I remember why I don't like having emotions. All I have are bad ones. The ones that don't help me. Well in response to those bad feelings, I feel the need to overcompensate with a badass change to my hair....and happy colors...So I'm going to do something happy and badass. I don't know what yet, but it's going to happen.

I feel like Holden Caufield from Catcher in Rye whenever I have feelings, all dark, stormy, chaotic, and lonely. I don't like them. We'll see what therapy has in store for me Tuesday. Until then, I've cut the floodgates to those icky things. I've had enough of their hurty hurtness for a while.

So...this wheelchair thing...

I'm getting a little excited over the potential the wheelchair has to expand my freedoms. I'll still have to deal with all the stuff I normally deal with, without freaking out about falling or going into a seizure. I'll be more able to get out of the house, and exercise. My legs can't hold me, but my arms (although still weak and occasionally spazzy) are much more capable. I won't be as afraid to take public transport on my own (and the local transportation department is andicap accessible.) it's really the first hope of freedom and independence I've felt since this fiasco began. Even Jess said she would run with me...I.e. I'll "run" and she'll RUN...one day, even with my misbehaving legs, I might be able to do marithons...I mean if I get over my fatigue.

And think about the job opportunities...as soon as I get the seizures under control, I can get a part time job! And maybe go back to school!

And I've looked into wheelchair homes and homesteading. It's totally something doable!!

Plus...I'm thinking cosplays! At first I thought Oracle. And that was cute, but drab...then I thought a professor x cross-play (I do like being bald) then I became brilliant!

Dr. Fuckin Malcom from Jurrassic Park sitting backwards in the jeep as he runs from the T. rex! Holy shit! How awesome would that be?!?! (And a great place to store purchased merch and booze) plus...leather jacket and sunglasses? Sexy!

Anyway, mom is finding me a wheelchair to test my theory out on...if it works I'll be getting my own for Christmas, asking for donations in lue of Christmas presents.

I'll still be standing the same amount of time as I usually do. I'll just be more active and able to get out of the house! I'm way too excited about a wheelchair. I always thought death before disability, but I can actually live a life worth living if all goes to plan. If ya'll are the praying types...please do so. I want this to be the adaptation that getting me on the road to normalicy.

(Special note: Squee! My aunt Doris is going to be living with my parents now!!!!so excited!!!)

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?