So much!

So much has happened since my last post. I don't know where to begin.

I went for my wheelchair fitting. It was fantastic! Val took me and the man who's helping me out has been fantastic! I'm getting a Tilight TRA ultralight. 

I tried out a rigid chair to get measured too. 

And afterwords we went out for sushi!!!

It was almost too pretty to eat!

I ended up getting the fatty tuna of oran high school host club legend. It was pretty tasty. Not my favorite, but tasty all the same. My favorites are still eel, and salmon. 

Anyway, val also invited me to Disney World! She's doing a half marathon with her cousin. I'd participate too, but it's $200 and they're full, and I'm not going to be up to wheeling myself for a half marathon so close to me getting my wheelchair. However, Val is taking me on a 5k in November or December. Which I'm stoked about. Wheelchair racing is actually a thing I'm looking forward too. Just because my legs don't work right doesn't mean I can't zoom!

But I'm super excited about Disney too. I'm going out a few days before Val and her cousin to spend some time with family. Also, I'm going to do Epcot on my own. Completely solo to celebrate my independence! I'm also doing my flights solo. I think it will be my first solo vacation ever...I mean I'll be staying with family at night, and most of the days I'll be chilling with people I know, but I'll have a whole day to myself, and the flight as well. All from the seat of my chair...

I've also been researching Aqua therapy. When I get my chair, I'll be wheeling myself a mile down the street to go to the pool. Once there, ill be doing hair and balance therapies as well as...you know...regular lap swimming drills. I think I'm going to bike lock my wheelchair in the locker room. But I have about 15 exercises on the docket for Aqua therapy and a buttload more for regular swimming. 

Come January I'm going to be starting taking a class a semester at the community college to get an asl certificate. If my aphasia doesn't let up, I can still be a teacher. I'll just do it at the blind and deaf school nearby.

In the fall of 2016 I'll be starting up classes back at the old college. I only have 2 semesters left. I'm gonna do it!

I don't think I'll start working until after I get my degree. I'll probably check to see if the elementary school down the street is hiring for anything (preferably kindergarten or maybe 1st grade, office work, or subbing) until I can drive. 

139 days until I can drive barring any more seizures. If I can ever drive again at all.

I talked to some of my larp friends who are also gms. They've said I can attend a few times a year as a non combatant at a steep discount. So I might me attending that larp 3ish times a year.

There's a Harry Potter type larp next year. I think it's a one shot, but I've been talking to that game master and I'm excited about going.

I might even get back into my original larp by chilling in the box shack and helping people get ready. I'm going out to lunch with the game master today so we will see.

So larping, swimming, school, and running are hobby a that I'm excited for. After I get better stamina I'm going to be talking with my friend who has a martial arts studio and see if I can come out and try out some wheelchair martial arts. I might even be able to get another friend who enjoys martial arts to drive me, and help us figure things out together!

I feel so excited about the world opening up to me now that I've accepted that this disability isn't going away any time soon, if at all.

Speaking of the disability, last night was aweful. I hit an 8 on the pain scale. I mean, it's happened before, but normally Joe is there to take care of me. He gets that it's just a little pain, and there are just a few tears. It will only last a day or two before I go back to my comfortable 3-4.

But mom was worried...she balked at how many pain pills I took. I was so bad I had to have her change me for bed. I think that shook her the most. I was crying and whimpering with every movement.

I still hurt today, but I'm at a 5-6 today. I'll take some pain pills before lunch so I can enjoy it. I'll power through it, because I get to see an old friend and her amazing daughter for the first time in several years!

In the meantime, I've eaten all my morning vitamins, and now I'm going back to sleep till lunch time.

Shocking developments 9-27-15

Yesterday I electrocuted myself. Literally. I was fiddling with an outlet behind the washer machine to plug in my blow dryer. I'm insulating the basement windows in preparation for winter.

Anyway, we have to use a 3prong to 2prong converter because our house was invented before three prong outlets. As I was unplugging the washing machine the converter broke leaving two live wires out in the open. In exasperation (and very carefully) I tried to remove the damaged box. I'm twitchy and I must have twitched to touching the wires.

That was fun.

Not.

But after a seizure, and probably an hour, I got pissed off and put on the rubber yellow gloves and got a plastic stic to jimmy the rest of the converter off. I was successful!

Today I thought I broke the washer, but I must have twitched the toggle switch into the off position. I flipped it back and bam! I did a load of laundry.

I also did 3 loads of dishes and made myself dinner.

I'm proud of myself.

I have a sticky note on my wall:

I had apparently decided a while ago to only chase after things that make me happy and forgotten. No where on there is money or business. As a matter of fact, I specifically say one on one time, not group time. Although I enjoy parties (as long as they're light) they don't make me happy. 

I should add larping on there...

Anyway, I'm going to go to sleep because I am dumb and scheduled therapy at 9:15 tomorrow...

And apparently I have to go a few days or longer without my antidepressant because something about refills and doctors and I hate this condition I wish it would up and die.

I'm drunk from champagne by Jess. 

Listen to Welcome to Nightvale.

Goodnight.

Fight or flight? Choose fight because lipstick! 10-2-2015

Today is actually a really good day, despite the fact nothing productive happened.

I treated myself to being fancy! My friend Tini sent me a lipstick so I did my makeup! I feel beautiful and badass!

I also figured out how to wrap my ancle so the dystonia no longer hurts it, now all I need is the knee brace! Then I'll have the wheelchair, and I'll be physically able to take on the world! All that's left after that is managing my seizures, chronic pain, and fatigue. Everything is falling into place!

I wrapped my ancle in an ace bandage, put in the brace from when I sprained my ancle, and secured that with another ace bandage! My ancle hasn't felt this good in forever! Sweet Jesus it feels amazing! It's even helping a little with my knee, and the stairs were easier as well!

Aside from the threat of debt trying to eat my half decent credit score. (Because medical bills hurt a lot and everyone wants my money.) I'm feeling pretty damn good today! 

In it to win it

So today I sat down to do 1 project upstairs...okay 3 projects. I posted some pictures I printed of my dream house and taped them up under my map of places I want to visit. And then I wanted to hang some curtains so I can walk upstairs naked again without bothering the neighbors. (To clarify, I've been walking around naked...around Windows with no curtains)

I spent the whole day cleaning upstairs...

And being naughty. So normally I can't watch tv. It causes seizures, or a really bad state. But I decided to watch the first three episodes of Scream Queens because they're free on Hulu.

And then I watched ssssoooooo many videos off Steven Universe off YouTube! I want to see a full episode, but I settled for clips.

I'm in pretty rough state right now. I might have had a seizure earlier today. I don't remember. I "woke up" in bed though, so that's a good thing. Plus I was only missing 45ish minutes so I'll call that a win.

I want to see the "Crimson Peak" movie that's out, though I know I really can't...and I've been during to see "Inside Out" and the latest season of game of thrones...

But Joe took us out to get some cheep pizza,which is great cuz I had a craving.

A fly flew into my face while we waited for the pizza and set me off. Also I can't speak English today...well at some point in the day I lost the ability. I'm not sure when.

Bam! Burst of energy!

Fatigue and pain weren't bad at all today, and I got a lot done because of it! (Though I'll probably regret it) 

I started cleaning out the basement. You know, getting rid of old costume making supplies we don't use anymore because Legends last event is this month.

I also took the next step in insulating the basement in preparation for winter!

But I'm now exhausted, and my symptoms are coming back in force. So I'm off to sleep.

New medical devices

In preparation for my new walker, I purchased 2 braces for my dystonia (rhythmic and painful contractions of muscles in my legs).

Both these braces are heavy duty and should provide the support I need. I spent under $80 bucks too which means more money for my wheelchair. XD

In other news I hung a plant in the upstairs. This is fantastic because I did it all on my own.

I'm going to curl under the covers now. it's very cold in the house today as we haven't turned on the heater yet, and probably wont for a while yet. I haven't had the AC on for almost a month now either. Saving money, and making my boyfriend comfortable is awesome. ^_^

Multi pass!

ISo, I have a weird aphasia thing where I try to talk but speak gibberish. It hit again so I decided to record it because it's entertaining. Also, joes responses are entertaining. I was trying to tell him I was recording for my blog, but in the end I rolled with it.

http://youtu.be/nq_9iI-gL1o

Honestly, if I could give up all my other symptoms and only have this one full time...I would, in a heartbeat.

Also, a picture of my evening pills:

1 clonzepam

1 lexipro

1 anti nightmare pill (forgot it's name)

3 vilarian vitamins

2 simply sleep

1 alieve.

And breakfast pulls: 

2 vitimin d

2 fish oil

1 b vitimin

1 ginkgo

2 some other herbal supplement I forgot what it is but its for energy.

1 glucosamine 

And 1 vitimin c

2 of this "vegetable supplement" I got from amway.

I'll be adding a multivitamin in there soon. Like when I have money for more stuff to put in my mouth.

And, because it's true, the chronic illness cat meme: