What Do I Do? What Do I Want?

Recently I have been thinking about my blog here. What do I really want out of my blog, what do I want to put into it, and what on earth do I think I will get out of it? Please note: this is not some sort of blogging goodbye, I am analyzing what I am doing on a number of fronts.

One of the first side effects I noticed when I became (or finally realized I was) disabled was a serious disconnect from the world around me. I had not opted out of participating in the world, but very few things were aimed at including or even caring about me and this new-to-me group I found myself in! Unless I wanted a Jazzy or a Rascal I was pretty much left out. I already experienced this as a woman, as a poor person, as a poly person, and a bisexual (unless you are a bi woman having sex with other "bi" women for the purpose of turning on straight men, being bisexual is often considered indecision or greed rather than an actual sexual orientation). In most of life's genres I am relegated to a background player, or just ignored. I do have relative privilege and I try to live my life with that understanding.

My response to being discarded and feeling disconnected was to become hyper-connected. I went from not caring about most television programming to having the news on almost all the time. I started spending more of my time on line following news, pop culture, and finally connecting my interest in politics and social justice to the modern Internet. I found that if I saw a news story a couple of times I had a much better chance of retaining it and being able to discuss it with someone else.

As the scope of the issues and problems regarding USian society and culture about disability became clearer to me and I started to understand that it was right up there with other great societal poisons, I began to understand that I wanted to be part of the solution. I wanted (and still want) to take some of the things that happened to me along the way and use them to help other people. I want to take the horrible things that happened and give them to you so you can either avoid them yourself or better understand someone else in your life that has experienced similar things. So here I am.

Two Words

The following is a flare rant I wrote about a month ago, and then promptly forgot about because I was flaring. So here you go, and at the bottom I ask you for your flare advice.

Fucking. Flare.
Seriously. Thursday I missed my physical therapy, and that makes me feel about two inches tall. This is because it is low/no income and that means that someone else in my position or worse could have used that slot if I had been able to cancel earlier. This is a traveling teaching group, so when you miss an appointment not only could someone else have used the slot, but there are P/T students there that need to learn that are also going without what they need.
On the up side, they used the hour to learn more about lupus, fibro, and my upcoming wrist surgery and how all those things can impact physical therapy, not just for me but in general. Which is awesome! I have actually apologized to the students for being so complicated, but the lead P/T said to never do that, that patients in real life are always complicated.

I am going to talk to my physical therapist and find out more about how one can access low/no income therapy like this, because I think it is very important.
Hate. Flares. My physical ability goes out the window. I have a wicked Flowers for Algernon thing going on while I flare. It touches everything I touch, and I resent the hell out of it. Lately, though, I am trying to lean into experiences and really be there and understand, but flares just suck so god damn hard.
This seems to be a mini flare, which hopefully means it will only last about a week or so. So, umm, hurrah?

When a flare happens, I try to cut down on anything that the flare could ruin. Say, if I have an appointment or need to make an important phone call I will do what I can to put it off until the flare is gone because my cognitive ability goes right out the window. Delicate repairs or mending are definitely off my To Do lists. Sex can be a downright mess if it is the fibro that is acting up. I try to keep my focus narrow and easy to cut down on both outward mistakes and inward strife.
What do you do when you flare? What do you put off, what do you muddle through?

Seeing is Expensive OR OneSight

Wearing eyeglasses can be a tough gig. A lot of insurance coverage either does not cover visual, or barely covers it at all. Of course, while you can spend an absolute ton of money on a pair of eyeglasses, even cheap ones are prohibitively expensive if you are poor. In Indiana, it costs anywhere from $100-$200 to get an exam, lenses, and frames.

Going without glasses causes  obvious problems. Wearing old glasses can wreck havoc with your health and comfort if your eyes have changed significantly since you wore them. This can cause migraine like symptoms in some. In general I have never known a person that needed to do this that did not have headaches of varying degrees that did not relent while they wore their old glasses. That was a messed up sentence, but I trust that you understand what I wrote there.

The cost and logistics (multiple trips, hours that are one's working hours,  gas or public transit twice) along the the shitty "coverage" if you can even get that; all these things make glasses really hard to get once you live at a certain income (or lack of it) bracket. Groups, charities, and other organizations that help people get glasses do a tremendous service. I have written here before about how you can help by donating your own old or extra pairs to help the cause.

A few weeks ago, I went with the Boyfriend to a local Lenscrafters, as he needed new glasses. While we were there I picked up a brochure for OneSight, an organization that brings eyeglasses to those in need. Unfortunately, you cannot just go in with whatever proof you have for your lack of income, you need to be referred. But the program looks great, and works both internationally and domestically (US). They are also one of the programs that will take your old glasses, too!

I think OneSight does good work, and I wanted to pass the word along. Do you know of other groups and/or efforts? Please share them below!

ProPatient: Carpal Tunnel Surgery

Monday I had open carpal tunnel surgery. I had a hard time finding personal resources on what to do, what to expect, and how to plan before and after. So here is my experience, along with whatever advice I have for other folks going through the same thing. Be warned, I am an asshole, so for folks finding this in a search, this material will reflect me.

Read more after the jump. This is a long one!

Evil Hand Issues!

Monday was the day. I went in for open carpal tunnel surgery. I was in a panic. Not about the surgery, that was pretty routine. The panic comes from the idea of not being able to use my dominant hand for weeks.

I read. I keep house, as I can. I write. I game. I sew. I bead/make jewelry. I fuck. Everything I do needs that hand.

I have never had a cast, so this is another reason this is going to be a nightmare. I am sure I will bang it into everything, and I hate the idea of not being able to use my dominant hand. Turns out, it is a small, soft wrap and not that bad at all. It does sometimes itch like fire inside, though. Arg!

I am now back at my desk and am piecing together an article about the whole surgery et al, since I only found a few good resources. I am recovering well, and hope to avoid the ever present threat of flare while I heal.

And I need to be spiffy for a friend's wedding this weekend!

Get Out and Vote!

I do not need to tell you that I am adamant about getting out the vote. Even if I do not agree with how you will vote, I think you should get out there and exercise your Constitutional right and obligation to vote.

Check out your state's voting rules and regulations at your Secretary of State's web page. Indiana voters can go here.  Here is some more Indiana information.

You can find information about voting with disabilities there, and you can find more voting with disability information here.

Know your polling place, and know your ID rules.

Are the rights of LGBT citizens on your ballot? Find out!

Check out Actually... if you need more motivation to vote. Here are some motivational voting posters that kick ass.

Here is the Planned Parenthood voting guide. Here is the ACLU's guide. Bold Progressives/MoveOn put together a guide too. You can find your polling place here.

If you have trouble voting, then immediately contact Election Protection, either via their web page or by calling their number: 1.866.OUR.VOTE. The ACLU Voter Protection Hotline is: 877.523.2792.

Remember that people have fought and died so that you can cast a ballot: DO IT! I am in a flare, but I had my husband bundle me up so I got to my polling place, which will likely still be only barely was actually handicapped accessible, and cast my damn ballot, you can too!

Planned Parenthood of Indiana

Planned Parenthood of Indiana does awesome things. When I was much younger, I had a cancer scare, and I had no other way to find out what was going on except through the low cost services of PPI. Fortunately, I had nothing to worry about in the end.

I have already been teaching my daughters about Planned Parenthood, safer sex, and both societal attitudes about sex and (versus) real life sex. I am glad I started early, as soon as they started asking, because even then it is a raging battle to make sure that they value themselves both as human beings in general and as free sexual agents. (No, I do not say it like that, but you get it, and they are starting to get it.)

Recently, PP has been working on political awareness, because a lot of politicians seem to want a government small enough to fit into every vagina in the land. The #YesWePlan effort is great, and here is my pic:

Here are some places you can find Planned Parenthood:
Facebook
Twitter
Web
Planned Parenthood Action Center

Because there is some awful up there in the links, I offer a relevant palate cleanser:

And I say:

GO VOTE NOVEMBER 6TH!

Gimpy Gamer: The First Three

So I nearly jumped for joy when I read this: Halo 4 Creators Introduce Lifetime Ban for Sexism. Wow, that is a hell of a step in the right direction! As a lady gamer raising girl gamers, this is such welcome news that I cannot even tell you. Here is the Gamespot article.

One of the problems with bans like this is that in order to make it work, often other paying gamers have to remove themselves from the game in order to file a report/complaint about a gamer ruining everyone's good time with sexism, racism, homophobia, or their social ill of choice. 

It is an unfair expectation of someone paying to use a service to have to take some of that paid time to essentially work for the service instead. But this is the world we live in now. Since it is silly to expect any service like Playstation or XBox Live to be able to monitor every gamer in every game at every moment of every day, we have to do our part.

I want to see a movement where those of us paying to use a service like XBox Live vow to do our part. I want us to promise that we will take the first fifteen minutes of online game time to report it when trolls are being trolls. Or, say, your first three Matchmaking games of a night - promise that you will do your part and allow your games to be interrupted while you report someone making sexist rape "jokes" in your Matchmaking. Or promise to report the first three trolls of your night.

Once your three games, three trolls, or first fifteen minutes are done, then you can sit back and enjoy your flow, unless someone is so bad, so inhuman to their fellow players that you simply have to report them no matter how good your gaming flow has been up to that point.

Gaming flow is important to gamers: once you settle in, set the real world behind you and get your head in the space of your game of choice, you want to stay there if you can. That is reasonable. I argue that if you have some homophobic bigot ranting and raving through your Big Team Battle, then your flow has already been interrupted, and taking a moment to report the troll can help keep that particular troll from messing with not only your flow, but the flow of everyone else that plays too!

So please stand with me in taking The First Three pledge. Let us make multiplayer a better place for everyone, and show that we actually care about the community we play and live in! I know that after the election is over, I will be as immersed as I can be in Halo 4, both campaign and then maybe even matchmaking with strangers (usually I only play with folks I know). I will take the First Three pledge!

Every Day is Hallow... Aww, You Get It!

I love Halloween. Every day is Halloween! I have been a horror hound since I can remember. I fell asleep at the drive-in during An American Werewolf in London, and then had nightmares about the undead Nazi attack. 

(I know it is All Saints Day, but I was pretty sure that if I made two posts in one day that the fabric of my universe would fall apart... So enjoy this with your hangover. Or not, you be you.)

The annual ritual of walking to the VHS rental place for the best of what it had to offer around this time of year was always awesome. This was back when a single, new-ish release would run you about $80, so everybody rented. Only the Star Trek movies were important enough at my place to actually own. Everything else around the house was from the brand new bargain bins of tapes, where we could find the occasional old sci-fi treasure or a Roger Corman classic. The Terror with Boris Karloff and Jack Nicholson - we had it. We also had Nicholson in Little Shop of Horrors, he was the dentist's "masochistic" patient. It was a bit part, but I am pretty sure the reason the movie lived on...

I remember the first time I watched Michael Jackson's Thriller, I watched it as a John Landis short, because there were almost no black people on MTV until then, 1983. The Landis/Jackson dispute over rights was finally settled this last August. Thriller is one of those amazing mixings of genres that elevates both to something new and different. Without Thriller, there is no Dragula. 

Wave hello to the grandfather of horror there at the end, Vincent Price!

For years, our mom made us dress as "hobos" (I know, I know) because our great-grandmother liked the costume. The Minions go-to costumes are, of course, vampires, because there is no shortage of white makeup and cheap velvet around here. 

You know what, I can come up with maybe twenty or so decent costumes that include, involve or even mimic disability. Sigh.