QuickHit: Beyond Lupus

I have no long, rambling entry today, but I do have something to share:

The Embody program: Beyond Lupus.

The Boyfriend heard mention of it on a television commercial (I think). You may also hear it referred to as Rethink Lupus. The website contains an initial screening for a clinical trial of a drug called Epratuzumab. Do not dare ask me how to pronounce it, I have no idea!

There is a ten minute or so screening questionnaire on the web site. I like this because we can determine if I should bother going to a participating facility. Lupus/SLE can make that difficult, especially during flares. They also tell you the closest joint you can use to participate. You do want to have things like a med list, date of onset, other illnesses and that sort of thing when you sit down to fill it out.

The trial is a year, and there is the potential for later entries. There may also be a two year extension where everyone gets the drug after the trial, which will be super great if it does what it is supposed to do (bind to a protein on mature, malignant B cells in the immune system and get them to quit making a mess of your life, as I understand it).

It is important, in general, for people to take part in clinical trials so that we can get good drugs into the market and to people that need it. That is not just glurge designed to get you to sign up, it is also true. You do need to be fully informed of risks and benefits, and I intend to be so informed before I sign on for this.

I do not know how the trial will go, if I will actually participate, if I can say anything about it to you here if I do, or anything much yet. But as a chance to get better, or at least help get a drug out there that can help somebody, I feel like I have to try. And it is exciting to be faced with the idea of changing this up and trying something that may make that real difference you and I need.

Self Liking Media

Or: Like Me! Like Me! Like Me! I have opinions. Let me show you this on on Self Liking Media. Enjoy, Gentle Reader. 

I take in a lot of content on the internet. I watch YouTube videos. I have a lot of podcasts I listen to on iTunes. I use (or have used) Spotify, TuneIn, Pandora, Netflix, Vimo, Hulu, Last.fm, Bandcamp, Mixcrate, Stitcher, Blog Talk Radio, and Ustream just to name a handful. I use web site media players, game site videos, social justice media wherever I can find it.

What I am saying is that I have a lot of time where it is difficult to do anything, so I consume the content of others. I have even made a tiny little bit, so I have an idea how hard it is. As I have talked about here before: I have no problem letting folks know I dig their stuff with a plus or a like or five stars or email or whatever. I think it is (the definition of) the least we can do for those folks trying to inform, entertain, and/or educate us. 

The best creators never tell you how to feel about their creations. You should be allowed to experience it on your own and form an un-beleaguered opinion. Like something or not, you should have the ability to form that opinion based on the media itself. You should not be inundated through the piece to form an opinion you do not have yet, or badgered to change a non-glowing opinion at the end. 

Mea culpa: I have been guilty of the "like me!" mess, but I will not anymore. You get to decide what you like.

But if you put your stuff out there on a system that has an opinion system, then you have voluntarily agreed to letting people voice their own opinion on that system. I respectfully address that you get over it, or get off of those systems. YouTubers and Facebookers and iTuners and whatever: quit telling me to give you a good rating and spend that energy into your project and make it even better.

Now, contrary to what you might think, I am not dogging everyone that made something on the Internet ever and then asked you to dig it. There is a one word cure to this: if. Well, you know, and variations of it:

• If you liked this video, please remember to hit the like button. 
• Hit the subscribe button if you like it so much you want more.
• Did you dig this G+ post? Let me know with that +1 button, okay?
• We work a lot on this podcast. Want us to keep it up? Five stars will let us know! If you hear an issue, please give us a heads up!
• We are able to get help with equipment and stuff based on our like counts. So please help us out with a good review - you listened to the whole thing, so you like us, right? 
• Enjoy our skits? Let us know! There is a donate button, too!
• Please use our comment section to give us accolades, guidance  opinion, whatever comes to your head for us. Well, almost whatever - behave! Check out our posting rules for questions.

For all that is good in this world, quit telling us to like your stuff and make it likable instead, okay? Okay. Thanks. Look, the creators I am addressing are giving out mostly free content: we are predisposed to like you. "Yea, free stuff!" said the Internet. Then we spend time on you, further prepping us to like you. People do not like to be wrong, so we are going to want to like you the longer we spend time on your content. 

I know, there are trolls, but they are actually a tiny fraction of people on the Internet. They are just the loudest because it is easier to shit on something than to hold it up. Sadistic lulz are no longer witty retorts, now they are usually just the flatulence of the bored. 

On perks: if you give a perk to the best opinions, good for you. But I think it does a disservice to you and your fans. How can you know what they really think if you have some raffle prize for shining reviews. A lot of the folks that hound consumers about it never give a breath to telling them what you actually think, they just want the like/plus/stars. So if your content has a problem like a faulty/misplaced light or bad levels or misinformation, who is going to tell you? It should be your fans, but you have them giving prize-eligible reviews instead. I think that can cause content creators more harm than good. You know your content's needs better than I, so take that as you will.

Down with the phenomena of Self Liking Media! Remember, you can show me some love below if you like what I do:

BadCripple: The ACA and You

Dear Folks,

First: take a deep breath. We have some things to talk about. You may have to Google some stuff, you may have to visit some sites more than once. But you are going to be okay.

Since I am chronically ill and both sick and flaring, you will have to find most links on your own. Let me break down this part of my life for you: my phone thinks the damn hospital is my place of employment, okay? There is no setting to say I am just disabled. Heh.

Thanks to the ACA, you are going to be far more okay than you have ever been, if you were not independently wealthy. If you are independently wealthy: shut your damn dirty mouth about the ACA. Your fucking crocodile tears are part of the problem. Go polish your Bentley, the grown-ups have the floor. 

I am looking at you, Marco Rubio - quit fucking up your people in favor of some more money, you jackass. You were never going to be President anyway. Go write some useless memoir. I will read it when it gets to used book store bargain bundles.

Well, most of you are going to be okay. If you are poor but working in a state that did not accept the federal money to expand Medicaid you may still be fucked for a while. As I understand it, though, the Administration is going to try to find other ways to get you covered (you know, when they quit putting out the flaming Tea Party doggie bags on the White House lawn). That is the fault of your state, though, you got it? Good, because you have enough flaming shitballs to juggle just to get through the day. All I ask is that you vote, and remember this when you vote.

Okay, the rest of you: did you take a breath? Good, good. Take another one. For the first time ever, you are going to have reliable access to affordable healthcare. Yeah, really! You will have it no matter what happens to your job, even if you move, even if you or a family member comes down with a multi-million-dollar illness. No shit! Even if you get poor, unless you were in a red state that turned away the money to help you then. Think about that when you vote.

I know, I know, the web site is hard to use right now. But it is not just about the web site, and the web site is going to get fixed. You have until, like, January to get situated. That information is everywhere. You are going to be okay.

About the goddamn web page: this is not a simple thing. This is not some script kiddie's About.me page. This is a complicated thing, connecting to state and federal government, the IRS, dozens of health care insurers... You know how hard it is just to get some suits to decide where to go for lunch, let alone coordinate that kind of cooperation. Although other countries have universal coverage: this has never been done before. 

So make up your own mind, but educate yourself first, please. We have enough business people, "elected" leaders, and party dunces hollering straight out of their asses. You take care of yourself, and if you still cannot get things going for you and your family, take a deep, deep breath. You have a while.

My Life, Bottled

Do you keep flowers from special occasions? I do: funerals, weddings, Mother's Day, birthdays - if someone gives me  flowers, I keep them! I know flowers are kind of frivolous gifts, but I really like having fresh life and color at my desk or table. 

I counter the fleeting nature of cut flowers by drying them and keeping the flower petals. I kept them in pretty gauze bags. I have used some for sachets for the Minions. 

I started running out of places to keep these dry flower petals.

I collect little glass bottles. The kinds you see in craft stores, or in front of windows at restaurants. I think the are pretty. I have some that are colored cut class, some that are clear. I have skinny and fat ones, tall and short, simple and shaped.

Eventually I started  keeping the petals in my glass jars. recently I realized I was kind of canning or jarring my life. The bottles hold flowers from my grandmother's funeral last month, from get well flowers from hospital stays, from some sultry Valentine's days...

I thought that it was neat, and wanted to share it with you. I have more meaty posts in the works, but once in a while I like to post something light and fun.

I think I will give them to my Minions, Menfolk, and my friends when I die. Maybe mix them with my ashes if I get cremated. Maybe scent them my favorite perfumes or leave it to my family to scent bags/bottles of me with their favorite scent of mine... Oh, I could go to Demeter and get library book or leather or whatever folks associate with me... 

My life, in bottles:

Shelf of bottles filled with flower petals, two empty ones up front shaped like a male and a female torso.

A photo from further back, showing the book shelves filled with latest books, knick knacks, and on top - the life bottles.

Bad Cripple: Miley "Critics" Getting It Wrong

So, Miley Cyrus is getting support and defense from some damn odd corners over the "tiny strokes" joke.  The people that have experienced TIA/micro-strokes and their allies are getting the "you humorless fucks" bullshit from such people. I heard or read four just yesterday, before I even engaged with this story so this mean ignorance is not isolated enough to blame just one or a few jerks with links. 

Well, when a micro blood clot or dozen takes away your children's name or you ability to do math or tie a shoe - you can come and tell me how fucking hilarious it was for you. When your spouse wakes up and gives you a blank stare or screams because they do not remember you, tell me how fucking hilarious you both found it. When it is followed by massive stroke, you can tell me how it is to laugh while drooling into a cup.
Oh, and for the people whining that the disabled should give up their rights to peace and privacy and "educate" the public, the UK Stroke Association did that in their letter. Educate your own damn selves, quit telling people that are having enough trouble with strokes and all to Google That for You.

I am sticking with the "not funny" camp that neuro-atypical people get shoved into when no one wants to validate our experiences. This is not the only incident of ableism of hers going on right fucking now. There are a lot of folks trying to let her know, like Sinead O'Connor, that this is unacceptable, but she keeps doing it anyway with the minimum, petulant apologies. Mainly because a bunch of heartless fucks that think strokes will never happen to them are backing this bullshit. This is not killing Hannah Montana, this is socially irresponsible fucking garbage.

If you want to insist this kind of oppressive bullshit is funny: fuck you. It is fucking brain damage you petulant pusillanimous fuckwits. It takes away random parts of your life, some you will never get back and can signal more massive strokes. I am almost ready to say that I am happy to hit folks with a baseball bat until you get some yourself so you can know how not fucking funny it is. Sympathy via the application of sudden, satisfying force.