Log in

No account? Create an account

The video below is a very funny, but still serious, look at why everyone in the USA should step up to try and prevent getting utterly hosed by the cable companies. 

If you haven't heard of 'net neutrality' yet, or you have but don't think it's that big a deal, really, you need to watch, because losing it has the potential to make big corporations even more in charge of, well, everything.

Think of how quickly you click to other websites when one is loading too slowly. Then think of how easily this can be utilized AGAINST start up companies, competing companies, political candidates, causes (like, for example, gay rights, or equal pay for women). And it just keeps heading toward being made into law, despite protests to the contrary. We need to have more folks protesting this.

Seriously, please spread the word. This is just so awful. I still can't believe it's gotten as far as it has.
The video: https://www.youtube.com/watch?v=fpbOEoRrHyU 

I also want to mention something to just, well, piss you off as much as I am. The FCC is making it as difficult to leave a comment as they can without being called on it, IMO. Unlike every other website in the freaking universe, if you leave out the www in www.fcc.gov/comments, it won't take you automatically to the comments.

And on their webpage, pressing any of the labeled buttons to ‘file a public comment’ will take you nowhere. Literally. You don't leave the page. It will NOT actually take you to the page to leave comments. Even copying and pasting the actual URL from the page for leaving a public comment will instead shift to a 'search' for public comments, where you have to hunt around to find the link for leaving a comment. Maybe they'll fix this, but I'm sure not counting on it.

So to make it easier:
To submit a comment, when you are on www.fcc.gov/comments page,  you need to go to the table in the middle of the page. Click the link that shows the number of 'filings in the last 30 days,' next to 'Protecting and Promoting the Open Internet.' This should be the one at the top. This will take you to a 'search for filing page.'

When you get on the 'search for filing' page, on the left of the screen, under 'ECFS Main Links' is the link to 'submit a filing.' The Proceeding number for net neutrality (listed at the top), which you'll need to leave a comment, is 14-28.

And please proceed to comment the ever loving F*** out of them. There's less than 50,000 comments right now. I would imagine because they’ve managed to make a lot of us give up by their link BS.

Happy 2014

Well, I just found out that I didn't post something I thought I posted, namely that I would be MIA for all of November, likely December, and wouldn't be peeking my head out until January sometime, in all likelihood. Which sucks, and sorry for that. That's just...I can't even.

I very much want to be optimistic about when I can do things, and try to embrace that enough to believe it and pass that on, because that gets me through my days, which have been, well, kind of shitty lately. The MCAD is worse and I am currently having reactions basically all the time. When I take a shower, when I cook, when I stand in the sun for a few minutes, when I go into town, when I am near people who have used scented products, and yes, now I react when I talk too much, too. I go out of the house to get food and drop the kids off to play at people's houses and every time I do it, it's enough to knock me on my ass for the rest of the day.

And I want to apologize, because my constant state of 'Twisted, you got this, you can do this, just a few days to get over this and you're good to go' is having me be much more optimistic about when I can write, and that's creating expectations that I'm not, in the end, able to meet. Far too often the last couple of years, I can't do the things I'm hoping for as quickly as I'd like, or at all sometimes, and while I'm still trying to be optimistic personally, I'm trying be more realistic publicly.

I'm simply going to have a 'this chapter is happening' post only after it's happened. Because I just don't know anymore. I planned to write two weeks ago on some free time when I felt fine and got annoyed during a phone conversation and that was enough to make me react for hours. I planned to write last week and staying up late to take care of my daughter a few nights made me react to so much for the rest of the week that I could barely finished Rin's HfP on time, let alone write anything else.

I hate that. I hate not being able to figure out what I can do, even in the most general terms. I hate it like you can't believe and I hate that I can't meet my own expectations and let myself down and others down at the same time.

So, deep breath: I don't know when I will have the next chapter up. I am trying, because seriously, I don't DO anything. I almost never leave my house, I almost never see people in person anymore. I cook, I take care of my kids, I react, and I collapse into bed. That's about it, these days. Every once in a while I get to go to a movie theater in the middle of the day when no one is around, if I'm willing to be sick for a few hours afterward. I should have lots of time to write and instead I'm spending most of my free time sleeping and reacting.

Although really, all things considered, it's not horrible; I have food, shelter, enough money to get by on at the moment and some wonderful friends and family. That's more than many have, and I try to remember that whenever I get all pissy and down like this. I may have shit to deal with, but so do a lot of people and I also have a lot of good things in my life, too. I really, truly feel like I can figure this out, and find ways to stay safe. I'm even meditating so getting annoyed at things doesn't make me react as often.

But writing is one of the few things I can still do that I always enjoy. I love it. I will never give it up voluntarily. But I honestly don't know how long it will take for me to write more because I can't tell yet on a given day, or week, or even month sometimes, how things will go.

So...I will not stop writing. But I don't know when I'll have something finished enough to pass on to you. I'll let you know as soon as I've got something up.

Take care, and seriously, have a kick-ass 2014.

If you love Loki...

I came across this the other day, and if you one of those who went to see the recent Loki Movie (that happened to have Thor in it sometimes), you might be interested:

A petition to try and urge Marvel Studios to make an actual Loki movie.

Hope all my fellow Americans had a good Thanksgiving and ya'll have a good holiday coming up. 
...for everyone else, really, this isn't of interest. I swear. Nothing on writing or even the Twisted kiddo. This is just some information for those folks who have expressed interest in learning more about this condition due to their own symptoms or those of friends or family members. Advocacy for the disorder, in other words.

To help with that, I have some resources to share.

And for the one anonymous guy or gal whose best friend has these symptoms? I'd really recommend looking at the the resources in the facebook pages, especially on testing. If your friend is on medication all the time, then yes, it's difficult to test for. But if she is NOT on medication all the time, testing right now is fine, from what I've read (I'd double check, of course). Also, there are some tests that are fine to try while on some meds, so she might still be able to have some preliminary tests, at least. There's information on the sites AND I believe the names of some experts who have said they are willing to consult with any doctors who call them up for information.

So, resources:
The Mastocytosis Society - it has resources for Mast Cell Activation Disorder and Mastocytosis, including information to give to the ER, because they will likely not have people on staff who know what to do with you if you come in having a reaction. They will communicate with doctors and patients both if either requests information about certain situations/tests/etc...

Facebook groups to search for - best source of support I've found, as the other support groups are either not active, or have been having technical problems:
MCAD (Mast Cell Activation Disorder) and Related Conditions -
Good information in the files area and from people in the group, including a lot of technical information.

Mastocytosis and Mast Cell Disorders-Integrative and Holistic Approach  -
Good information in the files and from people in the group. Includes a lot more of the 'cutting edge' of treatment
 that often involves dietary and lifestyle changes rather than medication. Some officially endorsed, some not.

The Mastocytosis Society -
The facebook page for the website. Good source in the files and among people for more technical information required.

There are more, but these three are the most active, with english speakers from around the world engaging there.

Basically, if you or a friend or family member are looking at this and wondering if it might be the answer to your health problems,
here's some information about the people I've met in the community, if it helps.

- Many of them have said at one point or the other: it's like I'm allergic to the whole world!  or they keep getting more and more
allergies seem to crop up, even if they test negative on the allergy tests.

- Many of them react badly to chemicals, either contact or inhaled, or medications. Formaldehyde and sulfites are two of the biggies,
as well as NSAIDS (non-steroirdal anti-inflammatories). Not everyone has this issue, of course, but it's not uncommon.

- Many folks will have this thing where if the skin is scratched, it puffs up along the scratch.
You could scratch a word onto your skin - not breaking the skin - and it would be red and puffed enough to read very soon.

- Frequent exhaustion is common, and many (but not all) have trouble with heat, cold, or both. Some have hives, some don't.
Some itch, some don't. Some have joint and bone pain, some don't. Some have hayfever-like symptoms, some don't. Some have
headaches, some don't.

The some-do/some-don't list goes on for a while. It is quite variable. There are between 60-200 substances released from mast cells.
Doctors don't even actually KNOW how many substances there are. It hasn't been studied enough to figure out. So 60 confirmed, 200 theorized and suspected,
depending on what you read on it. These substances can be released all at once (resulting in anaphylactic shock) or they can be leaked out
a little at a time, resulting in a slow build. The mast cells that release these substances can be systemic, or they can be more concentrated
in certain areas of the body. So what you end up with is symptoms created from the combination of WHERE the mast cells are combined with what
substances are released and how quickly. It means that symptoms from this tend to vary in type and levels of severity,
depending on the person.

This is one reason why so many people have trouble getting diagnosed. The other is that this is a bejanked thing which
doesn't follow the 'rules' as many doctors learned them, and so it can be very hard to find a doctor who even knows how
to test for it, let alone recognizes the symptoms. Most folks I've met with this are in certain areas of the world, near to
a doctor or clinic that tends to specialize in this, and so the doctors around them seem to know enough to at least refer their
patients over there. The others are often like myself, checking the internet and doing a lot of the beginning research themselves,
finding a doctor who at least knows what to test for, if they are lucky (also like me ^_^).

Wishing you all good luck with your health and happiness, and if you ARE suffering from poor health, I hope that you can find
the answers soon and feel BETTER!

EDIT: oh, and for those finding the term MCAS - Mast Cell Activation Syndrome. Basically, MCAD has just been recognized as
a disorder. Previous to that, it was considered a 'set of symptoms,' or a syndrome, in other words. So many of the MCAS information
can apply to MCAD, and the term MCAS is definitely going to be more prevalent in the literature.
Sorry, I know this isn't writing, but I had to share, because the more I find out about this Mast Cell thing, the more freaking depressing it kind of is. Until I realized something this morning.

I have so many humorous t-shirt opportunities with this I don't even know where to start, now. Because I can actually have an allergic reaction to having an intense emotion, or the perfume someone is wearing, or GETTING UP IN THE MORNING TOO FAST (which, not kidding, is an actual possibility I now have to put on my 'allergic reaction trigger journal,' because it keeps freaking happening.).

I may ACTUALLY be Allergic to Mornings. I NEED the t-shirt that says this, because I will wear it and I will be cracking up all freaking day long, OMG.

Seriously, I need so many t-shirts now. Like, 'I need to enhance my calm; I'm allergic to being pissed off.' Or 'I think I'm allergic to your stupidity.' Hey, it could happen! Okay, no, it couldn't, and thank god or I'd be dead from anaphylaxis before I finished listening to the first political speech on the news, seriously. But if you could have an allergic reaction from getting annoyed by someone's stupidity, it's really, really close, right? ^_~

Really, the more I learn about this, the more this disorder seems like it is both Twisted AND Hilarious. That oddly enough makes me feel a little better. :-)

EDIT: okay, even more twisted than I thought, "Talking for extended periods of time" can trigger an ALLERGIC REACTION for some mast cell people (well, symptoms, which is basically an allergic reaction because the mast cells are acting like you have an allergy to something). If this ever happens to me, I am DOOMED. Holy crap. And seriously, I could not make this shit up; you have to see it to believe it. Actually, I'm going to put down where I found it. It's on here, page 2, under the #4 list. http://www.mastocytosis.ca/MSC%20Patient%20Experience.pdf

How is this even a THING?  Jeesh.

EDIT 2: OMG - I can be allergic to doing housework!  HA! OMG, I have said I am housecleaning challenged for YEARS, and now I actually could be. This is the freaking funniest thing EVER. Seriously...oh man, I'm a 13 year old kid, because this is just not going to get old for a LOOONG time. I apologize in advance. There will be 'I'm allergic to...' jokes coming for, like, weeks. Years, even.  Oh man, this is too damn funny.
Sorry, guys, correction for when the husband's for peace chapter is coming out: Not this friday, but next friday.

...but it's going to be a little longer chapter and better for it, yee ha.


So...back in the saddle again.

I have a few moments to breathe right now, and so I am can finally take a few minutes here to talk, and share, and say thank you to everyone over the past few years who has been so supportive and offered help, advice, constructive criticism, all of it.

First, re: yaoifix and Husbands for Peace. The very LAST chapter is coming out this week. The story is completed and done. However, I will be having a couple shorts submitted to yaoifix within the next few months to take a peek at some of the characters, including Brinald and Vane.  This is so hard to complete this story; it always feels so sad to not be writing about these characters anymore!

Second, now that I will not be writing Husbands for Peace, I'm going to be trying to write on everything else, but the whole parthenon of Real Life Crap Gods are still visiting my house, so it will likely still be slow going.

Third - One of the Real Life Crap Gods has finally left my house. I now FINALLY have a diagnosis that explains why I react allergically to freaking everything, all the time, unable to recover and just be around normal, everyday places without getting really sick. Ya'll know I also react to, like, a billion foods and pesticides and all of that, as I've shared before... and had SO many lovely recipes sent to me by some of you that I am forever grateful.

What I could never figure out was WHY I react allergically to the freaking world, and now I know. I have just been diagnosed with something called Mast Cell Activation Disorder. From what I've found out so far, in essence it's like your body's allergic response system has a hair trigger. So I will react allergically to all sorts of things that shouldn't normally set a person off. Not just food and preservatives and chemicals, but even oddball shit like getting tired, or heat, or even catching a cold can make me start having an allergic response. 0.o

The GREAT news is that there are treatments for this that may be able to lessen the symptoms significantly so my life can get back on track. Even if they aren't able to help as much, I can at least start to make a list of my personal 'triggers' that trigger an allergic response, so I can keep as healthy as possible. Because, you know, before this, I was looking at ingested or airborne exposures. I wasn't exactly thinking: oh, it's hot today, I'll stay inside so I don't have an allergic reaction to the HEAT. Seriously, this is SUCH weird shit.

But one reason I'm really HAPPY to find this out is because it gives us a new direction to look at for my daughter's health issues, which are still leaving the doctors baffled. MCAD may or may not be genetic; doctors don't know yet. But they feel like it's definitely worth looking at in her case, so I'm crossing my fingers that we can find some answers.

And I'll just leave you with another moment brought to you by Twisted Son.

My son was sitting on the bed the other day, messing about on a laptop, when he suddenly leaps up off the bed and sprints out of the room like his pants are on fire.
I yell after him: what's wrong?
He yells back: I'm adding drama and action!!

...he was getting the power cord because he got the low battery warning on the laptop. Seriously, that kid cracks my ass up.

I hope you have all had a great summer and are having a great fall, and have a GREAT Halloween, or Dia de Los Muertos, or whatever holiday you have going on in your neck of the woods. I hope that you and your families are healthy and happy and hanging on through this recession.

Take care,

sit rep

I have not yet read a lot of replies to my last post, my apologies. And obviously the expectation of chapter update was a pipe dream and a half. Fate read that last post and decided to instantly pile on a plethora of extra family and health related crap that is pretty much overwhelming everything else, so no time, no sanity, no writing, no nothing right now.

I'll post more when I can.

Oh, and for those who follow Husband's for Peace, Rin already has my last chapters for it so that story will not be delayed by all this.

And....life kicks my ass again

Good news - I have a new computer. It's a very shiny computer, and faster, and a gift, to boot. Yeaaaa.

Bad news - I have a new computer because my old one (which isn't even that OLD!!!) choked in the worst way and took my internet with it for a while. Computers freaking hate me, seriously. However, I DID manage to save my writing and can now finally OPEN the documents (had to get totally new programs for this - I didn't even know that was a possibility, argh).

My apologies for not letting ya'll know sooner - I pretty much had computer hell and almost immediately afterward had arrange to head out to go be with my kids. Totally ignored my computer online life, I cop to it.

Chapter soon, is all I can say now. :-/

oh yeah, and just random status-y things

Just freaking because, I feel the need to share that my life is pretty weird right now, at least compared to what it used to be.

So, most of you know I'm allergic to coffee, including inhaling it, so if there's a lot of coffee around, then I'm not. And pretty much everywhere in the freaking world has coffee these days - even my dentist has to make special accommodations and they don't make coffee in their office on the days I come in. Which is really pretty awesome of them so I special ordered them some really nice coffee as a thank you for when they don't drink it, you know?

I also, turns out, react to sulfites, even breathing them in, which are also in freaking everything. They're often used as preservatives in perfumes, shampoos, scented candles, floor and counter cleansers, and a whole bunch of other stuff that contains scent.

So what this boils down to is that at the moment, unless I can get these allergies to go down, I don't get to go anywhere with crowds or where people drink coffee. So no friends' houses, no dance clubs, conventions, malls, concerts, nada. Doctor's appointments kind of suck a lot, because I'm usually sick for a few days afterward with reacting. When I go to a store, I get in and out in 15 minutes or less, although I CAN go to the movies if I pick times in the middle of the day in the middle of the week at this one little theater that doesn't sell coffee, when almost no one is there.

I love that freaking theater, seriously.

And the reason I'm even saying this is because, well...I may be asking some questions I'm hoping folks might be willing to answer in the next few months if I'm trying to write any scenes ever that have to do with crowds and dance clubs and malls and such. Because I can't freaking remember enough, you know? The smell, what the first thing you get hit with when you walk in, the sounds, what stores are in the malls now, what types of dancing are popular in the clubs now, none of it. So, if anyone might be willing to just talk about what it's like sometime when I'm asking around, I'd really, really appreciate it.

I can find some of this stuff online, like looking up stores, but it's just not the same as actually having a person to talk to who can smell and hear and do all of that.

Although on a positive note? My barbarian and fantasy setting stuff is going to have some EPIC first hand experience coming into play. Because if I'm not cooking or doing stuff with the kids, I am outdoors in our yard or hiking or foraging.

I never in a million years thought I'd be foraging, like actually getting shit to eat and use medicinally and such. Partially because we can use all this stuff with my daughter and it seems to bother her less than grocery store bought food. We've also been talking with these survivalist and old world skills guys about herbs, plants, animals, making fire from two sticks, that sort of thing. The kids love it.

And if you've never done that? Holy god, gotta do that - the talking to old world skills guys, not the fire making, although that's cool too. Because the guys that are working on relearning things like tracking and making fire by hand and such? They are fitter than hell and you seriously have to concentrate so you don't reach out to see if their asses are really as firm as they look. And a lot of them are weirdly attractive all around - I don't know why that is, but at least around here, it's been true.

So for that one, I feel like I can offer a quid pro quo for any help I might be getting on cities and clubs later. Anyone ever have any questions on plants and herbs and such for their stories, you're welcome to ask. Won't swear that I can answer them, because there is SO much knowledge there and I've just got a little sketchy piece of it, but I'll do what I can. :-)

Latest Month

August 2017


RSS Atom
Powered by LiveJournal.com
Designed by chasethestars