Autumnal Equinox or, "Mountain, Move!"

Autumn is almost here. And with it, comes projects and watching for brightly colored autumn leaves. And planning.

The November Projects will be up and running, perhaps a little early. I have an Advent wreath to work up for Mom. These are pretty basic. It's meant to count off the weeks of waiting for Emmanuel. God is with us, he's on his way. Pretty, but still simple. Dark greenery, simple dark purple bows, and one large golden ribbon- and maybe a random, brightly colored object, like a little angel playing a lute. I'm also thinking of using that time to buy an adult-sized Christmas tree.

The October Projects?
The The Purple Pumpkin Project will be going. And I'm going to play a bit.
I'm going to actually do it and add a few purple highlights to my hair to match- and for advertising purposes. Pics later. (I could go with a bright, obviously fake and cheap Hot Topic wig, but I've been told about Hair Chalk and feel like playing. Subtly, but having a little fun.

I've got things to sort and things to correct. It's all well and good to be a huge softie, and I can be. There also come times to learn to say to that mountain standing in your way, "MOVE!" and see it move. May be seeing some more help from a neurosurgeon I thought I left for dead. *Fingers crossed*. But for the most part, it's correcting the iffy stuff. And preventing my yearly flare up with my kidneys. The piss poor (Pun not intended, but being left in anyway)  appetite signaling that it's time to fight has begun. Must change that, I have recipes to play with and promises to keep. Not liking Wegmans cannot keep me from doing that... or my health. A need to wander, that's always with me, and I'm going to obey it.

And hell, I'm going to kick ass. If I can't say something, I will show it!

I say to you, Mountain, that you will move!

Downswing of ASL "No". 

*Also, I've got mayhem to wreak.

Thoughts on Vagueness and Comorbidity

http://youtu.be/_71kacbaXVo

Frustration with announcements that proclaim: "We know that we know NOTHING. 

Leave A Better World, or Leave No Trace

When life makes me insane, or I need to get out excess energy, a wandering I go. I love the water, and the plants and animals. I do my best to leave no traces of myself, and take nothing but photos. 

I pray, in a small part, that I may leave improvements here, or no footprints where they're not needed. 

One Would Ask That We Stop Using The Royal We and Them. Please

This MUST sound odd. It's possible to like people but get bogged down easily. It's also possible to find that, when someone finds themselves in a group, they might be polite about things... My closest friends may know it's been about six months of fighting for better medical help, grief for a family member, yeah I don't recover fast, trying to sort out many different things, and generally, get me under control while I search for ways to help myself and keep my mind from tick ticking loudly while researching VNS, etc. and trying to make a dent in the antiquated treatments. They made me sicker.

Do NOT pull me aside like I am a recalcitrant five year old, shout at me, and make accusations and assumptions. Don't mock me because I'm pale... without sunblock, the sun does worse than burn me and my eyes are sensitive to light.
Do not speak for collective groups... the royal we makes YOU sound like an asshole, and WE would hope that one would learn some manners. Ew. Ok. Now. Asking politely might gain a general, polite answer. I want fresh air. I like people. I don't like loud noises and people talking over each other loudly and making nasty comments,apparently for fun.I got a new haircut. This is obvious. I like it. I'm happy. Let it go, it just strikes me the same as the guy who asked me if I could permanently straighten it. Don't like it? It's my head! Judging me and saying do this, and blah blah, and why like that, and everybody does this, especially negative things... No... that's not true. Also, my life is mine to lead as I choose. If I am quiet, I am quiet. If I am happy,let me be so.

I Want To Believe, or, Not My Circus, Not My Monkeys

I want to believe.
I want to believe that:
-Every hooker on the street has a heart of purest gold and will suddenly burst into Memories from Cats with just the right knowing look.
-Every homeless person is really an angel in disguise, even the one drenched in his wee and shouting epithets at you.

But: the world is harsher and colder, and while I detest judging people harshly, I can't afford to ignore my gut.
There are freaky, nasty people. Sometimes, they get close to families, and tend to pick on one person with both gossip and lascivious remarks that erode trust that might already be hard won and shaky.

Now:
-Responding to anything a person is happy about with negativity and gossip and phrases designed to dig at insecurity... this is not normal, or shouldn't be.
-Asking about people I'm not involved in any arguments with and speculation on if I see them in Mass. Subsection 1: Not my circus, not my monkeys. Subsection 2:if you're in church, it's not human things and battles you should focus on. There are bigger concerns in play at church, I'd think.

Let me reiterate because while asking me to go back to doctors who have hurt me, stating you'd talk for me, after years spent wearing me down and getting me to think something was wrong with the way I spoke and carried myself, and doing just that, to my detriment, you want to keep it up, want me to hurt in order to heal?

I can speak. I have not spent time healing and fighting to depend on abusive and nasty people for a basic human right.

Wearing me down and telling me "You can't" to anything, going after me ad nauseam, and treating me as ears for gossip and hurtful things has to quit. As for nasty personal friends: Not my monkeys. I respect myself too much to let nasty old men with lust and more around me in return for "help".

Back in the Habit Again

Habits. For survival reasons, I packed on a few odd ones. At the moment, I'm figuring out which don't suit my purpose anymore and which will let me survive better,faster, leaner,
... we can rebuild me, we have the technology!

Having the capability to wax sarcastic is good. Without it, I'd be driven positively mad! But it's nice to have actual conversations where, bearing in mind my usual bugbears, ambient noise, technology unknown, my pointy elf/Spock ear hitting a screen in the wrong place, funky volume control on speaker... I can be understood and can be clear as a bell and wax sarcastic without losing my lede. Not being frightened and squeaking like a little girl church mouse,  and perhaps setting up everybody for frustration is best. I know I generally have a clear directive: for speeches, index cards and figuring out the "Smile while you talk" gambit while not looking like a freak. Here and there I break past my family's habit of talking for me, which they do in good intention, but leaves me staring at people wide eyed or attempting to steer them my way. Trying to be polite in turn has screwed me up. I know better than to try anything with voice recognition... I once had to ask a medical company, in clipped tones, sounding like I was talking to Reverend Jim, or like a robot, "Can you. Help. Me. I. Have. A. Speech impediment". Mild, but there, leading me to annoyances when I have to repeat myself in endless, exhaustive loops. Sometimes, I find a way, with friends, I simply squeak- shout something mildly inappropriate like, "I said, I'm signing you up for a ceramics class!" I need to say, no, I can speak for me. To show it by being clearer... by answering the more simple questions. The more complicated, I'll leave until my eyes and face can help me.

Sleep schedules:
I've been doing phenomenally well. But being woken at 6 AM... and there is no need to comment someone sounds tired, for goodness sake. It's 6AM... has messed me up by 2 hours this week. I think I have to stay up a little later to get the averages back.

The Times, They Are A-Changin'...

Appropriate Treatment:
Sadly, medical care and its quality can still rely on how much a person has. Finding a good specialist who will deal with the Medicaid hassle is a rarity. And sadly, so many still have trouble when their job isn't simple. Are poor people inclined to be sicker? And if so, is the correlation or causation? Poverty is not a causation here, as epilepsy, like any illness, can strike at any economic level. Ah. Contributing factor. Which leads to:
1)Burned out doctors not inclined to dig below the surface, and are inclined to be judgmental, walking into gray areas of patient treatment... what is bad bedside manner and what is abuse?
2)Along with side effects that can increase or decrease an appetite, there's mood changes, nervousness, and innumerable other side effects. Prescription sheets could be made into a movie by Rob Zombie. Then there's the tendency to sap nutrients from the body, and some patients might need to go on supplements that they can barely afford. Not to be disgusting, but if the situation isn't rectified, sometimes their pee can be worth more than gold!

I've been following trials for varying "gentler" drugs. They tend never to go past the formative stages.
The classics never die, do they? Well... Depekote has shown in some tests to decrease brain size. That I caught the Email and knew, without the use of a brand name, exactly which drug was being discussed, scared me.

What's being done? Every "Living With" book I've seen indulges in prehistory, up to and including nasty treatments, and offers a small chapter on " But it's getting better, honest!"
Ok. So something needs to be done and the usual treatments are detrimental. This, besides the poverty issue, is pretty universally accepted. But I haven't seen anything saying, "We have started doing ABC...". As for the poverty issue, this too needs rectifying. Part of it begins with social services, the insurance companies. Part of it is the doctor's responsibility. The patient needs to ask questions, to say no when something is wrong and demand proper care. They should not need to draw diagrams. They should not feel shame.

Sources: Epilepsy, medical care, and poverty, 2011-Health Care Disparities in Epilepsy, 2011
CIDPUSA Epilepsy and Nutrition
Studies on Depekote and Brain Shrinkage-Epilepsy.com: Valproic Acid Reduces Brain Volume?