I blog gluten-free

Sunday, June 30, 2013

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.

Friday, June 7, 2013

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?

Thursday, June 6, 2013

Emily Post Can Teach Your Grandmother to Suck Lemons

I think the time has come to bring back polite convention. "How do you do?"Can be answered most politely as follows: "How do you do?" "How do you do?"or, "How do you do?" For continental flavor, one can reply in Swedish: "hur mår du?"  Now that I sound like Emily Post upon sucking a lemon...

Conversations are already fraught with fear for me. Am I audible? Are there forces beyond my control that I have to compete with? Is someone notoriously shouty? Am I running my words together and feeling weird? Am I having an off day? Add someone who will joyfully speak for me, and think it's for my good ( Ground rule: If,  and only if I'm unable to communicate do I wish to have others say words that at aren't mine and claim them as such. It's simple, and I'm being reasonable, right?) 

Also, for the love of God, there is no call to suddenly whip out things to show and pass them swiftly in front of my face. Um, scary, much? Swiftly moving hand, ahoy! 

Let me see if I can create a simple diagram:

If someone engages me in a conversation... "Beth, do you like Where you are now? What do you do for fun?" I'm going to be very frustrated if no words can come out of my mouth in answer because someone has spoken over me. (These are the moments I'm grateful for dark sunglasses, as my expression can be slightly hidden... I hope the fact that I'm tempted to whisper something like, "My BDSM workout videos were a real hit," isn't apparent to people who've babysat me.)
The related, speaking for me... claimed as a good thing... uh, NO! I can speak! Help me, don't hurt me!
I like people, but I like to be spoken to... "My friend bought you dirty cupcake tins at a sex shop... knows your humor is a little raunchy at times" will make me smile. "She is very silly, wonderful sense of humor"- I know it's meant well, but coupled with everything, I feel like a well trained puppy and want to scratch my ear with my foot and look disgusted. 
Plus: All those years of speech therapy? Um... what use if I don't practice?

Monday, June 3, 2013

Dream a Little Dream

Everything is a work in progress. I occasionally get irritated when things follow the "One step forward, two steps back" approach,but I'm enjoying... becoming aggravated and frustrated, throwing up my hands, won't help. Sleep is precious. It lets the body heal and rebuild itself. I've always been something of a lark/ party animal hybrid. Being exhausted may mean I sit and look ready to drop but not quite. I'm working on scheduling a bedtime... and a sane time for waking up. So far, it's ensuring comfort... am I past old nightmares, have I cleared my mind.A melatonin formula with a fast release and steady release double coat helps... I see not like the idea of me on sleeping pills. A glass of milk... not hot,just your standard cold glass of milk helps. I find chicken helps, but this is probably just me. Sometimes, I'm good... very good, for weeks, then am slap happy for God knows how long, then I'm up with the farmers. The first thing I want to do is sort out my next project, go grab some nature photos, and clear my mind. I know my basics and try to remember them: 1)Remove stressful activities and their reminders from bedroom 2)Invest in good-quality sheets, blankets, etc. 3)Start eliminating caffeine around dinner time 4)Try to Dr-pressurize around that time too. Music, good books. Some meditation practice. I need to quit studying late. I want to know more,figure things out. Sometimes I wish I liked mindless romance novels, but I never can force myself. Go for a walk. I also need to just remind myself that I've got this!