Monday, September 30, 2013

Family and HKPP

This has been a wild month, y'all. Sorry I've spent so little time blogging. I expect the next two months to be even crazier, but I am going to try to keep things updated here.

BIG news on the HKPP mom is acknowleging that she is a carrier of the condition, and wants to try the diet restrictions to see if her symptoms improve. We also believe she has two cousins with HKPP, and she plans to contact them for more info. Wow. WOW.

Anybody who knows what I've been through my entire life with this disease, and specifically, what I've been through with my mother, knows how huge this is. I've traced it back to her paternal grandmother, based on stories about her bizarre sickly behavior and random periods of being bedbound having to be waited on. Mom's father also displayed symptoms. He would frequently lie on the couch and "act like he was dying", and insist that he couldn't get up. Then later, he would be up and around again. Everyone said he and his mother were lazy and crazy, and he even spent time in a mental hospital. How horribly sad that my grandfather and great-grandmother suffered like this and nobody believed their misery was real.

At this point, I'm waiting for Mom to contact the cousins, both of whom have mentioned "Fibromyalgia" type pain and limitations so severe that they have lost quality of life. I've never met them, but I hope they will be willing to accept the information I send their way. With a 50/50 chance of having the condition, well...let's get real know it just about has to be HKPP. I was misdiagnosed with Fibromyalgia myself when no one could figure it out...that's the go-to condition these days when doctors get tired of searching. So anyway, I hope I can connect with these relatives, at least long enough to share the facts. I pray it's helpful to them and their future generations.

The PPA Conference is less than 2 weeks away...I can't believe it. I hope I'm feeling better than I'm feeling at this moment, because I'm currently laid up in bed, weak and in a great deal of pain. I really need to be in decent shape for what will be a busy weekend of seminars and socializing.

Talk to you soon.

Wednesday, September 18, 2013

My first NaNoWriMo video blog

Clickety-click to visit me on YT.
I've uploaded an intro to my upcoming NaNoWriMo.
(Sorry I smack my lips. That is SO annoying.)

Sunday, September 15, 2013

"It's late September and I really should be back at school..."

A bit of irony in using that song, but the line is appropriate.

As I mentioned recently, I am not allowed to return to college thanks to being forced on Social Security. It is something that I have a hard time coping with, but I'm trying my best to stay busy and productive. One thing I've done is resume MIT OpenCourseWare, which is an excellent alternative to the classroom if you're not wanting to (or can't) take courses for credit.

I decided to brush up on Psychology by watching Intro lectures, and I love it.

I still wish I was in a classroom, but I'll live. It's not like I have a choice.

One advantage to OCW is that there is no deadline on anything. I'll be able to put this on the back burner while I complete NaNoWriMo, which would never happen otherwise. I look forward to checking out more courses. I have Pharmacology and Biology/Genetics in queue, as well as more Psych.

NaNoWriMo plans are coming along, but I'm already finding myself saying "What were you thinking?" in choosing a collection of short stories instead of one novel. My mind is scattered all over the place, as opposed to focusing on one plot. Eeek. I'll manage. I am really loving some of my storylines, although I have very little more than a few pages of synopses at the moment. I'm trying to decide whether or not to dive into video blogging as a way of documenting the journey. I'd like to share my feelings about stories and characters, etc, without having to sit here and type out a blog. I'll be doing quite enough typing as it is. We'll see.

Daily life with Periodic Paralysis continues to be unpredictable. I have made another attempt to titrate the acetazolamide, but the side effects remain nearly unbearable at times. I keep a migraine, stomach is upset, and senses are heightened. I have to wear sunglasses or stay in dim rooms most of the time. I can't stand to be touched. I have a weird gag reflex to certain tastes. Smells range from annoyance to full blown HKPP episode, depending on what it is. Just the sound of my phone makes me want to have a meltdown and throw it into the street. I have lost count of the calls I have failed to return. Family, friends, and pretty much everyone. I would rather utilize any other form of contact under the sun than the telephone. It is literally painful. My senses were screwed up already, but they are much worse since the HKPP treatment was kicked into high gear. On a happier note, my legs are hanging in there. Still heavy and weak, and they hurt horribly, but they seem to tolerate slightly more activity than they used to. My upper body still needs a great deal of improvement, but I don't paralyze every single day anymore. I feel like I'm repeating myself (how much of this have I blogged already?), so let's move on.

I finally made the official decision to stay in Alabama, in spite of being treated in Jackson, MS. I took care of business at Social Security and the DMV, and now have an AL driver's license. My photo upgraded from "looking stoned" to "looking like a complete psychopath", so that's unfortunate...albeit, funny. I'll spend this week getting my old car (whose name is Midori the Gypsymobile) transferred to AL, and following up with DHR concerning SNAP. I've tried to survive without food stamps, but it honestly hasn't been going well. I talk about food a lot but not the fact that I can't afford it and pretty much live on charity, so there it is. If you've been following long enough and know how much my SSI is, this isn't a surprise. My case worker was nice, and obtaining assistance shouldn't be a problem. On October 1, I'll apply for a handicap-accessible government subsidized apartment and get on the (mile-long) waiting list.

So that's what I'm up to lately. I hope everybody had a great summer. Hard to believe Autumn is right around the corner, but I couldn't be more ready for the 90-100 degree temps to vamoose.

Talk to you soon, friends. Thanks always for being here.

Monday, September 2, 2013

It's already September???

Sorry my blogging has been sporadic lately...trying to stay busy! It has been a morale boost to dive back into my Genealogy. I've traced one side of the family back to 1642, another to 1705, and another to 1711. I even found the family crest from the 1600s in France!

The top one-third of the shield is called a Chief. It signifies dominion and authority; often granted as a special reward for prudence and wisdom or successful command in war.

The color gold represents generosity and elevation of mind.

The azure shield is a representation of truth and loyalty.

The argent circles are a symbol of peace and sincerity.

I love history, especially local history. My family is very prominent on the Gulf Coast, even founding one of the cities we know today. We still own some of the same land centuries later. Pretty amazing to think about!

I've also been preparing for NaNoWriMo. It's sneaking up on me! Hard to believe it's already September. I have several solid ideas for short stories, and I've been looking at books and watching movies in the name of research. I'll start on the outlines tonight. If I can nail these plots, I will have some pretty cool stories. A few of them are controversial, which some people won't care much for, but that's what makes a book intriguing. I don't want to simply entertain people. I want to ignite emotion, and make them think. We'll see how it goes.

The Periodic Paralysis Conference is five weeks away, and I'm still about $125 short. The economy is rough and nobody really wants to purchase art these days. Galleries are closing left and right, including most of the ones my work was in once upon a time. I also had a tire blow-out that stranded me on the side of the road the other day, so that was a financial setback as well. Then of course there is all of the medication in my HKPP regimen that's not covered by insurance. I'm surviving only by the grace of God and the generosity of others. I'm very grateful to all who have helped keep me alive over the last two years.

Time to go stir the beans and peas on my stove. Hope everyone is having a great Labor Day.