I am aware that I am less than some people prefer me to be,
but most people are unaware that I am so much more than what they see.
— Douglas Pagels

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 front...my 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 here...you 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.


Edit Note: Mom quickly backed out of all of this, and tried to pretend the conversation never happened. Apparently "God" spoke to her again and she's back to fighting demons instead of her medical conditions. I give up.

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.