Monday, April 14, 2014

The Rest of the Story

I received a call on March 1st.

It was my mother, and she was in the hospital.

She's anti-medical, so I knew it had to be bad.

It was.

A diagnosis of terminal cancer.

That was six weeks ago.

Today, she is gone.

I didn't even get to see her or say goodbye.

I'm glad she is no longer suffering.

But I'm so sad that she suffered at all.

And I am devastated over what could have been.

My mom and I had a rocky relationship.

But we were too close-knit to give up on each other.

This happened so fast, I can't put it into words.

Shock and sorrow to the point of physical pain.

I can't believe this chapter is closed.

My parents are gone.

I can't even wrap my brain around that.

They died too damn young.

My mama was funny.

She was feisty as hell.

She was the most stubborn person I've ever met.

And she will be missed beyond belief.

Sunday, April 13, 2014

A Few More Happenings

Uncle Steve found this awesome Cecropia Silkmoth in a parking lot on our way to Jackson last week.
It was the size of my hand.

I sent Zoey her first Sock Monkey.
I'm a Bama fan, but my brother is an Auburn fan.
Thankfully, I love my family more than a football team.
Here's my Boo Boo reading Monkey a book. :-)

I was given a Where's George dollar a couple weeks ago.
I logged it in, and couldn't resist officially joining the fun.
I now have a stamp so I can register every bill I receive.
Can't wait to see where they end up!

Tuesday, April 8, 2014

MDA Appointment 4/08/14

I met with the MDA and the Neurology team about what to do next. Discussed my swallowing issues, shortness of breath, migraines and nausea, the horrible year with paralysis I've had so far, and the level of pain that makes me want to be shot in the head. Told them about the mood swings and meltdowns caused by the acetazolamide. Nothing to be done about it as anti-anxiety meds cause paralysis (already tried them). Also can't get off the acetazolamide without falling back into a nearly constant state of paralysis (tried that too). The only pain med that I am aware of that I can safely take is ibuprofen (which my renal doc forbids, but I'm taking it anyway).

The new doc who spoke with me first was very interested in my genealogy, so I want to dive into my mother's family history and see if I can pinpoint their origin in the UK and France. New doc also mentioned albuterol for the breathing and swallowing issues, and that was shot down because it is a dangerous paralytic trigger. Steroids are potentially deadly with Familial HypoKPP, as are many other medications. It would make things worse instead of better.

I remained a lot more calm than I thought I would. I struggled not to curse and cry, but I managed not to. I have never acted like that in my life before recently (not even my ex-husband heard me say a cuss word - ever) but I am a freaking disaster on these anti-paralytic meds. They cause some pretty harsh chemical changes in the body, but I unfortunately have no choice but to stay on them if I want to survive and have any quality of life.

HKPP is a no-win situation, and everybody knows that. Angie with Mississippi MDA is wonderful, and she is recruiting Alabama MDA to help me obtain pulmonary/sleep testing as well as a power chair at some point. I have to contact Shae in Birmingham to follow up in a few weeks. In one week, I'll see my local primary physician to bring him up to date, then back to Jackson for Renal Clinic in June.

Sunday, April 6, 2014


Hello From Bandit.
Got Breakfast?

Meanwhile, In Lower Alabama...

Preparing For A New Chapter, Ready Or Not
I'm Much Closer To Not, For The Record

I'm finally spending a little more time out of bed. I'm still having paralysis, but some days are better than others (some hours are better than others, too). I've been very busy cleaning, sorting, and packing for quite some time. My back thinks it is absolutely dying and it doesn't allow me to do much, but I'm doing what I can when I can.

I don't have a place to live yet. I'm still fighting with Social Security to the point of meltdown, but I am hopeful that things are going to improve soon. They are trying their best to kill me off so they don't have to pay me, even though they were so quick to declare me disabled. I am not allowed to work, go to college...nothing at all thanks to Muscular Dystrophy, but they sure don't want to have to help me survive (let's not forget that I was a working, honest, tax-paying citizen prior to April 2011, thanks). But they literally don't care. It's a shame and an unnecessary stress that the disabled have to force the government to follow their own laws.

At any rate, we're getting the boot. Everyone who lives here will be moving asap, and the property will be sold. My grandparents built this house over 50 years ago while raising 4 kids. There is a great deal of history here, and while I am beyond tired of sharing space with others, I know how lucky I've been to have lived at MawMaw and PawPaw's house. I just wish they could have been here too. Being in their home has made me miss them more than ever.

So anyway, this is partly what's going on with me lately. I can't talk about the rest yet, just know that I need and appreciate any and all thoughts and prayers. I'm broke and sick with no way out, and I really don't know how on Earth I'll survive in this society with so little to speak of. I am extremely stressed and sleep-deprived, in terrible pain, still very weak, walking with assistance, and randomly flat on my back throughout the day. This has been a tough year so far, but I'm going to keep hoping that things will get much better.

Talk to you soon, and thanks again for the well wishes.

Monday, March 31, 2014

Camp NaNoWriMo

As I mentioned in the previous couple of blog entries (yes, the "Let It Go" post wasn't just a random rant), things have been very stressful lately. My absence in not blogging as often as usual will eventually be explained. Until then, I am just trying to keep things going (but more importantly, keep me going...preferably with my sanity intact).

In the midst of all that's going on, I decided to dive head first into a NaNoWriMo event called Camp NaNoWriMo. It's not exactly like November's National Novel Writing Month - it's a lot more lenient. At Camp, you call the shots. Set your own word count goal, and meet that goal in 30 days or less, writing in any genre you choose (including non-fiction). At Camp, you are assigned to a "cabin" with a handful of writers who have similar goals. You and your cabin mates have your own "corkboard" where you can post notes to the group. It's kind of a neat way to interact without having to dig through endless forums.

It begins April 1st. I've set a goal of 15,000 words, an average of 500 words a day, and I am going to work on the novella I began last November. The Lost Children chronicles a family tragedy and the separation that results from it. It is inspired by something that happened in my own extended family a few generations ago. I learned of the story during my genealogy research, and I was moved so deeply, I knew I had to write a manuscript based around it. I intend to spark every emotion under the sun...The Lost Children will make you laugh, cry, cheer, and become absolutely, positively enraged. Both justice and injustice will abound. I have cried through the entire story so far, and I hope my readers love Cecily, Annette, Odessa, Benjamin, Joseph, and Tilly as much as I do.

I think Camp will be a temporary escape from life - at least for an hour or so each day. I figured it might do me some good.

I'll check in and let you know how it's going!

Saturday, March 22, 2014

Long Overdue Health Update - 3/22/14

I'm having a hard time blogging, if that wasn't obvious. Things are extremely stressful at the moment, and I'm still trying to recover from the 2014 body infection and paralysis of doom. At any rate, I'm here with a boring update.

Three weeks of fevers, three infections, three antibiotics, loads of cough and cold meds, an ER visit, major paralysis including my digestive tract (lost around 7 pounds), a trip to the docs in Jackson, increased HKPP meds, and I am finally...FINALLY...beginning to snap out of this nightmare. I am back on a walker and even driving a little bit. I managed to attend a Doctor Who meeting today in a nearby city, before coming back home and crashing into bed with a migraine and weakness. I'm going to have to take my recovery a little easier I guess, but it's hard when I have so much to do. I have been down for literally seven weeks. I was bedbound nearly the entire time, and my aunt has come over each day to help me. She still is, because I'm still unable to do things like laundry or cook a real meal other than using the microwave or toaster oven (which is better than nothing, I realize). She has been a lifesaver, as usual.

My aunt and uncle took me back to Jackson for an appointment last week. I was in a wheelchair, and we decided that in order to bring me out of my prolonged paralytic state, the meds needed to be increased. Dr. F is hoping they can eventually be decreased again, but I don't see that happening. It appears as though I need the increased meds just to be able to function for a couple hours a day. The rest of the time, I'm here in bed trying not to lose my mind. Next week, I'll go to the local clinic to check my potassium level, then it's back to Jackson in April.

My birthday is tomorrow, and I hope I'll at least be able to get up and do something. I don't know what it will be, I'll just have to play it by ear.

There is a lot more going on in my life, but I am not ready to go there yet. I'll explain when I am at liberty to do so. I appreciate the prayers, thoughts, well wishes, gifts in the mail...I have such thoughtful friends. Thank you for hanging in there with me. Hope everybody has had a much better 2014 than this. I'll eventually get back on track with things around here, I promise.

Sunday, March 9, 2014

Let It Go

This damn Disney song makes me ugly-cry like a two year old.

Frozen is much better than it appeared in the trailer. In fact, the trailer showed nothing but funny and intriguing elements while completely hiding the fact that the storyline is a boohoo fest. It rivals Mulan, which in my opinion is one of Disney's very best non-Pixar animations. In spite of a magic power being involved, the plot is believable and not overplayed like a lot of "Disney Princess" movies are. It's heavy in metaphors that people of all ages can apply to their own lives, to the point of psychological impact. The Oscars for best animated feature and best song are well deserved. Had Let It Go not won, no doubt there would have been a riot.

The story represents so much to so many people. For me personally, it has been a struggle to let go of the injustice, oppression, and criticism I've received most of my life for being who I am and for some of the life decisions I've made. A lot of people don't understand me, and unfortunately we humans are notorious for knocking what we don't understand. As a result, some think I'm weak and wrong and wish I would conform to their version of "normal".

Newsflash: it is never happening. I am a Southern white Creole-Cajun, hetero-non-sexual, non-partisan humanitarian, culture-embracing, gay ally, anti-racist, non-denominational Christian woman with crippling, life-threatening systemic disease who survives on government assistance. Deal with it - every bit of it - or promptly pick up your toys and go home. This is not a game, so don't think for a second that I am a challenge to be conquered. You will lose. Miserably.

As the song says, I'm not going to be held down by someone else's ideal, and I don't care what they have to say about it anymore. Those who truly love me respect me, my feelings, and my life decisions, just as I do for them. And even if I am Queen Elsa - the "different" one with the freak genetic condition that makes me appear weak - isolated by the cold around me, I will continue to stand my ground and be content in knowing that I'm free of the control of mental hijackers.

As for wrong - I'm not. Not anymore. Thank God, the past is in the past and I'm never going back. Beyond a shadow of a doubt I've finally done right by myself, and I will never regret it. I'm sure I will continue to be misunderstood, judged, and criticized, but I strive to let go of the fear and pain that accompanies these things. I am not a prisoner. I will be me whether people like it or not.

Here I stand, and here I'll stay. Let the storm rage on.

Thursday, March 6, 2014

Okay, I'm Here...Sort Of.

I haven't felt like blogging. I'm still stuck in bed with hurting ears and partial paralysis, and I'm just SO over it. There are no words for how sick I am of this BS. I need to be up and around, I have things to do. Especially now, as I received heartbreaking family news the other day. The clock is ticking on life as I know it, and there is much to be done. I will have to explain later...I am not at liberty to do so at this time.

My aunts have been saints throughout my illness. One of them brings me something to eat every day, and picks up snacks and medications when I need it. Life has come to a complete halt, needless to say, and I would not make it without their help. I'm thankful they care.

My nieces have both had birthdays. I am missing their parties, which sucks. I'll send them gifts when I finally get out of bed. I hope and pray it'll be soon.

Such a hilarious child. So animated.

My boo boo is such a big girl now.

Love them so much.

My birthday is around the corner, and I would appreciate feeling human by then. Fingers crossed that I'm out of this bed in the next week or so.

Tuesday, March 4, 2014

Sunday, February 23, 2014

Quick Update

Things have been bad here, and I still have a long way to go, but I'm finally starting to see a light in this tunnel of hell.

Really appreciate my aunts and my uncle bringing me food and meds while I'm stuck in bed. I've lost 6 lbs from being so ill, but I'm thankfully keeping a little bit of food down now. Still bedbound, partially paralyzed, and have the other symptoms going on, but hopefully it will all pass soon. I've been sick in bed 50% of 2014 so far, and that statistic sucks.

Thanks to those who sent messages and checked on me.

Better days ahead...I'm sure of it.

Wednesday, February 19, 2014

I am very, very ill. Thoughts and prayers appreciated.

Sunday, February 9, 2014


Now in bed with either the flu or a respiratory infection.
Fever, chills, coughing, the whole miserable nine yards.
Winter can kiss my aching butt.

Thursday, February 6, 2014

NaNoWriMo 2013 Writing Project(s) Update

Currently awaiting a cover illustration for "Four", a short story about a sports phenomenon whose success is fueled by a dark secret.

Stories that I hope to complete by 2015:

The Lost Children - Tragedy separates a large Gulf Coast family during the Great Depression. Inspired by a true story.

The Kate Letters - A troubled high school senior is given a handcrafted box that contains letters from another era.

Once Upon A Night - A timid boy encounters the town legend, who happens to be a lake monster in need of a hero.

I'll keep interested readers posted.

Monday, February 3, 2014

2014 Goal: New Design and Post on Thoughts & Theories

I'll be working on new templates for my blogs this year. If you recall, it is one of my 2014 resolutions. I decided to start with Thoughts & Theories, and I look forward to catching up on content as well...I'm pretty far behind there.

I wrote about the outrage concerning Coca-Cola's Super Bowl commercial. As always, feel free to read it at your own risk.

I have a lot going on, but I'll be back soon with a proper update.

Saturday, February 1, 2014

Many Thanks To My Readers

I was talking with a friend today about the history of my website. I've been "ugottafriend" for many years. I started out on Yahoo Geocities, and eventually Yahoo Webhosting. In spite of the upgrade and the fact that I had a few pretty cool pages back then (the biggest one being a baby name listing), I only achieved about 8500 hits over a period of 5 years. Then the entire site crashed, and I had to start all over. I decided to do so a few years later, in 2008, via Google Blogger. I set up a few generic pages, and I eventually registered the domain

Fast-forward another five years, and the number of hits on my site is more than 10 times what it once was. I reached 100,000 this week. For someone who has no giveaways, paid reviews, or other endorsements, no kids or pets to dote over, absolutely no advertisements or salesmanship, a complete lack of organization, little HTML knowledge and basic templates, I find it pretty remarkable that people from all over the world even bother to give me a minute or two of their time. I'm just another face in the crowd, but this outlet gives me the voice that I've been searching for all my life, and I am humbled that anyone cares enough to hear it.

I'm not worthy, but I am grateful. Thanks.

Tuesday, January 28, 2014

Wacky Weather Update

Snow & Rain, Clouds, Sun, Sun, Rain, Thunderstorms

Welcome to the Gulf Coast!

Sunday, January 26, 2014

Wacky Weather

Sun, Rain, Snow & Rain, Sun, Sun, Rain

Do the Hokey Pokey and you turn yourself around...

Edit Note 12:00PM

Less than 5 hours later,
they changed Wednesday from sun to snow.

I can hear the weather forecaster now:

"The sun will be shining on Wednesday.
Actually, let me double-check that."
*consults Magic 8 Ball* "No wait...SNOW!"

Friday, January 24, 2014

Nothing important, just a couple of pics.

I ordered some geek specs from Zenni. I am a freak who has a large head but a child-sized bridge. This was the only pair they had that fit the criteria. Not too shabby, I guess.

My potassium script now comes in a bottle as big as my head.
It could be worse.

Wednesday, January 15, 2014

I'm here. I guess I'm going to talk television and silly crushes and health and nieces today.

Greetings, people of Earth. I'm still sick in bed. Just weak, mostly. Finally getting around on the rolling walker, but not terribly well so I see the outside of my bedroom once or twice a day at best. I've been doing a lot of online movie and TV watching...not something I do often, but it's passing the time. It's been a fantastic distraction, actually. One that has been much-needed, as if that wasn't obvious by how 2014 has gone thus far.

At any rate, I'm a bit behind so let me start with Doctor Who. Matt Smith's finale was outstanding, as I knew it would be. I was discouraged by how many people disliked the episode, and I could not disagree more with their complaints. It was amazing, and Matt will be missed terribly. He will always be my first Doctor, and has a special place in my Whovian heart in spite of being head over heels over the magnificent tenth Doctor, David Tennant. Eleven was equally amazing in his own way, and many of his episodes are the best Sci-Fi television I've ever seen. If you have never watched (it's not for everybody, but I say give it a try), and I was only allowed to suggest one episode, it would be "Vincent and the Doctor" hands down.

Watch it with a box of Kleenex.

Now allow me to switch gears to another BBC masterpiece:


Holy Epic Win, Batman, I cannot express how mind-blowing this series is. Where do I even begin? This was my introduction to both Martin Freeman and Ben Cumberbatch, and I could not be more impressed. If you know or care anything at all about The Adventures of Sherlock Holmes or even if you don't, do yourself a favor and watch a few episodes. They are hour and a half...but this show is so very worth the time. Every actor does a stellar job in their roles. Sherlock is a whirlwind of brilliance, confusion, emotion, and just plain awesomeness. If you have any interest in Mystery or Literary Fiction, it is a must-see. The most recent episode, Season 3 Episode 3 ("His Last Vow") is quite possibly the most phenomenal 90 minutes of television I have ever seen in 35+ years on this planet. No joke. It is absolute perfection.
I mean it. These two are glorious.

I recommend starting from the beginning with S1 E1. There are only 3 episodes per season, so you can catch up quickly. Feel free to tweet me to discuss the show, if you like.

I'm going to just go ahead and say it - John Watson is my dreamboat. Ha! People who know me know I'm usually hooked on non-fiction. I don't go silly over many fictional characters, or men in general for that matter, but this one...oh yes, most definitely. I've tried to make the best of my bedbound state of health and have inundated myself with all things Martin Freeman. He has talent for sure, easily one of my favorite actors now. I'm considering sending a letter of appreciation across the pond. I've never done that before, but I just might for him.

Yes, he's my laptop wallpaper. No, I'm not ashamed.

If you haven't been living under a rock, you know he's also Bilbo Baggins, aka The Hobbit. I watched the first movie last week, but have yet to see the second. It's still in theaters, and I'm, well, stuck in bed unable to function. It would have been nice to see Martin's beautiful face on the big screen (oops, did I say that out loud?), but I'll have to wait until it's available to rent...which is okay.

I'll stop gushing now. :) Just felt like sharing.

In health news, it was confirmed that pneumonia is not the cause of my screwed up lung. So, that means it's something else, which isn't good news. Since the paralytic episodes became severe a few years ago, I've been having trouble breathing and swallowing, sleeping, and at times staying fully conscious. I made the mistake of mentioning this to my mother, and now she's not speaking to me again. She withdraws when she doesn't want to face something, so as I always have, I am dealing with this situation solo. When I am up and around again, hopefully soon, I'll be pursuing a Specialist in Pulmonology. I am truly exhausted. I've decided if I make it to 40, I'm going to have the biggest freaking birthday party in history. Everybody's invited.

In much happier news, Josephine and Zoey are growing like weeds. Jo is talking up a storm now, and she is absolutely hilarious. Zoey Boo Boo finally figured out how to crawl forwards...ha...and she is the sweetest, happiest baby. I fear that I won't see them grow up and that they will never really know me. I wish so much that they didn't live two states away. I figure they'll probably think of me as the "weird" aunt, if anything. I suppose I could live with that, though. After all, they would be right. :)

I hope 2014 is being kind to you all. Be well, my friends.

Friday, January 10, 2014

2014, I Surrender

Missing my sweet friend Brandi. Still can't believe she's gone.

A local friend's husband was killed in a car accident Tuesday.

Wednesday, I melted down with a fever of 102, chills, and of course HKPP. Haven't been able to walk since. I was taken to the local clinic today. Ear infection and a bad lung. Bedbound.

2014 has absolutely bodyslammed me. Waving my white flag.

Thursday, January 2, 2014

Video Tribute to Brandi

She sure loved The Beatles. This slideshow by Jackson Crowley is well-done and appreciated.

I see her face and her name on Facebook and Twitter and I subconsciously await her usual updates. Then I snap out of it and remember that this nightmare is real. I can't believe it.

Wednesday, January 1, 2014

Angels Are Everywhere

I brought in the new year in the most unexpected way imaginable...attending an online memorial chat to remember a sweet friend who left us much too soon. Only two weeks ago she was sending me messages calming me down over something that had upset me. She had a wonderful way of doing that. She was never angry. She was always kind. She always gave everybody the benefit of the doubt. She was a peacemaker and the devil's advocate all at the same time. Her name is Brandi, her username is angelsReverywhere, and she was truly an angel on Earth. Loyal, hard-working, collected, hilarious, passionate, real, and a friend to all she knew. Not one person I've encountered over the past twelve hours could think of a negative word to say about her. She was a great person who was doing life right. Everyone is in shock and grief over this tremendous loss.

I've known her nearly six years. We chatted sometimes, and tried to keep up with each other on the bottomless pits known as Facebook and Twitter. I can't believe just two weeks ago she was concerned about me and wishing me well, now here I am still here and she is gone. I cannot wrap my brain around it. This is unfair beyond belief.

Dear Brandi, you taught me so much...more than you ever realized...and I hope you know how much your thoughtfulness and encouragement meant to me. I'll never forget our overnight chats. I'll never forget our daydreams about tiny homes and RVs and building cabins and being nomads on the road. I'll never forget your enthusiasm about angels and Airstreams and Volkswagen vans, and how much you adored your niece and your late father. I will never forget your smile, your positivity, and your sweet nature. Thank you for genuinely caring about me. I will miss you always.


Tuesday, December 31, 2013

Goodbye 2013, Greetings 2014

I can't believe we're at the end of 2013 already! What a crazy year this has been.

As always, I review my annual resolutions to see how well I accomplished them. I'm not going to beat around the bush here. Without further ado, here goes nothing...

1. Scoff all you want at me for following the crowd, but I need to lose weight.

I lost 13 of my goal of 20 lbs, then gained 3 back. New goal is to lose that last stubborn 10 lbs. From now own, this will be included in my "mainstays" section.

2. Overhaul my computer, including but not limited to better organization of all files and folders.

I made a ton progress on this, but I still have so much to do that it will now be a 2014 goal as well.

3. Sort through all belongings and get rid of anything not needed or used regularly.

I also made a lot of progress here, but I'm only half way done at best. It will also carry over to 2014.

4. Exhaust all possibilities with the government concerning SSI, college, etc.

Almost complete. College is not possible. SSI will be slightly increased in 2014, and I am in the process of qualifying for my own apartment.

5. Utilize the textbooks, DVDs, and other tutorials I have obtained over the past year.

FAIL with a capital F! In fact, this might be the failingest fail in history. Ha!

6. Complete, or at least put a massive dent in all unfinished art and writing projects.

She shoots, she scores!!!!! I feel like I redeemed myself a little here. Thanks to NaNoWriMo, I put a ginormous dent in my writing projects. I am so happy that I did this, and I'll be writing more in 2014! I've also completed a couple of art projects for family, and I'm almost done with one big one from college that's been on the back burner for a few years (yes, you read that right). I'll be sure to finish it next year, and I'll share the pic here!

The changes aren't drastic, but here are my new goals!

Drum roll please...

* Get settled in a new place of my own, or at least be on a reliable waiting list.

* Either utilize my possessions, or sell/give away. This of course does not include anything of sentimental value, just stuff with a useful purpose.

* Take updated photos of all art, complete everything in progress, and market my work.

* Have at least one short story from NaNoWriMo published, even if I have to publish it myself.

* Clean, backup, and reorganize my computer hard drives.

* Build or renovate all blogs and webpages until they are what I want them to be.

The Mainstays:

~ Get my health under control (aka DON'T CROAK)!

~ Stay involved in one or more charities/ministries.

~ Read more, write more, and learn more.

~ Strive to be a better person each and every day.

I greatly appreciate all who take the time to read my blog. I look forward to seeing you again in 2014, and I hope it is a most successful year for you! Take care and God bless always.

Friday, December 27, 2013

The last few days, and the next few days

My Christmas started off a bit rough. I left the house early in the morning on Christmas Eve, and found the youngest cat on the property, Lil Bit, dead in the middle of the road. He or she was the runt of the litter and outlived all of them, only to get hit by a car. Such a shame. My uncle is disappointed and said he hopes no more cats find their way here.

The crazy weather has my body flip-flopping from "somewhat functional" to "crash mode" several times a day. It's hard to make any plans when you don't know if you're going to be upright or not. At any rate, I had dinner with the local family Christmas Eve night, and Christmas dinner with my brother and his family. Christmas Eve, I made baked mashed potatoes. Christmas Day, I made three cheese pasta bake with alfredo, cheddar, and fresh mozzarella, crushed Ritz crackers, and bacon from the local butcher. The baked potatoes were especially a hit, and has already been requested by my stepniece at a future event.

That said, I have over-carbed, and my body is paying for it. HKPP and carbs don't get along whatsoever, and although I ate in moderation, it was still enough to be a noticeable issue. My next grocery trip will not include carbs at all, in fact, I will be going to the local produce stand and butcher shop - that's it. I will post my 2014 list of "recipes to nail" soon. I look forward to continuing to learn how to cook. I can't do it often, but I enjoy it when I do.

Not a lot of gift giving goes on these days, at least not among the adults, however I did receive a few sentimental items and a little bit of money - which is always helpful when you have no income. I also received several nice Christmas cards from my friends, including some of my blog pals. I am grateful to all who thought of me. I sold a pair of painted shoes, and turned right around and invested in more painting supplies with the funds. I plan to relaunch my Etsy store in 2014, with a lot more arts and crafts than I offered in previous years.

The next few days, I'll be catching up on housework (between HKPP crashes, mind you) and making to-do lists to knock out in January. I have every intention of resuming art and writing, simultaneously, in 2014. Stay tuned for my annual "resolutions" blog on NYE, as always.

I hope everyone had a blessed Christmas, or whatever holiday you celebrated this month.

Wednesday, December 25, 2013

Monday, December 23, 2013

Chocolatier, I Am Not.

Sadly, this...

turned into this.

I make some sort of chocolate candy every Christmas,
but this year, it became dangerous.
A deep stab of the finger almost resulted in an ER visit.
Thankfully, I got the bleeding under control.
The weather is horrible and the roads are flooded,
so I'm really glad that I didn't have to try to drive in that.
Liquid stitches are on the agenda tomorrow.
Unfortunately, my Chocolate-PB Bark was a casualty.
It could have been worse. At least it wasn't my wrist.

Thursday, December 19, 2013

Tardis Shoes

I've painted a couple pair of Tardis shoes this month.
One pair for my stepmother, the other for a friend's sister.
I've decided to start accepting commissions after Christmas.
Maybe I'll see some Whovians wearing my shoes in 2014. :)

Calligraphy Door Signs

Completed my nieces' projects!
Jo has a purple polka-dot room.
Zoey's nursery is animal themed.

Monday, December 16, 2013

Raw thoughts concerning an article I read last night.

I was appalled to find an article about a Russian actor who wishes he could "burn all gays alive in an oven". I am not gay, but I have gay friends and relatives, and I hope every one of them outlives that parasite.

I posted the article and shared my thoughts HERE.

Read at your own risk.

Monday, December 9, 2013

Education, Understanding, and the Battle of Senses

HKPP is an ion channelopathy and a systemic disease, and it is very complex. Not only has it resulted in kidney disorders, skeletal weakness, reproductive system failure, endocrine problems, and muscular dystrophy, I am also hypersensitive to lights, smells, touch, certain tastes, and certain sounds. Once it became more severe and I realized that I have sensory problems, my life started to make so much more sense. I can remember walking into class growing up and instantly feeling simultaneously drained, nervous, and agitated. I even escaped to the office or restroom sometimes because I just had to get out of the room, and I couldn't explain why, but I HAD to because I was in pain and felt like I was going to collapse. Unfortunately, this was never addressed on a professional level in school, but there were plenty of mean and ignorant people in my life who said I was crazy, faking, seeking attention, and never took me seriously.

I found the same thing happening in college when my health began to plummet again. I definitely don't regret going to college, but I regret spending extracurricular time there, because it did more harm than good. Hindsight is 20/20, as we all know. I also finally figured out that public places like Walmart were a big trigger thanks to the crowd and lights. I shop at smaller grocery stores now (except the occasional Publix run, but I try to go during non-peak hours when few are there...also, thank God for power chairs). I wear sunglasses a lot now, including indoors, and it has made a big difference in how well I cope with sensory overstimulation. I spend a lot of time alone now in a quiet, dimly-lit room, which might sound sad, but I'm going to do whatever helps. People may think I'm weird, crazy, or a loner, but there are reasons for everything I do and I'm finally learning that the criticism of others is their inadequacy, not mine.

This is a big world, and there are an awful lot of people in it that we must coexist with. It should be everyone's duty to learn to do so with respect and grace. Education and understanding are the only way we will progress as the human race. Why wouldn't we strive for that? Is it not our mission to grow and become better with each passing day? We owe it to ourselves, those around us, and future generations.

Friday, December 6, 2013

Today's project

Hand-lettering is very meticulous work.
I decided to attempt something somewhat classy
instead of doing baby cartoony stuff.

There has been a boom in my family since late 2010.
I have 19 new cousins. I'm not exaggerating. Nineteen.
Here are 4 of them (yes, they belong to the same parents).

There are 21 babies total, including my nieces Jo and Zoey.

Their projects are next. Stay tuned. :-)

Sunday, December 1, 2013

NaNoWriMo is over. December has arrived.

Oh hey look, a REAL update! Stand by for rambling:

NaNoWriMo ended on an extremely quiet note. People dropped like flies after week two. I knew to expect it, but it still disappoints me that most of the cool peeps I just met are already gone. Boo. That's the way the ball bounces in NaNoLand. Maybe we'll reconnect next year.

So what's next for me? Craft projects for family, all of which I am way behind on. I'll share pics when I'm done with each, and don't's not ALL going to be Doctor Who stuff (but some of it will...I'm just with it). :-)

Absolutely loved the Doctor Who 50th Anniversary Special, by the way. Good show!

In January, I will pick up my writing again and begin revising one of my short stories. I plan to complete the manuscript for that story in early 2014, and will pursue publishing via magazines or fiction journals. I won't rule out self-publishing, but we'll see how things go.

I will also attempt to contact charities again for my non-profit eBook project.

I have a local doctor appointment tomorrow. Hopefully, it will go smoothly.

How sad about Paul Walker. Such a terrible loss. He has a 15 year old daughter whom he had full custody of, and his charity work can be found here. Let's show them some love.

I have to be honest and say that December is a pretty depressing month for me, but I am absolutely positive that it will be better than last year. Thank God for that.

Thursday, November 28, 2013

Tuesday, November 26, 2013

NaNoWriMo Complete

I am nowhere in the vicinity of finished with these stories. As far as NaNo is concerned, however, I'm shutting this puppy down a little early, but at the goal of 50K. I have too much going on in my life and not nearly enough sleep.

Thank you all for your support and encouragement through the month of November. I learned a great deal about how this works, and I look forward to attempting NaNoWriMo again in a couple of years.

Those who were interested in reading my stories, stay tuned. I will revise and release at least one, if not several, in 2014.

Monday, November 25, 2013

Prayers for a friend

One of my dearest friends is having unexpected bypass surgery today. He has multiple blockages, and he is only in his early 40s. He has a young family, and they need our thoughts and prayers.

I'll update here afterwards. Headed to the hospital shortly.


He ended up having a quintuple bypass. He's recovering well, albeit, in a lot of pain.

Also, I thought he was 40 or 41 but he is only 37. Gracious Lord. I'm so glad he's okay, and I look forward to seeing him up and around again soon.

Saturday, November 23, 2013

Tuesday, November 19, 2013

NaNoWriMo Day 19

I have a jumbled mess at the moment, but at any rate...

A Special Visit!

Aunt Kelli loves her Zoey Boo Boo!

Monday, November 18, 2013

Letter from Germany

I received a letter from Dr. Lehmann-Horn stating that they have received my blood and was able to extract my DNA. They issued a "family code" and that is the code I will use when I send them email or medical records. They want as many records as I can get my hands on. I will attempt to make the trip to Jackson soon (my next appointment isn't until March), if I can't get copies of my records via mail or internet. Sadly, I was told that some of the records were lost, but they should certainly have something on me.

Will keep everyone posted.

Friday, November 15, 2013

THE 8TH DOCTOR!!!!!!!!!!!!!!!!!!!

*Taps Microphone*


******************HAPPY SCREAMS********************

If you don't know who this magnificent man is,
allow me to introduce you to Paul McGann.
I call him "The Beautiful Doctor".
It's because he's ridiculously gorgeous.
He's also a very experienced actor,
and he didn't get a fair shot at Doctor Who.
I was hoping hoping hoping they would do this.
Seeing the 8th Doctor's face on my screen tonight after
coming home from the hospital seriously made my day!

Monday, November 11, 2013

NaNoWriMo Day 11 Stats

My life is a bit of a wreck right now,
but NaNoWriMo isn't going too badly.
Almost to 20K, and I plan to be at 25K
no later than Saturday at midnight.

Tuesday, November 5, 2013

Things are pretty bad right now

I'm very ill at the moment, and high levels of anxiety in the family is making life unbearable. If you're out there and you pray, I would appreciate a prayer on my behalf.

Sunday, November 3, 2013

NaNoWriMo Day 3 Stats

Sorry it's hard to see. Feel free to click.

Thursday, October 31, 2013

NaNoWriMo 2013 Begins

It's time!

I and over 200,000 people from all over the world are diving into a 30 day, 50,000 word writing marathon.

I look forward to introducing people to the amazing Felix Valentine, Kate, Charlie and Weebe, Detective Anderson Bradshaw, the bone picker, Lise and Belle, a ghost who gives great advice, and many other endearing characters.

I'll check in here when I can. The frequency will depend on how far ahead I am. My minimum goal is 2000 words a day.

Let's do this!

This baby, ladies and gentlemen!

Thursday, October 24, 2013

NaNoWriMo Prep

NaNoWriMo begins in one week. I won't be uploading the stories here, but I may share a little about them as I'm writing.

The freezer is full of homemade soups for quick reheating, and I'll be using the crock pot like a mad woman. This week, I'll do some bulk cooking in the form of burgers, chicken, and meatballs, which reheat well. I'll go to the store for mixed nuts so I'll have something to munch on during the day.

I will take Saturdays off, because I have local events on all four Saturdays in November. That means I'll have to work extra hard the rest of the days. It averages out to 2000 words a day (the absolute MINIMUM), if I take Thanksgiving off too (I probably will).

There are two NaNoWriMo meetups being planned! There is one on November 1st in Mobile, and one TBD on the Mississippi Coast. I hope I feel up to attending both group sessions.

The NaNo forums have been so helpful the past couple days. I have more pirate info and murder suggestions than I know what to do with, ha! If you want to keep track of my daily word count, I've installed a widget on the right side of the screen.

I've used Evernote for ideas and outlining, but I've decided to use Nisus Writer Pro for the book itself. It has a sidebar that includes spelling and grammar check, a thesaurus, and word count. It's fantastic. I'm ready to do this!

Sunday, October 20, 2013

Painted Bra Art Project Auction 2013

It's finally time! The charity auction that includes my painted bra begins at 8AM Central!

100% of the purchase price goes to the Liz Hurley Breast Cancer Fund and the Huntsville Hospital Foundation.

My entry last year raised $40...fingers crossed that the bids are higher this time!

Thanks again for the support! XO

Friday, October 18, 2013

I'm here...sort of.

I survived the Periodic Paralysis International Conference. It was a nice experience, and I'm glad I was able to go. I wasn't feeling well (I was downright sick, the car and all...yikes) but the important thing is I made it through. It was good to meet others who know what my life is like, and I appreciate the physicians who are working hard to understand this disease. I'm very grateful.

I gave them my blood, and it should be in Germany at this point. I hope to hear something from the researchers there in a few months. I've decided to invest in 23andMe as well, and I look forward to getting the results from that. I'm interested in seeing what my DNA says about me.

I'm still recovering from the trip. Very, very exhausted. I'll type out my notes from the conference and share them...eventually. For now, I'm trying to catch up on household chores in between naps and episodes, and I've resumed preparations for NaNoWriMo.

I wanted to ramble a bit more, but I'm having a hard time sitting up. Time for bed.

Talk soon,

Wednesday, October 9, 2013

MDA clinic update, and going to Orlando


Not really, but this week is insane:

Monday - went to Jackson, stayed overnight
Tuesday - MDA consult, went home
Wednesday - Walmart run, visited Mom, packed for Florida
Tomorrow/Thursday - Leave for Orlando, stay overnight somewhere half-way
Friday - Arrive in Orlando, Periodic Paralysis Conference begins
Saturday - Conference all day
Sunday - Conference end, genetic testing, leave Orlando and hopefully make it home by 11pm

MDA appointment went well, although my muscles were in bad, bad shape. So heavy I couldn't tie my own shoes, and pain was a 9...almost in tears. Had a good consult, and the MDA rep said she looks forward to hearing about the conference.

Pretty sure I have a sprained right hand, and lucky me, I'm as right-handed as it gets. I can do very little with my left. Doc thinks it's a Carpel Tunnel flair-up, but I twisted it pumping gas last week and still believe it's a sprain. I do know I have CTS, though, and either way, Dr. H wants me to wear a splint for six months. That's going to make NaNoWriMo if the contest isn't challenging enough. I'm not backing out, though, so that is that.

I've deactivated my Facebook account for now, but I'll be back soon (for those who are on my list). I've lost a lot of tolerance for the place lately, and need to make a change. I'm not sure what that will entail, but I imagine my blog readers won't be affected.

Prayers appreciated for a safe and productive trip to the conference. And again, I am so very grateful to those who helped make this possible.


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.