Sunday, January 31, 2016

Etsy Relaunch

My Etsy shop has reopened with limited stock.

Check it out here! :)

Thursday, January 28, 2016

January Medical Update

I saw my new eye doctor on the 26th. He was outstanding, and I intend to keep him forever. My eyes haven't worsened, thankfully. I'm still bat-blind without lenses of course, but I see pretty well with them (about 20/50). My eye muscles are weak, which could be contributing to not seeing 20/20, or I could have permanent damage from the scratched corneas I obtained about 14 years ago. There's really no way to know for sure, I guess. I have a script for Restasis for chronic dry eye, but I have to wait to find out if it's safe to use (steroids are a dangerous no-no with HKPP, but eye drops may not be an issue...we'll see). I picked out new purple glasses, and I will begin a contact lens trial after my current migraine resolves.

Next up is Internal Medicine clinic, which is in February. I'll have bloodwork to look at my BMP and kidney function again, but I don't anticipate any other drama (famous last words, knowing me). I pushed MDA and Renal clinics to May 3rd through 5th, but as it stands right now, I am neither physically nor financially able to go to Jackson. If this changes by May, I'll go. If not, I'll have to cancel until I see improvement in these areas. I don't have a choice.

Winter is very hard on me, and I look forward to warmer, less painful, more functional days. In spite of how difficult 2016 has been so far, I'm counting my blessings.

(cross posted on Fighting HKPP as usual)

Sunday, January 24, 2016

The rest of the month: a to-do list

LJ and G+ out (done)
Tumblr in (done)
Twitter lists renovated (done and private account deleted)
Stay off of Facebook till at least Monday (done)
Hide or delete some blogs (done)
Update others (done)
Move one to Tumblr (in progress - this will take several days)
Pin at least 10 photos a day on Pinterest (ongoing)
Decide what to do with My Fitness Pal (decided to stay)
Reopen Etsy shop (done)
Sort and scan important paperwork (moved to February because reasons)
Finish cleaning house for upcoming inspection (done)
Go to the doctor (done)

If I manage to accomplish all of that, I will reward myself with admission to the Chocolate Festival in February (a whopping 4 bucks).

Nothing to see here, just trying to hold myself accountable. I'm one of those crazy list people. In fact, lists are really the only reason I get anything accomplished.

Happy Sunday.

(List updated 1/31 6:28pm)

Friday, January 22, 2016

No Words

A Facebook friend unexpectedly passed away.

I've pretty much had all of 2016 I can take at the moment. I'm going to go to bed and pull the covers over my head.

Monday, January 18, 2016

Another great artist gone. Screw you, January.

A painful goodbye to one of the best singer/songwriters in American history.
RIP Glenn Frey. You were a favorite. Thank you for your incredible songs.

January Stream of Consciousness

It is supposedly 77 degrees in my apartment right now, and I'm still freezing thanks to Muscular Dystrophy.

I was supposed to update my HKPP blog weeks ago, but I still haven't because I don't want to relive that horrible episode I had in December.

I'm proud of myself for learning to cook in spite of my limitations, and I look forward to learning so much more.

I weighed myself yesterday, and I'm hoping to somehow lose 15 pounds by my birthday in late March. If not then, certainly by no later than my high school 20 year reunion.

It boggles my mind that I'm at that milestone, as I still remember when my mother was invited to HER high school 20 year reunion.

I've been under the weather all winter so far. Not a happy camper, but I'm trying not to completely lose my patience (TOO LATE! GRRRR, WINTER. RAWR).

I don't know how people with systemic disease who live north of here survive. I really don't.

I joined Trek Class (as in Star Trek) last year via Syracuse Mass Open Online, but I'm just now getting started on the course. I marathoned the original series until I absolutely couldn't stand another minute. It was awful. Thankfully, I've moved on to more recent serials. I grew up on The Next Generation, and beyond, and they are a breath of fresh air in comparison to the offensively sexist and misogynistic original. Many fantastic characters, and much nostalgia from my middle and high school years. Thank God for Patrick Stewart. I love that man.

(I admit I bought a Tribble, though, at Geekonomicon. It even squeaks. It's adorable.)

Apartment inspection is coming up already (every two to three months), so I'm slowly trying to tidy up the place. It's never a complete wreck, but I would prefer it to be as presentable as possible. I made a huge dent in the laundry (not having a W/D in my place is such a pain) and cleaned the fridge yesterday. Today, I'll put away all of the linens and dishes and start sorting through paperwork that's currently scattered about. At some point during the week, I'll sweep and mop the floors. Having HKPP means having to carefully pace myself, lest I have another episode like the one I had in December (doing the same thing...overactivity around the apartment). My situation is highly frustrating and unpredictable, but all I can do is take precaution and hope for the best.

I have several clinics coming up that I am not ready for, as I am not in good enough shape to make the road trip. I guess I'll have to reschedule them to sometime in the Spring, as I anticipate being stronger when it's warmer. Sure hope so, anyway. Come to think of it, I don't even have the funds so I would have had to reschedule regardless. I've got to figure this out...

I'm making an effort to divide my time online a little more evenly, which means taking breaks from Facebook to focus more on other sites. I have almost 4000 followers on Pinterest and I'm rarely there anymore. I need to change that. I also want to make sure I stay up to date on my blogs, and catch up on Instagram, Twitter, My Fitness Pal, and other sites. I'm still on Ask, if anyone cares. I've given myself a deadline of the 25th to reopen my Etsy shop, so the pressure is on there. (P.S. I hate deadlines.)

I finally chose a pen name for writings that I wish to remain anonymous, and I created an email address as well as a Tumblr with that name. It is absolutely nothing like my real name, and came to me out of nowhere. I'm learning how to use Tumblr, and I will eventually share the link...but not yet. I need to keep things private for now.

This turned into more than a stream of consciousness, I think, but whatever.

It's 1:35 in the morning. Time for Zs.

Saturday, January 16, 2016

Heartbreaking Week

Man, 2016, what on Earth are you doing to us? David Bowie, Brian Bedford, and my (and so many others') beloved Alan Rickman gone in the same week. The world of entertainment is crushed and countless hearts are grieving, as hearts do and should. We're designed to process the loss of those who made an impact on the world. Even if we never met the person, that fact is irrelevant (I'm talking to you, cynics...get over yourselves), and it's more than ok to cry and feel sad that they're gone. It hurts when someone's talent touches your life and that someone is taken away. The pain is real.

I guess it helps a little to know we're not feeling this way alone. We can at least take solace in that.

Sunday, January 10, 2016

Sadie turns one!

Aunt Kelli's sweet pea turned a year old on the 6th!
I was too weak to drive, but I thankfully carpooled
to Louisiana to attend her birthday party on the 9th.
I don't have permission to blog others' pics (I haven't asked),
but I took these few myself, so thought I'd share.

She's such a sweet baby, and I'm so happy she's with us.

Friday, January 8, 2016

Diet Talk

Time to get back on track after holiday eating!

My diet is supposed to be high protein low carb moderate fat, most similar to the MIND (Mediterranean-DASH) diet. I'm forced to modify it to eliminate wine (alcohol = paralysis), and I can't eat grains (of any kind) three times a day without a problem. I try to limit grains to two servings or less a day. I also have to be cautious of fructose, but I can usually get away with blueberries or strawberries if no sugar is added. Most other fruits are off limits (that does not include tomatoes or avocados, which I rebelliously count as vegetables). I eat a lot of beans and peas, occasional greens (not daily, because kidney stones), and I have not been able to give up cheese. I don't know if I ever will, to be honest, but I have reduced it. I use olive oil or grapeseed oil when I cook. My goal is usually chicken 3 days a week, seafood one day a week, beef one day a week, and a meatless day, with the 7th day being a cheat day to eat whatever I want. I limit pork to a couple of times a month now. I haven't perfected this by any means, but I've been working on it for a while.

One of my goals for the new year is to not bring another ounce of pasta or another Coca-Cola into the house. I still need to work on my candy intake. I shouldn't be eating it at all, needless to say. I'm sitting here shaming myself about it as I type, because I have no excuse. I'm a work in progress.

This diet is appropriate for most people with neuromuscular disease (again, careful with alcohol and grains, and talk to your doctor), but it's not the best diet for chronic kidney disease. Unfortunately, I have to choose between saving one or the other. I choose the muscles for obvious reasons (I'd like to be able to move, please and thanks).

Thursday, December 31, 2015

2015 Goal Review, and Looking Ahead to 2016

The end of year already...crazy. If you've been reading more than 12 months, you know the drill. It took me a while to post my goals for 2015, but I'm feeling somewhat optimistic. Let's see how I did:

2015 Goals

1. Produce artwork for charity

That last one sold for $400. It was a mind-blowing moment.

2. Put a huge dent in my manuscript(s)

I made a lot of progress on my novel, which was the goal.
I have a pretty long way to go still, but I intend to finish the 1st draft in 2016.

3. Cook one dish out of every cookbook I own

This was my biggest fail, I think. I did utilize some of the cookbooks, but I didn't make something from every one of them. There's really no excuse, as I cooked like a maniac this year. I could say that it wasn't feasible financially, but it was mostly a matter of poor planning. So boohiss on me. It's going on my 2016 list, and it will happen.

4. Attend at least two conventions

5. Renovate my website

Pretty much done, although all I did was revert back to basic Blogger templates. I'm happy with my decision for now. People have asked why I haven't moved to Wordpress yet, but I'm fairly partial to Google products. I have to say my reader base grew by leaps and bounds when I moved from Geocities (yes, Yahoo Geocities, kids!) to Livejournal (which is dead as a doornail), and now Google Blogger as of seven years now. I've had over 150,000 hits on my blogs since I installed the counter in late 2009. It was a good move, and I'm not fixing what isn't broken.

As always, thanks for being here. I appreciate my readers.

6. Read a classic novel

Not quite long enough to be considered a novel, but The Little Prince by Antoine de Saint-Exupery is a story that I had never read before, believe it or not. I had heard so much about it, and when I found the book at a thrift store, I happily grabbed it. It is very touching, and forces you to think about the world and its varying perspectives. As others have claimed, I did shed a tear at the end.

7. Goal weight: 155 lbs

Grrrr. Okay, I have to give myself some credit. I did lose some weight, which is a heck of a lot better than gaining. In fact, I lost right at 10 pounds. It's not goal weight, but a step in the right direction. This will stay on the list until I achieve it and learn to maintain it.

Lo, and behold...I'm ready this year! Drum roll please - the new list!

2016 Goals

*Cook one dish out of every cookbook I own.
*Do not bring Coca-Cola into the house! Pasta either!
*Complete all art projects currently in progress.
*Be less wasteful and more productive with my time.
*For the love of God...achieve goal weight already.

A little lagniappe for you:

Favorite book of 2015: The Little Prince by Antoine de Saint-Exupery
Favorite blog of 2015: Brain Pickings (by a MILE)
Favorite album of 2015: Beneath the Skin by Of Monsters and Men
Favorite show of 2015: Doctor Who (of course)
Favorite moment of 2015: Meeting my Sweet Pea - Sadie Nicole!

This was a weird year. Unique. A bit rocky. Definitely a roller coaster. I moved into public housing for the first time, and while I could not be happier to finally live alone (hallelujah!!!!!!), the finality of my no-win circumstances threw me into a pit of loneliness and depression that I was not expecting. I've had some pretty difficult moments, honestly. If you've followed closely, you know I also had a hard time blogging this year, although I did eventually catch up. I just couldn't seem to spit out the words I wanted to say. Not sure I can now, even, but I'm trying. I hate to report that my verbal communication hasn't been any better. Completing sentences is more challenging than usual these days, and it is very frustrating. I know HKPP and CKD are the culprits behind this, but also severe sleep deprivation. I started on pressurized oxygen this year, and it helps me to breathe, but not to sleep as hoped. I pray for a solution, lest I drop dead in my 30s from lack of rest. Sometimes, I think it's really going to happen. But here I am, still kicking. I guess there are advantages to being stubborn.

I've lost and/or said goodbye to a few friends this year, but gained some new ones. I'm so glad to know them, and I'm thankful that they accept me for who I am. They've taught me a lot already, and I hope we're friends for life. Of course, the greatest addition to my life this year is my Sadie. Sorry adults, babies win. :) And I love that child with my entire heart and soul, as I do her sister Zoey and cousin Jo. I look forward to seeing these children grow up, God willing. I think about their future sometimes, and I don't see myself there, but I have every intention of defying that vision. Systemic disease be damned, I'm so freaking tired and have little to live for, but those babies are worth the battle.

In spite of the struggle, I look forward to days ahead. 2016, let's do this.

Sunday, December 27, 2015

Christmas 2015

It was an unusually warm Christmas on the Gulf Coast.
Eighty degrees and humid!
Christmas Eeyore watching the neighbor kids play.

But you know what they say about the weather.
"Just give it a few minutes. It'll change."

I had a serious paralytic episode before Christmas.
I haven't blogged about it yet, but I will eventually
over on the HKPP blog.
At any rate, I was relieved to be mobile again by
Christmas morning. I couldn't drive, but I carpooled to rural
Alabama for festivities with my brother, sis in law, and her family.

Like a good Creole-Cajun, I made dirty rice.

I'm not a baker, but these cookie bars turned out well.

SWOON! These lemon cookies turned out REALLY well.

I'm not big on material things, but I received so many
lovely gifts from all over the country.
My Amazon wish list was bombarded by friends this year.
My heart is full.
Awesomeness from my friends at Whovians of the Gulf Coast!

I wear knee-high socks year-round thanks to Muscular Dystrophy.

These supplements are a vital part of my Muscular Dystrophy regimen.
Insurance doesn't pay for them because they're over the counter.
Very thankful to have received enough to last a year.

The holidays aren't always easy, but I had a nice Christmas.

I'm thankful.

Monday, December 21, 2015

Geekonomicon 2015

Surprisingly, I've never drawn a TARDIS
so I'll be drawing that last photo soon, as well as others.

In spite of being extremely sleep-deprived and in horrendous pain, I had an absolute blast. I'm so glad I managed to go all three days, running on about five hours total sleep. My cognition suffered greatly and I had a difficult time spitting out correct and complete sentences. It was frustrating, but I made a tremendous effort to stay upbeat and friendly. I was told that I seemed happy, and while I could have easily said "If you only knew my misery", my response was "Yes, I am very happy to be here." And it was the truth. I had been looking forward to this weekend all year, and although I had a couple of rough moments, I was glad to be hanging out with my Whovian peeps from Mississippi and Louisiana. Such cool people, all of them. I'm blessed to call them friends, and I hope they know how much their acceptance of me has made a positive impact on my life.

You already know about this if you're on my Facebook, but I had an experience at the con that was quite unexpected. On Friday, I attended a couple of writer's panels. After asking several questions during the Q&A, two guests on the panel, a published author and an editor/publisher, asked to read some of my work. I returned on Saturday and gave them Chapter 1 of The Children of Mossy Hollow. I thought I was going to be sick I was so nervous, and I still can't believe I gave complete strangers a piece of my soul. On Sunday, I met with the author again. She asked me if I was scared about giving her my story. "Terrified" was my response. She smiled and said "You shouldn't be. You are a step ahead of almost everyone who has ever given me their work. You have absolutely nothing to worry about." She gave me her editor's contact info and said "I know it's scary, but don't be scared. I promise you have nothing to worry about. You're in really good shape here...a cut above the rest." I bought one of her novels. Inside it, she wrote "To Kelli - KEEP WRITING!!! And I can't wait to read more!" I walked away teary-eyed and nauseated. That was the first time I had ever let a stranger beta read my work, and my nerves were wrecked. It was humbling and unforgettable. 

I guess I have a novel to finish now.

Indy 500 the rolling walker was a god-send, as usual. I wouldn't be able to do things like this without the walker. I get aggravated over it sometimes, but I'm really grateful to have it. I don't take what little mobility I have for granted. I'm hoping I'll be able to attend two or three conventions next year. We'll see.

My body unfortunately revolted against me a few days later in a very big way. I'm still recovering from the worst HKPP episode I've had in a couple of years. It was potentially catastrophic, and I feel very lucky to be okay. I will write about it on my medical blog soon and notify readers here.

December has zoomed by...Christmas is already upon us. Hope you're all having a fantastic holiday season.