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 ugottafriend.com 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 worry...it's not ALL going to be Doctor Who stuff (but some of it will...I'm just saying...deal 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!

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, actually...in 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 interesting...as 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 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.

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.

Thursday, August 29, 2013


So...I received a mysterious package in the mail.


Top Secret Toilet Paper.

This is my life.

Tuesday, August 27, 2013

2013 Painted Bra Art Project Complete

I'm very happy with how this turned out.

It was difficult, especially with my weak arms and hands,
but what a small sacrifice for breast cancer awareness.

I've submitted it to The Painted Bra Art Project.

I'll keep you posted on the auction details!

Sunday, August 25, 2013

Burger Week - Day 5: Pizza Passion

Not a bad ending to Burger Week! Pizza has always been a passion, as you will soon see when I launch a new "week" of flatbreads. But for now, here is a big honking pizza burger.

Kaiser roll
5oz (approx) ground round
1/3 cup shredded mozzarella
3 or 4 slices pepperoni
1 or 2 tbsp of your favorite pizza sauce

Meat Seasoning:
Kosher salt
Pepper (black or white)
Dried oregano
Dried basil
Dried parsley

Use fresh herbs if you like, but dried mixes well with the meat for more even flavoring. Once I cooked the burger and toasted the kaiser roll, I transferred everything to non-stick foil and broiled it for a few minutes in the oven. The pepperoni really gave this burger a kick, and was a great complement. Use fresh mozzarella if you prefer...I admit it's even more amazing that way but I didn't have any on hand at the time.

The Burger Week archive can be found HERE.
The most popular one so far via internet is definitely the Spicy Sloppy Joe. My personal favorite of the five: Classic Bacon Cheddar Melt.

I hope you try some of these recipes, and love them!

Friday, August 23, 2013

Burger Week - Day 4: Mediterranean Magic


I've never seen this before, but with Mediterranean food being among my absolute favorites, I decided to create this monster. Glad I did!

Kaiser roll
5 oz (approx) ground round
OR ground lamb
OR a combo of the two
Feta cheese
Roasted red pepper hummus

Kosher salt
Black pepper
Lemon peel
Garlic powder

One of the most flavorful burgers I've ever made, for sure.

Thursday, August 22, 2013

HKPP Case Study Article


I ran across this article by accident. A nurse practitioner diagnosed HKPP in an 18 year old male who arrived in the ER unable to walk. He was lucky (I say that ironically) that his potassium was so low. Otherwise, they may not have known what was going on or believed him at all.

I'm glad the NP acknowledges that it's hard to diagnose HKPP because potassium doesn't always fall below "normal". I am one of those people, and the fact that my potassium doesn't always drastically fall out of "textbook" range is why I was untreated and mistreated for so many years. I am permanently weak at a younger than average age because of this.

I hope people will continue to bring awareness of all of the facets of this rare disease, so everyone who has it will be diagnosed and treated properly.

(Cross-posted to my medical blog at The Fight Against Hypokalemic Periodic Paralysis)

Sunday, August 18, 2013


Rain rain go away. Why must you torture me every day? Ha. Yeah, it's raining every single day on the Gulf Coast, and at the moment we're dealing with some especially tropical weather. Temperature and barometric pressure fluctuations do a serious number on people with HKPP, so this summer has not been a tiptoe through the tulips, that is for sure. I feel bad for those who are getting flooded out of their homes, businesses, and vehicles (lots of flooded/stranded people in cars in the news today). Mama NayNay sure is merciless sometimes.

I've delete my Food Network Star blog from this year, if you happen to notice it's missing. I am very happy for Damaris and I'm glad she won. I deleted it because I am very hurt by this article in which Alton Brown states that he chose a favorite among Team Alton (2012, Season 8) in the beginning of the competition, and ensured that his favorite made it to the finals by "using the others as sandbags". What the HELL? In case you missed the memo, a mentor helps everyone under them with integrity and fairness, not chooses a favorite and throws the rest under the bus. That would be called cheating. Dammit, Alton, I am so angry at you.

I have disagreed with him on many less important things, and loved him anyway, but this just isn't acceptable. I loathe disloyalty. I feel wounded, so I can only imagine how my friends from Team Alton feel (they are aware...it has been discussed). I've have never been so upset with Alton or with Food Network in the decade + that I have followed. I may always care about him but I will never trust him or the network's competitions again, so I don't think there is any point in actively supporting. I let FN know how I felt, shed a tear or two, and I'm done. I will decide what to do about the Team Alton blogs from last year after I cool down.

On top of that BS, a close friend of many years has been found a manipulator and a thief. After she stole from me and I discovered that one of my best friends had also been stolen from, I removed this person completely from my life. It is almost like a death, but I can't allow dishonest people to affect me any longer. I am such a patient and fiercely loving person, but even I have to draw the line somewhere. Such a disheartening month August has been. September will be better, I am sure of it.

In other news (you're welcome)...

I resumed burger week, but day 3 is backdated to where it was intended to be (I had a temporary post saying "coming soon", if you remember). I will post days 4 and 5 in real time.

I officially joined NaNoWriMo, and plan to give it a try when November rolls around. Being a non-fiction nerd, writing 50,000 words of fiction will be very challenging. If you are a NaNo participant, feel free to add me as a buddy @ ugottafriend.

It's almost time for The Painted Bra Art Project again, and my design this year is a tangle:

I'll post the final product when it's complete.

I'll also post pics from my storage room soon. I found some cool stuff from childhood.

Hoping to get into a government subsidized apartment in the next year or so. Lots of paperwork to do and sanity to keep intact somehow. It is depressing beyond words to be owned like a prisoner, but I do look forward to living alone someday...assuming I don't die in poverty. Wish me luck, say a prayer, think happy thoughts...whatever you can spare is appreciated.

Thanks for letting me rant and ramble, internet. Good night.

Saturday, August 10, 2013

EPIC FAIL. (8/10/13)

Welcome to the August 10th edition of Kelli's Epic Fail:

Woke up and read that a farmer's market would be open today.
Drove there and found 4 booths, none of which sold produce.
Saw I was almost out of gas.
Stopped at the gas station.
Couldn't find my debit card nor my cash.
Realized I left it all on my dresser at home.
Knew I'd never make it home with my car almost out of gas.
Contemplated who to call to come to my rescue.
Oops, I have no phone either!
It's on the dresser with the debit card and the money.
Surely I could make it a few miles over the bridge to my bank.
Son of a biscuit eater, it's Saturday.
Now counting dimes and pennies in the car.
"Yes sir, $2.30 on pump four...sorry about all the change."
Home, with nothing to show for the last hour.

This epic fail has been brought to you by Kelli. Tune in next week to read about her next inevitable epic fail. Same bat time...same bat channel.

Friday, August 9, 2013

Goodbye, Singing River (A Mississippi Mall Story)


Thirty-three year old Singing River Mall in Gautier, Mississippi prepares for demolition, where a 390,000 square foot open air mall will arise in its place. While this should bring in much-needed revenue to the small town, south Mississippi residents have mixed feelings about local businesses being evicted in favor of a new shopping center which will include yet another Walmart. I have a few feelings of my own, as this establishment provides a flood of memories of my childhood and beyond.

Singing River Mall was practically my second home. When I was a little girl, my mom, grandmother, and I would buy a Mary Ann's ice cream bar or a Dough Rollers giant cinnamon roll and "people watch" on the bench in front of Service Merchandise. We used to show up before the doors opened in the morning, and we didn't leave until it was closed at night. With people from all walks of life in the 1980s to be seen, rarely a dull moment ensued.

As a middle-schooler, I spent every weekend in Yesterdays game room, later known as Power Play. My favorite: Teenage Mutant Ninja Turtles (Donatello, if you're wondering). I remember being overwhelmed when redemption games were brought in, especially when they installed Ski Ball. I was terrible at Ski Ball, but I had fun trying. A few years later, I found myself working in that very arcade. It was surreal to be behind the scenes after being a loyal customer for so long. My brother was jealous, and I am still undisputed air hockey champ, thank you very much.

Shortly after leaving Power Play, I spent a week in Chick Fil A training. Nice people, but my puny arms weren't strong enough to handle their cooking equipment, so I had to quit. I eventually moved on to sell computers, appliances, and electronics at Cowboy Maloney's Electric City. It proved to be the biggest mistake of my life, but that's another story.

I befriended many of the store managers, studied health and alternative medicine at GNC on my lunch breaks, bought dozens of Beanie Babies at Coach House Gifts, saw epic movies at the theater, turned down dates and job offers, and power-walked the mall for exercise more times than I could ever guess. My last two relationships could be blamed on this place, since it's where I met them, and I gained a few pounds when La Fiesta Brava debuted down the hall from my job. It was my first experience with authentic Mexican food.

On a December evening, I had to be carried out of the building by co-workers when I collapsed after standing on my feet a little too long. I credit this incident, which followed a decade of symptoms and mistreatment, in finally receiving a diagnosis of systemic disease, including Familial Periodic Paralysis. I returned to work, but it was a struggle. My life was being redefined by this rare form of muscular dystrophy, and I eventually resigned and moved away.

When I heard that my favorite old stomping ground was meeting its doom, I made my way to Gautier for one last visit. With my trusty rolling walker in tow, I snapped a few photos and reflected on days gone by. The mall and I being almost the same age, we sort of grew up together. And as life has always been quick to inform, change happens whether you like it or not.

Yes, we had quite a history together - some good, bad, and ugly. While its end is not a surprise thanks to the area's economic battles, it is bittersweet to see it erased and replaced. I guess you could say it's being redefined, and I certainly know a little something about that. To the friends I made, the jerks I met, the many things I learned, and the moments I won't forget at Singing River Mall...farewell.

Tuesday, August 6, 2013

Hidden Treasure

I have been devastated for 8 years over thinking that I lost this medal in Hurricane Katrina. Even while sorting through things in storage for the past 2 weeks, it was on my mind. I tackled a box today that contained items that were salvaged after the storm, but hadn't been touched since then. I had no clue what I'd find, but didn't think any of it would be sentimental.

I had considered many times writing Skills USA (VICA) and asking if there was any possibility of a replacement, but I never found the nerve because I thought they would say no.
Representing Pascagoula, Mississippi in VICA State Competition was one of the most incredible moments of my life. At the age of sixteen, I finally felt like I was good at something. I had discovered my niche. I wanted to work in the field of Graphic Arts and Commercial Printing all my life, but my dream was cut short only a few months later thanks to Periodic Paralysis.
I was so shocked and thankful when I ran across it, I burst into hard, ugly sobs to the point that I thought I might collapse. I don't cry often but I'm exhausted from crying over finding this treasure. The medal means a lot to me and I regretted so much that it was gone. I can't believe it was in the bottom of a box all this time. It is badly tarnished and molded from flood water and sewage, but I hope I will be able to have it restored someday. When I do, I'm getting it professionally framed.
 Now I'm crying all over again. I'm going to go send a card to my Graphic & Print Instructor now.

Saturday, August 3, 2013

Migraine meds a no-go...definitely.

I regret taking Zomig so much right now. After only one pill, I had an episode...slumped over literally pinned to the bed unable to move. Four hours later, was able to get up and do a Frankenstein walk to the restroom (8 feet from my bed), and almost couldn't open my mouth enough to swallow my emergency liquid potassium at bedside. At some point, I said in my mind "I really don't want to die today, God". Dramatic, but whatever. I meant it. I fell asleep for a few hours. I'm still moving in slow-motion and it's been over 9 hours since it started. I feel like I just came out of anesthesia. I feel every muscle in my body and I cringe with every movement, even hurts to breathe. I would have blogged earlier but I couldn't keep my eyes open or type. I still can't open my mouth enough to do more than sip liquid K.

P.S. - And I still have a damn migraine.

Thursday, August 1, 2013

Local Clinic Update 8-1-13

The clinic had no explanation for the mistake made on my Inspra script (see last medical update if you don't know what I'm talking about), but they called the pharmacy and worked it out. Now I'm back up to 100mg a day, although I am supposed to be on 200. I'll have to wait till I see Dr. F in November, then Dr. B again in December before it will be increased again. At that point, I will be back to where I was supposed to be nearly a year prior. Lord, this has been so frustrating.

In other news, Dr. B wants me to try something...anything...to deal with the constant migraines and tremendous lack of sleep. As those with HKPP know, the meds he prescribed for this (migraine med and a tricyclic) probably won't go well and I expect to have to discontinue them quickly. Maybe I'll get lucky, but history proves that these type of meds cause serious HKPP symptoms in me. We'll see. I start them tomorrow night.

He had no answers for my ailing right kidney. No infection shown, but he put his hand on my back and I nearly jumped off the table. No clue what the thing is up to, but it's giving me a lot of grief at the moment. Maybe the meds I start tomorrow will help a bit.

If you're confused, I don't blame you. Here's the rundown:

Dr. F is Nephrology and Internal Medicine. He and the doctors at the MDA clinic are in Jackson, MS. I see them several times a year and consider them my primary physicians.
Dr. B is local. He's Internal Medicine and runs a low-income clinic where I receive medication assistance. I have to take my scripts from Dr. F to Dr. B, who has a program for people like me who can't afford their medications. He has decades of experience and is widely respected. He has read about Periodic Paralysis, but I am the first person he has met with the condition.

All of my docs couldn't be nicer, and I'm grateful. I believe they are doing their best, and that's all I can ask for.

Ugottafriend.com Q&A

I've added a public Q&A to my sidebar, so feel free to check it out. It's also on my main page at Gulf Coast Girl. Ask me anything! Just be aware that it's public, and if you troll me, your question will never see the light of day. Thank you. :)

I can't decide what hurts worse right now - my migraine or my right kidney. I had an ultrasound last week but haven't heard the results. I have a local doc appointment today. Wish me luck.

Saturday, July 27, 2013

Operation 2013: Operation Organization Update


It seems to be taking forever, but I'm finally making huge progress in organizing my life. You would be shocked to know how much I've gotten accomplished in the storage room this week. I assembled bookshelves Thursday and Friday, and moved all of my school textbooks and VHS tapes there. That's right...VHS, kids! My arms and hands paralyzed after the effort, as I expected, and they're still weak over a day later, but I don't care right now. I'm just glad it's done.

Now I'm going through my old belongings...stuff from years ago...to see what I can throw away, give away, sell, etc. I want to take as less as I can stand to wherever it is I'm moving to eventually. Since it will be a section 8 apartment, I don't expect to have room to store much. No earthly idea what I will do with all of my Bob Ross style paintings yet. There are dozens that I need to find homes for. I also have big boxes of clothes for Goodwill, but no clue how I'll get them there.

I'm pleasantly surprised at what I've found in boxes that I thought I lost in Hurricane Katrina. Thankfully, some things from my childhood and teen years were boxed up and in my aunt's garage. This is what I'm looking at now. I forgot I had so many books. A few collectibles made it through the storm as well. I'll take pics soon so I can show you some of this stuff. Stay tuned.

Monday, July 22, 2013

URL finally working?

Hi all, just wanted to mention that my URL at ugottafriend.com was down due to user error (big fat surprise), but it should be up and running fine now. As always, you can reach this blog via Google Blogger at ugottafriend.blogspot.com, but it is supposed to redirect to ugottafriend.com.

For future reference: if you try to get here via ugottafriend.com and it does not work, please feel free to let me know at ugottafriend4life@gmail.com and I will check things out.

That's all I have for now. Talk to ya soon.

Saturday, July 20, 2013

Monday, July 15, 2013

Renal Clinic July 2013, and Circumstances

I'm frustrated about my latest appointment. I was doing okay until the nurse discovered that my Inspra script wasn't filled correctly, which means I've been taking much less than I what I was prescribed. I have no idea how it happened, but I'm so mad at myself for not noticing that the dosage was wrong. With a migraine and running on 2 hours sleep, this news derailed me. Dr. F wants me to titrate the Inspra, so the script was rewritten for less than what I would have been on, and Medicaid doesn't pay for it so I have to take it to my local doc office and apply for patient assistance. That will take another several weeks. I'm upset that I'm going to lose another 1/3 year (next appointment is in 4 months) of potential quality of life that I could have gained had the script been correct to begin with.

I am so grateful to friends for getting me to the appointment on such short notice. Finding a way to Jackson is getting harder, and it is extra stress that I don't need. I have an ultrasound on the 24th with no transportation as of today.

Dr. F wants me to start using the Cardy meter regularly again, so I'll have to invest in the calibration solutions soon ($88 plus shipping...ouch). My potassium continues to fluctuate daily.

Although my weakness is profound, everyone said I'm doing better where the paralysis is concerned, so I'm trying to slap on a smile. I met a new doc in training (Dr. H), and he was nice. He agreed that I basically have to choose my own poison. I can follow a muscular dystrophy diet or a kidney disease diet. They contradict each other, so it's a no-win situation. He's not familiar with Primary HKPP and I wouldn't have expected him to be. No big deal. He and Dr. F both seem like sweet people, and I'm thankful they are trying.

I wanted to bring up several things, but I didn't go through my list at all. By the time three doctors were in the room, I just wanted to go home. I came across as obnoxious, I think, although that is never my intention. I'm just tired, agitated, in a lot of pain, and understandably afraid of my future as a single, disabled, chronically ill woman with no income and no relief in sight. I'm a level-headed person, but Grace has never been my name, and it probably never will be.

I'm going to talk to Social Security soon about any possibility under the sun of finishing college online through federal financial aid. I expect them to say no, but I want it in writing. To be stuck here unable to care for myself, watching life waste away, relying on people around me for everything is not living. I don't have a prayer if I don't figure out something.

I'll continue open courseware regardless. I've downloaded some courses from MIT and I'm diving back into Psychology, Social Studies, and Art Therapy as soon as possible.

I will never accept the way things are at this moment. I will continue to fight for a life worth living.

Tuesday, July 9, 2013

Systemic disease does not comply

I really should have known better than to schedule a week of cooking. In my stubborn mind, I think I can do it, but my body always proves otherwise.

There's a good chance that I'll have to ditch the kaiser rolls (carbs and sodium are a problem), but in some form or fashion, I'll resume "burger week" as soon as I can. I've been down for the past several days. It's a good thing I do some bulk cooking sometimes, because there are days when having leftovers in the freezer is the only reason I eat.

Renal clinic is Thursday in Jackson.