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

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!

Thursday, August 22, 2013

HKPP Case Study Article

http://www.midlevelu.com/blog/case-study-week-hypokalemic-periodic-paralysis

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)

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)

http://www.wlox.com/story/23024317/gautier-mall-tenants-get-lease-termination-letters-to-move-out

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.