Saturday, August 29, 2015

Hurricane Katrina: 10 Years


I was going to post a heavy blog about the 10 year remembrance of Hurricane Katrina, which gutted my state's entire beautiful coastline. But I've decided not to do that.

Most of us have seen plenty of images.
Some of us saw the nightmare firsthand.
We lived it.

But more importantly, we lived through it.
We are survivors.

I'm proud of the Gulf Coast for its resiliency and restoration post-Katrina. We've proven our courage to not only survive, but thrive. As many of us were, I was changed and displaced, but I remained on the Gulf Coast and I'm glad I did.

No matter where life takes me, it will always be my home.

Wednesday, August 26, 2015

I Have Systemic Disease - An Open Letter of Awareness



I have systemic disease. That means every system of my body is broken in some way. I live with muscular dystrophy, chronic kidney disease, migraines, obstructive sleep apnea, sleep deprivation, musculoskeletal disease, depression, chronic fatigue, severe chronic pain that I never escape, and more.

It's terminal and irreversible, no matter what you think.
I'm not lazy or crazy, no matter what you think.
It has no effect on intelligence, no matter what you think.
I may be tired, but I'm not dumb, no matter what you think.

The next person to tell me to try harder or be positive, call me names, judge my life choices, or look at me like I'm some kind of freak may never fully recover from my reply. That sounds harsh, but I have to do whatever is necessary to protect myself. It took over 30 years to grow a backbone, and nobody's words, actions, or assumptions will take it away from me. I'm still a pushover at times, but I'm figuring this out as best as I can. I'm practically Bambi at birth, both physically and otherwise, awkwardly trying to keep my legs underneath me. It may seem ridiculous to you, but I'm going to stand even if I'm the only one standing.

I thrive in solitude, but I also admit that it is very hard doing this alone, and I am forever grateful to those who are standing with me. Not just today, or this week, or when I'm having a decent day, or when I'm agreeable. The turbulent times of unbearable pain, exhaustion, loneliness, grieving, and anger are when the strength, care, and grace of others are needed most, and I am so thankful for those who rise to the challenge. You don't have to, but you choose to, and I don't take it for granted.

We have awareness days and awareness weeks and awareness ribbons and awareness marathons, and that's all nice. But at the end of the day when the awareness ends, the battle still rages every minute of every day, forever. Those who suffer from chronic illness didn't sign up for this war. There is no pay and there are no benefits. There are no coffee breaks, no vacations, no "back to normal". This is normal. Sorry for the inconvenience, healthy folk, but this is it. No matter what you think. But in spite of our unfortunate high maintenance, I believe most of us don't expect miracles, want special treatment, or demand the unreasonable. I believe most of us only ask for the same kindness, consideration, and respect that anyone else does. Our bodies may have changed, but our value hasn't changed. Last time I checked, broken crayons still color the same.

I wanted to share all of this today in hopes of encouraging the cheering section to keep cheering, the caregivers to keep caring, and most of all, the warriors to keep fighting. Together, we can do this thing.

I love you all, even when I'm cranky. I love you all even when you're cranky too. Now let's group hug and kick this day's ass.



Thursday, August 20, 2015

Josh Duggar, Ladies and Gentlemen

I didn't talk about the Duggar molestation scandal here because it struck a nerve too deep to talk about it without anger, stress, or harsh speech. If you were following on Twitter or Facebook, you know how I feel about it. But I decided not to post my thoughts here.

This, however, is a different story.

Family Values Activist Josh Duggar Had a Paid Ashley Madison Account
(he had more than one, actually)
http://gawker.com/family-values-activist-josh-duggar-had-a-paid-ashley-ma-1725132091

Josh Duggar Admits to Cheating on Wife
http://www.hollywoodreporter.com/news/josh-duggar-cheated-wife-confesses-816596

"I am so ashamed of the double life that I have been living and am grieved for the hurt, pain and disgrace my sin has caused my wife and family, and most of all Jesus and all those who profess faith in Him."

Oh, yawn.

Newsflash, Josh Duggar: When you truly regret an action, you repent (the word means "to change or turn away from") and never do it again. You had no intention of stopping, because you kept doing it without confession or remorse. You not only lied and cheated, you stole. You may be the "bread-winner", but you stole from your wife and children. You stole that money when you gave it to a company that served your sickening addiction. You are a liar, a cheater, an abuser, and a thief.

You're not ashamed that you hurt your family, Josh. You're ashamed that you got caught. A forced confession based on undeniable evidence is not repentance. You would have kept doing it. You and I and anyone with half a brain knows that.

Allow me to amend your statement:

"I am so ashamed that I was caught living a double life. I am grieved that my sins were exposed, resulting in my wife, family, and the public finding out that I'm a hypocrite and a disgrace to all who know me. I am in pain because this happened to my family and me. Especially me."

You are a self-absorbed sex addict, and the sad truth is that most people like you are never cured by Jesus nor Psychology. You don't deserve the trust of one person around you, especially that of your wife and children, and no matter how much you apologize, you will never deserve it again. Those are the consequences you and only you have brought upon yourself.

I can only hope and pray that Anna does the right thing for her livelihood and the safety of those four children.

Thursday, August 13, 2015

FDA Approves Drug To Treat Familial Periodic Paralysis

I am so behind on everything, I am just now getting to this news:

Earlier this week, the FDA approved carbonic anhydrase inhibitor dichlorphenamide (KEVEYIS) for the treatment of all forms of Primary (Familial) Periodic Paralysis.

Thanks to the Muscular Dystrophy Association​, other Periodic Paralysis researchers, and study participants who made this possible.

Drug website is here: http://www.keveyis.com/

Drug info is here: http://sacdzn.com/clients/cambridge/taro/FINAL%20Approved%20Keveyis%20PI_%208.7.15.pdf

MDA Press Release is here: https://www.mda.org/media/press-releases/fda-approves-drug-primary-hyperkalemic-and-hypokalemic-periodic-paralysis

As for me, I am already on a different carbonic anhydrase inhibitor, acetazolamide (DIAMOX), but I will be discussing Keveyis with my doctors in a few weeks. My hope is that insurance will cover it and it will give me better function with fewer side effects.

I'll keep you posted.


(Cross posted on http://FightingHKPP.blogspot.com)

Wednesday, August 12, 2015

101 Days of Lovecraft


101 short stories
in 101 days

A spontaneous reading challenge by yours truly.

Occasionally being a part of the geek scene,
I've heard plenty about H.P. Lovecraft and
The Call of Cthulhu, but wasn't in the know.
That changes starting now.


Friday, July 31, 2015

My July, via Instagram







A photo posted by Gulf Coast Girl (@gulfcoaststudio) on




A photo posted by Gulf Coast Girl (@gulfcoaststudio) on






A photo posted by Gulf Coast Girl (@gulfcoaststudio) on


A photo posted by Gulf Coast Girl (@gulfcoaststudio) on




A photo posted by Gulf Coast Girl (@gulfcoaststudio) on


Would love to connect with you on Instagram. More to come.

Wednesday, July 29, 2015

Too Tired To Live

On my back in the middle of the bed,
on my side on the left side of the bed,
on my stomach sideways on the bed...
cannot get in any position and be comfortable. 
Up pacing the floor as I always do, now on the couch.
Will try lying on my back again with my head 
at the foot of the bed in a few minutes. 
Daily life with chronic pain, insomnia, and sleep deprivation.

Monday, July 27, 2015

How to utilize Facebook's new "See First" setting

I'm back on Facebook, and it's as crazy and unpredictable as ever. Facebook is like the weather, you know. If you don't like it, just wait an hour...it'll change.

At any rate, this new change may be a great one if it works properly.

It's a pretty common complaint that Facebook users don't see all of their friends on the news feed. It seems to be a random selection by FB minions, as opposed to simply clicking "follow" and seeing every post that person makes. You'd think that's how it would be, but it's not by a long shot.

However, they've created a new setting called "See First". Here it is:



I chose this setting on someone's profile last week. So far so good...that person's latest posts are showing up first in my news feed. I'm getting ready to give that setting to a couple hundred friends just to see what happens to my news feed from there. I'll edit this page if anything significant occurs that you should know about, but most likely it's going to do exactly what is expected and simply show me everyone's posts that I have asked to "see". Fingers crossed, anyway.

Hope this helps some folks.


Edit Note 7/31/15: Sadly, it's not working properly. In fact, this setting is working on one of my accounts, but not the other. Makes no sense. At any rate, you can only set it to "see first" a total of 30 people and pages. Just an FYI. Maybe they'll work out the bugs and I'll actually be able to utilize this feature consistently the way it was intended.

Speaking of Facebook, send your best wishes to the Zuckerbergs who are expecting their first child after suffering three miscarriages.

Thursday, July 23, 2015

The 1st Week of June + NOLA Time Fest (In Pictures)

I had Muscular Dystrophy clinic in Jackson on June 2nd.
It was an 8 hour round trip, and I managed to 
drive it in one day for the first time.
It didn't happen without drama, but I survived.
In a nutshell, they've done all they can do for me.
I'm supposed to be transferred to a clinic in 
New Orleans where they will continue to
document my condition and its progression.
As always, TMI can be found at Fighting HKPP.


I stopped at one of my favorite places to rest and eat.
Amazing food and nice folks in Hattiesburg, MS.

June 3rd: recovering from clinic.
The view from bed.
I had prescriptions to pick up,
so I had to put on clothes and drive.
My body was not okay with this plan.
Nor was my car. Flat tire.
I ended up at a shop, where I met this pup
who appeared to be having the same kind of day I was.

It was very warm outside. It was not a fun day.
They didn't have a tire to fit my car,
but they put the spare on for me and I went home.

June 4th, I was feeling worse. Really bad.
It was good timing, if there is such a thing
for feeling like death, as I had Internal Medicine
clinic that day. Dr. B and his nurse were not happy.
I have uncontrolled Hypovitaminosis D resulting
in the musculoskeletal disease Osteomalacia.
My kidneys are also failing, and my digestive
system is messed up to the point that an order was
written to check for cancer right then and there.
Cancer result was negative, as I stated in a previous blog.
Aggressive treatment ongoing for everything else, but so far 
it doesn't seem to be working. Or at least as expected.
I'll learn more at renal clinic in August, I guess.

June 5th, the car was serviced and I was rolling again.

June 6: My stubborn self crawled out of my sick bed
and drove to New Orleans for a Doctor Who convention
that I had been looking forward to for months.
NOLA Time Fest was on my bucket list,
so although exhausted and unwell, I went anyway.
The 2 hour and 10 minute drive turned into 4 hours
thanks to construction on the interstate.
Then I took a wrong turn at Albuquerque
and ended up on MLK Blvd being solicited by
a man trying to sell me a cell phone. (I declined, ha.)

I arrived to the venue overheated, tired, and stressed.
This is what my makeup originally looked like:


Holy meltdown of doom, Batman,
is that ever not how things ended up.
I was practically a declared disaster area.

Hello sick, swollen, melted TARDIS of fail.
Ha!

I laugh (thank God I can now), but I was miserable.
I tried very hard to cool down and be comfortable,
but I felt terrible and so out of my element.
I will be the first to admit that I have more issues
than Sports Illustrated, and one of those issues
is that I never feel like I belong anywhere I go.
When I arrived and felt like I shouldn't be there
I was pretty heartbroken over my regret.

I hid in the restroom's sitting area for a 
little while and took this stupid selfie 
because the dress that I will never wear again
as long as we both shall live will be
for sale for the low, low price of $20
very soon, probably on eBay.

(But wait! There's more!)

In all seriousness, things did get better.
I met a friend in person for the first time.
He's a wonderful human and I wish I could
clone him. I also met his gorgeous new wife.
I wish I hadn't been so ill, but I was happy
even if I was having a hard time showing it.

I also ran into a friend I've known since college.
He has seen my health plummet from being an
active college student to paralyzed in a wheelchair.
And through it all, he has always been so kind
and encouraging to me, even helping sponsor my
trip to Florida for genetic testing in 2013.
I'll never forget that, and when he gave me a hug
and said he was happy to see me up and around
it made such a difference because I knew that he
was the one person at this place who knew what
I had been through over the years and that the
fact that I was at Time Fest at all was a miracle. He
has no idea how much his presence helped me.

By then, it was time to check into my room.
I threw off the dress and yelled "never again!"
Ha!
I took a bath, put on something I could 
stand to be in (T-shirt and blue jeans, thanks),
gave myself a pep talk, and returned to the Fest.
After a panel, a friend who I call the fearless leader
said hi, and that was the breakthrough I needed.
(To myself: okay breathe. I can do this thing.
YES, I WILL DO THE THING!)


Okay, well, I hardly did all the things,
but I did have a nice time in spite of feeling
so badly. I was grateful to have booked
a room because I had to lie down a few times
and I needed oxygen for several hours.
Of course I was up at 4AM as always,
pacing the floor like I do, but at least I
was in a different place and had something to
look forward to that day - seeing some cool peeps
again and embracing their enthusiasm, even if I
did have to use a walker and a neck pillow and
spend my energy focusing on my next breath
instead of playing games or interacting with people.
 I was grateful.











































I am grateful, still.
As turbulent as I was,
I'm so glad I went.

I don't think many of these folks get how much they
make an impact. I've been a passionate geek all my life
and while I'm a bashful introvert, I just love passionate people
and it's hard to find anyone more passionate than a geek.
And though I don't feel like I belong in the world at times,
I figure this is probably as close as I'll ever get.
Life is too damn short. I'm going to hold on to every
good person, good minute, and good memory I encounter.

Time is precious, folks. Spend it wisely.