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)