Sunday, July 26, 2009

I am not well.

I'm getting worse.

My family asked that I file for SS Disability again.

They see that I'm going downhill.

Yet they have no clue how hard this really is.

In horrible pain 24/7/365...I never escape it.

I am so weak that I can barely use my arms and legs sometimes. I almost didn't make it up and down the steps tonight.

I waited till I got home to cry.

I don't know what to do.

I've made a doc appointment to discuss my options...again.

I am absolutely at my wits end.

I don't want to be like this.

Saturday, July 18, 2009

Exhaustion

I realize that I am behind here, and I promise I'm not ignoring anyone. Thanks for the comments, y'all! I'll come visit your blog soon. Life is a whirlwind when I'm not stuck in bed...lots going on. Presently in bed, though, hurting and so tired I can barely function. Surprised that I can even type complete sentences.

Kelli updates coming up...health, life, etc. Just gotta get some real sleep somehow. I'd pay money for it right now.

Friday, July 17, 2009

The latest body art experiment...

Struck gold today when I obtained a set of Pearl Ex Powdered Pigment from Art With Heart! It will be used in face painting and body art parties. Just playing here...



My cheap camera is not designed to take shots like this, so forgive me for having such bad pics.



The pigments are very, very shimmery and look so cool in person...wish you could see them well. These pigments make cool face paint designs...just the extra shimmer it gives makes all the difference.

Sunday, July 12, 2009

Gaming for children's charity! Check it out!!!!!!!!

This is SO COOL! A group of friends are holding a Mario Marathon to raise money for Child's Play Charity, which benefits children's hospitals all over the U.S. and the world! They just beat last year's record by raising $12,225.00 only 40 hours into the marathon! Incredible!!!

I'm watching them live on UStream now! FUN!!!

Thursday, July 9, 2009

More cards for Operation Gratitude


These are blank, meant for soldiers to send to loved ones. Just one of many options in giving to Operation Gratitude.

Tuesday, July 7, 2009

20 cards for Operation Gratitude



Couldn't sleep, so I made cards for the troops. You can make a soldier's day by sending cards or packages to Operation Gratitude. Check out all that they do...great organization! I'll be featuring them on my charity blog this week as well.

~Kelli

Saturday, July 4, 2009

A friend's poem about Hypokalemic Periodic Paralysis has been published in the MDA magazine

As you can see, it is very frustrating living with a life-threatening illness that people don't understand. Thanks Victoria, well done.


A Day in the Life of a Periodic Paralysis Patient


The 911 call placed, you feel like you're dreaming,
You’re not, from afar you can hear sirens screaming;

The ambulance ride, your body’s not moving,
They wonder aloud, whoa, she's not improving;

Respiratory muscles won’t respond to a breath,
You know once again that you’re so close to death;

Whizzed in on a gurney, it’s all moving fast,
What? You’re parked in a hallway, suddenly bypassed;

How are you this evening? Then give you that look,
The oxygen, sensors and wires they unhook;

They make you feel guilty, as if you are faking,
You’re frightened, can’t breathe, and everything’s aching;

The ER visits, the doctors, the begging and pleading,
You would not desert me if I were here bleeding;

Weakness, paralysis and cognitive decline,
Inverted T-waves, arrhythmias are fine;

The patient is faking, playing possum I see,
With his hammer he can't get a jerk from my knee;

Agonizing pain, it strikes with a flash,
The doctor shrugs shoulders, departs in a dash;

Positive tests, plus symptoms and signs,
Potassium is low, but you will be fine.

~ Victoria Cecil-Shover
Solon, Iowa
hypokalemic periodic paralysis

http://www.mda.org/publications/Quest/q163infocuspoem.html

Wednesday, July 1, 2009

Periodic Paralysis, Muscular Dystrophy, and a public service announcement if the shoe fits...

http://www.mda.org/publications/Quest/q163infocus.html

Periodic Paralysis is their focus this quarter...thank you MDA!

If you question or have ever questioned my condition, you need to read that whole article. Don't say that I didn't try to help you understand. This is a public service announcement that I will not put up with any ignorance or attitudes from family, friends, or anyone ever again as long as I live.

I have lived in this hell every day since I was a child. It is real. It is serious. I have had chronic pain and weakness for as long as I can remember. I don't know what it's like to be able to do regular every day tasks or function without pain. It is a significant part of my life, and I will strive to bring awareness of this condition for the rest of my days.

You can read a great deal of information about it at the link above, as well as on Wikipedia. It is very accurate.

I appreciate those who have believed me (thank you MawMaw) and supported me throughout the years. My life has not been easy, especially with all of the people who have accused me of lying, whining, exaggerating, faking, and even being a mentally ill hypochondriac. I have had a whole two people come back to me and acknowledge that they were mistaken. The rest are either still in denial or have too much pride. They know who they are and they can kiss my ass. By the grace of God, I am still here, with or without them.

It's in black and white, people. The facts are all right here. The facts have been here all along. I did my part, and will continue to do so. Maybe someday, people will realize that they don't know everything, learn to shut-up, and truly listen.

There would be less suffering in the world if that happened. I would have suffered less. I think about what my life could have been, had I been diagnosed and treated in a timely manner. But there's no sense in thinking about that, because there is only today.

Just today. That's really all that any of us have, if we stop and think about it. So I guess the question is, what are you going to do with today? Seize it and live? Or merely exist.

I choose to embrace life, in spite of my circumstances.

Why don't you join me?