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

Monday, December 31, 2012

2012, Good Riddance. 2013, I'm coming after you.

I can't believe New Years Eve is finally here. Whereas many years seem to fly by, this one has dragged relentlessly. In fact, the last two years have felt like ten. Hard to believe, but I have been blogging for over ten years now, and I have made and assessed a list of goals (resolutions, if you wish to call them that) every NYE. Facing one of the most difficult and emotional Decembers of my life, I considered bypassing the tradition. I debated on it for days, and decided that the only way I can move forward into a new year is to, for lack of a better phrase, "keep calm and carry on".

So here I am to assess my 2012 goals. I know it will be somewhat painful, but worth reviewing so that I can effectively create new goals for 2013. And away we go...

Assessment - 2012 Goals:

1. Wrap up my time at MGCCC and successfully (FINALLY, PLEASE) move on to university.

- Wrapped up MGCCC on the President's List, but was forced to drop out right after I applied to university, due to having to file for Social Security.

2. Publish my first eBook.

- It isn't finished but it IS in progress.

3. Return to teaching and working, God willing.

- Nope. Devastated.

4. Complete all art, craft, and charity projects currently pending or in progress.

- Hahaha...no. Not even close.

5. Become more organized in my home and daily life.

- HAHAHAHAHA. Ok seriously, I am working on this and I have made great progress, but it is taking time. It has been a rough year on the homefront, needless to say.

6. If I start something...no matter what it is...finish it!

- I was sporadically successful, but I still have unfinished projects in progress. They WILL be completed.

And now, my 2013 Goals:

1. Scoff all you want at me for following the crowd, but I need to lose weight. I have gained too much, and while I don't qualify as "obese" yet, the 15lbs I have gained is adversely affecting my health. I must find a way to put a stop to the gaining and take off the extra pounds in spite of not being able to exercise.

2. Overhaul my computer, including but not limited to better organization of all files and folders. This is already in progress, but it's going to be quite a task.

3. Sort through all belongings and get rid of anything not needed or used regularly. I have too much trouble letting go of worthless little things. No, I do not belong on the TV show "Hoarders"...LOL...but I do need to improve upon this.

4. Exhaust all possibilities with the government concerning SSI, college, etc. If they refuse to allow me to finish my degrees, regroup and seek counsel in figuring out a new plan for survival.

5. Utilize the textbooks, DVDs, and other tutorials I have obtained over the past year.

6. Complete, or at least put a massive dent in, all unfinished art and writing projects.

And as always, I have four goals that I call "Mainstays", because they are the same every year:

7. No-Brainer of the century - don't croak! Ha! I have to get this condition under control somehow.

8. Stay involved in one or more charities. It gives me a reason to live.

9. Read more, write more, and learn more. Will elaborate on this later.

10. Be a good friend/relative, and strive to improve myself every day. I need to spend less time on people who don't give a damn about me, and more time on people who do.

I will hold myself accountable, and blog about some of these goals throughout the year. My list isn't terribly exciting...it rarely is. I have to choose my battles carefully. None of them are easy, but they are practical, possible, and worth the effort.

I'm trying my best to press on and make the coming year better than the last. To all of my readers out there, have a safe, productive, healthy, and happy 2013.

Let's do this.

Sunday, December 23, 2012

Acceptance and Giving Up

I am trying to cope with life as best as I can, but I think sometimes I have to realize that I'm human and I'm not as strong as I want to be. I have days when I put on a smile and make lemonade with the lemons I've been given, and I have days when I'm sick and tired of the freaking lemonade, and I grieve for the life that I have lost to this disease. It's hard to have hope when the future looks so dim. Owned by the government and relying on other people to provide my basic necessities is not living. It is merely existing...nothing more.

I had plans like anybody else. College was killing me but I was killing it in return, and I had no intention of quitting. I couldn't wait to get my Masters so I could teach and counsel, even if it was only possible via internet while propped up on pillows. I would have been satisfied with that (I think), and I would have been one kick-ass online instructor. I also planned to provide therapeutic art in my community free of charge in my spare time. I had a solid goal toward the only things I've ever strove for...independence, and making a difference. I wanted a tiny house in a town that I don't hate, and once stable and established, I wanted to apply for foster parenting. I have said since I was a little child myself that I would be one of "those moms" whether I had my own children or husband or not, and I meant it. But that's gone now. All of it...everything I've ever wanted has been ripped out of my hands, as if I'm not worthy of achieving it. I'm not okay with that. I am unfathomably angry.

I don't know anyone who has ever wanted to be more independent. While I don't take the abilities I have for granted, it's impossible to ignore the fact that this is an unfair world that operates on survival of the fittest, and I am not one of those people. So what happens to me? Exist day in and day out until I die in poverty? Forced to live being watched or controlled by other people, who may or may not resent me, for the rest of my life?

Unacceptable. That's what this is. It doesn't matter how much lemonade I make, how positive I think or speak, or how much I pray for my sins to be forgiven in hopes of being good enough to get somewhere in life...that doesn't change reality. I talked to someone tonight who insisted that everything bad that happens to us is a demon. If you're sick, you have a demon. If you're born with abnormalities by the world's standards, you have a demon, and somebody did something wrong to make it happen. You're cursed.

But isn't a holier-than-thou individual proclaiming that you're cursed, a curse in itself? I'm not a Bible-thumper, but I am firm in my beliefs. I know where I'm going when I die, and why I'm going there. I'm a believer, but I can't bring myself to believe that any person has the right to say someone else is possessed by the devil because they're sick - to say that a kid with Epilepsy needs a demon cast out, or a stroke victim must have done something to offend God, or a Muscular Dystrophy patient just doesn't have enough faith to be "normal". The very notion seems, in its own way, sick. And I don't accept it.

I've also talked with people who think I shouldn't be allowed to be independent. They think I should have to live my life under someone else's thumb, even if that means an unhappy home or a facility of some kind. Never mind that I'm only in my mid 30's, intelligent, and could survive on my own if I had the resources to do so. Tough luck. I'm crippled, so I should have to accept being imprisoned for the rest of my useless life, controlled by the fears and convenience of others.

I don't accept it. I don't accept any of it, and I never will.

To those who say this is the existence I should accept...to those who choose to ignore the facts as well as the possibilities...to those who disregard my full potential because I have a physical disability...to those who claim that I'm cursed...to those who think I'm not good enough, strong enough, or worth it...to those who believe I'm done for and have spinelessly written me off...to those who have given up on me, and expect me to do the same...I suggest you get the hell out of my way.

I don't give up.

Saturday, December 15, 2012

God save us. You're the only one who can.

I haven't turned on the TV or radio, and I'm not clicking on any articles. But I know what has happened. It's all over everybody's statuses, tweets, and in the headlines, but for the sake of my health I am keeping myself away from images and horrific details. Stress and grief are dangerous HKPP triggers, due to adrenaline release, so I have no choice but to stay calm even though what I really want to do is cry hard and beat the hell out of something.

I can't believe I exist on a planet where some innocent children are born and raised in love while others are traumatized and brutally murdered. It is beyond my feeble mind to grasp that this is life as we know it. This is not a reality that I can accept. This is not a world I want to live in.

What I would give for humanity to be more transparent, so we could see when someone has evil intentions, and rid the world of them before they destroy the lives of others. If only we could know, so we could protect our precious loved ones from unspeakable acts such as these.

Lord, be near.

Tuesday, December 11, 2012


I am utterly devastated to learn that my sweet friend Alexander has passed away.

He had Periodic Paralysis, and we had many conversations via Facebook private message concerning our condition. He picked on me about my blog rants, and translated my blog and Yahoo article for his friends and family in Ukraine. I even gave him some input on his little girl's English homework one day, and I was honored to do so. Most of the time we would just check in and ask about how each other's week was going, health-wise. We understood each other perfectly, in spite of our slight language barrier.

Like most of us with Periodic Paralysis, he had been through the wringer where medical care was concerned, being mistreated over the years and not taken seriously. Even with a family history of close relatives dying prematurely, he had so much trouble finding a doctor who would listen and treat him properly. He told me that doctors kept telling him it was all in his head, because they had no knowledge of the condition.

Story of my life. I related to Alexander so well...his story and mine were almost parallel.

Many of us in the online support groups did our best to encourage him through the battle. I've been told that he died in the hospital after an episode that affected his breathing. It sounds similar to the episode I had in June, when I had to wait in the ER to be seen, and debate with the hospital staff for days to be treated correctly.

My heart is crushed for him and his family. Alexander was only 31 years old, married with two young children. I will never understand. Why him? He was a devoted husband and father who had so much to live for. He started a mission to educate people in his region about this disease, even finding others with Periodic Paralysis and trying to help them seek treatment in the midst of his own challenges.

I simply cannot wrap my brain around this loss. Why him? Why not me?

It makes no sense whatsoever. It is unfair.  It makes me angry.

I will never understand. I will never stop asking why.

Thursday, December 6, 2012

Choosing Battles

Credit: CorgiAddict.com
This is pretty much how things are going lately.

My body doesn't seem to know which way is up anymore. Even my uncle, whom I share a house with but never speaks of my condition, finally chimed in and said "You're not functioning."

No kidding. Thanks for letting me know.

I manage to get a little bit done most days, but it usually involves something small. As most with systemic disease know all too well, I have to choose my battles. I can wash my hair, or I can load the dishwasher. I can prepare a semi-homemade meal, or I can struggle through a load of laundry. I don't take these things for granted whatsoever. Not a one. I find myself taking note of every little finished task on my to-do list and calling it a win. I can't help but be sad at times, though, that I consider taking a shower and putting on clothes an accomplishment. Who does that? Apparently, I do. Perhaps I'm not the only one.

I'd be lying like a dog (pun absolutely intended) if I said my treatment was going terribly well. It's not. My body is frustrated and it's making that known every minute of every day. I'm in horrendous pain from head to toe with no relief. I seem to be entering a state of acidosis thanks to acetazolamide, which I still have not successfully titrated to the amount that the doc wants me on. I pray to God for mercy that I don't start passing stones again, and I can't get in any position and be comfortable enough to rest. I literally do not sleep until my body crashes, whenever that may be. It's usually sometime in the morning or afternoon for three or four hours, and I'm usually in the middle of something. I can be in mid-sentence typing on my laptop in bed, and suddenly I wake up later with my hand still in position on the keyboard, partially paralyzed. I wonder sometimes how long I can continue existing like this. I'm trying so hard to function, but I am exhausted in every possible way.

I do what I can to distract myself. I'm working on an inspirational eBook, small craft projects when my arms and hands allow it, and spend a lot of time on Twitter and Facebook. I am grateful to those who put up with my ranting, raving, and rambling on social media. It keeps me sane.

I'm supposed to be heading to Louisiana today for a relative's wedding, but I am physically and financially unable to make the trip. I'm pretty upset about it. No matter how long I've lived with this disease, I can't get used to the fact that I don't have the same privileges as the rest of my family and friends. They can go and do what they want or need. I struggle with not being granted such normalcy.

I refuse to give up on having a life again, and I count my blessings in spite of this prison.