"Opting Out"

NEVER, EVER. I WILL NEVER FORGIVE YOU. NEVER.
People who try to compare their problems to mine, when they're not even in the same ball field. I'll never forgive someone who is dying, has a cure, and simply won't take it because they're to stupid. Or simply let their denial rule them. For those people, I can't help. Only throw away from me. How dare you make a joke of my life? How Fucking dare you!? Take your cure and get the hell away from me. How dare you come near us with no such option and spit in our faces with it!? Who the HELL do you think you could even be to come near us with such a thing!?? How hurtful could someone try to be!??
People like this MSers, are jokes. And hopefully short ones. ((If you catch my meaning.))

The Return to Hell

                                                         


It didn't hit me. Not at first. The world swirled and crumbled around instantly transforming into a sinkhole. People, places, memories, possessions, sounds, smells, family being sucked into unknown darkness so fast... In 10 short days I lost my entire world. My family, my friends, my home, my students, my career, my country, my everything... It came at me like a semi from a blind side while we were crossing the Pacific Ocean. "It's gone. It's over. Your happiness is over. Your world is gone. Your beloved ones have died. It's all gone Marlana.. All of it..."

I stared at the monitor in back of the seat in front of me and I just couldn't breath. Yet at the same time, my body didn't want the air. The sky was turning dark outside our window from traveling backwards in time zones. My afternoon turned into night so quickly. I'm sure there is a much stronger word than 'wepted' or 'sobbed'. Maybe completely inconsolable the phrase. I couldn't stop crying for over 90minutes. Going through stock piles of napkins and a few hoody sleeves. I don't know if people have the empathy these days to understand such a tremendous loss. I can only hope they can try to. The heaven that had taken me and mine in, loved us, taught us, sheltered, adored, feed, healed, gave hope, love, and purpose, where only misery, grief, betrayal, pain, longing, torture, deceit, and fear stood. Destroying over decades of damage and mistakes.
It's a strange thing when you find your place and time in the universe. Suddenly everything starts sewing together with ease. It's a crazy thing to wake and be happy nearly everyday of your life. Knowing your value in peoples lives, and others telling you. Always needed. Always wanted. Always, always, always loved. Hugged and praised and told wonderful things. Trying so hard for everyone, and in turn, everyone doing so for you. Even if given a year, I can never explain that place in full justice.

I knew the second we arrived in America. It was day time again by now. We landed in Texas, and instantly I saw the change. Disgusting, rude, useless people were everywhere. Nobody wanting to help we got lost and had to catch the connecting flight twice after the first, because they couldn't figure their own system or jobs out. We were harassed kept back and missed our flight due to their stupidity. It was entirely a 180  from the the people and service of Japan. Dirty areas, bossy people, this is what staying on a base full of unruly Americans had trained me for. To never ever forget what our original hellish home world was and still is. Screaming children, verbally abusive or indifferent parents, things I would never miss.

My mission has begun. Return to the deeps of my original home country hell for my B.A, receive high paying job, save 65% of it, return to true home, reunite with beloved ones, buy dream land and dream home, work real career job, have children, Live happy life as long as possible, die leaving behind no debt. Be buried in the mountains. Have family come see me throughout the year. Be at peace.
We all have dreams. I just make sure to keep my MS in the picture. If you look and know it's coming, it's not so bad, if bad at all.
I find it to be a relief of it's own. I see my goals. I see the wonders to come, the pain that will pass, and the legacy I can leave. I have focus. A goal to achieve at all costs. As MSers, I think this should be a standard. So many people shut down once they start to think about the end. DON'T. It's a mistake. Stare forth and know what ending you want, for the sake of yourself and your beloveds.
Make a difference in any positive way you can. You are always more resilient then anyone will give you credit for. Exceed and surpass their expectations along with yours.
We're more than we think we are. Our worth is higher than we think it is.
Japan, out of the many things it taught me, it also taugh me that, and I will never forget it.









Inspiration for this post:
Birdy - Skinny Love
Birdy  - The A Team
Dog is Dead - Teenage Daughter

Take Cover

                                                     

Sometimes I'm not to big a fan of being me.
22 without a real friend in the world. ((Besides the hubby<3)) Some how it just feels weird. You'd think things would be a whole lot better by this age, and in my case they are by far! But I still see so much in the way of just being happy and comfortable.

Leaving Japan soon has got me a bit unstitched. I had to leave America, fly over the biggest ocean, put 3 countries and x amount of islands inbtween, and then put myself in a guarded military facility, just to rehabillitate myself from my family. Thinking of going back for x amount of years makes my skin crawl. We'll never be safe, or happy for extended periods of time.With those people, it's just not possible. Setting houses on fire, braking in and stealing things. Slashing tires and drive by shooting from strangers. Idenity theft and people showing up at your work to fight you and cause a scene. These are just some of the things my family does. It's the understatment of the year to say i'd be a bit stressed. ((Which happens to be horid for people with MS))

The only confort I really have is my husband to keep me from hyperventalating to death. I've started talking with red cross about trying to get some help for the summer for a cooling vest. They referred me to a website called MSF or http://www.msfocus.org/. They have a lot of programs and events for people with ms AND their family. =D I'm kinda relieved there's some kind of support.
I already found a small cooling mat to lay or sleep on when I feel like I'm dying. lol

Fundraiser for MS

Hey guys. =] I'm starting a fundraiser for a good cause. msisntforeverybody.blogspot.com. What will your money be assisting? It will help to make an indivisual ((me)) so I will have a better life. To name a few,
#1 meadical animal to help with stress levels, also fights of depression and much more to help lower the chanes of attacks.
#2 A cooling vest for summer and the hot days to lower risks of attacks.
#3 Apointmest with an acupunturist. That has helped imporve my postuer and back pain. Which has helped me to have a better life.
 So I'd be happy if you would consider giving. ^^ Thank you.

Glass Walls

Please, oh please, tell me someone else has felt that way. >.< It just occurred to me the other day, that I'm the only member in my whole entire family with MS. O-O lol So I wanted to write a little about what it's like to have MS and not knowing.
I'll tell you one thing that's forever a constant, YOU ARE NOT LIKE THEM. "Them", meaning your friends, family and almost all the strangers you meet. Those kids you see at school, or the people at work. They don't have a clue, and no one can completely, or just kinda, relate to you.
Your just a smige off, but not in any kind of bad way. ((Besides the disease being there.)) You don't get sick often. Flu season's a complete joke to you. The cold doesn't bother you much. You might actually prefer it. Your balance isn't that of a gymnast, but in time, sometimes unknowingly, you learn to cope and compensate for it. Your eyes might be bad. Or maybe just a little off. Unsteady hands are normal to some of us. After all, it's not like you can borrow someone else's for the weekend.
Always tired. FOREVER tired seems to be the game you're always unwillingly playing.
Confusion. You honestly can't remember things. So retaining information is not always too fun. I lose track of thought on the constant. Our eating habits vary, as many things with us do. Anxiety and depression always linger. Like a smudge at the corner of your peripheral. You can be quick to be snappy. You don't mean to. And sometimes you really don't want to. But sometimes, and quite often, emotions will just kick your butt. It's never a "great day" on those days, no matter what you do.

Eventually you'll get older, and things will/can get worse. The "tingaling feeling" or numbness come to visit you often or it may just stay. Eye pain, migraines, loss of sight in one eye, and trying to cop and compensate all the while... Usually no one ever knows what's wrong. Doctors don't exactly go jumping to rare or uncommon auto-immune diseases, first time around. Or an eighth for that matter. lol While all this is happening, you're trying to live your life, just like those around you. It's not easy, and I don't remember getting any memos saying it would be, but without any support or help, it can be it's own personal 'mini' hell. In a way, it's like being in isolation, but not quite alone.
For me, I say a bit of a glass box, now that people know. Always looking, but no one can touch. Well... maybe some... ;) Special people that, REALLY, get you. =] Us MSers can't help being wild cards. It's just what we are down to a molecule level. And seeing how no two are exactly a like, is something I'm just a little smug about. X]

Having MS and KNOWING.... well.... I'd have to say so far... it's relatively.... okay. With medical help you can be more balanced/and or normal. You can have energy. You can stop the numbness in you limbs. You can think clearer and keep your emotions well in check. =] So you don't drive away the people that matter. ~^-^~ One thing about treatment though, it's kinda like searching a huge warehouse for a few puzzle pieces in the dark..... and there's 'wild life' in there with you.... XD But in the end, the quality of life is much better. =] Plus it's kinda cool not having to die or lose my mind or body as soon. XD ((You'll really have to forgive me for my morbidity. 'X])) Also you can reach out and find other like yourself. =] These are the people that know about the pains and hardships we endure. In fact, my editor friend, Amanda, has a mom with MS. And she was the first((so far only)) person to seriously get what was going on.((Besides maybe the Neurologist...)) She helped me get over my fear of my weekly shots, and even gave me a trick to make it much painless. =] It's pretty cool to have a type of 'sensei'. XD

So I must give a shout out to Chris Sigler. =] ~Thank you.~ ^^

It's not all doom and gloom guys. Your life still has the potential to be ridiculously awesome. X] Hell! I climbed Mt. Takao last summer, all the way to the tippy top. =] I ran a 5k the night of my 22nd birthday. ((Last September)) By the way, NEVER did that before. Back in high school I couldn't even run the half mile! XD *Not exactly in shape* lol I'm picking up my 4th language in college with out too much difficulty. I drink, travel, shop, hang with my groups, go to salons, spas, and even thinking of going sky diving soon.
((But I'm not going to swim in the ocean. That's just plain scary.)) '_' XD
You CAN find love AND keep it. You can have a family, if you choose. The most important thing is that you get out, and make a difference. You don't have to go save the world. Just make a difference to yourself. And if you can handle it, maybe to your loved ones also. =] After all, I never said the glass box was permanent... ;]

Swimming in Grey

ROAR!!!
Sorry. Just wanted to start it like that. XD Everything's been going ok for the most part. =]
Still in a battle over my muscle pains. Went to see my PCM ((Primary Care Medic)), but got his stand in.  ^^* She was rather upfront about her absolute lack of any knowledge of my "condition". So she called another guy, and he basically did the same. ( '_';) Luckily I have bronchitis, so they were pretty excited they could do SOMETHING. lol
Backed out of the tattoo for the most part, for now. Just got too complicated honestly, and I just wasn't willing to make certain sacrifices. ((My wonderful wonderful Onsen<3, and of course, my loving squishy bear's adoration of my ankles. XD)) I felt pretty bad about having to back out over those kinds of things, but in the end I can always get one later. ^^

School thing.... yeah..... One of the first medium sized disappointments of the year. But I highly confident I'll be able to start in late March. Going back to school makes me a bit nervous. Seeing how the last time, I was UN-medicated, undiagnosed, highly stressed, having EBAs, anxiety attacks, and honestly, had no idea how to brace myself for college. ((Yes. Little did I know it was all the Ms's fault... and my family's.... XD))(MS is a cognitive, as well as a physical and emotional disease.) You'd be surprised to realize how much of your personality and life experiences came from or were influenced by MS... So this time around I'm readying myself and trying to keep calm. Slowly, but surely, I think I've gotten a bit of a handle on it. =]

Video wise, still need to get a program..... that actually works correctly.... XD And I got some video shooting ideas I'm still working on. :D In the end, I hope it helpful to some out there. ^^

Not So Tech Savvy, Are Ya?

Having technical difficulties, to say the least. Even after I got technical support from my awesome friend Amanda. Who actually went to college for film and video! =D She came over to help with the program I'd gotten...... and then things went down hill. XD In the end, I looked retarded and was talking without my mouth moving at all! XD I told her she should just go shoot herself in the corner. lol We agreed 2 hours later that the program was a piece of crap and I needed to get another. T.T
Then of course my lover told me that the video takes I did were horrible and depressing! "Not enough eye contact. Don't play with your hair! Don't look over or roll your eyes! It's too distracting!" XD ((OK Mr. Director.....)) So I'm on take 5 now. No lie, I'm starting to become slightly discouraged.... But! I really want this to work!
This is the year of the new leaf, and I'm going to actually try to finish crap I start. LOL ((I'm a SUPER BIG procrastinator)) So please understand it'll take me a little while to get it done. In the mean while I'll try to keep typing on a regular basis. =]

Current status on the MS front; My legions have finally stopped progressing! =D Random limb twitching is down, and I'm starting to get sick like the normals do. lol XD Not too fond of that part, but don't have much in the say.... Going back to college finally! =D ((Because not being able to get a nice job that pay well really suck. >x< ((And for us MSers pick of the job is more important then you'd first think. '_')) Nervous about the upcoming classes, work, tests, deadlines, traveling, and just day to day stuff I might feel a little over loaded these next few months. Which is why I'm going to see my Doc about upping the dosage of Effexor, so I don't freak out and have a E.B.A.

Taking my shots is getting some what easier. ((Way better now then in the beginning...=_=''''')) My lover's been wonderful about the whole thing and likes to give me the shots. ^^ Seeing how only my legs are the easy injection points for me. >.< Hoping to get some pain meds soon so I can get back to the gym. I know it sounds weird, and no, I'm not a meat head type. I really love working out even if it's nothing amazing. It still help us MSers out a bunch. How? Losing weight is good for us by reducing other health hazards, including high blood pressure, kidney failure, stroke, heart attack, and many others. It promotes endorphins, which helps you to feel better and fight depression. It helps you build up energy endurance, to make you more productive too. =] Over all it just a really good thing. And yes, having a workout partner of some sort will make it funner and easier for you to do it.

So until then I'll just keep trying. T.T Wish me luck~