Monday, January 24, 2011

I do not ask for help, kthnx.

sometimes you miss the past and wish it never had to end up the way it did.  sometimes you ache to go back to when things were comfortable and familiar and forget why it's in the past and block out all of the negatives that made it bad for you.

for me these moments seem to come when i'm faced with serious issues.  presently i await a call back from my neurologist to probably start home IV steroids again.  this will be the 3rd year in a row.  i'm actually surprised it didn't happen sooner due the insane amount of stress and bullshit i was put through in 2010.  realistically though, i have felt 'off' physically for some time now but continued to put it off as things would clear up temporarily or because i wasn't going blind like with my other relapses, so i figured it was nothing major.

my entire body feels like stiff dead weight and like it doesn't even belong to me anymore.  during times like these you hope someone in your support system will understand what you're going through or somehow read your mind as to the what you need from them.  but none of that ever happens.  if you're someone like me, you hope they go out of their way to be there because you sure as hell aren't going to actually ASK for help.  why would you ever admit to being unable to do something and needing someone else to take care of you?  you wouldn't.  so those are the moments when you wish someone would read your mind or just sit by your side for 24 hours in case you need it.  but they won't as they're not mind readers and you have to somehow communicate your wants and needs.

but, remember?  you won't do that because you refuse to have to ask for help for anything, from anybody.

I remember my entire life before MS.  I was an anxiety ridden, scared, naive, 'helpless' person.  really, that's the truth in many ways.  i let so much small shit and ridiculous shit cause me anxiety and scared feelings.  i also wanted to be taken care of, or waited on, or simply enjoyed having people there to help if i needed them.

It's kind of ironic how when i decide to 'grow up' and become a stable, normal, hard working, independent, stubborn jackass of a woman that i no longer have the ability to be any of that.  no longer do i have the freedom to over-work myself or not ask for help or do things alone.  of course, i still do that, but it costs me greatly physically and mentally in the end because i'm too stubborn for help and my body just shuts down on me.

so, i wait for my call-back to see how we will proceed.  honestly, it's normal protocol and everyday bullshit by now....

dr "so what are your symptoms and issues nikki?"
me "going blind (although this time, my body changed it up and i had the terrible, pain-staking, impossible task of trying to describe my pain that i am having to someone who doesnt have MS since the optic neuritis/blindness wasn't my symptom for the first time ever)"
dr "well, what do you want to do?"
me "well dr. lilik you KNOW what i want to do.  nothing."
dr "we need to do something"
me "alright, but we're doing home health, i have too much to take care of to stay in the hospital"
dr "of course"

god love the man for putting up with my stubborn and over worked attitude.  seriously.

so i'll sit and wait to hear back from him.  then probably have to have a home nurse call my mother to give them directions.  then have to occupy the dogs somehow so that the 2 out of 4 of them who bark will shut the hell up when various strangers are parading in and out of my house.  then wake up dick who hasn't slept at all yet to help me should i need it.

there is nothing worse than having your schedule screwed up and having to be a burden to those around you.  i especially feel sorry for my dogs, my mother, and my boyfriend at times like these.  I am emotional, bitchy (bitchy because heaven forbid i am incapable of doing everything myself and the fact that i'm also in pain every single day), and worst of all, burdening their lives and putting a damper on their plans and THEIR schedules as well.

During these times I'm sure many of you, like me, feel helpless, embarassed (because you can't be the strong, stubborn, over-worked, independent person you normally are), and like nothing more than a burden to people who don't need you to burden them.

In all reality we know we're not burdens, but seriously, who's idea of fun is it to take care of their adult daughter or their girlfriend while she's on an IV or being a debbie downer or going through a health crisis?  I'm sure that's no one's idea of a picnic.

But, with any luck we'll hope he says to wait it out and there will be no steroids and IV's.  let's hope so at least.  hope, hope, hope for the best.

I'm pretty sure I stopped making sense after the first 2 paragraphs, so that will be all.

I'm sure one day I will get used to breaking down and allowing myself to be taken care of.  I hope that one day I will actually ask people for the help I need from them.

But that day is definitely not yet today.  haha.

Wednesday, January 19, 2011


sometimes you push so much and try so hard for things that will never happen or will never change.  you see yourself getting nowhere, yet still continue to hope.  is that really hope or is it just being an idiot?  i'll go with idiot.  i'll also have that written across my forehead, please.

Some days the lines between positive and negative and hope and hopeless blur until you can't see the difference or when one stops and the other starts.

"happy endings are only in movies, and love songs are only on the radio"  is a quote that plays over and over in my head often.  It has nothing to do with love to me, but everything to do with life.  It also isn't about a negative outlook to me, instead it's about not wishing for things that will never happen in real life.  In 'real life' there are many other circumstances that play on how we interact and how we deal with things.  The challenge lies in having someone prove that quote wrong when dealing with life in general.

I'll remain hopefull while still maintaining some form of jaded realism i guess.  Life is easiest when you wish for the best, but always know the worst is a possibility.

Tuesday, January 11, 2011

Keep on Keepin' on

The past week and a half has been entirely too draining.  Death, lack of sleep, soreness, people not realizing my worth, over-doing it physically, all sorts of things.  But I have seemed to survive it which is all that matters.  I always seem to give entirely too much of myself out and not get the same in return, but it takes a toll on me mentally and physically.  I give with my whole self, but the damages are sometimes entirely too much.  So here's to a much needed rest.  Here's to no longer giving everything despite getting nothing.  From now on, I will only give in such a selfless manner when it is beneficial to me.

Aside from the pressure and mental and physical draining, things have been going decently.  I feel so deeply for those people who cannot see beyond the terrible to get to the good stuff, the ones who only focus on the negatives all around them rather than seeing all the positives.  Life, relationships, etc are like anything else, you only get out of them what you put into them.

It's a new year and I plan to work on not draining myself to give to those who don't give to me.  I plan to continue seeing the beauty even in the ugly, and I plan to keep refusing to let MS or various other things ruin my life.  I also plan on getting back into some form of working out and eating healthier.

Mortality is something that's always on your mind when you have an illness.  I'm at the point where dying or having anything serious happen to me physically wouldn't scare me.  I think I've made a difference to people and have lived well.  But, with mortality always on your mind, you become so much more aware of how we are given one body and  one chance.  So I'm going to treat it better this year.  I'm going to keep on going and stop putting myself through the ringer to get nothing back, eat healthier, and live better.  Hopefully it gets me somewhere.

Tuesday, January 4, 2011


In a perfect world, people would never be taken from us, especially not before their time.  They wouldn't be taken in their prime, or their best years, or before they had their chance to reach their full potential.  None of those tragedies would ever happen.  But this is not a perfect world, and they do.

Nothing good usually comes from those times or instances, except for 2 things.  You should learn to value your life.  Your trivial bullshit means nothing.  You have been left the gift of living for some reason.  So choose to use it and find your reason.  Also, do not take things for granted.  Instead of constantly finding fault within the world or yourself or others, look to the positive things you find.  Spring-time new life, a rainbow, an amazing summer sun shower, beautiful fresh snow, a gigantic gorgeous plate of delicious food.  ANYTHING.  But you have to find something.

There is so much wrong within this world, and with those around us.  But all you do is waste your time and everyone else's when every word that comes out of your mouth is laced with negativity.  Rather than bitching and moaning, try to change something or make a difference starting with yourself.  When did it become so 'hip' or comforting to be in a constant state of negativity, or even worse, hatred?

Everyday people are lost who do not deserve it, or who are entirely 'too young' for it.  They are ripped from their enriched, amazing lives, and a hole is left in their presence.  Children, volunteers, young men, beautiful women, go-getters, people who maintain a positive outlook in the face of a terminal illness, etc.  But not you, not yet.  YOU haven't met your time yet, so make the best of it.  Do not be so self righteous that you cannot even choose to shut the fuck up and make it work.  If you don't have that sort of self worth to do it for yourself, do it for those around you, the ones who haven't given up on you, or do it for those who chose to live that better life, yet were still pulled from us too soon.

Nothing is ever too big to overcome.  Make a choice.  It was the best choice I ever made.

RIP christa, ciao bella.