Monday, December 30, 2013

I'm worth more than this.

Recently, I've been coming more to grips with what is going on with me and ... I realize that I'm more important than I have been treated.  Sure, you want to come to work and cough your germs all over the place ... because you're in your selfish bubble and don't realize that I actually have health problems that could be adversely affected by you.  I know you don't know this because you are too caught up in reminding everyone about yours ... which sorry ... mine are life threatening in nature so I should be talking about them instead of having to listen to yours.

Perhaps, I should become a total bitch about it.  Perhaps I should remind people what risk factors there are to me getting a bad chest cold, or a flu.  Nothing bad could happen or ... something terrible could happen.  My body won't fight infection the way yours does.  So, if I get one, it would mean something different to me than it would to you.  I wouldn't come in here with anything awful and I expect you to give me the same level of respect. 

Of course, those people that are reading this are not the YOU that this is referencing.  It's just me wishing I could say all these things to these people without it becoming some huge harassment.    Yes, that is the world I live in, standing up for myself could get me in trouble ... doesn't seem right, but ... that's how it is. 

Anyway, I've started to cut back a little on my hours.  Yes, I have.  I will NOT be working past 9 PM on Fridays or Saturdays because the environment in my place of employment is not a healthy one.  Absolutely not.  It stresses me out and I just don't need any extra stress.  So ... I've dumped all my hours past 1am.  And ... I may be swapping a couple days a week with a dayshifter so that I may have 5 days of regular sleep and only 2 days of nights. I am immensely excited about this prospect!!!!!!!

I am worth more than what I am right now.  I'm worth more than just being a doormat for people.  I'm worth more than just being a person filling a position in a job.  I am a person with dreams and aspirations, I have a life outside of here that I miss when I am here.  I have SO much going on in my head, a constant battle about my health and money and all this. 

I am going to stick to my guns on my new rules.  I've posted the couple 03-05am shifts that I picked up for some reason.  I can't do that and I know it.  So ... hopefully someone will take them because I absolutely cannot work that late.  I can't. 

My disease is not getting any better.  I don't mention it to people, I really try not to talk about it because no one wants to hear it.  But, it's true.  I've been feeling worse every day but I keep a smile plastered on my face and try to keep moving.  I don't want to bother anyone with it. I don't want to annoy people about it but .. it's true. 

I'm sick.  I feel dizzy and off and nauseous EVERY day.  I smile and laugh to cover up the fact that I wish I was at home curled up on the couch.  I'm miserable on the inside but I don't need to bother everyone with it so I keep it hidden.

Yes, I look and act like everything is good.  I don't want to be a whiner.  But, please don't even think to utter those horrible words "You look like you feel better" ... because you have NO idea what I go through every day.

I'm putting myself first from here on out.  With my husband, with my friends, with my co-workers.  I come first.  I am living in this body.  I am in control. 

I'm worth more than how I have been treated.  It's time to take charge.

Thursday, December 26, 2013

What's Important

Have you ever taken a moment to stop and prioritize things in your life?  I'm not talking about the BIG things like children, mortgages, spouses, etc.  I'm talking those itty bitty things in life that we often overlook as just something that happens.  For example:  eating, drinking, sleeping, breathing, thinking, dreaming, believing.  Those are tiny, involuntary actions that our body just DOES.  We don't have to walk through life saying "Breathe in, breathe out," "chew, chew, chew some more, swallow ... oops, keep chewing" "one foot in front of the other, up down, left right"  These things just happen for us.  Which is good, because with how forgetful people are ... some may forget that they were supposed to be breathing and ... poof, they are gone.

I've been put in a position where I have to actually put an emphasis on some of those little things.  Let's just talk about the major one for a moment. 


Everyone does it.  Most of us don't do it as much as we should.  Myself included. I used to just get a few hours of sleep and would think I was doing just fine.  Sure, I'd be tired but it was OK.  I could keep going.  As I got older, the few hours didn't work so much.  But now, I'm hovering near 6 and my mind wakes me up wanting to get up and do things.  HA!  Stupid brain, I am not physically capable yet of doing the things the brain thinks I should be up and doing.  Still, my brain hasn't quite gotten with the program that sleep is MORE important than working out.

I hear all the gasps and protests for all the fitness obsessed friends out there.  Yes, people.  Sleep is MORE important.  If you don't sleep, you're not doing your body ANY good when you work out.  Don't believe me?  Google it!

Sleep recharges the major organs in your body.  A lack of sleep can actually kill you.  It can cause major heart issues.  Sleep.  It's how our bodies fight infection and for me ... infection is the boogeyman that can steal away my life right out from underneath my nose.  Hence the extreme anger over the sickies coming to work.  It's a cold for you, it could be a lung infection for me.  AHH!  Anyway, ... sleep saves.  Sleep repairs. 

This is my new #1 priority.  I need to make sure I am getting 8 hours.  I get off work at 1am.  I'm in bed about 0130.  I need to not wake up til 0930.  Somehow, I have to make this happen.  I haven't figured out how to shut off my brain yet.  My body is screaming at me daily that I need more sleep. 

I need more sleep.  I need more deep breathing.  I need less stress and more peace.  I will make these things happen for me.  I suggest everyone do this.  There's a lot of people around me who could use a few deep breaths, a glance at the bigger picture of life, and how quickly everything can change. 

Don't take a moment for granted because you could end up like me, sidelined, being reminded daily that I am not as good as everyone else because I can't do them.  Being told there are "no excuses" when I am also being told by a doctor who's opinion is more important than a regular person  Doc says no.  You can think there's "no excuse" all you want.  I'll take my health over an obsession.

Being alive and healthy is important.   I'd like to stay on this side of the ground, thanks. 

Sunday, December 22, 2013

Does it leave a mark?

** Warning:  I may or may not be whiny and emotional **

I just finished reading a book that had many zingers that hit too close to home for me.  The book was titled "The Fault in Our Stars".  The main character is a young girl in remission from thyroid cancer.  The other characters are either afflicted with cancer or their family.  It's all very close to home.   I am, after all, in remission from cancer. 

I have that other blasted disease that is being treated but ... is a sleeping dragon that could wake up, rain fire down upon my life and extract me from the world.  This could happen, it could not.  Life is a HUGE unknown for me.  I know, it's unknown to everyone but, there is a higher probability that the worst is more likely .... for me. 

Anyway, the book ... the book ends talking about the impact someone's life makes on the world.  Everyone wants to leave a mark.  Everyone wants to make changes and be this inspiring thing.  But, few of us are.  In fact, I know I'm not. 

I do not mean, in any way, to be self deprecating or to feel sorry for myself.  It's just, ... I'm kind of a background piece.  I'm a face in the crowd, I'm a peg filling a spot.  The hard truth is, if I walked out the door right now ... and never came back, the loss wouldn't be that substantial.   I don't have that much of an impact in any life.

I don't have children.  I don't have a whole lot of friends.  I don't have a huge family.  I probably couldn't even fill a few rows of seats for my own funeral.  It's just the truth.  I'm not beautiful.   I don't stand out in any way shape or form.  I am more of a doormat, someone that can be used to achieve some other sort of goal. 

Maybe that would be the impact losing me would have ... people would not have me to use?  No.  I'm not "being used".  I don't know.  Sometimes, I feel like suddenly I've become rather opague, people can see right through me. 

I've been thinking a lot about the potential end of my life.  Not that I am exactly in any great danger right this moment.  However, I come to work with an immune system that has presently been shut off.  I thought I made this abundantly clear to those around me.  Alas, I have not.

I cannot explain the anger that runs through me when I hear someone sniffling or coughing and then say "It's just a cold, I don't need to stay home"  or ... this one was a killer.  "I think I have the flu now" and they didn't go home.  No.  They stayed in here, in this recycled air room ... near me. 

I don't wave my disease around like a banner, but perhaps I should.  WTF! Is it not clear?  Someone with my condition, in remission, DIED because they caught an illness from someone.  This is the extreme worse case scenario.  But, it's always in my peripheral.  I CAN'T just casually get the flu or a cold.  I can't just laugh it off like nothing. 

I can't even change my effin' cat box because of what's going on in my body.  I can't just go shopping and touch things and then rub my eyes.  Nope.  Wash my hands, rub Purell on them.  People may be germaphobes out there but they aren't trying to save their life. 

People coming in here sick really makes me feel like I mean nothing.  I explained what was wrong with me and ... people ignored it. 

I have to listen day in and day out to everyone's problems, every day.  But, no one ever seems to notice mine.  No one notices that I CAN'T do things that they can.  I am on restriction from EVERYTHING because I am NOT GETTING BETTER!

Thankfully, I'm not getting worse, but I am definitely not getting better.  I'd give absolutely anything to have the sort of normal-ish existence that other people have.  I really would.  I would give anything to only have to push through being tired to get up and do things.  I would give anything to be able to look ahead towards the future and think that it might happen. 

Instead, I feel like I am looking forward at a dark hole ... the end of the line ... to nothing.  I don't want to be this whiny, crybaby, who is sick, poor me, wah wah wah ... but, I DON'T WANT TO DIE! I don't want to leave the world, I don't want to be done.  I don't want the lights to go out and everything be over.

I don't want the disappear.  I don't want to be forgotten. 

My life, it won't leave a mark.  Not even a blip on the radar.  

It doesn't mean I'm ready to go. 

Saturday, December 7, 2013

Hold On To That Feeling

I wish I could hold onto the feeling I get when something tragic happens, or when I am reminded of those who are less fortunate than I am.  Everything in my worlds seems a little less dark.  I acknowledge what I DO have, instead of focusing on what I don't. 

Recently, there was a very public traffic accident involving the actor, Paul Walker.  It was sad because he wasn't one of those drinking, drug using partying celebrities where you know it is only a matter of time before they are in the headlines as "recently deceased".  Nope, you really only saw him on the Red Carpet, or in the movies.  At least, he didn't stand out to me in the tabloid magazines.   Anyway, turns out, he was incredibly philanthropic, a wonderful father and stand out guy.  Everyone always sings the praises of people who die but this time ... there were events to back it up. 

When someone dies so tragically like that, so suddenly, it always makes me take pause.  It could happen to anyone at any time.  I get so fixated on the ticking time bomb of my own health that I forget all about how I could end up in a crumpled tangle of metal  on my way home tonight. 

But, it's not just people dying that makes me take stock of my life.  It's also those that are going through hard times in this happiest time of the year. 

Every year, our dept put up an Angel Tree downstairs with people/children who need/want things for Christmas.  I always take one and usually do one of the hearts from the volunteer place.  I got my angel and my heart, and will be contributing to the "adopt a family" that we do every year as well.  I am glad that I am in a position to help people during the holidays.   Alas, I am not immune to the pain I get in my heart when I read some of them.

One of my friends posted their heart on facebook.  They have a 13yr old boy and all he asked for was a warm sweater and a gift card for food.  And that ... is where my heart broke. 

We are having a bit of a cold snap here in Northern California.  Colder than usual temperatures.  We just finished updating the heating in our house ... that we own.  This means all the more to me now as I sit and think about those struggling to find warmth while living on the streets, struggling to keep their children warm.  My heart aches for those who are trying to provide something of a holiday where there is just no money.

I have seen these Angels and Hearts with people asking for an iPad or an iPhone, A PS4 or Xbox.  Ok, yea ... this isn't the Beverly Hills Giving Tree!!  Then, next to those are the hearts from elderly folks just looking for dog treats, warm gloves, a robe, a stuffed toy, some legos.  It kills me.  The simplest of things ... mean so very much. 

I love giving at Christmas time.  So ... even though I had the idea that I only want to buy for the kids in the family this year because we are a little over budget in places ... I made a list and bought a little something for everyone in the family. 

OK, not EVERYONE but ... my brothers, their girlfriends, stepmom, dan's mom and siblings, etc.  It's not as long a list as it looks.  And, I just got them little things, just tokens of my love.  It gives me a good feeling to do things for people.  And, I am excited as heck to wrap up the gifts for people.  I am excited to give things ... and I don't want anything for myself.

There are people out there in this world who would kill for the luxuries that I have.  There are people who would sacrifice everything just to be able to do what I can do.  So what if my bills climb, I have the money to pay them.  I can't take it with me when I die ... so I am enjoying it now.

I need to hold onto this, hold onto how I appreciate everything right this moment.  I don't want to get back to being that selfish, whiny, cry baby about everything in life.  Others have it worse.  There will always be someone who has it worse.  In hindsight, even with everything going on ... I have it good.  I am overweight because my drugs made me hungry and I had enough money to get food to eat to make me look this way.  I have a house that I can curl up on the couch and not exercise. 

I have a new car.   We have a newer truck.  My husband has his work truck.  I have a HOUSE!  What in the world do I have to complain about when there are people out there who would set aside their own desires to get treats to give to their dog because they can't afford it?  I look into the face of my dog ... the spoiled rotten lil puppy that he is ... and I would be devastated if I couldn't provide for him. 

I don't know.  The world is a cruel place.  I am lucky to be in my life, as hard as it may seem at times.  I am thankful for what I do have, for the people in my world. 

It's the most wonderful time of the year for me ... and I am bound to make it that way for others.

Monday, December 2, 2013

It's not easy to be me.

Remember that Five for Fighting song, "Superman"?  Sometimes I feel like that is the soundtrack to my life.  At least the chorus "It's not easy ... to be ... me"  because it's not.  Granted, who ever says it's easy to be them, right?  Even rich celebrities say their lives suck. 

Anyway, it's not easy to fight this battle I'm in.  It's not easy to feel like you're walking miles behind the rest of the world in the great rat race of life.  Some people are running, and I can't even pick up the pace to attempt a jog!

Injection days are the worst.  I would give my right arm to be able to just crawl into my sweats and curl up on the bed all day on injection days.  I don't want to have to go out into the world and do anything.  Alas, that's not the case.  I usually have to work or ... I have to do something.  I wish things were different.  You have no idea.

I am desperately trying to get on the healthy living horse again.  Being such a slug is making it a difficult transition but not for lack of trying.  It makes me mad about being sick.  It makes me mad at the world.  It makes me mad at people around me.  It makes me sensitive to comments.  It just makes me a generally unhappy person.

I shouldn't let it, but it does.  I am exhausted from constantly fighting this monster.  I am exhausted from constantly trying to live my normal life. 

I am reminded often that I am lucky to be above ground.  I am reminded that there are people who are worse off than I am.  It doesn't make the anger magically disappear however ... but it is a start. 

It's just not easy. 

And when things feel like they are starting to get worse ... like the scab reappearing in my nose, the new wheeze I have when I breathe out, the hip pains, the cough that is like the worse tenant in the world. ... those things make me even more overwhelmed because that's where the fear comes in.

there's always a fear.

Am I going to get worse?  Am I going to die?

The nightmares have returned.  Nightmares that I am actually dying and I freak out, trying to anchor myself and hold onto living.  I scare my husband because I cry out, screaming to hold onto me so that I don't slip away.  I've never had such horrific nightmares.  It's not like a monster is coming after me, no ... it's that my life is ending.  It's that everything is soon going to go dark. 

Even thinking about them is freaking me out. 

I don't want to die.  I admit it.  I'm scared.  I'm not in danger of that right now, but no one knows what's up ahead and for me?  It feels like that is lingering around the corner at any given time.

I can't help it.