Friday, January 31, 2014

Choking on my humble pie

I'm not a rockstar in any sense of the word.  I'm not a superhero. I am not some fantastic excellent person who stands above everyone with greatness.  I'll never be nominated for the Nobel Price or whatever.  But, I've prided myself on being a certain way for a very long time.  I operated on a different set of rules than people around me.

Not anymore.

I've tried.  I've pushed and pulled myself through regular life, even though I should have paid attention to certain limitations that I now had.  Earlier, I blogged about how I was handing in my cape and that I couldn't be a superhero anymore.  Well, it's gotten even more worse than that.

I can't even be a lesser version of me right now. 

I feel like this disease is ruining everything.  I know what it's ruining in my own personal bubble but it's also destroying the dreams of my spouse, and messing up the lives of the people around me. 

That's just fantastic news. 

Really.  I love ruining everyone's life.  (No, not really, that's sarcasm people.)

If I take a step outside my determination to live as I always have ... and look out at the big picture, there's a very startling point that I've been ignoring. 

Death.

Yup.  The ol' pal that came onto my radar at the beginning of last year.  No, I'm not 'terminal' but ... I have a very serious condition that just happens to be caught in the early stages.  My fear comes from the fact that I still to this day have yet to feel better and ... I feel worse and worse every day.  I honestly feel like I am tumbling backwards down the hill that I fought so hard to climb up. 

I make myself walk every day.  I make myself come to work when I'd rather curl up in a ball in bed and sleep.  My body craves sleep more than I can explain to you.  You wouldn't understand even if I could find the words.   But, I don't.  I get up.  I move.  I keep hoping that the daily walks, the fresh air, the good feeling of moving my body will help ... and then every evening it comes crashing down upon me like a crumbling brick house. 

Honestly, this scares me.  It scares me that every day I feel worse because I don't know what it means.  It's a disease of many faces.  It presents itself differently in different people.  I don't know if it's going to rear up and fight back against my medications, tossing my ass into the hospital or worse.  I don't know.

Not knowing what's going to happen is the scariest thing on the planet.  I think I am in control and am constantly, daily, hourly, reminded that I have absolutely no control.  I've been doing really well avoiding getting the germs floating around dispatch.  But, I think they've caught up to me.  Today I feel worse than I have in months.  I keep having a small dizzy spell where everything feels a bit lopsided, or does one whirl around me.   My ears hurt, my throat hurts, my eyes are on fire, and I have that stupid headache when you are getting a cold.  You know the one.

What does that mean for me?  No idea.  It's not like I can just stay home for a week and rest.  I do have a vacation this month.  If I can just get to that week and a half I will spend my days walking, and then resting resting resting because I don't want to die.

Yes.  I can die.  I can die from this.  It's not a cold or the flu.  It's not indigestion.  Roll your eyes all you want and THINK you know what is wrong, but you don't.  Get irritated with changes that may be made on my behalf because ... well ... I could die.  That's right ... I'll either be here or I won't be alive at all.  Because that's a reality I could face.  I don't fear that in the very immediate future because I feel like I'm still in a position of doctors coming up with the right cocktail for me.  But, if things get worse, that's something I need to take into consideration.

Have you ever had to stop and think about that? 

Ugh.  I hate that my life has been reduced to this but, it is what it is.  It's time that I start accepting that I will not chase my dreams, I'll ruin the dreams of those around me and ... I could end up in a mahogany box ... just a memory.

OK, I'm being especially morbid but ... I don't want to ruin anyone's life anymore.  I don't.  I don't want this.  I want things to go back to the way they were before. 

I don't want to be broken. 

Wednesday, January 22, 2014

Get in your cage!

Now begins the daunting task of trying to put a harness and muzzle on a giant black fire breathing dragon, and to drag said dragon into a cage. 

I dusted off my fitbit flex, charged it and put it on so I can track my sleep. I started a notebook, keeping track of how I'm feeling, any exercises I did, how much water I drank. I'm logging my food, tracking macronutrients and trying to stay in a good calorie range. I cut out soda almost 2 months ago and for the most part only eat natural sugars. (I had sugar today but won't be doing that again. I need to get that sugar part under control and then I will remove gluten and wheat products.  I will make sure I get adequate sleep, good sleep.  I must do some sort of movement every day, except on those days where it's physically impossible. 

I posted hours of unwanted Overtime at work, because as much as I want to be an animal, I can't. I'm terrified of the flu, and need to spend less time in the recycled, recirculated air at work. 

It may seem like I'm "tracking" too much but, I need to get a new routine under control. Then, maybe the harness will make it onto the dragon. The sleep will muzzle it and the healthy eating and exercise will start to pull the dragon in the cage.

I'm so tired of being sick. Especially since it's like ... I'm able to function, so to the outside world "I don't look sick".   I miss my old life. I miss the things I took for granted. I miss hiking and mud runs. I miss Disneyland. I miss dead lifts. I miss the days when I didn't have to obsess over every detail, when I didn't think about the people around me and the germs they have. 

I won't lose this battle. Someday, I'll look back and say that I don't miss these days.  Someday ...

Monday, January 13, 2014

On the brink ...

Tonight I stand on the edge of a cliff.  One more step and I will leap from this cliff to the next platform in front of me.  I will turn a new corner.  I will embark on a new chapter.  I will climb a new mountain.  I will ...

Ok, that's enough metaphors.

Today is my last day of being 33.  33 sucked.  The year started shitty, continued shitty ... and even though there were some tiny pieces of shiny glitter in the shit, it was still shitty.  Sorry for all my bad language.  To sum up, I was not a fan of being 33.  Cancer, Wegener's, Hashimoto's, radiation, surgery, biopsies, medications, weight gain, injections, IVs, pills, antidepressants, a team of specialists, a whole new vocabulary.  That is what I feel like sums up my year of being 33.  My great birthday gift from the universe was that I would now be this sick girl.  I hate it.  I hate everything about it.  I hate what my life has become.

So ... tomorrow?  I wake up 34.  I will be in my mid-30s.  Will I suddenly be cancer, Wegener's and Hashimoto's free?  No.  But, at least this year I already have them and I can look ahead that there is hope that being 34 will be better than 33 was.  I'm eating better.  I haven't had soda in 40 days.  No processed or added sugar? 8 days.   I can say I already don't crave sweets.  There has been a massive carrot cake in dispatch that everyone is raving about.  Nope, haven't even had a nibble.

I am not where I wanted to be at this birthday.  Hell, I figured I would have been at my goal weight for my 33rd birthday and then some.  Heh ... no, I get to start ALL over again with some extra weight on top of that.  But, you know what?  It's not important.  I need to focus on my health.  My health.  Being alive.  Being ABOVE ground.  SO I'm fat ... get over it.

I want to have a good year.  I want to.  But, I'm leery.  I still feel shitty.  I'm on high alert from the deadly flu virus and the fact that people just "try to power through" and come to work while being very ill.  Hey thanks for putting my life at risk, I really appreciate it.  I'll send you the bill when I can't make my house and car payments because I'm in the hospital.  I can't feel better yet.  This depresses the hell out of me.  I try ... but ... every day is the same ol' crap. 

Maybe when I turn 35 I'll be in a better spot. 

However, ... for now ... 33 is over and I face 34 feeling a little bit hopeful.


Friday, January 10, 2014

A girl in a bubble

Are there places that make human sized bubbles? 

I'd like to place an order if there is.

I'm a little worried, folks. h1N1 has decided to rear it's ugly-ass head again, in my area, and is taking lives without care.  Including that of a considerably healthy, 23 yr old male.  I'm not considerably healthy. I would be one of those people they would consider to be "at risk".  You know the ones .... small children, the elderly and those with chronic illness.  Yay, me.   I can't begin to tell you how it feels to be lumped into the chronically sick category.  I love my life, not.

I don't want to even attempt to face that battle.  I'm already fighting against my regular health. I'm doing everything I can to stay healthy.  My hands are cracked and dry from hand washing, hand sanitizer, anti-bacterial wipes for our community desks here at work.   I try not to sit with the people who are trying very hard to get a lung out from where it's supposed to be sitting.  But ... I can't avoid them forever.

Case in point?  I think my husband has the flu.  He just called me very sick thinking he had the flu.  I can't exactly NOT go home.  I mean, my dinner is there in the refrigerator waiting for me.  I have no change of clothes, I wanted to shower and wash my hair tonight so I don't have to wash my hair in the morning for my early shift.  I have to go home.  I live there!  I guess I could sleep on the couch. 

I wish people would remember what's going on with me.  I don't talk about it all the time because it seems like this forbidden topic.  Honestly, no one wants to hear about it.  I learned my lesson there.  I've seen enough eye rolling and winks to last a lifetime.   But, I'll listen to their endless stories of their lives for days.  Whatever.  It is what it is.  Anyway ... I wish people would stop and think.

Colds?  I get it.  I'm not asking people to think of me with colds.  It's the blasted flu that I'm concerned about.  I'll pay you for the shift differential or loss of half time pay you miss from your overtime because you're sick.  I will.  Anything to keep me from getting the flu because I don't want to lose my life.

This is stressing me out.  I don't need stress. 

I know I could be freaking out over nothing.  I mean, I've managed to NOT catch the colds that have been around me.  I'm just a little on edge about this damn flu.  I've never been in the "at risk" category at all.  Ever.  I was a healthy little bean until now ... and now?  The flu scares the shit out of me.  Pardon my French.

Anyway ... I need to find a plastic bubble or maybe a tent I can put over me. Then, everyone can come in with their germs if they want and I'll be safely tucked away in the bubble, safe from their coughing, hacking, sneezing, fevers, chills, etc. 

Just call me the girl in the bubble.  Hmm, maybe I can fly like Glinda in her bubble.  No?  Well, a girl can dream.

Sunday, January 5, 2014

I'm handing in my cape

This has been a tough day. It's been a day of deep thoughts, hard conversations and ... A slap in the face reality check. 
It's time for me to be an adult. In 9 days, I turn 34. Really? That's like, my mid-thirties. That's like serious grownupness. When I was a kid, 34 was old! I don't think that now. 34 is the new 24, right? Anyway, I'm very much a grown woman and, quite frankly, I haven't much been acting like one. 
I need to face reality. Reality is all around me, all the time.  I'm not well. I feel it every day. I want to lie in bed and sleep the days away but, I pull myself up, head off to work 12-14-16i hour days in a very high stress environment. I feel a physical change in my body while I am there. And, a lot of the time, it makes me feel worse. 
I was cleared to go back to work and hit the ground running. I had felt like a major burden in the beginning of the year being off, calling in sick and was bound and determined to not be a burden. I wanted to fall right back into the role of smiley workhorse, always reliable, always there to work.  I could feel my body rejecting this notion with everything it had, but I kept going anyway.
When all the crappy feelings started to get worse and I found myself at the doctor being told my disease was "smoldering" I felt sick. Emotionally so. Shouldn't I be in remission at 4 months in? Cancer is in remission. Wegeners won't let go! I pictured in my head a forest fire that was now smoldering. My body is a pit of glowing embers. Right now? I have one solitary fireman spraying water on a giant forest of embers, That's my medication. The other fireman? Sleep, rest, mental health breaks, fresh air, walks outside, healthy diet? They've not been called to the scene. 
If I allow this one fireman to fight it alone? I could end up with a fire that is out of control and be in a far worse situation than I am.
So, changes have been set in motion to allow these other fireman to join in the fight.  These changes mean some other decisions needed to be made about my job, about our bills, about everything.  I found myself crying very hard today about things.
I have tried to please everyone. I have tried to keep everyone else happy and unburdened by my disease. Where did that get me?
People don't believe there is anything wrong with me, and I'm not getting better.
Why are they more important than my life? My life is what happens when I am NOT at work. And, I'm too sick and miserable to enjoy anything when I'm not forcing a smile on my face to make everyone else around me happy.  It's exhausting and I can't do it.
I'm sick. 
I have a major disease.
I have cancer too for crying out loud! 
It's time to put me first. It's time to think of me before ANYONE else. 
I don't want to die. I sure as hell don't want to die living for everyone else. 
It's a giant leap but, I'd rather jump and make it to the other side than be pushed and fall into oblivion.
This is my life. I'd like to be alive to live it.

Wednesday, January 1, 2014

What will 2014 be?

The first day of a new year.  January 1st, 2014.  New beginnings, a chance to say "this year I'm going to ...".  People make resolutions to change or do something different this year.  Lose weight, run a half marathon, change jobs, whatever.  For me?  I am just hoping that I have a better year this year.

OK, last year wasn't ALL bad.  I mean, I did get to buy a house and I leased a new car.  I managed to get through the year, made all my payments, etc.  All the while feeling like death was trying to grab ahold of me every day. 

I want this year to be different.  I want this year to be better.  I don't want to be at the hospital all the time.  I don't want to have this scan and that scan.  I don't want to be reminded all the time that I am sick.  I want this year to be about other things.  I want this year to be about GOOD things first and foremost.

I have a few resolutions but ... some will take a minute to get going.

I want to make dinners and lunches at home every day. 
I want to save money by getting groceries and using them. 
I will stick to the non-inflammatory diet.
I will continue to drink a gallon of water a day.
I will continue to not drink soda pop/cola/whatever you want to call it.
I'll stop obsessing about my weight and focus more on my health.
I will stay on top of my laundry and chores
I will work less.
I will get outside more.
I will read more.
I will be happier. 

Of course, today is not the only day to make resolutions.  You can make them anytime.  Those are just a few of the things that I want to incorporate into my life starting this year.  I need my stove to be hooked up before I can really get on board with number 1. 

I hope this year is better than last year.  I hope to start to FEEL better this year.  Even if I never feel 100% ... I'll take 50% at this point.  It's exhausting trying to keep up appearances when I feel like this and it is exhausting to feel like this.

So, here's to 2014.  May it be better than 2013 in a lot of ways.  I mean, after all, I'm gonna be in my mid-30s in 13 days.  Something has to be better than that right?  Of course, that means I am still here, still getting older. Above ground is better than below ... I have to remember that.

OK, 34.  You can come.  I'll allow it. 

Happy 2014!!!