Sunday, April 27, 2014

Sunday night musings

Inspiration can come from very unlikely places. I may have already touched on something similar in this blog but I don't know for sure so ... Here we go again! Inspiration. It could be for whatever you want/need to do. For me? It's writing. I've always wanted to be a professional writer, a novelist, a storyteller, whatever. I've LOVED writing since I was a kid. So for me, I see stories pop out of the most mundane every day objects.

Awhile ago, gosh ... It's been years, I was in this hobby shop with my ex husband.  He was looking at RC car accessories and I wandered off to the plush toys and fantasy items.  There was something there that spoke to me. A story spun it's web in my mind and I've carried that idea with me for years.  I've seen this same item more recently and the story was still there.  Why have I never sat down and written it? 

Because I'm scared. I'm highly critical of books. I like good books so I'm hesitant because how could someone like me be able to write something that would be good enough to publish? 

I'm a realist when it comes to the ways of the world. The writing being sent in to publishing houses is probably SO good and SO established. Why would someone take a look at something from a no name person like myself? 

This is me being hard on myself.  I am hard on myself. I'm harder than anyone else possibly could be! It's not necessarily a good thing. A little criticism is OK but I take it too far. 

Speaking of which, I started a new program today. I ordered a month of ore cooked, flash frozen food that is 88% gluten free and only meat and veggies. I am to eat only this and some nuts and a teeny bit of cheese. I need to walk daily, drink lots of water and hopefully start to get rid of some of this excess me.

I need to get over my sugar cravings, and getting away from so much bread and gluten. By the end of the month, I should be well into my new lifestyle.  The food plan is good for my disease, it will help me actually start to burn fat ... And we ALL know I need to lose weight. 

I'm hopeful I can stick with it. I don't want to be in this body anymore. I can't stand the sight of me. This is not the girl I was... And I intend to shed this shell and be that girl again. In more ways than just how I look.  I was more optimistic back then. I felt full of hope and had all these dreams.

Let's get her back. 

Who knows, maybe a thinner me will also be more confident about sending my writing into a publishing house? 

You never know!! 

Friday, April 25, 2014

Seeking Mr. Sandman

It's almost 10PM. I should be asleep. I work at 7am tomorrow. 

So why am I still awake? 

Is my mind a whirlwind of thoughts, twisting and tangling into a giant ball of mess similar to the Christmas lights that were just thrown in a box? It sort of feels like it.  They've been tangling for awhile and as much as I think I've got them worked out... I don't.

I had a phone checkup with my general doctor earlier and there was no masking the pity in her voice. It's why I like my general doctor but at the same time it sort of bothered me.  I don't like pity. It's a reminder of what I'm going through and how I'm not being the strong, inspirational character I set out to be.  Instead, I am this person to be pitied. I don't want that.

I don't want any of this. How many times have I typed those very words in this blog? I don't want this. But, honestly, who does? Who would actually want my life? Maybe the good parts are desirable. I do have some bright shiny spots. Alas, the dark, tarnished ones are overshadowing the good parts.

In an effort to be more positive, I will look at the good parts of being yanked out of work for a few days ...

Dan and I started watching "Once Upon A Time" and just finished season 1. I loved it because I absolutely love Fairy Tales and Princesses, Dragons and Knights in Shining Armor. I'm still very much that little girl waiting for the Happy Ever After. I used to daydream of being a Princess.  Someone would swoop in and rescue me from my life. Anyway, I love the show and wish I had another couple weeks off for us to watch Season 2.  It's definitely inspired me to get back to my writing. 

I did a lot of reading while I was sidelined these last two days, watched some movies and a marathon of Most Terrifying Places in America. It makes me want to go on a road trip and visit them all.  Did I mention my love for all things haunted?!  Even just to see all these amazing old buildings and places with legends attached to them... That would be enough for me. 

Tomorrow I will return to my normal life again, headset on, body poised and ready in my 24/7 fight or flight posture.  It will be good to be back on track but, part of me is reluctant to jump back in. I'm always reluctant after these medical setbacks. I don't want people to look at me like I'm anything different than I used to be.  I always feel like I walk back in there with a big sign exposing me as a weak sick person.  Ugh. It's just part of this life right? All I can do is put a smile on my face and hold my head high. As long as I do my job as good as I always have I'm good ... Right?

It's probably why I can't sleep. I don't want to face the judgment, silent or otherwise. I want to go back to flying under the radar.

Well goodnight world, I need to try and get some sleep.

Wednesday, April 23, 2014

Chumba Wumba, 50/50

"I get knocked down, but I get up again ..."  Remember that song? 

My life is the reverse of that.  I get up but I get knocked down again.  Every time I start to get a good head on my shoulders, a good plan in place, and feel positive about moving forward ... SOMETHING happens.  

Is it any wonder I get so frustrated at times?  Alas, I also do everything in my power to find the positive in everything so ... I will try to do that now.  I am alive, and what happened this time isn't serious ... yet.  Nor will I allow it to get that way.  

There's a funny and painful thing that happens when you are sick.  It becomes very apparent who your friends are.    It sure makes life easier in the long run when you are able to know without a shadow of a doubt that you can count on some ... and to not even bother to ask for anything from others.  

As of today, that lesson is finally hardened in the cement of my mind.  Maybe that will help me move forward from here carrying a lot less expectation of some people in my life.   Will they notice?  Probably not because I don't show up on their radar unless I'm "needed".  

Anyway, I've spent the day as I was instructed, drinking fluids, and sitting on my ass.  I did, however, get all the laundry done, got dishes out of the sink and into the dishwasher, paid the bills and ... watched a lot of TV.  A lot of TV.  I caught up on the DVR, I watched a wonderful movie called "Quartet".  It would probably be boring to most people I know... but I loved it.  It is about retired British musicians who all live in this special retirement home for retired musicians.  There's some old friends and a little drama between them ... and a lot of ol' people humor. It has a bunch of wonderful British actors that I love ... it was just a sweet, wonderful movie.  It made me miss being a musician with EVERY inch of my body (and there's a lot of inches here!).    I also watched what has joined the ranks of my favorite movies.  "50/50"

I've mentioned this movie here, it's about a young man who gets cancer and all the turmoil that comes with it.  There's the initial denial of things ... then a fear of death, a temper tantrum about being sick all the time, finding out who really cares about you and who you need to remove from your life, etc.  It's a really good movie.  If you haven't seen it, go watch it now.  

Are you still here?  I said go watch it.  

Today has been a day of reflection, it started with me falling into a pit of despair about being knocked down on my ass again.  It morphed from there to just wanting to get some things done since I had a list of stuff to get done today.  There was a moment where I almost returned to the ER because of a sharp sudden popping pain in the area of the infected kidney.  I had a long bout of anger, realizing something about the people around me ... and now, I'm contemplating my bedtime.  

Just what will tomorrow bring? 

Another day of ordered rest, another day of water drinking, another day of antibiotics and  painkillers.  But, will I be able to wear my positive hat, or will I be a bitter betty again? 

If you're reading this, and unafflicted by cancer or the bastard that is Wegener's ... take a step back and look at your life.  Look at all you have done.   You may be thinking that you haven't done all the things you wanted to ... but look at what you HAVE done.  Look at it for real.  All the way down to the teeny tiny minuscule parts.  

Cherish and hold onto every tiny detail.  Tell those that you love how much you feel about them, how grateful you are for their presence in your life.  Life is short, it's unpredictable, and can end in an instant.  Tomorrow is no guarantee.  Even if you think you are living the most honest, pure life that you can ... it doesn't matter.  Everything can change in a heart beat.  

Believe me, I know.  

Monday, April 21, 2014

I am a writer

I read somewhere that if you write every day, even if it's just a diary entry like this, you can call yourself a writer.  Well ... guess what?

I am a writer.

I write everyday.  I may not post here.  Sometimes, it's just in my novel, sometimes it's in a regular bound journal.  I write daily. 

My thoughts are a twisted jumble inside my head sometimes.  My brain has ADD when it comes to organizing those thoughts.  I try to focus on one thing and then ... poof, before I know it my brain has gone off on it's own tangent somewhere.   I often have to write what's on my mind.  It could be a total word vomit just to get stuff off my chest/mind.  Sometimes, I just don't feel like venting to people around me.  I guess this blog would also be considered a way to vent. 

So ... I guess I achieved one of my life's goals.  I'm a writer.  I'm sort of a published writer.  I had two articles published in our local paper when I was in high school.  I don't know if that counts.   Oh, I'd love to see my book in print, on the shelves in the wild.  I think I could die happy at that point.  It's a dream I have had since I was a child, the only one still sort of attainable if I hunker down and put my mind to it.    Woo!  Go me.

In other news:  I felt pretty darn awful last night.  I had the chills, my head felt like it was in a fog.  I slept like a rock.  I overslept and missed my workout at the class but ... obviously my body didn't want to hear my alarm going off.  I came to work early and have been sucking down the water like I am in a desert. 

My throat is KILLING me.  The left side nodes feel all swollen.  Which is a little unnerving.  I haven't had something lumpy like that in my neck since my tumor hung out in there.  But, those thoughts will not be taking root.  I think I'm just starting to get a cold or something.  But, man, it hurts really bad.  It's getting hard to swallow.

No.  I'm not calling my doctor.  It's just a cold. 

Yes.  I know I need to take different precautions than a normal person but, it's just a cold.  I know it's a cold.  I don't feel like anything else is going on there that would need my doctor to get involved.   This comes from having a very good understanding of how my body feels since I've spent the two years analyzing every little twinge inside me.

I'm off on Wednesday and Thursday.  I have a lot of home chores to do so I will be close to home to get the rest that may be needed if I get sick.  I can do the most important of the chores and then spend the rest of the time on my ass.

I shake my fist at my body.  I had such great plans for this week.  Working out daily ... now it will just be walking daily (and my squats).  I'm on day 5 no soda.  At day 7 the sugar will be going bye-bye.  At day 14, bye bye bread!   I figure if I do this in sections, it will make things easier. 

Do you know what I want to do right now?

Doesn't that look heavenly? 

Man, I really don't feel good.  Damn you germs!!!! Stay away!!

Anyway, I was just wanting to come here and make this wonderful revelation.  I am, in fact, a writer!   Maybe if I say it enough, I'll get past this writer's block and get back into that novel so that I can get some rejection letters to frame for my house.  After all, J. K. Rowling was turned down a dozen or so times before anyone paid attention to Harry Potter. 

Anything can happen if you believe it can. 

Now.  I need to believe. 

I am a writer.

Sunday, April 20, 2014


This morning, while in some downtime at work, I was endlessly "window-shopping" in the Kindle Store on Amazon, I came across something that made me snicker.  (No, I don't have a penny to purchase new books right now but I love to find new books to add to the several hundred book Wish List that I have saved in my account.)

I was searching for books on Cancer patients.  No, not factual tales, but fictional stories involving a character with Cancer.  I read "The Fault in Our Stars" and while it was an Young Adult book, it struck me right through to my core.  I felt something while reading it because I identified so much with the characters in the book.  It doesn't matter what type of Cancer you have ... we all fall under the same umbrella with all this life changing, mind-altering crap.  I like reading the fictional stories because most of the time, they aren't completely about the illness.  There's some other great adventure paralleling it and I like to just sort of go on their adventure with them.  Anyway, so that's what I was looking for ... books similar to that one. 

I digress.  Anyway, I was scrolling through and saw "Cancer: a Beginner's Guidebook" and I literally snickered.  Seriously?  A Beginner's Guidebook?  Is there a mid-level book and then, for those seasoned Cancer patients The Advanced Manual?  Who would get to read the advanced one?  People with their 2nd and 3rd occurences?  Those who are terminal?  Or is that strictly for doctors to read because it would be chock full of medical terminology that only those "in the know" would understand?

I wonder what the Beginner's Guidebook would be about? 

Chapter One:  So, you've got Cancer ... sucks to be you.   Because, honestly, that's how the world looks upon diagnosis.  "This Sucks" and everyone looks at you with sad, pouty eyes, instantly feeling nothing but sympathy for you.  Would it talk about the options?  Therapies?  Medications?  Is it a solely medical book about how you'll fight the battle with science?  When I first heard, I wanted a book that was frank about things.  For example, Jenny McCarthy wrote a series of books about pregnancy, childbirth and raising a child.  She wrote other books too but the book on Pregnancy was one of the best books I've read.  No, I've not been pregnant, but ... if that day ever came I would be prepared for the WEIRDEST stuff!!! I know she covered more than what is in most pregnancy manuals.  I know people who are thankful to her book for making sure there were no "surprises." 

That's the kind of cancer book I wish I had.  If I ever have a relapse, and this time have to go the route of chemotherapy, I plan on writing a book just like that.  A book that is open and honest about what happens to ones body while on chemo.  I've seen it with other people but ... I want to share the real truth of things. 

I mean, I kind of did that all with this blog.  Only, I just had radiation.  I felt tired.  My neck felt hot.  There's only so many ways you can write about fatigue.  I can't even really write something about the effects my medication have on me.  It would be short and extremely boring. 

I don't know.  That book made me laugh.  I am sure it is a great source of comfort for people.  Perhaps not even the people who have the cancer. Sometimes, literature is more of a comfort to those who have loved ones with Cancer so that they may understand what's happening. 

What's next ... Life, a Beginner's Guidebook. 

Chapter One:  You're born. 

You were born!  You can't see, feed yourself, speak or do anything for yourself.  Hopefully the person in charge of making sure you survive to be able to care for yourself is competent and won't fail. 

No pressure, right? 

Cancer isn't like that.  Well, your life is in someone else's hands but ... hopefully your doctor paid attention in school and continues to learn so that he/she may find newer and better ways of helping you stay alive. 

Anyway, I just thought I would share that laugh with you all.  It brightened my day a little and I hope that I could do the same for you. 

Saturday, April 19, 2014


If only life were like a dry erase board.  Oops, I screwed up, swipe, erase, start over. It would be so much easier! Granted, everyone would have everything they wanted and there would be no reason to work harder to achieve goals but still ...

I'd like a do-over. 

Life is pushing at me. It's pushed me to my breaking point sometimes. I stand at the intersection of the current path I'm on and some other mystery road and I wish with everything I have to be able to turn and run down that road into who knows what. 

Multiple times a day I wish I could get in my car and drive off, only a burner cell phone in my pocket. I'd leave the traceable phone behind. No one would find me. Just ... Go.  

That would be running away though. Unfortunately, I know enough to know that it doesn't solve a damn thing.  Problems follow like a shadow. Especially mine. Mine are like crappy luggage. If I ran away tomorrow, I'd still have dumb ass debt, I'd still have cancer and I'd still have Wegener's. See? Not much point in running off.

Wouldn't it be nice though?! 

I could slip into some new town, a nameless face in the crowd. Maybe I could have a whole new story.  I could be some happy girl with a happy past. No health problems. No baggage. Just me. 

I don't want to leave the people in my life. Hell, I even love my job. It's just that I'm not living. 

I want to run away ... Far far far far away. It's not the adult, mature, responsible thing to do.  Ugh. I want to press restart on everything.

I'd gladly take a fairy godmother right now. She could bibbity bobbity boo some stuff into a better situation, I'm punctual, I'd get back by midnight. I promise. 


Damn. A girl can dream. I feel like that's all I have left. Daydreams, fantasies, any small shred of time where I can escape things. 

It's still not enough.  Real life is a crapshoot and I rolled crappy. Not completely. There is good in all this stress but sometimes it's hard to see it.   

It's tempting to go, run, flee, escape.  But, it's just a fantasy. It will stay that way. 

After all, I don't run. :) 

Friday, April 18, 2014


Everyone wants to think they are strong.  We all want to feel like there is nothing we cannot accomplish.  It doesn't matter what the ability is or what obstacle you overcome to be viewed as strong ... we ALL want that.  If you're denying it right now, trust me, your moment will come. 

For me?  I set out on this journey determined to do it with a smile.  Do you want to know why?  Well, I'll be honest.  It was so when I die, people will comment about how strong and positive I was.  I will inspire others that no matter what life throws at them, they can smile and keep battling on.  

Weird aspirations?  Sure.  But, who doesn't want to leave a legacy behind them? I bet even the shiest person wants someone to remark on their lives when they are gone.  It's human nature.  We are always trying to be "known".  

I wanted to be strong.  I wanted to be positive.  I still tell myself daily to be strong and to be positive.  I smile all the time.  It doesn't always mean I'm bubbling over with happiness or even just contently happy.  No.  Sometimes it's a well placed mask because ... this is my battle.  I don't need to be moody, upset, angry, tired, mopey, whiney, mad at the world, on the outside.  Moods are contagious and ... if I was that way, it would spread.  I'd rather plaster a smiling mask on my face and hopefully brighten someone's day.  

But, I'm not strong and a lot of the time, I'm not positive.  Sometimes, I don't want to do this anymore.  I'll admit it.  What's the point of fighting against something that is never going to go away?  But, ultimately, I don't want to die either.  

I'm made of porcelain and not iron.  I've got quite a few cracks in me now.  Lately, it's been harder to hide those cracks.  

Outside influences have broken down my shell.  Other people's moods have made it extremely difficult to keep walking tall, keeping this smile firmly in place.  This is where I know I'm porcelain.  If I wasn't ... I wouldn't care about what other people do.  I'd just keep going. 

I listen to people complain day in and day out.  I listen to them pointing fingers and shoving the blame from them.  I exist in a world with less and less accountability.  

There is a ton of strength and credibility in admitting when you are wrong, swallowing the humble pie and moving on.   It's also a chance for people to learn life lessons.  It would even make them ... get this ... stronger.  

However, I am not responsible for their actions, and I will be damned if I continue to let myself be affected by those actions.  

Anyway, what I meant by all this is, I'm not the brave warrior fighting the battle of my life that I set out to be.  I'm pretty darn weak.  I am admitting it.  I admit I had a lot of deep rooted depression prior to all this happening in my life.  That certainly didn't help.  

I gained weight, I gained what I'd recently lost and then some.  I'm well aware of what I should look like.  Weight, diets, exercise, ... it's all thrown in my face and shoved down my throat every time I look at Facebook or sit near anyone.  Everyone is seeking some sort of accolades for their exercises.  They want the compliments, they want the glory.  I get it all ... I understand it.  I am not telling anyone to stop talking about it.  But ... it's pointing a very large finger at my fat ass all the time in my head.  Yes ... if you read that sentence right ... I said it was in my head.  I'm not telling you you're calling me fat.   

I'm fat.  

I was a thin child, a thin teenager and now a fat adult.  I was doing something about that when everything fell apart and it has been the biggest battle of them all to get back on the horse.   I fight that battle EVERY DAY!  I am in a position where I know what I want to do with my lifestyle changes ... but am lacking in the funds required to get that off the ground. 

I've started saving tiny bits here and there, but it's going to be a bit.  I've been walking where I can.  I do squats and planks every day.  Nothing's changing.  I am not losing weight.  I still look absolutely hideously disgusting.  I can't stand it.  I can't.  

And it really doesn't help when someone who is very close to me makes comments about it.  

I feel like lately, one part of my support structure is more like a toothpick.  If it was a rock like the others ... those comments would never be made.  There would be more of an effort to actually help ... versus destroying what little confidence is left.  

See?  I'm fragile, porcelain, sensitive.  I'm not that smiling pillar of strength.  

Honestly?  This is fucking hard, pardon my french.  It's hard.  It's hard to want something you can't have, to know you can't even entertain that thought for another two years, to be surrounded by it, to see people who take it for granted, to be in debt so badly that you can't take a day off, to feel desperate to get more hours when in your mind you desperately want to rest, to feel like you're being held down by an invisible weight every day, to feel nauseous, to feel aches and pains, to feel like you have to push on and on and on like nothing is wrong purely for everyone else's benefit, to feel like you're being pulled in two directions: one side telling you that you work too much, the other half saying you need to work more.  

It's damn hard.  I live with Wegener's every day, dealing with all my symptoms and the shit that comes with that.  But, I feel like I walk every day, looking over my shoulder for cancer to come back.    I realize this every time I do my blood work.  Will there be a spike?  Is this when Dr. Zhang calls me to come see him?   Will I be able to sail away from it as easily as last time?  

I lost my mom when I was 17, my little brothers were 5 and 6. This is why I am not pushing for adopting a child ... I live in absolute terror of doing that to my children.  It would feel selfish to bring a child into my family knowing I live with something that could take me out.  I know fate can step in and kill us all ... but I have a much greater chance of dying than most of my friends. 

I'm an obese porcelain doll.  You don't see those on the shelves, do you?  No.  They wouldn't sell.  But, it's what I am.  It's what I am dealing with.  I'm not strong like I want to be.  I won't leave the legacy I want to behind me.  

But ... it is what it is.  

Wednesday, April 16, 2014

Milestones, Tests and the Sleepies ... OH MY!

April 15th, 2013 was my final radiation session so ... 

April 15th, 2014 marked one year of cancer remission.  

Yay, right?  

I would have liked to have been in a better mood on that day.  I've made it a year with no reoccurrence of the blasted M-protein.  It's a big deal.  I celebrated by having all my blood work done because I've been feeling so miserable.  My cancer remission continues ... I got an email today from my oncologist that there is still no sign of the M-protein.  

That's fantastic. 

Now, if only I could feel as good as I did before February 2012.  I'd even take how I felt in the summer of 2012.   At this point, I'll take how I felt a few months ago.  Because, even then things seemed a little bit OK.  

Has Boris, my disease monster, ever gone into hibernation (remission)?  It sure hasn't felt like he's ever truly gone away.    Part of that is attributed to the side effects of my medication, the other part is my in-ability to slow down.    So, I've still been fighting away, daydreaming of a time when I'll know what that normal feels like again.  

Maybe Boris did hibernate for awhile.  If he did, is he awake again?  Is that what this is all about?  I did that bloodwork too. 

Want to know what I found out? 

I don't know. 

The trouble with Wegener's is that it doesn't have it's own blood test.  There's a series of blood tests, all of which are looked at as a whole and then a determination is made.    As usual, the majority of my blood work was squeaky clean. 

For example, you might look at me and see a fat girl.  I bet a million scenarios run through your head ... high blood pressure, diabetes, high cholesterol, ... any number of conditions associated with being overweight.  

My blood work has never shown that.  Aside from Hashimoto's (which is finally managed by my thyroid meds), my numbers are beautiful.  Perfectly low, perfectly in range.  My EKGs have always been gorgeous.  That's what made everything so damn puzzling when all this was happening.  Nothing was showing.  

The only time there's ever been an indication of something amiss in my blood work is my antibody test, and my CRP (C-Reactive Protein).  And, as usual, those numbers are not in range again.  In fact, the ANCA (antibody) is on the rise.  

I know this isn't a 100% indicator of the disease activity.  This is a very well known fact for people who have to deal with this butthole of a disease.  It's a lot of knowing how your body reacts and ... listening to it.  

Yes.  Listen to your body.  If only I could practice what I preach, right?!   I will when my life affords me that chance.  Until then, I must keep pushing forward.   

Anyway, it was a minor relief to me to see those numbers on the particular tests.  No, I don't want them to be going up.  It's just that I feel something isn't right ... and when all the other tests were coming back in their usual healthy numbers I was getting frustrated. 

I've worked too much in my life.  This isn't the first time I've worked a bunch.  I've never had this fatigue, this complete inability to move forward, except when I was in the midst of all this diagnostic process and during radiation.  Sometimes it feels like I cannot even pick up my feet and walk.   This isn't just being tired from too much work.  

Remember that part about knowing how your own body works?  It's true.  Only we know when something is TRULY not right.  For me, I really know.  I've become an expert on how my body normally functions and when it's misfiring.  

I've been in remission with Cancer for a year, I'm still going to bat against Wegener's, and ... goodness gracious I AM FREAKING TIRED!!!!!!!  I should already be in bed but ... I don't have a lot of time not working or doing laundry so ... I'm sitting on my couch and enjoying the quiet, except Loki is snoring.  

I hope that next year at this time, I'll be writing about a two year milestone. Maybe on that day I won't have to do my blood work to try and find out why I feel so lousy.  I will be thinner, I can promise you that.  

Monday, April 14, 2014


Have you ever tried to walk in Jell-O? I haven't myself but I imagine it would be impossible to do.  It's like thick and gelatinous ... hard? 

I feel like I am trying to walk in Jell-O today.  I haven't felt this amount of fatigue in at least a year.  I know it's that long because that was when the fatigue was the worst ... during my radiation treatments.  When I walk, it's like there is a current pressing against them, making it difficult to have any sort of forward motion.  It's amazing I was able to get what little walk I had earlier today in!  I'll admit I was happy when my dog signaled that he was done walking.

I didn't even wake up for my class this morning.  I really wanted to go too.  When I opened my eyes, I grabbed my phone to check the time and gasped to see that it was 0930am.  Oops.  But, apparently, I needed it.  Even waking up at 0930 was only 8 hours of sleep.  It's not like I had this marathon of snoozing.  I got off work at 1am and wasn't in bed until 0130.  I laid in bed and felt pretty darn good, but when it came time to sitting up and functioning ... well, that's where everything changed.

I don't hope this doesn't mean anything ominous.  I don't want to be having a "flare".  My nose has been bothering me something fierce lately.  It feels ... well, I'm not really sure how I can describe it.  Sometimes, I feel as if I have a massive sneeze coming on, only I know I am not going to sneeze.  Then others, it feels like the air I am breathing in is ICE COLD even though the air around me is not, in fact, cold at all.    Some days it just plain hurts alllll day, throbbing, or aching.  It hurts today.  But ... it's different. There's more ... I don't know.  It feels like I am breaking down. 

This came up yesterday during my stress-fest.  I am working too much.  I am going to hit a wall ... I'm worried that things are going to go downhill and fast and I don't know what the repercussions are.  This could all just be because I've worked too much ... it could all be because I haven't got really good sleep for awhile.  Honestly?  That is what I am hoping this is .... but I'm still fearful.

I got off easy when my disease presented itself.  The only damage done to me was that I gained a bunch of weight.  That can be fixed.  All of my vital organs work the way they are supposed to and I can function like a mostly normal person. 

My fear is if it comes back ... what if I think it's just exhaustion and don't go to the doctor?  What if there is irreparable damage this time around?  Kidney failure?  Saddle nose?  What if I don't prevent something like that from happening. 

You'd think, since I have this, that they could catch it before it goes that route.  However, I'm not your normal patient.  I don't just work 40 hours a day, 5 days a week.  I work 10-16 hours a day, 7 days a week.  I work in a high stress environment, I deal with drama non-stop all day long and not just in my job duties.  I'm not in a good place as far as all of that goes.  So ... it's only natural that either a flare will happen because of environmental reasons or ... because I brushed it off as being sleepy.

Do I want to run to my doctor every time I have a pain somewhere?  No.  But, I don't want to not go and end up in trouble.  

Sometimes, I just don't know what to do!

Sunday, April 13, 2014

Oh Bother

Like my pal, Eeyore, I'm having a gloomy day. 

Bad days happen.  For me?  Sometimes, they snowball and before I know it, the bad day is an avalanche and I am underneath it, gasping for air.  Today is one of those avalanche days.  Many a dark thought has crossed my mind today.   Too dark, in my opinion, it's like the door opened and I slipped into that bleak, vast, space.  Don't worry, I merely stepped a foot inside, I'll get back out of it. 

Like most people, it all comes down to the money.  Isn't that always the case?  Ugh.  Unless you're independently wealthy or EXTREMELY famous, there's just never enough of the greenbacks to go around.   However, in my case, that should NEVER happen.  Not that I am rich in any sense of the word but ... what I make should more than cover it all. 

Except when there's too much to cover.

An exceptionally large house payment (Thank You Sonoma County for being so desirable and downright impossible to afford), 1 car payment, 1 lease payment and the various sundry expenses that come with needing to spruce up a "Bad Flip".  Of course, there's frivolous crap that I am shamed to admit.  And ... tax bills!  Yippee!  I'm so happy to live in America where I make good money so ... I PAY MORE TAXES!   I'll owe this year too, just add it to last years and make this a never ending battle of wills between me and the IRS. 

Unfortunately, when things like this happen, a carefully constructed paper mache shell cracks down the middle and everything comes spilling out.  Things that I've worked so hard to lock away burst forth and want to take center stage.  Forget the money, forget the bills ... remember me?  Your bloody disease? Remember me?  The sad thoughts about your weight?  How you're not pretty enough?  Remember how you feel like just a face in the crowd?  No one would care if you weren't here anymore, you stupid girl.  Life would go on like you never existed.    You'll never have kids ... hear everyone happily talking about their kids ... you won't ever have that .... You'll always be that "sick girl" ... on chemo drugs, fat from steroids and bad food choices, too tired to go work out again, too quick to let an excuse get in the way of what you need to be doing.  Yea ... that's you.  You're a loser.

Yea.  It's not pretty. 

So that's the kind of day I'm having.  I lost my shell.  Everything is smacking me in the face, then in the gut, a swift kick to the rear, oops, I tripped.  It's like a million voices in my head screaming at me and they aren't saying nice things.  

No I'm not hearing voices like that.  It's a metaphor!!!

Imagine walking down a hallway, picture your standard movie high school hallway.  It's crowded with people and you're walking down the middle.  All of those people are turned towards you, in your face, screaming at you.  They say the most AWFUL things.  That's what it feels like in my head when I have these days. 

What a stark change it is from the previous entry, isn't this?  I was aware of the things that were GOOD about me.  I owned them.  Because, in my heart of hearts, I KNOW there are things about me that are good, and I KNOW those things listed above aren't true.  Why?  Because whenever I have those dark, twisted, macabre thoughts, there are two faces that flash in my mind ... two distraught upset faces, a six year old and an eight year old ... I can see their faces as clear as a summer's day ... as clear as if they were sitting in front of me.  I made a promise that day that I would NEVER do anything to hurt those two little boys.  So ... no.  I'm not ever going to do anything bad to myself. 

Anyway, I know that the things my brain wants to tell me aren't exactly true.  But, sometimes, I can't fight against them and I fall victim to myself.  I get mad at the world, I get upset at myself, I wonder what I did to deserve the things that have been done to me.  These loud questions drown out the little voice that is trying desperately to be heard saying "But you still have it better than other people ..."   She gets lost in it all.

I know that most of what is weighing on me isn't forever.  Bills will eventually get paid off, a house can be refinanced to lower the payment.  Some of it will stay with me forever ... case in point, the disease that lives in my immune system, lurking in the shadows and waiting to take shots at me, or ... the ominous cancer cloud that hovers in my peripheral.  I have to learn to live with those things .... or die. 

Bad days happen.  This won't be the last time I feel like this.  I just hope that I learn better ways to deal with it.  Maybe allowing myself a few moments of self pity, maybe an afternoon of laying in bed with the covers pulled over my head.  I know I need to stay out of that dark, shadowy place.  It's not good for me. 

Time to pick myself up by the collar, dust off the dirt and grime, shake off the dark cloud dancing around my head, stand up straight,  shoulders back, eyes forward ... "Chins up, Smiles On"  and get out of this funk.  

In 24 minutes it will be Monday ... Sunday will be behind me.  Here's to a better day tomorrow!

Thursday, April 10, 2014

I Rock.

Last night, I wrote a post on my iPhone, while lying in bed, after taking a sleep aid.  While reading it this morning, I spotted a few typos and autocorrect working it's magic in other places.  Oops.  Note to self: No more blogging while taking sleep aids.  However, at least it wasn't some clearly off the wall blather.  It's all very true.

I'm not meant for this anonymous life.  No, I don't exactly want all the fame that comes with being in some sort of performance life.  I just want that life.  I want to create.   Play a role, sing a song, play a tune, change it up, different places, different faces.  I want to be doing what I love.    And, while I do actually LOVE my job, it's not the dream I set out for as a child.  It's not what I thought I would be doing. 

None of this is. 

I know there are people out there who have big dreams that never came to fruition.  I'm not the only person living a life less like the one they imagined.  But, it's weighing on me a lot.  That's what happens when life hands you something that makes you take stock of your life as it is, and how it would be remembered if it ended. 

While trying to correct my own personal mistakes of letting people have control over my moods and emotions, I've done a crap-ton of thinking.   I've learned a lot about myself.  I think I'm pretty darn awesome as a whole.  Yes, I'd change a few things like losing weight (which I can do), maybe a smaller nose.  But, I'm pretty cool.  I love to laugh, I like to crack jokes, I want people around me to be happy.   I've been through some stuff in my life but, it doesn't define me.  And, I'm doing my damndest to make sure this dumb illness doesn't define me either.    I'm tough.  I'm not fearless by any means but ... I'm not a total fraidy cat.  Just a small one.

I'm wise beyond my years but behave stupidly at times.  I know that.  But, my brain is in the right place.  I know things.  I'm street smart.  I'm pretty book smart too just ... please don't ask me to do math.  Math and I had a volatile relationship in school and now we have that kind of relationship based on pure necessity.  I don't allow Math into my life more than he needs to be there.  

I'm a good person.  I have a good heart.  I think I have a pretty pure heart.  I love people for the mere fact that they are people.  I don't judge people based on their skin tone, sexual preference, weight, hair color, religion, or lifestyle beliefs.  Everyone is different in their own way, and ... every has a battle of their own that they are facing.  I'll never say that I have it worse than someone ... because to me my battle is huge, but to them, it could be small and whatever they are dealing with seems HUGE.   

I don't judge people from our initial contacts.  Most of my opinions come from experiences I have with people.  Piss me off and I'm probably going to stay mad for a long time though. 

Anyway, I think I'm pretty awesome, but ... I'm not going to go around advertising that.  There are some things that need to stay quiet.   And, I think I'm awesome on the inside.  The kind of awesome that is kept to oneself.  I'm a good person, I live an honest life.  I have a passion for the arts ... but that's not in the cards for me.  So, these things will continue to be hobbies of mine (in-car concerts anyone?) that make me truly 100% happy.   And, if I don't lose those things to this illness (vocal cord damage, hearing loss, blindness) I'll be a happy girl.  

And to touch lightly on the acting thing ... I will be expecting the Academy to call me any day now with my Oscar nomination.  I mean, I am really good at pretending there is NOTHING wrong with me when everything is going wrong.   I do it a lot.  Because, in all of this awesomeness and enlightenment, I have some very bad days.    However, those are for me to deal with ... no one else needs to deal with.

Long story short, I wish I could be out there doing something bigger ... that way, when it all ends I can look back and know I did everything I could with the life I was given.  Maybe I'd make a bigger mark ... it wouldn't be just me fading off into the distance, leaving only a hole at work with a lot of overtime to cover. 

I rock at being who I am I guess.  That's going to have to be OK.  I can be a movie star or rock star in my own mind.  I can daydream of going on a book tour, seeing my work in print.   Dreams are good.  I'm not letting go of mine ...

You shouldn't let go of yours either.

Wednesday, April 9, 2014

Shoot for the Stars

Do you know what I wanted to be when I grew up? 
A police officer?
A fireman?
A veterinarian?
Sure, I entertained the thought of all those things while growing up. But, I was pretty certain I would be in the performing arts.
Do you know what my real dreams were?
I wanted to be an actress
I wanted to be a broadway pit orchestra musician OR play on those big EPIC scores for movies.
I wanted to sing.
I wanted to be a published author. 
I wanted to create and perform and transform dreams and visions into reality.
I LOVED being on stage. For someone who's shy like me, it's weird that it would all go away when those stage lights hit me. 
I miss being on stage, I miss rehearsals and performing. I miss the applause and the recognition. I miss me. 
I am lucky to have a good job. However, this was never my dream.  There may have been a slight (ok serious) adoration for law enforcement and crime solving. But, did I ever say I wanted to forsake all those dreams for it?
I'm 34 years old. Some of those dreams are downright impossible to even go after now. I haven't regularly played my saxophone in years. But when I last picked it up, it was like my fingers magically remembered where to go. With a little polishing I could be back how I was. But for what? To play in my bedroom? 
I love singing but, I don't think I'm good at it. Sure, I have excellent timing, rhythm and can learn the words and tune of a song very quickly. But ... You have to be good to get anywhere. 
I'm too old to break into acting.  And that's the least of my road blocks there! Have you seen me? I'm definitely not what you'd call "screen worthy".
I write. And I write. And I write.  I've been writing stories since 4th grade.  I've always wanted to be published.  I have a manuscript that is 200 pages long. 50,000 words. It needs some major fine tuning and there's a gap in the middle where I got stuck but, it's something.
But will I ever get it published?  Who knows? It requires more time and focus from me.  I wish I had days I could sit down and actually focus on writing.   Turn on some Hans Zimmer and have those musical scores inspire me. Id block everything else out.  I bet my book would be done and being mailed out to whoever would listen In a heartbeat. 
I do wish I'd tried to chase one of these dreams a bit more fervently. I should have held on to them.
Now I'm 34, with a broken malfunctioning body, an almost finished manuscript, BIG daydreams of being on the screen and a good job that takes up all of my writing time. 
What if always comes to mind. What if I'd didn't this or that? It can make a person sick thinking like that. But, it's true. 
Sometimes, (ok ... All the time) I don't feel like I'm living my life. I'm watching from the sidelines because the real me is not working like this.  This is not my life.

"Live the life you imagine". Well that seemed albeit inpossible.  I want to live that life I've been imagining since before I could remember. 
I had so many dreams.  Big, life altering decisions. Why did I let those slip from my finger tips? Is it too late to get them back

Don't give up on your dreams no matter how insignificant you feel it is. To someone else that could be the last thing they hope for. 

Thursday, April 3, 2014

I can.

And I just can't keep living this way
So starting today, I'm breaking out of this cage
I'm standing up, I'ma face my demons
I'm manning up, I'ma hold my ground
I've had enough, now I'm so fed up
Time to put my life back together right now!  - Eminem "Not Afraid"

Who woulda thunk it?  Eminem lyrics as an inspirational quote.  Maybe it wouldn't be your first choice but, this bridge always gets me feeling energized and motivated.  In fact, I listened to this song 5x yesterday between the drive to work and the drive home.  I just kept hitting the back button and listening to it over and over again.  I have a VERY short commute so ... I did what I could. 

Eminem may seem like a hard lyricist to understand and find inspiration in.  I have to thank my musically gifted ear to be able to learn and memorize song lyrics very quickly.  Eminem is always a challenge for me but ... when you actually hear the words, his songs are very good and not just about bad words. 

Anyway, I've really had enough of the drama and stress in my life.  Yea, I have said this before.  I'm a broken record.  But, I've had it!  It's getting SO old!!! I keep thinking of running back to the Peppermill ( )and hiding out there for a few days. Not once while I was there did I think about anything going on back here.  I even pretended there was nothing wrong with me! It was wonderful.  Alas, here I am ... back in the routine that doesn't quit.

My body is angry at me.  My joints are starting to speak up, vying for attention over the wall of fatigue.  My right shoulder has moments of extreme pain and last night, I could feel every joint in my body from where my skull sits on the top of my vertebrae down to each individual toe.  It wasn't fun.  I wanted to go sink into a warm bath but ... my bathtub is only a good bathtub for people who are toddler sized. 

It could be stress.  Stress does have a way of affecting our bodies in ways we wouldn't think.  Stress would give you a headache, sure, but it can also give you the flu, a cold, a heart attack, and ... joint pain?  I don't know.  My bastard disease monster, Boris, likes to eat my joints to.  It could be either one.

Monday evening, my dog decided to cough, do a weird reverse sneeze thing that sounded like was dying, shake, pant, pace and whimper.  My husband took him to the vet, they didn't see anything wrong so he came home. It only got worse.  I sat awake all night watching him, wondering what was going on.

I know I don't have "kids" ... I can't have them.  At least not any time soon and who knows when that will all change.  Right now, my animals are all I've got.  My dog has been my constant companion during all this disease diagnosis.  He's not a registered service dog but he sure has been my emotional support.  I am not ready to let him go.  It was a loooooong scary night.

We took him to the vet first thing Tuesday morning and they scoped his nose, his throat, did x-rays, etc.  The vet things there may have been a foreign body in his nose or throat but he'd already expelled it.  She found inflammation and mucuous in the nasal and throat passages so she flushed it out.  She also noted a neck injury on the x-rays.  He's now on antibiotics and prednisone (like dog mom, like baby dog), and isn't supposed to jump on and off the furniture.  (This hasn't been easy)  He is at the vet today for observation since I came to work and Dan was working.  They are going to keep an eye on him to see if he does it again.  

It just keep being one other thing going on.  I am trying so hard to get my life back under control.  I need my routine again.  I'm giving up my split shift and going back to my regular Mon-Thu 3pm-1am shift.  It's not dayshift, but ... it will be a routine.  I need to get regular sleep.  I need to have a regular 4 days in a row shift so that I may incorporate working out back into my daily life.  I need to have a regular schedule to get my diet back under control.  I need to lose weight.  I need to lose A LOT OF WEIGHT.

An old friend is a consultant with herbalife ( ) so I was looking at their products.  I also looked into ( ) because I think I need a structured program to get me on track.  Doing it on my own at the beginning allows me to stray off the path.  Too many options to choose from ... so I choose badly.  Do you see what I'm saying?

I don't know, we'll see.  I'm not exactly in a financial position to get any of these products.  But, I don't want that to be just another excuse that keeps me from getting on track again.  I know I can do this.  I was doing it before.  I am perfectly capable of losing weight, working out, eating right.  I just need to get on the horse again and I need help doing it.

I need guidance because of everything else I have to take into consideration.  I am admitting I need help this time.  Until I can afford those programs, I need money to get some dang groceries to at least try to eat better in the meantime!!!

I just need a change.  Something's gotta give.  I need to get back on track, I need control again.  It will help me feel like my life isn't spiraling down the drain!!!!!

As it said at the beginning, ... "Time to put my life back together right now!"