Tuesday, February 18, 2014

Just Say No

If I ever find myself looking forward to taking a vacation, remind me not to do it.  Trust me, I may fight and scream and protest but it will be for my own good.  Why?  Because vacation and I don't seem to get along.  
I picked my 4 weeks of vacation during sign ups this year on a whim.  My husband doesn't have the kind of job where he plans vacations because they don't get vacation time.  So, I figured I'd pick my weeks, if he was between projects we could do something.  Or just hang out.  It didn't matter.  Anyway, after signing up for said projects, I changed up my shift to be a modified split shift of two night shifts and two day shifts.  I cancelled all but one of my vacations because February was almost upon us and the vacation had already been posted and signed up for.  I figured I could relax, work out, walk, clean house and just NOT be at work.  The last time I was off for any particular amount of time was for Cancer treatment.  So, I was looking forward to a real vacation. 
HA!  I should have known. 
February 2012, I took my February vacation ... and got a very bad cold/sinus infection which didn't go away until August-ish.  Then, came back with a vengeance in December.  Little did anyone know that was the initial flare up of my Wegener's.  
February 2013, I had surgery at the beginning of the month but kept my February vacation because I felt dreadful.  So I spent my vacation being a blob at the house. 
February 2014, Bronchitis, head cold ... no voice, horrific cough, fevers, fatigue.  

What do I deduce from all this? 

Vacation and I don't get along.   Perhaps, I should learn from this and NOT TAKE THEM!  I seem to do OK with the occasional long weekend, a random day off here and there but any long stretch of days off in a row results in some sort of illness. 

Last night I went back and forth on whether or not to call 911 for an ambulance ride to the hospital.  I was nauseous, my chest hurt, I kept coughing, I had a mild fever.  I was home alone.  It wasn't pretty.  But, I managed to stay home and feel alright. 

Today I can't stop coughing and it hurts SO bad.  

Today is our anniversary in which normally we go to Bodega Bay for the night.  We've done this every year since we got married.  We can't really afford it this year.  We bought the house, with the massive payment.  And, then we had to do so many repairs ... it's just not in the budget.  So ... we won't be going.  It's sad to me.  I love that one night getaway so much and I cannot begin to tell you how much I was looking forward to the big bathtub and the hot tub.  Especially right now with my congestion.  Also the heat would be wonderful on my body.  

Even being sick we went the last two years.  I remember getting a massage in 2012 and being congested.  I was snotty all over the place.  Nice image, eh?  Well, it's true.   But, the massage was wonderful. 

Last year, I had just received the cancer news and received an emailed copy of my bone marrow biopsy results so ... I think my mind needed to escape just a little bit. 

I think I still need a mental escape.  To most of you, you probably don't understand why I want to go away.  My husband doesn't.  He doesn't look forward to going away anymore, he says.  He is happy to own a home, he is happy to work on the home and that is how he wants to spend his time.  Well, for me ... home is kind of like my hospital room all the time.  I am here, I am sick.  I am taking medication.  I do dishes, I do laundry, I sweep, I vacuum, I cook ... wash, rinse, repeat.  When you're sick like me ... there's not much in the world to look forward to.  I see the same things every day, I hear the same things.  I work in an extreme stress environment ... an  extreme stress NEGATIVE environment.  

So, naturally, I'd want to step outside my usual life for a day or two.  Different scenery, different air, different rooms, different buildings.  A break from the routine of my life.  

I feel like since I got sick that was taken away from me.  I haven't gone away since I was diagnosed.  I haven't had an escape from this.  I haven't had a chance to NOT think about it.  Its in everything I do here at home ... and just for a weekend I'd like to not be at home.  I'd like to not be in my life, my routine, my sickness. 

I say weekend because I've learned I shouldn't take off any longer than that.  Remember the beginning of this when I talk about vacation means feeling like ass?  Yea.  So ... hopefully someday soon, I can go away for a weekend.  Get away and see something different for once.   I miss that.  I miss even the short day trips, just to get away from this for awhile.   I NEED to get away from this!!!! 

Maybe next year.  Maybe someday.  

Monday, February 10, 2014


"Mt. Everest is obvious to climb because it's there, it's a mountain.  But personal Everests, you can't see them, and the journey to the top of the mountain and back down is frought with hazards and no one can see them but you."  - Tom Hardy

Anyone who knows me, knows I have an unhealthy obsession with the actor, Tom Hardy.  Well, I wouldn't call it unhealthy.  He's a brilliant actor and he's drop-dead gorgeous.  Quite literally ... gorgeous.  Go on, see for yourself.  I'll wait .....

He's my mulligan.  The only one on my list.  You know the list, the list of celebrities it would be OK to sleep with if you're married/spoken for, etc.  It's a thing ... at least here in America.  The reasons it's OK to have a list because there is NO WAY in a million years these things would actually happen.  But, hubby knows, if Tom Hardy came knocking on my door I'd be gone with him in a heartbeat.  Peace out California!  I'm moving to London.  haha.  Anyway, I have one person on my list and it's him.  He is the list.

Anyway, I didn't come here to write about how wonderful, amazing and talented Mr. Hardy is.  No.  I came here because of something he said in an interview. 

There is a YouTube clip I found of Tom Hardy and Kenny Ross sitting down and talking.  It was about the Prince's Trust, a drug/alcohol rehabilitation program.  During the clip, Tom says the exact quote I printed above about Mt. Everest. 

His words hit home.  It was the first part of the video where I stopped drooling and day dreaming about those blue-green eyes and really HEARD what he said.  It spoke volumes to me.  If only I can begin to make you comprehend what those words meant to me.

I have my own personal Mt. Everest.   I have cancer, two autoimmune diseases, and a bout of depression.  Before all this sickness came into my life, I was trying to lose weight after being a dumb teenager and even stupider adult.  For the first time, I was feeling good and happy.  I was losing weight, gaining strength and doing this all the right way.  No fad diets, crash diets, pills or anything else other than eating right and exercising.  And then?  It all came crashing to a halt. 

It felt to me like someone took my world and flipped it on it's head.  For awhile, I spent time wondering what I had done in my life to be so horribly punished.  I questioned everything in my past.  I reevaluated every action I did every single day.   

So I have this shit.  It's not going away.  I'm just under one year of cancer remission which is a positive thing but ... the rest of the garbage remains.  I have yet to make my Wegener's sit down and shut up, and the Hashimoto's isn't helping.  Depression?  Well, it kind of goes hand in hand with everything listed above. 

So now, I stand at the base of my own personal Mt. Everest.  OK, since the cancer is in my rear view mirror right now, maybe I've already started climbing a little.  I gained weight at the beginning of this, adding to what was already there, I've found 40 lbs I never wanted to have.  I weighed more than I EVER EVER EVER want to see again.   This didn't help my continued journey to the top of my metaphorical mountain.

But, I've geared up for the next leg.  I haven't had a single drop of soda for two months and I was a soda junkie.  No, I am not making light of a name used for drug addicts.  I was a junkie.  I think I replaced the blood content of my body with sugary soda pop.  But, now I am at day 67, no soda.  I'm well on my way to 3 months.  I had sugar pretty cut out for a week and since my birthday have been struggling ever since.

Today is day 2, no sugar instead of fruit.  Once I get to 30 days of no sugar, I'll cut out the bread/pasta gluten shit.  After that?  I tackle dairy.   These are little obstacles on my way up that I can easily overcome.  These are not the major hazards along the way.    Those are just things I am trying to do to help with my journey.

I wish I could meet Mr. Hardy, more than just for how good looking he is.  I wish I could meet him and thank him for what he said.  I want to thank him for putting exactly what I am going through into words.  It's my personal fight.  It's my own journey, and there are things that are going to come at me and try to throw me off the mountain.  Only I can get through them, because only I am the one that can see them. 

Thank you, Tom Hardy.  Thank you for doing that interview.  Thank you for putting yourself out there in all you've had to overcome in life.  Thank you for doing what you do, making great movies (one of which became one of my all-time favorites) and being a positive role model to others who may have been in your position.   Your words meant more to me than I think I can ever properly explain. 
Since I won't ever meet you, saying this in my blog will just have to do.  Thank you from the bottom of my heart.  Sometimes it feels like there isn't another soul on this planet who understands what I'm feeling ever day and then ... then I saw that interview.

To be honest, I've watched it every morning, just so that I can hear that quote, so I can be reminded that everyone has something they have to get through.  Even people as wonderful as you.  It helps me get motivated to do what I need to do.

I've lost 7 of those 40 extra pounds.  Yes, I have more than 40 to lose, but I'm only focusing on what this illness has given me.  Once I overcome that ... I'll feel like I can do anything. 

Thank you.  Even if you never hear this ... Thank you. 

-One of your biggest fans on the planet,
Nicole Grace


When I was a young girl, I was obsessed with turning 17.  Whenever my friends and I would play pretend, if you will, I was always a 17 year old girl.  Seventeen was this magical age of teenagedom, I would be beautiful, confident and happy. When I was on the verge of actually turning 17, it was a weird feeling.  Like ... what would the year hold for me?  What was in store? 

Believe me, I had NO idea what was coming my way. 

I turned 17 on January 14th, 1997.  On February 10th, less than a month later, my mother died. 

Seventeen was not a magical age.  Seventeen sucked. 

For most of my life, I'd known my father was sick.  I knew he had a disease that could kill him at any moment.  Ambulances and hospital visits were regular parts of my life.  My mom and I often talked about what it would be like to lose my father.  My mother had lost her own father when she was 14.  She was trying to prepare me ... but ... she didn't prepare me for what was actually going to happen.

My mother died from a raging form of pneumonia.  It was a freak thing.  I never in a million years would have imagined pneumonia killing a person, let alone someone with virtually NO health problems like my mom.  She never drank, she didn't smoke, she ate well ... She wasn't some frail sick person. 

I'd screamed and cried in the dead of night as a child, scared that my parents were going to die.  Where my child's mind got this was beyond me.  My mother promised me that she would be around to bother me for years and years. 

For a moment, when Mom died, I was angry.  She'd lied to me.  Didn't she?  She promised she'd be around forever, but she didn't stay.

I got over that.  The anger, I mean.  There's a part of me way down inside that still screams and cries for my mother on a daily basis.  Not that I don't love my stepmom with all my heart and think of her as my mother.  It's just the loss of the relationship I never got to have with my mom.  We were like oil and water, we fought so much.  I would hope that by now we would have come to have a better relationship. 

I was 17 when my mom died, and it's been 17 years since she's been gone.  This is the exact same amount of time that I had her both alive and dead.  My brain is having a hard time reconciling this fact.  Soon, I will have been without her longer than I was with her.  It's strange. 

I'll never forget her though.  She brought me into this world.  She was my mother.  I miss her daily, and I love her very much.   

Saturday, February 8, 2014

All the Small Things

First order of business for this entry ... It's RAINING!!!!!!!!!!!!!!!!!!!!!!!!

This is absolutely fantastic to a multitude of reasons.  Shall I list them for you?  First and foremost, we desperately need it here in California.  While the rest of the world is being pummeled by the Polar Vortex or whatever weird weathery name they gave it this year and we had nothing but sunshine.  Sounds wonderful right?  Sure, the beautiful days were wonderful.  I walked outside, I got fresh air, it was beautiful. Except, we had no water.  Lakes were drying up, revealing long ago mining towns or houses that had been covered up in these man-made lakes.  Reservoirs were now in danger.  We needed the water.  So ... California can let out the breath we were holding just a little bit, we are getting some rain.  Some ... haha.  It's been raining non stop for over 24 hours and happens to be pouring right now.  It won't completely alleviate the drought concerns unless it stays at it for the next month but ... it's something. 

Two:  Napa and Sonoma County are known as WINE COUNTRY.  We need to be able to water those vineyards to keep our main source of local income alive.  Granted, wineries are well funded enough that they can get water to take care of business but ... it we truly run out, well ... they may have a problem too.

Three:  I LOVE the rain.  I am a girl who enjoys the seasons.  I love the fresh smell of Spring, the gorgeous summer days, the crispness of fall and then our rainy stormy winters.  This year ... summer never really came and we've been living in a perpetual state of springlike weather that continued through Christmas.  It's very hard to enjoy the Christmas holiday when it's so sunny.  This isn't Australia!   So, my soul is alive right now, listening to the sound of the pounding rain, smelling that unmistakable smell of rain.  Oh man, this is fantastic!!! I'm listening to the rain come down in sheets right now and I really love it.

Alas, this feeling isn't mutual across the board.  I've seem posts about what the rain is doing to ruin the lives of those around me.  Not literally ruin their lives, I'm not talking about people who are actually suffering.  No.  Not those people.  I am talking about those people who are that small of a person that they feel that this rain is a personal slight on them.  Ahhh, please.

The world is a dark, stormy, evil place, but it's also really great.  It's like 2 for 1.  For every horrible thing, there are two great things.  Sometimes, it is good to see outside your own bubble at the real world and remember how good we have it.

Especially for my American peeps.  We live in a free country.  Free to post things on Facebook that drive others nuts, free to make comments without fear, free to wear and do what we want.  This is a great place to live when you look at the big picture.  It might be changing for the worse, but ... we can still hang on to some of our rights.

Anyway, being doubly diagnosed (and then diagnose with even more since then) really makes me look at the world through a wide angle lens.  I see that my bubble is tarnished, but the world around me isn't so bad.  What's happening to me, is just happening to me and those directly connected to me.  It doesn't make the world a bad place.  

I've learned to appreciate the tiniest things in life, puppy snuggles, a quiet evening, a hearty laugh, good conversation, listening to the sound of the rain.  I appreciate the bigger things that afford me the life I lived, a good stable job, good benefits.  I appreciate life, because I know there is more out there then me.

Yes, I also get caught up in the crap that's happening inside my bubble.  I've let it weigh me down, I've let it affect how I look at the world.  But, I always pull my head out and look at the world again.

Monday, February 3, 2014

Ouch, that hurts

I think my brain needs a vacation.  It overanalyzes EVERYTHING.  Well, my body needs a vacation too but, it's my brain and imagination and thought processes that gets derailed and ends up sending me into a pit of despair! (cue Princess Bride scene ...)

I really really try not to think so much about what I CAN'T do.  It may not seem like it to those around me, but I spend a lot of time talking myself out of being in the "poor me" mode.  Which, quite honestly, I shouldn't have to.  I need to have a few poor me moments.  I'm entitled to it, I think.  No.  Probably not. 

I don't know.

What I mean is, sometimes, I'll see/hear something that either sends me thinking about what I am being denied in  my life right now, or ... something that inspires me to lock myself in a room and write my book for hours on end. 

It could be something small, everyone banding together to do a half marathon.  I am proud of all their accomplishments.  It makes me want to have some sort of accomplishment.  And by that, I don't mean getting out of bed without feeling sick, or ... going a whole day without the world whirling around me, ignoring the fatigue that pulls me down, stopping myself from hurling.  No.  Those aren't accomplishments.  Not to anyone else. 

Yes, I walk 3 miles a day pretty much.  Yay me, right?  No.  Because right when I feel good about that, I'm reminded that others "RUN" more than that.  So, what I do isn't anything to be proud of. 

Another instance was earlier tonight, I was picking up dinner for the night crew and saw a man in a suit, sitting at a table with his little boy.  They were each munching on their burgers.  The little boys legs swung back and forth under the chair, he gazed up at his dad in a way only children do when they think their parent is THE coolest thing in the Universe. 

Where do you think that sent me?  Surprisingly, multiple locations!  I was saddened, wondering where Mom was.  Then I was warmed wondering if it was just a father/son special occasion.  Then, I remembered a little boy who I love very much (my husband) not getting to have those special moments with his father.  Then ... of course, I remembered my Dad taking me to see "The Land Before Time" just the two of us.  I can see that moment SO vividly in my mind even though I was 8 years old and it was 26 years ago.   Of course, that just made me miss the man who shaped how I loved.  And then ... then I remembered that I may not get to have children.  I may not get to send my child off on a date with his/her father. 

See what's going on with my mind?  I thought all those things in a matter of seconds. 

Thinking on that last one rips me up. 

I LOVE seeing the children on Facebook, kids of my friends, kids of long distance acquaintances.  I love watching them grow, reading the anecdotes of their lives.  Yet, it is like pouring salt in a wound every day.   Will I ever get to share cute photos of my own children? 

Not any time soon, I can tell you that.   I already feel bad enough for my dog that I can't give him ALL the attention he deserves.  Although, our long walks help him just as they help me. 

My heart hurts.  It hurts for everything that has changed in my life, it hurts for the future that has been altered beyond repair, it hurts for the door that was slammed in my face recently when I asked for help, it hurts for my missing parents whom I would give the world to talk to, it hurts for the life that I've lost, it hurts for the life I won't be bringing into this world.

I wish my brain didn't work so well, like the rest of my body.  It would keep me from thinking all these things that make my heart ache.

Alas, I guess this is all part of being alive. 

The pain.

If that means I'm still capable of feeling emotion ... then I'll take it.