Friday, December 12, 2014

Peel back the curtain

For the last 24 hours I have heard my most favorite sound off and on. There is nothing quite like the sound of pounding rain. I don't really know why it is so cathartic for me, only that it is. Honestly, I've needed the rain. Even without standing out in the middle of it, it washed away so much that's been dragging me down.

I feel like I'm starting to be able to peel back the curtain of depression. Yes. I still feel pretty shitastic everyday but, that's not changing and its not benefitting me to let it get to me. I've tumbled off the wagon of "eating clean." I've gained 25 lbs. I've been lazy (not restful) and just a miserable excuse for a human being.  This is not the person I am nor is it someone I want to be.

There's so much good in my life when you look past the bad. So I'm fat. What of it? I'm a good person. I have a big heart. So I have an incurable bastard of a disease. That's my problem. I'm fighting to stay a cancer survivor. I own a home. I am a hard ass worker who despite hours and hours of angry callers, difficult people and drama is still smiling. Even on 16 hr days, 80 hours a week.  I'm so much more than what people see.

I need to get back on the horse and turn that stallion back in the direction of my dreams.

I have a finished book that's had one rewrite. I need to do another. I'm not convinced its ready to go to the editor. I also don't have $500 to pay her yet. I have two other manuscripts started. Two very different ideas. I miss writing. Creating characters and watching them grow and change and falling in love with their story is my heaven. I need to get back to that.

I want to be an author more than anything in the world. Call me crazy but I just feel like my name should be out there. I should be more than this. I need more than this life. Not a different life ... I just need more in it. I need to push back that voice of insecurity that wonders if my writing will ever be good enough. When I read author bios on books I've read I notice they all have something I don't: a college degree.  Well that's a bit of a drawback. I'm a 34 year old woman who works 80 hours a week. Where would I squeeze college in?
I've started writing and rewriting my query letter because I want to get an agent. I want to be a REAL, honest-to-goodness author. I want THAT to be my job.  I'd never give up my full time job. I might be there less but, I love that job too and couldn't turn my back on the people I watch over.

The rain pounded Sonoma County and washed away the evidence of a drought. Listening to that sound and seeing the streaming drops, the splashing puddles, and the whippng winds cleansed me too. It washed away the top layer of sadness. It rejuvenatdd me and reminded me that I was making a go of going after what I want.

Yes I feel like my life will be very short and that's not gonna change. It just means I need to get a move on. I need to leave more of a legacy behind. I need to make more of a mark on the world.

I think I can get back on track. Baby steps, you know?

Step One: follow the doc's orders of clean eating, 0.8mg injections of Methotrexate once a week,  lots of water, and sleep.

Step two: write. Write. Write. Write and then ... Write more.

Step Three: eliminate negative influences "sayonara drama!"

Step Four and the motto I keep repeating like my own mantra "just keep smiling."

I hope you have a fantastic day.

Tuesday, December 2, 2014

Hey, it's my life.

Do you want to know the worst part of being ill?  Everyone acting like you don't know what is good for you.  I feel like everyone is telling me something different about how I should be eating, how I should be sleeping, how I should be sitting, how I should be taking care of myself.  Sometimes, I think people have written me off as being completely ignorant in taking care of myself. 

Well, I am not.

I may work a lot.  But, I work a lot out of necessity.  Those of you who do not have a spouse or significant other in the trades don't understand them.  My husband isn't lazy.  He's not a freeloader or a hack.  He is a commercial electrician.  If there are no jobs currently in progress with his company, he is not working.  He busts his ASS around the house, on side jobs, on whatever he can find to fill his time. Yes, he also likes to spend money but ... so do I.  Just in smaller amounts.  Anyway, if he isn't working, I work harder to make up for it because I will be damned if I lose my house to give everyone something else to tell me how I should handle it. 

Oh, if you hadn't guessed, I am bitter.

I feel like my life is a series of minutes, hours, and days of people telling me what to do or making decisions for me.  A new change at work means people are even dictating how my days go.   So much so that I don't even really give a shit what I work.  People are just going to tell me what I am working anyway.   I've already struggled a lot recently with personality conflicts and this is only making it one hundred times worse. 

Yes, before you tell me how I SHOULD feel, I know they have no control over how I feel.  I am in charge of my feelings blah blah blah.  I know this.  But, what you don't know is that I am spending most of my time just trying to feel normal.  Normal.  You have no idea what that is don't you?  It's that feeling you take for granted when you are healthy.  I haven't felt healthy in months.  I don't really remember what it feels like.  I know there is a partial feeling of healthy and normal.  I remember that kind of.  I don't remember the person I used to be.  Even though I am here a shit ton of hours, I feel miserable.  AB-SO-FUCKING-LUTELY MISERABLE!!!!!!!!!!!!!!!!!!!  Do I tell you that?   Nope.

Why?

Let me break down the reasons:  The non-stop eye rolling from someone who I already can't stand.   The fact that I don't like it when someone has to bring up their injuries, their limitations, their whatever over and over and over and over and over.  Yes, I get annoyed at things too so I don't do the things that I find annoying.   What good would it do to whine all the time?  It's not like I am suddenly going to feel miraculously better because I didn't do anything but snivel and moan and groan about the aches/pains/dizziness/nausea/weakness/itchiness/etc of my new life.  It won't happen.  I can't even whine to my doctors.  Even as awesome as they are, sometimes they get annoyed.  Or, at least I think they do. 

I sign up for oodles of overtime.  So I am not going to whine about it. 

I sign up to work knowing that I don't feel good.  So I really try not to whine about it.

I don't expect to be treated any differently, and yet somehow I am.  I feel like everyone is trying to make decisions on how I should be doing things without ever stopping to check and see what I WANT TO DO. 

Sometimes, I feel like people in my life are benefitting from my illness.  They get to talk about it with people and get sympathy and perks from it ... but then treat me like I am 100% healthy and able to leap through hoops and do backflips.  I'm the one that is sick.  I am the one that has to feel this way.  Me.  Not you. Me.  I am the one who has to face everything that I have in my life.  Me.  Not you. 

Ugh.  I just don't know how much more I can take of a lot of things.  I need an escape.  I need a break.  I need ... I need something different.    I need to not feel like I am that sick girl, shackled to a dispatch terminal and forced to work day in and day out until I am strapped to a hospital bed fighting for my life.  But ... that is my life right now and that is what I have to deal with. 

Not you.

I want a spa weekend, or hell, just a hotel somewhere else where I can soak in a bathtub and read a book.  I don't want to hear construction noise, or loud stupid rap, or radios, or typing, or phones ringing.  I need a break. 

I need it.  Me.  The sick one.  The sick one who isn't allowed to act like a sick person. 

Anyway, I just wanted to vent that this is my life.  I am sick, not dead.  I am not a child.  I am capable of making my own decisions.  I should be allowed that much. 

I don't know.  Maybe I needed to vent more than I realized.  

Thursday, November 13, 2014

In Search of the Elusive Happiness

I'm not happy. 

There, I said it.  Right now, I'm not happy.  There are a number of contributors to my unhappiness.  First and foremost, I have a chronic disease.  I've been a relatively healthy person throughout my life so this distresses me. But, it's time I start to just accept it for what it is, take my medications as prescribed, crack down on the healthy lifestyle and realize that I am different than everyone else.  

There are some other big ticket items that are weighing heavily on me and making my sunshine and rainbows hide away from me.  In fact, I've spent the better part of last night and all day today weighing the pros/cons of dealing with these things.  Yes, I am being vague because it's something I won't talk about in such a public way.  Let's just say it is something that is "optional" and ... I'm starting to think there is no room in my life for it.  

I'm not happy when I do it.  I had this idea in my head that it would be a certain way and ... it's definitely not that way.  I tried to adjust my expectations  and still ... the discontent continued.  The results of my participation in this was also not pleasing.  This didn't help with the feelings of not wanting to do it.  Toss in a few comments, some strange practices and ... I think I have finally reached my breaking point and need to make a decision on whether I continue to have this in my life or ... if I decide to go in a different direction for awhile.

A clear indicator of this decision came when I was told I would be next participating.  I got the words and felt sick.  I didn't want to do it anymore.  It was the strangest thing. So now, its left me thinking about it non stop.  To me, the cons are definitely starting to outweigh the pros. 

Is there anything about this that I enjoy?  I don't know.  This isn't going to be something I decide quickly. It's not something that I will come to love ... because I would think in the last couple of years I would have fallen in love with it.  Wouldn't I?  How long do you give something before you realize that it isn't for you?   I have people saying I should stick with it but ... it isn't making me happy.  It's actually making me unhappy. 

And for that?  I shouldn't do it anymore. 

Life is way to short to be anything but happy.  I know this better than most people.  I feel like I am constantly walking around with an expiration date.  We all have one but I feel like mine is approaching faster than most.  It isn't about being aware that I could die.  We ALL die.  But, do you know what it's like to feel like ... it's behind you all the time.  I feel like it's my shadow.  Wherever I go ... there it is to remind me.  I feel a little off ... it reminds me.  I go to the doctor for even the most mundane reason ... it reminds me. 

Right now, I am miserable health-wise.  I want to crawl into bed right now and sleep for a week.  I am THAT tired ALL THE TIME.  It takes a lot of effort to do anything.  It SUCKS!  On Mondays, I take medicine that makes it worse.  Not to mention this last injection didn't go well and I felt 1000x worse than normal.  It was awful.  It seems to have subsided but ... Monday will come around again and I'll have to do another injection and ... start this whole process over again.   Welcome to my world.  But hey, I am still above ground, I am able to work a bazillion hours a week, and ... I can still smile even though I want to cry 95% of the time right now. 

I just want to be happy again. 

But, can I make the right decision?  Why do I feel like this isn't an easy decision? On one hand, I'd be over the moon and happy again.  On the other?  I feel like I'll regret it? Does that make any sense?  Oh, why does this have to be so hard?

Partly, it isn't.  I mean, I want to give up something.  I do ... SO badly.  But, my conscience is screaming at me that I can't.  For one, I'm not a "quitter".  Well, not entirely so.  I don't want to just "quit".  But, I am so very unhappy. 

I wish there was some sign telling me what I should do.  But, this isn't a movie so ... it's not like some little fairy is going to come into my life and guide me where I need to go.  Nope.  This is reality.  I'm on my own with this. 

Still wish there was a sign.

Somewhere out there is the right decision ... and I hope that I can find it.  I just want to be happy.  it's not that hard.  It's not like I am asking for a million dollars, but, I wouldn't turn that down if it was offered!!!!

Happiness ... please come back.  I really need you. 

Saturday, November 8, 2014

Fall down, get back up.

Anyone who knows me is aware that I am the WORST critic of my actions.  In my eyes, I can do no right.  It may not be a good thing, it's just how I have always been and how I strive to do better.  But then, there are times where I ignore that nagging voice in my head.  Yep, I completely and totally ignore it.  For instance, I just shoved a brownie in my face.  Yes, a brownie.  Is a brownie good for me?  Hell no!  It's not "good" for anyone. But, I am supposed to eliminate things to keep me from getting sicker. 

But, I don't want to! ARGH! I just posted last night that I was going to crack down on my shitty eating and do better ... today.  Am I doing better today?  Nope.  Remember the brownie I mentioned?  I'm also headed to Chipotle for lunch.  (facepalm)  I didn't bring lunch with me.  That was my fault.  I also didn't want to be stomping around in the house prepping crap while the rest of the house slept.  I made a note to myself that tonight I would prep my entire meal for the next day and come to work tomorrow prepared with ONLY clean/healthy/life saving foods.

I am completely chastising myself in my head.  Oh the names I am calling myself.  You'd be blushing.  It's what I do.  It's how I correct myself.  For once? I am not stopping this internal berating.  It will help me.  You  may think it harsh and uncalled for but ... I know me and what I need to get my rear in gear.  

It's too easy to just fall down and stay down and say "whatever, I don't care" but ... it has negative consequences.  Weight gain and ... inflammation and all the other crap that comes along with these things.  So, I must get back up, dust myself off and try again.

I tried to do a re-write on my latest book today too and that's not working.  I think I am in a negative headspace.  I was super motivated to dive in and then ... I was hating everything about it.  Which, is not the same feelings I had when I finished it.  I love the characters and I want to get back in there and fix them up ... but I am not in a good way.  I don't know why.  For the most part, I think I am in a good mood but the slightest thing is setting me off today.   Oh well, must pull it together.

I'll attempt the re-write again tomorrow.

I'll start back on my healthy living lifestyle tomorrow.

Wow, tomorrow has a lot to live up to. 

Monday, November 3, 2014

The Happy Face

See that up there?  Isn't it cute? I've been a huge fan of the bright yellow smiley face for a very long time.  It makes me smile. How can you not smile when you look at it?  It's cheery, and it's adorable, and it's smiling!  Are you smiling yet?

Why did I post this ode to the yellow face?  Well, I need to remember to keep that on my own face at all times.  I started back on my nasty gross chemo medications today, as well as starting prednisone yesterday and I find myself feeling very grumpy and punchy.   I feel like crap.  Like, horrible crap, people would normally call in sick for this crap.  Alas, I will have to do this every Monday and I can't just not be at work every single Monday.  No, I can't really change the day that I do it because I work a lot, and ... if I did it on my days off, then I wouldn't enjoy my days off either.  It's a no win situation. It's easy to remember to do it on Mondays so ... Mondays it is. It doesn't make any of it any easier.

I shouldn't complain. I really shouldn't.  There are far worse things that can be happening right now. I have a good doctor who is helping me get through this and stopping this monster before any further damage can be done.  I was the one unaware that what I was feeling was Boris wreaking havoc again.  I chalked it up to a poor diet, not enough sleep, and a plethora of germs in my periphery.  I work in a petri dish, it could only be germs, right? 

Wrong.

I'm not like everyone else.  I am not normal.  I am not invincible like I used to be.  But, that doesn't mean that I have to be upset about it all the time.  It is what it is, and it isn't going to change.  I was having dinner with the husband the other night, and I was staring at my glass of Pinot Noir, sipping it slowly and savoring every last drop since I will not be having any alcohol for the next two years.  Thinking of that made me angry.  I asked him "What did I do so wrong in life?"  And he stared at me like I was crazy.  He was right to look at me like that.   I was being crazy.

I can't chalk all of this up to be some sort of punishment for something I did in another life, because truly things have been sort of bumpy all along.   Life happens to everyone.  Whether it be cancer, or bad relationships, deaths in the family, whatever it is that comes along and stresses us out, it's not for any purpose other than life.  Perhaps, it's a lesson we can actually learn from.  Each time we weather a storm, we are better prepared for when stormy weather returns again.  I am better prepared going into this medication journey.  I knew I would feel crappy within an hour after the injection.  I went grocery shopping and chopped up avocados for future smoothies because of the impending injection.  I planned ahead because I knew what was coming.   

There's no reason for me to be pouty or upset.  This is my life, and ... even though some people truly hate this phrase, "It is what it is".  What I have is incurable so ... I better get used to this because it's never going to go away.  If I let it bother me, I'll never be happy again. 

Can I say with certainty that I'll never be upset about this again?  No.  I am sure I will have moments where I will once again wonder what I did that was SO wrong that I have to go through this.  Especially when I feel like I am a super good person.  I help people to the detriment of my own health.  I try to be kind, I speak friendly to people as much as I can.  I do have my moments of venting.  I work hard to pay my bills, they are never late, I would put food on the table if I had my kitchen back together but I don't at the moment. 

I am a good person.  Unfortunately, bad things happen to good people.  Perhaps, it's nature or God telling me, without a doubt, I am a good person.  He feels I am strong enough to weather this storm.  He thinks I can get through it.  There must be some purpose for all of this. 

So, I will do all that I can to stay on the positive side of my realities.  I will remember that bright shiny smiley face when I want to be mean, and cranky, and throw temper tantrums about how unfair life can be.  I will recall that face and remind myself to smile.  Life is unfair.  Getting mad about it isn't going to do anything. 

Nothing is too great to get past, nothing is too bad that I have to treat everyone around me badly or hate life in general.  I've been given a LOT of reasons to think that life is something to be hated.  But ... it isn't.  The sooner everyone realizes that, the world will be a happier place.

Hot Button Issue: Death with Dignity

I try not to address those big "hot button" topics that stir up opinions and emotions among readers.  It's not what I have this blog for, and honestly, it bothers me that people can be so rude just because someone has a different opinion than they do.  This is the United States of America.  Freedom of speech is one of our rights as citizens.

Anyway, I wanted to touch on something that has been all over the news lately as it sort of relates to me.  Not in the exact sense but, there is the hovering death monster on my horizon. 

You may or may not have heard of Brittany Maynard. Brittany was a 29 year old woman diagnosed with Stage 4 Glioblastoma.  She was given 6 months to live.  Her condition was not something that could be reversed by chemo or surgeries.  This was it.  She could have done chemo and given herself a few more months but, honestly, after seeing so many people go through chemo only to die ... I would think that the suffering isn't worth it. 

Brittany had chosen her date of death, and planned her life around that date.  As it approached, she was feeling well enough to not want to do it that date.  So she didn't, but then her health must have deteriorated rapidly because the next day she went ahead with it.  Brittany had moved to Oregon because she could have the option of ending her suffering.  She knew she would die anyway and chose to not go out in the most agonizing way.  I think it is admirable.

It got me thinking.  I watched my dad suffer for the last six months of his life because he chose to do chemo to prolong his life even if only for a short while.  I mean, he had an 8 year old son.  He had told his doctor that he didn't want to suffocate at the end so ... they had a plan that when he was headed down that path, he would be put in a coma so he wouldn't know what happened.  And, that's what they did.  It's sort of the same thing, I guess.  I mean, my father had a DNR but didn't actively initiate his death.

Would I do it?  I can't say.  I've had so many nightmares since my own weird diagnosis (how do you pluralize diagnosis?!)about my death and how I am not ready.  I'm not.  No way, no how.  I haven't done anything that makes me feel like I have had a full life, like I lived a good life.   Ms. Maynard ... she LIVED!  She has so many experiences and memories that most people in the world would love to have.  You can't look at her life and wish more for her.  Well, you can but ... you know what I mean.  And still, even with all of that ... I still don't know how I could actually take the pills to end my life.

Could I look around at the people with me and be like "Peace Out." even if I was headed that way anyway?  I just don't know.

I have massive amounts of respect for Brittany Maynard.  She's awesome, and strong, and I applaud her choice to take her life into her own hands and leave this world while she was still somewhat coherent enough to say proper goodbyes and do anything she needed.  It takes an insane amount of strength to be able to do what she did. 

I think this is a choice that everyone who has a terminal illness should have.  There comes a point in the process where being alive is unbearable.  Being pumped full of drugs to keep people comfortable usually only makes them loopy and out-of-it.   There's a massive amount of suffering that people can go through as the end of their life draws near.  I don't want that for anyone.  I wouldn't want it for myself.  But, I fear I wouldn't be brave or strong enough to make that decision for myself.  However, I think it is a decision I should be allowed. 

My heart goes out to her family as they face this new chapter of their lives without her.  Even knowing this day was coming would not have made their suffering any less  A death is a death.  This person is gone from your life and no one ... no one deals with that easily.  I hope that they can find some peace in their life, and continue to live the lives that she would want them to have.  Their Brittany gave the world something to hope for, and brought awareness to a situation that everyone should look at. 

If someone is truly terminal, and will die, ... and is actively dying, they should have the right to say when they are done.  They should be able to want to have their goodbyes be something they remember, to participate in.  Doesn't everyone say they wish they could have said all these things to someone before they die?  I know I did.  I still do.  I have hours of conversation I wish I could have been brave enough to have with my parents before they died.  Knowing that day was upon me ... I would have been able to actually do it.  Instead, I believed in my whole heart that if I didn't say goodbye to my father, he wouldn't leave me.  I was wrong.  He had no choice. 

Dying with Dignity is helpful to the entire family.  At least, that is my belief.  You may disagree and that is your right, remember?  But, let us also remember that our lives are our lives.  If we choose to use the Dying with Dignity plan, than so be it.  If you choose not to?  That's OK too.  Isn't America wonderful?

I don't have to face that choice right now, and I may never have to.  With Wegener's ... I figure my death will be a complete sneak attack.  You may not ever have to make that choice either. 

Wouldn't it be great though ... if you could?

Friday, October 31, 2014

Want Versus Need

Hello Boys and Girls,
Today we are going to discuss the differences between wanting to do something and needing to do something.  The two are not the same.  Sometimes, in rare occasions, someone can want and need the same thing. What results in that equation is a happy person. They are doing what they need to do and it happens to be something they want.   I envy those people.  I am going to do my best to be one of those people. 

Why?

Well, let me tell you a little story about my lifestyle changes over the past year.  Oh, I was really super smart and cleaned up my eating in April.  Unfortunately, I focused TOO much on the weight that was dropping versus the health benefits that it was providing.  I mean, I knew it was doing something for me because I felt good and stopped taking my medications because I felt better when I wasn't on the medications.  Some may say that was a bad idea but, I preferred to go 7 days a week feeling normal versus three days of feeling like a truck ran me over and 4 days of smooth sailing.  Even with how good my health was, I was still completely and totally obsessed with the weight loss portion, weighing myself every day and obsessing about every bite into my mouth.  Do you know what happens when you're solely focused on weight loss?

You fail.

I tumbled off that clean eating wagon and landed in a pool of warm, melted chocolate.  Mmmm, wonderful right?  Wrong.  I couldn't get back up on the wagon.  I enjoyed every bad horrible thing I put in my mouth.  I enjoyed it too much.  I gained back 20 lbs of the 43 I lost.  Ugh.  What a horrible person that made me feel like!  I didn't "HAVE" to eat that way so I felt like I just wasn't going to.  So there!

Guess what, boys and girls?  Someone like me?  Yea, someone like me NEEDS to eat clean.  Let me give you a bit of an anatomy lesson.  Your immune system, the thing that helps you fight colds, the thing that makes you feel crummy and run down when you are fighting off germs, that's in your digestive system.  Yes, the tubes that snake around in your belly, changing food into poop, that's your immune system.  If that's not healthy, you aren't healthy.  So ... clean eating, eating only whole foods that aren't manipulated, is the perfect thing for an angry immune system.  Non-inflammatory foods will reduce swelling in the gut.  Not to mention, Wegener's/Vasculitis is an inflammatory disease.  It can cause dangerous inflammation on vital organs. This is what needs prevention.

In light of recent events, including a scary trip to the ER, spending a week feeling miserable at home, bloody noses, a never ending scab inside my nose, feeling like there's a band around my ribcage, non-stop fatigue ... I will be getting back on my injections of chemo, and ... a temporary dosage of prednisone and ... becoming incredibly strict with my eating.  Not only will I be strict because of the weight gain factors that go with prednisone but ... my life and health depends on eating clean. 

It's a matter of need now.  Want has no part of this equation.  Sure, I don't WANT to live the life that I am.  I don't WANT the disease that I have.  I don't' WANT to be different, to be immune-compromised and a germaphobe.  I don't WANT any of this but you know what?  This is what I have, this is my life and how I have to live.   This is a need ... regardless of how I feel.

Goodbye Sugar, Goodbye Sodas, Goodbye Carbs, I might miss you at first, but I won't miss anything else about your existence in my life. 

Monday, October 20, 2014

1-2-3 Squish

Today marked my annual visit to the oncologist to make sure that everything is good.  As far as I know, everything is.  I will continue to think that even as I head down another trail of tests and exams, all purely precautionary, and yet it still just ignites that tiny spark of fear that lives in my brain.  Oh, who am I kidding? It's not a "tiny" spark of fear.  It's an elephant trying to cram itself into a clutch purse in the back of my head.   All I have to do is think something halfway not positive and the worry elephant begins his happy dance of flailing legs and trunks. 

Mr. Elephant is dancing.

It's nothing. I'll say that right now.  Let's all get together and say it.  "It's nothing."

There's been this little lump on my chest.  It's on the breastbone but not actually in the ol' boobie.  It's been there for a wee bit, and I never thought much of it but ... it's gotten bigger.  So, then I was like "Well ... I don't know that I like it being there all that much."  Before last year, I would have just said "It's a cyst" and carried on my life. But, Cancer has entered my tiny bubble of existence and I can't just shrug things off anymore.  Nope.  Now I have to have things "looked into."  I had my regularly scheduled yearly check up with my oncologist and I brought it up to him since I was there.  He checked it out and said ... and I quote. 
"It's definitely a lump.  It's definitely 'something'."  Then went to his computer and said "Have you had a mammogram yet?"  Then he said I should have an ultrasound and a biopsy but ,.. then he felt it again and said it would be too difficult to hit it just right with a needle biopsy and would be better biopsied if it was removed.  So ... he is referring me to a surgeon to have said bump removed and looked at.   And ... I go tomorrow for a mammogram.

No I don't think the two things are related.  I have a family history of cancer and should be having mammograms already, per the good cancer doc, Doc Zee.  Oh this will be a fun experience, let me tell you.  You know what else it makes me feel? 

Old.

No.  I'm not saying anyone needs to feel old by that remark.  It's not that I am being ageist either.  It has to do with this little mental bubble I live in where I am not almost 35 years old.  I have missed out on a lot of living and while I feel like my life is going nowhere ... time is still going by as fast as ever and I am staring at 35 on the horizon.  Halfway to 40.  There is a hill in the distance and I can see the top of it.  It's time to get real about my life.  It's not going anywhere.  This is where I am going to be forever.  Time to put my big girl panties on and deal with it, right?

Right.

Tomorrow I will embark on a new chapter in my life, adding a new procedure into my repertoire of procedures.  The ol' boobie squish.   I've joined that club. 

Well, here is to procedures that yield nothing, right?  My mammogram will be perfect and they will remove said annoying lump from my chest area and tell me it's the cyst I always believed it to be.  Because, I will thnk positive.  After all, cancer came out of left field when I wasn't expecting it.  It's not going to come when I am thinking it might be there again. 

It couldn't.  I mean, I am going to have to live the rest of my life in fear of cancer coming back.  That's what happens when you have it.  That's part of life.  It can come back.  It's checked in once, it's a member now.  There's no rule saying it has to stay away. 

It's just not back yet.  I am going to believe that to be true and it will be. 

This is all just routine.  My new routine.

Tuesday, October 14, 2014

Pills, pills, pills

I've never been a pill popper before. Sure, I'd take the occasional ibuprofen or "The cocktail" (2 excedrin migraine, 3 Tylenol, a Pepsi and a Snickers bar) to combat the massive tension headache that work could produce. But other than that, I wasn't a fan of swallowing pills. I wasn't good at it. Inevitably, one would get stuck in my throat causing me to gag and get a lovely taste of said chalky pill. *shudder*. However, since last year and the subsequent procedures, surgeries and joint pain, I've become a pro! Except, I still hesitate to take them.

I should be taking at least 7 a day. 3 thyroid meds, a folic acid, a multivitamin, 2 magnesium supplements. Now I'm adding in Biotin since my hair seems to have ended a relationship with my scalp. Strands of hair are jumping off my head at a higher rate than people jumped from the Titanic.  So far its only noticeable to me. Anyway. That's not why I'm writing this.

I need painkillers. Not just ibuprofen or Tylenol. No. I need something stronger. norco? Dilaudid? Percocet? Something to dull this pain and let me sleep.

It feels like the right side of me was hit by a bus. OK, all of me feels like that but it feels like I landed on my right side. The joints of my toes, my ankle, my knee, my hip, my wrist, elbow and shoulder are in agony. My knee is a balloon. The left side is mildly achy. 

Being a girl with my condition I sit here contemplating the explanation for this pain. I worked out today. But, I know that pain. I have felt uber lousy for weeks now and it could be just a part of whatever I'm fighting off or ... And this is the kicker ... It could be the bastard Wegeners deciding to remind me who is boss. Preferably its the first option. I worked out and combined with feeling like I've been at war with the common flu, I feel worse than normal.

Who knows? I was rescued by my buddy, Tom, who stayed at work for me and I got to leave. I'm beyond grateful. I just wish I had something narcotically pain relieving to help with the sleep part.

I've been battling my nose for weeks. Its painful as hell, crusty and running at the same time and occasionally likes to allow blood to just spew down my face like a leaky faucet. It isn't pleasant but it is managaable. The joint pain? Oh god this is a nightmare. I feel like a hunched over old witch. I walk like I am a lead on The Walking Dead and even opening the door when I got home made me wince and want to cry out (that would have scared the neighbors, eh?). Why joint pain? Why this misery?

I know what to do to fix this. I just seem to be lacking the willpower to do it. Perhaps this agony will be the butt kick I need? Let's hope so because I cannot tell.

Of course, it could just be option 1 and soreness from my workout and I'll never learn my lesson.

I'm going to lie here now and see what happens. If I am completely still ... Hell it hurts when I'm not moving too.

Goodnight world

Thursday, October 2, 2014

Yes, Reality, I see you.

For the last few months, I have been living in a fantasy world. 

My fantasy world isn't one of castles, dragons and pretty winged unicorns.  Nope, my fantasy world is a world in which I am perfectly healthy and a normal 34 year old woman.  That's my fantasy world.  It looks just like your regular world.  However, a giant needle has come along and shattered that fantasy world from my view.

I haven't felt good for over a month.  I brush it off as being tired (80 hour weeks?), I say I am fighting a cold or a flu, I feel alright the next morning and I charge ahead, and then by the end of the day I am feeling like hell all over again.  But, it can be explained by something else.  There's always another explanation other than the glaring potential reality. 

I have Wegener's Granulomatosis/Granulomatosis with Polyangiitis.  I'm a weggie.  I have cancer.  This is my truth.  I live with it everyday.  I ignore it, even when it is a gigantic elephant in the room.  I don't want to have it.  I hate it.  It's a dumb, stupid, piece of shit, disease that I don't want to have any part of ... so I ignore it. 

Could feeling sick for the last almost two months be because of my disease?  I don't know.  My doctor has been on maternity leave and will be until October 17th.  I've done my blood work but ... like usual, my CBC and crap are fine, and then my ANCA and CRP is elevated.  Same ol' Same ol'.  Of course, the ANCA and CRP are my disease indicators but ... they aren't where they were months ago.  So, it's fine, right? 

Nope.

The reality is that I have a very serious disease.  I know this.  I've talked about it myself.  I have explained it to people who don't get it and want to push me to do more ... for their benefit.  I want them to know the severity of my situation so that I am not taken advantage of.  But then, I take advantage of myself.  I don't listen to what I am saying to others because I feel like I am in control of what happens to me. 

I learned today that I am not.  No, nothing happened to me.  I'm still feeling absolutely horrific, exhausted, run down and broken but ... I charge on.  Nothing has changed with me.  But, reality has returned to my world. 

Phil died today. 

Phil was one of the first people to say hello to me in our Wegener's forum online.  Oh, that forum that I have leaned on so much when I had questions and weird aches/pains, etc.  That forum of wonderful people that spans the entire globe ... the only people in the world who actually know what I am feeling.  Phil was "Batman".  He was always offering insight, advice, arguments, etc.  Phil would check in with me on Facebook whenever I'd post a new worry in our forum.  Phil would explain that I needed to take what is wrong with me more seriously than I have been. 

I didn't listen to him either, guys.   Andy... he knows what I am dealing with!

And now ... he's gone.  He's been hospitalized since August.  Collapsed lungs, e coli, infection, etc.  Phil battled it all, with his love at his side, our Alysia.  She crossed the globe to be with him and ... was there with him when he crossed into another world.  Alysia kept us informed every day on Facebook, giving us updates and pictures of him in the hospital.  She had just said that he seemed to be doing better. 

So why isn't he here anymore?!

Phil's death has shaken me out of my fantasies.  Granted, he was much sicker than me in Wegener's terms.  He had a great amount of complications that he was dealing with from his Wegener's but he was in remission.  It doesn't make this any less scary for me. 

I have Wegener's too.  I'm lucky so far that I haven't been in as bad a shape as others.  But, I do have it.  It could do anything it wants to me. 

Will I remember this next week?  I don't know.  I ignore my disease all the time.  I need to remember it and take better care of myself.  I need to realize that I am not feeling well right now ... and that's a problem.  Something has been wrong for awhile and I don't want to face that. 

I'm shocked into a weird ... shaken ... uncomfortable reality.  Phil was a good man ... and now he's gone.  Alysia ... you're in my heart and prayers, milady. 

Friday, September 12, 2014

Good Things and Bad Things

"The way I see it, every life is a pile of good things and bad things.  The good things don't always soften the bad things, but vice versa, the bad things don't necessarily spoil the good things and make them unimportant" - The Doctor "Doctor Who"

As a die hard Whovian (Fan of Doctor Who) I could probably start every blog entry with some quote from the show that stuck with me.  But, I will go with this one, as it is one of my absolute, without a doubt, hands down favorite quote of all time, Doctor Who or otherwise.  The writers really hit the nail on the head in describing life.  It's this way for everyone.  It is standing out to me even more today as I try to sort through a kaleidoscope of changing thoughts and emotions in my head.

A wise man I respected and loved a great deal has moved on from this world to the next.  I know we are a world of many different beliefs but I believe without a doubt in my mind that he is in heaven, because men like him ... that's the only place they could possibly go.

This man, known to most as Gerald Kincaid, but to me, he was known as Grandpa.  Technically, if you want to be that way, he was my Grandfather-In-Law.  But, he was Grandpa.  Oh, how lucky I was to have been blessed to have him in my life.

On this day that he died, September 10th, 2014 he was 95 years old.  You would never guess it from talking with him or even being around him.  He was as lucid and whip smart as people I know who are decades younger.  He was smart, and intuitive and a man of incredible faith.  I can only imagine the sorts of things that he saw in ninety five years.  So much of the world changed in all that time and ... not so much for the better.  But you know what sticks out for me most? 

I believed he loved me. 

Given my fractured fairy tale of a life, happy yet pieced together in a strange way, I have often struggled with trusting people's feelings towards me.  It comes from a strange, disconnected relationship with the woman who gave birth to me, who didn't really love me the way she could have.  Yes, I know, "cry me a river", right?  Anyway, I've always been pessimistic in my thoughts.  It was easier to assume people didn't give a shit about me than to get attached and have my heart broken.

This wasn't the case with him.  From the moment I met him, he made me feel like I was part of the family.  He was always asking about me.  I'd be in the car with Dan when he'd call and he would always ask how I was because he had no idea I was right there with him.  When I would see him at his house he greeted me like it was the greatest part of that day. 


I loved to talk to him.  I loved to be around him.  I really and truly loved him.  I learned to cherish every visit that I had with him because ... I knew he was at an advanced age and since we didn't see them too terribly often, I knew each and every visit could be the last one.

I know that sounds awful.  But, I have lost 98% of my family.  One thinks that death is always lingering on the horizon when you've lost most of the people you can in your life already.  Anyway, I knew not to take one word he said for granted.

It doesn't take away from the fact that my heart shattered into about a million pieces yesterday when Dan called to say that he had collapsed and was rushed to the hospital, while paramedics actively performed CPR.  I knew.  I couldn't say the words, but I knew.  When Dan called back to say he was gone.  It wasn't news to me. 

I haven't really cried yet.  At least, before writing this.  I can feel my body reacting.  I find myself wanting to shove every thing I can find in my mouth, I'm short tempered and snappy, I'm easily ruffled and extremely sensitive.  It must be the tsunami of emotion being held behind the massive levy in my heart.  It will break, I can feel it.  If I wasn't sitting amongst people I'd probably be crying harder as I wrote this. 

As with most deaths, I found myself asking all those questions.  Why?  What happened?  What could have changed this outcome?  But, I know that no matter what happened.  This would have happened someday ... perhaps not yesterday or tomorrow, but we all have to say goodbye someday.  While driving to work, that Doctor Who quote came to mind and it was more fitting than anything.

Life is all good and bad, like it said.  We have happy moments and sad moments and elation and devastation.  It's part of the process.  It's why we have these things in our bodies called emotion.  We'd be robots if we didn't.  But, those good moments don't take away the bad ... and the bad certainly can't erase the good.  They work together, as strange as that sounds.  It's a push and pull, an ebb and flow.  The sun always rises, and then it always sets.  Even in the midst of the worst moments of our lives ... life continues to go on. 

My life is better because I had Gerald Kincaid in it.  I learned from him, and I was loved by him and by golly, I loved him back.  I will never hear a harmonica the same again.  I will never look at Walnut Creek on a map and not think of him.  I'll never be able to walk into that house where he was living and not look for him.  I wanted to call his cell phone so many times today so I could hear that voicemail that I fell for every.single.time.   I wanted it all to be a particularly bad dream, because the world couldn't have lost one of its purest souls. 

If I am lucky enough, he will be among my parents when I finally get to where I'm headed on the other side of that great big sky.  I look forward to being able to talk to him again someday.  Hopefully, not too soon because I'm not ready ... but someday.  We could all be so lucky.

What a great life he lived!  I won't see 95, are you kidding?  I'm not counting my eggs on 40 at this point.  My genetics suck.  But, such a life.  He inspired so many.  He was loved by everyone.  I wish I could be half the person he was. 

In the last few weeks, the world has lost it's laughter, it's sense of good fashion, and its strong faith.  Heaven is not only a funnier place, it's better dressed and Grandpa is teaching God a thing or two about the people back here.  Maybe he's showing him how to throw a better horseshoe game.  Or, teaching him the latest song on the harmonica. 

If there was ever a person to be met at the Pearly Gates by God himself, it's Gerald Kincaid, or as he will forever be known to me ...

Grandpa. 

I love you, sir.  You've change my life for the better and someday, I'll be able to thank you.  Rest well and know that we will never forget you back here on earth.

Sunday, September 7, 2014

The First Amendment

If you are familiar with the U.S. and familiar with our rules, you 'll know right away that sitting right here and blogging the way I am is me making good use of my First Amendment rights. 

Freedom of Speech, Freedom of Expression, blah blah blah.

Oh such lucky U.S. Citizens we are, right? Yes ......... and no. 

The ability to speak freely is wonderful.  Everyone should be allowed to express their opinion.  But, within that comes judgment and criticism and gossip and repercussions.  Quite honestly, not everyone wants to hear everything that people want/need to say.  Words can hurt as badly as knives or guns.  Words sometimes cut through the thickest of skin and there may not be a visible exterior wound but, inside ... someone is bleeding out.

As a writer/author/novelist/whatever, I am setting myself up to be exposed to the public's right to free speech.  I am allowing myself to be open to criticism (constructive or otherwise) and this is something I need to learn to swallow like a bitter pill at times.  People I don't know may absolutely HATE what I wrote.  Hell, people I DO know could hate it.  This is all part and partial of the writing gig.  Deal with it, right? 

Right.

That being said, writers are emotional people.  We are artists and artists are sensitive, regardless of what an actor/singer/writer might tell you.  The toughest package often has the softest core.  We pour our souls into whatever media we choose.  I write.  I write from places inside me that people don't often see because I wear a mask of perfect contentment and happiness.  OK, I think I do anyway.  It's cracking and some of the dark light is shining through.  Anyway, my heart and soul is bled onto a page and ... it's bound to hurt if someone says something negative.

Don't get me wrong! Criticize me, please.  I want the reviews, I want the word to spread.  I need that.  I need honest opinions.  I need constructive criticism so that I may do better the next time.  I want and need that more than I let on.  I want reviews on Amazon and Shelfari and Good Reads. This is how books gain notoriety, how things travel the globe.  I need all of that.  I'm expecting bad reviews, I am hoping for good ones.  Expect the worst, hope for the best.  It's how I've always lived.  My Dad used to tell me that all the time.  Bring it on, I say!  Bring it on!

Only ... I never expected such negativity so close to home.

That is where I am struggling.  There's no comment about pride for chasing my dreams, for putting myself out there.  No uplifting remarks about what a huge step it is, what a wonderful gift I have and I should keep using it and putting it out there.  Nope.  Let's go straight to what's wrong with it.  Let's see if I can tear you down faster than you were building up the confidence to keep going. 

That's what hurts.  I feel like there's not a lot of support underneath me anymore.  The wind has effectively gone out of my sails and I am sinking faster than a brick.   I am hoping that this is only temporary and spurned on by the fact that I am EXHAUSTED.  I hope that after a good nights sleep I will awake tomorrow renewed and thinking "screw you" to those extremely close to be naysayers.  Because until recently, those words wouldn't have knocked me down so easily.  My walls are not as strong at the moment, the plaster is cracking and the sheetrock a little crumbly.  I'll sleep tonight, waking tomorrow with the full intention of cutting all the bad foods out of my diet so that my disease might go back to sleep again (it's stirring a little, I feel him) and the weight will continue to drop, and my outlook on my future will once again be as bright as the sun. 

I'm grateful to live in a country where I can say what I want, I can speak how I feel, I can go anywhere and do anything ... and I expect people to be able to say whatever to me.  I just expected a little bit more support to go along with it from certain people.  I understand their need to offer some critique, but ... a little support to go along with it would go a very long way!

I apologize for my venting, I needed to get this off my chest so that I might be able to work on project # 4 today.  I had so many ideas yesterday afternoon before I was blasted onto my ass.

Have a wonderful day everyone. 

Monday, August 25, 2014

Damaged Superhero

Remember when I admitted that I wasn't a superhero?  It doesn't seem like that long ago but honestly, it was ages ago because I don't remember making myself believe that.  So, here I've been ... trying to fight drama and save the world one call at a time, one hour of overtime at a time.  Yes, I still seem to think that I am superwoman or Batgirl (hee hee I first typed Bathgirl) and keep pushing myself forward.  Onward and Upward!  Don't stop or you won't be able to get back up!

I have to learn to knock that crap off.

My superhero cape is ripped, my magical superhero powers are malfunctioning, and I think my super cool superhero unitard is stained.  Long story short?  I am a damaged superhero.  Or, I'm just not one and I need to quit the act and accept my fate. 

I'm still trying to be everything for everyone.  I didn't learn my lesson.  Will I ever?  Looking back at my life and knowing there is only one word people have ever used to describe me, stubborn, I am going to say ... No.  I don't think I'll ever learn. 

I'm still scared to death of ... death.  But, I'm scared of not having control.  So I keep pushing myself to the limit which could push me back into being really sick, which could push me close to that D-word.  And yet, I still don't learn my lesson.

I'll admit it.  I think I am mentally screwed up after typing that paragraph. 

Even superheroes have flaws, if you think about it.   Maybe that makes me a perfect candidate.  Oooh, maybe I'll get some crazy superpower of eternal life.  Oh wait ... I don't want that.  Can you imagine?  I'd have to be around forever and honestly, I don't think anyone ever really wants that.  It's not all that it seems. 

I'm getting sick.  Not sure if it's just going to be a run of the mill cold or flu or if it is something completely different related to the bastard disease that I will have forever known as Wegener's.   All I know is my ears are full of pressure, my throat feels thick, my chest is extremely tight, my body aches and feels incredibly fatigued.  Stay home you say?  Well ... if it's just a cold, I'm not calling in sick. 

When you get struck down with cancer and Wegener's ... you don't call in sick for colds.  You learn that sick time is precious and valuable and needs to be saved so that when your remission ends and you're sick again ... you have time on the books to pay the bills.   Colds, headaches, etc ... those all become ineligible reasons to use sick time. 

I'll wipe down and keep my germs to myself, so no one will worry about catching whatever I am getting.  I'm smart.  I cover my mouth when I cough, I use sanitizer.  But colds happen and if  I was sick every time I had one, there would be nothing left when something big happens. 

Maybe it's another part of my OCD.  The fear of not having enough sick time.   Whatever it is ... I think I'm finally admitting that I am a busted up broken superhero who is mentally fucked up. 

Saturday, August 23, 2014

Happiness is an inside job

My dear readers, how easy it would be for me to open this page up and dump out everything that's inside my head right now.  It would essentially be a complete and total word vomit because no good would come from it.  Oh sure, I'd be purging  my brain of all those bad thoughts, you say.  But, it wouldn't do me any good to vocalize them because ... to vocalize them is to give them life.  I have decided they don't deserve that power.

I made a decision towards the end of my shift yesterday that I was going to choose happiness.  I'm not sure what made me step back and look at the negative things from a wider perspective but I am glad that it did.  I decided that I needed to rise above it, pulling myself from the cesspool of drama, wiping off the stains it leaves behind and moving away from it completely.  I don't even want to stand near the shores of that cesspool.  Why?  Well, cesspools of drama have  a way of suddenly brewing a tidal wave that sucks you in!  If you're standing near the shores of one yourself ... RUN AWAY!!!!

For those of you that know the type of environment I work in, you'll know what I am talking about.   Now, it's not specific to the type of job that I do, that's not it at all.  It's an epidemic of any office environment.  Lots of people cooped up in a room, lots of drama, differing personalities, men women, children (yes, adult children) and ... drama.  Oh I mentioned that already?  Well, it gets a dual mention!  It's bound to happen.  People weren't meant to be trapped in a cage among other people.  It either makes you too in love or too in hate with each other. 

I work a lot.  Shocker, I know.  I keep saying that I won't and then I do.  I think it is a sign of my OCD.  I never would have said I have OCD but I am admitting now that I am.  I need some semblance of control.  It's only been worse since the tri-diagnosis of health conditions sent me spiraling a little.   I wasn't in control then, but I am now.  How?  Because I can work as much as I need to and assure myself the bills will be handled.  I can work when I need extra money.  I am in control.  It's also all I know at times.  Sometimes, the dramatic, uncomfortable, high stress environment that can be my employment is as comforting to me as a much loved blanket.  I sink in, knowing I am good at what I do, my people trust me and I am needed.  As I write this, I realize how unhealthy that sounds.  But, it's my OCD, OK?  I am working through it as you work through your own issues. 

I went off course there.  Anyway, I work a lot.  I work a lot in the aforementioned not always positive environment and it can be damaging to ones positivity.  Alas, I learned that it is only damaging if I let it.  That's right, folks!  I am in charge of how I feel.  I am the one who decides to dwell on something, be angry by it, or ... walk away.  I've decided it would be in the best interest of myself, my health, and others, if I just walk away.  No.  Not walk away from my job!  How on earth could you think of such a thing?  I mean, walk away from the drama.  I don't want any part of it.  It's unhealthy! It's a domino effect.  It trickles into everything I do.  It affects my time away from work and ... that is such a precious rare time that I don't want to let anything affect that.  SO ... it's time for that to stop.

I am here a lot.  It's better to be here a lot and happy than to be here a lot and angry.  It gives me tension headaches.  It gives me stress and I learned last year a very important lesson.  Stress is the candy of Cancer.  Oh yes, my friends, Cancer has a sweet tooth for stress.  It may not GIVE you cancer but it will sure feed on it if you let it.  Since I have it ... (remission but still) I need to make sure that I breathe, relax and stay on top of keeping Cancer in remission.  I won't allow it to have any candy or sugar, the same way that I will no longer be having candy or sugar.    I will remain positive, happy, calm, cool, and collected.  I will continue to smile, and not in the "I'm wearing a smiling mask" kind of way.  Nope.  I'll smile for real, because I will be happy for real. 

"Happiness is an inside job" You can be happy if you tell yourself to be happy.  If you just keep deciding to be happy, it will happen.  If you smile at people, you'll brighten their day so why not smile at yourself?  You can stay away from the drama if you make sure to tell yourself to stay out of it.  It's so easy to slip back in, the cesspool is warm and inviting.  It's like a bath or a hot tub, calling to you with how comfortable it is.  "Everyone is here, come on in!" It sings to you like a Siren, bringing you to your death.  Don't let it.  Turn around and run, run far far away from that cesspool.   Come back to the other side where the light is. 

I'm over here to keep you company.  It might not seem like the "cool" place to be at first, but think of the long term effects of being in the light.  Less stress and discomfort, better sleep, a better image of yourself and ... you'll see so many other things that you didn't notice while wallowing in the dirty, dank, darkside. 

I choose happiness.  What do you choose?

Thursday, August 14, 2014

Stick a fork in me, I'm done

My brain feels like a sponge that's been wrung out of all the good, fun, stuff.  Now, my brain sits up in the shell that is my skull a wrung out, crusted, limp piece of gray, squiggly mush.  Or like, a busted up robot, crumpled on the ground and there is the occasional zap of power still trying to keep it running but ... it's hopeless.   Have I painted that picture enough for you yet?

There are a million contributors to this madness.  First and foremost, myself.  I overdid it for myself.  I pushed myself too much as I always do.  But, I had a revelation this morning upon getting dressed.  I've made myself OCD.  Not like, 100% OCD but ... like 50%?  Is it possible to be just a little OCD?  I think so.  I think it's a job requirement.  We should put it on our list of required skills for this job.  "Must be a little bit obsessive compulsive to ride the ride".  I find that I hate when my boxes touch on the screen at work, or I hate papers that are haphazardly stacked.  Nope.  They have to be stacked neatly.  I can't have papers on the counter at home.  I go through them, sort them, and move them to the table where I have a filing system ready to go.  I can't handle my car being a mess.  It may take a day or two but suddenly I am freaking out and need to clean the car.  And ... I have to work as much as I can so that I know when payday comes ... the money will cover the bills.  It's what I do.  I feel like I HAVE to work.  So I push and push and push and push until I can't go anymore.

Healthy?  Not so much. 

Balls are in motion to ease that for me and ... that will be one less OCD part of my crazy life.  The rest will still be there, trust me.  I know this because today I was having a major OCD freak out while driving my husband's truck to work.  He's in construction so ... you can do the careful deductions to figure out why I was going nuts, right?  No?  Let me fill you in. 

Stuff ... Everywhere.

Electrical tape, a couple hand tools, receipts for the job site, receipts for home, a box of misc. parts, some weird orange plastic things that had a cotton ball-y thing on them, and ... of course ... a shit ton of dirt! My eye is twitching just thinking about it.   But, that is his domain.  It's hit mess.  But that was just another jab in my side, indicating that I am more OCD than I thought.

Money stress, training stress, work stress, sadness over feeling like I lost someone from my life even when I didn't even know them, feeling like the world is a little less happy now. Worrying about  my Nana, worrying about things I have zero to no control over. 

I worry about my health.  (apparently not enough to work less but still ...) I have felt some things (am still feeling some things) that scare me.  I've tried to talk with the docs but ... I got fed up that some scary symptoms were a "headache" so I didn't go to them with this.  What are they going to say?  My heart has a "headache" too?  If it keeps up I may go see them tomorrow.  I was supposed to go to  my doctor tomorrow anyway but I cancelled that appointment after my anger that the "headache" word again.

I feel like I am overwhelmed.  I feel like I am on a hamster wheel.  It spins and spins and spins but I am really not getting anywhere. 

I'm taking a little break from working on the next book project.  I have three active books.  I need to really focus for the next one.  The next one is the start of what I hope will be a series.  It requires a little more preparation and homework.  But, this is what I love so be it.

I just feel like I am up against a wall right now.  The wall will move eventually ... I just have to push a little bit harder.  And you all know me, if there is one thing I do ... I push myself. 

Tuesday, August 12, 2014

Thanks for the Memories

To quote from Whitman, "O me! O life!... of the questions of these recurring; of the endless trains of the faithless... of cities filled with the foolish; what good amid these, O me, O life?" Answer. That you are here - that life exists, and identity; that the powerful play goes on and you may contribute a verse. That the powerful play *goes on* and you may contribute a verse. What will your verse be?
- JOHN KEATING, AS PLAYED BY THE LATE, GREAT, ROBIN WILLIAMS


Oh how it absolutely pains me to write those words!!! Late Robin Williams?  How on earth could that be?  Such a tremendously talented man.  A tortured soul, yes, most comedians are.  It's where the comedy comes from.  Did you know that?  I actually did.  Yes, I knew he battled demons.  But, like the rest of the world, I wasn't aware of just how bad that fight was. I wish I wasn't referring to him in the past tense.  This world is not ready to be without him.  We aren't. 

Laughter is the best medicine.  Truer words have never been spoken.  How many times in my own dark days did I laugh at a joke and feel a little better?  Do you know who my favorite comedian was?  It shouldn't be hard to figure out.  Robin Williams.  Did he know that?  Well, no.  I'm just a girl who happens to live in the same county he spent a lot of his time in.  He had a BEAUTIFUL house up on the hill in Sonoma County.  My husband did electrical work for him years ago.  He was blessed with the chance to meet him.  He's a lucky som'bitch.  I'll tell him that too.  I've wanted to meet Robin Williams since I was a little girl.   I loved Mork from Ork.  He was funny and silly and carefree.  Robin Williams was a huge inspiration in my very own life.

How can he not be here anymore? 

The moon is a little darker, the stars not shining as brightly as before.  Our world is different because there is a powerful force to be reckoned with that has given up the fight and left us.  We are left here on earth to wonder if there was anything we could have done.  We are left to wonder if the light will ever be as bright as it was when Robin Williams was here. 

His smile was infectious.  The laugh ... oh how it made me laugh.  He was a voice actor, a character actor, a dramatic actor.  He was everything and anything.  He was amazingly gifted.  How can that man, who cracked jokes at a thousand miles an hour and seemed to bounce off the chair with his energy ... just disappear?  Or that man, who you thought couldn't be serious, even for a minute, suddenly was on screen before you playing a conflicted and tortured psychiatrist.  There was rarely a smile in that movie.  A man so subdued I was shocked it was him at first.  That is the mark of a true talent.  An incredible talent.  There isn't anyone else out there like him.

The social media world is abuzz with remembrances, condolences, and pain.  There's not a soul on this earth that he didn't reach in some way.  A supporter of the troops, an SF Giants fan who was at games rather often, a family man, a local Sonoma/Marin county resident, A comedian, an actor, a giver, an inspiration, a husband, a father, a friend ... His movies traversed genres. It wasn't like he was just a comedian, or comedic actor.  Nope.  There were a few dramas sprinkled in to show just how goddamned brilliant he was. 

This awful, heartbreaking, news sheds light on a serious issue as well.  Depression and Suicide.  It's a real thing, people.  It doesn't matter how famous you are, how talented and accomplished you may be in your life.  There are some mountains we can't see over.   It takes tremendous strength to even try to climb over them and at times, the journey can be too much.  Just when it feels like the peak is close, you fall back down the mountain to start over.  No one can understand what you are feeling because it is YOU that is experiencing it. 

Tom Hardy's quote comes to mind ... "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." 

Everyone has a personal Mt. Everest.  It doesn't matter the issue because it is your issue.  What is important to you, is important to you.  You're the one who has to overcome it.  No one has the right to downplay anything in your life. 

Obviously, there was something awful in Robin Williams' world that he couldn't climb over.  No one has any right to say anything about it.  It was his battle, and he decided to end it. 

The pain I am feeling over this is shaking me to the core.  Growing up, whenever someone would ask "If you could have dinner with anyone, alive or dead, who would you choose?"  I always chose Robin Williams.  He seemed like a fun, effervescent spirit who seemed to obtain great joy from making people laugh.   He was a giving person, a kind person who gave his time to more than his career.   But now, there's no chance of meeting him, of soaking up that joy by just being around him. 

As a Sonoma County resident, it feels like our most famous citizen is gone.  A star that lit my childhood and movie/television experience has gone out forever. 

He wasn't just an actor to me.  This isn't just some famous person who died and it's sad and life goes on.  This one hurts and it hurts bad and my heart goes out to his wife, and his children, and his family.  I cannot even imagine what they are feeling if I am devastated to hear of the man's passing and I never truly got to know him in person. 

"Real loss is only possible when you love something more than you love yourself." - Sean, as played by the late Robin Williams

Be at peace now, Mr. Williams.  Fly free in the heavens and smile.  Your legacy will live on forever back here on earth.  You smile will shine from television screens, your laugh will dance like music in the ears of the people who loved you.  We loved you.  Perhaps that wasn't what you needed or even really knew.  But, we loved you and will miss your spirit back here with the earthlings.  Fly back to Ork, Mork.  Rainbow suspenders will never be seen the same again.  A red clown nose , giant clown shoes and a new meaning for the term Gesundheit will bring your face back to our minds.   "It was a run by fruiting"  "heloooooooooooo", dancing with a vacuum cleaner and sticking our faces in pie.  Run your fingers through the painted colors of heaven, because we don't believe for a minute that you are in that dark place.    Peter Pan will live forever in our hearts as you will, sir. 

** But oh, to be free. Not to have to go "Poof! What do you need, "Poof! What do you need, Poof! What do you need?". To be my own master. Such a thing would be greater than all the magic and all the treasures in all the world. **

Well, Genie ... You're free. 

Rest in Peace, Robin William.  Na-nu Na-nu

Sunday, August 3, 2014

Twenty Four Hours

What a difference 24 hours makes.  It's a whole day.  In that one day, I have a completely different outlook.  Why?  Well ... a friend of mine found an article about an author who put her books on Amazon for free, and makes money doing that.  Well ... if she can do that, SO CAN I!
So I looked into it, and uploaded, tweaked and designed and now my first finished book, "Mirror, Mirror", is sitting available in the Kindle Bookstore for $2.99.  I have also been messing around on CreateSpace and am in the process of making the paperback version also available on Amazon for $9.99.  I'll only make about $2 on each book but ... do you know what that means?!

I'm an author, baby.  A published author who is actually able to make something called money with the words I am writing. 

Is this the ultimate dream come true?  Sort of.  The ultimate dream would be to achieve some sort of Stephen King-Danielle Steele type fame where the mere mention of my name and people know who I am but ... that's rare and ... I'll take just having my work out there, in print, on e-readers ... everywhere!!! I'll take it.  It's like ... almost the full and total dream. 

I want to be over the moon excited but I am somewhere that I have to remain calm, keep it to myself and not dance around the room excited.  But, I am excited.  This is like HUGE!! 

Who knows what will happen?  The what-if is kind of a nice feeling.  Nothing could happen and then again, a lot of things could happen.  I could make a little extra money to pay bills off which would, ultimately, give me more free time to write from home.  It is the bills that keep me here day in and day out and night and day and day in and day out again.  If I could make enough to free up some of my time .....

Well that would make me feel downright successful there!!!

Chase those dreams, kids.  Just go out and chase them. 

Saturday, August 2, 2014

To quit or not to quit

Rejection is all part and partial of the journey to becoming a published author, is it not?  So far I have received dozens of letters politely declining my work and while it sucks, I take them, save them in a folder and move on.  Then, someone loved my synopsis and wanted to see 100 pages.  I eagerly sent it over ... feeling unbelievably hopeful about all of this for the first time.

Until now.

I just received word that my writing didn't live up to her expectations from my query letter and the synopsis.  I had a wonderful idea but my writing wasn't as dramatic enough.  I can't even defend it because I am my own worst critic!!   Do I pull up that file and go back through it with a fine toothed comb, changing things and revamping it into something better?  I don't know. 

Honestly, I feel like hanging up my imagination forever.  This one completely took the wind out of my sails and fogged up the dreams I was having.   Perhaps, I'm not good enough for this.  I'm not capable of writing well enough to have an agent represent me and shop me out to all the large publishing houses.  I'm just a girl from Santa Rosa who writes obsessively ... but isn't good at it. 

Oh poor me, right?  But, how can I just pick myself back up and move forward from this?  It's like ... the one solid good hope that I had and now it's been squashed to bits.   Smashed into smithereens!! Not a trace of shining hope left to hold onto.  It's awful.  I feel worthless ... like I shouldn't even continue this charade. 

I had planned on spending some time this weekend working on the first book of the series I had planned but now I don't even want to open a word file.  I want to go through the computer and delete every single idea that I have in there.  It's the equivalent of wanting to smash anything in my reach.  Temper tantrum?  Yea, maybe.  I want this more than anything in the world and it is starting to seem more and more like an impossible feat.

Maybe the feelings are residual from yesterday ... I miss my Dad something fierce and feel like I am not living up to my potential and he can see that.  I feared I was getting sick again but so far I have perfect blood work (still waitin' on the inflammation blood work and the autoimmune levels).  It is my food that is doing this to me, it has to be.  I'll feel better once I have that under control for a few days.  It's how it works.  At least I am not getting worse.  I hope to keep continuing on a path to getting better.

Man, I am so freaking depressed now.  Like ... I feel I am a complete and total failure.  I spent so much time talking about being a writer.  I've carried this dream in my heart for many years and now, it's gone with the wind.   I don't even have the heart or the energy to go on with this anymore.    This is why I am pessimistic!!! It saves me from this let-down ... this ... rejection.  No one likes rejection!!! UGH. 

I'm embarrassed that I have told anyone about my writing.  I'm embarrassed to have called myself a writer.  I am ... ashamed.    I should have kept it to myself because it would have saved me from having to answer the question that she hated it, that I suck, that I shouldn't ever be a writer.  I should just stick to my blogs and keep my writing to myself. 

I need a pick me up.  I feel like a complete and total loser.  A sick loser that feels like crap. 

Whatever. 

Friday, August 1, 2014

August 1st ... I hate you.

Fourteen years ago, today became a day I will hate for the rest of my entire life.  It had been a day everyone in my family had been trying to prepare for, but who really can prepare for a death?  There is no way to prepare.  Trust me, I tried to gear myself up for it and I still feel to a billion pieces.

My Dad died on this date, fourteen years ago.  For how I feel, you'd think he died an hour ago.  It is a wound that refuses to heal and I am in no major hurry to make it heal.  He was my best friend, my knight in shining armor, a little girl's first love.  I was my dad's pride and joy, his princess, his little girl.  It's no wonder I am not doing well with it, right? 

Last year, on 7/31/13, I was given the final diagnosis of Wegener's.  It had been something that kept being mentioned and then finally I had the specialist on board as well.  So last August 1st I was still sort of reeling from the news that I didn't quite notice the day. 

There's no avoiding it today.  It's been bothering me all week.  The emotions that have been running rampant in my body are out of control.  It's resulted in me eating crappy, making bad choices, not sleeping enough and just feeling GROSS.  But, I noticed some things happening that I didn't really pay much attention to.  I figured my bad eating was making things act up.

My doctor disagrees and has ordered me over to the lab for blood work. 

Well, that kind of statement is enough to make someone worry a little.  Granted, I do my blood work every two months and it's due two weeks from now but she says I should go do them now so I can see what my levels are.  It's been my experience that my blood work doesn't properly depict how I am feeling and I am left feeling frustrated.   Hopefully, this won't be the case.

No, I don't want something BAD to show up, I just want something to show up that explains all this.  Is it because of how I was eating?  Is my dumb disease waking up again?  I've been working far too much and that doesn't help things stay on track. 

This just isn't a good day for me.  I'm sure the blood work will be fine and I won't have to worry about that but ... the day still sucks.  I want my Dad to be here every second of the day.  Not being able to bounce these things off him kills me all the time. 

I did my labs.  Now I sit and wait. 

I miss my Dad and I want it to be August 2nd already. 

Saturday, July 5, 2014

A wicked mind is a terrible thing to waste

I feel like my mind is being wasted.  Perhaps, I placed too much of a strain on it.   The pressure to get things done, perfected and sent out to be criticized may have proven to be too much because I can't seem to write anything now to save my life.   I had a blazing day of 10,000 words but ... since then my imagination is a dried up well.

That's not to say I don't imagine things.  Nope.  I do. I've been spending the last few days drifting away in a fantasy world.  I can see things vivid and clear as if they are actual memories there.  But, for some reason, the process of getting those thoughts converted into words and then putting them on paper hasn't been working.    That doesn't bode well for me.

People have asked me on countless occasions in the last few days how I have retained my sanity while working eighty hours a week the past couple weeks.  Well, my usual go-to answer is that I write.  I write while I am here in between calls and when I don't have a trainee.  I face my computer, I let part of my brain slip from this world and into the world I am creating.  Seems that portal is closed and I can't get my brain to be there!

I've even started other writing ideas to see if they would take off or spark something.  Nope.  I took an idea that sounded SO strong in my head and tried to write it over the last few days.  I have barely one page. 

Will this writers' block ever lift?  I sure as heck hope so. 

All that writing nonsense aside, I'm doing OK otherwise for those that read this for an update in the ongoing saga of whether or not I will fall back into the death grip of cancer and Wegener's.    So far, so good.   Those little M proteins that indicate my blood cancer have behaved as far as I know.  My heart always leaps into my throat whenever Dr. Zhang's office calls but ... the message has been good thus far.  Cancer remission is at 1 year 3 months and counting.

Wegener's?  Well, he's an asshole.  I think I knocked him unconscious for the time being but ... some things are starting to happen that make me think that he could be coming awake again.  This, more than the cancer, scares me.   Having a relatively unknown disease that could kill you isn't exactly something that can just brushed off and forgotten.   For the most part, when things would happen I knew they weren't related and I kept moving.

Now? I'm not so sure.  I'll spare you the details but ... if it IS Wegener's ... I am a little more scared than before.  I just did my lab work and while my PR-3 levels were still elevated they were better than they had been ever before.  I thought that was a promising sign.  While the PR-3 test isn't exactly an indicator of disease activity ... it's something I would really like to see back to normal.  Like ... actual normal and not just the low end of being high.   I go do them again in August.  We'll see what they say then. 

No.  I'm not waiting until then to see the doctor.  I emailed both my rheumatologist and my general doctor to ask them about a weird pain in my leg the other night that almost had my ass hauled to the ER for the bazillionth time in the last two and a half years.  But, it passed and I was certain it was not the scary bad blood clot that people were making it out to be.  

Needless to say, looking over this entry, I'm not the happy-go-lucky person I have been in the last few entries.   A person can't be in a good mood EVERY day, right?  I'm worried about my health a teensy bit and I am frustrated that I can't write.  At least, I can't write in my normal format.  I seem to have no problem word vomiting all over a blog page. 

This too shall pass, I say.  This too shall pass.