Wednesday, November 11, 2015

Just out of my reach

I have always known what I wanted to be when I grew up.  There were a few different main jobs I was planning on having but I always planned on doing one of them on the side or even full time.  It depended on the day. Well ... I'm all grown up and I am not it.  But, it's not too late to be it.  Yes?  No? 

Ever since I learned how to write, I wrote stories.  I love to read and think that people who publish books are giving me some of the greatest gifts in the world.  I love to slip away to other worlds and escape the mundane reality of my own life.  I also like to write things of my own, hoping to some day give that to some other reader. 

I want to be a writer. 

You could say I am.  I write every day.  I have completed three books that I self published on Amazon and just finished the second re-write of my fourth that is going to hopefully be picked up by a literary agent and published the ol' fashioned way.    However, I am not doing that for a living right now.  I am not a writer who has an agency and a publishing house churning out my work.  I do have an editor to whom I am eternally grateful but  ... that's where it ends.  I'm a full time dispatcher who is desperately trying to live her dreams of being a novelist simultaneously. 

It's both invigorating and depressing at the same time.  My full time job is one that I enjoy immensely and it allows me to cultivate that dream but ... it's not what I dreamed of doing as a child.  It's not what I ultimately see myself doing.  But, until then, I need the bills paid.

Be a starving artist! Who me?  NO.  I don't necessarily want to be a homeless artist but that is where I would be headed if I gave up the full time job for a shot at my name becoming a household name as a novelist.   Or even better ... an Academy Award winning screenwriter. 

I close my eyes and see myself working with someone to adapt my books into movies.  I see myself helping with casting, with location scouting.  I can see all of this as if it was actually going to happen.  But then, the realist in my head reminds me that I can also write entire stories about people and see those things vividly in my mind as well so all these dreams must just be another figment of my tremendous imagination.

Will I ever be able to make money with my writing?  Will an agent out there take me under their wing and guide me to a point of finding my books at Costco, Barnes and Noble and on Amazon (not as self published titles)?  Will they put me on the path to flying around the country and even the world on a book tour, signing copies of my books for my devoted fans?

A girl can really dream, can't she?

I want this so badly I can taste it.  I squash the desire down, reminding myself that I don't have a degree in English, my books aren't that good, I'm just a girl from Santa Rosa and I should be more realistic about where my future is headed.  But then, I start working on a book and that fire explodes and spreads through me like wild fire. 

I want this. 

Why can't I have it?  When is it going to be my turn?

Thursday, October 15, 2015

Leap of Faith

1.  If you do not go after what you want, you will never have it. 
2. If you do not ask, the answer will always be no.
3.  If you do not step forward, you will always be in the same place.

Oh such words to live by ... so, I should start, right? 

I'm trying.  In fact, I am about to go head to head with the biggest, most paralyzing fear of my life.  I am going to get on a plane on Sunday morning.  I have been scared of getting on a plane since I can remember.  I know it started when I was a kid.    We didn't fly anywhere and it just seemed like this huge daunting thing.  Little by little, that tiny seed of fear grew and grew until it's now this HUGE GINORMOUS elephant that sort of hangs out in my brain and keeps me from doing anything.   The fear took it's final sprout of roots on September 11th, 2001.  Oh yea ... when I learned planes could not only crash because of mechanical reasons but because douchebags could decide to take over and crash them into things.  New reasons to fear what I was already petrified of ... grrrrrrrrrrrrreat. 

So now, I am 35 years old and have never gone anywhere except by car.  Yes, everyone has pointed out that this is a far more dangerous mode of transportation than a commercial airliner.  But ... I feel in control.  My hands on the wheel, my brain taking stock of the ways I can save myself if something happens.  Perhaps, this comes from a place where I have intense control issues and don't know it?  Or, that other irrational fear I have of dying. 

We can't control that though, right?  Right.  We can't.  A person cannot fully live their life being in fear of dying because everyone dies sometime.  Not one of us is going to live forever just because we avoided anything that could put us in a position of dying.  I need to start living my life and expanding my world beyond things that can be accessed by highways.

Which is funny, because I can say that, and acknowledge that I want to do that ... but then, I don't want to get on a plane. I'm terrified of the plane.  I am terrified of everything about it.  But, at the same time, I want to go on the trip, I want to get over this fear.  I want to tackle it head on and be like  . . . "YEA!  GO ME!" 

It's like there is this thing ... and if I do this, I can do anything. I can go anywhere in the world and see all those places I want to.  The UK awaits me with its castles and history and accents and that gorgeous Union Jack flag waving high in the sky over the Tower Bridge.  The Tower of London and it's ghosts, Buckingham Palace, having tea and ... AHHH Or Ireland ... Scotland ... that island that could fit in the state of Texas is over there, just waiting for me.  But ... to get there, I would need to be able to strap myself into a metal tube and launch myself thousands of feet into the air, placing my life in the hands of a pilot and waiting 12+ hours to be in the place I covet so.   If I don't do that ... I'll never see England.  It's not like I can spend a week driving cross country, a week on a ship and then a week in England and then have two weeks to get back.  Who has that kind of time?!  And money?!  Certainly not me.

So, if I get through this next week, I am free to see anything in the world.  Assuming I can come up with the money of course.  It would only be money standing in my way.  Money can be saved. 

It's so easy for me to write this. It's so easy to tell myself I need to do this.  The logical side of my brain is like "Come on, just get on the plane, think of what awaits you on the other side of that fear" and then I get all jazzed and start planning all these great vacations I want to do.  I'm all good to go until that frightened voice starts screaming about not wanting to do it. 

"A journey of a thousand miles begins with a single step"

Where I want to go is thousands of miles away.  I need to take a step, right?

So what if that step happens to be a ginormous leap of faith?  That step is me staring in the face of a fear that is bigger than anything else in my life and making it back down.  That's not an easy feat and not something I'm terribly well known for doing.  It's like ... the only major fear that I have.  Flying.  I also fear getting in a gnarly car accident but ...does anyone really look forward to that?

After this, will I feel different?  Will I feel like can face anything?  Will there be this huge weight lifted?  Or, will I hate absolutely every minute of it and never want to do it again?  Because, there is always that option.  Which, I really and truly hope doesn't happen because that would just suck.  Then again, I know people who despise flying and they still do it.  That should say something to me, right?

That tiny petrified voice can scream all she wants ... I am doing this.  I'm doing this and nothing is going to stop me so it isn't like it makes any difference.  I am acknowledging the fear, I am telling it that I know it's there but ... that I am going to conquer it.  I am going to grow as a person.  I am going to defeat it. 

I can do this.  I can do this.  I can do this. 

London, I'm coming for you. 

Wednesday, September 30, 2015

But wait ... there's more!

When I cite the things that are wrong with me, I cringe.  It's a hefty list! No wonder I often look out at the world with a sort of blank apathy.  There is worse that could be happening ... that is true in probably every situation.  But, when you're standing at the foot of the mountain, it gets hard to be able to grasp that and put the smile back in its rightful place.

My doc and I are investigating the potential OTHER problems I might be having.  I have found myself spiraling down the rabbit hole, hands flailing around for something to grab onto so that I don't plummet all the way to the cold hard ground some distance below.   The depression is ramping itself up because I am not having any relief from a lot of these symptoms.  I am in tremendous amounts of pain and an 800mg Ibuprofen doesn't alleviate it at all.  There's not even a tiny twinge of relief.  I can't sleep because I can't get comfortable, the pain wakes me up.  I can't concentrate, I can't think.  I can't do the things I enjoy.  I can't move around much so I am not exercising and gaining weight because I took prednisone.  All of this is compounding and making me feel pretty desperate.  I feel like I am constantly on the verge of bursting into tears.  A couple times, I actually have. 

So, I turned to the good doctor begging for something ... anything ... to make it better.  She had mentioned another additional diagnosis a few months back and when I decided to research what she'd said, I was shocked to find that I matched up with all the symptoms on the short list and pretty much all of the symptoms on the long extended list.  What is this mystery disease?


Oh lovely. 

To me, this is a disease that has so much stigma behind it.   People either accept what you say and do what they can to help or they launch into some diatribe about it being all in your head, diet affected, etc. 

Let me break it down to you this way.  Diet affects everything we do.  Every condition can benefit from a clean eating regimen.  Every. One.  Of. Us.  So, honestly, if I hear someone start to lecture me on that if I am diagnosed I am all ready to launch back. 

I'm just so tired of being told by everyone how to fix me.  Thanks, I appreciate that you have the miracle cure.  I just want someone to support me, is that asking a ton?  Just be there for me, just let me have a moment, just let me cry.  I've soldiered on with his, hiding most of my tears and frustrations.  Yes, I've vented here and people have heard me vent but I try to keep it away from the world because ... no one gives a shit. 

The truth hurts but it's true. 

All I can say is ... I'm actually hoping its true. Then, there's something that can be done.  Reading the doctor's reply to my plea for heavier pain meds because I can't sleep at night destroyed me.  I can't take heavy narcotics if I do have Fibromyalgia and ... she wants to wait to figure that out and ... I would then have to talk to my general doctor.

That doesn't make the pain stop now. 

I feel the tears coming again.  I hurt so bad from head to toe.  My sinuses are throbbing, my rib cage feels like I have three knives poking into them on my back, I can feel every bone and joint in my body.  My head feels like it is in a fog, like a storm cloud of its own.  I can't ever get comfortable in any chair or bed, etc.  I can't stand, I can't do anything to feel any sort of peace ... any relief. 

You can imagine why I would feel like I am going to cry.  I just want to feel NORMAL.  I just don't want to hurt!!!!!  I would gladly feel run down and tired right now.  I would gladly take that part and give away this massive pain that is the only thing I can think of right now.  It's the only thing that ever crosses my mind. 

I am hitting the end of my rope.  I really am. 

Wednesday, September 23, 2015

Sometimes, I wonder ... why bother?

Warning: The following isn't going to be a very happy post.  If you're not interested in the woes that bounce around in my head ... leave now. 

Have I mentioned lately that I hate my life?  That's a generic statement.  I don't exactly hate everything of my life.  I love my husband, our animals, my hodge podge family, I love my house even though it's sucking the money out of my bank account and stressing me out.  From a distance, I have it pretty darn good, don't I?   

Let's lift the lid off the snowglobe of my life and peek inside.

I am miserable.  I feel awful.  I've been sick for a few weeks now and it's really bothering me.   I had bronchitis and that was one thing.  I'll take that back in a heart beat in exchange for what I am feeling right now. 

In short, it feels like my brain is dying.  I'm dizzy.  The world spins around me for no explained reason.  I try to feel it out and there are some obvious triggers.  I look down at my phone and scroll through things, I am looking at stuff on the internet, turn my head too fast, turn a corner.  Those are clear vertiginous triggers.  However, I could be sitting here looking out the window and suddenly the room is whirling out of control and I feel like I am going to collapse.    I can't concentrate.  I struggle to find words, I forget what I am doing.  I feel confused a lot. 
Right now, it feels like I took some heavy medications and am about to drop off into hours of unconsciousness.  Except, I haven't.  I feel like the whole front of my brain can't comprehend anything ... and I feel like I am sort of not all here. 
My heart feels like it is struggling to pump sometimes in my chest or that it's going too fast.   I have strange headaches that cause dizziness and nauseous on top of the regular dizziness.   And then, there's the weird, and painful, pain and pressure behind my left eye that flails out of control when I tilt my head forward. 

I am in a very unhappy place when it comes to my health.   I feel like I am left to just sort of 'deal with this' on my own.  Everyone has great advice: Call the doctor, go to the ER.  Yay, great ideas, right?


I look too healthy.  I am one of those "You don't LOOK sick" people.  So I must be faking the whole bloody thing, right?   I'm not super thin, I have no outward signs of anything.  I must just be someone who is manifesting this whole thing for my  own misery.

Don't make me laugh. 

I had several moments where I should have been in the ER.  Did I go?  No.  Because the triage nurses always treat me like garbage.  And then, I sit in there and have an EKG which is normal ... then I have normal blood work (because they only test for the basics in the ER), and no one ... and I do mean NO ONE ... knows anything about the disease that I have.  They look at me like it's something I pulled out of freaking thin air. 

Yes, Dr. Know-It-All, I made this up.  I feel like being in complete misery and having your staff treat me like I am a pill popper trying to score some free meds.  I like this life, please ... treat me like crap some more.  It's not like I am not already upset enough.  Let's make it worse!!!

Why do I even bother to try and fix anything?  WHy do I take my medications on schedule?  I should just stop taking them and let things do what they will.  The way I am living now I am expected to just be completely miserable 100% of the time.  At least I'm alive, right?   Perhaps if I was rolled into my doctor's office half dead, they'd go: "Oh, we should have treated this before it got thisbad"

You think?

It doesn't do me any good to even vent here.  It's not like it is going to change anything.  There are people going through far worse than me.  I should just close my mouth, not say a word, smile and tell everyone I am fantastic and pretend there is no strange disease taking up residence inside my body. 

I'm perfectly health, thank you.  How are you?

Thursday, September 3, 2015

Don't look down.

I've walked to the edge of the cliff.  My toes peek just a little over the edge.  When I stepped here, several tiny pebbles shot off into the abyss.  Where did they fall?  I don't know because I don't want to look down.  If I don't look down, I don't know that I am standing at a great precipice.  If I keep my eyes forward, perhaps I can envision the road stretching out in front of me.  A road I can continue to walk, one foot in front of the other, and repeat. 

Here I go again with the doom and gloom analogies.  It seems that is where my mind heads all the time these days.  Bad, more bad, even worse bad.  Occasionally, there's a spark of greatness.  A burst of bright sunshine that breaks through the darkness and I am all full of positivity.  I have to learn to grab ahold and bottle that shit so that when things shift back to where I am now, I can open the bottle and let the sun fall all over me like the rain. 

On a tangent, I love the rain ... so it's strange that I would use sunshine as my happiness.  BUt, whatever, you know what I mean.

Why am I currently sinking into this latest cloud of doom and gloom?  Oh ... a variety of reasons, most of which center around this dumbass disease.   With a recent flare up of symptoms, I find myself staring down the barrel of that gun again.  As with my earlier flare ups, I am not in any way shape or form in any life threatening danger at this point, but it brings the gun back into view when I've worked really hard to not to notice its presence.  My body is reminding me daily that it is there.  Joint pain, sinus pain, ear pain ... did I mention there's pain?  If I didn't ... there is.  Every. Day.  Take, for instance, the nose.  We all have them.  We know they are there without even feeling it.  It's just there.  Benign ... BLAH.  However, at the moment, I am acutely aware of my nose.  I feel every teeny speck of it and it doesn't feel good.  I also know exactly where my sinus cavities are in my face.  I can feel the pressure pushing on the back of my eyes.  I feel like my forehead is inflated, as if there is a swollen balloon on the front of my face.  And that is JUST what's going on in my sinuses.  That alone is enough to drive me bonkers. 

My body feels as if it is the body of a ninety seven year old.  I creak, I throb, I stiffen up when I stop moving.  Not muscle ache.  It feels deep joint.  I know where each bone meets up with its partner.  I could sing you that song ... "The knee bones connected to the thigh bone ..." It's deep, and it throbs, and it makes me insane.  I fully understand why people fatally hurt themselves to stop the pain. 

NO!  I am not going to hurt myself.  It's just an acknowledgement of why people do that.  I get it.  Make it stop.  There is nothing more upsetting than taking 800mg of Ibuprofen which, mind you, I don't take ALL the time, and NOTHING HAPPENS.  Not a tiny fragment of pain dissipates.  There is no relief.  None.  I could almost understand if the painkiller rid me of the sinus pain ... or the joint pain but not both?  Instead, it's like I made myself swallow a MASSIVE horse pill for nothing. 

So, I drug myself to the doctor to beg her for some sort of relief.  She was as awesome as she always is and we came up with a plan.  I am on a smaller taper dose of prednisone which was my choice first.  I know I have to take it to get the symptoms to stop.  I know it doesn't cure me but it should make me not be as miserable and keep the inflammation from grabbing those oh-so-important organs that keep me alive and shaking them like a police K-9 with a bad guy.   SO, there's the prednisone.  I am back on my anti-rejection immunosuppressant medications, a bigger dose than I was on before.

Good plan, right?

Yes ... and no.  Yes, I am ready to feel better and will do just about anything at this point.  No.  It's Prednisone.  Even when being extra careful about what goes into my mouth there's weight gain to be had and for someone like me, who is already trying (and sometimes not trying, let's be honest here) to lose weight so that I am not this horrifically disgusting troll of a human that I am, it's just not a good thing and it makes me depressed even more than I already was.  So there's that.  And then there's the anti-rejection meds.  Yay immunosuppressors that go in and stop my dumbass immune system from going after the parts of me that are supposed to be in my body.  Good on you then!  Do your thing.

Until, I sit down and re-read the literature on said medications.  This is good to do with all your strange medications.  As with most, there's the standard side effects.  Nausea, vomiting, the poops.  But ... wait!!! There's more!  It goes on to all the fantastical ways this wonder drug can kill me or at least render me pretty  unrecognizable. 

Well ... shit. 

No.  I am not immediately latching onto the mere speck of possibility that something bad could happen from the medication but ... it is always good to be aware of what COULD happen.  Or, the symptoms that could lead to said bad things happening.  Like the confusion, dizziness, etc.  Those are all small indicators of PML.  PML is an acronym of this really long world that means the protective sack around your brain erodes away leaving our control room vulnerable to attack. 

Sounds fun, no? 

Anyway, it just kicks open that door of worry that I fight daily to keep closed. I am aware I have this disease.  I am aware of it in everything I do.  People like to remind me too.  As if I could forget.  But, I see why they do.  I try to live like I am NOT sick.  I live like I'm still that healthy girl who could do anything on 4 hours of sleep a night.  It's good to be reminded.  Because, even though I listen to them and myself, I don't follow the advice.  I'm horribly stubborn at that.    But, like I said, the door of worry has burst open like a massive gust of wind just tore through here.  The worries are springing from the door like horses from the gate in the Kentucky Derby.

What if you get that brain thing?
What if your kidneys start to malfunction?
Are you out of it from being tired or is your brain starting to wobble?
What if you have to miss a shit-ton of work?
Hmm, my ears are muffled ... is this permanent or just the same annoyance?
What if you die?  Who will take care of Loki? What will happen after you are gone?  Have you lived enough of a life yet? 
Will anyone remember me?

Yes, among the important "What if you die?!" worries ... there are the dumb insecure girl ones that wonder if people will remember and miss me when I am no longer in their face all the time.  I'm human ... humans need love and affection.  These are important to the mental health.  Allow me my insecure teenaged girl thoughts!  I'm the one facing them, not you.

This is where the title comes in.  "Don't Look Down"  In my life, with this disease and these crazy heavy medications, I am constantly standing on the edge of a very steep, sharp cliff.  In front of me, is a tiny, uber thin, fishing line type wire that stretches from one edge of this cliff to the safety of the other side.  I need to walk, one foot in front of the other, along that thin line without allowing my gaze to stray downward.  If I look down ... I'll see all of what "could" happen.  If I keep focusing forward, I might make it to the other side unscathed. 

As a writer, I need these sort of visual aids to help me out.  I've always been a creative, left brain thinker.  I like pictures and demonstrations.  So, I will do what I need to do to get through this. 

It's just a small bump in the very long road that is the rest of my life ... hopefully.  I'm not in danger right now.  I'm not.  I know that. It's my very worry wart brain that likes to freak out and run for the hills screaming that the sky is falling.  Yes, my brain is very much Chicken Little.  I entertain those thoughts, acknowledge that they are silly .. and then fight to shove them back into the box again.

I vow to try and be more positive.  After all, I have to keep my eyes forward. 

Saturday, August 29, 2015

In Your Hands

During a heated discussion last night, I found myself saying things that I should listen to in my own life.  Because, I know these things to be true, I just don't implement them for some godforsaken reason.  So, perhaps now, I'll make a conscious effort from here on out to heed my own advice. 

What were these sage words of wisdom, you ask?

I was telling someone they need to find a way to be happy even in the face of tons of negativity.  I suggested finding things to make them happy, to focus on the good things in their life, and not be so wrapped up in things that they have absolutely zero control over.   I suggested controlling the things they can and making what they can good.  

I need to do this too.  

I am in the negative profession.  I deal with bad and worse.  I also can be surrounded by very negative people, negative happenings, and major problems.  My best actions can be not getting sucked into the vortex of crappiness.  Because it doesn't do me any good.  Stress is a nightmare on the body.  It affects ALL the major organs, disrupts sleep, makes people eat like crap, and generally makes us pretty unhappy people.  

There is SO much negative in this world that it is hard sometimes to avoid it.  It's on the news, it's on our phones, popping up via text messages.  Our friends are talking about it.  We can't get away from all the bad that is out there in the world.  There are entire televisions stations dedicated to it.  So, how do we avoid it? 

I can't pretend that I am the expert in how to save yourselves from it if I haven't made a good practice of those things myself.  But, I am going to.  I realize after finding myself giving out this advice that I should make these changes in my own life.  

I sort of already had without noticing it.  I'd made a vow that my Facebook Posts would be positive and happy.  Sometimes funny.  I wouldn't take to the Facebook airwaves to whine, bitch, moan and complain.  The world doesn't need to know I am in a bad mood.  Announcing it only solidifies it and makes it stick.  And you know what?  I hate whiners.  I hate it so very much and then I find myself whining more than the people I hate that whine.  Ugh.  It's horrible. 

So it's time to change.  Let's change.  

Clean eating:  Check
Better focus on sleep:  Check
Walk at least 20-30 minutes a day: Check
Posting positive things on social media: Check
Doing things I enjoy EVERY day:  Check
Acknowledging the good things around daily: Check

Small, inconsequential things aren't they?  And yet, they will have a monumental effect on my mood and potentially the moods around me.  Wouldn't that be a good thing?  That would be a better legacy than the one I acknowledged in my last blog entry.  Perhaps, I'll only leave a major void in the dispatch work schedule but ... if I can leave the world a little more positive because of my influence, that's something too. 

I also mentioned in the last blog that I have to keep my whines to myself.  Yes.  I do.  But, not because people don't want to hear them.  I've decided that I don't want to give any weight to them.  I want to squash those words before they ever enter my mind.  I want to shake them off so that they don't change this positive motion I am trying to do.  

Each individual has the power to change their moods, their situation, their lives.  It's up to us.  It's up to me.  I'm in charge of me.  I have no children to mold into positive, happy, people.  All I can do is mold myself into a positive happy person and hopefully that will spread to others around me.  

Care to join me?  

Monday, August 24, 2015

I walk a lonely road ...

Someone once told me that life is all hills and valleys.  Or ... it was something to that effect. In any case, it meant that sometimes things are good, and others we are down in the dumps.  Or maybe it's something to do with things going downhill ... or being an uphill battle?  No?  Anyone?  Whatever.  Just roll with me, OK?

My life is nothing but hills and valleys that's for sure.  You know what?  That saying doesn't work.  Because, it can be used either way.  I could say it feels like life is nothing but an uphill battle or that I feel like I am constantly going downhill.  Let's just say it's bad, OK?

I admit to being in denial about my health.  There, I said it.  I'm in denial about what can happen, or what is happening.  I find excuses for everything because it's not possible that I could have these things wrong with me.  I'm a healthy adult female. 

Except, I am not. 

No.  I'm not well at all.  This could be my own doing.  Too much work, not enough sleep but, in any case. . .  My teeny, tiny, brief reprieve from feeling like garbage is over.  I'm feeling worse now than I have in months.  Probably since before I had started my last medication.  And, it isn't like I just feel off and run down.  Nope.  I am in pain day in and day out.  Aching, throbbing, screaming joints, headaches, spasms, etc.   Pain meds do nothing for it. My sinuses throb and throb and throb, my eyes feel like they are going to explode from my head like a couple of popped grapes.  My major joints (knees, hips, shoulder, elbows, ankles, wrists, neck) hurt as if I just ran a marathon or hiked the Pacific Coast Trail. The teeny joints want to participate too and the finger joints and toe joints also hate everything in the world. I get dizzy and feel a bit spacey.  I find myself without balance from time to time, I fall over easy.  It's really quite weird.    My teeth throoooooooooooob!

That's just the tip of the iceberg.  I'm not a happy camper.  I feel very distressed by the things that are happening and ... I feel incredibly alone in this.  I don't want to hear "Call the doctor and tell them" whenever I mention not feeling so great.  I don't want a lecture, I don't want to be given a list of things I need to do.  Sometimes, I just want someone to listen, to BE there for me.  A hug to let me know that I am cared for. 

Because, right now I don't feel that at all.  I feel pretty isolated and that I am supposed to keep things to myself.  Keep smiling, don't let anyone know I feel tired or sick.  Don't be myself.  Be a robot.  A machine. 

I don't want to.  I want to be able to cry and scream at the world about this.  I want to be able to get mad about things.  I just don't want to feel like I am fighting this battle by myself. 

Did I do this to myself?  Have I created this persona that can handle anything that's tossed at me and keep going?  Oh yea, I could have taken my diagnosis and pinned it on my shirt and been like "Nope, I don't want to work extra ... I'm sick."  But, that goes against what I have done for the last decade.  I've helped.  I'm a helper.  It's what I do ... and what I continue to do to the detriment of my own health.  I don't seek any reward for it, or any special accolades.  I am just doing what I always do.  However, I don't think I should have to be a robot in that I can't complain.   I have to listen to everyone else complain for a variety of reasons, so why can't I?  Mine are valid.  They are my complaints and that makes them valid.   Alas ... I cannot.

Shake it off, pretend nothing is bothering me, just keep swimming, just keep smiling.  Don't say anything about how you feel because it will not be received well.  It will be followed by a lecture. And really, who wants to be lectured when they feel alone?  No one.  Trust me. 

So there's that ... I also feel terribly alone and terribly sad.  Especially when I think about what's going on in my body. I get sad that something bad could happen any minute.  I think about what that will do to my brothers ... to my dog.  And then I think about the impact of losing me.   Some people would leave a trail of devastation behind them.  I would just leave a giant hole in the work schedule that needs filling.  This is the legacy I leave behind. 

Sad, isn't it?  What kind of life is that?

I'm not writing this for any attention either.  I'm just putting the words down on paper (or computer screen?) so that they stop pressing down so hard on my brain and heart.   After all, it isn't like I can say anything to anyone about it.  People don't understand and I don't expect them too.  No one can actually understand what another person is going through, even if they went through the EXACT same thing.  We all experience and process things differently. 

I'm in a deep rut.  I don't know if I feel like this from flaring up or something else?  I'm sad and quite frankly, incredibly depressed.  It feels like I am constantly sinking and I'm flailing about trying to grasp onto something for help and ... I can't grab onto anything.

It will get better.  I'm going to see my doctor on Tuesday (next Tuesday) and hopefully I will turn a corner and get better.  Even if it means taking the very dreaded, very awful, prednisone.

Sometimes, we have to do things that we don't like.  For me?  I have to do a LOT of things I don't like.  This is my life now, not much I can do about being sick, right?  Still ... I shouldn't have to keep it all to myself because people don't care to hear.  I shouldn't have to walk this road completely alone. 

Monday, June 29, 2015

Guess who?

It's everyone's favorite whiny-pants, Nicole Grace.

I don't know what tipped me off that I had neglected to blog in a really long time or why I am even doing this.  It was all started to keep people apprised of me and this godforsaken illness that I hate more than I hate anything in the history of hating anything.  And, since I am doing something now that will hopefully help with that blasted disease, I figured I would come here and document it.  I have learned that the more I write stuff down, the more I stick to it. 

When I last came here, I wrote about the immune system.  I think.  No, I'm not going to go back and check but I distinctly remember writing in this very blog about the immune system. 

Need a refresher? OK.  Here goes ...

Ye olde immune system lives in your gut.  Plain and simple.  Dietary choices can wreak HAVOC on said immune system and honestly, even knowing this gem of information and how my immune system has already been wrung out to dry, I still haven't made the best of choices in what I shove into my face.

Until today, I've hung up my sugar addiction, I've put my soda addiction long behind me.  It's time to make sure I only eat healthy things from here on out.  I don't want to be as sick as I was before and I certainly don't want to be sick like I am now.  I've done this before, I know the health benefits I can get from it and I know how fantastic I felt while I was doing it.  It's just a matter of getting over that hump called 'withdrawals'.

It's going to be hard.  But, no one ever said anything would be easy.  When they say things are easy, don't trust them.  They are lying to you. 

I apologize in advance to whomever comes in contact with me over the next two weeks.  The withdrawal period is going to be rough but the results afterwards will make it all worth it.  I know this.  Everyone around me knows it.  I should just be very careful about who I talk to over the next couple weeks so that I don't unleash the beast. 

I've been on edge lately with some snide remarks made not directed towards me, but that have revealed the true nature of some people around me.  Then, there are comments that someone has made that I know are meant to be helpful, but she's not the greatest at tact so ... they've come out insulting.  I know this and ... while I consider myself thick skinned, I've gotten pissed.  Not hurt, just pissed.  I think no one has any right to judge anyone else for any reason.  Especially someone like this.  I've bitten my tongue several times because I know saying anything just makes me look like the bad guy.

What it must be like to be pretty so that everyone defends you even when you are wrong.  Oh well.  It is what it is. 

Revenge is a dish best served cold.

So, anyway, back to the matter at hand.  I will be making better choices from this moment forward.  Once the withdrawal is behind me, there will be no going back because I don't want to have to do it again.  This is not a diet, this is me eating so that I can feel good and I can have a normal life again without constantly feeling like I just want to go and lie down and sleep for the rest of my life. 

Speaking of which, I am so unbelievably tired and worn out right now.  I just want to sleep.  Like I mentioned above ... I feel like I am fighting something really bad.  Of course, it could just be plain old fashioned exhaustion.  Because we all know I work too much.  I mean, I know it ... how can I not?  That's all anyone ever says to me.  Not thank you ... not I appreciate you ... just that I work too much.

That's funny.  I don't seem to complain about my hours.  Nor do I mention how long my shift is.  And yet, I am the one who is constantly lectured.  Hmmm.  Dually noted. 

OK.  I think I've been whiny enough for now.  I'll check back in to update the progress of the clean eating and how I am doing.

Thursday, May 7, 2015

Nowhere else to go.

Here I am again, right back where I started from ...

No. I don't have cancer again.  *knock on wood*  At least, that blood work hasn't come back yet and I missed my appointment with my oncologist so for all I know it's running rampant and I have no idea.  But, let's think positive, shall we?

Well, at least where cancer is concerned.  In the world of Wegener's ... I feel like I am spiraling down the rabbit hole again and everyone else thinks it is all in my head.  Believe me, I wish it was just in my head as well.  

Something is wrong. 

Terribly, horribly wrong.

Am I in the hospital trying to figure out what it is?  Nope.  I'm at work.  I'm trying to continue my life because its clear that the doctors don't really care so why should I, right?

Over a month ago, my throat started hurting bad ... glands would swell up.  I'd sleep and then feel a little better in the morning only to feel bad again at night.  A week and a half ago, it felt like I was finally going to get the nasty cold that my throat had been hinting about for weeks.  I started coughing and coughing and coughing and getting nothing out.  My chest was tight, I felt dizzy standing up.  So ... I stayed home.  I tried to go back to work only to head home after an hour. I called the doctor as things were getting worse and got antibiotics and an inhaler.  Cool.  The doc I talked to said call in if nothing changed and I would need a CT and a chest x-ray.  Wednesday night I was on the line w/ the advice nurse again because now my sinuses decided to protest my body ... and Thursday morning I was back at Kaiser but only got to see a Nurse Practitioner who said that I had a sinus infection and didn't need a chest x-ray or a CT of my sinuses.  I was given a steroid nasal spray even though I said I didn't want that because my nose was in agony and the nasal sprays only make it worse.  I was given a different antibiotic as well. 

Guess who ended up in the ER Saturday night? 

Yes.  This girl.  I couldn't stop coughing, I couldn't breathe.  It felt like my lungs were, quite literally, on fire.  I kept expecting to open my mouth and have flames come shooting out.  The pain was awful ...

The ER ordered the x-ray ... but really, there was nothing of course so ... I was sent on my way again with a steroid inhaler and a small dose of prednisone. 

Wednesday night it felt like someone too a very hot, very sharp blade and slid it between my skull and spine, separating the two.  The pain is unbearable.  It burns at the base of my skull and radiates up the back of my head.  Sometimes, my shoulders also feel the same pain.  It makes me think it's a nerve thing but ... I can't get my chin all the way down to my chest.  I emailed the doc and was told to go get labs done today.

I did that.  But ... I also started coughing up blood again today. 

I'm having flashbacks of early 2013.  Things are not good.

I came back to my desk after another little episode with the ol' blood in my spit and got a major dizzy spell and that pain has returned to the base of my skull.  I am sitting here trying not to cry.  I'm trying not to feel like I am in trouble.

Honestly, I complain so much lately that I find myself trying to mask it.  Smile, nod, be polite, don't make waves.  Don't cause a burden.  I hear what people say when there is a sick call.  Nothing makes me feel worse emotionally than having to call in sick right now and cause an even bigger burden to our already strapped center.   I hear how upset people are, I hear how tired they are of working. 

I'm scared.  I'm frustrated.  I feel very alone.  A lot of what goes on stays inside and never gets let out. 

All I want right now is to be taken seriously.  If I have to spend a day or two in the hospital while they run every test imaginable ... I would do just that.  Even if those tests are excruciating. I just want someone to be able to say "It was (wegeners or something else I don't care) and we will take care of it."  Instead of, "we can't find anything, I'm sure you are fine."
That's all.  I want someone to acknowledge that I am SICK!

I am sorry to vent here but ... it's my blog and I have nowhere else to go.  Everyone else makes remarks that push me to the 'get over it' sort of feeling.  I'm scared and I feel terrible.  I just want to know why and to take care of it. 

Am I asking too much? 

I feel lost.  I feel alone.  I am so beyond over this that it isn't even funny.  No, I'm not a cancer patient, I am not going through chemo or fighting this major battle that everyone is familiar with and sympathetic about anymore.  But, I am still fighting every single day and I hate how I am being treated. 

I just don't know what to do anymore. 

Thursday, March 12, 2015

What is left behind

What's the meaning of it? 
We're born, we are adorable babies, cute toddlers, 13 years of school photos, prom pictures, that cap and gown event, maybe college, we work, we shoot for these incredible goals for our lives and then ... we die.

We all die.  There's no avoiding it.  No one gets to live forever.  Some of us might get to live much longer lives than others but all of life ends.   Plants die, people die, even inanimate objects fade and lose their luster.  Nothing remains the same ... ever.

What is left behind when we are gone?  In most cases, it's a plaque, or a carved stone with our names forever immortalizing the time we were here on earth.  That's it.  People walk by them, kids sneak around them.  Sometimes, punks even desecrate them.  But, that's all that remains. 

Across the world there are thousands -- no millions -- of tombstones, masoleums, headstones, memorial plaques, ... you name it.  Something is out there to memorialize every person that has walked this earth in some fashion.  Even if you are one of the nameless or unidentified people who died in various mass deaths, there is something dedicated to you as part of a group. 

It's become more and more clear that I am not the only person who is fascinated by the concept of death.   I love all things cemetery.  I always have.  I believe in the paranormal.  I think there are people who haven't left this world.  Physically, their body has ended it's time here but, something keeps their metaphysical form here.  As with most who believe in the paranormal, I think it is a sort of tragedy or immense and horrific sadness that keeps people behind.  Unfinished business is thrown around a lot.  I say "perhaps" but, everyone has unfinished business so ... it has to be something major to keep a spirit hanging on to this world. 

In every case, our lives are reduced from sometimes being larger than life to just a piece of granite or marble.  Our entire existence and all the things we achieved while we were living and breathing is all summed up in two dates with a dash in between. 

The day we were born and the day that we died. 

Photographs that capture happy memories can easily become sad when someone in that photo has passed on, especially if they did so far before their time and/or in some tragic manner.  I think about that every time there is a story of a murder or a tragic death on the news and they slap a small montage of photos of the deceased.  Everyone in the photo is smiling and happy.  It's a perfect moment captured in time.  When everyone in the photo was here on earth, it was a fun memory, a happy day.  Then, the entire tone of the photo changes when someone died.  

At least in 2015 photos are easy to take.  Back in Victorian times, 6 out of 10 times, the only photograph a family had was of one of their loved ones after they died and most of the time the photo was of a child.  Sad, but wonderful that they were at least able to capture an image of their loved one. 

I think of these crazily famous celebrities.  Their lives are SO big.  Everyone on the planet knows who they are, what they do, where they grocery shop, what they had for breakfast, etc.  They are on top of the world.  There is no one more famous than they are and then ... they die.

This person who was all over the news and in every tabloid magazine is just gone.  No more will the paparazzi chase them down and make their money taking new photos of the celebrity.  They can't.  They are dead. 

All that remains is a slab of marble with their names on it. 

Just like everyone else. 

It doesn't matter what we do with our lives while we are here on the planet.  Even if we make the biggest difference and change the entire world ... we can't live forever.  We will still just be a tombstone in a cemetery, a plaque in a mausoleum, a dedicated park bench, or a concrete square in Disneyland. 

We all want to be remembered. I don't think anyone really wants to just be forgotten in this world.  But, we spend too much time trying to make a mark on the world we live in.  That's great.  We should all want to better the world we leave behind for generations after us.  But, I think there's too much emphasis on being remembered.  We should embrace the time we are here now ... not work to hope that our memory is a good one.

I walk through cemeteries and I wonder about the lives lived by the people who rest around me.  Were they happy in life?  Did they enjoy the simple things?  How did they die?  What sort of life did they live?  I have so many questions about the people that they were so ... everyone IS remembered in some fashion.  Our names are etched in stone, how could we ever truly go away?  So, we shouldn't fight so hard to make sure we leave a mark.  We should just live.  We should just be happy. 

Life is right now.  This is life.  We are living it every single day.  If you are a goal setter, you're happy setting goals and breaking them so you're doing what you should be doing.  But everyone else who feels the weight of not "doing enough" ... you are.  We all are.  We are living.  We are people on this planet and soon we will be marble stones on the planet.  We will be etched names and dates for other taphophiles to walk by and wonder about.

Live.  Laugh.  Love.  And like wise men once said "Don't take life too seriously, you'll never get out alive."

Monday, February 16, 2015

The Worst Critic

As a writer, I know that I will be thrust into the eyes of critics.  At least, I hope my work can travel far and wide enough to be seen by people who critique my work.  It could happen and I will have to prepare myself for the absolute worst.  Alas, no one can top the thoughts of my very worst critic ...


Gosh, I am the hardest person to please when it comes to my actions.  It is especially worse when it comes to what I write.  I write and re-write and then I even delete.  I'm horrible.  I'm a book lover and I read so many amazing books that when I sit back down to work on something of my own ... well, I hate everything that comes out of my brain.  My grammar doesn't seem right, it's juvenile, it's too old for the character I am writing. It's just not as good as that book I read, etc.  I am vicious when it comes to looking over my own stuff.  Even when I finish something and feel amazing about it ... it only takes a few days for me to peek back at it and hate every word.

It's a sickness and there is no cure.

Where is all this coming from?  Oh ... a little issue of me sending "Until Forever" my 4th finished book off to the editor for her to rip apart.  Suddenly, I am hating that book.  I hate everything about it! It's dumb.  It's not the amazing love story I was trying to write.  And, I am expecting a scathing report from the editor.  But, it's OK.  I am expecting it.  I will accept her advice and suggestions and I will tear into that book and make it better.  In the meantime, I will be imagining all the horrible things she will say about it.  Let's hope she isn't as mean to me as I am to myself.   Cross your fingers for me.

It's weird, this editor thing.  I know it's all part and partial to the whole publishing process but, it's nerve wracking, it's worrisome.  It means more work on something I had hoped to be done with.  And, in the end, it still doesn't guarantee that the book will be published by an actual publishing house and distributed to bookstores.  Nope.  That journey up the mountain still lies ahead. 

Yep.  I am going back down the literary agent path.  Once I am finished completely (after I get the edits back and set to work on fixing it) I will work on writing the ultimate query letter.  I will sell myself down to the barest part of my writer soul.  I will throw myself at the feet of the agents I can find and hope and pray and knock on wood and rub rabbits feet, wish on shooting stars and go back to dreaming of the day that I will have an agent.  And ... while hoping and praying, I will have my dreams ripped to shreds piece by piece with every rejection letter I receive.

No, I am not being harsh to myself.  It's just part of the process again.  I already have several saved in my email to remind myself of how that sky high hope came crashing down around me with each and every email I received. 

It's funny, really.  When I sent out the query letters, my brain told me not to get my hopes up.  My brain expected rejections because I am a realist.  But, my heart was full of this childlike hope that this was the moment that my life changed.  The dreams I conjured up as a wee child learning to piece stories together in both my imagination and on paper could come true in any given moment.   Oh how I longed to walk through a bookstore and see myself on the shelf.  Or, to see someone in town reading my book.  Mine.  My name no longer a nothing in the great big world. 

Of course, then there was the ultimate, craziest of dreams:  My book being adapted into a major motion picture screenplay.  Actors I have long admired bring my characters to life on the silver screen.  It possibly being nominated during awards season.  can you imagine?

I certainly can.  But no one ever said I had no imagination. 

First, I have to get over myself.  I need to set aside my harsh words and let the actual critics do the talking.  I have to learn to believe in myself, to breathe my life and love into the words that flow from my fingers on the page. 

So, while I wait for the editor to rip it apart ... let me start this other story. 

In 1880, there was a beautiful girl named Sadie Banks....................

Tuesday, February 10, 2015

Where did the time go?

Eighteen years ago on February 9th, 1997, I was a bratty seventeen year old girl.  I knew everything, couldn't wait to grow up and be on my own and didn't need my parents.  One day later, the wind was taken out of my sails and I realized just how very wrong I was. 

We never stop needing our parents. It doesn't matter if we are in our 60s-70s when our parents die.  It will hurt just as bad.

February 10th, 1997 was the day my mother died from a violent strain of pneumonia.  In the two weeks she had been hospitalized I was the one saying 'It's 1997, people don't die from pneumonia anymore.'  Remember when I said I was a teenager who knew it all?  Yea.  I was certain of my knowledge of health care.  But, again, I was super wrong.  My mother died from pneumonia in the late '90s.  Apparently, it happens. 

It is crazy to me that there are memories in my life that are hazy sepia toned images that I can only remember bits and pieces off.  The edges are torn and frayed, the image is fading.  But, that day I remember as clear and as vividly as if I was living it right now.  It was my day off from school because it was a holiday (Lincoln's birthday or President's day, I don't remember that part).  It was super sunny.  I remember very blue skies.  I remember the sweatsuit my dad was wearing because he was sick.  I remember the sound of the phone ringing as my stepdad called from the hospital with an update ... or was it my stepmom.  I didn't answer the phone so the details of that call aren't in my head.  My dad was perched on the edge of the porch chair when I heard him say "She's gone?"

Something clicked in me then and I walked past him, walking briskly to get away.  Where was I going?  I don't know but I wanted to get away from what was coming.   My mother's friend grabbed me and hugged me to her and I heard her say those life altering words to my mother's other friend.  "Pat died."  How clearly I hear her voice.  How those words often echo in my head right next to my Nana telling me that "Daddy's gone."   My world flipped on its head and broke apart. 

Gone was the smart mouthed 17 year old.  In her place was a screaming toddler yelling for her Mommy.  My heart still breaks at the memory.  It's as sharp as the first moment.  Time doesn't dull the blade of this type of pain.

My mother and I were not close as far as mothers and daughters go.  Like I've said a few times in this entry, I was a smart aleck, I thought I knew how the world worked.  We fought like cats and dogs, we were like oil and water.  She was highly critical of me and I was as deserving of those critiques as anyone.  But, we fought.  We fought up until her very last day.  Her very last words to me called me a name I will never forget and I can't ever let that go.  I deserved every syllable of that word so don't take it as something my mother did wrong.  I owned that word because looking back ... I was everything she said I was.

As time passes, I wish more and more I could have done things differently.  Eighteen years is a long time.  I find that I can't recall the sound of her voice.  I don't remember what she sounded like.  I can see her in my head, shiny black hair, green eyes.  Her reebok shoes, blue jeans, Jovan Musk cologne that she wore because she was allergic to perfume.  Her kooky earrings she often wore for every holiday.  The way she sat on the cough with the phone cord wrapped around her finger, bouncing her leg while she talked on the phone.  Her nails were always filed to a point and painted, always painted.  She washed her face with Noxema and never farted around anyone.  But, she still found them funny.  I went in to say goodnight to her once and she had farted in the bathroom.  I made a face and I just remember her laughing to the point of tears. 

Oh yea, she did that too.  Sometimes, I think that is the only part of my mother that I got.  When I get to laughing about something, there is no stopping me until the tears are spilling down my face and even then ... it doesn't stop.  My dad did that too though so I have double the laughing problems. 

I wish I could have learned a few things about being a woman from her.  I never properly learned to cook, or clean very adequately for that matter.  (No, I don't live in filth, I just feel like I could be a lot better at it)  I wish I could have learned about my family, about my heritage. 

I can't believe it's been eighteen years already.  If I had a child the day my mother died, he/she would be entering into their adult life now.  Just one year older than I was when my mother died.  No more wiser at eighteen than I thought I was at seventeen.  In fact, a lot less wise than I thought I was.  Humbled by the harsh reality that life doesn't go on.  People die and will continue to die.   My picturesque childhood began to crumble on February 10th, 1997.  Things I never knew because I had been too young to know started to become clear and real life started. 

Anyway, people often ask if we could go back in time to any point in our lives.  Well, I would go to any day before January 12th, 1997.  It would be before the big fight with my mother where we would literally speak our last words to each other.  It wasn't much after that when she got sick and was down for a few days at home before being hospitalized.  I never turned the dreaded age of 17.  Back then, I couldn't wait to be 17.  It was an age I idolized since childhood.  I wasn't aware of the nightmare that being 17 would be. 

I'd give anything to go back to a time when both my parents were alive and my entire family was intact.  My brothers were little, my family was together and I didn't have all this damn responsibility, no cancer, no Wegener's, no mortgage.  It was the best time in my life contrary to what teenaged Nikki thought. 

If I had a time machine, that's where I would go.  At least then I could hear my parents voices and remember what they sounded like.  I could look in their light eyes and wonder why I never got light eyes when both of my parents had hazel or green eyes.   I could hear my father laugh and sound like he was a deflating tire.  I could hear my mother's voice saying my name and not in an angry way.  I could see them actually looking back at me from inside .. not the blank stare I see when I look into photographs. 

Eighteen years ... and it still destroys me to think about it. 

I miss you, Mom.  I wish I could tell you how sorry I was for how I acted.  I was really stupid.  I learned that right away ... but I know it even more now.  I love you and I haven't for a moment forgot you.  I just can't "hear" you.  I hope wherever you are now, you are happy again.  Are you with your parents?  Have you seen Dad? 

Questions there will never be answers to.  What're ya going to do?

Friday, January 16, 2015

The Whole 30 at 35

It's no secret that my body functions better without eating a bunch of crap.  To be honest, no one has a body that functions well on crap.  We just choose to ignore the signs/symptoms of food intolerances.  For someone like me, ignoring those intolerances isn't helping the bigger picture.  Would you like an anatomy lesson again?

OK, for those who didn't read my other entry on the benefit of clean eating.  Where does the immune system live in our bodies?   Anyone?

That's right, boys and girls, the immune system lives comfy and cozy in our intestines.  It is in that whole system that our body grabs nutrients and ships them off to where they belong in the body.  Alcohol is turned to sugar and shot at the pancreas, fat gets broken down or stored, and ... our white blood cells are nourished to fight infection!  The immune system is what keeps us going.  When we feel blah, sluggish or like we are "fighting something" we really and truly are "fighting".  Your immune system goes into high gear zapping the bacteria and viruses that are threatening us and that makes us feel "run down".  It's rather a sophisticated system.  I learned a lot about it when my gall bladder decided it wanted to move out.  Anyway, that's where the immune system is and ... for me?  My immune system is badly broken.  It's confused and self destructive.  It's kind of like a Emo-teenager, self harming every chance it gets.  I take medication to get my immune system to be more like that of a lazy teenager, sleeping a lot and not really doing what it should be doing.  Why?  Because it's confused remember?  My immune system is an idiot and seems to think that things like sinuses or kidneys are the enemy. 

I know how to fix this and I have been lax in that for awhile.  So, recently, I started to get back on track.  I cleaned up my eating.  NO SODA because there is mountains of sugar and sugar substitutes are horrific on our health for even the most healthy person so I definitely refrain from fake sugars.  But, no soda.  I also cut out gluten products and other processed sugars.  I didn't go completely strict but ... I was doing alright.  I had told my doctor I was starting to do that.  One of my friends kept suggesting The Whole 30.  Our supervisor was doing that and the health benefits are incredible.  I started looking into it and my general doctor was way on board.  She had said a clean, fiber rich diet would be amazing for me.  So ... I started looking into it even more.  Honestly, the eating plan for The Whole 30 is something that I should adapt at all times but, at the very least, I need to commit to it for a whole 30 days to start with. 

What is it?  Meat, Eggs, Vegetables, and Fruit.  Seems fairly simple right?  The vitamins, and nutrients obtained via these foods are all naturally occurring.  No one takes an apple and injects it with more sugar to make it sweeter.  Nope, it happens in nature.  Vegetables are fiber rich and yes, some of them have carbs.  Honestly the "low carb" lifestyle people so crave isn't talking about vegetables because if you cut back on those you are definitely missing some key ingredients that your body needs.  But, hey, no one wants to take advice from the fat girl. 

Honestly, the extent of dairy that I want is something like goat cheese.  I love goat cheese and would love to be able to add that back.  I already use a lot of coconut milk in things anyway so my dairy intake is usually limited to a serving a day but ... who knows what I will do after 30 days. 

Here it is folks.  I will be starting The Whole 30 on January 19th, 2015.   I will be strict.  I will be hard on myself.  I am looking at this from a health perspective.  If I lose weight in the process, good deal, if I don't but I feel better so that I can go back to working out like a regular person?  FANTASTIC!  Being able to live some semblance of a normal life would be the epitome of everything.  I would like to start living and not counting the minutes until I can get back into bed.  I am only 35 years old (oh god, I am 35).  I don't want to die this year like I fear ... and I know that doing things to improve my health so that I can enjoy my time on this earth will only be a benefit to me both physically and, more importantly, mentally. 

I do not intend to preach my eating habits on anyone.  I don't look down upon anyone for doing anything any differently.  We are all fighting our own battles that may not be visible on the outside.  What's major to one person might seem minor to another, but that is not our place to judge, is it?  Someone might look at me and see an overweight person who seems relatively healthy, weight aside.  They don't know I am fighting a battle against my own body every single day.  They can't see inside me and it isn't my place to announce it to the world.  That's my issue.  It in no way diminishes someone who might be facing something bigger or smaller or equal.  We all have our battles, we all choose to live our lives how we see fit and that is the beauty of being individuals.

Now, I've said enough on the topic.  I am trying to look at life in a more positive light right now.  I am trying to see the world differently than I've looked at it in the past.  Will I be successful?  Probably not everyday, I'll admit it.  I might falter.  I might whine.  But, once again, that's my choice and freedom to do so. 

I hope you have a wonderful day. 

Tuesday, January 13, 2015

I'd like a refund

As the minutes tick away the end of my 34th year on earth, I am feeling myself sinking further into a sort of depression.  Why?  Well, the last few birthdays have been just sort of ... eh.  No, it isn't because there wasn't a grand fete thrown in my honor.  I've learned that once we become an adult, the birthday parties sort of become a thing of the past.   It's more that I've been miserably unhealthy for my birthday.

The trials and tribulations of my health battle continue. Over the last month or two, the reactions to my medication have become worse.  I am now quite miserable for the entire week.  It tapers back from injection day to the weekend just before I have to have an injection again.  But, it always ramps up crazy after that stupid shot.  I've broken down, researched other meds that my Wegener's peeps use, and made an appointment to see the doctor about changing the medicine.   There is one that I want, desperately, because if I tolerate it the side effects will fade away!  Oh to feel somewhat normal again.  There is no greater hope. 

While I focus on getting to the 20th where I can throw myself at my rheumatologist's feet and beg her for the medicine, other things are happening.  Like, the massive lump on my spine between my shoulder blades.  I don't think it's attached to the spinal cord.  It feels mostly subcutaneous but it doesn't really move around like it's near the surface.  It's definitely not something that can be popped (believe me, the husband tried).  It is red hot!  It's all red around it and you can feel the heat radiating off it.  My neck hurts, my shoulder is starting to hurt now.  My neck is a constant pain which makes me think that the cyst is pressing on the spine in some fashion ... and then I have been having shooting pains in my left shoulder.  No.  It's not a heart attack. 

Dan is worried about cancer again.  He said the lump could be a tumor.  I replied with "It's not a tumor!" and then, Arnold's voice was in my head and I snickered.  Dan didn't see the humor in what I said because he is convinced I am not taking this seriously. 

Yes, there's a wee voice in the back of my mind who is murmuring about plasmacytomas.  After all, I had one in my neck that had globbed onto my salivary gland. That had also been just a lumpy thing in my neck that was passed off as an "inflamed salivary gland".  We all know how that turned out.   So, in order to remain relatively sane, I am telling myself that Mr. Lump is only an inconveniently growing cyst and not a dang thing to worry about.  It's just strange.  There's no bite marks, so it wasn't a love bite from a sneaky spider.  There's no clothing item that really rubs there so it's not like it was irritated by something.  It's not an ingrown hair because thankfully, I am a girl with a hairless back, minus the regular peachfuzz every human has. 

I fear there will be another minor, locally anesthisized lumpectomy to make sure it's nothing to be worried about because that is how ol' Dr. Z rolls.  Unfortunately, the first chance I have for anyone to look at it is that same doctor's appointment on the 20th.  There were no earlier appointments available.  I'll have the rheumatologist look at it and see if she sees anything to be worried about in relation to my major disease ... Boris the bastard never sleeping dragon, aka Wegener's Granulomatosis or Granulomatosis with Polyangiitis.  (Why are there so many I in that word?).  If she is concerned in any fashion, or if she thinks it needs further review, I will call Dr. Z's office and see if he can poke at it in all his cancer seeking wisdom. 

Unfortunately, this just means my 35th year is not starting out any better than my 32nd, 33rd, or 34th.  Is it any wonder there is a heavy sadness that I drag around with me wherever I go?  I never feel good.  I feel like I am fighting the worst flu imaginable ALL THE TIME.  Lately, the nausea is intense.  I lose my appetite SO easily.  I just want to lie down.  I feel needy and just want people to hold me and talk me through it.  My body aches, I feel feverish.  There are days when it takes every bit of concentration to pick my feet up off the ground to take a step forward.    How can someone feel happy when they feel like that? 

Some of the tiredness is my fault from working too much.  I don't have a choice there ... so I continue to trudge along.  At the very least, I can brag that how many people can feel the way I do and still bust their ass like me?  Not many, let me tell you.   I am working on my lying.  I want to tell people I feel fine because it's sort of annoying even to myself to be asked how I am and I say "Horrible".  Who would even want to keep talking to me?!

Oh 35 ... I have dreaded you for the last few months.  Not because of your number.  No.  I dread you because I live in fear that you are the last birthday I will celebrate.  I don't know why.  I just do.  Something feels so ominous about you and ... I am scared.    I am not ready to leave this place.  I haven't yet done enough living.  Hell, please just let me see my house finished.   

I wish I could do something for my birthday.  Anything to make it feel like a good day, instead of feeling like I am turning down the final corridor of my life.  Maybe it's just the sadness ... maybe that's why these feelings have come.  I can't explain it.  The nightmares about dying are more frequent.  Like ... I see the white light and I find myself running the other way. I wake up with my heart absolutely racing.  Sometimes, I can't seem to regulate my heart beat and it's all over the place which makes the anxiety worse. 

I don't want to die.  I have been taking the steps to make the shell that this sick person lives in look and feel better.  Except for the cheat day I will be having tomorrow ... I will not be eating bread, no processed/added sugars, very limited fruit, lots of veggies and protein.  Very clean. I want to lose weight so that, at the very least, should something happen to me ... I'll be pretty before I go. 

I know this is very melancholy and I apologize.  But ... I needed to get this off my chest. 

It's just a cyst.  It's just a cyst. It's just a cyst.  Dr. B will change my medications, I won't have a bad reaction to them, and things will look up.  I have irrational fears and they will not come true.  These are all things I must say to myself.    It's going to be OK.  I have to say it because ... who will?

I just thought of something.  I'll be 35 in 22 minutes.  It's kind of like the warranty on my life.  35 years, so many thousand miles ... things are starting to break!!!

At least that made me smile!!!