Monday, December 30, 2013

I'm worth more than this.

Recently, I've been coming more to grips with what is going on with me and ... I realize that I'm more important than I have been treated.  Sure, you want to come to work and cough your germs all over the place ... because you're in your selfish bubble and don't realize that I actually have health problems that could be adversely affected by you.  I know you don't know this because you are too caught up in reminding everyone about yours ... which sorry ... mine are life threatening in nature so I should be talking about them instead of having to listen to yours.

Perhaps, I should become a total bitch about it.  Perhaps I should remind people what risk factors there are to me getting a bad chest cold, or a flu.  Nothing bad could happen or ... something terrible could happen.  My body won't fight infection the way yours does.  So, if I get one, it would mean something different to me than it would to you.  I wouldn't come in here with anything awful and I expect you to give me the same level of respect. 

Of course, those people that are reading this are not the YOU that this is referencing.  It's just me wishing I could say all these things to these people without it becoming some huge harassment.    Yes, that is the world I live in, standing up for myself could get me in trouble ... doesn't seem right, but ... that's how it is. 

Anyway, I've started to cut back a little on my hours.  Yes, I have.  I will NOT be working past 9 PM on Fridays or Saturdays because the environment in my place of employment is not a healthy one.  Absolutely not.  It stresses me out and I just don't need any extra stress.  So ... I've dumped all my hours past 1am.  And ... I may be swapping a couple days a week with a dayshifter so that I may have 5 days of regular sleep and only 2 days of nights. I am immensely excited about this prospect!!!!!!!

I am worth more than what I am right now.  I'm worth more than just being a doormat for people.  I'm worth more than just being a person filling a position in a job.  I am a person with dreams and aspirations, I have a life outside of here that I miss when I am here.  I have SO much going on in my head, a constant battle about my health and money and all this. 

I am going to stick to my guns on my new rules.  I've posted the couple 03-05am shifts that I picked up for some reason.  I can't do that and I know it.  So ... hopefully someone will take them because I absolutely cannot work that late.  I can't. 

My disease is not getting any better.  I don't mention it to people, I really try not to talk about it because no one wants to hear it.  But, it's true.  I've been feeling worse every day but I keep a smile plastered on my face and try to keep moving.  I don't want to bother anyone with it. I don't want to annoy people about it but .. it's true. 

I'm sick.  I feel dizzy and off and nauseous EVERY day.  I smile and laugh to cover up the fact that I wish I was at home curled up on the couch.  I'm miserable on the inside but I don't need to bother everyone with it so I keep it hidden.

Yes, I look and act like everything is good.  I don't want to be a whiner.  But, please don't even think to utter those horrible words "You look like you feel better" ... because you have NO idea what I go through every day.

I'm putting myself first from here on out.  With my husband, with my friends, with my co-workers.  I come first.  I am living in this body.  I am in control. 

I'm worth more than how I have been treated.  It's time to take charge.

Thursday, December 26, 2013

What's Important

Have you ever taken a moment to stop and prioritize things in your life?  I'm not talking about the BIG things like children, mortgages, spouses, etc.  I'm talking those itty bitty things in life that we often overlook as just something that happens.  For example:  eating, drinking, sleeping, breathing, thinking, dreaming, believing.  Those are tiny, involuntary actions that our body just DOES.  We don't have to walk through life saying "Breathe in, breathe out," "chew, chew, chew some more, swallow ... oops, keep chewing" "one foot in front of the other, up down, left right"  These things just happen for us.  Which is good, because with how forgetful people are ... some may forget that they were supposed to be breathing and ... poof, they are gone.

I've been put in a position where I have to actually put an emphasis on some of those little things.  Let's just talk about the major one for a moment. 

SLEEP.

Everyone does it.  Most of us don't do it as much as we should.  Myself included. I used to just get a few hours of sleep and would think I was doing just fine.  Sure, I'd be tired but it was OK.  I could keep going.  As I got older, the few hours didn't work so much.  But now, I'm hovering near 6 and my mind wakes me up wanting to get up and do things.  HA!  Stupid brain, I am not physically capable yet of doing the things the brain thinks I should be up and doing.  Still, my brain hasn't quite gotten with the program that sleep is MORE important than working out.

I hear all the gasps and protests for all the fitness obsessed friends out there.  Yes, people.  Sleep is MORE important.  If you don't sleep, you're not doing your body ANY good when you work out.  Don't believe me?  Google it!

Sleep recharges the major organs in your body.  A lack of sleep can actually kill you.  It can cause major heart issues.  Sleep.  It's how our bodies fight infection and for me ... infection is the boogeyman that can steal away my life right out from underneath my nose.  Hence the extreme anger over the sickies coming to work.  It's a cold for you, it could be a lung infection for me.  AHH!  Anyway, ... sleep saves.  Sleep repairs. 

This is my new #1 priority.  I need to make sure I am getting 8 hours.  I get off work at 1am.  I'm in bed about 0130.  I need to not wake up til 0930.  Somehow, I have to make this happen.  I haven't figured out how to shut off my brain yet.  My body is screaming at me daily that I need more sleep. 

I need more sleep.  I need more deep breathing.  I need less stress and more peace.  I will make these things happen for me.  I suggest everyone do this.  There's a lot of people around me who could use a few deep breaths, a glance at the bigger picture of life, and how quickly everything can change. 

Don't take a moment for granted because you could end up like me, sidelined, being reminded daily that I am not as good as everyone else because I can't do them.  Being told there are "no excuses" when I am also being told by a doctor who's opinion is more important than a regular person  Doc says no.  You can think there's "no excuse" all you want.  I'll take my health over an obsession.

Being alive and healthy is important.   I'd like to stay on this side of the ground, thanks. 

Sunday, December 22, 2013

Does it leave a mark?

** Warning:  I may or may not be whiny and emotional **

I just finished reading a book that had many zingers that hit too close to home for me.  The book was titled "The Fault in Our Stars".  The main character is a young girl in remission from thyroid cancer.  The other characters are either afflicted with cancer or their family.  It's all very close to home.   I am, after all, in remission from cancer. 

I have that other blasted disease that is being treated but ... is a sleeping dragon that could wake up, rain fire down upon my life and extract me from the world.  This could happen, it could not.  Life is a HUGE unknown for me.  I know, it's unknown to everyone but, there is a higher probability that the worst is more likely .... for me. 

Anyway, the book ... the book ends talking about the impact someone's life makes on the world.  Everyone wants to leave a mark.  Everyone wants to make changes and be this inspiring thing.  But, few of us are.  In fact, I know I'm not. 

I do not mean, in any way, to be self deprecating or to feel sorry for myself.  It's just, ... I'm kind of a background piece.  I'm a face in the crowd, I'm a peg filling a spot.  The hard truth is, if I walked out the door right now ... and never came back, the loss wouldn't be that substantial.   I don't have that much of an impact in any life.

I don't have children.  I don't have a whole lot of friends.  I don't have a huge family.  I probably couldn't even fill a few rows of seats for my own funeral.  It's just the truth.  I'm not beautiful.   I don't stand out in any way shape or form.  I am more of a doormat, someone that can be used to achieve some other sort of goal. 

Maybe that would be the impact losing me would have ... people would not have me to use?  No.  I'm not "being used".  I don't know.  Sometimes, I feel like suddenly I've become rather opague, people can see right through me. 

I've been thinking a lot about the potential end of my life.  Not that I am exactly in any great danger right this moment.  However, I come to work with an immune system that has presently been shut off.  I thought I made this abundantly clear to those around me.  Alas, I have not.

I cannot explain the anger that runs through me when I hear someone sniffling or coughing and then say "It's just a cold, I don't need to stay home"  or ... this one was a killer.  "I think I have the flu now" and they didn't go home.  No.  They stayed in here, in this recycled air room ... near me. 

I don't wave my disease around like a banner, but perhaps I should.  WTF! Is it not clear?  Someone with my condition, in remission, DIED because they caught an illness from someone.  This is the extreme worse case scenario.  But, it's always in my peripheral.  I CAN'T just casually get the flu or a cold.  I can't just laugh it off like nothing. 

I can't even change my effin' cat box because of what's going on in my body.  I can't just go shopping and touch things and then rub my eyes.  Nope.  Wash my hands, rub Purell on them.  People may be germaphobes out there but they aren't trying to save their life. 

People coming in here sick really makes me feel like I mean nothing.  I explained what was wrong with me and ... people ignored it. 

I have to listen day in and day out to everyone's problems, every day.  But, no one ever seems to notice mine.  No one notices that I CAN'T do things that they can.  I am on restriction from EVERYTHING because I am NOT GETTING BETTER!

Thankfully, I'm not getting worse, but I am definitely not getting better.  I'd give absolutely anything to have the sort of normal-ish existence that other people have.  I really would.  I would give anything to only have to push through being tired to get up and do things.  I would give anything to be able to look ahead towards the future and think that it might happen. 

Instead, I feel like I am looking forward at a dark hole ... the end of the line ... to nothing.  I don't want to be this whiny, crybaby, who is sick, poor me, wah wah wah ... but, I DON'T WANT TO DIE! I don't want to leave the world, I don't want to be done.  I don't want the lights to go out and everything be over.

I don't want the disappear.  I don't want to be forgotten. 

My life, it won't leave a mark.  Not even a blip on the radar.  

It doesn't mean I'm ready to go. 

Saturday, December 7, 2013

Hold On To That Feeling

I wish I could hold onto the feeling I get when something tragic happens, or when I am reminded of those who are less fortunate than I am.  Everything in my worlds seems a little less dark.  I acknowledge what I DO have, instead of focusing on what I don't. 

Recently, there was a very public traffic accident involving the actor, Paul Walker.  It was sad because he wasn't one of those drinking, drug using partying celebrities where you know it is only a matter of time before they are in the headlines as "recently deceased".  Nope, you really only saw him on the Red Carpet, or in the movies.  At least, he didn't stand out to me in the tabloid magazines.   Anyway, turns out, he was incredibly philanthropic, a wonderful father and stand out guy.  Everyone always sings the praises of people who die but this time ... there were events to back it up. 

When someone dies so tragically like that, so suddenly, it always makes me take pause.  It could happen to anyone at any time.  I get so fixated on the ticking time bomb of my own health that I forget all about how I could end up in a crumpled tangle of metal  on my way home tonight. 

But, it's not just people dying that makes me take stock of my life.  It's also those that are going through hard times in this happiest time of the year. 

Every year, our dept put up an Angel Tree downstairs with people/children who need/want things for Christmas.  I always take one and usually do one of the hearts from the volunteer place.  I got my angel and my heart, and will be contributing to the "adopt a family" that we do every year as well.  I am glad that I am in a position to help people during the holidays.   Alas, I am not immune to the pain I get in my heart when I read some of them.

One of my friends posted their heart on facebook.  They have a 13yr old boy and all he asked for was a warm sweater and a gift card for food.  And that ... is where my heart broke. 

We are having a bit of a cold snap here in Northern California.  Colder than usual temperatures.  We just finished updating the heating in our house ... that we own.  This means all the more to me now as I sit and think about those struggling to find warmth while living on the streets, struggling to keep their children warm.  My heart aches for those who are trying to provide something of a holiday where there is just no money.

I have seen these Angels and Hearts with people asking for an iPad or an iPhone, A PS4 or Xbox.  Ok, yea ... this isn't the Beverly Hills Giving Tree!!  Then, next to those are the hearts from elderly folks just looking for dog treats, warm gloves, a robe, a stuffed toy, some legos.  It kills me.  The simplest of things ... mean so very much. 

I love giving at Christmas time.  So ... even though I had the idea that I only want to buy for the kids in the family this year because we are a little over budget in places ... I made a list and bought a little something for everyone in the family. 

OK, not EVERYONE but ... my brothers, their girlfriends, stepmom, dan's mom and siblings, etc.  It's not as long a list as it looks.  And, I just got them little things, just tokens of my love.  It gives me a good feeling to do things for people.  And, I am excited as heck to wrap up the gifts for people.  I am excited to give things ... and I don't want anything for myself.

There are people out there in this world who would kill for the luxuries that I have.  There are people who would sacrifice everything just to be able to do what I can do.  So what if my bills climb, I have the money to pay them.  I can't take it with me when I die ... so I am enjoying it now.

I need to hold onto this, hold onto how I appreciate everything right this moment.  I don't want to get back to being that selfish, whiny, cry baby about everything in life.  Others have it worse.  There will always be someone who has it worse.  In hindsight, even with everything going on ... I have it good.  I am overweight because my drugs made me hungry and I had enough money to get food to eat to make me look this way.  I have a house that I can curl up on the couch and not exercise. 

I have a new car.   We have a newer truck.  My husband has his work truck.  I have a HOUSE!  What in the world do I have to complain about when there are people out there who would set aside their own desires to get treats to give to their dog because they can't afford it?  I look into the face of my dog ... the spoiled rotten lil puppy that he is ... and I would be devastated if I couldn't provide for him. 

I don't know.  The world is a cruel place.  I am lucky to be in my life, as hard as it may seem at times.  I am thankful for what I do have, for the people in my world. 

It's the most wonderful time of the year for me ... and I am bound to make it that way for others.



Monday, December 2, 2013

It's not easy to be me.

Remember that Five for Fighting song, "Superman"?  Sometimes I feel like that is the soundtrack to my life.  At least the chorus "It's not easy ... to be ... me"  because it's not.  Granted, who ever says it's easy to be them, right?  Even rich celebrities say their lives suck. 

Anyway, it's not easy to fight this battle I'm in.  It's not easy to feel like you're walking miles behind the rest of the world in the great rat race of life.  Some people are running, and I can't even pick up the pace to attempt a jog!

Injection days are the worst.  I would give my right arm to be able to just crawl into my sweats and curl up on the bed all day on injection days.  I don't want to have to go out into the world and do anything.  Alas, that's not the case.  I usually have to work or ... I have to do something.  I wish things were different.  You have no idea.

I am desperately trying to get on the healthy living horse again.  Being such a slug is making it a difficult transition but not for lack of trying.  It makes me mad about being sick.  It makes me mad at the world.  It makes me mad at people around me.  It makes me sensitive to comments.  It just makes me a generally unhappy person.

I shouldn't let it, but it does.  I am exhausted from constantly fighting this monster.  I am exhausted from constantly trying to live my normal life. 

I am reminded often that I am lucky to be above ground.  I am reminded that there are people who are worse off than I am.  It doesn't make the anger magically disappear however ... but it is a start. 

It's just not easy. 

And when things feel like they are starting to get worse ... like the scab reappearing in my nose, the new wheeze I have when I breathe out, the hip pains, the cough that is like the worse tenant in the world. ... those things make me even more overwhelmed because that's where the fear comes in.

there's always a fear.

Am I going to get worse?  Am I going to die?

The nightmares have returned.  Nightmares that I am actually dying and I freak out, trying to anchor myself and hold onto living.  I scare my husband because I cry out, screaming to hold onto me so that I don't slip away.  I've never had such horrific nightmares.  It's not like a monster is coming after me, no ... it's that my life is ending.  It's that everything is soon going to go dark. 

Even thinking about them is freaking me out. 

I don't want to die.  I admit it.  I'm scared.  I'm not in danger of that right now, but no one knows what's up ahead and for me?  It feels like that is lingering around the corner at any given time.

I can't help it. 

Monday, November 25, 2013

Adult Decisions, Adult Regrets?

One of my favorite things about being a grown up, is that I can make decisions for myself.  I don't have to get permission (although having the husband on board with said decisions helps) and I can decide to do things whenever the hell I feel like it.  At least there is some perk to this endless battle of responsibilities, right?

So ... I haven't exactly done anything for myself recently.  I don't count having my hair done.  Because I can just not do that.  Honestly, the hair doesn't help make this package look any better.  Anyway, everyone kept saying I needed to get away, go on a trip, do something nice for myself.  Alas, that never really happened.  So, I was thinking, and reading, and researching and I decided what I wanted to do.  So ... I did.

I decided I wanted to do something about my gas mileage.  I bought my 4-runner when children were still a possibility.  Right now, I have to think that they arent', because I can't plan for them.  I don't know what the future holds for my health.  I need to start living in the moment.  So, I decided to shop for a car that got better gas mileage.  I don't need an SUV.  It's usually just me and Loki in the vehicle anyway. 

I decided WHAT kind of car I wanted, and what year range.  I decided I wanted to go shopping this weekend.  I headed to the dealership to see if they had any 2010-2012 Acura TSXs. 

What did I get?

A 2014 Acura TSX.  Yes, I fell in LOVE with the brand new ones but I didn't even entertain the idea because I knew I couldn't afford a brand new one. 

However, I could afford to lease one.  Why would I lease a car?  Well, if you know me at all, you know that I start getting antsy for something different car-wise every couple of years.  It's a HORRIBLE habit, but what made it worse is that I would want to BUY a new car every few years.  So ... I did.

Since turning 20 I've had:

2000 Honda Civic SI (brand new)
1998 Ford Expedition
2003 Ford F250 (new)
2004 BMW 325i (brand new)
2005 Acura TL
2007 Toyota 4-Runner

So, I haven't bought a brand new car in almost 10 years.  I've been getting used ones, and because I keep rolling them over, my payments have always been pretty crappy. 

Now, I have a brand spanking new car.  I got behind the wheel of it last night and it had only 71 miles on it.  It smells like a wonderful new car and I am over the moon.

Now.

On the night of the purchase, I couldn't bring it home because it wasn't there.  I had to come home in a loaner while they tried to get it from another dealership.  I was very ... uneasy.  I felt like I chose wrong.  I felt like I shouldn't have done it.  But, that's the adult in me trying to talk myself out of it. 

Once I had the keys in my hand, once I got behind the wheel and drove my pretty car out on the roadway ... all those regrets faded away. 

This is for me.  This is what I did for myself.  I deal with sooooo much crap, people talking about how great they are, people screaming at me on the phone.  Being sick, cancer, trying to live my life with a life altering illness ... I deserved to do something for myself.

And I did. 

Monday, November 18, 2013

Nerd Alert

I'll admit it.  I'm a nerd.  Not like a smart nerd, no pocket protector wearing, broken taped up glasses, pants that are too short stereo-typical nerd.  I'm a book nerd.  I love to read.  I enjoy reading so very much.  I love it. 

My dream would be to have a library in my house.  A room of books.  I only keep the books I would read again.  If I don't see myself wanting to read something again, it gets donated, or brought to work to put on our shelf here.  If I want it, I'll place it on my bookshelf.  There are some books I've read on my kindle, or borrowed someone's book and then marched out and bought a hard copy for myself.

Yes, I have certain books archived on my Kindle.  However, I want the book on my shelf.  I want to keep the Kindle space clear for books.  I LOVE books. 

Currently, I'm reading "A Song of Ice and Fire" series by George R. R. Martin.  You may know it as the Game of Thrones television show on HBO.  These are the books that was based off of.  Now, I read the first book before watching the 1st season, same with the second.  There are some minor changes, some tweaks to make it a season's worth of TV. The seasons would be very long if it followed the book.  I tried very hard to stop at the end of book two and not read ahead.

I can't help it.

It's my escape right now.  I drift off to a world with castles, kings, queens and dragons!!! I'm so tired of the Fairy Tale Princess story.  I love them, don't get me wrong, but this is a more accurate depiction of life back in those days.  

The books are just incredible.  I'm glad to know that the author is working on book 6 because I don't know what I will do when I get to the end of Book 5 and there isn't anoterh book to dive into.  Sure, I'll read something else but ... I'll be desperately waiting to get back into the fictional world of Westoros!!

I purchased the 5 books on my Kindle but, I will be purchasing the actual books to put on my trusty bookshelf.  I think I'd like to purchase the seasons on DVD too.  

Oh ... and my other total nerd-isms .... DOCTOR WHO!!!!!!!!  Ahhh, it's the 50th Anniversary of the start of Doctor Who.  There is a special on Saturday called The Day of the Doctor.  I went in and made sure it was recording.  I also noticed that all week on BBC it's like a Doctor Who extravaganza.  I am so excited.  If I ever need something to watch I can clip on BBC and be whisked away to another fantasy land. 

I'm not a big fan of real life at the moment so my nerdy fantasy-lands are the greatest place for me to be.  Real life just sucks sometimes.  Not completely, but it sucks. 

OK, I have to go back to being a nerd now.

Friday, November 15, 2013

And .... I am back.

Man, I let writing this every day really fall by the wayside.  Not even once a week?  Sheesh.  It isn't like I've been doing much of anything else that is keeping me from doing this.  I sit at a computer for ten plus hours a day, surely I can pound something out on the keyboard.  I even reworked my book idea and gave that a stab and was heavily motivated on that for like ... two days.    You can probably guess from that amount of work that it's not finished.  No, not even close. 

What is it that has me so blocked?  Besides the obvious. 

My guess?  The raging depression that's taken ahold of me, shutting down everything that I enjoy.  Except reading, I like reading.  Reading provides an escape.  It helps that I'm currently reading an amazing series.  "A Song of Ice and Fire" by George R.R. Martin.  You may also know it as the books that inspired the "Game of Thrones" series on HBO.   They are great books.  I love castles, dragons, kings and queens.  It's like I slip away to this wonderful fantasyland .... full of death and destruction.  Not that I fantasize about those things ... its' just what happens in the books.

I also have stayed away from writing here because I didn't want it to be a "woe is me" situation in every entry.  And, sadly, every day I can think of a woe is me scenario to gripe about.  It happens.  I'm a little fed up and mad with the world on just about everything at the moment.  I've never gotten as angry and annoyed at things as I do right now.  I find fault in everything and I'm realizing how many negative, toxic influences I have around me.  Their negativity is feeding mine and it's slowly drowning me.

It starts with constantly being reminded of my size/shape.  I'm not a pretty girl to begin with and now, I'm losing my hair and I weigh more than I ever have.  Honestly, do you think your comments are helping?  Give me a break for once ... I'm struggling with more than you could possibly wrap your mind around!

Then, after struggling with the outward appearance, there's the desire in my heart to make it look better.  After all, I'd be more accepted and welcomed if I wasn't looking like this right?  Well, I'd LOVE to ... but, my body runs the show right now.  Even when my brain and heart are like PLEASE, sometimes the old machine won't go.  And, I can't make it go.  As much as some people say I can ... NO.  I can't.  You don't have a single clue what this is like.  I can't. I want to.  Desperately want to, but when my lungs are tight, full of crap, wheezy, and the energy levels are gone?  No. It's not going to happen.   And, please, don't tell me you know what it's like to need to push yourself to get out of bed.  I would have thought the same thing myself only a short while ago.  I would have said "Oh I know how that is, but I just have to power through".  Well, now I know firsthand that I can't. 

There's a well written theory floating about.  It's called "Spoon Theory".  Why they chose spoons, I'll never know.  Basically, the premise is, you have a handful of spoons to use everyday, and every time you do a task whether it be showering, brushing your teeth, making your lunch, doing laundry, driving to work, working, etc.  Each and EVERY task, uses a spoon.   Some days, you have a whole dinner party worth of spoons.  Other days, you have 3 spoons.  What it means is ... each task uses up a spoon so.... if I did something that would be a two-three spooner, like working out (because when I do go, I work out HARD) ... I need to have those extra 2-3 spoons of energy to use.  If that doesn't exist?  I can't sacrifice other things like ... oh ... say ... MY JOB.  The job provides the money, the medical insurance, etc.  It does come before making this hideous body look better right now.

The idea of children pops up time and again.  Some cute lil nugget smiles at me, I hear stories of my friend's beautiful children, see their pictures on facebook and ... wow, there's a sharp pain through my heart that I'd never experienced before.  A few years ago, my husband and I talked about children and we said we'd LOVE to own our home before having them, it wasn't a requirement but it would be nice.  Well, not only did my husbands job get better, we have our home now.  A home that we could live in forever.  And ... now I can't have kids.  It's kind of messed up.    I know I'm only 33 (for now ... 34 is fast approaching) but I won't be able to even consider having my own children for two years.  That' puts me at almost 36.  Not that I'll be too old, it just will be harder.  And ... there is no guarantee that I will be allowed to even try at that point.  There's no guarantee that I'll be off my medications.

I have always considered adoption but, my husband won't even address that topic until my disease is under control.   I see his point.  It doesn't  mean I feel any happier about the situation.

Basically, I feel like I'm a caged animal at the moment.  I'm not allowed to really and truly LIVE.  I can't do the mud runs I came to love so much last year.  I gained all the weight I lost and some more for good measure.  I have to jam a needle in my stomach every week and feel blah ALL the time. 

I see why I am depressed.  I'm a passenger in my life, I'm not driving.  I have no control.  Life is flying by me now that I'm in my thirties.  I feel like it was only yesterday that I was still in my twenties and felt like my entire life was ahead of me.  I don't feel that way anymore.  I've made comments about not knowing if I would be here in so many years and people scoff at me.  Well, you aren't living with an incurable, life threatening illness with a mind of it's own.  Your entire world hasn't been spun around and now you have words like "incurable" "autoimmune" "chemo" "injection" "Pr-3/ANCA" "ALT" "Saddle nose" "CRP" "ESR" "hemoptysis" "lung function" "nasal rinse" "prednisone" "Zoloft" "PET Scan" "cavitary lesions".  You don't have to watch your pee.  I feel like I'm 80 when I'm not even to mid-life yet. 

I just want to feel like I did just about two years ago.  I just want to go back to how things used to be.  I really do ....


Tuesday, October 8, 2013

Brushing off the cobwebs

Hi!  Remember me?  I can't believe it's been so long since I wrote.  No, that's a lie.  I know how long it has been.  I'm aware I haven't written.  Every time I stopped to think that I wanted to come here and write something, I stopped myself.  What would I say?  What could I possibly write? 

  • I still feel like shite
  • I'm still miserable on nightshift
Unfortunately, I have nothing really going on in my life other than work, and trying to manage this godforsaken illness.  There's so much weighing on my mind that I feel like I am now fighting a constant battle against depression. 

Winter is coming. 

No, this isn't a reference to Game of Thrones, although I LOVE that show and the books.  No, it's a reference to life in general.  Winter IS coming.  It's already almost mid-October for crying out loud.  Winter for a construction worker's family potentially means no work.  No work for hubby means wifey works more to make up the difference.  This winter we have a HUGE house payment to make which tightens that noose around my neck a little more.   However, I have this tiny speck of hope that they are going to keep Dan working through the winter months.

In any case, I have been working a lot lately.  I know this upsets those around me but, I don't really feel like there is much choice in this matter.  I desperately need to pay down bills before the winter comes.  I need that financial burden on my shoulders to be lighter.  It has to be lighter!!! I've talked with my husband several times about needing to hunker down and budget our money ... and soon I'm going to start screaming it.

Here's where it's going to get crappy if you want to click away.  I hate everything right now.  I hate me.  I hate my body.  I can't stand the sight of myself, which means I think everyone finds me repulsive.  I feel like I should be hidden away somewhere, under a rock or something.  I remember last year when I was told that someone was concerned w/ my weight and it clicked and I was hellbent on losing ... only to get sick and balloon up.  So you can imagine how I feel I am no longer worthy, that I should just step aside so that they no longer have to deal with me.  I know these are my feelings, but I feel like a tremendous embarrassment to my husband.  I don't want to embarrass him.  I don't want him to be ashamed of his whale of a wife.  I'm ashamed of me.  I have all these dresses that I want to wear but even now, I feel like I don't want to expose everyone to my plaster white legs that are swollen and gross and ... horrible.  Everything is seriously horrible.

There's that crap.  I am sick of being sick.  I'm sick of it!  Everyday I hope that I will feel NORMAL.  And, everyday I don't.  Even on days that start off OK, by the end of the day I want to go to bed and never get back up.  I get dizzy, the world feels off kilter, my nose bleeds, my lungs feel tight, my throat feels like it's closing, I cough and expect a lung to come flying out any moment, I have to look at my pee, I have to think about each and every tiny twinges of pain.  I have to stay away from people, back out of doing fun things, miss working out and .... the newest part of my life ... jamming needles into myself every week. 

Oh yea ... my medication was not working.  So, I switched over to injection style medicines.  Injections that I have to give to myself.  I could have Dan do it but I just muscled up and learned to do it myself.  I have at least 100 needles in my house but only 6 doses of the meds so I'll be visitng Kaiser a lot for that.  Oh, and a small funny anecdote for you.  I placed my needle in my sharps container along with the vial o' meds because it is chemotherapy and cannot be disposed of regularly.  When I saw how big the opening was in the container, I worried that the cat would knock it over and spill out the needle and meds.  So I put the lid on it.

Well ...

Once the lid goes on, it doesn't come off.  It creates this permanent seal ... so ... now I have a sharps container to turn in with all of 1 needle in it. 

I feel stupid.  I laughed, and then wanted to slam it against the wall and scream.  I have to go get another one.  Nice.  At least they weren't too expensive!!!!

Ah, life.  It's just such a pain in the rump sometimes. Especially right now.  I don't have the money to get out of town ... but I depserately want to.  I don't have the time to get out of town but I depserately want to.

And ... I feel a shift bid is in our future and dayshift won't be on it.  So, I'm stuck here on nights when I desperately want off of them for a variety of reasons.  Most of which is I am exhausted and feel worse at night.  I would much rather be at home in my comfy clothes while feeling like this.  But, that's just not in the cards for me.  The needs of the higher ups outweigh the needs of me.  It's how the cookie crumbles. 

So, to sum up this long rambly message.  I'm a sad puppy.  I really really feel sad.  Everything makes me sad.  I can't even hold onto the things that are good in my life.  I'm just so unbelievably sad.  I wear a mask with a smiley face on it every single day ...

It has to get better soon.


 

Friday, September 20, 2013

Love what you do

"and you'll never work a day in your life"

While I can't always say that is true, today ... it definitely is.  Physically, I felt a little off.  It was a combination of a lack of sleep, Boris the monster wreaking havoc inside my body, and just a sadness that my lil puppy was going to be at daycare for the weekend since Dan is diving with friends, I work, etc.  I like coming home and getting puppy kisses so it made me sad.  Anyway, I was "off" on my way in. 

It was a good crew of people I was working with, so I began to perk up.  Despite my sour feeling, I was in a good mood so I wouldn't be poopy.  We laughed, we joked, we took calls, we discussed the full moon.  And then, I moved to the main radio channel.

While I don't really talk about my job, and I still won't even in this entry, it was a great time.  I love to be busy, I love to do things that I have trained to do.   I like to juggle a lot of things, I like the craziness that most people dread.  And, I got handed a LOT of it. 

I think I did OK.  I felt confident.  Amazingly, in m y work, on slow nights I feel like I am not as good at what I do.  But, give me a night like today and I feel like I am on top of my game.  I feel like I hear things correctly, and do all that I am supposed to.  I come alive.  This is what I love to do.  This is why I am in this line of work.  This is why I love my job.

Yes, today was a full overtime day for me.  I was being paid extra to be here.  But, I didn't feel like I was working.  I was having fun. 

Today reminds me of the great things in my life.  There's some crappy stuff.  There's things I wish I could change but you know what?  For the most part, I am a very lucky girl. IIn fact, I was thinking about something after finishing one of the exhilerating parts of my job.  As a kid, I remember hearing the police scanner chattering away whenever the helicopter was flying around the 'hood. 

Now ... that voice is me on that scanner. 

I don't know.  It just kind of went full circle for me.  I wanted to be in public safety when I was a kid.  I wanted to be a part of all that hooplah.  I figured I would be out in it in a different capacity but ... here I am ... the middle of the hooplah.  The voice telling everyone where to go, what to do, what to look for. 

And I love it.  I'm a damned lucky girl. 

Wednesday, September 18, 2013

Good, Bad, Up, Down, Back, Forth, Normal, Wrong

...those are the days of my life.

Everything seemed to be getting "better".  I mean, not 100% but, I was feeling like I could move around a little bit more, like I could get more done.  I went and had my labwork done, thinking I would be marked off by the doc to not have to go back and have them done again anytime soon.  And I was ... no more bi-weekly runs over to the Kaiser lab.

But, then everything changed.  My nose is once again in complete agony.  It's either running like a leaky faucet, or it's so crusted up insde I can't touch it or move.  Yesterday, it decided to spring a bloody leak, twice.  And ... all down the front of my sweatshirt because I didn't get to the tissue in time.  Nice, huh?  Brianne, I hope you aren't reading this. 

I keep getting sharp, shooting pains behind my eyes and now, it feels like there is a cold compress on my spine between my shoulder blades.  That same area is also tingling.  It's the weirdest thing.  It happened in my arm too, but mostly my back.  I am not slouching or hunched over.  

I've emailed my rheumatologist to see if I should go back and see my ENT, or my PCP.  The last time I saw the ENT I had no diagnosis and he kept saying "it's just dry".  However, how can you say it's always dry when it's running at the same time?  Literally, right now it's all crusted up but there is a river running through it. How can you say that is dry?  And my cheeks hurt ... they ache ... and sometimes tingle. 

I don't know.  I thought good days were going to be here for awhile.  I made plans to get back into a more active routine, adding on to what I was doing right now.  I don't want to go backwards!

I want to go home, crawl in bed and pull the covers up over my head.  However, here I sit, at work, trying so hard to be normal.  I'm smiling, I'm trying to make jokes.  Because, that's the way it has to be.  

 

Friday, September 13, 2013

One question: Why?

I'm struggling today.  I'm struggling with keeping my mask of "normalcy" on.  I'm trying to smile and laugh but the moment no one is looking I am blinking away tears.  For the men that may be reading, NO it's not PMS.  It's my carefully laid facade cracking because it's SO hard to keep it in place. 

So many things are knocking around inside my head, vying for position of which is the most important worry/stressor that I have.  There's the usual:  money, bills, etc.  Then, there's my own unique set of worries: Cancer remission, lifelong-life threatening illness, disability, not being able to work enough to make the bills, being out of work, being out of work forever, getting sick, dying, not being able to be a mommy, not being around to see my brothers have children, to see my husband as an old man. 

I think I could go on and on and on about that last part.  There is so much that comes with this diagnosis.  It's on my mind 24/7 and those people that say "Just don't think about it" don't understand.  I can't just not think about it.  It's part of everything that I do.  Wash my hands more than normal, Purell, wipe things down, contemplate whether I have to pee bad enough to go into the public bathroom.    Is this cough getting worse?  Is this new congestion?  Why was there blood in the sink when I coughed?

I'm sad.  I waited.  I didn't want to have kids when I was married first.  I didn't want to have kids with my husband.  It was more that I wasn't feeling a life of him ... not that I didn't want kids.  When I started all over, I knew there was a possibility I wouldn't find someone and I'd never have kids.  Now, I have someone, I love my husband.  I want them ... and then this disease took that from me. 

Adoption is my only option at this point.  I have no problem with this option as there are millions of children who need loving parents.  But, my husband had a valid point that I need to get to a healthy point of this disease before I could even sign on to be a parent to a child.   Being a parent means giving up yourself.  Your needs are no longer important and unfortunately, right now ... I have to put my needs before anything.  I don't want to die.  I don't.  I'm adamant about that.  I need to stay healthy. 

So, at this point, I don't know if that's going to be something I achieve.  Motherhood.  I listen to all the cute stories of people's kids, I see their pictures and it pierces my heart because I don't know what's ahead for me.  I don't know if I will get to be a part of that club.  And, everyday ... I get older, and the dream seems to fade a little more.  That breaks my heart. 

I also know I need to overcome my intense fear of flying.  I need to let it go.  I mean, if I'm meant to die in a plane crash it's gonna happen, right?  Because that is my only fear of it.  I don't want to crash.  I've never been on a damn plane.  I fear that there will be turbulence and I will have a complete breakdown.  But, I want to do so many things, I want to travel and see places.  Places I can't see without flying there.  I want to go to Hawaii, the Bahamas, Europe.  If I don't go to London, Ireland and Scotland before I die it will have been a wasted life. 

I don't want to be in this body, in this illness anymore.  I'm disgusted with what I see in the mirror, in what I know is my body.  I can't stand my face.  I truly and honestly feel like I am depriving my husband of something.  You may think I'm ridiculous but you aren't the one who gets uglier with time ... isn't that what every man loathes?  Imagine how it feels when that's what's happening to you ...

Why me?  What did I do to find myself in this position? I'm a good person.  I've lived a clean, good life.  Why did this happen?  What am I being punished for?  I wish I knew.  I wish I knew so I could atone for it and move back to my old life. 

Some of you may even think I'm not as bad off as others so what right do I have to be upset about this? Well ...  this is something I am going to have to deal with and face for the rest of my life.  I may be somewhat OK right now, but that could change and ... I could be worse off than others.  I don't know what is going to happen in the future.  I am at my body's beck and call now.  I don't have control, remember?   My life is no longer my own.  I am a slave to my bills, my mortgage and my disease. 

I'm sad.  I hate this.  I want to cry and I need a hug.

Tuesday, September 10, 2013

What doesn't kill you makes you stronger.

True Story.  However,  I don't want to be killed before I am feeling stronger!

My medication is a necessary evil.  Necessary because I'd love to start feeling normal but evil because whenever I take them I feel sick for two days.  Sicker than normal.  Not as sick as last week but definitely not the new normal I've been able to maintain.  Today is day 2 of the medication side effects.   It seems to be going in waves at the moment.  I'm feeling good ... and then I'm not.  And then I am feeling good again shortly afterwards. 

My nose is causing me absolute agony.  It's sooooo itchy, yet incredibly painful if I try to rub it.  It feels like it's drier than the Sahara Desert but, if I try to put my saline cream inside, it's not dry.  What the heck!!! I've always hated my nose.  I've hated the shape of it and how dang pointy it was.  Now, I just hate how it makes me feel all the time.  Stupid blasted nose.   *shakes fist*

Honestly, this past year and a half has really tried every part of my being.  It's pushed me mentally, it's drained my physically, it's twisted me up emotionally.  It's been up and down and loop-de-loops and flips and sudden drops and stops.  Where was the safety warning for my life?  If you have back problems, a heart condition, or may be pregnant, it is advised that you do not ride this life.  Well, I didn't have any of those things prior.

I need to get away.  Unfortunately, there's stuff that needs to be paid for, I just filed my taxes and that's gonna be a new monthly payment on top of all the others I have right now.  I am so stressed and stretched to my breaking point but ... if I take time off, it would only make that stress even bigger and stretch me even tighter.  See my conundrum?  I need to win the lottery or have a sudden windfall of money to relieve the street.  But, then again, doesn't everyone?  I don't know a singler person who says "No, I don't need any extra money, I'm fine."  Well, I know "of" people like that but I sure as heck don't know them personally. 

Anyway, like I was saying.  I need to get away.  I need to go somewhere peaceful, to sit in a chair overlooking the ocean, to gaze upon a quiet meadow or ... my favorite option, walk through the Happiest Place on Earth surrounded by things that remind me of my happiest times on earth, around my happiest things on earth, living my happiest dreams on earth.  I'm a Disney fanatic, I can't help it.  My parents created that monster with taking me there all the time.  It's where I feel them most.  I have so many memories of my family there.   I am happy there.  I don't think about work, about stuff that makes me angry, about stuff that stresses me out. I am truly at peace when I am there.  But, it's 8 hours away ... rooms are expensive and tickets are extremely expensive.  Not to mention food and souveniers.  Yea .. it's not gonna happen.  But, even other getaways are just not in the budget right now either.

Such is the life of a responsible adult.  I acknowledge that I can't have everything I want all the time.  There are duties and responsibilities that require my attention.  There are bills needing to be paid, there are chores to be done, there are many hours to be worked to get money to pay the aforementioned bills that need to be paid.  We need a fence to be built around the property so my lil dog cannot get out and get hit by a car.  We need to finish some of the electrical.  We need to put the floor and walls back up in the 3rd bedroom.  I need to stockpile monies in my savings account for the time when Dan is between projects and I am the sole provider of the family again.  There is just so much I need to do ... that overtakes the things that I WANT to do. 

What if I flare badly?  What if I am hospitalized?  What if I am put on leave? What happens then?  Who pays the bills then?  Honestly, this all better make me a stronger person.  Because I am going to explode with the stress that comes from having a chronic life threatening disease and all the bills that I have. 

Oh ... I really wish I could just get away for a day. 

Sunday, September 8, 2013

Go away heat, you're not welcome!

I am all for warm sunny weather.  I enjoy being outside.  I love looking around at how everything is lit by the sunshine.  I like the clear blue skies, I like the birds singing and the scent of flowers in the air.  I do.  I love all that sunshiney summer-ness. 

What I don't like?  Temperatures above 95 and especially above 100. 

I'm fat, people.  Yea, yea, I shouldn't say that about myself but it's the truth.  I am.  I've learned to accept this for the moment.  I'm fat.  Fat people don't like heat.  Why?  Because clothes that thin people wear are not pretty on people of my size.  Tank tops?  Oh hell no.  Have you seen my bat wings?  Shorty short shorts?  I think my ass would eat them and it just would not be a pretty sight.  I am able to stay cool with dresses but it's a fine line between cool dress and muu muu.  I've touched on this in another blog entry.  I'm also overweight and miserable so ... moving around sucks as it is, add a few thousand degrees of heat in the air and I'm beached. 

It's September!  I am ready for the briskness in the air. I am ready to feel the coolness starting to creep in, signaling that autumn is upon us and winter will soon be here.  Starbucks already has Pumpkin Spice Lattes (YIPPEEEEE) which would be so much better if I was sipping one wearing a sweater and not trying to stay cool in a lightweight summer dress.  No, I don't want it iced.  It's not the same ICED!!

I prefer to cuddle up in blankets instead of being under the thin top sheet.  I like the comforter on me.  I like to be tucked down in it and I cannot get my room cold enough to make that happen. Instead, it's hot and stifling even with the fan and I am under the top sheet trying to sleep. 

I'm just eager for fall/autumn.  I love that season.  It is my absolute FAVORITE.  I am ready for it to hurry up and get here.  This summer business is getting quite old.   However, that being sad.  My hubby's work usually slows down in the winter so I am NOT looking forward to that part of that time of the year.

This cold is clinging to me for dear life.  Just when I think I might be getting better, I get worse.  Perhaps, I shouldn't think and acknowledge these getting better feelings.  It's like my body catches on that I am aware of what's going on and it retaliates.   I up the dose of my immunosuppressant drugs tomorrow.  Now I get to swallow 8 pills at a time.  (Or in two small handfuls I guess).  I wonder what wonderful side effects I will have with the new dosage.  In two weeks I get to jump it up again.  I am hoping that there are bigger sized pills out there because I will run out quick everytime if I have to be popping 12 pills at a time.  I will need to get one of those giant prescription bottles.  I have to take these for two years ... I'm gonna need a few!!

The one thing that I've started to become concerned about is the side effect of hair loss.  It won't be total chemo hair loss but, it can be significant.  I will shave my head if I get a bald spot.  That's the only way I can get by without being completely self conscious about the balding.  I can wear hats, scarves, a cool funky wig! There are options to covering a bald head.  There's not many hairstyles I can manage myself to cover bald patches.  I've heard from some people who had some pretty severe patching.   The hair grew back thicker than ever, which also is  worrisome because my hair is pretty thick right now.  Oh well, the more the merrier I guess.  I had heard that it could come in curly too.  Well, if it's curlier than now that would be good because right now it's just naturally some sort of wavey curled mess.    Or, it could come in bone straight.  That would also make me happy.  I would love to have wash and go hair.  Let it dry, watch it dry straight.  No more flat iron and round brush!

See?  I'm getting better at finding a silver lining to this mess.  I will make the best of what comes.  The good part of gaining 50 lbs?  Shopping.  However, I am ready for the weight to come back off and to be able to wear jeans again without looking like a stuffed sausage casing is around my legs.  And, I don't want to look like one of those giant Costco muffins.    I will get cute hats to go with the cute hats I already have if I have to be bald.  I'll save money and get a super cool wig.  I might even get better hair afterwards, it will be all good.

As long as I don't die.  Because I don't want that.  Anything I have to deal with above ground just reminds me that I am not below it.  That's been on my mind recently with the death of a family friend.  It was a sudden, unnecessary death and it makes me think, as usual.  I don't want to leave earth.  In all the shitty, crappy things that go on around me and around the world, I am not ready to be done with it.  There is still good in this world, there is still life left to live. 

This horrible year is fast approaching it's end.  We are 8 days into September.  I do hope that it cools off ... that I start to feel better, and that things in the world generally get better.   I hope that everyone has been able to stay cool, or warm if you aren't in a hot place like I am.  I hope everyone had a wonderful weekend and is enjoying their Sunday.  Go 49ers!

I hope wherever you are in the world, you are smiling. 

Friday, September 6, 2013

It that which must not be named

I'm watching Harry Potter, hence the title.   While I've nicknamed my disease Boris, I also think it is That which must not be named. Or talked about? I'm still working on it. Usually, I've read about something and want to share it with ... Someone, anyone. But I still don't want to be THAT girl.

I've been sick the last few days. "Sick" meaning I have a bug. I know I'm always sick, I have an incurable disease. I caught a cold that seemed to invite the flu in to stay as well. My sinuses have been stuffed up, and I've had off and on fevers, chills, body aches and ... Yes, vomit. TMI? Probably. 

In any case, it sucks! I'd gotten used to feeling run over all the time, the lightheaded and dizziness, etc.. With having these bugs, I've felt much worse. I would like very much for it to go away.  I think I've managed to return my sinuses to their usual less than stellar condition.  I am not longer tossing my cookies but I have rediscovered the horrific cough it took me a very long time to stifle before.  Now I cough ALL the time again.

I would give anything to go back to how I felt last week. No, I'd give anything to go back to January 2012 and feel THAT way . Alas, that ain't happening. So, ill settle for how I normally feel.

In sad news, a very nice man that I knew a wee bit was found dead this week. I was caught off guard when I heard because he wasn't much older than me. It sucks to hear these things. It sucks that it had to happen. He was a good guy, a good friend to my family. I hope he is at peace. 

RIP Patrick.

Life is wholly unpredictable. I've said this many times.  I've written this many times. I am living proof of its unpredictable nature.  I hope every one takes a moment to be grateful for what they have, to acknowledge the small favors and little things that bring a smile to their face. 

I always say please, thank you and have a good day to people I pass or deal with. It amazes me how shocked people are to hear those words. Have we lost such simple courtesies like acknowledging other human beings? You never know what kind of day the other person is having. Just saying hello, offering a smile or wishing them a good day could be their only bright spot in their day. Don't deny them that tiny spark of hope. 

I hope each and every one of you have a wonderful night.

Monday, September 2, 2013

C'mon leaves, start a-fallin!

September and October are my favorite months of the year.  October eeks out the lead because of my favorite holiday of the  year, Halloween.  I love all the ghosties, ghoulies and monster decorations.  I love cemeteries and creepiness and Halloween just makes me happy.  So, the start of September makes me happy.  Time can slow down for these two months so I can enjoy it before November takes over and starts to get cold and yucky.
I do like the rain though.  I welcome the winter rain!

I haven't written in a few days.  I haven't even kept up on my happy photo challenge.  I'm gonna start over because I totally fell off the wagon.  I get so busy at home that I find myself remembering when I pull into the parking lot here at work and have just a wee bit of time to find something that makes me happy.  So I'll be starting all over again, trying to remind myself daily to look for things to make me happy.

I should stop looking at the Kaiser website.  I went there for some reason, I really can't remember why ... but saw that they had added yet another "Ongoing Health Condition" to my list.  I knew the radiologist who did my MRI last week mentioned a growth on the pituitary gland but I didn't think it was something that needed to be noted in my chart.

So now I have 5 things written there.  FIVE! 

Hyperthyroid (you couldn't tell by looking at me!)
Hashimoto's Thyroiditis (autoimmune disease of the thyroid)
Solitary Plasmacytoma (gone for now but still something to be constantly checked on)
Wegener's Granulomatosis (ah yes, the potential life ender!)

and the newbie:  Pituitary Adenoma

Thankfully, adenomas are mostly benign.  Alas, "mostly" doesn't mean they ignore it so ... there will be yet another series of uncomfortable MRIs in my future where they attempt to cram my giant fat behind into a tiny tube just to take pictures o' me brain.  Yes, it has been confirmed I have a brain.  There was something inside my skull smiling at the cameras.  Anyway, if it grows ... it has to come out, if it spreads, it's not benign.

All this translates to yet another tiny worrisome thing hanging out in the back of my mind all the time.  When I do think about it and get a lil tense, I remember what I've researched and all those "benign" comments.  Nevertheless, it's not fun to know that there is something growing where it shouldn't be.

Seriously, body of mine, why can't you just function like normal?  Why do you have to spontaneously grow things in odd places, allow cancer to invade and think that the parts I was born with are foreign agents?  It's like my body is a teenager going through an extremely rebellious stage.  I don't like it. 

Sometimes, I wonder what's next.  Honestly, every time I turn around it seems like something else has come up, is happening, is forming, is being investigated.  I am trying to achieve some sort of medicinal remission and feel somewhat human again but ... it keeps getting further and further away.

I have a series of days off coming up in a day and a half.  I plan on cooking dinner, picking up around the house, laundry, etc.  I don't plan on venturing far from my home, I will not be spending money on anything other than groceries and gas.  It will be absolutely fabulous to just be a homebody for a few days. 

I can't wait to go home tonight.  I'm starving and have no food.  I need to eat something before the absolute yuckiness of my meds kick in.  It's Monday!  I usually take my medications at 1100.  I was driving to work at 2:30 and realized that it was Monday and I hadn't taken them.  Dna brought them to me and I was able to get them taken right away.   Now I won't know when the lousy feelings will start to hit. 

I look out the window and still see summertime.  I can't wait for orange and yellow leaves, I can't wait to hear them crunching on the ground.  I can't wait for the bit of a bite in the air at night.  I can't wait for sweaters and jeans again.  I love fall.  I love autmn.  I love it!!!!!!!!

See?  I can't still find something wonderful about the world.

Wednesday, August 28, 2013

What I want and what I can do

... are now two different things.  This is the new reality.  I feel like I'm 110 years old having to say this, literally.  Anyway, not my point. 

I have a list of things I need to get done.  These are also things I greatly WANT to get done.  I want to go through all the boxes in the spare bedroom.  I don't want that room to look so much like a "catch all storagey" place.  So, I want to finish going through the boxes and shelving the books.  I want to box up all the books I've read and have no intention of reading again and donate them.  I want to get rid of all the stupid cookbooks I have because I never use them.  Not ALL of them but, the ones I purchased that I don't want.  You know what I mean.  I want to make up the files pertaining to "house stuff".  I want to get everything off this table in the living room and get rid of the stupid table, opening up that part of the living room.   I need to vacuum again, I need to swiffer again (these two things are a never ending battle).  I need to get a spray bottle and clean my stupid microfiber couch.  I have more laundry to finish. 

My brain just launches into telling myself that I need to go and do all these things as fast as possible with my time.  My brain still tells me if I get everything done now, I can have spare time afterwards to hang out and do whatever.  Except, my body doesn't get the memo.   I do these things, ignoring the signs that keep flashing at me to stop.  Then, I'm toast.  So, instead of enjoying my spare time with a nice walk or going out and doing something, I'm a zombie lying on the couch wishing that the world would go back to the way it was.

Welcome to the new normal.  I've heard this term tossed around in many forums, on facebook, twitter, etc.  This is my new normal.  I have to learn to pace myself.  I have to learn what I can do and what will have to wait until the next energy surge.  Not EVERYTHING needs to be at once. 

I wish I could afford a maid.  Although, the vacuuming still needs to be done on an almost daily basis.  My dog is the fluffiest non-fluffy dog in the world.  He walks and the long hairs leap from his body at a rapid pace.  Seriously, he's a hair machine!   And, I love to cuddle him but I swear I'm hairier than he is after I hug him.  I keep waiting for him to be bald one day but ... it seems when one hair falls out, three sprout in place.  But, I love him and I love that he always wants to cuddle me.  A dog's intuition is spot on.  I always need those hugs when he comes over and presses himself into my lap. 

My outlook is getting a bit better.  I've accepted that things are the way that they are, and I am focused on trying to enjoy life however that may be.  It may not be by losing weight as quickly as I want to. It may not be super strenuous hikes for awhile.  It will just be what it is for now.  I can't change it.  It's OK at the moment, I'm not fantastic but I am not dying either.   I have to remember that.  I am out of the hospital, I am able to live on my own.  I don't have major organ damage.  I have to focus on the positive.  I have to focus on what's good.

I am off for the next three days.  I plan on mentally and physically regenerating.  I plan on wrapping my brain about the happy go-lucky person I used to be and making her reappear.  I have to remember that being happy doesn't center around what I look like on the outside.  I am a Weggie, I take prednisone, I am stuck this way for awhile.  Best thing I can do is stop myself from gaining anymore and I think I have a good handle on that.  No one wants to be around a Debbie Downer.  No one wants to talk about my illness all the time.  There used to be other things I talked about!!

I want to be in better shape, I want to be healthy and live a long life.  Those are things I want.  What I can do is ... accept myself for who I am, know that I am a good person with a good heart, know that I am trying to control what's going on with me as best as I can to live a long life.   This is my life now, and who wants to be sad all the time?  I know that I sure don't.  It stops me from doing things, it keeps me from enjoying things.  I am alive now, I am not hospitalized, I'm not on dialysis.  I'm pretty well off in terms of what could be and what may be in the future. 

I can be happy.  I can live my life.  So what if my chores take a few days?  So what if things are different than they were before?  I'm in charge of my happiness.  I won't let this stupid thing take that away from me. 



Monday, August 26, 2013

Just another Manic Monday

I think I might be getting sick.  I know, I'm sick all the time, but ... I think I might be getting a cold on top of this.  I'm not sure.  It's so hard when my sinuses and other cold/flu areas are already rockin' and rollin' with the snot rockets, the congestion, the runniness, the sneezing and coughing and feeling like I was hit by a truck.  How does one tell when they are actually getting something like a cold?

I feel worse, for one.  Part of this is thanks to the new higher dose of meds I took today but ... I felt more run down before I took them.  I felt more congested and more coughy/sneezy.  I also did my sinus rinse and blew out some really gnarly green things.  Green means infection right? Was that TMI? 

I really hope I'm not going to be getting worse.  I really hope every morning when I wake up that I might feel a wee bit better.  I just want to be able to get through my day without whimpering that I wish I was in bed.  I want to get through the day without day dreaming about my couch or the fluffy pillows on the bed.  Today isn't that day.  Today I yearn to be at home in my sweats more than ever.  I feel lousy.  I feel miserable.  It is taking everything I have to put on a happy face and go along like nothing is wrong.

I know I don't have to pretend nothing is wrong.  Everyone knows that I have this blasted condition.  However, I kind of have a thing against whining.  I hate whining.  I know I do my fair share of it here in this blog, but I can't stand it when I hear it.  I can't stand it when it comes out of my mouth too, don't get me wrong.  Most of the time, I can tune it out.  I can let someone just do their thing, whine about whatever and not let it get to me.  Other times?  I'm not so successful.  In any case, I don't want to sit here amongst my peers with a sad frowny face on.  I'm not trying to call attention to myself.  I just want to be a part of the team like I always was. 

This may work against me in my hatred of the "You Don't Look Sick" comments.  Well, I'm sorry if I am trying not to make everyone uncomfortable by pouting all the time.  I have what I have and it's for me to deal with.  I don't need it to be front and center 100% of the time.  I'm trying to find my new normal. 

I have a busy couple of days with doctor's appointments, a dentist appointment, grocery shopping and going to the DMV.  I can hear your jealousy about my DMV trip.  You know you want to come with me! Anyway, I already feel like I've overdid it and am not looking forward to the rest of the week with my running around all over the place like a chicken with its head cut off. 

I am really trying not to overdo it.  Unfortunately, the doc appointments are necessary, the vet was necessary, the dentist is necessary ... it's not something I can really change.

Man, I really wish I was at home right now.  Really Really Really.

Friday, August 23, 2013

Finding the Positive and Quieting Myself

It's 8:42 PM and I desperately want to go to bed.  I can even do so if I wanted to because I don't work tonight and I am at home, in my pajamas, on my couch.  So why am I not in bed?  Because it's 8:42 PM.  I'm 33 years old, not 65, even though my body wants me to think I'm 180.  So why not rest my crumbling body?  Because I work nights 4-6 nights a week and it's hard enough to stay up as it is without flipping back to getting to blissfully sleep through the night on the weekends.  

I overdid it again today.  I felt like I was feeling good.  I made my breakfast, I vacuumed, I swiffered the floors, I dusted the living room.  I took out the garbage and recycling (after bringing in the cans from the street).  I started laundry, I cleaned the cat box and vacuumed the carpets, I made the bed, I emptied the dishwasher and did the other dishes.  After a shower, I decided to go for a walk with my dog for two miles.  

It had been my plan to go out for dinner with my husband as I had been cooking all week and I was looking forward to not cooking.  But, he's scuba diving in the morning and didn't want to eat heavy.  So I went to the grocery store and got stuff to make dinner.  While starting to make dinner, I realized I had done too much today.  I felt horrible.  I managed to make dinner but it has been a steady downhill spiral ever since.  

Now, my face is killing me.  It's like someone took a wire brush to the inside of my nose, and while they were up there took a few potshots at the inside of my sinuses and stuffed a bunch of the trash up behind my eyes.  

Before I run off on a tangent of whining, let me tell those of you who read this who don't follow me on Facebook about the daily photo/post challenge I have given myself.  For the next 30 days, I will find something every day that makes me smile/happy and take a picture of it.  I will also make a conscious effort to make a status update that is positive in nature and not whining or talking about my illness.   I call it "Finding Happiness" because there are little things out there that can bring happiness every day.  Sometimes, when dealing with something like a lifelong illness and a cancer diagnosis, it's hard to see those little happy gems out in the world.    I am going to make every effort to find those things and acknowledge them so that I may combat the sad/dark feelings that keep wanting to take over. 

I also want to start making a conscious effort to NOT talk about me with those around me.  It's clear that it's annoying, and I even annoy myself at times.  It's a part of my life, it's not bothering or affecting the lives of anyone else so ... I need to keep it to myself.  If someone asks, sure, I'll answer questions.  But it absolutely does not need to be brought up ... ever. 

I even feel like I can't talk to my husband about it.  So, goodbye disease, we aren't gonna be talking about you anymore.  At least, not with everyone.  

No, I'm not being "poor me" about this.  I just realized how annoyed I get when someone keeps mentioning something and it seems like they are looking for attention.  And, I have started noticing reactions when I mention things so ... I am not going to be bothering anyone with it anymore.  I think it will make everyone happy.  

Oh bed ... how I wish I could go cuddle you right now.  I also have the last load of laundry going right now.  I got a dress in the mail that I ordered on eBay and the seller was a smoker.  OMG were they a smoker!!!! I am washing the dress in the hopes that it doesn't smell like a tobacco smoke factory when it comes out. It's super cute too.  

Oh ... I joined the Vasculitis Foundation website and have been in contact with some people already.  I got an email from the head of the Sacramento Chapter of a Vasculitis Support Group.  They are actually meeting on Thursday but I won't be able to get to Sacramento  that day so I'll hopefully get to go to their December meeting.  She's also going to put me in contact with some other Wegener's folks via email.  I'm excited to have more people I can talk with .  

OMG.  Whose Line is it Anyway?  I love this show.  I am about to die from laughter!!!! 

Happy Friday Everyone.

Wednesday, August 21, 2013

Big Red Balls

Some of you went there  with that title and SHAME ON YOU, I say.  Not really.  I would have gone there too because I am a 13 year old boy trapped in a grown woman's body.  Anyway, have you ever watched that show "Wipeout"? If so, you know about those Big Red Balls in the first obstacle course.  Everything could be going smoothly on your journey through the course and then you get to the Big Red Balls.  I've never seen anyone successfully cross their path. 

I truly feel like I've come to the Big Red Balls and fallen off course.  Which course?  My course to being more positive and seeing the good in my life right now.  I know I should still see the good but at the moment, it's like I bounced off a big red ball and landed in the pit of despair. 

Now I'm crossing TV shows and iconic 80s movies but you know what I mean.  I'm sad.  I'm angry and sad but mostly I'm sad.  In fact, I spent most of my drive to work a teary blubbery mess. 

It's not like I have any ground breaking, upsetting news that has brought on this new batch of tears.  No.  It's just one thing after another and I stop myself and think ... Why me?  What did I do to get such punishment? Was I bad in another life?  Have I morally wronged someone somehow that I now have to spend the rest of my life in a battle of wills with my own body?

Today was another day of doctor's appointments.  First, the good ol' endocrinologist (thyroid lady for those ot up on the lingo).  My Thyroid tests are still not giving her an answer to what is going on in there.  I still have Hashimoto's, I still create antibodies against my own thyroid.  My poor little thyroid gland is an even bigger moth eaten mess than when she last peeked at it with an ultrasound. And, now she wants to rule out a growth on the pituitary gland.  I know it's common.  I know it's not life threatening but ... I have to do more tests for that and more blood work and more this and more that and it's just like ... ENOUGH!! 

I mean, I'm completely happy with my doctors and their willingness to test, test, test but at the same time I just want to stop with the testing already! I feel like going to Kaiser, parking myself in their labs and saying "Just do it all.  Test everything."

I have to have a Radio Active Iodine Uptake test or an RAIU for short.  Monday morning I go to Kaiser bright and early, take a pill to make me glow, go home.  Then come back 4 hours later to have them scan my neck and then head home (actually to work that day).  The next day, I go back to have them scan it at 24 hrs, leave for an hour and come back to have the ...................... MRI. 

MRI is a piece of cake right?  Sure, if you aren't horrifically uncomfortable with small spaces and currently are an obese fat ass like me.  I had to be severely medicated last time.  I had an IV and it was easy.  This time?  I have two valium.  Hopefully that will be enough.  I'm gonna try and NOT think about it until I have to.  I know what to expect it's just ... small spaces suck and when you are a big person having to squeeze into the same small space as the tiny people around you ... it's not fun. 

I'm not even worried about the potential growth.  It's just that there is possibly just one more thing going on. 

I already have a Japanese man and a German man fighting for top billing rights inside my body.  Hashimoto's and Wegener's.  Interesting, no?

So, a moment to spew some anger at the world about my situation, can I?  What did I do? I am a good person.  I have hardly drank in my life, I don't smoke, I don't do drugs.  I pay my bills, I pay my taxes, I work my 40+ hours, I gave my ex-husband EVERYTHING in the divorce, I have two bankruptcies because of him, I have done everything possible to live a good, clean life.  For what?  To be sick every day, to be in pain, to be happy one minute and then sad and then angry?  To have worked so hard to lose almost 40 lbs just to gain it all back and then a bit more?  I don't understand.  I feel like I am being punished in some fashion and then I think of the aforementioned ex and I am mad because ... he's got it made.  He got a new house right away, cars, marriage, kids ... everything HE wanted.  

Am I being punished for getting a divorce?  Am I being punished for standing up for myself and what I want? It's the only thing in my life I can think of that would have brought some great consequence down upon me.  My option of kids went from being wide open to ... possibly not at all.  I can't morally, ethically adopt a child in this condition currently.  I need to make sure I am going to be in a good place before I can even THINK about looking at that option.  I finally have a house but ... we had to claw and fight our way back to it.  There was no "easy out" for us.

I don't know.  I know I'm being petty but ... he screwed me over and is somehow living life and being happy and all that.  I want to scream.  I want to scream at the world.  I want to scream at whoever is listening anywhere that I am mad as hell at everything right now.  Because I am.  I am, damnit!  I'm mad and I'm sad and it's not fair and ... ARGH! *&^&#($*@(@(&^$(!!

OK ... I think I might have gotten that off my chest now.  Maybe.  POssibly.  At least for the moment.  I need to really be focusing on what's good about my life  instead of focusing on the shitty parts.  Because, there are good parts.  A lot of good parts.  Sometimes, it's just hard to see them. 

I'm sorry for ranting.  Like I said in an earlier entry, I've got a good grasp on what's happening but ... sometimes I have to be able to have a moment,  you know?

Have a good Wednesday everyone.  Don't forget to keep smiling.