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.