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 ....

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