Human

Sometimes I have to stop and remind myself that I am human.  I am not a machine.  I am not yet in a grave.  I am not yet a ghost.   It's weird.  This f** disease.  It puts you in this limbo land that makes you forget where it is that you land...  I am human and I am living.  My baby girl reminds me and grounds me.  And it's so fucking amazing.  She is getting so mobile.   She has this jump-er-roo thing...she can bounce and rock out in it- and it reminds me  of how I would bounce and jump for skating. It looks like she is going to launch into a triple axle at any moment.  She laughs and squeals and has the time of her life in this thing- and I love it!!!  I clap and laugh and sign out in glee with her!  It's like I'm landing a big jump all over again just watching her find her feet, watching her find her balance.  I think I'm understanding life a little better.  I'm having more of me taken away every day- but more of her is coming out.  And thank God, it's such an amazing trade.  I walk with a cane and I'm only 33, but my baby - she is blossoming.  She is amazing and she is thriving and it is wonderful!  Life is wonderful.  Not for me physically, and I'm struggling.  But maybe I can hang on.  Maybe I can be strong enough to see the results that I need to fully enjoy her life too....

My grandfather was the only man in his platoon to make it out of the guadal canal.  The rest of his men died.  He barely made it out - minus 1 1/2 lungs, half a foot and the addition of a lot of shrapnel.  He ended up having what we now know was RSD as well....and he ended up being an alcoholic.  My mom was so upset and angry at him for years for that.  I talked to her about it the other day. I tried to make her understand.  I understand.   I empathize.  I have my dad's DNA in me.  I have that crazy strong Russian-German stock in me.  That strong nails you can't beat me mentality.  I'd be good if someone were to torture me...wait, they are.  Anyway, I digress....  He was tortured for so long.  He came back from war a young man, missing an entire lung and half of his remaining one, most of a foot, lots of shrapnel and all sorts of other horrors....then the RSD set in.  Again - he was just a young man!!  Of course- the thing I hate to think of - I was just a babe in the woods when this stupid fucking disease hit me.  I digress.  He was a young man.  He was just a few years older than me.  And in the end - he knew he woudn't live to see 62 - and he said as much - for years he said he wouldn't live that long.  And he was right.   And he didn't.  He died just 2 weeks shy of his 62nd birthday. This disease is cruel. And he drank.  And I get  it.  I want to drink. Some days, the pain is so much- I just want to crawl into the bottle of wine and not look back- but then I realize that my baby girl needs me - and I push it away - and I hold on and I fight through it.  But it's not easy.  And I don't know when the drinking got to my Grandfather.  I don't believe it's  necessarily a "choice" one makes.  It's more of a survival instinct that one makes.  It's booze or a gun to the temple.  And really- the booze will keep you here longer, no?

So, that is the ramblings of a mind pushed much too far in the wee hours of the night.  I'm too tired.  And i just wish I could sleep. Wish I could rest.  Wish I could tell some people to go fuck off. Wish I could tell them that this is real.  That this is as real as cancer....and that if they don't think so...that's ok.  Karma is something I believe in ....and again - fuck you.

And with that - I bid you good night.  Because even if I don't sleep, I can at least lay there and rest my eyes and try to think happy thoughts to restore my body.  Please let this end happy.  I just want a happy ending.

Pay my respects to grace and virture

Send my condolences to good

Give my regards to soul and romand 

They always did the best they could

And so long to devotion

You taught me everything I know

Wave goodbye, wish me well

Human - the Killers

the Devil's loose

The devil.  God.  Heaven.  Hell.  It's the stuff that people go to war for.  The stuff that people fight and kill over.  I'm not here to argue that or spark a debate over either one.  Sometimes I can't help but wonder though.....  I don't know how you don't see God when you're in nature....when I can find some respite from the pain by stopping and allowing myself to soak in some sunshine on my weary bones, listening to the birds calling to one another and gazing out onto the rolling hills.  and the Devil.  Well, I met the Devil 14 years ago.  He and I have too close a relationship due to the RSD...I'm forever tempted to pull that trigger, to make that final decision, to join his team.  Lucky for me, and unlucky for him - I'm one strong willed, bull headed woman that keeps pushing that rock up the hill, only to start over again the next day.  I may not be greek...but I married a wonderful Greek man.  And now I'm living my own greek story...I'm pushing that rock up the hill.  And forever will be.

It was another really hard day.  I thought I was hiding it well.  Thought I was deflecting it well.  I guess not so much.  I got called out on the pain in my eyes.  How fragile I looked.  How worried someone was for me.  That I wasn't to stay just to be a martyr.  That shocked me.  I thought I had covered my pain well.  I didn't realize that people that know me in the peripheral would be able to pick up on these things.  I though that they would just be oblivious...I guess because usually people are usually so busy telling me how good it is, how lucky I am, how fine I look, that I didn't think anyone could be capable of acknowledging how I really am.  It was a shock.  And it honestly was refreshing.  It was the truth.  It felt good to feel like I was really being seen.

I've had to set my pride aside and use my cane this week.  In my early 30's and using a cane.  I may not be that into caring about how I look (or so I tell myself), care if I have spit up in my hair....but using a cane in my early 30's...that's a hard pill to swallow.  I just wanted to use it and put my head down and not acknowledge it.  I just wanted to use it and not make a big deal out of it.  My boss - my big boss - on the other hand - was loud and made comments about how fancy my cane is....  it was mortifying.  I hated it.  I wanted to hit him with it.  It was like -hey - please call MORE attention to this.  I was so so so mortified.  I hated him for it.  But, I'm more stable with it - and honestly, I'm giving into things.  I am not the stable person I use to be.  I'm a lot more stumbly.  I get more off balance and I need help walking more.  So, I just put my head down - and that's the way it is.  I just am getting better at letting go of things.  Do I wish that I was back to my size 0 and totally healthy able bodied self- of course!!!!  Can I let that drive me crazy - no.  So, I'll try to do the best that I can and just soldier on. What else can I do?

Here's hoping tomorrow is a little better than today.  If not that, than let it not be worse.

And what doe a mirror show you

Can you see the grey

Your sadness is quite lovely

But it is the sadness of a slave

Why don't you give your self a rest

Give yourself some room

you can't get your arms round everybody

You cannot carry the doom

Of the living and the dying, how easily you bruise

Oh Dehlia don't go round when the Devil's loose

A.A. Bondy - When the Devil's Loose

Rise (and fall)

I keep wanting to write.  I keep finding myself too exhausted.  Too weary.  Too scared.  Too everything.  Not enough of anything.

I drove west and thought I'd find the answers that I was looking for.   I promised myself that I wasn't going to go looking for big answers, wasn't going to look for miracles and yet there I was, like a kid hoping to catch Santa at Christmas, wanting to believe in the things of miracles again.  I went out there and got my hopes up.  I found some answers.  I found half answers.  I found enough to get me through going to work.  To pushing through being away from my baby.  To forcing my body through motions that it's screaming against.

I got a call today that was bad news.  I got a call today that put the brakes on the whole plan.  I saw the hopes of everything dashed.  I saw what I was pinning all  of my hopes on dashed.  I saw that bubble get burst so quickly.  I crumbled just as quick.  My resilience has worn thin.  My faith has worn even thinner. I'm seeking solace in things that I know will bring comfort that are safe; like my babies smile; and those that are dangerous; like a bottle.  I'm skirting the edges, getting dangerously uncomfortable with where my mind is going.  I'm not liking where I'm going.  I don't want to be this person.  I want to be me.   I want to be happy.  I want to look in the mirror and recognize the girl staring back.  But right now. Right now I have to look deep to find the me I once was.  Right now, I have to dig deep to convince myself that it'll be ok.  That they'll be better off with me here fighting to stay in this messed up body.  That they won't be better off without me.  Because in the middle of the night, when I'm exhausted and wracked with pain and there isn't any hope in sight - I honestly don't know anymore if he's better off with me here.  I think he might be better off if I weren't.  But I still hold on, I still fight like some crazed soldier on the battle field, riddled with bullets and for no sane reason still able to soldier on - because in my heart I still believe that she needs me, that no one else can love her and protect her the way that I can.  And I guess that's the only reason that I still get up, that I still go into work, that I still torture myself in a chair for 5 hours, when by the end of it, on the entire drive home the only thing I can think is "focus on her" because if I don't the only other thing I can think is "what would it be like if I just punch the accelerator and hit that concrete divider.  Would I even notice?  Could it even hurt any more?

So I go west again next month.  They put more needles in me.  I'm suppose to feel less pain as a result.  Do I have more faith in that?  Do I have faith in God that he'll help me get through this?  I honestly don't know what to believe...what to hope for.  I just know that right now....right now I can't imagine holding on for much longer.  I know that my husband needs me too.  I need to stay strapped to my desk chair, fighting the good fight so that I can contribute to our income....and yet.  The thought of continually doing that...makes me want to cash in on my life insurance for him.  I can't handle it.  I can't stand the torture.  I can't do it.  I just can't.

So.  So what do I do?  How do I get myself out of this mess?  How do I get myself healed?  How do I find the strength to know what direction to go?  What fight to fight?  Well, isn't that always the question?  Isn't that something that plagues everyone to some extent?  I guess I'll just have to fumble along and continue to see where life takes me.  And hope that as long as my heart is honest with my mind - that it will all come together.  I just feel like....there must be a reason, a purpose to all of this.

I need to write more.  I need to find an outlet.  I need to let go of this.  I need to let myself know that it's ok.

Such is the way of the world

You can never know

just where to put all your faith

and how will it grow

Rise - Eddie Vedder

Monster

I'm totally keyed up. Lists running thru my head. Pain running thru my body... Fear. Apprehension. Pain. Nausea. Hope. Feeling lost. Mixed up. Like I'm about to set off and in a big way- but I don't know how or where... Feeling unprepared.. Feeling like I've got many battles ahead of me. Feeling very tired. Feeling my bones grinding even when I'm laying perfectly still. Feeling lightning strikes over & over with no thunder. Feeling like I need to wrap my arms around and hold on tight to what I love b/c it's about to get scary.

I try to read to distract myself from the pain- that only makes it worse. Too many stories crowd the pages & headlines- animals abused and killed; children and babies- so innocent and beautiful, beaten, abused & killed. What has become of our "civilized" society? I have to endure this hellish pain day in and day out. It's a horrid disease with no cure. Why is it our society is so intent on running around and inflicting so very much pain on innocent and helpless victims? To abuse an animal or a child is the lowest form of "person" you can be. I loathe "people" like that. I must endure my pain. I have to suffer. No child should. No animal should. I want to protect them all. I'm sad and sickened that in our advanced and civilized country child abuse & animal abuse is the open dirty little secret. Why are we not doing more? We will never cure cancer, RSD, MS or anything else if we can't even take a strong stand and go after deviants that pray on animals & children & take them out of society. I wish it were at least that my suffering meant that someone else- a child or animal- didn't have to feel pain; because that's all I ever feel.

Feeling like I want sleep- and it's not going to visit me tonight. The damn RSD monster is rearing his head & making his claim for tonight. Feeling too weak to fight. And feeling like I've rambled. Ehhh. So be it.

Loud

The sound of the pain is so loud.  Loud?  Yes, the sound of the pain is so loud.   Pain isn't only something I feel in a physical sense, it's also something that blots out my other senses.  Things don't taste as good when I'm in pain.   I definitely notice how loud the pain is at night.

I lay in bed and the sound of the white noise machine is soothing and my baby girl shuffling and sighing in her sleep in the crib in the corner of the room.  I try to focus on these noises.  I try to hone in on these sounds and use them to relax, to un-tense my body, to lull myself to sleep.  But the pain in louder, and before I know, it's all that I can hear in my mind.  The pain creates a buzzing sensation in my body- and it's also a buzzing sound in my mind.  It's a humming that I can't ignore.  The throbbing and hammering as I feel the bone pain setting in - like some twisted little elf has decided to hammer away on my metatarsals, slamming my feet with a jack hammer.  The muscle spasms won't be far behind, which means that my achiles tendon will be throbbing and feeling as though it's getting pulled out by a fish hook in the very near future.  Suddenly my ears are swamped and flooded as though I've been sucked underwater.  As my pain shoots ahead to another level, my blood pressure surges and takes off even though I try to imagine my pain in a bubble, try to imagine it drifted off and capsulated away from me.  I fight to stay calm, but I lose the battle.  My heart is off to the races in an effort worthy of the Triple Crown.

Suddenly it's overwhelmingly loud in my room and I'm overtaken by the wave of pain.  I feel the blood dripping down my legs and I reach down to try to wipe it off, to try to see how bad it is out of habit, before I can remember that it's just the nerves playing a nasty trick on me.  There is no blood dripping down, just the feeling that it is.  I gently massage my calves and my arches to keep the muscles spasms as bay.  I focus on my breathing and try to match it to my baby girls.  I think of the places I want to visit before I die and put them in alphabetical order, and then reverse alphabetical order.  By the time I do this, the whooshing and hammering and flooding and buzzing noises have subsided somewhat.  I exhale slowly one more time.  I purse my lips tightly as I blow out a long even breath.  I am strong.  I can handle this.

The night has shifted back to its normal calmness.  It's quiet and peaceful.  I think of my list and remember that after watching tv with my husband on Friday, I mentioned that I want to see Prague one day with him.  I will have to add that to my list when I am calming myself.  The only debate, do I list it by city or country?  All the better to decide while I am trying to distract myself from the pain.

And now, now I'm going to lie down and start this whole process.

In the City the Lion sleeps

Pray to Sony my soul to keep

Were you ever so bright and sweet

Did you ever look so nice

And all the sounds

Dream for me

Semisonic - Singing in my Sleep

The long way home

In the lead up to my big visit to the Cleveland Clinic I have so many questions swirling in my mind.  I have so many unanswered questions, and I'm trying so hard to not get my hopes up too high.  These doctors that I'll be seeing, while very intelligent and at the forefront of the field, do not hold all of the answers.  They (unfortunately) do not hold the key to fixing me, to making me whole again.  It's hard really.  People that see me hurting are so excited for me to see the doctors out there, but I'm cautious, and at times concerned by how enthusiastic they are, how much hope they are pinning on this visit.  I want to warn them, scream and clang bells that I won't be put back together.  Much like humpty dumpty, my tumble down off the wall has left me in too many pieces.   No matter how much I wish I could be whole again, no matter how much I dream of waking up and not being in pain, of just being able to walk normally, being able to get up out of a chair, off the ground, to kneel on the floor with my baby- these things will not return to me simply because I've gone to the Cleveland Clinic.

Can the CC offer me more treatment options than are available where I live?  Yes, absolutely.  Can they provide me with a higher level of care that will result in a (hopefully) higher level of functioning?  Yes, more than likely they should.  Can they make this all go away and make me a totally normal and healthy 33 year old woman?  No.  No they can not.  Do they hold all of the answers and the only treatments?  No, they most certainly do not.

I'm faced with a lot of questions and soul searching -both going into this visit and I think coming quickly on the heels of the visit.  Questions of work, life, health, happiness balance.  Questions of mind over body.  Questions of how hard to push and when is it too hard and too much.  Questions of taking that scary first step into the unknown and going out into untested waters.  Both in treatments and in professional life.  All of these things have ramifications on my home life.  Most important of which is making sure that my baby girl have the absolute best life possible.  My life and my quality of life now comes second.  She is first. I am second.  That is just the way it is going to be.

I feel like I'm speeding along -flying too fast along a blind curve; not knowing what it is that is around the corner, how sharp of a hairpin turn it is, and I feel the wheels starting to slide across the center line.  I feel that I'm in for a big shift, a big change.  Something has got to give.  Something is going to happen.  It's building.  I feel it.  I just don't know where all the changes will be coming from.  I just have to keep faith that I can keep my head above water and do my best.  That together with my husband we'll be able to weather whatever new storm we encounter.

I'm peering out into the darkness and I can't see a thing.  I'm stretching, I'm hesitating.  All of my senses are alive.  I'm ready to take that first step.  The only question is - will it be a small step to meet my foot, a giant drop down in the floor, a riser that I bang my shin on?  I guess only time will tell....

Bittersweet memories of the road to my regret

Tryin' to change the whole world, ain't nobody did it yet,

Yeah this life can be cruel, yeah this life ain't always fair

yet we hope to ascend to the place we send our prayers

But do you, do you, do you know where you're going?

The Long Way Home - MOFRO

7 Nation Army

I look in the mirror and it's difficult.  Yes, the normal after the pregnancy thing isn't easy - I've got the wobbly bits, the extra padding in the tummy, that stupid extra layer that is clinging on for dear life like a drowning man that doesn't know how to swim.  I'd be lying if I said that those things didn't bother me.  Of course they bother me!  I hate the belly fat.  I hate that I have a lovely closet full of clothes that don't fit.  I hate that practically every single shirt I own either clings to my boobs, my belly or both.  Getting dressed used to be fun - it's now a chore and it sucks.  But it's just a part of life. I'll get over it.  That's not the real reason that facing the mirror is so maddening.  When I look in the mirror, I'm having to stare my enemy square in the eye.  I'm having to look at what I hate the most.  And try to find what I still love and want to fight for.  How do you have the two extremes at the same time?

I want to fight for my body.  I want to fight so that I can be the best mommy, wife and ME that I can be.  I want to be able to play with my daughter at the park, to push her on the swings, to crouch down and catch her at the bottom of the slide, to roll down a hill with her, to chase her as she learns to run all wobbly on her new found freedom like a little deer.  I do not want to watch from the sidelines as my my husband catches her at the bottom of the slide, chases her around the park and proudly teaches her everything that I dream of doing.  I don't want to be relegated to a wheelchair with my camera in hand to take photos of the moments that I want to take part in as well.  Don't get me wrong.  I love my camera.  I love capturing the moments - big, small and everything in between.  But I want to experience them as well.

This brings me back to my hatred of the mirror.  I'm struggling with hating my body.  It's betrayed me.  It's a traitor.  Or at least part of it is a traitor.  Part of my part is harboring the RSD, which is running rampant.  It's taking over - like some mean drunk on a rampage.  It's loud, it's scary and it's breaking things.  Lot's of collateral damage to be had.  I'm falling to pieces, more and more of me is breaking down and I feel as though I'm a hostage within myself.  I'm equal parts angry, scared, sad, mournful, and a mix of emotions that I can't even how to explain.  I feel as though I'm fighting a war and I have run out of ammunition.  And part of the problem is - I want to just light it up - absolutely napalm the area because it is wicked and cruel and it has got to be eradicated.  The problem being - I am harboring the evil.  So - do I go do with this thing?  I know I once was stronger than the RSD.  But 14 years is a long time to fight a war.  It's a long time for anything - but to fight something...well.  It's worn me down.  I didn't really notice it until lately but - I've really noticed it.  I've slowed down and I'm in a lot more pain.  And I don't handle my pain nearly as well as I once did.  I don't fight as well as I once did.  I don't bounce back as easily.   I get tired a lot more.  I just want to nap.   I feel as though I've aged a lot in the past few months.  Of course, almost dying might have something to do with that.

So.  That brings me back to that mirror.  Do I hate the image that I see.  I squint and I look for you, RSD.  I look deep into my eyes.  I scan over my legs and I stare hard at my arms.  I roll my hands and tense my muscles.  My face tightens and then relaxes.  I give myself a faint smile.  It's me.  I can recognize me.  I still can see that girl I once was.  I can see the mommy that I am.  This is the face that my daughter sees.  The one that makes her smile.  The one that might does still manage to light up my husbands face I do believe.  I don't know how, but I'm still in there.  I'm still winning this war.  I see me.  I'm still tangible.  The RSD is tangible too.  I see the blue waxy skin on the right leg.  I see the red angry skin on the left.  The poor nail on the left side is starting to heal - and the scar line on the right is extra angry today.  But that is not what defines me.  I'll slap on another pain patch.  I'll prop up my leg, I"ll rock away in my glider and I'll listen to music to bring my heart rate down because I feel it pulsing higher and higher.

I just have to remember.   I AM a fighter.  I AM a warrior.  A 7 nation army couldn't hold me down.

And I'm talking to myself at night

because I can't forget

Back and forth from my mind

behind a cigarette

And the message coming from my eye 

says leave it alone.

7 Nation Army - The White Stripes