Ho Hey!

This is going to be my attempt at an upbeat post.  Now that most (if anyone reads this) of you have dropped dead or at the very least fainted from that statement....here goes.

I keep dropping off the radar.  Slipping off the map.  I think I'm much like a ship that was on a map from the days of Christopher Columbus and the proving/disproving of the world being round or flat....sometimes I'm that ship that falls off the edge.   But, wait!  Here that ship comes round again.  It just took a very, very long time to see again.  What can I say, I took the slow boat to, well, get to you.

My life is in chaos and tatters.   This summer has been cruel in every sense of the world.   The weather has been fickle and bitchy like no other.   The weather crushing me to a fine powder as if to hope to just "fufff" me into the wind after the final bone grinding, body crushing finale.  Any hope at taming the beast for the summer was given up a long time ago.  My normal "happy" time, my time of equilibrium has been gone like bubble burst on the ground, shattered like fine china on concrete.  It has not existed this summer.  Oh well.  Who wanted a reprieve anyway?

I'm still fighting the bastards at Prudential.  They are assholes.  Total and complete evil bastards.  I truly do not know how anyone at that company can sleep at night.  They are just - the lowest of the low.  I don't want to go into it further than to say - the devil has his soldiers on earth- and the recruiting headquarters is good ole Prudential.  I'd say go to hell - but to them, that's home sweet home.  So, instead, I'll wear some garlic and shake some holy water at them and hope it does the trick.

The good news is - the big surgery - the big daddy one is coming up.  As in, tick tock, next month.  While that is very good for me.  Excellent and exciting and a new chapter for my life and my disease and for my family life - it's also terrifying and anxiety inducing and leaving me wondering where this leaves me.  My pain psychologist is a great help....but my mind keep churning and piecing over things and I can't help but continue to work on things.  Even in my sleep I am bothered by the upcoming surgery - which was moved up by more than a week just this week.

I struggle and struggle to fall asleep - and when I finally do- I'm in an operating room and they are performing the surgery.  They are making progress ok, but when they try to bring me up, it goes wrong - and I have a stroke.  And that dream is on repeat.  And I hate that dream.  It's terrifying and should just go away and never come back.

I'm scared.  I'm anxious.  I'm nervous.  I'm excited.  I'm hopeful.  I'm torn.  I'm uncertain.  I'm wavering.  I'm still not sure if I'm doing the right thing.  I'm scared something will go wrong.

What I do know?  That my husband loves me more than anyone or anything - minus our baby.  That little B loves me like no baby every could.  I've got a mom that loves me so much that she would carry me on her back if she could.  That I've got a dad and brother and sister-in-law that care and want the best for me.  I've got people in my corner here on earth - and angels in my corner from the heavens.  So....I need to take a breath, figure out a good mix of music to listen to and just learn to ride these waves of anxiety and fear as I get closer and closer to the date.  And know that as I go through the 8 week recovery, I have those that I can lean on.  People that love me and will let me cry and also help me find me strength and help me to dig deep.

I have to look at the good.  I have to remember this is for the good.  This could bring my life back to me again.  Life a boomerang, it could bring my life back into my obit, rather than keep it just out of my grasp.  I refuse to lie down and let my body crumble and die without taking a chance and fighting for me.  I'm worth it.  I'm worth it - and it's time I remember that.  Even if certain companies try to tell me that I'm not worthy, well, fuck them.  I AM worth this.  I am worth saving, worth fighting for, worth putting the pieces back together again if possible.

Ladies and gentlemen - see you on the other side - if not before then.

I've been trying to do it right

(Hey!) I've been living a lonely life

(Ho!) I've been sleeping here instead

(Hey!) I've been sleeping in my bed

(Ho!) I've been sleeping in my bed 

(Hey!)

(Ho!) So show me the family

(Hey!) All the blood that I would bleed

(Ho!) I don't know where I belong

(Hey!) I don't know where I went wrong

(Ho!) But I can write a song 

(Hey!)

1,2,3

I belong with you, you belong with me, you're my sweetheart

I belong with you, you belong with my , you're my my sweet

The Lumineers - Ho Hey!

Say Yes

It's so very easy to get mired in the mess of this disease.  To get trapped like an animal in quicksand, you try to fight the disease, fight the beaurocracy, fight the tides, but it's a losing battle.  You just get pulled down deeper and deeper to a dark place.  To a place where you become immobile with the fear.  With the pain, the terror, the anger, the grief of the life you had.  The heartache and constant stress of medical bills piling up, food still needing to be bought and a family stretched to the max on an income of one. So bitter that I'm unable to move anything forward faster.

And yes, that paralyzes me at times.  That floods my brain with worry on top of my worry.  I do get bogged down in that stress and that strain- I may not feel human anymore, but I am.  So I turn to music.  I flip through my collection with a precision and determination of the most skilled choreographer.  I once was.  I could spend days, weeks, months, dreaming up a theme, finding just the right pieces of music and then sitting up into the wee hours of the morning cutting it until the final piece was flawless.  Until it sounded like one perfect piece.  I search and I find, skip and move through until I can settle on something that will satisfy my bones (not hurt me with the vibrations), my mind and my soul.  I can spend hours surfing around from genre to genre but as I do I often find myself focusing on happier times.  Music is memory to me.  It transports me back and shows me the future.  In my minds eye, I'm me and I'm not falling apart and stressed about no money & big medical, craptastic LTD insurance that keeps trying to give me the cold shoulder and basically the "fuck off".  No.  When I listen to my music.  I remember to find happiness.  To count blessings, however small they may be, to smile.  And I also occasionally sing "fuck you" when it's the right song.

In the quiet of night, when I'm flooded with pain, awake, alone, scared & so sad- I love this one instrumental song.  I don't know how to explain it- bit it makes me feel as though there's something bigger coming down the pike that's better.  That its ok to say yes to happiness.  To love.  To me.  I am still worthy.

Say Yes ~ Theater Fire

demons

People get too wrapped up in the package of things.  If it looks shiny and pretty it must be good.  If that apple is polished to a gleaming red and blemish free it must be great...forget that it's pumped full of chemicals and pesticides and horrible for you...Same with people.  Same with me.  I'm young and people look at me and apparently because I don't look like a total train wreck with they see me - because for whatever reason it's the Southern girl hidden deep inside me (or the Russian) and I will not let you see me flinch or falter and I'm not going to let you see me off my game if I know your coming round.  So, I brush my hair (or have my hubby help me) and I put on comfy gear and people tell me how great I seem, how good I look how great I must be doing.  I smile, I grind my teeth and I do my best to not cry.  Sometimes I giggle and I do my best to not let it bubble up and laugh like some crazy lady.

People tell me how great I deal with things.  People are also happy to tell me that God never gives you more than you can handle, that God will give you something to help you grow/grow closer to Him.  That I am so lucky that I don't have cancer.  That I need to make sure I focus on my child.  That I need to be grateful for my child because so many people aren't able to have a child/have children that are sick and mine is healthy and luckily it's me that is sick and not my child.  Etc. etc.

People tell you a lot of things when you have a disease with no cure that isn't terminal....per se.  I mean, this will eventually kill me.  That's the funny thing.  Unless something else creeps up, this is going to be what kills me.  I've talked to my pain therapist about it.  We were able to even go through the things that people say and laugh at some and talk about how to respond to them (other than just chucking some of them on the head because really?!  You must be pretty sure that I am not well enough to cause harm is all I can say....) and what to do to make me feel better about ignoring them too.  This disease takes most people down with suicide.  The pain is so unimaginable and so unbearable, and to live a lifetime with it...well, most people just can't.  So they check out.  Then there are the collateral damage problems/diseases that happen.  Something will take me down.  But....I don't want to think about it.  I try not to.  But the one that scares me...the aneurism/stroke....that scares me.  I hope if that happens, that it's a lot further down the line.  Like way down the line.  I want to see my baby graduate college at least, preferable get married.  But when I go, I want it to be quick.  I don't want to linger.  I want it to just zank me out of this world and into the next.

As for the number one reason most people with this disease don't stick around.  I'm always surprised when people seem so shocked that suicide is the number cause of death for this (well, as much as it can be reported, b/c the numbers get tricky, but, yeah, widely reported it is) disease.  I am baffled that people are shocked.  I mean, imagine the WORST pain EVER in your ENTIRE life, then MULTIPLY it by 10 and imagine it never ending.  Well, it can go up 9 more notches or down 1, but that's essentially it.  I mean, you feel stripped of all your flesh, then dipped in gasoline, set in fire, put out, doused with vinegar, rubbed with salt and sand, pounded with nails, lit back on fire and repeat over and over with pounding and punching and other awful feelings.  Would you want to keep going?  Especially since no one else can really SEE that you are on fire.  I mean, you skin is kind of blueish and things, but overall, people just tell you how "great" you look.  They want you to just suck it up and go on.  How well would you be able to go about your life.

I think most people would start to crumble.  I think even the strongest person in the world would struggle to keep pushing through.  You are essentially a prisoner of war to your own body.  You are being tortured over and over day and night, there is no rest or break or reprieve from the pain.  You don't get holidays or weekends off.  No date nights or sporting events or school plays or special days where it leaves you alone to be normal.  No, it's always hounding you.  But you look normal, so people bump into you, hit you, shove you and in general hurt you further and knock you with their shopping carts, brush against you in line, etc.  And you want to scream and shove them away.

And work.  Yeah, good luck with that.  So, it's of little wonder that this normal looking, 30-something, young, happily married, mama that looks fine, sometimes thinks about just what if I didn't have to be here.  Is there a heaven because I can't do this.  Because the pain is so bad that the undertow starts to pull me under and suck me down and I can move my arms and legs anymore.  I can't kick for the surface.  I can't breathe and the bubbles trailing up to the surface are getting smaller and smaller.  And so I let go.  I don't fight it.  Because I don't have the energy to fight, and sometimes I just have to remember, remember my husband, remember my baby, remember my dogs...and my heart swells....and it carries me to the surface.  I'll float there, bobbing along, taking breathes until I'm ready to start paddling again.  I'm not ready to go yet, but I understand.  I don't need some stranger to tell me how grateful I "should" be for my husband and baby.  My heart swells with love for them.  The only reason I haven't been pulled under for good is because of them.  I've got my demons.  It's ok.  I've also got my saviors.

they say it's what you make

I say it's up to fate

it's woven in my soul

I need to let you go

your eyes, they shine so bright

I want to save their light

I can't escape this now

unless you show me how

Demons ~Imagine Dragons

Landslide

I've been through a lot in the past two weeks.  That looks odd to me seeing it staring back at me.  I mean, I've been through a lifetime in the past year, what with the docs missing the infection I kept insisting was going bad and almost dying when I went septic.  Then there's the whole living with an incurable disease for going on half my life now - and I haven't even hit 35 yet.  So, yeah.  That first sentence looks odd.  Comical really.  But it's true.

I've had a major trial surgery. An experimental one.  There were glimmers of hope and some relief.  After some relief I had that ripped out - quite literally as it end up - and over a foot of leads would just whoosh, exit my body in a painful way.  I'm still smarting from the exit wound on the one side.  I'm bloody and battered and the pain levels are even worse - because after finding some relief, I then had the relief taken right back out and I have the pain of the procedure in reverse and the pain coming back full force.

Now I'm dealing with waiting for the hoops and jumps and additional tests to see if I'm even well enough to attempt this surgery fresh on the scene.  If I clear and they deem me fit to operate on, I have to be cleared by insurance as worthy of this new wonderful, life and sanity saving surgery.  I hate the waiting, the hoping, the feeing hopeless.  The feeling worthless.  God how I hate feeling worthless.  And helpless.  I hate both those feelings.  And the pain.  I hate many of the feelings I have these days.

I remember when I was in control.  I was a skate and in control of my edges.  I excelled at my footwork and I loved the feeling of flying across the ice the wind biting at my face and the sound of my blades cutting into the ice.  Even when a jump when crazy, when I would get off center, I was like a cat and could still managed to will my body upright, keep my feet on the ice and my butt off of it.  I was in control.  I could spin so fast that most people were dizzy and wanting to puke just watching, but I was in control and reveled in the fast rotations and whirling dervish feel of increased G's!

I remember when I was still able to fight the disease harder.  When I could coach and ignore and pretend the dead foot feeling was because the rink was cold - but strange how it only affected just the right foot for the longest time.  I would spend hours trying to figure out why my foot burned and was dead feeling long after I left the rink, but I was still blissfully able to keep on the ice, keep coaching and keep working with my students.  I was able to keep doing the job I love.  After I couldn't do that any longer, after the writing was on the wall, and a doctor told me STOP!, I changed fields and excelled.  But with the high travel demands and a boss that was an absolute bitch and a HR boss that announced "remember if you want to fire someone for a medical issue, make sure you don't put it in writing, but if you do, we can make that go away too"....Thanks HR - and GO Gators.  Assholes.

So, this has been an increasingly hard journey.  Not just in dealing with the increasing pain, loss of movement, loss of mental facilities, loss of my freedoms.  No.  It's been a loss of everything.  I have been losing and hemorrhaging since RSD crept into my life.  It's a sucky life since RSD crept in.  I love my daughter.  I love my husband.  I love my dogs.  But it sucks having my life sucked out of me so that I can't fully enjoy it.  That I can't help provide for my family anymore.

It's getting harder and harder navigating this life.  It's getting harder and harder to be me.  I use to love being me.  I was athletic, I loved school, I was happy being me.  Now, it's so hard to be me.  It's painful, it's tiring, exhausting and when I do use my handicap pass because I'm young and not outwardly "disabled" as people think of it - I get hissed at and once, spit at.  It's not a life I thought I'd be leading.  I did always want to be a wife and mama - and I am and it's wonderful.  But, I'm struggling.  But it's all the rest of it.  It's all the rest of the stuff that is just not there, or is there and it's making me drown and I'm not sure how to navigate this life.  I'm not sure how to be me, this me, this new me.  I'm not sure how to keep going.  I'm not sure how to keep breathing some days.  So, I just do, and hope it passes.

And I saw my reflection in the snow covered hills

'Till the landslide brought me down

Oh, mirror in the sky

What is love?

Can the child within my heart rise above?

Can I sail thru the changing ocean tides?

Can I handle the seasons of my life?

Landslide - Fleetwood Mac

Sweet thing

Thank god for my daughter.  My husband.  My dogs.  My mama.  My dear friend NL.  The rest, they are all drifting and falling to the ground like confetti after the party.  Once vibrant, once festive- now sad reminders of what a former snap shot in your life has been.

Maybe it's the wee hours, or the wine, or the massive meds to help me with sleep & pain... But it makes you see things.... People, life, events, through a different scope.  It's honestly like closing my eyes and watching a movie of my life unfold.  Right now I love it.  I'm still at the part where I'm whole, I'm healthy, I'm untouched by this f'n disease.  I can still move without pain- break into a jog, skate, hike, sleep- live my life!!  I'm me!  It's me before the pain started etching lines and wearing worry into my face.  People that don't know me don't really see it, but if you look into my eyes, it's there.  

Crazy "fun fact".  My husband has actually never known the real me.  I mean, yes he knows me- my real name, who I am & all - but all the me that was damaged by RSD already.  He never knew me before it took hold.  That saddens me to my core.  

But the sweet thing?  Our daughter.  She amazes me and lifts me and makes me want to keep going every day for her.  I want to be strong enough to have another child too!  I want us to be more confident in my life and choices.…I just want her happy, protected & wanting for nothing.  I want her to have her mama.  A mama that is closer to whole than closer dead.  A mama that doesn't taste the blood in her mouth from biting down on her tongue to choke down the scream - because a loving hug from her baby girl rockets pain through her system.  I'm going to fight for my girl, my sweet thing.  She makes life worth fighting for, worth pushing through the pain, enduring the unendurable.  

For her, I am bullet proof.

And I will raise my hand up

Into the night time sky

And count the stars

That's shining in your eye

Sweet Thing -Van Morrison

Fix You

The thing about this disease, this wretched f'ing disease is that it breaks you down.  It crushes you under the weight of yourself.  It wears you out.  You are trapt within the confines of a prison, a war camp.  The problem being that your own flesh and blood, your bone and nerves are the walls and barbed wire fencing you in.  There need be no guard with a gun or a steely eyed monster at the gate, you are suffocating under the weight of yourself.  You can never escape it.  You crumble under the walls of yourself.

I sometimes question if it is worse that I was an athlete and know how much I'm missing and how good I had it.  Or if it was such a joy and a gift and a blessing for the time that I did have.  Regardless, it's all fairy dust and smoke and mirrors now.  Some people are still confused when they see me that I don't skate "not even at all".  It's funny.  When I do venture outside the confines of my home base, on my good days, I always run into people.  I always wish that I didn't.

The disease tears you down from the inside.  I'm like a house that looks pretty from the outside.  You see it.  It may have a pretty paint color, cheerful flowers, things might look nice on the outside.  Be forewarned.   Don't go in that house.  You could lose your life.  The foundation is crumbling.  The walls are sagging, the floors are slanting and the roof could give way at any moment.  Yet, you wouldn't know it to look at the home.  You'd only find out when it's too late.

I'm scattered right now.  My mind is whirling and twirling fast and slow.  I'm not finding the words that I want.  It drives me mad.  I hate that I sit and my fingers linger over the keys, while my mind chases down the path, like a toddler fumbling after a butterfly, both hopelessly slow and behind the pace needed to get what is wanted.  I'm exhausted.  I'm not sleeping.  I have taken all of the clocks out of my bedroom.  I try to watch a movie, watch a british murder mystery, focus on anything to keep my mind off the pain - and yet I know that the clock keeps ticking.  I'm exhausted, and I can't sleep.  So I slowly swing my feet over the side of the bed, pad to the bathroom, pad to my childs room to stare at that angelic face rhythmically breathing in and out so peacefully, shuffle slowly back to bed and try once again to find the sleep that eludes me.  I've enough meds in me to knock an elephant out at 100 yards, and yet, I can't fall asleep.  The windows start to stain with color and I realize that I've lost another night to this disease.  I look at the clock on my phone and realize that it's after 5AM and I should have been asleep hours ago.

My husband and I fight.  I feel like I fail him.  That my failing body is failing him.  Failing our family.  That it's making things too hard on us.  I'm bankrupting us with my medical bills and treatments that aren't even making me have quality of life.  And I'm angry and sad.  I have love and peace at times i the day with my daughter, but I'm struggling with being wiped out, tired, overwhelmed and so many things.   And these are things that are pushing us apart.  He wants to fix me.  He doesn't feel like I'm grateful.  He doesn't think I'm trying.  He doesn't understand that I am.  He doesn't understand that my fingers are bloodied and my nails are ripped off from clinging on.   He doesn't seem to realize that I am hanging on my a thread.  That I love my family so much that I am hanging on for them.  But it's hard.  That I am absolutely shattered by the guilt of this thing because I don't want to be this girl.  I don't want to feel so broken.  But it's like a tree wishing to be anything other than a tree.  It's my lot in life now.  I just have to figure out how to make it better.  Or how to cope with it better.  Or how to walk into the ocean.  But I know that we can't keep fighting.  That he can't fix me.  And I can't fight him or be angry at him because, well, because I feel invisible.

Next week the doctors are going to try an experimental surgery to take a crack at trying a repair to re-route some of my brain signals.  To help curb some of what is jumping from my brain, down my spine and into my legs.  It's all just a "let's see what happens" type of thing.  My doctor is very much "we'll fix you" or hopefully it will.  It's a bit conveyor belt-ish feeling.  I don't know.  I'm feeling uncertain right now.  I'm in so much pain.  I'm exhausted.  I'm feeling alone.  And I'm feeling like the girl that needs to go in for more repairs.  Sometimes I miss my old friends, miss having a life and friends and a social life.  But really, I just miss being free.  Not thinking so much about this.  Maybe with enough of this writing, enough of stammering these things out of my head and onto this blinking cursor - it will let me rest.  Maybe not sleep, but at least have a more restful mind while I'm lying alone in the dark.

Maybe it's just down to me to fix me.

When you try your best but you don't succeed

When you get what you want but no what you need

When you feel so tired but you can't sleep

Stuck in reverse

And the tears come streaming down your face

When you lose something you can't replace

When you love someone but it goes to waste

Could it be worse?

Lights will guide you home

And ignite in your bones

And I will try to fix you

Coldplay - Fix You

Overwhelmed

I am officially overwhelmed.  I'm trying desperately to be a duck though.  I'd rather be a dolphin, wild and free.  Skimming the ocean, leaping, frolicking, free in movement and time.  But really, perhaps that duck is quite appropriate.  The duck is right for me.  After all, Q and I spend many happy hours when mama shuffle the stroller along to the duck pond to toss bread to the duckies.  They flock around us, happily quacking and shuffling to get to the front of the line.  I smile alternating watching Q eat the bread and while tossing the choicest pieces of bread to any injured and limping ducks that come along.  Once we have gone through our bread we watched the ducks take off for the water.  You think it's hilarious how they will get back in.  Some with their overstuffed bellies waddle back down and plop themselves back into the water, some walk back with a merry little jaunt - a sort of happy step from the spoils of the picnic I've provided.  Still others are late to the party and only get a few scraps or none at all, though I wish I had an unending supply for my friends, and these ones take back off, sometimes flying into the sky, arcing around until they make a splash landing.  We sit and watch the ducks gliding along serenely, up and down the water.  Smooth, calm and  gentle.  They never look hurried or harried.  Just gentle or smooth or elegant.  Whatever the word.  It's just, not crazy.  But underneath the water, those little legs are going like crazy.  Sometimes very fast, sometimes leisurely, sometimes just the one or the other to adjust for the current - but they are always paddling - unless they want to go downstream.

So.  I am overwhelmed.  Insurance.  Doctors.  Procedures.  Pain.  Insomnia.  Physical therapy.  Anxiety.  Sadness.  Worry.  Fear.  Money stress because the damn LTD and SSD don't want to pay up - invisible diseases are easy to shove away and push away - they don't count.  Try to keep up.  Writing out form after form of what is wrong with me.  Nothing like continually stating all of your short coming.  I feel like it would be easier to just get naked, strap a sandwich board to myself and have it read "I'm disabled, I know to you I look fine, go ahead, hiss, spit and judge away".  There's so much more.  Just so much more.  Just so much I'm overwhelmed about.  And I'm told to relax and not stress so much, not worry too much.  But really.  That's like saying, "hey don't look over there".  You're going to whip around in your seat and stare across the room to see what you're not suppose to be looking over there at.

So, people don't want me to worry.  They don't want me to stress.  They think I'm cracking up.  They think it's all getting to me.  That I need to be stronger.  That I shouldn't let it get to me.  That I need to love me, because if I don't love me, I can't embrace the love from everyone that loves me.  That I need to remember to still feel the joy in life.  To let myself feel the joy.  That it's ok to feel joy.  That even though I'm saddled with this shitty disease - I didn't do it to myself.  I didn't do it to myself, I didn't do it to myself, I didn't do it to myself.

I don't know how to do these things.  I don't know how to sort all of these things out right now.  I have all of these things swirling in my head.  So what do I do?  I'll be a duck.  I'll be calm, serene and collected to the outside world.  But I'll paddle like crazy to myself.  I'll paddle like crazy and paddle like crazy below the surface until I can take a break.  And when it gets to be too much, I'll let myself float downstream for a bit and just take in the views.

And I am, over-whelmed, by you
Am, over come, with joy
You've, taken me higher, and shown me what love can do
Where would I go, or be, without you

Overwhelmed - Tim McMorris

Blood

Later this month I travel back to the Cleveland Clinic because I'm getting a surgical procedure in attempts to help with my my pain and to control this downward slide that my RSD has been on.  Honestly - I'd rather get in my car and drive anywhere in the world other than Cleveland.  I don't want to.  We've jumped through hoops to get this approved and to get things set up, and nothing else is working and I have been in such pain - this winter has been the worst in, well, years really.  But still.  I don't want to do.

Why then?  Why not?  Or why do it?  I get both questions from the two people I have actually voiced these feelings to.  I don't want to because in the past bit of time, the doctors have done an excellent job of butchering and screwing up things.  Granted, not the CC docs, they have been great - but the other shoes gonna drop at some point right?  Ok, maybe it won't.  But, I just am worried.  You're not suppose to get surgery when you have RSD.  Incisions are bad idea for RSD peeps.  Invasive stuff gives your body the idea that "hey, let's march over here and start causing problems.  We should maybe think about giving the old 1-2 RSD punch here!".  So, yeah, that's never a good thing.  Not to mention the recovery time.  Or the feelings that, I'm tired of having people eff with me!

Yes, I'm just going to put that one out there.  I'm tired of feeling like a flipping guinea pig.  I'm tired of it.  I want to be left alone.  I want to feel at least slightly like a 34 year old and less like a 94 year old.  So, the idea of a procedure to be followed by another procedure has me feeling - honestly 1) scared 2) like hobbling in the other direction 3) like throwing a tantrum and revising this whole "we agree on this" plan because do we really?

So why do it?  Ok, here's why.  Because I'm rapidly running out of options and I'm only seeming to get worse.  My pain levels are getting a lot worse - and thanks to that horrid cow that can't hacking away at my arms at the hospital - the RSD is no longer localized to my legs- it's also in my arms.  My drugs are all at the upper limits.  I've been reminded that there are "no long term studies as to what these drugs do to your system in the long run, nor at these levels" (SUPER awesome) and given my young age that this disease set in - I've been on them for a very, very long time already.  So basically- something has got to give.  There has to be a change.  Short of me going to a buddist temple and learning some sort of art form mental kung fu stuff, or some amazing medical break through (ha!), this is it for me right now.  I keep hoping - but I have got to face facts.  Me buying a ticket to fly to the moon on vacation is going to happen sooner than what I need to happen with the medical community and RSD research.  So, I have to swallow down what's worrying my mind and hope that this helps.

And on top of that- keep fighting my insurance companies.  They by the way - are SUCH CROOKS.  But that is a post for another day.  Because I don't need to have my head completely spout right off my neck like some sort of wicked Pez dispenser gone wrong.  But seriously- such shitty, shitty people to deal with.  They are scum, scum of the earth.  

and she'll wake up in a cold sweat on the floor

next to a family portrait drawn when you were

four

and beside a jar of two cent coins that are no

 good no more

she'll lay it aside

Blood - Middle East

Girl on the flying trapeze

Sitting in the car at a red light, I looked across the way to see a small girl on the swings at the park, her legs pumping furiously, bright pink scarf trailing behind her and an expression of joy on her face.  I immediately was transported back in time to happy childhood memories spent on the swingset at my family home.  That was my place of pure joy.

In the summers I would head down to swing set armed with a drink, a snack, book, some music and spend most of the day there.  I would listen to music and daydream about who I wanted to be, what I wanted to do with my life, where I wanted to travel, my hopes and dreams.  My cat - Miss Priss - would hop into my lap often times and sit there happily in my lap while I would swing.  She would pur and knead my quads for awhile and then settle in for a nap.  After she woud tire, she would stand up, stretch and then gracefully jump from my lap while the swing was arced up and towards the bushes.  I would take the time to stand up, stretch and pick wild raspberries from the bushes surrounding our swing set with my cat weaving in and out of my legs.  I would also pick wild flowers - the violets were my favorites.

In fall I would enjoy the cooler weather and the touch-me-not's that were in abundance around the swing set.  I was a beautiful view - I could see the entire hillside changing, going from green to blaze orange, yellow, fire engine red and all the wonderful colors that scream fall.

I would even swing in the winter time, bundled up in my snowsuit, my cheeks would get numb from the cold but there was just something so freeing about the feeling of swinging.  The rhythm of swinging, the back and forth, the cadence, the motion.  It was soothing, it was relaxing, it cleared my mind. It helped me feel free.  I felt alive.  I felt a feeling of joy.  I felt complete joy, complete happiness. It was wonderful.  I miss that feeling.  I miss that feeling of unbridled joy.  I wish I could get that back.  I wish I could be that girl on the swing again.  I wish I could get that feeling back.  

Coda

Things have been silent here.  Not that my mind hasn't been racing...or jumbled.  Not that I haven't thought about writing a million different things.  Not that I haven't been awake until the wee hours of the morning with nothing to keep me company - thus perfect time to write; and by wee hours I mean 3, 4, 5 AM.  But then I start to think about writing and I stop.  I freeze.  I turn away.

Why.  What is stopping me?  What is holding me back.  Fear I suppose.  Fear that if I actually put these thoughts down then they are real.  Fear that if they are out there on the big scary web then they will be read and then known by all.  But then, really, no one is reading this I think.  Even my husband had to stop reading.  It depressed him.  It made him scared to know how bad it is.  He knows, but I honestly don't think anyone can truly, truly know what it's like to deal with this monster known as RSD/CRPS unless you have it.  And, well, it's not a feel good blog.  I wish it was.  I wish I was one of those bloggers who was all sugar and sparkles and light about the shit hand she's been dealt, but I'm not.  At least maybe I'm not there yet.

The past 16 months in particular have been the cruelest I think.  Why?  Because they have been tinged with both the happiest and most joyful I've ever known - the heart bursting, sheer lung bursting happiness imaginable - and the lowest, most deep down, dark black heart wrenching, not sure if I can see it through the day, not sure if I can make it through another torture filled, pain filled night.

See, I'm a mom.  I am a blessed and proud mama.  That's right.  I'm a mama and I'm so proud of my amazing daughter.  She is the joy of my life.  She is the reason I haven't given in to this beast in the past 16 months.  I had an amazing pregnancy- the disease took a vacation, took a hike and left me alone for 40+ blessed weeks!  Heaven I tell you!!  Delivery was wonderful and I had this new person in my life! I was in love!!!  Then, things started to slide.  I had some of the symptoms start to come back, but nothing awful...but then I got mastitis and my OB's didn't listen - I tried to get them to listen to me - because I know my body well - and they patted me on the head, told me that not all women can breastfeed, that it can hurt and people aren't used to that and barely glanced at me.  Long story short, they didn't listen and I went septic after they brushed me off but my lactation consult went ballistic and helped me and fought for me.  Hospitalized away from my baby....awful.   IV's running in me, feeling on death's door...I don't really remember a lot of a few months there.  It's funny because there are pics were I would throw a shirt on, smile and then promptly rip off said shirt and cry my eyes out - but people look at the photo and say how great I look - story of my life.  I'm actually a week off from being hospitalized for being septic...and I knew I was heading south - but I just don't show illness.  Shit luck for me huh?  But here's the thing - I have gotten some really crap medical care- people just jabbing away at me, not listening, telling me things aren't as bad as they are....  And I'm so tired of it.

Why am I still letting people jab at me?  Why am I dragging myself off the floor?  Why do I hide my tears until I'm in the shower and you can't tell?  Here's why.  Because I love my daughter more than anything in the world.  Because I've read enough blogs to know that, well, if I killed myself because I couldn't cope with the pain - my husband would ache and mourn, but would most likely find another mate.  My dogs would be well taken care of.  My parents would miss me but understand, on some level I think, because they are adults and get the pain levels - at least my mom does.  She saw how my grandfather suffered through pain from his WWII injuries and then his cancer.  That really just leaves my daughter - because I've lost really all of my friendships that I had because of this disease (did I mention how isolating it is?).  My daughter would not understand.  No matter what age she grows to be.  She would most likely never understand why her mama abandoned her.  She would not understan why I didn't fight to stay with her.  She wouldn't have any memories of me either at this age.  She wouldn't replace me.  She might have another mother figure in her life, but she wouldn't have another mother, not in the way my husband might get another mate.  And that is the cold hard fact of why I fight every day to say (blink over the next part if bad language offends you) FUCK YOU RSD YOU DON'T OWN ME!!!  I'm a prison of war here.  I'm trapped in a body that treats me like shit.  I look fine fine but I'm not.  But for my daughter I fight.  Do not misinterpret this.  I adore my husband.  He is my rock, the love of my life, my best friend.  But I know he couldn't soldier on without me.  I know he's so charming and wonderful that he would be ok without me.  My daughter - my daughter keeps me fighting those demons that whisper in my ear, when the flames of pain lick my skin and scorch my soul - when I'm screaming to get out of this hell that is my shell form on earth - I look into her face that is experiencing pure joy, that is enthralled with watching a bird swooping on a breeze or laughing at our dogs playing - and I push back.  I swallow it down.  I fight back.  I use what I learned as a skater.  I compartmentalize the pain.  I laugh with her.  I follow her joy and try to lose myself in her.

Others think I'm fine.  Others think because I can laugh with her, smile at her delight that I am carefree to.  I also say go to hell if only you knew to them.

It's amazing.  I feel better.  This was cathartic.  This is a jumble.  So what if no one reads this.  I know it is here.  And my spirit is lighter for having getting it off my head and heart.  Sometimes it's about not carrying around so much.  It's the getting it out that's half the battle.

As for the title Coda - it's actually an instrumental song...from the movie "The Big Year".  I fought and fought my husband on watching that movie.  "Who wants to sit and watch a movie about bird watching?" I snapped and whined like a brat b/c I was hurting and in a bad mood and frustrated - I wasn't going to be please.  But I sat..and I ended up liking loving the movie.  It has an amazing message...I'm all about the message.  I wish I could wrap my head around clearer writing like back in my former day - but my meds mess with my thought process among other things...  oh well.  Regardless.  The instrumental piece Coda just makes me happy.  It's a lovely little piece....  If I could still dance and skip around...I totally would.

War Horse

Christmas Day my husband and I settled in with big fluffy flakes falling outside and after a day full of Christmas themed movies, my husband found the latest release on Showtime and turned it on.  I immediately cuddled into my soft blanket and jammies, saw what it was and promptly begged him to turn it to Christmas movies again.  I really didn't want to watch this movie.  I really wanted to try to stay in a happy mood.  I begged him to watch National Lampoons Christmas Vacation for the twentieth time that day.  No, it wasn't an action movie or the latest sci-fi movie.  It was the movie "War Horse".  Strange?  No, I don't have anything against animals.  I love them.  I adore.  I actually prefer animals to people, minus my family and few close friends.  A very few.  So why was I so unwilling to watch the movie?  Because, because I knew of what I would have to go through.  And because I am already so tired.

I hate seeing animals or children in pain.  I abhor it.  Even though it's a movie.  Even though, as my husband argues, 'you know it will have a happy ending'.  I hate it because it's all too real.  I hate it because I feel enough pain to last me a lifetime.  I hate it because I'm already in enough pain, I don't need to see others in pain and not be able to help them either.  I'm in so much pain.  So much pain that I'm drowning in it.  Suffocating in it.  Dying from it little by little, day by day.  And I don't need to have something else where I can't help the pain, can't help change the course. Can't help make it better.  Only sit and watch.  Be passive.  Be along for the ride.

My husband sat with the remote and tried to cajole me into good spirits as we watched the movie move along and WWII loomed in front of us.  As I flinched and tears continued to fill my eyes, he reminded me that this film had accolades galore and that, again, it would have a happy outcome.  I nodded and tried to keep passive attention while chanting in my head "this will have a happy ending, this will have a happy ending" but it was having little help with the tears in my eyes and the pounding in my chest.

I finally reached the limit and grabbed the remote out my husbands hands when I could no longer separate myself from the horse.  The enemy forces were moving in and the troops were retreating quickly.  In effort to let the horse have a chance at freedom, to get out of the living hell, the soldier unharness the horse and tells him to run free, to get the hell out of there.  But then a giant hulking tank lumbers onto the scene and the horse starts to get boxed in.  There are the giant earth mounds that are making barriers from the horse running free.  He is finally able to vault up and over the tank but then as he bolts and run, he hits the saw horses and miles and miles and barbed wire and gets tangled in and he tries to run but finally gets so caught up that he gets thrown back onto his back and is trapped and entangled.

My chest constricted, hot tears spilled down my cheeks and I just knew that in my last life, I was that horse.  You know those questions that you get asked in magazine quizes and when you were a kid "if you could be any animal, what would it be", well, in my past life, I was a war horse.  I was on that hellish battlefield.  I was part of the pair of horses dragging that damn munitions around.  I just don't know if I'm the horse that makes it miraculously out of the war alive to live out their days in the tranquil pastures and find life again in peace.  Or if I'm the horse that just can't make it.  The horse with the ankle that just can't be fixed, that just isn't right, that finally is too far gone and finally dies on the field of battle.  Leaving behind their beloved.  Their partner.

So back to the happy holiday movie we went.  And that helped.  But not when it was the wee hours of the morning.  When I couldn't sleep.  When I was in pain.  When I alternated between being curled in a ball stretched out trying to hover above the mattress and not actual touch anything.  During that time, the only images that I could think about were the horror images of that poor and beautiful creature being hunted down, tortured, chased to the ends of the earth and entangled in barbed wire.  The pain and haunting in his eyes.  It tortured me.

I can't help but feel that I am that horse.  That I am wrapped in invisible barbed wire, cloaked in daggars of pain and trapped in the hell for eternity.  Each time I think that I understand things, I'm dealt a new curve and thrown down.  I don't understand how I am suppose to deal or get better when I am constantly pushed down, pulled under and run over.  Maybe some day, I can start to believe that I will be the horse that makes it out alive.  Maybe I can still believe in a happy story.

Full of broken thoughts

I cannot repair

Beneath the stains of time

The feelings disappear

You are someone else

I am still right here

What have I become

My sweetest friend

Everyone I know

Goes away in the end

And you could have it all

My empire of dirt

I will let you down

I will make you hurt

~Hurt 

Nine Inch Nails

Shake it Out

2013.  So far I have to say, this is not looking like my year.  Although, seeing that it is so early in the year, I'm hoping that there is just plenty of time for a turn around, a righting of the ship, the stars to re-align, the fates to smile upon me again - all of that happy stuff.  I like happy endings, happy stories, believing in happy things.  Silly me.  Silly, silly me.  I still would like to believe in that fairy tale stuff.  What's that again, oh yes.  Happy endings, people doing the honorable thing, the good guy winning, yes, yes, that stuff, the fairy tale stuff.  Ahh, sarcasm and depression, it appears that 2013 is going to be filled with it.  Weeeee.

I've been a girl who has played by the rules her entire life.  I've worked hard since I was a little girl at her sport and at school.  Worked and held down a job since I was 12.   I have wonderful relationships with my family.  I respect and love my grandparents and all elderly as a matter of fact (oh the youth, don't get me started on what we have done with our entitled "everyone wins a ribbon" culture), never broke curfew as a teen, never even went to a party in high school because I was too focused on school and my sport.  Really, I followed all of the rules.  And I was happy to do it.  So why, oh why am I being punished with this cruel disease?  Why am I being tortured and punished day in and day out like a baby bunny in a viscous ferral cats paws?  Being kept just alive enough to be bled out some more, but not alive enough to escape.

I'm dealing with crooked companies that are trying to dodge duties, denials to get procedures done, red tape galore and a million other problems.  My husband told me the other night "the hotter the fire the strong the steel" - well, I must be bulletproof.  I wish I was.  But I feel like I'm just getting more fragile by this treatment and this bullying rather than stronger as a result.  My blood pressure is spiking from pain and from stress now.   I can't see straight from the strain of it all.  I don't understand why this is happening.  I have some telling me to turn this over to God and that he will guide us through this.  I have others telling me that I have to fight harder.  I have others still that still just tell me that I "look good"....  Oh that damnable "you look good" curse.  Yes, yes.  If you don't look closely at me, you won't notice that I flinch if you get too near me, that my eyes are tinged with pain and half-dead looking, that I'm a shadow of who I was.  That I am decaying and not in a pretty way right before my eyes, but yes, yes, if you don't look close, if you don't really notice me, if you just look at a surface glance really quickly, then yes, I look good.

I need to keep my strength up.  I need to find it in myself to breathe deeply.  To calm my heartbeat before I have a stroke.  To try to keep my migraines down to under 3 a week.  To find a a sense of calm in knowing that if nothing else, I will get my story out - so that others can know that they are not alone. They are not the only ones going through this.  I need to stay strong.  It's the continued story of being the girl lit of fire from within, lava in place of blood, bones breaking and body falling apart.  I feel as though I'm  weighted down with anchors, strapped to me and I am 20 feet under the surface.  My lungs are burning - but I'm not going to give up yet.  I'm not going to just sink to the bottom and surrender yet.  I'm still going to try to swim and kick for the surface.  Even though it's torture, even though it hurts so badly, I'm going to try to find my way to the surface and breathe.

So, happy new year.  Bear with me.  Be kind and whatever you do, don't tell me "but, you look good"... because I'll crack you in the shins with my cane should you.

And all of the ghouls come out to play

And every demon wants his pound of flesh 

But I like to keep some things to myself

I like to keep my issues strong

It's always darkest before the dawn

Shake it off , shake it off, shake it off

And it's hard to dance with the devil on your back

 So shake him off

Shake it Off

Florence and the Machine