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.