Radio Static

I've got a lot of information that I've been trying to digest, absorb, think over and turn over in my mind over the past month.  There has been many changes, some abrupt, some major and some painful.  I'm hopeful that I am just beginning to start out on the right path.  I'm a long way off from being where I need to be, but perhaps my big toe has nudged the line that is the start to that long road that will take me to where I need to get to - at peace with my body.  Not in SO much pain all of the time.  Granted, I will always be in pain, but it's just been such a continued and drastic downhill slide that it must stop.  So, I'm hopeful that I'm figuring out the right measures to take.

Tomorrow we head back out to the CC for our monthly visit.  It's getting to where I know that trip like the back of my palm.  It's at once annoying because of the cost and time and then again strangely calming and relaxing.  It gives the husband and myself time to talk just one-on-one and really hit the range of topics- from serious to silly to family to life and our hopes and dreams and everything in between.  We listen to music, we make stops when I need a break from the car vibrations or to stretch my legs - or when we have the babe for a bottle or a diaper change, and just really let the world be all about the three of us.  No phones buzzing in.  Not him rushing off to work, no text messages that interrupt every (the timing is insane!) conversation we try to have!  So, I'm going to settle back into the passenger seat, take charge of the radio and enjoy our day out tomorrow and hope for some continued good information from the doctors tomorrow (and a short wait in once we get there!).

In the meantime, I'm hoping that tonight, maybe I can relax.  I've been having such bad headaches to top it off lately that I can't even stand to listen to music softly as I fall asleep - which is completely unlike me.  I always like to have something on in the background - something to match my mood.  It's as though I'm setting the soundtrack to my life.  Lately with all of the thoughts swimming in my head and migraines pounding behind my eyes - it's been more radio static than music!

Here's to hoping for more information, good answers and steps towards a better and brighter future!!  And hopefully some more music to listen to soon. 

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

have you ever seen the rain?

The stormy days didn't use to bother me.  I honestly used to like the thunder and lightning, the cloudy skies and rain dripping down on the leaves, lashing against the windows.  I found it comforting to fall asleep to the sound of the raindrops and the rumbles and the pleasant sounds that come with storms and rainfall.  Then I got RSD.  After that set in, rain and thunder and storm systems took on a whole new meaning.  I became an 80+ year old woman, complaining of the upcoming rain; how I could feel in in my joints.  How I became so stiff, unable to bend or move.  The thunder sending waves of pain washing over my body.  The sound of rain like tiny needles pricking my skin.  I no longer was lulled into a deep sleep, rather I was wracked with pain and kept awake all night and tortured through out the day by these changes in the weather.

I wish I could just enjoy the changes in the weather.  Lord knows where we live we get enough cloudy, rainy and stormy days.  I don't know what climate would be best for me, but I know that that this one isn't it.  I'm achy, I'm sore and I've aged so much more in the past year than just the one year that I've lived.  I'm living in dog years it would seem.  While maybe only one year has ticked by on the calendar, I feel as though more like 7-10 have been stripped off the clock for my body.  I feel so much older, more run down, less spry and certainly like things aren't going to work as well or for as long.

I just wonder.  When will other things start to wear me down.  When will other little things start to add up.  I keep hoping for a turn around.  Yet I find myself doing things that I never thought I'd do, at least not for another 30+ years.   I'm chopping vegetables in the kitchen sitting down.  Not because I'm lazy - but because I literally can not handle being on my feet any more.  I am just weary.  And it's  the little things that are wearing me out.  That are exhausting me.   Like writing on my computer right now.  I can barely keep my eyes open.  So, I'm not going to any longer.

Good night, sweet dreams- and good luck.

Someone told me long ago

there's a calm before the storm,

I know

There's been calm for some time.

Have you Ever seen the rain - Credence Clearwater Revival

the new Bohemian

I'm finding that I am trying very hard to get adjusted to this new way of life.  When I try to explain this to people, many assume that it has to do with my new role as a mommy and how that plays into my life as mommy, wife and self.  But no, that has nothing to do with it.  While I am a new mommy - I have known that I wanted to be a mommy my entire life.  While many things that I thought would turn out differently for me and have not- this one has.  I am a wonderful mommy; if I do say so myself!  I love being a mommy and it feels like she has been a part of me for my entire life.  That hasn't been a change for me at all.

The change that I'm referring to is what else, the changes brought on by the monster itself.  The RSD is causing these weird feelings and changes and I'm having to get used to myself all over again.  I had thought that I was used to the pain patterns, used to the effects that RSD had on my body, used to the levels and amounts and frequency of pain and the weird side effects (like the wonderful feeling of blood dripping down my leg when there really isn't any, or the feeling of an electric eel wriggling and squirming and fighting to escape from under my skin).  Just when I thought I was accustomed to the oddities, my disease has ramped up and there are all sorts of new changes in how I feel, see, hear and view the world.  My pain is on a completely different level than I remember it being in the past decade really.  There is a buzzing and I humming that comes over my body almost - like I'm going to have a seizure almost and I know that it means that I'm going to be extra stumbly and weak and to be super careful.  No favorite glass cups or mugs.  Minimal lifting of my little girl.  Lot's of tummy and floor time with her.   I try to examine how the feelings in my body are shifting and changing - try to identify these every shifting patterns so that I can maybe start to see what is going on.  Maybe start to recognize them for what they are and can develop coping mechanisms, other than ways to cry without people noticing.

I'm trying to find ways to make myself feel better.  I'm trying to figure out how to heal and make time to get well.  But it's hard.  There aren't enough hours in the day.  I wake up early and I want to have enough time to snuggle my daughter and changer her diaper and dress her for the day before I have to hand her off to her dad because I have to get ready for work.  I fly off to work, plow through the 5 hours there, whirl back home, take on my telecommuting schedule and baby duty, for a few hours until I can focus on just my little girl, then it's bedtime between 7-8 and then by that time, I manage to eat a little something and I'm ready to fall on my face.  No time for exercise, PT, taking care of me.  There is no time for me.  I don't want to sacrifice any of my time with my little girl- I have to give up enough of that as it is.  It's just.  It's so hard.  So, I sit and I type on my blog, and I daydream about starting my own photography company.  I really think that I could do it.  I love taking photos, I don't feel handicapped when I do that, and I really do think that I have a talent and an eye for it.  I just need a little more time to put together a website and get a few more people for my portfolio.  I know that I would have to start small, but I just know I could do it.  I know that there are people out there that would love to get there pictures taken by me.  I know it.  I just have to make it happen.   Anything to not be chained to a desk and be in charge of my own schedule and maximize my time with my little girl.

And speaking of getting used to these weird pains, there are more for me to get used to right now, and they are in my hands.  I feel like I grabbed a cactus plants with my hands and just squeezed away at it.  I wish my hands wouldn't get into the action - I need to be able to take photos - and type!

Is this the real life?

Is this just fantasy?

Caught in a landslide...

No escape from reality

Open your eyes, look up to the skies and see....

Bohemian Rhapsody - Queen

Help!

One of the things that worries my mind the most is the, presumably, impending loss of independence.  While I have been amazingly fortunate - or as much as one can get with RSD - I know that the sands in my hourglass are slipping through and that eventually its going to catch up with me.  Hopefully it won't for a long time to come yet.  And hopefully there will be more answers to come in the future that will make it not a permanent issue, but the plain fact of the matter is that I will and have already started to notice a loss of my independence.

Things that used to be so easy for me have gotten so much more difficult.  Shopping at the grocery store, getting up from a chair, navigating a crowded sidewalk - all of these things take a major mental pep talk to myself and concentration in a way that I would have never imagined myself having to do.  At least not in my thirties.  Maybe in my eighties yes.  But my thirties.  No, I did not foresee myself having to give myself a pep talk to make it through a grocery store for a handfull of much needed items, all the while I'm in there gripping my shopping cart so hard that my knuckles turn white, smiling at strangers with my teeth clenched the entire time in my head screaming "please don't get near me, don't hit me with your cart, watch where your going!!!!"  By the time I make it back out to my car I'm exhausted and it's laughable.  It was a freaking trip to the grocery store. And yet, I feel like, wow, look at what I accomplished!

I'm torn between being proud of myself for still being able to get all of these things done on my own, still being able to navigate a busy store, a crowded campus and slog away at work, and the other half of me thinks that I can feel myself winding down like a toy that is slowly running out of its batteries.  My muscles are spasming, my body is unhappy and I know that I want to exercise and try to get off this baby weight and see if that helps...but when?  Between being in so much pain and getting up early, rushing to work, rushing home, juggling work and baby, and then soaking up every second with my girl- by the time her bedtime rolls around - I'm exhausted.  It's all I can do to get a few things done and just fall on my face.  There isn't time to take care of me.  I keep hearing how "important" it is to take care of myself -but when that is suppose to magically happen and take place is beyond me.  There isn't time in the day and I can't sacrifice any of the few hours left for sleeping as I feel like a zombie as it is.  If I'm going to stick to my 4 F's diet and stay off the caffeine, I've got to keep what little hours of sleep I've got.

So, I guess I need help trying to figure this out.  I guess I'm going to have to get better adjusted to the idea that I'm going to need more not less help in the future.  Which is a hard pill for me to swallow - as someone that has always liked to be so independent and self sufficient.  What I have to realize is that it won't do me any good to not ask for help and do things all by myself just to prove I can - and then hurt myself worse- because that will only detract from my abilities to be the best mommy that I can be.  I have to keep that at the forefront of my mind when I find myself wanting to dig my heels in.

Still.  I just wish I could figure out how to balance this better.  Maybe it will get easier.  It's only been a week.  It's just been so hard on my body.  The earlier hours.  The sitting in an office chair.  The clocking in.  And it's only going to get worse.  And I feel so much worse than I did last week.  Maybe I'll hear some good news, some hopeful ideas next week.  And maybe I'll get some other things figured out.  I just.  I hate feeling like everything is out of my control.  I hate feeling so vulnerable.  I hate feeling so weak.

And now my life has changed in oh so many ways

My independence seems to vanish in the haze.

But every now and then, I feel so insecure,

I know that I just need you now like I've never done before.

Help! - The Beatles

skaters waltz

The cold air is biting against my cheeks.  I shiver slightly and flex my feet in my boots, feeling my laces bite into my landing foot ever so slightly. I knew I should have laced them up again, I always like to re-lace my landing foot skate an extra time or two before taking the ice, but I was in such a rush.  The skater ahead of me is almost done with her program.  I grasp onto the dasher boards and proceed to do some deep knee bends to keep legs limber and my nerves in check.  It feels like forever since I've competed.  I try to push these silly thoughts out of my head and I look around at the crowd and the arena.  I don't recognize it really, although it looks vaguely familiar.  As I switch to hopping up and down lightly at the side of the rink I begin to wonder if this girls program will ever end.  It feels as if it is taking a lifetime for her to complete her program!  I am ready to get out there!   Finally!  Her music ends and she sweeps into a deep curtsey.  I carefully slip my skateguards off and prepare to step onto the ice when I notice a shifting and an odd sensation....I feel like I'm drifting, but I'm not on the ice yet.  All of a sudden I realize what's happening and I try to stop it.  I fight it.   I cling on with both hands, but it is no use.  I'm waking up from my dream, and as usual lately, it's too soon for me to get out on the ice.

I used to have skating dreams still after my RSD diagnosis and I would skate in my sleep.  I would feel the wind against my face, and I would feel myself as I would "do" layback spins, double loops, ina bauers, all of my favorites maneuvers.  Lately though, if I do happen to dream and remember it, I always wake up too soon.  I get ready to skate.  I'm there, I'm ready to compete.  I feel ready, I'm confident and I'm going through all of the old rituals.  But something always happens so that just before my left skate (always the left skate!) hits the ice, I wake up from my dream and I don't get to go skating.  

Isn't it funny how things go.  But in the same token...I do get to have some wonderful visits in my dreams, even if i don't get to go skating anymore in them.....

unwell

the hardest part of sharing this disease is the sharing.  sometimes i think it would be easier to carry the burdon alone.  i hate seeing my pain reflected back at me.  i hate seeing how my answer of "no, i'm still in pain/ in more pain/not better" causes pools of pain to well up in my loved ones eyes.  i hate the fights that it causes.  i hate that it causes the tides to shift and the oceans that already engulf me to pull me even further out to sea and further away from you.  you can't understand why i can't drag myself into the nearest available lifeboat when one presents itself.

the main problem.  i'm so run down, so exhausted, so damn bone weary from treading water, from fighting my way to the surface, from trying to not drown under the weight of it, that i'm not capable of pulling myself into even the easiest of life boats.  the shore line might be within site.  i might even be in waist deep water, but i'm too tired to realize that i can stand up and walk my way in.  i'm just overwhelmed and tired and doing my best to take care of my first priority, my baby.  i'm so sorry you can't understand why it seems like i'm not doing the obvious things to take care of me.  why you think i'm just throwing in the towel.  i hate that you think that apparently i'm happier to sit upstairs in pain than help make myself feel better.


if the person that loves me most in the world, the person that should know me best in the world thinks i'm apparently happy to let myself just fall apart, happy to just sit in this hell, it makes me wonder what on earth the rest of the world thinks when they look at me.  maybe most people don't even realize the amounts of pain i'm in.  maybe most don't even give a damn.  but the rest - do they also think i'm happier feeling this pain?  do i come off as some sort of a masochist?  or just a machine?  get up, go in, get it done, do your work, don't feel, don't think, just do.

the thing is.  i'm trying to numb myself.  i guess in trying to numb myself, in being overwhelmed, in trying to let go of the pain so I don't get carried away and over the edge with it, i just let go to much maybe?  but what choice did i have really?  i have to be that way.  and i don't feel like i have to explain or justify myself to anyone really.  i really don't think that anyone else that i know could endure the pain that i do for more than a few minutes at best.  maybe some could for a few hours...certainly not days, weeks, months, years - a lifetime.

But I'm not crazy, I'm just a little unwell

I know, right now you can't tell

But stay awhile and maybe then you'll see

A different side of me

I'm not crazy, I'm just a little impaired

I know, right now you don't care

But soon enough you're gonna think of me

And how I used to be.....me

Unwell - Matchbox 20

She Don't Want Nobody Near

It's so tiring.  So damn bone wearing to always wear a smile.  To mask the pain.  To play that charade that all is not that bad.  To play that game that that no, it's beating me down.  Social niceties will be the end of me.  People ask questions that don't really want to the know the answers.  I give the answers that I don't really want to give.   I guess we all really lose in the end.

Why do we go through the games?  I wonder what people would think if I answered truthfully.  "How are you feeling today, Sara?"  "Well, my ankle feels as though someone has broken it with a sledgehammer, drained the blood out and then thoughtfully refilled it with gasoline and then lit it on fire.  Once on fire, they pounded it with shards of glass and continued blows from that lovely sledgehammer to make sure the bones were totally pulverized.  Those students yelling in the hallways -yep, those sound waves are actually making me sick to my stomach.  Yeah, no kidding, I want to vomit from just the loud noises they are making out there.  And the thought of another 4 hours and 45 minutes of this makes me want to jump out the window, except we're only on the first floor so a fat lot of good that will do me.  How are you today?"  Some how I don't believe that would go over well.  People like it when they ask with the tilted head of concern (because it always belies more concern when you tilt your head while asking a question) "and how are you feeling today" and purse your lips up a little bit.  It's all some weird and oddly choreographed dance where they ask in the odd manner, and I answer with the "I'm fine" speech done all while through clenched teeth and stiff body language.  Great fun.

Right now I just wish that my knees would unlock.  Ever since I woke up this morning I've had problems with the cartilage getting stuck in the joint and having them all locked up on me.  They just hurt so much and they are stiff and I feel oh so ancient.  But when don't I feel ancient.  It's just an added little something on top of the ankles for tonight.  So, on that note, it's time to rest my weary head.  Maybe I'll have happy dreams tonight.  One can hope.

Well, she don't want no one around

'Cause she don't want anybody to see

What she looks like when she's down

'Cause that's a really sad place to be

She Don't Want Nobody Near -Counting Crows

Hurricane Waters

I'm trying so hard to find my footing, find firm ground.  I'm trying to be strong, trying to take things in stride, trying to do what I know lot's of other people have to march out and do every day.  The problem... I try not to compare myself to other people.  Because that is where it starts to get sticky.  That is where it starts to fall down...that is when my house of cards collapses and I remember just how unlike the rest of the my friends, the world (for the most part) I really I am.  If I let myself start to really look - it's not an apples to apples sort of thing.  I'm not a mom like her going off to work having to leave her baby.  Other mom's I've talked to said that they do their best to not picture their babies while they are away because it makes them sad and teary and they don't want to get upset.  If they can get focused on work, they can zone out.  Well, that works for them, and kudos.  The problem is...that does not work for me.

See, I'm in a world of pain.  And my little girl is what helps me not focus on my pain.  She is what helps me hold on when it hurts so much.  Her smile, her giggle, her need for her mama - is what keeps me grounded, is what keeps my car firmly moving in my lane and not jerking into a concrete barrier because I can't bear this pain anymore.  See, I can't start comparing now can I?  And I can't start sharing, because as good of a friend as most people want to be, hell, as good of a relative as most people want to be - most people do not want to know the deep, down nasty dirty painful truth.  They want to think that it's all frothy and light.  And I wish it were.  So I'll give them that.  I'll let them pretend.  I want to.  I want to pretend.

And I do.  I hold onto my daughter, I hold her close, I breathe in her smell, I snuggle her close and I am absolutely greedy about my time with her - and I will fight for every second I can with her- because I don't get enough. I want more.  Each second, each minute soothes my tortured body and calms my mind.  My heart sighs and I can let myself relax with her...we melt into one another as I hum softly and I watch her enjoy her bottle.  I forget that I had to battle my demons to make it home safely to her.  But I have to keep her face at the forefront of my mind.  I have to make sure that I don't make mistakes.

You're caught searching for an answer

When you're stuck in the middle

Of a place that you don't belong

When you start to lose sight of what's right and wrong

Hurricane Waters - Citizen Cope

Stand by Me

When it's late at night, and the pain is raging - I sit rocking away in my chair surfing the internet, looking for hope.  Too often though, I'm finding research and news that only frightens me, confirms my fears and worries me to my core.  I wish I was one of the lucky ones.  That this stupid disease was caught in time to beat back.  I read about suicide rates, and how if those don't get you - the heart attacks and strokes and aneurysms will.  It makes sense.  When I'm in pain I feel my heart rate start to go up, I feel my blood start to pound - I feel the shift in my body and while I know that it's happening and I know that it's ramping up, I also know that I can only control it to a point.  I try to stay as comfortable as possible.  I try to relax, I try to image the pain like a wave and ride it to shore rather than fight it in the ocean.  But all the imagery and coping mechanisms aside, I'm also well aware that this is doing irreparable damage to my heart.  I know that it's not good.  I can tell based on my pain what my blood pressure reading is going to be at the doctors office usually.  If it's a low pain day- I have a great reading - but as soon as the pain starts creeping up - so do my readings.

I am ashamed to say that with my extended pain and sleepless nights my tendencies to want to lash out and swat at people rise as well.  If you take a swipe at me, I'm going to go guns blazing at you.  If you hurt me, even in the past - well, I'm hurting now and I'll hurt you now thanks so much.  I do not like that side of me that RSD brings about.  I do not like being a spiteful person.  I don't want to be angry.  I'm generally a happy person and someone that can turn the other cheek or just brush things off.  But something just builds up - and then after so much unrelenting pain - it's like it bubbles and there is a pressure valve and I can not stop it.  And while for  a brief moment I might feel better - ultimately I do not feel better.  I feel like I let myself down.  I am better than petty swipes.  Stupid gossip.  That is not me.  That is me giving into the ugliness of this pain, this monster that I'm fighting.

So, I sit and I rock and I worry.  I worry about losing my ability to walk.  I worry about my ability to provide for my family.  I worry about my ability to shoulder this pain.  I worry about the damage that this is doing to my heart.  And I cry.  Because in the dark no one can see me cry.  But then, just when I think I  can't take it any more- I hear that soft little sigh from across the room and the little sounds as my baby girl shifts and nestles in to get more comfy as she dreams her happy dreams...and I can smile.  I can remember what I have to focus on.  I can remember that my heart swells with pride and love and admiration every time I think of her, look at her, snuggle her.  And I think that yes; I can, I will, I have to continue to fight on.

When the night has come, and the land is dark

And the moon is the only light we see

No, I won't be afraid, oh I won't be afraid

Just as long as you stand, stand by me

Ben E. King - Stand by Me

Don't follow

Sometimes I feel like I've gone down the rabbit hole.  I'm in the hellish underworld and I just wish I knew when I lost my footing.  Well, I take that back.  I know exactly when I lost my footing, I can pinpoint it, and I can still close my eyes and remember the sounds and the feel as my world got flipped the wrong way forever, when my axis got thrown off, when my world started to spin the wrong direction.  I just didn't know it at the time.  I had taken really bad falls before.  I had even had surgery before.  I was no stranger to intense pain, to physical therapy - I had gone through it all.  I was expecting to put in the hard work and to have what always happens, to come out stronger and to be back to my old self again.  Only, I lost myself that day.  While the RSD did not truly get its hooks into me at that moment, it was the surgery to try to correct some of the damage that left me in a waking nightmare, a hell I wasn't able to wake up from.

Thinking back on it.  I know the only way I could have truly done something differently would have been if I had never skated in the first place.  If I had been in another sport, if I had a different passion, then maybe I could have avoided this.  Otherwise, this was a collision with fate that was always going to happen.  It wasn't a lapse in judgement.  It wasn't something stupid that I regret doing.  It wasn't a foolish antic that I can chalk up to being a kid.  I was an athlete training to be better - and I'm paying for it for the rest of my living days.

Sometimes I hate that I have such a high pain tolerance to this day.  I am screaming on the inside.  I am in pain that is making me feel like my heart is going to explode because it starts to race so hard from the pain.  I feel like a race horse that doesn't know how to stop running.  I push myself to keep moving, keep walking, keep going...  I'm scared that if I do not, I will lose it.  I will lose my walking, my independence, my last little bit of self.  I'll slip further along into the blanket of this disease.  I'll give in and give over to it.  I fear most that damn wheelchair.  Scared that I'll become useless and sit dusty in a  corner.  Relegated and forgotten...like a toy that was once shiny, new and wonderful; that is now older, not as interesting and a little bit sad.

It grieves me that with a beautiful baby girl that I adore so much, that the moon and the stars are hung on, that the sun rises on, that I am unable to write a happier post.  I want so badly to be able to gloss over this pain.  I want so badly for it to not be taking over my life.  She is the solace in all the pain.  She is the only thing that keeps me going.  She is what keeps me tethered to the earth.  When I feel myself and my soul pulling away from the earth, wanting to wrench free from this earthly world; hearing the whispers of whats better, she is what keeps my feet planted firmly on the ground.  She is what keeps me nearby.  She is what keeps me from doing stupid and irreversible things.

Hey, I'll just wander my

Own road now

Hey, I can't meet you here tomorrow

Say goodbye don't follow

 Misery so hollow

....

I get so lost and don't 

Know how

And it hurts to care, so I won't now

-Alice in Chains "Don't Follow"

Sweet Disposition

It's funny how some things never change....

I still find hope and strength from the same sources now that I did as a little girl.  Music will set me up to be stronger and bouncing with strength (or weeping and emotional if I make the wrong music selections!).  As I sit gently rocking in my chair, contemplating my upcoming trip to the Cleveland Clinic and what I hope to accomplish while out there, I play my "hopeful" mix on my iTunes account.  One song in particular by The Temper Trap always gets me in a great mood "Sweet Disposition" always makes me feel happy.  It has a happy little beat, the lyrics are enough to make me move and groove "a dream, a laugh, a kiss, a cry....won't stop 'til it's over - til we surrender".  I like that song.  It makes me want to go wake up my husband, give him a big smooch and tell him to throw a bag together, that we're packing up, hitting the road, loading up the dogs, I've got the baby and we're taking off.

I've got a major case of wander lust right now.  I think it has to do with how awful I feel right now.  When my body feels so wrong.  When I hurt so badly - I just want to leave, to get out- to go somewhere else.  I don't want to be here.  I want to hit the reset button.  I want to get out of this town and see if I can find a place that makes me feel better.  That helps soothe me and makes me feel less pain.  When every day becomes hellish and every night becomes a nightmare, well, who wouldn't want to see what else is out there?

Maybe I'm mixing up RSD with a war...it's like an invading army and I'm just trying to get out of the way, trying to run to safety.  Looking to find refuge.  Unfortunately there is no safe zone for me.  This is going to hunt me down no matter where I go.  It's going to follow me and track me....I'm going to fight it though.  And I've got my husband and he's determined, even more than me at this point in my life, that we'll beat this.  He had more fight in him for this now.  He's ready to do battle.  I'm too wounded right now to feel like I can fight.  Luckily he's strong enough that he's ready to carry me.

When I was a little girl I believed in princes and heros and knights in shining armor.  While my husband doesn't ride a giant black horse, nor does he have a shiny crown - he does save me.  When I risk falling into the pit that is RSD, risk letting myself give into the pain - he pulls me away from the edge, he is strong enough to put me over his shoulder and carry me out of the battlefield.  He is strong enough to remind me that this pain isn't forever.  That there will be relief and freedom.  That I can handle this.  That I am stronger than this.  That we can figure this out.  While I do not feel stronger than this now.  While I am not so sure that I can beat this right now, I believe in him, that we can find a way to at least make it better.  So, in a way, my Prince Charming is here, to save me.  It may not be the way 5 year-old me thought it would happen, but that's ok.  There is always room for a re-write.

Sweet disposition

Never too soon

Ohh reckless abandon

Like no ones

Watching you

A moment, a love, a dream, a life

A kiss, a cry, our rights, our wrongs,

So stay there

Cause I'll be coming over

Sweet Disposition - Temper Trap

Someone like you....

I look at photos...I see that girl - and I know she's me.  I used to be that girl.  I used to be strong.  I used to be athletic.  I used to not lay awake all night in pain.  I used to not flinch at the thought of a hug.   The thought of a trip to the grocery store didn't seem like a marathon.  I have nightmares that make me want to stay awake...like a night watchman, waiting out for dawn so that the grips of those hellish dreams don't pull me in.  The squealing car brakes, the whoosh of the air and impact is all to real.  The heat radiating as impact is made and I feel my body being cut in half as steel hits me and I'm severed - my legs ripped free from the rest of my body.  I always wake up the same- choking down a scream, sheets bunched up in hands, sideways on the bed, Emma resting her head on the bed next to mine nuzzling me, letting me know that it's ok, I'm back here, I've landed safely, to breathe again.  But the pain hasn't stopped.  It hasn't gone away.  It still feels like some great metal beast is ripping me apart.  My legs still feel like they are on fire, lit up with gasoline and burning so intense.  I can't stop moving them, the muscle tingle and burn and won't stay still.  I climb back out of bed and into the safety of my glider, open up my computer and hunt down the safety of music, maybe an article, anything to pull me outside of myself.

Trying to live a life during the waking hours is growing harder and harder.  My little girls smile is the only thing that keeps me going.  It's what pushes me to keep moving, to keep going...  Without her, I would not get out of bed.  I don't think I would have made it past January.  It's amazing how far and hard and long I've been able to push this body.  It's screaming and protesting and I just want to rest.  I just want to lay down.  I just want to stop.  I want to freeze time.  But that's not how it works.  It's a treadmill.  You've got to keep running.  You've got to keep producing.  and I'm trying to keep up.  I just wish I didn't feel as though I was standing on the edge of a cliff, balancing but so close toppling over the ledge, down, down, down - arms and legs flailing.

I hate that I feel like I can't tell people how I feel.  The people closest to me it hurts them too much to know how bad off I am.  They can't do anything to help me.  They can't make the pain better.  They can't ease it, they can't shoulder it for me...and unfortunately they can't change the situation to make it any easier on me than it is - so I try to keep it to myself.  And most others are just ignorant, so I just let it go.  I keep it to myself and I just try to shoulder it all.  I try to stay happy around my baby girl- she doesn't need to know about pain and hurt at this age.  So, I let the tears and the pain and the upset out here...and on my message board...and I listen to music and I try to think things over in my head....let them turn over until I think that I can make sense of things....and try to make as much peace with things as possible.

I miss me.  I miss life being a little easier to enjoy.  I adore my baby...I just...wish I wasn't in so much overwhelming pain.  It's the type of pain that threatens to just suck your soul dry.  You try to keep feeding your soul because the pain is so draining - so I drink in my little girls smiles, giggles and snuggles.  I nuzzle my dogs and gaze at the sunshine on our backyard.  I gaze at my husband and think of what a wonder husband and father he is.  I try to really stop and be grateful for each of my blessings..because the rest of the time I'm getting drained and my soul is just emptying so fast -that it would be too easy to give in otherwise.  It would be to easy to turn over to the pain, to give into it.  To I've got to try to stay ahead of it.  To stay on top of it.

I only need

The compass that you gave me

to guide me on

And it's beginning to get to me

That I know more of the stars and the sea

Than I do of what's in your head

~It's beginning to get to me Snow Patrol