Sick and sicker

I feel like crap.  And excited.  I spoke to the intake nurse at the Cleveland Clinic about my upcoming 3-day visit.  She was so kind, nice, helpful...I felt hopeful after talking to her.  It was not a feeling I have been accustomed to when it comes to being seen regarding my RSD.  I am hopeful that they will be able to come up with some new options, treatment plans and ideas to make this more manageable, help make my life have more life in it again.  I have felt as though I have been put through the ringer more than a few times.  I am stretched so thin that I am a gossamer wing on a butterfly.  Touch me and I may crumble.  I don't have the stamina that I once had.  I get crushed by stress and after a day that ran 8 am - 10:30 pm on Friday followed up with work again on Saturday until 1:30 - I woke up Sunday with a nearly text book, completely predictable chest cold, rattling cough.  It feels like there is not only lighter fluid lit up in my leg -but also in my chest too.  My body does not have the stamina that it once had.  It does not have the endurance anymore and I am weary.  And I am just so tired. 

I am hopeful that Cleveland Clinic has some answers for me, some solutions to help me get my life back.  At the same time, I don't want to get my hopes up, I don't want to be let down if they can't get me the results, result or any help that I am so hoping for. 

It's the classic catch 22 - if I don't have hope, what do I have?  But if I have hope and never find it- then the destruction from that isn't good either.

I'm just weary.

Surprised, still.

I keep thinking - it's been eleven years since RSD has taken over my system...you would think that by now I would be accustomed to the strange sensations, feelings, zings, stabs, aches and pains - to name a few feelings - that I feel each and every day.  And yet, each zing that wings its way from the mid-point of my foot up to hip and back down again, each constant throb of tendon that feels as though some rogue fisherman has managed to hook my Achilles and is pulling with all his might to yank the line free, each hot, thick and dripping blood feeling down the outside part of my leg - that is nothing at all never ceases to surprise me.  The sensations take my breath away, a sucker punch to the gut each time.

I hate that on bad pain days, I can tell you the sensations that I'll feel- zingers, pings, lightning bolts, throbbing, bone smashed by hammers....but I have only been able to steel myself so much.  I have only been able to turn my brain off, turn my emotions off so much.  I hunch a bit more at the shoulders, have a little more difficult time catching my breath from the pain, have a difficult time keeping the tears out of my eyes. 

In the end, I'm not sure if I wish I was more adapted to the pain, better able to put everything into a steel box and lock it away.  Or if I am happy that these painful feelings still elicit emotions and feelings in me -because after all, doesn't that make me somewhat human still?  Make me a still at least a little bit....normal?

Be careful what you wish for.

The winters in Ohio brought a pain so severe, so deep and cutting that I honestly wondered if RSD would be what would kill me at a very, very young age.  I had read in many places the high rates of suicide associated with RSD, and while I have always had an extremely high pain tolerance, coupled with my "not one of those easy way out" mindsets; never considered myself one to worry about that little scary statistic.

Our first, and subsequently only, winter in Ohio was one of the biggest tests of my personal endurance, faith in my strength and mental fortitude and realizing that I had to find salvation through whatever means necessary.  The pain was crippling; an all out assault on  my body.  I was wracked in hot lava waves, the slightest touch sending me reeling back.  I could feel the changes in the atmosphere with the accuracy most reserve for kindly octogenarians living in nursing homes, lamenting about their hips and such.  Nothing relieved the pain.  Not even methadone.  Sure, it messed with my mind, reduced me to a blathering idiot that sounded suspiciously like Anna Nicole, but the pain was still there....I just didn't have the mental grasp to care anymore.  I was frightened that if I didn't die from the pain, I would die from offing myself from the pain, or from the crazy drugs I was put on to "cope" with the pain.

After surviving the winter, so began the campaign for better-weather living.  The winter punished me in ways I never experienced.  I could no longer skate.  It made sense then, to look for employment in a better climate.  In the end, we ended up in Ghettoville, which brought a new form of pain, punishment, torture and mental anguish.  I am left wondering if the torture of the winter in Ohio was worse, the same or better than the torture of the maniacal, unsympathetic, heartless witch I work for.  I am now at an institution that lacks in true academic merit, is horribly sub-par to anywhere I have ever worked in my life and defends a woman who bullies, belittles and back stabs like its her job....maybe it is. 

I am sick from stress - stress exacerbates my disease and this stress punishes me to a new level.  I am not currently living.  I am under constant attack - from a twisted little reptile-fan, from my disease and from the strain of trying to keep a happy face on, juggle my medical issues with a job that is constantly making me ill and trying my best to not give up hope that this torture will end soon.  The torture of RSD?  No, not that.  The torture of my job, working for the witch and being stuck in a town that thinks that eye-gauging is an appropriate behavior.

Funny, I hate when those little sage sayings turn out to be so true....be careful what you wish for.  I wished for a job in the south, near my family so that I could have support while fighting my disease, have better weather that was not as cruel and better for me, thus (hoping to have less flare-ups).  Unfortunately, I did get the job, in the south, near my family.  However I work for an institution that was so much better from the outside looking in, working for a twisted, evil Hitler-esque woman, finding that the hurricane/storm season is equally as bad for me as the winters were in Ohio.  While I cherish my time spent with my family - I can't comprehend the horrid and disrespectful way with which I'm treated.  I wished for this location, this job - and now that I have it - it's the very last place on earth I want to be.  I'd take the burning hot torture of weather related pain -the bone cracking, mind numbing, lightning bolt fiery pain any day over this.  Why?  Because Mother Nature is just Mother Nature.  She's nature, she's doing her thing for the seasons, for the cycle of life - not to be cruel, to inflict pain, to show off her untouchable status at an institution that values cruelty.  I feel for that Georgia player - I know how he felt - at the bottom of the pile, having Spikes driving his hands into his face, trying to inflict maximum pain and damage.  I feel that every time I cross the door into my office.

So, yeah....careful what you wish for.

I think I still dream....

I use to have very vivid dreams about skating. I could smell the ice
(yes, ice has a smell to it & I miss it), hear the sound of my blades
cutting into a fresh sheet of ice, feel the cool, moist air rushing
against my cheeks as I sped across the surface once again light on my
blades. I felt strong, powerful and carefree. And then I would wake
up. And I would be cold from my blankets having falling in a puddle
on the floor, my cheeks cool & wet- but from tears, not the air in the
rink. I'm just not sure if they are tears of joy - from feeling the
freedom & life of skating in my sleep; or tears of sorrow, because
part of me know I'll wake up.

I use to have that dream at least twice a month....now, I sleep too
lightly from the painto dream; or too deeply from the medicines to
either remember or dream at all.

I miss skating skating the way you would miss an apendage that's been
cut off. At least before I'd have a reprieve with my "nighttime
skates". I keep hoping the dreams will come back. Afterall, what
would I be left with if I didn't even hope for a dream?

Sent from Sara Grimm Cocolin's iPhone

And the Oscar goes to.....

Some days I feel like I missed my calling.  I should have packed my bags, hitched a ride west and tried my luck in Hollywood.  After all, I have spent the last 14 years of my life living a play - acting out each moment in front of, well, everyone pretty much.  I am the supreme actress.  I wake up and have to bargain with myself to get out of bed. My body screams in protest, my brain yells at me to just stop, to yield, to fall back into the blissful sleep stupid!  And yet, I roll out of bed, my feet pushing down into the floor with each step - feeling as though the bone with shatter, as though our cold hardwood floors have turned into hot lava.  I push on, knowing that if I can keep it up, the adrenaline will kick in soon and help me over come the urge to puke.  As I sit in silence, eating my cereal, rereading a book I've read hundreds of times before, I have to continually stop my hand from reaching down and brushing my ankle...it feels as though I have blood oozing down the outside of my leg.  I know that there is no blood running down the side, I know that when I touch my leg I won't feel blood but I will feel pain from the touch - and yet sometimes I can't help myself. 

Somehow, by the time I get to work, I have numbed my brain enough to the pain to put on that blank smile.  That half chirpy "good morning" and mumble a sorry I'm a little late.  Yes, it's true.  I do tend to run 15 minutes late...but then, I figure that most people given the pain I'm in, would throw themselves down into traffic, beg for morphine, or worse...so I figure 15 with a smile and no complaining is really quite a feat. 

I spend my day focusing on my walk - am I walking without a limp, am I hunched over from the pain?  I smile, reply "great!" when asked how I'm doing...worst case scenario I answer "fine" or "good".  I push on, not asking for favors, refusing the opiates that they suggest would help so much, my pride preventing me from getting a handicap sticker.....

And as I sit here and write this, I wonder why I bother.  Who am I saving?  No one cares that I hurt or don't hurt.  I work in a crass environment.  I have more and more work piled on me - physical demands and comments about my health that cross the line and all I say is "thank you m'am may I have another?". 

I have come to realize that I am not happy with where I am at.  I do not enjoy what I am doing.  I do not find my work fulfilling, my coworkers are not supportive - they sabotage and back-stab, I am supremely frightened that I am killing myself and ruining what is left of my health for a job that, well, I hate.  And for a mission I do not believe in. 

I am starting to realize that I need to make changes.  In the climate we are in, some changes are easier to make than others.  That said, we are not locked into this town (no home ownership for us -thank goodness we saw early on that this town was not where we wanted to put down roots!), I am not going to chain my brain to the job on "off-hours" and I am no longer going to be such an Oscar worthy actress.  I am going to be a little more real.  I am going to be a little more honest and open.

So, excuse if the next time you ask, I might say "Been better, thanks."

Mourning

Mourning is a part of life...as with every life, there must be death.  It has long been an accepted belief that for every death that you encounter, you must journey through the various stages of mourning.  It is natural to feel a loss for the life that is no longer with you, to feel sad and empty.  To feel an aching that is hollow and burns slow in your gut, like you've been sipping on an old scotch.  Sometimes you feel an anger at the loss, an anger either at the person for leaving, at God (if you so believe) for ripping this person out of your life so unceremoniously.  The anger and aching slowly starts to ebb into a soft gentle pain...like rain pattering down on the leaves.  You are able to remember the good without breaking down into tears and wanting to curl up into a tiny ball on the floor.  While you never fully move on from a loss, you are able to carry on.  Able to patch up the hole in your heart and carry the loss with you; always remembering without harping on the past.  The problem is, how do you mourn for a person, a body, when that person you're mourning is you?  How do you try to carry on when you're doing so limping forward, carrying that body on your very back?

I find that I am stuck in the various stages of mourning; and it's odd to think, when I really stop and realize why it is that I am either so angry, frustrated, sad, etc.  My skating was so very much so tied to my identity.  "Oh that's Sara the Skater" was often said of me as I passed along, skate bag bouncing against my leg.   Skating was twined into my identity as though you could put me under a microscope and see a skate wrapped around in my DNA...perhaps it is.  So what do you do when that grace, that ease and flight, that freedom and soaring is replaced with burning pain, the feeling of shattered bones and hot lava, muscles tremors and a pain so intense that you are assured that you have found yourself transported to hell.  All of my life I have been creative, artistic, athletic, exuberant and carefree.  I now find myself crunching numbers, a mindless drone strapped to a desk, no creativity, no movement, no life....living in a tunnel, a mine  just punching a clock using tiny bits of my brain, reporting to a boss that lives with a narrow tiny scope on life.  These are to completely different Sara's - one is not like the other.  It is very much like the HighLife magazine you would see at the doctor's office as a child that you would circle the objects that did not belong in the picture; this Sara that emerged November 1998 doesn't belong with me.  She is not the Sara I know.  She is not the me when I am dreaming, when I am at peace and happy.  She is not the me in my minds eye.

To simply look at me in the mirror, I do look the same for the most part. I still get carded every time. I look very much the same.  But I do not feel the same.  And if you look closely, you will see the scars, the incision lines and some days if its a bad day, you'll see the limp.  Overall, you can't see the internal processes that are going on in my body, the changes and reactions happening that are eating away at the bone, tissue, nerves and structures that support my leg - the misfires that occur deep in my brain, zing down my spinal column and with lightning shoot to my toes and back up again.  It's an awful feeling but especially hard to look everyday in the mirror and see that familiar face, and miss that person.  I am so close but so very far away....It is most difficult on the mornings when I wake up from a dream that I was skating in....when I am free again, jumping - my double loops and layback spins - and then I slowly wake up to find that...no, I am in fact waking up from sleep, and then that I am in fact far from what I was dreaming - and each day takes me further and further from that dream.  I miss that me.  I see myself, and sometimes feel myself and want to will myself to simply skate, to move, to feel the wind rushing across my face.

I guess what I want to say is, I miss me.  I miss Sara.  I guess maybe, I don't want to leave her for dead...I'm that person, clinging to the hope that maybe, just maybe, Sara was taken from me - but may someday return.  I am not myself with all the parts of me.  And I am not all of me.  Just as my ankle has never felt the same - I have never felt the same- except for those dreams at night - there are glimpses when I can remember.....

Power to the people.

I have learned a cruel, hard and very real fact when it comes to diseases, public awareness & the monies funneled towards research - If you are going to fall ill to anything, make sure there is already a celebrity either battling that illness or waving its banner.  What?  Is she joking?  No, I wish I were at least maybe half joking.  In this day and age of viral media, Facebook and internet cafes celebrities have more face time, and subsequent power, than ever before.  Celebrities urge you to vote, to just say no, Just do it, shop at Target and save the environment.  At every checkout stand in America there is a double decker row of magazines just waiting to tell us who has cellulite, who was cheating on who, who looks good sans make-up and who forgot to put panties on before exiting their limo.  You can't get away from the celebrity - and they have capitalized on the "do-good" side of their fame.  And while there are A, B, C and even D list celebrities galore lining up to sign on to "do-gooder" projects, I must admit that while I long to have a brighter light shown on my disease, a greater focus on research and to not have my jaw drop when I happen across someone that actually knows what it is that RSD stands for, I am not about to take the "sloppy seconds" of Hollywood.

While the average person most likely doesn't give it a second thought, I have spent a few odd moments (or maybe more than that) thinking about the diseases that have been brought to the attention of the nation because of someones celebrity.  Michael J. Fox brought Parkinson's to the masses.  Farrah Fawcett fought for funding and to remove the stigma attached to the words anal and cancer.  Lance Armstrong has created an entire brand, bracelet and lifestyle surrounding his testicular cancer (along with fellow testicular cancer survivor Scott Hamilton).  The list goes on and on - celebrities and their health causes.  And while I find it admirable that these people have used their fame for good, their misfortune to benefit the masses, to bring science to the intersection of mass media and social media, I feel like the kid at gym class that is left last, the odd number while the two teams argue over who gets stuck with the loser.  It's a position I am not use to, nor comfortable with, truth be told.  It's undeniable how much good a celebrity could do for my disease.  Not only does it (for no real reason!) validate the disease to the masses, it also pulls on the heart strings and brings in the money, the funding and the "we'll fight this!" mentality to the masses.  However, with most things in life...you have to be oh so careful what you wish for.

I would hate to name names.  I am a believer in karma, incarnation and a "if you don't have anything nice to say, don't say anything at all" kind of gal.  While I do try to adhere to those beliefs, it is not always possible for me to hold my silver tongue, nor is it always good to choke down your words.  I will simply say that a few years ago, there was a woman, famous for her lyrics and dance moves in the early 90's, since famous for her dippy sayings and air-headed behavior on a popular singing competition.  She had more and more bizarre behavior, which even to someone like myself who never watched the show, it became apparent from clips in the media - this woman was on some serious drugs!  No, not the shoot 'em kind - more like the Quaalude's & alcohol kind...as though she and Anna Nicole Smith had a lot in common.  After months, maybe even a year or more, of speculation as to her drug problems she had a "heart-to-heart" with a media outlet.  And that was when I was wished I had been more careful with what I wished for.  She announced that she did not have a drug problem, she was taking medications for her RSD.  Oh Lord!  Please don't represent my people!!  While I had a brush with the methadone that does get prescribed to RSD sufferer's, I still didn't -and to this day stand by my belief - that she in no way suffers from RSD.  Why?  Is it because I'm heartless?  No.  It is because I have an amazing B.S. radar.  And it went off like gang busters for her story. She lamented on and on about the drugs that she "had to take" for her RSD, but she never once tried to educate the public as to what RSD is, how is works, how it affects a person, how it is so misunderstood to this day.  Go onto any RSD board, talk to any RSD patient and you will find these questions and concerns at the top of their list.  She was more concerned with the Hollywood tradition of "CYA" and nothing to do with a real problem.  And for this fact, I no longer feel sorry for her when she gets burned by nearly every comedian, man, woman and child in this country.  She grabbed on to an obscure disease, used it (at least among those that know nothing of the disease) to her advantage and then discarded it.  It's amazing how she has taken the RSD disease and tried it on and off like last season's dress.  I've noticed that, as is common with many a celebrity, she disappeared for a few months, came back a bit more sober, a bit more coherant.  And with that less drugged out, strung out personality, the mention of RSD disappeared.  Her need to use it disappeared, and so did any chance to use this has-been ex-Laker cheerleader turned sappy 90's pop queen status to better millions of suffers in this nation.  For that, I know that another deal was done with the devil.  To use a disease as vicious, as detrimental, as all-consuming and life altering as RSD for your benefit and then move on, is something that only someone with no regard for the suffering of humans.  I don't envy her next life.  As I stated earlier, I am a big believer in karma.  This does not bode well.  Which is why I am able to move on when people are horrible, are black in their core, have malice in their intentions.

So, the next time you read about the poor starlet with the obscure food allergy, the sports start with the odd growth gene factor and subsequent fundraiser - think of me, think of RSD, think of the power of star power.  Just please, please don't think of her.  And that's simply my opinion, Straight Up.

Chemical nation

For some, the chemical dabbling occurs in their teen years.  While there was some of this at random occurrences, my life now revolves somewhat around the chemical nation.  I am always thinking - at least in the back of my mind - when I last took something, when I'll take something again, and you don't want to be around me if I am without.  I am well known to my dispenser of the chemicals - they are surprised if it's just the one drug I pop in for, as in this evening, "Just one tonight?" he said with a bit of surprise in his voice.  Ah, so she copes with drugs.  Well, I suppose in a way, that statement is true.  It certainly isn't a false statement.  I am a slave to my insurance plan, at the mercy of the drug companies and on my knees hoping for a break-through in drug trials. 

Upon the RSD diagnosis, you begin an attack plan - halt the damage that your body is inflicting on itself.  Unfortunately, my disease is not one with a celebrity backer, and as such, there is not a lot of research being devoted strictly to it.  As such, I am at the mercy of MS drugs, lupus drugs, anti-seizure drugs...all sorts of drugs pulled from a variety of diseases and conditions that have strong similarities to mine.  It is a careful math problem.  Add a drug, see if there is an adverse effect, see what other problems are left over and then add a drug for that.  The pain you experience with RSD is very difficult to treat.  As I stair-stepped my way up drugs to treat and address the pain - certain factors worked against me.  The worst factor being - the cold, humidity and storm fronts of the mid-west.  As the winter rolled on, the pain increased and bore down on me like a giant crushing a bug.  It was painful to be awake, just rolling over in the middle of the night and resting my foot against the pillow-top of the mattress would cause me to wake up with a scream caught in my throat.  The sensations that were at first there and simply annoying - the feeling of blood constantly dripping down my leg - morphed and grew into vicious feelings.  I felt as though my bones were cracked and showing through my skin, a giant eel made of lava with razors on its back swan up and down my leg, swirling and whirling - angry and mad.  I watched as my leg changed from a healthy normal flesh colored to a faint blueish tinge, to a cadaver looking leg.  I no longer slept, no longer really ate.  They attempted shooting pain medications directly into the nerves feeding my leg - that would give me relief for roughly 18-24 hours at first, but as the temperatures dropped, so did the amount of time I had relief from the shots.  Finally, exhausted, worn out and ready to grab any life preserver handed me - I accepted a new option from my pain doctor.  I was given an option - either try a pump implant in my spine - which carries major risks for woman that would like to one day have children- or try a simple little pill, Methadone.  I opted for the Methodone.  It was the scariest ride of my life.  I not only frightened myself, but my husband, my mom, and even my boss who called to check on me (and subsequently told me to NOT answer my work cell).  The methodone did nothing to take away the pain.  What the methodone did do is take away my cares about the pain.  I no longer gave a flying monkey about much of anything.  I suddenly found myself having very much in common with Miss Anna Nicole Smith.  I was high as a kite, dippy, trippy and absolutely out of my mind...still in pain - but I couldn't care less.  It crippled me in a new way.  After a very short amount of time, shaking the cobwebs from my brain, I slurred my way through a conversation with the nurse, dropped the phone to the floor and got myself off of methodone.  I don't understand why anyone would ever want to experience that feeling.  Would ever want to maintain that state of mind or being. 

Currently I take a lovely concoction of 18 pills daily - not all at once - but through-out the course of the day.  Sometimes there are additional medicines mixed in depending on if I am experiencing a flare up.  I never dreamed that at twenty-seven years of age, after being forced into an early retirement from a profession and job that I adored, that I would also be at home in a retirement center -call me Sophia Petrillo.  I could feel a weather front moving in, as well as the amount of pills I was taking that were constantly spilling out all over my purse no matter what pill case I tried.  You know it's true love when your hubby tracks down a Coach pill case for you - zippered and secured! - and you couldn't be happier than if it were a diamond tennis bracelet.

I hope that one day I will be able to control this monster within, tame the horrible pain without the use of medication.  While I am hopeful that this is possible, I am aware that stress is killer.  While stress isn't good for anyone - I feel my nerves start to pop and misfire more rapidly as the stress builds.  While I am in my current situation, it would be suicide to attempt no medications.  A strict, well balanced "Four F's Diet", along with minimal stress and optimal climate conditions are critical to trying to go without medications - while staying a productive member of society.  One day, one day.

In the meantime, I shall take my 18-26 pills - wash them down with my mineral water and close my eyes and laugh at all the times my mom had to chase me down to take my Flinstones vitamin.  Oh how I thought that was such torture - if only I knew.

Keep your friends close & your enemies closer.....

"Keep your friends close and your enemies closer."

While nearly everyone has heard this familiar saying, I often wonder how many people heed the words.  I know that I have lived by this saying for more than half of my life now.  I cherish my friends, they share in my joy and happy news and lend a shoulder when I am overwhelmed or saddened.  While I greatly value our friendships and wouldn't trade them for anything; I do agree that my enemies are necessary to keep even closer.  It is fortunate that I have taken this view and come to accept it as necessary, as my ultimate enemy, the one that I have been engaged in hand-to-hand combat with, slugging it out with, having an absolute bloodbath with for the 14 years could not be any closer to me.  My enemy is with me twenty-four hours a day, 365 a year.  Do I choose to tail my enemy this closely?  Have I become some sort of stalker over the years as I got to know my enemy?  Do I have what the hipsters call a "frenemy"?  No, nothing like that.  My enemy is myself.  Every day is a battle, the rest of my life stretches out like a war. 

Early on, my doctor thought that my mind was weak, unaccepting of the injury I sustained and the fact that my competitive days were over.  I kept pushing forward, kept grinding on knowing that I had accepted that my ankle was never going to be the same AND knowing that my body was still not right, that the pain I was infused with, overcome by and being broken down by was real.  Years passed by and I kept pushing through, kept fighting on, kept looking for answers.  Finally, nearly eleven years later, my enemy was revealed and he had a name - R.S.D.  While I was elated to know my enemy, to identify him, to have a name - it was then that I realized how much my fight was really like the art of war.  I had identified my enemy, I had a name and I was ready to formulate an attack plan.  I wanted to know how to "erradicate" this enemy!  However, I would soon come to find that knowing RSD was like knowing Osama Bin Laden - you know the name, you have a photo to go with the name - but you don't have the complete history, you don't understand why it does what it does...and there is NO logic. 

One day I hope to win my war.  Not just the battles...I win most of those.  I consider each day that I rest my head on my pillow at the end of the day and close my eyes as a day that I have won.  RSD is destructive.  RSD is the most painful of all chronic pain diseases and it also has the highest suicide rate.  Not a happy pink thought - but a very real one.  It is pain that will drop your to your knees, gut you alive and squeeze all of the oxygen from your lungs.  To be able to still trudge on, maintain a full-time job, some semblance of a normal life while living everyday with this disease - that is winning battles.  My body will always be an enemy....or maybe there will be a miracle, a cure.  I don't like to think about that though.  Not a pessimist.  A survivalist. 

One other enemy that is the most destructive?  Ignorant people.  I have found that a lot of people only have sympathy, empathy, compassion or just plain manners when they are around their bestest friends, in church on Sunday or perhaps they never had any at all.  RSD is interesting...one oft repeated saying from doctor to patient is "Use or lose it", the use it being the affected limb, the lose it being the function and ability to do so if not taking said "use it" advice.  I make it a point to walk my dog, do balance exercises, yoga, pilates - anything to keep my body moving, limber, healthy and functioning.  However when people see me exercising, or the fact that I am younger, and not horribly out of shape, using a wheel chair, or with a horrid limp, they assume that I'm fine, I must not be that bad.  I am always trying to guard my right side, as is my husband.  It's an interactive football/chess game in real life.  How to strategically move the piece across the board without checkmate.  I have had to give up many of my favorite past times because they are simply not safe anymore - concerts, live music in general unless outside - but then there is that crowd factor.

As I sit here now, the skin on my hand is stretched and sore - the scar bright pink and slashed zig-zag across the top of my palm.  My ankle is twingy and throbbing, the sudden 20 degree shift in weather, while welcome, has flared it up slightly and has worn me out. 

That said, another day comes to a close.  I have won another battle.  Finished another day, look forward to another tomorrow.  I am weary, I am tired, I am aching for a change for the better...

Hostage 1198

I knew something was so disturbingly wrong before I was even able to open my eyes.  As I tried so hard to swim the the surface, to break through to the other side of consciousness, I knew that something was completely off.  As I cracked my eyes open, blurry eyed, I could just make out the uniformed guard with a shotgun in his hands, gazing at his prisoner.  How on earth did I end up in this place?  And why did it hurt so badly?

Where was I taken hostage you ask?  In all places, I woke up in a hospital, taken hostage by my own body.  I went into surgery to have a seriously messed up ankle injury fixed.  When I awoke afterwards, I was in far more pain than even the original injury caused.  I drifted off to sleep in a sleepy, haze as I counted backwards from 100; and awoke to the feeling of lava surging through my ankle.  The pain was so intense, so searing and deep, cutting, to the bone, unlike anything I had ever felt in my life.  I begged them for some relief and was confused as to why I would feel so much worse.  The vibrations of the road on the drive home sent waves of nausea coursing through my body, the bass line coming off a nearby car sent tears streaming down my cheeks.

My doctor told me that it was the bone settling, that there was a lot of pain  associated with the bone reconstruction.  I was told then, after a year went by that I needed to get a grasp on the fact that I was no longer going to be the skater that I was before the accident; and that alone can be a powerful, painful realization that could be coming out.  I knew that wasn't the case.  I have always known my body very well, known when I was injured badly, or rather could keep skating on something, and this was certainly something different.  It took years, more than 10 years to find a doctor that would have the answers.  And even after I would find out the name for what it was I was feeling...there still was a lot of confusion as to what unlocked it and truly caused it.  Really, that still hasn't been answered to this day.

It's funny, I was so relieved to have a name for it, then to find out there was no cure was devastating.  Now, I'm still trying to figure out where it was that was most frustrating difficult, hard to deal with.

Once upon a time....

Once upon a time there was a girl that twirled on a sheet of ice, could balance on a quarter-inch blade as if she were born too...and maybe she was. From the age of 4 until 26 skating was the dominating force in her life. She ate, slept, dreamed and day-dreamed about skating. Every song she heard was a skating routine in her head, every available free space an opportunity to practice a jump, a leap, a spin. Even after her competitive years came to a close there was the joy of coaching and passing along the skills and passion that she had for her sport, her craft to others of all ages. Life was a fairy tale really - she seemed like the girl featured in the book -the lucky girl that would get the prince, live happily ever after and have all her dreams come true. Life would be kind, happy and really, bad things don't happen to these girls in fairy tales. Who could have seen what would happen next?

Was it the wicked witch - an evil skating coach that sabotaged her you might ask? No, not that. Was it a horrid little kid that acted out in the most horrid way? Again, no, not that. That girl that skated and twirled with such abandon, such freedom and passion; she was taken hostage. Who you ask? Well, that took some time to uncover... In fact, it took over 11 years to truly figure out what was at the heart of the matter, but the true who has yet to be uncovered and it's now going on 14+ years.

Does this story have a happy ending? Does the prince arrive in time to rescue the hostage? Well, fairy tales are just that - fairy tales. They are fables, stories and while they might be entertaining...they are not real life. This is. But I am hopeful for a happy ending. But the hard truth is bad things happen to good people.

Let's start at the beginning....