Fade to Black....

"Emptiness is filling me

To the point of agony

Growing darkness into dawn

I was me but now she's gone"

Yesterday I had my second block done...my first you may remember was performed at the wonderful and outstanding Cleveland Clinic.  This second one was done here - in layover town...I can't bring myself to call this place home.  This was a completely different experience from the first.  They opted to not place an IV, no drugs to help relax and put me in that lovely la-la land of not caring.  Instead - I was laying on a very cold table getting the lovely antiseptic solution slathered across my back and then I waited.....and waited....and waited....  The nurses chatted about the lunch they were ordering, the new scrub designs some store had sales for and what they were doing the upcoming weekend.  Me...I shivered, tried to get comfortable and waited....  After what felt like forever, the doctor arrived and we were off and running.  And that's when things started to get not so fun.  He gave me the numbing injection into my back and I started to get some wicked myofacial spasms - they were rocking and twisting my body. I fought them and ended up just trying to take myself mentally to another place and began to run through my old skating warm-ups.  We finally got to a place when he could begin the block- and that's when we realized that I wasn't really numbed up totally...and I felt the needle snake it's way up my back...I sucked in air quickly and was offered another numbing injection, but rather potentially have some additional spasms - I just gritted my teeth, declined and continued on with my warm-ups in my mind.  It was finally over and they walked me over to the recliners to recover, and went to get Paul to wait with me.  They were concerned that I would potentially faint....  I sat, tried to not cry and finally we left.  I came home and crashed...CRASHED!  I laid down at 11:30 a.m. and the next thing I knew it was 8 p.m. and Paul was trying to wake me up to eat a hot pretzel and watch the men figure skating final!  I did fairly well - I had some dinner with Paul, enjoyed watching Evan win and heated my back....and then later that night -it happened.  I was in the bathroom to brush my teeth- Paul was already asleep in bed.  All of a sudden I felt a "whoosh!!" and I felt like I saw bright white stars and a black hole was closing in on me fast.  All of a sudden, gravity was becoming a factor times 10.  I tried to call out Paul's name, and I knew that I was way too close to our shower/sink corner and that was dangerous, I tried to turn and reach out...and the next thing I knew, I woke up on the floor.  I was sprawled out, twisted up and I felt that I caught the edge of our sink the entire way down from the base of my waist up to my head...OUCH!  I laid there, with Emma coming to my side for quite some time.  I was scared to get up, scared of fainting again.  I finally half-walked, half-crawled to bed and hoped to wake up not feeling too awful the next day.

As you can see, I bruised up my back...but I don't think all of the bruising has come to the surface just yet.  I feel like someone beat me with a baseball bat.  I am so sore, so very beat up and honestly - I am not feeling the relief that I did from the first block.  I had the warm feeling in my foot like I did from the last time, but I have not had the relief from the pain, I have not had the same results as last time...luck one thing is always constant....my guardian angle, my protector and my best buddy - Emma Lu is always there, watching over me, by my side, making sure I'm ok!! :)  

Signs...they're everywhere....

Tonight I asked my hubby to please go to the store to pick up the necessities for tomorrow.  I'll be having another block placed in hopes of helping push the restart button on my nervous system...and breaking this now 12 year cycle of pain.  After my last block, I was left woozy, nauseous and not feeling so swell...as a result, I requested my normal Coke, saltines and strawberries.  I know, the first two make sense...the second??  Berries are good for you...so, I'm hoping I won't feel horrible and the strawberries will be a bonus for feeling good!

When the hubby brought home the goods, I dug into the Coke right away - as I was already feeling a little upset to my tummy...nerves.  I'm not looking forward to another IV, my pain level is really high already and well, I just hate the whole x-ray while they hit the right nerve with needles thang.....  To my "surprise" the Olympic sport Coke I pulled out - the figure skater!  Maybe that is a sign that some of my normal range of feeling will come back to me.  Wouldn't that be something?!

Musical Melody

I dreamed that I was skating last night.  I was flying across the ice...different pieces of music kept playing, and I kept wondering why they couldn't find my music.  None of the pieces were my music.  I kept trying to skate to each piece that played, and each time, I would realize that no, that was not my music either.  I was constantly chasing the music. 

I awoke and despite never finding my music, I am always happy to dream of skating.  I stayed up far too late watching the pairs final, and had to get up far too early for a job that brings me pain and no joy.  I went and ran the course, jumped through the hoops and at the end of the day I showed up to my physical therapy appointment.  I gritted my teeth as I pushed myself to make my feet move the bike pedals.  I did laughable exercises for a former athlete.  I test drove my new cane. 

As I did laps around the therapy room, I was praised for how well I was doing, and told that in no time I would be doing "so great".  I had to smile, grit my teeth some more.  They were sweet and kind there.  But I had to get out of there, before the tears that were threatening to spill over started running down my face. 

This was too much.  I am watching my former lover -my sport on tv.  I dream of choreographing beautiful skating number again....and am getting praise for my endurance to make 3 whole laps with my cane around the therapy room. 

I know that life is cyclical.  That we go through phases.  That hopefully this too shall pass.  Maybe I am being humbled for some reason, reasons that I will some day understand.  But in the meantime... I think I'll go back to dreamland- and hopefully find the music I'm suppose to skate to.

My Grandmother.....

The tears are falling gently in a pitter patter as I sit and write this.  They fell softly and quietly last night too.  I'm not even sure if my husband noticed.  He did notice that I was quite, that I didn't want to talk, and he wanted to talk and chatter and bubble - and was frustrated by my lack of engagement.  But the collision of days on top of my pain and the continued journey through hell is just too much some days.

The opening games were marked with tragedy, as a young 21 year old luge athlete from Georgia was killed on the track.  Of which, NBC decided to run the footage, not once but multiple times in their kick-off features for the opening ceremonies.  To watch a young athlete be slammed to his death at 80+ mph into a concrete support beam that had no padding, nothing to prevent him from flying into these deadly walls...thankfully he was gone just as quickly as you saw it happen.  It was simply, horrifying, and I have yet to understand why it was shown over many times - and in slow motion.  To see him laid out, bloodied was just in such poor taste.  We have we become as a society.

I nearly walked away and chose to not watch the coverage, but I wanted to try to do it.  I was interested for the first time in years.  As I settled in with my glass of wine, I was enthralled by the native american dancers - I love that they incorporated all of the tribes from all 12 providences.  Their tribal costumes were outstanding, their movements breath taking.... and it took me back so quickly it nearly gave me whip lash.

I remember back to the Salt Lake City game.  My grandmother had fallen ill and was hospitalized - nothing serious, it was being taken care of.  She loved the winter Olymics and was falling it carefully - had it highlighted in her tv guide - and had already told all of the nurses that her grand-daughter was a figure skater.  That I no longer competed due to a nasty injury, but I did coach!  She loved the opening ceremonies from Salt Lake City.  She has Cherokee blood lines - and is very proud of that.  She was so happy that they highlighted our Native tribes and was thrilled with the native dancing and costuming!  I can remember that conversation, hear her voice in my ear like it was yesterday.

She took a turn for the worse around the pairs event..the doctors were un sure what was happening.  My mom was with me.  Earlier my Dad had come down, shown up on my doorstep when she initially went into the hospital, and I went up with him - just threw some clothes together and jumped in his car.  They didn't want me to make the trek by myself - knowing that I would cry and most likely speed the entire way.  My mom and I had decided to go back to my apartment in the city to get some fresh clothes that made more sense than the attire that I had packed, pick of some things that I needed and turn around the following day.  Gram appeared to be stable, and it seemed like the best time to make the trip...things had leveled out.

As my mom and I laid in my little bed- I had a loft apartment at the time - it was blustery and oh so cold out, but my little brown stone apartment was a very warm little apartment.  We laid for hours, talking about her, laughing...sometimes crying...but feeling a bit better.  We agreed what time to leave the next day, and tried to get some sleep.  Around 2 a.m. the phone in my apartment rang - it was the hospital calling.  They had done everything they could - she had passed.

That was February 13, 2006.  I miss her just like it was yesterday.  I still slip up sometimes and find myself going to call her when I need to talk to her - good or bad - I still need her.  I can still see her hands -she has the softest, kindest hands- and she'd squeeze mine just before I'd go out to compete and give me a wink - "Good luck  shug"  She was my confident, my advocate, my biggest cheerleader, my everything for the longest time  My gram always had my back.  She was my rock and my stable support.  I spent countless weekends at her house.  I'd fly off the school bus on Friday, running with my backpack flapping up the hill - so that I could be ready to jump in her car when she'd pick me up!  We'd eat pizza, watch movies, I'd drink sparkling apple juice out of her champagne glasses, wear all of her jewelry, watch Johnny Carson & Murder She Wrote together...We did everything and had a blast doing it!!

It may sound crazy...but she visits me in my dreams.  I don't dream about her - but she visits me - we talk, she is there - I know she is dead -she acknowledges it and we both know that the dream is just our meeting point.  I miss the tangible her like crazy...but until I complete what I'm suppose to do with this life, I adore when she come to visit me in my dreams. And some how she knows just when I need her the most.  Although sometimes it is just a visit for no reason at all...

I miss you Ole Gram!!

 

Me and Gram on the boat

 

 My best friend, my gram :)

Winter Olympics...love & curses

The opening ceremonies were marred by a tragedy as a young luge

athlete from Georgia was killed earlier that day. I nearly didn't

tune in simply because of that fact. Why? Because you see, my

beloved Winter Olympics are cursed. For me at least.  For as long back as my mind can stretch, I have adored the Winter Olympics. I have watched my beloved figure skaters twirl, jump and on wings of artistry- although not always as artistic as we would like - skate to their dreams!  I would also watch the hockey with my dad and brother, the skiing -I loved the ski jump and the aerials!- luge, well, really pretty much every sport!  I would find myself fascinated as to what this sport curling was all about.  I never really got that into it, however come the Winter Olympics, I was cheering on Team USA - all the while wondering how on earth one gets into a sport like that!  

I would sit memorized by the tv, dreaming that one day, I would be that girl in front of the audience - so graceful yet powerful.  The girl that puts together the perfect program, the one that leaves your breathless at the end - with a huge smile on your face as your collapse in your deep curtsy and the crowd leaps to their feet and you just know, you just know! THAT WAS IT!!    You couldn't have skated cleaner, better, more perfect!  In my mind - as I'm sure many little girls minds, I dreamed my dreams of standing on the medal podium, accepting my flowers and medal, watching the stars and stripes rise in the arena as they play are anthem.  

For years, I would wait in anticipation of the Winter games.  And then, something changed.  It would be the XVIII Winter Olympics in Nagano Japan...1998.  February.  Some of you readers friends may notice something familiar about that month and year...  That is the month and year that my world changed forever -and not in a good way.  That was the month my ankle got blown apart...the beginning of the end really.  The RSD didn't set in until I woke up from surgery - which they weren't even able to do until months later....I was in a cast for months while they tried to get the bones settled and stable.  I just remember the pairs short that year.  And that's all I remember.  I don't remember anything beyond that....

The XIX Winter Olympics in Salt Lake City...are quite frankly a loss to me.  I could not tell you anything about those games.  I know that my Ole Gram and I talked of the opening ceremonies...and then, she passed away during the games.  And suddenly my greatest cheerleader, top supporter and on of my best friends in the world was ripped out of my life.  

I made it through the game in Tourino...but I can't help but watch these Vancouver games on a knifes edge.  Because...well, they don't seem to like me.  And I don't like loss.  There has been too much of it.

Thank you, may I have another?

I mention that due to my RSD, I take medicines...and medicines...and then some. It is a full-time job keeping track of what I've taken when, and what's due next.  It's completely overwhelming at times- not to mention that just figuring out how large of a purse I need to take my meds with me for the day- depending on how long I'll be gone from the house- can be such a total pain...but not nearly as much as getting off-kilter with my dosing schedule!  In my hot little hand- one dose of pills - yep - that's not the full day's worth of pills- that's just ONE ROUND...multiply that by 3 1/2 folks!  (Some  of those are 4 times a day - others a mere 3).  That's....a lot of pills my friends.

Is is really any wonder why I am so excited at the idea of implanting the stimulator into my spine - and having a handy dandy remote to control my pain...and hopefully tossing some of these babies into the trash?!

No Babies for you!

In the never ending parade of doctors, physical therapist, medicine men and well, any sort of healer - I saw my Dr. Doppelganger.  He looks just like the dad of a childhood classmate.  It's funny, how much of a dead ringer he is....  Not so funny when we get down to the business of our meeting.

As he thumbed through the reports from the Cleveland Clinic, reviewed all the medicine changes since my last visit with him and just in general caught up with me - all before the clock struck 8:00 a.m.  After listing all of my current medications, he looked up at me and said "You're a newlywed now, right?  Not quite anymore?  Ok, well, just make sure you don't get pregnant - with all these medications....you just can't.  You know that, right?"  And good morning, sunshine.  Yep.  I had no idea 100% clarity that I can not get pregnant right now.  That not one but EVERY SINGLE ONE of my medications are hazardous to a fetus....and that my RSD is so out of control that there is no way I even think about stepping off of one - let alone all of them.  So, really, the "don't get preggo" commandment - not really necessary.

And that ladies and gents, was just the right out of the gates talk.  I had another 45 minutes of heavy information to slog through.  There are lot's of decisions to be had.  And, while we're making headway, and I feel that I am starting to really get on the right path - until I get a better handle, and until I get away from the toxic people and environment....there is no control this beast.  I am just tired of always being reminded about how toxic my body is for hosting a baby at the moment, how toxic a baby would be for me (well, not really -it's the people around me - making the RSD worse, making the need for more meds, making the baby impossible...) and on top of that mess - constantly getting the "Oh!  When are you planning on kids?  Are you guys trying?" etc, etc.  I mean, apparently from the looks of things - every single woman under the age of  - death - is knocked up - so apparently I should be too.

But, I do get to experience another spinal lumbar block - no baby required.

Fashion & Murder

When I make to the end of each work day, feeling battered, bloodied and bruised - I have a little ritual of things that I do to help me unwind, forget the day, forget the nasty and hurtful people and comments, and just simply unwind.  If I am able to - and each day I try - I work on my balance exercises.  If it's an exceptional day, I work on yoga and meditation.  Most days as of late, I am in the midst of an awful flare-up and I my comforting mix - one that makes my husband laugh...and I think scratch his head and wonder just a bit.

What is it you ask?  Do I drink heavily and blast heavy metal?  No, the music vibration would hurt- as would the hangover...although drinking a lot sounds good at times.  Do I smash plates and glasses in a temper tantrum?  No, I smash enough accidentally because I have numbness in my hands - we'll go broke if I did it on purpose too!  I enjoy.....fashion blogs (and magazines if it's my favorite time of the mailing month!) and gory death related tv shows!  Yep, fashion and death- it makes a girl happy!  Down right giddy in fact!  Well, giddy for me. 

I know - why on earth do I miss "My Edit" with the tv show Bones?  My husband also wonders how I can sigh over the fact that someone used a new color palette so effectively, or giggle aloud at the thought of me trying to pull off shorts with tights!!  All the while watching with delight and fascination as someone is pulled apart, murdered (or in some cases simply died) in some crazy way in graphic detail via Bones, CSI NY, NCIS (hello Gibbs!).  The answer, really, is simple.

It makes the weird zing-zang balance in my life come together at my finger tips.  Each day, I feel like I'm being murdered.  I feel as though I'm having an autopsy performed on me - unfortunately for me, I'm alive still, and I feel each jagging, searing and stabbing incision.  It fascinates me to watch the forensics of a case come together (and honestly- sometimes it's nice to think that maybe the horrible people to me - could befall a fate of crossing paths with a psycho like on Criminal Minds...).  In contrast, I have to focus on the positive, I have to focus on something pretty and happy in life.  If I can't see something good in it - then I am lost.  There is no point in forcing myself through these motions.  My grandmother always told me that when I feel bad, to dress up a little extra.  When you feel like you look good, you'll feel even better.  I miss her so much- and I try to follow her little lessons.  She was a strong woman and a wonderful friend. 

So, why the gore and glitz?  Because it is my life.  It's the final round of a boxer in a fight- bloodied and battered...but I still want to fight the fight.  And if nothing else, I might not be able to strut my stuff, I'll at least look good doing it.  So, excuse me - there are a few more blogs - and a new NCIS -Los Angeles coming on.... :)

Runaway Train...

A lot of the time, I struggle with how to describe how I'm feeling.  I'm never sure of how honest to be with people, even those I love....especially those I love.  If I share too much and really let them know how I feel, I fear that I will just bring them down, mire them in this misery with me.  And at the same time, I don't want to keep them in the dark either.  It is such a fine line, a wicked and sharp line to walk; when deciding just how honest to be.

My pain has been getting increasingly worse as of late.  This, in spite of my trip to the Cleveland Clinic.  I have faith that some of the good works and ideas that were reached during that trip are still very solid and very much worth pursing.  What I don't have faith in are the people that discriminate because I have a disease, because I happen to require special accommodations and then drill me down with stress and strain and drown me.  I am trying to stay positive, all the while looking for a new home, a new place to firmly put down roots.  I am hopeful that it will happen - I just pray that it will happen soon.  Very soon!

In the meantime, my husband told me to hang in there tonight - that "you're amazing!".  After giving me some encouragements, and telling me that I am able to overcome anything - look at what I've done, I couldn't help but start to cry.  It started with the very dignified single tear down my cheek, but soon it was a full-force waterfall.  I have been waking up at 3 a.m. every night for the past 5 nights - despite all sorts of medicines to help me stay asleep and my pain more in-check at night.  Come 3 a.m. - I wake up and feel as though my bones are breaking.  It feels like there are razor blades working their way out of my body - my hips, my knees, my ankle.  I feel wrecked and completely unable to get into a comfortable position.  This has not only exhausted me, but worn me down and continued to chip away at what little armor I have left.

I finally calmed down enough to tell him the most intelligible thing that I could.  I feel as though I am a runaway train - and not a slow moving just sort of going away down the track- but a screaming fast, racing locomotive flying past the landscape.  And while the train has been racing out of control, with no one at the controls for some time now I can't help but wonder when, WHEN we will run out of track?  Frankly, I have felt as though I've been pushed to my limit for over 2 years now...and I keep breaking through and pushing on to new levels and soldiering on.  That simply can't go on.  I know that it is just a basic principle of me not having the reserves to do it another year, five, ten, lifetime.  I simply can't watch the landscape race by and not worry about the impact that is bound to happen.  At the end of this, I can't help but think that there will be twisted metal and smoking charred carnage.  I am bracing for it, and I feel it building inside....I'm just scared to know what and when it will mean the end of the line.  And when I think about it - I see it in black and white.  I think and dream and do a lot in black and white these days....I'm not sure what that means.....

Rites of Passage...

There are many rites of passage you go through in life. It's to be expected - especially the older you get.  After all, you learn well enough that you will go through the awkward teen years.  You will go through many changes while finding your career path in college, while finding out shortly there after that you really didn't learn anything necessary for life on the other side after college.  As you tumble along the young professionals path with any luck, find love  - shortly there after the childhood rhymes come to mind as "first comes love, then comes marriage, then comes..."

Well, I did find love. I found love at a jazz bar in my hometown.  I found love with my classmate, who I never so much as uttered a word to in all my years of walking the same hallways, crossing paths and living in the same town.  We made the leap into the grown-up life of marriage and soon the questions started to flurry across FB and email - "Are you pregnant?!" and "When are you having kiddies?!" were common.  Every time we visited our hometown people would take note if I was having a drink or not.  With my RSD the opposite of in control and managed - and taking a host of medications that leave me needing to NOT get pregnant, babies are on our do not do list for the moment.  That however, is not a conversation easily had with the masses.  So, instead I just guzzle some wine, smile and laugh that we're not ready, why hinder our love of travel (have you seen the Cleveland Clinic this time of year?!  Beee-you-tee-full!!) and take another glass of Pinot.  I mention this these things because I saw my doctor today.  Among some things, we touched on the baby topic...still on hold.  No shocker there.  That said, in the grand scheme of things, I really thought that I wouldn't go from getting fitted for my wedding gown....

To what I'll get fitted next.  No, not maternity clothes...And not some fancy gown to a night out on the town with my husband to kick up my heels.  I get to get fitted for....a cane.  Yes, a sexy, young and youthful CANE.  My doctor reassured me that they come in colors now and are more fashionable...I'm not really sure how she managed to keep a straight face while she did that....I congratulate her for that.  I am very interested to see just how young and hip these canes can look. Of course she did start with a walker - and I think the look of pure horror on my face make her switch to said cane...with warning that I may need to go to a walker should the RSD not stay contained mainly to my right foot- seeing that it has gone into my left foot.  Wow.  I am sooooo....speechless.

We talked about the need to eliminate the stress -the wicked excess amount of stress in my life.  And we know the pinpoint amount of stress - and that I'm working on fixing that.  On getting that out of my life - gone, bah-bye.  Because frankly, I would love to say goodbye to it/them.  I just need someone to make me an offer....so, here's to hope, love, luck and God smiling down on me.  Although I'm sure there may also be a chuckle while I'm test-driving canes...I mean really.  I'm too young for that...

But, whatever it takes to get healthy, happy, and stabilize my health - I'm all for it.  Thankfully, after a long talk with Paul, so is he. So, here's to where ever we may land.  I can't wait to get moving...me and my really cool cane.

Good Luck & Pixie Dust

I've always been superstitious. As a skater, I had necklaces that I would always wear, my left skate always was laced first and touched the ice first.  I had a certain order to do things.  Some numbers are lucky - but no number is unlucky in my mind.  I also believed in hard work, good luck and fairy dust.  I said my prayers and believed in the higher power. 

Then...I got tumbled like a rag doll in the spin cycle.  My world got turned upside down and for a bit of time, I wasn't sure about the concept of God.  I wondered if perhaps it was simply something put together to keep people down - as I saw people that were horrible, horrible people - bestowed with good luck, good careers and the golden path.  Meanwhile I saw others struggling, others in poverty, in poor health or worse, dead....and it no longer made sense to me.  My prayers tapered off...I slowly believed more in the American Indian spirits..and not so much in the traditional "GOD". 

And now...now I'm back to investigating the Bible as well as yoga and meditation.  And believing in the spirits.  I think that they all have their place.  And they all have their wonder in the world...and we all have to come to our own realization and pace.  God, good luck, spirits and faith are not bargaining chips to put on the playing field.  But, if that is how someone wishes to play through life, to each their own.

Why, you ask, do I bring this up?  Well, tomorrow is a big day.  And as I sit here, and think about wearing a good luck color, writing a positive thought in journal, saying a prayer, asking for luck and wearing my necklace... so, yes, superstitious still.  I believe there is a place for all things - the traditional and buttoned up as well as the hippy-dippy-trippy.  I wonder if everyone is, at some level superstitious.... 

Karma Killer

I must have been a murderer in my past life....Or stole from the church collection plate every Sunday...or something just awful!  I mean, there has to be an explanation for all of the crappy stuff that keeps piling up!  I've got shitty horrid karma of the highest level!!  I am a good person.  I donate to my favorite charity.  I give of my time.  I never cheat, I am a complete and total goody two shoes.  And in return - ever since I woke into this pain hell known as RSD - my karma has been that of a DEPRAVED PRISONER!

Today - today was a day where I am pretty sure that I went through an entire box of tissues.  Yep- a box.  I would go into more details, however the hubz deemed it better to not disclose sooo much on the blog.  So, trust me when I say- it sucked.  Really, really, really sucked!

In short - a lot of tears were shed (me),  frustrations vented (both me & hubby) and more tears shed (again, me). 

Back to the drawing board.....