It's the Most Wonderful Time of the Year

It's one of  my favorite times of the year.  There is so much for me to celebrate.  So many birthdays, Thanksgiving and my most favorite - Christmas.  I love it all.  The lights, the traditions, the songs, sharing the movies from my childhood with my children.  It's the time of year that usually wraps me in a bubble wrap of colored light and gift wrapped protected-ness against the disease and the ongoing struggle that never leaves.  Unfortunately, I'm struggling to locate that feeling this year.  I'm struggling to find that safe zone.   Instead...instead I'm falling down the rabbit hole.

The end of this year has battered and bashed me as though I'm not going to see a 2017.  My body is struggling to fight out of one flare only to fall into the deep, dark depths of yet another one.  My skin is changing colors that would delight me if it were a light show rather than on an indicator of my bodies anger and inability to work properly.  Bronchitis is a new constant friend and sleep is but a distant memory.  The rock that goes up the hill each day has gotten bigger and heavier.  I've gotten weaker and more exhausted by the very idea of the task of rolling it up the hill, only to begin again tomorrow.  All of this has left me tumbling down a very dark hole and I hate it.  I want to feel joy.  I want to feel the Christmas spirit.  I have started to shut down all parts of the world in an effort to stop the noise that isn't adding joy.  The fighting over the election, the overwhelming sad news, it's just too much.  I've got enough sad news to cope with.  I want to grab onto the joy.  I want to soak up the happiness.

So what does one do when they are falling down the well, tumbling like Alice down that dark rabbit hole, freewheeling head over heels?   Well, I throw out my hands and grab onto the roots.  Thank god for my children.  My trees.  They are growing and strong and amazing and they are planting their roots.  And when I find myself tumbling down that dark hole, well, reach out, grab on and stop.  Cling to the small things.  Can't walk again today?  That's ok, I can sit and read that favorite book again.  I can still keep track well enough to play Monopoly Jr.  I don't need to be perfect.  I don't need to be anything other than full of love and trying to find my way back to the surface for them.  I'll beat this flare.   I always do.  And if this is the beginning of the new way, if my legs just don't want to work with me, then I'll deal with that.  They'll love me with or without perfect working legs.  They love me for being mommy.  They have never known the former me.  The one I mourn.  They've never known me as anything other than what I am.  I love them fiercely, give them everything I have and pour every energy into being present in the moment with them.  They are my lifeline to joy.  My father is a cave diver.  It's a very dangerous sport. You go to very dark deep places.  He relies on a complex web of strings and arrows to help guide him when the visibility is so bad that his eyes are of no use.  He must simply hold on and have faith that the string and arrows will lead him to the surface.  My children, my family, are my strings and arrows.  They point me to the surface, they steer me away from the anchor that is RSD.  It's easy to plummet into the depths of depression.  It's easy to want to give in and give up.  And when I begin to feel as though the weight is too heavy and the darkness has crept in too much - I remind myself of my strings, and help guide myself back to the surface.

I'm no longer "Sara the Skater".  I'm not sure who I am to be honest.  I'm at a loss as to who I am and how to find an identity outside of the pain.  I am, however, Mom.  That is one label I am happy to wear.  A badge of honor, a place of pride in my heart.  I may not know much else right now, but I do know that I am a wonderful mom.  That is as wonderful as a place to start as any, when trying to find ones self.

"It's the most wonderful time of the year
It's the hap-happiest season of all
With those holiday greetings and gay happy meetings
When friends come to call"
It's the Most Wonderful Time of the Year

Rise

I find myself drifting like dandelion fluff on the breeze.  I've lost so much of myself to this stupid disease.  I've lost the ability to make my body listen to me.  I've had to give up passions and pursuits that once meant so much to me.  Some of these I know would have naturally fallen off now that I'm a mother of two.  When you have children you lose the ability and time (and quite frankly the desire, at least in my case) to focus on selfish pursuits.

That said, I'm at a loss as to how to define myself in terms larger than "mommy", "wife", "RSD".    Don't get me wrong.  I adore being a mommy, and I am blessed to be happily married - but I feel that there are many people out there that have the same tags. I loathe to use the RSD as any sort of marker to identify myself.  I hate those three initials (although I hate CRPS even more - good lord let's confuse my brain even more!).  I was posed the question when I was sitting quietly at a counter of our local breakfast diner eating my meal the other morning "what's your dream.  What's your passion?"  I'm embarrassed to say that I was stumped.  I mean, flat out at a loss for words.  I use to have dreams, a lot of them.  Many of those dreams came true, so I came up with bigger and more wild dreams to chase down.  Same thing goes for passions.  Things were going crazily good and life was spinning merrily along on my dreams brigade- to the point that it spun out of control and crashed.  RSD knocked me flat on my back, took the wind right out of my lungs and left me gasping for air.  My husband found me there, lying broken and battered but still wanted to make a life with me.  Sometimes I wonder about his judgement and decision making skills.  I still have dreams, but they aren't for me.  I dream that my children don't have what ever it is inside my body that went wrong.  I dream that they will be unharmed.  I have big dreams for my children.  I have dreams and hope for my husband too.  But for me...I couldn't think of one.  That makes me sad.

How do you begin to learn to dream again?  How do you learn to let yourself have hope to feel that excitement about the future rather than dread, fear and trepidation?  I'm trying to take baby steps.  I dream that I'll master skills on my camera well enough that I can do lovely family photos for our family.  I have dreams that I can help a dear friend with her service dog business by trying to fire up my brain cells and help them with some fund raising.  I have secret hopes that it will be profitable for them. Finally, I'm harboring a dream that maybe things will get better.  Across the board, things will get better.  The fog will lift, the sun will come out and this life will not be so scary anymore.

I've learned a lot since my diagnosis almost a decade ago, and living with this for more than that.  Most importantly I know that I am stronger than RSD.  Every day it tries to kill a piece of me - a piece of my body or a piece of my soul - but that I can't give in.  I must stay strong.  I must remember why I'm here.  I must remember why I'm still navigating this maze.  I've got two little ones, two fur babies and a husband that think I'm very needed.  That's enough to keep me stumbling along in the dark, picking up the pieces, attempting to smooth out the jagged edges and find the new me.

Such is the way of the world
Can never know
Just where to put all your faith 
And how will it grow
Rise, Eddie Vedder

Spirits

I'm a cold weather warrior.  Sniper.  If you're not from the right coast I'm a goofy foot, hard charging figure skater.... from back in the day.  Past tense.  Damn past tense.  I was.   I was/am a lover of the english language as well....and well, I also don't know which way I fall.  I am. I was.  And according to my husband there's still hope....and I like to hope there is... but I don't hold much hope.

Coming out of remission sucks.  Being free of your disease is amazing.  You're Superman.  You're bulletproof.  I remember that feeling.  It's called life pre-RSD.  Honestly, I was such a blissful, reckless, happy, dumbass.  I took it all on the chin and just kept rolling.  Now, it's an uphill  climb to get out of bed.  Yet I've got kids and that's not an option so I've gotta gut it out.  It's amazing how your competitive spirit shows up in different ways.  In my reckless youth it was competively with broken bones, now its young kids with a husband with a busy schedule, no help and only one night away in 4 1/2 years.  I chuckle when I see others that I use to have as contemporaries doing their little posts about "winning" or "going hard" and I know how much help they have in child care, how many nights away they get, how many resoritive nights of sleep they get, couples vacations....but end game - I fight a bigger battle, I'm not a show boater and never did that game, my kids know me and love me for the fight I give and you never win when you look at what others are doing.

That brings me to whats currently to what's happening in the world.  Rio.  Ugh.  The Summer Olympics.  As a winter girl you would think  that this wouldn't bother me - and yet this is totally messing with me.  It's messing with my mind, bothing me each and every night and making me want to go break some glass, box some people or fight some crime.  Why?  Those damn human interest stories.  That asshole Bob Costas.  Yep.  You heard me, Bob Costas, he's an asshole.  Oh, she never thought she'd make the Olympics because of her disease, but thanks to her doctors, she 's here!!!!  Or blah blah blah.  Thanks Bob - go F yourself!  (Well, I have other reasons to hate Bob, but this is my main reasons to hate him for now....he's inaccurate).   It would be great to think that you could have a disease but be on your game and find good medical care and go about your life...HAH!  I have  a disease and see the best in the world and we still can't seem to do shit.  Which is why we're doing Eastern medicine, a service dog and anything else non Western...because that route hasn't helped.

RSD hit my life and slowly I've had to fight to live my life.  It's sucked out my life.  It's taken minutes, hours, days, weeks and months of my life away from me.  Nothing has helped.  I'm trying to fight back - diet, medications, lifestyle modifications, lifechanging  surgeries, physical therapy- the list goes on....I've struggle to get this monster off my back, out of my body.  It's a mean disease.  It's wicked and cruel.  Few understand these things...

On the McGill Pain Index (what doctors use to measure pain) it's more painful than unprepared childbirth or the amputation of a digit.  Storms equal pain - and they only have to be in a few hundred miles of me to do that.  I'm good at making sure you don't see my pain, I hate when others see me cry/weak - a rollover from my competitive days.  I still spend a good amont of time beating myself up for not being able to heal myself.  Stupid/silly/nonsensical.  All of the above.  Yes.  Yet, I overcame so much in skating from beating landings that I was too far from vertical to stay up and yet I did, to injuries that I shouldn't have come back from that I did that makes me still beyond frustrated that I haven't beat my body into submission.

The Olympics is a time when you believe in the impossible.  When you believe in the great American Dream.  The time when you think how amazing things can be.  I see more aged joggers out than ever before - and good for them!  But that makes me so frusrated!  I simply want to be normal.  My normal.  I don't want to be in super mode that I once was, I don't even want to compete anymore....I just want to get out of bed.  I want to be able to hold my son without hurting myself.  I want to enjoy myself.  I want to enjoy life while I'm still here.  It's so very painful and hurts so much.  It's so hard to get around .....I want to be able to smile, enjoy and love what's happening.  That would be my Olympic moment.

I got guns in my head and they won't go
Spirits in my head and they won't go
......
And I don't want a never ending life
I just want to be alive while I'm here

"Spirits"
Strumbellas

My House

My house.  My glass house.  I feel like I'm trapped in a glass house a lot of the time.  I'm left on the inside looking out.  The world passes by and I'm a spectator, my nose pressed to the glass, fingers trailing down the pane.  My body is a temple and that is one I'm trapped in as well.  They say you should worship your body like it's a temple...I feel like mine is a hated religion.  Mine is one that of a polarizing sect and the village has come pitchforks and baying crowd and set it on fire.  It's all so strange and unfamiliar.

As an athlete - my pain therapist is working with me to not use that term in the past tense - I struggle to get the fix I so desperately want.  I'm like a junkie trying to score a fix, needing that desperate bump before falling into some horrible jerky, shivering withdraw (or at least that's what I envision after many Netflix episodes of Breaking Bad and Intervention).  The only difference, I don't need or want drugs.  I want to feel a burn and a sting of a different sort.  I miss pushing my body to the limit, challenging myself, feeling the burn in my muscles, maxing out my lungs, pushing myself to the edge and seeing just how far I could take things.  How many reps could I do, how heavy could I lift, how far could I go, how long could I last - I loved the pure exhaustion, challenge and sport of it all.  The only problem is, there is none of that for me now.

My body is now my enemy is doesn't allow for me to work out the way I miss.  I have to be so careful with myself.  I have fallen down our steps if I'm too bold by not carefully holding onto the railing and thinking out each step.  My knee is wrecked from the latest crash down the steps, an aching, throbbing, creaky mess.  I can try to gently ride a recumbent bike or use the therapy pool - but nothing like the breathe-snatching, lung crushing, muscle burning workouts that I miss.  The tennis, golf, skating, hiking and all the other random activities that I never gave a second thought about, always assumed they would be hobbies that I would do into my old age.  Well, old age is a funny thing.   My body is that of an old, old woman.  My mind doesn't know that.  In my mind I'm still young.   I struggle to remember my age most of the time.  I don't know if it's because the one spinal cord surgery fell on my birthday and that sort of wiped that one out, or if I stopped caring.  Either way, in my mind I'm still a young woman.  I'm ready to fly and glide and I've got so much life left stretched out before me.  Then I stopped and remember what all has happened to me and I'm no longer so sure that is the case.  I mean, it was less than 3 1/2 years ago doctors were preparing my husband for the odds that I might not pull through, that I had been treated to the full extent of medical capabilities.  How much can you push and ask of one body?

I'm often left feeling like a race horse at the big event.  It's the Kentucky Derby - I'm all loaded up, in the starting gate and we're ready to go.  The crowd is rowdy, loud and cheering.  My muscles are quivering, the adrenaline is pumping and surging through my body, my heart is racing and my mind is already racing and mapping out all of the possibilities.  Then it happens - the race starts!  The only problem - the gates are thrown open and the horses all race out, except for me.  My gate simply won't raise.  I'm left in my stall- the gate pinning me in, my heart drowning me in hammering thuds, my muscles ready to explode -and yet there is nothing I can do.

The only problem with this scenario, it's not a nightmare, it's how I feel so much of the time.  It's how I feel about life.  I think that's not helping my panic attacks at all.  I've had a lot more of them lately.  I've had a much harder time calming down from them.  I feel like I just want to do anything to get that feeling out of my system - but I can't.  It's driving me crazy.  I feel like there's already so much that I have to fight and battle on a daily basis, this is just so much more to bear.  I need to find a way to cope with it.  Find a way to shake it out of my system.

When I was a coach I had some parents express to me that they couldn't understand how I could stand at the boards and remain so calm and relaxed while the students competed and tested.  The parents were always very keyed up and and nervous.  I always explained that if I appeared nervous that would only make my student nervous and it would be a giant snowball effect, therefore, even if I was nervous, I never showed it.  I always was calm, slight smile, totally Switzerland there.  I feel like that is my life.  I'm constantly showing others my coaching game face.  The "everything-is-fine, don't-worry-I've-got-this, smile" face.  I'm not going to show others the pain, the worry, the panic, the anguish, the fear.  No, I bury it, I shove it deep down.  I don't show others how badly I wish I could join in the normal every day things that people do.  Or how much I miss playing golf with my husband.  How badly I wish I could run and race across the fresh spring lawn with my daughter and hike with my dogs.  How much I wish I could just have an outlet or a hobby.

From the outside, I'm fine.  I'm ok.  From the inside, I'm a town that's been ravaged by a tornado.   I'm swirling, tumbling through space.

Welcome to my house
Play that music too loud
Show me what you do now
We don't have to go out
Welcome to my house

My House - Flo Rida

Gone Gone Gone

What do we really leave behind?  I've poured myself into so many projects, so many people, so many things...what has that left behind?  Is there any piece of the old me still floating is space out there?  Is there any pre-RSD Sara out in the world still floating and dancing in the wind like the fluff of a dandelion?   My students that I spent hours and hours with, the colleagues and coaches that I worked with.  The friends and faces that use to know me - is there any part of me that still exists out there?

I wonder these things sometimes, not in a narcissistic way.  Well, maybe it's a bit narcissistic.  I mainly wonder if any of the spirit that was me still is remembered, still exists in this world.  It's weird, I always think of myself as someone that died.  There is the me pre-RSD and the me post-RSD.  That has resulted in two totally different people.  I wish that wasn't the case.  I miss the girl that I use to be.  I miss the carefree girl that I was.  I miss the confident person I was.  I miss the self-assured, I can tackle the world, I can handle anything the world can throw at me girl I was.  I don't know how to explain it to people.  It's really like the girl, the woman that I was - she was murdered.  It was a nasty thing, and she was thrown in a shallow grave in a hasty manner and maybe some day that Sara will get the proper burial that she deserves, but in the meantime, I miss her.  I wish she could find peace.  I hope her soul can rest.  In the meantime, I'm left in the void.  There is an enormous void in my soul, my heart, my mind - I'm not me.  I'm some lesser version of the old me.  Some photocopy that lost the ink, some half-assed, bad imitation of the me that I was.

So I'm left wondering, I spent hours with people pouring my time and energy and spirit into their life.  Did any of that last?  Did any of that stick?   Did any of that matter?  Do any of them even remember me?  Not that it should matter at all....I just can't help but wonder.  I remember every single student of mine.  I remember the students I had to leave behind.  The ones that got left behind in a hurry when I was hospitalized with problems that had many questions and not a lot of answers...finally RSD flagged and came up - but at the time, I was just a mess.  My life spun out of control.  I was an exhausted mess.  My body was beginning it's breakdown and it made no sense to me yet.  It still makes no sense to me - but at least I know to expect it.   I still feel guilty for leaving them behind.  For not having answers for them.  For being too sick and scared to be able to explain to them why I had to go.  I miss them.  I miss coaching.  I miss my old life.  I love my life now - well, I love my family that I've been blessed with.  But this RSD thing...I could do with out it.  I'd make a deal with the devil to rid myself of it most days.

So, once my old self is gone....is it just gone?  Is the old me just dust?  Is there any part of me still hidden deep down , crushed and buried in the rubble of the RSD landscape that can be dug out?  Are there parts of me that can be salvaged?  I work with my pain psychologist and I still haven't been able to feel worthy of feeling happiness.  I've been type-A my entire life.  A perfectionist, a performer, a pleaser and someone that completes the task.  I have been failing - failing at forcing my body to rid itself of the RSD.  I can't make it override the RSD misfires, I can't make myself ignore the pain, I can't make this go away and it drives me nuts.  I feel like a failure because I can't make it go away.  There must be some part of me still buried in the wreckage that is left.  I should be forgiven if I feel joy or a fleeting smile and relief with my kids for a moment or two.  I struggle with feeling like I'm not worthy of any happiness.  None.  What do you do with that?  How do you move forward with that sort of burden?  Well, that first thing is you talk about it.  I'm at least doing that.

I hope I can uncover some part of the old me.  I miss her.  I don't know how to feel differently at this point.  I'm lost and sad and feeling like I don't belong here any longer.  I'm simply a cork bobbing along the ocean...no one is going to notice that.  I'm hoping to change how I feel, not a huge amount right away, but at least chip away at it little by little.  Maybe soon enough my feelings of self loathing, self doubt and hatred will be gone, gone, gone.

You're my back bone
You're my cornerstone
You're my crutch when my legs stop moving
You're my head start
You're my rugged  heart
You're the pulse that I've always needed

Gone Gone, Gone  Philip Philips 

Let her go

I've struggled with writing this blog post.  I've struggled with writing anything over the past week or more.  My life always has ebbs and flows, ups and downs.   My RSD has the upper hand more often than not and I have been trying to learn to cope better with that.  The problem is all the other pieces of life that have been piling up, weighing me down and dragging me through the floor.  Each night I would try to get comfortable, try to find a little piece of clarity to write and sort out my mind a bit and that simply would not come to me.  Each night the buzzing in my ears was too loud, the jack hammer behind my knee cap too painful and insistent, the swelling in my ankle to explosive to try to focus on anything for more than a brief shooting star second.

Two nights ago we experienced our first thunderstorm of the season.  A right of passage here in the northeast, a signal that at last, spring is officially underway.  At around 1 in the morning as the thunder boomed in the distance, my sweet lab came thundering up our stairs herself and burst into the bedroom looking for reassurance.  As she has aged she has become less tolerant of the storms.  We're a lot alike, although our lack of tolerance displays in different ways.  I myself wasn't asleep - my body was wired and angry at the sudden changes in pressure.  I got up and gave her some kisses and ears rubs, shut the door again (she can open any door in our house no matter how firmly you have it shut) and laid back down with her flopping next to my bed.  I watched another episode of junk tv on Netflix while I idily stroked her fur and drifted off to sleep.  I woke up to sunlight and an hour I hadn't seen on the clock in quite awhile.  I had actually slept in until 8am - something I hadn't been able to do in months.  I smiled and was hopeful that maybe this was going to be a good day.  That thought lasted for a hot minute.  As I was working to get my legs under me and get moving out of bed, my husband informed me that something was very wrong with my sweet dog; that he was afraid she had suffered a stroke in the night.  In that split second, I went from having a great start to my day to my heart shattering and wondering just what on earth I did to anger God so much.  I seem to keep taking hits on the chin and I'm having a hard time trying to keep it together.

My little blonde dog, she has been with me for a decade.  She has seen me through multi-state moves, studio apartments, townhomes, first homes, living the single life and life before I knew my husband.  She has always been very tuned into how I am and knows when I'm in a flare and has looked over me, worried over me and loved me something fierce.  She's been the best little buddy a girl could every hope to find on a drive to a rescue group in Delaware.  She's not gone yet - and I'm certainly  not counting her out, she's rallied before, but she's hurting.  She's walking like a sorority girl at the end of the night down College Ave - listing badly to one side with a head tilt, her eyes zig-zagging back and forth like she's got vertigo something fierce.

The thing that I'm finding so incredibly difficult on top of dealing with watching my fur baby go through this and making sure that she is comfortable, that she isn't in distress and that I'm being a good mommyy to her - is that I've got other people wanting to tell me how to feel, how to act, how to express myself....I feel unwanted opinions rammed down my throat and it's all I can do to not light up everyone around me.  I've got the people leveling opinions to me not only on the situation with my dog - but on my feelings overall and how it works into the grande scheme of things.  I don't quite remember asking for their opinion, I'm not quite sure how they can have such an expert opinion when they so very rarely get to see me in person and when we talk on the phone- they barely can focus on what the conversation is about because they are too busy talking to the kids and adults in the background on their end.  Some of what they said was extremely hurtful.  Extremely hurtful.  I'm not sure why they felt like now was the time to jump on me.  I guess I seemed like I needed to feel like I wasn't living up to being a good enough parent - what with trying to balance RSD and parenting.

My husband and I are a bit at odds on the issue too.  I have very difinitive opinions as to how things will and should go and while I heard him out with his thoughts, my final word was - she is my dog.  My dog.  My decision.  That was not to hurt him.  That is a fact though.  She is my dog.  She is my dog, has been from the start.  I don't agree fundamentally with some of his views and therefore I trump him on how it will be. I am a very stubborn person.  You almost have to be with RSD.  It's the only thing that keeps you going.  That crosses over into all parts of my life though.  I will dig my heels in.  If I feel passionately about something, I am going to defend that feeling, fight for that idea, argue that point - that's just who I am.

I guess what I'm trying to say is.  My heart is heavy.  My head is swimming with what to do, how to handle everything that is going on and what my next steps are.  I'm angry that some people just want to tell me what to do and how to do it.  That's the worst thing you can do with/to me.  You try to bully me into something and I will only dig my heels in harder.  Honestly, I'm just in survival mode right now.  Take care of my dog that had the stroke, my dog with the rare auto immune disease, my kids and then make sure my walls are built nice and high around my heart.  Why you ask?  Because I can't take this shit anymore.  I'm done.  I can't get hurt or blasted for my opinion if I've just dug a moat and stay hidden behind a wall.... I'm done trying to communicate.  Apparently RSD makes that too difficult.  Or, you know, ask someone else and that have other theories....half cracked ones, but other ones..

I'm exhausted  I'm done.

Staring at the bottom of your glass
Hoping one day you'll make a dream last
But dreams come slow and they go so fast
You see her when you close your eyes
Maybe one day you'll undestand why

Let Her Go  Passenger

Hurt

Hurt.  Such a simple word.  It gets asked often and thrown about.  Are you hurt?  Did your feelings get hurt?  Did that hurt you?  Sounds like that hurts.  Hurt.  Four little letters.  I remember as a child there were certain words that could get you into trouble and they were often known as four letter words - this one is no exception.

This entire mess, this entire RSD mess started with an accident in which I was hurt.  Most times when I was hurt, I could shake it off.  In the cases when I wasn't able to power through, I would rest for a day or so and then I could go back to my life as normal.  This time it was different.  It was much different.  I was hurt and in a very bad way.  After casts, surgical repairs and years of fixing the problem I was left feeling even more hurt than the initial injury.  It didn't make any sense to me.  The initial hurt never went away.  It never got better.  It only got worse.  It would get better for a little while, but it would come and go and at the strangest times, my leg would just simply go out from underneath me.  It baffled me, there was no denying that, but I kept trucking along with life and hoping that it would get better and at some point it would stop.

Fast forward to the discovery that it was RSD.  At last we knew what we were dealing with.  Now we could tackle this problem.  Now I could get some real relief.  And I did.  But for very short periods of time and then that hurt would come back and come back stronger.  I grew more and more frustrated as I tried to continue to live a real and productive life and the RSD ate away at me from the inside out.  Finally after exhausting temporary blocks to my back, I went ahead with the SCS (Spinal Cord Stimulator) as this was presented to me as being my only option that was left.  I was out of other means to treat my disease - medications were maxed out, I my spine couldn't have any more injections - I was out of options.  After much research and grilling of my doctors, I proceeded.  And I was left with more hurt.  I don't take my care lightly.  I go to one of the top treatment centers in the country, it just happens that this is the way it has worked out.

So, where does this leave me.  Well, I am in constant pain.  More than even my husband realizes.  I try to hide my pain from pretty much everyone in my life.  I can't stand to deal with his disappoint and let down when he knows how much I suffer, my mom becomes to upset to know she can't help or fix things from so far away and really there aren't too many people that are very close to me to realize anything other than the surface hi, hello.  I'm exhausted from pain - from hurting - and I don't what else I can do.  I feel like I just want to stop feeling all together because honestly it's too much.  I spend so much of my waking hours trying to keep from breaking down in front of my kids from pain and discomfort that once they are to bed it's all I can to figure out whether I should go cry in the shower or collapse into bed myself.  I want to fall into a deep dreamless sleep an I just can't.  I'm exhausted, but my knee screams, my ankle throbs and lights up and my back and battery pack get all kinds of unhappy as soon as I lay down and try to relax.  Each night I'm so tired and each night I struggle to relax and sleep.

I'm tired of hurting.  I'm tired of how much this SCS has added an extra layer of hurt on top of my RSD pain.  I'm exhausted stressing out about whether or not I should have the unit removed.  I feel as though it has to come out - but I'm intimidated by the idea of yet another surgery, the cost of it, the stress and strain on my body, the recovery time, the impact it will have across the board and trying to figure out what the right answer is.  It gives me a headache and anxiety just thinking about it.  Hopefully I choose the right decision for me and I can come out of whatever is next with less, not more pain.  I'm so tired of hurting.

Full of broken thoughts
I cannot repair
Beneath the stains of time
The feelings disappear
You are someone else
I am still right here

Hurt - Nine Inch Nails

That I would be good

Self worth is a tricky thing.  When you're a child you don't even think about it.  You simply roll along in your world and you happily dance along, proud of your accomplishments be they small or large.  I see that now as a parent myself as I'm cheering my children along and try to help build up their spirits and sense of pride and self-worth. You work so hard as a parent to a child to help create a sense of self worth to this little person who is just entering the world and learning who they are.  It's quite the process, especially when you are struggling to find and build self worth as an adult at the same time.

Now that I'm middle aged and find myself adrift - no longer a child earning top marks in school, no longer an athlete performing and receiving medals and trophies for my performances, no longer in the workforce receiving performance based bonuses - it has left a void in my self worth department.  A lot of a persons self worth is tied to their identity.  In this day and age - much of our identity is tied to your job.  What is your title and how fancy does it sound?  Back in the day I was never known by my first name, it was always with "the skater" attached, as though that was my christian name.  After the accident and my retirement from coaching, I become the Development Officer.  Ooooh, I know what you're thinking - fancy.  Eh, not really.  It was one of those things in life that fell under the category of being good at but having zero passion for.  Perhaps if I had been raising money for a cause I was passionate about that would have changed things, but my speciality was law schools....not really anything that rang my bell so to speak.  After that I went to the Stewardship department side of things when the travel was breaking down my body too quickly, but again, the office setting was too hard on my body and my bad days were out numbering my good ones and I could never predict when I would be ok to sit at a desk for any length of time.  So, at last, I had to throw in the towel.  At that point in time, I had no title left but "Mrs".

I'm very proud to be a Mrs.  I love my husband.  He is my best friend and we are closer than any other couple I know.  That said, I don't want the "Mrs" to be what define who I am.  I no longer had a job to help define who I was.  I was reluctant to let the RSD be what defined me.  I didn't want to let that monster be what defines me.  I felt as though if that was all that was left of me, then I had lost.   I tried to push the notion of what defines who I am at the core of me out of my mind, yet it kept rearing up in my thoughts.  I met with a new doctor and part of the new patient intake involved a "get to know you" worksheet (oh yay!).  As I went through the document, I became more and more downcast.  I had "n/a" to list as my work.  Under hobbies and interests I also wrote none, scratched that out and put down "my children", then proceeded to scratch that out again and begin to wish I could just be anywhere else in the world.  My children aren't a hobby.  The are my life.  They are my lifeline.  They are what tether me, what keeps me pushing the rock up the hill in the world.  They are what make me smile when all I want to do is lay down and sob.  They are what make me pull out a well loved book and try to find calm rather than pull out a bottle of wine and try to find escape from pain.

So you see, this brings me back to that self worth thing.  How do you define yourself when you're left with your life in tatters.  When you're left wondering who you are and question everything that is left for the most part.  My husband is pained by this subject quite frankly.  He loves me.  He adores me. I know he does.  The problem is - I don't love me.  I'm angry at me.  I'm still mourning the loss of me, the person I was, trying to work through quite frankly the rage that I feel at times that I'm left with so much pain in this body.  It's mind blowing to me that a body can feel this much pain.  There are times when the pain rockets so high, when my pain circuits misfire so badly and the air feels too heavy with sounds that hurt, when every fiber in my being wants to explode and my heart hammers like a race horse firing full out around the track and I think, "this is it.  This is the end of me".  And in that moment, I fully expect to have a stroke or heart attack or implode from the pain, because it feels as though there is no way that I can possibly bear it.  My code for this with  my pain doc is Barbaro...  So, how do I recreate self worth out of these ashes?  How do I find it within myself to love me again.  To forgive myself for not being able to heal.  To forgive myself for not being able to stay in remission after my pregnancies like I had hoped and prayed for.  To forgive myself for being a flawed individual with an invisible disease.

I think I keep looking to my children because they look at life at the most basic level and that's where I have to start to build back up from.  They don't know any of the person I was before, and they don't analyze who I am today.  They just know that they love me.  For simple reasons.  I'll take it.  I got extra hugs and kisses tonight, along with being told I was the best mommy ever.  I didn't do anything amazing, it was just because...  Maybe she knew I needed to hear that.  Who knows.  What I do know is that I'm going to try to remember to be kinder towards myself.

That I would be good even if I did nothing
That I would be good even if I got a thumbs down
That I would be good if I got and stayed sick
That I Would Be Good ~ Alanis Morissette

Dreams to Remember

This has been a bad year.  This has been the kind of year that makes you question your resolve, your faith, your place in the world....it's been that kind of year.  It's been hard.  It's been oh so hard.  I've been struggling and I don't think that's been a surprise to anyone that knows me or has been following along.  That said, there are still moments of joy, moments that spring up and surprise me and remind me that I am loved, that there is hope, that maybe, just maybe - in the grand scheme of things, it will be ok.  Maybe this whole shebang could have that happy ending after all.

My little girl has been asking, pleading to learn to figure skate.  Of course she has.  We have moved back to the town where it all began.  Being back in the town where it all started, she has been told what a wonderful skater her mommy was.  It's funny - she was told this by other people and after more than one person told her, she asked me later at home if I really was a figure skater.  I told her that a long time ago, yes mommy use to skate.  She looked hurt, wondered why I didn't tell her.  Oh the confusion we cause when we try to protect ourselves from the truth.  She really wanted to see Mommy skate,which I tried to explain that mommy could no longer do, but I would try to get her grandparents to send up some video for us to watch together.  After much digging around - some video was located (although most of the footage is lost it appears....that kills me, but that's how my year is going.).

My daughter was enthralled watching the footage.  Some of the video was just of simple practice sessions with my coach - yet she was so taken with it.  She grew more resolved - she wanted to learn to skate AND mommy was going to teach her.  UGH.  That was a bit of a knife to the heart.  I would love to teach her how to skate.  I loved coaching - it was my perfect career and I hated having to give it up.  I kept explaining that mommy couldn't skate anymore, but that she could still learn how to skate.  So, off she went, reeling off waltz jumps through our kitchen excitedly planning her skating lessons in her mind while I hemmed and hawed and never went through with signing her up.

I'm a selfish parent.  I couldn't do it.  I went on the website.  I looked at the coaching roster and the program....I hovered over the signup form and everytime I thought "it should be me taking her out there".  And every single time I exited the browser and pushed it out of my mind until she would bring it up again.  I was putting my ego, my pride, my hurt above my child's interest and wants.  I'm not proud.  I knew I needed to get over it.  I pretended that I didn't want her to do it because I was afraid she would love it, take a bad fall and get RSD too...but honestly, she could fall playing soccer or tennis or running to the mailbox.  It's just me having a block about not being able to skate with her.  So, I finally told my husband we could sign her up but he would have to be the one to take her.  I couldn't handle it - at least not at first.  I was sad, but I was going to have to get over it, over my ego.  I felt down as I went online to sign her up for lessons and dragging my feet, I logged into FaceBook first to kill a little more time before doing so.  That's when something went right in 2016!

As I navigated around FaceBook, I ended up chatting with my first ever figure skating coach.  I adored my first ever coach.  I mean ADORE!  I had a sleep over at her apartment as a kid and I remember feeling like such a rockstar for it.  I was in her wedding.  She was just the most amazing figure in my life growing up and I've kept in touch with her over the years since she left our college town.  Her daughter now attends college in our town and she is back to visit fairly often.  In an unusually bold move on my part- I asked if she still skated at all, and if she did - would she take my daughter out to work with her the next time she came up to visit.  I explained that I couldn't, and that it would mean so much to me if she could.  She wrote back that she would be happy to and she would be in touch the next time she came in town to visit.

That next time happened this weekend.  I cannot begin to explain how amazing it was to watch my daughter go hand-in-hand out onto the ice with my first coach.  To watch them work together...I'm tearing up now as I write this.  My coaches motions were so familiar even after all these years.  It's a language you don't forget - it came back quickly and I knew exactly what she was saying to my daughter even though they were clear across the arena.  I saw my daughters eyes light up and how incredibly proud she was as she worked to master skating all by herself, swizzles and backwards wiggles on her first session on the ice!  I thought at her young age that she'd last maybe 30-45 minutes at most.  We finally got her off the ice after an hour and 45 minutes!  We have plans for them to skate together again the next time my coach is in town and my daughter can barely contain her excitement or wait for that to happen.

It's been a hard year so far.  There is no denying that it has kicked my butt so far.  I am hopeful that we have good things on the horizon.  That said, in the depths of my sadness, I have those that have meant the most to me come back around into my life and bring with them unexpected sunshine.  For that I am blessed.  I don't have a ton of friends.  RSD has really weeded out my friends.  That said, it has shown me the ones that are really there for me.  The ones that are in it for the long haul.  The ones that really matter.  I've had a week where I've cried more than I have in a long time, felt more pain than I have in a while, had less sleep due to such bad pain and the SCS causing such crazy misfires and yet I've also had some of the most amazing moments of joy mixed in.  I've had old friends lift me up, remind that I'm loved, remind me that I've got a support system, that I'm not alone, and held up a mirror that has showed me a glimpse of that girl I use to be.

So, tonight I can drift off to sleep (or try to) and think about my blessings because I do have them.  I have my husband, my children, and I am lucky enough to have a few other people in my corner that are with me as I fight this battle.  I think I need to stop fearing this year and just be a little more free...or fearless.  Being stressed and terrified won't stop the bad things from happening, but it will stop me from enjoying any of the good things that are occurring.   If nothing else, I am aware that my children are growing up so quickly and I do not want to miss out on joyful moments with them because I'm fearing "chicken little" moments with the rest of the world.

Nobody knows what I feel inside
All I know, I walked away and cried
I've got dreams
Dreams to remember 
Dreams to Remember - Otis Redding

Superman

Sometimes I feel like I have to be Superwoman.  I get exhausted by trying to be the normal version of me.  My pain levels are crazy.  The bass of a song feels like someone is throwing a hard punch repeatedly into my body.  The slight bump from the little old lady with her shopping cart at the grocery store feels like a car wreck.  The wild and fierce hug from my little ones feel like razor blades and crushing love all at the same time.

That said, I hate showing my pain, my vulnerability, my weakness in public to strangers, to friends, to loved ones.  I carry with me the golden rule of skating - you fall in competition, you get right back up with that smile plastered to your face and you keep going as if nothing happened.  It didn't matter if the fall was a small bounce, a bone jarring knock or a bone breaking crash - the end result was the same.  You brush it off as if it never happened, it did NOT bother you at all and you smiled.  There is a video of me competing in Buffalo and I fell on my opening jump - I followed the golden rule and popped right back up, smiled and continued on with the rest of my program.  I skated a clean program the rest of the way, smiling, landing clean jumps and made sure to curtsy to both the judges and the audience at the end of the program.  I skated off the ice and the video follows me as I get my skate guards from my coach, who you can see if asking me a question.  The video ends with me nodding curtly with a smile still plastered on my face as I stride away in the direction of the lobby.  I remember that competition.  I placed second.  I also fractured my pinkie and sprained my wrist and heaven forbid I let anyone see me cry.

Maybe I would be better off if I could let people in a little more. I work hard to make sure that I don't limp, that I don't whine about my pain, that I don't go on and on about my disease...I come from quite the genealogical stock of stiff upper lip and not so fuzzy trait folks.  English, Russian, German and Cherokee....I'm more ready to not let on that my limb has fallen off than let on that something hurts.  I hate letting my daughter see me hurt too often.  It's inevitable that she'll know I'm in pain, that I hurt, that it's a bad day for mommy at times, but I don't want that to shade her days with too much gray.  I think that it's selfish of me to let it color her world too much if I can help it.

So, I do my best to prop myself up when I'm in public and I nod, I smile, I try to protect myself from the people around me and I try to talk to no one.  I avoid questions and when people ask how I am, I smile and usually make some banal comment on the weather or how I'm such a lucky mum- because that part is true.  I don't want to depress people and let them know that this little outing took all morning to get the courage and energy up for, and that it will have wiped me out.  That I have to be extremely careful how I do things because I find myself in tears easily due to pain these days and please for the love of all that's holy do not try to hug me.

That is why I feel like I have to be Superwoman.  I feel like I need the armour, the bulletproof shell to go out in public to deal with strangers and all of the potential dangers that are out there.  With my spinal cord stimulator and the scar tissue issues I have, I cannot easily move these days, especially reaching overhead.  This is just one of the problems that I have to deal with along with the RSD itself.

My daughter has a supergirl outfit that she wore for Halloween a few years ago.  She loves playing dress up and that one has been back in rotation along with her princess gowns as of late.  Maybe I should get one in my size so that I can proudly wear my SuperWoman status.  If nothing else it would help me keep that safety bubble around me when I'm out and about - people would think twice about getting too close to that middle age mom in the SuperWoman costume....ha!  Maybe I just solved part of my problem!  I always get so nervous about people being too close to me.  That could do it!

Maybe I need to stop trying to be quite so stoic.  Maybe I need to let on to others a bit more when I'm struggling, when I'm having a bad day, when I'm in pain.  I just have a hard time letting go.  I think it's the dam effect.  I have this wall built up, to protect me.  I'm afraid that if I start to let down my guard, if I start to share more, I feel a bit too much, and the dam will burst - and quite frankly I don't think I can survive all of those emotions.

I wish that I could cry
Fall upon my knees
Find a way to lie
Bout a home I'll never see

Superman (It's Not Easy)

Five for Fighting 

Fix You

Music is a powerful vehicle to me.  I find that it can transport me to a different place and time, to a different person and body.  It can create an arc between the past and present, igniting muscle memory fibers long thought dead.  A beautiful piece of music has the ability to lift your soul up to places that you didn't know existed, can rip open your heart in a beautiful way that you shed tears of joy and wonder and make you ache with such longing that you feel as though you've just lost your dearest friend in the world.

As a child I found that I could rarely hold myself still if I loved something about the way a piece of music that was playing sounded to me, no matter where I happened to be at.  Whether I was on the ice, waiting in line at the bank with my mom, out to dinner with the family, grocery shopping, it didn't matter.  If the music spoke to me at all, my little body couldn't keep still and I had to interpret it.  I would glide and leap and spin and find myself in a world that was solely myself and that song that was playing.  I wasn't doing it for attention, I wasn't do it for the naughty thrill of reeling off as many axels across the produce section as possible, nor was I doing it because I was trying to pass the time - I was doing it because to me, that was simply what my body was suppose to do.  It was suppose to breathe, to walk and to of course, express the joy, the sadness, the countless emotions that music make you feel.  I simply couldn't keep it in.

I always found my happiest niche in skating was with choreography and the artistic expression side.  Yes, I loved to jump and spin - but my mind was programmed in such a way that literally every single song that I heard was automatically broken down in my brain to a "skatable" format.  I would identify where the spins would best fit, where the jumps would naturally go and of course where the footwork piece would layout.  It didn't matter what genre of music, my brain would break down every song and style to skate to it.  It was a challenge to me, the more outlandish the piece to try to skate to the better I would mull it over in my brain.  I liked non-traditional skating pieces best.  I had very varying tastes in music to begin with.  I come from a competitive music trivia family anyway (more on that another day) and parents with wildly different tastes in music, which led to my having a love for classical, Motown, Classic rock and everything in between.

In my competitive days of skating, I would throw on headphones and listen to music while visualizing my program and mentally preparing for my program.  I hated talking to people and didn't like pep talks, I much preferred to let my music playlist do that for me.  When I couldn't sleep at night, I had just the right music to listen to that would help me drift off.  Needed to study for a big test?  Just the right music to focus for that.  A road trip?  Excellent!  I would spend lots of time culling my music to plan what all I might want to listen to along the way.  Walking around my college campus, always with my baseball cap pulled low and my earbuds jammed in with the volume up while I dreamt up new skating programs to music that I listened to.  The main thing here, my entire life I have adored music.  I use music to lift me up, to soothe me, to be there in just about every occasion of my life.  And in just about every instance of my listening to music I find myself choreographing a program in my brain, as that was always such a passion, a love of mine, an easy and happy outlet for me.

Here's where it gets difficult - and you knew that was coming now didn't you...  I had to essentially stop listening to music for years.  After the RSD set it, after I tried to ignore it, after I fought against it, after I tried to keep coaching, after I fought so hard and lost to keep my life going in the direction that I worked so very hard to achieve, I found that I couldn't stand to listen to music anymore.  Music was just too much pain and only pain.  Even the happy songs were now sad.  I'd start to choreograph programs in my mind and I'd remember that I'd never again get to choreograph any programs and the pain would wash over me.  I would try to fall asleep listening to music and inevitably I would have dreams that I was skating again.  It would be so real.  I would lace up my skates, step left foot first onto the ice and go through warm ups.  Sometimes if I was lucky I would get to do a few spins and jumps but I would always wake up usually right as I was just getting onto the ice and starting to do my warmup laps, and I would feel so good and then it would hit me as I woke up.  I would be so happy for a split second.  I skated, everything was ok, maybe I'd go again today...no wait, that's not right.  Oh yes, it was a dream.  I can't skate.  I can't even wear a sock on my right leg right now, so there's no getting a skate on there.

So for a long time I stopped.  I avoided listening to music, I rode around in my car without anything on, I would put the tv on for company in the house instead of music, anything to avoid hearing music.  Here's the thing.  You can't avoid music.  Music is everywhere.  It's scored on every television show, they play it in the grocery store, restaurants, you name it, you'll hear some music there.  I had to finally face that music wasn't going to go away.  I had to make peace with it.  So, baby steps.  I started listening to things were completely counter to skating music - jam bands, bands I had never listened to in the past and I found myself enjoying the music again.  I also found myself listening for the swell of the music for the spins, the jumps and footwork points...and that it didn't kill.  It didn't hurt anymore than anything else that RSD has thrown at me.  In a way I found that it gave me some control back.  Where I had been running away from it all, I was facing this fear head on.  I am in so much pain that I miss out on a lot, well, much of life. Sitting in my chair or lying in bed and closing my eyes and escaping back onto the ice while listening to music gave me my body back for a brief window of time.  While listening to the music I escape my prison of pain and I'm free again, flying over the ice, wind whipping in my hair, cold snapping at my cheeks and the chill of the air almost feels real.  To say that it doesn't hurt when I have skating dreams and I wake up and realize that I can't skate or take my children skating would be an outright lie, because it still guts me.  I'm at the baby steps level with this.  I am working at controlling how I feel with this and I do love escaping  in a daydream, it's just the dreams at night that get to me still.  That and the not being able to skate and be "normal".  That said, I'm going to focus on what I can do to enjoy the life I have now rather than focus on mourning the life I no longer have.

I have a lot of people that are working to try to help fix me.  I have an amazing team at the Cleveland Clinic, my local doctors, and of course my husband who are all trying to help fix me, make me feel whole again, bring me back from the brink, give me back a piece of the life I use to know.  My husband is always so upset that he can't fix my pain when I'm so broken down by the shear weight of the pain, the flares, the wicked ups and downs and unpredictability of it all.  I know that if he could he would absolutely fix me, fix this for me.  But he can't.  But here is the things that maybe I can start to turn the corner on.  Maybe I can fix how I cope.

Yes, fix how I cope with RSD.  I can't fix me.  I don't believe that going gluten-free (did that) or some other diet will solve this, nor do I believe that I can simply wish or pray this away.  It doesn't work that way.  What I can do, is change the way that I cope with it.  I thought that music would make me too sad and I avoided it for a very long time.  And it was true for a long time.  Then time passed and I was able to get some clarity and enjoy music again.  Not just music but how I could remember how I felt moving to music in my mind to the music.  I take vacations back to my former athletic body all of the time listening to music all of the time.  It helps me to cope with the pain now.  On nights and days when my pain levels are spiking, I put on music and envision myself whole and focus on the music.  It's wonderful and I'm so thankful that I can still find the focus to use music to center myself.

I'm hoping that I can continue to build myself back into a better version of me.  I'm never going to be the girl that I was before I got RSD, no matter how many times I wish that could happen.  That said, I think I've spent enough time wishing I could go back and stop this from happening.  Now I've got to figure out how to live the best life that I can with what I have.  I have RSD, but that shouldn't mean that the joy is absent from my life too.  It's time to start working on fixing me.

When you try your best, but you don't succeed
When you get what you want, but not what you need
When you feel so tired, but you can't sleep
Stuck in reverse
And the tears come streaming down your face
When you lose something you can't replace
Fix You 
Coldplay



  

Let there be light

I found this when searching through the archives of my blog...I don't know why I held back on publishing it...my feelings have merit.  What I said deserves to be heard.  My feelings deserve to be heard.  What I tried to write tonight wasn't able to make it through the pain in my brain to words on the screen.  Instead, there is this....

After swimming in the murk and the depths - I am making my way towards the light again.  I feel like a diver that that is slowing making their way toward the surface - after free-diving to unreachable depths and pushing myself further than anyone should; I can almost feel the surface within my grasp.  I can see the sunshine glinting above and the warmth is coming back.

If nothing else, I have learned both the extreme hatred and mean spirited petty, spitefulness of people - for no reason other than you have something different than them.  I have learned what it's like to be discriminated against and it is a horrible feeling.  I have seen things twisted for benefit of pure evil and good "Christians"  do things that are certainly not anything I would consider "what Jesus would do".

I have out of that circumstance learned just how much stronger I can be, how much stronger I am - despite their attempts to knock me down, to grind me up and to tell me otherwise.  I have found friends that I lost touch with. I found that I am very loved and cared for.  I found that these people - these haters - don't matter.   And that they don't deserve the space in my brain...that they no longer should have the privilege of making the noise in my head.  Because it's all drivel... I am better than them, it and I am focusing on different things in life.  

Hello

Hello.  Yes.  I guess I can relate to a lot of this uber popular song by the songstress Adele.  Hello.  Those can be such heavy and weighty words for someone with a disability, a disease, an illness.  You see, there are certain illness that see a rallying.  A war cry and food trains and people wearing specific colors and bumper stickers and marching.  Then there are other illnesses.  There are those of us with less, well, less glamorous, less understood ones....we don't have giant marches, the NFL doesn't earn even more money charging special licensed jerseys in cute colors every fall for my cause.  I get it.  It's hard to understand.  This monster - we don't have a famous face to it, so there isn't a big surge for funding, nor an ouporring of understanding and love much like Parkinson's saw after Michael J. Fox came out as being afflicted by the disease.  Don't get me wrong.  I think support for any and all illness/disease/whatever is huge and wonderful.  I'm not slamming or putting down the ones that have the army behind them.  Nor am I saying they shouldn't have the support, colorful ribbons and marches that they do.  I'm simply saying...well, not all people struggling through an illness, disease or challenge has the support like that.  I wish all people could experience such understanding and support.

I feel sometimes like I'm on another planet and I'm trying to phone back and say hello to people.  This disease has made communicating with others so incredibly difficult.  I really struggle to connect with others and I realize that.  I struggle to relate and connect with those that aren't close because of obvious reasons.  I'm entrenched in pain and struggles - it's hard to get to know strangers when I'm dealing with trying to make it through an hour much less a day.  Then their are the people that I love the most.  I have a hard time connecting to them.  I can't let them know how I really feel.  I see how it crushes them to know how badly I hurt.  How tattered my life has become.  How incredibly hard I struggle to make it through the day.  When I start to let on how incredibly hard of a struggle it is, I see my very strong husband start to lose it, start to fall apart.  He falls apart when I give the glimpse that I'm not invinsible.  He seems to think that I'm so much stronger than I am.  He seems to find comfort in thinking that this isn't as bad or hard on me as it is.  I have realized that I need to try to let him keep believing this.  At least for now.  He needs to have this false hope.  This placebo pill.

So you see, I'm left with no one really knowing who the hell I am anymore.  Not even my best friend.  My husband, who I am so close to.  We are best friends.  And yet, I have to hide the extent of the land mines, the wreckage, the bombs that have been detonated in my body; they all have to be prettied up, polished up and propped up.  No one knows how badly I hurt.  I take that back.  My pain psychologist and my one doctor, I'm pretty frank with them.  I tell them how awful I feel.  I let my guard down, I let the tears fall.  I just haven't figured out how to reconcile this girl that I am with the girl that they knew.  I don't know how to put those two girls together.  Sometimes I think it's just an impossible task.  I just...I don't know.

So yeah.  Hello....are you there?  I guess I need to go try to introduce myself.  I need to tell them about my life...But what to tell?  How much do I share?  When do I stop talking about my life as a professional figure skater?   I feel like I betray myself when I don't mention that.  Skating was my breath, my soul, my reason for being on this earth.  I feel like I betray everything when I don't mention it.  I still can't listen to a piece of music without listening for the cut points.  Or to see where I would put my layback, the bielman, the double loop, the axel-half loop-double sal  I just can't seem to break that wiring.

I just can't seem to break out of that mold totally.  Time to get this old creeky, angry body into my medical bed.  Wish me luck for a peaceful nights sleep.  I don't think anyof this made sense....what's new?  No one reads this but me, so whats the difference?  This is for me and not for anyone else.  If this helps anyone else, helps them either understand or help them to fight the monster themselves - great.  But really, this is just for me.  To help get the swirling thoughts out of my head and quiet my brain a little so that maybe I can be a little calmer...a least for a bit.

Hello, it's me
I was wondering if after all these years you'd like to
meet
To go over everything
They say that time's supposed to heal ya
But I ain't done much healing
Adele - Hello

Long may you run....

I seem to have a problem with feeling at home.  With landing on a place.  Now, when I was skating, that was not an issue.  Before that beast entered my soul, no.  No, that wasn't an issue.  My body rotated like a whirling orbit in space, my right leg kicking out to slow the speed, my left leg softly flexing on an expertly repaired knee and softly and confidently gliding backwards I would go.  I was home.  I was at home.  I was always at home on the ice.  That smell.  The ice does have a smell to it.  As cheesy as the movie "The Cutting Edge" was...that D.B. Sweeney character was right.  The ice has a smell...and whatever rink I walked into felt like home to me.  My problem?   My skating career is over.  My skating anything is over.   That RSD monster has its claws sunk deep into my bones and its ripping at my physical self and trying to rip out my heart and soul while its at it.  Skating is gone.  Most things are gone.  Skating, hobbies, friends - they have all been cast to the shadows.  The thing though, even before I ever heard of RSD, even before any of that started to shade all of the color in my world to just black and grey, I never felt at home anywhere but on the ice.

So there in lies the problem.  My home is gone.  Well, that's not completely true.  I suppose it's more like it's been repossessed.  However you want to look at it, the only place I've ever truely always felt at home, is gone.    The little town that I've spent so much of my life I've always had a love hate relationship with.  It's a wonderful little town.  But it's just that.  It's a little town.  It's got a lot of ghosts.  It's got a lot of people I don't want to see when I turn corners when I do venture out on days that I actually muster the energy, strength and courage to do so.  I feel like I'm trapped in a box.  I feel like a mouse in a box, a maze.  I want to break out of this town.  We left.  We got out of here.  We came back on false promises and lies.  Now we're here and well....I just want to leave.  On days when I have a decent day and I make it out of the house and am able to drive and the kids are in the car, it's so hard to not just press down on the gas and get the hell out of here.  I want to blow the dust off my soul, shake the cobwebs out of my brain and get out of this place.  It's a hollow place.  I have no family left here expect those that are buried under quiet tombstones.  They would forgive me for getting out of here and escaping this place.  They knew how much I wanted to get out of here anyway, so it wouldn't be a surprise to them.  I'm lonely here.  I feel like this place is wrong.  I feel like I'm dying faster here.  I feel like no one would notice if I just upped and left and never said goodbye.

So where is home?   The South has always felt more like home.  I love out west too, because I love the mountains and I have family ties to both the South and West.  I just don't feel any tie to this cold, harsh northeast anymore.  I'm ready to get out of dodge.  I feel like a racehorse in the starting gates.  I've got all this adrenaline pumping through my veins to leave and I just can't seem to get out of here quick enough.  When I push down on the accelerator to merge onto the highway I want to keep pressing it.  I want to gun and run as they say.  I want to be free of this place.  I feel trapped and I'm so tired of being the bird in the cage.  I don't care at this moment how to deal with the details as the type A person that I am.  I feel like I'm going to die waiting on sorting out the details.  Every winter I'm here my health takes a bigger hit.  I feel like my heart can't possbily deal with that.  I am scared I'll have a heart attack or stroke and that scares me.  I may have a really sucky shitty monster taking over my body...but I have a lot of life left to try to live and I want to do it to the fullest that I can.  I don't want to be robbed of a second of it.

I need to stop spinning my wheels.  I need to stop letting this beast get the best of every single second.  Living where we do -it wins the battle every winter for the most part.  From October until almost May I don't really live.  I survive.  And I battle to do that.  That is not how I want to go through what's left of my life.  I'm on the downhill run at this point.  I've faced that fact.  The good part in facing that fact?   Realizing that you need to let go of bullshit stuff that doesn't matter, take stock of the people that matter, let go of the ones that don't and figure this out.  So yes.  I'm going to try to start being better able to enjoy my life again.  I'm going to try to get to a place where I can find hope and love and happiness even in the midst of this shit called RSD.  That's not to say that I won't get mired in the pain and not be able to see the light some days or even weeks.  I'm just saying....I'm going to try.  There's no harm in that.

So....here's to finding home.  I want to find my home.  My families home.  I'm homesick and I just wish I knew where to take us to get rid of that feeling.  Honestly, I've been struggling with that feeling for years.  I'm nearly 40 and I've been struggling with that feeling for nearly 20 years now.  Hopefully I can feel at home soon.  It's been a long time coming.

We've been through 
Some things together
With trunks of memories 
Still to come
We found things to do in
Stormy weather
Long may you run

Long May You Run  Neil Young 

  

Head full of doubt

Winter is a cruel, cruel exclamation point on this disease RSD.  I live in the Northeast now.  I overcorrected a few years ago and left the warm South and now I suffer for months through the long dark cold and the entire time I question if I'll be able to make it to spring.  Will I be able to make it through to the other side.  I doubt my mental resilience.  I doubt my bodies ability to hang in there.  I doubt everything and everyone.  As the wonderful song by the Avett Brothers so sweetly sings, I've got a head full of doubt.  I've also got a tornado swirling in my brain.  This pain that is overloading my body, that is flooding through and surging into my ankle, back, and arms - it's all screaming into joints and tendons and areas that aren't really in danger.  The bones that were broken so badly have long since healed.  The scalpels and poking and prodding and all the wrongs and dangers have subsided and yet my body still shrills with warning sirons as though a tsunami is about to slam into my shores.  And while these alarm bells are sounding, while all these pain signals are being sent and resent, my mind is being being melted and fried and exhausted and I just want peace and rest and I can't find it.

I long to leave this place.  I want to move away.  To pack up, sell this house, move away and never come back.  It's not home to me.  It's the place that RSD invaded my body and started to chip away at my soul.  It's the place that I had an overly cocky orthopedic surgeon tell me over and over as I came to him with concerns that something wasn't right that "his work was perfect" and "I was fine".  I, as it turns out, I was far from fine.  But it was more than five years and a multi-state move and finding a new orthopedic surgeon before getting diagnosed with RSD.  That long wait and that constant brush off meant no hope of catching the disease early, meant letting the beast getting it's claws into me, getting the the upper hand.  I have no family left in this town.  I also really have no friends left in this town.  This disesase is a lonely one.  I can't do "bootcamps", spin class and whatever other fitness for mommies is popular, nor can I pop out for drinks randomly - I'm basically homebound in the winter but sometimes I get windows where I can get out.  However most people aren't interested in someone that has to play it by ear or cancel most of the time.  They just start to tell you and or your husband that they don't invite you to anything since they're sure you couldn't make it.  Thank you SO much for making that decision for me!  Insert major sarcasm.  I love feeling even more isolated.  I mean, that helps me so much.  I have nothing to lose to leave.  I know my husband has friends he'll miss.  My kiddos will miss friends too.  However, kids are resilient and they'll make new friends.  I want to leave this place.  I miss my family.  I miss the warmth.  I want to leave winter.  I want to say goodbye to it.

I really want to try to help figure out how to get out of here.  How to make things better.  How to correct this course.  I just don't know how.  I'm so exhausted.  I'm so wracked with pain.  My body is beyond pushed to the limits and my brain is buzzing and dinging and whirling from the constant and crazy misfiring pain signals.  I'm spent.  I have enough left in me to worry about not being about to figure out this mess.  I'm able to worry about not being about to work anymore.  Able to worry that I can't just fix things anymore.  I can't just force my body to listen to me.  Sometimes I'm sitting and my legs simply don't listen to me anymore.  I know that they are there and yet they feel so very very disconnected, so very foreign.  As though they belong to someone else.  It scares me.  Can I move them?  What if I can't lift my leg?  What if this is it?  What if I'm done?  What if my body is don listening to me?

As I said, my brain and body are so very weary.  I am so very tired.  So, I shall end this now.  It's in the wee hours of the morning.  My body is in so much pain but maybe a different poistion will make it feel better.  I can have hope still sometimes, right?

I hope that we find our answers soon.  I hope that 2016 gets so much better for us.  I hope that we find a way to get to a warmer climate to live.  I have a lot of hopes.  I hope, I wish, I pray and I believe.  Some days it gets harder than others.

And on that note, I'm don't for tonight.

There's a darkness upon me that's flooded in light
In the fine print they tell me what's wrong and
what's right
And it comes in black and it comes in white
And I'm frightened by those that don't see it
~Avett Brothers

The More Things Change...

It's been so long since I've posted anything.  So much time...some things change, but mostly they stay the same as the old saying goes.  It's the dead of winter here...another polar vortex, another nasty flare, another week filled with me wondering as I claw my way out of bed "How can I do this?  How can I possibly make it through the hour, let alone the day?"  The pain is unreal.  I just can't explain it to people.  I honestly don't want to try to explain it to most.  It's too wicked for most to comprehend and for my loved ones I really wouldn't want them to fully understand what it feels like and what I'm going through.

I'm struggling so much with stupid things.  Stupid little things that I took for granted pre-RSD.  Things like - getting dressed in a flash.  Now I take forever to figure out what to wear.  Not out of vanity, not because this outfit makes me look hippy or that outfit makes me look "fill in the blank"...no, I take forever because clothes hurt.  Clothes hurt where my battery pack is implanted, and when I'm in a big flare, clothes hurt on my legs and arms.  So I'll start to try to put on a shirt or a pair of pants and it just feels like concrete or a pair of sandpaper and jagged rocks jeans and nope- off they go.  Even yoga pants, sweat pants, you name it, they hurt.  It takes forever to find something that doesn't hurt and don't get me started on then finding a shirt, socks and shoes that equally don't hurt.  It's an overwhelming task and it makes me just want to curl up in my closet and forget the whole thing.  It's just too much for me to accomplish.

Being out in public - anxiety, panic and terror.  It's winter too, so it's not just people that I'm terrified of, it's the snow and ice that I've got to deal with as well.  When I'm in this much pain I'm in extra high alert mode - getting bumped into when I hurt this much makes me want to scream and my instinct is to shove back.  I want to scream.  My head is on a swivel and I get sweaty just thinking about having to go someplace with any number of people.  It's overwhelming, the grocery store has become my personal war zone and forget preschool pick up - I'm just not able to do that.  My husband and mother in law trade off going to the school to usher my daughter out to my waiting car if they are unable to drive her all the way home.  I just cannot deal with the congested hallways, ping ponging kids ready to bump into me and parents unaware that I cannot handle being bumped into.  I just...melt down thinking about it.  Add to that the ice in parking lots, snowy sidewalks and other wintry issues and I just fall apart again.  And again.  Oh, and did I mention that I fall apart again?

The pain is ramped up so much that my brain is in a constant state of what I call "ping pong".  My brain feels like it can never calm down.  It's always zinging and it feels like something is just shooting around in there.  I also feel like something awful is about to happen...like some sort of doom and gloom is about to drop on my head.  My pain therapist said its normal to feel this way when I'm in a flare like I am and in a constant state of pain.   Problem is - the small rational part of me knowing this, and the irrational pain engulfed part of me that is otherwised swamped by feelings of impending terror just don't match up.  I try to talk  myself down from the feelings of terror, but it doesn't work very well.  It sucks.  I jump, I have have the worst nightmares when I actually do sleep right now and I just...I just want it all to stop.  I'm hoping that by getting some of this out "on paper" that it will get out of my head.  I'm so tired.  I'm exhausted by this pain.  I've been getting some naps in - but I'm still so tired from all this pain.  I'm just so tired of trying to suffer through winters.

I wish we could move from here.  I hate winters.  That's easier said than done though.  Not to mention where to move to.  I know where we lived in the South didn't work for me last time because hurricane season treated me terribly - much like the winteres in the North treat me now.  I need to find a happy medium, if there is such a place.  I hope there is.  I can't handle this.

I want to have hope.  I want to believe there is more to life than this.  I want to believe that my life will be more than wishing away 6+ months of the year because of how pain-filled those months are.  There has to be a better way to live than just simply surviving.  This isn't any way to live.  I can't believe in this day and age that they can't help me any more than what they have.  It's just...it's wrong.

I'm tired of feeling lonely and isolated.  I hate that I feel that way- and my husband feels so sad when I tell him that I feel that way- but I do.  Not because of anything he's done.  He's my bestfriend and he's done so much to make sure I feel loved and happy and taken care of - and he's amazing.  I just - feel lonely because he still needs a life outside of these four walls and he has a lot of friends...and when he gets together with them - it really compounds the fact that I have none.  I don't have any friends.  It makes sense honestly.  You can't have friends when you can't get out to make them.  I have to stay home, I'm in pain, I can't socialize, I'm not hable to volunteer on school projects, I'm not able to go out with my husband when he's invited to couples things, I can't join a gym, I can't do any of the things that women do to gain friends.  I can't go out for drinks, go listen to a band, go for a run - none of that stuff.  So...yeah, I'm not making friends, and it makes sense and it's through no fault of my own, it's just life and life with this disease...but it still sucks.  It still makes me feel lonely and well...that's just another thing I have to learn to live with when it comes to RSD that I'm struggling with.

Ok, this has taken me forever to try to write.  I'm not even sure if it makes sense anymore.

"The More things change the more they stay the same
The more things change the more they stay the same
Ah, is it just me or does anybody see
The improved tomorrow isn't what it used to be"
Bon Jovi