Adam's Song

It's all so hush hush.  No one is suppose to acknowledge it.  No one is suppose to talk about it, whisper a word about.  It's a deep dark secret and yet; it isn't.  It's the worst kept secret in the world.  It's happening all around us.  Everyone in this community is suffering.  We all know this isn't working.  We are all trapped in this burning building watching  the emergency exits nailed shut.  What is the answer?  Do we let ourselves burn down in strangled silence?  Leap out of the window and be done with it?

This "secret" that I speak of is the treatment, or lack there of for RSD.  So very many people suffering and yet so very few answers.  Just last month the center at Drexel shuttered their doors.  Many centers offer SCS (spinal cord stimulator) as the answer and yet they come fraught with issues.  There is of course the war on opioids.  Many living in the hell that is RSD are left grasping at straws.  RSD is rated as the most painful chronic pain condition known - more painful than non-terminal cancer, unprepared childbirth, amputation of a digit and others.  RSD is a horrific monster to deal with and those dealing with it on a daily basis have been basically reduced to fighting a raging forest fire with a squirt gun.

I'm beyond frustrated that there are literally NO options for me to choose from.  I am looking at overhauling my diet yet again yet just how big of an impact this can have remains to be seen.  I would like real options.  Something other than being told that I need a battery revision with the battery size smaller to fit my "frame" better.  I have jumped on the clinical trial wait lists, but they are just that, waiting.  If something doesn't pan out soon, I think I will go to Coyote medicine and leave Western medicine trailing in my wake.  I simply can not sit around and wait for them to get their proverbial shit together and realize that those suffering from RSD need real help. Need real options and solutions.  Not lip service.  I'm not foolish.  I realize that people with RSD can turn to suicide. I will however opt for my friends plan in this case...duct tape.  I have children that depend on me.  They love and need.  My husband is amazing and I'm sure he would get snatched up in a heart beat, however I believe that NO ONE could ever love and dote on my children the way I can and do.  Even as busted up and broken as I am, I am the best mom they could every have!  So, you see, I have to stay circling round this sun,  spinning on this planet, dragging my corpse through the sands of time.  No matter how much it hurts, I will gladly bear the pain for them..  That said, I want and deserve a better life.  We all do.

So where do we all find ourselves?  At a loss honestly.  I say we find ourselves behind the proverbial eight ball.  I say we find ourselves waiting to ready.  Waiting to mobilizes, waiting to find our common voice.  Some day I believe we will hear real options, find true care and I won't drop dead from a stroke.  I fear constantly for my heart health.  Not because of what I eat, nor any factors other than how badly my blood pressure sky rockets from pain, the constant stress my body is under from this wicked disease.  I've become an unwilling lion tamer.  The lion constantly circles me, hungry for fresh meat and often has my head in his teeth.  Other than giving up and submitting to the pain, the end of it all, what choice do I have but buckle down and search for options and push my body on?  As my dear friend tells me when I I reach out on those most wicked of days when I believe I can't possibly do this another day, "Duct tape darling.  You have no choice.  We didn't choose this ride, but this is the ride we are on.  Strap in, tape up and reach out."  Let's demand true help.  Let's demand true care.  And in the meantime, let's keep the duct tape going.  We can do this.

I never thought I'd die alone
I laughed the loudest who'd have known?
I trace the cord back to the wall
No wonder it was never plugged in at all
I took my time, I hurried up
The choice was mine I didn't think enough
I'm too depressed to go on
You'll be sorry when I'm gone
Blink 182 - Adam's Song

Changes

So many changes are afoot.  You know that things are changing when you start using the terminology "changes afoot".  That means serious changes folks.  Things are not working.  They haven't been.  RSD has been on the warpath and I've been losing ground for quite some time.  Granted, I continue to get the ole "but you look fine" and "but you look great" but really it's akin to walking up to a coffin and saying how great that corpse looks.  The outside is good, but the inside is all rotted.

For the past year I've struggled with my flares becoming compounded, the stretches longer and more intense, the downtime between shorter and not nearly as restorative.  The needle no longer moves off of walking corpse.  Migraines are a frequent friend, anxiety and panic, chronic breathing issues, the list goes on.  The wheels on this bus are just falling off, as well as my hair.  It's just a sexy disease folks.  As my doctors are left scratching their heads and telling me that they are doing their best, my pain psychologist and I have talked about East and West medicine meeting in the middle.  Coyote medicine, holistic and my increasing desire to turn tail and run away from the western medicine view.  He in turn convinced me to start with baby steps and incorporate some eastern and nontraditional practices while still seeing my "normal" team.

So, here I am.  Waiting to meet my new functional medicine Doctor, embarking on my AIP diet and hoping that with the elimination of so many food groups, my body will begin to heal itself.  As I move forward sitting at the family table eating meals that look quite different from that of my family I'm not bothered by this is the least.  If giving up grains, gluten, legumes, dairy, sugar - I could go on, I'm hoping that I'll give up some of the control that RSD has on me.  I'm hoping that I'll take back some of the power over my life.  I had already figured out that my body can't tolerate bacon no matter how it's produced; the zingers I get as a result are too awful.  I simply indulge in the smell of bacon and leave it at that.  Pork in general doesn't agree with me and red meats have to be limited.

I'm excited for these changes.  I've had some people act as though this change is awful, as though this is something to pity and appeared less than supportive.  To that, I don't understand and simply shrug off.  Food is food.  The AIP diet allows for a lot of delicious food, most of my favorites are still allowed actually.  I'm a seafood fan and none of that is off the list!  There is more to life than fried food and chocolate cake - neither off which interested me that much to begin with.  I want to stay mobile, stay out of a wheelchair, keep my feet under me, stop the aggressive advance of this disease.  If that means no more pizza, I'm ok with that.

Here's the new adventures, new changes and hopefully new progress for me!

Things could be stranger
But I don't know how
I'm going through changes now
I could spend a lifetime figuring it out
I'm going through changes now
Changes -Longhorne Slim

Song of the Ancestors

With RSD, it often feels like the entire world is slanted against you.  Mother Nature, the heavens, family, friends, the world, you name it, it feels as though everything is being thrown against you.  RSD is akin to the Greek punishment to Sisyphus, eternally waking up to roll the giant rock uphill only to have it fall back down and start all over again, all the while feeling your bones ache, break and crush, feel as though lightning bolts are pulsing through your veins and seeing your skin turn bright blue and red.  As the disease moves and grows, gains strength, it feels as though your life does the opposite.

While my disease has grown, gained hold of life in larger jumps each year...longer flares, worse symptoms, loss of of physical skills I use to have, longer recovery times, the rest of my life is shrinking.  Loss of money, loss of friends, loss of confidence, loss of sense of self, loss of hope.  Just like Sisyphus I try to push my way up, attempt to climb out of the pit of self despair and yet just like Sisyphus, I fall back to the ground each day.  I have lost three careers to this disease.  One I adored and was very successful at.  Another that I was very successful at that was a wonderful career path.  The last was good and a fine place to land.  Each time, RSD in some way shape or form stole it all from me.  How do you continue to reinvent yourself when your body is decaying and dying, a house on fire?

I have to believe that this isn't the end of me.  While it can often feel as though it is; when the pain is so great, my heart hammering, my brain screaming and my limbs refusing to cooperate, I have to refuse to believe that this is the end of the line.  That this is the sum of the life.  I don't want this to be me.  I don't want this exhausted, sad, broken vessel to be me.  That's not to say that I don't experience joy, love, happiness and laughter because I do.  It is simply that the scales are so heavily tipped against me.  I want to figure out how to become a new me that isn't some horrible robot.

I had a SCS (spinal cord stimulator) implanted years ago to help with my pain.  It's was suppose to be the answer.  It was suppose to make things so much better.  It has not.  I was so thorough.  I asked so many questions.  I was so careful to challenge the surgeon as to all the possible downfalls and possible problems and I was told it would be clear sailing.  Yet here I am.  My battery pack is a mess, my wires cause me endless pain and I'm told that my frame is simply a-typical to what they implant and the wires are very much on the surface and the battery is too big for my frame.  What am I suppose to do with that?  They give me so much more pain.

I'm exhausted.  The pain makes me not want to eat.  I stumble.  I can't get my body to listen to me a little bit more each day.  Yet this can NOT be it.  This is not what I am.  This is not the sum of my parts.  I'm staring down the barrel of the gun called the end of my thirties.  I want my life to mean something.  I want my life to be more than this.  I damn sure don't want it to simply be defined by this disease.  Currently that's what it is.  Yes, by and large it does and has to dictate many things.  But there has to be so much more that I can do within the parameters of the life that I have left.  Other people with disease speak and inspire others about their diseases.  They go on to do great works with their lives.

I love my husband and children.  I love my dogs.  Yes, I still use the plural form.  I lost my beautiful GSD, 5 months ago and yet I can't bring myself to use the singular yet.  I love photography and believe I have an eye for it.  I love cooking and nutrition.  What do I do with those things?  How do I string those together?  It doesn't help replace the successful careers that I've lost.  It doesn't replace my physical state.  Yet, it's something.  It's a positive.  It's something to put in the plus column.  What I do with it, what I manage to stitch together from it is really up to me.  I have no idea right now.  I hope I find my way.  I hope something comes to me.  Most of all, I hope I can find my happy.

Sometimes the world seems against you
The journey may leave a scar
But scars can heal and reveal just
Where you are

The people you love will change you
The things you have learned will guide you
And nothing on earth can silence
The quiet voice still inside you
And when that voice starts to whisper
Moana you've come so far
Moana listen
Do you know who you are?
 I Am Moana (Song Of The Ancestors)

Love the Way You Lie

Some moments in time are etched in your brain, frozen in time, a snapshot in history that cannot be taken away.  Some of these moments are the things that keep me churning along in life; the first time I saw my children's faces and held them in my arms, the look on my husbands face as I walked up the aisle, my great-grandmothers strong hands that could crack walnuts two at a time.  I know exactly what my daughter wore the first day of preschool - the blue and white checked pinafore dress with embroidered flowers, white t-strap sandals and her hair in a french braid like a headband.   Just like these wonderful moments that I can picture so vividly, I can also picture some of the most awful, horrific and unjust moments in my life with such clarity too.  I have total recall on what I wore, the words spoken, it's like Alice down the rabbit hole.  Tonight I find myself falling back down into that Swamp, that gator threatening to chomp me.

One would think that working in higher education, particularly for Law Schools, that discrimination would be something that would be abhorred.  In my former life, as I fought against the beast that is RSD, I worked on behalf of law schools in higher ed and was quite good at what I did.  I worked for many different universities and eventually found myself in the swampy South.  While my body continued to decline and the RSD continued to take hold and takeover my work ethic propelled me forward.  My University offered bonuses if you hit your goals - I hit my goals and earned my bonuses.  While being on the road was a challenge and broke my body down, I requested small accommodations.  When returning from a trip, rather than filling in my data on the computer at my office sitting in my very uncomfortable chair, I requested to do so in the comfort of my own home where I could elevate my legs and help recover faster.  I wasn't needed in the office - my phone was already forwarded to my cell, I didn't answer any office needs, however this was seen as "different" and I would come to find that "different" simply wasn't done.

My boss loathed the Monday morning pow-wow meetings.  Rather than go over one morning without her requisite Mountain Dew, I was sent in her stead to take notes.  As I sat there in my charcoal grey skirt suit with the pale blue silk tank from Ann Taylor Loft with the blue leather portfolio I was in for the shock of my life.  One of our head HR directors came bounding in the room cheering that the Saints had won the Super Bowl - hooray.  She was so happy (whoopy).  She then proceeded to announce that performance reviews were coming up and she had some reminders for us all.  It was very important to note that if you wanted to fire someone for a medical reason do not list it on the performance review itself, however if you do, NO  WORRIES!  She can work around it and take care of firing said persons.

I remembered feeling numb and driving back to my office knowing that the words spoken at the meeting most certainly did not bode well for me.  My boss had already told me that our University "did not like people like me".  I could not join in the office running club and I was told that I was standoffish as a result.  When I explained that I had a medical condition that prevented me from doing so, it was all downhill from there.  She went out of her way to punish me.  Less than 2 hours later the woman that had been waving pom-poms, a woman minority came into my office and slid a letter across my desk buying me out of my contract and voiding my retirement in the process.  My RSD was frowned upon.  Never mind that I had hit all of my goals while there, that I had raised the most money ever for their Law School, no, no, my disease was really getting in the way of....well.  I'm still not sure to this day.  I just know that as soon as it came to light, I was knocked down and punished.

You would think in this day and age, at a major SEC university that bullying and discriminating against someone with a disability would be a major no no.  Something that could not possibly happen.  Unfortunately I was systematically targeted and done away with.  My boss continued with the bullying and when I was up for a position at a new University I was the number 1 candidate, told that I could expect an offer letter in the next day, only to get dropped after they spoke with her.  She was like a cat batting a mouse.  She wanted to enjoy torturing me before making sure I was dead.

To this day I hate that Swamp in the South.  The precious football program imploded and I couldn't help but smile.  I get sick to my stomach when I think about what they did to me.  The dirty underhanded discrimination that took place.  That I was taken advantage of.  The retirement money alone that I lost makes me want to weep.  Really what makes me so angry is the sense of self that they ripped away.  They looked at my disease and decided I was less of a person and did away with me because of that.  Never mind I brought in more money than they ever had seen before in history, never mind I hit all of my goals, never mind I am a real person outside of my disease.  They were WRONG.  What they did was wrong and it was a violation.  It violated me.  It stripped away my confidence.  It stripped away my faith in people.  It changed my outlook on so many things.

More than anything I wish I could go back to that girl.  That girl that was so sad she couldn't change herself.  Couldn't fix her disease.  That girl that hit every mark, jumped every hurdle, hit every goal and was still told she was worthless and dumped like trash because they were bigger, they could. Let her know they are the dirty ones.  They are the weak ones.  I want to hug her.  I want to help her keep her head up.  I want to let her know that she should sue them.  That even thought they are a giant, David slew Goliath.  I want her to not let this define her for so long.  To not let this eat away at her spirit, her sense of self.  They are the wrong ones.  Karma will catch them.  She can look in the mirror and know that she did everything she could, can they?

Just gonna stand there and watch me burn
But that's alright because I like the way it hurts
Just gonna stand there and hear me cry
But that's alright because I love the way you lie
I love the way you lie
Love the way you lie ~ Eminem feat. Rihanna

Gale Song

Pain.  Four little letters.  Four tiny little letters that are so utterly, incompletely lacking in describing the soul crushing and shattering feel that it can wield.  Pain has so many layers, levels and depths and yet there are no words.   I find myself fumbling to explain.  The tears well in my eyes, I lower my head, I give a nod to acknowledge said pain and hope that with time it will ease.  That some of that pain will not leave the blood pumping wildly out of the heart.

Physical pain is something that I am quite accustom to.  It is as automatic to me as breathing.  To wake up pain free to me is to wake up and know that I have a baby in my belly.  Pain is always with me.  Always clawing at me, trying to pull me down and drag me to bottom.  Some days I am the stronger opponent.  Others, PAIN is the bully that repeatedly throws me down the stairs, sends lightning bolts down my limbs, breaks my bones underneath my skin, makes any movements on my skin excruciating, mere sound waves send pain throughout my entire system.  How I long to hibernate like a bear.  To crawl in a cave and wait it out.  Life isn't like that.  I look for joy.  I seek out the small points of life.  I seek out anchors to this world to keep me here.

My sweet, sweet German Shepherd was one of those anchors.  She was a loyal, protective amazing girl.  She had a larger than life personality.  She was my nocturnal girl, staying up with me through the painful nights.  Her large bat ears and big nose poking over the corner of the bed to check on me through the late nights of my struggling to find relief.  She also had a rare auto immune disease.  It struck her around 5 years old and it was painful for her.  I was constantly looking for ways to help make her life better.  We treated her both conventionally and holistically.  We had a rough go of it a few years back, but we really turned this corner this past year.  Her coat was beautiful again and I felt hope.  Both for her, but for US.

My husbands always is cheering me on.  Telling me that there will be a breakthrough.  That RSD will not ruin my life.  That there will be a cure, or a better treatment in my lifetime.  I keep my heart and hope guarded.  This is a miserable life, to make ones self get up day after day in the amount of pain I'm in - and to know that this is your life....It takes a strong mind set.  You have to have anchors to those you love.  You have to have solid reasons tying you to this earth.  With my sweet German, seeing her improve; it gave me hope.  It put an inkling of hope in my heart that maybe, just maybe the words my husband kept saying to me were true.  That I should have hope.  That maybe I wouldn't be a prisoner of war in my body for my entire life.

Pain entered again and decided to make that a hardened mindset.  My darling girl, my sweet German is gone.  As we were winning against her autoimmune, CANCER decided to get its claws in her.  We had less than 7 days from diagnosis to death.  Laying on a blanket as the February sunshine warmed us and the birds sang their farewells, I had to let my girl go to the other side.  And along with her the hope that I started to build up in my heart.

I'm gutted by her loss.  I miss her presence.  Her personality, her spirit.  The pain that has been left in her wake is so physical, so enormous.  I find myself doubled over at times, breathe gone and throat caught.  My hope is in tatters.  This pain, this grief is such a heavy burden.  I feel guilty that I couldn't save her.  That I couldn't save us.  I feel at a loss.  I feel shaken that one of my anchors to this world h as been ripped away and so suddenly.

When you have something like RSD, and to the degree that I do, you don't have a large social circle.  I've left for weeks at a time and no ones noticed.  I have my family, my husband, my children and my parents, siblings but aside from that, I don't have any people that notice that I'm around.  I'm more of a ghost at this point in time.  RSD has erased me.  To lose my sweet German, to lose my daily companion that cared and depended on me is so difficult.

I'm grieving.  I'm in a flare.  I'm sick.  I'm worried by how very sick I am.  My body doesn't want to function.  I'm tired.  I wish that four letter word would just east up...because I know the PAIN will never go away.

And oh, this too shall pass
This loneliness won't last for long
...
So when you hear my voice
And when you hear my name
May it never give you pain
Cause I don't wanna go
But it's time to leave
Gale Song ~ The Lumineers

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