We’re Off To See The Wizard – The Wonderful Wizard of Oz

So unfortunately this Dorothy with her Ruby Red cane is going to see the wizard (aka the Neurologist) tomorrow as I've noticed some changes in my condition since my last bathroom spill in the bathroom which was over 2 months ago.

To be fair, Glenda (My Primary Doctor), wanted me to get another MRI since it had been 10 months since my last one. And wouldn't you know it, my insurance company aka Flying Monkeys, said I didn't qualify and Glenda told me to go see the Wizard because he would have more pull with those annoying creatures.

And I put it off as long as I didn't feel any worse and thought it was proactive but I would still approach it with the wizard at my next appointment which was only a couple more weeks away from now.

But then that green wench cackled at me and sent numbness down my right arm where I couldn't feel my fingers at all – not a good sign even in the smallest of realms. Combined that with subtle changes of existing symptoms finally made me do the right thing and follow the yellow brick road to the Emerald City where all my doctors live.

As I poured over all my latest imaging for clues, using meditation to keep the anxiety to a minimal amount – as stress mixed with what equates to a major power line with a short in it does me no favors and takes no prisoners even on good days.

Because of my case being unusual for the diagnosis because of my age, no trauma, and not a lot of symptoms that shot up red flags for
Myelopathy, it laid undiscovered most likely for years. Which unfortunately that is what myelopathy is good at – masking its identity because the symptoms can be so subtle that the root cause isn't found for a while so most myelopathy patients have permanent damage, the only question that remains is how bad.

For example, you wake up one morning like you slept on your neck the wrong way – and after it doesn't go away your doctor orders X-rays that show arthritis and bone spurs. Is your doctor going to think you have a spinal cord injury based on some
neck pain and imaging shows arthritis? Probably not. That's why it's rarely found immediately because it's so subtle, and usually by the time it rears its ugly head – guess what … you will most likely have some degree of permanent damage.

The spinal cord is an amazing tissue/organ. It starts at your brain stem and is about 1/2" and gradually gets as thinner as less and less information "signals" need to get passed the further down your body. It is a your main electric highway of signals that branch off of cord from nerves that give your body every sensation you feel – from the sand under your feet, to a bulging bladder seeking a restroom while you're doing the PP Dance, to every ache and pain you feel.

That's a lot of information for a pipe only 1/2" in diameter – and that's just in your neck. It actually splits off into branches at the end in the beginning of your lumber region. Which makes it a lot harder to get cord compression in your lower back. It's actually incredibly awesome the way we were built as humans when you look at the anatomy of the spinal cord and how it branches off to every part of your body.

Today I'm just grateful that I'm here and can still walk as my cord was essentially kinked or "buckled" in one space and flattened in 2 others – and with the amount of data flowing through this amazing conduit I choose to be thankful that I can still feel – even if it's only pain.

The Pain Factor

Life is full of things: love, happiness, sorrow, boredom, anger, frustration and (cue the drum roll)… pain.

Allow me to paint you a picture of my beast known as my myelopathy.  Not only do you have pain 24x7x365 days a year, but you also have extremely limited battery on which to do anything.  Imagine your remote is low on its batteries and you have to hit it several times just to get that one click you need to watch your favorite show. Couple that with pain that changes in intensity with a gust of wind and that has to be managed by several different daily medications, pain patches and opiate pain medication, trigger point injections, and weekly dry needling which is way more invasive then acupuncture, and finally with physical therapy.  

If that wasn’t enough, factor in chronic insomnia where there are days you have only 2 hours sleep on that already dying remote battery.  And as an added bonus, you have myoclonic jerks as an added bonus to having a damaged spinal cord.  Even with medication, you never know when they will strike.  

About a month ago I was carrying a Dunkin Donuts foam coffee cup filled with piping hot coffee, only to have a myoclonic jerk that popped the top of said coffee cup which then splashed said coffee onto my sweatshirt which of course I couldn’t get off fast enough which resulted in a pretty bad 3 1/2″ second degree burn which over a month later still bears a scar.  Fun times right?  You’ve just gotten a portrait of my daily physical existence.

Now granted, I’m not saying my Myelopathy story is the standard.  Because every Myelopathy is different.  Mine is a result of 3 full levels of cord compression and an unknown factor on how long it had been there.  My best guess is since 2009-2010 and they found it in 2015.  

For those of you not in the medical field.. a little lesson.  Your neck is called the cervical spine (C-Spine for short) and is made up of 7 bones named C1 to C7.  C1 is at the base of your skull and is called the Atlas bone and combined with its axis joint is what gives your head movement.  I had cord compression between levels C4 to C7 with signal intensity in C5/C6.  Cord compression is bad enough, but signal changes in your spinal cord that are seen on an MRI is never a good thing.  If they catch it early enough it can be reversed.  

In my case it did not reverse, probably because I had no trauma or indication other that a stiff neck and shoulders since 2009, so really there was no way to tell how long I had Myelopathy let alone how serious it was.  Which leads me back to my now daily life full of pain and fatigue.

Now when something like this happens, you read everything you can find.  What I didn’t find was the untold emotional pain that comes with such a profound cost.  I can’t begin to put into words the emotional cost of this and not just me, but to my entire network of friends and family.  It’s important to address the pain – not only the physical pain but also the emotional.  Pain demands to be felt, it reminds us that we are only human.  Even with continued talk therapy, I still struggle with this on a daily basis but it’s important to remind my fellow victims of Myelopathy, that while our stories are all different, we are not alone in our daily battle.  For those of you that walk along side us in our daily battle, thank you. We are forever grateful to have any support  or a kind word that gives us the courage to face another painful day.

Insomnia Really Is A Pain In The Neck!

“Life isn’t about waiting for the storm to pass, its learning to dance in the rain”

One of the more annoying symptoms I have on a regular basis is insomnia.  The annoying part is if I can’t sleep because of pain then as the length of insomnia increases…. so will the pain and then I’m left to be an unwilling participant on this vicious merry-go-round.  On the positive side, I saw this quote and thought it would be perfect for this tidbit. 

Oddly enough I don’t ever remember suffering from insomnia.  Sure, when my ex husband and I became parents to a preemie who was constantly in and out of several doctor offices for the first 4 years – then I’m certain we both felt like we were going to die of sleep deprivation, at least at some points in that roller coaster.   But I’m chalking that up as normal for NICU parents.

So safely ruling that out I don’t believe the insomnia started until well after  I woke up with a kink in my neck that never went away.  It probably didn’t help matters that the following year my emotional well-being would be tested in ways I never could predicted.  I will say I’ve thought about some of the what ifs like if I wasn’t going through a divorce with a small child at that time, would my neck pains have been caught early enough that I wouldn’t stand here with a scar on my throat, the huge titanium plate inside of my neck (that cost more than my new car!), and the myelopathy that has plagued me since it lit up the MRI and my pain was finally given a name.  Or was it all part of some master plan?  (I’m still looking for the complaints department to demand a refund!) 😊

I think it’s perfectly normal to play the what if game.  Maybe this is a touch of the bargaining game of grief.  But something deep inside me thinks this happened to me for a reason – that it would be the biggest test of my life thus far: to accept that I never will have a pain free day ever again.

That’s a tall order, even for someone like me.  Up until I was given the news of the severity of the situation and that I would require immediate surgery, I had a lot of storms pass through my short life; and I always came out a better person because of the experience – no matter what the cost was to me emotionally or spiritually.

So why is it hard to comprehend that this storm is the black rain cloud that will follow my every move?  I’m not even remotely sure that I have the answer this early, but at least I know to put rain boots on my proverbial shopping list and keep coaching myself on the mantra:  Progress – Not Perfection!

Rikki 🌙

2017… Here We Go

So, the new year is here and maybe for the first time in my adult life I’m setting “real” goals for the year.

  1. Get Out Of The Damn House! This would include venturing out, look for Yoga and Aqua therapy classes in an attempt to not go insane from the incredible whirlwind the last 18 months has taken me on. The idea is…if I look better, I’ll feel better. At least it sounds good on paper.
  2. Socialize and stop living under a rock! Again, that’s more to do with the cord injury.
  3. Finish a quilt – Again, one of my projects “interrupted”
  4. Write! It’s good for the soul and the way to get out my two cents….and even if 1 person gets a giggle or learns something – WINNER WINNER CHICKEN DINNER!
  5. Keep my head up when things don’t go my way. I need to remind myself that it’s not the destination but the journey. The destination is the same for all of us when we cross the threshold to the next realm. Might as well take the scenic route and enjoy the view.

Now that I’ve settled on some changes – time to put it into action…. why is that always the hard part….UGH!!

-Rikki

Introductions

Like most of us, I’ve worn many hats along this freak genetic experiment we call life. Some of the hats in my collection are:

An Only Child
First time mother to a preemie (who is now a teenager!)
A Wife
A Step-Parent
An Ex-Wife
A History Buff & Genealogist
A participant in an accidental IT career
A myelopathy patient (spinal cord injury)
A craft-aholic
One of the only SANE leaves in my expansive family tree
BONUS: Fluent in sarcasm
That’s about the long and short of things. The stage is set, all the characters in this drama will be given a pseudonym to protect their identity, but not their stupidity. Admission is free, enjoy the show I call my therapy.

-Rikki (Not sure if my parents were hippies when they named me, but I’ll rock it anyways)