Everyday is filled with questions that center around this disease that has irrevocably changed my life forever.

  • What’s the weather forecast?  Humid, Hot, Cold, Rain. Snow – Guarnteed bad pain day.
  • Will I actually get quality sleep?
  • Who will I lash out at?  (Not that they have done something wrong, it’s my frustation with my disease)
  • Will I notice a new symptom or an increase in an already present symptom?
  • When will the next relatively good day be pain wise?
  • When is the next blow going to hit me like a shock wave?

It isn’t hard to wrap your head around being in pain constantly when it’s your reality – what is hard is trying to find the courage to continue to try and have meaningful experiences with a positive attitude.  

It’s absolutely excruciating to not be able to take my son on vacations or even a museum just because I wouldn’t be able to walk and stand for even an hour.  That doesn’t even take into account the pain that comes from transit – even little bumps in the road or ripples in the roads that most people can’t even feel.  It breaks my heart that I’ve gone from high energy used to travel every year to there are days I can’t even leave my bed.  My interactions with my son have been the biggest casualty of this disease.  He is fortunate that his father has made sure he doesn’t go without those experiences that no doubt will shape him as he transitions throughout life.

Every week I see my counselor and she has been a god sent.  By far the emotional collateral damage is exponentially worse than the physical.  The logical side of me which was my primary skill I used in my career so I’m well versed, understands everything in black and white and this entire disease’s effects into all my areas of my life is an easy to accept.  The emotional carnage is murkier than the Muddy Mississippi and emotionally I teeter between denial and anger.  She definitely has her work cut out for her.

Yes I feel robbed and cheated, but I feel that my family – especially my son who is my North Star, has been cheated the worse.  That makes me very angry.  My pregnancy was full of complications.  There was even a time during the first complication the doctors feared they may even lose me, but I didn’t care about me, I was willing to sacrifice myself for him.  I fought very hard to bring him and keep him in this world – even then he was still 8 weeks early.  He spent his first Christmas and New Years Day in NICU – certainly not what any parent wants for their child.  His first 4 years was a constant rotation of doctors and countless medications and breathing treatments.  Then the clouds lifted and life was finally perfect and peaceful at least for a while.

Now I find myself in shambles – like that rickety bridge you contemplate crossing.  There’s a part of me that doesn’t want my son to see me deteriorate into a soul trapped in a broken body that can’t be fixed.  I don’t want that to be his most prominent memories of me.  But being that this started when he was 11 – I’m forced to concede that I don’t have any choice in that matter.  I don’t want to be his burden, even if it’s out of love.

But for now, he gives me the courage to face another painful day.  

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 🌙