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.  

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