Keeping focus

It’s 2015 and the first surgery of the year has been scheduled.  February 18th.  This year it’s my turn to have surgery over the February break.  It seems each year one of us takes a turn.

Calendar

So while my friends are returning to school tomorrow, counting the days to the February week, I am not quite as excited.

It’s only a vein.  A large, painful, varicose vein to be stripped out of my right leg.  Large enough that it requires an operating room.  But it’s far from the first.  My veins are crap.  This is almost certainly connected to the PTEN mutation that caused our Cowden’s Syndrome.   My veins seem to be a generation less severe than my girl’s AVM.

I had the first one stripped in my early 20s.  Before I knew of Cowden’s.  Before there was Meghan.  The next 2 were done in the years that led into my early 30s.  Then 4 years ago I had 5 done through an in office procedure at NYU.  There they were just “closed” and not removed.

Vein_Anatomy_112

Maybe they are sped along by a life that requires so many hours on my feet.  Maybe genetics have sealed their fate already.  Not a single doctor I have seen has ever claimed to know for sure.  And that’s better.  I hate when they guess.

I sometimes wonder when I will run out.  I wonder how many they can close off or take out before…

They just keep telling me the ones they are taking out are already broken.  Backflowing.  Not doing their job anyway.

Doesn’t keep me from wondering why they keep breaking.  At 41 I do wonder how this bodes for the future.  But, it’s one of the things I have consciously chosen not to research too much.  Because I can’t control it.

I have tried compression stockings, and I wear them when the pain and pulsing gets really bad.  But, I hate them.  And a religious stint of wearing them a few years back saved me nothing, and caused me to be very angry.  All the time.

They are not nearly this glamorous.  Trust me.

They are not nearly this glamorous. Trust me.

So for now, it’s the last thing I feel before I close my eyes at night.  It is the first thing I feel when I open them in the morning.  It is the reason I often keep moving, because the resting makes me more aware of them.

The pain, the pulsing, the aching is maddening.  But it certainly reminds you you’re alive.  And, as cliché as it sounds – it reminds you that it could be worse.  Much worse.

Our vascular issues in this house, (although Meghan’s still terrify me,) have been confined to lower extremities.  And I flash to our friends in Australia whose 20-year-old fights vascular malformations in her brain.  Over and over and over, with a resilience in mother and daughter I marvel at.

Perspective.  It’s all about perspective.

perspective

Meghan has 2 appointments coming.  One is a follow-up for her vascular surgery in November.  The other is with her endocrinologist to try to tease out the continuously unbalanced thyroid hormone levels.  I have three in February – before the surgery.

It’ll be a busy winter.

So glad we chose to distract ourselves from ourselves with the “Jeans for Rare Genes” fundraiser.  Always good to keep it focused somewhere else.

https://www.eventbrite.com/e/beating-cowdens-first-annual-jeans-for-rare-genes-fundraiser-tickets-14130024283

Rare Disease Day Fundraiser

Good lessons that I teach my daughter.  Good lessons I will remind myself repeatedly when I am tempted to rant about another stint in the operating room.

Better me than my girl.  And it could always be worse.

Maybe we’ll have a different countdown to the February break.  Maybe we will count down until February 15th – the date we hope to raise enough money to make a difference in some lives.  The rest of the week… we’ll skip that for now.

One thought on “Keeping focus

  1. Your story is so inspiring!!! I wish you and your family a healthy and happy new year. (Please add Paypal your donation page. So many people are more comfortable with that and prefer it to using a credit card.)

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