living with sacral agenesis complications

Time has passed since I last wrote.  Why?  The post-operative phase of this process proves challenging and it will be lengthy.  Funny how I couldn’t wait to be on the other side of the spinal surgeries and I thought I could be eternally patient.  Good news!  I have passed the first of three hurtles in this recovery process.  I started physical therapy this week and I’ve started walking with my walker and doing domestic chores around the house.  Ahhh…finally a sense of normal.  Every day I’m able to shower and get ready for my day, however limited it may seem to those around me.  Each task accomplished feels like a win!

It’s as if I’ve found myself again.  I’m back!  I find myself laughing and smiling more.  Of course, the pain is slowly coming down which helps.  Rarely do I lay down for naps but do when I need one.  By the end of the day I’m exhausted.  It occurred to me, just yesterday, that perhaps I need to pace myself a bit more.  Although I can do more I need to be at a slow consistent pace.  As I’ve said before, “the turtle wins the race.”  Already past stress fractures in my foot and femur are flaring up.  I never even considered being on bed rest for nearly a year I’d have to ease into walking.  So…I’m still able to challenge myself and remain on track for recovery only I will do it the correct way.  Pushing and pushing to the point of near exhaustion proves that, yes, I can do certain tasks, but what does it say I’m doing to my body?

The most wonderful thing happened.  I was able to have my first “outing” besides doctors’ appointments and surgeries.  All I wanted (and I know this sounds crazy) was to go to the mall.  It’s been nearly a year since I’ve seen real merchandise in stores.  We were able to go to the café at Nordstrom’s and shop at a couple small places.  Uh…I was so happy – interacting with people and feeling “normal” was fantastic.  I’m glad we did this early in the month before it’s too hectic to get out and I just get to go out on little “outings,” with my husband.  Already we’re getting a life.   Just the fact that I can eat in the other room and am not on bed rest is progress.  We watch TV out in the family room because I don’t need to lay down so much. Finally, Mark and I are able to enjoy life more and the stress is lessening.  Mark doesn’t have to worry, as much, about laundry and meals and I feel important.  It feels like the “old me” making dinner.  I love to cook.  It’s an expression for me so it is an outlet which I’ve been missing for over a year.  It’s exciting and I’m so grateful to have made it this far and cannot wait to continue on the path to recovery.

It seems as though the holiday season is filled with joy for me.  No matter the holiday celebrated it’s nice to share love and thoughtfulness with those we love.  This year I’m able to actually decorate and have enjoyed creating my center piece on the table – a winter wonderland it is.  Our mantle sparkles with glitter and greenery – truly magical.  It’s wonderful to share with others and enjoy ourselves.  Even our dog, Stella seems more joyful.  What a wonderful time of year, for me, to experience recovery.  It may be slow but I’m patient.  The pot of gold at the end of this rainbow is sparkling with majestic powers I cannot even imagine.  The song which comes to my mind the Beatles’“Tomorrow may rain but I’ll follow the sun.”  So as this recovery has ups and downs it’s keeping my attitude and focus on the positive which will get me through to full recovery.

Links to the other posts in this series:

Time is on my side, yes it is…

Road Trip (My Life with Sacral Agenesis) 

The Beginning – Julie’s Mom’s Story 

A Day in the Life with Sacral Agenesis 

Julie’s Mom’s Story – Tackling the Birth Defects, One Step at a Time 

My Life After the Fall 

When You Are Feeling Down, You Need a Hug

Time Will Tell (What’s Next? Dealing with Sacral Agenesis)

When Times Get Tough-Watch a Movie:  the Power of Distraction in Chronic Pain

Growing Up with Sacral Agenesis:  What It’s Like to Have a Pediatric Problem in the World of Adult Medicine

In Chronic Pain and Playing the Waiting Game

Failure of Transition – Going from Peds to Adult Medicine with a Congenital Condition

Oh We’re Not Gonna Take It Anymore…

Raising a Twin with Sacral Agenesis – A New State of Normal

Eureka! A Surgeon is Found – (aka Julie’s Happy Blog)

Happy Birthday Jules! 38th Birthday, 48th Surgery

The Flood


    • Hi Angela,

      How very kind! I will respond to you on twitter too and thank you for your kindness. It’s people like you who bring even more sunshine to life and your a gift to everyone! Thank you again.



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