This is part of an on-going series of posts by Julie Hemker, a young woman born with sacral agenesis, and her Mom, Charlotte Schild. In this post Julie describes how frustrating it is have to wait for the health care system to  offer a solution. part of the problem is that she has a rare congenital condition and our “system” has no organized way to help transition patients from pediatric providers to adult ones.  Julie is one of the most optimistic people I know, but her optimism is being severely challenged by this “Failure of Transition.”  Should patients really have to go through this to get the care they need? As always, I am grateful that Julie is sharing her story with you, my dear readers.  If you would like to read the whole series, please scroll to the bottom where you will find links to the other posts in this series.  Pat

 

by Julie Hemker

Julie Hemker, author of “Living with Sacral Agenesis” series on TDWI

I keep waiting to write a post with great news of a soon-to-follow resolution.  But it hasn’t happened yet.  So here is my next entry, uncut.

What do you get when passion for life and people is over-shadowed by a medical system which has forgotten someone – me?  You get a teary eyed, broken-souled woman who feels like a lost little girl inside.  It’s as if big foot stomped on all my dreams and hopes.  Why am I allowing myself to feel these feelings?

I believe it’s important to recognize our feelings – giving them room to be expunged.  I tried for the past weekend and today to just take a “break” from thinking about my next strategic move with doctors and their secretaries and the “system.”  It was so nice to be away from it.

I spent the weekend making a “Baby Book” for Stella, my yellow lab.  Wow, how wonderful to be lost in a world of photos of Stella telling the story of our first year together.  And yet here it is the night before I’m going to get back on my proactive and empowered horse (figuratively speaking) and fight for myself.  I’m afraid.  I’m dripping wet in tears of fear and loneliness.

Yes, tomorrow I will make the appropriate calls.  I will sit anxiously next to the phone for calls which should have come through last week.  I will maneuver through the network to find what is best for me and my medical diagnosis.  It’s taken me to my wall of complete exhaustion.

Stella, the yellow lab, is sad too

I know some how I’ll rally – I always rally and find a way.  This medical challenge has proven to be just that.  Why is it not working out?  I thought taking time away from the stress would leave me clairvoyant to decide with certainty my next move – it has not.  In fact I feel as if I’ve come around some corner where not hearing from secretaries or doctors has led me down the path of self-denial.  Could it be me?

Then I try to get up and do an activity in my house and I’m very painfully reminded of the tethered cord with the radicular sharp pains shooting through and down both legs to the tips of each little toe.  I am reminded, as I try to sleep, of the heterotopic ossification, by lightly touching a nearby body pillow, of the searing pain from the slightest touch.

Perhaps someday there will be a “gatekeeper” to help those with rare congenital birth defects transition from pediatrics to the adult healthcare world.  They are so different.  It is still a struggle to find a surgeon who practices pediatrics and adult medicine in order to serve those who, won’t one day, with turning a certain age, recover from life-long disorders. In fact, aging makes sacral agenesis, for me, far more complicated.

Yet finding the right physician is impacting me to this degree.  Believe me I started out gung ho and full of energy.  I will get there…eventually and totally drained emotionally and physically.  There has to be a way and if my writing can facilitate discussion around this matter then my tears are not worthless and they will hopefully save someone else from crying them.

There is little anyone can do or say to help and I find that I don’t share it all.  Is it really fair for everyone else to carry this burden as they carry the burden of helping take care of me?   I share the surface and my voice and the little I talk probably confirms with those around me what they already know – I’m broken down.  Usually I have an upbeat way to end these entries yet today I can’t find one.  What I can say is that I take solace in the words from Sarah McLachlan’s song, “Angel,”

There’s always some reason
To feel not good enough,
And it’s hard, at the end of the day.

I need some distraction,
Oh, beautiful release.
Memories seep from my veins.

Let me be empty,
Oh, and weightless,
And maybe I’ll find some peace tonight.

“You are pulled from the wreckage,
Of your silent reverie.
You’re in the arms of the angel,
May you find some comfort here.”

It sounds so lovely to imagine resting in the arms of the angels.  Tonight I fall into their wings and tomorrow will be better.  It will be I know it will.

 

Links to the other posts in this series:

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

 

 

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