by Julie Hemker

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

Living with chronic pain…huh what to tell?!  Growing up with Sacral Agenesis and having 49 surgeries so far, pain is no stranger to me.  I am “used” to coping and moving on and pushing through whatever is in front of me and coming out on top.  I’ve accomplished what I’ve wanted in life and I’m happy.  When I was younger and people asked me what I wanted to be when I grew up I always said, “happy,” before listing professions.

Now I find myself in a conundrum. Pain that will not leave and cannot be corrected surgically or through conventional surgery.  I have high hopes for the Spinal Cord Stimulator.  I remain optimistic because it is my very nature.  Statistically it is successful in 70% of patients which seems a high statistic and provides on average about 50% pain relief which is more than the medication provides and it’s more natural.

What does it feel like to be in this place in my life?  Well, pretty awful.  Although positive and, ultimately, a happy person, I cannot deny my feelings.  I fight them off with all the positives I have in my life – like my husband, dog and family and a couple really close friends who listen or hear me.  Otherwise I spend my days unable to work which provides such purpose and value for me.  It is difficult to do most tasks even taking a shower.  Activities which are simple and necessary to keeping up a household and bring me pleasure I’m unable to attack.  I sit, walk around a bit, lie down when I need to, with a whole load of things I cannot do … and “cannot” has never been in my vocabulary.  But honestly right now I am limited and have been for some time.  It is important to share this so that I and others know that we are not alone.  I spend my day waiting for my husband to get home.  I’m being brutally honest because I want the truth of chronic pain to be shared from a non-addict perspective.

It certainly does not help when a state legislature imposes regulations and rules that has had (the probably unintended) consequence of creating an atmosphere that makes a patient feel like she is perceived to be an addict, a drug seeker, or seller.  I never knew about this stuff until I actually had to see a pain doctor.  I was naïve to it.  Now I feel victim to the treatment or shall I say lack of treatment from my clinic –  from which I am switching.

For me, growing up able to always pull through and come out on top makes it difficult to admit to chronic pain.  I view it as a weakness for myself to have to seek help with this.  This is completely new to me and I don’t like the culture I’ve been thrust into.  Additionally, having very, very few to talk to just for a second even, has left me feeling very alone in this struggle.  I know no one can understand, but there is a thing called empathy which goes a long way.

I’m lucky to have a couple dear friends along with my family and honestly Stella our Lab makes me laugh and soStella - Julie Hemker's lab happy throughout the day.  Still, the minutes drag on and on and on.  Yet since I am the Queen of optimism I pull through accepting the feelings I’ve shared above.  One cannot be truly happy if they are not true to themselves first.  It does not make me negative or a pessimist to share feelings, it makes me HUMAN.  It’s refreshing, in some ways, to just blurt my feelings out like I have done here.  I won’t be able to take them back and it feels freeing to know I have stated what life with chronic pain has been like for me.  This won’t be the first or last piece on the topic, I am sure.

It is important to “cowboy up” and realize that after a deep breath and a little venting (thank you) “Every little thing’s gonna be alright…” like the famous words of Bob Marley in his famous song “Three Little Birds.”

Links to the other posts by Julie:

Note to My Pain Clinic:  When I am in Pain, Don’t Treat Me Like an Addict

Another Speed Bump in the Wild Ride of Sacral Agenesis

Sunshine: The Joy of Getting Back to Normal

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




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