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 discouraging it is to wait for our health care “non-system” to  respond to her needs. 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 to respond.  Although she has chronic pain and can’t get back to life as she knew it before the pain, she is not giving up.  She is an empowered patient (ePatient in the current vernacular).  She is strong and fighting for what she needs.  As a physician, I ask myself, should patients really have to go through this to get the care they need? The answer is a resounding “no.”  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

Life Long Lessons

by Julie Hemker

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

As children get ready to start school for another year packed full of learning and fun, I am reminded that life is a continual classroom. As adults, the fun we experience is more often what we, ourselves, bring to to our day-to-day lives to help us remain sane.

At this point, after all the frustration of trying for months to get some relief from chronic pain,  I am  not sure how I stay optimistic and on task.  However, suffering is a huge motivator. I have been living with intense pain since February and have been on prescribed “bed rest.”   I have not been able to work (impacting my sense of self). If this is not enough, I have also been trying madly to find a  physician able to help me given my congenital condition, sacral agenesis and its complications (tethered cord and heterotopic ossification).

I push back the tears because I want to remain effective and objective.  Lesson learned; just because a healthcare facility is rated number one in the nation for a specific specialty does not mean they are the best fit for you.  After weeks of being dropped through the cracks and being bounced to surgeon to surgeon, I’ve remained hopeful this institution is where I will finally find relief from suffering.

Today it has become abundantly clear that it may not be the refuge I thought.  I’m seeking other options and widening my net.  Perhaps I should have done this initially and I can’t entertain self-doubt on top of my disappointment.  It may very well still be where I end up.  We will see.

As an empowered, proactive patient I think to myself, “I cannot be the most complex case any of these very fine institutions have treated.”  It is a failure of a “system” where charts and scans are lost and patients are passed back and forth to surgeons like a game of hot potato.  Well there is only so much any one patient should take and my threshold has been reached.   I will pursue all my options with an open mind and try not to be hard on myself.  The pain, fatigue, loneliness, anger all push me as well as my extreme hope that there is an answer and a resolution.  I have an economy size can of hope that helps me remain optimistic.

Today my voice actually cracked on the phone while trying to remain composed while talking to a really wonderful secretary and advocate for me.  There is a time and a place and I have to keep it in a little box with a bow in my head to handle later in order to remain on task and focused.  It is my “system” and has worked.  A lesson that we all learn over and over and I have learned in spades  since childhood is that life is not easy or fair all the time.  I remember my Dad telling me, in a non-sarcastic but matter of fact tone, “Honey, who told you, life would be easy or fair?”  It wasn’t one of those cliché statements parents say — although it sounds like it –but he was appealing to my intellect as a child. What I’ve taught myself is that although life may not be easy or fair it is how we deal with it that determines the outcome.

So…I remain steadfast on my journey to resolution.  It does not mean I’m happy about it.  It does mean I will find something to make me happy and not let this own me.  I own my feelings and its okay to be sad and disappointed.

A story from my childhood comes to mind.  When I was about four, coloring on the front steps at home, my Dad watching from the kitchen window, a boy rode his bike up to our drive way.  He stopped got off his bike and made fun of my legs (skinny due to lack of muscle development).  I stopped coloring and put my hands on my hips.  Then I stomped my little foot and told him he was the one with the problem and that God made me perfect because my Mom and Dad said so.  I guess I punched him too even though I don’t condone violence.  I guess he went off crying and I went back to coloring happy as ever.  That is my personality.  I guess I am a bit of a spit fire.

Since I love music and everything in life reminds me of a song let me share this by Twisted Sister that best reflects how I feel:  “No We’re Not Gonna Take It.”  Picture me stomping my foot, with my hands on my hips saying:

“Oh We’re Not Gonna Take It

Oh We’re Not Gonna Take It

No, We’re Not Gonna Take It

No, We Ain’t Gonna Take It

 

 

 

6 COMMENTS

  1. Julie,
    Sorry, to hear you have to deal with so much pain praying you feel better soon!! I can also understand when you tell about the time the boy was picking on you over your legs and I love your response! I have also dealt with people laughing at my legs due to lack of muscles from a spinal disorder.

  2. Julie,

    You should have been born with red hair cause your spirit comes through just like your mother says. Keep up the positive attitude and try stomping your foot in your mind. It works jsut as well.

  3. I am pleased to know ePatients exist. When I think doctor, I think negligence, so I am not prone at all to trusting them. Beyond skepticism is self care, good detective work, and some spiritual focus.

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