This is part 10 of a series of posts by Julie Hemker, a young woman born with sacral agenesis, and her Mom, Charlotte Schild. In this post Julie describes what it is like to be in constant pain from complications of a rare condition and to have to wait for the health care system to  offer a solution. Julie is one of the most optimistic people I know, but her optimism is being severely challenged by The Waiting Game.  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

Time and time again I’ve said in my head, “Patience is a virtue.”  Repeatedly I remind myself to be patient with my medical situation.  What do you do when your patience has run out and distraction is difficult to find?  How do you maintain a positive, optimistic mind set when you’ve been waiting so long for resolution?

I’m on my 6th month of bed rest from first, an assumed CSF leak and now diagnosed tethered spinal cord, stenosis and a heterotopic ossification (where soft tissue forms into bone) at L4.  I’m accustomed to medical trauma, pain, limitations and set back being born with sacral agenesis and undergoing over 40 major surgeries.  Luckily I do have an innate inner strength and ability to see opportunity where others see road blocks.  It feels so different this time.

I am very proactive and have identified and am in the system at the number one hospital United States for Neurosurgery.  They have been absolutely wonderful.  The problem?  It has been trusting and depending on doctors in my current system that were not right for me and my current situation.  Luckily I realized this and proactively sought outside help.  I believe in being my own advocate.  If I don’t do it, who will?  This is my life and I have to do the work to land myself in the hands of the best surgeons to address my diagnoses.  I’m so close to getting a date for the consult and pending surgery.

In my heart I have the upmost faith in all the work I’ve done to ensure the best doctors treat me.  I have faith it will all work out, in its time.  It’s like the light at the end of the tunnel is starting to peek through, I’m just exhausted.  I’m exhausted physically and emotionally and my work is not done.  There is no sigh of relief until that appointment is set and we are on our way.  It’s like holding your breath for so long that you feel dizzy and unable to think.  I rest on my past experiences, which has been exhaustive, to which serve as proof – I will make it.  I rest in the arms of my husband and the consoling words from my parents, family, in-laws, friends, yet there is a lingering loneliness.

I think I’ve spent so much time being rock solid strong to get through this acute situation that I haven’t allowed myself to have an emotional response.  I get upset and have bad days.  It feels so different today.  Perhaps it’s because the end is so near I can almost taste it.  There are no words to make me feel better and it has to be frustrating to those around me who love me.  It’s as if my spirit is a flickering light.  It will never extinguish so I’m not worried about that.  I just have to make it through today.

Being in situations like this I guess we have to focus on one moment at a time.  I know this to be true.  We feel empowered and in control of our situation if we make a decision for ourselves. I decide today, to just make it through the pain and exhaustion of today.  I decide today to accept the love offered.  It’s so easy to shut down at this point.  When I said, I would crawl to get the health care I deserve – I was not kidding.  I am on my knees at this point needing all the support to get up and back in my bed.

I have my phone next to me at all times, anxiously awaiting “the” call to get me closer to relief. I am optimistic and hopeful just so thoroughly worn out to overtly proclaim these things as I usually do.  My heart bleeds for help.  I’m not a quiet person.  In fact, I’m quite articulate and proactive but my voice feels very quiet and I hear little except the whispers of hope which give me the strength to make it.

No one else could put it better than Tom Petty in his song “I Won’t Back Down.” Petty says,

“…Gonna stand my ground, won’t be turned around, And I’ll keep this world from draggin’ me down, Gonna stand my ground and I won’t back down.”

As he reminds me,

“Hey baby, there ain’t no easy way out, Hey I will stand my ground, And I won’t back down.” Thank you, Tom Petty for reminding me to stay strong.”

 

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

11 COMMENTS

  1. Dear Jan,
    Hi! Oh we are family don’t ya think? What you said was more than kind and very humbling. Thank you. It’s the spiritual faith that gets me and our family through and the best husband in the world. I am very lucky in love. You are right and the BEST Mom any girl could ever wish to have. When you call me a girl, oh I feel so young :) Sending you a hug.
    Love,
    Jules

  2. Hi, Julie…you are an inspiration!!! Unless one has lived in chronic pain, they can’t comprehend the damage done to your spirit, personality and quality of life. You deserve relief finally from the pain and the ability to jump out of your bed and dance, dance, dance to your music!! How you keep such a positive outlook is amazing and I so admire you for it. The saying that we are spiritual beings having a human experience always makes me think of you; you are an angel and I believe there will be magic yet for you. You are surrounded by people who love you and pray for your physical healing every day, you’ve got the spiritual and emotional part covered, and you have the best Mom any girl could even wish for…I love you both, Jan

  3. your just as amazing now as you were as a little girl.. i think you inherited a lot from your mom. hope you get your call soon
    shelly

    • Shelly,
      You brought the absolute largest smile to my heart and of course I called Mom to read what you wrote!! Growing up with you in Riley Urology and still having you in adult hood is priceless. We have a history that is so deep and I really do love you Shelly. I hope to get my call soon too!! Honestly this distracted me with a huge smile in my heart as well to tie me over :) You’re right, my Mom is and has always been my rock! She is the same Shelly. We need to have a group hug next time I down there.
      Love,
      Jules

  4. Hi Julie,
    You are truly an inspiration to us all with your positive outlook even though your pain is great. I love that you will not stop fighting to get what is right for you, but also how it wares you down physically and emotionally which I can so empathize with. I hope you get your date real soon for the consult and for the pending surgery. You are in my thoughts :) Keep positive Gill and Lee :)

    • Dear Gill and Lee,
      I’m so glad we’ve “met” and are sharing and growing closer. You have the strength and fortitude inherent in us and anyone facing major medical challenges. I hope the best for your time at the convention and to talk soon. I will keep you posted on the call and any news!
      Love,
      Jules

  5. Hi Julie,
    Thank goodness for the Olympics. 17 days of happy positive distractions.
    I know that you were a competitive swimmer and love the way dolphins swim.
    So your mission if you choose to accept it is to be throughouly distracted watching the Olympics and other.
    This is not a mission impossible because the word “impossible” is not in your vocabulary.
    Can’t wait to see the swimming events today and hear what you think!
    All the best!
    Sandy

    • Dear Sandy,
      Oh you do know my love of the water and the freedom feeling swimming with the glee of a dolphin :) I LOVED the swimming! And have enjoyed and am enjoying the Olympics. It’s amazing what tenacity, talent and strength produce!!
      Best,
      Jules

  6. Julie,

    We’re all allowed our quiet times and you have had to make noise far more than many of ever dream of for medical needs. May you get your call soon and may you have relief from pain and exhaustion! I love that you so often have a song to relate to life. Love you!! –KVB

    • Dear Kristel,
      Did you think I wouldn’t know who you are? I figured it out immediately! We always enjoyed music together in college. Thank you for your kindness and all your encouragement and love since we’ve met. I hope only goodness for you Kristel, my not too far neighbor!
      Love,
      Jules

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