This is part 8 of a series of posts by Julie Hemker, a young woman born with sacral agenesis, and her Mom, Charlotte Schild.  In this post, Julie shares how she uses “Movie Therapy” to deal with her chronic pain due, in part, to a newly diagnosed heterotopic ossification.

So much has transpired since last I wrote.  I had my myelogram last week which was a major milestone for me.  My anxiety regarding the procedure is rooted in the past, but, as always, I made it through.  The couple days following the procedure were uncomfortable as the iodine they inject in the spinal canal takes a couple days to leave the CNS. Also,  I was told to drink a lot of water and caffeine for the spinal headache so that the spinal fluid would regenerate more quickly and reduce the impact of any small leak that may have been caused by the spinal puncture.

In the past week, it occurred to me that although, I write about my life with sacral agenesis, I’m certainly not alone in medical struggles.  This does not minimize what any one person is handling medically, rather it provides strength knowing that I’m not alone.  There are many people who have it worse or face different challenges.   Often I write of my family and friends, our sweet dog Stella and my faith which keeps me centered and filled with hope.  I spend my days, with Stella listening to her snore from the other room. So what do I do to pass the time and keep my mind from filling with anxiety and doubt?  Besides the above mentioned people and events which overwhelm me with love and warmth, I watch and re-watch movies.

Not just any movie.  Yes, I love “chick flicks” that make me feel good.  It warms my heart to see happy endings.  I find that, although I am quite deep, I stay away from too much drama – isn’t life filled with enough?  I say that jokingly but it is nice to be entertained.  Although I know our movie collection by heart, there is comfort in watching a couple choice movies repeatedly. I watch “Dolphin Tale” and walk away with different messages each time.  I love this movie because it is about over-coming obstacles for the injured dolphin and many of the different characters.  It’s about the triumph of taking a path most others don’t take while accomplishing something because of inner strength and that which we draw from those around us.  It’s about love and family and not giving up.  It’s about staying the course against all odds.  It gives me faith and hope to tackle those challenges in my life and hope that when I get better, I will be able to go swim with Winter, the dolphin who beat all odds.  She’s in Clearwater, FL inspiring and motivating people to not give up.

Also I watch “Blind Side” with Sandra Bullock and many others.  This story, based on true events, gives me faith in people and the goodness in their hearts.  Both of these films, watched repeatedly, comfort and give me strength to keep going and to be a better person.  Even though I talk about my strife I feel all of us are connected.  Like I always say, “Everyone’s has something.”  It’s wonderful to be open and share – hoping it gives someone else strength or inspiration.

Speaking of inspiration and motivation, I need as much as I can get from the findings of my myelogram.  They found a heterotopic ossification (when bone forms in the soft tissue from trauma or hematoma).  This is the lump to the left of my spine at L4 causing debilitating pain.  Additionally, it is thought I have a tethered spinal cord (spinal cord become frayed) and stenosis (narrowing of the spinal canal) probably from scarring (insidious onset).  The good news is that the CSF leak is likely healed which is why I can handle light and other stimulation which I was unable to handle earlier in the year.  All the problems are at the lumbar level of the spinal column.

The heterotopic ossification is an actual piece of bone in the soft tissue and is paravertebral (within or near the vertebrae) and represents significant risks in removal.  Mine is in the “advanced phase” where it is matured to the density of bone and is symptomatic.  It needs to be removed.  I’m seeking, as mentioned in the last post, a second opinion from another facility.  I have had 10 spinal surgeries and need to be proactive in my own care to reach out to other physicians.  I need to ensure that whoever intervenes is confident, skillful and aggressive congruent to the needs and problems presented.

At this point the pain has been continuing for so long and the myelogram increased it, so the movies also serve as a great form of distraction.  Distraction is wonderful for pain management as well the snoring from Stella at my bed side.  I have faith that the correct path will present itself.  I’ve done and am doing the data gathering for those involved and trust their brilliant minds will decipher the code that is Julie with a “unique presentation” of sacral agenesis.  I found this phrase in some of my medical charting – it’s amazing that it gets more unique than the sacral agenesis itself.

It reminds me of an appointment prior to a very significant surgery in 2009.  The surgeon said to my husband, “I bet you didn’t realize you were literally marrying one in a million did you?”  To which my husband, without falter replied, “Oh yes I did but for very different reasons.”  I guess that sums it up.  The love surrounding me leaves me in awe and feeling like the luckiest woman ever.  Ironically the Beatles, one of my favorite bands, state it perfectly in their song, “All You Need Is Love,” when they say, “Nowhere you can be that isn’t where you were meant to be.  It’s easy.  All you need is love…love is all you need.”

 

You can read Julie and Charlotte’s other posts here:

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)

 

3 COMMENTS

  1. Dearest Char & Jules, you have always been amazing to me, but the blog you are doing for others is so dear. This bible verse fits you both. “Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.” 2 Corinthians 1:3-4
    You have found your ministry.

    Love you guys, Janie
    Janie

  2. Julie,
    I am always looking forward to read your post. I love you very much and I am so proud of you. You are so amazing and such a great example to all of us. you gave me the strength to go beyond the possible. Doing this crossfit challenge for a cause is the best thing you inspired me to do. I know you are in great pain but each time I talk to you you always manage to control it. Talking about love, you are indeed loved and we can feel it when we talk to you. I am so glad you allowed us to walk with you in this journey. With much love Nora

    • Dear Nora,
      You are so kind and the only person who would enroll in a bootcamp to push yourself and think of me. That is just beautiful and so personal to choose me as the cause. You don’t know how much your voice on the other end of the phone eases my pain and gives me a needed distraction of friendship. Friends so dear make me rich! Thank you for sticking with me on this journey as not all have what it takes. You are one of a kind and I totally adore you my Bella!
      Love,
      Jules

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