This is part 7 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 some good new, her vision problem that led to a fall with serious consequences has been addressed.  Life is Groovy. You will find links to the first  six post at the end of this one. Pat

By Julie Hemker

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

Time changes a person – either for the good or bad. We each have that choice. I felt compelled to express my fears and loneliness in my last post. I never could have imagined that anyone would write so many dear and honestly, meaningful, loving notes to me. Most were from people I’ve not met but feel cosmically connected to now. Thank you very much for responding – it meant a lot.

My friends wrote private notes, knowing that was the hardest thing for me to do – open up like that. It was freeing and necessary. I don’t feel chained to the concept of always flying through life with glee. The one thing I do embrace is the concept of, “express don’t repress.” I also strongly believe a person has to move forward to the next step – being proactive for positive change.

Not surprising, one of the songs which defines me is Simon and Garfunkel’s “Feelin’ Groovy.” Who isn’t uplifted with the words, “Slow down you move to fast, got to make the morning last, just kickin’ down the cobbled stones, lookin’ for fun and feelin’ groovy?

It makes me smile just typing it. The past couple weeks have been good and my perspective is changing with the shift in my medical action plan. It’s time to move through this trauma. It’s time to enjoy the outdoors and the morning!

Exciting news! My vision was a huge culprit in the dizziness, inability to focus, vertigo and headache. It turns out I literally couldn’t see out of my right eye – secondary to the spinal leak. Plus my astigmatism changed so drastically that the Ophthalmologist has to adjust the prescription incrementally. This explains why I fell off the sofa and sustained the concussion. It’s nice to have a reason for falling and not just feeling foolish.

When I complain about something I really do mean it. I said, “I can’t see.” Now it’s like a whole new world for me. I can read again without getting sick to my stomach from the movement of my eyes. My vision was so very poor. Apparently the eyes are quite sensitive to changes especially involving the nervous system. Luckily, the optic nerves are intact as well as the muscles and there is no fluid behind the eyes. So that is great news.

Mark and I wrote out all of our questions for the neurosurgeon and listed all the symptoms to be fully prepared for the appointment. There is no doubt I have orthostatic headaches (headache worsens upon rising) but that is not a surgical issue. That requires blood patches, which I previously discussed is a painful but necessary procedure. It turns out there are possibly two diagnoses. One is the leak and the second a tethered spinal cord (cord and nerve roots fray causing a myriad of neurological symptoms in the legs and urological system).

Ironically, tethered cord does not scare me like the other. I’m very familiar with the surgery, I’ve had 5. However, there is a difference this time. To the left of my spinal cord is a lump which was thought to be a pseudomeningocele but is now thought to be a cyst. Likely it is a fibrolipoma (where soft tissue becomes fibrous) and is commonly associated with tethered cords. It can be found within the cord itself or just outside.

The doctor was “intrigued” with the growth and did a very thorough palpation. Of course, I understand why, but I do have to laugh. He pushes and says, “So this hurts?” Then it’s as if doctors think they can pull a fast one and pushes a couple more times to which I say, “And that hurts and that hurts too.” We all giggle because if it hurts, it hurts. Well, the pain has been exacerbated since the palpation but it was necessary.

I’m scheduled for the myelogram on June 19th. Having it on the schedule removes the anticipation. There’s no turning back. It’s necessary and the only diagnostic tool the physicians can use to have any hope in seeing changes in my anatomy. Sure I’m shaking like a leaf inside and it will be one long day, followed by a couple others until the iodine they inject into the nervous system dissipates – but it’s going to be okay.

A Lab and her pool

My surgeon is wonderful and the last one to have a surgical view of my spine about four years ago; there is comfort in that. I’m not naïve, so we are seeking a second opinion with the number one hospital for neurosurgery in this country. It would be foolish not to with all the surgical intervention I’ve had. All 10 of my spinal surgeries have occurred since I was 21, which when I did the math is kind of a lot – or at least that’s what I’m told. Basically we’re all going through this together. What an adventure or should we say roller coaster.

Thank you for taking this ride with me. The last post helped me unleash my inner fears and concerns – it was a type of acceptance. I still have all those feelings but I feel open to express them – such freedom!

I’m enjoying visits with family and Stella’s first day at the pool. We brought out the baby pool for her to lounge in and get a break from the heat. I wish she had a real body of water to express herself as a lab. It is moments like this that help us all enjoy life even when it is rough.

And so  as the lyrics say, “Life, I love you, all is groovy.”

 

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

7 COMMENTS

  1. Dear Sandy,
    Thank you! You are humbling and fantastic. Plus we do love the same music but life is wonderful and quite groovy! Wishing you all the happy heartbeats as well!
    Best,
    Jules

  2. OK Julie, you have gone and done it again.

    Your writing touched my heart, put a smile on my face and a catchy happy tune that won’t get out my head.

    By the way I can’t stop singing, “Feeling Groovy.”

    In the car, to my wife, to my kids, at the store and now to my dogs.

    Your positive outlook is contagious.

    So I have only one thing to say to you.

    Do more of it!

    Wishing you the best of happy heartbeats!
    Sandy

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