This post is part of an on-going series of posts by Julie Hemker and her mother Charlotte Schild sharing what it is like to live with Sacral Agenesis. Links to the other posts can be found at the end of this article. Pat
by Julie Hemker
“Every day is a winding road…” – Sheryl Crowe
Sheryl Crow’s lyric accurately describes my life. Being born with Sacral Agenesis, a rare congenital spinal birth defect sounds convoluted indeed. Indeed, it has been. Now at 37, I face different challenges than I did during childhood.
My parents said I had a “mission” to do something. They knew not what, just that I was unstoppable. I plowed right through all medical challenges, not without suffering, but always with a smile! That has not changed about me at all. Now, the struggles impact me differently.
Let’s face it, being a child you have no cares–no mortgages, car payments, or other responsibilities. Life for me was surgery upon surgery and and recovery so I could get back to school (which I LOVED) and my friends. My parents had all the responsibilities, bills, mortgages, car payments, raising 3 children, one with Sacral Agenesis. They made it look effortless–some parents have a way.
Now, as an adult, recovering from surgeries or in my current situation a spontaneous Cerebral Spinal Fluid Leak comes fully loaded with adult responsibilities to fulfill while also maintaining my free spirit that keeps me going. Now that seems to be ironic. Still I do it. It keeps me balanced.
This CSF leak started at the beginning of the year. It is at the base of my spine, at approximately L4, with a pseudomeningocele which is easily palpated. This is actually good news because it gives an idea of where the leak is along the spinal column.
In 2010, I had 2 spontaneous CSF leaks – one at the base again and another at the neck after a case of pneumonia. This took me to the Cleveland Clinic for myelograms and several blood patches which closed the leak. I think of it like fixing a leak for cars when they have flats. This analogy makes me smile and that is important. I’m smiling now thinking about it! But I do think it is too bad medicine hasn’t developed a pill that goes straight to the dural sac, isolates the hole, and plugs it. It would be so much easier. But, if this were possible it would mean that we wouldn’t be protected by the blood brain barrier – so important to prevent meningitis.
Now, today, this very moment my confidence has been knocked down as last week I fell in my house. Oops. Talk about an ego killer. Also my leak got marginally larger with onset of increased nausea, tinnitus, stiff neck and eye pain. I cherish every percentage of recovery. To think I lost my balance, makes me feel foolish. However, with CSF leaks it’s common to have difficulty balancing and difficulty focusing the eyes which made it hard for me to judge where I was sitting on the sofa – so I hit the ground instead. I’m already making progress from the fall and the collection of fluid is getting smaller.
Even some of the increased symptoms have begun to subside like the nausea.
So, as I lay here I must remain focused on the positives of which there are so many. I’m so grateful for my husband who loves me day in and day out, even when I’m agitated from pain. My family still takes care of me in all ways. When I roll over to see the nose of my lab Stella I can’t help but smile.
A day in the life with Sacral Agenesis – particularly today – is challenging, but I’m so glad for the rest of Sheryl Crowe’s song, “…I get a little bit closer to feeling fine.” Yea, life is a musical and even though my road is winding I know that I’m going to be alright - I’m still on a mission…to be happy each day because I have so much and I don’t mean a medical diagnosis.
Here a are the links to the other posts in this series, listed in the order in which they were published: