Journey to Awareness

My friends, I’m no blogger. I don’t really get social media. I am inclined to think the delivery of email and texts are magic. I am a substitute teacher, leader in children’s ministry and mom to three very active boys. The only significant writing I’ve done are a couple of mediocre plays for our Christmas programs at church. Oh and about six months ago I was diagnosed with a disease called Syringomyelia (SM). I am in pain everyday. I walk without too much assistance but that’s mostly because I’m tenacious. Okay stubborn. I have fallen a few times and I hide my embarrassment behind laughter and really corny jokes.

If you are still reading, it is either because you’re dutifully being a good friend or it’s because you and I may have something in common. Perhaps you or someone you care about has been diagnosed with Syringomyelia, a rather enigmatic disease. Ever heard of it? Exactly. I’ve done research with the help and support of friends and seen several neurologists since I’ve been diagnosed in August 2014. So what is SM and what, pray tell, is a syrinx? Please take a moment to watch the brief CNN report from 2007 on the SM Foundation started by Christopher Burton.

I realize this report is about eight years old, but unfortunately, it has been my experience that not much has really changed. We consulted with several neurologists in Philadelphia who misdiagnosed and minimized symptoms. As my condition continued to decline, we were very relieved to find a neurosurgeon who seemed to have some understanding of the disease. At that point I was willing to undergo surgery or dip myself in mud, whatever might help! However, he strongly recommended against surgery because of the risk involved. Frankly, to me, he seemed afraid to operate on my syrinx.

Next stop was New York. I am currently under the care of a neurosurgeon who seems to have more knowledge and experience. At least we are off to a good start. My syrinx is considered idiopathic because I wasn’t born with it and it isn’t the result of a recent trauma, so he is running specific tests in attempt to reveal the cause of the syrinx. More details on that to come…

The purpose of this blog is to continue to raise awareness of this disease and hopefully provide helpful, current information to others out there suffering from SM. Sitting on your couch. Confused because three different doctors told you three different things. Making tough decisions. Feeling guilty because you can’t do stuff with your kids. Angry because today you can’t even walk to the kitchen. Nauseous because of the pain killers. Embarrassed because you fell and caused a scene.

Perhaps you’ve stumbled upon this blog and your disease is far more advanced than mine. Maybe you think I have no right to complain about falling because you’ve completely lost ability to walk. Maybe you’re reading and thinking that I have no right to write about this because you’ve suffered with this disease for many years and my journey can only be measured in months. Perhaps you are a parent who must watch your child suffer from this disease. My heart is full of compassion for your struggle and admiration for your strength.  It is all of you who I have in mind when I think about raising awareness of this disease. This blog is dedicated to you.

Take heart, my friends.  I know there is HOPE. I will write more about that in later posts.

Journey with me.

7 thoughts on “Journey to Awareness

  1. Well done! The journey of a thousand miles begins with that first step. I feel blessed to have you as part of our family and look forward to the journey beside you, whatever course it takes. I will be there to help hide the falls, laugh at your corny jokes and just be Bro whenever you need.

    I am proud of you taking this first step! Inspires me to begin the next steps on my journey through this life.

    Bro

    Liked by 1 person

  2. Love you katie p! Our God is stronger! You are gonna be an awesome blogger…no holding back 🙂 I agree that you are stubborn 🙂 not willing to give up, but also full of faith and strength. Praying and loving you friend!

    Liked by 1 person

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