Courage

So I haven't been feeling very well over the last few days. My neurologist is pretty sure I had a migrane. I am not feeling very excited about adding another symptom to my list without knowing what is causing my body to be so out of sync. Right now my neuro is leaning towards a mitochondrial problem, but it is a difficult diagnosis to make. Tons of testing is required, but he hasn't found anyone in Utah who can do it. We are now waiting for the Mayo Clinic to call him back.

A plus side to my being down was that I came across a quote while I was watching a movie to pass the time. "Courage is not the absence of fear but rather the judgement that something else is more important than fear. The brave may not live forever but the cautious do not live at all." The quote struck a cord with me as I thought of how I can't let my mystery disorder rule my life. I need to be brave and fight through whatever is going on with my body. I am finding this hard to do when the pain and fatigue get unbearable. But I am not going to let it rule me or my emotions. I don't want to live my life in fear of whatever this happens to be. Courage will be my companion through this trial.

Loneliness of an Undiagnosed Disorder

Living with an undiagnosed disorder is not something that was ever in my plans. And yes, I called it a disorder. Disease sounds too harsh for me to say out loud. I am still hoping this is a passing visitor and not a permanent resident. I have tried my hardest to stay upbeat and to make the most out of my situation. But I have discovered that being undiagnosed is often a lonely road. 

First of all, people don't always understand what it is like to have a condition where you don't know why this is happening to your body. Usually when I tell someone I have an undiagnosed condition they react by saying that it must not be that bad if the doctors haven't found anything yet. What they don't understand is how I went from being partially paralyzed with suspected Guillian Barre Syndrome to having a body that doesn't react well to physical activity. They don't understand that even though I have overcome the paralysis, that I still struggle on a daily basis. They don't understand the pain, fatigue and upset stomach that occur each day for me. They don't understand that I have days were all I can do is curl up in a ball and pray for the pain and fatigue to pass. 

The second reason that having an undiagnosed disorder is lonely is that there is no awareness among the general public. There are no runs, no fundraisers, no telethons (do they still have these?), no anythings to let people know that there are legitimate diseases that remain undiagnosed. I guess what it boils down to is that people just don't know. And I'm not sure how to help spread the word that it is just as tough if not more tough to live with a undiagnosed disorder than it is to live with a diagnosable disorder. 

Life has a way of surprising us. Sometimes these surprises are the things of fairy tales. Sometimes these surprises are still the the things of fairy tales, but the parts of the fairy tales that we deem tragic or unfair. When we talk of Cinderella's happily ever after we tend to not think about all the turmoil she had to go through to get her fairy tale ending. And maybe her tale was mixed with joy and sorrow before the tale declared "... and she lived happily ever after." Right now I am finding that I am living an unlikely fairy tale. I am the fair maiden of my own fairy tale in which I have already had several adventures in life. I have gone to college twice -- once to get my bachelors in communication and then to get my masters in professional communication. While there, I met amazing friends, learned to have fun, work hard and to love life. Along the way I found love, lost it, learned how to cry and then how to mend a broken heart. I have had my share of broken bones, surgeries and assorted maladies. Sometimes life is just plain hard and it is hard to see the magic in our tales, but I believe that if you look for it you will find it.

So I welcome you to my blog. This is a place for me to record my tale -- all the joy, tears, success, failures that make up my unlikely fairy tale. My name is Julia and this is my tale.