After fourteen years with too numerous to count misdiagnoses, this is my daily journey living with an unknown disease that has made me fully physically dependent, living by the help from my family, friends, and beloved service dog. It is how I have chosen to define myself to remain whole in spite of it.

Sharing my experiences through a blog has been offered as a suggestion to me several times throughout the years, yet it was always one that I sprinted away from. As a naturally reserved person, the idea of opening myself up in such a way has taken a long time for me to embrace. Even now as I write this, I am at a loss for what to say.

This blog isn't an attempt to tell someone how to live their life better, nor sell you on an idea for the way I have learned to live mine. I believe everyone's circumstances are different, and there is no one right prescription for anyone or anything. All I know is what works for me or the best way I could cope with the given circumstances.

That said, lacking opinions has never been one of my problems. I have, however, become extremely—perhaps overly—sensitive to the “judge without facts” world we have become. Not just on social media, with each post, comment and tweet reducing the substance to fewer and fewer characters; this attitude is pervasive in all spheres of society, including the medical world.  Too many times, I have been summed up and sentenced by doctors who have talked with me for as little as 15 minutes. Even those doctors who have spent over an hour with me have felt the need to fit me and my condition into a neat little box by the end of the visit, fully informed or not. While this might seem a particularly long visit with a doctor, it is not a lot when you have a medical case that weighs more than five pounds in print. (Or at least, it did a few years ago in year 11)

During an age in which everyone and everything is measured and data accumulated, I don't fit on any chart, and I have symptoms and abnormal systems that are so intermingled no one can discern which is a secondary condition, which is an actual problem, and what on earth is causing the havoc in my body. For several years early on, more than 15 world-class and some world-famous doctors concluded that, based on a lack of medical evidence, I was simply “psychosomatic”; i.e. crazy. When new doctors have begun to find, diagnose, and treat missed diseases that were then life threatening (and now considered to only be “off shoot” diseases), it took me months of counseling to process that all the other doctors were wrong. I should note that it did NOT take my family or friends any period of time; they were simply angry over the injustice of having it missed, which led to my suffering and worsening condition.

Thus, I have consciously made a decision to choose every day to be someone who counts, to define myself by what I do know, and to make myself someone that is of such substance it would be very difficult to ever discount me. Naturally, however, there is a bit of lunacy in me, as there is in all of us. Well, at least all of the Jimmy Buffett Parrot Heads. (Full disclosure: “Fruitcakes” is one of my all-time favorite songs).

This, then, is my journal, my musings, and some tiny bits of knowledge I have gleaned along the way.

Welcome.

 

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