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.

Introducing Watson & My Elephant

My entries will not be in chronological order— this is not a book. And personally, I relish in a bit of randomness, as that is so much my fate in lack of control in my daily world. However, this is the beginning of a journey, and it’s only fair to introduce the main characters.

Since you’ve already met me, you’ve met my Camelot, and you’ll come to know my sisters and Mom, as their stories interweave with mine. There are, however, two others that are relevant. In every great mystery, you have to know the victim. Well, I refuse to be it, so it’s my body —my elephant— I will introduce next. 

When asked by the medical profession what system’s have  been affected, off the top of my head, they include (in no particular order):

  • My visual/eye-muscular system
  • My pulmonary system
  • My cardiac system
  • My stomach/gastric system
  • My bladder
  • My blood volume/ vascular system
  • My autonomic system/temperature 
  • My involuntary muscular system –including my back muscles
  • My ability to recover – from damaged veins/scar tissue to conquering fatigue
  • My ability to grow/repair muscle

I think that’s all of them… I may have missed one. If you noticed, my neurological system is not included, because it is only proven to have been terribly affected in the very beginning—you know, like, paralysis levels. Then the tests results returned to normal within a month, yet my physical recovery has been nowhere close. So, that system is contested. As to whether or not I have a neurological or muscular problem, is the chicken and the egg dilemma I have been discoursing with doctors for the past 14 years… So, it’s best to leave that one to the side. That, and I have doctors still wondering if there are further systems not fully working. In short, it’s complicated.

How these systems malfunctioning actually apply are, well, the interesting part. That’s truly the mystery, because while it may seem logical, and in pieces can fit for a vast multitude of different diseases, they make little sense when put together. Hence, it makes it annoying. More like one of those 30,000-piece-puzzles that eat your dinning room table, and all you can think as you stare at the thousand of pieces is how much you “hate” the person who gave it to you. Clearly, you can tell I’m not a fan of puzzles. I can do them—my sisters love them—but they’re not my preferred pastime. 

I am blessed to have a soundboard navigate this journey the last few years. Well, to be clear, aside from myself, no one knows my history better then my mom. What I forget, most of the time, she always remembers.  Yet, searching for hope and clues in the gutter is not easy to do over the years. And, as every mystery should have code names, I designated them. One of my best friends is also a nurse—it’s how we met— and over time, with her encouragement, she has helped me navigate way too many medical journals, clues, theories and presentations to doctors. She is my Watson. (Yes, that makes my codename Sherlock.) Watson is my aide in discovering this mystery, and without her help, I would be even more of a blabbering diddy than I already am.

Thus, introduced, you are all set on this journey.  I hope you grab a beer or some wine, because it’s quite a windy path. I would, except my liver doesn’t like alcohol anymore; chemo killed its tolerance. Ah! Another system affected!

Knowing How to Drop a Leash

Meet Camelot