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I've been bald a long time. My kids have famously been quoted as saying "Dad, you don't have any hair, but we still love you." It never bothered me and was more of a defining characteristic. When I became ill and lost normal temperature regulation, I went from being the guy who wears shorts to Christmas to the guy who wears long underwear in the desert.

When I found myself freezing in the middle of summer, I started wearing skull caps as part of my daily uniform to be able to function. I fell in love with one in particular that has become my signature look and - to me - is symbolic of the day it all changed.

Beyond being a patient living with a rare disease, I'm awestruck and humbled by my incredibly strong and beautiful bride, and we have 4 amazing, brilliant, and resilient kiddos and 2 doggos - I'm a husband and a dad. I'm a marketer. I'm a cook. I'm a friend. I'm a brother. I'm a pain warrior.  I'm my own healthcare advocate.

The truth is that after college, I was primarily (almost exclusively) focused on my "career trajectory" and climbing ever higher. I liken myself to a thoroughbred horse that was set free to work - and I loved it - but didn't know how to stop, reprioritize, or recalibrate. Even as I got sick,  I was unwilling to believe that something was really wrong. So, I continued working and  trying to push through it. 

Eventually the illness won and I was forced to stop work at the end of January of 2022. I've been fortunate to be given the gift of time (in the form of Long Term Disability) while I've needed to focus on being a professional patient. The past several months have included visits to Indianapolis, Cleveland Clinic and The Mayo Clinic - not to mention nearly weekly visits into the city. A typical week includes 3-8 healthcare related appointments in addition to my at home therapy activities.