10 Year Vasculitis Anniversary

Winthrop '07
10 years ago today I sat in the metal bleachers at the Saluda Trail Middle School track with my younger brother as we watched our sister compete for her middle school. As we sat and watched races between her events my flip phone rang. I stared at the tiny view screen. I was baffled to see my doctor's telephone number. I glanced down at my watch. It was nearly 6:30pm, why was my doctor calling from his office this late?

I had been sick for nearly 8 months. Deathly sick for about 4 of those months. I had been on more drugs than I even knew existed. Nothing worked. I'd get a few days of relief, but my nasty sinus infection, ear infections, bloody noses, joint aches, and extreme fatigue would always come back. Sinus surgery in March didn't alleviate the symptoms as the doctors had hoped. Test after test would yield no answers. I felt like I was dying but no one would believe me or could figure out the problem. Just a year earlier I had been one of the best middle distance runners in the Big South Conference while competing for Winthrop University. Now I couldn't run a block without being in extreme agony. My life had completely fallen apart in those 8 months. The sport I had dedicated half my life to at 21 years old had been ripped away from me, my girlfriend of 2 years had dumped me the night before I had sinus surgery and also took our dog. I had become a recluse living in a house with 4 other teammates. Tension was high with them. We couldn't go a few days without some fight erupting, normally initiated by me. To say I was living a nightmare was an understatement. The rug of life had been yanked out from under me and I was falling uncontrollably backwards searching for anything I could grab to slow my fall. I was unaware that the phone call I was about to answer would send me down a path that was darker than I could imagine.

As I flipped open my phone and answered, "Hey Doc" I shortly realized it wasn't just one of my doctors, but 2 of them. This didn't sound good. After my follow up post surgery with my ENT said he suspected something was wrong with my immune system, but I didn't know what that meant. T
20 lbs of water weight
hey asked if I was sitting down. I indeed was, if memory serves me they were in the middle of about a million 200 meter heats on the track, it would be a while before my sister ran again. They dropped the news. A week earlier after my follow up for sinus surgery, the battery of tests run by my ENT confirmed that I had what was known as Wegener's Granulomatosis (which has since been renamed Granulomatosis with Polyangiitis, since it is apparently socially unacceptable to have a disease named after a Nazi doctor). They explained I'd have to seek the care of a rheumatologist in Charleston, SC at the Medical University of South Carolina because no one in our area had enough experience dealing with my disease. Not only that but that the disease seemed to be moving quickly and I needed help.

As I got home and started googling (keep in mind this is 2008 google, so far less information was available) I slowly started reading things like 50% remission rates, and over
Winning my 2nd SoCon title on 4/23/10
90% fatality rate at 1 year after diagnosis until the 1990's. It all scared me, but surprisingly I was somehow relieved. I was relieved that indeed I had been slowly dying and I wasn't wrong. But after briefly skimming the the prognosis I shut my laptop and decided I wasn't going to become one of those statistics. I could beat this thing.

A lot of the battles over the last 10 years I've chronicled here on this blog and in my book, Going the Distance, so I won't bore you with the details. Hell this site can't probably handle all the words it would take to recount all the ups and downs, twists and turns of the last 10 years. Sitting in a college class a few months later during my senior year, we were asked to make plans for 5, 10, 25 years.
I don't remember what I wrote down all these years later, but I can tell you it wasn't even close to accurate. In the last 10 years I've gone places I never imaged, realized childhood dreams, lost dear friends, found comfort in living in my own hell, learned to love again and somehow through all of this figured out how to be happy.

A Dream Come True: 2016 Olympic Trials
As I sit here 10 years later I can finally say I'm happy more than I'm mad, sad, frustrated, depressed, anxious, or nervous. That's not something I can remember happening since I was a kid. It's been a lot of work, but it's only been possible because of my amazing friends, my girlfriend, and my unbreakable family. Without them I surely would've given up long before now and wouldn't have a story of triumph to share with you. I still have my demons. I always will. But those demons are just a whisper in my ear that I can ignore most days. 10 years has seemed liked a long time, but it's also gone by like the blink of an eye. Honestly at times I can't believe I'm even still here, but I sure am glad I am and I'll continue to fight for my dreams and the dreams of those who don't have a voice.

Till next time,
All Hope is Gone

Going the Distance is available on Amazon.com