Allow Me to Introduce My Story

Last year when my Dr.'s office called me to say my test results indicated I had Vasculitis, I had no idea what a long road I was headed on. If I did, I would have started a decent journal back then.

It's been 13 months, and I have yet to find a Dr. that will give me the proper diagnosis. This problem is common in patients with Wegener's Granulomatosis. To make things even more confusing, somewhere in the last 13 months, the medical community has changed the name to Granulomatosis with Polyangitis.... or something like that. I'll get it right one day.

It's important that I document my journey because I have a goal. I have a mission. Like many patients going through this, we are shocked to find the lack of knowledge and/or interest in research. We are shocked to learn of so many unnecessary deaths of innocent people. I'm appalled to find that the most common time for a proper diagnosis and start of treatment is when it's almost too late. When life is hanging in the balance. When major surgery for organ transplants are required to save a life. THIS IS NOT OKAY! My goal is to encourage patients to take control of their situations, to take required action, to do whatever they can to save their lives NOW, not tomorrow.

Six years ago, before I became ill, I walked into a Krav Maga training center. I was determined to gain strength, and skills that would save my life from an attacker. What I learned is invaluable, and although I have been unable to continue my training due to illness, I carry the fight skills instilled in me through hundreds of hours of intense training. I learned to stand strong against an attacker. I learned to face them, ground my stance, and guard my body. I learned to pay close attention to each, teeny tiny, movement of my attacker so that I can make my move FIRST. I always knew this fight training would save my life. Today, it is. I will stand against this nasty disease festering within my body. I will face it, I will guard myself from it. I have taken control from my local doctors, and I'm in the process of finding a specialist that will hear me, listen, and respond to my needs. I will not sit in the corner and wait for this to become agressive.

Follow my journey as I learn how to recognize active Wegener's Granulomatosis before it's too late.