“Veni, vidi, vici” is translated from Latin as “I came, I saw, I conquered.” Julius Caesar first said this after a victorious battle. Having a rare illness is a battle every day. I battle to stay alive. I battle to live a fulfilling life. I battle to get out of bed.
Fourteen years ago, I was medically naïve and blissfully ignorant of the rare disease and chronic illness communities. Having an illness with no cure was the furthest thing from my mind. I was raising three children with plans to return to the educational workspace in a few years. My life was hectic, medically boring, and ordinary.
It’s funny how things change and we have to adapt. I was thrown into the world of medical rareness with a case of hives and a cough. Not very rare or interesting — even my doctor seemed disinterested.
As the months progressed, so did my symptoms. My medical chart was growing. My doctor was becoming more interested, and I had more doctors ending in “-ologist” than I could count. By the time my random, growing group of symptoms was finally given a name, I was on a first-name basis with many of my “-ologists” and had all their private numbers on speed dial.
I realized my disease was medically interesting when medical students and other doctors stopped by during my appointments to talk to me about my symptoms. I still could not comprehend the implications of having a rare, incurable illness. I was happy being naïve and blissfully ignorant.
I was diagnosed with Churg-Strauss syndrome, now known as eosinophilic granulomatosis with polyangiitis (EGPA). Many of my doctors had never seen it before. I found it humorous when they entered the exam room with articles freshly printed from medical websites or even hard-bound medical textbooks.
I have had many blood tests, procedures, and investigations. I have been on both “tried and true” medications and experimental ones. I have refused to give up my dreams despite EGPA, treatment side effects, and never-ending fatigue.
It has been a long 14 years of educating myself and learning about my illness. Unfortunately, I am no longer medically boring and ordinary. I can no longer be blissfully naïve. I can now pronounce different types of specialty doctors, such as rheumatologists, cardiologists, nephrologists, and otolaryngologists. I understand the difference between an X-ray, a CT scan, an MRA, and an MRI. I can explain bronchoscopies, endoscopies, and biopsies in way too much detail.
I have had both highs and lows during this time. My illness has had some wild flares and quiet times. I have never been in remission, and I’m OK with that. I have learned to see the world differently, and I have adjusted my dreams.
I came, I saw, I’m conquering vasculitis (“veni, vidi, vascie“), both mentally and physically. I encourage you to join me on my battles as I share my past, present, and future dreams and adventures with ANCA vasculitis.
Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.