How I’ve been able to fulfill my dreams, even with ANCA vasculitis
With flexibility and creativity, I can still make my childhood dreams happen
A diagnosis of ANCA vasculitis can drastically change our world and our priorities. We may have to adjust many aspects of our life, but do we have to change our hopes and dreams?
After my diagnosis of eosinophilic granulomatosis with polyangiitis (EGPA), a type of ANCA vasculitis, I realized that many aspects of my life would have to change. I’d need more rest and have to make time in my schedule for numerous doctor appointments. I’d have to give up my chosen profession of teaching because my medications, cyclophosphamide and high-dose prednisone, would make me too immune-suppressed to deal with classroom germs and ailments.
I worried about my future and feared I could no longer fulfill my childhood travel dreams.
A storm passes over a rocky beach on the Homer Spit in Alaska. (Photo by Suzanne DePaolis)
I’ve always been a hopeful person, but nothing about living with ANCA vasculitis is easy. It’s hard to control my life because of my medical needs.
After my diagnosis, many of my dreams seemed out of reach. Trekking to an Everest base camp wasn’t possible anymore because of my EGPA lung damage. I had to reconsider traveling to faraway lands and exotic locations for fear of inadequate medical facilities. I began to lose hope of fulfilling my dreams.
With time comes perspective, and 18 years later, I’ve realized that, even with EGPA, I can still dream — and you can, too. How I fulfill my dreams may look different with chronic illness, but those dreams are essential to hope, which gets me through the tough times.
Making it happen
One childhood dream was owning a home on a warm beach and watching the storms pass by. Recently, I fulfilled this dream with a vacation beach home in Alaska. Warm weather is brutal for me to tolerate, so I pivoted and chose a cold, rocky beach where I could watch Pacific storms pass by.
Snow-covered mountains across Kachemak Bay in Homer, Alaska. (Photo by Suzanne DePaolis)
Living part time in another state is medically complicated. I’m in my 19th year of ANCA vasculitis and have never officially achieved remission. Staying in Alaska full time isn’t possible because of my medical schedule of Rituxan (rituximab) every six months and intravenous immunoglobulin infusions every three weeks. Alaska has no ANCA vasculitis experts, so I receive all my medical care in my home state, California. But I can still fly up to Alaska every few months and stay for a few weeks each time.
Did I give up my beach house dream because of my complicated illness and treatment schedule? Nope, I became flexible and creative and held on to hope. My dreams may not look exactly how I envisioned them, but fulfilling them is still possible.
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.
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Comments
Cara
Thank you for sharing your story. I'm a teacher and the fatigue that comes with vasculitis is hard to deal with. Would love to read more about your pivot away from teaching.