Living with EGPA disease is one big game of whack-a-mole

Sarah Jones smiles for the camera. (Photos courtesy of Sarah Jones)

This is Sarah Jones’ story:

I thought on the day of my EGPA diagnosis — fully, eosinophilic granulomatosis with polyangiitis — that I was finally going to get on top of it and move on. Nothing could be further from the truth. While I am glad not to have known it would take a few years for my treatment plan to stabilize, I’ve been continually surprised by the unpredictability of this disease. It is one big game of whack-a-mole every day (poor moles). It has stretched me to build new skills in adaptability.

Jones and her wife Pam Squires just before Jones went in for a Rituxan infusion.

Learning to live with vasculitis has meant many layers of grief and thousands of tears. Among hundreds of other things, I’ve grieved the loss of my career; my ability to do hours of home improvement projects with my wife; and being able to track multiple conversations without getting completely exhausted. But the grief has been necessary — allowing space for new things.

Getting the right care team was tough. We fired (or ghosted) several doctors, and I’m glad. I now have a doctor who believes me, not just the labs or tests. My fantastic wife Pam and I have learned to better engage her in my appointments and share my symptoms more effectively. I’ve refused to be OK with not feeling well, and push for treatments, even when the medical community pushes back.

I ask myself if I’m OK with this being how life is. If the answer is no, I push for treatments. If there are not any, that is OK, at least I pushed. All of this has been a learning process — and has built a new kind of resiliency for me and my relationship.

Jones and Squires out to dinner in Tucson with Jones’ mother, Carol, and brother, Bruce.

After 28 years, Pam and I are creating a new relationship. Our roles have changed, and disability and the cost of EGPA have upended finances in unexpected and challenging ways. As a couple, we don’t do the things we used to do. I’m grateful for our strong communication. It has been the foundation to finding our way, because there is no guidebook. I struggle knowing the strain and worry this disease creates in the person I love most. The serenity prayer has become our friend.

All that said, I find I’m grateful for the opportunity to experience a deeper and richer presence with my wife than I would have — I would’ve been too busy working. I’m learning to be in my skin and body, even when it’s not pleasant. The best byproduct: slowing down and being real. In a way, I’m living a better life than I did when I was going 150 mph.

In recognition of Vasculitis Awareness Month in May, the ANCA Vasculitis Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by vasculitis, written in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #ANCASpotlight, or read the full series.