Every I took step out of the venue where the reception was held after the 2026 Autoimmune Association Legislative fly in day felt as if I was breaking the bones in my feet. The lidocaine had long worn off. The hours of standing with my weight pressing down on my feet had taken its toll. 

The pain came after I’d taken thousands of steps through the Senate office buildings and the House buildings visiting legislators. I had reapplied lidocaine, added more pads to my shoes, took a pain pill and continued on. I had surrounded myself with guardian angels to keep me pushing forward. I was wearing the shirt my father wore at my wedding with his cuff links, my mother’s earring, my engagement ring from my husband and bracelets from my friends Diane and Karen. 

I was proud of me. I had advocated for people suffering from autoimmune diseases, just like myself. I had shed light on IGG4-RD, a condition most people have never heard of. I had explained why health care reform was necessary. I had explained why we need co-pay assistance, why we need “The Step Act” and why we need more funding for autoimmune research.

I had also spent the day with other people who had struggled to find a diagnosis, who were facing a mountain of medical bills, who were pleading with their jobs for accommodations, and who at times contemplated ending at all rather than continuing their suffering.  We told war stories, talked about coping mechanisms, and we shared our hopes for medical advancements in the future. And, as one of the participants said, we also reveled at our disease party. We were finally able to find joy in something that had brought us so much pain.

It’s one of the best ways I’ve marked autoimmune disease awareness month so far. So the pain that has left me in bed at 8 pm is bitter sweet. 

#autoimmunediseaseawarenessmonth #igg4 #washingtondc #chronicillness #chronicpain #autoimmuneassociation 

(P.s. before I came to dc I got the governor of New Jersey to issue a proclamation acknowledging autoimmune disease awareness month)