It has been several months since my last update. I took a step back from socials and blogging to focus on my “real” life. Tomorrow is Rare Disease Day, so it feels like the right time to give an update.

I’ve been feeling a bit sick and fatigued lately, but I have an appointment with a rheumatologist next Monday, so hopefully she will be able to shed some light on what’s going on, since I suspect it’s not related to my kidney health. I do have some inflammatory markers in my blood work that I’m keeping an eye on, but they could mean anything. For now, it just means a lot of soreness in my legs. I could hardly stand the pain earlier, but I pushed through with a little Tylenol and extra hydration. Thankfully, my kidney health has continued to improve. I’m still only taking a blood pressure drug, one little pill every evening, and it’s working well for me. I’m one of the lucky ones.

I’ve been staying busy volunteering, with lots of exciting things coming. Next month I’ll be participating in a webinar with my nephrologist, hosted by the American Kidney Fund for their annual Kidney Action Week. I will link the recording when it becomes available. I’m also working on publishing part of my IgAN journey in an anthology of rare disease stories, set to be released this fall. More to come on that.

As far as my personal life, everything is going really well. Part of the reason I took a step back from social media was to give myself extra time to work on a few personal projects. My IgAN diagnosis, weirdly, has been a huge motivator for me. I decided that I’m going to be more involved in advocacy. Once I started seeing how much change was possible, I became really inspired and wanted to dedicate more and more of my time to supporting rare disease and kidney health causes. It has been a few months since I returned to school, and I will be finishing up my Bachelor’s degree in History and Political Science this summer. I’ll be studying for the LSAT right after graduation, and I hope to be accepted to law school in 2025. It’ll be challenging, as a non-traditional student, and especially managing my health on top of it all, but I can’t imagine a series of events that would cause me to give up on my goal of being a full-time patient advocate, whatever that ends up looking like.

It’s not so much that I dislike my current job (because I absolutely don’t, in fact I could work at my job forever, under different circumstances). It’s more so that I discovered a new passion for legislative advocacy. I feel that I’ve found my calling in advocating for policy change, and I have IgAN to thank for it. This is a really big deal for me, because I was content and had no plans to go back to school or attempt to pivot from my career path. I had been working as a hairstylist for nearly a decade, a job I loved and excelled at, until illness forced me away from the industry. Then, after a little fumbling, I found a great role at a tech company, and I’ve been doing that for a little over 4 years. It wasn’t until my diagnosis and staring death in the face that I realized how truly unfulfilled I felt. And again, it’s not that my current job is unfulfilling, it’s just that my real passions, the things my soul aches for, lie elsewhere. I’ve reached a point where it’s better for me to put myself through the discomfort of starting over rather than pretend I’m okay with being “okay” for the rest of my life.

In the meantime, I’m almost done getting my state certification to be a Community Health Worker. This means I’ll be able to work in a healthcare setting and provide basic health education. I’m hoping this will open up new opportunities for me to share information about CKD and RKD. I may use this as a stepping stone to my new career, if it feels right and the right opportunity comes along. It’ll be a good credential to have in my tool belt either way.

Oh, and I’m turning 31 in 3 weeks. Cheers to birthdays, school, and good health.