June was terrible. I had high hopes, and I think that was my first mistake. Since I had no big plans, I was looking forward to a calm and relaxing month. I unfortunately ended up getting the exact opposite. It feels like everything that could have gone wrong, did just that. Between car troubles, work drama, and a loss in my family, I could not be any more relieved that June is finally over.

I’m writing this on Independence Day, my first non-flare, non-exhausting, non-getting-accustomed-to-a-new-medicine day off in weeks. For the sake of my own sanity, this post will be short and sweet.

I started off the month by getting bullied relentlessly on TikTok, so that was great. With virality come consequences, including but not limited to rude comments and unsolicited medical advice. I should have known that posting about my health online would get attention from uninformed do-gooders and scammy herbalists, but I wasn’t expected to be called out about my weight by random people. I realize that a lot of people don’t understand that there are different causes for kidney disease and not all of them are because someone “did something wrong” or “caused their own illness,” but what bothers me is the willful ignorance and refusal to accept new information when it’s presented. I’ll need to work on not getting upset when people blame me or my weight for causing my disease, or when people assume that I must eat terrible food because of how I look.

Health-wise, things took a tiny bit of a turn. My kidney function remains unchanged, as far as I know, but I did pick up a new reaction to my medication. After being on lisinopril for many months I began having swelling in my lips. It wasn’t painful, just bothersome and looked bad, so I ignored it for a while. I finally brought it up to my nephrologist and he immediately recognized it as angioedema, a reaction to lisinopril. He has switched me over to valsartan, and it took me a few days to adjust but I seem to be doing better. For the first few days, valsartan gave me all the side effects possible. The only side effect that’s lingering is the headaches. I take my meds at night to help with the dizziness, so overall it’s not too bad. I’ve been struggling a bit to stay hydrated (it’s incredibly hot here) but I’m mostly fine.

Next week I’m off to Capitol Hill for another advocacy trip in partnership with NephCure, and I’m so looking forward to that. Then on the 20th I’ll be back in DC, this time with Brien, for SPARK. I’m excited to see everyone from the IgAN Foundation again and be around people who “get it.”

Look for photos in my July update!