This has been a busy month, to say the least! I started the month off by traveling to Austin to speak on a patient panel for a pharmaceutical company. It was a great experience and I got to meet two wonderful women who are also affected by rare kidney disease. I am so thankful to be able to share my story, and also to hear from other patients whose experience and journey is so different from mine. I was offered more opportunities to work with the same company, and I’m looking forward to continuing to share my perspective with them as a patient.

The following week, I was off to San Diego for NephCure’s Patient Summit. Brien came with me, and we had a great time and learned a lot—on top of the perfect weather and gorgeous views. I really appreciated the opportunity to hear from doctors and experts about the progress that is being made in diagnosing and treating rare kidney disease. Not only that, but getting to meet other patients and parents of children who have rare kidney disease was truly humbling and put everything into perspective. I am so thankful for the opportunity to attend, thank you NephCure! I’m already looking forward to next year’s summit in San Antonio.

Yesterday, I met up with my fellow IgAN Foundation ambassador (and dear friend!) for lunch and to go over our goals. It was so nice catching up and putting pen to paper to decide what we want to work on. We already have a few things in the works, but I love brainstorming about the possibilities and knowing we’re part of a larger team that will help turn our ideas into a reality.

Good news for the month: I applied for an advocacy mentorship opportunity through the EveryLife Foundation for Rare Diseases, and I was accepted into the program! I am so excited to take my advocacy to the next level and gain more confidence in sharing my story effectively. My hope is to create change that would benefit all kidney patients, rare disease or not. There are several issues that need to be tackled, things I was never aware of until I experienced them firsthand, and I will do anything I can to make sure that others don’t have to go through the same problems. This mentorship will be truly life-changing and I am so honored to have been selected.

Bad(?) news for the month: There was an issue with my latest blood work. I’m not sure exactly what it means, but it seems my first results were inaccurate and had to be retested. I may have to go back again and have them redone just to ease my own mind, but as far as I can tell, I think my function may have dropped a little. I don’t understand it fully, but I will be discussing with my nephrologist at my next visit. Truthfully, it could just be a physical manifestation of all the stress in my personal life. I have been having terrible pain in my kidneys the past few days, but it seems to be easing up. The fatigue has been especially brutal lately, but I’ve been busy so it only makes sense. At this point I’m not worried, but I will definitely be keeping an eye on everything like I always do.

I think the next couple of months should be fairly calm, thankfully. I have one crazy week in May and then nothing for the entire rest of the month (so far). I’m hoping to be able to get plenty of rest and relaxation in, maybe a weekend trip to the beach, we’ll see what happens. I’m just trying to take everything a day at a time and show gratitude for each moment.