Rare Disease Day 2021

Today is an important day for a lot of chronically ill individuals, especially those with rare diseases. Rare Disease Day used to only be on February 29th but now it's celebrated annually on the last day of February. I took time to reflect on the years that have culminated in each diagnosis, each adding another … Continue reading Rare Disease Day 2021

Parenting with Chronic Illness

I had someone ask me the other day if having so many kids was 'smart' since I am a mom with chronic illness. Honestly, I wasn't totally sure what to say and I'm sure there are things that would have been full of kindness and grace, but I found myself saying,"Well, if you found yourself … Continue reading Parenting with Chronic Illness

POTS, Hydration & PICC/CVC Lines

My CVC almost all healed up about 10 days after placement. (BARD PowerLine CVC) At my most recent neurology appointment my doctor and I had been discussing my symptoms and this 'flare' of sorts I've been in since having surgery in October. It seems as if the surgery just really aggravated all of my conditions, … Continue reading POTS, Hydration & PICC/CVC Lines