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

Research, Research, Research…

Friends, how many of you take to the internet to research your diagnosis? I'm not talking about WebMd (which always seems to tell you it's possibly cancer when you really have a bladder infection, HA) but legitimate research, published studies, specialist's books or articles etc.? I have to admit that I wasn't as dedicated to … Continue reading Research, Research, Research…

Surgery

Hello Friends, I had shoulder surgery yesterday and am working on recovering. I hope to be back to writing and sharing with you all soon. In my absence a dear friend of mine and parent of a child with chronic illness is going to share some of her thoughts. Please welcome her to our community … Continue reading Surgery

OH! I Know Someone…

We've all been somewhere, telling a story and that one person says,"Oh, I know someone who_________!" Am I right? Most of the time I just smile politely and think snarky things to myself when someone tells me they know someone with one of my conditions and how barley oat grass cured them or a gluten … Continue reading OH! I Know Someone…

The Sleeping Beast Awakens…

It had been months of agonizing stress waiting for court process after process to finally adopt our children. Nearly 18 months after parental rights had been severed in fact. During those months of stress and worry I was in a constant flare. My body was the remains of a desert rave after the hundreds of … Continue reading The Sleeping Beast Awakens…