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
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
Hello fellow spoonies and spoonie loved ones. I hope you all had a good weekend. Did anyone else over do it, over-indulge on Super Bowl food, run yourself down trying to take care of things for game day parties or appearance at a party? Ok, we can all raise our hands together.... ME TOO! I … Continue reading Rest and Recovery
Hello friends! I hope this finds you all doing well. I've spent a lot of time thinking about my recovery time from this surgery; going over every detail that's not going well, every possible moment in which I messed up the repair... It's not going well and all I can think about is my swimming. … Continue reading To Swim or Not To Swim? That is not a question!
Hello friends... I hope you're all doing well today. I'm sorry I've been absent the last couple of months. Things have been... well... out of control around here. Just a bombardment of appointments, therapies, specialists, home visits, home OT; the list goes on and on! I just wanted to say thank you to every one … Continue reading Stress… Stress… and More Stress!
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…
Anyone who knows me well, knows I really quite despise labels. I'm not their bio-mom, adoptive mother, foster mom... I'm a MOM. I have a shirt from one of my favorite foster family non-profits that says: Bio, Adoptive, Foster all with a line through them and then MOM in big letters at the bottom. I … Continue reading All of The Labels and Then Some
Remember when I said my RA was under 'good control' and I was trying to navigate a new me with limitations? That only lasted a couple of months before they lumped on another diagnosis. This one I at least saw coming. Well, I kind of saw it stealthily peeking out from the corner of that … Continue reading Then There Were Two And Also Five…