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
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
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
Do you ever feel like the days are just dragging by? As if the time passing was the slow tick of the second hand on an analog clock low on batteries? Or you yourself are low on power so the time isn't really the issue so much as you're running low on power? It can … Continue reading Creeping Along on my Journey
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!
Photo by Pixabay on Pexels.com I've written about my daughter many times before, I've written about my best friend, and well since this is her blog you all know her too. I've even written about myself and how I try to be the best support system for them that I can be. What I haven't … Continue reading I just cannot understand
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!
I just want to preface this post by saying that I know it will be hard for a lot of people to listen to. Not in the "sad, difficult, bring up past hurts" way, but in the "I'm not like that, this is for someone else" way. So, let me start by saying, no, it's … Continue reading Taking Care
"Hey, so I was wondering, since you are so good at it, we would really appreciate your help with something. Can you?" No. "Your the only one we can trust with this, we have no one else, if you don't it won't happen..." No. "Think about the people who will be negitively affected by this, … Continue reading Saying No, Healthy Boundaries