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

Rest and Recovery

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

Creeping Along on my Journey

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

To Swim or Not To Swim? That is not a question!

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!

Stress… Stress… and More Stress!

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!

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…

When The Darkness Creeps In…

Sometimes when I allow myself to stop and really think about how young I am in conjunction with my list of illnesses I wonder about things like an altered/shorter life span, my quality of life now compared to 8 years ago, I wonder if the pain will ever completely leave my bones. I think of … Continue reading When The Darkness Creeps In…

Inspiration Along My Path…

A HUGE thanks to Des for her guest posts; I hope you all enjoyed them as much as I did. I hope to have her back and writing for us all again soon! I'm finally out of the fog from surgery and can type a little... one-handed and slow, but typing. Thank you for all … Continue reading Inspiration Along My Path…