{“Going through things you never thought you’d go through will only take you places you never thought you’d get to”}

Two weeks ago I woke up in the emergency room. I spent the day there, being closely monitored while waiting for a bed. Later that night, after being settled into my room, it was suddenly flooded with physicians and clinicians. As they each chose a spot to sit or stand around my bed, I became...

{“You can’t go back and change the beginning, but you can start where you are and change the ending”}

Let me back track for a moment... In late January I was finally able to meet the Genetics & Genomic team, this is huge as I had been on the waitlist for thirteen months. There has been a lot of hesitation on my part, trying to figure out if sharing the outcomes from that appointment...

{“Fear will show you the way. Walk steadily towards it, for otherwise you will always be running”}

As I am approaching the twelve week milestone in recovery, I took a while to reflect on the post-op journey thus far and man, it has been an absolute whirlwind. It's hard to put it into one word or phrase... I'm stuck in a weird middle ground between defeat and peace. When I say this surgery...

{“Raise your words, not your voice. It is rain that grows flowers, not thunder”}

When fear made me quiet, intuition gave me the words and my inner fire gave me the courage to speak them. When my words failed to reach, I started screaming out in desperation to no avail. My body is failing me, but I won't let my words fall short. This mess could have been avoided, but...

{“If you are healing & breaking all at once, do not fear — this is growth”}

We all get overwhelmed from time to time, but man oh man...that little blogging hiatus was good for me. I know, I know... us MALS patients are a tight-knit group and the lack of update is tough. There's not many of us, and we're all learning from one another as we each take our own...

{“I’m going to make everything around me beautiful, that will be my life”}

Being part of a community, such as the chronic illness or rare disease communities (or both!) is such a lifesaver. It has given me a place to share my story, my tears, my anxieties, my hopes and empower me all at the same time. On the other hand, I tend to get stuck in a rut of...

{“I am thankful for my struggle; without it, I wouldn’t have stumbled across my strength”}

Holidays can be tough for everyone, not only mentally and physically draining, but emotionally as well. When you throw in chronic illness, things tend to get complicated. As we launch into this holiday season, I've been thinking of all my tubie friends, (and non-tubie friends!) but, when holiday gatherings tend to revolve around food — it is...

{“Not all storms come to disrupt your life, some come to clear your path”}

For anyone who has been following this journey via instagram, (where I post updates more frequently) you know it's been an eventful week. I've gotten a lot of messages, questions and support (mostly questions!) since sharing this week's hospital trip. So let's get to it… After spending this past year attempting to gain nutrition through...

{“You cannot change what you refuse to confront”}

I'm sure by now you've heard of the stress response referred to as the fight or flight response. I'd actually be quite surprised if you haven't! Everyone experiences fight or flight at some point in their lives, it's the body's natural reaction to overwhelming stress. However, my body's reaction to that cascade of stress hormones...