Hi everyone! I know its been a while since my last post and so I figured I better get something up. That’s if any of you are still reading this blog! Today is really just an update on what has been going on. In Sept things were busy with a couple of speaking engagements and a week-long trip to Ottawa involving advocacy work. While in Ottawa for that work an opportunity arose to speak Continue Reading →

Hi everyone!I know it been a while since my last post but I’ve needed a bit of a break. With family and multiple advocacy commitments it hasn’t left a lot of time for writing. Yet its such a vital piece in helping me to express myself with all that rare disease has thrown my way! Some days it just feels like such a never-ending battle and I’m not going to lie its hard. I wish Continue Reading →

Finding Hope Through A Trial

  This piece has been entered in the Patients Have Power Writing Contest run by Clara Health which is designed to raise awareness about clinical trials. I am passionate about this cause and hope it will raise the much needed awareness. Up until a few days ago I was still trying to figure out just how to approach this piece. Although I have yet to take part in a clinical trial, I’ve spent the last Continue Reading →

Back To Grass Roots

Today has just been one of those really tough days, one of those emotional roller coaster days. It’s been a high pain day and the last thing I wanted to do was get out of bed. Actually let me go back to closer to 2am when the shooting burning pain intensified. Then again around 3am it decided to get a little angrier! If that wasn’t enough around 4am it decided to ramp things up even Continue Reading →

Making Smart Choices!

While the last post is fresh in my mind I wanted to write part two. Before I get started though I just wanted to say everything in this post is of my own opinion. I’m excited for today’s post because the whole area of good tasting food is important to me! I like food! One of the hardest parts of making all of these changes to me was not knowing what the taste and texture Continue Reading →