You just finished a long day at work and are pretty exhausted. You're looking forward to just getting home and resting but you decide to stop for coffee on your walk home. You know that all the local coffee shops have drive thru service only but you figure it shouldn't be an issue, you can … Continue reading Let’s talk about straws!
Tag: SMA syndrome
Moving into the light
May is Ehlers-Danlos Syndrome awareness month. I wrote this in hopes of giving a better understanding of how *I* have experienced EDS throughout my life; keeping in mind that EDS is a spectrum meaning some people barely have any symptoms and can live normally and some have more severe symptoms. This is not a full … Continue reading Moving into the light
One year ago today
One year ago today, I woke up early in the morning. As I slowly opened my eyes to see the world around me, I started to remember where I was. I gently rolled over on my blue plastic mattress, opening my eyes to the sight of my hospital room, the same room I had previously … Continue reading One year ago today
The summer of self-discovery
My routine over the last few years has stayed fairly consistent no matter what month of the year. It mainly consisted of running from appointment to appointment, test to test, spending more time with my doctors and other medical professional than my friends. Not only did I spend much of my time in the same … Continue reading The summer of self-discovery
How social media helps (and hurts)
Three summers ago, I was laying in a hospital bed in the fourth floor of our local hospital. I slowly try and pull myself up in bed, the new incision in my stomach pulling and causing pain. After I sat up, I hesitantly walked over to the mirror by my bed in a hunched over … Continue reading How social media helps (and hurts)
2016.
This past year was probably the toughest year of my life. With my health posing lots of challenges, I had a lot of hurdles to overcome and mountains to climb. Yet, because of all of this, I learned so many beautiful lessons I would like to share with all of you. I realized how much … Continue reading 2016.
On Turning 20 & Decision Making
I've had this sense of impending doom overhead for the last little bit. It first started out with my birthday last week. Last years birthday wasn't so great. I had just been discharged from the most mentally, physically, and spiritually draining hospital stay. Needless to say, I didn't have the energy nor necessarily the desire … Continue reading On Turning 20 & Decision Making
Gastroparesis: The Basics
Picture the worst stomach flu you've ever had. Imagine the nausea, how awful you felt, how you couldn't keep any food down. Now, imagine that feeling never ever went way. You thought you just had a flu but you never got better. That's what it's like living with gastroparesis. Out of the handful of diagnoses … Continue reading Gastroparesis: The Basics
The Benefit
Thursday, the day of the benefit, started out as a not-so-good day. On Wednesday, I had an appointment at the hospital which always take a long time and wipe me out. Not to mention, my hips were dislocating left, right, and centre so I was pretty sore after that excursion. When I woke up the … Continue reading The Benefit
A Letter to my Village
I'd never understood the old adage "it takes a village". I've always been a pretty independent person; happy to be in the company of others but equally happy to spend time on my own. Lately, I have come to have a much greater understanding of what that saying means. As most of you know, nearly … Continue reading A Letter to my Village