Hello, It has been quite some time since I have said that phrase on this blog. 168 days, in fact. Life is ironic in those ways, it seems when we are going through a challenging period where we would seek support, we often turn away and cocoon ourselves. A coping mechanism. Shielding ourselves from the…
The concept of surgery is so complicated when you think of it in terms of the patient-body relationship. You sign consent forms- consenting to whatever measures are needed to keep your body as healthy and stable as possible- and go into it knowing you will not be aware at the time of what is happening…
Being high risk amidst a pandemic has been one of the most isolating, stressful, and anxiety-inducing experiences that I have ever endured. It meant constantly calculating everything I did, learning from mistakes where I needed to be more careful, but most of all- it meant watching the world inside a glass bubble. It meant my…
Vaccinated. I felt so many emotions when the shot went in as an individual who is high-risk amidst a pandemic. Gratitude. Hope. Relief. I do not want this post to be about myself, however. These emotions are for the front line workers who have been fighting against a viral war for over a year. For…
A little photo dump of some special events since 2021 started. My relationship with my body has always been complicated, a love hate relationship. Learning to love a body that has kept me alive, yet also threatened my existence multiple times, is a delicate concept. Since I got sick the phrase “peace within” has…
A journal entry of my thoughts from Rare Disease Day, February 28th 2021: My rare disease truth: I always say I feel like I am living a double life. One side is being a 21 year old college student, with the typical activities of exams, FacetTiming friends, laughing with my sisters, finding new books to…