Reproductive healthcare is often discussed with words “choice”, and I wanted to take a moment to shine a light on those who do not have a choice in the level of action we must take. At ages 13 and 16 my life changed forever. I watched as my body fought devastating intestinal failure for multiple…
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…
Grief. I have known this emotion since the age of 13. My life changed forever after my chronic illnesses took an eternal presence in my life. I have grieved daily since I was only 13 years old. It has never stopped. Grieving the fact I have had two surgeries since this summer, with the discussion…
Life is such a wild roller coaster. It has the highest of highs. Living life to its fullest. Experiencing new adventures. Days of no pain and only bliss. New friendships. Being alive. Happiness. Health. Stability. Peace. It also has the lowest of lows. Illnesses. Pandemics. Uprisings against horrible social injustices and human rights issues.…
The last time I posted on here was at the end of February, discussing the fact that motility issues were creeping back into my life once more. At that time, that issue was concerning and overwhelming. I had no clue what was to come in the following months- none of us did. I will…