(This is a piece for my church in the season of Advent) As you can probably guess, so much of my time is spent waiting: for a doctor visit inside or outside the hospital, for a bed in the ER, for a bed in the hospital, for the nurse to bring medicine, for the medicine… Continue reading On Waiting
The topic of isolation & loneliness has come up quite a bit in the past week. There is isolation in chronic illness, not working/working remotely, changing your career path, living alone, etc. Some new friends & I discussed it at a conference on non-clinical work for physicians. One of my favorite podcasters (Laura McClellan) recorded… Continue reading Am I not alone?
Today marks 100 days in the hospital for 2019. (actually 101 because an ER only visit was not recorded.) Honestly, it feels disheartening to have reached a negative milestone. I know the exact numbers don’t have specific meaning but the accumulation of 100 days when we still have 2.5 months left in the year just… Continue reading 100
Hey y’all! I know I’ve been slacking with my writing. I want to share my understanding of hope from my circumstances. Hold me accountable to write. You have my permission to lay on the pressure 🙂 Just don’t be too mean. On Wednesday I had a port placed in my right chest. It became an… Continue reading Update: 25 July 2019
Hi y’all! I’m unfortunately back in the hospital for the same symptoms of nausea/vomiting and abdominal pain. I was discharged April 8, returned April 14 – after a late night (1am) call to my parents. I really appreciate all that my parents do for me: carrying bags & boxes up & down the stairs, answer… Continue reading Update: 16 April 2019
Hi All (friends & family)! Sadly, I am readmitted to the hospital in Wilmington. (NHRMC) for intractable nausea & vomiting which started last night & did not relent. We (mom & I) arrived here around 3am Tuesday morning. I had managed 11 days out of the hospital. This is hard: The gastroenterology (GI) specialists are… Continue reading Update: 2 April 2019
Thanks, Facebook! Four years ago, on March 6th (yeah, I know I’m a little late – I have excuses) I started receiving formula through a feeding tube. This was a huge step for me, and my doctors. Don’t get me wrong, I never “wanted” a feeding tube or formula instead of eating but I knew… Continue reading Four Years
I’ve struggled to write this post, to answer this question, to be vulnerable to you – my friends who ask this all the time. Humbly I share my needs with you. Please do not feel obliged. I put this out here for the people looking for ways to help – mentally, emotionally, financially. If you’re… Continue reading How To Help?
I LOVE the snow, the feeling of it beneath my board, the glare of the sun and the curves made as I flow down the mountain. My illness has tried to hold me back from snowboarding, but I’m not (totally) letting it. My feeding tube has frozen on the mountain soooo many times and the… Continue reading Snowboarding Tips / Tricks
Why am I here tonight? What led me to create this blog? In January 2015, I got sick – not sure why but we’re working on that. Hopefully there will be an entry one day with an explanation. Basically, I can’t tolerate enough food / drink to stay nourished / hydrated. This led to the… Continue reading Why?