Where have I been, and where do I go from here? It's been quite a while since I've shared anything on my blog, and I never really had a regular posting schedule to begin with. When I first started, my intention was to make this a space for the things I love, the things I've … Continue reading Updates + Fresh Start
Marfan Syndrome Awareness for Rare Disease Day
Today marks the end of Marfan Syndrome Awareness Month, as well as Rare Disease Day 2018! I was planning on posting earlier in the month about Marfan syndrome, but it's been a very busy month. The good news is, by posting today I can accomplish two things at once- raising awareness for Marfan and rare … Continue reading Marfan Syndrome Awareness for Rare Disease Day
What Determines a Legacy? Reflecting on MLK Day
"Life's most persistent and urgent question is, what are you doing for others?" Dr. Martin Luther King, Jr. I've been reflecting on what it means to leave behind a legacy on this day dedicated to Martin Luther King, Jr. Although the entirety of the American civil rights movement cannot be attributed to just one person, … Continue reading What Determines a Legacy? Reflecting on MLK Day
Book Review: Disability Representation in “Tower of Dawn” by Sarah J. Maas
"Using the chair is not a punishment. It is not a prison," he said. "It never was. And I am as much of a man in that chair, or with that cane, as I am standing on my feet." Chaol Westfall, Tower of Dawn If there is one word that sums up my reaction to … Continue reading Book Review: Disability Representation in “Tower of Dawn” by Sarah J. Maas
The Struggle of Being Undiagnosed
We grow up thinking that the world is black and white. You're sick? Go to the doctor, and they'll help you feel better. It's an easy fix. Unfortunately, as we grow, we realize that it's not entirely that simple. Doctors can't always help. People die of cancer and other illnesses. At least doctors can identify … Continue reading The Struggle of Being Undiagnosed
Why I Don’t Want You to Comment on My Weight
"You're so skinny!" "¡Que flaca eres!" "Wow, you've gained weight!" "¡Nena, te estás poniendo gordita!" In any language you speak, you're bound to encounter someone who's more than willing to comment on your weight. Whether it's a well-meaning relative, a nosy stranger, or rude person on the internet, the message is the same- your appearance, … Continue reading Why I Don’t Want You to Comment on My Weight
When Do We Let Go of What We Want, and Focus on What We Need?
It seems like it's human nature to always seek something to accomplish in life. Not just small things, but big things. Conversely, we make the small things appear crucial to our success. In order to be successful, we believe that we must get everything right, down to the smallest detail. When we mess up- when, … Continue reading When Do We Let Go of What We Want, and Focus on What We Need?
Do Not Let That Light Go Out: Coping with Chronic Illness
Weariness- this is a feeling that those of us living with chronic illness know all too well. Day in and day out, we push past our limits to accomplish basic, everyday tasks. These tasks are finished quickly by average person, without being given a second thought. To us, they seem like a marathon. We have … Continue reading Do Not Let That Light Go Out: Coping with Chronic Illness
Welcome to My Blog: An Introduction
Hello everyone, and welcome to my blog. 😊 First off, I'd like to take a moment to introduce myself. I'm Nicole, a teenager living with Marfan Syndrome and POTS (Postural Orthostatic Tachycardia Syndrome). My pastimes include reading, photography, and listening to Hamilton & Taylor Swift. As demonstrated by the name of my blog, I'm a … Continue reading Welcome to My Blog: An Introduction
The Marfan Muggle 