The last few months have been a whirlwind for me due to all of the life-changing events I’ve been experiencing. Autoimmune disorders and stress do not mix well, and it took me a while to recover from moving, starting a new career, and experiencing a scleroderma flare-up. I…
I may not be able to blow out all 44 candles in one breath, but I did get to live another wish. I’m here, and I’m celebrating another trip around the sun with nothing but gratefulness and love in my heart. Birthdays no longer just tack a year onto my…
As a woman with scleroderma, I’ve faced many unknowns regarding my body and health over the last 21 years. Every day is a new adventure in my own “series of unfortunate events.” Since my diagnosis, I’ve restructured my life to make my health a priority and become hyperaware of…
How many times have you asked yourself, “Is this scleroderma?” Odd sensations, abnormal changes, pain, and even visible deformities — there’s no shortage of strange symptoms with this disease. I used to embark on a fruitless journey to discover answers, spending hours researching and probing fellow patients in support…
About a month ago, I popped into Target. I grabbed a cart and started to sanitize it. While wiping the handle, I heard laughter behind me. A group of teenage girls were waiting for the sanitizer wipes. Now, I know I don’t necessarily look sick. If you knew nothing…
The day after my high school prom, a group of us went to an amusement park to continue celebrating. After navigating the ticket line, I noticed a new attraction that looked like one of those free-fall water slides. As I looked up at the endless zigzag of stairs while shielding…
Lately, my life has been at a standstill. For the past 15 years, I’ve found purpose in being a scleroderma advocate, using my voice to share my journey and help others. But I feel like advocacy has started to lose its shine. Six years after my diagnosis,…
“Your life is controlled by what you focus on.” I read this Tony Robbins quote when I was diagnosed with scleroderma in 2014, and my takeaway was to focus on my strength and will to survive. I came across this quote again, eight years later. Only this time, I realized…
I have always thought of myself as someone who thrives on being independent. But living with scleroderma does not afford me that luxury. Scleroderma is a major component of my life. Plainly speaking, it’s not something I can stash away or bring out when I want to, like a…
When I was diagnosed with scleroderma 21 years ago, it was painful to learn that I was no longer an average 19-year-old who wanted to be a nurse. I was now a patient with a disease that most people hadn’t heard of. As time passed and I slowly grew…
Get regular updates to your inbox.