Reflecting at the End of a Decade
Wait, it’s 2020!? Where did this decade go?? Social media is bursting with posts comparing life now to ten years ago. For spoonies, those decade comparisons can hit especially hard. Perhaps ten years ago you were healthy, unaware of any medical mishaps you might be facing soon. Maybe you hadn’t yet had to give up […]
Hosting Loved Ones With Chronic Illness
Having just recovered spoons from the Thanksgiving festivities, it is now time for another round! With the solstice just past, Chanukkah just beginning, Christmas and Kwanzaa around the corner… not to mention New Year’s Eve! Whether you’re celebrating a holiday, embracing the new season, or simply making use of time off to visit with loved […]
Traveling With a Chronic Illness: Tips For Packing & Preparing
Whether visiting family or doing some solo trip, this time of year can be full of traveling. Knowing what to pack for your condition can feel daunting, especially with a new diagnosis. The best thing to do is to determine your packing list well ahead of time. Trying to remember everything while under pressure and brain […]
Sarah Hyland Wants Us to Celebrate What Our Bodies Are Capable Of
Sarah Hyland is no stranger to the challenges of living with chronic illness. After being diagnosed with kidney dysplasia as a young child, she received kidney transplant from her father in 2012. A few years later, that kidney failed, leading to a second kidney transplant, donated to her by her younger brother. She knows what […]
4 Pro Tips on Traveling with a Disability & Chronic Illness
Traveling allows us to explore the world, take adventures and discover ourselves in new places. When living with a chronic illness or disability, however, traveling can sometimes feel daunting or overwhelming. Fears around unexpected delays, lost luggage, irregular sleep, accessibility, and changes in diet and environment may turn traveling off to some. But we are […]
Fighting for Inclusion Within the Adaptive Wear Industry
Diversity, Equity, and Inclusion is no longer a fringe term – it’s happening everywhere. Over the past few decades, industries have started to embrace our sizes, shapes, colors, and genders. We have seen people surpass stereotypes over and over again and start to pave the way for future successes, from highly successful female CEOs to […]
Survival Guide: Managing Dietary Restrictions this Season
It’s that time of year again — traveling, running around to get everything done when you’re not traveling, feasts, gatherings with family members who just don’t yet “get it”… ample opportunities to use up your limited spoons. If food is a particular stressor for you, here are some tips to keep this season’s eating stress-free! […]
Able Minded, Unable Body
I’m sure many of you can understand and relate when I say, we are so capable of doing just about anything, at least from our minds aspect. When it comes to my body, often times, things I intended or planned on doing don’t really go the way I hoped. My chronic illnesses are to blame […]
Gratitude for Those Who Lift Us Up
There is a prayer in the Jewish tradition called Modeh Ani, or in English, “I give thanks.” It is supposed to be recited every morning, while still in bed or during the morning routine, as a way to start the day with gratitude. My mother decided about a year ago that she wanted to try […]
Adaptive Fashion, Entrepreneurship, and Chronic Illness: Conversations with Keisha Greaves
This month as part of our Friends in the Fight interview series, Emily sat down with Keisha Graves, founder of Girls Chronically Rock. Keisha lives with Limb-Girdle Muscular Dystrophy and, like Emily, she found her inspiration for Girls Chronically Rock while pursuing her masters degree and knows what is is like to be a young, […]
Understanding Physicians’ Perspectives
As chronic patients, we are acutely aware of the strain that can creep into patient-physician relationships. You can try everything in an appointment — being quiet and polite, assertive and confident, well-informed and prepared… and still end up feeling that something went wrong. Every negative experience with doctors who don’t listen or believe our stories, […]
Top 4 Things Patients Should Know About Life as an RN
Nurses are selfless and admirable members of our community who play a primary role in taking care of others. As a patient, our main concern is our health and getting better, but sometimes we need to think about the other pieces to the puzzle. After all, we all share the common goal of helping sick […]