MONTH IN REVIEW: APRIL HIGHLIGHTS AND WHAT’S NEXT
Welcome back to Connective Strength’s blog. April was a bustling month filled with invaluable information, and we’re excited to share these highlights with you.
THE UNSPOKEN STRUGGLES OF MOTHERHOOD: WHEN EVERY DAY IS A BATTLE
Being a mom is relentless. It tests the limits of your strength and often breaks them. And for those of us who are managing chronic illnesses while raising children with special needs, each day can feel like a personal battle—one marked by pain, exhaustion, and a profound sense of isolation.
A MONTH OF COMMUNITY, SUPPORT AND EDUCATION
This past month has been a whirlwind of activity for Connective Strength, filled with inspiring conversations, informative presentations, and meaningful connections. Our journey through the month took us from Marysville to Kirkland, and finally to the University of Puget Sound, each stop marked by significant events aimed at fostering community and spreading awareness about Ehlers-Danlos Syndrome (EDS) and related conditions.
THE IMPORTANCE OF THE PATIENT/PROVIDER RELATIONSHIP: A FOUNDATION FOR HEALING
In the intricate dance of healthcare, the relationship between patient and provider plays a central role. It’s more than just a series of appointments or treatments; it’s a partnership built on mutual respect, appropriate communication, and professional behavior. Crucially, this relationship is not a battleground of patients against providers, but rather a collaborative effort towards a common goal: health and well-being. Here’s why this partnership is pivotal in the realm of healthcare.
EXCITING NEWS! OUR KICKSTARTER IS NOW LIVE!
We are thrilled to announce that our much-anticipated book, “Graceful Strength: Living Resiliently with Ehlers-Danlos Syndrome,” has officially launched on Kickstarter!
CONTRIBUTE TO ‘EDS EMPOWERMENT: FINDING YOUR VOICE AND RESILIENCE IN THE FACE OF CHRONIC CONDITIONS’
Eastside EDS is excited to announce the development of our upcoming book, ‘EDS Empowerment: Finding Your Voice and Resilience in the Face of Chronic Conditions.’ This publication, primarily authored by patients for patients, will also feature a special section by medical professionals. Led by Zoë Jorna-Jackson, ‘EDS Empowerment’ is a beacon for those on their journey with Ehlers-Danlos Syndrome (EDS).
NAVIGATING CHRONIC ILLNESS TOGETHER: THE POWER OF SUPPORT
Chronic illness can be an isolating and challenging journey. It often feels like a never-ending battle, filled with doctors’ appointments, treatments, and the unpredictability of symptoms. In the midst of this struggle, a support system can make all the difference. Stacey, David, and Zoë, have been buddying up and attending appointments together while checking in regularly, exemplifying the profound importance of supporting each other through chronic illness journeys.
SILVER RING SPLINTS: DO THEY WORK
The specialized hand therapists of Hands for Living in Redmond and Lynnwood, WA share their perspective from working regularly with people with joint hypermobility.
Over the past 15 years, we have fitted many people with Silver Ring Splints from the Silver Ring Splint company, from Etsy providers, and from custom-making our own version out of jewelry wire or plastics.
THE POWER OF AN ACCOUNTABILITY BUDDY FOR THOSE LIVING WITH CHRONIC ILLNESS
Living with a chronic illness can be an enduring and challenging journey. The daily struggles, pain management, and emotional toll can make it feel like an uphill battle. In such circumstances, having a support system becomes paramount for maintaining physical and mental well-being. One invaluable form of support is an “accountability buddy.” This is someone who accompanies you on your journey, providing not only emotional encouragement but also a structured approach to managing your health. In this article, we’ll delve into the reasons why having an accountability buddy can make a significant difference for those living with chronic illness.
A DAILY BATTLE: LIVING WITH POSTURAL ORTHOSTATIC TACHYCARDIA SYNDROME (POTS)
Postural Orthostatic Tachycardia Syndrome (POTS) is a complex and often debilitating condition that affects the autonomic nervous system. While it may sound unfamiliar to many, those living with POTS face numerous challenges in their day-to-day lives. In this blog post, we will delve into the experiences of individuals battling POTS and shed light on the physical, emotional, and social aspects of living with this chronic condition.
EMBRACING PARENTING AMIDST CHRONIC ILLNESS: FINDING STRENGTH IN THE FACE OF ADVERSITY
Parenting is often described as one of life’s most fulfilling journeys, filled with joy, love, and profound growth. However, for those living with chronic illness, this journey can be accompanied by a heavy burden of guilt, self-doubt, and feelings of failure. The relentless physical and emotional challenges can make it seem impossible to meet the expectations we set for ourselves as parents. In this blog post, we will explore the unique struggles faced by parents living with chronic illness and offer insights on how to navigate these difficult waters while still finding fulfillment and joy in parenthood.
A PROFOUND GRATITUDE: A TRIBUTE TO THE CAREGIVER
Living with a chronic illness is a challenging journey, often filled with physical and emotional struggles. In the midst of these difficulties, there are individuals who shine as beacons of compassion, support, and selflessness. I am writing a heartfelt tribute to the remarkable caregivers who are dedicating their lives to helping those with chronic illnesses. With deep gratitude, I acknowledge their invaluable contributions and the profound impact they have on the lives of individuals facing chronic illness.
HOW DO WE GO OUT OF BUSINESS?
How to put ourselves out of business seems like an odd question for a brand-new nonprofit startup. Maybe not so; a nonprofit aims to fix a problem, and when that problem is fixed, there is no need for the nonprofit.
LOWER EXTREMITY NERVE COMPRESSION IN HYPERMOBILE AND EHLERS DANLOS (EDS) PATIENTS
What is Collagen?
Collagen is the basic building block for everything in the body. It’s found in ligaments, tendons, skin, and nerves. The scaffolding of those tissues is made of collagen.
DYNAMIC DISABILITIES
Over the years, mainstream culture has led us to believe that all disabilities are static and visible: that symptoms are always present. However, many disabled people don’t experience this reality.