An OCEAN of Change: The Impact of an RA Diagnosis on My Big Five Personality Traits

Laura Sambursky shares their personal experience of being diagnosed with rheumatoid arthritis (RA) and how it has affected their personality. Before the diagnosis, Laura was healthy, confident, and outgoing. However, after developing painful symptoms and receiving an RA diagnosis, they had to make significant lifestyle changes and start various medications. This experience has led to changes in their personality traits, such as becoming more cautious, less outgoing, and more prone to anxiety. Laura] reflects on how accepting these changes has helped them improve their quality of life.

Finding the Balance: Regaining My Strength While Living with Sjögren’s & POTS

Robert Fearon shares their journey of living with Sjögren’s syndrome and Postural Orthostatic Tachycardia Syndrome (POTS). Robert describes the challenges of getting a diagnosis, which took nearly 13 years, and the difficulties of managing symptoms like severe pain, fatigue, and deconditioning. Robert emphasizes the importance of finding a knowledgeable physical therapist who helped them create an individualized exercise routine. Over time, they have been able to regain strength and improve their quality of life, although they still face challenges like pain, fatigue, and the need to carefully balance their exercise routine.

Healing Together: The Role of Black, Indigenous and People of Color (BIPOC) -Only Chronic Illness Spaces in Comprehensive Care



 The abstract explores the significance of BIPOC-only chronic illness support spaces in providing comprehensive care for patients. It emphasizes the unique challenges faced by BIPOC individuals with chronic illnesses, including systemic racism, health disparities, and cultural stigma. These exclusive spaces offer a sense of community, cultural understanding, and tailored support that traditional healthcare settings often lack. The abstract highlights how these spaces can improve mental and physical health outcomes by fostering a supportive environment that addresses the specific needs of BIPOC patients.

How Completing a Systematic Literature Review Improved How I Research My Own Rheumatoid Arthritis and Comorbidities

Shelly Fritz discusses their experience of conducting a systematic literature review on rheumatoid arthritis (RA) and its comorbidities. This rigorous process enhanced their ability to find and analyze relevant research, leading to a deeper understanding of their condition. The author highlights how the skills gained from the review process, such as identifying high-quality studies and synthesizing findings, have empowered Shelly to make informed decisions about their healthcare and better manage their RA and related health issues.

Involving Pediatric Patients in Their Own Care 

In this abstract by Whitney LaBar they discuss the importance and benefits of involving pediatric patients in their own healthcare. It emphasizes that engaging children in their treatment plans can improve adherence to medical advice, enhance their understanding of their health conditions, and foster a sense of responsibility and independence. The abstract highlights various strategies to achieve this, including age-appropriate education, shared decision-making, and the use of digital tools to facilitate communication and monitoring. By empowering young patients, healthcare providers can improve outcomes and support the long-term well-being of pediatric patients.

Living Well with a Rare Rheumatic Disease – Becoming a “Precision” Patient on the Horizon of Precision Medicine

Ida shares her personal journey with a rare, chronic rheumatic disease, Granulomatosis with Polyangiitis (GPA), which began with symptoms like joint pain, night sweats, and sinus congestion. After a series of hospitalizations and treatments, including Rituximab (RTX), she has learned to manage her condition proactively by staying informed about the latest medical information and working closely with her healthcare team. Ida emphasizes the importance of patient advocacy, communication, and trust in the patient-physician relationship. She also highlights how precision medicine is becoming a promising approach for managing autoimmune diseases, allowing patients to take a more active role in their care.

Living Well with Chronic Illness: Decades with MCTD

Carol Kaminski, shares her journey of living with Mixed Connective Tissue Disease (MCTD) for nearly 40 years. Initially experiencing symptoms like fatigue, joint pain, and swollen fingers, she was eventually diagnosed with MCTD after several medical consultations. Over the years, she learned to manage her condition through various therapies and lifestyle adjustments, such as using leather gloves for racquet sports to protect her hands and requesting work accommodations to avoid sunlight. Despite ongoing challenges like swallowing issues, Carol has found ways to live well with her chronic illness, and her disease has been in remission for the last 15 years.

My Journey with Diffuse Scleroderma and Interstitial Lung Disease: A Pharmacist’s Perspective

Joseph Washington, shares his personal experience of living with diffuse scleroderma and interstitial lung disease (ILD). He describes how his symptoms began in high school with Raynaud's phenomenon and progressed over time. After being diagnosed with systemic sclerosis (SSc) based on blood tests revealing positive anti-SCL70, he started treatment with amlodipine for Raynaud's symptoms and later transitioned to other medications like mycophenolate mofetil (MMF), nintedanib, and tocilizumab. Washington highlights the challenges of managing a rare disease, including navigating insurance and accessing specialty drugs. His background as a pharmacist helped him advocate for himself, enroll in manufacturer-sponsored assistance programs, and reduce out-of-pocket costs. He emphasizes the importance of collaborative specialist care and patient advocacy in managing his condition and maintaining a high quality of life.

Reunion with Forgotten Relationships and Memories

Noriko Okochi reflects on how living with a chronic illness impacted their personal relationships and memories. Over time, the demands of managing the illness led to the neglect of certain friendships and connections. The abstract highlights the emotional journey of reconnecting with these forgotten relationships and the joy and challenges that come with rekindling old bonds. It emphasizes the importance of support networks and the therapeutic value of remembering and cherishing past experiences as part of comprehensive care for chronic illness.

Sweat It Out: How the Sauna Has Helped Me Cope with Rheumatoid Arthritis

Eileen Davidson, shares her personal experience of using sauna therapy to manage her rheumatoid arthritis (RA) symptoms. Since her diagnosis in 2015, she has found that regular sauna sessions help alleviate muscle pain, stiffness, and chronic fatigue associated with RA flares. The sauna has also improved her joint mobility, making it easier to return to physical activities after periods of inactivity. Beyond physical benefits, the sauna has positively impacted her mental health by providing a sense of relaxation and escape, especially during harsh Canadian winters. Eileen emphasizes the importance of incorporating non-pharmacological strategies like sauna therapy into RA management routines for better overall well-being.

Walking Away from Arthritis Pain: Exercise Helped Me Manage Sarcoidosis and Osteoarthritis Physically and Emotionally

 The author, Bridget Kelly, shares her journey of managing sarcoidosis and osteoarthritis through exercise. Initially experiencing severe joint pain and neuropathy, she was diagnosed with sarcoidosis after a series of tests. Despite the challenges, Bridget committed to a daily walking routine, which helped her manage her symptoms both physically and emotionally. Over the years, she faced additional health issues, including osteopenia and osteoporosis, and underwent surgeries for tendon tears and spinal issues. However, her dedication to walking and strength training allowed her to regain strength and maintain her health. Bridget emphasizes the importance of staying active and committed to self-care to manage chronic conditions effectively.

Whispers of Resilience: Navigating Life with Rheumatism 

The author, Vinchelle Hardison, shares her childhood experience of living with a rheumatic condition, which included Mixed Connective Tissue Disease (MCTD) with components like arthritis, scleroderma, dermatomyositis, and lupus. She describes the emotional challenges of growing up with a chronic illness, such as feeling different from other children and dealing with numerous medical tests and treatments. Vinchelle emphasizes the importance of providing age-appropriate resources and support to help children understand and cope with their diagnosis. She also highlights the role of resilience and the impact of supportive physicians in helping patients navigate their new reality with confidence and strength.