My Invisible Illness Photo Shoot
Introduction People often remark that those of us with invisible illnesses “don’t look sick.” However, we deal with substantial physical and emotional challenges. To shed light on the often hidden side of living with chronic illness, I completed an “Invisible Illness Photo Shoot” with dear friend and phenomenal photographer Jessica Keener Photography. Goals of the photo shoot 1. To illustrate that you cannot tell what someone is going through just by looking at them. I hope that these photos help people remember to “be kind, for everyone you meet is fighting a hard battle” (Ian MacLaren). 2. To help those who have similar invisible challenges not feel alone. I have benefited from…
Parenting Without Pain: Dressing and Clothing Life Hacks
I am proud to be a guest blogger with the wonderful patient resource Creaky Joints. I am currently writing a series of posts on the topic of Parenting Without Pain. The posts will tackle how parents with arthritis or other painful joint conditions can approach activities of daily living involved in caring for children in a way that minimizes joint pain. My first topic is Dressing and Clothing Life Hacks. In this post, I cover everything from clothing selection (more zippers, less snaps!) to joint protection strategies, regardless of materials used (such as using a hand splint, as pictured below). Click here for the full post! (Note: as of 2019 the post isn’t available due…
My Chronic Illness Playlist
Why music? While managing my autoimmune disease rheumatoid arthritis over the last 12 years, I’ve found music to be helpful in a variety of situations. Some songs help me calm down when I’m anxious, other songs allow me to just “be” in a sad moment, and some music inspires me or puts everything in perspective. Not surprisingly, research has shown that listening to music can have many positive effects on one’s mood as well as other aspects of the mind. Research specifically on the use of music in persons with chronic illness have found it to have beneficial effects as well. With that in mind, I’d like to share my personal “chronic illness playlist.” I’ve divided the songs…
Bringing Home Baby Without Breaking Your Body – How to protect your joints when you have arthritis and a new baby
Despite infants’ diminutive size and stature, caring for a new baby is a very physical job! Many new parents and caregivers experience joint or muscle pain after repetitive stress caused by lifting, carrying, diapering, and holding their baby. It’s estimated that between 25-50% of new parents experience DeQuervain’s tenosynovitis (or “Mommy thumb”) alone. It is also common to have pain in other areas such as the wrists, shoulders and back. These issues are of course exacerbated by chronic underlying illnesses such as autoimmune arthritis. From my experiences as a new mom with rheumatoid arthritis and from my training as an occupational therapist, I would like to share tips on my…
The Role of Facebook Communities in Social Participation for Persons with Rheumatoid Arthritis: A Content Analysis
Research overview & summary My colleague Kristin Jones, OTR/L and I conducted the following qualitative research. It details the most frequent topics of conversation for persons with rheumatoid arthritis who engage in disease-specific Facebook groups. My experiences as a patient participating in these groups inspired this research. In order to objectively assess the communication content of these social media groups, Ms. Jones and I performed the data analysis seen below in the data overview section. The poster is pasted below and can also be found at SlideShare. Research poster Significant Findings 1. The majority of Facebook group posts served to provide information or support. Information was provided most often in the form of advice…
Bringing Home Baby: Tips for Meeting the Caregivers’ Basic Needs
It’s hard to put into words how simultaneously joyful, exhausting, transcendent, stressful, surreal, and miraculous the first few months home with an infant can be. Now that I’m emerging from the fog but the experience is still fresh in my mind, I’d love to share some tips and strategies that helped me adjust to parenthood* over the last five and a half months. While pregnant, I found countless resources for how to care for a newborn, from feeding to sleeping to swaddling to safety. However, there were less resources available for how to care for myself and other primary caregivers in the newborn days. Thus, I will focus on these…
10 Years with Rheumatoid Arthritis: What’s the Impact?
I recently realized that I have lived with rheumatoid arthritis (RA) for ten years, or roughly a third of my life! In that time I’ve graduated college, traveled to 12 different countries, lived in 3 states, traveled to/through over 15 states, started swing dancing, adopted 2 kittens, earned a Masters degree in occupational therapy, got married, bought a house, and more. I’ve also spent a considerable amount of time and money managing this chronic illness and mitigating it’s effects so I can live with the best quality of life possible. In honor of my diagnosis anniversary, I’d like to share how RA has (and hasn’t) affected my life over the…
Arthritis Humor and the Therapeutic Powers of Laughter and Social Media
Last week I started a GIF based Tumblr blog called “Arthritis Humor.“ My goal for this blog is to help patients with autoimmune arthritis (and other chronic illnesses) transcend their experiences via humor, and feel less alone by connecting to others through shared laughter. Why find the humor in arthritis? As a healthcare professional and patient, I will concede that there is nothing intrinsically funny about either category of arthritis: osteoarthritis (“wear and tear” arthritis, the kind associated with aging) or autoimmune arthritis forms such as rheumatoid arthritis (whereby one’s own immune system mistakenly attacks the lining of one’s joints and other body systems as well). However, as a patient with rheumatoid arthritis (RA), I believe…
Shopping with Arthritis: My favorite pain-reducing shoes
When people find out that I have rheumatoid arthritis (also known as autoimmune arthritis),I’m often asked how I’m able to swing dance and what shoes I find are most comfortable. As part of the blog carnival “Non-medical ways to ease rheumatoid arthritis pain,” I’d like to share some of my favorite shoes that reduce or prevent foot pain. While I’m at it, I’ll also share my favorite professional and casual shoes and some simple gadgets that help those with arthritis put on and take off shoes easier. I hope you find it useful, and hey, now that the holidays are here, you just might find a gift idea for a…