Announcing Arthritis Life!
I am proud to launch Arthritis Life: a video project featuring life hacks, patient stories, provider interviews, product reviews and more. Check out my Youtube channel trailer above! My mission is to educate, empower and inspire patients with arthritis and their providers through sharing life hacks and personal stories. Interested in participating in this project or learning more? If you are a patient or provider who’s interested in being interviewed, please contact me via the contact page above. Please let me know if you have any requests for life hack video topics! Please subscribe to my Youtube Channel so you’ll be the first to know about new video uploads. If…
How to Enjoy the Santa Story Without Lying to your Child
By presenting the “Santa Story” as fiction, you can still celebrate the fun traditions of the Christmas season while avoiding the downsides of deceiving your child. *This post was updated on 12/11/18 to include an FAQ section and some quotes from other parents. Every December, a few articles circulate with titles like, “How to Tell Your Kids the Truth About Santa Without Breaking Their Hearts.” They encourage parents to tell children they get to “become Santa” and thus “the Santa construct is not a lie that gets discovered, but an unfolding series of good deeds and Christmas spirit” (quote attributed to an anonymous Facebook post, which has been widely shared).…
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…
To my Chronic Illness Medical Team…
It was very therapeutic for me to write a guest blog post for CreakyJoints, a patient advocacy and education site that focuses on arthritis and related conditions. To my chronic illness medical team is my love letter to the often unsung heroes in the medical profession: providers who care for patients like me who have chronic, complex, invisible illnesses. I am so fortunate to have had dozens of compassionate, caring providers during my 16 years with rheumatoid arthritis. I hope to inspire other providers to go into some of the less popular specialties such as pediatric rheumatology, where there are currently some shortages nation-wide. You won’t have the most straightforward patients,…
Strategies for Neurotypical People to Develop Empathy for Autistic People
Historically, there has been much discussion about the extent to which autistic people experience empathy. I am using the phrase “autistic people” rather than “people with autism,” per the recommendation from the Autism Self-Advocacy Network. Recent studies indicate that while autistic people may experience and demonstrate empathy in different ways from neurotypical people, they do indeed experience it, sometimes to intense degrees. The debate is well summarized here. Throughout this discussion, I have observed a curious and glaring omission: what about how and whether neurotypical people empathize with autistic people? One of the basic tenets of social skills is reciprocity, an attunement to the back and forth nature of social…
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…
Childhood Memories and Lessons that Influence my Work as a Pediatric Occupational Therapist: Part 1
Below, I will share childhood memories that influence my daily work as a pediatric occupational therapist. Accessing my childhood memories helps me identify with a child’s perspective, even if that child has a specific disability or challenge that I did not experience. When I find myself mystified by a child’s behavior or perspective, I conjure up vivid memories of what it was really like to be a child. Remembering the complexity of my social, emotional and academic experiences helps build a crucial bridge of empathy between myself and my students. My lessons are geared towards older elementary aged students who are mostly in the general education setting, as those are the children…
A New Way to interpret “But You Don’t Look Sick”
I am happy to report that I am now blogging on the Creaky Joints website. Creaky Joints is a nonprofit that provides information sharing, support, and advocacy resources for persons with arthritis and related conditions, many of which are chronic, invisible illnesses. My first blog post was A New Way to Interpret “But You Don’t Look Sick – please note the link is currently broken but I’m told it will be fixed soon (as of 10/2019). While we’re waiting for it to be back up, I’ve posted the text for this post below. ————————————————————————————————————– When I communicate my diagnosis of rheumatoid arthritis to someone for the first time, I’m often told…
The Storm After the Calm: 8 Lessons Learned After A Tumultuous Postpartum Experience With Rheumatoid Arthritis
I was recently honored to share my pregnancy and postpartum journey with the popular and helpful website Autoimmune Mom, and it is now housed on the American Autoimmune and Related Diseases Association site. The full story can be found here. The post details my journey from a relatively tranquil pregnancy to a postpartum “storm” due to my chronic illness issues (including rheumatoid arthritis). It includes three sections after Charlie’s birth: Survival, Mastitis and Flare-Ups (0-3 months) Feeling Like I “Almost Got This,”or Wayward Optimism (4-16 months) The New Normal: Accepting that life/parenting/my health is now in a permanent state of flux (16 months to present). The gist of the post is that therapy…
Why and How Do Pediatric Occupational Therapists Play Games?
Why do pediatric occupational therapists (OTs) play games? Pediatric therapist are often asked why we spend time “just” playing games with our clients. In addition to being engaging to children, games are powerful tools through which we work on a variety of skills including fine motor, visual-motor, gross motor, strength, social, emotional, sensory, and attention, planning and other executive functioning skills. OTs are experts in adapting games to fit a child’s goals. A competent occupational therapist will never “just play” a game with a child. The game itself and many aspects of the game’s set-up will be consciously chosen and adapted on a minute by minute basis so as to support the child’s…