When I first heard about the new document from CreakyJoints, Raising the Voice of the Patients: A Patient’s Guide to Living with Rheumatoid Arthritis, I immediately thought of my diagnosis story and how those first few months of treatment and doctors visits could have gone differently.
I’ve had Type One Diabetes for twenty-eight years, since I was eight. Diabetes is fairly straightforward in terms of treatment. My rheumatoid arthritis diagnosis, five years ago, was a whole new ball game. My rheumatoid factor (which you can read about in this guide, page 12 to be exact!) was positive so my PCP (Primary Care Physician) sent me off to a rheumatologist.
Before my visit, I did what a lot of patients do, I hit the internet. I looked up the disease (scary photos of body parts emerged) and treatments (infusions with scary side effects- cancer). I didn’t know which sites to trust, I was frankly just desperate for information. When I finally did see my rheumatologist, I had tons of labs drawn, every joint in body examined, x-rays ordered, methotrexate and folic acid prescribed, and a bunch of pamphlets handed to me. In addition to feeling absolutely horrible physically, I felt overwhelmed.
This new patient’s guide to life with rheumatoid arthritis, could have really helped me and my family back then. It could have explained to my husband and my parents what my disease was, in a way they could easily understand. It could have armed me with the tools to seek out the best (and most affordable) treatment for me. It would have empowered me to be my own advocate and realize early on that I am in control of my RA journey.
I have spent the past five years reading articles about the latest RA treatments, trying to figure out which type of exercise would be best for me and my joints, and trying to further my advocacy. Like many of you, I have viewed the American College of Rheumatology’s guidelines in the past and tried to translate them into something that would make sense for my disease and my body. This guide takes everything that patients like me are seeking and organizes it into one, easy to read package. And most importantly, this guide covers all aspects important to patients: medications, disease knowledge, movement/exercise, diet/nutrition, and mental health.
Whether you’re just starting your RA journey or have had the disease for decades, I know you’ll find value in this new document. I encourage you to read it, to share it with fellow patients and to share it with caregivers. And if you walk away from it with anything, at the very least, know that you are never alone on your RA journey.
Click here to learn more and download your free copy.