I’m approaching three years into my RA journey, in fact it was around August 2014 that I started feeling ‘not quite right’, just a general unspecific feeling of malaise. The swelling and pain waited until November to join the party!
My way of coping with anything life has thrown at me is to research the hell out of it, as a high level manager for some years I was very used to problem solving, tackling challenges, call it what you will. Strip down your issue to the core, look at its impact, find a workable solution then plan implementation. Logic & reason.
Obviously this approach alone doesn’t work for RA or any other chronic illness, but I still find myself fascinated by researching the medical, psychological & scientific aspects of RA. Part genuine interest, partly to confirm I’m not alone.
This is where I both thank & curse the tool that is Dr Google. It’s fabulous that so much information is at my fingertips. It’s a nightmare that so much information is at my fingertips! We all learn for ourselves that using Google can be a bad thing, you start out with a hangnail and end up with gangrene in three clicks… 😉
So I have gradually whittled out the sites that are useless, badly sourced, unreliable, trying to sell me snake oil or just plain illiterate. Conversely I have found a staple core of websites that I return to again & again, as I know they are trustworthy, reliable and present information in a clear, understandable way.
I’ll state now for the record these are just sites I’ve personally found very useful, I’m not being bribed to mention any particular site, and none of these are alternatives to consulting a medical professional. Phewww! They are also in no particular order.
- NRAS are a British charity dedicated to providing information and support for everyone, from patients to medical professionals
- Arthritis Research UK are a another British charity who invest in research and providing information for all
- NHS the British National Health Service website covers all things health related, from disease to diet, providing clear and reliable advice
- WebMD offers credible and in-depth medical news, features, reference material, and online community programs
- NIH the National Institutes of Health (NIH), a part of the U.S. Department of Health and Human Services, is the nation’s medical research agency
- EULAR the European League Against Rheumatoid Arthritis is a non profit organ that fosters excellence in education and research in the field of rheumatology
- Rheumatoid Arthritis. Net empowers patients and caregivers to take control of RA by providing a platform to learn, educate and connect with peers and healthcare professionals
- RA Warrior Kelly first created her site/blog in 2009. She believes you are the superhero you need to fight your disease, and provides a wealth of information that’s easy to understand in her blogs
- Mayo Clinic more than 3,300 physicians, scientists and researchers from Mayo Clinic share their expertise to empower you on their incredibly reliable website
- Drugs.com another very reliable site that offers patients clear information about medicines, pros, cons and tips for patients. (My only caveat is don’t use this site or any other over and above your doctors advice – doctors are trained to factor in risks of interactions and side effects, you aren’t)
- Creaky Joints is a wonderful online patient community. More than 100,000 people with all forms of arthritis and their families have been touched by CreakyJoints with meaningful support, updates and education, innovative advocacy and global research projects, and the sharing of great patient blogs from around the world
- Health Central is a kind of health magazine online! It provides easily searchable information and articles about many health issues, shares blogs and invites questions for its experts
- RA – Facebook Groups – I’m not going to provide a link here or name one group because where you find your tribe is personal. I originally searched for and joined a number of groups, and have gradually whittled that down to a few I use all the time. They’ve become family. Some groups will feel right and some won’t, and your right will differ from mine. Join a few, sit back and watch the posts, you’ll soon find where you feel comfortable.
- The Seated View blog by Lene Anderson – my personal RA hero!! No exaggeration. If you only ever buy one book on Rheumatoid Arthritis buy hers, “Your Life with Rheumatoid Arthritis“, it’s my bible. My copy is dog eared and full of notes, and much loved. It even convinced me I was sane on days the world said otherwise. I’ve been fortunate enough to get to get to know Lene as an online friend, she’s brave, witty, clever and frankly amazing, total respect! Plus she likes cats 😊
- Giggles Over Tears with RA is a simply wonderful Facebook page. Donna’s sole aim is to use her poems about RA to make people laugh, a must follow!