Birth of a rheumatoid arthritis blog
This month the RA Warrior website—and blog—began its 12th year. In 2008, I dreamed of building a rheumatoid arthritis blog and website to bring better answers to people with RA that I’d already begun to know and love—and many thousands I was yet to meet. On May 17, 2009, I sat on a lawn chair next to 4-year old Roo on his swing and just started the blog. There were months of notes and lists and research… but I just typed a short blog post from my heart about how it felt sitting there with RA—unable to swing or build the rheumatoid arthritis blog that I dreamed of. (Here’s a link to that first RA blog post.)
Mission of the rheumatoid arthritis blog
The mission from day one: information and encouragement to fight RA! The RA Warrior website and blog focus on fighting back against rheumatoid disease and staying positive, but to do that we need to have the facts! Back then, medical websites almost never acknowledged extra-articular aspects of the disease or that treatments didn’t work well for a large percent of patients. What I learned from patients—whom I always believed—wasn’t reflected in most medical articles. And what I learned from medical journals hadn’t been collected and put together so that people—especially patients and doctors—could see the whole picture.
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- 10 Things I Wish I Knew 10 Years Ago About Rheumatoid Arthritis
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Achievements of a rheumatoid arthritis blog—and team
That first year was full of long nights building new things on RAW or fixing the website after it crashed; most of which was done together with my daughter KB! There were the first few hundred fans on Facebook whose love only increased my courage. The front page of AOL! John who helped us connect with the ACR. After that, friends stood with me to found the Rheumatoid Patient Foundation (RPF) to advance the cause: improving the lives of people with rheumatoid disease. Dana Symons—the talented woman who served as VP at RPF for countless hours alongside of me (and even when I could not).
Challenges for a rheumatoid arthritis blog
Accomplishments only come because you meet challenges. One of the toughest challenges for people with rheumatoid disease is rampant misinformation about the disease. We’ve seen clear improvement in response to our advocacy. Many websites that claimed RA /RD is merely a “type of arthritis” have gradually updated their content to include some acknowledgement of extra-articular symptoms. But we must press on. Just last week I was looking at articles about ulnar deviation (since mine is getting more severe) and I was dismayed to see how a well-respected medical website treated lupus so differently from RA / RD. This article is an example of how poorly RA is handled. From Causes to Treatments to inaccurate images—I could do much better on my humble RA blog (and I probably will).
We’ve also contributed to progress in the roles of patient advocates. Advocates are more likely to be actually hired to help with a project and less likely to receive Dear Blogger letters asking us to do someone else’s job for them for free or just have our content stolen outright—but it still happens.Now, in its 12th year, the RA Warrior Website still kicking butt and taking names (WWII idiom). Click To Tweet
7 Things you may be surprised to know about this RA blog & website
- I met almost all of my best friends thru RAW—how about you?
- I did not support working to change the name of RA (read why!)
- My book, RA Unmasked was written after I read thousands of medical journal articles.
- To answer questions people ask me, I use the RAW search box daily!
- While they were kids, all five of mine were only known on RAW by their nicknames e.g.: Roo, Tiger, Bear…
- The incredible dropdown Tags List is still the fastest way to read what you need on RAW.
- In 7th grade, my science teacher gave me a C on a paper because he didn’t believe I could’ve written it. Some silly people think the same thing about RAW.
Happy Rheumatoid Arthritis Blog Birthday! KB calls it RA Warrior Day.
In some ways, this blogaversary feels more significant than my real birthday.
WHAT ABOUT YOU? HOW HAVE RA BLOGS—OR THIS ONE—MADE A DIFFERENCE?
- 2009 Rheumatoid Arthritis can make you patient
- 2010 History of Rheumatoid Arthritis Warrior Blog
- 2011 Elephant Jokes for a Happy Two Year Birthday RA Warrior
- 2012 Beginning Our 4th Year! 5 Stunning Things I Learned & My Forecast for the Future
- 2013 Happy Birthday RAW! The Day I Could No Longer Stay Silent
- 2019 Best RA Blog Birthday Gift