Do Not Kiss Me

Do not kiss me because I have a suppressed immune system… In “Kiss My…” a physician blog in Rheumatology News, Dr. Larry Greenbaum wrote, “I charged him level 5 for taking so much of my time, for bad-mouthing his previous doctors, and for incessant whining.” Noontime Monday I clicked into the Facebook (FB) feed for the RA...Continue reading      81 Comments » Read more

Sample Size: 1 of Every 100 RA Patients in U.S. Are Members of Our Facebook Page

Transparent objectives of a patient community As the author of this blog, I’m completely transparent about why I’m here: Stunned at learning what so many RA patients endure, I committed to doing everything possible to change that. The 3 specific goals have been the same for 3.5 years on the About Page, as created during the first...Continue reading      18 Comments » Read more

Mayo Clinic Contest! 5 Ways Patients Can Make a Difference!

1) Rheumatology patients are teaching medical students in Britain! The biggest difference patients can make is to help the medical profession understand their conditions better. Patient instructors in rheumatology are instructing undergraduate and postgraduate medical students are viewed as “an excellent, relatively under-utilised, resource.” “They are especially effective at enhancing students' understanding of the impact of...Continue reading      9 Comments » Read more

Energizing E-patient Engagement – Collaborations that Count

This blog is not about me because it’s always been much more than a way to share my own journey. This blog tells OUR story – the true story of Rheumatoid disease, the people who live with it, the fight to cure it, and the process that patients have entered to participate in improving our...Continue reading      6 Comments » Read more

Tweeting an EMG: Another Way to Research Pain

Really important stuff that I read last week, while researching pain scales, will not be on the blog today. I’ve been thinking a lot about how differently a disease affects us and whether we can honestly communicate about that. When Dana asked for resolutions at the weekly #HCSM (healthcare communications in social media) chat, I said I...Continue reading      24 Comments » Read more

Fears of Social Media: a Pre-Halloween Boogie Man Post

I’m hoping this happy little post might help anyone who is on the fence about blogging or using other forms of internet 2.0 (meaning “interactive websites”) to communicate about healthcare. This article is part of an Advisory Board essay that I contributed to the Mayo Clinic Center for Social media to be used in a...Continue reading      3 Comments » Read more

Positive Signs for Rheum Patient Activism

Seeing is believing: rheum patient activism Last Friday, a meeting of the Emirates Society for Rheumatology (ESR) in Abu Dhabi heard a presentation from Katrina Thornley who has had Juvenile Rheumatoid Arthritis (JRA) for 27 years (since age 2). Dr. Mustafa Al Maini, President of the ESR, comparable to our ACR (American College of Rheumatology), called...Continue reading      4 Comments » Read more

Rheumatoid Arthritis Swelling, Take Two

Rheumatoid Arthritis Swelling (UPDATED 2016) In honor of the blog’s 2nd birthday, let’s consider some issues that have been significant over the last two years. Today we’ll consider Rheumatoid Arthritis swelling. This may be blunt. More like a frying pan than a sword. Talking turkey on Rheumatoid Arthritis swelling A couple of years ago my kind-but-clueless-what-to-do-next (her word)...Continue reading      152 Comments » Read more

Reliable Sources: Orencia Cough Side Effect & Notions of e-Patients

If I cited a percentage of patients who get a cough from Orencia, then I’d quote a source – probably a clinical trial. However, if I merely say, as a patient, that Orencia gave me a cough, then that is a firsthand experience and that’s another type of credible source for other patients. Diabetes blogger Kelly...Continue reading      62 Comments » Read more

Alice Goes to Jacksonville: Mayo Clinic Center for Social Media

What’s the Mayo Clinic Social Media Health Network? I joked a lot about Alice in Wonderland this week as Katie Beth and I traveled to Jacksonville for the first meeting of the Advisory Board for the Mayo Clinic Center for Social Media (MCCSM). It was combined with a conference for members of Mayo Clinic’s new Social...Continue reading      11 Comments » Read more

Three Things Not to Say about Plagiarism to a Blogger

1) Oh, that’s just flattery, they like your writing. 2) Well, at least the message is getting out. 3) Don’t say anything because that will make you look bad. All of these have been said to me. And I’m not buying it. Click image to enlarge. My regular followers know that for I’ve been typing away about Rheumatoid Arthritis on...Continue reading      55 Comments » Read more

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