Do Not Kiss Me

December 5, 2012May 14, 2018 Kelly Young 81 Comments Health care social media, Physician-patient discordance / disagreement, Talking to doctors

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

August 17, 2012May 14, 2018 Kelly Young 18 Comments e-patient, Health care social media, Patient advocacy, Rheumatoid Patient Foundation

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!

July 6, 2012May 14, 2018 Kelly Young 9 Comments Health care social media, Rheumatoid Patient Foundation

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

June 26, 2012May 14, 2018 Kelly Young 6 Comments e-patient, Health care social media, Patient advocacy

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

January 11, 2012May 15, 2018 Kelly Young 24 Comments Health care social media, Living with chronic illness like RA, Pain Tolerance / RA Stoicism

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

October 19, 2011May 15, 2018 Kelly Young 3 Comments Health care social media, Humor with RA

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

May 26, 2011May 15, 2018 Kelly Young 4 Comments e-patient, Health care social media, Patient advocacy, Rheumatoid Patient Foundation

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

May 23, 2011May 15, 2018 Kelly Young 152 Comments Frying Pan Posts, Health care social media, Rheumatoid arthritis remission

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

March 22, 2011May 15, 2018 Kelly Young 62 Comments Biologics for RA, e-patient, Health care social media, Orencia (abatacept), Side effects for RA medicine

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

March 17, 2011May 15, 2018 Kelly Young 11 Comments e-patient, Health care social media, Pain Tolerance / RA Stoicism, Patient advocacy

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

Health.com Replies to RA Warrior

March 10, 2011May 15, 2018 Kelly Young 31 Comments Health care social media, Patient advocacy, Professional patient

An editor at Health.com sent this message to me and my readers as a response to my post Three Things Not to Say about Plagiarism to a Blogger. She did not claim to speak for the writer. Please see my response below. I’m the Health.com editor who worked on this story, and I just got off...Continue reading 31 Comments » Read more

Three Things Not to Say about Plagiarism to a Blogger

March 4, 2011May 15, 2018 Kelly Young 55 Comments e-patient, Health care social media, Patient advocacy

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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