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Juggling Life and a Chronic Disease Like Rheumatoid


Usually when someone hears I have five children, they ask, “How?!” My answer is always the same: “One at a time.” They span about 15 years – it’s not like there were five toddlers at once. Actually, there was never more than one in diapers at a time – so my mom had it much […]

Hints of an Immunity Fingerprint: Bee Stings, Peanuts, and Colds


What if each immune system is unique, so none respond exactly the same? Almost two years ago I told you about a phrase I’d coined, the immune fingerprint, to describe the unique way each person’s immune system responds to a similar or identical stimulus. I hope you’ll read that original post explaining it’s only logical […]

20 Essential Medication Safety Tips

medicine combination lockbox

Chronic disease patients are at greater risk for adverse drug events For those living with a chronic disease, safe medication storage and use is more than following directions on an occasional antibiotic or treatment for an acute illness. Both the types of medications and the number of different medications present safety challenges and put people […]

Together, We’re Neither Alone Nor Powerless


Friendship is born at that moment when one person says to another: “What? You too? I thought I was the only one.” ~CS Lewis    Most of the time, it seems we’re pretty powerless to change things. As long as we’re alone, it might stay that way. But when we find others like us, the […]

Five Keys to a Thankful Heart

Sunset from WalMart

There are always obstacles to thankfulness, and living with a painful chronic disease is certainly an obvious one. This week confronted once again things I’m no longer able to do for a holiday, I reflected on the subject of thankfulness and things much more important than color-coordinated napkins and a lovely front door wreath. Tomorrow […]

Remaining Pain with Rheumatoid Arthritis Treatment


Since 2009, RAW has discussed how people manage the common occurrence of “leftover” symptoms such pain, fatigue, and stiffness while being treated for Rheumatoid Arthritis. Leftover or remaining pain is the subject of an interesting abstract reported at the recent American College of Rheumatology scientific meeting.[1] New look at old problem: “Remaining Pain Is Common […]

Medscape Symposium Reveals Attitudes #Rheum Patients Encounter

Medscape RA symposium advertisement ACR13

Recently, we looked at a new report showing machines used to perform musculoskeletal ultrasound (MSUS) vary considerably in ability to detect inflammation, and warning about the use of MSUS in treatment decisions when the machines are not yet accuracy rated. We know that Patient reported outcome measures (PROMs) predict prognosis in Rheumatoid Disease (RD), but […]

What a Wonderful World, and Nobody Knows the Trouble I’ve Seen

Be kinder than necessary for everyone you meet is fighting some kind of battle

Do these two song titles seem to conflict? The former was one of the first songs I ever put (and kept) on my phone. The latter I learned in second grade because my teacher thought every American must know Spirituals. (Hear Louis Armstrong sing below, and Nobody Knows the Trouble I’ve Seen on YouTube.) Guys, cover […]

Could Ultrasound Prevent Rheumatology Patients from Receiving Disease Treatments?

Power Doppler study poster by Erasmus MC ACR13

This is the 10th in a series on musculoskeletal ultrasound use in people living with Rheumatoid Disease (PRD). This is a critical topic for PRD that could have enormous impact on clinical care – positively or negatively – in light of results from two recent studies. Musculoskeletal ultrasound can help “see” invisible disease activity Musculoskeletal […]

25 Tips to Stay Well in Cold and Flu Season

Emergen-C Tangerine flavor

This post is a response to questions about how to navigate cold and flu season with Rheumatoid Disease (RD). Flu shots are now center stage at grocery stores and pharmacies across the US. According to the CDC (Centers for Disease Control and Prevention), flu season can begin as early as October. There’s plenty of advice […]

PCORI, Is It Worth It to Include Patients?

Patients Included logo

The patients who read this blog are like dear brothers and sisters to me. I’ve met many in person and it’s like a family reunion. The RAW website and blog obviously speak to others as well – lay and professional caregivers, rheumatology industry, and sometimes the larger patient engagement movement. We’re working hard for change […]

10 Misconceptions About Chronic Disease Many People Believe


You can’t understand illness by just looking at a person Very soon after being diagnosed with RA, I learned that most people have beliefs about chronic illness that are hard to overcome. When one neighbor, friend, and family member after another dismissed me, I did the same thing most people with Rheumatoid Disease (PRD) do: […]