Archive for the ‘If you don’t have RA, please read’ Category
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By the Way, I Have RA
I have written about the difficulty of disclosing about RA, especially at events like a Mayo Clinic Center Social Media conference. But we haven’t talked much about the other side: When we explain about RA, do people understand? Not so much. In a recent example, I went through three rounds of explanations about why I [...]
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Can We Find Similarities with Rheumatoid Arthritis?
Very often with Rheumatoid Arthritis, we emphasize our differences. It helps the newly diagnosed to get over the shock of living with a new symptom every day. It helps explain a fickle disease that is quite unreasonable and undemocratic in its attacks. But what about our similarities? Common threads and similarities in Rheumatoid Arthritis As [...]
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Will Venus Williams’ Sjögren’s Syndrome Help RA?
We had an interesting conversation on Facebook yesterday about the Venus Williams’ Sjögren’s syndrome diagnosis (actually 5 of them by day’s end). Some were wondering whether the diagnosis of another famous person with an autoimmune (AI) disease will help bring awareness for RA. Probably not. Why not? Celebrities have been diagnosed with RA (and PsA) [...]
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Response to An Identity Crisis for RA by Dr. R. Franklin Adams
Recently, I read an article in The Rheumatologist (preceding a new PR campaign by the American College of Rheumatology), “An Identity Crisis for RA: A few suggestions to bring rheumatic disease the recognition and respect it deserves.” I strongly recommend that you read the article since I cannot quote it entirely here. It was written [...]
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Evidenced-based Medicine or Easy-bake Oven: Tension Between Evidence and Reality
This post was inspired by the article Patient Advocates: Flies in the Ointment of Evidenced Based Care by Jessie Gruman at Health Affairs Blog. Patient advocacy and evidenced-based medicine are both intimately entwined with several matters in rheumatological care, but first a word about flies. Patient advocates probably are flies in the ointment, and there [...]
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Good News for Us and a Reader’s Take on the Newspaper
We’re so fortunate to have readers who make such amazing contributions. That’s what makes us more of a community than just a website. Isn’t it great the amount of information and encouragement readers provide each other – and me – even by commenting?! This week we reached an extraordinary milestone on our Facebook page. Our [...]
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RA Reality Versus “The Lie”
When everything looks normal but it’s all wrong Countless times I’ve said that I would gladly be wrong about RA. I’d gladly be delusional instead of this sick. I often say “If only I actually were crazy. Then, I could take medication and at least believe I felt better.” Of course it’s a facetious remark, [...]
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The Now-I-Understand Abbott Suit for Rheumatoid Arthritis
What’s the one thing I’ve said more than anything else over the last five years? “No one understands.” I sigh it quietly. I mutter it under my breath. I exclaim it loudly in frustration. I struggle to say it through tears. But I don’t think I’ve ever blogged it. Who doesn’t understand? The professional people [...]
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