Posts Tagged ‘Comprehensive RA Care’
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Happy Birthday RAW! The Day I Could No Longer Stay Silent
This week the British Medical Journal published my article which they titled: Doctors’ understanding of rheumatoid disease does not align with patients’ experiences. But first, today is a very special day. Today begins year five of RAW Four years ago today, RA Warrior was born. I’d been studying, writing, and talking to patients for a [...]
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Where the Rubber Meets the Road or What If Only the Cancer in Dave’s Kidneys Was Treated?
Measuring disease activity: where rubber meets the road Recently a rheumatologist friend told me of needing to prove ACR20 (a measure of 20 percent improvement) in order for a patient to continue receiving a biologic treatment. I don’t know whether it was private or government insurance, but something bothered me about it. Of course, 20 [...]
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Why Rheumatoid Disease Patients Still Fall through the Cracks
“Well, at least it’s nothing serious.” How many rheumatoid patients have heard that, some even from doctors? Last week, after Danita’s story, I wanted to share with you this letter to the editor of Musculoskeletal Network, but health issues and life and a board meeting delayed me. The letter below is my response to the [...]
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Does Each Joint Count with Rheumatoid Arthritis?
In the morning, I’m going to see the pain doc again about my neck, the one who took the place of Sir Topham Head when he moved away. They claim to only treat back pain, but that might be a good thing. When I was first diagnosed with RA, I met a woman at my [...]
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The 10 Fundamentals of Care for Rheumatoid Patients
Click here to download the printable PDF version of this important statement. What would appropriate rheumatological care for RA patients look like? The ACR tells us that the majority of Rheumatoid patients do not receive treatment that follows their recommendations. What are some specific requirements for good rheumatology care for RA patients? “Although the outcome [...]
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Beginning Our 4th Year! 5 Stunning Things I Learned & My Forecast for the Future
Three years ago today, I typed my first blog post in my back yard on a whim. My daughter had started to blog – what’s to worry about – just do it! Before that, I’d been working on ideas for months. I did have a goal: to build a website where RA patients could find [...]
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Significant Numbers of RA Patients Don’t Receive Recommended Care
Understanding the reality of the disease is only half the battle We are making progress. Although there’s still a long way to go, patients are playing a part of advancements toward more complete understanding of Rheumatoid Arthritis as a disease. We might suppose that once RA is more widely understood to be a systemic disease, [...]
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Secondary Sjogren’s Syndrome and Rheumatoid Arthritis: a Primary Problem
Sjogren’s syndrome: have you seen the eye doc yet? When I wrote my first RA Warrior post on Sjogren’s syndrome in 2009, I wasn’t sure whether I’d ever be diagnosed with it. But I thought it was important to cover on the blog. I had a fun idea for illustrating the pronunciation of the name [...]
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5 Reasons Rheumatoid Disease Is a Better Term than Rheumatoid Arthritis
The first blog post of this year told how I’ve come to prefer the term Rheumatoid Disease to Rheumatoid Arthritis. The response? Within 2 days in Facebook-land, there were 294 Shares, 583 Likes, and 128 comments. There are now 1,000 Likes, 500 re-Tweets, and 80 blog comments. That’s people voting with their mouse: Yes. But [...]
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What about a Clinical Protocol for Rheumatoid Arthritis Disease?
This was written in October 2011 as the fourth in the Frying Pan Post series. As most of you know, I’ve been crazy-busy since then, leaving many things on hold. These posts examine crucial ideas that have surfaced over the last couple of years on the blog. The Frying Pan Posts challenge the status quo [...]
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Preclinical Rheumatoid Disease: There Are No Joints in the Lungs
My mom used to read to me John Godfrey Saxe’s 19th century version of a famous Indian legend, The Blind Men and the Elephant. I’m certain it contributed to my zealous love of evidence. Over the last couple of years, interacting with thousands of people with Rheumatoid disease, I came to the conclusion that only [...]
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Can We Treat the Whole Person or at Least the Whole Disease?
It’s like watching The Terminal. RA is a Twilight Zone No-Man’s-Land disease. “Mr. Navorski, you cannot get into New York without a visa. You cannot get a visa without a passport, and you cannot get a new passport without a country. There’s nothing we can do for you here.” I got a letter today about [...]
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