Well, the ACR conference [held in San Diego] is over for this year!
Spent most of today in a haze. Just now coming “out” of it – for today! And it’s almost 6pm! Flights to and from were horrible – like being trapped in a sardine or anchovy can for 4 1/2 hours. Each way. Bumpy.
Thinking back over the conference, it was wonderful to meet-and-greet some of the members of the Rheumatoid Patient Foundation in person! This group of people is amazing! They just get up in the morning regardless of pain, stiffness and medication side effects. They just get on with their day and tasks. I was appalled at the callousness of entirely too many of the rheumatologists attending the conference that I saw and heard about. These are supposed to be experts in their field, but so many display appalling lack of knowledge and lack of caring! Makes me thankful for my own, very good, caring rheumatologist and internist and orthopedic surgeon, and dentist, etc. Please don’t think I am “bashing” the rheumatology profession! I’m not! But in every basket of apples there will be a few rotten ones.
The problem, for me, is that over 2 million people in the USA alone have rheumatoid disease. It is a VILE and horrifying disease! It cripples, causes heart and lung problems, takes away the very things that are dear to us: picking up and holding a baby or young child, singing (inflammation of the crico-arytenoid joints in the voicebox), vision (uveitis), hearing (arthritis of the three ossicles [malleus, incus and stapes] of the inner ear), mobility (severe arthritis of the hands, feet, ankles, wrists, knees, elbows, hips, shoulders), ability to breathe easily (inflammation of the joints of the ribs and sternum [breastbone] in the front, and the ribs and backbone in the back). Rheumatoid disease causes increased risk of early death from cardiac problems (inflammation of the covering of the heart, inflammation of the coronary arteries). Bone-marrow-deep fatigue is a major component of this disease, and can wreak havoc with work activity. It’s more than just being tired. It’s a fall-over-if-you-don’t-lie-down-right-now kind of fatigue. With rheumatoid disease, your life is changed forever. And it just makes it harder when the docs that are supposed to know about and treat this disease don’t believe us when we give them our history, don’t listen when we tell them about pain, only rely on inaccurate tests for treatment decisions, and don’t even seem to know how to examine a “rheumatoid joint!”
Kelly‘s talk was really good. She has data from over 1400 patients demonstrating dramatic differences in the initial presentation and the ongoing course of rheumatoid disease than those shown in the CURRENT textbooks. Additional data from over 2100 patients may reflect a higher health-related quality-of-life score than patients actually experience due to lifestyle adaptations, the failure of the HAQ [Health Assessment Questionnaire] to detect consequences of physical activity such as a recovery period, and the failure of the HAQ to consider essential context of activities in real life.
Just another demonstration that journal articles are usually about 5 years out of date when published, and textbooks are over 10 years out of date when published. Frequently, textbook revisions do not correct important out of date information.
My talk went off fairly well. I was compressed for time, and had to skip some points I thought were important. I’m going to put a bit of a synopsis and a few of the slides I used here in the next week or so.
Himself was an absolute God-send! He guarded my energy levels, monitored my pain levels, made sure I ate (kind of) regularly, and generally supported me in all ways. In his spare time, he flirted outrageously with the gals and talked earnestly with the guys at the Rheumatoid Patient Foundation booth! Brace yourselves, Himself might give a talk next year at the conference about caregivers and caregiving for patients with rheumatoid disease. That means both of us might be going to Boston! Well, at least there’s good seafood up there, too. Always a plus!