The “don’t-miss-the-plane” rush is on. My suitcase is half packed. I have a fever and I’m not washing my hair today because my wrist can’t muster it. Yet, I’m going to get on that plane to D.C.! Why all this bother?
I’ve received messages from thousands of precious people telling their stories and how this website...Continue reading 23 Comments »
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Rheumatoid Arthritis Drug Approved by US FDA: Pfizer’s Xeljanz Pill (Tofacitinib)
For over two and a half years, we’ve followed Pfizer’s tofacitinib through clinical trials for FDA approval. Today, the U.S. FDA approved the new drug that will be called Xeljanz. Click here to read the full Pfizer press release for Xeljanz.
The first JAK for Rheumatoid Arthritis approved: “Xeljanz”
The U.S. Food and Drug Administration (FDA) announced...Continue reading 35 Comments »
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Pfizer’s Rheumatoid Arthritis Pill Approved by Food and Drug Administration (FDA)
Note: Click here to read more about Xeljanz, the first new oral medication for Rheumatoid Arthritis in 10 years, and a short list of questions and answers for patients. Sign up for regular blog updates by email to watch for more updates on this new treatment and others.
Pfizer press release about Xeljanz
NEW YORK--(BUSINESS WIRE)--Pfizer...Continue reading 7 Comments »
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Groceries, Guilt, and Feeling Old from Rheumatoid Disease
At our family get-togethers, people tell jokes about how we’ll always be “Young.” I stopped telling those jokes a few years ago. And I think I just figured out why.
Rheumatoid disease makes me feel old.
It’s not the wrinkled brow from unspoken pain. Or the pale spotty skin in place of my former perpetual tan. Or...Continue reading 70 Comments »
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Surgery, Stories, and Feet amid Stubborn Rheumatoid Disease
One thing I wish every day is that everyone in the world could read the priceless emails from other warriors I receive every day. If everyone treating or researching this disease could read them, comprehension of the disease and care for it would improve. Family members could have greater understanding. Employers and friends could begin...Continue reading 33 Comments »
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PCORI – Creating a Culture for Patient-Centered Research
Note! For more snapshots including the posters summarizing the PCORI workshop - click here.
This weekend I attended a PCORI workshop called Transforming Patient-Centered Research: Building Partnerships and Promising Models. I’ve watched some PCORI meetings in the past since they use live stream webcasts to provide transparency. Here are some of my impressions regarding the weekend...Continue reading 11 Comments »
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Invisible Illness Awareness Video
Positively Real: Keeping the Discussion Real without Sugar Coating
Everyone with an “invisible illness” owes such a debt to Lisa Copen, founder of Invisible Illness Awareness Week. She has done so much to provide support to people with “invisible illnesses” like Rheumatoid disease. I don’t know if she coined that term, but she certainly popularized it.
This...Continue reading 6 Comments »
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Red Feet, Frankenstorm, Unexpected Sympathy, and Travel to PCORI Workshop
Tiger and I left home for the PCORI conference today in D.C. in spite of the fact that many in the D.C. are evacuating from the area!
Schools were closed on the Space Coast due to Hurricane Sandy, dubbed #Frankenstorm. In Florida, Sandy wasn’t as big a deal as the half a dozen other hurricanes we’ve...Continue reading 5 Comments »
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New England Compounding Center and Beyond: Medications Warnings and Dangers
When there are warnings of dangers related to medication, there is greater risk to chronic disease patients for two reasons: First, we may be more likely to use the drugs in question. And second, we are more vulnerable because we have a systemic illness. Several news reports over the past few weeks are especially relevant...Continue reading 8 Comments »
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Mascara, Antibodies, and Soup: All I Know about a Disease
I always thought living off fresh smoothies and homemade soup along with regular exercise would keep me strong. And surely working hard and caring for others makes one too busy for chronic illness.
All I know is that I woke up one morning and my toes were pointing out in odd directions because the joints were...Continue reading 39 Comments »
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Win a Pentax Camera! While You Spread RA / RD Awareness!
The PRIZES!
FIRST Prize: Pentax Optio RS1500 Digital Camera
2 SECOND prizes: one of 2 $25 iTunes Gift Cards
The CONTEST! What’s the contest about?
For years, people who live with Rheumatoid Disease (PRD) have suffered because of confusion that RA is just a type of arthritis.
Extremely low research dollars for RA
Need for accommodations in employment situations
Lack of understanding...Continue reading 1 Comment »
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We’re Warriors So Fighting On Is Just What We Do
August. We were exhausted and happy after a successful exhibit at the Rheumatology Nurses Society annual meeting. Five minutes later, I realized I was still buried in Rheumatoid Patient Foundation (RPF) projects preparations for the RPF’s next exhibit at the American College of Rheumatology Scientific Meeting in Washington, D.C. in November.
And, then the hard drive...Continue reading 14 Comments »
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