Seamus Mullen and the RA Blogger Summit in NYC
Having friends online is one thing, but getting to meet those friends in person is truly an special event. A couple of weeks ago, I had the pleasure of meeting 7 other RA bloggers at an RA Blogger Summit, hosted by Pfizer, in New York City. It was a special pleasure as three of us are part of the RA HealthCentral community.
Leslie, Cathy, and I were invited to participate in a day of meetings and to enjoy a cooking demonstration by Seamus Mullen, chef and owner of Tertulia, a New York City-based restaurant. Seamus also happens to have rheumatoid arthritis and released his first cookbook last summer - “Hero Food: How Cooking with Delicious Things Can Make Us Feel Better.”
As part of the RA Blogger Summit, participants were able to be first in line to sample a new unbranded campaign which Pfizer is launching tomorrow called RethinkRA. The campaign is not connected with nor promotes any one of Pfizer’s products, which is why it is called an “unbranded campaign.” This educational campaign is designed to help RA patients learn more about the disease and to provide tools for having more productive conversations with their doctors.
The tools offered by Pfizer come in the RethinKit which is free anyone who signs up to receive it. To do so, you do need to register by providing email and mailing addresses. But you may opt-out of receiving any further information from Pfizer or companies acting on their behalf.
As part of the RA Blogger Summit, attendees provided feedback on the campaign, both regarding the website (rethinkra.com) and the RethinKit which we received that morning. There seemed to be several of us who thought that the information provided on the website was very thin and might not inspire us to register for the free Kit.
However, we were impressed with the Kit. The Kit contains three parts: a booklet featuring information about RA and partnering with your doctor for better outcomes, a workbook to help you keep track of RA symptoms and be able to express more clearly how RA is affecting specific aspects of your daily life, and a conversation notepad to help you better prepare for doctor’s appointments.
Note that Pfizer did not ask any of us to write about the meeting nor the campaign. I am doing so just because I honestly think that they’ve created materials that will be highly useful to many RA patients, especially those who have not been able to express their concerns in a more detailed manner with their doctors. The conversations we have in the doctor’s office are brief, but ever so important to fighting back at RA.
Perhaps it is all about expectations. Once we expect to be able to have honest, detailed conversations with our doctors, and once doctors begin to expect patients to clearly express their needs and concerns, the level of care we each receive may begin to improve tremendously.
I am fortunate to have an awesome rheumatologist who takes the time to listen to me and is willing to think outside of the box to address concerns which are unique to my personal circumstances. Our appointments may not be lengthy, but that’s because she’s a fast listener and I’m a “good historian” (as I’ve seen her document in my medical records).
The second part of the RethinkRA campaign is a series of educational events in 10 cities across the country for which Seamus is the spokesperson. RethinkRA has partnered with community hospitals to provide information about RA, with local doctors on hand to answer patient questions. As part of the 10-city tour, Seamus will share his RA story while he prepares some favorite foods and shares tips for simplifying recipes and cooking techniques.
Seamus is quite charismatic and it was fun to watch him in the kitchen on the day of the Blogger Summit. We enjoyed an amazing gluten-free meal at Haven’s Kitchen, prepared by Seamus and his crew, which included cucumber gazpacho, raw kale salad, braized curried chicken with coconut bok choy, ginger rice, and almond cake. Unfortunately, meals will not be provided to attendees of the educational events at the community hospitals.
Here are some of Seamus' Top Ten Tips for Simplifying Tasks in the Kitchen:
- Invest in a good knife. A sharp, high-quality knife takes less energy to use.
- Prevent your cutting board from sliding by placing it on a damp paper towel.
- Invest in a few smart kitchen appliances. A good food processor is your friend.
- Organize your kitchen. Store less-used items in under-counter storage. Keep a small step stool to help reach higher cabinets. Think convenience.
- Keep it cushy. Use well-cushioned mats at the sink and at the counter or stove to help lessen the stress on your feet, legs and back.
- Make things in batches and store extras in the freezer for when you need a shortcut, but still want to eat healthy.
- Blanch (boil briefly) and shock (place in ice water) vegetables to lightly cook them and maximize the nutrients.
It was fun to spend the day with others who truly understand unique challenges of living with RA. Fellow attendees were Britt Johnson (The Hurt Blogger), Angela Lundberg (Inflamed: Living with Rheumatoid Arthritis), Marianna Paulson (A Rheumful of Tips), Shannon Ragland (representing the Rheumatoid Patient Foundation), Dana Symons (at the Water’s Edge), and three HealthCentral RA bloggers, Lisa Emrich (Brass and Ivory: Life with MS & RA), Leslie Rott (Getting Closer to Myself), and Cathy Kramer (The Life and Adventures of Cateepoo).
Full disclosure: Travel, lodging, and meals were provided by Pfizer to attend the RA Blogger Summit. We were not paid additional fees nor asked to discuss Pfizer, the Summit, or the RethinkRA campaign.