We’re Warriors So Fighting On Is Just What We Do

• Blue Button meeting at HHS (ONC)

  The iPad looking back from the front of the crowded meeting room.

• #HealthIT4u at ONC

  @Farzad & @Lygeia (in Walking Gallery jacket) at Blue Button meeting.

• Kelly and Tiffany

  Getting a hug from the extraordinary @TiffanyandLupus after a long day at HHS.

• U.S. Capitol

  The United States Capitol

• Meeting a friend

  Meeting a friend and fellow warrior at the FDA building.

• Cannon House Office Building

  A doormat at the Cannon HOB!

• Congresswoman Caster s office

  Talking with Kathy Caster s staff about how many women are affected by RA.

• Congressman Stearns office

  Talking with Tom Power about how to best help RA patients in DC.

• View of U.S. Capitol a congressman\'s window

  They describe the view as their main office perk.

• Congressman Murphy s office

  Talking about next steps for RPF on the Hill.

• Kelly at U.S. Capitol

  Relaxing as joggers run past the capitol at the end of a long day.

• Georgetown sunset

  View of Georgetown sunset from Key Bridge.

• Kelly @ Jefferson Memorial w/ Chris

  This picture was emailed from China!

• Kelly @ Jefferson Memorial on 9/11

  Making phone calls at the Jefferson Memorial. So typical of me & Leslie secretly shot me w/ the iPad.

• Barefoot

  Typical me. Sitting. Shoes off.

• Feet

  RA feet hate shoes.

• Washington Monument reflection

  Reflection of the Washington Monument in the Tidal Basin on 9/11.

• At Lincoln Memorial

  See the sun going down behind the monument. Awesome.

• Kelly & Leslie @ Lincoln Memorial

  We visited Mr. Lincoln for a couple hours, mostly sitting & resting.

• We\'re here!

  We paused frequently to take notes & take pictures!

• Congressman Burgess office.

  Congressional offices are often small so meetings can take place in hallways!

• By U.S. Capitol

  Outside house office buildings (HOB).

• Kelly by Cannon HOB

  Leslie enforced rest frequently.

• Kelly s feet at Congress

  RA feet were not embarrassed to rest.

• Congressman Posey s office

  Talking about how Rheumatoid disease affects so many Americans.

• Congressman Posey s office

  Kelly and Christen talking about the Rheumatoid Patient Foundation (RPF).

• Congressman Bill Posey

  Christen, Leslie, Bill Posey, and Kelly

• Christen and Kelly

  Talking with Christen about RA and RPF.

• Beautiful lamp post.

  Part of my growing lamp post photo collection.

• Kelly & Leslie @ U.S. Capitol

  So grateful for dear ones who help me be able to do things like this.

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 crash. And the failed restore. And weeks of spending all day trying to get back every email, video, and PowerPoint presentation.

Decision. Continue with plans to D.C. for a week? I decided yes.

Of course, I had no idea it would be SIX WEEKS before I would be able to get any work done. Still… no regrets!

In D. C. The pictures tell much of the story. Enjoy the slide show! And here are two important highlights of our week:

Blue Button summit

The Blue Button method for patients to access their health records was first used with veterans. (See Blue Button video testimonials.) And recently others in the health care industry have signed on such as United Health Care and Walgreen’s. The purpose of the September summit was to explore ways to expand consumer access to health information. We had a wonderful day full of opportunities to learn and share with people who care.

I found a portion of the of the Blue Button Summit on video here. “Dr. Farzad Mostashari, National Coordinator for Health IT, ONC, and Lygeia Ricciardi, Acting Director, Office of Consumer eHealth, Office of the National Coordinator for Health Information Technology, HHS.”

Capitol Hill

Since we were going to D.C. already, we had set up meetings with several Congressional offices to share about the concerns of people with Rheumatoid Disease. They appreciated our message and agreed that there is much work to be done on behalf of RA patients. It was a great start for RPF thanks to some people who were also very generous with their time and advice for the RPF.

Back so soon?

Yes! My son and I will be attending a PCORI meeting next weekend in D.C. I know I’ll be sitting for literally 90% of the time, but it will still be tough to travel with such a quick turnaround. Obviously, I think this is very important. I’m only participating where I believe I can make a difference.

Note: a photo gallery is one of the things I’ve wanted to add to the site for years. This week I’ve created a more few albums, so look for GALLERY on the top menu any day now!

Recommended reading

• What If Rheumatoid Disease Were Recognized, Properly Funded & Medically Understood?
• My Impressions About the FDA Hearings on Social Media #FDASM
• 20 Tips for Managing Your Rheumatoid Arthritis Treatment

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