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 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
I am so thankful to have found rawarrior.com. Thank you, thank you, thank you. I was diagnosed w/RA in February of 2012.
I’m so glad you found us too. Good luck Jacquelyn.
I don’t know how you stay so put together and beautiful! Thanks for all the hard work you do for us! 🙂
aww, thank you!! But I’m not really. I’m a mess, always looking for a place to sit down, and refusing to keep shoes on… But I think most of us can “not look sick” for a few moments sometimes.
Such a great idea! Thanks for working for us! It’s so hard to get your own health information. My health insurance offered a link that was supposed to provide me with access but guess what? Now when I get blood work done I get notified that there is new information and when I check it tells me that the results are withheld for privacy reasons! My results are private from me! Great! That’s helpful! (Sorry, missing my sarcasm font again.)
yep, this is what this blue button issue is about – having full access to our own information! hello?
Kelly
Your tireless crusading is amazing!!! I feel so renewed and full of hope every time I read RAW! Today, with the blustery weather and the students acting up, my body feels like I did back-to-back marathons. After sneaking a break to look at your blog, I feel like I just received a pain-relieving, energizing shot in the arm!!! Keep on keepin’ on, Kelly!!
aww, thank you!! We are all doing our “marathons” where we are each day! We just keep going, but it’s so nice to feel understood too. Hang in there!
Thank you for all of your hard work for us! I’m not clinical but I have high RA Factor and Anti-CCP, so seeing my Rheumy every 3 months. I am one of the unlucky one’s (25%) that also has Fibromyalgia to deal with. For some reason it showed up first.
Hi Kelly – Thank you for using your limited energy to make a positive impact on so many RADer’s. I so appreciate you for going to DC and fighting for me and all of our warriors. I admire you and cannot thank you enough for the much needed support group. Love and prayers to you.
Kelly, your feet are beautiful. Thank you for your passion and hard work. You are an encourager and an inspiration. I am 30 years into this disease. No more bare feet for me. 🙁
Kelly – sorry for the segue, but I saw the RA awareness card on your site, and looked for it on the RPF site but found it not. Where can I get the PDF so I can make a bazillion of them???? Thanks for EVERYthing!!
LOL. You must have seen them on the newsletter? The first ones are being printed now on business card material so we can send them to RPF members. And YES, we are also putting the pdf up on the http://rheum4us.org site asap so you can print as many as you want. Please check there soon – hopefully within a day or so.
Kelly, Thank you for all you do. It amazes me how determined and ambitious you are! By the way, you are so photogenic-don’t think I’ve ever seen a bad picture of you! I want to say “you look so healthy”, but of course I know better!