A month of firsts
It has been a month of firsts for me. There were fun things like our first Rheumatoid Arthritis Meme and my first prescription reading glasses – how great it is to see again! There were less fun hard things like medial branch nerve blocks in my back and neck and my first steroid injections in finger joints. There was my first post on WEGO health. And our brand new Twitter hashtag: #rheum. There were several personal firsts related to either my personal healthcare or my work on the blog. Maybe it was like a page was turning.
This week, I traveled for the first time as a professional patient. I’ve always used that term jokingly. It’s just that it’s so much work & time to manage RA – at least the kind that I have. I hope many others have the “easier” kind…
Cleaning silver for the WEGO Health event
WEGO Health invited me to speak on a panel about how we use social media (blogs, Facebook, and Twitter) to talk about RA. I hadn’t flown in a few years – not with full blown Rheumatoid Arthritis. There were several things that had to be done to make it possible.
Can I say something? I remember I used to clean the silver and my husband would say, “You’re doing that because someone’s coming over.” I’d say, “No, I’m doing it because it’s dirty.”
Well, that’s how it is with my RA. The occasion of the WEGO Health opportunity forced me to “clean the silver.” It just means life gives you a reason to take care of things you need to do anyway.
That meant shopping until we finally found closed shoes that I could get my feet into. (Falling-apart sandals were fine for football games in Florida.) It also meant adding prednisone to my usual medications, switching my pain medicine to a pill so I could travel with it easier, getting the finger injections, and arranging a wheelchair for myself in the airports.
Will the guys scoff at this one? On Tuesday morning, I put on makeup for the first time in 14 months! It’s so difficult for my fingers and my neck; it’s not usually worth it. I remember telling my first rheum doc, if you see me coming in with mascara on, you’ll know I’m better. Well, I’m not better, but I decided it was worth the effort to look decent for one day with big-girl shoes on.
What about the WEGO panel?
About the panel: I think the best part was the people. First, I loved meeting the other patient advocates. Casey Quinlan, a breast cancer survivor, wrote Cancer for Christmas and Allison Blass writes the diabetes blog Lemonade Life. There is so much we, as the rheumatology community have to learn from breast cancer and diabetes about how to tell our story. I really wished for more time to spend with them.
Second, there were the WEGO Health folks: Jack, Marie, and Clay. Their whole mission is to amplify the voices of patient advocates. Jack Barrette is the CEO of WEGO Health and his motto is “Healthcare is social media’s higher calling.” They acted like patient voices are important – and I believe they mean it.
Third, there were the executives from Johnson & Johnson. A few of them sat on the edge of their seats, asking questions and taking notes. How cool is that to have someone take notes when you talk, right? A few left early and seemed indifferent. I was glad for some connections which may help create opportunities in the future for our cause.
I’ll let you know what comes of it. I’ll probably buy more silver cleaner just in case.
- The Use It or Lose It Approach to Living with Rheumatoid Arthritis
- Incidence of Rheumatoid Arthritis Increasing, in Women Especially
- Renoir’s Rheumatoid Arthritis
- 10 Essential Facts About Rheumatoid Arthritis No Doctor Ever Told Me