Traveling to a WEGO Health Panel for Health Activists
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.
Recommended reading:
- 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
Pingback: Tweets that mention Traveling to a WEGO Health Panel for Health Activists | Don't miss this! | Rheumatoid Arthritis Warrior -- Topsy.com
Kelly I loved your responces to the seminar you attended! Im so happy you stayed will others left. You are so commited to RA awareness! Finally a soft place to fall! Thank you for your work and dedication to ra awareness..judi
Thank you, Judi.
Kelly, I am just so proud of you! And so grateful for your hard work , being such an advocate for all of us. Social media is such an exciting new frontier , and I only hope that the opportunities it provides for patient advocacy, and even more possibilities , is realized by doctors, patients, drug companies, and others.
I am applauding you for the personal steps you were able to take, to enable you to attend the seminars. You defeated RA during that trip, meaning you stepped over it , managed it, and ignored it as much as possible, in order for you to advocate for the RA community. Thank you! You are such a great example of determination, and are an inspiration for all of us.
Thanks for so much good nurse advice & moral support. You are like a rock to me, Julie. We can all do so much more with each other’s support!
Bless your heart Kelly for all the effort it took for you to fly there and represent us. I have so much respect for you, our warrior.
Thanks, Jana. Your long-term support has meant a lot to me too. :heart:
Thank You so much for representing us and being an advocate for RA awareness… <3
Ditto what they all said. Thank you for representing us. I bet it felt real good to put on that makeup and big girls shoes!
haha. Thanks for humoring me on that one, Michael. It did. 😀
There is such a need for RA awareness. I’m glad you are taking this to new levels. Now, if you can get the drug companies to show men in their commercial! Really, I enjoy reading the emails I get and appreciate your hard work. I live in rural Mississippi, and everyone either ‘has’ rheumatoid, ‘you’re not old enoughold enough’ or they don’t know the difference. I have all the same problems you speak of and like many, can’t imagine anyone being worse off than I. This is a horrible disease, and it is a challenge to live life everyday for me.
Hoping for more of the “Good Days”,
WESLEY HUFFSTATLER
You are right Wesley. We do need awareness. Very much so & your idea about men in commercials is brilliant too.
Kelly, I am SO jealous! It is always so awesome to hear about the experiences of those Health Activists who get the opportunity to go to the meet-ups. God bless you girl, I know it took so very much to get yourself there. Would you recommend the experience for other HA’s? Do you think you’ll do it again?
Thats so funny Ellen. I’m sitting here this weekend thinking that going to J& J for 1 day showed me how far away from it all I really am. I’ve never done this before because I think patients are often used as tools by organizations & companies. I was willing to do it because I think I agree with WEGO’s goals & I’m hoping it will help me learn also. So, I’ll do it again on a case by case basis – is it good for our standing as advocates? does it weaken or strengthen it? Very thoughtful questions.
Kelly,
I’m so glad that you did this. It is important to speak up for ourselves and our communities. Congrats on taking so many big steps!!
Lisa
Thank you Lisa. I hate to admit that it was easy & fun. LOL. The meeting part anyway. Shhhh. Don’t tell. Thinking of you with all of your travels this season. I know there are private things involved that must be harder. Take care.
Congrats, Kelly. I’m so proud of you. I received my first ever needed prednisone burst treatment for Ra this week. I am getting a new appreciation for all you warriors and the devastation this disease can possibly have on our lives. More power to you, girl!
Thanks, Angela! 🙂
The Warrior returns!!!! I am so glad that you took that big step onto that plane and flew to new heights. You carried a very heavy pack for all of us and yourself. You did wonderfully and can be proud of all you accomplished. Now to the seminar. What a great opportunity to learn and to teach!!! I can only begin to imagine the feeling of actually being listened to as an equal with knowledge and insight. Rock on Warrior Kelly.
THANKS Jamie! You’re so perceptive. I’m still processing it, but yes, there is something good about people taking you seriously. It’s so rare w/ RA. We need a lot more of it. :yes:
Kelly – I am so thankful that we have someone like you who tirelessly advocates for us and educates others about RA. Your site, more than anything, has been my coping mechanism. I cope by researching and fact-finding, and your blog, much more than the medical websites, has helped me learn the TRUE ins and outs of this disease as they apply to every day life. Thank you and bless you.
Oh, and I want to hear more about your new shoes. I’m forever on a quest to find cute styles that are relatively flat and comfortable.
Thanks, Marie.
Most shoes people say are comfy are still agonizing to me. I say a comfy shoe is one that does NOT touch my foot at all.
I don’t always like Naturalizers, but this time it worked out. I don’t know how cute they are… but they were better than my options. The style: “Gable-black Leather 38527001” The leather is very soft/pliable – like it’s already worn in. Looks like its their new series called “N5 Comfort elements.” This one is a low wedge which I usually don’t like but they are very stable which I needed.
For open shoes that are not thongs, my usual favorite is Bare Traps since it’s like walking on pillows.
I also can sometimes where Clarks. They were my go-to healthy shoe for 20 yrs, but RA has really changed my feet. Still drool over pretty shoes like most girls. 😉
Thanks Kelly! Shoes really are a pain, literally. I love wearing cushy flip flops, but I am in the Northeast, so I can’t wear them year-round. Plus, I work in a corporate office, so they definitely aren’t appropriate for work! Could you imagine flip-flopping into an important meeting??
Lately, I’ve been wearing ballerina flats most of the time. I have a pair of Naturalizer ballet shoes that are great. Also, there is a brand called Me Too that makes great, cushy ballet shoes. Franco Sarto also makes some very comfortable professional shoes at reasonable prices. I used to love Donald J. Pliner shoes (they are a splurge item), but lately their styles haven’t really blown me over.
I know they have no arch support, but I live in Uggs during the winter. I have Raynauds, and the warmth of the sheepskin is comforting. I have Ugg slippers that I wear around the house year-round.
I’ve tried Clarks, but for some reason I don’t get a great fit.
I have a pair of Sanita clogs, but I can’t stand the clunkiness.
The search continues…….
Do you know about Barking Dog Shoes? The lady who runs the website has RA, Kristen. I’ll be you can get ideas there too. She also runs coupons/ sales thru her Facebook group. I find a wedge type shape gives that arch support better than the ballet flats – but its not as pretty as heels. 🙁 Like I said, the only shoes that don’t hurt me at all are the ones that are not touching my feet at all. :O LOL.
In keeping with making our voices heard, I haven’t seen anything about national awareness day. Is this still being promoted for 2014? Do you need any help getting the word out?
Rheumatoid Awareness Day is Feb 2. It would be great if you want to help spread the word. http://rheum4us.org/show-us-how-you-celebrate-awareness/
You can email me kelly AT rawarrior.com