Tuesday, October 18, 2011


Did you know that Renoir apparently had the first well-documented case of RA in history? Apparently, though he suffered from severe joint deformation in his hands in his later years, he continued to paint by tying his paintbrush to his hand. Now that's determination for you!!

I learned about Renoir from an interesting article sent to me by my friend JG: 11 Famous People With Rheumatoid Arthritis. Though I have to admit that I have not heard of all of these people  (and they are saying Lucille Ball may not have actually had RA) it is interesting to see the various accomplishments of people who have dealt with RA: artists, movie stars, Oscar winners, singers, heart surgeons...even a Nobel Peace Prize winner! They clearly didn't let their RA stop them - and neither should you!

UPDATE: My blog also publishes automatically to my page on the Arthritis Foundation RA Community. One of my readers there passed along this link, which is a film of Renior painting in his later years. In the film you can see how RA has severely disfigured his hands, but he still continued to paint up until the day he died. It is a little bit disturbing to see his disfigured hands, but you have to remember that in the late 1800s there were no meds at all to manage RA. And it is amazing to see him persevere despite the RA.

(Heard of any other good RA Factoids? Send them my way and I will post them!!)

Thursday, October 13, 2011

Healing Hands for Arthritis

Yesterday, I got a massage in support of the Arthritis Foundation. Best fundraiser ever! What a relaxing way to donate money to a good cause! We're still waiting to hear from the national office about exactly how much money was raised yesterday, but hopefully it was a really successful event.

At the request of my local Arthritis Foundation office, I arrived at my local Massage Envy a few hours early to thank the owners and talk to customers about how they were helping to raise funds for arthritis. The owner was really friendly and said he thought the event was going well. He took a few minutes to talk to me about arthritis, and I think he even learned a few things from speaking with me. For example, he seemed surprised to hear that kids get arthritis too! I'm really glad that I got a chance to speak with him, because I think our sponsors should definitely know what they are sponsoring!

When it came to talking to people waiting to get their massages, I have to admit that it turned out to be a lot more difficult than I expected it to be. For one thing, most people seemed to be in a personal relaxation zone, and I didn't want to be too annoying while they were trying to relax. But also, though I know the message of arthritis awareness well enough, this was the first time I had ever delivered it in person to complete (and possibly uninterested) strangers, and it turned out to be a little bit outside my comfort zone. But I challenged myself and pushed forward. And thankfully the Arthritis Foundation gave me some jar openers to hand out, which made it much easier to approach people!

Ultimately, most of the people I talked to yesterday had no idea that their massages would be benefiting the Arthritis Foundation - they were just there yesterday by coincidence. But everyone seemed pleased to hear about the fundraiser when I explained it, and one of the girls at the front desk assured me that some people had mentioned the fundraiser when booking their massages for yesterday. Most people accepted the jar opener I offered them, but didn't talk to me any further.

However, I did have about 5 or 6 good conversations yesterday. A few people either had arthritis themselves or knew someone who did, so they were especially pleased to hear about the fundraiser. But I think my favorite conversations turned out to be with people who didn't know anything about arthritis but were interested in finding out - including one guy who flat out told me that I was far too young to have arthritis. Since these folks were interested, it was actually fun to talk to them about the different kinds of arthritis and what the Arthritis Foundation does to help. I found myself talking so comfortably about my own RA to complete strangers that I surprised myself. 

It was only a couple of hours chatting with people in a waiting room, but I'm quite proud of myself for the work I did yesterday. For one thing, there are now at least a couple more people in the world who understand that there are many forms of "arthritis" - and that kids and young adults can get arthritis too. I'm also proud of myself for taking a deep breath and stepping outside of my comfort zone to do something positive - it wasn't easy to take the first step, but I have to admit that it did get easier after that. 

I'm glad to have made at least a little bit of difference on World Arthritis Day - because every little bit helps.

Wednesday, October 12, 2011

Today Is World Arthritis Day

Today is World Arthritis Day!!

Please make it your goal to teach someone about arthritis today! Post about it in your Facebook status, email your friends, talk to your co-workers, mention it over dinner, tell the barista at Starbucks! Help spread awareness that arthritis affects 1 in 5 adults and 300,000 children. And that "arthritis" is more than just osteoarthritis.


Tuesday, October 11, 2011

Another Fun Fact

Here's another fun fact! The Arthritis Foundation has just received conformation that they will get to ring the bell at the New York Stock Exchange to raise awareness for arthritis! For some reason, they are doing it the day after World Arthritis Day - on Thursday, October 13 - but it's still pretty cool. Way to go with the arthritis awareness New York!

Monday, October 10, 2011

Fun Fact

Here's a fun fact! The Empire State Building will be lit up blue on Wednesday to honor the Arthritis Foundation and World Arthritis Day!

Secretary Sebelius Celebrates World Arthritis Day

This morning on Facebook I saw a post from the Arthritis Foundation in my newsfeed announcing that Secretary of Health & Human Services Kathleen Sebelius had prepared a message in honor of World Arthritis Day - which is this coming Wednesday, October 12th. It's very exciting to think that maybe the letter writing campaign actually made a difference in getting her to think and speak about arthritis!!

However, I have to admit that I have mixed feelings about her message. Before I launch into them, perhaps you'd like to watch the video for yourself:

On the one hand, I am really, really happy to see arthritis getting attention at such a high level of federal government. If Secretary Sebelius speaks about arthritis, hopefully that means there is a chance President Obama will hear our concerns as well. And I truly believe that increasing awareness about arthritis is a necessary step in achieving funding for much-needed research as well as increasing understanding and awareness for people (and children) suffering from arthritis. 

I understand that Secretary Sebelius has very limited time and that she deals with a massive number of health issues, so I am very grateful that she took the time to focus on arthritis. I also understand that awareness campaigns have limited resources and may, in fact, be more successful if you are able narrow the focus of the campaign. 

However, as someone personally suffering from RA, an auto-immune version of arthritis, and as someone who works with JA kids, who also have auto-immune versions of arthritis, I find I am still struggling with the fact that "Arthritis Awareness" tends to focus only on OA.

I have said it before on this blog and I will say it again: I am not trying to downplay the seriousness of OA in any way. It is a very serious issue in this country and dealing with OA is completely necessary for overcoming a myriad of other health issues. OA affects 1 in 5 U.S. adults, a HUGE number of people, so I understand that it also has a greater likelihood of gaining much-needed grassroots support.

But there are a couple of reasons that it frustrates me when the word "arthritis" is used by someone who is really only talking about osteoarthritis. One is that if people associate the word "arthritis" only with osteoarthritis, it may increase awareness of OA but it seems to me this confusion decreases awareness about other forms of arthritis. And, especially for those of us dealing with arthritis at a young age, it can be particularly difficult to cope when people think of "arthritis" only as OA. This type of confusion about what the word "arthritis" really means is what leads people to say "but you're too young to have arthritis!" or "Oh, my grandmother has it too."

Secretary Sebelius' video focuses only on osteoarthritis, but she doesn't even use that word until almost halfway through. Prior to specifying that she is talking about OA, she uses the word "arthritis" in a confusing way when she says "the good news is that arthritis is not inevitable nor untreatable." But I'm not convinced that sentence is accurate for people (or children) dealing with auto-immune versions of arthritis. Yes, auto-immune arthritis can be "treated," but are the treatments really good enough to allow us to live our lives the way we want to? Good enough to qualify as "good news"? Or do we still need research into better treatments? And, perhaps more importantly, I personally feel that my RA was, in fact, inevitable. It's not my fault that I got arthritis and there wasn't anything I could have done to stop myself from getting it. And I'm sure parents of kids with arthritis would agree.

Though Secretary Sebelius does say that osteoarthritis is "the most common type of arthritis," which perhaps indicates that other types of arthritis do exist, she does not even make mention of any of the other types of arthritis. I realize that her time is limited, but what about the 1.3 million Americans with RA who account for nearly 1% of the nation's adult population? And what about the 300,000 children with arthritis? And what about all the Americans affected by the other 100+ forms of arthritis? Don't they deserve a mention when talking about World Arthritis Day? I think we do.