Monday, August 18, 2014

#LivingARTHfully: Connection and Inspiration


I spent Friday of last week at the Art Gallery of Ontario for the Living ARTHfully Blogger and Online Influencer Event. Canadian bloggers who write about RA, ankylosing spondylitis and psoriasis arthritis came together to make connections, learn tips and information, and brainstorm about increasing online conversations about arthritis. Hosted by GCI Group for Janssen (makers of Remicade and Simponi), it was an inspiring and invigorating day. By the time I went home, I was several new friends richer and buzzing with new ideas. 


Let me introduce you to the other bloggers:

Brian lives in Newfoundland and blogs at Newfoundland Sea Kayaking about arthritis and kayaking among icebergs. For such a calm guy, he’s a bit crazy. You can find him on Twitter at @Newhook79.


Dustin’s from Calgary. Only a few years into his journey with ankylosing spondylitis, he’s already really an important contributor to the online community. You can find him at Journey with AS and @journeyWithAS.


The lovely Julia writes a blog The Old Lady in My Bones from Vancouver and is also a writer, poet and actor. And she cracks me up. Connect with her on twitter at @jgchayco.


Lindsay lives in Winnipeg and has blogged since she was 19 at Run Lindsay Run. That level of accomplishment and poise would be intimidating if she wasn’t such a nice person. You can find her on Twitter at @Lindsaydot.


Marianna and I have known each other online for several years. She’s the author of A Rheumful of Tips and Auntie Stress, as well as a recent addition to the HealthCentral RA writers’ team. Meeting in person was such a treat. Her Twitter handle is @auntiestress.


There were wonderful presentations related to the work we do. One by Dr. Andy Thompson from RheumInfo.com on his exciting experience with growing a website. Dr. Sanjay Dixit gave an engrossing overview of RA, AS and PsA, treatments and the incredible impact of Biologics. Leigh Mitchell from Women in Biz Network got me thinking of new ways to communicate (alas no photo, as she was sitting right next to me).

That was a pretty full morning, so we were all very hungry when we headed for the AGO Frank restaurant. And that’s definitely blogworthy, as well. I’d like to thank the culinary team at Frank for accepting the challenge of creating safe meals for my crapload of food allergies. It was the best meal I’ve had in a very long time!


After lunch, we had a brainstorming session led by Karen from Janssen and Amanda from GCI.



The closing activity had us creating hands made of clay led by the intrepid Carol. Mine was the result of a collaborative effort between myself and my attendant. Let’s just say neither of us will ever be a sculptor.


So, what did I learn? I’m still processing and suspect it’ll take a while for everything to coalesce, but I want to share some of the information and ideas. In no particular order:

Smoking and RA. Quitting smoking is extremely important when you have RA. There is a direct link between smoking and developing RA, as well as between smoking and severity of RA and lessened impact of treatment. However, it seems to be related specifically to the chemicals ingested when you smoke, rather than the nicotine itself. Dr. Dixit explained that you can keep administering nicotine through gum, sprays or patches, as long as you don’t smoke.

Getting better results from your appointments. A bunch of good ideas were generated. If you have a lot of questions and there isn’t time in your appointment with your rheumatologist to get them all answered, Dr. Dixit suggested booking a separate appointment just to talk. To make sure both you and your doctor are on the same page, the brilliant Lindsay had the idea of bringing a list of questions in two copies, one for you and one for your doctor. This will help them understand your priorities. As well, it’s really important that you do not downplay your symptoms. Be honest about how your disease impacts your life so your doctor has a better idea of how your treatment is working.

A new approach to better care. Myself and many others in the community have called for a better team approach to treating RA, including one-stop shopping and a referral to a social worker for resources and counseling at the time of diagnosis. Brian told us of a new program in Newfoundland in which people with inflammatory arthritis are assessed and placed on a waiting list according to need. This means you can potentially get to a rheumatologist much faster. Not only that, but you then spend five days seeing a number of different medical professionals who educate you about your condition. Hopefully, this will spread to the rest of the country.

Access to medication. Did you know that there is a small window early in RA that optimizes your chances for remission? If you are treated early and aggressively, 50% of people with RA go into remission within a year. Mindblowingly, this is the only condition that has this astonishing response to treatment. Heart disease? No. Anything else? No. Biologics are the treatment of choice to increase the chance of remission, but cost makes it impossible for doctors to prescribe it as the first medication.

A trip into the future. Janssen shared some new educational material, including a fold-out card with information that included a video demonstrating e.g., how to do an injection. A video. In a card. Seriously. It blew my mind.

Other topics included communicating with doctors, setting boundaries around your privacy, what medication support programs can do to make your experience easier, and many others.

I’d like to thank GCI and Janssen for this opportunity and the wonderful staff of both companies for making it such a great day. Thanks so much to Karen, Amanda, Anya, Sukait, Kate, and the other lovely people whose names I’ve forgotten. It’s was wonderful to connect with other Canadian bloggers. Let’s do it again next year!
   

Thursday, August 14, 2014

Our Hands Can! Community Stories — July 2014: Holidays/Vacation



Before we show you some of the wonderful entries in the Show Us Your Hands! July Picture Project, we’d like to tell you more about what it is we’re doing. 

It is easy to forget all the amazing things we can do when living with inflammatory arthritis.  Photos are a great way of putting a picture into our mind of all the things we are accomplishing day to day. And that, in a nutshell, is what the Show Us Your Hands! Picture Project is all about! 

Each month we come up with a new theme and ask the community to submit photos of what their hands can do related to the theme. This is one of the ways in which we fulfill our mission of uniting and inspiring the inflammatory arthritis community. But we can’t do it without you. Why not join the Picture Project?

The theme for August is “Food.” Here’s what you do:

1. take a photo of your hands chopping, grilling, cooking, eating. You get the idea. If you’re the parent of a child with JA, why not get your kids involved, as well?
3. Tag your post with #showusyourhands.

And that’s all! Submit as many photos as you’d like. At the end of the month, our Advisory Council will choose their favorite. The August prize is a copy of Kim P. Miller’s Living with Juvenile Arthritis: A Parent’s Guide. Thanks so much to Kim for the donation! We also should let you know that by submitting a photo, you give Show Us Your Hands! permission to use the photo and your name in our community programs, such as the monthly Our Hands Can! Community Stories.

July’s theme was Holidays/Vacation and we got some amazing entries. Here is a small selection:

Rebecca went to Disney and says she “made it through and had a blast!” It sure looks like both you and the little one on having a good time!

 

Karen posted this photo, saying “Not exactly "vacation", since the only reason I'm home is because I was let go from my job in April. But I've been using the time to create some jewelry.” We love that you’re making something beautiful out of a difficult time, Karen!

 

Sheri shared this shot, telling us that she is “spreading the word about Scleroderma awareness in Blarney, Ireland!” Way to go, Sheri!

 

Congratulations, Sheri, you’re the winner of the July Picture Project! You’ll get an e-book copy of Lene Andersen’s 7 Facets: A Meditation on Pain. Check your inbox for a message from us with details on how to claim your prize. 

To see the other entries in our Picture Project, hop on over to the Show Us Your Hands! Facebook page. While you’re there, why not submit a photo yourself?


   

Wednesday, August 13, 2014

Dawn is Running for Kids with Juvenile Arthritis



Only days ago, I mentioned how anything to do with juvenile arthritis is very near to my heart. And then the universe provided me with the opportunity to talk to an exceptional woman who is doing something beautiful to help fund research for kids with arthritis at Toronto’s Hospital for Sick Children

I’d like you to meet Dawn Richards.


This Saturday, she is running 30 km in A Midsummer’s Run for Kids. She’s doing it because having lived with rheumatoid arthritis (RA) for the last eight years, she knows “how hard it is as an adult. I can’t imagine what it’s like for a little one who can’t articulate where it hurts.”

Diagnosed eight years ago at age 32, Dawn says “I probably had symptoms a year and a half before that.” She received aggressive treatment from an excellent rheumatologist. “Two years into treatment, my rheumatologist told me he considers me in remission. I’m very lucky and that’s why I became an advocate for all things arthritis.” Even though she is in remission, “fatigue is still a huge part of my life,” Dawn says. As well, her hands and feet still get sore at times, although she doesn’t have any swelling or inflammation.

Dawn says “I was a runner before I was diagnosed.” She continued exercising after diagnosis. “I believe that exercise helps us more than it hurts us.” In particular, she enjoys long-distance running. “I did one marathon before my diagnosis and ran the Chicago Marathon three years ago. At 42 km, it’s too much for me. I can do 30 km. It’s painful, but I can handle it.”

After her diagnosis, Dawn looked for a long-distance run in Toronto that benefited arthritis. She discovered A Midsummer’s Nights Run for Kids, which benefits the Department of Rheumatology at The Hospital for Sick Children (for the non-Torontonians among you, a.k.a. Sick Kids). 

This will be Dawn’s 8th year doing the run and I asked her why it’s so special. “It’s organized by volunteers. This means that all the money raised go to supporting pediatric arthritis research at Sick Kids.” That is indeed pretty special!

Although she “hates to pressure people,” the whole point of this post is to encourage you to sponsorDawn, so I asked her what message she’d like to share with you.

“I do this because it’s really important,” she said. “Arthritis can affect anyone.” She also asked me to emphasize again that should you decide to sponsor her, every cent goes to supporting pediatric arthritis research.

Thanks for doing this, Dawn! You’re running not just for kids with JA, but for people like me who also live with RA, but can’t run.

 
If you’d like to sponsor Dawn, you can do it on her participant page.