#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!
   

Comments

Lindsay said…
I'm so impressed that you have this up already! I'm still processing and trying to collect/organize all my thoughts and ideas...

Also, you're pretty nice yourself! It was an absolute honour & inspiration to meet you, however briefly :)
Sook said…
Lene,it was a pleasure meeting you and getting your input throughout the day. I enjoyed your post, you summed up the day perfectly. I left feeling very inspired and hopeful. I look forward to what future collaboration will bring. I think it's safe to say I won't be sculpting anytime soon either :)
J.G. Chayko said…
I was so happy to meet you face to face. I too, will have to send out a blog about this in the style of "the old lady". Looking forward to continuing to follow your journey.

Cheers,
Julia