Right from the moment we were invited until the last good-bye we were treated like royalty. What could be better than a sound sleep in a good bed at the Hyatt Regency, great meals at Mix Bistro and Frank in the Art Gallery of Ontario, interesting people and a stimulating and beautiful venue that is the AGO?
- Marianna Paulson (@AuntieStress) August 15, 2014
Here are some of my random thoughts on the agenda:
Tick tock, eyes upon the clock
I really appreciated the fact that the agenda included a number of breaks - something that is important, especially if you want the best from your audience; particularly if your audience includes people who have chronic illnesses.
The agenda was well-padded with sessions that included: Social Media Boot Camp Panel Discussion, Satisfaction is Possible: Simplifying Arthritis Treatment, Bridging the Gaps in Care and Reaching Arthritis Patients, Brainstorm and Ideation Session, Event Feedback Forms and an Art Activity. Given the healthy discussions and the wealth of information that was shared, I felt that the schedule needed more breathing room.
So much more is now known about the importance of early treatment. Biologics such as Remicade (made by Janssen) were certainly not around when I was diagnosed thirty-six years ago. There is so much more information and support readily available. Patients have more input. The treatment landscape has certainly changed - for the better.
I would have liked to have met representatives from Canada's north and the under-serviced regions where patients have to travel great distances, at great expense, just to see a rheumatologist. When I lived in Northwestern Ontario and in Northern Manitoba, there were times when I had to travel to Winnipeg, Manitoba to see a rheumatologist.
Et je suis sûr, qu'il y a des bloggers bilingues au Québec. Peut-être, la prochaine fois! And I'm sure that there are bilingual bloggers in Quebec. Maybe next time!
Talk and share
I particularly liked The Parking Lot - an idea and discussion generator that involved using stickies to delve deeper into:
- Communication Gaps.
- Patient Needs.
- Questions - such as what would you tell a younger version of yourself?
We learnt that Renoir was diagnosed with rheumatoid arthritis. Did you know that? I also discovered that I have a very long way to go before I can become even a mediocre sculptor. Oh well, I had fun, anyway.
I find myself reflecting upon Dr. Dixit's words:
"The goal of treatment is to get someone back to how they were before diagnosis."
What that would have meant for me is no hip replacements, forefoot surgeries, fusion of C1-C2, synovectomy and arthroscopy of my elbow, a sub sub-talar joint, nor deformed and dislocated fingers and toes.
What RA has done though is to set me on a journey of personal growth that included learning about stress and, more importantly, regularly transforming it. In other words, I had to give up to get. Maybe that's get to give up?
Dr. Dixit mentioned that he sends his patients to a naturopath and I seem to remember that he said he also recommends that his patients see a social worker. Wow! I think that's fabulous as, the broader the team, the greater the support system. Healthcare incorporates self-care and self-care is our responsibility. That team is there to give a nudge or in some cases a push (a gentle one) into the right direction.
I haven't done it yet, but I want to try my hand (pun intended!) at redoing the hand art activity with Model Magic. *Sigh* If it were only so easy in real life, I'd ask for redos of both of them! The fact that Kate is willing to put them in her office at Janssen speaks highly of her kindness.
Events such as this one would be great for patients who are reeling from a new diagnosis. Support, information and an opportunity to create, while having fun and meeting new people. I'd love to take the show on the road with you!
Often, a different seat in the house results in a different experience. Here are some opinions from the other audience members:
- #LivingARTHfully: Connection and Inspiration by Lene Andersen, who punctuated this post with fabulous candid shots. No wonder she is a co-founder of Show Us Your Hands - the deftness with which she uses her camera is admirable!
- Swollen Joints, Flares and Inspiration from Julia Chayko. I was particularly impressed with Julia's keen observation at the introductory dinner: "The funny and marvelous thing about this first night was that we didn’t talk about arthritis. Nobody said, “Hi, I have RA, what do you have?” Nobody compared their illness, or bragged about who was the most indisposed (a strange sport I have observed in medical waiting rooms)."
I have to get pointers from Lene - she seems to be well skilled in the art of snapping photos while actively listening. Here are some of the few that I took.
A heartfelt thank you
I adore surprises - good ones, of course. So, I'm grateful for this out of the blue invite. This event was a great way to end the summer. Additionally, I was able to tie in a visit to my sister, whom I hadn't seen in two years. We are fortunate to live in a pretty great country, filled with great people. I appreciate getting to know some of them, and look forward to deepening our connections. Thank you to the wonderful folks at GCI Group and Janssen, Inc. for making this opportunity possible.
You may also be interested in: