Sunday, May 18, 2014

Busy May, Busy Me!

Did you know?
... and I've been busy, doing just that!
I may not be able to be run around and do as much as I have in the past, but I've recently been invigorated by finding ways to be really active ... without having to be really active.  Last month's writing challenge gave me a greater purpose, enabling me to use my writing to help people with chronic illnesses and educate the ones who care about us ... and now I'm on a roll!  Arthritis Month, also known as Arthritis Awareness Month, couldn't come at a better time.  Keeping up the momentum of last month's busy pace, this month has presented a number of really great opportunities.

Last Monday was Fibromyalgia Awareness Day.  Though still a poorly understood condition, fibromyalgia is one of over 100 diseases that falls under the "arthritis" umbrella, so it was fitting that this was the day chosen by the Arthritis Foundation for its first New York State Arthritis Awareness Day.  To commemorate the day, I joined about 20 other volunteer advocates and a couple of AF's staff at our state capital to meet with our local politicians.  We took the time to share our stories, and help them understand that arthritis is "more than just grandma's aches and pains," as a fellow advocate so eloquently put it.  I was pleasantly surprised to see (some of) them genuinely care and truly listen, and best of all, to see that look in their eyes when they were really learning something new.  

Yesterday was my next big venture, the Walk to Cure Arthritis. It was exhausting and exhilarating at the same time, and I'm so glad I did it.  I had a team with me this time (the Buttahflies, of course), and we all did double duty: first as volunteers, and then as participants/walkers.  As mission volunteers, we recruited over 80 e-advocates to show their support for the cause. As fundraisers, we raised about $800 (not bad for our first time, but I know we'll do better next year)!  As walkers, we ... walked!  It was not easy for some of us who were not in great shape, but we encouraged each other to keep going, took breaks when we needed to (getting more e-advocates at each break), and most importantly, we finished, and we finished together!

What's coming next is even more exciting ... and it's something anyone can join: World Autoimmune Arthritis Day.  

Over the past few years as I struggled to understand what was wrong with me (and even more since I've gotten my diagnoses), one of the things that's been most frustrating is the lack of understanding from doctors, coworkers, and even friends.  Because I look healthy, people do not believe that I am sick.  Because pain is invisible, they don't believe that it is as severe as I suggest.  When they hear the term arthritis, they say that I am too young, or think that it is just a bad ankle.  They are wrong.

It's not their fault, though.  They don't know any better, because no one ever told them any different.  We're here to change all that, starting tomorrow.  

The World Autoimmune Arthritis Day (WAAD) convention takes place entirely online so that anyone anywhere can attend, even if physical limitations make it difficult to get around.  It lasts 47 hours to cover May 20th in all time zones around the globe.  Throughout the event, patients and caregivers will be sharing their experience, and researchers and health professionals will share the latest developments. There will be live chats with featured guests and bloggers (my chat is scheduled for Tuesday at 9PM ET), resource booths from many nonprofits, and a chat lounge for casual conversation.

So ... whether you can join us for 47 seconds, 47 minutes, or the full 47 hours, I am sure you will get something positive out of attending this year's World Autoimmune Arthritis Day convention.  There's still time to pre-register, and get a WAAD14 shoulder bag (while supplies last).  

Hope to see you there!
... and hope to see my bed after it's all done - I'm tired just from writing about all this excitement!

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