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!

Sunday, May 11, 2014

Happy Mother's Day

To all the moms out there, but especially mine – I wish you a wonderful day full of love and laughter.

A number of times in previous posts, I've mentioned how great my mother is, and how grateful I am to have her.  The reality is she deserves much more … but the least I can do is write today’s post just for her.

For the most part, my mom raised me on her own.  My parents split when I was three, and though my father was technically still around, that wasn't always a good thing.  She remarried a few years later, but my stepfather was hardly a parent either.  Still, with just one real parent, I know I was luckier than most people with two (or more).

My mom is the reason I am who I am today.  Just by being herself and leading by example, she taught me to be giving, caring, and compassionate, and to always think about others.  Just as she learned from her mother (my Gram), she taught me to dedicate my life to helping people, to giving back.  When anyone asks why she does so much volunteer work, she has a very simple answer: “because I can.”   

Tuesday, May 6, 2014

A Day to Distinguish

Arthritis: "Oh, my grandmother has that – take a couple Advils and you’ll be fine."

Autoimmune arthritis: "Um ... huh?"  

"It's not just arthritis."
This is where IFAA – the International Autoimmune Arthritis Foundation – comes in.  Started in 2009 by a woman just like me who was frustrated by the lack of understanding about her autoimmune arthritis diagnosis, IFAA aims to raise awareness about the difference between the two. 

In addition to the physical symptoms, patients with autoimmune arthritis diseases are often on the receiving end of judgment, doubt, and derision from doctors, colleagues … even friends and family.  It’s not (entirely) their fault though – much of this contempt comes from a lack of understanding.  Most people have never heard of these diseases and have no idea how they affect us, so they can’t imagine it could be as bad as it truly is.  Because autoimmune arthritis diseases are so inconsistent in how they present from patient to patient (and even within one patient, from day to day), doctors have a hard time diagnosing us … which means it’s a long time before we can get answers – and even longer before we can get treatment.  IFAA hopes to change all that.

Thursday, May 1, 2014


I'm really excited to be participating in the WEGO Health Health Activist Writer's Month Challenge.  I'm hoping that the challenge factor will motivate me to write more often (every day this month, in fact!), and that that will develop into a habit of writing regularly after the month is over.  More importantly, I'm hoping that by sharing my experiences, thoughts, and insights about living with chronic and invisible illnesses, I'll be able to bring comfort to someone struggling with the same issues.
*Note - I'll be including this introductory paragraph at the beginning of every post, so that anyone who's checking in for the first time will have that background info.  If you come back another day (and I hope you do), you can skip this part and jump straight to the day's post, below!

Today’s assignment: You did it! You've crossed the #HAWMC finish line. Recap the past month.  What did you enjoy, what didn't you enjoy? Favorite prompt?


I did it!

I’ll be honest – I wasn't sure if I’d be able to do this.  Writing every day for 30 days – and writing meaningful posts at that – it’s more than I've ever done since I started the blog (though I’d always wanted to), and it was definitely a lot to ask of me.  That said, I've never been one to back down from a commitment, so once I decided to start, I knew I had to finish.  There were days when my post wasn't finished until 11:59PM … but that still counts – I got it done!    

Overall, it’s been a great experience.  As I explained in Day 7’s Why I Write, when I've written for this blog over the past few years, it’s been a cathartic experience for me, and a way to cheer myself up when life brings me down.  At the same time, it was a way to connect with others who have had similar thoughts and feelings, showing that there is always a silver lining, and that together we could get through anything.  With the specific focus on chronic/invisible/autoimmune illnesses, I’m still doing that, but there are two new – and very important – goals to my writing: