Tuesday, April 22, 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 will have that background info.  If you come back another day (and I hope you do), you can skip this part!

Today's assignment: Hobbies!  We at WEGO Health love hobbies. Tell us, what are YOUR hobbies? Are you a rock collector? Scrapbooking? Photographer? Dancer? Share your talents. (Pictures encouraged)
This was definitely another challenging post for me.  It wasn’t as much hard to write as it was hard to think of a hobby.  Honestly, I felt kinda lame as I thought through it all.  I don’t scrapbook, I don’t paint, dance, sculpt … I don’t play laser tag or video games.  I don’t run ... I don’t cook.  I really started feeling pretty pathetic, thinking about all the things I don’t do.

I used to do all kinds of crafts – in fact, years ago I was the go-to person for party favors and decorations.  But that was a long time ago.  Lately, I’ve done a couple of things when someone invited me to a class, but 2-3 projects in a year hardly counts as a hobby.
Then I started thinking about collecting – is there anything I collect?  I guess you could say I collect butterflies (or should I say buttahflies  ) – I have hair clips, artwork, post-its, mugs, jewelry… just about anything that could come with butterflies, I have.  The thing is, it’s not like I actively go around collecting them or searching for specific pieces to complete my collection; I just get them when I go somewhere and see something I like, or I get them as gifts.  In recent years, I could say the same about peace signs - pads, pens, mugs, etc.   Some would say I collect Alex and Ani braceletsI've got about 25 with the meaningful symbols (yes, that includes one with a butterfly and one with a peace sign), and a handful more that just looked really cool.  Still, I’d hardly call that a hobby.

Next, I thought about reading.  It’s something I've always enjoyed, but recently I feel like I haven’t done it nearly enough.  I’m in the middle of a couple of books now, but I spend more time reading online (articles and pages about my illnesses, and blogs from others writing about theirs)  partly for the increasing need and interest, and partly because it really hurts my hands to hold a 600+ page book open (I’ve been fighting it, but I’m really going to have to buy a kindle sooner or later).

Making Strides, 2003
I don’t know how much it counts as a hobby, but something I love doing (so that makes it count, right?) is volunteering for different charities.  I’ve been doing that for most of my life, mostly alongside (and because of) my mom and my grandmother.  I’ve spent years helping Special Olympics, New York Blood Center, American Cancer Society, and more.  With my last job, I was working so much that I didn't have time to volunteer anywhere else.  Though I was working 50-60 hours/week for the fight against cancer (more during the busy season), I actually felt bad that I didn't have time to volunteer.  One of the silver linings of losing my job a few months ago is that I've had time to volunteer again.  I may not have the strength or energy to run around as much as I used to, but where there’s a will, there’s a way!  The International Foundation for Autoimmune Arthritis (formerly International Autoimmune Arthritis Movement) works entirely online.  I am excited to be a part of World Autoimmune Arthritis Day (WAAD), an online event geared towards raising awareness about autoimmune arthritis diseases, and differentiating them from osteoarthritis.  WAAD aims to spread the message that it’s not just arthritis, and it’s not just a consequence of weight or age – these are autoimmune diseases that affect the entire body, and that have no cure.  I've also become a volunteer advocate for Arthritis Foundation, which enables me to reach out to local politicians and community members to gain support for arthritis-related legislation.  It’s definitely a different feeling to volunteer for my own cause rather than someone else’s.  On the one hand, it’s empowering: I will not just sit back as a victim to my own diseases; I will do everything in my power to make a difference, so that maybe someday there will be a cure … or at least a better way to treat my conditions.  On the other hand, I am well aware that I am not alone in this; I am also fighting for the millions of people suffering with these diseases.  

Finally, the hobby common to everyone participating in this challenge is writing.  I used to write poetry, and even tried my hand at short stories a while back, but that all faded away years ago.  Then for a while, all the writing I did was in a private journal: mostly thoughts around food/eating, & how they affected (and were affected by) my feelings.  I started this blog a few years ago; it was an exciting opportunity for me to get back into the habit, with a positive message to share along the way.  Even that had fallen to the wayside recently, as I’d felt that I wasn’t doing well enough to write – I didn’t deserve to be the example, because I was in such poor shape – both with weight and with health, and of course, each makes the other worse.  What I realize (and just have to keep reminding myself), though, is that that’s exactly when and exactly why I should be writing.  For one thing, it helps me work through my own feelings & issues.  More than that, though – if I’m writing for a public forum like this, and my goal is to actually help other people who are struggling, what kind of message does it send to say that I can’t write if I’m not in great shape?  If I am trying to preach a message that you are good enough just as you are, you are worthy, you are strong, and you can get through anything … then I’ve got to start by believing it about myself.  Personally, I’ve always been more inspired by people who were struggling than by those who seemed to have it all together.  With that in mind, if I have any hope of inspiring my readers to believe in themselves, I’ve got to live by the same idea.  I am good enough just as I am.  I am worthy.  I am strong.  I can get through everything.  I can’t do it alone, but luckily I don’t have to ... and neither do you!  This WEGO Health Health Activist Writer's Month Challenge has given me the excuse and the opportunity to get back into a hobby I have always loved but fell too far away from: writing – for my blog, for my readers, for myself.

**If you like what you read, tell a friend.  In fact, tell me, too - post a comment below!  If you don't ... well ... I'm all for honesty, but ... please be gentle!