Found this article in the NYTimes, and since I know many of us can't drink alcohol due to the meds we take, I wanted to pass it along...especially for those of you living in NYC!
When the next Happy Hour comes along, you all know where to go, or can get some fresh ideas of how to mix up a tipsy-free drink for yourself.
Cheers!
Anyone who has followed my blog knows I'm a shoe girl. Even if you are just visiting this blog for the first time, all you have to do is take one look at my signature photo on the right in sassy red heels to be clued in to this fact.
But today, I'm writing about a different kind of shoe than I normally wear. They have laces and a rubber sole, and would definitely be out of place at most parties or nights out on the town. But I'm writing about this pair of shoes because in a few months on May 15, I am going to strap them on for the Arthritis Walk in New York City as part of the NYC Sick Chick Club team! I've never done an Arthritis walk before, and when I was first diagnosed with RA and couldn't walk without a severe amount of pain, the idea of a walk for arthritis seemed a tad ironic and a little off the mark. Three years later, my RA is well-managed enough to let me walk a 5k, and I'm thrilled that I get to do it with some of the coolest sick chicks I know to help the Arthritis Foundation raise money to help all of us who suffer from autoimmune and other forms of arthritis.
If you would like to help the NYC Sick Chicks meet our fundraising goal (or even exceed it!), OR if you are in the NYC area and want to join our team for the walk, then head over to our team page here to donate, sign up, or help us spread the word by sharing the link on Facebook, your own blog, twitter, etc.
You can bet that the NYC Sick Chick Club is going to be out in our finest Sick Chick gear! I'll keep everyone updated as the date gets closer as well as updates on the walk!
Thanks for helping spread the word!
In this season of thanks, is your disease something that you would say you are thankful for? I say no...I'm thankful for many other things that have resulted from it, but still maintain that my RA deserves no thanks at all. Read my article over at MyRACentral.com for my full thoughts, and then weigh in.
Have a Happy Turkey Day!
A Day in the Life, Version 1:
My alarm goes off. It’s 6 a.m., and even though it is still pitch black outside, I turn over, wipe the sleep out of my eyes, and get out of bed feeling refreshed. I stretch out my yoga mat and sit down, beginning my practice with a few om’s and some stretches before moving on to sun salutations and some more vigorous asanas. After working up a sweat, I cool down in one of my favorite restorative poses for my final resting pose, then close my practice with a few minutes of meditation. . .
A Day in the Life, Version 2:
My alarm goes off. It’s 6 a.m. It’s still pitch black outside, but if I want to practice yoga before work, then I have to get up now. My body feels like lead, and I would prefer to sleep for the rest of the day. I reset the alarm and promise myself that I’ll exercise after work, even though deep down inside, I know there is a very good chance this won’t happen, and I know very much that I ought to just get up. An hour later, my alarm goes off again, and I curse before grudgingly turning over. I stretch my stiff toes and the soles of my feet against the bed sheets while I put off the inevitable. My body feels worn. . .
Click here to read the rest of my article on MyRACentral.com and leave a comment!
One of my very favorite chefs, Seamus Mullen, was featured this month in Food & Wine. In addition to being a world class chef, Seamus also has rheumatoid arthritis. Word on the street is that, since leaving the restaurant Boqueria behind over the summer, he's now working on a cookbook that will be chock full of recipes using what he refers to as 'hero' foods. You can preview a few tasty sounding recipes in the Food & Wine article and read more about his take on why they are especially healthy for us. One of them is for kale chips, something I've become obsessed with the last few months. It's super easy to make, and kale is purportedly one of the best foods one can eat- whether you have RA or not!
A few weeks ago, I had my regular three month check-up with my rheumatologist. As per usual, I came armed with a bunch of questions. This time, most of them were of the hypothetical nature since my RA is (so far) staying within some reasonable boundaries.
I'm fortunate in that my rheumatologist is happy to take his time to really talk through all of these questions. He gets that RA impacts my life- not just my life right now, but my future life, and he's invested in making sure my treatment plan supports my future goals. Even so, I was pretty sure I knew what the answer to one of my questions would be: a big fat NO.
As I've written about before, I love to travel. I have ever since I was a little kid, and as I've grown older and matured, so have my adventures abroad. In high school and college, I was pleased as pie to visit Europe, but by the time I graduated, visiting wasn't enough; I wanted to live there. And so I did- in London and in Prague, and it was one of the best times of my life.
After being diagnosed, my determination to keep traveling only increased as a way to rally against what my body was doing to me and exert some control over what I feared was inherently uncontrollable. My trips became two and three week adventures that involved feats I hadn't even attempted before I had RA (think punishing, high-altitude hikes on island mountains and desert peaks). I've always said that if I won the lottery, I would spend at least one year traveling around the world, seeing as much of it as I could. It may not be everyone's dream, but it's definitely mine.
Happily, I've found someone else who feels exactly the same way. My boyfriend's travel chops are more impressive than mine, and we both fantasize about traveling to the ends of the Earth, quite literally. Recently, we began talking about how amazing it would be to take three or four months and travel around Asia and Australia. It sounds blissful, but before I could escape into the fantasy too far, reality came along to check my wanderlust. I realized it probably isn't possible for me to do something like that. After all, I take two shots a week of a medicine that has to be kept cold- something that would make traveling for that amount of time pretty darn impossible. Maybe this doesn't seem like a big loss to others, but to me, it felt like a depressing barrier imposing itself in my life. My boyfriend could take off on this type of adventure that I would love to do, but I can't. He can do it, but we can't. It felt like being left behind.
Stubborn RA gal that I am, I decided it was worth talking over with my doctor before I resigned myself to never being able to take this type of trip (though I'd also have to overcome more mundane obstacles like money and time off from work for it to ever be realized).
Sitting down with my rheumatologist, I prefaced my question with 'I think I know the answer to this, but humor me.' And then I asked if it would ever be possible, given my RA and the medications I'm on, for me to travel the world for three or four months.
Without blinking or missing a beat, he replied, 'Of course.' Uh, really? How?
So we talked about what the obstacles would be medically, and what some possible options could be. His main suggestion was to think about switching to a drug that can be taken less frequently for the duration of this hypothetical trip, and to arrange a few points during the trip for a 'drop off.' In other words, arrange with someone back here to pack the shot appropriately and fedex it to a particular city for a particular day. Obviously, that would cost money, and it would take a willing cohort on this side of the Atlantic and some serious planning, but somehow, it did make it feel more possible. More than that, the fact that his answer had been yes made that barrier feel much more penetrable.
I'm not planning this trip yet, so there is no need to switch to another medicine, especially since Enbrel is still working like a charm for me (knock on wood). But, we did decide that I'll move to taking both of my shots at the same time to see if I still experience a drop off at the end of the week. When I first began taking Enbrel, I took one 50mg shot a week, but I got majorly scary injection site reactions and felt like it wore off by the end of the week. That was two and half years ago, so I'm hoping that I won't notice the same effect this time around. And then maybe, if all goes well and the other obstacles can be overcome, maybe I can actually travel around the world. Even with RA.
Happy Birthday to my Rheumatoid Arthritis:
It's been three years since you showed up unexpectedly in my toe, all full of yourself (and me, I might add). I didn't exactly invite you in, nonetheless, you made yourself right at home in the majority of my joints. Hell, you even introduced me to some I didn't know I had!
Of course, you were rather coy at first, not telling me your name, or how long you intended to stay. All I knew was that I'd never felt quite like this before in my whole life - all 28 years of it! Before you, I would cavort around all night long with reckless abandon, wearing three-inch heels and closing down the party. Before you, I practiced yoga as if all my joints would work properly for the rest of my life, or at least into middle age, doing absurd things like standing on my head and my hands. Before you, I expended energy like I had it to waste, throwing it around carelessly on anything and everything, or sometimes nothing at all.
In fact, before I met you, I thought doctor appointments were something you only had to endure once a year. How little I knew of the medical world back then. I took insurance plans for granted, like they grew on trees and had nothing to do with gainful employment. I hadn't yet had the pleasure of getting my body scanned, smushed, prodded and pricked by total strangers. Isn't it hard to believe that back then, I only took pills on an elective basis?
But since you walked into my life, all that has changed. I now understand so many things I didn't before. You've been very instructive, educating me on the endless dimensions and levels of pain so that we are on an intimate basis. I am now a whiz at taking pills and sticking needles into my thighs. Thanks to you, I have firsthand knowledge of what it's like to be so tired you wish you could sleep for the next 20 years, or maybe 40. You have shown me the apparent folly in things like high heels, small buttons and screwtop caps. You have even taught me the value of being able to clean and dress one's self as an adult; the beauty of independence in the form of mundane tasks like washing dishes and carrying groceries; the courage of getting out of bed in the morning when one's entire body refuses to behave or function rationally.
I have learned all these and many more lessons since you arrived in my life. But perhaps most importantly, I have learned that, though you may reside in the very cells and inner linings of my body, you are not me. You don't even come close.
So, in celebration of this third anniversary of having you in my body and my life, I have bought a pair of ridiculously obscene high heels that defy logic, gravity and yes, even you.
Happy F***** Birthday, RA.
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