The Single Gal's Guide to Rheumatoid Arthritis

What's Not Wrong?

With RA or any chronic/serious illness, it's sometimes easy to see what's wrong in your life, especially when you are flaring or haven't found a way to manage your illness.  In fact, at these times, it's often all you can see. Read my latest article about one reminder I have found through yoga that helps me climb out of that dark hole. Share your own stories here or at MYRACentral.com.

 

When Illness is a Family Affair

How has having a chronic disease impacted your family?  Are there others in your family who have exprienced a different illness, and if so, how has that impacted you?

Just a few questions to chew on with my latest article about how my brother-in-law's brain injury and my RA have a few things in common.  Check it out here.

Plagiarism sucks almost as much as RA does!

A few weeks ago, I spoke with a writer working on an article for Health.com about things you shouldn't say to someone with RA.  I spent a good hour of my time speaking with her, thinking I was doing a good service by helping out a fellow writer and spreading awareness about rheumatoid arthritis.  

Now, the topic of things you shouldn't say to people with RA is a common one- many RA bloggers, including myself, have written a variety of posts addressing some of the things we very commonly hear from other people about RA that drive us crazy.  For instance, I wrote this one way back in 2008, shortly after starting my blog, on how I hate hearing from people that 'Now is the time to have RA.'  There is even a blog out there called But You Don't Look Sick, another common response we RA'er's often hear. This topic is nothing new, but it remains a pertinent one for many of us.

One of my fellow RA bloggers, Kelly at RA Warrior, wrote a post back in 2009 called 20 Things Not To Say To A Rheumatoid Arthritis Patient.  While I have read lots of Kelly's posts, I haven't read them all, so when I saw the recent article on Health.com which included several quotes from me, I unfortunately didn't catch the very striking similarities between Kelly's article from 2009 and the one which Health.com just published.

A reader thankfully alerted me to this fact yesterday, and I headed over to Kelly's blog to see for myself. I would encourage all of you to please head over to RA Warrior and do the same.  Again, while the topic is very common and no doubt many of us have written about our own experiences with it, the evidence Kelly presents is pretty, well, damning. It really does appear that they completely ripped off her work.

When I saw this yesterday, I was mortified. All of us bloggers work very hard on maintaining our blogs as a way to create and support the RA community. Most of us don't get paid for maintaining our blogs or for the time put into our writing. I know Kelly pours tons of time into hers, and as a result, her blog is a huge resource for the community.  I, too, have found my writing on other websites in the past-sometimes with attribution, sometimes not. When this happens, it really sucks. It feels like you've been suckerpunched.  Most of us who write extensively on our blogs post Creative Commons licenses to help protect our work, but unfortunately, many people seem to think it's ok to steal our work anyway and post it as their own. So far, I have never found my writing on another website that is using it to make a profit, though, and this is what feels really galling about Health.com, which does make money off of the advertisements it sells next to its content. I feel really horrible and angry on behalf of Kelly, and also really angry that I was inadvertently roped into this in any way. I wish I had known better. I wish I didn't need to know better.

More than that, I wish that instead of ripping patient writers off and thinking we won't find out, that publications and websites would hire from the source and give credit where it is due.  There are a lot of talented writers in the patient community who would be happy to be hired to write for other publications. Stealing the work of others is simply not OK.  Shame on anyone who does it.

If you passed links on to the Health.com article, please take the time to correct it and give credit where credit is due.    

 

 

Mocktail, anyone?

 

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!

A Heart Choice

Oh, the dreaded beginning-of-a-new-year diet...but this time, I'm making some genuine changes to the way I eat.  Not just for the sake of my RA, but also for the sake of my heart. February is Heart Disease Awareness month, and heart disease is one of the biggest killers of women out there. Unfortunately for us, RA comes with an added risk of heart disease, and while I've put off doing anything about this fact for the last three years, I'm now ready to take some heart-healthy steps. Read about the changes I'm making in my latest article at MyRACentral.com. 

Have any of you made changes to what you eat or how you take care of yourself with your heart in mind? Is the elevated risk of heart disease that comes with RA something you think about?

 

It's Complicated

As Valentine's Day approaches, it's not all roses and hearts . . .

Hit Me With Your Best Shot

Just about two years ago, I wrote a post about life as a two-shot girl lamenting the fact that my rheumatologist at the time didn't think I was quite ready to halve my dosage of Enbrel. Though a wee bit disappointed, I felt partially relieved as the idea of shaking up my drug regimen, though it was working pretty well, freaked me out.  When all was said and done, I was fine with not rocking the pharmaboat. In other words, if it ain't broke, don't stop medicating it.

That is no longer the case.  After three full years of shooting up not just once, but twice a week due to the insane injection-site reactions the 50mg shot gave me, I am beyond over my double-the-shooting-up-fun drug regimen. Along with the physical fatigue that RA has brought, I have developed a bit of drug fatigue. Mind you, I am diligent in taking them all, but let's just say it's not exactly the high point of my day or week. 

Now, I know that many of you are still struggling to find a drug or treatment that works, so I feel a little guilty sharing this news, but I'm so excited about it that I just can't help it. During my appointment with my rheumatologist today, we spent about an hour talking over my plethora of questions and discussing how I'd been feeling since my last appointment. I told him that I'd had to go off my shots for a period of three weeks not once, but twice in the last few months due to nasty colds....but that while off them, I hadn't noticed any increase in pain, fatigue or inflammation. We talked awhile more about how amazing it was that studies are now being done on how to safely taper RA patients off their meds- something that was beyond inconceivable only ten years ago. He examined my joints, gave me a little smile, and declared that I could go down to one 25mg shot of Enbrel a week!!!!!!  Now, this is a only a trial-if my symptoms increase, I'll be back to two shots before you can say biologic. I have to get additional X-rays to monitor my joints and keep a journal about any changes I notice BUT as of now, I am cutting my dosage in half. 

Take that, RA!  

I'm still keeping on with the plaquenil as much as before, but maybe, just maybe, there are fewer shots in my future.  I'm keeping my fingers crossed that this goes well, and so are my poor little thighs (OK, they aren't so little at the moment, but that's another post), which are so over being pricked every week. 

For all of you who are reading this and thinking, gee, how spiffy for her, but I can't even find a drug that works yet, try to hang on.  My chat with my rheumatologist today offered a few glimpses into some promising and exciting drugs and research studies that are being done right now. There are several new drugs in the pipeline that will hopefully be ready for FDA approval within the year or soon after, and they don't involve needles! Plus, he himself is doing research on how to better and more precisely measure patients' individual experiences with their disease, including how it impacts their daily life, in order to deliver tailor-made treatment and management programs for each person with RA. I think that things are going to get better, bit by bit, for all of us. At least they are if my rheumatologist has anything to do with it (he really is totally awesome, if you can't already tell)!

As for me, when next Monday rolls around, this sick chick will only be getting one shot, and that feels pretty darn good.

Tying on a Different Pair of Shoes

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!

 

Resist or Surrender? You be the Judge.

Recently, I posed the following question on my Facebook page: What are your thoughts on the idea of surrender as it relates to RA?

It got a pretty interesting discussion going.  Many of you felt that surrendering was akin to giving up, giving in and letting rheumatoid arthritis win.  Some of you felt like surrendering was more related to acceptance, and that this wasn't always a bad thing.

I've just posted my article about surrendering...and it's opposite, resisting, at MyRACentral.com.  Have a read, and then feel free to add to the discussion by leaving a comment! (PS: you have to read the article to understand why I chose the picture above!)

To see the original thread on Facebook, click here:

 

Out in the Cold

It's cold season in more ways than one; read my latest article at MyRACentral.com and don't get left out in the cold!