The Single Gal's Guide to Rheumatoid Arthritis

When the Pain Isn't Caused by the Disease

The photo above is one I took of a statue in Brussels.  Legend has it that if you rub the statue and make a wish, you will get your heart's desire. Unfortunately, life isn't always so legendary. Read my latest post on life and love here.

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:

 

Double the Fun

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.

 

 

14 Hour Flights, Sharing Needles and a bold admission.

In case you hadn't noticed, I have been on vacation, in more ways than one.  I've taken what seems like an endless string of small trips and mini-breaks here and there for about the last two months, with one or two longer trips thrown in.  Consequently, I've also taken a default vacation from blogging! This is my attempt to make up for the last month:

As promised in my last post, I have written about my survival of a 14 hour flight to Korea and back this past June.  It was my first time in Asia, and my first truly long distance flight with RA. Despite being a travel-addict, I was a bit terrified at the prospect of such a taxing flight, but I was just as determined and excited to finally check another continent off my list. Check out the article and the great comic strip that goes with it by Jane Samborski over at MyRACentral.com to find out how it all turned out.  

For those of you who have been following my dating woes and windfalls, you can also read my latest article while you are there about shooting up in front of my boyfriend for the first time. The experience was a little scary, and I felt pretty exposed confronting this milestone. I'll be doing it again this weekend for the second time, and I still feel a little self-conscious about it - my own issues, not his.

On a lighter note, Savannah and Charleston were amazing over July 4th! Savannah was breathtaking and full of romance. Who wouldn't feel seduced by all those old, gorgeous squares dripping with moss and mystery. 

 

That, mixed with the humidity of a proper summer night in the South, made for quite a relaxing start to our trip. We followed it up by heading to Charleston. I had been there once before, but was still blown away by its charm, and being there with a beau made it even more enchanting. What can I say- being in love pretty is pretty divine! 

In typical Sara-fashion; however, I overindulged on all the delicious Southern fare I'm partial to, including this world famous coconut cake:

Yes. I ate that. Hence, I am back to steadfastly following my Weightwatchers regimen since (and I am admitting it here boldly) I have totally gained back all the weight I took off!!!!!!  Boo hiss. Sad but undeniably true. Between saying good-bye to New York by essentially eating my way out of the city, the holidays, traveling around the world and being back in a relationship, the pounds have slowly crept back on over the last year.  I'm bummed, but trying not to be discouraged. I can't really blame this one on RA, which I guess is good news, in a way.

In addition to Korea, Charleston and Savannah, I've also taken a trip back up to New York City for a bridal shower for one of my dearest friends and have been running around in the meantime between here and the D.C. area (where my boyfriend resides), and am heading out next week to the beach to see my family, so I feel like I am constantly living out of a suitcase.  

Speaking of which, for those of you who follow me on Facebook, I finally landed on what I think will be the perfect new suitcase!  After my last few trips, it became abundantly clear that my old suitcase was way too heavy, not to mention beat-up and outdated.  So I searched methodically through tons of different suitcase options (thanks to all who shared links and suggestions) and, after getting one that seemed perfect but was, in the end, too small, I am now in possession of this 22-inch wheelie that weighs only 7 lbs, 13 oz! I'm looking forward to taking it on its first trip next week.

In other news, I have done an excellent job of recommitting to my yoga practice lately, getting up in the morning FIVE days last week and two (so far) this week to practice before going to work.  It makes such a difference, so I'm going to try to keep it up as much as possible, while keeping an eye on some pesky finger swelling and wrist-ickyness that has been popping up recently. Is it the weather? Is it stress? Who knows. Maybe it's just because I have rheumatoid arthritis, and that is what rheumatoid arthritis does.

I hope everyone's summers have been going well, though perhaps at a slightly slower pace than my own (I cannot believe it is nearly August). Thanks for continuing to read even when I'm not so faithful. I am better at keeping up on my blog's Facebook Page, so if you haven't already 'liked' it, head over and do so. There is quite a bit of activity on it from lots of people around the world, so it's not just me whingeing on about annoying RA everyday-ness. I hope to see you there, and I'll try to be better about being here!

Migraines, travel tips and Korea!

Oh, how tardy I have been!  But, I have a really good excuse, which I'll get to momentarily. If you are in need of some reading, travel over to MyRACentral.com to check out my last two posts, especially if you suffer from migraines or are getting ready to take a trip over the summer. (And while you are there, check out Lene Anderson's great post about getting relationship-ready.) 

Now, speaking of traveling, I just got back from Korea...and will be writing more about this epic long-distance trip soon. In the meantime, enjoy the above and have happy travels of your own this summer. My next stops are Charleston and Savannah!

 

Patients for a Moment: Adapting Around Illness

The latest Patients for a Moment blog carnival is up at Wellbook.org, and is all about adapting to an illness.  There are lots of different perspectives and takes on this question, including my article about my recent trip to Egypt and Jordan.  For me, traveling was not something I could imagine giving up and still being myself, so I've learned how to make some changes along the way to make sure I can still do it.

Read it all here.

I'll be hosting the next edition of PFAM, so keep a look out for more info soon if you are interested in contributing!

Comic Strip #22: The Dead Sea and Me

Who doesn't love being covered in green mud? Who says you can't travel to far away places with RA? Not me! Read the first post about my recent trip to Egypt and Jordan here.

I want my RA TV

I'm back!  I am completely jet-lagged, as evidenced by the fact that I am writing this post at 6.30am, which is not a time I am ordinarily up, let alone putting sentences together.  The trip was, in a word, amazing. It was intense, beautiful, awesome, serene and frenetic depending on the day and the place. Thanks to all of you who offered encouraging comments on my Facebook page along the way! 

Over the next few weeks I'll write up a detailed account of my (second) trip of a lifetime, but overall, I did really well!  I definitely had moments where a hip, a wrist, a knee, a foot or all of the above were feeling unhappy and appalled by what I was asking them to do, but for the most part, the pain didn't last too long and didn't prohibit me from doing anything I wanted to do, and I didn't have to take my fallback prednisone!  The relaxing lie-on-the-beach portions of the trip were well placed to offer recovery time from what was literally the hike from hell (climbing Mt. Sinai in the dark at midnight beat the pants off what I did in Peru) and scrambling around arches and big rocks in Wadi Rum and Petra. All I can say is, thank god for the Dead Sea Spa!

While I was away, the first of four segments I shot for WebMD's RA TV went up!  I watched it from a small internet cafe in Luxor, Egypt that didn't have any sound, so I was quite relieved to finally watch it with sound yesterday; I feel pretty good about how it turned out, and excited for the next one that will air tomorrow!  You can check them out here, under the My Life with RA series.  Please help me spread the word about the segments by sharing this link on Facebook, Twitter, or plain old word of mouth.

OK. I'm off to figure out what living in this new city is all about! Next big task: dealing with switching my car over to Maryland. eek.

Some housecleaning before I head to the Middle East:

 
Well, I am all moved in!  For the most part it went well, and except for a few bruises and slightly achy finger joints and feet, I am (knock on wood) feeling pretty OK from it all, which is a good thing since I leave for Egypt TOMORROW! 

While I'm away, the first of the Web MD series will go up on September 3rd.  Here's the link so that you can check it out...hopefully it'll be good!  I haven't seen it at all, so have no idea what the end result will be.

My latest article is up at MyRACentral.com, along with another great comic strip by Jane Samborski, so go over there and check it out!

Lastly, I will be checking in on my Facebook page as I'm able to in Egypt and Jordan, so if you are interested in getting updates about how I'm faring on my trip, make sure to check my Facebook page ove the next two weeks!

Hope you all have a wonderful end of Summer, and I'll be back soon.

Sara

Ugh.

So I just got off my flight, where I enjoyed non-stop live TV at my seat thanks to Jet Blue, whose new terminal at JFK makes flying feel almost glamorous and delicious. I was in heaven catching up on some of my favorite TV shows like The Office and 30 Rock that I normally have to watch via netflix and am perpetually behind given that fact. But what caught my attention most of all during the flight was not how cute John Krasinsky (my other virtual celebrity boyfriend) is, but the infamous Enbrel commercial where a woman, who evidently has RA, exclaims that she didn't know RA could attack her joints.

Wait, what?

Yes, you read that correctly. That is what it says.

You may have already seen this commercial.  I had only heard about it, but now that I've actually seen it myself, I have to say, I was horrified.  What were they thinking????? It was kind of embarrassing, and I found myself feeling surprisingly angry- commercials don't tend to bring up such strong emotions for me, but this one did. 

Enbrel, if you are reading this, please discontinue this commercial as soon as possible. I love what you do for my RA, but this commercial is insulting and makes out like people who have RA are completely ignorant about a disease that has no cure, will likely chop 10-15 years off their lives, and oh yeah, will completely take out all of their joints if they don't find a successful treatment.

If there is one thing anyone knows when you say the word arthritis, be it osteo or rheumatoid or psoriatic, it is that it affects the joints.

Please, for the love of all of us RA peeps, don't run this commercial anymore.

OK. I will put my soap box away now and go to bed, achy joints and all.