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.

 

 

Comments

[millicent]

Never say never!!

[Monica]

Yes! Thanks Sara - extended travel and future pregnancy are totally up there on my list of RA worries. You're reading my mind these days:)

[Carolina]

Hi there,

I've been following your blog since the summer, and your experiences with Enbrel inspired me to get that ball rolling and am now on that medication (with so far, good results! still early...)and have managed to avoid methotrexate!! And will do so as long as possible (preferably never)

I've had RA since I turned 16 after one year of having immigrated to Canada. So, it's been a long while, I'm 22 now. AND I've had my share of difficulties, I'll tell you that, since my RA factor is off the charts and I've had some really intense flare-ups.

In that light, I really enjoy the majority of your blog for the fact that you are putting our condition on the map and it makes people feel connected about a disease that when I was 17, had never made me feel so alone and helpless.

On the flip side, maybe it's because I've been through a tougher episode (and who knows what life has in store for me) but your attitude towards having it seems to be a bit dramatic. Excuse me for being somewhat critical, and having ventured into the world of writing I'm sure you've become accustomed to constructive criticism.

I guess what I wanted to say is that the overall feeling I get from your blog is complaints. I guess inherently blogging about our day to day lives will sound more whiny than anything else, since we often keep quiet about it. I've lived with it longer and possibly a more intense manifestation of the disease, so I might be more tempered in my attitude about it. Especially since I was an angsty teenager in the middle of it. Just, don't worry so much about it. It's serious, yes. It's life altering, yes.

But men won't run away screaming from you because of it.
You can live in a big city with it and screw anyone else who thinks they can assume things and have an opinion about something they're witnessing in a younger lady. Isn't that the entire point of NY, attitude? And the cabs are incredible. Public transit is my friend, and given how cold it gets in Toronto during winter, It's not a huge deal.
You will be able to travel loads, I've done it myself. Travel with friends, family, and it helps. Or just hype up on the advil or whatever works for you before a strenuous activity that doesn't happen often.

This has become a significantly long post, but I've been meaning to comment on your page, and I've found the time now. Now, it's sleep time before another long day at work.

If you're interested in getting in contact with me, I'd be really interested in doing so.

Hang in there, and cheers!

[Gina]

I've had these same conversations in my mind as well. My significant other and I have a sailboat and we like to take voyages that last a minimum of six weeks. Eventually we planned to take off on the boat for an extended trip (over a year), but it's become logistically quite complicated. And wouldn't you know it...I always feel my best on the boat. It's proof that good living is good for you! I haven't given up yet though! I can't wait to hear about your adventures!

[sara]

Millicent and Monica- thanks!

Gina- I heartily agree- good living is the best for you. Hope your boat adventure can work out at some point in the future, too!

Carolina- It's interesting because the criticism I get on this blog is normally in the other direction- that because my meds have worked for me (touch wood) and I was diagnosed quickly, that I am too positive or too light on what RA is like. I guess it all depends on what your own experiences have been. Just a few points though- I'm not in New York anymore- I've been in Baltimore for about a year, and the public transportation here is, well, lacking. Luckily I now have a car and live in a walkable neighborhood, too. Public transportion in NYC is great, but taking cabs on a regular basis isn't financially realistic for anyone who works in the non-profit arena like me, and all the subways involve copious stairs, so it can be a huge challenge for people whose mobility is limited by RA (or another condition). And that New York attitude can turn on you when you are the one going slow, so it can be a double edged sword.

I do still travel tons- If you check out the travel section of my blog, I certainly haven't let RA keep me from doing what I love, but I think it's worth noting the challenges, additional planning, modifications and emotions that come up surrounding it- especially for people out there who aren't experienced travelers but want to plan a trip and feel like the RA is prohibitive.

You sound like you have adjusted really well to everything and that's great. For some of us who haven't been dealing with RA for as long, we may need a bit more time to catch up, though generally, I think the tone of my blog is rather cheeky and upbeat, and I hope at times even funny. Thanks for the comment and some discussion!

[Tricia]

Wow! This is wonderful! You have a great doctor!

[RA Guy]

Taking such a trip would be quite inspiring, so I'm sending all of the extra energy that I have in hopes of things turning out as you wish them to.

Only recently, after years of living with RA, have I felt like I've finally "gotten my life back". It's a wonderful feeling, knowing that we indeed can continue to do many of the activities that we love while still managing our RA to the best of our abilities.

Your stories continue to be a shining example of this great attitude that I'm sure inspires many, many people...including myself. Thank you for that!

[liz]

Great news. I'm glad that you asked even though you aren't planning a trip immediately. Sounds like you have a supportive doc and that's wonderful. Now you can plan for that trip in the future.
BTW I appreciate what I have always considered your upbeat take on the challenges of RA.

[sara]

Tricia- I really do. He's awesome, and this is what I love the most about him!

RA Guy- thanks for the encouragement! I'm so glad that you are also finding your way back into your old life. And the feeling of inspiration is mutual :)

Liz- thanks as always! I hope you are also doing well. This conversation with my doctor definitely makes me feel like this could happen.... assuming I can find the money and the time off!

[Sarah Lulu]

G'day from a follower in Australia ...with a couple of issues of my own ...RA and Meniere's Disease ... I don't let much get in my way.

If at any future time you want to visit ...

I'd be happy to help.