Sunday, May 22, 2011

Traveling (Alone) With Lupus And Rheumatoid Arthritis

For the next edition of Patients For A Moment, Maria at My Life Works Today! wants to know what your goals are for the summer, which you won’t let illness get in the way of. This topic is very timely for me, as I prepare for what promises to be a crazy summer.

As I talked about in my last post, I have a lot of traveling to do this summer. Most of it is for my dissertation research. I never intended to have a dissertation topic that would require me to travel, but that’s just how it ended up. So if I want to have a dissertation, I have to travel to the source.

With the exception of one trip that hasn’t been scheduled, and could wait until fall, everything else that is happening this summer has to be done this summer. Or I will derail my timeline for finishing graduate school.

In graduate school, summer is a time to relax and recoup. Just kidding. Is it really? No, not at all. The summer after my first year of graduate school, I had a research intensive internship. The second summer I taught and studied for my first preliminary (comprehensive) examination. The third summer I taught and completed my second prelim. And this summer, I am teaching, will be traveling extensively in July and August, working on all things dissertation, and getting used to a new medication (Quinacrine).*

I’ve got nothing going on, right?

Anyway, as you probably already know, if you’ve been following me for awhile, I don’t travel well. No matter how hard I try, I tend to always come back worse for the wear.

For me, traveling is both physically and mentally exhausting. Not only do I have to contend with lugging suitcases, I also have to contend with the endless walks through the airport, the travel between where I arrive and where I’m staying, and all of the other things that go along with it; and my lupus brain also has to be functioning well the entire time.

At my last rheumatologist appointment, which I discussed in my last post, my rheum asked me if I am traveling alone. I know that this is his not-so-subtle attempt to inquire about my romantic life. YES, I’M TRAVELING ALONE. WHAT’S IT TO YOU, DOC?

But I digress. The reality is, though, that I’m not really traveling alone. And when it comes to chronic illness, it’s impossible to travel alone.

Not only am I traveling with my illnesses, and all of the literal and figurative baggage that comes with them, I’m also traveling with a cache of goods to help me be as successful as possible in not killing myself.

I’m planning to do a “What’s In My Bag?” post (or possibly vlog) once I get myself ready to do all of the traveling that I am doing this summer. But suffice it to say, I have been stocking up on everything I could possibly need that is carry-on size approved.

So, in answer to Maria’s question for the next edition of PFAM…

Um…my goal for the summer…Try not to die?

* A note about Quinacrine: While it is in the same class of drug as Plaquenil (Hydroxychrloroquine), Quinacrine is not commercially available in the United States. It is only available at compounding pharmacies, and because it is made up of only one active agent, my insurance will not cover it.


  1. Ok, about the new med - tell me more. Plaquenil was good for me until it started causing these weird burny headaches. So i've progressed up the ladder a few times towards the scarier drugs usually held aside until more disease involvement for various side effect reasons. I'd rather be on the Plaquenil for various reasons, but hate the burny headaches. What's the difference with your drug? Oh, and safe travels. You won't travel totally alone - we'll all be with you in spirit gal!

  2. I'd love to know more about that new med too. I've never been able to tolerate Plaquenil, and I'd love to try something in the same class that maybe I could tolerate enough to see if I benefited from it.

    Good luck with your travels. There are definite benefits and hardships to traveling both solo or with others.

    Don't be afraid to take advantage of services the airports can offer you -- like a ride to the far end so you don't exhaust yourself walking.

    Can't wait to see the "in my bag" post!

    Like Jessica says, we'll be there with you in spirit. We're all rooting for you, Leslie!!

  3. Jessica and Aviva,

    I will be writing a more detailed post about Quinacrine for HealthCentral, and will post the link here once it is up.

    And thanks for both saying you'll be there in spirit. That makes me feel better!


  4. So much going on! You have so much on your plate right now, I know it's hard not to be overwhelmed. And stressed. Of course, what does that lead to....well, we know.

    I hope you survive the summer with less pain, and find some time to relax.

    good luck!!

  5. Jessica and Aviva, I know you were both curious, so here is the link to my Health Central post, as promised:

  6. Just discoverd your blog. I was just diagnosed with both lupus and RA and am having trouble finding much info on the combo. I look forward to reading about yur journey.