Tuesday, October 20, 2009

It's Called Lupus, Stupid!

I learned a very important lesson on my (first ever) trip to NYC… No one talks to the girl wearing a mask on the plane…

My doctors in the hospital said that it was up to my PCP to clear me on Thursday to travel to New York on Friday. She told me that as long as I felt comfortable being away from my doctors and wasn’t feeling ill at ease, she thought I was fine to go, and left the decision up to me.

The one thing she did request is that I definitely wear a mask on the plane. Although I did not love the idea of wearing a mask, and have avoided it thus far, I felt like it was a small price to pay to be able to travel, given everything that I’d been through the past week.

As it turns out, not much to my surprise (but to my disappointment), people are afraid of people wearing masks. The guy sitting next to me on my flight from Detroit to Chicago never said a word to me, and this continued on my flight from Chicago to New York, and then again on the way home. Four flights, no conversation…

I did not wear the N-95 masks that I had bought (but did not wear) on my trip to San Francisco, as I tried it on for about two minutes, and it was ridiculously hot and uncomfortable. I purchased some regular hospital masks, like I had to wear while I was in the hospital. If that type of mask was good enough for the hospital, where germs undoubtedly abound, it’s good enough for being on an airplane. It’s the type of mask that has a flexible band at the top to fit to your nose, but is soft, and not unbearably hot to have on for almost three hours.

In the end, I was glad that I wore the mask because there were a lot of coughers on all four of my flights. I think it would be nice if the people who are acutely sick would wear masks instead of the people who are trying to avoid getting sick. But that’s the way it goes, and as I said, a small price to pay to be able to travel with some piece of mind.

Although this wasn’t a stress free trip by any means. When I got to Chicago on my way to New York, my flight had been cancelled due to rain. I was able to get a flight out two hours later, but it would appear that my bag went on a non-existent flight and arrived in New York when my original flight was scheduled to. If it wasn’t enough that United lost my luggage on my way to New York, when I was getting on the plane back to Detroit, the person scanning tickets (having seen me don the mask a few minutes earlier) said, “Welcome aboard, Dr.” I wanted to punch him in the face. People behind me started laughing. Like it isn’t hard enough to have to wear a mask without people making fun of you? It would be great if these airport personnel could actually stick to doing their jobs, and not make life more difficult for passengers. (Luckily my medication was in my carryon and not in my suitcase, which as of now, seems lost and gone forever)

I was really tempted to write “lupus” on the mask and wear it around, but not enough people know about lupus or understand it, without that being potentially more stigmatizing than wearing the mask itself. So, just to make myself feel better, I did write “It’s called lupus, stupid!” on a mask, but didn’t actually wear it.

I think the message is at least as much to others as it is to myself. As I said in my previous post, lupus isn’t small beans. The illness is real and so are its consequences. I learned this first hand with the vaccine debacle and subsequent hospital experience, my first as a patient with lupus and rheumatoid arthritis (actually, my first “real” hospital experience since I spent four months in the hospital as a premature newborn).

Lupus causes you to do things that you wouldn’t normally do, or other people don’t have to do, like wear a mask on a plane. I went to the NBC store, hoping they had a House t-shirt that said “It’s Never Lupus,” but they didn’t. I totally would have worn that on the plane.

Despite having to wear the mask and the fact that United lost my stuff, I had a fun time in NYC with one of my really good friends. I got to see Rockefeller Center, Times Square, MoMA, Fifth Avenue, and many other sights that I had only ever seen on TV, which was pretty cool. We also got to catch up and fill each other in on the last few months of our lives. It was definitely nice to get away, although I may have to pick a warmer destination next time…

I guess this trip made me realize how unprepared and in denial I have been about my illnesses. I purchased a small binder-type system (while I was in New York) that I can put all relevant medical information in, that I plan to have with me at all times – this includes doctor names and contact info, medication list, people to call in the event of an emergency, etc. Because I felt awful that some of my good friends got their information about what was happening to me via Facebook, rather than directly from me or my family. But I think that no matter how prepared you are, you’re never really prepared enough, whether physically, emotionally, or both. And lupus will do that to you…


  1. I'm so glad you wrote about your experience with 'the mask' - I've been wondering and stressing about it not knowing how to handle the situation myself. Although I'm a little perplexed at how a flight can be cancelled for rain (I am an Oregonian, after all), I am glad you had a great time. Yes, Leslie, you earned this adventure!

    Welcome back!

  2. if i had known you were going to have a layover in chicago i would have offered to come and hang out for a bit! i'm sorry people were shitty to you about the mask but it sounds like it was the best option to help keep you from being sick. i have a potential job at a preschool and wonder how my body will handle 20 germ carrying 3 year olds this winter! the binder seems like a really good idea! have you considered getting one of those medical bracelets? i think i'll be getting one before long just in case. i ride my bike in the city and you never know what could happen. i'd want any medical personnel to know that i have celiac disease right off the bat. good luck filing your claim with the airline and maybe you need to make yourself a t-shirt!

  3. I think it's great that you took this trip (and had an adventure!) in spite of having lupus and RA. That's brave and it shows how tough you really are. Too bad people were weird about the facemask, though I think maybe the guy at the ticket counter was joking with you a little, not trying to be mean. Of course, the tone in a situation like that can make the difference.

    Anyway, good on you! I think a big part of dealing successfully with these autoimmune diseases is staying determined to keep on living and enjoying ourselves as much as we can. Big journeys are wonderful, but the small gifts in life can be just as uplifting.

    Glad you had fun! Thanks for writing about it. And by the way, we share a first name! :o)

  4. Maria, it certainly was an interesting experience with the mask. I don't know why the flight was cancelled due to rain, either...

    Jenn, my original layover was only a bit over an hour. I wish I had thought about that once I had to stay longer. It would have been fun to see you! I have considered a medical ID bracelet. I guess there's just no avoiding that I'm sick then, huh? Oh, denial is a funny thing. Anyway, good luck with the kiddies - and hopefully the next time I'm in the C, we can get together!

    Rheumablog, I think you are so right about celebrating both the big and the small. The whole mask thing was really touchy for me, but I made it through. That's almost a bigger step than taking the trip, itself. And there is definitely a time not so long ago that I don't think I would have been courageous enough to travel by myself. Thanks for reading!

  5. Just a thought from a former flight attendant - if you were flying into La Guardia you may have been cancelled if the rain was really bad b/c it's an very short runway that's pretty much ending on the water. They cancel easily there due to weather. Also they space the flights out sometimes a bit more making the traffic situation slower which can cx a flight too.

    I'm sorry that people were a bit odd with the mask, but glad that it worked out for you. Those airplane germs can be quite nasty!

  6. Hi there
    Um I seldom talk to people when I am on a plane - mask or no mask - perhaps you were sitting next to

    I recommend visiting Tokyo sometime if the opportunity ever comes your way - another fab city as New York is but there is lots of mask wearing by almost everyone (for lots of reasons). Seven-eleven stores sell them they are so common...

    cheers muchly

  7. hey there! I share your name :) Maybe with so much swine flu going around people are more concerned when they see someone wearing a mask but what is funny is that its the people who are sick and not wearing the mask that you need to worry about! I think everybody should wear a mask on planes at all times! it's such a breeding place for airborne germs!

    I admire your strength and your red hair :)

  8. Found your blog through Healthcare Blogger and have enjoyed reading your posts. I have lupus too. Would like to add you to my blog roll, if that's okay. Aren't we lupies special? :) You're right in saying that lupus isn't "small beans." And don't ever feel out of place wearing masks or doing whatever it takes to protect a compromised immune system.
    Stay strong!