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…