The Butterfly: The Shape-Shifting Mascot

As a curious person I often rely on Wikipedia for my trivial knowledge, but when it comes to lupus, I love my straight up medical facts. One thing I never questioned, but never knew the answer to is trivial but wiki wouldn’t do- why a butterfly?

The symbol for lupus is a butterfly- An animal that is symbolic for rebirth, renewal, and transformation. Or- is it because we get this hideous Malar Rash across our faces (exhibit: a). And so, through my research I learned some new lupus trivia, such as, yes- it is because of the rash.

And hello- I share a disease with Millie “The Most Famous Dog with Lupus.” Question: Who is the most famous cat? 

So while I’m not ready to abandon my negative feelings towards my views of the butterfly as our symbol (it’s a shape shifting creature that has a short life span. I can’t jive with that.) I do feel slightly more knowledgeable about my own disease. Now, who is down to have a new mascot? I nominate the wolf (lupus meaning wolf!)– now that’s an animal I can feel strong and proud to be represented by!

Reynauds, Snowboarding, and My Fridge

Winter holds no purpose of existence in my life. This is coming from a New Yorker. The only reason I started snowboarding was due to my extreme hatred of this time of the year- yes I realize how ridiculous that sounds, but I needed to make myself look forward to the season in some way. For years I would get a season pass, or go to Killington, Vermont for a few days to get my fix.

Then my mom stopped paying for things.

Snowboarding, and I’m sure skiing too, but I was too cool for skiing when I was sixteen, is very costly. Board, bindings, boots, jacket, pants, goggles, helmet, and other gear and you’re totaling up pretty high- that was like five separate Hanukkahs right there. One lift ticket back in 2007 was $65, and currently it’s $90. And like I said, my mom stopped paying for things- she was like, you are 26 and have a job.

It has been six seasons since the last time I went snowboarding. Many people say “it’s just like riding a bike.” The last time I had to relearn how to ride my bike I crashed into a bush and an old man asked me if it was my first time. So I’m calling bull on this one. Unless it is like riding a bike and I’m going to crash into a bush- that’s a more likely scenario.

Last night after an impromptu friend gathering we got to talking about a February ski trip. If you have been following my blog for a while or you know me personally, you know I act on impulse. If it sounds exciting then and there, I am in, and just like that, check made out and signed. We are going to Vermont! I was so excited that I broke out the old gear. And by breaking out I mean trying on. And spinning around in my living room… as everyone else was normal and sitting on the couch.

There she is. Making a guest appearance with my fridge. Which is giving all of my friends a guest appearance. And the Mets- that’s not my doing, it’s John’s fault.

And while I’m super excited to hit the slopes, I’m also slightly apprehensive. Lupus people or anyone with Reynauds understands how complex a relationship can be with cold weather. And just like that, an exciting hobby can be scary- Reynauds causes me to lose circulation and feeling in my extremities. But it’s because of lupus that I’ve given up so much in my life, and while I take it seriously I can’t allow it to take away the things that make me happy anymore. So lupus, screw you, I’m going snowboarding!

Any suggestions as to how to deal with the cold weather to protect my fingers and toes?!
Runners, I’m sure you have some tricks.