I am NOT my lupus

So true. Most of the time, I pretend I don't hurt or that I'm having a good day. I hate feeling like I'm not pulling my own weight and I hate even more being made to feel like I'm lazy or making it up. So I lie. Often. I say I'm ok, when really my body is SCREAMING at me in one way or another. My hips hurt so bad sometimes, just walking or sitting down or standing up is excruciating. Sometimes, my head is pounding and I don't want to say anything because just a human's voice can make me want to cry. Other people shouldn't be forced to not listen to music or carry on with their day because I hurt. And sometimes, my vision gets a little funky and my balance is a little off. But I say nothing. It's funny that I can be such an advocate for speaking up and being open about Lupus so others can gain understanding and raise awareness. But I'm afraid to speak up to my own family or doctors about what I feel. I even understand that I'm not always

So, I recently joined a couple of groups on facebook. All of them Lupus support groups. And I'm undecided about how much good they're doing me. I like that I can read about people suffering some of the same symptoms that I do. But then I get online and see people that have it so much worse than me or know so much less than I do and my heart hurts for them. When you're living in the clutches of this disease and your life seems like it's one flare after another, it's hard to find which way is up. And for a lot of us, even a few years after diagnosis, it's hard to remember all of the crazy ways this disease can churn us up. I've learned a few things that have been awesomely helpful. The rashes that I get on my arms and chest instead of the butterfly rash is not uncommon at all. Apparently, kidney involvement is NOT AT ALL rare. Me getting shingles in a place that was mistaken as genital herpes has actually happened to others (HOLY SHIT! FOR REAL?!?! I'

Hello! I've been trying to figure out how to write up all of the amazing experiences I had while I was in Europe. There's just no way to write everything down. There really isn't. We had such a great time and experienced such awesome and odd things, its hard to imagine putting them all into words. So here's how I think I would like it to go. I think I'm going to sit here and try to make some bullet points of blogs I'd like to write. Food Amsterdam Paris Brussels Travel Accomodations Cultural Differences Navigation/Travel Tips (Google Maps, etc) Other Photos Lupus' effect on my trip or my trip's effect on my lupus 1. FOOD Duck at Toucan Cafe Duck at Le Carreu (Sp?) Food on planes Sandwiches Daily Fresh Coffee Crepes Belgian Waffles Lack of Corn Syrup and Artificial sweeteners Grocery Shopping 2. AMSTERDAM Elevator Rainbow off train Luggage place Canals Bridge hunt Van Gogh Museum Rijksmuseum A