I am NOT my lupus

I recently have become fed up with a particular topic surrounding Lupus.  At this point, it seems to take over message boards, social media groups, and support groups. It didn’t always seem to be this bad. There was a time that people would talk about their lupus symptoms and more than half of the responses DIDN’T involve this topic. I’m not kidding. And it went from a gentle suggestion to almost an absolute shall. Sometimes, it just gets my back up. So what is it, you ask? What could possibly be so prevalent and so generic that it could “apply” to every symptom, every question, every concern? Diet. Fucking FOOD. So there will be a ranting…. For every post discussing someone's symptoms or concerns, there's someone that is going to post a comment telling that concerned person that a plant based only diet or a keto diet or a no carb diet or a freaking dandelion diet will "cure" lupus. Rarely does the commentor say "I have found that _____ has helped ...

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...

     Oooookie day. That hurt. A lot. On Wednesday, the dentist took out the two teeth farthest in the back on the bottom right. That actually went fairly well. The numbing stuff worked instantly, the teeth came out pretty easily. And the pain wasn't intolerable. I should have known it couldn't last.      Yesterday was not quite so nice and easy. She took out the back two on the top on the right. The first one was mostly ok. It was almost down to nothing in my mouth so she had to wiggle and push to get a purchase point on it. But it came out. However....the next one was an asshole. The root was SUPER long. She had to wiggle and pull and twist. Apply MORE of the numby stuff. Wiggle, pull, twist. Numby stuff. And repeat. And repeat. And repeat. You get the picture. She had to put so much numby stuff in my mouth that she couldn't put any more. And towards the end of pulling the roots out of my eyeball (or so it seemed) the numby stuff just wasn't enough. Man,...