I am NOT my lupus

“For some, tired is not just a destination at the end of a hard day or an irritating pit stop between activities, it’s a perpetual state of being.” The above quote was written in The Insatiable Tiredness I Feel by Kristiana Page. (Read her article here: https://lupusnewstoday.com/2017/08/23/lupus-fatigue-is-insatiable-tiredness-i-cant-shake/ ) I recently had a friend ask me what the “tired” part of my lupus is like. I had to think about it and fumble for awhile. For something that is such a constant in my disease, I would think it would be easier to describe. Maybe it’s so hard to describe because it’s something I always feel.  I even have my own classifications for my levels of tired. But even trying to describe THOSE could get quite tricky. So let me try to start with a broader grasp of the fatigue involved with SLE. I’ve done a ton of research for this post. One of the questions I set out asking has how many “Lupies” (that’s one of my favorite terms for us lupus warrior

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

     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, that fucking

"My face hurts." "It's killing me!! BWAHAHAHA!!" This is my family... So, I got 2 teeth pulled yesterday. I was super nervous while I was waiting. I just had to keep reminding myself that this was a necessity. This was important to my overall health. This was the first step in my journey to a pain free and beautiful mouth. (Which makes me think of the dirty line, "You sure do got a purrty mouth..")  I just kept reminding myself that I'm doing the right thing. Posting all of this stuff on Facebook has been pretty helpful. I have people giving me such kind words of encouragement. I asked my dentist yesterday to tell me something, even if it means lying to me. I looked at her and asked her to tell me that my teeth are in such a condition that getting this done is just as important as going to my Nephrologist (Kidney doctor) or my Rheumatologist (Main Lupus guy) or my Pulmonologist (Lung Doctor) when I had Histoplasmosis. She let me know that sh