So I’m still not quite used to posting about the crazy symptoms of Lupus, but this blog is for that exactly. This most recent flare I experienced was so very hard on me, on my body, my mind, and my overall well-being. This all started with the wildfire in November. For about a month and a half I honestly didn’t feel human after the fires… I have never felt so unnecessary to the world as I did in that time. Two of my biggest triggers have proven to be lack of sleep and stress. Needless to say after the fires I was stressed out. I barely slept and when I did I was crying myself to sleep at night in the arms of the man I now love so intensely. When I did manage to sleep at night I would wake myself up after not nearly enough time spent sleeping in hysterical tears. Missing my beautiful treehouse with every ounce of my life. I have never felt pain like I did when my house burned down. It was my first home. My sanctuary. It was mine and I had spent two years turning it into my dream house. Losing the house itself and all of my belongings was horrible, yes, but losing my home. My safe place. That was what really hurt. My life was thrown off track. Everything had changed. My flare took full swing and full advantage of my vulnerable state. A flare almost always causes me to develop a rash called a malar rash, [from Latin mala ‘jaw, cheek-bone’] also called butterfly rash. It is often seen in systemic lupus erythematosus (SLE) and presents itself typically across the bridge of your nose – it is also seen in other diseases such as pellagra, dermatomyositis, and Bloom syndrome. Usually the rash is confined to my face and neck, but this time it really spread to my whole body so intensely. Face, neck, under and behind my arms, my entire abdomen, under my breasts, between my legs, and on my hips. I’m not sure if people truly understand how hard these last few months have been for me, but I honestly feel like I’ve been to hell and back. (And again) I want to post these photos because I’m not sure that people really understand what Lupus is.
When I cancel plans or can’t go out, it’s not bc I don’t want to see you or I’m not interested. It’s because I’m in pain. You may find these too graphic, but think about having this on YOUR body and not being able to do anything about it. There isn’t a cure for my disease (YET) but I am doing my damnedest to get myself healthy. Sometimes that means I can’t go out after 7 PM – if at all. Sometimes that means I go to bed before the sun goes down. Just stick with me through this, give me strength when I am weak. For the first time….actually the first time ever, I believe that we can find a cure. It is 2017!!!! There has to be at least a start to the explanation of this crazy disease! Preparing for a lupus flare is like preparing for a blackout. Even when you are ready with your flash light – you realize your batteries are dead.
All my love, your favorite spoonie