Let me count the ways...

One of the things I have noticed about living with Lupus, is that on a regular day I experience a myriad of painful symptoms so much so, that I even forget to document and write about it. Not only that, I forget to talk to my doctor about these symptoms. I think what happens is that in my mind I prioritize-what hurts the most? You know?

Yesterday I was writing about this severe pain in my bones/joints and when I was done blogging I thought to myself, damn my stomach hurts so much-I need to throw up again, and I drank a half gallon of Mylanta. When I shared my blog with my favorite Lupus group on Facebook, I added a question about stomach issues. I got so many responses from other women who were experiencing the very same thing I was feeling! When I eat, it feels as if the food just sits in my stomach like a burning ball of food that refuses to digest. If I don't throw up, I can't go to sleep. It feels as if my food just doesn't digest.

Why had I just ignored that symptom? I have been throwing up and feeling pain for over two weeks and I didn't even think about it! On any given day I have stomach pain, joint pain, a sinus infection, a bladder infection, and muscle aches. Can you imagine trying to talk to someone about this?! They think I'm a hypochondriac who has "everything" everyone else has! So, we prioritize, we compartmentalize, we leave out symptoms in order to be believed and taken seriously.

I often read posts that talk about people being very supportive about their illness, but I find that most people in my life, including my own husband, have what I call "Lupus fatigue". They are tired of hearing about all the things that hurt me. I see it in their face. I don't think they even mean to do it: their eyes glaze over or they even roll their eyes and automatically tune out. My own husband is sick and tired of me being sick and tired. I have now stopped talking to most people about the way I feel-even my husband. Sometimes I just sit in bed and cry alone and he will walk in and ask me, "what's wrong?" I feel like screaming, "Damn it! I have Lupus! Everything is wrong!"

I have to thank God for all the women, and some men, on the Lupus support group on Facebook that I am a part of because they are the only people who I can list the many symptoms I have without judgement. They get it. They understand. I think depression would have swallowed me up if not for them.