Once in a while I talk about being sick. Mostly I make snarky references to how much I hate Lupus. I even have a couple of hashtags I use regularly on twitter: #stupidlupus or #IhateLupus or even #LupusBlows. I try to keep it light because I don’t want to ever BE my disease. I’m not ‘Lupus’ I’m a girl who lives a full, productive, extremely busy life despite the fact that my body sucks.
Sure, we take a family trip to California every handful of months, and it looks awesome and glamorous but that’s just my family’s way of dealing with what is a horrible disease. My Rheumatologist, a woman who has saved me, practices in southern California so we make regular family vacations out of traveling to see her, to try and make it a little more fun for all of us.
It’s like giving a kid a sucker after getting shots at the doctor. The ocean tempers the suckage of it all.
This is how many pills I take a day. I know, it’s a lot. But don’t give me a talk about how I need to taper or take less or that you have some super special solution for me in the form of: essential oils, hypnotherapy, or some voodoo juice your aunt/sister/mother/best friend has used to cure their cancer/lupus/rheumatoid arthritis/degenerative heart disease.
I don’t want to hear it. No really, I don’t.
I’m managed by a huge team of doctors and am totally under control. This is just what it looks like for a day in the life of me.
I take pills the minute I wake up, and continue taking them all bloody day long until I go to bed at night. And it’s such a part of my daily routine, has been for close to 20 years, that I hardly even notice it most of the time.
Most of the time.
But for some reason over the last couple of months, I’ve been really sick. Not “rush me to the hospital” sick, just “I literally can’t get out of bed and hold my head up today” sick. And it’s horrible. Not just because I have a ton of stuff to do, projects to work on, jobs to fulfill, and a house to manage, but because I have two children and a husband who need me. They all need me and rely on me, and need me to be the force that holds us all together.
I can’t even begin to tell you what my husband does around the house. He does more cooking, laundry, cleaning, and child rearing than I do on a good day. That’s just how it is, and he’s a marvelous human being. I couldn’t function without him. He gives me limits, knows when it’s okay to push me, holds my hand when I cry, and comes to all sorts of blood draws and stupid doctor’s appointments with me.
Because he’s rad.
And my kids are little rock stars who get themselves dressed and fed and out the door in the morning without me doing anything but talking to them from my bed while they do it. It’s not pretty, but it works.
So once in a while, I’m missing from my blog. Like last week when I barely managed to throw up a couple of posts. It happens sometimes, and that’s okay. But every so often I’ll be hunkered down for days, maybe even weeks at a time in bed watching entire seasons of Grey’s Anatomy while I ride out the storm.
Just so you know.