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Last night I was gifted a new nick name- Mrs. Holliday. The two l’s are intentional. Dave felt it was a great moniker for how I sounded while hacking up a lung and still drinking up at the bar.
It was an impromptu get together of old friends and new and a tiny cough was not going to keep me away.
Certainly not as I had pressed on over the last few weeks on the wings and the prayers of steriod injections and double my daily steroids. I know, doubling them up isn’t smart but it was just to get me through these really tough holiday weeks. It helped me to hide how badly my body was yelling at me to stop.
BUT I have no time to stop. I have family I love, kids who need me, friends I adore, a career that fulfills me. I have high school basketball season to cheer through. Finals to help study for. Doctors appointments that must be managed. Many, many of those.
You get it. I know you do. All of you have your families and lives that must go on.
And just when all seems to be on the upswing I wake up with an ugly harbinger that the lupus knows I have sold my soul too long and it is come to take it’s due. The lumpy, itchy rash on my arm is the mark of the dark Lord of Lupus. It’s a small warning that he is always watching. Tricks and techniques may bide me time and make life a bit more normal for the short period. But I will always pay. A rash means the SLE is getting into the skin, a cold sore is an attack on the mucus membranes, a large amount of hair on the bottom of the shower is alopecia making its way in, or I guess that would be out.
I know all of this. But it doesn’t make it easier, this play now, pay later, lupus like karma. I don’t think that wanting to see your kids game, or volunteer at the Food Bank, or have a lovely night with friends should COUNT as being worthy of later let downs in your health.
It isn’t fair. And I am mad. Actually, not mad. I am pissed. I am not going to stop having parties, or going to a late basketball game, or lifting my son into the car so we can get out for some fresh air.
Dammit. I’m not. Lupus can suck it cause I am one feisty momma with some tough old stubborn Irish genes. And it isn’t going to scare me into a life of chronic illness just yet.