Manic Monday

So today felt like a whirlwind. Mondays always do because its back to a schedule and having someone at school by a certain time. I used to be a kindergarten teacher, so this isn't that foreign to me, but now that I have an autoimmune disease, getting up in the mornings always seems like a chore. I'm never ready to get up, much less at 7:00 (which isn't horrible, because my 2 year old is an early riser and it hasn't been until lately that we get to sleep past 6:30)....but I need my rest...and it's not even beauty rest, its just necessary rest. I haven't felt beautiful in years. I'm on daily doses of prednisone and I've gained 20+ pounds over the past five years...and it doesn't look pretty on me. I'm small-framed and twenty pounds feels like a lot. I can't stand the look of my own body. I've also developed discoid lupus since I've started my Benlysta infusions, so now I have round sores that look like ringworm and leave scars! Sounds great! Seal, Heidi Klum's ex, his face is scared from discoid lupus! Scars might be hunky on a man, but on a woman...not so sure.
I told my husband last night, I thought he would be balding and fat at an older age.....I never imagined I'd be bald and fat at 32 (Chemo and steroids!!! What a combo)! Lupus is a kick in the butt, everyday. I have to suck it up, not complain, and act like I'm fine. Sometimes I get tired of telling friends that "I'm fine" when they ask how I feel, but I wouldn't dare to say how I really feel. Who wants to hear that? So I'll continue to say fine....I have great friends, and I'm sure they wouldn't mind if I vented, but I do. That isn't who I want to be. I want to be strong and continue with my life and only validate what is important and life changing..not talk about how much I hurt or discuss my new symptoms or my progressions. I want to ignore my disease and continue to be ME, the ME I was before Lupus. Because that's really who I still am, only now I have a little bit more of a daily struggle. I have a little reminder of what I should be thankful for. Each day I hurt, I am grateful. I am grateful because my children are healthy and because I'm still here to be with my family. And that on most days is enough.