Saturday, February 15, 2014

I made it to the Benefit!

I had such a great time. Thank you to everyone who came out and supported us by volunteering, attending, playing. It was fun and overwhelming. I'm still recovering, my Myasthenia Gravis flared and I caught a bug so I am resting. For now...enjoy the pictures!

Sunday, February 2, 2014

"You look great today"...umm yeah...

Oh how many times have i heard those words uttered? Way too many to count... or you sound great, or "that's a handicapped spot!"...really? I didn't realize that when i put my placard up. Like i want to use the spot. Like i want to HAVE to use the spot. My entire life, I have struggled with the proper response to compliments. "Did I sound appreciative?" "I hope my thank you didn't sound egotistical." But now, with an autoimmune disease, I have no idea how to respond. Of course the first two words are easy...a simple "thank you." But then my mind starts I explain that it took hours of rest before i had enough energy to leave the house? Do I go into the intricate details of how i had to instruct my color blind husband where to find my outfit because I was too weak to go to get it. Do i let them know if I'm still in an hour i might look drunk... But I'm not, it's just my stupid illness. My Myasthenia Gravis? People, most people, don't want to hear all that. So, I usually just say "thank you" and smile my crooked smile. Then i sit and worry... do they think I'm not really sick? Was that a compliment or sarcasm? I don't want these thoughts in my head but there they are. Front and center. Most people, unless they've seen me during my many hospital stays or when I'm having a flare at home see the horrible disease this is too live with. I hide on those days. Somethings I can't hide...i can't hide my weight gain or bloated face from the prednisone. I can't hide my left foot dragging. I can't hide my eye when it starts to droop but I do try to hide a lot. That's what was on my mind today. I hope my post helps others not feel so alone.