Someone asked me today if I felt so lucky to have my j-pouch at the risk of sounding completely negative, rude and ungrateful, I answered, “not today.”. What the hell kind of answer is that, Brooke? I mean really. You were dying. Literally, wasting away and bleeding to death. You could barely eat, drink and speak. You weren’t expecting to see your kid turn three and now he will be five in a few weeks and you’re here. I know all this. Logically I am forever grateful and indebted to God and they way he worked it out for me to live. And for the most part I live everyday trying to pay it forward. But today, today was just one of those days when completely felt organ-less, different, disabled and NOT CURED!
My remicade infusions are coming along. There are days I feel good. I don’t dread opening my eyes to the searing pain in my back, stomach and eye anymore. Things are coming together. But today as I deal with poor vision in one eye, uncomfortable irritation in my anus, too many bathroom visits and major major fatigue, all while trying to entertain the kindergartner who was home on holiday…I can’t help but get irritated. I’m so tired of feeling this way. So tired of having to think about everything that has to do with me, Jaxon and how all of it affects everyone and everything. I hate not being able to tell someone just how much it hurts without someone looking uncomfortable or trying to give me a solution by telling me to relax or change my diet. I hated being too tired to spend Jaxon’s day off in the sunshine or at a museum because Mommy didn’t feel well. I hate that he has to have a single mom AND a sick single mom.
Today was a bad day. Not because anything major happened or didn’t happen. There were no fights or major catastrophes. It was just not a IBD-less day. And sometimes I just need those to happen more often than not. Sometimes I’d like to not be tired or in pain and just have to worry about mom stuff. I read that another man died of Crohn’s yesterday. He was in the UK. Young and married. That could be me, so I should be grateful and I am. But today…today it was a little harder expressing gratitude. But I think that, that’s okay. It’s okay to take a day, get the frustration out and move on. Tomorrow will be different. One thing I have learned about living with an autoimmune disease is that one day you’re crawling on the floor and the next day you could be leaping across. Tomorrow…tomorrow, I think I’ll walk.