My anniversary is fast approaching. Not my wedding anniversary but the anniversary of my Crohn's diagnosis. It will be 14 years. There have been very few times in the last 14 years that I haven't been able to come up with something funny, witty or just down right hilarious about what I have been or am going through with this disease. Most of the reason for that is because I have some pretty hysterical people in my support squad - my husband Jay, my mom and Jay's mom. And for the past four years, my daughter has helped add to the fun. It isn't that they make fun of me - they help me cope. They help me deal with the realities of what I have to go through without it seeming so bad. They help me. I thank God for them.
In spite of this wonderful support every so often I come to the realization of just how much I hate my guts. This past weekend was two of the most beautiful days I can remember. There wasn't a cloud in the sky. There was a cool breeze blowing. It was a warm 80 degrees and so much sunshine you couldn't escape it. Being outside and enjoying life and the people in my life would have been great. But pain and diarrhea have a way of ruining that for me.
I had to leave my husband, daughter, youth group, church family and friends on a gorgeous day while everyone is playing outside because I'm was in pain. Those days may be few and far between but when they do happen I really, really hate my guts. When whatever is wrong with me (Crohn's, microscopic colitis, IBS, swine flu... the verdict is still out) gets in the way of my having a life it starts to wear on me after a while. Sometimes I just can't take it and want to stomp my feet and scream about how unfair this disease really is.
Maybe it's the fact that I am drained from going to the bathroom 10 or more times a day. Maybe it's the fact that neither I nor my doctors are even sure what is wrong with me. Maybe it's the fact that I have to watch while other people have fun knowing they don't have to worry about the things I have to worry about. Maybe it's the fact that I can't be a part of fun moments in my daughter's life because I'm stuck sitting on a toilet or laying on the couch in pain. Or maybe it's the fact that sometimes (and it's extremely rare) my support system bails on me and wants to play in the sunshine instead of sitting by my side knowing they can't do a darn thing to help me anyway. (And who can blame them? Not me.) Or, maybe it's the stupid prednisone side effects. Prednisone never gets blamed for enough in my opinion. But really, how much damage can 5 measily milligrams do anyway?
Whatever it is I am left feeling like a burden to my family and friends. I feel like nothing more than an incapable wife, a sorry excuse for a parent, the friend that can't be involved, the employee who yet again takes off work for another doctor appointment and a hopeless sick person who will never be able to do more than brag about how many times I have diarrhea in a 12 hour period. It's really hard to be productive from a toilet even when you have access to a laptop and wireless internet.
So today I am sad. It's just one of the realities of this dance I do with my guts. They may have won this battle but they will NOT win the war!