Yesterday afternoon I was sitting at my desk and I see the familiar MSN messenager button pop up from Gess and I see his one word message "Fcuk" (he has clumbsy fingers :)). Immediately my heart sank and I knew what was happening before he said it. Bleeding. Again. 4 days after being released from the hospital. He tried to explain why it happened. Walking up a hill. Ate a huge lunch. Behind a smoker. Exacerbation. Only a couple teaspoons. But, really, those qualifications don't matter. He wasn't running a marathon. In fact he wasn't running at all. He was doing is "normal" work routine. This is the pattern that we have seen. He will bleed. Usually start out small, then it gets bigger, or it happens more often, or some combination thereof. He went to the ER last month because of bleeding. Then was admitted last month. Then again this month. So what's next? More bleeding. I am scared that at some point is it going to be so big that it won't stop. I am scared that he is going to end up on a vent again. Or, maybe even worse, that they tell us that there is nothing else that they can do to stop the bleeding. Then what?
I am trying to be as rational and calm about this as I can, but honestly, it scares the crap out of me and frustrates me to. I am tired of hospitals and doctors and home health people. I feel smothered by them and all I want is a little space to breath. Ironic that I just said that, considering it is my husband's lungs that I am talking about anyway.
There are days like this when I just wish that we could have a few "normal" days. Days when I didn't think about CF a hundred times and when we could just be a regular married couple. Not one with death looming in the shadows. And then I feel selfish, because my husband is the one that has to feel this disease taking over his body, not me. But when I think about it, it does take over, just in another way. It doesn't manifest itself in thick mucus building up in my lungs, but instead in many other ways. I have been told by more medical professionals that I can count that I am too stressed. I get that. But how do I fix that? This disease is taking me over too. Not in the same way. But it is there. I am scattered and frazzled. Jumpy. Afraid that at any moment I am going to hear a thud and my whole world is going to come crashing down. I walk on the edge, wondering where I belong and how I will be able to make it. And then wonder what "it" is.
For now, there are no answers. Only little steps to get through the day. A cup of coffee. Lunch with some old co-workers. Work. The gym. Email. Homework. I will push thoughts of more out of my mind and focus on the next little task. Keep the focus as long as I can. Try not to long for the break that I know I need, but doubt will ever materialize. But, keep a tiny sliver of hope, because I need it.