Infusion Day

I had my infusion today. The double dose, 600mg of Remicade. I was less sad this time, as I didn't go alone. For some reason whenever I have to go in for treatment I feel very, very alone. Even when someone is with me. Even when I have family and loved ones calling or texting to see how I'm feeling, how it went. I feel very alone, and very sad. And then I lie on the sofa, with an achy arm, exhausted and praying that this will be the dose that makes me feel better. And maybe it will.

It's a funny thing, this melancholy. I really am not the sort of person who gets into a funk. But there is something about the day when I have my infusion that makes me feel so very sad and alone. And since Adam died it's a feeling I've gotten more used to. Like grief, you sort of learn to live with it. Like that crazy roommate I had in college. I'd rather she wasn't there, but she was, whether I wanted her to be or not, and so I accepted it. I did my best to avoid her and put up with her when avoidance was not possible.


I'm sure it is a combination of the helplessness I feel about being so sick lately. And now with this new diagnosis, it feels more difficult. I feel like my body has completely betrayed me. And I don't want anyone's pity, and I don't want anyone to worry about me, because hey, as my dad would say "It's just another fucking growth experience." And I'll come through this, as well. And there are days, entire days sometimes, when I feel really good, and I think to myself that maybe this new combination of medications has finally kicked in and I'm getting well, but then the next day I can't walk properly. I can't drive more than 10 minutes without my knees or hips giving out. I can't stand up straight because my back hurts so badly. I try not to feel discouraged. I can live with this. The way I am now, I can live with this. It isn't the ideal way to live, but there are worse things, as I've said before. No one ever thinks they're going to be widowed before 30 with two fairly uncommon, very painful and often debilitating diseases, but it could be worse. I don't have anything fatal or contagious. I have lost my love but I have not lost the capacity and desire to love and be loved. We only have one shot here. At least I think we do, though I do think reincarnation is possible, let's just say for the moment that this is it, this is the only shot we get on this earth. I will move forward, even if it's at a hobble. Because that's where I'll be spending my life, however long I may have.

So to quote Edna St. Vincent Millay,

My candle burns at both ends; it will not last the night; but ah, my foes, and oh, my friends - it gives a lovely light!