My first infusion was okay, minus the lingering issue regarding whether Rituxan caused both peripheral neuropathy, and hyper-reflexia, or if I was already hyper-reflexive prior to the infusion, but nobody realized it because nobody had checked my reflexes in a while. The joy.
Tonight I’m recovering from round two. Considering this time last round I was in the middle of hospital admission for not being able to walk courtesy of the neuropathy and reflex issues, I guess this infusion went better. I’m really tired this time, with more lower GI pain and issues, but I went into it with those issues, so it’s not a huge surprise. What is throwing me for a loop is the depression. I knew I’d be limited due to the fatigue, and flu like symptoms, but I wasn’t expecting to feel like I was actually missing out on life. I took the time off of work, I’ve been working on filing for disability, and planning little things I can do that don’t put me into too much contact with other people until I know for sure where my immune system is at function wise. All of this, plus the guy is out of town a lot, so I should feel fine. I should feel like I’ve got all the time in the world to focus on me, and getting better.
But I can’t. I’m stuck in this pit of depression where I feel like an illness instead of a human being. Even when I’m not invited to an event, or couldn’t attend it had I been invited, I end up feeling like I wasn’t worthy anyhow. Why would anyone watt to be around someone sick like me? Love someone sick like me? My ex’s words haunt me just like my dad’s statement years ago that he was better off alone because of his health.
I say I’m positive, that I laugh through the infusion and crack jokes because that’s the best way to handle a stressful situation…but the truth is a part of me is angry. Furious, really. Life has handed me more bad cards than I thought could ever be possible, and it’s been one of those weekends were I just want to fold. There is one place I feel comfortable, safe, and content, but I can’t live in that place, and I can’t ask to be in that place as often as I’d like. I won’t elaborate, but it’s just what it is.
I wish I didn’t feel broken and disposable, those issues existed before Behcet’s, but Behcet’s has definitely exacerbated the situation.
I just want to be healthy. I’ll still be weird, but at least I’d be manageable weird.