It’s hard to express what it feels like to have a body that isn’t on your side. And I don’t mean that it won’t lose weight or that it’s achy or tired. (and I’m not minimizing those things but this is different) It’s that my body is literally trying to hurt itself day in and day out. It was true of mine with autoimmune disease. And it’s true of it now with my new organ. My body will never ever accept this liver as its own and frankly, sometimes it makes me mad.
Yesterday I was mad for a lot of the day. Just mad that I’m stuck with this lifelong burden of tweaking medications, being on edge, drawing blood, etc.
And then I feel guilty. Did I do something to cause this? Did I cause the imbalance that’s happening right now? And why can’t I just be thankful that I’m here and doing okay?
And then I was mad again. I take better care of this body than so many people take care of theirs. I know I’m not perfect and I know it’s not a competition… but I’m damn nice to my body (and now I’m laughing at myself because this sounds ridiculous).
I guess what I’m trying to say is that transplant is not a cure all, fix all. Don’t get me wrong, don’t think for a second that I’m not thankful. I’m SO THANKFUL every single morning that I wake up again. But it’s not easy to live a post transplant life. Even when things are “perfect” with your labs, you have fear. Fear of the next time or that you’ll get sick again or that you aren’t doing enough. Fear that you’re wasting your life, your second chance.
You compare every struggle to a health issue. “Yeah that guy cut you off but at least you’re alive, Amanda.” It’s so annoying. The way every inconvenience is rationalized by your inner voice like you’re not allowed to be upset about anything. Like you’re supposed to be superhuman because you almost died.
The things I feel and think are so at odds at what I know sometimes. I know it’s not my fault. I know. I know that I’m allowed to be angry and scared. I know that.
And I know I’m allowed to voice it so I’m going to. But I won’t lie. There’s fear in that, too. What will people think? Will they think I’m miserable? Ungrateful? Holier than thou?
Maybe they will. But maybe this will help me heal and maybe I’ll find I’m not the only one who feels like a mess so often.
This is me yesterday, tears in my eyes. These are the things no one posts for fear of judgement. Because it’s not Instagram pretty or fun or light. But this is me… when one little number in my body is off and when they up that medication and you’re just TIRED. You know you’ll be fine… it’s a blip in life… you’re strong enough to handle a lot more… but you’re tired. And that’s okay.
- Note for concerned parties: Truly I’m fine and my rouge number will come down soon, so no need to worry about my health. This is just me using one of my outlets. ❤