It’s been very, very difficult for me lately.
After spending nearly a week in the hospital last week, and having my appearance change dramatically in the meantime, I don’t want to be out in public. I already know I look bad, but then having people you know actually see you swollen and looking like crap is another thing.
I know I did a lot of FB Live videos (which you’re probably saying what’s the difference?), but you can’t see my whole body in the videos and I feel like I look way worse now than I did then.
Brody had a t-ball game on Saturday and I wasn’t going to miss it. I missed the first one but I couldn’t miss this. Klay had gotten up early and taking Brody to his Tae Kwon Do class, grabbed some lunch, and was heading back home. I couldn’t really get ready by myself because my mobility is so bad. My stomach is still massively bloated and putting on clothes literally takes my breath away.
I was bawling while trying to get ready. Every time I looked in the mirror and saw this giant swollen face that’s almost unrecognizable, I just couldn’t handle it. Meanwhile, Klay is trying to get the boys ready, himself, and now his wife? I feel terrible for him.
I couldn’t put my hair in a ponytail because my arms won’t go up that high, and if I do get them up there, they won’t stay long. Klay had to put my hair back and I grabbed a hat, and put that on. I went to find some big sunglasses that would hide most of my face because I couldn’t put makeup (I didn’t have time, plus I didn’t want to look at myself in the mirror).
That morning, I’d been coughing and running a fever the night before, and my sinuses were really really bad. I had the worst headache, and all around I just felt terrible. I wasn’t sure I could do it. But dammit, I was going to go to that game. I couldn’t miss another one. And, this time I was home, so I had to try for my Brody.
I just feel myself withdrawing from everything and everyone. If I hadn’t already missed a game, I don’t know if I’d have gone Saturday. I was feeling that bad. And I didn’t want to see anyone or talk to anyone.
And of course, they are doing construction on the parking lots, so it’s a super long walk to the fields. I honestly didn’t know if I’d make it there on foot.
And to add to the fun, once we got there Beckham was a mess. He always is when we’re out. He’s crying because he wants Gigi (my mom) or Klay, I can’t hold him or console him ‘cause if they are around he wants nothing to do with me. And of course, I can’t pick him up so that doesn’t make things easier.
I did make it out to the game but completely lost it when my sister came up to me. I look and feel so terrible, and I don’t want to feel like this. I want to be able to watch my son play t-ball and enjoy it. She immediately started consoling me and saying “hey, you’re here. That’s something.”
I know she’s right. I just honestly thought things were getting so much better (when I started feeling more normal last year), and I thought after the surgery to remove the blockage I’d feel different, but things haven’t gotten better. My body honestly hurts more than it did before.
I look at my hands and my arms and see the change in texture and the rippling edema that comes with GVHD. This has to get better, right?
I try and try to change the way I’m seeing things, but right now, I can’t help but feel defeated. My life isn’t a life anymore. It’s a bunch of people taking care of me, and me having to watch. I feel lost, withdrawn, not connected to people anymore.
My heart is broken into a million pieces. I feel like I don’t have anything anymore—nothing to give, nothing to offer anyone, nothing to share. I really thought I was getting better and this just happens, and I can’t function. My mobility is so bad, it’s impossible to try to get around the house or do anything productive. I’m useless.
I was walking by the fridge and saw these old photos of me and Klay. One was from high school and some from Alaska. I looked at them and thought “that was a whole lifetime ago” and I never thought my life would be what it is now. I’m never going to be her again. Be that Cass. She’s gone. Now, I just kind of look like her. But I’m definitely not who I was before all of this happened. My life has been stripped of the things that make life worth living for.
Yes, I still have my kids and a husband who loves me, but I can’t help but feel like they know that I’m just weighing them down. And that’s what I’m doing—everything is about helping mommy or doing something for me or making sure I’m OK. I should be doing that for them. And, I can’t.
I don’t want to be like this forever. I can’t be.
That’s what’s terrifying. I know I’m supposed to take this one day at a time, but I’m in so much physical pain that I can’t think about anything besides feeling better or if and when that may happen. And, it may never happen.
My husband, my kids, my family, they all deserve better. I can’t provide them with a “normal” life and that kills me.
I just need to get some relief soon, everything is hurting—my heart included.
Hoping to catch a break,