Often times I choose to say I’m fine. I find it helps with facing the actual truth of dealing with this whirlwind of drifting, surviving, and rising through the trauma of an illness there is no cure for. My immune system is gone. It doesn’t exist anymore. Not even in the slightest way.
Monoclonal therapy is looking like what’s behind door #3. I have my first Rituxan infusion today. I’ve exhausted all other options. At least that’s what my doctors tell me. I have my next infusion scheduled for two weeks from now. Crossing my fingers this IV drug is the one we’ve been waiting for!
Illness, it can change everything. It can take over your life and consume your daily activities. I don’t want to have limits on what I can do. I know if I go outside to check the mail and come in I’ll break out in hives within seconds. I know if I take my sweet puppy to the dog park then the next day I will be so exhausted and feel like I’ve been hit with a truck. The palpitations are annoying, but they’re a part of my daily routine now. I can’t hold a cup of coffee without using both hands. At what point did this become my life? I’m mentally not accepting what’s happening and I fear that’s partly in response to failing every single therapy drug on the market. I desperately need something to change.
The waves of deciding to actually do something productive verses staying home and lounging around doesn’t stop. I often hear of people who are in remission and have very little disease activity. I wonder what that feels like. I imagine a day when I can do all the things I did a few years ago without hesitation or fear.
This is not my life and this is not me. That’s what I tell myself. Reality is a slap in the face most days, and that’s ok, because it means I’m still fighting for myself. Guilt can make a girl go to a dark place. Hope can pull her out. But I can’t figure out how it works with denial. That’s the one thing I still have an overwhelming issue with. Faith takes over and provides me a safe place.
I’m not finished with you yet, diagnosis. You don’t get to control everything. You can’t take over my positive thoughts and push me all the way down forever. There is light at the end of the tunnel. Even on my hardest days I wake up. I get to tell my teenager how much I love him and how grateful I am for him. The sun will still shine after a storm. That’s one thing I am certain of.
Infusions are not something I want to be doing, obviously. I never chose to sign up for an illness with no cure, but here I am. I am blessed to be able to get this treatment, there are so many people who don’t get that opportunity. So I’ll sit here in this dark cold room for as long as I have to and pray this is the one IV drug that doesn’t get away!
Hey Rituxan, ball’s in your court!