It took me a few days to recover from my last infusion. It felt different from before. This time I was exhausted and had a killer headache. You know those ones that creep up the back of your neck? Yeah. And it lasted 3 days. Usually I’m good to go after a day and a half. So I consulted google and scared the shit out of myself (not literally in this case) with what could happen from being on remicade.
Obviously I already knew all of the side effects. I had researched it to death while I was in the hospital waiting for answers on what the hell is wrong with me and why I wasn’t responding to anything. But this time, experiencing a different side effect than just feeling crappy in general, it cracked me open. And I let that fear seep in and put a black veil over my life. Everything became negative in an instant.
I have this stupid disease and am going to have to deal with side effects and consistently feeling crappy for the rest of my life. . Tears of frustration and red were all I was seeing and I stormed about the house doing mindless things that would allow me to slam cupboard doors and take out my anger at this disease . And then I went to bed early and cried for a little while. Scared, sad tears. Crying isn’t my thing. My boyfriend came in and consoled me while I admitted I was scared. It’s scary. But things change all that time and we don’t know what they next medication is going to be. I’m not rejecting this medication. I just had a different experience this time. And either way, I’m still here and I’m okay. He reminded me that it’s okay to feel like that but if I just look at the bad what ifs, I won’t see the good ones.
So we played with the dog and I felt better in the morning.
I get really hard on myself when I feel bad about my disease. I was given this because. Just because. I don’t get to know why. And it’s not supposed to be a burden. It’s a gift (ha! #thingsIthoughtIwouldneversay) . See my last post for all the good things I’ve gotten from this disease. And who knows what good things are yet to come.
I have to trust in that plan that I can’t see and know that this is so much greater than me. I must be less. And I must give more. When fear creeps up on me like that it steals my joy. It steals the beauty of what this life has to offer. It steals my opportunities. It steals love and blocks out the light. It’s okay to be sad. It’s okay to be scared. Let the tears fall and be frustrated. This disease is fucking frustrating. I felt like that needed to be enunciated.
But those feelings can’t drive how I live my life. It’s not okay when fear steals my hope. Or my purpose. Don’t let fear steal yours too.
This is one of the main reasons I’m so excited for tomorrow’s hope warrior. Please keep your hearts open. And remember, tis the season.