Generally, I have a very organized post that I've written after some extensive thought and planning. I don't really have anything like that this week because a more immediate situation has taken over my life.
I began my Humira treatment on January 25th, after having been on an unsuccessful three months of methotrexate. At first, I injected (or, more accurately, the BF injected FOR me) Humira twice a month. On February 26th, my rheumatologist bumped me up to weekly Humira injections because my body still showed limited signs of responding.
Today is March 31st, and I am in more pain than ever. I literally stumble through every day of my life, and sometimes I struggle to stay the happy and positive person that my friends and loved ones have come to expect. When people say, as one friend did today, "What have you been up to?" I don't know how to respond, because what I'm up to is nothing more than trying to retain some semblance of myself through this dewomanizing, dehumanizing battle with my own body.
I didn't expect that I wouldn't be able to greet the oncoming spring with my characteristic joy. Around my rheumatologist's office, Humira has been touted as the miraculous treatment that immediately restores those sufferers who were unable to find relief in the less-harsh medication options. I guess I assumed Humira would be the "Superman drug" for me too.
So what do we do when our expectations fail, or when the superhero drug we have long awaited falls flat? I must admit to my friends, new and old, that I have not been the best at coping for the last few weeks. My positivity feels a little forced, and I can't quite muster up the strength to fight back at my disease some days. I want to be inspirational to other young adults who are suffering through some sort of chronic disease, but this week is not my week.
The key, I think, is that sometimes we can't be all hearts and flowers and positivity. It certainly helps to keep a bright mindset, but chronic illness is a serious and life-changing diagnosis. Sometimes, it will weigh on you very much. Sometimes, it feels like my RA is weighing down my whole life, as well as my body. So no, being happy all the time probably isn't realistic.
Pushing back is. Grim determination can often be the answer. I don't want to dress myself, haul myself out of the shower, or drag myself up the stairs, but sometimes I have to. I'm not going to be all happy hearts and unicorn farts about it, I just grit my teeth and do it. A lot of chronic pain is just doing it, because to fight back and assert yourself is better than allowing your illness to dictate your emotional well-being and your physical presence.
Living every day under the oppressive gaze of your chronic pain is a miserable, miserable place to be, but only if you let it feel that way. This week, I've been feeling suffocated beneath my pain, but I'm pushing back because I have to.