Wednesday, February 29, 2012
So that's my arm around 2:15 pm today. Infusion day! I maintain that I do some of my best thinking while waiting. Waiting for drugs to come into my system, waiting for doctors to see me, waiting for a red light.
I have come to peace with the idea that I need medication to live and function and will for my entire life. When I was diagnosed, optimism prevailed, and I believed I would go into remission. 21 years later, it seems that hasn't happened.
I'm not a pessimist, but I'm pretty sure the math supports me in my current lack of faith that I will go into remission someday. So I look for ways to learn, understand, communicate and share how this disease has impacted my life.
I have been listening obsessively to a band called Young the Giant and their song "Cough Syrup". I can't get the lyrics out of my head. Here is a small section:
"So I run to the things they said could restore me restore life the way it should be
I'm waiting for this cough syrup to come down.
Life's too short to even care at all.
I'm losing my mind, losing my mind, losing control."
My cough syrup is my arthritis meds. Sure, the meds I take are a little more potent and carry a few more warnings: may cause cancer (Actemra), may cause hair loss (Methotrexate), may completely alter your personality (Prednisone).
This song really speaks to me. I am waiting for the cough syrup to come down, I am waiting for my meds to work. I have been waiting for this for a long time. I feel like I am losing my mind and losing control at times. I have run to the things "they say" could restore me and restore my life - all the medications that I have taken over the past 21 years as listed in Dinosaur Drugs. And then some more.
I have turned out to be a positive person, despite all that has come my way. Only someone with faith, hope, sheer optimism or a combination of all these things could possibly keep taking meds in the hope that they will feel better - twenty-one years later.
My cough syrup is pictured above. It's rather expensive ($35 CDN per minute) and I am still waiting for it to go down. And work.