May 6 2017
Pictures worth a thousand words
Usually when you wake up you can tell exactly what kind of day you’re going to have. I knew from the exhaustion I felt that today was going to be a rough one. Against every fiber of my being trying to cajole me into staying in bed, I got up; infusion day had arrived!
For those of you who do not know, I have been on medical leave since the 24th of April. My recent lab work showed a 17 CRP (C – reactive protein for inflammation) level. Standard range is 0-7. I have an inflamed colon. This mixed with some other unsavory symptoms had the doctors pushing for a higher drug dose. I typically get my IV infusions every 8 weeks, but due to the circumstances they wanted to pull me in at 4 weeks to get me correctly leveled. You know, after insurance got involved and approved this new course of action.
I have a love/hate relationship with infusion days. I know they will make me feel better, I know they will keep my major symptoms at bay, but needles freak me out. I am somewhat of a hard stick. By that I mean, during labor inducement it took two hours, an anesthesiologist, and an ultrasound machine to get me IV’d up. My first infusion took five attempts and a call to some pediatric god. Usually I can breathe through it, close my eyes and think of England, but the anticipation is almost always my undoing.
I had no idea what the day really had in store, but they say a picture is worth a thousand words, so here you go. A day in the life:
Some days you’re the windshield, some days you’re the bug. Today, I was most certainly the bug. I have been complaining about some symptoms, the typical stuff: not sleeping, nausea, gutting pain on my lower left side, reoccurring sores, headaches, etc. I have been complaining and complaining since August. I finally started getting some traction in December when I got fed up with my nurse and went to my GI doc instead.
Because of how erratic and different each person’s symptoms are, we have been playing the medicine roulette game. Until March, that is. I struggle every day. I hate being a pin cushion, I hate being everyone’s problem. I hate having no control. So again I went to the GI. That lead us here, to today. A new plan. New meds.
I will be going back on Prednisone, downing a handful of other pills, drinking a gritty bile binder, and using a cream to help heal the fissure. Nurse says if I am not feeling better between the new dose of Remicade and all of the above, by early next week, it’ll be colonoscopy time. From there, full image scanning. I should feel dejected, demoralized, and angry. To be truthful though, I feel invigorated. I mean yes, I feel the other stuff too, but I am a girl that likes a plan. Now I have a plan. Now I have the power to be the windshield.
Not every day will be sunny and not every day will have a rainbow after the rain, but these bad days…they have a role. They make the good days better. Laughter louder, hugs warmer, the world brighter. So maybe you’re the bug more often than not, to that I say, be the best damned bug you can be!