It has been one of those incredibly long days that make me want to crawl into bed and pull the covers up over my head.
Today’s bloodwork and heart biopsy mean my life revolves around numbers as I wait to hear if my rejection level has changed from a 1A and if my CMV viral load has decreased from 3200 with the therapeutic dose of valganciclovir I’m on.
I am tired of dealing with this crap. I am tired of ganciclovir in any of its forms. I am tired of being told by doctors that I am unique because being medically unique in my experience does not usually have a positive connotation. I am tired of my life riding on numbers, worrying what will happen next if one of those numbers isn’t where it should be. It’s exhausting. It feels like the most important things in my life, the ones that determine my quality of life, are completely beyond my control.
I see a psychiatric nurse named Sarah every two weeks or so to help me sort through the stress and emotions of my life, and when I told her one week that I was feeling things were pretty out of control, she pointed out to me that I am making choices on a daily basis about my health. Positive ones. The thought hadn’t occurred to me previously, but as I considered what she had said over the week, I realised she was right.
Actions I took for granted before became choices to me. Being drug compliant is a choice. Eating healthy food is a choice. Keeping on top of appointments and prescription changes is a choice. Going to cardiac rehab on a weekly basis is a choice. And even seeking emotional support from Sarah so I can deal with all that is going on is a choice. I make choices every day, some good, some bad, but they are there. My little bits of control. Even when it involves something as small as picking socks for the day, I relish being able to make the choice.
There are a lot of aspects of my health that are beyond my control and always will be. There are potential risks for the future that I can’t do anything about. Both realities are, at times, panic inducing. But realising I am trying to do all I can do on my end to promote positive results gives some of the control back to me. And in moments of panic and worry, it is that realisation that helps me breath just a little easier.