(Disclaimer: I have a million different thoughts running through me right now, so I apologize if this is a little disjointed.)
My appointment at Hopkins yesterday wasn’t good. But it wasn’t bad, either.
My lung function dropped about 3% – from 67% back in October, to its current level of 64%. My best range has been in the 70s, so my doctor is a little concerned that it hasn’t been going up. I will say, and I admited this to him, that a lot of it is probably my fault. I’ve slacked on my treatments, in a big way, and for a long time. That adds up. But like I said before, I’ve been doing well keeping up with them for close to two weeks now.
Unfortunately those two weeks haven’t had much of an effect. Yet. That’s what I keep reminding myself, yet. If I keep up with this, and get back into an exercise routine, my lung function will (hopefully) go up.
To help with that, my doctor has put me on a round of Bactrim and added a new nebulizer medication to my regimen. (To read more about that, visit the “About My CF” page.)
I left Hopkins even more overwhelmed than usual. This visit hit me much harder.
This is the best way to describe it: It feels like someone has died. Like I’m in mourning. I feel like I’ve lost who I thought I was going to be and have to surrender it to this disease. I don’t want to let CF control me; I badly want to be the person that puts on a smile and faces all that has to be done with grace and strength. I feel anything but strong.
Being diagnosed at 16 made it easy to shove CF to the back of my mind. I had boys and dances and college applications to worry about. I did my medicine because my parents and doctors told me to, but I didn’t let the meaning of it all sink in.
Then I went to college. I didn’t have parents to remind me of my meds. And there were boys and parties and classes. And FREEDOM.
So here I am, almost ten years later, still grappling with what having cystic fibrosis means. And it’s HARD. And SCARY. And completely overwhelming.
I’m sad and angry and hopeful and ashamed and fearful and tired.
I’m full of questions. (What will happen in five years? Ten? Twenty? Will I live to see my 40th birthday? Will I have kids? Will I have to get a lung transplant? Will I be able to accomplish all the things I want to do with my life?)
It never ends.
And that’s the thought that makes me want to give up. Because I have to deal with this every day, for the rest of my life.
So I remind myself to take one day at a time. To get through RIGHT NOW.
And hopefully, before it’s too late, a cure will be found.
But until then I’m going to do my treatments, drag myself to the gym, try to get enough sleep, eat healthy, thank the people that support me, and just make it through another day.
Because my life is pretty damn wonderful, despite CF. And I want to stick around to enjoy it.