I’m almost out of the woods at this point. I had a follow-up appointment with my infectious disease doctor. A part of me was hoping she’d tell me that my wound had healed enough to put in the new port…but I knew that was unlikely and she gave me a flat out “no” the second I asked.
“Give it another two or three weeks,” she said. It shouldn’t seem like an eternity, but it does. “Your blood test came back and the infection is still there.”
I swear I felt my stomach just drop out of my butt.
“But that was taken before you finished the antibiotics, so we test again in seven days and we see how you are at that point.”
I walked out of the office and drove home, thinking about what a crazy year it’s been.
Easily my sickest year ever.
Worse than that time I was in the hospital every other week because of the gastroparesis (before we figured out I needed like a gallon of IV fluid for my stomach to function.)
I thought about the uncomfortable midline cath in my arm.
And the freshly irritated skin underneath the new set of bandages the nurse had applied over my wound after the doctor wanted to see the progress for herself.
I thought about the huge disappointment that was the trial of titrating off of the Desipramine. I thought about the smack-in-the-face neurologist appointment where I was practically laughed out of the exam room when I talked about wanting to one day get pregnant.
And then I thought about all the people who have been following my blog this year and watching this journey unfold.
I thought about their kind comments and their pats on the back about me being brave despite it all.
And I thought that you should probably know that I’ve had panic attacks every night since I left the hospital. And that every time I feel my face flush and have to take my temperature I’m frozen with the fear that it’s going to be another fever, that the infection has gotten worse. That when the home nurse packed my wound with some kind of iodine’d gauze I had to rip it out as soon as she left because the smell reminded me so fiercely of the hospital that it was making me nauseated.
You have to understand that my fortitude isn’t always some kind of “bravery” and it’s definitely not sucking it up and not “reacting” to the needles or the pain or the fear of what’s about to happen. It’s just knowing it’s going to happen. It’s going to suck. And kind of just knowing, well, you’re going to endure it anyways.
I cry. I scream. I ask for my mom or my husband.
I ask for the pain meds instead of always “toughing it out.” I swallow 14 pills a day, but every once in a while one will get caught in my throat and I’ll spew a mouthful of water all over my laptop.
It’s a learning process. There is no such thing as the perfect patient. Or the naturally fearless. Fearlessness comes from facing down the thing that you can’t get away with avoiding. That you decide you don’t want to avoid any longer—because life without facing it is somehow worse.
Being afraid is always the worst type of pain.
What’s helped you overcome your “patient” fears?