Maybe some people wouldn’t see it this way. Especially with the amount of venting I do on this blog. But if I can make one judgement about myself and my disease, it’s that I’m blessed.
When you’re surrounded by healthy people–like, for instance, when you’re in a high school atmosphere and people can play sports and take harder classes and work a job after school and all you can do is survive the grueling school day–you may not feel like you’re better off than others are.
But that’s not how my life is most of the time. When I’m working, it’s in the presence of other rare disease patients whose stories are difficult to even listen to sometimes. Their days are ten times more complicated than mine are.
And on Tuesdays, when I go into my infusion center to get my port accessed, I know I’m going to be sitting next to the very sick and dying. I’m reclining next to women getting bags of blood transfused. They’re not even all old people either. Some are young, not as young as me, but thirties–maybe forties. People who shouldn’t be there.
I’m not there for chemo therapy or even IgG transfusions. I’m just there to get a needle pulled in and out of my chest for a millisecond.
I am blessed.
But this past Tuesday it didn’t feel that way.
I’ve had a bit of a dark cloud hanging over me the past week or two. Defeated, I think would be the best term for what it is. I’ve been trying to do so many things–the right diets, the right exercises, the right medication, rest, vitamins–just trying to have some kind of positive effect on my health in any way–and it just all swirled down the drain.
It’s been like driving through a bad storm without my windshield wipers on. And coupled with the sadness about not being able to lower my desipramine anymore and the anxiety of what that means for my future–I’ve just been feeling kind of fragile.
I had a new nurse on Tuesday. She was from Israel and before she’d even gotten out the alcohol swabs I’d learned that she was 36, from Israel, had two kids, and lived in the town we’re house hunting in.
She was successful at getting the hubert needle into my port, but we couldn’t get blood return. This was obviously a new problem for her, I could see she was stumped. (That’s not implying she’s an inexperienced nurse–Ports are just really unusual unless you work in infusion, which she’s new to.)
She pulled the plunger back a few times before I suggested she flush again with saline. She then asked the other nurse what to do. She suggested putting a (sorry, can’t remember the term for it), like a detergent into the port to remove any clots. It’s not painful or anything, it just meant I had to be there for another half an hour to wait for the detergent to work.
Which was frustrating because I actually had plans for that morning. R.J was home sick and I was going to stop at Whole Foods for some groceries, pick up a gift for a friend’s birthday dinner that night, and then stop by Jamba Juice to get R.J his regular. Do a few hours of work before dinner–but all of that was delayed just a bit now.
A half hour came and went, and when she went to try plunging the syringe again it still hadn’t unclogged.
The nurse put in another syringe full of the stuff and then left to go set up her other patients. She was gone for twenty minutes and figuring it MUST be working by now, I decided I’d just test it myself. I pulled the syringe back on the needle and eureka! Blood return!
I called the nurse back over, “It’s working!”
“How do you know?” Another nurse asked, “Did you touch it?”
“Well, I tested it, look–blood return.”
“That’s not blood return, that’s not enough blood return. We should be able to fill the syringe. But now you’ve messed with it and we’re going to have to start all over again.”
My heart dropped.
She shut the curtain and I pretty much just burst into tears.
And then immediately felt consumed with shame, because how petty was it to cry over a half an hour’s time wasted? When people next to me where getting much worse treatments?!
“What happened! Was it that nurse? What did she say?”
I blubbered about how I was fine and was just feeling stupid now that there were people in here with much worse shit going on then my interrupted scheduled.
“No, but I get it, I get it.” She said, and she wrapped me in a hug–which usually is something I HATE from nurses, but this happened to be the right moment completely and I was grateful for it. “It’s okay. It sucks. You’re younger than everyone here. You’ve got a right to be upset. They’re all grandmas. Even the other nurses are grandmas. It’s okay.”
I laughed and took a minute and tried to get my face arranged.
She left to go get some saline syringes, did a couple of quick flushes and filled a whole vial full with blood. As soon as she got my cap back on I flew out of there.
I walked around Whole Foods a bit trying to decide if I wanted bread or bread (or possibly bread.) And started seeing people gawking at me. This meant one of two things: I was having a nipslip or I’d forgotten to tuck in my port wire and I had my tube just hanging out.
We’d had a little issue with pulling out that syringe full of blood and my tube was looking a little redder than normal. I hastily stuck the whole thing back inside my cleavage and proceeded to the soup area.
We all have different ideas of what should be pitied and felt sorry for. I think most days I can do a good job of saying to myself: this is the way it is right now, it’s been a whole lot worse than this and each day is a whole lot better. But some days I have my moments where I sit in my car and cry about it. And I guess it’s okay to have those sinus-clearing, gurgling noised, sob-a-thons.
You’ve just got to be able to rope it in and know that it’s a bad day. Not a bad life.