Cross your fingers, cross your toes. Any superstitious habit, pull it out now. What’s the big deal?
My IV access. It, in a word, sucks. Not an unusual problem for chronically ill patients, but a serious problem nonetheless. It’s easy to figure out how useless my veins are, the IV team runs around to poke me for blood and placing IVs which blow every day more or less.
It’s kind of a joke, but it’s also kind of a desperate make-a-wish plea - give me a port, a PICC, give me access. I try to make conversation with anyone pricking me with a needle because a) they might do it a little nicer and b) it makes it less awkward. I mentioned to the IV nurse about my quest for access and he decided to write in my chart that I needed something more than IVs. He said there was one last spot, but after that he was done. And he wasn’t kidding. The IV has officially refused to come and poke me - officially. Can I just say how weird that is?? I’ve never heard of being refused by a medical service, but it is nonetheless my reality.
So here’s the scenario: I’m up the river without a paddle or a boat. I’m sick and need IV meds, and can’t get them since I have no access. My night nurse, we’ll call her Liza, is arguably the most optimistic hilarious nurse I’ve ever met, and she decided that she would try for an IV - once. Liza warmed me up with heat packs and went off to share our new mantra with the nursing staff - “Pray for 14A.”
Not only was I the girl who could place an NG tube, I was the stubborn 14A bed who couldn’t keep an IV. The entire nursing staff prayed, and three tries later, nothing. But a PICC was on the horizon for the next day. First several PICC attempts failed. They shipped me down to Interventional Radiology where they finally got a line in me - and it’s purple, which is my favorite color, bonus.
I’m not going to pretend like IVs don’t hurt, or that placing a PICC is a fun exercise in radiology, but when you need it, you need it. It’s not like I didn’t go in the bathroom to cry when they said they found Crohn’s in my small bowel - almost eight months post-ostomy and I’ve been admitted five times, and let me tell you it’s not for the food.
Being sick is a full time job. We have to cope with the physical ailments, the treatment, the day to day stuff, the doctors, and regular stressors. It’s not like we chose it or in any way signed up for it, but it is the reality that we have to face each morning.
One of the technologists in the radiology department was asking about my major and so I was talking about my career goal and working with chronically ill kids. The tech came back with an interesting observation - he said that you can always tell the chronic illness kids because when they’re wheeled in, they scan the perimeter for what is going to hurt them, be it a needle or whatnot.
And it’s true. We want to be leveled with, told how much it’s going to hurt, because saying it won’t and then having it hurt does nothing to make the situation easier. But it’s awful, living in fear of the pain and the suffering.
The reality is unfair, and I’ve said that a thousand and one million gazillion times. It doesn’t matter how much nurses chant your ‘pray for 14A’ wish, it doesn’t mean that some divine intervention will give you blood return. But what does matter is in our control - coping and dealing and asking questions and pursuing our best health and life. Laughing, crying, hugging, no one needs a prescription for that.
After a rather nasty tasting Barium swallow, the doctors want to see my stoma (the intestinal part of the ostomy). I pulled off my bag, only for my little stoma to profusely spit Barium all over me. After the doctors left, I buzzed the nurse and was unable to move, literally coated in Barium. I was barely rationing my limited underwear supply, but I mentioned to the nurse about throwing out accident panties, who wants to use those again? The Barium was all over and all the nurse and I could do was laugh as we discussed when to throw out underwear, like deep belly laughs - I even had the Barium on the bottom of my feet, now that takes skill.
It was gross for sure. But it was funny. I apparently need all the help I can get when it comes to accidents, but don’t we all?
Once upon a time I thought that I could wish away my Crohn’s as simple as a birthday wish over chocolate cake and pink candles, but it’s not that simple - clearly. But even though I can’t wish it away, doesn’t mean I can’t laugh or think it’s amusing. Praying for an IV won’t necessarily work - but hard work will eventually triumph in the fight for the cure, and when that day comes, we can say that we helped, and that, that is worth everything.