I know, those aren’t exactly words you expect to hear from someone whose diagnoses may haunt her for the rest of her life. It’s true, though.
I’m lucky because the Affordable Healthcare Act passed. This means that I have health insurance until I’m 26, even though I’m not a student right now. And I’m lucky that I HAVE health insurance, and that it’s decent. It’s paying for my surgery on the 26th, it covers the two doctors I’m sure I’ll be seeing at the Cleveland Clinic (and I’m assuming the others although I was told to check on a person by person basis), and I haven’t somehow magically found myself booted from it yet. Instead I just have to fight them when they try to ask about some secondary insurance that they’re thoroughly convinced I have (I don’t).
I’m also lucky that I have a support system at all. My family isn’t exactly the most supportive. I’ll admit that. I’ve been taking myself to all of my cardiologist appointments, the one time throughout this process that a parent was actually at the hospital with me (for my tilt table) I kicked him out of the room because he was being aggressive with the electrophysiologist for being late and I was too stressed to cope with it, and sometimes it feels like I’m talking to deaf ears. I’ll try to have conversations about concerns, or just vent some of my frustration, but it feels like people are unresponsive sometimes. Then again, it’s not like this is the first time I’ve been sick, or I’m the only sick person in my family. So I get it. But some of my friends have been great.
I have this friend I call Buttercup, he’s basically my favorite. I seriously adore him. He’s about to start med school, so he’s actually mildly interested in everything that’s been happening over the past few months. And he’s understanding. I nearly flaked on plans tonight because I fell asleep for four hours instead of taking a half hour nap like I had planned on, and I got a text from him asking if I was okay. When I apologized for not texting sooner and explained that I’d just been exhausted he offered to meet up another time. But I had the stubborn response, “Nope, I’ll be fine. I want to see you!” And it was worth it. He’s the best.
Another one of my friends is playing “babysitter” this weekend. He isn’t really – but it’s how we’re getting away with my making a potentially irresponsible decision and going to an amusement park during a heatwave. He knows me well enough to know when I’m spacing out, and I think if he catches onto it sooner than me he’ll probably pull the “Have you been drinking your water, dear?” Except I’m a big girl – so my care, including putting up with those godforsaken salt pills, is really in my hands. That’s why I have every intention of taking mass quantities of Propel with me, and having salt tablets, Advil, and sunscreen on hand.
I’m also pretty lucky in that I DO have a diagnosis (sortof). I was given the POTS and syncope diagnoses, but according to research I’ve been doing it’s usually just a manifestation of dysautonomia which could have a few methods of treatment and mine will depend on more results. I guess we’ll see. Again: I’m lucky that even though Cleveland seems ridiculously far away it’s actually doable for a day trip, and my insurance actually covers it.
I know that there are days when I get frustrated with not being normal and wish that I could adjust the quality of life I’ve been saddled with lately, but honestly I’m lucky it’s not worse. So what if I can’t stand over the stove while cooking, I can still dance (with some adjustments and precautions), I can walk, and my attempts at running haven’t been TOO terrible. I might get dizzy afterward or be slightly exhausted later in the day (or the next day) but whatever, I’m alive. I’m not dying – my quality of life is just changing.
A part of me also feels lucky that I’ve always been so ridiculously stubborn about things. I feel like being stubborn might be part of the clue to getting back to normal. It’s also helping me to go, “Yeah, I’m sick. It sucks. Sometimes I HATE this because right now I just feel stuck. But I can still do things and be a person outside of POTS.” Yeah, I have to be careful about a lot of things – I need to make sure I’m staying hydrated, I’m not overdoing it so that I don’t sleep for like three days straight, and I’m careful about strenuous activity because when your heart rate is 150 just because you’re standing or 90 even laying down, you tend to be a little cautious about purposely raising it. But I can still have friends, sit around on a couch laughing too hard while watching Whose Line, make adorable things for my friends with the sudden copious amounts of spare time that I’ve got, and enjoy food (as long as we’re at safe restaurants) with the people that I dance with.
Sometimes life is hard, and I get frustrated because I wish I could do MORE – but life is good.