Perfectionism and Failing (Eliquis)

Let’s set the scene: It’s a Wednesday morning, the weather is thawing and I’m able to get away with wearing a sweatshirt without an added layer. I’m feeling pretty good, woke up at a reasonable time and was able to eat breakfast before driving to a doctor’s appointment.

I do check-in at the hematologist’s office and sit in the waiting room, working on the half completed puzzle they have out on one of the tables. I’m actually pretty proud of myself because I managed to fill in one of the corners before being called back.

I love my hematologist. She’s understanding, compassionate, and gives no bullshit. If she doesn’t know something, she searches for the answer alongside you. Other than intermittent pain in my chest, to be expected as my body is still breaking down the blood clots, and some fatigue, I’m doing well. I get the doctor’s seal of approval and head off to work.

Roughly 6 hours later, guess who’s being admitted to the hospital again.

Since my last stay at the medical hotel I’ve made a lot of changes. I stopped taking certain medications, started taking others, made sure I moved my body as often as tolerated, and focused on fueling myself with nutritious food. I set alarms on my phone to make sure I was taking my medicine at the same time every day, going to bed and waking up in line with my suggested sleep schedule, and turning off my devices 30 minutes before bedtime. I was doing everything I needed to do at the right time, the right way. I was following my doctors’ orders perfectly.

And yet.

Wednesday after work I began to feel pain in my chest, similar to what I’d been experiencing all month, only this time it didn’t go away. Though frustrated and sure I was about to get an ER bill for no reason, my hematologist had been clear in her instructions of what to do if the pain got worse, so off to the emergency room I went.

For some reason, the ER is the place to be on Wednesday evening, so after getting triaged and getting yet another CT scan, I sat in the waiting room for a few hours, reading my book, making friends with the lady sat next to me while my fantastic mother got us both hot drinks, and actually dared to say the phrase “the scan isn’t going to show anything new. I’m just going to have to power through the pain until it gets better.”

I should have known better than to speak in absolutes.

I was brought back around 9:00 and saw the emergency doctor on call. He was very kind and attentive, but it was clear that the emergency department was swamped and he didn’t have time to walk through the CT scan with me little detail by little detail. Instead, he summed it up nicely by saying, “you’ve failed Eliquis (the blood thinner) and your body has developed new clots in your right lung. We’re admitting you.”

So in I went for the least restful, most expensive hotel stay around, and began an IV drip of blood thinners.

While in the hospital I was able to see the hematologist on call, who actually works closely with my hematologist, and she explained things in more detail.

I’ve been on a blood thinner, Eliquis, since January to keep my body from forming more clots. Unfortunately, I am among the 5% of folks for whom Eliquis doesn’t work. They call this ‘failing’, meaning the blood thinners had me at a therapeutic level but didn’t stop new clots from forming. In the last month, the clots in my left lung have not dissipated and I’ve developed significant blockage in my right lung to go along with the small blood clots already hanging out over there. The pain that I was feeling in my chest was actually the lung tissue dying, as the clots were keeping parts of my lungs from receiving proper blood flow.

The good news is, this isn’t the worst case of ‘failing’ they’ve ever seen. The bad news is, nothing will be named after me in medical journals.

I’m on new medication now, including a twice daily shot in my stomach, so I’ve been discharge from the hospital and am allowed to resume normal activities as tolerated. Which means I’m happily back to work and looking forward to this whole ordeal to be in my rearview mirror.

I’ve been owning the term ‘perfectionist’ a lot lately as a sort of self-deprecating reminder to myself that it’s impossible to be perfect. That I can try to be ‘perfect’, but ultimately the only thing that’ll accomplish is driving myself insane. Even when I follow directions perfectly, as was the case with my medication, it’s out of my control.

This isn’t to say that I shouldn’t try, especially when it comes to medication and following the instructions given to me by doctors, but to say that the outcome is out of my hands. That’s something I think we all struggle with, spoonies and non alike. We like to keep the illusion of control. When something comes along to break that illusion, we react poorly.

I think that’s why people are always so quick to give advice. Not the well meaning suggestions and ideas from my friends and family, but the internet troll, health influencer advice telling me to try yoga and essential oils. If I’m sick and you’re healthy, clearly I’m doing something wrong or haven’t tried the right routine.

After all, if it turns out I’m doing all the right things and am still sick, what’s to stop you from ending up the same way?