Some days the diagnosis is the easy part.
The hard part is everything that comes after.
Turns out the headaches that have been wrecking me aren’t “just stress.” They’re cluster headaches — and they’re happening because my oxygen is way too low. So now I have a tank. And a fight with my insurance company. And a lot of feelings.
I went in today because of the headaches.
Not the regular kind. The kind that drop you to your knees in the kitchen, the kind that make you grip the counter and just breathe and pray nobody talks to you for the next twenty minutes. The kind I’ve been chalking up to stress, to dehydration, to “probably just need more sleep,” to whatever lie I could tell myself so I didn’t have to add another doctor to the list.
Turns out they have a name. Cluster headaches. And they have a cause: my SpO2 — the amount of oxygen actually making it into my blood — is way too low. Hypoxemia. My body is essentially starving for air and my brain is screaming about it the only way it knows how.
So now I have an oxygen tank.
That’s it in the photo. Big, green, ugly, loud when you move it, and apparently my new accessory. Cannula in the nose, tubing down the front of my shirt, the little hiss of compressed air that I’m supposed to find comforting and mostly just find loud. I took the picture in the office because I needed proof — for myself, mostly — that this is real, this is actually happening, this is the thing my body is making me carry now.
And then, of course, the insurance company.
I don’t even want to get into the whole thing because my head is pounding as I type this, but the short version is: they don’t want to cover what my doctor says I need. They want me to try the cheaper version first. They want a different code. They want a prior auth. They want me to call back Monday. They want me to be a different person with a different body and a different problem so it fits inside their little box. I have spent more of my life on hold with insurance companies than I have on the phone with my own family and I am so tired of it.
Because here’s the thing nobody tells you when you start collecting diagnoses: it never stops. There is always something. The minute you finally get one thing under control, something else lights up. Your body becomes this list of conditions you have to manage, and appointments you have to remember, and pills you have to take at the right time with the right food, and now apparently a tank you have to drag with you. And every single one of them comes with its own fight — with the pharmacy, with the insurance, with the front desk, with yourself.
I am so frustrated. I am so tired. I feel like crap basically all the time and I’m sick of pretending I don’t.
I don’t have a neat little bow to tie on this one. No verse, no lesson, no “but here’s what I learned.” My head hurts too bad for that today. Maybe tomorrow. Maybe next week, when the tank stops feeling like a stranger and starts feeling like a tool. Maybe when I finally win one of these phone calls.
For right now, I’m just here. Breathing — actually breathing, for what feels like the first time in a long time. Annoyed. Hurting. Honest.
That’s the post. That’s where I am.
If you’ve been in the insurance trenches with a chronic thing of your own, or if you’ve ever had to make peace with a piece of medical equipment you didn’t ask for — leave me a note. I could use the company today.
— xo, still here, still salted
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