as small as a world and as large as alone, Seriously this stuff is the elixir of life for...

4:37pm July 1, 2014

Seriously this stuff is the elixir of life for me.

Don’t take it, and I weaken and die. Take just a teeny little amount twice a day, and I not only live, but I can do all kinds of things I haven’t been able to do in years.

Dexamethasone is why I might live to be old and grey and wrinkly. Which I’m totally looking forward to each grey hair and each wrinkle. I want to get really wrinkled, and go totally grey, and have long grey hair that shows everyone I got old!

I get really excited every time there’s a new refill of this. And especially excited today, because there was some confusion with the insurance coverage due to my stress-dosing over my father’s cancer, and we weren’t sure how much of a headache it would be to get the meds.

But seriously.

Dexamethasone amazes me.

It amazes me every single time they put it in me. They have to use the smallest of our med syringes because it’s so very little of it that I need. But that tiny dose makes my entire body function. So to see an entire bottle of the stuff… in fact I have three bottles right now, one of them half-full… it’s just mind-boggling. There’s so much power in one tiny chemical.

And so much power over my body in not making ACTH or cortisol. I still wonder if it’s my hypothalamus or my pituitary. (I do have a lot of weird things going on that can be caused by problems in the hypothalamus, but I don’t know if that means anything here. It’s pretty rare that this would be the hypothalamus and not just the pituitary going wonky. But then my family is good at rare.)

I can’t get over it. Every time they draw it up. "That little thing is saving my life?“ "That little thing makes me able to walk?” “That little thing makes me able to climb stairs?” "That little thing makes me able to exercise without collapsing?“ "That little thing is why I’m alive and not dead?”

That little thing is why I’m alive and not dead.

And there’s an entire three bottles of it sitting in front of me just staring at me. An entire three bottles of the power to keep me alive.

I feel like in Zelda when you get the potion bottles full of life, so you can drink them and your life comes back.

I’ve got three bottles of the red potion.

And I think it’s actually colored red, too, just to be more fitting.

But three bottles of red potion. And I don’t need to drink the whole bottle to get better, in fact that would kill me. All I have to do is get like… 2.5 mL or 5 mL of it into my feeding tube, and everything is better again.

I am alive because of this.

A tiny, tiny dose of dexamethasone is why I am here, typing this, instead of in the ICU or dead.

This will always be true, as long as I live.

And maybe that’s supposed to scare me but it doesn’t. And lots of people talk about “needing to be on medication for the rest of your life” as if that, in itself, is a horrible fate.

But for me, it’s like… I have the elixir of life, and as long as I keep taking it, I’ll be alive. And that’s almost like magic. Like Nicolas Flamel and the Philosopher’s Stone. It’s this elixir that I can take and it makes sure I stay alive.

I’m alive because of a tiny syringe full of dexamethasone.

I’m alive because of a tiny syringe full of dexamethasone!

This is wonderful news and I couldn’t be happier, and sometimes it just hits me this way and I’m grateful for everything in a way that there are no words for.

And I feel love for a medication. I’ve never felt love for a medication. But I feel it for this one. I love dexamethasone. I love when I get refills for it. I love looking at it. I love looking at the syringe whenever a staff person fills it up. I love thinking about it. I love dexamethasone.