10:26pm September 13, 2014

I have to remember.

youneedacat:

If I’m feeling unusually washed out and messed up, it probably means I need to take dexamethasone. Or Mestinon. Or dexamethasone and Mestinon.

I’m so used to feeling this way over the years that I forget it’s not a natural way to feel.

I’m so, so relieved that you’re still alive.

This time last year, I didn’t think you would be.

Thank you.

None of my friends thought I’d be alive.

Neither did I.

Even after the feeding tube, one friend said they sensed me ‘fading’ and didn’t understand why. It was the adrenal insufficiency.

Everyone saw it, nobody talked about it.

Least of all me.

Which was a mistake. If I’m dying again, I’ll talk about it.

Honestly I was nervous tonight. My breathing was affected. I am going to stop CellCept until I get some bloodwork done. I need a baseline off of it anyway, I probably shouldn’t have started yet. CellCept can cause breathing trouble. I had to put on my bipap because I was having central apneas while awake, which is never get a good sign.

I’m still going to give the stuff a try, but it scares me.

It might also not be the CellCept at all. I’ve had some sniffles and I may be getting sick. Especially with the CellCept messing with my immune system along with the dexamethasone.

At any rate, no more CellCept until I get my initial bloodwork. (They do monthly bloodwork on CellCept.)

And I’m so glad to be here. I will never forget that this is time I wouldn’t have had without the tube and the dexamethasone. And that any day could still bring my death, it’s still easy to aspirate. Not as easy, but too easy. I’ve only done it twice counting December, though. I mean, real aspiration, not mini-aspirations that don’t cause infections. I’ve had a few of those too.

Lucky to be alive. So fucking lucky to be alive. And that’s what people don’t see. It’s not that I can get out of bed, it’s not that I can walk, it’s that I’m alive at all no matter what condition I’m in. That’s what has me so happy all the time. Life. The feeling that my body is not fading away on me. That Death is not hanging around staring me down at every turn. Walking and getting out of bed are cool, but life is cooler.

People want me to be an inspiration, a symbol of hope, a symbol of what modern medicine can accomplish. I’m not any of those things. I’m just alive. And alive is enough. I don’t need to be someone’s hope, especially if the hope turns out to be false hope.

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