2:37am March 8, 2014

So my doctor sent me instructions, not sure if I mentioned this in all the other stuff today.

We’ve been emailing through this setup that allows me to talk to my doctors through the hospital system.

Anyway I asked him what to do if I get sick, injured, stressed, etc. and he said to do something called ‘stress dose’ with the Decadron:

1.  If I get a cold, double my dose.

2.  If I get a flu or anything requiring antibiotics, triple my dose.

I assume anything where I get severe enough sensory overload or emotional stress to spill over into physical stress, falls somewhere between the two, or wherever is most adequate to the severity?  Like the time I went to an art gallery opening, then within days attended basically an incredibly PTSD-provoking online protest, and then suddenly could barely breathe without support.

I keep thinking back to things this could explain.

Last fall, I got sick.  It was barely a cold.  Like barely.  Or it could’ve been a mild immune reaction to my flu shot.  But whatever it was, was super-mild.  But I started feeling as if breathing took too much effort, and I went to the emergency room because I was worried, but since I didn’t have pneumonia they sent me home and told me I didn’t look sick so I shouldn’t worry.

It could also have been the neural junction disorder we think I have, which was my pulmonologist’s guess at the time.  But now I’m reevaluating everything in light of adrenal insufficiency.  Especially… I know that myasthenia responds to physical and emotional stress as well, but even back then I felt that I had something else, that responded to stress differently than the straight muscle-weakness thing does.

I should’ve trusted myself.

Should’ve, but didn’t, and that’s okay.  My doctors didn’t know either.  Nobody knew.  I’m incredibly thankful to my doctor for doing the cortisol test.  I still haven’t asked him why he did it, what made him think to do it.

I wonder if he’s second-guessing himself as much as I’ve been second-guessing myself.  I keep thinking back to all these clues.  And I keep thinking back to all the close calls and the fact that now I have information that could help me survive.  

Each time I think back, new information surfaces – just now it was that cold I got last fall.  Earlier it was something that happened after that, and earlier than that it was something that happened before any of that.  It’s all out of order, across time and space, making all these connections I couldn’t have made before I understood.

And yet I was making a lot of these connections.  I was making observations that point straight at this.  If I’d known what adrenal insufficiency was, I’d have suspected it.  But I didn’t.  I’d heard of it – but the context I’d heard of it in, wasn’t one that… worked?  Like… basically I think some people were talking about whether I had 'adrenal fatigue’, which I of course discounted because it was a quack diagnosis handed out to anyone with any kind of fatigue for any reason, and I’d already been harmed by quacks misdiagnosing stuff I had.  So in fact their mention of it made me less likely to think of it as a genuine possibility.  Especially since I think they were mentioning it long before I actually had it.  …yeah.

But I can’t stop re-evaluating my entire medical history, it’s not a conscious process exactly.  It’s more like these sparks in my mind.  One place and time, then another place and time, all these events, completely random and out of order, but all connected.

5 notes