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I’m in denial

It’s about that time – time to go back to the NIH for my two-year follow up on the pirfenidone trial for the pulmonary fibrosis of Hermansky-Pudlak Syndrome. It doesn’t seem like it’s been that long.

Usually I start to work up to “the big trip” ahead of time. I probably carry way too much stuff with me, partly because the suitcase is sitting on my living room floor several days in advance.

This time it’s as if I’m in denial that the time has arrived. I’ve been so busy. Getting ready to be gone makes me even busier, if that’s even possible. I haven't done any of the things I need to do to get ready - things like making sure I've got all my medical stuff together, making sure I don't have an extra bottle of study drug somewhere (as I'm supposed to bring back any left overs) and hey, just getting my hair cut!

I have noticed a little increased shortness of breath – paranoia or reality? It seems to happen only at work though and has improved as the summer weather has come to an end and it’s cool out. Perhaps just anxiety? I couldn't imagine how that might be happening - (see my tongue in my cheek?)

This morning I had a code brown and a bloody nose. Who has time for this?

Now that the trial has been underway for three years and some of us have been in it for some time, there’s a new hard reality to add to the list of hard realities about this HPS life. Some of us are doing great while others aren’t necessarily always doing great. In the back of our minds we all wonder – Are we on placebo? Are they on placebo? Am I just lucky, or is this stuff working? When will the luck finally run out? When is the trip going to come where things start to move ever so slightly south? We all know we'll tell ourselves that it's just a bad trip - a blip in an otherwise stable outlook - but I know how I am and I know that if that happens, it will haunt me for the next four months.
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