Monday, August 10, 2009

Moving forward

I must confess, although I’ve been fighting it, I was in the dumps last week. I couldn’t help it. I couldn’t help but feel somewhat sad about our news from the NIH. Although I’m grateful the trial will continue, and I know we must press on to fill it, I can’t help but think of those in the trial who aren’t stable and who need answers now.

These trials are fraught with an emotional component. Currently, there is no FDA-approved treatment for pulmonary fibrosis. Thus, even those that are on placebo there aren’t really a plethora of other options. Still, I know that we were all hopeful that the drug would be found to be a great treatment, and that we’d all be placed on the drug for the duration of the study. I’m grateful that the researchers didn’t find that the drug doesn’t work. I keep reminding myself that could have happened, and that would be even more depressing than this situation is – but I don’t think it’s fair to not acknowledge what many of us feel.

I’ve been hard on myself this past week. I keep telling myself that there’s no value in getting emotional or having a pity party. It doesn’t help us work with the researchers, and it doesn’t do anything to further better treatments, and one day a cure.

Now that my disability is settled, I need to be beating the bushes for more paying work (hopefully my voc. Rehab counselor will get things moving so I can actually have the tools I need.). Yet, the dilemma continues that has been there since I was diagnosed. We need to fill this trial. That means we need to be on a non-stop outreach mission. Donna can’t do that alone. The “office” can’t do that alone.

It isn’t an abstract concept to me. It’s a life and death fight – and it’s personal.

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